Ok, so the past few days I've had some horrible side effects of the steroids. It seems like as certain symptoms get better others get worse. I did a bunch of research this weekend on Decadron *the steroids I'm on* and I learned a lot more about what I'm going through and even though I feel very alone---do you know anyone with a brain tumor?? I sure don't--I'm feeling a little less INSANE since other people on Decadron DO have these same problems!
My new problems:
**Water retention in my knees...I have granny knees...there is a bunch of fluid pooling all around my knee caps. It's horrible! The water doesn't have anywhere to go I guess?? And so its congregating around my knees and it makes it painful to stand/walk/etc. and it hurts all the time..even when I wake up in the morning! It never goes away! AHH!! I'm having muscle loss in my legs/joints which makes the problem more painful. The drugs do that. It gets worse as the day goes on, the mornings are best. But this is crazy...will it continue? Will I get water retention in other joints? Time will tell I guess....did I mention I have to be on this drug for MONTHS more??? I think I'm going insane...
**Weight gain...ok, everyone can say I'm a skinny ninny and could use a few more pounds. But this is ridiculous. I have what they call a moon face and now I have what is called a moon belly. I had gained about 10 pounds thus far as of last last month, no biggie....well, last week I gained 6! 6 in one week...its out of control...so I'm wondering...is this going to continue? The rapid weight gain...I can't keep up with this..a pound a day is a little much. However, my appetite is much more than it was a week ago, I ate WAY more this past week, so the weight gain makes sense...but why is my appetite more so than a week ago?? Hmm....I just want to know...am I going to blow up by 50 pounds? It's just out of control...my new goal this week....ride my excercise bike daily...hopeuflly will help with my legs and my weight!!
So the good news is I'm sleeping better and I've gone 6 days without AMBIEN..yeah..I finally feel tired again which is a wonderful blessing. I still don't sleep enough (insomnia, totally WIRED all the time) but I'm sleeping without drugs which for me is a HUGE deal. I do not like drugs being in charge of me..i like Heidi to be in charge. And right now..Heidi is not in charge. =(
Ok, so I just had to post about my steroids again....really this is just such a different trial than what I went through last fall. Chemo and all that was so hard in so many ways but it tried me in such a different way..its so, so very different what I'm going through now. How I pray I will come to learn what I need to learn through this challenge as each day I struggle to make it through the trial of the day. How grateful I am for the small miracles and blessings every day and for the things that are a little better each day even as other things get worse.
I'm so grateful for Kaylie who helps me with SO Many things (can you pick up your brother, can you get this out of the fridge as I can't bend over, can you pick that up, can you run upstairs and get that, I can't do the stairs, can you help me with this??? etc. etc.) And likewise my husband who when he is home does everything to help me and the children. How blessed I am with a supportive and loving family who are being such good sports about having a mom with leg problems...among many.
I hope you all have a great 2009 and don't take your health for granted!! I can't WAIT until I have LEGS that don't hurt...i can't imagine what that will be like..its been over a month since I've been without pain!
Love, Heidi
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