Not Such A Piece of “Cake”…

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There’s been a lot of buzz in the chronic pain community surrounding the upcoming release of the movie “Cake” starring Jennifer Aniston. I think many of us had hoped that this would be the movie that put our condition on the map, the foray into pop culture that we, as chronic pain patients, so desperately need to help make society at large more keenly aware of our daily struggle. Cast aside by the government, doctors, insurance companies, employers, friends, and family, this film could have sparked a movement towards recognizing, validating, funding, and treating chronic pain. Unfortunately, after thoroughly researching “Cake” as much as possible prior to its release date on Friday, I am concerned that Aniston’s portrayal and the story line will do more harm than good.

The trailers show Aniston as a chronic pain patient named Claire who travels to Mexico to obtain copious amounts of prescription drugs. We then see her furiously popping pills, chasing them with alcohol. We see Claire in a hospital bed, though it is unclear if she landed there as a result of her drug abuse or as a psychiatric admission due to the hallucinations she frequently has featuring her friend who has committed suicide. She is portrayed as altogether unlikable and near the end of the preview, she is asked by her physical therapist “Do you WANT to get better? Really?” Aniston herself says the movie is about “choosing life” though it is unclear what that means at this point.

Problems abound, just from viewing the trailer and associated interviews. Chronic pain patients already face a plethora of stigma from the outside world, ranging from being labeled as drug addicts, “crazy” people, drama queens, and lazy and unreliable. We are consistently told that we are burdens on our families and friends, as well as society as a whole. That is why “Cake” seems to be exactly what we don’t need.

I do not dispute that some chronic pain patients have problems with substance abuse…and they deserve to have their stories told. However, many of us are not addicted to our medications. We take them as directed, under the supervision of a medical professional, in order to improve our quality of life. Many of us heed the warnings on the bottles that caution against mixing our meds with alcohol. However, many of us continue to be labeled as addicts or drug-seekers because of the type and dosage of medication required to lessen our pain. (Notice that I didn’t say “cure”…right now, most chronic pain is merely “managed” with very little hope of a cure.)

Many of us experience anxiety, depression, and other mental health disturbances as a result of being in pain all of the time, as well as constantly being made to defend our condition. Living with an invisible illness sometimes feels like an impossible task and when it is suggested that our pain is “all in our head”, that is a condemnation of our mental health. Some of us developed psychiatric symptoms in response to the emotional roller coaster that is chronic pain. Perhaps you would be anxious as well if you never knew when you were going to wake up in agonizing pain. You might be depressed too if you had to spend countless birthdays and holidays confined to your bedroom or a hospital due to pain and other symptoms beyond your control. Many of us are limited (and even incapacitated) on a regular basis and not just on special occasions. The daily grind of meds, doctors appointments, procedures, diagnoses, and sheer emotional and physical exhaustion can feel like a slow dissent into hell, especially when accompanied by unending hellacious pain. And all of us want to get better. We long to get better. We pray to get better. We fight to get better. We have surgeries, allow doctors to inject us in every part of our bodies, take medications with side effects that are just barely better than what they are intended to treat, endure painful testing, seek out alternative therapies. This is why it is so dangerous to suggest that all we have to do is to want to get better and we will. I have never wanted anything so badly in my life and yet here I am, 11 years later, with no end in sight.

I understand that “Cake” is just a movie and that one movie can only do so much, even in the best of circumstances and if there were a handful of excellent films about chronic pain patients, this plot line wouldn’t bother me so much. But the fact that this movie seems to be being hailed as THE definitive portrayal of chronic pain, the most authentic window into the lives of those of us who battle this every day alarms me. I’m concerned that “Cake” will only serve to further embed the negative stereotypes about chronic pain patients already ingrained in our culture. I hope with all my heart and soul that I am proven wrong.

It’s My Birthday and I’ll Advocate if I Want To!

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As many of you know, I will be turning the big 3-0 on October 27! Among other things, this marks the eleventh year of my battle with chronic migraines. My life certainly did not follow the trajectory I had hoped for. This chronic illness has caused a lot of challenges and more than its fair share of heartache. If you’d like to honor my struggle and work toward finding a cure, please consider making a donation to my personal fundraising page for The Migraine Research Foundation. It can be found at the following web address:

https://www.crowdrise.com/MichelleTracyMRFAmbassador

Your contribution means so much to me. All donations raised go directly to research because 100% of the organization’s operating costs are covered. I urge you to donate to help fund a migraine research grant in hopes that, one day, I will no longer have to suffer with this chronic, disabling pain. That would be the best birthday present of all!

Imagine

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Imagine that you are in excruciating pain and nauseated beyond belief. You are dizzy and tired and weak. The room feels like it is spinning even when you lay perfectly still with your eyes closed. Bright lights assault your pupils, even with your lids closed. You’re throwing up everything you can remember eating since last Tuesday. You’ve already given yourself two injections that hurt like hell and leave bruises on your thighs. You’ve already taken oral steroids which make you feel like you want to jump out of your skin. You’ve already taken painkillers and anti-nausea and anti-anxiety medications. You’ve only gotten out of bed to go to the bathroom. You’ve choked down as much ginger ale as you can in an effort to combat the nausea and stay hydrated. You’ve run out of medicine. You’re away from home and your doctors. You’ve got plans that you don’t want to miss for anything in the world but the doctor says there’s nothing else that can be done because you can’t fax pain medication. It must be hand-delivered with a doctor’s actual signature. The ER won’t help because they’ll just accuse you of drug-seeking and send you on your way. Do you head home on the off-chance that your doctor will prescribe pain meds and that they will work? Or do you stay where you are and hunker down as best you can in hopes that the incredible pain passes soon and you can still participate in your planned activities? It’s a lousy situation, isn’t it? In fact, it seems like a lose-lose situation. Now imagine that you go through this (or at least the very fear of this) every time you travel more than 30 or so miles from your house. Imagine the kind of anxiety this would evoke during every trip, every overnight, every “supposed-to-be-fun-but-migraines-ruin-everything” event. It’s a lousy way to live, if you can even call it living at all. It’s more like existing. I’m tired of merely existing. I want to live, to light up the world like a firecracker. This is why I am so passionate about advocating and fundraising. The constant posts and updates may seem like a nuisance to some but this is my life and the life of my friends. If I don’t raise awareness and money for such a debilitating chronic invisible illness, I can’t ever expect better treatment or a cure. And so I must turn out the light, dim the computer screen, and write posts like this in hopes of reaching at least one person. Making one person understand what I go through or letting one person know that they are not alone. I can’t squint at this screen any longer. I must lay back down and pray that the pain eases sooner rather than later. Now do you get it?

MIGRAINE WARRIOR OF THE WEEK #2: SARA RICHARDSON

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Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Welcome to “WARRIOR WEDNESDAY” and our second “Migraine Warrior of the Week!” As explained in a previous post, each Wednesday a different migraineur will be featured on this blog. Any pictures that are provided, along with their answers to a questionnaire will be posted here, with the hopes of providing alternate perspectives with regards to migraine and other headache disorders. These people battle migraines with determination and bravery and deserve to be celebrated and spotlighted for the way they live their lives despite chronic illness. Some “Warriors” will make mention of their personal efforts to raise migraine awareness: blogs, websites, Facebook pages/groups, books, presentations, etc. I encourage them to do this because I want everyone to have access to as much information as possible. I encourage you to take a moment to peruse whatever they are doing to help and to consider what you, personally, can start doing to make migraines visible and to stop the stigma associated with chronic invisible illness. 

*The content of the following interview does not necessarily represent the views and/or opinions of this blog or its creator. The content of the following interview only represents the views and opinions of the person who filled out and submitted the form. This content is not intended as medical advice and no person should ever start, stop, or change a treatment plan without the express permission and supervision of a trusted and appropriate medical professional. Some treatments that work for one person may not work for another and vice versa. This website encourages its readers to keep their minds open regarding possible treatments and to make sure they discuss all questions and concerns with a trusted and appropriate medical professional. No one pays to be a part of this project, nor do they receive compensation.*

MIGRAINE WARRIOR OF THE WEEK: SARA RICHARDSON

Tell us a little bit about yourself…share as much as you feel comfortable sharing.

What’s your name? Sara Richardson

When is your birthday? Dec. 19, 1971

How old are you? 42

Where do you live? Clear Lake, IA

What is your relationship status? Engaged

Do you have children? No.

At what age did you have your first migraine? 12.

At what age were you diagnosed? 15.

Are your migraines episodic or chronic?

Chronic Migraines, daily headaches, silent migraines, status migraines.

Describe a typical migraine for you. What does it look like/feel like? What symptoms do you experience? What kinds of activities are limited/impossible for you during a migraine attack? 

When I have one of my bad ones coming on, I have pain in the back of my head (at the base of my neck) and then I also begin to get confused.  The worst one that I have ever had, I didn’t know who my mother was.  I also lose some mobility – I get kind of dizzy and need to lay down.  Since I don’t know what I should be doing when I have these, I pretty much can’t do anything – except lie in bed and try to get some rest.

People tend to associate migraines with pain in the head. Other than head pain, what would you say is the number one symptom of your migraines that is the most debilitating?  Confusion.

What are your migraine triggers? 

Nicotine, caffeine, sulfites, nitrates, chocolate, aspartame, cheddar cheese, pork, sometimes dairy, sometimes citrus, heavy cloying smells, sometimes the sun (too bright), fluorescent lighting, weather changes, sometimes yeast……it goes on and on.

What treatments have you tried to manage/control/cure your migraines? Which have been the most and least effective? (Include medications, Botox, trigger point injections, herbs and supplements, surgeries, acupuncture, massage, cranial-sacral therapy, Reiki, physical therapy, exercise and dietary adjustments, and anything else you have tried.)

Medicines, change in diet, surgery (I have a PFO in my heart to block a hole), biofeedback, chiropractor, physical therapy, all sorts of different doctors, and an occipital nerve block.

Most effective – medicines and diet

Least effective – biofeedback and occipital nerve block

How have migraines changed your life and the life of your family and loved ones? 

No one knows if they can count on me to be there for anything because I never know how I am going to be feeling on any day, and if I am there – they also know that I may have to leave or lie down at any point in time.

What emotions do you associate with your migraines?  

Sadness, tiredness, depression, frustration.     

What is the worst thing a person can say or do during a migraine attack? 

Oh, you can’t be in that much pain – just keep going and it will go away.  (My mother uses this one a lot)

Give non-migraine patients some tips on how to be helpful, both during an attack and in everyday life, with regard to migraines, chronic pain, and invisible illness.   

During an attack – help me to get home, and to take my medicine.  

In everyday life – ask if you can come over because you know that they may not be able to get out of the house or tell them if you are going somewhere (i.e. – grocery store) and ask if you can pick anything up for the migraineur.

If you could convey one thing to the general population about migraines, what would it be?  

IT IS NOT JUST A HEADACHE!!!

Do you participate in any advocacy work for migraines? Is there a link (or links) that you would like to share, such as for a blog, Facebook page/group, or website? 

I have some support groups online that are for people with either/both migraine conditions or chronic pain on Facebook – Chronic Migraine Awareness (there is both an open forum – for the public, and a closed one (for people with chronic migraines to vent safely) and Purpose in the Pain Pen Pals – which is a pen pal group for people that have chronic pain to communicate with others through messages and the mail.

Do you battle any other diseases/illnesses/disorders other than migraines? 

Not really 

Is there anything else you would like to share? 

Migraines are very common, however chronic migraine is worse than just about anything.  When someone who has chronic migraine has one of their attacks, they don’t know how long that will last, how bad it will be, or how many people we will disappoint.  When we have a migraine attack, we feel very alone and can get really depressed.  Also, one of the worst things to say to someone with chronic migraine is “Oh, when I get one I take some over-the-counter medicine and it is fine after about an hour.  Have you tried that?”  Of course we have tried that!  That’s one of the very first things that we have tried.  Now, I have medicine that most people who have episodic migraines have to go to the hospital to get (when theirs get too bad for over-the-counter medicines to help) that I give to myself.   

The medicines that I have are injections and they can hurt badly when I have to give myself a shot.  So I end up trying not to take my medicine, because even though I know that it will make me feel better (most of the time) it will hurt almost as much as my head already does.  Or, it may NOT work, and that means that I will have to go to the E.R. Luckily for me though, I go to the E.R. that is affiliated with my G.P. Dr. and have a plan of action of what needs to be done when I have to go there – AND THEY ACTUALLY FOLLOW THAT PLAN!!  There are a lot of migraine patients that when they have to go to the E.R. because their medicines aren’t working for them, they get stuck there for hours with no help, they aren’t believed that they are in as much pain as they really are, they are told that the medicine that the patient says will work – the doctors won’t give them – so the patient ends up getting some medicine and maybe an IV of fluids and then are sent home.  What would you do if you were asked by a doctor, “What is the medication that has worked for you in the past?”  And when you tell them the medicine that worked……your answer given is this, “Oh.  We won’t give you that!  We don’t give that to migraine patients.  You are just a drug seeker, so I won’t give you that.”  And this is what happens to you – even if you do have a plan of action from your doctor (on his/her stationary) that states for you to follow this plan. 

Think about it…………………………STOP THE STIGMA!!!   WE ARE NOT DRUG SEEKERS, WE JUST WANT THE PAIN TO GO AWAY!!!!

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Thanks, Sara! Keep your eyes on this blog daily for new content and every Wednesday to catch the newest “Migraine Warrior of the Week!”

I’ve Always Depended on the “KID”-ness of Strangers-Talking to Children About Chronic Migraine

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A canvas painting that the School Age kids made for me, using my favorite colors

A canvas painting that my students made for me

 

*Names and identifying details have been changed to protect the anonymity of the children mentioned.*

It’s funny: having a chronic invisible illness can be incredibly frustrating, especially since other people seem to have so little compassion for a disease they can’t see. However, children haven’t learned to be skeptical yet. Just the way they believe in the Tooth Fairy without ever seeing an actual person, children believe in chronic invisible illness. I am certainly not equating a chronic invisible illness with a fictitious character; I am merely pointing out that children believe what you tell them, even if they can’t see it.

I’ve been a childcare provider for 19 years and a teacher for 14 years. Being certified as a Preschool Teacher, the majority of my time was spent with children ranging in age from 2.9 years old-5 years old. I was also given the opportunity to run an After-School/Summer Program for children grades K-3. Since I was diagnosed with chronic migraines three years after I began teaching, crafting an age-appropriate explanation of my illness was a priority for me. I have always believed in being as honest with children as possible, carefully choosing my words and content to suit their chronological and emotional maturity. To the youngest children, my migraines were dubbed “tummy headaches” (their words) because they were aware of the pain in my head that co-existed with nausea and vomiting. Reassurance that migraines are not contagious was of the utmost importance because children learn at an early age to associate vomiting with stomach viruses and it simply won’t do to have your students frightened of catching something from you.

The most richly rewarding work, in terms of migraine education, came with my School Age kids. They were able to understand more fully and had a great many questions about migraines. After all, they were acutely aware of my absences and had, unfortunately, seen me in the midst of an attack on more occasions than I care to remember. The first line of business was to create an Emergency Room in our Dramatic Play corner (Dramatic Play is teacher-speak for what many people call “playing pretend” or “fantasy play.”) Giving the children a safe space to act out their interests, fears, concerns, and questions would help me identify what they knew, what they wanted to know, and what reassurances they needed. The children knew I spent a lot of time in the local Emergency Room receiving medication to stop the vomiting and (in theory) to ease the pain. With their help, we created one of the most detailed and expansive Dramatic Play areas I’ve ever been a part of. I made every effort to obtain the materials that the children asked for and used as many “real” items as I could get my hands on, forgoing plastic, pretend tools whenever possible. The children planned, created, and implemented the whole ordeal, from the waiting room, to the treatment rooms, to the operating room.

Armed with faux but realistic-looking prescription pads, they learned the correct names of the medications used to treat me and also that they should never use any medications without the supervision and permission of a doctor and a parent/guardian. (“Does Ondansetron make you dance better?” one of the eight-year-olds quipped when he learned the generic name for Zofran, an anti-nausea drug I use frequently.) An I.V. was created, the children learned how to perform a quick and basic neurologic exam, they even used x-rays and CT scans of my head and sinuses with a light table. I’m not sure if you’ve ever seen 15 kids, ranging in age from 5-9 playing together and cooperating, but it’s a rather illusive sight. However, whenever the ER was “OPEN”, everyone was engaged, including me. One of my favorite interactions was when Mary answered the phone and asked the person on the other line if they could hold. She then called for John, who was a native Spanish-speaker, and asked for his assistance with a bi-lingual patient. He came right over and began speaking into the phone, translating Mary’s words into Spanish for the benefit of the fictitious person on the other end of the line.

Over snack time, we discussed what the kids knew about migraines and what they didn’t know. While they internalized all of the information, the factoid that hit them the hardest and came up the most often was my inability to eat chocolate. “You mean you could eat chocolate and eat chocolate and eat chocolate and then, all of sudden, one day you COULDN’T EAT CHOCOLATE?” Mary asked. “That is the saddest thing I have ever heard,” John lamented, shaking his head. One Christmas, Mark’s mother gave me, among other things, a box of chocolate. Mark shrieked “Jeez, Mom, what are you trying to do, put her in the hospital?!” After a few explanations, things were straightened out and Mark offered to keep the chocolate for me. “I don’t want you to go to the hospital,” he said, popping a chocolate into his mouth and grinning.

I eventually developed a pretty good “curriculum” when it came to explaining my migraines to my students. I explained the head pain by telling them to imagine what it felt like when they bumped their heads on a hard surface. Keeping that pain in mind, I told them to imagine someone kept poking them in the spot on their head that got bumped and that the poking occasionally turned to pushing and squeezing. I explained the nausea and dizziness by telling them to imagine how they felt after spinning on the tire swing right after eating lunch or snack. “It’s hard for me to walk sometimes after that. And things look funny. Does that happen to you?” Joan asked. I said that it did. I told them that there was something else called photophobia or sensitivity to light. I told them to imagine how they felt when they walked out of a movie theater into a very sunny parking lot. I told them that photophobia was like that except, in the case of migraines, your eyes didn’t adjust to the light within a matter of minutes. For me, that feeling could last for days. The kids really didn’t like the sound of the fire alarm we used for fire drills; I used that example to explain phonophobia (sensitivity to sound.) I told them to imagine that every sound was like that fire alarm, whether it was the wind blowing or a clock ticking or a person talking or a door slamming. During a migraine, everything sounded loud and hurt my ears. “How do you LIVE?” Michael asked, shaking his head in disbelief. “You are very brave,” added Jessica, looking at me with wide eyes. It was compelling and bizarre and wonderful how receptive these children were to my struggles, how eager to listen and learn and help they were. Frequently, the adults in my life didn’t even show 0.001% of the interest or compassion that my students exhibited.

My favorite interaction came on a day when I had a Level 9 migraine and was being asked by my Director to stay in the classroom until they could find someone to cover. I had just returned from vomiting in the bathroom for the third time when I noticed that Matthew was standing on the block shelf in front of the window. I sighed. Matthew was nine years old and incredibly mature for his age. He knew the rules and wasn’t inclined to break them. With as much strength as I could muster, I said “Matthew, what are you doing? You KNOW you are not supposed to stand on any shelves. Actually, you’re not supposed to stand on anything but the floor.” I looked pointedly at him, squinting through the bright fluorescent lights overhead and the afternoon sunshine pouring in through the window. He carefully climbed down and explained “I was taping construction paper over this window because it doesn’t have a shade. Remember how the shade broke a few days ago?” I nodded. “Well, since we don’t have a new one yet and I know the light hurts your eyes, I’m taping construction paper over it.” He looked at me, hopeful and proud. I teared up, gave him a hug, and told him he could finish if he stood on a chair instead of the shelf. I told him I’d spot him by standing next to him. “My mom gets migraines,” he whispered to me as he taped the last of the orange construction paper to the windowpane. “Thank you for figuring out a way to fix the window,” I whispered back. If only everyone could think like Matthew.

Migraine Warrior Shirts now on sale! All proceeds go to The 36 Million Migraine Campaign!

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migraine tee

 

In honor of the last few days of Migraine & Headache Awareness Month, I’ve launched a Teespring campaign to benefit my CrowdRise fundraiser for The 36 Million Migraine Campaign. You can purchase a t-shirt, tank top, or hoodie, all in the signature Migraine Awareness color: PURPLE! The front displays the text “MIGRAINE WARRIOR” while the back reads “It’s NOT just a headache!” You can see images below. The campaign ends July 1, so what are you waiting for? Head on over to teespring.com/migrainewarrior and grab one for you and your loved ones! It’s the perfect way to be comfortable, stylish, and charitable all the while raising awareness for an amazing and under-funded cause! Please and thank you!

migraine tee back

 

migraine hoodie migraine tank

“One of the most sincere forms of respect is actually listening to what another has to say.” -Bryant H. McGill

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This is a picture of me giving a presentation to the medical staff at my primary care physician's office.

This is a picture of me giving a presentation to the medical staff at my primary care physician’s office.

 

Today is day 23 of our Migraine and Headache Awareness Month Blog Challenge (#MHAMBC).

Our challenge prompt today is:

Consider this quote by John Lennon, “A dream you dream alone is only a dream. A dream you dream together is reality.” Now write about this in terms of your dreams.

When it comes to dreams, there are many quotes that come to mind, along with the previous one. Quotes like “A dream is a wish your heart makes” (from Disney’s “Cinderella” movie) and “You may say I’m a dreamer, but I’m not the only one” (there’s John Lennon again) and “Now life has killed the dream I dreamed” (from Claude-Michel Schonberg’s “Les Miserables” musical score.) Everyone talks about dreams; everyone has dreams. Dreams can be wonderful, magical, mystical things. Dreams are what we hold onto when all is lost. The difficult part about making your dreams come true is that, sometimes, you need help.

John Lennon states this very clearly…you need to dream together in order for a dream to become a reality. One of my most intense and passionate dreams is for a world where migraines are not only curable, but preventable. A world where migraines are not dismissed because they are an invisible illness. A world where migraines are NEVER again seen as “just a headache.” A world where people take migraines as seriously as any other chronic, debilitating disease. I have met some incredible migraine patients along my journey, as I dream my dream. Migraine Warriors, I call us, because we exude bravery and strength and persistence beyond anyone I’ve ever known. But I’m getting frustrated. I feel like I and all of my Migraine Warrior colleagues are dreaming our own dream, only seen to us, hidden away from the rest of the world because, try as we might, we can’t seem to get the general public to share in our dream.

I understand that it’s difficult to understand what a disease is like when it’s not staring you in the face every second of your life. But I try to imagine what it must be like for people with illnesses, diseases, injuries, and disorders that I don’t have. I try to support them, to help make their lives less difficult, to let them know that I see them and hear them and that I care. I don’t feel as though the Migraine Community is given the same treatment. Profile pictures aren’t changed, ribbons aren’t worn, donations aren’t made. Oh, sure, people with Migraines do these things. Sometimes, we’re lucky enough to have friends and family who will do them, too. But with over 36 million Americans battling Migraines, I fail to see how we continue to slip through the cracks. All of you reading this know someone who is affected by migraines.

So let me send out an SOS, with just one week left in Migraine & Headache Awareness Month: we NEED your help to spread the word. Even if you, personally, don’t suffer from migraines, someone you know does. Is it the 8-year-old boy in your daughter’s class who’s absent every other day because the classroom’s fluorescent lights trigger his migraines? Is it your co-worker that you heard vomiting in the bathroom because someone opted to go a little heavy on the perfume at the office? Is it the mother who doesn’t show up at school events because she can barely lift her head off the pillow? Is it the clerk at the grocery store who wears long sleeves even in the summer to hide the bruises from infiltrated IVs he’s endured at the Emergency Room the night before? Is it your mother, father, sister, brother, wife, husband, aunt, uncle, best friend, girlfriend, boyfriend, partner, boss, colleague? None of these sound familiar? How about this?

I spent last Wednesday in the Emergency Room. I was sent there in an ambulance from my doctor’s office, by my doctor, who, by the way, is not an alarmist. I had the most severe head pain I’d ever had, couldn’t keep down liquids or solids, was so dehydrated that I was on the verge of passing out, had an elevated blood pressure, and alarmingly heart rate. Though this attack was the most intense one in recent memory, it is unfortunately not an anomaly. Migraines are routine for me. I don’t view myself as an ill person. I view myself as a person with an illness. My illness does not define me but that doesn’t mean I will ever stop trying to make my dream of a migraine-free world a reality. So now you, personally, know someone with chronic migraines.

It turns out that I have another dream: a dream to be seen and heard and supported. That dream has to come true first before my dream of a migraine-free world can begin to manifest. Will you help me make my dreams come true?