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TMI? On rocks and hard places
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Mood:
dismayed

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I thought I was being brave and tough and noble and reasonable when I went to see my doctor yesterday. Many of you have heard my tales of woe* over the years and know that I have weird bones, undiagnosable conditions and a history of somewhat partial failures of surgical procedures. I have had three orthopedic surgeries, and despite all sorts of progress there, I'm unlikely to have another. I am, as you've heard me say "not a candidate for surgery".

But yesterday, I saw my physiatrist. You can look it up but it's also called "rehab medicine" and focuses on nerve, muscle and bone conditions. I started seeing Julie Hodapp when my orthopedist essentially (and for good reason) fired me as a patient. I was not appropriate for treatment by what is after all, a surgeon. Every other doctor in the field was getting heavily into replacements - knee, hip, shouder, eyebrow (how'd that get in there) and for numerous reasons (thinnng bone, bones that fracture and do not knit) I was not about to go for it. Were I, ahem, normal in even a remote way, I probably would had had, or at least considered hip replacement surgery. Nowadays it would be knee surgery. Most recently, shoulder surgery.

Here's the thing. Dr. Hodapp, a young, empathetic and brilliant diagnostician (she really is) has never ever been wrong about me, my body, what I need and what I should be doing. It's not that she can't be wrong, of course she can (hell, I'm 62 and I know about doctors) but she has seen things that it's taken me months to discern. She has prescribed things and pointed stuff out and talked to me about my body's peculiarities and problems for, well, what eight years? More? And she has always been right.

So going in to see her saying "well, I think I'm facing shoulder surgery" and seeing her almost scowl stopped me in my well-worn tracks. Dr. H had advised against it before, and while I had consulted with an orthopedic specialist years ago about my defunct, failing rotator cuff, even the specialist felt the operation was too risky. It still is. Maybe more than ever.

So much for my being brave.

While Dr. H does not talk doom and gloom, the "worst case scenario" which is not wholly unlikely is that I would be permanent disabled in a way I cannot afford to be - if I lose what remains of my left shoulder function, as a wheelchair using woman, I lose the upper body strength and ability that I need to manage. To sit up, to control the chair and its many features. This is not a surgery that I could go home from: as I would be unable to use my left arm and shoulder, I would end up in rehab or a skilled nursing facility. And that worries her.

And worries me. Given how much I know about the latter, I'm aware of what would be needed to get through such rehab. I don't have the strength to advocate for myself, or to cope. I know that it takes a lot of work, of advocacy and pushing to get what you need in a nursing facility. I have had months and months and months of learning all that. I cannot do it. Not now, maybe not ever. And the worst case scenario is frightening - that I would end up not being able to leave, as things worsened, deteriorated, or the surgery didn't fix what was needed.

So yesterday, I had a shoulder MRI. The issue lately has been not the rotator cuff but tendons. I began exercise months ago with the idea that strengthening the muscles around the shoulder, as well as the ones in my other shoulder, would be smart. And it would be. If I were, er, normal. Instead I've had recurring tendonitis and most recently, it appears that my biceps tendon is going/shredding/gone.

If you've dealt with shoulder stuff, you know the utter frustration of not being able to lift your arm. My range on my left is simply awful. Everything is difficult I can do less and less. And I'm sorta kinda terrified of overwhelming my right shoulder which does have rotator cuff damage.

So surgery is most likely out. I have learned to listen to Julie Hodapp. She sees me. She gets me. Whatever the MRI shows, it will likely confirm that surgery would not help. Then we get to discuss stuff like OT and PT (OT would be very welcome. Learning how to carefully dress yourself when your arms and shoulder are in screaming pain (even with the fabulous pain meds I take) would be so welcome. And letting go of the idea of living independently may be part of this too. I've known that for a while. I need help. I was seriously waiting for Stu to come home because the help he would have gotten would have helped me too. Reaching is a constant challenge. Standing on those weird hips is getting harder. Recently, when the building's only front loading washing machine broke, I was stuck with laundry (I can't use top loaders. Reaching in for wet towels? Damn difficult, isn't it?) a friend took my laundry and washed, dried and folded it for me. I liked that more than I would have guessed. I like doing stuff for myself. I don't like ceding that to others. Guess what?

So best case scenario? I have no idea. I haven't seen the MRI results nor talked with the doctor since yesterday afternoon. It's not good, no matter what. Every few months, I seem to lose more.

*Oh woe, oh woe, oh dreadful fucking woe." (Second City Comedy Troupe, circa 1988 when Stu and I saw them in the Boston area)


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