Tuesday, August 31, 2010

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.

Monday, August 30, 2010


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.

Sunday, August 29, 2010

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.

Wednesday, August 25, 2010


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.

Tuesday, August 24, 2010


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.

Sunday, August 22, 2010

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!

Saturday, August 21, 2010

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.

Thursday, August 19, 2010

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.

Wednesday, August 18, 2010

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!

Tuesday, August 17, 2010


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:


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.

Monday, August 16, 2010

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.

Sunday, August 15, 2010

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!

Friday, August 13, 2010

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

Thursday, August 12, 2010

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!

Wednesday, August 11, 2010

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?

Monday, August 9, 2010

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.

Sunday, August 8, 2010

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.

Thursday, August 5, 2010

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.  

Wednesday, August 4, 2010


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.

Monday, August 2, 2010

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.

Sunday, August 1, 2010

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.