First things first, you have to understand that for almost fifteen years, my health hasn’t exactly been ‘good’. I had my first surgery, a much needed Tonsillectomy, at eighteen and it’s all been downhill from there. I have had thirteen surgeries/procedures in the past thirteen years and more diagnoses than I care to mention.
My first experience being a zebra (medical term for an uncommon diagnosis that presents as a something common) was being diagnosed with Primary Hyperparathyroidism at twenty one, after years of testing and uncertainty. The disease itself isn’t uncommon, but having it at my age and with no family history, is rare. The Endocrinologist I saw told me I was the youngest person he’d ever seen with the disease in his forty years as a doctor. What can I say, I’m special. Surgery to remove one of the four glands corrected the issue and in eleven years, I’ve not had an issue.
My second medical mystery began in late 2012. This is going to sound strange and a bit hard to believe, but I woke up one day at twenty five years old and my body didn’t feel normal. I was absolutely exhausted and not the “I need a vacation” kind of exhausted, but the kind of exhausted that I felt in every part of my body. I had been working three teaching and tutoring jobs while finishing my undergrad and still had enough fuel to come home and cook and clean. I had an abundance of energy and even when I was tired, I was still like a Jack Russell Terrier on speed. My Primary Care Physician (in Las Vegas) found this odd and sent me for lab work. Nobody was prepared for the results. My liver enzymes were in the two and three hundreds which, if you aren’t familiar, is dangerously high. I had those labs repeated every three days for two weeks and they remained the same.
I was then (2013) referred to a Hepatologist that offered this sound advice, “if you’re tired, take a nap”. Needless to say, he got dropped after one visit. Hepatologist number two decided I needed a liver biopsy to confirm or rule out various forms of Hepatitis. The results showed Cirrhosis but my lab work didn’t point to Hepatitis or anything really. With no history of alcohol abuse or family history of liver issues, an explanation was hard to find. A week after my biopsy, my liver enzymes were tested again and as quickly as they elevated, they went right back to normal. Why? No idea. That one test was enough for the Hepatologist to wash his hands of everything and send me on my way.
I didn’t feel any better, but since my blood work was normal, I wasn’t about to chase something I saw as a fluke. I should have paid attention and been proactive about finding out why my liver went AWOL. I can’t prove it, but those events were the start of what is now my reality.
A year and a half and one across country move later, I was almost twenty seven and pregnant with my daughter Ava. Throughout my pregnancy (by mow it was 2014) I noticed that something wasn’t quite right. I had ‘morning sickness’ (or as I called it, ‘right before bed vomiting’) nearly every day, I was swollen with at least twenty pounds of water weight on my upper and lower extremities, and I was sleeping sometimes up to sixteen hours a day. Now, us mommies know that pregnancy does funky things to our bodies and while I’m sure most of you had at least some of those symptoms, mine seem to push the limits of normalcy. I was hospitalized a few times and ultimately, I had to schedule a thirty nine week C-section because waiting any longer put Ava and I both at risk. Thankfully, my angel came out unscathed from my nine month Tour de Hell.
It wasn’t until Ava was a few months old that I noticed something still wasn’t right with my body, only now, I had nothing to blame it on (pregnancy). I am extremely fortunate to have an amazing Primary Care Physician (PCP) who is one of those doctors that doesn’t give up until they find the problem. Beginning in 2014, I underwent (blood) testing for every disease you can imagine, every part of my body was scanned by every type of machine (X-ray, CT, MRI, ect.), I saw well over a dozen different specialists, and had six major ER visits. I’ve had the ‘c-word’ (cancer) throw in my face so often that when a doctor mentions the possibility, I don’t even flinch.
My PCP suspected that I may have an Autoimmune Disease but because my lab work didn’t reflect her suspicion, the testing continued. It wasn’t until late 2014 that any autoimmune or inflammation ‘markers’ (ANA, RNP, and CRP) showed up in my ten thousandth round of blood work. Finally, I had something to prove that my litany of complaints and doctors’ visits weren’t just for ha-ha’s; I really was sick. Now it was time to see the Rheumatologist.
In early 2015, the beast spoke its name and that name was Mixed Connective Tissue Disease. When my Rheumatologist tentatively diagnosed this as the ‘monster’ inside me, I was confused. What the hell is Mixed Connective Tissue Disease and how did I ‘get’ it? Well, it’s a son of a bitch is what it is and as far as how, there’sno way to tell. Before the diagnosis could be confirmed, I was given a medication called Plaquenil for six months, followed by another set of blood tests. At my six-month appointment, my doctor confirmed that I did in fact have MCTD. Soooo, what now?
Well, I was instructed to continue taking Plaquenil and was prescribed Gabapentin to tackle the nerve pain. I was assured that the medication would help with my symptoms and I felt hopefully that everything would be ok. And I was…for a while. At my one year appointment (2016), my blood work showed that Plaquenil [alone] was no longer working as it once did. That meant disease progression and thus lead me to my ongoing relationship with immunosuppressive (chemo) therapy. First Imuran (for the two weeks I could tolerate it), then Methotrexate (for around year and a half), and now I’ve been on Cellcept since 2018.
It’s now a little more than half way through 2020 and my health has continued to decline. I now have a total of thirty seven medical diagnoses and twenty seven prescriptions to my name. You read that correctly, I’m on a total of twenty seven medications (and two supplements) for my MCTD and the thirty six other diseases and disorders I’ve come to aquire. You’d think that with all those medical issues and shoving so many pills down my throat, I’d be dead by now, but, here I am.
When I first began my blog in 2017, it was five years since the onset of symptoms and two years into my disease. It has now been eight years since the onset (of symptoms) and nearly six years since being diagnosed with MCTD. I have no idea what the future looks like. Most days are hard and to say that I struggle, is a huge understatement. The only thing I’ve learned to do, is to keep calm, find your spoons, and autoimmune on.