Just posted a photo instagram.com/p/CanMCOZObXk/…

Just posted a photo instagram.com/p/Ca5vXJaMwm_/…

Just posted a photo instagram.com/p/CbYnHi4MCAC/…

Being argued with regarding medical equipment carry on rules is not acceptable…my stating my CLEARLY identified bag as medical equipment should be enough. Having my carry on removed from me because the agent isn’t listening? Unacceptable.. americanair #disabled

Huge shout out to Mohammed Ruzieh, MD and his office for working to get my Corlanor approved and covered by insurance! Thank you for caring for your patients the way you do! #pots #Dysautonomia

Gastroparesis Awareness Project! Let’s raise some noise and bring awareness to this debilitating condition! #gastroparesis #gastroparesisawareness #chronicillness

This is the mask I wear, & medical staff STILL talk too low, or in a way I can’t hear them. I have to repeatedly ask them to repeat themselves. It’s mind blowing with this visual reminder,they still put no effort into communicating. #hearingimpaired #chronicillness #hardofhearing

Today my amazing surgical team at UF Health performed a parastomal hernia repair. I was blessed with having two amazing surgeons, Dr. Al-Mansour & Dr. Read. I was not prepared for the pain but they were amazing at setting a plan before SX. #hernia #EhlersDanlosSyndrome #surgery

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Surgery…. livingwithdys.com/2022/08/05/sur…

Just posted a photo instagram.com/p/CjQRAzCOz7B/…

We hate that we have to issue this statement, but it is imperative that we do. #gastroparesis, #feedingtube #EnteralNutrition #ostomy #intravenoustherapy #feedingtubeawareness #medicalsupplies

Heading to attend an amazing workshop for autoimmune patient leaders! So excited to learn more and connect with others. Thanks so much Lilly Stairs for your hard work in putting this together! #RAELW22 #autoimmunedisease #ChronicKidneyDisease #thinbasementmembrane

I will never understand making TikTok’s in public bathrooms. How is that normal, and not an invasion of privacy? #privacy, #daveandbusters

I am enough….so are you. livingwithdys.com/i-am-enough-so…

Sharing my story of open heart surgery. livingwithdys.com/2024/05/27/hea…

Finding cardiac care has been frustrating. I have to travel outside of the state to Johns Hopkins or Cleveland Clinic for care. If you can donate, to help me travel to appointments, I'd be. so grateful. gofund.me/50592149 #chronicillness #cardiaccare BIOTRONIK US

Being left with a Biotronik pacemaker lead fragment in your heart, and absolutely nothing monitoring your heart, no pacemaker has been scary. Having to travel out of state for care is financially and physically draining. BIOTRONIK US #cardiaccare #chronicillness #patientsafety

Having to travel out of state for specialized cardiac care because of complications and dismissiveness isn't easy. It's costly. Please look at my gofundme and share or donate if you can help! #patientsafety #cardiachealth #PatientCare gofund.me/14a9204f

It's been six months since my emergency open heart surgery. Of complications,lack of answers, dismissiveness from physicians. Where is accountability?Where is transparency. It's crucial in healthcare. Read my new post to see all that's happened: livingwithdys.com/2024/08/14/six… #openheart