Archive for June, 2012

and then I turned 30

I originally wrote this post over a month ago, but I figured since so many people were asking for the entire story behind my last post that I’d post it here:

Before I turned 30, I was incredibly nervous. I was going to be 30 but I wasn’t where I thought I would be. 30 felt really old and I still felt really young. I was worried.

For my 30th birthday, I copied my 13th birthday. For that birthday, my mother invited all her friends over and we talked about what it meant to be a woman. I remember feeling so loved and so empowered and that’s exactly how I wanted to feel on my 30th birthday. So I invited my closest friends and a bunch of my mother’s friends.  I asked everyone to be prepared to say a few words about what it meant to be a woman to them and/or their advice on how to live a good life. The party was awesome and exactly what I wanted. One of my most awesome and closest friends even flew in from Oregon. I rekindled some friendships that were dwindling. I got to spend time with some of the most important people in my life. I got awesome advice – mostly to live life on my terms, live without regret and to stop waiting for whatever I’m waiting to to start living.

I left my party feeling like my life was about to begin and that I was so blessed.

And then I turned 30.

It started simply enough: my left eye was acting funny. It didn’t hurt or anything, but it was funky to look through that one eye. Initially, I thought there was something in there. Consequently, I spent a lot of time in the bathroom playing with my eye trying to see what was going on. I took an L for the day and was crazy unproductive because reading was a total pain at this point. The next morning I woke up and my eyesight was a little worse. So I spent the morning trying to figure out who to go to since of course I don’t have a optamologist. So I finally get someone and they say I need a referral from school and so begins my day. I got to work (late) and explained to my boss that eye was being a total dick and that I’d prob need to leave early to get to a doctor. She was super cool about and so I spent the rest of the day trying to get appointments and referrals. This was when I learned exactly how much my school’s health insurance sucks. Anyway, fast forward to 4 pm when I find a doctor who actually takes my health insurance and she makes me take a million different eye tests. This is when I started getting scared. Three hours later, the doctors are whispering in a different language, they keep asking if my eye hurts and then tell me I need to get an MRI soon. As in within the next 48 hours. And said something was wrong with my optic nerve. Then they sent me on my way home.

Of course I went drinking instead.

Next day was spent trying to get the damn referrals I needed to get the MRI.

The day after that I met with the big daddy eye doctor who did a preliminary check and guessed that my eye was acting funky because of an old injury. I couldn’t really remember any serious injuries other than my boo dropping his stupid phone on my eye a month earlier but I felt relieved that this injury was starting to make sense. He sent me to get more tests and then to get the MRI and blood work.

Hours and hours later we’re both looking at my MRIs and I’m smiling to myself because I’m not seeing any tumors or anything I think is crazy. (Yes, I do think I can read MRIs because I watch a lot of Grey’s Anatomy.) There is a history of cancer on both sides of my family, so I was prepared for that to be the issue here. I’ve kind of been waiting on a cancer diagnosis for most of my life since I know those odds aren’t in my favor.

What I wasn’t prepared for was my doctor thinking that I have multiple sclerosis. I wasn’t even sure what it was until he started explaining. It’s an autoimmune disease where your body attacks the mylein sheaths that protect your nerves. So that was what was happening with my eye. He said he thought it was just a regular optic neuritis until he saw two small legions on my brain. Yup. Then the rest kind of fades to black. I remember bits and pieces “50/50,” “I know this is hard because you came in here thinking you’re healthy” “home nurse” “iv” “steroids” “another specialist” “bring someone with you to our next appointment” and “come back in two weeks.”

In a daze, I left the office. I called my mom. I cried the entire subway ride home. I drank two vanilla cokes since they told me not to drink alcohol because of the steroids. My friends came over. It was insanely awkward and sad. My mom came. It lightened up a little. The drugs came. It got scary again. The nurse came, it got scarier. The catheter went it, it got gross. Chris came and I smiled. The nurse left, and then Chris left and then it was just me and my mom.

And for the next four days, it was me and my mom and my catheter. I only went out once during those 4 days and randomly ran into friends. The catheter, while wrapped up, freaked them out. I went back home and stayed in the house. The catheter came out. There was blood everywhere. I worried if this was going to become a regular occurrence in my life. This can’t be my life.

This week I see a MS specialist and get his opinion on my MRIs. I also go back to my first doctor to get the results of my blood work.  I’m scared.  This week I find out if I have a slightly annoying autoimmune malfunction where my eye is gonna get cute every now and then or if I have a chronic disease that might lower my life expectancy to just 30 years. [spoiler: it was MS, and that life expectancy estimation is off (too low) according to newer books I'm reading. phew.]

There’s nothing like a situation like this to kick your ass hard enough that it forces you actually live. Before I turned 30, my biggest goal was to pay off my loans within the next 30 years. After I turned 30, my biggest goal is to live the most incredible life I can within the next 30 years. Let’s see what kind of shenanigans I can get myself into now.

e.

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write your heart out, part 1

My friend started a new blog, so I checked it out.  Immediately I was struck by how raw and open she was.  People often don’t put themselves all the way out there, mainly because it’s hard and it’s risky, but she did and I was so inspired that I just wanted to write and write.  And so I did write, on my secret blog and my 750 words.  My secret blog was created because I wanted a space to write about my shenanigans that wouldn’t impact me professionally, it’s where my fun writing happens.  But due to recent health issues, it’s turned more into a place where I am trying to process my diagnosis and changes that I need to make to stay healthy.  I’ve been dabbling about whether to write about it here or not.  The books say not to because it could impact whether someone hires you or not, and that’s a valid point, but seeing as how both of my bosses know what’s going on, (and because I never listen to anyone), I’m gonna talk about it here. (sorry mom)

About a month ago, I was diagnosed with MS.  It was a surprise, and according to my friends, I took it like a champ. In the beginning I read a lot of books on it but they scared me, badly.   So I stopped and read Hunger Games over and over again.   After I got over the initial shock, to be honest I’m still doing that, I decided to look at MS as the kick in the butt that I desperately need to actually (finally) start living my life.  I mean, at my 30th birthday tea party, most of the advice I got was to let go and live.  Stop waiting for whatever it is that I’m always waiting for and just live my life.  So I’m trying.

If anything, I think my diagnosis has inspired my mother to live better.  We took a vacation, something neither of us has done in years.  We have more plans to travel.  She’s gone to a trainer and is trying to eat better.  It’s like  my health issues are the kick in the butt she needed to finally start taking care of her health. It’s a pleasant surprise.

There’s so much I’ve wanted to say, like how Sharon Obsborne’s over emotional reaction to her son being diagnosed with MS doesn’t help and actually scares me, like how my own mother has turned into super mom and while I appreciate and am thankful for her love and attention it stresses me out and drives me crazy, like how I’m thankful that my brother doesn’t really get what’s happening because I don’t look or feel sick, like how it’s hard to care about other people’s problems because everything seems petty and stupid to me now, how having a disease that’s mainly controlled by how well you hand stress is perhaps that worst thing that I could have and I can’t identify with the word “disabled”.   And so much I didn’t want to say, like how I hate waking up every morning because something might not be working or be randomly hurting (like it did last week), how I don’t really want to meet anyone else with this or hear about their stories, or how the combination of a breakup with this diagnosis makes me feel totally broken sometimes.

It’s weird because this is something that I don’t want to define me but it’s taken over my life.  I have to now plan my weeks around this medication that may or may not make me sick for an entire day.  It’s made me incredibly aware of my body and how my emotions reflect themselves physically – I’m more aware of how tense my shoulders get when I’m a little stressed and if I get very stressed my left eye gets blurry.

I also wanted to write this because I wanted to publicly thank my friends for being so amazing through all this.  Whenever I need an ear, a dinner date or a drinking buddy they have been there.  When I had to have a catheter and steroids through iv, they were there.  When I pinched my nerve, they were there.  When I was diagnosed, they were there.  When I had meltdowns or fright attacks about the future, they patiently listened.  On one of the message boards, someone said MS shows you who your real friends are, and they weren’t lying.  Thankfully, I already knew who they were and now I just love them even more, if that’s even possible.

This is supposed to be my space and it felt wrong to not be able to use it as I want to.  So, that’s what I’m doing.  part 2 is on the secret blog. 

peace,
e.


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