Hi there,
I almost didn't write this post but then I thought about myself when I was diagnosed. I was stuck in a hospital wit a 5K platelet count, on 80mg of prednisone (which was messing with me emotionally), hooked up to an IV, I was on the Oncology floor, getting CAT scans, asked if I wanted to talk to a priest, etc. It all hit me so fast, and I was REALLY scared.
So now, 8 months later, if I could read what I am about to write, I think I would have been really encouraged and if I can encourage someone here who's a little freaked out, then I am happy to contribute to that.
I'm an adult male, 34 who was diagnosed with ITP in March. I know that it's most likely chronic in adults which doesn't mean you're gonna die, but it could mean a long, frustrating road.
Yesterday, my hemotologist met with me and told me I don't need to see him again. I tapered off my prednisone that was started upon my diagnosis and turned out I didn't need any further treatment. My last count was 216K, about a month ago (after several months of no treatment).
Now I'm not going to tell you that I know the solution here. Everyone's different. But after hearing about all of the side effects of prednisone, I took it upon myself to challenge my mental capacity and at least TRY to overcome the side effects, if at all possible. I didn't like the sound of "moon face" and read some horror stories about weight gain, depression and all of that. So here's what I did:
1. I put myself on a diet. ASAP. I ate 6 SMALL meals every day: egg whites, vegetables, fish, lots of water, multivitamins, etc. I cut out, cold turkey: ALL fast food, sodas, caffiene, anything with artificial sweeteners, processed foods, and even red meat. Currently I eat red meat on occasion, but everything else is still no longer a part of my life. Haven't had fast food or any of that other stuff in 8 months.
2. I worked out: Weights on Mon's and Fri's and running (about 45m to 90m) every Tues, Wed, Thurs and Sat. Sundays I rest.
It was REALLY hard for the first couple of weeks. But then it's been very easy.
Did this cure me? I have no idea. Most "experts" will probably say "no". But I came out of it and I am happy to assume that my healthy lifestyle had something to do with it. Even if it's not the case.
I think fast food can make you feel depressed and more depressed as you get fatter. You are what you eat. Exercise and fresh air will also naturally keep you alert and happy and positive.
I set some goals and ran some races, including the Vail Pass Half Marathon.
I turned my time with ITP into a positive experience, and whether or not it's a cure, a healthier lifestyle will help your head, and that counts for a lot.
I am self employed, so I don't have a lot of time in the day. Every day is LITERALLY a race against the clock for me. But I made this a priority. I sacrificed a few things to make it work.
Anyway, I just want to encourage everyone to make positive lifestyle changes and at a minimum, I am sure you will be happier through this whole experience. Set some goals! They are a great distraction to the annoying experience of having ITP.
Well wishes to everyone here. I know, it is so frustrating. I am not discounting that ITP could come back and get me sometime down the road. I almost expect that it will. But mind over matter, I feel I can mentally handle anything. So can you!
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