Autoimmune, Depression, and Gluten Intolerance, Oh My...

It's the day after Valentine's Day and I'm ready for a vacation.

I was recently diagnosed with Raynaud's disease, Hashimoto's disease, and more recently diagnosed with Undifferentiated Connective Tissue Disease. I'm tired, I'm frustrated, and I'm sad.

I've always had really cold hands and feet. I've always thought it was Raynaud's, but never talked to a doctor about it. After all, it's just cold hands and feet, right? Then in mid November I was on my way home from work and noticed not only were my hands really cold, they hurt, and I had gloves on. My fingertips felt like they were slammed in a car door. And then on inspection once I got home, I noticed they were white. Not like, 'oh, you touched your skin and it turned white for a sec and then back to red', but white white. Like the blood was drained.


It took about 20 minutes or so of running warm water over them and squeezing them to warm them up for the color to return. So, after seeing there were more serious diagnoses it could be, I scheduled an appointment with my regular doctor and sent pictures so she'd have an idea of what I was seeing. When talking to her, she immediately said it was Raynaud's just based on the pictures, but because of my concern of something worse (and my stupid medical history including a blood clot and other crap) she ordered some blood tests, one being ANA (Antinuclear Antibody) to test for autoimmune disorders. I asked if she could re-check my thyroid while we're at it as it hadn't been tested in almost a year and I was feeling very tired lately. She agreed we should and I made my way to the lab to have my blood taken and went home.

I'm pretty knowledgeable of health issues and diagnoses and lots of things medical, due in part to my history in working in several medical environments, and also my morbid obsession with all things medical (I have a subscription to JAMA). I know that food plays a huge role in health and the state of our food sources today isn't a thing to be proud of. Years ago, 9 to be exact, when I was a stay-at-home mom and had all the time in the world to make healthier choices, I was Paleo and doing Crossfit and was at my best. I was around 125 lbs, happy, radiant, and just all around doing my body good. Then a year later, things changed, my son didn't need me to be at home when he was at school, and I decided to leave his father. I had to get a job. I held on to Paleo for as long as I could, but I didn't have time for Crossfit, and I got a blood clot after 3 days of working and was hospitalized for 6 days. I worked through that as best I could and eventually, as all things change, my diet slid to easy and convenient. I didn't think I ever had issues with gluten, I just avoided it because I know there are healthier options. At first, I didn't really notice much. But as time went on, I noticed weight gain, sluggishness, and lack of interest in most things. I was focused on getting home from work, getting a drink, and hanging out with my then-boyfriend now-husband. Sometimes you know the right thing for you, but you don't do it. You don't listen to the inner voice begging you to do the right thing, to get back on track, to take a step back and see what's happening. You put that voice away, you shush it, like a toddler bugging you when you're on the phone. The 'I'll deal with it later' mentality. And then shit hits the fan.

So, with concern growing and knowing it would be about a week before I got bloodwork results, I decided to proactively cut gluten from my diet. I messaged my doctor a couple of days later as a few results from the thyroid tests came in showing highly elevated antibodies and a few other inconsistencies asking if it looked like I might have Hashimoto's and to let her know that I've gone gluten-free to try to get a handle on it if it was, and to just try to get better, even if it's something else. The next day she messaged me with the last blood test result, the ANA, saying it was positive and I have Hashimoto's and I was being referred to a rheumatologist for more testing.

I saw the rheumatologist just before Christmas and, after explaining my weird symptoms - brain fog, pain in my hands and feet, trouble remembering words, saying the wrong word - I tried to explain to her that I went to a chiropractor for what felt like a rib out of place (apparently that's a common symptom of autoimmune disease) and could not think of the word 'chiropractor'. I said "a uh...you know..um...the guy that adjusts things, like, your back..." and she calmly said "chiropractor, that's ok, that's totally normal what just happened", and my very odd need, not just desire, not just a joke about wanting to really bad, but a full NEED to sleep. I could have slept in the chair in her office. I was nodding off driving. Anyway...she ordered more blood work and sent me on my way. *Side note: always ask how much bloodwork is likely to cost. I didn't know I was going to owe them $2500 at the end of this. :-/ And that's after insurance.

As those results filtered in over the next week or so, I felt really all over the place. What ultimately came of it was Undifferentiated Connective Tissue Disease. I have some, but not all of the markers for Lupus, Scleroderma, Sjogren's, CREST syndrome, etc. All of those are connective tissue diseases. It's just that there are so many...so freaking many, that they test for the ones they know and anything outside of that is Undifferentiated. There's also Mixed Connective Tissue Disease, which will be discussed at the next appointment with her at the end of February.

So, Raynaud's, Hashimoto's, and UCTD. All autoimmune, all likely were present before symptoms presented, but my dumb ass didn't know to ask for a simple ANA test way back with the blood clot to save some time and issues. On top of that, I think my hormones are out of balance and when I tried to request blood work on my own, the lab told me I needed a doctor to request labs. So I reached out to my doctor, but she's out on medical leave so her MA said she'd ask the on-call if she would put in the orders and she said she wasn't comfortable with that. What?!? What do you mean you're not comfortable putting in orders for blood work? I'm not asking you to diagnose anything, I'm not asking you to read them to me, I'm not even asking you to acknowledge them. Just put in the f*ing order! So I did what any free, red-blooded American does and went to a different doctor.

Now I'm waiting on saliva test results, which are better than blood results for hormones, updated thyroid tests including the Free T3 and Free T4 that weren't done with my regular doctor, and a handful of other tests that I need to know. I'm exhausted, my veins are perforated, and I'm depressed. I'm on Synthroid, which doesn't seem to have any effect, Lexapro to keep me from crying all day, Plaquenil to make my immune system take a vacation as it's working 24/7 rather than being on-call, Prednisone for all the inflammation, Coumadin because of a blood clot from 8 freaking years ago, Xanax for panic attacks, Vicodin for pain, and a handful of muscle relaxers I only use when I can't sleep. *sigh*

That's about all for now. I need to keep track of my symptoms and food and feelings and what I'm eating to see what's triggering flares with Raynaud's, what's making me so freaking tired, what makes me cry, etc. And since my talker is broken, typing is becoming my saving grace. It's super frustrating to not get words out correctly when in your head, it's all perfectly clear, like you would have said just a year ago. I feel broken, I feel alone, and I feel very very lost.