Category Archives: friendship

“I Have No One” Responding to the Cries of the Sick – Chronically Whole

An awesome article by blogger Stacey Philpot about reaching the importance of that person(s) who treat you like a person and reaching out to those that need a cheering section.

I sat with legs crisscrossed applesauce, eating a bowl of honeycombs with a shameful ferocity before preschool pick-up would end these heavenly moments of silence. Skimming the cable guide’s offerings, I settled on the noonday news. Instantly, an invisible hand was reaching from the television, thrusting open my chest and extracting my heart with skillful precision. Instead of a red

Source: “I Have No One” Responding to the Cries of the Sick – Chronically Whole

Leave a comment

Filed under family, friendship, reblog

Epilepsy Awareness: Anniversaries

January 12.2014 is a very important date. It is the day after my last seizure. I have been seizure free for exactly one year and eleven months today (November 12, 2015).

I see a lot of pictures of people holding signs on the big day “#years Seizure Free” or even “#months Seizure Free,” Both are amazing celebrations. I remember celebrating by the week. Then two weeks. The first time I hit the two month was amazing. If you would have told me then that I would be 23 months free I would have laughed at you. But here I am with my hopes set high and putting trust the Lord that I will be giving Uni an awesome early birthday present…2 years, oh yea baby. But first lets get through Thanksgiving, then Christmas.

Celebrating victories, big and small, is important because it reminds us of how bad it was, how hard we worked to get where we are, and gives us hope to look forward to more victories. With epilepsy we are celebrating a safer life. A life where we have not scared the wits out of anyone in a period of time. A period of time where the people around us has seen us as human, not someone who has to be constantly watched like we are going to jump out and eat them, whahaha. The period of time that no one has come to ask if we are contagious or confirm that we do in fact have a doctor.  We are all like Woot!

I don’t know what anniversaries are like for migraines or pain free. I haven’t experienced it. The blogs I follow are informational and do not post many personal story articles.

It takes a long time to find the right balance of medicine and life style. In this respect it is very much like treating migraines. The daily preventive pain medicine is also the same as epilepsy medicine. That is weird. But they are both neurological disorders with similar causes so it makes sense at the same time. The brain is a mysterious place my friend.

To celebrate today, I did not fall down. Big victory when vertigo comes to play and flames of Hell scorch your brain. I watched a favorite movie with double vision (two Mr. Darcys wasn’t so bad–bbc version), and played with Karma (the silly-mannered dog). Mom made my favorite pork. It was a nice day.

Leave a comment

Filed under awareness, epilepsy, friendship

Epilepsy Awareness: First Aid

What to do if someone has a seizure isn’t talked about. Seizures in general aren’t talked about, I hadn’t heard the word “epilepsy” until the doctor said it. What is bad about this is that if you do something wrong you or the person seizing can get hurt. If you stick your finger in their mouth it could get bit off and the person could choke on it. There is a thing called a seizure spoon, very bad. If you try to hold their hand it could be like holding the hand of a pregnant lady going into labor.

This poster is the perfect example of what to do. To do all of this in the typical 30 second seizure is impossible. Seizures can last up to 2 minutes, those you do have time.

First, stay calm. The last thing this situation needs is panic.

The most important thing is that you get the person into the rescue position and help them stay that way. Vomiting while seizing happens, but if the person is on their side they won’t drown. The rescue position also hurts less and helps result in less injury. Never restrain or hold down, that hurts a lot. Put one hand near the knees and the other near shoulder one side of the body. Pull and push little bit to help the person stay off their tummy and back. A sister sits by my tummy and puts her hand on the back of my knees and back of my shoulder.

Second most important thing to do is to move everything that the person could hurt themselves on. Clutter, school bags, furniture. Loosen tight clothing, like a tie or scarf. Putting something under the head is important, especially if you notice that they are banging their head on the floor repeatedly. Time the seizure. If the seizure last more the five minutes, or past your comfort level, call 911. One of the first things they will ask is how long is the seizure. Looking for a medical tag can wait. If you call 911 they will need it. Chances are they might not have one.

When the person wakes up give them quiz them. 1. Name 2. President 3. Where are you 4. add two plus three. If they can get these right and their is no injury they are probably ok unless they have never had a seizure before. So if you don’t know ask. If not call 911. Then ask if their is someone you can call or if there is anything you can do. If you didn’t call 911 get them a ride or offer a ride home.

When to call 911: When you are scared or freeze. If you can’t handle the situation. Think about everyone’s safety and the best way for everyone to remain calm. Help is on it’s way is a phrase that can calm and reassure people. If the person seriously injures themselves during the fall and the attack make the call asap and focus on helping the person not hurting themselves again. If a person is convulsing for over five minutes there is something seriously wrong. If the recovery is taking longer then you think it should or the person has stopped shaking but didn’t wake up it is time to make the call. If they have more then one seizure it is not good. If you make the call and the person does not want to go they don’t have to. They can sign a form. Do not worry about whether or not you think the person would want you to call or not once it gets to one of these points.

If you have an epileptic friend have a talk about their needs and presences. I do not need to go the ER unless I don’t start breathing again or one of those biggies. If it is normal wonder about for a while and then fall into and convulse for under two to three minutes and can pass the quiz, I am golden and ready for a long nap.

Leave a comment

Filed under awareness, challenge 2015, epilepsy, friendship

Epilespy Awareness: Hello Mr. Floor.

IMG_41206234691226

I formed a strong bond with the floor, it would have been nice if we met under different circumstances. We have shared my most vulnerable moments. Mr Floor is very understanding about how sensitive I am about those times. It does not matter it I hurt the floor, throw up, or pee all over it. It matters not that I take pleasure in avoiding him. He takes no offence. He is the friend that knows he is being walked all over and being taken advantage of. He takes no offence. He knows his purpose and is happy to fulfill it. All he asks for in return is that you tend to his hygienic needs. I think everyone prefers a clean friend anyway, it is not an unreasonable request. Thank you Mr Floor. Thank you for being there for the scariest moments of my life and not judge me for it. Thank you for being a trusted friend, I know that you will always be there for me I should fall.

This meme is the only place I have seen the floor painted in a positive light. The scariest moment is that moment you wake up and you know nothing, temporary amnesia, it last just a few minutes. For a few minutes the only thing you know is what kind of floor you are on and what kind of decor is on the walls. Not your name or who the others around you are. You are surrounded by strangers. Then you realize that however long you were out you have to trust that these strangers did what was best for you. That they took care of you. That did not do anything shady or plan out criminal to you. You have no idea. Slowly things come back. You know your name, where you are, those people… You still have no idea what happened between now and the last thing you remember. You have to trust that when they fill in the pieces they are being truthful. Sometimes people refuse to tell you, they refuse to tell you because they think you are lying, that you do know what happened. Sometimes they think it best you don’t know.

I am told by the doctor, family, other epileptics, bloggers that the scariest part is that you could be seriously injured or die. Not for me. It is the amnesia. It is why I do not going places without someone I trust. It is why the floor is a good friend, it doesn’t lie and it answers a few questions without fail: did I throw up, did I pee myself, how hard was the surface.

There are two ways to fall. The awe that smarted and the crap that hurt way. That kind of hurt is a committed loose fall. A dizzy person can do this. Commit to the fall. Relax you muscles, start with your feet and work your way up. You will fall more vertically, gracefully. We tend to fall the crap that hurt, it is the only way you can fall in a seizure. If you put it in slow motion it would be about like this. The middle tenses first, then your neck, then you legs. Lastly the feet. The person falls horizontally, almost looks like a straight line. Sometimes you can hear the impact. This is called a drop seizure. The drop can be different serviettes, it depends on how hard you convulse. This is why you will see people wear helmets all day. Out of control sever convulsions are dangerous. A seizure helmet looks like a football helmet and is worn all of the time to protect their head from the fall.

Something epileptics and migrainers share is a relationship with the floor. I choose to appreciate the floor. I appreciate carpeted and padded floors the most. It causes me pain and bruises me. But it does not mock or discriminate and  it opens a truthful line of communication.

Leave a comment

Filed under awareness, epilepsy, friendship

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.

Leave a comment

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

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

Leave a comment

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

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.

Leave a comment

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

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.”

Leave a comment

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

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.

Leave a comment

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

MHAM Blogging Challenge day 10: Darkest hour

.The topic today is to write about ways you find hope on dark days. At first I read this wrong. Dark days, like when the sun does not shine, ar6a00d8341ce97953ef01b8d11f319c970c-800wie awesome and give me hope in themselves. A boost of “yes there can be days where the outdoors does not wage war.” But that is why I reread these topics, my brain is made of gray fluff and other destructive things.

What gives me hope on awful migraine days? I narrowed it down to three things, the Lord, those who care about me, and PJs. I have faith and trust in the Lord. Without his strength and comfort I don’t thing I could do this. I also have faith in his promises and believe that He will guide me through this and provide me with what I need. It gives me htumblr_ks8thbKKhP1qa7wgdo1_400ope that I know for sure that I will always have what I need to survive this. My friends and family gives me hope because I know they will always be their for me, encourage me, love me, and make sure I can keep treading water. My family gives me hope because they have watched me change from a bright playful youth into this but they are trying their hardest to be brave and upbeat. I know it hurts them to see me like this, it breaks my heart, but knowing we area in this together brings us hope.

My PJs are the best things ever, thank you India for inventing them. Some are soft and cozy, others have pockets, some are fun patterns, and some are stolen from my siblings drawers. I can snuggle in them all day and the coziness gives me comfort. Sometimes I cuddle with my twin brother’s teddy bear or blanket (he has not returned to claim them). Should we thank Teddy Roosevelt for the teddy bear? I don’t remember what it feels like not to have a headache. But I do remember when we got that set of teddies, fought over blankets, and refused to get out of our PJs because new clothes were cold. New clothes are cold, not fun, nor neary as soft. Why should I leave my cozier status or a not so comfortable one?

For more blog challenge reads go to: http://www.ahmablog.com/2015/06/migraine-headache-blog-challenge-10.html#.VXiWHvlVhBd

PJ girl pic:http://imgfave.com/view/536494

Leave a comment

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