Hi everyone! I have lupus. Yup I am still getting use to saying that. It almost feels wrong. I keep waiting for the dr to call and say “oops we made a mistake it’s all in your head” Hmm sounds like I need therapy? No not really, I think…
When I was in middle school I started having problems with super cold hands and then feet. I heard the name Reynaud’s but no one was really upset, so I forgot. Later I joined the Navy after 6 months of fun and sun in Puerto Rico, I got sick. I had a strange face rash and aches but worse of all I was passing out. I went from military hospital to military hospital. Of note Walter Reed is as bad as the media portrayed them! I finally got a medical discharge with no reason for my problems. Just a note in my file that says I show labs and signs of a medical problem but since they were unable to affect it with medication it was deemed at least partially “A white hysterical female” psychiatric problem.
I did find one wonderful thing in the Navy! My husband. We were married. We have had seven children. Two of my babies are in heaven one I believe is directly linked to lupus. Other than my first pregnancy every baby was a hard fought battle. After my last little one over a year ago I began getting really sick and run down. Don’t laugh there is a difference from being tired parenting 5 children and this kind of tiredness.
I started to redo the garden in the spring. Then my hair began falling out! ECK! Okay I had one gray hair and I didn’t dye it. I’m not particularly vain but losing my hair scared me. The dr didn’t seem overly interested. The summer wore on I got sicker and sicker with each weekend’s gardening. Finally I stopped. I went for one last try after I was put through the ER for chest pain. The dr, this time was a sub dr, He kindly told me I was that age to begin losing my hair and getting aches and pains…. I got a second opinion.
On my 33 birthday I got the call from my rhuematologist. She told me I had Lupus, Celiac disease, and most likely Mixed Connective Tissue Disease. I actually cried, for happiness. Strange I know but know I knew I wasn’t crazy! I had fought for over 18 years with thinking I was being melodramatic, or a loser. I am neither! I also now had a chance to try medicine to help stop from getting worse, and a chance at feeling better.
My lupus melodrama has been a long road. It’s not over. Sad to say my experience is not terrible different from many with chronic illnesses. I have just picked up book about chronic illness called “Life disrupted: Getting real about chronic illness in your twenties and thirties” by http://www.achronicdose.com/ her weblog is
God bless friends see you tomorrow!