Wednesday, February 13, 2008

onward and upward

thanks, my dear friends and readers, for your comments and emails. I am doing much better.

Yesterday was so emotional for me. I realize now that I hinged everything that I want (my health, no pain, being able to travel someplace beyond 30 minutes away, being able to perhaps raise some chickens and goats, being able to hike, to drive, to lose weight, to play my banjo again) all on the surgery. I had been told way back in January of 07 that I needed the fusion. I'd been told to have six months of bisphosphinate treatment and then we'd have the fusion. I'd gone through the tethered cord surgery and heard that the fusion would come next and do me a lot of good. All of these things were true, but the timetable was not what it all sounded like to me. When you don't have the best communication, you tend to fill in the blanks yourself.

I psyched myself up for the surgery, as evidenced in these pages. I knew it would be hard to endure so, in order to move ahead with it, I had to mentally list, every day, all the good things that would come out of it, most of all, that my life would be safer (while in a car) if I would just suck it up and go through with the surgery. Like a coach screaming from the sidelines of a major game, my psyche was cheering me on, talking me into it, leading me toward victory.

I have no idea what my neurosurgeon wants for scores on my DEXA scans, but if he wants 100% of normal, my hematologist already told me that I would never get there. That is the reason I am very skeptical that I will ever have the surgery.

I do understand. I've heard that you can have one reading at a certain part of your spine, and have something much worse in another part. My lumbar spine was tested and it came out 88% of normal for someone my age (I mis-wrote before when I said that it was 92%). It is entirely reasonable to assume that my Cspine could be worse. Especially when my C1 never fused.

It was my job to talk myself into the surgery, but it's my surgeon's job to use common sense and to keep me from experiencing a failed fusion. That was always my fear anyway. I know people who have had their hardware removed, and one patient I've been told of, who went through the fusion, also experienced failure and will be in a halo the rest of her life.

After I wrote last night, I went to bed and slept really well. Waking up in my own bed in the morning is such a joy. Not sitting up for a couple of hours in the middle of each night is unusual. I felt very blessed this morning. And I felt (and still do feel) at peace with it all. And I feel happy that I'm not going for the fusion next month, and I'm not going to be in a halo. I have a good life, a wonderful husband and partner, a comfortable home. Much to be thankful for. God has a reason for all of this.

I put my hope too much in one man, my surgeon. When my hope should always be in my eternal Father. Of course, I was sure God was using the good doctor. And my praise was always for Him. But when we take away ALL that man can do for us, that is when God can work. Now that I have reached the end of my road in terms of treatment for my broken neck and dislocated skull, now is the time for God to perform miracles. He already has, so why should I ask for more?

I need to research online about the pamidronate treatment, as I've learned some new information on it recently and I'm not sure another course of it would be healthy for me. I need to talk to Dr. Fu and let him know what was said by my surgeon. However, I am imagining that what the surgeon asked for, 12-18 more months of bone therapy, will simply mean me continuing the Actonel I've been taking for over 4 years.

I need to cancel the gig in California. I was silly to get my hopes up over that. It all seems so silly now. To say yes to it and then write that it was a goal for me to work toward. That part of my life must be done.

Life is good, but it can also be so hard. To be in such pain and to be in danger and yet, to feel rejected and set adrift, it's emotionally a challenge to deal with. It's an adjustment. It's just one of those curve balls we get thrown in life and we try with grace and dignity to get past it. And to always always say, God has a plan. God has a plan.

1 comment:

Zoe said...

Dearest V,

I had no idea~ I've finally gotten to your blog and have been reading backwards~ loving every minute of it~ and admiring your spirit-

To face life without the surgery- I don't know what that means, although, I'm sure you understand I'm contemplating the same things...
{{{{{{{{my sister!}}}}}}}}

I am grasping at straws, so you'll have to forgive me- but have you done any inquiry on prolotherapy or cold lazer treatment? Lord! there has to be something!

Yes, life is good, even as it is-
I agree- but my heart is wrenched -
for you in the desire that your vitality might be restored.

I shall pray for you. I know we serve a risen Savior~ and with such - always have reason to hope -
May your arms be strengthened tonight,
Your heart be healed,
Your head, be lifted-
for He is our God*
our Healer*
and the lover of our souls*