October 3, 2012-First Post

So here goes…

I’ve put off starting this blog for quite some time now, because I felt like I waited too long and things have happened and how was I going to catch everyone up to where I am now? Well, I decided the hell with it!! So many thoughts in my mind that I need to get out.  I also decided to start this blog because I’m hoping, that hearing my journey might help someone out there, that’s going through something similar.

Let me introduce myself…

I’m a 35 year old, happily married, mother of two living on Long Island.  I grew up in a “normal” family and have lived a “normal” life.  When I was younger, thinking about “where” I’d be when I was 35 years old, I imagined just that…living on Long Island with my husband and children, cheering on my son on soccer field and my daugher at dancing school.  Well, that’s “where” I’m at, but with a little twist…I have MS (multiple sclerosis).  Yes, me…a totally normal (some beg to differ) 35 year old mom from Long Island, has MS. How can this be?  People like me don’t have MS!! or do we? Yes, it’s me!!

My journey began…

Just about 2 years ago, I was going about my normal life, when I thought I had something in my eye, my left eye, to be specific. I remember thinking that I’d be able to just rub the blurriness out of my eye.  I kept saying “it feels like something is stuck in my eye”.  Well, there wasn’t anything in my eye afterall.  I thought maybe I was “getting old” and  I needed glasses, so I made an appointment at the eye doctor. I remember sitting there and the doctor saying that he doesn’t have the instrument that would allow him to see the part of my eye that he needed to see.  He sent me to an neuro opthomologist, where I was diagnosed with optic neuritis.  So, the doctor proceeds to tells me…”you have something called optic neuritis, which is the swelling of the optic nerve”…still, none of this made any sense to me, I continued to think that I was going to leave with a prescription for glasses.  The next line that came out of his mouth changed my life forever..”and, optic neuritis is often the first sign, in many people,  of an auto-immune disease”…now, this started to get my ears perked up and I was listening intently.  He goes on to say, “such as lupus or multiple sclerosis”.  So, of course, I thought he was crazy…me? a normal girl from Long Island? no, couldn’t be! but guess what, it could be!

A complete whirlwind begins…

So I go in thinking I need glasses and leave thinking I might have MS.  Immediately, I was sent for MRI’s…one of my brain and one of my spine.  I went from appointment to appointment wondering what all of this meant.  I had questions, but didn’t even know what questions I should be asking or who I should be asking them to.  The final appointment that I went to, was the neurologist, where I thought I would have all of my questions answered…WRONG!!  I went, and what I was told is that I have lesions on my brain, none on my spine and that he can’t give me an actual diagnosis.  What he decided to call what I had, was “Clinically Isolated Syndrome” …what the hell is that?? He tells me that it means I have had one isolated incident and not enough evidence to be diagnosed with MS, YET!! Since then, I feel like I have been in limbo, being monitored every 6 months with MRI’s and blood work, never knowing when the official diagnosis would happen, if ever.  Of course, because I’m just a normal girl from Long Island, this diagnonsis wasn’t going to ever come…boy, was I wrong!!

My “official” diagnosis…

In August, of this year, I went for my routine 6 month MRI.  This time was different…this time, when I got the follow up call from the neurologist, I can just tell in his voice, it wasn’t good.  He proceeded to tell me that I have a new lesion (or new activity) on my brain…and what did that mean?? There is now enough evidence to get the official diagnosis. “Please make an appointment to come in and speak about medication options”….this is what he says to me in the same breath as the news of the diagnosis. Medication?  I’m not ready! This wasn’t supposed to happen! I was just supposed to have MRI’s every 6 months for the rest of my life, with no changes! I’m just a normal girl from Long Island! This wasn’t supposed to happen!

Slowing things down…

Ok, so I got this diagnosis…now what?  I needed to slow things down a bit.  I needed to do my own research, in my own time, in my own way, so I did. I read up online about all of my different medication options, I read through the information the doctor gave me, but most of all I spoke to people, real people, “normal” people who have MS.  What I found during this time, was that if you talk about what you’re going through, you might find someone else that is going through something similar who might be helpful to you, and in my case, I found 3 people! And guess what? These 3 people are normal people, just normal girls from Long Island (just like me)! In terms of advice, they all had one thing in common…their neurologist. They all see the same neurologist, whom they really like and trust.  I decided to go see him for a second opinion and I really liked him too. After meeting with him, I left feeling like I understood “MS” alot more.  I left knowing things that I didn’t even know I didn’t know (if that makes sense).  I also left, having made a decision on what medication I would take.

The next step…

So I chose to take Copaxone.  Its a daily injection, and given it is effective for me, I will be taking it for the rest of my life…FUN TIMES! So what’s left to do? A couple of baseline tests to take, figure out the system on how to order the medication, and get in touch with the nurse who will be coming to the house to walk me through and show me how to give myself these injections.  The appointment is made…I start this medication on Friday, October 5th at 1:30pm.  That is when my life will truly feel different from the “normal” I know.

Now that I’ve caught everyone up to where I am on my journey, I will try to keep this blog current.

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