Q:Hi there. Although I don't have a chronic illness or anything like that, I just wanted to say you are really brave and quite inspiring. I hope medical research delivers new treatments for these auto-immune diseases...
Thank you! I hope so too. But more than treatments, I hope we gain further insight into cause/prevention. Can’t find a cure if we don’t understand the disease mechanisms.
And understanding, of course, begins with awareness and education. Thanks for reading :)
World Arthritis Day: October 12, 2013
October 12, 2013 is World Arthritis Day!
Supported by the European League Against Rheumatism (EULAR) and Arthritis and Rheumatism International (ARI), World Arthritis Day brings together international organizations, patients, caregivers, and supporters to raise awareness of the over 200 arthritic conditions, systemic/autoimmune arthritis included.
There are so many myths and stigmas associated with arthritis as a whole—this day gives us an opportunity to raise awareness and let others know that it is not just arthritis.
Get involved and learn more here, and don’t forget to publish your own blogs, reblog, and retweet!
Looking for an arthritis-related organization to support? Check out this resource page for a list of great organizations working towards a better understanding of, a cure for, and better treatments for rheumatological diseases. Reblog/retweet with more you’d like to see supported/added.
So if you were to ask me what I gained from Medicine X 2013…the first things that come to mind are that I am more than my diagnosis […] I was able to witness firsthand the incredible difference between surviving and living. Living involves integrating your disease process into your life and then leading the life you want instead of the life you have. I have seen the power of an informed and empowered patient and that a small group of people will change the world…we may just have to take small breaks to rest.
Let People Care: How Medicine X ePatients Taught Me Not to Fear My Vulnerability
I wrote yesterday that more than the experience of Medicine X, it was the people that changed my life this week.
As is the nature of Autoimmune and Autoinflammatory diseases, there is no telling when a health crisis is going to strike. As the stress (both good and bad stress) of preparing for this experience built, so did my symptoms.
So when I had a travel day from hell, in which there was no ramp to get onto the plane, I nearly missed my layover, and Charlotte airport called security on me for no reason whatsoever, it was no surprise that my diseases went into crisis mode.
A kind of crisis mode that I had never experienced before: my legs swelled to 2-3 times their normal size; my spleen went into overdrive. It was excruciatingly painful. By the time I had walked at least two miles through San Francisco, had a public transit nightmare in which there was a fire on a train route and it took us hours to get to our hotel,
I was in tears (from pain- and you guys know it takes a whole hell of a lot of pain for me to reach tears) in front of total strangers. I was losing feeling in my feet from the sheer amount of swelling.
Britt, the Hurt Blogger, called me by chance when I was mid-hysterics in my hotel room bathtub trying to get swelling down in my legs with cold water.
Within five minutes, Britt, Nick Dawson, Sarah Kucharski (AfternoonNapper), and Liza Bernstein were at my door. Open arms, open hearts. Nick quickly took care of a hotel mix up— I mean took care of absolutely everything. They grabbed my stuff, literally grabbed me, and walked me to a new room. Britt arranged a fridge being delivered to store my Kineret. Sarah took to the front desk to get industrial size trash bags to fill with ice from the ice machine. They got me into bed, wrapped my legs and body in ice, tucked pillows and blankets under and over me where they needed to be. And then, they made me laugh through some of the worst pain I’ve had in a very long time. Total strangers. Complete and utter selflessness.
I write from a place of vulnerability, sure, but being that vulnerable in front of people is not something I am used to. In fact, I’d say I’ve never been vulnerable like that before, sans a few hospital visits. Letting someone take care of me, letting people see me absolutely tremble and shake from pain so severe I couldn’t stop the tremors…that is not something I have let someone see before. Not friends, very rarely family.
This was not how I anticipated meeting my fellow ePatients.
And yet, I’m so glad it happened the way it did. I am honored to have met such giving, kind, beautiful people. They taught me a valuable lesson this weekend: it’s okay to let people care for you. It’s okay to be vulnerable. It’s okay to need help. It’s okay to not be okay, not just online, but in person. It took the entire group of 30-something ePatients looking out for me to learn that I am not letting people in enough in my day to day life.
Eventually, my legs were too swollen for some of my dress pants and my dress shoes. I actually broke the pair of sandals that did fit. Sarah ran out and made sure I had both compression socks and slippers to wear to the conference (yes, I did indeed wear black fuzzy slippers to MedX). Britt took me into her room despite her own pain and set up ice baths for me. Kathy Kastner did the same. And you know what? We laughed the whole time. In some of the worst pain and most vulnerable I’ve ever been, we laughed. Sometimes through tears, but always with grace, understanding, and kindness.
When my bags of ice leaked and I couldn’t run to get my own, Brett ran and did it for me—no questions asked, before I had even a moment to ask someone for help. Emily KG and Nikki bent over backwards to make sure I was taken care of when I needed a hand. There was always someone checking on me. The MedX Staff volunteers wrapped my bare feet with ice mid-conference, then came back the next day to check on me when they saw me in the wellness room. Even Dr. Larry Chu, the astounding director of Medicine X who pours his heart, soul, and every ounce of energy he has into this conference, took the time to see to it that I had accommodations I needed. Unbelievable selflessness.
Joe, despite his own agony at being on his prosthetic leg for 10+ hours more than he should have been, carried my malfunctioning 50lb suitcase across the entire San Francisco airport. And when his pain peaked as we left MedX, I happily gave whatever pain medication I could to ease his agony. Laura, despite her own exhaustion and symptoms from Myasthenia Gravis and Sjogren’s, went into caregiver mode and had my back the entire time— I had known her for a total of 20 minutes at that point. She’s an incredible woman with an amazing story and a beautiful, giving spirit. Jody, a fellow panelist and cancer warrior, shared words of strength, wisdom, and love with me at the perfect time. I’m not sure she has any idea how profoundly she changed my life this week. Erin, fellow panelist and mother of a child with Cystic Fibrosis, went into mother-mode and was willing to get me to a pharmacy or wherever it was I needed to be when things hit the fan. Quite frankly, this post would be much lengthier if I went and tagged each and every one of the ePatients who carried me through this week, but the same sentiment extends to each of them.
The care we all gave to each other was unlike anything I have ever experienced (and I imagine ever will outside of MedX). I would have been in the hospital mid-conference instead of Monday had it not been for this group of people. We arrived in California strangers, and left as family. Everywhere you turned, someone was extending a hand. "How are you?" "No, how are you?” was the recurrent theme of MedX. Even now, as we’ve all traveled back to our respective homes across the country, we’re all messaging each other: How are you? Are you resting? what do you need?
It’s not about neediness. It’s not about incompetence. And that lesson is so beautiful, so necessary. I came into Medicine X incredibly guarded. It’s how I’ve survived and endured the past five years. It’s how I was raised; it’s the environment I’ve been living in. Truthfully, I felt terribly guilty about the care I needed this week. This talk of personal vulnerability and my past is not something I have not shared here on Chronic Curve, but was able to openly share with people this week: that guilt, shame, insecurity, fear of punishment at the hands of being vulnerable. I left Medicine X with that wall knocked down, less afraid of that vulnerability. I left that baggage at the door of MedX and I will be a better patient advocate for it.
The only way to give thanks to this amazing group of people is simply just to pay it forward. So pay it forward, I will, and I sure hope I can be a pillar of saving grace for the next group of ePatients in 2014.
Did you know that the economic cost of chronic pain in US is $600 billion, more than cost of cancer, heart disease, and diabetes combined.
Flooded With Love and Gratitude: Brief Thoughts Post-Medicine X
I’ve tried to sit down numerous times in the past 16 hours since it ended, to put some string of words together that could adequately explain everything I’ve just experienced and felt.
I am completely, utterly, 100% speechless. It’s going to take a long, long time for me to process this, and probably much longer before I write about it with any eloquence (so please keep that in mind if I take some time to digest. In the mean time, I’ll be posting videos/interviews/photos of the epatient presentations).
The people I was so fortunate to not just meet, but grow with, learn from, and create with what was created this week…
Sure, I got to network. Sure, I got to share my story not once, but twice at Stanford.
None of that matters in comparison to the strangers that became family this week.
None of that matters when I think about how I walked into Medicine X with a very limited type of hope—a hope for only making it through the next day, a hope that couldn’t stomach considering the next month or year—, and walked out with a kind of hope for the future that I haven’t ever had- a spark so strong, a flame so bright that I never knew could ever exist. A love and connection with people I have never had with anyone before. These people and this experience have changed my life.
I witnessed selflessness, resilience, courage, strength, humor at the hardest of times, vulnerability, open minds and open hearts, and an electricity in the room that cannot be captured in words, photo, or video. I just…
I am honored to have sat beside all of the epatients this year. To call them my friends and family. To have been on the receiving end of their support, kindness, courage, and love. I feel privileged to have heard their stories.
My heart is flooded with gratitude, love, kindness, inspiration, wonder, amazement, and of course, sadness that it’s over.
But really, it’s not over. It’s just beginning.
What is Your Healthcare Dream? #whatifhc
Do you have a vision for a better health care system? How do you want to see patients incorporated in our healthcare system?
Stanford Medicine X is tackling this question at 3:40pm (~6:40pm EST) with the #Whatifhc a panel, led by an exceptional group of patient advocates, doctors, and experts.
They’ll be taking questions and comments directly from Twitter. Have something to share? Use the hashtag #whatifhc and #medx to participate in the conversation!
My #whatifhc: What if every doctor-patient relationship was a working partnership? What kind of improvements in health literacy and patient compliance would we see as a result?
What is your healthcare dream?