Your Story

With so many changes happening in my life right now, and so many unknowns, I keep this quote in my purse, on a crumbled piece of paper.

"The only thing standing between you and your goal is the bullshit story you keep telling yourself as to why you can't achieve it."

The story you tell yourself is the life you create. Make your story an empowering one.

War Stories

I'm having a hard time.

A hard, hard, beat the steering wheel with my fists, pace around my room, cry in the shower, doom-thinking hard time.

I don't know where I'm going with this post. I do not have a set goal. I did have set goals, originally. And then, especially, when I began to improve, my goal was to share how I was doing so. I began that when I posted about my vegan diet-which, is still helping, yes. However, what was a good, solid few months turned into a downward spiral, and I can't see the way out right now.

I'm kind of tired of statements such as "life isn't fair", and "this too shall pass." Alright, well it kind of sucks right now and I don't care if it will pass. In this very moment, I have things to do, I have a life to live, and I am tired of being plagued with this.

Tired. Tired is not even the word. I'm kind of losing my mind. No, no, I am definitely losing my mind. I don't know what it is about when I hit a difficult flare, but I tend to go into this "doom thinking" as I call it. Suddenly, the dreams and goals I had for myself seem so far away. I gasp for breathe as I cry over the thought of not being a therapist, a mommy, all of the things I've dreamed of.

I belong with people. I'm kind of good with people. It's one of the few things I'm good at. I don't know why this is happening. I don't know why, a month before graduation, something I have been working for for 3 years, I have hit an earth shattering flare. I feel trapped. I don't feel safe. I feel angry.

I had to speak to my supervisor today about the state of my health, as I missed several days of work last week and had to leave early today. She was understanding and kind, however there is one statement that she made that I can't quite shake. She told me that as a counselor, and as a woman, she had this intuition that there was "something else" going on with me, such as "a bad relationship or a chronic, underlying depression." I paused, partly shocked, partly offended, partly half dead anyway. I took it in. Then, it hit me.

"When I first became ill, many doctors did not know what was wrong with me. Two, specifically, told me I would not live through this. Every time I become ill, with any similar symptoms to that difficult time in my life, I remember their words, and I am afraid I will go back there, I am afraid I will die."

Yes, I said this to my boss.

Foot.In.Mouth.

Rather than regret that moment, I am proud of it. Don't let anyone tell you the pain inside you is from some deep, underlying depression. Don't let anyone make your pain out to be less than what it is. This is your body. This is your life. I own my words, I own my feelings, and I own my experience.

Today was quite a revelation. One I still have not completely wrapped my head around. But what I do know is this- I am stronger than I used to be. In the past, I would have taken her statement and let it be. Today, I defended myself. I told my story. I was vulnerable, I was open, I was..human. Completely, painfully, torturously human.

We all have a story. Don't let anyone dictate yours, or question what is behind your feelings. The world needs more people like you to share your story, so people know they are not alone. You are not alone. Wear your war story. Nothing good can come of this if it's never told.

Memories

I feel like I'm living more in my memories than I am in the present.

Something has happened to me in the past few years where I am finding it more difficult to live in the present. (Hm, I wonder what that something could be?)

I'm in the middle of a homeopathic treatment right now that, before it makes me better, must first make me worse. The ironic part of this (let's face it..as if the idea of getting worse before getting better isn't ironic enough) is that in my last post I spoke about the healing powers of the body and to have faith in its capabilities. Oh, do I need some faith. I will say this- I do, with all of my heart, believe in the amazing capabilities of the human body, and I truly do believe every pain I feel is my body's attempt to heal.

..but, you know what?

Reliving my worst hell over and over again is no picnic in the park. More like a trip to crazy land, where I pace around my room and cry, shake and sweat, call my Doctor, and text friends (Shannon and Candice in particular-hi girls) to ask them to remind me that I'm not actually dying.

At a time when I should be in the midst of creating the greatest memories of my life, I find myself living in the past. Last Sunday, Dave and I spent time with two of our friends who we have both known for years. I have been friends with both of them since I was a teenager-Meghan, since we were 12 and met figure skating, and Teddy, who I've known since I was 16, when he was my high school boyfriend's best friend. Oh, and now they're dating each other. Told you, my life is weird.

We were at Teddy's house, the boys watching the football game and Meghan and I pretending we cared, and Teddy, being the great host he is, continually offered me food and drinks..none of which I could eat. I felt like an alien imposter as I watched them whiz around the kitchen, heating up leftovers, popping popcorn, cracking open beers-none of which I have seen in months-some of these foods, in over a year. Nothing makes you feel more like a sick person than watching the normal people behave in their natural habitat, crunching on popcorn and drinking beer like it's the most normal thing in the world.

Well, I guess to them it is.

Seeing them sit there, attempting to pass me food which I had to politely decline repeatedly, made my heart ache. Not for the food, but for the life I left behind. A life where reaching for a favorite snack wouldn't always give me a stomachache, a life where every move wasn't calculated and considered. I looked at Meghan, smiling, talking, watching her sweet daughter play on the floor next to us, and I wondered when I got left behind.

Meghan and I, we skated together, literally side be side during practice. We'd spin around together, measuring our success by how well each of us mastered each move, knowing what we'd need to practice more based on who aced the spin or jump first. We entered college at the same time, continued to meet up and skate together on weekends, and then..the floor fell out beneath me, and it's kind of a blur how it all ended. I feel like her life, and the lives of those around me, have moved forward, forward, forward, while mine has crept forward, sometimes been thrown back, and I have crawled again, sometimes just to get back to the place I was in a few months before. I feel like while everyone around me is making memories, I am busy surviving.

I find myself each Christmas or birthday saying to myself "next year will be better, I will feel better next year". I was flaring so badly this Sunday, one week after spending time with friends, while Dave was over I was just completely losing my marbles. I was pacing in pain, crying as I tried to simply breathe, while I eeked out the words "just leave, just leave me here, please go live your life." I cried while I told him that I didn't think it would ever be over for me, that my life was standing still, asking him to please be friends with me when I'm still this sick years from now. He just looked at me, and I could see sadness in his face. He took a moment, the pause he took taking so long I managed to look up at him, when he said, "But, I believe in you."

Belief. Hope. It always comes back to this. And today, belief is someone believing in me. Maybe my memory isn't watching a football game with friends this Sunday, but it is of someone believing in me, wholeheartedly, with unwavering faith. And that is a memory that not just anyone can make. That is something created from hard work, from a life that has been built and worked for, from challenges coming forward and facing them head on. Maybe I didn't have a rockin night out with friends, but I do have someone-a few people, actually, that believe in me, and that is a memory to recall on the hardest of days. Maybe there's a lesson here..

The memories that matter in life are not wild nights out, but of the relationships you have created with people. The memories that you recall when you are old are of the love you share with those who are close with you-those tiny moments between just the two of you when you are both truly in a moment together, whether that is the moment I hear Shannon's voice on the phone, knowing she is completely with me in my pain, or the moment I see Dave's face change, knowing he actually wants to be in my presence during this dark hour, that I will recall when I am looking back on my life.

I can choose to push aside these moments as things that occurred during my "sick days", or I can take them for what they are- true care, sick day or not so sick day. Look for the love in each moment, look for the hope and take time to look at the faces of those who believe in you. The rest is just details.

Know Your Power

Nothing about this journey has been easy. In fact, if I were to pick a word to describe this process, "easy" would not be it. But, I would pick one of the words I already used- a "journey", a "process", and on some days "a trip to hell and back" (more than one word, I realize) would be a more fitting description. The words "journey" and "process" imply that this is something with a beginning and end. These words don't indicate when the journey will end and begin, how long it will take, how many setbacks there may be, and how many times one might give up before reaching their destination. Just- beginning, and end.

It can be extremely difficult to think of this process as something that has an end to it-especially for those of us who have a chronic illness and have the odds stacked against us. I'm not a Doctor of Medicine, or some kind of guru, but I am a person who has experience with chronic illness-I'd like at this point to consider myself a professional in regards to "Laura's Chronic Disease" (can I put that on my resume?). I may not have the credentials to write myself a Rx that can be legally filled at a regular pharmacy, but I've been in the thick of it- I've been brought to my knees from pain, cried enough tears I've soaked my pillow, and, in the past year, have completely changed my diet and supplements (no more Rx medications!! None. Zero) by doing my research, listening to my body, and knowing myself. Remember- YOU have more power than your Medical Doctor. That's right. You know your body. Nothing you report is strange, nothing. A medication bothering your stomach, a food making you dizzy, feeling tired after a full nights sleep-these things all have a reason tied to them, and the reason is not that you are crazy.

Your body is an amazing, complex mechanism. Although scientists and doctors have tried to understand it, there are some things that go on within the human body that just cannot be explained. The body's healing abilities and the complex process that goes into this- cells, plasma, oxygen, enzymes, minerals- is yet to be fully explained and understood. The human body was designed to heal itself. It will do anything in its power to do so in order to keep you happy and balanced. Sometimes, in its attempt to fix itself, we can feel ill. This is not because our body is not working right, or because it is disagreeable- it's because it is trying everything in its power to fix us, but sometimes does not have everything it needs to do so. No matter the disease- chronic inflammatory, chronic infection, cancer-the body is doing it's best to keep us balanced and is pulling from every which way to do so. It is our job to feed it what it needs (healthy foods with essential vitamins and minerals) and to hydrate with clean water so it can pull from this fuel to fight off its invaders (disease, toxins, allergens, infection). I realize this sounds simple, and I don't mean to downplay any of our diseases-they are real, debilitating, and some of them have been with us for the majority of our lives-but, although these diseases are complex, the reason behind them truly is simple- the body is trying, with all of its might, to heal you.

Think of it this way- when you break a bone, it heals. Sure, you can put that part of your body in a cast to protect it, but even if you didn't the bone would heal. It is still not known how the body does this. So many different mechanisms and processes go into it, it just cannot be explained. We do not need to sit there and tell it to heal. We do not need to take medications. And we don't lie awake at night worried it won't heal. Because we know it will. The body will find the broken part and fix it. Sure, an individual can set it back into place, but the actual bone can only heal with the body's work.

Here is an excerpt from one of my favorite books, "Quantum Healing" by Deepak Chopra:

"You cannot step into the same river twice, because the river is constantly being changed by new water rushing in. The same holds true for the body. All of us are much more like a river than anything frozen in time and space. If you could see your body as it really is, you would never see it the same way twice. Ninety-eight percent of the atoms in your body were not there a year ago. The skeleton that seems so solid was not there three months ago. Your skin is new every month. You have a new stomach lining every four days, with the actual surface cells that contact food being renewed every five minutes.."

Whew! Sounds like a lot of work. If your body can do all that, who are we to say we cannot heal completely? Let's give this temple of ours a little more credit.

You have the power to heal. You. Your bones, your heart, your cells. They are all rooting for you. So am I. Know your power. Healing is not just an option-with the right tools and a whole lot of patience, healing is inevitable.

**For a jump start on how to help your body heal, consider my favorite documentaries: A Beautiful Truth, Food Matters, & Forks Over Knives. These will be discussed in my next post and video, along with recipe suggestions and favorite foods and supplements.

A Beautiful Truth-

http://www.youtube.com/watch?v=wvzDHGLEUyw

New year, new insights

It's a new year, friends.

I have been meaning to post for a while, it has been quite a year. Due to diet changes and supplements, I have truly experienced some "good" days this year. And by good, I mean truly amazing, pain free days..days where I would look around me and think "This is it, this is what life can be. What a miraculous place this world can be." Tears would immediately form in my eyes. Yes, even on healthy days, I am still the girl who cries in public places.

This year brought many surprises. I met my best chronically ill friend (Shannon) in person, and worked for 7 months as a counselor at my clinical internship site. I am becoming a therapist, it is actually happening. It is very real. During that time, I had extreme ups and downs. Days where I felt so well I danced around my living room, and days where I felt so ill, I shook as I cried myself to sleep.

I still live in two worlds, but they look a bit different to me now. The ever-so-far away "normal" world was with me at times, but sick world would linger in the distance..like a dark, far away cloud. You can see it there, and you wonder if it will get close enough to touch you. You wonder if it will pass over without a storm, or if it will catch up to you and pour its rain and roaring thunder over you. Normal world, as beautiful as it is, doesn't quite look like how I remembered it. And, I don't think it will. I'm too aware of the sadness in the world now. I'm too aware of pain. But, I appreciate this knowledge. In fact, this knowledge may be what I was meant to see.

Right now, I'm in a sick period. And..I'm feeling a little hopeless. No matter how many little post it notes I leave to myself to remind me what it's like to feel well, to remind myself it's possible and that flares pass, I cannot believe it, even when I stare at the note and picture myself when I wrote it.

So today, since I cannot remember what it's like to feel well, I will choose to remember what changes this illness brought to my life and ways it has worked for me. Over the course of 7 months, I had several clients. Many with depression and anxiety, and some even with illness. I did not tell any of them of my illness, of course-therapy is about them. But, something interesting happened..something that took my breath away:

I have a client, let's call her Kate*. **Kate is a college nursing student who has suffered from a back injury for a few years now. The pain can be so debilitating she at times has questioned if she can finish school. We spent many hours in my office discussing the difficulty this brings her, emotionally and physically. I wrote notes to her professors if she missed class, explaining she is trying her best-I asked for extensions on papers, I advocated for her needs. At the end of the semester, in December, Kate showed up to my office. She looked bright and was smiling. "I did it, I did it!", she exclaimed, with sheer excitement. She reached out to hug me, pulled me in and whispered, "You get me. You really get me." When she pulled away, she held my arms and said, "You know what it's like, don't you? I know you must. The way you looked at me, I could tell you heard what I was saying. What do you have?"

She knew.

A few weeks ago I received an email from Kate. She had gotten her grades for the semester, and passed with flying colors. Kate stated that she could not have gotten through the semester without someone understanding her and advocating for her, and that what got her through her most painful days, was wanting to one day do what I was doing for her-understand and advocate for a patient in pain.

Your disease is not your destiny, friends. Make your pain your purpose.

Wishing you all a happy, HEALTHY 2012.

*Names will always be changed if speaking about a client

**I will only speak of clients who have granted me permission to mention them and their story, out of respect for confidentiality

This I believe is true..

Hello Friends.

It's been a while. I am sorry I have not posted for a while. I mentioned this in my videos, but I will mention it again here-the past few months have been the most emotional of my entire journey here with this illness. I have learned a lot. I have grown a lot. I have stumbled, fallen, hit rock bottom, risen, and fallen again. And somehow, I am here.

I plan to post and make videos about what has been helping me, as I seem to have found a few things that bring relief..and have spent every free moment of my time doing endless research on cures for disease.

Recently, a beloved member of the Chronically Ill Club, and a fellow friend and blogger passed away due to complications of Rheumatoid Arthritis. The news broke my heart into a million pieces..and propelled me further to fight for all of us, and all we deserve- better health care, more awareness, more options, more remedies, less side effects. (or um..how about no side effects? anyone..?) There is not much I know for sure. There is not much I can guarantee. And, just so you know..I do not make promises I cannot keep.

But I promise you this: I will find something to bring all of us relief. Real relief. Not a cover up for pain, but something that makes our cells and our souls dance. I promise you this. I promise with every broken cell, and every beat of my sometimes tired, sometimes overworked, sometimes tachycardic, but always hopeful heart I will find something.

In the meantime, I will focus on what I believe in.

I believe that illness is not a punishment, but rather, an opportunity-

It is an awakening. A time to learn who we are. A time to see our own strength. A time to explore who we were meant to be.

I believe that sometimes we have to be knocked off our feet, to be lead to our true destiny.

I believe that one second, one day, one month, one year-or ten, does not define who we are. At the end of our lives, people won’t remember what we were physically able to do, but how we made them feel.

I believe that true strength is not being strong every moment. I believe true strength is knowing it’s ok to let go.

I believe that true strength is not being strong every moment, but maintaining hope through years of struggle, and searching for answers when you’re told there are none.

And I believe in you. You, out there reading this right now. Your eyes are open, you are reading these words, and though it may hurt right now, you are alive. It is not over yet. You will be standing there with me when we find an answer for all of this. Do not give up now.

I'm not giving up on you. The doctors may have given up on you, your friends may have, your family..but I am not giving up. You don't need to believe there will be a cure. You don't need to believe in any particular God, or Spirit, or doctor, or medicine.

All you need to believe in is you. Belong to the religion of "you", the medicine of "you", the good in you.

I believe..

that one day, this all won't just be a "belief", but a reality.

Alone

** DISCLAIMER ** I felt the need to warn you that, unlike most of my posts, this one does not have a positive ending. I could not bring myself in this night to think of one. I feel the need to tell you this because I want to bring you up, and I do not want this to bring you down. I may take this down, but I feel its equally necessary to put up, because it reveals my raw emotion and shares how I truly feel in certain moments. It shows how utterly painful it can be to live with a chronic illness. I do apologize if this post upsets anyone, and I do want to say, I truly believe with all my heart, even after the night I just experienced that IT WILL GET BETTER. Thank you : )

It’s 5 am Saturday morning. I’ve just awoken from a not so deep slumber, in that incredible pain that as soon as it hits you, every cell in your body is aware of what it is and how long it will last.

It is in this moment that I realize I am alone. Completely and entirely alone. There is no one I can call on the phone right now, not a soul who would truly understand. Those who would, any of my sick friends, are hopefully sleeping right now, and I wouldn’t dare wake them from what may be the only night of real sleep they are getting this week. My room echoes with silence. Alone. Eerily alone. I look out the window, and everything is standing still. There isn’t even the slightest breeze. It’s like the entire world has stopped, and time is frozen as this pain surges through my body, mocking me as it strikes. It strikes harshly, unapologetically, making me feel like I deserve this moment that leaves me short. Just, short. Short of breath, short of hope, short of understanding.

Just when I thought I was making some progress, it hits. Sometimes I’m afraid to think these thoughts, afraid to think “this feels better than it did last week”, because as soon as it enters my mind, I’m afraid it will be taken away from me just as quickly, as if it’s a game, as if this thing inside of me is more aware of my own thoughts than I am. It’s watching me-my every move. It listens to my every thought. It knows the moment, the moment that I forget how bad it is, the moment I truly believe it’s getting better, the moment I let go of that crippling fear, release that unexplainable sorrow and just let myself breath-it finds its way in. It reminds me of who I am now. It reminds me of the life I wake up to. It reminds me its always here-watching, waiting, lurking beneath the surface. It reminds me of how far I’ve come and how very far I have to go.

This is the kind of pain that is beyond human understanding. I feel comfortable making a statement as bold as this when I’m in this kind of pain. I dare you to challenge me on that, normal human who may be reading this.

I was supposed to see a friend tonight that I have not seen in a while. This is the third time in a row I had to cancel on her, and I felt absolutely heartbroken over it. I truly desired to see her, and can push myself to great extents, but tonight was one of those nights where even pushing myself, even for 30 minutes, was completely out of the question and one of the few times I say “impossible”.

I called her to apologize for cancelling, my heart beating so loud out of my chest I could barely hear her phone ringing in my ear. She picked up, and in a monotone voice, accepted my cancellation. She didn’t seem surprised, nor very disappointed, but as if I was telling her I would be 5 minutes late, or, “it’s raining outside”. The lack of change in her voice struck me in the stomach, and I felt a slow burn inside. My face turned hot as I stumbled around my words, then I began to cry. I apologized to her over and over, and lost myself as I began to say “I hate this, I really hate this, I wish I could change it, I was trying really hard to be able to get out to see you tonight..” to which her cool replies of “Uh huh” only made me feel like I could collapse with grief.

When we hung up, I looked around my room, the silence swallowing me. I am twenty-five years old. I am standing in my childhood bedroom in my parent’s home and…

I don’t know if it’s going to get any better.

Stop, Stop Laura, I say to myself as I literally shake my head as if to shake the thought out. But, I can’t shake it. I can’t stop the what-if’s tonight. I can’t stop the reel of memories playing through my mind, like an old movie- a familiar one where I know the scenes, I recognize the characters, and as I watch them I ache about where the plot turns, knowing how bad it gets.

I never thought it would get this bad. Say it. Say it to yourself, Laura. Admit it. Just own it. I never thought it would get this bad.

Cut to 5 am. I stand, swaying in pain, clutching my blackberry in my hand, wondering who to call. I stare at my phone. No one. There is no one to call. I feel like a stowaway, stranded on a deserted island. This must be what it feels like, this aching, frightful feeling of being utterly alone. It must be something like being the only one on an island, knowing that no one can hear you. No one hears me. I am speaking but they don’t hear me. This is real. Don’t they understand? This is as real as it gets.

But they’re used to it. They’re used to my tears, used to me saying “this is the worst it’s ever been” or, “this reminds me of the time I was at my worst”, and they shake their heads, nod, all the while most likely thinking this will pass, knowing the pain will eventually die down to a level in which I can breathe, most likely believing I am overreacting-or worse, actually believing it is that bad, but settled in the belief that there is nothing they can do to help me. How would you like to live in this body? Don’t you understand, there’s no way out for me! When we hang up the phone, or when you eventually leave the room and go back to sleep or back to whatever you were doing in your life, I’m still here in this one. I can’t leave this. I can’t step away. I can’t blow off steam during a night with my friends. I am trapped in here and I’m screaming to get out. GET ME OUT OF HERE. My skin crawls as pain surges through my body. I want to rip it off, step out of it and be free. I feel like the air outside of this is clearer. I can’t breathe right now. The air is too thick. Too thick with despair.

Who can I call right now? No, really. Who can I call? I search my brain. Is there a hotline for this or something? Some on call therapist at 1-800-Therapist? They should consider having such a thing, by the way.

Who do I call?

Emergency? What would I say?

“Hello, 911? It’s an emergency. I’ve lost everything. I’ve lost my whole life and I can’t get back to it. My body is in incredible pain. The pain is taking over and I can hardly breathe, and I’m all alone. Can you help me? There’s no one I can talk to right now. No, it’s not really an emergency. It is but it isn’t. It is in that this pain to anyone who’s never felt it before would be an emergency. It’s not in that I have felt it before, been down that road, went to the emergency room several times, and there’s nothing anyone can do to help me. I just need someone to talk to. I just need a hand to squeeze. I just need someone to tell me it’s going to be okay and to actually believe it. Sometimes it’s hard to be a believer. I can’t be my own cheerleader right now. I need someone to come hold my hand and believe with every piece of them that it’s going to get better. I need you to help me right now. I don’t know if I can do this alone.”

But, I will not call that number. And I will not say those words.

5:30 am. Infomercials and silence. Does anyone out there feel this way? I pace around and try to picture who else might be feeling this way right now. I say a prayer for them as I hold my hand to my chest “please release their pain”. I send the thoughts out there, hoping that whatever warrior is awake with me at this time, feeling this pain, may find some relief. I am with you, whoever you are. You don’t know me but I’m with you and I’m thinking of you. Are you thinking of me? Together we are not alone. I wish I could reach out and touch you. I wish I could wrap my arms around you and tell you I literally feel your pain.

Why is it that everything feels so out of reach right now? The world feels so small, confined to this bedroom, yet so large that it swallows me whole, and I am left behind. I am not walking amongst the land of the living. Yet somehow, I’m not dead. I am here. In this in-between land. It’s lonely and deserted. I know there are people out there who live in this world too, but I cannot reach out and touch them, and I cannot hear their voices right now.

I feel like if I screamed right now, my voice would echo into the early morning. I’m able to sit down now. I lay down, place my head on my pillow. The pain is still there, I shiver with it while I sweat, but it has exhausted me to a point where I can lay. I pull the blanket over my head as I curl in the fetal position under it. I have the television on in the background, on the lowest volume, to feel like someone is here, to feel like there is still a world out there that I can join one day. I see the light of the television flicker above my blanket. My eyes can’t handle the light.

Flicker. Flicker. If I close my eyes, maybe I will wake up to realize this was all a dream. All of it. Please tell me this is just a dream.