Dear 2012

Dear 2012,

I have been trying to think of the Scripture that best sums up this year.  While I am tempted to use John 11:35 ("Jesus Wept") because of how frequently I wept over Migraines, struggles, loss and the other difficult realities of life, I am convinced that the better verse to sum up my year is found in Romans 5: 1-4 (The Message)

     "We throw open our doors to God and discover at the same moment that he has already thrown open his door to us. We find ourselves standing where we always hoped we might stand—out in the wide open spaces of God’s grace and glory, standing tall and shouting our praise.

     We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!"

Yes, while at first glance, 2012 appears to be one that was filled up with pain, I can confidently say that when I look at my year in total that it is filled with hope and joy.  Any pain that I experienced during this year, God Himself has been able to use to produce growth in me.  As the NIV says, "suffering produce(d) perseverance, perseverance, character; and character, hope. And Hope never puts us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."

Where you would have like to have seen me write that suffering produced pain, and pain produced anxiety; and anxiety, despair, instead I can confidently say that I am grateful for each experience which has been allowed me during 2012.  It is those experiences and my ability to come through them which have taught me that there is always hope and that even the hardest things that occur in my life can bring great good.

Yes, I had unmanageable Migraines, but because of them, I have made some life long friends who I would have never met otherwise.  Because of them, I have a doctor who I trust and value.  Because of them, I have had to travel to see that doctor and have, as a result, gotten to know my dear first cousin and his family.  Because of the trials of this year, I have had the good fortune of learning that joy is something that is not dependent on my circumstances but upon my relationship with God Himself.  Because of my Migraines, I have had time to listen to beautiful music, read good books, consider the wonder of friendship, to bathe in the blessing of family, and to try to serve others who are suffering.  

Because of the trials of this year, I have re-realized the unimaginable treasure of people I love and the time I get to spend with them.  Because of this year, I know that every day is a gift. Because of this year, I can face 2013 without fear because I have seen the proof of the good that can come out of difficulty and pain.

So, 2012, thank you.  Thank you for each day and each experience.  Thank you for bringing me to 2013 where I expect to continue to fill up that container mentioned in Romans 5 with even more blessings, more hope, more victory and more certainty that God does have a good plan for me.  Will there be pain in 2013?  Yes, it's inevitable, and I don't look forward to it.  I cannot minimize the severity of some of the physical and emotional pain that I am bound to experience this year any more than I can minimize that of the past year.  

However, I survived.  

And I will continue to survive,

 and survival will be laced with gratitude and hope 

for I know that even in the most difficult circumstances,

 good can and will grow. I stand in alert expectancy - seeking what God has to reveal to me during this year.  And for that, I will give all glory and praise to Him!

Why My Dogs Make All the Difference!

The topic of this month's Migraine and Headache Blog Carnival is "Pets as Therapy: How our pets help us cope with migraine and headache disorders."  Ironically, I missed the yesterday's submission deadline because I was exhausted after spending the day at a continuing education seminar on "Animal Assisted Therapeutic Interventions."  I have long been a believer in the therapeutic properties of pets, and Marlie, my standard poodle, use to go to work to "help" me with my Play Therapy practice every day before I went on disability.  There were many days when I believe she provided much more therapeutic benefit to my clients than I did!  Hanging in my office was a sign that read:

Marlie and Milo are essential to my physical and psychological well-being.  They are my constant companions who are ever sensitive to how I feel.  They are content to lie with me when I feel badly and to entertain me when I am bored.  They cause me to laugh, to feel loved unconditionally, to feel less lonely and also meet my need for physical touch.  They are often the reason I get up in the morning because I know I need to feed and care for them.  When I am at my worst, they cuddle with me, providing me with warmth and love. 

But why take my word for it when there is a plethora of research which supports the fact that pets are not only great companions but are also psychologically and physiologically beneficial whether you suffer from a chronic disease or not.  My friend Rise Van Fleet has a website entitled the Playful Pooch which focuses on the benefits of animal assisted play therapy.  Press the word DOG to go to her site.  Some of the results of Dr. Van Fleet's research has indicated the following conclusions about using dogs in therapy with children; however, her conclusions and those of other researchers show that this information can also be extrapolated to adults. (To read her complete article, please go HERE.)  

1. "Animals help (people) overcome their fears and reduce their defenses."

2. "They help (people) feel accepted. The animals show affection, interest and attention that (people) need.... They provide comfort."

3. "They give (people) experiences of joy, playfulness and fun.  They invite laughter and release."

4. "They empower people and build their confidence."

5. They provide sensory benefits, including touch/tactile experiences and physical affection that are not (always available or possible).

6. "They help (people) relax and calm down, reducing some of the anxieties.  They provide comfort."

Other ways in which pets benefit our health include:

1. Pets are natural mood enhancers and can actually help with the production of Serotonin and Oxytocin.  Serotonin is a neurotransmitter and hormone which plays a significant role in mood regulation and is also associated with sleep, learning, Migraine and anxiety.  Oxytocin, also a hormone, is strongly tied to trust.  Medical research shows that Oxytocin is instrumental in human bonding and that Oxytocin levels go up when one is hugged or kissed (or pets their pet).

2. Petting an animal lowers blood pressure.

3. Pet owners have a lower risk of dying from heart disease.

4. Pets aid in increased mobility and activity because of our responsibility and desire to feed them, care for them and walk them.

5. Pets decrease the sense of isolation or being alone.

6. Petting an animal or lying next to it increases endorphins.  Endorphins are hormones which can increase a sense of calm, satisfaction and joy and can actually reduce the sensation of pain.  Additionally, cuddling up with a pet provides warmth which can be of benefit for aching body parts.

7. Pets increase our perceived ability to cope. (Siegel, 1999, Carmack, 1999)

8. Pets aid in lowering triglyceride and cholesterol levels. (Anderson, 1992)

9. Pets fulfill many of the same support functions as humans. (Melson, 1998)

After reading this, how can you NOT afford to have a warm, fuzzy friend!?!

Positive Psychology

As many of you are aware, I am a mental health therapist. I can't tell you how many times, I have said "doctor, heal yourself!" as I walk through my current storm of chronic pain.  You know as well as I do that it's just not that easy, and many of us have a choir of people who are ready to tell us what we need to do in order to feel better.  

However, as I was reflecting on this, I thought of one of my favorite models of psychology.  It is called Positive Psychology.  Positive Psychology, as a branch of psychology, wasn't formalized until 1988 so it is fairly recent.  It is based on the scientific study of individual traits that allow people to thrive and carry on in the midst of life's storms.  It is based on the belief that people want "to lead meaningful and fulfilling lives, to cultivate what is best within themselves and to enhance their experiences of love, work, and play." (University of Pennsylvania)  I would like to also add that it can enhance our experience with pain management.

Positive Psychology focuses on happiness and contentment in the present and hope for the future.  It specifically addresses good ways to handle disappointment, stress and those inevitable storms in life.

To a large degree, Positive Psychology is based on the premise that how we think shapes how we feel.  This is not to suggest that if we engage in some denial of our pain that it will cease to exist.  Rather, it offers coping mechanisms that are intrinsic to most individuals.  For example, have you ever noticed that if you focus on your blessings, things that make you happy, and things that are humorous, that your experience of pain is not as all-consuming?  This doesn't mean that your pain is any less.  It is just a shift of focus. 

I know that when I watch my silly puppy throwing his toys in the air, spend time with someone I love, watch a funny movie, have a belly laugh with someone over something ridiculous that I've done (you know who you are and you better not be talking), and spend time in prayer praising God rather than asking Him for things that something shifts inside of me.  The pain is still very real, but I am able to move my attention from looking at it so intensely that it cripples me to allowing myself to enjoy life in spite of the pain.  It doesn't make me any less physically disabled but it does help me to become less emotionally disabled.

If I focus on my pain, it drives me mad.  I become anxious; I become frightened; I become hopeless.  And I will confess that I do this plenty of times and that I then go into the "oh my goodness, what can I do" panic mode!  Having gone back to think about what I know about Positive Psychology has reminded me that while I might not have a choice over what my body does, I do have a choice over where my mind dwells.  It's not an easy or simplistic thing to do, but for me, it makes a huge difference.
   
I'm going to be focusing on Positive Psychology for the next few blog entries and how one can incorporate it into their life.  Before I do, however, let me stress that it is not meant to diminish the reality of both physical and emotional suffering.  These are both physiological functions, and thought alone is not going to "cure" anything.  Positive Psychology, in my opinion, is just another tool in my Migraine toolkit.  It is not a substitution for medical treatment, for medication or for honesty about what is going on in one's life.  I hope you will join me in exploring Positive Psychology.

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!

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."

Say What?!

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!

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.

Just Shoot Me Now!

Today's prompt for Migraine Awareness Month is Just Shoot Me Now!  What's your worst Migraine trigger?  Can you avoid it?  How do you handle it?

What's my worst trigger?  Eeny Meenie Miney Moe!  If you are a migraineur, you already understand my dilemma! So many triggers, so few solutions!  

All three of these - scents, lights and weather changes are a guaranteed invitation to a humdinger of a Migraine.  Lights I can handle by getting away or wearing sunglasses.  Weather changes are inevitable, and I can just stay at home to suffer in peace.  

Scents, however, are a totally different story!  I know I appear to be a manic phobic when it comes to scents! God bless the perfume lady who dares to come near me to even offer me a whiff as I stare at her horrified and run from her as a frightened animal might.  While most people don't have to think twice about going out in public, every setting has potential scent triggers.  How do you explain to people that you need them to be scent free when they are with you or that you can't stay in a home or store with them without it appearing to be a personal affront?  Scents that literally strike terror in my head are 

I know it is hard for most people to understand, but these scents, among others, cause nausea and an instant stabbing sensation in my left eye.  At that point, I know I am headed for one of my most intense migraines and that there is no turning back.  The amount of time to which I am exposed to it does not matter.  The bottom line is

Scents = Migraine


and until a better treatment protocol is developed for me, 
there's nothing I can do about it!

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by  www.FightingHeadacheDisorders.com.

Tea for Two (or Three)

Today's prompt for the Migraine Awareness Month Challenge is "If you could invite someone to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why?

As I have been thinking about today's prompt, several ideas have been going through my mind.  I'd love to have tea with a fellow migraineur's parents so that I might help them understand what their daughter is experiencing, or I might have tea with  a member of my own family who seems not to really understand the impact migraines has on my life.  However, as I continued to think about it, I decided I wanted to invite someone who could really make a difference in the life of migraineurs in general if they were to become passionate about the issues involved.

I decided that a philanthropist was who I would like to have home for tea.  This took a bit of research (as I don't just have a list of philanthropists on my contact list).  As I was reading about different philanthropists, a quote caught my eye.  This philanthropist was quoted as saying that his primary purpose in determining whether to fund something was if it was something no one else was doing.  This was perfect!  I decided to invite Eli and Edythe Broad (pronounced like road) to have tea with me.

(The Broads developed the Broad Foundation whose mission is to serve the public good through education, science and the arts.)  

After debating about whether or not, they should see my house has it "really" is - kind of messy and very dark, I decided I would call in a maid service and wear sunglasses so my guests would be comfortable.  Over a bit of tea and a piece of Sugaree cake, I'd share some migraine statistics with them that I gathered from the Migraine Research Foundation.  I'd be sure to include these facts:

1.  Migraine ranks in the top twenty of the world's most disabling illnesses.
2. 37 million people suffer from Migraine disease, and 14 million experience chronic daily headache.
3. Migraine causes more lost years of healthy life in the US annually than MS,  epilepsy, ovarian cancer, and tuberculosis combined and has been identified by the World Health Organization has having the capacity to be as disabling as quadriplegia.
4. American employers lose more than $13 billion each year as a result of 113 million lost work days due to migraine.
5.  Migraine sufferers, like those who suffer from other chronic illnesses, face the consequences of high costs of medical services, too little support, and limited access to quality care.
6. At present, NIH funding for migraine research is $15 million - less than 0.03% of the annual NIH research budget.

After having tea and having done my best to have appealed to the Broad's sense of business and desire to be involved with something that no one else is doing, I would then share with them how Migraine disease has impacted my life.  I'd be sure that they understood that Migraine is more than a headache and that it is a neurological disease which has dramatically changed my life in regards to my career, finances, quality of life, social involvement, community involvement, and family involvement.  I'd have a friend with me who would be able to tell them the 180 degree change in my life since my migraines have become chronic.  In addition to how migraine has  impacted my life, I would tell them stories of friends who have lost their will to live because of dealing with chronic pain and being unsuccessful in finding treatment.

Then because I know any good business person wants to know why they are being asked to be involved, I'd lay out my plan.  

1. I'd like for them to establish a scholarship fund for individuals who cannot afford treatment or who cannot afford the expenses associated with going to a migraine specialist (travel and housing, as well as comprehensive treatment).
2. I'd like for them to establish an annual scholarship fund in a major medical school of each of the fifty states which would support a medical student from first year through residency and specialized training in migraines since there are only 290 certified headache specialists in the United States.
3. I'd ask them to develop a state of the art Migraine facility in each of the four time zones so that everyone has specialized medial facility within at least a days driving distance.  Each of these state of the art facilities should have both in-patient and out-patient services which focus on the whole person and should have Migraine friendly living arrangements nearby, as well as provide transportation since many migraineurs are unable to drive.  They should also have branches which are specifically dedicated to pediatric Migraine disease, Veterans with headache disorders, and to the unique needs of hard to treat chronic Migraineurs. 
4. I'd ask them to develop medical continuing education that focuses on Migraine disease from both a medical and psychosocial point of view.
5. I'd ask that they support research towards developing specialized Migraine medications (since there is no medication that has been developed specifically for Migraines) and ask that they have a research effort to specifically look at Migraine treatment for chronic Migraineurs who are difficult to treat with standard protocols.
6. Last, I would ask that they sit with their scholarship review committee which is comprised of business men, scientists, and politicians to develop a systematic approach for raising awareness about Migraine disease.

I'd then like to arrange a dinner with them and other migraineurs and leaders in the Migraine community, as well as some of the best Migraine doctors in the United States, to answer any further questions that they have.  My desire would be that they would catch the vision of what needs to be done for Migraine disease and be inspired to work to make millions of people's dreams come true and help them once again become active, productive, involved citizens who can pay forward all that they have gained through the work and vision of the Broads.

One can dream, can't they?!


National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by  www.FightingHeadacheDisorders.com.

Migraine Awareness Month: Share the story of your first Migraine

I have had headaches for as long as I can remember.  My mother use to call them "sick headaches" and would lead me to my bed in a darkened room where she would put a cold washcloth on my head.  For years, my headaches were attributed to sinuses or my "sensitive" personality.  My mother also experienced sick headaches, but I never remember the word "migraine" being used in relationship to them.  

There are two childhood experiences regarding migraines which stand out in my mind.  When I was in about the third grade, a much beloved aunt came to visit from out of town.  I was excited about all the fun things that we would be able to do with her.  However, apart from my excitement over her visit, the one thing I vividly remember about it was standing in a room with her and my mom and feeling so sick that I thought I was going to throw up or pass out from my headache.  That afternoon mom took me to the doctor as I watched my sister and brother walk with my aunt downtown to get some ice cream.  (Oh, the funny things we remember as children!) Yet, this was the first of many, many things I recall missing as a result of my migraines.)

Fast forward to the summer before tenth grade when I went with my church group to Montreat, North Carolina. I recall having a constant throbbing headache for the majority of the trip.  When my friends asked what was going on, I remember telling them that I had a "mack truck sitting on my brain."  Shortly after returning, a friend was apparently so worried that she called my mom to tell her about my headaches.  

At about this same time, I had an appointment with my optometrist.  My recent bout with severe headaches was mentioned.  Within twenty minutes into the appointment, he looked at my mother and I (a sixteen year old) and told us that he thought I had a brain tumor.  The next thing I knew I was in the hospital having the first of a myriad of tests run to find out why I was having such horrible headaches.  I clearly remember how grim my family and friends were at this time.  In looking back at letters I received, it was clear that many of them felt that it was inevitable that I did indeed have a brain tumor due to the intensity of my headaches as well as some suspicious findings in my eye exam and my MRI.

Everyone let go of a great sigh of relief when the neurologist determined that it was "only" migraines that I was experiencing.  "Only migraines" have followed me for over 45 years, dramatically changing the way I have been able to interact with life and with people.  Although I have many wonderful childhood memories, one of the ones which I can see most clearly in my mind's eye is of me lying in the middle of my bed with a cool wash cloth across my eyes in a dark room too frightened to move because of what it might do to my pain level.  

As I mentioned, I was frequently regarded as an overly sensitive child.  I was overly sensitive to smells, frequently roaming the house with my mother (who had the same problem) looking for the source of the smell of natural gas or fire.  I also complained to my parents about how loud the television was in their bedroom.  They had a hard time believing that I could actually hear a TV that they thought was set so low until I could recite the dialogue from a show they were watching.  My head was extremely sensitive to touch at times, and I disliked having my hair brushed as a result.  I was frequently nauseous without any vomiting (another indication that I was making this up).  I would also have periods when I was ultra sensitive to any movements, light or sounds around me and would become easily irritated.

My greatest hope in writing this is that no child will be viewed as having "only" headaches or migraines.  This is a serious life changing disease.  Although it rarely leads to death, it frequently makes the one who has them wish that death was an option.  I can remember being treated by doctors as if I was exaggerating, malingering or emotionally unstable.  At times, I wondered if they were right - if there was something wrong with my character or my faith because I could not control these horrible headaches and the accompanying symptoms.   Although my parents were generally supportive and loving, there were times when they also wondered if my "headaches" and their symptoms might not be the result of my being "too sensitive."

Statistics indicate that 9 percent of American children between the ages of five and 13 experience migraines (Migraine.com). If you believe that your child might have migraines, please seek the help of a migraine specialist.  There are medications and treatments that can benefit children.  Research indicates that the more frequently one has a migraine the more the brain "learns" the pattern of migraines.  Untreated migraines may over time lead to more frequent and even chronic migraines.  

If you would like more information about children and migraines, please check out these links.  Migraine Research Foundation  Migraines in Children are Frequently Overlooked

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by  www.FightingHeadacheDisorders.com.

When Life Sucks Make Suckers!

Let me begin by saying that I really don't like the term "life sucks."  However, since it is used all the time, I thought I'd give you my take on it.  In this case, my purple sucker and ribbon represent migraine awareness and the reason migraine awareness is important to me.  I'd love to say that I have some grand aspirations of changing the healthcare system and the ways doctors interact with patients, as well as getting money and attention for migraine disease research.  These things are important to me and I really do wish I could do those things, but when I think about why I spend time writing about migraines and posting information about migraines, I find that my purpose is often much different.  

For me, awareness is about giving people hope - letting people who suffer from migraines and other headache disorders know that they don't have to live in despair or travel their road alone.  Yes, having migraines does suck, but who doesn't have something in their life that sucks? I have a strong belief that when we come together as a community of migraineurs and advocates that we can literally change that "suckiness"  into something can have positive ramifications in our lives, in the world and in the future.

Like a sucker which is sweet and long lasting, my involvement in migraine awareness has allowed me to get to know some people who I consider to be dear, life long friends.  Their battle with migraine disease hurts me to watch, but they are my cheerleaders. I gain inspiration from them to keep on going in the face of pain, loneliness, and frustration.   This has been life-changing for me and has been the result of other migraine advocates who have introduced me to the migraine community and have cared enough to reach out to me. Without this influence in my life five years ago when I first became chronic, I honestly don't know how I would have survived.  

Every time I post something about migraines on Facebook or in my blog, it is with the hope that someone who feels as lost as I did five years ago will see that they are not alone.  It is my desire that in building these relationships that individuals will become empowered to find the best medical care they can, but also that they will see hope in the midst of a very, very difficult situation.  

I don't post about migraines because I feel like the world owes me something or that they should understand me.  I write about it because I find personal strength in knowing that every time something is written about migraines in a positive, hopeful and educational manner that somebody's life might be touched and changed for the better.  That person may be a migraine sufferer, a friend, a family member or a member of the medical community.  Regardless, I kind of see migraine advocacy as a rainbow of purple where each link in that rainbow is the influence and caring one person gives to the next.  By joining forces, we become that purple rainbow that can be see by others - migraineurs and non-migraineurs alike.  They see it and hopefully gain strength, inspiration and hope from it.  Hopefully, they look upon it and are inspired to make a difference, to learn more, and to add their voice to the choir of migraine advocates.

There are some people who are destined to make a grand difference in the world and the system regarding migraines, but I believe we as migraineurs all have the ability to become advocates and make a difference in someone's life.  My personal philosophy is that we do this best through support, encouragement and education of the public that de-victimizes us and gives us power over our own healthcare, our lives and our emotions.  That positive approach seems to be contagious to me.  It draws others into it and makes them want to be a part of it, and they then become beacons of hope who pass it on to someone else.  

Basically, my goal as an advocate is to become a candy maker - a sucker expert extraordinare!  I hope that my advocacy might in some way make at least one person's life a little bit sweeter,  a little bit more hopeful, and a little bit more positive.