Like a sunset in the sky you distract me from my fears

A daughter needs a mom to remind her, on bad days, that she is not alone.

A daughter needs a mom...

     to carry her when she is tired.

     to show her the comfort of a warm embrace.

     to sing her to sleep.

     to teach her to laugh at herself.

A daughter needs a mom..

     to tell her that the road to happiness is not always straight.

     to explain that the sweetest flower may not always be the pretties.

     to instill patience in her.

A daughter needs a mom because without her she will have less in her life than she deserves.
- Gregory E. Lang

"To Lindsay, (my beautiful, intelligent, talented... daughter), you mean the world to me. Always dream big and remember why a daughter needs a Mom.
                 Your Mom (where you inherited everything from...)- Christmas 2005"

My mother has been the greatest inspiration in my life. She alone is the reason I have been able to come so far in life and have been given the opportunities that I have. My mother saw the potential inside me and pushed me to excel, teaching me never to settle for second best. We are so much alike that we constantly were butting heads while I was growing up. This lead to a lot of fights. But honestly, who can say that they didn't fight with their parents growing up. It's a rule that every child should do the opposite of what their parents tell them too :). It wasn't until after I moved out that my mom and I began to see how much we really needed one another.

When I first started living on my own I thought that I would be lost. I soon realized that my mom had been preparing me for this moment my whole life. There was a reason she raised me to be an independent individual. She knew there would be a time when I would have to step into the world and live my own life. I couldn't have been more ready and I owe it all to her. It was then that I knew for certain my mother was, and always had been, my best friend. She was there for me when I needed her. I would literally cry to my mom and she always knew exactly what I needed to hear. She comforted me when I had my first breakup, telling me it wasn't the end of the world, and he wasn't good enough for me anyways. She was there when I got my first bad grade on a test in college, telling me to suck it up and study harder ;), saying it was just a fluke and everyone gets at least one bad exam grade so not to worry or stress over it. If you know me at all, I am a complete nut case when it comes to grades and I only settle for absolute perfection. But through it all my mother taught me patience. She taught me to take things as they come, and if something doesn't work out it was for the best and was never meant to be.

Growing up, I watched my mother raise my brother and I on her own while working full time and going to school to get her teaching degree. In my eyes she never struggled. I'm not naive to think it wasn't hard for her, but she didn't let us know if she was worried or if things were difficult. She always showed such strength and determination and I hoped that I would become half the person she is. I remember staring at my mother, knowing she was the most beautiful being I have ever seen. I would watch her put on make up or get dressed every day, and when she didn't know it, I would sneak into her closet and try on all of her clothes, especially her shoes. I wanted, and still want to this day, to be everything my mother is. There is a framed picture I keep of my mother that I look at every day. It's a simple picture of her posing with her hands on her hips leaning against a car. It's the simplicity and ease in which my mother shows with no effort at all that makes it my favorite picture. Without even trying she managed to look absolutely astonishing. Whenever I miss her or if I am stressed, and a hundred phone calls a day just aren't cutting it (and believe me we really do talk to each other that many times a day), I look at this photograph and remember it is all worth it. I tell myself if my mom can do it, then so can I.

My mother is the greatest inspiration in my life and I hope that with all my accomplishments, and those still to come, my mom will be proud of me. I wish that one day she will be able to talk about me with such pride and admiration, showing me off, and telling everyone around her that I am her daughter. And when she does this, I hope she knows that she is the reason I have become such a great person. I want her to know that if I didn't have her in my life as my mother I would have never become the strong individual I am today.I owe it all to her. (Mom, this also means that if I become a horrible person or mask murderer it essentially is your fault too ha ha.) But in all seriousness, I want people to compliment my mother and tell her how much of a wonderful job she did raising me because she deserves it. I love you Mom

-Always and forever your Binny Nell (Binners)

If I had everything would I still want to be alive

"Somewhere she is on the streets

Trying to make things better

Praying to God and breathing deep

Gotta break this long obsession

The look on her face, a waste of time

She won't let go, gonna roll the dice

Losing her grace, starts to cry

I feel her pain when I look in her"

- Buckcherry

I started with the intention of only telling a story about my illness. I've now come to realize that one simply can not just write one story. You have to incorporate other points, or instances, in your life to show how you may have come to a certain conclusion; why you have the viewpoint you do when confronted with a topic. I can't just tell you I'm sick and go from there. Past experiences make me reflect on situations in different ways. I base my conclusions on things that happened before and it's going to change how I perceive things after. 

I've become a completely different person in the last few years. I would like to be able to tell you that I have grown, matured, but that would just be trying to flatter myself. What I have truly become is a person who is paranoid, obsessed, jealous, and depressed. I managed to lose the carefree personality that I once held. This all came from wanting more than life has to offer. I have too many questions that will forever go unanswered and as a result I have become obsessed. My mind is on a constant repeat. It never slows down and it never stops for anything. This is what drives me, the need to know all, the need for "why". If I could slow it down then maybe I wouldn't have such difficulty in keeping people close to me. Instead, I push them away with paranoia. 

Being sick only escalated my quirks. I was given an infinite amount of time to sit and think about everything and anything. I had more time to imagine and visualize outcomes and look deeper into my questions. I am looking to writing as a way to release this pent up obsession. I hope it will keep my mind busy enough that I will allow the little things, so minuscule, to slip through the cracks, in turn, making me function slightly better. If there even is such a thing as functioning properly. Who decides what is proper anyways? <-- See, it's a never ending cycle. I'm never satisfied. It can never, and will never, be simple for me. Complicating is a way of life. Things that should not have even been given a second glance are dissected on the table until absolutely nothing can be further extracted, until I feel I am satisfied with the result. Will I ever be truly satisfied though, or should I learn to settle. . .

I love the way you lie

"It's so hard to forget pain, but it's even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace." 

I understand that what doesn't kill you only makes you stronger, but when do you get to the point where you don't have to worry about something killing you. Is there ever a time in our lives that we live for the moment, not worrying about what is going to happen or what may have happened in the past. I think I have become as strong as one can be when it comes down to it. I'm tired of going through something and coming out the other side alive only to find myself alone or more afraid than I was to begin with. This accounts for any situation, whether it be an illness, relationships, family, friends. What worries me the most, besides being ill, is being alone. I know I am young and have the rest of my life to find the right person to be with, but I look around and see others that are happy. Others, younger than me, who have already found the one. I don't want to put my heart and soul into something that is going to end up destroying a piece of me. I say that I don't want to do that, but I always do. I fight tooth and nail for what I want. I may not always show it in the most desirable way but I am committed one hundred percent. That is my downfall. I give myself to someone too much and I stop living my own life. I become wrapped in their lives, I forget that I had a life before them. I think people tend to forget that while making someone else happy is important, it is also required that you make yourself happy in the process. Otherwise, more often than not, it will never work. So I ask myself this, when does my road come to a dead end and I find the happiness that I strive for? When does the disease go away, when do I find someone that will never break my heart? I've been feeling upset lately for various reasons and I think I would be better if I didn't have so many questions. I want an answer for everything, every detail of why. I have yet to realize that there aren't always answers for the questions you seek. Some times it is what it is. People fall out of love, people get sick for no reason. Shit happens. I just wish I didn't kill myself stressing over it, allowing something that may be so insignificant to pick at my brain until the insanity sets in and I explode. Maybe some day I will learn the truth of why things happen when they do. Through everything there is one thing I notice. People dwell on the bad things more than the good. We, or maybe it's just me, never remember the good times that happened. Or we try too but so many bad things out weigh the good, making it unbearable. I try to remember the happy moments, but then I realize what I am going to be missing once thier gone. Maybe it's better that we don't have scars to show from the happiness, because then we can't miss what we hardly remember.

And the beat goes on..

 For a long time it had seemed to me that life was about to begin - real life.  But there was always some obstacle in the way.  Something to be got through first, some unfinished business, time still to be served, a debt to be paid.  Then life would begin.  At last it dawned on me that these obstacles were my life. ~ Fr. Alfred D'Souza

A year ago I would begin the fight in what would become the biggest obstacle, to date, in my twenty three years of life. A year ago, almost to the exact date, I went to see my first neurologist, his name is Dr. Horace Noland. On any other occasion this would have been my life's dream. I have wanted to be a neurologist/neurosurgeon for over ten years. Events that occurred during my childhood gave me a respect for medicine that no normal child at the age of nine or ten should have. I should have been dreaming of becoming a dancer or just a doctor, not a neurosurgeon. I should not have even known what a neurologist was at that age, but I did. While growing up I lost two important people in my life and I watched my mother struggle with migraines (which is where I got to meet an amazing neurologist that was a woman and was another reason I wanted to become a neurologist). I watched doctors screw up for one of the individuals and I vowed to never be like them. I made a promise to myself and to family members that I would become a great doctor and that something like that would never happen to another family, no one would have to suffer like we did. I also watched doctors do everything in their power to save another family member. A family member that raised me from birth, she was the closest person to me and she will never get to see me succeed. While she was sick with cancer I promised her that I would find a cure, I knew that it would be too late to save her but at least I could save others in her memory. Again I was making a promise to never let something like this happen to another family. I know I was young and it was just a child's promise and my grandmother probably knew that, but it is more than that to me. It's a chance to do this for her, for my uncle, for everyone who has lost a loved one, everyone who has suffered. It is something I am still going to do, except now it will just take me a little longer since I have a few obstacles in my way that I have to get through first. 

There must be a reason for it, a reason for why I am going through this at this point in time. This disease stopped me from entering medical school on time, now I have to wait a year until I am positive I can make it through classes. But back to the topic of discussion. Upon entering the Center for Neuroscience, I should have been awe-inspired and drooling over the thought that I was in a realm that one day I hoped to be a part of. Instead, I was terrified, scared for my life. That previous week I had spent a few days in Tucson Medical Center for various symptoms. The reason for this was because I had spent that summer fighting off random flu's and other symptoms that we couldn't diagnose. I was starting to have sharp alternating shooting and stabbing pains in my legs. It would occasionally travel to my arms, then back to my legs. I was also suffering from migraines that were so intense they had me lying on the floor curled up in a ball. Before going to the Center for Neuroscience, I went to my primary located in Gilbert, Arizona and they ran a full body MRI which showed nothing. My primary's response was that it was all in my head and she wasn't going to do anything about it, which is why I ended up going to the emergency room in Tucson. The pain had become so intense. I hadn't slept in at least a week and I was hoping for some kind of relief. At the the hospital, the on call doctors weren't sure what to do. They conducted a series of tests and recommended a neurologist. I saw him the next morning and he prescribed a few medications to get me through the days until he could make an appointment to see me. I made an appointment with Dr. Noland in the Center for Neuroscience and this is where my real story begins. . .

My first visit with Dr. Noland was more a follow-up from the hospital and sort of an evaluation. He asked me about my history, family history, symptoms, pain; where, when, how intense, he asked me if my diet changed, if I had traveled, all sorts of questions to narrow it down. Before the visit was over, I was scheduled for another set of MRI's of my brain, back, and legs, and a spinal tap and some blood tests. The spinal tap revealed high protein levels but Noland didn't see any concern in that. The blood tests revealed I have liver disease, a blood disease, and low b12. The low b12 was also diagnosed at TMC. I was told that I would have to give myself shots of b12 every day for a couple weeks, then every week for a month, then every other week for a while, and then at least once a month for the rest of my life. I still have to do that to this day. The brain MRI was clean and so were the leg MRI's. My spinal MRI showed a bulge and scoliosis along with a few other complications. Again, Noland dismissed this saying the bulge wouldn't cause fluid or any thing else that would disrupt my neurons and electrical signals causing my legs to convulse (which they had started to do). He prescribed more medication hoping one of them would help. I took them home and tried each medication out. It only seemed to get worst. I started waking up screaming from pain, and as time went on my legs would start to seizure and there were even days where I couldn't walk. I had a few instances where I was in the shower, or out to dinner, and my legs gave out completely and stopped working. It was hard for me to understand what was going on with me and why. It got to the point where I could not walk at all for a series of months, I would be able to walk for five minutes or hop to the bathroom but I couldn't go out of the house. The medication wasn't working. Noland prescribed more medication. It got to the point that I was on fifteen to twenty different types of medication at one time. My emotions were all over the place. I became depressed from not walking, from not having answers, from not knowing what was going on. I was upset because my life was on hold and there was nothing anyone could do. Over an eight month period I was put on and off various drugs including steriods, which are not recommended for someone my age or in my condition, but Dr. Noland was down to his last wit. I was taking at least five anti-convulsions, three different narcotics to control pain. two different muscle relaxers, two anti-depressants, migraine medication, and a number of other drugs. We ran more tests including EMG's (which hurt). It is a process where they stick needles into your muscles and move them around. The technician then shocks you by sending electrodes through your nerves. It feels like you are being electricuted over and over again. The worst part is they warn you right before they do each shock. I don't know if I would rather be warned or not. At least you aren't anticipating pain if you aren't told when it is going to come. I had to go through this torture three different times. It's not something I would want anyone to have to go through. I was told by the nurse that she has had patients that don't even feel it. I don't know how much I believe of that. I was crying more than I have ever cried. The pain was worst than my legs and back put together but maybe because it was then and there, it was so intense. As if it was a recurring theme, all three of my EMG's showed nothing. Every test thus far was negative for everything. It looked as though I was a healthy 23 year old and there was no logical reason for why I was in so much pain and experiencing seizures. I was then put on stress tests and I had other blood tests ran. Noland was even desperate enough to do another spinal tap. That was my second spinal tap in under three months. They aren't the most fun to go through either. Having a long needle go into your spine while they ask you to curl up in a ball, not exactly what I would call a fun day. The reason for the second test was to see if I had MS multiple sclerosis. Noland wasn't sure of it, he didn't think I did but my symptoms were just too close to be positive. And of course it too came back negative and so did another brain MRI and CT SCAN that he decided I also needed. Imagine the amount of radiation I have been through in the past year, if that doesn't kill me I don't know what will.

Over the next couple months I was put on more experimental drugs, and as expected nothing was working. I was in more pain then ever, Noland was going insane over not having any answers. My mother finally made the decision to take me to the Mayo Clinic. They are a renown clinic that are known for being the best of the best, and the most expensive and priciest. It was a last resort. We had to make an appointment three months ahead of time. It was ridiculous. We had even tried to drive down there and go the emergency room, but because we didn't have an appointment we were sent away. They said I had done everything at the other hospitals that an emergency room could do and the only way to get any further testing is to get an appointment. What a crappy way to start out at a high end clinic. So I went to stay with my mother for a few days and then headed back to Tucson and back to Dr. Noland to see if he had any more ideas. He became my backbone through all this. It didn't matter that he couldn't find answers, wait that is a lie. I went through periods where I would cry and blame him and ask myself and my mother why he could not find anything wrong or why he was giving up. But now that I look back at it, I realize he did and is still doing everything he could for me like I am his own daughter. We have each others phone numbers and we text one another all the time. He calls to see how I am doing. He emails me. He has even gone the extreme and seen me for free because of an insurance issue which I will go into in later blogs. Dr. Noland has been an amazing doctor and I know I have complained about him more often then not but he has been there for me for the past year, he didn't give up like Mayo or like my primary. He tells me that he knows something is wrong, and that's probably not what I want to hear, but he feels like he can find the answers or that we will find the answers. Since I got a little off track I will end there. My next blog will be about my experiences at the Mayo Clinic and I will tell you why I personally will never go back there again.

I never asked the spotlight to shine upon me

- The following insert is something I composed a long time ago. It conveniently fits what I am going through even though it's been years since I wrote it, so I decided to revise a few things in order to make it apply to my present situation.

"It's that sense of touch. I think we miss that touch so much, that we crash into each other, just so we can feel something."

I wanted to put a quote up that meant something to me. From the moment that I saw this, something hit me; a sense of realization, almost like I wanted it to solve my problems- almost like it would solve my problems. Let me explain.

Plain and simple: Life is hard-wear a helmet (an extra duty one if the occasion calls for), and keep those you love close to you. As living beings, we have been given the power of adaptation; the ability to accustom ones self to a presented environment through changes. Within the past year, I have faced one of the greatest obstacles that one can endure. It required a great change on my part, on my life, my family and friends, and my future. It made even the simplest task, such as waking up each day, excruciating. But through strive and determination, it was accomplished day in and day out. I was not going to let it consume my life. I have a spinal disease known as Monophasic Viral Myelitis. Or at least that is what the doctors are calling it for medical purposes. In all honesty, they have absolutely no clue what is wrong with me ( I will go into every detail of the worst year of my life in a later blog, this blog is just an insight). As if having a spinal disease isn't enough already, during my tests to solve this problem, we discovered that I have a rare blood disorder and liver disease. I am only twenty three years old and have already gone through more than any individual my own age or even older for that matter. I have never fought so hard for my life as I have for the previous year. I've been in the worst pain imaginable to human; pains such as seizures, convulsions, blackout migraines and so much more.

I believe that one can never truly be rid of pain. It’s something that we must live with everyday; it’s the definition of life. Without hardships, we have nothing to test us, or push us to our limits. Everyone falls down at one point or another. It is through these downfalls, that you look up to see who is willing the bare the weight with you. Is it a relative, or possibly a close friend- it depends. I found my true angels in waiting, they are the most amazing people that any one person will meet and if you have the fortune of getting to know them, never doubt their friendship. They are the backbone that holds me up each day. I’d like to think that we support one another through structure and protection. My emotions have ran high throughout the year; I have been tested to my limits. The pain and depression felt, has hit every angle that it could possibly conceive. But I have stuck it out this far, pushing myself to the extremes, even with knowing that it might be easier to just give up. In this life, there is no such thing as giving up- it’s a lame term for one who wants sympathy or an easy passage out. Like I said before, Life is Tough- it wasn’t meant to be easy under any circumstances.

If you’re like me, you find yourself recalling childhood memories; a time when things were so simple, a time where every child wanted to be a firefighter or astronaut. We didn’t have to worry about the lives we would disappoint along our destination on the path of whom we were really going to become, it was all about playing hopscotch and getting the best dodge ball at recess. Careless times, plain and simple; the sound of the ice cream man or playing in the sprinkler. Getting a boo-boo and running to dad, because mom always put antiseptic on it which stung like hell- dad always kissed it, gave you a piece of candy and everything was fine again. These simple pleasures remind us of who we are, the beauty in each individual.

Every once in a while we glance back at those moments, wishing we could relive them. It helps us take a step in reverse and re-examine what we have become; giving yourself that pinch in the arm to know you’re still awake, to see yourself bleed. All while knowing you have come this far, so why not make it through the whole journey to see what lies ahead. For some, there is a pot of gold at the end of the rainbow. For the less fortunate, we have to make our own destination and hope that it leads us to where we want to be..