Redefining Normal: In the words of MHHA family Lorri and Sam

Posted: October 4, 2013 in Uncategorized
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Thank you to the Rehg family for allowing us to share this touching post. Navigating the path of a debilitating chronic illness being an adult is incredibly hard. Having to watch your teen go through it and live with daily pain… heart wrenching. The Rehg family have been a tremendous source of information and inspiration. Hugs to you all.
 
In Lorri’s words (Mom to daughter Sam):  In honor of today being the start of Dysautonomia Awareness month, I wanted to repost a post from Sam that I somehow posted with limited access the first time! As many of you know, we’ve been on this Dysautonomia (and Ehlers Danlos) journey for almost 5 years now, and it’s been a long and difficult road. We continue to redefine a “new normal” every day, while having hope and faith that one day we will all find a way to beat this. It’s a difficult path, and it often feels so isolating.
 
We are so grateful for all the love and support from our family, friends and Sam’s extended team of docs and caregivers as we find our way through all of this. We pray that one day this will all be behind us, and all the families whose lives have been impacted by the losses experienced with chronic illness as well. It takes alot of courage and strength to face all of the challenges that a chronic, hidden illness brings, and to open up and share that with others.
 
Photo: In honor of today being the start of Dysautonomia Awareness month, I wanted to repost a post from Sam that I somehow posted with limited access the first time!  As many of you know, we've been on this Dysautonomia (and Ehlers Danlos) journey for almost 5 years now, and it's been a long and difficult road. We continue to redefine a "new normal" every day, while having hope and faith that one day we will all find a way to beat this. It's a difficult path, and it often feels so isolating. We are so grateful for all the love and support from our family, friends and Sam's extended team of docs and caregivers as we find our way through all of this. We pray that one day this will all be behind us, and all the families whose lives have been impacted by the losses experienced with chronic illness as well. It takes alot of courage and strength to face all of the challenges that a chronic, hidden illness brings, and to open up and share that with others.  A couple of weeks ago, Sam was brave enough to share a glimpse into her heart, and into the "inner world" of life with chronic illness.......From Sam:  "I know it's hard to believe that you can actually miss school... But when your stuck at home only being able to do very few things every month. And when you do, being knocked out for weeks. You come to REALLY miss friends, homecoming, school, and everything that comes with it. High school is supposed to be fun and all kinds of new experiences . But instead for me it's filled with doctors and all kinds of new symptoms. I may look normal and try to hide my pain but, in the inside its always there and it never goes away.You never know how good you have got it, until it's gone."A couple of weeks ago, Sam was brave enough to share a glimpse into her heart, and into the “inner world” of life with chronic illness…….From Sam: “I know it’s hard to believe that you can actually miss school… But when your stuck at home only being able to do very few things every month. And when you do, being knocked out for weeks. You come to REALLY miss friends, homecoming, school, and everything that comes with it. High school is supposed to be fun and all kinds of new experiences . But instead for me it’s filled with doctors and all kinds of new symptoms. I may look normal and try to hide my pain but, in the inside its always there and it never goes away.You never know how good you have got it, until it’s gone.”
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