Search the Community
Showing results for tags 'baby yoda'.
OoOoh, sweet September salutations! Fantastic Fall to all! Where to start? Is it being to real to reveal that I’m blogging from the floor? It basically became the disabled diaries here somewhere.apologies to all if I’m too real/honest and for my punctually pitiful proofreading. Oh well, of current creativity I come to tell! “You are literally Buddy the Elf” ~my mom’s reaction to what I do while she’s at work. Watermelon! From when my mom had to pay for tree removal due to their closeness to the home. I asked for the slice of tree, she kindly hauled it to the basement for me. Leftover house paints and mixes, leather jacket seeds. Now all-season shelf porch decor. Melons are Luna & Shasta attractant, apparently. Do you truly love your brother unless you visually yell at him (translation: excessively photo spam) him at all hours about your shenanigans? My slightly sloppy hanging of my Tangled +Baby Yoda 2021 dress, done for the upstairs hall wall. Clothes gently embroidery thread tied to base. From the leftover plastic from the display-dustoff covering my wings recently. White base is an old fleece throw, coversewn in an extra sheet, hung with mini-nails. *the only context in which I shall get my nails done* While bad blood pressure bumbling about I made some fall decor starting September 1st! *Vince guraldi trio jazz echoing about* inspired by me actually being forced to leave the home (doctor visits, hotel stay overnight, thus frolicking in Target and hugging every weighted plushy I could see with glee) and seeing fall stuff. Fall frolic frenzy for my mom who never had any decorations before! So many things she’s never had, like adequate house things, being unable to access the family bank account prior due to oppression. Onto a new era, where she is the queen! Still somewhat in the zone of making stuff for the home as this one was Full of Nothing. Especially exciting because my mom adores fall and Thanksgiving the most. She mourned the overlooked holiday, last year was tough, and twas time for a change! Have to chase those sunny spots of life, the sweetness through the spice! I have come to realize I’ve made our home look like a children’s library! Or an elementary school?. Do they look like this? UNC children’s hospital-school did decorate beautifully and I loved it. School there was great, 2 hours of Real work. And more often the more exciting options of: “a storyteller is here”, or “a bird man has brought you all owl pellets and has an owl with him” or “an elusive, actually employed marine biologist has brought live sea creatures to pet” or “a traveler has brought a giant circle of African drums ready to be played” or “art teacher invites all to draw a cartoon turkey” or “headband making event on floor 6!” “want to go check out the library on the 7th floor?” These amazing souls made my hospital-hostage situation unbelievably happy 🧡For the record, they let me keep my owl pellet bones (Sorry, nurse Danielle, if you’re out there..for you having to touch them..) and they are in our Lindt truffle Christmas ornament to this day. Leetle mouse skeletons. In a plastic bag though, I’m not a barbarian. Little frying pans for the alien children (mom bought measuring cups, they look too much like cast iron not to borrow for photos!) Aunt J’s hand me down blanket, little beanie baby ferret, pillow swaddled in aunt X’s orange scarf gift. I save all the greeting cards for recycling, this wreath was on one and laminated + little leaves. Masks saved and laminated from last year’s Amazon toy catalog. Must keep my Children clothes in trash, of course. Pumpkins posted prior by the wood stove. Extra carpet tiles from N&W/renovating saved for a fall rug color pop. I was last monthish years old when I realized the point of pillow covers we so they could be seasonally switched out. I had NO IDEA! Pillow covers made from pumpkin colored jersey sheet & matching Macra lace swatches. Now my mom can match the pillows when wearing the recent macaroni-necklace-quality dress as all normal humans aspire to. Buttons from grandmother’s old shirt. Pillowcase and Aunt X’s gift scarf strewn over furniture shoulders for color! Laminated leaves! Library vibes! Did not have a plan as usual and happy happened. Mid falling asleep I had an epiphany (to me): Cut up the vanilla (translation: Manila) envelopes into print paper dimensions and print monochrome maple leaf outlines on them! MS paint to the rescue. Worked happily, I added leaf veins on the backs with a sharpie. Then I found wrinkly orange tissue and got to chopping some from that, each with one simple center thread noodle. Cut, cooked & cut. The plumbing supply barnfind pumpkin from last year, & lil handmade leather returns. Wreath gold chain add-in because ideas were not flowing. Smol doll made by a wee-me as a stocking stuffer for my mom. Redressed in clothes made for my Lammily doll long ago. The company that stole my photos of my kid-created doll fashions I posted from my mom’s account (I often disclosed this because people kept trying to buy my creations), in a fan-made handmade Lammily FB group. And used the photos in ads on their foreign distributors’ doll buying sites. I accidentally discovered this myself by going on their worldwide distributor’s site to see if new releases were up in other countries first. I was shocked to find my doll photos & fashions all across them, along with a few other members’ and Etsy sellers. I, confused and crying, publicly exposed this on the group. Then the Lammily designer himself, his family members, and his PR/salesperson all joined the group suddenly and began posting. Fans were furious. I, an oblivious kid creator, busted the crowdfunded Lammily company by chance. For stealing children’s doll photos. My awesome brother wrote a cease and desist letter and we sent it. The stealing stopped and the photos were removed. The creator and their gang still stalk that group to this day. This kind of ruined the doll I’d once loved for me (I even rerooted my 2 dolls’ hair with Saran doll hair, one tiny strand at a time. The original hair was so poor quality and became a frizzball), but I had dreamy design times with her over many insomnia-sick nights, and learned from experience why people use watermarks on their photos! Maybe one day I’ll drag out some of those miniature project pictures/or retake and post here. This was how I first got into leather shoemaking, just 1/6th scale. Then Alpha-gal allergy hit months later and we had to pack up all my leatherstuff. Had a scrappy carpet tile, turned into a twisty stick tub with pumpkin beady tuft thing. Because that’s what you do in Fall. You home-alone wheelchair down by the creek, hand yank fine vines off a shrubbery, get your wheels mighty stuck in a hole, and ultimately end up unsteadily staggering back up the hill pushing the sticks in your chairseat-like you are simply a forestfairy godmother taking them on their sunny midmorning stroll. 🧡 Hummel shelf got a little late-year love. Impromptu invented some laminated hangings from an ad for plates in the pie-covered magazine, Vanilla envelopes + back mosaics from a greeting card I couldn’t part from. First attempt at wreath (base) weaving from trees/branches. Yew tree cones, wirebound feathers saved from when we had to wing-clip our Golden Comet hens (neighbor was not a hen-friend) to immobilize them. Cannot believe these wreaths are free from trees! Thanks to my mom wheeling me out and chopping stuff down for me before I hysterically had to flee from this one wicked hornet-bee. Why were these creatures given extra legs, stingers, AND wings? Terribly unfair. She cut down so much and I nearly collapsed in my chair out there trying to make bunches of wreath bases for all upcoming holidays, not wanting the dear trees to go to waste. She promised there will be others, but is this true outside of summer? I got this far before wilting entirely. It’s hopelessly 1000mph enthusiasm at any project I’m into. Acorns & Kaya. Thankful for all the tiny pinecones about the acres here! Oh! The sunflower wreaths! Van Gogh vibes! I got hopelessly unplanned obsessed with Fall-ing things for my mom and this happened. Quick crochet with a chubby hook.9 petaled and 9 per wreath. Soaked in Elmer’s and wood glue diluted and dried to stiffen (after turning my fingernails yellow using the last bottle bits of experimental Wood Hardener on them without gloves. I was out of glue, in the basement floor and too tired to care about caution. It worked well but I ran out of it!) Twist tie attached . Base is a ring cut from extra carpet tiles that I wrapped in ½-⅝” strips of shower curtain fabric. Barnyarn hung. (Random honeywand made for a doll's bee costume long ago). *You Are My Sunshine song on repeat for effect* Oh! And a little photo size sketch of my bro in Octo’ 1999 for my mom, also. 5.5hrs while in sick stupor, on a clipboard, in a car. Anxious to get obsessed with drawing again, I cannot be a bit balanced! A billion beautiful things to do! Autumn arbor from cake holder box cardboard circles and covering in PUL fabric, cork from my shoemaking stash, flooring scraps,+superglue on grandmother’s sparkle stash. And glitter paint. For the kitchen, to correlate with some other orangish round decor I’ll show below… The orange slices were a glad-ccident. I packed (for my mom to eat) oranges for the doctor stay-trip recently and they were too old and squishy. I planned to dry them in the oven for decor, but the others were surprisingly not rotten. But the want of seasonal ceiling citrus stayed, and I had more vanilla envelopes, couldn’t say nope! The juicy bits brightened with orange highlighter. Printed from monochrome clip art as printing the orange ink ones on yellow paper gave me lime slices. Saving those surprises for spring/summer! Tied to crochet chains created with my mom’s megahook. Citrus garland was a tad thin, made a Macra lace & sheet scrap garland to thicken. Corner shelf stolen from closet upstairs, free from the HUD home. Sturdy succulent stand! Oh, but I’ve not yet told of that, must scroll to get to that. Sorry for discombobulated me! Cut carpet tiles into centerpiece. Shabby lil fresh woven wreath because too tired to try harder. I tend to take out the legs of the dining set with my wheelchair. Awful to make mom’s new homey look shabby! Daring to destroy my spring chalk paintjob. It occurred to me that I should knit bulky bumpers for them! Chunky chair cozies/ leg warmers/sockies. Covered in plastic sheeting fabric scraps, cut from comforter & curtain clear plastic bags (for durability from my wheels & maybe messy meals?). Fresh on the furniture feet, finished from last Friday night to this recent Friday at 4 am! It also occurred to me that the carpet tile placemats I made prior work better as seat soft spots/pseudocushions. Good as a goose, if ever not in-use! Extra carpet tiles = me ecstatically “making” tons of faux rugs everywhere I go: A brain backburner idea from last year was carried out thanks to twenty minutes in Target. Sculpted smol succulent children for my mom! A due-to-my-dad deprived plantperson. That white pot is my mom’s mortar and pestle base with the rubber bit removed, but she doesn’t mind! The baby baskets were born before though! Saw a Pinterest paper cup weave, had a plastic one from the hotel trip and tried it with this plastic barn yarn. Then doing that caused me to instinctively figure out how to weave it from scratch, so the tube-oval two are not cheat weaves. Made from Oogoo! Have you heard of it? I did when doing DIYs from Tree Change Dolls long ago. It’s poor people’s Sugru/sculptable rubbery clay. The recipe I use is equal parts cornstarch and interior caulk. I made it a few times prior to the onslaught of my extreme allergy restrictions. You can add acrylic paints if you want colors. It’s amazing stuff! Has anyone made LEGO/Bionicle parts from this? I just mixed up a white batch in a lidded cottage cheese container, shaped, dried, brush painted with wall + acrylic craft paint mix, and sprayed them with art fixatif spray as I had that. For the dirt, I wrapped a medium rock with white PUL fabric and placed it inside for weight, then covered with brown jacket scraps. Stuck on the wrapped rock top with caulk. Similar process for this mortar and pestle turned planter. Dirt is web sewn on the underside onto the felt filled rock PUL piece. Succulents secured to the dirt with a dab of caulk. *Mom being scared to open it saying “it looks too special!”* *Me who knows the wrapping is from coffee filters, paint color chips, and a sleepytime tea box quote* I’ve recently realized I’m basically a cat. I like leaving gifts for my humans and vanishing, don’t say much/am skittish, nearly nocturnal, fall asleep in the sun, like climbing and sitting in/on things I shouldn't, and am floppy/hypermobile. But I don't have fine cat hair, mine is the crunchy texture of curls. The trio stays in the window, the big one on the corner shelf by itself. Mild Autumn attack on my mom’s room. Just flipped the bedding to red side & swirled out some scarves. Sheets were a forgotten gift from Aunt J. last year. . Added one of the sticky wreaths on the mirror with quick chain crochet colors. This messy make from millions of moons ago, paint by number canvas that I enjoyed ignoring in the utmost. Mom’s Brownie bear is finally the rightful owner of a long ago hospital knit plush sweater. Mom’s childhood doll’s green-trimmed and sleeved dress tucked & poofed into a pumpkin, twisted Cinderella style? Her face stains are from when her prisoner brother Sharpie X’s over her eyes. Ink removal we should retry. And that finished a funtastic full fall haul from September 2nd to 22nd. I am happily physically shattered! Unbelievable Autumn has come! Our first one settled here! I love the leaves, our old house had only sad pine needles-painful piles to play in and full of ticks. It’s the greatest existence I’ve known here with dear Mom. Wish she’d gotten her own place years ago, haha. So peaceful, no shouting, stress or scary-loud television. Cannot wait for bro to visit again, we hadn’t even finished the hall bathroom when he came at Christmas. Now ”Ta-da! List”ing what decor I should make at Christmas. Planning the color scheme and theme already. Cinderella aesthetic, chores + clothing little house friends…if I can call a soap dispenser my friend. Flooring scraps and leather thread, at least the poor thing is not naked! Culinary crafts! Spice crumb cake in my misfit sized cake pan stack. Chocolate chip coconut oil muffs with walnut & choc on top. Spice and sweet potato sweet squares, walnut chocolate pastry pods + brekkie granola rounds. Cheddar cheese petite pizzas, I was thrilled to figure out they fit in coffee cans for freezer storage. Olives feel luxurious. The mysterious ways of mayonnaise. It PROTECT, it expires at precisely 10:04 am. Plus the poor broccoli baby missed in a morning rush. Light and fluffy butter loaves (actually oil because $) that were altered from a Texas Riaddhouse roll recipe and this a bit stubby. Horizontal slicing to the rescue & flash frozen on trays as always. Grateful to have grabbed our four lovely loaf pans when we left. Oven Naan breads, a fan of the King’s (KAF brand) recipes I am! Onto the +3 abandoned alternate art endeavors! One sewing, one drawing, one painting. Amazing how little I am accomplishing at the moment, haha. Impromptu organizing has been happening lately, in the office and kitchen. Inspirational at 5 AM when I can’t find my Thing, that Thing. Or my mom’s Thing. We probably totally crammed & chucked stuff in after moving. Finally feeling like a proper place to live.❤️ Love and leaves to all this Fall. May your Autumn be awesome 🧡 “Your life is an occasion. Rise to it.” ~Suzanne Weyn Basically I’m low on Real art to show right now, fell for Fall, + since late July it’s been a daily battle because of hydrating and actually eating some glorious food, and trying to figure out what on earth to eat. (Spamblings below about my medical and parent stuff that I am not sure how to use a spoiler tag for: (Kind of outdated content because I am the snail.) Some of these *holds back hysterical happy screams* magnificent daily meals of 500-600 calories I’ve had the unspeakable joy of ingesting. Mostly protein (severely low BUN on labs), bullion, salty sauces (and small amounts of the miracle of Mayo, cheese & ketchup) , and beloved vegetables. It stays in my body for 0.5-3 hours. I assume some of it must be absorbing, at least every gram of glucose spikes in my blood. An apple throws me over 250 at the two hour post-first-bite prick. The persisting hyperglycemia coupled with the rapid rejection and fluid floss are a true medical freak. three years since eating adequately/more than a meal of daily broth and (celiac testing) bread, or post stroke few bites of starchy stuff + severe dehydration. I now cry from gratitude while savoring such treats, then cry from pain trying not to blackout on the bath floor for the next few hours. This trade off/post ingestion punishment has absolutely improved my quality of life. I’m old and want to eat. If I were even given the choice of “last meal or continue living with feeding tube/TPN” you all are invited to the feast. There will be pizza, hummus, salmon, ice cream, cookies and watermelon. The post drinking and eating reactions are much worse-for gory details of what that means: 0.5-2 hrs post ingestion = 15-30 (EDIT: now it’s typically 30-60) urgent GI episodes over the next 2-4 hours with low blood pressure, LUQ stabbing, face flushing, some throat constriction, tachycardia & hyperglycemia. Massive lower extremity edema. Samples tested, confirmed nonInfectious GI reactions as I already knew. Just the result of food and water. Leaving the bathroom is too risky, better to bring a floor pillow and try not to pass out. Thankfully with symptoms so severe I cannot be dismissed by doctors-they now keep telling me go to the ER for IV fluids. It’s exhausting to go to the ER with 3-4 diseases to only leave with needle wounds, and “I have no idea how to help, we are sorry, follow with your specialists and PCP” from frightened looking doctors, though. I don’t know if they’d do any useful tests/imaging. It’s been years since scans. Thus, I am surviving with concentrated lemon juice + Himalayan salt in Gatorade zero, coffee, and eating spoons of straight yellow mustard all day to replenish my electrolytes and bring up my dangerously low blood pressure. I’m drinking over 250oz water some days because of losing massive fluid amounts. I think I’m sleeping like 3 hrs a night, often? My electrolytes were perfect at the last PCP visit a week ago leaving my doctor absolutely impressed (because she told me to go to the hospital that day, but knowing I was okay, I didn’t). So apparently “bio-hacking” by ear is working. The basic blood panels did shockingly show useful info-I have idiopathic neutropenia and my BUN/protein is unsurprisingly severely low. Eggs, cottage cheese, Chicken-all so good, oh my gosh. It’s been years since I’ve eaten anything besides bread or broth. Eating so many beautiful vegetables, broths and some dairy, Mayo and proteins, I cannot wait to eat starches and fruits soon. They send me into hyperglycemia coma mode currently-even tiny amounts. I’m up to one ~600 calorie meal a day, I feel rich because it has been 3 years since eating this much (Metabolic m e s s. I, the inexplicably self-sustaining life form, haven't lost any more weight, in spite of my body rejecting everything ingested within 0.5-4 hours, so that’s a win, at least? Guessing the hyperglycemia has a role in this.). Totally worth the next three hours on the bathroom floor, haha. Finally getting some IG posts up thanks to this. I’m amazed at the skilled humans who can eat/drink (like multiple times in one day!) and function afterwards, please teach me your ways! I don’t recommend this at all. DIY glucose tolerance testing. Overnight no drinking or eating, then a breakfast of 17.3 Twizzlerschoked down (while timed) in 5 minutes (updated number from Sci papers given 2023 nutritional content/this size). I’m shocked by the blandness of the candy, was mildly improved with salt. Then glucose, BP & pulse recorded every hour for three hours. My PCP couldn’t order an oral glucose tolerance test. So I went PubMed and Mayo clinic vigilante ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3781564/ https://www.mayoclinic.org/tests-procedures/glucose-tolerance-test/about/pac-20394296 ), conducted my own test and documented photo results/reactions in graphic detail. Test included losing consciousness on the bath floor with Gi epsiodes and sleeping almost entirely for two days. But yes! I was correct and my pancreas is pitiful. Doctor was so shocked by this she ordered a simultaneous office lab draw with my home monitor to calibrate/make sure my readings were real. They were 3pts off-highly accurate. So now recording the wacky high blood sugars I’m having in spite of barely eating & not even even any direct grainy/starch based carbs. I (& my mom when available) am taking my vitals and blood sugars through the day (at least 3x) , recording my daily intake of food and fluid and all the 10-30 daily medical episodes and symptoms. Then my mom types it into a Google doc. The point of this is so doctors can grasp how I’m actually living when sent links via the medical mychart messaging. I think I’d be horrified by it if it weren’t me in this body. Some things seem harder to watch than to live yourself. My mom is the best and I feel so bad about her dealing with all of it. Not just seeing it-all the caregiving, bills and travel stress. Ex dad got away with zero financial help for her or me-dumping all the future + old medical bills he refused to pay on my mom. The legal things were settled mostly in February. Never in my life have I longed to walk out in traffic like this. No one else in my life had made me feel so utterly worthless. My stomach turns thinking about how no one gets away with anything, and the weight of what waits for some. Guilt over the air I breathed. So my care/chronic sickness wouldn’t be even more of a burden to my poor mom any longer.. But thank goodness with every brain break and bad idea we by belief rise stronger.I am begging her to let my medical record bills go to collections, I have nothing of my own + disabling genetic incurable condition(s), so chances of future me ever being an Actual Adult and needing this “credit” thing are zero. [🎵my new (Taylor Swift) pseudo song is “I am never, ever, ever, going to be better!”..because if I can’t beat it, I’ll dance to the beat of it ✨🎵] Applying for SSI takes an eternity, even with a free-till-won disability lawyer. A lot of this is the fact that I’ve been disabled/chronically ill since a child + homeschooled, and never been able to live like others. Their “residual job functioning capacity” questions and tests are completely irrelevant, as I never have been able to fully function. I hope for Medicare/Medicaid approval. Exdad drops my insurance next year, and my mom, the full time tool cashier, cannot afford it. She’s calling the local ERs for financial aid applications. Duke keeps renewing my charity care/ full financial aid, though! Incredibly grateful. I don’t know how any of the grown up stuff works. If I have no money and never have, am incurably diseased, disabled, and soon to be uninsured, where do they expect to get paid from? I know the ER cannot refuse to treat anyone, even the homeless, thankfully. I have no idea why my mom is trying to pay them, they only grow. Exdad took the medical savings card access, too. His lawyer was so crooked and hers didn’t care. They tried to steal my mom’s inheritance. She barely got her inheritance childhood home, the abandoned puppy mill we were forced to flee to, then rebuild (but now SO love ❤️), leaving their marital home and life behind with him. He is trying to cause problems by not signing the divorce papers, so the restraining order may be renewed. He cannot stop the divorce, court can force it. It’s about him trying to keep his small retirement savings. He also didn’t sign the paperwork on the one old car my mom got, then canceled the insurance on it (this is the only car my mom got out of the total old 4 family cars-and this was her mom’s 19 year old mom inheritance car. And she was driving me to Duke hospital regularly in this) intentionally sabotaging us. Making it illegal to drive that car, as my mom couldn’t legally pay for insurance on a car not signed over to her. This was all happening late July as we were daily evaluating whether I should go to the ER. But driving there would be illegal-my mom had to short-drive to work with legal paperwork and hope not to get pulled over. She ultimately had to take the small sum she barely got from the divorce split up and buy a new used car, as she could buy insurance for it. We are terribly grateful, she loves it, and it’s so nice for the wheelchair, but wow. My mom is wise and would never ordinarily make such a purchase without being cautious. I shudder at the future of some evil individuals. Thank goodness we no longer live with such darkness. I have the noblest mom ever. Being safe and free makes up for possible poverty. Nothing in life is better than to be with companions worthy. Everything is far better than last year! It's only the uncertainty medically with me, along with the possibility of her adopted criminal creep brother being released from prison soon-we don’t know if he gets 4+ more years. He is not welcome here, nor may he drain my mom. She deserved so much better, and I trust the tide’s truly turning. I wish I could fix it all for her. But I can’t…so instead I’ll try to do the chores + cook for her between collapsing, and decorate inside these walls with the spirit of Fall! (Wheelchair power!!!) Creations can cheer countless clouds away. ❤️ Doctor visits were awesome last time given the battle royale removal of my medical-kidnapping-misdiagnosis! So weird to be treated like a human being with value instead of a worthless little worm. For some reason my PCP (who had blindly gone along with the sketchy GI doctor and fully blamed me) now seems to respect me since I explained/proved it and almost fired her too, haha. So strange not to be a scapegoat. I’m baffled for being believed and am almost crying with relief. Rheumatology successfully got me back to my endocrinologist for Carcinoid syndrome/NET. This time around I don’t have to consider falsely telling them I want to change genders just to get an appointment- three years ago I was desperately sick and considering this strategy. I instead got in due to my systemic nonstature stunting/being a human horseshoe crab. That appointment is at the end of March 2024. Three years since she hastily “doctor punted” my complex case to GI & rheumatology while I was telling her that did not explain my endocrine symptoms. I’m also on a new Duke GI doctor waitlist for a January 2024 appointment. Still nobody has/can reread my crimped artery abdominal ultrasound. The plan is to contact PCP if my fasting blood sugars get above a certain number consistently (they are almost there). I, at the time of writing this, have a test for POTS soon where I will be tied to a tilt table with the “different provoking measures we may use during the test- deep breathing, blowing into a tube, hand in ice water, and nitroglycerin.” *googles nitroglycerin*….😎🍿) So that’s life lately! I am constantly shocked at the adaptability of the human body! Grateful beyond belief. My cup is not half empty, nor half full, for I find it overflos. Random wildlife visits! The crow knocking on the window woke me up! And I went to grab the the web-stuck butterfly for decor but the poor thing wasn’t dead, flew away instead! Resident falcon visits a good bit. And when new carpenter Uncle Dave surprises you while you were gone on a doctor daytrip and patches your crumby pillars + leaves gifts of homegrown tomatoes at your door! Little metal cross created by my mom’s customer and generously chucked at her, now cherished in paperclip holder.
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. . What you see VS reality: That absolutely is my mom murdering weeds with her Mother’s Day Machete. Eucalyptus hanging . 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 . 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~ . 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)
Social butterfly? Not I. Awkward moth? A cut from my same cloth! Costumes, and could not for the life of me concoct a clever cinematic story, much less meet a human to model. Made do, a messy music mashup of perturbing posing, 83 minutes of recording, swapping, screenshotting, and chopping into a 52 second video, then shrinking back to the studio. My mom: “It’s too fast, my eyes!” *Contemplates incinerating more seconds off*. What's all this? It started with a sweatergift from my mom, the greatest gift ever given unto me for a birthday. Dreaming I ate three giant, gorgeous donuts and rode a bike was a close second. [Reality: 18 months of what would starve any creature with a metabolism, but instead currently uncontrollably gaining weight + an arthritic ambulatory wheelchair user. ] I will gladly goof over donut dreams. And If you dress as a donut, do not doubt, I will support the decision. ♫ They can say, they can say it all sounds crazy They can say, they can say we've lost our minds I don't care, I don't care if they call us crazy Runaway to a world that we design Every night I lie in bed The brightest colours fill my head A million dreams are keeping me awake ♫ Back to the sweaterstory! "What colors would you like? " Me: *grabs 11 skeins from glorious grandmayarn box* Her: https://www.ravelry.com/patterns/library/childs-knit-crew-neck-pullover Pattern used, combining sizes to accommodate my disproportionately long yet useful arms, designed crop length. Tis her first sweater, and it does contain tears. Even made The Child a matching one! At some point, it struck me that one does indeed need mothwings to wear with confetti sweaters, a set of two would be even better. Rummaged just enough of the right colors from the preexisting hoard, wire was the only thing left to be acquired. My moth model: Baking wing beginnings 88hrs for big wings, 25 for the minis. Gingham reinforced cotton strips, sewn at center. Machine basted once ironed in half as a tube, then hand basted with Tex 70 slick thread for neat gathers. I initially sewed my casing tragically slim and completely removed and resewed each piece after sandwiching and spacing. Turned right side out & pressed. Used grandmabasement ribbons for the wing venation. Initially planned to paint them, but this seemed less of a mess. Tracing wheel and vanishing marker for seam guides. RIP ribbon rations, so not accurate. Spontaneously strewn stripe seams, sort of "quilted" on. Since the ribbon ran dry, tacked in soft yellow yarn down each side of the Child's wingset, then machine "quilted" it. Eyespots from ribbons, brown cotton, lace and leftover leather seed scales from my pinecone quiver. Handsewn onto each side with blanket stitches, waxed embroidery floss and beads. Wing edge endpoint trimmed with 3/4" sherpa strips cut and stretched on the bias, machine sewn. Multisize bubble beads, each tied on with tan Tex 70 thread, sewing through both sides simultaneously. RIP fingertips. Wire time! Was a tad wide for the casing, crammed in over a few hours.Wrapped the exposed wirewads in 1" strips of PUL fabric and brown knit, anchoring each layer with Fabri-Tac. Tied slender strips of sherpa around the side wire areas, used 1/2 elastic for straps. Extra sherpa tassels to shield the adjustable elastic connectors (AKA safety pins.. *fancy*) Video for a feel of structure. Almost forgotten antennae! 2 hrs here. From felt leaf placemats and elastic enveloped in knit tubes. Baby's Mothstume, 9.5 hrs. Fully lined, white opaque lace overlaid with the mesh floral. Four little leg faux sleeves, lined tubes filled with fabric scraps. Handsewn goldthread sherpa neckline trimmed with knit strips. A newold backdrop holder has made things easier, a reject from a closing store. I was running string between closet doors before this, haha. Guest starring a fine friend whose origin was in a GIF, one here. Brother, browsing blogs: "Look at this thing!” *Points to the rainbow assembly of grinning gallopers in GIF bliss* Young mush, literally screaming: "IT'S A HORRIBLE RAINBOW CREEP MONSTER!!!" *lifelong bond* Sewing, a sock, paint and felt: *???* Wired up a rainb(orr)ow of circle circular knitting needles (stolen from mom) +secured some skein skypillows. Foamy 'flies still not shy. My mom found a clearanced skirt which bore uncanny resemblance to a confetti sweater. Her: “Does it actually match?" Me :"Probably not, nope! " *new favorite outfit* Cloudy with a chance of …falling dolls.? B u b b l e s Do you ever just look at chewing gum and think "an admirable anchor for props!" ? Hope not... *guilt* No human size mothstume, white one from years ago shall do. Leather quiver and headband from an eternity ago, last spring. For it feels wasteful, tools that sit idle. Hope one day an able bodied soul will use the archery thing. Sunrise, 8 am, impending equinox, ~45 degrees, barefoot, duckdock. Dear neighbors, my sanity isn’t wholly lost, please don’t call the cops! "Some day you will be old enough to start reading fairy tales again." ~C.S. Lewis .:Medical mystery mishaps:. Wheelchair waltzing at 3 am is surprisingly wonderful while wondering if bones are internally shattering. It’s been ten years, two severe with searching, blame, and begging. I research restlessly and print papers to pass to them. Wield the med message system as I find myself so often mute, memorize my own medical notes now. I’ve learned some will lie if you allow it. A recent appointment ignited a new interest in my case. Primary care explained that the specialists were stumped and medically at a dead end. I debated, I begged. Everyone cried. Got referrals. Success stings sometimes. That diagnostic procedure/surgery I had in February (SB enteroscopy) is getting repeated in a couple months by my own GI doctor. Because the surgeon imaging reports disagreed, they were out of ideas, and I sent Labcorp guides about what to do when Celiac blood work and biopsies conflict. They actually read it, which I never expected! The January surgeon saw intestinal damage, bleeding + an ulcer but duodenal biopsies were unremarkable. This February one missed the ulcer/lesion, saw no villous damage or the bleeding, and did not take the ordered repeat biopsies.Tattooed my GI tract.That was a bewildering car ride discovery from the photo pamphlet while coming out of anesthesia. I have a TATTOO? Took me over twice as long as expected to wake up from it, nearly wasn’t released due to low blood pressure. The next one will be the 5th diagnostic procedure/surgery in under a year. Endless ultrasounds, ER visits of which I’ve lost count, 3 edible nuclear stuff scans, 3 CTs, 1 PET scan. Bouncing between endocrinology, gastroenterology, neurology, rheumatology, It's dizzying. Consistently “strong positive tTG iga” discovered one year ago this week + other bad bloodwork + systemic wreck + unlikely Celiac genetic test with double negative biopsies = uncharted territory + no one knows if Alpha Gal allergy medically effects people after remission, it’s been exactly 7 years since I was bitten. THE HOSPITAL SOCK HERD IS HEIGHTENING. I learned that GI and Rheumatology are actively arguing about which specialist should see me. Outpatient orphan? GI swears it’s autoimmune, Rheumatology thinks it’s intestinal. Meanwhile they keep running Multiple Myeloma tests without telling me, I don’t know why I find this secrecy funny. I suppose I’ve no healthy fear at this point. Doctors at this hospital are so baffled that they’re sending me to their rival university’s GI hospital people and are pushing genetic referrals, but…For the first time a treatment's being tried!. I’d put aside hoping as a form of coping. And my, how exciting life is when one doesn’t expect a thing! It fits the theme of weirdness, wings, and bugs, for I am now on Malaria drugs (Hydroxychloroquine). “It's not what the world holds for you, it's what you bring to it.” ~ L.M. Montgomery Grand wishes, goodbye, must fly!