tag:blogger.com,1999:blog-11392838910688209682024-03-14T14:49:02.496-04:00out of the lyme lightout of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.comBlogger196125tag:blogger.com,1999:blog-1139283891068820968.post-29336330857583800282022-05-08T07:19:00.003-04:002022-05-08T07:34:25.610-04:00Lyme Disease Awareness Month 2022<p><span style="font-family: Neucha; font-size: medium;"> It's that time of year again... time to hopefully bombard everyone with facts about Lyme Disease - awareness, prevention, & treatments (or lack of them) as well as tick awareness.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">Please share my blog posts or social media posts so people have access to this vital information. </span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">I started this blog in 2011, and it has been a long and very twisty journey for me, with SO many things impacting my health; however when it comes to Lyme Disease in the UK, we have not advanced very much, in practical terms, for people who are ill and need treatment.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">Prevention is ALWAYS better than cure, and in the case of Lyme, that is 100% true. Lyme can be cured if it is treated immediately following a tick bite, with the correct dose of antibiotics, but once borrelia spirochetes (the type of bacteria that causes Lyme Disease) begin to spread throughout the body, treatment becomes increasingly more difficult. Lyme Disease experts do not speak about curing systemic/ chronic Lyme, but about it going into remission. </span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">The bacteria can remain in the body in a dormant state, and become active again following any kind of trauma/ illness to the body. I personally experienced this in 2016 (resulting in treatment in 2017, 2018 & 2019) after I had a car accident at the end of 2015.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">The information below is SO important. </span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">ALWAYS tick check after you've been outside - even in your own garden. </span></p><p><span style="font-family: Neucha; font-size: medium;"> Contrary to some 'opinions', ticks are everywhere in the UK (& in every state in the US, & have been found on every continent, including Antarctica).</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">Removing a tick quickly reduces the risk of the tick spreading infections. However it is NOT necessary for a tick to be attached for a specified period of time before it can transmit infectious organisms.</span></p><p><span style="font-family: Neucha; font-size: medium;"> Lyme Disease, caused by borrelia burgdorferi spirochetes is often accompanied by other co-infections such as babesia, erlichia, bartonella, & others. All are difficult to detect and difficult to treat.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">Ticks deserve their nickname: nature's dirty needle.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">Knowing how to remove a tick properly is essential - details below:</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">Right at the beginning of May, as if on cue, my brother-in-law found this (well fed 🤢) tick on one of their cats.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPsBwo4YGNsdIsFuW38uN-ha5ZxRWgkW7QU5tOlYLE9VqVaC9mH-mbF808WulPoGNUZWfU1Hcxt11c9AKdd1iRonb9IwEWwmYyeNQs8_mATkaHAmwg_q-OJ0wkwCZy60dslxv5GhKqxqLOGnQQUaKw7i1usAa7xl4j3ocAyTBk_fIBEuB_xngNrEyT/s833/20220508_115258.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Neucha; font-size: medium;"><img border="0" data-original-height="597" data-original-width="833" height="229" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPsBwo4YGNsdIsFuW38uN-ha5ZxRWgkW7QU5tOlYLE9VqVaC9mH-mbF808WulPoGNUZWfU1Hcxt11c9AKdd1iRonb9IwEWwmYyeNQs8_mATkaHAmwg_q-OJ0wkwCZy60dslxv5GhKqxqLOGnQQUaKw7i1usAa7xl4j3ocAyTBk_fIBEuB_xngNrEyT/w320-h229/20220508_115258.jpg" width="320" /></span></a></div><span style="font-family: Neucha; font-size: medium;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Neucha; font-size: medium;"><br /></span></div><p style="text-align: justify;"><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 He removed it properly, with a @ticktwister.co.uk - you can see the head is fully intact.</span></p><!--/data/user/0/com.samsung.android.app.notes/files/clipdata/clipdata_bodytext_220508_120605_077.sdocx--><p><span style="font-family: Neucha; font-size: medium;"> To remove a tick from a person or pet, grip the mouthparts, as close to the skin as possible & pull straight upwards, with fine-nosed tweezers or a specialised tick removal tool. Do not irritate the tick (e.g. with ointment/ flames) as this can cause it to regurgitate dangerous bacteria into the bloodstream. </span></p><p><span style="font-family: Neucha; font-size: medium;">Do not twist it yourself as this can cause the mouthpart to break off and remain in the skin (if using the 'tick twister' tool, it removes it effectively; carefully follow instructions on any tool you have - & add one to your first aid kit, they make removal MUCH easier).</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 To safely dispose of a removed tick, DO NOT BURST. Sticky tape is a good option - as shown here. Carefully ensure the tape is firmly stuck all around the tick for disposal, or to send for testing. </span></p><p><span style="font-family: Neucha; font-size: large;">(This is now in a sealed sandwich bag, ready to be sent away. Sometimes local vets will accept ticks to send for testing. You can search online where to send it in your area.)</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCGuD4k7G2GulWUifcGChvZHR5mvRuirR_RxrqwVjeMY-7UXpJEsJVmUmonwGM_cqRPLOGbhLdX9kTYqxpreDzVt8RzdiKwUmGuxsqRtwAQJFECkT9h0aZGL_WR253iF3BkODNWVyVr90a9MUdYsZ9_rWVJReXurG1CyzW8LxUj7MXVF6G7D5aXPXk/s973/20220508_115322.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Neucha; font-size: medium;"><img border="0" data-original-height="818" data-original-width="973" height="269" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCGuD4k7G2GulWUifcGChvZHR5mvRuirR_RxrqwVjeMY-7UXpJEsJVmUmonwGM_cqRPLOGbhLdX9kTYqxpreDzVt8RzdiKwUmGuxsqRtwAQJFECkT9h0aZGL_WR253iF3BkODNWVyVr90a9MUdYsZ9_rWVJReXurG1CyzW8LxUj7MXVF6G7D5aXPXk/w320-h269/20220508_115322.jpg" width="320" /></span></a></div><span style="font-family: Neucha; font-size: medium;"><br /></span><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 The lighter part of the tick shows it has fed (it's swollen with blood). If this bursts, there is a small risk of infection if any splatter gets into an open wound, or, e.g. hits your eye. Be careful. </span></p><p><span style="font-family: Neucha; font-size: medium;">The size of the tick can indicate roughly how long it was attached:</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM7-b0mVzA_sVgPsP6mX9IJlOjxjfrrRM9zX90GugTYxKQlhvNp_GDm169SnojYd5hElUjNndCVZyL5_28PZZBvqRaZgtLrnliNJQB8i5BhCxhVqYPgI-o4kakH_8ShPrLkH8CDG7w17IIQq3yM5fNTMFkXfGaKKbSkfjyr-yfp0awV0JAN-0pJfmA/s720/Screenshot_20220508-115814_Google.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Neucha; font-size: medium;"><img border="0" data-original-height="482" data-original-width="720" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM7-b0mVzA_sVgPsP6mX9IJlOjxjfrrRM9zX90GugTYxKQlhvNp_GDm169SnojYd5hElUjNndCVZyL5_28PZZBvqRaZgtLrnliNJQB8i5BhCxhVqYPgI-o4kakH_8ShPrLkH8CDG7w17IIQq3yM5fNTMFkXfGaKKbSkfjyr-yfp0awV0JAN-0pJfmA/s320/Screenshot_20220508-115814_Google.jpg" width="320" /></span></a></div><p style="text-align: center;"><span style="font-family: Neucha; font-size: x-small;">(Image from CDC website, via Google)</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 Wash your hands thoroughly afterwards.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 Make sure your pets are flea & tick treated; but continue to check them - tick treatment is not a repellent, it slowly kills ticks as they feed. Be aware, if ticks drop off alive, they may then feed on humans.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 So... TICK CHECK! Always!</span></p><p><span style="font-family: Neucha; font-size: medium;">Ticks like to crawl into safe, warm crevices in the body - check EVERYWHERE.</span></p><p><span style="font-family: Neucha; font-size: medium;">Check kids at bathtime, & teach them how to check themselves too.</span></p><p><span style="font-family: Neucha; font-size: medium;">(Be aware of any tiny freckles you have - I have one on the back of my leg that has given me a fright several times in the past!! Using your hands as well as your eyes while you check will ensure you feel an embedded tick.)</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;">🕷 Wear repellent outdoors (Autan is best in the UK) & always tick check carefully when you get home.</span></p><p><span style="font-family: Neucha; font-size: medium;"><br /></span></p><p><span style="font-family: Neucha; font-size: medium;"><span>🕷 Remember - ticks are tiny. They also like to crawl into crevices in the body where they can hide, like under the arm or in the groin - check EVERYWHERE!</span><!--/data/user/0/com.samsung.android.app.notes/files/clipdata/clipdata_bodytext_220508_120605_077.sdocx--></span></p><p><span><span style="font-family: Neucha; font-size: medium;"><br /></span></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMYCZxSlGyRhutI9_Pi8mj8aw53tD-RI4OcOT7dFs5gUcjN6i3y3Shz-RFrjIHeS7PYi0TWjBIWvOtyfQsk_pwV30_rYbx2G4_NokUVGWC7We3BUdV9b5RAuKXclDsRVejPa9L5Cj2Ky1WYP9VCTosGL3RgDRD5mGsH-hxXZECqyp60Mymmr8BOkim/s720/Screenshot_20220508-120214_Chrome.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Neucha; font-size: medium;"><img border="0" data-original-height="622" data-original-width="720" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMYCZxSlGyRhutI9_Pi8mj8aw53tD-RI4OcOT7dFs5gUcjN6i3y3Shz-RFrjIHeS7PYi0TWjBIWvOtyfQsk_pwV30_rYbx2G4_NokUVGWC7We3BUdV9b5RAuKXclDsRVejPa9L5Cj2Ky1WYP9VCTosGL3RgDRD5mGsH-hxXZECqyp60Mymmr8BOkim/w320-h276/Screenshot_20220508-120214_Chrome.jpg" width="320" /></span></a></div><span style="font-family: Neucha; font-size: medium;"><br /><span><br /></span></span><p></p><p style="text-align: center;"><span><span style="font-family: Neucha; font-size: x-small;">(Image also from US CDC website)</span></span></p><p style="text-align: center;"><span><span style="font-family: Neucha; font-size: medium;"><br /></span></span></p><p style="text-align: center;"><span><span style="font-family: Neucha; font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Neucha; font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipPxcXQfyhMuSz9f0bozMqPdi1USG6uzpQEF9MyeZRQDsbzca7zf4rJYvT0U0tTNgduU49YwjC_a0DmRYtRkBZIXqUZ-SmCxvXnrjiZqrQmzVP62vtDMoCHZN_3JMCVhVwdfnlY86g07pkSkG-QbprtiXlY7gPul1ng_bv9f1O8_K0gTL-udCUuZ3N/s720/Screenshot_20220508-121656_Google.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="407" data-original-width="720" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipPxcXQfyhMuSz9f0bozMqPdi1USG6uzpQEF9MyeZRQDsbzca7zf4rJYvT0U0tTNgduU49YwjC_a0DmRYtRkBZIXqUZ-SmCxvXnrjiZqrQmzVP62vtDMoCHZN_3JMCVhVwdfnlY86g07pkSkG-QbprtiXlY7gPul1ng_bv9f1O8_K0gTL-udCUuZ3N/s320/Screenshot_20220508-121656_Google.jpg" width="320" /></a></span></div><span style="font-family: Neucha; font-size: medium;"><br /><br /></span><p></p><p><span style="font-size: 17px;"><br /></span></p>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-74512811549962912322022-04-13T19:39:00.001-04:002022-04-13T20:02:04.232-04:00 Fundraiser | Love Your Brain | Inverted Perspective<p><span style="font-family: Neucha, cursive; font-style: italic; font-weight: 700; white-space: pre-wrap;"><span style="font-size: medium;"><br /></span></span></p><p><span style="font-family: Neucha, cursive; font-style: italic; font-weight: 700; white-space: pre-wrap;"><span style="font-size: large;">“The greatest danger for most of us is not that we aim too high and we miss it, but that we aim too low and we reach it.”</span></span></p><span id="docs-internal-guid-35495d45-7fff-aedc-9cf9-8f0fc2bfa483"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;"> ~ Michelangelo</span></span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">For various reasons, it has been a long time since I have posted anything on my blog. For a long time, I was unable to use screens due to a TBI (traumatic brain injury) I sustained in 2019, following an earlier concussion in December 2015, when my car tyre blew out. This also caused a major Lyme relapse. I completed Lyme treatments (2017-19) & I’m currently in remission with no Lyme symptoms, but some lingering fatigue remains. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">Throughout, I continued my shoulder rehab (watch this space, I have more to say!); I also had neuro rehab for my TBI from 2019, as well as PT treatment for my neck & jaw.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">Eventually, after finding an incredible surgeon, who promised he would try to find a solution, in August 2021 (as I’ve documented on social media) I had ACDF surgery - anterior cervical discectomy & fusion (C4-C6) - to stop the discs compressing my spinal cord in my neck & to remove instability.</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">It’s been a hell of a decade: challenges, hard work, progress… repeat.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">(Photos below.)</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The </span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">quote</span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> at the top of this post is one that I have really focused on during these difficult few years. It continues to resonate with me in everything I do. In the past few years, mindfulness, meditation, & yoga have all played key roles in shaping my journey. I am now hoping to continue this path by completing qualifications that will help me offer these supportive tools to others. I’m fundraising for </span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Love Your Brain</span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, the organisation which offers support to people with brain injuries as well as training courses (more below).</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">If you know me, or have read any part of my blog, you will know that determination is just in me. Sometimes I’m not entirely sure where it comes from - but it’s there, shoving me onwards, despite my conscious (sane, rational) brain protesting at times. It’s not been an easy journey, & I continue on this winding path of rehab, recovery, and healing, but I have never stopped aiming high - and it has been worth every crazy moment; every effort to keep moving forward; and every annoying insistence to medics focused on ‘acceptance’ that I would not stop looking for ways to continue to improve.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzhodS-a6y0viBXYh2DxTcaIemxou7INkyLoFilzyO6IKvMnJnS-EYTMqg18G6dUm18gtXQ_yI7KKgTNcDG54bSIsRnmJGhxd6Kmt1lq34JJgBC9Dw3WYGWBcvgEi2ZIKCiRzzI2xUtGo5mwlsjpiomx_tz_nFr2d09ckppYvywrgGZ0GRRLUXHTR3/s500/don't%20be%20realistic.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="412" data-original-width="500" height="264" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzhodS-a6y0viBXYh2DxTcaIemxou7INkyLoFilzyO6IKvMnJnS-EYTMqg18G6dUm18gtXQ_yI7KKgTNcDG54bSIsRnmJGhxd6Kmt1lq34JJgBC9Dw3WYGWBcvgEi2ZIKCiRzzI2xUtGo5mwlsjpiomx_tz_nFr2d09ckppYvywrgGZ0GRRLUXHTR3/w320-h264/don't%20be%20realistic.jpg" width="320" /></a></span></div><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /><span style="font-size: medium;"><br /></span></span><p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">There’s a lot I could - & will - write moving forward, but I am returning to my blog as my health improves enough for me to return to life and (surprise!) I decided to start by throwing myself in at the deep end…</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">As part of my treatment, and understanding how to live with a brain injury, I completed two <b><i>Love Your Brain Yoga, Mindfulness, & Meditation courses </i></b>run by <b>Love Your Brain</b>, a charity founded by US Olympic Snowboarder Kevin Pearce after he sustained career-ending TBIs. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">All classes are free for people living with brain injuries - including those caused by Lyme Disease. My worlds collided in those courses. </span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">These classes, and the tools and skills I learned, and continue to develop, have helped me with </span><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">all</span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> the health challenges I have face, and those I still live with.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Looking back several years to </span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;"><a href="http://outofthelymelight.blogspot.com/2013/06/meditation-failure.html" target="_blank">this post: Meditation Failure</a></span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, I would never have believed where this would all take me! </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">My perspective has changed in many ways. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">Follow my journey @inverted__perspective on Instagram.</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Diving in</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Last week I made a last-minute decision to apply for a </span><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Love Your Brain Mindset </span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">course. After completion, I will (hopefully!) be qualified to help provide the same valuable tools and support to others as I was fortunate enough to receive at a critical time. I am also hoping to complete a<b><i> LYB Yoga Teacher </i></b>for TBI course in June. </span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">I applied to the LYB Mindset course last Tuesday, was accepted on Wednesday, started on Thursday, and have since completed 6 modules!</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">I've been awarded a partial scholarship for the cost of this course and I'm aiming to raise </span></span><span style="white-space: pre-wrap;"><b><span style="font-family: Neucha; font-size: medium;">£525 ($675) to cover fees for both courses.</span></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="white-space: pre-wrap;"><b><span style="font-family: Neucha; font-size: medium;">All funds raised will go to LYB.</span></b></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">If you can support me, & Love Your Brain, in any way - donations &/ or sharing my post, blog, or fundraiser link - it would be greatly appreciated.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">My GoFundMe page is here: <a href="https://www.gofundme.com/f/love-your-brain-foundation?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp_guide_do&member=18708335" target="_blank">Love Your Brain Fundraiser</a></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Fundraising aim: </span><span style="background-color: white; font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">£</span><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">530 ($675) </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">All money raised will go to the Love Your Brain Foundation to support the amazing work they do around the world - in classes & online - to support people with brain injuries.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span>(N.B. GoFundMe automatically adds a 'tip' of 15% to your donation. This money goes to GoFundME. It is optional & you can select to opt out.)</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">You can read about this amazing organisation here: <a href="https://www.loveyourbrain.com/">https://www.loveyourbrain.com/</a></span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">As an extra thank you, I will enter all donors into a random name generator to pick one winner for this handmade ( - by me: gfmjewellery) Swarovski crystal, pearl, & semi-precious gemstones wrap bracelet. </span></span></p><span style="font-size: medium;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvt7IckaPDa_OsR9zp-OwQ_YI57GlsZzgm99Z0ZScbeqyM19_6D3w-aKnKEqK9_sY0iPU97qCr1h0t1VYIQJe24BWtwfwv5RNJur9B7Wvw0ly6s1G2pdEEEdluLXoTDCco5hrjLDAyA24B1YNP8Fs1URbmXGANW0q8eZCiiYBYullAtFWQmVvGLYA5/s1600/LYB%20Fundraiser%20Bracelet%20Collage.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvt7IckaPDa_OsR9zp-OwQ_YI57GlsZzgm99Z0ZScbeqyM19_6D3w-aKnKEqK9_sY0iPU97qCr1h0t1VYIQJe24BWtwfwv5RNJur9B7Wvw0ly6s1G2pdEEEdluLXoTDCco5hrjLDAyA24B1YNP8Fs1URbmXGANW0q8eZCiiYBYullAtFWQmVvGLYA5/w320-h320/LYB%20Fundraiser%20Bracelet%20Collage.jpg" width="320" /></a></div><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy-jnEUW9Q26fWeROajP4YX4CRw2fxuewMQqZIZgu9HkothFO5qdtBKTP0FO9KTRW_bF4rcfF7f2L3vq3-3FA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">If I exceed my target, and raise extra money for LYB, I will offer a second prize draw for a custom piece of jewellery - to be completed after the course ends!</span></span></p><span style="font-size: medium;"><br /><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">My fundraiser is now live and will run until Saturday April 16th (midnight UK time; 7pm US Eastern).</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">The winner will be selected via a random generator & announced on Sunday April 17th.</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: medium;">As for further updates, they say a picture is worth a thousand words, so here are a few snapshots of my journey to date - and I promise more blog posts coming soon! </span></span><span style="font-family: Neucha, cursive; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><span style="border: none; display: inline-block; height: 624px; margin-left: 1em; margin-right: 1em; overflow: hidden; width: 624px;"><img height="488" src="https://lh5.googleusercontent.com/LA_D-jKt8Z-BrGBc1v6WiB0eSOl7zWeYx57HXKTlRmQx0YEi9knn9elkOEyJmuoQhG6uebiHsotmAVeDXC6MxDqsvI1LjzpxswtSAadIhq7iK5ZdeU7x5RigxTssr1pDpzGKvIVv=w488-h488" style="margin-left: 0px; margin-top: 0px;" width="488" /></span></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-size: medium; white-space: pre-wrap;">As always, I’ll end with a quote:</span><span style="font-family: Neucha, cursive; font-size: x-large; white-space: pre-wrap;"> </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.”</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Neucha, cursive; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;"> ~ Socrates</span></span></p><div><span style="font-family: Neucha, cursive; font-size: 14pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-53808836706178988122018-05-31T20:30:00.000-04:002018-08-07T06:21:22.317-04:00Lyme looks like...<div style="text-align: center;">
<span style="color: lime; font-family: "times" , "times new roman" , serif; font-size: large;"><i>Lyme disease awareness</i></span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">One last thing I really want to draw attention to. I've written it before, it's known to be a fact by anyone who knows <b><i>anyone</i></b> with Lyme disease - an not usually before...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOAsRgtk0K0zdVitni5en5brxE_GiMEkDC0P8Kcn2oBdPDfr5Cn_pnVAve8dbw2o4MFQM6sPppD2dKYP-i7gxSW_ONnRt3uKrCfdjhyphenhyphen-UEspnAEJE-dS6CNYrCKjmUbG9JGch0Rn1V2fI/s1600/20180807_051721.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1271" data-original-width="1059" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOAsRgtk0K0zdVitni5en5brxE_GiMEkDC0P8Kcn2oBdPDfr5Cn_pnVAve8dbw2o4MFQM6sPppD2dKYP-i7gxSW_ONnRt3uKrCfdjhyphenhyphen-UEspnAEJE-dS6CNYrCKjmUbG9JGch0Rn1V2fI/s400/20180807_051721.png" width="332" /></a></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><b>Lyme disease is an invisible illness</b></span><br />
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">This does make it difficult to understand - trust me, it makes it difficult to <b>LIVE</b>, never mind understand. </span><br />
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">Do I want someone to say, </span><br />
<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><i>"You look great today!"</i></span><br />
<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">... erm, well I thought I wanted it, but I feel like the room is spinning, my head is buzzing, a migraine is threatening, and I took double my anti-nausea meds.... <i>GREAT</i> you say? <b><i>Really?</i></b></span><br />
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">Ok, so I want someone to acknowledge how awful I feel.. [usually my mum...]</span><br />
<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><i>"You look awful today..."</i></span><br />
<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">...<i>AWFUL</i>... I know I feel awful, but do they really need to <b><i>TELL ME... OUT LOUD?!</i></b></span><br />
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">It's complicated...</span><br />
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">These are all photographs of me taken in the past year:</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">A couple in bed: bad days, also I think I'm infusing meds in one.</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">In others I am ready to go out:</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><i>I <b>will</b> do something normal.</i></span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><i>I <b>will</b> enjoy this.</i></span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><i>I <b>will not</b> throw up in the car...</i></span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><b>Make up</b>: mask, concealer, eyes painted open</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><b>Cap</b>: I've not washed my hair... But isn't my 'feminist' pin cute?</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><b>Braid</b>: I've not washed my hair, but I'm still at the dry shampoo stage.</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><b>Sunglasses</b>: either you're not seeing the bags under these eyes; or my eyes are <i><b>not</b></i> tolerating any bright lights today.</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;"><b>Lipstick</b>: a secret I read in a magazine - bright lips distract attention from anything else! (Seriously... it works, no other makeup required... although maybe sunglasses... and a cap 😉)</span></div>
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<span style="color: #45818e; font-family: helvetica neue, arial, helvetica, sans-serif;">Really, when it comes down to it, we don't want to be ill. We don't want to 'look sick'; but we also don't want to be doubted. And no, sorry, I don't know what you're actually supposed to say to a friend. Just be nice. Believe them. And take chocolate. Or herbal tea. </span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com3tag:blogger.com,1999:blog-1139283891068820968.post-3617702037053745172018-05-29T05:31:00.000-04:002018-08-07T05:35:11.121-04:00Lyme awareness: Lyme is...<div style="text-align: center;">
<span style="color: lime; font-family: "times" , "times new roman" , serif; font-size: large;"><i>Lyme disease awareness</i></span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A few awareness points for 2018:</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNfJFXFCSzB-qrykxMf51LSLaSFQ27cdSMNsiq5KL6qvLaZfkAye0e7RKVGXsRRKE4iUfKi5NMBF9PdcyaX4tlotgBqNpd9-fTLSKvyWj1M_CCYgmJH-9HrjwVmL8GKhOpQU0KbUfP650/s1600/Screenshot_2017-05-31-08-16-39-1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="938" height="385" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNfJFXFCSzB-qrykxMf51LSLaSFQ27cdSMNsiq5KL6qvLaZfkAye0e7RKVGXsRRKE4iUfKi5NMBF9PdcyaX4tlotgBqNpd9-fTLSKvyWj1M_CCYgmJH-9HrjwVmL8GKhOpQU0KbUfP650/s400/Screenshot_2017-05-31-08-16-39-1.png" width="400" /></a></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Lyme symptoms can vary greatly from person to person. It depends on what areas of the body the infection attacks. Rather like when some people get a bad cold they end up with a sore throat, and others may end up with sore ears - we are all unique. This can make it especially difficult for doctors to diagnose, especially when lab tests are not reliable, and even moreso, when they are not done in the small window of time that *may* show an immune response to borrelia infection.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The list above is nowhere close to exhaustive - close to 200 individual symptoms have been linked to Lyme disease (see <a href="http://ilads.org/">ILADS.org</a> or <a href="http://lymediseaseuk.com/">lymediseaseuk.com</a> for further details). </span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">However, imagine the list described, and imagine feeling all of that at once. Add on the worst hangover you can remember, and then imagine you ran a marathon too. You're close, but not quite there.</span><br />
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<span style="color: lime; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>#LymeDiseaseAwareness</b></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-77862177897978250932018-05-23T15:30:00.000-04:002018-08-07T08:03:45.138-04:00Realities: Lyme treatment<div style="text-align: center;">
<span style="color: lime; font-family: "times" , "times new roman" , serif; font-size: large;"><i>Lyme disease awareness</i></span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The </span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A few awareness points for 2018...</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">How many times does anyone really want to hear...</span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> - get treatment fast</span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> - wear insect repellent </span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> -<b> "TICK CHECK!!"</b></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>❓❔❓❔❓❔❓❔❓❔❓❔</b></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Definitely enough times for it to reeeeallllly sink in - because, let's get personal today - PICC lines are not fun. Neither is Lyme. So let's just reiterate:</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><i>-You don't want systemic Lyme disease. Full stop. Just no. You don't even have to consider the PICC line: obviously you don't want a debilitating, poorly understood, difficult to diagnose, impossible to cure (for sure) illness. OBVIOUSLY that goes without saying.</i></b></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><i>BUT STILL...</i></b></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><i>-You don't want a PICC line (personally I've not had any other kind, but really, you don't want *any* kind of line)</i></b></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>So, again:</b></span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>INSECT REPELLENT! </b></span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>IMMEDIATE TREATMENT! </b></span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>REMEMBER! </b></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's not just a case of suffering through a simple (or guess who got lucky.... complex) PICC insertion (see post from last June) & then zapping some meds into your line every day... there's:</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZkHSBGbYz5uVmnbqXxW4Yk34MdV9yzHzsQY7u1DrxJdenxDwlAurpoYM21R3LLEisLgOCl24FH3ZmIQ1Aep9R4A6hmzqQeCAbAB6f-FOxfBHllBji1CXBV6e7b5qter70MZMddIQSHF4/s1600/2018-08-07_03.38.08.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZkHSBGbYz5uVmnbqXxW4Yk34MdV9yzHzsQY7u1DrxJdenxDwlAurpoYM21R3LLEisLgOCl24FH3ZmIQ1Aep9R4A6hmzqQeCAbAB6f-FOxfBHllBji1CXBV6e7b5qter70MZMddIQSHF4/s400/2018-08-07_03.38.08.jpg" width="400" /></a></td></tr>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">1&2. The inevitable irritable skin from constant dressing changes, skin cleaning/ disinfecting/ sticky sticky itchy dressings... and a tube coming out your arm... vein.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">3. The body trying to heal around a hole it doesn't want to have there - because that's it's job, right?! I didn't zoom in too much here (on purpose, you're welcome); but you can see the slight crusting around the edge of the line - it has to be scrubbed away at each dressing change too. And THAT'S fun. 😒</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">4. Just a reminder from my 'PICC placement pic' - it is not a case of 'hello vein, meet line (tubing?)...... hello heart, meet line' 😊. Sure, most PICC placements are nothing to freak out about... (Hundreds of people have told me. Honest.)... they still involve some 'numbing' shots, some maneuvering through veins, into bigger veins and making sure the line rests exactly close enough to your heart for the meds to get in the right place, and exactly far away enough for it not to 'tickle' your heart. (I'm lucky I didn't experience this, but I'm going to bet 'tickle' is one hell of a euphemism!) </span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Then it has to stay there, thankfully with a little wiggle room, as - again - the body should reject foreign objects, so it can push it out entirely, or - in my case, thankfully - just a little wiggle over time (carefully marked by dots, wiggle is also a euphemism; my line: 39cm with 2cm leeway - this IS an exact science).</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And really - does that look like a happy arm? It was not!</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Then comes <b><i>expecting the unexpected</i></b> - because it always seems to happen, randomly!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwSwP0BnBe5vvdoVoh2zPMl0Hk10ozaQheu7GXiK6mZ3208MGcQIxfNKw_RRK6yfU1VLbWCmFSHQCI7nqWxj9ROmfuZg9z63BJkI6hIXeWzBca_4eHS7B_m2Y-0I0Icjbi8UQq96fv0jY/s1600/2018-08-07_03.41.19.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwSwP0BnBe5vvdoVoh2zPMl0Hk10ozaQheu7GXiK6mZ3208MGcQIxfNKw_RRK6yfU1VLbWCmFSHQCI7nqWxj9ROmfuZg9z63BJkI6hIXeWzBca_4eHS7B_m2Y-0I0Icjbi8UQq96fv0jY/s400/2018-08-07_03.41.19.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Life adjustments</b></span></td></tr>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">1. Creativity required at times. One day I had to take a full bag home for the next day (not frozen, or unmixed):</span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><i>"Keep. It. Upright."</i></b></span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Umm.... ok. </span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Let me remind you:</span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Left arm has the PICC in it... please remember that's my <b>good</b> arm! No holding that bag up with either arm. Hello car-mirror-IV-hook.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And perfectly chosen socks for that day. </span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Actually - it's AMAZING how many things can be fashioned into some kind of IV poles... lamps, curtain rails, coathangers, scarves, brooms...</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">2. While the body may try to push out PICC lines, scab over them, react angrily to being scrubbed and covered all the time, sometimes it just says, NOPE. NO MORE.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This day, my poor, poor body did not want to give up any blood (did I mention the regular blood draining to check the medications aren't destroying other organs? Another reason you really don't want systemic Lyme /a PICC line/ these awesome meds). Occasionally my line & body work together and give my doctor or nurse 'decent' blood, suitable for testing, out the line, o needles required. Wonderful days!* There were other days where the blood looked perfectly fine to me - apparently not. Those are needle days.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Then there was this day. On this day, my veins were giving out nothing. The needles were in (SEEEEEE the holes?); but there was no blood. My nurse and I literally stared at the little butterfly needle, clearly in my swollen vein and not a drop of blood came out. Twice. Until, of course, she (kindly) gave up for the day. Then there was blood, and bruises, and ice from the coffee shop...</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">An unhappy body is another reason not to want a line - your body definitely doesn't want one either!</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: #45818e;">So... seriously: </span></span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><span style="color: lime;">#LymeDiseaseAwareness</span></b></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-72894703516946985692018-05-18T13:19:00.000-04:002018-08-07T03:24:01.062-04:00Ticks and dinosaurs<div style="text-align: center;">
<span style="color: lime; font-family: "times" , "times new roman" , serif; font-size: large;"><i>Lyme disease awareness</i></span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.</span><br />
<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A few awareness points for 2018.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Ticks have a few - million - years on us! That's a lot of time to adapt to environments, spread throughout the world - e.g. migratory bird patterns are thought to be responsible for carrying ticks across continents... although maybe they were there first too. </span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Again - tick prevention is best! Use repellent when outdoors and make sure it says it specifically repels *TICKS* on the label.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Ticks carry, and transmit, <i>borrelia burgdorferi</i>, the bacteria that causes Lyme disease. The bacteria have a 'spiral shaped tail' which they use to bury themselves deep in the body where they set up colonies and excrete biofilms to 'hide' from the immune system (<i>plaque is a biofilm - think old toothpaste adverts with the bacteria hiding under the plaque... imagine it deep inside the body, microscopic...</i>).</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The importance of immediate treatment for a tick bite cannot be overstated. The bacteria quickly try to get to 'safer' parts of the body, where it is difficult to reach them with medications. Treating an immediate infection - acute Lyme disease - should* kill the bacteria while they are in this acute phase, and when some bodies may launch an immune response (some people never produce antibodies; the reasons are unknown). If you can kill any bacteria before they travel throughout your body, the prognosis is generally good. </span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">(*There are documented cases of people who received treatment quickly, but still developed systemic Lyme disease; however the quicker the treatment, the lower the risk.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">After the bacteria enter the disseminated stage and the illness becomes systemic Lyme borreliosis, it becomes much more difficult to reach, and impossible - with current medical testing - to know if the infection is, or can be, eradicated from the body. More Lyme experts, who have been working in Lyme endemic areas (mainly in the Eastern U.S.) for decades, are now using terms 'relapse' and 'remission' for patients who are battling systemic Lyme disease.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Please, use this information - don't wait, seek appropriate treatment immediately if you are bitten, or if you suspect you have been bitten. One bite truly can change your life.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: lime; font-size: large;"><b>#LymeDiseaseAwareness</b></span></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com1tag:blogger.com,1999:blog-1139283891068820968.post-7545449419865886712018-05-14T18:00:00.000-04:002018-08-07T02:57:10.067-04:00Tick Awareness<div style="text-align: center;">
<span style="color: lime; font-family: Times, Times New Roman, serif; font-size: large;"><i>Lyme disease awareness</i></span></div>
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<span style="color: lime; font-family: Times, Times New Roman, serif; font-size: large;"><i><br /></i></span></div>
<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.</span><br />
<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">A few awareness points for 2018...</span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The CDC actually released these images on social media. </span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">How many ticks can you find on the poppy seed muffin?</span><br />
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<span style="color: #45818e; font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Clue: there are 5 (yes FIVE) ticks on this muffin. </span><br />
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<span style="color: #45818e; font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Have you found them all?</span><br />
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<span style="color: #45818e; font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">S</span><span style="color: #45818e; font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">croll down for the 'reveal'.</span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Look closely - can you see the legs? </span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Would you find them on yourself...? Or on your child, or your pet? Ticks are tiny - they can be as tiny as this full stop ➡ .</span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Know how to remove ticks if you live in an area with ticks. (That's across the UK now - search 'The Big Tick Project' for updated tick maps produced by Bristol University. Remember mapped ticks are only from voluntary reporting by vets.)</span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Most hiking and outdoors stores sell tick removal tools - the easiest way to remove these tiny ticks. Importantly - never squash or smother a tick, always make sure you remove it by its mouthparts, and make sure no part is left in. See your GP if you are bitten and make a note of the new NICE guidelines (for England & Wales) in terms of how any tick bite should be treated.</span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Prevention is better than cure - wear repellent. </span><br />
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<span style="color: #45818e; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Also, remember, we don't actually have a cure, so speedy treatment is essential! </span><br />
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<span style="color: lime; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><b>#LymeDiseaseAwareness</b></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com1tag:blogger.com,1999:blog-1139283891068820968.post-28674009247855487542018-05-05T20:00:00.000-04:002018-08-07T02:32:16.731-04:00MAY is Lyme Disease awareness month<div style="text-align: center;">
<span style="color: lime; font-family: "times" , "times new roman" , serif; font-size: large;"><i>Lyme disease awareness</i></span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A few awareness points for 2018...</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-weight: bold;">All around us dangers wait,</span><br /><span style="font-weight: bold;">Worse than any thriller:</span><br /><span style="font-weight: bold;">Somewhere hidden in a field</span><br /><span style="font-weight: bold;">There lurks a cereal killer.</span><br /><span style="font-weight: bold;">~Simon Andrew</span></span></td></tr>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">While this is an amusing little play on words about field mice - spotted in a local eatery, south of Edinburgh, of course my mind went to the hidden 'serial killer' - also hiding in fields... and in mice: <b>TICKS!</b> Mice make good hosts for ticks. They offer food, heat, and usually find themselves a cozy home for the winter - ticks are brought into our homes and gardens by pets and other small mammals or birds. </span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Always remember to TICK CHECK yourself, kids, and pets when you have been outside - hiking, or simply playing in your own garden.</span><br />
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And while wordplay is fun under artistic licence, it IS important to know the name of the disease:</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">LYME BORRELIOSIS</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Names are important: to be taken seriously, it is important that the medical community, and the general community do know the correct term.</span></div>
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<span style="color: #45818e; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Share what you know, you could save someone's life.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: lime; font-size: large;"><b>#LymeDiseaseAwareness</b></span></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com1tag:blogger.com,1999:blog-1139283891068820968.post-57505357756188144702018-02-28T23:00:00.000-05:002018-03-02T06:53:17.754-05:00Rare disease day... the perfect date!<br />
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Today (Feb 28th) is <b>Rare Disease Day</b> - it also happens to be exactly 6 years ago since I had my<b><i> scapular muscle reattachment surgery</i></b> (very rare! I was the 270th person in the world to have the surgery, performed by the surgeon who created it & was the only surgeon performing it in 2012). It was the first step on what is still a long journey of rehab & recovery.</div>
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<i><span style="font-size: x-small;">(N.B. I will try to fix these photos at some point, my photo editing programme on my tablet kept stopping; they do show my dimmed screen.... explained below. Not deliberate!)</span></i><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><b>'Shoulder stuff'</b></span></td></tr>
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I write this as I am infusing IV antibiotics into the PICC line I've now had for 9 months to treat <b><i>Lyme Disease</i></b> - another rare disease... or under-diagnosed, even Google is a bit confused here: </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnjXhaO8aaXLrryuJQaCXNYJU3ktEwOnyjysvTYQ28MRj8TRtchrSzMlw2B6GSVB0sspZM2W7gOdRnQ6eelJfvaTzDHjF7i5fMCd3Ex0CPmEdyOUyM4yfJHLAvD28J2vGxxEm_z-ZlpA4/s1600/Screenshot_2018-03-02-04-09-01-5.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="391" data-original-width="400" height="312" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnjXhaO8aaXLrryuJQaCXNYJU3ktEwOnyjysvTYQ28MRj8TRtchrSzMlw2B6GSVB0sspZM2W7gOdRnQ6eelJfvaTzDHjF7i5fMCd3Ex0CPmEdyOUyM4yfJHLAvD28J2vGxxEm_z-ZlpA4/s320/Screenshot_2018-03-02-04-09-01-5.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: Arial, Helvetica, sans-serif;">Newest Lyme treatment - hard-going, but I think I am slowly...<br />tentatively... making some good progress</span></b></td></tr>
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In the past 6 years, following my shoulder surgery, as we 'peeled back the layers of the onion'; I've seen many doctors, surgeons, physiotherapists & other medical practitioners. I've been given various other rare diagnoses including <b><i>Thoracic Outlet Syndrome & Complex Regional Pain Syndrome (CRPS/ RSD)</i></b>. All from a simple slip on the stairs, 'saving myself' as my body weight hung and torqued from one arm - my once-strong arms, wrecked by several years of severe illness, combined with still-hyperflexible shoulders was a bad combination. On my list of identified injuries (suspected incomplete), some chronic or ongoing, others transient: '<b><i>inferior shoulder dislocation' </i></b>(0.5% of shoulder dislocations) - my arm stuck up in the air, still holding the railing about 3 inches higher than I can actually reach. One physiotherapist summed it up best:<i><u> "if you didn't have skin, you'd have ripped your arm off." </u></i>Some other injuries that occurred in that split second:<b><i> brachial plexopathy</i></b> & '<b><i>overstretching</i></b>' injuries to my entire <b><i>upper right side nerve network;</i></b> <b><i>various muscle tears, pulls & strains; other soft tissue damage, including damage to my fascia; & bone injuries, including a scapular fracture</i></b> (they account for <5% of fractures, just FYI). <i><u>So dear every doctor I may see in my life - if you hear hooves, think freaking <b>unicorn</b>!!</u></i></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMq49lUy4C7y5h3UnqdlIOxu8WNRKYw84RhzV6pLoskDatm8D9aYKSzFkC3FSwPriIqKCcaNkxWZR7HpZqe8_kO4LakiIM8QkbhAwJTDxEzGqP0YY2pFxnNw1WHqAhjA_A90Pq87vxmdY/s1600/Screenshot_2018-03-02-04-08-47-1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1247" data-original-width="707" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMq49lUy4C7y5h3UnqdlIOxu8WNRKYw84RhzV6pLoskDatm8D9aYKSzFkC3FSwPriIqKCcaNkxWZR7HpZqe8_kO4LakiIM8QkbhAwJTDxEzGqP0YY2pFxnNw1WHqAhjA_A90Pq87vxmdY/s400/Screenshot_2018-03-02-04-08-47-1.png" width="226" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><b>Photo excuse: sometimes being ill means being stuck in bed.<br />(I did not seek this out for this post!! I did play with silly Facebook filters. 😜)</b></span></td></tr>
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Just to reinforce this point, in case it needed it, I've started to<b><i> sweat in colour.</i></b>.. neon yellow and light orange, specifically. I'm pretty sure it's linked with my nerve injury, which can cause very localized sweating; although initially I guessed it was perhaps linked to medication - nope! When I eventually decided to ask<b> </b><span style="font-size: 16px;"><b>another crazy question</b> </span>neither my mum (in her professional capacity), my doctor, nor my PT had ever heard of it. Although the response now is '<i style="font-size: 16px;">of <u>course</u></i> <i style="font-size: 16px;">you probably have it... if it's a thing' ..</i>. And guess what?! It is. It has a name: '<b style="font-size: 16px;"><i>chromhydrosis</i></b>' (the linguist in me would like another vowel in there). I hadn't even turned to Google, it seemed so ridiculous; a PT student searched for it and my PT laughed (maybe with kind exasperation?!) as he read<b><i style="font-size: 16px;"> "very rare, incidence unknown".</i> So, <span style="color: magenta; font-size: large;">UNICORN!!</span></b><br />
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Added to the messy shoulder + Lyme mix has been <i><b>post-concussion syndrome (/'minor traumatic brain injury' - 'minor' refers only to the amount of time spent unconscious /disoriented)</b></i>; a delayed diagnosis, but caused by my car accident 2+ years ago when my tyre blew out at 70mph and my car did an actual side somersault. <i style="font-weight: bold;">Isn't my karma fantastic?! Urgh!</i> I haven't really talked much about that. I don't think I've written about it on here at all. It's hard to think about, honestly; but getting some answers I didn't know I was looking for, and realising things I didn't know I'd been thinking (/worried) about has taken up a large part of the past few months. Essentially I spent almost 2 years just trying to 'power through' a <b><i>brain injury. </i></b>The post-concussion treatment I just started last November has been incredibly challenging, but it made me realise I have many head injury symptoms I hadn't even realised were symptoms - and they've been really severely affecting my life. Knowing they can be treated, and seeing some good improvements in some areas already has actually brought me a lot of relief. Not recognising symptoms in yourself is actually a symptom - I think that is a perfect definition of '<b>headfuck</b>' - in every way!</div>
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It's one (huge) reason I've struggled to blog much... or to read, write, or use my laptop - my 'screentime' has been limited to a smaller tablet screen, dimmed, with an app that removes blue light to prevent my headaches hitting the highest intensity. I'm seeing little signs of improvement, so hopefully I can keep that going and get back to writing again.</div>
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Additionally, the accident sparked my major Lyme relapse (not unusual); this really blurred the lines a lot between head injury symptoms, and fatigue & headaches that Lyme disease causes. There is a lot I need to untangle - physically and figuratively.</div>
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Ultimately, I am making progress. I'm extremely grateful for the help & support I have, and access to treatment that is working. I'm grateful for the doctors & medics who think outside the box and look for the crazy things when nothing else makes sense. Progress seems slow, but when I think of how things were a year ago, 2 years ago, 6 years ago... I am still moving forward, I am still working hard, and that is all anyone can ever do.</div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><b>Real progress! <br />Working a lot on flexibility, lower body strength, <br />and increasing my shoulder & arm movements with supported movement </b></span></td></tr>
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There are many types of<b> 'rare disease</b>' & they suffer from reduced funding & awareness because they are rare. Diagnosis takes longer, and treatment is often trial and error - I am well aware! The majority of illnesses are '<b><i>invisible illnesses</i></b>' (or can be hidden); please, where you can, be kind, choose to listen to someone & believe them, even if they 'don't look ill'; support is sometimes the best thing you can offer a friend.</div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com9tag:blogger.com,1999:blog-1139283891068820968.post-49588720263409607852017-11-09T02:00:00.000-05:002017-11-09T08:38:38.461-05:00Perfectly Imperfect<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>November mindfulness: Day 4 - 'Perfectly imperfect'</b></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>Taken from my instagram post:</i></span></div>
<span style="color: #0b5394;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">#mindfulnovember #perfectlyimperfect #day4 #mindfulness #scar #18staples #scapularsurgery #scapularmuscledetachment #shouldersurgery #myscarmystory #notoplasticsurgery #bodyshaming #lovetheskinyourein #blogger </span><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">#outofthelymelight </span></span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It wasn't difficult to think about what 'perfectly imperfect' made me think of - my <b>scar</b>.... obviously! Although this isn't exactly what I envisioned writing...</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Scars are my battle wounds. From injury to surgeries & beyond, they are part of me; they remind me how strong I can be - they are a sign of <b>strength</b> and <b>healing</b>. I blog to spread awareness of a rare injury; to show anyone can rise to life's challenges; to tell MY story; and hopefully, to help someone else. Recently I posted images <i>(see picture 4 below)</i> following cupping treatment showing my scar, plus swelling & bruising, as well as a skin reaction to my PICC line dressing adhesive (for Lyme disease IV treatment).</span> </div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">A <b>plastic surgeon</b> commented under my photo - <i>maybe I would be interested in her 'regime' (which from her instagram page seems to be <b>plastic surgery </b>and <b>botox</b>)</i>. My first thought was <i>why is a random doctor commenting on this?</i> Occasionally I've had comments or mesages/ emails specific to my surgery (it remains, over 5 years later, relatively unknown in the world of medicine), but this was different. I did look on her instagram page - it's filled with very stereotypical photographs and commentaries of facelifts, botox and 'we can <i>'fix'</i> you'-type stuff. I did not look further on her website, as suggested - I'm not interested, but the bigger implication was: <i><b>this imperfection could be fixed</b>. </i></span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Not something I have <b>ever</b> thought about, looked for, inquired about, written about, etc.<br /><br />I'll admit this hit hard. I have never hesitated in sharing my photos, or talking about my surgery; and I have built relationships and networks with other patients who have contacted me over the past few years. Suddenly I glimpsed it from a different perspective. Why? Does this <b>doctor</b> think I should hide my scars? Is it appropriate for <b>doctors</b> to target <b>other women </b><i style="font-weight: bold;">(or anyone?!) </i>on social media? Is it ethical? Is '<i style="font-weight: bold;">scar shaming' </i>a thing I've naively avoided thus far? In that initial moment I was stunned: shocked, then quickly I felt angry. Have I been cyberbullied by a <b>doctor</b>? I am <b>not</b> ashamed - I blog and post photos of the good, the bad, and the ugly. Reality. I don't intend to change that.</span> <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwFVJE0RoKQkNaOedhbU8ce7G-8F4YsgeQlbmTTAhcXnIKwF9-kAbENhICdq2AX_YJ8dCVe6IDjyEvccreyZMRn9AwNYVl1WF3Feu6qe3B92h8qbQg3BsdksBf6qM3O3PZQ_sfF4nlZMA/s1600/IMG_20171109_012512_296.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwFVJE0RoKQkNaOedhbU8ce7G-8F4YsgeQlbmTTAhcXnIKwF9-kAbENhICdq2AX_YJ8dCVe6IDjyEvccreyZMRn9AwNYVl1WF3Feu6qe3B92h8qbQg3BsdksBf6qM3O3PZQ_sfF4nlZMA/s400/IMG_20171109_012512_296.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><b>2012-2013</b><br />Pre-surgery -> healing over 1 year<br />(Bottom left, 2014, pre-surgery number 2)</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: Arial, Helvetica, sans-serif;">October 2017: post-cupping therapy</span></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEK6k6vAusrZ5bqDOQJHGIwgT6e_0Pug4BRe8qryS-Ch1CVPhVsLWzH7HEdjGY__e_JH_F423KSRpc0kQqHEk27z4Arn1DnJySx6WZSNnEN3h3OJEZxEc8odG2birq5e29kla7w4aD5w8/s1600/20171015_004303.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEK6k6vAusrZ5bqDOQJHGIwgT6e_0Pug4BRe8qryS-Ch1CVPhVsLWzH7HEdjGY__e_JH_F423KSRpc0kQqHEk27z4Arn1DnJySx6WZSNnEN3h3OJEZxEc8odG2birq5e29kla7w4aD5w8/s400/20171015_004303.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><b>October 2017: 1 day after cupping therapy</b><br />Can you see my scar?<br />Can you see my <i>symmetrical scapulae</i>? <br />I.e. the visible evidence of successful surgery...</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Collage from instagram with plastic surgeon's 'innocuous' comment</b></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEK6k6vAusrZ5bqDOQJHGIwgT6e_0Pug4BRe8qryS-Ch1CVPhVsLWzH7HEdjGY__e_JH_F423KSRpc0kQqHEk27z4Arn1DnJySx6WZSNnEN3h3OJEZxEc8odG2birq5e29kla7w4aD5w8/s1600/20171015_004303.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEK6k6vAusrZ5bqDOQJHGIwgT6e_0Pug4BRe8qryS-Ch1CVPhVsLWzH7HEdjGY__e_JH_F423KSRpc0kQqHEk27z4Arn1DnJySx6WZSNnEN3h3OJEZxEc8odG2birq5e29kla7w4aD5w8/s1600/20171015_004303.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEK6k6vAusrZ5bqDOQJHGIwgT6e_0Pug4BRe8qryS-Ch1CVPhVsLWzH7HEdjGY__e_JH_F423KSRpc0kQqHEk27z4Arn1DnJySx6WZSNnEN3h3OJEZxEc8odG2birq5e29kla7w4aD5w8/s1600/20171015_004303.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It's not blatantly nasty, but after looking at the instagram page (with no interest in browsing her website), it's very difficult to draw a different conclusion. I decided not to reply. Now, my instagram post, and this expanded blog post is my reply. It's not a reply to the doctor, it's my reply to anyone with the mindset that any part of the body is imperfect and needs to be 'fixed'.<br /><br />I was just going to ignore it until I stumbled across this <a href="https://www.buzzfeed.com/morganmurrell/sarah-hyland-roasted-magazine-plastic-surgery-accusations?utm_term=.btQLY7NnQ#.byxzbrndZ" target="_blank"><b>Buzzfeed article </b></a>about actress Sarah Hyland ('Haley' from <i>Modern Family</i>) the following week. She has a health issue and a magazine published an article speculating she had plastic surgery. Buzzfeed relayed her response (via twitter) to the magazine where she (rightly) raged at doctors speculating over her 'potential surgeries' and made clear the 'changes to her face' they were commenting on (<i>there's another controversial topic on its own.... how about people just stop doing that?</i>) were the result of "life saving medication". (I don't usually read celebrity news/ gossip, but apparently she has suffered with kidney disease since childhood and it was not 'new information'.) The timing was serendipitous.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I may not be famous, I may not have much 'reach' with my comments or my blog; but I think it is every bit as important for anyone, whether targeted publicly or quietly, like this, to stand up and say this is NOT OK. If one person reads this and takes away that message, then it is worth saying. </span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">And, FYI, my scar looks fucking awesome. My PT says it looks just like a plastic surgeon did it. <span style="font-size: x-large;">😏</span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><b>31 Dec 2014: Shoulder surgery 2 - capsular release</b></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">March 2012: <2 weeks post surgery</span></b><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Incision healing progress March 2012 -> March 2013</span></b></td></tr>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span><span style="color: #0b5394; font-family: Times, Times New Roman, serif; font-size: x-large;">"The scar meant that I was stronger than </span></div>
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<span style="color: #0b5394; font-family: Times, Times New Roman, serif; font-size: large;">~ Anaïs Nin ~</span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com2tag:blogger.com,1999:blog-1139283891068820968.post-47969267089366339822017-11-05T01:30:00.000-04:002017-11-09T06:36:27.128-05:00November Mindfulness: Comfortable<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>November Mindfulness: Day 3 'Comfortable'</b></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I think this really speaks for itself, but for a brief explanation of the most comfortable 'bed nest' in the world:</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Back/periscapular muscles spasm causing horrible, lasting pain (talking over a week of heightened pain here) & a very unhappy body...</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Nurse: <i>Don't sleep on that arm [with the PICC line in it]</i></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Physio: <i>Don't sleep on that shoulder if it's compressing nerves</i></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Body: .............. OUCH! C<i>an't sleep....</i> 😱!!!!</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Insomnia driven brain = best creative ideas EVER.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-large;">😴</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6WhEkyBfAMeMwC_j_U4vGs0haMOea2dpXqBCzDjpINVsIjFSU3M5MyAG_GQupPcEDRCEnPsmYQfYTTxL3KE4UXMZiL6z63dfaPiJrVigQvBj2R0nNm1ZWHKFMefp1203hHSksIFKFBi0/s1600/2017-11-08_04.52.00.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6WhEkyBfAMeMwC_j_U4vGs0haMOea2dpXqBCzDjpINVsIjFSU3M5MyAG_GQupPcEDRCEnPsmYQfYTTxL3KE4UXMZiL6z63dfaPiJrVigQvBj2R0nNm1ZWHKFMefp1203hHSksIFKFBi0/s400/2017-11-08_04.52.00.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><b><span style="font-size: x-small;">Comfortable</span><br /><span style="font-size: xx-small;">#bednest #pillowfort #icepacks</span></b></span></td></tr>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I literally put the cushion back on the chair 3 days in a row and ended up hauling it back to my bed in the middle of the night again. It's been back on the chair for several days now and my bed no longer looks like a nest. Every night since, I have stared at it and wondered if I'd be sleeping already if it was back on my bed....</span><br />
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<span style="color: #0b5394; font-family: Times, Times New Roman, serif; font-size: large;"><i><b>"Insomnia is my greatest inspiration."</b></i></span></div>
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<span style="color: #0b5394; font-family: Times, Times New Roman, serif; font-size: large;"><i><b>~ Jon Stewart ~</b></i></span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com3tag:blogger.com,1999:blog-1139283891068820968.post-64298090836433353142017-11-05T00:30:00.000-04:002017-11-09T06:04:39.739-05:00November Mindfulness: Nourished<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>November Mindfulness: Day 2 'Nourished'</b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Unsurprisingly, I'm playing catch up on day 2.... I took the photos, planned the posts... not sure I have a reasonable excuse for not even uploading a photo!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i style="font-weight: bold;">'Nourished'</i> did make me think a little bit more deeply about what true nourishment means just now. Yes, I eat well (even with the 'good' dark, organic, low sugar chocolate... mostly); I can't drink any alcohol because it would prevent antibiotics from working; I drink loads of water & herbal teas; I take various supplements - some antimicrobial, or ones that work in some way to complement the antimicrobial action of medications/ herbs, and others to boost antioxidants and aid in detoxing my body as it (hopefully) is so exhausted because it's clearing out nasty, twisted (ha ha... Lyme jokes) spirochetes. But that didn't really feel like it went very deep - it was too literal, so I think this collage better represents how I 'nourish' myself right now.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><b><span style="font-size: x-small;">'Nourished'</span><br /><span style="font-size: xx-small;">#herbaltea #organicchocolate #cactusgarden #breathe #ifyoucandreamityoucandoit #butterlies <br />#justwhenthecaterpillarthoughttheworldwasoveritbecameabutterfly<br />#somepursuehappinessotherscreateit #art #myart #arttherapy #flowers #candles</span></b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">There is tea (green tea, ginger tea, matcha tea, turmeric tea, kava tea, 'breathe deep' tea, 'throat coat' tea, 'bedtime' tea, milk thistle tea, fruity teas, fruity green teas, minty teas.... basically everything except 'real' tea - British and I dislike tea.... I've got the healthy ones though & I think that's what counts here!) - all with the obligatory hipster(hippy?)-but-I-love-it tea bag tags offering a dose of philosophical existentialism a few times a day, and some amazingly tasty coffee-chocolate from our local health food store.... no, my diet's not perfect, but I TRY!! </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">More representative of <b>how</b> I 'nourish' (/boost/ motivate/ pick a synonym) myself are all the little things I surround myself with. I like to look around me and feel the little boost I get from these things I've inadvertently collected or created over the years. I find this in quotes, art, plants (although I fear they might really be struggling for light now the clocks have gone back, unless they can get on board with my personal Lyme-time-zone), books, scented candles, special cards, my piano, (a million) notebooks, paints, pencils, pens, sketchbooks (different from notebooks), colouring books and a variety of my own creations. Lots of little things that make me smile, make me think, or remind me how much I enjoyed creating them. Some are clear messages - and perhaps the reason I've sworn at 'cheerful' inanimate objects on the odd occasion; some are things I have spent valuable time and energy (and spoons) creating myself - painting, drawing, planting.... Creativity is truly a form of escapism and is probably where I find mindfulness best. And even if some objects seem irrationally annoying on bad days, most of the time they serve their purpose and remind me to focus on the positive.</span><br />
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<span style="color: #0b5394; font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>Whatever we plant in our subconscious mind and nourish with repetition and emotion will one day become a reality.</i></b></span></div>
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<span style="color: #0b5394; font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>~ Earl Nightingale ~</i></b></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-83750319431497774012017-11-01T19:26:00.000-04:002017-11-03T07:32:24.824-04:00Mindful November<div style="border-width: 100%; direction: ltr;">
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I had this plan to
try to really focus on my blog this month. A project, a post a day - something
to aim for, however small it may seem. My health seems to be dominating
everything right now, and making it a thousand times more difficult to be even
the slightest bit productive… or organised, or tidy, or really 'functional' on
a daily basis. It feels like I am either
at some form of medical appointment, most often physical therapy; infusing my
medications or flushing my PICC line; or sleeping.<br />
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I thought taking photographs would be an easier way to set a realistic goal,
and then I came across this 'MindfulNovember' on instagram so adding a little
bit of guidance and ready-made inspiration seems like a good combo! Plus
actively employing some mindfulness everyday <span style="font-style: italic; font-weight: bold;">has </span> to be
beneficial.</span></div>
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<b cwidth="0" eza="cwidth:0px;;cheight:0px;;wcalc_source:child;wcalc:145px;wocalc:145px;hcalc:228px;rend_px_area:0;" style="background-size: auto; margin: 0px; max-width: 750px; padding: 0px;"><span style="font-family: Times, Times New Roman, serif; font-size: x-large;"><i>"Mindfulness is to keep our consciousness alive to present reality" </i></span></b></div>
<div class="author" cwidth="659" eza="cwidth:659px;;cheight:24px;;wcalc_source:child;wcalc:32px;wocalc:32px;hcalc:72px;rend_px_area:15816;" style="background-size: auto; line-height: 24.6875px; margin-bottom: 20px; max-width: 750px; padding: 0px; text-align: center;">
<i cwidth="0" eza="cwidth:0px;;cheight:0px;;wcalc_source:child;wcalc:32px;wocalc:32px;hcalc:72px;rend_px_area:0;" style="background-size: auto; margin: 0px; max-width: 750px; padding: 0px;"><span style="font-family: Times, Times New Roman, serif; font-size: large;"><b>~ Thich Nhat Hanh ~</b></span></i></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-12057609651449964472017-10-31T18:30:00.000-04:002017-11-03T02:51:20.601-04:00Hallowe'en<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Not a great time of the year for Lyme.</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> Well, not that there's a </span><b style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><i>good</i></b><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> time for Lyme, but.... Hallowe'en is an excellent reminder because it's really just supposed to be FUN. (This year I was Sleeping Beauty. Probably with less 'beauty' and more 'zombie' - although 16 hours sleep might add some points...) </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Also the no sugar* (healthy fuel, healthy body.... we only had a <i>little</i> left over 😋) and no alcohol (stops medication working), um, and <i style="font-weight: bold;">no energy </i>really take the fun out of it.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">... Can I just take a moment to point out I've not had a SINGLE cocktail since May? Not ONE drop of alcohol. Psychic mother even cut short my <b><i>mental</i></b> arithmetic in a restaurant as I was attempting to calculate the half life of this really really really <b><i>really </i></b>tempting cocktail and whether it would be out of my system by the time I infused my next dose of antibiotics. Imagine:</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Scene:</span></div>
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<b><span style="font-family: "georgia" , "times new roman" , serif;">'HARVEST'</span></b></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">Local & organic 'farm-to-table restaurant</span></i></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: xx-small;"><b>LONG ANTICIPATED FIRST VISIT </b></span></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: xx-small;">(Anti-nausea medications perfectly timed - I was HUNGRY!)</span></i><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><b style="font-style: italic;">ME</b><i>: [</i>silently thinking<i>] I could eat almost anything on this menu... so many veggie choices! Organic cheeses! Wild caught fish!** Grain bowls.... quinoa! Wild rice! This must be how a normal person feels when they could have practically ANYTHING from a menu*...</i></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i><b>How</b> do they choose?!</i></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i>[</i>turns page<i>] </i></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i>oohhhhh, those cocktails sound so good.... green tea with cucumber vodka & lime... I wonder how many units of alcohol in a martini glass here? I could have it tall.... I wonder if antioxidants in green tea cancel anything out? I wonder what the half-life of vodka is... [</i>reach for phone, unlock screen...<i>]</i></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><b style="font-style: italic;">PSYCHIC MOTHER</b><i>: [</i>barely glances up<i>] Don't bother calculating how long it will take to get a cocktail out your system.... you have blood tests in the morning, they'll still show alcohol.</i></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><b>ME</b><i>: I was just looking.... </i></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i> [</i>thinks<i>] Damn. Blood tests. Forgot about those. But wait..... HOW DID SHE KNOOOOW??!! </i></span></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: xx-small;">*Limited diet: general super healthy diet supports treatment; some treatment protocols follow specific diets</span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: xx-small;">**Yes, technically I'm 'pescatarian', but I think it sounds a tad pretentious. And super-extra hipster...</span></i></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><span style="font-size: large;">Now THAT'S spooky!</span></b></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>PSYCHIC MOTHER <br />My Dad used to joke to my Mum, "If your mother was a witch...." & trail off</b></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Not sure if he got scare</b></span><b style="font-family: Arial, Helvetica, sans-serif;">d 😉 or realized he was saying it about me too...😜</b><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br />But this photo is just too good....!!</b></span></span><br />
<span style="font-size: xx-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>(Don't have to be psychic to guess she's not going to love it as much as I do.)</b></span></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Back to today.... there's dressing up in elaborate costumes (yourself, house, child, dog... whatever)/ the excuse to dress up or wear crazy make up if you like doing so, but need the excuse! And the million different Pinterest ideas you just <b><i>HAVE</i></b> to try <i>one</i> day (mostly baking - with more sugar). N</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">one of those is especially 'Lyme-friendly' (it's that '</span><i style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><b>I need energy</b></i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">' thing). I didn't even get pumpkin carving this year... putting a hacksaw & 'the sharpest knife I can find' in either hand didn't seem like the best idea... A little decorating, joint effort:</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>The American 'Happy Halloween'<br />does puzzle me...</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I did binge watch Stranger Things 2, at the weekend, of course,</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> (<b style="font-style: italic;">it's SO </b></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b style="font-style: italic;">good!) </b>because my weekends <b>are</b> for resting right now: "<i>resting enables healing"</i>- not something I usually embrace, but thank you Netflix! But (no spoilers) while </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">attempting a couple of 'very simple' Pinterest Halloween projects </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">in the garage;</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> there was scratching in the roof space above my head, and the first image that popped into my head was a demogorgon. I mean, not consciously, a good story just stays with you, right?! </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>At least I still have 2 arms ;-)</b></span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGcQpnecMw9ctU83CfsFEr8017sPXY6q7wxWdpNmb58rucYgm9Yf1I5ThBgkurwAORCiR9WP3iyyGoBiPHVG2jW47sj9W6sqQMhqH_NtoEiGgwGz6A6_EgFwkMJ7iRsb7kUb4aycbX9i0/s1600/20171030_201525-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1279" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGcQpnecMw9ctU83CfsFEr8017sPXY6q7wxWdpNmb58rucYgm9Yf1I5ThBgkurwAORCiR9WP3iyyGoBiPHVG2jW47sj9W6sqQMhqH_NtoEiGgwGz6A6_EgFwkMJ7iRsb7kUb4aycbX9i0/s400/20171030_201525-1.jpg" width="318" /></a></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have to admit, anything I manage to do successfully with my arm (arms.... PICC line has been a bit uncomfortable too, I've had to be extra careful with it) feels like an accomplishment - even wrapping some toilet roll around a football & a mannequin or sticking some sticks through a flower pot & some bin bags! And some creative results... in the dark!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Quite honestly, these were b</span></b><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">ecause I was determined not to fall asleep after physio, as napping</span></b><br />
<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"> seems </span></b><b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">t</span></b><b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">o be </span></b><b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">messing up my sleep. I thought (hoped!)</span></b><b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"> I'd sleep at a 'normal' time if I made myself</span></b><br />
<b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"> stay awake - </span></b><b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">of course, </span></b><b style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">I never learn... didn't work!</span></b><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"> But m</span></b><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">y Pinterest 'shadow witches' didn't look too bad! (In the dark.)</span></b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On my hunt for Halloween quotes - specifically Shakespeare's witches from Macbeth, I decided I like this one from Tim Burton instead. It feels like it could have many applications and feels more fitting with my blog. I definitely feel like I dress up some (most?!) days - my true self is still in bed, sleeping. Sometimes, especially this year, it feels like my brain stays with it!</span><br />
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<span style="font-family: "times" , "times new roman" , serif; font-size: x-large;"><b><i>isn't it? For some of us..."</i></b></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>~ Tim Burton ~</i></b></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-88002123355994458392017-10-20T04:37:00.000-04:002017-10-20T04:37:16.542-04:00It's October!<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Really, October! I guess most people are well aware of that fact, since it's a very common and normal thing to know...plus shops are full of Halloween 'decor' and pumpkins, for those of us who do need a reminder since I seem to have 3 day weeks (physical therapy) & 4 days sleeping... or close enough! Time seems to just fly past, in one way. Some days do seem reeeeallly long. </span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So it's probably <i style="font-weight: bold;">not</i></span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> necessary to remind anyone else, but... my blog, my title, my reminder.... my exclamation mark! My: <i><b> 'I can't believe I last posted in AUGUST!'</b></i></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I really thought I would at least manage a blog post a week... then a month.... then, well I guess I slept a lot! (It's healing!) I have had various ideas - mainly: I should blog with photos, it's easier. So I do have collections of photos from various things we've tried, along with a few stories and I'm aiming to 'catch up' to the end of October... by the end of October 😀.... mainly by organising and posting the assortment of photographs I've been planning to use. Hopefully afterwards, I will actually manage to take advantage of my good days and engage a bit more !(Although good days are somewhat fewer right now, but I'm hopeful that means we are getting to the deepest parts of spirochaetal infection and pulverising the little Lyme-hell inducing buggers!). </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, an overview of the past 3 months...</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">When I arrived here in May, we began 'deconstructing' my body and its somewhat obstinate, definitely obscure, health issues again. We made a plan<i> (by that I mean I had about a dozen medical appointments) </i>and we moved forward ... then we adapted, made a new plan and pushed on with that.... I blogged a few times about what we were doing and... now it's <b><i>October!!</i></b></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We kept going... made a plan, pushed on....then we stepped back, puzzled over some stuff, made a new plan and pushed on with that... then.... we remembered why the word <b>plan</b> has never really been the best word dealing with my body and its rollercoaster recovery. We 'decided' (like it was a choice) to go with my gut - which has been pretty damn good in this whole saga; it's so important to remember to <b><i>listen to your body </i></b>and trust your instincts when it's <i>your</i> body that <i>you</i> can feel.... screaming at you!</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So right now, and for the past several weeks, physical therapy has been purely working with '<i>how I feel today</i>'. There is no doubt that the ongoing IV Lyme treatment has systemic effects - it's going directly into my blood to target infection at the deepest possible level, and spirochetes can affect the entire body, especially when left to run (spiral/ drill) riot, unchecked throughout the entire body AGAIN - of <b>course</b> it's affecting everything! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">But my PT can "<i><b>feel a difference</b></i>" in <b><i>all</i></b> my muscles (good side included) on weeks that the Lyme treatment affects me more (it goes in cycles). That wasn't really something I had thought about, but it's a <b>HUGE</b> validation of something usually only I can feel - most importantly, it means it's working (torturously!).</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So, I have continued to infuse Lyme medication every day, as part of my protocol (I have oral meds and some herbs & supplements too); I have continued to go to PT three times a week - sometimes I make it into the gym-area, mainly for some lower body strength training; other times I hardly move from the treatment bed while knots and spasms are worked out of my muscles; and dislocated ribs and twisted bones are eased back into place. (Yeah, that's fun.)</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And so I continue on this path for now - things are so much better than at the beginning of the year - unbelievably so! - but they still have a long way to go. We have positive and encouraging signs that things are working. And I have complete trust in my 'team' of medical professionals here, who offer such fantastic support - even after all this time.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The photos are more interesting, I promise. And coming soon....!</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com1tag:blogger.com,1999:blog-1139283891068820968.post-10987251129779625872017-08-04T02:02:00.000-04:002017-10-20T03:24:42.404-04:00Simple things...<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This year I started off talking about honesty. I had nose-dived into the deep, dark rabbit hole of a Lyme disease relapse. I want to paint a genuine picture of what that really means - recently, a few articles followed celebrities announcing they had Lyme disease and called it a "fad disease" (or similar). <b>It is not</b>. I haven't written as much as I would have liked, to date, but hopefully each post, shared with honesty and a little trepidation, dispels that idea, <i style="font-weight: bold;">way </i>before it enters any cultural psyche. <b>Nobody</b> with Lyme borreliosis would wish this disease on their worst enemy, let alone view it as 'fashionable'.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I started feeling the too-familiar, overwhelming, systemic fatigue; intolerable levels of pain, in my shoulder and throughout my body; a lot of 'brain fog'; and an increasing inability to do very much at all. Simple necessities - like a shower - left me completely floored. It felt like I'd erased years of hard work and treatment.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Since I came back to the US and restarted specialist treatment - Lyme and shoulder PT - I have felt overall more optimistic. I have wonderful physical therapists and we have finally started to see tiny steps of improvement (even more importantly, they say<b><i> 'we'</i></b> & use words like <b><i>'team'</i></b> - & they actually <i><b>talk</b></i> to each other.... how sad that is so remarkable). </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have a one-of-a-kind Lyme doctor, also a 'primary care' doctor (like a GP, but who 100% lives up to the better label!) who genuinely cares for me, covering every aspect of my health - and essentially, is really making inroads with tackling my Lyme relapse.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But, as I've said before - it's hard. Managing a PICC line (peripherally inserted central catheter - it goes into my arm and sits inside veins, eventually resting close to my heart so my medication gets 'right in there') requires careful care.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLGjLoDuTo_5_sIncbLIAqXh3-rJSLeqawQ4UswrvXWyoZnOW-HBVQMF6pzHRuUt_DBLRwHmiCqFpW4PEyl-hLWP1MPtfz2LpV5eUG7MAfm0RvlgCsh0GgOxCXKVXtMm5hBJsKydZSwAk/s1600/Screenshot_2017-06-06-09-08-02-2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1147" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLGjLoDuTo_5_sIncbLIAqXh3-rJSLeqawQ4UswrvXWyoZnOW-HBVQMF6pzHRuUt_DBLRwHmiCqFpW4PEyl-hLWP1MPtfz2LpV5eUG7MAfm0RvlgCsh0GgOxCXKVXtMm5hBJsKydZSwAk/s320/Screenshot_2017-06-06-09-08-02-2.png" width="301" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>From Wikipedia</b></span> </td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> I have 2 'tubes' coming from my line and they need to be flushed with saline and heparin twice a day; plus I have to infuse with my IV medication every night, and keep on top of oral meds as well. Obviously it's critically important to keep it clean, dry and carefully wrapped.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSVpb-IJCfV5doMBppL6tuRs58CHsbq64E0pApWWaoViZoEMIzTgoUpZhE_3sM7prOrc6G-F2cMcK2tI41iprdWOYmPuOS31ou54-HVXBd5dQEex3kkeBIENvwNUCbG78YrxOphluMdRE/s1600/20170724_112221.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSVpb-IJCfV5doMBppL6tuRs58CHsbq64E0pApWWaoViZoEMIzTgoUpZhE_3sM7prOrc6G-F2cMcK2tI41iprdWOYmPuOS31ou54-HVXBd5dQEex3kkeBIENvwNUCbG78YrxOphluMdRE/s400/20170724_112221.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>My nurse took this for me during a dressing change.<br />Ordinarily, it's always covered!</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Lyme treatment is pretty brutal - as I've mentioned elsewhere, and in the 'Lyme pages' on here. Details for another post. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;"><b>Invisible illness?</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On top of that, I have physiotherapy three times a week - we have to be careful with the PICC, which is in my 'good' arm; and focus on my right (injured) side. We're still working on connecting my brain with the muscles around my scapula and getting them to work. Since I came back, the positive results have really helped me push forward. Waiting 5 years for some positive results is a </span><i style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif; font-weight: bold;">really long time! </i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So those positive baby steps have felt like giant leaps.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>On a good day:<br />Gravity... stretching lats while supporting body;<br /> this pops my ribs back into place too;<br /> aim is hand on the floor -'above my head'. <br />Physio's aim is:<br /> 1) to hold me up & not let me push it too much<br />2) to NEVER let me attempt to backwalkover out of this<br />because the good hand does touch the floor now<br />Me: "<i>I'm sure gravity will just carry me over..."</i><br /> Him: <i>"NOPE" *sits me back up*</i></b></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b><i>(For perspective: </i></b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b><i>Once, this was barely a stretch for me;</i></b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But this past week, I plateaued. Right from the <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">beginning, they told me this would be the normal pattern.... except it wasn't. I didn't plateau so much as fall right back off the cliff and start climbing from the bottom again. So many unknown issues were discovered following that first surgery.</span> </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, really, this is good. It's <b>FANTASTIC!</b> Finally, I am doing what they expected.... I improved a little, and I've stayed there - no tumbling back down the cliff.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>BUT</b> - no baby steps this week AND it's been a horrible Lyme week, with lots of herxing and general <i>'I want to crawl under the covers and come out when it's over'</i> days. It turns out that's not a good combo, apparently...</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I think 'meltdown' was the word my Dad used... </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i><b>Thanks Dad</b></i>.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> Most of the time (like 99%)</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> my Mum is my chauffeur, coffee buddy, shopping buddy, pedicure buddy; my chef, nurse, pharmacist.... all round carer & companion. (When she gets old, I feel like the routine is already established, we'll just switch roles. Although hopefully there is</span><b style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> A LOT </b><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">of living for us both before that happens!!<i> *EDIT: she read this & didn't know whether to laugh or cry....!</i>)</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But today she had a migraine, and my Dad was home in the afternoon... (he's delighted about that, I bet). I had no appointments today; I had a 'to do' list - not a general 'I hope to do this soon' list, an actual 'wash my hair' - because I'm not even going to write how long it's been since I did that - and tidy up <b style="font-style: italic;">just a little </b>and some other very necessary *simple things*. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Not that simple. I struck out at number 1 (and so the 'meltdown' (this is not my word!) took over. The <i>'I can't do anything; I hate that 'do nothing' is an actual 'to do' thing because it has to be.... I can't do aaaaaaaanythiiiing......' </i>kind of .... um, ok, meltdown, I suppose. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Ultimately, with the male need to <b>*do something* </b>my dad said he would wash my hair (my skin is sensitive to the adhesives - this sensitive skin is another fantastic new side effect of the new Lyme meds *urgh* - so I have a healing sore just under the PICC line and I can't stick the adhesive plaster over it. The insertion site us covered, and it's bandaged instead right now; but - while the full adhesive dressing isn't waterproof, it's not fabric - right now I'm reluctant to sit in a bath and get condensation on my skin/ the fabric dressing etc.). </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> When I was severely ill, before I even knew about Lyme disease, I used to get my hair washed over the kithen sink, lying on the worktop...</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">... in a different kitchen. I made it downstairs to see my dad setting up his 'station':</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">Creative home hairdressing :)</span></b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A gym/ thick yoga mat over the hob, so I could lie on it, and also because I'd wailed something about the hard surface and a sore shoulder blade - it was to make the worktop "softer". So it turns out even the simple things can make you smile on a really, really, rubbish day. And more amazingly, my dad actually embraced some creative thinking (that was <b><i>NOT</i></b> football related).</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And while he played hairdresser, 'supermum' had woken up and was ticking off the 'tidy up' part for me. So, with clean, wet hair, and puffy eyes, I collapsed back into bed, in a tidier room, where I'd quite honestly like to say I'm resolving not to move for a day or two - until this is over - but I've got physio tomorrow afternoon.... yay!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">😞</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I'm not sure who this quote is attributed to, but I'm attributing it to my mum here, because she says it constantly:</span><br />
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<span style="color: #073763; font-family: "times" , "times new roman" , serif; font-size: x-large;"><b><i>"This too, shall pass"</i></b></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">*EDIT Physio was kind of tough... then I got a migraine from hell. In between, I was up, out, dressed, and so (always good to take advantage of that!) Mum & I had coffee & went for pedicures - it's always nice to do something 'normal'! However, as I collapsed into bed, and she later helped me with my infusion, she said, "<b><i>This too, shall pass".</i></b>... <i>have you been reading my blog?<b> "Recently? A new post? No..."</b></i></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>Too funny.</i></span></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-10026698899357950092017-07-12T02:00:00.000-04:002017-07-12T06:44:48.331-04:00June: Plans, PICC lines, & physiotherapy<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I did say May was spent forming plans. I really intended to write in more details, but my brain had other ideas - mainly <i style="font-weight: bold;">SLEEP</i>. May was pretty exhausting - filled with medical appointments; balanced by record-breaking snoozing. Time flies though - especially when you're unconscious 50% of the time!</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br />June saw those plans being put into place, so here is an overview. Of course, I have more details, but I'm trying not to post a novel here, so details to follow.... I can definitely say that, despite the hellish processes, things are overall more positive than they have felt for a long time. There is still a long way to go to reach that light at the end of the tunnel, but it's been turned back on again. I have a supportive medical team around me - <i style="font-weight: bold;">PLANS(!) </i>- and I feel there is hope again. And that is probably the best thing I could hope to say and feel right now.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><b>pinterest.com/gmun22</b></span></td></tr>
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<br /><b style="font-family: "helvetica neue", arial, helvetica, sans-serif; text-align: center;">1. Physiotherapy</b><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />This is the easy one, so I'll start here. In short, I still need a LOT of one-to-one, careful, 'active-assisted motion' physiotherapy (or 'physical therapy' - since I'm back in the land of American English).</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Since I arrived in the US, I've seen my specialist scapular PT; my nerve-ortho's physician's assistant (he mainly sees patients for procedures / pre-surgical appointments; his PA is fab); and seeing my regular physio a few times a week, I would say physio is going well.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> 'Well' being relative to my entire injury; 'well' is nowhere close to 'functional' yet. 'Well' is tolerating careful, gentle exercises, focusing still on increasing neuromuscular pathways and increasing movement and strength without increasing pain. It's a fine line. It's an incredibly difficult balance to find, but all things considered, 6 years on from my fall, I can finally say progress appears to be taking some (very tiny) steps in the right direction.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDz1WanFrqnHPOyrx04ozmKzeJzcOlJUxXBmbhaMjz4yLBTgR4zB3lB4LFshp3xv3-L7GZ6Df7Ryqyc8_u7HqeIf9SnzKtcfUi41ial4epSZBhviIBcKj21jmKow7RZspEEAI36M5JnaU/s1600/2017-06-06_00.37.58.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDz1WanFrqnHPOyrx04ozmKzeJzcOlJUxXBmbhaMjz4yLBTgR4zB3lB4LFshp3xv3-L7GZ6Df7Ryqyc8_u7HqeIf9SnzKtcfUi41ial4epSZBhviIBcKj21jmKow7RZspEEAI36M5JnaU/s320/2017-06-06_00.37.58.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">PT motivation required!<br />#goodvibetribe<br />#IdontsweatIsparkle<br />#thisismytootiredtofunctionshirt <br />(some honest days!)<br />#makeithappen<br />#noexcuses<br />#mascara&coffee<br />(mainly because they didn't have 'cap & sunglasses'!)<br /><i>I think they help!</i><br /></span></b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><br />2. <span style="color: lime; font-size: large;">Lyme</span> relapse: PICC line & IV antibiotics </b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It was a unanimous decision (Dr, me, & my mum - all prior to any discussion) to address my Lyme symptoms as aggressively as possible, with IV antibiotics for the first time. My symptoms have drastically increased and I have majorly relapsed - I would say I feel as bad as when I first started Lyme treatment. IV is the way to hit the infection the hardest - in combo with some other meds.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My response to the first week of treatment 100% confirmed it's been the right decision. There is also a possibility a resurgence of infection may be a contributing factor to my shoulder/ upper body pain (borrelia bacteria like scar tissue.... I have a whole load of that). This also means certain other therapies - in particular, aquatherapy, for my shoulder, have to wait since the PICC line has to be protected (kept clean, dry, no massive weight-lifting etc.... ha ha) to avoid any risk of infection. Some things are just impossible to do at the same time.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It makes more sense to focus on healing my entire body, and hopefully reduce some pain levels/ pain in specific areas first. This means - in the<b> PLAN</b> - I *should* potentially remove a huge stress on my body, and be able to battle 'just' the shoulder issues instead of my body fighting battles on too many fronts. If it does reduce pain that will be a major bonus.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I continue to see my (awesome) physio three times a week and we work on making my muscles work individually, and gently strengthening them - that's way more intensive than it sounds! </span><span style="font-family: "helvetica neue", arial, helvetica, sans-serif;">So while I can continue very specific shoulder work, the two things are inextricably linked. </span><span style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> I'm trying to keep things as balanced as I can - physio is essential, but recovering from this Lyme relapse will hopefully make everything easier (used relatively!).</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I won't lie, this is hard. On physio days, I wake up and so many times I have thought '<i style="font-weight: bold;">I can't go today.... I could cancel...</i>' - but I grab one of those damn T-shirts and I go. And I survive, even if I do often fall asleep afterwards...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0pCiysJfr9e9WArtzSoBPbadh-LriRTrHge7FgXWuzdfKjvr730x_UnmsQfeWBM734B4Qqjn3kBaFbG6sl6mnDW1-30s38Zi7qJB5EkD1vgnDUyU7UROCCCMkIuiASjgFjMsi3j1NFMc/s1600/Screenshot_2017-05-31-07-33-39-2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="608" data-original-width="442" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0pCiysJfr9e9WArtzSoBPbadh-LriRTrHge7FgXWuzdfKjvr730x_UnmsQfeWBM734B4Qqjn3kBaFbG6sl6mnDW1-30s38Zi7qJB5EkD1vgnDUyU7UROCCCMkIuiASjgFjMsi3j1NFMc/s400/Screenshot_2017-05-31-07-33-39-2.png" width="290" /></a></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And.... to the<b> PICC line</b>. I think, right now this is easier to summarise in these photos:</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge3hICAcs5FV0xbf_RlvzG6uOORDx5M8fbgBvgHrb2-7vQjtkuxQUx8VCJCixBXnkEUX5eXcvYJ_vfCknXxOhvRIOq8d1uQ1kFC5_iRgQ8G_bUQ09bNDgMpTOdqTFAbfyVwOco8RP3fS8/s1600/Screenshot_2017-06-06-09-08-02-2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1147" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge3hICAcs5FV0xbf_RlvzG6uOORDx5M8fbgBvgHrb2-7vQjtkuxQUx8VCJCixBXnkEUX5eXcvYJ_vfCknXxOhvRIOq8d1uQ1kFC5_iRgQ8G_bUQ09bNDgMpTOdqTFAbfyVwOco8RP3fS8/s400/Screenshot_2017-06-06-09-08-02-2.png" width="376" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><b><span style="font-family: "times" , "times new roman" , serif; font-size: xx-small;">PICC line explanation<br /> from Wikipedia</span> </b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />My first week with my PICC is below, in a photo collage - going with 'the picture is worth a thousand words' thing. And, yes, my bruises are absolutely worth documenting because I don't actually bruise that easily & having the line placed was not fun! The doctor told me my veins were "uncooperative" and apparently I have "small veins". I did however take more offence at being told my muscle was small..... of course I just couldn't stop myself -<i> "I used to be strong.... I was an acrobat... I used to lift PEOPLE!"</i> Priorities.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">When a doctor apologises several times during a procedure, and again afterwards, explaining it "shouldn't have taken that long" - and his PAs/nurses begin to feel like they're becoming cheerleaders, repeating, <b><i>"you're doing SO well... SO well..."</i></b> I really don't think it has the desired effect! Honestly, it wasn't really that bad (once it was over!), it just definitely was 'more' than I expected. But - it's in, the port is sewn to my skin (black stitches through the holes on the purple bit); and this should mean it's there to stay for as long as I need it. Fingers crossed!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have way more to say about that, but I think this works for an overview:</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW36ng86VRwaD8L6TMMyogynLiN1Tk4QIuFcWToqy3MNXAXpBQN1MUinLCVF6p9_vmm_OqwRi6RWE0NxawCtKJqSKez8kfTecnK7l9ojylv7GPREGnGNOJ4EImAlNF-hSdg4e8Vt4Dh74/s1600/2017-06-19_00.36.49.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW36ng86VRwaD8L6TMMyogynLiN1Tk4QIuFcWToqy3MNXAXpBQN1MUinLCVF6p9_vmm_OqwRi6RWE0NxawCtKJqSKez8kfTecnK7l9ojylv7GPREGnGNOJ4EImAlNF-hSdg4e8Vt4Dh74/s400/2017-06-19_00.36.49.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>PICC line: week one<br />(There is a clear plaster over the insertion area so it can be monitored.)</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />* I wrote most of this a few weeks ago - it needed some editing, but it does pretty much sum up June. However, here's my most recent additional comments a few weeks into this treatment.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br />IV </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">antibiotic treatment (in combo with other stuff) is now heading into week 5. It really does require an entire post. </span><span style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> I'm just adding a little up-to-the-minute update because I am not exactly in super-efficient mode with all this! (Whatever the total opposite is - that's me, except with lists because apparently some part of my brain still thinks I might actually accomplish multiple things a day if I write them down. </span><span style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> I consider it living in hope....! However, I have come to terms with the fact that the lists are more 'hope-to' lists than regular 'to-do' lists. Mostly.)</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />Briefly, after a few more weeks, I still feel strongly that the IV antibiotics have been the best decision / option for right now. This is confirmed by the fact that my symptoms have been exacerbated in (horrid) ways I absolutely did not anticipate and I am well and truly floored by this treatment. It is hard..... It is harder than anything I have ever done before (re. Lyme treatments) - and I really thought I had 'been there, done that & (literally) got the Lyme T-shirt'. Ultimately, this hopefully means I am attacking things in a far deeper way than I ever have before. So, it continues. It is a strange relief to realise many seemingly disparate things fit together; but it is too overwhelming to look at the big picture right now. I am very much surviving one day at a time - and hopefully each day that means I am taking a step closer to where I want to be.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />An old favourite seems perfectly fitting:</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: #073763; font-family: "times" , "times new roman" , serif;"><i><b><span style="font-size: large;">"That which does not kill you makes you stronger"</span><br /><span style="font-size: large;">~ Nietzsche ~</span></b></i></span></span><br />
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com3tag:blogger.com,1999:blog-1139283891068820968.post-22050749411628376372017-05-31T01:10:00.000-04:002017-06-06T08:51:40.922-04:00Lyme brain, 'pain scan'<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As the saying goes, <i><b>'a picture is worth a thousand words</b></i>' & this one didn't <i>just</i> make me think of that phrase; this picture felt like it jumped out of my screen: the perfect embodiment of the 'monster attacking my head'; its tangible horror captured in perfect detail. It was like staring at an image of my own, physical, pain.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">For 12 years and 5 months now, I have suffered from almost constant headaches, something very common in Lyme disease, probably one of the most ubiquitous symptoms (many symptoms vary, especially with chronic Lyme disease - it adds to the difficulty in diagnosis when doctors are not familiar with it, and the patient doesn't recall a tick bite) - headaches are - I think I can say - universally experienced, and despised. I have had good spells, where the headaches have dulled; but the worst, completely debilitating headaches come when I feel the little spirichaetal buggers have rebuilt their army, regrouped, devised a new strategy, and start waging an aggressive full-on attack on my body again. When my headaches are at their worst, I have long describe them in these very words:</span><br />
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<span style="color: #38761d; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><b><i>"It feels like giant hands are inside my skull, squeezing my brain, from the base of my skull, wrapping up and round."</i></b></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">So when I was scrolling through instagram this image, posted by a Lyme awareness group <span style="font-weight: bold;"><i>grabbed</i> </span>my attention:</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8h28GMWehlRmZSJpknU1dmD3L0-8Z0XUoyFacj7VRSFCf3BgmYm63fzfiaSJZT96qFT5ePsffRTj8DPl1j-TUt1R_xtjcT6GMxGc_XFBv7JGi2TY3QdL2PUC8PkKY8DdAmxKGWUDzmW0/s1600/20170531_025240.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1282" data-original-width="1074" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8h28GMWehlRmZSJpknU1dmD3L0-8Z0XUoyFacj7VRSFCf3BgmYm63fzfiaSJZT96qFT5ePsffRTj8DPl1j-TUt1R_xtjcT6GMxGc_XFBv7JGi2TY3QdL2PUC8PkKY8DdAmxKGWUDzmW0/s400/20170531_025240.png" width="335" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(<b style="font-family: Times, "Times New Roman", serif; font-size: x-small;">From 'inourshoesproject' instagram page)</b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">Maybe it seems silly to feel so... connected, horrified, surprised... stunned?... at one image. But looking at this says so many things to me:</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">- <b>That's <i>my</i> head!!</b></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">- I could have drawn that</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">- If you could photograph my pain, that captures every.single.detail.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">- ... <b>MY head!!!</b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">...</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">But overwhelmingly, it says:</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><b>SOMEONE UNDERSTANDS... like really <i>really</i> 'gets it'.</b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">I am incredibly sorry that someone does - and not just some<i>one </i></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">- I'm not sure where the image originated, it seems to have been shared on various Lyme sufferers' social media accounts. <b><i>If scans could show pain - that is a Lyme brain, in perfect detail.</i></b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"> It is very common with Lyme, as with other 'invisible illnesses' that friends and family struggle to understand how ill a person is - often people 'don't look sick' and others have difficulty matching appearance with 'behaviour' (/symptoms) - to simplify. </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"> We are taught to trust what we see, and we have difficulty when there is a disconnect there.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">Images like this one, I hope, help people to understand a bit more, by providing a visual depiction of pain. We know that we cannot see every illness, but we understand the severity of some 'invisible' illnesses. There are still illnesses - and Lyme disease is one of many - where genuine awareness is still required, and increasing understanding can help with support, and be a positive factor in many ways. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">'Invisible' can be hard for me (& others) too. Nobody wants to 'look ill'; but everyone - healthy or ill; on a life high point, or facing major challenges - wants to be understood.... and it can be difficult when people rely on what they see over what a friend or family member may try to describe.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">The best thing anyone can do for a friend - whatever they are dealing with - is just to try to accept that only they <b><i>feel</i></b> it, and the best thing you can offer is your support. In some cases, it is appreciated more than you'd ever imagine. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"> May has been Lyme disease awareness month and my blog has been rather neglected - with good reasons. Cutting a very long story short, for now, in May I travelled back to the US, for treatment for a pretty major Lyme relapse; and also for critical treatment for my shoulder - treatment I still can't get at home due to the complexity of the injury, the new surgery, the lack of specific 'scapular physiotherapist(s)' & also the absolute impossibility of finding someone who knows about Lyme AND crazy shoulder injuries - and just as impossible, finding a team!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">So April was spend getting stuff organised at home - hard right now, my health has really nosedived. May has been spent seeing all my doctors and therapists here, and making a plan. Right now, it just feels so damn good to HAVE a plan!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Hopefully I'm 'launching'!</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com2tag:blogger.com,1999:blog-1139283891068820968.post-75719294503911127592017-03-14T01:13:00.000-04:002017-04-09T01:15:33.389-04:00It is always possible to be kind...<span style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b>Invisible Illness: Be Kind!</b><br /><br />I'm finding just now, through various channels, something is constantly coming to my attention. Two words really: </span><b style="font-family: "helvetica neue", arial, helvetica, sans-serif;">INVISIBLE ILLNESS. </b><span style="font-family: "helvetica neue", arial, helvetica, sans-serif;">It's something that we seem to accept, as a concept; as a definition - but </span><b style="font-family: "helvetica neue", arial, helvetica, sans-serif;">WHY?</b><span style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> - why are we <b>'invisible'</b>? Because we're not really - we're everywhere.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Do you know someone with arthritis, or rheumatoid arthritis? With any kind of medical fatigue? With early stages of MS? With Fibromyalgia? ME? Someone elderly - perhaps not with a specific illness, but who has slowed a bit with age and is frustrated with their own slowness? Or with heart issues - heart failure; angina, post heart attack? ... There are many examples connected with the heart that slow people down.... <br /><br />It may be a chronic pain or injury - pain in a knee, ankle, hip - a necessary slow walk; or something acute, but not requiring crutches. Acute things tend to pass us by a lot - we are 'inconvenienced'; we temporarily may pass comment on how hard it is, to deal with; or how we <i>"can't imagine how people can live like this" </i> - I've heard those words, many times, from countless people. And, in that moment, people mean it; they have a glimpse into a world they do not usually inhabit. But only a passing visit - and as with most pain, our mind forgets it easily and quickly. The lesson seems to be fleeting too. By the time 'one' is in a hurry again, the acute injury, and all that came with it, is long forgotten.<br /><br />There are also many people struggling with all kinds of mental health issues, permanently, who may take 'too long' to decide on something seemingly simple; struggling, for whatever reason, to reach a decision - perhaps thinking fast is not an option for them; perhaps we cannot possibly begin to imagine how a brain different from our own works - but we don't really need to imagine, we just need to accept. It is very possible to encounter someone with an acute version of that, perhaps someone with a migraine; or someone who has had devastating news and is so overwhelmed with emotion, they cannot focus their mind on an inane decision such as what type of coffee to order; or something equally trivial.<br /><br />Then there are people undergoing all kinds of treatment - chemo is obviously one that jumps to mind, sometimes visible, sometimes not - and there are many others too....... treatments, and even the stress associated with them, that slow people down, make it hard to walk, to think, to pull a heavy door, to pack shopping away quickly; even to make a decision.<br /><br /><i> Obviously I am thinking about </i><b><span style="color: lime;">Lyme Disease </span></b><i>especially - but having my shoulder injury and the associated chronic pain has shown me even more of a world that quite honestly is <b>NOT </b>invisible. I think we have to move away from the idea of <b>INVISIBLE ILLNESS. </b>Opening our eyes, both physically and metaphorically, to the point of observation doesn't just teach us to look a bit deeper; it brings a kinder society - people giving the benefit of the doubt; people choosing to help instead of hurry. <b>Surely, in this world we find ourselves in just now, aiming to be kind may be the best thing to do?</b></i></span><br />
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<tr><td style="text-align: center;"><img alt="Agreed. So many people are disagreeing about faith, many ignore the gifts of the Spirit, and some misunderstand or refuse grace. Whatever denomination you are it's not about you it's about Jesus and what He did, let's never forget that kind of love.: " height="400" src="https://s-media-cache-ak0.pinimg.com/564x/5d/9e/21/5d9e21a67c044fb0b166546d06375947.jpg" style="margin-left: auto; margin-right: auto;" width="257" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: Arial, Helvetica, sans-serif;">From Pinterest</span></b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I personally am moving away from the idea of <i style="font-weight: bold;">'invisible illnesses'</i> - I don't think there is such a thing. I think there are (consciously) 'hidden' or ignored illnesses (I'm using 'illness'; thinking about Lyme - but my thoughts are applicable to an illness, a condition, a syndrome, anything really - to <b>PEOPLE</b>; not everything is, or has to be labelled). I think, at our worst, we hide away from the world anyway, almost instinctively - not necessarily through choice, but in the way anyone will 'hide' in bed with the 'flu - several days un-showered, with ratty hair and 'moulded to your body' PJs is not a look anyone really wants to share with the world*!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">*However, if you answer your door in PJs in the middle of the afternoon, there is a <i>'look'</i> - usually a quick flash that may in some cases be inquisitive, but most often says, undeniably: <i>it's 3pm, you have PYJAMAS on. </i>I have learned that throwing a blanket over your shoulders changes this entirely - my own little experiment. People apologise, they <i>"hope they didn't wake you/ get you out of bed/ etc." </i>- just a blanket draped over your shoulders. It's so simple, yet so telling. (Yes, I've still got my geek on...... nonverbal communication, it's always there!)<br /><br />But ultimately, I'm writing this because I'm beginning to truly hate the word <b>INVISIBLE ILLNESS. </b>It's not invisible. It's often hidden away, but it is also always out there, somewhere.<br /><i> </i><br />If you truly keep their eyes open - and sometimes your heart - <i><b>up the empathy!</b></i> You will see people all around us who may need that little bit more help, a few minutes more patience - people for whom that loud and exasperated *sigh* really says <i>"we can all see that you're slow; we can all see that you are holding everyone up; you're annoying people everywhere you go."</i><br />People may not <i style="font-weight: bold;">mean </i>to convey such hurtful messages in a sigh - they are perhaps running late, desperate for coffee, on their way to a meeting. Or in some cases, with a glare and a sigh, they may be first class arses who should pop their own bubble a bit, look outside their comfort zone, and realise <b>kindness never killed anyone!</b> </span><br />
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-75208280345124853492017-02-25T00:57:00.000-05:002017-03-08T05:07:09.673-05:00'An empty desk'<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Just something I was thinking about lately...</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif;">~ Einstein ~</span></b></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: Arial, Helvetica, sans-serif;">From Google Images</span></b></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>From Google Images</b></span></td></tr>
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<br />out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com1tag:blogger.com,1999:blog-1139283891068820968.post-22572160340089648112017-02-22T23:35:00.000-05:002017-03-08T04:21:56.890-05:00#TBT Happy Memories<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A happy memory, something nice to write about. Something that brought genuine smiles to my face the other day. So I figured that definitely deserved a blog post. 😀</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have a lot going on again, health-wise - with my utterly f*kced -up shoulder; a worsening Lyme relapse; add a pinch of stress, a shake of trauma; mix together in the year from hell (not exaggerating) and simmer indefinitely at boiling point, and I feel that adequately describes my life right now - as briefly as possible. That's all for another day. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I'm painting a picture of just <b>how delighted</b> I was to have something truly make me smile. It's a stark contrast right now, and it was an important reminder that remembering the good stuff is truly important.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I do feel like I'm battling through each day, rarely emerging on top, and the longer that goes on, the more difficult it becomes to find positives. Honestly, it's beyond frustrating - there is nothing I wouldn't do or try, right now, to make things better... and I have; I have tried everything you can imagine, and more. And worse than frustrating, is the soul-crushing feeling of admitting (even to myself) this 'new thing'/ 'new person' / 'new whatever' - that initially held such optimistic promise and gave me a glimmer of hope, is not 'The Thing' I am looking for. It's like treading water - kicking so hard all the time, but never actually getting anywhere. Right now, the challenge is to keep kicking; to keep my chin above water long enough to survive. And</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> hopefully I can take control again soon and get back to seeing my wonderful doctors & physios in the US, who helped me make great progress before - I am sure I can work hard and make it happen again - and most importantly, <b><i>get on with my life</i></b>.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But, appreciating the small things just now; I woke up a few days ago and my ex-gymnastics partner had posted a #tbt on social media that really made me smile....</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif;">Colette on base, me in the middle, Amy (always!) on top</span></b><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">Colette kicked it off by writing: #tbt to holding two humans up with my own two legs....</span></b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, of course, i dug out out one of my own photos to post too.... and captioned it '<i>to when I could hold up two humans too... </i><b style="font-style: italic;">on my shoulders' - </b>which probably won't be happening again. Definitely not any time soon. Although one day..... who knows?! </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Me on base, Colette in the middle & Amy on top.</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's a long time since I really <b><i>really</i></b> looked at those photos and took the time to think about what we did; how much I loved it. Comments on social media reminded me how funny I always found it when non-gymnasts learned what I did. It was just something I grew up with - it was normal, in my world. I remember once, in training, the balance in the second photo came tumbling down and the full weight of a 10 year old landed on my head (think: approximately 1.5 times the weight of a checked bag for an international flight)... while I was in splits. There was the usual call to my parents - <i>I'm ok, but please pick me up from A&E instead of the gym tonight </i>- a soft neck collar from my physio for some damaged muscles/ tendons/bruised bones; and probably a couple of days off uni. None of that was a huge deal - you really couldn't learn new things without the odd fall. But the thing I remember most about that was going into uni with a neck collar on ('normal' people react to those things way more than gymnasts - lesson 1); someone asked what happened, so I very briefly explained. The girl who asked stared back at me... <i style="font-weight: bold;">"You can do the splits?!" </i>she replied, sort of incredulously. I remember staring back, feeling like I'd been dropped in an alternate universe. At the time, we were the only trio in Britain competing that base position with no hands (- my hands are not on the floor); all I could think was <i>I can do the splits..... <b>that's</b> what you got from that?!... practically everyone I know can do the splits. .. </i>But, of course I sort of smiled and nodded, and had umpteen similar conversations through that first year of university!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Growing up, friends knew me as a gymnast, it was so much a part of my identity. When I started uni, and conversations like that happened; I had to realise my little world was a little different sometimes. ( But doing the splits in a bar always ended with free drinks! 👍🍸😆)</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> So I guess it was nice to slip into that world again, through those photos. It's so easy just to close my eyes and imagine I'm still there. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> My old gym partner and I had a conversation about it, reflecting on that time and thinking about how in sync we were ALL the time - how we all took it for granted, but it really is quite incredible when you really think about it.... and there was always such a natural feeling to it - we didn't have to work hard at being in sync (we had to work damn hard at everything else!!); we were just in tune with each other. I think with all those years to reflect, it is a pretty amazing thing! (But really, being able to do the splits STILL impresses people more! 😂.... trying to maintain my core strength & leg strength is important... therefore exercise = stretching. I could do splits with a sling* on my arm! *Not the crazy, giant post-surgical one.... I could hardly move anything at that point - couldn't even put on socks! However, arm supported & I can (sort of*) still do the splits now! 👍💪*'sort of' - as in: if you're a gymnast, my hips are twisted, my back knee is twisted and I'm really not sitting up straight, or comfortably; if you're not a gymnast, I can totally still do the splits! 😉 ) </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We trained together ALL the time, but we just loved it. We both talked about how much looking at the old photos really made us smile. They are absolutely fantastic memories to have - and to share.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> We worked together so many hours every week, completely trusting each other - really with our lives (the risk of serious injury is high!! See the photos?! ⬆ - and, like I said, they did come tumbling down occasionally! Everyone's did!!), but in among all that, I don't have a single memory of fighting, or falling out - we just loved what we did.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Given my blog is generally medical, and this x-ray might be the coolest thing ever, this seems a good place for it! (From Pinterest)</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Most of this blog documents my 'journey' '<b><i>out of the Lyme light'</i> </b> - (and in, out, in, out, slip downstairs, have surgeries, somersault in my car... turn it all about....) that wasn't exactly my intention - obviously! - my intention was to spread awareness of Lyme in the UK (again, uodates there require a whole load of other posts....); but it unintentionally became my personal blog as well as an awareness blog - about way more than Lyme Disease. It is very much about what's going on in my life right now... and I can't wait until I have something more exciting and interesting (in a <b>GOOD</b> way!) to write about. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But for right now, in this moment, it's nice to have something else to think about and write about; and to remember what was genuinely one of the happiest moments in my life - I loved competing. We loved competing. I do feel lucky that I can look back on these photos and conjure up so many happy memories - they spark so many gymnastics-related memories, and they all make me smile. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Not 25 years yet (!) But I'm sure we'll still feel the same in that far, far distant future :-)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq4TX8WCe8NozZgdHDL156sTk3WH7wdgSeJLpCA0YU8GVc2shyphenhyphenV30p3npxNHMMczzvgUGctpWKw8Eb1QnBosRqDOFfUeWqyCTrycS0tNmlow7FKyJvuhzmi7n6kQsGRImm9UJbXsQsntw/s1600/Screenshot_2017-02-28-06-49-40-1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="296" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq4TX8WCe8NozZgdHDL156sTk3WH7wdgSeJLpCA0YU8GVc2shyphenhyphenV30p3npxNHMMczzvgUGctpWKw8Eb1QnBosRqDOFfUeWqyCTrycS0tNmlow7FKyJvuhzmi7n6kQsGRImm9UJbXsQsntw/s400/Screenshot_2017-02-28-06-49-40-1.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And it DEFINITELY came into play, I guess...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Along with this - yes, gymnastics 100% taught me ALL of these things; it's also a good reminder that these are most definitely transferable skills.<br />
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And when my dad complains I am being stubborn (I get it from both sides, it really shouldn't surprise him), I tell him that's how I've <b>SURVIVED</b>!!</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And honestly, now I really don't know if I'll ever be able to handstand again or not... I'm pretty sure I won't ever stop hoping & then hopefully trying - at some point, because being upside down always feels best! However, I definitely want one of these tops... because: <b><i>once a gymnast, always a gymnast!</i></b></span><br />
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-21466211874796528222017-02-05T23:00:00.000-05:002017-02-28T14:48:55.896-05:00Pain relief arsenal...<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So far, I feel this year can be summed up by the fact that this photo is pretty much my current "what would you take to a desert island?" answer. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-size: small;">Pain relief arsenal.</span> <br /><span style="font-size: x-small;">It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...</span><br /><span style="font-size: x-small;">#accessorize</span><br /><span style="font-size: x-small;">#thespikythingshurtlikehell</span><br /><span style="font-size: x-small;">#theyarenotsquishy</span><br /><span style="font-size: x-small;">#theydofixdislocatedribsthough</span><br /><span style="font-size: x-small;">#YAY</span></b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I had a few violent 'pain attacks' lately and - sticking with my personal resolution to be more honest - I really feel pain is winning right now. So, here are the weapons in my pain arsenal - most of them go everywhere I go right now. Find your pain, pick your poison. I present....</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><b>My Pain Arsenal:</b></span><br />
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<li><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b style="font-style: italic;">Tablet organiser case</b><i> (guess I'm missing the hot pink version!) with a mini 8-compartment tub in it for sorting daily pain meds (no Lyme meds or supplements - this is just the pain box</i><b style="font-style: italic;"> :-/</b><i> ). Right now I have 40-50 tablets I take every day in that - types of painkillers; multiple muscle relaxants & anti-spasmodic meds; a couple of different anti-nauseas (I respond to severe pain with nausea..... sometimes I throw up. And that </i><b style="font-style: italic;">hurts like hell</b><i>. So I have some serious anti-emetics in there); plus some 'extra-just-in-case' tablets for when </i><b style="font-style: italic;"><span style="font-size: large;">Really Bad Things</span></b><i> happen (I'll write a 'Really Bad Things' post... maybe a few... little snapshots of my whole '<b>honesty and pain'</b> thing.... that will be something happy and cheerful to look forward to...)</i><br /><br /><br /><b>N.B.</b><i> *</i></span><b style="font-family: "helvetica neue", arial, helvetica, sans-serif; font-style: italic;">I really should put emojis on my laptop!* </b><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;">Is it really bad I miss them when I type on here?! ( </i><b style="font-family: "helvetica neue", arial, helvetica, sans-serif; font-style: italic;">*facepalm*... *ha ha*... ;-) ...</b><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;">)</i><br /><i><br /><br /><span style="color: #0b5394; font-family: "courier new" , "courier" , monospace;"><b> From the photo: going anti-clockwise here...</b></span><br /><br /></i></li>
<li><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b style="font-style: italic;">Radian B</b><i>, my favourite version of deep heat/ icy-hot/ ralgex/ etc. because it also has the perfect amount of </i><b style="font-style: italic;">capsaicin</b><i> in it: </i><b style="font-style: italic;"><u>0.01%</u></b><i>. More than this will make you forget your pain entirely, because you feel like your body is covered in </i><b style="font-style: italic;"><span style="color: red; font-size: large;">FIRE</span></b><i>; 0.01% is just enough to beat all the other heat rubs out there. It puts heat into the muscles; also helps with pain by </i><b style="font-style: italic;">slightly scrambling the nerve signals sent to the brain</b><i>. I really <b>love</b> the smell of muscle rubs.... they smell like my Dad used to smell when he came home from work when I was very young (when he'd see a physio after a game); they also smell</i><i> like gymnastics - </i><b style="font-style: italic;">the scent of my childhood: muscle rubs for sports injuries!</b><br /><br /> </span></li>
<li><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b>TENS unit:</b> <b>'</b></i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b>transcutaneous electrical nerve stimulation' </b>(sounds like another torture device, right?!) Actually, at certain times, this thing really is like <b><span style="color: magenta; font-size: large;">magic</span></b>. There are some pains that it doesn't do great with - specific nerve pains can feel like they are just buzzing more; but for some otherwise-untouchable pain, the TENS unit works wonders. It sends little electrical impulses between the electrode pads that can be stuck on the skin, carefully positioned to target specific pain areas. It has different settings-<b> buzzing, tapping, contracting, cycling through them (my 'surprise setting')</b> - and can be set at different levels of<b><span style="font-size: large;"> intensity</span></b>. Essentially it <b>'scrambles'</b> the sensations sensory nerves send back to the brain, scrambling the pain signals by confusing' them with other sensations.<br /><br /></span></li>
<li><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b>Pink spiky physio ball of torture</b> (not a dog toy). Rub <b><span style="color: red; font-size: large;">painfully</span></b> between your aching shoulder blade and a wall to improve<b><span style="color: red;"> circulation, blood flow, break up scar tissue</span></b>, etc. For more 'fun', have someone else (who can actually reach your back better anyway) rub it to '<b>desensitise</b>' high pain areas and super sensitive skin, and to break up tightness in muscles. Generally - roll it anywhere it hurts to improve blood flow and use it to</i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> <b>torture</b> yourself in the hope i does some good!<br /><br /></i></li>
<li><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b>Pink spiky foam roller </b>- this was deceptively packaged........ it is not in the slightest bit 'squishy' - <b>I thought the bumps would be good for clicking the subluxating ribs back into my spine</b> - and it is good for that. But bloody hell, a regular foam roller doesn't hurt! However, it's good for the crazy popping ribs, the assisted movement exercises & adds some unplanned desensitisation stuff just by lying on it! Which, with increasing pain, I have to admit is a good thing - although sort of in the way broccoli is a good thing when you're 8 - you really don't like it, but 1. it's good for you, and 2. dessert's only an option if you eat it!<br /><br /><br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="font-family: "Times New Roman"; margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="font-size: 12.8px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-size: small;">Pain relief arsenal.</span><br /><span style="font-size: x-small;">It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...</span><br /><span style="font-size: x-small;">#accessorize</span><br /><span style="font-size: x-small;">#thespikythingshurtlikehell</span><br /><span style="font-size: x-small;">#theyarenotsquishy</span><br /><span style="font-size: x-small;">#theydofixdislocatedribsthough</span><br /><span style="font-size: x-small;">#YAY</span></b></span></td></tr>
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<li><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b>Prescription pain cream</b> - a wonderful combo of <b>topical local anaesthetic, muscle relaxant and anti-spasmodic medication</b>. Made better by mixing with Radian B (& missing from the photo is a <b><span style="font-size: large;">genius find </span></b>- a very <b>soft-bristled, long-handled back brush </b>that I can use to apply the creams and rub them in thoroughly - if the pain cream is properly rubbed in, it's supposed to penetrate up to 5mm into/ below the skin & be absorbed better. It's pretty hard to do that, so <b>if you're reading this and use a pain cream, a soft bristled brush may be your favourite new thing for a while!</b><br /><br /></i></li>
<li><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><span style="color: #0c343d; font-size: large;"> </span><b><span style="color: #134f5c;">ICE</span></b></span></i><span style="color: #134f5c;"> </span>pack</b> - </i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>they are all resting on top of a giant</i></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large; font-style: italic;"> </span><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i></b></i> pack here, wrapped in the grey pillowcase. A perfect metaphor - <span style="color: #0c343d; font-size: large;"> </span></i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><i><b><span style="color: #134f5c;"><i style="color: black; font-weight: normal;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i><span style="color: #134f5c;"> </span></b></i></span></b></i>is absolutely the foundation of it all.... <b>still! </b> Sometimes </i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><i><b><span style="color: #134f5c;"><i style="color: black; font-weight: normal;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i><span style="color: #134f5c;"> </span></b></i></span></b></i>is absolutely still my favourite thing! </i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> There was a time </i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><i><b><span style="color: #134f5c;"><i style="color: black; font-weight: normal;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i><span style="color: #134f5c;"> </span></b></i></span></b></i>brought; the only respite from the pain; and I do miss that damn<span style="color: #0c343d; font-size: large;"> </span></i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i><span style="color: #134f5c;"> </span></b></i> machine, mainly because it's hard to </i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><i><b><span style="color: #134f5c;"><i style="color: black; font-weight: normal;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i></b></i></span></b></i> a shoulder - it's a funny, awkward shape and that shoulder pack hit all the right spots perfectly! </i><i><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"><b><span style="color: #134f5c;"><i style="color: black; font-weight: normal;"><b><i style="font-weight: normal;"><span style="font-size: medium;"><b><span style="color: #134f5c;">ICE</span></b></span></i><span style="color: #134f5c;"> </span></b></i> </span></b></i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">sometimes really is still the best pain relief, especially when my shoulder is irritated and inflamed and and numbing/ reducing swelling is the </span></i><b style="font-family: "helvetica neue", arial, helvetica, sans-serif; font-style: italic;">BEST</b><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;"> thing that works - especially with frequently random irritation and swelling which can be pretty horrid if it presses on nerves (um, <b>or more accurately just goes from its normal gentle press to a full blown, limb-numbing nerve squeeze</b>).<br /><br /></i></li>
<li><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b style="font-style: italic;">Hot water bottles (</b><i>not pictured; but I have 3) - I'm probably holding one against my ribs in attempt to keep the <b>muscles relaxed enough to breathe properly (because that's always good!)</b>...... my right rib cage no longer expands properly, making breathing difficult at times. I think it should improve, but stretching right now causes further spasming; my attempts are pretty pathetic - I need the passive stretching from hands-on physiotherapy while my muscles can 'relax'. </i><br /><br /><br /><i>*</i>I think the tight rib muscles got a lot worse after my car accident.... which I'm not sure I've mentioned on here....? I guess that's another one to add to my list of '<b>Update how UNBELIEVABLE my last 18 months have been</b>'. </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And I mean unbelievable in the sense that I am quite sure if I just sat down and rattled off everything that has happened to me in the past 18 months (/ 26 months / 6 and a half years / twelve years - really, take your pick! ) to someone who does not know me/ has never met me before, they 100% would <b>NOT</b> believe me.</span></li>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>Pinterest even had a perfect graph to represent exactly how every day feels <br />- and it matches too!<br />Seriously though, it really does get beyond frustrating. <br />So many things I wish I could do that just don't happen just now.</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-35669680877370631242017-01-18T00:06:00.000-05:002017-02-15T02:18:41.880-05:00Rest, don't quit<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And the best intentions always seem to be consumed by my body's utterly insatiable need for......... rest. So January was not filled with blog posts/ positive inspirations/ etc. Honestly, what can I say except sometimes '<i><b>sleep happens' </b>(and not always when I need it to happen; so when it comes in waves, I am taking advantage...... sleep heals? Right? - No. Honestly, I don't think so, if sleep healed I would be f***king superwoman by now; but everything else hurts less when I'm unconscious, so sleep still wins).</i><br /><br />There was a time I would <b>never </b>have believed writing one thing a day could be too much.... but there's a lot I know now that I would never have believed 'before'. Erm, for example that I actually <i style="font-weight: bold;">would</i> learn to rest!</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>www.pinterest.com/gmun22</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br /> <b><i>When </i></b>I am <b>healthy</b>, and <b>fit</b>, and <b>energetic</b>, and <b>strong</b> again <i>(positive mantras)</i>; <b><i>when</i></b> my perseverance finally prevails - I don't care that my body is probably going to try to remind me that<b> </b>'we'<b>*</b> are not in our twenties anymore; I am going to remind it that ALL it did for the majority of my twenties, and so far much of my thirties, was battle with me when I needed to wake up and.... well, do stuff; do anything really - how <b><i>hard</i></b> <b>every single</b> <b><i>physical</i> </b>and <i><b>mental</b></i> task is right now. It* has to make up for lost time.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Therefore when it* is able, when I start <b>bouncing</b> places again, instead of trying to hide a limp and struggle to match the speed of a snail; I will remind my body about all that time we* have to make up for.... I will remind it about aerial yoga, acro-yoga, indoor trampoline parks with foam pits and parkour-trampolining walls..... actually, and parkour, slacklining, 'mainstream' breakdancing..... all of it - I will remind my body that it was <b><i>just not an option</i></b> when I first read about it/ watched it and longed to try every single thing - that when I get my bounce back, I have over a decade to make up for!! And sometimes, that thought is exactly what I need to keep me going - whether it's battling through one day, or accepting that - yes - <i>'resting enables healing'</i>.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">www.pinterest.com/gmun22</span></b></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Yes, I have learned how important it is to rest. I have learned that there are types of pure fatigue and exhaustion that nobody knows how much rest they really need. That all the rest in the world can't fix 'tired' sometimes. But because I have learned this; I have also learned I will <span style="font-size: large; font-style: italic; font-weight: bold;">never, ever </span>take my energy or my health for granted when I get it back. I have learned I need to rest. I have also learned never to quit. Because despite everything - every puzzle, every mystery, every obstacle that I have encountered, I have eventually learned enough to fight it (<i>or sleep through it; cry through it - <u>embracing honesty, remember</u>! And it often feels far more like sleeping and crying dominate. Whatever way.... I have learned I can get through it; whatever that takes</i>). And one day, I want to look back over this and say I did enough to overcome it. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And perhaps that is the greatest lesson having both a chronic illness and a chronic injury with severe chronic pain has taught me - never to quit.... and within that, never to give up hope. One day, when I am back with the right people to help me and support me, I will win; <b>we will win (</b><i style="font-weight: bold;">there are more people than me invested in this journey - for them I am very grateful; but I need them.... and that's another post)</i>. I <b><i>will </i></b>embrace my dreams, goals, and feel like I can take on the world again. One day.<br /><br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /><b style="font-size: small;">I feel this truly expresses how it feels to fight Lyme</b><br /><b style="font-size: small;"> </b><i style="font-size: small; font-weight: bold;">and </i><b style="font-size: small;">a chronic injury (/chronic pain).</b><br /><b style="font-size: small;">I look forward to the day where I look at a fresh challenge and can smile.</b><br /><span style="font-size: x-small;">( pinterest.com/gmun22 )</span><br /><i style="font-size: small;">(It easily covers each individually! So double fight = double reward?! Please universe....?!)</i></span></td></tr>
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<span style="color: #073763; font-family: "times" , "times new roman" , serif; font-size: large;"><i><b>"The danger is not that we aim too high and we miss it, </b></i></span><i style="color: #073763; font-family: times, "times new roman", serif; font-size: x-large;"><b>but that we aim too low and we reach it."</b></i></div>
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<span style="color: #073763; font-family: "times" , "times new roman" , serif; font-size: large;"><i><b>- Michelangelo -</b></i></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><u><b>*Geek Moment:</b></u></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>*</b>'<b>we' -</b> so the linguistic geek inside me finds this pretty fascinating..... it is very normal for someone with a chronic illness or injury to see it as something that is not a part of them and to talk about it either in the third person <i>(N.B. This is <b>not </b>the same as just generally referring to yourself in the third person. In some cases, it's batshit crazy.)</i> or as something belonging to them: <i>'my shoulder was not happy today'</i>. It sounds a bit crazy, and when I became aware I had been doing it quite a lot (slightly questioning my sanity); I stumbled across an article on chronic pain that talked about it a bit (and said it was <b>totally normal, not a little bit crazy!</b>) I think it would definitely make a cool topic for a thesis (I declared <b>'geek'</b> as a heading here, therefore 'cool' and 'thesis' can totally be used in the same sentence). <br /><br />I've noticed other people facing severe health issues do the same thing too. I just thought I'd clear up the use of '<b>we</b>' as I do it quite a lot and I don't want anyone to think I've developed a second personality along with everything else..... Personally, although I haven't really researched it much, the idea of separating yourself from an injury or illness, by not seeing it as a part of you, makes a lot of sense to me. It's not the person I want to be, or how I want to be defined, but it does feel like a massive part of me, something that is permanently attached right now, so I do have to acknowledge it. I think it's probably even more common in 'short-term chronic illnesses' - i.e. I fully intend to recover. I do know that I may not ever get to 100% again, but I know I will improve way beyond where I am now with the right medical support and treatment. So right now, it is a part of me, and right now, I feel it defines me in some ways....... or defines the life I live (or don't live) right now. It is a part of me; but not quite. It makes perfect sense to me that it is psychologically healthy to see it as something you are living with, yet also battling; something you have to figure out a way to coexist, while also planning its ultimate demise, and your ultimate victory!<br /><br />(If this explanation has just made something you hadn't even noticed even more complicated.... #sorrynotsorry - it's good to exercise the brain! ;-)<br /><br /></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com0tag:blogger.com,1999:blog-1139283891068820968.post-5400724147588589192017-01-10T02:39:00.000-05:002017-01-11T01:51:43.516-05:00Catch up: Dementors, resolutions & good wishes for 2017 <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">OK, it's 10 days into January, so I might be pushing it a bit with <i style="font-weight: bold;">Happy New Year </i>wishes, but in my defence:</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">1. I (<b>'we'</b> really, but I'm writing) have had the winter cold/bug/virus/ that escaped from Azkaban & has held my family tightly in the icy grasp of a Dementor's kiss for about a month now..... a couple of us were better at conjuring up a Patronus (aka immune system response) than others & given I already battle multiple Dementors on a daily basis, I couldn't even tell you what form my Patronus assumes (although I'm pretty sure there's no stag or doe 😔). </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>I may have been wrongly sorted.</b></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDvbL14aIkHSZ7fj4kFuhLgiZE-0i4SP9CvCeZSNjMEHK8NxVrL8n9tV3aG32A_2ldlBK_EOJyJEqFoBw2KmVnLhGTqUlDZaZPNZsvrJ_fAxelVGI1UoWO5y9VR-27GYKWFkx81ovwfJc/s1600/AboveTheCurve_PatronusCharm4-f.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDvbL14aIkHSZ7fj4kFuhLgiZE-0i4SP9CvCeZSNjMEHK8NxVrL8n9tV3aG32A_2ldlBK_EOJyJEqFoBw2KmVnLhGTqUlDZaZPNZsvrJ_fAxelVGI1UoWO5y9VR-27GYKWFkx81ovwfJc/s200/AboveTheCurve_PatronusCharm4-f.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Or Google might have the answer....</b></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I shouldn't really need to add to that. I think 'Dementor's kiss disease' should be the ultimate excuse; but I do genuinely have other reasons:</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">2. Through the brain fog, the darkness, and the Dementors' kisses of horror, I did remember my 'personal resolution' (not so much a new year one, more of a personal aim ) is to blog more again. It can be cathartic, it often serves as a good way to sort of 'talk to myself positively' & search for positive quotes and images which do exactly as they are supposed to, and instill further positivity & motivation. It's a great habit to get into, but it's easy to get sucked out of it (this metaphor <i style="font-weight: bold;">totally </i>works!) when things get tough.... which brings me to my true personal aim: to try to be more honest - both with myself and with other people, regarding my health, and capabilities (or lack of them, it often seems right now). </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Last year was an incredibly tough year, and I did withdraw from the world a bit. Not exactly on purpose, more in a subconscious act of self-preservation; but I'm going to try really hard to move on from that (or spill it all out of my head, perhaps) and truly hope this year is a better one for my family, many friends who seem to have had a really shitty year too.... and the world, which seems to have been just as badly affected. I <b>am </b></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">determined to put 2016 behind me & to hope for good things for the world this year too, as so much uncertainty looms ...</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> ... So I <b><i>have</i></b> been writing. Honest!! They're just all 'drafts' right now that need to be finished & edited before I can hit that orange 'Publish' button! So this post explains why my next few are going slightly backwards in time first - then I'll get on to that whole 'new year, new motivation' thing...</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Not sure where my 'Dementor's cold' came from, <br />but this may evolve into a massive 'Lyme metaphor' - it's perfectly fitting. <br />I just need to </b><i style="font-weight: bold;">Expecto Patronus </i><b>enough to find that borrelia-immune Bambi.</b></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i style="font-weight: bold;">(Maybe it will work against political leaders too.... or free up the Dementors to get them...hmm.</i></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i style="font-weight: bold;">I think I may need a wand more than nail polish </i><span style="font-weight: bold;">😉</span><i style="font-weight: bold;">!!) </i></span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">3. It's the 10th. That is 2.74% of the year (really, I just checked). I've been asleep for AT LEAST 50% of that time, maybe more (<i>honesty!)</i> 1% of the year hardly counts . ... SO....</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> </span><b style="font-family: times, "times new roman", serif; font-size: xx-large;"><i>Happy New Year!</i></b></div>
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<b style="font-family: times, "times new roman", serif; font-size: x-large;"><i>Or as it was yelled in our house,</i></b></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b><i> "F*€k off 2016... may 2017 be much better!"</i></b></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: medium;"><span style="font-family: "times" , "times new roman" , serif; font-size: large; font-style: italic;">(Actually wasn't me yelling, I just thought it too!)</span></span><br />
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<span style="font-family: "times" , "times new roman" , serif; font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Lets's start with an old favourite:</b></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "times" , "times new roman" , serif; font-size: large;">"Life isn't about waiting for the storm to pass, </span></b></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "times" , "times new roman" , serif; font-size: large;">it's about learning to dance in the rain."</span></b></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>~ Vivian Greene ~</b></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>And one that is perfectly fitting in every way:</b></span></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com2tag:blogger.com,1999:blog-1139283891068820968.post-16321827740091759062016-12-08T23:22:00.000-05:002018-03-02T15:48:52.904-05:002016: Lost for words<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><span style="font-size: medium;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><i>Lost for words</i></span><br /><span style="color: #999999; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">[Originally written on my phone & full of typos *shock*. Edited early 2017, with additional content.]</span></span></b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Yes! You read it properly (twice, just to be clear)! I have not been very good at blogging this year - specifically for 16 months, really, because life became so jumbled up & messy, I genuinely couldn't (can't) find the words to describe it all.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Anyone who knows me personally, or who has followed my blog may be having some doubts right now... I am not one to be <i>stuck for words. </i>Ever. And I'm not a fan of being stuck for words - so this ends now! For once I am making a 'real' new year's resolution to focus on my writing (blogging included obviously; but <i style="font-weight: bold;">all</i> my writing projects); and art projects in 2017 - a year of creativity. Art heals, right?!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">However, as December is quickly passing by, and a new year approaches, I feel this urge to try to 'get it all out' - out of my head, free to float around in cyberspace instead of in my own mind - so I can move forward and approach 2017 with a sense of <b style="font-style: italic;">optimism </b>and<b style="font-style: italic;"> hope.</b></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">To 'get what all out'? My subconscious asks me - <i>all that stuff you just said you have no words for?</i> Well.... yes. I haven't figured out how that will work: if the words need to be written, or if I can simply <b>THINK </b>stuff out of my head. Either way, I'm trying. Perhaps simply starting to write will draw it out of me, either tangibly (or maybe through some sort of intangible higher-consciousness superpower that writing, blogging and thinking can combine and combust when I try to put certain memories into words.... it's a cool idea - what a great way to eliminate trauma, or negativity... okay, I think I've watched too much Black Mirror. I <b><i>do</i> </b>know that's not really going to happen - it's been a hard year, but I've not totally lost it; my imagination remains happily, crazily intact though!</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">) <i><b> Moving on..... </b></i>in the real world outside my head.... perhaps I will find the words; or perhaps writing about different things will provide a release anyway. Really, I just need to clear some space in my head for positive thoughts for next year. I don't exactly know how (<i>did you guess?!</i>)</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">.... I'm just diving in anyway.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This particular blog post started on instagram, in a blurb about a painting I posted. I have been attempting a 'challenge': <b><i>100 days of creativity. </i></b></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I did it last year, and it was great ambidextrous therapy, following right shoulder and left wrist surgeries, so - with the same underlying physical reasons, and the whole art therapy idea, i started it again in April this year, but things just continue to overwhelm me.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">January 2017 will mark 12 years of severe chronic illness (& injury) for me. Out of 12 years, i can honestly say this year has been the worst. It should have been a year where improvements continued; instead, improvements seem to have crumbled, despite my best efforts to continue building on them; my Lyme-related issues have firmly nosedived into major relapses; and my strength and emotional well-being seems to have been tested at every point. It has been a <b>TOUGH </b>year, and it remains difficult to delve into every detail.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I gave up on this art challenge after spending quite a bit of time in hospital in the summer, and even longer being<b><i> 'iller'</i></b> than usual between my stays in hospital. It's just one point that leaves me stuck for words, because after about 3 months of feeling severely ill (on top of my 'normal feeling like sh!t), a total of 21 nights spent in hospital, over multiple admissions;</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> I have no answers. Symptoms have somewhat calmed down, but flare up sporadically. I still feel <b><i>ill</i></b> again; 'it' has not been fixed, 'it' has not gone away, but I have given up on answers for now.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I later I decided to finish this art challenge. It might seem silly, but it has come to represent something bigger; it may be my only 'accomplishment' this year (although <b>survival</b> probably surpasses it!). So I have 22 days and 28 pieces to post 😞.... but in a silly way, it represents my year. So I WILL finish! & if I can squeeze that in, hopefully in some crazy way it will help me leave 2016 behind & move on to 2017 looking forward. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">There is a large part of this that I feel mirrors 2016 globally too and hopefully the world can move on in a positive way too. Hopefully instead of divisiveness that dominated 2016, humanity can come together & support one another. Hopefully 2017 can be a year filled with compassion, love, safety & unity (& <b>good karma!</b>) This safetypin movement -inspired painting seemed the perfect place for trying to start somewhere (again!) with my blog.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Initially I started this blog to raise awareness about Lyme Disease; it quickly became an unexpected method of communication - somewhere I could upate friends about my shoulder, as I was not allowed to spend much time online following surgery. Over time it became quite cathartic as well, at times an outlet for a frustrating long recovery, and many times a place for positive quotes to self-motivate. It has helped me stay positive & optimistic - and enables me to 'meet' other people with shared experiences. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I very much hope I can get back to writing and continue all of those things in the new year.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMRN6s5L694-IaMyrB-CBElA8B70yP5Nm7w-8ED0Jtr-oZs92QelEd5_0QEvntbrDRRlAJ7WC43vv6eDdT6jXIH9kBnMig60xo49ULSMXwHW96hEjFE8gAgJ0QWKo_jI_kvK5GXYfFGfM/s1600/IMG_20161209_025507.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMRN6s5L694-IaMyrB-CBElA8B70yP5Nm7w-8ED0Jtr-oZs92QelEd5_0QEvntbrDRRlAJ7WC43vv6eDdT6jXIH9kBnMig60xo49ULSMXwHW96hEjFE8gAgJ0QWKo_jI_kvK5GXYfFGfM/s320/IMG_20161209_025507.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Multicolored Safety-pin<br />
#safetypinmovement</td></tr>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>"You must be the change you want to see in the world."</i></b></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>~ Gandhi ~</i></b></span></div>
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out of the lyme lighthttp://www.blogger.com/profile/12680081131143924569noreply@blogger.com2