Still More Inanity

 I used the word inanity, which means that I am super smart and fancy. Hahahahahahaha nope.

Okay, so I figure people must be on the edge of their seats to find out what happened next in my terribly thrilling saga, right? Or maybe I just want to get it out on paper before I forget it all and move on with my life. Maybe that’s it. Yeah. 

So, where I left off, I’m scheduled for surgery. BUT. I still have to wait. And those three or so months were just super poopy. I had to be so careful not to do any of the trigger things, I was still in constant mild pain, so it was exhausting, and I was on megatons of medications to keep the nerve as calm as possible. And I couldn’t sing except little bits and pieces when I was teaching and I forgot that the singing would give me a lovely jolt. Not fun. 

I’m sure we all have this passion in life for something, right? Whether it’s cake or painting or race cars or whatever, there’s something in life that just feeds our hearts and keeps them full. No singing, to me, felt like life became black and white all of a sudden, and I lost all of the hope I ever had. But the pain became manageable, so I had to take it. This wasn’t the kind of pain one could choose to live with, so it was just necessary. But it was gross. 

Then, I also did a lot of googling about the procedure and brain surgeries, in general. I shouldn’t do that. Worrying is my superpower and the videos and blogs and everything scared the crap out of me. By the time we made it through the waiting and were in our lovely little Airbnb getting ready to go in and get my brain cut open, my husband and I were both scared sh*tl*ss. Tacky, but it’s the only word that even comes close. It was terrifying. So terrifying that we couldn’t even talk about it with each other, because that would make it too real, so we just said super positive crap and kind of tried to say goodbye to each other when I went in for surgery without saying goodbye forever. Which we were scared about.

It was a looooooooong one. Hours. I don’t know how my husband did it, but he is made of much tougher stuff than I am. I would’ve bawled in the car the whole time, but he looked like he had his business together when I opened my eyes and saw him. Well, to be honest, saw both of him. Because I had some sweet double vision going on when I opened my eyes, and that was not awesome. Took a bit, but it cleared up.

Another fun thing? When we met with the surgeon, he was so confident. He basically said I was so young and so healthy that really it was most likely to take and be good for at least 5-10 years with no pain, right? And that most people woke up feeling no pain at all, right?

Hahahahahahaha just no. Not me. I woke up and had a little baby attack within the first hour. And had pain for, say, the first two months. Yep. For two whole months after the surgery, I didn’t know if it had really worked. Nice.

However, month three was much better. This recovery has been tough, though. Lots of pain, lots of exhaustion, lots of brain fog and forgetfulness, and a whole buttload (technical term again) of new neuroses. Because, well, you try living with that big old sword of Damocles hanging over your head. Unfortunately, this is a permanent condition right now. There’s no lifelong cure. It will most likely come back and most likely it will be just as bad or even worse, which is hard to even imagine.

HOWEVER. As the woman with the undamaged toys from my childhood in a box in my closet, and a ton of unworn clothes in there, too, I am learning to live in the present and not the past or future, and this is a real thing. It is difficult in a way I would never have imagined. We are having to be happy with the pain free days we have now because there is never a guarantee.

Living with that is very tough for my husband and I, but it’s also beautiful. We’re spending a little money here and there instead of just saving for some unforeseen future all the time. We’re taking better care of our health, because we’ve learned that these bodies are all we get and they are the most important asset we will ever have. We’re reaching out to friends and family more, because our time with them is precious and much more important than working, cleaning, fixing, and saving. The work will always be there. Being careful is great, but taking it to extremes just leads to fear and anxiety, and we have plenty of those things in our lives. For reals. And we are more thankful than we’ve ever been to have been given this time together. 

We didn’t know what would happen when that dude went all up into my brain. So many things can happen during a surgery, and it could’ve even failed altogether, which would’ve been bad, too. Not only did I make it through, but I had a wonderful surgeon who did an amazing job and fixed the vein and artery compressing my trigeminal nerve (yes, I am an overachiever and I had a vein getting all cozy with my nerve, too, which they couldn’t see on the scans), and I stayed in the most amazing facility with nurses who were so wonderful to me, it makes me cry just to think about it. I just can’t even deal with how good everyone was to me. And then I got to go recover in a beautiful little house with my husband, who took the best care of me you could imagine, and we got to go on little baby walks in a safe neighborhood, and nothing at all bad happened.

So, really, it was just miraculous and fantastic and the best possible outcome. And we’re both better people than we were a year ago. We are softer and kinder and more understanding. We are way less judgmental and more willing to try new things that might be a little difficult or uncomfortable. I got an kickass new arm tattoo of a bear surrounded by our wedding flowers that I can look at all day to remind myself that we are just so strong together. Oh, and most of all, we are so much nicer to each other every single day.

Which is probably the best side effect of all time.

Now? Well, I’m about four months out, and while there are still a few small issues, like a completely numb head and some delightful eye twitches, the trigeminal neuralgia attacks have 100% stopped. I can sing again, and my voice seems to have come back stronger and easier than ever before, which is awesome. We’re working through the fear and anxiety, so those are getting better too. We are actually starting to make plans and live again, which is super fun, and we’re learning to be in the present more and stop existing in the past and future all of the time. 

Well, we’re working on that and doing much better.

So that’s my story. Neat, right? Geez, we are dramatic over here 😬 Happy Saturday, folks!

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.