it’s not lupus

I have too much sugar in my blood
I have insulin resistance
UH! Type 2 Diabetes!

I have too much sugar in my blood
I have a broken pancreas that isn’t creating insulin
UH! Type 1 Diabetes!

Type 2 Diabetes
Type 1 Diabetes
UH! Latent Autoimmune Diabetes in Adults (LADA), aka Type 1.5 Diabetes!

We always joke around that it would be just my luck to end up with a super rare and complicated disease, one that requires Dr. House-style intervention. Gill is convinced I have some sort of super-betes, while Ed has been telling me I probably have both kinds, aka Type 3.

So, about that ..

Let me catch you up on what’s happened since my last update. I’ve been feeling better, but my blood is all over the damn place (literally and figuratively). I was told to get myself some peein’ sticks, and they’ve been showing that the bad news is all up in my everything – basically, I’m consistently in the “get to a damn hospital” range. Sad!

I met with Diabetes Man at the hospital on Wednesday for some education. The plan was to learn all about diabetes and how to treat my specific kind of diabetes, but .. well, we don’t know what kind it is. My blood and pee don’t make any sense. I need to take the official “What Diabetes Are You” Buzzfeed quiz, but that can only be requested by your family doctor, which I do not have. Without that diagnosis, I can’t get the insulin I seem need, without which – and this was stressed to me a number of times – DYING WOULD HAPPEN. Which is weird, because Type 2 diabetics – which we all assume I am because look at me – don’t typically require insulin. It was all very complicated and I kept cracking bad jokes that didn’t go over very well because Diabetes Man was too frustrated by my enigmatic nature to appreciate my acerbic wit. We made a deal: I would test my blood at specific times in the day and my pee first thing in the morning and text him the results, and he would confer with Dr. Awesome to find out why the former would say I’m fine when I am so clearly not fine in the slightest and also what do we do with a problem like Kimli (I like to imagine there was singing).

Cut to yesterday morning. Blood is stupid. Pee is stupid. Every goddamn thing is stupid and also I am exhausted. I texted my numbers to Diabetes Man, ate some Cheerios like a toddler, and tried to work. Around 1pm, Dr. Awesome called me.

So, about all those crossed wires and completely opposite advice/diagnoses from Dr. Awesome and Dr. Nice Shoes ..

No one told Dr. Awesome I had been admitted to the hospital. 

Dr. Awesome called me last Friday afternoon, before I was discharged from the hospital. I had assumed the call was because he had been brought up to speed on wtf is going on, which was the wrong assumption to make: the timing of the call was a COINCIDENCE. He had no idea I was literally on a hospital bed at that moment. Complicating matters even further (because me), the whole opposite diagnosis thing was because he wasn’t looking at the results from my overnight stay – he only had info from the week prior, BEFORE I went into DKA.

Still with me? I barely am, and this is my life now.

Having cleared that up, Dr. Awesome said I needed insulin, and I needed it ASAP. Ed drove me to the doctor’s office in North Van, and I was formally issued some insulin pens and instructions on how to stab myself with them. He also talked about my actual, current test results, which are showing weird things that make him think I’m actually a Type 1.5 diabetic – which is a real thing that actually exists and is not just a cute joke we’ve been making – AND that all of this *might* be due to an undiagnosed bout of pancreatitis (which would explain the high red and white blood cell count from the first blood test that started all of this shit). It’s too early to tell, but if my pancreas bounces back, all of this might go away. It might not. In the meantime, I’m on a tiny daily dose of tummy insulin to make my body process the sugar in my blood (like it’s supposed to do when it’s not being a fucking slacker). What comes next? Your guess is as good as mine.

None of this is officially official without the test, but all signs are pointing towards Type 1.5 diabetes. There’ll likely be a ton more back and forth as things get sorted out, including the medication aspect: we’re not sure if the peanut butter was making me sick at all, as it could very well have been coincidentally timed with my descent into DKA. I don’t know. What I DO know is that I’ve had to cancel my trip to Seattle for next week, because if the insulin isn’t doing the job and I start feeling all acidic again, I have to go to the ER immediately .. and call me crazy, but I just don’t want to try out American healthcare at this point in my life.

I’m super glad we’re getting somewhat closer to a diagnosis/solution, and that Dr. Awesome and Diabetes Man are both helping me through this. Still, it’s hard not to throw myself a little pity party now and then – it’s been a rough month. I was really looking forward to going to Seattle, and I’m tired of feeling like a ticking time bomb of rotten cells. I’m worried that I’m missing too much work for appointments and emergency consultations. I feel guilty as hell because I screwed up Ed’s birthday weekend, his actual birthday, plans he had yesterday, and potentially work-related stuff for next week. Every little twitch and twinge makes me think I’m about to drop into a funky fresh coma of phat death. Stresses: I have them.

Not sure what I’m going to do with all the character this is building, though.

peanut butter jelly time

Well, that was fun: last Thursday I ended up in the hospital overnight because my blood had turned to acid.

Acid_Spit_Xenomorph

literally me

Here’s a handy timeline of all the bad that went down over the last two weeks, starting with the second blood test:

  • Tuesday the 16th: have blood drawn again. Pee in a cup for good measure.
  • Wednesday: get a phone call. “YOU’RE TOTES DYING! GET THEE TO A NUNNERY HOSPITAL!”
  • Wednesday night: you got the beat(us)! Take these meds, which every single person with diabetes takes with no issue. They’re foolproof. Also, change everything about your life and never enjoy food again.
  • Thursday: be sad. Dr. Awesome’s office calls and wants to see me on Friday. I’m probably in trouble.
  • Friday: Dr. Awesome doesn’t want me to take the ER meds. He wants me on two drugs: the one suggested by Dr. ER, and a new experimental secret science drug that totally won’t lead to super powers. Instead of taking a whole series of new pills, Dr. Awesome prescribes me a combo pill that contains both the common drug (peanut butter) and the new one (jelly):
ahXvG

life has never been so convenient and unnecessary

I started taking the new drug on Friday. By Sunday night, I started to feel sick: crazy nauseous, full-body ache, throwing up, total brain fog. I figured it was just my body adjusting to my new lifestyle of no fun, because that’s a thing that actually happens. I was assured by the internet that yes, this sucks, but it will definitely get better.

It didn’t get better.

By Wednesday morning, I wasn’t able to keep anything down – all food and liquid was being expelled from my mouth in Exorcist proportions. I hadn’t been able to work all week, except for some emergency edits – and they took me forever, because I just could. not. think. Everything was so hard, both physically and mentally. I was in dire shape, but still assumed it was a keto flu that I’d eventually get over, and the PB&J pill would settle me down. I was taking the PB&J twice a day – 2x500mg to start, then ramped up to 2x1000mg after 5 days.

Thursday was scary. I don’t remember much of it. Ed had called Dr. Awesome’s office to find out if I was supposed be all dying like this, but didn’t get an answer so he called the BC Health Line to ask a nurse. Nurse said “hospital time!”, so he loaded me into the car and took me to the ER. I was seen almost right away, which means I was probably in really bad shape – again, I don’t remember much.

I spent the night in the hospital. They took all of my blood so many times I lost count, as well as checking my blood sugar every hour. The doctors were confused as to how peanut butter could cause all my symptoms, because it’s the drug everyone uses – and even better, when Ed explained I wasn’t just taking peanut butter but peanut butter AND jelly, there was more confusion: they’d never heard of jelly, let alone a PB&J pill. Clearly, it was the jelly causing all my problems.

My blood was tested, and they found I was supercalifragilisticketoacidosis: the medication had done such a good job of removing sugar from my blood that it turned it acidic, and I can only assume it was eating me from the inside out.

I was put on an IV to combat my dehydration, insulin to fix the lack of insulin in my body, and kept overnight so they could harvest my blood while I slept. Twice during the night I had to be woken up and given juice to drink, because my blood sugar was too low.

In the morning, Dr. Nice Shoes (he had nice shoes) came by to explain what happened: I was having a bad reaction to the jelly, so I should revert to just taking the peanut butter. After they were satisfied I was more or less stable, I could go home. In the meantime, here is some yucky breakfast and we will take more blood.

I fell asleep at some point, and woke up to my nurse and Dr. Nice Shoes standing over me: they weren’t going to leave until I started eating my yucky lunch. I still had absolutely no appetite at this point and what felt like bricks in my stomach, but Ed showed up with Diet Coke so that helped me choke a few bites down.

Dr. Nice Shoes suggested I fill my original prescription for peanut butter when I got home, and take it according to the original instructions. I should be feeling better in no time, and get back to doing whatever it is I do when I’m not busy dying. HOWEVER!

Dr. Awesome called me up and was all “wtf” “I know, right” “how we gon’ fix you”. He wanted to go in the other direction: don’t take the peanut butter at all, but just the new prescription for jelly only. I confessed my trepidation: I don’t ever want to feel like I did that day and other songs from Blood Sugar Sex Magik (pun actually not intended, but that worked out quite well didn’t it). I was worried about taking jelly, because the hospital is certain that it was the culprit for my near-death experience (2017 edition). Dr. Awesome disagreed!

What to do. I told Dr. Nice Shoes about Dr. Awesome’s advice and my subsequent fear of jelly. He understood the hesitation to prescribe me peanut butter because of my stupid heart, but stood by the “jelly = bad” and diagnosis left me with a couple days’ worth of peanut butter to take until my jelly came in. They gave me 1000mg of peanut butter with my lunch, and some to take home in a delightful doggy bag. I didn’t know when the jelly prescription was going to show up, so I halved the peanut butter dose to make it last longer.

Then I got sick again.

Saturday afternoon we had a late lunch with friends to celebrate Ed’s birthday. I started feeling really weird before we left the house, and by the time we got to the restaurant I was completely out of it. My insides felt all weird, I was nauseous, and I could feel myself getting dumber by the minute: my brain just couldn’t even. I had a hard time forming sentences, and had to pause mid-thought to remember what I was saying. IT SUCKED. What the fuck! I was supposed to be all better!

The lesson here is that I should never, ever doubt Dr. Awesome, who is called that for a reason. He was RIGHT: it wasn’t the jelly that was making me sick, but the peanut butter. Because I just have to be a special fucking snowflake, the drug that works on millions and millions of people with no side effects turns me into a drooling, acidic moron who can’t do food of any kind. Well that’s just fucking SUPER.

I stopped taking the peanut butter, and am now taking a small dose of jelly each day. I only have a trial supply, so if I’m still alive by the end of next week, I’ll tell Dr. Awesome and see if he can refill the jelly prescription for me. I’ve been off peanut butter for a day and a half, and I definitely feel better: not nauseous for the first time in a week, able to eat food and keep it down, and can do math again. I’m still pretty tired and weak like kittens, but I can see the end of the tunnel (and not in a morbid death way).

If I am going to have diabetes, I apparently am going to have the FUCK out of diabetes.

pbj

it’s the end of the world as we know it

.. and I’m really quite upset about it, thank you very much.

What started as a purely vanity-driven inquiry has turned into the actualization of my biggest fear. It sucks, for so many complicated, irrational, deep-seeded reasons. Let’s explore them!

I saw Dr. Online about some weird symptoms I’ve been having: thirst, a craving for salt, thinning hair, a second head growing out of my left knee. Nothing I found online told me exactly what kind of cancers I had, so it was time to ask an expert .. who didn’t have any answers, so she requested I have some blood work done.

The results came in the next day, and showed that I had too many blood – but nothing drastically alarming, or anything that would account for my symptoms. I was asked to follow up with Dr. Online (who was a man this time), who didn’t see anything unusual in my results .. so he requested a second blood test to see if my levels changed. He also requested a urine test, because peeing in a plastic cup is the most dignified thing you can do in a public washroom. Off I went.

I received a phone call from Dr. Online’s office the day after my tests. No big deal, they said, but you need to go to the hospital RIGHT NOW OR YOU WILL DEFINITELY DIE. Okay then. Turns out one of my bloods was so off the chart I was in immediate danger of falling over all dead. That would seriously put a crimp in my day-to-day schedule, so I packed up a bunch of phone chargers and had Ed drive me to the Emergency Room, one of my least favourite places on earth.

There was a lot of waiting. Someone came around and took more blood (which I am running low on at this point). I peed in another cup – I am not getting any better at it, so I mostly just peed all over myself – and waited some more. Wait, wait, wait. Lots of waiting. Good times.

Eventually, a flesh doctor came in and delivered the news: I have diabetes. Not pre-diabetes or diabetes of the butt or kawaii diabetes, but full-on here’s-your-moustache Wilford Brimley diabeetus.

the internet is an interesting place. i didn’t have to search hard for this image.

So. That was the emergency, then: my blood sugar was in the Danger Zone. They kept asking me if I noticed myself peeing more than usual, which is entirely unhelpful – not only am I on medication that’s SUPPOSED to make me pee all the goddamn time, I have a tiny, tiny bladder. Pee frequency (peequency) is not something that would ever cause me any alarm. The other symptoms I’ve been having are so vague – headaches, grumpiness, lack of sleep, exhaustion – that they can be explained away by anything. I have headaches because I always forget to wear my glasses in front of the computer. I’m grumpy because I’m hormonal and people are jerks. I can’t sleep because I stay up way too late every night playing games on my phone, and I’m exhausted because I’m not getting enough sleep. I’m fiiiiine.

Except I’m not fine, and now I have to go on even more medication and change my lifestyle and not eat delicious things. Also, I kind of hate myself and can’t get past the blame stage: this is all my fault because I am fat and gross and stupid.

Logically, I know better. There are other factors at risk: my age. My mother, who is the Canadian Diabetic. I’m an Aboriginal Hispanic South Asian Asian of African descent. I got them big ol’ depression, and that tiiiny little heart issue. I’m a fatty who really likes garlic bread. The only box left unchecked in the entire “you’re gonna die” list is giving birth to a big ass baby, and frankly I don’t remember what I do every single year – there could have been a big ass baby in there somewhere.

So, yeah. I was always at risk of diabetes, but it was still one of my biggest fears. I’m not so much worried about my health as I am deeply ashamed of myself and wanting to hide in the closet until everything goes away. That’ll work, right?

I’ve never been a big fan of myself, but this is .. something else. But why?

A Tragic Backstory

It’s been drilled into me since the age of 7 that the very worst thing I could ever be was fat. Then, as if to spite my mother, I was a fat child who was fat on purpose, just to make my mother look bad. You can’t love a fat child! No one would blame her if she gave me away. It didn’t matter what else I was – serial killer, bed wetter, space cowboy – as long as I was thin. But because I wasn’t thin, my other qualities didn’t matter. I haven’t been 7 for a very long time, but my mother’s words echo in the darkest corner of my mind and get louder every time I have a bad day. I’m fat, so nothing else about me amounts to a hill of beans. On my good days, I can acknowledge the positive – I can be cute, sometimes I am smart, I have a funny – but even then, underneath all of that, I am a disappointment because I am fat.

I have diabetes because I am a big fat lump who brought this on herself by sucking so hard as a person. The shame is clinging to me like plastic wrap. It’s suffocating. I can’t free myself, can’t see past the behemoth I’ve become. I’ve thrown my life away to be a statistic in US-Fucking-A Today. I deserve this.

I know better, I really do. If someone else shared this news, it would be met with sympathy and encouragement. Those don’t apply to me, though, because this is my fault.

What Comes Next?

I have a prescription to fill, and an appointment with my heart doctor tomorrow. I’ve been doing a lot of reading, and need to stock the house with food I can actually eat. I had planned to clean out the pantry this weekend anyway, so I’ll toss out the snacks and carbs while I’m in there and replace them with .. I don’t know yet. Kale, I guess. Can’t wait.

I need to figure out my head and try to shake off the shame and guilt I feel. I won’t be telling my mom the news – I’m not really in the mood for an “I told you so” lecture. Keeping things from my mother is my standard MO; she doesn’t know about the heart failure (also my fault, obviously). I’m mostly really good at hiding my demons, but this particular one is not something I’ve faced before. This post is basically step one: admitting to myself (and, uh, the internet at large) that I have diabetes. The thought of sharing that – confessing it – to the world sort of makes me want to throw up and die, so I guess I’m on the right path.

Ugh. I really fucking hate kale.