Access Medicine X for FREE: Global Access Program

It’s that time of year again! The Stanford Medicine X Conference is less than one month away, and this year there’s a brand new program that allows patients and everyone to join in the conversation from the comfort of their own home! (i.e. from the couch, in your PJs!)

You can register for the FREE Global Access Program, which gains you access to all three days of the conference main stage talks and panels through a new high quality live-streaming broadcast.  The exciting part is, you can join in the conversation in real time via Twitter, using the hashtag #MedX. 

Medicine X is known for being the most interactive conference on social media, but what does that mean for patients? That means we get to interact directly with some of the world’s top doctors, designers, engineers, etc. who are all working towards the same goal as we ePatient advocates: patient-centered care. 

So why join? For me, Medicine X has been an opportunity like none other. They were the first to truly listen to my voice as an advocate, and help me elevate it - and not just me, but a continuing stream of patient voices. Medicine X further breaks down the barriers in healthcare, truly puts patients at the forefront of the conversation, and fosters new ideas and collaborations.

For more info on some of the great speakers, and subjects at MedX this year, check out The Afternoon Nap Society’s great breakdown on it!

If you have previously watched the live stream via YouTube, the same one will not be available this year, so you must register for the Global Access Program. Even if you think that you may just tune in for an hour or two, go ahead and get signed up so you can jump right in on September 5 - 7. I hope to see you all there, lending your voices to this ever-evolving healthcare discussion! Together, we can and ARE changing the face of healthcare. 

Also, if you’ve never seen it, check out my first talk as an advocate, at Medicine X in 2012

Posted on August 6 2014 with 2 notes

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My Health: A Work In Progress - Plus Giveaway!

Figuring out how to manage my disease is always a work in progress. I tinker on myself like an old man tinkers on his beloved classic car. Lovingly finding ways to care for it, finding just the right parts to keep it functional, and taking it out for a spin in the Sunday sunshine.

A couple years ago I decided I would do everything in my power to try and achieve better health. Having no control over my disease would often make me feel helpless, so I decided to take back the control.  I began controlling what I could, when I could, which gave me a feeling of ownership in my health. I was no longer someone that had a disease happen to them, I was a person living with a disease.

I outlined what I could reasonably control: diet & exercise (yes, I’m beating that drum), my attitude and outlook on life, emotional relationships, and a consistent relationship with my rheumatologist and therefore my meds.

My relationship with my rheumy is open and honest, to the point of sometimes frustrated tears, but more often tear-inducing laughter. When I recently told him it takes every bit of willpower just to take my meds for fear of side effects, that signaled to him that it was time to tweak the dosages. A work in progress.

I worked on telling those around me what I need. Scratch that, I am still working on telling those around me what I need. A work in progress.

I decided I wanted to be happy in life. That doesn’t mean I am happy everyday, that means that I try to be. I rekindled old goals, and set some news ones, focusing on what it meant to be ME in life. I’m still learning what it means to be me. A work in progress.

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Committing to keeping moving was the best decision I ever made.  Sometimes that means training for my crazy mountaineering goals, and sometimes that means simply walking outside my house for the day to water my plants.  A work in progress.

Maybe the best decision I made was to clean up my diet - for good. I will not preach veganism, as I honestly feel each person and disease is different, and therefore they need a different set of foods and nutrients. Diets are as individual as fingerprints. Regardless, cutting out the crud can help us all. Processed foods out - ‘food’ with strange ingredient lists had no place in my gut.

When I went full vegan on Valentine’s Day 2013 (a pure coincidence), I worried about energy levels and getting enough protein. I instantly started sleeping better, felt energized, and learned that veggies and grains have far more protein than we’re ever taught as kids. Don’t get me wrong, the BBQ loving Texan in me cries a little on the inside every time I pass a flaming grill, but I know how much better my body feels and that is motivation enough.

I took it one step further. I began using my food as medicine, researching what can help all my moving parts. I added chia seeds and flax seeds, experimented with dandelion greens when my liver was angry, and began eating blueberries and watermelon by the fistful to reduce muscle aches and pains. A work in progress.

Then a few weeks back, CheriBundi the self-proclaimed “cherry people”, asked me if I wanted to take their 7 day challenge. I’ve read for years about the anti-inflammatory effects of cherries, but avoided them in all of their plump red glory because I’m allergic - but only to fresh ones! So I thought, sure, couldn’t hurt! (The sceptic in me on full alert!)

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A lovely box arrived, and it took all my willpower not to consume half the products immediately. For the next 7 days, I was to drink 8 oz of tart cherry juice, and change nothing else. I fully expected to see no results in a mere 7 days. I went about drinking my juice, enjoying the tartness like a refreshing lemonade.

On day 6, without putting two and two together, I was marvelling to my hubby how for the past week I had been an athletic beast, with very little pain and swelling! Setting a personal record in my 5K time, hiking a hilly 8.5 miles, and blasting through an entire mile in the pool. I wasn’t even sore… Then it hit me like a ton of bricks - it’s the cherries! I downed day 7 with glee, and on day 8, I ransacked my local grocery store for more.

I share this experience because it’s important for us to listen to our bodies, and to keep learning what they need - both physically and emotionally. To create a relationship with ourselves where we continue to keep trying, because at the end of the day, trying is what keeps us going.

Do you want to try CheriBundi?? After my great anti-inflammatory response, my friends over there offered to do TWO giveaways! Simply comment below and tell me what your “Work in Progress” is. A new goal? A great book you’ve always wanted to read? Winners will be chosen at random on Friday June 27, 5pm PST!

Or if you can’t wait that long, use the code “HB2014” to get 5% off your order at CheriBundi.com!

Posted on June 18 2014 with 6 notes

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Vacation From Pain

Standing in a pulsing crowd, losing myself in an epic performance by Queens of the Stone Age, tears began to stream down my face.  Despite it all, I refuse to stop living.  In this moment, I was overwhelming grateful for that - and having a damn good time.

Some people go on vacation to rest, read books, and be surrounded by quiet. Seeing as that is the necessary norm in my life, my vacation from life needed to be anything but that. 

It’s amazing I made it to the desert at all for Coachella, a three day music and arts festival.  I have been fighting a wicked flare in my neck that’s been causing continual headaches and migraines.  All signs pointed toward canceling the mini-vacation.  My GP patched me up the day beforehand with four injections in my neck, and one Toradol shot to my bum.

I have been looking forward to this trip for months, and I was not going to let my disease steal this from me.

I brought a small arsenal of meds and medical gadgets, hoping for the best, expecting the worst. I fell somewhere in between.

Each morning I rolled out of crisp white linens, and into the salt pool at our hotel. Allowing the cool healing waters to calm my cranky body, the sun to warm my aching bones. I paid little attention to time.

I wrestled with the decision to get a disability armband, but at the urging of fellow rheum-mate, @chronicchill, I did so the second I arrived at the festival.  At first they were hesitant to grant it to me all, seeing my flowing sundress, obnoxious oversized straw hat, and neon pink lipstick.  I explained to her how rheum affects me, and that she was seeing the start of my day – the good part. I promised not to abuse the pass, but put my foot down and said I would need it as the end of the day rolled around.

Banded up, I wondered the massive acreage of Coachella, finding music and friends, and quickly became alarmed at my body’s negative response.  Within mere hours I ended up in the medic tent, fighting both inflammation and tears.  One of the EMT’s wives had RA, so he got it, and gave me a quiet space to ice my knees.

I was disappointed in my body.  I felt betrayed.  After all the hard work I have put in to getting stronger, I am not invincible.

In the medic tent I resolved I could stay there and let the surrounding music fence me in, or I could let it set me free.

When I am at home and in pain, music has the ability to transport me to a realm of distraction that pain can’t penetrate. 

Surrounded by some of my beloved musicians, I allowed the heavy beats of the bass to flow through me, taking the pain with it.  I floated on the pure glee of screeching guitar notes, and once-in-a-lifetime experiences – like hearing Beck cover Billie Jean. 

And when my knees became too swollen and immobile, I made my way to the disabled seating area – quite frankly, one of the best views in all of Coachella.  This time I did not become upset, but overjoyed at the small community of us there refusing to be defined by our limitations, but living life on our terms.

Rock on.

*Note: I did not drink the entire weekend, as alcohol is a trigger for my migraines and rheum. The Heineken band allowed me into 21 and over stages.

Posted on April 25 2014 with 15 notes

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Answers

Anonymous asked: What would you say to someone who is struggling to get a diagnosis? My rheumatologist believes me but has no clue what is going on. This is my 7th year of joint pain, swelling, stiffness and fatigue and I'm really starting to struggle now. I see my Rheumy for the first time in 17 months in May (long story but I fell off their patient lists) and I'm already scared!

Hi Anonymous,

I am very sorry to hear of your struggles. I completely understand as it took me 14 years to get an initial diagnosis. 

DON’T STOP! That is my first advice. You have to keep pushing for the answers you need. Some doctors don’t realize how difficult it can be living in no man’s land with no diagnosis. Communicate that that is what you need, a name for your pain.

I hope your rheumatologist is still treating you? Some medications can be diagnostic. Meaning, if you respond to them then that can help lead you to a diagnosis. 

Also, do all the research you can ahead of time. If you read something that sounds like you, take that idea to your doctor. Create a written list (or list on your phone like I do), and pull it out so your doctor can see it. That way they know you have questions and you won’t forget anything. 

Don’t be scared. I know how ridiculous that is to say, because it is near to impossible! But stress (as I’m sure you know) greatly increases symptoms. 

I’m glad your rheumy believes you, but if you feel that you aren’t getting far enough or anywhere with them, then a second opinion is definitely reasonable. It won’t hurt to talk to another doctor if you have one in the area. One may see something in your history and symptoms that the others don’t.

Keep your head up, do your research, and remember the entire #rheum community has your back! 

Hugs and be well,

Britt aka The Hurt Blogger

Posted on April 10 2014 with 2 notes

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Answers

Anonymous asked: I am 55 and was diagnosed 15 years ago with RA and have yet to find a drug that my body agrees with, so I am on Prednisone daily. Can't stand it and neither can my bones, now have osteoporosis. Would like to know what meds that are working for you?

Hi Anonymous!

I am very sorry to hear that you have been struggling for so long. I too am currently on prednisone and working on tapering off of it. It’s the drug we love to hate! 

I am currently on my sixth biologic, as I tend to burn through them quickly. Due to the severity of my disease, my body seems to outsmart the meds after 1-2 years. 

I am doing fairly well at the moment, even making a bid towards remission and for that I feel blessed! I am currently taking weekly sub-cutaneous Orencia, weekly Methotrexate injections (the one medicine that has consistently helped me), and I recently added Arava about a month ago. 

This is just what works for me, everyone is so different and so are their diseases. I would recommend you continue doing your own research on available medications. It never hurts to ask, and you never know what will magically start helping.

I also treat heavily with diet and exercise. I have been vegan for a little over a year, and it has made a massive difference. I don’t eat processed foods, sugar, and rarely drink alcohol. If you’ve never done an elimination diet, I would recommend that to see if there are certain “trigger foods” that are increasing your pain and inflammation - again, everyone is different!

I wish you all the best. Be well,

Britt aka The Hurt Blogger

Posted on April 10 2014 with 2 notes

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Answers

Anonymous asked: Can you tell me what doctor treats your migraines? I would love to know the medications that you use for for preventative and abortive. Thank you for sharing your story. Thank you, V

Hi Anonymous!

I have Complex Migraines, so mine behave a little differently. They sometimes present with stroke-like symptoms, loss of eyesight, slurred speech, and weakness in my arm. I can’t take triptans any more, so I went through a lot of trial and error.

My neurologist treats with daily Verapamil, which is a heart medication, which helps stabilize the rapid heart rate I tend to get with my migraines. I also take daily Namenda, which is an Alzheimer’s medication, and UCLA (my hospital) led research on using is experimentally for migraines. It literally gave me my life back.

When I get migraines, I use Fioricet and Tramadol, and if they’re bad Percocet. 

For homeopathic options, my East/West doctor got me to start drinking teas. I drink chamomile, fresh mint and basil (if I have it), alone or all together. You can also use peppermint oil on your pressure points for pain. Two things I can’t live without are flax seed therapy wraps (my Mom developed these when my previous favorite was no longer available!), and a still point inducer which hits the perfect pressure point at the base of my skull. 

I’ve also found physical therapy on my neck, as well as massage to be very helpful since I have cervical spinal arthritis. 

I hope this helps, and be well!

Britt aka The Hurt Blogger

Posted on April 10 2014 with 2 notes

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I am very excited to announce that I will be writing for HealthCentral.com’s Rheumatoid Arthritis section! My first post went up today, and you can find it here

Take a look around the site, as they have wonderful stories from other patients who are not letting their disease rule their lives! Please feel free to leave comments on the site - and I’ll get back to you! 

Thanks! -Britt

"I crawled to my parents’ room, somehow understanding in this moment that everything had changed." 

Posted on March 12 2014 with 9 notes

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Complex Migraines: This is What it Feels Like

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A migraine is not just a bad headache. It’s an inability to move, an inability to lie still. It is a complete inability to function. Remaining still, I am trapped in my pain, trapped with swirling thoughts. How long can I endure this? Wrestling with the thoughts, I can not let them win, for as they do my heart rate increases, and the thumping intensifies in my head. The only option is to pass out. Reduce one’s self to a medically and sanity preserving trance. I imagine this to be a similar result Marie Laveau induced in her Voodoo ceremonies. Rendering me a human both awake and alert, yet detached from my own self - my own pain. If I’m lucky enough to escape away into this trance, I hope for the outside world not to bring me back. A buzzing text on my phone is enough to create both cognizance and utter pain in the same moment. The flash flood of pain pouring into my skull, necessitating the need to move - the very thing that will make it even worse. But with movement comes the chance at relief. A well stocked medicine drawer with prescribed options, and because those fail so many times out of ten, a well stocked alternative arsenal. Magnesium, electrolytes, peppermint oil, chamomile and mint teas, a still point inducer, ice packs, always ice packs. My freezer of ice packs rotating faster than a carnival, certain choices more comforting than others. I grab the one my Mom made, because she made it. Because it’s exactly what I need. Heavy, sumptuous, cool, calming, and enveloping. I tell my brain to tell my feet to walk back to bed. My feet lurch in a ridged pattern, one turned out, the other not bending in time. Hands thrust violently into walls to keep my fragile body from slamming into tables, the floor. I grasp my head, waiting for the momentary rush of symptoms to pass. The lightening storm in my skull, twisting both speech and eye site. Momentarily blind, I make it back to bed. I lie down to calm the worsened pain that standing caused. Stabbing pain settles in my eye sockets, my thumbs reflexively jab into pressure points. My eyes will be bruised tomorrow from the involuntary thrusts. There is both a freight train and eerie silence in my skull. The kind of silence that makes you wonder if YOU will ever return from this. Can not think about that now. Stress makes things worse. For now I think of my breath, the cool on my forehead. I focus on these and will myself into another trance, for next time I come to, the horror might be gone. A migraine is not just a bad headache, but a momentary destruction of your life. But, life is never sweeter than when it passes. And this, I remember when I am in the trenches.

Posted on January 23 2014 with 24 notes

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Fighting Together

Yesterday I heard that elusive word “Remission” roll off the tongue of my rheumatologist with the hopeful weighty thud it deserves. After twenty-one years of living with autoimmune arthritis, I somehow never give up hope that maybe my turn at remission is next.

24 hours later I awoke to Methotrexate side effects, fighting to keep down the previous night’s dinner for two reason: a) hugging the toilet every week is getting old and b) I invested some serious spoons in crafting that delicious dinner. Stay in me you will!

This is what GETTING to remission looks like. Hell, or any dream for that matter. It is fighting your body tooth and nail for the thing you want most.

It is deciding in your mind and your heart that the immediate options laid before you are not good enough, and you’re willing to do some crazy stuff to get there. Like willingly inject and ingest meds that make you pray to the porcelain gods.

Our chronic community of staunchly determined smiles keeps me motivated, but this does not mean my own smile is always strong.

I am tired, scratch that - ridiculously exhausted all. The. Time. As are you.

Having mastered the “grin-and-bear-it” face out of pure necessity, I guess I should not be surprised when I meet people and they question the level of my disease activity.

Fighting my disease, means fighting to put a smile on my face, everyday. It means finding the energy to bathe, to tweet, to laugh.

This path to remission is a battlefield strewn with needles, unreturned emails & voicemails, and inappropriate jokes.

Tomorrow, I will wake up and fight to take another step closer to Remission. I have the strength to try again tomorrow, because you’re here with me.

We are stronger together, and I thank you for that.

Be well,
Britt

Posted on December 11 2013 with 13 notes

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Plum Prairie Giveaway! Heat/Cold Therapy Wrap & Bath Soak (click here)

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A couple months ago my chronic brother and I were lamenting that we could no longer find our favorite heat/cold wraps to help with pain.

Secretly, my Mom began plotting and wanted to find a way to bring this much needed comfort back into our lives. In an effort to solve this problem, she decided she could help all of us spoonies and Plum Prairie was born!

She developed high quality organic Heat / Cold Therapy Wraps, with a soothing weight to envelope a sore joint, and comforting mild scents, while keeping costs low because frankly we all have enough medical bills!!

This was one of the biggest acts of love I have ever been shown, and I am excited to share a holiday giveaway!!
Head on over to her Facebook page and give it a “Like” to enter to win a medium size heat/cold therapy wrap in your favorite fabric and scent, and your choice of soothing bath soak!! Details are on the page!
Thank you Mom - for easing my pain, helping me sleep better, and being just crazy enough to help as many as you can along the way!

Posted on November 29 2013 with 5 notes

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