Take a Break, Get a New Doctor, Cry in Her Office, Buy Yourself a Present
"Hey, Sarah! What have you been up to?" Has been the most dreaded question you could hit me with over the last few months. "Oh, well meaning individual," I'd respond, "I've been doing what feels like nothing whatsoever, but I have been assured by those near and dear to me that 'taking care of my health' is 'doing something very important' so I guess I've been busy... ish? One thing's for sure: I know what's happening on ALL the TV shows!" Basically this summer I decided it was time to make some big changes to my health care regime. I changed rheumatologists after, frankly, too many incidents of poor care (in hindsight, I'm ashamed to say I really should have gotten fed up sooner)(my therapist would say this is an example of me being too hard on myself. I'm working on that) and decided to stop taking some major medication that wasn't doing anything to lessen my symptoms (another thing I should have admitted sooner) (DAMN. Still working on it). Fun bonus: It was critical that I closely monitor my tapering off of this medication, because it put me at risk for seizures. It also made my cognition come to a virtual standstill, so I couldn't read, I couldn't write (sometimes to the point where I couldn't compose coherent text messages), I couldn't do much of anything but watch TV, wait for my body to rid itself of useless medication, and hope I didn't have a seizure in the process. Does that sound really shitty? Believe it or not, that was me sugar-coating things, but I also want to make it very clear: SUPER SHITTY.
On the bright side, I got a wonderful new rheumatologist who is already helping me more in just a few months than her predecessor did in years. At my first appointment she told me that she was going to help me get to the bottom of what was causing my pain and help me find solutions to my health issues and I responded by bursting into tears (a completely mortifying way to meet someone and also a great way to be like, "Hey dude, this is what you're getting yourself into.") then, when she handed me a tissue and asked if I was okay I said through my snotty sobs, "I just didn't expect you to be so helpful!" And THEN she said, "I'd like to introduce you to my mom." Because it's a mother/daughter practice (HEART EYES FOREVER) and her mom, who is about a foot shorter than me, came in, held my hands, examined my swollen joints and said, "Oh you poor dear." and you know that started me crying all over again.
With my new rheumatologist's thorough investigative skills at work I was able to receive a new diagnosis: Undifferentiated connective tissue disease. She explained it to me in some way that I don't really remember (cognitive issues, remember? Because I don't!) but she, being a smart lady, sent me home with a lot of literature that I could read later and use for research. I have since come up with my own way of explaining this to caring folks in my life who have asked. There are connective tissue diseases, which are autoimmune diseases that affect the joints, muscles, skin, and sometimes lungs, eyes, bone marrow, and other bodily accessories. Connective tissue diseases include lupus, scleroderma, and rheumatoid arthritis. These diseases are diagnosed by finding a specific red flag in a test. For example, you could get a blood test and the results come back saying, "DING DING DING! Rheumatoid arthritis!" With undifferentiated connective tissue disease, you have a sampling of symptoms from many options in the connective tissue disease buffet, but you don't get any of the DING DING DING results on your tests. The way I explained it was like Venn diagram, but because there are many factors at play and I don't know what a multi-player Venn diagram is called I said it was like a charm bracelet. Undifferentiated connective tissue disease is in the middle, and all the other connective tissue diseases hang off of it like the charms, overlapping a little but none fully being included in the diagnosis. (Eventually, patients with UCTD can develop a specific connective tissue disease, but sometimes they just have UCTD forever.) Interestingly, there's also a disease called mixed connective tissue disease, which is when a patient has multiple fully-diagnosable connective tissue diseases at once. Since in that scenario all the circles are on top of one another, I explain this not-Venn-diagram as looking like a stack of Pogs.
This diagnosis thrilled me. I mean, listen, it's not great having an incurable disease. I've had one for a decade, so I'm basically like, the world's foremost expert on it, and here's my take: It's utter bullshit. But having someone decide to analyze your whole mess of symptoms from the bottom up and just start from scratch and make it their mission to figure out what's up with your trash heap of a body and then find a way to make your life easier?! That's the sick person's dream, man. You can see why I say in her office and cried, right? WOULDN'T YOU?!
Now on to the fun part. No! Getting a brand spanking new diagnosis because my brand spanking new doctor gave me a full workup and made it her mission to help me isn't the fun part! The fun part is that the way they treat rheumatic autoimmune diseases is with antimalarial pills. Oh you read that right, my friend. When my dad called to talk to me about my appointment he asked if this was all just a very complicated way of getting to go on a trip to the Amazon. "Yes Dad," I deadpanned. "This has been my longest con yet."
My rheumatologist explained it this way: After World War II soldiers were given antimalarial pills, and the ones that had rheumatic factor reported that their symptoms had lessened. Since 1945 the same concoction has been used (it's what I take now) and while scientists understand how the medication works in terms of like, chemical composition and other science words, they don't really know why an antimalarial drug works to treat autoimmune diseases the way it does. It just does! So they prescribe it! Also, as a side effect, you can have insane nightmares. Weirdly though, I have horrific, gruesome dreams where my reaction is just to observe and go, "Huh." Then I wake up and wonder if I'm a sociopath, but I'm pretty sure I just watch to much HBO.
So to recap: I stopped taking a medication that was a real whopper, but doing so made me susceptible to seizures. I got a new doctor and a new diagnosis, which explained a LOT about why I had been feeling the way I had been feeling for, oh, YEARS. Then I got put on a new medication that will treat any secret malaria my body may be harboring, but also could set me up for some wackadoo side effects, the only one of which I've experienced so far is blood soaked nightmares. Also, it takes at least six months to find out if it's really working. On the plus side, I am starting to feel better (I'm at about month three now). Suffice it to say, some days in the past few months have been a little bit rough on the ol' morale (this is the most sugar-coated statement in over a thousand sugar-coated words I've typed here). Which brings me to my favorite tiny pick-me-up for bad days: Presents!
Buying myself tiny presents is one of my favorite things, and I did it quite a few times when I was in my recent hellhole of sickness. I've recently found a cookie recipe that I'm obsessed with (more on that to come) and while out running errands I decided to splurge and buy myself some high-end vanilla extract to use in my cookies. This is the perfect example of a pick-me-up present for yourself. We're not talking about splashing out on something extravagant. Spend a few extra dollars on something that you don't need to spend a few extra dollars on, but doing so would add a little bit of brightness to a dark day. Now when I bake with my hoity-toity vanilla I feel like I'm worthy of the Great British Bake Off tent, even though I'm in my tiny, tiny kitchen making yet another batch of my favorite chocolate chip cookies.
Lil' presents helped me keep my morale afloat over the past few months, and now I'm finally ready to get back into some of my favorite parts of life. I had plenty of time to find some great recommendations for this ol' blog, and they'll be coming soon. And I know you know it's almost time for the most wonderful time of the year: The Annual Gift Guide. I promise this year's gifts won't be influenced by my antimalarial nightmares. Mostly.