Calling all Migraine Warriors!

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Do you own one of these purple “Migraine Warrior” shirts? They were originally offered in three styles: t-shirt, hoodie, and tank (not pictured.) I’m going to make a collage using pictures of folks in their purple “Migraine Warrior” shirts for #Migraine & #Headache #Awareness Month (#MHAM.) If you’d like to be included, please e-mail me a picture of yourself wearing your purple “Migraine Warrior” shirt at the following address:

themigrainewarrior@gmail.com.

I’d love to get as many people as possible to participate. If you don’t have a purple “Migraine Warrior” shirt but would like one, please comment below. If there is enough interest, I will re-open the campaign. A portion of the proceeds will go to The American Headache and Migraine Association (#AHMA.) Thanks in advance for your help! 💜💜💜

The Migraine World Summit: Medical Cannibis

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Access the Migraine World Summit

The Migraine World Summit is going on as we speak and it’s an opportunity for you to access some of the best and brightest minds in the field of migraine and headache disorders without even having to get out of bed. I’m furiously taking notes which I will make available here on my blog soon. In the meantime, I’d like to urge you to take advantage of this opportunity by clicking on the link above and watching as many of the interviews as possible. You can also purchase an all-access pass that allows you to access all of the interviews and additional information at any time, even after the summit has concluded. With this option, you can watch the interviews at your leisure, stopping and starting as you please, without feeling pressed for time.

In my previous post, I wrote briefly about Dr. Robert Cowan’s lecture on migraine causes and triggers as well as the increasing role of technology in the diagnosis and treatment of migraine. It’s a must-see interview for anyone living with migraine.

Today, I’d like to suggest that you watch the interview with Dr. Eric Baron from the Cleveland Clinic Neurological Institute. He gives a fascinating history of medical cannibis (marijuana) as well as a summary of how it’s being used today for a variety of conditions, including migraine and other headache disorders. He gives an in-depth look at the political climate that affects the use of marijuana both medically and recreationally as well as discussing the challenges faced by doctors, patients, and researchers seeking more information about medical cannibis in the United States. (Though 23 states, as well as Washington D.C. have voted to legalize medical cannibis, it is still illegal at the federal level.) I’ll post a longer summary once I’ve organized my notes but I suggest you watch this interview yourself as well. Perhaps you may even opt to share this with your migraine/headache specialist. I hope you enjoy Dr. Baron’s presentation as much as I did. Feel free to leave comments on this post or to e-mail me at themigrainewarrior@gmail.com with any further comments or questions. Wishing you a low-pain day and hoping that you are as well as possible.

The Migraine World Summit

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The Migraine World Summit is taking place right now! Take this opportunity to Learn From 32 World Leading Migraine Experts, Doctors & Specialists. The Migraine World Summit is Free Online From April 15- 20, 2016.

There are a wide variety of topics being discussed by some of the top migraine experts in the world and you don’t even have to leave your bedroom to attend! Simply head over to https://www.migraineworldsummit.com/ and start watching the speakers at your own convenience. So far, my favorite interview has been with Dr. Robert Cowan from Stanford University. He discusses migraine triggers and causes (there’s a difference between the two!) as well as the increasing role that technology plays in diagnosing and treating migraine.

If you missed an interview, don’t worry. Each video is available for free for 24 hours after it’s initial posting. Want access to all of the videos and information for longer than 24 hours? Click the following link to purchase an All-Access Pass to The Migraine World Summit:

https://www.migraineworldsummit.com/idevaffiliate/idevaffiliate.php?id=104

If You Only Read One Post, Read This One

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chelledadmigrainewarrior

Some folks have told me that my advocacy work doesn’t make a difference. That it either falls on deaf ears or only appeals to other people who have illnesses similar to my own. That raising awareness without raising money is a waste of time. And I think some of us start to believe that and it wears us down. It defeats us. It makes us alternately angry and sad. Why are we doing all of this, anyway? Are simply creating noise while silently losing friends? I have a story that suggests otherwise.

My father (pictured with me above) is not a migraine sufferer. His brother and sister both have migraines, although not the kind of migraines that would prepare him for having a daughter like me. He has watched me thrash with pain, stagger with dizziness, wretch with nausea, cower with photophobia, and cry with despair. He has also watched me fight, advocate, educate, and succeed. For over a decade, my parents have both been enmeshed in every parent’s worst nightmare: watching their child spend their days in unimaginable pain and discomfort while being told by a variety of specialists that there was nothing else that could be done. As a patient, I know the kind of depression and helplessness that comes along with such a life but I cannot begin to fathom how it must be to watch your child suffer, day in and day out, with no cure in sight. That’s what makes this story all the more brilliant.

My father is a professor at the local university, as well as a world-renowned scholar, prolific writer, and accomplished musician. When he asked me where his purple “Migraine Warrior” shirt was, I didn’t think much of it. Because my Dad’s wardrobe consists almost exclusively of t-shirts and jeans, it wasn’t out of the ordinary for him to don that shirt, which he bought last summer as part of a migraine awareness fundraiser I had organized. It was only later that I learned that his choice to wear that particular shirt on that particular day was, in fact, quite pre-meditated.

It was the first day of classes at the university and my Dad had taken to giving his typical introductory spiel. My Dad openly discusses his bipolar disorder and obsessive-compulsive disorder with his students on the first day of classes, opening up a dialogue where students can feel comfortable coming to him if they are dealing with something difficult. He makes mention of the university’s disability services and encourages students to make use of them and to not be embarrassed or ashamed to ask for or accept help. He tells my story of chronic migraines and my own foray into disability services. He makes sure that his students understand that he is an empathetic and compassionate person, one that will not discount them due to circumstances beyond their control. I think perhaps this partially comes as a response to the professor who suggested that I drop out of college because I’d never be able to hold down a job with my chronic migraines. I’m thankful that my parents, disability services, and another one of my professors made me understand that that professor was the one who was wrong. Because of our struggles and our willingness to be open about our journey, my father has been able to open the door of communication to countless college students who may be facing something similar. I hope that they hear his voice loud and clear rather than other people in their lives who may be telling them it’s time to give up.

On a smaller (but no less important) scale, our advocacy work helps individuals. I’ve had chronic migraines ever since I began dating my boyfriend over 8 years ago. He’s been supportive and compassionate and empathetic beyond all of my wildest dreams and he came to me with a story the other day that made my heart swell. Apparently, he encountered a distraught young woman at work in the break room. When asked if she was okay, she replied “I’m having a migraine.” My boyfriend immediately crossed the room to turn off the television. On his way back, he shut off the lights. He asked “Do you want a Dr. Pepper or something? My girlfriend gets migraines and I know that caffeine helps her.” She smiled and thanked him, telling him she’d already drank a Coke with her migraine medication. I can only imagine how this young woman must have felt. So few people know what to do in a situation like this and even fewer have the courage to do it. In that moment, I can almost guarantee that he made her current situation much better with the simple elimination of light and sound, the offer to help if he could, and the acknowledgment that he saw her pain and understood that it was real because someone he loves suffers from that pain, too.

The people around us listen. The people around us see. And some of those people take those words and images out into the world and make it a better place. As a result, there is more understanding and less stigma. Telling my story over and over and over again may not raise millions of dollars. But if we all tell our stories over and over and over again? We have the potential to change millions of lives.

Only 21 hours left to order your “Migraine Warrior” shirts!

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migraine teemigraine tee back


Tick tock, folks. Time is running out. There are just 21 hours left to order your purple “Migraine Warrior” shirts! On the front, it reads “Migraine Warrior” in white text. On the back, it reads “It’s NOT just a headache!” in white text. There are tank tops, t-shirts, and hoodies available in the following sizes:

Tank top: Small through 2XL

T-shirt: Small through 5XL

Hooded sweatshirt: Small through 5XL.

International shipping *IS* available.

I already own a t-shirt and a hooded sweatshirt from when I ran this same fundraiser last year. I can attest to the fact that they are comfortable and durable.

These shirts are great conversation starters and an excellent way to raise awareness without even opening your mouth! Basically, you’re raising money for an excellent cause, you’re raising awareness for migraines, you’re feeling comfortable, and you’re looking stylish. It’s a win/win!

If you can afford it, consider buying one for a friend who can’t afford to purchase his/her own shirt right now. These also make great gifts. They are perfect for migraineurs and caregivers alike!

Follow the link below (or copy and paste it into your browser) to order your shirt (or shirts) today!

Thanks to everyone who has purchased shirts and spread the word about this fundraiser!

OITNB: Occipital is the New Block

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Occipital nerve blocks. Somehow, I got 11 years into my migraine journey without ever having had any. It was basically my new migraine specialist’s first suggestion (after putting me on Propranolol as a daily preventative medication.) I have had needles in most areas of my body. However, I was still anxious about this new treatment. But I puffed up my chest and told myself that, if I could handle 31 injections during each round of Botox, I could handle this. My Dad and I trekked the 2.5 hours to my migraine specialist’s office and, all told, my appointment probably lasted a bit longer than an hour. My specialist is very thorough and so is the resident that works with him so I never leave with any unanswered questions. However, the portion of the appointment that was taken up by the occipital nerve block injections (of which there were 10) lasted less than 5 minutes. Basically, I sat in a chair in front of the exam table and laid my head down with my hair flipped up to expose the base of my skull and my neck. The doc wiped each injection site with an alcohol towelette and said “A little scratch and then a little sting.” It made me smile that he said “A little scratch” when he was injecting me with a needle but it also sounded much more soothing than “a little poke” or “a little prick”. He informed me that he was using the smallest possible needle gauge. He told me that he was injecting a numbing agent called bupivicaine. The shots essentially went as follows “Ouch! Sting, sting, sting, NUMB.” The pain was over with quickly not much worse than Botox. In the interest of being totally honest, I will say that the ones that hurt the most were the two he gave me in my forehead, right above my nose. It’s the place that would crinkle when I frown had I not had six rounds of Botox. Those two HURT but it was nothing I couldn’t stand and, if these blocks help me, I will definitely do them again without all of the agonizing anxiety beforehand. The bupivicaine feels very strange; it’s like the novacaine they give you at the dentist but it’s in your face. It wasn’t scary, just odd, and it wore off before the night was over. I haven’t experienced any real side effects except for some tenderness at the injection sites (which is different from the tenderness you get with Botox though I’m not sure I can put into words how) and very slight bruising on my forehead. (I suppose I might have bruising on the back of my neck but, well, I can’t see the back of my neck!) All told, I am hopeful that this could be a new addition to my migraine toolbox!

One last bit here: There is only one day left to buy your purple “Migraine Warrior” shirts. Proceeds benefit The 36 Million Migraine Campaign. Please order one today, for yourself or a friend!

You can find them here: http://teespring.com/migrainewarrior

Chronically in Love: The V-Day Edition

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Photo credit: Jeanette Rotondi

Photo credit: Jeannette Rotondi

All the way back to sixth grade, I can remember being obsessed with Valentine’s Day…flowers, candy, cards, jewelry. I loved all the grand gestures and hullabaloo that surrounded the holiday. My Dad used to send me singing telegrams with carnations and my mom always made sure I got a cute card and a much-desired present. As a child whose parents listened exclusively to the Oldies station on the radio, I grew up on love songs like “Something” by The Beatles, “All I Have To Do Is Dream” by The Everly Brothers, and “Unchained Melody” by The Righteous Brothers. The one that stuck with me the most was a song called “Never My Love” by The Association and I immediately decided that it was the greatest love song of all time and would be played (possibly more than once) at my wedding. When you look at some of the lyrics, it’s kind of hard to argue with my logic:

“You ask me if there’ll come a time
When I grow tired of you
Never my love
Never my love
You wonder if this heart of mine
Will lose its desire for you
Never my love
Never my love
What makes you think love will end
When you know that my whole life depends
On you (on you)
Never my love
Never my love
You say you fear I’ll change my mind
And I won’t require you
Never my love
Never my love
How can you think love will end
When I’ve asked you to spend your whole life
With me (with me, with me)…”
~Never My Love by The Association
I mean, come on! There will “NEVER” be a time when you won’t “REQUIRE” me? Heavy stuff. But I always liked the idea of someone depending on me, requiring my presence in their life. That’s how I felt about those I loved.
When I began experiencing chronic migraines at the age of 19, things changed a little bit. Having someone depend on me or require me felt like a lot. I had been told by people who didn’t really understand my illness that I was actually the opposite of dependable. Many friends and loved ones decided that they did, in fact, no longer require me. My illness and all that came with it was too much. I kind of lost hope in the idea that I would find someone who was willing to put up with everything that I bring to the table.
Fast-forward a couple of years: My migraines were still chronic and currently thought to be the result of a sinus blockage and I was preparing to have surgery in a few weeks. I didn’t feel well, didn’t go out much, and wasn’t particularly interested in going out on the cold night in early December. But it was Eoin’s birthday and he was one of my best friends, so I had to go. Parties were not something I regularly attended during that period of my life. When my best friend and I walked in the door, we noticed three older guys standing in the corner in suits. Of course, that made us curious so we hung around their general area until they began to talk to us. It turned out that one of them was Eoin’s older brother and the other two were his friends. One of them kept asking me if I wanted a drink (alcoholic) and I kept firmly but politely turning him down. His persistence began to wear on me so finally I told him “Look. I get really bad migraines. Drinking makes them worse and alcohol also interacts with some of my medications. So I am not drinking.” He looked startled but replied “I’m sorry, I didn’t know.” I smiled ruefully. “I know. It’s not like I wear a scarlet “M” on my forehead. I don’t really like talking about. In fact, I’m kind of done talking about it now.” He nodded and I turned to talk to my friend. Later that night, another one of the trio of suited gentleman offered to get me some ice water. He was kind and handsome and mysterious (so much so that he wouldn’t tell me his name, being referred to simply as “The Dukes”.) I had no idea what would become of him or the hours we had spent talking or the innocent kiss we had shared before I left. Except I kind of did. I had this feeling. Roughly a month and a half later, we went on our first date.
Fast-forward 8 years: “The Dukes” (who I found out is actually legally named “Ian”) is still my boyfriend and best friend. He is the guy who brought me ice water that first night. He helped me on with my coat. He didn’t know what he was getting himself into. But he has stuck beside me through every difficult thing I have had to endure. From letting me choose his deodorant because my migraines are triggered by certain smells to laying on a stretcher in the hallway of the Emergency Room with me for 17 hours, he has never shied away from the good or the bad. Which brings me to my point, which I think is best made by a quote from one of my favorite television programs, The Middle:
“Valentine’s Day is a high-pressure holiday. Luckily, when you plan on loving someone for the rest of your life, you have plenty of other days to get it right.”
That’s the thing: Valentine’s Day is just a day. It’s a day that Ian and I aren’t even spending together this year because of the vast and snowy wasteland that is Massachusetts this winter. But I can still recall the time I walked into his kitchen while he was still at work and all of my favorite foods were lined up on the counter, none of them containing any migraine triggers. (Later, he told me “Have you any idea how hard it is to find a frozen pizza without aged cheeses? I was in the frozen foods aisle for half an hour!” I laughed and laughed.) Or the time we were in Vermont and I had to stay in the hotel room all day with a severe migraine and he brought crackers, Coke, Ginger Ale, and Lorna Doone’s to the room so I’d have something to take my meds with and caffeine to help with the migraine. I was understandably upset because our annual Burlington trip is my favorite of the year and we had been planning to go to my favorite store (The Sox Market) and it was our last day there and I was in so much pain and so frustrated that I sobbed into his shoulder “I’m so sorry. I love you. I’m not good enough for you.” He gently took my head and said to me “You are exactly right for me and I am exactly right for you,” and he tucked me in, turned off the lights, and kissed me as he headed out to meet our traveling companions for the afternoon. He called to check how I was doing and said that, if I was feeling up to it, I could pick the restaurant we went to for dinner. Then, when we got back to the room, he produced a bag from my favorite store, the store I hadn’t gotten to go to, that was full of warm, fuzzy, and fun socks. I could go on, but this post is long enough. My point is, love does not exist solely within a day, nor does it necessarily manifest itself in store-bought cards and flowers and chocolates and diamonds. Love can be warm, fuzzy socks and a migraine-safe frozen pizza.