I Hear You ~

~ Sigh ~ About an hour after I posted my first blog today, TCI called me. I guess miracles still do happen today. Long story short, they were more than willing to schedule my TC surgery, but only after the insurance company's full approval has been granted. D0 fairy godmothers grant wishes to brain tails?

Anyway, they faxed over the doctor's notes from my visit. I was a little surprised to read that a sense of urgency was missing from the 10 pages of information. The insurance company has three days to make a decision to certify my surgery. I am sure that this is one of many stepping stones along my journey. So ~ again ~ I release this into God's hands, and I will assume my perch on the log and wait some more.

BTW ~ a friend of mine recently sent me a story about frogs and it has given a whole new meaning to the little green guys: (F) Forever (R) Rely (O) On (G) God

Just Wait ~ Are You Kidding ME?!?

We've all been there at some point in our lives ~ you are waiting with great expectation ~ staring at the phone ~ willing it to ring! Anytime this century would be just fine with me!

Please ~ don't leave be hanging here ~ I don't know how much longer I can hang on ~ the frog in the picture empathizes with me ~

I called TCI over a week ago ~ left my contact a message that I wanted to go ahead and schedule the tethered cord surgery. What's that? Can you hear the deafening silence on the other end of the phone ~ nothing ~ no acknowledgment phone call. I know that they are super busy, but right now, I could use a healthy dosage of validation. I feel as if I have gone on a rappelling excursion. I have leaned back ~ parallel to the ground ~ I am totally trusting the rope ~ I have taken that first, terrifying step off the ledge ~ and now they tell me to hang on a minute. SERIOUSLY?!!

The Bible mentions 'waiting' many times ~ here are a few verses:
Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.

Isaiah 40:31
But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

And so ~ I wait for a call from TCI ~ and hope that after all of this time I have spent waiting ~ I will still be of good courage and have found new strength ~

Time Well Wasted

Just this week, I have come to the realization that I am in a state of massive withdrawal! SERIOUSLY! No ~ maybe I am in mourning ~ where have all of the familiar faces gone? McDreamy, Meredith, Bailey, George ~ Allison and Joe ~ Jack, Kate, Sawyer, Desmond, Hurley. Charlie ~ The Walker Clan ~ Men In Trees ~ Ugly Betty ~ Liz Lemon & Jack Donaghy ~ Claire, Hiro, the Patrelli brothers, Parkman ~ Pam, Jim, Dwight, Michael ~ Grissom & Sidle ~ SERIOUSLY!

I am awestruck by how much time I spend getting to know all of the characters in the shows I watch, but then again, all of this abuse of the DVR has been quite therapeutic for me. Since I found out that my Brain Tail has moved into my spinal column ~ it has occupied my every waking and sleeping thought. I don't enjoy being so in tuned with myself ~ so self absorbed in every physical symptom caused by said Brain Tail. Escapism has been my ticket away from myself, if just for a couple of hours ~ let's call it 'self medication'. It's a good coping mechanism so I don't drive myself completely coo coo! But what in the world am I going to do while my TV friends are on their summer vacations????

We are moving in 14 days ~ maybe I should use my new free time to throw some stuff in boxes ~ brilliant idea. But SERIOUSLY, I feel as if my TV friends are actually my friends. How sad it that?!? I tune in each week to see what kind of decisions they are going to make, how they are going to embarrass themselves, how will they resolve conflicts ~ good stuff ~ Maybe I will spend more time blogging this summer ~ anything to keep my mind off the waiting game with impending surgeries.

So ~ what do you think? Have I been wasting time or has it been time well wasted?

Echoing Messages

I am a firm believer that the Holy Spirit is God's messenger. Of course, He has to get pretty creative to be able to get the messages through to us ~ sometimes we can hardly see the trees for the forest!

Over the past couple of months, the same message has been coming to me through different sources and translations ~ but I am astounded by the resonating message ~

"When I am weak you are strong"

"He said to me,'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong." 2 Corinthians 12:9-10

I always thought this verse was figurative not literal ~ but as my strength waxes and wanes ~ it has become a literal translation for me. Personally, I can't rely on myself right now to be strong ~ that doesn't mean I won't put up a good fight, but I need to lean on someone who can be my source of strength. All of this is quite the humbling experience. I pray that after my physical strength returns one day that I will remember this feeling that I have now and never forget it!

Dandelion Soup

I went on a run after work yesterday ~ I know ~ doctors orders are to cease running on hard surfaces ~ but I am stubborn and don't do anything cold turkey. Anyway, back to my story, I was enjoying the sunshine on my face and noticing that my legs were beginning to feel like bags of concrete, when something out of the corner of my eye caught my attention.

I focused my eyes on the moving object and I found myself watching
a cottontail bunny running as fast as her legs could carry her across the street. I politely gave the bunny a nod and said, 'Well hello, bunny rabbit!' What was so priceless about our meeting was that she had a perfectly picked dandelion in her mouth. I am guessing that she was on her way to feed her baby rabbits some dandelion soup. Since the animal kingdom has been speaking to me more loudly lately, I looked up the meaning of the rabbit totem and found that they often represent fear and overcoming limited beliefs. Maybe it's a sign to be more open minded and put more faith in the unseen.

May God Hold You in the Palm of His Hands

I had a humbling moment yesterday after I spoke with my insurance company about the possibilities of three surgeries down the road. My case manager shared with me that she has a son that had decompression surgery when he was two. What are the odds that my case manager would even know what a Chiari Malformation is much less a personal connection!?!

I relate well to visions in my head and the vision of God holding a baby sparrow in the palm of His hands came to mind. He does take care of the most minute detail in my life that continues to reaffirm me that I am being taken care of in every way possible.

Fallen Into Shadow

There is evidence of shadow in my life ~ a great decision weighs heavy on my mind. Throughout my life, I have been an impulsive decision maker. Not about what kind of CD I should buy, but decisions about the big stuff ~ relocating to a different state, changing jobs, buying a new house, and matters of the heart. A swelling feeling will come over me ~ my heart races ~ I will get a feeling in my gut that tells me to act now ~ don't think ~ just do it! And yet, right now, I would give anything to have that feeling about my brain.

Maybe I am still in a state of shock. If the powers that be are saying that I need three surgeries, then why don't I feel worse? Where are the alarms and the flashing red lights? Could their diagnosis be way off? Were they smoking crack the day I visited their office? My faith is being tested. Maybe this is one of those times when I should be still and listen to that small, quiet voice that I can only hear when I slow down enough to hear it.

Falling into shadow does not really feel that good, but a shadow shows evidence of the sun. You can't have one without the other. The colors of the ocean come to mind. I'm talking about the vast range of colors that you see ~ blues, greens, aqua ~ the bands of colors blend together seamlessly. I have a feeling that one day I will wake up and just have the answer I was looking for, much like the blending bands of colors in the ocean.

Protected From the Storm That Rages

A week has passed since my visit to the Chiari Institute. The shock is beginning to wear off, and now I am faced with trying to make sense out of all the information I received. Although I did get some pretty clear answers, and THREE surgeries are on the table, I am not quite sure what to do. What would you do? I am thankful that I "have time" to think about what the next step is. I'm not being forced by anyone to do anything right now ~ but on the other hand I wish someone would make the decisions for me.

I feel as if I standing on the bank of a turbulent river. Once you take that first step, you are going to get wet ~ there's not doubt about it! There are just so many things to be considered with the risks of the surgeries and will they actually alleviate my symptoms for good? If not ~ why would I put myself and my family through all of this pain? So, while I am mulling over the pros and cons ~ I take great comfort in music. Funny how sometimes they just speak to my heart ~ like they were written with me in mind. I do have a hiding place ~ and I am learning to trust God more ~ but it's not easy...

Hiding Place ~ Steven Curtis Chapman

In the distance I can see the storm clouds coming my way, And I need to find a shelter before it starts to rain, So I turn and run to you, Lord, You're the only place to go, Where unfailing love surrounds me, When I need it most. You're my hiding place, Safe in your embrace, I'm protected from the storm that rages, When the waters rise, And I run to hide, Lord in you I'll find my hiding place. I'm not asking you to take away my troubles, Lord, Cause it's through the stormy weather I'll learn to trust you more, But I thank you for the promise, And I have come to know, Your unfailing love surrounds me,When I need it most.

Triple Threat

For one of the first times in my life I am trying hard to wrap my mind around the information we received yesterday at the Chiari Institute. First of all, I was feeling a little out of place once we finally got there. Let's face it ~ there are many people who are worse off than me. I work full time and although it might be a little hard at times, I still manage to run a 5K a couple of times a week ~ definitely NOT the picture of someone in critical condition.

The first person I saw during my stay at the Chiari Institute was a nurse. She spent an hour with me doing a full medical history work up on me. Next, I spent time with a neurologist, who after examining me, wrote me some scripts for some high powered medication should the need arise to take them. Then he explained that someone who is very highly skilled at determining if someone has tethered cord syndrome would be looking at my spinal MRI and then crunch some numbers to determine if I had it or not. I kind of nodded politely when he was telling us all of this information. I had been tested for this and wasn't really showing many signs that I might have it ~ so I wasn't overly concerned. We then had a break until 4pm when we would meet with the neurosurgeon, Dr. B. It was lunch time so we walked down the hill to a cute Italian bistro for a bite to eat.

The day was going good so far, we hadn't learned anything new, but it was extremely comforting to be talking with the chiari experts about my symptoms and condition. We were busy eating lunch when I got a call on my cell phone from Dr. B's assistant ~ she sounded urgent on the phone ~ she asked where we were ~ they needed us NOW! So, we paid the bill and headed uphill to the institute. It was 1:30 and Dr. B was ready to see us. We were thinking, this is great news, he's early and we will be getting out of here and on our way back sooner than expected. I was so not prepared for what came next.

Next thing I knew, I was meeting the world renowned Dr. Bolognese. I liked him immediately, he was smart and witty, yet professional. Then, we realized that we were headed up Shit Creek ~ He proceeded to tell me that I am basically a "triple threat" ~ not only do I have a significant Chiari Malformation (yes ~ I already knew that!), but I have Ehlers Danlos Syndrome and Tethered Cord. We both looked at one another, eyes wide open, feeling like we just had the wind knocked out of us. Then Dr. B told us his surgical plan for me was to do THREE surgeries ~ not one, but THREE!

The good news ~ I am trying to look at the positive side of this ~ is that I am in no immediate danger of permanent damage. The ball is in my court ~ more like an elephant than a ball. It's going to take some time for me to digest this new information. So ~ we continue to play the waiting game ~ all the facts are on the table ~ I am praying that I will get a clear sign so that I know when the time is right to get started on the surgeries. Where are those $%^&*$%^#$ paddles when you need them?!?

I Will Praise Him In This Storm

I am a spiritual person, but it seems like right now the word of God speaks to me louder and clearer than ever. I take great comfort in hearing the voice of truth. Just this morning at church, the sermon was about when some of the disciples went out in a boat with Jesus and a big storm came upon them. Jesus was sleeping and they woke him up, terrified that they all were going to die. They asked him if he cared about them ~ how silly that question must have sounded to him. Of course he cared about them and wouldn’t let anything happen to them, he was the Son of God, after all! The image of Jesus there, sitting in the bow of the boat ~ amidst the storm raging all around the tiny craft ~ is very comforting to me.

All though I am feeling much like the disciples on the boat that day, I am reassured that He does care and I am not alone. I don’t want Him to take away the storm. Being with Him in the storm draws me closer to Him. I will praise him in this storm. I know I can weather this storm, as I have done many times before. I am a survivor ~ I draw strength from my weaknesses ~ I will endure this time of trials. That doesn’t mean that I will like it, but I know in my heart that He has great plans for me while I am on this planet and it’s not my time to leave yet.

This Tuesday, I will see the Chiari experts, and hopefully any questions I have will be answered. They will be able to give me the big picture on what lies ahead of me. Very soon, I will have to commit or not commit to having brain surgery ~ yikes!