Living with ITP

I am having a bit of a difficult time lately living with ITP. I'm 32 years old and have been living with ITP now for 14 yrs. I went to a very good and well known Hematologist in NYC for many years, did some trials of Rituxan which helped me slightly, though my doctor would say not enough to call it a remission. I luckily took my somewhat healthy mid 20's and traveled and lived abroad until my counts fell to 7k. I returned here, leaving behind a lot, but I realized I also needed the emotional support of my family and proper medical care. I luckily do have both of those right now, though also have issues with insurance and that creates a whole other headache. But something that is bothering me is at times it seems like my friends really don't understand what I deal with, and sometimes not sensitive to what I am feeling. I never really come out and say how much I get tired of dealing with this...I know it sounds self-centered, but I'm trying to put things in perspective. I try an live a healthy lifestyle, eat well, yoga, meditate, exercise, create, but sometimes it all just weighs down on my shoulders. Over the years I really have gotten to know my body and understand my feelings but sometimes I need someone who feels what I do to relate to, I guess that is the lack I feel.
What are ways others find helpful in living a full and social life with ITP?

You are not alone in suffering from lack of understanding from family and friends regarding you are going through. My case of ITP is/was somewhat unusual, after my splenectomy in 1974 I have lived a mostly normal life. It has only been in the last 10 years or so that the exhaustion and muscle weakness has been become more of a problem. The only thing I can say is, you are the one who knows what you can do and what you cannot do, do not let public opinion interfere with your efforts to take care of yourself.

Most of my friends do not understand this condition. With one friend in particular I have had to learn not to agree to any "dates" as he does not understand that I do not have much control over whether or not I will be sick at any given time and this means that I do not see him anymore. The stress of not having my physical limitations taken seriously was just too much and he had to go.

Funny thing is, people always tell me how healthy I look. Well, heck sleeping 10 hours a day should do it if nothing else will, but I know that no one really wants to hear the truth about this.

Glad to be here where all this is understood and where there are no aspersions when it comes to my evaluation of my own health. (Not that it doesn't hurt to be misunderstood--tired of being labeled as depressed and a hypochondriac, to be honest.)

I don't post often because what i usually have to say is not that welcome around here. But whenever i see stories like yours i can't help myself. So, here i go again. I'm a father of a now 18 year old girl who started this ITP(and worse than itp)nightmare when she was 12 years old. Fast forward six years later she takes no medication and her last platelets count was 182k. Here are a few ideas: gut permeability, detox, adrenal issues, food allergies, vitamin D levels ( should be 80 and up). Some useful and/or possible solutions. immune madulators like beta glucans(do a search on these), 5000 iu of vitamin d per day, probiotics, mushroom supplements. It takes time but, it just might work.

Sharon,

I have only been living with itp for about 15 months ( I think I have had it much longer looking back on things). I can relate to how you feel. I'm only 28 and I feel like I'm older than my parents sometimes with the achiness and fatigue. The past few months I have connected with someone from pdsa who is similar in age. We began emailing each other on a daily basis. It started out as just itp stuff but we began becoming fast friends as we have many things in common. We know exactly what each other are going through. It's nice to be able to vent or have her vent, because we are in the same boat. I have friends and family who truly care about me and understand most things but having someone I can email with itp and tell everything to and visa versa has made a world of difference.

Kris,

I can relate to that how healthy you look thing. I was diagnosed at 27, always youngest patient at the hematologist office. I complained about how fatigued and achy I was all the time. He said well you look great. Itp would never cause those symptoms. Well I went into a depression for two weeks, refused to go to the doctor for CBC's thinking I was just crazy or something else was wrong because itp doesn't cause fatigue. My dad finally convinced me to get a 2nd opinion so I drove 4 hours to a specialist. The first thing thing he said was I'm sorry you have this disorder at this age. He asked how I was feeling. I said I am fatigued all the time. He said yes that is a symptom of itp. Then he went into theories about why. For the first time someone understood me!

On a second note, my boyfriend went to the pdsa conference with me last year and he understands a lot more about why I don't feel good sometimes and is more caring and concerned. He is in the medical profession so now of course he knows all the terminology too.

Kris and V,

Thank you, It really does help to know that things I feel aren't absurd and others truly feel as I do. Especially about the not setting dates, keeping time open, being kind to yourself in taking the time you need to rest. I've had my past Hematologist tell me that my fatigue and joint pains and such had nothing to do with ITP. Then some time back, oh all these studies that I take part in and the doctor himself, say yes fatigue is a symptom, and I believe the aches too at times. I've also learned there are many crossovers between other auto immune disorders once the ITP has been for over a certain number of years.
And it is pretty funny, that I always get how healthy I look (unless I am really sick, then it hits me hard)… but chronic illnesses are like that I guess, hidden under it all.

Sharon,

I think you are right about the crossover of other autoimmune disorders. I also have grave's disease. I was diagnosed at 22, went into remission at 24 and then itp at 27. I have this fear of developing a 3rd one.

I really feel for you. Nobody understands until they have an auto immune disease how you can feel. People develop empathy when they go through something like this and we are all here for you. It shows you how life can throw you obstacles. Each one of us are suffering from an autoimmune disease, be it itp, lupus graves etc and it can be so trying. No one can understand the anxiety felt by us. Wondering what issues can arise. But this is what we were dealt with, we have to adapt.

I never thought much or was scared about my itp when I was young. I started getting other symptoms and it impacted on me. The point about immune diseases is if you have one you may get another, or you may not, we could spend hours worrying but it doesn't do anything. You have to live as healthy as you can. My dad died last year suddenly, from a heart disease and I spent the last year worrying about my health and crying about it. Why did this happen? How could I possibly change it. The only thing to do is not stress about it. I wish I could go back and find out what triggered it but that's the funny thing about auto immune diseases. There are no answers as of yet. We can only live our lives and accept the things that go wrong. It's not fun but wake up every day with a smile no matter what. You are living and you are brave and will keep going despite the aches and pains. This is your thing but I'm here for you, so is everyone else. I understand the anxiety that fills you and it helps to talk. You can't control your body but you can try control your emotions. My cousin has cf. when he was born in the early eighties a lot of people with the disease died in their early teens. Yet, I believe because of his spirit and good attitude he is into his thirties and done well. His attitude was, ya I have this but do I let it take over. Ya it's there and he ends up in hospitals sometimes but he keeps going. Hope this helps