No News

Really is good news.

Life is progressing on track here in our household.

Recovery is going well.  Much better than I anticipated, and for that I’m grateful.

The sutures were removed yesterday making the incision feel much better.  For the most part the incision itself doesn’t bother me (minus the occasional itch of healing skin).  I’m now feeling the pain of what was the “trauma” induced by the surgery.  Even that pain isn’t bad though.  Easily controlled by narcotics that I’m trying to taper off of.  And by far no where near the pain of the headaches pre-surgery.  At times I feel as though I’m taking the easy way out by taking the narcotics.  As if I should be able to tough my way through this.

After “toughing” my way through the pain for so long, I believe that it’s alright to use the pain medications to get through this comfortably.  I don’t need to be tough all of the time.

The fatigue is the hardest battle right now.  My body is exhausted, especially my neck.  The muscles evidently need time to heal and regain their strength.  Simple things such as taking a shower and going to an appointment wear me out, having to hold my head up for a length of time.  This will get better with time and perhaps physical therapy as well.

My days are slow and quiet — I rotate between the recliner, the couch and the bed.  Today Cris and I took a short walk/stroll around the neighborhood to enjoy the beautiful fall afternoon.

The change in the pace of our life is nice.  Perhaps we needed to be reminded to slow down, if only for a short time.

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Cause and Effect

I measure the quality of a day based upon the pain I’m in and what I can do to relieve it.  Good days are days where I can take just ibuprofen or excedrin migraine and feel alright.  Bad days are days where I have to take my heavy duty meds (my migraine ones) and chase it with narcotics and sleep.

The problem with good days is that I find myself doing way more than I should.  When I feel good I push my limits and try to get as much done as possible.  I know that it’s me taking advantage of feeling good; trying to get caught up on all the things that have been pushed aside on the bad days.  Coupled with those neglected household chores is the “to-do” list I’ve written as pre-surgery tasks.  Which means plenty of thing to occupy my time with when I have a good day.

The downside is that after I have a good Chiari day and push my limits, I wake up the next day feeling horrible.  Sometimes it is immediately a “bad” day; sometimes it is a moderate day that progresses to bad.

Then the cycle perpetuates.

I know that I need to set limits for myself and not overdo it.  I’m just not following through on that very well.

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More Opinions

(Opinion #2)

Last week, Thursday I met with the neurosurgeon here in Idaho Falls.  At first he was very friendly, easy going and seemed genuinely concerned about my case.  About 5 minutes into the consultation my appointment with Dr. Schmidt at the University of Utah was brought up and his demeanor completely changed.  I had hoped he would be more open to the idea that I had sought a second opinion but it seemed as if he was offended that HE was the second opinion.  Due to scheduling, it just worked out that I didn’t get into him first.

The appointment with Dr. Greenwald didn’t set well with me at all.  He focused solely on the headaches and blew off all of the other symptoms.  Even the lack of spinal fluid flow to the back of my brain.  His recommendation was to see a neurologist and do a complete work-up on my headaches and try to find both a preventative medication and a rescue medication that worked more efficiently.  After all, they were “just migraines”.

I was upset that he didn’t seem concerned about the other symptoms.  Dizziness, blackouts, visual disturbances, etc. seem to be pretty important symptoms to just glance over.  At least in my opinion.  But I was somewhat concerned that I had tunnel vision in regards to surgery and perhaps I should listen to his advice and meet with a neurologist.

(Opinion #3)

Fortunately, the neurologist’s office had a cancellation yesterday and called me Monday afternoon to see if I could take the appointment.  I took it with some hesitation and debated canceling it to save myself the trip across town.  I’m glad I opted to keep the appointment though, because Dr. Garland reaffirmed the need for surgery and validated that my other symptoms shouldn’t be overlooked.  Much of his concern centered around the occurrence of blackouts that has recently developed.  His opinion was that new symptoms like that were progression of the Chiari and a direct result of the compromised spinal fluid flow.  He felt like I might have a history of migraines but the constant headaches now are certainly Chiari related and need to be addressed through decompression surgery.  In his opinion, it would be ridiculous to do a work up before surgery–a waste of both his and my time.  His hope was that my headaches would be completely resolved post decompression, but if not to contact his office in 6-8 months (to give myself sufficient time for recovery) and we’d discuss options and possibly a different course of treatment for them, then.

So 2 out of 3 doctors recommend surgery.  I feel better knowing that more than one professional feels strongly about the condition and needing to treat it.  There are still fears but no questioning the decision to schedule the decompression.

Onward we continue to march…

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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 Always Vigilant Logan

I woke up this morning struggling with bouts of dizziness and weakness in my hands.  I found myself very unsteady and moving slowly.

With a therapy appointment at lunch I needed to take a shower and get ready to leave the house.   I got Kate settled in the recliner with a snack, turned the TV on one of her favorite shows and headed to the bathroom.   As the temperature rose in the bathroom from the steam, I could feel the unsteadiness getting worse.  I leaned myself against the shower wall for support.

About 30 seconds later, movement of the shower curtain caught the corner of my eye.  It’s not unusual for Kate to peak in so I wasn’t surprised.  I asked if she was okay or needed anything and waited for a response.  Nothing.  I asked again and listened for the adorable giggle she produces when she’s ignoring my questions.  Nothing, again.

I peaked out of the curtain to see if she had gotten into anything.  Instead of coming face to face with Kate’s beautiful blue eyes, I saw a brown furry head lift itself off the mat and heard his tail thump against the floor as it wagged.

There was Logan, by my side, watching over me.

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The Ever-Lasting Headache(s)

I started getting migraines in 5th or 6th grade.  That equates to a little more than 20 years of experience with them.  There were periods of time where I was having 3-4 a week.  But there were other periods of time where I went months without one.  There never seemed to be rhyme nor reason to their occurrence.  I just learned to function as well as I possibly could and tried to not let the pain stop me from doing things.

After I had Kate I had a fantastic break from them.  I’d get what I’d call “minor” headaches here and there but they were easily curbed by some Excedrin and a cup of coffee.

About 6 months ago they picked up in frequency again.  I just chalked them up to stress.  Work was busy and the threat of unemployment was looming.  For the first time in a long time I started refilling my Maxalt prescription every 4-6 weeks (there are 6 pills in every refill).  I noticed that I was taking either Excedrin, Tylenol or ibuprofen almost every day for the headaches and general aches and pains.

Early in June, I woke on a Sunday morning to the worst headache I have ever had.  At one point we counted I had thrown up 15 times in an hour.  Every single movement I made, every turn of my head brought on pain so badly it triggered an episode of vomiting.  Cris finally convinced me to go to Urgent Care to get injectable meds as nothing I was taking orally had any chance of being effective.  Even then, it wasn’t an instant cure.  Pain meds (i.e. narcotics) have never been fully effective for my headaches.  They only help to dull the pain and allow me to sleep.

Since then, I’ve been having them more and more frequently.  Bad ones, like the one I talked about in Pain, Pain, Go Away;  that’s a typical migraine headache for me.  I ran through my last script of 6 pills in 18 days.

The part that is hard though, is that for the past month I’ve woken up with a headache every single day.  Most days they start off as just a nagging, slightly annoying pain.  (Although Cris says that after this many years, my definition of “slightly annoying pain” may differ drastically from people that don’t deal with chronic pain.)  As the day goes on the pain intensifies.  Many days I opt to lay down for a half hour or so when Cris gets home as this provides a little relief.

Right now I’m averaging 1-2 days a week where the headaches are making me throw up upon waking and another 1-2 days where it progresses almost to that severity by early evening.  There hasn’t been a single day where the pain went away.

Another concern is that the symptoms that go with the headaches are now occurring when the pain isn’t as bad.  My nagging headaches now go hand in hand with dizziness, nausea (no vomiting) and trouble with my vision.

Perhaps I’m over-analyzing every symptom right now.  Maybe I’m just more aware of what’s going on and how these little things could be related to the Chiari malformation.

Or maybe I’m allowing myself to admit that there is something wrong and I don’t have to brush aside all of these random symptoms that seem to have no explanation.

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Finding Relief, Albeit Fleeting

There are days that I rely too heavily on the security of my house.  It’s easier to stay inside with the curtains drawn, in comfy clothes instead of showering, getting dressed and braving the heat and sunlight.  When I sit at home though it allows me to focus on the aches and pains, the nagging pain that originates in the back of my head.  Getting out of the house helps me to push it aside (sometimes) and focus on other things.

Too much lately I’ve been hiding in my house.  I knew that it would do good for both Kate and I to get out today.  After lunch we suited up and headed to the aquatic center in town.

We spent close to 90 minutes in the water this afternoon.  Splashing, laughing and playing.  With each trip Kate is overcoming more fears and becoming braver.  We spent a good portion of our time in the regular section of the pool where the water is about 4 feet deep.  Kate loved to sit on the side of the pool and splash, allowing me to tread water next to her or I’d carry her around bouncing, going underwater and letting her “float”.  When in the water I felt good.  Better than I can remember in a while.  My headache disappeared, my vision was clear and the pain in my neck/back was nonexistent.  I left the aquatic center feeling refreshed and energized.

Less than 15 minutes later I pulled into our subdivision.  As I reached into the backseat to get Kate unbuckled, I felt the familar pressure in the back of my head and caught glimpses of black floaters in my vision.

Although fleeting, it was nice to have some time where I felt normal.

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