Showing posts with label hope. Show all posts
Showing posts with label hope. 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, September 10, 2023

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
Resources
Helplines
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.

Wednesday, August 10, 2022

Pain Wraps Us Tightly Into Ourselves

Pain wraps us tightly into ourselves.
Photo by Erik Kroon on Unsplash


I wrote these words a couple years ago. They have proven to be so true. I have seen and felt it in me. I have seen and felt it in others.

Physical pain. Mental pain. Emotional pain. Spiritual pain. Relational pain. All pain. 

When pain is acute and deep, focus tends to draw inward. Toward the hurt, pain, chaos within. 

It sometimes feels like there's no way out of the protective walls that shoot up when the brain thinks we are in danger. The truth is that those walls often close off the very people that are willing to help. 

"I started to build a home with all the walls I was putting up for myself, but when I was finished, I realized I had built a cage and didn’t make a key." - Lidia Longorio

I have worked for years to recognize and intentionally act in ways that counter the closing off that feels natural when pain hits hard. 

One way I do this is to reach out, when I feel myself closing off and turning inward. I do this through prayer and connecting with a friend. It doesn't always make an immediate notable difference for me, but I can usually notice that it positively impacts the person I reach out to... and it ultimately impacts me, too, even if it's delayed. 

My goal in reaching out is to connect. This sometimes involves sharing about my current struggles, but not always. Oftentimes, it's simply to let them know that I'm thinking of them. This is likely related to me feeling alone in that moment and wanting others to know that they're not. I find that true connection helps both individuals feel less alone. 

"Knowing that you're not alone really does make all the difference in the world." - Normani Hamilton

Sunday, October 10, 2021

Reflecting 12 Years Post Accident (2020)

I wrote this post last fall (October 2020), as the anniversary of the car accident approached. 

Over the years, the meaning and emotion of the event have ebbed and flowed in a way that perfectly illustrates the grief process. I've written about this multiple times before: 
When I moved to Arizona in 2017, I started seeing a headache specialist here. It so happened that the date of that initial appointment was the same as the accident. I consciously chose to take back that date; the move and new provider representing a clean slate of sorts. 

This year has been filled with so much loss, on both the individual and collective levels. Perhaps it's in light of this that I find myself more aware, as the anniversary of the accident approaches.

As 12 years post accident approaches, I find myself reflective. 
Photo by Faramarz Hashemi on Unsplash

Following my accident, I fought hard to get back the pre-accident Jamie. I finally reached a level of acceptance in living with this disease, and fought hard for the Jamie I am today. I'm still a work in progress, no doubt. But, in this moment, I recognize that I've come a long way.

I have to be very mindful about how I think about this. It can be all too easy to spin down a path of what ifs. The truth is, the person I was when the accident happened is frozen in time. She very well might've had a different journey, but the person I missed for so long (and sometimes still do) would be whoever she grew to be over the years. And, that, is unknowable. It will forever be an unknown. So, I must remind my mind that the grass may not have been greener. 

I'm grateful to have some people close to me that know me and love me as I am, not who they wish I was. I want to see me through their eyes, to believe in myself the way they believe in me...  with less self-critical judgment. I'm working on it.

Today, I recognize that living with chronic pain is hard, that each year that passes may affect me differently, that grief is a process with ebbs and flows... and... that I can do more than I think I can, that I can engage with myself with compassion and love, that I can give myself space to experience the grief process in all the ways it shows up. 

(As I'm posting this a year after writing it, I'll share about this year's anniversary in a separate post) 

"Loving ourselves through the process of owning our story is the bravest thing we'll ever do." - Brene Brown

Monday, February 17, 2020

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

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

Thursday, January 31, 2019

Head Above Water

Music has always played an important part of my life journey. There are songs that touch my soul in unexpected ways by expressing a deep pain or angst, faith or hope... or a combination of the complexity we experience as humans.

Avril Lavigne's song, Head Above Water, captured me from the first time I heard it last fall. Apparently, the song stuck with me, and surfaced over the struggles of the last month because I've found myself singing the chorus at random moments.

She wrote this song during her own debilitating health struggles. The rawness and openness of her physical and emotional battles in the midst of a terrible storm is so powerful. It's a reminder that despite the storms and battles that we face in life, we can reach others, grow, and create something amazing.


Head Above Water by Avril Lavigne

I've gotta keep the calm before the storm
I don't want less, I don't want more
Must bar the windows and the doors
To keep me safe, to keep me warm

Yeah, my life is what I'm fighting for
Can't part the sea, can't reach the shore
And my voice becomes the driving force
I won't let this pull me overboard

[Chorus]
God, keep my head above water
Don't let me drown, it gets harder
I'll meet you there at the altar
As I fall down to my knees
Don't let me drown, drown, drown
Don't let me, don't let me, don't let me drown

So pull me up from down below
'Cause I'm underneath the undertow
Come dry me off and hold me close
I need you now, I need you most

[Chorus]
Don't let me drown, drown, drown
Keep my head above water, above water

And I can't see in the stormy weather
I can't seem to keep it all together
And I, I can't swim the ocean like this forever
And I can't breathe

God, keep my head above water
I lose my breath at the bottom
Come rescue me, I'll be waiting
I'm too young to fall asleep

[Chorus]

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:

Monday, November 26, 2018

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

Friday, September 28, 2018

Two More CGRP-Drugs Approved by FDA

May 17, 2018 was a Momentous Day for Migraine: First CGRP-Drug Approved by FDA. It was the first FDA approval in a new class of preventive medications developed specifically for migraine.

The month of September has seen the FDA approve two more CGRP-related medications.

On September 14, Teva announced the FDA approval of Ajovy (fremanezumab-vfrm), "a humanized monoclonal antibody that binds to calcitonin gene-related peptide (CGRP) ligand and blocks its binding to the receptor" (https://www.businesswire.com/news/home/20180914005613/en/). It's available in monthly or quarterly doses, via self-administered, subcutaneous injection(s) from pre-filled syringe(s). The list price is $575 per monthly dose and $1,725 per quarterly dose.

On September 27, Eli Lilly and Company announced the FDA approval of Emgality (galcanezumab-gnlm). It will be available as a once monthly, self-administered, subcutaneous injection. The first month will be two injections, followed by a single monthly injection.(https://www.multivu.com/players/English/8386051-lilly-emgality-fda-approval-migraine-treatment/)

The CGRP class of medications work to stop CGRP protein from binding to the receptor. Aimovig, is a monoclonal antibody against the CGRP receptor. Both Ajovy and Emgality are monoclonal antibodies against the CGRP protein. There is one more medication that targets the protein that has not yet been approved by the FDA.

Further reading:

Each of the companies that have come to market with CGRP medications for migraine prevention are offering patient support programs, specifically for those with commercial insurance.

Here are the links for the different medications that have been FDA approved:

Thursday, May 17, 2018

Momentous Day for Migraine: First CGRP-Drug Approved by FDA

Huge news! Today, the first-ever preventive developed specifically for migraine was approved by the FDA.
"The drug, Aimovig [erenumab-aooe], made by Amgen and Novartis, is a monthly injection with a device similar to an insulin pen. The list price will be $6,900 a year, and Amgen said the drug will be available to patients within a week." (https://www.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html)
This new class of medications targets the calcitonin gene-related peptide (CGRP), which is believed to play a critical role in migraine. There are three other drugs in this class that are aimed at FDA approval in the coming months. During clinical trials, all of these meds have done remarkably well: more effective than the meds currently used for migraine prevention, and with fewer side effects. This could be life-changing!

Further reading:

Monday, June 29, 2015

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.
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.