Migraines, Meds and Making Connections

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

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!

 

 

Ginger Tea and Jewelry

A crack of thunder so loud it shook my building a little while ago and interrupted Chloe’s afternoon nap on my lap. She’s now hiding under the couch. I sort of wish I could hide under there too. Not from the thunder, just because it’s one of those days where my mood is very much like the downpour that darkened the day outside. Unlike the storm that passed quickly and gave way to the beautiful sunshine, my mood is not improving. Instead I’m battling with pharmacies and prescription discount programs and doctor’s offices.

I am tired. Exhausted really. Which would sound insane to the average person given that the most strenuous thing I have done today was to make ginger tea to settle my stomach. I’m coming off of one of my medications that has been wreaking havoc on my body for months. While I am glad to be getting off of it (and excited at the prospect of losing all the weight is has caused me to gain!) the process of ending it is quite challenging. It is disrupting my already troubled sleep, making me throw up, exacerbating my migraines (primarily due to the sleep disturbance). I have to make concessions. Worse – the people I love do as well. I could not make it to my mother’s house for MOTHER’S DAY. Irritating beyond belief. I finally live close enough to be with her in person on the day meant to celebrate her and in stead I was stuck home in bed. But in a few weeks I will feel better. Less sick, more energetic, hopefully in less pain and I will go spend much more quality time with her.

So I didn’t get to do what I had planned today. Instead I am barely staying awake, attempting not to further disrupt my sleep tonight by giving in to the temptation to nap this afternoon. I was up almost all of  last night throwing up. No matter how many times I brush my teeth I can’t get the smell of vomit out of my nostrils. But I worked on some jewelry. What should have taken minutes took much longer and it wasn’t much to show for the day, but I made something beautiful. And that’s something.

My big accomplishment for the day 🙂

Sometimes we have to measure success in different increments. One day it means cleaning the house; another it means scraping up enough energy to shower and eat. Today it is getting through. And making that necklace was a bonus.

 

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.

There’s no Trying on Everest! DO it!

Tomorrow I turn 35. I have no big plans – just a quiet dinner with family, but still it feels like one of those “milestone” birthdays. I’ve been reflecting on the path that brought me here. I’ve mulled over all of the challenges and choices and lessons that brought me to this age, this frame of mind, these circumstances, the state of my health and of my relationships. I have looked back at years of thoughts and dreams and accomplishments and failures immortalized in ink. In journals, unsent letters sitting in boxes, tiny scraps of paper carelessly tossed into drawers. Reliving what the world looked like through the eyes of younger versions of myself is such a uniquely interesting experience. To celebrate, I thought I would share two gems I found. One is scrawled on a piece of scrap paper that seems to wind up in different boxes each time I move (apparently saved many times over from the recycling bin). The other is from a journal that documented a particularly difficult year.  I’ve read both of them many times. I find myself wondering about the moments when these thoughts spilled out of my brain, not sure exactly what prompted them at the time, but always amused that they remain relevant and empowering, no matter where I am or what I’m facing.

---

I have dreamed of being a writer, a dancer, a mother, an explorer, a journalist, a teacher, a scientist, a wife, an advocate, a traveler, a well person….my list goes on and on. Today, on my birthday, I dream most of being an independent person, open to new love, with the possibility of a career. They might not seem like big dreams, but from inside the walls of the pain I live with every day – they are my Everest, and I am busy collecting the tools I will need to conquer it. Life keeps on happening, and so do I.

---

 

TOMORROW I WILL DO BETTER. No matter how good or bad or mediocre my days are, I will always strive to do better, to be better. I will challenge myself to dig deeper; to think bigger, to be more generous, to love more openly, to be more kind. I will try harder to forgive others and to forgive myself. I will concentrate less on everyone’s faults (including my own..especially my own) and to BE MORE POSITIVE! I will SMILE more and LAUGH more and DO more to create happiness. I will focus on the good around me and in me. I will endeavor to learn more and cultivate new skills, new friendships and new hobbies. I will be more productive. I will have more fun. I will be a better friend, daughter, sister, self…

Nothing in this world ever changes if we focus on besting one another. We must challenge ourselves. Progress comes when we commit not just to TRY, but each and every day to DO better than we did the day before. So today, and every day, I promise that TOMORROW I WILL DO BETTER!!!

 

 

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 – 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

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.”