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Archive for the ‘Intractrable’ 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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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.

When Blogging Works

Most of us blog with a purpose. We hope that by sharing our experiences we will touch lives; we will inspire, or give hope or educate. I hope that by sharing my journey as a migraneur there will be people who read this blog and realize that they are not alone in their pain, that it is our right to stand up and fight for fair treatment by employers, insurers and society.

Guess what…BLOGGING WORKS!

In addition to the responses I’ve received from other bloggers and readers in recent weeks, something reallly amazing happened! A woman I met a few years ago (in real life…the kind with actual face to face, hand-shaking type stuff going on) contacted me via Facebook. She wasn’t even sure I would remember her, but she read my blog and she took the time not only to comment on what I had written, but to share her own migraine experience. I was so touched…and so HAPPY! Let’s be clear, I wasn’t skipping around my living room because I’d found another person living hellish condition – I’m not that evil! But as a direct result of reading this blog, she is no longer alone in her migraine experience. This condition that so often leaves sufferers feeling so alone is no longer going to rob her of the comfort of having someone in her life who understands what she is living through. To me, if nothing else ever comes of this endeavor, it has already been entirely worth it.

We chatted about pain patterns, depression, the financial burden of this condition, rebound headaches, alternative treatments, hormone therapies, diet. I’m not sure which one of us got more out of that conversation, and I suppose it doesn’t really matter. The important point is that we both have one more person in our migraine support network. And blogging made that happen! So bloggers, keep blogging. And readers, keep reading. Here’s to all of the many inspired connections that await us!

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