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! :)