#heds

MOST RECENT

Had a big adventure to the Oregon Gardens last weekend, unfortunately I walked too much and used WAY too many spoons and am still paying for it in the form of horrible joint pain, heightened abdominal pain and overall exhaustion but it was a really fun adventure! I saw my EDS doctor last week and we are trying a few new medications including nebulized cromolyn, and a different heart rate medication, I had labs drawn to test me for autoimmune dysautonomia and will be having an ultrasound to check the size of my kidney stone that's causing problems in my left kidney right now. Full update in link in bio ☝️

Black and white is for Ehlers Danlos. 🌼
Ehlers Danlos Syndrome affects the collagen structure and function. Collagen is the protein that gives structure to hair, skin, nails, bones, ligaments and tendons. I can’t say that I’ve ever met anyone with Ehlers Danlos, but I know quite a few people in the spoonie community deal with it. 🌼
Check out this black and white ribbon bracelet in the shop.

"I love Hawke. I say it a lot. It makes things clearer, takes away doubt…" Wigs: @ardawigs
Ensembles: @victoriassecret

For reals though...

Jes hyvä päivä fyssarikäynteineen🙏 vaikkei hoitoja tälle eddylle myönnetäkään niin ainakin saa uusia henkisiä välineitä ja keinoja joilla pystyy kipuja hallitsee paremmin👍
Sen lisäks tehty "kirjallisia töitä" ja saatu ne eteenpäin, seuraavaks tekee hissipuhetta ens viikon #kokemuskoulutus tapaamiseen hui😁
Hyvää viikkoa kaikille👌🤗 have a good week everyone 🌞
#ehlersdanlossyndrome #eds #heds #pain #kokemuskouluttaja #makeupday #eimörköpäivä#invisibleillness #butyoudontlooksick #eitervevaikkanäyttää

When you try and be #supermum and #domesticgodness but end up in resus via ambulance. #disaster #embarassing #keepsmiling

Okay, can we talk about how much I love love love this pink blazer from @poshlocal?! Like I’m not usually a pink person, but this is just lifting my mood. Ignore the messy room in the background - it has been A WEEK. Actually let me take that back, it’s been a goddamn semester. .
. @poshlocal blazer @mmlafleur Jemison top and greenpoint skirt. .
#ootd #inmymm #outfitinspo #outfitoftheday #fashion #fashionable #fashionblogger #disabledandcute #fibro #fibromyalgia #gradschool #gradschoolproblems #gradschoollife #gradschoolprobs #edszebra #ehlersdanlos #ehlersdanlossyndrome #anxiety #anxious #spoonie #spoonielife #chronicpain #chronicfemme #chronicillness #heds #hypermobility #stressed #inmymm

IBS attack from hell and I’m in so much pain with my back 😩 fuck you fibro and eds!!!! #fibromyalgia #fibroflare #ehlersdanlossyndrome #chronicpain #ibs #inagony #somuchpain #heds #invisibleillness #chronicillness

Autistic and proud in today’s Pittsburgh Post Gazette (@pittsburghpg). Celebrate Autistic ways of moving and being in the world! This is today’s reminder that your value is not tied to your ability or desire to work. Reminder #2 hiring practices are discriminatory against autistic people (eye contact in an interview - a ‘requirement’) and workplaces are often inaccessible to people with disabilities. Time for some disability justice! .
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📷 @lakefong .
#disabledandcute #actuallyautistic #autisticandproud #autismacceptance #disabilityjustice #fibro #fibromyalgia #gradschool #gradschoolproblems #gradschoollife #gradschoolprobs #edszebra #ehlersdanlos #ehlersdanlossyndrome #anxiety #anxious #spoonie #spoonielife #chronicpain #chronicfemme #chronicillness #heds #hypermobility #stressed #inmymm

Sometimes I wonder if I'm not sick enough. Strangers would have no idea I'm battling chronic illnesses unless I tell them.
I can walk. But I have joint pain and presyncope while doing so.
I can eat. But I have pain, nausea, and bloating every time I do.
I can work. I can drive. I do everyday stuff.
Some days I don't really notice my own illnesses. I am so used to the symptoms I face daily.
However, when I'm in a flare, or if I overdo myself, I can't help but notice.

I was told by the geneticists last week that I don't mean all the diagnostic criteria for Hypermobile Ehlers-Danlos Syndrome. I don't know what to think about that. I almost feel like a part of me and my identity was taken. I don't know how else to explain what happening to my body. She believes that at the very least I have Joint Hypermobility Syndrome, but I may still have a different form of EDS.

My geneticist is reviewing my medical records and then she'll determine what DNA markers she wants to test. She also is suggesting I see an allergist for possible mast cell issues, and she wants me to both have a sleep study/evaluation and a have a work up to check if my easy bruising could be from an underlying bleeding issue.
#ChronicallyJadzia #chronicillness #chronicillnessproblems #invisibleillness #spoonie #zebra #POTS  #Dysautonomia #EDS #hEDS #IBS #MCAS  #Gastroparesis #TMJ #Wheelchair #Disability #PowerAssist

1. I've got that grunge-mechanic aesthetic down. (If I weren't so good at English, this would probably be ny everyday look as I worked on cars.
2. Thank goodness for nail tools that I've never used. They are the perfect size to work on the hardware that fell out of my light box.
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#instaNin #spoonie #grunge #mechanic #fibro #hEDS #dystonia #arthritis #bpd #adhd

😂

I like to make what I call cabinet meals—literally meals made from stuff already in my kitchen.
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Tonight I took inspiration from three different unusual chili recipes to make my sweet potato, beet, beer, and black bean chili. The balance was a challenge and I used some strange ingredients, including a couple splashes of orange juice, but the result is shockingly good! The only thing I would change next time are the proportions: because I only had one can of beans and no meat, it came out a little too liquidy. I could drain it but the liquid is so damn good, that’s not happening. 😆
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Now that I have my rolling, kitchen chair, I’m trying to cook more often. It helped soo much! One of my favorite hacks, by far.


#nofilter #chili #foodporn #food #instantpot #instafood #instafoodie #foodie #vegetarian #vegetarianrecipes
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#ehlersdanlossyndrome #ehlersdanlos #EDS #spoonielife #zebrastrong #zebrawarrior #spoonielife #chronicillness #fibromyalgia #potssyndrome #hEDS #chronicfatigue #chronicfatiguesyndrome

🆘POR FAVOR COMPARTE LA HISTORIA DE MI HIJA @mienfermedadinvisible
NECESITA IRSE A ESTADOS UNIDOS URGENTE! 🚨🆘 💁Gracias a las personas que comparten mi historia hoy puedo regalarles esta sonrisa.😇💖
Gracias a esas personas que donan hoy puedo mantenerme vida.
Pero no existe nadie que pueda ayudar siempre, por eso lo más necesario es MULTIPLICARNOS.
ENTRE MUCHAS PERSONAS VAMOS A LOGRAR QUE EN MENOS DE 3 MESES YO LLEGUE A USA Y PUEDA SALVAR MI VIDA. 😇
⚠️⚠️⚠️⚠️⚠️⚠️⚠️
NECESITO CON URGENCIA IRME USA Y SER EVALUADA.
🚩POR ESO HOY TE IMPLORO:
✅ Comparte mi historia en tu facebook, QUIEROSEGUIR VIVIENDO. ⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️ www.gofundme.com/superarlensiu

Paypal: mienfermedadinvisible@gmail.com

Banesco ahorros
01340447084472084378
Arlensiu Daza
CI 17285065

Foto @exzorltg

🔮Many of our nights our spent like this. My shoulder slipped out of place which causes it to spasm. The pressure with the heat helps ease them and also makes it easier to break them up! It causes a lot of pain. I am thankful to have my husband help me. This is our reality!🔮
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#spoonielife #spoonie #ehlersdanlos #heds #hypermobility #zebralife #ehlersdanlossyndrome #chronicillness #chronicbackpain #herniateddisc #cervicalstenosis #spineinjuries #invisibleillness #doilooksick #legalizemedicalmarijuana #heatingpadlife #marriedlife #medicalrefugee #nevadabound #risingzebra

💁Gracias a las personas que comparten mi historia hoy puedo regalarles esta sonrisa.😇💖
Gracias a esas personas que donan hoy puedo mantenerme vida.
Pero no existe nadie que pueda ayudar siempre, por eso lo más necesario es MULTIPLICARNOS.
ENTRE MUCHAS PERSONAS VAMOS A LOGRAR QUE EN MENOS DE 3 MESES YO LLEGUE A USA Y PUEDA SALVAR MI VIDA. 😇
⚠️⚠️⚠️⚠️⚠️⚠️⚠️
NECESITO CON URGENCIA IRME USA Y SER EVALUADA.
🚩POR ESO HOY TE IMPLORO:
✅ Comparte mi historia en tu facebook, QUIEROSEGUIR VIVIENDO. ⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️ www.gofundme.com/superarlensiu

Paypal: mienfermedadinvisible@gmail.com

Banesco ahorros
01340447084472084378
Arlensiu Daza
CI 17285065

Foto @exzorltg

“Plenty and peace breeds cowards: hardness ever of hardiness is mother.” -#shakespeare- I feel bad for the people that don’t have any struggles in their lives. When a bad thing happens to them it’s like the end of the world. Me...I’ve been through a thing or two. Haha. That’s an understatement. Even before my EDS diagnosis, I went through #hardships I wouldn’t wish on anyone. I truly believe though that those hard times made me into the #motherofall #warriors that I am today. They made me #brave enough to take a chance to let love into my heart. Brave enough to let love in my heart AFTER I knew that I was going to have health struggles for the rest of my life. Brave enough to take the chance to let go of the worries that I’d be a burden. All that love 💕 gives me extra strength on the days that I don’t feel so warrior-like. Find your inner warrior, be brave and take a chance today!🤓 📖 💜📚 💪🏻🙌🏻#nationaltakeachanceday #nationaltalklikeshakespeareday #livinginthenownotthen #LINt...#ehlersdanlosawareness #osteoarthritis #invisibleillness #zebraspoonie #spoonie #spoonielife #chronicillness #hEDS #fybromyalgia #butyoudontlooksick #dysautonomia #complexregionalpainsyndrome #prosthetichip #fullhipreplacement #spinalfusion #spinabifida #spondylolisthesis #thoracicoutletsyndrome #basilarmigraines #asthma #mastcellactivationdisorder

🍛Sarah's Anti-Inflammatory Rice🍛
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Ingredients
2 cups Rice (I used Jasmine)
2 tbs Ground Tumeric
1 tbs Garlic Powder
1 tsp Black Pepper
1 tbs butter
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Bring water to a boil. The amount of water you use will vary depending on the rice. Refer to packaging instructions. Add rice, butter, and seasonings. Stir and cover. Reduce heat to low and let simmer untill rice is cooked and you can fluff it with a fork. Enjoy! This is also a great meal prep item for days I am low on spoons! 😀
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#spoonielife #spoonie #ehlersdanlos #heds #hypermobility #zebralife #ehlersdanlossyndrome #chronicillness #chronicbackpain #herniateddisc #cervicalstenosis #herniateddisc #spineinjuries #invisibleillness #naturalhealing #foodismedicine #anti-inflammatory #tumericrice #holistichealth #cauliflower #sirachalife #risingzebra

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