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).

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).

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 

http://youtu.be/JKZM7Kc0IPE

These Things Take Time by Sanctus Real

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

http://youtu.be/qFT4ScXaSzs

Glass by Ross Copperman

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

http://youtu.be/IFu8AYgRsog

Skyscraper by Demi Lovato

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...

http://youtu.be/r_8ydghbGSg

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

http://youtu.be/Af8mB9ABuJA

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

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:

• The American Headache SocietyACHE (The American Headache Society Committee for Headache Education)
• Clusterbusters
• MAGNUM (The National Migraine Foundation)
• The Migraine Research Foundation
• The National Headache Foundation
• O.U.C.H. (Organization for Understanding Cluster Headaches)
• The PFO Research Foundation

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).

Keep Calm & Stay Strong

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

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.