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.
- Read more...
- 6 comments
- 540 views