I did not check my meds and was out in the sun for a very short time and got burnt to a crisp.

I didn’t even think to check until my ma brought it up and was shocked to see that it was an issue with so many of my meds!

Learn from my mistake and be extra safe. Wear/re-apply good sun screen, wear sun shirts, and/or stay in the shade!

Day 2 - My type of EDS/HSD

I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), formerly know as type III, which is a type of connective tissue disorder. Out of the 13 types of Ehlers-Danlos Syndrome, hypermobile is thought to be the most common.

hEDS is genetic and can be inherited from a parent with the faulty gene or a person can be born with a new mutation of the gene. There is no genetic test for hEDS, it is diagnosed through looking at joint hypermobility and signs of faulty connective tissue in the body, as well as looking at family history and MSK problems such as chronic pain and dislocations.

There are also lots of other symptoms and disorders which don’t form part of the criteria but are often found in people with EDS. These include orthostatic tachycardia, digestive disorders, pelvic and bladder dysfunction, and anxiety disorders. These symptoms often cause more problems and affect a persons quality of life more than the joint hypermobility.

https://www.justgiving.com/fundraising/pamela-kellyzebra

So I have the COVID-19. On top Of My Cystic Fibrosis and Ehlers-Danlos Syndrome and Dysautonomia, and Mastocytosis, etc. Plus! A new and exciting heart condition that can also give me a heart attack whenever it wants. I'm on meds from my cardio and more from my Pulmonologist. They kicked me out of ER cause my normal daily symptoms of Cystic Fibrosis are the same as COVID-19 symptoms.

Please help signal boost is you can! You never know who can help or who will share!

This is why I have had a viral sinus infection that never got better after five rounds of antibiotics and steroids. No one should need that much antibiotics within nine months.

Basically everything that was being saved for important medical things is all gone for this emergency and then all of any other pittance money I have during this time is gone too.

I have to do my own nursing and I need help everyday to just remmwber what I need to do.

This is the worst I've felt mentally and physically in so long. Especially when I thought I was actively dying the other day. Luckily they didn't have to use the paddles and they said I was so calm and they couldn't understand why. My fiancé explained that I have these issues before and I've done my best to control it with meditation and staying calm.

Music has saved me and so have friends and family.

Thanks to my tumblr community who still remembers and cares about me!

I remember and care about y'all!

🧡🤗😷

So I've been getting back into art recently and I've realised just how much my hands have deteriorated over the last few years, which is causing a lot of feelings.

On one hand, my brain tells me my hands are broken, useless, defective. They drop things, dislocate at the wrist, knuckles and fingers, they hyperextend, tire easily, and lock. It causes so much pain that sometimes I can't move my fingers

But on the other hand, I'm beginning to accept my hands for what they are. They may be broken, but they can still create. They may not function the way they used to, the way they should, but that doesnt make them useless. I can still write and type and draw, the process just looks a little different now, and that's okay

Zebra Rising 🦓🖤💚💙💜 || 📸 @deepvisionsphotography Edit & MUA @dna.witch Model @dna.witch #deepvisionsphotography #zebrastrong #ehlersdanlosawareness #edsawareness #disabledmodel #travelingmodel