Q:Does it ever make you frustrated that your diet didn't cure you? I cut out everything that people suggested and it didn't significantly change my joint pain. I feel like a failure in some way. I guess I had held out hope that changing my diet would do more for my autoimmune issues.
YES. Yes, I know that frustration all too well.
A diet not being a cure is not your failure. Your body did not fail! And the diet did not fail either! Diet is a great tool and treatment to help reduce inflammation—especially if you have specific food sensitivities—but it is by no means a cure. If a gluten/whatever-free diet could cure all autoimmune diseases, don’t you think we would be able to do away with biologics and other medications?
Does your diet have other benefits and is it worth staying on said diet for the benefits? If so, great. That’s a huge achievement—lifestyle change is always difficult.
I’m really sorry to hear that diet overhaul wasn’t a game changer for you. I know how hard that must be for you. I get where you are coming from—I don’t think I realized how much hope I had been holding onto until my own diet didn’t magically reverse my inflammation. But, that’s life. And that’s autoimmune for you. What works for some will not work for everyone. Remember that your disease and treatment is not a one-fits-all thing, and that the success of others (in this case, success with diet as a treatment) is not your failure.
I know it sucks, anon, I really do. If you ever want some other dietary resources, feel free to message me. Sending you a lot of love and wishing you nothing but the best.
It’s Rheumatoid Arthritis Awareness Week in the UK!
Again, I really have to commend nras-uk on their awareness materials. So glad to see awareness materials addressing not just fatigue, but the impact of fatigue—on sex, no less!
You can follow NRAS here:
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:
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.