10.13.2009

Steroid update

So, I haven't posted very much at all about my kidney issue and the steroids, mainly because there wasn't much to tell. It started off complete different than my previous round of steroids. I wasn't swelling up or going crazy. Was it because of all of the preparation I did before I started? What was the difference. I didn't have any answers, but I was cautiously optimistic that I would escape the awful side effects this time. Unfortunately, that doesn't seem to be the case.

Since we got back from our Chicago vacation, I can see a drastic difference. I can tell because my clothes no longer fit very well. My bras feel like corsets...very very tight corsets. The sheer amount of fat around my torso and neck feels like a 20 pound wet towel that I can't take off.

I'm frustrated by it all, because again, it seemed to happen so fast to me. I think I might be a little delusional too :) I have more than one chin right now, and I'd like to get rid of it. The crappiest part is that the weight doesn't start to come off until I'm nearly done with the steroids, and based off of my latest labs, that ain't any time soon. I started out at 5700mg/24hrs. After 8 weeks on steroids, I'm only down to 5100mg. I have to be <500mg in order for my doctor to be comfortable to wean me. Not good news for me.

There's no light at the end of the tunnel here. I'm not seeing a lot of positive things to look forward to in regards to this. The only time I can forget about it is when I'm playing with Izzy, or when I'm doing the photographer thing..that's about it.

Work is the worst. There are some days when I feel so uncomfortable in my own skin. I wish there was a way to transport myself directly from my car to my desk, where I could remain the entire day. It's horribly uncomfortable to feel as though you can't present yourself in the manner in which you're accustomed. No one understands this. I swear, if I hear "it's not as bad as last time", or "it could be worse" or something like that, I'm going to go CRAZY!!! I know that people are trying to be helpful, but it has the complete opposite effect in my head. It's like somehow they've taken away my right to feel crappy, and it's so unfair. It's as if my emotions and feeling regarding this are not legitimate. They have NOOOO idea what it's like for me every day, waking up to see this big round face in the mirror, not being able to fit in my clothes, going to work and not being able to perform as I did before because my brain is full of cobwebs. I read this article today by a woman who was put on driving restrictions when she was on steroids (at a lower dose than me, I might add) because of disorientation. Well THAT freaked me out.

I don't know what I expect, or what the next few months are going to be like, but I think writing about it is therapeutic, even if it's just nonsensical ramblings.

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