Not Fair, Why Me? Feelings of Anxiety

Has anyone had the feeling that its just NOT FAIR that this is happening to them? In a nut shell, I was diagnosed with ITP 15 years ago wiht a count of about 19, as a child approx 15 years old. I got a CBC weeklly for a while and the number went back up and I havent thought about it until this past February when I found unexplained bruising on my legs and went to the Dr. My count was 25. I have been treating with a Hematologist for the past 5 1/2 months and have basically tried everything. Prednisone, Ivig, Spleenectomy, Rituxan, and now they are mentioning Nplate. I am terrified. I ve been on an emotional roller coaster and its causing major anxiety. I was in the hospital about a month ago b/c my numbers dropped below 5. Thats when I got my first dose of Rituxan. Just finished week 4 last week and numbers are at 51. I am so scared that my doctors are not going to find something that will work for me. I dont want to commit to and become a prisoner of Nplate for the rest of my life. Ive read some not so good things about it. Has anyone else or does anyone else feel this way? Do you have any advise as to how I can get through this without having it affect the quality of my life.

Juicy:

Don't look at it as being a prisoner of N-Plate for the rest of your life. Look at it as a temporary thing until something else is found or discovered that will work for you. New treatments are always in the works. N-Plate has done wonders for many people. Plus, it's still early in the game for Rituxan. It could still kick you up higher than you are now. It can take between 4 to 12 weeks.

I never looked at an ITP diagnosis as "why me". I know that bad things happen to people all the time, and I've seen worse things than ITP happen to others. You can take this and make it the worst thing, or you can take it and be content that it's nothing worse. Please don't take this as harsh; I'm just offering another perspective. I pretty much just thought, "why not me"? No one is immune from illness and it can strike any one at any time.

Read as much as you can about ITP, and you may become a bit more comfortable. It can be scary, but you'll find that people can get remissions at any time for no real reason. You'll find that very few people ever die from ITP. If you stick with this group, you'll also find that a lot of people are going through the same emotions and feelings. Everyone tries to help every one else and eventually, nearly everyone gets to a point of acceptance and they regain their quality of life.

I'm not sure if I can help or not but -
I don't think I have ever thought "why me?" However I have had a very difficult time accepting this diagnosis - just like most others, I'm sure - and I am still working on it. I am quickly approaching my year anniversary of being diagnosed. The majority of that year was spent on steroids, which is yucky.

Sometimes when I fixate on it, it feels so overwhelming. I feel hesitant to make any plans and apprehensive about my future. I'm in my early 30's and I just wonder how I am going to handle this for the rest of my life. But it's one day at a time for me during those moments and eventually I maneuver out of that frame of mind. I am hopeful that those thoughts will become fewer and farther between as time continues to pass.

On a different thread, someone said to think of it more as a risk factor than a disease. I have really been thinking about that statement and I hope I remember it when my numbers eventually drop again. I also tried Rituxan and currently have okay counts for the first time since diagnosis without the high dose of steroids. Try to keep a positive attitude and treat your body well because that Rituxan might really work for you.

And if it doesn't, you can consider not treating if you would be comfortable with that. There are a lot of people on these boards with very low counts and from what they contribute, it appears they live cautious, but normal lives.

Stay on these boards. There are so many people here to support you, whether you want to throw a tantrum or share some good news - and you're in a safe zone right now. Try to enjoy it.

Michele, I feel the same way about being hesitant to make any plans. With going on vacation, I feel like Im saying that I will have to make a last minute decision b/c "I have to wait to see what my count is first". I dont want to live like that. Prior to this I used to go away all the time, no questions asked.

Sandi & Michele, I want to thank you, because every little bit helps, and its nice to know that Im not alone and my thoughts, fears and worries are normal. I will stay with this group, I was so happy when I found it.

With all the treatment Ive had, Im hoping one day they will all step up to plate and do what their supposed to do and I have high numbers. But I need to think positive b/c with a count at 51 I have NO symptoms. No brusing No petechia No bleeding. So I should be happy and think positive about those good things.

Juicy, I think most of us have anxiety re our ITP, some try to ignore it, some are more comfortable with it and all of us certainly wish we'd find remission. Also the first thing I recall was "I'm likely to die!" and it was months/years before I stopped worrying about dying.

ITP, to me, is clearly a problem with TMI (to much info) because it's pretty easy to research & understand the disease (this site is amazing), easy to "measure" the severity (didn't even know I had platelets but I sure know my "count" now), relatively easy to visualize (finger in the leaking dike) and easy to understand the pro/cons of an Rx protocol (there are so few Rx options). It generally announces it's arrival without warning when you're already in danger (my 1st count was 24,000 and 2 days later 0) and the process of elimination of other root causes is enough to scare anyone. We're almost relieved it's not one of the other issues. There's also the learning curve that's relatively easy to tackle. Once I understood a platelet wasn't the small salad plate

I was initially overwhelmed trying to understand ALL the information. Add in our desire to "assist" the MD re this rare disease and the inherent risks with any of the Rx protocols and I think it's a perfect storm of high pressure, unknown causes, lack of a specific Rx and lack of a cure.

There is clearly a life with ITP. This place (amazing people hang out here) is a good neighbor as we learn, navigate life with ITP and share our ups & downs. It requires time to digest and define our post-ITP life but it will occur (never as quickly as we'd like).

I pray the peace of our Lord surrounds you as we travel this path. Reach out to us - we've been there and are doing it. The quality of our life is how we live, not how ITP influences our life!

juicy I think you've received just about all the advice needed in dealing with ITP from the others. I think we all can relate to what your saying. In the long run though, it's gonna be alright. Your not alone in your feelings.

Juicy:

51 is a good, safe count. I'd be happy living with that if I had to.

I went on vacation with counts in the 20's and didn't really think much of it. I would have probably still gone if they were lower. Some doctors are okay with things like that and some are not. Also, some people with ITP are comfortable doing things like that with low counts. You can't let it rule your life and you will get to a point where life goes on normally again.

Juicy I know someone who was diagnosed with cancer at age 20, now in remission. This wise person never did ask why me, but instead said why not me.

You have just finished with Rituxan right? Hopefully it hasn't fully kicked in yet and your count will increase even more!

Everyone's been saying "I never had a 'why me' moment"...I cant say the same. I totally have those moments...still...after being diagnosed alomst two year ago.
Maybe Im a bad person for having these 'why me' moments, but it sucks to have a long term disease. And to have to get blood test after blood test. And to be behind in school because youve had to be hospitalized. It totally blows.
But then I do feel super thankful that I just have ITP and not something way worse. There are people who are way worse off than I am. And I just keep saying that to myself everytime I do have a 'why me' moment. But I did just want to say, that hell yeah I have those moments, you're not the only one.

On another note, I have been doing nplate for almost two months, and it's going really well. Im not sure how you've responded to other treatments, but it's totally working for me. Although it is a bit of a bummer to have to go every week, but it way faster than sitting with an IV in your arm for 4-8 hours (depending on what treatment you are getting) you know? So maybe try it.

I hope some of that helps..