Okay, October Oldish Occasions!  Wow! What an existence this beautiful spiral of life is. I guess this is a hello, life update and hopeful return to this lovely internet homey. Trying to see if easier for me to upload embed IG content instead of resizing.  Which made me weirdly more okay with being more goofy on IG posting with main goal of it being for BZP blogging and likely only seen by around 3 humans, haha. 

October art first, blobbyblogbog below it!

The doll obsession did indeed overtake my October!

 

WELL FAIL

on me figuring out embedding.

So Ugly links..

So sorry.

Does anyone know how?

to please help?

if it's possible?

Me as a tree baby. I was eating the dirt from the rosemary tree planter!? And absolutely enjoying it! Baby Me cravings. Sneaking it repeatedly. Guessing that was a missed nutritional deficiency given my genetic glory. 8.5hrs. Small photo size, mechanical pencil, art fixative, watercolor paper. Done on clipboard while battling my broken body. 🤒🫠 Little gift for my mom. 💚

First attempt at hammering/murdering 😭 flowers for dyed fabric, not yet sure what to do with this, but, yay Pinterest! I staggered outside waaay back in September to get these, thus shattering me. 😆 I haven’t been outside since aside from in and out for a few car rides. (Edit: now going to make flag decor for the dining room/my new little- soon-to-show-cooknook for this!)

did I already post this here, haha?

Culinary crafts! Older content. Spice crumb cake in my misfit sized cake pan stack. Chocolate chip coconut oil muffs with walnut & choc on top. Spice and sweet potato sweet squares, walnut chocolate pastry pods + brekkie granola rounds. Cheddar cheese petite pizzas, I was thrilled to figure out they fit in coffee cans for freezer storage. Olives feel luxurious. Light and fluffy butter loaves (actually oil because $) that were altered from a Texas Roadhouse roll recipe and this a bit stubby. Horizontal slicing to the rescue & flash frozen on trays as always. Grateful to have grabbed our four lovely loaf pans when we left. Oven Naan breads, a fan of the King’s (KAF brand) recipes I am!

Random barely conscious to be honest foodprep and bakes for my mom’s meals. Also, a few “flops”-attempts at making recipes my body didn’t reject absolutely. Some were yum but not very pretty! I Apologize for your eyes. 🙈 Bakes on the treat trolley for fieldwork and fire starting family friends. Choc walnut for my mom, made sugarsub/free cheesecake for broken pancreas me! Peanut butter frosted nutter bars + gingersnap brownies for my mom. Weird colorful vegetable dishes everywhere because trying to for-dr document the diet and hopefully figure out what things are helping/making me more sick after years of starving and medical complexity. Figuring out wheelchair cooking wasn’t somthing I expected to be so complex. (This was prior to the past few months of my major kitchen rearranging. The goal was to make it wheelchair accessible with the free barn and basement supplies I could find amid major illness stupor/cooking, eating, then trying to survive symptoms afterwards.😂) *THE MOST IMPORTANT CONTENT HERE: Pic with my adorable tiny baby Alice-in-wonderland“dessert” spoon from the new set my mom ordered upon my dream request. She’s the best ❤️

When your mom’s work gently demands a family photo and you initially are repelled, then realize it’s a great opportunity for family photos… AKA to let your happy weirdo show (?girl autism? Some day…we shall officially know!?)Life’s too short and sweet for taking oneself too seriously, according to me at least! …Sorry Mom and thanks for going along. 😆🌻 Featuring my mom’s green grandchildren, and all the normalness of our existence. Doll clothes, some of the human clothes, and wreaths concocted by me. Bee costume for another doll longago, yellow bloom circa 2021. Foam sheet Sunshine sign for pretending this thing was by design. I think these were in September or October, my brain is a bit of a shell from being this unwell. Regretting not going fully faceless on these because I prefer hiding behind my alien children 💚😂.

 

(Wrote it bit ago/old info, but actually wore this for the 3rd total time today for a dr apt!) Wish I’d gone faceless- oh well, still surviving and smiling is a celebration!? Saltwater Taffy Striped Sweater! Which prompted plush phamily photos, of course! 😆 💕My mom’s weave work! Indescribable gratitude💕She just finished it, started the knit in spring 2022 for me! Shocking it fits, I’ve lost 30lbs since due to severe sickness. (Hoping such photos won’t highlight my facial skinniness🫣. if I’m honest I was fighting my own body for 4hrs on the floor after food ingestion on the day I photographed this. Typically it’s only a daily two hour post meal mess, now thankfully (desperate experimentation with my already owned Medication ). Trusting there is some higher purpose to this) Skirts and rose headband made by me prior, fur vest was a gift, glasses are just blue shades. Ballet shoes from a brief period of life when I was pre-diagnosed and tried excitedly to live, walk and move normally. Great for wheelchair use since not much need for sturdy shoes 😂. Shasta (boy baby Yoda)’s jacket selfdrafted & made by me for 18” dolls long ago, his deer sweater knit by my mom for another plush, and his tiny pseudo hat a random crochet by me. His corduroy shirt is actually a little sack bag, a gift from my mom’s coworker! Luna (girl baby Yoda)’s ballet inspired outfit is more 18” outfit stuff I made long ago. Grateful for unexpected fit!Mum (more than just a bear)’s styling my babyhood burgundy #winniethepooh dress, my childhood necklace + turtle bracelet + a ballet “bun cover” bought longago but taken for doll hats instead. Mum’s cape is actually a ballet skirt by me. #Toadstool stool a repaint by me. My new pink room has made me incredibly happy..even if I barely go up there due to being an ambulatory user of my wheelchair! PS I really wanted to make red dino & fancy ballerina costumes for my children to go with this, but don’t want to waste my tiny bit of energy on stuff for me. Update; Have worn outfit 1 total times when flung from my fungi forest for physical sig’ needs for social security. Hard to justify the “fancy” of it when 1 messy and forgetful homehobbit!

Candy corn caricatures of my mom and I from the glory of random craft trash, discount Go Grocery Avocado hot sauce bottles,their random black bags as a backdrop, and electric tape eyes. Salt lamp gift from family friends 🧡 The heights are accurate when I’m wheeling, haha.

My magnificent mom went along with morning-baked cookie delivery for friends and family. I tried to ride along for delivery, an almost unheard of thing for me to leave the mushroom kingdom at all , but nobody was home and I physically crashed too soon. My mom made the many treat taxi trips the next noon for me, for I can never repay she!

@SPIRIT!!! May I tag to thank you overexcitedly with many virtual dance-a-happy? If not wanting to be involved in my weirdness I'll remove this! Thank you again for your genius! Every few-and-far-between human who enters the home sees it first thing and happiness it brings! EDIT:added the most important pic with their paper thank u sign sorry it’s shadowy/sunny bleached a bit hahaha

 

The Woodermelon! Brilliantly named by a kind internet citizen upon viewing the original nameless creation. Many thanks to them and I must soon share with them. It has a baby now too thanks to more tree cutting, haha! My mom also finally finished putting buttons on the back of Baby Yoda’s sweater she made also two years ago! 

 

 

Already posted on BZP but oh well, IG transfers! Small kitten of a forum friend! Thanks for allowing sharing! 5x7 from July 2023. I have lost so much memory so my own art is now surprising me, haha. 17hrs- was very slow and distracted this time and am so sorry for its resulting scratchiness! Honoring noble Bob. Pencil, mechanical pencil, and art fixative spray.

 

Apologies if unwated tagging here-can remove happily if any of ye request!

Shoutout to BZP bro @Bambifor remembering BZP birthday best wishes while I was barely alive! Thanks again! Coda (Anatolian Shepherd) 8x10” finished in September. 17.5hrs (mid medical episode art so snailstyle 😂). Pencil, mech’ pencil on watercolor paper. Thanks bunches to @otterfor allowing sharing (and for not minding lack of permission to pencil the pretty pet!).

(I am trying very hard to remember which of these drawings I’ve already posted, so sorry I’m repeat posting from the edit-illnes-rabbit hole haha. Also for accidental screenshot in swipes. 🙈) “Graphite bites!” Things from my mind while fighting body for dear life -because clipboard power haha (and questioning my power to finish anything in such hours) 3x3 watercolor + mechanical pencil drawing. 5hrs. Birthday (fancy pilot?) cat for my bro shipped off in a before-made birthday bonsai box with sausage and squiddies because why not! ❤️ Cannot for the life of me keep up with where he’s living, so shoutout to him for tolerating 20 accidental sends of a creepy questioning GIF. 😂

“Graphite bites!” Bunny Snow for Mom! 3x3 watercolor + mechanical pencil drawing. 5.5 hrs. Accidentally was eaten by a origami paper and paint-chip turkey for a tiny thanksgiving gift! And finally an opportunity a pop a petite present out too, a prior made Birdy ornament inspired by her on thanks-day morn ❤️And just of me trying to wrap stuff from the trunk of thingies I collect randomly amid struggling at self propelling on a weak wheel day. 😂

 

Sorting content in an attempt to awaken from the amnesia of the past six month sick-stupor. Today is a good day, the best since another ER trip a few weeks ago (I have officially lost count of the ER trips I’ve made for new changing different issues over my life haha..and keep all my medical bracelets in a garland chain because in all things there can be beauty 😂)I give thanks {..} and send sunshine your way, sorry for spamming and thanks for tolerating me all 3 of you here. 😂❤️Big little things that made bleak days blessings back in fall ❤️ Our new aunt Jane’s kindness is too vast to explain. Bedding! Girl bedding, that unplanned matched my new room perfectly like all my childhood magazine dreams! (Hi from Mr. Mooseykins..yes that’s what I named him 😂) And her sweet seasonal sewing send overs. And a lilac rose from family friends certainly delighted my alien children! I have a problem with turning everything into hats, but perhaps there’s no harm in that? Oh, and my new NON-prescription mobility aid from mom’s store for when I journey to the top of the stairs on occasions rare! Tiny lantern to avoid insomniac wheelchair crashes haha. And my dream -doll size spoons that I daily use (?autism thing?)! Thanks to mom supporting splendid strangeness of my highly specific dream request. And ER fun in October. Those bed poles will forever be lowly worm.

So missed it here since a lifetime ago in September!

When somehow my everyday existence became a blur as I survived full blown falling into a rabbit hole without medical care (yet tons of prestigious doctors at Duke-who abandoned my case, ignored every near death plea for advice, said go to an ER-where the Mission hospital ER would discharge me, EDIT FEB 20 I just Google that place and found this hahaha (:https://wlos.com/news/local/mission-hospital-ncdhhs-report-details-patient-deaths-injuries-delays-care-asheville-health-centers-medicare-medicaid-immediate-jeopardy) still paralyzed and look at my limp body like I was lazy/wasting their resources and send a 7,000 bill that my cashier mom would try to pay ) and tried to retain consciousness in ER situations on a daily basis. Looking back at these months, it’s a miracle I’m alive. And my mom hasn’t absolutely lost her mind witnessing this. To be honest, I didn’t think I’d make it to 2024, I don’t think anyone did. I basically had accepted after the Jan 15 2023 stroke that I was unofficially on Hospice stuck on our couch and trying to make the best of it. In July I was tired of this, years of starving yet surviving due to my complex sickness. I decided to eat. Instead of controlling my symptoms by starving and waiting on Dulke diagnostic aid. I underestimated how severe the results of this would be, and am pretty amazed by the years of function prior achieved by miserable starving to control my diseases.  

Not that getting in like 400-600 calories a day was much more than starving. Along with the daily 4hrs of fluid loss, writhing, hyperglycemia and that stranded me in a certain room that began to feel like a prison cell exactly 1hr after I dared bite into some delicious broth, vegetables, meat-or anything. 

I was chugging two 2 liter bottles of electrolytes within an hour on the floor writhing…while my glucose was over 200 on no carbs while the fluid loss, LUQ pain, face flushing, etc raged. Every single day. An hour after eating, precisely-waiting to pounce on me. Clipboard art and crafts to cope while turning on The Frey Life videos on a shattered phone via YT. Wondering how other people live. Realizing how horrifying my own quality of life has been for years. Hoping to gain some insight on how human beings in a safe home life/environment on a daily basis live. What it even means to have a family support system. 

There is a lot I don’t remember. There was a lot of lying on the floor, feeling possessed by some raging pain monster. Lots of being so weak I was barely managing to propel my wheelchair home alone. But not like anyone was there to help-my mom had to work or we’d both starve without having any social/family/medical support aid.

 

In like, September, on a week so weak I was wondering if it was my last,  I rolled to the med drawer and grabbed my discontinued use Plaquenil for my UCTD, Undifferentiated connective tissue disease. 

I started taking x4 the dose, 800mg. Have you ever been desperate to live? The daily GI fluid loss was cut to 2hrs daily instead of 4. My glucose wasn’t as bad. I told my good Duke rheumatologist and since then I've been prescribed 400 mg daily. The few  pubmed articles  I glanced at later support my positive experience with trying this- if I do have some form of endocrinology/cancer disease. 

 

The horrors persisted, but more manageably. In October I got very excited and blasted Christmas music, decided to undertake doing a “real Christmas” this year in our new 101yr old family home! Because 2023 was the year of “home/life setup/seasonal decor totes/wow, normal moms have these things but mine never could”. So I started planning the holiday decor designs and working away on turning our old ornaments and junk in our Christmas trunk into things matching and new. I did a lot of ornament painting via the bathroom floor, (I have zero personal pride at admitting this, it kept me alive in such hours while unable to get ongoing medical care). . 

My mom was trying to get me applied for Medicaid whilst the free-till won disability/SSI lawyer was still trying to prove I was incapable of surviving myself and needed SSI probably forever given Ehlers Danlos alone. My mom first applied me in mid 2022. My insurance ran out in January 2024 and my mom likely couldn’t afford to add me on hers at work. So we waited. I’ve been on Duke full financial aid for years, but also parent insurance deductible payment stuff and ER bills on them/now just Mom.

 

Mom-She finally got legally divorced in October ‘23, so grateful. What a wreck.  Exdad still won’t sign over the retirement bit, or her mom’s inheritance car to her so it’s a nice lawn ornament, haha. The car on which he canceled the insurance on in late July-stopping us from driving legally, forcing her to buy a new old car,  stopping my mom from renewing its insurance it not having the title of it,  & stopping getting med help for me for the new daily ER fluid loss emergency. He didn’t know this stranded me into a life threatening crisis. He didn’t/doesn’t know this. I shudder at the scales of justice, so thankful to have survived it. So strange to me that someone like him would be sent a disabled child-He so often cruelly said to people “Did your parents have any kids who survived to adulthood? Bet they regret that!”...I have somehow, thankfully been one such personage surviving so far to this age, in spite of every arrow aimed at me. And found out in such situations there are endless ways to be personally happy-It’s an inside job! . I’m not even surprised any of this was done. Weird how you can see so much sadness it becomes easy not to even react.Anyway, sorry, hope it doesn’t sound angry- I’m not,  just the unfortunate events in a chronologically current recording.

Takin' a drive, I was an ideal

Looked so alive, turns out I'm not real

Just something you paid for

What was I made for?

 Some day those legal papers will come, perhaps, but tisn’t exactly pressing. Each time anything moved on the legal stuff it was a backwards breakdown stress spiral for my mom. I am grateful to say these horrors are now over, and things are much better!  Now we can happily go on living, as if certain people in life don’t exist, without being every sec’ reminded of it, each conversation being about it,  and go on enjoying that things are at last settled, safe and right. (EDIT: MID FEB ‘24: Car paperwork at last acquired, mom sold the sabotaged lawn ornament at last! Insurmountable gratitude!)

Medically, nothing was changing except one day I got super hungry, ate a lot of walnuts instead of the just like 500 cal daily meal that nearly killed me. My throat closed and the extra bad face flushing again. The Epi-triggered and resistant “anaphylaxis” again. The whole suspect Carcinoid Crisis again. Since 2020 that ugly thing. ER at Mission hospital, 6 am. Oct 16th. I made medical info cards a week prior because I’m tired of trying to explain my diagnoses. This thing is effective (RIP privacy when sickness shreds the remaining “dignity”. I now have 3 laminated and take to appts. the dysautonomia diagnosis new since September tilt table test. ). . I told my mom to ask for Octreotide. My mom mistakenly thought my allergist had suggested this, told them so . He did not. This was my own research. I could barely breathe much less tell them this. They gave octreotide and my airways opened up. I went home. Allergist appt to rerun allergen labs to be sure, like 1 lab order from my annoyed primary care doctor for the fluid loss. Still not allergy or high Tryptase.

So my good allergist (guy who found my tick bite Alpha Gal allergy saving my life so long ago), was like “yeah, still looks like carcinoid/a net tumor, especially given this, smart move on the Octreotide!” haha.  So I contacted him later and my good rheumatologist for Duke and UNC GI cancer and new repeat endocrinology referrals for carcinoid/NET tumor/Possible diabetic condition. And UNC approved my mom’s full financial aid application for me! So since I’ve waiting on those to get scheduled some day, a new GI doctor appt at Duke in April (I had to fire the one Duke  GI lady who left me to pretty much die after years of telling me it was surely Celiac disease and “just one more EGD, enteroscopy, etc”.) 

I still had a useless Duke primary care dr 3hrs away, but we were unsure who to use here given the digital Mychart records needing to be accessible and making sure Medicaid would cover if I was approved. So I waited. 

My high glucose raged during all this, I’d eat carrots or peas and it would go over 180. Tiny amounts of carbs sending me over 220 and half conscious symptomatically. I tried so many different foods, tried breaking it into two tiny meals to see if the GI got less angry, but nothing. So broth, protein, vegetables, and stevia seasoning became the mainstays while the glucose, face flushing, hyper thirsty, and GI episodes continued to rage on starving level calories. (Like 600 calories daily, robbed of yummy things). Meanwhile my frightening since-September 80-82lb weight just maintained. I’m 5’4”. Prisoner of war aesthetic going on there. Oh well. Alive!

Thanksgiving!a brief bit about it, i’ll blog content beyond October later, just a general update trying to grasp the spiral of this! I’d barely finished most of the decorations for the day , got to wear the vintage granny clothes I adore from my new 80+ yr old mom’s aunt (weirdness of mom being adopted) and it was wonderful with my mom off-day. We watched livestreams from ActionKid of the Macy’s Parade while eating POPCORN in our new popper & putting up the new upcycled decor by me (later to be blogged). We had such good times. One of the best thanksgivings I remember. Actively FB messenger spamming my brother. Every holiday prior was just the 4 of us and major medically-dietarily restricted/we just didn’t do anything.  Also, prior, my ex dad hated the traditions, seeing his family at holidays, birthdays etc.  and my mom had none aside from her peculiar puppy mill owner estranged mother and prison brother. 

So getting to celebrate “real family holidays”  in a gloriously nontoxic home environment is not something we’ve really experienced (except for my mom, as a child) before. It was a dream. I finally don’t feel unsafe 24/7! Near heaven! The 2022 thanksgiving prior I tried to pull out our old Xmas decorations but just cried instead over the shambles of our lives. 2023 thanksgiving was a DREAM. We are actually very much recovering and learning to live. If we’re all still around next year, I think it may be ever better! 

I decided to make a traditional thanksgiving dinner, immediately freezing some dishes for Christmas. Decided to eat tons of whatever and everything I wanted that day, even if I went into a coma. That went SO badly hahaha. I took extra plaquenil. No regrets. Totally threw up. Eating is torture but so worth it.Would do again. I felt so alive, it’s so nice to eat with other people. I had no idea how poor not being able to eat together makes the  “quality of life”. Wrote a disturbing song in the stupor that followed that I’ll later repost, hahaha.

And then after that Twas all out Xmas mode-still…Making some rushed decor, decorating the new old hold for the first time, trying to color theme each room!, lots and lots of cooking and baking! Pinterest recipe bliss! Planning excitedly for my brother to visit after not being able to for a year. The first time the home wasn’t even fully renovated and we didn’t do much of anything, decor or food wise. This meant unplanned renovations and rearranging of the kitchen to be more disabled/wheelchair friendly to reduce my suffering,haha. 

The “Cook Nook” was evolving- my cozy cottage closet wheelchair workspace! Such kitchen shuffling. Still a work in progress. (EDIT FEB ‘24..Done!)My mom getting me an instant pot has massively helped me given my inability historically and now especially to stand long at the stovetop. Need to take updated pics and add to this.  Also, I am relearning how to cook via food scale using mostly metric, for ease, fewer dishes, and nutrition calculations. Thanks to King Arthur Flour recipes for encouraging this. I am relearning how to calculate the servings/nutrition on my own recipes and all recipes once again (one day I won’t have to Google nutrition on 3oz raw “x” every time). I did this from 2017-2020 (post severe food allergies + ingredient label checking drama, PICU, hospital) as per my illness and appetite never existed,  and I was scared I’d accidentally lose weight and almost die again. Then in 2020 I just became major sicker, unable to eat enough for a normal creature to live, started gaining weight, then the celiac train wreck began. So all this nutrition content stuff is major Deja Vu. 

Sometime in December? We found out I got approved for Medicaid , and now it appears to be because the US government has officially accepted that I am disabled/useless in working society. I am so grateful and honestly cannot believe it. It seems like I may not have to show up in virtual SSI court in March now for the disability lawyer to “prove I’m disabled” from showing my medical records that the government already has. (EDIT FEB ‘24: Virtual court date is a day after my b-day, perhaps I can control symptoms enough to eat cheesecake & take sickness a day prior if I completely dehydrate, haha? Yolo or no? )

So in December the try for local primary ensued. My mom is doing all the paper and scheduling work as usual (cannot Adult). I went to one nice doctor on December 7, broke down crying weirdly over my situation (normally numb to the chronic near death experiences). She was amazing, but couldn’t accept me-I needed an internal Med-Ped doctor to “accept my case” as I was “too medically complex”.  Mom’s Hunt ensued, I got an appt. in the UNC based local system that linked with mychart & their better ER 30 mins away. 

I went to their ER for labs/my chronic emergency level fluid loss and malnutrition on Dec 13, like: “hi I have no primary care yet please help.” 

That was useful, hadn’t had labs since September. They’re all rough as one would expect, but I’m managing to keep my electrolytes acceptable with salt cravings, bullion and lemon water. 

Basically: The internal primary care appt. Finally came! It was, to my horror- a male doctor. I vowed to never have another given a few terrible experiences with them due to my age, gender and being underweight (as if I chose this nightmare-then I blame myself for it,  though it’s not something I can control/fix.). which had been up a full day prior so was very out of it. The ER  labs were useful for them, too. The intern doctor had an intern too, who was very nice and shockingly interested in my load of recent medical notes and since July daily recording diary of my food fluid, med and intake and vitals timebook. The book I made out of desperation trying to figure this out or find someone who could. Shockingly, they gave good advice and accepted my case!  They understood Ehlers-Danlos, amazingly. They asked what I wanted to start on, I begged for help on eating and drinking. He said the human body can process ~20g protein per two hours for muscle building/retaining, and with my weight & intake tolerance being so low I definitely had muscle wasting (I, who only ate 4 slices broth and bread daily-for over two years while desperately waiting on Duke GI doctors to figure out this wasn’t celiac and why food made me so sick). Apparently ill & old people die from bowel necrosis due to muscle wasting in situations like mine. No other doctor ever mentioned lacking protein or muscle wasting making everything worse. Duke doctors gave no aid aside from “I can send you to a dietician if you’d like it”-as if generic advice would aid the unmanageable food reactions. Also, male Dr was awesome not a nightmare. AWESOME. He saw my real actual email which literally contains Sarasbabyducks given my past pets, and he saw that& was like EPIC I RAISED RUNNERS, what breed did you have? Beautiful carcincle Muscovy, Ancona and Pekin were so loved by wee me. Given struggling to verbally communicate my mom also 2nd visit was like “we think she’s autistic- and my doctor IS FORMALLY DIAGNOSED and told me this!? I also found his IG sand apparently is into alternate herbal things & didn’t roast us for desparate experimenting!

The new doctors don’t know why my glucose is crazy high, and said I was allowed to try carbs with the high protein and see what happens/monitor it.They also bumped the UNC endocrinologist referral up for Carcinoid/NET tumor/possible atypical diabetes and scheduled a six week later progress check-this is unheard of in my life to have ongoing medical follow up, help, or doctors who genuinely care if I live or die. I am so grateful. 

I also got clearance on my plan to eat YUMMY HOLIDAY FOODs during Christmas week when my bro came and not monitor vitals/anything!  So prior to bro visit,  I embarked (cautiously so Christmas plans wouldn’t be ruined by me being sicker) eating at least 20g x3 daily and increasing my foods/trying some fruits/vegetables I normally get hyperglycemic from.  Shockingly my glucose and GI episodes improved some. It’s so hard initially to learn how much protein’s in what. Then Christmas! The so longed for first real family Christmas in the new old home, fully renovated! Bro came a day later than hoped (traffic), but made it on Xmas eve night! I’ll later blog of it! On Xmas week I tried to eat all the yummy foods unrecorded, mostly! It was a delicious disaster haha. Been Still recording glucose x3 daily, but thankfully not fluids or blood pressure now. That was tons of exhausting work, especially when barely functioning already. Getting back to the protein!...

This concludes the illness fog written content mostly from goodness knows when! Free to frolic on to editing the somewhat later project photos as a hopeful attempt to reawaken my brain from months of hours-daily medical meltdown endurance without local care access. Grateful to be in this beautiful world, for my mom, Medicaid approval, new Internal Med doctors, and the few pretend friends who perhaps, for some reason, are kind enough to read the ramblings of a happy hermit, sick lunatic. 

This is where I stopped writing, haha. 

Current tiny update February ‘24, I’ll fill in gaps later if I get the chance!: Jan. 2 I started some alternative herbs and medications my mom had been considering, given doctors not helping and time running out .Things supported by scientific papers and research, a hopeful cure if carcinoid tumor/pancreatic cancer. 3 herbal pills and 2 fluid meds. My glucose at least is starting to markedly stabilize (FEB update)! Supposing it’s the combined CBD, my DIY-not-to-die plaquenil, tumeric and berberine along with the other high powered liquid thing? The hours of horror fluid loss GI wise are harder to survive as I’m trying to eat more-some days I got in 1000 calories-a miracle for me.  I was in the new awesome UNC ER again Jan 13? after eating in a restaurant for the first time in 6 years-a glorious event for me to leave the home at all! For a funeral of my honorary granny. Backed up to my ribs despite chronic fluid loss-surprising and why it’s like glass shards in ribs when eating or drinking often. I’ve been out of it since and barely able to eat given my GI being badly broken, now require a new old people med device to somewhat more safely stay home alone, but now, mid Feb, feel like I’m coming out of the fog. No regrets, the restaurant was delicious! And now I’ve local GI care from UNC helping & as I write this current bit I’m leaving for my first combined colonoscopy & EGD done simultaneously later today. 6? EDG & enteroscopies and one colonoscopy at Duke from 2021-23. Issues found but no helping. Hoping they aren’t scared to fully sedate me here, haha. That only other 2022 Duke colonoscopy..Then the guy just blamed me for being too skinny, and was unable to find anything structurally, not being able to complete the procedure fully. I was half conscious and in pain screaming, when supposed to be all out anesthesia’d. Extra fentanyl this fine day of February, please! Also weirdly, my parent's equitabled distribution disaster was precisely 1 year ago today-When DVPO exdad dumped all my old & future medical bills on my former homeschool medical mom & attempted to take everything, almost suceeding after we were forced to flee homeless in 2022 to survive him. No support financially, what is mythical alimony and good lawyers? My mom having horrible mental breakdowns. Why exdad. I almost wheeled then walked out into traffic after this, no one in my life has ever made me feel more worthless and like a burden for breathing the air. How can one cope with being a burden to their own mother? This was post Jan 2023 no-med care post stroke when I could barely move, drink, swallow, eat or talk. Home alone surviving on the couch with a pencil in my hand giving me the will to try to “live to give, live to love” in little ways-if nothing more on earth I could say for.

Turns out I'm not real

Just something you paid for

What was I made for?

But somehow, we stuck together and smiled after the storm. So grateful she got her mother's ex-puppymill and land, a little lumpsum, and we have blessed freedom!

Anyway, tis all my bitty remaining brain cell can summon at the moment! Life is honestly improving so rapidly this year it’s dizzying! Being able to even blog a bit (even if a bit off-balance) is proof of this! local good drs, hope to survive/cure the one thing, getting to often enjoy family meals with my mom-never allowed historically ( medical and family toxicity situations), finally finishing the few leftover home renovations, the first year she’s fully divorced finally and mostly financially in an area of safety! I’ve dubbed it the year of (my mom’s) Julie’s Jubilee with laughable glee! And I’ve given the home and acres around it a loving dub of “Misfit Meadows” I am indeed making a sign for our front room, haha! So weird to be allowed to be in a home so happy!

I absolutely apologize/will edit if it’s not allowed to be so real here,  or if this content isn’t BZP friendly. And for photo embed fail pleasehelp? I have no perspective on what it's like to live as an ordinary person or how rules apply here. ‘Appy impaired unaware alien here. Virtual hugs to all, tis all! Missed blogging in the BZP beauty where I can be a misfit with so few openly judging me for the fairytale ramblings, thanks to all thee! 

"Think I forgot how to be happy...

..something I can be!"