is there anyone from wyoming

I've been diagnosed for aprox 9 months now and it seems being in wy there arnt much options for support or info .some days it seems like im in the middle of the ocean with no land in site i've been thru predizone ,rutuxin ,and danazol all work for just a few weeks then started dropping quickly . so at this point im going thru with having my spleen removed as soon as in can ..im just wondering how do you deal with the disapiontment every cbc you get done ..ive been dealing with alot of depression and now take meds to help..just hoping that spleenectomy works for me but just have doubts.any suggestions on how to keep positive attitude ...its hard for me because ive never had any health issue in my life till now .im 39 i work constuction in shape and only went to the dr with only injuries..lol so this has been a huge shock to my physical and mental health ..most people cant even tell im sick and have never heard of this ..so what can i do

Matte:

The only way I can think of to help you out here is to give it to you straight. This is how you keep a positive attitude.

I never considered myself sick when I was diagnosed with ITP. I had an autoimmune disorder, yes, but sick? No....sick people are in bed or debilitated in some way. I wasn't.

If you hang around here long enough, you find out that most people eventually stop obsessing over counts, and concentrate on symptoms instead. Many people with ITP have learned to settle for safe counts (over 30k) instead of striving for normal. You might need higher counts with your job since you can sustain injuries (I only had to worry about paper cuts), but I'm sure your doctor can give you a safer number that suits your needs, like 50k. It might not have to be normal.

As you are probably aware, splenectomy is just another treatment. It may or may not last. Many times, the liver takes over the function of the platelet destruction and you can't do anything about that. It comes with it's own various risks.

When you take a look at all of the possible medical disorders there are, it can sure change your perspective on just how life-altering ITP isn't. Yes, it's a pain in the butt and yes, it rules your life for a while, but you won't be in for years of suffering like ALS or Parkinsons.

Bad things happen to good people all the time. It stinks. Just like you, ITP hit most of us normally healthy people out of the blue. But I can tell you that there are some ITP people with low counts that also have to take blood thinners because they also have a clotting disorder. Juggling that can be a real challenge!

My world shook too when I was first diagnosed. I even knew what it was because my sister had had it years before. It is scary and the treatments can be nasty. Not fun. But after coming here and reading the stories of others, I realized that I was not the saddest story here and things could always be much worse.

This is worth reading:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Hey Matte,

I just got diagnosed on 12/28 and my platelets haven't been above 12 since. The prednisone makes no difference and the hgiv only gives a slight bump. I am unwilling to have my spleen removed or take rituxan so have chosen a natural route. I am learning Transcendental Meditation and have identified a homeopath locally who has had success working with ITP. I have talked to a woman today who had that success with this homeopath without taking very many drugs. I am becoming more and more comfortable with this being something I now need to live with and be responsible for but something that doesn't have to limit my life. I suggest reading and learning about all possible ways to treat this and make centered, thoughtful decisions weighing all the pros and cons.

Light and Love,
Patti

plustig wrote: I am becoming more and more comfortable with this being something I now need to live with and be responsible for but something that doesn't have to limit my life.

Patti - well put! Good for you!

Matte,
Sorry not from Wyoming or even close to there but I think the thing with ITP is we live in a hurry up sort of world and everyone expects things to get better quickly and there should be an answer for everything but this is not always true, finding your thing for ITP may take time and being comfortable with this condition also takes time.

I think Sandi hit it on the head when she said your not sick just have a condition that you need to keep an eye on, sure could have a lot worse, it is a shock and it is sort of something that you don't expect to happen to yourself but it does get easier as time goes by, just keep telling yourself that you are going to be ok, you are not alone, I actually use my ITP to educate people about blood donation and auto immune problems, platelet donation and show them that I am bigger then this condition, I rule it, not the other way around!

i thank all of your info from all of you i appreciate the uplift more then you know it is amazing how such few words can say so much ..as of today i am having a spleenectomy tuesday and hoping for the best ..i feel releaved and have alot better attitude already.. i think with all the activities and work that i do it will let feel a bit more at ease day to day ..i will post how everything went and thank you agian
take care and god bless
Matt

Matte42000 I'm not from Wyoming, I'm from south of the border [Colorado ] and was diagnosed in 1989.

Good luck next week, hope that splenectomy does the trick and your count hits the normal range and stays there!

Good luck, Matte. Please let us know how it goes!