The last year alone I’ve had about 20 doctor appointments, 17 specialist appointments, at least 10 large machine scans, 2 heart procedures, and at least 5 ER visits. I’m heading into year 5 of trying to get my body into working condition, where I’m not in brutal chronic pain or dealing with a new emergency. To complicate things more, I have a rare immune problem called MCAS, which makes diagnosing and treating other illness and injuries pretty difficult. To give a rundown of what the last 4 years have looked like, and the amount of time and energy this has taken out of my life, here’s a little bit of a photo summary.

2020:

Kicking off the pandemic with a little top surgery. This year is mostly normal except toward the end when I start getting a kidney infection.

2021: 

Since the pandemic was in full force at this time I wasn’t able to go to the doctor for a UTI, so I did an online consult and got macrobid, which seemed to help but it ended up being too little too late. From January to March I was in and out of the hospital with bizarre insomnia and heart problems. It wasn’t until the 4th ER visit they figured out I had a kidney infection. I end up being allergic to sulfa drugs, and one more visit and several medications later I was finally in the clear. In April following the infection, I started experiencing worsening tachycardia episodes and began seeing a cardiologist. During this time, just to spice things up, 3 of my 4 of wisdom teeth become abscessed. From April 5th until June 9th I wasn’t allowed to eat solid food. I take out a small loan and schedule for an extraction in July.

At the end of June, the acupuncturist I was seeing for my hip pain accidentally ruptured an ovarian cyst (that I didn’t know I had) while doing a muscle release technique. The subsequent ER visit revealed I had multiple masses around my ovaries. I made an appointment to see an ob/gyn. July rolls around and I get my wisdom teeth removed in the OR under full anesthesia, due to the complications of my teeth being absolutely busted and my MCAS. My double black eyes looked kind of badass though.

The ob/gyn I’m seeing won’t perform my hysterectomy on medical grounds, despite the masses and other complications. I have to begin the long and involved process of getting it covered as a gender-affirming procedure. In the meantime, I go to a lot of ENT appointments to deal with progressively worsening breathing problems. Here’s a photo collage of some of the times they had to put things up my nose, because it’s funny.

After 5 months of back and forth with the hospital, fights with the insurance, multiple meetings for submitting a huge required paperwork packet, and a few reschedules, I finally get my total hysterectomy on October 28th. The surgical pathology report comes back with way more problems than was initially thought, and I’m extra grateful I was able to get this done. In November I get a facial CT in preparation for my sinus surgeries.

2022

On Feb 1st I get my first sinus surgery combo, turbinate resection and bilateral latera implants. 2022 is pretty chill, I mostly have regular doctor’s appointments and labs.

2023:

Another minor year. A lot of regular doctor appointments, labs, and MCAS flares. In April I get my first hip MRI for a lifelong joint problem. I’m also back at the ENT way too many times, getting scoped and doing a swallow study for persistent dysphagia. I get my final sinus procedure in July, an ablation to deal with the remaining chronic tissue inflammation. Did you know they can do seven injections inside your nose? Unfortunately I did spend the majority of this year unknowingly having a prolonged “adverse neuropsychiatric event” from Singulair. That was certainly a time. If you think a large invisible faceless man lives in your hallway, go to the doctor. Just a hot tip from me.

2024

At the end of January I got COVID for the first time, during winter session finals week of course. I have no recollection of my term papers but somehow I got straight A’s. In February I see an ortho surgeon about my hip. More x-rays, we love to be irradiated. In April I get a second hip MRI, this one is an arthrogram where they inject dye directly into the joint. I end up having to drive back an hour later for more imaging. It’s cool I actually love being in the tube. In May I get every possible heart test done, both for my tachycardia episodes and to monitor my left ventricle function (she’s stable). I get an EKG, echocardiogram, stress test, and am fitted for a 2 week cardiac event monitor across multiple appointments.

In June I have a bunch of follow-ups, go over some results, and get a referral to a second heart specialist. I have my first appointment at the Cardiac Electrophysiologist, going over my event monitor results and planning where to go from there. My episodes are clearly caught on the monitor, as well as a lot of PVC’s, but those ones aren’t really concerning. Once again, because of my MCAS, and having tried most other options, the only thing left is a catheter ablation. We schedule that for September. In July while waiting on my heart surgery I see another ortho surgeon, who also declines to treat my cam lesion and labral fraying.

I get my cardiac catheter ablation in September. In hilarious timing, the entire cath lab team accosts me outside the bathroom and pulls me directly to surgery, so I get to walk my ass into the OR myself and climb on the table lol. The cool anesthesiologist lets me be awake for the procedure, so I get to watch the catheters in my heart on the live x-ray. It was pretty sick. They weren’t able to locate the cell clusters causing my tachycardia, so I kind of just got electrocuted from inside of my heart for a while. Afterwards I ate a hospital Denny’s grand slam while lying perfectly flat.

Obi break…some of my favorite photos

October through December is where things quickly unravel, this is the bulk of my current issues. In October I started having insane neck and jaw pain and on and off fevers. I went to the ER a few times, where I was diagnosed with an infected parotid gland and spasmodic torticollis. I received a couple injections and was prescribed Valium for 2 weeks. The valium helped but the pain never really went away. I got a cervical MRI and waited to see a neurologist. At the end of October my testosterone was switched to a different formulation because I was having a mild allergy to my current one. I ended up having a bad allergic reaction to the new injection that required a week long medical intervention. I spend October in a daze, barely sleeping.

At the tail end of all that, on election night, Obi had a seizure and I rushed him to the emergency vet. He got a lot of diagnostics done and they were unclear what the problem was, but his condition was pretty bad so they held him overnight. It ended up that he had carcinomatosis, which is carcinoma that has metastasized. There’s no real treatment for it. I set up an appointment at our local specialist for palliative care. The next two weeks were awful, and I didn’t really work so that I could take care of Obi. I bring him for chemo on Nov. 14th hoping it will slow or prevent some of the more damaging effects of carcinoma, sparing him unnecessary suffering, but it goes terribly. He stopped eating pretty much immediately after, and on the 19th I bring him to the emergency vet and we make the decision to euthanize him while he’s calm and comfortable, and his two favorite people are there. It was devastating, but there was nothing left we could do since they didn’t think he’d survive the night. He leaves next to me and purrs while I hold him. 

I love him so much. he’s perfect.

In December, in yet another ill-timed procedure, I get a heart monitor implanted during finals week. This is also an awake procedure, and somehow WAY more gross than the other one. Still, 10/10 for the cath lab team. This little USB stick in my chest cost $17,000. American healthcare babyyyyy

2025

On Jan 9th my wrist suddenly swelled and bruised while I was walking to the store. Over the course of the day my wrist and hand became totally unusable. I went to the only 2 urgent cares still open during the fires, but one didn’t haven’t an x-ray tech and the other didn’t take my insurance so I headed to the ER. I get x-rays and a venous ultrasound to make sure I don’t have a blood clot. Nothing is broken and I don’t have a blood clot, so I go home with a brace. Everyone is puzzled. I get an emergency MRI, see multiple doctors, and have to wait way too long (until February) to see the hand specialist. I can’t close or extend my fingers for a full month, and the bruising lasts just as long. It’s not until February that I can fully close my hand. I have minor ligament damage and tenosynovitis, but neither of those had caused the bizarre swelling and bruising. The hand specialist thinks I might have rheumatoid arthritis, and I get referred to a rheumatologist, who I’m still waiting to see.