new and clueless like most

I should say that I was originally diagnosed maybe 3 yrs ago but with carefull watch over my cbc and an eye out for petichiea and such I wasnt really concerned with their 'idiopathic' as I was told it meant they didnt know.
I have another medical issue that I am battling so I chalked the bruising and fatigue to anemia due to that and continued on in my workaholic, hard headed fashion. Well, about 3 weeks ago I woke up with a burst blood vessel in my eye and a bloody nose with a headache. Freaked me out a little, so I called my doctor. They brought me in, did their blood draws, increased my iron, and sent me on my way. Well, the next day a harried doctor called me exclaiming that he would like me to go directly to the er. My platelets were at 15 thou. He didnt seem to be familiar with what was going on so I still continued to look at things casually. End result of emergency room visit was my stay in hospital down to 10 thou. Iv platelets, continued dropping to 9 (which they basically said wasnt really anything, as I read somewhere around here too) so they started me on prednisone. They released me from hospital a week ago with 22 thou and told me I could return to work in a few days on conditions I got my blood drawn twice weekly.
So, I return to work, food service industry. I am there a total of two hours before my doctor calls me and orders me to leave immediately and I will be out untill further notice. My platelets didnt budge after my leaving the hospital. So here I sit, researching, freaking, cleaning my house, freaking, and wondering 'when is it all gonna go back to normal?'
My family is slightly overprotective of me as that I tend to have a very high tolerance for mishaps with my body. Many times my refusal to cave to weakness has landed me in some near end situations. So, here is my dilemna, what limitations should I set myself? I am eager to return to work, but it is kin to a contact sport which I am being told is not a great idea. I have small children so a good deal of activity is required at home. But where should I draw the line to be safe? Too far is not an option right now.

Welcome to the boards
I'm glad you could keep acceptable numbers for so long without treatment. Prednisone isn't working huh? I have that problem too! You work in the food service industry? Me too! I'm a waitress at the local Bob Evans. When I was first diagnoised I took a 2 month leave. My counts went as low as 1 during that time. Rituxan has brought me back up to an acceptable level and I'm back to the old grind! The limitations you set for yourself are totally your call. You mentioned a bloody nose, does that happen often? Do you have any other active bleeding? All that has to be taken into consideration. How can you not have an active day at home with small kids!? You have to make your priorities and stick with them.

thank you so much for your response. Ive been kind of wandering about through the internet looking for some sort of friend with this mess. My family takes the doctors orders by face value and wont really let me do much. It is near impossible to be inactive, I still vacuum and clean. But the bigger ones wont let me wrestle with little ones and like I said Ive been pulled out of work.
I see you said in beginning you were out for two months. eek, thats terrifying to me. Im a bit of a workaholic/ overachiever in that department. My job requires a minimum 48 hour work week, with 90 % of that being on my feet and moving, lifting, etc...
Okay, I know to beware of extra petichiae (sp?) and any surprise bruises. They say to watch out for lightheaded feeling, pain of course. But as I mentioned, Im a stubborn girl. I tend to look at it as if its not broken, its not bleeding then shake it off, get back on the horse. My doctor scaring my family and me so I dont know what to do with myself. I want to be safe, esp if my counts are hovering around 20 so I dont endanger any time with my family, but I dont want to be overly cautious either. blaarggh, sorry, im a blithering mess sometimes (blame it on the prednisone ;P)

Hello. Are you seeing a hematologist?

Everyone sets different guidelines for themselves based on their situations. I never missed work due to ITP and worked with counts under 5. However, Prednisone did work for me so my counts would be good after a few days of it. I have an office job and while it's not dangerous (other than paper cuts), it is very fast paced and stressful. You have to do what you feel comfortable with; that can come with time.

As for cleaning and house work, I still did all of that. If your counts are above 20, you should be okay if you don't have any serious bleeding. Above 30 is considered safe.

Try not to freak. Very few people die from ITP. Hopefully, your doctor will suggest a treatment that works. There are still several of them out there to try.

You'll figure out your limits.

I was diagnosed before the internet so talk about clueless - maybe that was a good thing though. We moved to Japan a couple months after my diagnosis.

Good luck to you!

They say to watch out for lightheaded feeling

Who is they? and did they mention why to watch for that?

They is the hemotologists, and immune specialists I was already working with. I saw both daily in my stay in the hospital but unfortunately they all managed to give me pretty much the same impression, that they are not too familiar with what is going on or what to do. You all seem far more educated (even if it is just from life experience) on the subject than they are at the moment. And from what it seems they tend to be running on the dramatic end of the scale here.
All the above they said to watch for and contact them immediately because of interactions with the prednisone, and/or potential issues with the itp. I also am already obese, have extremely high blood pressure, and as I said, have to be near death to worry about anything physically. So Im thinking perhaps they are just trying to be better safe than sorry in covering all their bases and scare me a touch.
Its so relieving to see you others living so well and fully functional. I will say admirable even since when I first started actually looking into it I was very intimidated and still am a little scared, but much less so after reading of those of you that are in similar predicaments and live life as normal.

I have to say that I did live life normally and kept going. I felt horrible, I looked horrible, and my mouth had a mind of it's own (on Prednisone), but I was always running.

Like I said, everyone has different circumstances and your doctors might be taking your other medical issues into consideration.

My opinion is that your extremely high blood pressure may be a bigger risk than the ITP. Fortunately, that can be treated.

My BP had been high, too, but my GP doc and I found a good combination of medications to bring it down. Get a automatic blood pressure cuff to monitor it.

I battle obesity, too, but after loosing just 20 lbs, my BP is within normal, and as a bonus, my cholesterol and triglycerides went from "off the charts" to normal.

Very good point Tad Moody! High blood pressure is the "silent killer". For most people it takes 2 or more medications to get high bp under control.

What is being done about your "extremely high blood pressure" mommby?

Low counts and HBP are not a good combination.

They have me on just water pills for now, which the doctors and nurses all said arent really anything. They got distracted by my other issues and havent visited what to do with that yet. Outside of the hospital I was averaging 150/110 on a good day. Oddly enough my cholesterol is great they say.
I had a draw done yesterday and havent gotten a call so Im hoping no news is good news right now. But I have a doctors appointment tommorrow so that could also be why they havent called. dont wanna freak me out. Dont know.
The high blood pressure was only an issue once while in hospital, got up to 170/123, so perhaps being out of work is good for me at the moment.
Im going a little stir crazy and have snuck into work to do random chores but everyone around me treats me like a porcelain doll that should be wearing a helmet so I dont get too much accomplished.
I was reading other threads and I saw alot of you have had success with Rituxan I think it was and someone else brought up a drug Dem something. Im gonna look again and write them down to discuss with doc's if the pred still hasnt done me any good. I am prone to migraines (more than likely due to bp) so I dont know but Im determined to find something that can get my numbers where I and those that care are comfortable with me at it as normal.

Well, someone needs to deal with the high blood pressure. Soon. That can be just as bad as, if not worse than, your counts.

I have high blood pressure and my cholesterol is fine too. They do not necessarily go hand in hand.

okay, so just got back from visit with autoimmune. she put me on verapamil for my bp. it was only 150/106, i thought that was acceptable compared. she wont let me go back to work until after I see hemo and return visit her. my other snitched and told her that relaxation wasnt high on my priorities, so until I show a major effort to kick back they arent going to give me any breaks. he's picking up a home bp monitor and they are continuing the twice weekly tests. good thing I started christmas shopping early.
The counts are up to almost 40 thou with the pred, I guess I wasnt patient enough with it. and she thinks the hemo will start weening me off in another week or two. funny how I have more bruising now then when I was super low, but then I had more petichiea (sp?) but ive noticed thats fairly common. symptoms are wierd with this stuff i suppose.
Thanks so much for the reassuring advice and reading my babble though folks. Its easier to listen to others who are going through similar issues then those that depend on you.

mommby your bp of 150/106 is no way acceptable.
www.mayoclinic.com/health/high-blood-pressure/DS00100/DSECTION=tests-and-diagnosis
"Stage 2 hypertension. More severe hypertension, stage 2 hypertension is a systolic pressure of 160 mm Hg or higher or a diastolic pressure of 100 mm Hg or higher."

Your bottom number of 106 puts you in the 'more severe hypertension'. As I mentioned before for some people more than one medication is needed to get bp under control. I'm glad your doctor has put you on a medication and I hope it works! Next time you go in take your home machine with you so you & the doctor can compare it's reading with what they get in the office. Also keep track of the readings you take at home - make a chart & list date/time/bp/pulse - and take that with you when you go back so the doctor can see if the medicine is working.