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Mushy the Mushroom

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  5. Mushy the Mushroom
    Just some artstuffs! 
     
    9X12 Lop ear bunny, finished last month. Acrylic, pencil and watercolor paper. I feel like the leaves look kind of odd/over-detailed....The reference photo had a bokeh background. It's so hard to decide when it's done.
     Drawing time:? Painting time 31 hours.

    A happy little pumpkin panda with bamboo. White wood fill markers and black china markers will stick to pumpkin skin (Yaygaragestuff)
    .
    That color wheel feel when an art idea materializes: And the Lego version:
    (Not an accurate color wheel.)

     
    This is a pseudo paint palette...A fraud made of foam board...taped to the face.
    I wish I had a younger sibling so I could bribe them to be in photos instead. These photos were taken using the most barbaric methods.
    Proof:

    And finally...my pathetic Plant-O-Lanterns! Inspired by @Bambi and @Aderia.
    MR. NARWHAL and cantaloupe octopus. Poor cantaloupe octopus was illuminated with a flashlight, I couldn't find another candle.
     

    I fail at carving cucumbers.
     
     
     



     
     
  7. Mushy the Mushroom

    Art, Archery, & Antiquated Attire

    By Mushy the Mushroom,


    nothing more mortifying that reading your own content
    Pencil pictures,  9x12s on watercolor paper. First try at using a mechanical pencil after basic shading and stuff with Ticonderogas . Probably a frowned upon method (?) but it bringeth this uneducated one much joy.  (Topic for the one.)   In September my mom bestowed these tapestry runners to me for fun dissection, destruction and dismemberment. Later became a laced bodice thanks to an old waterbed sheet, leather scraps and ribbon from my grandma’s basement.   Then it needed a dress as a friend. Wanted to make a more accurately fitted muslin because the one I did in [redacted,] and was exceedingly barbaric and based solely off tidbits of info found on Pinterest (cringe-inducing lack of ease reference, marked seamlines and notches.) Finally made life size measurement “maps” of meself and my peoples. 2d tracing and position marking to aid with shoulder slope, then separate charts with about twenty 3D measurements.  Thanks family, for being gracious Vitruvian volunteers. Apparently a lot of humans have mismatched  shoulder slopes.  (Thanks ER, for the recent scoliosis diagnosis. Would have been baffling without such insight. )
      Decided to draft an asymmetrical shoulder/torso pattern instead of using one shoulder pad. Did about 5” of total wearing ease for semi loose fit. First attempt at elbow darts (these are a thing?). Hand-draped sleeves for non-wrinkled cap shape, but not quite right yet (too feeble to do stuff + doing it anyway due to reckless inspiration =  a disgraceful quality of work but a very happy distraction) Expansions for shoulder mobility. Strangely, superglue seems to be the only glue or tape that will stick permanently on baking parchment paper (?). The ~elegance~ of the second test garment made with a mouse-chewed sheet and expanded with masking tape: Finished dress:  Made from 3 yards of thin upholstery fabric from art scrap store.  Balanced dart technique , 3.5x gathered skirt, fully lined (method ), invisi-zip. Prick- stitched facing was kind of a fail, didn’t intend to make an outer facing but forgot, so rolled with it. The slight sleeve cap gathers are also my mistake (Positioned them ~1” too far back).  Archery Gear: The results of my dad finding a new old bow and me remembering how fun it was to shoot the toy one.  Thus I learned about string slap the hard way... Did anyone else think that bracers were LotR fashion that had no practical use? ._.      . Bracer with handsewn leather loops because of a lack of long leather eyelets. Based roughly off Etsy listing photos, made test subjects from old jeans first.  Leather from the marvelous bin at the art scrap store.Dropped the awl in the process and the 1840s needle tip snapped and soared across the room. ._. Partially sewn with Needle Launching Monster (China Leather Shoe Patcher) Draw hand finger guard, handsewn.   Quiver. When eccentric thoughts materialize and you end up cradling arrows in a mock California Sugar Pine cone. (Based off this Reddit user’s  image. Can I link to Reddit? is that okay now? Sorry if not.) The cone scales are made from acrylic painted scraps of the leather jacket (this, my shoes and my brothers wallet all match now...Awkward? XD). Neoprene glued+ sewn on with the NLM/CLSP. Innards are thicker leather with rubber stabilizer at the top band, the end is veg tan leather. Sewn with hand cross-stiches and layered scales with glue. Sewed on a three point strap. Just made with bag sliders (Seemed more convenient than ordering the right things). (Only own two arrows currently. ) Took acetone to the decals of the arrows and removed the rubber fletch things. Followed this dude's tutorial for feather fletching except with e6000 glue instead. Used some abandoned feathers from my Muscovies.   (Looks pretty bad around the sleeves- the error of drafting a dress after the outer bodice. Fail-learning journey .) For hunting a box of pine straw and rocks.  Archery was admittedly an absurd thing to consider right now, but sometimes I’m mostly/somewhat ambulatory, so yay anyway. 'Twill be used one day.    Pants and a fake cat for my mom.  The cat head/face pattern needs some refinement next time. Little leather paws and thread whiskers. Didn’t have plush weights, used airsoft BBs instead.      The baby. Polo shirt gnome bonnet, gown from the good parts of the rat-chewed sheet.    Polo shirt attire + spoon + 99 cent tote for a boat + mom breathlessly blowing bubbles by the bank =   Both the baby and the phone nearly went overboard. *rubber boots, soaked anyway*   Did you ever make rafts as a child?    I remember getting stoked about them and my parents made my brother help with one when we were [redacted] and 10. He wasn’t fond of the experience, so switched to raftdrafting alone. I think only one was stable enough for human use. Their flimsy remains lay in the bottom of the pond to this day. XD Our dad, ever since that day: “If I’m ever gone, my daughter gets the tools, and my son gets her phone number.”  ...not sure if that’s supposed to be a bad thing or not, but sounds like a sweet deal? -Heads- Recently decapitated an elf doll to remake it. The cotton fabric I had clashed with the head, so painted it with watered down acrylics and heat set it.  My mom: What’s in the drier? Me: A body.    Removed the original face paint, was going for a more Studio Ghilbi style. The outfit is kind of rubbish, made the clothes for another doll at 14. Just decided to add new lace and made some slapdash leather boots.    I have two heads now. Not like this, or the Rebis.... ...but a foam one for hat making....   Dress form is now renamed Taun We.  Okay, done spam-bling now, sorry and salutations!
             
  8. Mushy the Mushroom
    Just a crown. Not really worth posting, definitely not in a topic, but I had a merry time with it. The back is held together with a tiny rubber band (Also one piece on the front, because it was broken).
    Should Bionicle be fashion?
    Yes.
    Should Bionicle be fashion in this manner?
    No, probably not. But that definitely did not prevent me from going totally fantasy-medieval-princess with it.
     
    Yay for tablecloth capes, letter opener daggers, that plush bear that frightens my mom, phone camera timers, a flimsy dock made exclusively for perching ducks, and laser level tripods. This is what happens when you’ve never celebrated Halloween. Any excuse for a costume will be taken. 
    Am I the only one who feels as though shutdowns are a second Renaissance?



  13. Mushy the Mushroom

    Cake, shirt, life.

    By Mushy the Mushroom,


    nothing more mortifying that reading your own content
    ..Rareactualreallifeentry..
    It has been wild lately. Medical TMI warning, I’m sorry in advance.
    But first, a of couple creations. Just a shirt and chess-cake cheesecake for my brother. Stoked that he finally was able to visit.
    The cake was really rough-looking.I made charcoal-dyed lemon butter-mint dough to cover it because I didn’t have fondant. Kind of floppy and hard to work with, and was totally last-minute. 

    Finally got to apply some newly-learned sewing techniques in the shirt. Basting tape is a marvelous thing. And stay-stitching. It’s also a lot easier to use a serger inside the french seams. The vertical buttonholes are a lot less scary to put in than traditional thread ones. (The shirt is on a female mannequin that I padded with towels. Probably looks weird, but no male mannequin at the moment.) So glad to finally have a sewing technique resource website!
    I’m still in the process of designing a full-face Bionicle mask, but I’m failing at a lot of stuff lately so it might be a while before it’s done. And now it’s holiday-gift-making rush season. So many half-finished sewing and art projects, so many things I need to take pictures of...
     
    It’s been a strange year of medical mysteries. TMI begins here, sorry in advance.
    Five total ER visits now. You know you’ve been too often when you see the same ER doctor again.
    Went two weeks ago for myoclonic hyponatremia seizures, chest pain and near syncope... the seizure, at least, caused by unexplained extreme thirst/over-hydration. That visit was pretty drama-free, just labs, x rays and EKGs.They actually didn’t catch that hyponatremia was the cause and suggested it was dehydration (...checking your own labs later is useful).
     
    Last night brought anaphylaxis/allergic reaction. Hives, throat constriction and breathing difficulty. It’s been awhile since anaphylaxis gave me a visit (I outgrew my food allergies three years ago...). My mom gave me expired Benadryl, then harpooned me with an Epipen that expired 4 years ago (It’s odd how you don’t feel the needle). None of that helped, and the home pulse-oximeter showed hypoxemia.This was the first time the Epipen hadn’t worked...So, woo, another ER visit. EKG again, an IV of steroids, an epinephrine shot....and the infamous, bright pink Benadryl IV…. Instant burning throat, coughing, a sensation of all mouth moisture sucked out, a feeling that a black hole has sucked all the strength out of your body, convulsing, losing the ability to move and speak, and being unable to feel your arms. Also, fiery hallucinations and losing consciousness(?) while hearing everything. 
    Nurse: “You just had the worst possible reaction to that.”  
    ...Benadryl is quite nefarious. Strangely, almost dying a few years ago didn’t feel nearly that weird. eek. wow.
    Glad that’s over...but the etiology of it all remains unknown. Has peanut allergy re-emerged? Or Alpha-Gal allergy? Or a random new one? I guess it’s back to sanitizing a spot in the kitchen and starting the “I can eat these five foods until I get an appointment” diet. Thankfully, this isn’t as disturbing the fourth time around. Pretty chill, really. Not boring, at least. Also, it’s cool that the IVs have bendy plastic needles, I forgot that was a thing. I’m acquiring a nice collection of electrodes and hospital bands now, haha. Sorry if anyone actually read all of this, I never imagined I’d actually post anything non-art related on here. I’ll probably deeply regret/be very mortified about posting this later, but I suppose it’s a nice way to process it all. I’ll blame it on the Prednisone blur. Thanks for making blogs free, BZP. (Also, sorry if posting about this stuff isn’t allowed, not sure if it’s okay.) Edit: apologies for typing errors. Also, ultrasounds make the spookiest, most fascinating, haunted-house-style swooshing noises...And also, time to add filler memes, because memes improve all situations. Mildly tempted to post an IV pic, but that’s likely too gory.
     


  14. Mushy the Mushroom
    Then recreated some scenes from Tangled. I didn’t have much else planned between two and five in the morning, needed purpose. Taken over six days with laser level tripod contraption and iPhone shutter remote, straining to see the thumbnail of the movie screenshot for pose reference. Then I thought  “Took extra rubbish photos, could be low quality stop motion?” (Was going to anonymize, but was convinced not to this time for the sake of the recreations. So here’s the unfiltered goofery of attempting to imitate Rapunzel’s expressions.)  Starring Shasta Alien as Pascal Chameleon.
    ~~~AcTiOn~~~
     
    https://youtu.be/4qPsmBdJAS8
    *Begs it to embed*
    (Wasted 23+hrs learning to use video apps, trashed around five versions of this, the sound is still off, but ‘twas a fun endeavor.)
    Because growing up sounds like giving up? And maybe there’s no gain in trying to refrain from twinning with an alien friend?
    Also because the story is a little similar to how my own has been?
    (Poor health and severe food allergies have been/apparently still are my form of Mother Gothel. I’ve seldom left my home for the past 9 years ( homeschool)  Aside from briefly thinking I was fully well and trying to restart life, meaning painfully shy church attendance.). But that's quite okay because with art and such I’ve filled the days (and nights)! And I have been blessed with three lovely family humans. And some pet snuggly ducklings! And this precious alien Child!).

    2013~~>present. Can't believe he's eight now and has twin sons!
    *Tangled inspired, new design*
    113.5hrs making/drafting, 30 minutes for the design plan. Made over 45 days. 
    This happened thanks to an indescribably kind lady from a local lace outlet. The factory was shutting down, they were discarding the fabric, and she sent me home with a load too heavy to carry.
    Cost of project: $0. Had the other stuff already.

    Plan/draft:

    The making process:       Petal tests, as some materials have the undesirable habit of bursting into flames instead of becoming melty. Faux flowers, because you know, why cut the flowers when they’re trying to grow? The gold ones made from kimono scraps had that obstacle, so sewing for them. The rest were from grandma #1’s basement ribbons and taffeta scraps.
    Centers are beaded knit yo-yos gathered over leather.
      The under layers: 12hr assembly petticoat featuring lace cut off of my mom’s old prom dress. Blanket Stitching and French seams on the shirt. Elastic belt with ten loops to hold the ten skirt length adjuster ties.   The finished dress and belt: First attempt at a 10 gore dress, only had done 6 gores before. Tried some couture techniques. Specifically thread tracing before cutting, which I realized was not a good idea when doing French seams. That took five hours. Hand basted (temp stitched) all the seams together, machine sewed French seams, then hand-prick stitched down every gore, sleeve and neckline. The square neckline is made of elastic casings. Then hand sewed all the ribbon skirt extender ties. The back lacing is made from tubes of lace. The lacing loops are made with steam-a-seam then hand sewn on. The belt is a patterned ribbon fused and hand sewn together with beads from grandmother #2. The sparkle beadthings on the tie are from gutted earrings. ( Inside out photos first):

     
     
     

    Crowns + necklaces: The crown body is made from ~1/4” wide barn rope with wired ribbon sewn around it. Then sewed flowers on it + the flower ribbon strands.
    Leaf necklaces using grandma #2’s beads. The cord on the human size one is actually made of braided metallic sewing thread then covered in glue, as I lacked a chain.
     
     
    The baby’s outfit: Fully lined and finished with gold hand prick stitches.The tie is made from kimono scraps and fusible web. 


      Time for the recreations! “[...] and by then it's like 7:15...” Shower curtain, tablecloth, sheet, temporarily stolen clock from my dad, oil lamp from my grandmother. “And so I'll read a book. Or maybe two or three....”

    The doll was taped to the wall, and the baby precariously attached to a shoulder strap using rubber wire. Chalk markers will not exactly come off of satin paint.... Throwback to repeatedly pencil graffitiing our hallways as a wildchild and telling my dad we could "clean it up with paint"...
    “I'll add a few new paintings to my gallery...”
     
    Just 3M taped a mirror to my paint basket and drew the designs. Baffles me as to why a paint box would have a mirror.   “[...] and knit...” Jammed a scarf made four years ago back on the needle.   “And cook [....]”   The baby was perching thanks to a rubber wire around his neck that was attached to my headband. Froze the pie and shoved it in a cake pan because the other was too wide.
    "Then after lunch it's puzzles..." Would have been more accurate with Legos. Shower curtain floors.   “[...] and baking” The baby is rubber wired to the elbow. These are fake cookies, bad biscuits, much deception. I ran out of sugar.   “[...] Ventriloquy...” Tablecloth and rubber wire. “Candle making...”

    Shower curtain, my mom’s Dutch oven on a pie cutter with battery powered flames, and that box of 72 “emergency” candles. (Thoughts during that photo: I've absolutely lost my mind. Absolutely. It's just gone. This was the sixth scene setup/photo within two hours. Costume overheating. It was 4 am. Tylenol lapse, subsequent collapse.)   “Then I'll stretch..” (Not a song accurate recreation...) Untethered perching on the side of a chair stacked on a bench, for the pose that makes no sense. At 4 am. Much safety. #world'sworstbabysitter “Maybe sketch....”
    (Also low effort, not song-accurate..)

    Foam core fraud pallete, transformed with a paper lunch bag. “[...] Sew a dress!”   Highlighters, mirror with wrapping paper and rubber wires. This is the scene that inspired this project that uncontrollably snowballed.  
    “And I'll reread the books, If I have time to spare...” Halfheartedly arranged sheets, mirror made from CDs, light from watercolor paper, handmade pillows that give the odd illusion of morphing into the dress, wax paper plant, pouf from spray painted, knitted-together tee shirts, and Dulcimer made by my dad.   “I'll paint the walls some more, I'm sure there's room somewhere....” The phone was ~2" below ceiling height, attached to the tripod that sat upon a milk crate and basket...And maybe a puzzle box. “And then I'll brush and brush, And brush and brush my hair..” Faking it. Should have put that extra doll wig on the baby. “[...]Tell that to my frying pan!” Wrinkley sheet push pinned to wall, one thrown over the closet door, mirror teetering on paint basket and milk crate for correct height, and most importantly, the iPhone edge making an unsightly reflection appearance. The baby!

    The satchel is some kind of antique camera from my grandfather. Terribly grateful about my mom’s affinity for cast iron cookware. "Crown” made from crystal lace and elastic.   "Just smell the grass! The dirt! Just like I dreamed they'd be! Just feel that summer breeze the way it's calling me [...]I could go running. And racing. And dancing. And chasing. and leaping. and bounding. Hair flying. Heart pounding!.."     Awake 23 hours~> four hours sleep~> joy over perfect sunrise light~> frolicking, joints subluxation-ing~> barefoot stepping on a pine cone~> too tired to move for three hrs~> not noticing the pine cone spikes until nine hours later~> NO REGRETS. If you can’t yet beat it, why not dance to the beat of it?   “And at last I see the light And it's like the fog has lifted” Lantern is a battery candle in an extra ikea lampshade. Just drew the designs with a gold gel pen.  Ripped the sticky-back solar string lights off of a shelf and sewed gold ribbon around them. The boat? It’s an inflatable raft covered in a fitted sheet.  Getting outdoor photos with a twisted sleep schedule is quite the adventure! I staggered off the couch at eight pm after staying up 24+ then sleeping four hrs and started fervently racing sunset. Thanks, mom, for inflating the raft and braiding the hair with zero warning! “And at last I see the light
    And it's like the sky is new” You may spot background ducks if you look closely (at least in the video). We were actually on the bank in every photo where the front of the raft isn’t visible.   “And it's warm and real and bright And the world has somehow shifted” ISFPinsanity kicked in, tossed it all in the water with the poor child clinging on for dear life. “All at once everything looks different Now that I see you”....Precious Baby Yoda, that is! Such a happy little weirdo!

    Thanks to my mom for catching the baby as I threw him to shore...And the shutter remote.  My bare feet were trudging mud, but miraculously, only the leggings got dirty. But a sizable pine cone did get temporarily lodged in the petticoat. BUT WHERE'S FLYNN?   *tears of joy* The end!  Thanks for dropping in! ~I like you, just the way you ART~            
  21. Mushy the Mushroom
    Recent chipmunk, 9X12 acrylic + pencil on watercolor paper. Drawing time: ? Painting time: 42 hours.
    The drawing was from last year and not heavily detailed (done with a flashlight during a road trip).

     
    Drawings from the past few months, 9x12s. I lacked access to a reference photo for one of them, so that accidentally resulted in a drawing of me as a mere primordial mush’. The last two are smaller, old/not very good (2018-2019, flashlight car art) ones with some newly added details.

    My dear, tolerant brother visited and confusedly agreed to be in a five minute forest photoshoot!
    Him: “I didn’t know what I was walking into. I still don’t.” 

    Lantern: Was gifted to our great grandparents by a conductor after his train derailed and partially destroyed their yard. (It works, but fire is scary so the flame is tissue paper).  Binoculars: From another grandfather. 
    Brother’s costume: Russian hat: Our grandfather apparently fancied one after spotting it in a magazine. Coat: Too big, temporarily swiped from our dad, pinned to cover the Star Wars shirt underneath. 
    Mine: Dress: Actually our great grandmother’s coat with an added belt. Cape: A tattered tablecloth secured with safety pins and a rubber band. 
    Bear: Still frightens our mom.  I regret not bringing string to make it look like it was climbing a tree.
    Merry times. Had a flowery stump funeral for a trio of poor fishies who had perished in a park, finally watched Rise of Skywalker, and maybe even put braids in his quarantine hair to prove it was possible.
    If life gives you straw flowers, why not wear them as straw hats?

     
    Noticed an abundance of teal things and decided to make an utter goof of myself by playing dress up with it all in the backyard.  

    Swashbuckling sword: My dad’s. From 1913/WW1. Apparently sword length is based on one’s height? The sheath unceremoniously dragged the ground.
    Lantern: Possibly stolen from the garden. 
    Dress: Made 3 years ago from my mom’s old bridesmaid gown + new lace. 
    Gloves: Made from velveteen some years ago.
    Cape: Really just my grandmother’s coat with the sleeves pulled outside-in. 
    Kakama: Pattern
    Random story because the content below will sound like the senseless babble that it is without it:
     
    -The Antics of Nannerpus-
    Once upon a time my brother and I saw a commercial starring a majestic Nannerpus and adored it more than we should have.
    Years later, my grandmother gifted me a massive amount of acrylic yellow felt. 
    And later my mom gave me an old tan sheet.
    My x year old brain: *IDEA*
    Nannerpus then became our homeschool mascot.
    2017: Took Nannerpus to the hospital with me, somehow got other patients to wear it. 
    2018: Discovered a compilation clip contest. Taped black plastic to the side of our house, asked my mom to shower balloons from an upper window, and a strange second of spinning Nannerpus ended up in that indie band’s video.

    2021: My dad:

    Me: ??? *Assumes it’s a random joke because it wasn’t mentioned again*
    Four days later: 
    My dad, 5:30 pm:
    “So, I need a Twinkie costume for work tomorrow (in 12 hours)...”
    "...Okay? Yeah? Sure?"
    ...Two hours later:

    (Temporarily stitched oversized additions to cover the mustache)....I’ve created a terrible monster...O_O 
    Sewing pins have always looked like baby balloons to me. 

    *Gets carried away by the concept like these cotton clouds literally did in the wind*
     
  22. Mushy the Mushroom
    Sugar Plum Poppy! Her Christmas gift. Wanted to make a camo cardigan for Pug, but he’s sometimes a fashionably disagreeable little slug. 
    6.5 hours
    Made from a shrunken thermal shirt, scraps, and serged 3x fullness skirt from grandma’s basement gingham roll. 
    Pops, being a gracious midnight-thirty model. 


    Decorating Without:
    A fireplace, a plan, energy, budget, indoor lights
    Or a tree!
    ♫Every morning, every evening
    Ain't we got fun?
    Not much money, oh, but honey
    Ain't we got fun?♫
    We’ve excluded the tree for the past few years for certain reasons, and I threw away all our Santa stuff for similar causes, but haven’t gotten around to making any proper ornament hanging boards. These are canvas paintings,with tablecloths safety-pinned on, then window screen mesh for the hooks to hang on. Then covered in outdoor net lighting because that’s what I rummaged out of the shed. 
    Decorating style:

     
     
     
    Spending New Year's, Christmas, Thanksgiving and Halloween in the hospital a few years ago taught me that you can do a lot with paper, paint and glitter. So much glitter. Bet it still haunts the crevices of that common room in its shiny glory. That was the greatest decorating experience of my life, that blessed craft tote. They dropped it off with the instructions of “This unit’s been asked to make ornaments for the lobby tree”. Only superglued the scissors together three times. Dragged a bunch of dirty magnolia cones in from a pass, dunked in glitter. Can’t believe the nurses let us go so wild with it. The whole unit got hit by a paper blizzard. Nurses FTW. Yay! Poster-board painted into a brick fireplace and paper ice sickle garland materialized then, now has evolved into this stuff. Wish I had more energy to make a snowstorm.
    Swiped this extra banana box and turned it into a 3D fireplace. Top box bricks are cut from foamy sheets, then spray painted the whole thing metallic silver. Ribbon edge & tablecloth wrap for lower box. Plug-in candlestick to illuminate the fake fire. Wanted to pry the light off the wall because ugly, but parents, so switched the bulb to a flame-type and we’re now going with the “Yep, definitely a chimney” cover story. 

    Two dogs might have been snoozing under this card table in their crates/castles. Pops’ Mega Bloks doghouse castle has somehow stayed intact with daily use for a year now. Superglue magic? 
    This might not be an ancient barn basket that one scrubbed the mold off of with dish soap. 

    Recently occurred to me that I wouldn’t have to cut new card stock icesicles each year with lamination powers. 
    Garland also could be artificial wreaths cut open and twisted together into a straight strip. 
    TV looked ugly to me so covered that up.

     
    My dad’s very-WIP train village. Always beats me to prime  (LEGO train) location. The poor engine is somewhat disassembled at the moment.
    Not sure what the story is behind this:

    Our ornaments, a finely curated collection. AKA: The Ornament Hall of Shame:
    Random toys, odd, old items we didn’t have another use for, a few creatures I’ve created over the years, and some my mom describes as “We hadn’t any ornaments and tried to make some”.
    Sent these few particularly sickly ones to the ornament hospital. I didn’t take before photos, but I promise, they did look worse than this. Translation: I don’t know what to do, spray paint and super glue? Angel was before a doll I made supposedly of my mom (sorry, mom!) out of a ping-pong ball and wooden clothespin. Green thing was a nut I found outside a hospital and for some reason, really fancied.

     
     
    My first attempt to crochet, circa long ago.. Was supposed to be a strawberry…I think...or a nightmare. Napoleon, the sweetest baby duck from the first trio, painted salt dough,. Almost-one-eyed marshmallow from ages ago, also tried knitting then. XD. Sewn snowman. Mr. Narwhal and blanketstitch bunny, from Idon'tknow. Nutcrackers also got mini-makeovers, mostly their eye designs, because they will always sort of freak me out.


     
     
    Dining room didn't escape deranged decor, either. 2020 brought the fun permanent edition of a curtainwall and string lights, year-round merry & bright. New snowmen made from an unconventional material, and lotion bottle lady, old candy lights into ornaments, no material is off-limits. Nothing is sacred.

    The new neighb-ornaments. 
    13.5 hours for four. Stiff felt, beads and blanket stitches.

    Some sewn while sipping Barium milkshake and getting injected with Gallium. PET scan. 
    The truth of what my primary patterns look like:

     + Peppermint bark brownies and gingersnaps, photo circa 4:53 am..and 40 minutes later...
     
     
    *limping and questioning if going to die of tired, but no regrets. I have good tiiiimes*
    [TOPSECRET] Plan left for delivery because:
    1: Flipped sleep.
    2: Love for people but fear of talking to them.
    3: Miracle mom agreed to do door-to-door delivery (Bonus bribe, though).


    Card making method tests.
    Ran out of time to do a painting for them, just used my pencil drawing. Printed 4x6 ones on card stock and laminated. made base-cards by gluesticking wrapping paper over card stock folds. Finally realized it would be easier to copy the inner greeting onto card stock and cut out instead of hand-writing each one. Sixteen, I think? Gold star Gliiiter. Still everywhere. Even found a piece in a loaf of cinnamon bread I’d made.

     
    Stuck it all together with double side tape, this stuff is miraculous. So fortunate to be able to use all these adhesives/tapes/supplies again without allergic reactions. It’s much easier than using one brand of not-so-great glue in everything. Imfreeeeeee!
     
    Speaking of which, I discovered it’s possible to make a Thanksgiving dinner using 4 slices of bread. I nearly cried tears of joy because it tasted like the real thing. The tiny table is a water filter stand and a cake pan.
    My mom said it was sad, I disagree, it made me incredibly happy.


     
    Wild to reflect the medical madness holiday tradition crash of the past. .. [The following content is a backlash against Hallmark movie depictions of life] I haven’t seen many relatives in almost a decade, severe peanut allergy and illness, travel wasn’t feasible. Then Alpha-gal allergy hit..or, more accurately, bit. ( https://en.wikipedia.org/wiki/Alpha-gal_allergy ) I had to prep all my own food separately from my family using under 15-20 raw ingredients that weren’t cross-processed/fertilized with mammal products. Contacted every company. Had to make my own “flour” for “bread”, out of rice I ran through a coffee grinder and baked in a separate toaster oven. And scrub all produce in baking soda to get off the wax. Dedicated no-dairy/mammal cooking utensils. Mammal meats were entirely banned from entering our house. One member of my family didn’t follow rules. Profound stress. Airborne reactions. Wearing gloves in public to avoid skin-reactions and throat constriction (Frozen’s Elsa was quite relatable!) I am so profoundly sorry for how my allergy grieved my family during these times. My heart goes out to anyone who's been in a similar situation. We skipped all holiday cooking, travel, normalcy, for those 2.5 years. I begged every day and night “Please let alpha-gal allergy go away, please don’t let me have another allergic reaction”…for about two years, before pretty much surrendering. Then one day, sweet freedom returned. Thank goodness it isn’t always permanent. What a miracle. I was able to eat and cook everything imaginable from late 2017-2020. It was a dream. Magical how losing a lot makes the “little things”, those once taken for granted, like literal gold.
     
    [I made the real Thanksgiving meal for my family, as I can cook/touch all food now (yay!) even if I cannot eat it for new reasons. Doctors have dubbed me a mystery Zebra ( https://en.wikipedia.org/wiki/Zebra_(medicine) It’s not seeming Celiac, and nothing aside from breads and bullion since August. Crazy, but I’m still here?! Three months until an opening for a more complex repeat of a failed GI procedure. And others. 1.5 years until genetics clinic. One day I hope to blog about these medical misadventures. Strange stories are stacking into a tall Google Doc. The chapters come quickly. It is funny to admit, but that worry over getting a diagnosis has vanished. No pressure to prove anything, anymore. And that’s brought an unexplainable, sweet contentment. I’m so glad, just to be here. I guess I surrender, again. A repeat of that old lesson. Oops. I am not proud of how many years I wasted by choosing fear. What a gift it is, to be alive! The present!]
     
    *Time for mom appreciation post*
    My mom wanted to figure out what her passion was. So she said she would try to knit again, this time a dishcloth. I told her I couldn’t bear to see her art used as a mere rag. So I asked her to knit multiple and I’d sew them into a Child’s cardigan. She was terrified, but she did it to please her precious grandchild. 
    Her: “You know, we just aren’t right, Sara”
    Me: I know! *grinning*
    Her diligent weave work:
    Then assembled during Macy’s Parade:

    Child’s Christmas present, now wrapped: (Hat made from extra square test piece, I just added elastic, crochet straps and a pom.)

    And then she moved onto this test hat using 50 cents-worth of experiment yarn. 
    She made it for me (appropriate Zebra colors), but Mum had to model. She made a pom scarf too, but it wasn't done during this forest frolic.

    The same pattern with "proper" product. Convinced her it should be for the bro’s Christmas, so he feels loved (like Mum!) I can’t believe he’s here this year!
    Dubbed the “Silver Tuna” Set. She used a pattern by Sheep and Stitch.

    Made her some quick tags. Leather acrylic stamped tags for official feels. Not the best stamp, but okay for now. 1.25" strips of cotton secured with Steam-a-Seam.

    Knitknitknit. 
    So beautiful when people pursue their passions. I am rejoicing over her newfound creative zeal! ;_;
    Paper Packages tied up with strings. Trying to figure out how to wrap stuff in a non-blobbly manner, I've never excelled at this. Spent too long covering this box in fabric for a cousin:

     
    This may or may not be the very top of our now-rejected-tree. Needed for styling. My brother's masks, I didn't ask...

    How to spam parents in person with doodle thank you's


    Poor Mum.
     
    https://youtu.be/Ic520e0UvR4
    [I still don’t know how to embed videos here. Sorry.]
    Wishing you a merry, goofy, or whatever-you-like little Christmas, or whatever it is you celebrate!

  24. Mushy the Mushroom

    Stopmotions, Happi-mess and Some Clarity on the Sickness!

    By Mushy the Mushroom,


    Baby Yoda, rainbows, butterflies
    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)
  25. Mushy the Mushroom
    T-Rex Train Video
    My dad has proven not to be steadfast around balloons again
    They have the peculiar habit of swooning him
    Understandably, however
    What a guilty pleasure
    ...a T-Rex as light as a feather!
    (Dad’s antique toy train, balloons attached with dental floss, a snapped dowel, a giant zip tie and tape. Metal insulation tape track toothpicked down, fishing line to drag him across the ground.)
    And the BTS mess:
    Dino Derailment Video
    Had to make a little, quick,  thank you card from some foamies.

    Presently not much to blog, WIPs going on and haven't gotten around to scanning some artstuffs. It’s August, which means the time to start the Winter presents! 
    The velveteen Dino! And his Beloved Egg. Inspired by my love . (With the Ghostly drafting test subject). Made from fabric via my grandma’s basement. Seed bead pearly-whites (teeth), weight from with a small pack of BBs I maybe stole from my dad, bead-toes, handsewn waxed embroidery floss backstitch skin details, and two button eyes with tiny punched leather irises and pupils. French knots on Beloved Egg.


    This is the most relatable meme I have ever encountered: 

    So many pairs. Turned the EGD socks (Yellow for fall risk at this hospital) into a Socktopus. Complete with Fall risk collar. And a recent wristband reef. Pattern still needs refinement, didn’t bother with a muslin/tester. Lace handsewn around the eye sockets and eyes made from buttons with fabric yo-yos sewn on them. Lower body made from white PUL, weighted with BBS also.

     
    Life: Medi-drama edition. (TMI warning, as usual.)
     
    It’s easy to get lost at hospitals. Especially university hospitals. When you learned to navigate the other university hospital but changed systems.  And when every ultrasound has been in a different wing. When you’ve been to three different buildings. And your mom is starting to panic. But thanks to transport shuttles (basically free hospital Uber) and a fire truck, an evacuation, and a news crew in the building my EGD was in, I wasn’t late!
    As they snapped my old friend, the fall-risk bracelet on my wrist, it soaked in that “I’ve not been unconscious since the PICU. They wouldn’t even use anesthesia during the wisdom tooth extraction. Did I just sign up for a lethal injection? Guess I’ll find out, haha..?.” It was more surgical than I expected. Got to borrow a lovely gown, two hairnets and a lovely gift of ye olde grip-socks. Hand IVS were a new experience, and those rooms are quite small. Then they rolled the bed thing into the surgery room with a gigantic digital clock. To my surprise, four nurses and three surgeons were present, apparently due to being on ASA III and violent past anesthesia reactions. Then they put a mouth guard over the teeth and a nose oxygen tube, then started the IV. Woke up back in the small room to my mom telling me that the doctor had told her everything looked normal, except for “Excessive stomach fluid, was suctioned with good visualization”.  How strange that looked in the photos. They said NPO (nothing by mouth) for two hours before the procedure, but I did NPO for four hours prior to be sure I didn’t mess it up. But still, a stomach flood was there. Also got a Tylenol IV and free ginger ale, the latter of which was the highlight of the day. And had the first wheelchair ride in a long time. Spent about 3-4 weeks in one of these once, and was counted as a happy weirdo for dubbing it my “Sweet Ride”.
    Biopsies found no evidence of Celiac, Mastocytosis or other damage via the samples from four-foot long scope, so I was sent for more bloodwork to rule it out genetically, and a Gastric emptying study.
    I was given a lovely meal of toasts with jam, a 4oz water and scrambled eggs laced with radioactive tracers. Radiologist: “Try not to touch the eggs since they’re radioactive, drop any of it, or get it on your clothes. Also, try to save a sip of the water to wash it off your throat”. I hadn’t eaten an actual meal in months, just bullions and electrolyte drinks. It was so delicious (despite the aftermath of nausea, dry facial rash/flushing, massive ankle edema and low heart rate) . Then they did a one-minute scan of my stomach in this thing. The ceilings in scan rooms always seem to have beautiful photo tiles of cherry blossom trees and the sky.
    Then they periodically repeated the scans over a period of four hours. ‘Twas a fun morning of hanging out with Baby Yoda (I have no shame) and drawing. And blasting “Radioactive” song piano cover in honor of the Nuclear Medicine experience. Also got to graffiti Baby Yoda on their garden rock.

    The Celiac genetic test results stated that it was a possible, but “unlikely” cause.
    And the solid gastric emptying test came back normal. 
    So another period of “just have to survive to the ‘next steps’ appointment ” began. 
    I can deal with the stabbing ER level gut pain, but when the ankles become that swollen and my heart rate drops to 47,  it’s not good. This happened when I had a serious electrolyte derangement before. Got labs on Saturday at Urgent care. But it wasn’t electrolytes or PCM. Then got a Monday EKG and labs at Primary care. Since last October, my heart has apparently grown. In light of learning this, I’d like to say that I do love you all very much.

     Primary care ignored the result, so I ended up back at Urgent care the next Saturday again with still swelling ankles, heart rate dropping to 45, and total deafness in my left ear. The same doctor and nurse were there. Heard him saying “She’s back? But I don’t know what to do!” in a concerned panic outside the door. So he referred me to Cardiology and an ENT. 
    On the Monday after, I took another trip to the ER. LLQ pain and chills that max-dose Tylenol couldn’t touch. I normally just wait it out, but hoped maybe they would figure out what was wrong. I’d sign up for dissection at this point,  if it would provide answers. That was a 7hr stay, the longest ER so far. Still no knowing or relief, but a non-intestinal cause was ruled out via ultrasound. I’ve learned it’s easier just to print out the scroll of symptoms and positive test results and hand them to doctors. They seem cool with it.
    GI Zoom visit ensued the next day (woo, made it!). I’m getting another EGD-type procedure on Monday. And it’s with new, partial anesthesia, so that should be an experience. There’s “prep” for this one. New COVID restrictions mean that my mom cannot come inside the hospital and just has to drop me off at the door. At least backpack-Baby Yoda can come. Maybe I won’t get lost, they only give the suite address and not the floor number. Weird to realize I’ve never actually done anything adult-like on my own before. I feel like I have the real-world knowledge level of Buddy the Elf. 
    And apparently liquid gastric emptying studies are more accurate, so that’s getting repeated on Tuesday since the EGD still suggests stomach paralysis. Yay for ingesting more nuclear nuggets. XD
    After all this, I get to attempt to eat 4 slices of bread/day for six weeks then eat a camera (capsule endoscopy) to formally rule out patchy Celiac damage (..and look for another thing). They had instructed me to consume only the pediatric amount of 1/2 slice bread/day for the EGD, given the symptom severity, so 4 slices should hopefully be enough to wreck the gut if it’s truly Celiac.
    ENT visit ensued a few hours later that day. Impromptu Nasoscopy. I’m scarred. The doctor was scarred. There were tears. Maybe it would have been worse without numbing cotton balls? RIP to the left-side hearing for possibly the next 3 months, apparently fluid is trapped in there due to Eustachian tube dysfunction.
    Wednesday was a phone call scheduling sprint. I have no idea how people deal with this stuff when they’re “real adults”. Thanks, Mom, for doing all the hard stuff while I try to force myself to sit upright for like an hour then crash on the couch. 
    Thursday, yesterday, the cardiologist appointment happened. They’re doing an Echocardiogram in a month, and gave me my first cell phone! A Samsung, I think? It doesn’t really do anything, though. It’s a 30-day heart monitor. It has a battery that attaches to the human sticker, and the batteries get charged and switched once a week. I’m supposed to stay within 10ft of the phone, so thankfully it clips onto stuff. There’s a button to push to report symptoms on the phone, and it’s waterproof. The company monitors it 24/7 and will call if they see something going wrong. Then you ship it all back in the box. Feels so Sci-Fi.

    Very close. Overjoyed about this, because time’s running out. I've lost 20lbs in three months. My weight’s in the 80s, I’m starving and cannot feel it, just nausea and pain, other stuff and that bizarre dry facial flushing/rash when I eat, drink or just wake up. Weird, because last September I just got so exhausted, had heart rates in the 40s, cried when I tried to lift my arms, lost my appetite but simultaneously, rapidly gained ~8lbs (Maybe fluid-weight? It was all in my face and ankles.) It stayed like that for months. Primary care didn’t believe I was unwell and unable to eat because of this (“You don’t look sick”). 
    All I presently have confirmed via med tests is: Elevated TTG Iga, blood abnormalities, the fact that I never grew like normal, joint hyper mobility, gut intussusception, sometimes delayed stomach emptying/possible gastroparesis, and cardiac enlargement/malfunctions. I’ve only had abdominal and hand imaging so far, and doctors keep implying that a brain/whole body scan should have been done, but I am unsure who would do that. GI Doctor has become my PCP, at this point.
    I’m thankful to just have proof of this stuff. I photo-documented all the visible manifestations when it began. Rashes, swelling, home vitals. 
    I’m glad, as one primary care doctor in December accused me of “anxiety and somatic complaints” and refused to give me any tests or referrals. At this point, I’d lost the ability to do normal living, go to stores, sleep, eat, and sometimes stand upright or move. She told me it was in my head, lied about test biomarkers, said it was fine to be surviving on dangerous amounts of ibuprofen, it was normal to almost die from local dental anesthesia, said it was fine that my body had never grown normally /functioned properly, and then tried to get me on mood-altering drugs. No. 
    I am thankful to say I’ve never encountered a human so intentionally..like this...before. I wish I could stand up for myself on the spot. My mom gawked in silent horror. I just sat there, frozen. I absolutely forgive you, and love you as a fellow human being. But you will never, ever see me again. For a few moments of utter frustration over this, I yearned for an incredibly foolish permanent solution to the temporary problem. How could I escape this suffering? Like a nightmare where you’re attempting to shriek but the shadows consume the sound. My dad made homemade soap once... But wait. This isn’t my life. This is not my choice. And then she would have won. And possibly crush others. It’s on. I fought and got that referral, actually from a different PCP. Yay for medical messaging systems, a way to communicate without actually having to talk. The first one was to an Endocrinologist, who ran a lab that finally, in late April, proved there was a problem. I couldn’t believe she found anything. It’s strange how relief manifests as uncontrollable sobbing sometimes. Then she sent me to GI and rheumatology. And the proof started to roll in. Now waiting for a genetics EDS appointment at the other university hospital, which might take up to a year. Life is so beautifully, chaotically unpredictable!
    ~The miracle~
    I’m on my dad’s insurance, and the deductible is massive. The company tried to deny coverage on a large number of the procedures/tests. I’m so grateful to my parents for covering all the past  bills, but honestly, we’d run out of money.
    A hospital billing dude called and requested 3k for a CT before they would do it. I nearly dropped the phone as the thought of “I have a Baby Yoda doll, a pack of gum, and a lot of passions that I’m too tired to use for monetary gain.” ran through my head. My mom was considering getting another job to pay for it, but knew it wasn’t a medically good idea to leave me home alone. She suggested applying for financial assistance at the hospital. Wrote the letter of my situation and sent it in, didn’t expect anything. 
    But they provided 100% coverage on everything, at least for three months, then I can reapply. All the bills voided. All of it. A free gift. How is that even possible? But they had mercy upon this mere mush’?!? I am eternally grateful, ever unworthy!
    I’ve turned the internet inside out researching medical DDXs and scientific studies for nine months. One thing keeps showing up, should be interesting to see if that is it, or some other wildcard. Or multiple, haha. If I almost die enough times, maybe one day I’ll figure out why.  I don’t care what it is, or if there’s a cure. I just hope to know the name of the bodily oppressor (And to be able to eat actual food again. There is going to be a major shortage of supreme pizza, watermelon and ice cream when/if this happens). Never giving up. Childish trust kicked in a long time ago. One day I will know .
    Additional spam meme because I wonder if this is ever a problem:

     

    He gives you his best smile, to bid you the finest of weekends.
    Fin!

     
     
     
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