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My name is Jordan, and I’m a 33 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 in Central Massachusetts. I have a wonderful, supportive family (my parents and two brothers) who have been there with me every step of the way. Without my family and friends, and the strength given to me by the Lord, I would be lost. Becoming disabled left me with a lot of time on my hands, so I taught myself how to make jewelry that I now sell in my Etsy shop, Beads and Knots Jewelry. My other hobbies include photography, gardening (follow my plant Instagram account @jordansindoorjungle if you love plants as much as I do), reading, writing, and patient advocacy/activism. I’m a sci-fi, fantasy and tech geek.
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 still have many doctor’s visits, 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. 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.