Q:Are you scared of making mid/long-term plans?
Oh jeez. Talk about a loaded question.
Scared? Yes. Apprehensive? Terrified? Anxious? Yep. Especially when my long-term plans involve making financial commitments or commitments to other people.
But I’m getting to the point where I’m learning not to let my fears and anxieties related to my diseases hold me back. I’ve slowly started taking bigger steps outside of the box that these diseases and chronic pain have put me in. Every step is a little easier to take. And sometimes the steps aren’t easier. Sometimes I just take them anyway. Going into medicine is one of those long-term plans that has me petrified. Here I am, taking the steps anyway.
It took me running myself into the ground socially, emotionally, mentally, and physically to realize that even if I sign on for some serious commitment (e.g., grad school) and have to bail—it will not be the end of the world. I have faith in myself that I’ll find my way, even if it’s the hardest thing I have to do. Even if I’m homeless or hospitalized. I’m learning how to have that faith in myself and my ability to persevere. That’s kind of awesome and terrifying all in the same breath.
When I think about making long term plans in the context of a progressive disease and very limited treatment options? Yeah, it terrifies me. And to be really honest, if I sit and think about whether or not I can handle grad school or marriage or whatever ginormous plans I may want to make in the next decade, I panic a little bit. I know Kineret is slowly becoming ineffective. I know there are only so many treatment options. I know they’ve recommended looking into a stem cell transplant. Those fears are all possibilities. And it’ll be what it’ll be. They’ll either happen or they won’t and they will do so regardless of any plans I make or do not make. So instead I focus my energy on the here and now. Life will pass me by—the same number of days will come and go—whether or not I make plans and live the life I want to live to the best of my abilities.
That doesn’t mean it’s easy (newsflash: it’s not easy), simple, affordable, D all of the above. But eventually you just reach a point where you have to say fuck this, I’m going to try and rebuild a new life for myself. That’s the point I’m at right now. I am doing my best to channel all of my fear into those little baby steps forward.
I hope this was coherent. It’s a long process that doesn’t ever really end; we go through this in stages. And you know what? It’s okay to be petrified to make plans in the face of a chronic disease. It’s normal. My email inbox is always open if you want to talk more.
February 28, 2014 is Rare Disease Day! That’s 36 days from now. Rare disease day is a special day for me. Not only do I have three extremely rare diseases, it’s also my birthday (I was born on leap year…always defying the odds, clearly). I’m hoping to do something special, maybe a fundraiser—but more on that later.
Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment…
The theme for 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.
Check out www.rarediseaseday.org to find an event near you (or host your own) and learn how to get involved. I’ll be posting more as the date gets closer. Please reblog and tag your own rare disease communities!
Stanford Medicine X Live: Self-Care and Burnout
I’ll be on Medicine X Live tomorrow at 8:30 PM EST talking with other ePatients and providers about what it was like to maintain self-care at a large medical conference. We’ll also be discussing compassion fatigue and burnout for both ePatient advocates/bloggers and providers. Tune in and follow along on twitter with our live chat using the hashtag #MedX. We will be taking live questions from twitter, so feel free to tweet us with any Q’s you might have.
Follow our tweetchat moderator, Nick Dawson @nickdawson for details, links, and to send in any questions during the chat. An easy way to follow the live chat is to use tchat.io, type in #MedX into the search bar, and watch :)
I will post the live stream link tomorrow before we go live!
Chronic Illness Problems 01/11/14: The Human Barometer!
- Knowing what the weather is going to be like before you even get out of bed in the morning
- Who needs the weather channel when you have arthritic joints or an autoimmune disease?!
New Semester, Updates, MedX Live
A little heads up,
I started a new semester of classes and am going to be a little MIA for the next week or so. My everything always flares up when I’m trying to adjust to a new routine/schedule…and I may have bitten off a tiiinnny bit more than I can chew class-wise (but we’ll see) and am taking two labs. So that means less time writing/blogging/tweeting and more time sleeping/resting/adjusting to longer days.
BUT I will be featured on Medicine X Live next week, where I’ll be talking with some of the other MedX students about what it was like to be a student at Stanford’s Medicine X, why we desperately need more students to get involved, and a really exciting program that every one of you medblr people should check out (and Dr. Cranquis, I am looking at you. You belong there!). So make sure to watch for that post here and on facebook.
I’m taking a course called Medical Sociology this semester and I can’t wait to share bits and pieces of what I’m learning with you guys—it’s 100% relevant to disease/disability and patient engagement. I really think this class will simultaneously kick my ass and make me a better, far more educated advocate. Nothing makes me happier than my academic studies and my advocacy work overlapping.
Are any of you taking anything interesting? Good luck with adjusting back into classes! And to those of you who are taking a break from school due to medical crises, remember that you’re not alone, and everyone goes at their own pace. Stay strong and keep your head up.
Love & spoons as always,
Chronic Curve’s Top 13 Posts of 2013!
*If any of you know the original photo source for this image, please send it my way!
- Not So Simple: Chronic Illness, Chronic Pain, and Sleep
- But You Don’t Look Sick? The Face of Chronic Disease
- Dr. Oz and Autoimmune Arthritis: Diet and Supplements Are Not a Cure
- What Are Your Nails Telling Your Rheumatologist or Gastroenterologist?
- Keeping Your Head Above: It’s Not Always Pretty
- Staying Positive With a Chronic Disease
- The Problem With Pain Pills: A Letter to Mr. Barry Meier and the New York Times
- The Starting Line: My Journey Back to Running Despite Arthritis and Chronic Pain
- Coping With Arthritis: Tips for Pain, Stiffness, and Swelling in the Hands/Wrists
- Quiet Moments With Chronic Pain
- College and Chronic Illness: 19 Tips to Study Strong and Fight the [Brain] Fog.
- Let People Care: How Stanford Medicine X Taught Me Not to Fear My Vulnerability
- Patient NeXt at Stanford MedX: The New Patient — video of the panel at MedX that explored the evolution of patient relationships, the role of technology, and patient empowerment
According to Google Analytics, these are the top 13 posts of 2013 for Chroniccurve.com! 2013 was an incredible year of growth for Chronic Curve and I am so exited to see what 2014 brings. Thank you for the kind messages, the stories, the emails, the inspiration, and as always, thank you for reading. Take a look back at the top 12 posts of 2012 here.
Stay tuned for a year in review-themed post tomorrow and a special one on the 1st. I hope all of you have a happy New Year!
What were your top blog posts of 2013?
Make sure to place your Cure Rheumatoid Arthritis bracelet orders before December 17th in order to have them in time for Christmas!
If you’re looking for a simple way to spread some awareness and give back this holiday season, considering buying a Cure Rheumatoid Arthritis awareness bracelet. $5 each and proceeds are being donated to the Arthritis National Research Foundation in January 2014! Choose from two different styles.
Make sure to place your order before December 17, 2013, in order to receive your order in time for Christmas.
- To learn more about why we support the ANRF, about the bracelets, and to order yours: head to the Chronic Curve webstore.
- Questions/comments/feedback? Email us: email@example.com
Q:How do you talk about your condition so easily?
The short answer? I don’t. It’s not easy at all and honestly, I do not know many advocates or bloggers that share their lives with chronic pain and chronic disease easily.
Long answer? I cannot tell you how many times I write difficult posts and let them sit in my drafts for months at a time because of how vulnerable it makes me feel to post them. Those posts with intimate details of disease? Posts about finding hope, about losing hope, about depression and sadness that come along with chronic pain? Those were all written with trepidation and tears. Sometimes, I have to step away and take a blogging break completely. No part of writing about my life with these diseases is easy. And it’s even harder to talk about it in person. Outside of my circle of close friends, it’s not something I really talk about at all. Even with my friends, it’s not often that I talk seriously about it; usually we just poke fun and laugh about whatever I’m struggling with.
The thing that allows me to keep on blogging is knowing that my experiences help people. If just one person feels even the slightest bit less isolated as they go through some of this, it’s worth it to me.
I know I have stories that are powerful enough to spark change (I firmly believe all patients do). Some days I don’t have the ability to share what’s really going on. I worry that I complain too much. I worry that I am too negative. I worry about over-sharing. I worry that I am not sharing enough. I worry that I come off as pretentious. I worry that sometimes I sound too bitter.
Have you figured out that I worry about everything?
I also have pretty strict boundaries when it comes to what I am willing to talk/write about. I don’t really discuss my struggle with symptoms of endometriosis of the bowel, for example—it’s too difficult and far too personal for me to share with the world. I refrain from discussing family, friends, relationships, or sex often or in much detail when I do discuss it. There’s a reason for that: those are private, treasured parts of my life that are not easy to share with thousands of people (including everyone from friends to professors).
I don’t know if you were able to watch the video I posted from Stanford, but we actually talk about this issue and how we decide what we share or talk about. It’s worth watching if you get a chance :)
I hope this answered your question. There is not really a simple answer. Ultimately it comes down to knowing that I have the ability to create change and a dialogue, and that’s more powerful than the anxiety and uncomfortable sense of vulnerability that accompany being candid about chronic disease and chronic pain.
Feel free to email me if you are struggling with this, and remember to take it a day at a time whether you’re blogging or just trying to handle day-to-day conversations.
Medicine X: A Catalyst for Change
Two weeks ago, I had the honor and privilege of being in attendance as an ePatient scholar at Stanford University’s Medicine X. It was MedX’s patient-centered structure that grabbed my attention a year ago, when I sat from home, curled up in bed watching the 2012 live stream. I live-tweeted the words and concepts introduced before me, completely riveted by the passion, the production, the people.
I needed to be there. A year later, I was sitting amongst 30-something other incredible epatients in a room with people from all walks of life. Doctors, health care professionals, students, press, designers, biotech.
The three day conference was a literal down pouring of ideas and information: sociological, psychological, biological, technological information. It challenged my advocacy efforts, my ideas, my unconscious biases and stereotypes, my knowledge (or lackthere of in many areas). It challenged my past, broke down my walls, and propelled me forward towards a better future in advocacy work. It challenged me to step way outside of my comfort zone, to raise my standards, to believe in a hope that seemed out of reach prior to MedX. We planted the seeds for incredible growth in a matter of 70-something hours. Many of us walked out of the conference with new goals, dreams, career aspirations, and certainly a renewed sense of inspiration and passion.
But what pulled at my heart strings, what blew my mind over and over again, what I walked away with, and what I now have four poorly constructed drafts about sitting on my desktop—the power of the patient experience. That power is, in essence, the heart of Medicine X.
All of the technical talk, the science talk, the research and design discussion—it ultimately revolved around the patient or improving patient care. From Sarah Kucharski’s ignite talk that sparked a complete silence (at a conference where the sound of fingers on a keyboard live tweeting you is the loudest applause, mind you) that shook all of us to our core, to the buzz between clinicians and ePatients that filled the halls during coffee breaks (post coming soon about this), to Dr. Leana Wen’s beautiful presentation (recorded, but has not been posted yet), which discussed how we are in desperate need of moving back to the basics in health care, how we underutilize the single most powerful tool: the patient narrative.
If there was any ePatient there in attendance or at home watching that was not sure of their power prior to MedX, they left with that sense of strength and purpose tucked in their back pocket.
Medicine X is a catalyst for change. We had (and are still having) the discussion, encouraging brainstorming, innovation, better dialogue. Each year, it grows larger. In fact, the level of social media participants at MedX grew by 169% from 2012 alone. But this is where my biggest hangup is in regards to the power of the patient narrative. We have to move beyond the hypothetical, beyond the conversation.
It’s time to act. To move the discussion into medical education: teach our future physicians, nurses, PA’s and EMT’s, pharmacists the power of the ePatient partnership. To teach current healthcare professionals the power of the ePatient partnership. That means allowing ePatients to speak to classes, to consult on programs, to participate in conferences and workshops that are leaving ePatients out of the picture. It means having more panel discussions with physicians, pharmacists, and patients on stage. It means creating partnerships one patient, one doctor at a time. It means changing the very rigid culture and curriculum of medicine itself—certainly an incredible undertaking, but forgive me if I do not believe that I am idealistic in thinking we have the power to create a paradigm shift (more so than we already have).
Every patient has a story worth sharing. Every physician has an opportunity post-Medicine X to create something new, extraordinary, and revolutionary. Let’s keep the momentum going, bridge the gap, and work—not just talk—together.