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Having ITP and hate having to tell ppl about it

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12 years 6 months ago #19106 by charmed147
My name is Jamie and I'm 20 years old and have ITP since I was 10 years old. Everywheres I go I have to be limited to what I can and can't do.And everytime I meet someone or with friends I need to explain why I can't do certain things. I just want to be able to have some friends that have ITP or had it to understand what I'm going thru and just to talk to. I have a fb www.facebook.com/profile.php?id=640598241 if anyone would like to talk about it and if your going thru anything I'm here to talk.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 6 months ago #19124 by Sandi
Jamie:

How are your counts and have you ever treated? What can't you do?

I've never found it necessary to tell anyone about ITP if I didn't want to (except for my employer when I had to miss work for treatments). Like you, I prefer to keep my medical issues to myself.

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8 years 1 month ago #53469 by ALXNDR
Just explain it to people and hang around those who understand. Thats what I did at least.

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8 years 1 month ago #53471 by Aoi
I find this to be a tricky issue. I have a separate disorder that prevents me from doing a lot of what most people can do. I generally don't say much about it, and just go about finding things I can do. People close to me do know, and even then I have to remind them of my limitations from time to time. Like Sandi I'm curious to know how ITP is limiting you? I don't find it has much impact on my life except for the frequent blood draw to check platelet counts. Maybe my other limitations already keep me away from anything that would involve platelets.

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8 years 1 month ago #53478 by ALXNDR
My numbers, 24000, prevent me from playing any contact sports or anything like that.

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8 years 1 month ago #53538 by Aoi
Due to a separate problem, I had to abandon virtually all sports years ago. I know it's hard to lose something you enjoy or want to do with other people, but there are lots of other possibilities. The translation to other activities requires some trial and error before you find one you really enjoy, but it's worth the effort. I use Meetup.com, library notice boards, and local schools to find groups that are doing things that sound appealing. This has led to a lot of interesting and enjoyable activities, none of which involve the things I can't do.

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7 years 8 months ago #55191 by lexi
Im new to itp and im wondering about ammusement parks? what can you do

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 8 months ago #55205 by Sandi
It depends on counts. Usually you can ride anything with counts over 50k but it's best to check with your doctor.

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7 years 8 months ago #55230 by lexi
ok. my brothers wanted me to ride rides with them at our local fair but i was at 3 so good to know.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 8 months ago #55238 by Sandi
Riding at 3k would have been a bad idea. :huh:

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