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The Long-Awaited Diagnosis

But first, let’s recap.

It all started in the summer of 2017, nearly two years after my one and only manic episode, the diagnosis of Bipolar Type I, and the subsequent prescription for Lithium Carbonate 900mg. I believe during this time, my weight was at its highest at around 150-160 pounds. I had been out posting flyers (for my job) and started noticing that my thumb hurt pretty badly whenever I used it to push pushpins into a corkboard. I didn’t think too deeply about this and brushed it off. That winter, I remember I began feeling the pins and needles sensation in both of my hands. Again, I just brushed it off, thinking it was maybe because we slept on futons at that time and I had poor circulation.

Fast forward to winter 2018, I started noticing more symptoms. My hands would be stiff and achey in the mornings and at night, but most notably in the mornings. I finally decided to visit the clinic on base and they told me that there was something abnormal about my blood report so they referred me to an off base hospital. I went and they took a copious amount of blood, and x-rayed my hands and feet. But everything came back normal. So again, I brushed it off. Plus, my mom has arthritis. Maybe I was getting it too, you know?

In winter of 2019, I remember finally noticing how the barometric pressure started affecting me. There was this one distinct night where I had a bad day and I came home to paint my worries away, and that night it was very cold and rainy. I felt like gravity had increased by a hundred fold, my ankles tingled painfully, like there were crabs constantly snapping at them. I started getting a searing headache and before I knew it, I was bedridden. The exhaustion was incredible and shocked me because of its suddenness. I remember that winter around Christmas time, I caught a cold (or was it the flu?) and the fever I had was one of the worst I’ve ever experienced in my life. I remember briefly waking in the middle of the night burning, tearing my blanket and sweater off in exhausted desperation, my head feeling like it would split apart. That following morning, I felt like I had just gone to war in my brain. Like my brain was dealing with the aftermath of a violent battle. I still get goosebumps thinking about this now, because when it comes to my health, the word war is very significant to me for some reason. That night, as I was suffering from chills, exhaustion, a major headache, and a fever, I truly believe—knowing what I know now—that I could’ve died in my sleep if my body had lost that war.

After that, I started noticing a seemingly permanent fixture in my vision. At first I thought it was a tiny little “aura.” It looks like a tiny piece of hair that changes shape, sometimes coiled, and sometimes unfolded, constantly in my left eye’s field of vision. I went to the optometrist on base and was told it was a normal part of aging. My vision was normal. I know I have astigmatism, but I don’t really need vision correction to function in daily life. I wear computer glasses voluntarily to minimize blue light damage. The optometrist told me everything was fine. So again, I brushed everything off.

This year in 2020, I remember that when we moved to this apartment in February, I was feeling okay. I still had mild pain in my hands, but that didn’t stop me from all the duties involved with packing, moving, and then unpacking. Shortly after we moved in, COVID hit. My work promptly became telework and I remember that aside from the stress of the outside world with the virus running rampant, I was doing relatively okay. It was around this time that I finally made the connection regarding what I ate and how it correlated with my “flareups.” That the culprit was more than just bread. That it was sugar and milk too. This summer, I remember spending the day out in the sun with Miyu on her scooter. I was exhausted five minutes into our little adventure. I remember my heart pounding in my chest as I was struggling to keep up with her. It felt like the sun was zapping the energy right out of me. My chest would ache and I would have a hard time breathing, like I wasn’t getting enough air.

Then, I remember the overwhelming amount of stress I endured trying to complete the final courses in my degree. I noticed in early August I started to get a really bad flareup, one that was like a constant drone. This was when my ankle swelled up, then shortly after that I couldn’t bend my right arm. Each time it felt like I had suffered a major injury of sorts. Then my knees and hips joined. I noticed it became more and more difficult to stand from a seated or laying position. I felt so heavy.

So during my third meeting with my rheumatologist on Monday, December 21, Dr. Matsueda explained that my blood results were definitely off the charts, specifically regarding my “titer,” which was 3,730. The normal count is 10.

He concluded that I have Mixed Connective Tissue Disease.

It is an uncommon autoimmune disorder that presents primarily as SLE, then scleroderma, polymyositis, dermatomyositis, Raynaud’s, and possibly also Sjogren’s syndrome. I am definitely showing symptoms of SLE, polymyositis, and Raynaud’s (where your fingers turn colors).

Dr. Matsueda gave me three options: (1) NSAIDs, (2) Steroids, or (3) Hydroxychloroquine. Seeing as that NSAIDs no longer work for me and are hard on my stomach, I opted out of that. Then when he explained the rather serious side-effects of steroids, I also opted out of that. So, it looks like I’m going to start my treatment plan with hydroxychloroquine, otherwise known by its brand name Plaquenil. There is a possibility that this medication might cause vision damage so I have to get a full eye exam first, which is scheduled for January 5. Dr. Matsueda recommended I get an eye exam every 6 months or 1 year. January 8 is when I have another appointment with him to start Plaquenil.

In conclusion, it’s been a very depressing Christmas holiday for me, but I remain hopeful for my health and grateful for the support of my close family and friends. I’m still watching what I eat and will probably continue to do so for the rest of my life. I have completely eliminated sugar, gluten, and milk from my diet. Sometimes I will allow myself a small piece of bread or a slice of cake, or a special coffee drink, but otherwise I’ve been doing good on that front. After I get some work stuff done over my winter break, I’m going to slowly start a yoga and walking-outside regimen. Of course I’ll be making future posts about those.

Looking ever forward. 🙂

2 Comments

  1. G

    Wow, very descriptive post, especially about the night you had a fever 😰 At first I thought you were going to say it was related to the lithium over the years. It’s awesome you’ve been implementing all those difficult dietary changes already- that’s a feat in and of itself. Hopefully the medication helps!

    Like

    • I do actually believe that Lithium had a large role in my developing MCTD, but first I need to write about what Lithium is and how it affects the body, and how it ultimately wreaked havoc in my system over the years. If you google “Can Lithium Carbonate induce SLE,” the answer is at the very top.

      I hope it works too! 🙂

      Like

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