TOPIC:

I'm 23 and was diagnosed with ITP in March of this year. I feel that ever since my diagnosis I've turned into a hypochondriac. As soon as I see a bruise I tend to freak out, mostly because I have refrained from the activities that previously have caused bruising. This past week I started my period, and paranoia set in. I am on birth control, and normally have a 3-4 day period that is very light, this week I have had the exact opposite. I also realized a few small bruises on my stomach and legs. So hear I am freaking out once again. Does anyone have anything to help me with the paranoid feelings of ITP or a way that they get rid of it? Before ITP you had to drag me to the doctor now it seems that I'm debating on getting a CBC every other week.

Today I became so paranoid I actually ended up getting a CBC, still waiting on the results.

Are you taking medication for your ITP? Have a standing order for CBC's- maybe you can get that set up so its not that big of a deal to check them. A long time ago someone posted- if you are in doubt its better to check. Also, if you are on prednisone, it does cause easier bruising so that keep that in mind as well.

Hi Kaluebke- welcome to the ITP family. I often think the worse part of ITP is fear. Many ITP'ers were otherwise healthy or simply unaware of their condition until that day the MD first scared the devil into us and we heard we might die. We're suddenly confronted with this frightful disorder and literally told by an MD we're at risk of bleeding to death, put in the hospital without comprehensive and understandable explanations and told we've got to have immediate surgery! It's more than I could comprehend and without knowledge we're left to worry. And on top of that there's a lot of time to think and worry!

You're no longer left to fear alone! This group has been there and understands the fears, concerns and choices that you're experiencing.

As impossible as it seems now, we can help you quickly. Knowledge is key. Knowledge of treatment options and questions to ask will ease the fears. Knowledge of shared experiences will bring Comfort that there can be normalcy in the midst of this storm of life. Knowledge breeds Acceptance there is life with ITP. Knowledge will soon encourage Confidence that you will experience a full and joyful life.

It may be a "bumpy" road because knowledge can scare the devil out of us! ITP is a serious disorder that requires attention and awareness. There are things we need to do (CBC's) and maybe there are some things we can't do, but do's and do nots are few in my experience.

Certainly some of the treatments have negative side effects - heck there are warnings on aspirin! Steroids side effects are legendary - moodiness, sleeplessness, hunger... - but they disappear as we taper off the steroids but we all know it isn't fun. Treatment decisions; splenectomy, WinRho, Rituxan, N-plate.... They are made easier if you are confident and comfortable with your MD. You should be able to ask questions of your MD and they should take the time to explain options and answer questions. Experiences here show there are MD's that have little, if any, practical experience with ITP and just have the book knowledge (A=B therefore C). If your MD isn't working with and for you, find another one who will!

You can start your knowledge quest right here - ask questions, express anxieties, share your experience, read the info embedded in this site. I like to say you're now part of a new family, a family that never sleeps (no pun intended - ok maybe a little steroid pun) This family spans the globe and is available 24x7.

Most of all, know we care, know we share and know you're not alone!

Kal:

It might help if you actually identified what it is you are really afraid of. For some, it's the fear of dying, for others, it's the fear of having to treat. At any rate, if you can figure out where the fear lies, it may get easier.

Steve is right when he says knowledge is the key. Learning about ITP does alleviate fear when you find that very few people ever die from ITP. Also, if you respond to treatments and can get counts up, there is really nothing to fear. You have a disorder that you can control and while it's not always pleasant, it's managable.

Part of dealing with it is also putting things into perspective. I once read an article about ITP written by a doctor (I'll try to find it) that says that if you have to have a hematological disorder, ITP is probably the best one to have. There was a woman here once who had ITP, and years later was diagnosed with Autoimmune Hemolytic Anemia. Getting that second diagnosis really put ITP on the back burner for her and she realized that it wasn't all that bad. Of course, everyone has a different experience, some worse than others, but in time you will realize that ITP is do-able. I think it can be normal to obsess at first about every bruise and every red spot, but soon you will stop looking. It gets easier.

How have your counts been and what have you treated with? I used to always get myself through it by convincing myself that my counts were exactly what they were at my last CBC. For example, if my counts were 75 and I wasn't scheduled for another CBC for a month, I would just tell myself every day that the count was still 75 until I heard differently. I knew if they dropped really low because of the spontaneous black bruises that popped up. I didn't let myself worry about little ones or yellow ones...those happen to everyone. If I didn't have many symptoms, I knew that whatever the count, my body was handling it okay. If I found out that they dropped to treatment level, I learned to just take a breath, accept it, and do what I had to do.

Everyone gets there eventually. I haven't seen anyone yet who still freaked out after a year or so. I've been here since 1998 and we all get to a comfort zone. You will too.

ITP is very scary: I was REALLY freaked out when I was diagnosed in my early 30's. I'm 59 now.


I too have learned to cope and accept it and get used to it, but the real event that turned me around was about 10 years ago when I had symptoms suspect to HIV. I'd had blood transfusions for ITP back when the blood was not tested for HIV, and all my symptoms suggested HIV. NOW I really knew what freaking out was! I was tested, and it took FOREVER to get the results.

I still to this day remember the elation a feeling of redemption when the HIV test came back negative. It was like a new life had begun. It made me realize that of all the horrible diseases and afflictions out there, ITP "ain't so bad" after all. I also rejoice in the fact that I made it to my adult years before I got it. It breaks my heart to read posts here about little kids and babies who have ITP. I'm so grateful I didn't have to face this as a child.

Hi kal,
Time is what helps with the paranoia, and it does get easier. When I first got ITP I would have had a test everyday if I could have just to make sure everything was ok (now that's paranoia) but after a while I learned to relax. To be honest it took about six months to get to this stage and I don't know why as time went on it just got easier. I think a big thing to remember is that even people with counts in the 200 and 300 get bruises and you will too.

My advice to you with the period lasting longer and being heavier is to get that count done and if it is ok look for what else may be making it heavier, sometimes we tend to blame every thing on the ITP and there may be other things that is causing this.

I think Sandi has said it right when she said try and work out what scares you might be able to relax a bit. The thing that scares me is having a bleed in the brain but I have learnt not to worry as much about this. This could happen to anyone with or without ITP.
You are not a hypochondriac, just a person learning to live with a new condition.

Thanks everyone it's nice knowing that it gets better, I think my biggest fears are going back on treatment. I gained almost 50lbs on steroids earlier this year. I have been exercising and eating right and with my body getting back to normal I'm starting to be myself again. The hardest part of ITP for me was watching how my body went from tight and fit to round, and my personality changed with it.

My numbers have been sitting between 74,000 and 90,000. When I wrote the post last month my CBC came back at 80,000. I suppose that's low enough to cause my period be so heavy.

Thank you all for your responses. I truly feel like I'm going crazy sometimes and it's nice to know that you all understand what I'm going through. Now if I could only convince my family that I'm not insane

Kal:

There are treatments other than Prednisone that you could discuss with your doctor. Most people can only tolerate doing Prednisone a few times before they move on. Fearing treatment is normal; you get used to that in time though when you realize that you just have to do what you have to do.

I can definitely relate to this. I am 25 and was diagnosed seven months ago. I am still actively being treated, not in remission yet, but I'm hoping to be done with treatments soon -- as they wreaked havoc on my body. Steroids were definitely not my friend, both in terms of the amount of side effects I experienced on them and the lack of success they had treating my ITP. I also gained about 50 lbs on Prednisone earlier this year, and I'm getting pretty sick of the weight gain. I'm still on steroids, although I'm taper down, so it has been very, very difficult for me to currently lose weight -- even though I'm eating a calorie restricted diet and am avidly exercising. When I look back at pictures of myself taking seven months ago, I just become increasingly frustrated at my appearance now. Round is a great descriptor. For me, the biggest difference is my face. I have always had a pretty narrow face. I guess you would probably describe it as an oval shape -- long and narrow. Since being on Predisone, my face and neck have become SO round. You can disguise weight gain in most parts of your body with clothing, but when your face and neck become swollen looking, there isn't much you can do.

I sincerely, sincerely hope that very soon after I am done with the steroids, my body will go back to normal. I can only hope that by working toward that now, before the steroids are even done, it will be relatively easily for the change to reverse itself when they are done -- as easy as losing weight can be, I guess.

Anyways, I wanted to say I definitely understand where you are coming from when you talk about appearance changes due to treatment. And, once I am in remission, I will no doubt have a similar anxiety as you do about my counts -- because I would be nervous about having to treat the disease again, knowing all of the side effects the treatment causes in my body.

Jess, I have an idea of how you're feeling with the weight gain, Ive been off the steroids for almost a year now and still have my last ten pounds to lose (I was pretty thin before steroids) and man after gaining over 50lbs on prednisone I'll never complain about my weight again. It's hard being in your twenties and gaining such a large amount of weight. I got up over 230lbs greatest day of my life was when that scale read 198. Best of luck with losing the weight, and keep me posted I like to hear of success stories about people taking their life back after being diagnosed!

Kaluebke:

Just wondering how your platelet count is now that your off predisone? Are you on any other type of treatment for I.T.P.?

I've been very fortunate as of Monday my count is 116,000. I did an Ivig treatment while tapering off of prednisone last year because my counts always went down when my dosage went down. Since then Ive been pretty steady around 100,000 the predinose weight does come off but I've been working my rear off to lose every pound!

Hi

I'm checking back in with some good news! I have been in remission for about a month and a half now! In the past two months, I've also lost 20 of the 50 pounds I gained while on steroids -- which has been HARD work, but I'm glad that I am seeing the positive results of that work. I work out for at least 30 minutes every single day, and I eat between 1,300 - 1,500 calories each day. Personally, I've been helped by a free site called Sparkpeople. I use it to track my meals and my exercise.

I didn't get to be in remission by steroids. I was on Prednisone for about six months, during which my platelets would be in constant flux anywhere between 3k and 80k. I got put on Dexamethasone about 3 months after being diagnosed and on it for eight months. Immediately after taking the pulse, my platelets would be up in a normal range, but they would drop very quickly. I was taking pulses every two weeks, and in the days before a pulse, my platelets would be back at 20k. What did work for me was Rituxin. I did 4 cycles in January, and my counts increased immediately -- and stayed increased. I've been above 200k since about my second treatment.

I do get a little paranoid in the day or two before I go in to get tested (which is once a month now). I'm not sure if that will ever go away. Certainly not for a while. Right now, the biggest emotion I feel is resentment. I hate that this happened to me. I hate that it dominated my life for so long. I hate that I don't know why this happened. I hate that it is something that is probably going to be part of my life forever. But, I hope that with time, my life will go back to a new normal that I can be happy with and this feeling will go away.

J

Jess:

Those are all normal feelings, but there is a lot to be learned from dealing with a health problem. It can make you a stronger person and you can gain new knowledge and experiences. It may not be the best time of your life, but it will one day give you hindsight that you didn't expect.

I've been in remission for 7 or 8 years now (lost count) and the same thing can happen to you. I also thought I'd have to deal with it for the rest of my life and surprise - I might not. It may come back someday and if it does, I'll be fine and I'll deal with it.

Bad things happen to good people all the time. Not fair, but that's life. To spin the perspective, be glad that it wasn't something worse. Some people deal with ITP and clot at the same time. They have to juggle blood thinners and ITP treatments. Some people have ITP and AIHA - low platelets and low red cells. Sometimes treating one causes the other one to drop - constant juggling there too.

I'm glad you are in remission - great and worth celebrating! Enjoy each day and try to move on... you can do it!

Jess it really seems like you're a few months behind me in your ITP journey. I would have nights where I'd look back to the first months of my diagnoses and just start crying because it wasn't fair that this happened to me. I was a healthy 22year old when I was diagnosed. How do you go from such a normal life to having everything change and none of them being positive. Like sandi said there's a lot to be learned within the journey. I'm at some weird kind of peace with iTP right now because it has made me such a better person. I really have learned not to sweat the small stuff, and I know that I will never complain about my weight ever again. I also celebrate life a little more, I've come to the conclusion that this happened to teach me to truly live life to the fullest. Everything can be turned upside down with one blood test. I hope you reach the stage I'm at right now. Best of wishes on the weightloss! And keep me posted

I know exactly what you mean!

I can't tell you how many times I would be sitting in my bed in my apartment absolutely hating that this was happening to me. It is so difficult to explain what is wrong with you, and get people to understand that it is serious, when you look relatively normal. How do you explain to someone that you're having chemo, but you don't have cancer? How do you deal with gaining a crazy amount of weight in a small amount of time, even though you are eating next to nothing because all you want to do is sleep?

I obviously still struggle with the "why me" part of it all, especially now that another health-related things has been dropped on my plate (probably common variable immunodeficiency). I kind of feel like just as things start to really look up, I get knocked back down again.

On the other side of things, I can relate to the idea that ITP has made me a better person. I used to take a lot of things for granted, like my health for starters. Whenever I feel stressed or upset or frustrated, I think back to the day I was in the hospital with my mom and my doctor told me that I had ITP, not cancer, and I was not going to die. After going from thinking you are perfectly healthy to being stuck in a hospital bed, not able to walk to the bathroom by yourself, and having nurse after nurse tell you that they have never seen someone walk into the hospital with hemoglobin or platelet counts as low as mine, thinking you are about to die -- problems like an annoying coworker just doesn't seem like a big deal.

Anyway, thanks for your kind words Sandi & kaluebke. I am very thankful that I found this site, because it has helped me in so many ways. I still have never (in real life) met a person who has ITP or a person who knows someone who has ITP. It is really nice to have met a community of people who understand.

Jess

It has been nearly a year since we last conversed on this thread. It is quite crazy how quickly that time goes by. I wanted to post here to 1) update you all on my prednisone weight loss and 2) rehash the idea of paranoia.

In these last nine months, I did lose the rest of my prednisone weight -- and then some. I gained approximately 50lbs on prednisone, which happened very quickly. Unfortunately, the losing did not happen as quickly. I lost 20lbs in just over 2 months, but it took me about 5 more to lose the remaining 30lbs. I am down even more from that, which is just a healthy lifestyle thing for me.

I honestly thought I was over being paranoid about ITP. Crazy, right? I made grand statements to friends and family about how the idea of going through things again wasn't scary anymore, because I had educated myself about the disease and my options. I was confidant in my levels, and I didn't even get nervous when I went in for my last maintenance check up in early June.

My platelets had been hovering in the mid 200s since remission, and they recently came back at 177. My Hemo's comment was that my platelets seem to be on a "downward trend."

And with that brief, probably off-the-cuff comment, my paranoia reared her ugly head.

I am now finding myself meticulously examining my arms & legs every day, counting my bruises, measuring my bruises, determining the depth of the color of my bruises. With bleeding, I wonder if I am losing too much blood, or if I am bleeding for an abnormal amount of time. Curse the Internet! Google has been no help in determining the average length of time a person bleeds.

After I talked myself out of going in for a random CBC for the third time in two weeks, I started to get paranoid about my paranoia. Am I crazy? Or, do I have a legit reason to be concerned?

At the end of the day, it is crazy how much this can mess with your head -- and how quickly that messing can be rehashed by the simplest of comments. I wonder, is it always going to be like this? In 10 years, am I still going to be thinking, "Man, my life was so great pre-ITP. I wish things were like that again." Or, am I finally going to accept that this is my reality and truly experience peace with everything?

I don't know if anyone has the answer to that, but I hope some of you who have been in remission longer might be able to provide better insight. I hope that I can look forward to someday being at peace about all this.

Jess:

I do not see the downward trend that your hemo seems to see. You could go back in a month and have higher counts than the 177. Most doctors would be very pleased to see normal counts no matter what they were. I think the comment was a bit premature. A downward trend is a bit more drastic and faster than what you are seeing at this point.

Life can be great with ITP. Haven't you been living a normal life in the past year or at least something very close to it? I think the question is not "why me" but "why not me"? No one is immune to health issues. Most of the people I know are battling or have battled something. My three closest friends have all had cancer and survived (one had colon, one had breast and one had thyroid). My daughter has Graves. The young daughter of a friend has epilepsy. My Mom has had lymphoma. I have Lupus and ITP. Many, many people are struggling with an illness and some are far worse than ITP. ITP may cause unsightly bruises but have you ever seen someone with Scleraderma? ITP treatments may cause weight gain but have you ever seen a child who is bloated from needing a liver transplant? It's all perspective. Your body is intact and you have the ability to work off the weight and are still healthy and active in every other way. That is something to be grateful for. I know it can be hard to see it that way but in the grand scheme of things, ITP is usually manageable and not debilitating or disfiguring.

I'm sorry if this seems harsh, but it has always helped me to put this into perspective. You can't think about what life would be like without ITP. It's here and you've done a great job dealing with it. You have already been there, done that, and you can do it again if you have to. It is what it is. You are on top of it and will manage just fine!

Jess:

I had to come back and add to this. I didn't tell you anything that I don't tell myself on a daily basis. It's easy to get depressed over what was and no longer is. To be honest, I am extremely tired of the medical challenges that keep coming my way too, however, there is no choice but to deal with them the best you can. Attitude can make all the difference. I've been there with ITP so I can relate. At least with ITP you can control things (counts) and make them better. With some medical disorders, you have no control and just keep losing parts of yourself. Reminding myself that things could be worse is one way I get through it.

You are the best advice giver ever sandi! I wake up telling myself the same things. I've been kinda depressed lately but am ready to start applying for new jobs and going back to school. I'm not letting itp stop me anymore!

Good for you! I'm happy that you are going forward.

I don't know about the "best advice giver ever" title, but thanks. I tend to tell it like it is and am not always the nicest person on the planet. I know that about myself, but I do have good intentions!

Sandi,

Your feedback wasn't harsh, it was honest. And, it was absolutely appreciated. We all could use a dose of perspective from time to time, and it was refreshingly nice for me to hear it from someone else. I don't have anyone else in my life who has health issues like I do. So, when I talk to friends & family about my frustrations, they don't always understand -- and they don't always give me the honest feedback that I need. In the grand scheme of things, I could have it a lot worse, and I should be incredibly thankful that I don't.

I think it is easy for me to let a tiny bit of frustration I might have explode into some big "woe is me" session, and perspective is exactly what I need to keep things moving forward.

You should definitely hang onto the "best advice giver ever" title.

Jess:

I get doses of perspective just watching the news. In the last week, I've seen two very sad stories. One was a man in his early 30's who was diagnosed with ALS shortly after getting married. The news story was about how the neighborhood raised money for him so he could modify his home for his wheelchair. The man is dying a slow, horrible death, and he sat there smiling and thanking everyone. He talked about how he was grateful for every single day.

The other one was a six year old little boy who is basically living at Children's Hospital in Pittsburgh. He has a fatal neurodegenerative disease. He is almost blind, can't walk, but is still trying to enjoy life. He has a goal to get a million likes on his FB page. I joined. Here is the link:

www.facebook.com/Xansfans/info

I think most people take health for granted until their health fails. I know I did. And though I never really felt the 'why me' thing, I did feel that ITP invaded my perfectly good life and was annoyed by it. Then when I got a Lupus diagnosis, I realized that ITP was nothing. So anyway, I now see things totally different. I'm not sure if that is the correct mind game or not, to say that things could always be worse....but it's better than wallowing.

That Xan is quite a kid!

From his Facebook page:

Xan is a six year old boy who has a rare neurodegenerative disease that is progressively taking over his body and now his mind.

Xan: "Well, I have a purpose and it is to help others... You see, sometimes I'm really scared and I just keep being brave... So, if I keep being brave even when I'm scared then I'll show people how to do it, too... Then, all the people I show everyday will want to be my fan!!"

Thanks for posting that, Sandi. I needed that. I ALWAYS need that!