It’s been four years since The Big Fat Medical Update, so I wanted to catch everyone up on the big changes to my health status.
I’m autistic. We don’t use the term “Asperger’s” anymore. Dr. Hans Asperger was a Nazi collaborator who was responsible for telling the Nazis which of his autistic boys could become good little Nazis…and which little autistic boys were to be murdered as what the regime called “useless eaters.” Now, we (the autistic community) don’t separate autistic people into “high functioning” and “low functioning.” Functional labels are a type of eugenics, and they’re also not accurate. I was diagnosed a “high functioning autistic” in my 30s, but I am the same person, and I would be considered “low functioning” now. I always had the behaviors more stereotypically linked to being autistic, but they didn’t happen as often, and rarely in front of other people. Now? I lose my ability to speak for at least some portion of every day, making me an unreliable speaker, and my stims and tics are far more visible to other people when I’m not at home. I look very much like “those” autistic people you may like to disparage, but I’m here to say that you shouldn’t disparage any of us.
Oh, I’ve also been diagnosed with ADHD. Not currently medicated for it, but I was for a short time.
I’m permanently disabled. I can only work for very short periods of time, and I only work for a one-hour-per-week gig. I was approved for SSDI benefits in 2024. Things had been looking pretty dire (financially, emotionally, etc.) before the administrative judge ruled in my favor, but we’re back on our feet now.
Metaphorically speaking, at least. I need to use a wheelchair to leave the house. There are a few exceptions, but they occur less than monthly. Even in a wheelchair, I cannot spend much time out due to pain, fatigue, and weakness. I am mostly bedbound, which means I’d been legally considered housebound for Medicare purposes, but in reality, I spend 90% of my time in my adjustable bed because I need to keep my feet elevated…or suffer.
I’ve been diagnosed with Sjogren’s disease, which is a systemic autoimmune disease that people mistakenly believe is only about dry eyes and dry mouth. I have both dry eyes and extreme dry mouth, but it’s also dryness everywhere, which includes my gastrointestinal system, my genitals, and more. Sjogren’s is likely the root cause of my IBS, ME/CFS, and even chronic urticaria, though that may be linked to MCAS. (See about MCAS further down.) It could also be the cause of my small fiber neuropathy, but the SFN became symptomatic long before the Sjogren’s did, so I’m leaning toward them simply being co-occurring conditions. I have to take immunosuppressant drugs to treat Sjogren’s, and while this puts me more at risk of infections, the meds have been helping stabilize my condition so the disease doesn’t continue destroying more of my body than it already has.
I’ve also been officially diagnosed with POTS. I finally took my cardiologist’s advice and tried medication, and I was mad at myself for not trying it sooner. I’d had no idea of just how dizzy I was all the time until, suddenly, I wasn’t. After the first night of taking fludrocortisone, a corticosteroid, I woke up literally the next morning feeling much better. Heat and humidity can still trigger episodes, as can having to sit or stand for too long, but I’m no longer losing my balance all the time. My heart rate still jumps up 30 bpm or more whenever I stand up, my heart rate is still elevated most of the time, and showering is still difficult, but I’m not nearly as much of a fall risk anymore.
I do have high blood pressure now. I had to endure some mild anaphylaxis before figuring out I’m allergic to metoprolol and nebivolol, which was awful, because if I could ignore the allergic response, metoprolol made me feel better than I’ve felt in over a decade. I take a different blood pressure medication now that controls my blood pressure, but it doesn’t help me feel any better. I would very much like to find a way around the metoprolol allergy or find another prescription drug that could make me feel that way. I had energy! I could think clearly! I was sleeping really, really well! The only thing I got to keep with the new medication is that I’m sleeping better than I have in years. It’s still not great – it’s rarely restorative – but for the first time in 10 years, I’ve been regularly falling asleep before 3 am. Ever since my dad died in 2014, I’d been unable to fall asleep before 3 am – it would often be 4:30 or 5:00 am! – but now I’m usually asleep by 2:30 am. So I guess there’s that.
Why did I get high blood pressure after having low blood pressure for so long? Menopause. Because I had a hysterectomy with bilateral salpingo-oophorectomy a few years ago, and apparently, menopause can cause high blood pressure. Even when you take estradiol. Dr. B advised against having the surgery, telling me that it’s unethical to remove healthy organs from a person, but they were not healthy organs. A lot of the abdominal and pelvic pain and discomfort I’d been experiencing disappeared after surgery. I didn’t have a diagnosis for what was wrong in there, but clearly, something was. There were some benign cysts found on one of my ovaries, but not enough for them to call it PCOS. In any case, I got rid of the troublemaking reproductive organs I no longer needed. Getting a diagnosis would have been an excruciating process where they took my IUD out and tried to figure out the problem(s), but I didn’t need a diagnosis to get the surgery, so the results were the proof I needed the surgery.
I also had breast reduction surgery. My breasts had grown to cartoonish proportions, thanks to all the weight I gained while taking Seroquel. I think I was a 42G before surgery. Not sure how many cup sizes I lost, because I don’t need to wear a bra now, but the pain is mostly gone! Or at least, most of the tissue that was painful is gone. I had the surgeon remove my nipples and areolae because of how painfully hypersensitive they were all the time, and I only needed to sign an extra form indicating that I asked for her to do that so I couldn’t turn around and accuse her of doing it without my consent. (She was very surprised anyone would request such a thing, but she’d never met anyone who’d been in as much misery from their nipples.) My breasts are often still in pain, but there isn’t enough of them left to get in the way. They aren’t getting squished by my bed desk or my own arms all the time. So that fades into background pain. I mostly wear compression tops under my outer layer of clothing for the abdominal support, and I bought two bralettes that I can wear for certain medical procedures or when it’s too hot outside to wear a compression top.
The post-surgical biopsy of the removed tissue indicated I have atypical lobular hyperplasia (ALH) in my right breast, so I’m under the care of an oncologist at the recommendation of my breast surgeon. My doctor at NYOH is monitoring me due to my increasing risk of breast cancer. She’s okay with me not taking the cancer prevention drugs that would be contraindicated with the other prescriptions I’m on, but we agreed to revisit the topic in a few years.
I’m in the process of being diagnosed with mast cell activation syndrome (MCAS) because none of the allergy tests I’ve had indicate I’m actually allergic to anything. (I even learned that I’m no longer allergic to penicillin like I was when I was a baby!) When my rheumatologist referred me to my current allergist, she said not to be the one to bring up MCAS, instead referring me due to my growing list of medications I’m allergic to. (The metoprolol was the worst, but not the only one added to my allergies over the last few years.) I’m on enough allergy medications to snow an elephant, but I’m still very itchy in unusual places. Who has itchy armpits all the time? I do. My next step is to try Xolair, which is a mast cell stabilizer, so I’m looking forward to that. But my hives are almost completely gone now, and that is something I never thought would happen. The chronic urticaria I’d had literally every day for over 30 years has just sort of gone POOF.
Gosh, what else? So much has happened.
How could I forget aquatic therapy? The therapy pool at my physical therapist’s office is one of the best things to happen to me in recent times. In my last update, I mentioned the exercises that my cardiologist wanted me to try. I did try them, but even gentle exercises weren’t gentle enough for me. So Dr. B told me to find a physical therapist with a therapy pool, and I did. I love my physical therapist, who is a chronic pain specialist, and I wish I could live in the therapy pool! The water is 91 degrees, which is the perfect temperature for aching bodies. I have a whole one-hour routine that I do twice a week whenever the pool maintenance program is active. It’s the only place I can freely move my body, thanks to the fact that Earth’s gravity is too hard on me. There’s an underwater treadmill that I’m not allowed to use as part of the maintenance program, but it’s my favorite thing when I’m having official insurance-covered pool appointments. The maintenance program is for patients who don’t need insurance to cover their treatment anymore because they’re either better (ha!) or because they’re no longer showing enough improvement to justify more sessions. That latter part is me, but whenever the maintenance program is no longer in session, my pain increases, and my insurance company says I qualify for PT appointments again. I wish I didn’t have to go through the “wait to be in more pain again” part, but that’s US healthcare. At least the pool maintenance program runs for a majority of the year – I only have to go back to PT appointments during the summer. They don’t offer the program over the summer because so many people go on vacation.
I’m finally going to see an autonomic neurologist after years of being told my multiple doctors that I need one. I found out last week that I got accepted into NYU Langone’s Dysautonomia Clinic! I had to answer some pretty lengthy questionnaires, provide orthostatic vitals for several days, and get my doctors to send over my medical records, but I got in. Of course, they don’t actually take my Medicare Advantage plan. I have to pay them and get reimbursed by my insurance company. My initial one-hour visit will cost $900. Oof. But insurance should reimburse me for that. I wouldn’t be able to front the money without my disability benefits, so I am very grateful for SSDI. They don’t take Medicaid, which I have as secondary insurance with a small monthly spend-down. I have the type of Medicaid you get when you have really high medical costs each month but would otherwise not qualify for it. But this could be what I need to find more effective treatments for my underlying neurology, as my local doctors can only treat me symptomatically for all the stuff that’s based in autonomic dysfunction. There aren’t enough autonomic neurologists in the world for those of us who needed them pre-2020. They’re becoming more in-demand now that frequent COVID infections are causing POTS and other forms of dysautonomia as a type of Long COVID.
Speaking of Long COVID, I have it. I protect myself whenever I go out in public. You’d think that a hospital would have protected me, an immunocompromised person, to prevent me from getting a hospital-acquired infection, but you would be wrong. Masks were no longer required in medical facilities when I had my breast reduction surgery, and despite my attempts to secure reverse isolation in recovery for myself prior to my scheduled procedure, the hospital bureaucrats refused. Sure enough, I was very ill exactly a week later. I ended up at emergent care, not just for the PCR test I wanted to confirm I had COVID, but because the doctor I saw for the PCR test wanted a chest x-ray…and what she saw on the x-ray made her want me to get a CT. Of course, they did not have a CT machine at that location, so I had to go to a different emergent care facility. (NY Capital District folks, Malta Med 24-Hour Emergent Care is the best.) I got cleared after the CT – no pulmonary embolism – but I ended up with Long COVID 2-3 months later. I have a distorted sense of taste, which thankfully comes in flares and isn’t permanent. (Yet.) It sucks that it flares more often than it doesn’t these days, but there are times when I can still enjoy my food. The worst thing it has robbed me of is my enjoyment of chocolate. When it flares up, chocolate tastes like nothing to me. It’s been flaring for weeks, as I type this up, and you might not think that a loss of taste is all that bad until you experience it. Especially when food is one of your only remaining pleasures. Also, it’s caused by brain damage. I have brain damage because a hospital refused to protect me after surgery. It wasn’t just negligence. I asked them to protect me, and they said no. And now I have brain damage. Always wear an N95 mask in public. And hospitals, do better by your patients when they are not allowed to wear an N95 respirator in recovery!
I’m relatively stable right now. I’m stuck in bed all the time, but brain fog, medication, and medication side effects have blunted most of my emotions. Which allows the anti-motivation type of depression free range, but I’m not in a perpetually heightened state of anxiety/PTSD anymore, despite living through The Horrors right now. I can’t do much, but I’m also not in severe pain most of the time. My pain is moderate most days, able to fade into the background except when it gets Really Angry. October really sucks for inflammatory arthritis, fibromyalgia, and other pain, but most days, it’s tolerable. (Today, of course, it is not. But I have a NexWave TENS unit that also does IFC and NMES, and IFC is currently keeping my severe back pain at bay before I go in for steroid injections tomorrow.) A lot of that is thanks to the pain clinic that’s done radiofrequency ablation up and down my spine, but also the sports medicine doctor who has been helping me with my shoulder and gave me an injection to clear up the bursitis and tendonitis that was causing sharp, intense pain for months. Them and pool therapy. Have I mentioned that I’d live in the therapy pool if I could?
I’m hopeful that the dysautonomia clinic can help me better than my current treatment regimen. I’m also hopeful about new treatments that are currently in clinical trials or will be in clinical trials in the coming years. I’ll never get back to 100% function, but maybe 50% is attainable. Even 50% sounds incredible when you’re at 20%. (There’s a diagnostic tool that really puts me a little above 20% function, but definitely less than 30% function.) Just have to bide my time until I have more tools to live a better life.