Lexa Terrestrial/Mac Miller Tribute + ENS Benefit
August 23rd, Pittsburgh, PA
https://www.facebook.com/events/1491790044773838
My friends are putting together an event for me.
I’ve dealt with this disease for 6 years. Living in chronic paralyzing pain.
I haven’t thrown a benefit or event for it. But I’m glad I am.
Anyone & everyone whose ever known me IS WELCOME to come.
This in a sense may be the most important event I hold.
SURGERY/TREATMENT UPDATE:
I will likely need to get surgery to restore the nasal cavity to its normal structure.
I have to get a CT scan & MRI.
Then I will be seeing Dr. Jang, an ENS & Nose specialist in Korea!!!!!
He is not only one of the top surgeons but does operations and treatments for ENS patients.
Not to mention since their healthcare system isn’t entirely based on Capitalism it will be Better & More Affordable. The doctors there (overseas) are genuinely helping because they want to make a difference.. not just doing the same old thing to skirt by.
Much of the ENS Research on Airflow patterns & Studies HAVE COME FROM ASIA:
https://www.sciencedirect.com/science/article/abs/pii/S1876107024002530?fbclid=IwY2xjawEUw0hleHRuA2FlbQIxMAABHecKYBalZucM_S92OwRtypUeO_mEXre7nqBcUS3k2jtcoW54FixKas3dGw_aem_8E6DDRW4oXDMRCMifewsdQ
https://www.sciencedirect.com/science/article/abs/pii/S003066650900019X
So if I do anything surgically to repair the nasal valve or remove damaged tissue it will be with him. I am not sure about surgical turbinate implants but I will seek his advice.
Dr. Jang, like me, has made Portable Nasal Implants based on the 3D Geometry of the Nasal Cavity. From the consult process to more consults & tests to surgery to healing will take a long time. It’s either that or die though. And little things & people have been keeping me going.
Update (4/30/2024)
Medical Science Behind ENS:
https://youtu.be/C50JWQkXr3s?si=0mdbT_kpnUAgqJbE
(TRIGGER WARNING!)
May 1st is my Court date in what’s been a 4 year battle with the US judicial & healthcare system.
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.