Sunday, December 28, 2008

What's Your Status?

So how long can I use the 'brain surgery' excuse for not blogging nearly enough? I am way overdue for a status update, right? Well, for starters, the Wii has officially kidnapped my children. They love the Wii Fit games and spend pretty much all waking hours learning new skills. We have all had fun playing the games, although, as you can imagine, I am banned from playing most of them for a great fear of disturbing the healing zipperhead!

Physically, I feel like my strength is returning with the passing of each day. Any pain in my head/neck can be taken care of with some Advil and/or a muscle relaxant if I am having a really tough day. But seriously, I just had brain surgery, shouldn't I be in excruciating pain? Nope ~ can't explain it other than prayers have been answered and I have a wicked high tolerance to pain ~ what a blessing! I am hoping to start driving this week, even if it's a trip around the block. I know that mentally I am coming around because I have started compiling lists of things I want and need to do already.

Many people have asked me if I can tell if my symptoms from Chiari are gone now and my answers are still a little on the vague side. It's hard to tell, but I can say that the vertigo seems to be gone and the crushing Chiari headaches. My short term memory seems to be returning, too. I think I am still existing in the decompression honeymoon phase. How do you go back to 'normal' after brain surgery? What is normal anyway? My main goal going into brain surgery was to survive ~ keep breathing ~ choose life. So, since I seem to have accomplished the basics, now what?

Wednesday, December 24, 2008

O LORD, you have searched me and you know me


I have found it particularly difficult to get into the Christmas spirit this year. All things considered, it's only been three weeks today since I became a zipperhead! This morning when I arose, it dawned on me ~ what is the real spirit of Christmas? The answer is painfully clear ~ the birth of the Lord's only Son ~ JESUS. Personally, I know if it were not for my faith and belief in Jesus I probably wouldn't be sitting here blogging today. Faith and prayers continue to heal me from the inside ~ out. Wishing you all a very Merry Christmas. May you have a renewing of strength and hope this Christmas season.

Psalm 139 New International Version (NIV)

1 O LORD, you have searched me and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you know it completely, O LORD.
5 You hem me in—behind and before; you have laid your hand upon me.
6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence?
8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn, if I settle on the far side of the sea,
10 even there your hand will guide me, your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me and the light become night around me,"
12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
17 How precious to me are your thoughts, O God! How vast is the sum of them!
18 Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.

Saturday, December 20, 2008

By Your Side ~ Tenth Avenue North


The Christmas season is filled with every emotion imaginable. For some, it is a time of sheer joy and happiness ~ for others time of deep sorrow and despair. The song I posted above is a gentle reminder of the true meaning of Christmas. God sent His only beloved son to earth to die and rise from the grave so that we can live with Him in heaven some day.

If you are feeling a bit down and depressed during the holiday season, I pray that you find renewed hope in life. Know that you are never alone. Take a moment to listen to the song I posted above ~

Friday, December 19, 2008

Season of Healing

A friend of mine sent me a really neat e-mail message the other day that really resonated with me.  I have pasted it below. What really got me thinking was the metamorphosis of my zipperhead. If you've been reading my blog, you have seen the picture posted of my newly shorn head. It's been 16 days since my surgery and I have healed so well, my hair is growing back quickly.  I guess what I am trying to say is we all see things differently. 

An innocent web surfer who would stumble upon my picture might gasp in horror at the sight of my zipperhead. But to me, friends and family, who have walked along side me during my chiari journey might view my zipperhead differently.  To me, it's definitely a victory badge ~ a sign of the end of one journey and the beginning of a new, healthier one. A wise friend of mine referred to my scar as 'a line of strength and determination' ~ I really like the sound of that! 

There was an Indian Chief who had four sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.

The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall.

When they had all gone and come back, he called them together to describe what they had seen.

The first son said that the tree was ugly, bent, and twisted.

The second son said no it was covered with green buds and full of promise. 

The third son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen. 

The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfilment.

The Chief then explained to his sons that they were all right, because they had each seen but only one season in the tree's life. 

He told them that you cannot judge a tree, or a person, by only one season, & that the essence of who they are and the pleasure, joy, and love that come from that life can only be measured at the end, when all the seasons are up. 

If you give up when it's winter, you will miss the promise of your spring, the beauty of your summer, fulfilment of your fall. 

Moral: 

Don't let the pain of one season destroy the joy of all the rest. 

Don't judge life by one difficult season. 

Live Simply. 

Love Generously. 

Care Deeply. 

Speak Kindly. 

Leave the Rest to God. 

Happiness keeps You Sweet, Trials keep You Strong, Sorrows keep You Human, Failures keep You Humble, Success keeps You Glowing, But Only God keeps You Going!

Tuesday, December 16, 2008

Blessing In Diguise

OK, finally I was able to get upload images from my 3D CT scan of my head. How surreal is this to get this up close and personal?!!! My intention in publishing this beautiful pic of my head wasn't to freak any of you out, but from a medical miracle perspective.

The C1 vertebrae is the tiny one at the base of my skull. My surgery pretty much did away with that vertebrae, leaving the C2 to hold my head up on my shoulders. Remember how I mentioned that my C2 was freaky big? Well look at it ~ it's bigger than bot the C3 and C4 put together! Talk about a blessing in disguise. Clearly this is a birth defect that I had never known about or seen until now. In looking at the big picture, the fact that my C2 is mis-shapened and clearly overdeveloped, I have a good chance of avoiding the fusion surgery later.

Sunday, December 14, 2008

When Doubt Creeps In


Last night was the first night since my surgery that I can say that I got a good night of rest. When I awoke this morning, for a second, I totally forgot that I had even had surgery.

Shortly after awaking, I stumbled down stairs to make a strong pot of coffee. As I was filling up the pot with water a speck of red caught the corner of my eye. I peered out the kitchen window and saw the most brilliant cardinal perched on a frozen tree in our neighbors back yard. In an instant, I felt the hand of God on my left shoulder and the words, "It's going to be all right!". Then the words of Amy Grant's song, All Right. started playing in my head:
It's going to be all right, you give me what I need ~ That it's all right what may come. What strengthens hope my eyes will never see.
Just this morning as I was washing the misty visions of sleep away, the doubt was seeping in. Making me second guess my decision to have brain surgery. Why in the world would I put myself all of this pain and rehab? Couldn't I have lived with my symptoms forever, learn how to deal with it? And then, the vision of the cardinal ~ bold, scarlet, standing out in sharp contrast against the icy background, clear and inescapable. If you have been following my blog for a while I have mentioned the symbolism of the cardinal many times. Whenever I see them they send me powerful messages right on the spot.
ALL RIGHT ~ Amy Grant

Looking out to the hills
To the setting sun
I feel a cold wind
Bound to come
Another change
Another end I cannot see
But your faithfulness to me is making it
[Chorus:]
All right
I fall down on my knees
Tell me that it's all right
You give me what I need
Years of knocking on heaven's door
Have taught me this if nothing more
That it's all right, what may come
I've heard it said
When the river's running high
You get to higher ground or you die
Well muddy waves of pain
Washed over me
And it only made me see it's gonna be
[Chorus]
When will I learn there're no guarantees
What strengthens hope, my eyes have never seen
But it won't be long
Till the faith will be sight
And the heavens will say
It's all right
[Chorus]

Friday, December 12, 2008

Then, There Was Before Me An Open Door



Hi, my name is Lacie and I am no longer an addict. It's day two of no morphine and even though I still have a wee bit of the shakes my head feels so much more clear. I have been taking Advil for the pain as needed and it seems to be working. It's only been 9 days since my brain lift and I am already bored to tears ~ seriously!


We had a wicked ice storm last night and I was awoken from sleep every hour with the crashing sound of falling limbs. Thank goodness we didn't lose our power. The sleet has changed over to snow this morning and I have to say it's beginning to work on my non-existent Christmas spirit already. I apologize in advance for a scattered blog, but the brain isn't firing on all cylinders just yet. So, apparently I blogged at least once while I was in the hospital. I remember writing, but have no idea what I said. The funny thing was the pulse-ox meter that was on my finger was beeping like crazy the whole time I was tying, because I was supposed to be still. I am still trying to unwind all the thoughts in my brain about all the experiences I went through over the past 2 weeks.


One feeling that was predominant through everything was a sense of peace and calm ~ completely. Prayers were definitely heard and answered. I knew I was being cared by the best of the best chiari docs and had no fear. Even on the worst days I knew that if I just kept breathing I would certainly get through it all. ~sigh ~ So, I can't officially wash my hair until 2 weeks post-op ~ next Wednesday, 12/17 ~ last night John and Mom managed to throw some plastic bags over my incision and were able to wash what hair i have left. The pony tail hair doo is beginning to get very fashionable around here. OK ~ need to lay down for a while ~ more later ~ thanks so much for all the comments and messages. Who knew I had such a big fan club. Love you all ~ send me some ideas to quench this boredom, please ~

Tuesday, December 9, 2008

Checking Out and Heading Home

Sorry for the lack of updates. The last day and a half has been very busy and without wireless access.

Monday morning we were hoping to get discharged from the hospital so Lacie could make her PT appointment on Long Island at 11 a.m., but things did not go quite as expected. Lace woke up feeling dizzy and sluggish and we weren’t sure at first if she was even going to get discharged. Dr. Stasi came by around 9:30 and looked her over. His thoughts were that this was a case of perhaps overdoing it a bit the day before combined with her also going off her steroid medication the day before. We hoped he was right. The hospital PT specialist also met with her and was very pleased with Lacie’s progress.

So, after a few delays, we were discharged a few minutes before 11 and we hustled over to the PT appointment. This took longer than expected as the directions were terrible and a 15-minute drive took almost an hour. By the time we arrived, Lacie was feeling quite nauseous from the drive and needed a rest. The doctor was quite gracious, helping her to lie down in a private room and talked to us about the therapy procedures while she rested. He took her blood pressure and it had dropped to around 60 so she needed some serious time to rest and get her blood pressure up while we waited.

We returned to Variety House for the afternoon and evening and she took a nap and slowly improved enough to eat a little dinner and watch a movie before an early bedtime.

Today she is doing much better. We are departing the Variety House around noon to return to Albany today. Please pray for a safe trip and for Lacie to feel well while we are travelling.

Sunday, December 7, 2008

Sunday Update

Things continue to go well. Lacie had her IVs removed overnight and is now running around completely wireless, which I imagine is a big relief.

Lacie's mom Sandy (pictured) departed late this morning to head back home to help out with the kids for a few more days before we return. She was a huge help while we were here as she and I often split time with Lacie so as to give one another a break. 

We are hoping to be discharged early Monday morning so as to make a physical therapy appt. here on Long Island at 11 a.m. Monday. TCI is now referring their patients to a local PT for one appointment with a PT that they are working with that is trained in Chiari-related therapy. This is great news to us because it seems that most (if not all) of our Albany-area PTs know nothing of Chiari syndromes and how to treat them. The idea is this guy treats her once, shows us what to do, and we bring that information back to our Albany PT to show them what to do. Hopefully they'll even give us some handout materials.

We may also drive back home Monday afternoon as there is some bad weather looming for late Monday night all the way through Thursday. At first they were hinting at a small blizzard, but now it looks like one of those snow/rain messy mixes. I'm sure it could change again depending on the storm track.

That's all for today. Giants lost. Bah-humbug! 

Saturday, December 6, 2008

Walking Tall

Well, as you can see from the picture, at least some of us are walking tall! But seriously, Lacie is doing great and has been out walking laps around the NSCU twice today, two laps the first time, and three the second. She got a sponge bath late this morning and was able to put some regular clothes on, which I think was a big relief. Her mom also combed out her hair and gave it some newfound style.

We are still waiting for a transfer out of the NSCU, which is supposed to occur later this afternoon. The NSCU is short-staffed today and they are justifiably giving more attention to some of their other patients - some of them are in pretty rough shape and most are older or elderly. There is one guy whose head is practically entirely wrapped in gauze - poor fellow! Fortunately, Lacie's nurse today, Linda, is one of the better ones, and she has been in good hands while we wait.

Friday, December 5, 2008

Friday Night Lights

So, as you saw, Lace was feeling well enough to get online for a while and do a brief post as well as review all of your comments. My blogger account does not have permission to post the comments, so they've all been pending for a few days. Sorry about that!

Earlier today Lace was out of bed and walked around the room and out into the hallway just a bit with a walker. She did real well and probably could have gone further but they are being conservative with her because her sodium levels are still a little off and they want to get that corrected before going hog wild with the activity. Also, because her levels were still not where they want them to be, she will be spending tonight again in the NSCU. But we expected 2 days here from the beginning, so no worries. She continues to make good progress and is looking pretty chipper this evening. I am optimistic she will be out of the NSCU tomorrow and she will likely also lose her catheter then and be walking the halls. So, that is a preview of tomorrow.

Also, below are some pics of Lace. The shot of the back of her head is from the day after surgery when they changed her bandage dressings. The other two shots are from today and that is the ace bandage "turban" they've had her wearing all along. Kind of looks a little like Bert (from Sesame Street) meets I Dream of Jeannie with her hair tumbling out the top!!!

Rescued




Just a quick post to let everyone know that John has been reading all of your wonderful comments to me and it's cheering me up a bit. I was incredibly sore and stiff this morning. Pain killers setting in so I had better sign off ~ more later, pressing on ~ Lace

Thursday, December 4, 2008

Wrapping Up Day 2


It's 9:30 p.m. and Lacie is tucked away sleeping next to me in the NSCU. Looks like the staff here has a pretty loose protocol on the visiting hours so I am planning on staying the night. There is a chair in the room that reclines, so it shouldn't be too bad and I hope to maybe get some shuteye myself.

All in all it was a pretty good day for Lacie. She was up out of bed twice and sitting up in the chair (now my chair!) for an hour or so each time. Also lots of neck stretching and massaging throughout the day. She's still not eating much but hope that picks up tomorrow. Nausea has not returned, so that is good. She's very tired as she apparently did not get much sleep last night in the noisy one-room PACU, so I expect her to sleep long and hard tonight.

Not much else to report. I did want to share an odd tidbit with you. I'm sure most of you have seen "When Harry Met Sally," which takes place in the NYC area. There is a scene where Harry is talking to Sally in bed and he mentions a certain cookie. Remember? Mallomars. As a pseudo-Texan, I had never heard of it. I even looked around for them in several upstate grocery stores some years ago and still seem to look for them in passing as the thought of the movie always makes me grin. Well, last night I was in a Long Island grocery store and lo and behold, there they were. And not just a few boxes, mind you, but an entire pyramid-style end cap display full of them! I couldn't help but chuckle a little. They are made by Nabisco, so I don't know why they are not more widely available. But according to Wikipedia, they are sold only in the colder months and likely in more northern regions for reasons so that they do not melt. For those of you who don't know, they are kind of a snobby version of a smore ~ graham cracker bottom, big dollop of marshmallow on top, and the entire thing is dipped in a chocolate shell. Sounds pretty good, huh? 

Good night, and enjoy your milk and cookies.

The Morning After

Sorry, but I did not get a chance to do another post last night. She looked good when we visited her in the PACU again from 7:30-8 p.m. After that we were told we could not see her again until she was transferred from there to the NSCU (NeuroScience Care Unit) the next morning. So we packed it up and went back to Variety House for the night. I had a couple errands to run for Lacie, picking up a special pillow and some drinks so I did not get "home" really until after 10 when I hurriedly made a few phone calls to family and scarfed some dinner before turning in.

We arrived at the NSCU at 10 a.m. when visiting hours "officially" start. She was pretty groggy and nauseous from the anesthesia when we arrived but that quickly improved. Dr. Verma visited us first and changed her dressings and showed us how to stretch, massage, etc. to increase her mobility. Dr. Kula came by shortly after that on rounds. He is the neurologist from TCI. He seemed pleased with how she was doing. They gave her something more for the nausea and that passed shortly thereafter. 

Around noontime they moved her out of the bed and she is now sitting up in a chair and getting more active. She is now working on an exciting lunch of Coke and cherry italian ice. 

All to report for now.


Wednesday, December 3, 2008

A visit to the PACU

FINALLY, at 5:30, they called us to the desk for a brief visit to see Lacie in recovery in the PACU. 10 hours after she went in for surgery. She looks great. She was asleep when we arrived but quietly talkative in a few moments and in good spirits, all considered. Compared to her last surgery, she really does look great. Last time she had a terrible allergic reaction to the tape they put on her face and that combined with her laying face down for the surgery, she was quite puffy for a couple days. But this time she is showing only a minimal amount of swelling so they must have done something different. She will be very happy about that come tomorrow. She can then spend more time fussing about her hair instead!

We will get one more visit tonight between 7:30-8, which is general visiting hours for the PACU. She will be staying there overnight (with no visitation allowed) and tomorrow morning she will be moved to a "step-down" room for the next two days which is a private room where she'll have more care than in the regular part of the hospital and we will get to see her as much as we want.

I'll give another update later this evening after the next visit.

For Lacie

Good news from John! We all continue to pull for Little Lacie, for a successful surgery and a full and speedy recovery.

I'm starting to get names and thoughts for Lacie on the "wigs4lacie@yahoo.com" email address. Thank you all! I started a group for Lacie in Facebook - if you have a facebook account - go join it!

Some have suggested hats or hooded sweatshirts. I think both are great ideas! Let me know if you are interested!

God Bless, and lets keep the good Lacie vibes coming!

Report from Dr. Milhorat

Good news, Dr. Milhorat just came out to the waiting area and spoke with Sandy and I about the surgery. The hard part of the surgery is now over and they are just finishing stitching her up. She should be out and ready to see in an hour or so.

The surgery went very well. They did not have to remove as much material as originally anticipated. In fact, they left her c2 pretty much intact, removing primarily a section of c1 and portion of the skull. he also cauterized the cerebellum tonsils a significant amount. All in all, he felt like her CSF flow from the spinal column to the brain has been very much improved and is very optimistic about her recovery. Thank God for these good blessings! And thank you everyone for your continued prayers!

There is still some concern about the cranial settling that is caused by her Ehlers-Danlohs Syndrome, but since her recent low bone density scan prevented her from having the spinal fusion done, all we can do is wait and see. It may be fine he said, only time will tell.

I will post another update around mid-afternoon after the surgerical procedures have officially ended and we have seen Lacie.

The long wait

So. Here we are. There's really not much news to post, but figured I owed y'all at least an update. Lacie is currently in surgery. We (Lacie, me and her mom Sandy) arrived at the hospital bright and early at 5:30 a.m. Surgery was scheduled to start at 7:30. Everything pretty much went to spec with the nurses shuffling Sandy and I out of the pre-op area at around 7:15 so they could get Lacie into motion.

We checked into the surgical waiting area and here we wait. The waiting room is really nice. Last year it was under construction so we were in an older space, but this year the new space is open and everything is comfy and new. Carpet. LCD TVs. Wireless. PC available. Free coffee. We were issued our pager at around 8 a.m. (they page you shortly before the doctor comes out to give you the update after surgery) and we went downstairs for some breakfast and a stretch of the legs.

Not much else to report other than we expect her to be out of surgery sometime around 2 p.m., so check back sometime shortly thereafter for an update. Keep those prayers a comin'! Compared to last time we were here, both Lacie and I were remarkably at ease with the situation when she went into surgery. Prayers are working. And we know she is in good hands.

Tuesday, December 2, 2008

Update from Lacie ~

The last couple of days have been a whirlwind! On Monday morning, I had about an hour of MRI’s followed by pre-op stuff at the hospital. In the afternoon I had a couple of appointments at TCI. I have been feeling the prayers ~ keep them coming. I am seriously humbled by the effect of prayer. I have felt totally at peace, no nerves what so ever. I am actually feeling a bit giddy ~ finally I have arrived for brain surgery and I am looking forward to getting this all behind me.

We were in and out of TCI in a record hour and a half ~seriously wonderful. After my nurse practitioner took my vitals she walked me in to meet with Dr. B. It was so nice to sit down with him and chat about my surgery. I really haven’t spoken with him since my initial visit back in May of 2006. He answered all my questions and outlined how the surgery would go. Seeing pics of my 3-D CT scan were really cool. Something Dr. B pointed out to me was that I have freakishly large C2 ~ can you see my shocked expression? Anyhoo, having this large C2 is a great advantage, because it will help hold my head up after the decompression. Dr. B decided to go ahead with the invasive cervical traction to see if I could benefit from the fusion in the future.

So, I was instructed to not have anything to eat or drink after midnight on Monday. When I got to the hospital at noon for my same day admission they couldn’t find my name on the list. After a couple of phone calls my docs were located and my procedure was confirmed for 1pm. As I was getting into my oh so stylish green hospital gowns the fire alarm went off. The nurse came over and said not to worry, there was smoke located in the building, but thankfully not in our area of the hospital. So, I walked down to the OR, when I got there they had discovered that the bed didn’t work and were in the process of switching it out. I answered a bunch of questions with the anethesiogist while he was putting my IV in. Once they were ready to go I got some Twilight put into my IV and I was unconscious for a couple of minutes. When I woke up they started putting weights on the traction unit. Basically I had two screws in my temples with a big bucket handle attached. It took about 25 lbs of weights before I felt any relief in my headache. So, that said, I have cervical cranial instability and would benefit from the fusion surgery at a later date.

Thanks so much for all of the e-mails and well wishes, I had no idea what a big fan club I have! John will keep you posted as the day progresses tomorrow and I will be back on line as soon as I can type. See you on the other side of decompression.

Monday, December 1, 2008

And... we're back!

Hi. John here. Just wanted to do a test post and make sure this is all working fine and dandy before the big surgery Wednesday.

Not much exciting news to report, which I guess is a good thing! We drove down yesterday afternoon and stopped and had a really nice lunch with Darla and Bobby, our new fellow Chiarians from the New Paltz area. Darla had her mini-PFD and spinal fusion about a month ago. She looks great and is doing so well ~ she is truly an inspiration to us. Her spirits are great and it is so invaluable to both Lacie and I to have found a new friendship in this strange but wonderful bond we have through the Chiari community. 

The traffic was utterly horrible on the way down. Note to self (and all readers!) - do not attempt to travel the NYS thruway south on the Sunday after Thanksgiving if it can be at all avoided. I think there were more license plates on the road from NJ, CT, & PA than NY! After getting off at Newburgh exit for our lunch get-together, we took a tip from Bobby and cut East on I-84 to I-684, which takes you down to some other highways that eventually patch you into I-278, which brings us into Brooklyn where we had a relaxing supper with the Dawsons, who were also kind enough to put us up for the night. Thanks to Bobby for the driving tips. Other than one bottleneck at the end of 684, it was pretty smooth sailing.

I'm currently in the Pre-Admission Testing area where Lacie is doing paperwork and other pre-op related stuff. We had the MRI earlier this morning. After this, we are off to check in at Variety House, then a quick lunch and over to TCI for an afternoon appointment. If history dictates, TCI will likely suck up the rest of the day like a nail in an expiring radial tire. Any of you who have been there before know that they always seem to be understaffed and behind in the daily schedule. I think we waited over 3 hours there the first time. But it is worth the wait, and we thank God that He has led us there. 

Friday, November 28, 2008

We Could Do Something Big

I just love the way Chandler and Joey think ~ they get all fired up about doing something big like climbing Mount Everest ~ then reality settles in and it's downgraded to renting the DIE HARD DVD! Well ~ me, when I say I am about to do something monumental, I am all about the follow through. Brain surgery, let's do this thing, now! Less than five days and I will be on my way to being on the other side of a PFD. Not to be confused with a personal flotation device ~ lol!

Monday, November 24, 2008

Random


I know this is totally random ~ but these pics just made me laugh and I wanted to share with you!

Friday, November 21, 2008

Kilimanjaro


A very wise chiari friend of mine told me that when she was getting ready to have her brain decompressed she planned her dream vacation. That way, when she was feeling miserable she would have something to look forward to. She suggested that I do the same. The task at hand is harder than it might sound. All of the 'road blocks' immediately come to mind trying to squash my dream like an unwelcome bug before it's come to life! Where will I come up with the money for a trip? How will I take the time off? Will I ever be healed enough to do what I want to do?

One of my dreams is to summit Mt Kilimanjaro. I was intrigued when I read Seven Summits a couple of years ago. I am fascinated that you start out in the rain forest and end up in Arctic like conditions on the summit. The book I am reading, Learning to Breathe, Alison Wright, the author's dream when she is recovering is to summit Mt Kilimanjaro on her 40's birthday. Just the other day I saw the story about Ann Curry climbing Kilimanjaro, too ~ coincidence? So ~ yeah ~ Kilimanjaro's on the list. I guess the biggest question is who can I wrangle to go with me on the journey? Any volunteers?

Tuesday, November 18, 2008

Guest Blogger is Back

Hi! For those of you not familiar, I'm Lacie's friend Erica from several jobs ago, almost several lifetimes ago. We went on a crazy road trip in the middle of Pennsylvania to see the X-Files movie together. I'm a big fan of Korean Drama and a still bigger fan of my three kids. Lacie, who can be as obsessed and as kooky as I, is a dear friend.

But if you are a friend of Lace's you understand that she is one of those people who makes connections and is fierce about keeping those friendships and maintaining them.

I've written about Little Lacie of the Enormous Brain a few times on my blog. Lacie is probably my most avid comment-writer, and being the comment and hit whore I am, it is always appreciated.

Many have been privileged to read and be part of this tiny little woman's incredible journey. Out of her generosity, and let's face it, her need to make sense of this whole process, she let us in. I've known her for, I don't know, going on 10 or 11 years now, and the way she has carried herself throughout has been an inspiration to me as I know she has been an inspiration to countless numbers.

If you are a regular to Lacie's blog, you will know that she is going in for her surgery the beginning of December.

Today's request/plea though is this: I want us to buy Lacie some wigs. She has resoundingly approved of this idea and fully intends to wear whatever we buy her. Maybe I can get her to take pictures after so we can see how well they suit her.

We can get some lovely things here at a very reasonable price, or you can be more conservative here, but slightly more expensive. While I may look for something in a Scully fashion, I might decide to pander to Lacie's geekier side and get The Matrix Twins Wig. :)

Here's what I would like you to do: if you want in, if you want to in some small way, help support this beautiful woman who has inspired and moved us, email me at wigs4lacie@yahoo.com. I will coordinate the types of wigs so there is no duplication, tell you where to ship them to make sure they get to Lacie so she can smile and feel your love. If you can't afford a wig, which is cool, email me and I'll collect cards, letters, emails, and love for her and deliver them in a happy package to her door.

Cards and words of encouragement for her husband John would be a great idea too. I know what it's like to have a spouse in the hospital. I know what its like to carry the load at home, caring for the kids, working, rushing to the hospital, and worrying all the time.

Let's show Lacie and her family how much she has touched our lives, while she Lives Loves and Laughs.

Sunday, November 16, 2008

United As One Team ~ Reaching For Our Dream!

What whirlwind of a weekend! Friday night we took the girls out of school around noon and headed down to New Jersey for the Eastern Regional Cheerleading competition. We were all decked out in our silver, blue and white ~ cow bells and banners in tow. Hannah's Jr Pee Wee Large team did awesome ~ we are so very proud of her and her team for going out there and giving it their all! Out of 15 teams, we placed 4th ~ we missed our Disney invitation by two places. There were lots of tears shed ~ the girls really had their hearts set on Disney, but I know that we will get there next year!

On the way home we stopped in a quaint little New Jersey town and had a late lunch with a friend from high school. It's been so fun reconnecting with long lost friends ~ you know, life is just too short not to! When we headed back home we drove right through a band of heavy rain and tornado warnings. My head was feeling like it was going to explode by then and I just couldn't wait to get home and get in bed! Today we are staying around the house to relax. Did I mention that there is snow in the forecast for the next couple of days? Seriously, just yesterday it was a balmy 73 degrees!

Wednesday, November 12, 2008

The Bison ~ Are Back ~ And Ready To Compete

It's that time of year ~ again. Hannah's cheer squad is competing in the Eastern Regional competition on Saturday morning. The team has improved 500% from last year and have really kicked it up a notch in their routine. I am so very proud of Hannah! She has worked really hard to perfect her cheers and routine and it really shows! Her team will be competing against 14 other squads ~ reaching for a team invitation to the national competition at Walt Disney World in a couple of weeks. They will only take two teams to move on to the final competition.

Did I mention that WHEN they go to Disney and compete ~ December 8th ~ there's a huge chance that I will still be in the hospital recovering! What are the odds? Well last time I was connected to a morphine pump the GIANTS won the Super Bowl! Wish us luck ~ it's going to be a big day ~ I can feel it! GO BISON!










Tuesday, November 11, 2008

Ducks In A Row????


The last 24 hours have been an emotional roller coaster. I sent off my short term disability info to be filled out for my upcoming surgery and found out that the RN who is taking care of my case at TCI is out of the office. Ok ~ I can roll with that ~ sent my info along to the person who is covering for her. I received an heart attack worthy e-mail yesterday that basically said that they couldn't fill out my paperwork, because I had not seen a doc at TCI in over 6 months. GULP!!!!

Needless to say I had a moment or two of panic last night. Holy HEAT ~ does this mean they might cancel my surgery??? They specifically told me that I didn't need another appt before my surgery ~ OI!!! So I fired off an e-mail with all kinds of questions for said representative asking what can I do to remedy this problem. This morning I received a call from TCI. I recognized the area code on the caller ID at once. Before answering the phone I took a deep breath and just turned over the whole situation to God. Seriously ~ what else could I do?

So it turns out, the woman I spoke to didn't even know that I was scheduled for surgery in 21 days ~ she couldn't even locate my file!!!! So I filled her in on the details and what was going on with my case. ~ sigh ~ I even offered to find the paperwork that was filled out earlier in the year for my detethering so that she can duplicate the info on the current forms. I feel so for everyone who works at TCI. They seemed so over worked and under appreciated. I know their patient load is hard to keep up with. So, for now, the train seems to have avoided a derailment. I just hope they locate my file before I get there so that there isn't any confusion.

Earlier today I was listening to a song I first heard when I was in college ~ Higher Ways by Steven Curtis Chapman. Again, the lyrics really touched me, softened my heart and changed my attitude that had become bitter last night.

Take a listen for yourself and see if it has the same effect on you ~

If I could only fly
I'd go up and look down from the sky
So I could see the bigger picture
And Lord if I could sit with You
At Your feet for an hour or two
I'm sure I'd ask too many questions
'Cause there's so much going on down here
That I must confess I just don't understand
But I have prayed
And at your feet my whole life has been laid
So I wont worry I wont be afraid
'Cause my soul is resting on Your higher ways
Let the road ahead become unclear
I am Yours so what have I to fear
If my soul is resting on Your higher ways
CHORUS
Your higher ways teach me to trust You
Your higher ways are not like mine
Your higher ways are the ways of the Father
Hiding His children in His love
So let it rain
And if my eyes grow dim with tears of pain
This hope I have will not be washed away
'Cause my soul is resting on Your higher ways
Maybe then You will take me aside
And show me the bigger picture
But until I'm with You
I'll be here with a heart that is true
And a soul that's resting on Your higher ways

Sunday, November 9, 2008

Steep Climb Up Ahead

I am all for mental preparation ~ If there's something I have committed to I want to know what to expect. My experiences in the past have gone well when I have faced a dark situation with this attitude,
Hope for the best, but expect the worse.
I know, it sounds a little pessimistic, even for me, but it's the truth. With that said, my sister gave me a book (Learning to Breathe, by Alison Wright) for my birthday that has been a great inspiration to me and I am only half way through the book. It's a story about a photojournalist who found herself in a almost fatal bus accident in a foreign country. I won't give away the whole plot, but she was a breath away from death and chose to live and fight through her injuries to live.

Last night I read a sentence that really resonated with me ~
"Even in the darkness all we can do is keep moving forward."
This reminds me that all I have to do is just keep putting one foot in front of the other and eventually I will find myself no longer in the inky darkness of pain. How's this for perfect imagery, yesterday was cold, windy, rainy, overcast, the sun never came out all day. A super dreary New England day. This morning I awoke to a brilliantly shining sun, crisp, cool air. Even after the darkest night the sun will rise in the East.

So, I am off to church this morning, then Skyler's b-day party followed by the Giant game ~ Hey, anyone out there following college football? How about my Texas Tech Red Raiders!!!

Thursday, November 6, 2008

Happiness Is...

I am learning to find joy in the little things ~ anything to shed light on this narrow dark path. Reconnecting with friends on Facebook has brought me more joy that you can possibly imagine. So ~ what do you say to a friend when you are reconnecting after 20+ years? How do you sum up all those years since high school, since camp, since college?

It's a fine line ~ the boundaries between the safe answers and the raw, ugly truth are fuzzy. I am a straight shooter, maybe it's the Texas blood that pulsates through my veins. It's incredibly hard for me to BS my way through a conversation without mentioning the only thing on my mind, "Hey ~ did I tell you that I am having brain surgery in a couple of weeks?" There is no smooth transition. I find myself not sharing with some, because I know that they won't know what to say in return ~ what do you say? But seriously, it's still me ~ just because my brain is sliding out of my head doesn't define me completely. Although, it has put a damper on my bubbly personality.

Therein is the beauty of friendship ~ those who really know me offer prayers, support, a shoulder to lean on. Friends share life's joys, disappointments, sorrows ~ that's the glue that binds you. Life is messy ~ TRUE STORY ~ no matter what you are going through, no matter how dark and scary, know that if we are friends I will be there for you, no matter what might come strolling down your path. Don't be afraid to share your life, let someone join you in your journey. It makes life more bearable to have a friend walking by your side.

Wednesday, November 5, 2008

Hope Now ~


Time has been speeding up for me. My chiari friends have told me on numerous occasions that as my surgery date draws nearer time will speed up. So true and the last couple of months have been a blur. It's like I am on some kind of souped up auto pilot. Sure, I am pretty functional ~ I get my work done at work, keep up with house chores; but I feel as though i am walking around in someone elses body. True Story!

I am trying to stay focused with the tasks at hand for each day ~ it keeps my mind occupied. Although many thoughts take me away from focusing on the Lord, I am quietly reminded with words of encouragement that I am His ~ He is in control. It's a daily struggle ~ surrendering over and over again my fears and anxiety over brain surgery. oi!

I wanted to share the lyrics below of a song that has lifted me up.

Hope Now ~ Addison Road

If everything comes down to love
Then just what am I afraid of
When I call out Your name
Something inside awakes in my soul
How quickly I forget I'm Yours

(PRE-CHORUS)
I'm not my own
I've been carried by You
All my life(

CHORUS)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

When my life is like a storm
Rising waters when all I want is the shore
You say I'll be ok and
Make it through the rain
You are my shelter from the storm

(PRE-CHORUS)

I'm not my ownI've been carried by You
All my life

(CHORUS)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

(CHORUS 2)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

You've become my hearts desire
I will sing Your praises higher
Cause Your love sets me free
Your love sets me free
Your love sets me free





Thursday, October 30, 2008

Where Did Autumn Go?


Do you ever feel like you are running so fast to keep up with things only to find yourself standing still? We had our first snow storm this week ~ big, wet snowflakes. Chiari really messes with my memory, I have an extremely hard time remembering what the date is ~ seeing SNOW fall in October is really confusing! So in an attempt to see things positively, I am praying that we get enough snow fall before my surgery date so that I can go snow shoeing at least once ~ is that so much to ask?

Last night we finally carved our pumpkins and roasted the seeds ~ seriously ~ is it really Halloween already? Time is just flying by!

Sorry for my lack of blogging, my laptop is out of commission and quite frankly I haven't been feeling very well lately. I guess this is a good sign, confirmation that I definitely need surgery and soon. Each headache is taking me one step closer to my decompression...

Monday, October 20, 2008

Chiari Anatomy 101

I have known about Chiari only since September 2006 ~ yet it seems like a lifetime. I try to stay on top of reading other chiarian blogs and doing research on the internet ~ I came across this neat picture that visually shows you what a brain tail looks like from a bone/brain perspective.
What you are looking at is the back of the head. The cerebellum is supposed to be above the foramen magnum, but a person with Chiari, like myself, has brain matter herniated down through the foragmen magnum into the spinal column. This picture shows what the head looks like after Posterior fossa decompression surgery. The surgical procedure removes bone at the back of the skull and spine so that the brain tail has more room to hang out. Well that's my attempt at a non-medical explanation anyay. I am still hoping there's room in there to request for a memory upgrade during my surgery. Maybe they could upload a kung fu program ~

Wednesday, October 15, 2008

Cause when I am weak your strength is complete



It's times like this where I can't find the words to express what I am feeling ~ it's been just all too overwhelming this week. But then I hear a song on the radio and the lyrics seem to speak for me to interpret what's going on in my heart. Something I am learning is that the more things seem to unravel in my life the message that God is sending me becomes clearer. HE continues to provide, continues to sustain me, holds me up, lifts my spirits. I am in awe ~ speechless.

Sufficient - Adie Camp

Hear my heart Lord as I cry out to you

Hear my prayer Lord and carry me through

In your mercy in the promise you made

Be my strength Lord when my strength fades away


Cause when I am weak your strength is complete

It's perfect

Completely all I need

Sufficient for me

Your grace and peace are perfect

Completely all I need


You're all that I need

In my weakness I'm finding your strength

In my sorrow a gentle embrace

Through the seasons of laughter or pain


You are listening When I call out your name

I'll find you when I seek I'll look for you with all of my heart

And I'll find you when I'm weak

Cause you are strong

Hear my heart Lord as I cry out to you

Hear my prayer Lord and carry my through

Carry me through

Sufficient - Adie

Monday, October 13, 2008

New Discoveries Awaken the Muse

There's nothing like the shock and awe factor to awaken the Muse from her slumber. ~Sigh~ Thanks for all the happy birthday wishes ~ they really made my day. The picture above was the only thing I could think about today. The shock has worn off ~ WARNING ~ if you put your daughter into an MRI machine to capture pictures of her brain, prepare yourself for what might be revealed.

That's Skyler's brain ~ recognize the all too familiar brain tail in there? Hers is minimal ~ 5-6mm herniation. Actually, we haven't even received the official phone call from the doctor yet. I was finally able to open the MRI disk that the hospital gave to me. I immediately e-mailed my pediatrician to see if she had heard anything from the neurosurgeon yet and she confirmed my suspicions.

More later ~ I just wanted to let you all know what's going on on my lil speck on this planet. I keep reminding myself that God doesn't give us more than we can handle. More will be revealed. I just thank God that I know what Chiari is and will make it my mission in life to prevent Skyler from having any kind of brain surgery.

Wednesday, October 8, 2008

Happy Anniversary

Today is my 14th wedding anniversary ~ seems like only yesterday ~ I still remember the day this picture was taken back in 1992. I recall thinking how in the world did I find this amazing man in Lubbock, TX of all places. Some say that a picture is better than a thousand words ~ if it weren't for the incredible brain fog I am having today I would ramble on about something quite sappy ~ There are so many things I would like to say but the words just aren't finding their way on here.



Monday, October 6, 2008

I Can't Brain Today

My brain tail has totally stolen my muse again and replaced it with a swirling, vertigo brain. This slogan ~ I can't brain today, I have the dumb ~ is perfect since I walk around daily in a thick brain fog ~ but the sad thing is, I often scramble the words and it comes out ~ I can't dumb today I have the brain!

I am counting down the days til I go in for surgery! Trying to keep myself busy with life ~ taking it one day at a time and trying to remember what day it is ~ what planet I am on. The girls have their cheerleading competition this weekend ~ a fun filled day of loud cheerleaders and blaring music ~ ooo ooo ~ can't wait. Seriously, I do enjoy watching them perform but could really do without all the activity surrounding the event.

Thursday, September 25, 2008

Finding Clarity Through the Fog

I was driving into work this morning at 6am. It was still a little dark outside and the river road I drive on was shrouded in fog. What images/thoughts come to mind when you think of fog? Does it bring up feelings of fear or dread? For me, I feel energized and inspired by fog ~ I don’t know where the feelings come from ~ but hear me out.

As I was driving along, the imagery of a foggy road actually shed some light on a dark place in my heart. I think of life lessons in parables ~ when you can’t see the way, slow down, be on alert, follow the lines, and use your low beams. Even though putting on your high beams might seem like a good idea ~ yeah ~ more light means I can see better ~ wrong ~ the high beams make the light reflect right back in your eyes and then you can’t see at all.

*Sigh* ~ message heard loud and clear. I’m not going to know what’s just around the next corner and that’s just as it should be. Follow the lines on the road (the truth in scriptures) and enjoy the experience of traveling through a cloud! Just ignore the fact that the brain fog has totally taken over...

Wednesday, September 24, 2008

Ah ~ yeah ~ still in a place called VERTIGO

So, what's a girl to do when vertigo comes over for happy hour and decides to stay a while!? Any ideas ~ I welcome them all ~ SERIOUSLY ~ so over the vertigo. I would like to know when vertigo is planning on leaving ~ any time now is good for me! Make sure your stare at the picture above, at least long enough to feel what I have been feeling.

So ~ last weekend was the first ever conquer chiari walk across America. I haven't seen the total numbers of how much was raised on that day, but here in Albany, NY ~ we raised $6,000 just on the day of the event. That's not counting online donations. Thanks so much to all who donated! I was blown away by the number of people at the event ~ over 200 came out for the walk. Even though the walk was a brief lap around the park, the chance to get together with other brain tails was priceless. It was so awesome to finally meet one of my blog buddies ~ D. Hall ~ (that's D. in the middle and a new chiari friend, Nancy) please lift her up in your prayers as she is having surgery on 9/30/08.

My Brain Tail discovery day is coming up this Friday, September 26th ~ it's been almost 2 years since I was diagnosed with Chiari. The friends I have made on line through my blog and yahoo chiari groups have meant the world to me. It's like the Sisterhood of the Traveling Brain Tail. We instantly have a bond and even though Chiari manifests itself differently in each person ~ we understand what it feels like. The support has been encouraging and downright sustaining at time s when I just wanted to curl up and hide under a rock. I laugh and make fun of all my crazy symptoms, but deep down, I am so ready for my real life to begin. Why me ~ why now ~ like my Mom said today, "There has got to be a pony in there somewhere." My response was ~ "Make that a unicorn disguised as a zebra!"

Some of you have asked how I have been feeling ~ truthfully ~ it's been bad lately. Probably worse than I remember pre de-tethering. Between the increasing brain fog, vertigo and headaches, I am kicking myself for scheduling my surgery so far out. December seems months away. I am trying to take it day by day ~ try to look forward to something that will distract me from the harsh reality of brain surgery. Thank goodness for our DVR and all the season of show starting ~ escapism rocks!

Before I sign off ~ I do have a bit of good news ~ my youngest daughter, Skyler, had her consult appointment with a neurosurgeon yesterday. The hair rose up on my neck like a porcupine's quills when we entered the doctor's office. You see, this is the same practice where 'the godfather' practices. Here's the link if you don't remember ~ http://livelovelaugh-lace1013.blogspot.com/2007/07/is-it-there-if-you-cant-see-it-on-mri.html. So bizarre for me not to be the patient this time around. Anyway ~ to make a long story short, absolutely adore the doc ~ very sincere ~ he ordered a full MRI ~ brain to spine for Sky. Her MRI is on 10/9 ~ pray that we get through it without sedation. I want the truth to be revealed. Clear answers so that we know what to do next. Of course we aren't planning on moving forward with any treatment for Sky until next summer at the earliest. I can't even go there right now ~ but knowing what I know about EDS ~ Chiari and Tethered Cord ~ I have to make sure that my children don't have to go through brain surgery, too.

Random ~ anyone out there watching the new show on FOX, The Fringe? So love it already ~ can't wait for Grey's Anatomy to start tomorrow ~ it's the little things that make me smile.

Wednesday, September 17, 2008

A Gathering of Traveling Brain Tails

Just a quick note to let you know that I haven't fallen of the face of the earth, although, there have been moments when I thought that might actually happen! Seriously ~ having vertigo for 4 days straight can get old pretty fast. Think Jack Sparrow sauntering around ~ searching for more rum and wondering why all the rum is gone!

For the past year I have been in conversation with the local newspaper to try and get an article out about chiari to boost awareness. Finally, my contact there has printed a small story about the upcoming Conquer Chiari Walk Across America taking place in Albany, Washington Park at 10am this Saturday. You can read the article if you click on this link ~
http://timesunion.com/AspStories/story.asp?storyID=721409.

More later ~ I know ~ I am sooo behind on blogging ~ I will make up for it soon.

Wednesday, September 10, 2008

The World Is Changing

I woke up this morning with a palpable feeling of sorrow. The heaviness has completely enveloped me ~ I feel as if I am wading through warm quicksand. 9/11/01 brought catastrophic loss to many families ~ their profound grief is felt around the world as we all remember those who lost their lives 7 years ago tomorrow. I pray that as time passes the grief is replaced with a renewed hope in those who were left behind. Love heals all.
Galadriel: The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air. Much that once was is lost, for none now live who remember it.
http://www.stobiepiel.com/midis/world.wav

Monday, September 8, 2008

God is in sovereign control over the difficulties and the pain


I read this on a fellow blogger's post ~ I tried cutting sentences out that really spoke to me ~ but truthfully ~ the whole excerpt really spoke to me in a moment when I really needed encouragement to be thankful in all circumstances.

Jerry Bridges' message found as chapter 1 in the Stand book. Here's an excerpt...
...Lamentations 3:38 says to us, “Is it not from the mouth of the Most High that good and bad come?” That is, God is in sovereign control over the difficulties and the pain just as much as he is in control over what we would consider to be the good things, the blessings of this life. Now we should thank God for the good things of life. We are to be thankful people. But what about the bad things, the things that we would not choose to have in our lives? Paul tells us in 1 Thessalonians 5:18 to “give thanks in all circumstances,” and then he adds, “for this is the will of God in Christ Jesus for you.” That is to say, it is the moral will of God that we give thanks in all circumstances....
How do we do this? We do it by faith. We don’t just grit our teeth and say, “Lord, I don’t feel thankful, but you said to give thanks, so I’m going to give you thanks even though I don’t feel thankful.” That’s not giving thanks. We do it by faith. We do it by trusting in the promises of God. We do it by faith in the words of God through Paul in Romans 8:28–29, where he says “God causes all things to work together for good to those who love him.” And then he defines the good in verse 29 as being conformed to the likeness of the Lord Jesus Christ. This is what God is after.
He wants to conform us to the likeness of Christ; so he brings or allows these various circumstances, circumstances that we ourselves would not choose. He brings them into our lives because he wants to use those circumstances in his way to conform us more and more to the likeness of Christ. And so by faith we can say, “Lord, I do not know what particular purpose you have in this difficulty or this pain, this trial. But you said that you will use it to conform me more and more to Jesus Christ, and for that I give you thanks.” So we give thanks by faith. "
Stand: A Call for the Endurance of the Saints, chapter 1 "Four Essentials for Finishing Well" by Jerry Bridges, page 34.

Sunday, September 7, 2008

Conquer Chiari Walk Across America

This year on September 20th is the first ever Conquer Chiari Walk Across America. I am going to participate in the walk along with my family and other chiarians in the area. I am looking forward to meeting some friends and sharing stories with others on how chiari effects our lives. My hope is one day to find a cure ~ but until then we can raise chiari awareness and raise money to support research for a cure. The NY state governor has officially made September 2008 Chiari Awareness Month! If you are interested in joining us on 9/20/08 ~ just leave me a comment and I can send u the details

OK ~ I admit it ~ I totally hate asking for support, it's just my nature, but if you feel like sponsoring me, you can click on this link ~ to so so. The money is going towards a life changing cause! You know those neat "Stand Up 2 Cancer" ads that are out there right now ~ my dream is for people to stand up 2 Chiari. You mention cancer and immediately everyone knows ~ big deal, serious disease, right? Well most of the time when I mention Chiari people squinch up their noses and say, "What's chiari?"

WHAT? A series of coordinated Chiari walks held at the same time across the country.
WHERE? It is our goal to have at least one walk in each of the 50 states. Clock on this link listing all of the walk locations. Locally: Albany, NY
WHEN? Saturday, September 20th, 2008. September has been named Chiari Awareness Month in several states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.
WHY? To raise awareness of Chiari; to raise money for vital research; and to get people involved.

Wednesday, August 27, 2008

Just Throw It To the Cat


I was doing some homework last night, viewing the latest Tethered Cord video hosted by my brilliant surgeon, Dr. Bolognese at TCI. Skyler has an appointment with a neurosurgeon in late September to discuss the possibility of a tethered cord diagnosis and I want to make sure that I have a great deal of ammunition. You can watch the video by clicking on this link (Chiari TCS) http://www.chiariinstitute.com/Videos/index.html 

So what's up with the cat reference? Dr. B made a reference in the video to the filum terminale (a slender, threadlike prolongation of the spinal cord from the conus medullaris to the back of the coccyx) ~ basically the filum is connective tissue and is not a nerve structure (does not conduct electricity), loosely anchoring the spinal cord to the spine. His humor is so dry and totally unexpected from a neurosurgeon ~ he says that if you cut the filum terminale and throw it to the cat then you will be fine. LOL ~ What a great illustration! Amazing how such a harmless piece of connective tissue can cause so much damage!

He goes on to explain that if you have a boat anchor with a rope that is too small there will be some tilting of the boat. Love the way he explains things so simply so that you can understand what is going on. My instincts are telling me that Sky is wired the same way as me and I am praying that by having her detethered at an early age she won't ever have to have brain surgery. Praying that the tethered cord is obvious and visible so that there is no question that she has it.

Monday, August 25, 2008

Endless Thundering Motion

What is it about the endless thundering motion of the ocean that seems to wash all my cares and worries away? As soon as I can hear the sound of the surf, they become a vapor, a distant memory almost instantly. How can a force of nature have such healing powers over me?

Each summer, we make the pilgrimage to Cape Cod ~ usually we rent a house with family and friends and stay for a week. This year we are doing a quick weekend trip and we are going to experiment with roughing it, tent camping style. We plan on keeping it simple ~ tent, sleeping bags, bathing suits and don't forget the boogie boards.

I remember this time last year, walking along the beach, gathering a collection of rocks that resembled brain tails ~ thinking, this time next year, just possibly, I might be done with the whole brain surgery thing. Time seems to have a mind of it's own. Lately, my watch is literally speeding up with each day. I just reset my watch a month ago and it's already verging on being 20 minutes fast. I see the irony ~ time is speeding up ~ even though December seems a long way out there, time is flying by ~ seriously moving...

So ~ I am really looking forward to vacationing with the family this Labor Day weekend ~ praying that I am as pain and vertigo free as possible. Hoping for renewed strength and insight ~ cast my worries to the wind and let the ocean do it's job ~ restore strength and hope.

Wednesday, August 20, 2008

I WANT TO BELIEVE

Several weeks have passed since I drove three hours to watch I WANT TO BELIEVE with my sweet, uber X-Files nerdling friend, Erica. She posted her review of the movie last week ~ brillance, I tell you ~ I can't even aspire to match her post ~ so if you care to read it ~ click on this link. I had expectations of this highly anticipated movie, but I knew that no matter what I would absolutely love the big screen reunion of Mulder and Scully.
I became an X-Files believer quite by accident. It was a Sunday night, we had invited some college friends over for dinner. They had great concern about what time exactly we were eating dinner ~ a hidden agenda was highly suspect. After a little prodding we found out that the X-Files season 3 finale was on TV that night. At the time we had never watched the show. After our friends shared their enthusiasm for the X-Files we agreed to eat dinner early so that we could fully devote our undivided attention to the finale episode together. Needless to say, we were hooked with just one introduction to Mulder and Scully.
I remember going through XF withdrawals for a long time after the show ended. I missed the Mulder and Scully weekly banter, quirky Mulderisms, their incredibly deep soul connection with one another. The government conspiracies, UFO and alien chasing plots were entertaining, but the ones that most spoke to me were the plots where Mulder and Scully were searching their hearts for the truths in life. Journeying to those dark places to bring forth light.

The movie had a lot of great shout outs to the fans ~ pencils stuck in the ceiling, sunflower seeds, Scully's cross necklace and many more. I loved the fact that Mulder and Scully didn't have everything figured out yet ~ we found them still struggling with the truths, but doing it together.
This quote from the movie is what it's all about ~

What an incredible truth that is ~ there will always be the darkness, but it's our mission to shine the light. I think that Mulder is drawn to the dark places, because in the inkiness of night his light shines brighter ~ it brings his life force to life! Another famous quote comes to mind when I think of lighting up the darkness ~

Galadriel: I give you the light of EƤrendil, our most beloved star. May it be a light for you in dark places, when all other lights go out.

On a lighter note, the Skin-Man cameo was awesome ~ if only the Lone Gunman could have made an appearance ~ maybe in the next one! So for now, I will patiently wait for the movie to come out on DVD so I can watch the movie again and again.


X-Files I want to Believe (2008 Film Score)

“Mommy, I think God might be coming for me!”

The other night my eldest daughter, Hannah, woke up and stumbled downstairs and sat down in the middle of the kitchen. She had been asleep for about an hour already ~ she was shaking and out of sorts. She complained of a sore throat and had a belly ache. I berated her with questions, trying to figure out what was wrong and what kind of medication would get her on her way back up to bed.

I dampened a washcloth, put it on her head and escorted her upstairs. I tried to tuck her into bed but she was so distraught ~ tossing and turning. Finally I managed to convince her to take some Tylenol. Hannah is a super healthy kid. She doesn't have many experiences with fevers and chills, so when she doesn't feel 100% she completely freaks out. She was delirious with fear as I was trying to explain to her that she probably picked up a virus and her body was killing it with the fever. I tried to quell her fears ~ told her to relax and go to sleep and then she would feel better when she woke up.

The things she said while her little mind was trying to grasp what was happening to her were cracking me up ~
“Mommy, I am not as brave as people think I am!”
“I just don’t know how much longer I can take this. I am just a CHILD, Mommy!”
“Mommy, I think God might be coming for me!”

The next morning, Hannah felt back to1 00% and we had a good laugh as I repeated to her what she had said the night before. I am so thankful that she hasn't learned how to be a good patient ~ to surrender to the pain. I was thinking back to the day after my spinal detethering ~ hooked up to a morphine pump ~ breathing through the incredible pain as I turned over in bed. Without a doubt the most painful experience in my lifetime, so far, but not one day did I shed a tear. I was focused, surrendering to the pain ~ letting it swallow me whole. Deep breath ~ hang in ~ persevere ~ get through it. I know that the sun always rises after a long, dark night of hopelessness. I have to believe it with every cell in my body ~ it's the only thing that keeps me alive. I pray that my children NEVER get comfortable with pain ~ ever.

Tuesday, August 12, 2008

Dark Stranger

Scullys
Theme - Mark Snow

Pain is Weakness Leaving Your Body - Nietzsche

PAIN has swallowed me like the whale that swallowed Jonah . This summer we have been pounded by low pressure fronts and pop up thunderstorms which add to the whole vertigo~pain in the neck/head factor. There have been no 'good days' for a while now. Thank goodness my surgery is on the horizon, although December feels so far away, I am hoping it will get here quickly. So if pain is weakness leaving the body then I should be feeling a whole lot stronger any time now, right?

There isn't a soul on the planet who isn't feeling some type of pain ~ emotional, physical or spiritual. We all deal with pain differently, but the question is, do we let it define us? For me, I still haven't figured out if learning, from a very young age, to grin and bear it was such a good thing. I think there has to be some kind of healthy balance of putting up with the pain and letting it consume you. For me, feeling pain reminds me that I am alive, my heart is still beating. This doesn't mean that I enjoy it, but a gentle reminder that I am human.

I watch X-Files reruns almost on a daily basis, shocker, I know! One episode from Season Four really stayed with me ~ I copied some quotes from the episode below:

Scully: In med school I learned that cancer arrives in the body unannounced. A dark stranger that takes up residence. Turning its new home against itself, this is the evil of cancer, that it starts as an invader but soon becomes one with the invaded, Forcing you to destroy it, but only at the risk of destroying yourself. It is sciences demon possession and my treatment sciences attempt at exorcism. Mulder I hope that in these terms you might know it and know me. And except this stranger so many recognise but so many cannot completely cast out and if the darkness should have swallowed me as you read this. You must never think there was the possibility of some secret intervention, something you might have done and though we have travelled far together this last distance must necessarily be travelled alone.


Scully: (Writing in her journal) I have not written to you in the past twenty four hours because the treatment has weakened my body. Mulder it’s difficult to explain to you the fear of facing an enemy which I can neither conquer nor escape.


In away, I identify with Scully's 'Dark Stranger'. Certainly an over zealous brain tail and cancer are not even in the same galaxy, but nevertheless, my brain tail is a part of me. In an attempt to make room for brain tail my body will feel great pain. With Chiari ~ there is no conquering or escape ~ not yet. I had a dream the other night that I shot a syringe of salt into my brain tail and just like that, it shriveled right up like a snail. Problem solved ~ I wish the cure for chiari were that simple.