#hsd awareness month

[samuel-star]

Happy EDS and HSD awareness month! This month, I’ll be celebrating by getting about a million more symptoms and having a flare up on day one!

As a matter of fact, I wasn’t aware enough so my body decided to bring back symptoms that my doctors and physical therapist already helped out with!

Ow

Ow

Ow

Ow

Ow

(That’s me walking.)

[cannabiscomrade]

It's Gastroparesis Awareness Month

Hi! I have gastroparesis and I'm an insufferable know-it-all so let's talk about it!

Gastroparesis, or a paralyzed stomach, is a condition that causes delayed gastric emptying.

This can cause a range of symptoms and complications:

nausea

vomiting

early satiety/fullness

upper gastric pain

heartburn

malabsorption

dehydration

malnutrition

Gastroparesis can be treated by a gastroenterologist, but often needs to be managed by a motility specialist due to a lot of misconceptions about the condition. Providers, especially in the emergency department, will commonly misdiagnose gastroparesis as cannabis-hyperemesis syndome, cyclic vomiting syndrome, gastritis, food poisoning, etc.

There are several commonly known causes of gastroparesis like vagus nerve damage from diabetes, injury to the stomach, and stomach surgery like hernia repair or bariatric surgery. There are also idiopathic cases with no known cause. Other causes of gastroparesis are:

Connective tissue disorders like HSD and EDS (commonly hEDS and cEDS)

Post-viral (like COVID, viral gastritis, mononucleosis/Epstein-Barr)

Restrictive eating disorders

Autoimmune diseases like Systemic sclerosis (scleroderma), Lupus, Hashimoto's

Central nervous system disorders

Gastroparesis also has common comorbidities with conditions like:

POTS and other forms of dysautonomia (POTS, EDS, and gastroparesis are a common triad of diagnoses)

MCAS

SMAS (which can also present with similar symptoms to GP)

Intestinal dysmotility and esophageal dysmotility disorders (known as global dysmotility)

PCOS with insulin resistance

Endometriosis

SIBO/SIFO

Chronic intestinal pseudo-obstruction

Migraines

Certain medications like Ozempic and other drugs in that class act on the digestive system to delay gastric emptying, which has caused people to be diagnosed with gastroparesis. Some people report that their cases have not gone away since stopping the medication, others report feeling better after stopping. Other drugs like opiates and narcotics can cause delayed gastric and intestinal motility as well, but these are commonly known side effects of those painkiller classes.

Gastroparesis is classed based on severity and graded based on how you respond to treatment.

Severity of delay ranges from mild to very severe, and this is based on your actual stomach retention calculated at 4 hours into a gastric emptying study.

The grading scale ranges from one to three, one being mild and three being gastric failure.

There is no consistent single treatment that is proven to work for gastroparesis, and there is no cure. Treatments can consist of:

Diet changes (3 Step Gastroparesis Diet, liquid diet, oral sole source nutrition)

Prokinetic (motility stimulating) drugs

Anti-nausea medications

Proton-pump inhibitors

Gastric stimulator/gastric pacemaker

Pyloric botox and dilation

G-POEM/pyloroplasty

Post-pyloric tube feeding

Gastric venting/draining

Parenteral nutrition

IV fluids

Other surgical interventions like gastrectomy or rarely, transplant

Gastroparesis is a terrible disease and I hope that if any of these symptoms resonate with you that you can get checked out. I was misdiagnosed for a long time before getting a proper gastroparesis diagnosis, and all it took was a gastric emptying study. This is ESPECIALLY true if you're having post-COVID gastrointestinal problems that are not improving. I almost died from starvation ketoacidosis because of how serious my GP got in a short period of time post-COVID (I had GP before COVID), and now I'm tube reliant for all my nutrition and hydration.

Stay safe friends!

[that-disabled-princess]

What is EDS?

Hello! Since it's EDS/HSD awareness month, I figured I'd take some time to talk about the severe disorder that plagues me every waking hour of my life.

Disclaimer: I do not speak for the entire EDS community and my experiences are not universal.

Ehlers-Danlos Syndrome is a connective tissue disorder. It's genetic, incurable, and degenerative. It can cause a lot of problems, including frequent dislocations, POTS (postural orthostatic tachycardia syndrome), heart problems, chronic headaches and migraines, dietary issues, and chronic pain. There are a lot of different subtypes, including hypermobile EDS, vascular EDS, and classical EDS.

It is incredibly painful. I honestly cannot remember the last time I wasn't in pain. It affects everything from my diet, to my mobility, to my hygiene, to my hobbies, to my sleep. I sit down to shower and brush my teeth, I've cut a lot of gluten from my diet, I sleep with several different pillows, I have to accommodate all my hobbies and arts. My mobility aids include forearm crutches, canes, braces, KT tape, and more. Other disability aids include medications, my emotional support water bottle, ice and heat packs, and prescription sunglasses.

I have hypermobile EDS. But the least severe form of a severe disorder is still a severe disorder.

And I am in constant pain.

Everything is a chore, everything is an energy-draining task. Showering takes planning and involves gathering a small army of aids.

Leaving the house takes meticulous planning--which mobility aid will be most helpful today? What braces and supports do I need? Have I eaten enough salt? Will I need my gatorade? Have I refilled my emergency meds lately? Is the place I'm going accessible? And so on.

Engaging in my hobbies takes thoughtful accommodations. I have to be conscious of how my fingers bend when I crochet. I should be aware of how my hands and fingers and wrists are feeling while typing (like typing this post). I have to put all my braces on and bring my stool into the kitchen when I bake. I have to pack my backpack full of disability aids if I want to take a walk. I can't play viola anymore because it isn't safe right now.

I'm so tired. Every day I wake up and I am so so exhausted. Some mornings, while I'm lying in bed and letting my body adjust to being awake, I wonder how the hell I'm going to do this for the rest of my life. Waking up to stiff joints, vertigo spells when I finally crawl out of bed, recovering from an eating disorder while not being able to eat half the food in the house, struggling to leave the house, almost passing out in the shower, going to bed with headaches.

It's hard. It's so fucking hard. I'm not going to sugarcoat this in toxic positivity. Trudging from one day to the next sometimes feels impossible. Some days, it's digging your nails in and refusing to let the depressive thoughts take over. Others, the depression does take over, and there's nothing to do but ride the waves of your grief for a couple days.

Fellow EDS and HSD folks, I wish you all a safe and peaceful month 💖💖

To non-EDS/HSD folks, go learn about EDS and HSD this month!

[mochabeanzz]

seems fitting to be diagnosed with hsd during eds/hsd awareness month lol

[hummingbird-games]

Dev Diaries

March 5th, 2024

So. We're 3 months into the new year. Huh.

Updates from me? I started a new job! I've been reading/catching up on a toooooon of manga lately (I'm also sloooooowly making my way through a nonfiction read and can't help thinking how Corey would heavily sympathize with me. Sigh.)

I also got another free month of Spotify (lol, I think I'm the only person I know who only uses the free plan because I'd rather spend that money elsewhere??) so I've been on a listening spree and flagging songs for a writing playlist I will use for the majority of the HSDJY 2 drafting process moving forward.

I still have yet to play BG3. My family gifted me the physical edition, so I've been impatiently waiting for it to ship out. It's been 84 years JFJEHFJHJF!!

Hmmm...nothing else interesting has happened to me (that I can publicly share ☠️) so on with the game development updates!!!!!

What Has Gemini Been Up To? -> TKD (again)

March 16th!!! Y'all, this is the deadline the team and I are working towards for a finished and published game 😭 unfortunately my plans for full voice work won’t be realized by then (but they will be realized. Just in a few months. Honestly, it wouldn’t surprise me if y'all get the updated HSD 2 demo before the fully voiced TKD….)

What Has Gemini Been Up To? -> HSD:JY and Ko-fi

Ko-fi first!!

It’s only been a few months (since November??) but I’m super proud of my posting consistency! Granted, I’m a little anxious about how posts will look moving forward once I start moving major updates and general silliness to Tumblr. But. We shall cross the bridge when it appears.

March snuck up on me and I only have the free and any-paid-support ready, but the subbies are just There™️. That being said...when I'm quiet or posting non-Hummingbird content here, there's 99.9% chance I've made a free post on ko-fi.

Tumblr is looking like the other social media platforms right now with its flagrant support of AI, and it gives me a headache trying to decide how to keep everyone informed as well as share posts from my peers and new kids on the block. Anyhoo!!!

High School Daze goodies??

At the time of this post, a couple things have been happening that I haven't had the time (or the energy) to talk about. The obvious? HIGH SCHOOl DAZE: JUNIOR 2 HAS AN ITCH.IO PAGE!! I...have no idea when the full game will be out. I have an idea...but I don't want to say it and feel obligated to make that deadline just so I don't disappoint players. (I'm well aware that some people took one look at Crushed, went "Aww, that's nice, Gemini. Now where's HSD??" 🤣)

The first round of sprites have been commissioned!! If you peeped the key art (also done by my sprite artist, heehee she's lovely) you might notice some new outfits, some new hairdos. Fingers crossed I'll be able to update the page--to mirror the debut game's page--at the same time the new demo goes live (which will showcase all of or at least 75% of the common route of the full game. Stay tuned to find out if we'll focus on the friendship route or if I can defeat the Coding Monster to include all the variations for the romances too aha).

Writing wise? Five of the six total routes are outlined. (Florence's I've…barely started 🥲…this pre-production thing is kicking my ass). I’ve started drafting out the friendship route too, as seen by the random posts I’ve made about HSDJY 2. Well, a combination of friendship route + the common route with its lovely variations that aren’t a nuisance at all. Nope. *eye twitch*

I alsooooooo discovered that all the raw and edited music I created for HSD and for personal projects over the years using GarageBand were deleted. And I never backed them up. So. The tracks I made, the jingle for the splash screen, the main theme and it's 2 variations, and alllllll the little cute things I made that are as old as my own high school days are....gone.

Poof!

If I sound very calm about this, what an astute observation! But my anxiety is being used elsewhere, and I decided that I while I can't go back to the original files to tweak them, I've backed up the other files. And I don't mind starting from scratch with this.

But also y'all, please back up your shit. Please. Don't be caught slipping.

That poll I made a while back that now has results and I totally didn't forget about?? The boys won!! And I'm not surprised 🤣 I haven't decided yet if I'll do a live developer stream or a prerecorded one, but either way it'll happen closer to October, the 2nd anniversary date.

What Will Gemini be Up To?? -> Rest?!?!?

I assumed a lot of things about what would be done or not done by March, and that led me to loosely block out March as a 'rest' month. I wouldn't work on any projects, and instead would read, play console and computer games, and basically take the break I didn't take in December.

Well. The Knight Dance is still in production. And I commissioned sprites earlier than expected. And I didn't plan enough ko-fi content to be scheduled in my absence. LOL and I started a new job!? 🥹

But!!! But but but, I do need to take some type of break so I'll do my best to be scarce in this space (and lower the temptation to work because I see y'all are working LOL). Cool? Cool!

- Gemini 💛

[compost-intraining]

Happy HSD and EDS awareness month!!

Maybe the reason our joints and backs always hurt is bc we have to carry the weight of being the hottest coolest sexiest ppl alive <//3

Jokes aside I love y’all, take care of yourselves ♥️♥️

[lossie92]

Will be posting a mdtb soulmate AU sketch later, which means only 6 requests left to do from the list that I want to complete this month 💪

Also, it's EDS and HSD Awareness Month! Hope all my fellow zebra's have a good day (and month!) 😎🦓

[arcadian-vampire]

I seriously need to invest in those little finger/hand braces people with ehlers-danlos created... I'm running out of this stretchy bandage stuff, and my thumb is so wrecked rn that I can't wrap it in a way that actually Helps the joint without also cutting off circulation so my fingertip turns purple. Happy Ehlers-Danlos/HSD Awareness Month, be aware of me

[tiny-tokunaga]

May is EDS/HSD awareness month and like. These awareness months are meant to bring awareness to those that don't have it/know about it. SO YOU CAN STOP MAKING ME SO AWARE OF IT, BODY. What a time for a flare 😩

[genderqueerpositivity]

Pride, Awareness, Acceptance, Remembrance, and Visibility Events Calendar

(This is an incomplete list and will be updated as needed.)

January:

Slavery and Human Trafficking Prevention Month

Thyroid Awareness Month

World Braille Day (Jan 4th)

Trans Prisoner Day of Action and Solidarity (Jan 22nd)

International Holocaust Remembrance Day (Jan 27th)

February:

LGBTQ+ History Month (UK)

Black History Month (USA/Canada)

Polyamory Week (Canada, week of Valentine's Day)

Aromantic Spectrum Awareness Week (first full week after 14th.)

Chosen Family Day (Feb 22)

Rare Disease Day (February 28th)

March:

Women's History Month

National Developmental Disabilities Awareness Month

Bisexual Health Awareness Month (#BiHealthMonth)

Disability Day of Mourning (March 1st)

Zero Discrimination Day (March 1st)

Dyscalculia Day (March 3rd)

International Women's Day (March 8th)

National Abortion Provider Appreciation Day (March 10th)

World Down Syndrome Day (March 21st)

Neurodiversity Celebration Week (March 21st-27th)

Atheist Day (March 23rd)

World Bipolar Day (March 30th)

Trans Week of Visibility (week of March 31st)

International Transgender Day of Visibility (#TDOV, March 31st).

April:

Autism Acceptance Month

Queer & Trans Kink Month

Arab American Heritage Month

Sexual Assault Awareness Month

World Autism Acceptance Day (April 2nd)

International Asexuality Day (April 6th, may change yearly)

National Deaf LGBTQ+ Awareness Week (second or third week, alternates yearly)

Day of Silence (date varies)

National Transgender HIV Testing Day (April 18th)

Nonbinary Parents Day (third Sunday)

Anniversary of "Genderqueer" being added to the dictionary (April 20th, 2016)

Lesbian Visibility Day (April 26th)

May:

Asian American Pacific Islander Heritage Month

Jewish American Heritage Month

Mental Health Awareness Month

EDS and HSD Awareness Month

National Day of Reason (first Thursday)

International Family Equality Day (first Sunday)

Global Accessibility Awareness Day (third Thursday)

National Honor Our LGBT+ Elders Day (May 16th)

International Day Against Homophobia, Transphobia, and Biphobia (May 17th)

Agender Pride Day (May 19th)

Period Poverty Awareness Week (third full week)

Harvey Milk Day (May 22nd)

Pansexual and Panromantic Awareness and Visibility Day (May 24th)

World Thyroid Day (May 25th)

Menstrual Heath Day (May 28th)

World Multiple Sclerosis Day (May 30th)

June:

LGBTQIA+ Pride Month

Global Day of Parents (June 1st)

National Gun Violence Awareness Day (first Friday)

Pulse Night of Remembrance (June 12th)

Neurodivergent Pride Day (June 12th)

Learning Disability Week (third week)

Autistic Pride Day (June 18th)

Anniversary of Obergefell v. Hodges (June 26th)

National HIV Testing Day (June 27th)

Stonewall Riots Anniversary (June 28th)

July:

Disability Pride Month

Abrosexual Awareness Day (July 2nd)

International Femme Appreciation Day (First Saturday of July)

Queerplatonic Relationships Day (#QPRDay, third Saturday)

International Nonbinary People's Day (July 14th)

Nonbinary Awareness Week (week of 14th)

Week or Visibility for Non-Monogamy (July 15-21)

International Drag Day (July 16th)

National Parents' Day (USA, fourth Sunday)

International Self Care Day (July 24th)

August:

International Childfree Day (August 1st)

Autistic Dignity Day (August 8th)

Gay Uncles Day (second Sunday)

Polyamorous Awareness Week (third week)

International Butch Appreciation Day (August 18th)

Transgender Flag Day (August 19th)

Wear It Purple Day (Australia, last Friday)

International Day of Protest Against ABA (August 31st)

September:

Bi Pride Month

National Hispanic Heritage Month (Sept 15th-Oct 15th)

Bisexual Awareness Week (week of Sept 23)

Celebrate Bisexuality Day (Sept 23)

International Day of Sign Languages (Sept 23)

International Safe Abortion Day (Sept 28)

National Day For Truth and Reconciliation (Sept 30th, Canada)

October:

LGBTQ+ History Month (USA/Canada)

National Hispanic Heritage Month (Sept 15th-Oct 15th)

Augmentative and Alternative Communication Awareness Month

Domestic Violence Awareness Month

ADHD Awareness Month

National Kink Month (USA)

Black History Month (UK)

International Lesbian Day (Oct 8th)

World Mental Health Day (Oct 10th)

National Coming Out Day (Oct 11th)

National Freethought Day (Oct 12th)

OCD Awareness Week (second full week of October)

Trans Cake Day/Cake For Trans Friends Day (October 14th)

International Pronouns Day (third Wednesday)

Spirit Day (third Thursday)

LGBTQ+ Center Awareness Day (October 19th)

Intersex Awareness Day (Oct 26th)

Asexual Awareness Week (last full week of October)

November:

Native American Heritage Month

Autistics Speaking Day (Nov 1st)

Intersex Day of Remembrance/Intersex Solidarity Day (Nov 8th)

Transgender Rite of Ancestor Elevation (Nov 12th-20th)

Trans Parent Day (first Sunday)

Transgender Awareness Week (Nov 13th-19th)

Nonbinary Children's Day (Nov 13th)

Transgender Day of Remembrance (TDOR, Nov 20th)

National Polyamory Day (Canada, Nov 23rd)

December:

World AIDS Day (Dec 1st)

International Day of People With Disabilities (Dec 3rd)

Bisexual Pride Flag Day (Dec 5th)

Gender Expansive Parents Day (Dec 6th)

Pansexual Pride Day (Dec 8th)

Human Rights Day (Dec 10th)

[skepticalarrie]

https://crookedpurseoafopera.tumblr.com/post/657837466182631424/hey-so-i-began-following-you-like-a-couple-days

It's my first time asking someone on tumblr something, is it OK i do? You post a lot so I figured you'd know. So the post i linked mentioned that their teams AND twitter uas work to hide pictures of the boys. Is this true? Are hld not posting post hiatus larry pictures. Maybe cause they're were asked to?

Hi love, sure, you can ask whatever you want! ;) I'm sorry I didn't answer you earlier.

I don't think that's exactly what Gabi meant with that, no. But to explain that we're going to have to go back in time a little bit: So when they were in the band, there was undeniably a narrative that Harry and Louis were basically mortal enemies, right? I think everyone is aware of that. So they were never ever anywhere together, never alone, they couldn't fly together, they couldn't even write songs together - they wrote Perfect in different rooms, c'mon - but of course that wasn't the reality at all. So their team and UAs (completely controlled by 1DHQ) would always push this narrative on us and cover up for the fact that they were literally always in the same room and standing next to each other. There was this particular UA, actually, called fyz and they were very famous for cropping Louis out of pictures and make people only see what they were meant to be seeing. So basically:

When the reality was:

The context is so important. And people can twist things completely by simply cropping something out of the picture or photoshopping or simply not acknowledging the actual facts. So it happened a lot, with everything. Things like "Louis and Liam are in the studio today" and we would get a picture of them, and months later some other picture would leak with Harry there too (just an example, I don't remember if that was exactly how it happened lol sorry). They had thousands and thousands of exclusive photos and they would drop them when it was convenient.

So if gay rumours were out of control (they were all about het Harry, btw) Louis would pop up in a different continent w/ Eleanor because see? h&l are not together, they're as far away as possible. But the pictures were always proven to be from a different day or in a different context. They were just posting when it was convenient to push this narrative.

That's probably what Gabi meant with "UAs on twitter". We see what we are supposed to see, and this never changed. So no, it goes much further than questioning if HLD has post-hiatus pictures that they were asked not to share. I don't think that's the case at all. Bringing this to the present time is not hard to put 2 and 2 together and realize that sometimes they go MIA at the same time or one of them is always MIA while the other is somewhere publicly. And their individual teams are definitely always covering up for that. They casually place one of them on the other side of the globe when they’re actually not there and this kind of stuff we see all the time. But also, there's a theory that there's a photo ban preventing Harry and Louis to be photographed together - probably something post-hiatus, or even during the band but preventing them from being seen alone and out of work. It's called super-injunction. Based on that, I don't think people have pictures of Harry and Louis at all, it would be legally forbidden to publish any information or pics that expose a relationship between the two of them. Which just reinforces the receipt you're originally linking on this ask. Disposable cameras make a lot of sense.

Oh and I'm aware there's this theory about HLD being an insider and this doesn't make any sense to me, I don't think they're hiding something or pushing any particular narrative. This UA I mentioned earlier though? Fyz? They're HSD. Still, very biased towards this het Harry image and posting only what goes with this narrative.

[diagnosed-weird]

May is right around the corner, and it's also Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month!

Join The Ehlers-Danlos Society and raise awareness, visit www.ehlers-danlos.com/may-awareness

(Mention 3 of your friends or more here)

[hummingbird-games]

Dev Daries

Feb 3, 2023

IT’S (me again announcing) BLACK HISTORY MONTH AYYYYYYEEEE!!!!!!! 

Okay, some updates of the Crushed variety???

[image ID: a screenshot of the Itch.io page for the visual novel Crushed. end ID]

There are a few things I’d like to tweak before making the page public this weekend, one of them involving 1-2 more/different screenshots. Maaaaaybe some cute little graphics made via Canva?? But I’m starting to get an idea of the visual theme for this project. And it’s happening a lot faster than it did for HSD 😂

[image ID: a screenshot of a cell phone with an ongoing text conversation. end ID]

If this conversation looks familiar, that’s on purpose. I just want to bring your attention to what I’ve accomplished since last time LOL! All that’s left now is to replace the white bubbles with a different color, which is annoyingly not simple??? I also keep putting it off because that requires making A Decision. And I’m decision-ed out 💩 

As y’all are aware, this is for the Black VN game jam. The original plan was to have a small enough project that could be done by or before Feb. 28, but this thing kind of ballooned and I’ve scaled back to “release 6-7k word demo with completed art and graphic assets, music, and text”. 

As of the time of this post, the full 20k something words are coded. I can technically play through the whole thing including the three endings and it’s quite a thrill. I cannot wait until y’all get the same opportunity!!! (Ending 2 still makes me sob like a baby, wheeeeeeeee!)

The plan is to have the game out Summer 2023, but that is dependent on 1) how fast the art is finished (because ya girl is thinking unlockable CGs, but also there’s the sprite art which ahaha is the highest priority...ugh) and 2) how I’m doing health wise. But I will keep y’all posted, and of course I’ve got fun things to share as we wait for the full game to release!

CGs might be up in the air but...voice acting is a thing that’s happening??

Just tonight I had my first live direct with a voice actor y’all and now I see why so many game devs become addicted to incorporating it?!?!? (It’s partial VA so don’t get too excited but get a lil excited because the finished product is gonna sound so cool.)

At this point you’ve maybe seen the character reveals?? Or you’ve seen me Crying On Main and missed the self-reblogs 😭 y’all, I did not want to do a m!MC game!!!! I even went as far as making a post saying I wouldn’t make a BL game (note to y’all, back up ya shit AND never say never). But one of my unwritten mottos for this studio is to tell stories. Tell the stories that won’t let me know peace until they’re out.

And Crushed wouldn’t have worked with an f!MC. And I quickly found out it this story wouldn’t work unless it was bi Black boy. 

the biphobia out here is something I’m going to fight until I’m 6ft under

Black boys and their stories are not a monolith, and I’m sick of teen media being written for adult consumption while disrespecting the teen demographic

one Black teen is going to play this game and it’s my hope, my desire, that they will feel less hollow inside when they finish...

So anyhoo. That’s your update.

If you’re looking for my “special brand” of game reactions and uncensored thoughts, I promise I will make the side blog public sometime 😭 I’ve been switching energy to books and I’m still trying to prove an author I adore wrong! When I asked her how does she balance gaming and reading, she looked into the camera and told me ‘you don’t’ and I hate that years later she’s still right...

And that’s that! I’m off now 🤪

- Gemini

P.S. I still plan on doing the bad endings for An Everyday Love and making it everyone’s problem, and that’s like half the reason I’m dragging my feet, so forgive me 

[dravenxivuk]

I’m doing this over on Twitter, so let’s do it here as well...

May is EDS & HSD awareness month. 

Day 1. Meet me 

I'm Draven (she/her), I'm 42, was diagnosed with EDS in 2017 after years of misdiagnosis & 'mystery' symptoms. I live with my Wife & our 2 cats. I game, art, knit & crochet.

2. My EDS 

I have Hypermobile Elhers-Danlos Syndrome. Along with joint hypermobility I also suffer chronic pain, concentration problems, sleep disturbance, fatigue, postural orthostatic tachycardia, migraines & gastrointestinal issues

[liltumgrum]

May is Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month

I have Hypermobility Spectrum Disorder. Although once the diagnostic criteria is updated this year I’m sure that my label will be changed to a type of Ehlers Danlos Syndrome. HSD/EDS are genetic connective tissue disorders. To make the long story short, the part of our body responsible for binding, supporting, protecting, insulating, storing reserve fuel, and transporting substances is flawed. Even just one tiny flaw can cause major problems and comes along with a ton of comorbidity. More information here.

I’m going to try to participate on the social media awareness challenge, but make no promises. It may seem silly, annoying, or just to look for pity, however  this sort of thing is what eventually lead me to find a diagnosis. I would probably be dead if other people hadn’t shared their experiences on social media. Speaking of which, here’s an unfortunately necessary reminder: Yes, we are sick. Yes, we are disabled. Yes, EDS/HSD has and will continue to have a major impact on our lives, but we are just as much people as the rest of you. Don’t mistake our decreased quality of life and health for the “quality” of us as people. And please, please, please try not to use us as an excuse to belittle your our experiences and pain. 

Asks are open for any questions. Don’t worry, you’d be hard pressed to find a topic that I’m not willing to talk about. :)

Also, just gonna plop this here->

[anaunicornzebra]

This month is not only my 39th Solar Return month, it is also EDS & HSD Awareness month! First let me start by saying, yes I know I don't look like I am going to be 39! I get that a lot lol! I am very blessed as the days get closer to my Solar Return (May 11th) , I'm grateful to share this month with a cause that is my life. EDS or Ehlers Danlos Syndrome is a group of connective tissue disorders that can affect the entire body. The collagen in our bodies are defected and can cause so many issues. For me personal EDS affects my entire GI system, my heart and my joints. I can have many dislocations and subluxations throughout the day. My jaw, shoulders, fingers, knees, hips and ankles tend to dislocate/subluxations on a daily. My hips are the worse which is why I now use a wheelchair to keep me from fallen so much. Not only do I live with this invisible illness, I have other underlying illnesses like POTS, Dystonia and Mitral Valve Prolapse. I'm a mother that homeschool my son and have an adult daughter, a wife of 9 years but together 17 years and a GiGi to a beautiful grandson! There are days when I can barely get out of bed and yet I find the strength and courage to get up and moving. Being a housewife is also a full time job besides homeschooling and yet I make it through the day. As we get further more into the month, I will be sharing more of my story as to how I got diagnosed and what the last 5 years have been like for me. So let's stay Zebra Strong my fellow Zebra brothers and sisters! Keep fighting!

Ana 💪🏾🦓♿❤