Hoping for answers

Tomorrow we are leaving for our FOURTH trip down to Lexington, KY.  I am really hoping it is going to be as worthwhile as the last three journeys.  I would like to hope that this will be the last trip we have to make to Lexington, but I honestly don't know if that is realistic.

At the end of last week, Angelo my physio took some measurements while he was doing my passive range of motion exercises and it wasn't good news.  My measurements have actually got WORSE since June.  My shoulder capsule is tighter than it was before.  He did tell me that it's not by a huge amount, but it shouldn't be going backwards at all.

I was very upset.  I don't know what I can do to make a difference.  They gave me loads of exercises to do and I did them religiously and then they told me I was doing too much, my muscles all needed time to rest and recover.  So I dialled it down.  I followed the new exercises since June very carefully.  I did exactly as I was told. I did not do too much.  I did start to feel a bit better, but I don't feel that I can do LOTS more on a functional level.  I feel so frustrated that the advice I keep getting is that I need to rest and heal.  I am now 24 weeks post-surgery.  I thought that at this point - surely! - I would be concentrating on rebuilding strength and flexibility; not on still learning how to move my shoulder certain ways..... or even worse, NOT being able to move my shoulder certain ways.

My parents say they think I am holding myself funny, or that I'm not trying to use my right arm and I feel so upset to hear that is what they see.  It's not that I don't try to use my right arm - I really do try - it's just that it doesn't really work properly.  I simply CAN'T make it do certain things, I don't know how to explain it because I've never experienced anything like it before but when people say that I "can't tolerate that movement" or that I "need to relax the muscles" or that I need to "try drinking with that hand" and they are just pointing out what they SEE, what they don't see is how many times I try to do the movements in front of a mirror, in pain, just to see if I can MAKE myself move that way.  I CAN'T.  I hate the thought that people think I'm not TRYING to move because I try all the time.  But I just can't make my scapula move.  

There is a possibility it is quite literally stuck down by scar tissue.  I don't know how this can be fixed.  I have had some incidents that hurt like hell, usually end up with me sweating, crying, feeling nauseated and seeing sparkly lights and black spots; I have come to recognise these as scar tissue breaking up.  But they don't seem to give me any freer movement, as you'd think they might.

One doctor last year suggested I might need to be put under anaesthetic and have my shoulder moved quite violently to break up the scar tissue - if that is actually what is sticking it.  I am actually at the stage that this option sounds attractive. As long as they gave me adequate pain relief for afterwards.  The longer the pain persists at a high level, the less I feel I can tolerate it.

I have had quite a lot of scar tissue breaking up in the last few weeks - and in fact since my surgery.  I've been told that it's happening more than they'd expect.

I know my pain is less than it was immediately after my surgery when it was just unbearable all the time, but it is still pain that I'd rate about an 8 or 9 out of 10 when it is at its worst. Mostly, it's probably about a 6 although it rarely goes below that.  I still need very strong painkillers every day (and muscle relaxants, and anti-nauseas, and sleeping tablets).

This trip I see the surgeon on the Monday morning and then the shoulder therapists are going to work with me on Monday, Tuesday and Wednesday, so we are hoping that spending that bit longer with them will be productive and will help me move on from here.

It's been really hard these past few weeks as we've had friends and family visiting with us from home and I've been too sore and too exhausted to do all the things I'd have liked to do with them.  It is still hard for my posture muscles to support me when I'm sitting, so sitting with my arm and head unsupported for any length of time causes my neck to spasm and me to get very dizzy and sore.  They told me these muscles are basically "starting from scratch" and they have no endurance and it will just be time they need.  There is nothing I can do that is helpful.  I do have little exercises, but I'm not allowed to do lots of them as the muscles very quickly tire out, and the same symptoms appear when the muscles are tired.

So I am feeling very flat right now and I honestly don't know what I'm going to do if I don't get some answers on this visit.  I am really struggling to cope with the pain and complete lack of function in my right shoulder and right arm.  Hopefully they can offer me something NEW that will give lots of improvement. 

"Insanity: doing the same thing over and over and over again and expecting different results."
          ~ Albert Einstein