A Decade in the Making

Pull up a chair, grab your favorite beverage, and settle in…I’ll admit this may get touchy-feely.

This blog was started back in the summer of 2009 when I was first diagnosed with a chiari malformation as a way to keep everyone in the loop. It detailed our journey through neurosurgery consults, posterior fossa decompression (i.e. brain surgery), and my recovery. In a way, it was also a journal for me.

I think about what I’ve been through and the journey I’ve traveled year-round but when the end of September stares at me from the calendar, it occupies more and more of my thoughts. I start to get introspective, reflective, quiet.

I’ve been mulling this post around in my head for days. Trying to put into words the jumble of thoughts and feelings. Trying to sort it all out and find a way to adequately sum it up.  This year it’s weighed on me differently than in years past, and until a couple of hours ago, I wasn’t sure why it was different.

Ten years ago today I had brain surgery.

 

TEN. YEARS. AGO. TODAY. I. HAD. BRAIN. SURGERY.

 

It’s been 3562 days since I checked into the hospital that morning, a white-knuckle headache accompanied by vomiting and nausea reaffirming why I had chosen to gamble on a procedure that wasn’t guaranteed to help. A procedure that I hoped would provide me even a sliver of relief from the headaches, the blackouts, the depression.

I spent some time skimming through old posts this morning as I sat and sipped a cup of coffee. Reading the posts by Cris or Jess before I felt up to reconnecting with everyone myself.

The details surrounding the day of surgery, the night in ICU, and the next week or so are fuzzy now. The harsh edges have faded, softened, blurred. Perhaps by time; perhaps as a way for me to move past such a paramount event in my life.

There was much more that surrounded my brain surgery than many people are aware of. Beyond the physical pain triggered by the chiari symptoms, and the trauma of surgery and recovery, there’s an emotional toll I spent years carrying around.

The depression I was shrouded in damaged friendships. Some beyond repair as I withdrew and pushed people away.

My stubbornness and tendency to be fiercely independent meant I didn’t ask for the support I needed from some people, (unfairly) triggering resentment when my needs were left unmet.

When I did ask for help, I harbored disappointment and anger because of unmet expectations.

Previously, every year when October 2nd rolled around, I’d sit and think about how grateful I was for a surgery that gave me a second chance at life. A surgery that resolved many of my symptoms, greatly bettering my quality of life.

I’d put up the stereotypical post on Facebook. Gushing about gratitude and how I couldn’t believe another year had passed. Shouting that I was a brain surgery survivor. Thanking family, friends, and neighbors for their physical and emotional support through what was perhaps the darkest, most challenging time of my life.

But I didn’t talk about how the anniversary triggered me in a way I wasn’t even fully aware of. It opened up the emotional wounds; reigniting the depression, the resentment, the disappointment and anger.

I recently “graduated” from 18-months of counseling that kicked my ass and made me realize many things (including a solid PTSD diagnosis from my brain surgery).

I realized I was unable to unload emotional baggage I’d been carrying around since I was a teenager.

I realized my inability to process and let go of the anger and resentment was affecting my life and relationships.

I realized I had to unpack all the baggage I’d been carrying. From my parents’ divorce to my infertility struggles, to brain surgery, and everything up following it. I had to take responsibility for my feelings and move on.

To say the least, this has been one hell of a decade. I’ve gone from being a married mom of a toddler to a single mom of three kids. It has without a doubt been the toughest 10 years of my life. With everything that had happened, there was a lot of anger and resentment to let go of.

And let me tell you, pulling all that junk out and sifting through it wasn’t easy but I put in the hard work.

I unpacked the baggage and started on a journey to become the Amanda I want to be. Someone who I’m proud of, not necessarily because I did things the “correct” way but that I did them in a way that was right for me. An Amanda who doesn’t hold onto what has happened in the past, gripping the anger in my fist like a hot coal, hurting only myself.

Looking back ten years, is this where I thought I’d be today? No, not at all.

Looking back a year, is this where I want to be today? Yes, mostly.

I am and will continue to be, a work in progress. But on this milestone anniversary, I realized I’m finally at peace.

 

 

 

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2nd Opinion

Upon the suggestion of a couple of friends (and based upon the recommendation of some others), I scheduled an appointment with another Ears/Nose/Throat doctor here in town to get another opinion. 

His believes without a doubt, I will see relief from headaches (he can’t guarantee 100%) by opting to go ahead and have surgery.  Not only are there numerous cysts in one sinus cavity, I also have a “horribly” deviated septum and what appears to be chronic sinusitis in the cavity opposite the cysts.  He said that it wasn’t any wonder why I was having headaches in response to weather changes.

This appointment made me question whether the first doctor even looked at the MRI images or just read the radiology report as it never mentioned anything other than a single cyst.

Right now, I’m set for surgery on September 16th.   I’m beginning to feel like I should apply for a frequent flyer discount.  😉

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New Year, New Baby

Another beautiful baby girl joined our family just after midnight on January 1st, making her the official New Year’s baby for the area.

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Comparing

In the last couple of weeks I’ve continuously found myself comparing “today” (i.e. whatever day it was) to a year ago.  I’m not sure if it’s a good thing to do or not because the situations are so completely different but it’s a habit I just can’t break.

It amazes me how far I’ve come in a year.  A year ago we were delicately navigating our way through recovery — facing encounters such as H1N1 — and watching my progress day to day for signs of improvement.  Today we are hurdling towards the arrival of a new baby and the start of yet another new chapter in our lives.

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Celebrating Success

A few months into what we considered to be a wonderfully successful recovery, we made a decision to take the leap and expand.  😉

Baby #2 is expected January 11, 2011.

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An Anniversary of Sorts

On July 20, 2009 I went to my NP to get the results from my MRI.  As I drove across town I had fears and anxiety about what I’d hear.  With the symptoms I was presenting his concern, although unlikely in his opinion, was multiple sclerosis.  Since I have familial history it wasn’t a complete shot in the dark.

There was no way I was prepared for what I heard.  It was that appointment where he told me about the chiari malformation.  He also said that he knew very little about what it was, what it meant and what the prognosis was.  All he knew is that someone who got “paid more money”, i.e. a neurosurgeon, needed to talk to me about it.

After leaving the office that day, I sat in the parking lot stunned before starting my vehicle.  I had been preparing myself for something I was familiar with.  Not something that I’d never heard of.  Worse yet, not something that my doctor couldn’t even tell me much about.

When I looked at the calendar yesterday, I could hardly believe it has been a year since that appointment.  What an amazing year it has been!

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A Measure of Success

Some days, I think it’s hard for me to be grateful about how successful the surgery was. Don’t get me wrong. I am beyond thankful but in my day to day life I forget how far I’ve come in almost 5 months.

Certain instances are what bring everything to light and remind me how lucky I am.  Instances like this:

I made this dress yesterday for Kate.  Six months ago there’s no way I could have sat at the sewing machine to even attempt such a project.  I would have felt horrible during, immediately after and probably the following day as well.  Yesterday I felt perfectly fine as I worked; I felt perfectly fine after I finished the project; this morning I woke up feeling normal.

To me, that’s a huge example of how amazing my recovery has been and the epitome of why I wanted to go ahead with the surgery.  It feels fantastic to be able to do the things I love.

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Getting Back to Life

When the headaches, insomnia and depression hit hard early this summer, I turned inward.  I shut out friends, family and even my husband.

I quit making phone calls just to chat and/or check in with people.

I quit making plans with friends.

I let the physical and emotional pain darken my days and rule my world.

Weeks of therapy and anti-depressants helped me get to a point where I could open myself up, if only a little.  The chiari diagnosis forced me to open myself up a little more as people reached out to offer support and ask questions.

As surgery came and faded into the past, I took a step backward.  I found myself closing up again.  Our mandated quarantine shut me off from seeing friends.  I made far few phone calls than I should have.  I used my low energy as a crutch.

I work now on transitioning from “patient to Amanda” (as my therapist says).  It means repairing the relationships I so horribly neglected and navigating through life again.  It means not shutting doors and letting myself use my life as an excuse.

It means living my life.

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Life in Pictures

Kate and I, the night before heading to Salt Lake City.

Post surgery in the Neuro Critical Care Unit.  I think people weren’t prepared for the Medusa inspired hairstyle.

My beautiful Princess comes to visit.

Not a bad view out the hospital window.

The best part of the hospital was the 24-hr Starbucks on the main level.

Ditching the wheels for a stroll around the floor.

Wednesday, October 7th — 5 days post surgery

My arms took a beating from IV’s, blood draws, etc.

The view of the Valley off the back deck of the condo.

Being silly, obviously.

Terrorizing shoppers at Smith’s.

Monday, October 12th — 10 days post surgery.

Dakota enjoying my increased need for rest.

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Home At Last…Update From Cris.

Sorry, this came in after I had shut it down for the night. Cheers! Jess

Sorry to everyone for the delay in updates regarding Amanda’s progress. The last few days have been busier than expected, especially occupying many of the waking hours of a very active toddler. After the last email update that was sent, you all were aware that Amanda had been discharged from the hospital and we were spending the remainder of our stay in Salt Lake City letting her rest and recuperate at the condo we had rented. While most of those days were good for her and she was getting stronger, there were bouts of fatigue, stiffness, and soreness, which could only be expected. Yesterday, we were a bit surprised that Amanda had unexpectedly felt sick/nauseaus again after a number of days of that being absent. Since we were planning on leaving town the following morning, we decided to head back to the hospital to consult with the doctor and nurses, just to be safe. Luckily, our fears were put at ease that everything with her incision, etc. seemed to be absolutely fine and that the sickness was often a common after effect post-surgery. As I have mentioned in past emails, the docs have told us that this is related to the change in cranial pressure due to the surgery. Before, she had a very high pressure inside her skull due to the Chiari malformation squeezing on her brain. Now that the pressure has been relieved, some screwy things can and do happen as the brain tries to make the adjustment. They prescribed some familiar meds, to handle the sickness, and also added some additional meds to help with inflammation.

This morning we packed up the condo, checked out, and had some breakfast on the way out of town with close friends. With one brief pitstop at the airport to drop off Amanda’s sister (returning home to Michigan), we hit the road for Idaho Falls. We arrived home in the late afternoon, but with time to spare to allow Kate an opportunity to romp around he house and yard with one of her very favorite playmates from around the corner. Amanda has been resting comfortably most of the time since we’ve been home. Things seems to be going well and we hope this will only continue each and every day to come. It’s been a long trip and it seems like forever ago that we packed up and began this odyssey only last Thursday. A lot has happened since then but I can honestly say that we feel this is a new beginning on life for Amanda. For a brain surgery patient, her recovery and progress has been nothing short of remarkable and we feel that it is in large part to the abundant support for you all. Thank you again for everything…

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