A Very Brief Update

First things first....I am settled into a room, 5 hrs post myelogram and doing great. They gave me a little less contrast this time, I was SUPER hydrated, and I have been upright as much as possible. I think the combination of the three really made a difference. Yes, I feel yucky with a headache (different than the spinal headaches) and some nausea, BUT, so much better than the 2 previous myelograms. Seems that all is clear (Mere hates it when I say stuff like that....she is really into Murphy's law). I think my pain tolerance is really getting better.

Now, we wait. I have no idea what the myelogram showed. I don't know if I will have surgery or a blood patch. I am leaning towards blood patch. Dr. S will come in sometime tonight and tell us the plan. I have learned that he just kind of whips in and out and you never really know when he will appear.

Thanks to everyone for all the prayers, meals, and love. We are SO LUCKY!! I just got to skype with Mere and Syd (Layne in bed) so I am loving life.

Here I Go Again......

Tomorrow we go back to LA. Mere is staying with the girls and Tommie is going with me (again). The place where time crawls and I get stuck with lots of needles. I'm not really sure what this trip with bring. All I know is that I am having a myelogram on Tuesday. They are pre-medicating me with steroids and B.enadryl and keeping me in the hospital overnight. I'm also still on D.ilantin so I am really hoping there is no seizure in my future. Someone asked me....how can you be so scared of something that you don't remember? I don't know. It is strange. I do remember a few little moments but it is strange to be so scared of something that is largely removed from my consciousness.

I am scheduled for surgery on Wednesday. Rather or not I will actually have surgery, I don't know. I'm thinking that if the myelogram is normal then they will do a large volume blood patch. The truth is, I have NO IDEA. What I do know....I really don't want to go again!!!!!

We are so blessed with amazing friends, family, and church.

I'll keep you posted.....unless I'm on a morphine drip.

To Seize or Not to Seize?

We (Tommie and I) leave on the 22nd. Mere is staying with the girls. We can't keep uprooting them. As much as I want her there (and she wants to be there) we can't put what we want before the girls. They need SOME stability right now. Their lives have been turned upside down over and over again.

I have a myelogram scheduled for the 23rd and surgery or blood patch or whatever on the 24th. I am still waiting to get all the details. The scheduler called me last week to schedule everything and I asked her if they were going to observe me in the hospital overnight after the myelogram since I had a seizure after the last one. She wasn't sure and put me through to the NP to ask my questions. I'm still waiting to hear back...........

Which leaves me plenty of time to ruminate about myelograms and seizures. I did some research and it turns out that the chance of having a seizure after a myelogram is 0.15%. Yes, you read it right....0.15%! Why can't I beat the odds at a casino or the lottery? I don't want to be the patient that has the rare complications, this is not my goal. I did find out that the propofol they used to sedate me is sometimes associated with increased seizure risk AND it was the only thing different about this myelogram and the 600 others I have had. I also found out that being super hydrated will decrease the nausea and help the dye move through your system quickly. Oh yeah, and putting your head up after a myelogram so the dye can drain away from your brain (I always lay flat because it usually feels better to be flat) will also decrease the tiny chance of a seizure. So my plan is no sedation, drink water and gatorade like crazy for the 24 hrs before the myelogram, and sit up after the myelogram. The only one of those options that doesn't sound painful is the water/gatorade part. I am also still on seizure meds which should also help.

When all of this started, a seizure was the last thing I was worried about and now it is at the top of my list. I don't remember the seizure, I just remember the fear and confusion as I started to wake up and the macerated tongue. I watched some grand mal seizures on u.tube and really felt like I was going to be sick. I. don't. want. to. do. it. again. I'm not afraid of dying or even having physical limitations but the thought of not having me, MY thoughts, MY brain...that does scare me. I haven't let myself stay in fear for very long, but this time I'm having a hard time getting away from it. I've heard it said that you can't have fear if you have faith. I guess my faith is starting to wobble....at least today.

Where's Tommie??

So, for those of you who have known me awhile...the appearance of Tommie in our life has probably seemed sudden. Ok, I know it has seemed sudden because a lot of you have told me. I have heard from more than one person, "who is Tommie?" We met about a year ago and our friendship has just happened. The only explanation I have is that there are some people you are just supposed to know....she must be one of them. One of our closest friends keeps saying, "she is family and I haven't even met her yet." Which has started a joke that Tommie is not real. So, this is for you Linda......until you can meet in the flesh you will just have to trust that these pictures are real (and not me with a cardboard cut out)!!

Balance Beam

I had to get this one down before I forget it.
We were driving in the car the other day listening to a kid's cd. The song was about a kid practicing on a balance beam and saying "I'm getting better every day." Layne got really excited from the backseat and the following conversation took place:

Layne: "mommy, this is your favorite song."
Me: "Really? Yeah. OK. I do like this song" (I had never heard this song before.)
Layne: "Because it says I'm getting better everyday, like you."
Me: "You're right Layne. I am getting better everyday."

OK. So maybe I was wrong about her not really understanding that I'm not 100%. I guess I don't give our sweet, smart 3 year old enough credit. I just want to shield them from any worry, fear, and general bad stuff. But, in this situation....it is just impossible. Everyone says, "it is good for them to learn these lessons now." Really? I don't think so. I think it is good for kids to be kids and not worry about adult things like leaky spines, financial woes, and death. No, you can't protect them from all bad things BUT I REALLY WANT TO!!!

I'm worried that Syd is going to quit believing us because everytime I go to LA I tell her I will be better when I get back. Obviously, that has not been the case. I think this time I will tell her that I will be better eventually but I'm not 100% sure that this will be my last trip to LA.

Everytime I hear Syd tell Layne, "we will do that when mommy gets better" a little piece of my heart breaks. For now I am trying to do as much normal stuff as I can with the family. Cook dinner, eat with them, make lunches, help with homework, go to cheerleading games, etc. Things that I can do if I'm fortified with pain meds and a way to put my head down after about 2 hours. Now that I know bed rest doesn't help and being up doesn't hurt.....it is just a matter of how much pain I can tolerate before I become a complete bitch.

My spine might still be leaking but maybe I am getting better at walking on this balance beam.

Bigger Than My Body

Ok. I am not really a J.ohn Mayer fan. I don't have anything against him, I'm just not really into his music. I don't really know his songs or much about him. I woke up this morning with this verse in my head, "I'm bigger than my body gives me credit for." Weird. I haven't heard that song in a long time. So, I decided to look it up and listen to it. First, I looked under D.ave Matthews Band because that is who I thought sang it. See....I really have never had ANY connection to this song except for hearing it in passing on the radio. When I looked up the lyrics, it kind of took my breath away,

"This is a call to the color-blind
This is an IOU
I'm stranded behind a horizon line
Tied up in something true

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
Cause I'm bigger than my body now

Maybe I'll tangle in the power lines
And it might be over in a second's time
But I'll gladly go down in a flame
If the flame's what it takes to remember my name

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body
I'm bigger than my body
I'm bigger than my body now"

Also, this morning I was doing some reading and came across this quote from Thomas Merton, "I am nothing. It is not my job to understand."

So, that is what I'm going with. I'm bigger than my body gives me credit for and it is not my job to understand.

New name

I think I should change the name of this blog to, "The Headache" since that is what I have been talking about since October....yes, October!!! Ughhhh!!!! But, I want to chronicle this journey because I do think it will end EVENTUALLY and I want to remember the life lessons I am tired of learning.

So, long story short, the headaches are not gone. The post op pain has gotten MUCH better which means I can now tell which pain is which. When I lay down, not much pain. When I stand up, pain. It really is that simple. I can make it through several hours (almost an entire day) armed with pain pills and the ability to lay my head down when it gets really bad. But, by evening I. have. to. lay. down. There is NO way to avoid it. I even got to enjoy some of the nausea and ear popping today because I really pushed it to far. I can't really concentrate on anything serious for any period of time, which makes work impossible and the pain always reaches a threshold where I get really snippy. I have emailed Dr. S and the plan is for me to wait another week (after this one) to make sure and to let me continue to heal from the last surgery before going back to LA. The writing is on the wall, I know I'm going back. I have no idea what the plan will be this time. Truthfully, it doesn't matter. This is my only option. I have no control. So, as they say on AI, "you are going to Hollywood." This time Mere will stay home with the girls and Tommie will go with me the entire time. We can't keep uprooting the girls and LUCKILY Tommie offered to go again without me asking (I had ZERO intention of asking her to do this AGAIN). At this point in time, she knows all the doctors, the hospital, and the whole routine. And, having her there really is perfect (for me, not so much for her). Sometimes people are just put in your life and it just works. I'm just going to go with it.

I have spent a lot of time in fear of a lot of things. Mostly, that Dr. S won't be able to fix me, I won't be able to work, and I will always be in pain. For some reason, those fears are leaving. I have a deep, abiding faith that just won't let me believe that I would be brought this far and not be able to be a doctor, a mother, a wife, a friend, a daughter, a sister. I will have so much to give after this experience. So much to give back. I'm ready to get on with it! Unfortunately, I have learned that my timeline is meaningless.

I have spent my life planning. Setting goals, meeting goals, and moving to the next one. I have spent my life in the future. Suddenly, I can't plan. I can't say what I'll be doing next week or next month. Of course, I never really could....that was just an illusion. I have today and I am TRYING really hard to enjoy it while I can.

Mere is exhausted. I think the sheer worrying has almost put her over the edge. If I hiccup wrong, she jumps up to check on me. If I get up in the middle of the night, she is up to. If I am in the bathroom for to long (or any room for that matter), she comes to find me. She usually asked me if I have taken my D.ilantin (anti seizure medication) at least once a day. The last surgery caused some (likely temporary) damage to my laryngeal nerve, resulting in hoarseness and occasional trouble swallowing liquids. The end result, I cough a lot because liquids are always going down the "wrong" way. Every time I start coughing, she is there making sure I am ok. I think when this is over, she might sleep for a month. I maintain that I would NOT want the tables to be turned. I think it is easier to be the sick person then the spouse of a sick person. I may not be a smart woman, but I know what love is and ours is getting stronger and bigger by the hour.

And, there is some good news. I called CS hospital last night to start discussing payment plans. Thus far my medical bills (even with insurance) are somewhere near $100,000. I'm SO glad I have insurance (that was sarcastic if you couldn't tell). The woman on the phone was SO nice and helpful. Turns out, they have a financial assistance program that she was pretty sure I would qualify for. She said she feels like it will at the very least pay 60% of my medical bills and at the most 100% and it is good for 6 months. So, first I pray that my spine will get fixed and then I pray for the 100% assistance. Either way, I think it is AMAZING that they have such a program and it makes me want to donate money to them some day (when we actually have money again).

Ok. I'm going to try to get some sleep now. I have a perfect 7 year old sleeping next to me just waiting to be cuddled.