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

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.

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.

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

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.

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.

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