My Life B4 Everything Changed

My life before becoming sick was awesome. I was very active and very involved in just about anything I could find. I often wish I could get back what I once had. I cant believe I ever complained back then. What the heck was so bad? If I only knew what was coming, maybe I would of done things a bit differently. See this today makes my very sad to know I may never get this back. Makes me question what I did to deserve what happened to me. Why me? Why now? Why ever? Its all gone, my voice, my everything. Sometime I just go here and reminisce about the fun I once had.
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So on Monday we drove 3 hours to a new doctor that specializes in Chari Brain Malformations. Unfortunately he does not take our insurance so I had to pay $900.00 out of pocket. Of course paying 900 dollars when you are not working because you are sick is not so easy, but I have to get better. The good news is, I could really tell this doctor cared and understood just how sick I was and everything I have been going through for the past 6 years. He took the time to review all my MRI's back to 2006 and explain to my husband and I why I have been feeling so bad. Apparently I do have a Chari as well cervical spondoloysis which may also be the cause of my balance problems, narcolepsy, and fibromyalgia.

 My doctor explained that it seems my brain is not processing

things the way it normally would because everything

is being pushed together do to this Chari. He informed us I will

need 2 surgeries, one on the brain and the second on my spine. So on 

December 18th I have another appointment (3 hours away with

no insurance coverage) so he can review more detailed films 

of my neck and brain, this way he can make a decision on which

surgery to do first. He also advised us he will make sure to go 

over everything with us so we can play a role in which surgery 

I have first.

I am so tired of being sick and I am really happy to find a doctor

that cares enough to try surgery to correct these issues. However

having surgery on my brain and spine when having surgery does not

guarantied I am going to feel better is extremely scary. Not to

mention I have had several friends who have had surgeries that have 

had made them feel worse. To be honest I am not sure how I would handle

feeling any worse than I do now. Of course I am going to do whatever 

the doctor advises me to do and just hope for the best.

One thing is for sure, I have one of the best husbands in the world. He has taken such good care of me over the past couple years, I don't know how I

would have managed without him. More to come after my next visit.

So, I know its been a while since blogging, but I have been really sick lately. Its so very had having an invisible disease that people don't understand. Sometime I feel like I know more then my Neurologists. I attempted to diet over the last 3 months eating about 900 calories a day. Well guess where that got me,Well no where! I lost a little bit of water weight but got no where, so after 3 months I gave in again. Lyrica continues to pile the wight in my body but I have to take it for my fibromyalgia.  

I was not going to go there but on top of Narcolepsy I have fibromyalgia, 

Cervical OPLL - Ossification of Posterior Longitudinal Ligament, degenitive disk diease, 

sleep apneia and a Chiari Malformation. Now my family and everyone else I come in contact with 

 except of course all the NC doctors,  think the you must be  at least 3 to 5 mm below the foramen magnum to be diagnosed with a chari. 

Chiari Malformation is the root of everything. 

However Doctors around the world are now seeing that there are different classifications for a Chari. So why is it I cant find a doctor with this knowledge? Instead they all look at me like I am crazy and just continue to treat my Narcolepsy I have fibromyalgia, 

Cervical OPLL - Ossification of Posterior Longitudinal Ligament, 

degenitive disk disease, and sleep apneia.

 It's been so frustrating, sometimes  I am not even sure how i am able to deal with all of it.

 I guess the only reason I am still going is because i have a great family who has been

 there for me through all of this.

I recently found a support group which I am joining on Oct 4th 2012. I cant wait to meet other people who know what its like to live day to day this way. Its hard being alone.

Having an Invisible Disease Will Change Your Life Forever

Everyday is a struggle for me now. Why can't I just live my life the way I once did before everything stated going wrong with my health? All my life I was an out going person, someone who loved attention, singing, spending time with family and friends, washing my 2 cars every week, attending school and work, cleaning my house daily because I hate gems, taking care of others and dedicating my extra time to people and animals in need. 

Now I am someone who spends 15 hours a day in bed or on the couch sleeping, having to push myself to get up to use the bathroom, no longer being able to work, forgetting the simplest words to finish a sentence, forgetting where I have placed things, falling often,bumping into things,canceling important appointments because I don't have the strength to get in the car and drive, forgetting to pay bills so I now have everything set up on auto pay, taking 3 hours to compose a simple email, oh there is so much more but I won't go on. This might sound strange but sometimes I wish I had scars or scabs on my face so people would stop saying " you don't look so"? Take it from me someone with an invisible disease, this is one of the worse things you can say to someone like me.

 It becomes very depressing because there is nothing you can really do to get better. Everyday is more and more of a struggle and me makes it even worse when people ask me the following questions repeatedly. What is wrong? Why are your eyes so red? You are not the Kirstin I once knew what happened to you?Why don’t you sing anymore? How did you get narcolepsy? What is narcolepsy? Why are you not sleeping right now? Why won’t you come out with us anymore? Why have you put on so much weight? 
Now I am sure all my real friends and family are just curious and want to know more so they can understand it better. But what really bother me are the people out there that are not even sure narcolepsy is real and think it is a joke. Everyone asks me why do you care what other people think? Its not that I care about  what others think. My concern is about me and my daily struggles, I want people around me to understand what it is to live like this everyday, I want people to understand this is a real neurological disorder that impacts a lot of people. I want people to know how hard it is to live with it and how it changes your life.
 I know this is going to sound really ugly but at least 2 times a day I find myself wishing the people that give me a hard time about it, or make fun of my disorder, would get it for only a month,so they would know what life is like to be me. Maybe it would stop them from being so cruel and help them to be more understanding.Sometimes I feel like this is only way they will understand and show sympathy for people who suffer with it.

About a month ago, things got extremely bad for me, I am certain, I was declined for a position because of my neurological disorder. For about 2 years now, I have been sick and missed a lot of work, which was covered and approved by FMLA. I finished top 10 in my department and they took everyone in the top 10 except me. Of course, I got the standard decline letter stating there were others more qualified. This put me further into my depression. All i did was think about my contributions to the business before I could no longer pretend that nothing was wrong. Pretending nothing was wrong became very hard after a while and I could no longer do it.  Everyday, I would step into work and pretend I was an actor in a Broadway play. You see when I was younger I was an actress in NYC on Broadway. For many years, in many roles like Annie,Sound Of Music and Oklahoma so acting cane pretty easy for and at this point it was all i could do to hide my battle narcolepsy. 

In all my year with my company, I remained a stellar performer in the department and here is how I did it. I would take my laptop home at night, work, and additional 2 to 6 hours to keep up with my peers, it was all I could do. You see a job that once took me 6 hour or less to do in a day was now taking me around 12. That is how committed I was to my company, I loved working for them and I thought they enjoyed having me as a 14 year employee. I never expected them to decline me for a home based position. A position I really needed,  insurance was a must for the 18 meds I take a everyday just to function at about 50% of what a normal person does. Of course, the stress and worry of the turned down made me even sicker but guess what I did?

 I tried my best to forgive and forget before it made me even sicker. Some have asked why not go to ERG? Why not fight it? Because I do not have enough energy left in me to fight anymore. I was also scared I would lose my job because they would then fire me for bring a complaint against the company. So I left it alone and I was laid off after 14 years because I had no more energy to fight. So today I will end my blog by saying, I hope one day more people will understand this disorder and help people with it instead of hurting them.