Showing posts with label change. Show all posts
Showing posts with label change. Show all posts

Saturday, December 21, 2024

A Look Back at 2023

It's the end of 2024. As I reflect on this year, I realize that I never posted about 2023. So, here it is. 
Note: I wrote this in December 2023.

I last posted about 2022 (and here's 2021). I may not always share an annual blog post. I don't want to place pressure on myself to write one. I'm allowing space for myself to do so, if it feels right. 

I closed out the year wanting 2023 to be "full of peace, calm, grace, and abundance. I want to flow through the challenges that will inevitably show up. I want to be present in moments of beauty and joy."
Photo by Priscilla Du Preez 🇨🇦 on Unsplash

My previous year's review offered a few questions to ponder. While they're good questions to ask about any chunk of time (a day, week, month, year, and so forth), the new year offers an opportunity to consider them for 2023.

What did you overcome this year?
I faced a lot of fear this year. I was strong and brave in ways that I haven't always noticed. I took chances and opened myself up in new safe spaces. 

This year, I made huge strides in changing the way I relate to myself and my emotions. 
  • I'm learning how to be more aware of and better identify and express my emotions. 
  • I'm learning more about what I need and want. 
  • I'm learning new ways to use my voice. 
  • I'm learning more about neural pathways and the relationship between my thoughts, emotions, and physical sensations. 
What brought you joy this year?
So much has brought me joy this year. I feel like I'm seeing things through clearer eyes, in some ways. Depression has loosened its grip on me, and life is brighter. 

I have a support system that has offered me safe presence, encouragement, feedback, and guidance. I love sharing space with these souls, even if it's mostly virtually. 

I have been able to spend time with people I love, in-person and virtually. I have been writing more, exploring new recipes, and taking more pictures of beauty.

What do you want next year to look like?
I want next year to be a time of growth and rest, consistency and change, depth and frivolity. I want there to be meaningful conversations, moments of joy, soulful connections. I want my days to be filled with creativity, love, and laughter. 

Questions for reflection (and sharing, if you'd like to). Feel free to adjust the timing to what feels right for you. Perhaps you want to consider these questions for a month, quarter, etc. 
  • What did you overcome this year?
  • What brought you joy this year?
  • What do you want next year to look like?
"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson

Thursday, January 4, 2024

A Year in Review (2022)

Note: I wrote this in December 2022.

I don't always do a year in review sort of post, though I did in 2021. I was recently part of a writing group that prompted me to consider some questions about this year.
eberhard 🖐 grossgasteiger on Unsplash


This year has been an intense year. There has been a lot of deep sadness and grief. Depression has taken hold multiple times. Anxiety has spun me around more times than I can count. Pain remains my daily companion.

Through it all, God has remained faithful. I'm grateful for His provision, especially when I don't know what I need.

I have overcome a lot this year. I've made it through every single time that I wasn't sure I would. Every time. Every. Time. I will continue to make it through, even when I'm not sure how.

I did a lot of hard work this year. I tackled depression with TMS (transcranial magnetic stimulation), Ketamine, and therapy. I completed a 3-week intensive pain rehabilitation program. I consistently showed up for physical therapy, both in office and at home. I made it through pelvic trigger point injections and acupuncture. A lot of needles. A lot of pain. A lot of work.

I am a warrior. I’m tired of fighting, and I'm doing my best to find balance.

I still have a long way to go to get to where I want to be. Where I thought I would already be. I'm doing my best to accept where I am and continue working to get to where I want to be.

I spent time with family and friends this year, both virtually and in-person. I enjoyed moments of love and laughter.

I want next year to be full of peace, calm, grace, and abundance. I want to flow through the challenges that will inevitably show up. I want to be present in moments of beauty and joy.

Intentionally reflecting allows me to recognize how far I've come.
  • Writing about the obstacles that I overcame reminds me of my strength and resilience, and God's faithful provision.
  • Remembering the people and moments that brought me joy reminds me of all that I'm so very grateful for.
  • Looking forward to the coming year reminds me that there's space to grow and change, and that there's always hope.
Questions for reflection (and sharing, if you'd like to):
  • What did you overcome this year?
  • What brought you joy this year?
  • What do you want next year to look like?
"Year's end is neither an end nor a beginning but a going on, with all the wisdom that experience can instill in us." - Hal Borland

Saturday, October 21, 2023

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.

Sunday, January 2, 2022

A Year in Review, Kinda (2021)

I like things to be in order. I always have. Sometimes, it gets me locked into place and prevents me from starting or reaching out or sharing at all. It's more than ok to start from where you are... from where I am. That's where we are: now, this moment.

This year has included many health-related challenges, including a hospitalization, multiple infections,
major surgery, new symptoms, testing, imaging, new diagnoses. Oh my!

Photo by v2osk on Unsplash
I've faced a lot, made it through a lot, and learned a lot. 

I'm still going through a lot, processing through a lot, and focusing on healing a lot. 

A lot.

It's been nonstop.

Generally, my primary way of processing is through writing. It's how I move through life's ups and downs... especially the latter.

This year, though, my writing has been more focused on documenting what's going on, defining a bunch of new to me terms, and doing my best to wrap my mind around it all. The processing part has been tricky, as I've often been merely trying to get through one moment to the next. 

I want to write.
I want to process. 
I want to share.
I need to survive.

There are times that the physical side of recovery consumes all of my energy. That's compounded by trying to strike a balance of allowing the emotional aspects to ebb and flow, and not getting completely swept away by the waves of emotion. Physical pain is rarely experienced without an emotional impact, at least for me.

So, I write thoughts down. What that looks like varies: snippets of thoughts or ideas, a list of questions, prayers, words or songs that resonate with me, unedited raw emotion, a moment when dots suddenly connect... even a complete blog post.

Then, weeks and months (and, sometimes, years) pass by before I finish or share / post what I started writing in the midst of it all.

I know that it's ok. And, it can feel overwhelming.

I have to start somewhere. Somewhere is here. Now.

I'm struggling. On multiple fronts. 

There are times that it feels like there's no time, space, or energy to slow down to process something before another thing drops. 

I recognize that I'm in a season of needing to focus on my health and hurts. I know that it's important. Crucial, even. I know that it's what I need to do. And, it's really hard. 

I'm not comfortable with needing to focus on my stuff so intently, for so long. It's exhausting. 

I'm well-versed in managing and seeking support for the chronic illnesses I've had for years. Asking for and accepting help have been things I've gotten much better at over the years (Help: A Four-Letter Word). The trouble is, there's been so much new health stuff this year, and I don't yet know what help or support I need to ask for. 

It's frustrating to so frequently have something new, worse, and/or more going on with my health. I feel like I don't have much left to give to others... and, that... that is so hard.
I acknowledge that feeling it doesn't make it true. It's a self-judgment / critique. I truly believe that a poll of my people would show that I'm giving others love, support, care in multiple ways and that I am and have always been enough.
I'm also able to recognize that I've grown in how I handle and face uncertainty, change, loss, complexity. I'm still learning and growing, for sure. 

I don't know how things will look here on my blog moving forward. I plan to continue to use this space as a place to process and share. I think that might look like a combination of words I wrote in the moment and where I'm at in the process now. 

I'm looking forward to writing and sharing more of my journey. 

"No matter how big or small, allow yourself the chance to reflect on all of the things you've championed in the past year. You are allowed to feel proud of yourself." - Olimatta Taal

Friday, October 22, 2021

13 Years Later, Now

I recently posted Reflecting 12 Years Post Accident, which I wrote in 2020. Please feel free to click over and give it a read. While I don't post about it every year, I felt the need to, again, this year (2021).

Mixed emotions. That's how I feel, as the 13th anniversary of my car accident approaches. Each year hits a bit differently. It doesn't always affect me. I took the power of that date back several years ago. I know that the date isn't inherently bad... yet, I feel the weight of it a bit more this year.

Photo by Tengyart on Unsplash

This year, it makes sense why it's on my mind more.

On September 30, I woke with what I labeled a "sleeping injury." I had pain and limited range of motion in my right shoulder and neck. I joked about how ridiculous our bodies are, that I could hurt myself while in an unconscious state.

I figured it was simply a matter of sleeping weirdly and that it would dissipate in a few days.

It didn't.

The tightness, pain, limited range of motion worsened each day. I've tried: heat, ice, muscle relaxers, nsaids, theracane, lidocaine patch, gentle massaging and stretching.

My sleep and daily functioning are both being disrupted and limited. I want to write, but I'm having a difficult time physically doing so.

There's an emotional component to this pain, as well, as it's reminiscent of past trauma / pain.

I know that our minds are prone to distort or misremember things, including pain experiences. This is often compounded by time. Understanding all of that, there's still a familiarity with the pain and limited range of motion I've been experiencing.

I injured my neck and right shoulder in a 2008 car accident. While I don't fully remember a chunk of time after the accident, I remember pieces. One of those pieces is that there was a lot of pain and I was physically very limited in using my right arm and neck.

Two years after the car accident, I had a neurostimulator implanted (2010). I had a very long and difficult recovery, including severely limited range of motion in my neck.

I've been doing a good job recognizing the connection to these past traumas / events that my mind and body are making, and reminding myself that they are separate. The car accident isn't happening right now. I am safe. 

In light of current struggles, I'm being reminded:
  • Healing isn't linear - past grief, trauma, loss, challenges keep showing up. Each time they do, I do my best to feel it and process through.
  • I'm safe - it can be especially difficult to remember this, when there's such similarity in how I feel (physically and/or emotionally). 
  • I'll get through this, as I have previous challenges.
Update: I was seen by primary care on 10/5. I woke on the 13th anniversary day (10/10) with the first notable improvement in symptoms since they started. I'm so grateful for that. I have imaging and doctor appointments on the schedule to help determine the path forward.

Monday, January 18, 2021

In Loving Memory of Jordan Conkle

*Sensitive Topic / Trigger Warning: death, suicide

My cousin, Jordan Conkle, died from depression by suicide on November 3rd. 

Loss and grief are part of the human experience, happening in a multitude of different ways throughout our lives. It's never easy. Processing tragic, devastating losses is really hard. I want to share some things that I’ve written, as I've tried to wrap my mind around this loss. It may be a bit bumpy, but grieving is rarely smooth sailing. 

In the Moment
Today started like any other. When I checked my phone, however, I had a missed call and voicemail, overnight. I listened to it and reached out via message to find out more. It was about Jordan, but that's all I knew. I didn't feel up to a phone call, but my anxiety nagged at me, so I texted my sister in law to see if she knew what was going on and if Jordan was alright. She immediately called me. Ok, so it's something that takes explanation. My mind didn't immediately jump to the worst (which is actually an improvement for me). 

Then, she said the words. The words that made everything spin and stop at the same time. 

Jordan ended his life last night.
What?
She repeated it.
I started to collapse down and lose it. Jeremy caught me and helped me safely down to the ground. 
I think I whispered, "Jordan's gone," in disbelief.

There is no good way to find this type of thing out. That said, I'm grateful for the family member that reached out during the night and for my sister in law. She was direct with telling me what happened, and was a soft and safe place for me to experience the initial shock and wave of emotions. I'll always be thankful for her love and care in such a heartbreaking moment.

Thoughts Day-of
Today, I found out that my cousin ended his life last night. I don't know how to wrap my mind around this.

Losing someone is hard. The circumstances around the loss, I find, can magnify different parts of the grieving process. You still must travel through the stages, in whatever order they present and re-present, but some come up more or are more pronounced.

This year, I've lost two people, both completely unexpectedly. I knew losing people would happen. It's part of being human. I wasn't prepared for the losses to strike so soon to people in their 30s, like I am. It's so hard to process, on multiple levels.

I don't want to sit in it, but I've been in the depths of depression. I know how bad that place is, and I'm so grateful that I've gotten out. I know others that have been in that place, too. We live with deep depression. There's a knowing that only people that have experienced that type of depth can have, even though everyone's experience is unique. I try to support those I can, in the ways that I can. They ultimately have to get out of the pit, but I can sit with them and shine a light for them when they're surrounded by darkness. 

I woke today, wishing it had only been a bad dream. It isn't, and that is crushing.

Memorial Service
The memorial service for Jordan was held in-person in Texas, followed by a graveside service. They streamed the memorial service on the church's social media. My sister and I were able to FaceTime and watch together. 

I attended a virtual memorial service earlier this year, but this one felt different. We weren't in Zoom rooms watching the service together. It felt like everyone was gathered together, and we were watching from afar. There was a disconnect. 

During the service, I learned that Jordan's favorite worship song was Here I Am to Worship. Jordan was someone who lived and loved big, and he's deeply missed by many.

I'm grateful for conversations with loved ones, both those also grieving the loss and those supporting me in my grief. I'm grateful for my cousins, who reached out and connected. I'm grateful that my sister and I were able to watch the service and be with one another in the ways we were able. I know that there will be waves of processing and grieving, much of which is done alone. I'm so grateful to have people that love and care surrounding me, who will support me however they can.

The Following Months
The holidays were filled with a lot of different emotions, for a lot of different reasons. In light of a loss in the family, my mind fluttered through memories, specifically those of growing up so close with my cousins. 

On Thanksgiving evening, I began to miss more... our big family Thanksgiving get togethers. Kristin and Jordan would get there later in the day and we'd play games. 

As Christmas approached, I felt the missing grow. Missing out being with family and friends, especially in light of a pandemic and unexpected family loss. I had dream(s) that included PaPa and Jordan, two family losses in as many years. I knew in the dreams that they're no longer with us, but they were special all the same. The one that Jordan was in: I think we were gathered as a family trying to watch his funeral service or something. Jordan came to me. He was younger. And we hugged, the way he did. 

I continue to give myself space to process. I wrote, "Jordan, it's Christmas Eve. We used to spend every one of them together (as we grew older, it was the weekend before Christmas). We would be eating, laughing, opening gifts, sneaking off to play with our gifts as the adults talk."

It's interesting the things we remember. I have tons of memories with Jordan, but many of them are simple moments. The silly grin on his face, his facial expressions, the way he hugged and laughed and smiled. 

As I've been processing, it's clear that we don't always remember the details of a memory or moment. That's ok. We can remember and hold onto how we felt in that person's company or presence. Love, laughter, comfort, calm, joy. All of these are so precious. 

Letter to Jordan
Jordan,
How can you not be here anymore? It's so hard to make sense of this world not having you in it. I know that we haven't kept in touch. But, you always have a place in my heart. I cherish the memories of all of us throughout the years. Watching Milan, playing games, playing pool, dressing you up, going to car shows, monthly family birthday get togethers, Thanksgiving at my parents' house, Christmas at your parents' house... I'm grateful that we were able to have that time together. 

We last saw each other in November 2019 at Grandma's 80th birthday party. When you were leaving, you stopped and chatted with me, giving me all of your attention. You told me that you read my posts and you asked me to tell you more about my advocacy work. We talked about Headache on the Hill and me speaking at RetreatMigraine and Miles for Migraine events. You shared that you wished I wasn't in so much pain, but that you're so proud of who I am and the work that I do. Then, you gave me a hug. Your hugs were so healing, a safe and loving embrace. I am beyond grateful for those moments and that memory with you. I felt seen. Beyond the childhood and familial connection, but rather one adult to another. That connection we had, I will always remember and cherish.

Jordan, I'm so sorry that you were in a place of such despair that you didn't see a way out. I won't get wrapped up in how I imagine you feeling or even what mental health challenges you might've been facing, as it's all conjecture, and truthfully doesn't matter... it won't bring you back.
I love you so much, cousin. 

Final Thoughts, For Now
I am working so hard to process the grief. To acknowledge and express the things I wish were different, without carrying the weight of regret. I will continue to process through the hurt places and grieving potential future outcomes. Learning lessons along the way that I can use to help shape how I move forward. Processing through the grief until what remains is love, cherished memories, and lessons to move forward.

Links:
About Suicide
Resources

"No one ever told me that grief felt so like fear" - C.S. Lewis, A Grief Observed

Friday, July 17, 2020

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: 
“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

Saturday, February 15, 2020

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)30322-3https://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/10.1177/0333102410381145https://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/10.1177/0333102414539055https://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.12233https://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/s10194-016-0696-8https://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
(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.

Saturday, September 14, 2019

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:


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.

Friday, September 13, 2019

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

Monday, December 31, 2018

Farewell, 2018!

Photo by Ian Schneider on Unsplash
Today is the final day of 2018.

The past week has been rough, pain-wise. But, I've done my best to review and reflect on this past year beyond the lens of my current pain... it's good to remember that things aren't always so hard.

This year has been a year of ups and downs, as life is. I've laughed and been filled with joy. I've been scared and overwhelmed with anxiety. I've found courage deep within and faced fears. I've practiced being present in the moment. I've made some wonderful memories and connections. I've lived, not just survived.

The coming year will be another chapter in my journey. While I don't make new year's resolutions, I have found that having a word to focus on in the coming year has been powerful.

Personally, I spend time praying about what God wants to grow me in and show me during the coming year. I have felt Him place a word or phrase on my heart each year that I've done it. It has been a practice of beauty, discipline, and grace.

The chosen word or phrase becomes a lens through which I examine my heart and life, both as I move through the year and upon reflection.

Whether or not you make resolutions or choose a word, I hope that you take some time to think about and reflect on what the year has held. Celebrate the wins and reflect on the losses.

As we transition into the new year, my hope is that each of us lives our most authentic and best life.

Practice gratitude. Laugh as much as possible. Find beauty everywhere. Be bold. Stay true to your beliefs. Treat yourself and others with kindness. Live with intention, love, and joy.

"It is my intention to live an authentic life of compassion and integrity and action." - Zachary Quinto

Wednesday, December 26, 2018

Establishing Care With a New Provider: Step by Step

You've made the decision to seek out a new healthcare provider... what's next?

This is the third post for establishing care with a new provider: My Journey and The First Step.

Photo by rawpixel on Unsplash
Below are some guidelines to help you through the process. I've divided them into before, during, and after the appointment.

Before 
  • Find a healthcare provider. Follow this link to Find a Headache Specialist
  • Check insurance coverage and restrictions. Contact or search to ensure your new healthcare provider will be covered by your insurance. If your new provider is a specialist, check with insurance to find out if a referral is required. 
  • Schedule your appointment. Either have you current provider submit a referral or contact the new provider to schedule an appointment. Specialists are often difficult to get in to see. Be prepared for a long wait to get on the schedule. 
  • Request and complete paperwork ahead of time. Some providers will automatically send you the paperwork ahead of time. If they don't, simply request it. 
  • Request to transfer your medical records and test results. Contact your current and/or previous provider(s) to make this request. You'll need to submit a record release form. The transfer of records can take several weeks, so make the request early. 
  • Consider bringing someone with you to your visit. Make sure this is someone that you're comfortable having in the room with you. Have him/her take notes of what the doctor says, so that you can focus on the appointment. 
  • Make a list of questions and concerns. Prioritize the list, as you may not be able to get to all of them.
  • Prepare a list of current medications (including prescription, over the counter, vitamins, and supplements). Providing a list of previous medications can be useful, as well. 
During
  • Share your short introduction. This doesn’t have to be done in a formal way, but it can often provide a good start at the appointment. 
  • Answer questions honestly. This is not a time to wear a mask. Try not to over- or under- state the intensity or severity of your symptoms, as an accurate assessment is important. Be prepared to be specific in describing symptoms and how they affect you. 
  • Address your list of questions and concerns. It may not be possible to address the entire list during the appointment. 
  • Clarify if there is anything the healthcare provider would like you to track. Each provider has different preferences about what they want tracked, for how long, and in what format. 
  • Discuss goals of treatment. Sometimes the goals and expectations that we have for our treatment plan vary from our doctor's. 
  • Discuss expectations for communication between visits and for emergencies. 
  • Ensure that you know / understand what your next steps are (testing, treatments, etc), and when you should plan your next appointment. 
After
  • Complete any follow-up tasks your provider requested (if applicable). 
  • Follow the treatment plan you and your provider have agreed upon. 
  • Request office notes for your personal records. Some doctors utilize an online portal for records and communication. 
Rest assured that the initial appointment with your doctor is just the beginning. You don't have to get everything in during that first interaction. This is the start of a partnership and another part of your journey.

"Coming together is the beginning, keeping together is progress, working together is success." - Henry Ford

Establishing Care With a New Provider:

Monday, December 17, 2018

Establishing Care With a New Provider: The First Step

You might be seeking to establish care with a new healthcare provider under any number of circumstances, but knowing how to proceed can be daunting.

First, congratulations on taking charge of your health. Finding a provider that is a partner in your care is a powerful thing, and is definitely worth the time and effort involved.

Second, take a deep breath.
Photo by sydney Rae on Unsplash

It may feel like you have an insurmountable climb ahead of you, but just take it one step at a time. 

I previously shared My Journey. Here are a few things that helped me move forward in establishing care with a new provider. 

Many of us have a lot of data on our chronic illness, including medical history and pain trackers. Understand that there's simply no way that a doctor has time to go through all of that for each patient... and that's okay. 

A lot of what I was so overwhelmed and anxious about was feeling that I wasn't going to be able to provide all the answers or information the doctor would need to partner in my care. 

Having a brief introduction prepared is a good place to start. Being able to concisely share a description or outline of your journey is a great skill to have. Consider how you would share your health story in just a few sentences. Some questions to guide you:
  • When did you start experiencing headache? 
  • When were you officially diagnosed? 
  • What was your diagnosis? 
  • What categories of treatments have you tried (e.g., medications, devices, alternative therapies)? 
You know your body and your experience better than anyone. The combination of your new patient paperwork and your short introduction should result in a conversation between you and the provider. They will ask for more details when they need to, and you'll be able to answer because it's your experience. 

Establishing care with a new healthcare provider can be difficult and stressful, but it can also be hopeful. This is an opportunity for a fresh start. A new partnership. A different set of knowledge, skills, and experiences.

"The journey of a thousand miles begins with a single step." - Lao Tzu

When I was writing about this topic, I found myself addressing it from two different angles: personal experience and as a step by step process. It’s not unusual for me to struggle with which way I want to share, as well as with indecision. I’ve chosen to post both, as I believe them to both be useful in seeking and establishing care with a new provider. Stay tuned for the Step by Step guidelines.

Establishing Care With a New Provider:

Monday, December 10, 2018

Establishing Care With a New Provider: My Journey

A friend of mine recently moved to a different state and is facing the daunting task of finding and establishing care with a new healthcare provider. When she shared this with me, I remembered all of the feelings and emotions that had flooded me, when I faced the same thing. Sharing my journey to help others is a big reason why I started this blog, so it only seemed right to sit down and write.

This will be a multi-part post. I'll share my story, and then I'll lay out some guidelines to use in your own journey (First Step and Step by Step).

Establishing care with a new healthcare provider?
Photo by rawpixel on Unsplash

I’ve been there. It can be a time of mixed emotions. Anxious. Overwhelmed. Scared. Exciting. Hopeful. 

I’d known for a long time that my doctor was out of treatment options for me to try. He did his best to help me maintain, but he had nothing new in his toolkit to offer. Despite him outright telling me multiple times over several years that this was the case, I wasn’t able to hear and accept what he was telling me. 

Honestly, I was afraid. I’d been with this doctor for 7.5 years. He was the first headache specialist I was referred to in the year following my car accident (The Battle Begins). He had helped me through so much, and I was comfortable with him.
  • I was afraid of starting with someone new. 
  • I was afraid that I’d have to retry failed treatment options. 
  • I was afraid I’d have to prove and defend my pain and disability levels. 
  • I was afraid of the monumental task that starting with a new doctor while having such a complex medical history felt like.
I had spoken with a couple doctors at patient conferences about what was important for establishing a new relationship with a healthcare provider. This helped ease my mind a little bit about what I needed to do to prepare, but it still took me a year or two to get to a place where I was prepared to take that step. 

My doctor was very supportive and kind about me moving on to a different headache specialist. He sent the referral and continued my care until I could get in with the new doctor. 

I prepared a lot at home for that new doctor, but much of it was to make sure my mind was in order... for me, having order can help ease my anxiety, even if only a little bit. 

My first appointment with my new headache specialist was incredibly smooth. I had submitted all of the new patient paperwork prior to the appointment. I never felt like I had to defend myself in any way. He didn’t question how much the pain has disrupted my life... he trusted my word. That was hugely uplifting and powerful. Since each doctor has different preferences about what they want tracked, I clarified that with him on our first visit. We also discussed expectations for communication between visits and for emergencies. 

I left that visit “grateful for renewed hope with a new specialist. Looking forward to this chapter, as it already promises opportunities to make positive changes in my life. The road won’t always be pleasant… sometimes it’ll be downright miserable… but, I have a good support team that knows I can do it, even when I’m uncertain.” 

I only saw this doctor a few times before I moved a couple states away. I struggled with separating from a doctor that was a true treatment partner. We had barely scratched the surface, and the fear that I may not find another doctor that I trusted and would be a partner in my care lay heavy on me. 

Time to start over... but on a much larger scale, as I would need a new dentist, eye doctor, and primary care doctor, in addition to a headache specialist. It felt like a heavy task, but it was no longer monumental. There was a sense of hope that getting new perspectives of my health might reveal new possibilities in treatment and quality of life. 

I chose to find a headache specialist first. My previous doctor referred me to my current doctor and continued care until I could be seen. 

My first appointment with my current headache specialist was a lot like the previous one. I submitted all of the new patient paperwork prior to the appointment. The appointment was smooth, which I attribute partially to me continuing to hone in on my experience. We, too, discussed expectations and ensured we were on the same page as one another. 

That appointment initiated a series of consults and testing to address other health concerns and comorbid diseases. I saw around 8 new doctors (in addition to testing) in the following 5 months. Each doctor needed my story, but from a different vantage point... from the vantage point of his/her specialty area. It was exhausting, but I learned so much. 

I realize that not everyone has access to a headache specialist and that not everyone will have a smooth, positive experience. There are not even close to enough headache specialists available (there are less than 500 in the United States), and most doctors don't receive much education about headache medicine. All we can do is be prepared to do our best to find a healthcare provider (even if it's not a headache specialist) that is willing to partner with us in our care. 

"The fears we don't face become our limits." - Robin Sharma

Establishing Care With a New Provider:
Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.