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.
Topic: What’s in your “#Migraine or #Headache cave?”
My bedroom in my cave. Making a even this corner of the house me-friendly is hard. From the best heating pad to kind of black out curtains, it is lot of trial and error got us to where we are now.
- Ceiling light is an incandescent 50 watt bulb. It is getting hard to find those things.
- Lamp 20 watt incandescent and closet a 40 watt incandescent.
- Floor length brown black out curtains.
- Medium purple walls (white walls add brightness and a medium blue made the room a little too dark with the lights off and to bright with the lights on around dusk. I usually don’t turn on lights until its dark outside)
- Drawers next to my bed: medicine, tissues, heat pad doll, color books, drawing/coloring stuff, mp3 player/speaker/headphones, and things I use every day.
- Table with computer and drinks
- Hanging off my bed frame: noise cancelling headphones, crotch project bag, and a sweater.
- End of my bed, extra blankets/pillows, and Chewbecca/teddy bears.
- Trash bin and power outlet next to my bed
- An aloe plant to purify the air
- TV with Netflix, Dramafever, Pandora, and Youtube apps downloaded. (I have the brightness turned down to almost the darkest setting)
- chair with foot stool
- I keep most of the materials I need for my pain management projects in my close
- And Karma’s toys line my doorway, that is where Karma thinks they belong
MHAM Day 10 Topic: How does your pet help you manage #Migraine or #Headache?
This is Karma. She loves walks, sitting on the porch, digging, treats, and being petted. Sometimes she gets hyper focused on one family member. Usually that family member is not doing well physically or emotionally. Karma will stay by their side, guard their doorway, and put her head or paw on their leg. Sometimes she talks to them. And she mopes. Ask her “Do you need?” and she will stare at the person or the person’s room.
She tends to know where I am all the time. “Karma, where is Crystal” or “Karma, find Crystal.” She will run back and forth between me and the person looking for me until Karma is satisfied the person found me. Sometimes Karma says “hey come see Crystal.” There was a day I fell and could not get up I was so dizzy. Karma lay down and stared at me for over an hour not moving. Karma herd the car pull up, ran to the front door, and started barking. I herd the door open then Karma’s paws sprinting down the hallway. She paused in the doorway. Mom had not gotten the hint. She sprinted off. She came and went two more times. The third time she barked at Mom. Then Mom came and the “Crap Crystal is sick” routine commenced. Since then we taught Karma everyone’s name who lives in the house.
Other phrases Karma learned was “Name, doesn’t feel good” and “Go to, name.” Both phrases result in Karma finding the person and giving them loving or begging for attention. Having Karma to pet is soothing. I don’t know what it is about simply running my hand through her fur. Another thing is I can match her breaths to get into my breathing exercises if the pain is so bad I’m having trouble. She can be a confidant. I can tell Karma anything and know she will not treat me differently. “Karma it hurts to much.” She will still ask me to throw her rope and give her treats. Another funny thing Karma does is smile when she is petted (I read that is backwards, dogs usually smile to get petted). It’s feels the same as making someone smile. A little positive emotion boost when the pain is a killer is nice.
For more blogger’s posts about this topic go to (http://www.migraine.ninja/2017/06/10-pets-can-sense-and-comfort-during-a-migraine-or-headache.htm) and look down in the comments.
I started feeling non-stop pain in March of 2005. A few months ago I had an altercation with some light monsters. At my doctor’s appoint last month we decided that an episode of extreme light sensitivity should be avoided. The pain doctor prescribed me Naproxen. He explains to take it as needed for when it gets bad but no more than 2 pills a week. I get the bottle and there are ten pills inside for a month.
I did not ask for these. I felt like the pain had defeated me somehow. I’ve gone about 9 years without any. To me it’s huh, this sucks. To others’ it’s, yes finally; something you should have been taking for a long time now.
I take one pill and sleep for the majority of two days.
It’s great. Sleeping through an awful migraine is nice but I miss out on everything for two days but the chances of enhanced sensitivity are stronger now but I have to take medicine. Weird toss up.
I feel like I have to report to someone. “Hey, I’m taking a pain pill.” Or I wait until someone tells me to go take one. I don’t know when I have reached the threshold of go take the pain medicine. And then I write it down so that I don’t accidently take more than two that week. It is weird internal dialogue.
I believe the most important thing is that the pills brought relief to my caregivers. And we are thankful for the ability to be proactive instead of solely reactive to unbearable pain levels. Hopefully, we won’t have to go back to the ER for a long time.
Stories that inspire through real stories by real people facing real challenges. Having a disability or disease doesn’t have to be isolating. U.S. Pain Foundation partnered with The Mighty to allow pain warriors a safe platform to face their adversity with the pain community. Today’s challenge is to read one featured story from The Mighty and then SHARE it on social media.
“Why the World Shouldn’t View Acceptance of Our Illnesses as Giving Up”
By Selena Wilson
When you are having a high pain day, what have you found comforting?
- Music: It is proven to decrease pain, increase optimism, speed healing, decrease anxiety, improve mental health, lower heart beat, improve sleep habits, help relaxation, inspire creativity, and other stuff.
- My cave: dark, enclosed space, my bed, limited human interaction, safe place to cry and be in a bad mood, can stare out into space…
- Cuddling: Cuddling releases oxitocin. It reduced stress, relaxes muscles, and is a pain reducer. I cuddle with my teddy bears, pillow, blankets, and my fav was a boy when I had one.
- TV and movies: When I can stand the light I watch but I can’t see to read normally. House MD, Disney, Star Trek, crime shows, fairy tales, MASH 4077th…
A lot of high pain days I don’t even turn on my computer, hence why I’m behind. I can barely think, my balance is crazy, and my vision is all wonky. It takes a lot of my pain management tools out of the list.
Music stimulates the brain. Pleasing music releases endorphins that relieve pain. Music can also be a way to distract a person from pain. It gives a person something to concentrate on. I think music is a coping tool that is readily available and valuable.
Music therapists can use music in a variety of ways to help a patient battle pain. The therapists can help a person learn to cope and express their pain through creative expression or a more passive setting through discussion and meditation while listening. Thinking about taking music therapy on? Check this out (http://www.musictherapy.org/)
I use music as a coping mechanism everyday. A few years ago my Dad read that listening to music for half an hour helps pain patients fall asleep. Ever since I have been listening to music every night before I fall asleep. I’m listening my “soft” list right now, it mostly has ballads from boy bands that are in the lower tones and slower. Most of the song are in Korean. It gives me something to do during those episodes where listening to music is about all that I can handle. I can listen for words that I know the meaning to, pick out individual sentences, and focus on how words are pronounced.
A sound track I like listening to on bad pain days is the “Gu Family Book OST” Lee Sung Gi is one of my favorites for bad days.
What creative tools do you use to empower yourself as a pain warrior?
Most of my pain management activities are creative. I color, draw, crochet, blog, sew, do bead work occasionally, make stuffed toys, create church bulletin boards, bake on very good days, and kid crafts with my niece. Everything takes a different level of skill and concentration, each its own danger rating, and having so many means their is usually something I can do despite my pain level. My most recent finished projects are a crocheted Mulan and a pig, drawings of my Finding Nemo and Cinderella 2 ribbons, and one of my coloring pages.
Knowledge can empower pain warriors during moments of uncertainty, break-through pain episodes and loneliness. Check out (http://learnaboutyourpain.com/)
When I told my neurologist about my visual symptoms he used them as a sure fire sign that I had caught the crazies. He told me to draw what I was seeing and sent me to a psychologist. All I could find was a broken black crayon and a borrowed sketch book. Black and white sketches are another sign of the crazies. In pain, terrified, and ignorance were all strikes against me. The only medical shows I had watched was “MASH 4077th” and “Patch Adams.” I was screwed.
Migraine or headache disorder did not cross the mind of two neurologists. I didn’t know there were real head pain disorders until my third neurologist diagnosed me with “intractable head pain.” It is important to understand pain. It is okay not to understand it, doctors don’t understand pain. There has not been a whole lot of research done on pain. Pain doesn’t get the funding it deserves. Its an contradiction we have to deal with. It can be annoying going to a doctor and knowing more about your condition then the doctor. I often tell family doctors, “Yes, the neurologists and I are positive it is not just allergies.”
Knowledge is comforting and helps deal. It also helps the doctor help you. Knowledge about your condition helps you notice things or put names to things you didn’t know how to describe to your doctor. It also helps you talk to normal people. I can back up the words “I am not crazy.” I like reading the same information posted by different people sometimes. It can show how the different people experience or express the same symptoms in their unique way. It can help find a new way to describe something if the way you are describing something is getting you nowhere. For example, the only way I could think to describe vertigo was to ask if I was sitting down or disequilibrium by asking if I was falling.
The US Pain Foundation set up a sister site to help people learn about pain conditions. I think they may still be working on it a bit. It is pretty basic information but it is good information. It has links to find out more information about the conditions. It seems pretty easy to use. It is worth checking out. It has a good trigger list, especially the food triggers, for migraines.
I like learning more about my conditions. I don’t always feel empowered by what I learned. Sometimes news in saddening. It is comfort that there are people producing new information for us to learn from. There are researchers who are interesting in improving our quality of life.
Who is someone you have found inspiring during your pain journey and why?
I thought about this a lot all day because I really don’t understand.
My grandma. She taught me that it is all going to be ok and I’m ok.
My grandma illness worsened about the same time I got sick. She had pain everyday. She was the only person I knew who had pain everyday. When we went to Wisconsin to visit I started staying at grandma’s house. She gave me lessons in how to behave and take care of myself. Every time the family would go somewhere grandma and I would have discussions about what I was capable of at that moment, that is always the first question, not do I want. She taught me to read my body. What others think doesn’t matter. If someone wants to see you they will come. If you push your body it will knock you down. She taught me how to engage my eyes when they playing tricks on me.
Me getting sent inside.
She taught me that it is okay to be yourself and its also OK to try to keep yourself but it changes you. She chided me on being the slowest and worst learner God could have sent her. I learned a lot from just watching too. She didn’t smile a lot but didn’t frown or be a sour puss either. I only saw the pain on her face occasionally and briefly. But she also let everyone know that she hurt when she felt like they forgot. If you asked her how she felt she gave a honest ten minute answer. In the past eleven years the place I felt safest was with her. I woke up terrified after each seizure until the day I woke up from one and she was hovering over me. She said “Oh look, there you are, your ok. We got ya. You remember that, your ok kid.” Now when I wake up I remember her saying, your ok kid. She made all of this not so scary and more manageable.