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.


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!


I’m opening an online store on Etsy.

Right now I’m shooting for an opening date of May 15th.  This could be pushed back to June 1st depending on how much stuff I get sewn in the next couple of weeks.  (When I thought about doing this I neglected to remember the launch would coincide with getting my garden planted, spring yard work, getting the trailer open for the summer camping season, etc. After a couple of days of internal struggle I decided to start anyways while the ideas were still fresh.)

I’m excited, nervous and excited.  Very excited.  And nervous.
I love being able to sew again.  I love seeing pieces come together.  I love seeing the recipient’s reaction.  But it terrifies me as well that they won’t like what I made, that they will only see the imperfections.
If I take this leap it turns out disastrously, at least I’ll have gifts for all my favorite little girls on hand.

6 Months

Today marks the 6-month anniversary of my decompression surgery.  Six months!

Before surgery I hoped that at this point I’d be finding myself getting back to the person I knew before.  I was being optimistic that 6 months of recovery would put me in a good place.  I’d never in my wildest dreams expected to be where I am today.

I’ve come so much further than I ever hoped to.  Well, I hoped to come this far, but was trying to be realistic in my wishes.  I wanted to be able to function again.  I wanted to be able to enjoy my life and family again.

Unfortunately, I can’t say anymore that I’ve been 100% headache free but the couple that I have had were easily treatable and weather-related.  It appears as though my newly decompressed brain likes it’s space and doesn’t appreciate weird weather patterns that cause fluctuations in barometric pressure (all of the headaches coincide with a drastic change in weather, usually storms).  On a whim, we tried a medication dosage that I used to take in High School and it’s done wonders at getting rid of the pain quickly.  And cheaply — $5 for 9 pills, compared to the hefty price tag of $57 for 9 pills of the previous medicine.

So even though I’m not completely headache free, this is a hell of a lot better than I was 6 months and 1 day ago.    I will take it, no questions asked.

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.

It’s hard to believe such a short time ago I felt as badly as I did.  I think back to the days where I lay in bed crying from the pain, the phone calls made asking for help with Kate, the trips to Urgent Care for medications, the frightening blackouts, the dizziness that made me cringe at the thought of bending over.  There were days I wondered if I had the strength to make it through another.  Or to even make it through that day itself.

At 3 months post-op I feel good.  Really good.  A newly made friend mentioned yesterday she is amazed at how well my recovery has gone.  I’ve thought the same thing many, many times over the last 3 months.  I feel very fortunate that the surgery was so successful and that I rebounded so well.  Stories of others told tales of being in bed constantly for 6-8 weeks, taking 6 months to muster the energy to walk around the block and post-surgical complications that required a shunt to drain fluid buildup or more surgeries.

As the time passes and I regain my strength, I feel the edges of the memories start to blur and soften.  The pain of the past isn’t as sharp.  I no longer break out in a cold sweat when I think about how horrible the pain pump made me feel after being transferred out of Neuro Critical Care unit.  My stomach doesn’t turn when I run my fingers over my scar.  I wake up in the morning and look forward to the day, no longer bracing myself for the pain that will descend upon standing.

I’m focusing now on living my life again.  A life free of headaches and chronic pain; a life full of adventure, laughter and love.

But in doing so I wonder what will come of this space.  This was my place to talk about the chiari.  To talk about the pain, the fear, the uncertainty.  My head is okay now–it no longer brings me pain.  There is no more fear or uncertainty about the future.  Surgery has come and gone; “recovery” is transitioning into “recovered”.

Does this blog serve a purpose anymore?

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.