So tomorrow I am going to be talking to some medical students, because according to the endocrinologist at the obesity clinic, I have “all the endocrine things going on” and am “fascinatingly complex” and she thinks I’d be a great experience for the med students to talk to. I think that’s a compliment? Regardless, I’m happy to talk to them, because if they get some good out of it and other people in my situation get some good out of it, it’s worth it.
Not that there are many people in my particular situation. I may be fascinatingly complex, but I’m also frustratingly unique. But it has been brought to my attention by people whose opinions I actually pay attention to that it might be helpful to have my experiences written down somewhere, even just for myself, so here we go. Medical snowflake diaries. Like the Princess Diaries, but with less social events and more complaining.
For now, a list. The list that makes medical professionals make interesting, worrying faces at me when they read it:
Type 1 diabetes mellitus. I’ve had this since I was 10, which hasn’t stopped multiple doctors listing me as type 2 on their notes solely on the fact that I’m fat. Frustrating. I’ve been diabetic for 25 years now, and was very uncontrolled as a teenager and young adult, which has led to a lot of complications; I have gastroparesis (nerve death in my gut, leading to a lack of appetite, delayed gastric emptying, and attendant food and weight issues), some eye problems, and some peripheral neuropathy, but remarkably little kidney or liver impairment, which is nice. Let’s try to keep it that way.
Heterozygous for Factor V Leiden. This is a blood clotting disorder that we discovered when I was 25 and ended up in hospital less than a month after starting on the Pill, with a blood clot in my lung. Very much not fun times. It turns out my father had a bunch of clots in his lifetime, which makes sense with me being heterozygous for FVL. So I’m more liable to throw clots, and have to be on Warfarin for the rest of my life, which is a pain in the arse. Warfarin is contraindicated with everything. Although it does mean I can say I’m taking rat poison, which is fun. You take your wins where you can.
Polycystic ovarian syndrome – maybe? Or maybe ovarian insufficiency. It’s difficult to be certain. Regardless, I have very low oestrogen levels, to the point that when we tested them when I was 23, when my then-GP first diagnosed me with PCOS, his first response was “…are we sure you’re not going through menopause?” I’ve always had horrendous cramps, but it’s possible that that’s more to do with endometriosis than PCOS, because I don’t exhibit several other key symptoms of PCOS but I *do* have key symptoms of ovarian insufficiency that cross over with PCOS, so… it’s another thing to investigate. Regardless: menstrual heckery, infertility, cramps, to the point where I utilise birth control to just not have periods anymore. Between the cramps and the excessive bleeding after I started taking the blood thinners, it was just not a thing I could handle. Nope.
Pernicious anaemia. Look, I just don’t absorb anything properly, but especially iron and B12, apparently. I have so many things that would have been a death sentence 100 years ago. And so many things that show up in Downton Abbey and make me go GASP. Lord Merton! You’re not allowed to have pernicious anaemia! You have to marry Isabel!
And then there’s the newest thing: lymphocytic hypophysitis, which is causing adrenal insufficiency and hypothyroidism. Adrenal insufficiency which is, I have learned, the cause of SO MANY OF MY HECKING SYMPTOMS over the last, oh, five or six years. Including the ones that I had invasive investigative procedures for, that came back with no physical pathology, that the specialist then went “idk, maybe you’re just lactose intolerant, don’t come back. No, I haven’t found an answer for your chronic terrible diarrhoea. Why are you upset with me?”
So I’m still a bit salty about that.
HOWEVER. Remember that ovarian insufficiency I mentioned? That, plus hypophysitis, plus type 1 diabetes, all point towards this fun little thing called autoimmune polyendocrine syndrome. It’s something my endocrinologist and I are investigating. It basically means NOTHING IN MY BODY WORKS RIGHT.
Seriously, I am so badly put together. I am a walking argument against intelligent design. Although I try not to say that around doctors. They tend to get upset and ask me if I need to see a therapist.
So anyway. This blog is going to be a place for me to talk about the vagaries of a body that is very badly designed, probably in ways that are going to be alternately irreverent, ranty, occasionally a bit gross (there will be butt talk. Nobody ever warns you, when you’re becoming chronically ill, how much butt stuff there is, and not in a fun way) but hopefully illuminating or useful for someone, even if that someone is only me.
The Medical Snowflake Diaries 