Shades for Migraine World Solidarity Day, June 21st

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Tomorrow is Migraine Solidarity Day, June 21st.

“Shades For Migraine is a campaign to promote migraine awareness and create a viral buzz for a disease that affects over 1 billion people worldwide….

To participate, people will wear their sunglasses where they normally wouldn’t on Migraine Solidarity Day, June 21, even indoors when possible!  They prove it by posting photos on social media with the hashtag  #ShadesForMigraine. “

My Migraine Life is a proud participating blog and I hope you participate this year!

Watch for advocates outside the Today Show!

Here are some examples:

On left: I am wearing my Axon Optics indoor glasses.  I was working in the office with a skylight and needed protection from the computer glare and sunlight.  Check out my affiliate link to learn more

On right: I am wearing my Theraspecs indoor glasses and headed to a wedding.

For me, anytime is a good time to wear my #shadesformigraine

Any one can participate.  Last year, my best and favorite support jumped in on the fun.  She is missed every second of My Migraine Life.  Her support was priceless!

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Why I’ve joined up with Miles for Migraine and Increased My Advocacy

I recently got a flashback of one of  my first posts ever.  It was super exciting to see how far I’ve come and how I’m meeting my goals from  4 years ago.  This post explains how I want to help children and be part of a charity that raises funds for migraine and lowers stigma.

I’m proud to say I’ve found it and I AM saying “Wow, look how far we’ve come.”  If you see me post about Miles for Migraine it’s because I feel strongly that it is making a financial and community difference.

After the 2 races we  participated in, Team My Migraine Life raised $2,192.91.

I was asked to give my patient perspective at both races.  I also donated 9 inches of my hair between this time!  We  raised funds, raised awareness and lowered stigma for migraine.  My children were at both events to hear me speak and are not only learning about their mom at each event but how it affects so many others!  We will be the ones to make change and we will be the ones to pave the way for a less painful stigmatized future.  I’m so proud!

Check out a post I wrote in the first week ever of blogging…..

Miles for Migraine Cincinnati Results 2018 race/walk

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This weekend, I was part of Miles for Migraine race in Cincinnati.  It was a beautiful and warm day filled with love, support and a group of people fighting stigma and raising money for Migraine and headache disorders.

 

 

The race raised $3,550

Team My Migraine Life raised $567.37.  Thank you to all those who donated.

We were the top team!!! I’m so proud of us 🙂

The day began with fighting a 3 day migraine that I had traveled with but had huge inspiration to make it to the event.  When I got there, I was surrounded with some migraine advocate powerhouses.
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Michelle Tracy, Migraine Warrior, represented the INVisible project with her smiling face and sharing her inspiring personal stories. She also spoke to the group about being a patient advocate and how we can all be one ourselves.

Not only is Michelle an amazing and strong advocate but she was brave enough to sing the National Anthem to begin our race.  She has a strong voice as a patient and as a singer!

Katie Golden, GoldenGraine, brought sparkle to all of our days.  She is the senior contributing writer to the INVisble Project and a fierce advocate.  I can’t possibly list all of the things she is doing for the migraine and pain community but check her out and follow along.  She was kind enough to run the race with my daughter and then touch up her sparkles…..because there is no such thing as too much glitter!

IMG_3555 I once again gave my patient perspective.  I was shaky and read my speech because I could not guarantee that I could string my words together and make sense.  I felt so proud that I stood up to the pain and was able to put a face on what migraine disease really looks like.

We also heard from Dr. Andrew Hershey, the chair and director of the division of neurology at Cincinnati Children’s. He is a professor of pediatrics and neurology.

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After that, we walked.  At the Miles for Migraine events you are welcome to run and be a fierce competitor, walk and enjoy your team or stay at the tents to mingle or relax.  It’s all about building community, moving how you can and raising funds so we all can live a healthier life.

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The best part of the day was being with the ones that I love.  Spending a morning for a good cause with good people is always a great way start to the day.  I woke up in pain, shaky, sick and not sure if I could make it.  Thanks to effective medication, endorphins and a bit of luck, I was able to enjoy the day.  I walked with some of our best friends, my husband and our mini me’s.  It was a day that we  plan on turning into a tradition.

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Wondering about the Brain Hat? The Brain Hat Society is for people with migraine, their caregivers, friends and family while recognizing  their heroic efforts.  If you raise $50 you can be a member.  Purple is for migraine sufferers and pink is for the caregivers and loved ones.

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Thank you to all that supported and continue to fight.  We are fighting not just for ourselves but for future generations.

IMG_3582Also, a BIG thank you to the sponsors and these hard working ladies!  Shirley Kessel is the Miles for Migraine president while Katie MacDonald oversees operations.  They work tirelessly on bringing these events to more cities and raising funds to benefit so many.

Check to see if Miles for Migraine is coming to your city and how you can participate virtually!

 

 

 

 

 

To the Dog Who Helped Raise My Kids and Watched My Illness Grow

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I have this picture in my room.  One day, my daughter asked me, “Mom, is that the day you married Lucia?”  My answer was, “No baby, Lucia and I were already together forever.”  You see, my dog and I began it all….

I bought my dog to celebrate my first job out of college.  I had been lonely from leaving my college town and thrust into real life and big responsibilities.  It was love at first sight.  After I brought her to the vet, I was told she would most likely die from Parvo.  That fluffy little ball of fur proved them all wrong.

My Golden Retriever was my life.  She was part of my engagement, watched me get ready for my wedding and moved to an apartment and 2 different homes over time.  She was our first child.

When our first human child arrived, she didn’t feel pushed out.  My sweet dog thought our baby was hers.  She had paced the floors with me and pregnancy insomnia.  She sat with me during round-the-clock feedings.  She was there for me as I had meltdowns about being over tired, over worked, underfed and overwhelmed.  It was years of blurry joy and hustle and she was there through it all.

 

As a stay at home mom with a husband who traveled, Lucia was my constant companion during some lonely times.  I had days where I spoke to no adults.  I spoke to my babies and my dog.  Conversations can be had without words and my dog was always my biggest cheerleader and best friend.  Her tail, ears and eyes spoke volumes to me.

 

There was no better big sister for my humans than Lucia.  She was patient while they played vet and poked her in the eyes.  She was smart when she learned how to stand under the high chair to avoid flying sippy cups while reaping the benefits of fall out food.  She was even ok with squeezing hugs and the occasional ear tasting.  She was sensitive to yelling and was always a reminder for us to use our talking voices.

She was the emotional equalizer.  As I walked into the house with 5 bags on my arms, screaming children chasing behind me from the car and everyday chaos we entered a home of love.  Our Golden Retriever always came running with a stuffed animal in her mouth, a wagging tail, and an attitude that said ”Leave it at the door.”  We all changed when we saw her sweet face.

 

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Do you know those moments before Tick or Treating and everyone is melting down?  I  always had someone to laugh with

 

She put my children to bed every night without fail.  She’d lay on the carpet as I read to one and get up and move to the next room as I did the same.  There was never a night she missed tucking them in.

 

As my oldest became school aged, my dog started picking her up from school.  Everyday when my alarm went off, she went running for the door.  She knew it was time to pick up her girl and go for a car ride.

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Over the years, my dog had 2 knee surgeries, many teeth pulled, growths cut off and more.  Even as she was recovering, she still took care of me.  (link)

As she grew, so did my struggle with migraine.  She became a therapy and emotional dog to me that no one will ever fully understand.  She got to a point that she sensed my pain spikes.  She learned how to comfort me and held my hand very early on and never let go.  Her eyes were always on me.  No matter how many humans we added to our family, I was her number one.

 

Feeling like number one when I give my full self to my family was priceless.  I don’t even put myself first, yet she always did.  She followed me from room to room.  My shadow and my protector.

Over the years we spent countless hours in a cold dark room with my chronic migraine.  There were many nights where I collapsed to the bathroom floor and she slept pressed up against me.  She spent hours unmoving from my bed while I thrashed in pain.  I’d be covered in ice and wiggle my fingers to feel her little kisses on my tips.  She’d do anything to make me feel better and she did.

 

In her last days, our only concern was making sure she wasn’t suffering and that we showed her all the love that she provided for us over the years.  I had a vet once tell me, “Goldens will wag their tails and eat until 3 days after they die just to please their owners.”  On her last day, she did just that.  We bought her lots of treats and threw her an early 13th birthday.  She wagged her tail and cuddled us while we knew it was time for her to go.  She knew and her eyes told us so.

Saying goodbye was, without a doubt, the most gut-wrenching moments of my life.  I feel so blessed that it was in her best interest, we didn’t allow her to suffer, she went without panic and pain.  As I laid with her, I felt God take my best friend, my four-legged soul mate, my first child and migraine warrior.

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The days after, I saw her everywhere.  I heard her everywhere.  I felt her everywhere.  My son was sick and I was trapped in my house and grieved over every hair, nose smeared window and inch of my house.  My house was no longer the home I was at ease in.

She went to God on May 8th.  On May 11th my turtle of 20 years passed away.  He has lived in my family room of every home I’ve had since I was a teenager.  My pets passing away in 3 days was extreme! The numbers 8 and 11 are hugely relevant.  I was born on 8/11.  My favorite numbers have always been 8 and 11 along with being my numbers in sports and more.  It was not a coincidence that these were the dates they went to the rainbow bridge.

A week exactly from the day we said goodbye to Lucia my baby boy graduated preschool.  I thought it would feel totally different, but it just felt like a tremendous loss.  I’ve dedicated my life to my children and animals  and it just felt like everyone was leaving me.   It was as if my pets were saying, “We started this family and raised your babies and now it’s time”.  It felt like an end of an era and one I was not ready to say goodbye to.

I’ve heard the phrases:

  • Our pets don’t live long enough
  • When it rains it pours
  • You’ll never get over her but someday it will hurt less

I’ve been told to get another dog not to replace my four-legged soul mate, but to find another love.

I’ve been told that another dog can learn to be a therapy or emotional support dog too.

Here’s my answer to all of this:

This next dog will have a distinct difference from Lucia.

  • My family belonged to Lucia. We started it all!  I was her number one.  Our children were hers.
    • The next dog will belong to them. They will see her as their childhood dog when I will forever know Lucia as the dog who gave my babies joy and me sanity.
  • Lucia watched my migraine become chronic and she evolved as my therapy and emotional dog.
    • The next dog will hopefully see me get better. Her focus won’t solely be on me.  She is coming into an already made family and connections will be totally different.
  • There will never be another being on this earth that can complete me.  Right now I feel this painful hole in my body that physically hurts with every breathe.
    •  With Lucia went a piece of me that I will miss forever.  Yes, I will love another dog, but I know I won’t get that piece back.  She will be missed each day! I know it will get easier but everyone has been honest with me in saying, it will never go away.

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Patient Perspective on My Migraine Life

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I was asked to tell my patient perspective  on having migraine at the Miles for Migraine inaugural walk/run in Cleveland.  In the speech, I named my support system “My Migraine Lifers.” I feel honored to be a voice for all of us who live our Migraine Lives and all of those who fight by our sides.

Thank you Katie.  And thank you Miles for Migraine for putting on this event.  It feels so good to be among such migraine fighters.  Migraines are typically fought in the dark and in the quiet. Today we are stepping out and putting a face on what we often fight behind closed doors and I’m so excited to be here.

I think it’s amazing how all of our stories are so different, yet we have some things in common:

I’ve thrown up 3 times on my way to work with a migraine and had my boss tell me he “had a headache too.”

I know I’m not the only one who fights this stigma.

I’ve lost friendships and missed events both big and small.

I know I’m not the only one who hopes for better understanding.

I’ve spent endless money on medications, products, therapies and anything that promised the smallest amount of relief.

I know I’m not the only one looking for lifestyle changes and better treatment options.

I’ve been judged and by no one more than myself.  The guilt, sadness, anxiety, “what ifs” add up for us all.

But This is why we are here today. To break down the stigma, to help others and to say thank you to all those who support us.

I’ve had Migraines since I was 5.  I don’t have many stages of my life that I don’t recall how they affected me.  Both of my grandmothers and my mom suffered from Migraine.  We had an idea of what it may be but had no idea of the difficult journey that lay ahead.

After years of searching for why I felt so awful, Dr. Reed was the first doctor to make me feel like I wasn’t crazy.  She didn’t promise a cure, because there isn’t one.  But she promised to help and join my fight and her whole office did.

After all of these years, I have learned to be thankful every day.  I have gained gratitude and there is nothing I am more grateful for than “My Migraine Lifers.”

I write a blog named “My Migraine Life.”  I tell my stories, share information and bring together a community of My Migraine Lifers.  With more than 36 Million people suffering from Migraine, everyone knows someone in their life who suffers.

My life feels like it is dictated by my migraines but I live a happy, blessed life because of all of these people.

It’s the group I have gathered over all of these years and the ones who suffer and fight right beside me.  It’s my babies, my husband, my parents, my sister and nieces, my friends, my coworkers, my doctors and the migraine community.  They are here with me today and if you look around they are here with you.

My advocacy hasn’t decreased my migraines or made them better.  I would love to tell you something different.  But what it has done, is brought a clearer picture of how if effects my life, how it affects others and how we can work together to be happier and healthier.

We all struggle, we all need understanding, and we all need support.

Thank you all for being here today on this really cold morning.

It’s not just about me or my fellow migraine warriors.

It’s about ALL of us.

I appreciate you all for taking steps in YOUR Migraine Life and supporting Miles for Migraine.

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With Dr. Reed, a neurologist who fought by my side for many years.  She was instrumental in getting Miles for Migraine to Cleveland and was asked to speak as a doctor’s perspective.

 

Cleveland Migraine Walk/Run Results and Accomplishments 2018 with Miles for Migraine

 

This weekend was Miles for Migraine inaugural walk/run in Cleveland.  It was a great success due to all of the generous donations!!!  Thank you for all of the support!

The donations

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At time of post…

Total donations: $3,831

My Migraine Life team: $1,519

Due to everyone’s support, my team was the top fundraisers and I was  acknowledged as the top person to raise money for this event.  Once again….THANK YOU!!!

Announcements, doctor and patient perspectives

 

 

Before the race, Katie MacDonald, our coordinator, gave a speech reminding us all why we were there.

Dr. Reed followed her opening announcements by expressing how she is motivated as a neurologist and fellow runner.  She was instrumental in bringing Miles for Migraine to Cleveland and sets the example of how a doctor can make a difference inside the office and takes running strides towards making a difference outside of it.  I have seen first hand what she can do as a doctor.  She was my neurologist for close to 10 years and her office saw me through a wedding, 2 children, many difficult years of stressful work and beyond.  It was a special day to be honored next to someone who has fought along side me all those years.

Then I gave my patient perspective.  I was asked to speak because of the influence I have had with My Migraine Life.  I started writing my blog less than 4 years ago and could not have dreamed where it would take me.  It feels so good to be helping people all over the world through my blog while helping people in my community and making connections in person.  It felt great to thank all those who have inspired me and made my quality of life possible.  Without them helping me, I could not help others.

What makes you go the extra mile? The walk that turned into a run for some. #MoretoMigraine

 

 

A board was set up to say why “you go the extra mile.”  The response turned into beautiful family pictures and amazing encouragement.

We were all set to walk the race and the younger members of our group decided to run.  Thank you to my sister and mom who then unexpectedly ran also.  I hung out with my friends and their stroller and took a lovely walk through the chilly yet scenic woods.

My Migraine Life team!!!

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Regardless if we walked or ran, we were all winners!  My Migraine life team was a true example of how I am surrounded by love and support.  My boss and her family (husband who fights post head trauma migraine), my childhood friend (who manages sports induced and trigger oriented migraine) and her adorable family, my mom (migraine fighter for herself and me), sister, nieces, and brother in law (who don’t have migraine but certainly have stepped up to help me in every aspect of my life), my husband (who has never wavered in his fight for me) and my babies (the reason I won’t allow defeat).

I’m  not sure, but I think we also had the biggest and cutest team also!!!!

Thank you again to all of those who supported Miles for Migraine.  Thank you to my fellow walkers/runners.  Without you, I wouldn’t be able to work, live, survive or smile without you.  You are all great lights in my life!

To those of you who donated and shared on social media….thank you!  A lot of you I don’t see often.  I know you wonder, pray, and support me from afar as I do you.  I could feel the love pouring in whether you were there or not.  It was a cold day in Cleveland but the sun shone on the event with warmth and light due to you all!

Miles for Migraine Walk in Cleveland 2018

There is less than a week left before Miles for Migraine comes to Cleveland.  This fundraiser is an amazing opportunity to bring awareness to Migraine and headache disorders along with raising funds to help improve the lives of those who sufferer and their families.

Interested in donating?  Go here

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Available to walk April 21, 2018?  Join us at South Mastick Park at 9:00am. Register here

THANK YOU