Reality bites. Really really hard.
(I am going to write about the trip to Las Vegas soon, but I’m not ready yet. I’m still in the processing phase and I know I won’t do justice to all that transpired if I try to crank a post out about it right now.)
Though a lot of things have improved, I’m mentally in a very uncertain place about all that has happened and all we’ve learned in the past few weeks. I seem to swing wildly from being totally okay and ready to fix and face all of this to totally overwhelmed by my life and the future. When left to my own devices, I tend to fall MUCH more towards the latter (which is my way of saying that I really REALLY need to be distracted). The spinal headache is gone, thanks to the blood patch. But my “normal” headache is present and it’s been fierce lately. Really really fierce.
I’m going to let you in on a little secret: I was hoping (even though I know I shouldn’t do that) that the blood patch was going to fix everything. That maybe we were wrong. Maybe I had a CSF leak low down in my lumbar spine and not in my brain and that this would seal it up and my life would be like everyone else’s. If even for a little while. And it did not. It is not. I worked really hard to put on a happy face this weekend and overall, I think I succeeded, but it was a real challenge.
To put it plainly, I am scared. I am terrified.
Just before I left for Las Vegas I got a phone call from my neurologist. She was just checking in with me, which was really thoughtful and surprising. She reiterated that we’re going to get to the bottom of all of this and she let on that the “low” protein in my CSF was more significant than I understood.
Evidently it was REALLY low and the lab had even flagged the report so she would be able to take a closer look at it. (I didn’t get the official number and I’m kicking myself for this). The uber-low protein is not a good thing. The uber-low protein means that my body is REALLY working to keep up with my CSF production, which means that the leak may be bigger or more significant than we realized. I guess I thought that maybe my neurologist had exaggerated and my protein count was just a little low. And that things weren’t really that bad. And once more, I was wrong.
I know I asked for answers. I guess I just wasn’t ready for them.
The neurologist also let me know that we’re going to give me a short break before the next test. She’s going out of town and doesn’t want to do anything until we’re sure that the spinal headache won’t come back, so I’m going to call at the beginning of November and probably schedule the next test for the first week or two of the month.
I really don’t want to have another lumbar puncture. I certainly don’t want another lumbar puncture where they’re going to shoot radioactive isotopes into my spinal fluid. I cannot imagine that it’s going to be pleasant. In fact, I can think of NO part of that that will be pleasant at all. It sounds terrible.
Even more so, I don’t want to have more brain surgery. And I’m afraid I’m going to be right back where I was 2 years ago trying to decide if having a serious and scary surgery is really worth it. If being incapacitated for a few weeks is worse than being incapacitated on a slightly smaller scale for forever. Of having to choose between another surgery and these headaches.
I needed and am so thankful for having had a vacation from my living room couch. But now? I need a vacation from reality.
I need a vacation from fear and I need a vacation from pain.
I need a vacation from my life. From my reality.
11 Responses to “Reality bites. Really really hard.”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
Katie, I don’t know what else to say except that I’m so sorry you’re having to deal with all this.
Hang in there, okay? I’ll be thinking about you.
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oh Katie, I wish I could give you a little vacation from all of this. Even if you think you aren’t handling it well, you are. From what I’ve seen anyway. I’m here anytime you want to unload or “get away”.
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I would do anything to make this better.
If you think of something, call me.
Distraction is something I am quite good at.
You have my number.
T
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You just gave me a healthy dose of perspective.
I am so sorry you are facing this misery. Ugh.
I wish I could do more for you but I’ll be thinking of you.
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Oh honey. I have had some bullshit to deal with health-wise the last few years and I am so, so sorry you’re dealing with this; I hope you get some answers and solutions that help long term soon.
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Great post.I hope you find the answers you need.
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I’m not sure how to respond to your post because I feel your fear and respect it. I always feel as if it appears that I argue with you when you write, when, in fact, all I try to do is remind you of who you are in a larger picture than how you see yourself. So, here I go again.
There is a huge variance between what we want and what we need. I know you don’t want this. But you do need it. And I know enough about your medical journey and your history of how you got through it to know that you will do what you need whether you want to or not. You are that strong. You are that wise. And you want that life filled with all those plans for the future…so in that case, your want and your need connect.
If you’re like me, you went though the surgery the first time and thought, “There, it’s done and I will be fine for the rest of my life. I won’t have to go through that again.” I’ve said that so many times. But, hah, God had different plans for me. And I have come to know that whether or not I agree with His plan at the time, once I get through it, I find I am more aware, more appreciative, and more at peace.
You will get through this. With lots of prayers from all who love you. With lots of faith in yourself and your God. With your husband and your family and friends. And with the “stuff” that God gave you when He created you.
You’ve got lots of “stuff,” Katie. We all know it and see it. And so will you.
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I wish I could make it all better.
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You are an inspiration to so many. What you are going through makes what I have had to endure seem so much easier.
I wish I knew you in person. I do enjoy your posts and tweets.
Thank you for taking time to let all of us share your story/life.
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I’m so sorry you’re having to deal with these headaches – both real and metaphorical. Such a nightmare! Thinking of you as always.
A little birdie (named Heather) told me you might make it out to the game on Saturday. If you’re feeling up to it and make it out, I’d love to meet you. We, unfortunately, have a lot in common.
Take care.
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ugg… i was just dx with IIH, which is too much spinal fluid. No known cause, I was wondering if they have any idea what could be causing this lack of spinal fluid except a leak? I can just imagine the pain you are going thru. I have pain, and my head feels like it’s going to explode at times. I’ve been out of work a month. I couldn’t imagine having to study for grad school with such a condition. I just lie on my couch b/c when I get up my head pounds and I lose my vision. It does suck and I don’t blame you. I dread another LP, it’s the worst.. I couldn’t imagine having to go thru surgery.. I hope they can find and fix what’s wrong with you.. stay strong.. I totally sympathize with you.
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