Lupus and Ankylosing Spondylitis; autoimmune disease; Rare Disease Day 2013

February 27th, 2013 by Carrie, the Just Mildly Medicated gal

I am so proud to bring you a post from Jody, a strong Army wife and mother, a woman who is a fitness role model to many who do not know her story. I had the pleasure of forming a friendship with her the year before we each started very different journeys through the diagnostic process for different conditions.
Thanks so much for sharing!
Carrie @ Just Mildly Medicated


I’m a 37 year old military wife, mom, fitness enthusiast and someone who now lives life with a pill box I used to see my grandparents have, labeled Mon-Sun full of pills I have learned in the last 3 years control my wellness. Sounds depressing I know and trust me I’ve been there and done that but now I have embraced that for now this is what I need to function and live life to it’s fullest and instead of hiding the box and pretending I feel GREAT all the time I am honest that I have good days and I have not so great days and on the days I feel good enough to push myself and my body I DO and when I can’t, I don’t cry anymore. I tailor and accept tomorrow is a new day. 

 It all started about 3 years ago. As a fitness instructor, personal trainer for quite a while I got to a place in my heart that I knew something wasn’t right with how my body was functioning. I had run the Army 10 miler setting a personal record of 72 minutes in October and by mid-November I was feeling winded just walking up my incline driveway. The headaches were excruciating and to say I felt lethargic was an understatement. I felt terrible, no stamina, little energy and around Jan. I miscarried our 3rd child and again was living on Excedrin to function. 

What I used to do effortlessly on the spin bike and in my cardio class was excruciating. So 6 weeks later I decided I needed to seek help. I saw a provider who actually listened to me and started to uncover the underlying problem but it took about 6 more months before I really knew what was happening. 

Severe anemia, and that was after colonoscopy, MRI of my brain, EKG, Stress test, that’s what they came up with and they weren’t sure why I was so anemic. Long story short we moved, I left that Dr. and landed in Alaska where now I was having what started as 2 knuckles on my left hand swollen (for years) turn into 3 knuckles and then I could barely write my name, because I couldn’t grip the pencil. I couldn’t open jars, again thinking it was muscle stress I wrote it off because I was feeling more energy from the iron I had introduced to my life but then it all hit again…fall in Alaska, COLD already, I was having a hard time just getting out of bed and moving freely. I noticed energy levels fading so I went into a new PCM to get some blood work done for what I thought would help me adjust my iron levels but the results came back with a shock. 

My husband had just left for JRTC, getting ready to deploy for a year, and the Dr. called and said my blood work came back with a positive ANA which meant one of 2 things, I had SLE (systemic lupus or Scleroderma) Say what? I heard the Dr. say I’m sorry, this will be hard for someone like you who is so active but I am recommending a compassionate reassignment for your husband and a great rheutmatologist to get you the best care. 

OK wait my husband’s career is on the line, he’s gone and I’m left with 2 kids and a Google search that dropped me to my knees with the “what if’s and what nexts” So know I am being treated with not only Lupus but also Ankylosing Spondylitis as the rheumatologist uncovered after extensive xrays fusion in my pelvis, spine, shoulder that has fused and exposed probably 10 or more years of living with these autoimmune diseases. 

So today I take a low-chemo drug, I inject myself every other week with a drug for the movement of my joints and hopefully to avoid further tissue,joint damage and daily take at least 3 other meds and as frustrating as it can be that nobody knows I have days when I can barely move because heck , I am 37 and teach fitness classes and volunteer at school and teach Sunday school and seem like every other super mom want-to-be :) my story doesn’t end there! 

I am determined to FIGHT this as naturally as possible but with the realization that I need meds as well. I have tried an inflammation diet I think helps but I have also learned if I think I can go without my meds I will flare and it might end me up in the ER with pleurisy/fluid around my lungs and when I can’t breathe it’s scary. 

AWARENESS is so important and I’m glad to know I have a friend who is dedicated to sharing truth and knowledge as knowledge is power when it comes to you own health! So I am learning autoimmune diseases couldn’t be more frustrating because they mimic each other and nobody can really pinpoint one vs. another and the treatment is a science experiment and I’m the variable :( but I have also learned to Carpe Diem in a BIG way in my life and cease every moment I can function normally without much pain and never give up, never give in, never lose HOPE! 
Jody

Links for more information
Spodylitis Association of America
U.S National Library of Medicine Systemic lupus erythematosus (SLE)

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9 Responses

  1. Anonymous says:

    That is a lot to deal with.

  2. Anonymous says:

    beautifully inspiring Jody!

  3. Julie Anderson says:

    Jody I was very blessed to have you as a neighbor in Williamsburg. I remember how you would strap your baby carrier on and mow the lawn. Sweety, I have always admired your strength and integrity. Now you are inspiring others with you not giving up.

  4. in pursuit says:

    Thank you for your honesty and willingness to share your experience. And Carrie you are doing amazing things by creating a venue for people to share.
    Vicky

  5. Natalie Vega says:

    Thanks for your story Jody! I am 47 and my youngest is 10. Had breast cancer at 40 and since then my life has never been the same. I have Ankylosing Spondylitis and Lupus and it’s painful. I get up to go to work everyday, well unless I am going through a flare up. The worse of all of this is everyone may see me normal but my pains are really bad especially my neck and lower back. Thank God my family do understand as well as my future husband. I keep going and I refuse to give up or give in as well.

  6. I’ve not been diagnosed but my general doctor, along with my gynecologist, are trying to find a rheumatologist. My arthritis panel came back today with some red flags and something about an autoimmune issue. I have many of these symptoms. I also currently have bulging discs at L-5 and S-1, with two previous back surgeries (at ages 16 and 26). I am currently 36 and looking at back surgery #3, requiring a fusion and rods & screws. My neurologist is wanting to avoid that but nothing else is working.

  7. Jenn Rader says:

    Thank you so much for your post. I too have Lupus and Ankylosing Spondylitis as well as Sjögren’s Syndrome and Interstitial Cystitis. My immune system just decided I was the enemy and started attacked in multiple ways. Some days I think I just can’t go on. Today was one of those days. I am still working full time and I prayed just to be able to get out of bed today. I found this post on my lunch hour looking for some inspiration. It’s just nice to see I am not alone. I too have my own pharmacy at home and 5 specialists I have to see regularly. It would almost be funny if it weren’t my life. Thanks for sharing and being a role-model!

  8. chiedza says:

    Very inspiring and encouraging.I was diagnosed in 2014 with Ankylosing spondylitis.Not easy but l am determined to fight and live a normal life despite the pain.

  9. Fatima says:

    I was diagnosed with Ankylosing Spondylitis last year May after being misdiagnosed for over ten years. Road has been rough but it’s really comforting to know there are other people out there who understands.

    Thank you for sharing your story with us

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