#connective tissue disease

[burythecarnival]

i am so tired of this fucking pain. and feeling like i have a respiratory infection & the flu every single fucking day of my life. this is no way to live. even while i lie here as still as can be, tears will slowly flow from my eyes & the tears feel like boiling water on my skin. i grew up in a stoic irish family where you handle. your. shit. but, i have learned that bottling emotions is toxic & i am trying to get better at "sharing."

my sleep has been plagued with nightmares stemming from my pain of having limbs amputated, being stabbed, being burned etc. my sleep is terrible, i am not eating substantial meals & just feel alone even when people are around.

if you made it this far, bless your sweet face. i appreciate those of you who check on me. if you want to help me with meals & a couple of my prescriptions this week, it is of course incredibly appreciated.

cashapp: $dryboneslive / venmo: dryboneslive

luv, cuddles & cauldron bubbles, the ghost queen 👻

#ghost queen #fuck this #scleroderma #arthritis #ehlers danlos syndrome #pcos #rheumatoid arthritis #disabled sw community #chronically ill #this is hell #queer #myopathy #connective tissue disease #autoimmune #thank you for caring

[multiplicity-positivity]

Here’s some positivity for systems with connective tissue and joint disorders!

Connective tissue and joint disorders can be quite disabling and a challenge to deal with. The systems who deal with these disorders deserve to have their voices and experiences heard and uplifted in our spaces! There is hope for systems with connective tissue/joint disorders out there, and this post aims to spread some positivity for y’all!

💗 Shoutout to systems with weak or fragile skin, who have to be very careful because their skin is too fragile to hold stitches or other medical procedures!

🎶 Shoutout to systems whose joint disorder has caused them to develop arthritis, chronic pain, or other painful conditions!

☁️ Shoutout to systems who must be overly cautious in order to avoid easily dislocating their shoulders, knees, elbows, and other joints!

💗 Shoutout to systems whose joint pain and instability causes them to be regularly exhausted or fatigued!

🎶 Shoutout to systems with connective tissue/joint disorders who have struggled to be taken seriously by their healthcare providers or had to wait a long time to receive a diagnosis!

☁️ Shoutout to systems whose connective tissue/joint disorders exacerbate symptoms of their other illnesses, or whose other illnesses make their connective tissue/joint disorders worse!

💗 Shoutout to systems whose disorders cause them to scar or bruise easily!

🎶 Shoutout to systems who are questioning if they have a connective tissue/joint disorder or who are doing the research necessary to self-diagnose!

☁️ Shoutout to systems who have to deal with frequent bruising or swelling due to their disorders!

💗 Shoutout to systems with connective tissue/joint disorders who use crutches, wheelchairs, canes, walkers, rollators, or other mobility aids to get around!

🎶 Shoutout to systems whose connective tissue/joint disorders leave them unable to work, attend school, or pursue the hobbies and passions they want to!

☁️ Shoutout to trauma-formed systems whose origins are directly related to their connective tissue/joint disorder, whether from medical trauma, trauma from common dislocations, or other complications that come with these disorders!

💗 Shoutout to systems with connective tissue/joint disorders who need accommodations in order to live their best, healthy lives!

Learning to live and thrive with chronic illness is not always easy, but we promise it’s a worthwhile effort! Whether you’re struggling to pinpoint your needs, are unable to afford access to care and accommodations, or are otherwise struggling with connective tissue/joint disorders, please know that there is hope for you!

Please make sure to take it slow, rest when you need to, and not push yourself too hard. Your physical health is important, and you deserve to go at your own pace in order to properly take care of yourself! We’re wishing you a future full of peace, joy, accommodations, and people around you who accept you as you are and are willing to help you when you need it. Remember we believe in you and we’re rooting for you in all that you do!!

(Image ID:) A pale orange userbox with a cluster of multicolored flowers for the userbox image. The border and text are both dark orange, and the text reads “all plurals can interact with this post!” (End ID.)

#multiplicity #pluralgang #plurality #actuallyplural #system positivity #plural positivity #plural pride #system pride #connective tissue disease #joint discomfort #eds #ehlers danlos syndrome #heds

[my-hyucking-spoons]

#ehlers danlos syndrome #connective tissue disorder #connective tissue disease #eds zebra #meme #my

[aelianated-star]

SOMEONE TELL ME WHY LIQUID NUTRITION/TUBE FORMULA AND HOMEHEALTH COMPANIES MAKE THEIR PACKAGES/BOXES SO DAMN HARD TO OPEN?? Like your customer base is malnourished /chronically ill/disabled people and y’all had the AUDACITY to make the boxes so hard to open that even my able bodied, male family members struggle to open it?? I know it’s expensive (god bless insurance actually paying for something for once bc there’s no way I could afford over 9 boxes a month at 72 dollars a box) and they’re trying to prevent theft, but I can guarantee that nobody who sees these shipments of giant liquid nutrition boxes is going to try and nab it.

#gastroparesis #stomach paralysis #hot girl stomach problems #disability #digestive disorders #intestinal paralysis #tube formula #liquid nutrition #AND WHY IS IT SO DAMN EXEPNSIVE #in this economy? #chronically ill #chronic illness #scleroderma #diffuse scleroderma #connective tissue disease #ehlers danlos awareness

[schizoaffectively]

So yesterday's geneticist visit went very well! I got genetic testing for connective tissue things, including EDS. However, I don't meet criteria for Hypermobile EDS because of my med for rheumatic conditions working. And due to lack of known family history of any EDS, it's not high on their expectations for the results.

I am indeed very hypermobile as the geneticist said after examining me, and she ordered an ECG/EKG and an echocardiogram. I got the ECG done there, and the echocardiogram will be done at a later date, since that was more of a referral I think?

Anyways, they think it might be rheumatic connective tissue stuff rather than a genetic cause. I have to wait until around the end of August for my genetic results, though.

Also, I apparently got a dx of Undifferentiated Connective Tissue Disease (UCTD)! So that's interesting!

#physical disability #physically disabled #disability #disabled #actually disabled #uctd #undifferentiated connective tissue disease #connective tissue disorder #connective tissue disease #eds #ehlers danlos syndrome #geneticist #health update #health stuff #yves blogging

[longhaulerbear]

(via Dr. Amy Proal interviews Dr. Ilene Ruhoy about diagnosis/treatment of structural issues such as CCI - YouTube)

Ilene S. Ruhoy, MD, PhD is a board certified neurologist and Medical Director for the Chiari/EDS Center at Mount Sinai South Nassau. Dr. Ruhoy has trained in both pediatric and adult neurology at Seattle Children’s Hospital and the University of Washington where she received additional training in mitochondrial medicine and neuromuscular medicine. She also completed a two-year fellowship in Integrative Medicine at the University of Arizona under integrative physician Dr. Andrew Weil. Now, at the Chiari/EDS Center, Ilene uses a combination of both allopathic and integrative approaches to treat patients with chronic conditions such as EDS and ME/CFS, where she focuses on the diagnosis and treatment of structural issues such as craniocervical instability in such patients.

Structural issues can be caused by inflammation, often autoreactive, autoantibodies, etc.

Most viruses have ways to break-down connective tissue.

Doppler ultrasound is helpful for tracking cerebral blood flow.

#youtube #connective tissue #connective tissue disease #CCI #craniocervical instability #PolyBio #research

[sommesick]

Vitamin D is increasingly recognized as an important mediator of immune function and lung health.

We have shown that there is a high prevalence of vitamin D deficiency and insufficiency in patients with ILD, particularly those with CTD, and that lower 25-hydroxyvitamin D3 levels are associated with reduced lung function.

#Vitamin D deficiency #ling function #immune system #connective tissue disease

[dangerdust2]

Conclusion

CTD is highly prevalent in patients with pneumoconiosis, especially in patients of asbestosis, and silicosis/coal mine workers’ pneumoconiosis. Female sex and later stages of pneumoconiosis are associated with an increased risk of combined with CTD.

#connective tissue disease #Pneumoconioses #asbestos #silica

[kalexwalker]

A Quick Life Update

I will do my best to make it brief, but I do understand that brief for writers is a little different. Content Warning: I'll touch on depression and suicidal ideation, and this is the most candid I think I've been because I always say, "I'm okay," even when I'm not. First off: Earlier this year, I moved into my own place for the very first time in my life. Now, I know, I…

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#autoimmune illnesses in black women #connective tissue disease #k alex walker #kalexwrites

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

#disability pride month #disability pride #cpunk #cripple punk #multiple sclerosis #marfan syndrome #cerebral palsy #bells palsy #hidradenitis suppurativa #cauda equina syndrome #mixed connective tissue disorder #hyperandrenergic pots #eds #ehlers danlos syndrome #stickler syndrome #mitochondrial disease #cystic fibrosis #sickle cell disease #myasthenia gravis #post-cholecystectomy syndrome #swan #syndrome without a name

[embracingspirit]

Cultivating Love

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#autoimmune disease #awareness #choice #chronic pain #connective tissue disease #gratitude #happiness #health #healthy #healthy living #injuries #lupus #meditation #pain #pain management #truth #wellness #Yoga #yoga teacher

[puppyeared]

i have an idea for a character design but what animals are usually associated with medicine??? the most common answer i got was snake, but i also thought of lab rats/mice, rabbits etc

#snake has the longest history with medicine especially since its shown on the rod of asclepius and the myths around venom #i also didnt know this but their shedding skin is referenced as symbols of rebirth and growth while their appearance resembles an #umbilical cord which gives it a really strong connection to health in some cultures.. although if i had to think abt modern medicine and #pharmacies the first thing i think of is white lab mice like pinky and the brain. for some reason i also thought of rabbits #bc of how its used for anti animal testing logos but thats more loose. however i did learn that the jade rabbit is shown to #use a pestle and mortar to create medicine in some stories so that could work...???? but its not as well known i think #i also thought of possums but that was more of an irony thing. same for bats but both are ironically really resistant to disease and act #as carriers. a death symbol like vultures or ravens/crows might work with a plague doctors mask but i feel #like that isnt the vibe im going for. black cat would be interesting considering superstition but im also on the fence abt that #actually what else is associated with medicine?? normally its stuff like pills crosses bandaids syringes etc #doctors coats and gloves.. especially plague doctor masks or medical masks in general but not much else huh #hand sanitizer and tissues.. pill bottles... blue nurse uniforms.. gauze and casts with signed names... hmmmm/......... #nurse dresses..??? sure?? i also see scalpels and knives but thats more for like. horror doctors for scary stories #im going for cute maybe even regular ass doctor vibe. like harvey sdv. or tony tony chopper #yapping

[chronic-lee-lizard]

If I find out that my mother’s refusal to let me use crutches is causing (physical) damage to my body I might go beast mode. 👿👿

#chronic illness #chronically ill teen #autoimmune #chronically ill #dynamic disability #hypermobile spectrum disorder #actually disabled #disabled #mixed connective tissue disease #connective tissue disorder #disability #ambulatory cane user #cane user #walking cane #cane #forearm crutch #ambulatory mobility aid user #mobility aid user

[my-hyucking-spoons]

It's pretty ironic being an aspiring tattoo artist, while my own corpse heals badly with every tattoo i get

#if i got a penny for every tattoo that doesnt have a scar on it id still be as broke as i am now #ehlers danlos syndrome #connective tissue disease #chronic illness #like damn #i can fix up the parts of the tattoo that get demaged in healing but then id risk it getting screwed again

[crimeronan]

I TESTED POSITIVE FOR LUPUS ANTIBODIES

#THIS IS AMAZING FUCKING NEWS LIKE IT SUCKS TO HAVE LUPUS BUT I THOUGHT ALL MY SCREENS WERE NEGATIVE #TURNS OUT THEY JUST HADNT PROCESSED ALL OF THE RESULTS YET #I CAN GET REAL EMERGENCY MEDICAL CARE AND GET ON MAINTENANCE MEDICATION NOW #the specific antibody is generally either for lupus or mixed connective tissue disease or systemic sclerosis or a combo #my result was 80x the lowest normal range 10x the highest normal range. #because it's not 100% conclusive i'll have to see what diagnosis the rheumatologist gives me but regardless #this means i've tested positive for systemic disease and that steroid treatment makes the most sense regardless of my specific diagnosis #AAAAAAAAAAAA I FEEL LIKE I'M GONNA PASS OUT I'M SO EXCITED AND RELIEVED #i've really felt like i'm gonna die. like really really really.... #autoimmune tag

[scorchedmazes]

me: i’m going to work on some writing and drawing today

my joints in my fingers: no tf you’re not

#rheumatoid arthritis #lupus #mixed connective tissue disease #but hey i tried #me being surprised when my chronic illness impacts my life 🤡 #ari talks