Chronic Migraine Warrior

Chronic Migraine Warrior

Sunday, October 31, 2010

A Dream is a Wish Your Heart Makes

"Follow your heart, wherever it leads;
for only your heart know what your soul needs."
            - Jamie Conkle

I wrote the above several years ago. So, when I saw that this month's blog carnival was "A Dream is a Wish Your Heart Makes," it brought it back to mind. I started thinking about dreams and following your heart... what I discovered was surprising.

I used to dream BIG... VERY BIG! I was always the over-achiever, perfectionist, etc... that always reached for the stars (or beyond), and then had the drive to work toward those goals and dreams.

At some point since my pain has become debilitating, I have stopped dreaming BIG... perhaps even stopped dreaming at all. Wow! This discovery really opened by eyes... and made my heart ache. I've mainly been in survival mode for the past 2 years.

After graduating with my Bachelor's degree, I wanted to work for a few years and then return to graduate school. I landed a job that I started a few weeks after graduation. I worked there until my car accident in October 2008. I decided to start graduate school, as I had originally intended, in Fall 2009 - I wasn't going to let the injuries from the accident change my BIG dream of going to graduate school.

I moved to Oklahoma and started classes that August. I had a rough first semester and ended up on academic probation. This was extremely difficult for me to handle. I had the increasing pain and isolation... as well as struggling with school, which was something that I felt was the right step to make toward my dream.

I got married in October 2009 to my best friend, which was a BIG dream come true - he moved up to Oklahoma after he graduated in December. With the help of my new husband, I was able to make it through the Spring semester (got off probation) - he took such good care of me, through some of the roughest times. I was glad to be back in good standing (with the university), but it took everything out of me.

I've been on a leave of absence (LOA) from graduate school since May 2010. Making the decision to take a LOA was difficult for me, but it has been the best decision I could've ever made. The past few months have been the worst months (pain-wise) that I've experienced thus far. There's no way I would've been able to complete the semester.

So, now what?! My life has been juggled around, my relationships have changed, and my dreams have become blurry...

I'm not sure at all. I do want to complete graduate school, though I'm not sure if that will be now or later. I want to live closer to my family (my parents and siblings, husbands parents and sibling, grandparents, etc...). I want to have a family, though this may look different depending on whether or not these migraines truly get under control - I feel confident that they will with the stimulator, but there's always a chance that it won't. I want to be a writer. I want to be play an active role in my life. I want to live out my faith and serve the Lord - I don't know how He wants to use me, but I want to serve and glorify Him.

Perhaps my dreams have simplified. Perhaps they will be BIG again... or maybe they already are... maybe "BIG" has just been re-defined, just as my life has been re-defined... My faith, hope, and dreams are in the hands of my Lord ~ "Trust in the Lord with all of your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight" (Proverbs 3:5-6).

Some DREAM quotes:
  • "Go confidently in the direction of your dreams! Live the life you've imagined." - Henry David Thoreau
  • "If what's in your dreams wasn't already real inside you, you couldn't even dream it." - Gloria Steinem
  • "The greatest thing is to be willing to give up who we are in order to become all that we can become." - Max Depree
  • "If you don't have a dream, how are you going to have a dream come true?" - Faye LaPointe
"Reach high, for stars lie hidden in your soul. Dream deep, for every dream precedes the goal." - P. Vaull Starr

Friday, October 29, 2010

We All Fall Down...

We all fall down ... and then we get right back up again: Blog Carnival.

I have always had a competitive spirit - always seeking a good challenge, with others or just with myself. I was able to live this out so well in my school years - sports (cross-country, track, softball) and school (grades, college admissions, honors) - as well as in the working world. I thirsted for challenges. When I had set-backs (such as, the injuries I endured in sports, or not making the place/time (running) or grades (school) I wanted to), I was able to pick myself and keep trying. I was proud of myself, when I was able to overcome adversity.

When I was suddenly faced with chronic, debilitating illness 2 years ago, I tried for a long time to just pick myself back up and move on. When I wasn't able to pick myself back up, I felt defeated.

It has taken me 2 years to even begin to realize and start to accept that there are times that I can't just "get right back up again." Sometimes I need help from someone else. Being a care-receiver is difficult for me, but it is a lesson that chronic illness has taught (is teaching) me. Sometimes life feels like you are taking one step forward and two steps back, but it is so important to keep getting back up and taking those steps...

Here are a few things to remember:
  1. There are going to be set-backs along the way. You're going to "fall down," but that doesn't mean that you have to stay down and be defeated.
  2. You will likely need to reach out and ask for someone's help, and there is no shame in this.
  3. Pray. God longs for each of us to come closer to and rely on Him.
  4. Once you get back on track, keep putting one foot in front of the other - take life one moment at a time. The moments will add up and you'll start to see a fuller picture.
  5. Never give up hope (and keep praying)!

Thursday, October 28, 2010

Finally, An Update

First, THANK YOU to everyone for all of your prayers and support. I appreciate it more than you know!

I have been in daily pain for a long time... long enough that I don't know what a "pain-free" existence is like. I hurt my hip in 2001... my low back in 2002... have struggled with headaches off and on throughout that time... and now have been having chronic neck pain and debilitating migraines for just over 2 years. As much as I would love to know why, I just wish I knew how God wants me to use these trials and this suffering...

That being said, I feel that the Lord has blessed me with the opportunity to live without constant, debilitating pain. I had a trial procedure done last week, in hopes of ending these horrendous migraines. The procedure was outpatient surgery (10/19). The trial ended Monday (10/25). More information on the procedure can be found at Ascendant Neuro (if you end up contacting Dr. Reed's office, let them know I told you about them).

I wasn't sure whether or not the device was actually working very well, but after having it removed... I think it's safe to say that it was. I wrote this the other day, as I was trying to find some clarity in the situation...

October 23, 2010

Oh! For these moments of life!
I feel blessed to finally have at least some normalcy and true enjoyment back in my life... or at least the hope of such things...
The pain may not completely be gone, but I'm able to act more and more life myself...
Myself... I'm not even too sure what that means right now...
But, I see new hope and light in my family's eyes, when they look at me...
Perhaps God has conveniently placed them around me to use as mirrors to show me what I cannot see on my own...
I'm a bit dazed and lost right now. Everything feels so surreal.
My family and I each trust in the Lord and look to Him to guide us.
Right now, I feel lost... a bit even from God.
While searching for Him, I will look to my family as guideposts leading me back to Him and His path.

Lord, You know my hurts and fears. Please help bring me clarity in knowing Your will for me for this procedure. Thank You for this time with less pain and more family. Amen.

I fell back on my practical, analytic side the following night and sat and wrote a Pros and Cons list. I compiled a list of the ways that the device allowed me to function better, do activities more/longer (without breaks), and even do some things that I couldn't do before. Once I wrote this list, it was much clearer to see that the device had been what had lowered my pain level and allowed me to do these things. Not to mention that by the time Monday (10/25) night rolled around, my head was already starting to hurt... and I woke up with a migraine Tuesday (10/26).

I had this wonderful taste of freedom from the chains of chronic pain. But, I quickly had to gear back up and prepare to battle the beast for several weeks before the possibility of more - I am scheduled to get it permanently implanted on 11/16!

Interestingly, my body has quickly returned to the "migraine mode"... but my mind and soul are resisting as much and as hard as possible. It is such a slippery slope back down to where I was. I have new hope now - a light at the end of the tunnel. I know that I still have a long road/journey ahead of me, but I feel like I'll be better equipped and ready.

Here are a few pictures from my stimulator trial...

Jim, my wonderful dad
Debbie, my amazing mom


Jenn, my best friend & sister

Robin & Jessica, my adorable twin nieces




Beautiful roses, from my loving Grandma


Ginger, my beautiful horse

Monday, October 11, 2010

A Fork in the Road of Life

I find myself at a fork in the road of life. However, even if I knew which way God was calling me to go, it wouldn't seem to matter. I don't feel like I have a choice in which life path I continue on. Let me see if I can work some of this out...

I feel like my life can go in any one of a number of directions; but to simplify my confusion and dilemma, I'll describe it as a for in the road (with two different paths). While life has many crossroads, this one is different... I feel like I don't have much of a choice or say in which path my life will go down - either the treatment works or it doesn't (i.e., either my chronic pain continues to greatly impact my life or it doesn't).

1)  One path is clearer to see than the other. Though there would be numerous opportunities and directions for me to go... I see myself as a wife and mother (and daughter and sister) - actively participating in activities and in each others' lives. I am a writer and work mainly from home, so that I can spend time with my precious family. I am also active with the local church and part of a woman's church group. I am able to live my life with relatively little pain, and feel open to opportunities as they present themselves in my life.

2)  The other path is less clear - it's darker and almost blurry/fuzzy. It's scary to even think about. My role isn't easy to see. How well will I be able to cope with chronic illness? Will I be able to be an active participant in my own life? Will I feel like I'm contributing to my family and my friends in any real way? This path is full of questions and fear, pain and worry, confusion and chaos.

So, I find myself with a wonderful possibility of a life with much less pain, but the treatment may or may not work for me (I will know in a little over a week whether or not it works for me... both exciting and scary). Thus, I find myself in a state of waiting. My faith is slightly shaken, but it is in the Lord. I pray that He gives me the courage and the patience to trust for and wait for His timing.

Saturday, October 9, 2010

Fear in the Life of a Chronic Migraineur

Selena, of Oh My Aches and Pains, is hosting the October 13th edition of the Patients for a Moment blog carnival. This month's topic is about fears: what they are, how you face them, and what you do to overcome them.

Fear is something that I try to ignore - you know, just sweep it under the rug. But, fear in the life of a person with chronic pain builds up quickly, and it cannot stay contained under the rug for long... it must be acknowledged and dealt with.... much easier said than done!

Fear is a constant struggle for those battling any chronic illness. The fear of being unable to complete a task, fear that the pain is going to become  or remain unbearable, fear that medications aren't going to help, etc... These are things that we battle daily, almost continually. Fear runs through all different areas of life - physical, emotional, spiritual, personal, professional, relational, financial, etc...

My fears are numerous and many are unspoken. Most of them are centered on the future... Will the pain ever lessen or cease? Will I ever live a "normal" life? Will I be able to return to and complete graduate school? Will I be able to return to work? Will I be able to have kid(s) - and be the type of mother I want to be? Basically, what kind of future can/will I have with chronic pain?

Fear and depression are both familiar to many people that live with chronic illness. I fear falling into depression... yet again. I fear depression's hold on my life. I fear being thrust into the darkness and the feelings of loneliness that comes with depression. But, fear casts me farther into the depths of depression.

I try to lead as close to a normal life as I can, despite having chronic pain; but it is difficult. My pain can become debilitating and take me out at a moment's notice... for an unknown amount of time. It's difficult to plan or commit to anything ahead of time and I hate having to back out of plans at the last minute.

The irrational (but very real for many living in chronic pain) reality is that there is even fear during the "good" times. When I feel "good" (a relative term), I find myself consciously fighting fearful thoughts that the bad will soon come/return to ruin it.

I honestly wish I had a list of ways to overcome these (and other) fears, but I don't. My advice is this:
  1. Be honest with yourself about what your fears are.
  2. Share your fears with a trusted friend or loved one.
  3. If you feel that you cannot share or handle your fears alone - seek professional help.
  4. Know that you are NOT alone!

Falling Inside the Black

http://jamievalendy.blogspot.com/2010/10/falling-inside-black.html

Wednesday, October 6, 2010

My Hobbies

The theme for the October 2010 edition of the Headache and Migraine Disease Blog Carnival is "How do your hobbies help you cope with your headache disorder?"

I've been mulling this over in my head for weeks now, and I have a mixed response to this question. My hobbies have, in many ways, been affected by my chronic pain. I cannot do many of the things I once loved to do, and the things that I can do often have great limitations. But, the main hobbies that I have found to help me cope with my chronic migraine disorder are:  scrapbooking and writing (and reading).

Scrapbooking. I injured my neck and shoulder, at the same time the migraines became debilitating, so I haven't been able to do as much scrapbooking as I'd like to. For a while after the accident, I just didn't feel up to it (or "in the mood"). I finally got back into it, and did my 2008 scrapbook. I did A LOT the year of my car accident... well, before the accident... I scrapbooked every page of the book, except for the two pages I left about the car accident. They sat empty for months. I didn't even know how to begin or what to say. It felt like a huge release, though, once I was able to finish those pages - I had conquered the fear of those daunting pages about the accident, and I had finished an entire scrapbook! Completing a task or project is something that I definitely try not to take for granted as much anymore.

The things that draw me to scrapbooking are the creativity of designing the pages and arranging the pictures, as well as writing and telling the story (i.e., journaling). I have a very unique experience when I scrapbook. When I look at a photograph, I'm able to go back to that moment in time and relive it. I know it may sound crazy, but I can re-live the moments in a way that involves many of my senses. I don't know how to explain it... I guess this could be a good and a bad thing, as far as coping goes. Staying in/with these photos means that I'm staying in the past and denying the present. It's almost like, if I look at them long enough, maybe I'll be me again (the me before the accident) - I know that that sounds ridiculous and that it can't happen, but it's sometimes a trap that I fall into. It can be good to remember the past, but we must accept the present and move on to our future.

Here are a few pages from my 2008 scrapbook. The first two are of my twin neices (my brother's kids) and my nephew (my brother-in-law's kid). The next one is of my sister, who is one of my closest friends. The third ones are our engagement. And, the last two are my car accident (10/10/08).

© 2010 Jamie Valendy.
© 2010 Jamie Valendy.
© 2010 Jamie Valendy.
© 2010 Jamie Valendy.

Writing (and reading). Due to my injuries, I cannot always write in a journal with a pen (like I would rather do) or write/type as much as I'd like to, and I have difficulty reading as much because of concentration and memory problems that come along with my migraine disorder. But I continue to read and write, as much as I am able to. Reading books, reading blogs and poetry, journaling, writing letters, writing poetry, coming up with book titles and ideas, blogging, etc... it all fascinates me! It's something that I have always had a passion for, and that passion seems heightened (at times) by the roller coaster of emotions that come along with having chronic pain. I write from the heart - making myself vulnerable through the use of words on a page. This has been extremely thereapeutic and cathartic for me. It's a way to acknowledge and release emotions. It's a way to express things that you may not otherwise be able to express. It's a way to grow as a person.

I've always had a wall up around me, only allowing others to see just as much of me as I wanted them to see. There have been very few that I have opened up to and really allowed to see me, and even then... it's usually guarded by only letting them see only one part or side of me. Posting my writing and allowing others to follow my journey with this chronic illness is a GIANT step for me (those who do know me well, know how true this is). I feel a release when I am able to express in words what I am going through. And, it's a feeling I could never explain, when something I've written resonates with someone else and allows them to feel a sense of release because their emotions or experiences have finally been expressed. It truly is a blessing!
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.