britt, to medical
@britt@mstdn.games avatar

update:

I’ve been on the phone for 3 days with various groups (they’re great) to help me afford my meds and take all the necessary steps to begin treatment.

So… it’s 5 vaccines and a TB test to start. They do this prior to treatment because the meds lower my immune function.

I might be able to begin treatment in 2-3 weeks if all goes well. fingers crossed

ChronicIllnessHumor, to random
@ChronicIllnessHumor@mastodon.social avatar
halcionandon, to australia
@halcionandon@aus.social avatar

Can people PLEASE help me contact / /places of worship/ community groups & ask if they can help me find somewhere to live? If one can’t then they are affiliated with others that might and can ask people in their congregation. Put a plea on their message board irl or Facebook/ whatever online presence they have.

I am living with abuse /neglect and can’t do this anymore.

You don’t have to be in . Search for help in area. Search the . Anywhere.

Ask your place of if you have one.🙏

None of the orgs I‘ve been referred to help people with or
(Orange Door, Safe Steps I’ve tried them all.)

Please help.

@multipledisabilities @disabilityjustice
@socialwork
@mecfs
@mutualaid
@WythenshaweMethodists

halcionandon, to australia
@halcionandon@disabled.social avatar

Can people PLEASE help me contact / /places of worship/ community groups & ask if they can help me find somewhere to live.

Don’t have to be in . Search for help in area. Search the . Anywhere.

Ask your place of if you have one.🙏

None of the orgs I‘ve been referred to help people with or
(Orange Door, Safe Steps I’ve tried them all.)

I cannot live like this anymore.

@chronicillness @mutualaid
@disability

ahimsa_pdx, to Birds
@ahimsa_pdx@disabled.social avatar

"A New Birding Club Wants to Help COVID Long-Haulers Safely Enjoy Nature Together"

https://www.audubon.org/magazine/new-birding-club-wants-help-covid-long-haulers-safely-enjoy-nature-together

"Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID."

@longcovid

britt, to medical
@britt@mstdn.games avatar

I’ve officially been prescribed biologics.

Phew. I didn’t realized how hard that would hit… I have to keep reminding myself that “the normal average level of pain is zero, not 6-7.”

Now to wait for provincial funding, update some vaccines, and to jump through lots of hoops.

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for the week starting April 8:

https://www.s4me.info/threads/news-in-brief-april-2024.37987/#post-526743/

The news summary includes articles, videos, research, advocacy, coming events, and more.

@mecfs @longcovid

aby, to Autism
@aby@aus.social avatar

Packing for hospital next week.

I have shoulder surgery on Wednesday and it will be an overnight stay (hopefully only one night!), probably in a shared room.

Tips and tricks for preparation and packing would be super helpful, please!

Fury, to random
@Fury@mastodon.au avatar

Had a BAD hypo last night. I felt like time was pliable. Like one second was three hours or three hours was one second.

brianvastag, to random
@brianvastag@sciencemastodon.com avatar

Gift link to a good article on a jump in diagnoses of an autonomic nervous system disorder among young women especially, after COVID. It's called POTS, I developed it too after a viral infection and you definitely do not want it.

It's very much a part of the suite of awful things that can happen with .

https://www.washingtonpost.com/health/2024/04/10/pots-medical-condition-athletes-covid-pandemic/

AceyAngel, to mastodon
@AceyAngel@disabled.social avatar

I only raised about $67.15 on my PayPal fundraiser for food expenses and new glasses prescription / appointment.

If you are open to you can still purchase some art of mine here https://ko-fi.com/spaceyangelacey/shop

$400 is the goal.
Can also donate direct to;
CashApp
$AceyAngel

Or

Paypal
@AddriannaWing1

All shares and support VERY much appreciated! 🫶🏻

ahimsa_pdx, (edited ) to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for the week starting April 1:

https://www.s4me.info/threads/news-in-brief-april-2024.37987/#post-525404/

The news summary includes articles, videos, research, advocacy, coming events, and more.

(edited for typos)
@mecfs @longcovid

vlrny, to random
@vlrny@disabled.social avatar

Seemingly dead obvious thing I just realized that has unleashed a pile of self forgiveness:

I can't always be nice when I am in pain.

skinnylatte, (edited ) to accessibility
@skinnylatte@hachyderm.io avatar

This is an excellent guide to writing in plain English.

https://evolvingweb.com/blog/plain-language-guide-how-write-inclusive-digital-content-2024

"49% of adults in Canada have below high-school literacy levels, and 17% are unable to follow written instructions or read maps."

"Half adults in the U.S. struggle to read a book written for eighth-graders."

If your first instinct is 'why are people ‘dumb’?’ you are elitist and not inclusive. There are plenty of immigrants and others. As web professionals it should be your job to include everyone

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@skinnylatte
I have a degree, but I also have many cognitive issues due to my chronic illness (ME/CFS).

You never know who needs it. Please use plain language rather than scolding people for not understanding.

Thanks ❤️

(re-posting the link to make it easier to find)

https://evolvingweb.com/blog/plain-language-guide-how-write-inclusive-digital-content-2024

brianvastag, to mecfs
@brianvastag@sciencemastodon.com avatar

"Beth's work must continue..." a message from Laurie Jones, exec dir. of patient advocacy group ME Action, which was co-founded my late partner Beth Mazur.

Laurie bore a daughter shortly after Beth died and named her Georgina Beth - a beautiful tribute.

https://mailchi.mp/meaction/beaths-work-must-continue?e=70638fc8c9


broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

This attitude that chronic illness is a moral failing is the one that hurts me the most. People seem to feel it more strongly since Covid. Those who know me know how healthy I was… until I wasn’t. Disability can & does strike everyone - you can’t make yourself bulletproof.

hollie, to random
@hollie@social.coop avatar

I want there to be a bison emoji, for folks. And then we can offer a Higs, which is a very small hug, for people in tender states of pain and/or exhaustion.

Higs are technically Higs Bison hug particles, named after Petra Higs, who once soothed a chronically-ill bison with a very small hug.

Anyone want to draw a very small bison emoji?

broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

“Congrats - you’re old! Maybe this year you will try and be normal again.”

This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.

I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.

This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.

People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.

As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.

It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.

The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.

I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.

Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.

Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.

Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.

As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?

When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.

I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2


waysandbeing, to art
@waysandbeing@mas.to avatar
halcionandon, to melbourne
@halcionandon@disabled.social avatar
halcionandon, to mecfs
@halcionandon@aus.social avatar
halcionandon, to mecfs
@halcionandon@aus.social avatar
broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?

“Maybe your legs are just getting fat.”

Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care

This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.

For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.

So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)

Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.

Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.

I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.

Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.

MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum

I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.

This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.

Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.

Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.

Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.

This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.

And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives

#chronicillness #gaslighting #disability #disabilityjustice #advocacy #covidcautious #covidisnotover #spoonies #ableism #fatphobia #MCAS #POTS

broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

Doc to me: Could you be pregnant?

Me: Nope - they removed my uterus.

Doc: Are you sure? You look young. Maybe it was your appendix?

Me: I know the difference between my appendix and my WOMB.

Doc: Orders pregnancy test anyways

We really need to discuss how AFAB patients get treated by many doctors. If you need to do a pregnancy test on everyone as a matter of course - then just do the test. But don’t waste time arguing with me about whether I know the difference between an appendix and my LITERAL womb when I’m having a life threatening cardiac emergency.

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
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