Saturday, July 31

Weekend Post

I promised a weekend post so I hope it's all you've dreamed of and of course much much more.

Last Sunday was my grandfathers wake. For some reason on Sunday I felt at peace with everything going on. I didn't expect to feel so at ease at the funeral home. Maybe it is because in the most serious situations I am always the one who deals with it by smiling or laughing. I can't help that I am a nervous laugher. I hope that no one got the wrong impression that I was not sad or upset but I was genuinely alright with everything happening. The more I thought about things after my grandfather passed I reassured myself that he knew the possible outcomes when he signed his name on the line agreeing to the initial surgery. While this was never the desired outcome, life followed its set course and this was the ending that was written for his story.

My dads mother died when he was 13. My dads father died when I was 3. I will be forever grateful for the almost 22 amazing years I spent with the only grandfather I've known. The memories will live on forever in my heart and in the smiling faces plastered across faces in years and years of photographs.

Last Tuesday I had my 6 month check up with my neurologist. He of course was amazed at how far I have come and how healthy and happy I am. If you would have told me a two years ago when I was diagnosed that in  a few years I would be able to accept all the cards I have been dealt I would have laughed and walked the other way. During my appointment I was a proactive patient asking all my questions and being very aware of everything that was being discussed. I asked to see my old MRIs so that I could compare them to my latest set. I asked about my labs and blood work and my options for the future. I have heard that at the two year point many doctors have been pulling patients off Tysabri and while my doctor admitted that for some of his less active MS patients he was doing the same he was very honest in his op onion of my particular case of MS. Since I had such a active case of MS he and I agreed that the risks of staying on Tysabri were worth it. I have more of a fear of the outcome of  being pulled off Tysabri because the overall conclusion is that I would not make it more than a few months before being hit hard with new lesions. Luckily for me I have been cleared for the next 6 months of Tysabri and that is very exciting news.

The day of my appointment I had the day off from work and was able to hit up three music stores out in Rochester. It is very evident that I have a music addiction. I am addicted to cds and luckily Rochester has three amazing stores that have a abundance of new and used cds. I have been buying used cd's for a long time now and aside from saving money and getting more for my buck I will admit that I like giving used cd's a home. I know - I am strange.

I met up with Steph and one of the Hannahs for dinner that night as well. Steph surprised me with my birthday present which was this gigantic basket fill with yoga stuff. I have been on a yoga kick for a while now and it just has this amazing affect of calming my nerves with the added benefit of strength, flexibility and better coordination. In addition to my latest yoga phase I started the whole eating healthy kick in January. I cut out a large portion of the junk I had been eating. I gave up soda for good along with overly processed foods. I am what people call a flexitarian. Once in a while I eat meat, sometimes I just can't help it. I eat so many more vegetables and fruits. I choose organic with some produce and foods. I thought I would hate having to be so  aware of what I ate but I find that I enjoy it so much more when I know the food I am putting in my body is actually good for me. The added benefits of feeling better and being able to finally drop the steroid weight that I had been convinced was permanently glued to my thighs, butt and stomach, has continued to motivate me to stick with this new lifestyle. So not only do I fit into my old jeans, I feel better, and I am conscious and aware of where my food comes from and I choose to eat and support farmers which makes me feel like a much better consumer.

Lastly did I mention I have a job? It's temporary for now. I work from 10am to 6pm. My hours are perfect for me, I get to sleep till 8 and go to work awake and alert. I guess I am doing a good job because when I started I was only going to be there for two weeks. Next week will be my third week. I was upgraded to my own office so someone must like me work ethics enough to keep me around a third week. Sure it is not my dream job but it utilizes my skills nicely and I confident in the products I am producing. Basically I am taking information from the research department and putting it into PowerPoint presentations that are given to the clients for their use. I will just proclaim myself the unofficial PowerPoint princess.

I think that was my update for now. My fingers are getting a bit too warm from my laptop and typing so I think it is a wise time to call it a night. I hope everyone is having a healthy, happy and enjoyable summer. I promise I will try to do better with updating my blog.

P.S... OK, so I know that weird comments come with the whole letting anyone comment on my blog, but lately my comments have been flooded with unidentified languages and just odd things. I got a few comments that were exactly the same so I hope I am not the only one getting the weirdness, because I personally prefer to share the weirdness equally.  For example, I received this comment on a couple of blog posts on the same day:

"Hello there, I am looking for MS patients all over the net. In few weeks something v ery big is coming for MS and Alzheimers disease. I have to let you know that I am not selling anything or a part of prayer group. It is a coincidence that I was informed about this. So please if you know anyone including yourself is suffering from these illnesses, help me spread the good news. All you have to do is follow me @
Or send messages through here.
I know this not very detailed information, but I am only allowed to say this much about the news.

I sincerely promise you I am no salesman, or trying to give empty hopes here.
I am simply messenger of good news, and best part about this for me that it is Blessing news.
This is nothing to be ignored, it will change lives. You got nothing to lose by following me.
Good luck, and contact me if you have any questions."

A part of me just wants to follow him/her and then just plague there twitter with comments, but the 22 year old, adult, working member or society says that is not the mature thing to do. I can't lie, I am very curious what the heck they are talking about. Personally I hope it is something to the effect that every MS patient gets a free pony, because I've always wanted a pony or at least that's what everyone wanted at some point in their life. Don't laugh, I know you've thought about having a pony too...

Wednesday, July 28

random stuff

I really want to post a huge post with updates about everything, from work, to wakes, 6 month neuro checkup and even yoga, but instead I am going to head to bed because I am absolutely exhausted. 

I will however say that today I made a very important life decision: When I have money to spend on randomness I will be buying myself a Edible Arraignment(you know the amazing fruit basket things preferably the ones dipped in chocolate) for my birthday every single year. I will of course eat the entire basket myself because I can and because they are just that good. I am apparently a sucker for chocolate dipped fruit on sticks. I just thought you'd like to know that. 

Anyways, I hope all is well in blogger world and I promise I will be back this weekend with a actual post chalked full of randomness and my own amazing insight on my very own scattered, random swarm of craziness that has engulfed my life. Goodnight xoxo.

Yup, I closed with a xoxo, I don't like kisses and I most certainly do not like hugs, its just another testament that I am way to tired to still be up.

Tuesday, July 20

Happy 22nd Birthday to me...

I am very much certain that I would like to redo my birthday. I talked with a few friends and have come to the conclusion that it my birthday has been postponed indefinitely. I started a job at a company downtown through the temp agency. I stare at PowerPoint all day and make corrections and revisions over and over again. It's only going to last 2-3 weeks and then I will return the role of "Dean" back to the man himself.

I was perfectly alright with working on my birthday. I figured when I came home I would scarf down dinner and then I would see all my family and we would eat pie and have a nice evening. When my dad picked me up at work I was notified that my grandfathers ventilator tube was disconnected and he is not expected to make it very long, maybe a day at the most. My dads family still came over and was all in birthday mode but it is hard to watch my mom going through this. Its rough. Really rough.

Friday, July 16

I debated posting tonight and have finally come to the conclusion that a post is in order. My grandfather is still in the ICU, still sedated and still on a ventilator. When I think about it or write about it, it doesn't seem real. Doctors are speculating that when he was transported from Boston to the nursing home in New York he suffered a heart attack. Apparently one of the main valves in his heart isn't working properly and there is fluid surrounding his heart.

I think at this point I'm just so numb to the idea that something could happen to him that I just can't wrap my mind around the situation. I talk to my dad and he is very upfront and clear of the possibilities and doesn't hold back information. The weird part is that I could talk all day about it and remain perfectly composed. My grandfather hasn't been around at all for the past (almost) two months now and I feel like nothing is changed. I'm used to seeing my grandfather every week for dinner. We've missed almost 8 of those dinners now and yet nothing feels different. Maybe this is me avoiding the whole situation, but it's strange to think I haven't even shed a tear. Of course I am worried that I won't get to say goodbye but in the same sentence I still remember the last night he was still himself. He was staying the night before his quadruple bypass and he couldn't figure out the remote to our TV in our basement (which is conveniently labeled as the in-law suite) to watch the Yankees. So I went hopping down the stairs and found his beloved Yankees, gave him a kiss on the cheek and wished him the best of luck. It's weird to think that could be the last memory.

I saw him once in the hospital after his bypass and he didn't look the same. My parents wanted me to go but I had no real desire to go. I am not a hospital person, I get dizzy and nauseous with all the smells, nosies and people. Hospitals and I do not get along. I went, I signed a pillow that heart patients get, and I left him to sleep, I didn't wake him up, maybe I should have so I could have at least said hello.

It's amazing how this blog that was once supposed to be all about me and my MS has changed so much. I used to think that MS was going to be in my every thought but it amazes me how much has changed in such a short time. I am thankful that through this process I have been able to share some of the thoughts swirling around in my head because I think we all need a outlet sometimes.

Hope all is well, hopefully soon I will get back to blogging the more happy, random things swirling around in my head and life, that are just dying to get out and onto this blog. <3

Thursday, July 15

My MS Health

Yesterday in the mail I received this packet of information for a new pilot study called My MS Health. "The new, web-based research program, My MS Health, uses surveys to capture your point of view about how your multiple sclerosis (MS) affects your daily life."

It appears this study is being sponsored by Biogen Idec Inc. and Elan Pharmaceuticals. I'm just curious out there who is going to participate in this? I can post more about it if anyone is curious...

oh and by the way you can check out the website here

Monday, July 12

Oh my gravy

So I have this nasty little swearing habit I picked up after I was done with student teaching last fall. All spring semester I was swearing like a sailor but I think it was because I withheld so many nasty words for three months that when I was done they just kinda exploded out of me. In May/June my grandmother spent 3 weeks with us and I had to give up swearing because well I didn't feel like being smacked or lectured every time I said a not so pretty word. Now that my grandmother is back I am trying very hard not to use any unpleasant terminology. My new favorite catchphrase is oh my gravy which is conveniently abbreviated into OMG, so now she won't flinch when I used the God word out-loud.

Oh and last night I had a date. Here's the highlights lowlights

- He smelled like my his soap or something but never do I ever want to feel like I'm on a date with my dad
- Have you ever been on a date who is the loudest one in the room? It's embarrassing,at least for me because well I'm quiet and I would do just about anything to not be the center of attention, especially when you're at the movies and your date is the only one laughing and commenting very loudly back at the screen like the cast can hear him.
- He wanted to sit in the seat at the theater that is like a double seat with no arm rest in the middle...I hate the thought of P.D.A, a.k.a public displays of affection. I may have lied a little and said I could not see the screen from that seat because the thought of having to sit that close with the possibility of p.d.a with someone that smelled like my dad made my stomach turn.

Oh and according to his Facebook status he definitely had a great night with someone special at the movies. At least I'm special :-) Anyways, as much as I can complain and sound like a complete jerk it was a stupid funny movie (Get Him To The Greek) and it was nice to at least be out for the night. There were no sparks flying - at least from my point of view that is - and I can say the next time out we will definitely be classified as "friends."

Now its back to resumes, cover letters and cleaning (I'm the maid today).

Saturday, July 10

It is going to be a long summer...

This was supposed to be a happy post because I totally met Greg Laswell the other night and I was going to talk all about it. The concert was super small, maybe 20 people were there and it was amazing. Something about his voice just gets to me...
Anyways, yesterday my grandfather got out of rehab in the morning. Last night my grandpa went to the ER and now he is back in the hospital. He is on a ventilator and is sedated. He has fluid around his heart and lungs. My grandma is back staying with us. It is going to be a very long summer...a very very long summer.

Thursday, July 8


Yesterday I had a job interview that was lined up  through my temp agency. I was asked what hours I was available to work before my resume was even sent in. I replied that I could work anytime between Monday - Friday 7am-11pm. So I went in for my interview, filled out the application and what not. This morning I get a call from the head hiring man who says "You didn't check that you were available to work on weekends or the third shift..."
Me: "I did not, I'm not available to work every weekend and I prefer not to work the night shift." (Realistically I can barely stay awake till 11pm let alone work all I have no interest in becoming some Ritalin addict)
Hiring man: "Well this position requires you to work weekends and nights."
Me: "Well, unfortunately I cant work them."
Hiring man: "I'll get back to you.."
I totally understand that I don't get first pick of jobs at this point in this economy but at some point I just refuse to do the shit jobs...hours that are between 11pm and 7am in the morning plus every weekend...At this point I just am tired of applications and hearing back nothing...seriously why is it so complicated to send a form letter that just says "we arent going to hire you, we threw away your application and resume as soon as we got it" I'd be happier with that then sending in resume after resume and never hearing a thing.

Tuesday, July 6

I haven't posted in a while because if I were you I wouldn't want to read about my life currently. Oh and the good news is that my grandfather is back in NY, in rehab and attempting to escape on a daily basis. I thought that when he got back things would go somewhat back to normal but that was a random assumption I assume because things could not be further from normal.

Job outlook - insanely grim. I can't even seem to get a job through a temp agency. I did get asked if I would be willing to work in a call center and while every bone in my body said NOOOOOOO I said yes because a) I bet it has air conditioning and b) I get paid and c) I get to get out of my house and stop playing the role of full time homemaker. Maybe my application will be selected and maybe I'll make some money.

Oh and the weather. It's insane outside. 96 degrees and humid. I went to the grocery store and wanted to curl up in the freezer section until I stopped feeling so nauseous. The heat makes me a angry person. So angry and nasty to be around I've heard rumblings of my family trying to ship me to Alaska. All they have to do is ask and I'm game...I bet somewhere up there its not 96 degrees at 9 in the morning.

Last week was my brothers birthday. My aunt and uncle surprised us with a visit and when I saw them ring the door bell I am not going to lie, I felt nothing less than sick to my stomach. You see my aunt and uncle are in the late 60's and they have very different ideals and thoughts that I do. My uncle thinks that a woman only needs her education because she needs a backup when her husband leaves her. (Oddly if you've seen the movie An Education he is exactly like the father in that movie.) They have the attitude that the men of the family should be put on some sort of pedestal because they are the heavy lifters, the do-it-all types while the woman stand in the background in aprons cooking food and doing chores. I wish I could say that was a joke...but it is so incredibly true. Well somehow after cake the conversation and spot light turned to me. My aunt asked "Stephanie, I know you can't work because of your illness so I was wondering what your plans were since you graduation." At that moment I was speechless and days later I still am. I have no comments about that...I guess it is what it is.

I am thankful that my friends and my parents and brother understand me and what I have been through and what I deal with on a daily basis. I wish that my other relatives could grasp some sort of understanding to my life and that they learn that I am fully capable of doing whatever it is I put my mind to.

My mom and I are going on a night out to Albany on Thursday to Cary Brothers and my personal favorite Greg Laswell perform. My mom bought me tickets for all the work I've been doing keeping the house and family running behind the scenes so that was a nice surprise. Well I suppose thats it...I'll be around reading through blogs now :)