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Tuesday, October 26, 2010

FMD does not define me

I was diagnosed with FMD in 2007. With that diagnosis came an identity crisis... I am now someone with a chronic disease.... I am no longer who I was yesterday, before my diagnosis. I considered myself active, energetic- a few complaints here and there but not someone with a life threatening condition. After being diagnosed I went through the five stages of grief, just like anyone else who has lost something- I lost my identity. Elisabeth Kubler- Ross was my new friend.
Denial-  I thought really how serious can it be to have your carotid arteries 75 % stenosed bilaterally... I know my blood is flowing because I can hear the bruit in my ear. I was diagnosed with brain aneurysms. My thoughts on this,  well many people go through life without realizing they have them - I am really lucky because I know that mine are located off the M1 branch!
I quickly moved to Anger- How did I get this and why? Who can I blame... genetics, environment... who's fault is this that I have to live in fear of dissection, stroke, having the possibility of loosing a kidney... my identity quickly changed to "Crabby Mama" according to those who love me. I would say this stage lasted about 6 months after my initial diagnosis.

Next came the Bargaining-  I devoted the next two years of my life to FMDSA (Fibromuscular Dysplasia Society of America) my identity was now a position on the Board of Directors for FMDSA. I gave my time and money, thinking if I just give a little bit more we will find a cure to this chronic vascular disease. I wrote letters to all the top 100 hospitals about FMD then started my goal to educate every hospital I could find via the internet. I attended conferences to educate physicians, I spoke with other patients, I raised money... but none of that took away my fear of what will it feel like if I dissect an artery, how will I take care of my boys if I have a stroke... will I end up in a  nursing home at the age of 40 unable to care for myself, how will my husband cope?

Fear has a way of leading into Depression- and my identity took a step back to someone with a chronic illness. I stepped down from the FMDSA board to pursue helping a young girl from South Africa with a progressive form of FMD, Ashleigh. I will forever be grateful for the inspiration and motivation Ashleigh gave me. She gave me a gift that I will never be able to repay. She gave me the gift of courage and perseverance. She showed me that her disease did not define her what a tremendous lesson this 16 year old taught me.
It is now 2010 and I can say with confidence that I have finally reached the final stage - Acceptance. I know it is going to be ok. I can't change the fact that I have this disease but I can prepare for what lies ahead, the unknown. I can do this by focusing on my true identity... I am wife, a mother, a friend and an advocate. I love spending time with my rescued animals, running, reading and laughing with my friends. I am not someone with a chronic illness I am so much more than that.

1 comment:

  1. Kari, this is what makes you an inspiration to others such as myself, who are newly diagnosed and just at the beginning of these stages.
    Thank you for being you! I love you!