HAWMC Prompt 30: Gobbeldygook Day

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to make up a new word (it can be a combination of two words or complete nonsense). What is the word? How do you pronounce it? What does it mean? Use it in a sentence.

A portmanteau or portmanteau word is "a blend of two (or more) words or morphemes into one new word... [It] typically combines both sounds and meanings."

CHRAIN [krn, kreyn]
    -noun
1. portmanteau of "chronic" and "pain"
2. hurt, discomfort, or distress that is constant and has an indefinite duration
3. a state of physical, emotional, or mental lack of well-being that is marked by long duration, by frequent recurrence over a long time, and often by slowly progressing seriousness

Sentences:  I've had chrain for years. Chrain has interfered with all aspects of my life.
 

HAWMC Prompt 29: Health Cliche

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Photo by Noodle93

Today's challenge is to think about a health cliché that really bugs me, and then reclaim it by turning it around and make it something that I can be comfortable hearing. A cliché is "an expression, idea, or element of an artistic work which has been overused to the point of losing its original meaning or effect, rendering it a stereotype, especially when at some earlier time it was considered meaningful or novel."

There are a lot of clichés flying around, especially when someone has a medical condition. Over the past few years, I've heard my fair share of them... "It could('ve) be(en) so much worse." ... "Whatever doesn't kill you makes you stronger." ... "This too shall pass." While people using these clichés have good intentions, they can be very hurtful.

"It could('ve) be(en) so much worse." - I know that it could've been worse. I know that it could be worse now. This rarely provides any sort of relief, but I try my best to thank God that things weren't/aren't worse.

"Whatever doesn't kill you makes you stronger." - I know that the Lord is using this difficult time to make me stronger. It doesn't make things much easier;but knowing that He's using these trials to mold me into the woman He wants me to be gives me motivation to keep going, even in the darkest and hardest of times.

"This too shall pass." - There is no cure for Migraine disease. So, I just continue to seek the best treatment I can, and try to improve the quality of life I have with Migraine, because the chronic pain may be something I have to deal with the rest of my life. I have faith that the Lord will help me through the trials along my journey... knowing that Him seeing me through doesn't necessarily mean that He's going to take away the pain.

HAWMC Prompt 28: I Used To Be...

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a short story or poem, where every sentence starts with the phrase "I used to be" and ends with "but I'm not anymore."

I used to be active, but I'm not anymore.
I used to be (more) confident, but I'm not anymore.
I used to be quick-witted, but I'm not anymore.
I used to be scholarly, but I'm not anymore.
I used to be independent, but I'm not anymore.
I used to be isolated, but I'm not anymore.
I used to be terrified, but I'm not anymore.

HAWMC Prompt 27: Quote Prompt

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

by Vicki Swords

Today's challenge is to find a quote that inspires me either positively or negatively, and then write about it. I've always loved quotes! So, choosing a quote for today's post was both easy and hard. I was just going to include the last paragraph quoted below by Charles Colson, but the beginning gives some background to his life. The italics have been added by me, and will be referred to below.

"...The real legacy of my life was my biggest failure – that I was an ex-convict. My greatest humiliation – being sent to prison – was the beginning of God’s greatest use of my life; He chose the one experience in which I could not glory, for His glory.

Confronted with this staggering truth, I discovered in those few moments in the prison chapel that my world was turned upside down. I understood with a jolt that I had been looking at life backward.

But now I could see: only when I lost everything that I thought made me a great guy had I found the true self God intended me to be and the true purpose of my life.

It is not what we do that matters, but what a sovereign God chooses to do through us. God doesn’t want our success; he wants us. He doesn’t demand our achievements; he demands our obedience. The Kingdom of God is a kingdom of paradox, where through the ugly defeat of a cross a holy God is utterly glorified. Victory comes through defeat; healing through brokenness; finding self through losing self."

~ Charles ("Chuck") W. Colson (Loving God)

There are so many things packed into this long quote. It's so moving and powerful to me; and it's taken on so much more meaning, since I've been trying to find purpose and acceptance among the pain that I've experienced since my car accident.

"He chose the one experience in which I could not glory, for His glory." - There is nothing glorious in chronic, unrelenting pain. However, God is using this time in my life, so that He will be glorified. It is only through Him that I've endured so much. And, though my faith has been shaken at times during these trials, I know that God is my strength and He deserves all the glory.

"...only when I lost everything that I thought made me a great guy had I found the true self God intended me to be and the true purpose of my life." - Over the past 10 years, I've actually had a series of losses of things that I identified myself by. I felt completely lost, when I was injured in high school and no longer able to play softball or run. When I was in the car accident 2.5 years ago, everything else seemed to fall apart (sometimes over time and sometimes all at once). Suddenly, I couldn't read and write because of pain and memory issues. I was trying to deal with my mind processing slowly, which wasn't something I really dealt with much before. I've always identified myself with my mind, and I could no longer do the type of stuff that I loved so much. I tried returning to school (starting graduate school), but struggled so much. BUT, I know that God is working in these trials to prepare me for His calling on my life. I'm journeying to find my true self and life purpose, who God intends me to be and what He calls me to do.

"It is not what we do that matters, but what a sovereign God chooses to do through us." - I've always wanted to make a difference in people's lives. It's been my fervent prayer that God use me as a vessel and work through me to reach others. I've been humbled on many occasions, when I'm afforded the opportunity to see how God has worked through me in certain situations or ways. It's such a blessing!

"God doesn’t want our success; he wants us." - This has been more difficult for me to swallow. I've always been a perfectionist and very results-oriented. Not to mention, our society places so much emphasis on being "perfect" and "successful." I've always known that God loves me unconditionally, but I've always wanted to... perhaps "make Him proud." It's a difficult thing to truly grasp that our God wants our successes and our failures, our strengths and our weaknesses... because He doesn't categorize the same ways that we tend to (our failures may be ways to steer us towards His calling, so that we might experience great successes). God wants each of us, and every part of us.

"He doesn’t demand our achievements; he demands our obedience." - This one is somewhat an extension of the previous section of the quote (see above). But, it speaks to God's demand for our obedience. I've been learning this one, especially over the past few years. The car accident injured me in such a way that I'm unable to achieve what I was before. But, God doesn't demand my achievements, He demands my obedience. I've struggled a lot with the obedience and discipline aspects of my faith.

"The Kingdom of God is a kingdom of paradox, where through the ugly defeat of a cross a holy God is utterly glorified." - How true it is that "the Kingdom of God is a kingdom of paradox" (an interesting read is a sermon by Timothy Peck, The Paradox of God's Kingdom). Jesus suffered and died on a cross, in order for God to ultimately be glorified.

"Victory comes through defeat; healing through brokenness; finding self through losing self." - These are more paradoxes. I think that God often uses trials to bring us closer to Him. When we are at our weakest, He is our strength. When we our broken, He is the only one that can truly heal us. And, when we feel defeated, He is working behind the scenes preparing us for victory.

HAWMC Prompt 26: Spirit Animal Day

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to give my condition a spirit animal. "Write about yourself or it as though you/it are that animal. What qualities of the animal do you or your condition possess that are positive? How is this a metaphor?"

I was having a little difficulty coming up with what to write about, so I did an online search to see what I could find. I ended up finding a simple 15-question quiz to help you discover your spirit animal. Once I took the quiz, my score resulted in my spirit animal being a wolf. I've always been fascinated by wolves. And, as I read the description on the results page, it started to occur to me how this might just be fitting. Some of the wolf's characteristics are listed below, along with a description of some ways that I display/ralate to them.

Enhanced senses. I have sharp, enhanced senses. I can smell even the slightest of smells, and can be easily overwhelmed by too many scents at one time. I can hear even the softest of sounds. I can see even a single beam of light through a curtain or under a door.

Stamina/endurance. I have endured a lot, especially through the trials of the last few years. My body has been through so much trauma. My mind has been faced with difficult challenges to overcome. My soul has struggled to find meaning in the chaos and keep faith in the Lord. He has helped me to endure... and is helping me still.

Family. I form deep connections with close family and friends, and they know that I'd do anything to protect them. I am steadfast, loyal, devoted, and passionate.

Inner strength and intuition. I am growing my intuition, instinct linked with intelligence. Even when I feel weak, I know that the Lord is building my inner strength, in preparation to fulfill His calling on my life.

Adaptability. I'm learning to take advantage of change. I've been faced with a transformation (a death of my old self, and a birth of my new self), and I strive to face it with courage. The new paths and journeys that lie before me are unknown/unclear; but I'm learning to fear change less, and trust God more.

Perseverance. Despite these trials and obstacles, I continue to put one foot in front of the other. Some days I need more help than others, but I try to keep pressing onward.

I ended up taking a second quiz (on a different website), and my result was the coyote. The coyote is a cousin of the wolf, so it seems pretty fitting and consistent with the other quiz I took. The website where I took the quiz describes the coyote:

"According to shamanistic wisdom, coyotes are the animal world's trickster. Coyote people have a way with words, and a unique way of seeing the world. Never ones to take things at face value, coyote people question authority with sly jokes. Luckily, their wit usually keeps them out of serious trouble. Coyote people often prefer to have a few close friendships instead of lots of casual ones.

If you are true to type, you probably have a wry sense of humor and are the first to weigh in with a sarcastic joke. People who don't know you well may not get your sense of humor, which may have gotten you into trouble here or there... unless you used that old Coyote charm to get out of it..."

HAWMC Prompt 25: Red Pen Day

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to find an old post of mine and revise it as radically as I can.

I've always enjoyed proofreading (mainly for other people). It's one of those things that most other people hate to do, but I like it. I tend to see spelling and grammatical errors almost jump off the page. This is the one place my perfectionism and detail-oriented nature really come in handy.

I looked through a few of my older posts, but wasn't finding a whole lot that I would actually change. I typically proofread my blog entries (at least once) and do spell check, before I post them online. I also try my best to do my research, before I post a blog about migraine disease. And, posts that are on a more personal level are what I was thinking and/or feeling at that time, and that's not something that I'm going to change or even try to clarify because it's a snapshot of that time.

HAWMC Prompt 24: Best Moment of Last Week

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write about the best thing that happened to me last week.

Yesterday evening, we had a surprise birthday party for my mom. We invited family and friends out to the Olive Garden; where we enjoyed dinner, desserts, and great company. Part of what's so great about this is simply that I was able to go, and felt pretty well for most of the 3 hours at the restaurant. I got to see my twin nieces and my nephew (all of whom are about 3 years old)... they're always so good to see (they're growing so fast, though!). It was really good to spend time with everyone.

Photo by chiaralily

Today is Easter, and I hope that everyone has a blessed day! I've spent the day by going to church in the morning, and then spending time with family (first, time with my side of the family; then, with Jeremy's side of the family). We both have such wonderful families, and it's always nice to spend time together. So, Happy Easter! Thanks be to God!

HAWMC Prompt 23: Dr. Seuss Day

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a post with as many rhymes as I can. It can be a poem with end-rhymes or a paragraph with internal rhymes. I can't say that my writing is at all like Dr. Seuss', but here it is:

I don't know what to do,
when I feel down and blue.

I don't understand why
there are times I can't cry.

I don't know how to stop the pain,
when it feels like a freight train.

HAWMC Prompt 22: Prescribed

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write about a wacky prescription that I wish were a treatment for my condition. So, here's the prescription I'd love for my doctor to give me:

Eat 3 chocolate chip cookies at the same time each day.

HAWMC Prompt 21: Who I Admire

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.


© 2009 David Madden Photography.

Today's challenge is to free-write about someone I admire. I'm going to use this post to write a little about my parents.

My parents are amazing individuals. They're also a shining example of true love. They've been married for almost 30 years, and they're still very much in love. It's absolutely beautiful! I'm so grateful for the sacrifices that they've made throughout my life, and I'm so proud of them for continuing to strive toward their own dreams.

My mom and I may not have always been super close, but we are now (and I'm so grateful that we are!). She has always been there for me. She's been my rock over these past few years, since my car accident - going with me to doctor appointments and meetings with the attorney, helping me with insurance company messes and disability claims, and just the general ups and downs. She's so much stronger than she thinks she is.

My dad and I have always had an indescribably strong connection. We can understand what the other is thinking and/or experiencing in an unexplainable way. We've always shared a love for old cars/car shows, art, and deep conversations. He always seems to know just the right thing to say, and his hugs make everything feel alright.

I'm so blessed to have an amazing family. I love and admire them so much!

HAWMC Prompt 20: Writing Room

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to describe my writing room. This room was originally referred to as "the study." But, for some reason, my husband and I started calling it "the dungeon." My desk is where my computer is, and there are multiple book shelves in the room (I love my books!). There's also a treadmill, a storage closet, and a TV/DVD player on a dresser. I typically have Friends playing in the background because I sometimes have trouble with complete silence (and I know all the lines, so I'm not distracted or tempted to just sit and watch it... though it still makes me laugh so much!).

Part of the challenge is to name an item in the room of each color (and my own challenge is to not use books for each color, though I have enough that I definitely could):

• Red - Kleenex box
• Orange - pad of sticky notes
• Yellow - picture of a yellow rose (my favorite flower)
• Green - Worry Stone from Ireland
• Blue - the matte around my college diploma
• Violet - some flowers on my bookshelf
• Black - picture frames (I love pictures of my family and friends)
• Brown - a marble bear bookend that a dear friend gave me (she has the other one)

I really like the dungeon because it's "away" from the rest of the apartment, where I spend much of my time. I have a corner that's all my own, where I can be surrounded by my books. I wish that I was able to read and write more... one day, these migraines will be more under control and I'll get back to work on writing more frequently.

HAWMC Prompt 19: Health Activist's Choice

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is Health Activist's choice. So, I'd like to share an action alert that I received from the American Pain Foundation regarding medication safety. It's Spring, which means that it's time for Spring cleaning. Why not take some time to clean out your medicine cabinet, too? There's a National Take Back Initiative taking place April 30th (10am to 2pm) - see below for details. Local collection sites and law enforcement agencies will be available to safely dispose of accumulated unwanted, unused prescription drugs.

The April Action of the Month Focuses on Medication Safety

Take stock and clean out your medication supply. Gather all of the medications in your home that have expired as they may have lost their effectiveness and/or could be harmful if taken. Collect any medications that are no longer in use, too.

Next, properly dispose of these expired or unnecessary medications by:

• Participating in the Drug Enforcement Agency’s Take Back Program on Saturday, April 30, 2011, from 10 am to 2 pm in your local area. Learn more.

OR

• Properly disposing of them.
• Flushing medications: Do not flush prescription medications down the toilet unless approved by your pharmacist or included in the Food and Drug Administration’s list.
• Throwing out medications in the household trash. Throw out medications only if flushing instructions are not provided, but first:

1. Take them out of their original containers.
2. Mix the medications with used coffee grounds or kitty litter. This will make the medication less appealing to children and pets, and unrecognizable to people who may intentionally go through your trash.
3. Pour the mixture into a sealable plastic bag, empty can, or other container to prevent it from leaking or breaking out of a garbage bag.
4. Remove and destroy ALL identifying personal information (prescription label) from all medication containers before recycling them or throwing them into the trash.
5. Throw them in the trash.

Share this information

 with family members and friends with a note encouraging them to take stock in their homes. Post this information in your community: church bulletin board or newsletter, grocery store, hair salon or rotary club. Tell your Facebook friends and Twitter followers about APF by sharing the following message: Take Stock of Your Medications in Your Home. Dispose of all expired and unused medications. http://bit.ly/gQ0JRd 

For additional information on safe use of pain medications and proper disposal please visit www.painsafe.org. 

Your participation in disposing of unused or unnecessary medications properly is critical to helping protect access to care and transforming pain care in America. Encourage others to become part of this effort and join APF.

REPORT BACK – click here to report back to APF that you TOOK ACTION! 

HAWMC Prompt 18: Daily Schedule

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a list of my daily routine from the moment I get up until the moment I go to bed.

My daily schedule depends very much on how I'm feeling. This is extremely frustrating for me! I've always been a to-do list sort of person. Before my accident, I would write out a daily and/or weekly to-do list. I still have lists (mainly because my memory seems to no longer work); but they're more open-ended, unless there's actually something scheduled (e.g., doctor appointments). It's difficult for me to gauge what I can actually accomplish versus what I want or need to accomplish in a day. I'm getting better at knowing that all tasks are going to take me longer than they used to. I can write a realistic to-do list for a day (a day with pain below migraine-level); but problems with pain interfere so often that I rarely do this anymore. 

A "good"/non-migraine day looks like this:

• Wake up; Brush teeth
• Check email; Read some articles in Google Reader
• Eat breakfast; Take meds
• Blog - read/write
• Eat lunch; Take meds
• Do a few things around the apartment (pick up, organize, etc)
• Watch TV/movie
• Eat whatever I can for dinner (poor appetite from meds)
• Blog - read/write
• Take meds; Snack
• Update health calendar/diary
• Brush teeth; Go to bed

* Jeremy and I walk together for 10-15 minutes, whenever I'm feeling well enough to (which hasn't been very frequently, lately).
** We sometimes play games (Yahtzee, Phase 10, Uno, Farkle, SkipBo, Chameleon) together.

Photo by matsuyuki

A bad/migraine day looks more like this:

• Wake up
• Brush teeth
• Eat breakfast; Take meds
• Have Jeremy give me a shot
• Lay around on the couch - watch a movie, try to rest/nap
• Eat whatever I can for lunch and dinner
• Check email and blog, if I feel up to it (definitely limited/not for very long)
• Take meds
• Update health calendar/diary
• Brush teeth
• Go to bed

I've been so blessed to have Jeremy around the apartment to help take care of me, especially since I've had trouble taking care of myself for a while. He cooks and takes care of a lot of the housework; though I love to help, when I'm able to. We enjoy doing our own thing (he plays computer games, I blog/write), but it's been nice to be able to spend so much time with him.

PFAM: Diagnosiversary

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Rachel, at Tales of Rachel, is hosting the April edition of the PFAM blog carnival. This month's topic is: "Diagnosiversary: Explore what living another year as a patient means to you. Is a diagnosiversary or birthday something to celebrate, or more of a sad thing, or both?"

Rachel writes:

"Some look to their diagnosis with relief that their symptoms have an answer. Others lament another year with a condition that saps their physical and/or emotional strength, hoping for a cure to materialize. Still others were diagnosed soon after birth or as young children and know nothing of life without their conditions. And, of course, there are some of use for which a diagnosis still lingers."

I've had pain for such a long time, that it's actually nearly impossible to remember a time that I didn't hurt. While I don't know when exactly all of my pain and diagnoses began, there are a few dates that are instilled in my memory.

April 6, 2001 - I experienced an intense hip pain at a track meet, which ended up being tendinitis bursitis. I thought this was an end to my running and softball careers; but I worked hard through physical therapy and retraining, so I could compete my senior year of high school (I had to sit out my junior year).

August 2002 - I had worked hard to heal and retrain after my hip injury. We were just about to begin cross country training... I woke up one morning, unable to move. My low back hurt so badly. I did physical therapy, but never figured out the cause of the pain. I had some back pain before this injury, but it was pretty well-controlled by chiropractic visits. I've had chronic low back pain (with ups and downs), since the injury.

October 10, 2008 - I was in a car accident. I hurt my neck and right shoulder. I also suffered a concussion. I've had chronic, debilitating migraines, since the accident. I've had numerous tests done, visited a lot of doctors, taken more meds than I care to think about, done physical therapy a few times, etc... The accident has also resulted in depression, anxiety, and post-traumatic stress disorder (PTSD).

I had some headaches and migraines before the accident, but they were infrequent and controllable... not even close to the same kind of pain that I have now. I also had some struggles with depression and anxiety before the accident, but I was on antidepressants and had been doing well. Then, after the accident, I suddenly couldn't handle stress anymore. The depression became worse - both the highs and lows became lower. I'm still trying to work through these things, but I think it's going to be an ongoing process.

Photo by Kaptain Kobold

Diagnosiversary

I had a hard time for years following my April 2001 injury. The injury ended me being able to play softball and run - things that were major parts of my life, and helped me express all of my emotions (positive and negative)... without them, I was lost.

Since my October 2008 accident, I find myself having a difficult time dealing with it... especially around every 6 month mark. Whenever I cross over to the next half year, I struggle with the reality that I'm still in so much pain, we still don't understand why I'm still hurting so much, and all the changes that the accident/pain have made in my life.

So each year that goes by has mixed emotions. I don't have answers for why I have a lot of the chronic pain I have. It's another year of unanswered questions, numerous doctor visits, and unsuccessful treatments. But, it's another year of being grateful for my family and having access to medical care.

HAWMC Prompt 17: Mindful Moment

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to describe something sensory with as much imagery as I can. Mindfulness is "an attentive awareness of the reality of things (especially of the present moment)."

Van Gogh's Starry Night

The soft breeze brushes across my face, as I lounge in an open field below the blanket of stars in the night sky. Looking up at the heavens, surrounded only by the beauty of nature, allows me to spend precious time alone with my Lord. And, for those moments, I feel peace.

HAWMC Prompt 16: Report This

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to: write a blog where you wake up, it's some day in the future, and your condition has been cured. You heard right: cured. And you've been chosen to cover the breaking news. It's your big break: write the Press Release, interview the cure-founder, or visit the discovery site where patients everywhere are flocking to get in line.

I've been thinking about this prompt for quite a while, and I have to admit that I'm having trouble with it. I really don't like the term "cure." Since there is no cure for Migraine, I'm just having a difficult time making myself even think about it... much less, make light of it by writing a pretend press release. So, I'm going to pass on today's prompt.

I truly hope that there will one day be a cure for Migraine.

HAWMC Prompt 15: Two Sentence Story

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a story with a beginning, middle, and end in only two sentences. The purpose of this prompt is to work on being more concise and purposeful with our narratives.

After years of unending pain, failed treatments, lost relationships, and mounting frustration; she feels overpowered by the invisible illness that has slowly taken over her life and strangled her dreams. But, amidst all the uncertainty, she continues to face each day with as much faith and confidence as she can, because she has a loving man by her side that encourages her to remain hopeful and continue striving for new dreams.

HAWMC Prompt 14: Poem of Misconceptions

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a poem (5-10 lines) where every line is a lie or misconception about your health condition.

A migraine is just a bad headache
   that is only experienced by women.
All migraines have the same symptoms,
   and any doctor can diagnose and treat them.
Migraines cannot be dangerous,
   and can only happen in adults, not children.
The cause of migraine is known,
   including mental illness and physical exertion.
There is a cure migraine -
   just rest and take some medication.

These are just some of the misconceptions about Migraine.

HAWMC Prompt 13: Comfort One Another

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is a meditation on naming blog posts. Pick up a book and choose a phrase or sentence at random - make that the name of today's blog post. I've had a pretty wicked migraine all day, so I'm not sure how coherent this post will end up (please accept this as my warning... and apology).

"Comfort One Another" - Stories of Prayer for a Healthy Soul, Compiled by Christine Anderson (Phyllis Hobe, page 54)

In a society that increasingly encourages independence, it's important to remember that we're here on this earth to offer companionship, comfort, and encouragement to one another... we need each other.

For those of us that live with chronic illness, we need to remember several things. Comfort and encouragement can be found within one's family or circle of friends; but these dynamics often change, when someone becomes chronically ill. Comfort can be sought from one's local community - through church, support groups, hobby classes, etc...

I've found that, for me, some of the most needed comfort and encouragement, though, has come from the online blogging community. Being able to interact and communicate with others that have chronic pain allows for a special bond to be formed, a bond of understanding that is difficult to form otherwise. Each person is able to give however and whatever they're able to, and feel comfortable asking for comfort and encouragement from others (asking for help can be a bit more difficult, see Help: A Four-Letter Word).

There are so many different avenues to both give and receive comfort and encouragement to others. Even though I'm in my home much of the time, I can do things online, send cards, make phone calls (my migraines limit these), and pray.

"Encourage one another and build each other up, just as in fact you are doing." - 1 Thessalonians 5:11

HAWMC Prompt 12: Ekphrasis

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write an Ekphrasis (writing about another art form). It gives life to a piece of art through storytelling. So, I am to find a photograph online that inspires me in some way (positively or negatively), and then free write about it for exactly 15 minutes without stopping. Brave bonus: Publish your free writing without editing!


Photo by ashley rose

This photograph captivates me. It depicts so many different emotions, all in the same photo... in the same person. I often find myself feeling so many different things at one time, or in quick succession.

Crying out, "Why?!" I've asked and pleaded this numerous times. I don't understand why things happen. I know that I'm not meant to, and that God will show me in His time; but I am human and I feel the urge to know "why." Why was I in that car accident? Why did I have to be in that exact place at that exact time? Why did one moment in time cause so much pain and change my life forever? Why can't I come to terms with and accept things as they are now? Why? Why? WHY?!

But, as I cry out to the Lord and string together an endless line of questions, I find myself trying to open up to receive His love and peace. It is in the moments of darkness that I realize how much I need the light. I spread my arms open wide and look up toward the Heavens, toward my Savior. He is the only one that understands. He is the only one that knows the answers that my heart and my soul long for. He is the only one that can offer me true healing and peace. He is what my heart and soul desire.

I long for the freedom to stand out on a bluff near the ocean, with the breeze gently brushing across my face. Just to spend time alone in nature. A brief reprieve from the day-to-day worries, stresses, pain, etc... What I would give to be able to enjoy some time alone, just the breeze and me.

HAWMC Prompt 11: Wikipedia Page

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to revise the Wikipedia page for my condition. I spent quite a while reading through the Wikipedia page for Migraine. There's a lot of detailed information provided, and it seems to be pretty accurate. They also provide a lot of references to back up the information.

If there was something that I would add, it would be additional external links. They provide a few, but I would at least add the following:

• Alliance for Headache Disorders Advocacy
• American Academy of Neurology
• American Headache Society
• American Migraine Foundation
• Help for Headaches and Migraine Disease
• International Headache Society
• Migraine Disease
• Migraine Research Foundation
• MigraineCast (podcast)
• My Migraine Connection
• National Headache Foundation
• National Migraine Association
• Relieve Migraine Headache

HAWMC Prompt 10: Post Secret

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is Post Secret: write down a secret that... really isn't a secret. It can be a misconception about your condition, something people would think you'd be too shy to disclose (but you will), or just something you want to shout from the rooftops. Honestly, I wasn't sure what the Post Secret community/blog was until I read this prompt, so this was interesting.

My secret (that really isn't a secret) is: There is NO cure for Migraine!

Even when someone finds a treatment that is working "well" (this is a relative term), this doesn't mean that they're cured. There's NO magic pill or magic treatment that will just take all the pain away forever. Some treatments may prolong the time between migraine attacks, make the migraine attacks shorter, make the migraines less debilitating, allow someone to function more, etc... but that doesn't mean any of them are cures for Migraine.

Let me use my own experience as an example... I had my neurostimulator implanted in December 2010. Suddenly, everyone expected me to have zero migraines. Any time I had any headache or migraine pain, people would ask, "What? The stimulator isn't working anymore?" or "I thought the stimulator was supposed to stop the migraines?" It's not a cure, it's a treatment. The stimulator has helped some, but my body is still trying to adjust to having it implanted. I'm functioning more than I was before I had the device. Even though it's still not "normal," it's an improvement from the daily misery I had before.

HAWMC Prompt 9: Health Activist's Choice

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is Health Activist's choice. I think I've been spoiled by having a prompt provided to  me daily because this is actually more difficult. Perhaps it's because I've just been unsure of what else to write about.

I'm really enjoying the challenge. I'm proud of myself that I've almost completed the first third of the month successfully. I've struggled to write some (due to migraines, tingly hands, inability to concentrate, or lack of creative juices). But, I know that much of that comes in waves, so I try to get some posts at least started ahead of time. I enjoy stretching my writing skills beyond what I normally do. Even though these exercises aren't my strengths, it's pretty enjoyable. I guess I really am a writer at heart.

Frustration: Loss of Independence & Lack of Compassion

The theme for the April 2011 Headache & Migraine Disease Blog Carnival is: "What frustrates you most about living with a headache disorder or migraines?"

There are PLENTY of things that frustrate me about living with Migraine! Perhaps the most frustrating things are: the loss of independence and the lack of compassion.

LOSS OF INDEPENDENCE

I've lost a lot of the independence that I had prior to my car accident. I used to live a very fast-paced life, always doing so many things. I enjoyed being outside, walking, jogging, lifting weights, etc... I loved reading and having intellectual discussions, I always loved a good challenge. I've always been pretty thrifty, but I was living comfortably and saving (financial independence).

NOW, my life has slowed down so much. There are times that I'm unable to do anything, or just able to do one thing at a time. I stay inside (and my apartment has dark curtains and dim lighting) as much as possible because the sun is horrible to my head. I rarely do any kind of exercise because I can barely even stand up without feeling dizzy and lightheaded, plus the movement often contributes to a Migraine. I have to be thoughtful about what/when I eat (to make sure I don't eat trigger foods/drinks, to make sure I eat/drink enough, etc...). I often have trouble preparing food for myself, bathing myself drains my energy, and I'm unable to do a lot of the household chores. I'd love to spend my time reading, but I can't... or at least nothing longer than a short article (trouble with visual disturbances, concentration, memory, recall, etc...). I also have trouble just thinking/speaking... my mind doesn't process quickly anymore (sometimes, at all), I often can't think of the words I want/need to use, and I have difficulty following a conversation. Financially, I've had to learn how to budget for two people, plus we have much less income... with rising health bills, increasing gas and food prices, and amidst a wretched economy. I'm definitely still in the process of trying to get used to the limitations that I now have.

LACK OF COMPASSION

It's very frustrating how inconsiderate and/or uncompassionate people can be. This may be due to several different factors. First, they may have no frame of reference. If they have never had a Migraine attack or lived with chronic pain, there's no way for them to comprehend what it's like to be in non-stop pain. Secondly, they may not understand Migraine disease. They may only know some of the common misconceptions about Migraine disease (e.g., that Migraine is just a "bad headache"). Third, they may not understand that something that is "invisible" can be debilitating/disabling. The phrase "out of sight, out of mind" may be how they think of illnesses... since they can't see the effects of the pain/illness, then it must not be there. Lastly, they simply may not know what to say or how to respond/act.

HAWMC Prompt 8: Health Poem

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a poem (5-15 lines), where every line is a health question.

Why am I always in so much pain?
Why do I have so many sleepless nights?
Why do I frequently experience the side effects, but rarely the benefits, of medication?
Why do some treatments seem to work some, and then stop working at all?
Why are there always so many unanswered questions?

HAWMC Prompt 7: Voicemail for Migraine

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to leave my condition a text or a voicemail:

Migraine: You have reached migraine, I can't answer the phone right now because I'm busy causing hell... Leave a message after the beep. *BEEP*

Me: Hi, it's me, again. I'm just calling to find out what's going on?! I'm so tired of this constant pain, and I don't understand why you're being so resistant to the treatments I'm providing for you. You don't really need to call me back... just get on board and make some changes for the better... please! Oh yea, if you feel like just leaving, you know... FOREVER... that's alright by me!

HAWMC Prompt 6: Why I Write About My Health

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to respond to this prompt: "I write about my health because..."

There are several different reasons why I write about my health, and specifically why I've chosen to begin writing about it in an online blog format.

Writing has always been very cathartic for me. It's a way for me to work through my thoughts and emotions. I've struggled so much, especially since my car accident. It was a huge step to get to a place where I could write any of it down at all... it actually made it more real or something.

One of the reasons I started writing on the computer was that I simply wasn't able to hand-write in a journal like I had been doing before. My injuries from my accident included problems with my neck and shoulder, so there was just too much pain. Typing wasn't a whole lot better/easier, but I've been able to do it for longer periods of time and get my thoughts out quicker (even though I'd still prefer to write in an old-fashioned journal).

I started a blog as an online journal. I've always enjoyed being able to be there for others and help them through tough times. I thought that maybe by sharing what I was learning about my illness and by sharing my experiences... that others might be able to learn something and be helped in some small way.

HAWMC Prompt 5: Haiku & Tanka

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a haiku for my condition (migraine). Haiku is "a form of Japanese poetry, consisting of 17 moras, in three phases of 5, 7, and 5 moras respectively." No rhyme or meter scheme is employed. Rather, the aim is to create something greater than the sum of the parts. Haiku were traditionally poems written about nature, and included a "season reference."

Migraine agony
brings uncertainty and fear,
throbbing pain and tears.

Ambitious Activist Challenge Add-on: Make your Haiku into a Tanka. Tanka is a type of Japanese poetry that "consists of five units (often treated as separate lines when Romanized or translated) usually with the following pattern or onji: 5-7-5-7-7... Tanka is a much older form of Japanese poetry than haiku."

Chronic migraines are
hard on mind, body, and soul.
Head pain, nausea,
Sleepless nights, daytime fatigue,
shattered dreams... my life has changed.

HAWMC Prompt 4: Ridiculous Headlines & Cures

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write about a ludicrous headline or cure for my condition. The internet is rampant with examples of misinformation and quackery... it didn't take me long to look up and find a ludicrous headline/cure for migraine. (I know that I've been told A LOT of different - often ridiculous - "cures" and treatments to try by various people, but my migraine brain isn't working right now... online sources will have to do today).

Headline: Why sex can cure your migraine
Cure: There are various different treatments discussed in the article, including "sexual healing." However, it never actually states in the article that any of them "cure" migraine.
Link: http://www.thesun.co.uk/sol/homepage/woman/health/health/3443445/Why-sex-can-cure-your-migraine.html

Headlines: How to cure a migraine
Cures: These 3 little articles claim to have cures for migraine. The first article discusses the effectiveness of peppermint oil for headache relief. The second article lists some steps to take to help relieve headache pain. the third article claims to have a natural cure for migraine (feverfew), and then lists some steps to take to relieve pain.
Links: http://www.ehow.com/how_4503957_cure-a-migraine.html, http://www.ehow.com/how_6055338_cure-migraine-headache.html, http://www.ehow.com/how_2310161_naturally-cure-migraine.html

What is strikingly clear from these articles is the mis-use of the term "cure." There is NO cure for migraine. There are treatments that can help relieve the symptoms, but there is NOT a cure. What all of these articles have in common is that they use "cure" as a synonym for "treatment." This got me thinking... I've known that "headache" and "migraine" are often (incorrectly) used interchangeably, but I hadn't really given much thought to the terms "treatment" and "cure" being used interchangeably (I knew that people threw the term "cure" around way too loosely, but I never connected the dots that people might be using it in the same way as "treatment"... two completely different things). I'm not sure what to really do with this revelation right now... So, I'll end with a little cartoon that I ran across...

Help: A Four-Letter Word

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Hayzell, of possibilism.org, is hosting the April edition of the PFAM blog carnival. This month's topic is: "Is help a four-letter word?"

Hayzell writes:

But nothing is simple with pain or illness. Help becomes a complicated "damned if you do, damned if you don't" scenario laden with conflicting emotions and mixed messages. When your predicament isn't obvious to others, people may not recognize that they can or need to help. Likewise, when your problems seem like everyday nuisances rather than full-blown catastrophes, you may avoidasking for help or recognize that you should. Why is it that asking for too much help makes you "helpless." but not asking enough makes you guilty of "not verbalizing your needs?" Where is the sweet spot between "toughing it out" and "being dependent?"

I've always been a very independent individual. I never wanted to be one of those women that needed a man. I wanted to be able to provide for myself... to be able to stand on my own two feet and take care of myself. However, chronic pain put me face-to-face with some things in life that I've always struggled with.

Sharing with others. I've always had trouble letting others get close to me. For example, I used to never let other people read my writing because it's so personal. It's actually been a strange occurance, since my chronic pain began... I've found myself shutting off around people that I perceive don't understand or care (I'm working on being more forgiving and not just shutting down). But, with people that I feel really care or at least somewhat understand (especially those that I've met through the online blogging community), I've been much more real and open with. I feel more comfortable in sharing a glimpse into what my world is really like. It's such a good feeling to share your heart and your world, and allow others to see such a vulnerable side of you... it's still a little scary... but I feel that God is calling me to write, and the only way I know how to write is from my heart.

Asking for help. I've never been "good at" asking for help. I like to be able to do things "on my own." But, there are times that I simply cannot do things for myself, and I have to ask for help. I'm getting better at asking my husband for help, when I need it; but asking others for help is more of a challenge. I really hate needing to ask for help. I appreciate my husband so very much. He takes good care of me, and he never makes me feel like I'm weak and dependent (though that's how I sometimes feel). He knows where my limits are... sometimes better than even I do. He helps me respect and stay within my limitations, so that I don't have to pay dearly later for it.

Asking for help can be even more difficult because I have an invisible illness. Since people cannot see my illness (as they would a visible illness), they think I look "fine"... capable of doing things without needing any help or assistance. It's difficult enough to muster up the courage to ask for help, but it's humiliating to be looked at with disbelief and treated as though you're making up the pain in order to get attention or something. I hate having to try to defend that I even have an illness or disability; and at some point, I guess I just stopped even trying.

Helping myself. I'm even worse at helping myself than I am at asking for help from others. However, chronic pain has made it clear that it's incredibly important to help and take care of myself. One of the main obstacles that I've had to overcome is simply to allow myself to ask for help (from myself and others). This is definitely an area that I'm going to have to continually work on.


"Refusing to ask for help when you need it is refusing someone the chance to be helpful." ~ Ric Ocasek

Update:  The PFAM Carnival is live. Check it out here.

HAWMC Prompt 3: Health Q&A

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a health question and answer it. I've decided to share a question that I'd be thrilled to never be asked again:

Why don't you just take a few Acetaminophen (Tylenol) for your migraine, and continue on with your day?

This question irritates me to my very core. I just want to answer by saying,

"Wow! That's a wonderful idea! I can't believe I never thought to try Tylenol. I'll definitely have to give that a try (for my chronic debilitating migraines)."

OR

"Because taking Tylenol would be just as effective as eating Tic Tac's. I can't even 'continue on with my day' after I take my prescription medication... you really think that Tylenol is going to do the trick?!"

Instead, though, I respond by simply (and briefly) saying that Tylenol doesn't help my migraines.

HAWMC Prompt 2: Word of the Day

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge was to look up the word of the day on dictionary.com, and then write a post inspired by the new word. There's an "Ambitious Activist Challenge Add-on," which is to pick 5 new words and work them all into your post (and try to link them to your condition). I've always been an over-achiever, and I love taking on new challenges... so, of course, I'm going for it. I chose my words by looking up previous words of the day for my birthday (March 31).

• bivouac [biv-oo-ak, biv-wak] - a usually temporary encampment in the open; also, to encamp
• contretemps [kon-truh-tahn] - an inopportune occurrence; an embarrassing mischance
• xenophobia [zen-uh-foh-bee-uh] - fear or hatred of what is strange, foreign, or different
• edacious [ih-dey-shuh s] - devouring; voracious; consuming
• approbation [ap-ruh-bey-shuh n] - formal or official approval, sanction, or commendation; also, praise; an obsolete word for conclusive proof

When I first started getting migraines, I sheltered myself in a sort of bivouac - finding relief in random dark, quiet spaces. However, a bivouac can only stand so long before it gets tattered and can no longer provide protection from the enemy... in my case, migraine.

Then, the migraines became an edacious monster that disrupted every part of my life. It's hard to believe that a single contretemps could lead to so many changes. My relationships are different... many of my relationships have ended because of my chronic illness.

Dealing with so many changes in one's life (especially if they occur in a short time) can lead to xenophobia - not necessarily being afraid of or hating all strangers or foreigners, but having a fear or dislike for things that are strange or different. When you have chronic pain, you often try to surround yourself with things that make you comfortable... things that are familiar. It can be difficult to step beyond that comfort zone.

Living a life with chronic pain can be very lonely sometimes. I know that my emotions are often up and down like a roller coaster. Even though I don't need approbation, it's nice to be recognized and feel acceptance at least in an informal manner.

HAWMC Prompt 1: Acrostic

I've decided to participate in WEGO Health's Health Activist Writer's Month Challenge (HAWMC). I've been out of the writing/blogging world for a little while, so I hope I'm able to keep up. Luckily, they're providing a daily blog prompt. I'm looking forward to seeing what prompts there are and challenging myself to write in ways that are out of my comfort zone.

Today's challenge is to write an acrostic using the letters in the word HEALTH or for my condition (MIGRAINE), so I've decided to do one for each. An acrostic is a "form of writing in which the first letter, syllable, or word of each line, paragraph, or other recurring feature in the text spells out a word or a message."

HEALTH

History - It's important to know your medical history. And, especially if you're experiencing chronic pain, you should consider keeping a pain diary/journal.
Endurance - Being chronically ill often results in your mind and body enduring a lot. It can be very exhausting and discouraging, but it can also be a chance to learn and grow.
Assistance - Needing assistance (from other people, as well as from various tools and resources) can be very embarassing and humbling. It can be hard to ask for help... it's definitely a learning process.
Limitations - Learning to function around the limitations imposed by one's health issues can be incredibly difficult, but it's an important step toward acceptance.
Tested - Relationships, identity, emotions, faith, financial security, etc... can all be tested during times of illness. These tests can be very difficult, but they're opportunities for growth.
Hope - There is always reason to have hope for a better tomorrow... working toward an increased acceptance of one's health issues and situation.

MIGRAINE

Medication - Migraine is often treated with medication. Preventive medications are often used (in addition to abortive medications) in the treatment of chronic migraines.
Invisible Illness - Migraine is an invisible illness. This often leads to mis-conceptions and mis-understandings.
Genetic - Migraine is a genetically-based illness.
Routine - It's important to have and keep to a routine. Changes in eating and sleeping habits, for example, can be a trigger migraines.
Aura - Some people with migraine experience an aura, which is usually a visual (though it can be sensory, motor, or verbal) disturbances, prior to a migraine attack.
Incapacitating - Migraines can be debilitating, leaving the individual incapacitated for varying stretches of time.
Nausea - Many people with migraine experience nausea (to some degree) with their migraines.
Empathy - Experiencing migraines can lead to a stronger empathy and understanding for others. "Be kind, for everyone you meet is fighting a hard battle" ~ Plato