Category Archives: Awareness

This Week: Help Me Rally for Migraine Research!

Next Saturday, October 7th, two awareness organizations are teaming up for a huge and important event that is especially close to me. Miles for Migraine and Runnin’ for Research (yus, alliteration) are hosting a national Migraine and Headache Awareness Race Day. My partner Eric and I are participating and raising funds – and you can help!

Why I really, really care about this event:

Migraine is egregiously underfunded relative to the damage it does. This disease touches one in four families in the U.S. and directly affects the bodies of 12% of the population – including children. (Personally, I was 3 years old when I was diagnosed). Apart from inflicting severe pain and a wide range of neurological symptoms, Migraine steals from us the most valuable prize – time.

 

Eric the running man.
Despite the widespread and devastating impact, Migraine receives a despicably small amount of attention in the research and medical world. There is still no cure. Researchers are unsure of the cause. And in 2015, the National Institute of Health spent just 50 cents on Migraine research per person with the disease. I have no effective treatment, so in 2015 I lost 365 days to Migraine, while the NIH spent just 50 cents on me.

Awareness is the First Step Towards Research

Increasing Migraine awareness is the first step to increasing funding from NIH and other researchers. Too many people think of Migraine disease as a “headache” and that stigma has real effects on the amount of respect – and, ultimately, funding – that Migraine receives.

My supportive and wonderful partner Eric Smith and I are running (maybe walking) a goal distance of 5 miles each on October 7th and raising funds for research while we do so. We appreciate every dollar donated to this cause that means so much to us and has impacted so many millions. (*Note: Eric will be picking up my slack, so if I’m too ill for even a mile he will do 10. He’s mostly on board.)

To support us, visit our fundraising page here.

100% of proceeds will go towards Migraine research. Thank you for donating, sharing, and doing what you can to help out.

Every penny, every kind word means a lot

When I first got sick, I was afraid to talk to people about my attacks because it seemed so weird and really hard to understand. But since I began writing on this blog, sharing, and over-sharing my experiences, I have received nothing but kindness and support from the people in my life and from strangers.

I appreciate every kind word and every one of you who takes the time out of your day to read and try to understand the struggles of one young woman – struggles that resonant and ripple far beyond us.

Together I hope we can make a small difference and bring a little more light to a community constantly in the dark.

Thank you from the bottom of my heart.

strength of the chronically ill

I See You: A Letter to the Chronically Ill

To the woman with a migraine serving me coffee:

I see you. I see how you are trying not to squint beneath the fluorescent light. I see how hollow your smile is. Despite your best efforts, I see the pain that you are trying so hard to hide.

Three years ago, I would not have noticed the physical pain beneath the face of a passerby.

I would have dismissed her drooping eyelids, hint of irritation, and shoulder rubs as signs of a late night or early morning. Now, I have experienced enough pain that I see it in others, and I recognize intimately the steps they take to carry on despite it.

The woman at the coffee shop and I are not alone in our pain. We aren’t even a rarity. According to the Center for Disease Control, 113 million Americans have at least one chronic illness.  And a whopping 76 million Americans live with pain, according to the National Center for Health Statistics. This pain affects more than just our bodies. It affects our mental health, our social lives, our jobs, our families, our identities, our relationships. Chronic illnesses and pain are so prevalent and far-reaching that they affect who we are as a society.

The Quiet Strength of the Chronically Ill

Along with 76 million other people in this country, I wake up most mornings in pain and go to sleep most nights in pain. When I make plans, I do so cautiously, never forgetting that I may have to back out at the last minute. Some days I pay so much attention to the symptoms and moods of my own body that I forget to look around me at the people and places I love.

The truth is, chronic pain makes you feel weak, weary, and, at times, completely broken. To some in the outside world we may even look weak and broken. Our days are too often spent on medications, appointments, special diets, and self-care instead of on building our careers or social lives.

Our aspirations and accomplishments look different from those of our healthy peers. It takes an intimate look at the life of a person living with chronic pain or chronic illness to see that everything that appears to make her weak is really making her strong.

chronically ill
Like an alpine lake, the chronically ill remain calm and graceful after even the worst of storms. Image: Angie Glaser

Those of us with chronic illness experience the same joys and stresses as healthy people. We do so, though, with the added pain, symptoms, and stresses that come with a body that doesn’t quite work the way it is supposed to. The stress of every head cold, every birthday, every argument with our partners is filtered through a lens of pain.

I truly believe that this added pain and stress – an obstacle that often seems insurmountable – makes the chronically ill strong. I truly believe that the chronically ill are stronger than most of our healthy peers. We have to be. We have no choice. Pain is an unignorable companion that steals our days and our energy. Yet, we survive. Better yet – we thrive.

Those of us with chronic illnesses prepare meals, close business deals, teach school, ride public transportation, raise children, take care of our families and pets, remember birthdays and anniversaries – all while fighting an invisible battle. We swallow our pills and our pain and our pride, and we live the best way we can – illness be damned!

For the most part, our efforts go unnoticed. Sometimes they are unappreciated even by ourselves. Anxiety and depression are common among the chronically ill. Sadly, for some, the unending pain and lack of help or hope becomes too much. Suicide among those with chronic illness or pain is way too common and not acknowledged often enough.

It is so important for those of us in pain to remember that:

Yes, Pain Does End!

There is always hope for a new treatment, a new perspective, a new purpose.

hope for the chronically ill
After every winter comes spring. Image: Michael Levine-Clark

Being ill or in pain does not, in ANY WAY, diminish your worth or value as a person. It doesn’t matter how many hours you spend watching Netflix or whether or not your pain is recognized by your boss or your doctor. You matter, and you are a lot stronger and more remarkable than you realize.

 

To the man or woman with chronic pain reading this post:

I see you. I see the strength beneath your tears. I see your purpose rising above your pain. I see your efforts, your losses, your grace. I see what is invisible, and I see how you grow despite its  efforts to tear you down. I see you. I am with you.

I am proud of you.


Resources

To Learn More About Chronic Illness:

– The Growing Crisis of Chronic Pain in the US

Facts and Figures on Pain

For Women in Pain:

For Grace

To Support Migraine Research:

American Headache Foundation

Migraine Research Foundation

Coping with Chronic Pain:

 American Chronic Pain Association

 For Grace Master List of Resources

Grief and Chronic Pain


Feature Image: Jerald Jackson

 

Last Day to Endorse Chronic Migraine Life for the WEGO Health Activist Awards!

I am so honored and excited to be nominated for a WEGO Health Activist Award for my blog! I started this blog a year ago as a way to slowly untangle the threads of this illness and make sense of it all.

Writing about my experience with chronic migraines and chronic pain has been more rewarding than I dared to dream. I have connected with so many people who are tying to untangle their own knots, and we have been able to help and support each other. I am honored to a part of the chronic pain community because we are a community that constantly builds each other up, no matter how much pain we are grappling with ourselves.

Getting the infusion!
One year ago – getting a CGRP antibody infusion. The infusion did not work,  but it  helped inspire me to start this blog

If you have read and enjoyed this blog, please consider endorsing me for a WEGO Health Activist award. Today is the LAST DAY to vote, so don’t wait! The nomination page is filled with some of the strongest, most eloquent, and most tenacious chronic illness warriors. You don’t have to just endorse one of us – spread the love!

Click here  for my endorsement page.

Click here to see all of the nominess.

Thank you!

Rule Your Headache Disorder

Happy Migraine and Headache Awareness Month 2016!
This is my first year participating in this campaign and I am thrilled that the theme chosen for this year’s awareness month focuses on living well with migraines rather than solely awareness aimed at the general public. This year’s theme is Rule Your Headache Disorder with a special message to be actively engaged in your treatment and lifestyle choices. Like many migrainuers, I know from experience that ignoring my headache disorder, letting my doctor call the shots, or slacking off with lifestyle modifications can very quickly lead to a situation where I feel out of control. Alternatively, learning about migraines, keeping communication open with my doctor, and continuing my commitment to lifestyle modifications puts me in a position to best rule my headache disorder.

Combat Pain with Creativity

One of my coloring creations
One of my coloring creations

Active engagement in our treatment plan extends far beyond the doctor’s office, just as the tentacles of migraines disease reach far beyond our own bodies. Each and every migrainuer is different and experiences migraines differently, but diet, sleep, exercise, and, my favorite, stress management are all important pieces of the management puzzle. Keeping stress at a minimum is crucial both between and during migraine attacks, but it is difficult to say the least, especially when you are dealing with severe pain and nausea.

One of the best and most fun ways to combat pain and relieve stress is through the creative process.  Coloring, cooking, walking, reading, writing, painting, photographing, birding, listening to music… Any tasks that involves focus and imagination quiets down the part of the brain that controls stress, the amygdala, and causes a stress-relieving response throughout the entire body.

“Fostering imagination as an adult is one of the most meaningful things to do for your mental health,especially if you are dealing with the high levels of stress that comes with chronic pain. Illnesses changes lives, abilities, and perspectives, and creative activities help tap into a deeper part of ourselves. It is precisely the creative and playful part of ourselves that we need to connect most to in order to process the experience of pain and best cope with it.”

To read more about combating pain with creativity, please check out my recent article for the Peace Naturals Project.

A special thank you goes out to Teri Robert for her work with Healthcentral for Migraine and Headache Awareness Month. Be sure to wear purple all month to show your support and keep your eyes open for headache and migraine hashtags on social media.