One Day At A Time
Hi everyone reading this post. I was diagnosed with Discoid Lupus last year in March. For 20+ yrs I have had Lupus but it has been attacking me backwards. I started with the rash (not sure why they call it a rash when its under the skin) in 92 , while I was in the Army out on a field mission. My legs became so painful and swollen and had red dots to patches on them for my knees down. Sometimes I could not even walk. Since then it has progressively gone up my body to the top of my head. I have seen so many doctors, and they gave me so many diagnoses, from bug bites to petichia to vasculitis, but never any further than that. They would always just treat my symptoms as they came. Never putting the pieces together. I understand that Lupus is difficult to diagnose, but its not impossible. I understand that most doctors don't understand this illness. Plus we have limited doctors in Maine, but I have been around the world basically and it still took 20+ yrs to diagnose. My SLE is cause by not being born without the C2 protien, so I was destined to have Lupus. (Lucky me). In 20 yrs no one thought to check those protiens?? Since August of last year I had a turn for the worse. I now have the Systemic Lupus. It put me in the hosp for almost 2 months. 1 1/2 weeks shy of 2 months. It has attacked my heart and nervous system, and caused neuropathy in both legs (L) being the worse of the 2. Walking is a difficult process. I was working. I have not worked since Aug and I'm still waiting on disability from the State and VA (Military). I have been on Medrol for over a year now. Have gained 80pds. Was on Cellcept but now I've just started the Benlysta Infusions for the Lupus and to possibly help get me off the steriod.
I'm basically still trying to adjust to everything. My life did a 360 and I haven't caught up yet. Plus I am seperated and have 2 boys 13 and 8. So I'm depressed, mad, fustrated, sad, scared, hurt. Trying to deal. I started to talk to a specialist for trying to coop and handle my depression. I'm scared of the future and the suffering that will come. I was tough in the Army, now I'm a bowl of jello. I hope that this intro is understandable, I have thoughts, but dont always go in sequence. Thanks for reading. :-)
This just took me 1hr 45 min to type this little paragraph. My hands don't work well. Have to keep going back to correct. LOL UGH
Welcome katwoman! Sorry for your struggles. We all can relate. I've had lupus for 23 years now, diagnosed as a child. I've always had SLE. It is quite attracted to snacking on my kidneys with my flares. But over the last few years it attacks my muscles mainly in my upper back during my flare ups. My symptoms were bad at first then had a great period of remission for 9 years thanks to Cytoxan but then got married, dealt with normal people stressors: moved away, started working , started life. My dad was in the military at the time and getting called to Iraq and family members were starting to have babies and I wanted one too! So the perfect storm was created and now I basically flare every 2 years! Ugh!
So your description of going from military strong to jello is so understandable! I currently feel like I am 80 at 34 lol!
i had to go from working full time nights as a nurse to weekends in an infusion clinic tried my had then at full time occupational health and now am part time in case management. I work 4 hours a day and that's it! By 2 pm I'm spent! I can barely keep up with my house!
So anytime come join the frustration and vent! We are all here for you!! Feel better!
Poor luv you certainly have had your fair share. The more i learn about this illness and hear from the people who live with it i realise what a strong bunch we are. This disease effects us all differently but we are all united in our fight. You are a strong woman and mother and from the history you have given one hell of a fighter. I know sometimes it is just so bloody frustrating when your body keeps throwing curve balls at you and the lupus is to blame. Doctors generally don't seem to understand what goes on with this disease and i often think i wish i could find a Doctor who has lupus then maybe just maybe we would get some understanding instead of a deaf ear which is all too common.
I wish you well, keep talking and checking in with us we are all here for you.
I also live in Maine and your right not many lupus drs here I don't have one just a NP but its frustrating I already travel a hour to rhemy and just feel that they think prednsone is the magic pill just feel at a lost I have had lupus since may 1995 and its attacks my kidneys and lately been tired and my spleen is larger than it was in 08 whatever that mean do you know of any good drs in Maine thanks i work full time as a cna/m in a nursing home stressful but love helping people just so tired of drs now