I told you I was going to get personal. I wouldn’t lie to you… This question is hard for me to answer. I am one of the fortunate ones. I don’t have to many other illnesses besides my obvious multiple dislocations and continuous pain. (Hang on a minute while I go knock on wood.) I am very blessed in that aspect. Other than my EDS, I have a chronic psoriasis, I’m lactose intolerant, and some allergies (thanks dad -_- ). With EDS and psoriasis my immune system is kind of, how do you say, nonexistent. So, I am constantly getting some sort of bug. Even though I’m constantly sick, I am one of the lucky ones to have few complications. As far as what my EDS effects, I have currently dislocated many body parts. I’ll list them from head to toes. Right shoulder dislocation, left shoulder subluxation, right thumb dislocation, left thumb dislocation, right hip subluxation, left hip subluxation, right knee dislocation, left knee dislocation, right big toe dislocation, left big toe dislocation. For those of us keeping count, that’s 7 dislocations, 3 subluxations and counting. Yup. That’s a lot. And yet, I’m one of the lucky ones. For you guys who are still wondering what a subluxation is, it’s when a body part moves from its designated spot but not far enough to be completely dislocated. Don’t be fooled by the way it sounds, it still hurts like a you know what. Even though the dislocations/subluxations hurt, I’m still surviving and living a pretty great life. 😁
I woke up today to 3 emails. All about people who have subscribed to me. I can not thank y’all enough. But I’m going to try. I just wanted to thank everyone that has ever helped me when I am down or supported me in any way. I really can’t explain the way I feel right now. It is amazing knowing that I have to many people in my life that care to understand what EDS is and want to listen to what I’ever got to say. I had very little hope that this blog would be seen by anyone but my dad but I have been amazed by my support. I love each and every one of you. I know it’s only been 3 days but I promise to try my very best to make y’all proud. Thank you.
If you saw my last post, then you already know I am going to start a 30 day EDS blogging challenge. Well here goes nothing… Today is day one.
Day 1: Introduce Yourself and What Type of EDS you have.
My name is Tori and I am 22 years old. I live in North Carolina and am currently going to school to become a Special Education teacher. Blogging isn’t something I usually do, or even considered doing but somehow I am here. I chose to share my story because I am a Ehlers-Danlos Syndrome survivor. I use the word survivor because I don’t like to think I am suffering from anything. I live with EDS hypermobility Type each and every second of my life but I am doing okay. Hypermobility means that I dislocate. I know it sounds gross, but it’s my normal. I like to think of it as a superpower. Doesn’t sound so super, but it is. My pain tolerance is incredible. Remember those signs in doctors offices that have a pain scale from 1-10 and the emojis that show happy to sad? Well your 10 is my (and other EDS survivors) 20. Pretty intense but it means we are strong enough to handle it. With EDS some days are good, some bad and some really bad. Everyday activities that most people wouldn’t ever consider as a challenge, can be gruesome. It’s a weird world I live in. I mean imagine a set of stairs. You probably think, “gosh, isn’t there an elevator?” but take them anyway or you may tackle the whole set without even noticing there were stairs there. Not me. I think about steps before I even leave my house. If friends of mine want to go somewhere and ask if I want to join, I contemplate the amount of walking, inclines, stairs, time spent standing, time spent sitting, what I have to do for the rest of the day, what I have to do tomorrow, and if all of these added together are worth the risk of an hour with a friend. It seems like a giant math problem, right? Good thing I like math. It’s a weird life but I am enjoying it.
It’s pretty obvious I am new to blogging. I am still trying to get used to the idea that what I write will be out there for the world to see and the idea that someone is actually reading it. To help with the beginning blog jitters, I am going to participate in a 30 day EDS blog challenge. What’s that? Well it is going to be 1 blog post a day about me and how EDS has made a difference in my life and who I am. Throughout the next 30 days, I am going to try and open up about the hardest and most enlightening parts of my life. So, bare with me, it’s all about my crazy fun world. I encourage comments but remember what your momma told you, “if you have nothing nice to say, say nothing at all”.
I am a zebra. Not something you hear everyday. A zebra is someone who "suffers" from a rare disorder. I put suffers in quotes because I don't like to think that I am suffering from anything. I am surviving and I happen to be surviving with Ehlers-Danlos Syndrome. Try saying that 3 times fast. I sure can't. EDS, as we like to call it, is a connective tissue disorder that causes me to dislocate and have other heath issues. So why zebra? Well think about it, if you hear the sound of hooves you will automatically think of a horse but horses are not the only animal with hooves. Zebras exist and make the same noise. When a patient with EDS is seen by medical professionals, the doctors tend to think of the simple or common answers even though there are zebras that have more rare explainations for their ailments. I know it seems crazy to find the term zebra comforting but as a EDS Surviver it is nice having a term that perfectly discribes us. So I can say, I am proud to be a zebra.