Category Archives: challenge 2015

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.

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IIAW 15: Ribbon Art, Fairy Godmother


Fairy Godmother’s magic, blue ribbon, Chronic Fatigue Syndrome. “Even miracles take a little time’ The Fairy Godmother.

Waiting is what we learn to do best. Waiting can pay off because “even miracles take a little time” and effort. A better normal is possible.

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IIAW 15: Awareness Art, Disney

Alice smile

This is the Cheshire Cat’s smile from Alice in Wonderland. I paired with it the clear ribbon for invisible illnesses and the quote “I’m not crazy, my reality is just different than yours.” from the Cheshire Cat. Illness makes us different and makes us see the world differently. Our reality was changed the moment we experienced the first symptom. It does not mean that we are crazy or unfit for society. It simply means that we have a different perspective on life that is valuable to others and others can learn from it. I chose the smile because it is what most people see, they do not see the rest of us. Only our mask, the half-truth that we are okay.

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Invisible Illness Awareness Week (IIAW) 2015

My intentions for Invisible Illness Awareness Week took some planning because I did not find a blog challenge I liked. It ended up with me a little behind. First, I am going take questions I’ve been asked and find questions posted on the Facebook pages I follow about the invisible fight and answer them this week. The questions are going to be a little random. Secondly I am going to share my Disney awareness art. Disney has been with me since I was a child and has become of source of hope and encouragement for me since I fell ill. when my sister first told me to do art therapy I was watching a Disney Classic and it inspired my idea to paired movies with ribbons and hope inspiring quotes from the movie.

I would like to start by sharing Mickey Mouse. The tie-die ribbon symbolizes that all illness matter. Every fight is different but is equally challenging to the individual. It reminds us to stop comparing our struggles and share them so that we can gain hope and courage from one another. One part of the struggle we should share is our dream for a better “normal.” That is why I chose the quote from Walt Disney “All our dreams can come true if we have the courage to pursue them.” Out dream of a better normal can come true if we have the audacity to tell society to stick it. We need to advocate for ourselves and help others see past their prejudice and preconceived notions of what our lives should look like. We have to have the courage to try new doctors, treatments, and life-styles. It is hard and tiring and that is why it takes courage. I chose Mickey Mouse because he is courageous, flawed, and fails and gets back up all the time. I can see him dealing with an invisible illness with audacity.


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#PAM15 Day 22: Tips for Coloring through the Pain

Today we were encouraged to come up with our own thing.

I do not respond to pain medicine. I relay on distractions. Coloring has been a major distraction for me since the beginning.

Tips for using color pages to distract you from the pain.

  1. Pick the right materials: Pick a coloring book or page that speaks to you or makes you smile. The theme should be fun and excite you. It is important to choose one that is not too simple or too complicated for your eyes. It will not help to choose a picture that overwhelms you, is boring, or that you can finish in two minutes. After you have chosen the book/page, choose the medium. Take into consideration: does it fit nicely in your hand, the effort it takes to use it, texture, and the smell. I prefer color pencils: no caps, minimal smell, not messy, easy grip. I also like twist-able crayons for big spaces.
  2. Pick a comfortable spot. Pick a place you can relax your body and manage your materials easily. I like to curl up in a chair or on my bed. I attach the page to a clipboard or a lap table (like for a computer) and have my pencils in a metal box opened next to me.
  3. Don’t be perfect. The end result is not important. No one else has to see it. Focus on the process and the act of creating. You don’t have to stay in the lines or worry about if the colors match. Embrace your inner kid and go crazy.
  4. Immerse yourself. It is when you immerse yourself that you can be distracted. Focus on how the color fills the page, changes the page’s texture, and changes it into something unique, something with personality.
  5. Let time slip by. Don’t look at the clock. Get lost in the experience. Set an alarm if you need to. Let yourself get completely lost in the art so that it can distract you from pain.
  6. other. Have water or snacks on hand so that you don’t have to stop. Try controlled breathing while you color. For example, take a deep breath every time you choose a new color. You could also play soft music or listen to a book while you color. When I am not listening to music, I will listen to my Bible app. You can also try to use coloring to help you concentrate during prayer or meditation.

I found these on pintrest. Another site I like is

This site has some pretty pictures but they are not free.

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#PAM15: Day 19: Drawing Pain

Day 19 is to draw or paint pain. I am a little nervous sharing this. I didn’t know what to draw so I illustrated a poem I started a while back, and then I finished the poem. The poem started as joke that Pooh Bear is right and my brain has been stolen and replaced with gray fluff.

A little explanation: Every object being reflected back I have used to describe my pain, aura, or how I manage. I wrote “pain” on her three times not in English to symbolize how I tell people I am in pain without telling them, like today I told someone “I’m doing normal” (curious I used Hebrew, Korean, and Japanese). I drew the reflection three times bigger then the girl to show how overwhelming and all-consuming the pain is.

I am still learning to draw, it is not something I am talented in. For example, looking back I don’t think my fireworks translated well and look more like colorful blobs. I googled pain art a bit ago, it appears like ti is usually not symbolic like this. I hope you find it tolerable.


What do I see beyond the looking glass?

What is it reflecting besides a lass?

Lady Luck looks to the pressing anvil,

burning campfire, swirling quicksand, gravel

for her muses, she spins the pain dial.

Click Click Click. What will Lady Fortune wail?

Sometimes too brightly do fireworks glare.

Stars and streamers dazzle and dance midair.

Lighting streaks by as the sun shines up high.

Blazing fires and windows never darken.

Oftentimes whistles, horns, birds, and drums shriek.

Explosions and buzzing resound all week.

Blasts of Pistol Shrimp and roaring bears live

alongside where broken T-Vs thrive .

Ninjas try throwing daggers with sorrows.

Dancers stomp merrily amidst arrows.

While fellows struggle with pills and wheedles,

acupuncturist use pins and needles.

Tornadoes swirl and turn towards OZ

whereas bottomless rabbit wholes applause

Wonderland. The topsy turvy worlds take

and breaks ideas, and things in its wake.

But Lady Luck cannot rig the dial.

Hope is strongly protected like a snail.

Faith anchored in Christ fuels the fighter,

rouses the dreamer, and helps the sister.

Pooh Bear, Behold my brain has been replaced

with Gray Fluff, Painful Stuff, and Faith that’s Tough.

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#PAM15: Day 20: The Invisible Project

For more from the Invisible Project visit

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#PAM15 Day 18: What do you like about yourself?

Day 18: Write a list of things you like about yourself! It’s okay to have a little fun with this activity and be honest with yourself. This can include accomplishments you are proud of achieving, despite your pain.

  1. I am a Christian. I do not know how I would be without His help. I like that I grew up a Double Preacher’s Kid and the religious background that I was able to get because of how I grew up. I also like that I got to meet and minister to a lot of different kinds of people growing up (the longest I lived somewhere was 5 years). Knowing the Lord gives me strength and someone to lean on when it gets awful and I know He will never leave me alone to bare this on my lonesome.
  2. I beat the odds and earned my Bachelor’s and Masters degrees in sociology. Very few people thought that I could do it. A lot of people told me to quit.
  3. I am a twin that is a boy.
  4. I have an awesome family. Both of my parents are living and I have three awesome sisters, a twin brother, a sister-in-law, and my Uni. Two of my grandparents are still alive and I have a spattering of aunts/uncles/cousins.
  5. I am an aunt. My nieces are great.
  6. I have a high tolerance level–for stupidity and pain.
  7. I can create. I am grateful I have not lost my ability to create. I can write, although my skills have diminished. I can do crafts that usually turn out cute. My drawing is coming along slowly but okay.

This is hard. For everything I can think to put into the list I can think of two that would go into a list of things I miss about me or things I use to be able to do.


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#PAM15 Day 17: Medicine Saftey

Day 17: Patient Safety is one of U.S. Pain Foundation’s top priorities when it comes to the pain community. In an effort to reduce and eliminate unintentional overdoses of over-the-counter medications or legitimate prescriptions, U.S. Pain has partnered up with the Know Your Dose campaign. Think you’re smart when it comes to reading labels? Today we challenge you to play the Know Your Dose Interactive Game!

I totally aced the game. Know your Dose is the Acetaminophen awareness coalition.

know your does 2know your dose

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#PAM15 Day 16: Complimentary therapy options

Today is all about complimentary therapy options. These are things you can do along with traditional western medicine to fight the pain: biofeedback, stress management, acupuncture, herbs, essential oils, dietary changes, counseling, breathing, and art/music therapy are some.

The following are my experiences with complimentary therapy options.

  1. Counseling. I want to talk about more in a different post, but it is a good thing if you can find a good fit. Try it. If the counselor is not talking at all or if the counselor is not listening it is not going to work. If you don’t talk or don’t listen it’s not going to help. For me we talked about the parts of what was going on that was hard to talk about, deal with, and he helped me figure out how to explain things to people. And he helped me find some coping methods. I did not go wine for an hour every week, that is a stereotype. Some people need that, that’s okay. But I think that misconception is why we hesitate to go. Try it out, you and your caregivers might benefit.
  2. Breathing. When my councilor said “Would you be up for just breathing today?” I asked him if he was the crazy one. But controlled breathing helps me focus and get through the bad spells. Does it help lessen or prevent the pain? No. It can help it from spiraling out of control. Long controlled deep breaths in through the nose and out of your mouth. Try to keep them steady and even. Some people imagine that the air is blue and it fills their body, toes to tip of the head, and then release. I don’t. Keeps me focused on what needs to be done and calm.
  3. Guided imagery. I actually dropped a the class “acting and body movement” because Proff used it. Read about it and decided it is not very Christian. let me tell you about my experience with it shortly after I got sick. Off meds I have horrible nightmares and terrors. In class we are imagining that we were filled with blue air and floating on clouds. Proff said “water” then something about hugs. I slip into night-terror mode. Suddenly floating on water, then being pulled down to the bottom surrounded by shadow people-very vivid. I woke up tasting lake water, coughing, crying, terrified… Fun times.
  4. Acupuncture. Did not work. I am scared of needles but my Dad wanted me to try it. I talked to my doctor and he said that it works for some people but not the greatest option. I went for three months with no change.
  5. Headache Massage. Since my head is sensitive she massaged my feet and legs. Definitely relieves tension. My legs were wobbly and my pain changed. My entire brain went numb and my scalp started to feel pins and needles. My brain went completely blank. I craved Andy’s. It was a welcome change. While she was massaging me my muscles did jerk a little, she thought she hurt me, interesting trying to explain to someone not fluent in English why my leg did that. It ended with both of us feeling sorry and confused and she continued more gently.
  6. Diet changes. I have tried several diets. I have not found a diet that makes it better or worse. Best is to eat balanced and regularly I guess. Chocolate can make me feel better and it is the only thing that gets metallic tastes out of my mouth.
  7. Stress Management. Hahaha. Kekekeke. LOL. The doctor said to create a stress-free environment. I learned one does not exist. Once you remove everything the doctor thinks is stressing you, boredom starts to stress you out. I think that is why boredom is not a hobby and we use relief language around the state of mind. Relaxation tools can help a bit. Hobbies are good distractions. Research says that after patients implement stress management they have less pain and take less rescue meds. I do not have rescue meds. It does not lessen my pain, but I manage symptoms a little better. There is a big difference between being in less pain and having the ability to deal more effectively. Managing your stress is also good for your caregivers.
  8. Art therapy. I am just now trying this one out. My big sister is an artist and suggested it. Putting pain into a picture is hard. I have doodled. I think my first true art therapy piece is my Warrior Wizard. I drew her how I wish I could still be. Thinking clearly despite the pain. She is smiling because that is what we do, hide the pain. She is working on getting better, brewing a anti-pain potion. Simply drawing and coloring has helped. It is a way to get away. I play my music and put all my energy into focusing on the task at hand. It is something I am not good at, I know I shouldn’t compare to my sisters, but it makes me have to work at it. It has been a long time since I worked at getting something right. I never realized how much hand-eye coordination goes into drawing. I am a fan of distractions.
  9. Essential oils. Allergic to the ones for pain, it was an awful rash.
  10. Exercise. I am not sure if it helps. Wears me out. Sometimes it makes my brain go numb. Sometimes makes me dizzy. I was told not to exercise everyday (every other on not dizzy days) and to do light cardio. I like to mix it up. I have two DVDs. I do through level two or three on the light cardio “Biggest Looser” edition. I do up to two miles on “Walk a mile in 15” aerobic walking edition. Lately I have been more into WII yoga and balance exercises, about twenty minutes with positions that keep both feet firmly on the board/ground. I have been bad about getting back into the habit after my last long vertigo/dizzy episode.

About sums up my almost ten years of experimenting with treatment options. Do you have any fun experiences? The challenge is to engage, I will try to do a proper pain therapy drawing. I will post it if it works out, or some HP.

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