It never gets easier… it never gets less scary… it always hits different every single time. I had perfect blood work for nearly 12 weeks and then SURPRISE! 😱 Like that part on the rollercoaster, when you’re cruising around the track and then suddenly the rollercoaster drops when you least expect it! Your heart is in your throat and you’re probably saying ‘holy shit‘ several times without thinking about the 10 year old kid behind you 🤦🏻♀️🎢
With each relapse comes awareness for me. Something new I hadn’t noticed before or something different I may feel. I find myself getting in tune with my body more and more. This time I felt it. I was feeling exhausted and just overall unwell. I started to feel the exhaustion about a week ago and my blood test showed that I had a 120K decrease from the week before. This is not normal. Although I was still in the “safe” zone, it was a dramatic decrease. Paired with the exhaustion I just didn’t feel right about it. Last week I went and did 3 CBC tests, each one declining by about 40K. Going into the weekend I was wiped out and drained. 😴
I typically don’t nap during the day and I rarely ever sleep past 6:30am, regardless. However, I slept a TON this past weekend and did ZERO of my honey do’s.
Come Monday (today), I was at the lab nice and early to see what the damage was. Within the hour my results came in and I was at 80K. If you’ve read any of my other posts - you know that a safe range is between 150K - 400K. While 80 is still better than my previous relapses (2K and 5k), it’s still not great. And if they are declining daily, it’s a safe assumption they aren’t going to start going up on their own. My doctors personal preference is to treat me anytime I get below 100K and I’m good with that 🙌🏻
There is something about that initial moment though… when you find out your levels are not where they belong. It scares the hell out of me, to be honest, every single time. I don’t know if it’s the thought of what if… like what if I hurt myself and bleed out and die?! Or maybe it’s the frustration of disruption… changing my routine to either be hospitalized or on steroids. Whatever it may be, it doesn’t get easier. I will say I bounce back mentally better each time. Within a day or two I’ve shaken off the initial shock and can just accept and move on.
There are people who have ITP much worse than me. People who never even see their counts hit 80K. People who have to sit through long transfusions daily. I don’t know if I’d be able to handle a lot of what others go through. I just know that my ITP, is hard for me. I struggle with it more mentally and emotionally than I’d like to admit. I know that stress and worry aren’t good for anyone but especially for me because it does effect your platelets but here I am worrying. I try to worry less each time but like I said. It’s freaking scary dude!
I’m certainly a work in progress. Although I don’t look “sick” my body is going through some heavy stuff. Some heavy stuff that my mind is still working through. All the while remaining positive and hopeful for a better tomorrow.
I’m less than thrilled to get put on the steroids.. between the moon face, weight gain and lack of sleep - it’s not something I prefer BUT it beats being dead! 😝😂
Stay hopeful my friends!
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