Wednesday, April 29

munch munch munch

Ok so, I am stressed. Stressed probably does not sum up my current state of being because I must be five stages past stressed, but alas thinking of a term to define that stage is stressful in itself. I had my accounting final this afternoon and it went well. I have my consumer behavior final tomorrow at 10am. 

So I was supposed to have my CB-consumer behavior- final this morning at 8am. I didn't go, I had talked to my professor last week or so about postponing it to the day after. Some of the people I know took this a a cop out I guess, because they gave me crap about not following the "schedule." Well people, if my body followed my schedule I would not have even came across this lil itty bitty thing called MS. Both my professor and myself decided that it was best for me not to stress and having two finals in one day would very well likely put me over the edge. Well, I am sure that's not what happened line by line, but I expressed my concern about being overwhelmed and tired and he agreed. He has always said right along that number one priority is health.

Anyways, I have been studying now all  afternoon and most of the night. I used to be able to read a definition a few times and just know it. My brain and I do not get along, it refuses to play nicely and I find myself reciting definitions till the cows come home, and still I can not seem to recall them five minutes later. Of course, I don't live near the cows, so maybe I just don't know when they are coming home, or maybe they are never coming home...Either way, I am left frustrated about my brains unwillingness to soak up definitions that I need to know. I did bad on my last test which I will give some credit to the fact that I had the flu and my body and mind was not cooperating. Anywho, I will stop blogging for now and return to definitions...but since tomorrow is my last real final, expect some real blog action happening in the near future...

p.s- I forgot to mention the title- crunch crunch crunch. Well, when I am stressed I tend to munch on crunchy food or actually anything that is tasty and digestible...finals week usually results in me gaining five pounds...

Tuesday, April 28

welcome to hell. *cough cough* I mean finals week...

Finals week. My least favorite week of the semester. The stress is overwhelming and all I can seem to do is study. I studied for like six hours today. I have a final at 1:20 tomorrow, it is in accounting and it has me stressed. I am not sure if it is the two finals themselves that I have in the next two days or if it is the fact the word "final" has been engrained into my brain to result in fear and absolute terror? Who knows really, but what I do know is that finals test you on way to much. 

( sorry I get off topic here...feel free to sick down two paragraphs to finish the week from hell blog... but the story below is a bit weird too...)

I went to the Roost tonight. It is the place I passed out in last week, but I had a craving for mozzarella sticks so I trucked my way over. When I walked into it, there was just three workers standing and talking,  their backs turned towards me. Well, one of them turned around and as she said "hello" she started to stare. A full on intent, worried stare that actually made me feel very uncomfortable. She then started going on and on about how she was so worried about me and blah blah...well I replied saying that I was fine, but I had no idea who she was. Well apparently she was one of the workers who was there when I passed out and tried to keep me awake... I feel bad because I came off like a jerk, but honestly this woman that I didn't know starts saying all these things about me, well yeah I was going t be a bit freaked out. When I got back to the room I told Steph what had happened and she thought it was funny. I just wonder how many people know...

There was also a email circulated today that I found to be rather amusing. Our school has a team for the upcoming MS walk on Sunday. I found out about this after we had already formed a team of my suite mates. The emails were always vague, such as MS affects so many people each year, but nothing ever about our campus. Well, today the email said how MS affects many people- even this year one of our own students was diagnosed. At first I was a bit surprised, I thought that someone else had been diagnosed. Well then I realised that the person writing the email was my former basically the one diagnosed was me. I had to stop working because of my flair-ups. Someday I would be very curious as to how many people MS really affects...not the bullshit number of 400,000 each year, because no offense National MS society, I do not believe you. Your numbers have not changed and I am sure they should change. There are more accurate numbers for a vast number of other things, why isn't there for MS?

Anyways back to my finals week from hell blog...

My two suite mates do not have tests tomorrow so their willingness not to be loud has truly shown through. Steph has a big test tomorrow, but instead of quiet, all we hear is laughter and yelling. It is hard to concentrate, and I have given up, I know I will be studying in the morning so I do feel OK about giving it a rest for tonight. However, Steph has more finals than I could imagine and it is weird but my suite mates utter disregard for being quiet leaves me quite upset. It must be the mood or the stress, but I just feel as thought their should be some level of respect. I am quit when they study, I only ask the same for when I study. Seems fair...

I was supposed to have a final tomorrow morning as well at 8am, but I talked with my professor and made some "reasonable accommodations," meaning that he is going to allow me to take it on Thursday because he, like me is afraid that if you stress me out too much there is a great likelihood that I will collapse during one of my tests. I realize that the goals of my professors is not to corner me into the worst possible situations but I always had a hard time that they are really there to help. I always used to view my professors as this forces not to be reckon  with. I was wrong, the past months have shown me that they do care, they are there to help, to listen and to help you succeed. I feel blessed to say that my professors truly care about me.

Last night was the first night that I actually slept amazingly well. I fell asleep to the song 12:59 Lullaby and for some reason that song brings me into this mindset that I just feel at ease in. I am surprised at my own blogs lately, it seems as though taking a few days off has fueled my fire to get back into writing. I noticed that when I neglected blogging I just felt jumpy and my thoughts were off track. When I blog, it gives me a chance to re-visit the days events and make sense out of things that I didn't really have a chance to investigate. I can actually say I enjoy blogging and I enjoy the sense of calm I get after I hit the publish post button. When I press it, it is as if my thoughts and fears go away for awhile, they take a much needed break and I love that feeling.

Monday, April 27

umm time flew by

Today was my last day of classes. I still have two finals and of course my ambition to study has flown out the window. Tomorrow I have the whole day to study for accounting and then another couple of hours on Wednesday before my test to get some more review in so I am not too worried. Tonight we have Midnight Breakfast, it luckily starts at 11PM, because I don't think I would last much past 12.

Now for my ever so elegant blog...Today there was a high of 86, you know that heat that makes it feel like you are suffocating. Luckily my classes were short so I didn't pass out or anything. Some things I did notice thought with the hotter than hot heat is that by mid afternoon my body definitely wanted to shut down. I came up with this formula during accounting and then simplified it my consumer behavior class: heat + humidity = MS Nightmare

I am rather tired and have chills and my legs kill. So I am just crossing my fingers it is my body just not agreeing with the heat and nothing serious. I need to make it through the next week and then my body can take a break. 

I was trying to think of some super cool topic to talk about so that I don't just ramble, but I guess I will talk about how in life things are thrown at us, and you have to learn to roll with the punches. So obviously I never expected to get diagnosed with MS. I guess no one really assumes they have it until a doctor tells them. Some people I have met talk about how they had a inclination that they had MS before they were truly diagnosed, but I know for me, I was in utter and complete shock.

I will never forget the day in my hospital room, mid afternoon, with two neurologists confirming what I had been told in the ER that I did in fact truly have MS. From their everything really was a blur, apparently my parents and doctors decided that it was best to drug me. They pumped my views full of Ativan to treat the anxiety, well it treated more than anxiety. I was a happy camper and was so out of it. I found everything to be funny and to be amusing. I never really had to deal with the fact that I was just diagnosed with this life changing thing.

The three weeks where I was out of the hospital and the in between time between flair-ups I was left to think and to become completely depressed in my dorm. It was a awful feeling to be dumped back at school, not knowing what your body is going to do next and not knowing what MS really was. During my second flair-up and my two and a half week hospital stay I guess I became more aware of what was going on. While I had my ups and downs, I realised that the more downs I had the better.

I am not going to lie, having four rounds of plasmapheresis, two which were back to back, knocked my down father than I ever though possible. I guess it should, because technically it is kinda a weird procedure

"Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. "

But yeah I will never forgot those treatments. After the first one, I felt like someone just beat me up but I told myself, it cant get any worse. I guess some people react poorly...i.e- me. Then I had the second treatment the next day, my doctors were trying hard to  get me in fast because my relapse was so bad. I remember that afternoon was a nightmare, that night I could barley get out of bed, I couldn't lift my fork. My doctors played with all the levels of stuff like calcium, potassium...ect in my body, but the next day I woke up in horrible shape. I could barely get out of bed. My doctors gave me like 4 days to recover from that, and then I started to get bad spasms... I was plagued by them for the longest time and really the whole ordeal was a mess. The plasma people didn't want to do anything cause they thought they were causing my spasms...but they were not, my body just felt like attacking itself a bit more. 

So yeah I had some rough days...fears of what was happening, what would happen next, the future is scary.  Unpredictability is scary. The future is scary. The bad part is that you have to learn to accept and deal with what life gives you. You can choose to live in some fairytale where happiness can be faked or you can choose to deal with anything that life throws at you.

I know that if I can deal with my whole hospital ordeal, I can definitely deal with anything life decides to throw at me. Gathering up strength from past experiences can definitely help you conquer things that you once thought were impossible. 

And that is enough blog for tonight...we are heading over to the breakfast soon but I will leave you with some song lyrics. The band is Bedouin Soundclash and the song is 12:59 Lullaby. 
 it's silent in the early morning the only sound is my breathing 
as i lay awake not knowing where it will be i'm going. 
but i know, time moves slow at 12:59, i sing lullaby 
and if you want me to sing you a song, i know that theres a 12:59 lullaby tonight. 

Sunday, April 26

(Hoy es domingo) (Today is Sunday)

So today was a boring Sunday, which was great, I needed it. Slept in a bit, did nothing all morning and headed to my roommates home town for her brothers Boy Scouts Spaghetti Dinner. It was fun, ate some good food and hung out with her family- all of whom are awesome. We then drove to her house and hung out there, messed around on the Wii and just relaxed. 

I realize that I go through periods of time lately where my emotions are very much like a rollercosters path. They go up and down and around and back again. I wake up in the morning and I experience one out of the following three emotions- thrilled - depressed - numb. Thrilled- like I woke up this morning, so excited for the day, ready and willing to conquer the world. Depressed- I wake up many mornings just with a uneagerness to start the day, its those days that I would rather not ever get out of bed...I guess if you are curious as to what it feels like, I can describe it as the feeling you get when you wake up and its raining and dark and gloomy outside- all you want to do is curl up in bed and watch a movie. Lastly- numb - these mornings I just wake up, no emotion...just get out of bed, put on sweats and head to class or stare at my computer. 

It is weird because this morning I was thrilled to get up, feel so alive. It is funny because on the ride back to school with Steph, she mentioned the fact that when I am so excited in the morning that it rubs off on her...I mean that is kinda positive energy can be passed on a bit to someone else...I guess it is kinda contagious. Though I worry that when I wake numb or depressed does that rub off on other people. I guess I would rather pass along the happiness rather than be a downer in someone else's day. 

I realize that I sometimes control my moods, I let things get me down and I try to remind myself how lucky I am that I am not in worse shape...things could always be worse kinda attitude. However I find myself responding to my own - things could be worse - mantra with something like - yeah but come on other people can find a cure. Yes, I know that is horrible but I do know that I am not the only person who considers that thought. Its not that I would rather take some other sickness for the chance to be cured but some days I just give up. 

Another point that my roommate brought up was the fact that when I have no plans for the day, or no classes, I tend to be the most miserable. Her and I were talking it over and I came up with the justification that when I don not have any plans, I have nothing to think about- or nothing to distract myself with- and that leaves my mind to wander- and not wander to the positives in my life, but it wanders to ever dark, negative thought that is someone in the spotted area that doctors call my brain. 

I think alot, probably more than I should but never-the-less I do and it often leads towards a negative place. However, sometimes, once in a great moon, I figure out something about myself that I didn't realize. It never dawned on me how upset I get when I go to sleep. I work myself up when I go to sleep...its bad because my roommate is asleep as soon as she hits the pillow and I lie awake for a good 1-2 hours after either staring at the ceiling, watching tv or listening to music, all awhile thoughts race through my head.

I hate unpredictability. The reason why I dont want to go to sleep is not because I am afraid of the upcoming day- I know I can deal with it all...but I worry that I will wake up and not have feeling throughout my body, wake up with no ability to talk, wake up unable to walk, wake up unable to _(fill in the blank)_ my worries are endless. The weird thing is that I am 20 and I feel like I worry more than my grandparents or my parents. I worry about my body failing me. That worry consumes my thoughts at night because unlike during the day when I can push it out and away, at night everything I pushed away resurfaces stronger and more intense. At night my day catches up with me and I tend to joke with people that I will most likely end up a insomniac or addicted to sleeping pills because when I sleep my mind is quieted. People just think I cant sleep because it is MS related. Its funny how people can blame everything on MS. The other day I was complaining that my hip hurt- I dislocated it once during my many years of soccer and it has yet to be fixed- I even put off my surgery to fix it last December because of the whole MS flare up- but as I was complaining to a suite mate she said, "oh it must be your MS." 

Maybe people don't know alot about MS, but I guess I can only blame so much on MS. I mean previous soccer injuries I will not blame on MS, but I will blame my poor coordination and balance on MS. There is a fine line of what I can blame and what I cant blame.

I was just in the laundry room with my roommate and I was walking around barefoot. Last year I would never, ever walk around barefoot anywhere.. I wouldn't even get off my bed without at least socks, but as I danced around the laundry room Steph said "I would never imagine you doing this..." I was too busy laughing but she in all seriousness said that my personality before everything happened would never allow me to a) dance in any public place or b) walk around barefoot...I guess things change- and I guess that I don't care about alot of things I used to be so concerned over. 

Well, this may be the longest blog, my fingers are tired and I have been typing for a while. Guess its time to end for a while...

Saturday, April 25

time for a new blog, I think, I guess

I am pretty sure that my body and I are having a fight. Ever since Wednesdays passing out episode I have felt strange...which makes me believe that me passing out was not from a lack of eating. I am also bruised...oh my gosh the bruises are nasty...I have nasty one the size of a fist on my derriere and my elbow looks horrendous from my IV. Anyways, I have gone plenty of times missing a meal...yeah yeah its not good, but it happens to the best of us...and that morning I had only been up for about 2 1/2 hours before I crashed. 

The reason I am wondering about this was because today I tagged along with Steph- my roommate- to church. So my brother had my car for the past day so we decided to walk to church...just over a mile into town, along sidewalks and the canal. Anyways, it was low eighties, which is kinda new for our area, we have been stuck in the chilly weather for a while now. I haven't gone to church in seriously like forever...I made my confirmation and was done...but Steph wanted company and I figured it couldn't be that bad. Well, it was all going fine but as we were all standing, I started to feel funny, I got really warm, and felt alittle sick and then I could feel my heart racing...I tried to take my pulse but I failed, mainly because I couldn't keep track of all the beats...I just stood there and tried to breathe and calm myself down...Now, I survived, but that is the second time I have felt like that in less than what a is kinda starting to freak me out...

Oh on the way to the dining hall this morning for brunch- see I so do eat-there were two caterers walking towards Steph and I- one was a woman and the other was a guy. Anyways, the woman was staring at me, like her eyes fixed on me...I got creeped out and kinda hid behind Steph, but the woman like made a straight V-line to me and was like, "OMG are you the one who fainted the other afternoon"
Me- "uhhhhh yeah..."
Crazy Lady- " I have been worried sick about you, I was at your side the entire time"
Me- " oh yeah, I dont remember you...I don't really remember alot..."
Crazy Lady - *reaches out and hugs me*
Me ( thinking)- "ohhhhh my god, help, help, help crazy woman..."

So yeah I don't remember too much from that day, and it sucks...

So whats the deal, is it stress, is it some weird reaction to the change in weather, is it my non changing so-so eating habits...who knows but I would really love to find out. I know my heart is fine... last November it got completely checked out because of the fact that in the ER I had a heart rate over I was given the all clear, but it still freaks me out that something could be wrong. Maybe it is me being paranoid, but really I would rather be paranoid then caught off guard.

Or maybe  its just me being so frustrated that I am not just a 20 year old...I have more to worry about than I need to...MS shouldn't be one of the first things on my mind when I wake up, or I shouldn't have to worry about recognizing all the strange warning signs my body shoots off. 

This may sound bad, but my mom obviously feels guilty me having MS, so I don't talk about it when I am around my parents much...but my mom has this new attitude that she is going to make up for giving it to me...whatever I ask of her, she does...she is stuck at my hip, she wants to go to countless concerts with me and then buy the tickets....she just wants to take care of it all, which is hard for me to accept. I like being on my own, I like buying my own stuff, I shouldn't need people handing me money... I love my grandparents to death but when I got out of the hospital in Nov, I got a envelope and card with 1000 dollars...

If countless concerts and money doesn't make me feel better, what will...oh maybe oh maybe some better health...being able to go more than a couple months without having to go in the ER...but hey, I do get to see Coldplay, The Fray and now John Legend in concert this still could always be worse...

Thursday, April 23

note to self- always eat breakfest or you'll wind up in the ER

OK so yesterday was a day from hell. I am glad I wished my amazing friend happy birthday at like midnight because in all honesty I was too overwhelmed to do it the next day. 

OK so, I woke up at like 9:30, got my stuff ready for class and decided I needed to attempt to make contact with my boss at the zoo. That's right, the zoo, where I am a birthday party supervisor and deal with snotty parents and wild children. Probably not the best fitting job now, but hey I need cash, the economy is in a recession and heck I kinda love my coworkers. So anyway, I called and talked to my boss only to be notified that I was "terminated" in November because she thought it sounded like I was not coming back from my MS flare up thing. Apparently my dad had talked to her, but he swears he never hinted at who knows, but I was kinda in the shock state of "ummmmmmmmmm I am what?" Luckily since it was a mis understanding I am getting my job back, I just have to fill out some paperwork and I am all set. 

Then I headed to accounting and entrepreneurship, where everything went fine. I did however forget to eat breakfast...I swear I was a bit strapped for time. I usually always eat at least a snack, but I was preoccupied. So after class I was off for some food, and I ended up at our schools Roost- which is like a place where you can get warps and chicken- it is like a tiny tiny little hole in the wall that gets to be like a 100 degrees when they are cooking. So I ordered chicken tenders and preceded to wait in line...5 minutes later, no food...10 minutes later, no food, 15 minutes'ish later still no food but by then I started feeling really weird, I had this insane pain in my side and I got really I decided to get a drink...well I walked the 5 feet to the drink container and everything got really dark, things kinda disappeared and it got super quiet.

The next thing I new I am on the ground with the campus safety trained EMT and a woman hold my head up...I was so out of it, I could barely talk, and I couldn't open my eyes...I was pouring sweat and just wanted to sleep. The woman who was holding my head was trying to keep my awake and all I really remember was that I kept saying no to every question she asked. Well the school called an ambulance because mr. oh so well trained EMT man said my pupils were fixed and dilated. Anyways the ambulance came like 5 minutes later and layed my down on the floor, took my vitals I think...and I remember the head EMT saying that she did not like the look of my color and compared it later to old water with rice...

So the lifted my to a stretcher and I was wheeled out on a stretcher though a busy busy eating area to the ambulance and taken to the ER. Once I was outside though I almost immediately came around and was joking with the EMT's on the way to the ER. One EMT was no happy with the schools EMT because asked me " Did you see a white light?" I immediately laughed and replied with a definite "No." Apparently the school EMT reported that I had no pulse and was basically dead...Obviously that did not happen...

Anyways, I spent 1-6:15 in the ER where I saw three doctors and had a 80 year old roommate with dementia. One of my suite mates- Hannah- came to hang with me. My "roommate" was so out of it she kept opening the curtain and talking to Hannah and I. This woman was looking for her shoes and was convinced that my shoes that were on my feet where hers...she even grabbed my foot and tried to take my shoe. Hannah also was felt up by the woman who complained that Hannah's pants were too tight. I felt bad but honestly I felt fine so having to deal with this woman got annoying really quick.

So anyways, in the ER my heart rate was high...and its always been high ever since I got diagnosed with MS...I have had multiple heart tests and everything has been fine. But none-the-less the first ER doctor was concerned so he ordered a EKG. Of course my EKG was I got to stay extra...then the second doctor finally actually listened to me and got me some food around 4 o'clock...really people all I needed was food. Then I had to wait and see a surprise there, he checked me over and did all his neuro testing, which I am sure I could do with my eyes closed by now because it seems like I have done them all on command about 1 million times. He told me I was fine, but told me to eat more...So they finally decided to discharge me, but then when the nurse checked my vitals one last time my heart rate was like 136 so she had to make sure the doctor still wanted to let me go...luckily he said I was good to go...

We finally got back at like 7, with a bag of McDonald's because by then I was absolutely starving. The worst part was that I never told my parents I was in the ER because I know my mom would flip and make me go I waited till after dinner to tell my mom didn't overreact too bad and my dad said he knew if I needed them to come I would have asked. It just seemed like a waste because I did feel fine afterwards...

Today I am just hanging out and I have tons to do tomorrow and unfortunately when I passed out yesterday I fell hard on my but or on something because I have a crazy big bruise...but oh well, better than hitting my head.

In othernews I am completly obsessed with Carrie Underwoods song- Just a Dream...its amazing and so sad, the first time I heard it I definetly cried and I never cry over a song...

Monday, April 20

oh benadryl i missed you...funny how easily you can fall back into the same old bad routines...

Saturday, April 18

what a time for a breakdown

great day...really nice, it was springfest, won 44 dollars in 20 seconds...but now I am working on homework...I am working the door at a mixer from 12-2 tonight which means I will see all the drunk people on campus dance horribly...but for some reason as I do my homework I am on the verge of tears. I dont know why but I hate when my friends tag my in facebook...I still have not accepted my new outter appearence...I still think of myself as the old me...then I see a picture and I see the new me, and well I dont see any imporivemnts, all I see is big cheeks and just everything has body refuses to shed steriod weight even though I eat healthy...and it is crazy how much one picture can make me so insecure...but it is like I see a picture of myself and I think, what I used to look like, then my thoughts head farther south to the level of I am gonna end up some crazy cat lady by the time I am 30...

A girl I know who is a senior, is engaged...I dont think that helps. You always want what other people have...I would love to be free of MS, I would love to at least have a guy around...I want something...I hate feeling like I drew the short stick in life. I can pretend to smile but inside its still a frown...I still miss the old me, and I still remember what the old me is...

This I guess, is me having a breakdown...

Maybe drunk stumbling people will distract me enough from crying till my head hits my pillow at 2am...

Wednesday, April 15

freaking out...

I have not posted in a while, mainly because I have been feeling a bit overwhelmed and rundown. I don't know if its that whole thing where your body is craving Tysabri and I am running on E...cause I am miserable, sluggish and just blah and have been for the past few days. 

On Monday I had my 65 minutes presentation for my methods of teaching business class, and it was to 7 grad students and my professor...lets just say it is intimidating to say the least. My presentation was on taxes...and yeah it was horrible, I don't know anything about taxes, nor do I do my yeah it was not so good...but whatever. Now I have a meeting tomorrow at 4 to meet one on one with my professor to put together my portfolio...he makes me so nervous and I always end up sounding like an idiot.

On Tuesday I met with my Consumer Behavior professor to discuss my awful grade on my last test. I am not on of those students who can go to a professor and complain about my grade or ask for more points. I took the test, I bombed the test, I take fully responsibility for my actions. Pretty simple in my mind. Well he waned to meet for some reason and was surprised when I didn't ask for any extra points. He also wanted to know what happened...and all I had to say was that I had had a bad day that day. Me+ the flu + stress = disaster. I had no intentions of talking about the fact that my MS was making me a bit funky but he looks at me and says, I know what you are going through, and I know you don't always feel great, but I am aware of whats going on. I sat a bit stunned, rather annoyed, rather frustrated...its one of those moments where you just bite your tongue and hope you don't start to cry. I hate the fact that someone just associates me with MS and blames my performance on it...I did bad because everyone has a bad day sometime. It is life, I wish people could stop "pretending" to know what is going on, admit they have no clue and just shove all their ideas about it back to a dark, dark place in their mind. Anyways, I have my consumer behavior final and my accounting final back to back, 1 at 8 and one at 10:40 so he switched his final for me to the next day. Apparently he knows what is best...I am the stressed student anyways...

Oh and then there is today. I woke up feeling good, better than I have woken up the past few days...but my roommate was not in a very good mood...and soon my mood just collapsed. Maybe I just thought if I was in a good mood, even if I pretended I could just make it through today. Well, seeing as though I am on the verge of tears writing this blog, my day could not have been any worse. First off, the amount of pain I am in is kinda crushing me at the moment. My legs burn and ache, my back hurts, my arms just feel like they weigh one million pounds and my head throbs. Second off, I feel so sluggish, I would be happy calling it a night and going to be and sleeping this awful feeling off. Third, all that has been on my mind is tomorrow.

I don't know why I am so worried about tomorrow, I have successfully gone through 3 Tysabri treatments. No allergic reactions yet, no problems, no new attacks. That's all good...but in my mind I can only think about what happened at my last neurologist appointment last Tuesday. My doctor had told me how there was someone that day who had had a bad allergic reaction to their Tysabri infusion. It was a few treatments in to his treatment and my doctor told me that I was definitely not out of the clear for any reactions. I am not going to lie, the fact that I could have a allergic reaction to this, scares the shit out of me. The fact that I could develop PML, makes me sick to my stomach. Its not really the kinda thing I should be worrying about now...but honestly when I get into the mindset of freaking out, it takes alot to talk me down off my cliff of fear. I am 20, I have already bypassed the lower level MS drugs...I just jumped right to this middle of the line treatment...according to my doctor, I am the third one he has just put on Tysabri without starting with something on a lower level...the other two were guys in their 30'2 or 40's or something...that there, scares me. 

I keep telling myself not to worry about it, just to focus on something else, but it's always there. Its stuck in my mind... and I cannot for the life of me shake it.

The only plus of today is that at 6:15...less than a hour, I am going out to dinner with my little MS group...all I can say is thank god...if I don't talk to someone who knows what I am going through I may explode at this point. They are the only ones where I can talk openly about it, I don't have to pretend to be all OK...they get it. 

For now, I will get ready, head over early, hit Wegmans and pick up some food...maybe a danish for breakfast, I know one of my amazing friends  has danishes for her comfort food...I may try that for breakfast tomorrow...and then I need some good fluids for tonight- to make sure I have veins, I don't wanna be stabbed by a needle more than once tomorrow and also I always end up with a nasty headache the day or two fluids always help...

Friday, April 10

Honey...I'm home...

So I came home Wednesday after classes. I was the lucky driver for my brother and his friend as well. Thank god its only a 90 mile'ish drive, I would have definitely wanted to kill them if it was any longer. 

I decided that I was going to get a new bike. I had researched for a few weeks now, all different models and everything and then yesterday my mom and I went shopping. She dragged me to this tiny bike shop where of course the bikes are the high end models...I test drove one, well I didn't want to but the owner made me...of course she picked out the bike that was almost impossible for me to get on and off of and I just wanted to yell at her and say " ughhhhhhhhhh my legs cant maneuver like that missy!" Of course I didn't, I just smiled, struggled and drove around and then decided I definitely didn't want that bike.

I had looked at Diamondback Bikes online, they have woman specific models and they were on of the few bikes that were well preforming and easy to get on and off of. I ended up with a hybrid 
model, the Vital 2. It is comfortable and easy to ride. However, when I got it home after the guy at the store assured me it was ready to ride, I took it for a test drive around the block and the chain almost immediately came off. That was kinda frustrating but things happen I guess. Anyways, my dad fixed it, and he spent this morning going through and tightening everything and putting on my speedometer and stuff like that. I am hoping to drag it to the park tomorrow and put some real miles in. I had a rough 70 minutes bike workout yesterday and my legs are so sore so I figured it was a good day to take off today. My mom and I are going to head out later and go helmet shopping...soo not excited, I better find a cool one, especially because I settled with a somewhat pink bike...

Tuesday, April 7

Neurologist Visit

So I just got back from my latest Neurologist appointment and really I guess I was dreading nothing because it wasn't that bad. The worst part was the wait, just sitting in the waiting room, staring at CNN and in a room full of people who are way worse off then me. Anyway I waited for about 30 minutes and I was brought back by a resident, who I had never met before, but she had heard alot about me. Apparently my doctor had been telling people all about me and he was really excited that I was coming in. 

I guess if I was in his shoes it would be have this girl you treat who cant talk or swallow and can hardly stand on her own, who is ridden with spasms and then you do the right things and the right treatments and then you see her a few months later and she is back to normal and doing well in school. 

Never-the-less, it is safe to say that he was really excited to see me. There was no changes in my MRI scans at all and I guess I will be having another one in July. He was very happy with the Tysabri treatments...

The bad thing is that the more you go to this Neurologist office the more used to it you get...and that really sucks because everybody knows you. Not that I am not just an awesome, amazing person  to get to know...because I totally am...but I would rather not know everyone by name...

Anyways, I am happy I survived...I even survived traffic home, so I couldn't be happier...

dreaded day...

i feel abit sick about today...yuck...

Monday, April 6

oh sleep, where art thou?

Couldnt sleep last night. I have a neuro appointment tomorrow. Not expecting too much sleep tonight either...

Sunday, April 5

I am gonna do this.

I am gonna do this. I am. I am determined to start riding again. Today was day three of getting back into it and tonight I spent 68 minutes on a bike to go 15miles. Gosh I am sore now, but I felt great when I got off it. I immediately felt like I really accomplished something and it just made me feel good about myself. I have been feeling really good lately and am really trying to block out all the negatives. It is the negatives that tear me apart.

Steph is not here tonight so its just me...and yeah stuff starts to eat away at me and then I get all ancy and sick feeling. I started to eat anything insight and it really is a awful downhill spiral. I called my house thinking that someone there could distract my mind for a while, but of course my parents were busy, its sorta really sucked.

I have a appointment with the neurologist on Tuesday who knows what the brain scans will show. Does it really matter? I wish I could tell myself it didnt, but I cant fool myself. I hate knowing that there are these leasions on it. UGH cant think about it, cant write about it or I will never sleep.

Oh, so this morning Steph and I may have gotten up super early to go geocaching. Of course it was raining, snowing, super cold and super windy but it was a blast. I would put some pictures up but I cant get them off my phone. So hopefully sometime soon there will be some pictures added!

Saturday, April 4

a bit of a break...

It's been  a few days since I have last posted, but for good reasons, I promise. I have been thinking alot and my perspectives on life have changed alot. 

If you do not know, Phil Keoghan aka host of the Amazing Race. He had a near dear experience when he was 19 and since then has lived life to the fullest. His motto, N.O.W- no opportunity wasted...he is the creator of the show also titled N.O.W and he even has a book titled that. He helps people set goals in order to live life to the fullest. He lately has become my role model. His outlook on life is amazing...and I cant say enough good stuff about him. He also is currently riding across the country on his bike...over a month, every day, riding his bike and he is doing so to raise awareness of M.S. 

Since Phil has started his ride, I have also started riding. 10-15 miles a day. I used to ride alot and then everything stopped. I missed it. I love hoping on a bike and just riding,  its awesome. Of course at school I am stuck in one place but I cant wait till I am home for Easter and go to the park with my bike and get some real miles in...I am super pumped.

So I decided I needed a goal though. I wanna do a Bike MS event. The events are 15,30,66,100 miles. 15 is a walk in the park, I rode 14 miles in a hour...soo I will do a farther one. I really want to do it though, I think I can...better yet I know I can.

A side note, I was in the gym the other morning and I was 45 minutes into my 1 hr bike workout...This woman walks in the gym, likely early 70's...she is hunched over and walks over to the pull down machine for arms, she could barely reach the bar and then when she did she decided to change it from a straight bar to a idk V bar I guess. So she is trying and trying and is unsuccessful, I am watching out of the corner of my eye just and her struggling was really bothering me. There were other people close by, but no one helped her out...So I had enough, I get off my bike and walk over and ask if she needed help. She was so grateful and it was just a good thing. When I was back on my bike I just couldn't help but think that if I didn't help her, there would be no one to help me when I need it...I guess I am trying to earn my pay-it-forward credits now. I feel like I would want someone to help me out because I realize that I, sometime, will need it and I just hope there is someone there, smiling and willing to help.