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

A Letter to Myself

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

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

This year feels different. 

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

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

My dear self,

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

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

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

Breathe. 

Rest. 

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

Be gentle with yourself. 

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

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

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

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

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

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

Do these to help you feel like you again. 

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

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

Keep going, you’ve got this.

Love, Me

Photo by Jamie Valendy

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

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

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

I've got this!

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

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

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

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

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:

• Obituary: Jordan Lee Conkle Obituary - Visitation & Funeral Information (lucasfuneralhomes.com)
• Memorial Service Video: https://fb.watch/34RAxG6ieW/

About Suicide

• Globally, there is one suicide about every 40 seconds. (WHO, Suicide Prevention Fact Sheet)
• In the U.S., there is a suicide every 13.7 minutes. (Suicidology, Fact Sheet)
• Suicide is the 10th leading cause of death for Americans. (CDC, Fact Sheet" (Suicide – TWLOHA))
• Suicide is the 2nd leading cause of death for Americans ages 10-34. (CDC, Fact Sheet" (Suicide – TWLOHA))
• Males die by suicide four times as often as females, but there are three female attempts for every male attempt. (Suicidology, Fact Sheet)

Resources

• American Foundation for Suicide Prevention (AFSP)
• World Health Organization (mental health and suicide data)
• American Association of Suicidology 
• 22KILL
• To Write Love on Her Arms
• Helplines: 
• National Suicide Prevention Hotline (24/7/365): 1-800-273-TALK (8255) 
• Crisis Text Line (24/7): text TALK to 741741 to connect to a crisis counselor
• NAMI (National Alliance on Mental Illness) Helpline (M-F 10am-6pm ET): 800-950-NAMI (6264) or info@nami.org
• Veterans Crisis Line (24/7): 1-800-273-8255 (press 1), text 838255, chat online
• Additional 24-hour helplines (including child abuse, domestic abuse, sexual abuse)

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

In Loving Memory of Jenn Tingwald

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

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

Words in the Moment 

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

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

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

This loss is different than others. 

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

This was different. 

This was completely unexpected. 

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

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

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

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

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

Letter to Jenn

My dear friend, 

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

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

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

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

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

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

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

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

Goodbye, for now, my friend. 

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

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

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

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

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

For anyone interested: 

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

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

An Update & More Migrainous Musings

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

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

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

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

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

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

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

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

Update 1 (March 3):

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

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

Update 2 (March 4):

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

Update 3 (March 5):

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

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

Migrainous Musings

I have been struggling with a rough stretch of status migrainosus. When I'm thinking a little more clearly, I know that it will end... but when the pain levels are unbearable and the insomnia from treatment is added to the mix, night can bring out all kinds of demons (anxiety, depression, PTSD). In Pain has an Element of Blank, I wrote about the timelessness and dominance of pain, so this is something I've been facing and working on throughout the last 10 years.

This is part of my journey. Please excuse the raw, unfinished, unedited migrainous night musings / ramblings of a brain in pain; but I thought they might be worth sharing.

All alone, in the dark, is where the true torture happens. The incessant pain is magnified by the lies that it tells. When will it end feels like a question not worth asking. The pain decides without your consent.

Mind racing. Heart thumping, Head pounding, Body screaming.

The light of hope seems so soft and dim, but it's what holds us together when the night seems to never end.

Day in and day out, the pain becomes an unwelcome but constant companion. Sometimes it's there lurking in the shadows, sometimes it walks right along side of us, and sometimes it completely overtakes us.

Regardless of how wonderful a support network we have, there are moments that simply have to be faced alone. In the dead of night, when everyone is sleeping, the pain, anxiety, and isolation make their move.

Photo by Travis Bozeman on Unsplash

I've written several Haikus (and Tankas) previously in my journey, here and here. Sometimes it helps to try to focus my mind on thinking or writing in a specific way.

Darkness breeds darkness.
Incessant pain tells us lies.

We must seek the light.

We may feel alone,

But we never truly are.

Reach out and have faith.

Stark desert. Dark night.

Looking for a small reprieve

From the pain and fight.

“Be patient and tough; someday this pain will be useful to you.” - Ovid

Step of Faith

As I return to my blog, I've taken some time to read some previous posts that I've written. It has highlighted so much of how I've changed over the years. My journey has been filled with ups and downs, light and darkness, joy and sadness.

My very first blog post, The Battle Begins, was a step of faith that I took during a very raw time in my life. I continued to be open about my journey in subsequent blog posts, and have striven to carry that vulnerability into more of my interactions.

As I would expect happens with most writers, I have drafts of thoughts and ideas that vary from unfinished to simply never posted. Some, I may not return to, but others will be shared on the blog. I don't have the desire, energy, or recollection to recount everything I might've written about over the past couple of years, but there are some experiences and lessons that should be shared.

Photo by chuttersnap on Unsplash

Ultimately, I'm not sure where writing will lead me. I'm taking another step of faith in getting back to
my blog and sharing more of my journey.

If there are any topics that you struggle with in your own journey, feel free to reach out or comment. Sharing our stories and supporting one another along our paths is powerful.

"Faith is taking the first step, even when you don't see the whole staircase." - Martin Luther King, Jr.

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

Activities That Build Hope

Activities / Hobbies That Build Hope: What activities or hobbies do you participate in that help build hope for you?

I don't have very many hobbies anymore. It's difficult enough to deal with daily life and things that need to be done to maintain even the basic necessities. However, I do think that meaningful activities and hobbies are very important for everyone to have and cultivate. Such activities can provide distraction from pain, a sense of meaning and accomplishment, and self-discovery.

There are definitely times that I go too long without participating in activities and hobbies that I enjoy. This can be due to many reasons, including: physical limitations or inability, and lack of interest. But, I'm trying to get back into doing things that are enjoyable because it helps to create a more balanced life.

I find that the mere act of taking part in an activity or hobby gives me hope. Just a few of the activities / hobbies I enjoy are: cooking with (and, when I'm able, for) my husband, going on walks with my husband, reading, writing, traveling, scrapbooking.

Cooking allows me to escape the stress and pressure of other things going on. I can just focus on the task at hand. It's a way for us to make healthy options, create something good, try new things, and perhaps allows me to feel like I have some level of control over something.

Walking allows me to be in the moment and enjoy time with my husband and our dog. I often can't go on long walks, but even a walk around the block is enjoyable with those two.

Reading allows me to temporarily escape the reality of pain and to learn / expand my knowledge. I have difficulty reading much with my migraines. When I'm able to read even short things, though, it gives me hope that I'll be able to read (or adapt and listen) more in the future.

Writing allows me to express myself. I'm able to share my own experiences, and hopefully help others know that they're not alone. Being able to write gives me hope that I can make a difference in this world.

Traveling allows me to experience new places, people, things. My long-standing wanderlust has been fueled by a semester abroad. I just love to travel... and  then scrapbook the many, many photos I take (I suppose I should add photography as one of my enjoyable activities / hobbies).

Scrapbooking allows me to express myself creatively and cherish some of the moments I've lived. Re-living memories, as I'm scrapbooking, is so great to me. It reminds me that even though I struggle so much with migraines, I'm still living life, enjoying moments, and making memories.

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

Large Migraine Hopes

Large Migraine and Headache Hopes: What large thing gives you hope for living with Headaches and Migraines?

One of the large things that gives me hope for living with Migraine and Headache is advocacy. I get a surge of hope rush through me, as I see and read so many people's stories and advocacy efforts online.

It also gives me hope to be able to be one of the voices out there. This blog is a place that I can share my experience, advocate for myself and the Migraine community, and let others know that they're not alone. Even though there are times that I struggle to write, I try to share / spread hope in other ways. Being able to contribute, in even the smallest way, is huge to me.

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

Beating Myself Up

I'm feeling overwhelmed because I'm falling farther and farther behind with this month's blogging challenge.

My mind isn't working very well. It's been especially bad leading up to and following the second round of Botox injections I had (November 18th). Honestly, I just don't feel very well, and the stress of should's and supposed to's are simply overwhelming me. Not to mention, a wicked cold front is set to come through in a couple days, which normally knocks me down pretty hard. So, I need to step back before I just shut down. I hope I'm not away for long... I'll write when I feel moved to.

I'm asking for patience, grace, and forgiveness... from both my readers and myself.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Health Activist Writer's Awareness Challenge 2013: Let's Get Started!

Well, it's been a month and a half since I've posted on my blog. I apologize for my absence. It's been a whirlwind lately, and I needed to focus on things other than my blog. Not that things have really calmed down, but I'd like to get back to writing again - if for nothing else, to share some of the ups and downs that I've been experiencing lately. That being said...

Today marks the beginning of the Health Activist Writer's Month Challenge (HAWMC) for 2013. This is my 3rd year to participate in the challenge, so I'd like to do my best to complete the challenge again this year.

Why I write about my health online: I've written about this over the past two years, and my reasoning behind writing hasn't really changed.

• I Write About My Health Because...
• HAWMC Prompt 6: Why I Write About My Health

Why I've chosen to participate in HAWMC this year: I believe I answered this above - I'd like to get back to writing, and this is a challenge I've been participating in the past two years.

LET'S GET STARTED!

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Letter to My Mind & Body, Revisited

Today's post is to write a letter to my health. I've written a letter to my mind and body in a previous post, so I'm taking the "easy way out" and linking back to it (here).

I still have all the same questions, except I've now dealt with the chronic migraines for 4 years - so, I've healed from the neurostimulator, but still don't understand why it's not working / helping with my migraines.

I've really tried my best to keep my promise to continue trying to improve and to be more appreciative of how much my mind and body constantly endure. I'd like to renew that promise here and now.

Please take a couple minutes to read the letter to my mind and body.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Disclosure: An Open Book

Today's prompt is about disclosure - how I decide what to share or not.

I've always been a pretty private person, but I'm allowing myself to be more open and vulnerable.

I battle with things that have a huge stigma around them. Migraine disease, Fibromyalgia, IBS, depression, anxiety... these are all invisible illnesses. People can't easily see the battles I face with these diseases. But, I've found that by discussing parts of these illnesses that aren't openly discussed, I'm inviting others to know that they're not alone in what they're facing.

So, I try to be open and willing to share anything... with people that I feel are sincerely / genuinely asking (either out of concern and / or necessity). People that I meet in life that don't seem to really care, often get a shortened version of things. But, I simply go with my gut - unless I feel uncomfortable with something someone asks me (which, again, is usually due to insincerity of the person asking), I'm pretty much an open book.

It's taken me quite a long time to get to a point where I can share this much about my journey. And, I've found that allowing myself to be vulnerable has brought with it great blessings. Others will sometimes tell me that I've put words / a voice to something they, too, have been facing. I feel like I'm staying true to myself, and it seems to be helping validate aspects of some other people's experiences / journey.

I share because I can. I share because it helps me sort through things. I share because it may help someone else out there. I share because God has put a desire to in my heart.

This post was written as part of the National Health Blog Posting Month (NHBPM).

Why I Write

I know I haven't really been able to keep up with my blog lately, but I'm still here. We have some things going on with the family that have needed to be high priority. I'm going to try to participate in National Health Blog Posting Month (NHBPM) this month. I've been out of the writing/blogging world for a little while, so I hope I'm able to keep up. I'm not sure whether I'll follow the provided daily blog prompt or just write whatever comes to me, but I'm going to try to get a post in each day in November... I know I'm already starting a day late, so I hope to catch up and get 28-30 posts done this month.

The prompt for November 1st was "why I write about my health." I've written about this topic here and here. I can't really think of more to say on that topic right now, but here's a quote that I absolutely love:

"The role of a writer is not to say what we all can say, but what we are unable to say" - Anais Nin

This quote means a lot to me because I think that it describes the beauty and power or writing. There are times that I'm able to write things that even I can't say aloud. Writing, for me, is a way to express myself in ways that I may not otherwise be able to. I open up my heart and just let me fingers start typing.

"Fill your paper with the breathings of your heart" - William Wordsworth

I often surprise myself with what I'm able to express through writing because I go on tangents that need to be explored, but that I may not have been aware of (or had dismissed as unrelated) before. It's almost magical!

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Sharing About Migraine

I try my best to be very open about my life with migraine disease... at least here on my blog.

I open up to those loved ones that I trust 100%, but most of my conversation about how I'm doing with migraine disease are pretty superficial. I try to pay close attention, and if someone is asking questions and seems truly interested in learning more about my experiences and/or about migraine disease, I become an open book. I've learned so much through all of this (and I'm still learning), and I'm happy to share that with people that really want to know more.

I've always been able to open up more through my writing, but it's been a BIG step to put it out there and allow others into my world. Since I started this blog two years ago, I've been greatly blessed with a caring and supportive audience. Thanks to the fact that I've been met here with open arms, it's been much easier to allow myself to be more vulnerable than I would normally allow myself to be to others. And, it's so freeing!

I can't tell you how good it feels to be able to share my journey, and it's a bonus that my words and journey have helped others along the way. My faith gives me hope of better days, regardless of whether or not that includes chronic pain. It fills me up, and I can't help but share with others. Of course, I still struggle. But, I know that my God is watching over and working through me. It is only through Him that my words bring hope to others.

I Hope...
I hope for love, joy and laughter.
I hope we'll have more than we'll ever need.
I hope we'll have more happy ever afters.
I hope we can all live more fearlessly and we can lose all the pain & misery.
I hope, I hope.

Migraine Awareness Month Blogging Challenge #12: Self-Care

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Maria, at My Life Works Today!, is hosting this edition of the PFAM blog carnival. The topic is: "Self-care is..."

Self-care is...

eating-well, time-alone, cook, massage, letters, blog, write, music, journal, scrapbook, relax, walk, courage, persistent, adaptable, flexible, understanding, empathy, open, forgiving, ask, help, accepting, research, strength, peace, hope, prayer, faith, loving, friends, family, say-"no", nurture, cherish, gratitude, support, soul, embrace, collaborate, sharing, listening

There are several different categories here, but there's one that really stands out:

Relationships - with God, self, family, friends

Relationships with others can be a very important part of self-care, but not to the detriment of your relationship with God and with yourself. I know that I have trouble remembering this sometimes, but it's something I'm working on because it's so crucial to my self-care.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Six Sentence Story

Today's challenge is to focus on brevity by telling a story in only six sentences. While I'm not a fan of (or very good at) "micro-blogging," this was an interesting writing practice.

A Pretty Good Day

I woke up to the ever-present pain. The little bit of light that peeks through around the black-out curtains in my room strike my eyes, as though I'm staring directly into the sun. But, I try to make the most of the day, and be grateful for the many blessings that I do have. So, I spend some time writing on my blog, texting with a few of my chronic pain friends, and enjoying the quiet of being home alone. When my husband gets home, we spend time chatting with each other and cook dinner together. I'm up late because of my insomnia and pain, but I thank God for all that He's given me... especially for the day I just had with less-debilitating pain.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Writing With Style

I don't really have one single writing style.

I've always loved handwriting in a journal. However, I don't write very quickly, and I've had increased physical pain in my neck and shoulder that prevent how much I'm able to hand write before being in too much pain.

The increased pain is one reason I started online blogging. I still deal with the pain, but I'm able to get more of my thoughts out because I can type much quicker than I can write.

Most of the time, words just flow from my mind to my fingertips... whether I'm writing by hand or typing on the computer. There are times that I simply can't seem to type as fast as my mind is going, but I do my best.

I have written notes all over the apartment... it drives my husband crazy! I'm working on combining them and using the computer / tablet / phone to keep the number of paper notes down. But, sometimes it's easiest to just jot down a note on a piece of paper, so I'll have to work on utilizing my other resources more.

As far as blogging goes, I write from our computer. Sometimes the words just flow out. Other times, I "sit on a post" for months before actually posting it. Even if I'm working through stuff, and I know that my blog is constantly changing, I still feel like I need to reach a certain point of real understanding before I post something. I don't like to "publish" unfinished thoughts, which is dumb because where does it end?! Just because I publish something, doesn't mean that I can't continue to think, change, grow. In fact, it's only healthy and natural that I do! But, I'm a perfectionist... I'm working on it, though.

I tend to get some of my best writing done late at night. I used to be a night owl, but I've been trying to make and keep a better sleep schedule. But, I can't just leave so many thoughts moving around in my head... I have to try to get them out. So, I write.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).