Showing posts with label platelets. Show all posts
Showing posts with label platelets. Show all posts

Monday, March 30, 2015

FRANKIE SAYS RELAPSE

I jinxed myself with that last post didnt I...
After being steady for a couple years, a month ago my levels plummeted down to 17k. The kind of numbers I had when I was first diagnosed several years ago and in the hospital. When you live with an illness you get to know how your body works (and when it isnt). I started having bruising in places not normally seeing blemishes, such as my arms. The bruises on my legs didnt go away after a day or two as usual, they stayed for over a week. So I made an appointment with my hematologist and the CBC confirmed what I already suspected. I also suspect the bad stomach issues I had weeks prior kicked off a response which caused the relapse, and we're working on that now. Especially since there's been a connection with H. Pylori and ITP.

There is good news however (for now). Once again I am also back on the good ol' Prednisone, which I have renamed Satan's Vitamins™, and the week after I was 17k I skyrocketed to 120K. Weird I know. It's going down again as we lower the steroids, which is to be expected. 102K last week, so we'll see what this week brings. 

I will say one thing, this time I am so much more prepared. The first time diagnosed I was terrified since I had no idea what to expect. But I know what ITP is, I know what Prednisone is like, I know what infusion and bone marrow biopsies are like, and so on. The mystery of what happens has become less mysterious, and more about taking care of myself- especially since I know I can only control how I feel and not what my platelets do. So I'm eating well (gluten/dairy free), making sure I take moments for myself throughout the day (especially at work) to check in with how I'm feeling, politely declining social things that may take too much energy, and remembering that it's the Satan's Vitamins™and not me. PLUS, I'm still making plans for this year. ITP is not going to put everything on hold like it once did, I will simply live with it, as I always have.

So the best thing, really, is to relax -while I have this relapse.


Sunday, January 4, 2015

Escaping the Downer Bubble

 

Updates! Well, there arent many. The year before last my hema told me I would just see her when I would need to. This was because appointment after appointment would yield the same result, levels from 90-110K (mostly 90's). This is great, but no remission. As I write this I have a couple tiny "fingerprint bruises", as I call them, on my arms and legs.  Still-  I'm happy to have been stable in the same range for almost 2 years. 2015 will be year FIVE of living with this illness, and so far I haven't let it alter my plans the way it used to. I think like anything life-changing event, you adapt.

I used to avoid making big plans altogether. I'd get all Debbie Downer on everyone and say things like "well you never know what can happen" or "whats the point I have bad luck" (I used this one alot).  Cut to 5 years on and you haven't done much because of fear. SO, I've recognized the patterns that my "Sick Person Mentality" has been a challenge for me. Just because this happened and changed alot, doesnt mean I should treat my future like it's Jake Gyllenhaal in Bubble Boy. Thus 2015 will be about believing in plans again! We'll see how I do.

 Trying not to treat my life this way