Sunday, August 18, 2013

How am I gonna be an optimist about this?

I give up. I'm done. I'm out. I just want to curl up in a ball and cry for a few days. I'm sad. I'm mad. I'm in shock. I'm incredulous that this is my life. A Hollywood tear-jerking drama has nothing on me this week. You really can't make this up.

It's been 22 years of pain, inflammation, doctor's appointments, drugs and that constant knowing that your life is likely a little less because of something you had absolutely no control over. I'm tired. I've lost my fight. It's been a tough 22 years, and I'm just bone-weary tired.

I've got scotch and a sad music on. I spent much of last week working a lot and informing colleagues, family and friends of my impending surgery.  To say it was an emotionally draining week, would be an understatement. I'm exhausted. I can't take anymore sad eyes staring back at me as I explain that the shoulder I just had surgery on a mere 21 months ago needs further repair. I feel like I'm talking about a life other than my own. I have a detached third party view - like it's not actually my life. But it is.

It's not the surgery itself that bothers me. It's the mountain of pain, dependence, disability, rehab and feeling like a lesser person that looms behind the surgery date that I'm overwhelmed and saddened by. This isn't my first rodeo. It's my 3rd. Yes, you read that correctly - 3rd shoulder surgery in 4 years. Have I mentioned I'm 38? It's just so unfair. There. I said it. It's unfair. I'm so very angry with the universe. I'm not ready for the "silver linings" conversation. I'm not interested in being happy or seeing the bright side of things right now. I just want to wallow. With a giant bottle of scotch. Beautiful 16 year old Glenlivet. Not a long-term solution, but this week it seems to be doing the trick.

I'll pick myself up. I always do. But for now, I just want to be sad. I was trying to find the most melancholy and gut-wrenching song to attach to this post. But over the weekend I found some lyrics and a song that sum up my situation. Bastille's "Pompeii" where they ask "How am I gonna be an optimist about this?". Excellent question. I haven't figured out the answer yet.

Wednesday, August 14, 2013

You've got to be kidding me.

It's been months. Again. And it's been a tough couple of months for me. I've been avoiding the keyboard, thinking that once there is a crack in the dam, it's just going to all come out. One giant rush of pain and emotion. So here's my best effort to say what I need to say and keep the dam intact. I feel like I have to start somewhere...

On the plus side, I've been running and biking. Feel strong, great - sporty, even. The downside is my right shoulder has become incrementally increasingly painful, sore, swollen and less usable.

The tipping point for me was washing my hair. One day, I couldn't manage to raise my right arm high enough to wash my hair. This is the same arm that I had a partial shoulder replacement done about 20 months prior. And I found myself crying in pain and frustration in the shower in the middle of June. Sobbing, really. It's funny how joint mobility is a slippery slope down, until one day you realize "Wait a second, I used to be able to do that". And now you just can't because it simply hurts too much.

Back to the surgeon I went in late June, and I took my 8 year old son this time. I'm slowing trying to introduce him the medical side of my life at an easy, "it's no big deal", introductory rate. It was also an insurance policy - I was less likely to break down at what was likely to be some pretty crappy news if Patrick was with me.

We met the surgeon, went for x-rays, bloodwork and met the surgeon again. X-rays showed bad news - the glenoid (socket part of my shoulder) has further eroded and thinned since last x-rays.

Taking a step back - I only had a partial shoulder replacement in November 2011 because there wasn't enough bone there to attach a plastic piece to make a "total" shoulder replacement to my socket (glenoid). So, to find out that the bone is thinner only two years later is really, really bad.

There is also an outside chance of infection which would case all this pain as well, hence the bloodwork and a date with radiology to aspirate cells from my shoulder. The plan being rule out infection, and then we can look at what's left.

I've had dozens of joint injections in various locations over my 22 years with RA. They are slightly uncomfortable, but they offer the benefit of lovely steroids going directly into your joint helping with pain and inflammation. I've never actually had cells pulled out of my joint before, but I assumed the process was somewhat similar.

Oh. Dear. Was I ever wrong. Possibly the most painful medical procedure that I've been awake for to date. And I've had two c-sections. Two large needles, into which six smaller needles were inserted reaching to my shoulder to get cell samples. Stay still. Don't move. Don't scream. And pray that the local anesthetic works well enough. Those are 20 minutes of my life I'm happy to never re-live. It was absolutely horrific. And the best I could do was cry silently and apologize to the radiologist. Apologize, why? I don't know. I'm Canadian. I generally apologize for things that are not my fault.

And cue family vacation the day after this procedure. I didn't feel too bad directly after, but the following couple of days I just fell apart. My shoulder screamed in pain and I didn't bring any good meds (read: narcotics) with me to help. I took the max doses of Tylenol and Ibuprofen, but it wasn't enough to control the pain. Finally, we were in a larger town and I bought Tylenol 1's from the pharmacy, which seemed to help. I'm now a registered narcotics user in the province of Prince Edward Island. Super.

It's been a long time since I've been in this much pain. I'm accustomed to stiffness, swelling, being sore - but actual acute pain? It's not something I'm used to. And narcotics? I've been a prolific anti-arthritic and anti-inflammatory drug user for the past 22 years. And codeine? That scares me. I'm not used to narcotics and I'm not comfortable with them.

I just can't believe I may have to have another surgery. It hasn't even been two years since the last one. How am I not done with all of this yet? I've done my time, clearly.

I've been listening to a lot of new music this summer and attending outdoor concerts. I've seen Macklemore & Ryan Lewis, Imagine Dragons, Tegan & Sara, Jimmy Eat World (twice!), Dixie Chicks, Wheezer (best show) and The Black Keys. It's been a great summer - musically. Right now, Imagine Dragon's "Demons" is speaking to me the strongest. I have demons from the past coming back to haunt me. More surgery. More pain. More of the same. When does it end?