Wellness Wednesday – Medical Catchup

This post will be long and is primarily for my own benefit of keeping all this info in one place as I have WAY too much going on medically right now. Feel free to skip this.

My gastro doc believes that I have mild to moderate lactose intolerance that has been getting worse over the last few years. I’m in the process of trying to switch to an entirely dairy-free diet as well as gluten-free, and I’ve definitely seen some benefits. I’m also trying out lactaid as a potential help when I need to eat out and will likely have some dairy exposure. The hardest thing so far is trying to find a df substitute for greek yogurt.

Left foot is still swollen and painful when used, and to further that along, even the mildest sliding on rocks causes deep internal bruising that takes weeks to heal. (Pic is several weeks after a sliding injury  on 4/3, and now, almost six weeks later, this bruise is still there, though finally lessening.) I still have major sciatica on the right hip, and the tendon by my hip flexor/psoas area is so painful and tight that I can only lift my left leg up a couple inches. I have to use my hands to grab my leg and pull it upwards to do simple things like put on shoes. At least it’s only the left side that does this, but my PCP has put in orders to get x-rays of my left hip to see if we’re working with some kind of fracture there. I doubt it. Frankly, I think I need to get off the medication that causes joint pain so I can get back to yoga and develop some strength and looseness in those tendons again!

My sleep study came back as confirmed obstructive sleep apnea, and my pulmonologist ordered a cpap back in late March. It was approved by the insurance within days, but I still hadn’t heard anything for all of April about the cpap. Finally, I spoke with the doc’s office again and they gave me the name/number for the medical equipment company. Turns out they were waiting for me to call them to give them some information before they contacted me. Yes, I mean exactly what I said there. For some reason, they need my doctor to submit their reasoning behind why they ordered the sleep study in the first place before they can give me the cpap, which makes no sense whatsoever since 1) I have confirmed apnea and 2) the insurance has already approved giving me the device! So now I continue to wait. Again.

Because of the apnea, I end up breathing through my mouth a lot of the night, which has caused major problems with my teeth as they’re super sensitive to dryness. My right canine is in so much pain right now that I have to drink through a straw under my tongue to avoid any cold liquid touching the tooth. If it gets touched, or bumped, or I press against it over my lip, it sets off a zinging pain that lasts for 5-10 mins. Ugh. I see the dentist at the end of May so I hope they can do something.

I’ve met with the renal specialists twice now, and taken a bunch of tests, including a second 24-hour urine test, and I’ve been labeled as a “special case.” My test results are abnormal, but rather than fitting into a category they can test for, they fall into the category of “traumatic brain injury.” (Don’t ask me why that’s a category. I guess if you’ve had a major brain injury or brain surgery/tumor, it can cause the urinary results that I have, she said.) Of course, I’ve had no brain injuries, and I’ve had recent CT scans on my entire head, so we can rule out tumor as well. Ultrasounds of my kidneys show that everything is in perfect working order, so the next steps involve a third 24-hour urine test and some genetic testing that my insurance may or may not cover. Sigh.

Speaking of CT scans of my head, I’ve had a lot of work done to try to figure out what’s going on with the three lumps at the spot where my jaw meets my ear. I’ve had multiple ultrasounds since last October, and I was told they were three swollen lymph nodes, only no one could figure out why they were swollen, especially as they didn’t decrease with antibiotics or steroids. When I had the CT scan done, the radiologist noted that the lumps had increased from 8mm to 10mm since my MRI in Nov 2018, which means that the lumps have been there for at least several years. My doctor suspected that the lump was on the parotid gland, so instead of sending me to oncology for a biopsy, she sent me to an ENT, who ordered a fine-needle biopsy. (That was an interesting experience. The place looked like an Amazon warehouse, with aisles made of boxes. The room had a medical table for me to lay on, but the rest of the room was clearly an office with more boxes stacked everywhere. I was literally the only person wearing a mask, in a supposed-medical setting. The “surgeon” didn’t even wear gloves as he did the biopsy.)

The biopsy came back benign, but can become cancerous, and the sooner we remove it, the easier the surgery and the less chance of side effects. We didn’t test the other two lumps (not sure why?) and the ENT is assuming they’re just lymph nodes that “happened” to be swollen at the time of the imaging. (You know, the imaging done in Nov 2018, then Oct, Nov, and Dec 2021, plus Jan 2022, with no change in size except the 2mm growth from 2018 to present…) In any case, I have to get surgery this fall, which will involve an incision that looks similar to this drawing. It can be done outpatient, if I wish. (No.) If the jaw’s nerve is damaged, I’ll lose muscle tone in the left side of my face, like I’ve had a stroke, and I’ll need plastic surgery. There’s a 20% chance I’ll get a weird side effect where the salivary nerves regrow into the sweat glands instead of back to their salivary glands, so that I’ll sweat on my left cheek every time I eat. Fun! There’s a small chance that the salivary nerves will overgrow resulting in “first bite” syndrome (or something like that), where the first bite of any meal I eat will over-excite the nerves and cause excruciating pain.

In other words, this sucks.

My current RA medicine is not helping and the insurance is still messing everything up, so now I’m in a nasty conundrum where the insurance is attempting to get paid my deductible multiple times from multiple sources. So I’m getting off that medicine now, and I’m supposed to start infusion treatments, but turns out I can’t really do that either because the coinsurance would be almost $400 per infusion unless I go through another co-pay assistance system, which is how my insurance screwed me over last time, so I’ve said nope. I’d rather go without medicine. I’m frankly getting to the point where I don’t believe a word rheumatology says anymore. Because of the mass on my parotid gland, they’re now saying that I have sjogren’s syndrome in addition to RA, and I’m not sure I have any of them. I think my body is presenting with autoimmune symptoms because it’s fighting something I haven’t figured out yet, just like it did in those 11 years of tooth infections. And I’d rather just get to the root problem, rather than try to treat symptoms. I sometimes feel like I want to scream, “I’m not looking for solutions, I’m looking for answers! If you have the answers, the solutions present themselves!” Sigh.

Okay. That’s it for now. (I say as if that isn’t already too much to be getting on with…)

About Amanda

Agender empty-nester filling my time with cats, books, fitness, and photography. She/they.
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