I have...

Multiple Sclerosis.

What does this mean? DO I EVEN KNOW?
For once, I'm going to express how I feel about something I'm apparently supposed to know a lot about. I'm not going to make a video (yet). I'm going to write. I'm going to pour. I'm going to CRY. I'm going to vent. I don't know what it means. I don't know what Multiple Sclerosis is. I don't know what it does, or what it feels like really. I don't have the slightest clue. I'm not ANY form of a genius, I have some book smarts, not a clue how because I'm absolutely the worst person I know when it comes to studying. I procrastinate. I smoke cigarettes. I drink diet coke. I excercise my fingers when typing. Seriously. I don't know what this disease is. I have it though. Oh yes... I have Multiple Sclerosis. *grabbing a cigarette, jamming to Shinedown (Someday) on a Sony MP3 player* What does this mean? It means life fucking sucks. I'm a pessimistic right down to the fucking core. I think life is absolutely unfair. I tend to consider myself someone who choses to believe in God and believe in the possibility of Heaven and hold a faith true to this, as I see miracles or things I consider miracles in their own right every single day to which hold no explanation other than they are exactly that...miraculous. I find amazement in things I'm sure the average Joe would not. Fuzz from a towel, the leaf blowing around on the ground, the fact that my son decides on day to have an identity crisis and state that aliens are nice and they won't eat our brains, and my daughter. My daughter.
Let me tell you about her. Kayla. Kayla is 7. Kayla is this bright, obnoxious, beautiful little girl that I created with my ex husband. SHE was my very first reason for fighting this battle, the first reason I had to fight. Because at one point I felt like giving up and then I realized, the doctors appointments and follow ups for her, when one doctor would listen to her heart, realize how "cool" it sounded, scurry off to find residents who could listen to and in the midst of doing this... Kayla and I will just laugh uncontrollably at how silly these doctors get over her heart. See Kayla has heart disease, and for 7 years she and I both have seen many doctors get worked up. We've gone to tons of appointments and every time one doctor listens, he runs off to get more doctors so then can listen. Those 5 minutes in the middle, the best. It's like our secret time. She tells jokes about the doctors, her heart, it's like nothing in the world exists except for us. It is moments like that that keep me fighting.
Now, not to discount my son. Tristan in his own right has captured my heart a million and a half times as well. Too many to even pick out at this given point. No worries.... He'll get his moment here as well.
So I fight. By fight I mean... I take my medicine. Not always consistently because I get lazy. Lazy as in, I sometimes get very tired of fighting. Tired of the pain from the medicine, tired of the aggravation from injection sites, tired of the symptoms, just tired. Lately though I've noticed that if I skip days with medicine I just feel worse. I shake more or I just forget things. I have multiple "off" days. Like nothing goes right, whereas when I consistently take medicine, this happens far less. Copaxone is what I take by the way. Mixed right along with an anti-depressant and a migraine medication. Wellbutrin and Topomax. (300mg Wellbutrin, 100mg Topomax, 1 injection - per day) It's not a bad little concoction at all really. The Wellbutrin makes me sadder than I think I should feel, but allows me to realize how I should feel about this disease. The Topomax nearly completely rids my life of migraines which as of late has been my first factoring symptom to an exacerbation (attack). Not bad... just ...sad...
I think I've been in denial for a year, or so I stated to my boyfriend last night. Well I do. I've been in denial about my diagnosis for a year. I was diagnosed officially with Relapsing Remitting Multiple Sclerosis on August 13, 2008. At that time I was told I had 4-6 lesions in my ventricular cavity blah blah blah....etc etc etc. I was so happy to just be told I had a diagnosis that I really just blocked the realization of it all away. I had dealt with symptoms of it for 2 years. 2 years of HELL. 2 years of being told I was crazy even after being hospitalized for over a month, unable to talk, walk, write or function! Crazy is what they said..."clinically isolated syndrome" - but then an MRI in July 2008 showed disease progression and bam... Nicole had MS. I was relieved. My neurologist at the time was shocked that I was so happy. I'm shocked now. Because now, I am not happy. Not at all. It hit me, the sadness of it all, the realization, the truth. The sudden feeling that I'm alone in this. I'm the only person who can change how I am (which really isn't any different than before being diagnosed) but just that there's a reason why the medicine hurts. Something is wrong. Something I cant fix...something my kid's can't fix with kisses and hugs - and trust me, those are powerful. Something my boyfriend can't even fix, and though he's handy around the house, he can't fix this....
My thing is this... I saw the MRI results. The tech's review on my brain and my brain in full view via 292 scanned MRI images. It's wierd. To see my brain. I mean, I know what a brain looks like, someone else's brain or brain models, but mine... nah, it's wierd. Looking at it is cool, but knowing something is wrong feels really, really bad. BAD BAD. The kind of bad that strikes you blind sided.... and when you review the images on the MRI and you see the white dots and know they are not supposed to be there, but they are, and you know they are what bring about falling, or faultering of words, or forgetfulness of an appointment or last weeks fight, or numbness in the right hand or tingling down the left leg or visual disturbances.... somethings wrong. Noone has an answer to it, they just know it's there. Now as a patient, maybe I'm crazy for feeling this way. I know my progression with this disease isn't nearly as bad as some. I have a friend from highschool, same age, close friend, who has secondary progressive and she is way worse off than I am, nearly unable to walk, already had surgery on her brain, open heart surgery, etc and love her to pieces, gives me just one more reason to fight....it could be me, and it isn't... and for that another miracle. But I want to fight for her too! I want something done, I want to know why we go through this, why we feel like this, why .......WHY!

So, do I know what MS is? Yes. From my own perspective, MS is disease that sucks. IT SUCKS. I refuse to sugar coat anything about it. There is nothing glorious about it. Every single night there are people giving themselves injections, struggling to walk, turning a button on in their chest, to avoid tremors...and if they are good people, lucky people they have the support that I do. Someone, like my boyfriend who help. Someone who runs over when he notices that I'm crying after looking at my MRI's, realizes that what I'm going through, the real side of MS is what people need to see. He is the other side of this story, so if you ever want to know about Multiple Sclerosis, ask him, ask the people that work along side him.... the caregivers. Afterall, they have the hardest job.

Get her words out..

Lately it seems as though I've had the worst time trying to get my words out. I don't know exactly what has been keeping them in aside from a fear of some people reading my poorly blog or maybe the fear of letting everything go and allowing just the slight inkling of a possibility that someone, anyone will read or see how I view things. Mania... that's what it is..

Well, I found song lyrics. My most resourceful tool for trying to find a way to express how I feel. Music moves me in so many ways and I firmly believe almost every aspect of my life could be detailed by a variety of songs. Right now, this moment, this one as the sun shines in the front door as a light has just turned on (the brightness of the sun scared me.... I was a bit nervous someone had walked in the front door.... ahh)

Someday, when I'm older
And they never know my name
Somehow, if I'm honest
I can never feel ashamed
Maybe I was wrong to
Hold you up so high
Now I know I've lost you
To the feelings I kept inside
I don't know if it felt like
I wanted you here,
the way that I wanted you last time
We're not on the same page,
you don't even know me
Cause you never took the time
Someday, when it's over
And you never show your face
I hope you'll remember
How I tried to make you a place
And so now, I move on
To keep my piece of mind
In someway, I've failed you
But I just ran out of time
I don't know if it felt like
I wanted you here,
the way that I wanted you last time
We're not on the same page,
you don't even know me
Cause you never took the time
I'm not sure that you hear me
I'm not sure that you look at me
the sameI will always be attached to you
But I'm never gonna feel the same
I don't know if it felt likeI wanted you here,
the way that I wanted you last time
We're not on the same page,
you don't even know me
Cause you never took the time
No, you never took the time
Someday, when I'm older...


So until I can find rhyme and reason to why this charade continues.....

Dinner Time..

Dinner time and STILL can't talk about it. LORD HELP ME! I need to find the words or friends - Why can't this blog be my friend? Perhaps it's the fear that someone will find this and then read it...

Rediscovery Needed... NOW!

Amazing isn't it? I sit at work looking at my blog with a relatively blank stare... knowing I should "blog" - but not really able to find the words I need to do it. WHY?! There is so much to say and so many things running through my mind, why can't I just get it out? Why has this been so difficult? I hope soon I can learn to trust this blog again - or start anew with it, as if it were a best friend that doesn't really offer advice, just a really wonderful ear. Soon my friend, soon.

Just let me gather my thoughts - pray for answers, then I shall return.

*I may do some pre-writing at lunch since the stress of it all makes me not so hungry!