The past couple of weeks Friday's have been my time to share with you all my favorites from the week. Today, however, I am going to focus on just one thing I've been loving which is actually blogging itself. There are a few reasons why I chose today to focus solely on blogging and why I started:
- Today marks one month of blogging
- Today is Rare Disease Day
Bullet #1 I'm sure makes complete sense and needs no explanation - celebrating one month of having a blog - but I can assume you may all be wondering what the latter has to do with anything.
Well, it is a reason as to why I started blogging and why I specifically chose motivation and inspiration as my focus. As you might guess, this post is about to get pretty personal; my hope being to help everyone get a better understanding of who I am and my passion for a positive outlook on life.
Although first I want to educate a little bit about what a rare disease is.
What is a rare disease? A rare disease is a disease which affects fewer than 200,000 people. People who have rare diseases struggle with discovering a proper diagnosis which leads to issues finding information and receiving treatment. Medical knowledge/research is more difficult. There is also not much public awareness which is why Rare Disease Day was established.
Chiari Malformation (CM) is a neurological disorder. Those with CM have structural defects of their cerebellum. What this means is that part of their brain descends out of the skull into the spinal area. 1 in 1,000 are affected.
My journey started long before December of 2011. Actually, my journey started 2 years prior. I'm certain most everyone who either suffers personally with a rare disease, or knows someone who does, can relate.
As mentioned above, those with rare diseases struggle with finding proper diagnosis's. This can lead to many months and or years of hopelessness. Throughout this time people are either treated for something they don't have or told there is nothing that can be done for them. I know this because I experienced both of these myself.
For 2 years, starting summer of 2009 before my senior year in high school, I was misdiagnosed. I remember going to number doctors appointments with my parents and at one point felt as if maybe I was just a hypochondriac.
Now you're probably asking what does this have to do with Nichole?
I am someone who has been affected by a rare disease.
December of 2011 I was diagnosed with a rare disease, Chiari Malformation.
Now bear with me, I promise all I'm about to share has a purpose.
Chiari Malformation (CM) is a neurological disorder. Those with CM have structural defects of their cerebellum. What this means is that part of their brain descends out of the skull into the spinal area. 1 in 1,000 are affected.
My journey started long before December of 2011. Actually, my journey started 2 years prior. I'm certain most everyone who either suffers personally with a rare disease, or knows someone who does, can relate.
As mentioned above, those with rare diseases struggle with finding proper diagnosis's. This can lead to many months and or years of hopelessness. Throughout this time people are either treated for something they don't have or told there is nothing that can be done for them. I know this because I experienced both of these myself.
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>>Or maybe I felt that because a doctor really called me that!!<<
I went from doctor to doctor each having their own thought as to what was going on with me - some told me I just had migraines, some told me they didn't see anything abnormal, some told me I was stressing myself out, and one even tried to ask me if my parents were putting too much stress on me. When I tried to explain to the doctors that migraine medicine didn't help, but managed to just made me sick and stress was not the issue they answered with "then there is really nothing else we can do for you." This truly made me feel helpless. However, I was and still am blessed with parents who believe in me and they never stopped fighting. They didn't take no for an answer.
These two years were some of the hardest of my life. I had no understanding of what was going on with me. All I knew was I didn't feel good and nothing would help. I would describe the pressure in my head as a balloon in a jar that you kept putting air into even though it could expand no further. I also had to stop all types of physical activity, including dance which was my passion and outlet. I had to stop these sorts of things because doing them would cause me to blackout and my blood pressure to drop. My life came to a complete halt out of the blue. I had moments where I was very low but I would snap myself out of it by remembering my favorite saying:
Someone else somewhere out there is going through something worse.
This is also when quotes became a huge part of my daily life. Each morning I woke up and would look to find a motivational/inspirational quote which helped me start the day off with positivity in mind. This became my daily routine and kept me going. There is much power in a positive outlook.
Fast forwarding to December of 2011, I went for my bi-yearly MRI and we received the ominous news that I had Chiari Malformation. The only reason it was discovered is because the radiologist went to a conference the week before and he learned about Chiari. This news was somewhat bittersweet. We now knew what was affecting me for the past 2 years of my life which was somewhat of a relief but we had no idea of what it was which left us in a state worry. But this wasn't the end all. Since knowledge of rare diseases is not abundant it takes time to find the right place to get help.
My family and I found the Chiari Institute, in New York, June of 2012.
Furthering our search we saw an area to request an appointment. We instantly felt hope. Next thing we knew we were printing and filling out a multi-page questionnaire and gathering all my previous health records. The following morning my information was in the mail and on its way to New York. Shortly after we received a phone call saying I had an appointment on July 23rd, 2012. There were no if ands or buts about it, we were going and my mom dad and I left on Friday July 20th to head to NYC. I honestly think we were all in complete denial on the drive out as we were talking about how great it would be to go to a show and bought tickets to "Wicked."
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Although when the song "Defying Gravity" was sang at the end of the show we all certainly were not in denial anymore - I remember my mom and dad both grabbing my hands - and we didn't even know what was about to come.
Monday morning after some intake and tests we were ready to meet my doctor, Harold Rekate. Let me just take a second to tell you this man was absolutely amazing. After about 20 minutes of us taking he told my parents and I that I was a candidate for surgery but that the choice was ours. He then left the room and gave my parents and I time to talk alone. I remember my parents asking me if I fully understood what he was saying and my response being; "yes, surgery." They then took the time to clarify that this was not just surgery but it was brain surgery. We then began to talk about the pros and cons. We are a family who believes things happen for a reason and this being the case we decided to take the chance to make me feel better and opted for surgery. When Dr. Rekate came back in we let him know our decision and he went on to explain the procedure and said they would be in touch shortly with a date and time for surgery. The next thing I knew we were back in the car on the way home and I was calling to tell my brother.
A week later we received a phone call saying my surgery date had been scheduled for August 14th. The days to come were filled with conversation and research. There are many forums out there for people suffering with rare diseases once you finally know what it is you are suffering from. These helped me a lot to see that I was not alone.
Medhelp.org
I ended up actually having 2 brain surgeries 2 weeks apart, August 14th and August 28th of 2012. There were some complications after my first surgery and 12 days later I started to leak cerebrospinal fluid out of my incision which had me on an emergency flight back to New York and the OR.
I am so thankful for my friends and family; they were there every step.
Today, a year and a half later, I am doing great and no longer just going through the motions much like I was 4 years ago. I am living life. I do not simply have my passion of dance back in my life, but I am blessed with a dream come true everyday dancing for the Detroit Pistons Dancers. I also have a brand new outlook on life and the circumstances we face.
There's beauty in everything if you look.
Life happens and we can either run from it or run with it. Running from it seems like the easiest route but running with it helps us to become the person we are meant to be. I personally choose to embrace whatever is given to me. It is not always easy and I have my days which are a struggle but when it comes down to it I have never regretted facing a challenge. I also like to look to others as compared to looking at myself. Yes, what I am going through seems like the end of the world but there is someone out there who is going through worse. If you take your eyes off yourself and look to help someone else what you are going through no longer seems so bad.
Throughout the years many friends and family members have told me I have a special way to find the best in the worst. To me I was just controlling one of the things I actually can in this life, my outlook. A month ago today, never even realizing it would also fall on Rare Disease Day, I decided to share my passion for looking to the positive and started my blog.
Everything has a purpose and a time - you have to trust in the unknown.
You have to go through it to come through it.
Keep pushing, keep fighting.
In the end you'll be thankful you did.
This is me and this is why I blog.
Questions of the Day:
1) Are you or someone you know struggling with a rare disease?
2) Has a medical condition made you or someone you know feel hopeless?
3) What situations have forever changed your life?
