Monday, April 20, 2009

Please Take These Easy Steps to Email Your Senators About National Pain Care Policy Act

Step One: Go to the Alliance for Headache Disorders Advocacy website .

Step Two: Click where it says "Click Here" to email your senators. There is a form written letter all in place for you. If you so-desire, there is a place to write a personal note to
your senators to urge them to co-sponsor the National Pain Care Policy Act of 2009. For example, I wrote examples of how chronic pain has affected my life, the lives of those like me and my family.

Step Three: Enter sender (your) information and click send.

Step Four: Ask your family and friends to email their senators too.

This is extremely easy to do and only takes a few minutes. Your senators are automatically found when you enter your current address. Let's get together and let our senators know we need this passed and quickly!

Any questions, go to the AHDA website.

Tuesday, April 14, 2009

April Edition of The Headache & Migraine Disease Blog Carnival Is Posted!

The April Edition of The Headache & Migraine Disease Blog Carnival is up at Somebody Heal Me by Diana Lee.

This month, submissions were gathered from blogger's favorite articles. Please check out these articles HERE.

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on the theme of What Keeps You Going When You're Suffering.

Friday, April 10, 2009

Surprised by Support

When my severe debilitating headache began in October 2005, the neurologist at the hospital where I was admitted was unsure of the cause. Many people gathered in support. My mom was my "Marmee," flying in from out of town, immediately knowing how to get me to eat when I had stopped eating and drinking. My fiance was keeping our friends updated and was at my side whenever possible. Co-workers sent me cards. My supervisor showed up at my bedside. My friend who had just given birth called me and I could hear her days old baby boy gurgling on her chest. Several of my friends came to visit me and held my hand. My aunt took care of my dog. I had so much support and encouragement.

The days became weeks, the weeks became months, the months became years. Diagnosis. Treatment. Educated trial and error with many medications. Life outside my little bubble continued, even without my active presence. When the initial wave of support subsided, I have to honestly say I was not prepared for the quiet that followed. I knew people had their lives to live. However, in the face of dealing with an illness and pain that became chronic and domineering, I was surprised that the support would not continue in the same way that it had started out.

In the first several months of my Migraine disease and New Daily Persistent Headache, I read a passage in the book, Walking With God on the Road You Never Wanted to Travel by Mark Atteberry. It reads:
Here we can draw a lesson from the redwood forests of California. Those giant trees can be as tall as three hundred feet and fifty feet in diameter. You'd think the roots of such behemoths would reach deep into the earth, but they don't. Considering their height, redwoods actually have very shallow root systems. What, then, is the secret of their survival? How do they keep from toppling over when assailed by howling winds? Simple. Their roots, though shallow are entangled with one another's. They are, in essence, locking arms and helping one another withstand nature's attacks.
This was my idea of how my friends and family had been in the beginning. I had not toppled over in the winds of this disease because I had so much support and encouragement. Therefore, when I found myself very alone in my pain and suffering, I was longing for their presence again.

Chronic illness breeds loneliness. It comes along with the territory. I went through several waves of disappointment and sadness about the loneliness. I knew God was with me. But, I felt at a loss in understanding why I felt so alone. In dealing with my disappointment with others, I found that I had to readjust my expectations of them. I had expected everyone to be a "redwood" that was always strong and always there and always supportive. But the truth is that people cannot always be there.

In reading Henri Nouwen's Bread for the Journey, I found something that he wrote that really spoke to me. "We need to forgive one another for not being God." Even though I may want and need people to be supportive as I walk through this chronic illness, I cannot expect them to be there every time I need them. And I also need to give them grace and understanding when they are not able to be what I want. Of course no one is perfect. But, it is not about being perfect or not. It is about realizing that we all have limitations. We all have our own suffering, whether it be physical or emotional or financial or spiritual. Realizing, then understanding and then accepting others' limitations and just plain humanness is what I needed.

God is always with me. He is present in my suffering, which brings up a lot of difficult questions. Despite all my questions, I know for sure that God loves me and that He is walking this road with me no matter what.

Time, prayer and angst have brought me to the realization that the redwoods spoken about in Mark Atteberry's book aren't necessarily a set group of people. They change and transform constantly. And that is okay.

It takes a village to support a person with chronic illness. A phone conversation with my dad. My mom sitting quietly at my hospital bedside. A shout-out from my brother and sister-in-law. Facebook posts from long-lost friends. My mother and father-in-law spending weeks doing household chores, cooking and running errands.
MyMigraineConnection buddies who lift me up and encourage me and let me know I can do it. Rotating friends coming to sit and be with me in my pain. An old co-worker who cooked me meals and took me out of the house to get a massage. A friend with Migraines who calls me. Friends who pick up prescriptions for me. Cards and packages from an out-of-state friend. My dad's cousin sending me a note. Old friends with listening ears who send encouragement. A fellow Migraineur who knitted and sent me a heart that I can hold in my hands and remember I am not alone. My husband's steady and unwavering support, love, grace, and presence.

For a long time, I thought I was alone only to be recently surprised to see the redwood forest that was always there. This is not to say that chronic illness is not lonely. It is. There is a lot of time spent in the quiet of my bedroom. However, in adjusting my expectations of people and realizing that support is a revolving door, my eyes have been opened to the surprise that the reason I am still going is because many people are in my life and that God anchors us all together.

Friday, April 3, 2009

Letters to Myself

I have started writing letters to myself.

These letters are from the self who has seen some recent improvement in her Migraines/New Daily Persistent Headache to the self who is scared and despairing because she is so ill. Writing letters to myself helps me emotionally in the middle of the rough spots when can only see the storm clouds around me and cannot see the clear skies that follow.

Who better to encourage me, than me? I know exactly what I am going through. I know what's going on in my heart. I know what I need to hear. Encouragement and support from others are also keys in getting through those tough times. However, it is inevitable that I will be alone in my illness at one point or another, even if people are around. Sometimes it can feel like no one understands. But, I do. So, I can speak resounding words of truth and hope. These letters remind the self who is without hope that she can and will endure. The following is one of the letters I have written:

"Kelly,
You may be terrified and ridden with despair. You may be unable to fathom how you can get through this and to the other side. Let me reassure you - you will. Open your heart to God. Listen. He loves you more than any other. He can be trusted. He will get you through, even if you don't believe or can't see it. Pain is skewing your perspective. But, your pain does not have the last word. God does. Let him in. Seek him. He is there ready to hold you and bring you his shalom - peace. Love, Kelly"

What do you to mentally/emotionally get through the rough spots of your illness(es)?