Adventures of a Spoonie Mom is Now a Proud Partner of the American Migraine Foundation!

We’ve joined the American Migraine Foundation to fight debilitating   head pain together

As part of our ongoing commitment to providing meaningful information, resources and support for those living with migraine, Adventures of a Spoonie Mom is thrilled to announce our new partnership with the American Migraine Foundation.

The American Migraine Foundation is the official resource for millions of Americans living with migraine seeking reliable information about diagnosis, treatment and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks, and to drive impactful research into the third most common and sixth most disabling disease around the globe.

“Adventures of a Spoonie Mom is a cornerstone organization in the migraine world. It is truly an honor to work alongside them as we #MoveAgainstMigraine,” says American Migraine Foundation Executive Director Meghan Buzby. “We look forward to continuing to make an impact together.”

Like Adventures of a Spoonie Mom, the American Migraine Foundation is dedicated to helping people with migraine live meaningful and pain-free lives. We’re so excited to join forces with AMF to provide support, advocacy and treatment innovations to people living with this disabling disease.

The American Migraine Foundation supports people living with migraine by providing free, comprehensive information sourced directly from headache specialists, by maintaining a searchable database and map to improve access to headache specialists, by investing in research efforts towards new, innovative treatments, and by creating support networks and communities where people with migraine can support and learn from each other.

We couldn’t be more excited about this collaboration. Be on the lookout for additional resources and enhanced communication from our team in the very near future.

Together, we are as relentless as migraine

PAINWeekEND 2018: Milwaukee, Wisconsin

 

Last weekend, I had the opportunity to attend my first PainWeek conference in Milwaukee. As an Ambassador for the U.S. Pain Foundation, I try my best to participate in several events throughout the year. When I happen to come across a post from PainWeek’s Instagram account about a conference taking place in Wisconsin, I contacted them about having a table in their exhibit.  

PAINWeekEnd™ Regional Conference Series is comprised of regional, 1-day professional conferences for healthcare professionals in all disciplines with an interest in pain management. The goal of the PAINWeekEnd programs is to provide a conveniently located preview of 6 course hours (out of 120+) that attendees can expect to see at the PAINWeek® National Conference.

Their target audience is Frontline clinicians: physicians, nurse practitioners, physician assistants, and pharmacists.

I was approved to set-up a table with information that the attendees could learn more about the various programs offered through the U.S. Pain Foundation. I spent all day Saturday meeting with individuals in the medical field from Michigan, Wisconsin, and Illinois. I also handed out bags, pens, pain warrior bracelets, magazines, and jar grips. Which judging by the almost empty table, was a huge hit!

 

Headache on the Hill 2018

 

***Disclosure: The U.S. Pain Foundation sponsored my trip, and my teenage son’s to Washington D.C. this year.  I’ve served as a U.S. Pain Foundation Ambassador for the State of Wisconsin for the past four years.  All opinions are my own***

 

I had the privilege to attend my 3rd Headache on the Hill this year. My son, Colton, was able to join me as well. This was his 2nd time to lobby on Capitol Hill. We both have a history of living with the migraine disease and were more than willing to share our own experiences with our state’s congressional members.

What is Headache on the Hill?

This is an annual lobbying event in Washington DC, organized by the Alliance for Headache Disorders Advocacy (AHDA). The AHDA brings health professionals, migraine & cluster headache advocates and patients themselves to unite on our requests or “asks” of Congress. These asks are typically focused around improving awareness about the impact of Headache Disorders and in turn impacting the available research funding.

Headache on the Hill (HOH) is a two-day event each year; The first day includes an issues briefing and advocacy training session. The second day is for HOH participants to visit the offices of their respective congressional delegation on Capitol Hill. The AHDA will pre-arrange appointments with the offices of at least one congressman and two senators for each HOH participant.

Colton and I traveled out of Green Bay at 7 A.M. which wasn’t too bad except for when we arrived in Chicago with only 30 minutes to catch our flight, and I was hit with a migraine attack while running to our departure gate.

The smell of something burning immediately triggered an attack. I always carry my migraine emergency kit with me at all times which made it easy for me to down my abortive as I tried to dash through the crowds of people. Unfortunately, I wasn’t able to successfully able to rid myself of this level 5-6 migraine and had to fly with dizziness, nausea, and sensitivity to light.

Upon landing at Ronald Reagan International, Colton had the misfortune of getting hit with a migraine attack. His symptoms weren’t as debilitating as mine were on the plane, but he still needed to let his nausea subside long enough so that we could get a taxi to the hotel.

Once we made it to the Ritz Carlton in Pentagon City, I checked into our room and planned on meeting up with the other attendees before our training session, but my head had other plans. I was now experiencing a second migraine attack of the day. This time my vertigo became so overwhelming that I had to lie down for an hour to avoid falling while I walked.

When the symptoms finally subsided, Colton and I made our way down to the conference room where the training was already in progress. The room was filled with so many new faces. Most of those people where ones I’ve only met online through various headache disorder support groups.

The focus during this meeting was to discuss our “Ask”. An “ask,” is the actionable request we were making to our Congressmen and Senators. We needed a clear understanding of bill HR4733, aka “Opioids and STOP Pain Initiative Act of 2017” and ask our representatives to co-sign this bill.

According to the AHDA, the chronic pain and opioids crisis is the most costly healthcare problem ever. This crisis costs over $1.1 trillion per year, making it the most costly health care problem in our nation’s history. Pain costs $560 to $635 billion (4), and opioid addiction costs $504 billion. The AHDA states that this is equal to the combined revenues of 4 of the largest U.S. companies or 5.6% of the U.S. government’s revenue.

As we took a short break, I had a chance to meet the other advocate from Madison, Wisconsin. She was excited about attending her first Headache on the Hill, and I was elated to have another person from my state to spend the day lobbying with on Tuesday.

The second part of our training continued for another hour and a half. Unfortunately, Colton was slammed with his 2nd migraine attack in the middle of that session. I  helped him up to our room to rest while I returned to pick up great pointers from a respectable neurologist on how we could efficiently approach our congressional members on Super Tuesday.

When our training wrapped for the afternoon, I opted out of meeting the new attendees to go check up on my teen. Usually, he needs to sleep with his medications to feel better. In this case, Colton required 8 hours of sleep and additional meds to lessen his debilitating symptoms.

I kept my cell on ring incase Colton needed help with something and returned downstairs for the sponsored Dinner by CHAMP (Coalition for Headache And Migraine Patients.) After the meal, the attendees were treated to a sneak peek of the new documentary Out of My Head, with a Q&A to follow with the filmmakers.

With a busy Tuesday ahead of me, I retired to my room for the night hoping my health wouldn’t be an issue like it had most of that day. Unfortunately for me, my body rebelled and in a huge way. I woke up with severe vertigo and nausea that none of my natural treatments and prescription abortives, could lessen.

Getting dressed then making it to the charter buses on time was a considerable challenge. Thankfully, Colton and Mia, our other advocate from Wisconsin, was there to help me navigate from one side of the congressional offices to the other.

A sponsored lunch was provided by The Headache & Migraine Policy Forum. It gave the advocates a chance to rest, grab a bite to eat and listen to a panel discuss the issues that our active duty and veteran military members with neurological disorders face when seeking medical care. I walked away, completely baffled by the fact the VA hospitals are not equipped to handle the volume of military patients looking for relief from their debilitating symptoms. These men and women served are serving our country deserve better options. Hopefully, with more advocates fighting on their behalf, that will soon be a possibility.

With so much going on earlier that morning with my health, I wanted to continue to the last two meetings with my state’s congressional members. That just wasn’t going to happen. Once again, my vertigo reared its ugly head making me come to the upsetting decision to go back to the hotel to sleep.

Colton knew I was in pretty rough shape is that I could barely walk without assistance. He joined me in the taxi and made sure I got safely back to our room. Mia continued to the last two meetings for Wisconsin. I am so ever grateful to have her on Team Wisconsin! She is an amazing and strong-willed woman that has become one of my good friends in the migraine community.

Back in my hotel room, I did everything possible to abort my migraine attack. I hated the fact that after attending my 3rd Headache on the Hill, I had no choice but to sit out because of my neurological disease. The main reason why I came to Washington D.C. in the first place was to share how migraine has affected my life. Now all I could do was lie in bed feeling the worst pang of guilt for not fulfilling my obligation as a patient advocate.

It took a good 5 hours before I could safely get out of bed without falling over my own two feet. What most people don’t seem to understand is that having vestibular migraine is often so debilitating that the simple task of walking is almost impossible. How can you function if the world around you won’t stop spinning and your head feels like an anchor, trying to pull your whole body to one side or the other?

I lost a job over my neurological disease from not being able to drive for 18 months. When a person tells me to throw sunglasses on, pop some over-the-counter meds and get on with my day, I take big offense to that. I wish it were that simple! I’d love nothing more than to “pretend” my health isn’t an issue, but my body likes to remind me that it is.

These past two days in Washington D.C had taken a significant toll on both Colton and I. We fought numerous migraine attacks with very little success. The weather had a big hand in how poorly our heads behaved while we traveled. Of course, that was a factor for so many other advocates besides us. They do say misery loves company and there was an overabundance of it on Monday and Tuesday.

At least my evening improved. I was able to attend the dinner hosted by the U.S. Pain Foundation for their ambassadors and other participants that are involved with them. Colton and I had the honor of sitting at the table with 3 of the people from the Out of My Head Documentary. We had a great time learning more about this family, and I can, in all honesty, say they were the perfect fit for that film.

The two days in Washington D.C seemed to fly by as it usually does when I’m in town for Headache on the Hill. It filled my heart to see the 150 advocates representing 40 states. The biggest group of people to date!

What this translates to is that more people are becoming aware that the only way we can make a difference is by sharing our stories with individuals that have the power to change things for us. Having a voice is vital for any type medical condition. Migraine may have taken away some of the most parts of my life away from me, but I feel a sense of vindication each, and every time I overcome an obstacle, my neurological disease puts in my way.

Beautify in Blue for Pain Awareness Month

 

 

As a person living with chronic pain and mom of a teen struggling with his own chronic pain, initiatives just like this one, is very important for raising awareness in each State.

I’m very fortunate to have the support of local businesses during Pain Awareness month. In 2018, I hope to expand even further into parts of Southern Wisconsin.

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.

 

 

 

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!