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

Archive for the ‘Support’ Category

Oscar-winning Performance.

oscar11Otherwise known as…your life. When you live with chronic pain, life truly is your stage. You smile; you make small talk; you get through as much of what must be done each day as you can. You show up to work, perhaps. Many of us can’t anymore. We’ve lost that theater.

It’s hard at first. Particularly in the early weeks and months when you haven’t yet stopped waiting. Waiting for the pain to stop, or lessen. It’s the moment when you realize – or perhaps accept, more accurately, that this could be – most likely is – permanent. The pain isn’t going away. The condition – it’s a part of you. It has been your primary focus. The focus of your doctors, your friends, family, coworkers, schoolmates – everyone you know or see. But in that moment of acceptance, something changes and you begin weaving it into the background in ways you never thought possible. Doing things you previously imagined you might never do again. You take off your sun glasses for the sake of respect in conversation. You drive, despite the piercing pain of the headlights. You attend a party you know will take a devastating toll. You go to the grocery store. You take your kids to the park. You do the things that most people take for granted each and every day. And you do it in pain with a smile on your face because it’s how we have learned to survive.

fire redYears go by. You realize that there are more people in your life who have never known you without this pain than those who ever knew you pain free. Some still don’t know. It’s incredible. The reactions when people find out? Sometimes I’m not sure if I’m more astounded by how they could have missed it than by how I could have hidden it so well. I think back to all the times in conversation when I thought I would pass out from the pain – but apparently my performance never faltered. I have former clients from my consulting company who demanded me on all their projects. They never knew. Coworkers who were clueless until the day I left on disability. People in all manner of interaction who react in such amusing ways when they learn the truth that has literally be right in front of them. At least that’s how I’ve learned to look at it. Some with awe – both at my ability to hide the pain, and that to withstand it. Some with shock or sadness or my very least favorite (read: I HATE this….) – pity. “Oh you poor thing!” I get it. I can’t blame them. I think it’s meant more as an attempt at compassion, but pity is pity and I work too damn hard at this to be pitied. So do you.

oscar_fallen_hLet me ask you something though…if any Hollywood actor was told he/she would be on set for the rest of their lives, never allowed to break character…what do you think the reaction would be? Disbelief? Outrage? Laughter? That is the role we often feel we are cast in. Keep up appearances. Hide the pain. Wear the mask. But let’s be real. None of us can do it. We can’t hide it all the way all the time. And we need a safe place to remove the mask. The let down our guard. To be vulnerable. To be in pain openly. Cry if we need to, even though it makes it hurt more. Somehow, every now and then it helps too. Sometimes just being able to say that it hurts. Or that we’re tired of it hurting. Without judgement or pity or guilt or frustration. That’s a lot to ask. Of anyone. It’s hard for those who care for us most NOT to feel those things. Not to show those things. And they will come out too from time to time, so to be fair – I guess we can’t expect to never get that side of it.

different kind of maskBut do you have that safe place? Do you have those people in your life that you can be nakedly in pain in front of without judgement or pity? Do you have a way to step off the stage and just be – you – pain and all? If the answer is no – then something has got to change. Finding that safe place – that safe person or people – is worth a thousand “remedies.” The mental and emotional and physical fatigue that accompanies these daily performances is SO underestimated.

Give yourself the credit you are due. Take the breaks you need to take. Find the safe place. The comfort, support and tenderness you deserve. Take off the mask and cry. Curse your pain and all the effort it takes to hide it. You’ll be amazed at how renewed you will find yourself. How much more comfortable that mask is to put back on when you get out of bed, or take a shower or walk out the door or if you’re lucky enough – when you go to work. It sounds like such a small thing, to stop acting for a short time. But it has a power that those who don’t go through life wearing this mask will never comprehend. How lucky they are.

Here’s to the performances, the intermissions, and most of all – those who make taking off the mask possible!

This post goes out with a special thanks to my amazing family and friends – thank you and I love you all so much! I could not fight this battle without you!

This is Winning.

Back in 2012 one of my best friends and I decided that 2013 was going to be our year. The previous few had pretty much sucked. Not that there weren’t good times or things to be thankful for, but we’d both been through a lot and we were really looking forward to a fabulous 2013. You know what they say about the best laid plans… Needless to say, 2013 didn’t turn out to be THE year. For either of us. Personally, I dealt with 4 surgeries, a failed business, a failed suicide attempt and a very tumultuous relationship. I wasn’t sorry to see it go. 2014, unfortunately, didn’t prove to be a whole lot better. Well – there was no suicide attempt so I guess that’s a pretty marked improvement lol.

Looking back over the last several years – I realize that I haven’t really had a life of my own. I really haven’t had much of a life. I have so much to be grateful for – my amazing family and friends and their seemingly endless support and encouragement. But it’s time for a change. Time to really start living.

uhaulI sit here, the night before New Year’s Eve 2014, and I AM READY. I’m ready for a lot of changes. I leave tomorrow to move 3000 miles from the comfort and support of my family back to Sacramento, back to an amazing group of friends whom I have missed SO much in the 11 years since I left CA. I have plans. Big plans. Maybe not in the same way that healthy people have big plans, but plenty for me. That’s the thing though, isn’t it? It’s not about how our lives measure up to others. It’s not about how much money we make (if any) compared to anyone else; it’s not about how nice our home is or what kinds of vacations we take or our job status – if any. It’s about setting goals for ourselves. Things we can actually achieve – or have a shot at. Even if it’s a long one. It’s about challenging ourselves. Some people are determined to get that big promotion this year. And that’s great. I am determined to find SOMETHING that I can do part time. And that’s enough for me. In fact, no, it’s not just enough – it’s HUGE. If I could go back to work in any capacity at any level – it would do more for my state of mind, my quality of life and my health and happiness than someone else’s huge promotion. It seems like a small thing to most – but to me it would mean a world of difference.

I have lots of goals like that. No need to bore you with them all here. The point is that January 1 isn’t just a time for resolutions you have little to no intention of keeping. It’s about reflecting on where you’ve been, how your life is going and what YOU can do to improve it. And to hell with the comparisons to everyone else. So get out there – set your goals – and go after them with all you’ve got. I might not have control over my migraines, but I have control over more than I have allowed myself to believe in a very long time. And this year I intend to take back the reins of my life. One way or another – this year will be a better year.

Happy New Year everyone!

Here’s to new beginnings, new goals and new-found strength!

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.”  

Saving my Baby

I write a lot about how much I love my animals and how much they do for me and how I would do anything for them. We all say that…”I would do anything for”…fill in the blank. The hard part comes when aren’t able to keep that promise. I love my munchkins so much it hurts. But reality is what it is. I have limitations – physical and otherwise.

One of my two cats, Piper, is really sick. She needs surgery. I’ve done everything I can do for her. I have worked with multiple vets who have been incredibly kind and generous. She is a fighter. She’s been getting by with supportive care longer than anyone expected. But she needs this surgery. Her pancreas is already incredibly compromised, as is her liver, and her kidneys will be next.

I have set up a fundraising Web site to try to raise the money for her surgery. I know that most people reading this blog are in tough physical and financial situations just like I am. I appreciate that. I know many of you depend on your furry friends just like I do. Or you have organizations devoted to promoting the healing power of the connection between humans and animals. Even the smallest gift would be immeasurably appreciated.

Please check out the Web site: Save Piper! and forward it to as many people as you can. The more people that see it, the better chance we have of raising the money that will save her life.

Thank you so much – from my heart and hers!

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.

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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