neurosurgery

Duck – Here Comes Another Turkey!

Posted on by akiwifreund

The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.

I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.

Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.

On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?

Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.

Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.

Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.

 

How Now, Brown Cow?

Posted on by akiwifreund

I saw my 42nd doctor today. I always start my introduction off the same way for everyone: “So, are you up for a challenge?” I get the same reaction every time, like there is no way I have something they haven’t seen yet. I feel their need to pat me on the head and tell me I’m being cute, and they’re waiting to smirk and say, “Oh, it’s just a migraine, sweetie.” But then they start to sputter, or stutter, or ask me the same question six or seven times. Then they leave the room. Then they come back in (as if they haven’t just gone into their office and said “Fuck” a few times, noiselessly, before putting on their game face and walking purposefully back into the exam room). This doctor was no different.

He said, “I just don’t know what you have. I have never seen this before, but you know, I’m just a neurologist. I wouldn’t know what to do with you.” I said, “Study me.” He said, “I wouldn’t know what to study.” I said, “But these are neurological issues. Someone has to be willing to think outside of the box, like keeping me upright for scans instead of laying down.” He said, “But I don’t know how to help you. I think you should go back to the neurosurgeons.” I said, “Okay, can you talk the neurosurgeons at the U of M into taking my case?” (He is, after all, a University of Minnesota neurologist.)

He said, “I’ll just send them a referral like normal.” But this isn’t normal. None of this is normal. I wish that I could make my surprised face now (even if it’s an act), but, you know, my face is half paralyzed. I really had to fight the urge to have my medical transport person make a pit stop at a bakery so I can buy a chocolate cake to put my whole face into in the privacy of my apartment. I’m past crying about it. It’s just exhausting. How am I supposed to carry on without even a small glimmer of hope? The doctors tell me not to give up. That means “fight,” right? But they don’t want me to fight with them, just the ever-elusive “someone else.” I often wonder what they would do if they were me.

Today wasn’t a total loss, though. My sister and I went to see a dermatologist at the same time early in the morning and then made a pit stop at her place to pick up her two dogs before she went to work, and as usual, the smaller female managed to get loose and run free. She’s some sort of terrier mix with short, wiry hair and sweet brown eyes that my sister and her husband got the day I moved to Minnesota. The male is some crazy mix of beagle and who knows what else- maybe Saint Bernard? – he’s got kind of a big body but pretty short, stubby legs, and the saddest face ever. The male also does not move fast for anything. When he sees me, he knows I’m going to rub his belly, so he doesn’t even bother coming over to me first. He just throws himself on the floor and raises his front paws, like it would be way too much effort to walk a few steps, and I definitely should not miss out on scratching his armpits. So while my sister was trying to lure the female back with treats and we saw her bounding through some brush like a jackrabbit, the male saw me from about 50 feet away and launched himself towards me near the parking area. I swear to you I have never seen him move like that with his ears flapping in the wind before, and I probably never will again. The female heard me calling for her and she buzzed right past my sister and threw herself down for a belly rub too. I really wish I could have pets. I’m lucky my sister works across the street and I can go get some fur therapy when I have a crappy day. They were both rescue dogs, so it warms my heart that they love me enough to come to me too.

Today my sister drove my car so that I could clean it out a bit before listing it for sale. Let’s be clear, here: I don’t want to. I love my car. I did a lot of research before I bought it, and it has all of the features I wanted and nothing I didn’t. I had planned on keeping it for at least a dozen years and so made sure it had the best possible engine for its price point. I got a platinum extended warranty. It fits in every parking space. It’s a hatchback, so even though it’s in the car category, it sits up higher like a small pickup – that means it’s super easy to get in and out of. I could go on and on. Cross your fingers for me for a quick and successful sale, because girlfriend’s gotta live off that money for the next twelve months, know what I’m sayin’?.

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