>

Life

I Hate Snow

I hate snow. I hate it. Actually, hate isn't a strong enough word. The puppies can't get off the porch because the steps have turned into a snow slide - that now needs to be shoveled. It's cold and we're stuck at home. I do believe this is the definition of hell. I moved away from the Midwest's blizzards for a reason. Snow and I do not get along. Side note: Where exactly is Spring? The good news is our farmers' markets will be starting soon! I really can't wait to get out and see everyone again. (please remind me of this post when it is 95 out with 80% humidity)

As I sit by the fireplace with Lizzy curled up next to me, I think we need to move to Napa. The wine soap maker at the California vineyards :) That is doable, right?

One can dream. Until then, there is little bath champagne in my plans for this evening.

Stay warm and safe everyone!

How to Save the Lives of 600,000 Children Per Year

Myriam Sidibe is a warrior in the fight against childhood disease. Her weapon of choice? A bar of soap. For cost-effective prevention against sickness, it’s hard to beat soapy hand-washing, which cuts down risk of pneumonia, diarrhea, cholera and worse. Sidibe, a public-health expert, makes a smart case for public-private partnerships to promote clean hands — and local, sustainable entrepreneurship. - TED

525,600 Minutes (Times Three)

I can't believe it's been three years already. It also kinda feels like it was a lifetime ago. (If you aren't sure what I am talking about start here, here, here, here, and here. Oh, and here and here.) Today, I am celebrating my Brainiversary. That's at least what I've decided to call it. Joel gives me weird looks when I say it and, quite frankly, I don't care. So what am I doing today?

I'm filming my video interview/Q&A for Career Camp! It's kinda funny that I am talking to Michelle today. If we want to go back to the very beginning. The very moment I started to get concerned that something wasn't right, I was actually on a conference call with Michelle. I was participating in a continuation of one of her programs. Then, my legs started to tingle.

So I paced.

I didn't want to end the call, it was just my legs were annoying me and I didn't really know what to do. So I walked back and forth across our apartment while participating. I remember leaning on things. Pressing my forehead against the cold glass window while trying to stay apart of the conversation happening around me.

Three years and a titanium skull later, I'm finally letting my hair grow out and am mostly not fearful of something else happening. If you want to scare yourself you can read story after story of unsuccessful operations. But why?

Negativity breeds like rabbits. It is easy to go down that hole and never resurface. That can't be me. That won't be me. In my third year my goal is pretty simple: get back to running.

Running the half marathon less than a year after surgery was a tremendous feat. But I need to keep going. I need continue the tradition. I'm attempting to get back to running so I can really attempt to set a half marathon PR in late 2014 or early 2015. I've been looking at a few races, many of them just happen to be around my birthday!

Here is to a year filled with soap, spas and running shoes!

Downton Abbey - Male Viewership Up 100%

I <3 the Dowager Countess & the rest of Downton Abbey. Turns out:

PBS has released its ratings numbers for Season 2 of Downton Abbey and, to some mild and socially restrained surprise, viewership among the male 18-34 demographic, — the same demographic largely to blame for the Entourage phenomenon — jumped up 100 percent, matching the rise in viewership among 18-34-year-old women as well as 35-49-year-old men (the increase among 35-49-year-old women was almost twice as high at 173 percent). These numbers represent the largest ever increase for the "Masterpiece" series, with the 18-34-year-old women giving "Masterpiece" the largest (278 percent) bump over its previous average.

Dudes Love the Dowager Countess Just as Much as You Do

How To Survive Brain Surgery: All The Non-Medical Questions You Wanted To Ask

I've started noticing a lot of people are finding my blog through brain surgery & Chiari searches. This post for those people who are about to go through brain surgery and a reviews of products I found helpful as I recovered from my decompression surgery. If there is a question you have that I haven't answered about life before/after my surgery, ask it in the comments and I will try to answer it as best as I can. Please keep in mind that I am not a doctor (blood scares me) and my answers are based on my experience with surgery for Chiari - your experience will be different.

Do you have to shave your head for brain surgery?

It depends. For me, and my particular surgery, they shaved the back of my head. Before I knew I was going to have surgery, my hair was shoulder length, full-bodied (hello, frizz), and a curly mop. My surgeon told me, that if I left my hair how it was, the top layer would cover all the post-surgery dressings and the scar wouldn't be noticeable. Being who I am, I took this as an opportunity to chop about 12+ inches off. Post surgery, when I couldn't wash my hair on my own, my "let's go as short as possible" cutting spree paid off. It was SO much easier to care for the surgical area without having my life-of-its-own hair in the way. Several times my mother told me cutting my hair was the best thing I could have done.

Although my surgery didn't require me to cut my hair, I would highly recommend it. I cut my locks off the week before surgery so I would have sometime to figure out how to style it later. When people at worked asked what spurred the change, it was a way to transition into "oh, I'm having brain surgery next week" which isn't an easy thing to share with people. More on breaking the news to people later.

The Hospital- What do you pack for the stay?

I packed a hospital bag. It had everything I thought I could possibly need while in the hospital for 3 to 7 days. We never touched it. The only thing I needed was a set of clothes to put on for the worst car ride of my life (more on that below). Everything else, I asked the nurses for. At one point, I even asked for undergarments because I didn't want to get anything nasty on my personal belongings. Plus, I wasn't allowed to have any personal possessions, besides Bertie, with my while I was in the Neuro ICU.

Should I have anything special at home for after surgery?

Every person is different; each day I found I needed something different. The first day, it was a heating pad. The second, I needed ear plugs because I was extremely sensitive to sounds. By the third, I was just starting to feel like a person again and I wanted to start moving more. I would have pillowcases and towels you don't mind getting stained on hand. I don't think any explanation is needed there...

For that worst car ride that you will take you home, pack as many pillows as possible into the car. Something I have found useful, even this far post-surgery, are special Chiari pillows. One is meant to help you directly after surgery; aptly called the "Pain in the Neck". The other is for normal days. I use both pillows daily. The Pain in the Neck is great to have when you need additional support when sitting up; think of it as a giant well-made travel pillow. My mother purchased them for me in August and I recommend them to anyone who is having brain surgery. I take my "pain in the neck" pillow with me every time I fly. It annoys whomever is sitting next to me but I am comfortable and I don't worry about rough landings because I have extra padding. The reassurance is worth the price-tag.

What is a great get well package/gift I could send to someone who is having surgery?

I think this really depends on the person having surgery. Food is always helpful. Consider placing orders at local delivery places to have dinner delivered at a set time. Don't send anything to the hospital. It will probably get lost in the shuffle and there are lots of restrictions on what is allowed. Cards are great. Opening them gave me something to do when I couldn't just sit there and watch any more tv. If you are going to send a game, toy and/or something that requires any kind of movement; keep in mind that post-surgery movement is very limited. Standing up on my own was a huge accomplishment; so was walking to the front desk of our complex. If my mom hadn't been staying with us, someone to run errands or to sit with me while Joel went out, would have been extremely helpful. After my mom left and Joel went back to work, having someone around during the day would have been a great gift. I got rather bored being at home with limited mobility.

How Do you tell people you're having surgery?

I only had 3 weeks between finding out I needed surgery and upgrade day. I told my supervisors first and they already knew that surgery was a probable option. From there, I hunted down HR so I could file the proper paperwork under FMLA, disability and so on.

At this point, only my main family members and key coworkers knew and I hadn't put anything on twitter or facebook. I put together a list of people that I needed to tell before posting anything anywhere and started telling who I could in-person. The standard "I'm going to be out of the office for an extended period of time for medical reasons" led most people to assume that I was pregnant. Lesson learned there.

The main lesson I learned was tell people what you are comfortable with. You have different types of relationships and not all relationships require an explanation. With some people, I just wasn't comfortable explaining my absence - and they didn't need the details. With others, I was upfront and they saw the fear. The words I picked depended solely on my comfort level. I used my blog and twitter as a release for some details I had trouble verbalizing.

Can I see the scar?

I think my scar is kinda nifty, so I don't mind showing people. But please don't touch my head. The surgery removed the back portion of my skull and I am, now, extremely protective of that area. I let people who need to touch my head (e.g. hair stylist, doctors, acupuncturist) know, before they touch me, that the back of my head is going to feel different so they don't freak out.

2011 A Year to Remember - Or Not

I can't believe we are at the end of December. This year has been one of the longest and shortest years. It feels like just yesterday I was heading to Hopkins for the first time and, at the same time, it feels like a distant memory that I can hardly recall.

In case you missed it, this is what happened in 2011 on Glee

We rang in the New Year with Scarlet & Mr Darcy down at the lake. A few days later, Mom came to visit. During her visit, we found out that I wasn't dying! Well, one could argue that you are technically one step closer to dying everyday, but I digress. I met the awesome Dr W & we all know what happened there. (If you missed it, go here, here, here and here.)

Joel and I celebrated our 1st wedding anniversary at an inn near the University of Virginia. Then, Joel killed my MacBook Pro - which is now affectionately called the DeskBook Pro.

I got a PUPPY! OK, so Bertie isn't real, but he is really awesome. Sir Bertie went with me when my hardware was updated AND I got a replacement for the DeskBook Pro!

Amy & I decided to run a half-marathon. Granted, it isn't until late February 2012, but we all know I need as much training as possible if I am going to run/walk/crawl 13.1 miles.

I saw a lady go into labor at the Pentagon City Apple Store & the store cheered when she announced the middle name would be Apple!

Survived my first earthquake! (Hurricane and tropical storm too)

In August, I took my first flight post-surgery. Followed by 2nd, 3rd and 4th. I think now, I finally figured out what I need to do to make flights less painful post-surgery, which is a good thing.

Old Town Suds was born at the West End Farmers Market.

I made it to my birthday & 9 months post-surgery. At my 9 month check-up Dr W labeled my surgery a success!

Expanded my horizons with acupuncture (Seriously, if you have ever considered acupuncture go try it now.)

We moved to a condo! Also known as the day I beat Frogger.

Lastly, even though we will celebrate our two year anniversary in March, Christmas marks 4 years of two geeks trying to learn how to put up with each other.


Well, that was my 2011. The year that will forever be one to remember - or not remember depending on my mood. I hope 2012 brings everyone health and happiness!

If 5 Year Olds Can Make Espresso...

If only there was a VCR DVD player company smart enough to produce a video like this to show how easy it is to get that blinking 12:00 to go away. Now, that would also mean my grandparents would need to not return the computer they bought; but, we'll take one step at a time (and get them an iPad).

I've not looked into the brand, but this makes me want to ask for a full-blown espresso maker for our upcoming two year anniversary. When great espresso machines have the reputation of being super complicated, it is a great marketing video. Espresso - the one thing I like more than peanut butter.

Coulda, Shoulda, Woulda - Did

Many moons ago, pre-big brain, I put together a bucket list. It is a list of things that, for some reason or another, made its way into a blog post of things that I want to accomplish. After many months of not being sure of how much longer I would be alive, or even if I would be able to walk, I started to revisit this list to see what I can accomplish now. Some things I know I may never finish, for instance I have to demonstrate to the FAA that I am medically able to fly before I can even think about being a pilot in command again. (That will, one day, be an expensive process that may not turn out how I want it to.) But, there are things on here that I don't want to say I should have done this or I wish I would have done that - those things, I can do now.

Big Brains With 13.1 Mile Goals

A few years ago, Disney expanded its sports offerings to include themed races; one of those, is the Princess half-marathon. Amy, my Maid of Honor, and I have talked about running it for years. It is always been one of those things we should do. (I hate the word should. It is evil, but that is for another post.) The registration for the 2012 Princess race opened 4.5 months after my surgery and I was feeling really good. So, Amy and I decided to run it.

When we went to register for the half - the first time - I had a little scare that day with some new potential Chiari symptoms. We were going to potentially put the marathon on hold until the next year, but decided to see what Dr W said. A few days, and several MRIs later, we learned it really is all in my head and I have nothing to worry about. My surgeon gave me a great pep talk and told me that my scans look fantastic. There was a collective sigh of relief because we were worried about the dreaded "S" word conversation again.

Once surgery was out of the question, we were on cloud 9 and Amy and I started training for the half. We'll be running through all of the Disney World parks in February. All 13.1 miles of it. I'll have to battle Princesses, Prince Charming, and evil step-sisters to finish the race. And I will cross that finish line - I may be crawling; but darn it, I am going to finish.

What's Next?

Become a mini-Martha. Well, sorta - I've taken to my own interpretation of this. I still don't cook (unless you define cooking as ordering take-out or making espresso) and I don't really want to tackle anything in the kitchen at the moment. But, I started making everything in our apartment environmentally friendly. I now make cleaning supplies (sprays, laundry detergent, dishwasher soap, etc) so we aren't exposing ourselves to unnecessary chemicals. I already have enough malformations, I don't need anymore from things that are easily preventable. Since I really like the products I've created, I decided to set-up a little etsy shop and a farmers' market booth. I am going to count that as becoming a mini-Martha.

My Coulda, Woulda, Shoulda list is dwindling. There are things on this list, like meeting the Bo Obama, that I think some friends can help me with. ::nudge, nudge:: So, that is my next goal. With how much I obsess over dogs, how can I NOT meet the first dog? (Isn't Bo adorable in that photo!?!) I am hoping I get to meet Bo on our White House Tour next weekend with our Caen, France Sister City Delegation. Everyone keep your fingers crossed!

Another Year Older and 11cm Wiser

When my attorney and I started putting together paperwork, it was painful. I had planned to die this year. We talked through the whole process, what would happen to my accounts, who would be responsible for what and so on. There were documents drafted in case there was a miss-step in surgery and I was in a coma. At any age, it isn't fun. At 27, it seemed surreal. Somehow, while I was doing this, I was able to mostly hide my fears. I think only a few people really figured out how scared I really was. Plan for the worst; hope for the best. I'm a planner, that is what I do.

I really didn't think I would be here today; let alone able to do what I can do. This year has affected me in ways I just don't know how to describe. This year has flown by and I am extremely thankful that I am hear to see it everyday. 6 months ago, we were just trying to get past March 21st and now, with each day, we are just learning how to deal with the symptoms. But, I'm here. I'm alive and I can't ask for anything more than that.

I owe this past year to everyone who has helped Joel and I get through this - to the neurosurgery team at Hopkins for doing a great job and keeping me alive; to everyone who has put up with my crazy shenanigans post-surgery - thank you. I literally wouldn't be here without you.

What I Remember...

"Whatever you do, you have to get a Döner Kebab. Have to." "Is there a special store that sells them?"

"They're usually sold at a little stand or in shops all over town. You can't miss them. You're going to love being on base in Germany. It's such a great area. Oh, try the kebab with and without the special spicy sauce. I prefer it without."

"Steffanie, I need you to answer a few questions for me. What's your date of birth?"

"September 19th."

"Great. What are you here for today?"

I took a deep breath and, with what strength I had left in me, I whispered in a barely audible tone, "Brain Surgery."

My now favorite anesthesiologist turned away from my bed then and started messing with one of my three IVs. I refused to look at what he was doing. I feared another breakdown. I had already scared everyone enough with my sudden crying outbursts during surgery prep; it was the second time I ever saw my father cry. Thinking about food made me hungry so I just kept looking around the rather archaic operating room for my surgeon - a sign of comfort. The room did not look anything like what I had googled. The avocado green titles looked dingy and there wasn't any plastic that image search told me they put up for delicate surgeries. In the bluster of getting everything ready, different people, who never introduced themselves, kept entering and exiting the operating room. They would quietly tend to their duties without coming near me. I guess they were nurses? What exactly were they doing? Why were so many people here? Where was my surgeon? Why were you inputting things on a PC and not a Mac? My worry inducing thoughts were irrupted just before another panic attack set in.

"You're going to start to feel something, ok?"

"I'm starting to feel lightheaded...it feels good."

My main anesthesiologist came back into the OR; prepped for surgery with his scrubs, "Who's your friend?"

"Sir Bertie Toughington the III, my friend Allison gave him to me because my husband won't let me have a dog. Oh, try to find a bratwurst cart..."