I have not really mentioned health issues in this space because I feel like I am so much more than the ‘yuck’ that I deal with but after talking with a special person today that just received the same diagnosis, I wanted to share a little about my journey. Forgive the fuzzy memory, just one of the many pleasures of dealing with Mixed Connective Tissue Disease.
I was 18 and could not get out of bed unassisted. I just felt sick and knew this was not normal. I was scared. After two visits with a Rheumatologist in Alexander City, AL, I was told I had lupus-like tendencies, given Plaquenil and told to have my eyes checked every six months as permanent damage to the retina was a possible side effect. In less than a year I felt pretty much normal and decided to stop my medications; I’m stubborn like that.
Andy and I got married (after dealing with the false positive for syphilis) and life carried on with aches and pains here and there but no true issues aside from us not getting pregnant which I always felt was due to what I now know as MCTD. We bought our first house almost 8 years ago and I was thrilled with the above-ground pool. Couldn’t swim a lick and hate bugs but I was out there as much as humanly possible enjoying the perks of my new home. Life was good. Then I got sick again.
Looking back, I realize that the sun exposure was the trigger. I was extremely fatigued, a fatigue that even excessive amounts of sleep could not remedy. My joints ached. It was a chore to get out of bed each morning, my muscles and bones hurt and my range of motion was nonexistent; I even got to the point that Andy had to literally dress me. Deciding I could no longer function in this manner we sought out medical help.
And here memory gets patchy: after several doctors and Plaquenil, chemo treatments, evil Prednisone, and other various drugs I was told I had lupus. I never fully went into remission but life resumed.
Andy got a new job and had to work a third shift on the weekend. I would stay with him at night, trying to sleep in a camping chair. This routine went on for a while and brought on another flare. More meds, another rheumy and more tests later, I had a new diagnosis of Mixed Connective Tissue Disease. I was happy to trade in the lupus for this lesser sounding issue. Then I went online to read that now I was the proud new owner of not just one but multiple auto-immune diseases…… I am an overachiever like that. I remissioned but held my breath. Physically, I was recuperating but mentally, I was paused. Chronic pain is a personal path that can not be seen by the casual glance. Thankfully, Andy never thought I was crazy or doubted that my pain was real.
I now live with a few limitations (I am highly sun sensitive and still battle pain and MCTD claimed my uterus, to name a few) but I have a new reality and I have made peace with that. Maybe I am at the point where my story will help others feel a bit of comfort when they hear a diagnosis that turns their world upside down and is compounded by lack of information, knowledge and understanding. It is scary but it will be fine. You will be fine. xo