Tag Archives: hope

Epilespy Awareness Day 7: Ribbon

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What does your ribbon look like? We usually see it crafted into a butterfly or given some type of bling. I thought about how the ribbon is more then an awareness object. When we look at the ribbon we think of our loss, struggles, pain, and brokenness. But we also get a sense of togetherness, courage, and strength. It turns a survivor into a warrior. The most important thing about the awareness ribbon is that it is a symbol of hope.

Hope. Romans 8:24-25
24 For in this hope (of everlasting life) we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.”

I cannot hope to be healed if I’m already healed. I can’t hope for a cure if we have one. I can’t hope to be without pain if I am pain free. Hope inspires people. Seeing hope in others is inspiring. We wouldn’t have any epileptic medicine if hope hadn’t inspired someone. Once we have a cure to epilepsy and migraines, we will hope for an affordable cure. We need hope. To keep hope alive we need patience. We learn patience and we can encourage each other to never give up. 

Why did I draw it that way? I am a Christian.
I believe that I should take all my worries and pains to Christ, as the saying goes “take it to the cross.” That is why I started the ribbon faded and torn on the right. I believe Christ will take everything and make it new again. That is why as the ribbon falls to the front of the cross the color changes to just lavender and then ends is a smooth cut. The ribbon is not tied like the traditional ribbon so that it could blow away, Christ is capable of healing-illness and brokenness disappears. All things are possible through Him.

 

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PAM16:18 Pain Journey, How did it lead you to become a PAM advocate?

Today’s challenge is to video yourself describing your pain journey and what lead you to advocacy. I think I’m in to much pain to travel that far out of my comfort zone. But I can still share although I don’t think the question is not as simple as it seems.

March 2005 I had my first migraine. It caused me to pass out. Every day following I had a migraine and within a week I was in constant pain. The pain worsened and I still have the same headache. I think it was September 2005 I had my first seizure. The sunlight hit me and it triggered the worse pain I had ever felt and I dropped in front of the library.

When I was in kindergarten it bothered me that I didn’t know God’s plan for my life. One day I decided it must be to make people smile, if its not fun for someone it can’t be within God’s plan for me. All I could see in every bible story was God wanting or finding pleasure or having fun. The only logical conclusion was that is what he wants for his people. It stuck. Everything I did was to that purpose. Even when I caused mischief I did things that made my male parental units laugh. I was a happy person who made others happy just being around me. I was optimistic, gullible, helped others see the good in bad situations, befriended the “wrong” people even though I got bullied because of it. My Grandpa Fred called me Giggle Fritz. My Grandma called me a rascal with good intentions. I was full of jokes and antidotes. I was one of those people others didn’t like because I smiled to much.

Then the pain changed me. I stopped giggling then laughing then smiling. I became someone who had to search for the silver lining. Suddenly I was having to comfort people because I was scaring them and bringing them sadness. It was devastating. My gramma became angry and disappointed in me and called me a failure. For the first time she was glad Grandpa Fred isn’t here to see me like this. I broke my Grandma’s heart. She felt like she failed me because she couldn’t heal me and I was loosing me and all my dreams. My youngest sister doesn’t remember healthy/happy me, she was 4 when it started. I’m not as smart. I hurt all the people I love. Lost the majority of friends my own age. The only thing I could do for my people was to get better, protect them, focus on staying positive, remind myself “I can do this” everyday, practice smiling and laughing, and to never stop trying to accomplish something. I tried my hardest. Then the doctor told me it was impossible to get better, I shouldn’t, I can’t, to not get my hopes up to high,pain management, vigilance, signs of depression, and don’t isolate myself. Everything is in shambles. My eight year old self would be shocked and disappointed. I can hear my Grandpa Fred, “Why so serious Giggle Fritz?”

Something unexpected happened. I broke down in front of Uni and she got angry then sad. I got a talking to. Since I started having seizures random people would tell me the strangest things and ask me “stupid questions” and I blew it off or got angry.  I do what I have to, I can do it, and I’ll show you  (irresponsible me said I do what I want) but that is not what other people see. Uni says I’m useful because I make her laugh and I’m the smartest person she knows. Professors and peers saw a good and determined student. I’ve been called strong, courageous, brave, inspiring, headstrong, insightful, and other adjectives I would never ascribe myself. Questions like “how do you do it” “why haven’t you killed yourself” “how do you smile” and “where is God” are not stupid or intentionally hurtful questions. It is honest curiosity. It is proof I haven’t lost hope or my optimism. That living in Hell doesn’t have to make you miserable or bitter. That even though it looked like I lost my purpose I hadn’t, it looks different. A person can miss or not understand the impact they are having on the lives of the people around them.

I didn’t decide to become an advocate, it just happened gradually. I became an advocate when people start seeing what they think is the impossible being accomplished by someone who answers their questions and does their best to explain what the person is witnessing. I became an advocate for people in pain and people with seizures on accident. I didn’t realize that that was what I was doing. I was just answering annoying questions with patience. Then I realized I could try to educate people who refused to understand the impact of these conditions have on a persons life through Facebook. I read that I had to be an advocate for myself. I tried to explain to people why their preconceived notions are wrong and how their actions do physically and emotionally hurt people.

I started this blog a year ago. I read blogs trying to learn from people in pain. The doctor had a talk with me about isolation and about sharing my health issues with someone. I had a random thought. I could try a blog. If one post helped one person deal, learn, or smile it would be worth it. Then I saw a migraine blog challenge and I ended up here. I had fun with that blog challenge. Every relevant to me awareness season I search for a challenge and that is how I found PAM and became an advocate for PAM last year.

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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 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,

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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 20 Migraine and Headache Awareness Month Blog Challenge: Peanut Gallery

tumblr_noxryimC0R1tg0mjoo1_500Today’s prompt is “Who do you know who has any form of headache or migraine whom you look to as a role model for inspiring hope and never giving up? How do they inspire you?” I don’t know if I have a person who fits all of those criteria. When I first got sick I had no idea what was going on and I would describe it and no one around me nor did my doctors have a clue. The doctor resorted to she’s crazy, physiologists said its neurological, and my family tried to get me the best care possible. There has always been the “when you get better” language when anyone talks about me. To deal we have a mission and set goals. Mom takes me with when I start to get stir crazy even though we both know it’s not such a great idea. We answer questions about disabling migraines the best we can and then say we have a mission. I have a peanut gallery that inspires me to never give up hope. My family is always right there with encouragement and assurance that we can handle whatever is thrown our way. God knows our needs so we got this under control. Even my seven year old niece is right there. She introduces me as her awesome auntie who’s head is very sick so we have to play very quietly. She sent me headache medicine last week, her favorite chocolate. They inspire me through their determination to make everything just a little bit easier for me. They are why even though I might not know what day it is every time I wake up, I can greet it with hope and know that doing the best I can is enough.

My grandma lived a long way away so I only got to see her a few times a year and neither of us talked on the phone well. I looked up to her and she was my role model for how to deal with this. How to not be fine but be okay. To be able to say “I’m okay” because I am well enough that you don’t have to worry about me. She taught me skills I needed and how to pay attention to my body. She was rooting for me, before she died I would not hesitate to make this post about her. If I needed a burst of inspiration I can’t call her up, and say “parental unit, it hurts.” and she would say “I am not your parental unit, what ever happened to Grandma? Go to sleep.” And she would hang up one me. But now I don’t have anyone who I can turn to quite like that who has migraines frequently. 6a00d8341ce97953ef01b8d11f319c970c-800wi

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

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Day 17 Migraine and Headache Awareness Month Blog Challenge: Fawkes

Today’s topic is: “Hope rises like a phoenix:”Put yourself in the place of the phoenix, and describe your rise from the ashes. I do not know how to ansrwere this. My theatre trained self knows to walk in another’s shoes you have to understand that person. I am going to take a moment to explain why a phoenix. I first  thought Fawkes, Dumbledore’s phoenix in the Harry Potter series. J.K Rolling created an incredible creature, to learn all about them go here: http://harrypotter.wikia.com/wiki/Phoenix

The traits that are inspiring are its tears has healing powers, it’s loyalty, the power of it’s song, and Burning Day. Fawkes is very loyal to Dumbledore, it is the nature of a phoenix. Because of Fawkes’s loyalty he cannot ignore the cries of help from those who need him. That is why Fawkes is there to help Harry in the Chamber and whisks Dumbledore away. Fawkes tears are healing, it can bring someone back from the brink of death. When a phoenix sings, its song strengthens the courage of the brave and instills fear in the heart of those doing evil. Lastly, we see Fawkes on a Burning Day. We see F6a00d8341ce97953ef01bb083c67b4970d-800wiawkes looking like an old dirty turkey when he suddenly burst into flames. After the flames die down there only the ashes are left, but then a baby peeks out and shakes some ash off. Fawkes was born again. It was still Fawkes, but he had been born again about to grow into a magnificent creature once again..

I like the analogy to hope. Hope heals a broken heart. Hope is loyal to us and strengthens us, and it gives us courage when we are afraid. We amaze jerks with our optimism and hopeful outlook. Hope saved us in the beginning, when we feel lost, and in can save us in emergencies. Hope is also a beautiful and amazing thing just like a phoenix is awesome.

The first time I was like a phoenix was in 2005. I excelled in school. I was very active in church and loved working with the kids. I knew my theology inside and out and I could tell you where things were in the Bible. I was a  theatre major with a minor in religion. I wanted to join a mission troupe. Travel around doing vbs/plays and build houses/farming in South America. I was building sets, working with lighting, directing, creating skits, and acting. I loved playing outside and was always very active. I remember the day my headache began, it was a week before my 19th birthday. It was the worse pain I ever felt, a group of us were doing homework in my boyfriends dorm room. I passed out. Everyone thought I had just fell asleep so they let me sleep. I woke up and still had it. I had gotten the lead in the spring play, a freshman had never gotten a lead before. I had to turn it down and change my major. I lost the dream I had since I was a freshman in high school  and my full ride scholarship. The religion department did not have a scholarship.. At the same time I was discovering that topomax and depocote are awful and learning words like “psychosomatic” and “drug seeking” and “idiopathic.” And “does that means your an idiot?” is the wrong response or “yes it is all in my head that is why am here” can also be a bad response. I was black listed neurologist vill. I am idle, don’t go outside, socializing is hard, church is not as fun, and my memory is not good So before class, while laughing about “anorexia” being added to my file, the professor of my sociology class offered me a scholarship if I changed to sociology. I was enjoying my sociology class so I hopped on board. It turns out that I love sociology. A few weeks later my family doctor hooked me up with the campus psychologist and I signed the papers for them to talk to each other. Uni became a bigger part of my life that fall, as I got sicker she took more care of me. I started to actually cope and get myself together, to helped others understand and not be afraid, I am loyal and there for my caretakers when they need courage and help stave off the jerks. I am not the same person as I was before. But I am still me. It is just like Fawkes. Same face and loyalties. I still have the desire to inspire hope,  heal, encourage my keepers and ward off those who would harm us. But after my Burning Day I changed my activities, hopes, and dreams.

I think the second time would be after I graduated graduate school. When I was told I could not survive and learned that I can’t hold a job in my current state. That I am indeed handicapped and am not going to get better. I think I am still working on this one but I am making progress.

I think that is part of what makes the analogy to a phoenix work. We never know what hardship will happen, something new can come around an6a00d8341ce97953ef01b8d11f319c970c-800wid crush or shatter our dreams. We will have to make new ones. But we are survivors. We are beautiful and will come out of every dark situation even more beautiful. We will keep on going longer than anyone else.

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

To find a list of other bloggers responses go to: http://www.ahmablog.com/2015/06/migraine-headache-blog-challenge-17.html#.VYHfavlVhBc

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MHAM Blogging Challenge Day 13: Don’t stop believing

Today’s topic is to write about the things in nature that brings hope and why. I was pondering this eating chocolate and opening my mail. What do I get? A letter from the Arbor Foundation with cards that have these quotes on them: Lucy Larcom said, “He who plants a tree plants hope.” and William Shakespeare wrote “One touch of nature makes the whole world kin.”  And then it was 11 am and I had to take my medicine with water.

6a00d8341ce97953ef01b8d11f319c970c-800wiThe Rainforest has always been a ray of hope. It reminds me of fairy tales and a place where anything can come true if you wish upon a star. Very enchanted forest or the fairy Godmother or “The Godmother”. It makes my heart flutter like I can do anything, even out smart a dragon. Like the “Paper Bag Princess.” The Rainforest is also the only place that cocoa beans can grow, I need chocolate it is the only comfort food the doctor hasn’t completely taken away and it is the only thing that can neutralize that copper taste (there is science around it).

I think hope is a lot like a tree. You have to plant just a little bit into a person. Get the idea that hope is possible in order for it to grow into real hope, a stick into a trunk. With love and care a persons hope will grow until they can’t hold it in anymore and they have to share it. The hope they share is brighter then the hope that was planted. It is brighter because now they fully believe that they can move overcome obstacles and teach others how. They gain self confidence. That is like the oxygen that trees put out for us to breath. We need hopeful people to teach us and give us strength. Hopeful people need those seeking hope to give them the hope that they can use this hardship for good. Hopeful people need hopeful people to share their hope to stay strong. Just like trees need us and others trees. We need trees.

Nature is full of community. You see it at every bit of nature you look at. We are outcasts and tend to loose parts of out social circles. But we can always create a new one. Nature reminds us that we need community, that people are social beings, just like nature needs every minute piece to stay beautiful and healthy. There is why nature brings hope: we can stay in community, we can do it, we are needed, and we are beautiful.

Bodies of water are interesting. They look calm and peaceful and even happy on the surface. But take a dive and its very busy, colorful, diverse, and dangerous. Sound familiar? A happy face but if you look past the smile you see a disaster area? Water personalities tend to be emotional, deep, nurturing, sympathetic, empathetic, imaginative and intuitive; but they can also be moody, sentimental, sensitive, escapist, irrational. Once again two completely things in one thing, personality. If we didn’t have control of ourselves II think people would think we had bipolar or worse. Before I got myself together some of my friends thought I was suicidal. I wan’t, I was learning how to cope. It gives me hope because I can cope, I can pull this off, I can help those around me. That is pretty awesome.

Side note, when it looks unedited its it because I am seeing double, like today. But I am determined not to miss a day.

You can read the children’s story the “Paper Bag Princess” here:

http://mrkwon.weebly.com/uploads/1/3/2/1/13216665/the_paper_bag_princess1.pdf

The Godmother by  Elizabeth Ann Scarborough

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MHAM Blogging Challenge Day 12: Who Let the Girls Out

Today’s topic is to write about how the quote “The birds of hope are everywhere, hear them sing.” My first thought: ornithophobia. Birds make high pitched loud noises. Birds are pain and they scary. But then I thought Birds+slang=women. And I can get behind that. So first, we must make a new image. How about a girl group being silly? Girls Generation, they were on a late night show.  I got the picture of the group from https://youtu.be/blnf3b2R3y8. birds of hope There are mostly women in my life. Each one of those women care for me and are there for me. All I have to do is reach out anytime I am feeling lost or doomed. When I reach out one of those ladies will respond with love and remind me how to be hopeful, they make me hear hope. There are also famous women we can look up to that bring us hope, musicians, advocates, Nightingale, writers, Hermine, actresses, writers. It is part of Girl Power. Girl Power and sisterhood are suppose to bring us hope. They are our diverse cheer squad. My mom sang us to sleep every night until my youngest sister was about eight. At about the same time she stopped singing lullabies the organists at church started teaching me worship songs she sang as a kid. We always sang full blast to the radio. Us girls still randomly just start singing songs around the house. Music is a way we express ourselves. When I am feeling down, I look at a sister and burst out a line like “LET’s get down to business” and she will belt out right back “to DEFEAT the HUNS!” And then after that song she, or the group of us, keeps going until I feel better. Lets listen to Girls Generation sing “Tinkerbell” I think this song is hopeful because it’s about a person who wants to stay by your side no matter what hardships that are ahead, someone who wants to give you hope that you can accomplish goals, and it is someone who chooses you knowing that you are in an impossible situation. I chose this video because it points out who is singing.

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

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MHAM Awareness Challenge Day 11: Giving other hope

Today’s topic is how do we give others hope. I see three categories of others, others like me, people who try, and idiots. Each group have unique needs based what see. We need things like encouragement, understanding, emotional support, and help with physical needs.

I do not know anyone like me, someone who is barely tolerable pain every second of everyday or someone who had to learn the d6a00d8341ce97953ef01b8d11f319c970c-800wiifference  between headache and migraine by the way it hurts, not the intensity The closest is my have migraines sisters have maybe three times a year and my mom has silent migraines with her periods. I give them words of comfort, it will be okay. It is okay to talk to me about it.. Pain sucks. It will stop. What I have is rare, 3% of headache world. Do you need anything? And my youngest sister has nightmares of the world suddenly having no food during migraines, so I feed her.

My family, Uni, friends, and some other people we know really do try. One thing I found is information about my condition and descriptions about what it’s like can help them. One one thing they want to do is help and they say it with I hope you can get better or pray for you to get well. If they can understand that what I need is encouragement and help walking it brightens them up. Like my sewing group was going to take a break during the summer, but when they realized that it is one of the only things I can usually manage, they were excited because they could help and had been helping just by being there. I changed their expectations and by doing that it made it easier to hope. Don’t hope for me to get better, hope that I get through today.

Those idiots, imbeciles who say crap like “You don’t look sick” Your too young” “Are you really seeing a doctor” “You can’t be in that much pain” “drug seeker” “God is punishing you” “Have you tried some over the counter drug” “Your taking to much medicine”  Those morons. I think I have a responsibility to them to help them. We start with the simplistic information that it is a genetic, neurological disorder, a disability. That they are buying into a stigma, a prejudice, against people who are unwell because it is making them face the fact that wellness is a temporary physically state that is precious and not taken for granted. That one day their body will fail them and become useless, just like mine. Sick people are people too. If God wants me this way, then okay, but the bible says not to judge people. No, miracles don’t work that way. Read your bible, please. I give them the hope of proving me wrong. But I win because they are wrong. And that makes me smile.

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Filed under awareness, challenge 2015, friendship, migraine/headache