Q:What do you love most in the whole world?
Oh my goodness, what a question! I gave this a lot of thought…
I love most that I’ve found ways to enjoy life. I’ve never really known what that’s like before, both before and after I got sick. I love my life more than I hate my pain…most days.
Maybe that sounds really cheesy or abstract (or like a load of BS, and some days it might be), but it’s true. We have a saying here at FSU that we’re “living the dream!" and for the first time ever in my life, I feel like that’s true. I feel like I’m living the dream this year.
Living the dream and telling arthritis to kiss my ass at the same damn time~
A Special Birthday, A Special Gift: Rare Disease Day
I was born on leap year. February 29th, 1992.
And for the past four years, I’ve hated and dreaded my birthday. For one reason or another, there were tears shed each year on my birthday. Whether it was due to pain or not-so-awesome people I used to call friends, birthdays kind of sucked. Honestly, I’ve been dreading today for a few weeks now.
And yet, my birthday is a special day, and not just because it only comes every four years. It is Rare Disease Day (which falls on the 28th when it’s not a leap year)—a day close to my heart. Friends and family laugh about me having three rare diseases, being born on leap year, and being a rare disease advocate a “cosmic joke.” At this point I suppose I’m inclined to agree :)
Having three rare diseases, having no rare-disease literate doctor, and having so few treatment options defines all aspects of my life. It defines what I do with my day—including my birthday—and this year I wanted to stop the string of depressing birthdays I’ve had for the past few years and do something meaningful for Rare Disease Day instead.
Only, someone else did that before I even had a chance. A fellow Stanford ePatient, a IBD/Crohn’s Disease advocate, and rare disease advocate, Carly Medosch, surprised me this week by representing me at Rare Disease Day at our capitol. It was a complete surprise.
Carly printed out my recent blog post regarding Rare Disease Day and took printouts with her to the capitol, where she has handed them out and shared my story with state representatives and other legislative aides.
And then, this: Carly and MedX ePatient advisor/blogger AfternoonNapper
And then, this: a lovely woman from Florida who has agreed to share my blog/blog post with her congress people (!!!!).
And THEN, this:
This is Jonny Lee Miller. He plays on Sherlock Holmes on CBS’s Elementary (shoutout to him also being in Trainspotting, I’m a fan), and he also runs a NPO for a rare disease. He spoke on a panel today for Rare Disease Day, advocating for others, and was kind enough to wish me a happy birthday and read my blog(!).
Little did he know, that the prosthetic leg he used as a prop in this season’s episode two was my grandmother’s prosthetic leg. CBS purchased the leg from my family this past fall. Life is really freaking unbelievable that way, isn’t it? My grandmother would be so proud that her prosthetic leg ended up in the hands of a rare disease advocate who works alongside me and spoke on behalf of me and many other rare disease patients. She would be so proud.
The kindness of my MedX family, my friends, my new LSH family, has just been completely overwhelming. Driving home tonight, all I could think about is how painful this month has been physically, and yet, it was full of nothing but positive news, new opportunities, and new people.
Thank you Carly, Sarah, Jonny Lee Miller, Global Genes, and the rest of you for making this week and this birthday one I will hold near and dear to my heart. I can’t tell you how much it—and you—mean to me.
Tomorrow I will still be handing out 100 Global Genes rare disease awareness ribbons as planned, only now with less anxiety and sadness re: my birthday and an unbelievable amount of gratitude and love instead.
Please follow Carly, Sarah, and the #wrdd14 hashtag on Twitter to keep up with this week’s Rare Disease Day events, and don’t forget to take a picture raising/joining your hands to show that you care about rare. I will be posting mine later today :)
Thank you for making this day and this week so special. I’ve never felt more like I belong and more loved in my whole life. I am sitting here writing this with tears—happy tears!—and I mean it. This community on tumblr, twitter, in person, online—you all mean so much to me. Every person that reads this blog has made this journey possible. And I love you all for it, I really do.
Particularly awful pain (understatement) + pneumonia + pleurisy = muted personality. It’s like my brain just goes NOPE, you gon’ shut down until this is over~ focus is lost and I become this quiet, awkward person who is constantly medicated or distracted.
Three weeks off of kineret went from being frustrating to horrible over the past four days. I can handle a flare and I can handle being sick, but no kineret and this sick at the same time just doesn’t work for me (though I feel like I’m doing better today re: infections, finally).
I just want to feel like myself again. I started to get me back—Emily—I started to get my life breathed back into me. I want to enjoy people again. I want to get on top of my classes/studying again. This semester has been rough for my body. It’s incredible to me how fast things go downhill. I was fine. And then I wasn’t. There was no slow transition into me doing poorly. I was finally coming out of the new-routine-induced-flare and then I woke up with the flu. And here we are, 3 weeks later. I know I’ll get back to a good place, but any setback in quality of life is emotionally devastating—no matter how small or short-lived it might be.
I can’t say I cry or get too emotional over this whole chronic-illness situation very often anymore. Occasionally, yeah, but less than a year ago. It’s become my ‘new normal,’ but I’ll be damned if I’m not having a total sob fest (do not recommend with pneumonia, by the way, not a fun time). Sometimes, this just sucks. It’s okay to whine, moan, and cry about it. So that’s what I’m going to do for now. I hate these diseases so much. Autoimmune and autoinflammatory diseases can kiss my ass.
Someone please find a cure so that we can avoid devastating infections and flares. So that myself (and others) don’t ever have to spend another second at 1am uncontrollably shaking with pain the way I am right now.
Live With Lidoderm: Chronic Pain DGAF About Your Plans
It’s amusing to me that I’m going to do a live hangout in 3 hours about burn out, compassion, and self care, and I’m in so much pain that I can barely get myself up off the couch—feeling totally blue and burnt out. I was just texting one of the other panelists, and it dawned on me—I need this panel just as much as anyone else watching. Self care is a process. You have to learn and practice self care. It’s an art form. Mastery takes years—maybe even a lifetime.
I may be doing this live hangout with lidoderm on my face, seriously. Chronic illness/chronic pain doesn’t care what plans you’ve made or what appearances you have to make. You guys know that better than anyone.
I hope you’ll all watch tonight. We’ll be talking about how easy it is to get burned out when you’re a ‘professional patient’—from both a treatment standpoint and an advocacy standpoint—and why self care is critical for both patients and providers (medblr community, I’m looking at you). I’ll be sharing a little bit of my own self care story as well.
"We" being a diverse panel—from chronic pain patients to cancer patients. We’ll also have Dr. Becker Schutte, a licensed psychologist who works with chronic illness patients. This is a must-watch panel if you’re struggling with compassion fatigue, depression, anxiety, burn out, self care—you name it.
We’ll be taking questions live, so watch and send in your q’s—we’ll answer them!
The live video stream will automatically post to Stanford’s MedX Live page at 8:30 pm EST. ’See’ you all tonight :)
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,
Off to California for Stanford MedX!
Today is the day! My flight leaves in two hours! I’m spending the day in San Francisco exploring with a fellow ePatient and I am SO excited for this week! It’s going to be an incredible 7 days full of mind blowing information and amazing people to learn from.
Stay tuned for a queued post on Thursday evening.
Have a great week!
Baby Steps Forward, Bigger Steps Backward
I attempted a run tonight— the first run since I struggled with pleurisy. The first run in three weeks.
It was brutal. It felt like I’d never been active before in my life. I could not get up to a jogging-pace. My lungs just aren’t the same. I know it is going to take time, both for my lungs to adjust and for me to adjust to this new gym. I know that three weeks of only mild activity means I have to start from square one. I know I need to focus on the small victories, not the setbacks.
But I did not anticipate it being so hard or losing so much strength.
On the plus side, the three weeks of taking it easy (and perhaps prednisone) completely resolved my stubborn tendonitis.
Baby steps, right?
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
I had a particularly difficult day emotionally, mentally, and physically.
I haven’t been sleeping well (was waiting for my prescription to come from my mail order pharmacy) which just breeds a cycle of anxiety. I’ve got so much going on with fall semester, moving into a new apartment, the cost of physical therapy and some of the other treatment options I’d like to try, just a lot buzzing around in my brain.
Between that, the addition of Methotrexate, and a high pain level, it all caught up with me today. I even skipped my run/walk.
But, today is done and hopefully, tomorrow will be kinder.
Enjoy this music. The Dodo’s are excellent. Take a moment. Breathe. Relax.