Staying M.I.A. Just A Tad Longer…

I know it has been quite some time since I have written here, and I wish I could tell you that I have a lot of fun posts coming up for you!

 

However, I will be taking an extended break from this blog in order to focus my attention and energy (or lack there of) on my health and chronic illness situation. Please feel free to reach out to me on social media, or by email or text. I’m more than happy to chat, but just won’t be writing about my health through here for a little while.

@KristinMCoppens (same username for all social media channels)

kristin.coppens@gmail.com

734-945-8084

 

 

xoxo,

 

Chronically Kristin

ePharma Summit

Sometimes the timing on things in life blows my mind. I have recently been feeling pretty down about not having more opportunities or time to do my ePatient advocacy and chronic disease awareness work, especially when it comes to blogging and social media about it. Then, a few days ago, my lovely #MedX friend Kirsten, who blogs at Not Standing Still’s Disease, posted about blogging and attending the ePharma Summit in NYC at the end of February. Not even a full day after I followed the Summit’s Twitter account, they reached out and asked to speak with me on the phone about guest blogging and live coverage during the conference. WHAT?!

 

I am so unbelievably honored, and humbled, and oh so excited to do this and attend this conference. First of all, I get such a high from live-covering a conference and attending all of the speaker sessions. It is such a whirlwind of ideas, innovation, and collaboration. Secondly, the list of speakers for this Summit is incredible and I am preparing myself to be blown away by what some of the biggest brands in healthcare and social media will have to say about patient engagement and healthcare innovation.

 

So what is the ePharma Summit? For three days, over 55 different speakers will present ideas about the art of digital strategy. In their own words: “The event where leaders come together to transform strategy and adapt to evolving customer and influencer bases. Seize the opportunities of digital health trends and disruptive innovation.” SO COOL. I could nerd out on this stuff 24/7. Learn more about the Summit, and register, here.

P2006-epharma-logo-2015

Here’s an example of a few of the speakers: ¬†Abel Rajan (Director of Marketing Analytics and Insights for Novartis), Adam Jackson (CEO and Co-Founder of Doctor On Demand), Christoph Trappe (Chief Storyteller for The Authentic Storytelling Project), Edlynne Laryea (Social Media and Digital Center of Excellence for Johnson & Johnson), Jack Barrette (CEO of WegoHealth), Joseph Kim (Senior Advisor of Clinical Innovation for Eli Lilly and Company), Mary Ann Belliveau (Health and Wellness for Twitter), Meredith Guerriero (Director of Facebook Health), Stefani Klaskow (Head of Industry Healthcare for Google), and so many more.

 

What I’m most excited about with this ePharma Summit is that it’s such a well-rounded conference. Not only are there a huge number of reputable and impressive speakers, but there is also a large networking portion and a number of workshops. The workshops are designed to network with the speakers and other healthcare professionals to go over digital strategy, new innovations, and current and future trends. I’m so excited to learn from the expertise of these leaders, as well as providing my insight as a ePatient advocate and chronic diseases fighter.

 

If you want to follow along with my blogging of the Summit, I’ll be blogging once per week leading up to the conference, and then I will provide a blog post about each session/workshop that I attend. Follow the ePharma blog here. And listen to the conversation on social media with: #ePharma16 and @ePharma.

 

 

I can’t wait to share my experience with you! Feel free to continue following my blog here, or follow me on social media with @kristinmcoppens.

 

 

xo,

Chronically Kristin

Powering My Arthritis Power

I’m so excited to introduce this new blog series to everyone. I’ve been working closely with some organizations lately on how to become a better patient advocate. How can we be even more transparent so as to help other chronic illness fighters?

I’m kicking off a new series with Creaky Joints (an Arthritis Resource Community) that will chronicle my experience with their new app, Arthritis Power, my 10-week pain management program, and my health status in general. A few times a week, I’ll update everyone on how I’m using the app, how I’m feeling and/or a general health update, and how the pain program is going. 

The Arthritis Power app is meant to be a way to manage your disease better. The app will track your symptoms, disease status, share resources, and share symptom tracking with your doctor. (Cool, huh!?) 

The pain program I’m starting is at Mary Free Bed Rehabilitation Hospital in Grand Rapids, MI. The program is 2-3 days a week for 10 weeks and incorporates physical therapy, physicians, occupational therapy, pain psychology, and more. I’m excited to (hopefully) share progress with you all!

Here is a quick Periscope intro for you:

  
(Excuse the tired eyes, I worked 11 hours today)

Follow Creaky Joints:

@CreakyJoints 

#Arthritis365, #CreakyChats (every first Monday of the month), and #ArthritisPower
Follow me: 

@KristinMCoppens

#ChronicallyKristin

xo,

Chronically Kristin

Naysayers and Misunderstandings

Yikes! I apologize for my big gap in posts here; I’ve been caught up in working a lot lately and my little blog has fallen by the wayside in the past month. I vow to be much better moving forward! Anyway!

You can have a conversation with just about every individual that suffers from chronic diseases and they will have experienced the same interactions about said disease with those around them. I’ve talked a lot before about how it’s a balancing act to ‘manage’ the different relationships in your life when you have chronic and autoimmune diseases. Those closest to you tend to be somewhat understanding and helpful. Even others are sympathetic and show concern. But when you throw the word chronic into the situation, our brains have a hard time fathoming the gravity of that. Humans are meant to understand an acute ‘problem’ and then see the solution or cure, and then we move on. Well, that’s impossible with autoimmune diseases as there is no cure. 

  
Here are some of the most frustrating, yet also funny (funny ridiculous, not funny haha) comments chronic and autoimmune disease fighters deal with. 

  • “Wait, you’re still sick?!”
  • “You’re sick again, weren’t you just sick a few weeks or month ago?”
  • “You should stay positive! You can get better that way.”
  • “Have you tried ___? My coworker’s friend’s brother’s girlfriend’s mom did and she was cured!”
  • “If you cut out ___ you wouldn’t be sick anymore.”
  • And on and on…

It’s a double-edged sword for me. On one hand, it’s so frustrating and ignorant. But on the other hand, invisible illnesses are just that: invisible. So I understand why people have a hard time. It’s true that unless you have these diseases, you really can’t understand 100%. So I have to give people a little slack. But there’s a fine line between supportive and trying to be a medical professional or somehow acting like there is some easy fix. I won’t get better. It’s called chronic for a reason. 

  
Then we move on to the naysayers. They have a dotted line to the people described above, but they’re different. And worse. These are the people who don’t believe you. Who think you’re faking it. Who think you’re weak or can’t handle it. Or who think you’re a hypochondriac. These people can add rude, cold, brash, and unsympathetic to their resumes. 

  
In fact, I actually have an ex-boyfriend who dumped me because he thought I faked passing out and a trip to the ER. That’s right, that was the reason he used. I did it to get attention and ‘test’ him. (Asshole)
Here’s the thing. This isn’t an easy life. These are not easy diseases. And when someone accuses us of faking or exaggerating or what have you, it’s the lowest blow you can give. It’s a straight shot to the heart and like you got the wind knocked out of you. Those are the people I wish I could switch places with for a week so that they can deal with my body and my immune system for a bit. They’d run screaming. 

  
But. In the grand scheme of things, those people are not worth the little much-needed energy that I have. And I don’t have time to waste on them. No matter how soul crushing it is to have friends, or acquaintances, or coworkers, or loved ones, or what have you that act that way or live that sense of entitlement and ignorance. 
One of my many goals as I battle chronic diseases is to raise awareness, lower the stigma, and form less ignorance around our struggles and illnesses. In doing so, I hope to become a voice and an outlet for other patients. 

  
To do this, I’ve decided to do two things on a weekly basis. And I’ll be starting them sometime in July. I’ll be updating this site to include links to some live conversation over chronic diseases. I plan to use Meerkat to do a weekly live Q&A, and I plan to do a weekly tweet chat. Both will revolve around the idea of ‘My Invisible Life.’ 
So here’s my call out:
What kinds of themes and topics would you like to see discussed? What questions do you have? What experiences are you looking for?

Sound off in the comments below, or tweet at me (@kristinmcoppens)! I’m excited to start interacting with everyone more. 

xoxo,

Chronically Kristin