leaps & bounds

One year later and I have made leaps and bounds.  When I found out that I needed to have decompression surgery I crumbled.  I was a mess.  It took everything my friends and family had to push me, lead me, coax me forward. There were so many hours of phone calls with encouraging words. (my dads were the best - he was the strongest and most logical about it) There were emails of encouragements, facebook posts, suggestions from friends who had gone thru things similar.  Hours of reading peoples blogs of what to expect, seeking proof or hope that it would be OK.  Strangers shared their stories and I even had a few friends that knew about Chiari first hand.  It took that huge collage of people to hold me up and be brave enough to push forward.  Head up - you can do it.   and I DID!

For the sake of documenting where I am at today I will say that I feel as if I am healed. I have very little pain.  Headaches, chronic neck/shoulder pain and numbness - all but gone.  Victory.  I do have issues with my memory.  I used to remember everything, almost to a fault and now I have issues with short term memory as well as long term.  I am hoping it is something that will improve.  It bugs me, but probably bugs John more.  I am not consistent like I used to be.   Also, I think brain surgery brought the hypocondriac out in me.  It might really be the blood clot that actually started me down this path of worry.  I have been told by so many what a close call that was.  But, I was someone that went to the doctor once a year - now it seems (especially with me being on coumadin/warfarin) that I am at the doctor twice in a month. (or more) 

Besides all of that, this last year can be looked back on and documented as the year that made my family better, stronger, more thankful and more present.  I have to again thank John, Mia & Ryan for all of their love and support and thank all of my friends, near and far, that gave so much to help us through a tough time.  

We celebrated this last year with a trip to San Francisco.  We were planning this trip for 2010 when I found out that I had to have surgery. The trip was postponed and I am so glad we made it there.  On 11.11.11 (probably the ultimate date on the calendar of my lifetime)  we crossed the GoldenGate bridge at 11am, and then climbed this hill and took this photo at 11:11am on 11/11/11.  

11/11/11 at 11:11am - San Francisco 

left: starting our san francisco adverture
right:  the latest hair photo with my new locks.  my hair grew 6 inches this year and is now unruly in a braid.

I named him BOB.

My blood clot has been named.  He hangs out with me all day, so he deserved a name.  Thank you to my friends on the soccer field that insisted I didn't leave without naming him. (kind of like naming a hurricane)

So, with Bob came Lovenox shots in my belly to thin my blood.  You would think that is no big deal but, I was.  I do not have the ability to let my brain tell my hand to poke myself. (not with a big needle)  I can do finger pricks no problem.  At first it was probably funny to watch me try, but then it got stressful. Luckily John was there and took charge and did a fine job.  Nurse John - along with my neighbor Jen who is a nurse gave me all of my shots.  Twice a day for about 12 days.  (and those shots.. they are $51 EA.)  That hurts too!

Because I have to be on Coumadin (blood thinner) for at least 6 months I had to get a medical alert bracelet.  OK, i didn't HAVE to - but I had a persuasive doctor who told me why it was so important.  Advice taken.  It kind of blends in to the rest of them, but I have been told that a responder would check before treating me.

lucky once again

August 01st, I am cleared.  I am told I can go back to regularly scheduled programming (although still, take it easy)  We celebrated by going on a trip to the Sand Dunes.  I had been wanting to go there since the previous spring.  The last time we went Ryan was just a baby and I had to carry her thru all the sand.  

It was a great trip.  We got there on a thursday and instantly went for a hike in the sand.  I was hoping to pace myself and make it to the top - but I barely made it up the first hill.  I had to sit and wait for John to go ahead and then come back to get me on the way down.  I was pretty bummed that I didn't have the stamina  that I thought I had.  

After our first hike we went to our campground.  We stayed at a KOA with friends who have an RV.  We slept in cabin number 2. (which was a tuff shed with 2 beds and a fan in it)  I slept on the little padded matress against the log frame.  In the morning I woke up and felt very out of whack.  We went back to the Sand Dunes and this time I had it much further.  Not to the top, but we still hiked steep hills of sand for about 2 hours before we stopped to take in the view and then turn around and go back down.  Then we hit a second hike with rocky terrain up to a waterfall.  I was beat and my side continued to hurt.  I thought the entire time that it was from sleeping on that little mattress against the log frame.

We got home from our trip and a week later I was back to see Gina (my physical therapist)  This time instead of working on my neck - I asked her to work on my lower ribs.  (left side)  She could tell I was out of whack (which i am sure in addition to my other ailments, I was)  I felt much better when I left, but it was short lived.  That night I couldn't sleep and felt like I couldn't breath. I couldn't lay flat or on my left side.  The next day I went back to PT but had to see a different person.  I told her that i was in serious pain.  Like on a scale of 1-10, I was a constant 6.  While she was working on me I had such pain that I was begging her to help me.  I was at a 9.  I couldn't open my eyes and felt like I was going to pass out.  When I left I remember being tingly and short of breath. She told me that it was skeletal and muscular and that if I went to the DRs office they would say I was having a heart attack, when I wasn't.   

Thru the day I sat in bed and i alternated heat and ice.  I have had friends that have had their backs go out and I figured this is what you had to do. Rest, be still - relax. Later that day I had places to go and things to do.  We had 2 soccer practices to get the girls to and a Back to School night for the parents to attend.  I tried to get thru the routine, but by about 6 I couldn't barely stand.  I had to lay down.  John got it all done and went up to the school.  We got take out - ate and then put the girls to bed.  I sat on my computer for a bit looking up anatomy so I could try to tell where I hurt and what it could be.  It was about 10PM when I stood up to get back in bed and I couldn't breath.  I had to bend sideways and lift my head to get a breath.  I texted John.  something like "please come help me"    (he was in the basement)

He came up - assessed.  I told him i HAD to go to the ER.  I had to see a DR. i couldn't breath.  We didn't even feel like we had time to call friends or parents.  John woke up the girls and I started walking to the car.  Down the hall, down 14 stairs and out to the garage took me about 10 minutes.  I must have looked like Tim Conway from the Carol Burnet Show, shuffling my way to the car while holding my back and trying to catch a breath.  We went to Skyridge.  For those of you in Denver - I highly recommend it.  I waited for about 5 minutes before I was getting checked in and had an IV started.  They were ON it.

Lots of tests, lots of waiting (they were busy with ambulances coming in)  My girls got picked up by Hooie, Johns mom and taken back to her house for the night.  We waited some more and around midnight they started talking about a blood clot.  They were waiting for a DR to sign off on a CT Scan.  My blood work came back as elevated and so I did get a scan.  Around 2 AM they came to tell me that I did in fact have a blood clot in my lung.  The doctor came in to explain that.  He told me that he was surprised I came in to the ER conscious.  I guess I didn't realize how serious it could have been.  I had told the nurses that I had called my midwife in May after being on BC pills for a month - complaining of pain in my calves.  She told me it was all in my head and to call her back if i saw streaking, of it my calves were warm to the touch or swollen red.  None of that ever happened, so i continued to tell myself that pain I felt was not a big deal.  Turns out that was bad advice and a disservice to me.  I had gone off of the BC pill at the end of July after telling my regular doctor about my leg pain. BUT, in August I had started another kind that had less hormones. (to continue regulating my cycle/mood since my surgery)

This was a long to do of a post.  All still very fresh in my head.  I feel like I was once again very lucky to have had it played out as it did.  A close call for sure.  I am really so lucky that nothing happened to me while I was in the middle of nowhere in all of that sand.  I can't imagine how you would even get help (cell phones don't work out there)  Also glad it stuck in my lung and not my heart or brain.  

i see the best sunrises while in the hospital.  Maybe those are the only sunrises I really see, since I am not a morning person.

SEPT 01.2010 - AUG 01.2011

I was diagnosed with Chiari Malformation in the late fall of 2008.  I met with Dr.Oro for the first time in January of 2009.  When I met with him he looked at my MRI and talked to us about what Chiari was and told us that I would some day need surgery. I was a candidate for surgery at the time, but there was nothing on my MRI that showed urgency.  We did enough research and decided quickly that the risks of surgery seemed too great with my current quality of life.  It is so easy to find the really scary Chiari stories online. (and I found them all)

>>FF>>   September 01, 2010 I went in for a check up with Dr. Oro.  I knew things had changed and I didn't feel so good. (lots of numbness, chronic pain in my neck/shoulders and fatigue.   John was out of town - and I expected him to tell me that things were different, but manageable still.  I was so wrong.  He took one quick look at my MRI and told me I was going to have surgery.  We all probably remember the story of the next couple agonizing months - with magical energy healings and the best support group of friends a girl could have.   

>>FF>>   August 01,2011  - 11 months later I am good.   I was back for a check up.  (un-easy to tell him I had fallen) and wondering what kind of follow-up that may have.  I took John with me not to jinx the day (since he was out of town when I got the surgery news last year)  My appointment couldn't have gone smoother.  My MRI looked great - he didn't even mention my syrnix (which means there was none, it's gone) 

In conclusion he told me to continue to take it easy - go at about 30%.. and then gradually work up to my goal in whatever I am doing. (30%?) I was going at 30% in February.  I told him of my yoga and tennis and even my 4am IKEA adventure (showing that I have my stamina back to go to opening day of Ikea.. that was a milestone)  Maybe then he realized that relaxing isn't really in my vocabulary.   

One more highlight - the nurse asked me if what medications I am on.  I was so proud to answer, NONE. (she even seemed like she didn't believe me as she made a big "X" in the box)   I never thought that 8 months post-op from brain surgery I would barely need an Advil once a week.  I was just as scared of what I would need post surgery to keep me afloat, as I was about the surgery.  I didn't want to live on prescriptions and have any addictions to pain meds/etc.  and yea, I did it!

I DID IT..  big sigh, huge smile.. tons of gratitude.. all is well.

on the left you can see my syrnix (the white mass) and in the image
on the right my spinal cord is open (the grey area is my spinal fluid flowing)

some photos along the way -and bottom left: dr. oro taking one last look at my scar.

The downside of brain surgery

I got a check up MRi on 07.11.11 and I go to Dr. Oro on AUG 1st for him to read it and tell me how I am doing. Even though I feel good, if he tells me all looks good it will be an extra piece of mind.

BUT, tonight while I was at the pool, I stood up from my chair (with Ryan in my arms) and I went to step backwards and walk around the table.  I tripped over a stupid curb and fell backwards landing HARD on the concrete (with an extra 45lbs on me from Ryan)  I landed right on my ass and hit my back/shoulder on the picnic table behind me.  Initially I didn't hurt (and I was glad I only had 5-6 people who witnessed the clumsy fall) BUT, as time passed and my anxiety about my fall set in I was a wreck.  I left the pool early and went home for some advil and rest.  I tried to take my mind off of my fall, so I went to sleep early.  I woke up about midnight and assessed.  I was tingly almost head to toe.  Even my lips seemed numb.  How much of this was stress? anxiety?  and how much damage did i actually do.  The pisser is - when Dr. Oro reads my MRI, will I be able to celebrate the good news (assuming that is what my MRI will show?)  or will a little of me think that i ruined the surgery with that fall..??  I jostled my brain, and just hope i didn't jostle that metal plate loose!

This is something that will always be in the back of my mind (no pun intended) and every time i fall or have an accident - my fears will resurface.  There is the downside of brain surgery.  (regardless of how great i feel daily)

8 months and counting . . .

"today was 8 months - post surgery. I have painting on a ladder, yoga, and tennis on my "TO DO" list this week - so I think I am doing OK."   as posted on my facebook.

I think that is a good summary of what is going on with me.  The upside is, I am able to be busy.  I am going going going, always.  Yoga and Tennis are for ME.  Then swim team, tennis and the pool for the girls.  And for others, I am doing lots of design/art/volunteering (my skills) work.  I have taken on enough to be busy.  I am not using my surgery as an excuse, because it seems I don't need to anymore   

I do tire at the end of the day.  I do still like to rest my head and neck, but I feel good getting on with things.

I got an MRI last week.  Going with my good date obsession, I made my appointment for 07.11.11.  I go on August 1st to see Dr. Oro.  (fingers crossed)

painting on a ladder, after my MRI, yoga in the park with (friend/yoga teacher) Nancy.

7 months brings legitimate pigtails

I am excited about this!  Finally I can put my hair up (in pigs anyway) and not have the reverse mohawk in the back.  I would have actually guessed that would have taken just a few months to regrow that long, but i was wrong.  It has been SEVEN MONTHS.

Now the time is really flying.  It is almost time for me to get another MRI to check my progress since my last MRI which was 6 months ago.  I will call soon and get my appointment and of course keep my blog posted.

Thinking about how I feel 7 months out - i will declare some victories and defeats.

First, a victory.  My anxiety is much less then it used to be.  I used to just think about a trigger (mainly anything involving my kids and them getting hurt) and I could whip myself into a frenzy.  Realistic or not.  It seems my mind might navigate those thoughts a little better. (no meds needed) I have had multiple prescriptions for anxiety that I take 1 or 2 and then give up on them. Mainly because the side effects are... anxiety.  SO, i am glad that has eased a bit.

A current defeat is my memory.  It is MUCH worse.  I feel (and am) scatterbrained. I don't feel like I connect like I used to.  The best way to describe it is feeling a bit ADHD. It sometimes takes me 3 or 4 times of reminding myself to do something to actually get it done.  Mentally draining because I can feel the lack of focus.  I also don't seem to be able to recall simple things - did i send that Thank You card?  deliver that birthday invite?  Did i get anything for Mothers Day? (i can't remember)  THAT is odd for me.  I used to be able to recall the smallest details.  I would say the memories affected are the ones from just before my surgery to present.

And, on the mend, my hormones. I was having more then the normal girlie mood swings since my surgery.  I am using birth control pills to even things out.  I think I am almost back on track.

One more note worthy item.  I started Adult beginner tennis last week.  Something I couldn't have done last summer.  I am no good, but I am having fun learning.  I am not sure if I am medically cleared for tennis, but so far no injuries.  I am going with the advice of Dr. Oro (pre-surgery)  If it dosen't feel good - stop doing it.  Usually I would do something and pay for it later.  But, so far beginner tennis hasn't gotten the best of me.

It is a reminder that while it has been 7 months, it has also only been 7 months.  And I guess brain surgery is a big - life changing ordeal.  And mostly for the better.  I still really enjoy (post surgery) sneezing and bending over to grab something or tie a shoe without getting a headrush. I still feel so fortunate with how everything has turned out.  Next post, life changes.

On to 8 months.....

beginner tennis, left  and little hair wisps in my pigtail, right.

6 months and or 26 weeks

May 16th = 6 months, but when you count the weeks it has been 26 - not 24.  Anyway you count it, happy 6 month anniversary to me.  I have been thinking for awhile that I wanted to celebrate someway with the girls and take them out of school to do something.  I wanted to go on a hike - but the mountains are still snowy.  The girls offered suggestions like - go to the bounce house, mini golf or bowling.  None of those screamed relaxing celebration to me.

Just as I was going to give up on making it a special day I decided that I would SEW!  Exactly what I haven't made time to do, like I had made time before my surgery.  I have a few projects ready to start on this morning and I can not wait for a productive day in front of pretty fabric and projects.

I have my (iced grande 7 pump) soy chai to my side and I am going to get to sewing.  I am going to pick up the girls at lunch time just to make it a little special, something different then my normal schedule.  We may end up and Indian Buffet - although I would be happy with Chipotles.  It will just be nice to have lunch with them.  Then back home for more sewing i hope - or a run to the fancy tiger for more fabric and maybe a new pattern.

 * see the the hair that sticks out in the back when i put my hair up *
annoying, but nothing to complain about.  I am lucky to have such long thick hair.

And so I can document where I am medically - I think i am back to about 90% of my regular energy/stamina level.  I am good on anything quick/short (a walk or a bike ride with the girls) I can walk up hills and I can walk fast.   If i have a busy - run everywhere kind of day when I don't get a break, I can really feel it that night or the next day.

I have very little numbness/tingling.  Pre-surgery I would go days without having sensation in my fingers, or hands, face or lower legs.  Now I might get a tingle (like my leg is asleep) and it lasts for 5 minutes.  It is also something that might happen once or twice a week.  I am also free to SNEEZE!  A sneeze before surgery would be one of the things that would make my face or hands fall asleep.  I used to try to catch them.. and I would be soo mad when I didnt and I had to have the cold sensation in my face for a day or two (just because of that sneeze)

My chronic neck pain is gone.  I used to constantly be rubbing my neck and shoulders (squeezing them) to feel a little relief.   The pain is in a different place now - it is a stiffness in my neck close to the base of my skull and hurts when I turn my head to fast or too far.  It is not chronic or constant - because it is when i have certain movements.

Medically i can't think of much more.  I am doing much better then I expected I would be doing.  I saw a quote that a friend posted on facebook acouple months ago and i love it.  "I take nothing for granted.  I now have only good days, or great days."  -Lance Armstrong

all of that comfort food . . .

5 months post op - 20 weeks. (in one sentence that seems like such a long, but then short time)  I am still being reminded by John to take it easy.  I am feeling so good that I forget to take pause.  I did try to start riding my spin bike again - I started with 20 minutes and then moved up to 30 and then 40 minutes.  The way that bike is built, you lean forward and it is heavy on needing shoulder and neck muscles.  Probably my weakest area.  It didn't go as well as I hoped - i over did it and paid for it for a few days.  I have since started walking the dogs more, trying for a fast couple laps around the park.  But the Spring is when I like to get out and about and i am always trying to loose those 5-10lbs of what i put on over the winter.  This year especially since I was spoiled with very decadent meals from everyone.  Not one was low-fat, it was soul food, comfort, healing food.  YUM.

ANYWAY, I figured if i couldn't exercise like I wanted I better change my diet.  For 21 days I ate very simple.  I had read parts of the Cinch diet and i tried the fast forward where you eat eggs, raspberries, almonds, spinach (salad) and yogurt. Then i added the proteins and i stayed away from the processed foods that i love.  I can fall into such a bad food pattern that i can eat Eggo/nutragrain blueberry waffles for breakfast and lunch, for days... then what i have i had.  no real food until dinner time.  Especially when you add in my (almost) daily starbucks habit of soy chai's.  Those had to be stopped also.  It was a good reset for me and I lost 8lbs in those 3wks.

I am feeling better, healthier.  I am sleeping good. Can you imagine - ME, getting a constant 7 hours each and every night???  and i realized that without my soy chai and caffine thru the day that I actually had more energy when I ate well.  (go figure)  I do love NATUAL energy - but i don't always prioritize it.

kicked out of physical therapy....

I knew the day would come when Gina cleared me and told me my range of motion was where it needed to be and the hours of core and balance work had paid off and left me strong and ready to be cleared to do things I used to.  I knew we were working towards this, and we were close but THEN..... ugh.  my insurance benefits are such that i get 20 sessions of physical therapy per calendar year.  that's it. I guess it dosen't matter what you DO - or why you need them, but 20 better be enough.  I had already gone 27 times.  By the time billing caught up to the calendar it left me with $1,000 balance.  (i was paying a percentage of each visit - and then was billed 100% for the 7 they wouldn't cover)  So luckily Mountain Valley worked with me on the bill and we are paying it off over the next few months. The real bummer is - no more Gina.. no more neck adjustments. I loved my Tues and Thursdays - neck adjustments were the BEST!  I am doomed to be stiff and sore.  Thanks Humana for all you paid during my 120 some thousand dollar surgery - but could you not spare me a few more PT appointments until Gina cleared me?

four months already

Where is the time going.  I had lost count on how many weeks it had been and so I sat down with a calendar and just like that it has been 16 weeks!  E V E R Y T H I N G is going as it should be going.  I actually seem to be forgetting and remembering things at the same time - as time passes. (if that makes any sense)

I barely remember any pain associated with my surgery.  I forget how (or if) it was painful to turn my head.  I only remember on New Years Eve- being at a party and wishing I had a lazy susan so I could just be turned from one conversation to another so I didn't have to turn my head to see or talk.  So, it must have been uncomfortable.  I don't remember all those days in bed and the hours I slept.  I remember being sick and needing a change of scenery. I do remember Christmas, but not the other 17 days of Christmas vacation.

I don't remember not driving for those 6 weeks and what I did instead (having to rely on John or friends).  Off the top of my head I didn't realize how many people brought goodies, cards and meals.  When I look thru the pile of cards that stacked up on the shelf next to my bed, some I don't remember seeing and some jog my memory of  - "oh ya - she stopped by and was in my room" or "they left those awesome cookies.." "those chocolate covered marshmallow grahm cracker things" or "she took my girls that day for a play date"

And - all of those people that took their time to cook for us, 27 families!  I have a special thank you in the works.  I feel so in debt.  I am also still in shock that there are that many moms in my neighborhood with serious-cooking skills.  Makes me feel like I am missing an important skill that I am suppose to have. (I thought cooking was optional)

The feeling of having to be fragile and careful is leaving me.  I can handle a trip to Costco solo and $192 later I can get it all back home and put away (including cat litter) without needing a break or nap.  I am just more thoughtful of how I lift of move something.

My stamina has really turned the corner in the last 2 weeks.  I have gone from resting daily (laying down before my day is over) to maybe just going to bed earlier.  I am walking more with the changing spring weather and I am ready for a little vacation where just a few weeks ago I passed on the chance to do Disneyland for a day or two.  I could have never walked the park for a day.

This week I am celebrating my 4 months with pushing myself to do physical activity everyday and have gotten back on my spin bike this week.  Also eating and sleeping better.  I have gotten into some lazy habits with my activity and eating lately.  It is so easy to indulge before a surgery and during recovery -  I need to turn that switch off.

So in summary - of what I remember - it has been a pretty good four months!  I have done more then I thought I would be doing, and I did it all sooner.  I think I had some things in my favor (in no particular order - here it goes).

1. An excellent surgeon,

2. a super supportive husband & family,

3. a "village" - with the most supportive and thoughtful friends

4. a great physical therapist who i trusted and who pushes me hard,

5. a positive attitude and much gratitude for what i have

6. the ability to quickly get off my pain killers/muscle relaxers that were making me feel so out of my skin (without addiction/etc)  My recovery was faster without them.

7. Ariel, the energy healer.  WOW, without her - i actually can't even imagine getting to the hospital in one piece.  It really helped my mental status.

When people hear for the first time that I have had this surgery- their reaction is usually to tell me how sorry they are.  I respond by telling them that I was so lucky to have had this surgery and that I am in a much better place.  It also takes me back to the days early last fall when I counted down the days (twice) and wondered how the surgery would go.  The anticipation was 10 times worse for me then the actual recovery.  Recovering was a breeze in comparison.

4 months - see how my hair is growing to the left.. it's about to get annoying.

the dust settled and we paid the bills

The medical bills started pouring in around the first of the year, but i put them aside and waited to see what insurance would pay for.  Then I waited a little longer, and finally the dust settled.  It was time to sit down and open each one and prioritize them.  I made a big list of all the payee's and then sat down and called each one.  Most we paid off but I sent up a payment plan with the hospital - just because Dr. Oro's bill is still hanging out unpaid.  the insurance said it needed to be resubmitted with different codes so they could deem it medically necessary. (isn't that weird.?)  If they have question, why are they paying all the other bills associated to the one thing that may or may not be necessary??

a table full O' bills and Cheeto the paper weight.
(soy chai from Kathryn and breakfast burrito from Rick)

THREE months ago today }

Has it really been 3 months?  The time has been a bit of a blur. I would say the couple weeks after surgery I do not remember well.  I will see a photo or look thru the cards that I got post surgery and not remember seeing them.   I don't remember being in a ton of pain, but I remember how much help i needed.  Walking down the stairs, taking a shower, getting something to eat,  no driving for 6 weeks.  I remember when I walked downstairs by myself for the first time and was in big trouble with John, the girls and Alice.  Friends stayed over when John traveled, came to bring me starbucks and there were dog walks too. Still a bit of a blur - but I know it all got done.  6 vicodin a day &  Christmas break was a blur.   I remember it was a mix of soaking in all the extra time with my girls, but having to over-do it to prove to them I would be OK.  (especially for Ryan)  I also remember hating that i was counting down the days until they would be back in school so I could rest again.  It was so hard to have them home and not to be myself and up for anything.   I also remember John and his deadlines and all of his work he had.  Doing triple duty at home and having to work his usual 60 hour work week. (at least)  WOW that was an ordeal.

I do remember all the love and support that we got.  And we are STILL getting.  Amazing amounts of dinners, friends having our house cleaned, my mom the laundry woman, rides from friends, playdates for my girls, a visit from my dad/family (which i actually barely remember), and I remember the first few weeks of physical therapy when I thought I would progress at a snails pace.  I had no core muscles and super limited turning radius side to side with my neck.

Everyone has worked so hard to get me better, and I think I have rose to the occasion as well.  Being able to admit that I needed help is big for me. Now that it has been three months and I have a great MRI under my belt I really am moving forward with such optomisim.   I think I am thriving in physical therapy which makes me stronger each day.  It is one of the things I enjoy most about my week.  It means I can push myself a bit more each week and now instead of wearing out by 2 or 3 or 4 I am usually up and about thru dinner.

I have to say I did pass on a quick trip to Disneyland this weekend.  I knew I couldn't walk the park and while the girls would have had a great time going for a day (since John is there for business)  I just didn't want to over do it. On top of the fact that I still have people helping out this month because John is traveling so much.  I cant accept a meal on wednesday, and get on a plane with my girls L.A. bound on friday.  That dosen't seem right.

Here are some photos of this week.  

 left: the first time i walked to school to get the ladies since my surgery.
middle: my hair growing back.  You can't see the scar the way my hair is growing (to the left)
right: here is the guy that worked just as hard as i did to make me better.
(enlarge for photos - i had to post them smaller to fit on the page)

soy chai fairy and meal angels......

I have a soy-chai fairy. (iced grande 8 pump soy chai) sometimes finds its way to my doorstep in the early 9'oclock hour.  Don't i have the BEST friends! (thank you Kathryn!)  

I also am so fortunate that my friends have extended my meals another MONTH!  M/W/ and some Fs. John is traveling a bunch this month.  3 out of the 4 weeks in February.   Alice put out the call for meals last night and the calendar was full before morning.  I feel so fortunate and so in debt to all of my wonderful friends.

how is that stamina coming along?

Mountain Valley moved in to their new space so i thought I should document the new space where I work hard (and talk a lot) during PT. Then when Gina got on these Bosa balance ball WITH clogs and stood there nice and balanced doing small squats i HAD to take a photo.  You should have seen me.  I held on to Gina's arm most of the time i was attempting this core move.  On top of this balance and core work I also did 20 minutes of cardio to begin with.  Gina mentioned to me that I should enjoy the weather and walk to school to get the girls (since i had the stamina to do 20 minutes of cardio) BUT - after PT i went to Target, put groceries away and then was done.  I actually hit the pillow about 2PM and tried to nap. (although the phone rang 3 times in that hour)

know each and every time i go, i get stronger - but i feel like there is such a fine line right now between doing things and over-doing things.  I walk that line daily.

first:  Gina  and second: NAP

double digits

10 weeks today.  Photo by Mia.  

(she was only taking the picture if she got proper credit on the blog)

there is almost nothing to SEE.  

Its a love hate kinda thing

So - I have been going to physical therapy (at Mountain Valley Physical Therapy)

When I started the week of Christmas I was a noodle.  I don't know the numbers and stats, but my range of motion in my neck was poor and I could barely feel my core muscles. She would ask my to turn a certain way, or flex something -when i already was doing it to the best of my ability.  That is when I realized how much work I had to do.  And also that I was coming from 6wks post surgery but months and months of doing nothing pre surgery.  I wasn't doing much at all physical, because it hurt.

I was motivated to go to physical therapy because when I had a larger range of motion and felt better that meant I could drive.  and relying on rides for a solid six weeks was tough for me.... who loves my independence.  I'm not sure what I thought physical therapy was going to be, but i didn't know it would be as hard.  Wall slides and (1/2) sideplanks and deadbugs. OYE!  The great thing is i LOVE my physical therapist, Gina.  I of course chat her up the entire time I am there.  (do i ever run out of things to say? - no)  She also makes me work hard and after my eighth visit this week my numbers were greatly improved.  It was exciting to see progress, and also for the fact that I am driving and navagating the grocery store.  Still no vacuuming, and not a lot of chores - that part is OK with me.    I took a picture of the bikes in the room where we the hard work.  I sit on the lowriding granny style bike and pedal away for 10 minutes while looking at the spin bike right in front of me. My poor spin bike at home looks just the same - but much more dusty.

granny bike pictured and the far left and on the wall.. teeny tiny 2lbs weights i use.  they are like paper weights.

Change of scenery } Keystone

We had planned to go to Keystone for MLK weekend if my appt. went well with Dr. Oro and since it did - off we went.  We really only went for one night and two days but it was just what we needed to do a little celebrating and get a change of scenery.   John and the girls had reservations for the tubing hill at noon.  We met up with the Leprys and we all made it on the gondola.  Everyone hit the tubing hill and I got to watch.  The first time my people went down the hill I could see how much fun it was.  I thought that maybe it was something I could do next year.  John rode the magic carpet back up the hill and dashed my hopes with the reality that it was JUST like a roller coaster.  humpf.  Guess i will be enjoying the scenery from now on. (which by the way is an amazing $31 ticket to ride the gondola and walk around at the top)  I was wondering what altitude would do to my head - and oddly when I was a the top of the mountain I could hear little pops and cracks (my brain re-adjusting to the altitude and the pressure?) So, with that being said - i didn't stay up there long.  I was at the top for a little over an hour and was relieved that when I was in the condo 1,500 feet lower - i felt no pops or cracks.  However - i drank 1 beer and it had the effect of 3. (possibly from the altitude and also since I have barely had a sip since last September)  

The next day we took our time leaving Keystone.  We had vouchers from free ice skating - (which nothing is really free) so we went.  It was beautiful there, and afterwards we all had huge hot chocolates with extra whipped cream.  Then it was time to hit the road for Denver.  Thinking we had left early enough to beat the traffic (1230ish) we had planned on stopping on the way home for BeauJos.. but after it took us 35 minutes to get 6 miles just to get on to i-70 East our hopes of getting home any time soon were dashed.  It was a four hour drive home in stopped, snowy, icy roads. But - home safe. and everyone had a great time.

the keystone trip from my iPhone.

One more Thank You

I have to make a separate and public, blog- THANK YOU to one of my Chiari Heros.   In the days after learning that I needed to have this surgery I spent hours dwelling on it and attempting to find positive information on the internet.  Of course instead I was a magnet to all of the scary, discouraging stories.   I had gone to bed one night mentally exhausted and presumably discouraged and scared.

John had been downstairs working when he came up - sat down next to me in bed and got his lap top out... i heard him typing franticly and then a pssst....   psstt...   wake up Lisa.  I rolled over towards him and gave him the most attention I could out of a dead sleep.

He told me that he had found a blog of a girl who had Decompression Surgery 2 years prior - WITH DR. ORO and she was "cured"  It all went well and she was very positive and you HAVE to read this.  I still just had 1/2 an eye open and it was pretty dark in our room.  With that John started reading her blog to me. He read post after post starting in 2007 and quickly got to the posts where she was flying to colorado and going thru the pre-surgery routine. It was all good to hear what goes on the days prior up to the very surgery.  I began picturing myself actually walking myself into the hospital.. head up, positive and being ready (rather then how i was picturing it all to go down - which was me in tears - strapped to a dolly.. being wheeled in and having to be sedated)  -yes, i was that scared.

So - John read on and each post gave us an insight as to what was to come.  It was also a blaring reminder that you get back what you put into it.  A positive attitude is what reaps a positive outcome.  I listened for about an hour and I imagine that night I went back to bed with a bit of smile on my face.

I remember waking up the next morning - writing a few emails and attaching her blog.  I called a few people to tell them what we had read and then I contacted her.  She responded - in spite of being a busy mom of 2 young, twin boys!   She wrote back and told me that she was there to answer any questions - - - and with the change of my surgery date and the anticipation of waiting even longer I did have many questions.  She encouraged me (or anyone) to seek the expertise of Dr. Oro and I whole heartidly agree.

I want to thank you Jennifer for documenting and sharing your blog for all who find it.  It was such a resource of uplifting information.  I had started this blog before I found yours - but it was a reminder to continue to share my story and keep things honest and positive.

Jennifers blog is listed below for anyone who hasn't read it.

I have Chiari blog

Happy Tears

John and I went to see Dr. Oro (my neurosurgeon) this morning. I had an MRI this week and couldn't wait for him to tell me that he saw the improvements that I already felt. 

I first passed my basic neurologic tests (the silly things like following his finger and sticking out my tongue) and then we went into the film room. He pulled up my MRI and instantly there was improvement that even I could see. My syrinx (which is the cyst in my spinal cord) had dramatically shrunk. There is grey matter on both sides which is showing healthy flow of spinal fluid. YIPPEE!! Exactly what needed to happen! My brain is also in a better position (I will take his word for it since I am not sure what "normal" looks like)

He told me to continue my positive attitude, going to physical therapy (at least another month), and reiterated the importance of taking care of myself. 1. sleep 2. diet (reduced grain) 3. exercise  4. doing what makes me happy (which i will say is sewing & my art). I think that is great doctorly advice. He reminded me that days of playing contact sports are over and that I can not ride high speed roller coasters any more. (My SixFlags days are over before they even started) I can ride a stationary bike for now and it sounded like I could take some cues from my physical therapist when I would be ready to balance and ride a real bike.  That may mean the trails of Cherry Creek when the weather is (much) nicer.

I told him how grateful I was for him - and just as we were done with my appointment my happy, thankful tears started flowing. He gave me a hug and told me that it was his pleasure to work with me. I kept him a little longer and continued telling him that he had given me so much back, and so much hope for the future. He shook John's hand, gave me another hug and left quickly. I am positive that was not out of disrespect, but I think he may have been moved to tears as well. It was very emotional.  (maybe doctors or neurosurgeons DON't cry, but i know his soul could feel my gratitude.)

John and I left Dr. Oro's office teary eyed and as soon as I made it out the office doors I was in near hysterics.  I was crying so hard sound wasn't coming out and by the time I made it to the car I was wailing.  It was such a release of the happiest tears I have had in such a long time.  I did something that I didn't think I could do.  This was my first ever surgery -and I started with a big one.  All the anxieties that I had pent up since September 1st when I first learned I had to have surgery to now  - All of them were released.  I sat in the car and cried for 20 minutes, reminding John every few that they were purely HAPPY tears.  The BEST kind.

Now is when I have to thank ALL OF YOU who played such a big part getting me to the place I am right now - which is pretty damm good for being 8 wks out of MAJOR surgery!   I needed a specialist to do my decompression surgery, but I needed ALL of you equally as much. 

I was told two years ago that I should consider this surgery and I did not go ahead with it. The first reason was because I didn't have the cyst yet (even though I knew I eventually probably would), but I also didn't have a huge community of people willing to lend a hand.  To my friends and my mom who are here locally - You all have been the reason my recovery has been so much easier then expected. The meals, the rides, taking my girls, walking my dogs, giving me rides, lifting my spirits, the starbucks delivery, helping with girl scouts, shoveling our snow, taking out my trash/recycle, helping John, dropping by lunch - I mean the list goes on. We are lucky to be surrounded by such a supportive community and group of friends. You all are so amazing and we feel so blessed.

And to those of you who I don't get to see everyday but still played such a big part.  My Dad, Pam and Kimberly coming the weekend after my surgery to help was such a great diversion for my girls. (thank you) And to my Dad for the hours spent on the phone talking me out of a negative mind set and being the factual potomist when i wanted to be the emotional pesimist.  And while my Iowa family wished they were there sitting in the waiting room that tuesday morning I knew their minds and prayers and hearts were there.  Then all my friends from a distance - the Rivers from the other side of the world hooking me up with a cleaning lady(with the help of Cindy & Alice), facebook well wishes, prayer chains, uplifting text messages, emails that kept me company, offers to come help, fed ex packages with goodies and beautiful flowers.  I am not used to such spoiling!  BUT am SO THANKFUL.

I hope this blog can continue to bring more news of healing and getting back to life as usual around here.  I will give myself a year (if possible) but the celebrating starts now for me.  The positive attitude of healing continues.....

Dr. Oro showing us the good progress

Add caption

8 weeks

The photos of my scar are much less impressive.  Really it is just a small bald spot at the top.  The rest of the hair below is growing back.  I thought I would instead show a comparison this week so show how much my hair has grown.  Week EIGHT.

night number three - week eight

EIGHT week update -

Eight weeks ago this morning I had my decompression surgery.  Sometimes I feel like I am doing really good, and others I feel like I should be doing better or more.

I was just about to post last week that my physical therapy was very slow going.  I was on a hand bike, and then a granny bike (the one where it sits low to the ground and you pedal, and there is a fan) The one i wouldn't be caught dead on in the gym.  But last week we turned up the pace.  I was worked... wall slides, side crunches, tons of core stuff.  OWE. and Gina worned me I would be sore.  and I was.  Friday & Saturday i was super sore but by Sunday I felt better.

On Sunday, John took the girls to see the Globetrotters for Ryans birthday. It was a great snowy day to stay inside (where else would I really be anyway?)  But while I was enjoying the house to myself I over did it.  From dishes, to laundry and many trips up and down the stairs (without going over my 20ish lb limit of lifting)  And then........ the pantry.  It needed to be done because we were getting little moths.  So I pulled everything out and while doing so a stupid box of cereal fell from the top shelf.  I winced so it wouldn't hit me and instantly felt like i had done something wrong.  I hope it is nothing as serious as if feels.  It is on my left side (always my problem side) and it is SORE.   The disheartening thing is that it was only a few hours later I felt tingling in my feet. (the bad sign of Chiari that you dont want to feel)  SHIT if i didn't over do it and THIS WEEK..............

So today -  I am leaving right now to go see my PT-Gina to see if she can work on my neck and see if she thinks i strained something.  Lets hope it is something fixable!  and not something more internal.... like a spinal fluid leak or something like that.

It is also 1.11.11 and at 1:30 I check in for my MRI at 1:45.  I will leave with a disc and will try really hard not to use the MRI software i have on my computer to open it up and take a look.  I have an appointment with Dr. Oro on FRIDAY!  So he can read it and tell me how it all looks.

photos later - I rambled so now I am in a rush.

Now my break starts again

17 days of Holiday vacation.  Great time to spend with my girls but also much less time in bed healing.  It was a long break with pretty poor timing (as i figured it would be)  and on day 15 it was time for them to go back to school. The bickering and fighting started between the two and they were missing their friends.

Wednesday John got them out the door but on thursday it was my first SOLO get them ready, fed and out the door. (although, thanks John for making their lunches a head of time)  It went well - I drove and dropped them off and Mia made sure Ryan got to Kindergarten OK.  All is well.  I am resting and blogging - DAY TWO.

left: after day one back at home and they hadn't forgotten about those ridiculous suckers.
   right: day two - i got them up and out. 

Road Trip

I made a point to get the girls out of town during break and make it up to Fort Collins to go see my favorite - fancy massage therapist.  (it is a neuro-muscular massage)  So, John packed a ton of snacks, we had the DSi's charged and we were ready for the road trip.  One measly hour, but it was nice for a change of scenery.  Mia was all jealous that I was getting a massage but this one hurt.  I would tell Rebecca... OWE... and she would answer with "i know"  I will go back again when I can drive myself.    I didn't get a photo of Rebecca's new digs, but when I was sore at lunch Ryan offered to help.  

at lunch at Laluz and then enjoying the view on the way home.

7 weeks looks like this

You would think with a professional photographer husband I would have these fancy photos of my scar and my hair growing back but instead I reach for my phone and ask him to take a few for me while standing in the bathroom.  My hair is growing so fast - the botom scar is almost done.  7 weeks.  

7 weeks

Tis the season -

I take my Holiday cards seriously and spend a ton of time on them. I got about 40 out and then hit a wall.  I had to finish a few gifts I was making before Xmas and then after the holiday I spent those two days detoxing and then all of a sudden it was the new year and too late to send Holiday Cheer.  So here it is online.  Wishing your family the best in 2011 and also giving thanks for all of our blessings in 2010.

Ryan, Cheeto, John, Lisa, Tootie, Mia and Olive.