"I lost around 55 pounds in 2 months..." Mariana's turbulent journey in the healthcare system

My name is Mariana and I started my medical journey when I was 5.

At that age, I started having extremely high fevers that could not be explained. I would get test and tests done back to back. I would have to go to hospital any were from an hour to 6 hours away from my town. I had to go to many doctors and yet they were never able to figure it out. By the age of 8 I got told I had 4 different illnesses but then they said it wasn’t those.

So all we got out of it was constant confusion. After that I was on medication and my fevers started to go down. But even though I didn’t have fevers I continued to feel unwell. I always had a headache, felt nauseous, and dizzy and just overall tired.

Then when I was 10 I kept getting dizzy spells and these didn't go away. I developed Tourette’s, passing out spells, seizures, stomach problems, chronic fatigue, and chronic migraines. At one point I was unable to drink or eat anything and it was terrifying. Anything I took in by mouth I would throw up. I lost around 55 pounds in 2 months. I had to get a NG tube placed that went down to my small intestine. That tube was how I was able to get my nutrients. I also have chronic migraines and have had a constant migraine that hasn't fully gone away in 2 years. The migraine only calms down but is never gone. I have had to get 4 injections done into the back of my head. I have also had to be admitted 3 times to get an infusion that lasted 5 days to help with the pain. My migraine has gotten so bad that it created so much pressure on my nerves in my brain. Which made me have a semi paralysis on the right side of my body.

Through this journey, I have constantly felt like I was ignored and dismissed by the doctors. I have had to advocate for myself and for my treatments and my plans. Though I have had to yell for help so many times I am so happy to say I have been able to find doctors who have finally been helpful to me. I also want to say you are strong and even though you might be going through hell to push through it. You are loved and cared for! Never forget that! Also never forget to advocate for yourself!

We need to hear your voice in this world. 

- Mariana Llanes