ITP VIDEO RESOURCES

I’m Tammy and I live in Washington State, and I’m a teacher, and I have had ITP for 15 years now.

For people who don’t know, ITP stands for chronic immune thrombocytopenia, and it’s where your body decides your platelets aren’t the right kind of platelet, and it destroys them. And so, it attacks your body, and then you can’t clot, which means when you get a cut, then it won’t stop bleeding.

When your platelets drop like that, you get tired, usually. Most people actually talk about fatigue being an issue. You end up finding bruises, or some people have bloody noses a lot, or blood blisters in their mouth. But when you first get it, it’s pretty scary, because you don’t feel good to a certain extent, but on the outside, for the most part, you look okay, so people are kind of like, “Well, you look okay, I mean, how can you be sick?” And we get that a lot, actually.

Everybody has been so grateful that I’ve been sharing my story with them, because then they understand, and they’ve all been so helpful, they’ll ask if I need anything. If my counts drop, they know that I can’t go out for my hikes, maybe even can’t even go for a walk. There were times I couldn’t even go outside for a walk, they were too low, or maybe I wasn’t feeling good, and I’d have to cancel last minute, and they’re all like, “That’s great, no big deal.” And we just schedule another time, and they always knew it was tentative, and it just made me feel better knowing that they understood what was happening.

Before I was diagnosed with ITP, I used to be able to get out and play softball, or go out on the motorcycle, things like that that you can do easily, most people can do easily. But with having ITP, it made a little more difficult, because falling or getting hit with something makes it dangerous.

So, I have made some changes, instead of hitting a softball, I hit a golf ball, and instead of being on the motorcycle, now that my counts have been up and down, I now go out in the Jeep, and it’s a little safer place to be, but I still get out, and I get to still go out and have fun with friends, and everybody’s been very helpful with that too. When I first started learning more about platelet counts, and what was safe at certain numbers, I actually made a list of things I could do if I’m at this level, or at this level, or at this level, because when you hit the lower levels… I didn’t have a whole lot in my life that I could do at that point. And so, I found things that I could do at that point saying, “Okay…” And changing my mindset of saying, “Okay, what can I do at these counts?” Versus thinking about what I couldn’t do. I had my list of 30 or below, or 50 to 30, and it made me think in a different way, so that I didn’t have to think all the negative, and turn it more to a positive. There’s so much now, with changing my mindset, thinking about what I can do, versus what I can’t do.