Platelet Disorder Support Association

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frusrating!

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13 years 10 months ago #20245 by brittany
frusrating! was created by brittany
so tired of having this ITP. just hate to think i have to do this routne for possibly the rest of my life, 3 years has been long enough... how do other people make this a part of their life? I have a 2year old and a job-- so treatments and appointments are such a pain! Its hard enough finding babysitters while i am at work but then trying to find a sitter while Im at all these treatments/appointments/weekly blood draws. (cant hold a crazy toddler when getting blood drawn and treatments!)

For example last week my platelets were 39 so I thought "oh i can get another week before they drop too low, because of work/babysitter"... and i get a call my platelets are 17. So I had to leave work and you know people get all cranky when they have to cover for you.....but I dont have a choice.... Its just so frustrating.

>< just complaining ya know
  • 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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13 years 10 months ago #20252 by Sandi
Replied by Sandi on topic Re: frusrating!
What treatments have you tried? There are a few that can cause remission.
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13 years 10 months ago #20263 by Dean
Replied by Dean on topic Re: frusrating!
ITP is quite a "Rollercoaster" ride. Understand your feelings of being tired of it!! It does get easier (mentally) and you just learn to roll with the Punches ITP delivers. Co-workers need a slap upside the head!! It is not like you chose to get ITP so you can leave work. Mabey they need to do some reading up on ITP!!!! May want to consider Rituxan.
Feel free to vent anytime. We understand.
  • 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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13 years 10 months ago #20283 by Sandi
Replied by Sandi on topic Re: frusrating!
Brittany - maybe you could schedule appointments and blood draws at the end of the day or as early as possible in the morning? I found that I was barely missing any work when I did that. I went for blood draws during my lunch hour...even had Win-Rho treatments during lunch time. I would only end up missing a half an hour to an hour doing things that way.
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13 years 10 months ago #20329 by brittany
Replied by brittany on topic Re: frusrating!
ive done steroids, ivig, rituxan... now ive been doing nplate injections. yes the injections are quick but the drive and sitting in waiting rooms just take up time. I know it has to be done but its just annoying...
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13 years 10 months ago #20332 by Ann
Replied by Ann on topic Re: frusrating!
Maybe now the regulations for Nplate have been relaxed they will let people self inject. Fewer hospital visits has to be better.
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13 years 10 months ago #20334 by brittany
Replied by brittany on topic Re: frusrating!
it would be wonderful if we could pick nplate up at pharm and inject ourselves!
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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