Neurology Appointment Summary 1/31/2024 11:30 AM

We went to his neurology appointment on Monday. It was a 2+ hour drive one-way, luckily the appointment was at 4 PM. We were both so anxious about it! This appointment was with the Head of the Neurology Department, so we needed it to be a good one. And it was! I made a list of all the stuff I could think of that he needed to talk to her about, and I think he was able to go over the whole list. 

She approved him to use a stimulant for his adhd and although she didn’t prescribe it, that is a huge HUGE positive that will help so many of his issues. It can help brain fog, concentration, energy, task initiation, executive function, etc.

She suggested that he get his testosterone levels checked and start getting injections for them once it’s confirmed that he has low testosterone levels. This could help energy, anxiety, depression, etc.

She prescribed him a vagal stimulator that should help his anxiety, passing out, dizziness, and a lot of his neurological symptoms. He is supposed to use it ten minutes a day. I think they will mail it to us. 

She says that he needs to deal with his mental health issues, because that will really help a lot as it could be causing a lot of the physical problems. 

He needs to go get blood work and we don’t need an appointment, we just have to go sometime soon to do those tests. She is having him tested for a lot of the things we are worried about. Inflammation, testosterone, Addison’s/adrenal fatigue. 

It was a LONG day, and physically and mentally exhausting. But it was a good day. We made more progress toward his health today than we have in years. The only thing that’s really helped other than that is the Lamictal he was recently prescribed by his mental health doctor.

Posted 1/31/2024

To My Husband 1/29/2024 9 AM

Copied from messenger

I am having a creeping feeling of impending doom and death lately and it’s really starting to take hold and scare me. 

I worry about losing my grandparents, or parents, or you… or about dying and leaving my stories unwritten, my art unfinished.

About not telling you I love you enough times to make sure you Really Know How Much I LOVE You and NEED You. 

I worry how either of us would survive without the other. 

I love you. I love you so much and I can’t imagine my life without you and your amazing voices, your warm hugs, your brilliant storytelling mind, your encouragement and love and honesty.

Posted 1/31/2024

D&D and Real Life: Compliments 1/23/2024 1:15 AM

A few months ago, we did a roleplay session between Vivika and Phyrva. 

I said something that was hard for me to say and took me a while to work up to. 

R got dizzy and we had to end the session early. I’m not sure what else was discussed or if he remembers it. 

I need to repeat it because it is true for me as well as my character. Well, in figuring out what Vivika would say, I realized it’s something that would make me smile too. 

Vivika, speaking to Phyrva: 

I like compliments and flattery. When we’ve been apart for a while, I expect you to compliment me when you next see me. In fact, let’s make it daily. I don’t want it to become routine or boring, so don’t use the same phrasing twice.

Posted 1/31/2024

Dream: POV Vivika 1/22/24 8:15 AM

 Vivika Dream 1/22/24 8:15 AM 

Vivika 

We were doing a heist or something. I needed to go in and distract, I guess. 

I put on a helm/mask before going in the door. There was a man, a couch. He looked like he had been waiting for me, but  he thought I was someone else. He started asking me questions in rapid order and getting more frustrated as I tried to think of answers and didn’t have the chance to respond before he asked another. 

“Ugh, you always do this. What’s wrong with you? I thought you were going to take this seriously this time. Just tell me what what happened to you, so I have some closure. You know what, forget it. I’m done.” 

I panicked, I had to do something. He was turning to leave, and I couldn’t have him leaving the room yet. I reached out and caught his hand. I took off the helm. 

I could tell he was leaving before, that he wasn’t planning to come back, but now his expression changed into something else, a sudden thunderstorm of emotion and anger. Whoever he’d thought I was, he must think I had hurt them. And then his expression changed again. He wasn’t angry. Something about him felt comforting, calming, safe. I moved with him to the couch and we sat next to each other, still looking into his face, seeing a warmth and care I’d never felt before. 

I felt … safe. 

Until I didn’t. 

It all faded away like a cloud of smoke in a rainstorm as the anger and wrath bubbled through the Calm Emotions or similar he’d cast on me vanished, the safety and comfort gone like a sweet smell. It wasn’t just that he was angry, the feeling was danger, and power. 

He hadn’t called anyone else in to help him deal with me, he didn’t feel threatened by me at all. Not a good sign.

Posted 1/31/2024

Sunday 1/21/2024 11 AM

 Sunday 1/21/2024 11 AM

My Vine account is unusable until I get 60% of my reviews done. I did 5 more today, so hopefully I get them done in time. A few of the ones I thought I’d already reviewed are listed as not done, which is frustrating.

Gratitude Prompt: 

What are you grateful for? 

R has been really amazing. He is trying so hard to match my energy and keep up with me and my needs. I got my prescription of Adderall refilled last week and I’ve been waking up before noon all week, which is usually really difficult for me. I’ve been staying off my phone until he gets up for the day. He has a test tomorrow to get his stomach ultrasound, to see if the pain, vomiting++++ is an issue with his gallbladder. 

I found out last night that rheumatoid arthritis has a link with Irritable Bowel Diseases like Colitis or Crohn’s, and that the inflammation in the joints and stomach tend to happen at the same time. So from what I read, it’s very likely that he has duodenum Crohn’s disease, which is where the inflammation only affects the upper part of the gastric system. 

His arthritis has not been treated in years, but he was diagnosed with it a long time ago. Maybe before we married? 

So he needs to see a specialist for his arthritis, as it can cause progressive damage when not treated (I only found this out last night when I was reading about it). 

And the kind that affects both the stomach and joints is an autoimmune disease. 

What really frustrates me is that there are specific medications to treat crohns and ulcerative colitis. And the doctor has only been giving him Omeprazole and Famatodine,  which are both OTC medications. 

If he is having a flare-up of UC or Crohn’s, then he needs a corticosteroid prescribed to see if it will help put the flare into remission. I’m angry that they haven’t tried that yet, that there are multiple medications that could help if it is this issue, and they haven’t done anything to actually relieve any of the issues he’s having. Steroids would be a quick way to test/treat this, although it said it could take a month+ to help, so I guess it makes sense not to try both at the same time. 

Ugh I just want my husband to feel better. 

Point is, he feels like crap and has for a long long time, and he’s still pushing himself to think of things that would make me smile and ease my workload and he fucking loves me. He’s anxious and in pain and I’m giving him a hard time about stuff, not because I’m actually upset with him… I’m just also struggling. 

Posted 1/31/2024

List Of Very Boring Necessary Adult Stuff To Do 1/21/2024

 List Of Very Boring Necessary Adult Stuff To Do 

1/21/2024

Taxes 2023 

Taxes 2024 (or 2022??? Not sure) 

My tonsils (schedule ENT appointment, we have an order from my doc, I NEED an ultrasound of my tonsils. My right tonsil has a lump in it, I have tonsil stones, trouble swallowing, feels like my throat has cotton in it, ear and throat pain. I need my tonsils taken out, asap, but after your gallbladder surgery if you need it removed) 

Dentist appointment. I have had a cavity in my front tooth for at least 4 years now. I saw a Facebook memory where it was visible when I smiled. (We’ve known this since I got my wisdom tooth taken out). To get a dentist appointment, we need a Care Card, which you said we “have” but it has debt on it currently that I thought we had already put money toward, and it turns out you have to call them to get the card actually activated so we can pay it….. but we don’t have any money anymore so there isn’t any way to pay anything on it, which is really beyond frustrating. 

Call and set up Care Credit Account. 

Pay Credit Card (vet) 

Pay credit card (TV and external hard drive and headphones) 

Fill crack above windows in kitchen. Requires 65F+ and ventilation/us leaving for a while with windows open and fans on. 

Service call for water heater. 

Service call (except not with insurance) for leak below sink related to dishwasher. 

Buy tape to fix leaking pipe 

Buy caulk tape to properly seal around bathtub and shower. 

Clean basement leaky pipe mess 

Ship Christmas present to her parents 

Buy Bruce a t-shirt? 

Get wife a state ID from DMV so we can do the paperwork for the house tax documents so we can get money back from the tax exempt thing and stop paying so much in taxes on the house when we don’t have to. They only backpay up to 2 years I think, so we are losing money every month we don’t do it. 

R gallbladder / crohn’s 

R dentist

R rheumatologist

Wife bloodwork in freaking Greenville +++ 

Wife Pap smear/ gyno appointment/breast exam for pain with period, etc

Car - oil change or …? Check up? 

Break down boxes for trash

Mop basement guest bedroom / where Dusty’s cage was. 

Review a whole bunch of stuff on Vine before my account gets banned. 

Diagnose self and spouse and convince doctors to actually help us treat/fix it. 

Figure out what the fuck I’m doing with my Etsy shop, leather business, etc. I don’t want to quit, but… how can we get my product somewhere people will see/purchase it without losing money? 

My writing. First I have to reread the whole thing. It’s taking me AGES to get myself to read it, plus I only have time available to do this when I’m alone. How do I actually LET myself rest, read, etc…? How do I motivate to read instead of play phone games? 

My D&D notes for Vivika 

My D&D notes for VINCI’s session. We were supposed to sit down together and talk through it, and then we never did. I thought he really wanted to, but after the session was … over? He just never seemed to think about it again. 

There’s so much more but this is what’s gone through my mind in the last hour. It’s why for a long time I kept asking for a maintenance. There are so many things I can’t do alone. So many decisions we aren’t making, important and necessary things we aren’t doing. It’s costing us money. It’s messing up our health.

Posted 1/31/2024

Rant Incoming (Copy + Paste from Messenger) 1/20/2024

I need you to do a whole bunch of things, that you have been telling me you will do for a very long time. 

Periodically I have a fucking breakdown and lose my shit on you because shit needs to get done, and then you ask me “what stuff, babe?” And then we schedule a time to talk about it or you listen to me tell you all of the things or I make a list… and then nothing happens. The next day you don’t even remember the argument or the promise that it would be The Next Thing We Do. 

I am so so fucking tired of carrying all this shit around in my head for us. I’m so tired of being the ONLY one to remember the shit that has to get done, so so damn tired of trying to remember to remind you to call X on a weekday before 3PM, only remembering on weekends, and then having to spend a literal hour+ begging you to get out of bed and dressed, and HOPE I remember what I needed you to do. 

I’m tired of being the only motivating force to do the adult shit in our lives. It’s exhausting. I’m fucking TIRED. 

I know this is a horrible time to bring it up. It’s a damn weekend. There’s no one you can call, nothing you can do to fix any of the things Right Now, AND you have a “don’t eat after midnight” order tomorrow night with a Monday appointment.  

Shit’s gonna get dropped. It’s not your fault. It’s just going to be stressful and use all our spoons on Monday.

Posted 1/31/2024

Sick and recent progress 1/9/24

Had a stomach bug. 24 hours of severe diarrhea and stomach pain and cramps. The next day I was really weak and felt like I was in a dreamlike state all day. Super moody and irritable. 

Today hasn’t been much better. I think it’s the second day since I’ve been sick but I’m not sure. 

It kind of wrecked the thing I was doing- I wasn’t using my phone until I went out to walk Honey. And it has been a huge boost to my mood and productivity and just overall sense of accomplishment. It helps me clear my head and figure out and focus on what’s important to me. 

I’ve cleaned off my desk, my bedside shelf, and cleaned out a few of my desk drawers.  

It’s not perfect, I have a bunch of stuff I’ve put on the floor because I don’t know where to put it, but it’s still progress. 

I also sorted through a big tub of leather and cut a bunch of strips into lacing or into mini-whip shapes (still need to braid them). This is a big step toward getting back into making toys. I also cleaned up my workstation downstairs and rolled and stapled several in-progress toys. And glued the caps on them too. So I need to make corsets for about 5 toys and I will have finished some stuff. 

Today I sorted some of my D&D miniatures by how far I’ve gotten into painting them. A few of them need to get sprayed with clear coat, and several need finishing touches. A bunch more aren’t close to being done but have been started and need to be worked on a lot more. So I need to figure those out and work on them. I had shaky hands today still, still weak and wobbly from being sick I guess so I was only able to do some minor stuff that wasn’t small details. 

Posted 1/31/2024

Rowan/Master Roleplay 1/2/24

Rowan Master Roleplay 

There’s something about being put on torture equipment that was made to break people much bigger than myself, or perhaps just made to go so much farther than I can imagine… 

The chains could be feet farther apart than they are, and I feel like my arms are stretched wide enough I couldn’t move more of my own will, and every example I have is similar. I may feel like I’m almost at my limit, but it’s clear that my Master is taking it easy on me, is being careful not to break me, is aware and considerate of my limits. It doesn’t make me feel inadequate to know that he’s not trying to do to me what he must be used to doing to others, it makes me feel cherished and valued, loved. He causes me pain but goes to great lengths to keep me whole, and it’s evident that he cares for me. 

I feel like it’s a lot, but realize for him, it’s gentle, barely above tame. Mild for him is spicy for me, and I love that he is willing to accept me even if I’m … a bit bland.

Posted 1/31/2024

2023 summary

 Last year was hard. Life has been HARD. 

Honey and Penny both got cancer. 

Honey had surgery for MCT, and a ton of people helped out with costs to get her surgery scheduled and paid for. 

Penny had lymphoma, and lived 2 months before her quality of life started to decline. Penny passed away this year. 

Our rabbit Dusty passed away in December 2023. He was over 10 years old. 

Chewy sent flowers and refunded our rabbit purchase that I tried to return (+ a big bag of dog food).

We’ve contacted a local rescue, “2 hearts” to donate Dusty’s cage and hay and pellets and other stuff to. The man running it came out and rescued a hawk the day we found out Honey had cancer. He’s a good man.  

I only have photos from half the year on my phone and don’t remember a lot. We went disc golfing a lot for a few months until it was too hot for both of us, and we stopped being able to complete a course. (June ish?) 

We were in a relationship with Nell from late 2022 - around June 2023.  Life was so hectic but at the same time we weren’t really living much outside of putting out fires with her. Both of our stress levels were 12/10 constantly and her emergencies would bump it up to 15/10.

He was very sick this year. Is still recovering from a few head injuries, still has very high anxiety, triggers at night and at loud sounds. He was also having a lot of seizures, peaking around June. Has panic attacks which trigger flight response, or sometimes make him pass out. He has a stomach issue that is currently being treated, and seems to be recovering, but very slowly. Was throwing up every time he ate, with severe stomach pain and diarrhea. Food tastes bad to him. No appetite. Had a procedure and the doc says his stomach is “tore up” and he is taking Omeprazole and fomatadine, and we have extremely limited how much Aleve he takes (which is causing his arthritis pain to be worse as it is currently untreated). He throws up a lot less now, and mostly only if he forgets to take his stomach meds. 

I started both of us on multiple vitamins at the start of December. Especially Iron for me. My endometriosis/ period pain seems to be getting worse again and I’m having mostly clots with dark blood and 3+ debilitating days a month of cramps and back pain and loss of focus.

The vitamins seem to be helping both of us in terms of fatigue and lethargy. 

We have both been severely depressed this year, dealing with stress from loss of a serious relationship, loss of loved pets, chronic health issues. It’s all been too much. We are both still recovering, although he seems to be struggling more than I am with it, his health issues are taking so long to recover and get under control that of course it’s holding his mental well-being back too. 

I’m thinking about closing my Etsy shop. I think I went the whole year without making a sale. I had a vendor fair. And made a decent amount of money, but it didn’t cover the amount I’ve spent on supplies this year. I still want to vend, craft floggers etc, but I just don’t think Etsy is working anymore/right now/ for me. 

I would need a media manager to make it work, basically. 

I haven’t been making time to make toys lately. I don’t have a dedicated space to work, and my energy is so low that by the time I clear off a space to craft, I’ve lost the energy and motivation to make anything. 

I think I was writing some this year, but I think most of my progress on my Emory novel was in 2022. I want to work on it again. I want to read Terry Pratchett’s DISCWORLD series. I want to reread The Queen’s Thief series. I want to paint a million D&D miniatures. I want to paint canvas paintings and learn more about painting portraits. I want to have a garden with herbs and vegetables, and make our kitchen more accessible and easy to cook in. 

He loves baking, and I want to help him start doing that again. I want to encourage him to draw and paint and be creative, and do things he loves and maybe things he hates too. 

Oh, our neighbor Courtney had a baby in December. A son, Kaden. She didn’t know she was pregnant until late November. She thought she was sick and had been trying to see a gastroenterologist. She has two sons now, her oldest is Caleb (5). 

Honey started a diet last week. She is eating dry dog food, with 1/4 can wet food at night mixed into dry dog food. We give her 3 small treats a day, since we were giving her bites of everything we ate before. So now, a bully stick counts as a treat. 2 pizza crusts or a chicken nugget counts as a treat. Instead of actual treats, she gets kibble as treats in between. The vet wants her to get down to 60 lbs. she is currently 72 lbs. and HUNGRY all the time. She’s been so food motivated since Penny passed away, and has been exercising less, too. 

Posted 1/2/2024