Hello everyone! My name is tow if you don’t already know me. For the past 6 or so years I have been battling my body and so far I’ve won the battle but I fear I may not with the war. I have a genetic disorder called Familial Hypertriglyceridemia and Familial Hypercholesterolemia.
It showed up when I was about 22 and has ruined my life. I had pancreatitis twice, which lead to me getting a plasma transfusion. For those of you who don’t know, they stick an IV down your neck straight into your heart. You can see this in one of the photos I’ve uploaded.
The first time they did they it got stuck inside my neck and had to yank it out. There were complications. I have PTSD from this and cannot handle needles near my neck. this causes complications when I’m in need of treatment for my back. I have arthritis and a few building disks due to strain and overusing my body when I was younger fighting in MMA with my dad.
the first same time I had pancreatitis was the same time I had Diabetic ketoacidosis. I was forced to stay in the ICU for over a week with no food or water. They would give me an IV drip for fluids and let me wet my mouth with a small wet sponge.
after I had recovered the first time I thought if I just took the medicine I was told, lost some weight, and changed my life style I could live a normal life. I was wrong.
I did everything they told me to do and I needed up having severe pain in my stomach again. A very familiar pain. So I went to the hospital and was diagnosed again with pancreatitis. Same treatment as last time. Spent time in the ICU no food or water and a plasma transfusion to bring my leveled from 2000 down to 709. The normal range for cholesterol and triglycerides are usually 100-150. I was very very sick and still am.
the medication wasn’t working. Nothing was helping and the I was told by many doctors people with my disorder as bad as it is would most likely not see my 40’s. My heart simply cannot handle the stress my body is putting itself through.
a few years pass and I’m on Ozempic to help control my cholesterol, sugars, and weight. I lost around 100 lbs the first year I was in it. At this time I was seeing a cardiologist who diagnosed me with POTS. This means it’s very difficult for me to run, stand up, walk fast, or anything physical without passing out. I have fainting/dizzy spells nearly everyday.
the fairly good news was that the Ozempic seemed to be working alongside another medication called Repatha meant to help lower you LDC levels so your heart can function properly. This was great news to hear/feel. I have been doing everything I can to get my health better and I finally felt as if I had a chance to live a normal life. Regardless of the grueling side effects all those medications give me. Unfortunately, this was not the case.
the Ozempic has lead my stomach to stop working. I have a paralyzed stomach now, also known as Gastroparesis. There’s no cure. There barley treatment. This causes very intense stomach pain and cramping in my abdomen area that lands me in the hospital multiple times a year just to treat the pain. I can’t stop the Ozempic because it’s the only medication that has worked to lower my cholesterol to a more controlled level. If I stop the Ozempic my cholesterol and triglycerides will overtake my body and cause havac on me. This could lead to death very easily. But if I continue treatment then I am dealing with crippling stomach pains everyday, every hour, every minuet, every second I live with this.
I know this is a lot to read, but if you’ve read this far, I can explain why I’m in need of money. I hate that I have to even do this. I lost my job because I have had to many doctor appointments/procedures that have caused me to call out of work/leave early. I worked with ST. Lucie county and they’re excuse for letting me go was literally I had to many doctors appointments. This was not the first job to do this to me. I came to the realization that ontop of my physical health, my mental health has taken a hit very hard and it’s time I applied for disability.
after speaking with a wonderful lawyer I have a very solid case for SSDI or longer term disability. This issue right now is it takes MONTHS for SSDI to go through. My fiance and I were supposed to get married October. 11th this year. We had to push off the wedding multiple times due to my medical and financial issues. I don’t have a mother, and my father has helped beyond what I can ask him anymore. My fiance works 12 hours a day just to make enough to meet ends but it isn’t enough to pay for my doctors appointments and procedures.
im asking for help so I can atleast pay to see my doctors which I have 6 different doctors, all of which I see atleast once a month and the copays are $60 each visit since they’re specialist. Thankfully I am still under my father’s insurance and have the privilege to use that. But without a job or money, it doesn’t matter. I can’t even afford the copay.
if you’ve read this far it means the world to me. The people I’m close to know I’m sick but don’t k know how severe it is and don’t know what kind of mental toll it’s taken on me. This is my last resort to make some kind of money to help me keep afloat. I doubt I anyone will donate anything but if you could please share this it would mean the world to me.
thank you so much for listening to me share my story. I invite anyone to message me if the have a similar story or have any advice on government programs that could possibly help aid my situation. Lots of love
-Nyle ❤️❤️❤️
Organizer
Brianna Sanders
Organizer
Port Saint Lucie, FL