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Archive for August, 2009

Avoidance Issues

Since the appointment in Salt Lake City, I’ve focused my time and attention on the to-do list that seems to be a mile long.  I’ve been working my way through phone calls and emails to let people know what’s going on.  Trying to figure out lodging for everyone while I’m in the hospital; scheduling family/friends to help with my recovery; looking at Halloween costumes for Kate; coming up with birthday ideas for both her and Cris.

Focusing on this little stuff keeps me from thinking about the overall picture.  This trivial stuff allows me to push aside the big scary thoughts about surgery.  It allows me to stay busy enough that my eyes don’t fill with tears and my heart doesn’t skip.

My therapist told me that although it’s good I realize what I’m doing, I need to not do it.  I need to hand off some of those tasks to Cris and I need to take the time to focus on the fact that I AM having surgery in 34 days.

As hard as I try to avoid thinking about it, with each passing day it creeps closer and I need to be ready emotionally.

Maybe I’ll start thinking about it tomorrow.  Maybe.  😉

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A Friend Who Cares

Written by Henri Nouwen

When we honestly ask ourselves which person in our lives
mean the most to us,
we often find that it is those who,
instead of giving advice, solutions, or cures,
have chosen rather to share our pain
and touch our wounds with a warm and tender hand.
The friend who can be silent with us
in a moment of despair or confusion,
who can stay with us in an hour of grief and bereavement,
who can tolerate not knowing, not curing, not healing
and face with us the reality of our powerlessness,
that is a friend who cares.

Thank you, to all, who are sharing this journey with me and helping to give me strength when I feel as though I have run out.  I will never be able to demonstrate how much it means to me.

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Brain Humor

Some days I struggle with my memory and thought processes:

  • Kate asks me for a snack and I forget what it is she wants before I get to the pantry.
  • I walk into the bathroom to take headache medicine and can’t remember why I went in there.
  • I put salad mix in the freezer when putting groceries away.
  • I give the dogs food and 10 minutes later can’t remember if I fed them.

Those kind of things.  It’s usually something small and thankfully not overly important.  Until now I’ve blown it off.  I just attributed it to being tired, to having too many things to do, too many things on my mind.  Now I wonder if it’s related to the Chiari.  It still could just be related to being tired, to having too much to do, too much on mind but I’m going to blame it on my big brain for now.  😉

Yesterday’s scattered thought process really took the cake.

Now that I’m unemployed from the University, I want to rollover my 401K contribution to a Principal IRA I have from a previous 401K account.  This would put all of the funds into one account.  Yesterday morning I printed off the paperwork, filled it all out, addressed an envelope and shoved the paperwork inside.  It was in just a regular business envelope.

I also had a large yellow envelope that I had addressed with some items for a friend in Nevada.  It needed to go to the Post Office to be metered since I didn’t want to do it online and send it priority mail.

Both envelopes were sitting here on the kitchen table as I was preparing them to take the Post Office.  I grabbed my wallet out of my purse to get a stamp for the business envelope.  Without paying attention I pulled my debit card out instead, stuck it inside the envelope, licked it and sealed it up tight.

Only when I went to close my wallet did I realize what I did.  D’oh!  I sliced the envelope open, safely secured my debit card in my wallet where it belongs and put my 401K paperwork into a new, freshly addressed envelope.  Once again I grabbed my wallet to get a stamp for it.  This time, without paying attention, I stuck the stamp on the large yellow envelope that needed to be metered at the Post Office.  D’oh (again)!

Thankfully I gently pulled the stamp off and stuck it on the business envelope with no further mishaps.

I hope that this takes a hiatus with the headaches post-October 2nd.  One of these days I might not catch the debit card in the envelope mistake before dropping it in the mail slot.

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The Long(er) Version

My head is still reeling from the appointment on Wednesday and I’ve been trying to make phone calls to let people know what’s going on.  Hence the delay in getting this up.

We met with a neurosurgeon at the University of Utah on Wednesday. I really, really like the doctor and felt very comfortable with him from the beginning of the appointment.  Although running slightly late for my appointment, he spent an hour in the exam room with us for the consultation.  He pulled up the MRI images from July and showed us exactly what was going inside this big brain of mine.

The Chiari malformation is crowding the spinal column and severely impeding the flow of spinal fluid in/out of my brain.  This crowding and obstruction of fluid flow is the cause for the headaches and the other symptoms.

He never faltered on the recommendation to do surgery. After his examination and looking at the MRI from July he immediately recommended it. According to him, I am a textbook case and he feels that I would highly benefit from decompression surgery.

To look more in depth at the cerebral spinal fluid flow, he ordered more in depth MRI’s.  Fortunately for us they could literally get me in right then.  While on the phone with our insurance company for pre-authorization I hurried across the medical building to the MRI department.  An hour and a half later I was dressed once again and discussing with Cris the next step.

Before the appointment, and on the drive down to Salt Lake on Wednesday, we had discusses what we would do IF he recommended the decompression surgery.  Although both of us are scared at the though of brain surgery we had agreed that if it was recommended we wouldn’t hesitate to have it done.  Neither of us wants it to progress to the point of permanent damage and we’re both concerned about how quickly is has been progressing lately.

To save us some phone calls we made our way back to the nurses’ station in the Neurosurgery Clinic to talk about scheduling surgery.  After another wait in the waiting room, we were brought back to an exam room and told that Dr. Schmidt was finishing up with a patient and would see us again to go over the day’s MRI images.

The new images further solidified his recommendation. Not only is the flow of cerebral spinal fluid severely compromised due to obstruction into the spinal column, there is NO flow at all into the back of my brain. When I move my head to look up or down the Chiari forms little pegs and “stabs” into the spinal column and cord.  If it’s not operated on and the pressure isn’t released, it has the potential to cause permanent damage and possible paralysis.

Surgery is set for Friday, October 2nd (6 weeks from today) down at the University of Utah. I will be in ICU for 24 hours post-surgery and will most likely be in the hospital 3-5 days total.  After my release he recommends that we stay in Salt Lake a couple of days to allow me to rest before attempting the 4-hour drive to Idaho Falls.

Recovery will be tough and long.  I am looking at 4-6 weeks of very limited activity afterward.  Full recovery could take months to a year.  It all depends on my body and how quickly it heals itself.

The neurosurgeon feels confident that the decompression surgery will provide fantastic relief and a vast improvement in my quality of life.

But frankly, it’s still brain surgery.  And that is scary.

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The Short Update

IMG_1520

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On the Road

And away we go…

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Pivotal Day Ahead

When I made the appointment three weeks ago, it felt as it would take forever for August 19th to arrive.  I felt like I couldn’t make it the three weeks to the appointment.  As I sit here tonight in the silence of the house I wish that I could stop time and not move forward to tomorrow.

I’m scared that the neurosurgeon will want to go ahead with surgery.

I’m scared that on the other hand, the neurosurgeon will want to treat the symptoms instead of surgery.

I don’t want to have my head cracked open but I don’t want to live doped on pain medications for who knows how long.  I want to feel better. I want to fix the problem instead of managing the symptoms.

I don’t want to worry about the headaches interfering with plans; I don’t want the vision disturbances to make me hesitant to drive; I don’t want the dizziness to become dangerous.  I don’t like how the symptoms are progressing.  It scares me (and many of you).

As anxious as I am for some answers and some directions, I know that tomorrow is a huge day for us.  Just as the initial diagnosis was life altering, I feel there is much hanging in the balance tonight, waiting for the pendulum to swing in one direction or the other.

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