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.

Free Comic Book Day 2018

This will be my 4th year reporting from Free Comic Book Day. It was my kids love for reading that first introduced me to this annual event that is celebrated every first Saturday in May. If you’ve never been to FCBD now would be a great time to do so.

To learn all about Free Comic Book Day, check out the latest article I wrote on




HealthyWomen.Org Article: Tips for Preparing for the Holidays When You’re Chronically Ill gave me the opportunity to share how I prepare for the Holidays while managing my chronic illnesses: rheumatoid arthritis, fibromyalgia, and chronic migraine.

To read my latest article, click on the link provided below.

Healthline Article: When Migraine Runs in the Family

I was given the opportunity to write an article for about my family’s journey with an uncommon type of migraine.

To read my article, click on the link provided below:


Jogging Journal: Day 6

Tuesday, December 12th at 4:31 A.M. – I didn’t need an alarm to wake me from my deep slumber. The town’s snow plows did an excellent job of that! Obviously, my morning work-out was going to consist of using a snow shovel before I did anything else.

I dressed in 3 layers of clothing AGAIN then made my way to the front of my house where I proceeded to shovel the porch, 5 steps and the LONG sidewalk leading to Main Street.

I love being a homeowner, but my body isn’t quite on board with all the work I’ve had to put into making my house look presentable on the outside.

After 30 minutes of clearing the 3-4 inches of snow so that I could make it off my own property, I decided to at least walk a mile. My body wasn’t bothering at that point and walking would help me to clear my mind for writing later that day.

All and all, my morning was rather productive. I got a good upper body work-out and no joint pain that whole day. That my friends, is what I would call a small victory!

Until next time….

Jogging Journal: Day 5

Monday, December 11th at 5:05 A.M: We got about 2 inches of snow last night. That meant shoveling snow off my sidewalk before heading out for my early morning jog.

At least my body wasn’t giving me any type of grief.

It took me about 30 minutes to clear off the main street side walk plus my own and salt over the concrete. There was no way I would be jogging today! Whatever energy I had in me, went into clearing those sidewalks.

Before I started walking, I checked for ice. If there is one thing I wanted to make sure to avoid, it was slipping on the pavement. If there were too many spots with ice, I would call it a day and try again tomorrow.

After testing out the traction on my shoes I forged ahead and walked the entire mile on my route. Very slowly I might add. Again, it was all about safety first.

I know that the upcoming months will be questionable for training outside. I might even have to change the times I head out for jogging if the conditions are more favorable later in the day. Got to love wintertime in Wisconsin!

Jogging Journal: Day 4

Thursday, December 7th at 4:30 A.M: Why I woke up this early, without an alarm, is beyond me! I didn’t even fall asleep until a little after midnight. Again, I am not a morning person, so this is very unusual for me.

As I dressed, my body made it known there would be some difficulties with putting on my shoes and tying them. My rheumatoid arthritis decided to make an unexpected appearance today. Just when I thought I had it under control with a higher dosage of methotrexate, the joints in my fingers refused to cooperate.

I wasn’t having it! With everything in me, I finished getting dressed and headed out to do not only one mile, but two. There was no jogging. That would have keep me bed bound the very second, I walked back through the door.

The key is knowing your body’s limitations in that moment.

I knew it would be somewhat impossible to walk, but if I could at pace myself and try to go further than the days before, I’d feel like I accomplished something great. When you live with multiple chronic illnesses, that is a big deal!

Until next time……..

Jogging Journal: Day 3

4:30A.M. on Wednesday December, 6th- I automatically woke up, thinking it was 5:15 and proceeded to get dressed. Of course, when I had dawned the 3 layers of clothing, that’s when I looked at my cell realizing it wasn’t even 5 o’clock yet!

So, I just went with it and headed outside in the 20° temps with my face mask covering everything, but my eyes.  5 minutes into my jog I came to a complete standstill. Both of my shin’s started to bother me. I haven’t felt pain in that area since I last played soccer in high school (back in 1994 to be exact!)

I didn’t want to stop, but knew jogging would only make things much worse. I forged ahead at a slow, comfortable pace. At least I would be able to do my full distance with less pain as possible. Something is better than nothing!

The moment I stepped foot in my door, I grabbed 2 ice packs and applied them to my shin’s knowing I had to take better care of them or there’d be no Day 4 of training for this gal.



Jogging Journal: Day 2

5:15 A.M. on Tuesday, December 5, 2017 – I get out of bed and my legs already feel like jello from the jogging I did the day before. The strong winds roaring outside are enough to let me know I was going to have to wear even more layers than I had anticipated.

It hadn’t even been 5 minutes yet and here I was struggling against my rheumatoid arthritis. I guess it decided it was time to rear its ugly head again. My fingers refused to cooperate as I fumbled with my clothes for at least 10 minutes to finally get fully dressed. Tying my shoes was a total nightmare!

I did a few stretches before my body made it known the only other exercising I’d be doing this morning was walking. My limbs should have loosened up the moment I walked one block, but they didn’t. They just progressively became stiffer. I could turn back and go home, but I didn’t want to. I needed to at least try to go a few more blocks and then maybe I would be okay with the distance I had already walked.

I passed the first of two gas stations with overwhelming soreness in my hips and knees. It wasn’t just my rheumatoid arthritis giving me grief. My fibromyalgia decided to join in and make the rest of my journey home an uncomfortable one.

The wind was extremely strong and frigid. One would have thought it’d be enough to make anyone want to stay inside. Not me! I was determined to complete one mile today. And that’s exactly what I did.

And what’s even better, is that during me trying to keep my mind off the throbbing pain radiating off each major joint on my body, I came up with an idea for a new book! Who would have thought that my brain could concoct a concept for my next novel and give me titles for at least 11 chapters?

That gave me more of a reason to walk as fast as I possibly could, so I could jump on my laptop and write every, little single detail down before it slips away from me.

No matter what motivation I had for today, it turned out to not be such a bad morning after all.

Till tomorrow!