Thursday, March 15, 2012

Update on ME!

So, if you didn't know this before.... I'm going to tell you now. Last year I went to the ECTRIMS 2011 meeting in Amsterdam, Netherlands. It is the biggest MS meeting of the year, and next month I'm going to the annual AAN meeting, which it's not just focused on MS, it's about neurology in general. It's going to be in New Orleans, LA and I'm super excited.

If you want to check out what I did last year you can go to:

So basically I've been preparing for that trip. My husband is going with me again to help me get around, especially since I will have the whole video equipment with me. Louisiana is my neighbor state, so it's not going to be as much of a culture shock, like it was when I went to Amsterdam. So, sorry I haven't been posting much lately, but I've just been preparing for the trip because I want to make sure I have everything in order.

On another note, I checked in with my lawyer about my appeal with social security, and I'm waiting on a date to be set for my appeal pretty much. Now I know that can take a while, but I'm just like... c'mon already! It's like, they can say "denied" real fast, but when it comes to appeals it's this big waiting game.

Today I'm going in for my 3rd Tysabri infusion. I didn't get "knocked out" last infusion like I did with the first, so that's a good thing. I think I'm finally coming to the realization, that when my body says I need a nap, I need to lay down! So I've been taking more naps lately.... and I feel better. I guess I just didn't like to take naps before, because I felt like I was giving in to my fatigue.

Since my urology appointment, I've been doing better in that whole area. I was put on Vesicare, so I'm not having to change clothes like I was before... so now I can just focus on my son not peeing himself! lol

On a good note, Texas has been getting some much needed rain... I'm not gonna complain about that rain EVER, because of the drought we had last year and all the fires we had to deal with. So, bring on the rain!

I've been trying to find summer camps for my oldest son, Jason, so that once he is out of school for the summer, he isn't bored and tearing the house down.

Did anyone see the coverage on the Today Show about MS Awareness Week? Here is the link if you missed it:

I did have someone ask me, how I can be so open in my blogs about all the personal things, like all the symptoms I experience that no one really likes to discuss. And the bottom line is, NO ONE likes to talk about it because they feel as if it's embarrassing and it's just not something you let just anyone know. Well, I say, screw it. I'm not gonna sit here and act like I'm not bothered by those embarrassing symtoms when I am, cause I want other people to know that it's okay to talk about it and that they aren't alone in experiencing it.

I also wanted to discuss the whole people "hiding" their MS.... Like I guess I don't understand how you can hide something that is life changing and something that is a big part of your every day life? I have MS and I don't care who knows... if someone doesn't like that I'm MS and Proud... they can just go some place special... lol

When you have MS, you need to be the voice of it. You need to speak up and let it be known that this disease is out there, and there is no cure. I don't tell people because I want them to feel sorry for me, I tell people so that they understand why I am the way I am at times... So there is no questions as to, why I'm sleeping, or why I walk funny, or why my body jerks at times. Because if there is no explanation as to why I do those things, then it just seems like I'm a basket case.

Letting my MS be known to everyone around me has really shown me, who my friends are and who actually cares. Have I lost friends because of it, yeah... did it hurt, hell yeah. Did I really need those people in my life, nope... they don't deserve to be apart of my life if they can't take me for who I am. I don't care if I talk about MS a lot... I don't care if gets annoying to some people... because MS is a big part of me so it's hard, not to talk about it. I mean if someone was diagnosed with Cancer or something, they would talk about it... because it's a life changing event. Just like getting married, or having a kid.

I honestly think that people don't like me talking about my MS around them, is because they are scared or they just don't know how to respond. It's like, take your butt to the internet and do some research... or ask me to help you find out what exactly it is... don't just run away from something because you don't "get it" . That just makes you a chicken.

I also heard that women who are diagnosed with MS, their marriages end up in divorce. Well honestly, if "the man of the house" isn't strong enough to live with your MS, he isn't a man at all. He is still a little boy that has a lot of growing up to do, and you are better off. So don't sit here and feel like, MS has ruined your relationships with others.. because honestly, it has just shown you who really matters and who can just go to hell.

Anyways, I need to get ready for my infusion, or as I like to call it, "My Vacation"... My 2 hours of no kids, no house work.. just time for ME!


1 comment:

  1. you go, girl! I call my infusion "my blood-letting"! It's time to get ready for mine now!
    good job, Ashley!