#heds

New #introduction post!

I'm Alicia and I'm a fibre artist (#dyeing #handspinning #felting #needlefelting #weaving #crochet #embroidery #upcycling #sewing) with interests in #mandala #art #psychedelicart #sacredgeometry #neurographicart and #watercolors.

My family and I run a business called @Fibre2Fabric where we dye all sorts of exotic #fibre #yarn, and #fabric.

I live in the country with my partner and our 6 #cats, 3 #dogs, #snake and #crestedgecko where I enjoy my many interests. (#gardening #plants #herbalism #fungi #music #ukulele #piano #dancing #flowart #reading #writing #tarot #poetry #haiku #cozygames and I'm getting more into #opensource / #linux)

When I say flow art, I mean spinning props like #hulahoop #leviwand #puppyhammer #poi #staff #silkfans #firefans etc.

I love #languagelearning. I studied #German and #Spanish as a kid, took #Japanese in uni, and I'm currently studying #ASL #Cree #Tokipona #Spanish and #Chinese. I also dabble in #French and #Latin sometimes and I'm learning #Greggshorthand to write faster. Cree is my favourite language and Spanish is my second.

I've been cursed since childhood with that lovely trifecta of #heds #pots and #mcas. Healing slowly but surely.

Hope I get to meet even more cool people the algorithms would normally drown out on other social media sites. I love it here!

#intro #yeg #edmonton #alberta #canada

my skeleton is being a real b*tch

#ra #rheumatoidarthritis #eds #heds #jointpain #jointpainhumor #jointhealth #jointinflammation

Here are my 3 good things of the day (February 20th 2025):
(Try to think about yours as well, it can really help! And if you want to, share them with me in the comments.)
- a phone call
- drawing
- having a bit more energy

#mecfs #heds #pots #audhd #gratitude #3goodthings

Here are my 3 good things of the day (February 17th 2025):
(Try to think about yours as well, it can really help! And if you want to, share them with me in the comments.)
- letting myself feel emotions
- a good phone call
- managing to finish a to-do

#mecfs #heds #pots #gratitude #3goodthings

Here are my 3 good things of the day (February 16th 2025):
(Try to think about yours as well, it can really help! And if you want to, share them with me in the comments.)
- being able to wash my hair
- resting
- dizziness being a bit better

#mecfs #heds #pots #audhd #gratitude #3goodthings

Here are my 3 good things of the day (February 15th 2025):
(Try to think about yours as well, it can really help! And if you want to, share them with me in the comments.)
- having a good lunch
- a phone call
- finding an entertaining mobile game

#mecfs #heds #pots #audhd #gratitude #3goodthings

Here are my 3 good things of the day (February 12th 2025):
(Try to think about yours as well! And if you want to, share them with me in the comments.)
- helpful calls with 2 doctors
- helping someone out
- feeling a bit better than the last few days

#mecfs #heds #pots #gratitude #3goodthings

Here are my 3 good things of the day (February 11th 2025):
(Try to think yours as well, it can really help! And if you want to, share them with me in the comments.)
- 3 good phone calls
- drawing some zen tangles
- a very good dessert

#mecfs #heds #pots #audhd #gratitude #3goodthings

Here are my 3 good things of the day (February 10th 2025):
(Try to think yours as well, it can really help! And if you want to, share them with me in the comments.)
- a phone call
- playing mobile games
- listening to music

#mecfs #heds #pots #audhd #gratitude #3goodthings

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

#art #bodyHorror #chronicIllness #chronicPain #coatHangerPain #coathangerpain #disabilityArt #disabilityJustice #Dysautonomia #eds #heds #longCovid #longcovid #medicalArt #MillionsMissing #neis #NEISvoid #POTS #pwLC #pwme #spoonie

Here are my 3 good things of the day (February 7th 2025):
(Think of yours as well, it can really help! And if you want to, share them with me in the comments.)
- eating some chocolate
- watching old comfort YouTube videos
- listening to music

#mecfs #heds #audhd #audhd #gratitude #3goodthings

Here are my 3 good things of the day (February 6th 2025):
(Think of yours as well, it can really help! And if you want to, share them with my in the comments.)
- doing some online volunteer work
- playing a pc game
- having some nice snacks

#mecfs #heds #pots #audhd #gratitude #3goodthings

Here are my 3 good things of the day (February 2nd 2025):
(Also, think about yours! It can really help.)

- managing to shower
- having a nice lunch
- reading for a bit

What are your 3 good things of the day? Share them with me in the comments!

#mecfs #heds #pots #audhd
#gratitude #3goodthings

Here are my 3 good things of the day:
(Try thinking of yours! It can really help.)
- petting a dog
- managing to put a lot of paperwork in order
- a phone call

What are your 3 good things of the day? Share them with me in the comments!

#mecfs #heds #pots #audhd #gratitude #3goodthings

A late night thought for #EhlersDanlos zebras :

Used to get #MCAS reactions a lot with certain foods and drinks (inflammatory response) which made me feel lousy and warm or even overheated all year round.

So I cut them all out. But one unexpected reaction of cutting the offending items is I now feel cold most of the time.

Night all.

#ThingsThatMakeYouGoHmmm #hEDS

Here are my 3 good things of the day:
(Also, think about yours! It can really help.)
- reading on the balcony for a bit
- playing a pc game
- being able to write down some thoughts

What are your 3 good things of the day? Share them with me in the comments!

#mecfs #heds #gratitude #3goodthings

Came home after a tiresome trip to Dublin for medical appointment, and was feeling dreadfully tired and sore (due to #hEDS and #AutoimmuneArthritis) and rather sorry for myself. Cheered right up when saw this lovely book post of my Advanced Reader Copies of a book of essays by Irish autistic people that I had the honour of editing

Here are my 3 good things of the day:
- getting old furniture from someone
- talking to someone
- playing a pc game

What are your 3 good things of the day? Please share them in the comments!

#mecfs #heds #pots #audhd #gratitude #3goodthings

Adventure awaits! Gonna get out of the house on this cold day to go and see a friend. Definitely need to bring my #Rollator with me though because I messed up my right knee hardcore. It popped and cracked really hard last night and now my knee barely can carry weight without shaking horribly. All I did was stand up and turn to walk around the couch!
#hEDS #Sublaxation #LooseyGoosyJoints #Disabled

Here are my 3 good things of the day:
- finishing a drawing
- watching a new series
- playing a pc game

What are your 3 good things of the day?

#mecfs #heds #pots #audhd #gratitude #3goodthings