Friday, April 19, 2013

Disappointment-Or Something Like It

If you saw my Fear post last month you know that I had some unusual news about my brain. I left you with the knowledge that I was scheduled for tests to determine what is going on with me and some of my misgivings.

Since that post I have had my lumbar puncture (Not something I will be willingly signing up for again), I have been in the hospital a few times, and I have reached what I think was the level of despair which I hope I never reach again. I have had several very painful, physically and emotionally, weeks.

My lumbar puncture was able to confirm that I have "almost three times the amount of CSF(cerebral Spinal Fluid) than normal people". This confirmed the diagnosis of Pseudo Tumor Cerebri. In essence Pseudo Tumor is caused by some trauma to the brain or neck, it takes between five and eight years to first appear as an inflamed optic nerve. There is a nerve that runs down your brain that absorbs the CSF which your body produces daily, lubricates your brain with it, and then you pee it out, normally. My brain however thinks that there is a tumor on this nerve and will not let it absorb any of the CSF that my body is producing. The build up of the Cerebral Spinal fluid puts pressure on my brain, causes the optic nerves to become swollen and also causes debilitating headaches.

I am now on some medication that stops the production of pretty much all fluid by my body. I am always thirsty because I always have dry mouth, but I don't have a bad headache. I do however have constant tingling in my hands, feet, and face from the medication, a loss of appetite  constant heartburn (even though I feel sick when I eat), fatigue, and everything tastes off. So, I suppose that is better than getting a headache once in a while, right?

Oh, and then there are the other side effects that the doctor didn't really discuss with me. You see one of the effects of this medication is that alcohol can cause "extreme" headaches. I suppose that isn't a bad thing to avoid generally, of course I do happen to rather enjoy my beer blog, and writing about beer is difficult if I can't drink it. I haven't tested this out yet. I am afraid to. I want to see if my body will lash out at me for trying to hold on to one of the things that I enjoy so much in my life, but I am afraid to find out. If I can't drink beer anymore that might be almost as devastating as the other thing that this medication is stopping me from.

You see, for a year now we have been trying to have a second child. We have not been successful with the assistance of my doctor, and we were ready to move on to the next step and see a fertility specialist. This of course has its own cloud of disappointment and guilt associated with it. With my new medication (which I will be on for the rest of my life unless my condition miraculously goes away) it isn't safe to be pregnant. I haven't told many people about our struggles to get pregnant a second time, and I feel awkward talking about it now. This medication has sort of sealed my fate as a mother. I know that I should be grateful that I have one healthy and wonderful daughter, and believe me I am. I always wanted to have a large family, but now that is not even a little bit of an option.

So if you see me randomly crying or looking sad these days it could be for any of those reasons. I am disappointed, I am angry, I want to scream and shout, I want to cry, I want to tear my hair out to make this go away, but the part that I am having the most trouble with is the fact that there is nothing I can do. My doctor swears that he doesn't know why this goes away in some patients and not in others, he said all we can do is monitor it and adjust my medication  dosage as needed.

Now I feel completely exposed and vulnerable. I am trying very hard to find the things that I once enjoyed so much and savor them. I am trying to throw myself completely into every second I have with my daughter and husband, but at the same time I have a dark cloud in the back of my mind telling me that my life wil never be what I wanted.


  1. You are so incredibly strong and I am very sorry that you have to deal with all of that at once. Also, thank you for being brave and sharing this - I know that was difficult to do. My thoughts are wish you and I want to give you a big old hug from a fellow beer loving gal. Please let me know if I can do anything to help. Just keep being your awesome self and hopefully things will improve.

    The Beer Babe

    1. Thank you so much for your encouragement. I am trying to stay positive, but a hug is always most welcome when I am struggling with that, like I am today. Thanks!


  2. girl-i'm going to think of something more inspiring to say. in the meantime, know that i think you rock, and i'm sending you a hug!

    1. Thank you sweetie. I really appreciate your saying so, and sending the hug.


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