im not going down like this

In the the month or so while i was in the hospital i lost so much weight. i had let my condition get so bad i went from 145lbs to 105 lbs and at 5ft 7in 105 is not healthy. The dm had eaten my muscles so fast. I returned home and was basically paralyzed i couldnt lift my own arms high enough to brush my hair and i certainly couldnt walk or get up from anywhere on my own so isat there and stred blankly at the tv or out the window. I didnt want to bother the working normal people so i sat ther and cried and thought and cried some more. I was told i had to eat pureed food cuz the muscles in my throat were so weak they thought id choke on chunks of food. Personally i found it harder to swallow the pureeed food because it would stick to the back of my throat and was soooo annoying. I didnt mmind the taste but i found small bites with someting to drink was easier. neways after 6 months of being pretty much paralyzed i had had enough. Im not going down like this i thought and i began to feel anger and the will to fight. I started to do small things to gather my strength. Small steps help! small steps help! and my journey with learning to cope and find ways to get around and get things began.

meds make me nervous

I hate taking my meds. Which one? all of them. They prednisone im on right now is only 15mg a day which some might say is alot but to me its actually not too bad as compared to the 140 mg i use to take. It seems though that my body isnt so resistant to the jitteryness (is that a word) anymore. I get anxious and jittery just thinking about taking my meds. i am soooo feeling that now. Then the Imuran(chemo drug) makes me sick. What a combo. I feel use to the combo yet not. They have also started to upset my stomach easier now, which they now give me a med for. Weird huh? a med to help my problems created by meds. aghh! Well @least im healthier than before. these meds sustain me like water to a plant. gotta c the cardiologists in a bit and they are gonna do an ultrasound on me because I've been experiencing heart attack like symptoms. Hope all goes well. I want the results to come back normal but that means I wont know what is causing these feelings and that is scary and frustrating. I better get ready now cuz I take a while. ( the pace of a snail) LOL!

New to this

Well I always thought that this would help me cope with dermatomyositis so here goes... I am 27 and have lived with DM since i was 23. I have seen both extremes of this condition from near death to what I think and hope is now remission. I want to be able to help and connect with others who have DM. Maybe you just want to know about DM because someone you know has it. I researched alot when I was first diagnosed and blogging wasn't really in so i never really looked to that for info. however now is different. Living with this condition has been really "different". I haven't and will never give up. Even though sometimes I admit I have felt I just couldn't anymore. I still remember when I didn't know what was going on w/my body. I was very active. I was a bartender and horse trainer and attended college, but my husband than new boyfriend didn't want me to work so I quit. I began to feel weaker and weaker. I didn't want to show it. I would hide my weakness from everyone especially my boyfriend. I thought I was going crazy or my body was getting lazy from not working anymore. I look back and think "how dumb was I?". It started as minor weakness and skin problems and ended up to not being able to walk at all. Yet still I thought I needed excercise. I think I was in denial that something was really wrong with me. My mom demanded I see a doc and they had no idea what was wrong but put me in the hosp. asap I'm glad they did because my cpk or ck levels were so high I almost had kidney failure etc.... several weeks and two muscle biopsy's later and BAM I was diagnosed w/the scariest thing in the world.Something I had no idea about,hell it was something not even the docs knew about.(which was not comforting) My life had change dramatically and depression was def. in full swing. 2 be continued...............