I waited in the office waiting room for a solid 45 minutes by myself. It was sort of my fault because I got there 30 minutes early, foolishly thinking they’d take my back early too. I sometimes forget that doctor’s offices don’t work like the rest of the world.

I was more than thrilled when someone finally came into the waiting room with me, and even more so when I discovered that she was hilarious. A few minutes after she arrived nurse came over to get her paperwork and asked her to verify her date of birth. After she responded that it was 12/30/20, she looked the nurse straight in the eye and said, “would you like to know the date of my last period too?” The shock that registered on the nurse’s face was priceless.

Her jokes with the office staff gave me a few moments of much needed laughter, a few minutes where I wasn’t drowning in my own thoughts and worries.

When I was finally called back, the nurse asked me a few questions. She seemed sad for me, but I’m getting used to that. Uttering the phrase “8.5 month old headache” has that effect on people. It’s not that I don’t appreciate the sympathy, it’s that lately it’s gotten tougher and tougher for me to cope with the pain, both because I’m so tired and because things are getting worse instead of better. And frankly, sympathy makes it worse.

After the nurse left I waited a little while longer for the neurosurgeon to come in.

He asked a few questions about what happened after the last blood patch, and then it was my turn to ask him questions. I tried to be adult about it, but my question was the most childish one I’ve ever asked. Before I had time to stop myself, I blurted out my question. “Why me?”

I asked why I get massive spinal fluid leaks from lumbar punctures when they’re relatively rare, when other people really don’t. I asked why my body isn’t fixing itself like so many other peoples’ do with spinal fluid leaks. I asked why we can’t seem to find an answer to this when this is his specialty.

I didn’t expect him to have an answer, and he didn’t. He said I may just have poor quality in the covering of the spinal cord/canal, he said it may just be completely random. It might all be chance.

And so we got onto the next order of business- what the hell we can do now. He gave me 3 choices for now: a blood patch, a myelogram likely followed with a blood patch, or a 2 day infusion following by a myelogram followed by a blood patch.

I asked him what he thought, knowing that all I really had time and money for right now is the first choice, and thankfully he agreed. But he threw in a disclaimer. He said that if this blood patch doesn’t work, it may be time to consider that we have it all wrong. He had previously suggested that perhaps I just wasn’t producing enough fluid, but later rescinded that diagnosis, even after the negative myelogram.

And now we’re back there.

He said that there are just a number of things that are pointing to the possibility that this is all because my body isn’t producing CSF the way it’s supposed to, the way it used to. And do you know what the treatment is for that? Well, neither did he. Because basically it never happens, so there isn’t treatment protocol to follow. He told me he would do some research and suggested that I do the same, but I’ve come up with nothing so far.

I’m trying to keep my chin up and hope that this blood patch works and all this worry, all this stress and sadness is for nothing, but I’m having trouble. The signs all point to this not being a leak. The signs point to this being my body being what’s wrong. And more than that, they point to a solutionless problem. They point to pain that cannot be fixed, symptoms that cannot be cured.

I’ve been sitting on this for 5 days and I still can’t really wade my way through it. I went from being secretly hopeful that he really did have a solution like the nurse made it sound like, to being completely demolished by the idea that there isn’t a treatment at all. I went from my perfect dream scenario to one of my very worst nightmares, all within a few moments.

And so that’s what happened. That’s the whole story, unedited. But what’s left unwritten is all that’s going on in my head. The disappointment, the frustration, the pain, the sadness. The emotions I can’t give words to. They come in waves, ones that crash the hardest in the quiet moments, in the really painful times. But even when things are busy and I’m at my happiest, it’s all still there in the background, the tide quietly falling, waiting to rise again.

I’m tired of treading water, tired of swimming through this. I’m tired of being brave and strong, when all I really want to be is me again.

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