My dad has proven not to be steadfast around balloons again
They have the peculiar habit of swooning him
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:
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!
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.