Friday, June 28, 2019

Attempting to Re-emerge

Photo by Tom van Hoogstraten on Unsplash
Back in February, I posted about Upcoming Happenings, and then I seem to have disappeared for a while. There's been a lot going on, and sometimes it's hard to share in the midst of it all. But, I do want to share, and I will. I'm trying to get back into the swing of writing... I hope you'll bear with me.

"Start where you are. 
Use what you have. 
Do what you can."
- Arthur Ashe

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

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.