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Wednesday, October 9, 2019

When insurance doesn’t cover a hospital stay...

In the US there’s an ongoing debate regarding health insurance, wether it’s really needed and who should be running it.

...we’re not here to talk about that.

What we are here to discuss is what happen’s when you have health insurance that can be increasingly frustrating and difficult and labels absolutely necessary things “not medically necessary” for stupid reasons. Now why does a health insurance company do that? Long story short; They want money and they're greedy.

I was hospitalized twice within a week of each other. Both times in the pediatric intensive care unit at my local hospital (actually two hospitals...I’m glad I live in Boston -_- MGH and MEEI are connected to each other) once as a direct urgent admission from the result of a laryngoscopes and extreme exhaustion (which what do you know makes breathing harder!) for another large multi-specialty  workup and monitoring over a four day period, and one night on the regular pediatric floor with close monitoring from one of the senior nurses. They would have kept me longer had we not had a Neurology appointment with the Dystonia/movement disorder clinic at Boston children’s the next day. They scheduled my surgery/EMG for That’s Wednesday (the day after Neurology) which started the second thankfully shorter admission to the PICU when I woke up in respiratory distress and unable to speak or swallow. After being kept overnight and having a swallow study done in the morning we were allowed to come home.

When we got home we received a letter that my 4 day admission from earlier that week has not been covered as it was deemed “not medically necessary due to no laryngoscopes being performed and no antibiotics given” My vocal cords are paradoxical you idiots I don’t have the croup and a laryngoscopes was performed as the grounds for admission! We called the insurance company the next day but because I could not give verbal consent to let my mother speak (I couldn’t speak at all for two weeks!!) with the lady on the phone she said there was nothing we could do.

Luckily my ENT came to the rescue, and wrote a note saying the admission was in fact needed and should be covered by insurance.

In conclusion,
Should insurance be difficult, talk to your doctor or their secretary or (if possible) give the person on the phone a very stern talking to with proof why such a hospital stay was required.

Until next time,

Monday, September 16, 2019

Follow me on Instagram (I’m more active there!)

If you wonder where I tend to disappear to for long periods of time in between blog posts the answer is Instagram! I’m much more active there nowadays as it takes less energy to take a picture than write a blog post and it’s helpful with portfolio building as well. Here’s a long list of some of my favorite illustrations from my art account ( @thedisc0panda ) and some that haven’t been posted yet but will...eventually. Happy scrolling! Tell me which is your favorite in the comments ❤️

Saturday, August 10, 2019

Top 10 Disability Instagram Blogs

The Disability community on Instagram is surprisingly quite vibrant, sharing their stories dealing with anything from hEDS (hyper-mobile Ehlers-dows Syndrome) to Celiac disease, to ASD and other neuro developmental disorders, to cancer, the list goes on. Here a list of my top 10 disability blogger accounts on Instagram:

1.  The Cute Syndrome
About: Foundation run by Hillary Savoie to support SCN8A research and education after her Daughter Esme

2. Hillary Savoie
About: Hillary’s non foundation account showing daily life with Esme

3. Tanis Mitchell
About: Run by a mom of a multi visceral transplant kiddo and their life after transplant
4. Rebellious story
About: Day to day life with MCAS and other disorders with a feeding tube
5. My EDS
About: Life with severe hEDS and related disorders
6. Stepping Stones for Stella
About: Foundation to make accessible “beach buggies” for children with disabilities named after the founders daughter Stella who has CP
7. Ashley Montano
About: Mother of a son with Williams syndrome and Post Pump Chores, and a daughter with severe autism
8. Sick and Artsy
About: A teenager with EDS and related disorders
9. Go Shout Love
About: Raises awareness and funds to help families with complex and expensive medical needs and rare diseases afford the care they need
10. LanaIsNFstrong
A little girl diagnosed with NF1 a genetic disorder that causes tumors in and around the body.

I’ve included the link to both my art and personal accounts below, while not completely disability centered, my personal account includes disability advocacy and speaking out rather frequently. They have been linked below;
Art account  (more active of the two)
Personal/Disability account

Are there any particular accounts you enjoy?
Comment them below I’ll be sure to check them out!

Until next time,

Tuesday, July 23, 2019

Old friends (Valan)

“You're too young to remember the Nerevarine, oh yes far too young my dear. Nevertheless, he was a rather good hero. He defeated Dagoth Ur and saved us all from the blight.” Neloth tells Anna as she sits eagerly listening to his tales of Vvardenfell. “Stop talking like I'm dead and she knows who I am, she's my friend after all!” I shout across the room. Neloth gives me a look of disapproval “It's rude to interrupt.” He says with a glare before turning back to Anna “Never stopped you.” I mutter just loud enough for him to hear and go back to my reading.

“Have you ever heard of somebody named Ildari Sarothril, Talvas?” I ask Neloths apprentice “I found something peculiar while reading that mentioned her.” He peaks his head over the book reading the passage until Neloth grabs the book “You will not speak of that name.” He says angrily taking the book and putting it on the “restricted” section of the bookshelf. “Why not?” I ask, curious on the subject of his rather odd reaction. My attention is drawn away for a moment when I notice a visitor had come up to the tower. None other than Teldryn Sero. “Here's your supplies as requested Neloth, including extra Canis root I happened upon earlier. Did I hear you discussing Ildari Sarothril? Thought I heard something about that when I came in.” Neloth takes the package with a huff “No. We were not. She was mentioned, yes, but we were not discussing the matter.” He says unpacking the contents; laundry that had needed to be repaired by the tailor in Raven rock, rice, condensed milk, tea leaves, raw Canis root, and various bottles of potions and ingredients. The typical care package to the tower. “Who's Ildari Sarothril?” I ask Teldryn, knowing he'd give me a better answer than Neloth or Talvas, and that Neloth would leave him alone granted he's a retired member of the Morag Tong...and still takes the occasional job. “Neloths former apprentice, she died a while ago. Somewhat insane girl but seemed a capable wizard for all I can tell. Volunteered for an experiment involving transplanting a heart stone in exchange for ones real heart.” Neloth stares into space grimly “I should not have let her do it, what a waste of magical talent.”

Suddenly the door slams and an out of breath and rather frightened Anna appears “Why are there zombies made of ash and why is a crazy lady with a staff controlling them?!” I take her away from the door and give her a cup of tea. “This was what I was reading about.” I whisper to Talvas on my way by. “Ok Anna tell us what happened.” The five of us sit around a table and Anna pulls out a worn journal. “Farkas and I were exploring an old fort earlier for the captain of the guard in Raven rock, to find out where the ash zombie things are coming from-” Teldryn interrupts “Those are called Ash Spawn my friend. Sounds less scary, and more accurate, anyways continue.” Anna gives him a slight smile “So we were in the fort and all of a sudden lots of those Ash spawn materialize out of the ash, we killed them and drove them off and I found a journal sticking out of something, it's belongs to someone named Ildari Sarothril, and explains how though someone tried to kill her, she came back from the dead, and is out for vengeance. Here, read it.” She passes the journal over. Neloth looks surprised and mutters something under his breath. “Go to the small cemetery just outside the tower down by the water and look in the coffin, that will tell us if this is real.” Neloth says getting up to get another cup of tea. Teldryn, Anna and I start to get up but Neloth makes her stop “Not you, you've been more than helpful. And where's that Nord that's always with you?” He asks “Farkas is in Raven rock talking to Captain Veleth, I saw him on my way out.” Anna nods “We split up after we got out of the fort to distribute information. Since I know more about magic, I came here.” Anna continues to talk to Neloth while Teldryn and I head outside.

On the cliffs overlooking the small cemetery we can see some ash spawn milling about, no doubt looking for their leader. “Bow and Arrow?” Teldryn asks looking at the cemetery and back at me “Eh why not, less risk of being torn to pieces.” He pulls out a bow as I quickly conjure one and within minutes the path is clear as we make our way down finding the coffin that originally held Ildari’s body is indeed empty, and holds a clue of where to find her. Taking the scrap of paper with the clue we return to the tower.

“Anna’s right, She's not dead. It's the heart stone that's somehow keeping her alive. Must be related to the ash.” Teldryn explains passing Neloth the paper “But she's gone insane, she hears the voices of the dead in the ashes, it says that in her journal. She raised an army to kill some miners because she got paranoid.” Anna adds “It's the heart stone that's making her crazy.” Neloth reads the paper over before placing it down. “So it was her that made my tower almost crumble. Here is her location.” He points to a tower that many think is abandoned on the island. “Go and seek her out. Unless you find allies to help you, leave no others alive.” We start to head for the door “Not tonight!” Neloth calls and we stop “The ash is too bad, wait until where is my tea? I swear the worst thing Ildari has done is killed Varona my new steward makes it too watery.” Moving away from the door with a sigh I begin to go make his tea. “At least you know how to make it right.” He says going over to the cupboard “It's only because I've known you a few centuries, Neloth. Give Drovas a break.” Neloth scoffs but says nothing more on the matter, if there's one thing that can calm him; it's tea.

Having had tea and a small meal for dinner Teldryn and I plan our mission, Neloth works more on his staff enchanter, as Talvas cleans up from an earlier experiment that day and Anna sleeps peacefully curled up in a corner of the library. “So here’s where she’s hiding, and here’s where we are.” Teldryn points to the map “If we can get in without disturbing the ash spawn and who knows what else that’s guarding the place we should be able to find our way to her fairly quickly, the area is mostly a single hallway with some stairs and a couple of rooms off of the main hall.” He explains further and pauses briefly. “Bring something that’s resistant to fire. she sure seems to be a fan of it...” Teldryn trails off and gets up to go look for something.

Having found what he was looking for Teldryn and I get ready, Talvas wishes us luck, Neloth reminds us “not to get to injured or they’ll be no one to make him tea and send off on ridiculous missions.” and Anna continues to sleep undisturbed. We set off into the ash.

“I think this is the clearest night we’ve had in awhile.” Teldryn murmurs looking up at the stars, both moons are visible, and Red Mountain can easily be seen on the horizon. The tower looks abandoned from the outside, except for the occasional movement from a window, showing it is in fact inhabited by createures of a more than unsavory nature. Teldryn and I sneak past a majority of the ashspawn, or kill them quickly if detected. We find Ildari in the middle of some kind of ritual. She turns to face us, her robes cut out around the heart with the implanted heart stone clearly visible. “So you’re the two that Neloth sent.” She glares at us. “He was always jealous, scared that I would surpass him in power, and now I have. You can’t stop me.” She raises her arms and a hoard of ashspawn appear from the ash. They attack us and while sustaining a few cuts and minor burns, are delt with quickly. Ildari stands looking somewhat surprised. “Did Neloth ever tell you he’s a friend of Eno Hlallu?” Teldryn asks killing the last ash spawn. “You really thought we’d go down that easily?” Ildari angilly flings a fireball at him that he easily sidesteps and watches it hit the wall with a smirk. “The Morag tong send their regards.” He throws a knife at her, wounding her arm that holds her staff significantly. We begin to corner her “Did Neloth ever tell you hes a friend of the Nervarine as well?” She looks at me and her eyes widen “It’s you. I should have known from the moment you walked in here, no one else I’ve ever met looks like you.” She pauses “But even you cannot stop me, The heartstone is my lifeforc. The ash is all around us, unlimited power is in my possession.” I look at the pulsing heartstone and get an idea. Teldryn seems to understand from the look I give him, and pushes Ildari against the wall and pinning her hands as I rip the heartstone out, ending her reign of terror. “Well, Talvas can safely cast his ash guardian spell now that we have a heartstone.” Teldryn says looking at Ildari’s lifeless body before burning it. “If she comes back as a very very angry ash spawn...I blame you.” I say scattering the pile of ashes before we return to Tel Mithryn.

“Well? Is she dead?” Neloth asks hearing us come in not looking up from his work. Teldryn tosses the heartstone and catches it “And we got a heartstone for you and Talvas as well.” Talvas takes the heartstone and gives Teldryn a brief kiss on the cheek before taking it to examine further. A still sleepy Anna sits up and abruptly asks Teldryn “Why his face is so red” Teldryn walks off. Neloth thanks is for the help with killing Ildari, his tower has finally stopped wilting and the ash spawn attacks have promptly stopped. “Here’s some money and a staff for the trouble. Now if you could please find Sammie...The tea’s gone cold and” I interrupt him “Drovas can’t make it right” He pats my shoulder “Exactly now stop standing about and go find her.” I leave to go downstairs. Neloth might be a snarky, sarcastic, grumpy old wizard, who may get on my nerves...but we’re still old friends.

It took such a long time to finish this on and off. More things are coming soon!

Sunday, June 30, 2019

Pride started with a riot

As pride month draws to a close with today being the final day, I thought it was worth it to bring something up about the month. June 28th was the 50 year anniversary of Stonewall, the riots led by two trans women of colour that started the LGBT movement. It was not always parades and glitter and rainbows, or companies using marketing with “solidarity” and saying they are “allies to the community” while continuing behind the scenes to support anti LGBTQIA+ organizations. Chick Fil A comes to mind as there’s one around an hour away from here that we sometimes pass driving. I never understood the appeal in the first place to be honest. Or that “Solidarity” they had gone on about the whole month of June disappears at 12:01 July 1st. There’s a whole other problem with pride parades not being accessible for people with disabilities or minors that needs to be changed. Pride should accessible for everyone (except the ones who take their links to pride you can all leave) not just adults or a select few of the more mainstream identities.

In Essence,
Pride should be accessible to everyone regardless of disability status or age. Queer people need solidarity, allyship, and support ALL YEAR LONG not just for a 30 day span.

Until next time,

Ive attaches a series of Instagram posts from my art account done in honor of pride month. All the ridiculous characters (or most of them at least) and their respective flags :) If you happen to have Instagram and enjoy my work (or me being more active than here usually) please give me a follow @thedisc0panda thank you!!
pride Illustrations part 1 of 3
Pride illustrations part 2 of 3
Pride illustrations part 3 of 3

Thursday, June 13, 2019

Five years to the day

Today marks five years to the day since an unknown virus devastated my nervous system and respiratory system.

Five years.

Half a decade.

260 weeks.

1825 days.

Coincidentally today is also my last day of school. At least it’s not Friday the 13th again.

These past 3 and a half months have been a whirlwind. Two stays in the PICU once after a bronchoscope and laryngeal Botox injection (5 actually) due to respiratory distress and inability to speak or swallow. And another stay in the regular floor. I have finally gotten my voice back partly though it is only a whisper and I still sound like a seal breathing due to Stridor. There has been many new questions, little answers, and multiple new diagnosis's. Dystonia in particular, Biphasic Laryngeal focal Dystonia is one of the less common forms of Dystonia, though one of the most common forms of movement disorder, Dystonia on the whole is on the rare side. The subtypes of the disorder are even rarer. Currently they are waiting for approval for genetic testing to test for mutations in genes identified to cause Dystonia such as DYT1.

It hit me recently that I will be stuck with this incurable potentially debilitating disorder for the rest of my life in addition to vocal cord dysfunction and the fact that I will almost certainly never get my sense of taste and smell back (The virus destroyed part of my 7th and 10th cranial nerves) in addition to whatever else is going on- there’s some type of GI component going on as well based on the swallow study I had in the PICU. There’s always something new, it’s a cycle of sorts.

Five years ago today my life turned upside down. But it is not all bad, I had to switch instruments yes but I happen to like percussion much more, and seem to have more talent with it too. I’ve made new friends, and continued friendships with old friends. And the unfortunate circumstances have helped my biology grade for sure.

Until next time,

Tuesday, May 7, 2019

Mast Cells, College, and Finals oh my!

 Hello again, 

Considering my last post was on my birthday and it is now May it's been a while. How have you been? It's has been rather hectic these past few months between school, college research, and the ever so complex medical side of things. We have not quite a month left of school and once it is over I'll hopefully be back to posting semi-regularly; I have some things planned! We have a bit more information on my current situation medically, as I'm still stridoring...Its been two months :( 

It turns out that what neurology thought was a tic/Tourette's syndrome is actually a rare form of Dystonia- Laryngeal Dystonia I have an appointment with the head of the movement disorder clinic at BCH in two weeks and pulmonolgy and ENT have been following closely, I see them next week. Currently we're trying a Mast Cell Inhibitor to attempt to bring down the swelling at the back of my throat and see if it does anything as we have had a hypothesis that Mast Cell Activiation Disorder (MCAS) Might play a component if it tests positive in a genetic test that either the MDC at children's or Pulmonary will conduct along with screening for other genetic mutations. 

Switching gears to school and summer plans; we get out on June 13th with normal school days up until the end of the year with finals built into them. This week feels more like the end of a semester though! I'll be doing a 2 week program at MassArt and being a TA at the MFA for a week other than working and going down to Providence to see a friend!  I do have a few post ideas that I need to write and a few stories in progress that I will hopefully find the time to finish once the school year is over. 

Sorry for disapeering for so long I had many times where I wanted to hop on and write something but life has gotten in the way lately, oh well! 

If you do want to keep up to date I suggest following me on Instagram-
Art account (more active of the two) @Thedisc0panda
Personal/Disability advocacy account @Maxstock2020

Until next time,