I had a draft half written the other day – the day after Valentines day…
It basically said that my “Spin Out” feeling has been identified as a fast, unexpected and unexplained drop in blood pressure… but its obviously not killing me – no call from the IBD department telling me to come in. I would say its the medication, but until last night I had almost convinced myself that I could live with it. I also wrote about my beautiful violets… I got a bunch of flowers (first time ever) from my partner on Valentines Day. I was the only one in the office to get something… and even though I was struggling with my health – I felt pretty special.
So what happened last night? I sat quietly on the couch… knowing I was on the cusp of a Bowel Obstruction – it may have been a year since the last one, but its an unmistakable feeling that you certainly don’t forget with time. I reluctantly got my Corticosteriords out and downed one before I had a rather boring bowel of soup. I felt like hell – but it didn’t get to the writhing agony it used to. My methods of coping have stopped it from progressing to the stage it used to get to. I mean thats good and all – but it doesn’t change the fact the clock reset last night… and the fact the Mercaptopurine isn’t working (and making me feel shit in other ways for good measure).
I totally and completely fell apart in bed last night as the reality of my situation dawned on me. On Thursday I will be put on Humira or Remicade – both injectable, biological treatments usually reserved for sever cases of Crohn’s. I am being put onto it simply because nothing else is working.
I have done a lot of reading on both treatments and while the stories of people finding success on the medication is encouraging… the statistics relating to side effects and incidences of critical illness later in life scare the hell out of me. I feel like… I am exchanging feeling okay for the next few years for something a lot darker in perhaps my 40’s or 50’s. I know there is no certainty that will end up with Lymphoma – but the words that accompanied it like inoperable and fatal just stick in my mind.
I suppose that a few months after my diagnosis I decided that I didn’t want to die… that I had a lot left to do. My mind hasn’t changed. I still feel as if I have a lot left to do… and to give and the thought of me a) not being able to physically do it or b) dying from a complication relating to a drug thats meant to help me, scares me….
I am trying to prepare myself mentally as best I can for Thursday – Stocker is trying to get the time off to come in as well… I get the feeling though all my preparation will be in vein. I don’t think its possible to get ready to hear that your choices are to suffer from fully active Crohn’s or take something that may dramatically reduce your life expectancy. Surely in 2012 we shouldn’t still be giving people this choice… surely by now, with how ingenious we are, we should have a better course of action?