Saturday, October 17, 2009

Hope Side By Side With Suffering Part 3

I start to lose grip of my certain hope in God when I experience the bitterness of my suffering. This bitterness has rocked my faith.  I have so many unanswered questions about God.  Is He really good if He allows so much pain and anguish? How can he stand back and watch my misery unfold and yet not do something about it?  
My world of understanding of who God is and how He works has been turned upside down and inside out. I still attempt to cling to my certain hope that is my faith in God (that He is present with me and loves me). Some days my faith is so small it is hard to find. The questions out number the answers. Anger, depression and anxiety consume me.  I do not understand! I am confused! I do not know how to navigate nor do I want to navigate a life that involves much more excruciating pain than I ever expected to face.
In the book of the Bible, Lamentations, after five chapters of declaring the suffering that has taken place, the author, Jeremiah, does not conclude with a message that everything will be okay. In fact, the last verses in the book, Lamentations 5:21-22 say, "Bring us back to you, Lord, and we will return. Make our days as they were before, or have you completely rejected us? Are you so angry with us?"

*Silence.* Is this really the end of the book? Does anyone else read this conclusion and wonder where the voice of comfort from God that will bring peace is? How intriguing that this book of lament ends with questions for God that are left unanswered. In fact, where is God's voice at all?
Going back to what I discussed in Part 2 of this series, the book of Lamentations has three voices, the narrator, the city of Jerusalem personified as a woman and the man who is a witness to the suffering. Where is God's voice in all of this? What does it mean to me, the reader, that God is silent during and at the end of this book of lament? Moreover, what does it me to me, a person who suffers, that God is silent?

My walk with God often is challenged as I cry out, beg for mercy, ask for relief and in turn hear nothing in response. No rescue. No peace. This walk with suffering can be and often is a lonely road where I simply do not see God's presence. Just as in the book of Lamentations, God is silent. This silence challenges my certain hope (that God loves me and is present).  
The words to the song, "The Silence of God" by Andrew Peterson, has touched a deep place in my soul. (Click on this link to hear the song on YouTube.) It is poetry that has come along side me, validated and expressed the spirit of how I have felt. It is a song of lament but also yet a song of certain hope. In these lyrics, though there is dissonance between the emotions of loneliness, doubt, anger, fear, anxiety, confusion and certain hope, there is also resolution. The resolution, where hope sits side by side with suffering, is found in the following lyrics of Andrew Peterson's song:
And the man of all sorrows, He never forgot what sorrow is carried by the hearts that he bought. So when the questions dissolve into the silence of God, the aching may remain but the breaking does not.  The aching remains, the breaking does not in the holy lonesome echo of the silence of God.

Friday, October 16, 2009

October Edition of Headache & Migraine Disease Blog Carnival

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

This month, submissions are on the topic: Alternative Therapies
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 Alternative Therapies .

Questions about Faith and Spirituality on My Migraine Connection

I just read a sharepost by Teri Robert called Migraine and Headaches - Questions About Faith and Spirituality. If you have questions about faith and healing, Teri Robert will be submitting your question(s) to "experienced faith and healing bloggers". The answers will be shared in an upcoming post. I will let you know when to look for it.

Wednesday, October 7, 2009

Hope Side By Side With Suffering Part 2

What got my brain churning around the idea of hope amidst suffering are podcasts I have listened to of the messages that Mars Hill Bible Church did on the book of Lamentations in March of this year. These teachings, especially one by Rob Bell on chapter three called New Skirts, have expanded my perspective on the friction I have experienced between suffering and hope. I am going to share some of what I learned in listening to that teaching.

Lamentations is a book of the Old Testament in the Bible where the author, Jeremiah, describes the destruction, the grief and the horrors that have taken place in the fall of Jerusalem. There are three "voices" in this five chapter book.  A narrator describes the state of distress of the city. The city, personified as a woman, speaks of her suffering. And in chapter three, a man, who witnessed the suffering, speaks of the devastation and pain.

In Lamentations 3:15-18, the man says,

The Lord filled me with misery; he made me drunk with suffering. He broke my teeth with gravel and trampled me into the dirt. I have no more peace. I have forgotten what happiness is. I said, "My strength is gone, and I have no hope in the Lord." 
Perhaps I have not eaten gravel or been trampled in the dirt. But, I go through seasons of my chronic illness where the pain and suffering I deal with every day is misery. I am empty and find myself weak, weary and without hope. Where is God? Why is he allowing such pain in my life?

Within a few verses of saying he is without hope, the man who has witnessed and experienced horrific suffering declares in Lamentations 3:20-24,
I well remember them [the experiences with suffering], and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." 
Misery and yet hope. As I discussed in Part 1 of this series, I believe that these verses describe a hope of certainty. In his message, Rob Bell suggests that many people may believe that hope can not coexist with the presence of emotions of suffering. I had struggled with this notion of hope in the suffering of my chronic illness. When day after day after day after day is filled with pain, frustration, sadness or anxiety, it is hard to even consider hope. I believe that people (maybe religious folks in particular) expect that when someone goes through a struggle that they should not experience those aforementioned emotions because there is a certain hope (in God).  But actually, suffering sits with hope. Doubt sits with hope. Fear sits with hope. Confusion sits with hope.

According to Bell,

For many people, I guess (they believe:) "I don't measure up because my hope is laced with all sorts of other things."
Shouldn't it be that if I have a certain hope then I should not have doubt or fear or confusion? If my certain hope is the love of God, if my certain hope is the presence of God, then why do I have all of those other emotions?   According to Lamentations, hope is side by side with all these things. And that is just how it is. If I am doubting God, or afraid because I do not feel His presence or am confused because my life and pain just do not make sense, it does not make me a "weak" or bad person. It makes me real. Hope and suffering go together. In the midst of doubt and fear and frustration and anger and confusion, certain hope (the love of God, the presence of God), is always there. 

Keep a look out for the final part of this series on hope side by side with suffering.

Monday, October 5, 2009

Hope Side by Side With Suffering Part 1

Lamentations.  Grief, sorrow and cries for mercy have been flowing from my lips and dropping from my eyes with great frequency of late. In the process of lamenting over my suffering, the notion of having hope amidst the grief has produced some friction within me. How can great sorrow and great hope coexist? How can I bellow about the state of my life and about the pain that refuses to relent, yet have hope? 
In this three part series, I journey to understand hope together with suffering.

When I think of what I am hoping for in regards to my health, the short list of what comes to mind are the following: 
*that I find a the preventative(s) and dose(s) that will make a difference toward better Migraine and NDPH management.
*that I will not have a Migraine on important days like holidays, appointments, family get-togethers, or dates with a friend.
*that today will be a day where I can get out of bed, get off the couch and go grocery shopping, do housework, and become somewhat of  "normal" person.

But, these things I hope for do not create firm ground beneath my feet. Each of the aforementioned cases are cases of circumstantial hope where hope is dependent on something else to happen. When another medication trial is a bust, I can lose hope. When my abortive and rescue medications fail to bring relief, I can lose hope.  When I spend two weeks in a hospital only for the doctor to say, "we have to discharge you because there is nothing more we can do right now", hope is like a seed in my hand that is so tiny it can slip through my fingers and fall to the ground and sometimes it does.

Circumstantial hope rises and falls based on my state of being. This is not to say that circumstantial hope is bad. In fact, it is necessary in keeping me sane and gives me the motivation to put one foot in front of the other. The hope for a better preventative regimen, for abortive and rescue medications that I can count on, and for IV intervention that brings relief are all vital in my forward movement in the management of my health.

Hebrews 11:1 says,
Faith is being sure of what we hope for and certain of what we do not see.
In reading this verse, I would venture to surmise that faith and hope are akin to each other. The kind of hope spoken of in Hebrews 11:1 is not circumstantial. It is certainty. The verse almost begs the question, what is it that I am certain about? And in the answer is where hope dwells. This certain hope is a firm foundation where I can go when all other hope fails.

In Part Two, I'll be exploring how suffering can coexist with certain hope.

Sunday, September 27, 2009

Important New Blog from the Alliance for Headache Disorders Advocacy

According to the their website, the Alliance for Headache Disorders Advocacy 
is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients.
The AHDA has started a new blog called HeadNotes. This blog will provide another way to find what is happening with headache advocacy. Their latest post is a must-read as it is an update on what progress has been made since the formation of the group in September 2007. I was excited to read about how the AHDA has been making a difference.

It is of vital importance for those of us who are headache sufferers to be involved in the advocacy for better treatment and research. As others have said before me, if we do not stand up for ourselves, how can we expect others to do so?

The AHDA website has a page dedicated to what we can be doing all the time for headache advocacy. Addiionally, there is an Action Center as well as an action e-list where for you and other headache sufferers can sign up to receive alerts on important advocacy information. I encourage you to please sign up for action alerts and get involved! The HeadNotes blog is a great place to get started.

Saturday, September 26, 2009

30 Things About My Invisible Illness You May Not Know

I completely missed the boat this year in blogging about Invisible Chronic Illness Awareness Week that took place September 14-20th. Here is my belated meme:
1. The illness I live with is: Migraine Disease & New Daily Persisitent Headache (I have others, but will not be referring to them in this meme.)

2. I was diagnosed with it in the year: 2006 (February) when I was 26.

3. But I had symptoms since: I have had headaches since I was in jr. high/high school. I was diagnosed with chronic sinus headaches as a teenager that continued into adulthood, but I now believe that many were probably Migraines. NDPH and Migraines became disabling in October 2005 when I was 25.

4. The biggest adjustment I've had to make is: make a complete lifestyle change and adapt to new limitations. I used to be a planner, now I go with the flow.

5. Most people assume: Migraines are just headaches. Also they assume if I look okay, I am not in pain.

6. The hardest part about mornings is: wondering what I will be able to do today or if I will have to spend most of the day in bed.

7. My favorite medical TV show is: none of them. I don't watch any.

8. A gadget I couldn't live without is: my computer.

9. The hardest part about nights are: difficulty falling asleep/staying asleep because of pain.

10. Each day I take 19 pills & vitamins. More depending on daily pain level. (No comments, please.)

11. Regarding alternative treatments I: do biofeedback, relaxation techniques, pilates, exercise, modified diet, and the list goes on.

12. If I had to choose between an invisible illness or visible I would chose: neither. 

13. Regarding working and career: I haven't worked since February 8, 2006. Although I keep up on continuing education for my speech language pathology certification. I volunteer when I am able.

14. People would be surprised to know: that I am in pain 24/7 and even when I look like I'm not, I am just pushing through.

15. The hardest thing to accept about my new reality has been: that I am so dependent on others.

16. Something I never thought I could do with my illness that I did was: make a difference.

17. The commercials about my illness: are inadequate and sometimes make me angry.

18. Somethings I really miss doing since I was diagnosed are: working as an SLP and spending time with family/friends whenever I wanted.

19. It was really hard to have to give up: serving others in the way I used to.

20. A new hobby I have taken up since my diagnosis is: knitting.

21. If I could have one day of feeling normal again I would: serve in some way that I'm not able to now: i.e. work with kids, meet the physical needs of someone who is chronically ill ect...

22. My illness has taught me: how to persevere.

23. What to know a secret? One thing people say that gets under my skin is: God has a reason for my illness.

24. But I love it when people: are compassionate and ask me questions about my illness.

25. My favorite motto, scripture, quote that gets me through tough times is: "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 40:31

26. When someone is diagnosed I'd like to tell them: Educate yourself. Be an active part of your health care team. See a headache/Migraine specialist.

27. Something that has surprised me about living with an illness is: that it takes patience and time to find a treatment regimen that will work and furthermore that there is no cure for Migraine disease yet.

28. The nicest thing someone did for me when I wasn't feeling well was: to sit in silence for hours at my bedside just 'being' with me. A close second is having someone carry me to and hold me up on the toilet.

29. I'm involved with Invisible Illness Week because: awareness and education are important to me.

30. The fact that you read this list makes me feel: loved.
Even though National Invisible Chronic Illness Awareness Week took place mid September, you can read more about it and the 5-day free virutal conference (which can be downloaded for free on iTunes) on its website.

Wednesday, September 23, 2009

Action Alert: FDA Ban on Prescription Pain Meds

The American Pain Foundation believes that the concerns expressed by the FDA about the associated risks of certain prescription pain medications can be addressed better with education than regulation. At Somebody Heal Me, Diana Lee's recent blog post, FDA Ban on Prescription Pain Meds: Please Take Action Now gives excellent reasons as to why there is concern about the FDA's proposed ban and why education would be a better route. It is imperitive you read her fantastic post and if you agree, sign the petition, Acetaminophen: Educate, Do Not Regulate before Sunday, September 27th.

A Migraineur Interviews Cindy McCain

Teri Robert, our beloved Migraine Advocate, interviewed Cindy McCain who just recently gave the keynote address at the International Headache Congress. Mrs. McCain revealed a couple of weeks ago that she has secretly been struggling with Migraines for 15 years to print and television media such as People Magazine and Matt Lauer on The Today Show. However, being a Migraineuer, Teri Robert had a different and very relevant angle to the story. To find out what Mrs. McCain would say to those of us who suffer with Migraine, check out Interview with Cincy McCain: Migraine Sufferer, Advocate.

Thursday, September 10, 2009

Summer Hiatus?

So, did I mention I was going to take a summer hiatus from blogging? No? Well, I'm back!

This summer has been a time of improvement and set-backs health-wise (Migraines/Asthma/stomach issues). But, overall, I am very encouraged. If my Migraine brain memory will allow me to, I'll attempt to summarize.

In June and July I had marked improvement and very low pain levels. My NDPH (New Daily Persistent Headache) was much more manageable with lower pain levels. My Migraine improvement was phenomenal. For about ten weeks from May to July, I had only three Migraines outside of my typical menstrual Migraines (which typically last 7-9 days)! Happy dances all around! I was able to start volunteering again. It was fantastic to start doing more normal things like cleaning and going to the grocery store and cooking meals for my husband. We were able to take a trip to Outer Banks, North Carolina. And we even decided to get another dog--an 18 month old rescue.

I felt as though I'd found my miracle combination of preventatives and exercising and biofeedback and diet and balancing activity with rest.

And then at the end of July, my head decided to go on a 37 day Migraine streak. Yep, you read that right 37 days! So, what went wrong?

According to my specialist it was a perfect storm of stackable triggers. It took more than one to take me down, which is the good news. But, as Dr. N (my beloved Migraine/headache specialist) said, when I fall, I fall hard. It was a perfect storm and my Migraine became intractable/resistant to treatment. Lucky me.

I was hospitalized for two weeks downtown Chicago at Diamond's Inpatient Headache Unit. In the last 10 months, over three different stays, I've spent a month in the hospital. Deep breath in. Deep breath out.

My Migraine did not break until 7 days after I was discharged. So frustrating. What is wrong with my brain? Since the Migraine broke, I have had good days and bad days. I have a Migraine about every other day and my NDPH pain has been up and down. I'm still spending a lot of time in bed, but I'm also getting out to walk and swim, which Dr. N will be happy about. I see Dr. N at the end of the month and will be glad to converse more with him and see what else we can do.

When I was in the hospital, I remembered the low pain time I had when we were on our vacation in North Carolina. I remembered the freedom of flying in a hang glider 2000ft above the ground. I remembered watching the dolphins swim through the ocean as the sun came up. I remembered walking on the beach through the waves as the sun set on the other side of the island. I remembered that I will get through this bad cycle. I remembered there will be better days. I remembered not to lose hope.

There is always hope.

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; tehy will walk and not be faint. Isaiah 40:31

Thursday, June 11, 2009

June Edition of the Headache and Migraine Disease Blog Carnival Posted

The June 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.

Saturday, May 16, 2009

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?"

Tuesday, May 5, 2009

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.

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.

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:

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)?

Wednesday, March 25, 2009

Faith-Based Books for Facing Chronic Ilness

Over the past few years, I have come across a few faith-based books that have helped me tremendously in my journey through chronic illness.

Here are a list of a few of them. The first three specifically address facing chronic illness and/or physical pain. The last two address suffering in a broader sense.

-The Gift of Pain: Why We Hurt & What We Can Do About It by Dr. Paul Brand
-Facing Pain, Finding Hope: A Physician Examines Pain, Faith, and The Healing Stories of Jesus by Dr. Daniel Hurley
-When We Hurt: Prayer, Preparation & Hope For Life's Pain by Phillip Yancey

-Walking with God on the Road You Never Wanted to Travel by Mark Atteberry
-The One Year Book of Hope by Nancy Guthrie

Do you have any faith-based books that you would recommend that have helped you live with chronic illness?

Tuesday, March 24, 2009

March 2009 Update on Cervical Facet Blocks, Nerve Blocks and Botox

***Please note, I have put together an updated overview of my cervical facet block experience. You can see that post HERE.*** 

In March of 2008, I began to have back of the head and neck pain. I was referred to a specialist to address these issues. I wrote about my history with back of the head/neck pain and my first experience with neck injections in Cervical Facet Blocks: Undercover Investigative Report. In Update: Cervical Facet Blocks, I discussed what it was like five weeks post-procedure.

Between my initial injections and m
y second round of injections, I went to physical therapy twice a week. However, my back of the head/neck muscles were so tight that I did not see any significant improvement during that time.

Round two was on December 3, 2008. I received bilateral cervical facet blocks at the first joint in my spine called occipito-atlanto joint which connects the base of the skull to the spine, between C1 and C2 (first and second vertebrae of the spine) and between C2 and C3 (second and third vertebrae of the spine). These injections were at the same locations as the ones I had in September 2008. In addition, I received bilateral C2 root ganglion blocks and bilateral suboccipital peripheral nerve peripheral blocks.

This image from, points out the location of the subocciptial nerve. I really appreciate it because it shows just how many muscles are surrounding these nerves. No wonder physical therapy and/or massage aggravates my neck pain.

Recovery was more difficult from the
December 2008 blocks. Emotionally, I was still struggling to regain my footing after the October 2008 hospitalization and was still having significant NDPH pain and frequent, if not daily Migraines. For nine days post-procedure, I felt as though someone had taken a two by four to the back of my head. The pain I was experiencing everywhere and the symptoms of Migraine about drove me to my breaking point. I vowed I would never have the procedure again.

However, in the coming weeks, my neck started feeling better than it had ever been before. I felt complete numbness in my neck muscles. My physical therapist was able to be more aggressive with my ther
apy and I felt no pain. An additional surprise was that my Migraines went away almost completely until January 6, 2009. Additionally, my NDPH also decreased to a pain level of 1-2 out of 10. A phenomenal change! We were not sure if it was directly related to the blocks or to the recent preventative medication increase, but I was satisfied with so much improvement.

Unfortunately, my menstrual Migraines in the beginning of January 2009 brought the return of my neck pain. During my hospitalization in late January to early February 2009, my neck physiatrist visited me. We discussed that although it is wonderful to have had some relief from the blocks for a few weeks, it is also unfortunate that the pain relief did not last through my menstrual cycle. So, we decided to try some other injection sites as an investigative tool to discover what might work and hopefully last somewhat longer.

On January 29, 2009, I received bilateral C2 root ganglion blocks, bilateral subocciptial peripheral nerve blocks, and bilateral Botox injections in my neck and upper back muscles including trapezius, levator, splenius and paraspinals. Because I was in the hospital, I was able to receive pain injections that facilitated my ability to handle the pain that I felt as a result of the injections. I had expressed concern to both specialists about my ability to emotionally handle more pain from the injections. They both felt that being hospitalized (as opposed to receiving the injections in outpatient one-day surgery) would be the best place for me. And it was.

One story I would like to share about this procedure, is that I woke up in the middle of it. I was under anesthesia, not heavy anesthesia, but sedated enough to not usually remember much or feel anything. I woke up and heard my physiatrist talking with another man. But, I also felt the injections that I believe were the Botox and they hurt! I finally realized I was not falling back asleep, so I said "I am awake." They were silent, and I fell back asleep. I imagine that happens time to time. Initially, my fear had always been that this situation would happen. But, it was not scary at all and actually calmed me that it happened and was not traumatic.

Although the injections initially cause me a lot of pain for many days, according to my physiatrist, this is not necessarily common across the board. Some people are more sensitive than others.

The injections I got in January 2009 were not quick to take, however I did receive eventual neck pain relief from them that lasted through my next menstrual Migraine cycle.
Today, after weeks of decreased neck pain, it is on the rise again. My next menstural cycle should be soon, so it may be related or it may be the massage I just got that was a bit too much for me. I see my physiatrist mid-April in hopes that we can discuss more about next steps.

Friday, March 20, 2009

Been a While

Dear readers, it has been a while since I have been able to post, but I am glad to be back again!

I was hospitalized yet again from January 27th to February 4th for Migraines. I also had another set of cervical-spine injections as well as Botox injections in my neck/shoulder area. I have so much to share. It has been quite a long couple of months of being in bed and surviving pain. However, I think we may be onto something now. My Migraines are relenting and I'm starting to crawl out of my cave and stretch and appreciate the sunshine as opposed to run from it.

Look for more from me soon!

Wednesday, January 21, 2009

Do Ever Have One of Those Days?

Do you ever have one of those days where you look around and you cannot believe this is your life?

I am having one of those days...

I am *so* thankful for many things in my life, my husband, my house, my sense of security, my loving family, my forum buddies, my dog...

But, I am *so* angry and *so* frustrated and *so* deeply saddened to my c
ore about how Migraine disease and New Daily Persistent Headache and neck pain and Fibromyalgia are affecting my life right now.

It is just one of those days.

Monday, January 12, 2009

Coping With Suffering: January 2009 Headache & Migraine Disease Blog Carnival Posted

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

Please check out this month's topic of "What Keeps You Going When You are Suffering."

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.

Saturday, January 10, 2009

Fly With Hope

In the months between my second hospitalization for Migraine in February 2006 and my wedding in July 2006, I changed email providers and had to choose a new email prefix. Big decision, I know. ;) It used to be "HopeinGod". But that prefix was already taken with my new email provider and I had to choose something different.

I probably should have been putting my energy into planning the wedding, but stopping and thinking about my new email "prefix" became important. I thought about who I was at that moment and what I most wanted. I wanted to fly. I wanted to soar. Flying meant freedom. Freedom from anything that was holding me back. Freedom from pain and nausea and dizziness and side effects of medication. Freedom from anxiety and panic attacks. Freedom from disappointment. Freedom from failure. Freedom to go, to do, to be. No limitations. No boundaries.

The daily unrelenting pain that had begun in October 2005 was still fresh and new to me. I had never known pain like this before. Instead of going about my life with enjoyment, I was in a whole new world of figuring out how just to make it through the day. I had a new set of limitations. I was not working and although somehow the wedding planning was getting done, I could not imagine being able to walk down the aisle to marry the nerd :) of my dreams. My fight was day to day, moment to moment to keep getting through the symptoms that go along with Migraine and to keep holding on to the hope that tomorrow would be a better day.

What got me through the hospitalizations? What gets me through all of the long hours and minutes and days of excruciating pain, and through facing situations that I am not strong enough to endure? What gives me motivation? What gives me encouragement? What tells me that when it looks like all is lost, it really isn't? What gets me through suffering when it is down to me alone without a computer, without my husband, without my friends or family or forum buddies? What gets me through when it is me versus the darkness?

My faith. It is a faith that I have questioned. It is a faith that I have struggled through. It is a faith that has challenged me. It is a faith that I have almost given up on. It has been a faith that has brought me to my knees in tears and to hoarseness in anger. It is a faith that I sometimes do not understand. It is a faith I have wrestled with.

My faith in God, in Jesus, tells me there is hope. I have sat alone on the floor of my kitchen screaming through tears at God. Where are You? Why have You left me like this? Why don't You heal me? Why do You let me suffer?

According to Hebrews 11:1 in the bible, "Faith is being sure of what you hope for and certain of what you cannot see." It is a definition of faith that pushes the boundaries of how I understand God and His connection to my suffering.

Hope. At times I have questioned that too. At times, with a worn down body and a worn out spirit, I have yelled at my husband, "THERE IS NO HOPE! WHY DO WE KEEP TRYING?! I AM DONE." At times, in my despair, all I can see of my life is that I am nothing. I lay in my bed. I am totally dependent. Not contributing. Stagnant. No purpose but to endure. Daily pain. Suffering.

"There is surely a future hope for you, and your hope will not be cut off." Psalm 23:18

My well of hope for myself has often run dry and I have had to dip into the hope of others: the hope of my husband, my family, my friends, and my forum family. I have been sustained by their hope for me when I had none left.

Fly with hope. This is the email "prefix" I chose. I am still figuring out what it means for me. I am not free from my suffering when I have hope, but it definitely gives me a sense of freedom from the despair that suffering can bring. Hope keeps me going and gets me through.

"Those who put their hope in the Lord will renew their strength.
They will soar on the wings of eagles.
They will run and not grow weary.
They will walk and not be faint." Isaiah 40:31

Wednesday, January 7, 2009

Learning From My Mistakes

I have made a lot of mistakes along the way in learning how to be a good patient. And one of the most important things I've discovered is how essential it is to be an educated patient. I think we can all learn from each others mistakes. So, I'm going to share some of mine with you in hopes that you gain something from them.

The first time I was hospitalized for Migraine was November 2, 2005. My primary care doctor admitted me to a local hospital and referred me to a neurologist who performed all kinds of tests: CT scan of head/neck, CT scan of sinuses, MRI of head/neck, lumbar puncture, EEG. You name it, I had it done to me. I was discharged after four days even though the only thing that had changed since I had been admitted was that I had gone from eating nothing to starting to eat crackers and applesauce.

Lesson #1 Hospitals are not a cure.

This experience was my first wake-up call that hospitals are not the end-all, be-all for care. I don't know about other diseases, but I certainly believe this to be true for Migraines. Before that hospital stay, I had the belief that if I went to a hospital, "they" figured out what was wrong, "they" did something about it, and when I went home it was because "they" had gotten me better. What I have since learned that it is the communication and work that I do with my specialist that can further better management of my condition. Hospitals can be a tool, but not a fix.

After being discharged November 5, 2005, I was bed bound for all of November and part of December. The neurologist had at first diagnosed me as having some sort of inner ear vestibular balance disorder because of all the dizziness I was having. So, for weeks, I thought that is what I had. It wasn't till a few months later I saw him write "Migraine" on a form for my FMLA even though we had never discussed it.

Lesson #2 Ask questions. Ask lots of questions.

Even though he had diagnosed me as having a balance disorder, this neurologist was prescribing me medications for the head pain I was having. I guess he thought the two were related or perhaps he had "Migraine" in the back of his head. If he did, he did not discuss it with me. The medications he prescribed are ones that I now know can cause Medication Overuse Headache. If this neurologist knew of the potential harm the medications could cause me, he did not alert me to it.

For five weeks, I took Toradol four times a day, daily, as prescribed. This medication can have severe side effects if over-used. According to prescribing information, "Toradol is intended for short-term use only, usually up to five days. Larger doses or longer treatment may not provide increased pain relief and may increase risk of serious side effects." Mostly, I wish that I had not blindly taken medication without educating myself about it.

Lesson #3 Know what you are putting into your body.

When I started to have stomach pain that ended up being Toradol-related, this neurologist stopped the Toradol and changed me to Esgic Plus (a barbiturate with acetaminophen) to be taken four times a day, daily. I had severe pain. I trusted that the neurologist knew best, so I took it. I still have a prescription from my last visit with him that he wrote for 100 pills of Esgic Plus that I never filled. Months later, we found out from another doctor that my liver enzymes were dangerously high. I should never have been taking acetaminophen so often for so long. Shame on my neurologist for not warning me of this. But, even more so, shame on me for not educating myself on the potential side-effects of the medication.

Lesson #4 Get a second opinion...always!

Despite a daily headache, I went back to work in January 2006 taking Esgic Plus daily as prescribed. As any medication that is not intended to be prescribed daily, it quickly became ineffective and I experienced increasing pain not to mention horrible side-effects. I often called this neurologist about the side effects and pain. In hindsight, I realize that he treated me more as a pebble in his shoe that would not go away, than a patient that needed urgent treatment.

Lesson #5 Don't trust that your physician has your best interest in mind. Trust between a patient and a physician is earned and worked at being kept.

Toradol and Esgic Plus were not the only meds this neurologist tried with me. He had me try Midrin, and a couple triptans including Reglan and Axert. None were effective. But, knowing what I know now about Medication Overuse Headache, I understand that nothing was going to be effective until I stopped taking the offending medications.

Lesson #6 You know your body better than anyone else. Trust your gut.

Starting in late December 2005, this neurologist started me on a tricyclic anti-depressant for pain. When I became severely anxious and suicidal, he prescribed higher doses. When I called him concerned that my pain was not responding and my anxiety was getting worse, he added another anti-depressant, an SSRI. Towards the end of January 2006, my then-fiance showed up at my work-place during the work day (!) and took me to a psychiatrist appointment he had not told me he had scheduled for me because he was so concerned. The psychiatrist determined the anti-depressants were the cause of my anxiety and suicide attempts. Once the medications were out of my system, the anxiety disappeared as well as the suicidal thoughts and attempts. The neurologist was out of the country during those weeks so he was not consulted.

February 8th, 2006 was the last day I worked. I had talked to my neurologist on the phone from my office at work that day. I was having severe cramps that I felt was a side-effect from one of the medications. I was also in an incredible amount of head pain. It was so bad that before my last meeting of the day, I was laying down on the fetal position on the floor. He told me to discontinue the Esgic Plus and that we would start over with something else when I saw him at my next appointment the next week. That night, my then-fiance took me to the emergency room. The ER doctor prescribed Percocet. Didn't work. I went back to the ER two days later and was prescribed more Percocet. I took it every day, multiple times a day, for a week. Did I know this medication would also cause Medication Overuse Headache? No.

Lesson # 7 Do your own research! If you do not fight for yourself, who will?

On February 14th, 2006, I went to see this neurologist again. I was in the worst state I had been up to that point. When my then-fiance asked the neurologist what he thought was causing my pain. The neurologist said I must be depressed.

Lesson #8 "Fire his sorry butt." (I'm borrowing this quote from the lovely people I converse with at MyMigraineConnection, especially Nancy Bonk, who I have heard say this many times. She along with many others helped me become more empowered about making myself an important part of my health care team.)

At that point it was obvious, and I finally realized I needed to get a second opinion. So, I fired neurologist #1's sorry butt. On February 17th, 2006, I saw a headache specialist for the first time and everything changed. Well, by everything, I mean, for the first time, someone identified what I had, gave it a name, explained it to me and most importantly gave me hope.