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TOPIC: What I had to give up

What I had to give up 8 years 3 months ago #15265

  • tay_tay
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Heyy! my name is Tayler i am 13 and i was diagnosed with ITP when i was 10. We first went in to the doctors because i had a bunch of bruises, after the appointment we thought everything was fine until the doctor called and we found out my platlets were at 9,000! So we ended up rushing to the hospital. After that i had to give up a bunch! I couldnt play softball or basketball and we ended up selling my dirtbike. I have now had 4 IVIG treatments and a bone marrow assparation. I know i could have it worse but its just hard when you have a family that plays sports and stuff and ur the one not able to do anything. So i was trying to find a way to meet teens like me with ITP, so i could have someone to talk to about it.

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Re: What I had to give up 8 years 3 months ago #15326

  • 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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Wow Tayler, I'm sorry to hear that! There are other ways to get your counts up so that you could keep doing the things you like to do. Don't give up hope and don't stop trying. Some people also have remissions and that could happen to you. Maybe you can get another dirt bike someday. How are your counts?

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Re: What I had to give up 8 years 3 months ago #15335

  • steroidsuck
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Hi Tayler! I was diagnosed with ITP at 15 and i had a platelet count of less than 1,000. I noticed it when i got red spots all over my skin during a volleyball game. When I was first diagnosed with ITP I had to give up volleyball and was unable to play in my state tournaments. IvIg didn't work for me, it gave me aseptic meningitis, not fun, be thankful you don't have that reaction. However, I was put on prednisone for 3 months and am now able to play volleyball again. I am in remission and my counts are up to 300,000. I am now 16. I think I am correct in saying you could still do track and non-contact sports with ITP, its manageable. I'm even doing a 3K in june to raise money for PDSA. I know it seems really hard for you right now, and it is, but it gets easier! If you need to talk or have questions feel free to ask! :)

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Re: What I had to give up 8 years 3 months ago #15362

  • tay_tay
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Hi Sandi
I have been taking this health juice my parents are selling called Mona vie there are differnt kinds and i was taking one called immune we were hoping it would raise my counts but when i got my blood checked Monday they we at 58k and they have been there for almost 8 months now.:( So my parents now have me on another Mona vie drink called Active.
Tayler

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Re: What I had to give up 8 years 3 months ago #15387

  • 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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Well, I don't think it's working very well, but 58k is a safe count for a lot of activities.

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Re: What I had to give up 8 years 2 months ago #15609

  • Angel85
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I agree, 58 is a safe count to do activites, I know it might be hard to speak up, but this is your life, so maybe you need to speak up and talk to your parents about how u feel left out of things and have a talk with the doctors as to what activities they will allow you to do with certain counts. I'm sorry to hear your so down. If they won't let you do physical activities, maybe take up a new activity that it is not as physical. I understand how you feel, but at the same time, your parents believe they are doing what is best for you to protect you.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re: What I had to give up 8 years 2 months ago #15620

  • whatever6430
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Hi there! I am a mom of a 12 year old son. New here today. I left a post on "newly diagnosed". Take a look. Its a long post, but I think you will find out a bit about what my son is going through. I have a feeling maybe you and David will become friends. I know things are hard for him, but you probably know better than me what HE is going through. I will have to show him this message board, and then he could post here. I will have him say "David here". Then you will know if its him or me posting. I am sorry you have to be going through this.... I know its tough.

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Re: What I had to give up 8 years 2 months ago #15834

  • tychinm
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58k is a good number to be able to do physical activity at. I was a sophomore in high school when i was first diagnosed I had a platelet count of 11k. I was a cheerleading fanatic, I did my school cheerleading and all-star cheerleading. When I first learned about ITP my doctor told me there was no way I could do cheerleading. My count has remained around20k-30k ever since. I explained to my doctor that cheerleading was my life and I couldn’t just give it up. He said to my mom who was a wreck “She could get a bruise from tripping walking down the street,” My mom allowed me to go back into cheerleading with one rule, my feet stay on the ground. Just talk to your parents, and try and make a compromise with them. I’m sure it will all work out over time.:)

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