Monday, June 13, 2011

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 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.

Sunday, January 23, 2011


** 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.

Friday, January 21, 2011

Waiting for Spring

A few days ago we had a blizzard here. We had warning of it for about a week. It slowly went from the weather man having his typical 3 minute time slot on the 5 o’clock news to the night before, hours and hours of news anchors talking, the governor coming on the television to talk about a state of emergency, and many “experts” talking about how to keep safe during a blizzard.

In about 14 hours, we received 29 inches of snow. And everyone lived to tell the tale. Yet, for days before the storm, and especially the night before, everywhere you turned everyone was freaking out about the storm. People were posting on facebook about going to the grocery store to stock up on food, the news was interviewing people about how to stay safe, warning residents to stay off the roads, and to be prepared to lose electricity. Everyone was bracing for this storm, and seemed afraid that they may not be okay. Like somehow, they would run out of food, or would be trapped in their houses forever.

As I heard and saw everyone whooshing around me in a panic, I couldn’t help but think- seriously?!?!

It’s funny, I really do not consider myself to be a calm person, as I do not ever hesitate to admit. As much as after some time I see the bright side of a situation, think positive, and hope for the best, usually I will think of the worst case scenario first. Find me a situation, and I can tell you what can go wrong. But, I was calm. I was pretty sure there was enough food in the house to last me a few days, and in the end, I knew I’d eventually get out. Worst case scenario? Well, eventually, snow melts, so there is no way I will be stuck in here forever.

And that’s when I realized: I’m making it through my storm. Yep. This storm that was coming, everyone had warning of it. But, when the blizzard of chronic illness came into our lives, did we have warning? Did we have the news telling us how to prepare?

Had I known this was coming, had I had the internet, the television, and any person I had come in contact with the day before tell me that my world was about the end the next day- I would have gone to the grocery store to get the soft food, the only food I’d be able to eat for three months. I would have had something really tasty for dinner that night too, let me tell ya. I would have made sure someone would be there in the morning to help pick me up off the floor. I’d make sure someone would be there for the next 3 months to help me shower. I’d let them know what I can eat. I’d have my medications ready. There wouldn’t be trial and error. There wouldn’t be allergic reactions. Had I known the day before, heck, the week before, I would have gone to every doctor in the state and banged down there door. I would find answers to cut through the months (heck, years) of confusion and fright. I would let me friends know that things are going to change, and I’d ask them not to leave me. I’d tell everyone that I love them, and apologize for having to leave their life for a little while. I would have packed up my dorm room, said goodbye to my roomates, thank my professors for their inspiration. I’d tell them I’d be back one day. I’d close chapters on places and relationships. I’d RUN for the last time. I’d visit the places and people I love. I’d cash that paycheck and go shopping. I’d put a pillow on the bathroom floor, ready for that morning. I’d say my prayers that night..just like I did so long ago, but this time, I’d tell God I’m ready, ready as I’ll ever be, and I’d ask him to help me through. I would PREPARE.

But, we didn’t get to prepare. We were thrown into this blind and had to feel our way through. There was much trial and error. A lot of fear and confusion. Too much heartbreak to speak of, too much loss to have ever imagined.

But here’s the thing-we’re still here. We made it. And yes, maybe we’re still in the storm, but we’re more prepared now. Even if we still don’t have all the answers, we’ve found our own answers, and we’re still searching for them. And even better, we still have the chance to. It’s not too late! It’s still snowing, but we’re not buried yet. There is still a way out. There will always be something new to try. And even if it continues to snow, sometimes heavier than others, we know how to make it through. Even if making it through is laying in bed, at our worst, crying and wondering why, we get through it. There is an amount of time that goes by, and we wake up, and we are a little stronger. We look outside and the day is a little brighter. We are reminded that the sun rises, the seasons change. Snow turns to water, the water feeds the grass, and the flowers bloom. It’s still snowing there, but I feel the suns power. The suns power being, our will to go on. Our shared hope. It powers the sun, gives it light and heat, and melts the snow. I know there’s still snow on the ground, but I also know that there is grass under there, and flowers that are waiting to bloom.

Each of you are a flower in the garden that is waiting to bloom. I’ve heard that the darkest winters bring the brightest Springs.

I’ve also heard that April showers bring May flowers.

Well, I say- years of sorrow plant the seeds that grow gardens of peace.

May you find yours.

Sunday, January 16, 2011

Keep Dreaming

Something strange happened today.

Let me rephrase that. When you live with a Chronic Illness, something strange happens everyday. So, how about-let me tell you about the strange thing that happened today.


Tomorrow is the first day of my Spring semester back to school (whew, that will be another blog in itself), so to prepare, I want to look healthy. “Healthy” to me, considering I can’t do much to control my undereye circles (no really, I’ve tried everything-and if any of you have found something that works, please share your valuable information) my uneven skin tone from lack of sleep and random allergic reactions to foods and medications, my sunken in skin from rapid weight loss-but, I can control some things. I am going to use all my energy to curl my hair tonight. I will put on my organic paraben free sunless tanner (don’t laugh), and make sure to put on makeup tomorrow. Another thing I will do? Get my eyebrows waxed and shaped.

Which leads me to the beginning of this story. I was laying on the table as some stranger poured hot wax on my face (nothing about this is normal) when I heard a familiar voice out in the room where women were getting manicures. It was the voice (alright, an obnoxious voice-how else would I be able to recognize it after all these years?) of a girl I went to high school with. She was chatting away, every other word saying “my husband” this and “my husband” that..and I couldn’t help but think..”Shit, someone married YOU?”

And suddenly, as she talked about saving money for the trip her husband and her will be taking this summer, I felt my face begin to get hot-and not from wax-but from the sadness flowing into my face, and tears coming to my eyes. I felt my eyes water, and tears almost flowed down my face (add Lina’s salon on “the list of public places Laura has cried in”). Suddenly my thoughts were bombarded with “Will anyone ever want to marry me?” And no, not in the way every girl thinks it, but in the way someone with a chronic illness thinks it. Someone who considers themselves a burden. Someone who may be too sick to work. Someone who, at times, cannot dress themselves, shower themselves, or even feed themselves. Who would want to take this on? The hard reality hit, and as soon as the woman was done ripping stray hairs off my face, I booked it to my car. I decided to take the long way home. But I heard a love song that made me wish someone felt that way about me..and decided taking the long way was a mistake. Okay. Time to go home.

I walked in the door to see many items sprawled across the kitchen table, my mother’s face lighting up as I walk through the door. “Grandma wanted you to have these!” she exclaimed, as she held up my favorite blue and white China.

Is this a joke?

No, really. I am asking you-Is this a joke? This is one of those moments you wish a camera was on you so you can turn to it and make a face of disbelief, or turn to someone else who knows what kind of day you’ve had and the thoughts that are going through your head so you can say, “Really?!”

I felt a lump gather in my throat, and I couldn’t speak. Grandma’s house is being cleaned out by her children now. It was decided that she will be staying in the nursing home. I simply cannot clean out Grandma’s home, I just cannot. It’s like giving up. It’s like accepting she will never go back there. It’s like accepting I will never walk in to her house and smell her sauce, like I will never go into her room and smell her perfume. These are things I cannot, and will not accept. No.

My mom handed me a tray my Grandmother kept on her dresser. My heart broke into a million pieces as she handed over the beautiful tray that held her necklaces and perfume. No words could be said. This means more than words that exist in this world.

I brought the tray up to my room and sat on the floor against my bed. I hugged the tray, then ran my fingers over it. I closed my eyes and pictured myself as a child, going into Grandma’s room and putting on her necklaces and perfume. I would twirl around and pretend I was a grown up. I would comb my hair with her brush, and admire myself in the mirror. I couldn’t wait to grow up and be like her. This tray held my childhood. It held my dreams. It held the items that layed on the precious woman that now lays in a hospital bed. It held the items I used to place on my small body and whisper wishes and dreams to myself as I danced around.

Oh Grandma, I want to make you proud. I want to use that China to serve food to my family during special occasions. I want this tray to hold my necklaces I would put on before work, before going to a friend’s birthday party-and, on the day of my wedding. But will this ever happen? Will those dreams I had as a child ever come true? Or will they slip away. I can’t run fast enough to catch them, Grandma. I feel like they are slipping away from me and I can’t keep up. But I am trying so hard. I want my children to come into my room and put on my necklaces. I want to tell them about you. I want to pass on to them the things you taught me-things that sometimes you didn’t even speak, but just taught me by living and being who you are.

I picture that little girl in my Grandmother’s room. I want to reach out and hug her and tell her I’m sorry. I am sorry I may not be able to give you your dreams. I am sorry that something is going to happen to you one day-something that right now you cannot even imagine. It will steal your health, but it will not steal your soul. Please don’t think it’s your fault. Please keep dreaming, little girl.

Please keep dreaming. This is what I would tell her. Is this what I should be telling myself now, too? Please keep dreaming.

That’s what Grandma would tell me. And as much as I wish I could run to her now and cry to her and tell her all my fears-I know I can’t. She is too sick for that now. But I have in my head and my heart the things she would say to me, and that helps me go on.

Will I ever be able to teach my children these lessons? Will I have children? Will there be someone to love me, love me so completely that he takes me with this illness, even on the worst days?


Grandma’s life wasn’t easy. She, like me, had several ovarian cysts in her twenties that caused a lot of pain (it is thought now that, like me, she had endometriosis, but back then they didn’t test for it or know much about it). She wanted many children, and had three miscarriages (and 3 children, successfully) before she had a total hysterectomy at the age of 30. She was diagnosed with arthritis in her late 20’s, a rare form that is depilitatingly painful. I never heard her complaining, though. And, her husband-oh he loved her, he loved her so much. She still tells stories about the two of them and their life together. Theirs is a true love story. And back then, by today’s standards-Grandma was sick. Chronically sick. So, these life lessons Grandma taught me and displayed-is it possible they came from the knowledge of what it means to suffer?

Let’s face it- I would not be the person I am today had I not known illness. I would not have these “lessons” I want to teach my children had I not experienced such pain and come to such an understanding of life, love, and the human spirit. Maybe that little girl in Grandma’s room really did get her dreams-and maybe she will even get all of them. That little girl wanted to be like Grandma. Well, in a lot of ways, I am. That little girl wanted to teach her children life lessons-well, I was given these lessons, from Grandma, and from my own life experience. I keep a journal of quotes for my children to read one day, I keep letters that I write to my future daughter to help her through heartache, and those painful questions about life that keep you up at night. I didn’t start writing these until I became sick. I would not have been able to write these unless I became sick.

These dreams are indeed coming to me, I just had to look a little deeper to see them. And as I look at my own reflection in Grandma’s jewelry tray, I smile at myself, for a split second seeing the tiny face of little me from so long ago. Keep dreaming, I say to her.

Keep dreaming.

It will come to you.