Participant Page: Raising Awareness for Invisible Disorders

10%
$ 10.00
Raised so far
Of target
$
100.00
Raising Awareness for Invisible Disorders
My Story
Thank you for checking my Balance Awareness Week Personal Campaign Page! I write in my blog Visible Person, Invisible Problem about my own journey with my invisible disorders. I didn't know anything about the kinds of invisible disorders (MAV and CI with impaired VOR)I have before I got sick, and it's really important to me now to share information. I want people to get diagnosed so they can figure out how to cope, and how to move forward with their lives!

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. 

 

 

 


This Page is 53rd out of the 62 fundraisers taking part in event.
Kim Striber has donated $ 10.00

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