Holidays

It's hard to believe Christmas has passed - sometimes it seems like it was just summer.  And other times it feels like this season has dragged on forever.

I'm able to take it slower at work now, between Thanksgiving and Christmas is our busiest time and now that that's passed it's a lot easier.  I plan on taking some time off and getting back into a regular routine.

We've had a four legged visitor this Christmas - a friend from the flyball team's dog, Indy.  She's a lovely (and VERY well trained) border collie.  It's been really nice to have a change of pace and a dog I can bring to work with me.  And a dog that will listen to me all the time, not just some of the time.  My dogs get along very well with her, and they've even played a bit together.  Indy is very pretty, which gave me an excuse to get out my camera.

We had a nice Christmas, Jeff and I celebrated together on Christmas eve and then spent Christmas day at his folk's house.  I'm looking forward to a visit from my parents next week.

I think the amount of hours I have been working has caused my recovery to backslide a bit.  My plan from here is to take it slow and establish a healthy balance of work, rest, and exercise.  Trying to stay positive.

The Annual Christmas photo

Every year I make my husband drag the dogs into the studio so we can take a holiday photo.  This year he even brought the cat.  I don't really know why we do a Christmas photo, we don't have kids and the only thing that changes from year to year is my hair.  But my husband humors me and we do a pic.

A stare down: Georgia vs Allie.

Dozer finally notices I have a cat in my arms.
A very angry cat with a bad haircut.

After a little photoshop work, we ended up with this:

Merry Christmas to all.  I'm trying to stay hopeful this new year will bring me peace and relief from pain.

Aches and pains. Still.

There are a lot of things I don't understand about life.  Like why people ever wore hypercolor, or what makes Facebook so addicting.  But I guess what I am struggling with understanding most is why I don't feel any better.

I had my surgery on July 26th.  It will soon be 5 months since I went under the knife.  That's crazy, seems like it happened yesterday.  For many weeks I told myself to trust and be patient, that it will take a long time to heal.  But now, almost 5 months later, I am out of patience.  I can no longer tell myself to wait, that relief will come.  I have waited so long, and no changes.  In fact, I am actually feeling a bit worse.  Before surgery I used to think, 'I will never get any lower, there is no lower.'  But I am.  I am lower than when I started this journey.  Not only am I physically feeling worse, but mentally I am worn out.  Getting my hopes up is exhausting.

There is nothing to say or do to make this better.  I don't want any words of encouragement.  I just wanted to say I am not better.  I am not healed.  I am not recovered.  I have no choice but to continue on with life, to continue to wait, to convince myself to be patient.  But how can you be patient for something you aren't sure will ever come?

Gifts are for giving

I had my birthday a bit ago, and just last weekend celebrated with my dear friends Erin and Leo.  This is the gift they got me - they're mugs with zippers on them!  (for those of you who don't know, those of us who have had this surgery are called 'zipperheads' because the scar resembles a zipper) Amazing.  Love them, and such a sweet and thoughtful gift.

Back to work

This week and last I've gone back to work.  I've been increasing my hours slowly, and hopefully by next week I'll be on a normal full time schedule.

I'm struggling with my mornings right now.  As much as I want to get up and get my day going, mornings seem to really be killing me.  I am so groggy in the mornings, and still very achey.  I want so badly to be a morning person!  It's embarrassing to have such a hard time getting up in the mornings - it's not because I'm lazy or just like to sleep.  Some mornings, I seriously just cannot get up.  I can't get out of my bed.  I can't explain it any other way.  I hate it.  I could do so much more with my life if I could get up early and get on with everything.

It's hard.  It makes me mad.  It makes me tired.

A trip to the ER

It ended up being fine, so let's put that out there right off the bat.

Yesterday I was shaken from my sleep with a terrible, pulsating headache.  A pain I hadn't felt since I was in the hospital.  I tried to ignore it, I even got to work.  It just kept getting worse.  It got to the point where I couldn't make any sudden movements or it would get worse.  I couldn't bend down, it was horrible.  After some prodding from my coworkers I called my primary, since at this point Milwaukee was closed.  Long story short, the doc on call said to go to the ER because if I were to come see her that's where she would send me.

At this point my dear husband was already sent home from work - I had called and told him that I may be going into the ER.  His boss kicked him out without waiting to see if I indeed was going to the ER.  So he got home and we went.

After several hours, a CT scan, and blood test, everything came back normal.  I was given morphine (after a VERY painful attempt in my right arm, they switched to my left), and told that if it persists I need to come back for a lumbar puncture.  I am happy to report I am feeling much better today.

My only idea about why this happened is this:  I ran for the first time the day before, it was a very short run and it was intervals so just 90 seconds at a time.  Maybe that jarred something and caused it to inflame?  The ER doc didn't think so, but that's my only idea about why this happened.  It was a HUGE headache, i mean a monster.  It makes me mad, it's been three months and I can't even go for a jog without paying heavily for it?

So much to say

I keep thinking that I should update the blog, but I don't have much to say.  The memory foam mattress topper came yesterday, and I slept on it last night.  It's much better than sleeping on that bed without it, but still a little sore.  Maybe it takes some getting used to.  I had to sleep on the guest bed a bit last night, which I think the cat enjoyed.  He has now taken to sleeping in there all the time, which is funny.  It's his own room.

I'm still having headaches, although I haven't had the real head-splitting kind in about 2 weeks.  They wax and wane, and some sort of pain is always there.  I'm hoping that will subside as I continue to heal.

In other news, I am back to work and back to the gym.  Good news on both accounts.  I think this week I'll be back to work mostly full time, although I'm just going to play it by ear.  Being back at the gym has been great, although I find myself cautious and wanting to do a lot but not wanting to over do it...  So far, so good.

To flyball practice tonight.  In two weeks Georgia and I will run in a tournament in Auburn, but just for one day.  It's my first tournament back.  I think two days would have been too much, so I'm thankful we can run just one.  I'm working on speeding her up, so maybe we'll have a new personal best!

See, nothing exciting.

Keep on keepin' on.

Today was my second day back at work.  My job can be very physically demanding, but also there's a lot of computer work to be done.  Yesterday I spent the day on the computer organizing and catching up, and today I did computer work and actually did some shooting.  The camera is heavy, I can tell I am much weaker and tire very easily.  To be expected, I guess.  I've been recovering for over 11 weeks now (I can't believe it's been that long...), and that's a lot of time away from my job.  And away from my life in general.  Typically I work all day, go to the gym, come home and take care of the animals, eat dinner, go to bed.  I'm a major creature of habit, being out of my routine for so long has been a bit jarring.

I am so thankful for my job.  My boss has been so amazingly flexible that it has taken so much stress away from me.  Especially since I've been away for much longer than I thought.  I'm lucky to be going back to a job that I love, and I'm able to go at my own pace.

Speaking of pace, I got back into the gym this week.  Sunday, actually.  I have missed the gym so much. SO. MUCH.  I've had to hold myself back a bit to be sure I don't over do it.

I feel like since the moment I got to the hospital that morning I've been climbing up hill.  As long as I can keep climbing, I'll be ok.  I'm still having the headaches, and working hard on figuring out how to best reduce my nightly leg pain.  It's a constant adjustment to learn what my body can do and what it can't, and it's definitely a learning process.

The next step

After several nights sleeping in our guest room (the mattress is much firmer than our mattress) I have felt a lot of relief from my night time leg pain - that's the good news!  I have ordered a memory foam mattress topper in a twin size, I'm going to try putting that on top of our existing mattress.  Jeff loves our mattress and would rather not get a new one if he doesn't have to, so we're trying this first.

As far as headaches go, I am still experiencing pain.  Well, I'm still experiencing leg pain as well as headaches.  The neck brace didn't seem to change my symptoms at all, nothing noticeable.  I haven't reported that to Dr. Heffez yet, I've been waiting a few days to see if things have gotten worse since I've taken the brace off (this past Wednesday).

I am going back to work this week, I'm starting half time and will work up to being back full time again.  I still get tired easily and don't have much muscle endurance.  It is still uncomfortable to bend over at times.  I am working on getting a bit of my 'normal' life back.

A sleeping experiment

I had a thought the other night while tossing and turning to try to escape the horrible pain that gripped my legs and back.  I decided to do an experiment - I decided to try sleeping in our guest room to see if that has any effect on my pain level.  The guest bed is significantly firmer than our luxurious king.  Although everything I've read makes me think we made the right choice in our mattress softness (I'm a side sleeper, neither of us is very heavy), couldn't hurt to try to change a variable.  

So the past three nights I've been sleeping in the guest bed.  Jeff joined me once, to his dismay.  He hates that bed.  Otherwise he's been working nights so we aren't sleeping at the same time anyway.  I'm hesitant to disclose my experiment results because I'm afraid I'll jinx it.  So far, my leg pain has been the familiar dull aching that I experience all day, but has no intensified in the night.  Amazing.  Secondly, my back pain has lessened, then was the same, then lessened.  That may have to do with the amount of hours I'm laying down, no matter what bed.

Do I think changing mattresses will solve my leg pain?  No.  not in the least.  But, the spike in pain I experience through the night that keeps me awake may be able to be lessened or gone completely.  I don't have a plan at the moment, I'm going to sleep in there again tonight and then discuss with my partner what we should do.  I feel like a sleep number bed may be calling me...  Hmm... I wonder what my sleep number will be?

More aches and pains.

The last few nights my leg pain has been worse than it ever has been.  It wakes me up, even after I've taken a sleeping pills, and I toss and turn, hoping it will get better.  It doesn't.  I don't know what is causing this pain.  My gut tells me it's a combination of things, so I'm trying to figure out at least something so I can have a little relief.  The pain used to be mostly concentrated in my calves, now it's my feet, my ankles, legs, lower back...  I've seen a pediatrist to see if the problem is coming from my feet.  I overpronate, and have (expensive!) orthotics.  And I wear them almost all the time.  But no relief.

It seems like whatever I do, it hurts.  If I rest, if I walk, it hurts.

This day marks the halfway point with my neck brace.  I'm a bit more used to it than at first, although still dream of someone strangling me.  I'm definitely antsy to get it off.  As I mentioned, I still have the terrible leg/lower body pain, as well as pain between my shoulder blades and headaches.  The headaches (I think) are getting better.  Although they are still bad sometimes, it's more like a dull ache.  That's what it was like before surgery...  I just need to trust it takes time.

In other news, I went out on the town with my friends on Tuesday.  It was so much fun!  AND, it was semi-costumey so I could wear a boa and feel way less self conscience about the neck brace.

Me, Erin, and Christina at a sneak peek of Teatro Zinzanni's new show

Erin and me pre-show.

It was a fun night.  I paid dearly for it that night and the next day, my legs were screaming.  It's making me crazy that they hurt so bad and no one knows why.  It was merely a guess that the pain was caused by the malformation.  I'm very fearful it is not.

Recovery: Granola

Yesterday was another day of a bit of baking - granola this time.  I've never made granola, but my mom used to.  So I thought I'd try.

I made this cinnamon raisin granola, but didn't have coconut.  I used crushed pecans instead.  It turned out really well!  I gave some to a friend, and ate most of the rest this morning.  I'll definitely make that one again.  Made the house smell good, too.

Early to bed, early to rise

UGH.  How could I have ever thought that making a dentist appointment for 8am was a good idea?  I hate getting up early.  Hate it.  Ask my husband, he says I only get up before 8:30 if we have to fly somewhere. I don't think it's because I'm lazy, I think it's because of several things.  I sleep pretty poorly until the early morning, so I think getting up early interrupts my best sleep.  Also, a symptom of Chaiari Malformation is exhaustion and fatigue, so that doesn't help.

But alas, I got up at 7am to get to the dentist.  And I have to come clean.  I took my neck brace off for the appt.  I didn't think I would be able to lay in that chair with it (anytime there's pressure on the back it's an instant headache), and I just didn't want to deal with all the questions.  Even though my dentist knew I was having the surgery, and was very forgiving about the larger amount of plaque I had accrued.

It's noon and I've lost my steam.  I put the laundry room somewhat back together, but I can't find the right place that each cupboard door goes.  I thought they were all the same, but not true.  So I got frustrated, three doors are on, three are off.  I wanted to have it all back together by the time my husband got home, but looks like that isn't going to happen.

So far, the neck brace hasn't helped my symptoms at all.  I'm getting a little more used to the looks of sympathy, though.  Tomorrow my friend Erin and I head down to Seattle for a Yelp Elite event - it's sort of a costumey type party, so I'll be wearing a boa.  That will hide the brace well I think.  It's for a preview of Teatro Zinzanni's new show, super fun.

Still not back to work, although am working from home as I said last week.  I don't have a timeline for when I'll return.

Day four of the neck brace

The first night I had to sleep in this neck brace was fairly easy, which probably had a lot to do with the 2 vicodin that I took.  The nights after that have been a bit tougher - tossing and turning.  The brace is a lot more uncomfortable than I thought it was going to be.  It has to be on tight so it keeps my chin up, which means the back presses into the incision site.  I guess there's isn't much more to say about it - two weeks in a neck brace sucks, no matter how you look at it.

Jeff is away at his yearly trip to San Diego (aka Man Diego) and I'm working on the laundry room while he is gone.  Our laundry room is a pit, there isn't much getting around that.  

The Grover-blue walls have been primed now, as have the cupboards.

Projects are always bigger than they seem...  I'm trying to Killz the cupboards but some kind of stain is seeping through all three coats of it, so I have to find some kind of sealer to prevent that from continuing.  Jeff tore out the small (and very gross) vanity/sink that was in there, only to discover there was no flooring but cement underneath.  Looks like we'll be doing new flooring in there, too!  

My goal here is to get everything primed and the cupboards back on and the room back together.  We'll be painting it but we will want to do that after the new floor is in and the molding is up.  One thing after another, it just gets bigger and bigger.  Isn't that the way it always goes?  Nothing is ever as simple as it seems.

Special delivery

Just received the neck brace.  This is going to be a long two weeks.

still waiting.

As rough of a time as I've been having, I realize something.  I thought the hard part of this whole thing was the stay in the hospital.  And the few weeks after.  And that was hard.  But it really doesn't compare to this kind of hard.  Because the time in the hospital and right after was supposed to be hard.  It isn't supposed to be hard any more.  I'm not supposed to still have deafening ringing in my ears, or headaches, or leg pain, or exhaustion.  I'm supposed to be better.  I think that's what makes it so hard right now.

I'm still waiting on the neck brace.  Super irritating, I paid for rush shipping but it's been 4 days.  I'd love to give them an angry call, but I don't have the energy for that.

In other news, I've begun working from home more regularly from home.  Thanks to Dropbox!  It been super helpful, Rachele just drops the files for me to work on in there, I work them, and then she grabs them back out.  It's very cool.

Waiting for the delivery

My mom helped my find the right neck brace that I'm supposed to wear, I had to order it online because apparently the general population has a short neck.  Boo to all of you short necked people!  It was hard to find something that was tall enough without being huge length-wise.  I learned something new - the circumference of my neck is 13 inches.  Who knew.

I still wait to improve.  I'm sleeping better, although now I'm sleeping a ton.  Maybe that means my body is healing and needs a lot of rest.  I hope so.  I still have headaches, worse than before the surgery, as well as aches in my neck and legs.  I will wait and see what 2 weeks wearing a neck brace does and then go from there I suppose.

What a pain in the neck.

If you read my previous post, you know that I am to wear a neck brace for the next two weeks.  Who would have thought it would be a huge pain in the ass to find one?  Apparently I have a very abnormally long neck, which is making things harder.  I just want to hurry up and find one so I can hurry up and be done.

6 Weeks: Backslide

I just returned from my 6 week follow up with Dr. Heffez.  My dad and I traveled to Milwaukee from my parent's house in Chelsea, MI.  It's about a 6 hour drive, then I flew out of Milwaukee back home.

Long story short is this: The new MRI images are amazing.  I don't have a copy of that MRI but am hoping to get one soon.  The images look totally different, there is a ton of 'white space' around my brain stem now, and the arteries aren't even touching the brainstem where they used to be distorted into almond shapes before because they were being crushed.  Dr. Heffez even pointed out the plate he put in to 'keep my brain from falling out.'  His words.  It was funny.

That being said, he is not happy with the lack of progress I have made and was hoping for more relief from my symptoms.  He looked back at his post op notes and he said there was 'a lot of deformity that was corrected' so I think there was more than he thought initially.  He is pretty baffled by my leg pain, but does want to give it more time because there was so much damage that needs to right itself.

He looked again at my cervical spine MRI and my lumbar spine images.  In the lumbar spine he is looking for something called tethered cord (TC), which means basically the tissue of the spinal cord attaches to the spine sort of, and causes a lot of discomfort and leg pain.  I have a bit of 'abnormal activity' in my 4 lumbar vertebrae, and he said if it were any lower down the spinal cord it would be considered tethered cord.  But since it isn't, he's skeptical.  He's also skeptical because I present some symptoms of TC but not all the classic symptoms.  He is baffled, I think.  Which is not what I want.

He is also a little concerned about a bit of my cervical spine (neck) images.  It's hard to explain without an image, but basically there's a part of the lower brain stem/upper spinal cord (not really sure what it is, to be honest) that is supposed to 'float' within the spinal fluid column.  In my image, it shows the inner cord to start in the middle, go down a bit and veer off and touch my vertebrae.  That's not good, I guess.  So what does that mean?

That means I now need to wear a 'soft cervical collar' aka a neck brace 24-7 for 2 weeks.  The hypothesis is that if I spend a lot of time with my chin vertical and not tilted down (tugging on that spot that's connected to the bone) it will give me relief.  Wearing the brace is sort of an experiment - if I experience relief, then I guess there is quite a bit of physical therapy and postural therapy that can be done to really improve that.

I guess the bottom line is that he wants to see more improvement, but because there was so much corrected in there I need more time.  He is fairly baffled by the leg pain, so I think he's trying the neck brace to try to figure out that pain, and some of the other pain may resolved itself while I continue to heal.

I don't have to tell you that I'm frustrated, I think that's obvious.  And to feel like I'm going backwards - being able to do more, then having to be confined to a neck brace feels like a backslide.  It is what it is.  If I get any tryingtobefunny comments about the neck brace, I will definitely punch said person in the throat.  Not in the mood to joke about this.  Annoyed.  Mad.  So let's just all pretend it doesn't exist, ok?

Well wishes

First, I want to wish my facebook Chiari friend Trina good luck - she has her surgery on Tuesday (the day before my 6 week check up appt).  Trina, you'll do awesome.  There's nothing to say to lessen your fear, but know that I'm pulling for you and hoping for a speedy recovery for you!  The hospital is tough, but the ICU nurses are awesome, they will take very good care of you.  Keep your thumb on the pain button. =)

Tomorrow we leave for Michigan, then my dad and I travel to Milwaukee for my appointment.  I get another MRI and then meet with Dr. Heffez.  Hopefully my dad and I will be able to stop by Kopp's and try their sundae of the month.  I would get another MRI just for some Kopp's custard.  Shoot, I would get another MRI for a visit to Northpointe Snackbar.  (It's funny how familiar Milwaukee is becoming in my mind.  And strange how fond my memories of that place are.)

On another note, I went into a hospital yesterday.  I had no idea how jarring that would be for me.  I'm interviewing to volunteer with Dozer at Swedish Hospital in Edmonds.  I walked in (Dozer wasn't with me this time), I was fine...  Until I saw someone wheeling by on a gurney...  My stomach dropped and I immediately had butterflies fluttering around in my stomach.  It definitely brought me back to that morning before surgery.  I have never had anxiety dealing with hospitals, not even though I've had a million MRIs and X Rays and CTs and all kinds of things.  But after my surgery experience, I have a whole new outlook on hospitals.  I think it may end up being a blessing in the end, hopefully that will help me get in the shoes of the patients that Dozer and I see...  I won't start visiting for a few weeks, so I can get a bit more distance between that time and my surgery.  That was a hard time.

Recovery: Mac and cheese

At the suggestion of my friend Laura, I will start putting the recipes I'm trying during this recovery time.

I made this mac and cheese the other day.  Here are my suggestions:  add a bit of milk, lessen the amount of bread crumbs (they are overpowering) and add more cheddar!  It isn't cheesy enough without more cheddar.  With those changes, I'd give the recipe 4 stars.  Without them, 2 stars.  It tastes good, but it more a casserole than mac and cheese.

The sun is showing it's pretty little face today.  I'm headed to Steven's Hospital to start my volunteer orientation so that Dozer and I can visit as a pet partner team.  Next week I will be at my 6 week follow up appointment with Dr. Heffez.

Recovery: A Recipe

I made this yesterday.  It is delicious, dense, and comforting.

Apple Spice Cake


1 1/2 c all-purpose flour
1/2 c whole wheat flour
2 t baking powder
1/2 t salt
1/2 t ground cinnamon
1/4 t ground nutmeg
1/2 t ground cloves
pinch of allspice
6 T softened unsalted butter
6 T light brown sugar
1/4 c molasses
2 eggs
1 t vanilla
1/4 c applesauce
2 apples

• Preheat oven to 325, butter and flour a 5x9 loaf pan
• In medium bowl, whisk together both flours, baking powder, salt, and spices
• with electric mixer, beat butter and brown sugar til fluffy (approx 4 minutes).  Add molasses, add eggs one at a time, plus vanilla til well blended
• with mixer on low, add 1/2 flour mixture, beat in applesauce, add remaining flour mixture
• peel and core apples, cut them into 1/4 in cubes, fold into batter (it will be seem like a whole lot of apple and not enough batter, but it works)
• put into pan, bake for approx 1 hour

Someone else needs to try this recipe.  I had it for breakfast, but I also had it with ice cream.  It was like apple pie.

Baking is one thing I've been doing to keep myself occupied.  But I need to start giving more away.

Swelling

I've discovered a bit of swelling on the left side of the upper portion of my incision.  It hasn't been tender like that lately, and I'm concerned.  Maybe I slept on it wrong?  Not sure, the incision, up until now, has been healing so nicely and I was even getting my range of motion back.

Aside from the unusual swelling, I seem to be continuing as I was - nothing happening.  I don't feel better.  I cry to my mom often about this fact, and I am constantly reminded that everyone is different, and logically it will take a while for the indentations in my brainstem to right themselves.  I know I need to be patient.  I know I need to give myself a break.  But you have to understand that I miss doing 'normal' things.  I miss having a schedule, going to the gym, sleeping normally.  It is unclear at this point when I will be able to get back to a somewhat normal life.

Speaking of normal, Georgia and I got back to flyballing (that's a fun little video for ya, although does not feature a beautiful black dog with an underbite) last night.  What a treat that was!  Georgia has been missing practice so much, and I haven't been working with her like I should be.  She was so happy, huge grin on her doggy face.  And I was happy to be there, happy to be back with friends enjoying time with my dog.  I'm hoping I can get in some more bike rides with George before the sun disappears for the next 6 months.  Bike rides as in I ride my bike, and Georgia runs wildly next to it at top speed.  Good times.

6 week check up with Dr. Heffez next week.

Slow going

I have emails stacked up in my inbox to take care of, but am having a hard time getting to them.  I seem to have slid backwards a bit - I am very tired and can't seem to get a good sleeping pattern.  I often have trouble falling asleep, sometimes trouble staying asleep.  I either don't at all get enough sleep and lay there exhausted, or I zonk out and sleep til 11:15, like today.  And yet, I still don't feel rested.

My body is quite sore - the usual pre-surgery pain in addition to more stiffness than I have experienced lately.  It hurts my neck to yawn, there is still obviously a lot of healing left to do.

When I started this blog, I made a promise to be as real as I could be.  It doesn't do anyone any good for me to sugarcoat anything.  Yes, I am trying to stay positive.  But that doesn't mean I need to tell myself and others that this recovery is all lollipops and rainbows, it is neither.  It is frustrating.  It is tiring, confusing, and full of ups and downs.

Sunshine

Today I have made it my mission to soak up as much vitamin D as possible.  You never know how much longer the sunny days will last, especially out here, so I want to take full advantage.

I'm lucky to have a husband that says, "Enjoy the sun.  Don't waste time with chores."  Ahh.  Love that guy.

Did aquafit class at the gym last night, tonight I'll go to yoga.  It was great to feel my muscles moving and working last night, I left tired and happy.

Discoveries

I thought a lot of things before I had this surgeries.  Lots of things I hoped, feared, wondered.  Through these weeks (three weeks now) I've learned a lot of things about myself.

• After the first week/2 weeks, I actually enjoy the simplicity and quietness of my life.  I'm a creature of routine, and now that I am used to my routine of nothing, I enjoy it
• I like cooking/baking way more than I thought.  It's amazing, when you have the time to do it, it takes on a whole new meaning.
• I much prefer my current life as a somewhat recluse, although I always knew I wasn't a social butterfly
• as much as I didn't believe it, I had hoped so desperately that after the surgery, I would be magically fixed.  Feel, for the first time in so many years, my body working how it should.  That didn't happen of course, but I had no idea how much I had wanted that
• I thought I would miss driving, miss working, miss the hustle and bustle of running errands.  I don't miss any of it.  Maybe it will take more time before I do miss it...  
• I am way better at destressing myself than I thought.  Right now, the absolute only thing that I am 'stressed' about is my recovery - is the huge question mark.  Will I ever feel better?  I'm not stressed about getting back to work, about money, about time, I'm not even overly stressed about missing the gym.  It amazes me.

As you know if you've been following this blog, there has been no change in my symptoms.  I still am tormented by the deafening ringing in my ears at night, my legs still ache, my head still hurts.  In fact, in the past week and a half, I felt like my recovery has been stagnant.  I'm not going forward, but I'm not going back.  Who's to really know, I suppose.  

I have my check up appt on Sept 8th - I return to Milwaukee with my dad and get another MRI.  After that, my appt with Dr. Heffez.  In a way, I hope the MRI shows that there hasn't been much improvement in the 'grooves' in my brainstem, I feel like that would give me hope that I have a long way to go, not that I've come as far as I could have come.  Because so far, I seem to have gotten no where.

A gift

This is the quilt my mom made me for in the hospital.  I used it when I got out and was in the hotel recovering until I got my staples out, and I use it all the time now that I'm home.  The photos don't do it justice!

Let's get physical

I'm active every day now.  Well, more active than I was.  I'm taking walks every day at a now very fast pace, more like a shopping pace.  Not browsing in TJ Maxx shopping pace, like to and from store shopping pace.  I have two dogs, it was only a matter of time before they demanded to get out of the house.  It feels fine to walk, I get tired and my legs hurt.  But that's no different than pre-surgery.

Next week I plan to head to the gym (it will have been over 4 weeks since I went last!  Yowzah!) with a friend and jog in the pool.  Maybe I'll do a yoga class, too.  Yoga would be nice since it's a lot of stretching, and can be challenging or not.

That all being said, I'm still having a very hard time falling asleep.  It takes hours.  I'm not on much, if any, pain medication anymore, and I don't want to count on that to zonk me out.  I'm going to try taking a hot bath right before bed to see if that helps.  It's really annoying because once I do fall asleep it takes me forever to get up in the morning.  I'm so groggy.  If I could just shift that schedule up a bit, I'd be happy with that.

Went into work just a little bit this week, 3 hours total.  Whooaaa,  I know.  It was nice, I went in and did some work on the computer, and left.  It was nice to get out, but I'm not yet able to stay too long in once place since I'm still doing (loosely) 2 hours up 1/2 hour down.  I'm not in a hurry to get back.  I'm not really in a hurry to do anything, actually.

My opinion on Do's and Don'ts

As you can imagine, it's really hard to be a Chiarian.  Although people's symptoms look different, there is one thing that all Chiarians experience - some kind of chronic pain.  Chronic pain is such a difficult thing to live with, it wears down every aspect of your life.  It wears on you physically, mentally, emotionally, spiritually...

I've talked about how hard it is to be a Chiarian, but I haven't mentioned much about being a loved one of a Chiarian.  The person who deals with me the most is my husband, Jeff.    He could tell you all about being a supporter for a spouse in chronic pain, and I know it's not easy.  It's stressful, I bet you miss the person your loved one used to be, you hate that the pain colors everything they do.  I'm sure there are times you have no idea what to say.

Here are a few tips from a Chiarian about ways to support someone who may be going through surgery or has gone through surgery.  Please take this advice with a grain of salt, these are my experiences and reactions to 'advice' given to me.  And some of you who read this may have said these things to me - it's ok!  Know that I know you're coming from a good place.  And take into account my sarcastic personality.

- I can't tell you how many times I've heard "Take it one day at a time."  That makes me want to choke someone.  I can't really articulate why that is so frustrating to hear, probably because how else am I going to take life?  '

- When someone is going to have surgery, and they tell you about it, don't make a face that looks like you've seen a ghost.  Not just a ghost.  A naked ghost peeing on an American flag.  You know the face - bulging eyes, gaping mouth, complete shock and horror.  Don't you think the person who is having surgery is scared enough?  They don't need you to be freaked out, too.

- When someone tells you they are going to have surgery, don't make a face that looks like you just saw a box of puppies get thrown into a river.  Meaning, don't make the pity face.  Some Chiarians may want pity, most don't.  It's a demeaning reaction, it makes a person feel small.  It also amplifies the fear they may already be feeling.

- Surgery is a big deal.  There is a lot of anxiety leading up to surgery.  Just listen.  Don't try to downplay their fears, tell them it will be fine, it's invalidating.  Just be a good listener and let them know it's totally fine to be freaked out, you probably would be too.  It's ok to offer your surgery experience or hospital experience (ex, I was petrified about the catheder, my friend who had a baby told me about her experience with it and that helped a lot), but make sure the Chiarian knows you are not comparing your two experiences.  (Another ex, talking about how scared of the hospital I was, my cousin said, "When I had knee surgery, and I'm not comparing knee surgery to brain surgery, but this was my experience in the hospital...")

- In that same vein, please refrain from asking a Chiarian going into surgery, "Are you scared?"  Really?  Just think before that comes out of your mouth.  Would YOU be scared if you were having brain surgery?  I'll answer that.  Yes.  You would be.  So don't make the Chiarian run through how scared they are unless they want to.

- The words I've heard most post-surgery have been "Don't overdo it!"  I'm going to make some friends mad at me because they've told me this, but I just can't stand that advice/command.  It makes me want to scream.  Firstly, you don't know how my body is feeling, you don't know what I can and can't do.  Someone who's had this surgery is cleared to drive 7 days after surgery.  Drive, people!  Operate a large vehicle!  Secondly, give me some credit.  I know how I am feeling, and if I need to back off, I will back off.  I got a lot of grief for going biking.  People are truly shocked with the activities I'm doing so shortly after surgery.  And I understand that.  It's so amazing what I went through and how quickly I got out of the hospital and bounced back (sort of).  But do not tell me what is and isn't a good idea.  Again, it's demeaning.  You're telling me that you're more of an expert on what I can and can't do than I am.  You're not giving me enough credit.  (That being said, my husband keeps a close eye on me, and he is the only one that I let tell me, "I don't think that's a good idea."  He's been with me through the whole process, and knows where I've been and how I'm feeling.)


Most Chiarians have spent years in pain and know how to live around it.  A lot of times I'd find myself saying, "I'll be in pain here on the couch, or I'll be in pain our at Happy Hour.  I think I'll choose Happy Hour."  (I don't go for the drinks, I go for the $3 pork tacos.)  Not after surgery, but before.  If you haven't lived with chronic pain I don't believe you can even begin to understand the daily struggle that it brings.  I used to get asked a lot, "How do you do it?"  My answer is what choice do I have?  I don't.  I can choose to hole up in my bed and never get up like I feel like doing a lot, or I can continue to live somewhat of a life and try to enjoy it as best I can.

Whew, this is a long post.  The bottom line is this - if you are a loved one of Chiarian, keep loving them. Try your best to be patient and forgiving.  Offer a listening ear when they need one, and arms for holding when they need it.  If you aren't sure what they want or need, ask them!  Ask them how you can best support and comfort them.  Chiarians - don't ever take those loved ones for granted, have patience when they don't understand your pain.  They're doing the best they can, and are loving you the way they know how.

I have been so very blessed with the amount of love and support I have received through surgery.  I am so thankful that once the surgery was over people didn't forget about me.  I still need support, I have such a long way to go.

(Time for my winning Oscar speech)  Thank you to my parents for coming making the journey to Milwaukee and going to all the appointments with me.  And then another journey to Milwaukee for the surgery.  Then another trip to Milwaukee is coming for my 7 week check up.  Thank you to my mom for calling me and checking up on me, and calling me a brat.  Thank you friends for the cards and packages I've received - it makes me feel so special!  Thank you Rachele for being so flexible and not pressuring me to come back to work until I'm ready.  Most of all, thank you Jeffrey.  My husband sacrificed so much for me, not just taking time off for the surgery and aftercare, but before that.  He was my biggest listening ear, and was always ready to hug me when I needed it.  It makes me think of the vows we spoke 6 years ago - in sickness and in health.

If you have read this entire post, you deserve a pat on the back.  Or at least a long distance high five.  It was a big one.

All the aches and pains

Several people have asked me what my particular symptoms were/are, which I never really addressed.  Here's a rough timeline:

Moved here to WA state 6 years ago, very shortly thereafter was in an extremely minor car accident.  From then on, I had headaches more and more frequently until they were every day, all day.  The pain waxed and waned but it was always there.  Every single doctor I saw asked where the headaches was, and I could never answer them.  It's my whole head, my neck, everything.

2 years ago my leg pain began.  It was super weird, I was driving to work and I remember rubbing my calves thinking, "what did I do at the gym yesterday...?"  I even complained about it that day to my boss.  From then on, my legs hurt.  They hurt when I was active, and hurt being still.  The pain was so strange, no pattern whatsoever.  It was mostly from my knee down, but I also had lower back pain.  It was so achey, no matter what I did they just hurt.


I was also always tired, no matter how much sleep I would get.  I was run down.  Everything felt like it was a huge effort, and my muscles were tired after I went up just one flight of stairs.  I continued working out, but not nearly to the capacity that I used to.  I also had a terrible time remembering things, and was mentally very foggy.  (I am still that way, hoping it has to do with the painkillers I'm on!)  It was the weirdest feeling - I had zero recollection of doing things sometimes.  My boss would ask me if I called so and so or did something, and I would have no idea.  It was scary.  I felt like I was a liar, but I truly could not remember.  I still have that problem, and hoping it will go away.

So that's it in a nutshell.  There are other small things that may or may not have been related to CM.  Time will tell, I guess!

Friends

I love my friends, as I suppose everyone should.  But not everyone has the sense of humor I do.  Here's a note I got with some flowers that were sent to me:

Amy,


Sorry the flowers are a little late.  We wanted to take a few days and make sure you were going to pull through before we splurged on a gift...


jk jk  We love you so much and hope that you are starting to feel better :) Hopefully we will see you soon!
Love D & Christi


If that isn't the most wonderful card, I don't know what is.  Thank you, friends, for making me laugh.

I drove today.

I drove the car today, which is a first since I had the surgery.  The incision caused such stiffness in my neck that for a long time I was much to scared to drive (even though the aftercare instructions say I can).  But my neck has loosened up a great deal, I'd say I'm 70% toward my regular range of motion.

Other than driving, nothing exciting today.  Took Dozer for a walk, but I (ok, we both) got tired pretty quickly.  I helped Jeff wash the cars (I manned the hose) so I could enjoy the sun, my favorite thing.

Tomorrow I'm so excited to be seeing two friends that I haven't seen much since I returned.  I haven't really seen anyone for that long since I had surgery, so it will be fun.  For all these weeks it's pretty much just been Jeff and me, with very few others mixed in.  I told Jeff that we haven't spent this much time together since we were first married, and I'm glad to know we still get along.  Or he hides that I drive him crazy very well.  One of the two.

Places to go

I mentioned yesterday to Jeff that I'd like to go to Pike Place Market again.  I've been several times with people from out of town, but I hadn't been in the summer (that I remembered).  Yesterday I made the mistake of being much too lax in my sitting up/laying down.  Jeff went out for the evening and my headache got worse and worse.  I've never had a migraine, but I have had what is called a 'spinal headache' when I had a spinal tap.  This was that.  And the worse thing is that meds do nothing - the spinal fluid is just angrily sloshing around in my head.  The only thing to do is lay down.

I had been laying down since 8:20pm and was still awake and in a lot of pain when Jeff got home.  I took more medication, it had been 7 hours since I took the last set, and about an hour later I finally felt relief.  It was about 2am.  

So anyway, we went to Pike Place as planned this morning, but very carefully!

Our attempt to get a pic together with the sign

Duh, gotta have a Starbucks!  An Arnold Palmer, refreshing!

Time heals

My incision is healing well I think.  My neck is still somewhat stiff, although I can turn my head way more than I could last week.

Yesterday's victory was my 40 minute walk, today's victory: a trip to Alki Beach for some biking!  Jeff and I both love to take our bikes (or our tandem bike) down there, ride around, then eat some fish tacos at Duke's.

It was a long day, and I'm exhausted.  But not a super painful exhausted, which is good.  It was wonderful to get outside and ride around (I have an amazing beach cruiser bike, it's heavenly to ride), enjoy the sun, enjoy being with Jeff.

A huge concern for me about this whole surgery deal is the length of inactivity.  I'm a pretty devout gym goer and have a hard time being still, so these past 2 weeks have been difficult for that as well as other reasons.

Although as I said before, I haven't noticed huge changes as far as my symptoms, I have noticed that the constant pain between my shoulder blades is gone.  That could be for one of 2 reasons: 1.) the pain was caused by my Chiari Malformation which is now corrected or 2.) the pain was caused by sitting at the computer for long hours, which I often do at work.  And since I'm not working right now, I don't spend much time at the computer.  I suppose when I go back to work I'll see what the real reason is for the relief in my between-the-blade pain.

Me and Jeff at the start of our bike ride - the Space Needle is a tiny bit to the left of us.

My sweetie and my sweet ride

Another big day!

Well, it seems that my days are somewhat returning to normal.  A little.  I went on a 40 minute walk with Dozer, there were lots of pee break stops (for him, not for me) and it was definitely a leisurely pace.  But still, my first real walk since surgery.  I'm planning on starting to swim with a friend next week.

The worst part about this whole thing is this - I don't know if or when I will start to really feel the effects of the surgery.  Since there are (as Dr. Heffez put it) "grooves" in my brainstem, I assume that may take a while to correct itself.  I think...?  I don't know.

So now that I am somewhat back to an active day, here's a few things that I found helpful during my 2 1/2 week non-active recovery:

• narcotics (I was on some serious pain meds, and I was thankful for that!)
• TV, particularly On Demand - I'm not a movie watcher, so TV was my best friend.  I was able to keep track of how long I had been upright and when I needed to lie down really easily  (I also learned a lot, like we know more about the moon than we do the ocean.  Thanks NatGeo.)
• the laptop - at least I could feel a little bit connected to the real world
• my phone - texting was a good way to keep in touch without having to be 'with it' enough to talk on the phone
• my puzzle book - my brother gave me this awesome little puzzle book.  the puzzles were perfectly not easy and not hard.  it was nice when i was lying down to make the time pass
• a caregiver - specifically my husband.  There were times I needed help up the stairs or help getting up, he was there.  It made life so much easier if I needed something he would get it for me.  He also kept track of my medication and when I needed to lie down.  And he made sure I didn't do too much.  He was/is my most precious thing post-surgery.

Tomorrow's plans: another walk with Dozer, more frisbee with Georgia (she's starting to catch it sometimes which is nice), and perhaps trying to tackle a few things on my 'to do' list, specifically continuing the organization of my closet...  

Thank you for all the well wishes and the support.  It is truly helpful to know that I am supported, and it's nice to have emails in my inbox!

Whew, big day.

All of the lying down is really taking its toll on my body.  My back aches, and my legs are killing me.  I am trying to be hopeful that the leg pain is being caused by all the laying around I'm doing.  Today I woke up with massive body pain, but started the day with a little pruning anyway.  There's this crazy tree that has gone totally wild the past couple months.  I had no idea, especially since it's up the front walk and we never use that entrance.  I opened the front door this morning and it was a serious jungle.  So, I attacked it.  Well, attacked it as much as I can attack at this point.

Jeff is still off which is really great.  He goes back to work next week, and I will surely be lonely when he does.  I (and the dogs) have gotten spoiled having him home so much.  He takes very good care of me - makes sure I have my medication, makes sure I lay down enough, does the dishes and chores around the house, very helpful.  I know he is just as hopeful as I am that this surgery was the right choice.

No exciting photos or exciting news today.  I did more today than I have since I got home from surgery (which in comparison to what I normally do isn't much), so I'm sure this evening I'll take it easy and watch some more cake shows on TV.  Is it just me, or is there a massive amount of shows about cupcakes and cakes?

Now we wait...

It's been two weeks since my surgery, and I'm unsure if I am feeling 'normal' for this stage of recovery.  I assume so.  My neck is stiff and it's hard to turn my head.  I am still diligently following the 2 hours up/half hour down.  I'm still fairly consistent with taking my pain killer and muscle relaxer, but I still get nasty headaches from the back of my head/neck that spiderweb forward.  I think that is normal since, oh, ya know...  It was opened up two weeks ago.  A fairly traumatic experience I believe.

I expected the headaches/sore neck.  What I did not expect was how sore my body would get.  I have been laying down so much that the lower portion of my body is extremely sore.  At least I'm crossing my fingers the pain is caused by laying down so much.  I can't even imagine the idea that this surgery did not solve my leg pain problem.

But as I mentioned previously, Dr. Heffez told us that the arteries that we saw in the MRI have actually left grooves in my brainstem - I would assume that would take a while to right itself.  I was having coffee with a friend this morning and she said it well - I need to be patient,  but all I've been is patient through all the pain.  Just a little more is what I kept telling myself.  It's like when you're getting a kid to eat his vegetables, you say "One more bite...  Now one more bite.  One more, for real..."

So I wait.

My thoughts on what to bring to the hospital...

The scariest part of this surgery for me was the hospital.  I've never had surgery in a hospital, let alone spent any time there.  I scoured the internet looking for things I should bring with me.  And I brought them all - I packed my biggest suitcase for this trip because I just had no idea what I needed.  Well, I ended up needing next to nothing.

I think I thought I would be much more mobile than I was.  For over 48 hours I was flat on my back, no pillow, hooked up to all kinds of machines.  I didn't hardly move my hands.  So no need for magazines, crafts, or a pillow.  A dear friend sent me a bunch of little crafts to do and I was really excited to do them.  But like I said, I didn't move my hands let alone sit up enough to see anything but the ceiling.

No DVDs, no TV watching.  Literally, I did basically nothing.  Here is a list of things I would bring to the hospital if I knew then what I know now:

• the clothes that I wear to the hospital
• photo ID
• face wipes (I had Oil of Olay daily facials, they were a must)
• toothbrush and toothpaste
• My family

And that's it.  Once I was mobile enough to get the catheter out and get dressed, I was released.  My mom and dad did take turns reading me from the book I was reading, but I didn't stay awake long enough to get very far.  So that is my advice to anyone going in for decompression surgery, at least from my experience.

On another note, I kept a few of the staples from my incision - here's a photo of them compared to a regular staple from an office stapler.  I asked my bestie Erin if it was weird to keep the staples and she said yes but do it anyway.  So I did. 

They are M shaped because the tool used to removed them crimped them in the middle so they could come out.  There were 18 staples in all.  It was a lot, but I was glad there was so many so my incision didn't have a chance to open up at all.  The removal was very uncomfortable - it was like a pinch and a prick at the same time.  My incision is healing fine now, but it's kind of gross.  I mean, it's not infected or anything, it's just a bunch of skin and it's weird.

The Aftermath

First I heard beeping, and with a huge effort I opened my eyes.  Everything was blurry, but there were two nurses talking to me, telling me I was headed to ICU.  One of those nurses was Katie, the best ICU nurse ever.  I got to ICU (I'm flat on my back, no pillow) and was a bit more with it.  I told Katie (she was to be my nurse for the next 12 hours) that I wanted to play a joke on Jeff and when he came in, say "who are you?"  I thought it was hilarious.  She laughed, although maybe it was a pity laugh.

My family came in all together, my parents, Jeff, and my younger brother.  I didn't ask Jeff who he was because I was already saying hello to everyone, but Katie told them my plan so at least they knew I was in somewhat good spirits.

My family took turns staying with me so that I was never alone.  My throat was killing me (you were right, Heidi!) so my dad gave me ice chips which really helped.  I was hooked up to an IV with pain meds, and my other arm was hooked up as well.  Above me I could see the monitor with all my vitals on it, it kept beeping because my heart rate is so low.

My stay at the hospital is kind of a blur.  I was extremely well cared for in ICU, they made sure I always had my meds and was as comfortable as possible.  It was miserable, as time went on I got more and more sore since I was flat on my back.  Not only did my head hurt since it had been cut open, but my body ached from the position I was in.  My eyes were always heavy, but I didn't sleep as much as I thought I would.

After about 48 hours I was moved to a regular room.  I was still flat on my back, but at least it was more comfortable for my family.  Jeff had brought the DVD player, and I had magazines and various other little things to keep me occupied.  I never touched any of them.  Laying there made it impossible to do anything but stare at the ceiling or sleep.  

The nurses that cared for me now had many more patients, and my family had to go and tell them when I needed something.  At some point Dr. Heffez came to see me and I asked him something like, "How did it look in there?"  And he actually laughed and replied, "Looks like it needed to be fixed."  Those words were like music to my ears, it was so reassuring to hear that!  

Thursday morning the PA for Dr. Heffez came to see me.  She asked how I was, and asked how I felt about getting released.  Duh.  I was ecstatic, I wanted out.  I wanted into my own clothes, out of the cath, out of that stupid bed.  I desperately wanted out.  That afternoon I was released and my family and I headed to the Residence Inn where we would be staying until the following Tuesday when I was to see Dr. Heffez and get my staples out.

The further I get from that time, the more I forget.  I remember it was miserable.  I remember my family whispering because they didn't want to wake me, only for me to say quite loudly, "I'm awake."  It's all kind of a blur...  Although I felt totally with it while I was there, now that I look back on it, it feels foggy.

Here's an updated photo of the zipper.  That was right after my staples were removed and I was headed home to WA.  kind of gross, it actually feels more gross than when the staples were in.  When my hair is normal, you can only see a bit of the scar sticking out the bottom.  

Thank you for all of the support.  My recovery is far from over, I now spend my days lying down flat for most of the day.  There is spinal fluid that has leaked from the spinal cord and causes a great deal of pain if I am upright too long (this is normal, the spinal fluid needs to be re-absorbed which takes weeks).  

If you've read this whole blog, you really love me.  This was a long one.  Soon I'll blog exactly what the surgery was and what Dr. Heffez saw in there.  But for now, it's back to the couch to stare at the ceiling.  

Home

Another short post - I have a lot of recovering to do which involves me lying flat.  Not easy to do much else but sleep when lying completely flat!  The general equation is 2 hours upright, 1/2 hour lying down.  But for now, it's as much lying down as possible!

Jeff and I made it home yesterday after a long day of traveling.  We said farewell to my mom and dad in Milwaukee, made a pit stop in Minneapolis, then to Seattle where my friend with the biggest heart EVER, Erin, picked us up.

I am so thankful for all of the support - thank you for the care packages, the kind words, and prayers.  I will continue my story, picking up post-op, as soon as I can.  For now, I'm laying low and letting my husband take care of me.

Pre-surgery: Monday morning

So I'll try to start from the beginning of my surgery experience and tell you what I remember.

Jeff and I arrived at the hospital at 5:45am, my surgery scheduled for 7:30am.  I hadn't slept too much the night before since I was so nervous.  We checked in and I had to spell my name probably 40 times to everyone I talked to.  After registering we went up to 'Day Surgery,' now it was getting real.  I had to change into the ass-less gown and was issued these prison socks.  (They were tan and tube shaped, a one size fits all deal.)  The first nurse that brought me into the room left, Jeff and I waited.  Heidi, you're right.  we waited... and waited....

Next same in a different nurse and she started hooking up electrodes to my feet (oh, and I had to wear compression stockings, which are actually fairly comfortable) and my hands.  I asked if I needed anyone my head and she said (in not so many words) that they'll put some in when I'm sleeping.  She wrote on my head too, I think.  While she was working away, a different nurse came in, then a different one.  We were visited by Dr. Heffez's PA, I think his name was Nick.  He may have been barely over 20 years old.  It was very Doogie Howser. 

Nick explained a little of what I was to expect after I woke up.  That was when I learned I would be laying flat on my back for at least 36-48 hours.  UGH.  I had no idea about that fact, as well as a number of other things I went through during my hospital stay.

The anesthesiologist came to see me, I sure liked that guy.  Dr. Chase was his name, and he was not what my nurse friend Heidi predicted.  (Heidi, that was like the -only- thing you didn't predict!)  Dr. Chase was young, he has two kids, one a girl of 3 years old.  He was so super nice, talked to me, and asked if I had any questions.  He was very receptive when I told him I was concerned about having the tube thing down my throat because of my fragile mouth and gums.  He was so super nice, and I told him that. I think he liked me, I was a super charming patient. 

I saw my parents and my brother for a quick minute, said goodbye to them.  Dr. Chase already put in an IV tube, and told me he was going to inject something that would make me feel like I had had a couple margaritas.  As soon as he did that, I said goodbye to Jeff and I remember says, 'it's working.'  That's the last I remember.

Sleep, Sun, and Sundaes

Still don't have the energy or ability to sit up long enough to delve into the hospital experience from my perspective, so another short post.

from the looks of this, we're on vacay.  Not so, friends.

I spend my time here at the hotel laying down flat on my back, playing gin, doing a little sitting in the sun.  I sat in the sun today, but started feeling really rotten so i came in to rest.  I alternate between icing my neck/head and laying down flat.  it's not very fun, but at least there's nothing to do besides rest.  if i were home i think i'd be wanting to -do- things.

We went to Kopp's for the second time tonight, more to come on that experience.  SO good.

there is a fine lie between not going crazy but resting enough, and doing too much.  I haven't really figured out how I am 'supposed' to feel yet, Tuesday we go back to see Dr. Heffez to get the staples out (all 18 of them!) and I suppose he'll have a few more answers for me.


Here's an updated pic of my stitches - they are floating away from the skin now since the swelling has gone down somewhat.  Although I do find after I've been laying down the swelling increases until I ice it.

I'm still in pain, I have a hard time turning my head and an especially hard time bending down or going from up to down/down to up quickly.  There is spinal fluid that has leaked (this is normal anytime you work through/with the spinal cord) which causes very intense bouts of pain that correlate with my heartbeat.  Not all the time, but for a few seconds at a time.  When that happens it's debilitating.  It doesn't happen too often, though.

More soon, I think once I get home I'll be able to start documenting and sharing my hospital experience.  I should start writing it down, though, because the farther away I am from it the fuzzier it gets.

Real quick-like

Hi everyone!  I can't sit upright for very long, so this is a short one.  First, THANK YOU for all the support.  It's been rough, the hospital stay was very rough, but it gets better every day.

here's a list of a few ideas i had to tell people if they ask about the huge row of staples:

• they've implanted government secrets into my brain, a place Russia would never look
• i am now a robot
• they took out some memories and hid them in someone else's brain (FRINGE anyone?)
• turned my back to Zorro (never ever turn your back on Zorro)

thanks again for all the well wishes.  this will be a long road to recovery, but it absolutely helps to have all your support.

my blogging husband.  He's such a trooper!

releeeeease meeee...

remember that awesome line from independence day?  when the alien plasters the scientist up against the glass wall and speaks through him because he wants out of the lab?  yeah.  amy totally did that to one of the nurses yesterday and it seems to have worked.  she's free of the confines of hospital, the smell of a sterile environment, an open-backed gown, a weird liquid diet, and various tubes.

yesterday around noon one of the surgeon assistants came in the room to talk to amy about how she was feeling.  amy was pretty upbeat, and i think the assistant caught on quick.  after a few minutes of conversation, the assistant determined that amy was fit for discharge.  a few of the nurses gathered the necessary paperwork while amy was given the after care instructions.  by 3PM we were on our way down the hallway, out of the hospital, and into the beautiful milwaukee sun.

we decided to take the scenic route back to the hotel, following lake shore drive right along the coast of lake michigan.  if you've never experienced the wealth of coastal lake michigan homes, it's pretty awe-inspiring.  the homes are giant;  large gates, brick or stone sided, beautifully maintained yards with huge fountains.  i had to ask myself where these people had gotten their wealth.  medical community?  old brewery money?  by now we were roughly halfway home, and the excitement of being out of the hospital and not laying down constantly caught up with amy.  not to mention the lousy road conditions out here.  every road seems to need repair.  at any rate, amy started getting a headache, so, when we returned i helped her lay down for a nap (plus the meds).

after a few hours of rest we decided to have dinner.  while dad and i picked up the food, amy was able to take a shower.  mom helped wash her hair (i'm sure all of the lady readers understand why this is so important, given it had been a few days).  after dinner amy took turns between lying flat, sitting up, and walking around a little bit.  we even took a few photos to document her incision.  i'm not sure if the photo really does it justice, but it is quite an impressive piece of work that dr. heffez pulled off.

probably pretty obvious why the patients that have gone through the procedure call themselves, "zipper heads", eh?

amy ended up laying down for the night around 9PM.  throughout the night i would hear her stir, and would check to see how she was doing.  her pain comes and goes, so we medicate accordingly.  amy is anxious to get up and do the things she normally does.  today she woke up, ate breakfast, and took the time to shave her legs.  then, we went out and sat by the pool at the hotel for about an hour.  but of course, with that activity, comes headaches.  i think it's a fine balance of walking, sitting, standing, or lying down.  i imagine that the headaches will be less frequent as her body gets used to the idea of recovery and not lying down for hours on end.

right now she is lying next to me on the bed, asleep.  over the next couple of days we'll monitor her recovery, and try to make a plan for the most comfortable flight home possible.

times are changin'

you guessed it, another jeff blog on amy's behalf.


first, don't get used to reading my blogs online.  this is a lot of work, and i'm surprised people voluntarily sign up for it.  second, the post was delayed this morning because we've actually had quite a bit of activity.  so, to begin.

yesterday was a step in the right direction, as it relates to amy's recovery.  in the early afternoon the nursing staff began elevating her to about 40 degrees (by 4PM or so).  after that, they were able to remove a couple of the IV lines that she was using, and have tapered back on some medications.  the greatest change of yesterday involved wheeling amy out of the ICU, and onto the 7th floor.  her new room is more private, with a real closing wood door, a large armchair that reclines, a private bathroom, sink, and TV.  because the room is on the 7th floor, it has a beautiful view of lake michigan and the east side of milwaukee (hopefully see attached photo...we're trying to get that included).

amy spent the majority of the early evening resting in her bed, drifting in and out of sleep.  the big news came when amy's new nurse, donna, helped her get to her feet and sit in a chair for the first time since the operation.  amy seemed to stand up pretty easily.  donna told amy that she only wanted her to sit for about 10 minutes, then it was back to the bed.  amy was able to stand up on her own, then sat down with ease.


for the first time amy was able to eat "real food" post surgery.  amy ate a fruit plate and a blueberry muffin.  it was great to see her actually sit up and eat.  she was able to watch TV briefly (seinfeld of course), and ultimately fell asleep once the sun set and her room was dark.  i sat next to her in the armchair playing my video games and occupying myself with movies until she was asleep.  once she looked like she was comfortable, i closed my eyes and drifted off too.


throughout the night we both woke from time to time, amy sometimes asking for pain meds or another pillow.  around 7:15AM we woke to the sound of the phone ringing.  i answered it, and spoke with someone from the food service.  i ordered amy's breakfast and chatted with her for a few minutes.


while we were waiting for her food, stephanie with physical therapy stepped into the room and spoke with amy.  stephanie helped amy get into the armchair.  stephanie set a goal of getting amy to walk out of the room and into the nursing area.  amy stood up, paused for a moment, and told stephanie that she felt light-headed (probably a combination of lying down for hours and no food in her belly).  amy took a break, walked a bit more, then returned to her bed.  it was fantastic.  i helped amy finish her breakfast, then she brushed her teeth (another notable moment).


around 9AM amy was met by an occupational therapist, betty.  betty went through a series of questions with her, then helped her with some basic hygiene (washed her face, etc.).  while amy was meeting with betty, i stepped out to get some breakfast of my own.  i went outside and sat in the grass on the front lawn of the hospital.  it was (and still is) beautiful outside.  probably 75 degrees out, low humidity, some cloud cover.  i try not to tell amy these things...she doesn't need to hear how nice it is when she's confined to a air-conditioned hospital room.


when i returned to the room amy was ready to make some more significant changes.  by now her parents had returned (they brought me breakfast).  amy's new nurse (laurie) removed her IV and her catheter.  that may have been amy's favorite event of the morning.  then, her mom helped her with changing out of the lousy hospital gown and into some more familiar clothing.


as i'm writing this amy is taking another break, lying down.  she just opened a package from a close family friend (thanks barb), revealing an oven mitt fashioned after the great state of michigan.  

today may be a bit more boring for amy, as she seems to be a bit more awake and less medicated.  the last couple of days she's been very drowsy from meds, and has spent a lot of time in and out of sleep.  maybe today she'll spend some time just watching the DVD's that she brought.  

more to come...

a change in elevation

yet another entry on amy's behalf...

it is somewhat ironic that the people from washington, land of mountains, are excited about a change in elevation.  especially considering that we are in wisconsin.  i'm not sure people in wisconsin have any idea what a mountain looks like.  although, this is a different kind of elevation.  lately the discussion surrounding amy's recovery has turned to how soon we can begin elevating her from 180 degrees to 90 degrees.

as of right now, she's been lying totally flat since the procedure.  that was some time around noon on monday.  that means at noon today, she will have been flat on her back for 48 hours.  you can probably imagine how miserable that is.  the nursing staff plans to begin elevating her about 10 degrees every hour until she is sitting up.  i'm not sure when that will begin, though.

otherwise, amy has been sleeping a little more consistently.  her pain is primarily in her head, between where the incision was made, and general headaches.  she's mentioned that her back, shoulders and torso are sore.  hopefully that will go away quickly once she is able to shift her body weight and sit up.  the nurses tell us that amy is doing really well, given the fact that she has been able to monitor and control her nausea.  amy may get angry that i mention it, but she hasn't vomited yet...which apparently is pretty remarkable.  she's drinking water and juice when she wants, but needs help doing so.

mom spent a lot of time with amy yesterday while us boys took a break and went to a brewers baseball game.  she mentioned that amy laid quietly while she read to her.  mom said that at one point she thought amy was asleep because she had closed her eyes and was breathing so quietly.  then, amy broke the silence by saying, "this sucks".  those are probably the two most insightful words that have been spoken all week.

dad ended up staying with amy all night last night.  when we came in this morning to relieve him he looked tired.  i'm guessing he didn't get a whole lot of sleep in these lousy chairs, either.  ben leaves this afternoon to head back to work.  it's been good having him here.  i think amy really likes having ben around, he lifts her spirits with their inside jokes.

i suppose that's about all the news i can muster right now...not a whole lot of change.  the nursing staff continues to rotate and take care of amy, although i still think katie is my favorite nurse for amy.  she seems to be the most in tune with what amy needs.

thanks again for all the kind support.