Saturday, May 31, 2014

Saying Goodbye To Le Chateau (And Other Thoughts About Life)

Remember when you were just a kid with no responsibility?
Maybe you had a household chore or two, but really you had a pretty easy life.
Someone else had all of the worry-all of the burden of making hard decisions.
Someone else had to be the grown-up.

Some of us had tainted childhoods. Childhoods filled with fear, pain, abuse and/or neglect. 
Others had cheerful childhoods filled with toys, hugs, laughter and joy.
Sadly, many children had illnesses that prohibited them ever reaching the high ranks of adulthood, 
or mental deficiencies that prevented them from realizing the difference.
Sometimes I think regardless of our childhood experience,  at least there was a little time when we were off the hook and someone else called all the shots.

My week has passed with a few hard good-byes.
Over the past two years since I was diagnosed, there have been many goodbyes of various sorts.
During each of these changes, happy and sad- 
I longed for childhood again. 
I longed to be able to hide behind my mother  and peer out from around her legs(I was a very shy child) 
and know I was safe, protected. secure.

Thankfully, my mother is easily reached by phone for any crisis, but since she lives nine hours away, there is no hiding behind her--and since I AM an adult, for better or worse, she is always happy to listen and provide input-but the decisions belong to me. 
I own my triumphs and my mistakes. 
Adulthood--What a letdown! 

A few days after my last surgery, I got an offer on my house. 
Time for one of those adult decisions I would rather not make-but I managed to make, despite the heavy pain meds in my system.
Having the house for sale was one thing. Actually selling it--was quite another.
If you've read this blog before, or followed it for any time, you know I am married to Bob, we married just over a year ago with his and hers houses--and now an apartment in downtown Dallas.
We moved in order for him to take a new job. 
The houses have been on the market for a few months. The day we've prayed for, but I've secretly dreaded, arrived. To sell or not to sell.
Time to be a grown-up.

My past seven days have been filled with moving out of my house, both physically and emotionally.
I named it "Le Chateau"--I know-who names their house?--We are in Texas for goodness sake- we only name ranches, trucks, children, pets and guns. 
Well- I named my house when I bought it in 2011 because I added many French touches to the interior and because, I'm a little eccentric, morbidly weird and, well, because I just wanted to!
With the help of a close friend,  I shopped, created, painted and refurbished my little chateau until it was a statement of ME! I was healing from a rough divorce and getting in touch with myself again after twenty years of marriage. 
Painting, moving and decorating revived me and brought me back to the person I was before-- I found myself again, and I realized that I really like who I am!  So this little chateau was more than a house, it was my home and very healing in many ways. 

After several months of living in Le Chateau - I met the man who stole my heart- We fell in love in this house, began our marriage there, literally, our wedding was in the back yard. We had holidays there (good ones and...um-not so good ones- We keep joking that we are going to have t-shirts made that say, "I Survived Easter 2012" -That's a story for another blog!)  and I recovered from my first brain surgery there. 
So yes, this house was truly a home and it was difficult to leave.
Bob and I on our wedding day in the back yard of Le Chateau.
My mom to the far left..I love that she is in the background. 

So, at five weeks post op- I drove two hours back to Waco-(big accomplishment, until this point I had only driven to work- four minutes-) and spent several days packing, cleaning and preparing  Le Chateau for it's new family.

I'm so grateful to our friends, Jason,Tami, Aaron and Alisa for coming by, helping move things and packing.  I'm grateful for friendships old and new-for Stefanie who knows my heart, shares my twistiness and took a few things off of my hands that will not fit in our loft, but that I couldn't bring myself to donate or throw away, for Jason and Tami, who would do anything for anyone at anytime-they are true servants and great friends-they are rescuers who never mind being called at the last minute to lend a hand and for Aaron and Alisa, both friends and business partners- who pretty much forced us to eat everyday we were in town, came and sat on the floor with us on our last night there, and Aaron, who ate lunch with me on the last day, keeping me laughing so I forgot about crying. These two have been great over the past year we've known them-Aaron even drove to Houston when I had surgery, gave me a hug before I went back and stayed with Bob and Kait until I was safely in ICU ( round trip, that's seven hours of just driving and he had work the day before and the day after) We can never thank him enough.

Bob left early on the last day, he took our fur babies back to Dallas.  So, I was alone, just the house and I, like in the beginning. I sat on the floor and wrote a letter to the new owner.  For me, it was a love letter to the house and a bittersweet good-bye.  I walked from room to room, feeling the emptiness,  whispered "thank you" and "good-bye" -and I tell you in that moment--the house and I were one.  I felt it say good-bye, and I knew it was time to go.  I locked the door, 
 left the note with a beautiful hanging plant on the porch and drove away. 

Why am I telling you all of this on my blog about Chari and Arachnoid Cysts? 
Because- for me, aside from the discomfort associated with packing- I got to focus on something else for this week.  Chiari did not rule my world for a change. I did have to rest frequently and take naps- but I was not "Brain Surgery Girl". 
I was pretty much normal for this week.
And I liked it! 

As I drove back to Dallas, I'll admit- I cried most of the way. I started thinking of all of the good-bye's I've said in the past few years. 
Good-bye to a marriage- which meant good-bye to a family that was my family for over twenty years. 
Good-bye to my children that grew up, moved out, went to college, became adults. 
Good-bye to friendships that I still struggle with and still miss. 
Good-bye to my life before Chiari and Arachnoid cyst  reared their ugly heads--
and finally, Good-bye to Le Chateau, my refuge, my home. 
Le Chateau the day before I said "Good-Bye".

As I was driving up I-35E, I rounded a curve, just past the Dallas Zoo exit and caught sight of the Dallas downtown skyline.  Immediately, I felt joy and hope-a new beginning! 
Almost trance-like, I maneuvered my car in the afternoon traffic to my exit. 
As soon as I could, I pulled out of traffic and typed into my phone all of the great things that the aforementioned good-byes have given me: 
-A new marriage, better than I ever thought marriage could be- with a new family that loves me,  new sisters, a new son, a daughter-in-love,  mother-in-law, cousins (should that be cousins-in-law?)--a family that has welcomed me with open arms and open hearts. 
-Grown up children that are now young adults. They have real conversations with me, have meaningful lives, hang out in ICU with me, and bring my grandson over to visit. 
-New friends that while they don't replace the ones I've lost- they take the sting away and are invaluable in my life. 
-My life after Chiari and Arachnoid Cyst were diagnosed--How do I count the ways these lifelong disorders have blessed me? Yes..they are a blessing (I don't say that every day, trust me)
Here are a few blessings I can call by name: Katrina, Misty, Simone, Taren, Tonya, Melissa, Megan, Dave, Vonda, LaTonya, Layne, Kristen...and the list goes on.  
Also, under this blessing category I can list: 
                  My passion for writing as been reignited.
 My life purpose has greater clarity: To reach out to those suffer with these conditions, to be their voice when they feel they don't have one, to hold their hand as they face surgery and during recovery, to let them know they are not alone, that someone does understand and that they are worthy of love, comfort and support.
-My Plan B business has become Plan A in order to keep me away from twelve hour shifts and sleepless nights on call, while still affording the ability to travel, write, speak and learn. 
Through this business I've met wonderfully benevolent, positive people who have helped and encouraged me along the way.

So what, you may ask,  great thing came from saying good-bye to Le Chateau? 
Besides the obvious-one less mortgage payment each month-
I can now stop living with one foot in the past and one foot in the future. 
Bob and I forge ahead with this new life in a new city filled with new adventures, new friendships, and new challenges. 
We do this with joy,excitement and a sense of urgency. 
We are eager to grasp all this life has to offer and to give back all we can to others.

Yesterday, a dear friend of mine, who has leukemia, posted on Facebook that one of the actual side effects of her medication is "inappropriate happiness".
How ironic for a person in her condition?  Yet also, How Awesome! 

So,as I look at all of the boxes I have to unpack, and furniture that needs to be arranged, pictures and mirrors to be hung, with muscle spasms in my neck, abundant incisional pain and a heavy dose of fatigue weighing down my body--I'm smiling and thinking..I've got a little bit of what my friend has.
 I'm inappropriately happy and ridiculously optimistic, it's a side effect of starting a new chapter of life. 
There truly is joy to be found in every day. 
I encourage you to go find yours. 
Even if you are an adult.





Saturday, May 17, 2014

"Hello Clarice"

So, I've not posted for a few days..several days.
Actually, I have five posts I've not published yet because they are...in a word...depressing.
This surgery took me to a really dark place.
My mood goes from elated to traumatized so quickly that I can't keep a handle on it.
I'm a month post-op and I actually feel amazing-my emotions just do NOT agree sometimes.
My pain is minimal. I still have some numb spots..and the left side of my head is so raw feeling it's hard to describe.  I feel like I've been skinned... Like anytime Anthony Hopkins might whisper in my ear "Hello Clarice".  My vision is blurry 95% of the time and I've actually totally lost vision a couple of times...not fun.  However, it's funny what becomes normal.
Today, in the car going to visit a Chiari sister that just had surgery 4 days ago (and she's doing AWESOME by the way),  Bob and I are talking about traffic and whatever, and I'm like, "Do you think it's weird that last night I couldn't see for a little while and I'm all like, 'I can't see' and you're like 'okay' and we went to bed.  Shouldn't we be concerned about things like that?"  He just kinda shrugged his shoulders and we laughed.  THIS IS NOT NORMAL BEHAVIOR!!!! 
OR like at work, talking about surgery, I made reference to how freaked out I was as a new nurse by a patient with a burr hole in their skull.  My comment was about if I had a shunt it would be like a simple burr hole like my patient had and an abdominal incision or two..no big deal.  The nurse I was talking to just stared at me.  She was like.."Yeah, I guess its all relative, you talk about it like it's a broken leg."  Amazing what we get comfortable with.  

That being said, this recovery is so drastically different from my first surgery.  I just can't even describe how I good I feel and I have this almost surreal calm feeling. Like I'm okay and everything is going to be okay from now on. That being said, occasionally I get ahead of myself (no pun intended), and my brain reels me back in.  I guess that is the nature of the beast..but I can handle it.

DOES THIS POST MAKE ANY SENSE???  I promise, I am not currently medicated..well, not with narcotics..I do have some Flexeril on board.

I actually worked two days this week.  Two whole eight hour work days.  RN's usually work high paced, busy super nurse jobs.  I'm done with that.  I have an occupational health job, I work PRN (as needed) instead of full time and was even told to take a nap if needed.  I'm so thankful for the nurse coordinator I work for and the way they have worked with me.  Amazing. I have two more days of work planned for the upcoming week and really, I am not going to push it. I think that's enough.
In my spare time, I'm toiling away on my book, working on a new website and doing my best to stay positive.  I'm changing my eating patterns to strict Paleo, as recommended to me by Dr. Oro  and I will take Protandim for the rest of my life. Protandim is THE only thing I did differently in this recovery and I know that the way it helps my body on a cellular level is why I've done so amazingly well this time.

PERSONAL NOTE: Six months ago my husband and I got involved in the company that makes Protandim for the financial opportunity, as I knew the writing was on the wall with my health interfering with my nursing career.  I never expected this change in healing, I read all of the studies and researched, but-If you haven't noticed--I am sometimes not so optimistic..(understatement of the year), but didn't expect this whirlwind recovery.  I've not wanted to mention it because I don't want to be salesy or pushy, I think I may have mentioned this one time before in a blog post, but now I'm thinking it's selfish to not tell you about something that could help you. I'll be glad to provide more info to you if you want to review the science behind it.


Other things that are happening:  I'm walking in the Conquer Chiari Walk Across America on September 20 in Houston, TX.  I live in Dallas, but am walking with the group in Houston because a big part of my heart now resides in Houston (or nearby)--and I want to walk with my Chiari sister there. I'll post more info about that in the near future.   Also, I'm now a chapter leader here in Dallas with ASAP.. American Syringomyelia and Chiari Alliance Project,  I have been talking with the Board of Directors and will be a group leader at their national convention in Princeton, New Jersey in late July (I am so honored and excited to do this).  I'm meeting the most amazing, resilient people and am beginning to see how truly blessed I am to have  Chiari Malformation Type 1.  

As far as this Arachnoid Cyst goes...I have to start giving it more credit in my life.  This gnarly cyst has been as much of the problem as Chiari and needs more credit. More awareness in needed.  I've been asked to join the Board of Directors of The Arachnoid Cyst Foundation and  my blog is now featured on the  Foundation's website acyst.org .

So, I realize this blog post has been a bit different, more informational than anything..but have no fear--I'll get back to being gritty and twisty. I'm working on a post about my first day back at work..that was interesting. 

Thank you for reading..Have a great weekend! 
Taren Thomas and I, she is four days post op! Doesn't she look great?


The classic zipper shot, huge difference in appearance from mine at 4 weeks and hers at 4 days. 



Monday, May 5, 2014

FRAGILE-Handle With Care

As I type this, I'm in bed.  Literally, in bed. I've been here all day. 
All day.
Surgery recovery is a lonely business.
No one can really help. 
My mother recently said to me that I am in "survival mode".
Am I?
I laugh and joke when I can...and probably more when I shouldn't or when things are really bad.
I fire off a semi-interesting blog post or Facebook status and Voila! Everyone thinks I'm happy and that I'm all healed up and ready to take whatever they choose to dish out.
Yesterday, I saw a post on a blog called "Life With The Lyons", 
In this post, the mom  (mother lion) was defending her husband, apparently her husband has Chiari and/or related disorders and someone at their church offered comfort by saying to her, "At least it's not cancer."  This Mama Lion was furious.
I don't blame her. I even applaud her.  Good for her. 
She made a quick list of things to NOT say. 
Seriously, it's not that we are that difficult to deal with--we are just exhausted. Completely, totally exhausted. Our skin is not thick. We are FRAGILE.
Please, handle us with care.  

As I type this, I'm in bed.  Tears are literally pouring down my cheeks and my already sensitive vision is even more troublesome with the presence of these waterworks. 
In the past two weeks,  I've been pretty secluded. 
My texts are brief and sometimes I don't answer phone calls.
I explain this to people and apologize for being light sensitive or feeling weird when I talk. 
The usual response I get is no response or , "I won't bother you then" ( which they obviously mean because I don't hear back from them... EVER.) 
I live where I know few people. I have only an occasional visitor even when times are great...
My "friends" all live far away and I greatly fear I have successfully eliminated them without purposing to do so. 
One such person tells me I've built a wall around myself. 
Thus, the tears. 
I rush into the other room and bury my head in Bob's chest and he holds me as I pour out what a horrible person I've become and how everyone seems mad at me and how I can't help it and how I just need him to take care of me. I look at him, his kind eyes are tired. Now that my caregivers have both gone home, it's all on him and its too much. He is taking care of me as best he can. This is the third day with just the two of us and it's too much. He makes sure I eat and sleep and drink, he cares for the dogs, he goes to work, he listens to me whine and all I want is more.
I will my body to be more energetic and my head to not hurt and tears to not fall..and my body refuses to comply. Like a rebellious child stomping its feet, my sobs cause my head to throb, each beat of my heart causes pain in my head mixed with the pressure of crying and I'm nothing but a fragile mess. 
So I retreat here to you-my blog- the place where I say what I want unashamedly and the blank page welcomes my words and my wounds. Here, I can dim the brightness, make mistakes, take breaks and no one is the wiser. There is no judgement here and no expectations. Crying is totally allowed and completely necessary.  No one is telling me how busy they are or making excuses as to why they haven't called.
No one is making it my fault or making me feel guilty or making promises they don't intend to keep.
No one is telling me to be thankful it's not worse.
Here it is quietly welcoming and my soul is soothed as I once again talk myself down off a cliff, tears dwindle and the roller coaster slows to a stop.

My hand traces the incision on the back of my head and I am horrified and amazed at the reality that this has really happened. I had brain surgery-again. This is no walk in the park. It's okay to be however I am. 
Maybe one day I will be able to explain that in a way that can be understood by everyone, not just the other people like me. 
Pity is not what I want. 
I need you to understand, I have changed. 
I didn't quit loving you or being your friend. 
It's just that now I am fragile.
Handle me with care. 


Sunday, May 4, 2014

2nd ASAP Support Group Meeting May 3, 2014


New Member, LaTonya and I.

New Member, Taren and I.  Taren becomes a Zipperhead May 13, 2014.
(Not sure why this captured my cell phone info)

Our fearless leader (and my sweet friend) Simone..with my birthday cake!
Yes they did the very sweet..and embarrassing..singing thing.
Very special..Thanks Guys!

Five new members this meeting! 

Vonda welcoming new member, Cherrilynn (hope I spelled that correctly)

So much to share and learn in such a brief time!

Add caption

Our Brain Crunch Brunch  Group
and a quick thank you to my husband, Bob, not pictured because he was the photographer!

Our second meeting was yesterday.  I was thankful to be able to go.  I will admit, I was also glad to get back home and into bed, where I stayed the rest of the afternoon and evening.
There is so much to learn from the experiences of others. We all have something important to share.
I left this meeting with the same warm feeling as when I left the first.
No, not with a fever.
I left with the feeling that something remarkable just happened.
I hope everyone felt that way.
I don't know how to describe the feeling of looking into someone else's eyes and seeing love like this.
It's different than romantic love, or parental love.
There is an empathy, an understanding, a bond.

If you live in an area with no support group, I urge you to start your own.  I know there are groups online, but there is such a difference when you are face to face with actual, real human beings.
The isolation of this condition can be horrific.
I feel very alone most all the time.
Reach out to others and make a difference.
I'm so glad I said, "Yes!" when Simone asked if I'd join her in this.
Someone is out there waiting for you to make the first bold move.
Do it- You will be glad you did!

My Imperfect List of Top 10 Things to Not Do After Brain Surgery

Disclaimer:  These are the things that stand out most to me. Use your own judgment and always discuss with your doctor when in question.  THIS IS NOT MEDICAL ADVICE.

My Top 10 Things to NOT Do After Brain Surgery:

10.  Don't try using a WEDGE pillow- the people that  bragged on these things should be strung up- they are miserably uncomfortable.  Use pillows you love and stack them. You will not be comfortable laying completely flat for at least 12 months because this increases the pressurized feeling in your head. I was determined the people that recommended this expensive sleeping apparatus knew what they were talking about and wrestled with it for a few weeks before actually returning it to Bed Bath and Beyond (they are about $59).
9.   Don't let your narcotics dictate your food choices.  To me opiates whisper these two things in my ear- "Cheez-Its" "Reese's Peanut Butter Cups". Have a plan beforehand.  Whomever your caregiver is..be firm.  They will give you whatever you say you want to eat when you have a fresh zipper in the back of your head...This is FACT.  Junk food on an already compromised adrenal system will result in a weight management nightmare.
8.   Don't go home without a prescription for nausea medication and muscle relaxers.  Oddly enough, the docs are good at throwing out opiates but tend to forget these other two very important pharmaceutical jewels.  Ask for sublingual Zofran-it works quickest-  and your favorite muscle relaxer. If you don't have a favorite, borrow mine: Flexeril 10 mg.  Otherwise when you throw up..and you will throw up, (a combo of dizziness and nausea from the pain meds..) you will have painful spasms in your neck and shoulders (guess how I know?!)..head these off at the pass..ASK FOR THE DRUGS!
7.  Don't skip taking your stool softeners.   No one likes to talk about poo.  Poo is not a popular topic.
You won't even think of poo because you will be glad you don't have to get out of bed to go.  But listen to me on this..Day 5 or 6 post op, it will cross your mind, or the doctor will ask you when he calls you post op.  Then, your focus will become poo..or the lack thereof.  Everyone in the hour will talk about your poo. You will have poo peer pressure. Straining will cause increased head pressure, pain and spasms.  Magnesium Citrate is your friend.  Buy some preoperatively and put it in the fridge (you can find it at Walgreens or CVS, lemon-lime or grape are the best flavors...guess how I know). Go ahead, get some Miralax and a stool softener (ask your pharmacist what works best).  You will thank me later, I promise.
6.  Don't wash your hair with baby shampoo.  I did this at the recommendation of a well-meaning person in a FB group.  The docs don't really specify a shampoo..and this is harsh on your hair. Your hair will change texture a bit as it is, no need to help it turn into straw.  Dry shampoos work well for a clean feeling (which is short-lived), but once you start shampooing, use conditioning shampoo. My hair took over a year to get back to it's original texture with this first surgery (I used Burt's Bees Baby Shampoo the first go 'round).  This time I used Giovanni Organic Shampoo and Conditioner..and Kerastase Nectar Moisturizing cream..much better).
5.  Don't look at your incision immediately upon bandage removal.  If you've seen Frankenstein (or my post-op photos)- you can bet you will look just as horrible.  You will break down and cry like a baby even though all this time you've been looking at the photos of others and knowing how it will look.  A day or two later is better to look, after exposure to the air, the inflammation is decreased and it doesn't look as frightening.
4.  Don't  go without lip balm on your lips for any length of time the first 2-3 weeks. Your lips will crack, peel and bleed.  Drink, Drink, Drink water. Your body needs to stay hydrated to keep your lips, skin healthy during this physically traumatic time.
3.  Don't under hydrate prior to and after surgery. Drink, Drink, Drink water prior to surgery (NOT DAY OF), you will be told to not eat or drink after midnight the night before..follow that rule, however, prior to that time, hydrate as much as possible.  You will wake up with multiple IV's, probably and arterial line and possibly a central line.  I woke up with a 14 gauge (that's a very large gauge) IV in my foot the first time because I was dehydrated.  I am usually an easy stick, but I guess being anxious I didn't think to drink.  So-you remember: THINK TO DRINK!
2.  Don't tease the poor nurse who is starting your IV before surgery or re-sticking you after surgery.  Being a nurse myself, I teased my nurse (1st surgery). I told her I am an easy stick and if she couldn't get an IV started on me, she needed a new profession.  I was laughing, of course.... until she couldn't get an IV started and had to stick me multiple times and ask for assistance.  I woke up looking like I had wrestled with a porcupine.  I had the 14 gauge in my foot, an IV in each hand, one in my forearm and an art. line. The ICU nurse told me they had lots of trouble getting patent IV's on me.  So with surgery #2, I gulped water down the entire week before and I DIDN'T TEASE THE NURSE.  I'm not sure which worked for me..but I had only two regular IV's.. a 20 gauge and and 18 gauge and an arterial line when I woke up. They were able to discontinue my central line in the OR.
1.   Don't talk your mom..or anyone  else into coloring your hair right after surgery.  Around day 7 or post-op (second surgery), my hair color looked horrible to me.  I couldn't just be happy being alive. I wanted to look alive. Big dark circles were under my eyes, bruises on my temples, swollen, painful spots from the head fixator stuck out of my hairline, my hands, arms and neck were bruised from the IV's and central line, my lips were cracked and my nails were paper thin from me removing the Shellac from them a few days before surgery. For some reason, I just got fixated on my hair.  l sent my mom to Walgreens for necessities, magnesium citrate, pre-packaged enemas (just in case) and Garnier Nutrisse Haircolor: Darkest Brown.  What do you think we did first?  Drink the mag citrate?..No Way! Once glance at the clock told us Bob wouldn't be home from work for another 45 minutes. So, we used an occlusive dressing, covered my incision and Mom colored my hair.  I sat still for 25 minutes, holding my head up on my own while the color set in. It never occurred to me that it would hurt like the dickens to rinse out. See, the nerve endings around the hair follicles are so super sore, even today, 17 days post op, my head feels raw. I still only gingerly brush it. So, when my mom started rinsing out the color...two things happened. 1: I had spasms when I bent my head over to rinse it, so I was in massive internal pain and 2: I couldn't bear her rubbing my scalp because it was so sore, so she didn't. Fast forward to few days later, I keep noticing my fingernails are dirty.  I'm constantly washing my hands and complaining until I realized, "Hey, Einstein, you keep scratching your head, which is covered in hair color still...that's not dirt..it's Garnier Nutrisse Darkest Brown!"   Yes, I admit it..I did that, all on my own! So please, color your hair a week or so prior to surgery and save yourself some pain and embarrassment!

SO that's my list..use it for what you will.   Other, more informative lists can be found on various FB Chiari group pages and on Chiarisupport.org (the Ben's Friend's site).

Friday, May 2, 2014

Happy Birthday to ME! Happy Birthday to ME! Happy Birthday Dear ME-EE! Happy Birthday to MEEEE!

As you may notice by the way I beautifully sang the title of this blog...I'm feeling better.
No, today is NOT my birthday. 
By now, everyone knows I had my second brain surgery only sixteen short days ago on my birthday (April 16-just in case you want to make a note to send me something FABULOUS next year- I'll pause briefly for you to make that note on your calendar.)

I literally waited about forty-five seconds for you to make the notation. 

I'm singing because yesterday was a good day. 
Yes, I spent eight long hours in our bumpity-bump truck with my head totally uncomfortable the entire time..but two...no, make it three very important things happened yesterday. 
Again..in order of importance: 
1.  Bob, Lindsey and I got to have lunch with Katrina and Misty!  
2.  I got a BIRTHDAY CAKE!
3.  My neuro report card was pretty much an A+ and I'm stitch-free!

Did I mention I got a BIRTHDAY CAKE?
Bob and I with my surprise cake..as you may notice- I am only 8 years old! Thank goodness they didn't put 40+ candles on this cake!

Katrina and I in the front, Misty in the back/middle..My two precious friends.

Bob, Lindsey and I. I'm not quite sure what or who they are looking at..but you get the idea..it was a fun lunch!

The real reason I got  a cake is because almost every day I have said, "Wow, I really do want a piece of birthday cake!"  So Lindsey and Bob  covertly got with Katrina and Misty--and VOILA!  CAKE!
(They all knew I'd never shut up about it otherwise!)

SO! After lunch outside of Houston, we trucked on in to the Medical Center and I saw Dr. Kim.
He was very pleased with my progress so far.  We are all very pleased.
Yes, I've still got a little bit of pain..as a matter of fact, I feel like my head is raw on one side.
It's pretty uncomfortable, but I have dealt with much worse, so no worries.
My discussion with Dr. Kim resulted in the following:
He says I'm complicated... that's not a revelation..but I was surprised to know he thinks I'm a complicated case.  You see, both Chiari Malformation and Arachnoid Cysts can be congenital-both can be connected to Ehlers-Danlos Syndrome...so it's kind of like a what-came-first-the-chicken-or-the-egg thing  (as a side bar-I believe God created the chicken first..but not sure what HE did with the Chiari-Cyst thing).
If I had syringomyelia like many Chiarians, then that would be more complex, but not complicated.
Complicated could easily be my middle name.
Anyway-
He said if I go a year and a half with no recurrence of symptoms, this was likely a permanent fix.
He said if I go three-four years, we can be sure of it.
He further stated, if symptoms recur, I will have to have a cysto-peritoneal shunt, as opposed to the internal shunts I have now.  The little ones I have now are contained basically in my brain, the C-P  would go from my brain, down through my body into my peritoneum--basically the abdominal cavity.
He is very hopeful this is a fix.
I'm setting my sights on November 2015.  If I can get there with minimal issues, I'll feel like this was successful.

Already, I feel more clear headed, my speech comes more freely, vision has improved and I have improved feeling in my left hand, leg and left side of my face. My hearing is still less than optimal, however, he said that can take awhile to improve, so I'm practicing patience.

While typing this I've experienced two of those horribly painful things I call "brain spasms".  Literally, I feel as though my brain squeezes into a tight ball and it  hurts  so  badly.  I know my pain meds don't help it..but I'm going to take some anyway, get  away from the brightness of this laptop and rest awhile.

I will report more over the next few days..Stay tuned..I'm developing a TOP 10 THINGS TO NOT DO AFTER BRAIN SURGERY list..and how found out they were things to NOT DO!  I will post it soon.

Thank you again for your prayers, support and notes of encouragement!