Sunday, July 31, 2022
Migraine Blindness
Sunday, June 26, 2022
A glance at my adult relationship with food.
Thursday, April 21, 2022
It was Faceblindness
ADHD + Disordered sleep frustration.
Friday, March 25, 2022
My Meandering Exploration of South Korean Culture
Thursday, October 28, 2021
Crying Is A Journey
Monday, March 15, 2021
Fasting for Bloodwork
So Faythe and I have quarterly bloodwork to make sure that our thyroid medication is working properly among other reasons. Usually our sleep patterns sync up with each other about 80% of the time, especially since we both have been living here with Mom and even more so with us homebound because of the pandemic.
What that means this early Monday morning is that instead of fasting about 12 hours pre-bloodwork, both of us have already been fasting at least 14 hours by 2am because we both crashed from fatigue about midday. Normally this would only be a little inconvenient but since we are also only about (little less than) a week post 2nd covid vaccine shot we have gotten past the most severe symptoms and are left with a bit of fatigue and lethargy.
So since time math is annoying we can say with reasonable expectation that by our 8am doctor appointments, we will both have been fasting about 20 hours at that point. Sometimes we end up fasting even longer on accident (sleeping through most of day prior to appointment to try and gather strength as an example) but when we time it right we stop eating 8pm the night before which means we can have a snack as late as like 7 to account make sure our blood sugar at realistic "low" numbers.
In addition to this complication, when Snowpacolypse 2021 killed our power for 2(3?) days it ruined several of my medicines and I missed two of my testosterone shots and was also off my thyroid meds for at least half a week due to a weird postal service delay.
I fully expect my numbers (across the board) to be completely out of whack when we receive the results of today's bloodwork, and I also woke very hungry around 10pm Sunday (IIRC) and it was too late to eat so I'm kinda grumpy/hangry and trying to distract myself until I can eat post (monthly) doctor appointment and pharmacy trip.
On a positive note, I did remember to shave by my elbows. My arm hair is thick and tends to make it hard for the tech to see my veins well. Also it hurts like hell when I have to rip the bandaid (and chunks of hair) off later. Bonus pain since I seem to have mild allergy to medical adhesives, which manifests as a rash and my skin just permanently attaching to the bandage which is obviously unpleasant.
So I guess my first post in forever is just to whine. Sorry.
TLDR: fasting for bloodwork kind of sucks, we all completed our covid vaccines, and I'm trying to distract myself until my dr appt so I don't sit and think about how hungry I am.
Sunday, November 22, 2020
The perils of the passionate mind
This morning I stumbled into wakefulness with a burning passion to write a Thesis on examining theologies past and present through a modern Christian lens and found myself arguing (with myself) whether I wanted to write a persuasive argument or a comparative piece and now I'm very awake without a proper answer and feeling annoyed that I am not sleeping peacefully.
What dragged me firmly into consciousness was wondering if I emailed my friend and previous English professor about it, whether he would find or interesting or have thoughts or insight to share.
I guess my brain hasn't given up on my drive to study theology in the greatest detail until my final breath despite my body becoming increasingly broken and uncooperative in the last several years. Thanks brain, I guess.
This is not what I expected my first post in two years to be. At least 2020 is drawing to an end.
Tuesday, March 6, 2018
Wake up and Hate food.
So I get up, perch on the edge of the bed, grumble a bit to myself, and ask my mother who is passing the door of my room, on her way to the kitchen if she wants to hear something funny. She says maybe. I tell her what I misread, with the context of what it actually said "Wake up and eat food" and she is amused*.
*Side note my past and present tense get all jumbled, my apologies to the reader.
I continued with some word play, as I followed her into the kitchen, based on the song "Personal Jesus by Depeche Mode", but I can't recall the specifics even a half hour later (6:36am). I believe I sang "Wake up and hate food" to the tune when I began, and Mom recognized the tune but not specifically the song or artist. I believe I made a reference to "Reach out and touch faith" which I often change to "Reach out and touch Faythe" which further cemented the connection, although Mom didn't seem to recall the song in detail. I recited the artist and title like an AI on a device, border-line robotic with carefully crafted vocal tone. I announced the say was an especially literal day.
I experience time in an unusual way. I don't experience it properly linearly. I suspect this is why my verb tenses always give me trouble in writing. For me, time is more like a great expanse, all of space, the universe, in every direction, ebbing and flowing in ways the human mind cannot process.
I have tried to explain this before to friends and family, sometimes in passing, and sometimes in great depth hoping to strike a chord, and understanding of how I experience things, and why time-related memory is such a tricky thing.
Alarms set on my phone, to try to function in the "linear time" world.
* 5:30am, "Morning Meds" (which must be taken a half hour prior to food)
* 6:00am, "Wake up and eat food"
* 9:00am, "Eat a small snack"
* 1:00pm, "Drink nutritional shake"
* 8:00pm, "Evening Meds"
Sometimes there are additional alarms set for temporary medications, or times are altered to account for temporary situations, like if Faythe is staying over, and wants to be awake at 8am so that we can do something during shared awake time. That time is optimal for our current sleep cycles and maximum functionality in a 2-3 hour window. Once she is awake and has done her morning routines and I've done mine (interrupted today to write this, which felt important) we have about 3 hours before my medication doesn't help me enough to function, communicate, operate at a basic level with other humans.
**Health. I'm fairly certain I haven't given great detail in any way as to what I've been experiencing, changes in diagnosis, changes in treatment, here or anywhere in quite a long time. I apologize for that. Because of the way I experience time, as noted briefly above, I don't really process how much has passed within a day, let alone as days run into weeks, months, etc.
I have quite a list of diagnosed conditions. I think it might be easier as bullet points. Easier to follow and process than my stream of thought style of writing at least.
* Asthma
* Hypothyroidism
* Bi-polar Disorder (Rapid Cycling)
* Chronic Migraine (with aura, literally never-ending)
* Obsessive Compulsive Disorder (OCD, mild)
* Social Anxiety Disorder
* Generialized Anxiety Disorder
* Postular Orthostatic Tachychardia Syndrome (POTS)
* Ehlors Danlos Syndrome (EDS, hypermobility type)
* Fybromyalgia (recent diagnosis, within last 2 weeks)
* Sleep Apnea (no sleep study done, diagnosed in hospital)
* ADHD (surprise adult diagnosis)
* Transgendered (female to male, legally transitioned)
* Diverticulosis (medically restricted diet)
I keep an updated list of diagnosed medical conditions and current medications on my phone in the ICE (In Case of Emergency) entry of my contact list, under notes, as well as full memos as backup incase EMTs don't check my contacts. At some point soon, preferably before I turn 35 this summer, I'd like to get a medical alert bracelet that is inscribed telling medical personal to check my phone before adminstering medication. I should also make sure I have an updated list of medications that I have had adverse reactions to.
What this all boils down to is that due to brain fog from the chronic migraine, or pain fog, or both, I require quite a list of medications to function at a very basic level. Trying to function day to day is often painful grueling work, done with whatever smile I can grasp. It's taken many years of constant breaking-point debilitating pain to have that pain taken seriously, which is sadly not at all unusual.
My doctor was appropriately skeptical when I came into his clinic initially, but as time has passed (not sure how much time, between 1-2 years) and he has been able to see me at my functional best, and also at my cognitive worst, he believes me. At out last appointment I couldn't string sentences together properly. The words were out of order, if I could grasp at words, and most communication was body language, fixating on the words I could manage, arguing to myself that those were not the words, and expressing explicit desperation. Our temporary fix was to tweak my stimulant to a slightly higher dose, and double the dose of my "as needed" migraine medication.
For the moment, that combination of changes has given me some functionality. The first few days I had higher anxiety in the morning, adjusting to the new levels of the stimulant, and the first couple of times I treated migraine, I had unholy migraine hangover like I haven't experienced in a long while. However, for a brief 5 hour period, my pain went from a solid and unquestionable 8 on the pain scale of 1-10, to a 3. For FIVE SOLID HOURS. It took another 12 hours or so for the pain to ebb back up to that solid 8.
I try really hard not to discuss my pain, or my suffering because I don't want to burden my friends or family, and I often feel trapped within that pain. I want to discuss other things or do other things if I am functional enough to communicate.
That said, while I am able to function to this degree, documenting it is important. I don't know how long this combination will work to allow me to function, and I don't know what we are meant to try next as I'm fairly certain my doctor is grasping at straws trying to find anything we haven't already tried to help me.
I can't or won't promise to post more regularly, because each time I do so, I end up bedridden for months afterwards, and I refuse to make a promise I know I am unable to keep. What I will do, is promise to try to check in more. That's all I can promise.
Thursday, January 4, 2018
Cotton Candy Sky
In this moment the sky is shades of vivid teal, starburst strawberry pink, and vivid candy lemon yellow where the sky and clouds touch. It is gorgeous, and I've never been able to capture it on film or digital camera because the sky only looks like this for a very brief moment, and by the time I grab camera, or phone, the moment is over.
I've never seen this particular phenomenon anywhere but Texas (specifically DFW sky, which differs greatly from South, Central, and East Texas skies). It doesn't even look like this in Oklahoma with the same specific criteria.
What I've noticed about this effect is that it must be an unusually cold (for Texas) morning, with clouds that look like snow, but spartan. Specifically I think they are sirius stratus clouds spread incredibly thin across the sky.
Something that I think contributes to the uniqueness of this moment, is how vastly HUGE the Texas sky seems compared to anywhere else I've lived. Our trees are short, our hills and valleys pretty subtle at this part of Texas which is part of the Great Plains, or Great Plateau, depending on where in DFW you live.
I saw beautiful, so far un-captured, moment the most as a teen attending early morning seminary before school. Mormon kids in states other than Utah generally attend before school, getting up 4-5am, depending on their family routine and when school starts, and class is usually an hour. During the darkest days of the year we often got out and headed to school just as the sun was rising, and as a passenger I was able to pay this otherworldly beauty more attention than my parents or older siblings who were driving. I also was far more likely to have been up all night, and much more awake at that moment than anyone else, since my circadian rhythm has always been off.
I will attempt, because the weather is right, to try and capture this on my phone's camera hopefully at least once over the next few mornings, because when I mention it, no one seems to believe me. I am given a "sure whatever you say Rory" kind of look, and a sympathetic smile, because I'm a dreamer, and an artist, and I see what others do not see.
To be clear, I've watched sunrises in Illinois during similar weather where the criteria would be met, in Virginia Beach, Virginia, and in various places throughout the US on road trips when I'm loading up the car. I've seen lots of beautiful sunrises, but never THIS sky.
About Me
- Rory
- I'm Rory or Rorek in most places. I design, sew, and craft, primarily for my Asian Ball-Jointed Dolls. I also dabble in interior design, but I'm a little out of practice.
I post about the things I enjoy, which are sewing, photographing my dolls, designing new outfits, knitting, which I started in September of 2008, thanks to my Mom, and occasionally drawing, or painting.
I also post about Life Events and how they affect me and those that I love.
Currently I am living in DFW, Texas in the USA and working towards a degree in Theology.