Deciding Not to Die

Yes, you read that right. I have decided not to die. What I mean by that statement is that I’ve decided not to accept the negative statistical texts on MCTD. I’m choosing to do what I can to not be one of those statistics, but more importantly, not to act like I already am one. I do have a health update for you, a good one, but first, I want to explain what inspired me to fight back.

I’m big into medical shows, and the ‘weirder’ the medical cases, the more I get sucked in. There’s a show on Discovery Life called Body Bizarre (if you’ve never heard of it or seen it, you need to). The premise of the show is basically as the title says; they feature rare and unusual medical cases. The show features people of all ages and backgrounds, from all over the world. This episode featured a 14-year-old boy from Canada who has a severe case of Epidermolysis Bullosa. Without going into the ins and outs of the condition, it basically causes the person’s skin to be extremely thin, causing them blisters and increasing their risk for skin cancer. The Mayo Clinic website has more depth information on the rare disorder. Ok, anyway, back on track, so I’m watching this poor kid in agonizing pain as he gets ointments put on his wounds. My heart went out to him. I thought “my god, this kid has to be miserable”; how wrong I was. Watching him explain the pain staking rituals he must go through daily and all the precautions he has to take were completely overshadowed by his optimistic tone. One of the last clips (of his portion of the show), he was saying how he knows that his life expectancy is much shorter than he would like, but, he chooses to see how much love and happiness there is around him. Here is this teenage boy who may never be given the chance to get married, or have children, or just be a ‘typical’ teenager, and his outlook on life is admirable.

In that exact moment, I said to myself “you’re a selfish asshole”. For the past two weeks or so I have had enough crying ‘fits’ and pity parties to last me 10 years. I always focus on the things I can’t do because of my disease, rather than looking at the things I can INSPITE of my disease. I constantly think about all the moments in Avas’ life that I’ve convinced myself I’ll miss, instead of being as present as I should be when she’s right next to me. Just because certain studies say that those of us with MCTD have a short ‘life span’ (from time of diagnosis and obviously, varying on degree of severity), doesn’t mean that EVERYONE checks that box. It was a total slap in the face in that moment. I know a big part of my behavior was due to my upcoming Rheumatology follow up and facing the possibility that I may end up on chemotherapy. I had pretty much picked out my own casket and burial plot. Never again. Yes, I may end up a statistic. Yes, I may end up missing those important moments in Avas’ life. But those are outcomes that I have zero control over and zero confirmation of. No more assuming the worst. I’m making the choice to live one day at a time and to take things as they come.

And finally, I had my follow up today with my Rheumatology anddddd my CRP was within normal range! No chemo!! Woohooo. I can stop going to monthly appointments (of course, unless something happens) and follow up with him every three months. I also got my long overdue appointment date for Duke Rheumatology…for November…have I mentioned that I’m not a huge fan of the North Carolina healthcare system? 😊


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