Good Dawning, dear comrades! 

And by golly, the months melt by. 

I must so apologize for lack of coherence to reply well to such goodheartedness received here, unimaginable appreciation and thanksgiving to each of you! I owe so much to this site, the little, so-loved Lego city!

A little homelife hurricane-eye era gallery I forgot about. Started sketch March 2022. I was shedding raretears after a dead-end doctor visit while drawing it, if I’m honest.

But I lived through a lot more than I ever would have believed, thankfully! Picked up and completed this year.

 

Cards printed from my zebra drawing-I think these were thanks cards for birthday gifts? 

 

Fixatif-ing old art because eventually I find out how to do things…sometimes...

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A flooring scrap and thin cutting board travel artpad that I never anticipated using in the situations that swiftly followed. I can confirm it’s rather worn out now. 

 

I somehow had my scanner resolution so rough it’s barely discernible, but maybe it’s for the best given the story here. I decided to draw my distant aunt’s Anatolian shepherd, Tippy, as a thanks gift, as out of the ocean blue(?) she sent a gift.  Then another gift, which was very generous… and looking back this was uncanny given what wrongs were going on at home, then I was blocked on social media, though no interaction was ever exchanged, only mailed christmas cards and felt ornaments and occasional like posts from family I didn’t see. I guess I don’t have an aunt anymore, or anyone on that side?. Sadly, strangely, sorry-ingly. I guess I’m grateful to never have been allowed to attach or interact prior, the separation would hurt more? It’s an odd thing, to become aware of mourning something you never genuinely had. So nice to say “Aunt, uncle and cousins!”- Like beloved characters in a book. You hear about them, know their happenings at length, but can’t quite access their world. I liked believing it, the belonging that goes along with it. So I’ll appreciate that time of that pretend.  (PS Cannot recommend hammock-lapdesk art, poor posture choices on my part and promptly abandoned, haha. )

 

I am unsure if this was instinct, or if it was a blessing before its time. For around four years we’d stored some very filthy inherited possessions in attic totes. Platters, china, statues and odd trinkets brought back from my mom’s family home for safekeeping, in light of the place sitting in an abandoned state of disrepair half a day’s drive away. I decided it was time my mom got to enjoy them! Funny metal fluff to get off the tar.  Do you play Cinderella when you scrub stuff? Or perhaps a Bohrok? A great gear to turn the wheel of cheer!

 

🎶

Ah, those good old days when we were useful...

Suddenly those good old days are gone

Ten years we've been rusting

Needing so much more than dusting

Needing exercise, a chance to use our skills!

🎶

 

For mother’s day decor, 2022. No idea if I posted this prior!

🎶

She's our guest!

Be our guest! Be our guest! Be our guest!

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Ivory ponies, polished for bro’s home (apartment, in actuality)!

 

And statuary with dust undeniably scary. My grandmother’s whole house was once engulfed in this.

I do think there must have been some kind of inkling of impending doom driving a lot of trying to invent special, for-mom happiness. My efforts seemed to further ignite an explosion from another element, upsettingly. Right there in the lower rooms, the heirlooms sat ready as the tumultuous, unexpected trek took place.

 

When family lacks, but grandfather’s monkeybank with a snack has your back!

🎶

With your meal, with your ease

Yes, indeed, we aim to please

While the candlelight's still glowing

Let us help you, We'll keep going

🎶

Fast forward to October, as such scenes seem better in-order.

A barn box, caulked and reclaimed-painted. We found a big branch to put up my human swing here! Over the past couple years at our old house, I started swinging daily by the duckpond for some form of physical activity/fun/pain distraction because of weakness and joint pain/not being able to walk or stand much at all. 

 

 

Of course the baby couldn’t just sit on the ground here, wouldn’t be prudent! And a read-tree for dear Mum, where she may sun her silken coat, so pretty plum. 

Red shirt/dress may or may not be my Winnie the Pooh dress from when I was a human child.

Still more than just a bear, btw.

 

It was soon discovered that my swing was in fact to be Mum’s also, though.

I fast found out I couldn’t propel it anymore. I hadn’t noticed I was shallow-shuffling instead of stepping.  I was so busy pretending to be well, not able to use the wheelchair in the condition of this house, absent-mindedly on plaquenil and painpills, in knee braces because I had a home to build and clean! I was just sitting there on the swing after a few kicks and my legs sat immovable. I couldn’t get my feet off the ground or slide them into shoes all for days. That ability returned but not the full lifting of lower legs/stepping.

 

(In brackets due to medical/disease content, my apologies if disturbing, not sure if I should/how to use spoiler tags anymore)

[ Five days from swing setup, neurology did the EMG and skin punch biopsy to evaluate the pre-fleeing ambiguous disease progression numbness. Also, they noticed my toe-lifting paralysis that seemed to upset them, a progression which had escaped me.The tests involved probing the leg nerves with a zapper tool and measuring the reaction. It appeared similar to an ultrasound. Then they took two BB-sized skin biopsy samples from my leg with a hole punch. They said the results took a few weeks.

And I was prescribed Gabapentin for sleep and pain. That had the reverse effect and made me rather lobotomized, unable to feel my body and terribly sad. Also, hello hives! Very much a personal-refuser of the mind altering medications, this is the closest encounter I’ve had to one. 

The medical daytrip/appointment/procedures done late last are a blur.  Casually showing up there like a normal, civilized chronically ill human when in reality refusing to take a single day off renovation attempts with reckless inspiration. There are some things they need not know, haha

I lost count of the amount of diagnostic GI procedures I’ve had at this point, the last one was in late August and I think it must have been the 6th one in 14 months? Two full years now since the really high tTg IgA test.  I told them at the time Celiac certainly did not add up and no change was happening even with dietary omission. Two and a half years have passed in a state of extreme undernutrition due to the sickness. We have no idea how I'm still living like this. Tests, baffled doctors, more baffled doctors, ERs, other specialists, blood draws, scans, referrals, genetics waitlist, being *diagnosed with hypermobile EDS and UCTD, Retests, problems being found but still not Celiac. So thankful for Duke financial aid. The auto-released biopsy on this most recent EGD again confirmed that this wasn’t Celiac disease, so I am grateful to say I was able to stop force feeding myself 4 slices of bread a day, as it is always followed by fevers, face flushing and writhing. In January I finally had a follow up. Apparently I was correct that this is not Celiac disease, not a return of Alpha-gal or another allergy and it is actually something neurologically-related. A mystery systemic disease.  The two year-ago genetics referral at UNC hospital is now canceled because they are overfilled with Ehlers-Danlos patients and rejecting the people who were waitlisted two years ago.

My tonsils & adenoids are gone for good, thankfully no tonsil stones/infections now, however, the extremely thick mucus that causes the throat soreness did not go away as hoped.

In January I contacted neurology about the forgotten biopsy results and got diagnosed with small fiber neuropathy.  There aren't enough nerves in my legs.  Systemic autonomic dysfunction is suspected. But SFN seems more of a secondary disease, and they are not definitively sure what the root disease(s?) is. And this shouldn’t be causing bilateral foot drop. *In light of the overall progression, the diseases I was diagnosed with last year are now being reconsidered as rarer/different/more serious things than anyone thought. Not that they told me, I stalk the visit notes. Now there are tons of specialist tests coming up like cardiology, GI, rheumatology, possible ASD testing (that I personally requested because of the realization that I was weird/have some cognitive/social/learning quirks, its genetic significance, having a sibling with it, etc.) this year. 

The January 15th stroke-like neurological blood vessel paralysis emergency thing was like no other ER visit I’ve had before. The 7ish other trips in my life were acute, life threatening, temporary things. This did lasting damage and I was discharged as no one at the local or Duke hospital was sure of the cause. That day has split my existence in half. We were advised after a 3 am phonecall to drive to Duke ER for hyperswollen left foot, I collapsed paralyzed in the passenger seat on the way and local ER paramedics had to remove me and evaluate the situation there. I could hear everything, but my whole body was like a corpse and I couldn't move or speak. Awkward when your mom is signing paperwork and the doctors are like "Who is this? No idea what her name is" They CT'ed my head, and immovable hours later, I heard them saying I was discharged without diganosis, they were scared to do a spinal tap, and to follow up with Duke. I still couldn't open my eyes or move most of my body and my mom had to shovel me into a wheelchair and checkout. They forgot to evaluate my gigantic foot. We went home, I slept for a few hours then, still being very numb/semi paralyzed and swollen, we made the daytrip to Duke ER, who did imaging of the foot and dischargeded me with permission to add more OTC painkillers to my life, lidocane patches for my giant limp foot, and to follow up with my specialists as they had no idea what was wrong with me. My left foot is still bluish and swelling, and both legs go randomly limp, icy cold and blotchy on and off now. My whole body lost feeling, I cannot feel thirst, and getting in over 16 oz a day is a painful and rare accomplishment. Eating has been reduced to a few small bites daily to try to keep myself alive somehow. Sleep is in random couple hour intervals, which makes it surprising when I hear what day of the week it is. I am so glad the total paraylisis wasn't permanent-I cannot imagine having paralyzed hands or eyes. Take the legs, take the feet, they can't create, just not the hands please, haha!

The spine involvement is new, I had to unexpectedly see neurology again a couple weeks ago for it.  They forgot about weighing me prior, as a (non-paraylzed/short-distance ambulatory) wheelchair user and did not realize how bad this was getting. Instead of unexplainably maintaining and frequently gaining weight, I’m losing again-20lbs down from one year ago when I was already at the edge of underweight-all in the past few months. Not ideal when eating and drinking cause extreme illness and idiopathic anaphylaxis that worsens with epinephrine. So this trip thankfully led to getting me new genetics referrals to different clinics and a neuromuscular doctor. Guessing this is good because the autumn ENT doctor was concerned about ALS due to the throat strings and neurological abnormality. At the time I was happily unaware of what that disease was. So now is the time to “survive to the next appointment, hopefully” and spend the days/nights creating things, as always. Abundant audiobooks, and comforting and cheery Christmas music. Sometimes I feel a little like how the orchestra band kept playing on the night of the Titanic, but then I remember an encouraging ex-doctor patient in a power chair at Duke whose diagnostic path of Myasthenia Gravis took ten years. I’ve only been a full time lab rat for the past two and a half, ambiguous sick/disabled (without much early investigation) for over half my life now. In late 2019 when I began crashing again, I was crazed for a cure. Those prior two years post-PICU of trying to be normal and healthy and getting to eat all the fabulous foods was such a treat! I ponder how it must feel to possess a prognosis, or the power to plan. If I merely live to get an answer, I would feel rich.  And I will proudly proclaim that a major life goal of mine is eating, hahaha. I do so wish my mom had a family- It's just my faraway bro and I...and, unfortunately that one past-many-years-incarcerated uncle who we hope won't get out of prison this fall...y i k e s. She's had to deal with all my medical drama alone...  But life is still lovely, there are little things of beauty in all if you look close enough. I do think happiness is an inside job. ]

 

 

Some small efforts put forth in order to retrain my art amnesia-brain! Done in December 2022 to a cozy comfort audiobook and Cladrite radio. I do adore pretend time traveling and brain roleplaying, such fun to be a magazine illustration fine artist in the 1930s-1950s when the fancy strikes. Painting these, in truth, felt as an internal battle because of the practical-or-nothing-at-all predicament that 2022 sent.  Painting seemed..improper so soon after, almost pointless-but thank goodness for the motivation of doing it for someone else. Maybe that’s the secret joy in doing any and every thing? Who is it done for, and the love behind it? Tis for me, that feels like truly living.  

Mini scenes, 3x3”  cardboard canvases. Sneak peak of barnchair, woven with care. 

First try on this, had the canvas squares sitting idly for years. My grandmother’s generous gifts of art supplies live on. 

Pencil sketch covered in acrylic paint and gloss glazing medium. 

I “should” probably watermark some of these, but oh well. And maybe blur my signature but eh, doesn't really matter. Going to blissfully believe in the morality of humankind instead, I haven’t the energy to worry.

 

Low res-resized  version of scan, it appears.

 

Painting times:

Baby: 6.5 hrs 

Girl: 13 hrs

Deer: 6.5 hrs

Reindeer (if I recollect correctly)?: 7.5 hrs

Chipmunk: 7 hrs

Birdy: 7 hrs

 

For my mom’s Christmas gift. I credit her completely with forming my art obsession, I wonder if she knows that…I’m afraid I never thanked her prior, oh my. All those splendid art history books and children's drawing books, that dearest impressionism book of unrivaled beauty and dashing colors, the craft-centric homeschool curriculums that danced across my child kingdom- all at the kitchen table in that sacred morning sun. She covered its wallpapered wild ivy walls with my paint splattered scrolls and sketched scrawls. Something odd began happening recently, in light of meeting a few individuals for art transfer. They wondered when I started drawing.. I felt a fool because it never consciously occurred to me that people ever stopped drawing. All children I’ve seen are creators. Maybe artists don’t grow up? Hope they don’t have to, I’m quite afraid of such heights. 

 

So soon, If all is well, I can freely photodocument and publish my professionless-and proper-product-less projects that paperwork presently prohibits!I am glad to further discover how the less one has, the more unconventional uses for other objects appear. ‘Till then: Drawings! 

Gratitude echoes over my very being over the luxury of getting to do art again.

 

Lapdesk Land doodles. Some of these were unrequested ones for BZPers, and other random victims of my art endeavours, so I feel odd/guilty about posting them.... My apologies if unacceptable… Please let me know if any would want them taken down and I shall gladly do so! 

Graphite sights:

Anatolian puppy, one of the first tiny attempts to remember how to draw. (September)

 

12hrs, 8x10 as I actually began googling standard art sizes.  My brother’s Japan research trip. How was that half a decade ago? (September/October?)

 

Car art of a family photo for my mom. Started in September when summoned to show up for a scary Social Security “prove you are sick, please” interrogation because of the new need of insurance and never having had income. I never noticed I was considered disabled until recent years. My mom never made me feel like I was, being homeschooled since forever helped this, I guess! Standard small photograph size, whatever that is.  

Public domain peoples! 8x10”, 8hrs.

 

A memorial of a Facebook church acquaintance’s pet, pit bull Boo Boo. 8x10”

 

Anatolian, another attempt! 10hrs? 8x10”.

 

We found this poster on our front door once getting back from the ERs on January 15th. Impressive determination considering our yard is gated and farm-fenced! 

I collapsed on the couch treasuring this task. 

 

The dog owner did find their furry friend again! And introduced us to a local children’s charity runner friend. It was initially started by her rare-disease daughter. So I tried to draw her, 13hrs, 8x10”.

 

Then it occurred to me I knew of one other similar children’s cancer charity, so drew the girl who founded that one, for fun. 17.5hrs, 8x10”

Shoutout to my mom’s art delivery services! 

And a bit of a rough one as my accuracy and speed is absolutely unpredictable and pain-dependent. 8x10”, 16hrs. Quadriplegia violinist from IG, I need to muster the brain power to ask about mailing this one. 

(Property of BZPers below) 

8x10” , 8.5 hrs 

6x8”, 5.5 hrs

9x7” , 13.5 hrs

8x6”, 13.5hrs.

Trying to improve at people's portraits, proportions I do struggle with. My method is to do a light sketch focusing on the angles, then going back over that, erasing and mechanical pencil detailing down from the upper left side so I don’t smudge it. Then fixatif spraying and cutting to-size. I seriously need to thank the pastor who supplied this orphaned tilting lapdesk from their church gym, the hours of joy and purpose it has provided are inexpressible.  

Moving back to one’s hometown is funny. The one family I was fortunate enough to call my (only) childhood friends is still around. 

Drawn for her mom while she was gone on a missionary trip. 8x10”, 20hrs.

 

My mom adores old-fashioned paper calendars (only the finest ones from Dollar General, haha), and I’m quite fond of their picturesque vignettes. I fell for this feathered friend and had to fashion an embroidery lookalike. Plumped it up a little. It’s a pleasure to stitch rainbow plumage and other colorful crafts in between the graphite-gray sketching. Keeps the immobile insomnia hours vibrant events. 38 hrs total, framed it (Yay for spray paint and barn-find frame) instead of making it a pillow. Initially for my mom’s Christmas gift, but upcoming mother’s day makes more sense for her new-old home’s wall art needs. An uncanny color match to my grandmother’s lamp.

 

It fit in our scanner! Wrapped and sticky leather taped it onto heavy cardboard. 

 

Craft collection! Truth be told, I’m torn on what to post, project-wise. I want to wait on posting the home decor stuff as it makes more sense to show it with the whole room, so we wait. 

My mom loves heartleaf philodendron plants. Historically her houseplants ended up getting suspiciously knocked off the surfaces where they sat, and she gave up. With funds for foliage now as the only barrier, I decided a few pseudo plants would make the shelves merrier. For Valentine’s day, since they are conveniently heart-leaves 

I didn't have the proper supplies or a way to get them, so the base was a wood-cutting ripped old shirt I’d remade from an old shirt. Used a similar method as last year: fusing two cotton layers together with spray adhesive, ironing and cutting out. 

Sewed leaf creases down each one and smothered them in glazing medium for stiffness. Cut around the edges again for a smooth finish.  Scalp massager (???) and pipe cleaner base. Tied on with green yarn. Ginormous cardboard tubes, old shoe foam and laces, and upholstery swatches for “planters”. The superglue I used to attach the fabric to the cardboard started smoking when I pressed it together. No spontaneous combustion has occurred so far. 

 Definitely not one of my greatest creations, but passable from a distance. 

*real ladybug lounging on leaf*

 

And gratitude greetings from owl arts, little laminated prints.. Recycled partially from gift bags. Going to pretend that the printer ink wasn’t too red on some, and this was intentional. 

 

Scrunchies for my mom. 

Octo-O’s, balloons windblown, done into donut bundles because why not?

 

And assembled the pants  for my mom I’d cut out in the basement last year and abandoned. Maybe these will be for a Christmas gift, stashed and waiting for now.

 

Basic bakes and birthday bakebox gifts. Butter, beautiful butter! 

 

In other news, I’ve just last week figured out how to organize the kitchen to be much more wheelchair accessible! It's worlds less exhausting with appliances on lower surfaces and a folding card table for a low countertop. Figuring out wheelchair life is new in itself. I started using part-time at the former home in January 2022 as the mobility/pain/weakness issues worsened. That house wasn’t very easy to drive it in, with the rooms being much smaller and closer. Once we were given no choice but to leave in May, so began the season of painful staggering. This new-old home is perfect for rolling with all its hallway loops and long rooms now! I love it here, endearingly old and unusual. 

 

Handkerchief head scarf bandanas for my mom’s coworker, as she kindly sent one to me as the color wasn’t her preferred.

 

I think that wraps up the majority of neglected knick-knacks and novelties and my endlessly talking about my mom being awesome, haha. Looks like I’ll be making a collection of current yellow-thing-projecting for next time. 

 

My mom made my whole life with a birthday gift of this baby. One with feet, what a treat!

Wishing everyone a happy week! 

Also, I've patched this thing together in Google Docs again and haven't a grasp of if the images upload too largely as a result, apologies and will try to remedy if so!

Or if my brain can form sensible entries anymore 🙈