MHAM: Days 19 and 20

Day 19: Kelly Clarkson’s Stronger

What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone

I really like those lyrics. For the longest time I felt so isolated with my pain. I didn’t feel stronger for a long time after the attacks but now I do. Before when I was isolated, I had a hard time feeling better after the attacks, I just felt weak and defeated. Now I’m stronger, more hopeful. Just because I’m alone doesn’t mean I’m lonely, I have a ton of friends and supporters who will help me through the storm.

Day 20: Role Model

Everyone I’ve met with headaches and migraines are a huge inspiration to me. They all continue to blog through the pain Raising awareness rather than suffering alone. They are beacons of hope in the dark. They keep the light on for other wayward migrainuers, welcoming anyone with warm arms and advice. The migraine community continues to inspire me and bring me hope every day. When I’m feeling down, I know all I have to do is shoot someone a message and I’ll receive out pouring support.

I love you all and I hope you all know what a difference you’ve all made in my life just by having a little blog.

MHAM Day 14: Hope lies in dreams, in imagination and in courage

Day 14: “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams a reality.” Jonas Salk

This comes from a man who found a vaccine for polio, a previously incurable, devastating disease. I’m not sure how much you can compare the two, polio and migraines but the message of hope for a cure rings true for both. Polio is a virus, migraines are something else entirely. Such little research has been done about migraines. We are not looking for a cure for migraines, but rather management.

As far as the quote goes, we, migrainuers, can only dream of a cure. We dream of a life without debilitating pain. We dream of a normal life. We dream of spending more time with our families and less in the darkened, silent bedrooms, with our treatment options. I dream of a life where I do not have to take medicine where I fear a missed dose. I dream of a life where I am 100% me not not divided between who I am and who I am with a migraine. My reality is that I’m never going to get that time back and my reality is that I’m going to lose time in the future. My reality is the only escape from the pain is sleep where I dream of my normal life still being invaded by headaches and migraines. Taken quite literally, my only hope of a normal life is in the world my unconscious mind creates when I sleep. My greatest fears should not be a missed dose of medicine, or not having enough medicine. It should not be worrying about making up classes, praying for the kindness and forgiveness of others, strangers, professors, for a condition I have no control over. I should not be worrying so much about my future as a functional human being at 21. This worrying started at 13. My greatest fear should be heights or spiders, not my own body. I should be fantasizing about my future career, spouse, and children, not headache care. I should be out on the weekends, having fun – not recovering from a weeks worth of headaches. Not dreading the next one.

Maybe our suffering isn’t enough. We are such a minority. We are not dying because of migraines, not matter how much we blame them. They call it depression. We scream into the void for help only to be blocked out by the bigger groups. We are the invisible patients, we are the lost patients. We are the ones suffering from such a misunderstood and under-researched disease that instead of being put under the microscope we are thrown out the door. We have no medicine for our illness. We take depression medicine because it’s really good for headaches too. Or blood pressure medicine because it helped someone’s headaches in the clinic trails. Or something else because it turns out it helps with migraines too. Not because it’s for migraines. Our medicine, cymbalta, topamax, botox, zonegran, are all flukes. Our medicine for the treatment of our disease is just a by product. Someone came up with these medicines to treat a more in demand, more profitable, disease – blood pressure, depression, seizures and we are given it as an after thought. We suffer from an illness, a debilitating, life threatening, disease unlike no other where there is not a single medicine made just for us, for our treatment. Because we alone are not enough. Our suffering is not enough to them.

I have suffered every day. I’ve been to numerous doctors. I dream of a life without I don’t wake up with a headache. A day where I do not want to immediately go back to sleep. Where I wouldn’t dread the headache to come, that I know will come. Where I don’t have to fear the big one because I have a preventative, I have an emergency medicine that makes me feel better, not worse. Where I didn’t have to wish I could fade into the void, where my headaches couldn’t find me. Where I’m free.

I still fight, I still go to the doctor’s appointments. I’m still trying new medicine. I don’t know if that’s courageous or stupid. It has to be courageous because without it being courageous, I’m nothing but a migraine.

MHAM Days 11, 12 and 13

Sorry for the two missed days – OITNB took over my life for the last three  days.

Day 11: What do you do or say to help other have hope?

When I encounter someone with a headache I try to be as helpful as possible. When one of my students in my field experience was experiencing a headache, I asked her if she wanted to go to the nurse, let her keep her head down and tried to keep noise levels down in the classroom. When one of my friends, Gwen, experienced a migraine in class, I took her back to her apartment. I lent her my sunglasses. I offered her medicine but was short on an imitrex. I just try to be the person that I would want during an episode. (despite that,  I haven’t encountered anyone too nice during an attack but I am pretty mean during one)

I hope this blog brings others hope. This is just one act I can do, reaching out to others to help them understand that they are not alone, not crazy and are heard. I felt crazy for so long, I just hope no one else ever feels like that.

Day 12: Quote: “The birds of hope are everywhere, listen to them sing.”

This quote makes me think of all my well wishers. All my friends tell me to feel better every time, despite some of my nastier replies in the past. They celebrate with me when I am feeling better. They ask about doctor’s before and after visits. They are all around me, wishing me well and celebrating every little victory along with me.

Day 13: What in nature brings you hope?

Definitely stargazing. The night is calming, still. There are millions of stars in the night sky. The quiet, isolation is calming. I like to star gaze with friends around a bonfire. The whole experience brings me hope.It makes me feel like I’ll be okay despite the headaches.

Migraine and Headache Awareness Month Blog Challenge Days 9 and 10

Day 9:

Brian McKnight’s Win “share with us which of the lyrics you believe”

What a beautiful song. It’s not really my usual type of music I listen to but still a beautiful song. It’s really hopeful. What instantly came to my headache was my 7th grade self, when the headaches started and the journey thus far when I heard “No stopping now / There’s still a ways to go, oh / Someway, somehow”. I hope I’m closer to the end of my headache journey then the beginning but it’s a long journey, with a ways to go yet. The chorus rings true for more than just us migrainuers, ” I’ll never give up / Never give in / Never let a ray of doubt slip in / And if I fall / I’ll never fail / I’ll just get up and try again” Anyone determined to accomplish their goal can’t give up. The last line of the chorus reminded me of the lulls between migraines where we live our lives. When the migraine is over we just go on like nothing happened because we have too. It seems almost frivolous to experience something so powerful, so painful without something physical to come out of it. All I have at the end of a migraine is an empty blister pack that once had an imitrex.

Day 10:

Write about any ways you have to find hope on a dark day.

I find hope in the idea of tomorrow. Tomorrow is this magical place where everything is done and I feel fantastic really to tackle the next thing that life throws at me. Tomorrow might not be 24 hours from now like the word denotes but just when I feel better again. I might not feel better in 24 hours from now, it might be 48 or 72 but I will feel better than my lowest point at some point, and then I will be invincible.

Tomorrow is also an out for me. Everything can wait until tomorrow. The world is not ending tomorrow, it can wait. That paper can wait, that reading can wait. I use to run myself ragged, staring at pages with my mind blank. Forcing myself at a crawling pace to finish that reading and writing as quickly as possible so it would be done. That’s just torture. I would punish myself on top of feeling like crap. Now it all gets pushed to tomorrow and I take care of myself first.

MHAM Challenge 4

What large thing gives you hope for living with Headaches and Migraines?

The huge community of supporters I have give me hope. Be it my family, friends, doctors or my readers, they all give me hope. You all genuinely wish me well. In my darkest moments, I remember everyone else. How much they love me or like me, how much they wish they could help me, how much they do. My family has been a big support in the beginning, living with my migraines with me. While they do not experience them directly, they see me suffer. My friends learn how to help me and do everything they can to help me when I need it. Some of my doctor’s have been wonderful, helping me to feel better and keeping my health on tract, especially my gynecologist and neurologist at Jefferson. Both Dr. Smith and Dr. Goldberg have been so supportive and wonderful. This blog has helped me move from just suffering alone to advocacy. Sharing my story with others has not helped other, I hope, but helped me as well. I know how to connect with people, be it a phone call or a blog post – I can connect with someone who understands and can help me convey my feelings and that gives me hope. I’m not suffering alone anymore.