In Loving Memory of Jenn Tingwald

My dear friend, Jenn Tingwald, passed away unexpectedly on July 2nd.

I’ve been experiencing the full spectrum of grief. I have tried turning to writing, as it’s always been how I process my emotions and experiences. As I’ve found, though, words are often insufficient to express the fullness of universal human experiences… including, grief. This may be a long, bumpy post; but, I want to share some things I’ve written since I heard the news of Jenn’s passing. 

Words in the Moment 

Today, I found out that Jenn Tingwald passed away last night. I don’t know how those words together can be true. I can’t wrap my mind around it. I know that she was in and out of the hospital a lot over the past few months, but how is she gone? When I read of her passing, my heart broke and my body collapsed. We messaged earlier this week. She wasn’t well, but she was a warrior… like she always was. 

How do I even find the words to describe what I’m feeling? 

I’ve lost people in my life, from drifting away to death. 

This loss is different than others. 

Of course, it hurt badly when my grandparents passed, but they were ill for years beforehand. There was much grieving, sometimes for years, as there were a series of losses before the final one. 

This was different. 

This was completely unexpected. 

Jenn had a lot of health challenges, but she always made it through… until she didn’t. 

I know that grief is a process. I know that the waves will continue to come. Waves of disbelief, sorrow, overwhelm. The waves will vary in size and frequency, but they will continue. 

Today, it’s waves of disbelief and overwhelm. I can’t grasp it, and then it swallows me. It’s such a difficult part of being human. All day, I’ve sobbed and keep saying, “I don’t understand.” 

I know that a lot of things I do will remind me of her, as we shared so many ups and downs together. Living with chronic pain (struggles, successes, treatments, disability, etc), Mayo Clinic, advocacy work (including, Headache on the Hill and Miles for Migraine). Right now, that seems overwhelming. I'm reminding myself that each of these is an opportunity to respond with gratitude for our friendship and move forward with courage and perseverance, knowing she's with me in spirit.

Every ounce of me knows that she’s finally out of pain and with our Lord. I know that I’ll carry her with me, as will the many others whose lives she touched during her time on earth. I’m grateful for all of that, truly. 

Letter to Jenn

My dear friend, 

It’s been a week since you passed. I’m still trying to wrap my mind around you not being here. My heart aches and tears continue to stream down my face as waves of sorrow and overwhelm wash over me. I’ve been thinking a lot about you, and about our interactions. 

I remember the first time I met you. We were at the final American Headache and Migraine Association conference in November 2017. We sat next to each other all morning, but neither of us spoke to one another because we were both managing a migraine attack and medication side effects. As we broke for lunch at the end of the conference, we started talking (my mind doesn’t remember clearly if we just started talking or if Dr. Starling introduced us). Either way, we learned each other’s names and chatted a little. Then, we connected through social media, and grew our friendship. I’m so grateful that we didn’t allow the opportunity to meet pass us by. 

You were the first local friend I made, after Jeremy and I moved to Phoenix. I didn’t know how I’d make local friends, given the limitations of this disease; but God crossed our paths and we became close friends quickly. 

Over the past couple years, we were open books with one another, allowing for a depthful connection that transcended the number of days we knew each other… 956 days. I cherish the conversations we shared about faith, advocacy, and the challenges and successes of living with chronic illness. 

You loved fiercely. I think that’s something we have in common. Your love for your family was unquestionable and second only to your love for God. I always enjoyed hearing stories and seeing pictures of your daughter. She is so precious, and I’m grateful that I was able to meet her in-person this March. 

Among other things, I will never forget your generosity and kindness. You always did your best to support and encourage me, despite the challenges you faced. Thank you for that. 

You made a difference in so many people's lives. Amongst the darkness of losing you, your light continues to shine. It's there in the lives you touched. It's undoubtedly you, and it's beautiful. 

It’s been two weeks since you passed. How can that be? My experience of time is warped. I want to tell you that it was such an honor being friends with you. Thank you for always encouraging me to simply be myself and reminding me to speak from my heart. What a beautiful gift. 

Goodbye, for now, my friend. 

Tributes
I was asked to share an overview of Jenn's headache disorders advocacy:

Jenn Tingwald was a fierce advocate for the headache disorders community. She participated in Headache on the Hill multiple years, spoke at two Phoenix Miles for Migraine events, and was featured in a PBS Newshour special that aired in February. Jenn openly shared about her and her daughter’s experiences living with headache disorders, and highlighted the importance of finding your voice and reclaiming your purpose through advocacy.

Jenn’s husband, Aaron, generously provided an opportunity to share a short video with a story about Jenn. I have many, but the one that was on my heart perfectly displays the kind, generous spirit of my dear friend: 

Jenn and I met at a migraine advocacy event in fall 2017 and quickly became friends and fellow headache disorders advocates. Last year (2019), Jenn and I were going to room together for Headache on the Hill. A couple days before the training, she canceled her trip. She desperately wanted to go, but she needed to focus on her health. When a horrible migraine attack knocked me down after my travel day, she tried to coordinate getting heat pads and Epsom salt delivered to me. Despite the challenges she faced, she messaged me throughout my travels and the Headache on the Hill event. She told me she’d be with me in spirit, and I could feel her presence every step of the way. 

Jenn was one of the strongest, most kind-hearted people I’ve ever known. She was a fierce advocate, especially for her daughter. And, she was a faithful prayer warrior. She always encouraged me to be myself and speak from my heart, especially when she knew I was anxious. I know she’ll continue to be with me in spirit, and I’ll hear her voice reminding me, “You’re going to do amazing!” 

For anyone interested: 

• Jennifer Tingwald Memorial Celebration Video: https://youtu.be/sapHU5bTyHQ 
• Celebrating the Life of Jenn Tingwald Facebook Group: https://www.facebook.com/groups/2734079326696053
• Go Fund Me Page (the page beautifully expresses what an amazing person Jenn was, touching the lives of so many): https://www.gofundme.com/f/jennifer-cohn-tingwald-memorial
• National Headache Foundation (Jenn’s story): https://headaches.org/2018/06/29/jennifer-tingwald/
• PBS Newshour (featuring Jenn): https://www.pbs.org/newshour/show/15-percent-of-americans-have-migraine-disease-why-arent-there-better-treatment-options 

“The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.” - Elizabeth Kubler-Ross and David Kessler

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)

Migraine World Summit 2020 Replay

The Migraine World Summit is a virtual event that broadcasts interviews from over 30 leading experts, including doctors and specialists, to share about treatments, research, and strategies to help you manage and improve your headache disorder. 

The 2020 event took place in March. Due to the significant challenges we’re facing in the midst of the Covid-19 pandemic, the event is being offered again from June 10-19. 

The event is FREE: the interviews will be open according to the event schedule (4 per day, plus 1 webinar), changing each day at 6pm ET. You can access the interviews directly on the website free for 24 hours. If you’d like to have lifetime access to the interviews, you can purchase the Summit All-Access Pass (affiliate link).

Register for free: Migraine World Summit 2020 Replay

Tune in June 9 at 5pm ET for a Live Pre-Summit Q&A with Hosts, Carl Cincinnato and Paula Dumas. They’ll explain why the Summit is being replayed, what’s new about the June Replay, and answer other questions. It’s free to join, but you must register beforehand. Click the link to register (no sign up required) for the Live Pre-Summit Q&A.

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 

An Update & More Migrainous Musings

I have been struggling with a rough stretch of status migrainosus. I sometimes get flashes of clarity or expression, when I'm in the midst of deep distress... sometimes I'm able to capture the words, scribbling them down wherever I can. Last year, I shared some Migrainous Musings. I'm here, again, yet there's little comfort in the familiarity of this place. The timelessness and dominance of pain described in Pain has an Element of Blank continues to resonate and ring true to my own experience.

I continue to share, and hope you'll excuse the raw, unedited migrainous musings / ramblings of a brain in pain.

There's an emptiness inside me that knows no bounds.
Sometimes it tries to swallow me up.
Is it the pain? The anxiety? The depression?
Or is this emptiness me?

To know me truly,
See the darkness inside me,
Then don't turn and run.

The darkness surrounds.
Is it here to stay this time?
Please don't consume me.

I do not fear the darkness in others. I generally don't fear it in myself. But, there are times that it becomes overwhelming, and I can't see the light.

I feel like I'm disappearing. Shattering into tiny pieces and blowing away in the wind. Like I'm a fragile shell, being crushed by the weight of darkness. Do I still exist? What is left of me, when the pain overflows?

I'm not ok. I know I've been in this place before, and somehow come out the other side. But, that doesn't compute right now. This feels like my forever. Like I'm trapped.

Update 1 (March 3):

I've spent most of the last week in the hospital getting infusions to try to break this status migraine.

Six days. Three IVs. Loads of meds. My mind and body are still in turmoil, and I don't know how long it'll take to feel like me again. I've been here before. I know that I get out. But, I don't know how. It feels too hard. I feel too weak.

Update 2 (March 4):

Today is filled with more pain than I feel I can bear. I'm not sure how I can survive it. I've treated hard. I'm trying to give myself rest. Nothing feels enough. I know I'll get through it... somehow... because I always do. Every time. Yet, even that gives me no solace in this moment.

Update 3 (March 5):

I woke today feeling more me than I have in a long time. Pain levels are lower. My mind and body are so weary and I can feel the weight of the battles fought. But right now, in this moment, I'm praising God for His provision and the respite.

"At the end of the day, we can endure much more than we think we can." - Frida Kahlo

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.