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

Archive for the ‘Health’ 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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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 :)

My big accomplishment for the day ūüôā

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.

 

Hold On Pain Ends

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

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

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

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

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

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

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

Suicide won’t fix it.

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

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

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

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

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

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

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

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

And no matter how alone we might feel at the bottom of this pit Рwe 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.

We’re never really grown-ups.

When I was 4-years old I told my mother that I did not want to have any more birthdays. I wanted to stay 4 forever. (smart kid eh?) My mom told me she wished I could stay 4 forever too. I don’t know if I was just having a lot of fun, or if I had somehow picked up on the fact that life for grownups seemed a lot harder than anything I was interested in. Either way – something in me was telling me that where I was in that moment was a pretty darn nice place to be. I often think about that day and that wish and realize I was certainly wise beyond my years.

Growing up is tough. And it lasts a lot longer than we ever imagine. We’re always growing up. When you’re really little the high school-aged babysitter is a grown up. In high school the college kids are grown ups. In college those late 20s-early 30-somethings are grown up. It just keeps getting pushed back as we realize that the process of growing up has no end point. It is painful and joyous and hard and wonderful. It is full of goals – realized and missed; accomplishments, failures, love and loss. But most of all it is filled with lessons and knowledge and at some point, the wisdom of “old age.”

Like everyone, I have suffered through all kinds of heartache. The kind that comes from being hurt or betrayed by someone you love and trust. The kind that comes from hurting someone that you love Рhowever well-intentioned your actions or words might be. The kind that comes from separation,  breakups of all kind Рyour own or those of loved ones; the kind that comes from physical pain, and usually worst of all, that which accompanies death.

The worst of all pain seems to have a life of its own, attacking us in waves when you least expect it. I wonder sometimes if that is our minds pushing it back, holding it at bay, then struggling to work through it, which requires feeling it. Or perhaps it is God giving us small breaks to catch our breath, then washing over us only as much as we can truly handle, even when it feels as though we might drown. ¬†I’m sure I”ll never fully understand the way pain works. But it is something universal. Something we all experience, regardless of the different sources and degrees in which we all experience it.

The funny thing about pain, though, is that it is necessary. It shapes us. It strengthens us, even when in the moment, it feels as though it might break us. We come out stronger on the other side. And it doesn’t seem to matter what kind of pain it is. It could be physical pain, grief from losing a loved one, heartache from the painful end of a relationship. It fortifies us for the next round (and there is always a next round!). It transforms who we are into who we are becoming. I don’t know anyone, myself included, who doesn’t wish, beg, pray, scrape and claw through pain to make it end as quickly as possible. I don’t know anyone who attempts to prolong their own pain. At times, we experience things that seem impossible to overcome. It does not feel as though they will strengthen us, but instead be the end of us. Rarely is this actually the case. And at some point, we realize that today hurts a little less than yesterday. And a lot less than a few weeks ago. We reach a point when we can allow ourselves to think about the source of our pain with less trepidation and more fortitude. We grow – we grow through and because of pain.

I’m in a funny place in my life right now. My migraines are particularly problematic because I’m making my way through a month off of one of my medications whose side effects are so potentially harmful that every six months I have to come off of it for a full month and have CT scans done to ensure no damage has occurred from its use. At the same time I had my heart broken by someone I love very much. While I was completely overwhelmed when hit with these things, I see now that they are necessary. Necessary to keep me healthy, necessary for me to move forward, necessary for me to grow, and perhaps most importantly, necessary for me to get where I’m going and become the person I am meant to be, strong and able enough to do all the things I am destined to do.

In the moments when the physical pain is so severe I can hardly breath, or the waves of heartache that wash over me so overwhelming I think I might crumble beneath it all, it is difficult to stay positive. A few days ago I was angry. I was REALLY angry. But that got me no where. My relationship ended in a way that, in my opinion, did not honor what we had. I wish it could have ended differently, but it had to end. While dealing with this sudden loss I also had an overdue appointment with my neurologist. I drove to my appointment hoping that he would have some way of easing my migraine pain. Instead, he made a change that resulted in this month of increased pain. But this too is necessary. Anger doesn’t lessen what I feel. So once again I find myself grateful. Grateful for things that used to scare me, anger me, confuse me, confound and bewilder me. But even this pain is carrying me forward toward whatever the next big thing in my life might be.

Closing some of these doors allows me to find unexpected openings. I’m transitioning from some tough places/circumstances to a lot of unknowns and some dreams-come-true. Sure, I had my heart broken. But it’s OK. It reminds me that I’m alive. Feeling things so deeply – even heartache, can be inspiring. I can’t tell you how many times I’ve listened to Lady Antebellum sing the words “I’d rather hurt than feel nothing at all” and thought to myself – “not me!” But they’re right. It is strangely life-affirming to feel something so deeply, even if it hurts. It is equally wonderful to know, deep down, that like all else – these feelings are only temporary, and soon the pain will be replaced with joy equal in measure.

I have a confession…I secretly want to be a song writer. The one small problem with that – I have no musical ability what-so-ever! I can’t sing; can’t play any instruments and am pretty much tone-deaf. LOL. I do love to write though, and it’s amazing to imagine someone marrying what falls onto my paper with an amazing melody.¬†I also want to be a successful jeweler, a wildlife rehabilitator and educator. I have lots of dreams. It’s good to have places I want to go, things I want to do. And amazing to be well enough, some days, to make some progress.¬†Perhaps one of the doors that is closing in my life will open up to one of these dreams. When I look at it from that perspective, it is hard to resent the pain. And so much easier to embrace the change, appreciate where I am, wade through the tough days and look longingly forward to all that is to come. So here’s to life, with all of its twists and turns, pain and joy and wondrous possibilities!

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!

Recovering Plan-a-holic

I grew up a planner. I planned everything. Always. I had back up plans. I had backup plans for my backup plans. I did this from the time I was a little kid until I was an adult…sitting amidst the ruins of years worth of failed plans. Then I realized, life simply can’t be planned…at least not in any long-term fashion. (SHOCKER – I know! – well at least now you can’t say I never taught you anything!) One more important matter – it never pays to get attached to our plans.

There is a wonderful Chinese proverb that states that “To enjoy the life we deserve, we must first let go of the one we planned.” I used to read that saying every week while sitting in the waiting room of my therapist’s office. I would recite it over and over until I felt like I could MAYBE start¬†doing¬†it rather than just reading it. That went a little something like this…

“Ok, so I’m not married to my college sweetheart. And we don’t have a cute house in a great neighborhood. Our home isn’t filled with two kids (Jacob and Kiley) and our two dogs – Nala (our German Shepherd) and Tucker (our Golden) – in ¬† ¬† ¬† ¬† ¬† addition to Piper and Chloe, of course. Instead, I’m 34, never married, not dating anyone, no kids and no dogs. And never owned a home. Drifting between the homes of friends and family while still waging a war against my own body and fighting desperately for social security disability.”

Eh – no problem – that other life, the one I had planned in absurd detail – it probably wouldn’t have been so great anyway. Ok – so it’s still hard sometimes not to at least wonder about that life. But here’s what’s more important, and more exciting. This life – the actual day-to-day real one that I never planned and often don’t know if I can handle – this one is full of undiscovered potential. Yes, that’s right I said POTENTIAL. And if you think it’s tough to imagine loads of potential while huddled in a painful ball in a dark, silent room…you’re sometimes right. But practice really does make perfect. And I’m getting there. I might not have all the things I imagined I would at this stage of my life. But I have a great deal more strength and resilience and faith than I ever would have if things had just gone according to plan. So I am hopeful and optimistic, and yes, even grateful. Not for losing the man I loved, but for the ways this life has tested me and fortified me. And for all the possibilities that remain.

Speaking of possibilities – this week has brought a firestorm of opportunity (and challenge). I learned that our request for an expedited Social Security Disability Hearing had been approved and that it will take place tomorrow at 2 pm. From the time I learned this until…well, earlier tonight, I have prepared and planned and stressed and planned some more. I have been frustrated with my attorney who, in my estimation has not done nearly enough of any of those things. But I sit here now and I realize – I can’t plan or stress tomorrow into being successful. Yes, preparation is needed. But I went far beyond preparation. I was looking for something that does not exist. I wanted a guarantee. And my hearing tomorrow, as with all things in life – comes with no guarantee. So I will go in as prepared as I can. I will let go of all the planning and the resentment toward my attorney. I must simply accept that he knows how to do his job better than I do.

I will either win the appeal or not. But it will all happen one step at a time. I’ll finish this post. I’ll relax and spend time with my mom and step-dad and cuddle with my cats. I’ll (hopefully) get a good night’s rest. I’ll get up and take tomorrow, similarly, one step at a time. Then, after putting one foot in front of the other through this incredibly important day, my hearing will be over. And both my lawyer and I will have done all we can do until the judge renders a decision. And I am (almost alarmingly so) at peace with that.

I spoke with a friend earlier tonight. He questioned me about what I will do if the judge rules against me. Fighting everything in me that yearns to plan for every contingency….I simply said, “I don’t know. I will cross that bridge when..IF…I come to it.” I smiled, pleased with myself. I must be doing something right. I’ve apparently learned a lesson somewhere along the way. And in this particular moment, it appears that my energy could be put to far better use than planning that which cannot be planned! If you don’t believe me…just as Chloe…

International cat sign for “GET OFF THE COMPUTER AND PAY ATTENTION TO ME!”

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