Sometimes in life you have to get a little lost before you are truly able to find your way.

Archive for the ‘Motivation’ Category

Migraines, Meds and Making Connections

Migraine Support Group cover photo - courtesy of the U.S. Pain Foundation

Migraine Support Group cover photo – courtesy of the U.S. Pain Foundation

I recently joined a Facebook support group for migraine sufferers. It has been an experience that leaves me with such a variety of emotions. Sadness. Empathy. Frustration. Compassion. Fury. Hope. I read the posts and it is as though I am reading something that younger versions of me might have said. Versions of me in the early stages, with ill-equipped doctors doling out terrible advice and the wrong meds. Giving up on me. Over and over. Versions of me that wondered if anyone else on the planet could possibly be experiencing what I was going through. Non-stop pain. Pain that was crippling. Pain that made me wish I was dead, or at least unconscious until someone invented a cure. Isolation. Judgement. No one could SEE my migraine so many people dismissed it, underestimated it, assumed I was faking or being dramatic. Loss of wages for when I couldn’t get to or stay at work. Loss of income when I was repeatedly let go for absenteeism. Accusation of being a drug-seeker when I wound up in the emergency room. The inability of so many ER staff to distinguish between seeking drugs, and seeking comfort, progress, a few moments, at least, with less pain. Versions of me that could sense when yet another doctor was about to give up on me or simply say that my only option was pain management with narcotics. Versions of me ready to just give up all together.

More than 14 years of living with this condition has left me wiser, more cautious, patient, more discriminating about who I allow on my treatment team, and eager to get the word out that if you are dealing with migraines, or any other chronic condition – know this – YOU ARE NOT ALONE. The first time I actually believed that was when I was being treated in-patient at the Michigan Headpain and Neurological Institute. A team of doctors from various disciplines led by Dr. Joel Saper, world-renowned for his work in migraine treatment, fully dedicated to 22 patients. We did 3-day trials of intense IV protocols. Some helped. Some hurt. Some did nothing…or so it seemed. Some people had miraculous success. Others, like me, waited for weeks with no apparent improvement. We went to classes on the physiology of pain, stress reduction, coping mechanisms, art therapy, yoga. We saw psychologists. But out of all of that, one of the most amazing and life-altering parts of this entire process was the 21 other people who actually got what I was going through. REALLY got it. Not “I can only imagine” got it or “I went through something similar” got it, they actually, really, absolutely got it. That was as powerful as the medicine. It was miraculous. Life-altering. Those relationships are still some of the most important in my life.

Dr. Joel Saper, photo courtesy of MHNI

Dr. Joel Saper, photo courtesy of MHNI

My time at MHNI was also my first experience with a real headache clinic. The results were profound. If you combined all of the improvement from the previous 5 1/2 years, ridiculous number of medications and treatments and countless doctors, it was only a fraction of the relief I got from the protocol the MHNI doctors found for me.

So why am I still a chronic migraine sufferer? Pretty common question. The thing about migraine and all of the other headache disorders is that you are dealing with the most complex thing on the planet – the human brain. Brain chemistry changes CONSTANTLY. So to think that finding something that works for the moment is the same as finding a cure is just naive. What works now will hopefully work for a while. But it is unlikely that it will work indefinitely. For me, it was about two years before the efficacy of my drug protocol started to nose-dive. But when it did, it didn’t take long. It was excruciating. Both physically and emotionally. I just knew that I couldn’t go back to that level of pain every day again. And certainly not with the hours I was working. I was right. Something had to give. I was battling my HMO to allow me to go back to MHNI even though they were out of network while still trying to keep things going at home and at work. NOT sustainable. I started missing work. A lot of work. In fact, I used up all of my FMLA days. I had to take each day I missed without pay. FINALLY I got the go-ahead to go back to MHNI. I went on short-term disability, figured I’d be there for 3-4 weeks and would need another 3-4 to recover before coming back.

If only it were that simple. My second month as a patient at MHNI didn’t yield the incredible results the first one had. In fact, I was not better at all. Short-term turned to long-term disability. My financial situation deteriorated. My emotional state plummeted. I became essentially non-functional. If I got from my bed to the couch downstairs it was a big accomplishment. This went on for a couple of years. I became suicidal. I was treated at a trauma treatment center for three weeks. My emotional state improved while my physical state continued to deteriorate.

Then I moved. There were many factors that brought me from northern Virginia to central Florida, but the biggest thing (healthwise) that I got out of it was a new doctor who profoundly changed my outlook, my options, and delivered (to an extent) on promises of relief. I’ve been with him now for about two years. I’ve had several surgeries. I am better. I am not cured. I am not pain-free. But I am better. And more than that – I have hope. I often get the most amazed response to that statement. After more than 14 years of chronic pain, how can I actually be hopeful? Well here’s the thing…I had a surgery that did not exist when my condition began. And it has helped me. Not in the ways or to the extent that I was led to believe, but it did help. So why would I not assume that this incredibly complex science being explored by some of the most brilliant minds in the world would not continue to advance? It will. And I will continue to reap the benefits of that progress.

So to all of you out there at whatever stage of chronic migraine or cluster headache or whatever other disorder – hold on. Keep going. Find a good specialist and keep your expectations in check. Progress is possible and there is reason for hope. And for all of you out there who are “old hats” at this chronic pain thing – reach out. There are people who need you. None of us is alone. There are others – many others, who are going through the exact same thing as you. We deal with the same challenges, the same questions, the same stigma, the same need to not be alone in this battle.

So here’s to better science, less pain and many new connections!

 

 

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Hold On Pain Ends

I learned the most wonderful new acronym recently: Hold On Pain Ends. It’s funny how simple it seems, but how difficult it can be to practice sometimes. I’ve written before about what it means to keep on hoping through desperate or painful or sad times. But this phrase carries a lot of special meaning for me. I recently stumbled across a picture of myself from nine years ago. It stopped me dead in my tracks. I almost didn’t recognize the face staring back at me. Young. Vibrant. Happy. Successful. I wondered how just nine years could age me so much. And here’s the real kicker – that photo was taken at about 1:30 a.m. after working nearly non-stop for three days on a big proposal at my consulting firm. I should have looked ragged and tired and worn. I couldn’t even physically work those hours today, much less look good doing it at 1:30 in the morning the third straight day.

So what was it about that time in my life? I was five years into this migraine ordeal. I was clearly working way too much. But I had held on. At times where there seemed absolutely no reason to believe that my pain would lessen, much less end, that I could find happiness given some of the struggles I was dealing with, reeling from the loss of some of my closest loved ones. I held on. I continued to HOPE. Against reason, against odds. And one day, 6 months prior to that picture being taken, I was put on a new drug protocol by a truly remarkable team of doctors at the Michigan Headpain and Neurological Institute in Ann Arbor, MI. And the pain became less. It strengthened me. It renewed me. When I say I look at that picture and I see success, it is not because I was making a ton of money or even that we won that contract; we lost it in fact. But I was more able than I had been in a very long time. I was able to work for days on end with almost no breaks for sleeping or eating. I was able to sit in that conference room, working through ridiculous amounts of paperwork, barking orders at people three times my senior for their lack of focus and stop to smile pretty for the camera for my new employee photo that just had to be taken at that exact moment because it was the first time I’d been in one place in the office long enough to for the girl from HR to track me down! Tt photo

All that is well and good, but putting things in perspective, there were five years there prior to that moment when one treatment after another DIDN’T work, right? And during that time I dealt with some things I wouldn’t wish on my worst enemy, both physically and emotionally. I had learned a hard lesson early on in this migraine thing. HOPE is essential. But so is managing your EXPECTATIONS. If I had continued, as I did in the beginning, to EXPECT each new treatment or medication or procedure, or whatever, to work, I would have lost hope. I have not a doubt in my mind. Learning early on that most things were NOT going to work allowed the treatments that have had positive impacts be more successful, their results more genuine and the overall effects on my pain, my life and ability to maintain hope exponentially greater than if I went into each one expecting it to be “the one.”

When that treatment regimen that I began in July 2005 started working, it hit me out of the blue. The alleviation of my symptoms felt like it fell right out of heaven, knocked me on the head and bounced half the pain right out of there! There was no false positive. No placebo affect. I had approached my treatment for so many years with the “hope for the best, expect the worst” frame of mind that when real, measurable improvement came, it sent me soaring. I couldn’t doubt it. And for a long time after that the quality of my life truly was immeasurably changed. It was that change, in fact, that allowed me to deal with the death of my fiance, by far the most difficult thing I’ve ever experienced. And that series of events, I know, happened in sequence just as it was meant to.

The marrying of those two essential functions – managing expectations and maintaining hope has saved me so many times. But I failed at one of them in an extraordinary way last year. After the last post, Suicide Won’t Fix It, I got a lot of feedback and a lot of tough questions. Some people were shocked. Some were sad, angry, confused. All of this, I expected. But the only explanation I can offer is this – I failed at managing my expectations. When I learned that I was a candidate for the neurostimulator implant surgery, I allowed my doctors to set my expectations at a completely unrealistic level. I envisioned no pain. I saw doors and avenues that have long been shut flinging wide open again! I saw absolutely limitless potential, every possibility available once again. I saw a new life. I saw a new me. After 12 1/2 years of very successfully managing my expectations, I made that one very grave mistake. And I rode the high of those expectations all the way to the moon. And when reality clashed with those expectations, I lost. I fell. HARD. It was the crushing blow that at one time I had been cautious enough to protect myself from, but from which I was at last was feeling the impact. When I came crashing down from that high, I crushed every ounce of hope I had managed to hold on to for nearly 13 years.

It’s one thing to live with chronic pain and to know that even with limitations, there are still some things that work; moments of feeling well, daily success stories. It is quite another to suddenly think you are on the brink of a new life, and to fall crashing back into that seemingly bottomless pit. So I urge you – whatever it is you deal with – migraines, fibro, depression, anxiety – manage your expectations and maintain your hope. It comes in many forms, but one way or another, in small ways or in big ones, if you do Hold On..the Pain does End.

hang in thereThere are some other interesting reasons why this acronym is so close to my heart. And this goes to show that things really do come full circle. When I was in middle school, I was obsessed with horses….mine in particular. Her name was Hope. I didn’t name her that; she came to me that way. And it was perfect. I had several posters in my room at the time. One was a herd of wild horses galloping down a beach. It was magnificent and there was one horse who reminded me so much of my Hope. And directly across from it on my other wall was a very famous poster with a picture of a tiny kitten hanging from a branch with the words “Hang In There.” I remember reading those words so many times over and over during difficult moments. And now, with this fabulous new acronym, those three wonderful things from my childhood – my horse and my two favorite posters are melded into one incredibly powerful phrase…Hold On Pain Ends. Some day I hope to be well enough to run a wildlife rehabilitation center. I have known for many years that if I am able to do it, I will name it New Hope Ranch. This lesson; this phrase; this entire lifetime of experience shows me that it is still the goal I must keep holding onto and keep striving to reach. court and hope

Suicide won’t fix it.

In a dark and hazy cloud my eyes slowly started to open. I couldn’t breath. I couldn’t swallow. I was choking. I reached for my throat; I needed air. But my arms moved only inches before the restraints arrested all efforts to stop my choking. My arms were tied. My legs were tied. My upper body strapped in place. I tried to lean forward. A woman rushed at me and pushed me back against the bed hard and told me to relax. RELAX? How could I relax? I was choking. And apparently restrained. But why? Where was I and how had I gotten there? She exited the room in a rush. I couldn’t move my arms enough to reach my face but I could lean forward just enough to reach the finger tips of one hand to the thing that was choking me. I tugged. Pain. I pulled. More pain, but progress. I yanked and with a painful, pressure-laden, tearing movement, the tube that was choking me finally came free of my throat. Relief came, but not without a good deal of pain. And blood. The woman came back. I looked at her and realized she was a nurse. I was in a hospital. She spoke harshly. “What have you done?? I hope you’re proud of yourself, you certainly damaged your vocal chords, perhaps irreparably.” She was right. But that was the least of all of the consequences of what landed me in that hospital bed.

The precise sequence of events is still a blur. My mother was there. She looked tired and scared. I began to remember what I had done; why I was there. I shouldn’t have been there. I should be dead. Then my heart sank. If I wasn’t dead; if I was here, in the hospital, someone had found me. A fear like none I had ever known gripped me. In a painful whisper I asked,  “Did Lawrence find me?” “No, my mother said, trying to choke back the tears that were falling. “Is he ok? Did he know I was ok?” I knew my mother could not have been the one to find me. I had made sure of that. But Lawrence was a different story. If he had found me in that state I could never have forgiven myself. But still my mother stood there and listened to my first words, my first concern be directed at someone she had never met. Someone I barely knew. In some ways it was a pretty good indication of how screwed up I was. My first words should have been “I’m sorry.” It would take time for my thoughts or actions to make sense. It would take time to find all of the forgiveness that was due. To my family, my friends, even to myself. I had done the unthinkable. I had been cowardly and weak and had tried to take the easiest way out of my pain. I had tried, and nearly succeeded in killing myself. Had the paramedics reached me mere minutes later, I would have been gone. My plan would have been a complete success, and my life, a failure. And I would not be here to tell of it. I would not have had the chance to beg for forgiveness from everyone I hurt. I would not have the strength to face whatever comes, knowing I have already faced the very worst, and survived. And I would not have the opportunity to tell you that whatever you are feeling is absolutely valid. And if you are considering taking your life, I get it. But I hope you choose differently than I did.

This is not an easy thing to talk about. It is not easy to think about. And I know it is not an easy thing to read. For some who know me this will be the first they have ever known about my suicide attempt. And to each of you, I am truly sorry. Some think I should not write about it. I should not expose it. But I have an obligation. Because out there, among the masses who might stumble upon this post, there are some who are there, in that dark and lonely place wondering, planning, deciding. I beg of you – please keep reading. Where it seems there is no other way, where there appears only darkness and pain, I promise you, there is hope. And I know this only because I have walked through complete hopelessness and emerged on the other side, just barely. And I am so grateful for that. For the chance to tell you there is another way. There is light. There is a reason to live. And whatever guilt or darkness or fear or stigma is eating away at your will to live – SCREW IT. You are where you are because whatever is happening in your life seems too much to overcome. And you have no idea how many of us understand that. I’m not trying to persuade you that your feelings aren’t valid. Just the opposite, in fact. They are very real. Real enough to convince you to consider death as the best or only alternative. But there’s more.

The circumstances that brought me to that place are fairly irrelevant. Not because they weren’t real or valid or enough. But because these circumstance are different for everyone. The results, however, are the same. Being suicidal comes from something different for each of us. Those close to me always want to know how I could have thought death was the only way. In truth, there were times in my past when it actually appeared to have made more sense that I would have been suicidal. And there will be people who ask you this question, who will not understand how you could think death is the only way. All that means is that they are lucky enough not to have experienced being where you are. It is not judgement. It is fear and love wrapped up in what often feels like judgement.

The circumstances don’t matter. That sounds harsh, I know. But it’s the truth. Because no matter what each of us is going through, no matter what has brought us to this place of unimaginable suffering that we know we cannot bear for one more moment, the only thing that matters, is that those circumstances, all put together, no matter their enormity, are, above all else, TEMPORARY. In fact, all of what we experience is only temporary. The fleeting highs and the apparently interminable lows. The good days, the bad days. Our triumphs and our losses. All of these things that make up our experience of life are temporary. And to use a permanent, irreversible action, suicide, to deal with/escape/end/fix…however you choose to describe it, is…this decision is, at its core, illogical and flawed.

I wish I had known so many things that day. I wish I had known that despite the hopeless way I felt, hope did still exist, and would find me again. I wish I had known that the enormity of all of the things that I was dealing with, while they felt too much, too big, too heavy, too powerful to overcome, would, in fact, be overcome. Not all at once the way I felt I needed, but little by little; they have been…they are being overcome. Some part of me wishes I had known the true nature of pain that I was about to inflict on those who love me most. That I could have foreseen the pain ingrained in every fiber of my mother’s being because of what I had done. But perhaps it’s best that I couldn’t grasp that in those moments because for me, guilt was a heavy weight on the scale inching me towards suicide. From this side of the choices that I made that day though, I live with the fact that I cannot erase the permanent image of me lying in that hospital bed, bound to it, unconscious, with a machine breathing for me and tubes coming out of me that she has etched in her memory. I wish with all my heart that I could take that away. I wish I had known the panic and terror in the hearts of everyone who was desperately searching for me, knowing that each minute that passed by could be the difference between life and death. I wish I had known that less than a year later, I would be sitting here on my couch in my new apartment, minutes from the ocean, having overcome so much of what I thought that day, in those last moments I would never be able to live with. I wish I had the voice of someone who had been in my shoes speaking into me the strength and hope that might have made the difference in the choice between life and death. Or simply a hand to hold in silence that might have delayed my action long enough to change my mind.

Suicide is a funny thing. For those who are truly suicidal, what many people do not understand is that it can be the one, solitary thing that we feel we have control over. It feels like the only thing we can do to change our circumstances, end our pain, fix what is broken. To an extent, that is sometimes true. We do have control over it and many things in life are out of our hands. But the flip side, the reality, the truth we find hardest to see, is that we also have control over the choice to live. To find a way, however impossible it seems, through whatever brought us to that edge. We have that choice. And choice is power.

Suicide is alluring, almost intoxicating because in our darkest moments is promises to fix everything at once. It ends all the pain and suffering and hopelessness in one fell swoop. That promise, that idea that “suicide fixes everything at once”…it’s crap. It’s not real. It’s just a way to avoid facing the harder, better, stronger, braver choice to get through it all…whatever your all is, one tiny step at a time. Don’t feel like you have the strength to take another step? Fine. You crawl. You inch. You slide one hand forward before you can crawl. You make a movement and it is PROGRESS. It is substantial and brave and powerful. It says FUCK YOU to everything that is breaking you down. It is success and it is HOPE.

And no matter how alone we might feel at the bottom of this pit – we are never truly alone. Our actions do not happen in a vacuum. We do affect others in profound ways that we cannot fathom. No matter how alone we feel there are people who will mourn, who will take our actions upon their own shoulders and walk heavy with misplaced guilt, much the same way many of us have/are doing. If you have not a soul in the world who you believe will care if you are gone, there is a paramedic who will be unable to save you. A coroner who must examine you. Someone, some people will suffer from your actions. I say this not to inspire more guilt. The choice we make  must be about ourselves, not those around us. I say this to remind you that no matter how isolated you feel,  you are never truly alone.

I won’t go in to all of what kept me alive when I was absolutely, resolutely determined to die that day. For now, I will say this. I had planned meticulously. I hurt more than I ever had dared to imagine possible. I was 100% sure of what I was doing. I was crumbling beneath the weight of things I no longer had the power to keep from crushing me. But I was WRONG. I know that now. And if you are in that place I promise you with all that I am, you are wrong too. You can, and should CHOOSE to live. That much you do have the power to do. The rest of it, whatever it is, no matter how much it hurts, will someday be behind you. But first you have to make that choice. Take that step. Move, just a little – forward. It is worth it. YOU are worth it. You are more powerful than you can, in this moment even conceive. I know you are, because I was you. And today, I know beyond a shadow of a doubt, that I am more powerful than anything that life might throw at me. And despite the years of falling down into that pit, in that place where the cold and the dark and the fear and the hopelessness and pointlessness all collide, my choices can keep it all from owning me ever again. And your choices, today, can lead you out of it. So choose. Be braver than I was. Be the strength you don’t dare to believe you have. Do the one thing you feel you cannot do. Choose to live.

Migraine, Fibro and Gratitude.

Anyone who has followed this BLOG or who knows me personally is aware of my battle with intractable migraines. I have not discussed fibromyalgia here in any detail. For a very long time I didn’t feel I should even identify myself as someone with fibro. I have friends with fibro and have read the work of others living with fibro that is so invasive and debilitating that the few symptoms I had that led to my initial diagnosis many years ago felt insignificant. It felt like an insult to those who had “real fibro” for me to claim to be affected by it at all. About six months ago, all of that changed.

Fibromyalgia is a progressive condition (a syndrome rather than a disease) that affects “an estimated 10 million people in the U.S. and an estimated 3-6% of the world population” according to the National Fibromyalgia Association. That’s a lot of people in a lot of pain. But a large portion of those suffering from fibro go undiagnosed or misdiagnosed for years. The symptoms mimic those of many other conditions and there are still many in the medical field who refuse to even recognize fibro as a legitimate or real condition. Thankfully its recognition and thus its treatment has been rising steadily over the last decade.

I have no idea how long I’ve actually had fibro, because there was so much overlap between my fibro symptoms and those of my migraine condition and the side effects of several of my migraine medications. I was diagnosed with it about 7 years ago. At the time my symptoms were relatively inconspicuous. The most bothersome of any was the pain that was caused by even a light touch on my arms. My boyfriend would put his arm around me and rub my arm gently and it felt as though he were digging his fingers in as hard as he could. That seemed like small potatoes. It was nothing compared to what I dealt with from my migraine condition and nothing compared to what I knew others experienced from fibro. If you’ve read Mary Gelpi’s incredible blog, Fibromy-Awesome, you know exactly what I’m talking about.

Illustration of the Reed Procedure

Illustration of the Reed Procedure – yes – I am the real deal bionic woman!

So what changed? Some of the symptoms from my migraine condition eased up after my neurostimulator implant surgeries (the Reed Procedure). I am on fewer medications than I have been at any other time in the last 13 years (only 16 a day! Woo-hoo!), and consequently dealing with far fewer side effects. Seemingly out of nowhere, my body turned alien. I started waking up with my hands so swollen I couldn’t make a fist. My legs and feet swelled so much that from the knees down I was a clone for someone 9 months pregnant and ready to burst. Many mornings my entire body is so stiff that merely getting up out of bed requires a series of countless tiny movements to stretch and ease the tension in every joint and muscle. Days of exhaustion so severe that I cannot do anything that is not an absolute physical necessity have become common. One day the joints in my left thumb were so painful when I awoke that it actually felt broken. My right wrist started intermittently hurting enough that I thought I must have started sleep walking and done something terrible to it. All of these symptoms and more. Apparently out of thin air. Some of them I recognized as fibro right away; others I had no idea could be part of this condition that I had essentially been denying I had at all for nearly a decade.

I was frustrated. I finally made a bit of real progress with my migraine pain for what? To swap it out for increased fibro pain? What in the world had I done to deserve this? It seemed so unfair. Then another thought occurred… what if I had had to deal with all of the fibro pain on top of the worst of my migraine pain? What if this sudden explosion of symptoms had occurred not following the surgeries that alleviated one condition, but had coincided with the onset of my intractable migraine? Could I have survived it all at once? Maybe this wasn’t the least fair thing in the world, but the greatest stroke of luck. Perhaps I should thank God and all my lucky stars that this is happening now, and not years ago when the pain in my head nearly drove me to take my own life.

I have lived by the saying “everything happens for a reason” my whole life. I believe it with every fiber of my being, even when it makes me curse whoever is in charge and when I know there is no way I will ever understand the reason. I do not believe in coincidences. I don’t believe in random chance. I have never been a religious person. My family identifies as Protestant, though we never attended church regularly, and only sometimes on Christmas and Easter. I attended Mass with my best friend as a child periodically. Her family was deeply religious (her father was a former priest). Mostly we giggled and whispered and got in trouble. I have, however, always believed in what some people refer to as God. I have always believed that our souls exist beyond the life of our bodies and that there is something somewhere greater than us all. It has been, at times, an internal battle with the scientist in me. I believe in evolution. No man in the sky created all that is in a week. But I look around the world and I find it impossible to ignore that everything is connected. There is nothing that happens in a vacuum or that does not have an effect that reaches far beyond what we can see.

A few years back on a trip to Grand Bahama Island to visit my father, I stood in a coral cave staring into a pool of fresh water sitting atop salt water. The experience was overwhelming. I found it nearly impossible to leave or resist returning once I had. The way the light came in through the collapsed ceiling where the less dense coral had eroded and eventually given way was amazing. It bounced around beneath the water’s surface making it nearly impossible to tell reflection from surface. The depth was impossible to gauge. The colors were more beautiful than any I had ever seen. It was, and continues to be one of the most awe-inspiring places I have ever been. For me, it was a deeply spiritual experience. My father asked how my trip to the cave was and I told him (after several days of discussion about religion) that the cave was my church. I don’t need a building in which to worship. I don’t need a man to tell me what God says, or to be my messenger. If I want to talk to God I’ll do it myself. I don’t mean that to sound offensive; it’s simply what I believe. My relationship with God does not require any middleman or cathedral.

I know it seems I have gotten off course here with this discussion, but to bring it back around – what I have realized is that I don’t have control over the fact that I have intractable migraines or fibromyalgia. I didn’t have a say in when they started or how significantly they have affected my life. I could allow myself to become bitter and angry that when I started to experience a small amount of relief from one condition, the other flared up with an intensity I had always been grateful not to have experienced. But I choose not to do that. I choose not feel that way. I choose, instead, to be grateful. Grateful that I have not been dealing with fibro at this level for all of my life, or for the first 12 1/2 years that my migraines were completely unabated. I choose to believe that this series of events has unfolded in ways that I might not understand, but are not without reason. I choose to believe that even if I am meant to experience both of these conditions, something greater than us all protected me from experiencing them both at the same time in ways that were more than I could handle.

For those who know me best, much of this discussion will come as a shock. The girl who has studied and worked in the sciences going on about God and spirituality will seem a giant contradiction. I have spent years being critical of those who are deeply religious. Catholics, in particular. The “word of the Lord” as written in the Bible has been at the very heart of many a heated discussion with those who try to use God as an excuse for hatred and bigotry. But we all have a right to our opinions and our faith. That does not, however, excuse any harm we inflict on others in the name of religion or spirituality.

Jesus Calling by Sarah Young

Jesus Calling by Sarah Young

I will conclude with this…a thank you to my mother who gave me a book of daily devotions (Jesus Calling by Sarah Young) that I would never have picked up on my own. She handed me her copy in the midst of a very dark moment when pain and fear and exhaustion were getting the better of me. She didn’t read it to me or insist that I read it. She simply left it by my side. Since then I have read it every day. While some of what is said in this book is at odds with what I believe, the messages, for the most part, have been not only comforting but kept me from falling into weak patterns without purpose or constructive thought. I will leave you with one of my favorite passages that zeros in on something that is both difficult and essential for everyone with a chronic illness;

When you are plagued by a persistent problem – one that goes on and on – view it as a rich opportunity. An ongoing problem is like a tutor who is always by your side. The learning possibilities are limited only by your willingness to be teachable.”  

Sorry Honey, but I might be sick forever.

Someone asked me recently, “how do you manage to keep any sense of hope after so many years of living with this kind of pain and so many failed treatments?” I just stared back for a moment, then responded, “what choice to I have but to keep hoping?” Then I realized, that was not it. I do have a choice. And there have been times when I have lost hope, like so many others. But ultimately, it’s not about the fact that I HAVE to have hope; it’s that I have succeeded in keeping it all this time. For some people hope comes in the form of religious faith; for others an unyielding belief in science and medicine. For me, it comes in the form of accepting what is, and might or might not ever be.

Years ago my fiance said “Some day you won’t have this damn headache; you have to believe that.” Much to his dismay, I told him that actually, it was quite possible that I might always have this headache, and that it was far more important that I accept that, and that I was sure it would help him if he could accept that too. He looked at me bewildered, and then with anger. He was frustrated. To him it felt like I was giving up. But it wasn’t about giving up. I simply had to approach my future in a realistic way and make the best decisions I could with the information I had at that time (two years had gone by since the onset of this migraine…I figured it was time to get real right?). And as true as it was then, nearly a decade ago, it is true today…there is no evidence to suggest that I will ever be headache-free. I know, that thought is just oozing hopeful all over the place! But here’s what it does… it allow me the space I need to operate free from the pain and anxiety of WAITING. I don’t spend my days waiting for the pain to stop or for whatever new treatment I’m on to start working.

What my fiance mistakenly took as me giving up and throwing in the towel was really the beginning of me fighting back with a healthy frame of mind rather than driving myself mad with anxiety over “when will this all end????” Psychology plays no small role in all this. In order of appearance it’s pretty much second in the credits. Once I accepted that I might actually never have another second without a headache, I was able to begin approaching treatments with a more reasonable frame of mind. (Yes, I read that and yes I realize how crazy it sounds, but just go with it for now…) Having a healthy, optimistic outlook when you start something new is great – necessary, in fact. But throwing all your eggs in each new basket and assuming each new treatment is going to be “the one”…not so much. That’s a one-way ticket to kill me-ville paved with the names of every treatment that failed. It’s just another way to let the pain win. Neuroscience, psychology, biology, and the many other factors that go into creating the horrible pain we deal with are unimaginably complex and ever-changing. Each person’s own brain chemistry alone is constantly changing. To find the right combination of treatments for an individual is a Herculean undertaking. So while we might be frustrated with our doctors, imagine the frustration they must also feel.

I won’t ever stop trying new things to deal with my migraines and lessen the pain that I live with. I’d have to be crazy to stop trying. I certainly can’t do nothing. And for those who need more as far as a reason to hope, I suppose I would say this…I am better today than I used to be. So that is reason enough for me to believe that in the future I will be better than I am today. The irony…accepting that this might be a lifelong condition was the single most important thing that allowed me the freedom to hope that it might not be.

Triple Threat

I’ve determined (based on feedback from everyone I’ve encountered in the last 12 years…it’s a good sample size, I’d say) that I’m either

  • A really good liar
  • A super hero
  • A shoe-in for whatever I want to be in the next life

I’ve had to tell so many people about my migraines that I couldn’t even fathom a guess as to the number of oddly screwed up faces that have stared back at me over the years. And they stare back with one of three expressions. The first says “you’re full of crap – no one has a headache that lasts 12 years that never stops.” My question is…why on earth would anyone fake this? Does this actually look fun? The second one says “Uh, wha, I, but…how do you…I just…did you say TWELVE YEARS?” Yeah. These are the people who actually believe what I’m saying, they just don’t can’t comprehend how it can be possible because if it happened to them they might actually just die. And the last one (usually with either moist eyes or full-fledged tears streaming down the cheeks and arms outstretched says “oh my gosh, honey, I am gonna be praying for you. What a terrible thing to have to go through, I just don’t know how you do it.” I think a lot of these people have someone in their lives with a serious chronic illness.

Annie’s rendition of all three faces at once

I’ve meet these three people over and over and over and over again. The first one I’d be happy never to meet again, thank you very much because no, I’m not lying about my condition and no, you’re not worth my time or energy so I will not defend it to you, so you can kindly just buzz off now. The other two are interesting. My favorite is the superhero. Not because I like being thought of that way, but because I think it’s kind of ridiculous. Do you know the most common question I get is “How do you drive?” I laugh. Same as you do. Gas is on the right, brake is in the middle, clutch is on the left. I know that sounds like a snotty answer to a legitimately concerned question, but here’s the thing, when you’re chronically sick, at some point you have to just get over the fact that you’re sick and get on with living. I have some limitations. I can’t always drive when I want to. Driving at night is particularly hard. Sometimes I can’t do it at all; and sometimes I have to wear sunglasses. But I do it. Because otherwise I’d be a creepy shut-in my whole life and I really don’t want to be a creepy shut-in.

When I first started having migraines I was in high school. I remember the first one like it was yesterday. I was at my boyfriend’s house. He’d gone downstairs to get some food. My head started hurting. No wait, my head started really hurting. No wait, my head started trying to kill me. He was only gone for a couple of minutes but by the time he came back I was in so much agony I could barely speak. I was terrified; it scared the crap out of him and the only words I could get out were “call mom.” So he called my mother and with what little information he had, he began explaining what was happening. She told him to get me into the car and give me a towel to cover my eyes with – I was having a migraine.

After that first one they became a regular thing. But they went away like normal migraines. One time it lasted for three days and I had to go to the emergency room they gave me a shot of Demerol to break it. It was all fine until August 15th, 2000. That’s when “the big one” hit and just never stopped. The first few weeks were the worst because I was still waiting for it to stop. It was only when I stopped waiting and began to accept that it might NOT stop that I was able to START living again.

Bertrand Library, Bucknell University

I was nearly half way through my fall semester of my senior year of college. My advisors and the administrators were pressuring me to take a medical leave of absence for the semester. I refused. I got all of my missed work from my classes, got caught up, finished up the semester and not only passed, but got a 4.0. I was determined not to let this headache define me.

I made a choice that fall. I chose to live. I chose to exceed expectations. I chose to survive and to thrive and to do what I wanted and what I believed I was capable of rather than what I was told I would never be able to do. People say to me all the time, “When I have a migraine I can’t do anything.” And the only way I can respond is to say “If you lived with one every minute of every day, you’d learn how to do everything with a migraine. Or you’d choose to stop living. It’s just that simple.” We can’t control the hand we’re dealt, only how we play it.

Lovely Moments

For 12 years I’ve been living with a thief. An insidious, grotesque, invisible thief that has stolen some of the most valuable things in my life. And no matter what I do, or who I go to for help, no one can stop this monster! It is the unrelenting, unforgiving, merciless pain in my head. It is my invisible disability.

Growing up I always got good grades, was involved in all the right extra curriculars and was on the college tract. Mom never had to tell me to do my homework or to watch less television. I was never called to the principal’s office. More likely I was waiting at his office because he was late for a meeting I had scheduled with him. (If the words goodie-two-shoes or teacher’s pet are running through your head, you’ve just discovered my high school nick names.)

I got my first job when I was 12 years old. I had to get a special work permit from the town clerk’s office with my parent’s authorization because I wasn’t not legally old enough to work yet. But I wanted to make my own money and I wanted to work at the vet’s office. Ok, so I was a great kid…what’s the point, right? The point is, I’ve always had an independent spirit. The ironic part…I was able to be more independent as a teenager than I am now as an adult…all because of my disability.

This is what happens. Disabilities rob us of many things. They’re like evil little thieves with invisibility cloaks running around our lives stealing at will. I have lost financial stability and physical capabilities that once allowed me to be completely self-sufficient. And it’s not as if any of this happens in a vacuum. Loss of independence almost invariably leads to anxiety and depression. Here’s where I’m at now…

  • Can’t hold down a job – awesome for the self esteem, really!
  • Can’t afford to live by myself – my ex just loves having me hang around two years later, honest!
  • Often need help with simple daily tasks such as making meals or walking the dog – really feeling good about myself now!
  • Need help administering medications -all the injection sites I can reach are used up – need to let them heal for a while, but hey, I’ve taught valuable medical skills to so many of my friends!
  • Can’t drive at night – the sick, poor girl with a chauffeur – cool!

….Just to highlight a few examples. Yeah. Awesome. Just what I always wanted to be when I grew up. Well, OK. So things haven’t exactly worked out the way I had hoped. And I’m making fun of some pretty serious issues, but really, what else can I do? This is where acceptance and reinvention come in…not just for me, but for all of us. We live with chronic conditions that fundamentally alter the way we live our lives. It doesn’t matter whether it’s fibromyalgia, or chronic migraine, or chronic fatigue syndrome or depression or bi-polar disorder. Adjustments have to be made to the internal way we frame our view of our existence. Whatever shape that frame started out as, it’s going to have to change to fit the new picture.

At 32 I thought I would be married with kids leading a successful career. I am a little ways  from off that. Okay, that’s in a different galaxy. I’m single, childless, unemployed, and living with my saint of an ex-boyfriend. But I’m moving forward. I’ve adjusted my frame; I’m focused on the new picture ahead and I’m getting there, one step at a time. And I’m taking the time to get every ounce of enjoyment of out each day that I can. Today I get to spend time with some horses and watch my dog have a blast with her new best friend. These are simple things, but they make me happy. There is plenty of time for complex things and I know there will be days when I will look back and wish I had time for simple things the way I do today. So while everything about today might not be ideal, I’m choosing to seize all the lovely moments.

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