Crossroads

Okay so I have been told in the past that I am not so good at getting information out on upcoming surgeries. That is how this blog "Tavelin' Thru" began. And I thought it would end after that first surgery(well sixth but whose counting).

So the surgery route doesn't seem to be ending soon.
I think with TCI I had some misconception that they would snip snip, fix Q.
And that's not how it works.
I know that isn't how it works.
But a girl can dream, right?!

Anyhow, I need the shunt again.
Yeah we all celbrated that I wouldn't need the shunt after my last surgery.
How exciting was that?!!!!
And for those who have been on this journey, there was good reason that we were all given that infomration.
We all needed that time of celebration.
It's been a long walk, and God knew there needed to be a break, a release, a time for joy. I don't notice a time for surgery....but nonetheless...

Eccl 3:1-8
There is a time for everything, and a season for every activity under heaven:
2 a time to be born and a time to die, a time to plant and a time to uproot, 3 a time to

kill and a time to heal, a time to tear down and a time to build, 4 a time to weep and a time

to laugh, a time to mourn and a time to dance, 5 a time to scatter stones and a time to

gather them, a time to embrace and a time to refrain, 6 a time to search and a time to give

up, a time to keep and a time to throw away, 7 a time to tear and a time to mend, a time to be

silent and a time to speak, 8 a time to love and a time to hate, a time for war and a time for

peace.NIV

A new season is blowing in, and it is time to switch gears.
The path has changed course, bringing me back to that dreaded shunt.

Don't worry. The Shepperd has not left his sheep behind. He knows my heart, and what I can handle, and when. And fortunately I don't travel alone!!!!

I am in a place where I am more easily accept this fate. I have had successful surgery with TCI, and trust that Dr. B isn't Dr. Spetzler. His first reaction to the recent test results was to make sure I knew that he remembered how much pain the shunt caused in the past. He didn't belittle me for having pain, or discount it. Instead, he is asking that another surgeon take a quick look in my belly as he is placing the shunt.....and hopefully they can find a spot to drain the spinal fluid that is less painful for me.

So here it is; the surgery date.
January 15th

A little close for comfort...but then again, let's get it done and over with.

I am ready to take the next step.
At least at this moment.
Pray the seconds, minutes, and days following, I will feel just as willing.

Peace,
Q

A New Season has Arrived

(ADD-ON at the end)
First of all, I am in Ariona until the 1st!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Had to get that out.

Ok, now that I have shared my excitement, it is time to share the rest of the story.
Not really, no story to tell. As you know, I have been wearing the space suit for a few weeks now. Not as often as I am supposed to, but I'm dragging in around with me, so that counts. Right?!
It is exhausting, so even though I know some of you gasped at the thought of not following doctors orders to the exact calculation.......I am trying.
I think it is too telling that there is something wrong.
Not just to others around me who notice......yeah oddly they do........but also to me.
I like to forget that I have surgeries waiting for me at the end of that flight back east.
Besides, I decided I am on vacation, so I left Chiari at home.

Wouldn't that be awesome?
If heaven has comment cards, I would suggest that we all get to take a week or so off each year from all our ailments and inflictions.
Ahhhh sweet relief that would be.
Where's you cast?
Oh I'm on vacation.
Aren't you going to dialisis?
Oh, no. I don't have to. I am on vacation.
Oh wow, your acne is gone........you must be on vacation.

Ofcourse I am not truly comparing Chiari to any of these things.......'specially acne.....but truly it is quite a blimish in what us Chiarians call life.
It is there. It can be noticable. And we look for that perfect ointment to make it disappear entirely......an ointment that doesn't exist.
(Note: not for acne either.......sorry)

Anyhow, I disgress.
I am here in the land I love, doing what I do best: write.
Edit actually.
I am on chapter three working on the hundredth or so edit of my book.
It really is coming to a close.

I thought I would never feel that this book would be complete, but as I flip through each page scowering the lines for areas of improvement, I am realizing my baby is done grown!
How exciting!
Once I am done, it will be time to update my query letters to find an agent.
Yes, an agent.
Q is right-brained.....she needs help when it comes to contracts and book deals.
And there are plenty of experienced people, who love to do that sort of stuff.

A new leaf is turning, and I see an outline of what lies ahead.
And guess what?
It's alright.
There is an even mixture of glass and marble, so it's all good.
God is good!
For today, I know that I can do this.

Merry Christmas my friends!
Q



ADD-ON: I just realized that I never told you all what was specifically going on.
The huge indent in the back of my head went the other way. Now I have a large pseudomenningocele (fancy way of saying pocket of spinal fluid somewhere it ain't supposed to be) bulging out the back of my head.
I spoke to my surgeon last week, and he says I have Increased CSF Pressure and frozen ventricles. What does this mean? Who knows....I'm not a brain surgeon. But I do know what he says it amounts to: I need the shunt again.
Keep me in your prayers. I didn't have a good experience with the shunt the first time.
This time I have a wonderful surgeon who cares that the other shunt caused me so much pain. He wants to do everything he can to make this a better experience.
Yes, I'm disaapointed.
But I'm also amazingly okay with it. I knew something was going on for over a month now....Now I just know what it is and what has to be done.
AND God gave me some time in Phoenix to refresh before facing the next bout.
This is merely a bump in the road (or in the back of my head; however you want to see it)
Pray for good results!
Q

His TIming not Mine

Okay, so first things first. I ended up in the ER the other night getting some tests and a CTscan. Which unfortunately led to some unpleasant news from the docs that something that we thought was history is very present and needs to be dealt with surgically.

My biggest freak out was in regards to how this was going to effect my plans to fly to Phoenix in the next few days.
Freak out is stating it mildly; I cried.
I couldn't understand why God chose this moment to reveal the issue at hand.
Why now Lord?

I wasn't as concerned about the prospect of having another surgery. I am already preparing for 2 more surgeries; what's one more?

However...

Couldn't it have waited 2 more weeks, after the New Year?

Even though the surgeon hadn't answered my email yet (I had emailed him the scans and results) I knew what he was going to say.
I have lived with Chiari long enough that I know what is going on most of the time.
Even at the ER, I told them what they would find on the CT scan....and they thought I was some Internet junkie self-diagnosing.
Nope. It's called Been There!
I was so relieved this evening to open my email and see that I could still fly.
It also talked about surgery.......but I knew that.

Still I couldn't understand why now. Even though I can fly, it is going to make me nervous. And now I go to see the place I love, gathering with my "sisters" with this new information to drag along with my carry-on luggage.

While Christmas shopping tonight, and trying to think of the perfect gift for those who touch my life so deeply, the answer came.
Why not now?
I wanted to find something that indicated to certain people in my life, my understanding that God had given them to me as touch-stones. Touchable, visible icons of His love for me.
Then it occurred to me that Phoenix is one of those touchstones.
A place I wanted to visit before having another surgery.
A place to draw courage, and strength for the next leg of the race.
Then I knew.
This was the perfect time to get those results.
Touching down in AZ, knowing what the near future holds......and drawing strength and courage from the milk and honey God has provided in the land I call home, no matter where I live.
Why not now?
His timing is perfect.

Valley of the Sun

I am going to AZ for Christmas!!!!
I am so excited. I miss it so much, and with the snow and ice here......I am so excited to go defrost a bit.
It has been a long year, and the peace of the valley is calling my name. I can't wait to spend time with friends I call family. I have missed them all so much more than words can express. But I also know we will be able to pick up just as if I never left, because our bonds are deeper than miles.
I also can't wait to sit on the plush grass next to the man-made lake, sipping on my favorite momNpop-shop coffee, while I work on putting the final touches to my novel.
Yes, I said final touches.
And this time I mean it!!!

It has taken me a long time to finish this baby because I haven't wanted to let it go. However, it is all grown up now and needs to leave the nest.

Any more coddling will only weaken it.

By the first part of 2008, I will be getting my first rejection letters from agents who read my query letters, and were disappointed that the book is not a romance novel, or mystery; and/or are hesitant to bring on a first time novelist.
Yes, rejection is part of the game, and I expect it.......actually I embrace it.
We can't please all of the people all of the time.
I only need one person to believe in it (outside of friends and family)
And it will fly. I know it will.
Post-Chiari writing has been a saving grace, sent from God to keep my mind sharp (no comments from the peanut gallery), and my spirit searching for more.
Anyhow, there I go into a side story once again.

The point is: I am going to AZ!!!!

Anyone else pumped about their plans for Christmas and The New Year?
And what about New Year resolutions?
Mine ofcourse is to get my book published.......and yours?

Men are from Mars; Q is from Jupiter

Halt! I come in peace!!!

So last week I brought a new trend to Fredneck.
It hasn't caught on yet, but just look at it;
how could it not?!!!

For me, I barely notice it.
Okay, that was an inside joke for others out there who have had to (or currently) wear this getup. It is anything but subtle!

It is quite an adjustment. Not just for my neck either.
Before I got the Apsen CTO Jacket; I was most afraid of how I would appear in the brace.
HA!
What a fool am I.

The truth is, it is so monstrous and ridiculously huge that not a single person would dare stare. And even when it catches someones attention (how could it not; it doesn't necessarily blend in), they see it from a distance, so by the time I can see their reaction the person would have had time to adjust the jaw drop.

Most people around me try to pretend it isn't there; which does bring humor to my day. It is the purple elephant in the middle of the room. Then there is my sister who doesn't have ID control. SO she calls it how she sees it.

She calls it weird. I call it my chasity belt. There is no better way to keep me single at this given time; then this jacket. I have done the research! So anyone out there having issues with relationships, this might be the answer you have been looking for.

What I didn't realize was what an adjustment it was going to be physically.
I tried to wear it all day the first day.
Not such a good idea.
I was so sore and exhausted once I took if off, I was afraid it was going to throw me into some kind of seizure.
So now I am taking it a few hours at a time, up to 6 hours.
I absolutely wear it in the car; but not so much in public places.......unless I disguise it with a scarf and large coat.

And believe me it isn't fooling anyone...
but for some reason if it is covered, I can pretend they can't see it.
It is like reverting to a 2 year old mentality when it is on; if I cover my eyes, you can't see me :)

As I said before; It is an adjustment.
And I am getting a little less fatigued by the thing. I am still though learning how to do things in it; like does anyone out there know how to use to phone; sit down; or eat in this thing?

It's so enormous; it is laughable.
There is no way to wear this thing, and not see the humor.
How ever, spiritually I am still open for God's answer to how this fits into his plan for me.
I know it does; I just don't have a clue how.

Some days you just wanna sit down with God at a table and have him draw the map out.
Anyhow, I just wanted to let you know if you do run into me someday in this thing;
It is just me.
And yes, you too may sport this new style.

But I will warn you that it is for the more conservative dressers; it only comes in slate gray.
Peace,
Q

That Sinkin Feeling

So apparently my head is not caving in.

According to Dr B, it is normal for my head to have an indent at this point of recovery from surgery.

Seriously, Sat morning, I thought my head was caving in. The huge crater in the back of my head, was even a concern to my PCP.......but Dr B says it is just because the swelling in starting to go down.

He reminded me it has only been 10 weeks since surgery.

I can't believe that.

10 weeks seems like months ago.

I really am doing well for 10 weeks out.

For those of you awaiting surgery... I am here to tell you it isn't a big deal.....

IF YOU GO TO A CHIARI EXPERT!!!!

I yell this because I have been down the other path and know how devastating it can be.

At this time after my first surgery, I still felt as miserable as the first day home.

It is nothing like that now.

I stand in awe at the guys at TCI.

Dr B and Da Boss are my new personal heroes.

On the ugly side of things, my Aspen CTO jacket was ordered this morning.

Not looking forward to having to wear it.

It looks uncomfortable, and dreadful. I am going to scare small children....that is if I ever leave the house.

And I don't think it is going to help my single status from changing any time soon ;)

......but on the other hand I can't wait.

I am hoping it will bring the relief that the traction brought.

I felt sharp, and so with it, I didn't even recognize me.

And perhaps it will relieve more symptoms, and keep my brain from further plummeting to my butt.

A girl can pray, can't she?

Which reminds me, I am going to send a name out to all you Christians, a new name hit my prayer board today, and I want to ask you all to lift her in prayer.

Her name is Dianne. God knows who she is, and what is going on......just hold her up in prayer please.

God is good. God is healing. And miracles so happen.

And miracles do happen.

Yes I meant to type it twice........

Peace,
Q

Acceptance

Ahhhhh, the sweet release of acceptance.

I finally accepted that the strand of hair left in the back would never reach the fullness, and length of the front.

For some reason I was thinking I was that doll that you could just slowly pull the hair, and it would magically grow or something.

Finally I went to my hairdresser, and let her cut my hair so it would match the back, and fill in the gap a little.

It's actually sorta cute.........but hard to get used to short hair again. Every time I pass a mirror, I do a double take, wondering who that bob cut is :)

No more hair issues.

Queli got her Acceptance Haircut.

Pride.........AGAIN

Hair again! I think I had a small abscess on the scar, so now my hair is up in a bun to keep it off the scar. There was a small bubble towards the top filled with clear liquid, so now I am a bit freaked out to let my hair rest on it, or have extensions in.
Ofcourse this means Zipperhead Galore!
Obviously I have some pride issues.
I feel like such a goober!!!
But I will live.

I was worried at first about the bubble, because I had a leak before (which resulted in a pocket of fluid developing right outside the dura)......so my overactive imagination wondered if I had sprung another leak, and this time the cerebral spinal fluid found a way out.
I'm not worried anymore, because after I drained the fluid and bandaged it for a few days, no more fluid developed.....so it was most likely a small irritated section.

I am going to my wonderful friend who does my hair on Thursday to look into haircuts for when I trust my hair to come out of a bun again. I am thinking this will be a good way to remind myself that this is temporary.

I do love that I am worried about my hair.
That is truly a luxury in the scope of things.
This time after my first surgery, I wasn't cognitive enough to be concerned about my appearance.
I was just happy when I was upright in a chair without getting sick.

Praise God! This is nothing. I am concerned about trivial stuff ;)

Pray for me to make peace with the Zipper!

Healing

I keep getting emails, asking how the healing is going, so I thought I should update you all.

This healing thing stinks.
Luckily I know how bad it could hurt and this isn't anything like my first surgery.

It is physically and emotionally draining. I mentally feel so rearing to go.......but my body says no...........not yet.
And so do people in my life. But I think that most people think this is much bigger than it is.
If only they knew how not a big deal brain surgery is... (shhh Chiarians, I won't tell em, if you don't)
I guess if they knew it wasn't such a big deal, everyone would have their brain in the shop for detailing, and upgrades... I
t would be impossible to get an appointment with the docs when you need actual repair jobs...like I did.
So I guess it is good that "they" think brain surgery is very serious.


Ok so I am in some pain, but in truth it isn't what you would expect. I have stopped taking all the pain meds including over-the-counter. The meds themselves cause more trouble than they are worth. The over-the-counter caused a bleeding ulcer, and the narcotics.........yuck! I won't even go into their side effects.

Since I am not taking any pain meds, I am aware of the struggle my body is going through to heal.

First of all, the brain itself does not hurt.

The journey the surgeons had to take to get there however........now that is another story.

The muscles in my neck are not happy at all that I had brain surgery!!!!

Every so often, a repairing nerve stabs me, to let me know of its struggle to regrow. It feels like an intense focal headache.......but only last seconds.

And my sleep is difficult, since I know I will wake with a neck that is sore and out for vengance.

ON top of that, I have to deal with bad Chiari days..........which I still get (without as many headaches, yea!!!)

Some days are worse than others, but for the most part, I am just feeling the growing pains as these muscles and nerves rebuild and strengthen.

I think I am fairly on-track recovery wise. I have an appointment in NY next month to make sure, but so far so good.

Letting the Zipper Accessorize

So I went with the boys Trick or Treating........well not so much, I only made it to the end of my street, and had to let them go on without me :P But I did get dressed up.

Getting a costume with no money and little time was actually easy......just drug out my old Pom-Pom outfit and shook the dust out of the poms. I look so young and innocent still in this outfit.

Although, I did find it much tighter than it was on the 16 year old who wore it before!

Sidenote: I know that those that know me with think it is funny I was a Pom Pom girl......perhaps this isn't the time to mention I was in a sorority in college! More on that another day.

The outfit was complete with pig tails and an axe.

Of course, I just had surgery six weeks ago, so an axe in the back of my head was a little more wieght than my neck could support......so perhaps that has something to do with why I got tired so quickly.

But the real fun part of the night was that I ended up dressing up that one part I have been trying to find ways to hide.

Gotta find ways to might light of the Zipper! And here was a way to let it emphasize my cheap costume.

I hope you all had a wonderful Halloween. I know I did.

Place in this World

Guess what is right around the corner?
Nov. 2nd.
My birthday.

So every year around this time, I do what most people do on New Years Eve.....I evaluate the past year. I look at where I am, and where I have been, and of course where I want to be.

Chiari has changed a lot regarding where I want to be.
I used to have glorious laid out plans of who I was to be: Therapist, Wife, Mother...

Today, I am none of those. However, it is not because it wasn't part of the plan.....it just wasn't part of His plan.
I laugh when I look back on my life to the times I thought I had everything all figured out. Even seasons that I thought were well planned, had no room to continue when life's AFGOs trickled through.
It makes me think of my first year back in college after Remuda. I thought I had it all so figured out.....and I was flying high.
I had a job working with children. I was working towards the end of my degree, and I was going to Amsterdam in the Spring. Life felt so slow that I wanted to race ahead to all those plans I made.
One moment put the brakes on the turtle I thought couldn't move slower. It was a phone call from a friend back in Marlyand letting me know there had been an accident and I needed to come home.
For those that know me, you know what that was all about... but that isn't what is important in this story. What is important is that in the blink of an eye, the train went off track.
I never made it to Amsterdam and I didn't get back to school until the following year...and even when I did, I came back with experiences that changed my focus on what I wanted.

And I was okay to return to slow btw :) Even planning for the storms don't prepare us for that call at 2am, that we didn't even dream of preparing for. We spend so much time planning who we want to be, and we forget that those AFGOs are down the next path....yeah the same one our plans are on... and they lead to forks that aren't on the map.

Anyhow, I have finally given up the desire to plan out my life. Sure there are things I want to do, and places I want to see, and experiences I want to have.

But those things are not necessary.
Chiari has taught me that life is what happens when you are busy making plans. So personally I have made the decision to see my eyes, ears, and spirit open to where God leads me.
So, for the birthday review time summary thus far: I might never get married (sorry mom), or have kids, or be a successful therapist. And that's alright.

Even though I am not where I planned to be at 34, I am exactly where I am supposed to be at this given time.

For all of the Chiarians out there:

I changed the song on this blog for the month to Invitation Fountain...

"All who are weak, all who are weary. Come to the Rock. Come to the founatin..."To remind us that even though we didn't plan on this condition, it doesn't mean that God's plans don't include using it to strengthen, prepare, and equip us for what he has laid out for us while we are here on earth.

Peace, and next time, I promise to update you on all things Chiari :)

Grant me the Serenity to accept the things I can not change...

So I hear it has been a while since I piped in....so here I am.
Things are going well. I am feeling more and more alive everyday. I am also starting to get back to a semi-normal routine.....and drum roll please...
I am writing again :)

There are still obstacles I face each day with very little patience for this healing vessel.
The hard part is dealing with limitations, accepting them, and moving on. I have always prided myself in finding a way to get things done.......and these days things are not getting done.
For instance I needed help lifting the hutch to my kitchen cabinet......and I spent several days trying to lift it myself, or figure out a way to make it easier for me to lift.
It took a while to just accept that lifting the darn thing would end up hurting me more physically than it would hurt my pride to ask for a little help.
Not just pride for the lifting....but for the mess someone would have to walk through to help out.

The place is horrible. I don't have the energy to clean, but I want to lift my own hutch. In my mind it all made sense.
What I do find interesting is that I seem to have enough energy to make a mess...

So this week I am trying to clean. Taking a little at a time, and focusing on what I can do.
Just because I can't climb up to dust the mantle, really should not mean that I let the rest of the room fall to pieces......or at least so "they" say...

This will be a feat since I like to clean from top to bottom in one large swoop. But here is a lesson on patience for me to study thoroughly.

Isn't is great that my AFGOs are so small in comparison to the last several weeks?
Yet, God is continuing to supply me with AFGOs which means I'm not done yet.

Smothered in Grace

I have been saturated in God's grace for the last three weeks. Instead of noticing aches and pains from recovery, I have just been blown away in the reality that this recovery is sooo much easier than the first.........and the surgery was greater.........I mean they took part of my brain......not a big part......not that I use it much.......but they took it.......so shouldn't I be having a harder time?

Ok, so for those that have read A Day Without Chiari, you know how a brief lived miracle floored me. Now imagine how I am handling this. I will just say, very emotionally. For those who know me personally, this may be hard to believe, but tears come often. I have been a Christian for my entire life, and still His glory floors me all the time.

All this to say........this last week has been hard. lol

I have settled into the grace long enough to get comfortable I guess.......comfortable enough to notice that I am in some pain!
I think I am overdoing it without realizing.
I am just so exciting that I am not throwing up, that I can walk, and see, and read......... that perhaps I am trying to hard to race to the next phase.

So tomorrow I am going to rest, and try something I haven't done in a while: sit silently and listen.
I used to try this often.....it is something I read by a Willowcreek Pastor who said that we need to sit in silence and listen to God. She said silence meant not to be praying or thinking about anything........just starting by praying "Speak Lord, for your servant is listening" then sitting patiently to hear the voice of God.

I am not that patient. She suggested a half hour. I had to set my alarm clock for five minutes, so I would stop looking at the clock. I eventually got to the half hour.....but it took a long time.....and a lot of God's patience as I would often replace silence in the beginning with grocery lists, or other random thoughts.
Silence is a tricky place in today's world. We have so many ways to ignore it, that we are no longer comfortable in it. I am here to tell ya though that, once I got there, just a few minutes in silence at a time, I found such peace in the silence I wouldn't dare to try to put into words.

Chiari has stolen a lot of peace over the years...........and it is time that I regain a sliver of that.

So starting tomorrow, I am spending five minutes in silence. Wish we well!

Ooops I did it again

I start this with an admission and plea to God.
Lord forgive me, I lost my way once again.
I have been praising God in the results of this surgery, but somehow forgot my promise to Him somewhere along the way.
A few months ago, when this journey first began its new direction, I knew the great possibility this would happen. I even met with my pastor ans prayed that I would not forget my promise. But yesterday, the creator gently nudged me, and reminded me. Sometimes we get pushes, and I thank God that it was a soft guiding nudge.
See I went on my first social outing since surgery yesterday. I had a lot of praises to share about my experience. But when asked where I was headed from here, I had no answer. In my head I thought of going back to therapy and working with addictions, or committing myself solely to those unfinished novels I have spinning around in my head.
Not a single thought went to continuing on this ministry path God has lead me on.
It was only months ago that I admitted to my pastor that this could happen.
If God healed me, or at least restored me to the point where I would have choices, would I choose to serve Him? I came into servanthood naked; stripped of my career, health, and everything I used to hold dear. It was one of the few things I could do.
What I found was more than I could hope for. The only words I can seem to find to describe it is grace.
When I started volunteering my time to serve Christ by serving others, I had no clue I would get anything out of it. Selfishly I did.
I found that the road had not hit a dead end, but a continuance down a path I didn't know existed. All of a sudden it made since why I had gone to school, and how God could use it, not only despite my limitations.......but because of them. I found a place where, cheesy but true, I was comfortable in my own skin. A place where I didn't feel the need to control, but to just be present and ready.
And now I was just about to give all of that up.
And for what?
To reach for that dream society expects all of us to reach for....of money, and success.
When the lesson has already been taught that these things are not what brings what I need. These things no longer define me, because what Chiari did teach me is that at the end of the day, the only thing I am that is worthwhile is Christ's child.
I hope this isn't babble to those who come across it. I am just processing.
Today, Interestingly enough, the message was about servanthood.
and to draw the point in, the final song at the end of service was one of my favorites.... one of the reoccurring lines being Come heal me Jesus, I will follow.
And I was following much better before his healing.
lol.
I sure am a spoiled child, aren't I.
Ok, so here it goes, before God and the World Wide Web, I recommit.
I share this with all of you for accountability.
I let go of these reigns I seem to think I have, and hand them over to the one who made these eyes.
Letting go means being still and letting the Lord lead this journey. And for those of you who know what a control freak I am, this isn't going to be easy.
But I am comforted in the fact that I know the trip is going to be amazing. Look where it has come so far.

Limbo

Week 3
Ok, so I will start off reporting that I am doing well. Today was a good day as far as pain goes. Overall I feel that this surgery has had amazing results. Thank the Lord for blessings I couldn't have even imagined.
My one concern is the continuing fatigue. I guess for some reason, I felt that this would help lift some of the ongoing fatigue I have.
Perhaps it is still too early to tell though.
I have no clue.
Since things have gone so well this time, I really have nothing to compare it to.
Anyhow, I am bored.
I would do more, but I am exhausted.
lol
I hope all are well out there.
Feel free to let me know what is going on with you all.
Q

Did someone say I had brain surgery?

Cuz it doesn't feel like it. I feel great....cept those stiches in the back of my head. I feel a bit off balance, some nausea, and occasional pain. But in light of the surgery I had 2 weeks ago yesterday, I am doing great.
Actually better than great. How I feel now wasn't even on my craziest dreams list of after sugery outcome.
I ezpected pretty much the same as last time I had this surgery.
Unable to read.
Unable to stand.
Unable to walk.
In incredible pain.
Throwing up constantly.

But it is nothing like that.

My biggest complaint is boredom.

Recovering from brain surgery is boring.

Those that know me, know that the discharge instructions are completely unreasonable.

No working for 2-3 months....then part time work. Ok, that's fine. I haven't worked in several years anyhow......so that is no biggie. (but I am hoping that with this surgery, and the possible 2nd one I might need, this will change)

But saying I need to coll it on housework.

Kill me now, or give me a vaccuum.

Seriously, my body is tired, but my mind is racing with ideas.

Life seems to have more possibilites now. And I didn't expect that.

I secretly hoped that......but dismissed the thought, not wanting to be crushed with disappointment. And even worried about some of the hopes you all have expressed, not wanting you to set yourselves up for disappointment.

I knew there was a good chance that nothing would change.

But things have changed.

I don't know how much, or in what way.......because I am still dealing with recovery......... but believe me when I say with no proof, or example..........I know that the surgery was a success.

I can feel it.

So keep praying. But this time let your optimism talk freely in those prayers. Pray for the moon..........cuz this child of God apparently is being blessed yet again.

I'm so spoiled but at least I know it.

Take care of you,
Q

What a ride so far, huh? Goodness.
Ironically, today has been the only day it really hit me that I had brain surgery. First of all, I was completely out of it until I got out of ICU, which was around Thursday. And by then the docs were done talking about all that went down in surgery......so I am still putting the pieces together. God blessed me with a wonderful friend in Jen, who has patiently explained and reexplained to me what went on.
So here's what I understand. The docs found chemicals or something like that, left over from menningitus from the first surgery, so they cleaned that out. They burned off a part of my brain I apparently do not need (apparently these docs know me better than I thought they did), they took out everything the old surgeon put in, and got rid of the leak......then used some of my own scalp tissue to create a dura patch.........and finally something I am very excited about.......
They gave me a trap door scull. lol
Jen referred to it as a trap door, stating it will make it easier to get in next time, while providing structural support.
I don't get all that......what I do get is that finally, five years after my first surgery, I have a scull in the back of my head instead of a soft spot. And so touching the back of my head isn't painful.
This place was so awesome, I really want to take another time to tell you about it. But I will say, that I feel better one week after this surgery, than I did six months after my first surgery. God has defiantely been at work here, and I want to thank all of you who took part in praying for that.

Well I was officially discharged from the hospital this afternoon. We have to stay in NY for a few more days. My doctor thinks I will be okay to travel by Wed.

I am exhausted and need to get to bed. The ride to the hotel really wore me out. I feel so old. But am looking forward to spending the first night out of the hospital.

Update #2

Hi all!
Queli has asked me to post the hospital address & room number:
North Shore University Hospital
300 Community Dr.
Manhasset, NY 11030
(516) 562-0100

Room # 466

She is supposed to be in the hospital through the weekend.

Also...SHE DOES NOT NEED A SHUNT!!!!

They removed the fluid & "fixed the leak" (that's in my words.... not the surgeon's!)

-jen (for Queli)

Surgery Update

Hi all!
Queli came through the surgery just fine! It ended up lasting over 9 hours. We did not get to talk to the surgeon for details, but we did get to see her a few times. VERY groggy & just being Queli...apologizing for not being able to stay awake to entertain us & asking us how WE were!!! Even a nice dose of heavy drugs can't stop her from being concerned about other people! They kept her in "recovery" overnight & she will be moved to ICU today...probably for a few days. I'm guessing I will be posting another update soon(If Queli would like me to).

-Queli's friend Jen

Zipperhead Eve (again)

Today was awesome. I spent the day with Jen, in NYC just hanging out. We did do a tour at a museum called Ground Zero Museum Workshop. It was amazing. So amazing in fact, that I am updating my recommendation list, and making visiting this museum number one for visitors to NYC.

The museum features photographs and artifacts from the recovery efforts at Ground Zero following the events of September 11th. Gary Marlon Suson's artistic eye, catches the emotions, hopes, trials, and mood in every piece laid out in that small studio. Each comes with a full audio description of what was going on during each shot. We were lucky to have Gary as our tour guide, and were able to ask him questions during the tour. He impressed me, even more than his work. Point being: the details that have been put in this place, make this hour and a half event, well worth every penny you pay.

I do want to tell you about this one picture in particular. It struck me deeply with all that lays before me in the next coming weeks. The piece is called Ground Zero Bible Page. Right when Gary felt he couldn't take anymore at Ground Zero, he stumbled across a page from the Bible amidst the rubble. Which page, you ask? Good question. It was Gen. 11, entitled Towers of Babylon. Anyhow, how do I relate? mmmmm. Back to Velveteen Rabbit.
The picture encompasses both dark and light; destruction and resilience; the beginning in an end...

If you have read all of my posts, you have no doubt, a strong understanding why these contrasts would identify with my own struggles these last few months. If you haven't read my blog....then do it. lol.......ok, wrapping it up.......It reminds me of Gods hand on us even in our darkest moments... how he has used every aspect of this Chiari thing to teach me, and cause growth that couldn't have come any other way.

The light in what I thought was the end......Christ has let me be aware of his presence throughout this all.
And today was a good day to remember this.

(IF YOU WANT TO SEE OR PURCHASE A POSTER OF THEGROUND ZERO BIBLE PAGE WHILE SUPPORTING THE MUSEUM AT THE SAME TIME,YOU CAN DO SO BY VIEWING THIS PAGE: http://www.groundzeromuseumworkshop.com/op.htm. )

Tomorrow morning at 5:30 am, I am reporting to the hospital for the test, and then surgery. I just finished my DDP (diet doctor pepper) Marathon that lasted up to the very minute I had to stop drinking prior to surgery.

How come you get so thirsty once someone says you can't have anything to drink?
Am I the only one who has to eat/drink up to the last second, as if all food and water ceases to exist after midnight?

Here the rule is 11pm. Uhhhggg! And if you know me, I follow the rules whenever possible. So I stopped at 10:55, just in case that extra 5 minutes could help in any way.
Anyhow, tonight (and for the last few days) I don't feel nervous.

Weird huh? Not if you know my Lord. There is no reason for me to go into this afraid. To live is to die, to die is Christ........right!! I am happy with my life, and don't feel I have to cling to it. Although, I know that all will go without a hitch.....I also know that God gives me strength through trials as well.

There is no doubt in my mind that whatever happens tomorrow is in God's hands.
I will talk to you all again when I can type again. Until then, Jen will be posting, and will also retrieve email from my normal email account.
Take care of you and "see" you soon,
Q

TEST POSTPONED

The ICT was postponed until Monday, due to an emergancy surgery the surgeon had to attend to. So now, I will have the Frankinstein right before the Zipper on Monday... which I liked much better than the option to have the surgeons start on me later this evening, on a Friday night, after after a long day....just wanting to go home like the rest of us.
So keep posted, and have a great weekend.
I plan to try to see the beach, and Central Park now that I don't have any extra pain associated to the ICT.
Take care of you,
Q

Pray

I am heading to NY.
The letter isn't here yet.
I am going on faith.
Pray answers come soon.

FREAKIN AFGOs

Lol........You must read my Velveteen Rabbit post first if you haven't.
Life is crazy, it really is.
Just when I thought I was totally cool with everything, I realized life was just as unpredictable as it was yesterday.

So in the last weekend here is the cliff notes:
first of all it must be stated that pms does not make any of this easier....
*one of the closest and longest friendships in my life ended in a four sentence dear john letter
*surgery dates were messed up by the hospital (it was just a mix up in comunication--wheew!)
*pipe busted, soaking the apartment......again!!! (and on Friday which meant it couldn't be repaired until today....my poor carpet)
and for the latest one, may I get a drum roll please...............
*the surgery I am leaving for in the morning, may be cancelled due to politics between the old and the new surgeons.

Geez it is ONLY brain surgery people!!! (sorry I like that joke)


Three letters keeping me from the surgery that might make a huge difference in my life:
PRN

Instead of saying I was discharged, the old surgical group added that they would see me as needed.

Uuuhhgggg!

Is this for real?

I am perplexed?

Am I on Candid Camera or something?

Please tell me my health and wellbeing isn't being held on 3 letters. Please dear Lord, let me just be released from this life contract I must have signed with this surgeon that appears to make me his property for life. Breaking free from AOL is easier than this.......and that ain't easy.




Of all of these things going on at once, the friendship and the politics are the ones that come with daggers.....

Ahhhh......they must be the AFGOs.

Freakin AFGOs!!!

Anyhow, to end this saga... now I am waiting to see if the fax gets from Phoenix to New York before I am supposed to leave in the morning.

I am so grateful that I have strong roots in Christ. He is the only reason you will not hear about me on the news tonight about shots ringing from some bell tower somewhere.
I have inner knowledge that all things work for good, to those who serve him. Just hate the fact that I don't get a road map to see what lies ahead.

I know this is some kind of AFGO, but wow. I have no clue what that lesson is, except to expect the unexpected.

Hopefully my next update will be from NY.

Take care of you,
Q

Prep time

Today I have been cleaning and organizing, trying to get ready to leave for New York on Wed.
Here is the schedule of events:

wed; arrive in NY
thurs: pre-surgery testing
fri: Invasive Cervical Tractions (3pm)
mon: surgery (7:30am)

I will keep you updated until surgery. After that, Jen will contact those who wish to keep informed by phone or email.
I will most likely be in the hospital around 5 days from what I understand. Then I stick around NY to see the docs before I leave.

Right now I am trying to get my apartment into post-surgical shape. I am trying to arrange things so it will make my life easier during recovery. Like moving the tv so I won't have to turn my head to watch, and junk like that. Luckily I have had this surgery before, so I know some limitations I might have post-op.

Otherwise, I am feeling comfortable with surgery approaching. Isn't that strange? I keep waiting to completely flip out, but as for now God has calmed my nerves.
I really trust this doctor and the TCI team. Keep them in your prayers over the next week. They deserve any blessings God sends their way for offering hope to what seemed a hopeless situation.

Anyone who has had surgery recently that has any tips, feel free to give them. Also, note that I finally got a homepage. You can find a link to it on my profile page. There is a Chiari forum, and chat. Feel free to post there, and add topics as you so desire. Ofcourse stay appropriate, cuz I know how to delete :)

Take care of you,
Q

Velveteen Rabbit

Ruffled, worn, and falling apart, the velveteen rabbit rest speechless on the floor.

The trip has been exhausting, and the journey long.

Each gentle guiding stroke, is now obvious from the prevalent bare areas where fur once lay, soft and clean.

The fur that remains is now dull and blemished.

The process of becoming real is not so pretty :(

I can't help but look towards surgery, and be reminded of the velveteen rabbit.

My body is worn, ruffled, and falling apart. And it will only feel and look worse in the weeks to come.

What will come from it though is one more step towards what God planned for me to be.

A lot of people think Chiari falls outside of the grace of God; outside of His original plan for me; not what He wanted for his child.

I don't agree.

Although the journey has been long, and its trials evident in my worn fur.........it has all been a series of AFGOs leading me to the raw realness of who I am to become.

AFGOs for those who don't know me, stand for Another Freakin Growth Opportunity. Ofcourse the original version of that I was given has been cleaned for all eyes and ears to take, but either works.

Life is full of AFGOs.

Ugly, painful, wonderful, AFGOs which both make and break us.

Yes make AND break.

Not either or.

Refinement burns out the ugly dark pieces. It isn't a gentle process that you come out of unscathed.

The breaks and tears are important; they are Gods wind for us, making our root in Him stronger.

Never feel sorry for me for having this condition. It isn't as debilitating as it is abilitating.

It has taught me far more than words or teachings ever could.

It has planted me stronger in my faith, and brought me closer to God.

But don't expect me to face each new AFGO with a grin on my face.

I don't like 'em.

There, I said it.

AFGOs suck!

They are uncomfortable, usually painful, and during undesirable times.

They are meant to shed off that next layer to get to the core. And like an onion, as the layers are removed, tears may result.

And this week(or next, I am sure) "How are you?" isn't the best way to greet me if tears make you uncomfortable.

I am emotional, almost bipolar, in fact, in my degrees of emotion.

I'm am smack dab in the middle of an AFGO, and let's be real; I ain't happy about it.

But I do still have joy. Joy in the knowledge that I am held to a greater purpose than this body can possibly restrict me from.

I know that there is good on the otherside of this mountain.

So a better way to greet me perhaps it to just say "keep climbing".

I am almost at the peak, where I will be able to see the road for miles ahead.

Until ofcourse, I hit the next mountain. Unfortunately our lives are not made of one big test, but a series of 'em....... us humans aren't necessarily the quick learns as we think we are.

So feel free to join me on this journey ahead............just know you might see tears along the way........and that's okay.

I gotta mountain to climb.

Ofcourse, if someone has a drill to go right through it, I will take that too.........

But for now, I'll keep climbing, loosing some fur along the way (Huge hunk from the back of my head to be exact) Each step to becoming more authentic in my walk.

Sorry this blog is so full of metaphors...........just thought you all could relate more than you could to brain surgery. We haven't all had someone drill into our sculls, but we have all been on this journey.

Take care of you,

Q

Surgery On

Okay.......don't ask how it got back on track......but it is.

2nd Opinion

Well I had my consult at Hopkins today.........

I'll just say, TCI makes all others pale in comparison no matter what.

However, the experience was interesting. The guy was double booked every 15 minutes.

So I waited for 2 hours for my, what turned out to be, 5 minute consult.

Unimpressed.

How could I be thought after TCI took such care in making sure they had all the testing done just right, and had an entire Chiari crew.

All in all, I am glad I went today.

It just made me glad I found TCI.

Yeah, the situation about surgery is irking me to no end...... but as far as Chiari, these guys know their stuff.

And something I found out is important when you are having major surgery.........they are human, and treat their patients human also.

Surgery: 2 B or Not 2 B

So I got this letter from my surgeon saying that TCI has decided that before treating me surgically, they have to send Spetzler a letter describing what their impression and findings are.
Then, if HE decides to resign from the case....THEN they will treat me.
It doesn't say they are even asking him to resign.
It sounds more like they are treating it like they are consulting with him.
The same guy who screwed up in the first place.

The message I didn't send let's you understand a little of why I can't stop crying.

First of all, this is what I want you and your partner to understand. Dr Spetzler is highly regarded in the field of neurosurgery. I don’t want to be disrespectful, because the guy does save lives, but that was not my experience. My experience was quite opposite.

I used to cry before having to go see Spetzler. I moved across the US to be able to have the freedom to see another surgeon, because once I stepped into Spetzlers door, no one would even offer second opinions beyond “Well if Spetzler says you need surgery, he would know”
And as naive as I was at that time, I felt safe that everyone trusted him so much.

I am so trusting anymore. Even though I felt very positive about TCI, I am still going to Hopkins to see what they have to say.
And because of that he is.no longer my surgeon.
And whether he has signed off on that or not, it isn’t his decision to make.

What I did end up sending is this:

I don’t understand what the reasoning would be behind contacting the surgeon that screwed up to get his “go-ahead”. I realize there must be more to this that I don’t know about, but I am baffled.
Please explain, or feel free to forward this message to someone who can.

I am such a wimp.

Anyways, anyone ever heard of surgeons contacting the guy who screwed up for permission to take over.
This sounds like the same political junk, that made me need to relocate across country just to get someone else to see me. The only second opinion I have gotten since the day I stepped through Spetzlers door is, "Well if Spetzler say so"

I am devastated.
This guys ego is larger than I have ever seen, and I doubt he would just resign. He would never believe someone else could do anything better than he, The Great Spetzler.

God does all thing for good, for those that love him.

I know this.

But right now, I don't understand

Fundraising

Hi all,

I am planning on having a fundraiser at the end of the month to raise money for the next part of this journey: surgery.

The exact details will be posted soon. I am still looking for a place to have it.

If you have any ideas, feel free to comment or email me.

I am looking for something in Frederick, MD. (I unfortunately live on the outskirts, which is not a good place to have a fundraiser)

Anyhow, there are also links on this page (on the right hand side) to other fundraising efforts: including making a donation (yeah, I said I didn't want to do it that way...but everyone keeps insisting that I should offer it)
or buying Chiari items (t-shirts, mugs, mouse pads, and the such)

Any other ideas are welcome :)

Thanks guys.

Take care and God bless!

Zipperheads

Check out my new blog at http://imzipped.blogspot.com/

Feel free to send me your email address to my junk email account: queli.is@gmail.com
to become a post-er on this site. Please put Unzipped in the subject line.

Take care of you,
Q

Do the Jitterbug

Did that song have anything to do with the butterflies in my stomach?


So the peace collapsed some tonight. It was weird because the crash caught me off guard. I was fine, and then in tears.

I'm like manic-depressive the days prior to any surgery. Happy and excited at the prospect of hope one minute, and then sobbing the next when I least expect it.

Honestly, I have been shocked by the peace I have had.

I cried at church this week.......because they just happen to have to have an entire series on The Roadmap to Peace, just a month from surgery..........and I was so awed about how I was able to have peace despite the circumstances. Really it is amazing to know that the road ahead contains some serious pain...........but be ok anyhow!

The peace is awesome!!!!

So tears ofcourse floored me.

I was irritated about being in pain.....and then for some reason let the thought of how much pain surgery is (you gotta remember, I had this surgery before, so I unfortunately know this).......and I got scared again.......and that fear came out in streams for a little while.

But they are gone now. So don't worry needing to cheer me up.

As I have said before, I am spoiled, and God doesn't let it touch me for long.

I am just practicing sharing my feelings, like I have been known to tell others to do :)

Anyhow, I have been scoping out the Internet for deals on hotels in the Long Island area, and still have found nothing worth mentioning. I am not thinking that the place I was hoping to stay will work, and I really want someone with me. Why is NYC so expensive?!!!!! Why couldn't The Chiari Institute be in some small town in NC where hotels and food are cheap? At least then, all I would be worried about is what ever the insurance won't pay.

My mother will most likely be traveling between NY and MD most of the time. It is really too long to leave Robin with my grandmother. For those that don't know, that is my sister that had a brain injury a while back due to an aneurysm------and no, I have already checked with my parents; they did not do drugs, nor are they siblings. At least, so they say.......

I am trying to fly my friend Jen out so she can stay with me especially during the time after I get out of the hospital, but need to stay in NY. My mother has to be back in MD the following weekend, and who knows I might be out of the hospital by then and in some hotel waiting to be oked to go back to Maryland.

Anyhow, fundraising ideas.........please start coming. I doubt that many people are going to buy Chiari t-shirts, clock, and mugs.

Luckily, it's a rare condition, so there just isn't the audience for the product. Those reading with Chiari......see the link to the right :)

I have come up with a really awesome idea for the future.....you know after I sell my book, and have the money........I would love to find a house in Long Island and turn it into a place for people to stay while being treated at The Chiari Institute. Not only would it be a place to stay, but also a place to meet others who live with the same condition.

Anyhow, I digress which is most likely why I haven't come up with any new fundraising ideas as of yet. But I will put my mind to it, and get back to you.

In the meantime, if you have any ideas, set them free in a comment or an email. I would love to hear them.

Pray concerns: Keeping the peace in that huge brain of mine that won't stay in place.

Take care of you!

Ok, for real now....

Surgery: Sept. 10th

Pre-surgery torture: Sept. 7th

Pre-op testing (normal stuff): Sept. 6th.

Where?: NY, baby!!!! Northshore hospital in Long Island.

Who: volunteers to step in have this surgery, are welcome. Previous surgery is not a must. Just should have more guts than me/ or have little touch with reality/ or enjoy pain.

How?: Don't know yet. God will provide. Not asking for donations this time......not because I didn't appreciate them last time.........but giving out money has to get old.

I do have some possible offers for a place to stay in NY (we will be there 2 weeks or so) And I called and asked about their facility called something like Variety House......lol.....that is most likely not the name, but it is escaping me right now.

Anyhow, you may still buy shirts at http://www.printfection.com/acm
Which by the way, just had a new section added with religious/ inspirational designs on the back, and the Find a Cure design on the front pocket area.
Only one in that section so far, but there will be more to come.


Well I guess that is it for now.
Thanks for being so supportive everyone. I am so blessed, and I know it too. As many of you have heard me say it before, we may all be children of God, but I am the spoiled one.

Sale on Chiari Stuff

There is a sale going on at my t-shirt site starting on the 21st.

There is a link to my website on the top right side of this page.

Please feel free to send me design ideas.......this is still new to me.........but fun.

Take care of you,
Q

Update on Surgery

The surgery has been rescheduled for sometime in September. (more info available when I hear back from TCI)

There is a test which requires knocking me out for a few minutes, then running some tests.

I looked for a website to direct you to that explains the test....

But the ones I found are from patients, and quite graphic. Baiscally, without the gross details....a traction will be attached to my scull which will basically turn my into a giraff momentarily while they test to see if this corrects some issues.

In easiest terms this will mean I need to come to NY two days prior to surgery.

So for now, I am just getting things together for the fall, and going on with life as usual.

In God's Time

Ok, so this afternoon I decided to update ya''ll (my North Carolina education coming through).

I had just prayed before that, and had decided not to dwell on the fact that I hadn't heard anything from TCI yet.

I was worried that the longer it took, the longer until I have surgery

......which meant more time to get my panties in a knot.

Finally I put my hands in the air, and surrendered the fact that it was to be in God's time, not Queli's.

This verbal admission occured outloud outside on the patio.

Luckily, the dogs already know I am a couple cards short of a deck, so they didn't mind.

All this to say.......so then TCI called.

And God does tell us things so directly sometimes, that we do not understand.

TCI said they would like to see me in a week instead of a month.

The surgery is set at this point on July 23rd. Which means I need to be in NY by the 20th for presurgery junk.

Which means I have no time to plan like I love to plan. And means I don't even have time to worry about the money or how bad it will hurt, or if my living room is adjusted to be most comfortable during post-op.

It is all in God's hands.

From the 19th on, I will most likely finish out July in NY.

So keep these dates in your thoughts and prayers.

Take care of you!

No Date Yet

I have left a couple of messages with TCI's surgery scheduler in the last week, and have not heard back yet.

I am guessing that might have to do with the fact that the place is booming with people from all over the world, looking for someone who truly gets this thing.

Anyhow, so that means I have no clue when my surgery is going to be at this point.

I have not blogged since I have been back, because I struggled with whether I should share my process with you all. I usually figure it all out, then share as needed. However, I did bring you all along for the journey thus far, so is it fair to just leave you hanging?

Perhaps.
Perhaps, you would understand.
Perhaps you could care less.
Perhaps we come from a society that just wants the facts anyhow.

But in the last few days I decided I would at least answer the questions to all that I have received since I got back.

How am I feeling?

Interestingly, the vision of a person whose house has just been shredded by a tornado comes to mind.

Reporter: You have lost everything you own. How do you feel?

So I have an active imagination. Like that is news.

I'm alright. I feel excited, nervous, terrified, and relieved.

My thoughts regarding surgery

The benefits outweigh the risk, as far as I am concerned.

And I know it will be painful, but all great growth moments are, aren't they?

Mother Teresa is quoted saying:

I know God will not give me anything I can't handle. I just wish that He didn't trust me so much.

I couldn't think of anything beyond the surgery when I first came home.

And I was freaking out inside.

However, after spending some time in prayer, I really feel at peace with it all. I am awed by the sense of tranquility I do have right now.

Now this might be temporary....but I am getting things done, and thinking about other things for now, so I am happy.

What will the surgery do for me physically?

Hopefully it will relieve pain and fatigue at some level.

It could make life so much easier.

Sigh.

Anyhow, I will put up more pictures from NY when I get them, and post the surgery date when I know it.

Following the next path

Well here I am.

Back in MD.

Glad I brought my mother to NY, because everyone seems to already know everything, so I don't have to explain. lol.

There was a lot to ingest from my trip to NY.

Here is where I am at, at this point. Be sure to read RESULTS blog for more info on surgeries.

I am taking every suggestion TCI gave. I am surrendering to their knowledge and understanding of this illness........and letting they lead.

Doesn't sound like me, does it?

Truth is that I have lived knowing I have this condition for what, 5 years.......and have gotten very little reassurance from any of my doctors or surgeons that any had a strong understanding of Chiari.

It's not so common.

But these guys see it all the time.

I actually met someone in my hotel who had the decompression in March, and was there for Tethered Cord surgery.

She was walking, and seemed to be doing well.

Three months after my decompression, I think I was barely out of the wheelchair. Still using a walker, and still barely able to move without throwing up.

Anyhow, it looks like I will be on the east coast for a while.

Even if I did these surgeries every other month starting in August, it would be March or April before all were done.

Right now, I am just focusing on the Posterior Fossa Decompression and the possible shunt that may come from it.

Please pray about this surgery, and the costs. I am going to have to come up with some new fundraising ideas. Any suggestions are welcome.

About TCI: I loved them. My nurse kept saying, "We understand here, you don't have to explain".

And my surgeon said outright that he is not afraid of my last neurosurgeon. Which was so good to hear. No one in Arizona would take me once they found out who my last surgeon was...and at TCI they could care less who he is.

That was so reassuring.

He is so everything the previous jerk was not. He even has a sense of humor, and a personality. (And people think you have to have your personality removed to be a neurosureon!)

Hell, he even gave me a hug on his way out the door, after seeing me late in the evening after performing 4 surgeries and finally able to head home to his kids and wife.

Here is his bio at the TCI webpage. Click here!

If you have Chiari, go to TCI. Start there if you can. It is so nice to be somewhere they don't ask you to explain Chiari to them :)

Take care of you,

Q

New York

Just had to share this pix with you. This is the beams from one of the fallen buildings that formed a cross they found at Ground Zero in the aftermath of 9/11.

A reminder to me that there is hope even when all seems lost.

I watched this cross from across the road for a long time. Watched people from all religions and nationalities come buy and stare at it in awe......yes, even Muslims.

If you ever go to NY, you have to check this out. Just make a left out of the subway station at Ground Zero, and follow the sidewalk around the enclosed site until you find the cross which has been moved to the church right across the street.

Results

Sorry I didn't check in with you all last night. We didn't get back from the hospital until 9pm.

Here is the jist of it.

The herniation of the cerebral tonsils into the brain stem area has gotten worse (most likely due to the tethered cord). The fluid pocket is what causes the extreeme fatigue, and it can be repaired.

Three surgeries and a proceedure should make my body more bareable to live in.

First of all, the mistakes done in my first surgery has led to the need for a revision. This is the surgery I will talk about today.....because I am a little overwhelmed, and don't want to go into all of that yet.

This surgery will get rid of the pocket of fluid collected, and will clean up my cerebral tonsils and surrounding area.

This surgery is the most important perhaps, yet also the most scary.

It will be alot like my first surgery, only longer.....and my first surgery was horrible.

However, the surgeon says my reaction to the first surgery sounds like I had a form of mennigitis post-op........so it shouldn't be as bad this time. However.........I will have to be in NY for 10-12 days.

At the same time they will be placing a drain from my brain to a little plastic bag. After a few days they will remove the drain to see how things go.

If all goes well........wonderful.

If things do not it is back to my mortal enemy........The Shunt!!! Uhhggg!!!

The surgeon is wonderful and understands my hesitation on the shunt.

He says if it has to be done it will be placed back in the paritenniel (can't spell it) cavity rather than the lung or heart....which I didn't want at all.

Anyway, this all will most likely occur sometime in late July or August.

Sorry if this sounds very sterile.........I am still trying to process all of the info myself.

Please pray about the days to come.......and my flight back to Maryland later today.

I'm Here

I am in New York learning the public transportation system. It is so expensive, however, I saw parking lots with signs saying "only $9.50 a half hour", so I am glad I decided to fly rather than drive.
Yesterday was spent sight-seeing. I went to Ground Zero. Can you believe that there is still rubble being cleaned up?
If you haven't been there it is definately a must. However, I have to say that going there doesn't help it make sense any....for some reason I think that is what I was expecting.

Today is testing day. Pray I studied well!!!
I will give you a more "Queli-type" update this evening.
Take care of you,
Q

NY Fundraising: Just da Facts

Consultation at the Chiari Institute

Date: June 24th-27th

Location: Great Neck, NY (near Long Island)

What?: Testing, and consulation with various members of medical team that specialize in Arnold-Chiari Malformation.

Cost: Around $1483. (updated amount)
Medicare pays for 80% of total cost minus a low deductable. Due to this visit being out-of-state, my normal secondary insurance will not cover the other 20%. The total cost of all the testing is unknown at this time. However, my share of just the consultation and trip itself will come to around $2.500.

Fundraising

Here are the different ways I am raising the funds needed.

1) Making Zipperhead Awareness Pins. Available for $2 each. (Zipperhead, what Chianians call themselves, comes from the zipper-like scar on the back of the head after the decompression brain surgery...and no I didn't come up with that). Email me if you are interested in pins.

2) T-shirts, sweatshirts and more available at http://www.printfection.com/acm Some are funny, some are serious, and all are meant to raise awareness. (I also designed some MS shirts for my friends out there battling that horrible illlness)

3) A Mary Kay fundraiser done by my dear friend Kimberlyn, who offered to help using one of her many talents. I will send website information when I get it.

4) Taking donations through Paypal for those that have a Paypal account. The account is under my junk email account queli.is@gmail.com. If you would like to send cash, or a check, please email me for an address.

June Update

We have raised $1135 towards the $1483 goal!!!!!!!!


The trip is getting closer: each day seeming to fly by faster as New York’s horizon becomes more clearly visible.

My nerves take me from a state of terror to complete calmness in any given moment.

Luckily, the fear only pokes up it’s ugly head for seconds. Like the flash on a camera, it is bright, bold and obvious, but gone in an instant.

For the most part, all I feel is peace.


Part of that peace is having a little piece of Arizona with me.

Jen has bought her tickets, and will be flying out a few days before we all head to the city. I am so excited to see her, and I know that her presence will be a blessing.

Already, I am able to think of this as getting to see Jen, rather than having to go through more tests. Don’t get me wrong, I am delighted that there is a place that knows so much about Chiari…….

but I have had 5 surgeries so far…..and I do know that fixes don’t come cheaply.

We pay for them with time, pain, work, and tears.

This is true of most great growth moments in life.

The fundraising is going well.

Realizing God is going to make the trip possible, I have reserved the hotel room, and bought my plane tickets.

The hotel is located only a few miles from the hospital, and only a block or two from the train. From what I understand, it is cheaper to take taxis and public transportation, than it is to drive in New York. The hotel alone, I know, was going to charge somewhere around $20 a day for parking. Ahhhh, the Big Apple, taking a bite out of the touristy worms!!!

I do want to commend the hotel though. It gives Chiari Institute patients a huge discount. Without it, I doubt there would be an affordable place to stay anywhere near the hospital.


I want to thank all of those who have contributed through buying t-shirts, pins, and giving donations.

I am awed by how God has used you all to make this trip possible.


I will try to keep you all updated as the trip approaches, and possibly even while I am in NY.

Fear

Things are coming together. I am beginning to watch this trip inch closer and closer, and the first thought or feeling, I should say, is fear.

Fear of what the tests will show.
Fear of what the doctors might suggest.
Fear of possible surgery...
But most of all,

Fear of the unknown.

I wasn't sure if I should share this with you all. But you have joined me in this journey much earlier than I typically invite people in.

I usually have an upcoming surgery date before anyone knows anything is going on....Which is why it is weird to have all of you aware of, and along with me on this journey.

But this is good.

People think I am courageous because I have been through several brain surgeries.

Ha! What a joke! I am not brave. No. not a single bit.

But that's ok, because I don't have to go through it alone.

Not only do I have all of you, who have been awesome in offering donations, support, and prayers........but I also have someone who has been with me through every step of this illness, carrying me all the way.

Some might think this is Jen that I am mentioning. And no, it isn't. Although she has been a big supporter through all of my surgeries, as well as many of my friends back in AZ.

Nope, she has been to all of the surgeries, but the only one who has been with me through every unknown, every fear, and every tear, is God.

When I think of fear, I think of the Psalms. There are a lot of great verses about fear in there. Many of them are written by David. He wrote the one "though I walk through the shadow of death I will fear no evil..."

I used to think that that David was a truly brave sole. However, it occurred to be the other day that he wouldn't talk so much about not being afraid it he truly was not.

It would be a null issue.

So yes, even David was afraid. And God addresses courage in his book also. People of faith should have courage..........which of course is irrelevant without first being afraid.

So yes, I was feeling guilty about feeling fearful, but now I am just accepting it and moving forward despite it.


I know that I will not face a single moment of the days to come alone, even when people are not right by.

So, please don't call be brave. Called me blessed.

But don't say "bless her heart", because we all know that is really an insult. It always is followed by something stupid someone has done..........and yes, I have done many stupid things, but luckily only God knows all of them, and He isn't telling.

Take care of you, and God Bless!!!

Thanks for coming along for the ride. And yes, I do feel all of the prayers :)

UPDATES

Hi everyone!

Finances: I have new calculations. It looks like medicare will take on more of the cost than originally planned. The new cost for the trip looks like $1483.
Now I have been told that I should expect another $540 added to that, from someone who has been to the institute and also has medicare.
Still, even with that added on, the upfront cost is only $2023, rather than 2,500.

Money Raised: I have raised about half of what is needed for the consult at TCI!!!!
I thank everyone who has donated or bought products so far, for helping in this pursuit. I am beside myself that so many people are willing to give of themselves to help another. This is such an example of God's grace through his people, and I pray you all feel even half of stirring that does for my heart and soul.

Surgery: I do not know if I will need surgery. This is something that will not be known until the last day that I am scheduled to be at The Chiari Institute (TCI). However, I am putting this all in God's hands, and I feel secure that he will find a way to finance that, and give me the guts to go through it again.

Updated products: I have added several t-shirts for friends that I know with other illnesses (it's not all about Chiari). There are MS shirts, and Eating Disorder Awareness shirts also available. Also look for Breast Cancer designs coming up for both advocates of research and survivors themselves.

Prayer: You would think that I had mastered having brain surgery, but it is not something you get used to no matter how many times you get it. So please pray that if this is the answer, that God will give me courage, and a little grace and humor to get through it.

Thanks everyone!

Take care of you and God bless!

Q

Mary Kay Fundraiser Information

Hello friends of Queli-
My name is Kimberlyn Cahill and in addition to being a friend of Queli, I am a Sales Director with Mary Kay Cosmetics. After hearing about Queli's upcoming trip to NY, I have offered her an opportunity for some fund raising through my business. Basically how it works is any appointment scheduled and sales generated through her distribution will benefit her NY Trip fund. Although I need to cover my costs, all the profits will go directly to Queli. Why am I offering to give Queli my profit- or what benefit do I get , you ask? Well first, the opportunity to support a sister is heavy on my heart. Secondly, if you should be in the need of a personal Mary Kay consultant, I would love to serve you now... and forever! I am in the market to expand my business and would love a chance to meet new people!

If you know you would like to purchase or try some of our fabulous products and support Queli, you can visit and even order products through my personal web site at www.marykay.com/kimberlyncahill. Or you can call me directly at 301-360-0686 or email me at kimberlyncahill@comcast.net. Please include a note that you are with the Queli Campaign so I am sure to pass on the profits to help fund her trip.

If you are interested in hosting a get together and raise additional funds for Queli, email or call me and we will coordinate a time to get together with you and some friends.

thanks so much and I look forward to serving and supporting you.


--
Kimberlyn Cahill
Independent Sales Director, Mary Kay Cosmetics
301-360-0686
Inspiring women to leadership and personal empowerment!

Back to the medical world

I have had 5 surgeries since June of 2002, and still have only a basic understanding of Chiari.
Why?
Because until now, most of the medical community I have met, don't know what it is.
Isn't that comforting.
Most doctors run for their medical books when I ask if they are familiar with Arnold Chiari Malformation.
While neurosurgeons can't answer simple questions about Chiari, they are willing to carve into my brain.


I ran away from Chiari a while back.
Unfortunately, I found out you can't run from Chiari----
However, you can hide from the doctors for a while.

I couldn't take the doctor's neurologists, and neurosurgeons (ns) any longer. Med after med, surgery after surgery........no one could mend Q.
You can fool me once, twice...apparently even five times......
But six, nah.
I have wised up by then.

This time is different though. In New York, there is a place where they do not have to look up the name in there college books. They already know what it is. Heck, the place is even named after it: The Chiari Institute.

If you have a chance, check out their website at
http://www.northshorelij.com/body.cfm?ID=6407

I can't even begin to explain how psyched I am to be going. I pray they are God's answers to many long awaited prayers.

A short story: A DAY WITHIOUT CHIARI

The story offers one a glimpse of understanding why the trip to The Chiari Institute is so exciting and overwhelming for me.
I pray that it leads to a continuation of this story.

Monday, September 05, 2005


Songs are powerful on our sensory memory. Think about the last time a tune took you back. The song Wonder does this to me every time I hear it. It takes me to a day so awesome I can’t keep it to myself. It was about a year ago. A blessing, a miracle, an act of God played out on that day.

It Was A Day Without Chiari……..

On Monday I had Chiari w/ hydrocephalus: A chronic neurological illness causing daily headaches, pain fatigue, unsteadiness, and nausea among other things. I had become accustom to my sentence which began with one short phrase from the neurologist:

“We found a malformation in your brain.”.
A what?
Where?

Sure he had a lot of other things to say that day.
At least I think he did.
I did see his lips moving quite a bit
Unfortunately I didn’t hear much through the shouts within my head screaming ‘Something is wrong with my brain?”

All I heard beyond a blurb with the word surgery in it was “blah,blah,blah,blah, blah……”
The jumbled panic-stricken deformed brain could not compute the noises into anything beyond a level of understanding one has with the teacher from The Peanut’s cartoon.

You know I could have misunderstood. Perhaps I got confused about the brain part. I asked the young doctor to repeat himself as I leaned forward, earnestly trying to hear him. He started with the part about a malformation, as he picked up something from his desk.

Crap! That is a fake brain he is holding. This can’t be good. But what is he saying? Why can’t I just shut up and listen? Oh dear Lord, is there something wrong with my brain?

After having him repeat himself about four times, watching him point at areas on a fake brain, I still couldn’t hear a word beyond malformation. My malformed brain, was not going to let me get the slightest knowledge of what was wrong with it. I had to settle with him writing down the name of the condition so I could call my primary doctor at a later date.

When all was said and done, I found myself at a neurosurgeons office. This time, I brought my friend Jen to act as a translator if my mind decided to shut off again. I left the office relieved. Everything was going to be okay. Jen asked my thoughts, and I let her know I wasn’t going to have the surgery he talked about.

“What?” She asked looking alarmed. “Why?”

“He said it was optional,” I answered, watching her face become more confused. “Well he said it was my choice.”

“Yes,” Jen almost laughed “If you don’t enjoy things like breathing or walking, then you don’t have to have surgery.”

Ahhhh! The malformed brain had struck again. Trying to protect its squishy little cocooned world, the little sucker muted out all of that information when I was in the doctor’s office.

Jen reviewed our visit, and explained that I needed surgery to help relieve some of the pressure on my cerebellum- without surgery the pressure could lead to paralysis or death. Not having much of an option, I pushed the surgery out as far as I could… I spent the next two months meeting with my pastor weekly in spiritual preparation for the dreaded brain surgery. I needed to be prepared for whatever laid ahead.



For the next two years I had five operations in an attempt to alleviate the symptoms caused by this deformation which restricted the flow of spinal fluid between my brain and spinal cord. There were plenty of hard times soothed by prayer and the support of my friends, family and church. All across the country, I had friends and churches praying for God to heal me from this condition, for which there is no cure.
And God did use this time to heal, just not in the way that people expected.

I picked up valuable lessons along the way, including the ability to reach out, trust solely God, and the art of sitting still. By the end of the two years, I realized I needed to accept that my life had changed. The pillar of hope that the next surgery would be “the one” had finally begun to crumble. Prayerfully I asked God to help me accept this and move on.



As I stated earlier, on that particular Monday I had Chiari. The following Tuesday, my new doctor (due to insurance changes at the time) called to let me know that the latest MRI indicating the Chiari was shirking. I listened nonchalantly to the nurse’s words and casually hung up the phone.

Before the phone even hit the receiver, I realized what she had just told me…WHAT? I must of misheard.

Calling the office back, I asked if I heard her correctly. The nurse laughed grabbing my chart to read off the results one more time. Confused and breathless, I asked her if this happens. Does Chiari just go away?

“No”, the nurse admitted that it was unheard of, and she seemed as awed as me.

I wasn’t sure I could make sense of what I was told. Was God healing me from something no one has ever been healed from?

In disbelief I called one of my friends. I babbled out the news as I choked back sobs. She, like the next 20 people I called, was shocked, amazed, and flabbergasted ( flabbergasted, don’t you love that word) by my news.

Sure we all believed God was powerful enough and merciful enough to heal- but could this indeed be true?

Were we actually witness to a modern medical miracle done the old-fashion way?

As I called around sobbing my news to everyone I knew they all had varied reactions. Some laughed, some cried, some laughed while they cried, some squealed with delight, and others silently digested the news. No one could grasp totally what was happening, especially me.

I felt like I was having a nervous breakdown of some sorts. I had seen the face of God and the merciful power of his glory, and frankly, I couldn’t handle it.
Unable to even stand at times, I felt weak and unworthy of His presence. I cried continuously throughout the day, amazed that God had chosen me to heal.

Why me?

There are so many others suffering from much worse. My sister suffered from a stroke several years ago. Why wasn’t she the one being healed? Certainly she was much more deserving of His touch. I felt guilty, special, selfish, loved, winded and confused. Several times that day, I barely sat down before gravity took me there; because my emotions were soaring so high I almost passed out.

I actually was not sure I could handle this miracle!

It was too glorious for my body to withstand.

The emotions were ten times greater than as if I won the lottery, because to me this was so much more important. There were other things wrong with my brain that couldn’t be fixed by medical science. And this Chiari had led to other issues with my head.

This disappearance of the Chiari could mean that these things also could be restored. Twice that day Wonder came on the radio, and both times the friends I was with turned it up, blasting the bass so all could hear. My body had become one of Gods great wonders…..

I no longer had to accept being sick, because God was leading me back to the life of the able.

I lay my head down on the pillow that night, exhausted but unable to sleep.

I was being cured!

How was this so?

What grace had been pored upon me!


On Monday, I had Chiari.
On Tuesday, I was healed.
On Wednesday my eyes opened abruptly from sound sleep to devastation.

What if the MRI was being compared to a study from two years ago, before surgery? Then of course the area around it would increase, making the Chiari appear smaller----because they took tissue out of there. Unfortunately, even though I wanted to keep a hold of God’s blessing, I knew that would make more sense than a miracle. Sitting straight up in bed, I felt nauseated as the thought occurred that the radiologist was mistaken Feeling lightheaded, I called my doctor’s office and verbalized my concerns.

The doctor on call confirmed my fears stating that it most likely was a mistake. “Things like Chiari do not just disappear.” The office offered to call back and let me know if it was not a mistake.

I waited all day by the phone hopeful but the call never came.

Drained from adrenaline depletion I picked up the phone and called the band of friends and family I had talked to the previous day.

Everyone insisted that the doctor was just being pessimistic; no one wanted to let go of the miracle.

They weren’t ready to let go. I however, realized by my drained body that I perhaps wasn’t ready for a miracle. With only one day Chiari-free I could barely stand I was so fatigued. I wasn’t prepared for the Milk and Honey, because my trip across the desert wasn’t complete yet and I knew it.

However, I also realized that God can and will cure me one day. However, it will be in his time, after he has prepared me to be able to handle such mercy without turning into a pillar of salt and crumbing from the strength of his grace.

The Chiari didn’t disappear that Tuesday, but a miracle did occur. I saw God’s hand and His power to restore. I saw hope being lifted of those around me in an instant. People forgetting their problems long enough to stop and fall to their knees in the awe of the Lord. I realized that there is a reason we are not always instantly restored through prayer. Our minds and bodies can’t always handle such miracles.
The work we are given in the meantime, prepare us for his awesome grace.

No, I wasn’t cured on that Tuesday, but I was given one day without seeing a bleak future of sickness. When I hear the song Wonder, I remember the miracle God performed that day. One glorious day, which has lifted my hopes forever. I believe this was just a glimpse of what is yet to come………………