The disabled caring for the disabled...

Well, let me tell you first off that this past week has been EXHAUSTING! Last Friday, one of the captain's from James's work went into Cardiac Arrest and has been in the hospital on life support. Then the next night... Saturday night/Sunday morning... James and I went to have a beer to let off some stress. I of course was sitting at the bar, because I can't walk around well. All of a sudden all of the guys we were there with went running towards the bathrooms. I'm like great, they are fighting someone, or something. I go back there and James, my husband, is laying on the ground in a pool of blood. 

Apparently, he was turning to walk in to the bathroom, when some RANDOM guy sucker punched him. It knocked him out, he hit the floor and split hit head open. So, this guy... just hit him for no reason and took off out the back door. So, James was rushed to the nearest trauma center hospital, and I was riding shot gun in the Ambulance. 

We get to the ER and they did a CT scan, he had bleeding in and around his brain, with brain swelling. So he was admitted to the ICU (two rooms away from his captain that has been fighting for his life). He got discharged on Monday since there was no progression in the bleeding and/or swelling. We are going to the neurosurgeon today for a follow-up appointment, to see where we need to go from here. 

He has been out of work this whole week... and has had to sleep on the recliner for elevation. So I've been sleeping on the couch to be there with him and wake him to take his meds. Needless to say, I haven't slept in my actual BED since last Friday night! 

You know what they say, "when it rains it pours". So, now you know why I haven't been posting lately, because my time has been consumed with taking care of him. His dad took off work this whole week to help me with him and the kids. Thank goodness for that. 

This morning, Jason woke up to get ready for school, and come to find out... HE HAS PINK EYE! I'm like... REALLY! What else are you gonna throw at me in the next week! James and I actually went in to the ER on Wednesday night, because he was running a fever, and they wanted to check for any kind of infection... no infection, he is having what they call a neurogenic fever? It's so hard to watch him just be in pain and sleep all the time. I guess I'm getting a taste of what he goes through on a daily basis seeing me in pain... 

Everyone is worried that I'm going to go into a flare, from all the stress that I've undergone this past week. While I'm trying to take it easy when I can, and keep my stress level down... it's still hard to keep my stress level down, with bad things continuously happening all around me. 

During all of this, I'm still trying to keep the house maintained and everything... and be there for the kids... when all I want to do is SLEEEP!

Oh by the way, last Thursday, I called my neuro because I was extremely fatigued.. I guess the Nuvigil just decided not to help me with my fatigue anymore. So I discontinue the Nuvigil, and I am now on Adderral. It's helping with my fatigue a lot, considering everything that is wearing me down. 

Well, I'm gonna go check on James, and try and get some of the blood out of his hair... the people at the hospital, stitched up the back of his head without cutting his hair, so all of his hair is matted down by the stitches... Hopefully he will get the stitches out today! 

I'm hoping for some sort of GOOD news from his neuro surgeon appointment today, but we will see. I'll keep everyone posted when I can! 

xoxoxo

Ashley

Holy Fatigue!

Hey there, I finally have time to actually sit down and blog about what's been going on in my life. I've been SEVERELY fatigued lately... and all I ever want to do it sleep. It's been horrible. I'm on fatigue medication (nuvigil), but it seems as if my body is "used" the medication I guess. So, looks like I'm calling the neuro about my options. Before I was diagnosed with MS, but yet still had MS, I was taking adderral... and I had amazing energy and it seemed as if it helped my weight as well. So I'm going to see if that's an option?

So I've been doing some research on things that can make me feel better, naturally. So, I'm doing a natural total body cleanse of all of the organs. Today is day 1, so we will see how it goes. It's a 7-day cleanse. I've heard it really helps out your energy, and so far, I'm not wanting to pass out like I normally am, so that's a good thing, right?

So yesterday morning, I woke up and things were kind of fuzzy as far as vision goes... and later in the day I got EXTREMELY tired and starting getting double vision. I'm thinking that I have just been over doing it when I'm actually awake enough to do something as well as the weather change. I feel better today, vision isn't 100% but it's not as bad as it has been before. When I couldn't even use my phone or get on the computer or drive.

I had my Tysabri infusion last week and I made a friend! I was excited... of course she isn't my age, but it's good to speak to someone about my issues face to face that can relate. So someone isn't just sitting there and starring at me while I'm explaining how I'm feeling, they actually "get it".

I really need to get on the ball with house chores, but I just stare at it instead... it's exhausting just to even think about all the things that I "need" to do... but I just can't convince myself to actually go through with it and get it done.

I'm really excited about going to the AAN meeting next month in New Orleans or as I call it "Nawlins". It's closer to home, so it's like I know what to expect and I won't be completely lost in what I'm doing. James and I have been on the hunt for pink camo duct tape so we can decorate my cane, because I have an obsession with pink camo... and I don't like walking around with something that's "boring" looking lol.

On another note, Jason has been talking to me about Family Fitness Night at his school for like the past month. It's tonight at his school and he really wants me to go... and I'm just thinking to myself, "how in the hell am I doing to do it?" Because I don't want to embarrass him at school because I'm not able to be like the other "moms". And let me tell you, I've been up there and those moms are all like sticks and have perfect make-up and hair. When there are like "dress-ups" at school or something like that, these mom's go all out... and I'm thinking to myself, How do you have enough energy to do all of this!!!

I guess I just don't want to come off as a "bad mom" because I can't do everything that they can... and then the parents not want their kids to hang out with Jason outside of school or anything like that. Jason has been talking about wanting to have a sleep-over and I want to let him. But of course, I want to get to know the parents better & finish with my house "make-over".

I've been looking into summer camps for Jason as well, so that he isn't at home with me all summer long bored. Because I know that with the Texas heat, I'm not going to be able to keep up w/ his energy levels. And I don't want him to get bored or mad at me because I "can't" do things that he wants to do.

I keep thinking to myself what I can do to make things go back to the way they used to be, when it comes to doing things with the kids. And it's like, maybe if I lived in a different climate, maybe if I did this, maybe if I did that... and it's exhausting even thinking about it. I think that today, I'm going to enjoy my quiet time while the kids are at school and James is at class... and just rest so that HOPEFULLY I have energy later on and can go to Jason's Family Fitness Night!

I do know that I need to get some sort of laundry done or else we aren't going to have any clothes to wear. My mom is coming up today and staying the weekend so I know that she will help me out and I really want to get some things done while she is here... like finish cleaning up and organizing the upstairs, so that it can be a "guest-room". We will see how far I get to getting anything done that I want to do. Because my list is a mile long... and I think I could maybe get ONE thing done a week, MAYBE!

So that's my check-in. I'm going to try and look decent to take Luke to school... I wish I could just go everywhere in my sweatpants, sweatshirt and no make-up and hair up in a pony tail... lol

xoxoxo
Ashley

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: http://conferences.msworld.org/ectrims-2011

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:
http://www.youtube.com/watch?v=TONtM5YX_Sk

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!

xoxoxo
Ashley

Looking Back...

Lately, I've been remembering my life before I got MS... how active I was and how I was healthy and motivated and always doing something... and I could get by and no sleep, easily. Those were the days, right? I do miss the way things used to be... I wish I could do the things I used to do. Being diagnosed with MS though, has shown me not to take things for granted.

A lot of people live their lives feeling invisible from any kind of wrong doing that could come their way. That was me... I mean, I used to complain about some things in life, but now it's like... why did I complain about the littlest things... They seem so minor now, compared to what I have to go through these days.

With March being MS Awareness Month, I'm really trying to think of ways to help raise awareness about MS. Any ideas? I want to do something different that will stand out!

On another note... Sorry I haven't posted lately. I've been super busy & when I haven't been busy I've been really fatigued so when I get time to rest, I take it. Then I've been dealing with a dog bite. Two of my dogs got into it and I tried to break it up and my leg got in the middle of it and I have a deep puncture wound on my leg. If it's not my MS, it's always something right?

I'm still dealing with the constant weather change of Texas. I swear, I wish I could just pick up and move but not leave the people around me at the same time. While it's snowing in a lot of places it's like mid 70's here. I love the 70's weather, but I wish it would just stay that way for a little bit!

Now on to Tysabri... I haven't really had the energy boost that I had last time... maybe it's because I've been doing too much? I don't know. I wish it would come back though! Lately I've just been wanting to sit on the couch and not move! Just sit here and play Angry Birds all day long. lol

I've had something on my mind though.... I'm wondering if Mitt Romney actually does become our president... I'm wondering if MS will have more attention! His wife has MS, so that's just why I was asking.

You know, used to spasticity was my biggest symptom of MS, but now I'm thinking it's fatigue! And of course the cog-fog that comes along with fatigue. Yesterday morning, I put the juice up in the cabinet with the cups! Can we say brain fart?

I'm gonna go try and get some things done around the house!

xoxoxo
Ashley