sherron's Journal

what a day!!!!!!!!!!! had my family over for easter. we had a huge dinner. really wore out today. think it is time for another chemo treatment.just  really  hate to do it. it takes you down before it boost you up. and the sickness that comes with it. i wish it would go away for ever. today i could cry over anything. emotional wreck. dont want ot tell my family. so i try to act like all is good. im suppose to be taking cellcept. but just cant make myself. thats another pill to take. mg is like a curse!!!!!!!!!!!!!!!!!! cant sleep.get your hopes up that it has went  away and here it comes again.i try to be positive but it is hard.moving into my new place this weekend -got to find the energy somewhere.i pray alot. sometimes i think the lord gets tired of hearing from me. i ask so much. they say  the LORD dosnt put more on your shoulders than u can handle. have to believe that tomorrow will be a better day.missing adam alot to. but i cant let that get me down.gracie is staying with me. she is my heart . the grand kids i the only thing that keeps going. (gotta shake this today) to stressed!!!!!!!!!!!! my arms are so tired-- i have to laugh. the rag doll feeling. thi web site has helped so much. to know that there is someone besides me that has this. the symthoms --- other people have too-(im not crazy after all--haha) need to rest but im tired of resting. i dont want to give in to this. im so out of shape. mama is 68 and she does more than me. she works cicles around me. thats what gets me. before i could work 2 jobs , keep my house spot less, nothing was out of place. i used to sew alot and now if i start who knows when i will finish. will i everbe me again???????????????

there i hope!!!!!!!!!!! i thought i would never say that. i have struggle with this grab for over 5 years .i have tried everything out there from ivig  to plasmapheresis. been on steriods for 3 years straight and mestion makes my stomach turn upside down, it makes my stomach cramp like  im in labor, gives me diarrhea and gas like crazy (haha). it also messes with my vision.can anyone relate ? when i first got sick i was told that i had the flu that went on for a long time .but i had never heard of having the flu and it would make your eye shut. then it went to  bells palsy and then they said i was having brain stem strokes. got down to 88 lbs. couldnt talk  sounded like charlie brown. no one could understand me. i couldnt eat i would get choked ever time. if i drank something it would come thru my nose. got to where i couldnt even get off the couch. was so weak. so depressed!!!!!!!!!!!!!  my face was so numb and got to where i my arms were wouldnt move. went to another doctor and he said he thought i had ALS. so my loaded me up and took me to vanderbilt hospital in nashville tn. and it took about 3 weeks for them to diagnosed me with mg. we had never heard of that.i can remember the first day they brought me  my first pill of mestion in about 30 minutes i could talk. what  a blessin i thought. i called everyone on the phone and everyone thought i was my daughter calling. iwas so happy to talk again. thought i would go home and be allright. boy was i in for  a surprise. i was sent home with mestion and steriods. did good fr acouple of months and everything went down hill. so they stared me on plasmapheresis that work for acouple of months and i thought i had beat this again. and then down hill again. so i tried ivig and ended up in icu . i was sitting up and i just stopped breathing . so i was o nthe breathing machine for  2 weeks. the worst of the worst. almost didnt pull thru. but i made it again. i have been on the machine 3 times. last time i just wanted to lay down and DIE. I WAS SO TIRED OF FIGHTING. i begged for the lord to take me. i was so depressed. so i went home to die. and then there was HOPE. I HAVE THE BEST DOCTOR EVER. and i truely mean that. vanderbilt started doing a study with cheom (rituxan) . and my doctor got me in the study. and after 4 treatments - i think iam in remission!!!!!!!!!!!!! i feel better than i have in 5 years. the chemo was hard - it makes you so sick andso weak that you want ot give up again but i promised my family that i would finish the treatments. and with there support and the support of my doctor and the LORD I MADE IT!!!!!!!!!!!!  IM  off the steriods and take 1 mestion pill a day. some days no pills at all. first of all i fineally excepted that i had mg and that i would never really be myself again. and i know i can never really work again. and i pray every day. i know my limits. but at least im living. i got my disabilty , it took 5 years.butnow i have insurance .something i didnt have . i had lost my job  my home  i lost alot due to mg. but now i live on my own. i can drive . and i live a normal life .and i can smile again. this makes me cry. because i have stuggle so long. no one really understands this unless you unless you have mg and you know where im coming from. ther not for sure how long the chemo works cause they are learning from me. i can take one more treatment . if i get stressed or upset it comes back my speech gets slurred and my mouth gets numb but i can take a mestion and it will go away. it feels sooooooooooo good to smile and not be depressed . so i take it one day at a time. i hope my story gives hope . i have kept a journal for 5 years . i go back and read them sometimes and see where i was and see where im at now.