Tuesday, July 25, 2006

We got back from the doctor a few hours ago. He did listen. I didn't have to throw a punch. He sat down and listened to everything I had to say. He suggested the nerve stimulator (since this last surgery didn't help... and made things worse). He suggested a spinal tap to measure my fluid and drain some off. He suggested a shunt revision. Then he listened some more when I told him I didn't want anymore surgeries that were going to make my problems worse (i.e. the chiari decompression and the last operation... greater occipital neurectomy). I told him two other doctors no longer felt comfortable doing spinal taps or even taps in the shunt in my brain because the fluid is "thick" and "sludgy" which means leaving me open and drainging for an hour and a half increasing the risk of great infection.

Then he asked me what I wanted him to do. I told him, "Nothing." There's nothing he can do to make it better. He quietly nodded and agreed and said the suggestions he made were just that. He didn't recommend any of it. There's nothing he has that can or will fix me. But he did have a full box of Kleenex to kindly share... and he handed them over with a regretful smile.

He wants to see me every six months to a year.

So that's that. There's nothing left to do. This is the second neurosurgeon to say (admit) what I've known for years. And this one sure didn't like admitting defeat. But there comes a time when even modern medicine can't cure. Another shunt will fail because my ventricles are too tiny. It's like putting a straw under a tire and expecting it to drain water.

The only thing left is to have my skull removed. I just can't have that operation. The three small sections I have right now without skull make me paranoid. I've been to the emergency room twice after being hit in one of those spots. I'm not ready to live with a helmet for the rest of my life. And if were only that simple. If wearing a helmet was going to take the pain and nasty symptoms away I'd do it in a heart beat. But there's more involved than putting on my son's old football helmet and living life up.

So I'll continue to be my wacky little self. I'll continue to experience the symptoms just as if I had an actual brain tumor. I'll continue to live with severe pain daily, at times excruciating. I'll continue to hold my own head up because my neck's too weak to do it. And with humiliated and humbled expressions I'll continue to ask my baby boy why the sheets are covering the couch or why the milk is under the sink. And he'll continue to hurriedly run back to my bathroom to ask if I'm okay when I'm falling in the shower. We'll continue to clean up water because my hand can't hold the glass. (And I'll switch from glass to plastic so I no longer break 8 glasses a day.) And I'll continue to depend on my parents for most things and sit in the house 24/7 and go to the grocery once a month because that's all I can physically manage.

And I accept that. I don't like it. Any part of it. I don't like that it not only affects my life, but my Jacob's. That I can't do things with him or take him places or have his friends come over. I don't like that I can't even stand long enough to make him dinner or fix him breakfast. I don't like that my parents have to cook for us. Or take us places because I'm not able to drive (for the past four years). I don't like that I can't visit my sisters just an hour away and play with my niece and nephew. I don't like that I don't get to visit with my friends because I don't feel well enough to talk and laugh. I don't like a lotta things about these horrible symptoms or the diseases that cause them. But I do accept what God has given me. And I try my best to honor Him and witness for Him and use my life as a testamant of His love and grace. I am drinking from my saucer because my cup has overflowed!


Blogger FrogLegs said...

I have no words-- but plenty of prayers... for everyone- you, doctors (to listen to you and accept what you say) your son, your parents, everyone... I'm still trying to catch up-- I have internet for real on Thursday-- but my heart slumped to see that the last surgery never "worked" even a little... Many thoughts & prayers

12:27 AM  
Blogger Chana said...

no matter what if any i really have had to physically endures, it is nothing at all compare to what you have had to live with. i love you because of your heart. because you are a wonderful mother. because you can write a book of inspiration and acceptance. i love you because whether you know it or not i learn from your stregnth and spirit. that which looks forward and takes a step whenever possible moving ahead.

i'm so beyond sorry that i or anyone else To This Point cannot make it better. i say to this point because things and technology and medical advances to go forward to. and someday my dear, my sweet friend, someday you will have some relief of the horrid suffering you endure daily.

i know what a wimp i am. i know how much i complain. i know how easily i scare. i know how easy it is for me to hide from 'it' and play dumb. you are all the exact opposite. you are strong and brave. with all your sufferings you manage to still be the most wonderful mother to that hunk of a boy. you don't hide behind excuses of pain to be negative or a grump. i admire that.

i send you my heart. as is but it is yours. i love you. i promise to always be here. for better or worse, richer and poorer to death do us part: they are great words of love. not just for marriage but for commitment and caring too.

2:49 AM  
Blogger ...jus me said...

Oh Kimmy, I just want to hug you and make it all better! I am so sorry that the doc didn't have a miracle for you. But you know there is only one who can make that happen! I will pray for you girlfriend! Don't forget that God has a plan for you. Whether or not that plan includes a miracle, well, only God knows the answer to that, but it sure does not hurt to ask. We love you and Jacob and Snickers very much. Take care!
p.s. I love the picture!

3:26 AM  
Blogger Libragirl said...

I don't know what to say except I'm sorry there isn't anything that can be done.
Maybe one day, the doctors will discover something and be able to help.

5:14 AM  
Blogger LadyBugCrossing said...

Oh dear... well, at least you have some answers. Not exactly what you wanted, but answers. We are all thinking about you and praying for you.
Do keep us posted on how things are going.

8:23 AM  
Blogger Pink Chihuahua Princess said...

I'm so sorry that there is nothing else they can do. But, I am thinking about how fortunate you are to have your parents and such a loving son, and of course Lil' Snickerdoodle. Best wishes to you honey.

9:31 AM  
Blogger It's a FLIP-FLOP World said...

I wish that I had some comforting words to leave here for you. I wish that I could come and hug you, be with you and help in some physical way..but you know that I can't. I am sitting here with tears rolling down my cheeks. I feel so badly. I know that you do not want anyone to feel this way but I have so wanted for things to get better for you.
You have tried so hard but in a way to know how things stand...well that is better than not knowing. At least it would be for me.
If anyone has to hang on to their faith and belief you now have to do just that!! I so hope that you can keep in touch with everyone or have Brandi do it for you. I feel like part of your family since I have
gotten to know you here in blogger land.
I will pray for you Kimmy..for you and Jacob. This is going to make Jacob a very responsible, loving man I am sure. God has a plan in this which I know you already know.
You have to take just one day or maybe just one minute at a time.
God Bless you!!

9:46 AM  
Blogger karen! said...

Oh man! I hate when things can't be fixed!
I wish you little pain and a good night's sleep.

12:22 PM  
Blogger Shelli said...

God, Kimmy. I am so sorry. I wish I could do something, anything, for you. You are in my thoughts and prayers. I love you, girl.

7:05 PM  
Blogger Virenda said...

With tears in my eyes I type this message speechless and with a heavy heart. I am so sorry for what you have to go through and the way in which you live your life. I wish that I could give you my body or take your pain away. I would.

Your son is a wonderful boy, who will turn into a wonderful man because you are a wonderful mother. Wonderful mothers aren't just moms that can walk around but moms that give their hearts to their children.

I want you to know you have a friend in California that thinks about you and wishes you only the best and hopes that things will become manageable.

Sometimes when we pray for things to get better, we get strength in return.

Love you sugar.

1:27 AM  
Blogger Carmen said...

kimmy, I'm so sorry that you have to go through all of this. I wonder if a pain management clinic could help you? Acupuncture? I don't know.

But you have wonderful things -like the two in your photo - to make you get up every morning.

8:36 AM  
Blogger Reverberate58 said...

Kimmy I know you don't want my tears so I will keep them. But I will continue to give God my prayers for you and yours. Your strength at this just amazes me and makes me feel very ashamed that I whine about such tiny things! Take care! And continue to let God take care of you!

9:49 PM  
Blogger Froggie said...

You are in my prayers that something can be found to take your pain away.

7:59 PM  
Blogger Irish Church Lady :) said...

{hugs} don't know what else to say.

11:11 AM  

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