approaching the 3 year mark of dealing with ITP

Hi, My name is Rebekah and i been coping with ITP for 3 years on June 15th. I has not been an easy ride at all, but i have got though it no matter if i had suport or not. I was only 15 when i was diagnosed. It turned my world upside down and it is stil not in the place as before it happened. I just wanted to get advice from all survivors as you or they have approached a mark. Does it get easier as time goes by or does it just get harder?

I think that answer would depend on a persons response to different treatments over time. For me though, it got easier. I stopped being afraid of low counts and learned to go with the flow. I learned that ITP was not the end of the world and I could live a fairly normal life with it. Things could be worse.

For me, the emotional side has always been easy to cope with. What I find difficult is trying to fit medical appointments and blood tests in with work. It was fine in my last job because of the nature of the work, as long as I got the work done it didn't matter that I was late in some days after blood tests. This year in a different job it's been far more difficult and now this contract is coming to an end it's going to be difficult again in another job, if I can find one.

It was quite difficult for me at first, 8 years ago. Prednisone only worked as long as I was on it. Two Platelet transfussions did not work. Two Rituxin treatments. First treatment hung on for 16 months, second is going on over 21/2 years! It has gotton easier over the years, you just get used to the ups and downs and roll with it. I have been ranging anywhere from 160-200k for the past 21/2 years. The thought of coming out of remission is always in the back of my mind, but I do not let it bother me. I will ride that Rollercoaster, if it should call me aboard again. The best thing you can do for yourself, is to stay positive on this Rollercoaster ride.

For myself it has been a little tough but I feel just like "Dean" it is like a roller coaster. Some days are good others are really tough. I have had been newly diagnosted(?) but I have been suffering for 9 years with this and it has been roller coaster. I totally agree with staying positive and getting the facts on your body and having a strong support team to get you threw the tough times.