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Chiari

The First Time I Met @SimplyLeap

It was about five years ago now. I had just returned from work after my surgery and I was meeting someone I didn't know at a coffee shop near the Verizon Center in DC. (This was one of those this I didn't tell my mom about, but she's probably reading this....) Outside of some strange connections online, we didn't have a ton in common at the time, except for one glaringly obvious similarity.

We both survived brain surgeries.

I remember meeting Lauree like it was yesterday. She had just started her hug tour and we were meeting up because I'd never met someone who had survived something similar to what I'd been going through.

I don't remember everything we spoke about, but earlier today, I had a flash back to something she said.

See, at this point, Lauree was at the 5 year post surgery mark and had stopped celebrating different milestones because they weren't as important anymore.

I realized, I'm nearly to that same milestone. I'm about to hit my five year mark and I nearly forgot. Lauree was right.

Even though we suffer through MRIs, never ending doctors appointments, and, for me, a sizable amount of medication to counteract the spinal cord damage, it's ok. I'm ok. I finally feel calm.

For that, I say thank you Lauree. I don't think I could have gotten to this point without you.

1% (Not that 1%)

99% of the time, I forget I have a brain issue. It affects what I do on a day-to-day basis like not lifting above a certain amount, being careful how I exercises and the whatnot, but these changes have become normal for me. I'm used to asking for help moving boxes or drums of 400 pounds of oil. (My husband hates oil drums, I love them!) Today, though, today is a different story. Today is that nasty 1% . I knew I needed to prepare for today last night. See, there is a giant snow storm hitting us right as this very moment. For most people, it's just an annoyance in the typical way snow reminds us that a majority of the people living in the DC area do not know how to drive in snow. For me, I am pretty much bedridden. And it stinks.

Last night I stayed up until 2am making soap and trying to cram two days worth of work into one. I've learned in the last 4 years how pressure changes, like the we are having right now, take me out of commission. It isn't your standard headache. It's not a migraine. It's almost like an altitude sickness, but at the house I've owned for more than a year. My face starts tingling and that is when I know it's time to start taking my meds and curl up on the couch with the puppies. I imagine what I go through during these changes is similar to what it is like to have a stroke. Funny story there, the first time it happened I was told I was having a stroke - they were seriously wrong.

I am not sharing this for you to feel sorry for me. I'm sharing it because when I first found out I had a Chiari Malformation, it was hard to find out things about what it means to have Chiari. I know a majority of the people who find my blog are doing so through Chiari searches. Plus, sometimes you just need to get the bad parts out there so you appreciate the good days more.

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!

Pt 2 - How To Survive Brain Surgery

Now that I am almost 3 years post-surgery I have a few updates to this post.

Keeping My Hair Short

I really want to say that I've been keeping my hair short because of the style and because I like it. Both are mostly true. But, a big part of me has kept it short because of being scared something else will happen. I think it is a way for me to be prepared & something that I can control. Three months ago, I made the decision to actually start growing my hair out again. It has been a process and now I constantly feel a little "shaggy" after nearly 3 years with 3 inch hair.

Ignore what anyone else says and grow your hair back when you are ready. It's just hair. If it makes you feel better keeping it short, do it! If you wish your hair was back to what it was prior, find a great stylist and talk about extensions. The goal is to do a little something that helps you recover. Only YOU will know what that is.

Invest In A Heating Pad

I still live by my heating pad. On the days the headaches are bad or my body just aches I reach for the heating pad before meds every time. We have an older version of this one & I love it! I really should keep one at my office for the days I have body pain but I haven't done that yet.

Get Your Eyes Checked

My Neurosurgeon & Neurologist didn't mention this to me but my mom who is a former nurse did. It's important to stay on top of your eye exams after surgery. Your field of vision can change and it is important to get this checked. I get my eyes checked more often now than I ever have. Without my vision I would have a lot of difficulty making soap!

Great Doctors

Finding a Doctor who is willing to listen takes a lot of time and effort on your part. Call, research, interview, and do whatever it takes until you find your match. I've gone through more doctors than I can count but I finally found a PCP that listens, emails with me, and will take her time to help me find the right specialists when I need them. To me, it is worth every extra penny that I spend. She is able to connect me to doctors that are like her and will help me stay at my peak.

I am lucky because we have great company-provided insurance. I know everyone is in different situations so find the best person that you can afford, is on your plan, and that you feel comfortable with. Sometimes that means driving for a bit ex: my PCP is in DC when we live 60 miles away.

Day 365

In 365 days I went from this:

The "we're getting discharged" look:

To this:

From sitting in a hospital bed a few days after brain surgery to finishing a half-marathon at Disney World, 342 days after brain surgery.

I'll take it.

This year has taught me a lot. I say "no" more often. I am learning how to balance my time & energy. I see things differently. I feel like I've pushed myself in a lot of different directions; trying to figure out what it is that I want. Most of the time people think I'm nuts, but it helps me recover. Pushing myself to run wasn't easy, my doctors really didn't like my plan to go from nothing to 13.1 miles - at all. My body was, and is, still recovering physically. But running helps me mentally - never in a million years did I think that I would ever say that. Running helps me face each day and stay positive. With some prodding and promises to listen to what my body was telling me, the doctors slowly, ever so slowly, gave their consent.

Most days I wish I could ignore my brain and forget the past year even happened; but big honker makes sure I remember him - usually at the most inconvenient times. I cherish the freedom of quiet days without symptoms, and I love the days that keep me in bed with my puppy by my side -  as happy as he can be. I'm still scared of what the future may bring. No one really knows what I should expect, unless you want to rely on the 1980's study that studied 7 whole people.

I've decided I'll think of the past 365 days as a little dip in the road with several exceptional peaks. From now on, 2011-2012 is going to be about: My mom's two week visit to DC, I got a new MacBook Pro (RIP DeskBook Pro), Started Old Town Suds, I finished a half-marathon and I got a REAL LIFE PUPPY. So thank you to the last 365 days for proving to be kinda awesome.

Day 342 - 13.1 Miles Later

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I did it! I ran the half marathon!

OK, it was a run/walk combo but I really don't care, it was 13.1 miles of pure torture.The day started with my alarm clock going off at 3am. Yes, 3 in the morning. Amy and I had to be on the resort buses to the race start before 4am to guarantee that we would be allowed to start. I don't think I have ever gotten up at 3am for anything before.

Once you arrive at the starting location, you start to realize how many people are running with you. At one point, the announcers said that 19,000 people were present at the race. This isn't a small race, no matter how you slice it. Amy & I were in Corral E (which was not the slowest). Once we got to the coral, we waited...and waited...and waited...and waited. By 6:30am, yes a full 3 hours and 3o minutes after getting up, we were off and running!

The first few miles seemed to go by fairly quickly. After the first mile, it was time for our first pit stop. In line for the relief, another Ariel said that I looked just like Gennifer Goodwin - which was kinda awesome. (I actually copied her hair cut.) By mile 5, my right foot started cramping. But, we were close to the castle. So close to the castle. With a quick stretch, we were back at to running.

While training, I would visualize running through the castle. It would keep me going & motivate me. In all actuality, I never pictured running through it with 19 thousand of my closest friends... It was a little cramped.

By mile 9, I just wanted the race to be over. I was starting to feel the pain & my foot was getting worse. But, we kept going. There was absolutely no way Amy was going to let me stop - which was a good thing. Around mile 9, we knew we were slowing down. We got a little too close to the pace balloons - behind them at one point. We heard from a team in training coach that if we make it to mile 10, we wouldn't be picked up by the bus. I've never wanted to die more after than run. We made it to mile 10 and I almost started to cry. After we passed that mile marker, I knew I was going to finish - bum foot and all.

Miles 11 and 12 took us back to Epcot and closer to the finish line. I thought we were going to finish the race going around the world showcase but we ran to a parking lot. Yes, we finished the 13.1 miles in a parking lot. By this point, the parks were open and there were a lot of bystanders. I understand why the race had to end in a parking lot - they wanted us to buy passes to get into the parks for the day - but it was kinda disappointing.

Being in true "Steff style", I tired to capture every moment. Between the tweets, videos and pictures, I think Amy got a little tired of my connectivity. But, this was the day I was looking forward. This was the day I checked one more item off of my bucket list. I know that if one day my Chiari puts me in a wheelchair that I ran 13.1 miles. Whatever happens, my brain can't take that away from me. I did it.

The video is extremely shaky. Hey, I was running across a finish line 13.1 miles from where I started, cut me some slack.

Day 342

Today, is the day I have been waiting for. It has been exactly 342  days since my upgrade. To say it has been an easy year would be complete and utter BS. Most of it has sucked, big time. There have been many days where walking wasn't possible. Days where the only think I could do after work was sleep. Days where I knew I had to cancel plans because I knew I wasn't going to be good company. I've hit my head, been hit IN the head, and pushed my body extremely hard this past, almost, year.

Today, I am doing something I never, ever dreamed of doing. I'm running a half-marathon.

Today, I am doing something I never, ever dreamed of doing. I'm running a half-marathon. At Disney World. The happiest place on Earth.

I'm not running by myself, my best friend, Amy, will be there every step of the 13.1 miles. With our many setbacks since we started training, our goal is to just finish. My mom, Joel's parents, Amy's Parents & her Aunt will all be there cheering us on. We've been doing odd things together since we met in our Freshman year gym class in high school, so our parents know what to expect. (Though, I think my mom is still scared that a car will get plastic wrapped or a pick flamingo will show up somewhere or that we will get the idea to move to Europe...again.) See, crazy things, that is who we are.

Hopefully, by the time this posts, we will be well on our way through the course around the different Disney parks.

Day 342 is the start of my celebration

I am just shy of my one year mark, and day 342 is the start of my celebration. I'll be posting regular updates to twitter so be sure to follow us on our journey there. I hope you will join me, my family and friends in our celebration!

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!

Diary of a Wimpy Big Kid: Acupuncture Edition

I hate needles. Hate them. I intentionally avoid getting shots. Every time I have to get blood work done for my doctors, someone else has to take me because I hyperventilate. If you are sticking me for an IV? I hope you have had your happy pill for the day because I will be your worst nightmare. So, I got the bright idea to try acupuncture. Yes, I volunteered to be stuck with needles - over my entire body. The great thing about my brain surgery is that it prevented my Chiari from worsening. The bad thing is that I am still in pain most days. Having the hard head that I do, I usually refuse to take pain medication - which doesn't lead to being a happy person. I began researching different ways to help calm the pain without medication and many, many people recommended acupuncture. My want to not take pills outweighed my fear of needles - I made my first appointment.

Four weeks ago, I went for my first session with Katie in the Del Ray neighborhood of Alexandria. She has studied with many successful Eastern medicine and acupuncture specialists, is younger than most of my doctors and, the best part, she has treated someone with Chiari. We had a little interview before any needles were brought into the room. After we both felt comfortable, I laid face down on a massage table (I never physically saw a needle in the 1.5 hours I was there which was fantastic). I was scared to death for the first needle. I thought it would feel like a shot but it actually just felt like a pin prick! It was fantastic! Some spots where she put needles did hurt slightly more than others and with one I had an immediate (positive) reaction. I have learned that there is a spot on the top of my head that causes my sinuses to immediately drain. The draining feature isn't the most pleasant experience, but for someone who wasn't 100% sure that acupuncture would work, it affirmed that there is something to this.

The true test of the experience happened the Friday and Saturday after my first appointment. Typically, when weather systems (especially cold fronts) move into the area I usually have an immense amount of pressure and pain. With snow in the forecast for DC on Saturday, I thought I would start to have troubles on Friday - but nothing happened. Saturday as the front was moving through - I just complained about seeing snow (I hate the bad 4 letter s word) and didn't mention pain. This was the first front that hasn't caused me pain issues in over a year! There is the chance that this could just be a fluke, but I want to remain positive. If I could have this type of positive experience after one treatment, what is going to happen after the second, third, fourth and so on?

My second appointment was two weeks ago and the week that followed wasn't as successful as the first. Katie told me not to expect such shining results each week. I was in pain but I think it was "nicer pain" than what I normally experience. My third session was a week ago and I am feeling rather pain-free! I've had one bad day, but I'll take 1 over 7. I do have a nice bruise on my hand from one point that was heavily stimulated with a needle; so far, that has been the only negative side effect. My fourth session was yesterday and was different though because I was face-up on the table. This was the first time I had the opportunity to actually see the needles while they were in me. I've never clinched my eyes more. I made one mistake though: I had an itch on my nose and went to scratch it - with the arm that had needles in it. My reaction wasn't as bad as I expected; I didn't faint!

I said in the beginning I would give acupuncture 4 weeks and I think I am hooked. Pain wise, the treatments are helping. I'll find out on Thursday if they are helping balance everything internally. I have my 9 month post-surgery scan then and I am hoping for positive results.

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.