Well it’s been an interesting 6 days… in the past I’ve just gone from being fine (platelets 300+) to not being fine (platelets less than 5).
This time I’ve been slowly watching my platelets decline. I’ve been on 80mg of Prednisone for the past 6 days and my platelets are going in the wrong direction. Something about this disease can mess with me mentally. I mean, I’m doing all the things… I’ve changed my diet completely, I’ve quit drinking, I’ve started exercising, I do daily gratitudes… the only thing I’m not doing is managing my stress effectively. I know I know… stress can cause chaos but I can’t imagine that that ONE thing is the culprit. I mean, what in the world is causing this?!
I almost think it’s a little worse to watch my counts decline slowly instead of them dropping quickly because when they drop quickly, you go in, get treatment, feel better and be on your way. When they drop slowly, you’re over analyzing every move, anxiously waiting for results, practically living in a bubble for fear of getting hurt, I mean - zero fun here people!
ITP is a serious disease and there’s many people who have it much worse than I do, however, for me and my body, it’s pretty scary. I try to always find the bright side, to bring in some humor, make fun of the rarety but truth is - some days it’s just too much.
When you pull up the test results to see treatment is NOT working, a feeling of defeat floods my body. The have me on these high dose steroids that come with a buttload of side effects and it’s not even helping! So, I feel like a crazy person for nothing! Zero. Zip. Zelch. Nada.
I‘ve also been on the journey of radical acceptance and feel like I’m failing at that as well. I want to be this free spirit that seizes the day and doesn’t let this damn illness control me. I want to live in the moment and enjoy life’s inevitable speed humps but at times like this, I’m stopped dead in my tracks. Often times people refer to ITP as a rollercoaster and it’s never been more true. Between the ups and downs of your platelet count and the highs and lows of your emotions - there’s no better description than a rollercoaster.
Monday morning I’ll get my bloodwork done nice and early so that I can finally decide what to do. If my platelets drop any more I’ll take myself in for more treatment.
Day 5 of 80mg of prednisone. Thankful for Snapchat filters to make me look much better than I feel!
It’s been emotional for me this round. Watching my platelets decrease day by day is much harder than just dropping suddenly. Getting those test results that treatment isn’t working, hurts. On this day I felt very defeated. It’s not always rainbows and sunshine.
I try not to wallow too long… finding the humor is absolutely essential on this journey… this shirt came in just in time for my bloodwork appointment. Funny, right?!
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