An Open Letter to America's Health Care System


To whom it may concern, 

This entire week, I've sat down trying to write something intelligent about the outcome of our election.  As a woman, as a person with a disability, and as an ally to the POC and LGBTQ communities, it is up to us to make sure that we hold fast to our ideals with hope and activism.  While there are so many more problems that I want to address in terms of the deep hatred and pain in our country right now, I am choosing to write this blog about a community that has not been talked about as much: the disability community. 

I woke up scared on Wednesday, that my illness and disability would not be validated, that I would not be able to get the medical care that I need in the coming years. I have already fought my insurance so many times just to get the medication that I need, and I am lucky. I am lucky to be in a privileged position where I am able to afford the doctors and medicine that I need, and I have the ability to fight for it. Others are not so lucky. As it stands, too many Americans are unable to get the medical care that they need. Whether it is being able to see specialists, run tests or afford ER visits, too many people suffer because they cannot afford the necessary tests and medicine that they need. This is inexcusable. 

As sufferers of invisible illnesses and chronic pain, our voices need to be loud and clear in the next 4 years. We are heading into a political climate where we are looked upon as weak, as people who just take from the system, regardless of our pain or our inability to function. Now more than ever, we must speak up and we must force others to see our pain. We will not be invalidated, and we will not be marginalized. 

Regardless of political affiliations, race, gender, sexuality or anything else, it is important that we continue to raise awareness and rally for our rights. I've been thinking more and more about my own future this week. I realized that I love being able to voice my opinions, and to help others feel like their voices are being heard as well. The reason why I started this blog was to help others feel like they are not alone, but this week it has become apparent that I am doing so much more. I plan to be a voice that talks about issues that America does not like hearing about. Listening to accounts of pain and illness scare many, as it reminds them how they too are susceptible to illness at any time. This is why it is so important that we continue to support everyone. My fight is not just limited to migraines, even though that is how I personally fit into the puzzle. It will take all of us, everyone in the spoonie community, to affect change. Whether it's about the prescription of opioids, lessening harassment and hate crimes of people with physical disabilities, or fighting to make sure that everyone has equal access to healthcare, it involves all of us. We are all responsible for shaping how this nation's healthcare will be shaped in policy. We know about the red tape, the corruption, the defeat that goes into navigating this system. I hope to be someone who will affect this change, and I'm hoping that you all will support me and also yourselves in this fight as well. We are strong, but we are stronger together. Every action counts. I know that this is much more politicized than any of my past posts, but I felt that it was important to address this, regardless of political affiliations. 

As always, have an amazing, migraine-free week. 

The Path to Nowhere: Dealing with Loss and Emotions

As I'm sitting down to write this, I'm realizing just how hard the past month or so has been on my body. I've experienced loss, happiness, and exhaustion. As much as I wish I could, it's been extremely difficult for me to put my feelings into concise thoughts. I feel a bit scatterbrained- like there are fragments of my thoughts and emotions going around my head. Maybe it's because I've had a couple migraines this week, or the emotional stress that I've been under, but lately I've felt like I've been trapped under a rock. I'm a fighter- I've always been a strong person. It takes a lot for me to feel like I'm struggling, but this was one of those weeks.

I felt so much physical exhaustion, the only thing that I wanted to do was press pause on life and sleep for weeks until I felt better. I did all of my readings, turned in assignments on time, I was doing everything that I set out to do. Well, everything but feel healthy. I started thinking a lot about the fact that I can't really remember what it was like to not be sick. It sometimes feels like I'm running on a trail, but there's no end in sight. I can enjoy the beauty of the world around me and relish the feeling of being free, but sometimes I have to stop and catch my breath or I'll collapse.

I think that there's a strong correlation between my emotions and the frequency of my migraines. When I have a migraine, I lose all ability to rationalize. It's like my emotions become a deep, dark black hole that you can't get out of. Something as trivial as forgetting a pen in class, or putting on a piece of clothing inside out will reduce me to tears. It's not exactly a great feeling, it's feeling intense anxiety and depression to major extremes, but only for a couple hours or a couple days. It's hard, though, because I often forget that I'm allowed to feel emotions. I try so hard to be strong all the time, to myself and to others, that when I get lost in these vortexes, I forget that they are just my amplified emotions.

Dealing with the loss of a very important doctor and friend of mine, I've been faced with a lot of questions surrounding my illness and my life. What would've happened if I had never met Dr. Graff-Radford? What would my life be like now if he, too, had given up on my case? How do I deal with the loss of someone who truly believed in me, even when I was constantly in pain and couldn't function? I don't know the answers to any of these questions, but over the past two weeks, I've reached other solutions.

I was so lucky to have a doctor who believed in me so much. I would not be where I am, academically, medically or personally if not for him. I can remember the first time I met him how he looked at me and said, "Let's get your life back." No doctor had said that to me before, and I had seen at least a dozen at this point. I wasn't just a patient chart, or a bunch of symptoms, I was a person. The work that I'm doing now, raising awareness about chronic migraines and invisible illnesses, is for exactly the same reason why I loved Dr. Graff-Radford; because I want to help others realize that you are not your illness. It is a part of you, a part of your life, but it does not have to be the thing that defines you. The fact that we are still standing, still walking on this path leading nowhere, means that we are so strong. There is a light at the end of tunnel, an end to that trail. It just takes the right person to make you realize it.

I'm still exhausted. I'm still sick. I'm still an emotional person. But I'm also smart, strong and resilient. I am more than my illness, and so are you.

As always, have an amazing, migraine-free week.

For the Flare-Ups that Feel Like I've Lost My Life, Again


I'm sitting in bed after a week with minimal sleep, a four day migraine, and a tsunami of emotions. I postponed an essay, fell back on readings, and cried more than I slept. I was incapable of giving myself a shot because the pain was too bad. I felt like a zombie, just trying to make it to my classes.

I'm tired. There's no other way to put it. I'm exhausted. I'm tired of pretending that I'm okay and I'm tired of feeling surprised when I get a bad flare. Why should I be surprised? This is my life. It's not a glamorous or happy thought at all. My life is made up of moments where I am preparing for the worst. This week, after getting an abortive shot, I was talking to my Dad. I actually made a plan to check myself in for a 3-day acute treatment this weekend if the shot didn't break my four day long migraine. There's nothing that hurts more after being relatively stable for months than being in so much pain that you can barely function.

The worst part is that I actually second guessed myself this week. I worried about my life, and everything that I've worked for in the past year and a half, being taken from me because I wouldn't be able to function. I worried about what will happen when I am living alone after college, when I can't give myself a shot, but can't function enough to find a way to get to a hospital or my doctor's office. What about all the times when I struggle just to walk back to my room? What about I tell my friends that I'm fine, I'm alive, but really I can barely make it out of bed, let alone my room? How do I mentally prepare myself for a reality that I've already lived through?

I've already lived through the worst. I was one of those migraine cases where doctors turned me away because they didn't know how to help me. I lost all sense of stability and structure in my life, and my entire world went from anything that my mind could imagine to the four walls of my house. The things I loved, playing violin and soccer, became just a memory because I didn't have enough physical strength to even walk downstairs. I was basically on bedrest, at 17 years old. I wasn't sure if I was going to graduate high school with my friends, let alone go to college. I know that I can, because I'm here. But sometimes, it's not the fact that I have been able to get where I am, it's the fact that in a second, I could be lying in bed sleeping for 15 hours a day with absolutely no memory for months until my brain recovers from the trauma that is getting 7 migraines a week for months at a time. It is trauma, because it takes my body days, if not months, to recover from these flare-ups. It's not just a headache, but god do I wish it were. Sometimes, I wonder how my life would be if I wasn't sick, because sometimes I forget. Every once in a while, I forget that I am a chronically ill person and feel normal. It's a blissful but fleeting moment. How do I move on with my life when I'm constantly reminded of everything that I lose if my illness flares up and spirals out of control?

I don't know the answer to the question, but I wish that I did. I know that I'm a strong person, because I have lived through some of the worst parts of my life already. I know that if I lived my life expecting the worst, I really wouldn't be able to function, because I would never see any reason to. I would lose all hope. Hope isn't what gets me through my day, though. I get through the day because of my own strength, and because of the strength of my friends, my family and the online community of spoonies who, like me, have started writing and blogging about our experiences. I get hope from all of you, because your support of me and my blog gives me a reason to keep doing what I'm doing. I am the happiest that I've been in a long time. I'm also exhausted. The two are not mutually exclusive, and neither are my health and my life.

As always, have an amazing, migraine-free week!

Dating Myself: How Learning to Love Myself Allowed Me to Date with My Invisible Illness





This week, for Invisible Illness Awareness week, I wrote an article for Health Bloggers Community Magazine. It's a very personal post, and something that I've been thinking a lot about lately.

"Letting someone into my world becomes like a game of battleship: I never know at what point they will become fed up with the challenges in my life"

Read more at http://magazine.healthbloggerscommunity.com/dating-invisible-illness/

As always, have a lovely, migraine-free week!

I'm Not Superwoman, I'm Just Me

Recently, my life has felt like a whirlwind.  I'm back in college, I'm taking 4 classes, running my acapella group, writing for my blog, seeking out public health internships and pursuing advocacy efforts. A year ago, I wouldn't have even dreamed to be where I am today.

Every three months, I get my Botox redone and like clockwork, the two weeks before bring my life to a complete and total stop. I missed classes, couldn't leave my room, and I felt like the whole world was crashing down on me. I was on the phone with my mom, crying, because I was worried that I was over-doing it. I had planned my schedule so carefully, I was trying to take care of myself, why was this happening to me?

It's not unusual to have ups and downs with a chronic illness. In fact, that's just our lives. In the past couple months, I've been more stable than I've been since my diagnosis. Yes, I've had some scares:
blacking out in class, false positive test result for a heart condition, new migraine symptoms, but overall I've been happy. So happy, that I actually am starting to look towards my future.
I haven't done that since before I got sick. I had dreams, but I quickly put them aside because if I couldn't even get to class, how would I be able to get a job? I had big dreams; I wanted to go into politics, I wanted to be a diplomat, maybe even work my way up to Secretary of State. The sicker I got, the less I held onto that dream. How could I ever hold public office with this dark secret following me around? I needed to be accountable, and in my eyes, then, I wasn't.

Periods of stability are amazing, but they can also be harrowing. This summer, I thought about the possibility of going to medical school after college, maybe going into public health, but either way, I am so passionate about raising awareness about invisible illnesses and migraines, why shouldn't I pursue it? Just as soon as I was beginning to get excited about my future, my emotions came crashing down to try and keep me in check. I don't know how I am going to be in a year, let alone 3 years. I need to pace myself, do things a step at a time. Slow down.  Just wait a minute. My life has built in caveats, disclaimers for everything that I do. No matter how big my dreams are, I'm hit with the reality that this is my life and I have to take my illness into account. Every once in a while, I feel like my old self. I have energy, I can run around from meetings to rehearsal, from events to homework without having to stop. These days are so few and far between, that when they do happen, I forget that I actually am sick. I feel capable. I feel alive. I don't feel like I'm just trying to get through the day, I feel strong and proud.

I should feel like that all the time. I should feel proud of myself for everything that I'm doing, but sometimes I forget. I can be a bit headstrong, which is great sometimes but when it comes to emotions it is definitely a flaw. Brain fog and headstrong opinions are two things that should never come into contact with migraine emotions, and when that happens, no matter what I do, I cannot convince myself that I am the strong and capable person that I am today. I know that it's not true, but there's something about my emotions when I migraine that pull me into this emotional vortex. I underestimate myself and my resilience all the time, which I shouldn't, seeing that I'm still alive and fighting 5 years after my life was completely up-ended.

Maybe this is just the ramblings of an intense week, and the aftereffects of a couple bad migraines and the botox, but for anyone who feels like they are not enough, like they aren't capable, or that they're useless because of their illness, you're not. To be as strong and resilient as we are, we have to have some off days. It's hard to be strong all the time, it's exhausting. It's okay to feel upset, but just remember that you are amazing. You are capable and you CAN do whatever you set your mind to. So do those power poses, listen to that song that makes you want to dance and sing, take that bubble bath. Even though it's difficult, embrace the moments that make you vulnerable. You'll only come out a stronger person, I know that from experience.

As always, have an amazing migraine-free week!
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