Mindset Matters.

I'd love to know where all of you are with your ITP - Mindset wise.

how do you feel about it? are you angry it happen to you or see how its made a difference in your life?
Tell me your story!

Good question! Not fair that you didn't go first though.

Right now, I am about 10 years into remission. I don't fear ITP coming back because if it does, I'll just deal with it and add it to the list.

I was diagnosed in 1998. I got the phone call while I was at work and at first, I was a bit shook up. All I knew was that I had low platelets and needed to see the same doctor that my Mom saw for cancer years ago. Once I was diagnosed with ITP, I calmed down a bit because my sister had had it 20-some years earlier. Her counts were low and she survived, so I didn't really fear ITP. Also, my doctor was pretty laid back and didn't make a big deal about it, even in single digits. Once I started treatment though (Prednisone), I will admit that I was a wreck. Trying to juggle steroids, a stressful full-time job and three kids was a challenge. I did everything possible to keep things as normal as possible for my kids and it pushed me to the limit.

I was on and off of steroids over the next 5 or 6 years and then decided to try Rituxan. I won't get into the mess of health problems that caused, but I did go into ITP remission after treating with it.

I think most people that get any diagnosis have an initial shock period. You don't think about anything else and it consumes you. In time, you learn to live with it and it doesn't become the main focus any more.

interesting that your sister had it also, seeing that they don't really base ITP to be genetic (from the last time i read about it).
it can definitely be a crazy struggle not only to have to deal with the medication but to add raising 3 kids (i can only imagine)
did you find any growth in who you are now because of going through ITP?

I was diagnosed about 12 years ago, easy to say dealing with it in my teenage years were hard because I'm already going through that awkward/difficult stage of just trying to grow up and take on responsibilities. Played the whole why me, why me, why me thing for a very long time until I started having more control in my life and understanding myself better.
I never really took anything for my platelets on a daily basis, I tried steroids once but they ended up dropping them. In the last few years they have just starting going up on their own. I think it has a lot to do with mindset, and how you live your life!

I was diagnosed in 2004, after a hysterectomy. I had done my 6 weeks of leave, gone back to work and discovered 3 bruises on my belly in the same spot as I had gotten needles when I was in the hospital. I got in touch with my doctor who sent me for blood work. Called my hubby's cell when he got the results and told me I needed to have another blood test. He told me my platelets were low. At that time I had no idea what that was. We went back to his office so he could explain to us what was going on. He told us my platelet count was 47. He put me on a 10 day dose of prednisone and sent me to a hematologist. I have to admit, I have never freaked out about having ITP. Even after having my splenectomy, I did everything normally. I know I should take things a bit more seriously, but..... Sorry, Sandi! Sandi was going into remission the year I joined PDSA.

I did Rituxan in 2011 and have been in remission since.

ThePlateletPrincess wrote: did you find any growth in who you are now because of going through ITP?

I learned not to take life for granted. I learned that bad things happen to good people and no one is immune from that. I never really did the 'why me' thing because I always thought, 'why not me'? I figured I'd much rather take a hit than have my kids take one, so I was glad it was me and not them. I'd seen my Mom go through chemo years before (lymphoma) and she barely let it affect her life, even when she lost all of her hair. I figured if she could do that, I could do this, so I did my best to do the same thing and keep life normal.

I think the progression of the condition has nothing at all to do with mindset. It is just your luck. ITP has little to do with attitude or lifestyle in my opinion and it does sufferers no good to to witter on about mindsets. That just makes people feel guilty which is a bad thing. If you get an out of the blue illness likeITP you just have to keep calm and get on with managing the illness and live life in a way that maximises positive experiences for yourself , your family and friends.

Margaret K - I agree to a large extent. I had to read what you wrote several times to understand what you were saying. I don't think that having a totally positive attitude will cure ITP and you're right, it does leave one feeling guilty that they cannot 'cure' themselves as others have claimed to do. This discussion came up years ago when I was in the middle of it and I refused to accept blame and guilt for not being able to heal myself with my mind.

I do think there is something to the mind-body connection though in some ways. I can see how a negative attitude or anxiety could make things worse. Stress can cause or exacerbate many health problems so turning that around could help. I can see how people could get to a neutral position about ITP; acceptance and letting go of fear will get someone there. As a result of that, the body would be in a much better place.

In my case it worked differently. I'd never heard of ITP when I was diagnosed in 2011, and I was quite concerned. But I never had a platelet crash or required treatment, so I just got used to it. Then I was diagnosed with other things and I watched my mother be diagnosed with and treated for pancreatic cancer. At that point ITP just didn't seem important. I get my platelet counts, shrug at the numbers, and pay attention to the bigger things.

Yes, perspective matters too.

Margaret K - thanks for sharing, I'm curious if you've ever really watched your platelets to see some sort of pattern? I'm not saying if you think good thoughts about your platelets getting better then they automatically will.
I've been diagnosed for 12 years and don't ever take anything unless they're super low so i don't depend on anything but my body.
Before i went away to Europe I gave up driving my car for a few months so I had to ride my bike to work and because i was exercising more, i ate more and slept better. Before i left I got them checked and they were 69,000. At that time they had never been that high on their own and I wouldn't expect that to be by luck in my eyes because when I stopped doing it they were back to a lower level.

Interesting thinking. What was your count before the 69,000?

I am asking this because I got the highest count of 100,000 last Friday(one week after I re-started the martial art on Dec 31). I am on Nplate. The number was going down every week from 70k to 60k and then 50k, right before the exercise.

I will see if I am still that high this Friday (I do weekly blood work on Fridays) as I will be doing same things this week.

It will be a blessing if exercise can boost the platelet number.

Sue.

Forevertwentyone - My platelet counts always stayed around 20,000 - 30,000. That was my usual for me and then they jumped to that which was amazing. About a year and a half ago I took my yoga teacher training and have been teaching yoga and fitness classes. Ever since i started doing that my platelets have been no lower then 60,000 and about a month ago they have finally reached 100,000 and seem to be hanging around there for now.
I don't take any medication so I do believe exercise is a big thing. I teach in Far Infrared and i know thats suppose to help detoxify your body from the inside out also and build your immune system so it could be that helping too!!

I hope your platelets stay up!

ThePlateletPrincess. Thank you for sharing your experience. I am more motivated and encouraged to keep my exercise routine. It was really lousy right before my diagnosis in August 2015 and I became more sedentary after diagnosis until now.

Forevertwentyone - Definitely keep it going, maybe even be mindful of watching where your platelets are when you exercise vs. when you don't and see if there is a big difference. I found there was in mine!

I was diagnosed at 29 had two small children. In the beginning had nightmares because the doctors said I would die if I hit zero. After my first trip to zero I stopped being afraid and decide ITP would be a pain in my butt.

My kids are now grown and this year I will hit 20 years with ITP. My lowest count zero my highest count little over 300,00. My oddest count 1.7 and the most stunned report <5 markedly decrease.

I'm on my 3rd hematologist having fired my 2nd one. Treatments used: Prednisone, IVIG, Winrho, Cyclophosimide, Rituxan.

I had a long remission came out of it and hoping I am back in remission again.


I have had multiple internal bleeds (abdominal/ intestinal) although I have never been given a platelet transfusion. Admitted to hospital only once because a doctor in emergency went into panic even told the ER nurse ( I was out of his scope of practice).


That's my story and I'm sticking to it!

Winnifred - Thanks for sharing! Do you know what caused the internal bleedings? I've never had one myself but I'm just curious if it could happen simply or is it usually from a hard impact that they only happen.

I agree mind set matters. I have a stressful job under normal circumstances. When additional stress from family or financial situations are added I get physically sick.

Only twice was the problem low platelets 2001, 2006, and 2016. But work was exceptionally stressful recently and I had a happy but stressful public speaking engagement and was to do a second one two days after the platelet crash.

I am so thankful that it happened before I got on a plane from IL to CA. It is hard enough to deal with when you have docs you know and trust. I can't imagine having to deal with strangers for this.

I have even been taking insurance proveded stress relief seminars with very little help for my situation. 60 year old. Mobility challenged. Dibetic. Obese for most of my life. Needless to say lots of health issues. The advice I got eat healthy, lose weight, exercise. So along comes a platelet crash and now it is go no where and be carefull. Is that not irony?

So instead of exercise, I am meditating. ITP stopped my work stress cold since I do software support basically I think for a living which is impossible for me on steroids.

Even though I have been here before it was so unexpected after nearly 10 year remission, I feel like I am back to the beginning. I am relearning and learning new aspects of the disease.

I hope for another remission to normal but will live with low counts the best I can. I also agree symptoms not numbers are more important.

I appreciate all the posts on the site. I am finding it easier to get caught up on the treatment changes in the past ten years.