Duck – Here Comes Another Turkey!

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.

 

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2 thoughts on “Duck – Here Comes Another Turkey!

  1. I have felt a little like you have. The pit names on some of my illnesses. But then my vestibular doctor at Duke saud, “you have something more, I don’t know what. I can’t do anything else.”
    My neurologist that is a migraine specialist has theories, then she said, “so you didn’t test positive for the diseases they tested you for, that just means we don’t have a test for it.”
    I am going to John Hopkins Vestibular Clinic On the 8th, maybe they will have some theory.
    If not, I may have to live like this. Having vertigo nearly every day. The same with the debilitating migtaines.
    That’s all I want their help with, the rest I can deal.
    But who knows what will pop up.

    I hope you can find doctors and researchers who might be interested.
    If your biggest problem is with your CSF, I might have a doctor who works at Duke who might be interested. I mentioned her on your About page. I don’t know much about your condition, so I’m not trying to give advice I promise. I wouldn’t anyway.
    Namaste….w

    Liked by 1 person

    • Cheers, thank you! We know it’s not an inner ear issue, and the closest guess we have is that CSF is pooling around the stem and at the nerves that lead to my face, but we can’t capture it on imaging because as soon as I lay down, the CSF moves away and stops pooling.
      I think those are the scariest words: You might have to live like this.

      Like

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