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!
There is a thin line between a “new normal” with active inflammation (I am never entirely pain or symptom-free) and a “big” or “full on flare. For the past few days, I’ve been riiiight on the edge of crossing that line. My fatigue caught up with me in a way it hasn’t in quite some time and my GI symptoms have resurfaced. It’s not uncommon for me to flare when the summer heat (and my stress level) starts to get intense, but I know where this is headed.
So today, I quit.
I quit a commitment I made to a volunteer position a few weeks ago.
It was demanding, ~9-10 hours a week + the studying for the training. It was challenging me and I really believe I would have benefited from sticking it out. But, something had to give.
Learning how to take a step back without feeling inefficient, incapable, incompetent has been an enormous challenge for me. I’m still learning. Last month, I reached out to friends to ask them to take the lead on certain projects. Sent emails to certain mentors/leaders to ask them to support me taking small steps back. It feels inherently wrong—I have spent my life swimming against the current; to suddenly change course mid-swim feels wrong. But the way I grew up was “wrong.” I don’t always have to swim against the current. I don’t have to struggle—there is not always success or strength in the struggle.
I want to give 100% to Medicine X. I want to give 100% to advocacy. I want to give 100% to academics. I want to give some serious effort to my social life and community work. And perhaps most importantly—I need to give my body 100%. I can do these things, but it’s a delicate balancing act.
I did the right thing, made the healthiest decision for my body and mind, and this isn’t “failure” or “incompetence.” It is my new normal, and it’s okay to embrace my new normal instead of fighting it—even when others do not understand the way I delegate my time and energy.
I was able to see a health decline incoming and take proactive steps to (hopefully) prevent that decline from turning into a major downward spiral. That’s a little victory as far as I am concerned.
I am tired. I have been tired.
So I quit. I’m sitting this one out. Letting go. And that’s okay.
I’m wondering, how many of you struggle with finding balance? Do you struggle with saying “no” or taking on too much? How do you overcome this or learn to balance your priorities better?
Stanford School of Medicine Design for Health
The last Design for Health class of the semester will go live at 9PM EST/6PM PST here! My speech is in the first 5 or so minutes of the class, but please watch the duration of the program—it’s a fantastic watch for patients and providers alike. Med students, specifically, this is for you.
- Each class is accompanied by a live discussion online using the hashtag #MedX.
- We will be taking questions from twitter, so please tweet Chris Snider @iam_spartacus with your questions or comments.
- Med students/providers looking to preserve your anonymity: join under a pseudonym and send your questions—we need to hear from you, too, not just patients.
A huge thank you to everyone who submitted photos. unfortunately, I did not receive any input from health professionals or health students. But the patient responses were absolutely fantastic. I was unable to include them all, but the ones that didn’t make it in will be included in my speech slides in September.
I hope everyone will tune in,
Do you want your photo in my presentation at Stanford? Representing Tumblr Patients and Medblr at MedX
As mentioned, I am giving a speech at Stanford School of Medicine next week. Much of my speech will focus on giving patients a voice in our deeply flawed healthcare system and the communication breakdown between patients and providers. This means I’ll be sharing my story and discussing what it’s like to be invalidated by physicians for years, etc etc etc.
I would like to include YOU, the tumblr community, into my speech next week, and to do so, I want to include your photos in my presentation.
This is your opportunity to get your message across.
The challenge: take a selfie with a piece of paper. On the piece of paper, write or type a short message you would give to health care providers, designers, other patients, loved ones, and future health care providers/medical students.
Some examples might be "look outside of the box" or "listen more" or "I am the face of (whatever disease here)." Even something like “let patients help” or “I deserve to be heard” or “Do not invalidate my pain just because it is not visible,” whatever. Anything you want to communicate, you can.
This is an opportunity for you to say what you want to say and have it broadcast on a big platform—I really want your messages to be echoed through this speech because you have all been an integral part of my journey. I wouldn’t be doing this without the social support I get here.
I’d also like to extend the offer to medblr: med students and current providers: what do you want to say to ePatients? Of course you can send me a selfie without a name attached through a made up email address to preserve anonymity. Neither myself nor anyone watching the speech will know who you are or if you have a blog, etc. I will not be identifying anyone and the photos will be small—made into a collage. Your choice—the offer is there. Cough cranquis cough. Maybe the message is "we do not have all the answers" or "we are doing our best in a broken system," again—this is whatever you wish to communicate to your patients.
I would not have found my own voice if you had not let me foster it here in this community, so please help me echo the voices of all of us next week.
- All photos have to be sent to my email, firstname.lastname@example.org, by Monday evening to be included. Please include “Photo project” or something in the subject line!
Not Just Arthritis: Honoring Two Rheummates
Today the #rheum community lost two of its rheummates.
I’d like to take a moment and honor them. Maybe you pray. Maybe you just give them a moment of your time mentally. Whatever it is you do, please do it.
This disease is not “just arthritis.” It’s not just joint deformity and a bottle of Aleve. It’s vasculitis. It’s heart failure. Behind the statistics are real people leading very real lives.
It is never “just arthritis.” Patients like Emma and Ali deserve more. They deserve better.
Please send your love to their families in a tweet, comment, or just a passing thought.
June 5th Ignite Speech at Stanford School of Medicine MedX Design for Health
I am so excited to announce that I will be flying out to Stanford School of Medicine to speak on June 5th! You can watch live by tuning into MedX Design for Health at 6pm PST (9pm EST), but more importantly, you can join the conversation via a live chat using the #MedX hashtag. We will be taking questions from the class as well as online audience, so please tweet me or the moderator (whose twitter I will link shortly) your questions or comments.
I’m honored to have this opportunity to share my story and I hope everyone here in the Tumblr patient community will watch and join the conversation. We’d love to hear what you have to say—your story and your input matters.
More details to come soon.
Today was a big day.
Today I received a 3 month supply of my most expensive medication.
Kineret is the main medication that keeps me walking, breathing, living. Up until this shipment, daily syringes for 1 month cost me $1500 out of pocket (this was with insurance and funding assistance programs).
Today, my invoice says $100 for three times the amount of injections. No one should suffer because a biologic or chemotherapeutic medication is too expensive.
Today, I am so grateful.
Q:I've had people with no medical problems suggest that I caused or can stop my autoimmune disease with diet while completely unaware of the fact that I can't eat most foods to begin with. And the people that think the pharmaceutical industry wants to keep me sick. Oh and the people that seem to think that "negativity" can make you sick. Do you have any advice on how to deal with the holistic healing people who think they know more about my body than my Doctors and me?
This is really tough. I get this constantly in person and from people online through my Tumblr inbox, email, and blog comments so I know exactly what you’re up against.
Everyone handles this differently so I can tell you what works for me, but I can’t say it’ll work for you.
For me, it really comes down to who is making the comment. New friends that mean well? Usually I take the opportunity to educate them and then drop the subject. If it comes up again, I make it very clear that while I appreciate their efforts, I am doing absolutely everything in my power to treat my disease(s) and have a highly qualified team of doctors behind me. Sometimes I will say something along the lines of "thank you, I will look into that" and it ends the conversation.
Other times, I’ve called people out. When strangers make comments, I usually ignore them. I can’t tell you how many emails I get about apple cider vinegar and energy healing. It helps that I have radically overhauled my diet and lifestyle and yet, I still have active inflammation/flares. It helps that I can throw that back in the faces of those who cross the line and attempt to invade my boundaries. If someone has really crossed the line with me, I will usually pose a question along the lines of "if this were the cure for my disease, do you not think it would be highly regarded by medical professionals and do you think I would still have this disease?"
So my question to you, anon, is how do you respond already? I don’t personally find that responding with anger ever helps an in-person situation like this de-escalate. My biggest piece of advice is either use the opportunity to spread awareness and educate, or use a one-liner and shut the conversation down/enforce your boundaries.
You know your body best, and how you treat your body and your disease is in your hands. Do whatever you need to do to enforce those boundaries and maintain your wellbeing (without hurting others, of course).
Does anyone else have any suggestions? Leave your comments in the Disqus box below.
Moving Forward Despite Arthritis.
The end of this semester feels monumental in a way that I am not sure words can quite explain.
Spring semester is always the semester that really wears me down each academic year. By the end of it, my nerves, emotions, and body are completely fried. Motivation nowhere to be found. Maybe it’s the weather. Maybe it’s the stress that comes with January 1st out-of-pocket costs being reset. Maybe it’s the new semester routine or the stress of the holidays. In reality, it’s probably a little of everything.
This year’s spring term was no exception—with pleurisy, pneumonia, and the flu, missing nearly an entire month of class, rushing a social group on campus, 14 credit hours, picking up a minor and a new major, and not having been out of a flare since November.
I spent less time second guessing whether or not I should be pursing PA school. I spent less time questioning whether or not I’m intelligent enough to be taking organic chem. I spent less time accidentally shedding tears in front of professors (though it still happened twice) while in a flare freak-out during a week when I could barely walk.
Instead, I took more steps outside. Literally. I was unable to run from December to March because of poor health. When I felt well enough to try, I stopped training on the treadmill and moved to the trails. I’m feeling balanced enough to manage the terrain changes and incline, and I am so grateful for that. It has become my safe place.
I took more steps out of my comfort zone—an easy place for me to stay in when I’m not doing so well physically. I interviewed for leadership positions. I put myself out there. I have met so many beautiful new people, new friends. Positive people who lift me up and make me laugh.
I’ve been accepted on a scholarship to Medicine X 2014—only this time, I will be giving an ignite speech on my journey through a mystery diagnosis and rare disease. Me and my homegirl Nikki Estanol will also be presenting a panel at MedX, but more on that later.
I pushed myself harder than I’ve ever pushed myself before and managed a 4.0 term GPA, making the President’s List. My GPA (and thus my career goal) is no longer in the toilet; my scholarships no longer in jeopardy. I have a set graduation date (I was supposed to graduate this semester) and established relationships with some amazing professors who were (and I’m sure will continue to be) incredible mentors to me. I’ve finally reconciled what I want to do, what I love to do, and the diseases that make living a daily battle. I can see the intersection of ePatient advocacy and clinical medicine staring me in the face, waiting for me.
No semester has been academically, intellectually, emotionally, or physically challenging the way this one has been. I’m exhausted, but I’m wonderfully satisfied.
It’s hard to take steps forward when your body holds you back. Sometimes I’m not sure I’m taking enough steps forward, or taking them fast enough (and sometimes, I beat myself up for this). But at least I’m moving forward.
For the first time—ever—I am actively living, not just existing. Less wondering, more doing. I’m not sitting on the sidelines, letting chronic pain and these god awful diseases keep me from going down the more difficult or seemingly insurmountable path. Even when it is easier, perhaps more responsible, or more “compliant,” for me to sit back…
I’m moving forward. And those steps, no matter how small, are worth celebrating.
Thank you for letting me share these steps with all of you.
Here’s to a summer of healing, personal growth, and less painful days for all of us,