really frustrated and i cant stop stressing!

i have a very long story..
I was diagnosed with itp when i was 10 back in 1999. I was never really fussed on it unlike my parents who were really worried and freaking out. my platelets counts were always around the 1-5k mark with a couple of occassions they were 0. i always had petichiae and bad bruising sometimes they would appear from nowhere, and when i was 11 i had got my periods which were horrible and lasted about 8 days. i had been put on pred and told that i had an 80% chance of it going away.. unfotunaly the pred didnt work it put my platelets upto about 30k but they went back down to 2k in 2 weeks. after 6 months of this they said i was chronic and they tried a new steroid dex. this was horrible i felt so out of it and grumpy and like i wasnt with it all the time i was a zombie. the dex put my platelets up to around 40 maybe higher around 60 i cant exactly remeber but again it didnt last only about 2 weeks and they were back down again. so then i had a bone marrow test which came back all good i was producing millins of healthy baby platelets and all was normal which was a great relief (mostly to my parents) thw whole time i was always so blase about it i was more afraid of all the blood tests and needles than the actual itp really freaked me out i had panic attacks everytime i had to have a needle. they then put me on intragam which made my platelets shoot right up within a normal count which was great although after about a month it went back down again. i had that a few times until i then had pred with itragam together in a iv drip and that made my platelets go even higher and lasted a little over a month then they would go back down again. i was then told after lots of trying and failing that i could just live a normal life "watch and wait" my hemo said there wasnt much point in keeping the iv up becoz she said the more i use it the less effective it becomes. so my doctors gave me a big list of info and a big list of things i could and couldnt do and what to look out for. i was 12 years old and to be honest it was dissapointing that i still had this problem but i was relieved not to have to be in hospital all the time! so i dod just that and it was kinda better but still really horrible as i was getting bullied for it consistently and kids would punch and poke me just to try and make me get a hideous bruise, my doctors were furious as they had sent the school so much info about it and even spoke to the principals and teachers about it and they completely ignored what was going on! however after that year i started feeling a lot better i had better friends and the bullying was still going on but somehow i trekked through it all. when i started high school, i noticed my periods had started to get a little lighter and weren't lasting as long as 8 days and my other symptoms started to dissappear. i still got petichiae and some bruising but no way near as bad. and for years and years the symptoms got less and less i dont bruise at all (ubless ive whacked my shin accidently) but the bruise is normal and heals normally. my periods are very light and have shortend down to 3-5 days (i had started the pill after my first year at high school) so i dont know if that has anything to do with it. and i havnt had petichiae, although i have occassionaly had light petichiae on my ankle but it is very light and only like 3 dots. so i know i still have itp. i havnt had my counts checked since i was 12 and i have been perfectly fine. however lately i have been thinking about travelling and children in the future and it has been massivly freaking me out! i have stressed so much about it its constantly on my mind and as a result i have got petichiae appearing, i got a cold sore and just today for the first time ever i have seen a tiny blood dot inside my cheek!!!! i have been avoiding doctors because i know there is nothing i can do i dont want to go back to hospital i feel so defeated. i think a lot of it has to do with stress as i am highly panic stressing i actually have panic attacks about it. i dont know what to do. all these years i feel like maybe my itp has been less serious, but now im thinking maybe its been really low this whole time. i have to say itp has stopped me from doing a lot of things my whole life was turned upside down i used to be hugly active and sporty and now im too scared to leave the house i have been this way since i was 12! i feel like im watching the world pass me by and i feel like i cant be apart of it my friends are all travelling and they go skydiving and go scuba diving and i feel like i cant do any of it! i really would love to hear from anyone with support my family have been really supportive but they have no idea what it feels like

Hi Melasund, first thing you need to do is get a platelet count done. For all you know you may have a normal or high enough count. Things have moved on in the ITP world since you were diagnosed and they now know that counts over about 30 are fine for every day and over 50 fine for most other things so even if you can't get your counts normal, you don't need to miss much of life at all.

Treatments have also moved on and if your count does prove to be low there are other things to try. There are two new drugs out now which work for the majority of people and have few if any side effects. Some do think that stress lowers their count so please go and get a check so that you know what you're dealing with instead of imagining and then you can stop stressing.

Let us know what your count is when you get tested and we'll support you on to the next stage.

yes i know i do! i realise from being on this website that there are treatements i havent heard of, i guess i have that fear of the worst. however when i got diagnosed it was such a big deal doctors (besides my hemo and specialist) freaked out at a low count every doctor that treated me made me do all the tests all over again to again make sure it was itp i felt like a little pin cushion! this used to also aggrevate my usual doctors also. they were more interested in testing me for all other types of things other than treatments for itp. so there is a fear of repeating all that all over again and i do tend to be hypercondriac

it's soo strange that all of a sudden it's really got to me none of this has ever bothered me before up until now. i have 2 very pale dots on my ankle and i'm panicing like its the end of the world! i feel so stupid! but i have to say this website is soo good i have felt a lot better reading other peoples stories and about new treatments it's very uplifting! positive thinking i think definitly makes a differece even if it doesnt raise platelets it can help a lot!

Ann said exactly what I was going to say. Many women with ITP have healthy babies and there is a very good chance that you will too. There is no reason to stress until you know more about what you are dealing with at this point.

Two very pale dots would not concern me in the least. It may not even be ITP-related.

i noticed that i get them after a hot shower??? dont know if hot water makes petechiae appear or worse or brings it on somehow. but they are gone within a couple of days. ive started taking vitamins c, b complex and a multi dont know if it will help.. but it couldnt hurt, plus i guess i'd have to take it for a while i dont think it would be very instant..

Ann:

What are the two new drugs which work for the majority of people and have few if any side effects?

Thanks!

The TPO drugs, eltrombopag and romiplostim.

Stop stressing. You shouldn't fear about leaving the house with ITP - it's not that serious illness.

When my counts were lower a little over a year ago, I would also get petachie after taking hot showers. They would go away by the next day. Try not to stress to much as you have made it all these years with your ITP. It could be the stressing that is making you worse. When my platelets were under 10 I would still go places and do things.

yes thats the same as me i get them after a hot shower then they fade the next day but they have stopped appearing now even after hot showers i definitly think stress made it worse, but thanks to this site i have been feelig a lot less stressed about it. the thought of travel and counts still makes me nervous but from what i have read soo many people have travelled and more with their low counts and been fine that has definitly made me spring back into normal calm
i did go out for dinner the other night though and i was too scared to finish the vodka apple my cousin bought me incase i was going to make it worse, thats something i have never worried about before. same as having foods with garlic in it or tomato. and i was scared that when i was lying in bed that i was putting too much pressure on my head so i would sleep sitting up, hahaha thats how bad it got its embarrasing to admit coz now i feel like a goof! but i have done pretty well in 11 or so years and ive only had one freak out haha

Vodka apple sounds revolting but it would have been fine. And I love garlic bread. Can't get enough of it.

So when are you going to get a platelet count done to put us all out of our misery?

it was cloudy apple and lime i thought it would have a nice tart taste like a granny smith but it was more sickly sweet like a cinnamon apple pie taste and the lime was not a very good idea it was a little blah!

ok, well pleeeeeease dont think im being silly, but i have decided to go on a health kick! i want to lose some winter flab befroe i put on this years winter flab and because i havnt had the healthiest diet lately (including no propper exercise) i've been a lazy bones, so i would like to do my health kick and then i will get my blood tests. i know that the health kick wont make any difference to a platelet count or anything but it will make me feel better, at the moment i feel a bit like that vodka apple lime :sick: pretty drab whch winter does! hahaha so that's my plan.
at least then if my counts are low as in under 10 or 20 it wont feel as bad if i have been feeling good! haha ok my logic is different to most people. its much more advanced! haha joking i can just imagine your expression reading this would be :huh:

Hi Mel- What I'm hearing from your story is:

"i was more afraid of all the blood tests and needles than the actual itp really freaked me out i had panic attacks everytime i had to have a needle. they then put me on..."

I'm thinking that you might be imagining the worst if you go to the doc and get a CBC. And so are doing anything to avoid it. Maybe you are fantasizing that its going to be like you are 12 years old again, and everything will spiral out of your control like it did then? (tell me if I've got it all wrong, that was just my impression)

If thats the case, you are older now and things will be different- REALLY! You will begin to get experience taking charge of the situation. It can be hard for a young person in their 20s to stand up to a doctor, but you can find someone you like. Plus find a lab that you trust.

One way to take charge is to decide in advance what you are willing to do. For instance- I'm willing to get my plates checked with a CBC but thats all for now. Thats what I do to help me stay strong and not be pushed into anything. Plus finding a nice doctor helps tremendously. Whatever happens, I can pretty much guarantee it won't be as bad as you are imagining!

Also my lab has started using a needle called a "butterfly needle". Its so different, honestly it doesn't hurt at all! Its a small piece of plastic shaped like a butterfly that has a tiny fine needle attached and it connected to a long flexi tube. It is amazingly painless- something you might call the lab and ask about. good luck!

-poseymint- you hit the nail on the head!!!! i AM totally imagining the worst and i am afraid of everything spiraling out of control again! that is exactly what is stressing me out!!!!!! it's not only the platelets it's other problems that they "could" find it's terrifying. and also REDICULOUS! i have been thinking about the bad too much.
you've pretty much read my mind!
needles are'nt half as scary now, ive grown out of that fear at least haha
but yes i have to admit, i'm procrastinating!

Baby steps, girl, baby steps. Posting and talking about it is a good baby step! Good for you, you're on your way! Plus your posts are hilarious! Love that you have to lose weight before you get your platelets checked! haha so funny. I have to lose weight before I go to the gym, my friend has to clean her house before the cleaners come, but thats a new one!

Hey, I understand about procrastinating! I had low platelets for 2 years and didn't do anything. I was in denial plus didn't want to pay to see a hematologist. I was going to a clinic and they ignored it too. Until I got a call from a hysterical nurse saying my counts were 6. I said you mean 6 thousand? she said, "No, 6 platelets!!"

Well, I knew that was wrong! But she really scared me with talk about brain hemorrhage. I felt faint and thought this is it, so ended up going to the emergency room in an ambulance. Got to ER and the doctor just looked at me and basically said, "nothing is wrong with you, you're fine." They gave me prednisone and sent me home. The moral is: if I hadn't of procrastinated and had just gone to a real doctor, it would have been sooo much easier and cheaper. It took me two years to pay off that little trip to the ER!

Real story:

There was once a woman on here who was told her count was 1. She was freaking out about getting her next CBC because she thought they might suck that one, last platelet out with the blood draw and she would have none.

The things people think!

Okay, Melasund - stop procrastinating. I challenge you to a blood draw within the next 10 days! Double dog dare ya!

Sandi I couldn't help but chuckle.

You're allowed.

hahah sandi, i have thought that once, when i was slightly anemic that time and i had to go into hospital, the registra doctor wanted to take vials and vials of blood and i kept tinking she was taking all my platelets away coz at the time i was at my bestest count ever at 16k withut treatment! (well pesides that super multi i took the day before) duno if it really worked or if it was coincidence. but i wanted to hold onto those platelets! haha

poseymint- yes baby steps. very miniscule baby steps i'm planning to get my platelets checked, thats a lot more than i would've thought a week ago. hahaha i did say mniniscule baby steps.
my weight goals were actually something i wanted to do for a long time, the reasoin i want to do it befroe hand is coz if i get a low count result lower than i would hope for like say 2k again i know i'll never get off my ass after that i'll slump into a pooper and feel sorry for myself. i just know i will. i'm such a baby! on the other hand it could be a pleasent surprise! i dont know but i want to do it anyway.
sandi- i had my cbc goal set for "within the next 3 months" and i have told my mum that if in 3 months i still havnt she's going to drag my butt to the dr. even if i go kicking and screaming! (well she's guna make the appointment for me so i cant get out of it) which actually makes me think, my "within 3 months plan" kinda doesnt make sense now that i have typed this out loud. but it made sense in my head. hahaha it's not quite 10 days but ya never know all this talk i'm actually getting impatient. a couple of times now i've gone yes make that appointment, and then chickened out.
i'm such a sissy hahaha

oh yeah and p.s. poseymint- my friend was fenaticly cleaning her house one day and i asked her "whats with the cleaning rush?" and she said "i have to clean the house because the cleaners coming today" :huh: hahah i dont understand, but i understand the gym thing, theres some nice looking boys at the gym, who wouldnt want to look good for that? haha

I'm going to tell myself in an hour that I shouldn't have waded into this....but:

You haven't been tested since you were 12. It is "massively freaking you out," "turned your world upside down," "panicking like it's the end of the world," and you are "too scared to leave the house."

But you won't go get a simple blood test? Really?

it has been massivly freaking me out! i have stressed so much about it its constantly on my mind and as a result i have got petichiae appearing,

i have to say itp has stopped me from doing a lot of things my whole life was turned upside down

now im too scared to leave the house i have been this way since i was 12

i feel like im watching the world pass me by and i feel like i cant be apart of it my friends

i'm panicing like its the end of the world!

i was scared that when i was lying in bed that i was putting too much pressure on my head so i would sleep sitting up

Mealsund, you're going to make it in for that blood test. You just need to get in control of your own life. I know you are very young (about 22?)--and you have made it all these years doing fine. Even if you don't want treatment, you should get them checked once in a while to see what works for you and what doesn't: In the way of diet, stress, food, exercise, etc. Take on Sandy's double dare!

DeeDee Marie wrote: Mealsund, you're going to make it in for that blood test. You just need to get in control of your own life. I know you are very young (about 22?)--and you have made it all these years doing fine. Even if you don't want treatment, you should get them checked once in a while to see what works for you and what doesn't: In the way of diet, stress, food, exercise, etc. Take on Sandy's double dare!

I agree. It's not worth the stress, do what you have to do to get a count. If it's the process, ask your doc for an anxiety med. If, instead, it's the fear of a bad result, play the old Dale Carnegie game: assume you are going to get a bad result, go in for the test and you will either get what you already expected or be pleasantly surprised. No (or at least reduced) bad news.

Gort--Very well said! Good advice for us all to follow.

-gort- you are absolutley right! i have read some of the threads from posts and seen that you have been travelling, hiking and rafting and bungee jumping!!!!! that to me was so inspiring and you're right. I'm just being a wally now, it's rediculous! I'm going to do it i'm going to make the appointment tomorrow! (will have to be for thursday though thats my free day) i could try for tomorrow but it costs money and they dont bulk bill on w/e :S but you've talked me into it, no more waiting. challenge accepted!!!!!!!

-dede marie- yes i'm 22 i turn 23 next week on the 4th!!! so hopefully i get a great platelet birthday surprise
thank you everyone for all your supports and giving me the push i needed i will let you know tomorrow when i have booked my appointment.

Time is a ticking....nine days left.

I totally wouldn't recommend this, but I'm 25..and I have become so frustrated with the whole ITP and stressing about my counts so much that I finally told myself I am going to have the "out of sight, out of mind" attitude towards it. I have been playing in a women's soccer league for over a year, and have been fine. I take blood tests when I feel my ITP symptoms coming along, not every week as my doc. would like, but I figured I would preserve my veins better this way since I have had chronic ITP for the past 3 years. It has really put me at ease. My suggestion however, would be that you read all the information about symptoms and warning signs so you can recognize when you need to do your bloodwork and see your doctor. This has helped me, and put me at ease. Also, I can avoid Prednisone this way since that is all I have been prescribed unfortunately.
PS...I was perfectly healthy throughout my pregnancy and my son is so healthy! And I plan on having at least one more, so don't let the ITP deter you from that...you'll regret it

well i rang but for some reason on w/e it closed at 12. so i'll try again on monday.
i have been the same -charlotte i have the out of sight out of mid attitude.

hope i dont chicken out by monday, i just wana get it over and done with. my mum is on the fence about it. my dad says go for it.
i know a lot of you think that its a simmple blood test, but once i do this i cant undo it.
deep breaths.. i'm sorry for my drama. i feel bad becasue you do this all the time, and we all feel scared about our platelets sometimes.

melasund, PLEASE try to RELAX. I know it is easier said than done, but STRESSING out over this ITP crap does not help matters. Have been there. If I have read this right, you should have had the test done. So, how did it go??

i have made an appointment for monday. i was going to wait a little i have to say almost chickened out but unfortunalty i fund a breast lump and now im worse in the stress department. will get it checked and also do the platelets and everything on top of that. i cant even discribe how scared i am feeling right now! not a very happy birthday surprise i hope it is nothing and everything is ok but i feel sick thinkking about it