Rare Disease Talk

01/09/2023

https://lexiwrites.com/2023/09/a-nurses-love/

Daily inspiration, Personal Blog A Nurse’s LOVE September 1, 2023 / LoveLove is a strong word. Many people skip over it like a pebble dancing across a lake. Love is a difficult thing to come by in its purest and truest forms, but in rare cases it does exist. Sometimes we see love in places we p.....

27/08/2023

On October, 20th, 2022, I was diagnosed with a severe dysphasia that left me so malnourished I couldn’t walk, talk, or do really anything. I went on hospice at the age of 23 and was bed bound as I had no energy to swallow any food, was starving and was on IV nutrition as my feeding tube stopped working. I suffer from a called meaning life has always been harder, but never like it was on . Even hospice had trouble making me comfortable during these horrible days. We found a clinic in Sri Lanka that specializes in and I was able to get a lot of my treated and figured out. Today I am 23 and no longer on hospice, but they expect me to live. I couldn’t even walk when I got here (this is a photo of my husband carrying me inside), but now I’m walking on my own.

26/08/2023

My story starts as anyone’s. My journey is different than anyone’s. You look at me and you see a normal girl, but under all of it is the bravery that keeps my heart pumping. In January of 2023 I went on hospice because I was expected to die. Now I am doing much better and am receiving treatments that have never been tried in my country before (The United States Of America). I see this X-ray and I think wow I really am the girl who lived.

10/09/2022

When I close my eyes, I grow wings and fly. When I open them, my wings and my legs are gone, but I still have wonderful memories of my adventures out there. This is my bed, this is my life, but one thing will always stay the same… I have places to be and I have people to see.

When I close my eyes: By Lexi Uslu When I close my eyes, I grow wings and fly; I use my wings to fly towards the sky. I abandon my reality of chronic illness as I soar towards freedom. Tonight, I am safe in my bed – away from it all… Away from my dreaded wheelchair... Continue Reading »

25/05/2022

08/05/2022

Have you ever seen the show Greys Anatomy?
I have.
I used to love that show when I was younger.
The thing about that show is doctors are so passionate and motivated in finding answers for their patients.
Any rare disease patient knows this is not the case in today’s healthcare system.
It’s true that TV is better than reality, but since COVID our healthcare system has fallen apart and our own healthcare system has become a health hazard.
I had 3 swallow studies that all showed I aspirate on liquid. Each study was worse than the one before. I explained again and again to the doctors that I could not swallow pills because I would choke. They had a nurse come in my room, chop pills into 1/5 and place them in pudding. I looked at that spoon with fear in my eyes because I knew what was going to happen. I tried to swallow and then I couldn’t breathe. I gagged until I vomited and aspirated on my vomit then my chest was on fire from all the stomach acid that didn’t belong. I coughed and coughed.
They didn’t believe that I had actually choked so they did another swallow study. The studies results were horrific. I aspirated on every consistency and it was determined it was not safe to try solid food. The images below show how the liquid goes in my trachea instead of my esophagus.
After the swallow study I didn’t eat and they no longer asked me to swallow pills, but I did develop a pneumonia that was “likely due to aspiration”.
Those doctors went home that night and didn’t even think about how hard it was for me to breathe after I swallowed those pills. Those doctors will never think of this story again, but I am at home with pneumonia. I tried to refuse oral medications, but it was the only medication they would give me.
Our healthcare system is in fact a hazard to our health and patients need to be listened to and represented. I tried to stand up for myself but it didn’t matter.
Our healthcare system needs checks and balances. This could have been a lot worse than pneumonia.