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#postyourpill Fight the Stigma Surrounding Medications

#postyourpill Thank you to @DrAlexGeorge for starting the #postyourpill campaign to help fight the stigma surrounding medication.

This was the last painting that I was able to paint several years ago as I have slowly lost function in my hands. I wish I could say that the pills could bring back my painting ability, but I'll need surgery for that. And there's still no promise I will get that function back, but hopefully I will have less pain.

My pills help me with chronic fatigue, severe pain, chronic migraines, muscle spasms, and severe depression that comes with the package of chronic illness. Without these I would not be able to get out of bed, chew without pain, use my hands to perform a limited amount of my daily functions.

Believe me when I say I’m beyond holistic measures as I've tried everything possible to avoid jaw surgery when my jaw moved out of place, thoracic outlet syndrome surgery and now I need another surgery, maybe two. So I’m grateful for these medications. I’m grateful for much needed surgeries and nerve ablations where holistic measures have failed.

When people are so quick to judge, and assume that someone taking medications hasn’t considered a different option, I wish they could know what a person has already suffered though and tried. The chronically ill are desperate for relief, and would love a natural healthy kale smoothie to solve their woas. We are trying. We are researching. We have done acupuncture, meditation, massages, chiropractor, manifested and visited the top of Himalayan mountains and sought out sacred monks. Our super power is to remain optimistic and always searching for something better. For me, it’s surgery, accommodations, medications and hope.

I'm optimistic that one day I’ll paint again. Even if it takes accommodations, or months to finish one painting 5 minutes at a time, for art feeds my soul and I’m determined to win it back! 🎨❤️

#ThoracicOutletSyndrome #thoracicoutletsyndromeawareness #EDS #ehlerdanlossyndrome #ehlersdanlossyndromeawareness #Fibromyalgia #ChronicFatigue #ChronicIllness #InvisibleDisability #Art #disabledwomen #disabilityawareness #fluidacrylic #acrylicpour

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Artful Soul, Loses Hand Function

~ I believe this with all my heart. Even though my body has failed me in ways I never could have imagined. I was born with an artful soul and pliable creative hands, but due to genetics and disabling syndromes I’ve lost my artistic hands, and all my hobbies and passions. But one thing I have not lost through disabling pain and dysfunction are my eyes. I see art in nature and smiles, freckles and flowers. I hear music in laughter and rain. I hope to share the beautiful things I see through the darkness I experience every day, and bring hope to others when there is no light.
❤️ 🦓 🦄

#ChronicFatigue #ThoracicOutletSyndrome

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Surviving Ehlers Danlos syndrome

Hello everyone my name is Alyssa Kelly! i was diagnosed by a geneticist when I was in my 20's, I'm now 23. It has been a long lonely journey of loosing friends and figuring out who i am?

Nobody tells you that you actually prefer to be alone when you are trying to Aline with your highest self. I have turned to holistic healing as western medicine has let me down a majority of the time! There has been lots of tears and frustration as i would like to get somewhat better.

I have learned that the main thing affecting my symptoms is having a hyped up nervous system. There are multiple breathing techniques that can be done to help Calm your nervous system. I prefer to meditate daily!

Another factor i have found to have a huge impact on my symptoms is inflammation. I have found a mix of ground turmeric, ground ginger and ground dandelion roots in a tea to be particularly helpful at lowering inflammation. Fun fact dandelion roots are also low histamine and help with MCAS.

I have so much more to share about my journey in holistic health and surviving ehlers danlos syndrom. I hope you join me on this journey of trying to better myself.

#holistichealth #ehlerdanlossyndrome #MCAS


Happy Monday

Hello to all my lovely warriors out there. Today in Illinois it is a cool rainy day. Today is a day that I am struggling and could use some good thoughts good vibes or prayers. Three months ago I broke my ankle. Then one month ago I injured my meniscus on the opposite leg. I am in a great deal of pain and to top it all off I am losing even more hearing and faster than I have previously been. I am feeling so isolated and lonely because I feel like I can not connect to those around me because of the pain but also the hearing loss. #HearingLoss #ehlerdanlossyndrome #ChronicPain #ChronicFatigue #Bedridden

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What is wrong with me?

For a long time, I have asked myself the above question. "What is wrong with me?" I could see that I was different from other people through simple observation. I tried to change myself to meet nebulous standards.

Several years ago, I starting blaming my disorders, diseases, and syndromes for everything. I began to see myself as the diagnoses. I felt like there was no point in trying to change because I would always be "the other."

Then, all of a sudden, three years ago, my diagnoses all changed, which prompted an identity crisis. This made me doubt doctors and constantly double-check their work in order to hold them accountable. I wanted, needed to find the cause so I could fix it.

Now I am working on accepting myself--the DNA and environment that created me. I learn new skills to help protect myself and manage symptoms.

Next, I want to be able to trust my intuition. For 30 years I have listened to "authorities" who convinced me I didn't know what I'm talking about.

There is nothing wrong with me. I hold the answers.

#Anxiety #ConnectiveTissueDisease #Autistic #OCD #MentalIllness #ehlerdanlossyndrome #medicalgaslighting


Has anyone with Ehlers Danlos Syndrome had Coronavirus? Or Corona like symptoms?

Hi everyone! I was just wondering if anyone with EDS has had coronavirus or corona like symptoms as in the last couple of days I’ve been experiencing some. However some of them are very similar to what I experience day to day and I’m just slightly worried. Thanks xx #Ehlers -danlos #ehlerdanlossyndrome #ChronicIllnessEDS #HypermobileTypeEDS #EDSWarriors #CoronaVirus #COVID19 #covidanxiety

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Any gamers with advice on aching hands? #ChronicPain

I love to game, on console, on my computer and even on my phone. But my hands and fingers start to stiffen, ache, and sometimes go so cold they are completely numb.
I've considered the compression gloves I've seen advertised but I dont know if they work, and dont have a ton of extra funds to blow on things that wont help.

The pain can come from anywhere from 20-30 minutes to hours of gaming (which makes more sense). I'm just so tired of not being able to fully enjoy one of my escapes.
#ehlerdanlossyndrome #ChronicPain #ChronicIllness #Arthritis

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Eds skin

I never really thought my skin was fragile but I managed to cut myself in two places with my violin bow. pretty impressive I suppose #ehlerdanlossyndrome

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Do you ever feel like you have to pee with the slightest thing?

#ehlerdanlossyndrome like ill wash my hands and ill feel like i have to pee but once the water stops... Im fine.