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Jodi’s Fight Like a Girl Story (Mixed Connective Tissue Disease)

Blue and Purple RibbonHello, all!! I fight like a girl!!

I am 45 years old and have always been healthy. By that I mean that I’ve never been one to get colds or viruses when everyone else around me is sick. I’ve always had physically demanding jobs and have stayed pretty active.

As I passed the age of 30, I noticed my body changing. I gained weight, and my hair texture changed. I now had facial hair. My first stop was my PCP. Testing showed that I had very mild hypothyroidism. Throughout the years, I developed even more strange changes in my body. My joints hurt. My mouth and nose would get ulcers. I had geographic tongue, I was tired all the time, and I was still gaining weight. I went to an endocrinologist, and all tests came back within normal ranges. I chalked it all up to just getting older and went on with my life.

Fast forward to age 40. Now I’ve been diagnosed with metabolic syndrome and vasculitis. Keep in mind that all of my regular blood panels are still within normal ranges. I mean things like blood pressure, triglycerides, and cholesterol. Periodically, throughout life, I would get little rashes. They looked like ringworm, and since I’ve had nail fungus my whole life, I left it alone, and it went away. But it always came back.

I spent a lot of time in the sun working construction in my younger years, so my first squamous cell carcinoma wasn’t a surprise. I now go annually to the dermatologist so he can take his pound of flesh and send it to the labs for verification. So when I had a little rough, sore bald spot come up on my scalp, my first thought was that I burned myself with the flat iron. 2 weeks later, and it was still there. Of course, my second thought was that I had another skin cancer. Off to the dermatologist I went. He biopsied the lesion, and imagine our surprise when it came back positive for discoid lupus. Per protocol, he sent me back to my PCP for ANA bloodwork, knowing it was going to be negative. Surprise!!! Positive. I followed up with a rheumatologist, and the blood panels definitely indicate MCTD, mostly affecting my joints, skin, and liver. I’ve chose to avoid medication, with the exception of an occasional ibuprofen.

I still work full time, but I’m in an office environment now. The joint pain seems to have increased and happens more often now, but I’m not ready to throw in the towel yet. I want to sleep a lot, but I don’t. I’ve tried to join some online support groups, but they are very discouraging to me. It’s like one big giant pity party out there with everyone trying to outdo each other on how bad they feel or how much medicine they take or how many times they’ve been turned down for SSI. Finding support at home is hard as well. I’m glad to read such positive stories here, and thank you all for sharing them with me.

Jodi
Georgia
Submitted 02/16/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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

3 comments

  1. 65 years ….ABA and ra levels increasing @ 20 percent a year. Trying to deal with it with vitamin supplements and exercise plus beach body shakeology. Drs have no answers…just feed me my blood panel results with no suggestion or recommendations. I’m turning to, of all things, my daughter Kathryn now…for ultimate support and guidance…she is strong now ….and I’m weak with ra and mctd. She’s the ultimate Heath and Fitness homegirls. ….my beautiful daughter!! I am her’s with great hope!!!!

  2. I have been having issues over the last year with joint pain. A couple of months back I could not get up and go and my hands and feet were throbbing. I had blood work that came back ANA positive and Rnp positive. Went to reumtologist who did more blood work and placed me on predisone. Any suggestions on what is going on?

  3. Hi Jodi
    How are things now? I was just diagnosed and I am not convinced they even know what they’re talking about

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