Capitán Cóz

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[thegoodtailor]

~ Ode to Green Mush ~

(Health Update 11/15/20)

I get quite a few questions about why I’m unable to eat like a normal human, or why I start my day at 2:00am. Because I’ve a lot of joint and nerve pain in my hands/fingers, typing at length is difficult… but today’s a “good day” so I thought I might give ya’ll a glimpse into my daily routine. Welcome to the third circle of hell for a former “foodie”.

Since I’ve been loosing stomach function, I have to structure my whole day around eating/drinking/digesting. Trying to keep my body going when each meal is limited to an 8oz/250ml measuring cup is fraught. Everything has to be nutrient dense. No fucking cucumber, you know? I’ve a thousand little rules, but here’s the major ones: 1) Each meal must be 8oz/250ml + small dry snack (like a granola bar or cookie). A bite over this, or a sip of too much water and it feels like ripping stomach muscle all day. 2) Tiny sips of liquids. No drinking 1 hour before and after a meal. Too much water overly expands my stomach and prevents digestion + emptying (think gastroparesis). Everything that goes into my stomach must be closely monitored. 3) I cannot sit or lie down for 4 hours after eating. The smooth muscle function (the automatic ones) in my stomach must be stimulated by skeletal muscle to digest food. Endless pacing. Hello back pain. 4) Do not bend down if there’s food in the stomach. Holy shit, it’s like origami folding internal organs. Unless it’s completely empty, I can’t even touch my abdomen without pain. I use mobility tools to pick up items. 5) Don’t beat myself up if I’ve had a bad day. By nighttime, I’m so nauseous and sick it’s really intolerable. There’s no point in the day where I don’t feel like my abdomen is enacting the chest buster scene from Alien. I make mistakes all the time, and it can take days to recover. Keep going.

-DAILY ROUTINE- 2:00am - Wake-Up, take care of Brawn and make Breakfast. 3:00am - Finish Breakfast 3:10am to 6:00am - Chores, prepare Mom’s breakfast. 6:10am - Walk Brawn 6:50am - Take Shower 7:15am - Rest, listen to audiobook 8:15am - Prepare Lunch 9:00am - Finish Eating 9:15 to 1:00pm - Chores, prepare Mom’s Lunch, do something creative if fingers are ok. 1:00pm - Rest, listen to audiobook 1:40pm - Prepare Dinner 2:30pm - Finish Eating 2:40pm to 5:00pm - Chores, prepare Mom’s Dinner. 5:00pm - Watch TV/Movie 5:00pm - 16oz of 2% Milk (sipped slowly) 6:00pm - Shower 7:15pm - Bedtime. I don’t sleep much, but I try and rest as much as possible. 12:00am - Hyrdrate like a sea monster while my stomach’s empty. 2:00am - Wake-up, repeat. BREAKFAST: 1/2 steamed apple. 1 muesli square. Approximately 390g. About the size of a deck of cards. My breakfast muesli squares are mostly rolled oats, but also include a mix of buckwheat, sorghum flakes, goji berries (high in vitamin A), dates, cocoa powder and flax meal. I cook it with soy milk until all water is evaporated and then press it into a dish to store. In the morning, I put a square in a pan with a little butter and brown it. Compact and nutrient dense. LUNCH: 1 cup (8oz) puree of chicken, broccoli, spinach, dried fruit, goat cheese, hemp seeds (high in magnesium), stock. A crunchy granola bar or digestive biscuit. Add-ins: Fresh herbs, Promix vegan protein powder, tiny bit of pesto, nutritional yeast, etc. DINNER: 1 cup (8oz) puree of tilapia, avocado, kale, dried fruit, unsweetened soy milk. 1 fig bar. 1/2 crunchy granola bar. MILK: I’ve slowly worked up from only being able to stomach a few seeps to a full 16oz. I can’t tolerate anything richer than 2%, but being able to have a 4th “meal” has been a life saver. It takes me an hour of slow sipping, but adding almost 280 calories and 20g of protein is the reason I’m stable again at 94lbs (42 kg). Blessings be to the cows. MENTAL HEALTH: Cue Edvard Munch... but that aside, thank you to everyone who's been supporting me through this. My pirate pals made my birthday in October absolutely wonderful. My ko-fi b-day money allowed me to buy all the cold weather gear I needed. Keeping warm in the winter with a broken AC has been a lot harder than I'd expected. So that’s the routine. Between Covid-19 running like wildfire and Medicaid not covering referrals outside the city, I’m royally stuck. I’m just trying my best to hold back the despair and keep my body from falling apart.✌️ I’ve also become a connoisseur of crunchy granola bars, in case ya’ll want to know what's what.

[thegoodtailor]

(July 17th) I’ve been thinking about dyslexia and mental imagery. The way I can memorize a photo of someone, but not recall a face that I see every day. When I dream, all faces blur into indistinct impressions. I’ll catch an eye, a mouth… and then it’s gone. I can’t hold numbers or letters in my mind, just the vague shapes of them. When I read, I spiral around the page and extract the words I need for comprehension. I don’t drift from word to word, left to right. I write like a painter. I’ll add something here and there and hope the sentence pulls itself together by the final edit.

Aside from preschool, some middle school level learning and a year of high school, I’ve totally missed out on my education. There are expansive gaps in what I know, and the more I “rebuild”, the more I look around and realize I’ve been at sea with nothing but a rubber duck and a weirdly specific knowledge of endocrinology. 

So every morning I wake up at 2:20am. I get all the chores done by 10am. There isn’t an hour in the day where I’m free from illness/pain/sleep deprivation, but having something positive I can focus my mind on and accomplish… that’s a lifeline. And even if I still feel like I’m sleep walking through nightmares, I also feel much more human. More steady. Not quite myself, but far more healthy in mind and body than where I was. One foot in front of the other.

(Sketch by me. Depicting Angelo, Isabella and Vincentio from Shakespeare’s Measure for Measure) 

[thegoodtailor]

Since I’ve been mostly offline since mid-May, I’ve been wanting to give a Summer 2020 update on how I’ve been coping. The biggest change is education, I’ve absolutely thrown myself into it.📚

Getting the “heavy” out of the way first. My GP continues to petition my insurance, but Medicaid and COVID-19 have been a double punch and I’m still not getting referrals through. I’ve been housebound since June 2019… I can barely remember a time when I wasn’t struggling to make it through the day. There’s just nothing I can say.   

I should probably add that there’s also been a 60% increase in COVID-19 cases in my county in the last two weeks, so it’s just a terrible time to try and get treatment. 

After a year of this, I’m finding it extremely difficult to talk about my health. It’s just been too much, for too long, you know? It’s 24/7 for me. I try and bury the panic as much as possible, but it’s always waiting at the edges of my mind. I have to willfully stop thinking about the pain, or any of the symptoms, or I feel like I’m going to loose it.

For obvious reasons, my mental health has really suffered this last year. I’ve a cousin who recently took her life while in quarantine and it’s made me hyper aware of the cliff’s edge. The last 16 years have been a stupidly long sequence of traumatic events. I haven’t had a chance to be a normal teenager or young adult. It’s been one blow after another after another after another. I’ve no idea what it’s like to feel safe or live outside of a toxic environment. Like anyone who’s experienced stuff like this, there are triggers that are left behind. Like emotional landmines. In the past, I could handle them and find ways to navigate them. Now… it’s like everything is setting me off. A smell, a taste, a sound, an image. It’s like I’m made out of sugar glass.

This is the major reason why I’ve not been around since mid-May. I can not handle the amount of suffering I’m seeing, because I’ve had no escape from my own. It breaks me. There’ll be a time when I can stand up and take action, but right now, I need to heal.

Putting all that aside, I’m going to share the positive things I’ve been doing to help me cope:

Because pain/stress makes it hard for me to sleep, I tend to begin my day at 3am. I’ve a strict hour-to-hour routine to keep pain levels stable and manage the gastroparesis-like symptoms. My meals are pureed mush (protein/veg/whole grain) and simple carbs (fruit, crackers, cookies, etc). My stomach can only handle a limited volume every 5 hours, so everything must be carefully measured. I’ve developed my own DIY physiotherapy. 30min every day. My weight is stable at 94lbs. 

Being able to manage symptoms has also meant I’m better able to care of my mom. It was terrifying to be critically ill, unable to care for myself, and thus unable to help her. Without a support system, everything is like dominos. I couldn’t even go to the ER because I was afraid of leaving her on her own. 

It took months of effort, but finally getting strong enough to take Brawn (my dog) for short walks has been an absolute blessing. He’s looking so much more healthy and happy. A proper bouncy pup again. I swear, I was beating myself up for year because I couldn’t care for him. It just ate me up.

Which finally brings me to the main point of this post… 

I’m doin’ SUMMER SCHOOL.🥳 Well, my own variation of it. It’s a long, complicated history, and one that I’ll fully tell at a later date, but I missed out on my 1-4 grade education and jumped into 5th grade with only what I’d picked up from Montessori pre-school. I then did 5-7th grade and subsequently dropped out of High School during my first year (visual deterioration amongst other factors). I’m not unintelligent, but I’m ridiculously uneducated. Do I know what an adverb is? Do I know my times tables? No, but Shakespeare comes as second nature to me and I can play a fair game of chess. 

When I was in school, there wasn’t much awareness of issues like dyslexia or autism. Just learning to read was a Herculean journey. I couldn’t hold letters or numbers in my mind… or even my mother’s face. So many small details adding up. I missed out on so much because I couldn’t understand what was being taught to me. When I got home, I felt like I had to translate everything back into a language I could understand. It was exhausting and frustrating. 

So here I am. Very sick and sleep deprived, but absolutely determined to learn. I desperately needed distraction, something I could throw myself into, and I finally found it. I’m now surrounded by middle school workbooks and watching short lectures on Khan Academy and YouTube. I’m getting an education in my own fashion. 💪

“My dearest coz, I pray you school yourself.”

— Macbeth (Act IV, Scene III), William Shakespeare. 

~ Cóz 

[thegoodtailor]

Unfortunately, I’m still waiting for further diagnostic testing. The limitations of medicaid’s insurance coverage, doctors/specialists/clinics not accepting medicaid, having no income, etc… it’s all kinds of infuriating. 

Basic diagnostic work should never have taken this long. I’m in a far worse state because of it.

I did manage to get a pelvic/abdominal CT scan approved by insurance and preformed last Thursday. I really need a muscle motility study, but after months of waiting, nothing came through. I’ve a “small bowel follow-through” scheduled for early April.

Daily Symptoms: Severe stomach pain, difficulty moving, difficulty breathing, pain when moving, muscle weakness/limited movement, pain in my esophagus, convulsive swallowing, inability to digest food, gastroparesis-like symptoms (currently taking a pro-kinetic to force the stomach muscles to function), etc. I mean, the list goes on and on… and that’s not even including all my vision problems.

Since my stomach doesn’t empty correctly, I can only eat 1 cup of food every 6 hours. No snacking. Between meals, juice is the most complicated beverage I can handle. Hard to digest foods like meat are off the menu, as is dairy. I try and cram as many calories as I can tolerate into that 1 cup. As you can imagine, eating is incredibly complicated, painful and stress inducing. I use Cronometer to help balance my diet and seek out the most nutrient dense foods, but I still make mistakes all the time. I don’t sleep much at night, and there are times where I’ve woken up with my own gastric juices filling my mouth and spitting out blood from my bleeding gums.

I’m better than where I was in Dec/Jan, thankfully. I’m eating real food, I’m stable at 90lbs. My hair is still falling out, but I’m far from that 86lbs skeleton who couldn’t even handle broth. The symptoms haven’t improved, but I am much stronger. I try and stand and shuffle around as much as possible. I want to keep those muscles functioning.

Obviously, cornovirus is complicating an already complicated situation. Illness, disability, and no transportation means I rely on costly delivery services. Many of which are experiencing shortages. I can’t get soap or toilet paper for love nor money. I also can’t use food stamps online, so… yeah, it’s all levels of stressful.

I just want to be on the other side of this.✌️

[thegoodtailor]

My deepest wish right now is for a proper Christmas. The sort of holiday you fantasize about as a kid. After a certain point, my family and never really did holidays or birthdays. Within the last 20 years there’s only been one Christmas tree (they’re expensive, never mind the gifts beneath).

Being housebound since the start of June (waiting for Medicaid to approve a specialist referral) has been a minefield of stress. I’ve been very, very ill and strapped into a series of medications and a restricted diet that does not allow the consumption of festive treats and alcoholic beverages. You can imagine how much fun my birthday and Thanksgiving were. I am real tired of pureed mush.

Currently I’m hovering around 99lbs (7 stone), so I guess I’m doing better from where I was in November… but it still feels increasingly hopeless/scary to not have any improvements.

Anyway, whinging about something I obsessively stress out over 24/7 isn’t healthy. I want to hang out online again and chat with my pirate pals, but I can’t juggle caring for my mom, my dog, myself and being online. Watching your body and immune system deteriorate while in constant pain/nauseous makes you want to hide yourself away.

Right, back to being festive…  so this summer, when I realized my health wasn’t improving, I emptied out my closet and set it up as a little burrow. When it all becomes too much to deal with, I can go inside and lock the door. That sounds sort of sad, but it’s actually been a life saver. Small enclosed spaces reduce stimulation and allow me to manage pain + relax. I’ve a lamp on a dimmer, so when my vision allows for it, I can watch some TV or part of a movie on my laptop.

I didn't watch many children’s movies as a kid, but now I just feel like wrapping myself up in my blankets and enjoying My Neighbor Totoro and The Moomins. If anyone has suggestions for gentle/quiet distraction, please send your recs.😉

I want a Christmas at Hogwarts. That’s it! Something to remind me of being little again, the safety of books, and having another world to escape to. A full feast in the Great Hall, pranks with Peeves, Nearly Headless Nick singing carols, Weasley’s Wizard Wheezes. A tree with a load of gifts beneath it. The scent of pine and sweet spices.🎄

[thegoodtailor]

So I didn’t go blind, but it’s been a ride...

I’ve been seeing a retinal specialist since March. You wait two hours, you see him for five minutes. You get tested, he keeps the results to himself. He’s never given me a complete diagnosis, he just works with the symptoms.

In June, I got a new pair of prescription 👓 and quickly noticed my vision was like a funhouse mirror. I went back to my optometrist, but she straight up refused to retest my eyes, insisting that her prescription was correct. I went home, tried to soldier through, but the problems persisted. I called back begging for a revaluation, but she kept refusing. She told me I needed to contact my ophthalmologist ASAP. I said it really wasn’t that dire, just—

She then blurted out that I’ve this congenital disease that’s clearly progressing. Glasses won’t help cone-rod dystrophy. Get off the phone I’ve got other patients you dumb kid bye bye.

I pointed out, that after extensive testing, the retinal specialist hadn’t diagnosed me. Why in hell would he have kept that from me? She named the doctor. The doctor who’s medical records she has is not my ophthalmologist, but is a colleague and is someone I saw once before being referred over.

She hung up the phone and I just… curled up into a ball. My symptoms did match cone-rod dystrophy and a quick google let me know that A) no cure and B) blindness.  

Sometimes shit hits when you’re already teetering on the edge (…they come not single spies, but in battalions, etc), and that’s pretty much what went down. I’ve been in a relay race of illness and pain for years. Immune + digestive systems have long since abandoned ship. My brain is sludge. I’ve the memory and critical thinking skills of a punch drunk goldfish. I am healthy for a plague pit victim. I’m a barely functioning zombie that’s just trying his best to care for a mother and a dog.

SO NO DON’T WANNA GO BLIND. I haven’t seen the ocean, a forest, or a river for 14 years. I’m sick of sidewalks and claustrophobic white picket sameness. I haven’t actually lived yet. Like seeing Mark Rylance on stage. I require a long, long holiday and fun and love and some form of disposable income. Live in a place without bigoted neighbors who put out “Blue Lives Matter” flags and paste John fucking Wayne’s face on their red white and blue. Get out o’ this closet, get an education, be more than just a carer. Read a book! Read. A. Book.

…after a period of despair and stomach ulcer woes, my last working brain cell did finally realize my vision was more blurry, but less distorted, while wearing my old glasses vs new. Thus pointing to an issue with the prescription, not my retinas.

So a couple weeks later, after my father and his lovely family returned from their holiday, I begged him to come over and ferry my sick ass around so I could retrieve the release forms and pick-up my medical records.

Lo and behold, tests show I don’t have cone-rod dystrophy (though the symptoms are a match). All I’ve got is a list of abnormalities that are in the process of being diagnosed.

I mean, an educated guess says these health issues point more toward an autoimmune disorder than anything else. Unfortunately, medicaid has started blocking avenues of treatment and referrals, so it’s all… come… to… a… grinding… halt.

It took me two weeks to write this pity party with visual accessibility software and a brain that’s being slowly digested by the Sarlacc. Thank you for your indulgence. 🤦🏻‍♂️

[thegoodtailor]

A #BlackSails fanboy’s dream come true. Once again, all my love and gratitude to my #FathomsDeep Twitter buddies @ShippingDragons @KarenMHJ @SaskiSask @oh_pestilence and @fireinthehole79 for this Urca de Lima level pirate booty. Still weak in the knees and over the moon. 🗡💀❤️

[fairweathermyth]

I understand you believe we have business. News of the Bahama Islands of some sort, Mr. - what is it?

[urcadelimabean]

reunion kisses 💕

“You were dead.”   “Not the first time I’ve come back from the grave, is it, Jack?”

[jadedbirch]

For those discussing Jack’s tats 💕

[serpounce-moved]

[luluxa]

Jack, requested by lovely @sunneinsplendor who took Toby Stephen’s autograph for me :) And since it’s Pride Month I improvised a bit :) 

[thegoodtailor]

JACK: You have an itch that needs scratching, go with God.

[captain-flint]

You people.

[thegoodtailor]

SATURDAY LIVE TWEET OF Ep VI (Ix6) at 11am EST!

Presented by @BlackSailsCast

Tag Link: #FathomsDeep

Time Difference Calculator

Join the crew! These live tweets are a great way to meet other fans and socialize.🍻

If you’re new to the podcast, do have a listen. They have fantastic episode and character analysis, as well as in-depth interviews with the cast, crew and creators of the show.

[thegoodtailor]

“As messy as your life can be, there has to be a window you can escape through...”

The last six months have been like juggling knives while blindfolded. My vision took a sudden turn for the worse, various chronic health issues started kicking my butt. Money’s been tight, I’m not breaking even. My ability to function as a carer is… it’s just not happening. I’m a mess. Looking at the news everyday and just trying to get by, it’s impossible not to feel crushed by it all. Depression, man. I just can’t shake it.

I think In the whole of 2018 I only managed to finish one TV series, one audiobook and one album. It’s so hard to concentrate and engage. All my attempts at pursing a creative outlet have either met technical problems, visual ones, or just no free time. Squeaky hamster wheel of stress.

The physical stuff cycles, so some days taking a shower feels like Everest. Last time I got on my bike to get groceries, I could hardly get out of bed for the next two days. At this moment, a top 2019 goal is to become ambidextrous (cus the joints in my right hand are fucked). I’ve finally hit that point where activities that were previously hard on my body/eyes, are now debilitating. I grab any chance I can get to lay down and try an’ disconnect.

And yet… and yet… I think I’m actually getting it together. I’ve hindsight. I’ve gotten through 15 years of this. I wish I had more support, cus you can weather anything with the right people, but what the hell. You pick yourself up, you keep going.

(My sight is so messy It’s taken me a week to write this up. I’m still waiting for that referral to a specialist… god, I just want to be able to fucking read.🤞)

~ Cóz

[thegoodtailor]

FRIDAY LIVE TWEET OF Ep III (Ix3) at 9pm EST!

Presented by @BlackSailsCast

Tag Link: #FathomsDeep

Time Difference Calculator

Join the crew! These live tweets are a great way to meet other fans and socialize.🍻

If you’re new to the podcast, do have a listen. They have fantastic episode and character analysis, as well as in-depth interviews with the cast, crew and creators of the show.

[thegoodtailor]

SUNDAY LIVE TWEET OF Ep II (Ix2) at 4pm EST!

Presented by @BlackSailsCast

Tag Link: #FathomsDeep

Time Difference Calculator

Join the crew! These live tweets are a great way to meet other fans and socialize.🍻

If you’re new to the podcast, do have a listen. They have fantastic episode and character analysis, as well as in-depth interviews with the cast, crew and creators of the show.

Daphne recently interviewed our very own Captain Flint (Toby Stephens), so absolutely check that out if you haven’t.