my struggle with prednisone

I have been debating whether or not to post this because of the nature of the topic, but this is my only form of a journal right now and I feel like I need it documented. So here goes.

My health has been on my mind a lot lately. My current state and the future. I am tired of dealing with ITP, though I know it's probably something that I am going to have to deal with indefinitely.

I have been on a medicine called prednisone for some time now, and though it is effective  the side effects are not good. I have been contemplating trying new treatments. But they are more extreme than just taking a couple pills everyday. And that scares me.

Prednisone does what it is supposed to do. It tricks my body into thinking it is some foreign substance and attacks the medicine instead of my platelets. As a result, my platelets increase. That is always a good thing. And for me, the higher the better!

I have been on Prednisone before in high school. I know the side effects all too well. As soon as I was put on it, I started bracing myself for them. This time though I feel like the side effects have magnified. In short, it's not fun.

Prednisone makes your face puffy. I don't know if it's water retention or what, but I feel like a chipmunk. The technical term is called moon face. My cheekbones? What little definition I had, have disappeared. I feel like it took years for the puffiness go down after I was off of it the first time. I am dreading the fact that it may take just as long on the second go-around.

Prednisone makes you constantly hungry. All. The. Time. Thankfully I haven't gained too much weight from this. A lot of people, who don't know the side effects, are taken off guard and as a result gain 20+ pounds. Some people say that you gain weight on Prednisone simply by breathing, which I totally get. I don't know what it is. You just blow up like a balloon. It also makes you break out and my hair has thinned somewhat and has gotten stringy... All side effects.

Prednisone also messes with your mind. My husband is a champ for dealing with me on this part. You become moody and irritable (Sorry Scotty). Thankfully this hasn't affect me too much, though I do notice it from time to time.One thing though that has taken its toll on me is the ability I have to focus and to remember things. I feel like I am constantly asking for reminders or it takes me a little bit longer to go through an email. I also seem to zone out mid conversation with people.

I am constantly tired. Like I can't even function tired. I know it's a combo of the medicine and the platelet fluctuation, but it's still not fun. I don't get anything done. Sometimes I'll get home from work and just sleep. Seriously Scott's a champ for putting up with me and never complaining.

This time around I've notice another side affect that I didn't have before. My hands sometimes get super shaky and weak. Like I try and hold still and I just physically can't be still. You know, like how elderly people get? That's the best way I can't describe it. My hands sometimes just shake.

Sounds awesome doesn't it? I know you're thinking, "sign me up" right about now.

So you can see why I want to get off this medication. The problem is, my platelets seem to fall just as soon as I stop taking it. So the doctor wean's me off of it ... my platelets go down ... and then they put me back on. It's a viscous cycle.

Like I said, though, the next options might be more drastic. I think I am almost there, but it's still scary thinking about the choices in front of me. Not to mention the insurance and money factor being calculated into it.

Anyway, I really don't know the point of this post, except documentation. We are just trying to figure out the next step ... one that hopefully will be a long-term solution.