Two years have passed...

I really can't believe it's been two years since my decompression surgery...  So much has happened, I will summarize:

The biggest change: My husband and I have moved to southern California.  I've also started my own business, Chowhound Photography.  My husband has started a new job, everything in life has changed.  Everything.

I am so happy to say that I am feeling better (Finally!).  My leg pain is almost non-existent.  I still get headaches, but so much less than even a year ago.  I truly believe the biggest thing that has helped me is the move to CA.  The pressure changes and the atmosphere in Washington was so difficult for me - so many changes in the weather, it was always damp and chilly.  Here, Encinitas, is so much more consistent and SUNNY. I was made to live in the sun.  If you know me, you know I will do anything to be in the sun.  And it helps that I get a fabulous tan.  I'm not bragging, it's true.

No words can accurately express how I'm feeling.  I have mixed emotions.  I remember the difficult journey that I've been through these past 7 1/2 years, and I know there are more obstacles ahead.  I know that I will never be pain-free.  I know that now.  But I finally feel like I'm starting to get myself back.  For so long I had so little control over my body - pain would dictate everything.  It would dictate my mood, what I could do that day, etc.  Pain would hang on me, wrapped me up like vines.  I finally feel like I'm wriggling free and controlling my body.

So how did I 'celebrate' my surgery anniversary?

I ran.  No music, only the sound of my feet, Georgia's feet, my breathing.

I went to the beach.  I watched the pelicans, felt the sun, listened to the waves.

I visited with friends, walked, relaxed.*

*I did start the day with a frustrating conversation regarding my camera that is being repaired, but that was the only speedbump.

I don't really know what else to say.  I am moving forward in my life, I am surrounded by an amazing support network, I'm working toward a career that I absolutely love.  It's good.  I still struggle.  It's still hard.  I still hurt.  But I feel myself moving forward.

My lady friends

Friends enjoying an evening at the beach

And one year has passed.

Day before yesterday was the one year anniversary of my decompression surgery.  I wanted to blog, but I didn't.  It just felt like another day.  I wish I could say I've had miraculous progress since I posted last, but I haven't.

Now, more than ever before, I realize how much the weather affects me.  Not only to my symptoms get worse when the barometer changes, but I live for sunshine.  I was not built to live in the Pacific Northwest, not even close.  The temperature hasn't climbed above 80 at all where I live, and days in the 70s are few and far between.  I'm from Michigan, the land of sweltering heat and freezing cold winters.  I find Washington's weather to be so apathetic.  Knowing and recognizing how much I love summer, and love sunshine, has helped on the days I feel like punching everyone and everything in the face.  I realize that the sun isn't shining, and know that part of my frustration lies in that fact.

It's hard to believe one year ago I was still in intensive care furiously pushing my pain med button.  It has been such an uphill battle, and continues to be.  I still struggle with a lot of symptoms.  But I have to believe having the surgery was the right choice.  Had I not, my brainstem would still be being crushed and deformed, causing who knows how many other symptoms.

So I'll keep on keeping on, trying to function as best as I can every day.  I am thankful for the pieces of sunshine I do get in life, literally and figuratively.

A good article

Here's an article a friend sent me - it's really worth reading.

Thanks for the encouraging comments, friends.  It's nice to know people still read this!

Late night post - a shortie

I will post just a bit, it's late and I've had a long day.

Sometimes I go to the gym and I feel this terrible bubbling of envy.  I see people sweating buckets, working their tails off.  I see people who can do back-to-back classes.  I see women wearing these perfect workout outfits, and looking amazing doing so.

I think that's my biggest frustration - I am not able to exercise how I want to, and it frustrates me.  I suppose frustrate doesn't quite capture it.  It pisses me off.  It makes me sad.  It makes me discouraged.  I want to be that person sweating it out, running, pushing my body to make it better.  But it seems many days all I can do is make my body get up and out of bed.

It is coming up on one year since surgery.  I can't even believe it.  It seems so long ago, yet so close.  I refuse to believe I went through such a traumatic event and will not feel better.  It has to get better.  It HAS to.

New research

I have been searching for more information these past few weeks. Last night my husband and I talked about the possibility of me having a second surgery... There is no reason for me to thnk I need another surgery except for the fact I am not better. I have found no relief so far, and to say that is frustrating is an under statement.

I read a lot of chiari blogs, but most are outdated, last posts being 2009. This spring has been hard, the pressure changes really make my aches and pains worse.

What now? I do not know. Bt I have promised myself I will blog more, if not to keep everyone updated than to at least document for my own memory.

Slow times

I started this blog last June.  In a way, it seems like a lifetime ago.  And I suppose in a way it is.  Since then I have had brain surgery.  Brain surgery!  Sometimes I have to say it outloud, and it still feels surreal.

I wish I could tell you I'm cured.  I wish I could say, "Man, I can't believe I used to feel so terrible!"  But I can't say that.  I have to believe I went through surgery for a reason, there is no way I went through such an ordeal for nothing.  But I have yet to feel any better.


The miserable have no other medicine
But only hope.
~William Shakespeare, Measure for Measure

Wait... What...?

It's been a long time since I've posted.  Two months almost.  I've been having my ups and downs, which is to be expected I suppose.

I'm having a lot of memory trouble.  Not just like, "Oh, what did I come into the kitchen for?"  More like driving almost all the way home from work and trying desperately to remember if I unplugged the space heater...  Can't remember, so I drive all the way back to check (to discover that I indeed unplugged it).  It's hard to explain, it's like there's completely zero memory of something happening.  There are some things that totally don't stay in my mind, even if I did it just minutes ago.  It's frightening.  It's hard to work with that problem.  I don't know when I should be concerned.  It takes a lot of effort for me to recall things, just every day things.  Like what I'm wearing without looking down to see.  Like if I gave the dogs their fishoil with their breakfast.  All these little things that I suppose are fairly insignificant, but add up to be a huge part of my day.

I know everyone has forgetful moments.  I get that.  But I don't feel like I'm 'sharp.'  Honestly, I feel kind of stupid.  I feel spacey and like I'm always one step behind everyone else.  I've never felt stupid before, but when I really think about it, that's what I'm feeling.  Will this go away?  Am I permanently memory-challenged?

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.