June Edition of the Headache and Migraine Disease Blog Carnival Posted

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

This month, submissions are on the topic: "Misunderstanding Migraine". There are a good amount of submissions this month! Check them out.

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 Misunderstanding Migraine.

May Edition of the Christians with Chronic Illness Blog Carnival Posted

The May edition of the Christians with Chronic Illness blog carnival is now posted at this link.

This month's edition is on the topic of what we, people with chronic illness, miss or have lost as a result of the chronic illness and how we have adjusted or accepted what we miss or have lost. There are many articles on varied topics. Check out the carnival and see what words of comfort and encouragement are there.

May Edition of The Headache & Migraine Disease Blog Carnival Posted

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

This month, submissions are on the topic: "Talk about where to find support: Where do you find it & where can other migraineurs find it?". I found it enlightening to read the different avenues people find support. Megan Otlman at Free My Brain From Migraine Pain presents a comprehensive list of different types of support. Diana Lee at Somebody Heal Me shared a helpful list of internet Migraine Forums where Migraineurs can find support from other people with chronic illness. These are just two of several useful articles that were submitted this month.

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 "Talk about where to find support: Where do you find it & where can other migraineurs find it?"

A Do-er Who Lost Her Sense of Self Worth and Then Found It Again

I am a "do-er". Any "do-er"s in the house? I feel a great sense of accomplishment and satisfaction when I have done something, whether it be doing the laundry, emptying the dishwasher, cooking a meal, grocery shopping, etc. I am one of those odd people who actually like to clean. And when I worked, I simply loved doing my job. (Perhaps I'm forgetting the stressful parts.)

And if I happen to do any of those things well? Well, then, I am even more satisfied. Old habits die hard and the perfectionist in me still creeps up now and again.

Before Migraine disease and New Daily Persistent Headache came into the picture, my life was happily progressing: Do. Do. Do. Do. Do. My beloved checklists were fulfilled. Check. Check. Check. Check. Check.

Enter stage right Migraines and New Daily Persistent Headache.

Silence. No more doing. Just being.

Okay, well let me clarify, a silence of doing entered my life, but I was not silent. I was very vocal about what I thought of this new life of quiet and I was not happy about it. My job was silenced; my volunteer opportunities were silenced; many friendships were silenced (or turned down to just above a mute).

When one of my Migraines are in progress, I cannot tolerate light or sound or smell or movement or touch. Therefore, with my "black out" curtains drawn and people banished from my presence, I find myself curled in a ball in my cave alone. Migraine pins me to my bed with fatigue and dizziness. My thought processes are often disrupted. Finding the words I want to say can be very difficult. Nausea keeps the constant feeling of vomiting close at hand. And if my Migraine is accompanied by a headache...the pain is blinding.

No light. No noise. No people. No ability to do.

However, my thoughts were certainly working overtime. In the time between the shows I watched on television for distraction, I weaved a dangerous web in my mind. Because I was not able to do, even the simplest of things, I felt I had no worth. I felt like a burden to my husband. He was not only working at his job and doing all of the household tasks that I could not do, but he was also taking care of me, comforting me, and spending hard earned cash on me. My thoughts spiraled in a devastating direction. I felt worthless. And no convincing from my husband or anyone else could change how I felt. I felt, in the depths of my heart, I was worth more dead than alive.

That is until my counselor came for a home-visit. "You are Loved," she said. "You are loved just as you are...not doing stuff, not taking care of household chores, not volunteering, not working. You, very simply, are Loved."

Hmm. She did not try to convince me of anything. She just told me what she believed. But, I was not sure how being "Loved" meant that I was any less of a burden or had any more worth. I wanted to do some of my own investigation. So, I picked up a book with "loved" in the title: Life of the Beloved by Henri Nouwen. It is a book he wrote to a non-Christian friend about spiritual living. His words were like a balm for my soul. I drank in every word. It is a short book, about 150 pages. But, there is so much information jam packed into it, it took me a while to navigate through.

It was as if I kept refusing to hear the voice that speaks from the very depth of my being and says: "You are my Beloved, on you my favor rests." That voice has always been there, but it seems that I was much more eager to listen to the other, louder voices saying: "Prove that you are worth something; do something relevant, spectacular, or powerful and then you will earn the love you so desire." pg 34

I grew up in a household where my parents, lovingly, praised my actions. And I connected the two in my mind: doing stuff well = love. But, I couldn't do stuff well in the midst of my illness. As I mentioned before, there have been times where I plain could not do anything, much less do it well!

"Failure! Failure! Failure!" My insides scream. "Worthless failure!"

Through reading Henri Nouwen's book, God brought me back to seeing the truth about myself and the truth about how He sees me. He sees me with Love. That is the part and the whole. Everything.

We are the Beloved. We are intimately loved long before our parents, teachers, spouses, children and friends loved or wounded us. That's the truth of our lives. That's the truth I want you to claim for yourself. That's the truth spoken by the voice that says, "You are the Beloved." pg 36

Knowing that God loves me just how I am is infinitely comforting. Knowing that who I am is enough. I don't have to do anything. He loves me for me. And with my abilities and my inabilities, God is present and sees me as valuable and worthy and beautiful.

Pre-Migraine disease and NDPH, I worked as a speech language pathologist with children with disabilities, sometimes severe/profound. I cherished my time with them. Some of the could not speak, could not walk, could not eat without assistance, could not dress themselves. But, I never questioned their worth. In fact, I thought they were worth devoting my life's work to. The author of Life of the Beloved, Henri Nouwen, lived in a community for those with special needs and he brought this to my attention when speaking of a member of his community that was totally dependent on others to take care of him. Sometimes, I am as dependent as children who I loved to work with. And I am just as Loved. I am just as worthy.

Seeing myself through God's eyes has been a gift. Although I still struggle with the days where all I can do is lay in my cave. I have desires to go and to do and to be. But, I can rest in knowing no matter what, I am Loved. And, need I say, so are you.

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.

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.

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.