Friday, February 19, 2010
To any of you MS fighters out there you know that their are good day's and there are bad days. Days of hope and days of endless fear. Well today is one of those days that comes with endless fear. I turn 22 tomorrow, and for most people my age this would be a great day, a year older, a little more freedom, maybe even a step in the right direction to start your life as a young adult. For me I'm weighing the options to get disability to not get disability. To finish out a year of Tysobri treatments that don't seem to work or try something experimental. I found out today that the DMV has decided to revoke my drivers licence do to my disability. Now I don't have a way to get to my two jobs even if I was healthy enough to get their in the first place. I'm just waiting for that one break in life where something will just be easy....just be right.
Friday, January 29, 2010
Hi,
My name is Kristy. I am a 22 year old mom with Secondary Progressive Multiple Sclerosis. I'm hoping that blogging can be therapeutic for me, being able to talk openly and honestly about how this disease has affected me and my family. Unfortunately I am not the first person in my family to be attacked by this disease. It first hit my Grandmother Marjorie at a young age and landed her severely disabled and in a wheelchair. She lost her life in her battle at age 45. Then it attacked my big sister Amy who is now who I look on for inspiration and strength. I was diagnosed in May 2008, three months after I delivered my beautiful baby Olivia Fay. I had been experiencing symptoms since my Junior year in high school. I was scarred out of my mind thinking that I had a brain tumor or something my first symptoms were severe vertigo, fatigue, and some cognitive issues such as memory loss, and speech problems. Shortly after I had my baby I woke up and was unable to walk. I had the most severe pain I had experience in my life and that's a lot to say being I had just delivered a baby. My husband had to dress me, bath me, and carry me to and from the bathroom. I couldn't ignore this problem anymore. I was really scarred that I was dying. (I tend to be a little dramatic!). My husband carried me into the emergency room and they told me that I probably had a slip disc in my back or something so they did an x-ray, and didn't find anything. They suggested that maybe I had just messed something up in my delivery and to relax for a few days and it should go away. The doctor prescribed me with some pain pills and sent me on my way. A week later I still couldn't walk and my family had this big family vacation planned to go to Arizona. I went with the help of my husband and a load of pain medication. Little did I know at that time that 100 degree weather of Arizona would only make this situation that much worse. I'm pretty sure I now know what hell is like. When I got home I couldn't even move my body an inch without throwing up or passing out from the pain. I decided to go to an orthopedic specialist and she immediately wheeled me across the parking lot to a neurologist. He suggested because of my family history with autoimmune diseases that I get an MRI but he was determined that we wouldn't find much. Three days latter I received a call from my Neurologist to come into the office. He sat me down and said "Well I'm not going to lie things don't look good." Never a good way to start a doctors visit. I ended up having over 30 lesions on my brain. Since then I have tried Copaxone, and Rebif injections, non of which have worked. I am now on Tysobri, and the occasional Solymedral infusion. I can only hope for the best!
My name is Kristy. I am a 22 year old mom with Secondary Progressive Multiple Sclerosis. I'm hoping that blogging can be therapeutic for me, being able to talk openly and honestly about how this disease has affected me and my family. Unfortunately I am not the first person in my family to be attacked by this disease. It first hit my Grandmother Marjorie at a young age and landed her severely disabled and in a wheelchair. She lost her life in her battle at age 45. Then it attacked my big sister Amy who is now who I look on for inspiration and strength. I was diagnosed in May 2008, three months after I delivered my beautiful baby Olivia Fay. I had been experiencing symptoms since my Junior year in high school. I was scarred out of my mind thinking that I had a brain tumor or something my first symptoms were severe vertigo, fatigue, and some cognitive issues such as memory loss, and speech problems. Shortly after I had my baby I woke up and was unable to walk. I had the most severe pain I had experience in my life and that's a lot to say being I had just delivered a baby. My husband had to dress me, bath me, and carry me to and from the bathroom. I couldn't ignore this problem anymore. I was really scarred that I was dying. (I tend to be a little dramatic!). My husband carried me into the emergency room and they told me that I probably had a slip disc in my back or something so they did an x-ray, and didn't find anything. They suggested that maybe I had just messed something up in my delivery and to relax for a few days and it should go away. The doctor prescribed me with some pain pills and sent me on my way. A week later I still couldn't walk and my family had this big family vacation planned to go to Arizona. I went with the help of my husband and a load of pain medication. Little did I know at that time that 100 degree weather of Arizona would only make this situation that much worse. I'm pretty sure I now know what hell is like. When I got home I couldn't even move my body an inch without throwing up or passing out from the pain. I decided to go to an orthopedic specialist and she immediately wheeled me across the parking lot to a neurologist. He suggested because of my family history with autoimmune diseases that I get an MRI but he was determined that we wouldn't find much. Three days latter I received a call from my Neurologist to come into the office. He sat me down and said "Well I'm not going to lie things don't look good." Never a good way to start a doctors visit. I ended up having over 30 lesions on my brain. Since then I have tried Copaxone, and Rebif injections, non of which have worked. I am now on Tysobri, and the occasional Solymedral infusion. I can only hope for the best!
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