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

Posts tagged ‘invisible disability’

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!



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

Bittersweet Victory

I had a big win recently. My request for an expedited hearing before the Social Security Administrative Law Judge was approved. We waived the right to a 20-day notice and were notified on January 21 that my hearing would take place on the 24th since there had been a cancellation. For three days there was a frantic race to get ready. A race to pull together all of the arguments and facts and answers. After years of waiting, suddenly it was a rush to pull it all together before Friday. I met with my lawyer. I spoke to my family. I got letters from friends, family members, previous doctors. And then we went.

I sat in a tiny room with an awkward setup staring up at the man who would decide my fate. He was kind and comforting and patient and reassuring. Nothing like what I had imagined. I think that I’ve just been fighting so hard for so long that it was actually a little unnerving to not feel as though I was facing an opponent in that room. My lawyer gave an opening argument. The judge asked questions. My lawyer asked questions. Then the judge started to move to the “VE,” the vocational expert. These are people whose job it is to find any theoretical job in the national economy for a theoretical job seeker with the limitations of the person applying for disability. My lawyer had explained this before the hearing and said not to get upset or defensive when he or she listed the jobs. “They always find jobs,” he told me. It’s the lawyer’s job to cross examine the VE and challenge the idea that I could do any of the jobs with my limitations.

My mother was with us, waiting outside. She was going to testify if the judge allowed it – not all do. So when the judge started to call on the VE, my lawyer said that she was there and could offer testimony regarding the nature and severity of my condition and the limitations I face. The judge looked back and said “I don’t think that will be necessary.” My heart sank. He continued… “I believe I’ve heard all I need to hear. We’ll just get the VE on the record and then rule in favor.” The world just stopped. Much like I had asked it to a million times. But this time I hadn’t asked. The judge just made it so with three words.

“Rule in favor.”

I kept hearing it. He began questioning the VE. He threw out the set of limitations that I have and asked if there were any jobs for a hypothetical job seeker with such conditions on the light exertion level (social security splits jobs up into exertion levels.) There were none, she told him.

“Rule in favor”

It kept playing in my mind. He removed some of the limitations. There were still none. This went on for a couple of minutes until he finally asked if there was any job at any level that the hypothetical candidate could do. “No, your honor. None.” I knew in my head that those words solidified what the judge had already concluded.

“Rule in favor.”

I had won. But what on earth was going on? I was shocked. That made sense. I was happy. That made sense. I was all kinds of things that made sense. But I was sad, or upset, or….something I couldn’t quite put my finger on that I knew didn’t feel good. And then it hit me. I had just sat in a room answering questions and listening to my lawyer prove beyond a shadow of a doubt that there is not a job anywhere at any level that I can do. It’s funny how living with something, and fighting to get others to recognize it is so completely different from having someone else say it or prove it.

The only analogy I could come up with was this…if you talk badly about someone in your family it’s not a big deal. You love them; you’ll get to each other every now and then. But if someone OUTSIDE of your family says anything bad about that person – WOAH! Step back – now THAT is not cool. Even if all they do is repeat what you have said, it sounds so different when they say it. Feels different when they say it. It’s WORSE when they say it. Well it felt really different to hear that VE and that judge say that I am, in fact, disabled. That I cannot work.

It took me a few days to get things clear in my own head and in my heart. I was happy. And grateful. And the initial sting wore off. I focused on the fact that it won’t always be like this and that now, finally, at least I will be somewhat able to support myself. It’s kind of strange, to be honest. Strange to get up every day and not be waging this war. I’ve been fighting for disability for so long that it still feels a bit like I’m not doing something really important every day.

There is still a lot to figure out. The final decision hasn’t been put on the record. They haven’t sent me the paperwork with my award amount and all the details. It will be a while until my benefits begin. But the judge was very clear. And my lawyer said that the VE not finding ANY jobs – that doesn’t happen. I still have to sort through my decisions about health insurance and what I’ll need on top of medicaid. But the fight is over. And I won.

I put off applying for SSDI for a long time because I refused to believe what was proven in court two weeks ago. I thought it meant I was weak. I thought it meant I had given up. I wanted to believe it was not true. But you can’t hide from the truth. At least not forever, and certainly not without consequence. I hid for a long time. And it cost me all of my money, many nights and even weeks in hospitals, and nearly my life. And it cost my family an enormous amount too. But this decision marks the start of a new reality for me and a new truth. I don’t yet know what it looks like or what it will feel like, but I am, above all things, grateful.

This has not been an easy road, or a comfortable victory. But it is a victory. One that I pray each of you plodding along in the same heavy shoes has the strength to keep moving toward, one step at a time. There are many road blocks and the system is designed to make you give up. But don’t. Keep going. Keep fighting. It is a long road. A hard road. And you are fighting for something you wish with all your heart you did not need. But you do. I do. And though it is somewhat bitter – there is still sweet victory at the end of this journey! So here’s to strength and perseverance, and to someday not needing that for which we have all fought so hard!

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.

Wear my Head for a Week

I’ve written before about invisible disabilities. Mine of course is migraines. (specifically, chronic migraine, intractable) Most of the time I’m baffled by the way people like employers or insurance companies or whoever else can just brush it aside because, of course, they can’t see it, so why both to even acknowledge it? But a few days ago, someone I’ve been friends with for several years caught me completely off guard. She asked me to tell her about my disability because she really didn’t know anything about it. She said she knew that I had migraines, but that was all she knew. I was dumbfounded. I have known her for years. I’ve known her through the loss of more than one job, short and long term disability, insurance battles, the works. And somehow, she’s gone all this time without knowing what any of it is about. What had she thought it had all been about? I guess the small amount of information she had (that I had migraines) was a sufficient answer.

I found it baffling. Disturbing. Self-absorbed? Or…wait. (here’s the self-reflection part of the story – cue the music) Perhaps it was just self-absorbed of me to expect that she should know, or have made an attempt to know before now. Regardless, she made the effort on Saturday, so I decided to just be grateful for that and take the opportunity to share my story with my friend and hope that it would bring about a better understanding between us.

We sat at the counter at Chipotle’s and I began explaining it to her. I explained a bit about the difference between headaches and migraines, and then migraines and chronic migraines, and then chronic migraines and chronic migraines that are intractable. So by the end of my very abbreviated description of everything, (I tried not to bore her to death) she understood that I suffer from a kind of migraine that never goes away. Sometimes it’s better, sometimes it’s worse, but it N E V E R goes away. And this was something about my migraines that was a real shock to her. I didn’t expect it to be, but I’m used to it.

Even so, she didn’t have much of a reaction at first. But then she began asking some questions, mostly about what the doctors could do for me. I didn’t go through the 8 mile long list of things we’ve already tried. I just explained the few things that we have planned over the next several months. One of them, if the others fail, is to do a hysterectomy. She had a much stronger reaction to this than to anything else I’d said thus far. She wanted to know why I would consider such an extreme measure when I’m only 32 and I want kids so badly. Our other friend who was with us at lunch said, “Ah, because of everything she just explained to you – were you even listening to the first half of this conversation?” And it was in that moment that I realized, it still didn’t matter. It didn’t matter whether it was a new boss or an old friend or a stranger on the street. It didn’t matter if they had known about my condition for years, or if the very first description was so fresh in their minds that they couldn’t escape it. It is so invisible that it is actually incomprehensible unless you are living it.

And it’s not always because of callousness or the bottom line. I realized I play a huge role in this invisibility. In fact I spend most of my life making it invisible. My livelihood depends on it, for one thing. And the ability of the people I share my life with to be comfortable and at ease does too. When you’re in pain all the time, you can’t show it. Let’s face it, no one wants to be around that person. It’s awkward and no fun. And I want to have fun too and it’s easier to have fun when I’m the other girl; the one who seems like she’s fine and whose head isn’t trying to kill her 24/7. There are times when I can’t pull it off. And my closest friends are always the first to notice the signs. But all in all I’m a damn good actress. And so I guess maybe it’s not so much that my friend never really cared before now. Perhaps I just never let her see enough to realize how much there really was to ask about.

When I got home from that day out, my roommate said to me, “I wish that everyone could feel what you feel just for one week so that they could understand so they would be more compassionate” (not just in reference that this story, but in response to a larger conversation we were having). I said that I didn’t wish that; that I wouldn’t wish this on anyone. And part of me still stands by that. But on the other hand, I guess she’s right, without experiencing this, there just isn’t a way for anyone to truly understand, and for that, I would give almost anything.

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