Guest Poster Adrienne McGuire

Diagnosis: Known At age 36, a 20 year long search for what ails me ended when I was finally diagnosed with Ehlers-Danlos Syndrome Type III. I should probably say that the search only switched paths, as I now have something new to learn about, but at least I have a diagnosis. Since I was 16 years old (and even before then, but not regularly) I went to a plethora of different types of physicians, asking them why I was in so much pain, why I kept fainting, why my heart beat fast, why I got dizzy a lot, why all of my muscles shook and twitched, and why my back felt like the back of a much older person. And since my blood work always looked “normal”, some doctors chalked it up to anxiety; others called it fibromyalgia. But I knew there was something else going on.Hindsight is 20/20; isn’t that what they always say? Looking back now, I can see that my EDS and POTS problems started when I was young – around 9 or 10. I had several fainting spells and had developed an inability to withstand any amount of heat without passing out or nearly passing out and having a racing heart for hours. I had horrible shoulder and back pain as young as 13 and have ever since. My neck has been in and out of spasm since age 20. At age 22 my entire body began to twitch, which I now know was from overuse. By 25, my legs were constantly aching so badly I was in tears daily. And that was eleven years before my diagnosis.Last year I had to take some time to grieve my old life and say hello to the new me with limitations when a rheumatologist told me I have the hypermobile form of EDS along with a case of POTS. Both of these syndromes fluctuate with hormones and are found more often in women than in men. As I educated myself about the disorder, I realized that the only way to control the symptoms was to slow down and become more aware of my body and its signals. I allowed myself to mourn my lost abilities to run, hike, and do cartwheels. That was 9 months ago. Today, I am moving forward.It’s definitely true that, if you have a connective tissue disorder, you will lose some of your physical abilities, but there is also an endless potential to gain mental strength, focus, and perspective. I could no longer work as a legal assistant so I set my sights on being productive in an alternative way. I began pacing myself, therapy (both physical and mental), trial and error to find effective medications and supplements, meditation, and learning how to ask for help. I now wear silver ring splints all the time and other supports as needed for wrists, knees, elbows and neck. I take medications that control my POTS symptoms which means I can get out more, albeit in short bursts. I recently talked to my doctor about getting a wheelchair for long outings. But, overall, when I look at my life now, with a disability, I am so much happier and grounded than I ever was before.Adrienne McGuire is a writer, website consultant and wellness enthusiast who abandoned the corporate world to create a life that worked for her. Her journey down the road less traveled took her to www.dailypath.com , where she is now an integral part of the writing team.