The end of the line
Today was a good day.
Or rather, it was a good day until I realized that I hadn’t checked my home phone voicemail since Sunday and that there was a chance that my neurologist had called.
She had.
Her message said exactly what I feared it would. Everything is normal. No leak. Nothing.
It shouldn’t surprise me, I knew the cisternogram wouldn’t show anything. I had a feeling going into the test that it wouldn’t. I knew half way through and I know that a big part of me knew before the message started playing what the results were.
And yet, it hit me like a ton of bricks.
I couldn’t breathe. I couldn’t think. I had to pull my car over because I couldn’t drive. I had prepared myself for more brain surgery or more tests. But there will be neither. I had prepared for a big scary next step. There isn’t one. I did not prepare myself for that.
Nothing is wrong.
Except that everything is wrong.
My life is wrong. Being in pain for more than 4 months is wrong. Being more afraid of living the rest of my life than afraid of not living it is wrong. Everything is wrong.
This is my life now. This wrongness is the way things are. The way things will be.
And I don’t know how to process that. I don’t know how to move forward knowing that there’s nothing else. There’s no hope. There’s no answer. There’s no solution. There’s nothing but pain and frustration and lack of sleep. There’s just this life I’ve been living for 4 months. This life I hate.
I’m not okay. Not in any way.
And though it’s for you to tell me that I will be, as I write this right now, I’m not sure if that’s true. I don’t know how things can ever be okay. I don’t know how I can pretend to bravely face the future when it is so dark. When it is filled with such despair.
And so I’m going to take a few days away from writing. I need to mourn. I need to cry and yell and be upset. I need to be unapologetically self-centered.
I’ve not had many days that feel as dark as today. I don’t know what tomorrow will bring or how I can even hope to face it.
I think we’ve reached the end of the line.
And I’m terrified.
17 Responses to “The end of the line”
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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.
Hugs Katie! Take as much time as you need. When you need us, we will all be waiting.
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You do need to mourn. You’re absolutely right about that. But when you’re ready, I highly encourage you to find a behavioral pain management program like the one I’ve been doing. I can finally see a glimmer of hope that I can live and not be miserable despite being in pain 24/7. I don’t know how to put into words what this program has done for me and my perspective. I really do believe I can do this now. Not every minute or even ever day, but more often than not. It has been incredibly powerful.
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I’m so sorry that there is no answer for your pain.
There has got to be SOMETHING that someone can do to help you. I think the mourning will be good…see you when you get back. xoxo
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I believe there is something or someone out there that will help. There has to be. You take all the time you need for you. We’ll be here when you’re ready.
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I am infuriated. CLEARLY SOMETHING IS WRONG! If I have to bang on doctors’ doors myself until we find someone who can figure out what the problem is. I mean, it’s NOT NORMAL to be in pain like this! There HAS TO BE a solution. It’s the end of the line – with this doctor. But there are others. We just have to find them.
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I am so sorry. I don’t have words to say other then we are all here supporting you. I’m praying for you and praying that your able to find the healing you need. Take all the time you need! Hugs!!
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In addition to your friends, family, loved ones and strangers who are on your side don’t forget that your doctor is too.
“…said she wants to scan me “until we find something” because she believes that there has got to be something there.”
Be as self centered as you need to be. I hope it includes a follow up appointment with her to discuss, in person, in detail a game plan.
I am so sorry that you have to endure this.
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I’m sorry.
I won’t tell you things will be ok. I don’t know if they will.
I’ll just say I’m sorry, and I hope things improve, and I hope your life becomes one you love and want to live.
I hope.
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I am so sorry for what you are going through pain is not fun 4 years ago i became very ill having severe head pain .I went to the doctor several times real sick. week after week lucky my doctor kept doing test. I was diagnosed with lyme disease. and i do not camp never seen rash. I HOPE THEY WILL FIND OUT WHAT IS Wrong pain is a indication of something .Good luck.
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I’m with Heather. I’m so angry on your behalf. This is not normal. This is not the way it should be. There has to be another road if this one has led to a dead end.
We’re praying for you, sweetie. Take time; grieve; breathe. We’ll be here when you’re ready.
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Some day. Some day, you won’t hurt. I believe that. I just want you to feel it not hurting. I want you to exhale the breath you’ve been holding against the pain, and feel it’s absence. I’m not a neurologist, nor an amateur faith healer. But I am an optimist. Some day. Soon. steve
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you poor thing. i wish i could make some of this go away. since they cant find out what is wrong, i hope the doctors can at least alleviate some of your pain.
hugs
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I still hope for you.
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I’m so sorry for this chronic pain that you’ve been experiencing. I’m so sorry that you aren’t getting answers. There has to be an answer.
Are you able to seek second opinions with your insurance?
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Ugh. I am so sorry. There has to be an answer, and your doctors should be committed to finding it for you. This is not acceptable.
Hugs.
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I am so sorry for your suffering and despair.
Like the above poster, I really think you could benefit from a GOOD chronic pain management program WHILE continuing to search for answers and solutions.
Like you said yourself, cisternograms have a HIGH FALSE NEGATIVE rate.
This is NOT the end of the road.
Keep pushing until you have an explanation for the low CSF pressure and protein.
You DO have something wrong.
You DO have a doctor behind you, wanting to search with you….but she is human and it may take time.
You DO have MANY people behind you, supporting you, loving you.
You HAVE enriched many lives by sharing yours.
HANG in THERE.
Through the haze of pain and sorrow, FEEL the hands holding you up.
Sending you Courage and Strength from a long-time lurker, never commenter, doctor, sister of a chronic pain-sufferer whose heart breaks for you.
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Couldn’t have said it better myself KT. You hang in there dudette. There will be an answer.
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