scared and confused

Michelle,
I understand completely how you feel. When I was in the hospital last year for over two weeks, I felt completeley hopeless. My platelets kept going back to 1000 (even after treatment). Then two weeks after I was released from the hospital, I go to the doctor to get my CBC--and again my platelets went back to 1000 (so back to the hospital I went). while in the hospital, one nurse even mentioned to me before I went to sleep--"Hope you make it through the night". So I was terroized too. I did try to hang in there, though. I truly have a lot of faith in God which really helped through my crisis (and my husband would stay with me at the hospital--which helped a lot).

Even though it is hard, I would try to pick myself up and go on with life. The first thing I did was to start exercising again. This gets the endorfins going and you start to feel better. I started out just doing stretches at home and a little pilates. Then I added the stationery bike; then went on to swimming.

So it is normal to feel somewhat depressed for everything you have gone through. You need to understand it is okay; get those feelings out in the open. Then, see what you can do for yourself to make yourself feel better and more happy. I, too, live with the thought that my platelet can go back to 1000 at any time. Actually, my hemo knows I understand my illness way better than most of his patients. So, he told me he didn't need to see me for a year for another CBC. Of course, I will probably go to my regular doctor in between to get things checked out. Actually, not having the CBC done all the time helps make me forget about it in the meantime.

I am glad that your platelets are holding up. And, I wish you the best and hope you feel better real soon. We all do understand.

Dee Dee

Michelle, I think once you realise that low platelets for someone with ITP are not nearly as dangerous as low platelets from other causes you may start to relax. I wonder if your medics.. the doctor and nurses are not helping with their attitude. Having a haematologist with a laid back attitude is what made me feel fine about it all.

When I had a bone marrow biopsy with a count of 2 my haematolgist said "you ITP guys don't bleed so it won't be a problem" and he was right, I didn't bleed much at all. And afterwards I went and caught the train home as usual.

If you're not getting this sort of support from your medical team then you need to find another team who will treat you with confidence. I once saw a stand-in haematologist who panicked at my count of 1 and wanted me to sign something to say that I refused to take 60mg steroids. When I saw my regular haematologist next time I told her that he was no use to me and I didn't need a doctor who panicked. I never saw him again.

I was talking to a woman who works with people with autoimmune liver disease and she said that we need to stop wishing that we could be like we used to be and recognise that from now, this is the way it is and we move on forward from this new point. Once we accept that we do better.

Ann:

My hemoltolgoist and family doc are great they are not the problem. It’s entirely me that is the problem. These is why I need to call my “head doc” and have some session with her and learn how to accept I now have this and how to cope with it. I think for me I’ve had too many “new normal” in a span of a few months and I am just having a hard time coping and dealing with it. Please dealing with the lost of my mom, missing her and feeling lonely every time I am home. I was used to having her around. Plus I am dealing with a guilty over her death, feeling like I maybe should have done something different. That’s a whole other story, not meant for this forum

Oh Michelle I'm so sorry, you have a lot going on. Of course you know in your heart that you did all that you could for your mom and you shouldn't feel guilty. I imagine ITP on top of that is hard to cope with. When you do come to terms with things you will see that ITP is not something to be afraid of and it will all come into perspective.

Hi folks:


Just want to let you know my computer was down and that is why you haven’t heard from me in a few days.

Seen my hematologist on the 19th,. We are now down dosing the prednisone more. I am down to 40 now and last blood work platelets were 232,000. I finally got my period.

I am still nervous with the down dosing as I am afraid the platelets are going to crash again. I try to tell myself they will stay up.


My Christmas wish is that someday and soon someone finds the true cause of ITP and we have a cure or vaccine for this and eliminated ITP all together.

Even if my ITP resolves itself or goes into remission, I don’t think I will ever stop worrying about it and will still constantly be checking for rash or black and blue and worry with every unfamiliar pain or symptom.

I am getting a good cold also. Runny nose, coughing, sore throat, ect.

Michelle

Michelle,

Besides having the cold coming on, it sounds like you are doing a lot better. Your platelets at 232,000 after all this time is really good. As time goes by, you will not worry as much. I, too, worry about mine--but with time it does get better.

Wishing you a very Merry Christmas and happy holiday.

Dee Dee

Michelle - you will stop stressing over it eventually no matter what happens. Everyone does get to that point. Even the ones with chronically low counts move on....you will too.

Thank you dee dee and sandi. I think after the new year I will call my “head doc” and make and appointment. I know I said I was going to do it last month and this month but I will for the New Year. I think that will help me a lot.

Everything since ITP is new to me is making me nervous right now. But I guess I should be happy and thankful that at least my body is responding well to the predisone and the down dosing for now.

I am thinking about looking for a less stressful job in the new year but then I wonder if anyone would be willing to hire someone with this condition and a lot of miss time at work with bloodwork and doctor appointments. When for now I have protection with my FMLA a my current job though April 2012. but it’s a stressful job.

I am going to start exercising in the new year, anyone have any suggestion of what kind of exercise I should start with, I don’t want to cause my platelets to crash or cause any kind of bleeding to start.. My knees are brothering me a lot though.

Michelle,
If you are job hunting, don't tell potential employers about your medical situation, it is none of their business. You simply use the sick time you get as a benefit of your job if and when you need it.
Erica

The doctor visits will slow down. There are always a lot at first. I wouldn't tell them either.

Exercising won't cause counts to go down. Your knees probably hurt from the Prednisone taper. That is pretty common. Just start slow with stretches and light weight lifting.

Thanks again everyone. I really don’t know what I would do without this websiste.

I have a cold, sneezing, coughing ect. IS this something I should worry about with having ITP? Can the down dosing of prednisone cause a these symptoms as well? Should I go to the doctor next week?

Some people have platelet drops when they are sick and some people find that their counts go up. For some, nothing happens to counts.

Tapering Prednisone won't cause cold symptoms. You don't necessarily have to go to the doctor. Would you go if you didn't have ITP? They can't do anything for a cold. If you think it is turning into an infection though, you might need an antibiotic. Sometimes those can cause platelet drops though, but sometimes they don't.

Thanks sandi. I think it's just a general cold.

Michelle,
I agree with Sandi and Erica, if I had my time over again I wouldn't tell my work either and actually it has effected my work enough that I have considered leaving and finding a new position, every thing I do and all discussions with my boss my ITP and RA is brought up, it is really bordering on discrimination. I really had no choice though because when I first got ITP I was in hospital a lot and always at the doctors, but as Sandi said the amount of time at the doctors does get less and less. Neither of my medical problems causes me to have time off now and I think out of an office of 20 or so people I have the least amount of sick leave, I have not had a day off this year apart from one day I took my Methotrexate in the morning and came home about three hours early. Sometimes though people get the idea in their head that you are this sick person and I don't consider myself to be sick.
Glad to hear your counts are staying in a great range.

I just recovered from having the same symptoms. Counts dropped about 10k. No way of knowing if is was due to the cold or just natural fluctuation. For my own peace of mind I usually have counts checked when symptoms improve. Hope you get better soon and counts behave!!!

Milly--That's not right how you get treated at work. Sometimes employers just want to use an illness as an excuse to pick on you (I worked at Boeing for years and that was what I found to be true). I just tried to act professional and go about my work. But some people always seem to make it difficult.

Michelle--If your plateles drop, it will probably just be temporary. Just make sure you rest while you are sick. They do move up and down; but, I found that rest seems to bring them back up. Also, on exercising--just start out slowly at first. You can even get a video for you DVD player that has stretches and similar exercises (I have one with pilates). I have a small DVD player that I use to exercise while I watch TV; makes it more fun. Also, a stationery bike is good during the cold season. You just want to make it fun--and not to stress yourself out.

Good luck to you and hope you feel better soon.

Hi folks. I know it’s been a while since I’ve been on. Computer was down yet again. I am now down to 10mg of predison , last blood count was 260,000.

Now I have a question. I just a few minutes ago conked my head ever so slightly, it was not a hard hit, it was with something fairly soft. Should I worry or get it check out or which for certain signs.. I know with ITP hitting the head is not a good thing or should I only worry about that if my plalates are in the danger low point? I have been trying ever so hard to avoid hitting or getting my head hit.

I see my hematologist next Friday and get blood work done on Monday again.

Thanks for your help.


Michelle

Michelle,
With your counts at 260,000 I wouldn't think you would need to worry about lightly hitting your head. I've been horseback riding, but am still very careful about hitting or bumping into things (just as a precation).

I am so glad to hear that you are doing better and that your counts are staying up. Try not to worry too much.

Good luck to you on your next Dr. visit.
DeeDee

Michelle - when your counts are in normal range, you are just like everyone else (without ITP). No worries!

Thanks everyone for you input. I went to the ER to have it checked out anyway and it actually was a good thing I did. I had no brain bleed and my platlets count was 220,000.

However with the CAT scan they did spot something else. So they want me to go to my family doc for a follow up on Monday and have an MRI schedule the doc said it would give them a better picture..

I’ve been having a pain off and on the right side of my head for awhile. I have mentioned it to both my family doc and hematologist. They both just put it off as a sinus and I’ve been have light nose bleed from my right side of my nose and some blurred vision off and on. Back in December the one day I woke up with the right side of my face swollen and blurred vision. So I went to my family doc that day, she again just thought it was sinus. I have an appointment with my hematologist this coming Friday and I was about to ask her about getting my head check out with this pain. So maybe it was a blessing in disguise that I hit my head and went to have it check out anyway.

The doc at the hospital said I may have had a min-stroke and not have know it or it can be something else, she said it looks like something to do with the nerves or the covering of the nerve.

As usually I am on vacation this week from work, my brother said he’s not letting me have any more vacation cause it seems I’ve been ending up in the hospital or medical stuff every time I am on vacation. LOL

I’ll keep you all posted on this new issue.

I go down to 5mg of predisone next week but I am scared of what is going to happen once I get stop the predisone. I’ll try to think positive.


Michelle

Michelle,
It's good you used your intuition. Hopefully, it will turn out to be nothing--but it is still better to get the MRI and find out. As far as your Prednisone goes, you've done good so far, so just try to think positive.

Good luck to you and keep us posted.

Hey Michelle so glad you are getting this checked, not that I think that there is anything wrong. It just seems to be worrying you and maybe this will give you some peace in your mind. Happy to see those counts staying up there.

Hi all:

I had my appointment with my hema on Friday. She did bloodwork while I was there. My count is down to 179,000. On Friday in the ER it was 220,00 and on Monday it was 203,000. It is scaring me to see the counts dropping with each bloodwork. I am down to 5mg of prednisone and as of Monday I am off of them. The hemo said I was doing good and she did not suggest any alternative treatments at this time and if things stay ok I don’t have to see her until March. I am just scared they are going to drop again and now with this other issue with my head/brain that has me all worried, scared, afraid and worked up. I know I am putting the cart before the horse but obviously they seen something.


The family doc did call me to discuss the first MRI (without the contrast). They didn’t’ see any tumors, brain bleeds ect. However there is an area of Hyper I(something or other I forgot what she said) and now the family doc wants to see a Nerulogoist.

It just seem like ever since this ITP found me, it’s starting to be one health issue after another now. I just feel like shutting a door, staying in bed and not going anywhere, or do anything cause it just seems like when I do , another health issue comes up, I guess I am having a hard time with all this because I”ve (expect for my thyroid) been pretty health all my life and now it just seems like my body wants to be sick all the time, even though I feed it right and treat it right. That’s what makes me angry the most, the my body had turned against me, even though I’ve done as much right as I can for it. I honestly don’t’ know how much more I can handle. I fell like I am ready to have a nervous breakdown.

I’ve also been missing me mom something terrible lately and have been crying a lot and feeling very lonely.

Thanks fop listen and any advice you can give.

Michelle - I've been there. I've had one thing after another for a few years and I know how frustrating it can be. A few years ago I was just adjusting to a Lupus diagnosis and the symptoms I'd had to live with when a new thing popped up. One morning I got into the shower before work and when the water hit my legs, I began to have neuropathy (pins and needles) in both legs. It didn't stop when I got out of the shower. It felt like sleet hitting my skin. I called my doctor who referred me to a neurologist and there I was going for MRI's and EMG's and all sorts of other tests. The neuropathy then started in both arms. The neurologist had no answers for me. My Rheumatologist told me that she thought I had MS. I probably hit my lowest point then. I couldn't handle another diagnosis. She was wrong though; it was just another Lupus complication.

Soon after that, I began to have autonomic symptoms - it began to affect my blood pressure. Every time I stood up, my blood pressure dropped and I would pass out. I was really getting scared that I would get to a point of not being able to work or function alone. None of the tests really showed anything except low B-12 (which was not the cause of the neuropathy) and some minor nerve damage and nerve entrapment in arms.

Oh, the MRI did show that I had herniated disks in my neck; I wasn't expecting that. That was four years ago and I am having a lot of problems with those still. I think it progressed to stenosis because of the symptoms I've been having lately. I meant to call this week to see if I could schedule another MRI, but didn't get to it. I've been to physical therapy, saw a physiatrist, a muscle specialist, chiropractors, the list goes on. None of it helps.

Anyway, the point is that some of the symptoms have eased up and some have gone away as far as the neuropathy. I thougt I'd have to live with it forever the way it was, but it comes and goes and I am grateful for that. Nothing serious showed up in the tests and life goes on. There are many things that can show up on an MRI that may not be anything at all, but only a neurologist can determine that. When my neurologist found the herniated disks, he referred me to a neurosurgeon who pretty much looked at the MRI and asked what I was doing there. He said that I wasn't a surgical case and didn't know why I was even referred. In that case, even the neurologist didn't know enough about it. You can worry yourself sick and find out that it was all for nothing. I've done that so many times that I have learned to stop doing it.

It really does stink when your body does all of these things. It's mutiny! I think Erica said it best when she said "the body is so complicated that it's amazing that it ever works right at all".

Your counts are still great and the drops could just be normal fluctuation. Try to stay positive. Anything can happen, even something good.

Hi Michelle

I haven't got ITP, my son has. But as a parent, I find that the less I look for symptoms and get his count tested, the less I worry. The last couple of weeks, the doctor has asked me to get him tested weekly, and I am finding that its making me slightly obsessive - its a bit like dieting and getting onto the scales every morning! Try and stick to looking for the obvious symptoms and get tested less because there is a lot of natural variation in counts. And try not to second guess what direction your count is going in, its so easy to get it wrong! 179 is still a really good normal count - one of my kids without ITP has that sort of figure.

I hope your head issue turns out to be nothing

Ali

Ali, you are right about that. The doctor told me not to come back for a year--and I was concerned at first--thinking that is a long time. But, the counts do fluctuate hourly and daily, and it is best not to get too worried about them. If you think something is going on, then I might start to worry about them. In 2010 when my platelets crashed, I knew in the back of my mind that something was going on and should have tried to take better care of myself (like maybe rest a little more--lay-off the diet coke, etc).

Hi Michelle,
Sorry to hear you are having such a hard time. Try not to worry about the counts though they are still good.
It sounds as though the doctor are acting on the MRI so you will soon know the results of that but it is good that there was no sign of tumours or brain bleeds, it can be scary though so the sooner you find out the better you will be, we sometimes worry more not knowing then when we know what we are dealing with.
I also think that when we all visit doctors so much and have so many tests done that we are aware of health things that we probably wouldn't know of if we weren't having so many tests.
I know when I very first got ITP and was having blood test done all the time it just seemed like every test showed something else wrong, first it was unstable platelets, then a para- thyroid tumour, then thyroid, then fibroids it just went on and on until the last thing of RA, BUT Michelle you do have the strength to deal with this and you will get past it all, you just have to find the strength and carry on with your life. Maybe a support person or a councellor could help you deal with these things. Does you doctor know how bad you are feeling, maybe this would be a good place to start. Don't ever be ashamed to just say I am not coping and I need help.

I hope you can find some peace Michelle, you have had a tough time and deserve a break.

Michelle,
I know you are really having a rough time of it, but try to take just one day at a time for now. Things are sometimes not as bad as they seem or what we make them out to be. I understand how you feel; I tend to be the same way at times and get anxiety just thinking about things. And, this anxiety can cause the depression. And, remember, your platelts change from day to day (and hour to hour). Right now, they are still very good.

Sandy:
I'll have to say that you are amazing for all you have gone through--and you just keep working. You have a very strong will and character. How long after you had ITP were you diagnosed with lupus? I have read that sometimes ITP is a side affect of lupus and that lupus can take a few years to diagnose. Also, did you have a low thyroid before lupus? I think a lot of us can be prone to lupus--it just takes something to push us over.

I had ITP for 7 or 8 years before I was diagnosed with Lupus. Prior to that, all tests normally used for Lupus were negative. I believe that also - some people are predisposed to it and all it takes is a trigger. I have to keep working to keep my health insurance...no choice. I can't afford myself as it is!

I don't have a thyroid problem...I've been tested many times since it can sometimes also go along with Lupus. My daughter has Graves though.

Sandy, thanks for sharing with us. I was talking to my neighbor a couple of days ago (she's around the age of 55), and she mentioned that she got lupus from taking too high of a dose of Lipitor (her doctor kept uping the dose). I'm finding more and more women have lupus then I remember from before. I don't think it's that prevalent among men (lucky men!).