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You've got ITP - what is back to normal?? 6 years 5 months ago #54797

  • John
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  • Posts: 148
  • Thank you received: 32
I've had ITP for almost 30 years. Diagnosed in the dark days (no one knew anything back then), no internet, just a vacuum of knowledge - other than hematologists - who didn't know much then either. Had my spleen removed to avoid long term prednisone use (and yes it worked for a while). Want that SPLEEN back but its too late. Been through hell and back and I KNOW that there are thousands before me and with me on this. So now I am totally normal. How can this be?? I have ITP or do I???

My definition of what is back to normal? (ie. you've had ITP and now you feel normal): You no longer think about it. You are physical once again without limits. You are you. Nothing to hold you down. You are not even conscious of what ITP is?? This is probably the final stage.

There are natural ways (ie. beyond drug treatments) to deal with autoimmune conditions like ITP. I won't call it a disease because that seems like something that is not treatable. You just have to figure it out and unfortunately the medical community is not helpful enough (which means it is up to you to take charge). Each person is different and the condition can present variations for everyone. Putting that out there. So humble and grateful.

All the best,
cheers,
john
The following user(s) said Thank You: kiwi99, Oliver091117

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You've got ITP - what is back to normal?? 6 years 5 months ago #54798

  • John
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  • Posts: 148
  • Thank you received: 32
I used to take long walks and listen to Coldplay years ago. I saw this video recently and thought it a great metaphor for my ITP. Take from it what you want.

www.youtube.com/watch?v=RB-RcX5DS5A
The following user(s) said Thank You: Oliver091117

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You've got ITP - what is back to normal?? 6 years 5 months ago #54805

  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
  • Posts: 454
  • Thank you received: 67
Very powerful. Thanks for sharing.

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