Translation: A blog so big I’m a bit worried about it breaking BZP.

Greeting again pretend-friends! 

Stacks of stuff from the home reno I’ve not individually posted but feel funny about doing so redundantly! Because in the excessive room-by-room Docs I planted them.  But here are a few of the decorations/homey Hapi-mess projects from the farmhouse. And new projects I’ve been too absorbed in/too sick  to document/edit. Sorry for over-downsized picture quality here and incoherent rambles!

~Older content~

 

Embroidery wreath pillow, 10 hrs.

 

 

The “UP” movie inspired house for my alien children-from a freezer box! Made from cardboard, leftover paper drywall tape, wood & school glues, a bunch of paint mixes I used in the home here, and twist ties. Window frames are cardboard covered in masking tape, then painted. Door knob and doorbell are felt furniture feet. UP inspired, as it’s missing the side window and roof extension. Does anyone know why the official set by LEGO does not have the side window or house side roof? Was it structurally impossible? 

 

Hot air balloon!

 

 

 

 

The ball was a horse-toy, I think? A thick plastic ballI I found in the stables. It had to be bleached for a hot air balloon! Began by making a barn-yarn (string) macrame net. Pattern for fabric cover made by marking with electrical tape and paper drafting of the dark lines. Basket made from chopping the handle off an ordinary one and painting with KILZ primer. White balloon fabric is PUL, red is slick material from an old vest I’d made for myself (out an old vest of my dad’s). Topstitching details. Seam taped together in back, then hand ladder stitched. Wooden beads are from a rusty jar I found in our barn. Canning jar lid ring for fire area thing. Made tiny sandbags from drop cloth and added a bandana. Tree branch and plastic barn-yarn for a pulley.

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What you see VS reality:

That absolutely is my mom murdering weeds with her Mother’s Day Machete.

Eucalyptus hanging

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Made by cutting out over 200 fabric cotton circles in three different sizes! Math estimate based on spacing/desired branch number. Cotton circle sewn with a little opening. Assembly line sewing style is such a pleasure! Sewn using my machine on a lapdesk on the floor, back propped against the wall. Cut apart & turned right side out while wet. 

Octopus ironing board 

Ironed while tucking raw seams in, then added center seam to sew together. I hand-kneaded and squished them into the 8-color mix and hung them across a paint extension cord and bucket drying rack in the basement. And yarn for stems. Later poked the holes with leather awl and handsewed each leaf on with tex 70 upholstery thread. This splendid stick was selected by my mom from a newly toppled yard tree, I miter sawed to fit. Yarn and nails on top, tiny ½” tacks and reinforcement thread on each strand to hold

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Stenciled fairy flags from my ancient x-acto knife PUL stencil, cotton fabric sponge brushed with alteration tint of the kitchen wall paint & backed with PUL. Strung up with little yarn-let cuts and some of the shiny plastic spool of wire.

Motif panels are made from cotton muslin and backed with PUL. I cut/designed the stencil from an art canvas material many years ago. Foambrush sponged with extra wall paint (from another room). Sewed around each curve after drying and individually tied all threads inside. Yarn tassels, hand embroidery floss french knots.

 

Shutter flower pots, a birthday gift for my mom. Made from the doors of the rotting hall bath vanity, chalk painted (baking soda version). Little pots from leftover floor scraps are tiny tacked & wrapped around a giant cardboard tube (gift from family friend) that I chopped with my mini miter saw. String from the massive roll found in the barn to match the rest in the house. Flowers made from laminated copies of Wildflowers of American antique prints (my grandma sent to me a few years ago). 

 

And my mom's birthday bounty!

Excessive decor and food photos!

 

Artgifts posted prior, laminated 2D flowers, cheesecake & bakes, & for it finally occurred, origami bird! Napkin, but really a paper towel! Fold Guide Made makeshift mushroom & cowbaby magnets for my mom’s birthday. Printed some scientific mushroom illustrations and laminated, wood glued onto the plastic sealed magnets I cut off of a ripped white shower curtain (the one I’d been using as a tablecloth!) 

Sheet from Lawman friend/HUD house for temporary tablecloth. 

 

Mum, there for fun

~m o r e t h a n j u s t a b e a r~

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Raspberry lemon cheesecake, turmeric +raspberry drink powder tinted buttermint dough. Because it’s what I had! Fondant, transportation, and funds are far from me. Fun game to find substitutes to suit

Faux forever flowers were an impromptu b-day idea. I found an envelope of Wildflowers of America Smithsonian prints from my grandmother and it hit me. I had to scan them, print copies, cut them out and stick the scientific title on the back. Laminated and placed into the Leaning Green Barn found green vases, and these narrow “Avocado Hot Sauce” bottles from a discount grocery store. 10 cents well spent!

 

~Actual New Content~

The beauty of food 🥮

My mom got a freezer as she buys discount ingredients in bulk when on sale & for years our custom has been to freeze homemade meals. I love baking and freezing. And other randomness because sometimes it’s 3 am and I feel like making quiche and such. 

Also, miraculously, a kind Instructables staffer told me my LEGO dress tutorial (https://www.instructables.com/LEGO-Minifigure-Fabric-Gown/?amp_page=true ) qualified for one of their contests, so bumbled into that by chance. They generously sent a gift card for being a finalist, I filled it out in my mom’s name, but she bought an Instantpot for me to experiment with. She is so unselfish!

I’m overjoyed over the fancy food tools!  It's always been terribly difficult for me to use the stove asstanding was hard, but using it in a wheelchair where the burners are shoulder height is a Snow White and the Seven dwarfs experience. 

 

My mom bought some “overripe” strawberries for groundhoggy bait, but I, being a feral scavenger who mourns waste, had no idea these were supposedly second-class strawberries and treated them as fine delicacies. ❤️ Sorry hoggies! 

 

Salsa and vegetable dishes freeze finely in muffin containers, but the regular shape metals do work a bit better!

 

Chicken, grape, walnut and cream cheese pastries (lots of these are frozen in the pictures!)

Walnut oat + chocolate dough drops. Oat buns are fun!

Chocosquare cake + almond cinnabuns! Peanut caramel cube cookies! Apple pastry!

Banana breads, biscuits, oatmeal cookies, raspberry muffies, lots of cookies as they are mom’s best beloved baked burgers,

Instant pot soups frozen for easy momwork transport & heating. Jars from when she was canning the most delicious chicken in our old life. Mayo jar lids fit (and are free!) quite perfectly upon the narrowneck pints!

 

I adore King Arthur flour recipes as mix & match pastry bases. Buns! I've had a hard time with yeast breads since my body has been spiraling more, the rise times are hard to handle when I spontaneously crash or sleep at all hours. 

 Yeast rolls, buns, French breads, personal pizza, burritos.

Greens & cream pastry, quiches, potatoes and fiesta pasta. Walnut garlic Italian buns. Instapot beans are a blessing! 

Impromptu cookie bake batches because tree cutting fellows were here and hungry, and mom was around for their delivery, so no photos fancy and I forgot entirely to take one of the giant chocolate chip cookie batches.

 

Starbiscuits! Waffellows! Yeast buns and cookies!

*Not shown: me crying from pain while cooking because it’s a grand amusement/distraction! What am I supposed to do, watch TV? Not for me. Cannot wait to be hungry and able to eat this stuff/normally again!

PS: I promise not everything I cook is bread based, these are just the pretty-picturable pastry dishes. 

"We elves try to stick to the four main food groups: candy, candy canes, candy corns and syrup."- infinite wisdom from Buddy the Elf.
 

My mom bought me a vehicle. 😎 A trolley for towels and dollies! And me to lowride slide on for a few hours when I’ve crammed my wheelchair into the tub for shower hosing it off and it’s drying. It gets quite dusty! I have no idea how other people clean their chairs..and apparently felt no need whatsoever to investigate this. 

Was extremely difficult to transport thingies prior! 

 

A bonsai tree (juniper variety) made tiny!

Pipe cleaners wrapped fabric strips then in embroidery floss (now questioning why I didn’t use yarn for less waste) and painted. Stuff felt sewn centrally and stiffened with glue. Box made from basement bits of glued wood + filler, stained and polyurethane sealed. Painted the whole tree for a hopeful look of reality. Dirt is made from coffee grounds and Elmer’s glue poured into the wooden pot lined with plastic wrap.

 

Norwegian inspired Birdy ornaments in honor of my mom’s roots. For tiny Christmas gifts. 3hrs each, if I remember correctly (too tired to check)?

 

Recycled Cards featuring my chickadee mini painting from last December. 

No colored cardstock, found other stuff!

Birdhouse! Homey theme continuing. Penciled while trying to listen to an audiobook of the Pickwick papers. Delightful oddity, I have a frightful problem of beginning audiobooks, abandoning for months on end, then returning. Brain fog beckons in mindless music box melodies while making things. 

15 Hrs. 8x10”.

WIP/test subject Wii MySims inspired doll from May. Because it was time for what seemed like my biannual pain + medical-exhaustion life burnout and I needed a couple hours to escape reality.  Every time I play MySims game I end up making things instead of gaming, last time I made dollhouse furniture, this time a doll. I am amazed at the patience of gamers. I guess I need a weird amount of physical evidence of what I’m doing with my life to feel fulfilled. 

Doll needs lots of alterations to the face and head, she’s additionally in a paper towel test dress that is quite hospital gown style. 

May embroidery inspired by my mom’s tastes. 

Randomness in terms of stitch, sewn into circles in case they get framed or something. Gifts for somebody, probably my mom? I’d like to give her all the things but there are a few other humans I know exist and it shreds my soul trying to figure holiday gifting out. Been trying to make one copy of each one for her to keep. 

15Hrs, 12 hrs

Little yellow lassie! Like her original friend. 

Either for my mom or maybe my honorary Granny. I am happier with the face on her than my first. First one scares me a wee bit. 

Pumpkin friends! One by the name of Beatrice! Because I was weakflattened on the couch, conscious but not enough to coherent so tried to easy knit a bit. 

 

The origins of Lady Beatrice (who is a pseudopumpkin and an eggplant): 

 

Baby and baby goat, belonging to kind local foundation person and possibly harvested from their Facebook 17.5 Hrs. 8x10”

 

My mom! 8.5 Hrs. 8x10”

 

Birdy painting, a Holiday Holly Hummingbird! For putting on Christmas cards. 5x7” acrylic, colored pencil and fixatif on watercolor paper pencil sketch. 78 hrs total. Metallic gold paint details. 

My floorflop sewing setup. The lapdesk on the floor posed risk of scratching up the deck painted floors, so I made slider towel socks from PUL and elastic for the foldy feet. 

 

Shirt shop! 

Two button downs for my brother, from fabrics generously gifted by new aunt J. 33 hrs for two, slow as the purple was thick knit and required much hand sewing. Hand bound buttonholes on both because my machine tends to jam on them. French seams. Hoping this pattern still fits him since he’s still a medium though has taken interest in gymnasiums. 

 

And simply a tee from an unwanted jersey flat knit sheet that matched some Macra lace swatches from the stash. French seamed. 4hrs each because I am the snail.

 

Test subject dress for my mom from the lower sheet, sadly this a bit nubby knit-wide. I intended to use the wrong side of the fabric as the outer. but kept collapsing from low blood pressure during this which blocks the brain ability to French seam. 

*presents mom with the Macaroni Necklace Quality dress and apologies* 

 

I can’t calculate how to catch rainbows so I just copy them in my clothes! Hues due for mockery make me exuberant. I get colorhappy!

 my mom began knitting again, so happy for her! She essentially forgot due to the PTSD of our reality. 

Sweetly spun spools into leg warmers for me! Perfectly twinning with the hand-me-down sweater from my new octogenarian aunt!

Normal humans: *t shirt + jeans 😎*

Whatever feral mutant species I am: *Wearing everything weirdo wonderlandian ways instead*

Actually went outside with the sweet ride (wheelchair) once in March, prompting proof in pictures and pseudoswinging & chainclinging. Just porch pillar plops in the sun fits my function level better. 

Christmas/bro birthday stash growing and wraps getting going. The hard part remains, choosing what’s for who! 

 

And a-still-on-my-sidetable WIP in the works I’m actively updating because my body is not something I can trust in: https://www.flickr.com/photos/189713610@N04/albums/72177720310455074

 

Kind human playing piano at Duke cancer center (They send me there for noncancer imaging sometimes, not sure why):

Medical madness has made up the year, I truly cannot believe it’s August and I’m still here! Seven months since the stroke! Surviving! The ER sent me home without any ideas or help that day and my specialists have been helpless. Ramblings below.

-At last in June I got into a local geneticist! They only ran a connective tissue panel, hemochromatosis panel, and hereditary neuropathy panel for my SFN. Under 200 genes analyzed so not terribly helpful, but some things ruled out! Wish whole gene exome sequencing were more affordable, given that now doctors named me “extremely medically complex” and “perplexing”. 

Genetics  *legally confirmed* I have hypermobile Ehlers-Danlos syndrome (type 3, the one that they haven’t IDed the genes of yet and only diagnose from clinical exams). I accurately self diagnosed with the disease in late 2020 after researching why my knee joints were clicking painfully >20 times per hour causing me to limp, and seeing this Instagram suggested post and being able to do the sign: 

I got a Rheumatologist to do an unofficial Beighton test in May 2021 with a positive score, and had a UNC genetics referral place the month prior. They waitlisted me for 1 year, which turned into 2, then they were overbooked and canceled me altogether. I am not even seeing their Ehlers-Danlos page on their site anymore. EDS and its 14 subtypes are chronically changing their diagnostic criteria. I am so grateful for google and trust issues, as EDS diagnosis by doctors takes on average 10+ years. 

 

-This is an odd addition to the Undifferentiated Connective Tissue Disease. Since no painkillers are effective for EDS according to my geneticist, perhaps this is why the UCTD Plaquenil didn’t help the joint pain? Rheumatology took me off it after the January stroke given my drug hypersensitivity. 

 

-The idiopathic small fiber neuropathy might be from EDS, as this is true for some. 

 

-Foreshadowing: https://en.wikipedia.org/wiki/Zebra_(medicine)

 

"I'm paint and porcelain
...Sensitively, I'm not weak, but my
Bones are made of glass
And I'll break if you pass..." 
~Porcelain / Em Beihold

-EDS might explain my past food allergies given the mast cell involvement.

 

-Still awaiting the fourth reread of my abdomen ultrasound. The one ordered after the May cardiac MRI showed that my GI arteries were “crimped”. Wonder why this is why I’ve had excruciating LUQ pain for years.

 

-I decided to try to consume more than 16oz fluid and the few bites of starchy food a day I’d been surviving on since the stroke-until recently when even that was getting more difficult (I didn’t speak a full sentence for a month and was barely able to drink with a straw long after it, so much function has been lost). Starvation and dehydration have been the terrifying normal for me for symptom management over the past three years (GI to this day didn’t solve my non-celiac tTG, severe GI complications, intussuseptions/intestines telescoping, the mucosal abnormality & plume of blood seen on one EDG, ulcers, SIBO, transient gastroparasis, bile reflux, idiopathic anaphylaxis, pain, etc., I was able to tolerate nothing but bullion and bread (glutinous bread for the EGDs) for 1.5 years. But I was gaining weight so nobody seemed to believe this. I kept telling them Celiac disease did not fit and was begging for help. The doctor didn’t even reply to messages most of the time, and held my imaging results when serious complex GI issues came up. Like when the Pillcam bounced off my duodenum x4 times and then stayed in my stomach. She sent me for X-rays and never told me or released the results. I found them in the back door method of accessing via the Mychart care document summary. 

 

The post stroke was even less ingestion than prior and I lost 20lbs.I knew I couldn’t keep living like this, especially barely drinking, though my weight was stable for months. Neuropathic fire. Allergic type reactions ( same ones over the years sending me to ER) on the few days I decided to try to eat an actual meal. The same insane LUQ pain. So for the past >3 weeks I’ve been hydrating and consuming instant bullion again. Takes me 30 minutes to ingest a bowl or I collapse in pain. But it’s so delicious! Been putting green vegetables in it, absolutely glorious. Then the pain, face flushing and exhaustion sets in, an hour passes and the reactions get violent. So violent, consistently like clockwork. The more I ingest the more I reject. Never so bad before as this. Dangerous GI, skin and blood sugar reactions over a span of 2-4hrs, which is a highly useful diagnostic clue. Going to the ER would make sense for a normal human in such a situation, but they would only run labs and give IV fluids, neither thing helpful in diagnosis of my case given this has become chronic and daily and is due to me hydrating and trying to eat more.. At home orally replenishing the electrolytes and monitoring vitals is the current survival strategy amid awaiting appointments.

 

 I thought my episodes of weakness and needing to lay supine in dizzy exhaustion every hour or so were maybe blood sugar lows, but no. My blood pressure is chronically dangerously low (hello salt, please help while I wait on medical care + POTS testing), & the always high blood sugar is baffling. My blood sugar skyrockets from ingesting everything and the spikes correlate with when I get violently sick. The pancreatic polypeptide elevations probably have a great deal to do with this. 

 

-Waiting on the repeat-from-almost-3-years-ago endocrinology referral for the carcinoid syndrome/neuroendocrine tumor testing( that I originally myself requested from scouring research paper DDXs three years ago after my epi-triggered, resistant anaphylaxis began and face flushing. Then loads of other things, later my allergist later saying all pointed to this after ruling out things like mast cell disorders, allergies + HAE. Now some actual biomarkers that fit).. Duke has a whole separate specialty clinic for this very thing, but for reasons beyond me the GI doctor dominated my care, took two years to reluctantly agree I didn’t have Celiac, and then abandoned my case unsolved after countless Celiac disease procedures/tests. My first really kind pediatric GI PA either was fired or quit by this doctor in 2021 when my case got complex. She tried to solve me, wanted to send me to the cancer clinic for MRIs given the tumor rumors, but didn’t get the chance. I gave my current GI doctor one last chance to try/begged for basic GI care. So now thankfully she’s not my doctor anymore, I’m getting a different provider. My mom the whole time was saying it was malpractice the way she talked to me and how the case was being dragged out/neglected/the life-threatening GI complications ignored. And my old allergist, other Duke specialists and new local geneticists were all floored by the GI doctor’s actions. I thought she was actually trying. But after every appointment she left me crying. Because my case is complex, she blamed me. It was easier. 

I message-system debated, disproved, and forced her to remove a mental-health misdiagnosis from 2017 she had placed in Mychart in spite of knowing its falsehood. She was using this misdiagnosis to neglect solving my case. It was initially placed on my records at UNC hospital in 2017, when I was ambulanced to their pediatric ICU and barely lived due to a summer of repeat flus, chronic mystery Illness with GI issues, and the crippling dietary limitations of Alpha-gal allergy. My heart rate dropped to 32 with severe electrolyte derangement. I’d uncontrollably lost 40lbs over the summer, the only change being adding gluten back to my diet instead of rice flour. Crazy to look back on this, they did not run bloodwork for Celiac disease then.

 

UNC removed their misdiagnosis in 2021 after getting my updated charts and genetics referrals. 

This misdiagnosis was prior to my diseases being identified. They placed it there to legally hold me, never telling us it was on my records. Another patient saw it and told us. “ARFID”- A disorder of “extremely picky eating”. AKA, in my case: how to medically kidnap a pediatric patient with food allergies. This added insult to injury given the fact that many delicious foods would literally kill me, and it wasn’t my choice or being “picky”.The UNC doctors screamed all about how Alpha-Gal allergy didn’t exist, how they wanted to put my parents in prison. My mom told them to walk to the other side of their campus and ask the most well-known Alpha Gal researcher about it- who was a UNC allergist. On their campus. Or to call my allergist and get his lab findings. Or simply Google it. The room went silent. UNC thought my illness/allergies were fabricated by parents. Being homeschooled with learning disabilities/lower grade level than typical in school made it an even scarier situation. That’s why I had to stay impatient for three months. I was underweight so they had grounds to call CPS if my mom took me home. I was grilled by psychologists who wanted to remove me from my family on a daily basis. Everything I said was scrutinized. Even after they were educated on alpha-gal allergy, I obviously had no issues with food aside from my allergies and GI issues, and was stoked to eat (UNC hospital food is fancy!), and kept telling them I chronically felt sick. I was actually fed things I was allergic to/ordered not to be served due to upcoming/ongoing allergy tests at both UNC and countless times at the step-down hospital (they sent me there once the insurance cut coverage). They got furious with me for actually eating peanut butter when they sent it, because I wanted to speed up the allergy testing they were dragging out and see what would happen. I was fine and it was glorious! I also had genetic Ehlers-Danlos then, but we, at the time, didn’t know why I was always sick. Primary care didn’t have an answer when I went at age 9. In 2017-18 I had seizures while inpatient, was observably chronic sick and weak to the point of wheelchair use, but no one investigated it. 

 

I stumbled across this website recently in my desperate attempts to solve my own current medical complexities:  https://alphagalinformation.org/what-is-ags/#What%20Is%20Alpha-gal%20Found%20In

I feel inexpressibly not alone by reading the list-torrent of foods and products with mammal products & the infamous airborne reactions. None of this info was easy to access when I had AGS. I had to contact companies about processing and rely on a Facebook group via my mom’s account to not die from food. Bronchoconstriction from white sugar processed with bone char. That FB group kept me alive. My mom had to make our own laundry soap from washing soda. I washed my hair with a block of coconut soap.

Now I’m showing this site to doctors who are unaware of the allergy/condition. Many still haven’t heard of it. One doctor at one ER in 2020 thought I said  “alpha thalassemia” instead of “past alpha gal allergy” when I was talking mid-throat closure (new idiopathic anaphylaxis) and now that’s on my permanent medical record. 

My weird early medical era/The story of how I got Alpha-Gal allergy/syndrome:

The whole gluten free & peanut allergy ordeals. 

When I got noticeably weak/sick initially (over half a life ago) my mom suspected non-celiac gluten intolerance (negative tTG then, ironically, a PCP sent me to a GI doctor who had no idea what to do). And at the time my brother’s ASD challenges were becoming more apparent, 1 year prior to his formal diagnosis of what was then classed as Asperger’s. So for 3 years we three were gluten-free, in hopes of helping all parties (didn’t help me but she tried so hard!). This was prior to the era of easy allergen-labeling. My mom had a time of it baking with the grainy textures of the olden-day quality certified GF brands. We loved her rice bread but it was definitely dense. I started to have fun cooking more around this era, and the dietary restrictions created odd traditions -we had one good GF pizza crust recipe, and discovered cheesecake is a great grain free option. So that became the birthday tradition dish!  Around this time my dad chose to travel for work (only home on weekends), which was a bittersweet blessing because he harassed me chronically due to my sickness and allergies. My mom had two children with different disabilities, one getting sicker. Homeschooling them alone, no family or friends nearby, driving my dad back and forth to the airport in an area we’d just moved to for his local job a couple years prior. I don’t know how she didn’t break.

Then the next year I began to get hives and GI reactions after peanuts and peanut butter. Allergist bloodwork and back prick panel. All negative except dust and grass. Said it couldn’t be peanut allergy. He ordered an in office allergy challenge to confirm. Ate a lot of delicious PB, started reacting just at the end of the 2hr reaction watch period. Sick in their restroom and hives breaking out. They said it was too delayed to be from the peanuts, said to keep nuts in the diet.That was in October.

We avoided the nuts knowing this doctor wasn’t getting it. 

In April, we decided to repeat the allergen test at home with Reese’s pieces (the delicacy of royals). 

One handful, 30 minutes later I was on the bathroom floor gasping for breath with my throat closing off and severe GI reactions. My mom had the epipen but froze in panic-terror on the spot and just sat with me. I kept asking for water. I must have drank 20 glasses that night amid struggling for air. I don’t know how I survived that much fluid but I think it effectively, instinctively(?)flushed the allergen out of my small body. This went on until 6:00pm -12:00 am. I remember playing some kind of Draw a stickman game on my mom’s phone to cope. I wonder if my brother remembers that day. He brought a lot of water. 

I couldn’t say the word “peanut” without bursting into tears for years after that. 

I stopped touching doorknobs and surfaces in our kitchen because my dad refused to give up nuts-and would scare me with them intentionally. My mom couldn’t reason with him.

Strangely- 3 years after this horrific reaction-my peanut allergy inadvertently saved my life -or at least the Epi pens for it did. When I went outside to see the new fence my parents had put up, and a tick came in with me. Found it embedded in my left upper leg one day later-lone star, shining white spot. I dug it out in a panic. My mom had previously wondered if my illness was post-Lyme disease given my health decline after a move & lots of bites. 

Six weeks later I began to get a little shortness of breath and hives. I first noticed it on a day I’d eaten a piece of battered chicken found in the fridge. My dad had just visited my grandma, perhaps this piece of meat had been fried in peanut oil and brought from her house? How could I have so recklessly eaten it? I asked my mom about the meat. It was mom’s cooking. I said nothing and internally quivered. 

Then a day or so later I went into a worse breathing difficulty episode, this one so bad witnessed by my parents. 

Then another episode so bad after I baked some blueberry muffins. Suffocating and hives 30 minutes later. My mom hit me with the Epi-pen as I screamed “NO!”,  thinking it would hurt (I didn’t feel the needle at all) and to the ER we rode. 

Then a few days later, I ate ( some homemade white bread, I think?) I was suffocating again with hives and ER repeat while we waited on an appointment with the new allergist. I’d made lists of everything I’d eaten on the days of the reactions. I thought perhaps it was “histamine intolerance” because I reacted to everything and was nearly starving to survive.

On the first allergist visit he asked me if I'd had any recent tick bites. My jaw dropped and I almost screamed “Yes, with a white spot on its back, on my leg! I still have the scab!?”

“DO YOU KNOW WHAT THIS MEANS?” the quiet doctor who barely could make eye contact nearly screamed in satisfaction.

I said no. Then he explained Alpha-gal allergy, and said he was almost certain that was what was happening to me. 

He ran the labs and it proved true. 

I was insanely hyperreactive. I’d not even had any directly dairy/mammal based food on the ER days. It was the white sugar which contained cow-bone-char from the bleaching process. 

So my diet for 2.5 years was 10-20 raw/whole foods that we had to inquire about the processing of. Delicious things! Just very few of them. And every product I touched we had to contact manufacturers over. So that sums up my experience with the Alpha-Gal allergy adventure. 

It's still hard for me to grasp. I was nearly medically kidnapped. After almost dying in the pediatric ICU. Removed from my home for three months. Held in the psych unit of the hospital (the patients never hurt me, but some threw things, flipped chairs, and screamed. There was this dark forest painted solitary confinement room the UNC nurses would lock the kids in when they were getting violent or rowdy. They'd give them sedative drugs, watch them via a camera and speak to them through a speaker. It was horrible to witness. I just stayed near the nurse station and did art/crafts where things were most peaceful/safe). Apparently this kind of thing/being blamed by doctors is common in children with EDS.  I am so grateful this can never happen again. But I did have fun drawing people’s pets and decorating the hospitals. And the nurses adopted me. ❤️

I was (freed?) discharged in 2018, though sicker than ever and with a rather apparent abnormal stunting, but thankfully having at last outgrown the food allergies. 

I would never darken the doors of doctors ever again. My age and gender have made medical care a nightmare. I was wrong. 2020 came, along with my body breaking entirely and undeniably. When my throat closed off, I was limping regularly, had seizures, and relented. So in 2020 me and my medical PTSD became a chronic customer of doctors.  Thankfully by this time I’d learned how to advocate for myself (MyChart messages, photographs, printed notes), read my own results, DDXs + visit notes & do my own research. And question everything. 

 

My disease diagnoses matter more than I can say. 

The almost six years of blame…the shame-stamp of a mental health misdiagnosis that many doctors got off the diagnostic hook with. Even knowing they were wrong, I blamed myself. Hospital hostage, underage, underweight. Medical gaslighting. I hear about people with early diagnosed genetic diseases and ponder what kind of medical care they must get. 

 

Edit: I am also so grateful for answers as my exdad used to accuse me of faking being sick for attention/because it was inconvenient for him. Then after the long hospital stay he treated me like an object of shame. I only realized last year that he never once called me during those three months, only came briefly with my mom and brother.

 

I so heavily relate to Amy Pond from Doctor Who.

Waiting on doctors for years

 

Told things weren't real

 

But where is the crack in the universe that was sucking my life away? There was one in my old room we could never keep patched on the left corner of the door frame, humorously. Yay for moving from that house, haha!

 

I’m free, my record is clean, my name is redeemed and I have a chance at equal care?! 

*joytears*

 In other glorious news, I also finally have a referral to the Duke NET clinic now. I hope they'll accept my disaster case. I’m burning down bodily daily but am like 82lbs of unrefined desire to live! Closer to proper care than ever before! 

I can never express my gratitude for my mom managing all the appointments and driving me 3-4 hours (one way) on her days off every so often. And now monitoring/recording my vitals after I attempt a meal and it mugs me instead. 🫠

“Though hope is frail, it’s hard to kill.”

“And I don't really care if nobody else believes,

'Cause I've still got a lot of fight left in me”

General goofery and jollytimes to attain equilibrium and good-spirits to sign off with!:

(P.S. Sadly I did not knit the groundhog, 'tis a GIF. Also, more importantly many wellwishes from Mum)