My Tribe: How Sick Am I Really?

Everyone has put this so well: I’m with my tribe. I’m around everyone who gets me. Never have I felt this connected and synchronized in my entire life. These people at #MedX; these people are incredible. Their stories, their lives. So similar yet so different. I cannot even put into words how I feel right now.
I am forever changed by #MedX. I plan to write about some more specific healthcare and ePatient ideas, but this is more of my thoughts post-conference. I am struggling today with a serious #MedXHangover. 

Also, I’m writing this on the plane while 3 people around me have their shoes and socks off. Why is that okay? I have a case of the Mondays, clearly. So grumpy!
Another take away from #MedX for me is that I think I need to fight harder about some things with my illnesses. It’s clear that I have two main diseases that have caused other conditions: Ankylosing Spondylitis and Fibromyalgia. What isn’t clear to me are some of the severe symptoms I have that don’t necessarily fit either of those two conditions. I just feel like we’re missing something. And I won’t stop until I feel like I have everything figured out in order to have the highest quality of life. Excuse my language but right now, my health quality of life is shit. 

Here are my draft questions for my doctors when I get home:

  • Why do all of my joints ache and hurt?
  • Why are my knees and ankles continuing to get so swollen all the time?
  • Why do I feel like a walking zombie? This fatigue has gotten debilitating. 
  • Why am I in SO much pain, literally everywhere? My entire body is screaming lately. 
  • Why do some of the diseases talked about at #MedX sound 100% the same as my symptoms?
  • Why do I feel like I have a 24/7/365 flu virus?
  • Why is my brain fog making me feel like I have memory loss?

Anyway, had to jot those down so I don’t forget to touch base on them later with all of my doctors. 
I don’t know how to coherently spell out how I feel about #MedX and all of people there and concepts presented. It’s seriously changed my life, for the better. It has awoken this passion and drive, and dream really, that I thought was only smoldering below the surface. Well, smoldering no more, it’s a full blown fire.
Patient engagement, patient experience, patient advocacy, technology, social media, healthcare, chronic illness, provider/health system/patient, invisible and visible illnesses, eHealth, etc. Thats #MedX. And that’s what I want to do. 
That’s all I have right now. My brain is a jelly mush, and I’m in too much pain to function. 
I’ll update more later!


Chronically Kristin

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