In the world of lupus, no day is like the rest, and the ordinary nuances become the extraordinary. The body while being under attack, screams for rest, yells with aching clarity each time we move either getting out of the bed in the morning, trying to play with our children, or even just sitting in a chair. Pain is a reality for most in this enigma of a disease along with increased chances of stroke, heart disease, miscarriages, migraines, neuropathies, depression and the list goes on and on. Moreover, I have had my share of time to openly grieve the loss of what could have been. Always wondering what it would be like to not have debilitating fatigue, energy to keep up with my beautiful children, and not having to see the hurt in their eyes each time I say "Not today." Of course, pain would be nonexistent except for the occasional cold, and viruses like the flu would not strike fear in my heart each year during the months of October through March knowing that with my immune system I could end up in the hospital in the blink of an eye. People would not look at me funny when I tell them I have a disease called lupus, or think that I am just being lazy or stubborn.
Yes, I have had plenty of time to think in the days that my body, in lack of better terms, has let me down and raged with body aches, unexplained fevers, enlarged lymph glands, hair loss, joints jolted with pain, unbearable fatigue, and a soul that cries out for the mere thought of a reprieve. My life is truly unique. As someone else has so eloquently explained it, my spoons are limited. I do not have an unlimited supply of energy to do all that I crave. Each day is given differing amounts of spoons (energy); thereby making it nearly impossible to create a schedule to follow.
However, as bad as it may sound, the fact remains that I am still blessed beyond all measure and fiercely, devotedly, unabashedly living with lupus. My focus has definitely changed over the last decade with this disease, and it has taken me on a path of love, understanding, acceptance and survival. I have changed many things along this journey, but I have always tried to listen to and respect my body. Respect comes in many forms either through sleep habits, exercise, and what I put into my body either food wise or medicinally. Our bodies are under constant attack, and trying to act on the things that I can change has definitely helped over the years.
I wish and hope for everyone out there with any kind of debilitating disorder/disease or the caregivers that give their all each and everyday without the thanks they deserve may eventually come to grips with loss. The loss of a life that had been dreamed of or expected until this disease unknowingly stripped it from you. I hope your quality of life is improved and that focus is put back on what you can do as opposed to what you can't. Life is what you make it. Perceive the impossible then go get it!
All the best,
Katrin
Monday, September 30, 2013
Sunday, September 8, 2013
Dreams and My Inner Child
The past few months have been enlightening to say the least. Health scares a plenty left me time to reflect upon my life and where I have been, where I am currently, and where I am heading. Nothing like a scare to make one focus on the most important things in life. Some would say that it could be a midlife crisis, and while that may be true to some extent, I believe it is always important to stop every once in awhile to reassess life's path, and determine if a change in direction is warranted.
When I was young, I had an overwhelming desire and passion to be either in front of the camera as an actor or behind it. I really did not care which one. It was the ability to lose oneself in some other character and be someone you're not that really attracted me to the film industry. Stuck in a rut of having people place me in a mold that for the life of me I could not seem to break free of, I would soak up news on what truly happened behind the scenes by reading magazines considering the internet had yet to be launched. Spending hours reading about lighting, set design, location management, I soaked up anything and everything about it. The allure of knowing how a film was made was all consuming at times, and I wanted nothing but to one day be a part of it however small that would be.
When college came around back at the ripe old age of 18, I chose the path well travelled and decided to attend the University of Northern Colorado at Greeley to pursue a BA degree in Psychology thinking I would one day hang out my own plaque and become a counselor. It was the responsible thing to do or so I thought, but what it really boiled down to was that I was afraid. Fear is a powerful influencer, and I was nervous to leave the safety of my own family and start a life on my own several states away. After college, I floundered for a bit before finding my other calling in life which was pharmacy. All the while, I met my husband, had a few children, and graduated with a well fought for degree in pharmacy from one of the best schools around. While in pharmacy school, I was diagnosed with lupus, and while I was not thrilled about it, I learned to adapt fairly well. It became my life's mission to absorb as much information about this debilitating disease as I could in order to inform the public and fellow sufferers about the disease and any advancements that came to light. Awareness is key since lupus is not apparent in most people. Without a lupus sufferer stating they have it, many people would never know. There is strength in numbers as well, and to build a community of caregivers and lupus livers alike would be a dream come true.
The last few months have stirred up feelings of old, and an immense desire to do things in life now rather than later. Time is fleeting, and the disease has made me realize that there is no time like the present. The allure of being an actor or behind the camera in some capacity has never subsided even in adulthood, but I have to say it has taken a backseat what with soccer practice, dance class, swim team not to mention the Daisies along with the conscious decision to homeschool my children. It is funny how as parents we tend to put our own wants and desires on the back burner all the while encouraging our children to reach for the stars and never take no for an answer. I encourage each step my children make whether it be soccer, dance, swimming or something else, and I have recently come to the realization that I also need to show my children too. Actions speak louder than words, and I aim to show my children that dreams really can come true.
Recently, I became obsessed with a certain TV show that shall remain nameless for now, but I could not seem to stop watching the first few seasons of it after stumbling across it on Netflix. Not wanting to wait for the last season to appear on Netflix, I immediately went out and got the boxed set. Of course, I just had to watch the behind the scenes footage that was included and was struck with the realization that the young girl of so many years ago is still inside of me wanting to break free. Her enthusiasm is breaking through the cracks, and makes me not want to deny my dreams in life any longer. I know that I have many more responsibilities in life, and sometimes I wish I could escape away for a little bit and be that little girl again. It may seem selfish, but it is definitely essential. No one in my life would benefit from me otherwise, and it is with this notion that I wish to convey to all the young boys and girls inside of each of you. Take time to reintroduce yourself to your inner child, and remember all those dreams. Reach for the stars because you are definitely worth it. I know that I am finally listening to all that my inner child has to say after so many years of silencing her, and I am thrilled to say that I have begun writing a fiction book of my own. The idea that has been stuck in my brain for the last decade is finally making its way onto paper, and who knows. Maybe, just maybe, it will make it to the big screen someday. I thank lupus for forcing me to live life to the fullest. Dreams can be achieved after all, and I hope you listen to your inner child too. Without dreams, life seems dull and drab. Reach for the stars, and you may just touch the moon! If you want, post your dreams and aspirations. We would love to hear them:)
All the best,
Katrin
Dream
When I was young, I had an overwhelming desire and passion to be either in front of the camera as an actor or behind it. I really did not care which one. It was the ability to lose oneself in some other character and be someone you're not that really attracted me to the film industry. Stuck in a rut of having people place me in a mold that for the life of me I could not seem to break free of, I would soak up news on what truly happened behind the scenes by reading magazines considering the internet had yet to be launched. Spending hours reading about lighting, set design, location management, I soaked up anything and everything about it. The allure of knowing how a film was made was all consuming at times, and I wanted nothing but to one day be a part of it however small that would be.
When college came around back at the ripe old age of 18, I chose the path well travelled and decided to attend the University of Northern Colorado at Greeley to pursue a BA degree in Psychology thinking I would one day hang out my own plaque and become a counselor. It was the responsible thing to do or so I thought, but what it really boiled down to was that I was afraid. Fear is a powerful influencer, and I was nervous to leave the safety of my own family and start a life on my own several states away. After college, I floundered for a bit before finding my other calling in life which was pharmacy. All the while, I met my husband, had a few children, and graduated with a well fought for degree in pharmacy from one of the best schools around. While in pharmacy school, I was diagnosed with lupus, and while I was not thrilled about it, I learned to adapt fairly well. It became my life's mission to absorb as much information about this debilitating disease as I could in order to inform the public and fellow sufferers about the disease and any advancements that came to light. Awareness is key since lupus is not apparent in most people. Without a lupus sufferer stating they have it, many people would never know. There is strength in numbers as well, and to build a community of caregivers and lupus livers alike would be a dream come true.
The last few months have stirred up feelings of old, and an immense desire to do things in life now rather than later. Time is fleeting, and the disease has made me realize that there is no time like the present. The allure of being an actor or behind the camera in some capacity has never subsided even in adulthood, but I have to say it has taken a backseat what with soccer practice, dance class, swim team not to mention the Daisies along with the conscious decision to homeschool my children. It is funny how as parents we tend to put our own wants and desires on the back burner all the while encouraging our children to reach for the stars and never take no for an answer. I encourage each step my children make whether it be soccer, dance, swimming or something else, and I have recently come to the realization that I also need to show my children too. Actions speak louder than words, and I aim to show my children that dreams really can come true.
Recently, I became obsessed with a certain TV show that shall remain nameless for now, but I could not seem to stop watching the first few seasons of it after stumbling across it on Netflix. Not wanting to wait for the last season to appear on Netflix, I immediately went out and got the boxed set. Of course, I just had to watch the behind the scenes footage that was included and was struck with the realization that the young girl of so many years ago is still inside of me wanting to break free. Her enthusiasm is breaking through the cracks, and makes me not want to deny my dreams in life any longer. I know that I have many more responsibilities in life, and sometimes I wish I could escape away for a little bit and be that little girl again. It may seem selfish, but it is definitely essential. No one in my life would benefit from me otherwise, and it is with this notion that I wish to convey to all the young boys and girls inside of each of you. Take time to reintroduce yourself to your inner child, and remember all those dreams. Reach for the stars because you are definitely worth it. I know that I am finally listening to all that my inner child has to say after so many years of silencing her, and I am thrilled to say that I have begun writing a fiction book of my own. The idea that has been stuck in my brain for the last decade is finally making its way onto paper, and who knows. Maybe, just maybe, it will make it to the big screen someday. I thank lupus for forcing me to live life to the fullest. Dreams can be achieved after all, and I hope you listen to your inner child too. Without dreams, life seems dull and drab. Reach for the stars, and you may just touch the moon! If you want, post your dreams and aspirations. We would love to hear them:)
All the best,
Katrin
Dream
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