INVisible Project: Migraine Edition

A few months back, the U.S. Pain Foundation contacted me about having my 13 year old migraineur, Colton, as one of the featured participants for their first migraine edition of the INVisible Project.

Without hesitation, Colton accepted the opportunity to share his story about the daily struggles he faces as a teen living with the abdominal and chronic migraine disease.

Colton felt it was important to speak up about the stigma that often accompanies a person battling against an invisible illness and how his chronic pain contributes to him missing out on so many school activities that he loves.

As a mom, I couldn’t be any more proud of my son’s courage and strength to overcome so many medical hurdles just to be a normal teen.

As a migraine and headache disorder advocate, I’m honored to have this young man alongside of me, fighting past the barriers of delimnas a patient faces to have a better quality of life while hoping a cure is found for a neurological condition over 37 million Americans live with.

To learn more about Colton and the other migraine INVisible Project participants, visit:

Colton De Keyser and Family

 

 

Common Types of Migraine Headaches and Symptoms in Kids

From February 2014 until the Fall of 2017, I spent countless hours with my son, Colton, in our local ER and with his neurologist searching for a solution to put an end the daily agony his migraine disease was inflicting upon him.

It wasn’t until this spring that the past 3 years of sleepless nights and worrying about the future of Colton’s health, was put to ease. We had finally discovered an effective treatment plan for his abdominal migraines.

My now 13 year old was back to living a better quality of life. He was attending school more often than not and looking forward to becoming a freshman in high school this upcoming year.

In efforts to help educate others about the common types of headaches and symptoms in kids, Diamond Headache Clinic put together this very informative slide show and asked that I share it with my readers.

You can learn more about the Diamond Headache Clinic here.

 

Advocacy Win for Migraine Awareness Month

When the U.S. Pain Foundation announced they drafted a template to submit to the Governor’s offices for Migraine Awareness Month, I gladly offered to help obtain one for the State of Wisconsin.

My past efforts as a Pain Ambassador for Wisconsin was successful during Pain Awareness Month. Twice, I successfully gained Governor Walker’s signature to declare September Pain Awareness Month and had no doubt he would continue showing his support for the Wisconsinites living with this neurological disease that currently has no cure.

Once again, Governor Walker came through for a cause I strongly believe in. He signed the first proclamation declaring June 2017 Migraine Awareness Month throughout the State of Wisconsin.

As someone that was diagnosed with the migraine disease 30 years ago and a mom of a teen that lives with abdominal migraine, this was a huge step for the whole migraine community.

 

 

 

Spoonie Mom Blogs: Jaime Sanders of Migraine Diva

 

Jaime Sanders of Migraine Diva

When I first met Jaime it was through one of the many online support groups for people living with chronic migraines. She was a friendly face amongst the sea of migraineurs that always had insightful content on Twitter and Facebook. Her positive outlook on the worst of days is part of what makes this spoonie mom remarkable.

A few months back I finally had a chance to speak to Jaime about the exciting things happening in her life.

During our very long conversation I learned that we had quite alot in common. The 30 years of living with migraines, more failed treatments than successful ones, the debilitating physical/emotional pain all the while trying to be the loving wife and mom was something we both connected on.

Her blog is a true reflection of who she really is. She’s very open about the way each of her ailments complicate her every day life. This woman does not hold anything back when she writes her posts. I admire that!

Despite all of the challenging obstacles that Jaime endured in her lifetime, she knew it was those unfortunate circumstances that would give her the courage to help educate others about chronic migraines and depression.

This past August, she was invited to sit on the More to Migraine Panel during the BlogHer Event.

This is a photo that features the More to Migraine Panel at the 2016 BlogHer event. Jaime joined Dr. Susan Hutchinson, a headache specialist and migraine sufferer, Shannon Albert, a patient speaker, and Serene Branson, who served as the moderator.

She even had the opportunity to join an Excedrin campaign that focused on fostering empathy from those that might not understand why migraines are not just headaches.

This is one of the videos that Jaime appears in.

http://www.reuters.com/brandfeatures/excedrin/hardship-and-hope

All I have to say is this woman is on fire! I see great things in Jaime’s future. Possibly a talk show with that stellar personality.

Jaime is a beautiful person on the inside as she is on the outside. I am truly honored to know this migraine diva and lucky enough to call her my friend.

To learn more about Jaime and view the other videos by Excedrin visit her blog:

http://themigrainediva.blogspot.com/

Don’t forget to show this woman some love by liking her Facebook Page:

https://www.facebook.com/themigrainediva/

You can also follow Jaime on Twitter or Instagram:

https://www.instagram.com/migrainediva/

 

 

 

Advocating Goals for 2017

2016 marked my 2nd year as an Advocate for Migraine and Headache Disorders, as well as, an Ambassador for the U.S. Pain Foundation.

In February I attended Headache On The Hill in Washington DC with my 13 year old son. We spent the day speaking with our State’s (Wisconsin) Congressional members about living with debilitating chronic migraines and cluster headaches. We both shared how our neurological diseases impacted our daily lives and how there’s a desperate need for more funding towards research.

Migraine and Headache Disorder Advocates lobbied in Washington DC for Headache On The Hill.

Not only did our State’s representives listen, they truly empathized with us. The best part was how they learned it is not always easy to find an effective treatment plan because each paitent responds differently than the other.

Case in point, the same medication and dosage that worked wonders for my son put me into a comatose state for weeks and landed me in the ER several times.

This was the first time I left Capitol Hill feeling accomplished as an Advocate.

I was especially proud of my son. He braved through his own migraine attack from the night before to join me and the other advocates hoping to gain the support of their own State’s congressional members.

Congressman Reid Ribble of Wisconsin and my 13 year old son after our meeting with his office during Headache On The Hill (February 2016)

My advocacy efforts did not end there.

In June I took to social media along with other paitents, caregivers and medical professionals to help raise awareness on migraines and headache disorders.

The entire month of June is dedicated to this cause as a means to end the unnecessary stigma that stems from individuals whom view migraines and cluster headaches as an unimportant health issue.

I furthered my dedication to raising awareness by doing a podcast with Joni Aldrich of Treatment S.O.S. We spent 45 minutes discussing various topics related to my health over the past 3 decades of my life and how I manage to care for a child that has just as debilitating migraines as my own.

Anytime I can openly discuss how my life has been negatively and positively impacted by migraines or cluster headaches, you better believe I’m going to do so.

With the rest of summer causing multiple health delimnas for myself and 13 year old, I took some time to rest and work on regaining control over my overactive immune system.

Once fall approached, I finally felt well enough to advocate locally.

In September, I joined other U.S. Pain Ambassadors by helping beautify cities and towns throughout my State in blue.

Spending the day in Downtown Green Bay and City Hall decorating designated areas with Beautify in Blue ribbons and signs (September 2016)

Beautify in Blue is a campaign created by the U.S. Pain Foundation that highlights the bravery, courage and perseverance of pain warriors during the month of September.

With the permission of business owners and the Mayor of Green Bay, I decorated designated areas with blue ribbons and signs.

Mayor Jim Schmitt of Green Bay and I in front of City Hall. Mayor Schmitt was more than happy to support the US Pain Foundation’s Beautify in Blue campaign.

In total there was 8 participants. 12 signs and numerous ribbons was displayed for Pain Awareness Month.

Some of the businesses that supported the US Pain Foundation’s campaign. The following Cities/Towns in Wisconsin had ribbons/signs placed on their property to honor pain awareness month: Mountain, Breed, Suring, Laona, Green Bay, Lakewood, and Antigo.

I would have loved to put more ribbons and signs out, but in the world of a spoonie the state of your health has the ability to render those ambitions.

Which brings me the advocating goals I’ve set for 2017.

With the State of Wisconsin electing a new congressmen for my district, I felt it was important that I be in Washington D.C. for this years Headache On The Hill. If anyone can convince a person why they should fully support paitents living with neurological diseases like migraines and cluster headaches, I am the right gal for the job.

The entire month of May will be my busiest.

The Arthritis Foundation and other partners observe Arthritis Awareness. The 12th is designated as Fibromyalgia Awareness Day. Not only does my mom have Rheumatoid Arthritis, she just received her latest test results and now we both have Fibromyalgia. It’s definitely not something I want to have in common with my mom, but we can take a little comfort in knowing we have one another for moral support.

Next on my list is taking part in my very first walk/run marathon in May.

Miles for Migraines will host a 2 mile walk/5K/10K run at the Diversey Harbour in Chicago. They are dedicated to raising awareness and funds towards migraines and other headache disorders.

Running isn’t in the cards for me, but I’ll gladly walk the miles with anyone else that is willing to join in our cause.

In June I’ll be on full mission mode for Migraine and Headache Disorder Awareness Month. I’ve been doing my part to help raise awareness throughout the month going on 4 years. I have to admit, it’s pretty amazing how many people will open up about their own experiences with migraines or cluster headaches once you’ve shared how your life has been impacted by these neurological conditions.

That alone, makes me feel that I’ve done my part as an Advocate.

As September approaches, I will contact Governor Scott Walker’s office to ask him to sign his 4th proclamation for Pain Awareness Month. This time around, I’d like to display Beautify In Blue signs around the State’s capital in Madison and setup an educational table at several health fairs or hospitals in Wisconsin.

Now that my goals are set, I am going to do my very best to achieve each and every one of them.

Wish me luck!