Participant Page: Raising Awareness for Invisible Disorders
When I got sick three and a half years ago, I wanted to know what was wrong with me. Getting sick was not a gradual process for me. I went to bed one night in September of 2011, and woke up in the middle of the night to a spinning world. If I didn't move AT ALL I was fine. I was very sick, and this is what my husband Ron and daughters Leena and Cara woke up to, when I got up in the morning. I managed to communicate that I was sick, and went back to bed.
Ten months later, when I finally got my diagnosis of Migraine Associated Vertigo (MAV), there was still so much I wanted to know. I needed to know what I could do to manage my condition so I would feel better. I wanted some idea of what my life would be like moving forward. Then the following spring, I got my vision disorder diagnosis of Convergence Insufficiency (CI) with Exophoria, an undiagnosed childhood problem, dramatically affected by my vertigo, which impaired my vestibulo ocular reflex (VOR). I was relieved to finally know the other piece of my problems, but again I had lots of questions. I wanted to make progress, but I also wanted to figure out management, coping skills.
Shortly before my MAV diagnosis, I started (and continue) Feldenkrais therapy for the balance problems caused by vertigo. About a year later, when my CI with impaired VOR was diagnosed, I began vision therapy. I'm constantly learning how to cope with my disorders, as well as working hard to make progress. During the first couple of years of my illness, I used a voice recognition program called Dragon Naturally Speaking to dictate to my computer. This allowed me to compose e-mails, and do a small amount of writing, mainly about music. After a year of slowly improving through vision therapy, I was able to use my keyboard again, and to write in more depth about my experiences. I've always loved to write; I've done it off and on since I was a teenager. I am now also writing about my goal of once again teaching private flute lessons.
When I began posting my writing on Facebook, I was invited to become an Ambassador Board Member for the Vestibular Disorder Association, VEDA. VEDA, an organization I discovered after my MAV diagnosis, works to educate the public and raise awareness about vestibular disorders (MAV is considered a vestibular disorder). My writing, I hope, reflects snapshots of my life, which is greatly affected by, but is more than the challenges of living with my invisible disorders.