Breaking the Cycle

There's a state that migraineurs know that's an in-between of being functional and non-functional, where you're alive, but not completely there. You're able to complete small tasks and make small talk, but still are forgetful and can't fully focus. It's almost like there's a haze of brain fog surrounding you and no matter how much you rest and sleep and do everything that you're supposed to do, you don't get better.

For the past couple of weeks, I've been in between this half-functional state and full-blown migraine episodes. My to-do lists became an ever-growing mountain of tasks that no matter how hard I tried I couldn't do. My meds weren't fully stopping the migraines, and when they did stop, I'm not sure I actually recovered. I ended up having to make a choice this past week; do I get hospitalized or do I get an infusion and do the DHE 45 protocol of 3 shots a day for 5 days to break the cycle? It was a choice that I haven't had to make in almost two years. The last time I went to an ER for a migraine was the beginning of my freshman year in fall of 2015, and a couple months after that I had to do the DHE 45 protocol so I wouldn't be hospitalized. But this time was different. This time was terrifying because it reminded me of what I had gone through in high school. I was reminded of how helpless I actually was in dealing with my illness. I can be doing everything "right" and taking care of myself, but to a certain extent, that doesn't matter. I have a debilitating illness that affects my life and no matter what happens or how healthy I've been, episodes like this are a harsh reminder that there will always be times in my life where I can't control what my body is doing.

I ultimately decided to go in for the infusion and continue the DHE protocol at home. Infusions are never easy, and this was no exception. For the first time in my life, I was alone when I received the treatment. My parents were at home across the country, waiting to hear if I was being hospitalized and whether they should just get on a plane to be with me anyways. I always had someone be there with me to talk to me when the IV was placed, to reassure me when the pain of the medication hit my veins, telling me that everything would be okay and alright, even if it didn't feel like it now. I realized that it had been two years since I had an IV placed, my last one was in February of 2016 for my blood clot. When I got back from the infusion, I slept for 6 1/2 hours straight, not knowing if I would have to come back in a day for a nerve block if the infusion didn't work, and if that didn't work I would definitely have to be hospitalized. Luckily, I didn't. I opted for the DHE 45 protocol instead, because I'd much rather be giving myself shots than staying in the hospital for multiple days.

It's gotten easier to give myself the DHE shots over the years, but it's a special type of hell to have to do them 3 times a day. DHE is nothing short of a miracle drug for me, it has been the only abortive that has broken cycles for me. But it leaves bruises, the only physical element of my illness. It leaves tender spots so that by the end of the 5 days, I may be clear, from migraines but my legs are left sore and bruised. In a way, they are my battle scars. They are the only things that I have to prove that what I go through is real to the outside world, the only physical reminder. Yet bruises fade, just as these episodes do. At the end of the day, I will be okay. At least, that's what I've been telling myself. I'm finally clear but I am still very much dealing with the aftermath of this, both emotionally and physically. Throughout this whole ordeal I've been praying that I'll be able to access the new CRGP antibody drugs once they're released (hopefully in May and more on that in another post), so that maybe one day, I could have a healthy life. It's hard because I once again realized that I "looked" functional. I was taking a test when I got a full blown migraine and my proctor struggled to figure out what was wrong with me because I looked fine but was having trouble putting sentences together. I looked fine, but I wasn't.  And that's just the thing, I'm fine until I'm not. But those cycles of not being okay have been some of the most terrifying experiences of my life. When I am in those cycles, there is no foreseeable end. It is all pain, anxiety, and fear. When I'm out of these cycles, I can have some more clarity about what's going on, but it doesn't make the heightened emotions that I feel much better. These pangs of loneliness, shame, and fear come back when I am feeling okay, a lingering reminder of the times that I am not doing well.

I've been in love with songs that make feel like everything is okay when it feels like everything isn't. The song "Happiness is not a Place" by the Wind and the Wave really highlighted that for me. (Here's a link to my Uplifting Spotify playlist in case any of you were interested) The chorus goes;
"And don't you happiness is not a placeIt's the road you takeAnd who you choose to walk it withAnd the grass ain't always greener on the other sideIt's okayBut I wish it was easy like it soundsJust believe one dayAnd your walls start coming downTrust me things are gonna be alright"

 To me, it's a reminder of how our struggle does not define us, but it shapes our lives. That no matter how difficult, frustrating, or painful things get, things will turn out okay. I say this for all of you as much as I do for myself. As for myself, I'm going to breathe during these next couple of weeks. I am grateful for the resilience of my body and my support systems. I'm going to breathe and start chipping away at my mountainous to-do list. Most importantly, I'm not going to give into those feelings that have been wearing down on me. I'm going to be looking towards the light at the end of the tunnel, because trust me, things are going to be alright. 

Why Am I A Patient Advocate?

As I'm preparing for my second Headache on the Hill, I've been reflecting on how I got to the place where I am. Being a patient advocate is something that I never saw myself doing, especially when my health was at its worst. At the end of the day, being a patient advocate is about sharing your story. The more that I told my story to people in my life, and then to people that I met, the more I realized that my story and my experiences impact other people and how they think about migraine and chronic illness.

Most people know someone who has some type of chronic illness. In 2012, about half of all adults in the US, around 117 million people had one or more chronic health conditions, with one in four adults having two or more chronic health conditions, according to the CDC. Chronic illnesses affect everyone in some way, but our society still struggles to talk frankly about the realities of living and managing a chronic illness.

I've become pretty comfortable talking about my experiences and my illness, but it didn't start off that way. Starting this blog was extremely nervewracking, and in some ways, it was easier to sit behind a computer and write to a faceless, nameless crowd than it was to talk to someone in person. Whenever I would talk with anyone in person, I would start worrying about how they saw me. Would they judge me? Do they understand? Are they uncomfortable? Can they see that I'm in pain right now? I was so worried about what other people thought of me and my story that I forgot what actually mattered. By sharing my story, I am owning my story. It's not pretty. It's filled with fear, medical problems, and discomfort. But it's my story. It's my life, and no one else's, and to a certain extent, there is nothing that I can do to change that. Living with a chronic illness is not easy by any means, but by sharing my story, I am helping others find the strength to tell theirs.

There will always be someone who doesn't understand, who judges you, or who makes nasty comments. But I've found that when I tell my story, more often than not, the reaction is positive, even curious sometimes. I've become friends with people because we've bonded over our migraines and chronic illnesses. I've talked with family friends about their loved ones, with Uber drivers, with anyone who wants to talk with me about healthcare or their own medical stories. I've been surprised by how open that people are when you show a bit of your heart on your sleeve. Never, in a million years, did I expect to be sharing my experiences on the internet and being a part of #HOH2018 and lobbying for migraine and headache disorders. It all started with me, writing a post about my migraines on a blog that only my parents and a couple friends read. The main point is that advocacy doesn't have to be about writing articles or taking monumental efforts to do something big. Just talking with people, and taking the time to explain your story and listen to their questions and their own experiences can make a significant impact. I can't tell you how many times my friends and family have had conversations with other people and tell me that they were able to empathize and understand someone else's story (whether it was with migraine or some other chronic illness) because of the conversations that we had about my story. and experiences

I'm a patient advocate because I love helping people understand and learn about migraine and chronic illnesses. You can also be a patient advocate as well. It all starts with you sharing your story.

As always, have an amazing migraine-free week!

Putting Together The Dr. Jekyll and Mr. Hyde of My Migraine Identity


It's been a while since I've sat down and written a blog.  2017 was a monumental year for me in so many ways. To start off, I am a lot healthier and more active than I have been in the last 6 years. I participated in Headache on the Hill 2017, which was one of the most exciting and fulfilling experiences that I could have attended.  I'll be back this February for HOH 2018! This summer, I lived in Washington D.C. working full-time at a start-up healthcare company named Aledade Inc. at which I learned a lot about the business side of healthcare and accountable care organizations. I've started collaborating with other bloggers and migraine websites, which has been such a rewarding and amazing experience as well. 2017 felt almost like a dream, I was so surprised that I could actually have a job, live my life, and function with my migraines.

In some ways, I felt overwhelmed by this. Blogging about migraines and invisible illnesses has allowed me to be able to put into words the wide range of emotions that I've felt over the last 6 years. I cannot tell you how amazing it feels when someone tells me that they relate to what I write about, or that it's a bit easier to share their experiences with friends and family because of my articles. When I started this blog two years ago, I had no idea how much of an impact my words would have on other people. I am so grateful to all of you who have continued to read my blog and support me during some of the hardest times of my life. Over the past year, I've truly learned how to advocate for myself. At this point, I have learned what works for me and what doesn't. I know what I can and can't eat, what activities will drain my energy, and what is and is not too much for me to handle. I've taken this mindset into 2018, and it has already started with so many new opportunities that I never could have imagined would be available to me.

Part of the reason why I needed a break from blogging in 2017 was that I needed some time to figure out my own emotions about who I am and what I do. I've talked a lot about identity on this blog, about what it means to me to be a young person living with a chronic illness. But as much as I have talked about it, I feel like I made a breakthrough this year about who I am and my life, migraines and all. For years, I felt that my pre-migraine identity and my post-diagnosis migraine identity are like a twisted version of Dr. Jekyll and Mr. Hyde. They were separate, two different and distinct parts and eras of my life. With my pre-migraine identity, I used to have dreams of working in politics, wanting to make a difference in people's lives. I was headstrong and idealistic, thinking that I could accomplish whatever I wanted to as long as I worked hard to achieve it.

After I was diagnosed, I felt like I lost my voice. I didn't feel like I was able to achieve any of the goals and dreams that my pre-migraine identity was so set on achieving. My post-diagnosis identity was focused on proving that what I was experiencing was real, which took a lot of the limited energy that I had. I had to prove to others that I was truly sick, truly in pain, and truly still a version of myself. I lost my identity because I felt like I had to prove to my friends, my family, and my teachers that I was sick and to do so I had to fit into the conceptions of illness that they had. I pushed myself, sometimes too far, to do what I needed to do to fit these conceptions, and as a result, I was left with a mindset that chided me to get to the finish line no matter the cost. Finish the essay, take the test, just push and get it done, even though you'll crash and have to deal with the after-effects. You'll deal with it when it comes, but right now, you need to prove to everyone else that you can do this, it said. My academic performance became the only way that I could prove that I was able to function, a way to prove to others that I was still "good enough" despite my illness. Being able to hold a job and living a "normal" life seemed like an unattainable goal and all of the dreams that I had seemed to disappear in front of my eyes. This was my Mr. Hyde identity, the one that was riddled with fear, guilt, anxiety and shame, the identity that I preferred to hide from those around me. When I migraine, I get sucked into this vortex of "migraine brain," full of anxiety that no matter what I do, I won't be able to succeed in any career, have productive and supportive relationships, or live a fulfilling life.

Despite how I feel when I have migraine brain, I know that this is completely wrong. Over the past 2 years, and especially over the past 6 months, I've come to realize that my identities aren't as dichotomous as I had thought. I've come a very long way since I was at my sickest, which was only 3 1/2 years ago. My identity is a mix of both my pre-migraine and post-diagnosis identities. I would not be the person that I am today without them, but I also have learned that I am a much stronger person than I ever thought that I was. In the latter part of 2017, I had to take a step back and evaluate who I actually am. I felt that in order to keep blogging, I had to come to terms with my own turbulent ideas about my identity. There was still a part of me that didn't fully accept this part of me, even though I have been writing for years about my experiences. I feel that the stigma of chronic illness is still quite tangible in my life, and I'm still reminded of the little actions that I take to protect this part of my identity from those in my life. It's taken me a while to try and be more open, but I still find myself putting up protective barriers because of the fear that people will not understand. It's kinda like a reflex, but it's one that I am trying to unlearn.  I'm trying to no longer think of myself as weak when I'm experiencing a migraine. Instead, I try to think about how my body and my mind are actually quite strong and resilient, even more so because of my migraines. It just took me a while to actually see that and apply what I preached to my life.

My experiences have brought me to where I am today, with my career goals marrying together the Jekyll and Hyde of my identities. I still want to change the world, but now I'm focusing on public health and healthcare. I am using my platform of migraine advocacy to find a way to impact national legislation in the future. Why should I be ashamed of something that is my life? I shouldn't, and I should not be scared to reach for the stars. All of my experiences have led me to this point in my life, including the good, the bad, and the sickness. It's a long process, learning to put my two identities together, but one that has ultimately made me a happier person, even when I'm dealing with DHE shots, essays, tests, and all of the other things that go on in my life. I've started 2018 with a better outlook on my life, and even though it's difficult, you all know that I wouldn't be writing about it if it wasn't an important part of my life. How do you feel that migraines have affected your identity?

The Side Effects of Vulnerability



Hello hello!
I told you all that I had some big things planned! This week, I wrote a guest post for Migraine.com , which has been a dream of mine that I've had for many years. I wrote about what it's like for me to be vulnerable about my migraines to other people and also about the balancing of protecting my friends and family from the reality and the trauma of migraines.

Please check it out, leave a comment, let me know if you like it! I am going to start blogging regularly again so I will update you all on my summer, how my health has been and other information that I've found out about migraine research and advocacy!

Click here to be directed to the migraine.com article!

Inspiring Migraineurs: Courtney Kilian


This week, I interviewed Courtney Kilian, founder of Om & Ink! I am excited to share her story with you all, because she is such a wonderful, positive soul. Her story and her work is also inspiring- and you will see why in her interview! 
1. Tell me a bit about yourself!
I’m Courtney, the founder of Om & Ink: Live, Breathe, Write, a community that merges my two passions: writing & yoga. I live in Southern California where I teach gentle yoga and creative writing. I love to garden, create collage art, hike, travel, float in the Pacific, and drink lots of tea. Migraines became chronic for me after a car accident, and I created Ease & Prevent Migraines: A Yogic Toolkit (digital or DVD) with practices specifically for decreasing migraines.
2. When were you first get diagnosed with migraines? Do you have any other chronic illnesses? What medications and tests have you been on and tried?
My road to diagnosis: I had a brain injury in a car accident in 2012, and it took until 2014 to get a migraine diagnosis. After learning so much about migraines, I know now that I had them prior to the accident—they would get bad with stress particularly around finals time when I was in college and when my mom was diagnosed with breast cancer. There was a period of time in 2007 that they were so bad/didn’t go away that I actually had a brain scan to check if I had a tumor. When no tumor showed up, there was no diagnosis and what I was going through was a complete mystery. At the time, lowering stress, eating plenty of protein, and getting back into regular exercise made a big difference in the problem, and systems only reappeared occasionally.
After my car accident, the migraines became debilitating, and I had one every day for a couple of years. I now know I’ve had a few hemiplegic migraines (where part of the body goes numb) and was sent to the ER several times—the diagnosis then: either I’d had a mini stroke or I had MS, in which case I would just get worse! Finally getting a diagnosis and learning more about migraines helped me a great deal because I had place to start for addressing what felt like very bizarre and unrelated symptoms.
Other chronic illnesses: I have fatigue, severe allergies, and ongoing symptoms from a brain injury that I work with on a daily basis.
Medications, tests, and things I’ve tried: I’ve taken all sorts of tests from MRIs to CAT scans to EEGs. I’ve tried prescription medications and had the best luck with Sumatriptan, although I’ve found now that natural alternatives work just as well. I’ve also done Botox, which made a big difference in the beginning, but didn’t feel like a long-term solution. Botox injections are given every three months and during that span I would have one great month in the middle and the two months bookending the treatments filled with migraines where the Botox was either setting in or wearing off. It was incredible to have some relief when I’d had them daily, and I was thankful for the breaks, but it was also frustrating to feel so good and then be hit hard again. I began planning my life around that one month out of every three where I could actually do things and get work done. This is when I really started researching migraines and reading everything I could about what they are, how they are caused, what their triggers are, and beginning to try more natural methods to heal myself. I was eventually able to stop Botox treatments and manage my migraines myself.
3. What have you found that works for you?
Self-care, listening to my body, natural remedies like ginger instead of migraine medications and essential oils like lavender, frankincense, and wintergreen, yoga and mindfulness practices, and acupuncture!
4. How do you cope with your migraines?
Patience and self-love. I hope that doesn’t sound cliché or annoying, but it’s incredible how far they go. It can be one of the most challenging things to say ‘No’ to things you really want to do and to constantly miss out because of chronic illness, but I’ve learned to listen to my body. I now know that if I need to rest or feel a slight migraine symptom coming on, it’s better that I give my body what it needs right then, rather than pushing it. When I push (and I’ve learned the hard way many times!), I can be in bed for days or even weeks instead of a few hours.
5. What motivated you to share your story?
Chronic migraines can take over your life. When I began making breakthroughs and being able to help my migraines with natural things I could do myself, my life changed, and I couldn’t wait to share that. I think anytime we can take healing into our own hands, it’s such an amazing thing. I also think migraines are way underdiagnosed—I know people who think they just get ‘bad headaches’ or sinus headaches, but when they start treating them like a migraine instead of just a headache, they get better. I want to share what I’ve learned to help others.
6. What is one thing that you always have with you in case of a migraine?
I keep what I call my ‘migraine toolkit’ with me at all times. It has ginger in it (chews and the actual spice which I can add to a little water) and some essential oil blends that I can easily take/apply when I start to feel one coming on and I’m away from home.
7. What's a stigma (or stigmas) about migraines that you wish people knew the truth about?
A lot of people think that migraines are just bad headaches, and they aren’t often seen as a chronic illness. Extreme sensitivity also goes hand in hand with migraine sufferers, and for those that aren’t hypersensitive to stimulus, it can be hard to understand why I might need to wear sunglasses even in someone’s home, need the volume turned way down, or have a difficult time being around people or places with lots of smells.
8. Lastly, do you have any words of advice for other migraine patients?
Don’t get discouraged. Migraines can be so debilitating and affect every area of your life, but there is hope. The more you learn and arm yourself with information, the more you can manage them so you have control and not vice versa. And, you don’t have to be tied to medications your entire life—our bodies have the amazing power to heal and support us, if we give them what we need. It can be tough to find exactly what that is, and to change habits, but it’s possible and life-changing.

Follow Courtney on Instagram @om.and.ink, find her on Facebook, and visit her website here.

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