#who knew that medical disorders aren't something put on this earth to punish us for our actions?

[pigeonfancier]

I got referred to the gastro who diagnosed me with pancreatitis, back in 2015, and went in for the appointment yesterday. It sure was something.

When she asked me about my chart:

Her: Your chart says autoimmunal pancreatitis, but you don't have IGG4 symptoms.

Me: Yeah, I wanted to ask about that, because there's a lot of different terms, and I wasn't sure which one I should use. Autoimmunal is what I was told (BY HER, IN 2015), but it isn't IGG4, yeah. What do I call it, then, since it's not acute, and the other specialists said chronic is for substance abuse derived pancreatitis?

Her: I don't know.

Me:

Her:

Her: [to the nurse] Just write down hereditary pancreatitis.

Upon asking why I came in, and my response of pancreatitis management:

Her: Are you taking enzymes?

Me: I was, but I'm not right now. It seemed like they were causing me more pain after awhile, instead of lessening it. Is that a thing? Or was I somehow taking them incorrectly?

Her: I don't know.

Me:

Me: Well, I wanted to find out about how I can manage it better, if there's a way outside of enzymes? I take 6-8 Tylenol daily, and I eat a very, very low fat diet, but neither of those are ideal long-term, and I'm still having to manage pain through Tylenol use. I heard from other patients that they've been prescribed steroids, and that's helped push the condition to remission? I was hoping I could try that?

Her: Steroids only help if you have inflammation, and they don't do anything if you don't. Do you have inflammation? [pause] Do you still have enzymes?

Me: I have an older bottle, yes -

Her: [long pause] I really can't tell if you want a new enzymes prescription or not?

When I told her that I was told to come back to her, because I might have Peutz-Jegher and they were testing for it, but I was told I needed to get my pancreatitis more in remission to check for full symptoms:

Her: Why would you have peutz-jegher? It's hereditary. Does anyone in your family have it? Someone in your family would have to have it.

Me: The dermatologist thought I had it, because sudden appearance of dark spots on my lip. I'm not sure if it's familial, but it seems plausible? They have some genetic markers that might indicate it, apparently, and there's a bad history of cyst disorders, including in one of my cousins, so they ran a genetic screening thing on me -

Her: Cysts? Peutz Jegher is a vascular disease. If you're not having constant nosebleeds or bleeding, you don't have it.

Dear reader, Peutz Jegher is not a vascular disease.

I'm kind of glad she promptly started asking me about nosebleeds, then derailed the rest of the visit after that into making sure that, if I have PYS, I go ahead and go to a gynecologist yearly, to make sure that I don't get uterine or ovarian cancer. Because if I get ovarian or uterine cancer, that can impact my fertility, and that'd be just terrible.

Because that's what I'm really worried about, here. Not the fuck-you-high cancer risk of it, or the constant Tylenol usage right now, or figuring out how to not constantly have my pancreas taking a bat to me.. it's popping out sprogs. Because when you potentially have multiple, very inheritable genetic diseases, that's definitely what you want to do..?

IDK! I was convinced my research was incorrect and I was being a dipshit, because she was acting like I was. And if you push me persistently enough in any discussion, I will start doubting myself, because I am a reed in the wind. But the very firm declarations that PJS has nothing to do with cysts, and is entirely a vascular disease, related to your veins and hematomas [?!], was thankfully enough to make me realise.. oh, no, okay, I'm not dumb, she just doesn't know what the fuck she's talking about here.

It's fiiine. Genetic testing is also covering pancreatitis, so. Promethease has all of my aunts with a shit load of markers for it, my sister has a shit load of markers for it, and my test is old as balls and doesn't have as much information in it as everyone else's, but still has markers. My uncle had pancreatitis, apparently, although no one felt the need to inform my mother of that until.. last month.

And that means as soon as I get the 100% positive "this is genetic, stop acting like this is my punishment for my non-existent fucking alcohol use" paper in my hands, I'll just put together a binder of medical papers discussing the use of steroids as a treatment, bring it to my general practitioner, and see if I can just try prednisone through informed consent. And maybe it will work! Maybe it will not!

But at least I can say that I've tried it, since the doctors can't give me an answer beyond "take more tylenol".

And I'll keep crossing my fingers that I don't have PYS, because haha jesus christ. I thought doctors were dicks before, but having a discussion on pain management and managing an existing disorder derailed into a semi-lecture on how I NEED TO FOCUS ON HOW TO MAKE SURE I CAN STILL HAVE CHILDREN is a new level of what the actual fuck. Welcome to my 30's, I fucking guess.