The subject of this post is the last I want to write about but it’s my life right now. And I know that for a number of my family, friends and even a number of acquaintances, this space is a way for them to keep up with what’s genuinely going on with me. I don’t always project what’s really happening to me because if I did that I’d be a broken down, miserable, sickly, and generally depressing human being to be around.
And that’s not me.
The truth is, I do feel broken. I’m coming up on the ten year anniversary of when the Cyclic Vomiting Syndrome made its grand entrance into my life and tried to kill me. After nearly ten years of wrestling a chronic illness I feel like I’ve seriously mastered the art of it. Every day is a battle, but I’ve learned how to push myself and function around it.
The toll the CVS takes on my body cycles; and as such, there are moments I simply don’t have the endurance to deal with it. I’m human and I have my breaking points. But those instances of complete cessation invariably have a short shelf life and I’m awesome at pulling myself out of it.
Just when I was at a point in my life that I had majorly Jedi mastered my illness and I was finally feeling in control of my body again, the back issues dug in. The affect has been so physically and emotionally crippling in a way for which I could have never prepared myself. Where I’d mastered and remastered and straight up owned the art of managing what happens to my body internally, I’ve never lived with a constant physical pain like this before. Perhaps had the back problems happened to me as a fully functioning, healthy human being, I’d be better equipped to tackle it and fight it with the same tenacity that I approach my illness. But because the back problems and physical pain are simply another extremely heavy compound on top of an already worn down and abused body, I’m collapsing. And that right there is one of the hardest things for me to admit. I don’t collapse, I kick ass. The last ten years I’ve lived my life as if I’m perpetually giving a giant finger to the Cyclic Vomiting Syndrome. My motto has been something in the realm of, “Fuck that, I’m gonna have the funnest, kick-assest life ever. Illness be damned.”
Where my motto has not changed, I no longer have the tools in reserve to force that motto out. My brain and my will are still dead set on “Fight, fight, fight, one step at a time, one minute of each day at a time, fight, fight, function, fight, ooh look a puppy!” But no matter how Stonewall Jackson I am about the situation my body just wont. back. me. up. My spirit (and consequently my endurance) has been severely compacted. Just this morning I had to sit on the kitchen floor, leaning against the cabinets while I waited for my coffee to brew because I simply didn’t have the strength to hold myself up. Little moments like that are abrasively humbling. And when you come to the realization that those little moments are becoming more frequent than “once in a blue moon,” it’s a hard pill to swallow. Especially for me. I’m the person who despite my piece of shit body, fights for a ridiculously fun and fully active lifestyle no matter what. I always find some way to immerse myself in the positive, in what makes me happy instead of focusing on my POS body. I don’t exactly know how to handle the instance of that focus being taken away as well. When what little strength you had to cope and deal and remain happy is actively drained from you without your permission or control. I’m not saying I’m unhappy. I’m just… too exhausted and physically incapable of actively emitting happiness on my own. All I have the strength for right now is keeping my body somewhat functioning. The only reason I still smile and laugh is because of the incredible people, love, and support I have in my life. For that, I’ll be eternally grateful.
And with that said: I had a follow up appointment with my surgeon/pain management specialist last Thursday. The second injection in my SI Joint didn’t take. I’m left with three new options. One is a potential bone deformity for which I had X-Rays on Thursday to confirm. If I have the bone deformity then, Yay! I’ll have an obvious arrow pointed at the problem and I can have an insurance covered surgery to solve it. If I don’t have the bone deformity, then the next step is to try a third and final injection in my L5 Facet Joint. It’s the last of the three “trial and error” injection points to see if we can get me pain free for a while. If the last injection doesn’t take then my final option is a form of Rhizotomy. Which is a procedure where in a metal prod is inserted into my back and it burns off the nerves around the source of my pain. Apparently this is a rather painful procedure from which to recover and insurance won’t cover it because the procedure is considered experimental. Considering my options, I’m praying my doctor calls with the news that I have a bone deformity. In the mean time, I’m just gonna keep doing what I do and hope that
ooh look a puppy!