Having One of Those Days

Today was a day when I wanted to cover my eyes and make the world just disappear ~ transporting me to another time and place. Where is that FRINGE elevator anyway? Mondays are hard for most people, but when you heap on an extra helping of stress first thing in the morning it makes getting through the day all the more challenging.

Even with heavy laden shoulders, there were bits and pieces of great news that I received ~ A month after I mailed a package off to a friend doing tribal mission work over seas, the package finally arrived. Must have gone via yak train ~ and the best part was that all the contents arrived with no pilfering. In an age of instant messaging, twittering (still haven't found a need to twitter my life away even though I have had a Twitter account for a year now), texting and emails it's reassuring to know that the postal system still works!  

Also ~ in a day and age when people with extensive medical issues (like me) face mountains of  medical bills to pay and frequent surly letters from insurance companies ~ I actually received a CHECK from my hospital ~ refunding money to me for paying too much ~ SERIOUSLY? So ~ a lil bit of good news has presently lifted my spirits enough to muster up enough strength in my completely drained body to get out there and coach cheerleading for 2 hours tonight.

First Encounter Sunset

For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Jeremiah 29:11-13

I took this picture a couple of years ago while on the First Encounter beach at sunset ~ I am in awe of the sunsets that our creator paints for us! What a gentle reminder to keep making plans for the future ~ as long as I am breathing and still on this planet I know that He has plans for me ~

There's Some Good In this World Worth Fighting For

Yesterday there was a public announcement that Dr. Bolognese ~ neurosurgeon extraordinaire has been reinstated to resume business as usual again ~ This is great news for the Chiari community. I have seen every spectrum of emotions just flooding out of bloggers across the community ~ anger, rage, fear, hopeless, dread, panic ~ I can't tell you how many of you I have talked down from the bridge ~ urging you to keep the faith in TCI ~ lean on the facts and not the feelings. Dr. B is a groundbreaking, incredible doctor ~ those are the facts ~ he has restored my health to 90% and I am forever grateful :)

Something I have learned as a brain surgery survivor and as a chiarian is that when all hope fades and all you can see is darkness enveloping you, this is when faith steps in and shines a light in those dark places. I think we all can stop holding out breaths and breathe a deep sigh of relief. I had my post op f/u appointment today at TCI ~ I have news. but more on that in another post. Just a reminder that no matter what life continues to throw me, there's always something good in this world worth fighting for ~ looking for more brighter days.

Frodo: I can't do this, Sam.

Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.

Frodo: What are we holding onto, Sam?

Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.

Leeland-Brighter Days Lyrics

Time keeps moving on
Through the sunshine and the storm
And my dreams are set in stone
And someday I’ll be who I want to be
For now I’ll wait
For the sun to shine again
And for now I’ll wait
For the rain to pass away

And I’m looking for the brighter days
When all my hurts seem to fade away
I’m looking for the brighter days to come my way

Faces come and faces go
But none seem to look my way
And walls have stood and walls have fallen
But my heart seems to wait
For now I’ll sit at the end of the road
And for now I’ll wait
At the end of the pathway

I’ll see the sun one day shine upon me
I’ll see the sun one day
And watch the night time turn to morning
But for now it all comes back around

Wonderful World News ~ Pilot's prayers answered by Jesus sign

In a world where we are bombarded with tragic news stories on a daily basis, I like to check out the Wonderful World News. This story is great ~ an immediate answer to prayer ~ don't you just love God's sense of humor!

Pilot's prayers answered by Jesus sign

By staff writers ~May 21, 2008 10:05am

http://www.news.com.au/

TWO men prayed for divine intervention when their microlight ran out of fuel mid-flight and received it when they landed safely next to a "Jesus is Lord" sign. New Zealand Pilot Owen Wilson told his passenger Grant Stubbs, a petrol station owner, to pray as they desperately tried to find a place to land, the Marlborough Express reported. Attempting to land in the hilly Pelorus Sound, at the top of the South Island, Mr Wilson guided the microlight down for a landing."When you're in a microlight if you crash, you usually die. I turned to O.B (Mr Wilson) and he said we had no fuel," Mr Stubbs said." I asked what we should do. He said: 'You just pray Grant."'

As the plane descended they saw they were about to land next to a sign reading: Jesus is Lord – The Bible. "When we saw that we started laughing," Mr Stubbs told the Marlborough Express. The men had landed at Tira Ora Lodge, which is run by a Christian couple, and were greeted by the property's animals including emus, goats, deer, wild horses and donkeys. Mr Stubbs said he saw the irony having 200,000 litres of petrol at his work but none with him in the sky.

The Ball Is In My Court

The past several days have been a whirlwind and I apologize for not blogging sooner. Last Saturday we drove down to Brooklyn to celebrate my nephew's first birthday. After a long day of fun we drove back home and then packed bags and headed back to Brooklyn on Sunday afternoon.

Monday morning began with an hour spent in a MRI machine to get a look at my brain tail. We had seven hours to kill until my neurologist appointment at TCI, so we looked on the map and found a state park nearby. The sun was shining and it was a good day to spend some time outside. We picked up some sandwiches for lunch and headed over to the park. After a little hike in the woods and a brief encounter with a ribbon snake we ate lunch and enjoyed the day for a while.

Then we headed over to TCI and waited and waited for our appointment. So the verdict on my health ~ I am healing up nicely from the tethered cord surgery. I can expect about a year until my back feels 100% again. As far as my MRI films go, my herniation now is about at 12mm ~ which according to my calculation is 2 mm more than it was last April. I am still shocked when I look at the MRI scans of my chiari ~ there is brain matter stuffed into my spinal column like a tightly fitting cork ~ it's just not right ~ it shouldn't be there! My brain stem measurements had decreased a bit which is great news and probably the reason why a lot of my symptoms, especially vertigo, have vanished.

So what's the prognosis for a decompression surgery? Well, basically the ball is in my court. I am definitely a candidate for surgery, but it's my decision when to have it done. (Is there ever a 'good' time to have brain surgery???) I should feel tremendous relief, but I don't. Why? I am still experiencing crushing Chiari headaches, blurred vision, my neck is still popping and cracking when I look from side to side. So I guess I have resolved myself to waiting ~ wait and see what happens. I don't understand why I have come this far with my struggle to have it fizzle out at the end. I am completely prepared for brain surgery but for reasons beyond my comprehension it's not in God's plans for my life right now. ~sigh~

Good Mail ~ Bad Mail

I got a couple of letters in the mail today ~ two from my insurance company and one from the records department from the hospital where I was detethered. I always get a sick feeling in my stomach when I see letters from the insurance company. They were my giant to slay for so long ~ it's hard for me to have a complete attitude change towards them now that they are supporting me 100%. Actually ~ the last conversation I had with my out of network coordinator was almost comical. I really had to keep myself from laughing out loud on the phone.

I had called to get pre-authorization for numerous MRI's, a CT scan and a neuro-followup appointment in May. Her reaction was comical ~

"Certainly ~ just let me know what you need and I will write up the auths for
you. You know, people who come to us with Chiari (she pronounced it like
'chair-y') ~ we always send them to TCI ~ they offer the
most excellent treatment there!"

For those of you who have been reading my blog since the beginning, you know that it took a year and a half to get approved to go to TCI. I clearly have educated the insurance company and have hopefully paved an easier road for others in their journey to get to TCI. Anyway ~ the letters I got from the insurance company were approved auths for my appointment in May ~ yeah. It's so nice to get pre-authed without the whole red tape drama!

About 3 weeks ago I had sent a letter to the hospital requesting copies of my medical chart so that I would have the medical terminology for the findings during the surgery. Today the letter I received told me that in order for them to release my files I would need to send them payment for $123.55! SERIOUSLY ~ these are MY records ~ do copies and shipping really cost that much! How big is my file?! Anyway ~ maybe I will save some $$$ and see if they will let me read my file while I am in town for my appointment. What a conspiracy!

When I woke up this morning I was rudely reminded that my brain tail is still alive and kicking ~ me in the head! Go figure ~ there's a low pressure front moving in bringing frozen precip and rain tomorrow! Wish I didn't have those friendly reminders ~ I would like to just forget about my Chiari all together! The prospect of brain surgery still weighs heavy on my mind, but truth be known, even if I do have surgery there's no guarantee that I will not have any more headaches. I will have some peace of mind after my follow-up visit at TCI in May. Sigh ~