It’s Rheumatoid Arthritis Awareness Week in the UK!
Their awareness materials are fantastic—showcasing patients of all ages and walks of life, and symptoms beyond joint pain. I’ll be posting them daily up until the 22nd.
You can follow NRAS here:
It’s Rheumatoid Arthritis Awareness Week in the UK!
Q:Just wanted to share a great story I live on the second floor of an apartment building and my neighbor who I've only met in passing just brought my delivery of biologic meds from the front door to my apt door, not knowing how messed up my knees have been and that that climbing those stairs for my temperature sensitive package was my Mount Everest today. What he did as an afterthought nearly brought tears to my eyes.
This is beautiful! A little act of kindness can change someone’s entire perspective and make someone’s whole day. You deserved it, anon.
Pay it forward!
Brace Yourselves, It’s Final Exam Time: Flare Edition!
Can you believe it’s that time already? I swear this semester was the fastest yet.
Final exams suck for most (is it safe to say all?) students, but this time of year is especially brutal when you’re dealing with a chronic disease and/or chronic pain. On the plus side, I updated my Final Exam Help post!
So you’re flaring and tackling finals? Here’s what you need:
- Excessive amounts of caffeine and Tylenol
- A positive attitude or at the very least, a good sense of humor
- My updated Final Exam Help post
- The rest of my studying with brain fog-related posts
That said, I will be on Twitter commiserating with other chronically ill students and likely Instagram whining about a stats final that is worth 35% of my grade, but will not be blogging aside from the occasional checking-in post. Feel free to join me and the rest of the students on Twitter—we’d love to support you, too.
Good luck! Keep calm, carry on, and may the odds be ever in your favor.
Ebb and Flow: Coming to Terms With Grief and Chronic Illness
It’s been a while!
I decided to take a blogging/advocacy break in the beginning of October—the week before World Arthritis Day. Initially I only anticipated taking a week, maybe two…and that turned into over a month. Stepping away from social media, blogging, and advocacy was the healthiest decision I could have made for myself at the time.
I took all of my energy and devoted it to self care: caring for my illness, my heart, my mind, my body. I started a new diet. I’ve lost some weight despite high dose prednisone. I’m meditating more. I’ve got the beginnings of a plan for medicating myself out of this Kineret plateau. Finally, I am doing well academically. Exceptionally well, actually, for the first time since coming to Florida State. I’m finally feeling more capable both physically and cognitively of managing my courses
so much so that I am considering picking up my bio minor again and my PA requirements like a crazy person.
But on the other hand, I’ve been struggling to find a balance. There is a very, very fine line between sacrificing your health for your GPA, and I am always walking that line not-so-gracefully. To be completely honest, I’m not satisfied. I’m not happy with my life. I’m bitter and resentful over the loss of potential, time, and opportunities that my peers seem to have an endless supply of. I’m anxious, stressed, and overwhelmed, feeling like I don’t know what I’m doing or how the hell I’m going to (physically) get to where I see myself going. Amplify those normal 20-something feelings by a chronic disease and you get the picture.
So right now I’m working on me. I’m working on redefining Emily, outside of Still’s Disease, chronic pain, advocacy, and so on. I don’t really know who that is right now—I feel like I’ve lost touch with her. I’m sorting through a ton of crap that’s not so arthritis-related, but pretty painful, and I appreciate the support, privacy, and respect as I take this time for myself. I’m trying to rediscover and rebuild while also coming to terms with a boatload of grief, and as I’m sure you can imagine, that takes time, energy, and focus.
Life with chronic disease means we are constantly redefining what it means to coexist with, battle against, and life in spite of our diseases. I am redefining what it means for me to live life to the fullest with the cards I’ve been dealt, while working on coming to terms with my latest limitations. Change is good, but change is hard. Grieving your health, grieving for a profound loss of potential, and learning how to let go is no small undertaking, especially when that grief reemerges at the start of every major life transition. And really, it’s not a process that ever ends. We repeat the stages of grief and acceptance in cycles as our disease activity ebbs and flows, popping up in new aspects of our lives. It’s confusing to celebrate life’s little (and big!) victories while grieving at the same time, and that’s about where my head is at right now: conflicted and being pulled in two very different directions. For those of you who have faced any kind of depression, whether it be chronic illness related or not, you know how exhausting it is to trudge through the tough stuff and come out the other end.
Today I received an email letting me know I made the Stanford Medicine X 2013 ePatient “Honor Roll.” It was the first spark of excitement related to advocacy that I’ve had in quite a few weeks. I logged on and started writing this post. I’ve been on Twitter more. I am easing back into this and I’m going to take it slow for now (or maybe not, we’ll see if I end up diving right back in), so I appreciate and thank all of you for having some patience with me lately.
I will post shortly with some final exam links and help for my fellow chronically ill students who are preparing for that ever-wonderful time of year ;)
Stay strong and take care of yourselves (and each other!),
Patient NeXt at Stanford Medicine X: The New Patient
Discussing the evolution of the patient relationship (patient-patient, patient-caregiver, and patient-doctor) and the role technology and empowerment can play to involve patients in their own care.
I am honored and humbled to have been able to share my story, experiences, and work with these other incredible ePatient advocates:
- Joe Riffe, Prosthetic Medic
- Jody Schoger, Women With Cancer
- Erin Moore, 66 Roses
- Chris Snider, Just Talking Podcast, To Be Sugar Free
I hope you watch and enjoy the stories, the discussion, the ideas presented here. It was a fantastic time and an amazing opportunity, one that I’ll always hold near to my heart.
Chris, our fantastic moderator, wrote a post about the experience and what it was like in the hour leading up to the panel. It’s worth reading.
One thing I really want to highlight: this is what Arthritis looks like. My legs were 2-3x their normal size. I put those shoes on only to be on stage, but I wore slippers for the rest of the conference. You can see the prednisone swelling in my face. I mention my pain level at one point not for dramatic effect, but to make an honest point. This is arthritis on stage, in the spot light. It’s always there and it is never just arthritis.
Jody, the fierce woman sitting up there? She has metastatic breast cancer and was in a whole hell of a lot of pain. Joe had been on his prosthetic leg far longer than he was supposed to. Chris’s monitor went off mid-panel (which you can see us laugh about). For none of us did our diseases disappear for that panel. And that is partially what our advocacy work is about: removing the masks, getting real.
The Balancing Act of ePatient Advocacy and Self Care
I’ve started having new symptoms…and old symptoms that haven’t come around in quite some time. Yesterday I felt a pop and then what I can only describe as an explosion of glass in both my knees. It very seriously felt like a glass dish had exploded within my leg. I have had mini-explosions from that point on. Every muscle fiber is on fire. My glands are swollen and GI symptoms are lurking. Fatigue is worse than normal.
Whine, whine, whine. I know that I have been both slacking on finding a new medical team and slacking on the self care. I also know that my disease tends to flare harder during mid-Fall.
There are days where this pain will swallow you up whole. It’s only 9am, but I know today is one of those days for me.
Last night was the first time in a long time that I felt both completely defeated and overwhelmed by my disease.
Overwhelmed because Autumn always seems to hit the Autoimmune Arthritis community the hardest.
Overwhelmed by the number/content of messages in my inbox (though I love hearing from you). Overwhelmed by the now 29,461 people subscribed to this blog just through Tumblr alone (which is humbling and amazing for me, but that’s also a lot of eyes). Fellow MedX ePatient/Podcast extraordinaire/Diabetes advocate Chris Snider recently shared similar thoughts on his blog re: managing advocacy and self care:
For the ePatients living with chronic pain, for example, there are never enough spoons in the day to carry out a list of ordinary tasks but if you factor in the weight of an entire community that sees you as a leader (and maybe even role model) the pressure can get quite overwhelming.
Typically, this is my sign to take a little break: disconnect from Tumblr, Twitter, the community, and just care for myself.
I compromise and undermine my own advocacy work, what it means to be an ePatient, if I compromise on my own self care.
So that said, it’s time for a time-out, probably right after World Arthritis Day? I really have no idea, but if I lay low for a while and don’t respond to messages, please understand.
See you soon and take care of yourselves when you need to,
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.
They don’t tell you about the quiet moments.
The quiet moments at 2 am when you are overwhelmed with anger— with hatred— for your situation.
The quiet moments at 2 am when you are flooded with helplessness, panic, desperation to escape the body that imprisons you.
The quiet moments at 2 am when you are drowning in your envy to live the way your peers do.
No, they don’t tell you about those moments when you are diagnosed. But really, do they even know those moments exist? Do they know you lie in bed after a night spent laughing with friends, still desperately wishing, hoping, bargaining with your god or the universe for something more than the body you are settling for?
There’s no guide book for getting through these moments. They’ll tell you to be positive, not to give your energy to self-pity, to keep your chin up. But they don’t tell you what to do when you can’t escape your skin; when keeping your chin up or plastering on a smile does not erase the tears nor the heartbreak of not being able to live the way you want to.
They don’t tell you about the quiet moments.
*Double Exposure courtesy of Li Hui