life

Migraine at School Program

Through her Eyes of Blue

Migraine at School is a program managed by the Coalition for Headache and Migraine Patients (CHAMP) and the Danielle Byron Henry Migraine Foundation (DBHMF). In partnership with coalition participants, they have gathered the best resources and information for students, parents, and educators to ensure kids with headache diseases are given the best opportunity to excel in school. 

This past month, I had the opportunity to present the Migraine at School program at the NYSAPHERD (New York State Association for Health, Physical Education, Recreation and Dance) Election Day Conference and attended the CTAPHERD (Connecticut Association for Health, Physical Education, Recreation and Dance) annual conference hosting a booth. Raising awareness through Migraine at School is very important to me. Having lived my entire childhood with migraine and now painfully watching my daughter do the same, changes you. I am more energized than ever!

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Life with a migraine warrior is always unknown. We hope for the best, but always prepare for the worst – and we usually land somewhere in the middle. But we can NEVER lose hope or give up on the warrior’s future. Through the darkness, there will always be light… and I know we can make a difference one child at a time.

#alwaysforward #teamlivelovelenna #migraineatschool #migraineawareness

life

Just Had It!

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At what point do you stop trying? I mean I truly know I will never stop trying to fix my little girl’s pain… but my God!!! When does she get a break?!

Is it tonight when she’s already vomited and has to play goalie for her varsity soccer team? Is it her college graduation- if she can even get through college! Is it her wedding day and she vomits in her dress?!

Damn it! It’s hard to stay positive some days and today is that day! I smile as I give her meds… as tears roll down her cheeks … I hope she can’t see the tears I’m holding back! Dear Lord – ENOUGH!

My only hope is tomorrow is a better day… shit can it get worse? … I pray not! Time to start the game and put on a brave face. This too shall pass… and I pray for a sunny, low pain day tomorrow ☀️

#alwaysforward #teamlivelovelenna #migraineawareness #stopthepain💔

life

June is Migraine Awareness Month!!

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June is a month used to highlight migraine disease to help reduce the stigma of this invisible disease. Migraine impacts forty million people in the United States, 10% of children, one billion people across the globe, and is recognized as the #2 cause of disability worldwide.

Check out the MHAM website – National Migraine & Headache Awareness Month.

Many organizations work to raise awareness and promote advocacy…check out these links:

Miles for Migraine

Migraine at School

CHAMP: Coalition for Headache and Migraine Patients

#alwaysforward #teamlivelovelenna #migraineawareness #MHAM

life

I’m just a Mom…

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Being a mom is one of the greatest and toughest jobs in the world. We must be quick on our feet, know how to heal a boo-boo with a kiss, create a meal everyone enjoys, keep the house tidy, and about a million little tasks in between. Forgive my ignorance, but I never received the “how to be a Mom” Handbook when my firstborn popped into this world. The goal for most moms I know is merely to navigate through the day and have all children, fingers, and toes accounted for – well, if that isn’t a challenge, I don’t know what is!

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Add to this daily struggle a child with an invisible disease of chronic daily migraine, and I can tell you there is no perfect day. But, we learn to move through our day a bit differently. Does my heart fall to the floor when I hear those four dreaded words, “Mommy, my head hurts”? Every – Damn – Time! Do I worry she will be held back because of the many absences? Yes! Do I hope one day, she will say, “Mommy, my head does not hurt.”? ABSOLUTELY!

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Living with a child diagnosed with chronic migraine is difficult, but I choose hope. Not every day is easy, and we can feel defeated. As a parent, we must stand up and dust ourselves off. Try to identify and celebrate the victories – fewer Emergency Room visits or a week without an absence. It is understandable to get caught up in the fire drill of daily living, but do not let it consume you. It is ok to be mad or down, but don’t stay there. There are great things ahead, and hope for a pain-free day is our mission.

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Remember to focus on the positive and use resources to help your child and the family. #alwaysforward #teamlivelovelenna #migraineawareness #invisibledisease #neveralone

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life

Difficult Roads…

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I keep a sign in my kitchen, and it simply states: Difficult Roads often lead to Beautiful Destinations. Well, I sure as hell hope it’s true! I try to remind myself, we will get through this, and our girl will get better. I work very hard to keep positive as I know, deep in my heart, there is more to God’s plan than letting her suffering continue. However, day in and day out, our story has not changed much. 

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Today is just another example of her struggle. A short series of texts come in as I am loading the washing machine… “Mom come downstairs…bring nausea medicine…..Mom….Mom…..I feel sick again”. My heart drops as quickly as my laundry falls to the floor. Grabbing her medication and water, I race to the bathroom to find her sitting quietly on the bathroom floor. I asked the dreaded question, “Do you think you can make it to school today?” Sadly, I already knew the answer.

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Today may not be a good day, but maybe tomorrow or the next one will be better. As I have reminded myself before, it is okay to be sad and rest my heart, but I mustn’t stay in the darkest. Stand back up and shake off the sadness and lift my head up. We are not done yet, and we will be as relentless as the migraine.

#alwaysforward #invisibledisease #migraine #migraineawareness #teamlivelovelenna

life

Does your child or teen have Chronic Migraine?

Through her Eyes of Blue

If your child or teen has been diagnosed with Chronic Migraine, we have a parent education and support series starting this January. The goal is to provide support and community for parents through this challenging time. The program will provide the parents with a collaborative environment to share personal stories, learn from other parents and explore new strategies to support their children. You are invited to join psychologist Michelle Clementi, Ph.D. and social worker Kelli Sloan, MSW, who will be facilitating the groups.

We are looking forward to meeting you and traveling this journey together.

#alwaysforward #teamlivelovelenna #migraineadvocacy #migraineawareness #milesformigraine

life

Migraine at School

Through her Eyes of Blue

Migraine at School is a program managed by the Coalition for Headache and Migraine Patients (CHAMP) and the Danielle Byron Henry Migraine Foundation (DBHMF). In partnership with coalition participants, they have gathered the best resources and information for students, parents, and educators to ensure kids with headache diseases are given the best opportunity to excel in school.

MIGRAINE AT SCHOOL

Check out their webpage to learn about resources for students, parents, and educators: https://www.migraineatschool.org

#teamlivelovelenna #migraineatschool #migraineawareness #invisibledisease

life

The Full Moon Effect

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For years, a full moon always meant the crazies were out – LOL, but I never did run into any. These days the full moon brings me new concerns… when will the migraine pain hit? Although I do not have proof the full moon is a trigger, tell that to my daughter’s head. Anyone who has met me knows I love Halloween and a spooky story or two, but no story is as scary as a migraine attack brought on by the full moon. I have tried putting cat’s eye in the windowsill – yes, you can laugh, but if there was the slightest chance to stop my daughter’s pain, I’m in. Sadly, the cat’s eye nor any other voodoo-like trick has worked to control her pain.

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So what do we do? We search, ask questions, search more, ask more questions. However, we never give up. I know there is no magic bullet or single treatment to stop the migraine pain, and you might find it odd, but I still see hope. The hope to believe the cure or successful treatment is out there just waiting to be found. Time does not stand still, but neither do our warriors. They may take a break or even break down, but they will never give in. The strength to get through a day of pain is monumental and should be recognized. Stay strong, warriors – you got this!

#teamlivelovelenna #alwaysforward #fullmoon #strength

life

Virtual Event: How to Treat Migraine without Medication

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Are you looking for alternate options to treat your child’s migraine pain? Please join us this Saturday at 11:00 am EST, where Dr. Michelle Tutmaher and Elizabeth Rosengrant, MSN, CPNP from Children’s Healthcare of Atlanta, discuss non-pharmaceutical ways to reduce pain associated with migraine and other headaches conditions.

Please register for this free virtual event at: https://www.milesformigraine.org/how-to-treat-migraine-without-medicine/

#alwaysforward #teamlivelovelenna #milesformigraine #migraineawareness

life

Do you believe me?

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Migraine Attacks are unpredictable. I can understand why non-believers and a strong stigma surround this monster. My daughter goes to school, practice, her soccer game only to get struck down during the night and unable to even lift her head in the morning. Updating her teachers and coaches, I often wonder do they even believe me? Or do they think I am just an overprotective mom not pushing her daughter through a headache? This cringe-worthy feeling unleashes so many emotions, and I begin to justify every action and symptom to plead my case – WHY DO I DO THIS!?

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The truth is, my daughter, is ill and deserves to be recognized for the perseverance she displays to get through even one day – something many have the luxury to take for granted. Now, I am not criticizing those who never felt the soul-crushing pain of a migraine attack – I am grateful for those who can not imagine this hell! However, how do you explain well enough to create understanding? Break the Stigma? Create Credibility of Invisible Diseases? Build Support of our Warriors? We advocate! Use our voices to stand up and fight for those afflicted and unable or not comfortable in telling their story.

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The more we speak up and do not give up, the more compassion will grow – I truly believe! For the caregivers, remember you must take care of yourself too. This disease affects an entire family, and acknowledge your emotions and allow yourself to feel. I know as a mom of my warrior, getting caught up in putting out fires is exhausting. Allow yourself to breathe and grieve the loss of your expectations of a normal childhood. But gain your strength from the battles you have won and the war we will win! Stand tall – you got this!

#alwaysforward #donotrelent #teamlivelovelenna #throughhereyesofblue #migraineawareness #migraine warriors

life

Our Journey

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As the mom of a migraine warrior, I sometimes get overwhelmed at the moment. But today, I sat for a moment and looked back at the journey. My God, look how far we have come! My daughter’s migraine journey started over nine years ago, and we have made such strides forward. Now do not get me wrong – we still have a great distance to travel. However, today, I see the triumphs – and they are many!

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  If I can say two words about our journey, it would be Always Forward. Some days are unbearable…some days tears…some days angry words, but we always get through. We gather ourselves, shake it off, and move forward – always. Just know you are not alone, and you are fighting a great fight! You can do this…Just keep moving forward…tomorrow can be a better day.

#teamlivelovelenna #alwaysforward #migraineawareness #migraineadvocacy

life

We Wait…

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In life, we are always waiting for something. We wait to hear the good, the bad, and the expected. For the migraine warrior, the waiting is different. I am pain-free today, but when will the migraine start? I have a migraine. Will I need to take my rescue medication? Is today an emergency room day? When will the pain stop? Even in the calm of no pain, the looming question is always lurking…

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But instead of waiting for the good, the bad, or the pain, I believe enjoying the moment, especially the pain-free one, is a better strategy. The pain will come and hopefully go quickly, but living in the hope of a better day will undoubtedly bring more light. Sometimes it may be hard to see the progress when we are running through life putting out fires. I do hope when you have a moment to breathe and reflect, your triumphs will shine the brightest. Keep up the fight – you are doing amazing!

#momentintime #alwaysfoward #throughhereyesofblue #migraine #migraineawareness #milesformigraine

life

So Who Takes my Complaint?

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Only two days left of school, and our warrior is in bed due to a severe migraine and nausea – Damn it! I thought she would be able to enjoy the last few low-stress days and say her goodbyes as we head into the summer. So who do I complain to? Mother nature for the excessive heat, God for passing this horrible disease to my daughter. Who? No one, and I’m angry. I can not fix her pain nor lie to her and say the pain will go away, as I do not have that crystal ball.

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So I get mad, I get sad, I get back up and remind myself – this too shall pass. Easy right? Not always… Anyone who suffers from migraine or has a loved one afflicted, we know we mustn’t give up or in, but we can take a minute to be authentic. I hate looking into her eyes and seeing the pain, followed by the mood swings and anger. She, too, has no one to voice her complaints, except me. And if I must take the preverbal hit to help her rise back up – then here I stand!

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I know it is not easy to be the brunt of someone’s frustration, but use this as an opportunity to develop a safe place for the warrior. After a bit of time has passed, I often receive a hug or quick text stating, “I’m sorry, mommy.” And I get it – pain creates a beast no one wants to be, and no one wants to see. Hang in there, warriors and our unsung heroes. You are strong and loved – please never forget it!

#migraine #migraineawareness #amercianmigrainefoundation #milesformigraine #alwaysforward #throughhereyesofblue

life

One Step Closer

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A year ago, if you told me I would be starting to dip my toe in the migraine advocacy pool – I would have said I don’t even know where to start. Well, I am not sure how it started, but I am excited to say it has! I just completed the first phase of the Emerging Advocacy Program with the American Migraine Foundation and I am beyond excited to make an impact.

#alwaysforward #throughhereyesofblue #migraine #migrainedisease #migraineattack #teamlivelovelenna

life

So Close…But Yet so Far

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Not sure if anyone out there is superstitious …don’t step on a crack …don’t wash your socks on a winning streak … hold your breath by a cemetery … you get the idea. Well, I certainly have additions to that list, but the whole reason behind the superstition is not to jinx your good fortune. You would think I would have learned over the years, but I seem to jinx myself, or truthfully my daughter, time and again.

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You see, I get very excited when we have milestones in my daughter’s migraine journey, and we have had some amazing ones, such as no Emergency room trips in over 18 months. Recently, I made the mistake of saying out loud, “wow, we haven’t missed school in a while! And the fix is in! Today, it broke our record and reminded me to keep my mouth shut. Even her rescue medicine was not enough. So in a dark room, under her covers is where she will stay.

So today, things will have to wait..no school, no lacrosse, no fun, as we hope for no more pain. However, tomorrow will be a fantastic day, as the new day brings us new hope for a good day. Moving past a bad day is not easy, but it is necessary to keep moving forward in this journey. Keep your head up and know you are a warrior, you are a champion!

#alwaysforward #migraine #migraineawareness #throughhereyesofblue #hope

Health and Wellness

An Ordinary Day

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Words such as ordinary or normal are used as a primary degree of measure, but what is the reference value? My normal and your normal have vast differences, thus making this description full of gray. On the one hand, an ordinary day for the migraine warrior could be foggy, painful, or just unpleasant, and the non-sufferer just had nothing exceptional occur.

When navigating one’s world with a migraine diagnosis, maybe creating your levels of “normal” is necessary. How I see it is, validating the feelings of the warrior is essential. Even if you never had a migraine, I suspect you know someone who has, be aware of your words. Migraine disease is an invisible disease, and rarely does one “look sick.” But believe me, they are!

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I once learned a very simple lesson that I wish to share. Take a sheet of paper, crumple it up, and then try to flatten it out to remove all the creases – IMPOSSIBLE. The sheet of paper will never return to its pristine condition, regardless of what you try. Feelings are like that paper, and words can hurt and never be erased. Raising awareness of migraine disease and carefully choosing our words and actions will create a supportive and compassionate culture for migraine warriors. And if we can make just one warrior’s day a bit brighter, I’m in!

#alwaysforward #throughhereyesofblue #migraine #migraineadvocacy #invisibledisease

Check out this link for more information: https://americanmigrainefoundation.org/living-with-migraine/

Uncategorized

Praying for a D?!

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When I grew up, our parents expected nothing less than B’s on our report cards, or grounding was sure to be the punishment. My siblings were in good fortune, as my older brother and I were notorious for getting a C or two, so the focus was usually on us. Yup, you’re welcome! In the migraine warrior’s life, good grades are not impossible but are more of a challenge.

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Our migraine warrior struggles with her grades. Sadly, some days she is too ill to attend class, and then for the next day or two, she lives in a brain fog of forgetfulness, pain, frustration, and fatigue – also called the postdrome phase (click this link to learn more about the timeline of a migraine:https://americanmigrainefoundation.org/resource-library/timeline-migraine-attack/). Our girl has severe migraine disease, which is defined as over 15 migraine days per month, and reports some pain level each day. 

These interruptions in her classwork have wreaked havoc on her grades and her ability to stay off academic probation to play sports. This spring was no different, and one F would be the deciding factor if she could play lacrosse. We checked in with the teacher and were assured all assignments had been received and were awaiting correction and uploading into the grade book – WRONG! On Sunday afternoon, an email of a missing assignment is received in the eleventh hour – all bets are off. Panic sets in, and the teacher enters a zero in the grade book, dropping her grade even further.

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Now, we hold our daughter accountable for her grades, but planning is our strongest defense against the unknowns in the life of a migraine warrior. A functional day is never guaranteed, and this unexpected event resulted in other work being pushed off and getting to bed very late. The assignment was completed, and her grade is now a D, but at what cost? More Zomig, a migraine attack, we shall wait to see… Migraine Disease awareness is so important. Planning is our best defense for a successful day, and I choose to focus my frustration on making tomorrow a better day.

#migraine #migrainewarrior #throughhereyesofblue #alwaysforward #migraineeducation

health

The Light Switch

Through her Eyes of Blue

Living a life with migraine is full of pain and uncertainty, which sadly creates much anxiety. As one of five children and the only one with migraine disease, the understanding of my daily struggle was never fully appreciated. I would never fault anyone for their lack of knowledge of what a migraine warrior must endure. Hell, I am grateful for anyone who has never felt the pain of migraine. However, this creates a world of misunderstanding, loneliness, and hurt for the person with migraine. Even as I write this post, tears slowly roll down my cheek, as I am transported back to when I felt so hopeless and alone.

aluminum electrical bulb component

If one grew up with siblings like mine, our daily goal was to tease or torment each other just enough to embarrass or bully, but stop before the wrath of our dad was unleashed. However, rarely did we get the math correct, and my father would be scolding one or all by day’s end. My siblings gave me the nickname “The Light Switch.” I would snap without warning when the teasing became too much, much like the flip of a light switch. I know, aren’t they cleaver – NOT! Although it was better than my other name, Amazia Moo. I earned it during a game of Trivial Pursuit when we learned amazia means the lack of breasts…I’m sure you all can figure out who was still in a training bra. Anyway, I digress.

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As I became accustomed to my new name, I learned how to out-smart my siblings. The trick was to “snap” at the joking onset, and I was left alone. Boy, was I smiling on the inside! “The Light Switch” title will always be my reminder of life with relentless pain and other neurologic symptoms which consumed every minute of every day – a LIVING HELL. However, my journey has made me who I am today, and I like myself: strong, determined, and relentless as migraine disease. Keep fighting your fight; even if you do not feel like you are – know you are a Champion!

#migrainedisease #alwaysforward #teamlivelovelenna