Monthly Archives: June 2015

Day 30 Migraine and Headache Awareness Month Blog Challenge: Thank you

Today AHAM asked us to pick our favorite. I have read about every post, so this was hard. So, I chose a post of everyone who made it to the end. I don’t think I missed anyone

I’m going to start with Laura McKee aka happy girl. Day 23: Do you hope for a cure.

Can we believe that we really are anyway near finding a cure? I cannot stand any advert or ‘plan’ or ‘remedy’ that claims to be a cure now. At the moment there is NO CURE FOR MIGRAINE! And we are a very, very long way from finding one so please don’t tell me that there is-or that we are to believe that we are even half way there! You see someone might have found a diet or supplement or whatever that works for them and a set number of people but there is NOTHING that has undergone proper clinical research AND been approved as a migraine cure! I could go on, however, I’m sure there are many other blogs that have spoken of the same thing and I WILL be tweeting those avidly!

I agree. People criticize me that I do not have that hope. There is no cure. We need to bring that point home. People need to stop telling us to plan for things for after we get better.
https://laughingwhileyourecrying.wordpress.com/2015/06/23/day-23-mhambc-mhambc-hope-for-a-cure/

In response to the MV on June 19, Tammy Rome wrote about how the phrase “what does not kill you makes you stronger” is determent. I was told that several times in school, I still cannot see how the pain itself has made me stronger.

That phrase is on my Top 10 List of Worst Things to Say to Someone in Chronic Pain. Every sentiment on that list got there because it’s not true, and it’s insulting to patients in pain. I know, I know. Every time I challenge one of these supposedly “uplifting” sentiments, a backlash occurs from those who find the statements helpful. Hey, if it works for you, great. I still don’t like it.

Strength does not always come from merely surviving. It doesn’t come from breaking or being broken. Strength can come from mending and being mended. Yet some broken things are tossed out. Some are repaired, yet remain weak. Some are stronger once repaired. Sometimes broken pieces are remade into things of beauty. There is no one path to strength.

http://brainstorm.tammyrome.com/stronger-mham-blogging-challenge/

Ariestess, Mental Meanderings, wrote about a quote that I really like on day 1: Emily Dickinson poem, “Hope is the Thing with Feathers”. i can relate to how Ariestess interprets the poem. I also would not to use it for death but for the suffering.

2“While there are those who would use this poem for those grieving the loss of a loved one, I don’t see it that way.  To me, it really is about hope and about things getting better, even when it feels like they won’t.  I guess I’ve always got a tiny little optimist inside whose spirit will never be completely snuffed out by the depression and pain that can overwhelm me otherwise”

http://ariestess.tumblr.com/search/MHAM/page/4

Nikki Albert, Brainless Blogger, the one that stuck out was day 29: What is Hope. I enjoyed her description and agree with it. Hope is in the now and gives us inspiration for the future. Hope is the belief of possibility and hopelessness is giving into the thoughts of impossibilities.

The human mind is special in the sense it has the capacity to project into the future potential outcomes and have expectations, desires, dreams and goals about that future. If in the present moment we are suffering we can a) believe in the future it is possible that suffering will diminish b) that the suffering will be worse in the future or c) that it will remain the same. If we were to say the past dictates the future, someone with chronic pain would look at their history of pain and logically believe the pain would either get worse or stay the same in the future. Hell, even research suggest the brain gets fixed in its experience of chronic pain, which is hard for it to ‘unlearn’. Hope resides only in our capacity to believe that it is Possible we will have some relief from suffering in the future, in some way. Not necessarily the belief of a cure from the pain, which might at this current stage of the game be unrealistic, but for less frequency of attacks, less intensity or just less general suffering so we can better cope with the attacks that we have. History may not give us any reason to believe this will actually happen. Quite the contrary in fact. Which is why hope comes from an optimistic place, or at the very least, a place of possibility. Rather than the lack of possibility.

http://brainlessblogger.blogspot.ca/2015/06/day-29-mham-mhambc-what-is-hope.html

I enjoyed Roni Jones‘ post on the 7th day, activities and hobbies. I read a lot as a kid. I also enjoy stories, books and movies, to manage the pain. I can’t read sometimes because of the pain, so I started getting books on tape. They give me hope the same way they give Roni hope.

Reading takes you to another world, one that is much different from the one you are currently in. To put it quite simply reading takes you away. For me reading as become a way to escape from the chronic pain that I find myself in almost everyday. For along with Migraines, I also have Fibromyalgia and DDD throughout my spine. So diversion techniques have become a way of life for me, or I would have gone mad some time ago. There are days when a Migraine is so bad that reading is impossible, but the other days it can be my salvation!

http://www.healthcentral.com/migraine/c/728579/176343/day-7-blog-challenge

Jamie, our Migraine Diva, wrote on day 28 that hope is always attainable. It reminded me of different ways we hold on to hope that others find silly or the weird things we do. I don’t pray to feel better anymore, I leave that up to other people. I buy a bag of m&ms and separate the colors. A lot has been taken away, I can’t do what I want. But when I’m in a dark place I can do little things so when people ask why I can say, I do what I want.

his quote brings about a lot of introspection.  I have found myself to be in the dark many times.  It surely felt as if hope was no where to be found, but it must have been around because I made it out and back into the light each time.  Hope can come in many forms.  It manifests in the prayers of others if you are unable to seek it out for yourself.  Hope is the little voice in your head whispering to you that you can get through this obstacle.  It is that urge to push through the pain despite your medications not working.  Hope is acknowledging that there is always a dawn around the corner.  Never lose sight of the light that hope promises.  We are not stuck in a black hole devoid of light.  Sometimes it feels like we are but we must remember that we always have a way out of the darkness.  Whatever method you choose to find peace and calm is your way toward hope and light.  Meditation, prayer, hot baths, a cup of your favorite tea, a nap, or watching your favorite movie for the thousandth time…No matter the way we choose, light is always attainable IF you remember not to forget that it is always in your reach.

The Anne Lamott quote is Hope begins in the darkthe stubborn hope that if you just show up and try to do the right thing, the dawn will come. http://themigrainediva.blogspot.com/2015/06/mhambc-day-28-light-can-always-be-found.html

Sign off with Chronic Migraine Warrior’s response to “You are Loved” by Josh Gordon, Day 27. Warrior said it so well and I agree with her. The song does make me feel this way. On this post I was sick so all I could feel was pain and wrote about images that popped into my head, but watching it again, it does make me feel this way.

This song immediately brought to mind my relationship with God. He is always there. He is my strength, my comfort, my guiding light.
As I listened further, I thought of relationships I’ve grown over the years. I’m blessed to have people in my life that will help me:

when my load feels too heavy,
when I feel unheard or misunderstood,
when I get lost in the pain,
when I feel the light in me has been blown out.

They are there to help lift me back up… to help me find hope. They remind me to look to my faith for grace, mercy, and hope. And, they hold onto hope, when I struggle to hold on myself. Their love, patience, and grace is beautiful and amazing.

I strive to be that kind of person, as well.
When you feel invisible, unheard, misunderstood… you are not alone. Reach out. You are loved!
I had fun blogging with all you all. This is the first time I have interacted with others who have chronic migraines. And I am proud of myself, I didn’t miss a day. Thank you to everyone who read any of my posts. I have learned a lot this past month from you. Thank you.
I am going to keep blogging and try to keep this up as a managing thing, pain therapist said to try to get into an online group long time ago but now I actually have time.

“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

You can find a list of the month’s blogging challenge prompts on ourAwareness Month page.

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Day 29 Migraine and Headache Awareness Month Blog Challenge: Define Hope

Today we are asked to describe what hope means and does not mean to us. I grew up watching Disney movies. We lived for the next one. And when we were caught watching something off limits we would be grounded to the Disney channel and Nick at Night. What I learned was to never give up hope and dreams can come true. I think a hope is an expectation for something to happen that is feasible now. A dream is something that you want, desperately want, but don’t see how it’s possible. Both can come true. I don’t think any thing is impossible because I’m possible-I’m in a tough situation but still holding on, The difference is that is a dream does not come true it is not disheartening.

I hope for a service dog.
I hope to be more functional.
I hope to live with Uni.
I hope my body gets use to the Botox.
I hope my family stays well.
I hope disability works out this time.

I dream about being pain free.
I dream about a cure.
I dream about sunlight.
I dream about playing hard with my nieces.
I dream about freedom from the side effects of migraine.
I dream about teaching again.

When I thought about the question the first thing that came to my mind was bibbidi bobbidi boo. Fairy Godmother tells the distraught Cinderella that she would not be there if she had lost all hope. Then she gives Cinderall’s everything Cinderella needs to make her dreams come true.Cinderella could have looked at everything Fairy Godmother gave her and ran away, to afraid of her stepmother, but she had the courage to go on.  And it made me think of a Korean drama Dream Knight, her mother says bibbidi bobbidi boo when she is sad about her illness.  Her dream of overcoming a genetic disorder will not come true, but she has hope that she can compete in a dance off and her determination and knights make it possible when those around her tell her its impossible.

The Migraine and He6a00d8341ce97953ef01b8d11f319c970c-800wiadache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

You can find a list of the month’s blogging challenge prompts on ourAwareness Month page

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Day 28 Migraine and Headache Awareness Month Blog Challenge:

6a00d8341ce97953ef01bb083cd91d970dI am bad off today, so we will see how this goes. I had a hard time with the quote, probably because of my head, so I started with Anne Lamott. Anne Lamott is a busy person, I don’t know a lot but she is a writer, progressive political activist, public speaker, novelist, uses particularism theory, and is a writing teacher. I have been on her Facebook and read some about her. She seems to value humor, honestly, natural order of chaos, and the beauty in the world. Those things are found in her writing, she writes about real people. I think it might be interesting to read a book of hers about a person like us. I have never read one of hers, but with her perspective that the details of the characters are more important then staying true to the genera formula, her perspective of what makes a great story, and her background might get closer to anything media has tried to do so far. I have never read one of her books, this is theory based on what others had said about her and her writings on Facebook.

I think she is describing the kind of hope that is waiting for you just around the corner. The extra boost that you get when act upon the decision you made. Your hopeful that it will work. So you decide to do it. Then your hopeful that it was the right thing to do. But hope gives you the courage to show up and to take each step once you get there. The song that pops into my head is “Just Around the Riverbend” from Disney’s Pocahontas, probably because I don’t feel good..

“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

You can find a list of the month’s blogging challenge prompts on ourAwareness Month page.

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Day 27 Migraine and Headache Awareness Month Blog Challenge: You are Loved

Today we watched the video and was asked, how does it make you feel? Which lyrics do you find especially inspiring?

I the song made me think of all the people who love me. My family, Uni, and friends.

This song reminded me of the times friends and family spoke up or explained things for me when I could not. The first memory that came to mind was the last time I got my hair cut. It hurts a lot when my hair is brushed or moves, and it hurts when my scalped is touched, and moving my head around makes me dizzy. it never goes well. Uni went with me to comfort and encourage the hair stylist. Yes, the hair stylist. While I was focusing and crying, Uni was explaining my condition, how my hair should be cut, and gossiping. The hairstylists did a wonderful job, she cut all of my hair. She also ended up with a ten dollar tip, because Uni said one more one and that a good tip, and I handed her a ten and said keep it. Uni went with because I promptly fell down. He said, “Silence will keep you I will break it for you. Everybody wants to be understood” That is exactly what she had done, I went by myself once. Disaster. I could not tell her that it was okay, keep on, looks great. She felt horrible, it wasn’t straight. she gave up, didn’t charge me, I tipped her. I think she was traumatized. I need the stylist to understand, I can’t let my hair grow to long, I need her/him. I tell them before they start. I need you, you are going to hurt me. But they don’t understand. When my people take me to get my hair cut they are hurt to see me in so much pain, but they show me love by being brave and focusing on the person who needs their help most, who is not me.

The song made me think of the times when I hide in my room with the lights off for long periods of time. My little sister will come and tell me of everything that has been going on because the world is stressing her out to much and she is so happy to have at least one of her four siblings to care enough not to leave her all along with Mom and Dad. (I used a run on because I think she could tell you a thirty minute telling of her life story without taking a breath and be fine.)  And she usually comes with food or water. My mom will come and sit on the edge of the bed and star and say I can tell you are in a lot of pain today just by looking at you. And she will tell me not to worry because she has explained to anyone who has asked about me everything so I should only have the questions of if I feel better, much easier question. When he said the bit about darkness blinding you I will shine brightly for you is when I had these thoughts.

The song also reminded of friends who can tell how well I am doing by how I say the word “okay” when I’m talking about how I’m doing. They understand even when I don’t really have the words or want to explain myself in crowds of people or in a state where I am having hard times remembering words.

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Day 26 Migraine and Headache Awareness Month Blog Challenge: Birth of Hope

Today we were asked to come up with our own topic, that was hard for me. J.R.R Tolkien wrote “Oft hope is born when all is forlorn.” I can not remember which “Lord Of the Ring” book and when I tried google-ing I got picture quotes. I think that is true for us. Our hopes and dreams were born the day, minute, second the pain started. Our hopes and dreams have changed every time the doctor said something new. All of our expectations in life and every thing we dearly desire are rooting in one thing, better quality of life. Our hopes and dreams were born in our moment of sorrow, agony, and disappointment. Hope is the shinning beauty found in our dark mess.

Illness and disability are two words in our society are flash red and give off loud beeps. It screams watch out this person over here is different, most likely an inconvenience or even a danger–warning. Kind of how I’m introduced to people by many. This is Crystal, she is a little sensitive to sound and light. Complete stranger will never see again, This is Crystal she is in pain all the time but she is a lot of fun when she is feeling well, it is really nice she can join us today. At that moment the pain started we became the pain, it owns us. We try to deny it but that is how society sees us.

We make people deal with the fact that they are healthy right now. That their current state of health is a privileged, not a given. We make them make sense of it. They think why are you sick and I’m not? There must be something wrong with you. Those who are sick are blamed for it, not matter what it is. It is your fault because of sin, lifestyle, fitness, or diet–You are immoral or irresponsible. If the other can not see the affliction or understand the illness it is worse. The boxes we are put in after that keep getting smaller and smaller. Are you sure you are up for it? We don’t want you to go. You can’t handle this. We assumed you… Sometimes they are right, but after a while people stop asking. All you all went to get coffee, i could have gone, they serve more then coffee. But what if you had gotten dizzy? That was the real thing. Do they want to be with someone who is going to make them look different. I would have made that group of girls look different, a pair of girls linking arms is pretty uncool in small cities. Most of my examples like that go back to misunderstanding about sexuality and public intoxication.

The social pressures put upon us and the people around us make it impossible for us to maintain our person version of a normal life. The migraines, head-pain, symptoms, medicine, doctors, stigma, social pressures come at us in brute force to caste us into the bog of eternal stench. But we call out for Hoggle anyway. We run into Firay and we find Hoggle. Hoggle is always right there, even when he doesn’t want to be. And even if Hoggle tried to run away a part of him was always there. We find hope in the most unlikely places, we run into it. But we wouldn’t be able to if we did not experience hardship first. Sara experienced her first hardship right before meeting Hoggle, but right before the journey began. Hope is first seen after that initial hardship. Then our relationship with hope grows. Sometimes it is rocky and sometimes we snuggle with hope. But that initial spark of hope cannot be ignited without experiencing the hardship. The one good thing that came out of that first moment, the moment that I met Migraine, is that shortly after I met Hope for Migraine.

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Day 25 Migraine and Headache Awareness Month Blog Challenge: My Hope

Today we are asked: “YOUR Hope,” What do you hope for most in your journey with Headaches or Migraines? Please share with us about what you hope for and why.

I think what I hope for the most is a better quality of life, I hope to not have to wonder to far from who I used to be. Right now it is hard to leave my room even. The world hurts and I can feel it move round most days. I hope that I am approved for an assistance dog. I think that would be wonderful and a great step in improving my quality of life. I could go about doing things with greater confidence and not have to be so concerned what if and my care taker wouldn’t have to stress as much when I am out. I hope to live with Uni. But for that I would need to be at a point where I could make a little help. I am reapplying for disability, we hare hoping that I have enough work points, last time that is why I was denied.

I hope that my step-grandmother has gotten off her high horse and doesn’t insist that I am being tormented by God at the big family reunion next month. I don’t understand why a retired nurse can’t understand neurological disorder. Or read your Bible God does not say these things pouring out of your mouth. I hope my niece does not pick up on her ramblings.

I hope that the neurologists will come up with a brilliant plan. Something new that might make things a little better. I hope that I can get through my eye exam. I need new glasses but the exam is hard to get through without getting to dizzy. I hope not to end up in the ER. I only go when I am screaming, so twice. I don’t know if that is right or not but I don’t like going to the doctor of any  kind more then I have to. And if I’m screaming it also means I won’t remember it very well. I do remember how much that hurts. How the screams make it hurt more but I didn’t know I was the one screaming and I couldn’t stop. Anything to make it stop. It was awful, I hope it never happens again.

I hope that everyday I can find something amusing. I hope that I will never forget how to smile and not bring down those around me. I hope that I will stay optimistic so that I can make it through each day and wake up every morning thinking about what I am capable of today, not what I’m missing out on today.

I miss who I used to be. Bright, playful, always up for anything. I was always busy and didn’t sleep more then 8 hours a day. I miss playing outside and studying scripts and working with kids. I was smarter and more creative. But I hope that I can stay true to me as much as possible. My Grandma told me to never forget that I am a lovable rascal and if this takes everything else away, I shouldn’t let it take away who I am at the core. I hope I can hold on to who I am.

The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association6a00d8341ce97953ef01b8d11f319c970c-800wi

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Day 24 Migraine and Headache Awareness Month Blog Challenge: Fight for Light

I like today’s prompt, Watch the Christina Aguilera video below and listen to the song lyrics. How have your Migraines or Headaches made you a fighter? But really, even if you know the song, watch the video before reading further.

The opening seconds is of a moth taking flight. A moth is a almost a butterfly, the biologically the main difference is that the antenna is a stub, not a ball. The other two differences is the moth is nocturnal and not so colorful. Moths are annoying little things that get into the house and butterflies flutter about in the garden. Moths are attracted to light. The theory is that they use the moon/star light to navigate in straight lines but when they see our artificial light they change course and are confused. Turn off the light and they disperse to follow their original path.. Keep this in mind.

First people we see unconventional ballerinas, they are not graceful, they are rigid are jerk. Their dance leads you to Aguilera trapped in a glass cage. It fits. It reminded me of the stigmas and the neat boxes people wanted me to fight into when I first got sick. The first time Aguilera sings the first line of the chorus she starts to break her cage. And that is a lot like what I had to do. Slowly learn about the new me and build up the courage to stand up for myself. But once your out of that box, it’s not over yet. You still live in the darkness of stigma, discrimination, fear, and slander. You still have to prove yourself everyday and it emotionally hurts and it tiring. I think the visuals used by  Aguilera capture that very well. By the end of the next chorus she casts off a little bit of the hardship she is caring and becomes a little more brighter.

The beginning of the third verse she is lite up and hung high. The moths are attracted to her and catching fire. Looking at the song from this angle made me think of the friends who left because they couldn’t handle it or the ones I told them to get lost because I didn’t need anyone who wanted to be able to say I am such a good person for hanging out with a sick person or the people who wanted to see me fail because I am sick. But I shined anyway. I became someone that haters were attracted to but I burned them.

I like metaphor, hardship/stigma to moths. Moths are attracted to light and they make the light they surround create shadows. But the light cannot hold resentment or ill will. The light chucks it up to bad manners and keeps up shining brightly trying to create the least amount of shadows possible. Haters make up stronger, teach us new lessens, and makes opportunities to create awareness moments. Secretly sometimes we do want to punch people, but that is also part of the fight. The fight against physical, emotional, and psychological pain and the fight against side effects of our medicine. (My worst is sudden outbursts of rage.)

The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”6a00d8341ce97953ef01b8d11f319c970c-800wi

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Day 23 MHAM Blogging Challenge: Hope for a Cure

Today’s prompt is Do you have hope that a cure will be found for your Headache disorder? Tell us about your hope To be cured it means you have gone without treatment for 5 years without having a migraine of any intensity or form or symptoms, That would mean migraine free for five years. .I do not hope for a cure. Pain is the least funded research. It is also ignored by doctors. When medical professionals go straight to drug seeking or straight to complaining that pain scales are subjective there is no hope.(I have nurse and EMT friends) When the ratio of pain doctors and patients are this bad, as a pain patient there is only one headache specialist and one pain treatment center. People mocked me for driving over an hour to see my doctor when there are a lot of neurologists in town.

I hope for things that are attainable. I hope for better medicine.  I hope that I do not grow immune to the Botox. I hope that spreading awareness will help pain research get the funding they need and the stigma attached to us lessened.

I they do come upon a cure I would be surprised and tons of happiness. It does not mean I do not think it is wholly impossible. I don’t expect it to happen. If I did I think the let down would be heartbreaking as an old lady. Old ladies with broken hearts are the saddest thing I’ve ever seen. I want to die a happy old lady pulling pranks on the people who visit me and sending cards to people to those who don’t that say things like “Fool! I shall send my army of space monkey after you! Beware.”

The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

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Day 22 Migraine and Headache Awareness Month Blog Challenge: “Oh My Friend”

Today’s prompt is write about how friendship helps us maintain our hope. I have wrote a lot about this through out the challenge. So I am going to let one of my favorite bands say it in a very awesome way for me this time. Here are the lyrics,

6a00d8341ce97953ef01b7c798b3cc970b

Big Bang’s “Oh My Friend” The vidoe is subtitled but I also put the lyrics below.

Lyrics provided by http://colorcodedlyrics.com/2012/02/big_bang_-_oh_my_friend_cc_lyrics

If the world makes you sad,
Say my name whenever and wherever,
I am 119 emergency, for you only
I’m only 5 minutes away, yeah yeah

Your sorrow that you feel isn’t sorrow
It’s a rope that bonded us together
Expect me to say anything without crying
I’ll give you a hug silently

I’ll get wet in rain for you
Run without a stop
Go through a rough wind yeah
Your heavy burden, dark shadow
I’ll block then all now

OH MY FRIEND! OH MY FRIEND!
I will be your friend forever,
OH MY FRIEND! OH MY FRIEND!
Only you can make me alive,
OH MY FRIEND! OH MY FRIEND!
I will become a tree behind you silently,
OH MY FRIEND! OH MY FRIEND! MY FRIEND…
I love you dear friend

Let’s Rock & Roll, man I don’t control
Close your eyes and open your heart (Love& Peace)
Hope you dreamed, trust me,
tells only the true without lies
Walk straight, limp at least once,
mistakes can happen to anyone
Step on a failure and get up,
goodbye to a wound that aches

C’mon! Hold my hand and let’s go,
let’s look for a lost dream again
Let’s fly together, brush up dusts,
let’s go together, a person next to you as well
We can’t see an end but the future is bright,
there are many chances because you are young
Let’s love each other, scream louder, FREEDOM!

OH MY FRIEND! OH MY FRIEND!
I will be your friend forever,
OH MY FRIEND! OH MY FRIEND!
Only you can make me alive,
OH MY FRIEND! OH MY FRIEND!
I will become a tree behind you silently,
OH MY FRIEND! OH MY FRIEND! MY FRIEND…
I love you dear friend

Yea, yea, yea
Here we go!

Leave from bored daily life as you dreamed
(AS YOU DREAMED!)
Run towards the dream, dear
(RUN TOWARDS THE DREAM!)
Go away, go away, let’s go away baby…
Whoa ho, whoa.. oh oh

Big Bang, No brain, haha once again
(YEAAAAAH!) Everybody RUN!

OH MY FRIEND! OH MY FRIEND!
I will be your friend forever,
OH MY FRIEND! OH MY FRIEND!
Only you can make me alive,
OH MY FRIEND! OH MY FRIEND!
I will become a tree behind you silently,
OH MY FRIEND! OH MY FRIEND! MY FRIEND…
I love you dear friend

6a00d8341ce97953ef01b8d11f319c970c-800wiThe Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.

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Day 21 Migraine and Headache Awareness Month Blog Challenge: Be Brave, Daring, and True

I am late today because I have been busy being lazy with my Daddy. I would like to start today with note about my Dad, because he is awesome. When he starts a new church he always starts with me, if I get a call I’m out of here. Even if it something you may think is small, if my wife calls it’s not. It could be in the middle of services and he would be on the road. He  doesn’t take any rudeness about his full grown baby girl living at home and he doesn’t feel like he should have to explain it. He already told his new church that when I get assistance dog is going to be gone two weeks and the DS confirmed it is confirmed sick leave. He finds little ways to make things better, like music before bed and paying attention for family time opportunities. Every time I wake up he asks how I am and then smiles, nods his head and tells me something he finds hilarious. He is awesome at being a pain patient daddy and that is how he gives me hope.

Today’s prompt is to watch Sara Barielles’ “Brave” music video and listen to the lyrics. Then tell us how standing up for ourselves gives us hope. I had never listened to this song before and I like it a lot. Being brave by not hiding your pain, not putting up your walls. Showing who we really are is something that is really hard, putting on a smile can be easier then letting people see the pain. It wears me out and it feels fake but I do it really well. People can’t tell I’m in pain when I feel like screaming, that’s talent we show off. It is the worse insult when we are told that we are not pulling that off well enough, I know I have been told I need to work on that. It was on a day I felt like screaming and she told me I shouldn’t let the students see that I have a headache. I asked her how much pain I looked like I was in, she said a bit of a headache. Just showing a tiny bit of what we are feeling is seen as weakness. I like that the song encourages us to say it, to let others see what we are going through. That is where bravery is found. We are brave when we challenge our foes, our foes are those who beat us down because we don’t look sick or think we should toughen up. Why do we need to build a castle to make them feel safe? Let’s be brave and let loose the dragon. Let our needs and words burn them for once. We can stretch out our wings and sour into the sunlight and be ourselves. Being brave is putting us out there as our whole selves. The pain is part of us. To be ourselves we have to show people our pain. It makes us daring and brave to do something so dangerous. This song gives me hope because it inspires me to speak my mind when challenged about my pain and reaffirms that I have a right to defend my pain management needs.

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