The Art of Positivity and Asking for Help

3:00 PM chronicmigraineellie 0 Comments

A lot of people ask me how I can be so happy when my life always feels like such a mess medically. Something is always wrong, I always seem to be fighting for something and on top of that my personal life feels like it is always changing, for better or for worse. My mom jokingly calls me Pollyanna because I seem to have such an optimistic view of life for most things. I always say that if I got stuck on the negative parts of my life, I would be constantly depressed. That's not to say that I don't have dark moments, because trust me I do. But I've figured out how to appreciate the small things in life and not let the darker moments take over.

I try and find something to be happy about everyday whether it's enjoying the music that I listen to while I'm walking to class or a nice text from a friend on a bad day. It's realizing that life is a bunch of ups and downs, and I've learned how to adjust my expectations which has allowed me to become a happier person when I can't make it to class, cancel plans, or finish an assignment. When I first got sick, I used to define myself by my grades. I saw no other way to express myself because I felt that my identity had been stripped and I wasn't physically able to do what I loved anymore. I was no longer the person that I had known for 15, almost 16 years. When I could function, I became engrossed in my academics. It was all about doing well and proving (to myself or to my teachers) that I was capable, that I was normal, and/or that I deserved to be in the classroom as much as any other student, despite the neurological problems I faced. I would do whatever it took to finish the essay or cram for the test, even if it meant that I hurt my health in the long run, and made it more difficult to focus, read, talk, or write. At that point in my life, the end result outweighed the process and the harm that I did to myself to get there.

It's taken a while to unlearn these habits. Being in college was the first time that I realized that I didn't have to push myself to my physical and mental limits to accomplish what I wanted to. I didn't have to fear missing class or taking time for myself when I needed it. I could take a day off from working to recover and the world wouldn't feel like it was collapsing.  To put it bluntly, I learned how to put myself first.

Once I learned that the only person that I had anything to prove myself to was myself, it slowly became easier to deal with the reality of my life. I stopped feeling like I had to prove that I deserved to be here. I know what I'm capable of. I know my strengths and weaknesses. I know who I am. I don't have anything to prove to anyone else. It's easier to find happiness when you're not constantly fighting everything. My first defense when something goes wrong is to fight. I get defensive so that I can protect myself. Unfortunately, fighting is so tiring and draining. It's never easy to fight for something that you shouldn't have to fight for. The past three weeks of my life felt like I was fighting for things that became so much more complicated than they needed to. It was physically and mentally draining. It definitely brought back some PTSD from high school, and at a certain point, I definitely felt like giving up. Instead, I turned to my Dean of Disability and Accommodations for help. She helped me so much through the process and took a lot of the fighting out of my hands. It was a relief to know that I had someone in my corner. It's such an internalized defense for me to fight for myself that even when I have the support systems in place, it is still sometimes difficult for me to recognize that I can't do it all on my own.

It's okay that I can't do it all on my own. It's taken a while for me to realize it, but I don't have to. I can still be strong and an advocate for myself, but I can also have faith that not everyone is out to undermine me and my needs. It's a lot easier to think that way, even if there are some people who aren't the nicest or don't understand the accommodations that I need. I have my support system. I'm so lucky to go to a college that works hard to take care of me. I have amazing friends who care about me. I feel so lucky. But just because I feel lucky, that doesn't invalidate my feelings of isolation and loneliness. Emotions change. You don't have to feel the same way all the time. You can be happy at one point and sad and upset at another. I've just realized that I prefer seeing the good in my life as opposed to the bad. It's taken a long time to get into this mindset, and even to be able to ask for help without feeling guilty or like I'm burdening someone.  For me, it's a big step.

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


Inspiring Migraineurs: Sara Long

4:45 PM chronicmigraineellie 1 Comments

After meeting so many amazing and inspiring people from Headache on the Hill and other people
that I've met along the way, I realized that I wanted to start a new part of my blog that is dedicated to people
who have inspired me. Sara and I became friends after working together at Headache on the Hill 
2017, and right off the bat, I knew that we would be friends for a long time. She is one of the 
most passionate, driven and optimistic people that I know. I hope you all enjoy this interview with

1. Tell me a bit about yourself!
  I am a grad student at CSUF (California State University, Fullerton) majoring in history – I will be graduating this upcoming May! I also received my BA in history and minor in anthropology at CSUF, and my AA from Orange Coast College. When I was in high school I began working as a makeup artist for MAC Cosmetics and also opened my own freelance makeup business, Makeup by Sessa.When I began grad school in 2015 I left MAC and Makeup by Sessa to begin working as an Art Conservation Assistant for Griswold Conservation Associates. Not only have I worked as a makeup artist and now begun working in the field of art conservation but I have been an oil painter ever since I was little. Painting remains my oldest passion and favorite pastime. It’s my favorite thing to do when I need to “recharge.” That is probably why I fell in love with makeup as well. It is painting, only upon a living canvas. Makeup, painting, and studying history have become central parts of my identity and I would not change that for anything. However, an aspect of my identity that I could do without would be that I’ve been a chronic migraine patient since I was 17. Roughly eight years now

2.     When did you first get diagnosed with migraines? What medications and tests have you been on and tried?
I was diagnosed with chronic migraines at 17 years old. I was first given Imitrex for my migraines. I did not take it for even a full year because the medication made me severely nauseous. Imitrex did not help my migraines at all, but rather made my migraines worse!The next medication I was put on was Topamax for a preventative migraine treatment. I also started receiving opioids to take for the pain during a migraine attack. I stayed on Topamax till 2016 and then started taking a beta-blocker and antidepressant for preventative treatment.  I also tried the Botox treatments in 2015, but they did not work for me.I have also lost count of how many different holistic treatments I’ve tried. Simply put, they did not help my migraines.  

3.     What is it like being a graduate student with migraines?
  To say it’s challenging would be an understatement. Grad school alone pushes people to the brink       of their sanity and academic limitations, but simultaneously experiencing debilitating migraines,         really complicates the process. Migraines and grad school is a recipe for disaster. Migraine    paitents know that it’s best to establish a routine in your life to help prevent future migraine attacks (taking your medicine at the same time everyday, getting enough sleep, making sure to not go too long without eating, etc.). However, establishing and maintaining routines is almost impossible in grad school because you barely ever get enough sleep, sometimes forget to take your medicine because of a extremely hectic schedule, and so on… I deal with grad school and my migraines one day at a time because otherwise my life can get very overwhelming. As long as I continue to focus on the things that I can control in life, I know I will be able to graduate. I will also stay hopeful that migraines can be cured within m lifetime.

4.     How do you cope with your migraines?
  When I was first diagnosed with migraines I did not cope with them very well. I would get frustrated and sad, not only at the fact that I could not control or determine when a migraine would begin, but also with how difficult it was to describe to my friends and family how I was feeling. Throughout the past eight years, I’ve learned that being honest with people about how I am feeling during a migraine attack makes a huge difference in the help I receive from friends, family, and doctors. I have learned to not be ashamed when asking for help. I’ve also embraced counseling. I highly recommend it, to anyone, but especially patients with a chronic condition. Having a non-biased party to discuss your life with helps you learn to lead with logic, and not so much with emotion.  I have also learned to forgive myself. People with migraines tend to put unrealistic expectations on themselves—I am definitely guilty of that. Learning to be kind to myself was the best thing I ever learned to do to help with migraines.

5. I was with you at Headache on the Hill 2017 and you were an amazing partner! What made you want to share your story and become a migraine advocate?
   I wanted to be a part of HOH and advocate for myself and other migraine patients because the healthcare system made me very discouraged. For many years I felt like so many people did not take me seriously when I described to them how I felt during a migraine attack. Additionally, I thought that my doctors were only treating the systems of my migraines and were not attempting to discover the root cause of my migraine attacks. 

6. What is one thing that you always have with you in case of a migraine?
 Polarized Sunglasses. I drive a lot for work and bright headlights are painful to look at while driving. There are also fluorescent lights at my school and those can be extremely painful to look be around during a migraine attack. Sensitivity to light is one of my chief migraine symptoms, so much so that I get nauseous from too bright of lights when I’m having a migraine. I also have Pedialyte during a migraine attack. Not sure why it helps, but it does. Also, I recently bought the Migraine Hat on Amazon and it really helps!

7. What's a stigma (or stigmas) about migraines that you wish people knew the truth about?
  I wish people would not confuse the terms “migraine” and “headache."  The simplest way to describe the difference between the two would be that migraines are a neurological disorder and headaches derive from muscle tension.  I also wish people understood that disability does not mean inability. Many people live with disabilities, but that does not mean that they can’t achieve their goals or live a normal life. 

8. Lastly, do you have any words of advice for other migraine patients?
1) Be forgiving to yourself
2) Do not stress about the things you can not control
3) Advocate for yourself and your medical care
4)Take  control of your healthcare plan
5) Question your doctors and do not be afraid to ask about their experience in treating migraines
6) Do not give up or lose hope—even though you may feel alone during a migraine attack and like no one understands the physical pain, THERE ARE people fighting for new research and advocating for your healthcare
7)Take  a deep breath and allow yourself to rest
 8)TALK about your migraines to those around you!—no one can help if you do not tell them how
  9) Do not stress about how other people perceive you

Follow Sarah's instagram and her twitter!

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