Suicide Prevention Awareness

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

Photo by Thought Catalog on Unsplash

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

We need to talk about our mental health. 

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

You're not alone.

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

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

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

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

Awareness

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

About Suicide

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

Resources

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

Helplines

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

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

Allowing What I Need Right Now

I'm grateful for words that show up at the perfect moment and resonate.

Photo by Andreas Wagner on Unsplash

"Allow yourself the things you need right now. Whether that's space, rest, support, or something else, know that you are not a burden for taking care of yourself." - To Write Love On Her Arms

I'll admit that I don't always do the best at identifying or allowing myself what I need in the moment. It's something I've been intentionally working on... and it feels like life is giving me tons of opportunities to practice.

I have read the above quote at different moments over the past few months. It remains something I need reminded of, even though my responses to it have varied. 

• I have no idea what I need right now or how to make it through this pain, this grief, this moment. None of those things will bring relief or reprieve. 
• I am doing all the things I'm able to do for what I need right now, including, acknowledging that various pains (physical, mental, emotional) often team up with one another and have a propensity for telling lies. 

I'm fighting back with truths:

• This moment is hard, and I will make it through.
• The pain and grief are real, and I'm anchored to the One that will see me through each wave of every storm.
• I am doing what I can to take care of myself, and that is always enough.️

I know that there's likely more I want to write and explore on the topic. I'm choosing to focus on getting through the current storm, jotting thoughts down as I'm able, and being ok with revisiting them when I'm better able to. 

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

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

An Update & More Migrainous Musings

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

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

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

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

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

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

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

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

Update 1 (March 3):

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

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

Update 2 (March 4):

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

Update 3 (March 5):

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

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

Headache on the Hill: Behind the Scenes

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

Photo by Ian Schneider on Unsplash

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

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

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

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

Traveling alone

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

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

Reaching out for support

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

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

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

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

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

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

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

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

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

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.

https://youtu.be/EKF6ghfcQic

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]

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:

• My Journey
• The First Step
• Step by Step

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:

• My Journey
• The First Step
• Step by Step

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:

• My Journey
• The First Step
• Step by Step

Who Helps You Hope?

Who Helps You Hope?: Which person in your life has helped you most to hold on to hope, despite your Migraines or Headaches and how?

There are several people that immediately come to mind... most notably, my husband. He's with me, day in and day out. He reminds me to be gentle with myself, when I'm unable to do things. He helps me find humor and joy in even the smallest, most mundane of things. He is my greatest blessing. 

I've previously written about some of the ways that people have helped me hold on to hope:

• Migraine Awareness Month Blogging Challenge #27: In My Head & Heart
• Caregivers: My Husband
• Caregivers: My Parents

I'm so grateful to have people in my life that truly love me. They know how important my faith is. There is always someone (or several) that help point me back to the Lord (my source of eternal hope), when I'm struggling. So, to everyone that has helped me hold on to hope, especially when I struggled to hold onto it myself... THANK YOU!!!

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

(In)dependence

As I was writing a post (Evolution: How Being a Patient Has Changed Me) for the National Health Blog Posting Month (NHBPM) the other day, I was reminded of a blog post that I started writing almost 2.5 years ago! So, here's something that I wrote the end of June 2011.

I previously wrote a blog post, Frustration: Loss of Independence & Lack of Compassion, that I'd like to expand upon.

As a person with chronic pain, I'm having to learn to live with limitations that I never had before my accident. The constant, debilitating pain has definitely challenged my autonomy and self-reliance.

Before my car accident, I was pretty independent and autonomous. I loved having my friends and family to back me up and/or help when I needed it, but I also loved being able to take care of myself.

Since my car accident, however, things have been much different. Suddenly, I had to try to learn to depend on others because I was unable to take care of myself. I've never been good at letting others take care of me... which was fine... until I actually had/needed to do it.

I don't like depending on others. But, I think I've gotten better at it... at least better than I was before the accident.

I often cannot make plans to do something. Believe me, I used to be queen of making plans! Making to-do lists used to be enjoyable. Now, it's necessary. If I don't write it down... I'll probably forget it.

I have to see how I'm feeling the day-of an event, which is difficult (physically and emotionally). Then, I have to think several steps ahead about the situation I'll be in... sitting, standing, walking, driving, sounds, lights, crowds, etc... it's overwhelming just thinking about, so it's sometimes easier to just stay home.

Even on short outings, I have to be prepared for a migraine attack, so I have to carry "resources" with me (such as: snack/food, drink, meds, remote for my neurostimulator). It may seem like I'm packing enough stuff for a weekend trip, but I need to have some things on hand... just in case. This is something that many people simply don't understand. I can't just run out the door... I have to be able to gather my things, first.

It sometimes takes me a week from when I need to go to the grocery store, to when I actually go (and that's because my husband goes with me... it'd probably be even longer, if I was on my own). I can drive my car... when I have enough energy and I don't have a migraine. I can go shopping... when I feel up to it. It's so frustrating!

I have become so dependent on my husband. He is supportive on every level... he's such a blessing! He knows how to call my bluff, when I say that I'm alright but I'm really tired/depleted and/or hurting. He helps support me, when I have trouble balancing and walking on my own. It has taken me a long time to get past the "I don't need your help walking," but now I'm mostly just grateful that he's there to be able to assist me. He drives me to doctor appointments, and short shopping trips (mostly for groceries). He takes care of me. ...I'm finally having at least small windows of opportunity that allow me to help a bit more than I used to. :-)

I'm thankful that my mind is still at least fighting to remain independent. I have cognitive difficulties, so it may take me a lot longer to process things... but, I enjoy seeing glimpses of ME, and those glimpses usually come via my thoughts.

UPDATE (November 2013):
Reading through what I wrote 2.5 years ago, allows me to see how much I've changed and grown... what things are the same, and what things are different. Many of the limitations I previously wrote about are still limitations that I deal with on a daily basis. However, I think I've reached a level of acceptance. I'm not exactly sure how to explain it, but I wanted to include a short note / update at the end of this post.

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

Evolution: How Being a Patient Has Changed Me

Today's topic is "Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?"

There are so many things that come to mind for this topic. I have changed a lot, since I started living with chronic debilitating pain 5-years ago. I've written quite a lot on the topic of change... here's one that jumps out in my mind:  Change: Life Since the Accident (Jan 6).

Slowing down
I've learned (and am still learning) to slow down. It hasn't been easy, as I was always on the go, before my accident. I planned nearly every hour of my day... man, was I a planner! But, that doesn't work for me now. I have to be mindful of my body's limitations in a way that I never did before. Otherwise, my body may just shut down and/or I later pay a very high price. So, I find my life is a much slower pace than most others, but that's what I need.

Living in the present
I'm learning more and more to simply live in the present moment. It's harder for me to do at some times than others, but I'm much better at doing it than I used to... I still have a way to go, though. When I'm having good moments, I do my best to cherish and enjoy them, regardless of how long they last. When I'm having very painful moments, I do my best to tend to my body and turn my focus on God - thanking Him for what I have, asking for His peace through the storm, praying for others who are experiencing any pain, etc.

Depending on others
I grew up to be an independent woman, and I've always taken pride in that. So, being thrust into a position of truly needing to depend on others was a huge (undesired) lesson in humility, among other things. I still have difficulty with asking for help, but I'm slowly becoming more comfortable with asking for and accepting assistance from others. I think it's an important lesson for everyone - not to depend on others for everything, but to be able to ask for and accept help when needed.
* There's a blog post that I started almost 2.5 years ago regarding independence / dependence... I think I'll work on finishing and posting that in the next few days. 

Gratitude
I find myself filled with gratitude in a different way than I was before. My list of things I'm grateful for includes even the simplest of things that I used to just take for granted. And, as humbling as that can sometimes be, it keeps me focused on the things, big and small, that God has blessed me with.

I have changed
I've become more focused on my priorities, stronger in my faith, more outspoken in health matters (especially concerning justice for those with disabilities), more understanding of others, and more forgiving of myself and others.

Goals have changed
My goals have changed. Sometimes I feel like a failure because I don't have my 5- or 10- (and so on) year plan on the tip of my tongue. My goals aren't SMART (specific, measurable, attainable, relevant, time-bound), like I was trained to believe is necessary. Perhaps it is necessary, but I don't feel a specific drive or calling of something to do in my life right now. And, while that sometimes makes me extremely anxious and like something must be wrong with me, I'm doing my best to trust that God has a plan for me.

Overall, even though I don't have SMART goals, I do feel more focused on a clear life purpose: to faithfully follow God, allowing Him to work in and through me wherever I am and however He desires. Now, that's not to say that I don't struggle along the way. I don't have any clue what I'm supposed to be doing with my life, but I'm doing my best to root myself in the One who does know.

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

Compassion in Greece, continued

I previously wrote about an experience I had in Greece (back in 2005): Compassion in Greece.

While on a class trip to Athens, Greece, I ended up with a monster migraine. One of the professors there responded with such kindness and compassion. He helped me, and then supported my decision to not miss the day at the Acropolis (despite my having sunglasses on, a jacket over my head, and needing assistance walking). He didn't question or belittle me. He simply offered me understanding, compassion, and kindness. And, that's what I hope I can offer to others.

It's so interesting to me, looking back from where I am today. I've dealt with frequent headaches for as long as I can remember. I had infrequent migraines, then, too (though, most of those were walks in the park compared to the migraines I've had since the accident). So much has changed, yet the love and provision of my God has stayed the same. He is always there.

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

Compassion in Greece

Yesterday, I posted about past anniversaries of my car accident:

• 3-Year Anniversary of Car Accident
• 4-Year Anniversary of Car Accident

October 10, 2013 marked the fifth anniversary of my car accident, here's what I wrote...

I had some anxiety leading up to today because I've had some difficulty on this day in the past. But, God blessed me with bringing a memory to my mind, reminding me that He always provides for my needs. Thanks to a Facebook post from my Alma Mater asking what our fondest memory of a certain professor is, I was able to re-live a moment that was painful, but comforting... and writing this blog post has allowed me to re-live beyond that moment.

Just a little back-story... I spent a semester studying abroad at my Alma Mater's campus near Rome. During the semester, the entire class and the Rome semester professors spend 10 days travelling together to a few different cities in Greece. Our Western Civilization professor offered amazing lectures at many of the sites along the way. It was truly a once-in-a-lifetime experience, and I'm so grateful that I was able to participate!

The setting is Athens, Greece.

It was Carnival in the Eastern Orthodox Church (different date than the Western Christian calendar - think Mardi Gras), so the city was a big celebration. I decided to join the celebration in the evening with a group of friends - we were going to spend some time enjoying the festivities and try to find somewhere open to get something to eat.

After wandering around the city for a while, a migraine hit... HARD.

All I could think of was how am I going to get out of this crowd of people and back to the hotel?! I mentioned that I needed to leave immediately to my friends, and thankfully one of the guys said that he'd walk me back to the hotel and make sure I was okay. I told him I needed to get something to eat and something with caffeine to drink - we were able to find a Coke quickly, and then we stopped at the McDonald's just around the corner from the hotel for some chicken nuggets.

Unfortunately, I think I'd forgotten my migraine medication back at the Rome campus. See, these were before the days of chronic migraines... before the days of carrying my meds everywhere I go. I had frequent headaches, but was able to function through most of them. But, my more severe migraines weren't all that often. So, getting something to eat, caffeine to drink, and getting back to a dark / quiet hotel room was my plan of attack.

The girls I happened to be roomed with for those few days were understanding and helped however they could. But, the migraine continued.

If my memory serves me well... I spent the next day in the hotel room, doing my best to sleep off the pain. Honestly, I'm not exactly sure what all happened, but I'm pretty sure I missed out on some things. A large group of us went to church service that evening for Ash Wednesday (in the Eastern Orthodox Church). I struggled making it through the service, and talked with a professor's wife afterward to see if she happened to have any medicine that might help. Again, these were before the days that over-the-counter meds were the equivalent to tic-tacs for me. She didn't have anything, but apparently one of the professors (or his fiance) dealt with migraines and had some meds and knowledge of migraine. 

I talked with this professor, and he helped get me some meds and made sure I was going to be okay. He told me that I'd be excused from the following day's class trip to the Acropolis. I told him that there was NO way that I was going to miss that trip! How could I miss a once-in-a-lifetime opportunity like that?!?! He assured me that he'd help any way he could, if I decided to go the following day.

He checked on me the next morning at breakfast. I was still in quite a lot of pain, but was beyond determined to go with the group. So, he gave me a few suggestions on how to make it through the day outside in the blinding sun. I had sunglasses, a borrowed hat, a jacket or blanket draped over my head... luckily, we'd walk a bit and then stop and sit for lectures at various locations. He checked on me off and on throughout the day. I listened to him lecture. Someone helped make sure I was alright walking places. And, I peeked my head out to see the sites as much as I possibly could.

The Acropolis is one of the MOST interesting and beautiful sites I've ever seen! I would have deeply regretted missing the opportunity to visit it, so I'm glad that I was able to push through the pain and participate as much as I could. To this day, Greece (especially the Acropolis in Athens) is one of my favorite places in the world!

*I'm going to post a follow-up post to this later today, to share a few more reflections... so, please stay tuned.

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

Weary

I've been so weary.

I'm tired of counting pills to make sure I can at least partially treat my migraines until I can get my next prescription. I'm tired of missing family events, including my now 6-week old nephew, Evan. I'm tired of having to reschedule and/or cancel plans. I'm tired of the often excruciating pain. I'm tired of feeling so down. I'm tired of struggling to eat, which is a daily battle. I'm tired of the anxiety and subsequent feelings of helplessness regarding some family stuff going on.

I'm just tired.

Caregivers: My Husband

© 2009 Jamie V.

My husband and I were married a year after my accident. We had been dating for over six years, when he proposed just little under two months before the accident.

While we were going out, Jeremy had taken care of me through seasonal sickness (colds, etc). So, I knew that he could be a good caregiver, at least on a short-term basis.

Once I was in the car accident, I hated to think that he'd be immediately placed into a caregiver role, once we were married. We knew that our married life wouldn't look like many other marriages between people our age. We were okay with that, though, because our entire relationship had "looked different" - our relationship was long-distance for almost 6.5 years, including the two months immediately following our wedding. But, it has worked for us (which isn't to say that it's been easy).

Jeremy has proven to be the perfect person for me in so many ways - my friend, my husband, my caregiver. I am truly BLESSED! He is loving, caring, supportive, perceptive.

He's always taken such good care of me. And, since I've been dealing with my chronic migraines, he's only done more. He allows me the freedom to do what I can and to try doing more / to regain some independence, but he takes care of the things that I cannot do anymore or that I'm struggling with due to the migraines.

He takes care of our Honey Bee (dog), and he takes care of the house chores (I try to help as much as I'm able). He often goes grocery shopping and cooks for us.

He's my biggest cheerleader, when I try doing more (though he helps me to not overdo it) and / or try things that I've struggled with since the accident. He helps remind me to celebrate even the smallest of accomplishments and to be thankful for what I have and what I can do.

© 2012 Jamie V.

Jeremy makes sure I take my medications on schedule. He works from home, if I'm starting a new medication or am dealing with a particularly bad migraine. He goes with me to all of my doctor appointments. He helps me determine when I should use my migraine meds, and when I need to get emergency care.

He knows me so well... the me behind the mask. He's been there for me through the best and the worst times. I feel his love through everything he does. And, I try my hardest to share my love with him in everything I do.

I know that God has placed Jeremy in my life to be my lifelong partner, and I'm so very grateful for him.

This post was written as part of the National Health Blog Posting Month (NHBPM), as well as the November PFAM blog carnival.

Caregivers: My Parents

My parents have always been a huge support to me. When I was in a car accident in October 2008, I needed to move back in to my parents' house. They became my primary caregivers, as my mind and body tried to heal.

There are some things in those first few months that are pretty blurry - I remember the day of the accident very well, but several months after the accident are only accounted for by my incessant note-taking of everything and my parents' notes and memories.

What I do recall, is that my parents were always there for me (as has been the case my entire life).

• My mom went with me to every doctor appointment (and there were A LOT!) and meeting with the attorney, for at least the first year after the accident. She took notes during visits and asked questions that I either forgot or didn't think to ask. She was my caregiver and my advocate, and I feel that we grew even closer under very difficult circumstances. She continues to be a support by asking how things are going, asking for updates on how doctor appointments go, and being understanding of my limitations and needs.

• My dad (and my father-in-law) came down to College Station to pick me and my car up (weekend of the accident). My dad offered care and support in different ways than my mom, but still so very needed. He had a car accident several years before that changed his life, too. He helped me to accept and work within the limitations that my illness placed on me (including breaking tasks down into baby steps), and to be able to ask for help (neither of us has ever been good at). We've always understood and related to one another in a special way, and this was just a different situation that we shared.

I will be forever grateful for my parents love, care, and support! I know that caring for me at some of my darkest points, and seeing me struggle so much with things much deeper than the pain, was extremely difficult for them. But, their presence and unconditional love will never be forgotten. Their unwavering love and support helped me through, as it continues to do.

This post was written as part of the National Health Blog Posting Month (NHBPM), as well as the November PFAM blog carnival.

Stages of Grief: Depression

I think I've written about the stages of grief before, so I'll just do a quick overview. Elizabeth Kubler-Ross put forth a model of how we work through and grieve a loss.

The five stages of grief are:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These stages are not always all felt by someone experiencing a loss, and they don't always happen in chronological order. You can move between them, and even go through some multiple times.

People living with chronic illness often continue through these different emotions, as the pain continues, there are changes in one's limitations, and so forth. Even if someone reaches a place of acceptance, they can fall back to the other stages. It can feel like there are waves of acceptance. But, I'm stuck in a dip / valley, and I'm not sure how I got here or how to get out. I didn't even realize that I had come to some sort of peace with things... until I no longer had that level of acceptance (hindsight's 20/20, I guess).

I'm finding myself in the depression part of the model. I'm trying hard not to sink into a deep depression, but I know depression well enough to know that I'm there... just trying not to slide further into the darkness of depression. I need to reach out to a therapist, but it's difficult to do. I have an accountability partner, which will hopefully help me get the help I need. But, it's a huge step that I even am writing this out.

Depression isn't something that you can really articulate. I feel somehow disconnected (dissociation) from God, myself, and others. I don't find joy in some of my hobbies. I'm trying to go through the motions that I know I should take, but I really just don't care. I just feel unmotivated and STUCK.

It doesn't help that I also deal with anxiety and panic attacks, which have both been worsening. I sometimes feel weird and need to sit down, but then I need to stand and/or move around... so, I'll just sit, stand, sit, stand, and so on. Meanwhile, my heart feels like it's about to beat out of my chest. I take my blood pressure and pulse, and they're normal... NORMAL?! How can they be normal, when I clearly know that something's wrong?!

These feelings of depression and worsening of anxiety didn't come on quickly (it's been a build up over months), so I can't expect them to just go away. I just need to find the strength and courage to reach out for help and start climbing out of the pit. I'm NOT done fighting yet!

Migraine Awareness Month Blogging Challenge #29: Chronic Migraine Awareness Day

Today is Chronic Migraine Awareness Day. Apparently, I'm recognizing today with a low-grade Migraine (at least it's not full-blown, though).

According to the International Headache Society, Chronic Migraine is "Migraine headache occurring on 15 or more days per month for more than 3 months in the absence of medication overuse" (ICHD-II).

There are many different acts of kindness that can be done for those living with Chronic Migraine, including:

• Offer to go to the doctor with a Migraineur and offer to take notes for them.
• Offer to help with food - prepare and deliver a meal for their family; fix a few frozen meals that can be easily reheated; help with grocery shopping (either go with or offer to pick up a some items for them).
• Offer to help around the house (laundry, cleaning, help finishing an unfinished project).
• Offer to watch a Migraineur's child(ren) for a few hours.
• Offer to have a spontaneous outing on their next good day... whenever that might be (even if it's just a quick outing for sno-cones - mmm, sno-cones).

Many Migraineurs are dealing with feelings of helplessness, and it can be extremely difficult to ask for help. So, it helps to keep offers specific - "Let me know if you need anything" or "Can I do anything to help?" will rarely result in someone reaching out and asking for that help because they're simply overwhelming. Also, please be sincere. If you're not willing to prepare a meal, don't offer to do it - if you offer and don't follow through, think of how the Migraineur feels after allowing him/herself to be vulnerable and accept your offer of help.

Remember, even small gestures of kindness can mean so very much.

Really, I think the things Migraineurs would truly cherish most are things that we ALL need (healthy or disabled, young or old) - companionship / love, comfort, understanding, and support. Here are some ways to show the Migraineur in your life that you care:

• Be forgiving and understanding when we have to cancel (even last minute) plans - Believe me, we hate to cancel plans more than you hate that we had to cancel - many of us have quite a lot of guilt built up around letting others down.
• Have at least a basic understanding of what Migraine disease really is - it's NOT "just a headache," it's a neurological disorder that affects every system of the body - and please help us dispel the misunderstandings and stigmatization surrounding Migraine disease.
• Be mindful of our needs - to avoid bright lighting (for example, when sitting down at a restaurant), scents/smells (including perfume, lotions, candles, air fresheners, etc), noise/crowds (for example, I can't deal with going to a club or concert), food sensitivities (migraine-friendly food / drinks) - I know this is a lot to try to remember, but simply asking if there's anything you can do to help reduce some of our triggers can mean so much (and help us to enjoy themselves more).
• Keep in touch - a quick email, text message, letter, etc can brighten our day (even if it's just to let us know that you're thinking of us) - we care about what's going on in your life, too.
• Help us remember that there's always hope and we are loved, despite our disability.

A fellow chronic Migraineur wrote a letter to people without Migraine that I think is very well-written. Please take a few minutes to read it, here. I share her sentiment: "I do not want your pity or even your sympathy. I want you to have even the tiniest grasp that migraine is not a headache... [I] beg for a smidgen of your comprehension" (Kerrie Smyres).

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).