Some say change is a good thing, but personally I don't like change. Actually I hate change. And this past year has been nothing but change for me. I'm trying as hard as I can to adapt, my life is changing. I have to live with that. This is one of the changes or additions to my life.

It's called Rebif, it is a DMD or a disease modifying drug. I have to take it three times a week, which means I inject myself three times a week. It's a change that I've definitely had up and downs with. It's been a really hard journey so far but I'm hoping this one change will pay off in the end. I mean some say change is a good thing..right? So this change could be a good thing for me.

Today it hit me how truly unhappy I am with my life right now. I'm trying really hard to be happy but lately it's become so hard. The people around me aren't being a help at all. I'm trying so hard to just survive. I'm not looking for a happy ending anymore, just a couple good days where I can feel good about myself. But every time I think I'm having a good day something else comes and knocks me down. It seems like I'm having more and more bad days, when I could really just use one good one.

I hate this feeling.  I'm not sure I've ever felt this alone and empty before. Like it's me against the world and I'm sure anyone is on my side. I'm so tired of fighting and I'm not even sure what I'm fighting anymore. Am I just fighting against myself? I don't even know. But I do know I don't think I've ever felt this bad about myself. I don't think I've ever felt like I'm disappointing so many people like I feel right now. I can't even find the words to say something to them. Mainly because I feel like over-reacting. But what do you do when the people you were closest to, suddenly turn mean...at least that's the way it feels.

I just really want to be happy again.

I was talking to a friend today, she said she can't wait till I'm all grown up and have graduated. I said I want to go back to when I was 15 and she asked why. I said because that was a time before anything had happened. She said I'd still have the same fate. But would I? I can't help but wonder.

That's one of the things I hate most about MS, no one knows why or how they get it. It's a huge mystery.

It's just how it is

I found this quote/passage the other day and just really connected with it.

When I say I'M NOT OKAY it's not to seek out attention. I'm not doing it to get sympathy or to feel sorry for myself. I'm saying it because I need my illness to be REAL to the outside world, so I don't feel like I'm going CRAZY inside my own body. I need to TALK about it the same way I talk about my day or my plans for the week-end (which usually involve sleeping). Because it IS a part of my day, will be a part of my week-end and will always be a part of my REALITY. Please don't make me feel ashamed when I share my reality with you.

This is so how I feel, I just couldn't get it into words.

June 6th 2012

That's a date, I don't think I will ever forget. I was diagnosed with MS that day. I remember sitting in the exam room staring at the posters of brains on the white walls, just waiting for the doctor to come in. I was ready for the diagnosis of Multiple Sclerosis, but deep down I was hoping and praying that it wasn't but it was.

I remember sitting there as my neurologist told me that one of the levels  that they look at for MS turned up positive on my Spinal Tap...it was higher then it should be which indicated MS. That plus all the other criteria I fit gave me the diagnosis of Multiple Sclerosis. I sat there brave holding back the tears and pushing them out of sight as my doctor went through more information with me, like the memory test I had. He went on to talk about the specialists I would have to see and the medication I would have to pick out.

I felt like I was in that room forever, at least it felt like it was longer than usual. I remember leaving and making an appointment to come back. The car ride with my dad as he drove me to work was so quiet. I told him that he could tell my mom, he tried to tell me everything was going to be okay. I said something along the lines of "I know, I was expecting this. I'm fine dad I knew this was coming." I'm pretty sure that was just the shock talking and that I would wake up tomorrow, leaving this all behind as a bad dream.

I was my brave strong self that day. I think mostly because that's all I knew how to do. I was so used to having to be strong. I guess it just comes naturally. I kinda wished I cried that day or allowed myself to feel something. The months that followed were frustrating and hard but I continued to put on a strong front.

It took somewhere around 3-5 months before it hit me, I finally broke down and cried. I've cried a lot since then most of the time I'm not even sure why. Mostly for the life I thought I was going to have, the life I had dreamed of. But everything feels different now, somehow changed..kind of like a change in the batting line up.

10 months give or take have passed since that day. I kept telling myself you just need to get through the first year and then everything will be okay. In one year you will be okay with all of this and life will go back to normal. Well in 2 months it will be a year since I was diagnosed and I know I will NOT be okay with all of this. I kept thinking somehow it would be easier after a year had passed. But things aren't going to be easier and my life will never go back to the normal I pictured. I will always have this disease and I will always be on medication. I know that's not the end of the world and that someday I will be okay and accepting of this. I just don't see that happening anytime soon.

I'm realizing this isn't something that can be planned out. I always had a plan for my life and now it just seems like I'm winging things.But I've had help and I'm realizing that I'm not so alone and that I don't always have to be strong. That I just need to give myself the time that I really need and throw again the plan I had mapped out. And I really need to let myself feel and not just block everything out.

Oh My Bad...

I forgot, that the world revolves around my brother again. That's right so when I wake up late at 7:00 in the morning, I have to wait to get in the bathroom because 7:00 is his time. But then 7:30 rolls around and he still hasn't used the bathroom, so then I decide to get in there. OF COURSE, that's when he finally gets up and decides it's his time for the bathroom then. So now my parents and brother are yelling at me to get out of the bathroom because my brother needs it. I'm sorry I've been waiting half an hour for the bathroom when he is supposed to be in there at 7:00.

I try to talk but I'm so convinced at this point that they don't hear it because they don't do anything. They don't try to change it. It's three against one. That's definitely a far from fair fight or even a fair discussion. All they keep doing is making up excuses for him. I wonder if they even hear the words that spill from their mouths. Do they hear how ridiculous they sound? They probably do but don't care because they are so set on defending him and taking his side. I'm not even sure if it's worth it to try and keep talking.  They will never hear me, so why should I keep wasting my breath. Maybe it's just time to give up.

One of the Worst Things...

I hate that I'm sick all the time. But what I hate more then being sick is not being able to explain it. I hate the times where I feel so sick and blah that I can't explain it. Half the time I just want to cry because I'm not even sure what to do to feel better. It's so annoying.

Some how people can tell when I don't feel good and they always ask "What's wrong with you?" All I can say is I don't feel well, they ask "Why what's wrong?"....I can't even answer because even though I don't feel good, I can't pin point what's wrong. I'm tired of being sick.

April Fools Gift To My Body...

..I sure hope so. For the last three to four weeks, I've been doing so well with my DMD till tonight that is. I've gone from achy and having chills to being fine the last few weeks with only a headache once in a while to back to full on aches and chills. This is not fun!

I was so excited to finally be feeling good again. Maybe this is just a sick cruel joke from my body being that today, well technically yesterday was April Fools day. A girl can hope right? I really hope this is only a one time thing again. I was so happy to not have to deal with this again.

2 things that irk me

First, I'm sick of hearing, you shouldn't stop living your life just because you have MS. I'm so sick of the assumptions. My life now is exactly how it was before my diagnosis plus or minus some things. I don't go out to bars or go drinking because I don't want to, I've always been like that. I'm not missing out, I just don't feel the need to get drunk or even drink for that matter and make a fool of myself in front of people I don't know. I don't feel like I'm missing out on anything right now.

Yes, I feel like I missed out on things like being a kid and different high school experiences. But then I look back on everything that has happened and it has made me so much stronger.

Second, I'm sick of hearing you had to change your whole life because you have MS. No I didn't. Yes I now have to do injections three times a week but so what. They are slowly down the progression of my MS. People are stupid. I used to get upset now, I just laugh when I hear things like "What are you going to do if you are out on a date excuse yourself from the table and say sorry I need to go take my injection?". Seriously?

People make the stupidest remarks and feeling so unsupported. Instead of the people around me being positive all I hear are negative remarks. As hard as it is to deal with the people around me all the time, I'm so glad that I have found support from people at MS World. I have found a family in them. They understand and get it, they don't pass judgements.