Tuesday, September 16, 2014

It's not ok and I am not fine

So, it seems I will be having another shoulder surgery. I don't know how many times, how many years in a row I can type out the words "this is so unfair" or "I can't believe this is happening". I re-read my posts from last year around this time, and the emotions are sobering and similar, only amplified. It's worse this time around because the last surgery was supposed to fix my shoulder - and so was the one before that, and the one before that. It was supposed to buy me a few years - maybe five or ten - to bridge me through into my forties. And it didn't. And I feel cheated.

I am not fine. It's not ok. It will likely never be ok. This is going to be a ongoing and increasing struggle for the rest of my life. And some days, I just don't want to get out of bed and face it all. I have too many responsibilities to curl up in a ball and cry. But it's really tempting some days.

I am overwhelmed with emotions of grief, anger, betrayal, emptiness coupled with constant pain. Sometimes I take the medication and feel better, sometimes I have a scotch or two, sometimes I just simply cry. This disease take so much from you. With four shoulder surgeries in five years, and four flares this year alone, it's not been a good year.

As I progress closer to my surgery date (30 days and counting), my ability to keep it together is tenuous at best. And when I pause to sit and think about it, past surgeries have provided a similar emotional roller coaster in the final few weeks. Currently, my emotions are loosely packed in by thread with lots of scissors in my life waiting to expose my current - and fragile - emotional state.

I went to a concert by the band "The National" last Friday at Folk Fest here in Ottawa - one of my favourite bands of the past year. I've been listening to their recent album for the better part of a year, but hearing their song "Graceless" live, I attached myself and my current circumstances to the lyrics. I've not been as graceful about this surgery as I would have liked. There is no stiff upper lip, keeping calm and carrying on. I'm pissed. And vocal. And I hate this. It's not ok and I am not fine.

Tuesday, September 9, 2014

Dreading the keyboard

I've not written in over two months. It's not for lack of excitement in my RA life, it's likely due to overexcitement. I just can't seem to bring myself to write down the amount of poking and prodding I've been through this summer - somehow this the final step in accepting that I am having a total shoulder replacement on October 16th. There I said it.

This summer I've had a shoulder biopsy, three bone scans, series of x-rays and blood work all in an effort to rule out an infection in my right shoulder. When the results came back negative, I was relieved, no one wants to deal with the extensive pain and procedure involved in managing an infection in a artificial joint site. At the same time, it was hard to hear. What it really meant, was that all the pain I've been feeling in my shoulder was all mine and could not be explained away by an infection. And it was a tough pill to swallow. If I didn't have further shoulder surgery, this would be my life and my pain forever. And it's unacceptable. Right now, I'm taking from one to five Tylenol 1's per day to manage the pain. That's up to 40 mg of codeine a day to manage the pain. I'm not comfortable with that as a lifelong ongoing pain management tool. It's off to surgery I go.

I'm essentially having a total shoulder replacement this time. This is my third surgery in as many years. They are removing bone from my iliac crest in my hip and grafting that into my glenoid (socket part of the shoulder) and replacing the humeral head hardware from my current smaller implant into a full 10 cm stem that runs down the shaft of the humeral head. Essentially, more bone, more metal, more robust shoulder.

I've struggled sorting through what I think about all of this. On one hand, I feel like I'm watching a movie of someone else's life - like I have many times before on my RA journey. But I'm not that lucky. There is no dream to wake up from. This is it, man. This is my life. And I'm still trying to process. I've taken quite while to publish this post, but I always had a song in mind - Oasis, "Don't Look Back in Anger". I'm looking back. I'm angry.