Confused and stressed out.

Posey, thank you for replying. I appreciate your insight. I think the hardest part thus far has been just what you were saying; apparentry have had ITP my whole life but never had any signs so no doctor ever showed concern. But I agree, it is not leukemia or lupus, so I have been forced to look at it glass half full. Just afraid to do anything that could exacerbate my symptoms, like run and/or have a beer (2 of my hobbies; I am a runner and a craft beer guy). Thoughts?

There is absolutely no evidence to show that running or drinking a few beers will cause counts to go down. Don't stop doing the things that you enjoy! Something as simple as a cold could knock counts down. Some things are out of your control. If you think you've had ITP for a long time, why would running or drinking beer suddenly change anything? Even if counts do drop, chances are 99% in your favor that you will not die. ITP is not a death sentence, even with low counts. We are all living proof that life goes on with ITP; nothing changes except fitting treatments and side effects into a busy life.

With counts of 6k I was still working every day, I was running around Christmas shopping and I was driving my three active kids everywhere they needed to go. I started taking Prednisone and still did all of those things. I had Rituxan infusions and still did all of those things. Not once did I fear dying from ITP. I was being monitored, I knew what to look for and I treated when necessary. I won't pretend that it was easy, but I got through it. You would too.

Don't stop doing the things that keep you sane like running and beer! I was diagnosed after running a 15k with my best time ever. Staying active puts a smile on my face. ITP is not the end, it is just a bump on the journey.

Hi Kevin,
I know how confusing and alarming a diagnosis can be until you learn the facts and sometimes it can take awhile to get to a calm state again. All the advice you are getting here is very good and I would just add that if you seem to be unable to not worry so much, that can be to your detriment. After dealing with my illness for over four years, I finally found a great therapist who helped me immensely. I came to understand the role stress played in my illness, when my husband raged my numbers dropped sometimes by 50%. I had to learn how to "be a duck" and let things roll off my back, how to keep myself safe, how to not roll in thorns, and how to live and let live. It seems to be working I am in remission and thanks to all I've learned life in general is so much better.

Best of luck to you.