More Inane Muttering

WARNING: Many triggers included, so please don’t keep going if topics related to pain and illness and extreme emotional distress induce stress and anxiety. ❤️✌️❤️

Hi! I guess I’m back….at least for today. We’re camping and it’s raining and the TV isn’t working so my husband is puttering and fixing so I thought, what the hell, I’ll actually attempt to make a complete system while I consume copious amounts of coffee.

Yeah. We camp in a big old camper with two tvs and two sinks and a potty and a shower. And we stay in campgrounds where it costs almost as much as a hotel so we can have full hookups because I can’t outhouse. I just can’t. I can barely deal with my own poop smell, so going into a tiny scary room that’s usually dark and contains five million other people’s poop all in a big pit that’s been cooking in the hot sun with the door closed while being attacked by ginormous horseflies that I know are going to head for my nether regions the first time they get a chance and bite my you know whats and then a crazed lunatic with a chainsaw is going to slice me up from below……yeah. I can’t. I’ll poop in the woods a million times before I’ll use an outhouse.

Also handwashing. It’s imperative that I am able to wash these bad boys at least ten times an hour because yeah. I just need to. Alcohol hand spray might kill germs and stuff, but I’m not scared of germs. Or even really bacteria. I’m scared of stickiness on my hands, and poop particles on my hands.

As you can plainly see, this little break hasn’t done much to cure my OCD. Want to hear what’s been going down, though? Of course you do. So, in June of 2021, I was diagnosed with psoriatic arthritis. Fun, right? They told me it was pretty aggressive, and that the levels of inflammation in my body were kind of a big deal, so I needed to really work on reducing my stress, and finding a biological that could help stop the progression, because it’s already in my spine and fingers and toes. Apparently, PsA attacks connective tissues, too, not just the bony stuff. So you’re kind of screwed either way. I ended up leaving my job because the pain had gotten really bad, and apparently this wasn’t something that was going to get fixed. Which ended up being the best thing ever, because my stress levels were horrible and COVID didn’t make that any better, so I needed a change.

Left my job in August, and started the lovely medication tryouts, which actually weren’t too bad, it’s just that the first three didn’t work. Then, in October, I started having these horrendous face pains. Like, getting stabbed in my face all night long and having my cheek ripped of kind of pain. Not awesome. After doctors and dentists and people probing my face and mouth, I was diagnosed with Trigeminal neuralgia. If you’ve never heard of it, but you’d like to know more (and trust me, you want to know more because I had no idea this kind of crap existed), check this out: https://en.wikipedia.org/wiki/Trigeminal_neuralgia

RIGHT? Yeah. This is a thing. So from October 2021 until September 2022, I did okay. I tried all the meds and ended up on the anti-seizure ones and they controlled it enough that I made it through my day. I sang and taught lessons, and I started a little business making skincare stuff, and everything was going okay. I still had some attacks at night, but I was able to deal. Then in September, the pain started ramping up. I was having attacks during the day, but I was in a musical theatre production and really loving my role, and also getting ready for High Holy Days at the temple where I’ve sung for many years, and I was feeling like I could make it through. And then singing started causing the attacks. And talking. And breathing. And eating. And really everything else on the planet. And then one day, I warmed up to go to my voice lesson, and the attack hit so hard I couldn’t push through. So we headed to the ER instead of my lesson. 

That day, I learned that there are some things that even a hospital can’t help with. Sometimes you are truly all on your own. I’m so thankful I have such a tough husband to go through this kind of stuff with, but I wouldn’t wish this on my worst enemy. We finally got to the back at the ER, they put me on a bed and pumped in some morphine, and basically told me that there was nothing that they could do, and it was just going to continue and/or get worse. Oh, and the attending physician told me that her nerve pain broke up her marriage, as her husband told her that he just couldn’t deal with it any more. Thanks, doc. Super helpful as I’m feeling like my face is being ripped off over and over again without stopping. 

That day, my husband had to call my director and the people at the temple and quit all of my jobs. I couldn’t even make a phone call. I spent the next few weeks on the floor, screaming and either trying to think clearly enough to figure out how to k*ll myself, or asking my husband to k*ll me. It ramped up to the point that there was zero time between attacks. We tried going to a different ER in a bigger city, hoping that they could just knock me out for a few hours so my body could rest, but they were so full that when we got there, they told us that it would be hours until they’d even get me back, and that when they did, they wouldn’t be able to help me because there was no neurologist on staff. So we drove back home, me screaming and rocking back and forth the entire way, and my husband trying to get someone on the phone at the Mayo Clinic who could see me and do something to help, because the meds weren’t working at all, and there are zero neurologists taking new patients where we live. We finally got put on a waiting list there. An estimated six months. Neat, right?

We went home and felt like we were in hell. I couldn’t eat or even go to the bathroom. The nurse at the neurology office where I get the Botox for my migraines was wonderful and called in a buttload of meds so we could basically throw everything at it, but even that didn’t seem to work. My acupuncturist came to my house and treated me while my body seized up and I screamed. I went to a neighboring town and got musculoskeletal adjustments, which, combined with the meds, calmed the attack after two weeks. I then had several folks recommend Barrow Brain and Spine in Phoenix, and I called and got on their waiting list. Now that my pain was down to a dull roar, I was able to have a buttload of brain scans.

That’s the proper medical term, btw. A buttload.

The scans showed that I had a big old artery compressing my trigeminal nerve, which meant I was eligible for brain surgery to relieve the compression, and possibly stop the pain. The amazing neurosurgeon at Barrow got the scan and bumped me up for surgery to take place in January 2023. 

So, that’s the first part of what my life’s been like on this little break. I should say, our lives, because at this point my husband and I have gone through something together that changed everything for us. I mean, it was always us before, but this fused us together in a new way and I am so proud that he was able to take it. I thought we’d had tough things before but nothing could’ve prepared us for this. Ugh.

Life, am I right? No worries, there’s more of the soap opera….just not now. Too much for today hahaha….I need a snack.