Jamie’s Story

Site created on February 28, 2018

*******Please click on "ways to help and scroll down to planner.." That's where the calendar and sign-up sheet is for help. ********
Below is an introduction Jamie's health.
Jamie lives with atypical CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy). Since the onset in March 2016, she has lost sensation and reflexes in her lower limbs and it is moving up her arms and legs. CIDP is a rare autoimmune and neuromuscular disease It's often described as the chronic version of Guillaine Barre and looks similar to primary progressive MS. It has advanced and not responded positively to treatments. From a medical perspective, the goal is to conserve energy, slow the progression, and reach for quality of life. Jamie uses a power wheelchair and has braces and forearm crutches to help with movement. She's hanging tough and often uses the hashtag #sickfightsback. The one thing that is statistically significant is that Jamie's vitals are always better after she has heard from or shared time with others. With that, this site is set up to help Jamie fight back. It takes a village. Let's do this.

Newest Update

Journal entry by Jamie J

Hello friends -
I'm new at the full update, so please be patient as I adjust to meeting folks in on my health situation.
I'll start with gratitude. Holy cats! I have felt so loved and supported as I've become public about my illness. Thank you.
Plasmapheresis has been a difficult treatment. I am a little hesitant to share details publicly, but please do DM if you would like to ask anything. Hauenstein and the Blood Bank are going back in w/plasma exchange peripherally instead of in a central line late next week.
Wolverines - I'm super grateful to be going to another specialist at UofM in late March. I'm starting the search for alternative treatments, as well, so if anyone has insight into rehab facilities or specialists in neuromuscular and autoimmune diseases, I'd love to hear from you.
Woof - That one is for my pup, Hannah. She hangs out with me, provides help when I'm out in public and keeps me up and moving when I'd prefer to nap and gives a tennis ball a run for its money. Dogs are awesome. So are friends. 
Much love and thankfulness!
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