Well, that was “fun.”
A week in the hospital for long term video monitoring showed nothing on EEG, just like the first time I was in the hospital for seizures – the only difference being that this time there were no post-ictal spects done. Apparently, it is not the University of Chicago Medical Center’s standard operating procedure to do post-ictal spects. They either don’t have the equipment or don’t believe in them. I’m not sure which. Either way: not good.
Were it not for having a prior diagnosis by another couple of doctors at a better facility (Huntington Memorial Hospital in Pasadena, CA), my epileptologist would think that I do not have a seizure disorder, but instead have nothing but pseudoseizures (and she would have been wrong and made an erroneous diagnosis).
I feel sorry for the patients who roll through that hospital being told there’s nothing wrong with them when there is something wrong with them, only they’re being denied full diagnostic care. I had to get forceful about the fact that my diagnosis was real because my doctor hadn’t even gotten the notes from my previous doctor. Sloppy care.
I do not recommend UCMC for folks who are dealing with seizure issues. Not one iota. In fact, I am shopping for a new seizure doctor, as my confidence in my current epileptologist went from 100% to 0% upon finding out that after 2 years with her, she hadn’t bothered to get notes from my diagnosing doctor and had manipulated me into getting the video EEG just so she could see what she was working with for her own comfort in tapering me down off Topamax for pregnancy.
This past week was deeply frustrating and painful. I am covered in black and blue spots from where they put in IVs (or were unsuccessful in their attempt to put in IVs because I have tiny veins), gave me shots for blood thinners, and had electrodes glued to my head.
I am thoroughly miserable right now.
Everything I’m going through in order to have a child is making my life almost intolerably miserable.
I am completely off of anti-depressants now. I am having crying jags, for no reason at all, daily – sometimes more than once a day.
I am painfully aware of the fact that I have almost no friends of my own (meaning not Adam’s friends first) in the Chicagoland area, and my mother-in-law accidentally really knocked the ball right out of the park when she innocently asked the question, “Did anybody miss you while you were in the hospital?” I felt all the air leave my lungs and the negative thought pattern that used to rule my suicidal thinking come back with force. The thought “Nobody will miss you.” was loud and clear… because the honest answer was, “No. Nobody missed me while I was in the hospital.”
I have no real friends here. And the really shoddy thing of all of it is that I can sit here, shouting that fact to the universe here on my blog and it won’t make a difference anyway. Maybe 5 people will read it and mockingly laugh about it. I mean, you don’t get friends through pity. You make friends through shared experiences. And no one shares the experience of feeling sorry for myself but me.
So what am I doing about it?
The only way to change things is to do life differently.
First, I’m gonna have to get over my fear of having seizures on the bus, and just deal with it if it happens. I can’t rely on Adam to take me places when he’s got to work all day. I used to use public transportation all the time when I lived in Boston. It shouldn’t be that different here in Chicago.
Secondly, I’m going to have to find things to do outside of the apartment so that I am not alone. I’m looking towards Meetup.com for inspiration. I’m also thinking that there should be yoga classes at the Y that I can take advantage of. Maybe I can make some friends there.
Lastly, I’m not just expecting things to change on their own, or for things to be made better with a pill. I have to go out there and find some happiness, regardless of the weather.
Oh, and the Paleo Diet — The Hospital Cured Me of That.
They didn’t allow me to stick to the Paleo Diet while I was in the hospital. So I’m done beating my brains out trying to eat “clean.” I’m going to exercise daily. I’m going to keep my portions small, and I’m going to be able to eat like a normal human being, at any restaurant I want.
I refuse to stay miserable. I will claw my way back to happiness, changing 1 thing per day until I feel better.