Saturday, November 13, 2010

Over the last week, the cumulative effects of steroids have made themselves apparent. I've reached that unique point where the effects of the steroid taper are clashing with the last five weeks of my adrenal glands becoming dependant on methylprednisolone. It's not pretty.

I feel like that zebra at the back of the herd being stalked by a pride of lazy lions. You know the one. She's got a peg leg, eye patch, and slight case of mange. She's the one desperately trying to run into the middle of the herd so one of the more sickly specimens gets caught, except she's pretty close to the sickliest zebra in the bunch. That's how I feel.

My skin is stretched tight from fluid retention, so much so that my neck has rings much like the Michelin man. I've managed to stave off major weight gain by hitting the treadmill five days a week for extended sessions and to date have only gained two pounds. Regardless, none of my pants fit because my midsection is swollen from steroids. Muffin top reigns supreme.

The muscles in my legs are a bit withered. I can no longer get up from a squatting position without pushing off of, or pulling up onto something. I dread dropping things because I'm never certain whether I'll be able to pick them up. My arms are noticeably weaker and I can't carry as much. I'm having trouble getting out of cars. It takes me a bit longer to walk to class and I pity the drivers who have to wait on me to cross the street. Even at a hustle, I'm slower than the slowest crosser. I've been using my disabled parking pass more when I run errands.

Yesterday, I asked Chris to accompany me to the grocery store because I didn't want to do it by myself. Normally, I love grocery shopping alone. Yesterday, I dreaded having to load all of it into my car. It's not that I can't do it. It's the fact that it's taking me twice as long. I'm also starting to feel a little more aware of my appearance. I'm not embarrassed that my face is a bit distorted, or feeling otherwise vain in that regard. I'm more aware of the side-ways glances and people quickly looking away when I catch their eye. It makes me feel obvious.

I know many of my transplant friends can relate since we've all done the steroid dance a few times. What I'm feeling isn't new, but I am ready for it to be over. My next steroid taper occurs on 11/17 when I start taking 64mg of methylprednisolone every other day. I'll see my transplant doctor the first week of December and she'll decide on the next step. I'm hopeful that the GvHD remains in check and I'm able to taper once again.

7 comments:

Ronni Gordon said...

I'm so sorry you're going through this. And yes, I can relate.

As you know, it will pass, but it's a bummer going through it. Sounds like you're doing all you can do to minimize the effects.

Are you trying to work into your daily routine things like getting up out of a chair with no hands? I think that kind of thing helps.

lisa adams said...

Nothing unique to say except I am sorry, and hope that you will be able to taper on schedule. Sending you hugs.

Nancy said...

Your steroid dosage is higher than I thought. But, it's doing its job, so hang in there girlfriend. Glad you are on the tapering down mode. It's just a matter of time and you'll be off it! love ya....

twentysomethinggirl said...

((HUGS)), Ann. I think strangers only look at you because you're so lovely. Next time, give them the swollen finger ;-)

stinkerbelle said...

Every thing you described are my exact symptoms and with me, it's not steroids...it's old age! LOL!

In all seriousness, I know things are difficult but hang in there, the next taper isn't too far away and you'll be better soon. This is just another bump in the road of this journey you are on.

Sending you love!
Amanda F.

Ann said...

Thanks, everyone!

Ronni, I try not to use my hands when I get up, but more often than not I forget, or brace my forearms against my thighs and push off. I've been doing strengthening excercises with my legs and arms, but you know how it is.

PJ said...

Of all the side effects you describe so well, I relate most to the muffin top. The only pants that fit me are the ones that ride my hips, which of course causes the dreaded muffin top. Today I sandwiched my way into a pair of traditional "mom" jeans, the kind that have a waist. I feel like a sausage.

This too shall pass. At least I hope so.