When does the anxiety ease?

I was diagnosed with ITP this month after a we noticed my platelets dropping since January. My latest count has actually gone up (66k) without treatment, so my question is: why am I obsessing? Ever since January, I've probably not gone one day without worrying. I check my body for new bruises every night. I cringe anytime I get hurt in the slightest. I worry more about potential accidents like in the car or at work. It's rediculous. 66k should make me happy! So why do I feel like I'm never going to stop worrying?

So, what do you think? Did you ever get to a point where you stopped obsessing? What changed your perspective?

I don't want to live like this. I feel like a hypocondriac, and that's not how I want to live my life. I go back on Wednesday for a new count to see if my platelets truelly are rising. Maybe I'll feel better then? Though I've been bruising this week... Ugh!

Thanks for letting me rant. I love these forums. I check them nearly everday and it comforts me to be among others who understand

I was diagnosed two months ago.. and was in the exact same boat you are in now.
I was at 14K in the hospital.. then went up to 80..then down to 70..then up to 90.. then down to 40.. ext.. It's been all over the place (On Prednisone).. mainly in the 30s than anything else...
I was at 11 on Tuesday with just three small bruises.. and at first I was a little nervous (the doctor was WAY more nervous than I).... but clearly I am not dead today.. and I figured out I was taking a supplement that was interfering with platelet production, so I stopped taking that.. and I can tell me count is up.. maybe in the 30's now is my guess. (I'll find out tomorrow)

The answer is YES! You will stop obsessing.. it just takes time. One thing that really helped me was to start studying hematology.. no joke, I bought four books on it.. and two on the immune system. It's helped me a TON.. just understanding how everything works... but that's just me.. I don't know about everyone else.

Give it some more time... it'll ease soon.

It's individual for each of us. After 17 years, I can't tell you when I reached that point, but it was a gradual progression as I became more informed and comfortable with knowing the options. In the beginning, I haunted the original pre-cursor to this board every night for weeks and did extensive web searches. It didn't help that I was diagnosed with Hashimoto's thyroiditis in the same month. You come to the realization that very few people actually die from this and there are treatments. Admittly some of the treatments are inconvientent, costly and/or have side effects and it takes time to find the right balance for you. I was one of the fortunate who did not have to treat for the first 15 years, I ran in the 50-60K range. Like I was, you haven't had to face those choices yet, but you also haven't found out that you can and will do it when the time comes.

These boards are a great thing and I'm back to being a regular since I had to start treating a year ago. However, you'll find that many get remission or come to terms with the condition and leave us to get on with life or only check in periodically. Unfortunately that also schews the messages to the those who are struggling which can be scary for the new people. Sometimes a bruise is just a bruise

One thing that helped me was getting the right hemotologist and buidling a relationship with him. My gyn and PCP were too concerned and would spook me since they really were not comfortable treating ITP. My first hemo was matter of a fact and calm. After he retired I went through a few who I fired a few before I found my current one. Until I dropped below 30K, I was probably the wellest person he saw and the every six month appointments some times left me feeling like I got a pat on the head, but he was good to discuss any questions I had and encouraged me to come in if I had lots of unexplained bruising or nose bleeds I couldn't easily stop in 20 minutes.

One of the best ways to appreciate where you're at is to find an a charity or cause to give some of your energy to. You find that it's hard to focus on your own issues when there are people out there in far worse shape.

I can't wait till I get to the point that I quit obsessing! I've been diagnosed for 3+ months now, my counts have been well over 100, even over 300 once, for over a month and I still find myself looking for new bruises everyday! It seems to me that I was doing better about all this when I was first diagnosed. Maybe it's because it's still a hurry up and wait thing. I've been on NPlate, that's what keeping my counts up but I know when I quit taking that they are gonna fall again. So now the Rituxan. I know that takes weeks to work, if it will work at all. I dunno. I hate waiting.

From since march I've been living between 0k to 3k apart from a Dex Pulse that took me to 92k and lasted 10 days. I go to work, I go to church,I go shopping. I'm not suggesting to anyone to do this! Even cbc's don't get me down too much. Since I've been diagnosed in January It has deepened my faith in God, I keep praying and that has helped me to obsess a lot less and have a sense of peace.

Man, oh man, do I know what you're talking about. I am THE ULTIMATE obsessor. I was diagnosed one year, three months, and seven days ago (does that clue you in to my obsession?). I have had normal counts for over a year, usually in the 200s. I was treated with rituxan and was lucky enough to have a full response. In the beginning, I was far worse. I was on this website and other internet sites every hour. I looked up things on ITP in books, magazines, and of course the internet. I lived it, breathed it, cried it, obsessed over it, and ultimately LIVED with it. I was convinced that my ITP would lead to cancer and that it was the first warning sign. I asked my dr. the question at every visit. She would reassure me that it was classic ITP and not to worry, but alas I was googling the second I walked in the door. I was a freak of nature before with being a hypochondriac and ITP made it even worse. But...I will tell you that it does get better. I still visit the site daily because of the wonderful people that I can relate to, but it doesn't rule my life. I am so thankful that I am in remission and I hope that it lasts a loooooooooooong time. I really shouldn't complain. But...every now and then I sink into that dark place. The obsessing, the googling, the crying, etc. I have gotten A LOT better and now I realize that I can't let ITP rule my life. If it does, well, then I don't really have a life do I? Everyone here knows how you feel. It sucks. There is no other word for it. But like Bunnie said, it is a walk in the park compared to other not so friendly diseases and disorders. I guess in a sense we should be thankful that this is "all" we have, right? Hang in there. It will get better.

Natalie

My hematologist works in an oncology office, and that's where I have to go on my visits. Every time I go, I see people so sick and it really does put my life in perspective. I know what you mean when its said that I'm probably the healthiest person my dr sees.

Thank you so much for all of the advice, it really really helps. I think I need to put my energy into something more constructive than worrying. I'm in school this semester and I'm not doing well at all. I should spend less time obsessing about ITP and more time focused on the things that matter.

I also go to the Oncology Dept. at the hospital. It's kinda discouraging to see all the stuff about cancer everytime I go. I do understand that I'm "lucky" to "only have ITP", but there is always that underlying question if there is something else, or something else could arise. I dunno, I take it one day at a time, even one minute at at time sometimes.

I took a few courses in DBT. It is very helpful. (Dialectical Behavioral Therapy)

I've had ITP almost 1 year now. And I think I have stopped being "completely" obsessed. When I was first diagnosed, I was just like NatalieM. It consumed my life. I read everything about ITP convinced I had Cancer. But as time went by things got a little easier. I had my last Rituxin treatment over a month ago and my numbers have been in the 200's. I am very happy! But I still have that little bug in the back of my head saying not to get too comfortable. I still wake up in the morning looking for brusies. I think that is just how it will always be. I am just more comfortable knowing it is treatable and not somthing worse. It will get easier

All I can say is that it does get easier. You learn that as long as you can get your counts up, there really isn't anything to fear. It does also help to gain perspective by looking around. There are worse things that can happen to people.

Denial is the first thing I went through.
I was totally under the impression it was the over-doing my 40th birthday! Had one heck of a throw down of alcohol. Well the next day I found I had many many bruises. I could not understand, I remembered most of the night... Then the red spots started in. Then I was so tired. Went to the Dr about a week after, he sent me for some labs. OK so he is just checking to see what it could be. One of the tests was a bleeding time. After 15 min and I had not stopped the lab tech said "this is not good & I will be seeing you again for more blood...." I about fell out of my chair when the Nurse from my PCP called and said they are sending me to a Hemo, "but don't worry...." Yeah, like that wasn't going to happen.
That was a year ago. I had draws every 2 weeks as I "refused" - well that is what is in my medical chart - Whinro. I flat out asked the Hemo if it was life threating to live in the 40K's he said "No, just don't juggle any more chane saws." (no I did not do this before). I have continued to follow up with him. I will see him next week for a new count - will see how low I went after being off prednisone for a week.
I do a quick check of my legs, arms just about everyday. Husband insists he check me everywhere else at least once a month. I have not changed my life style. I agree about the Prayer! I have Thanked God many times, it is not as bad as it could be.
It has only been one month. Give yourself time to adjust to the newness of everything. It will come.

At the time I was diagnosed (fall 2000), one of my best friends suffered a recurrence of acute mylogenous leukemia. My hema assured me that people with ITP have normal life spans. My problems and my condition seemed so much less severe than those of my friends, that I didn't really ever develop anxiety. Another thing that probably prevented my anxiety was that I didn't have time to be anxious--I was trying to work, have a family life, and help my friend--who died the next year.

I regard ITP as an inconvenient disorder, but it isn't nearly so awful as many other things. I know that some people have suffered a lot more with ITP than I have, however.

Courage--

When does the anxiety go away? Never. I don't know anyone who doesn't get a little bit stressed out while waiting for the lab report to come back with the latest count. I can pretty much guarantee that my blood pressure and heart rate both spike when I'm sitting the room waiting for the lab results.

When does the anxiety ease? As quickly as you learn about ITP. You learn that, for the vast majority of us, ITP is not life threatening, and your anxiety eases a bit. Then you learn that counts of 20 or 30 are just dandy (even though most ER docs would freak out when presented with those counts), and your anxiety eases a bit more. Then you learn that there are a dozen or so treatments that you can work through looking for something that will bump your counts, and your anxiety eases a bit more. Yah, many of those treatments are annoying and not something you really want to take, but the vast majority of ITP'ers find something that boosts counts and/or they go into remission. Then you learn that your goal is to find something that bumps your counts, not a cure, and your anxiety eases a bit more. And, then you learn that you can deal with anything if you just keep your good spirits and charity -- helping others whenever you can, and the anxiety drops to something you almost welcome -- a buzz in your chest that reminds you that life is precious and something to be lived with gusto, and then you smile and go ask your kids if they want to go play soccer at the park.

Well said Steve.