Okay so as most of you know I suffered from 2 strokes at the end of July caused by yet another "syndrome" (no known cause) that is treatable with steroids and calcium-channel blockers. At least they know how to treat this one! I was started on high doses of Prednisone in the ICU and I have spent the last nearly 3 months manic and crazy out of my mind while the drug keeps the vessels in my brain open and calm, not squeezing open and shut like a kinked garden hose. But that is about the only thing that is calm about me! Oh it has been a very tough drug to deal with. First off my Fibromyalgia pain all but disappeared! That was awesome...to say the least...and I have truly enjoyed every pain-free moment. I have adopted a yoga routine I practice daily like religion after my morning walk with the pups in hopes that my muscles will be stretched and flexible when the stiffness and pain return. The first week home I worked myself into such a frenzy that my mom and husband put me on 24 hour-do-nothing surveillance because I would not sit still. Then there was the awesome 'Roid-Rage freak out on my husband at the mall. Oh that was not a pretty one. So while my body has been in "recover" mode I have had this false energy pumping through my veins, giving me the illusion of verve and vigor that I do not own.
I have slowly dosed down and with each step regain a little bit more of me back. The pain is returning, the frantic manic is calming down. I am becoming reacquainted with a long lost friend named "oh well" that has been on a very long vacation! I really need that friend to keep life in perspective and am overjoyed she is returning. But my goodness, have the other side-effects of the Prednisone aged me! My immune system was so attacked, my white blood cell count so high that after 4 viral flares in 2 months I was finally put on daily viral suppressive therapy. I have gained a generous gobble of gut weight and my face, as you all have heard me bitch and moan about endlessly, looks like a fleshy round volleyball. I developed a long and dark mustache, have horrible tremor-like-shakes, am having to take a muscle relaxer with breakfast to stay sedate enough to function without spiraling into some hyper-freak-out and a sedative to sleep. I spend each day in an ADD obsessed frenzy, starting four projects at a time but never completing much of anything. Oh if you take the "saving my life" out of the equation the benefits do not outweigh the drawbacks. But that "saving my life" thing is something you cannot put a price tag on so I will slowly continue to titrate down per Dr.'s orders and be grateful for the Fibromyalgia pain that is rearing its ugly head because it means I am that much closer to being off this drug.
And then today the fatigue hit me like a ton of bricks! Ironic because I have not had a sip of coffee since my strokes and today at breakfast I ordered decaff, craving and missing it so bad I figured screw it, I know it still has 30% caffeine, but I want it! I assumed I would be wired but no, I have spent the whole day in a strange Fibro-fog of exhaustion that is quite foreign to me! Familiar yet foreign at the same time. Like a long lost friend that moved to another country and you have forgotten what it feels like to be around that person. I stumbled around the house knocking my extremeities into every imaginable sharp corner or edge and have just been d-r-a-g-g-i-n-g... So another day in the life of this Fibrate comes and goes. New challenges present themselves, new struggles, new opportunities for growth and adaptation, and I will just keep on keepin' on because what else am I going to do?
Thanks for joining,
Leah
Wow, you have been through a ringer the last few months. On the last visit had with my RA, he said fibromyalgia is normally a sign of something else going on. I thought REALLY? I have never take any kind of steroid, but have been meds that has effected my weight. Here I am 5'5" and at 180 again after lost 15 pounds. You are an inspiration. I never knew what strength I had until getting fibro, extra anxiety, migraines, etc. Fibro fog is like its own little creature, the other day I just stared off into space, no telling how long was doing that. My BF is very sweet, we get laughs out of my fog moments. I wish you the very best, take it easy, that pain coming back has got to be hard. I have had symtoms for three years now and have had two free pain days. So I am so glad to hear someone had a period of no pain. I keep moving, keep my faith, realize we are all in this together. XO Sheila
ReplyDeleteTell your RA to find out what that "something else going on" is! My neurologist says the strokes had nothing to do with Fibro but i don't even know what his feelings are on Fibro and they don't know much about it anyway... Oh yeah you will find strength you did not know you had! Keep laughing sweetheart, it is the only way to survive. Oh yeah, that and a good support network like The Fun House ;)
ReplyDeleteBlessings,
Leah
Bless your heart! You have been through so much! I too have fibromyalgia along with very high blood pressure. It won't come down, because I'm always in pain. We go through so much, but our humor sees us through it. Big hugs!
ReplyDelete