Hate my life!

Hello my Name is Natalie I am now 21.
I found out when I was 12 that I have Itp I can't find where it comes from in my family
I wanted to join the army but I can't pass a medical because of it. I was a chef for awhile and all my doctors harassed me I kept cutting my hands.
I am now a landscape gardener and have been for 6 years and my doctors still give it to me.
I had to give up my sports which I loved so much.
When I get a blood nose bleed in public no one helps I just get stares from people
When I have severe bruising the same thing. Teachers at my school at the time called child services on my parents because they thought they were hitting me. School was very embarrassing from then on once the word spread around I got bullied people saying that I have aids because I am a lesbian.
No one understood me my friends thought it was a joke and use to punch me for the fun and to see how big a bruise would get.
I hate my life and always think what did I do to deserve this?!
I can't go out and celebrate with my friends alcohol is a definet no go I have to always been careful with everything.
My doctors have tried different medications surgery isnt an option neither is transfusions my count is always to low.
I've never met anybody with Itp
I would just like to talk to people and see how you get along with your life.

Hello Natalie, what treatments have you tried and what is your count now?

By the way I have never stopped enjoying myself, going out and drinking alcohol whatever my count. Do you have another reason for not drinking alcohol?

Natalie, ITP is not generally familial. Try not to let it rule you. You are its boss although I admit to wearing jeans and long sleeved T shirts to hide the bruises at times as I get fed up of strangers staring at me and even more fed up of having to explain myself. Anne

Hi Natalie:

Most of us have lead a pretty normal life despite having ITP and I've honestly never seen it affect anyone as much as it is affecting you. It might be a good idea to start reading the experiences of others here to get an idea as to what others go through.

I agree with MrsB - you can let ITP control your life or you can take control of your life. I don't think anyone likes having ITP, but we've all managed to keep our lives fairly normal for the most part.

What are your counts and what treatments have you tried?

I've tried a lot of different medications I can't remember most of them because I was younge and my parents would manage it for me. My counts are usually around 20 if I get up to 30 it's like Christmas come early for me haha..
I've never met or spoken to anybody that has itp so this is a first for me
I always wanted to join the army but being told I can't because of my Itp it broke my heart I was playing soccer as a goal keep and I was about to get my shot to play for my state but kicks to the head and all that my doctors told me I had to give it up. If I drink alcohol and fall over or cut myself I'm in a bit of trouble already had a near death experience with alcohol a couple of years ago and with all the idiot in city's fighting for no reason I wouldn't want to get caught up in that.
I'm in the middle of changing hospitals because my old doctor was fantastic but he went to private medicine and I can't afford that and the doctor I have now is useless he doesn't do anything doesn't tell me my counts nothing so I'm hoping I can find another good reliable doctor.
When I was working if I had my head down for to long my nose would just pour with blood and my boss had to keep taking me to hospital if I cut my hand bad at work same deal..
I try not to let it get to me but sometimes it's hard not to..

If you haven't treated for a long time, there are some new ones that you might want to try. Rituxan can cause remissions for a year or more if a person is responsive, and Promacta or N-Plate can get counts up enough so that you would be able to do more things that you enjoy. See what this new doctor has to say and maybe make some suggestions. You can take charge of this instead of just letting life pass you by.

I don't think anyone, ITP or not, would want to get caught up with idiots in the city. I'm sure there are some quieter places you can go.

If I drink alcohol and fall over or cut myself...

Why would you fall over - do you drink that much?

Also what is your count now?

No I don't drink myself silly I have problems with my back aswell and my legs give me a bit of trouble. I can be sober and still fall but if I have a drink I'm more likely to have a fall.
I don't know what my count is my doctor never returns my calls and when I see him he just says its normal or it's good or bad. That is one reason why I'm changing doctors

My new doctor is so useless I've given up on him. I've asked and tried for months he even changed my appointments for a longer period because he's to busy apparently I've even had an argument telling him to transfer me if he doesn't have time with me. I'm still waiting for a new doctor so I'm stuck with him for hopefully not to much longer.
There's nothing really quiet I just want to be able to go out with friends and do normal stuff with them and have a normal life with them.

Natmcd wrote: There's nothing really quiet I just want to be able to go out with friends and do normal stuff with them and have a normal life with them.

Natalie:

I'm not quite sure what it is you want to do, but there is no reason you shouldn't be able to live your life. When I had counts under 10k, I was still working full-time, running my 3 kids around, Christmas shopping, keeping house, going out with friends to a karaoke bar, attending concerts.....anything I wanted to do. I did usually treat at that time one way or another, but that didn't stop me either.

You should be able to know your exact count every time you get a CBC. I've never heard of a doctor's office withholding that information. A nurse could, and should, give the number to you over the phone. Telling you that "It's good or it's bad" is not good enough. If it's bad, they should discuss a treatment plan for you and if it's good, you should know how good so you can decide your activities. This is unacceptable. Things won't change unless you take charge and make them change. You don't have to hate your life because you have ITP. Most people take a few months to a year to adjust after diagnosis and then they find a way to manage it that works for their lifestyle and life becomes normal again. You have to ask questions and become involved in the management of ITP. It's your life. Your friends should be mature enough now to understand things and not make fun of you anymore. Life can be very different for you if you take the steps we've suggested.

Have you seen a doctor about your legs? It's not normal to just fall over so you should have that checked and find out what's going on. It's not ITP related.

ITP is not a death sentence so you do not have to live as if it were one. It seems to be a good time to make changes and have the kind of life that you seem to want so badly.

Hiya - just wanted to offer a hug. It's horrible to feel down about something you have no control over.

I'm a bit older than you, 34, and diagnosed with itp almost three years ago. At first I lived as if I were made of glass - I worried about everything I ate, drank, did etc. Eventually I admitted that my issue was around my anxiety and feelings about itp, rather thank the itp itself. I did some cognitive behaviour techniques to change my thinking and it had a positive impact on my life.

I started going out with friends, drinking (I only avoid red wine) again, making plans to do the things I want to do. Yes I bruise, yes people stare when I don't stop bleeding. My best example is cutting my leg smashing plates at a Greek restaurant at New Years - yes, after a few drinks lol!! But I had fun - I don't care what other people think.

Safety wise I have medical information in my purse at all times & make sure that at least one person I'm with knows where my info is in case of emergency.

As for other people - most are too self involved to be paying much attention. And those who judge without knowing a persons story should remember that they aren't without their own baggage.

I'm sorry you weren't able to follow the life paths you originally chose. I hope there's something out there for you that will let you feel satisfied that you're leading a life you want.

& like the others have said - don't let itp rule your everyday life.

I'm 29 I was diagnosed at 17 Itp is frustrating but very manageable. With no treatment my count is 5 or under but there are many new medications and it sounds like you need a new doctor. I live a pretty normal life I even just had a baby last year. I also drink. I workout I ride a bike I just make sure I'm careful and won't do certain things if I'm under 15. The way it sounds your doctor is not doing right by you, you should know all your options and i don't think you would feel so overwhelmed, i think we've all been there but that's what this board is for the more you know about Itp and treatments the more relaxed you will be.