Saturday, June 30, 2012

Long Overdue Update

Yes, it's been a while, but I'm following the lead from my last post, and not apologizing for that.  I said I'd write when I could, and now I finally can ... so I am ... and we've got lots to catch up on!

I'll start with the easier part ... work.  

The past couple of months has been my crazy-busy season, with most weeks including a few 12 (or more) hour days and most weekends filled, too ... so there really was no time to sit and write.  Luckily, I love what I do (ok, I guess it's not really luck since I specifically chose to do this), and every day I get to see the positive impact it has on people who need our support.  Fortunately, though, Relay season is over now, so I can finally start to take a little time for me ... something I really need, now more than ever.

Now for the not-so-easy part ... my health.


Let's start with the good news. After years and years of being dismissed and disregarded by dozens of doctors, I finally have one who really listens to me, understands what I'm going through, and discusses my situation and our options with respect(three doctors, actually). We're beginning to find answers now, too ... they're not exactly great answers, but it's better than having so many "experts" just shrug their shoulders and walk away, or suggest that it's all in my head.

Basically, what it comes down to is that I've got an autoimmune disease ... a few of them, actually, and probably more that are either not yet diagnosed or not yet symptomatic. In a nutshell, what that means is that my immune system can't tell the difference between healthy cells and diseased cells, so it attacks everything. It's systemic, so it affects my entire body, both as a whole and in individual parts. In a lot of ways, the treatment/medications are as scary as the disease itself. I take 8 pills a day, another 8 once a week, and now I give myself an injection every 2 weeks, too.  The side effects pretty much equal the symptoms of the disease, and add increased risk of degeneration, disease, and infection, along with a diminished immune system, so I won't be able to fight the infections that I'm more likely to get.

I know ... it sounds like a lot to take in ... and the truth is ... it is. I've had quite a few pity parties along the way, and will likely have quite a few more. I'm still trying to accept it ... trying to cope. Yes, I said trying ... it isn't working as well as I'd like ... yet. But knowledge is power, so that's my new focus. My goal is to learn all I can, both so that I can understand what is happening to me, and so I can help others understand it, too. Luckily, there's this really cool thing called the internet, which makes it easy to find both information about and people living with autoimmune diseases.

The main thing I'm dealing with right now is Psoriatic Arthritis. When most people hear this, they think of an older or overweight person with a knee or elbow problem, who can simply take a few ibuprofen and feel better.  What they don't realize is that this is an entirely different type of arthritis. It has a different cause, different symptoms, and different treatment options. Though both involve joint pain, autoimmune arthritis is so much more than a joint disease. The International Autoimmune Arthritis Movement was created to raise awareness about this all-important differentiation, and to provide resources and support for anyone affected by this group of diseases.

In addition to all the physical symptoms, there's the emotional devastation that I've got to deal with too.  I have to adjust to all the things I may not be able to do anymore, the things I'll have to do differently, the precautions I have to take. And I have to think about what else the future will bring. Luckily, I found a great support group online, so at least I have people to "talk" to who are going through the same thing.  And I found something that explains what I'm going through and what I need from friends and family better than I could have said it myself.

It's funny ... a few months ago, I realized (and wrote about) how often I use the plural pronoun, talking about what we are going through, not just me. It was comforting to know I'm not alone, but it never fully hit me until last night. All this time, I've been somewhat (though understandably) self-centered. I was hurting ... I was suffering ... I needed people to be there for me, to understand what I was going through. What I didn't fully realize, though, was how much it affected them.

While reading someone else's autoimmune arthritis blog last night, I learned that Rob Thomas (of Matchbox 20) wrote the songs Ever the Same and Her Diamonds for his wife, who suffers from an autoimmune disease. Though I'd heard both songs before, I hadn't really paid attention to the words. With this new perspective, I had to look up the lyrics and watch the videos ... and then it really hit me. I heard it all in hubby's voice, and couldn't stop crying, thinking about what he must be feeling as he watches me in pain. Or my mom ... or, to some extent, anyone else who cares about me.


It's ironic. During this year's Relay season, we made a conscious effort to recognize the caregivers. We know that no cancer patient goes through the journey alone, and that their loved ones suffer with them every step of the way. It wasn't until I watched this video, though, that I realized how my caregivers have been suffering. I wish I could take their pain away, just as they wish they could take mine. Unfortunately, we can't do that ... but at least now we have some understanding (on both sides). We're in this together.

**If you like what you read, tell a friend.  In fact, tell me, too - leave a comment below.  If you don't like it ... well ... I'm all for honesty, but ... please be gentle!