Friday, February 8, 2019

Upcoming Happenings

I wrote in Farewell, 2018! about having a word or phrase to guide and grow in during different times.
Along those lines, there are some exciting events coming up over the next few months. Here's a sneak peek, but I'll definitely share more.

Headache on the Hill (February 12)
Photo by Nerdy Rockson on Unsplash
Headache on the Hill is an annual lobbying event in Washington, DC, where healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

Miles for Migraine Walk / Run (March 2)
Miles for Migraine is focused on improving the lives of those living with headache disorders, by increasing public awareness, fighting stigma, and raising funds for migraine research. 

Migraine World Summit (March 20-28)
Migraine World Summit is a virtual event that will provide talks from "over 30 of the world’s top migraine and headache experts, doctors, specialists, researchers, scientists, geneticists, psychologists, authors, and advocates." The event is FREE (4-5 talks will be released per day, and will be available for free for 24 hours). If you can't listen during those dates, the Summit will be available for purchase. Click here, to claim your ticket for the 2019 Migraine World Summit.

RetreatMigraine (April 12-14)
RetreatMigraine is a conference focused on people living with migraine disease. It will provide "support, community, disease and treatment education, advocacy training, and complementary therapy experiences."

Headache on the Hill
Miles for Migraine
Migraine World Summit
RetreatMigraine
   

Thursday, January 31, 2019

Head Above Water

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

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

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


Head Above Water by Avril Lavigne

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

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

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

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

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

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

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

[Chorus]

Tuesday, January 29, 2019

Checking In

I disappeared for a while, and I apologize. When I wrote Migrainous Musings, I was two weeks into an intense status migraine. Unfortunately, it persisted.

Following an unsuccessful round of corticosteroids, I completed a 3-day course of outpatient infusions. They brought it to a bit more manageable level, but it didn't help as much as they did last summer when I did them.

Photo by Kelly Sikkema on Unsplash
Then, I got sick. Deciphering whether head and face pain is from migraine or sinus pressure / mucus is tricky... much less how to treat it. A couple days in, the coughing started and made my asthma flare. Dealing with common sickness on top of chronic illness is unpleasant.

I've been doing my best to allow my mind and body the time and space to rest and heal, but it's hard.

Fatigue, depression, anxiety, insomnia from meds, boredom / difficulty distracting oneself... all on top of the ongoing pain and other symptoms.

I'm trying to complete what I can, when I can, how I can. Then, do my best to practice grace and compassion with myself.

"Give yourself the same compassion and grace that you give to the people in your life that you love the most." - Jennifer Rothschild

Thursday, January 3, 2019

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

Monday, December 31, 2018

Farewell, 2018!

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

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

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

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

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

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

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

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

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

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

Wednesday, December 26, 2018

Establishing Care With a New Provider: Step by Step

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

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

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

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

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

Disclaimer: Nothing on this blog is intended as medical or legal advice.

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