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Thread: One Day At A Time

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  1. #1
    Join Date
    Mar 2013
    Benton, Maine
    Thanked 3 Times in 1 Post

    Smile 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

  2. The Following 3 Users Say Thank You to katwoman For This Useful Post:

    catlady04240 (05-10-2013), Sammy (05-07-2013), tgal (05-08-2013)

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