f-a-t-i-g-u-e

Once again, I woke up this morning just as tired as I was when I went to bed. If someone could explain how this is humanly possible I would appreciate it greatly. I just don't understand how that can happen. 

Of course because being exhausted isnt bad enough, every inch of my body hurts...my muscles ache, my joints burn and it even hurts to type. I think the burning is the worst though...just not good.

Ok bed soon...after watching some House of course.

people

Some days I am just tired and I dont have any real interest in dealing with people...kinda like today...

but at the credit union my dad and I ran into his brother and his wife...his brother is also a retired firefighter like my dad...but anyways when talking to my aunt she had this to say "Steph you seem to have put on some weight"...

The last time she saw me was when I was like 1 week outta the hospital and still barely eating solid food...I was down like 20 pounds...and well yeah I am gonna gain it all back...

Ugh  ugh ugh people

In other news...I really appreacite comments that you fellow bloggers have left and I know stalk your blog entries :)

baseball!

I had a great, great day...like super super super... haha umm so I cant get all my words out but I'll try to fight back my giddiness to write this...

My interview was so not a interview, I walked in to the store, met the manager right away and he brings me back to his office to say "I'd like to bring you aboard..."

It took everything in me not to respond, "ooooooooh we are going on a ship, when do we set said?!?" but alas I refrained...

Anyways pending my background checks I will start training next week! So that is super awesome! No more conversations with my dad on how I need a job haha...

Tonight my mom ( who is a big Yankees fan) wanted to go see the Chiefs vs Scranton WB...triple A, but since Scranton is the farm team for the Yankees she wanted to see a few of the players. I got dragged along but it was fun, there were only like 1000-2000 people because it looked like it was going to downpour at any moment. We also got tickets 2 rows behind the dugout for the cheifs...so great view...even though the beam blocked the umpire...I still got a great view of the players.

During the game for a bit, I was texting the kid from Rochester, the one I have a date with...anyways it was cool and I dont know its interesting...

So now I am obviously home, but I am super excited, giddy...ect. because I was signing on to my computer and I get this text from him saying that he was thinking of me and sweet dreams...ok so he just won any apprehensions over lol. 

Off to read before bed, hopefully the humid dissipates cause ick its gross...

tired

OMG the fatigue is killing me...a very slow and dull painful death at that. I get 8-10hours of sleep and I am as about as wide awake as if I had pulled a all nighter, or ran some crazy marathon. 

I have a job interview tomorrow at 10...ok Rite Aid, no biggie, just smile and answer the questions, I am not concerned about that one...

I uh yeah have a date next week...me...a date...yup I think...its with the kid I met at my last Tysabri infusion...so we have been im'ing eachother through facebook or what not, and I dont know why but I got bored and thought I would text him quick cause I had not heard from him in a few days...that was mistake #1 I guess...so we had a super awkwards...awkward on my part at least, conversation...he told me he thought I was cute and I felt like replying, "boys have coodies!" But alas I refrained from any statements along the "boys are stupid, throw rocks at them..."lines. Anyways he wanted me to drive to Rochester, because of course I cant find someone in Syracuse, he was kinda cute, offered to pay my way their and back, of course I refused because I am a halfsies kinda girl. But yeah I haven't dated since uhhh Sept...so that should be uhhh weird...

I hope he enjoys super awkwardness...cause it is what I do best :)

Off to read The Perks of Being a Wallflower...and then my favorite,  sleeeeeeeeeeeeeeeeeeeeep

go away summer

I would like summer to go away for a few more weeks so I can have some more time to hit the gym and fit into my summer clothes...we are going out to my parents friends camp today and well like none of my shorts fit....so old soccer shorts with the ever so wonderful elastic drawstring waistband. 

Thank you Crisco, Keith J. for your oh so wonderful creation...(<-- I think he created them, or he at least owns the patent) 

So anyways, I'll just blame my recent predicament on the months of steroids for now....

over tired?

--Uhh I dont know how much sense anything makes below...I apologize

Maybe it is because I stayed up to late or something but today had been a weird day. My brain and my body are not working well together. 

My mind says "move! there's a wall there"...and my body walks into the wall. 

My mind says, tight right turn and it takes a whole lot of concentration not to go off way into the shoulder. 

I see the light that is yellow and know its turning red, and yet I still have to slam on my breaks to stop...which of course flung half a coconut cream pie with 3 inches of meragine (idk how to spell it, the white fully ( <---- I go to write fluffy and instead I write fully...maybe I am over analysing this but wtf ) stop (<---but look here I meant to say stuff...and I wrote stop)...maybe it was whip cream...who knows) stuff into the back of my seat, of course it was in my dads car so cleaning that was a blast.

I put 11 candles on a birthday cake for a kid who turned 9.

Who knows, but I am going to be early tonight and hopefully be better for tomorrow. 

late post

some days i just feel as if I am just sitting waiting for my MS to attack...like today, like tonight, like last night....everything turns negetive and i just wait...I dont want to spend everydays fearing the future. It is not fair...

who knows

I am in a super bad mood, and if you are one of those people who  belive that bad moods are contagious, well stop reading...there you have your warning.

Those who choose to continue, thank you for listening to me complain. Now without any further ado, my blog.

It has been a while since I have posted, and well I have been in a nasty mood for a while. Maybe it is the fact that school is over, that I am home and am home for hours upon hours usually alone doing nothing. It is rather depressing and I can only keep myself entertained for so long. I am pretty sure I could be compared to like a 5yr old, I need constant companionship, I just idk what I need but there is something missing.

ugh useless blog tonight, i cant finish it, i am in tears. 

Umm

Umm so I am not sure if I am just tired from the weekend or what, but I am absolutely exhausted. I went to bed super early last night, got up this morning and attempted to head to the gym. My head was a bit fuzzy and of course it showed when I back my dads car out of our back driveway...I sorta kinda hit the edge of our fence with the cars passenger mirror...big whoops. The mirror cracked, the glass popped out and flew threw the air like I was watching it in slow motion...

Luckily my dad...aka Mr. Fix-It can really fix just about anything and he did wonders by putting the mirror back together. I did however obtain the nickname of Grandma because my grandma has knocked off and demolished 3 passenger mirrors in the past 2 or 3 years...however I do contest that nickname because she completely demolishes her mirrors where I umm just knicked it.

Anyways, I eventually made it to the gym but fatigue got the best of my workout. I dragged myself all day but I hope the fatigue starts to diminish soon.

shocked and confused

I had stuff to write about but my mind is stuck on a bank robbery. Usually they happen, and I read the news and just think, what an idiot... but this time I was reading the news and saw that the latest bank robber in my area had been caught...something though caught my eye...he had the same exact name, description, age of my 10th/11th grade math teacher.

http://www.9wsyr.com/content/news/onthelookout/lookout_story/Arrest-made-in-Minoa-bank-robbery/cybkl5Lp902sQkSv7EHBjQ.cspx

I dug a little deeper and sure enough its him. The guy who taught me math for two years. The guy who was one of the few people I talked to after my cousin died...the guy who got married and had two kids...the guy who is only 28...wtf

I am so confused.

Rochester

Yesterday around 1, I drove out to Rochester, where my best friend, Steph, lives. All in all it was a 104 mile drive, and then I was lucky enough to be stuck in traffic on the thruway for an extra 30ish minutes going a whooping 5 miles a hour. 

Steph and I went to the Lilac Festival, which was alot of fun. I am not a big flower person, but I don't mind the smell of lilacs once in a while. Plus, they were really pretty and it was nice just to get out and have some fun. We met up with two of Steph's high school friends and grabbed a afternoon snack and hung out.

We headed back to Steph's house and had dinner, which I always enjoy with her family, everyone is so down to earth and its just nice. Last night I was supposed to have the 3rd MS group meeting...well my directions took me to the wrong side of town, and I got lost in Rochester. The place we were supposed to meet was new, so I couldn't find the address...well I found what I thought to be the address but just ended up wandering around. I finally found it about 30ish minutes late, walked in a didn't see anyone I recognized. By that time the 5 1/2ish hours I had spent in the car caught up with me and I just lost it. I was tired, and frustrated and had to call a friend to calm me down. 

So, I ended up driving back early and luckily I was left a spare key for the house because no one was home at Stephs for about a hour...but when everyone got back we spent the night gathered around the tv watching Lost and then Steph and I stayed up late catching up on everything that has been going on.

Fast forward to today...I woke up sick, nasty nasty sick, but luckily everything cleared up before my trip for Tysabri. It was my 5th infusion and it went well. I usually sit and listen to my ipod  but this time a kid started talking to me and we started comparing horror stories...I was surprised to find out that he did not have MS, he actually has Guillain- Barre syndrome, which is a debilitating nerve destroying syndrome...it become prevalent after getting a flu shot this past February...Only being a year out of high school him and I had alot in common so it was good to actually have someone to talk to during my treatment. As we both had neurological disorders in common we swapped stories on life on the 5th floor of the hospital as well as just how we explain our issues to friends...we swapped info so I guess I will be having a new facebook friend and maybe coffee house buddy in the future...

Now I am back home after a busy 24 hours...time to drink some fluids and relax and the rain starts to pour down.

i'm pumped

I am so excited, so super freaking excited. I had a horrible day at work yesterday, my tolerence for that job has been high...but not anymore. I cant take it at all. As I was filling out job applications I was telling my parents everything I hate about it and how it just adds stress and my dad cut me off mid sentance and said, "just quit." That was what I needed to hear. So I will work this next weekend and that will be it. The end. Thank god. I would like to say that I loved this job, but it has always been just a job, I met some cool people along the way, but it is just a job. I am looking forward to a job that does not let drama get dragged out of work. I cannot wait! 

The good news is that my brothers best friend works at Rite Aid and his father is some sort of manager man guy...and hopefully that will be my in, because I certianly need something to keep me busy this summer. I dont wanna sit here while my hair just falls out!

i'm up a little too late but...

Here is my problem. I am currently on Tysabri, my next infusion is scheduled for Thursday morning and it will be 5th. Ever since I started Tysabri, about the week before and a few days after I get it I notice that my hair decides it doesn't like being on my head anymore and well more than a normal amount seems to fall out...any one else notice this...maybe its all in my mind...but I can see the shedding on my floor...

uhhhh i forget something

umm sorry my mind isn't functioning at the proper level...I kinda sorta forgot to post the link to the you tube video I talked about in the previous blog...so here it is http://www.youtube.com/watch?v=0v3d6SFcDys

me + work = disaster

I hate my job. I hate my job so much that on the way home from work I stopped at Michael's and Rite Aid for a application and filled on out for Delta Sonic.

I cant even explain it because I am just so frustrated with things. 

In other news I discovered this you tube music video. It is a combination of Taylor Swifts- Love Story...which I love plus Coldplay- Vida La Vida ( whom I happen to be seeing live June 1st!)...well this man arranges these two songs together and it is played with a piano and a cello. I am in love with it, and I typically cant stand just straight music...but this, this is something amazing.

Short and simple

Today started out good, rode my bike along a lake and cleared my head a bit. Tonight went downhill fast...empty house with just me for the night lead to a disaster...I have decided I think too much and I can work myself up over anything and everything...Steph knew there was something up but honestly I don't know whats bothering me. I should know, but something doesn't feel right...

( you choose a title )

I cant even title this page because my mind is scattered. I had a normal day...I did get my grades..and well I made Deans List! Yay, right? I am supposed to be excited, I think. The thing is, my family and their friends all doubted my ability to go back to school...and yeah I proved them wrong, but I just imagined that feeling would be more exciting.

I headed to the zoo today to fill out paperwork that I was missing so I could be re-instated at my job. I met with the HR lady, who was nice, but she was a bit confused as to why I left in the first place. I explained that I was in the hospital and my prognosis was looking iffy for being able to talk...its weird when I tell people that they either are shocked or they pretend like I am joking or something...she just stared and was like, well I am glad your better...so I was like, uhhh yeah me too. Then I was questioned about my ability to preform all the required job tasks. I have done this job since 2004...I think I could do it with my eyes closed, but she made me question things.

Like what happens when I get shaky and I cant control it...or I trip because my muscles decide they don't wanna participate in anything? So once again I am left to fear the unknown. I can do it, I know I can, its just the unknown that scares me to death.

I was talking to a friend earlier and I was talking about how I was going to Rochester next week to visit Steph...and of course I am going for Tysabri as well...but I didn't mention that...and the next thing I blurt out is how I don't want to take Tysabri anymore. Of course he is like a bit worried that I am going to do something like stop taking it, but I hate that people don't get the fact that I HATE being tied down to a drug. Like if I don't take it what happens, I just have relapse after relapse...

So to my days where I was a math major I will crunch some numbers, if I live till I am lets say 80 and I magically stay on Tysabri my whole life, and PML doesn't kill me first...I will have had 708 Tysabri treatments...at about 3 grand a pop that is a total cost of  $2,124,000...not counting the MRI's and bills from neurologists...looking at numbers detracts me I think...I finally stopped crying working on my math...

I know that no one wants to be on a drug for ever, but I want my MS to go away. I honestly do, I put on the strong front so well, the Superwoman persona...the I can  do anything, the indestructible act so fricken well, that I believed it for a while...hell, I even  have a superwoman logo tattooed on me...

At school I was distracted from negitive thinking...at home I am the only one awake past 11...I sit and think, and thinking is my downfall.

But what happens if I spend all my time obsessivly worrying about MS that I forget to live my life...I am afraid its passing by to fast and I am just sitting on the sideline with my head between my knees holding back the tears...

"You wanna run away, run away

Just get on the fucking train and leave today

And it doesn't matter where you spend the night

You just might end up somewhere in a fight, in a fight

Or calling your room on a concrete shelf

Fighting all alone, with yourself, with yourself

And you just wanna feel like a coin that's been tossed

In a wishing well, a wishing well

A wishing well, a wishing well

Well you're tossed in the air

And you fell and you fell

Through the dark blue waters

Where you cast your spell

Like you were just a wish that could turn out well"

This song has been playing on my itunes all night, I dont know why but I am obsessed with the lyrics...I just get it I guess...its called Wishing Well, by The Airborne Toxic Event

As I was cleaning out my room in attempt to make room for my college stuff, I came across a bag full of things I had in the hospital. I was flipping through the papers and I found two laminated papers, one being a letter board and another one that has phrases that are useful for everyday life. Finding those immediately brought my back to mid Nov as I remember that exact moment in time when my speech therapist handed me these.

I had been in the hospital for about a week and I had received steroids around the clock as well as one plasma exchange treatment. My doctors were all bracing for the worst as after the week I still couldn't talk. I couldn't make a sound, I was trapped in hell and I couldn't even express it.

My speech therapist expressed her concern and started bracing me for the worst. But honestly how do you sit there and tell a 20 year old she probably wont be able to talk again...She then handed me these boards with phrases and letters and I used them constantly...but having a conversation with a parent or doctor is impossible when they cant keep out with your fast moving fingers. It was the hardest thing I have yet to go through and finding the papers makes me so grateful that everything worked ed out in the end.

bye bye junior year...I miss you already

I am officially done with my junior year of college. I spent last night with my roommate, Steph, watching Bride Wars and making friendship anklets. It was our last night that we will have ever shared a room and honestly it was kinda weird. I have lived in the same room as her for two years now and I can honestly say that I will miss it. It is just really nice to have someone that you are so close with be there all the time. Having her around makes it really difficult to go to bed upset, especially because we always end up having some kind of random laughing outbursts at random times throughout the night.

I spent all of yesterday afternoon packing. I will say that packing and I do not get along. I was miserable, the heat in our room was on, and of course moving all my stuff around really was exhausting. I had to stop often to take a breather and Steph helped me get my stuff in my car. I am used to moving out stuff randomly throughout the semester, but this semester I moved out everything except my fridge in one trip. Today, I helped Steph load her car,  I figured it was the least I could do...

As I write this blog I am realizing how I don't feel right while writing it. I am on the verge on tears as I look back on the past few days and this semester. As much as I complain about my suite mates, they really are my best friends. 

Steph and I both checked out at the same time today, 1PM on the dot. As I handed in my key to the RA I just thought, "oh my gosh...this really is it..." I hugged everyone goodbye and Steph and I both headed to our cars...as we split apart I remembered that I will see her next Wed, so it wasn't too tearful...but I got in my car...started to drive away and then the tears came...kinda like they are now...

I know I will see them all again next semester, but it is just hard to separate from my 3 best friends, the 3 girls that have helped hold me together, who helped cheer me up whenever I had a bad day, and the ones who would sit and listen to me ramble about my fears...

It has only been a few hours, I have already had a random skype convo with Steph, but I miss them already...

My friends at school get me...my friends at home don't...my friends at home have drifted away from me as I have drifted far from them...it was for the better...I know that... but it is when I come home that I feel most alone.

MS walk!

So today, my suitemates and I walked in the MS walk in our area. We had a blast. We had gone shopping yesterday to get our outfits all finalized and the pic shows us all decked out. So from the left to the right it goes, Hannah, Steph, Me aka Steph, Hannah. So we had on the shirts my mom got us that we got to design, our orange soccer socks and orange headbands. We had a few comments on our outfits and stuff and I think we stood out a bit, especially with our socks. 

The morning started early, at 7 am when we woke up to the sounds of our alarms. We all got ready and left around 8:15. We wanted to get to the site by 9'ish to register early and such and of course, get dibs on the correct size shirts! After getting our shirts and bags and such, we hung 

around, got ballon hats and Steph was filmed for the local news when she was getting her hat fit 

to her head...one of the Hannahs and I also got some air time in the background of a shot...it was 

kinda cool. We were a small team and it is always nice to be noticed. We even were the firsts ones tow alk through the start line at 10am. 

Steph and I had on long sleeve tees because weather.com lead us to believe that it would be chilly but 

after

 we started walking it quickly became warmer. The routes that 

they had were either a 3 or 5.5 mile walk and we decided to do the 5.5 mile on. After walking up a few hills, seeing Steph get her undershirt off without any trouble, I decided that I 

needed to remove my long sleeve tee shirt. Well... I tried really hard and I needed Steph to help me...it is really hard to get out of one shirt all while staying fully covered with the top layer. 

I am glad though it was not like a billion degrees because with the 60ish degree weather and some sun and the 5.5 miles, I had 10 swollen fingers and a nasty headache by the time we finished. I really thought I was going to die when we where going up one hill, my heart was beating so fast that it just seems like there was just back to back beating at 100mph. 

All in all though, we had a blast, and raised a ton of money...a whopping 845 dollars...to be exact!!!

Oh and I added this picture because yeah look at 

my face...I am such a pretty pretty picture poser...and it was at the finish line.