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bad bad bad day

Posted May 22 2008 12:00am

no energy. so weak i can’t even talk today.

no sleep last night. AWAKE. ALL. NIGHT. in awful pain all night. body aches, night sweats. i feel like i’m back at the beginning —but why? i am DOING EVERYTHING RIGHT!!!!!!!!!!

last night was hell: as soon as the body aches continue for hours, the chest pains follow and then i’m awake all night wondering “is this it? the big “it”??” my heart was doing somersaults in my chest. who ever knows what it is. at any given time it could be good or bad flutters, anxiety, or worse, arrythmias. well, we’ll find out tomorrow when they “interrogate my device” which means they check my pacemaker to see if it has recorded any funky rythms.. and not the good kind.

the best way i can describe what i feel is that someone’s sitting on my chest, my heart is fluttering, completely naush, feel like i’m gonna faint everytime i am standing up and every muscle in my body feels like i went to the gym yesterday and did weight training for like 10 hours. the worst part of all of this (always)?? i’m really scared. it’s all unclear as to why this happens and i never get answers. it’s like a circus calling around to my docs when this happens. although, my one doctor got on the case and told me to meet him at his office first thing this am and we’d assess whether or not this was an “acute cardiac” problem and i if i should get to a hospital (boo). so, after hours at his office and yet another needle stick in my poor little arms (my right one is out of service for the next couple of months because all of the veins are collapsing), i left his office with a script for steroids.

i have avoided taking steroids for so long yet i had to take them for awhile back in jan and finally FINALLY came off (which was really hard to do physiologically) on May 1st. I was so proud! I was soo happy! And now, here I am again, absolutely desperate just to feel better, just to have some sort of promise that i may be able to leave the house this upcoming sunny weekend; so down the hatch go 6 pills of pure steroids. ugh. what does the doctor think? he doesn’t know. he has not a clue what is happening. usually when these things happen (all too often) my blood tests come back looking perfect. it’s sooooo frustrating. but he does know that steroids often make people feel better.

been on the couch all day. on a positive note my angel was with me all day today so i had company. it makes a huge difference to not be left alone with your thoughts when i feel like this.

prisoner of my body, day 400.

off to get the Kicker “interrogated” first thing tomorrow morning and then straight to columbia to see the heart transplant doc. maybe she can get to the bottom of this. that office scares the sh*t out of me. it’s like a supermarket… the check-in desks literally all lined up next to each other in the transplant wing “lung” “kidney” “liver” “heart”. yikes.

wish i had better news for everyone. let’s hope the roids kick in and tomorrow i’m better. ew steroids.

until tomorrow…..

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