Hi, I’m Amanda, I didn’t know to put on the goal line. I’m here today because of faulty genetics. Mom if you ever see this, I love you. But the genetic thing is true. I am a very rare model but that’s because our maker and saw what he had made. And yells man I screwed the goose this model. Then he beat the crap out of the mold and burned it in effigy. Sorry, that got a little dark. Anyway, back to my rare parts. I have more than one rare disorder. Which makes life very hard on? Then we add in I live in Dodge City Kansas the doctors don’t know what to do with me.
I’m going to list everything I have been diagnose with.
1. This is the one that has me most concerning. Thoracic Outlet Syndrome there are fewer than 200,000 a cases a year in the United Staes. The thoracic outlet is the ring formed by the top ribs, just below the collarbone. In my case the issue is another rare thing because drum roll. I have bilateral cervical ribs.
A. Cervical rib: cervical rib is an extra rib that grows from the cervical spine-the neck part of the spine. Between 1 and 3 percent of the population has cervical rib, which may grow on one side or both sides. Having a cervical increase, the chance of nerve or blood vessel compression between the ribs or its muscle and ligamentous connections sharing this small space. A small percentage of people small percentage ‘me’ people with a cervical outlet syndrome. Many people with cervical ribs never know it. I guess I’m not one of them.
For this syndrome the closest vascular surgeon is in Dallas Texas. Who I was able to get in to see next month on the 20. Which is wonderful I just have no way to get there. I don’t have a car and my boyfriend’s car is on its last leg. This won’t be my only time I have to travel for appointments. My primary doctor is a hour away. That is why I marked that box. Even if we could raise enough for us to rent a car. Paying for a house or shelter because I can’t afford to rent a hotel for at least 2 nights.
The reason I marked buying food is because it’s hard to take care of those needs when traveling. Especially since my partner has Celiac Disease is a serious autoimmune disorder triggered by consuming gluten. I had no idea that gluten is in everything. Anyway, because he is my driver license Chad is my muscle and driver. We have been through hell together. Now that we have a few answers for him it is my turn of course he will never be healthy. It would be wonderful if we get someone who has treated Celiac Disease before. Us both having health issues makes it hard sometimes is very hard to be sick. Especially since everything gluten free is very expensive. Our dream was to get a little RV that way If I have a appointment that was hours away a can be comfortable. The summer before last I had I was able to travel without my normal pain because I could lay down when I needed to. The if we need to go into a town. We could get a little used car to pull behind the RV. But that is just a dream.
Sorry I went off on a tangent. I wanted to share the rest of me diagnosed with.
1. Ehlers-Danlos Syndrome is a group of disorder that affects connective tissue supporting the skin, bones blood vessels and other organ. It affects me by having my large joints dislocation. I’m pretty lucky though I can put my joints back in myself. There are a lot of people have to go to the ER to put them back in. Heck just last year I had to surgery on my right shoulder because of damage done from dislocating my shoulder. That was my second surgery on that shoulder from damage done because both of my elbows are a permanently dislocated elbow. Which means the joint isn’t able to rotate from the elbows. All the movement comes from the shoulder causing more damage. I also I had surgery on my right foot this was the third surgery on my right foot. I was born with a clubbed foot, so I had two surgeries to correct that issue. This worked for a little while. But I ended getting my ankle fused because my arthritis was too bad, so they went in and fixed it. I got some new bling out of it three screws and one staple. With what they charge it should at least be 925 sterling silver.
It has affected my organs too. My digestive system doesn’t work right at all. I was diagnosed IBS at 11. I didn’t find out how much damage until I was in my early 20. My teeth had started losing my around 21. The cause of that is the lower esophageal sphincter does not close correctly. That allows stomach acid to go into the esophagus. Causing damage to esophagus in my case it was going all the way into my esophagus into my mouth. Which caused my teeth to rot out. By 24 I was in dentures I still have the same pair. They are falling apart though you are supposed to get new one every 5 years, but I didn’t have the money to. My insurance won’t cover it. It’s not like having teeth affects your health. Sorry got a little distracted. Ok it affects me by causing me to grow ovarian cysts that got to be the size of grapefruit. I had multiple surgery because of this issue. By the age of 25 I had a total hysterectomy I was very lucky that I had already had my girls. It also affects my heart currently my aorta is dilatation Which means a one of my aortas in my heart is getting dilated. I had to start a medication to slow my heartbeat down. It would be awesome if I could find a doctor that specializes in Ehlers-Danlos Syndrome. Heck, I haven’t even met someone with Ehlers-Danlos Syndrome before.
Chari Malformations type 1 occurs when the section of your skull containing a part of your brain is to small or is deformed thus putting pressure and crowding the brain. Basically, my brain was just too darn big .
Scoliosis is just a curve in my spine.
Post-traumatic stress disorder (PTSD) is a disorder in which a person has difficulty recovering after experiencing or witnessing a terrifying event. Don’t want to go there.
Sciatic ia pain radiating along the sciatic nerve.
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood.
Insomnia
Pain is something that happens daily has since I was little but as the As I have gotten older it has made it harder. The pain increases there are products out there that help but I can’t afford them. It can be as simple as a pregnancy pillow because it supports the body better.
I just want to get to see my daughters get married and see my grandbaby grow up. That’s why I’m asking for help because I really am scared if I don’t start seeing the right doctors that know I will die. But even before that I want to have some quality-of-life. I don’t any right now it’s just a lot of worrying. The closest doctors that treat EDS is in Denver Colorado. I think that is all for now. Thank you for taking the time to read this.