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?