sarahbeara113

[sarahbeara113]

Things we don’t always talk about with EDS. How fragile the skin is. My mouth is torn at the corner and only continues to tear the more I eat and talk.

#ehlerdanlos #eds #chronically ill

[sarahbeara113]

Reminder to all my chronically ill friends this summer: check your meds! Photosensitivity is a common side effect.

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!

Stay safe this summer friends ❤️

#chronically ill #chronic illness #edsawareness #spoonie #fibromyalgia #edsupport #ehlers danlos syndrome #cripple life

[sarahbeara113]

[sarahbeara113]

What having MCAS is like. Had a bad day the other day no worries I’m fine) but my own tear cause me to break out in hives.

Proceeded to cry facing the floor 😂

#chronically ill #chronic illness #spoonie #mast cell activation syndrome #mcas

[sarahbeara113]

I have POTS. Usually I can feel myself about to faint and sit down so I don’t lose consciousness. Well today It came out of nowhere and I fainted. Luckily my bf caught me and I went down easy. I came to with my dog jumping on me.

He likely just thought I was playing, but he did bring me back quickly. 😂

I was exhausted after and took a big nap and he slept right at my side (apologies for the unflattering pic). So happy this boy came into my life.

#chronically ill #chronic illness #spoonie #potsie #pots #postural orthostatic tachycardia syndrome

[sarahbeara113]

I failed chem. Almost twice. Failed math, almost failed many biology classes (even with the help of study groups, 1 on 1 tutoring, and meeting with professors with help.

I’m working with stems cells now. STEM is hard. Especially when you’re disabled.

Many things are more challenging when you’re disabled. But please don’t give up. You’ll find your place. I never thought I would, but here we are.

[sarahbeara113]

EDS psa of the day. While EDS is a genetic condition that causes collagen deficiency, taking supplemental collagen will not improve EDS. It can't change the genetic code that causes us to produce faulty collagen. And collagen is a part of our skin, bones, organs, joints, eyes, ears, etc. So it can't change or improve the collagen that makes up our organs and joints. There is no evidence that taking collagen will help with EDS and doctors don't recommend it as a treatment for EDS. Best you'll do by taking it is make your hair and skin nicer!

[sarahbeara113]

I’ve been really depressed lately so I want to focus on the positives. As a disabled woman, I accomplished so much in college. I was an RA, the secretary of swing club, historian of biology club, recruitment chair of Student ambassadors, invertebrate car lead of Animal house, and involved in 3 research projects. 2 of those, I was a lead. I lead fossil taxonomy/phylogeny of grant count fossils as well as being the lead researcher of the thermal ecology of Ophidiomyces ophidiicola.

Today I work with stem cells with the goal of creating medications for cancer and genetic conditions.

I have worked my ass off to get where I am and the path has been more difficult being disabled, but I want others like me to know the incredible things they can accomplish. That said, if you are disabled and you are just living, that itself is a huge accomplishment.

[sarahbeara113]

Looking for recommendations to keep joints from dislocating at night. I had double shoulder surgery which fix’s that issues (and I also use a giant stuffed animal to support my arms) but still wake up with subluxed/dislocated, wrists, knees, and ankles.

[sarahbeara113]

Psa for truck drivers: please do not pull your truck up all the way into the sidewalk like this:

It blocks the pathway for people who use mobility aids like wheelchairs, walkers, canes, etc like me. We can't get through and in this case it was right at my apartment door so I couldn't get through to the door without handing my mobility aid off which is dangerous. So please keep this in mind if you drive a truck!

[sarahbeara113]

I’ve always been a huge disability advocate and have spoken out about people comparing disabilities, saying others have it worse and that isn’t okay.

Now, I’ve also been donating blood lately because of the blood crisis despite how difficult it is on my body for the days following. I’ve been advised not to donate, yet have continued to do it.

My justification was that I was saving lives, allowing people to get treatment that was needed, but my co-worker saw the tremendous toll it took on me and said something I’ve thought about a lot.

“When did your health become less important than others?”

This has been such a battle for me. I know I am helping others, but I am hurting myself so badly in the process. But others have it so worse.

[sarahbeara113]

Hey friends. Looking for advice. There are some days when I have a high pain day, I don’t have the energy to brush my teeth and crawl into bed at 6. Does anyone have any suggestions/substitutes for brushing teeth or anything that would make it easier? Maybe something I could even do in bed to still help maintain my teeth?

[sarahbeara113]

My doctor after hearing me describe my symptoms

[sarahbeara113]

It’s sad… just sad that my pain medication brings my pain down to a 4-6/10. And it so hard to appreciate it until I am left without it. Due to shipping issues, I was without it for 2+ weeks. My pain was constantly at 6-9 pain. There was a day when I truly thought I wasn’t going to make it because the pain was so bad.

I am so thankful for this medication and I recognize that it helps a lot, but at the same time, it kills me that the minimum pain I will ever reach is a 4 *with medication*

[sarahbeara113]

Does anyone had advice on… I guess sitting normal? My pt told me to be aware of my body and I am really working on it, but there are so many things that are “comfy” to me but not EDS safe. How do I fix/self correct

[sarahbeara113]

When I first started dealing with my medical issues, I know the burden was hard on my parents. My dad innocently mad a comment about how I cost a lot of money. It affected me more than Id like to admit.

But my dad has been amazing. Anything I need, he is behind me 100%. When I messaged my parents today; I was hoping to get an opinion and if they thought it was worth it, I planned to ask them for some money for my birthday so that I could afford this. His response made me tear up.

My parents don’t always understand what I go through, but I know they would do anything for me and anything to know I had some pain relief. I am forever grateful for them.

[sarahbeara113]

My hyoid has been subluxing a lot lately. I remember when it first happened and I was so scared. And then the next time it happend, I texted my ma. I was walking out to my car to drive and get myself a freezie drink and right then, my parents pulled up in the driveway. My ma got out of the car and handed me a freezie Bc I texted her that it had subluxed again and it really hurt ❤️