Daily Archives: April 27, 2016

I’m not sure how much I’ve talked about this on here, but here goes. I have trouble regulating my body temperature. I don’t sweat enough to cool down. I don’t exactly know why. It’s probably due to one connective tissue issue or another.  Not sweating can be dangerous, especially when exercising,12 so when I saw the family practice doctor today, I told her. She said I should talk to my rheumatologist or his nurse. I called the rheumatologist’s office & the nurse told me that she’d never heard of anhidrosis/hypohidrosis34 and that I should call: (a.) my endocrinologist,56 (b.) family doctor,7 or (c.) go to a walk-in clinic.8  I asked was she sure that Sjögren’s/UCTD couldn’t possibly cause a person to not sweat. She assured me that lack of sweat has absolutely nothing to do with either condition.9 And I’m sorry, but who goes to a walk-in clinic for an issue that even a speciality clinic is saying they’re unfamiliar with? Why would you even recommend that?10 If you’re going to recommend calling a doctor, why not recommend a dermatologist or a neurologist. I no longer have either of those, but at least skin and the nervous system have something to do with a lack of perspiration.  I called the family practice clinic back and asked them to leave a message for my doctor. They said she’d call back. She didn’t. I guess maybe it’s been queued for sometime later, but I am not going to hold my breath on it.  I am frustrated that some offices don’t take real problems seriously.11 And I am even more frustrated that I cannot change to doctors/offices who/that do care because of insurance.12 Photo credit: Kullez via VisualHunt.com / CC BY On the 18th, when it was 80°F outside, I went for a 45 minute walk & a 18 minute walk. I came back when the left side of my head felt like it was being destroyed by some very angry person with a hammer. I was nauseated, had some gross intestinal issues, my muscles were cramping, my skin was bright red, and I had one or two drops of sweat on my face. The rest of me was dry. It took 3 days to recover. ↩I tried a short walk this week in cooler weather with similar outcomes, but recovered in hours. ↩the actual terms for the issue ↩I used lay terms while describing the issue. ↩I don’t have an endocrinologist. ↩Sweat glands are part of the exocrine system anyway, not the endocrine system. ↩The one that said to call her. ↩Yeah, really. ↩That’s why NIH has 14 pages of journal articles on Sjögren’s and anhidrosis. Because there is absolutely no link at all. Ever. And why it’s actually something that has been known to impact patients with Sjögren’s, Ehlers-Danlos, UCTD, MCTD, Fibromyalgia, Dysautonomia, etc., which are all treated by…rheumatologists! ↩And when it’s a condition that can be fatal? No, you don’t ship someone to a doc-in-the-box when you can’t be assed to understand potential symptoms of diseases you treat every day. ↩And, in case someone wants to launch into some rant about how they think I’m making this up, go talk to a wall. It will give you all the attention you deserve. ↩The American medical system is super fucked up. ↩

Can’t Sweat Any of the Stuff

I opened a FetLife account one night almost two years ago. I won’t link to it here or explain why I joined. I will say I quit using it not long after because of behavior, unrelated to kinks, by some users that I found alarming. Before tonight, I had only signed in to stop receiving regular emails from groups I had at one time thought might interest me. Since that time, I had not signed in, nor had I thought about signing in.1 Tonight, though, tonight I signed in and deactivated my account there.2 On my FetLife account, I do not recall ever linking to this or any other blog I have ever used. I was warned about maintaining anonymity by a user that I once knew from church.  34 I didn’t use images where I could be easily identified. I didn’t use any identifying nicknames. I used my first name once, but no more than that. I’ve also never linked to my FetLife account on any social media or on here.  I’m stating this because I felt, I don’t even know how to describe it, when I got a notification of a private message. The subject line was “Hello Janet” and the body of the message was:  Hi. You have a very interesting net presence. Your blog shows that you think deeply about a lot of things. Let me know if you’d like to chat some time and see if we can have a conversation that interests you.  I’m guessing that whoever wrote this is probably reading this right now. That creeps me out. It has taken me a long time to feel truly comfortable talking about my life here or anywhere. And now it feels like that comfort, that ability to express myself freely has been taken from me. I don’t appreciate that. I shouldn’t have to feel uncomfortable talking about myself on here. I shouldn’t have to worry about how a total stranger managed to track my blog down from the one time I slipped up and used my first name. I shouldn’t have to worry about what all that stranger might have been trying to find out about me.  I guess I do have way to describe how I feel.  I’m scared.  I’m disgusted.  I’m absolutely fucking pissed off.  I understand that we as a society Google everyone and everything. I understand that privacy is something that barely exists in today’s world. But I also understand that this was something that should not have happened. This was too much for me. I tried so hard to maintain anonymity because I felt that would keep me safe. This ripped away any safety I might have felt on there, on here.  I’m out of FetLife. For now. Possibly for good.  Photo credit: breathtakingly via VisualHunt / CC BY-NC-ND I hadn’t wanted to sign in. I like who I’m currently involved with and feel happier with them than I ever thought possible. I don’t talk about this person or what we do on here because I want to maintain his privacy. ↩I had to reset the password to do so. ↩Who knew Mormons could be kinky? ↩He is part of why I quit the site. I found him on a dating app, but didn’t know who he was—he didn’t include a picture—but I thought his profile sounded interesting. He knew the whole time who I was. When he finally told me, I pulled away. I didn’t particularly like him before the encounter. I liked him less after, especially considering I met him while I was doing my prospective member lessons before I was baptized. That lesson was done at the apartment he shared with his then-wife and his son. We had a history that I didn’t want to relive.  After I made it clear that I didn’t have an interest in engaging in anything with him, he started popping up on other websites I used saying how surprised he was to run into me on them. He accused me, in jest, of stalking him. ↩