A Newbie’s view

As a first time patient partner I was not sure what to expect but after getting to know my running partner Sophie Hu this past few months, it has turned out to be a wonderfully positive experience for me. After 2 years of daily debilitating headaches, light sensitivity, partial vision loss as well as a whole host of other equally life altering symptoms, not to mention the hoards of tests and doctor visits that yielded no explanation, I was finally diagnosed in March 2015 with the catch all Idiopathic Intercranial Hypertension (IIH). I would like to say I’m a positive person, but the illness definitely has created a sometimes angry and resentful version of me, forcing me to spin in circles of frustration. For me, meeting Sophie and being a part of this experience has given me a bright place to go, one where there is no judgment or expectation but instead a genuine interest in understanding my day to day situation and a desire to help others like me afford the road to diagnoses and bring attention to the little known diseases many of us life with. Due to the exercise intolerance my condition yields I can no longer run myself, but living vicariously through Sophie’s training for the  Half Marathon and her willingness to run in honour of myself and IIH I have been given a new sense of strength and determination to fight this and take back my life. I would like to thank all the organizers, runners and volunteers for giving so much of your time and energy to this experience. The money raised will hopefully yield answers to those struggling for diagnosed bringing peace and health. To my great dismay due to the fact that I am no longer in remission and just experienced my 3rd Lumbar Puncture (Spinal Tap) in 13 months today, I am not physically be able to join Sophie in Providence for race day but I will be there in spirit and hope to be well enough to participate more fully next year. Good luck to Sophie and all the runners and thank you again from the bottom of my heart for being such an inspiration.