Tuesday, November 2
Oh and listen to this Speak Now while your at it. Taylor Swift should run for president, I'd vote for her.
Speaking of voting, did anyone have issues with the new way of voting. In NY we have new electronic machines. You fill in the bubble and send them through the reader. My first two were rejected and then I was informed that I had one more try and that if I messed it up I would be unable to vote. Maybe it was the painkillers but I flipped my s**t on the woman about how I believe that her denying me the right to cast a ballot because I can not fill out the stupid bubbles and circles correctly goes against every law in the voting world. Heck, isn't it against the law to not allow me to vote. My left arm is wrapped tighter than a freaken mummy and so my arm is useless for the next week. My right hand I call my MS hand and it shakes more than leaves on trees in a hurricane sometimes. Today was one of those days where I didn't have perfect control of my hand so for her to make that comment took me over the edge. What she should have done was either help me fill out the ballot or find someone who would be able to assist me fill out the damn circles properly. In my book she gets a F- in voting 101.
Thursday, September 23
Monday, September 20
Friday, September 3
Today at Tysabri I mentioned my numbness to the nurse who of course called the PA because my doctor is on vacation. The PA came down and went over my options: 1) steroids today 2) MRI asap and then steroids or 3) wait and see but still get a spine MRI anyways.
I choose to skip the steroids and he was rather perplexed by my decision. He's new to the office and well he has never ever met me before. As my doctor says I am a special case. Steroids do nothing for me but cause the great side effects that we all love to hate. So my doctor never goes for steroids unless he has no other options. So I explained to him my reasoning and he agreed that steroids seemed like the wrong reaction for now. So they scheduled me for a MRI on Sunday. I was perfectly OK with next week or the week after...or never. I always find it weird when doctors are more concerned than the patient. So Sunday I will once again be stuffed in a MRI tube...at least I will get a good nap in.
My good news for this post is that I will be picking up my new car on Wednesday at 5! I am so excited!
Wednesday, September 1
$1,950 a year. I almost feel off my chair. Now my parents has prepared me for an increase and they kept saying "it can't be worse than the Mustang"...well its just you know 750 more than a new Mustang. You know its bad when the insurance agent who you met once says "Umm don''t sign the lease yet...I'm going to call around because you shouldn't be paying that ever."
To top off my day I went to write my FIRST check today to hold my car at Honda. I was so excited, my first check with my name on it and everything. I just set up my checking account and got checks last week in the mail. When I got the checks I made sure they were all in the box and stuffed them away. Today I go to fill out my first check and guess what...my last name was spelled totally wrong. There apparently was some miscommunication between my credit union and the check maker.
Oh and did I mention I mislabeled over 40 files today at work. Talk about wanting to bang my head against the desk.
Is it Friday yet?
Oh and once again I am exhausted so there was no spell check or editing...I apologize if that offends the perfectionists out there :)
Tuesday, August 31
Sunday, August 29
Friday, August 27
See and then kinda like that last sentence my brain jumps around like a thousand jumping beans are jumbling my thoughts and complete random things come out. I do think that despite my extreme nerves I did quite well and plus they only interviewed 5 candidates from a sea of interested people. So I should feel confident in that and if I don't get the job it was a learning experience...and oh I kind of just was hired today and a technology company doing geeky things for the next month/month and a half or so...so at least I will be entertained for a while.
Monday, August 16
1 : the conduct, aims, or qualities that characterize or mark a profession or a professional person
2 : the following of a profession (as athletics) for gain or livelihood
Tuesday, August 10
Monday, August 9
Today, unlike my amazing night yesterday, was not so amazing. Today MS kicked my behind. Today it seemed like my feet were round, I couldn't stay balanced or upright for anything. I managed to drop anything I got my hands on. I was looking forward t a nice yoga night but about 8 minutes into the routine my arms were shaking and I was tired. I ended up watching the rest of the 40+ minute routine while laying on my mat. Finally I think tonight I've set a record for the coldest shower I've ever taken and still managed to feel like my body was burning.
Tomorrow will be a long day and for the first time in a long time I'm nervous about Tysabri. Maybe it's because Steph will be M.I.A tomorrow or maybe I'm just over-thinking things but anyways I've mapped out a cupcake shop that I've been dying to try so hopefully that will be my added incentive to make it through Tysabri and a MRI tomorrow.
Saturday, August 7
As much as it sucks to have to go back to the job search it is kind of working out this week just because I have so much to get done. Monday is jammed pack with amazingness - Tysabri at 1 and a MRI at 6:45pm. I'm staying out in Rochester with one of the Hannah's apartment because I have no idea when I'll be out of the MRI and the route home is plagued with night time construction. This is going to be like my millionth MRI...OK so not my millionth but I've had more than my share. Just off my head I've had MRI's for the following:
-left knee (yeah each of those lead to knee surgeries...I have no idea why my parents let me play soccer for so long)
-right hip with contrast
-brain (before MS for a chiropractic visit gone horribly wrong. This was actually just about one year before I was diagnosed with MS, surprisingly my MRI was spotless)
-brain (this will be my one on Monday, MRI #16)
So I've had 16 of these and I'm 22. At what point do I set a record?
I am also house sitting next week. Oh and Thursday I am headed to the orthopedic. When I had my second MS attack I was scheduled for surgery on my hip. My IT band in pretty scarred up from being dislocated a few years back so I was slated to have it worked on and fixed up but that never happened. I kept putting it off after that and the less active I was the less it hurt. Now that I've been way more active with the gym and yoga my hip is killing me so I've decided there is no time like the present to go under the knife and get it squared away for good.
Oh and I almost forgot, my mom and I have tickets tomorrow to Maroon 5. We are in the 11th row or something insane and I am so excited. I'll admit that I am most certainly very much attracted to the main singer Adam Levine. He drives a motorcycle, he is throughly tattooed yup I think I'm in love.
Sunday, August 1
Me: "Well, my brother and I bought it together and share the expenses."
Aunt: "But you're a girl..."
Me: "Yes, yes I am...but the bike is a perfect starter for me."
Aunt: "But you have MS"
Saturday, July 31
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:
Wednesday, July 28
Tuesday, July 20
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 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
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 https://www.mymshealth.org/
Monday, July 12
Oh and last night I had a date. Here's the
- He smelled like my dad...like 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
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
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 night...plus 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
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 :)
Saturday, June 19
Today I had the bright idea to make quesadilla burgers. Super yummy. Anyways I made my list for the store, grabbed my purse, got all my shopping done, unloaded my cart at the checkout and opened up my wallet to grab my handy dandy wegmans card and my credit card and what do you know...no credit card...thats when the flashback to my credit card in my jacket pocket, sitting on a hanger at home started. Now you see, I own a shirt that says "I carry no cash" and that shirt could not be any closer to the truth because I never have cash unless I plan on going somewhere where I need it. So I scanned my groceries adding a quick 20ish dollar total and then checked my wallet to find a whooping 6 dollars and change. Sure I could have flirted with the not so happy cashier man and try to wink my way to a 6 dollar bill but that wouldn't have gotten me very far so instead I quickly packed up my groceries back in my cart and put in a mayday call to my brother who luckily answered his phone and came to save me with his wallet.
Now its back to work...my mission today is to reorganize out linen closet that strangely enough has very few linens in it.
Monday, June 14
Monday, June 7
So fingers crossed. Until then it's back to job hunting.
Tuesday, June 1
<---- Before....such lovely patches :)
Fixed green wall...ooh and my autographed Andrew McMahon (from one of my favorite bands Something Corporate + Jacks Mannequin).
My new improved college grad room...I even found my pretty sweet duvet cover from Ikea that I have been dying to use!
On May 21st my grandfather had a quadrupole bypass. He was supposed to be discharged in about a week after the surgery unfortunately he had a complication and is still in the hospital. He somehow has a leak that is draining a rather large amount of fluid from his chest tube. So until it stops draining, or the doctor figures out where the leak is he will be stuck there. In the mean time my grandmother has been staying with us and my dad and I have been driving her to the hospital. Along with finding a job my to-do list has skyrocketed out of control. I am the full time chef in the house, the chauffeur to and from the hospital twice a day, the gardener, the house cleaner and then everything in-between. I haven't even had time to get my motorcycle inspected yet and of course it expired the 31st.
This is actually the first bit of downtime that I have had and instead of blogging I should prob. be sending in more resumes but its a bit frustrating to apply to all these jobs and hear nothing.
So in MS news I am doing ok...the heat and humidity is certainly killer which has made me a bit difficult to be around. It has become pretty obvious when I over do it in the gym because I feel like complete and utter crap for the rest of the day.
Thursday, May 13
My tassel has gone M.I.A in this shot...I swear I did actually graduate.
My grandparents came to watch me graduate! My grandpa gave me super cute yellow roses, it was so cute.
Me and my parents...The first thing I said to my mom when I saw her was "hey, isn't that my shirt!"
My brother looks so happy to see me...poor guy had to sit through th 2 1/2 hour ceremony and everything...
Ok, so this picture isn't from graduation but when I first moved in my dad and I stood in front of the clock-tower and my mom snapped a picture before they left me for good. It only seemed wise to get a picture in the same spot four years later.
The only problem was that when the above one was taken it was like 85 degrees...the one on graduation day was taken with a 35 degree temperature and with a good 30-40 mile per hour winds. Needless to say I had to convince my dad to take off his jacket and we I danced around trying to keep warm as my brother tried to figure out the camera. Then of course we had to wait for the perfect moment to snap a picture without a huge gust of wind threatening to blow up my skirt (oh yeah believe me...that happened a few times that weekend)...
I've been home for a week and I am still unpacking. Luckily I get to head back to Rochester in the morning for some errands and to pick of my diploma. Then its off to the MS clinic for my monthly dose of Tysabri. Hopefully Steph and I will hit up the Lilac Festival Saturday before heading out to Jess's grad party Saturday night.
Saturday, May 8
Friday, May 7
<----- Picture from the Senior Banquet tonight
The picture is from the after party at one of our friends room...our night started with the guy who invited us over making a weird diluted kool-aid concoction which turned out to have way more alcohol in it than any of use realised...maybe that's why I look so happy in the picture.
Tomorrow we are pretty busy with the senior brunch with a special surprise, then graduation rehearsal, a senior send-off (not sure what that actually means, but there is food and our fridge is looking sketchy), oh and lastly there will also be senior bar night downtown. I never saw pictures from last nights bar night but it was pretty fun, kinda chill and quiet which was a nice change up. The place last night had a capacity limit of 90 1/2 (I'm curious who would make up the 1/2 of person though) and we totally were pouring out of that bar...
Well its 1:50am, so I suppose I am off to bed...
Monday, May 3
<---We posed as a train...yup, you guessed it, it was super early and we were in a very strange mood :)
Friday, April 30
Wednesday, April 28
Sunday, April 25
Wednesday, April 21
Tuesday, April 20
Friday, April 16
Monday, April 12
Sunday, April 11
Saturday, April 10
Tuesday, April 6
Monday, April 5
Friday, April 2
Tuesday, March 30
Monday, March 29
Saturday, March 27
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