Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.

Monday, April 30, 2012

Pain & Gratitude

I wrote this last fall in my hand-written journal, but I've been adding to my list (off and on). I thought of the journal entry the other day, so I thought I'd go ahead and share it on my blog.

*** Let me preface this by saying that this list is looking at things to be grateful for... that's definitely not to say that I don't want to work, or even long to be able to work... it's just something that isn't a burden to me during this time of living with so much pain and disability, and that's something I'm thankful for. ***


I've been struggling a lot with migraine pain, which is an ongoing reminder of all the things that my illness has changed and/or taken away from my life. But, I read an article today about cultivating gratitude by thinking of things I like about being sick. I hope to be able to expand and embrace the list of things to be grateful for about my illness. But, the first step is to start writing, so here goes...

Things I like about being sick (pain and gratitude):
  • I don't answer to an alarm clock.
  • I don't get stuck in traffic daily.
  • I have the perfect excuse to avoid events I don't want to attend. (I really don't like thinking of it as an excuse, but I do have to be much more mindful of what events I do and don't attend because my health will punish me later)
  • My "to-do" list is very short. (I don't know where I was coming from with this one... I have a long, ongoing to-do list)
  • I'm ill / sick in the Internet Age - less isolation because easily connected online to others.
  • I don't have to go to work.
  • I don't have a job I hate.
  • I don't have to deal with ignorant coworkers and employees (or dealing with office politics).
  • I get to spend a lot of time with Jeremy.
  • I've learned a lot about my health issues and medications.
  • I have time to read and write (still having trouble mentally, but blessed with the time to).
  • I don't have to buy new dressy clothes for work (or wear uncomfortable dress clothes/shoes).
  • I get to wear comfortable clothes (house clothes) a lot.
  • I don't have to shower very often. (can't believe I just said that!)
  • I've had a chance to connect with some amazing people online.
  • I notice and celebrate "the little things."
  • My diet has improved (much healthier).
  • I have time to cook (and try new recipes) with Jeremy. (often too nauseous to, but been able to do this more)
  • My life is less scheduled.
  • I have time to watch more movies and TV shows.
  • I'm more attuned to what's going on with my body.
  • I'm learning to live in the present moment better.
  • I can make Jeremy's work-lunch on (at least most of) his work days.
  • I have more time to pray and spend time deepening my relationship with God (I do need to work on this more, though).
  • My home is my world (or a very big part of my world).
  • I can go to bed and get up late.
  • I've become a cyborg.
  • I know so much about meds that I could almost be a pharmacist (and I recognize many meds on TV shows) - lol.
  • I save money on gas because I don't really drive anymore.
Trying to focus less on the things that I've lost or the limitations imposed on me by my illness... really trying to be grateful for the "little things" and enjoy the present moment.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Word Cloud

Today's challenge is to make a Word Cloud with a list of words that come to mind when I think about my blog, health, or interests. I really enjoyed this one!


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Sunday, April 29, 2012

My Ongoing Battle of Sleep

My life seems like an ongoing battle. While I'm awake, I battle to balance life; face the struggles, limitations, and fears of life with chronic illness; and strive to live in the present moment. While I'm asleep... well, I don't feel like that's been happening much, especially lately.

I've had sleeping difficulties for as long as I can remember. However, chronic pain adds a whole new dimension to the struggle. I seem to go through varying phases of sleeping difficulty... usually from bad to horrible. The sleep problems I have can be any combination of these:

  • Mind going / racing
  • Trouble getting to sleep
  • Waking up through the night
  • Disrupted sleep
  • Stressful dreams and/or nightmares

Resulting in... NO REST!

It's been especially bad lately, and I'm not sure why. I've tried Melatonin before, and it actually made me wake up more often throughout the night.

I've tried Ambien, as well as Ambien CR. The CR usually helps me to sleep, but I've recently had additional, scary symptoms with it. Even when I took it (occasionally) in college, I might do say or do things between taking the medicine and getting to sleep, and have no recollection of it (nothing like sleep-driving... but I learned to take precautions like keeping any technology away from me, so I wouldn't unknowingly call/email and say things I didn't mean). Now, though, I get really paranoid and jumpy. I normally don't really remember what happened, or things are at least very foggy. But, it kinda scares Jeremy... and me, in the moment. I wake up anytime I think I hear something, and I even freaked out the other night at wind outside and my hair brushing up against my arm.

My doctor has tried using meds to help with my chronic migraines, as well as my sleep (trying to kill two birds with one stone); but nothing has helped. He's most recently had me trying Benedryl, which was in the hopes of helping the sleep situation and my bad seasonal allergies. But, I've stopped taking it because I was increasingly having trouble getting to sleep.

I've tried the "sleep hygiene" rules found in articles, and they're completely unhelpful. If I just lay in my dark bedroom, doing absolutely nothing (no distractions like technology or anything), I still don't drift blissfully into sleep, like the articles suggest. No! I lay there feeling tortured by my mind and body. I'm actually so thankful for my Kindle and my iPhone. I never wanted to have any kind of technology in the bedroom, but it's actually been such a life saver for me. It gives me something to do, while I wait to fall asleep (or pass out) out of exhaustion and/or boredom. Not ideal, but necessary right now.

I'm to the point of desperation now. :( I haven't been able to get to sleep until at least 3:30 or 4am (regardless of when I start trying to go to sleep), most nights. I keep having horrible dreams and nightmares that have me waking up in a panic. And, I often wake up frequently through the night. It's worsening my daily headaches and migraines, and the anxiety around bedtime and sleep is getting out of control (vicious cycle). I'm in bed so late in the morning because I'm desperately trying to get some rest... it's not that I'm lazy! I'm sooo stinkin' exhausted, yet sleep continues to elude me.

I've been trying to hold on to my faith and trust in the mercy, love, peace, and hope that our Savior offers us... so that I can live the best life possible, in the circumstances I find myself in... regardless of how miserable things are at the moment.
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." (Matthew 11:28-30)
"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40:28-31)
This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Six Sentence Story

Today's challenge is to focus on brevity by telling a story in only six sentences. While I'm not a fan of (or very good at) "micro-blogging," this was an interesting writing practice.

A Pretty Good Day

I woke up to the ever-present pain. The little bit of light that peeks through around the black-out curtains in my room strike my eyes, as though I'm staring directly into the sun. But, I try to make the most of the day, and be grateful for the many blessings that I do have. So, I spend some time writing on my blog, texting with a few of my chronic pain friends, and enjoying the quiet of being home alone. When my husband gets home, we spend time chatting with each other and cook dinner together. I'm up late because of my insomnia and pain, but I thank God for all that He's given me... especially for the day I just had with less-debilitating pain.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Friday, April 27, 2012

5 Challenges & 5 Victories

The top 5 challenges of my health focus:
  1. Overcoming the stigma and misunderstanding that abounds about Migraine.
  2. Not allowing the words and actions of others break me down.
  3. Having to change and/or cancel plans.
  4. Being faced with so many decisions - about self-care, treatments, etc.
  5. Not being paralyzed by the fear associated with chronic illness - keeping it from taking over and preventing me from doing anything.
The top 5 small victories that keep me going:
  1. Individuals that comment and/or email me and tell me that my words have said what they feel but have been unable to say.
  2. Individuals that come to me to find out more about my experiences with specific treatments... it may be the first time they're being really proactive in their healthcare decisions, and I'm blessed to be a part of it.
  3. Cherish moments with lower pain (don't take them for granted), no matter how few and far between they might be.
  4. A stronger marriage, despite all of the obstacles and challenges of chronic illness (so grateful!).
  5. An incredibly loving and supportive group of people online (from blogs, facebook groups, etc). I've made some amazing friendships that I probably would never have had without chronic illness.
This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Thursday, April 26, 2012

Health Tagline

Today's challenge is to give myself, my blog, my condition, or some aspect of my health a tagline. My head isn't doing well today, so I think creativity it out of the question. For now, I'm just trying to remember...
I have several more posts from my Lessons series coming, but they're not quite done yet (and I'm not going to try to force anything today because that usually backfires huge!). So, please stay tuned...


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Wednesday, April 25, 2012

Lessons: Learning From Life With Chronic Pain

There are many lessons that can be learned, while trying to adjust and learn to live with chronic pain / illness. It can be difficult to remember to focus on the lessons and opportunities that can be found in the difficult and dark times of illness, but it's healthy to recognize that we're still growing... perhaps just differently than we previously anticipated - there are lessons I've learned over the past 3.5 years (since my accident) that I may not have had the chance to learn, otherwise (however, I wish they didn't have to be such painful lessons... oh well, such is life). Here are some of the lessons I've learned / am learning:

Never take life for granted! We aren't promised the next moment, so we must appreciate life here and now, in the present. Hug, love, laugh, share... make sure you show your love and appreciation to those that are there for you. Do it today... do it now... because everything you have today could be gone in a moment.

Enjoy the moment. This is related to the previous one. Living in the present moment is a wonderful... though sometimes a difficult and painful... lesson to learn. I like this picture and quote - I think it sums it up pretty well.

Learn how to say "no." I don't think of myself as having been a "yes" person, but I don't like having to tell people "no." Living with chronic illness has made saying "no" more of a necessity. It's not healthy for me to always say "yes" to people... not to mention, my future is so unsure / uncertain (I can't know how I'm going to be affected by my illness at any specific time) - I answer with "yes, but..." (a side note that I may have to cancel at the last minute) or "no," because I simply don't know whether I'll physically be able to do something. I have to thoughtfully consider my own limitations. Thus, I'm learning more about myself.

Trust your gut. I've always been pretty good at listening to my intuitions and trusting my gut instincts, but I randomly struggle with it. When it's related to health, things can get a bit tricky. We place our trust in doctors, and it's intimidating to even consider contradicting or questioning our doctors. But, if you disagree and / or are uneasy with the treatment plan your doctor recommends, you should discuss it with him / her. If you know that something just isn't quite right with your body, you should keep asking questions and seeking treatment (even if you have to go to multiple doctors to try to find some answers).

I feel like living with chronic pain has taught me to listen to my body better. I'm much more aware of when something I feel is different or "off." I don't think I really paid much attention to the subtleties of my body before having chronic pain / illness.

One difficulty with this, though, is that the pain can cloud your thinking. It can be difficult to judge whether something is, for example, bad enough to justify a trip to the emergency room. I know that I have a huge struggle with making any kind of decisions, when my pain gets very bad... so, I'm still working on this.

Acknowledge and accept limitations. This has been a huge struggle for me. I've never liked limitations, and especially not the strict ones that my chronic illness creates for / imposes on me. One of the most important things here, I believe, is to remember that acknowledging and accepting limitations does NOT mean you're "giving up" or "giving in" to the disease. It's just being more aware of what you can and cannot do, and living life within those borders.

I'm not able to spend much time in the sun. I have to break up tasks into baby steps. I have to take frequent breaks. I have to take so much into consideration, when deciding whether or not to do something (where it's at, what the lighting / sound / smells / etc will be like there, who will be there, how long I'll be out, how much walking / standing / sitting is required, etc...). It's definitely an ongoing process to accept the limitations and learn to live with / around them, but I'm learning.

Learn to be flexible. I've always been a planner, and I can't do that anymore because I can't know how I'm going to feel in the future (even in the next 5 minutes). I'm learning how to plan differently, by making lists of things that I need (or want to do) - I write if there's a deadline or specific priority to it, otherwise I don't put a date on it and just tackle things as I feel able to.

My husband and I are having to learn to "wing it," by just taking things one thing at a time. That sometimes means we cancel plans at the last minute, which both of us absolutely hate - we don't like it affecting / impacting other people. We've actually brought some humor to the necessity to "wing it" (much thanks to my husband for always being able to make me smile / laugh) - it makes things a bit more bearable, but it's still frustrating (especially when it impacts others).

Be patient. One of the lessons that can be learned from living with chronic illness is patience. What a huge challenge this is for me! Being patient is reinforced by many of the challenges and limitations we face - we live each moment not knowing what the next moment will hold... when the pain is going to worsen or return. It's a learning process to be able to live in the moment and truly enjoy what is happening in the present.

Learn how to ask for and accept help / assistance from others. I'm so used to being the one to help others... it has been very difficult for me to learn how to ask for help from others... and then to be able to accept that I need help, as well as the help that others offer me. It's an ongoing process, but I've gotten better at it. I don't like feeling that I can't do so many things, especially simple things that most people never consider to be a challenge at all. But, I've found that it's usually more painful to refuse to ask for help, than it is for me to accept the help of others... if nothing else, it's easier on my physical health... it's still a struggle emotionally.

There are many other lessons I've learned and / or am learning, but these are some pretty important ones.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Tuesday, April 24, 2012

Lessons: From Suffering to Empowered

When you're diagnosed with a disease that is incurable, it can throw your life into a tailspin. All of a sudden, your life comes to a screeching halt. You're forced to focus on making it through each moment... hour... day... and simply taking life one tiny step at a time. Everything you've hoped and dreamed for your life comes crashing down around you, and uncertainty takes over. All of the things that you used to enjoy doing, you're suddenly unable to do. And, if you have an invisible illness that comes with stigma attached to it, you can't depend on a whole lot of compassion and support... even from some people that you thought were closest to you. People tend to fear what they don't know or understand, so many people simply detach themselves from the situation... leaving the person living with chronic illness feeling increasingly isolated.

I've actually read that some people living with chronic diseases actually wished their diagnosis had been cancer, instead of whatever they have. It may sound crazy, but I can sorta see where they're coming from. Of course, they don't really wish they had cancer and are by no means belittling cancer's severity... but, it would be amazing to have the same respect, compassion, understanding, and support that's given to cancer patients.

There may be less understanding and compassion for many of those living with chronic illness, but we can't just sit around and feel sorry for ourselves. We must learn to move from a suffering patient to an empowered individual. Some of the lessons that can help move us toward empowerment, include the following.

Be your own advocate. I've had to learn to be an advocate for myself. I don't blindly take advice from anyone, including doctors. There is no cure for Migraine, period. I'm simply doing my best to work with my doctors to find some way of improving my life, despite having this illness.

Let it go. This one is difficult for me, and I'm guessing that it will continue to be difficult... but I'm really working on it. I think there are several things I need to let go of, including:
  • My fears and anxieties - I must hand these over to God. Allowing myself to get wrapped up the many fears and anxieties that inevitably come from living life in chronic pain helps no one. I don't want to be frozen in fear, and let life pass me by. 
  • What others say and/or do - I can't let other people's thoughtlessness upset me. Whether or not others choose to try to understand what I'm going through, to be compassionate about what I'm going through, etc... is NOT up to me. It can be hurtful, but it's out of my control. All I can do, is love myself enough to do what I need to do to be as healthy and live as good a life as possible.
  • The effects of my illness - I need to let go of the times that I have to turn down an invitation or miss an event. I can't control when the pain will be that bad (or how others will respond to canceled plans)... I need to learn to be more forgiving of myself when it happens (and, again, not be affected by how others respond / react).
Celebrate tiny milestones. Since so much of life becomes taking baby steps, it's important to remember to celebrate even the smallest of milestones. While others may not think that taking a shower, for example, is an achievement, it may very well be a big one. Give yourself credit for the steps you're making toward living the best life you can with chronic illness.

Find joy in new and/or different ways or things. You may not be able to do many of the things you once enjoyed and were good at, but that doesn't mean you can't do anything. Explore new areas and interests, and you might just find a hidden talent that you may otherwise have never have discovered. It's extremely difficult to lose the things we thought we valued so much, but living a life guided by trust in God can open us up to a whole new world and to opportunities that we never even considered or thought possible.

Decide you're going to go forward. Illness and disease can be an obstacle that you sit back and give in to OR it can be a challenge that you learn to live with and succeed despite it. Let this propel you forward into the future before you. Allow yourself to see where you've been, and where you are now... but you can't focus solely on what you've lost. Until there is a cure, you have to come to terms with the fact that there is a new normal - this is the new life you have to live... choose to live it!

Lessons Series:
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Monday, April 23, 2012

Lessons: Learning the Hard Way (Part 2)

© Jamie Valendy
Accident Disability
Fast-forward to October 10, 2008. I was in a car accident that ended up changing my life forever. In one moment, so much was taken away from me... and, I didn't even know it until much, much later. Chronic, debilitating migraines began, as well as bad shoulder and neck pain... my life was flipped upside-down.

By this time, I had mostly come to terms with not being able to participate in sports. But, my self-image was based very much on my intellectual ability. I was an organized, driven, hard-working, and smart person. I loved challenging my mind!

Suddenly, I couldn't remember things that were said or happened a few seconds beforehand. The accident took the parts of myself that I identified with and shattered them into tiny, unidentifiable pieces. I couldn't think logically, I couldn't remember anything (I had LOTS of pieces of paper with notes on it, especially when I was dealing so much with my attorney and the insurance companies because I didn't want to forget anything that was said...), I couldn't solve simple problems, etc. To say that I was frustrated would be a huge understatement! I felt completely helpless... and I spiraled into depression.

I lost a lot of my independence, which was very difficult for me. I've always been a planner, and now I can't really plan because I never know how I'm going to feel. I don't really drive anymore because of visual disturbances and sensitivities, and I'm still jumpy in cars (though it's much, much better than it was the months following the accident). I sometimes have trouble being able to take care of myself (showering, cooking, eating, sleeping, etc.), and I haven't been able to work. ...And, it was all due to someone else's actions, which happened in just a moment.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Lessons: Learning the Hard Way (Part 1)

I didn't get this finished the other day (when the prompt was given for the HAWMC), but here we go... I'm sure that there are many things I've learned the hard way over the course of my life. The one that comes to mind now is that things can be taken away from you in a single moment.

Sport Injuries
© 2002 Jamie Valendy
(I'm in the front)
I used to play softball and run. I loved to do both so much. They helped me work through some difficult times, and they provided an outlet for all of my emotions (both positive and negative). I made some great friends, and I learned a lot about myself.

© 2002 Jamie Valendy
On April 6, 2001, excruciating pain started in my left hip, while I was warming up for a track event. I found out that it was an overuse injury (tendinitis bursitis) - I think I worked out about 4-6 hours a day (between high school track/cross-country, pitching lessons, and both high school and recreational softball), so it really shouldn't have been a surprise. It was my choice to work-out so much - I loved the thrill of the competition, of challenging myself to get better, and reaching goals. So, as difficult as it was, I paused my participation in competitive sports and went to physical therapy. I did just as the therapist told me to, including taking time off from impact workouts (i.e., running). Once he began to let me start jogging / running, he slowly increased how much I could do. My coach told me not to run faster than a 10 minute mile... then a 9 minute mile... and faster, as my hip seemed to heal. I always finished almost exactly at whatever speed / time he would let me run, even though I was itching to run faster and push harder. Eventually, I was able to start joining in some of the team workouts, but my coach wanted me to completely heal before running competitively again. I was able to run in the last few cross-country meets of the (fall) season, and I actually ran a personal record.

© 2002 Jamie Valendy
(I'm on the left, #3546)
In August 2002, when cross-country practices approached, I was excited. But, before the season began, I woke up one day and couldn't move because my back was in so much pain (I happened to be staying at a friend's house, where we all just laid out on the floor). I had to go back to physical therapy for that, and I ended up missing out on running and playing softball during my senior year of high school. It broke my heart! I still miss being able to compete in sports so much.

My ability to compete in the sports I loved so much was a HUGE loss for me, and I've had trouble dealing with it. But, perhaps it prepared me for the larger loss that was to come years later...

Okay, so apparently I have quite A LOT of things to say, so I'm going to let the words come out, and then split them up into a series called, Lessons. I'm not sure how many blog posts it will end up being, but I'm interested to see where things take me.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Sunday, April 22, 2012

The Things We Forget

I know I haven't posted much in the last few days, but I'm still here. I started writing a post, and it's ending up being a series of five or six posts... oh goodness. It's exciting for me because I've been in a writing zone, but I'm just not quite ready to push "publish" yet... so, please stay tuned.

Today's challenge is inspired by the blog “The Things We Forget.” http://thingsweforget.blogspot.com/. So, I went to superstickies and made some short memo reminders that I enjoy (and need to hear / remember).
 
 
This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Friday, April 20, 2012

National Take Back Initiative

There's a National Take Back Initiative taking place April 28th (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.

Got Drugs? Banner


The Drug Enforcement Administration (DEA) has scheduled another National Prescription Drug Take Back Day on Saturday, April 28, 2012, from 10:00 am - 2:00 pm. This is a great opportunity for those who missed the previous events, or who have subsequently accumulated unwanted, unused prescription druges, to safely dispose of those medications.

Americans that participated in the DEA's third National Prescription Drug Take-Back Day on October 29, 2011, turned in more than 377,086 pound (188.5 tons) of unwanted or expired medications for safe and proper disposal at the 5,327 take-back sites that were available in all 50 states and U.S. territories. When the results of the three prior Take Back Days are combined, the DEA< and its state, local, and tribal law-enforcement and community partners have removed 995,185 pounds (498.5 tons) of medication from circulation in the past 13 months.

"The amount of prescriptions drugs turned in by the American public during the past three Take-Back Day events speaks volumes about hte need to develop a convenient way to rid homes of unwanted or expired prescription drugs," said DEA Administrator Michele M. Leonhart. "DEA remains hard at work to establish just such a drug disposal process, and will continue to offer take-back opportunities until the proper regulations are in place."

"With the continued support and hard work of our more than 3,945 state, local, and tribal law enforcement and community partners, these three events have dramatically reduced the risk of prescription drug diversion and abuse, and increased awareness of this critical public health issue," said Leonhart.

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Wednesday, April 18, 2012

A Weekend Update

I just had a wonderful weekend with Jeremy. We drove down to Austin, TX to visit with family (aunt, uncle, and cousins), and to attend the wedding of one of Jeremy's college friends. The drive down there was pretty easy - 3 to 3.5 hours, and it was cloudy most of the drive.

We didn't realize until we were at my aunt and uncle's house for a while that we'd forgotten all of our hanging clothes... including our clothes to wear to the wedding. So, we spent part of Saturday out shopping to find something nice to wear to the wedding later that evening. Well, at least I got a new dress out of it, right?! (hehehe)

The wedding was enjoyable, despite the teetering head pain and high winds. I'm so glad that we were able to go. Visiting with Jeremy's college friends was great, and I think he really enjoyed it. I most likely pushed myself too hard, but I was having a good time... and Jeremy really deserves to have time to catch up with old friends. We ended up leaving the reception early because the loud music and strobe lights were just getting to be too much for me. I wore my sunglasses on the drive home, and then we stayed up late talking with my uncle.

Sunday was a different story. I woke up with more body and head pain than I had been. I broke down and took my migraine meds. I had noticed myself yawning a lot Saturday evening, but I just assumed it was because we'd had a long, exhausting day... I guess it might've been part of the prodrome phase. I was completely indecisive... just couldn't think straight. I became quiet and mumbly through the day... all pretty normal migraine-day happenings.

The ride home took quite a bit longer than the ride down there. I felt nauseous - the combination of the migraine, meds, and moving car left me feeling so sick. I almost threw up in the car... then we couldn't find ginger ale anywhere. We stopped several times, once for dinner. I think I finally dozed in and out of sleep, toward the end of the car ride. I was sooo happy to be home!

The following day (Monday) was even worse than Sunday. I hurt so badly - indescribable, take your breath away kind of pain. It didn't even occur to me to take my migraine meds - that's how bad it was. Migraine brain really took hold of me that whole day. By the time it dawned on me to take meds, I felt like it was too late... then the pain just kept worsening and worsening until I was shaky and in tears. Prayer from a dear friend got me through the day... I really didn't know how I was going to get through the pain.

I had a bad headache yesterday, and then I got hit hard today... I've taken my meds and am going to lay down because the effects are taking over strong. Good thing I'd written most of this post a couple days ago. Gonna go try to rest away this pain.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Monday, April 16, 2012

Inspirational Pinboard

Today's challenge is to share 3 things from my Pinterest board. I have definitely enjoyed using Pinterest. I've been able to find and try new recipes, and I enjoy broadening my creative side by seeing many of the do-it-yourself projects that others are doing.

I'm struggling with my head today (after a bad migraine yesterday), so today's post is going to have to be short. Here are some inspirational words that help me through these difficult times.






This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Sunday, April 15, 2012

Writing With Style

I don't really have one single writing style.

I've always loved handwriting in a journal. However, I don't write very quickly, and I've had increased physical pain in my neck and shoulder that prevent how much I'm able to hand write before being in too much pain.

The increased pain is one reason I started online blogging. I still deal with the pain, but I'm able to get more of my thoughts out because I can type much quicker than I can write.

Most of the time, words just flow from my mind to my fingertips... whether I'm writing by hand or typing on the computer. There are times that I simply can't seem to type as fast as my mind is going, but I do my best.

I have written notes all over the apartment... it drives my husband crazy! I'm working on combining them and using the computer / tablet / phone to keep the number of paper notes down. But, sometimes it's easiest to just jot down a note on a piece of paper, so I'll have to work on utilizing my other resources more.

As far as blogging goes, I write from our computer. Sometimes the words just flow out. Other times, I "sit on a post" for months before actually posting it. Even if I'm working through stuff, and I know that my blog is constantly changing, I still feel like I need to reach a certain point of real understanding before I post something. I don't like to "publish" unfinished thoughts, which is dumb because where does it end?! Just because I publish something, doesn't mean that I can't continue to think, change, grow. In fact, it's only healthy and natural that I do! But, I'm a perfectionist... I'm working on it, though.

I tend to get some of my best writing done late at night. I used to be a night owl, but I've been trying to make and keep a better sleep schedule. But, I can't just leave so many thoughts moving around in my head... I have to try to get them out. So, I write.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Saturday, April 14, 2012

My Dream Day

So, today's challenge is to write about my dream day - "Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not, how could you make it happen?"

I've been thinking about this prompt, and I'm not sure how much I really like it. Honestly, I don't think there's any sense in dreaming about a "dream day" that may never happen. I'm trying to live more in the present, and I feel like that would hinder my efforts.

© 2009 David Madden.
One of the greatest days of my life was my wedding day. I married the man of my dreams... the man beyond my dreams. God blessed me with a friend for life - he means so much to me. So many of our family and friends were able to join us and help us celebrate our union. The day was beautiful, the migraine monster stayed away, and I was able to enjoy being with my loved ones. What more could I ask for?!

Actually, there is more... We had an amazing photographer, who captured the day just beautifully. I've always loved photos because I'm able to somehow re-live those moments in a very real way. So, I'm happy to have such great pictures around the apartment to remind me of how blessed I am. Sometimes it's surreal to see me in the photos because I look completely happy... I was able to truly live in the moment and enjoy it all. The whole day was surreal, but I soaked it all in. I haven't figured out a way to completely surrender to the present moment, since that day... but the pictures remind me to keep trying.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Friday, April 13, 2012

Who Am I?

"Who am I without my disease(s)? What makes me more than just my disease(s)?"

What poignant questions! I'm not even sure how to answer them, but I'm going to try...

Before my accident, I had finally reached a point where I felt comfortable and confident in who I was. But, that was short-lived. My auto accident in October 2008 changed my life forever. I suddenly couldn't do the things that I had been so good at. I struggled with doing things that were core to who I was. And, that threw me into quite a state of panic and depression. Suddenly, everything was different... and yet, I still felt like the "old me" was just trapped inside of a now-damaged body. But, chronic migraines... chronic pain... changes people.

I'm a woman of faith. I'm a loving wife, daughter, sister, granddaughter... I'm a perfectionist still trying to adjust to living life with chronic pain. I enjoy scrapbooking, writing, and spending time with those I love. I am blessed beyond measure. I enjoy helping others. I love with my whole heart. And, I hope my life reflects my deep love for my Lord.

I really need to give these questions some more thought, as I continue to grow and change. But, thanks for posing the questions.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC), and the April 2012 edition of the Patients for a Moment Carnival.

Things I Need & Love

Today's challenge is to write about 10 things I couldn't live without... for example, if I was stranded on an island. Well, living with chronic pain / illness can actually sometimes feel like being alone on a stranded island. My world is primarily within the walls of my apartment. I venture out as much as I can, but I spend the vast majority of my time here.

So, the things I need and want in my home now are the things I would need and want if I was stranded on an island. For this blog post, I'm going to change the prompt a bit. Here are 3 different lists: what I need / love the most, what I'd like to have, and what makes life worth living.

5 things that I need / love the most:
  1. The unconditional love of our Father in heaven.
  2. The strength and love of my amazing husband.
  3. The love and support of my parents / family.
  4. The encouragement and support of my (online) friends.
  5. The hope that there will be days with less pain in the future.
5 things that I'd like to have:
  1. A journal and pen.
  2. Scrapbooking supplies.
  3. Cell phone with internet access, so I can keep in touch with the outside world.
  4. A soft pillow / blanket / bed.
  5. Migraine meds.
5 things that make life worth living:
  1. Faith
  2. Hope
  3. Love
  4. Health
  5. Laughter
This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Thursday, April 12, 2012

Stream of Consciousness Day

Today's challenge is to: start with the sentence “_______” - just write, don’t stop, don’t edit. Post!

"I'ts about what’s going on in your head in this exact moment. What are you thinking/feeling/seeing/hearing? How do you feel? What’s popping into your head as you take in your surroundings? What conversations or interactions keep running through your mind? Stream of consciousness is about not suppressing these thoughts but letting them flow onto the page, with or without punctuation, without stopping to think about whether you’d chosen the right word or phrased something the right way."

So, here we go... I'm wondering why I can't sleep. Why I'm so anxious. Why things are getting worse. I've been having increasing trouble getting to sleep at night, often taking several hours to fall asleep (even after taking night meds)... and, now, I'm having increasing anxiety about even laying down in bed to try to go to sleep. I've also been having bad nightmares, several of which have had me waking up shaking and upset. I don't know what's causing all of this. I've had problems with sleep before (sometimes almost identical to what I'm experiencing now)... for longer than I care to remember... but, I don't understand this round of stuff.

I'm also feeling anxious about my head pain. I've actually had a fairly good few days, actually this whole week, so far. I've been able to keep the head pain from worsening, even though there have been ups and downs each day. Keeping my head to a 5-6 (on a 10-point scale) has been great this week. Some days, I was able to keep the head pain there, as well as get some things done around the apartment... other days, I had to park myself on the couch and just watch TV / do nothing, in order to keep the pain from worsening. But, I'm proud of myself for the things that I've been able to accomplish this week.

The problem is that these streaks of better days never last. The pain always returns, and it scares me. I don't want to let the fear take over because I'm trying to enjoy the bit of relief that I get, whenever I get it. I still try to pace myself, but I'm also trying to stay in the moment and enjoy feeling even just a little bit better. But, my mind wanders... and the fear comes over me like a wave crashing onto rocks. I don't want to be afraid, but it's so hard not to, when pain has become my "normal."

Right now, I think I'm most afraid of ruining this weekend. Jeremy and I are going to Austin this weekend. We're going to visit / stay with family, and attend a friend's wedding. I want so badly to be able to have a "normal" weekend... at least for my dear husband. My migraines have interfered with so many special events - I've had to miss close friend's weddings, family get-togethers, etc. I hate having to miss these things, and I hate even more when it interferes with one of the few activities / events that Jeremy really wants to attend. I know that he'll be alright and won't blame me or make me feel guilty, if we miss it... but I want to be there for him. He's so good at comforting me when I have to miss important events... I just don't want him to have to be in that position.

Well, I don't know if any of this is made any sense, but there's my 15 minutes of unedited free-writing today. Stream of consciousness day - welcome to the scattered mind of a chronic Migraineur!

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Wednesday, April 11, 2012

My Playlist: Theme Song(s)

Today's challenge was to give a theme song to my blog and/or health focus. I'm not really sure I can pick a single song... so, let's just see where my thoughts lead me today...

Music is so powerful! It truly can help us to give words to and express so many different emotions that we simply cannot explain or express any other way. So many memories are tied to specific songs, and hearing even just a few notes of the song can bring up such strong emotion. Music can help us express pain, anger, sadness... as well as pleasure, happiness, and joy... and everything in between.

I have many different types of music that I like to listen to, depending on my mood and what's going on in my life. Some of the songs that have moved me can be found on my other blog, Unfolding the Rosebud (some of the ones listed on that blog are also found below).

I previously made a playlist with songs of hope... you can check it out here, My Playlist: Songs of Hope. The playlist includes many songs that I enjoy listening to often. They have words of hope and encouragement. I hope you'll take some time to listen to some of those songs, but I'd like to share some different ones in this post.

Behind the Scenes by Francesca Battistelli
This song really speaks to each and every one of us. We all have so much more going on than what others can see from the outside.
Things aren’t always what they seem / You’re only seeing part of me / There’s more than you could ever know / Behind the scenes
 I find this especially true for those living with chronic pain / illness:
You may think / I’m just fine / How could anything / Ever be out of line? 
Sometimes I can’t see / Anything / Through the dark / Surrounding me / And at times I’m unsure / About the ground / Beneath my feet / If it’s safe and sound
It's important that we be compassionate to one another because every single one of us is fighting some sort of battle. And, we can have comfort in know that
When it’s hard to find hope in the unseen / I have peace in knowing it will find me 

I always have so many questions stirring in me, and this song speaks so well to that. I don't slow down well. I don't like that things take time, but it's the way things are... and it's more the way my life is now than it ever was before the accident. Everything takes much more time than before. It's frustrating, and it makes me wonder 'why.' There are so many questions, but I must always keep my faith in the Lord.

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." (James 1:2-3)
I wanna know why pain makes me stronger / I wanna know why good men die / Why am I so afraid of the dark, / But I stray from the light?
And I wonder why / Sometimes the truth ain’t easy to find / I wanna know all the answers / But I’m learning that / These things take time

This song speaks to the fragile nature of our human form. But, we're reminded that we're shaped by the "light we let through us," which is so true. Jesus tells us that “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life” (John 8:12).
We may shine, we may shatter... / We are fragile, we are human / We are shaped by the light we let through us / But we break fast 'cause we are glass' / Cause we are glass
It can be difficult to let others in, letting them see who you really are. But we all are fragile and imperfect. We should try not to judge one another, as we all bear our own burdens. I'll be the first to admit that I've never been very easy to get to know... I've gotten pretty good at holding others at arm's length, not letting them see me. But, I've been more open and honest, since my accident (at least here on my blog, and with those that I feel truly care and are trying to understand, rather than judge). I feel like sharing my experiences (both good and bad) is cathartic for me, and could help others. So,
I'll let you look inside me / Through the stains and through the cracks... / But try not to judge me / 'Cause we've walked down different paths

I absolutely love this song! Both the song and video are very powerful. I think the message is great for everyone that is in a dark place in their life. There is still hope, and you can battle through and rise higher than ever... "like a skyscraper."
You can take everything I have / You can break everything I am / Like I'm made of glass / Like I'm made of paper / Go on and try to tear me down / I will be rising from the ground / Like a skyscraper / Like a skyscraper
In the video, she's barefoot, making her way through a barren desert. I think the imagery is right on. In the midst of dark times, it can often feel like we're alone... trying to make our way through a barren land. But, we can make our way through it, and rise to new heights. I think skyscrapers are truly marvelous...

I Won't Let Go by Rascal Flatts
I'll leave you with a song that always leaves me in tears... but that also gives me great peace and comfort (thanks, again, for sharing this song with me, my 'lil dove).

Perhaps this would be a good song for my blog's theme song... I think this song is so beautiful! Even though I'm in the midst of my own storm, I want to help make sure that others know that they're not alone either.
It’s like a storm / That cuts a path / It breaks your will / It feels like that / You think you're lost / But you're not lost / On your own / You're not alone 
There are others out there that are facing similar challenges. And, even if I can't completely understand what you're going through...
I will stand by you / I will help you through / When you’ve done all you can do / And you can’t cope / I will dry your eyes / I will fight your fight / I will hold you tight / And I won't let go

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Tuesday, April 10, 2012

Awareness Color for Migraine & Headache Disorders

As of March 2012, we finally have an official color for Migraine and headache disorder awareness!

PURPLE

There is a website dedicated to "Fighting Migraine, cluster headaches and other headache disorders by standing united through awareness to educate, dispel the myths, and lift the stigma." The website is called Fighting Headache Disorders (...through awareness).

The following organizations have endorsed purple as the awareness color for all headache disorders:
Some groups and organizations will be using purple with variations or additions to signify specific headache disorders or subsets of a headache disorder. For example, Catherine Charrett-Dykes has been using a purple ribbon with a red stripe in an awareness campaing for Chronic Migraine on Facebook.

Much thanks to Teri Robert and Ellen Schnakenberg, who have been vital to our continued mission regarding Migraine and headache disorder awareness and advocacy.

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Sunday, April 8, 2012

Holding on to Hope

Image by jenlemen
Building and maintaining hope, when your life is dominated by Migraine disease (or another headache disorder), is both a challenge and a blessing. Living in constant pain makes holding on to hope difficult, but I've found it necessary to make it through each day... each moment.

Faith in God
My faith in God is, by far, the source of my hope. Knowing that I have a Lord that loves me unconditionally is such a comfort. I know that He will never give up on me, so I do my best to never give up. It can be very difficult to hold on to hope through the pain / isolation / etc, onslaught of other people's opinions and misunderstandings, and all of the uncertainty of living with chronic pain... but, we must remember that our God suffered too, He is always with us, He understands us, and He knows our future and will equip us to handle it.
"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future" (Jeremiah 29:11)
Today is Easter Sunday, which is perfect for explaining my hope. In His death, we see the magnitude of our Lord's love for us... and it is in His resurrection that we see the mighty power He has. There is nothing that can separate us from His love.
"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord" (Romans 8:38-39)
Christ loved us so much that He sent His son to die, so that we could have eternal hope! Hallelujah, Christ is risen!
"The angel said to the women, “Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay" (Matthew 38:5-6)
Family and FriendsI'm also extremely blessed to have a family that loves me unconditionally.
  • My husband helps me in more ways than I can ever even begin to explain. Besides loving and caring for me, he helps me to keep my faith in the Lord and hold on to hope for better days.
  • My family has supported me so much through this, too. They've taken the time to educate themselves on Migraine disease, they listen to me explain my experience of it, and they share their love and support with me.
  • My friends (especially my chronic pain online friends) each help support me, indifferent ways. My online friends and I are able to support each other in ways that many others cannot help support us because we all experience chronic pain and all of the obstacles that come with that. They offer me such love and support; and they help hold on to hope when I need help and can't do it myself.
Writing & Blogging
Writing has always been cathartic for me. I find a lot of peace and comfort in writing. It allows me to express myself in ways that other activities / outlets can't. When I write, I'm frequently reminded of how great our God is because He has given me the ability to write. What a wonderful gift to have... it gives me hope that He can still use my life to touch others.

Along the blogging journey I've had so far, I've come into contact with quite a few people, several of whom I've been able to help. What a blessing to be able to help others by sharing my experiences and offer support for their own journeys.

Here are some Scripture verses of hope:

  • "Through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us" (Romans 5:2-5)
  • "For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently" (Romans 8:24-25)
  • "Be joyful in hope, patient in affliction, faithful in prayer" (Romans 12:12)
  • "For everything that was written in the past was written to teach us, so that through the endurance taught in the Scriptures and the encouragement they provide we might have hope" (Romans 15:4)
  • "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit" (Romans 15:13)
  • "Now faith is confidence in what we hope for and assurance about what we do not see" (Hebrews 11:1)
I previously made a playlist with songs of hope... you can check it out here, My Playlist: Songs of Hope.

Migraine disease may take away a lot of things in my life, but my hope is not one of them. I refuse to let this disease define or destroy me - it will not win! I will continue to do my best to hold on to hope!

Image found here
This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC), and the April 2012 edition of the Headache and Migraine Disease Blog Carnival.

Saturday, April 7, 2012

Artificial Sweeteners

So, today is "Health Activist's Choice," so I'm going to actually finish one of the blog posts that I started a while back.

I've known that aspartame, NutraSweet, sucralose, Splenda, and any other artificial sweetener can cause problems for Migraineurs, but something that was mentioned in an article titled, Migraine Triggers: Artificial Sweetener, go me thinking...

I've known for some time that I'm sensitive to artificial sweeteners. But, my tolerance for migraine triggers have definitely changed since my auto accident in 2008.

I was thinking back to the years before the accident, and it occurred to me that I used to drink Crystal Light (contains aspartame) almost daily while I worked. I had headaches (I experienced migraines, too, but not frequently), but I always attributed it to long / unusual work hours and stress. I didn't notice any correlation with consuming aspartame.

I also remembered that I had told my mom a little while back that I used to get headaches when I ran - cross-country and track (middle- and high- school). What just occurred to me was that it might've, at least in part, been due to all of the gum I used to chew. I always had gum in my mouth when I ran and/or played softball. And, since the dentist was so concerned about cavities, I chewed the sugar-free gum... which has aspartame. I know I'm sensitive to aspartame, and I wonder if that's actually part of what my "workout headaches" were. It's an interesting thought.

I loved running so much (they helped me deal with every emotion - depression, anxiety, fear... and even happiness... I also thrived off the competition and I loved being able to push myself harder and reach my goals)... I guess I just dealt with the headaches. I should note a few things here... these were headaches, not migraines. I was still able to function. Even if they were moderately severe, they improved as I cooled down and re-hydrated after a run... my migraines don't improve with much of anything really.

Anyway, it's interesting to me how what we eat and drink can affect us so much. Even things like the type of gum we chew can trigger headaches in some of us (I don't even chew it anymore - between the chewing motion and the choice of sugar / cavities -or- aspartame... it's just not worth it).


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Friday, April 6, 2012

Health Haiku & Tanka

Haiku is a “miniature Japanese poem consisting of 17 syllables – 5 syllables in first line, 7 in second, and 5 in the last. No rhyme or meter scheme is employed when writing haiku. The aim of the haiku is to create something greater than the sum of the parts.” I wrote a haiku during last year's challenge - HAWMC Prompt 5: Haiku & Tanka. It was a bit more difficult to write this year, but here's what I wrote:
Living life with pain
and growing uncertainty
means my life has changed.
     * * * * * * * * * * * * * * * * * * * * * * * *
Migraine agony,
Why do you do this to me?
Please leave me alone.
And, I'm feeling a little ambitious today, so I'm going to include a tanka (which I also did in last year's challenge - HAWMC Prompt 5: Haiku & Tanka). Tanka is a type of Japanese poetry that "consists of five units usually with the following pattern or onji: 5-7-5-7-7."
Horrible migraine
Why do you always show up
To ruin my day?
You interrupt my whole life
And leave me wondering why.
This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Thursday, April 5, 2012

Ekphrasis Post - Darkness & Light

I've written a couple Ekphrasis posts before (HAWMC Prompt 12: Ekphrasis and Ekphrasis Post). I love looking at different photos and images - they can evoke such a variety of emotions.

That being said, I've had a little trouble with this post... I found some images that really moved me, but they were "all rights reserved." I tried to find a different image (one that I'd be allowed to share/show directly here on my blog), but none of them were doing anything for me.

There are 2 different photos (by the same person, heather ~) that really moved me today. I really hope you'll take a moment to click on the links below to see the images.

Image 1
The first one can be seen here. There's a woman sitting with her head wrapped with her hands and resting on her bent knees. I think it offers a glimpse at the desperation that someone living with a chronic illness feels - the pain, anxiety, depression, isolation, disappointment, etc... There is so much emotional wear and tear that affects those that have chronic illness (and perhaps more-so for those living with invisible illness because others often don't know that you're ill at all). Unless you've experiences chronic pain, you really can't understand the amount of energy and work that it takes to make oneself look "normal" or make things look easy - there are numerous thoughts and choices that are required each moment of the day (including things like weighing whether or not the choice to participate in an activity is worth the increase in physical and emotional pain that will come from your participation).

The woman is sitting in the shadows, but there is light coming from outside. There is always hope, even in the midst of the darkness that chronic illness can bring.

Image 2
The second image is here. This photo shows a woman walking or jogging along the coastline - the waves are crashing on the beach and the wind is blowing. To me, this photo can be viewed several different ways. The way I choose to see it is that this woman is facing an obstacle or fear. She's not retreating from the crashing waves and high winds - she goes forward to face her fears. She appears to be confident in her ability to face what's ahead, and I think that's beautiful. As she moves on the coastline, she stays back from the vast ocean - she is somewhere between being on land and being in the ocean. There is a battle in each of us to decide whether we're going to face our fears or retreat from them.

Black & White
Both of these photos are black and white, which I think make them all the more intense / powerful. Living with chronic pain, depression, and so forth can leave you feeling like all of the color has been sucked out of your life... When you're faced with the limitations, stress, and choices that life with chronic illness brings, it can really make your life feel lifeless. But, the light in black and white photos always seems to be vibrant, offering hope to the subject in the dark shadows. There is always hope, even amidst the darkness.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Wednesday, April 4, 2012

I Write About My Health Because...

There are many reasons why I write about my health, but much of it comes down to... because I can (I feel that it's a gift God has blessed me with). I've always loved journaling. There is so much power in the written word! For the longest time, though, I wouldn't allow others to read my journals... I still have a private journal, where I write things that are more personal (or sometimes too premature for a blog post).

After my car accident in October 2008, I didn't know how to deal with the chronic, debilitating pain; memory, processing, and concentration difficulties; and so forth. I had trouble journaling in any way for a long time - I injured my neck and right shoulder in the accident, so it was physically too painful to write or type much... and then there's the emotional and spiritual pain, of course.

I'm not really sure exactly how I found the online chronic pain / migraine community, but I'm certainly glad I did! The online community has allowed me to cross paths with so many different people, each with their own unique story. I've made some amazing friendships, and found a lot of support that I otherwise wouldn't have had. I feel less alone, knowing that others are fighting similar battles.

I started my own blog, in order to share what I was going through and work out what I was facing. Part of it is the need to simply say the words - to get them out and really face the fact that my life has changed, I am different than I was before the accident - but I still am me!

I find great release in being able to allow the words and feelings to just pass through my fingers onto the keyboard (just as I find release in putting pen to paper). Writing helps me release the powerful hold that chronic illness can have on one's life - the denial of having a chronic illness, having to recognize and respect new limitations, accepting and managing day-to-day reality with chronic pain, and facing the future in a different way.

I would be lying if I said that I wrote solely for myself. I share my story and my experiences in hope that others may find a degree of comfort in knowing that there's another person that is going through something similar. I hope that my words help others to feel less isolated, more validated in what they're going through, inspired and encouraged to keep going... as well as to help educate others about invisible illness and how it can wreak havoc on every aspect of a person's life.

I wrote about this topic during last years Health Activist Writer's Challenge - here.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Tuesday, April 3, 2012

Superpower

Many kids think about how awesome it would be to have a superpower (what it would be / what they'd do with it). As a Migraineur, I often feel like I actually do have superpowers. I have super-senses - I can hear, smell, feel, taste, and see so much more than many others can. However, my hyper-sensitivity doesn't always seem like it's a superpower... it more often feels like a curse. But, on with the challenge for the day...

If I could choose any superpower, I'm not sure exactly which one I could choose... there are three that I think would be really great - to have one or all of.
  • Teleporting - I think it would be amazing to be able to teleport! My husband and I had a long-distance relationship for 6.5 years during college, and we always talked about needing that ability. How liberating it would be for me to not have to worry about driving somewhere, being stranded somewhere because a migraine hit and I couldn't drive back, etc... I wouldn't have to take into consideration the time of day, the weather (the sun is really bad for me), the travel time, and so forth. I could be there more often for my family and friends because it'd be easy to teleport back to my own bed, in just a moment, when/if unbearable pain rears it's ugly head.
  • Increased Energy - It would be great to not have to take so many rest breaks, cut tasks into a lot of mini-tasks, prepare so much for something as "simple" as a trip to the grocery store, etc... Think Energizer bunny - slow and steady, but can keep going and going and going. I wouldn't want an annoying amount of energy, but it would be great to have the energy to be able to do more.
  • Comforting - While being able to comfort others may not be a superhuman power, it's also not something that everyone can or does. I've always tried to keep in mind that we should "be kind, for everyone you meet is fighting a hard battle" (Plato). Kindness and comfort aren't the same, but they are often closely linked.
  • Comfort: to soothe, console, or reassure; bring cheer to; to aid, support, or encourage; console (to make grief or distress seem lighter, by means of kindness and thoughtful attentions); relieve (to lighten, lessen, or remove pain, trouble, discomfort, or hardship); soothe (to pacify or calm)
I've always tried to be a comforting presence for others. I think that the ability to comfort others is a huge gift and blessing. To be able to help lighten another person's load, to help another through a hardship, to help bring a sense of calm to someone's life... what could be better?!
Of course, every superhero has their "kryptonite," and the superpowers I listed are no different.
  • Teleporting - Being able to teleport could easily reduce the already very limited physical activity that I do now... in other words, it could make me weaker and lazy.
  • Increased Energy - Having increased energy can have pretty obvious results... burnout. I already try to do too much, so I know that I'd just raise the baseline of what I have the energy to do... and then I'd try to push beyond that limit - it could easily get out of hand.
  • Comforting - Being a comforter is great, but you have to be able to take care of yourself, too. I feel like I'd spread myself too thin by taking care of everyone but myself (or at least take care of others much more than myself) - I say this because I've done it before.
Ultimately, though, I'm not sure that I'd really want to have a superpower. I don't know that I could deal with all of the added responsibility that I feel comes along with having a superpower. So, instead, I will choose to do my best to use the gifts that God has placed in me. I know that He places obstacles, trials, and adversity in my life, so that He can form / mold me into the person that He made me to be. I don't always understand why things happen the way they do, but I trust that God is in control.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).