Monday, October 28

MS in the workplace

I've hit some kind of a blogging rut it would seem. I have about 12 posts that are in some stage of the draft development but none of them are actually anywhere close to finished. It's funny I get in a roll and then all of a sudden the thoughts fade and I'm left with half a page of text.

Today, let's discuss a topic I've been debating lately. Do you tell your workplace about your disease, or in my case, about my MS. Sure there are laws that protect us in the workplace but a part of me wonder how easy it is for a company to work around these laws and still ultimately get their way and possibly get you out of the workplace.

When I started working at my current position around 3 years ago I decided that I simply would not disclose my MS. Of course every month I leave work for a half day so I can get to Tysabri but no one has every asked about this. Luckily my boss trusts that I will plan accordingly and he's never voiced any concern about his.

I'd like to think if I needed to at some point disclose my MS that things would go smoothly, but truth is you never know. I recently had diner with a old friend who has her own health problems and when she disclosed her condition to her employer she basically got boxed in to a dead end career path. Sure, nothing illegal happened, but it was clear that job growth was out of the question.

Every since I was diagnosed I have always fear that fact that if I wasn't working I wouldn't have insurance. No insurance means no Tysabri. My insurance this past year shelled out over $100,000 just this past year alone. Out of pocket that would be impossible. I used to worry what would happen if for some reason I lost my job and I didn't have insurance.

I've joked with Erik that we would have to get hitched just so I could be insured and honestly that's just so ridiculous that it would come to that. For all the flack that Obama Care has gotten, I have to say I am waving pom poms internally. Sure the process of enrollment is not all peachy at the moment but in the end I really think it's a good thing. I know a lot of people disagree and from all the conversations I always disagree with the person I'm talking to. If you are a perfectly healthy individual people seem to think this health care law is ridiculous, but to someone like me it opens up doors I didn't think would exist. Maybe it's not the perfect solution for the country but I believe it's a great first step to something great.

In the end it's one less what if that I have to worry about, and for that it's kinda amazing.

Wednesday, October 9

Life Stuff: A party and some other business

I kept joking with my mom that once race season was over for cycling every weekend would magically become free. Yeah, no, that is not the case. I've found myself saying over and over again that I can't believe how busy my weekends have been but I guess busy is better than sitting on the couch. Since we last talked I successfully threw my parents their 30th anniversary party. The only real issue was when my brother arrived with the food (his only job was picking up the cake and food the day of) and we were missing ALL the rolls and cornbread. People had started to arrive and as we unloaded food I noticed we were missing rolls which are pretty darn crucial when you have 15 pounds of pulled chicken and 15 pounds of pulled pork and no rolls to make sandwiches with! Our conversation went a little like this:

Me: Kev where are the rolls???
Kevin: They are in the bag.
Me: No, the silverware is in the bag. Where are the rolls? Wheres the cornbread?
Kevin: I told you, it's in the bag.
Me: I'm not a idiot, there are no rolls or cornbread in this bag!
Kevin: Check the other bag.
Me: There's only one bag!
Kevin: Oh shit.

Luckily after a call to the restaurant we were able to confirm that a bag with my name was left behind after the loader forgot to put it in the car. Thankfully Kevin has a friend who lives close to the restaurant and was able to deliver the missing food.

I am so happy that Erik was able to help me set up and get everything organized and basically keep me sane throughout the day. It's funny, you'd think with 50 people that I know I wouldn't be nervous but it turns out trying to make sure everything goes according to plan is beyond stressful. I don't know how people plan their own weddings...I'd lose my mind!

I also lucked out that my moms best friend Cindy and her husband, Gordon, were in attendance. Gordon also comes well equipped with uber fancy cameras and I didn't have to worry about getting any pictures that day. He snapped the picture of Erik and I below right as the party was starting and I think it's one of my favorites for the day!

Of course there were a few other hiccups along the way and I can say that as a 25 year old being lectured by relatives is one of the worst things, especially when there are a ton of  people around. I was raised to always respect everyone and give people the benefit of the doubt. My dad is the youngest in the family by 10 years and he has one brother and two sisters. When me and Kevin were growing up my Uncle (my dad's brother) used to take us on all sorts of adventures and to museums and I have great memories of these things. His wife, my aunt, retired 15 or so years ago and started in on these trips and such as well and likewise I have wonderful memories of days spent with them.

My aunt has always been a firm believer in women's rights and empowerment and having strong female presence in the world and obviously I can stand behind that. However, somewhere along the line my aunt and uncle started to lose perspective on this and they have strayed from what we call "normal." As I got older it was clear that I was held to far different standards as my brother and I used to think I was the only one who saw that. It become crystal clear to my parents that I was being held to different standards as soon as I went to college and again when I moved out on my own. My brother can do no wrong in their eyes. I, however, can do no right. It's beyond frustrating to have grown up visiting the Susan B Anthony museum when I was younger and hear countless stories about women activists and then be treated completely different from my brother. I'm glad that my parents have finally realized this as I've also watched them treat my mom differently as well.

The first words out of my aunts mouth after Erik and I happily said hello were that her and my uncle were very upset with me. I laughed a bit because I was caught so off guard that I didn't even know what to say because honestly I thought she was joking. When I first sent out the invitations I had instructed that if people needed directions they could call or email and I'd be happy to assist. My uncle had called and left a voice-mail asking about directions and my dad told me that he would call since he had to talk to my uncle anyways. My dad called, left a message with the instructions and never heard back. You see, they don't answer their phone ever, so you play phone tag for weeks. All that mattered was that they had directions so we figured they were all set.

Obviously, I was about to find out they were not. My aunt started lecturing me about the importance of returning phone calls and respecting people. I stated that my dad called and left directions and that I figured they were all set because my uncles message stated that he just wanted directions from me. Apparently, that was not good enough. As the lectured continued I looked at Erik and simply walked away mid sentence, and sure, maybe that was rude on my end but enough is enough. Heck, they made it to the party so really, isn't that the important part?

Later in the party I took a seat with my dads two sisters and a cousin and of course this same aunt came and sat down next to me. In the middle of talking with one of my aunt, my aunt next to me tells me I have chocolate on my face under my nose. Erik and I cut the cake so sure, maybe I have cake on my face but I'm sure Erik would have clued me into this fact. I rub, and wipe and yet she claims it's still there. It dawns on me that it's my scar from my bike crash. I joke that it's a scar from biking and she launches into a rant on how dangerous cycling is for women. You know, cause it's not dangerous for men...

Once again I simply got up and walked away. My parents joked a few days after the party that they have known my aunt and uncle so long that their behavior seems normal to them, but if they take a step back they seem so far out of the loop it's scary. We joke that they have no problem with Kevin moving out of state and riding his motorcycle almost everywhere but me pedaling my bike is far more of a danger. It's come to the point that my mom feels uncomfortable with how my aunt and uncle treat me and we avoid going to dinner with them. What used to be dinner every few months has turned into maybe once a year. I can't lie, it's hard to go to dinner with them and act like everything is peachy keen when it's so clear that they don't agree with anything I do. I can't blame my brother because he has no control in the situation but it's hard to sit there and watch them dote over him and then criticize everything I do.

When I was younger, just before I was graduating high school my uncle told me that women need to go to college and get a degree so that they have something to fall back on when/if their husband ever leaves them and that when I get married it's my job to stay at home while my husband provides for the family. My parents and I used to joke about how messed up this was but to this day I can't shake that he said it.

I try to remind myself that they are still family, but I'm not asking for much. I'd just like the same level as respect as my brother and really I shouldn't even have to request that.