Tag Archives: friendship

We need help.

Sometimes we need help.

We are social beings. Our brains are hardwired to need people. We need family, friends, clergy, and loved ones. We need people in our lives that can build us up and people who can lift our spirits.

We also need to distance ourselves from toxic people. These people tell us lies about our illnesses, the people who care about us, and about our character. Toxic people tare us down and make us feel sad, lonely, unloved, and like we are burdens to the people we loves. These are all lies.

The people who love us do not see us as burdens. We are loved. We are strong. We inspire people. We build people up. We teach others about perseverance. We are doing the best we can. We are people doing something extraordinary. We function while suffering, we are doing the impossible. The people who love us see an exceptional person.

Sometimes we need help. We need to reach out to those who support us. Our family, friends, loved ones, support groups, and others going through what you are. And sometimes we need to reach out to psychologists, talk therapy, the E.R. The E.R. will admit you to the psychiatric ward and that’s OK. If you are psychotic, very depressed, or having suicidal thoughts it is where you need to be. Personal care is important. Part of that is reaching out for help from whomever you feel/think will give you the bests help or advice.

Sometimes you need help and that is normal. It’s okay. Take care of yourself.


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Filed under depression, Doctor, mental health, Personal care

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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Filed under migraine/headache, PAM

We Exchange Words

I play Words With Friends. My sister asked me if I played earlier:

Little Sis: These are crap letters.
Sis: Do you have the Words App?
Me: Why yes I do…I feel it a great way to exchange words with people. Even strangers since they added the play with random people feature.
Sis: Oh, so you use it to talk with people with the chat and keep connected with friends as a social media.
Me: It is a great avenue to exchange words.
Sis: That’s great!
Little Sis: It is a great place to exchange words…like Qintar. She breaks out in laughter.
Sis: Oh, playing scrabble together is not communicating or being social. I should call your doctor, tell him you live in a box and don’t talk to anyone!

We did pay for our tease, a five minute lecture on the importance on keeping me connected with friends and family. Now I think she is stalking my Facebook and finding out my last status update (I wrote something not posted or re-posted) was July 22 but before that is was the beginning of May. And I lost the website address to the online pain support group. I’m looking for it. I might be in trouble tomorrow.

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Filed under migraine/headache, Random

This Must Be Serious

I often see “everyone remembers exactly when the pain began.” What they were doing, day, minute, even to the second.

But do you remember the day when the seriousness of what was happening hit you? A moment of clarity. When you realized you were screwed over by your own body?

That moment is clearer to me then the day the pain began.  Which is understandable I suppose because the pain made me pass out.

I have a twin brother. We did everything together growing up, almost inseparable. I was the crazy imaginative irrational rascal and he the stoic rational calm brat. We made a great team. When something was amiss Mom and Dad automatically yelled for the “twins”.

Collage and the Air Force separated us for the first time. I had been trying to call my brother since my first seizure with no avail (time zones, phone tag), so a week later I e-mailed my brother the details of my adventures and warned him that I needed to speak with him the evening of my first neurologist appointment and to call me with no regards to the time. The appointment did not go well.

Brother demanded a full account of my pain and why he wasn’t told the seriousness of it. He sounded angry,  he never sounded angry. He was talking fast and rambling a little. That is what I do when I get emotional. He has a facial expression and a slight tone, not a slightly raised voice and short pauses.  I hadn’t even told him how awful the appointment had gone yet. When the time came that he paused for that account I was surprised by my calm tone and reassurances that we had a game plan. It would not do. I needed to transfer to university down the road and live with him. He needed to care for me. Suddenly I am reminding him that he was awaiting orders to ship out. That the plan is irrational. For the first time my brother said something irrational and had deviated from his calm air. For the first time I told my brother no without being persuaded or reaching a compromise. (If he was not awaiting orders I would have transferred.)

My brother was scared and at a loss of what to do. It scared me. It made everything that was happening sink in. I realized that my internal dialog was referring to myself in third person. I wasn’t going through this, it was “Crystal” from “The story of her life.” I was confused, why did my brother just behave so?  Why do did we to go against our characters? I wanted to go but couldn’t, he should have said that. It was the first battle lost to my illness. I realized my illness is forcing my relationships to change. The illness had taken a few things away, this made me acutely aware of them. That brought it all together. The reality, seriousness, gravity, life changing tragedy that has darkened the doorstep of my family.   This moment was worse then the moment the pain started. The wave of emotions set off a migraine and I cried myself to sleep.


To give you an idea, I remember him loosing his calm and treat me this way only once before. I almost drowned while white water rafting when I was about 8 years old. He pulled me out of the water and when I woke up he was rebuking me. I did not respond with rationality.  I saw I lost my oar, afraid of getting in trouble, I tried to go back into the water to retrieve it.


Filed under epilepsy, migraine/headache, Random

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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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

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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,


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

I will be your friend forever,
Only you can make me alive,
I will become a tree behind you silently,
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!

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

Yea, yea, yea
Here we go!

Leave from bored daily life as you dreamed
Run towards the dream, dear
Go away, go away, let’s go away baby…
Whoa ho, whoa.. oh oh

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

I will be your friend forever,
Only you can make me alive,
I will become a tree behind you silently,
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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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.”

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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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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

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