Saturday, August 29, 2015

4 surgeries - 1 year

In 47 days I'll be going for my fourth surgery in one year and my seventh in six years. How the hell did I get here?

Surgery #1 - 2009 - total shoulder replacement, left, resounding success
Surgery #2 - 2011 - humeral head replacement, right, success
Surgery #3 - 2013 - glenoid bone graft with crushed cadaver bone, right, failure
Surgery #4 - 2014 - glenoid bone autograft and humeral head re-replacement, right, success
Surgery #5 - 2015 - screw removal from surgery #4, right,  partial success, infection discovered
Surgery #6 - 2015 - removal of all hardware and insertion of cement bone spacer, right, success
Surgery #7 - 2015 - removal of bone spacer and reinsert hardware, right, TBD, scheduled for October

No wonder I'm so angry. April was an utter shit show of a month. I had minor, arthroscopic surgery in late March, found out I had an infection from my October surgery in April, went on IV antibiotics and had a central line inserted (which is a much bigger, life-encompassing deal than the small words "IV antibiotics" and "central line" lead you to believe), had an allergic reaction to said antibiotics on and around my 40th birthday, landed in emerg, went on more IV antibiotics for 6 weeks, had a major surgery, and then recovered. Oh, and I've been flaring on and off. It's nice the root cause of my surgeries - RA - continues to rear it's ugly head just in case I tried to forget why I'm going through this hell in the first place.

I've not written about this yet. I've put myself on emotional autopilot to ensure that I don't really think about it, motivated by self-preservation I assume. It wasn't until I wrote this post and listed all my surgeries did I realize that I'm going on surgery #7. I thought it was #6. I guess somewhere past #5 I stopped keeping track.

I've managed through the past couple months one step at a time. That's all I can handle. With the final surgery looming in October, and summer on its way out, I don't think I can dodge the inevitable any longer. My countdown app tells me 47 more days until I'm in for surgery and I feel my veneer of happiness slipping away in the time it's taking to write this post.

I referenced the movie "Cake" in my last post and the movie (and music) have stayed with me. It's the closest representation of my RA journey I've seen so far on the big screen. The song played during the credits was an acoustic cover of BeyoncĂ©'s song "Halo". I can't seem to find anything positive from my past six months, but this song reminds me to try.

Wednesday, August 19, 2015

It just really, really sucks

Given my track record of not posting when the going gets bad, not posting since February would therefore indicate some pretty terrible months recently. That would be an accurate deduction. I don't even know where to start, so we'll start with today and work backwards.

Today I had a shoulder biopsy. It was the third one of my RA/shoulder surgery career. It hurts. It is my most dreaded procedure. It is emotionally and physically draining. It involves sticking six needles in your shoulder joint to obtain cell samples to ensure there is no infection prior to surgery. A necessary evil. The reality looks more like me lying in a radiology suite sobbing for 45 minutes, using all my yoga training and deep breathing to keep as calm as possible and barely succeeding. 

Biopsy day came hot on the heels of a rheumatology appointment yesterday where I was injected - for the first time - with cortisone via IM. That was new. Usually my cortisone comes in the form of joint injections or oral tablets. My joints overall are quite poor right now, and I needed a boost. I'm off my fancy arthritis drugs given the frequency at which I seem to be returning to the OR for shoulder surgery. The drugs interfere with my ability to heal, which is incompatible with surgery. Yesterday I got jacked up on 'roids. For real. I should be feeling physically better in the next day or so, but the emotional side is taking longer to work through the "why" of these procedures. 

I'm having a hard time reconciling the events since March 29th, and I haven't really tried all that hard.  Writing this blog entry is the first time I've tried to encapsulate what's happened. And I'm failing miserably. I don't know how to say in different words, the separateness that my RA creates in my life. I don't get to escape this. It's etched into my shoulder everytime I look in the mirror, it's etched into my hands in their deformity, and in my face as I cringe in pain. Every. Single. Day. 

I'm tired. I'm just so utterly, gut wrenchingly exhausted of having RA. Especially these past months. So tired it hurts. So tired I just want to pretend it's not happening. I just don't have any more emotional or physical energy to spare to write, speak or think about it. I'd love to go a day where I'm not sick. Where I don't have to take any meds, where I don't have to worry about what I can or cannot do in case I run out of enegery. A day where I don't have any pain. At all. For just 1 day. That is so unimaginable, like winning the lottery. People have dreams of all kinds - money, fame, happiness. All I want is a pain and RA-free day. 

In the midst of these medical appointments and RA-emotional meltdown, I watched the movie "Cake"- a gritty look about a women dealing with chronic pain. That hit pretty close to home. The trailer uses Hearts' song "Hemiplegia" which speaks to me of fighting a battle you might not win, and might never end. Very much mirroring my fight with RA.