Dealing with the Unknown...

I have been off prednisone for six days now, and my next appointment with the Hemo is not until Friday. So far my numbers have been consistently in the 200's going up and down between 205 and 270 (last at 211)
Before my diagnosis (Evan's Syndrome) I was a very positive person. I could always find the good in something and make the best of it, I feel like that part of me has been MIA!

Increasingly with the end of my first round of prednisone, I find myself overwhelmingly worried about what 'may' happen without it....For example, my stomach has been upset and I've been a little more tired since stopping the steroids(two things which happened just before I was diagnosed).

Obsessing over new petichiae(or what I think are new) seems to be an issue as well. I hate to make myself sound like a basket-case, but this is what is going on. And I find myself nervous to engage in any romantic behaviour with my wonderful partner because I'm afraid of what that might bring on.

I suppose my question is; Did anyone else experience this and will I learn to identify problems without connecting everything to my ITP(and AIHA) and live a 'normal' life?

Also any advice on staying calm would be great! Thank you.

Hey DanielaG,
Time has a way of taking care of the obsession, sometimes you have to just take a step back and think of the changes that have happened. Steroids can make you feel pretty miserable and it takes a while before they are gone from your system.

Your life will return to normal and you will have that romance back again, give yourself a break and your numbers are great so no reason not to get back into life. I think everyone obsessed with looking for bruises and signs that ITP is returning after stopping a treatment but this will pass as time goes on.
Good luck to you and you are not a basket case, you are just being concerned and we have all done that. I found the best way to relax about the numbers was when you have a count done and it is good, just assume that it is still good until the next one, park it away in the back of your mind and go have some fun!!

Daniela:

Everyone deals with this in different ways, but I'll tell you the mind game that I played. Whenever I got a count done, in my head, I stayed at that same count until I had the next one done and was told differently. If I was at 125, in my head that's where I was for the next two weeks until the next CBC an I lived life accordingly. I didn't look for petechiae or bruises....stopped thinking about it. That was the only way I could keep going and forget about ITP and it worked.

If you know your counts are good, being romantic won't bring anything on. Your counts are great and this is the time when you should enjoy the break and live it up!

Thank you both, I appreciate the insight.
It may take some work, but thinking that I am still in the 200's sounds like a great idea. I suppose if I were still there I could go skydiving...not that I have a burning desire to do it, but that re-affirms that for now, I am fine.

Thanks again!

Another thing that works: Think of your life as a stove. It has four burners; two in the front and two in the back. Put your job and your boyfriend on the front burners (or whatever suits your fancy), and put ITP on one of the back burners. Let it simmer slowly and don't even stir the darn thing. Add spices to the ones in the front and give them all you've got!

Right now, you ARE fine and you will be fine until you hear differently.

Great analogy, Sandi!

I love that analogy too!

Re the romance thing, as per my post a couple of weeks ago in "social chat", I've been going out with my partner during the whole time I've had ITP (in some ways, it brought us together) and although the removal of my libido due to prednisolone interrupted proceedings on and off, there really hasn't been any problem there - and I don't let it get in the way (even when my count is as low as 6, which it is as the moment!). ITP is just a part of my life, it sure as hell doesn't define it

I went sailing when my count was 11......and I was on Pred for 2 months by that point.
I would KILL for 200!!! Live. It. UP!

One step at a time. Just one, not two. Today, you don't have to solve next week's or next month's counts. You just have to figure out what your treatment plan is for today, even if that is watch and wait.

In this respect, I sometimes remind myself that I'm not all that different from non-ITP'ers.