no weight gain

Well now I "get it". Ive been on prednisone for such a long time and never gained weight like everyone says your suppose to. Hey no complaints but I saw a doc a few weeks back and just by my explanation of symptoms and one look he sugested thyroid problems. the blood test came back that it was my throid-thus the no weight gain and possibly my heart problems. So they are running another blood test to check exact levels of thyroid and will than put me on meds for that. It has been said that once you get one auto-immune disease others follow. I was told the problem with my thyroid is also auto-immune. im not worried cuz i hope this medication will help with the rapid heart beats. My body is essentially in workout mode, therefore my heart rate is elevated and metabolism is high, so no weight gain. If the only side effect I had was no weight gain id be fine with that but the rapid heart rate really isnt fun. Anything I do I have to rest, not so much cuz im tired but because it feels like a heart attack. Im relieved to know my heart isnt causing this. Now I pray i dont blow up like a balloon. only time will tell.

thank you dm

I do not like my condition, but it has opened my eyes to things I never even bothered to look at before. I wonder what my life would be like if I never had DM. I was in car accident when I was younger and was told I should have died. Yet I didnt listen and continued on my path of speeding and feeling untouchable. I had the world at my tips. I really wasnt bad but didnt really care or enjoy the small things. I remember when i was learning to walk again after my diagnosis I stood outside and felt the sun on my skin after six months of being pretty much immobile. The feeling was wonderful, the sun and the use of my legs was awesome. So much of how I see people and life has changed. (For the better) I still do feel down sometimes and frustrated, but we all do i guess. its life sick or not. Part of me hates this condition and part of me thanks this condition. I have my beautiful son and a new outlook and for that I thank you dm. ;)

MRI RESULTS

well i saw my rheumatologist yesterday and my mri results on my legs were in. I had an mri done on them because i get alot of pain in them. My cpk is controlled and i think i am in remission yet the pain continues. So an mri was ordered and the results were that I had an extensive amount of fluid in the fascia of my legs-between the muscles. Furthermore I had extensive amounts of abnormal tissue. Those are probably the lumps i feel behind my legs. They concluded, however that the fluid was not drainable. So i ask my doc. what do I do now? Do I live on pain killers for ever? I deal with it? He is going to try to give me IVIG transfusions again to see if they help. I knew something was wrong. I am so in tune with my body and i can honestly say i have never been wrong when I feel something is wrong. So if your cpk is controlled yet you still have pain it is so possible and could be something like mine. i guess the dramatic change in my muscle structure because of dm left me with these results. i hope the IVIG works. Still waiting till monday for cardio results.

my heart

When the nurse tells you somethings not right with your heart and they want to order all kinds of monitors, you panic. It is something I felt was happening for a while and I told my docs about it. I went to the cardiologists but my appt to see my rheumatologist isnt till 2 more weeks then he will tell me what the results were. The problem is that since my appt. my heart is getting worse. The nurse says it jumps from 90 to 114 the 90 to 120 and so on in a matter of seconds. It is beating all over the place. I want to know whats wrong. Im scared and I hope that there is some pill that can control it or fix it or something. Im 28 freakin yrs old I shouldnt have heart attacks and heart problems at my age. I should be strong and all those things young people are, i feel old. This only happens to older people. Im angry and betrayed by my own body. Im usually positive but lately it seems like things arent controlled. Just when I felt i had learned to cope with DM and now this. How much can one person handle. Thats what i hate about DM is you cant control it.Its so freakin unpredicatable. when I called the one person other than my husband im closest to to tell them they said they had to go they were busy. To busy to hear that im freakin out and i think im gonna die! I probably wont but i feel like it because your heart is precious and when you lose power over the heart its bad. i tried to ignore it and believe it was in my head and to actually hear it is scary. Its like being diagnosed for thefirst time with DM all over again. I HATE PREDNISONE! Stupid drug that saves my life kills me too. HOW IRONIC!

THANKS

I never knew how much this blog would help. When I find others out there that share my same worries and experiences I feel like i'm not alone. others just dont seem to understand what DM is or does. They dont know the effects of the meds and the mental and physical aspects. I cry when I read other blogs with people experiencing the usual weakness, longing to do more, frustrated with the meds etc... All I can say is I understand, I know. I may not know them personally but I share their experiences. I am motivated by their testimonies and I want to say thank you to anyone out there that is brave enough to share them. I hope that my blog helps others and I can truly say that those blogs have helped me. Though it may feel like we are the only ones on the planet with this WE ARE NOT ALONE.

so far so good

Ive seen the high risk docs and the reg. ones but im afraid to see my rheumatologist, he was the one to diagnoseme and has been my doc since then. I know he is gonna be disappointed because of the dangers for me and baby. So far so good the docs say baby is fine, but with patients with DM there is a higher possibility baby could die even after its born. The nurses that check me @home weekly have said im having probs w/my heart. I use to be on over a hundred mg of prednisone and could cope but now 10mg gets my heart beating. I dont know if the DM has weakened my heart because it is a muscle and therefore can be affected. Does anyone know how long people with DM usually live for? cuz my fear is that as i get older & body naturally gets weaker and w/DM its probably going to be worse. I guess only time will tell. So far so good.

no words

Well im pregnant and have dm. the first time around i wasnt scared i felt id risk death to have a child and if God allowed me to get pregnant i would and I did. For some reason this time im nervous. They told me this could make me worse or better i already know all this. I know the risks yet i push myself i test it.You'll probably think im crazy for doing this again. I sometimes think im crazy. I went to the docs and the baby is healthy and has a normal beat. Here goes. Sometimes healthy women have problems or worse during pregnacy and sometimes sick woman do just fine. I did pretty good w/my son. My mind is racing. My legs hurt. I can only take this day by day. I will prove that anything is possible and dm will not take my happiness.

Its not nice to stare

I was always so concerned w/my looks, & i must admit I still do care but its not my life. I feel because im sick doesnt mean i have to let go. I remember putting makeup on @ the hospital, taking my own cute pjs and trying to look normal. If you feel good about yourself on the outside it helps your mind and i truly believe it helps heal the body. That & I didnt want people or myself to see me down. However, there are times I cant and dont care. The other day @the docs office was one of them. People were looking @ me like I was caring the ebola virus. My skin has dark spots and red rashes, and my veins in my arms are bruised from blood work, my muscles ached and I was limping along too. I usually have make-up on and its not so obvious i'm sick. Then as I was leaving, feeling like i was gonna collapse any minute i felt a stare. One woman was left in the waiting room and kept staring @me with a weird face. I couldnt take it, why wouldnt she stop. I hoped she would and than just like that I turned and looked @ her & told her "Do you know its not nice to stare?!" and walked out. I was so mad, happy that i finally told someone it hurts when your gawked at, & astonished by what I did. The look on her face was priceless. Most people dont say anything but I had enough. People dont realize that sometimes people have underlying conditions that make them overweight, too skinny, lose hair, have rashes, etc... I wish people werent so judgemental. Is it human nature or something we learn from others along the way? maybe both? Either way its not nice to stare.

thank goodness

I finally went to the doc had to tell them what to give me cuz regular antibiotics dont work on me. I usually need 1 0r 2 rocefin shots followed by whatever antibiotics they were gonna prescribe me. Had secondary infectins from a cold had sinusitis, bronchitis, and laryngitis. OMG! I felt I was gonna die. Twas the worse. still feel sick but much much better. I almost collapsed and lost seven ponds in a week and a half. I could barely eat or focus or anything. Thank Goodness i went cuz i read it could have gone to the brain if not treated and i feel better. Guess my dermatomyositis the meds that lower my immune system and the stress from school really kicked my butt! Well im kickin its butt now thank goodness!

so tired but trying

This cold is kickin my butt. I was told to see a doc but they wont even touch me cuz of my condition im a liability. Option 2 the hospital but I hate it there. A place im too familiar with but they cant deny me and are the only ones worth paying cuz @ least they will run tests. I am gonna wait though and I think about the song and the words "If today was your last day would u live each moment like your last? Whats worth the prize is always the fight. Every second counts cuz their no second try." -NICKELBACK So I press on even if I feel I can't. Even if it kills me I will live like its my last cuz it just might be.

colds!

WEll my son caught a common cold virus and because of the stress of the 2 classes and a low immune system i now have it too. Im not worried but i am. Believe it or not i have never got a cold since being diagnosed so i dont know what to expect. Ive had MRSA staph infections that I got from hospital stays andshingles, but never a cold. Hes been sick a million times before because most toddlers in daycare do. He started daycare after the age of 2 and ive never once got his colds and I must say we have close contact, I wake up up w/him asleep right in my face and breathing his cold right at me. Well I guess if I survived the deadliest form of staph MRSA 3 times i can nip this in the bud. I pat myself on the back and wish myself luck i hate colds in the middle of summer it seems a little ironic.

not contagious!

Whenever i was asked what was wrong w/me and tried to explain it people never understood. So now if i dont want to deal with the drama i just say i have lupus. That is a condition more people know about. I once told a lady in an elevator what i had and she said I was contagious and she was a nurse so she would know. WHAT AN IDIOT! I tried to explain that it was a malfunction with my cells and they could not possibly jump out at her and if i was contagious i think the cdc would do something about it. I was shocked and so were the others in the elevator and they werent nurses and understood my condition. WE ARE NOT CONTAGIOUS. People really should have more consideration for others feelings. I was still hurt even though I knew she was wrong.

rest and excercise

Rest for people w/dermatomyositis is essential, but excercise is also important. I know I cant excercise like I use to with the stepper lunges weights etc.. but stretching and pushing your body a little more everyday is so important. I couldnt lift my head, my arms over my shoulders, or walk a few steps, but after I realized just lying there was not gonna fix things and I wanted 2 live i began to push. I walked a little futher when I could. I tried. It took awhile but now i can brush my hair, bathe myself and lift myself off the toilet. I would reach, pull, push and squirm my way off toilets. I got tired of having to wait on people to lift me. Granted their were many times that no matter what I tried I just could not do it, but I tried. They say real excercise hurts and no pain no gain well I think its the same w/those of us affected by a myositis condition. Its just a different level. Everyone is different but just be in tune with your body and mind. No matter what anyone else says ONLY YOU KNOW YOUR BODY! I have become more in tune w/my body since being diagnosed. I wonder if this is the same for others........

whats wrong with you?

I took the 2 classes, and the summer schedule is excrutiating. A lot of info in a little time. 2 days before school the pain in my legs had worsen. Yet with a pep talk from my husband I decided to push on. He asked me how bad I really wanted it. The thought stayed w/me. I wanted it now more than ever. I'm a senior and soooo close to having that degree in my hand. Yes it took me longer than most considering the obstacles but I want it bad. Its been rough, real rough. I still have this pain and ive only finished the first week of school. (and im so tired) I try to play it off like i dont have pain because i hate to explain to every one my condition, and i want to "fit in" and be "normal". well the other day i was walking along thinking i was doing a real good job of hiding the limp when suddenly an older gentleman stopped me in my tracks and asked me "whats wrong with you?" I stood there perplexed. I became a little defensive and replied "what do you mean whats wrong with me?" I had no idea what he meant. He replied well i see you are limping whats wrong? I told him I had a condition that affected my muscles and that they were being attacked by my own body. He asked my name and I told him. He told me he would pray for me. He reminded me to pray too, and he walked off leaving me in a state of confusion. I was embarassed to think I was pulling off the walk, yet I felt something was with that man and I pressed on to my class tears in my eyes and joy in my heart. A stranger cared. People arent all mean, and I felt he was a blessed man. He probably was the preacher on campus. Along w/confusion and embarassment I felt empowered. Was it God letting me know he was their to carry me when I couldnt walk? Like footprints in the sands of time.

things that make you go hmmm...

Woke up this morning @ 8am and couldn't get up out of bed. No energy and worst of all a pain that is so excrutiating i can't walk. it is located in the back of my right thigh. it feels like a knot. i have no idea why i get these from time to time and sometimes for many weeks or months in a row while other times i dont get them in for what seems like forever. I barely have the strength and courage to get up and hop to the fridge for a drink and now i'm posted in front of my comp wanting to go back to bed badly. Noone around to really help except my son who i've been watching watch tv.Thank God sesame street and PBS He always knows when somethings wrong. He brought me a drink earlier and asked if i was okay. he told me dont worry momma! dont worry!. Oh my heart broke and fluttered at the same time. I wish i didnt get these episodes they remind me im not normal cuz somedays i almost feel so good i forget i have this condition but than something like this happens or ill watch other mothers doing things i wish i could do and im brutally reminded. Sorry if i sound so negative right now i just feel like poo and it reflects in my writing and thoughts. oh no im crying out of frustration and whats worse is that people have no idea what its like living with DM. I feel they think its all made up for attention. But who in their right mind would want to feel this way or act like they have this horrible condition for attention. oh the desperation but i must remind myself i have my own home ,family that love me, my angel and im alive and way better than i was before. must think positive but its just that thing that makes you go hmmmm...........

bills

Medical bills are horrible and i just recieved my medicare after years of fighting and waiting yet still i am paying so much. The health care system is not what it should be. I'll be starting summer classes @ college & I dont know if I should take 1 or 2 classes. I took 13 hrs in the reg term but I made sure I went on a mon wed only schedule. so i could rest on the off days but summer school has alot of long hours and is everyday. i'm on the fence and want to take 2 but i just dont know if i can handle that plus regular everday life and not to mention i have a boy who turns three next month. He is a handful but he is my guardian angel sent to me in the flesh. MOMMA LUVS YA! :)

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...............