It seems that slippery slope I referred to in my last post landed me in in the Grand Canyon of joint pain, erosion and immobility.
As always, it started with a trip to my rheumatologist. Nice guy. Good care on a consistent basis. A few times when I've been flaring he's taken my call and talked about medication adjustments. I see him every 4 months, give or take.
My shoulders weren't working so well. Anything where I was reaching (doing laundry or reaching into the back of a cupboard) or lifting (mainly small children) or above my head (washing/styling my hair, overhead cupboards) wasn't all that easy for me. And this applied to both my shoulders fairly equally. At times there was shooting pain, dull pain, resting pain or little creaks, twinges and nigglies. It was getting harder to do day to day activities.
I asked my rheumatologist about my shoulders. He initially seemed hesitant about getting X-rays until I insisted a little. Always good to be a strong advocate for your own health care - you know your own body. I knew that there was damage, but I wanted to know how much. My first set of X-rays were taken in March 2008. At my next appointment the radiology report indicated almost no space left in the joint and that there was significant damage. The average non-RA person would have cartilage to create space in their joint so it moves smoothly, without pain. My RA eroded my cartilage and was started to move bone-on-bone. Yes, that is as painful as it sound.
This wasn't great news, I knew that much, but the thought of surgery never entered my mind, even when I was referred over for an orthopedic consult.
As with any specialist, ortho surgeon consult appointments are about a 9-12 month wait time here in Ottawa. So I put it to the back of my mind. Fate, it seems, interceded on my behalf as after only 2 months I had my consult appointment. It was a Friday in December of 2008. John, my husband, came with me. My surgeon, like most surgeons from what I hear, was not so great at the people skills. He did a physical exam and looked at my shoulder films. And then told me the most unexpected and devastating news - that both shoulders needed to be replaced, relatively soon.
I don't really know what I was expecting from the appointment. If I'm really honest, I thought surgery would be a few years off. My functional ability was OK and I had some pain, but I wasn't completely disabled.
The damage in both shoulders was equally bad. The surgeon explained that there comes a time where surgery is not possible as there is not enough of your own bone to work with and the repair can't be done. If I waited too long, I wouldn't be able to even have the surgery as my shoulders were deteriorating at a fairly rapid rate.
Given his people skills, it then turned into an awkward and - in retrospect - funny conversation. He asked me if I wanted to book a date for my TSR (total shoulder replacement) now, or if I wanted to think about it. I felt like I was buying a car - you know that pressure to make a decision right then and there? Strange concept to apply to your healthcare. I said I needed to think about it and would call for another appointment when I had made a decision.
And then I left the exam room with John and I started sobbing. Full-body sobs. We walked around the hospital in all the wrong directions trying to get out to our car, but not really knowing where we were going. This was the first time that I ever remember being in shock. This news wasn't mine. I was too young, I mean who has a TSR at the ripe old age of 33?
This day easily made my worst top 5 days ever.