Please consider donating to Jordan’s medical fund on GoFundMe.
My name is Jordan, and I’m a 31 year old woman living with Ehlers-Danlos Syndrome Type 3, dysautonomia, mast cell activation syndrome, gastroparesis, and endometriosis (in remission after two surgeries). I live near Boston with my loving and patient husband. I have a wonderful, supportive family (my parents and two brothers) who have been there with me every step of the way. Without my husband and my family, and the strength given to me by the Lord, I would be lost. My hobbies include photography, gardening, indoor and out, (here is a link to pictures and info on my plants, which I know is incredibly dorky), reading, writing, and patient advocacy/activism. I’m a country girl who lives in the city. I’m a sci-fi, fantasy and tech geek. I have two cats, Nollie and Lola, and a snake, Jag.
I’ve always had GI and general health problems, but in 2012 I was thrown into frightening illness. I had a few very scary years trying to find a diagnosis, battling severe malnutrition, in and out of the hospital, having several surgeries. In 2014 I had surgery to place a permanent feeding tube, which saved my life. I regained the 25 pounds I had lost and I’m out of danger now, but every day I battle chronic pain and fatigue. In spring 2015 I had a hysterectomy, the last step in removing my severe endometriosis (I also had an excision surgery in 2013). However, many of my symptoms have not improved and have actually gotten worse. In the summer of 2016 we finally found out why – I have Ehlers-Danlos Syndrome, which explained my debilitating chronic pain and fatigue, and also explained the many mystery symptoms I’ve suffered since birth!
My life right now is managing my illness, trying to stay out of the hospital, and trying to keep a sense of normalcy. I have doctor’s appointments at least once a week, and lots of procedures and tests. I need a lot of rest so I read and watch a lot of TV (gotta love Netflix and Hulu!). I spend a lot of time with my family, who are also my friends. I also have a great church family that I love to spend time with, and when I can’t make it I Skype into my Sunday School class. I’m passionate about patient advocacy and education. I started this blog as a cathartic expression but also to share the information I’ve gathered over the past few years. My goal is to help even one person skip over the years of struggling for a diagnosis and searching for information that I went through.