Sunday, June 21, 2020

Shades for Migraine 2020

Today, June 21, is Migraine Solidarity Day (aka, Shades for Migraine).

Shades for Migraine is a global campaign hosted by the Association of Migraine Disorders to promote migraine awareness and show support for the 1 billion people living with migraine disease worldwide. 

The collaborative campaign is simple to participate in: wear a pair of sunglasses of June 21, post a photo to social media with the hashtag #ShadesForMigraine, and challenge others to take part, too.

"Show you care, wear a pair."

Quick shoutout to my Dad: Happy Father's Day! 

© 2020 Jamie V.
© 2020 Jamie V.
© 2020 Jamie V.

Tuesday, June 16, 2020

Headache on the Hill Fundraising Event

Taking part in headache disorders advocacy is an important part of my journey living with chronic pain. While I participate in advocacy work throughout the year, one of my favorite events is Headache on the Hill (HOH) - you can follow the link to read about my HOH 2020 experience.

HOH is an annual event that brings together a large group of advocates in DC to share our stories, and call on lawmakers to recognize the impact and take action to reduce the burden (individual and societal) of headache disorders.

The Alliance for Headache Disorders Advocacy (AHDA) organizes the annual HOH event and covers one night hotel for each attending advocate. Most advocates must cover the remaining travel costs out of their own pockets.

In order to support the HOH event and provide assistance with travel scholarships for advocates to participate, Miles for Migraine is collaboratively* hosting a first-annual walk/run/relax fundraiser event from June 29 to July 7. 

There are a few different ways you can show your support: 
  • Donate (any amount is greatly appreciated)
  • Participate by walking, running, or relaxing (from 6/29 to 7/7)
  • Share this post on social media 
© 2020 Jamie V.
This link takes you to the event page: HOH walk run relax event. From there, you can Pledge a Team (Chronic Migraine Warrior), Donate to a Participant (Jamie Valendy), or Register (and join my team). 

This link takes you to my team page: Team Chronic Migraine Warrior. From there, you can Make a donation or Join my team.

Please join me!

"Each one of us can make a difference. Together we make a change." - Barbara Mikulski

*Participating non-profit organizations for this event include:

Tuesday, June 9, 2020

Migraine World Summit 2020 Replay

The Migraine World Summit is a virtual event that broadcasts interviews from over 30 leading experts, including doctors and specialists, to share about treatments, research, and strategies to help you manage and improve your headache disorder. 

The 2020 event took place in March. Due to the significant challenges we’re facing in the midst of the Covid-19 pandemic, the event is being offered again from June 10-19
The event is FREE: the interviews will be open according to the event schedule (4 per day, plus 1 webinar), changing each day at 6pm ET. You can access the interviews directly on the website free for 24 hours. If you’d like to have lifetime access to the interviews, you can purchase the Summit All-Access Pass (affiliate link).

Tune in June 9 at 5pm ET for a Live Pre-Summit Q&A with Hosts, Carl Cincinnato and Paula Dumas. They’ll explain why the Summit is being replayed, what’s new about the June Replay, and answer other questions. It’s free to join, but you must register beforehand. Click the link to register (no sign up required) for the Live Pre-Summit Q&A.

Monday, June 1, 2020

Wear Purple & Headache at Work

June 1 is the first day of Migraine and Headache Awareness Month (MHAM). Today, we’re highlighting a headache awareness initiative and headache at work. 

© 2020 Jamie V.
Wear Purple to Work (at Home)

The National Headache Foundation (NHF) created an initiative to help promote migraine and headache awareness: Wear Purple to Work (at Home). On June 1, wear purple and share a photo on social media to show solidarity for the 40+ million people in America living with headache disorders. 

When you share on social media, please use the hashtags: #MHAM #MHAM2020.

Headache at Work

Work often includes facing a slew of headache and migraine triggers that can stack and result in increased attacks: bright lights, computer screens, strong odors / scents, loud noises, stress, rigid schedules and deadlines, the list goes on. 

Many people are working from home during the pandemic. For some, work being moved to a virtual / from home format is proving to allow the flexibility needed to be a more productive worker and have improved quality of life.

It’s unclear what the work landscape will look like, as more workplaces decide how to move forward. It remains important to recognize the need for employer accommodations for those living with headache disorders. Hopefully these months of virtual workplaces will provide the evidence needed for companies to consider offering employees more options moving forward. 

Once workplaces bring people back to the office, the Migraine at Work campaign provides tools and resources for employers and employees to utilize. 

"I don't have a dis-ability, I have a different-ability." - Robert M. Hensel

Sunday, May 31, 2020

Migraine and Headache Awareness Month (MHAM) 2020

June is Migraine and Headache Awareness (MHAM) Month. This year’s theme is: You need community. #MHAM #MHAM2020 #YouNeedCommunity

If you're interested in learning more or getting involved, Migraine Headache Awareness Month is a great resource for information regarding upcoming activities being hosted by various individuals and organizations within the headache disorders community.

I’ve participated in Migraine and Headache Awareness Month, since it started in 2012. Some years, I’ve been able to participate more than others. One thing that hasn’t changed, is the excitement of coming together with others in the community to share our stories and do what we can to raise awareness, decrease stigma, and make the invisible visible. 

In the past, there have been daily blog and social media challenges. I’ve enjoyed participating in those ways, but I’ve also struggled with feeling guilt and shame for not being able to keep up. That’s something I continue to work on, as the pressure to perform is self-inflicted. 

I’m not sure how this year’s awareness month will look, from my participation standpoint. Perhaps I’ll take the opportunity to share some photos and stories from previous advocacy activities and even some attacks (I’ll be sure to label with the date, so it’s clear when they were). Whatever it looks like, I’ll write and share… and, I’ll be proud to be part of a community of people that “get it.” 

Here’s how to find me and follow along: Blog subscribe by emailFacebookInstagram.

“One of the most important things you can do on this earth is to let people know they are not alone.”
 - Shannon L. Alder 

Thursday, March 5, 2020

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

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.