@InayaShujaat @mecfs @MECFSMedEd
I assume that drug would be mestinon? If so, there are a lot of people who are currently on this for #MECFS and/or #POTS, so you'll have lots of people who can speak to their experiences with it.

I've been on mestinon for over a year. It does make a little difference in my energy level - maybe a 5% improvement over my baseline without, similar to taking beta blockers.

Request for Mutual Aid
(Links at end of post)
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My partner and spouse wrote this fundraiser for our family because I haven't the brain power to do this.
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Please read, if you can:
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We are a family of five living in Bath, #Michigan. All five of us are disabled in different ways, but we have found a way to get by and thrive for many years. However, one parent had a sudden severe downturn of health at the beginning of this summer that has left us unable to continue getting the income that we need. The parent has several chronic medical conditions, #HidradenitisSuppurativa , Elhers Danslos Syndrome, and #POTS, as well as #autism

An infection brought home from school in May has led to a cascading series of medical emergencies, which resulted in hospitalization and a surgical procedure for a deep abscess in the thigh which will take months to heal, as well as physical therapy. The parent was bedbound for over a month, causing me to lose my job. I will still be unable to get a job for several more weeks, but I will be able to resume substitute teaching once the school year begins again and the children return to school in September.

We have to get through one month without being able to work, and we are asking for help to support our family through this difficult period, so that the parent can remain on bed rest and fully recover from the medical procedure.

Our family's chronic health conditions require a very specific diet to prevent events like this. Our children also have many severe food #Allergies This makes us unable to utilize food banks. I have already tried going to many different pantries. There was only one thing that we could eat, and we could not choose what we got, so we ended up with a lot of food that we had to throw away. This is the first abscess like this that the parent has had in four years, and it came when we were low on food and had to eat something we normally would not.

We greatly appreciate any who take the time to read this. We are also unable to get basic household needs and are having to get by without many medications and other essentials. We have an Amazon wish list with household items that we need but will not be able to buy for several months, which you can find here:

#Trans #Disability #Disabled #COVID #Autistic #MentalHealth #Crisis #MutualAid #Fundraiser #CommunityCare #ChronicIllness

https://www.amazon.com/hz/wishlist/ls/2JWR2Z5DYS03F?ref_=wl_share

For direct funds here is our
PayPal link:

https://paypal.me/DFlexer?country.x=US&locale.x=en_US

Das #CCCamp23 bekommt ein klassisches analoges #POTS und #ISDN-#Retro-#Telefonnetz:

"Camp 2023 – ISDN (and POTS)"
https://events.ccc.de/2023/07/23/camp23-isdn/

Ich finde es großartig, dass es solche Projekte gibt und bewundere die Energie, das alles in einer Zeltstadt im Nirgendwo gewuppt zu bekommen.

Today in "why are vets so much more competent than most human doctors?"

I had to take a seat while out with the vet, as I was getting very lightheaded. I kinda waved it off - "I have #POTS I just need to sit down." The vet assistant who heard me knew exactly what I meant and offered opportunities for me to sit when there was no need for me to be nearby.

I can't count how many doctors, nurses and medical assistants of all types I've mentioned this same diagnosis to, and I can count on the fingers of one hand how many have understood what it meant.

#HidradenitisSuppurativa anxiety is high in me today

I don't even think #anxiety is an accurate label for what I'm actually feeling, though.

It's like a slowly-descending terror, the sort that comes from insights on one's own current moment and feelings of inevitable catastrophe or doom, and the inability to escape or change its course.

For example:

a new bump or nodule felt under the skin while bathing can cause a nervous twinge in the back of my mind, like; what will this develop into? Then, after such a discovery, my logical course of action is to get out the anti-inflammatory ointments and the antibiotic creams and immediately apply them to the area(s) of the suspect lump(s).

I already use hibicleanse as body wash everytime I shower. #Hibicleanse kills normal #bacteria and #microbes on the skin, like #staph, #strep, #candida (yeast). To the average person with a healthy immune system, these microbes on small, balanced amounts don't trigger a response to go to 'war' from the #immuneSystem. My immune system however, is distrustful of whatever is on my skin, to the point that even the very texture of clothing can set it off, and my skin develops nodules-- not on the surface like #acne, which is usually a reaction to what's in the pore, oil glands, etc, but rather, a pocket of fluid forms in the nodule, sort of like a blister, almost, and it turns to pus (note: acne is plenty awful on its own-- I do NOT want to minimize that condition, my own brother had it awful).

It's also important to note that for every one with HS there can be different completely factors and triggers for each person, some being hormonal only, some environmental, or diet only or a combination of factors, including lifestyle, and what are considered #comorbid conditions and diseases that intersect with HS and or make it worse.

For me personally, it's a combination of environmental toxins, food and allergies and unregulated blood glucose levels, that and GI disease and Elhers Danslos Syndrome ( #EDS) and #POTS. Some of these intersect with #Autism and the nervous system which also are things that affect me and the severity of my conditions.

So, back to the HS infection risk--
Remember how I wrote that I must wash with hibicleanse all over my body?

Well, if I don't get rid of most of my skin surface microbes, the microbes could infect and culture the fluid-filled nodules and could develop (but not always in some people) a serious infection. This is where the slowly descending terror factors in. Once the process of infection starts, it's already in its path, and there are sometimes very limited ways to act, and every option puts me at the mercy of the medical system and the home environment I live in. Mobility disabilities and developmental disabilities complicate this all, because it takes much executive functioning to keep on top of skin care AND taking a bunch of pills that require different times and procedures.

I might edit this later, but I have to go an eat.
Thanks for reading if you made it this far

#BioWarfare #Genocide #Fascism #COVID #POTS #LongCOVID #Protest
#Revolution #Unions

#SensoryProductReview

👍🏻 TheraSpecs (specialty tinted glasses)

https://www.theraspecs.com

USE: Light sensitivity aid

REVIEW: I have to wear these glasses all day for them to be effective for me, but they've restored my ability to drive at night, as long as it's not a highly sensitive day already and I'm not cognitively too tired. I still remove them at night in situations with poor visibility (ex: weather) for safety. They are comfortable to wear and reasonably sturdy. Recommended.

#ActuallyAutistic #pwME #NEISvoid #POTS

@mecfs

NOTE: This review is shared from the perspective of *my* personal experience and is not an advertisement for the product. It is intended to serve as anecdotal data to support others with sensory issues.

Alright, time to revisit the intro message!
I'm located near Portland, OR in the PDX. I'm an infosec technical editor/writer by day, and a massive plant nerd by night.

I've been collecting aroids off and on since the early 00s. I'm beyond stoked that they're becoming so easily accessible today (even if they're still weirdly overpriced in some instances).

Outdoors, my spouse and I are growing a food forest and specializing in foods/plants native to our area. We're slowly turning an acre into a lovely orchard/salad bar.

We've got chickens/goats/sheep plus 3 cats and 3 tortoises. All this is to say we're creating our own little neurospicy disneyland/happiest place on earth.

Still very much taking Covid seriously, even though that's becoming a hella lonely proposition. We're both high risk and not keen on getting any more health issues than we've already got.
#NEISVoid #CovidIsNotOver #HousePlants #Aroids #MECFS #MCAS #POTS

Something that's really frustrating about realizing/being diagnosed with both autism and POTS in the same year is that I have no idea how much of my symptoms are caused by one or the other, or a combo of both.

I know that stress is my main trigger for my digestive symptoms(I also have IBS, because of course I do😅), and that I've definitely been in burnout most of the year, during which I've experienced an uptick in POTS related symptoms.

But now, after having a short period of feeling quite well both mentally and physically, I'm back to having a racing heart, feeling more anxious(especially in evenings?) and having more digestive issues(this also tends to coincide with anxiety in evenings), fatigue, and even body aches.

I've ruled out illness(everyone in the house is fine and it's been days at the same uncomfortable baseline) and ultimately I'm sure that the main cause is stress, but I feel it would be helpful to be able to parse out whether I'm too overstimulated or need more water or salt; if doing some yoga is what my body really needs, or if I actually just need to spend more time in bed/relative solitude. Or is it both/all?

Everything I do feels wrong or not enough. My husband is home from work all this week and I want to spend the time recovering but I don't know what it is I need most.

I know it's a very individual problem, but if anyone with a similar combo has had luck differentiating between autistic burnout and a POTS/IBS flare, I'd love to hear about that. Also, just solidarity.

#AskingAutistics #ActuallyAutistic #AuDHD #AutisticBurnout #LateDiagnosed #POTS #Dysautonomia #IBS #disabled #disabilitydon @actuallyautistic

My husband gave me an abundance of puzzles for Christmas(also an enormous avocado Squishmallow, not pictured) and we made quiche for breakfast!

The kids seem really pleased with their gifts, and we're having a slow, quiet day. Later we'll have dinner with my parents and sister.

This is the first holiday season since I realized I'm autistic and was diagnosed with POTS, and we've been able to intentionally alter our usual plans to create less stress.

I've already made some notes for what I'd like to do different next year(preparing quiches ahead of time and freezing them, wrapping gifts farther in advance, etc) but I'm grateful to have the awareness to be gentler with myself.

Now I'm going to knit for a while.

#Christmas #AuDHD #ActuallyAutistic #ADHDer #neurodivergent #POTS

Winter solstice (Yule). Interesting day to be getting a diagnosis. But yeah gimme that rebirth please! #POTS

My #introduction post: I'm #Autistic & was diagnosed with "hyperactivity" before #ADHD existed in the DSM. I self-diagnosed in my 20s, back in the early 2000s, but only got an official diagnosis (privately, as the NHS in my area was useless for AFAB adults) in January 2020. In addition, I'm #dyspraxic and #dyscalculic too.

I'm #disabled and #ChronicallyIll - my main diagnoses are #PoTs , #CentralSleepApnea , #Endometriosis , #InterstitialCystitis and #HidradenitisSuppurativa (among others).

As well as being #ActuallyAutistic , I'm an #atheist , a #humanist and #demisexual , #bisexual and #nonbinary .

I love the #Marvel character #TheWinterSoldier and the actor Sebastian Stan, #Rats , #knitting , #crochet , #tunisiancrochet, #writing and anything #medicine or #scientific . #Learning is definitely a #spin (and clearly I love hashtags too 😂).

If I say something that seems off, please just ask me to clarify. I always try to say exactly what I mean, but that doesn't always translate in reality.

I'm feeling pretty ok after my out adventure yesterday, just a little sore and a little more #POTS than usual, so that's good! But I'm still living the couch potato life today to make sure it stays that way and because my other partner is coming here this Sunday and I really want to be ok for that! So some essentials for today.

Just made this #tiktok to show what it's like dealing with a wonky body. Thought some of y'all might relate
#POTS #ChronicIllness

I really thought that after the weekend and Monday I've had my HR would be sky high today but it's staying, so far, in the lower 50s. Palpitations are really hard though, I can feel my heartbeat in my entire body. Not sure how much of feeling my heartbeat is #POTS or #autism though lol. 🤦🏼‍♀️

As a #HealthProfessional I know how important it is to listen to my patients and validate their experiences.
It’s so frustrating then trying to get care for myself and not receiving the same in return.
For context: I’m seeking an assessment for #POTS and the cardiologist basically informed me that there is no treatment and if I’m not regularly fainting why am I bothering.

Any #POTS and/or #LongCOVID peeps out there who would have some insight?

For 6-7 months after having Covid in Jan, I had a rapid heart rate. Finally in July, it seemed to level off. I had my flu shot a little over a week ago & I’m having a long of the same symptoms I had with LC - fatigue, high heart rate notifications. I had my Covid booster in August without any side effects like these. Could my LC (&/or possible POTS) be “reignited”, so to speak, by a vaccine?

I have an appointment for a stress echo & holter monitor on Monday, so I’m definitely going to ask there too.

This #introduction may be my only post for a while and I'm not positive I'm doing it right.

I'm a #queer 29 year old late-diagnosed #actuallyautistic #ADHDer and I have #POTS and am in #AutisticBurnout

I'm a married mama of two tiny humans and two fur babies. I love books, crafting, plants, and all manner of nerdy and witchy things.

I like learning about neurodivergence and mental health, parenting, pregnancy and childbirth, breast/chestfeeding, social justice and politics, and grammar(not an exhaustive list).

I believe in community, equity, and accessibility.

#neurodivergent #AuDHD #bisexual #Dysautonomia #disabled #feminist #leftist

Introduction Post!

I'm Danni Brennand. A Scouser living in Geordieland (translation: from Liverpool living in Tyneside, England) with the most amazing wife @izzy

We're mums to Sammie, who is awesome and sensibly doesn't do most social media.

I'm currently in my mid-30s, living life for the last decade almost completely in bed thanks to #ChronicIllness: Severe ME, #POTS, and related stuff. Also #ActuallyAutistic (as are Izzy and Sammie) and just a bit obsessed with penguins.

Die klassische #Telefonanlagen-Welt muss auch eine Goldgrube (gewesen?) sein.

Erst muss man das Basisgerät kaufen. Wenn man es nicht nur angucken sondern auch einschalten will, braucht man eine kostenpflichtige Aktivierung (wtf?). Dann Steckkarten für die Phone-Ports nach Bedarf (#POTS/#ISDN/#VoIP). Dann für jedes Feature und jeden Kanal (sogar #SIP) Lizenzen.

Ich finde die Technik durchaus faszinierend und würde damit gerne mal rumspielen, aber ich denke, ich bleibe bei #Asterisk & Friends.