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Archive for the ‘recovery’ Category

A Year Gone By

One year ago today, I told my husband I loved him and tried not to cry as they wheeled me toward the operating room. My thoughts vacillated between the scary “what ifs” involved with brain surgery and the hope of a new, improved life.

The summer had been a whirlwind with the Chiari diagnosis in early July, appointments with neurosurgeons and neurologists and then planning for the surgery we felt was the best path for us.  As much as I tried to cherish the moments leading up to October 2nd it felt as they had slipped so quickly through my fingers.  So much of my memories were veiled in pain and fear of the unknown.

With the help of a fantastic neurosurgeon and the support of an amazing network of family and friends–too many to list right now–I came through surgery with flying colors.  The first few days following the ordeal are very fuzzy, which now mimic the memories of the headaches and pain that used to plague me as well.  As my body healed in the first few weeks after surgery it became evident how successful the procedure had been.

Now, a year later, I’m grateful for the opportunity I’ve been given.  I’m grateful we made the decision to travel to Salt Lake to meet with Dr. Schmidt at the University of Utah instead of relying solely on the opinion of a local neurosurgeon.  I’m grateful that I never had to find out about the scare “what ifs” of the surgery.  I’m grateful to live (mainly) pain and symptom free with an occasional headache peppered into my life to keep me humble.  I’m grateful that I was a positive statistic in this game of what appears to be chance at times.

A year ago, with the help of many, I kicked Chiari’s ass.

I AM A BRAIN SURGERY SURVIVOR!

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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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Announcement

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.

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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.

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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?

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Surgical Follow-up

Tuesday of this week, we made the jaunt back down to the University of Utah for a CT scan and a follow-up appointment with the neurosurgeon.

Thankfully, everything looks fantastic.   The head CT shows that surgery has completely restored the flow of spinal fluid in/out of my brain.   Dr. Schmidt has concluded the to surgery to be “perfectly successful” and was pleased to see me doing so well.   He feels there is no need for physical therapy at this time, just some light stretching and massage to relieve the lingering tenderness and stiffness in my neck.

Personally, I feel really good (especially after fully recovering from the swine flu).   Without a doubt, the most miraculous aspect of all of this is my constant headaches are gone.   My energy is still low, but every day I continue to see improvements.

It’s hard to believe that as of today, it has been 6-weeks since the surgery.   This six weeks has flown by so much more quickly than the six week span between the initial appointment in Salt Lake City and the surgery.

We will be eternally grateful for the friends and family who have volunteered their time to come to Utah/Idaho and help out —  my sister Krystal, my friend Kristin, Cris’ sister Jessica, his Aunt Renee and his Mom — simply saying thank you seems to fall incredibly short in terms of letting them know how much their help has meant to our family.

As I’ve said many times in the last 6 weeks, especially in the last 3 days, we have much to be thankful for this Thanksgiving.

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Stalled Out

My recovery has been temporarily put on hold due to H1N1.  Yeah, you read that right.  H1N1.  😦

10 days ago I started sneezing.  Trying to be optimistic I attributed it to a change in the weather or worse case scenario a run of the mill, common cold.  Although sneezing was incredibly painful to my surgical site I gritted my teeth and hoped sudafed would ease the symptoms.

A few days passed and the sneezing was accompanied by an annoying, and very painful, cough.  I continued to hold out hope that it was only a cold and dosed myself with sudafed.  This past Monday rolled around and I found myself calling my nurse practitioner for some pain medication as the surgical site was aggravated enough that 800mg of motrin couldn’t/wouldn’t dull the pain.

Then everything took a turn for the worst.  Monday night I started running a low-grade fever and found myself hugging the toilet bowl.

Tuesday the fever kept climbing and the vomiting continued.  A flu swab at the NP’s office came back positive and I was definitively diagnosed with swine flu.  Even with the precautions we’d been taking to avoid bringing any kind of sick germs into the household, they had come in and attacked the person with the weakest immune system.  Truthfully, it felt like a huge defeat and the diagnosis was accompanied by many a curse word.

I started immediately on Tamiflu to help lessen the severity; I think we succeeded in catching it early enough that it didn’t hit too hard.  I’m still coughing a little and feel completely drained, but much improved over earlier this week.

Now our hope is that no one else in the house gets sick.

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