UPDATE (2/5/2024)
I have to Up the goal. I didn’t want to have to but my trip to Seattle was 1500.
I am receiving treatment on April 26th in Detroit that will cost 1,680
it’s a treatment that treats rare neurological conditions & tissue healing
Before I dive into this story, which is scary, traumatizing & surprising (heads up!)
Here are some videos at the bottom about my condition, all I’ve had to deal with, the treatment, ect.
I did want to say THANK YOU!!! We reached our 1st initial goal.
As I’ve mentioned a few times before I may have to raise the goal by a little because I had to fly to Seattle to visit a doctor in January. If I don’t fix this problem I may need more surgery.
And that is terrifying in itself as well as expensive. But i have a lot of internal damage & collapse.
The doctor I saw in Seattle however made it seem more reasonable, safe, approachable & good. It’s very scary but it’s a step in the right direction. And seeing all the support has given me courage to. And that maybe just MAYBE my Health & Happiness Matter.
My Fight with SSDI – ENS 😷 Court Case
https://youtu.be/vKDXmJz2YYw
My Experience w/ “Empty Nose Syndrome” & Healthcare system
Another Video Describing How Treatment Is:
https://youtu.be/HXpLA3TWO74
Health Update (I made need surgery) + more treatment
https://youtu.be/wjHKah7hpqM
My name is Melody, most call me Lexa.
I’m a Hip-Hop Artist & go by Lexa Terrestrial.
I’ve worked so hard at my craft and doing what I love which is creating.
Right as I was in a good place, I had a surgery that I thought would help but instead it almost killed me. I now suffer the consequences 5 yrs later – physically, mentally & spiritually.
A doctor unwarrantedly & aggressively botched my sinuses without telling me. I was experiencing very scary complications after, such as pain, bleeding, not being able to breathe, sleep, passing out behind the wheel of my car, getting sick all of the time. I had no idea what was going on, and went to see many different types of doctors and specialists. Ultimately I figured out that I had a very rare & strange condition called “empty Nose Syndrome”, Which tears lives apart, completely & even kills.
It is a manmade disease caused by medical malpractice & what it feels like essentially is whenever you go to take a breath in, it feels as if you didn’t take a breath, bc the nerves in your nose responsible for sensing & warming airflow have been damaged. Every time I went to take a breath in, not only did it feel like I was suffocating, but it felt like dry, burning needles were going down my throat. On the inside I felt like I wanted to crawl out of my own skin. On the outside I tried to hold it together but things were absolutely backwards. I couldn’t sleep for days & ended up sick and in the emergency room on a few occasions. I had to drop out of school, I could barely finish reading a sentence. It was the scariest, darkest period of my life & I had overcome some of the most terrifying things at a young age, including battling an eating disorder at the age of 8, which I had to be hospitalized for. I have PTSD from this & even have a hard time talking about it in such detail. I try to avoid going into detail. But I feel its necessary.
As I sit here & write this, I have 2 Q-tips in my nose, which may sound funny but I have to wear them 98% of the day, or some type of breathing device, sometimes even when I am sleeping.
The fact that I am able to type this or even sleep is good. The fact that I am EVEN STILL ALIVE is a miracle. Not being able to do what I loved, let alone even minimal normal stuff, especially the pain, caused me to attempt to take my own life which i was prepared to do. At that point I had been getting treatment for this illness which was painful (consisting of needles that go into your sinus cavity) expensive & considered experimental so insurance companies wouldn’t have o cover it, even though stem cells are frequently used in medical treatments including the Covid Vaccine.
The treatments only do so much, and at that point I was trying everything. Not to mention all of this was expensive & I was unable to work a normal job.
I am still unable to & get by off of very little.
I had gone to court after other people & doctors told me I had a case & was the victim of medical malpractice & negligence. However our court system is not about right & wrong it’s about who has the most money. I was stuck representing myself bc every lawyer said it would be too difficult to win despite all the medical literature I had. Then Covid came & then the litigation period was up. I then had to apply for Disability. That was 2020, we are now in 2023 & It’s been my 3rd appeal and I AM STILL WAITING for SSDI.
I used to be doing so well. People are still surprised at what I am able to do, but my health is suffering, and there are many days I feel like a zombie.
I no longer am able to live a normal life (although what is normal?)By that I mean I am no longer able to work a normal job or even go outside, or have normal relationships.
I mourned my own life for 2 1/2 Years While still being alive. I was no longer alive.
Although I am extremely strong, bright & have become an advocate & resource for the many others battling this or who are newly diagnosed.
Having this condition and not being able to breathe, has caused sm other health issues,. Today I saw an ENT who told me I’m probably going to need to get maxillary facial surgery. I’ve already had wires put in my jaw. My body is in a lot of pain bc of this & I am sick a lot bc of this.
And ironically the whole reason I’m sick in the first place is because of a doctor. 😂🙏🏼
Off the bat just to get a small treatment from my doctor who specializes in #emptynosesyndrome is almost $2,000K & thats cheap compared to most. He works out of Ohio & has been treating patients from all over the world who suffer with this.
Our healthcare system is inexcusable. And also surprisingly the 3rd Leading cause of Death in the U.S – Medical Malpractice! Yes that’s correct, Medical Malpractice is one of the top leading causes of death & i’m surprised by how many people I talk to who know someone who has had a traumatizing experience or been injured by a doctor.
My condition has improved thanks to my efforts with trying red light therapy & with the help of Dr. Das in Ohio. However it is likely I will need to have a surgery to fix the nasal valve collapse & other damage the previous surgeon (Dr. Naderi) caused. However it is a huge risk with all I’ve had to overcome, I don’t want to make this situation worse or I will end up dead so if I do it will likely be very expensive, difficult & with a highly specialized surgeon.
I am in need of raising money to cover this procedure!!! AND I hope to raise funds for the possible surgery to help support me so I am able to heal in an already stressful situation.
I have learned a lot from all of this these past 5 years. I am also in the process of manufacturing my 3rd prototype for a breathing device that will help people with complex nasal illnesses that looks aesthetic.
I am praying I can put all of my problems behind me some day very soon.
With this donation I can.