Today (Feb 28th) is Rare Disease Day - it also happens to be exactly 6 years ago since I had my scapular muscle reattachment surgery (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.
I write this as I am infusing IV antibiotics into the PICC line I've now had for 9 months to treat Lyme Disease - another rare disease... or under-diagnosed, even Google is a bit confused here:
|Newest Lyme treatment - hard-going, but I think I am slowly...|
tentatively... making some good progress
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 Thoracic Outlet Syndrome & Complex Regional Pain Syndrome (CRPS/ RSD). 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: 'inferior shoulder dislocation' (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: "if you didn't have skin, you'd have ripped your arm off." Some other injuries that occurred in that split second: brachial plexopathy & 'overstretching' injuries to my entire upper right side nerve network; various muscle tears, pulls & strains; other soft tissue damage, including damage to my fascia; & bone injuries, including a scapular fracture (they account for <5% of fractures, just FYI). So dear every doctor I may see in my life - if you hear hooves, think freaking unicorn!!
|Photo excuse: sometimes being ill means being stuck in bed.|
(I did not seek this out for this post!! I did play with silly Facebook filters. 😜)
Added to the messy shoulder + Lyme mix has been post-concussion syndrome (/'minor traumatic brain injury' - 'minor' refers only to the amount of time spent unconscious /disoriented); 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. Isn't my karma fantastic?! Urgh! 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 brain injury. 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 'headfuck' - in every way!
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.
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.
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.
|Real progress! |
Working a lot on flexibility, lower body strength,
and increasing my shoulder & arm movements with supported movement
There are many types of 'rare disease' & 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 'invisible illnesses' (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.