A Letter to Myself

It's been 15 years since I was in a car accident that altered the trajectory of my life. I've written and posted about it multiple times over the years. Each time differs, as the grieving and healing processes continue. 

Note: links to previous posts about the anniversary of the car accident at the end of this post.

This year feels different. 

The past year has included a Pain Rehabilitation Center (PRC) program, Emotional Awareness and Expression Therapy (EAET) course, and attending a writing support group, all of which have provided me resources and opportunities to make important changes in my life and within myself. I will share more about these in future posts. 

Today, I want to share a letter I wrote to myself. I've written multiple different letters to myself over time. These letters offer compassion, guidance, and encouragement to myself, reminding me that I can and will make it through whatever hard thing I'm facing. They serve as a gentle guide, map, or light for me to get through the difficult times. Here is one such letter. 

My dear self,

I know you’re struggling and your heart feels heavy. Pause and take a breath. 

Feel the air come in through your nose and out through your mouth. Notice how that feels in the body. 

You are going to get through this, just as you have every hard thing before. 

Breathe. 

Rest. 

Identify and acknowledge the emotions and core beliefs that come up. 

Be gentle with yourself. 

Write. Writing helps to gain clarity and release hurt better than anything else. 

Pray. Ask God to come alongside you and provide what you need in each moment. He is faithful. 

Reach out. Jeremy is your strongest supporter in life. Allow him, and others, to be there for you. 

Use the skills and tools you’ve learned and strengthened over the years: breathing, healthy coping and distraction, and resilience. 

You are so resilient! You persevere through challenges. You are a warrior. 

Listen to music. Look for beauty. Bake a cake. Play a game. Write, write, write. 

Do these to help you feel like you again. 

Breathe and let go of what you’re able to. 

I’m so proud of you! I'm proud of you for never giving up, for doing the hard work, for always holding onto hope as well as you were able. 

Keep going, you’ve got this.

Love, Me

Photo by Jamie Valendy

I wrote this letter during the PRC program in 2022. I wrote it on October 10. That day has a history of pain and redemption, over the years.

• It was the day that I was in a car accident that changed my life. 
• It was the day that I started seeing my amazing headache specialist.
• It was the day that I wrote this letter to myself and graduated from a pain rehabilitation program. 

A lot has changed in the past 15 years. I have picked up the pieces of a shattered life, more than once, and chosen what to keep and what to let go of. I have fought battles within (and out) that few or no one knows about. I have worked hard to become the person I am, and I will continue to keep (re)building and growing. 

I've got this!

If you'd like to listen to me read this letter, you can! I was asked to share on a recent US Pain Foundation Building Your Toolbox talk about the importance of writing. Click here to listen on YouTube (https://youtu.be/AolqG1FvoUw). I read at 24:00.

If you'd like to read more, here are some links: 

• The Battle Begins
• 3-Year Anniversary of Car Accident
• 4-Year Anniversary of Car Accident
• Reflecting 12 Years Post Accident
• 13 Years Later, Now

Suicide Prevention Awareness

September is National Suicide Prevention Month. September 10 is World Suicide Prevention Day.

Photo by Thought Catalog on Unsplash

Suicide is something that hits close to home for so many people, yet we often don't talk about it. There is a lot of shame, guilt, and stigma associated with mental health and suicide. 

We need to talk about our mental health. 

I've shared some about my experiences with depression, anxiety, post-traumatic stress disorder (PTSD), panic attacks, grief, loss. It's all part of my journey and it's important to share so others know they're not alone. 

You're not alone.

My cousin died by suicide in 2020. It's a heartbreaking and complicated loss. The stigma around suicide affects how we process the loss and grieve. For me, I found that it's further complicated in light of experiencing deep depression and suicidal thoughts at various times in my own life. 

I do my best to speak about mental health, chronic illness, and suicide with honesty, vulnerability, and language that reduces the shame, guilt, and stigma associated with them. Life is hard enough without these piled on. 

You matter. You are enough. You are not alone.

*The following resources include additional information, support, and helplines*

Awareness

• The American Foundation for Suicide Prevention (AFSP) highlights the Talk Away the Dark campaign: "There are countless ways you can help Talk Away the Dark by initiating open conversations about mental health; speaking up and making sure more people know what research reveals about how we can help prevent suicide; lighting the way for those in distress to feel comfortable asking for help; and knowing what to say to support survivors of suicide loss and provide them the care they need." 

About Suicide

• Globally, more than 700,000 people die due to suicide each year, that's about one suicide every 40 seconds. (WHO, Suicide Prevention Fact Sheet and Suicide – TWLOHA)
• In the U.S. (2021), there is a suicide every 11 minutes. (Suicidology, Fact Sheet)
• Suicide is the 10th leading cause of death for Americans. (CDC, Fact Sheet" and Suicide – TWLOHA)
• Suicide is the 2nd leading cause of death for Americans ages 10-34. (CDC, Fact Sheet" and Suicide – TWLOHA)
• Males die by suicide four times as often as females, but there are three female attempts for every male attempt. (Suicidology, Fact Sheet and  (Suicide – TWLOHA)
• In 2012, the US Department of Veteran Affairs (VA) released a data report for suicides among veterans and active military members, indicating that an average of 22 die by suicide every day. (22Kill and Mission22)

Resources

• American Foundation for Suicide Prevention (AFSP)
• World Health Organization (WHO) (mental health and suicide data)
• American Association of Suicidology (AAS)
• National Alliance on Mental Health (NAMI)
• To Write Love On Her Arms (TWLOHA): "A nonprofit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide."
• The Jed Foundation: "A nonprofit that protects emotional health and prevents suicide for our nation’s teens and young adults, giving them the skills and support they need to thrive today…and tomorrow."
• The Trevor Project: "We provide information & support to LGBTQ young people 24/7, all year round."
• 22KILL (One Tribe Foundation): "Restore the value of life by empowering veterans, first responders, and their families."
• Mission 22: "Our Veteran non-profit offers programs at no cost to all participants. We focus on three main pillars—Veterans, families, and community."
• Talk Away the Dark: Resources to learn the warning signs, know the risk factors, and have real, open conversations with those you care about.
• 988: We can all prevent suicide: Know the risk factors, warning signs, help others in crisis, and change the conversation around suicide.

Helplines

• 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) at 988 or text TALK to 741741. For those that are deaf and hard of hearing, use your preferred relay service or dial 711 then 988. Spanish is also available.
• Crisis Text Line (24/7): text TALK or AYUDA to 741741 or chat online to connect to a trained crisis counselor for free, 24/7.
• NAMI (National Alliance on Mental Illness) Helpline (M-F 10am-6pm ET): 800-950-NAMI (6264) or info@nami.org
• Veterans Crisis Line (24/7): dial 988 (press 1), text 838255, chat online
• Additional 24-hour helplines (including child abuse, domestic abuse, sexual abuse)

If you, or someone you know, is in suicidal crisis or emotional distress, please call the 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) at 988 or text TALK to 741741. For those that are deaf and hard of hearing, use your preferred relay service or dial 711 then 988.

Shades for Migraine 2020

Today, June 21, is Migraine Solidarity Day (aka, Shades for Migraine).

Shades for Migraine is a global campaign hosted by the Association of Migraine Disorders to promote migraine awareness and show support for the 1 billion people living with migraine disease worldwide. 

The collaborative campaign is simple to participate in: wear a pair of sunglasses of June 21, post a photo to social media with the hashtag #ShadesForMigraine, and challenge others to take part, too.

"Show you care, wear a pair."

Quick shoutout to my Dad: Happy Father's Day! 

© 2020 Jamie V.

 

© 2020 Jamie V.

© 2020 Jamie V.

Headache on the Hill Fundraising Event

Taking part in headache disorders advocacy is an important part of my journey living with chronic pain. While I participate in advocacy work throughout the year, one of my favorite events is Headache on the Hill (HOH) - you can follow the link to read about my HOH 2020 experience.

HOH is an annual event that brings together a large group of advocates in DC to share our stories, and call on lawmakers to recognize the impact and take action to reduce the burden (individual and societal) of headache disorders.

The Alliance for Headache Disorders Advocacy (AHDA) organizes the annual HOH event and covers one night hotel for each attending advocate. Most advocates must cover the remaining travel costs out of their own pockets.

In order to support the HOH event and provide assistance with travel scholarships for advocates to participate, Miles for Migraine is collaboratively* hosting a first-annual walk/run/relax fundraiser event from June 29 to July 7. 

There are a few different ways you can show your support: 

• Donate (any amount is greatly appreciated)
  
• Participate by walking, running, or relaxing (from 6/29 to 7/7)
  
• Share this post on social media 

© 2020 Jamie V.

This link takes you to the event page: HOH walk run relax event. From there, you can Pledge a Team (Chronic Migraine Warrior), Donate to a Participant (Jamie Valendy), or Register (and join my team). 

This link takes you to my team page: Team Chronic Migraine Warrior. From there, you can Make a donation or Join my team.

Please join me!

"Each one of us can make a difference. Together we make a change." - Barbara Mikulski

*Participating non-profit organizations for this event include:

• Miles for Migraine
  
• Coalition of Headache and Migraine Patients (CHAMP)
• National Headache Foundation (NHF)
• Clusterbusters
• The Headache and Migraine Policy Forum (HMPF)
• Headache Cooperative of New England
• Headache Cooperative of the Pacific
• Southern Headache Society
• American Migraine Foundation (AMF)
• US Pain Foundation
• Danielle Byron Henry Migraine Foundation
• Association of Migraine Disorders (AMD)

Wear Purple & Headache at Work

June 1 is the first day of Migraine and Headache Awareness Month (MHAM). Today, we’re highlighting a headache awareness initiative and headache at work. 

© 2020 Jamie V.

Wear Purple to Work (at Home)

The National Headache Foundation (NHF) created an initiative to help promote migraine and headache awareness: Wear Purple to Work (at Home). On June 1, wear purple and share a photo on social media to show solidarity for the 40+ million people in America living with headache disorders. 

When you share on social media, please use the hashtags: #MHAM #MHAM2020.

Headache at Work

Work often includes facing a slew of headache and migraine triggers that can stack and result in increased attacks: bright lights, computer screens, strong odors / scents, loud noises, stress, rigid schedules and deadlines, the list goes on. 

Many people are working from home during the pandemic. For some, work being moved to a virtual / from home format is proving to allow the flexibility needed to be a more productive worker and have improved quality of life.

It’s unclear what the work landscape will look like, as more workplaces decide how to move forward. It remains important to recognize the need for employer accommodations for those living with headache disorders. Hopefully these months of virtual workplaces will provide the evidence needed for companies to consider offering employees more options moving forward. 

Once workplaces bring people back to the office, the Migraine at Work campaign provides tools and resources for employers and employees to utilize. 

"I don't have a dis-ability, I have a different-ability." - Robert M. Hensel

Migraine and Headache Awareness Month (MHAM) 2020

June is Migraine and Headache Awareness (MHAM) Month. This year’s theme is: You need community. #MHAM #MHAM2020 #YouNeedCommunity

If you're interested in learning more or getting involved, Migraine Headache Awareness Month is a great resource for information regarding upcoming activities being hosted by various individuals and organizations within the headache disorders community.

I’ve participated in Migraine and Headache Awareness Month, since it started in 2012. Some years, I’ve been able to participate more than others. One thing that hasn’t changed, is the excitement of coming together with others in the community to share our stories and do what we can to raise awareness, decrease stigma, and make the invisible visible. 

In the past, there have been daily blog and social media challenges. I’ve enjoyed participating in those ways, but I’ve also struggled with feeling guilt and shame for not being able to keep up. That’s something I continue to work on, as the pressure to perform is self-inflicted. 

I’m not sure how this year’s awareness month will look, from my participation standpoint. Perhaps I’ll take the opportunity to share some photos and stories from previous advocacy activities and even some attacks (I’ll be sure to label with the date, so it’s clear when they were). Whatever it looks like, I’ll write and share… and, I’ll be proud to be part of a community of people that “get it.” 

Here’s how to find me and follow along: Blog – subscribe by email.  Facebook.  Instagram.

“One of the most important things you can do on this earth is to let people know they are not alone.”

 - Shannon L. Alder 

Headache on the Hill: Behind the Scenes

As I began writing about my Headache on the Hill 2020 experience, I found a post that was written but never posted from last year's event. The following post is from 2019, though much of it is timeless.

Photo by Ian Schneider on Unsplash

In writing about my experience and the asks of Headache on the Hill (HOH) 2019, I realized that there's another side that needs to be shared.

Every person that went through the process to participate in HOH has their own story of the event. Some people weren't able to make the trip because of health, financial, or other reasons. Some pushed to make the trip, but were then unable to attend training and/or their meetings on the Hill because of health. Some pushed to participate, and then crashed hard afterward.

Headache diseases can be unpredictable. And, everything that participating in a lobbying event like HOH entails adds up and can be difficult to do while living with the uncertainty of chronic health conditions.

Sometimes you can push through, and sometimes you can't. There is no shame in that. Oh! But, I know that those unable to attend their meetings were overwhelmed by enormous emotions.

Traveling alone

I haven't traveled much alone, since I became chronic after my car accident in 2008. My husband and I have traveled, but my only solo travel has been to visit and stay with family. Attending HOH was the first non-family related travel that I ventured out on my own. I was both excited for the independence and anxious about managing on my own. Knowing that I had friends also attending HOH helped put my mind at ease.

The day before the HOH training was a travel day for me. I flew across the country alone. Time in a plane is hard on the body, and I was hurting badly, when I arrived in Washington, D.C. I made it to the hotel, checked in, and collapsed onto my bed. A friend of mine invited me to dinner and encouraged me to come, despite my exhaustion and pain. I appreciated being around people that get it, and I know that my body needed an actual meal after a day of snacking. I made it back to my room after dinner, but I was completely spent. The weather outside was worsening, and my head and body pain mirrored that.

Reaching out for support

I reached out to my sister, in tears. The exchange of messages revealed the spiral that pain often takes me on.

"When I hurt, my brain catastrophizes. I'm trying to not be overcome with thoughts about not being prepared tomorrow, should I take meds today, if I take today I can't take more tomorrow, etc... It's just a spiral I go through. It's hard."

My sister doesn't experience migraine herself. She has a truly beautiful heart, though, and has taken note of things that I've mentioned help me in the past. She recommended heat... all I had were hand warmers, but she encouraged me to use them to try to help manage the pain (specifically my neck pain).

One thing that I appreciated was that she made a couple simple recommendations (heat and ice), which can sometimes slip my mind. She acknowledged what she wasn't equipped to guide me on. Through it all, she offered me what I needed most... herself. Knowledge that I wasn't alone. Prayers being sent up on my behalf. Reminders that my my painful groans are wordless prayers that reach our Father, when we cannot find the words. Sharing a beautiful song to speak truth to my heart in a way that it could hear it. The song she sent on that night: Fear is a Liar by Zach Williams.

The person that was supposed to be my roommate wasn't able to make it because of a status migraine, but she did her best to try to help from afar... even going so far as to try to get some supplies delivered to me to help me through the attack.

I ended up treating the migraine attack, and made it through the night. My mind and body felt the effects of the battle that had raged on the previous day, but I was able to attend the training day. After training, I gave my body rest and quiet.

The day we went to the Hill for our meetings, one of the people in my group was having a bad migraine attack. I offered support in the ways that I was able to, and checked up on him throughout the day. We shared that he was missing the day's meetings due to a migraine attack, which highlighted the impact of this disease.

I've observed, heard others' stories, and experienced first-hand, the love and support that this community has among its members. There is an often unspoken understanding that we all experience pain and other symptoms, allowing for deeper connections and support in ways that can feel like home. There is such great power and hope in knowing that we're not alone.

“Give your weakness to one who helps.” - Rumi

Headache on the Hill 2020

This week, I joined a group of 174 advocates from 45 states in Washington, DC at the 13th annual Headache on the Hill lobbying initiative, which is organized by the Alliance for Headache Disorders Advocacy (AHDA).

2020 Headache on the Hill

This was my second time participating in Headache on the Hill (Headache on the Hill 2019: My Experience). We spent Monday in training and preparing for our Hill visits. On Tuesday, we loaded onto buses to head to the Capitol for a group photo, before splitting up to head to our congressional meetings.

Team Arizona

Team Arizona

The group for Arizona was made up of six amazing advocates: Kerrie Smyres, Dr. Amaal Starling, Amy Tees, Jenn Tingwald, Jamie Valendy, and Don Vanderpool.

We had a full schedule, meeting with the offices of: Senator Kyrsten Sinema, Senator Martha McSally, Representative Greg Stanton, Representative Ruben Gallego, Representative Paul Gosar, Representative David Schweikert, Representative Ann Kirkpatrick.

Our meetings went well, and we were able to make some connections with the staffers we met with. I never cease to be amazed at the prevalence of headache disorders. Everyone has some connection to them. It reminds me that my voice and story speak for so many others that live with migraine or other headache disorders... and that gives me a push to continue advocating.

Migraine Impact

The impact that migraine has on individuals, families, and society is profound. Sharing my story with legislators gives a face to the disease, while sharing statistics speaks to the pervasiveness and burden of migraine and other headache disorders. 

Migraine is a prevalent and serious public health issue:

• Migraine is the 2nd leading cause of disability in the United States (1).
• 47 million Americans will have migraine attacks this year (1).
• 5 million Americans with migraine will have 10 or more days with headache per month (2).

Migraine is part of the Chronic Pain Crisis in the United States:

• There are more than 1.2 million emergency department visits for migraine annually in the United States (3).
• 59% of emergency department visits in the United States for migraine include opioid treatments (2).
• Opioids are not indicated for the treatment of migraine (4), and opioid use may increase the frequency and severity of migraine attacks (5).

Migraine disease management requires patient access to headache medicine physicians:

• At least 8 headache medicine physicians are needed per 100k people with migraine (6).
• There are currently only 1.2 certified headache medicine physicians per 100k people with migraine in the United States (7).

There are only 574 headache specialists in the United States (6). Given the prevalence and burden of all headache disorders, the disparity of current and needed headache specialists is devastating.

The 'Asks'

The United States is facing a huge shortage of doctors, including specialists (8). The Opioid Workforce Act H.R.3414 / S.2892) would fund 1,000 new physician training positions in addiction medicine, addiction psychiatry, and pain medicine.

However, there is a problem with the bill language. It explicitly supports "approved residency training programs in... pain medicine." However, residency training programs do not exist in pain medicine. There are only approved fellowships in pain medicine. There is also no specific mention of headache medicine, which also has only fellowships.

The asks:

• Urge amendment to H.R.3414 / S.2892 to ensure support of US physician training in:
• ACGME-accredited pain medicine fellowships
• UCNS-accredited headache medicine fellowships
• Co-sponsor the bill and support pain medicine and headache medicine fellowships.

Advocacy Work

Taking part in advocacy work is an important part of my journey living with chronic pain. Being surrounded by others that are passionate about coming together as a unified voice for all people living with headache disorders fills me with hope. There is power in sharing our stories and making connections with others. I'm honored to have been able to participate in Headache on the Hill, again; and I look forward to continuing to do so. 

"Unity is strength... when there is teamwork and collaboration, wonderful things can be achieved." 

- Mattie Stepanek

Sources:

(1) GBD 2016 Headache Collaborators (2018). Global, regional, and national burden of migraine and tension-type headache, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet. Neurology, 17(11), 954–976. https://doi.org/10.1016/S1474-4422(18)30322-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6191530/.
(2) Blumenfeld, A., Varon, S., Wilcox, T., Buse, D., Kawata, A., Manack, A., Goadsby, P., Lipton, R. (2011). Disability, HRQoL and resource use among chronic and episodic migraineurs: Results from the International Burden of Migraine Study (IBMS). Cephalalgia, 31(3), 301–315. https://doi.org/10.1177/0333102410381145. https://www.ncbi.nlm.nih.gov/pubmed/20813784.

(3)   Friedman, B. W., West, J., Vinson, D. R., Minen, M. T., Restivo, A., & Gallagher, E. J. (2015). Current management of migraine in US emergency departments: An analysis of the National Hospital Ambulatory Medical Care Survey. Cephalalgia, 35(4), 301–309. https://doi.org/10.1177/0333102414539055. https://www.ncbi.nlm.nih.gov/pubmed/24948146. 

(4) Loder, E., Weizenbaum, E., Frishberg, B., Silberstein, S. and (2013), Choosing Wisely in Headache Medicine: The American Headache Society's List of Five Things Physicians and Patients Should Question. Headache: The Journal of Head and Face Pain, 53: 1651-1659. https://doi.org/10.1111/head.12233. https://www.ncbi.nlm.nih.gov/pubmed/24266337.

(5) Thorlund, K., Sun-Edelstein, C., Druyts, E., Kanters, S., Ebrahim, S., Bhambri, R., Ramos, E., Mills, E. J., Lanteri-Minet, M., & Tepper, S. (2016). Risk of medication overuse headache across classes of treatments for acute migraine. The journal of headache and pain, 17(1), 107. https://doi.org/10.1186/s10194-016-0696-8. https://www.ncbi.nlm.nih.gov/pubmed/27882516.

(6) Begasse de Dhaem, O., Burch, R., Rosen, N., Shubin Stein, K., Loder, E. and Shapiro, R.E. (2020), Workforce Gap Analysis in the Field of Headache Medicine in the United States. Headache: The Journal of Head and Face Pain, 60: 478-481. https://doi.org/10.1111/head.13752. https://www.ncbi.nlm.nih.gov/pubmed/31985046. 

(7) https://www.ucns.org/Online/Diplomate_Directory/Online/Diplomate_Directory.

(8) The Complexities of Physician Supply and Demand: Projections from 2017-2032, AAMC, April 2019. https://www.aamc.org/news-insights/press-releases/new-findings-confirm-predictions-physician-shortage.

Headache on the Hill 2019: The Asks

In my previous post, Headache on the Hill 2019: My Experience, I shared about my personal experience at the annual advocacy event. Below is what I wrote at the end of my time in DC. The majority of this post, however, will speak to our 'asks' for 2019.

"The last few days have been an amazing, exhausting, powerful experience. I joined a wonderful group of patients, advocates, headache specialists, and other supporters in Washington, DC for the 12th annual Headache on the Hill. We met with lawmakers to raise awareness, request increased research funding commensurate to the burden of headache disorders, and demand equal protection and just coverage under Social Security Disability Insurance. I was honored to participate - it was especially rewarding to be working alongside my headache specialist. I will continue advocating for all those affected by headache disorders, and look forward to future visits to the Hill."

This year, we asked our members of Congress to support increased research funding for headache disorders from the National Institutes of Health (NIH), and to support requests directing the Social Security Administration (SSA) to revise disease listings for determination of disability benefits for those disabled by migraine and other headache disorders.

Our 'ask' for the National Institutes of Health (NIH) was to prioritize research funding commensurate to the burden of headache disorders. Congress has already appropriated funds for the HEAL (Helping to End Addiction Long-term) Initiative to address the need for non-opioid therapies for chronic pain. Some of those funds have been set aside for research in specific areas (back pain and hemodialysis pain). Our request was that some of the appropriated funds be allocated specifically for headache disorders, in proportion to the disease burden.

• Migraine is the 2nd leading cause of all global disability (1).
• Headache disorders are the least funded NIH research area among the most burdensome US diseases (2).
• Migraine research comprises just 0.6% of all NINDS extramural funding (3).

Our 'ask' for the Security Administration (SSA) was to seek equal protection and just coverage under Social Security Disability Insurance (SSDI). When a person applies for SSDI benefits, they are faced with an unfairly arduous process. When that person is filing a claim for benefits due to a headache disorder, they are often initially denied. What I didn't know until Headache on the Hill is why...

The SSA uses a "Blue Book" listing of impairments, when making decisions for disability benefits. If one's impairments meet or exceed the listing, benefits are granted. However, there are NO listings for any headache disorder!

When a person applies for disability due to a headache disorder, the claim is compared to impairment listings for epilepsy. There is no guidance on how to apply an epilepsy listing to headache disorder impairments, and the two aren't sufficiently comparable.

This is unacceptable, given the prevalence and impact of headache disorders:

• 1 in 7 Americans will experience a migraine attack this year (4).
• Active migraine attacks disable with impacts comparable to severe dementia or amputation of both legs (5).
• Only 37% of Americans with chronic migraine are employed full time (6).
• Socioeconomic status decreases as migraine prevalence increases (7).

Our 'ask' was to reform the Social Security Administration (SSA) Blue Book for fair adjudication of headache disorder claims. We requested that the SSA offer clarification for how SSDI claimants with headache disorders should apply current Blue Book listings, ensure that all listings are updated at least every five years (it was last updated in 2016, but before that was 1985), and add a listing for headache disorders at the earliest opportunity.

UPDATE: On August 26th, the SSA released a new Ruling or SSR with guidance specific for "Evaluating Cases Involving Primary Headache Disorders."

More information about Headache on the Hill 2019:

• Alliance for Headache Advocacy HOH 2019
• American Migraine Foundation HOH 2019

Sources:
(1) GBD 2016. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systemic analysis for the Global Burden of Disease Study 2016. Lancet 2019;390:1211-59, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)32154-2/fulltext
(2) https://report.nih.gov/info_disease_burden.aspx 
(3) https://report.nih.gov/categorical_spending.aspx
(4) Global Burden of Disease study, 2016, https://www.ncbi.nlm.nih.gov/pubmed/28919117.
(5) Salomon JA, et al. Disability weights for the Global Burden of Disease 2013 study. Lancet Glob Health 2015;3:e712-23, https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)00069-8/fulltext.
(6) Stewart WF, et al. Employment and work impact of chronic migraine and episodic migraine. JOEM. 2010;52:8-14, https://www.ncbi.nlm.nih.gov/pubmed/20042889. 
(7) Stewart WF, et al. Migraine prevalence, socioeconomic status, and social causation. Neurology. 2013;81:948-55, https://www.ncbi.nlm.nih.gov/pubmed/23990405.

Headache on the Hill 2019: My Experience

In February, I joined a group of 160 advocates in Washington, DC at the 12th annual Headache on the Hill lobbying initiative. The event is organized by the Alliance for Headache Disorders Advocacy (AHDA). Healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

This was my first time participating in Headache on the Hill. The first day was filled with advocacy issue training and Hill visit preparation. We learned more about what our 'asks' would be (I'll share more in a separate post, Headache on the Hill 2019: The Asks, if you're interested) and we practiced sharing our personal stories of living with headache disorders, so that we'd be prepared to approach and interact with our policymakers.

The following day, we all came together for a group photo and a policy meeting, and then we broke up into small groups to visit our respective congressional members' offices.

My group didn't have scheduled meetings until the afternoon, so we split up to rest until then. One of our group members was unable to attend meetings because he was dealing with a migraine attack. While I know that being unable to participate was in many ways just as excruciating, we carried his story with us and used it in our meetings as a powerful example of what living with migraine disease is really like.

One group member down, I spent the day partnered up with my headache specialist (Dr. Amaal Starling) to attend our scheduled meetings.

• Our first meeting was with a staff member, and we felt a lack of interest in what we were sharing.  
• Our second meeting ended up being part of a "roundtable" situation, which basically meant that there were multiple groups there during the same time-slot, but the Representative was there in person. He had some personal interest in headache / migraine, but was dismissive to me as someone living with migraine and focused his attention on my partner (as a healthcare provider). 
• Our third meeting revealed the misunderstanding and stigma of headache disorders, but was where we really leaned on the story of our missing group member, as it was his congressional district's office we were visiting.

Based on conversations with others that have attended Headache on the Hill before, my experience during the three meetings I attended were a bit different or rougher than "normal." It may have been a push into the deep end, but Dr. Starling and I worked well together in advocating for the headache community.

It was quite powerful to be surrounded by so many people with a passion for advocacy work. We were all on a single mission: to be the voice of all people living with headache disorders. We bravely shared our stories, to help others better understand what it's like to live with these diseases. I'm honored to have been able to participate, and I look forward to continuing to do so.

"There is no power for change greater than a community discovering what it cares about." 

- Margaret J. Wheatley

Upcoming Happenings

I wrote in Farewell, 2018! about having a word or phrase to guide and grow in during different times.

Along those lines, there are some exciting events coming up over the next few months. Here's a sneak peek, but I'll definitely share more.

Headache on the Hill (February 12)

Photo by Nerdy Rockson on Unsplash

Headache on the Hill is an annual lobbying event in Washington, DC, where healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

Miles for Migraine Walk / Run (March 2)

Miles for Migraine is focused on improving the lives of those living with headache disorders, by increasing public awareness, fighting stigma, and raising funds for migraine research. 

Migraine World Summit (March 20-28)

Migraine World Summit is a virtual event that will provide talks from "over 30 of the world’s top migraine and headache experts, doctors, specialists, researchers, scientists, geneticists, psychologists, authors, and advocates." The event is FREE (4-5 talks will be released per day, and will be available for free for 24 hours). If you can't listen during those dates, the Summit will be available for purchase. Click here, to claim your ticket for the 2019 Migraine World Summit.

RetreatMigraine (April 12-14)

RetreatMigraine is a conference focused on people living with migraine disease. It will provide "support, community, disease and treatment education, advocacy training, and complementary therapy experiences."

Headache on the Hill

Miles for Migraine

Migraine World Summit

RetreatMigraine

   

Chronic Migraine Warrior Returns

I have been away from my Chronic Migraine Warrior blog for quite some time... a couple years!

Over the past few years, I shifted my energy and focus away from the blog. During that time, I moved to a different state, took a closer look at all aspects of my health, and continued my patient advocacy work. Lots of change and learning!

I feel the nudge to get back to writing... and my blog is here and ready. Let's see what happens!

"Courage, above all, is the first quality of a warrior." - Carl von Clausewitz

Migraine World Summit - Order

Get your own copy of the 2016 Migraine World Summit today!

The Migraine World Summit has ended, but it's not too late to have access to information from over 30 world leading migraine experts, doctors, and specialists. If you're interested in finding out more, you can go to The Migraine World Summit. 

Get your own copy of the 2016 Migraine World Summit today!

Migraine World Summit

CLICK HERE

The Migraine World Summit started today. I just listened to the first lecture / presentation, and I found it very informative. The presentations are available free for 24 hours from when they are posted online. There is an All Access Pass that you can purchase, so that you can watch / listen at your leisure (part of the proceeds go to migraine research). They have a website and Facebook page, and it runs daily from April 15-20, 2016 - the schedule is available on the website.

*** If you do order the All Access Pass, please use THIS LINK (or click on photo above) so I get credit for referring you!

30 Things About My Life With Migraine

Kerrie Smyres started a "30 Things About Your Life With Migraine" meme to encourage others to share their experience with migraine. Migraine and Headache Awareness month is a great time to share, so here we go.

1. My diagnosis is: chronic migraine with and without aura.
2. My migraine attack frequency is: I have some level of head pain daily. 
3. I was diagnosed in: 2002 with migraine, becoming chronic in 2008.
4. My comorbid conditions include: depression, anxiety, fibromyalgia.
5. I take one medications/supplements each day for prevention and four medications/supplements to treat an acute attack.
6. My first migraine attack was: I'm not sure. The more I learn about migraines, the more I believe that I've dealt with them since childhood.
7. My most disabling migraine symptoms are: pain, fatigue, cognitive difficulties, aphasia, sensory sensitivities (to light, sound, smell, taste, touch).
8. My strangest migraine symptoms are: olfactory hallucinations.
9. My biggest migraine triggers are: weather changes, lights (especially bright and/or flashing), odors / fragrance / smoke, foods / food additives (bananas, artificial sweeteners, nitrates / nitrites, MSG).
10. I know a migraine attack is coming on when: I have difficulty controlling body temperature and moods, my ears feel hot and achy, increasing visual disturbance, certain cravings, aphasia, inability to focus.
11. The most frustrating part about having a migraine attack is: being suddenly unable to function well, and not knowing when one will hit or how long it will last.
12. During a migraine attack, I worry most about: how well my migraine treatment will work, and how long I'm going to be out of commission.
13. When I think about migraine between attacks, I think: please don't worsen today.
14. When I tell someone I have migraine, the response is usually: kind, but often indicative of the lack of public awareness of what migraine truly is.
15. When someone tells me they have migraine, I think: that migraine is so much more common than most people think. I also think about how I might be able to help them cope with migraine.
16. When I see commercials about migraine treatments, I think: how far we have to go (and how important it really is that we do so, every chance we get) to inform and raise awareness of migraine and the potentially debilitating affects this disease. 
17. My best coping tools are: my faith, distraction (often involving Netflix).
18. I find comfort in: my husband, my dog, my house, my support system (family and friends, both in person and online).
19. I get angry when people say: "It's just a headache," which is sometimes followed by,"Just take a pill and keep going / move on" and/or "It can't be that bad."
20. I like it when people say: a sincere, "You're in my thoughts and prayers."
21. Something kind someone can do for me during a migraine attack is: allow me to escape to a dark, quiet place. Ask if I need anything (water, food, blanket, pillow, to be alone, etc) to help make me more comfortable. Be patient with me, as it can be difficult for me to think, speak, and move.
22. The best thing(s) a doctor has ever said to me about migraine is: "I won't give up on you."
23. The hardest thing to accept about having migraine is: that it is unpredictable.
24. Migraine has taught me: to recognize the strength that I DO have. It is teaching me to have more patience, and to trust God more.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: "Be still, and know that I am God" (Psalm 46:10).
    
26. If I could go back to the early days of my diagnosis, I would tell myself: to prepare for things to be beyond difficult, but to never give up hope.
27. The people who support me most are: my husband, my support system (family and friends, both in person and online).
28. The thing I most wish people understood about migraine is: it's a genetic neurological disease for which, there is currently NO cure.
29. Migraine and Headache Awareness Month is important to me because: I feel that we need to speak up/out to raise awareness, increase research, and help correct misinformation.
30. One more thing I’d like to say about life with migraine is: that it's hard, but find yourself a support system and be your own best advocate to getting the care and treatment you need to live the best life possible.

You Are Loved (Don't Give Up)

"You Are Loved (Don't Give Up)" Watch the Josh Groban video below and listen to the lyrics. How does it make you feel? Which lyrics do you find especially inspiring?

https://youtu.be/EGLSk3AVcUU

What a beautiful song. Such powerful words. 

This song immediately brought to mind my relationship with God. He is always there. He is my strength, my comfort, my guiding light.

As I listened further, I thought of relationships I've grown over the years. I'm blessed to have people in my life that will help me:

when my load feels too heavy,
when I feel unheard or misunderstood,
when I get lost in the pain,
when I feel the light in me has been blown out. 

They are there to help lift me back up... to help me find hope. They remind me to look to my faith for grace, mercy, and hope. And, they hold onto hope, when I struggle to hold on myself. Their love, patience, and grace is beautiful and amazing.

I strive to be that kind of person, as well. 

When you feel invisible, unheard, misunderstood... you are not alone. Reach out. You are loved!

You Are Loved (Don't Give Up) by Josh Groban

Don't give up
It's just the weight of the world
When your heart's heavy
I...I will lift it for you

Don't give up
Because you want to be heard
If silence keeps you
I...I will break it for you

[Chorus]
Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I...I will be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I...I will shine to guide you

[Chorus]

You are loved
Don't give up
It's just the weight of the world
Don't give up
Every one needs to be heard
You are loved

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

My Hope

"YOUR Hope," What do you hope for most in your journey with Headaches or Migraines? Please share with us about what you hope for and why.

What I hope for most in my journey with Migraines is my life hope / goal: 

To faithfully follow God, allowing Him to work in and through me wherever I am and however He desires.

My life doesn't look the way I ever imagined. Chronic pain, especially chronic disabling pain, wasn't part of my life plan. But, life continues on, and I choose to participate in whatever capacity I'm able.

Regarding Migraine, I hope to improve my quality of life by continuing to learn, cope, share, grow. I want to make a difference... 

To help advocate for myself and others.
To help others know that they're not alone.
To help disseminate information about Migraine and other headache disorders.
To help raise awareness, educate others, reduce stigma, and increase funding for research. 

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Hope Lies in Dreams

"Hope lies in dreams," Interpret the Quote: Tell us what the quote on the image below means to you.

"Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams into reality." (Jonas Salk)

So, this quote immediately brings another quote to mind: "The future belongs to those who believe in the beauty of their dreams" (Eleanor Roosevelt).

I believe that allowing ourselves to dream and have hope for the future is important. Having lived with a disability now for over 6 years, I've come to find that my hopes and dreams for the future have changed... but, it's okay to change them!

I can envision a world in which Migraine has a cure. I know that it will take a lot of imagination and courage to reach a point of better understanding of the disease, and then to develop a cure. And, I will do my part in helping to realize that dream. I will continue to help educate myself and others about Migraine. I will continue to share my experiences with living / coping with Migraine. I will continue to contribute monetarily to Migraine research. I will pray for the Migraine community, as well as for the Migraine doctors and researchers out there. I will not give up on hope of a better future for Migraineurs.

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

What in Nature Brings You Hope?

What in Nature Brings You Hope? Tell us what things in nature bring you hope and why.

This ties into one of my recent blog posts, Birds of Hope. As I shared in that post, "Everything in nature is a beautiful echo and reminder of the greatness of our Father."

There's something so wonderful about nature. There's something mesmerizing about the simplicity, complexity, and interconnectedness of everything.

It's so easy to get wrapped up in the chaos of life. But, nature provides relief from the chaos. A place to slow down. You can enjoy the present moment, reminisce about the past, dream about the future... anything is possible because nature surrounds you with infinite possibility.

It's difficult to narrow down what in nature brings me hope, as so many do. What first comes to mind, though, is the starry night sky. There is nothing that can take me out of myself better than just looking up into the night sky. My mind is overwhelmed by the infinite power of our Creator; while simultaneously, my heart is overcome with the truth that our Lord, the Maker of the universe, loves and cherishes me. What an awesome God!

"For my part I know nothing with any certainty,

but the sight of the stars makes me dream."

- Vincent van Gogh

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Hope Lets Us Win

Hope Lets Us Win: Watch and listen to the video below of Brian McKnight's song "Win," and share with us which of the lyrics you believe.

https://youtu.be/2JhluGhzRrE

I just listened to this song for the first time, and the chorus has some words that stick out to me:

"I'll never give up, never give in / Never let a ray of doubt slip in / And if I fall, I'll never fail / I'll just get up and try again / Never lose hope, never lose faith / There's much too much at stake."

While I'd like to say that they're entirely true, I can't. Doubt slips in. I struggle with losing hope and faith. But, it's okay, as long as I don't stay in that place... as long as I continue to get up and try again.

Win by Brian McKnight

Dark is the night
I can weather the storm
Never say die
I've been down this road before

I'll never quit
I'll never lay down
See, I've promised myself
That I'd never let me down, so

[Chorus]

I'll never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place to show, I'm gonna win

No stopping now
There's still a way to go
Ohh, someway, somehow
Whatever it takes I know

I'll never quit, no, no
I'll never go down
I'll make sure they remember my name
A hundred years from now

[Chorus]

When it's all said and done

My once in a lifetime, will be back again
Now is the time, to take a stand
Here is my chance, that's why I'll

[Chorus]

Mmm, I'm gonna win

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.