Picture of me graduating from Kula Kumala Yoga in New Jersey. When I took the medication only when I was not in remission, I never stabilized. Taking a daily dose my body has adjusted and I am able to function normally in my life again. I have herniated discs mostly in my neck from a car accident years ago. The fluid would sit on those discs creating the perfect storm. I had severe neck and head pain not too dissimilar from migraine headaches. My joints would be stiff and painful when I was out of remission. The fluid would cause compression on the nerves and I could barely use my arms and was bedbound for several weeks (several years ago). I have had symptoms of this disorder since childhood. My abdomen was always distended and worsened prior to menstruation. As a child I had vasomotor symptoms and itching and sometimes hives on my skin with no apparent cause. Taking the medication daily (Adderal or Dexedrine) which is prescribed "off label" has given me my life back. I had to retire from my Nursing Profession which gave me the opportunity to fully immerse myself in what was going on in my body and finding the help and answers that I needed to begin my journey back to health. Since taking the medication, I have now become a yoga instructor. One friend described my process as "a phoenix rising from the ashes." I certainly feel that way and am forever grateful to Dr. Jerome Check in Philadelphia for spending the time, doing testing and diagnosing this disorder. Remember that there was a time doctors thought women with Multiple Sclerosis were crazy or "just hormonal." When men began getting the disorder, it was finally taken seriously. This is a common, not a rare disorder. It is underdiagnosed. I have since met many people with this disorder and although the severity varies, we all have these same issues.
Pictures taken from friends I met online while looking for other people with this disorder. They were kind enough to give me permission to share these photos of themselves for the benefit of others.
We all have been called "fat" or "lazy" at one time or another. You can see that these ladies are not even overweight (not that it should matter if you are retaining fluid)! I remember showing a doctor the distention and he would not even really look at me. I was referred to a gastroenterologist who determined nothing was wrong, so I received the label of Irritable Bowel.
