Reflections

It’s been a bit over a year since I emailed my endocrinologist to tell her I genuinely thought I was dying, triggering a month-long hospital stay under slightly false pretences (hospital paperwork requires you to be admitted for a reason, and doesn’t accept “extreme malaise of unknown cause”, so my endo put down “fluid management” and proceeded to do no fluid management).

At the time I sent that email, I’d been experiencing severe pitting oedema in my stomach for a few months. It was so bad that when the Engineer helped me shower, his fingers left centimetre-deep imprints in my lower abdomen that took almost a minute to subside. I’d removed an infusion site for my pump that day, a tiny subcutaneous needle that doesn’t so much as bleed under normal circumstances, and that site proceeded to leak clear fluid continuously for a solid month, well into my hospital stay. It soaked my clothing. There was no “wound” we could fix, and putting a dressing on just ended up with a soaked dressing; there was just so much free fluid in my abdomen that it took the tiniest rupture in my skin, that one infusion site, and it was like a crack in a dam.

Tests in the hospital revealed a lot. Things had been going downhill for a while, and a lot of it comes back to my pituitary and inflammation. A lot of my health problems are the infuriatingly vague “inflammation”. That weird tongue thing (benign migratory glossitis, or geographic tongue)? Inflammation. Muscle pain? Inflammation. The bursitis? Lots of inflammation. Some of my digestive issues that we initially thought were food intolerances? Yup, inflammation. And the rare condition I have wherein my pituitary is, to use the French, The Fucked? Massive inflammation.

So, the timeline of my body going “lol no”. Things were going pretty okay back in 2018. I was working from home at a pretty good rate, going out on my own. Using a cane, sure, but walking comfortably enough. 180 kilos, not ideal, but managing, and getting out to swim. At this stage, the indicators of the hypophysitis were easily missed – low oestrogen, thyroid problems, chronic gastric problems that, in retrospect, were almost certainly minor adrenal events. Taken in isolation, they just looked like typical comorbidities – diabetes and PCOS go hand in hand, as do diabetes and thyroid problems. The gastric issues could have been gastroparesis, and probably were, in part. We heard hoofbeats and thought “horses”, and in most cases would have been right. I’d had low oestrogen since I was first tested at twenty, after all – it made sense that it was just PCOS, since I had plenty of other indicators.

2019 was the year of Hello, I Am Inflammation. We’re not sure what triggered it, but I developed severe bursitis in both shoulders, which is, of course, inflammation of the bursae. My gastric problems also got worse. The gastroenterologist I’d seen a few years back had gone “no signs of physical issues, maybe try cutting out dairy, don’t come back”, which was entirely unhelpful. I lost almost all range of motion in my shoulders and became unable to do my transcription work, which did a huge number on my mental health. Being officially disabled is hard, and not just because the paperwork and process is designed to make you g8ve up. Several rounds of steroid injections into my shoulders and physical therapy eventually helped with my shoulders, but the bursitis didn’t clear up completely until The Event of 2020.

A side event in late 2019 was the weight loss clinic; I spent a few months on a medically-supervised very low calorie diet and lost exactly no weight. That diet ended in April 2020, when I presented at the emergency department with what I assumed was a very bad case of gastroenteritis. I don’t know why they got in touch with my endo or why she ordered the tests she did, but I’m glad for both, because the results that came back showed catastrophically low cortisol levels. Adrenal crisis often presents with stomach cramps, gastric distress, and severe headache, all of which I was displaying. Steroids helped. But I didn’t have the other symptoms consistent with primary adrenal insufficiency, so we had to do more tests.

I’m very lucky to have the endocrinologist that I do; she specialises in rare endocrine disorders. Hypophysitis is very rare, and most doctors wouldn’t have picked it up. But it explained a lot. The pituitary controls a lot of hormones, and if mine had been on the decline for a while, it would encapsulate several things we’d previously thought were separate-but-linked conditions – the low oestrogen, the thyroid issues, the gut problems. Going on steroids made a lot of other things get a bit better too, which strengthened the hypothesis that a lot of my issues stemmed from inflammation.

The adrenal crisis in 2020 was my pituitary’s last gasp. Things went steeply and rapidly downhill from there, coinciding with Covid. I wasn’t hit by Covid, but lockdowns meant that I couldn’t see my doctors in person, and as my health worsened, I became less and less able to leave the house anyway. We lived up a flight of sixteen stairs. In 2019, I could handle those stairs fine. By 2021, I had to have a chair at the top and the bottom of the stairs in case I collapsed.

This wasn’t a matter of breathlessness or being “out of shape” or whatever people usually think when they see a fat person struggling on stairs. Not that it would have been any different if it had, but that wasn’t what I was experiencing. My legs were too heavy to get up the stairs without starting to shake. I would have to drag myself with my arms; if there was no rail, I couldn’t manage stairs at all. With each step, my heart would beat harder as my legs shook worse, and my vision would swim. I stopped leaving the house unless I absolutely had to because every time I did, I wasn’t sure I’d be able to get back.

My energy levels went through the floor. My appetite was nonexistant; there were days I’d eat one meal, and that only because it was dinner and the Engineer and the Collector were there. I couldn’t stand up long enough to make a sandwich without my back starting to hurt and my heart rate sky-rocketing, and I didn’t want a sandwich anyway.

Somewhere during early 2022 I was diagnosed with POTS, and that was a minor game-changer. Going on meds for that helped a little. What helped more was having a cardiologist who actually listened to me (my previous cardiologist still had me down as a type two diabetic when I eventually fired him after six years), who didn’t blame everything on my weight but still acknowledged the problems my weight caused, who worked with my other doctors to try to find solutions.

Things still got worse. I was hospitalised for a week when a cellulitis infection in my leg went septic, and that hospitalisation was fairly traumatic, between nurses who didn’t know how to treat hypoglycaemia to the nurse who insisted on telling me that I was so sick because I was fat. Being on the infectious diseases ward during Covid was very scary and isolating. Although they, at least, had a scale that could handle me, rather than making me go to the outdoors freight scale the way every other ward seems to have had to do when I’ve been in hospital.

Come to September 2022. I’d been housebound for almost two years. I’d been using a wheelchair outside the house, since walking set off my heart rate too badly and made my legs so weak that I was genuinely afraid I’d collapse. Inside, I’d been pretty bedbound for over a year, too fatigued to do much but play my Switch and sleep. The only positive was that because of my neuropathy, my actual pain levels were pretty minimal. But I was pretty sure I wasn’t going to see forty.

So I emailed my endocrinologist. She took the mention of oedema and used that to get me admitted to the endocrine ward “for fluid management” so that I could get seen by a team of doctors and maybe finally get some answers. We got the call saying to come in, and then, in the parking lot, got called again and told “uh, sorry, we jumped the gun, can you come in tomorrow?”

I had a breakdown on the phone. I told them that I didn’t know if I could get back into my house, that I would spend the night in the family room if I had to but I couldn’t go back home. I think I scared the poor nurse. The Engineer actually said that if we needed to, we’d go get a hotel room for the night. But they sorted it out; we waited in the family room on the ward for a few hours and they got me in.

That hospital stay was both good and bad. It was good because it set a lot of balls rolling and got me the start of a lot of answers; it was bad because it triggered a lot of trauma. A surprising number of nurses didn’t know how to deal with diabetes on the endocrine ward. None of them had seen a pump before, although I’m not surprised by that, although I did not appreciate getting into an argument at 3am with the nurse who kept insisting I had to turn my pump off because my blood sugars were 6 and I wasn’t eating anything because I was trying to sleep. I had a bad fall and gashed my leg open, and the resulting wound was mismanaged, complete with the implication that I should have reminded the nurses to change the dressing while I was recovering from the balloon insertion procedure. And they had to weigh me every day, which involved taking me down to the outside loading dock and the freight scale, because apparently nowhere had a scale that can handle bariatric patients, despite me being able to buy one on Amazon that is in my bathroom right now.

Still. I got some answers; my problem is complex and multifaceted, but we can manage some of it. It’s hormonal, because of my pituitary, which controls so much. We deal with that by reducing inflammation as much as possible and replacing the things I can’t make myself, like insulin and thyroid hormones and oestrogen. It’s physical – parts of my stomach were dead or dying, and not sending the proper signals to my brain to say “hey, we have enough food”. My body basically never thought I had enough food to survive, so it held onto everything. The gastric bypass removed the useless parts of my stomach and hey, suddenly now I have appetite signals again, and fullness signals. And then there’s all the conditions I have that just make health complicated; we manage that by, well, managing that. Losing weight will help with some of it. Meds help with some of it. My DBT and mindfulness helps with some of it.

So, a year and change after that hospitalisation. A month after the gastric bypass. I’ve lost 70 kilos. My body looks and feels different and I’m not sure how I feel about it yet. I’m having to relearn how to eat, because we redesigned my digestive system and it doesn’t quite work the same way anymore. I can tell there’s a difference in my function – I’m walking differently, and I can sit up at my computer for longer – but I’m having complicated feelings about how fast I “should” be recovering from major surgery. I don’t like looking in the mirror because I don’t know if I see a difference but the Collector assures me there is one.

This isn’t a negative post. It’s not an “everything is great!” post but it’s not a doom-and-gloom one either; things are going well, all things considered, but like any major change, it’s complicated, and I am having complicated feelings about it.