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Joan’s Fight Like a Girl Story (Lupus, Raynaud’s, Sjogren’s)

Joan's Story (Lupus) LRIt was suspected about 24 years ago that I had Lupus when I went to the ER for a horrible sinus infection. I blew it off until 17 years ago when I got terrible pain and was finally diagnosed with 3 co-morbidities: Systemic Lupus, Sjogren’s, and Raynaud’s. It was scary when they told me I have a disease that has no cure and was considered a death sentence. As the problems progressed, I lost my ability to swallow solid food and can only have a liquid diet for fear of choking.

I decided this disease was not going to get to me because we had just adopted a baby and my plans were to dance at his wedding. I also had to help my husband who had a brain stem stroke at the age of 37. I had my goal set that I was going to beat the terrible trio. I have been fighting ever since.

About 4 years ago, I had a set back when we were in a car accident leaving me with herniated discs and stenosis of the C spine. It is causing some paralysis in my left arm, but I cannot let that slow me down. Our son is in his last year of High School and then off to college.

I have fought like a girl as up until the past year as the paralysis got worse I earned my Blue Belt 2nd degree in Kenpo Karate while my son became a Black Belt Sensei. I will not let this slow me down and will continue to fight like a girl and win this battle. I have a wedding to dance at when my son settles down and grandchildren to teach when he is married and decides he and his wife will have children.

I am not ready to give up my life and I will fight like a girl and encourage others to do the same!

Joan
Florida
Submitted 9-3-11

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

5 comments

  1. Thank you for sharing Joan!
    I have systemic lupus, sjogrens syndrome, and raynauds also, plus fibromyalgia, pernio, anxiety, depression, along with other problems.
    I know what that feels like and I think you are soo brave!
    I have alot of people who don’t believe and think I am a hypocrondriate.

    I enjoyed reading your story…have fun dancing at your son’s wedding and taking care of your grand babies some day!!!

    • Thank-you Laurie! I think it is important to Educate people and let know about the these co morbidities. Many people see me and because I do not have a lot of visual issues, they think I am crazy parking in a Handicapped parking place. I have had a problem at a restaurant that was a buffet, because I told them I could not eat and only wanted a drink. I was asked to wait outside for my family. Education is the key for people to understand the hidden diseases that affect people.

  2. My body fights sle,sjogren’s,reynaulds,Addison’s disease,diabetics,c-45 injury L56+s12-coxycc injuries,fibromyalgia, chronic pain syndrome and arthritis of knees, cysts on hip bone. I am on morphine to keep extreme pain at bay. There are not many organs left untouched by SLE. I am thankful for every moment I live. The lord has carried me and walked with me thru many highs and lows. I am bedridden right now,but getting better day by day. I don’t know name of condition, so many, but my muscles don’t know how to relax. They losen but go right back to contraction state and are very weak. I have at home therapy, but not much longer,because I am chronic, and they don’t see me getting better. I push myself and go thru cycles. I am sure I will regain ability to stand for longer than a minute and if I don’t oh well I will use wheelchair as much as possible, been there before and I can do it again. With meds I can usually get thru pain, it is profusely sweating and the nausea and weakness that give me fits. I know with G-d’s help I will be victorious either on this earth or the new heaven! I keep praising Him because He does everything for me and meets every need I have and a lot of wants too. Can’t keep a girl down, can they!,,
    Thanks for sharing. I sure would like to know if there ate others that have Addison’s disease. Blessings to all. Joyful Nana aka Deanna

  3. Thanks for sharing Joan <3 I'm 31years old and was diagnosed with raynards ten years ago 🙁 It has now progressed onto CREST syndrome i too live basically on a liquid diet among other things . I have my good days and my bad days but i never loose the strength to keep going 🙂 It's great to read other women doing the same <3 Fight like a girl <3

  4. Dear Joan,

    I appreciate hearing your story. I have fibromyalgia and all the symptoms of lupus…diagnosis to be determined. .. I take karate with my family and I keep getting injuries. I HATE having to sit out. I am inspired that you went as far as you did with your martial arts training. Your story has encouraged me to “fight like a girl” and not let injuries and illness keep me from participating even if I do have to sit out often.

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