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!

Thankful list 2017 On My Migraine Life

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Thank you to those who showed gratitude in November on My Migraine Life.  I am so thankful to have a community of supporters and those I can support throughout the year.  We may suffer a lot but we appreciate the things in life that make us better.

Happy Thanksgiving to you all!  May it be filled with health, gratitude, and many blessings!

Here are some comments you made:

  1. “Thankful for friends, family, a safe place to live and ability to pay my bills.
  2. For this group.
  3. Thankful for modern medicine
  4. Laughter
  5. I live for the pain-free moments of laughter with family and friends!!
  6. When pain level is low enough to be functional
  7. I am thankful that I am able to still keep a job that I love and be a good mommy to my kids
  8. Thankful for my family, my jobs, and my animals!
  9. I am so thankful for my amazing husband who allows me to tag out when I need to lay down and take care of myself. And for his willingness to work past exhaustion to take care of me and our family when I cannot “pull my weight” during times of pain.
  10. I’m thankful for my amazing and supportive husband. I’m also thankful for the awesome support system I have at work! Without my husband and my work family my life would be awful.
  11. I’m thankful for my amazing husband and children who support me every single day and for my beautiful family of migraine warriors!
  12. I am thankful for your blog! I do not like having “this thing” in common with anyone….but am thankful that you can put into words what I often can’t…or won’t.
  13. I am thankful to live in a city of doctors and options.
  14. I am thankful for a long list of relatives that share in our unfortunate disease, but not all at such a high level.
  15. I am thankful for my husband, who from day one has understood me, and what the future holds with my health, and has never flinched, never questioned, never judged.
  16. I am thankful for my children, good lord are they a blessing, God’s greatest gift to me by far.
  17. I am thankful for my energetic children, who give me a reason to muddle through my painful fog, even though sometimes I’d rather hide in bed.
  18. I want to thank My Migraine Life for your post on being a mom with a migraine.  You are right it takes a village to raise a kid.  That’s why God gave us the ability to ask for help.   But reading that other moms felt like I did was wonderful.  So thank you and I pray that your message touches other people like it did me.
  19. I feel blessed in many ways and could write a very long list, but the big one I will share is that I am thankful my migraines and headaches are not as frequent as so many others who have to deal with them so regularly.  Because I know how painful and debilitating from life they are, I am amazed at the strength that you and so many others have in not only “getting through the day” but kicking ass doing it.
  20. I woke up today, I’m thankful for that.
  21. I’m thankful to be finding community here, too. I’ve struggled with migraines for years, tried a variety of meds and elimination diets without very good results. It’s so helpful to find understanding, optimistic peers! I’m looking into a headache hat and a new pair of glasses this month, thanks to you!
  22. I am thankful for so many things I can’t name them all, so I am very thankful & although I may not have the best of everything I am blessed
  23. Thank you for this post.
  24. I am thankful for my wonderful husband who puts up with a house that’s not always clean, listens to me when I’m frustrated with doctors or treatments that don’t work, and doesn’t care that I don’t cook (lol).
  25. I’m thankful for my two grown children and 6 beautiful grandchildren.
  26. I’m thankful that I have two best buddy dogs that snuggle when I need it and keep me entertained when I’m stuck in my house for days on end.
  27. I’m thankful I woke up today even though the moment I woke up my headache knocked on my brain.
  28. I’m thankful for communities like this one that is a place of kindness and support.
  29. I’m thankful for today despite the challenges.
  30. I’m thankful for people like you that make me feel less alone in this struggle with chronic headaches.
  31. Like others have already said – I’m thankful for finding your blog, and this post especially.
  32. Love reading this blog and hearing how inspiring you are. “

Thank you to all who chose to take time out of your day to give thanks and share with My Migraine Life community.  I am inspired by all your kind words and strive to make this blog the community, support system, and positive place it is.  Migraines are painful, being a mom is overwhelming and life is chaotic.  May we all find strength and take each day at a time hopefully towards health and happiness!

Happy Thanksgiving, my friends!!!

Throwback Thursday to Indians World Series 

I’m so excited for game #1 of the playoffs tonight! Here is my experience from last year.  ⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️⚾️✨Sports can teach so many lessons and provide memories that last a lifetime! ✨


https://mymigrainelife.wordpress.com/2016/11/05/thankful-thursday-indians-vs-cubs-world-series-2016/

Monday Munchies and Meals: Pumpkin Muffins

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I love to cook!  I don’t always follow the directions, I use what I have, I avoid trigger ingredients and I go from there.  It has become part of my family’s lives.  My children love to measure, get out ingredients, mix, taste and see the results of their hard work.    And I love all the math, science,  reading, social, fine motor and even cultural lessons it provides.

Although cooking deliciousness is my goal, the process sometimes seems like  so much!  It’s a commitment to shop, prep, cook and clean up.  Often times it takes way longer than I’d like and uses way more energy than I have which is frustrating.

So I’ve decided to start a Monday Munchies and Meals series.  I hope to post a recipe each week in hopes of inspiring you to make something healthy and feel good about, being a  a snack or meal.  Why am I posting on Tuesday then?  Because life happens and I’ve been in bed with a killer migraine for the last 36 hours.  I wrote this post on Saturday after making  it last Monday and I couldn’t even open a computer to press “publish” for 2 days.

It isn’t always possible to cook everyday with having Migraines and living a busy life.  One recipe a week will be enough to share, make and encourage you to do the same.  So whether I post on Monday or Friday, you can make it whenever it fits your schedule and health also.  It’s meant to inspire, if you have an ok day, try it!  If you don’t, try again another day. 

If you like the recipe, please make it and share it with me.  I’d love to see your results and adaptions to Monday’s  munchie or meal of the week!!!  Post on facebook, twitter and Instagram and comment on the post to inspire others.

I do not follow a strict diet.  I avoid trigger foods but have not cut groups out of my life (gluten etc.).  I try to find recipes that are clean, real ingredients, that are anti-inflammatory and nutrient dense.  I am not a nutritionist and fully admit I eat way too much sugar.  I hope to share recipes that make me feel better and taste good.  If you have one you’d like me to try, please email me at mymigrainelife@gmail.com

This month I’m focusing on pumpkin.  Everyone loves pumpkin in the Fall and the benefits of it are great!

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Here’s the recipe I followed:

http://www.makingthymeforhealth.com/healthy-flourless-pumpkin-muffins/#_a5y_p=4349482

We ate these for breakfast, in lunches and as an after school snack.  Easy and great for grab and go.

Pumpkin Muffins

 

 

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?