Today is day #27 for the National Migraine Awareness Month Blogging Challenge. The prompt is "In my Head and Heart. Who inspires you to keep trying and not give up, despite your Migraines?"
I am incredibly blessed to have a father who is a model of grace, perseverance and belief in both good times and difficult times. His personal battle with cancer has taught me what it is to lead a life of hope and joy. Daddy has battled with cancer twice in his life. During his first battle, he was recovering from surgery as my mother, who also had cancer, was being brought into the hospital for what was to begin her last days. As he awoke from surgery, we had to tell him the news about mom. While many people would be overwhelmed and incapacitated by their own pain - both physical and emotional - my father showed us all what it was like to have grace under pressure. He encouraged my mom and the three of us with his love, his presence, his faith and his laughter even though he was experiencing significant personal pain. He helped us all to celebrate my mom's life, our faith and our memories as a family by his example.
Twelve years later, Dad was diagnosed with cancer again. This time the prognosis was much more grim, and he was given a 20 percent chance of recovery. At the age of 81, he underwent a very complex and difficult surgery with significant pain and rehabilitation. I watched as my father held on to the Lord with unwavering faith. It was as if he took his illness as an opportunity to love others and to shower them with the grace that he has found in our Lord. He chose to say "thank you" for something that he did not understand but trusted could bring glory to God rather than asking why this had happened. Rather than complaining, he went out of his way to find means to encourage others. I have never seen anyone deal with adversity with the grace, faith and dignity that my dad did.
Dad is my shining example of what it is to persevere with hope in the midst of hard times. When I think about complaining, I learn from his example of praising. When I think about giving up, I think of his example of doing whatever it took. When I think about withdrawing, I think about how dad reached out to and touched so many people in the midst of his difficulty. When I think that there is no hope, I think of how my dad, who was told that there was little hope, hung on to hope in a way that everyone who knew him was effected by. When I think that there is little I have to offer because of my situation, I see all that dad did for others in the midst of his illness.
In addition to all of this, my father has been one of my biggest supporters during this time of chronic, intractable Migraines. He has been there for me in every situation. He has helped me out financially; he has supported me emotionally, and he has loved me unconditionally. I saw Romans 12:12 personified in my dad: "Be joyful in hope; patient in affliction and faithful in prayer."
I am so thankful for my dad. He inspires me every day to be a better, more loving, more giving and more faithful person. My prayer is that I might follow his example in praising God, serving others, and rejoicing in the good that surrounds me even when things are at their most difficult.
Wednesday, June 27, 2012
Monday, June 25, 2012
National Migraine Awareness Month #24: A Letter to God
The prompt for the 24th day of this National Migraine Blogging Challenge is "Dear Genie. Put together a wish list for your life." I have decided to write a letter to my Heavenly Father who is the source of all my help.
Dear Father,
Wow - I've been asked to put together a wish list for my life. So many things instantly come to my mind - my health, the health and well-being of those I love, financial security, the desire to engage in my profession. I think of so many prayers that I have prayed to You. They have been heartfelt, earnest, even desperate, prayers asking for relief from the life I live with Chronic Migraines. There are even times when I have asked that You let my life here on earth just end so that I might be free of the pain, the fear and the loneliness. I know that You are a mighty God and are capable of performing great miracles. Yet, for some reason, You allow me to continue to deal with my Migraines daily. I have to be honest and tell You that my human nature often screams out the question "Why?" I feel like I could do so much more for You and others if I didn't have these Migraines and that my life would be so much richer.
Yet, when I really examine my heart, what I want most is to be conformed to Your character and to really grow in my knowledge and intimacy with You. This is a scary thing to say as I know that it means laying all my desires and hopes at Your feet and saying "not my will, by Your will be done." I don't even know why that is so frightening. You have, after all, shown Yourself to be faithful and loving and compassionate over and over again. I know that it is often the hard things in life which cause me to draw closest to You. If left to my own devices, I would rely on my own intellect and ability and would surely fall short, as well as miss the blessing of experiencing You as my Abba, my daddy.
Yes, Father, I desperately want to be free of Migraines. Yet, when I am forced to answer a question such as that laid before me in this challenge, I know that what I want more than anything is to be your faithful daughter. I want to be the daughter that turns to her Heavenly Father with same kind of certainty and trust that I turn to my earthly dad with. I want to praise You for where You have me in my life and, as difficult as it is, to thank You for what You are doing in my life through Migraines.
I certainly don't think that my Migraines are a part of some divine plan, but I do believe that You can and do use everything that occurs in my life for good. Please take this time and use it for good. Let me be a person who nestles into Your arms and waits expectantly for Your divine will. I pray that out of this time that I might know You more intimately, love you with all my heart and soul, and follow You more closely so that I might know and reflect Your character.
I pray that when people see me coping with Migraine disease that they will see a woman who has put her unwavering trust in her God. Help my words and my actions to not be empty, but to be full of purpose. I ask that when I am feeling at my worst and feel that there is little hope that I will find great delight in knowing You. Help me to remember the joy of knowing that I do not
have to cling to You because You cling to me!
My two greatest wishes are that through these experiences that I might come to know and love You more and that I will be a reflection of Your light and hope for the world. I pray that the way in which I handle my adversity will be a reflection of my love and trust in You.
Dear Father,
Wow - I've been asked to put together a wish list for my life. So many things instantly come to my mind - my health, the health and well-being of those I love, financial security, the desire to engage in my profession. I think of so many prayers that I have prayed to You. They have been heartfelt, earnest, even desperate, prayers asking for relief from the life I live with Chronic Migraines. There are even times when I have asked that You let my life here on earth just end so that I might be free of the pain, the fear and the loneliness. I know that You are a mighty God and are capable of performing great miracles. Yet, for some reason, You allow me to continue to deal with my Migraines daily. I have to be honest and tell You that my human nature often screams out the question "Why?" I feel like I could do so much more for You and others if I didn't have these Migraines and that my life would be so much richer.
Yet, when I really examine my heart, what I want most is to be conformed to Your character and to really grow in my knowledge and intimacy with You. This is a scary thing to say as I know that it means laying all my desires and hopes at Your feet and saying "not my will, by Your will be done." I don't even know why that is so frightening. You have, after all, shown Yourself to be faithful and loving and compassionate over and over again. I know that it is often the hard things in life which cause me to draw closest to You. If left to my own devices, I would rely on my own intellect and ability and would surely fall short, as well as miss the blessing of experiencing You as my Abba, my daddy.
Yes, Father, I desperately want to be free of Migraines. Yet, when I am forced to answer a question such as that laid before me in this challenge, I know that what I want more than anything is to be your faithful daughter. I want to be the daughter that turns to her Heavenly Father with same kind of certainty and trust that I turn to my earthly dad with. I want to praise You for where You have me in my life and, as difficult as it is, to thank You for what You are doing in my life through Migraines.
I certainly don't think that my Migraines are a part of some divine plan, but I do believe that You can and do use everything that occurs in my life for good. Please take this time and use it for good. Let me be a person who nestles into Your arms and waits expectantly for Your divine will. I pray that out of this time that I might know You more intimately, love you with all my heart and soul, and follow You more closely so that I might know and reflect Your character.
I pray that when people see me coping with Migraine disease that they will see a woman who has put her unwavering trust in her God. Help my words and my actions to not be empty, but to be full of purpose. I ask that when I am feeling at my worst and feel that there is little hope that I will find great delight in knowing You. Help me to remember the joy of knowing that I do not
have to cling to You because You cling to me!
My two greatest wishes are that through these experiences that I might come to know and love You more and that I will be a reflection of Your light and hope for the world. I pray that the way in which I handle my adversity will be a reflection of my love and trust in You.
As Keith Green sang,
"Make my life a prayer to You.
I want to do what You want me to.
No empty words and no white lies;
No token prayers; No compromise.
I want to shine the light
You gave through Your Son
who You sent to save me
from myself and my despair.
It comforts me to know you are really there.
I want to thank you now for being patient with me.
Oh it's so hard to see when my eyes are on me....
I want to die and let You give Your life to me,
so I might live and share the hope You gave to me,
the love that set me free.
I want to tell the world out there,
You're not some fable or fairy tale
that I've made up inside my head,
You're God the Son; You've risen from the dead!"
Thank you for the hope You've given me which is surely greater than any wish a genie might impart!
Your loving daughter,
Cyn
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
Saturday, June 23, 2012
National Migraine Awareness Month #23: Oh, The Things I've Done!
Today is #23 of the National Migraine Awareness Month Blogging Challenge. The prompt is "I Drank the Kool-Aid! We all try things out of desperation, even when our common sense is telling us they're not going to do anything. Share your experience with this."
My hometown has an Italian festival every year replete with Italian food, vendors, music and bocce ball. For a number of years, a group of us would go together to enjoy being outside and peruse the many activities.
As we strolled through the vendors, we came upon a couple of men who had a large sign which proclaimed that they could get rid of a Migraine in five minutes. They purportedly did so by placing an odd looking electronic helmet on the head of the individual with the Migraine and then ran some kind of vibration through it. Of course, everyone who was with me wanted me to try this great new invention. I had just returned from Mayo Clinic where I had spent seven weeks trying to find relief from my Migraines, so I decided what the heck. Maybe these two hawkers at an Italian Festival had an answer that the numerous doctors at Mayo Clinic did not! (heavy sarcasm)
One of the gentlemen had me sit on a stool in his tent and placed his gadget of supposed Migraine miracles upon my head. Almost immediately I became nauseous. He assured me that there was nothing to worry about and that nausea was sometimes a part of the healing process. Within three minutes, my Migraine escalated from about a level 3 to a level 7, and I was becoming dizzy as I frequently do from Migraines.
I told him that I needed to stop. To this, he asked me how long I had been having Migraines. When I told him that it was since early childhood, he breathed an "aha" - telling me that with my lengthy experience with Migraines that it would probably take ten minutes to get rid of it instead of five! All I wanted by this time was out! I had him remove his miracle cure and walked drunkenly away from his booth wondering how I had once again fallen for yet another charlatan who was trying to make money off the desire of people to become well. As I walked away, he followed me, telling me that I had not given it enough of a chance and that if I only purchased it and used it at home, I would become a new woman in regards to my Migraines!
Thank God, I was not stupid enough to buy the baloney that he was selling! However, if you were to look around my home (or have been to any of my numerous garage sales), you will see hundreds of gadgets and potions which have been purchased in the vain attempt to become pain free. I have to also confess to visiting almost every doctor, chiropractor, massage therapist, physical therapist and alternative medicine practitioner who anyone has told me has helped a friend of a friend of a friend with Migraines! And although I have stopped this madness for the most part, I have to confess that when my Migraines are at their worse and I am up in the middle of the night suffering, I still have a tendency to search the Internet for that one thing that I (and all the doctors I've been to) might have missed! Oy Vey!
My hometown has an Italian festival every year replete with Italian food, vendors, music and bocce ball. For a number of years, a group of us would go together to enjoy being outside and peruse the many activities.
As we strolled through the vendors, we came upon a couple of men who had a large sign which proclaimed that they could get rid of a Migraine in five minutes. They purportedly did so by placing an odd looking electronic helmet on the head of the individual with the Migraine and then ran some kind of vibration through it. Of course, everyone who was with me wanted me to try this great new invention. I had just returned from Mayo Clinic where I had spent seven weeks trying to find relief from my Migraines, so I decided what the heck. Maybe these two hawkers at an Italian Festival had an answer that the numerous doctors at Mayo Clinic did not! (heavy sarcasm)
One of the gentlemen had me sit on a stool in his tent and placed his gadget of supposed Migraine miracles upon my head. Almost immediately I became nauseous. He assured me that there was nothing to worry about and that nausea was sometimes a part of the healing process. Within three minutes, my Migraine escalated from about a level 3 to a level 7, and I was becoming dizzy as I frequently do from Migraines.
I told him that I needed to stop. To this, he asked me how long I had been having Migraines. When I told him that it was since early childhood, he breathed an "aha" - telling me that with my lengthy experience with Migraines that it would probably take ten minutes to get rid of it instead of five! All I wanted by this time was out! I had him remove his miracle cure and walked drunkenly away from his booth wondering how I had once again fallen for yet another charlatan who was trying to make money off the desire of people to become well. As I walked away, he followed me, telling me that I had not given it enough of a chance and that if I only purchased it and used it at home, I would become a new woman in regards to my Migraines!
Thank God, I was not stupid enough to buy the baloney that he was selling! However, if you were to look around my home (or have been to any of my numerous garage sales), you will see hundreds of gadgets and potions which have been purchased in the vain attempt to become pain free. I have to also confess to visiting almost every doctor, chiropractor, massage therapist, physical therapist and alternative medicine practitioner who anyone has told me has helped a friend of a friend of a friend with Migraines! And although I have stopped this madness for the most part, I have to confess that when my Migraines are at their worse and I am up in the middle of the night suffering, I still have a tendency to search the Internet for that one thing that I (and all the doctors I've been to) might have missed! Oy Vey!
Friday, June 22, 2012
National Migraine Awareness Month #22: The Game Changer
Day 22 of the National Migraine Awareness Month Blogging Challenge: "The Game Changer - Tell us about a time your plans changed due either to an unexpected Migraine or an unexpected Migraine-free experience."
White Water Rafting in Costa Rica
(That's me on the far right.)
For a person who was always very timid as a child, I became something of an adrenaline junkie as an adult. I love roller coasters, zip lining and white water rafting. For years, my goal was to spend a week white water rafting and camping along the Colorado River in the Grand Canyon. I read books about it and researched it. I planned everything I would do while on that trip - take a helicopter ride down to the launch point; scream with excitement as I rode the waves; sit by the camp fire at night while served gourmet meals; lie in my sleeping bag looking up at the stars; marvel at the magnificence of the Grand Canyon!
As my fiftieth birthday drew near, my sweet father decided that he would treat me and a friend to a white water rafting trip in the Grand Canyon. On my birthday, he gave me a Fodor's guide to the Grand Canyon so I could plan my trip. I cannot think of a time when I was more excited about doing anything. However, it was during this time that my Migraines were becoming more frequent and more severe.
Instead, my birthday gift became a trip to Mayo Clinic, Dallas, TX and Philadelphia, PA to try to find an answer for my Migraines. While I am so grateful to have had the financial support of my father to try to get treatment for my Migraines, my eyes still catch sight of that Fodor guide to the Grand Canyon on my book shelf, and I think of how different things could have been. Instead of building memories about medications, side effects, hospitals and doctors, I could have built memories of laughter, adrenalin, fun with my friend and awe-inspiring beauty that would have been with me for a life time.
Yes, Migraines have caused many changes in my game plans over the last five years. They have changed what I wanted to do with my career, what I wanted to do with my family, and what I wanted to do with my friends. However, even more so, Migraines have been a life changer. It's just not realistic for me to make plans any more. It seems that I am always having to cancel anything that I plan because I never know where I will be on the spectrum of pain from day to day.
While I regret missing the "grand" things such as white water rafting or taking my niece and nephew to swim with dolphins, I think it is the little day to day things that I miss the most. There have been so many birthdays and special occasions, activities that my niece and nephew participated in and outings with friends or family that I have had to miss. Unless you've been there, it's very difficult to describe what it's like to be at home with a Migraine when the people you love are busy engaging in activities of which you want to be a part. Things that I've missed that I can't get back include my niece's plays or my nephew's soccer games, being there for my dad when he was sick, going to a concert with my friends, sitting outside by the pool and cooking out with my family.
Being able to participate in grand adventures is great, but it is truly the everyday adventures that I wish I could be a part of the most. However, I'm keeping my eyes on that Fodor book because I'm just going to keep believing that my Migraines will one day be under control, and I can once again jump into the every day adventures and the grand adventures with all the gusto one can muster!
Grand Canyon, here I come - I don't know when, but I'm coming!
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
Thursday, June 21, 2012
National Migraine Awareness Month #21: Living With Anticipatory Fear
For the 21st prompt of the National Migraine Awareness Month Blogging Challenge, we are asked to identify our biggest Migraine related fear and how we cope with it.
There are a number of fears that come along with having chronic, intractable Migraines.
If I were to be at my most honest and most transparent with you, I have to admit that the question that plagues me the most is "If nothing changes, what will my life be like ten years from now?" It is so easy to get caught up in anticipatory fear - imagining the worse. There are times when I look forward and all I see is an old, lonely, financially unstable woman worn out by the struggle of just making it day to day besieged by pain and anxiety.
Yet, the one thing that I have learned the most from my journey with chronic Migraines is that anticipatory fear or living with life's "what-ifs" is a futile and self-defeating behavior. As one who has a lot of time to think, I find that thinking about my health and my future is one of the most unproductive things I can do. It is when I focus on these things that my mind goes in a million different directions, and I drive myself crazy by thinking of all the things that could go wrong or that I miss or regret.
While I have always had a propensity for engaging in anticipatory fear, it has been magnified and put under a microscope over the last five years. Many of the things I have always dreaded are now my daily reality. Oddly enough, I am deeply grateful for this because what I have seen when I really look at my tendency to worry about the future and borrow trouble from tomorrow is that I rob today of any joy and peace that it could possibly have by doing so. AND, on top of that, fear and worry have absolutely no ability to change anything!!
It has caused me to ask significant, life changing questions of myself.
In an ideal world, I wouldn't have to make those choices; however, I cannot change the fact I currently have chronic, intractable Migraines and that those questions are no longer rhetorical. I have a choice, and it is not an easy one. It is a choice that I have to make again and again, moment by moment. I can allow Migraines to rob my life of all current and future hope, peace and joy, or I can strive with all of my might to live in the present, focusing on that which is positive rather than on that which produces fear and anxiety. Where do I want to put my efforts - in worry or in trying to overcome worry?
My current aspiration is to make Philippians 4:8 the sieve through which I view everything that happens to me. I constantly remind myself - "Finally, Cyndi, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things."
I am not a Pollyanna. I am by nature - a worrier. I have always looked at the glass half empty rather than half full. However, my life with chronic pain has convinced me that if I focus on fear and pain, there is absolutely no hope for the future. So with gritted teeth and determined mind, I thank God for what He is allowing me to experience, for out of it I am finally learning to not let fear control my life. At this time, when it makes more sense than ever before to be living with anticipatory fear, I am finally learning to live in the moment and to do so with a heart full of hope.
I do not know what my future holds. I could extrapolate and project what it might hold based upon what I experience today. However, if I even believe a minute portion of the promises that I find in Scripture; if I have even a glimmer of a belief that God is in control, I will continue to hold tightly to the truth that God has a future and a hope for me (Jeremiah 29:11). And most importantly, I will continue to believe that this future and hope are possible in any situation - even chronic pain. So I will constantly remind myself to hang my belief system regarding my life on what is written in Scripture rather than on my faulty, worry-ladened, doom-ridden natural inclinations.
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
There are a number of fears that come along with having chronic, intractable Migraines.
- Will I have enough money to pay my bills?
- What does my financial future hold?
- Will they ever come up with an effective treatment for my Migraines and pain?
- Will I ever get back to the career I love?
- Will my life ever be normal again?
If I were to be at my most honest and most transparent with you, I have to admit that the question that plagues me the most is "If nothing changes, what will my life be like ten years from now?" It is so easy to get caught up in anticipatory fear - imagining the worse. There are times when I look forward and all I see is an old, lonely, financially unstable woman worn out by the struggle of just making it day to day besieged by pain and anxiety.
Yet, the one thing that I have learned the most from my journey with chronic Migraines is that anticipatory fear or living with life's "what-ifs" is a futile and self-defeating behavior. As one who has a lot of time to think, I find that thinking about my health and my future is one of the most unproductive things I can do. It is when I focus on these things that my mind goes in a million different directions, and I drive myself crazy by thinking of all the things that could go wrong or that I miss or regret.
While I have always had a propensity for engaging in anticipatory fear, it has been magnified and put under a microscope over the last five years. Many of the things I have always dreaded are now my daily reality. Oddly enough, I am deeply grateful for this because what I have seen when I really look at my tendency to worry about the future and borrow trouble from tomorrow is that I rob today of any joy and peace that it could possibly have by doing so. AND, on top of that, fear and worry have absolutely no ability to change anything!!
It has caused me to ask significant, life changing questions of myself.
- Would I exchange a life of joy and peace for a pain free life?
- Would I exchange financial security for reliance upon my Lord and Savior?
- Would I give up finding my identity in the uncompromising love of God in order to find it in my career?
- Whose image of me do I hold of greatest esteem - that of family, friends and colleagues or that of my Heavenly Father?
In an ideal world, I wouldn't have to make those choices; however, I cannot change the fact I currently have chronic, intractable Migraines and that those questions are no longer rhetorical. I have a choice, and it is not an easy one. It is a choice that I have to make again and again, moment by moment. I can allow Migraines to rob my life of all current and future hope, peace and joy, or I can strive with all of my might to live in the present, focusing on that which is positive rather than on that which produces fear and anxiety. Where do I want to put my efforts - in worry or in trying to overcome worry?
My current aspiration is to make Philippians 4:8 the sieve through which I view everything that happens to me. I constantly remind myself - "Finally, Cyndi, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things."
I am not a Pollyanna. I am by nature - a worrier. I have always looked at the glass half empty rather than half full. However, my life with chronic pain has convinced me that if I focus on fear and pain, there is absolutely no hope for the future. So with gritted teeth and determined mind, I thank God for what He is allowing me to experience, for out of it I am finally learning to not let fear control my life. At this time, when it makes more sense than ever before to be living with anticipatory fear, I am finally learning to live in the moment and to do so with a heart full of hope.
I do not know what my future holds. I could extrapolate and project what it might hold based upon what I experience today. However, if I even believe a minute portion of the promises that I find in Scripture; if I have even a glimmer of a belief that God is in control, I will continue to hold tightly to the truth that God has a future and a hope for me (Jeremiah 29:11). And most importantly, I will continue to believe that this future and hope are possible in any situation - even chronic pain. So I will constantly remind myself to hang my belief system regarding my life on what is written in Scripture rather than on my faulty, worry-ladened, doom-ridden natural inclinations.
Wednesday, June 20, 2012
National Migraine Awareness Month : Playing Catch Up
I can't believe it is already day #20 of the Migraine Awareness Month Blogging Challenge. I had hoped to participate in this everyday, but between Migraines and a root canal, I have missed several of the last few days. So today, I'm going to address a couple of the issues from the blog challenges I missed over the last week.
#16 "Lead, Follow or Get out of the Way - Which role fits you and why?" I have been so blessed to be touched and changed by many of the wonderful leaders in the Migraine community. These people have made a significant difference in my life and for that I am profoundly grateful. I don't that I would describe myself as either a leader or a follower. I feel that my role at this time is to be one who comes along side and walks with other sufferers. I can think of no greater privilege and joy than being able to share life with my fellow Migraineurs. One of my favorite quotes is by Emerson: "To laugh often and much; To win the respect of intelligent people and the affection of children; To appreciate beauty; To find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; To know even one life has breathed easier because you have lived; That is to have succeeded." My deepest desire is that the people I interact with in the Migraine world will breathe a little easier because they know they have a friend, a supporter, a prayer warrior, and a co-journeyer who is willing to walk with them in their journey. I want to be one who encourages, shares information and empathizes. I want my friendship to be a safe place where one does not have to worry about being perfect, putting on a happy face or being condemned. I would like to be able to hold on to hope for others when they are feeling hopeless and to be one who will join hands with others as we go through this journey together.
#18 - "The Price is Right - what would you do for the Migraine community if money were no issue." My dream would be to develop a scholarship fund so that no Migraineur goes without treatment, medication or alternative treatments (physical therapy, psychological therapy, biofeedback, massage) because they cannot afford the treatment or the travel related expenses associated with it.
#19 - "The Match Game - Describe your perfect doctor to treat your Migraines.
#16 "Lead, Follow or Get out of the Way - Which role fits you and why?" I have been so blessed to be touched and changed by many of the wonderful leaders in the Migraine community. These people have made a significant difference in my life and for that I am profoundly grateful. I don't that I would describe myself as either a leader or a follower. I feel that my role at this time is to be one who comes along side and walks with other sufferers. I can think of no greater privilege and joy than being able to share life with my fellow Migraineurs. One of my favorite quotes is by Emerson: "To laugh often and much; To win the respect of intelligent people and the affection of children; To appreciate beauty; To find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; To know even one life has breathed easier because you have lived; That is to have succeeded." My deepest desire is that the people I interact with in the Migraine world will breathe a little easier because they know they have a friend, a supporter, a prayer warrior, and a co-journeyer who is willing to walk with them in their journey. I want to be one who encourages, shares information and empathizes. I want my friendship to be a safe place where one does not have to worry about being perfect, putting on a happy face or being condemned. I would like to be able to hold on to hope for others when they are feeling hopeless and to be one who will join hands with others as we go through this journey together.
#18 - "The Price is Right - what would you do for the Migraine community if money were no issue." My dream would be to develop a scholarship fund so that no Migraineur goes without treatment, medication or alternative treatments (physical therapy, psychological therapy, biofeedback, massage) because they cannot afford the treatment or the travel related expenses associated with it.
#19 - "The Match Game - Describe your perfect doctor to treat your Migraines.
- One who is up-to-date and knowledgeable about current Migraine treatments and those in the planning or research phase.
- One who is empathic and caring, as well as a good listener
- One who is able to express themselves well.
- One who has a good sense of humor.
- One who is patient and does not give up on their patients, no matter how difficult their Migraines are to treat.
- One who follows through on their ideas and suggestions.
- One who is open to input from the patient, as well as from other members of the patient's healthcare team.
- One who enjoys educating patients and their families through individual and group encounters, as well as written material.
- One who is accessible between standard appointments if needed.
- One who takes a holistic approach and provides information regarding alternative treatments, nutrition, exercise, supplements and other lifestyle changes.
- One is committed to doing whatever it takes to help the patient find hope and help with their Migraines.
- One who is financially affordable in all areas of their treatment.
- One who has an office designed for the comfort of Migraineurs.
- One who has put together a team of professionals who care about the patient and work together in a professional yet friendly and caring manner.
- One who sees the patient as a part of the treatment team.
- One who will coordinate with other members of my healthcare team.
Thursday, June 14, 2012
Migraine Awareness Month #14: There is Hope
For this fourteenth day of the Migraine Awareness Month Blogging Challenge, the prompt is "come up with a short, simple phrase or sentence that could be used when saying "Hello" or "Good-bye" that expresses your wishes for fellow Migraineurs.
As long as the sun shines, as long as children play and laugh, as long as the beauty of nature and the wisdom of man surrounds us, as long as God exists, there is always a whisper and a promise of HOPE!
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
Monday, June 11, 2012
Migraine Awareness Month #11: Say What?!
The prompt for today's Migraine Awareness Month Blogging Challenge is "Say What?! What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances."
There are always going to be times in life when someone says something you just can't believe. My all time favorite (in retrospect) is directly related to my life with Migraines.
Approximately twelve years ago, I was working as an associate professor and division director at a major university. At that time, my Migraines had not become chronic but were still a very real and present part of my life. As a result, our office had a long held policy of being scent-free since scents of most kinds are major Migraine triggers for me. My staff was incredibly supportive in following this policy, and the janitorial staff went to great lengths to use non-offending products as well. Little did I realize how blessed I was until Ms. X came to work for me.
During the general orientation, I told her of our policy and gave her a written copy of it as well. I thought little of this, since it had not been a problem for anyone up to this time. However, over the ensuing weeks, it became apparent that Ms. X not only used perfume but really liked it - a lot! As her supervisor, I sat down and began the difficult task of trying to explain that although I might like a scent it could still trigger a Migraine and that this was a medical necessity. It had nothing to do with her or her choice in perfume. It had to do with my overly sensitive nervous system. I went on to explain all that a Migraine entails for me and how it caused any work for the day to come to an end. She stared at me impassively as I spoke to her. We concluded with my asking her to please stop wearing her perfume while at work to which she replied "I'll think about it."
Say what?! (She was a new employee, under my supervision and had been faced with a medical concern. Ironically, one of the specific functions of our division was to provide accommodations for students with disabilities. This was surely not something that should cause a great deal of introspection.)
The next week came and went with no change in her "perfume habits." After re-addressing the issue with her and getting nowhere, I asked my neurologist to send a letter to the University stating my need to have a scent free environment due to health reasons. I once again sat down with Ms. X and showed her the letter. Our meeting ended amiably enough, and I thought all had been taken care of.
However, the next day the scent of perfume continued to waft through the office. That same day I also received a phone call from the Vice Chancellor for Equity and Diversity to let me know that a complaint had been lodged against me by none other than Ms. X. I was told that she had lodged formal complaint on the basis of discrimination. I was totally baffled and went to the meeting to find out that she believed my "dislike" of her perfume had to do with the brand she used and that I was using it as a means to discriminate against her.
Here I was, an individual with a legitimate disability covered by the ADA asking for an accommodation, being told that I was the one who was discriminating. I didn't think it was possible to be any more shocked than I was at that moment. I provided my letter to the Vice Chancellor, and he let Ms. X know that she needed to cease wearing the perfume.
By this time, things were quite uncomfortable in the office due to this situation, and I was just relieved that the whole thing was settled. (Or so I thought.) Beginning the very next day, she was once again wearing the perfume. I tried to convince myself that it was an olfactory hallucination and to just ignore it. However, after throwing up at work several days in a row and having to leave due to excruciating pain, I finally asked one of my other employees if she could also smell the perfume. She replied in the affirmative.
Great - now I had dealt with this employee one-on-one, gotten documentation from my doctor, gone through a diversity hearing, and thought everything was settled. I agonized over how to handle this without it becoming an even more contentious topic. I asked Ms. X to come to my office and asked her if she was still wearing the perfume to which she replied in the negative. Now what was I suppose to do? I didn't want to call her an outright liar, so I let things go on as they were for another couple of weeks as my Migraines became more frequent and more severe.
Finally my work was so compromised that I had no alternative but to have yet another conversation with Ms. X. I told her that it was obvious that she was still wearing the perfume and that it HAD to stop. She looked me, cool as a cucumber, told me that I was not the only one with a "disability" (emphasis on sarcasm) and that she had a "personal odor" condition which necessitated her wearing her perfume. As I stared at her dumbfounded, she proceeded to point to her lap and tell me that I could smell her there if I didn't believe it.
Say What?! Had an employee really just told me to smell her privates!? Yes, indeed, she had!
Things were later resolved with this employee through her resignation due to the "adverse" working environment, and I was fully backed and supported by the University. However, to this day, I cannot believe anyone went to such efforts to wear perfume knowing that it caused another person to become ill.
The bottom line is just when you think you've heard it all, you probably haven't!
Say What?!
Approximately twelve years ago, I was working as an associate professor and division director at a major university. At that time, my Migraines had not become chronic but were still a very real and present part of my life. As a result, our office had a long held policy of being scent-free since scents of most kinds are major Migraine triggers for me. My staff was incredibly supportive in following this policy, and the janitorial staff went to great lengths to use non-offending products as well. Little did I realize how blessed I was until Ms. X came to work for me.
During the general orientation, I told her of our policy and gave her a written copy of it as well. I thought little of this, since it had not been a problem for anyone up to this time. However, over the ensuing weeks, it became apparent that Ms. X not only used perfume but really liked it - a lot! As her supervisor, I sat down and began the difficult task of trying to explain that although I might like a scent it could still trigger a Migraine and that this was a medical necessity. It had nothing to do with her or her choice in perfume. It had to do with my overly sensitive nervous system. I went on to explain all that a Migraine entails for me and how it caused any work for the day to come to an end. She stared at me impassively as I spoke to her. We concluded with my asking her to please stop wearing her perfume while at work to which she replied "I'll think about it."
Say what?! (She was a new employee, under my supervision and had been faced with a medical concern. Ironically, one of the specific functions of our division was to provide accommodations for students with disabilities. This was surely not something that should cause a great deal of introspection.)
The next week came and went with no change in her "perfume habits." After re-addressing the issue with her and getting nowhere, I asked my neurologist to send a letter to the University stating my need to have a scent free environment due to health reasons. I once again sat down with Ms. X and showed her the letter. Our meeting ended amiably enough, and I thought all had been taken care of.
However, the next day the scent of perfume continued to waft through the office. That same day I also received a phone call from the Vice Chancellor for Equity and Diversity to let me know that a complaint had been lodged against me by none other than Ms. X. I was told that she had lodged formal complaint on the basis of discrimination. I was totally baffled and went to the meeting to find out that she believed my "dislike" of her perfume had to do with the brand she used and that I was using it as a means to discriminate against her.
Here I was, an individual with a legitimate disability covered by the ADA asking for an accommodation, being told that I was the one who was discriminating. I didn't think it was possible to be any more shocked than I was at that moment. I provided my letter to the Vice Chancellor, and he let Ms. X know that she needed to cease wearing the perfume.
By this time, things were quite uncomfortable in the office due to this situation, and I was just relieved that the whole thing was settled. (Or so I thought.) Beginning the very next day, she was once again wearing the perfume. I tried to convince myself that it was an olfactory hallucination and to just ignore it. However, after throwing up at work several days in a row and having to leave due to excruciating pain, I finally asked one of my other employees if she could also smell the perfume. She replied in the affirmative.
Great - now I had dealt with this employee one-on-one, gotten documentation from my doctor, gone through a diversity hearing, and thought everything was settled. I agonized over how to handle this without it becoming an even more contentious topic. I asked Ms. X to come to my office and asked her if she was still wearing the perfume to which she replied in the negative. Now what was I suppose to do? I didn't want to call her an outright liar, so I let things go on as they were for another couple of weeks as my Migraines became more frequent and more severe.
Finally my work was so compromised that I had no alternative but to have yet another conversation with Ms. X. I told her that it was obvious that she was still wearing the perfume and that it HAD to stop. She looked me, cool as a cucumber, told me that I was not the only one with a "disability" (emphasis on sarcasm) and that she had a "personal odor" condition which necessitated her wearing her perfume. As I stared at her dumbfounded, she proceeded to point to her lap and tell me that I could smell her there if I didn't believe it.
Say What?! Had an employee really just told me to smell her privates!? Yes, indeed, she had!
Things were later resolved with this employee through her resignation due to the "adverse" working environment, and I was fully backed and supported by the University. However, to this day, I cannot believe anyone went to such efforts to wear perfume knowing that it caused another person to become ill.
The bottom line is just when you think you've heard it all, you probably haven't!
Saturday, June 9, 2012
Migraine Awareness Month Challenge #9 - A Day Full of Laughter
Today is #9 in the Migraine Awareness Month Blogging Challenge. The topic for today is "Day Dream Believer. Describe your dream day - without a Migraine to hold you back."
Just the prospect of this makes me like a little girl at Christmas time, full of anticipation and excitement. What day should I plan - a gloriously "normal" day, a day at the beach, a day white water rafting, a day at Disneyworld, a trip to New England for continuing education with my mentors and a jaunt into New York to see a play, a trip to Italy or Africa, the opportunity to go and visit my grandmother in San Antonio? So many enticing possibilities. However, I think if I must choose just one, it will be the opportunity to stuff every bit of fun and laugher I possibly could into one perfectly "normal" day.
I'd awake, get dressed and go throughout the house opening wide all of my curtains - letting the sunshine spill in with no fear of pain. I'd put on my favorite playlist and let music swell throughout my home.
I'd then get ready for work and go and see the amazing families and children with whom I have the privilege of working as a play therapist. Marlie, my therapy dog, and I would jump in the car, riding with the windows down, and hurry to get the play room ready for the special kids who would come. We'd spend the day playing in the sandbox, creating crafts, playing in the playhouse, creating puppet shows, laughing loudly, and listening intently. Noise would be of no concern, and the playroom would ring with the therapeutic sounds of children playing out their fears, their desires, their needs, and their joys.
During lunch, I would walk Marlie around the block and then sit down with my dad, sister and brother for lunch. I'd order a Diet Coke - the nectar of the gods -without having to worry about the aspartame. We'd laugh and reminisce as we like to do about all the funny Jordan antics through the years, remembering mom as if she were still with us. We'd revel in being together the same unit as we use to be years ago, only older now!
Yet because it is my dream day, there would also be time to visit and laugh with my niece and nephew and just enjoy the overwhelming joy I get from being with them and loving them! There would also have to be time to spend with my sister-in-law, maybe at Starbucks which is one of her favorite places, just because she has become one of my dearest friends, and we'd talk about the kids and my brother and other things we held dear.
After work, I'd meet up with friends for dinner - preferably sitting outside to enjoy the sunshine and the weather. As use to be, I'd have to stifle the loudness of my laughter as I relished in the fun and friendship that abounded. There would be stories of past escapades and ones to come. Each of us would leave with our jaws and stomachs aching from the laughter having lost any mascara that we might have had on.
Because it is my dream day, we would then go to a Kathy Troccoli or Chris Tomlin concert and sit down front where we could see and hear everthing without any need to worry about the lights or the sounds. We'd stand and sing along, praising God for His wonderful goodness. We'd laugh over my inevitable tears of joy and feel the bonds of our friendships growing even stronger.
Because in a dream day, we would have unlimited energy, we would head back to my clean and organized home and get out the coke and M&M's for a rousing game of cards complete with James Taylor and Carole King singing loudly in the background. We'd play and laugh until one of our friends (you know who you are) fell asleep on the couch and then we'd keep begging her to play just one more round. We'd end up in giggles that we could not stop because we were so tired but having so much fun.
Because it would then be in the wee hours of the morning, I'd beg the one who fell asleep to spend the night rather than driving home so tired, and we'd sit in the dark and talk about the day, get into one of our silly deep discussions about nothing important, read a devotional together and then sit until she once again fell asleep on the couch.
I'd then gather up my puppies and head for my bed where I would pull out a favorite mystery book and read until I could barely keep my eyes open. I would sink into sleep full of joy and praise and excitement for the blessings of such a wonderfully normal day. And as I did so, I would pray that there could be many, many more gloriously normal days full of so many of the things I use to take for granted.
"I love people who make me laugh. I honestly think it's the thing I like most, to laugh. It cures a multitude of ills. It's probably the most important thing in a person." Audrey Hepburn
"Against the assault of laughter, nothing can withstand." Mark Twain
"There is nothing in the world so irresistibly contagious as laughter and good humor." Charles Dickens
"Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, 'The Lord has done great things for us'!" Psalm 126:2
Just the prospect of this makes me like a little girl at Christmas time, full of anticipation and excitement. What day should I plan - a gloriously "normal" day, a day at the beach, a day white water rafting, a day at Disneyworld, a trip to New England for continuing education with my mentors and a jaunt into New York to see a play, a trip to Italy or Africa, the opportunity to go and visit my grandmother in San Antonio? So many enticing possibilities. However, I think if I must choose just one, it will be the opportunity to stuff every bit of fun and laugher I possibly could into one perfectly "normal" day.
I'd awake, get dressed and go throughout the house opening wide all of my curtains - letting the sunshine spill in with no fear of pain. I'd put on my favorite playlist and let music swell throughout my home.
I'd then get ready for work and go and see the amazing families and children with whom I have the privilege of working as a play therapist. Marlie, my therapy dog, and I would jump in the car, riding with the windows down, and hurry to get the play room ready for the special kids who would come. We'd spend the day playing in the sandbox, creating crafts, playing in the playhouse, creating puppet shows, laughing loudly, and listening intently. Noise would be of no concern, and the playroom would ring with the therapeutic sounds of children playing out their fears, their desires, their needs, and their joys.
During lunch, I would walk Marlie around the block and then sit down with my dad, sister and brother for lunch. I'd order a Diet Coke - the nectar of the gods -without having to worry about the aspartame. We'd laugh and reminisce as we like to do about all the funny Jordan antics through the years, remembering mom as if she were still with us. We'd revel in being together the same unit as we use to be years ago, only older now!
Yet because it is my dream day, there would also be time to visit and laugh with my niece and nephew and just enjoy the overwhelming joy I get from being with them and loving them! There would also have to be time to spend with my sister-in-law, maybe at Starbucks which is one of her favorite places, just because she has become one of my dearest friends, and we'd talk about the kids and my brother and other things we held dear.
After work, I'd meet up with friends for dinner - preferably sitting outside to enjoy the sunshine and the weather. As use to be, I'd have to stifle the loudness of my laughter as I relished in the fun and friendship that abounded. There would be stories of past escapades and ones to come. Each of us would leave with our jaws and stomachs aching from the laughter having lost any mascara that we might have had on.
Because it is my dream day, we would then go to a Kathy Troccoli or Chris Tomlin concert and sit down front where we could see and hear everthing without any need to worry about the lights or the sounds. We'd stand and sing along, praising God for His wonderful goodness. We'd laugh over my inevitable tears of joy and feel the bonds of our friendships growing even stronger.
Because in a dream day, we would have unlimited energy, we would head back to my clean and organized home and get out the coke and M&M's for a rousing game of cards complete with James Taylor and Carole King singing loudly in the background. We'd play and laugh until one of our friends (you know who you are) fell asleep on the couch and then we'd keep begging her to play just one more round. We'd end up in giggles that we could not stop because we were so tired but having so much fun.
Because it would then be in the wee hours of the morning, I'd beg the one who fell asleep to spend the night rather than driving home so tired, and we'd sit in the dark and talk about the day, get into one of our silly deep discussions about nothing important, read a devotional together and then sit until she once again fell asleep on the couch.
I'd then gather up my puppies and head for my bed where I would pull out a favorite mystery book and read until I could barely keep my eyes open. I would sink into sleep full of joy and praise and excitement for the blessings of such a wonderfully normal day. And as I did so, I would pray that there could be many, many more gloriously normal days full of so many of the things I use to take for granted.
"I love people who make me laugh. I honestly think it's the thing I like most, to laugh. It cures a multitude of ills. It's probably the most important thing in a person." Audrey Hepburn
"Against the assault of laughter, nothing can withstand." Mark Twain
"There is nothing in the world so irresistibly contagious as laughter and good humor." Charles Dickens
"Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, 'The Lord has done great things for us'!" Psalm 126:2
Thursday, June 7, 2012
Migraine Awareness Month Challenge #7: A Letter to Those I Love
Today's prompt for the Migraine Awareness Blogger's Challenge is "List Topper: There are lots of myths and misconceptions about Migraine. Which one tops your lists as the biggest and most common? What can we do to get the truth out there?"
My Dearest Friends and Family,
This is a very long post, but I don't think I've ever written anything that I want you to take the time to read as much as this. I think one of the most difficult things about having Migraines is that they are so difficult for other's to understand. Migraines are so often associated with headaches, and the media has done more than it's share of promoting that fact with ads such as those for Excedrin Migraine. I would be ecstatic if it were only that simple. You see, Migraines aren't a simple headache. They are a complex neurological disease. When I tell you that I am experiencing a Migraine, I am not telling that I have a simple headache and sometimes I don't know if you understand that.
Before I became chronic and only had Migraines four or five times a month, I was more able to accept that people might not understand exactly what a Migraine is; however, now that I have Migraines 24/7 and they have changed my life so dramatically, there is so much more that I want you to know. A pivotal moment stands out in my mind when I was sitting with one of you during one of my roughest moments and you said that what you were seeing then is what you thought of as a bad Migraine and that before then you hadn't really thought I had bad Migraines. I have had friends with periodic Migraines say they don't understand why I have had to go on Disability due to my migraines and can no longer work. Maybe I do myself a disservice by not telling you the amount of pain and other symptoms that I experience. I don't want to live out my disease in front of the world. I don't want to be one of those people who is always listing out their woes and ailments. I don't want to play the one-upmanship game where I try to convince you that my pain is worse than your pain. Yet, I think sometimes because I don't let you see the severity of my symptoms that you may see me as lazy, malingering or exaggerating.
One of you mentioned to me recently how depressing my home was because it is always so dark and that truly hurt me. I have always loved light - wanting every curtain open wide and couldn't understand why in the world anyone would want blackout curtains - and now because of extreme photophobia, I have no option but to live in a dimly lit world. You see, with my Migraines, light is extremely painful. It doesn't just cause pain. It also sets off extreme nausea - the type that you just pray that you could throw up so it would go away. It also causes my eyes to see lightening bolts and flashing lights, as well as to lose part of my vision.
I also feel like a burden because I so frequently have to ask you to not wear perfumes or scented products when you are with me. Sometimes, I see this rolling of eyes when I mention scents. This isn't a matter of personal taste or choice, it is because the scent itself also causes me to have excruciating pain, nausea, and problems with my vision.
My Migraines also cause horrible problems with hearing - in that my hearing is very over-sensitive. When I get in the car with you, and you are playing the radio and talking and I ask that the radio be turned off, it's not just because I'm persnickety or don't like your music, it's because Migraine disease makes me very overly sensitive to multiple stimuli and I want to enjoy our conversation. When I am in settings when there are multiple conversations, distracting noises, and lot of movement, it triggers something in my nervous system that puts me on overload and increases the severity of my Migraines. I know that when you whistle you are whistling out of joy, but for me, all I hear is a shrill piercing sound that goes straight into my head like an spear. I also know that it is frustrating to you when I can't sit in certain places in a restaurant because of where the music speakers are, and I know you find it embarrassing and inconvenient. However, if I sit with that multiple stimuli, there is no way I can even begin to enter into the fun and conversation at our table. There are times when the littlest of sounds - chirping birds or crickets - make me want to lose my mind. In addition to having an overly developed olfactory sense, I also have olfactory hallucinations which cause me to smell cigarette smoke, smoke/fire, and poop which isn't there.
One of you told me that it was ridiculous that I couldn't drive because of migraines and that you would just do it. I know it is a hardship for me to always be asking for rides, but I don't think you understand how Migraines cause me to totally lose my eyesight in the left eye (even though I've told you that) or that my reflexes are slowed down when I am having a Migraine. It takes a bit longer to process things and to react accordingly which is dangerous when one is driving. The thing I have hated the most about my Migraines is the giving up of my freedom and independence, but I could not live with myself if I hurt someone when I was driving impaired. I hate having to ask for rides and, as a result, I frequently don't do things that I want or need to do. Over the past few years of being homebound, I've struggled so much with not asking too much of you and as a result frequently save these requests for taking me to the doctor which I know is frequent, but let's face it, not fun. I also have to admit not understanding why those who are closest to me don't call me when they are going to the grocery or Target and ask me what you can get for me. I know you go on a regular basis, and I honestly just need some help and that seems so easy to me.
One of the things that hurts me the most is that I who have always considered one of my greatest strengths my dependability and my desire/and ability to be there for people and to do for them simply can't do that now like I would like. I know it is frustrating to plan things with me as I frequently have to cancel, so I think people have stopped asking me to do things and stopped including me. I also know that going places with me is difficult because I frequently can't last as long as everyone else because of my Migraines. I really don't mind sitting out in the car or the lobby waiting for you - I just want to be a part.
I feel so cut off from you all. I feel like the very nature of our relationships have changed. Some of our relationships have changed to ones that are more like care-takers than friends and others have changed to a distant and almost estranged one. I'm not blaming anyone as this has been a drastic change in all of our lives. However, I wish you could have a least a small idea of how deeply it hurts me; how much I miss the life I use to live. (I know it also hurts you to watch me hurt and there is a large part of me that wants to protect you from that.) All the things that use to give me validation and purpose in my life have been lost in so many ways. Whereas I use to receive accolades for what I did for a living and other things, I now rarely hear anything positive about myself. I cannot begin to describe to you the profound grief and even humiliation that I felt when I had to leave my job and go on Disability - it felt as if a very real part of my being was being ripped away from me. Some of you say how nice it must be to be at home all day and others wonder what I do all day. The bottom line is that I do whatever it takes to get through the day.
So, would you bear with me for a moment, and let me tell you what my experience with Migraine is? Let me begin by addressing what is probably the most recognized thing about Migraines and that is pain. However, I'm not talking about "common" pain - I am talking about boring, stabbing, throbbing, take my breath away pain. My pain does vary in a given day. At some moments my pain is relatively low and I would equate it to what I use to feel if I got a simple headache, but every day I also experience pain that is as if everything inside my brain is pressing against my skull trying to get out. There was an old technique called treplaning where they use to drill a hole in a Migrainer's head to try to let out the pressure, and in those moments of excruciating pain, I think of how great that would be if it worked. Sometimes I get lightening bolts or quick stabs like a knife in my head. I pull my hair and hit my head against the wall to try to relieve the pain; I pace; I can't sleep (which sometimes means that I don't wake up until 2:00 in the afternoon which I know some of you think makes me lazy); I fight tears with all my might as they'll only make it worse; and I fight overwhelming anxiety that something truly catastrophic is going on in my head. The only pain that comes close to describing the level of pain I experience in those times is when I had kidney stones that were so severe that they put me in the hospital for surgery. And even that, wasn't as bad because I knew it had a treatment and an end. Honestly another thing that made kidney stones more bearable is that people seem to understand the pain from kidney stones whereas they don't the pain of Migraines. I have had lumbar punctures and nerve blocks without even flinching as the pain is just nothing compared to that of Migraines.
I have always been told by doctors that I have a high tolerance to pain, but I know I appear to be overly reactive to pain to some of you. However, I'd like for you to consider what it would be like having an electrical storm going off in your nervous system every day.
In addition to the extreme problems with vision, light, sounds, scents, and multi-stimuli that I experience, there are also many other symptoms. My left side goes numb and tingly, making me wonder if I'm having a stroke (which is of higher possibility for those of us with Migrianes). I also experience aphasia, or the inability to say what I want to say. Sometimes I mix up my words and other times I can't even find the words. For one who use to travel and speak publicly on a regular basis and got great joy from it, this is so devastating. I also experience chronic ringing in my ears and vertigo - I am frequently off balance and have difficulty judging distances. Because I have such problems with light and eye sensitivity, I who use to read several books a week can no longer read; thereby losing one of my greatest passions.
I have much lower energy and endurance than I use to have prior to chronic Migraines. It is so much harder to do normal things. Bending over causes spikes in pain and dizziness. Getting hot does the same. Moving around too much also does the same. As a result, everyday tasks are so much more difficult if not impossible. I love and feel most comfortable in a clean and ultra organized home and now I sometimes don't want people in my home because it just looks so badly.
I forget things frequently because of my migraines and have to keep copious lists. I know I have frustrated you by forgetting things or repeating things to you and that you perceive it as nagging. Honestly, it's generally just that something is important to me, and I don't even remember that I've said to you before.
There are so many other things that go along with my Migraines - constipation/diarreha (not a thing I particularly like to discuss), a face that feels like its on fire, aching shoulders and neck, severe pain in my jaw and face, severe aching in my hand (which I totally don't understand), allodynia or sensitivity to touch that is so extreme that taking a shower can feel as if glass shards were hitting my head, congestion and sniffling as if I have a cold or sinus infection, a low grade fever, carbohydrate cravings, irritability that even I don't understand, red eyes that look as if I have conjunctivitis, fatigue and a number of other symptoms.
It seems like every time I turn around there is a new manifestation of my Migraines.
I've lost control of my life. I've lost my independence. I've lost my career. I've lost a number of relationships. I've lost a lot of my joy.
However, there are many things I can do. I can still love you and pray for you. I still want to spend time with you - just having fun and playing - even though it means that I have to make concessions for my Migraines. I still have passion for my career and can do things in that area if I had a schedule that would allow me to control my environment and arrange my timing around my symptoms. I love the Lord and desire to serve Him even though I find it difficult, if not impossible, to go to the physical church (and it broke my heart when a minister told me I couldn't join the church I loved and supported because I wasn't physically there). I am still me, and I want to be a part of your lives - I want to be a part of the joy and the fun. You won't see me focusing on my symptoms most of the time, and because of that, you may sometimes think that I am just malingering, but if I focus on my symptoms, I lose hope and I can't afford to do that . I cannot dwell on what is going wrong and that my doctors can find no preventative, abortive or even effective rescue medications for me. I have been told by my doctors everything from that I am in the 10% of chronic migraineurs that are extraordinarily difficult to treat, to there is nothing they can do for me, to I must be an alien (lol). I have spent thousands upon thousands of dollars searching for help for my Migraines. I have endured the belittling of doctors who do not understand Migraines and the pain and side effects of untold tests and treatments. Do you see how if I talked about that all the time that it would make me lose my will to live?
However, the most important thing in my life is the victory I know is possible through my Lord. The victory may not come in healing, but in how I choose to live this life I have, and I choose to live it with hope and small baby steps of success. However, in my heart of hearts, I have to admit that the one thing I want more than anything is for you, the people I love the most, to just understand. I don't want your pity - I want your support. I don't want to focus on my disease, but I want you to know why I live like I do. I have to control my activities, but I want to be a part of yours. Migraine is not just a headache. It is a disease that I have had for over 40 years now, but which has in the last five years irrevocably changed my life. With your help however, my life can be a little bit more normal, more enjoyable. Quite frankly, I need you to understand, to be by my side, to want to be with me and to understand what Migraines really are.
I am not here to accuse any of you, for I know that I am blessed with friends and family like that of which many only dream. I love each of you so dearly, but I want you to understand what I do and live with because of Migraines so that maybe my life can regain just a bit of normalcy.
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
My Dearest Friends and Family,
This is a very long post, but I don't think I've ever written anything that I want you to take the time to read as much as this. I think one of the most difficult things about having Migraines is that they are so difficult for other's to understand. Migraines are so often associated with headaches, and the media has done more than it's share of promoting that fact with ads such as those for Excedrin Migraine. I would be ecstatic if it were only that simple. You see, Migraines aren't a simple headache. They are a complex neurological disease. When I tell you that I am experiencing a Migraine, I am not telling that I have a simple headache and sometimes I don't know if you understand that.
Before I became chronic and only had Migraines four or five times a month, I was more able to accept that people might not understand exactly what a Migraine is; however, now that I have Migraines 24/7 and they have changed my life so dramatically, there is so much more that I want you to know. A pivotal moment stands out in my mind when I was sitting with one of you during one of my roughest moments and you said that what you were seeing then is what you thought of as a bad Migraine and that before then you hadn't really thought I had bad Migraines. I have had friends with periodic Migraines say they don't understand why I have had to go on Disability due to my migraines and can no longer work. Maybe I do myself a disservice by not telling you the amount of pain and other symptoms that I experience. I don't want to live out my disease in front of the world. I don't want to be one of those people who is always listing out their woes and ailments. I don't want to play the one-upmanship game where I try to convince you that my pain is worse than your pain. Yet, I think sometimes because I don't let you see the severity of my symptoms that you may see me as lazy, malingering or exaggerating.
One of you mentioned to me recently how depressing my home was because it is always so dark and that truly hurt me. I have always loved light - wanting every curtain open wide and couldn't understand why in the world anyone would want blackout curtains - and now because of extreme photophobia, I have no option but to live in a dimly lit world. You see, with my Migraines, light is extremely painful. It doesn't just cause pain. It also sets off extreme nausea - the type that you just pray that you could throw up so it would go away. It also causes my eyes to see lightening bolts and flashing lights, as well as to lose part of my vision.
I also feel like a burden because I so frequently have to ask you to not wear perfumes or scented products when you are with me. Sometimes, I see this rolling of eyes when I mention scents. This isn't a matter of personal taste or choice, it is because the scent itself also causes me to have excruciating pain, nausea, and problems with my vision.
My Migraines also cause horrible problems with hearing - in that my hearing is very over-sensitive. When I get in the car with you, and you are playing the radio and talking and I ask that the radio be turned off, it's not just because I'm persnickety or don't like your music, it's because Migraine disease makes me very overly sensitive to multiple stimuli and I want to enjoy our conversation. When I am in settings when there are multiple conversations, distracting noises, and lot of movement, it triggers something in my nervous system that puts me on overload and increases the severity of my Migraines. I know that when you whistle you are whistling out of joy, but for me, all I hear is a shrill piercing sound that goes straight into my head like an spear. I also know that it is frustrating to you when I can't sit in certain places in a restaurant because of where the music speakers are, and I know you find it embarrassing and inconvenient. However, if I sit with that multiple stimuli, there is no way I can even begin to enter into the fun and conversation at our table. There are times when the littlest of sounds - chirping birds or crickets - make me want to lose my mind. In addition to having an overly developed olfactory sense, I also have olfactory hallucinations which cause me to smell cigarette smoke, smoke/fire, and poop which isn't there.
One of you told me that it was ridiculous that I couldn't drive because of migraines and that you would just do it. I know it is a hardship for me to always be asking for rides, but I don't think you understand how Migraines cause me to totally lose my eyesight in the left eye (even though I've told you that) or that my reflexes are slowed down when I am having a Migraine. It takes a bit longer to process things and to react accordingly which is dangerous when one is driving. The thing I have hated the most about my Migraines is the giving up of my freedom and independence, but I could not live with myself if I hurt someone when I was driving impaired. I hate having to ask for rides and, as a result, I frequently don't do things that I want or need to do. Over the past few years of being homebound, I've struggled so much with not asking too much of you and as a result frequently save these requests for taking me to the doctor which I know is frequent, but let's face it, not fun. I also have to admit not understanding why those who are closest to me don't call me when they are going to the grocery or Target and ask me what you can get for me. I know you go on a regular basis, and I honestly just need some help and that seems so easy to me.
One of the things that hurts me the most is that I who have always considered one of my greatest strengths my dependability and my desire/and ability to be there for people and to do for them simply can't do that now like I would like. I know it is frustrating to plan things with me as I frequently have to cancel, so I think people have stopped asking me to do things and stopped including me. I also know that going places with me is difficult because I frequently can't last as long as everyone else because of my Migraines. I really don't mind sitting out in the car or the lobby waiting for you - I just want to be a part.
I feel so cut off from you all. I feel like the very nature of our relationships have changed. Some of our relationships have changed to ones that are more like care-takers than friends and others have changed to a distant and almost estranged one. I'm not blaming anyone as this has been a drastic change in all of our lives. However, I wish you could have a least a small idea of how deeply it hurts me; how much I miss the life I use to live. (I know it also hurts you to watch me hurt and there is a large part of me that wants to protect you from that.) All the things that use to give me validation and purpose in my life have been lost in so many ways. Whereas I use to receive accolades for what I did for a living and other things, I now rarely hear anything positive about myself. I cannot begin to describe to you the profound grief and even humiliation that I felt when I had to leave my job and go on Disability - it felt as if a very real part of my being was being ripped away from me. Some of you say how nice it must be to be at home all day and others wonder what I do all day. The bottom line is that I do whatever it takes to get through the day.
So, would you bear with me for a moment, and let me tell you what my experience with Migraine is? Let me begin by addressing what is probably the most recognized thing about Migraines and that is pain. However, I'm not talking about "common" pain - I am talking about boring, stabbing, throbbing, take my breath away pain. My pain does vary in a given day. At some moments my pain is relatively low and I would equate it to what I use to feel if I got a simple headache, but every day I also experience pain that is as if everything inside my brain is pressing against my skull trying to get out. There was an old technique called treplaning where they use to drill a hole in a Migrainer's head to try to let out the pressure, and in those moments of excruciating pain, I think of how great that would be if it worked. Sometimes I get lightening bolts or quick stabs like a knife in my head. I pull my hair and hit my head against the wall to try to relieve the pain; I pace; I can't sleep (which sometimes means that I don't wake up until 2:00 in the afternoon which I know some of you think makes me lazy); I fight tears with all my might as they'll only make it worse; and I fight overwhelming anxiety that something truly catastrophic is going on in my head. The only pain that comes close to describing the level of pain I experience in those times is when I had kidney stones that were so severe that they put me in the hospital for surgery. And even that, wasn't as bad because I knew it had a treatment and an end. Honestly another thing that made kidney stones more bearable is that people seem to understand the pain from kidney stones whereas they don't the pain of Migraines. I have had lumbar punctures and nerve blocks without even flinching as the pain is just nothing compared to that of Migraines.
I have always been told by doctors that I have a high tolerance to pain, but I know I appear to be overly reactive to pain to some of you. However, I'd like for you to consider what it would be like having an electrical storm going off in your nervous system every day.
In addition to the extreme problems with vision, light, sounds, scents, and multi-stimuli that I experience, there are also many other symptoms. My left side goes numb and tingly, making me wonder if I'm having a stroke (which is of higher possibility for those of us with Migrianes). I also experience aphasia, or the inability to say what I want to say. Sometimes I mix up my words and other times I can't even find the words. For one who use to travel and speak publicly on a regular basis and got great joy from it, this is so devastating. I also experience chronic ringing in my ears and vertigo - I am frequently off balance and have difficulty judging distances. Because I have such problems with light and eye sensitivity, I who use to read several books a week can no longer read; thereby losing one of my greatest passions.
I have much lower energy and endurance than I use to have prior to chronic Migraines. It is so much harder to do normal things. Bending over causes spikes in pain and dizziness. Getting hot does the same. Moving around too much also does the same. As a result, everyday tasks are so much more difficult if not impossible. I love and feel most comfortable in a clean and ultra organized home and now I sometimes don't want people in my home because it just looks so badly.
I forget things frequently because of my migraines and have to keep copious lists. I know I have frustrated you by forgetting things or repeating things to you and that you perceive it as nagging. Honestly, it's generally just that something is important to me, and I don't even remember that I've said to you before.
There are so many other things that go along with my Migraines - constipation/diarreha (not a thing I particularly like to discuss), a face that feels like its on fire, aching shoulders and neck, severe pain in my jaw and face, severe aching in my hand (which I totally don't understand), allodynia or sensitivity to touch that is so extreme that taking a shower can feel as if glass shards were hitting my head, congestion and sniffling as if I have a cold or sinus infection, a low grade fever, carbohydrate cravings, irritability that even I don't understand, red eyes that look as if I have conjunctivitis, fatigue and a number of other symptoms.
It seems like every time I turn around there is a new manifestation of my Migraines.
I've lost control of my life. I've lost my independence. I've lost my career. I've lost a number of relationships. I've lost a lot of my joy.
However, there are many things I can do. I can still love you and pray for you. I still want to spend time with you - just having fun and playing - even though it means that I have to make concessions for my Migraines. I still have passion for my career and can do things in that area if I had a schedule that would allow me to control my environment and arrange my timing around my symptoms. I love the Lord and desire to serve Him even though I find it difficult, if not impossible, to go to the physical church (and it broke my heart when a minister told me I couldn't join the church I loved and supported because I wasn't physically there). I am still me, and I want to be a part of your lives - I want to be a part of the joy and the fun. You won't see me focusing on my symptoms most of the time, and because of that, you may sometimes think that I am just malingering, but if I focus on my symptoms, I lose hope and I can't afford to do that . I cannot dwell on what is going wrong and that my doctors can find no preventative, abortive or even effective rescue medications for me. I have been told by my doctors everything from that I am in the 10% of chronic migraineurs that are extraordinarily difficult to treat, to there is nothing they can do for me, to I must be an alien (lol). I have spent thousands upon thousands of dollars searching for help for my Migraines. I have endured the belittling of doctors who do not understand Migraines and the pain and side effects of untold tests and treatments. Do you see how if I talked about that all the time that it would make me lose my will to live?
However, the most important thing in my life is the victory I know is possible through my Lord. The victory may not come in healing, but in how I choose to live this life I have, and I choose to live it with hope and small baby steps of success. However, in my heart of hearts, I have to admit that the one thing I want more than anything is for you, the people I love the most, to just understand. I don't want your pity - I want your support. I don't want to focus on my disease, but I want you to know why I live like I do. I have to control my activities, but I want to be a part of yours. Migraine is not just a headache. It is a disease that I have had for over 40 years now, but which has in the last five years irrevocably changed my life. With your help however, my life can be a little bit more normal, more enjoyable. Quite frankly, I need you to understand, to be by my side, to want to be with me and to understand what Migraines really are.
I am not here to accuse any of you, for I know that I am blessed with friends and family like that of which many only dream. I love each of you so dearly, but I want you to understand what I do and live with because of Migraines so that maybe my life can regain just a bit of normalcy.
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
Wednesday, June 6, 2012
Migraine Awareness Month #5: Do That to Me One More Time
Unfortunately I am a day late with Migraine Awareness Month Blogging Challenge #5 - What comfort measure do you find helps you enough during a migraine that you go back to it again and again, and how do you use it?
For the last week I have been besieged with one of the worst migraines I have had in quite a while (and that's saying something when you have 24/7 migraines that generally hover around a five on the pain scale). I have tried so hard to keep up with the blogging challenges in spite of this and find it quite ironic that the one I missed due to pain was the one on comfort measures.
So here goes, as they say "a day late and a dollar shy (or in my case a brain cell shy!):
For the last week I have been besieged with one of the worst migraines I have had in quite a while (and that's saying something when you have 24/7 migraines that generally hover around a five on the pain scale). I have tried so hard to keep up with the blogging challenges in spite of this and find it quite ironic that the one I missed due to pain was the one on comfort measures.
So here goes, as they say "a day late and a dollar shy (or in my case a brain cell shy!):
Yes, I have 37 ice packs and heating wraps, not to count the ever present box of Migraine BeKool Pads! When I am suffering a bad migraine, I tend to look like some kind of mummy who has literally wrapped my head and neck in all sorts of therapeutic wraps!
In addition to the use of ice for my head and heat for my neck and shoulders, my primary comfort measures are:
- Texting friends to ask them to pray for me
- Going to Prayers for Migraineurs Facebook page (We'd love to have you join us, but you'll have to request to join since we are a closed group. Click here)
- Cuddling up with Marlie and Milo, my precious fur babies
- Wrapping up in my favorite quilt (with the air conditioner on high)
- Listening to quiet and inspiring songs which help me to focus on the hope I have in the Lord
- Drinking a coke (true confession!)
- ZOFRAN!
Oh, and did I mention ice packs??
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
Subscribe to:
Posts (Atom)