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.

 

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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!

Starting school, making friends and my hopes for my children’s future

As the school year begins, I have been thinking about my childhood a lot.  I actually have a friend who I have had since I was 5 and a neighbor that became family when I was in 4th grade.  Since then, I have gathered a great group that have made me who I am today.  My “oldest” friends are the ones who know a little piece of me that no one else knows does. They have been there since the beginning.

As the school year begins I think about how my children are starting their “beginning.”  When they go to school they hopefully will find forever friends like I did.  All too soon they will be listening to those friends more than they listen to me and that is terrifying.  Other influences will guide them through school, sports, nights out, big dances, academics and everywhere in between.

These are the people that they will laugh, cry, and grow with.  They will think that the world has ended with a break up and think that missing a party will ruin their lives forever.  They will lie to me, hide things from me, and grow in a blink of an eye.  I just pray that we have raised them well and that their choices in friends have had the same.

They are growing up in a world that is filled with so many more challenges than I ever had to face.  I think we are the first generation to say, it was easier when we grew up.  Social media didn’t run our lives.  Our bullies said it to our faces.  As cruel as it was, it wasn’t the massive amounts of people who can hide behind a screen to say words that crush someone’s soul.

Our football players fought with their fists.  Now they fight with guns.  I wasn’t fearful for my safety.  Columbine shook our lives with the unheard of massacre of many.  Now it’s a part of life that you can’t fly, go to school, the movies, work or a playground without being on high alert.

We didn’t sit at home searching the internet.  We were out riding our bikes and playing endless hours of baseball.  My neighbors watched me and an army of adults were in contact with my parents.  I was held accountable for my actions by everyone.

If I got in trouble at school, I would be sure to hear about it when I came home.  Being a teacher, my student’s parents would blame me for their child’s actions.  They had  little follow through with accountability thus raising an entitled generation with little remorse.

I trusted the teachers and coaches that I spent countless hours with to strengthen and make me a better person.  Are teachers even allowed to do that anymore, or do they just hand them standardized tests?

The only person taking pictures of me was taken by my mom to be put into a family album, not spread on the internet for the world to see.  I grew up with privacy and felt safe.  I have happy, happy memories of my adolescence but remember it not being easy.

My children’s lives will not just be uneasy, it will hands down to hard.  And as a mom I’m so worried about it all.  Right now their tiny hands fit in mine when we cross the street and I pick their play dates.

Some day they will be embarrassed of me and go places that I’m not sure exactly what that they are  doing.  At that point I will rely on the way that we have raised them and their  forever friends that they have chosen.

My babies will always be my babies and they will be thrown into a grown up world well before they will be ready.   As my daughter stands before me in her princess dress I can practically see it as a homecoming dress. I can only hope she wants a beautiful ball gown that makes her glow from the inside out instead of a skimpy dress that she feels appropriate in this overly sexualized world.

As my son runs around in his super hero shirt, I pray he will be safe and this world won’t need saving.  He thinks he can fly and has super strength.   He already has made everyone’s lives better that knows him.  I just hope his ambition and spirit never fades.

I see their innocent smiles and I just want to freeze these moments in time so I never have to see them cry.  I just want to hold them and keep them with me forever.  But I know I can’t do this.  I want and need them to find those forever friends to be something that I can’t.

I need my daughter to understand that although boys are great, every girl needs really good friends.  Men try their best to figure us out, but friends don’t need to.  They just get it!

Their friends will get them through things that really matter when they really matter.  I want them to accumulate all of the wonderful memories that I had and continue to have with my friends that I love so much.

I don’t feel old enough to say that I have friendships almost 30 years but I do.  I’m not sad about my age.  I am proud that I have achieved so much and created so many important relationships during this time.  I’m so happy that I am secure, confident, loved and stable in so many ways.

I no longer have people in my life that are unimportant and as a girl it takes a long time to be happy with yourself and I am.    Life can be so hard yet so wonderful.  I can just pray that my children find people to get through the hard parts of life that I can’t be there for and make the wonderful memories all that sweeter.

May they grow to be happy and healthy.  May they find forever friends who guide them to make good choices and as they guide others.  May they laugh and value people for who they are inside.  May they teach others while they learn so many lessons.   And please God, may they be safe!  As they leave my nest of safety I trust you will watch over them and that the good people of this world will do the same.

Thankfuls to remember and add to


Thank you to everyone who participated in sharing your thankfuls during the month of November.  Here are a few that I hope to look back on during the year to be remind of how much there is to be grateful for!  Please feel free to comment and add on to our list.

“I want to thank you for opening up about your journey.  To find you and to know you can function as a mother, human being and to love life even after 25 years has been so encouraging.  I have not found this before.  But when I have read your blog I feel there is hope as a mother, a nurse and wife.  Thank you in many ways!”

“I’m so happy you made this post!  I think you have the most amazing positive attitude by always seeking out the good things in life despite the pain!  I am exceedingly thankful for the love of my son and two little bunnies who cuddle with me when I need to be touched.  I am thankful that I am able to live near the ocean and travel there to feel the healing power of nature when I need it most.  And I’m thankful for the empowering influence of woman like you on the internet!”

“I am thankful I found your blog!  I think you may be my migraine twin.  As I read your posts, it is like I wrote them.  I am a year older than you but have not had a baby yet, mostly because I am terrified of migraines during pregnancy.  It is encouraging to hear your stories.  Thanks for posting!”

“Thank you for sharing this!   I can relate 100%.   I am thankful for my pain and who I have become because of it.”

“I opened up two gifts this morning, my eyes.  I’m grateful for that.”

“I’m thankful to be alive.  A dear friend is in her final days….each moment spent with her is a reminder of how precious life is, even when living with pain.”

“I am thankful I have great friends that are here to celebrate with me even though we only see each other a few times a year.”

“I am thankful for a full day here and there without a migraine.  I cherish those and makes me more grateful for a pain free day.”

“The roof over my head.  My family and friends that I’m able to advocate for myself and others.”

“I am thankful that I still have my mom alive at 91.  And I am very thankful for my grandchildren.”

“I am thankful for a peaceful room and my medication when I have migraines”

“Bless you for your kind caring heart!”

I am thankful for:

“Loving partner, family friends, warm bed, and migraine awareness spread.”

“My fiancé, my family, good doctors (there are so few).”

“Food!”

“Your blog posts that make me cry”

“Waking up and eating”

“Food, husband, kids, best friend.”

 

“Sow gratitude. Reap. Joy”

What are you thankful 

for?

 

 

 

I am Thankful Despite Migraine

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Happy November and welcome to the month of gratitude

My chronic illness has made me a thankful person in general.  I’m thankful when I’m not in my dark quiet room.  It doesn’t mean that I’m not in pain, but if I’m good enough to be out of bed, I’m thankful.

I’m thankful for many, many, people who love me for just who I am.  I have had to weed out the people who don’t understand but isn’t that life and maturity?  I’m at an age now where my confidence is at its highest.  I know who I am and have surrounded myself with people who truly deserve my time.  I can be knocked down and dragged out by my migraines at any moment so I don’t waste my time with people who don’t make me happier or feel better.

I’m thankful for cuddling with my husband and eating dessert while we watch our favorite TV show.  It’s the small things in life that count and I’m so thankful that I get to spend my life with him.  Waking up to his face allows me to put one foot in front of the other during my worst days and if I can’t walk, he’ll carry me.

I’m thankful for my kids more than words can explain.  I’m thankful for my body that carried those babies and fed them.  I had never been thankful for my body before my two children. Not many girls are in love with themselves due to way too many unrealistic expectations.  With that added to being chronically ill, I never gave myself credit for what it can do.  It’s easy to focus on how much my body restricts me but  I’m now grateful that my body gave me children that motivate me every day.

I’m grateful for my third child, who came to me first, my amazing dog.  She’s so much more than a dog, she gives me love that a human can’t and is one of my strongest therapies. (My dog my nurse my love)

As always I am thankful for my family.  My parents, my in laws, my sister and beyond are my rocks.  You don’t get to pick your family, but if I had the choice, I’d choose them.

The people that I have chosen and am so thankful for are my friends.  They are people who could have walked away from our friendships because of my illness.  Most of my best friends have seen me in a lot of pain, throw up, packed me in ice and have had me cancel plans due to my migraines.  But they love me, dry heaves and all.   I’m thankful to have the most loving, supportive, funny, intelligent and amazing women as my friends. They are great examples to my children on what true friendship means.

Up until last year I had been a stay at home mom and it was the most challenging and incredible experience.  I now have the opportunity to be a full time mom and part time teacher.  I am so thankful for the opportunity to join the work force again but mostly how I was received.  My boss and coworkers instantly became friends and confidants in life.  They are aware of my Migraines and not only are judgement free but are supportive.  They either have Migraines themselves, have a spouse who suffers or see Migraines as more than a headache and how it alters my life.  It is an accepting group and one that wants the best for each other.  My students and their family’s are people I go home each night feeling grateful that I get to be a part of their lives.  I love teaching and being able to go back while keeping my migraines in check during school hours has been a blessing. I wasn’t sure if I’d ever be able to go back to teaching and it fills a void I had while being at home.

I’m grateful for the Migraine community and MyMigraineLife.  My life and confidence, once again, changed when I began my blog.  Fellow sufferers are so powerful in their words and encouragement and I am confident that it has saved and improved lives.  We have laughed and cried together while sharing stories, advocating for foundations and making steps towards greater health.

My list of thankfuls and gratefuls can go on forever.  I am so blessed!  I guess I can complain about migraines, and believe me I do, but being thankful is way more fun and productive.  Migraines are depressing and many people get sucked into the pain hole that seems too deep to come out of.  Remembering my blessings keeps me mentally battling with pain, nausea, aura, weakness, fatigue etc. in a more positive way. The mental battle is incredibly difficult and I’m so thankful I have so much to be thankful for and motivated to fight for.

Thank you for reading, sharing, and commenting on my blog and thoughts.  I’m thankful for you!!!  Without your feedback there would be many days that I would not be able to continue my blog.  It is difficult and uses spoons I may not have.  Your comments, likes and shares motivate me because I know I’m helping you or someone who may stumble across this page.

Please add to my Thankful list.  I will compile the answers and post the list for Thanksgiving. Come back everyday and add something you are thankful.  Showing gratitude, even for the smallest things, gives strength.

What are you Thankful for?

The Real Housewives, Yolanda. Damned if she did, damned if she didn’t

BH real housewives premiere (picture and link taken from Bravotv.com)

I love to watch The Real Housewives.  I watch it for the fact that it is so unreal and allows me to escape the thoughts of my real life to watch these extravagant over dramatized women.  So when I watched the Beverly Hills premiere I was shocked at the real emotional response I had to it.  In the episode, Yolanda broke down some walls to show the world what an invisible illness looks like.  Yolanda has been battling Lyme disease for about three years.  I have to admit that I don’t know much about it and have the impression Yolanda will be teaching a lot this season.  What I do know a lot about is having Migraine which dictates my life.  They seem similar in the stigmatized nature.

To begin with, she should be proud for exposing herself to the vultures who will inevitably pick her apart during the season.  She could have easily quit the show and battled behind closed doors like so many of us do.  Instead, she is really making a difference in the real world by advocating and creating a support system for her inevitable following.  Lyme disease sufferers will be able to see all of the treatments money can buy.   Like my migraine life, Yolanda seems to be a guinea pig with her treatments and searches endlessly to find help and better health.  She says she looks normal yet is so sick which is something I feel every day!

While she is becoming the face of her disease she dared to show her face make up free in Beverly Hills and on TV (GASP!)  Their snickering comments did not surprise me.  Not much these women do shocks me, that’s why I watch it.  But let me explain the poignancy of what Yolanda did through a person with an invisible disease’s perspective……

Lisa V. commented that if she was sick she may have stayed home and that she could have taken 10 seconds to throw some eye make up on.  If she was sick with the flu or sinus infection, in fact, she may have stayed home.  But she has been struggling for years with this.  Being that I have had migraines most of my life, I understand this.  When you are chronically sick, every move takes calculation.  If I do this how will I feel?  Then how will I feel?  And then how will that make me feel?  I guess wrong all the time.  I push myself and get sicker.  I don’t push myself and continue to isolate myself.  Yolanda has moved into a condo because her palatial home was too big for her to reside in and making her doctors closer.  Her Lyme disease has taken control of her life.  While throwing on makeup may seem so simple to some, I can tell you from experience that I have gotten ready for a party and by the time I was done I had to cancel my plans because I used all of my energy.  So maybe she saved her energy to see her friends who she has been unable to see.    But instead of being happy to see Yolanda’s face out of her condo they chose to comment on how she wasn’t wearing makeup.  Honestly, she was damned if she did and damned if she didn’t.  If she chose to show up with perfect make up and a hot dress, they would have commented on how, “She doesn’t look sick!”  So she showed up, “Not looking good at all.”  Guess what?  She’s not good at all.  It’s ok to look that way.  I sometimes get a glance of myself in a mirror and think, “Wow, I should put some make up on.”   Then I think, why?  It is such a gross notion to think, maybe if I look a bit how I feel people will acknowledge that I’m having a bad day.  All of these emotions came pouring out of me while watching Yolanda sit there watching her friends laughing about ridiculously expensive sunglasses.  She excused herself early which is also something I have had to do.  I could see how much effort it took her to be there and her physical response to being at the lunch.

I relate so much to her.  Something I haven’t had to do is watch myself sick and trying to grasp for normalcy while my friends talked behind my back.  Yolanda is going to see a whole lot of nastiness and without a doubt loose friends and hopefully discover what real friendship and love is.  So let me finish by saying, no matter how close or far your relationship is, people deserve to be treated with respect and compassion.  You have no idea what it’s like until you’ve walked in someone else’s Louis Vuitton.   Yolanda is going to show that no matter how much money (and she has a lot!) you can’t buy a cure, health or friends.  She’s going to be REAL!

The power of friends helping Migraine

Today I made plans with my friends to go to our favorite apple orchard. We tried to make it a tradition 4 years ago. At that point we had one child with us. This year there will be 5! These are girls that I have canceled plans with and suffered in front of for years. They have both empathized and sympathized with me throughout the years. I’ve known these girls since middle school and love them. All hail to the friends who love you for who you are!

My Migraine Life

Lately I’ve been thinking about my high school friends a lot. I actually have a friend who I have had since I was 5 and a neighbor that became family when I was in 4th grade. Since then, I have gathered a great group that have made me who I am today. My “oldest” friends are the ones who know a little piece of me that no one else knows because it was the beginning. As the school year begins I think about how my daughter is starting her “beginning.” When she goes to school she hopefully will be finding forever friends like I did. All too soon she will be listening to those friends more than she listens to me and that terrifies me. Other influences will guide her through school, sports, nights out, big dances, academics and everywhere in between. These are the people that she will laugh…

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