Tuesday, November 20, 2012

Hello Darlin', Nice To See You. It's Been A Long Tiiiime...

***I wrote this post a few months ago and forgot I hadn't actually posted it. Fog!

I took more time off from blogging than I originally anticipated because it was making me feel silly and pressured to make it funny all the time. I started blogging because I wanted to connect in one motion with other people who live with or have an interest in invisible disabilities, but I started feeling like maybe I was complaining and I try sooo hard to avoid doing that in general. Looking back, I can see it was probably more that I was feeling uncomfortable about being super freshly exposed about a topic that I had previously kept relatively close to my chest. Am I repeating myself yet?


Over the past several months, I've been seeing Dr. A, a naturopathic physician who specializes in chronic disease care. He is magnificent. He ran a bunch of tests that no one else bothered to run before and I now have a host of new leads in my search for answers to my various, mysterious ailments.

The most acute discoveries were walking pneumonia and a super high viral load of chronic active Epstein-Barr virus (a virus apparently everyone carries, just not at levels that affect them). It took a couple of months, but the pneumonia is gone and the EBV is back to a manageable level. I had a flareup a couple of months ago, but it only lasted a week because I knew what it was and how to deal with it. THANK GOD.

Also, it turns out that my thyroid medication wasn't actually working. For five years. But whatever. I feel much better now that thyroid times are actually on track.

And there's a first! There is an actual theory about the big mysterious fainting issue. It might be a combination of EBV, my chronically low blood pleasure, and the fact that my adrenal glands aren't producing enough cortisol. Sweet.

One thing that shook me a bit was discovering that I have an MTHFR gene defect. Previously unbeknownst to anyone, this is likely the defect that connected with the one on Maya's dad's side and caused her congenital heart problems. I'll never really know and I don't plan to ponder it too intensely, but I recently learned that my grandfather survived the bomb at Nagasaki and I can't help but wonder if this is one of the ways his genes were twisted.

Anyway, I feel like I'm actually doing something by working on these things and I'm in decent overall health (for me) at the moment. My struggle with paying attention, retaining what I read, and using my hands are up next. Hopefully.


  1. <3 - happy to see you are getting some useful information to work with.

    as for the difficulties paying attention and retaining information are things I've got first hand experience with. Have you looked into some of the approaches used for ADD folks? If you have any interest, I could share what has worked for me. May not "fix" anything, but might help. Some of them got my sorry, distractable, sieve of a brain through college, even. ;)


    1. Yes, please share! I want to try anything that has been helpful to someone else. XOXOX

  2. So, I failed at school most of my life and couldn't figure out why. My reading retention was crap, my attention span was crap, but I have always been seen as "smart". At 30-something I was *finally* diagnosed with ADD, and it was like magic. Drugs helped, but even without those, I finally had a starting point to deal with stuff. So I enrolled in an expensive private University. heh.

    Anyway - I got through that program because of a few key techniques. The most effective thing I could do was have a conversation about information I was trying to retain, either as I was reading or immediately after, with the book in hand so I could reference it. Needless to say, you burn your friends out pretty thoroughly with this, so I saved it for particularly important things, and Raven is an angle and has the gift of gab. :)

    The other, much more useful thing I did was to use multiple types of learning at once. I would walk around my apartment, reading out loud, or manipulate something else with my hands while I read out loud. Incorporating visual, kinetic and auditory seemed to help stimulate my silly brain enough that it retained more information than reading alone. I do this when I'm reading novels, too, on days that I'm really struggling to focus.

    When it came to getting distracted from tasks, I had a couple of techniques that worked. My to-do lists were pretty astonishing during school. One approach that worked was to write the top 3 or 4 things I need to get done in very large print and to hang it somewhere I could see from anywhere in the apartment. I would set a timer to go off every 15 minutes. When the alarm went off I had to look at my to-do list. I could do any one of those items. I'd trail off and get distracted by something stupid (social media, anyone?), but I could keep bringing myself back to something productive. Eventually I'd find myself staying on track with at least one of the tasks enough to finish it.

    I also did well if I made sure there were different types of tasks on any given to-do list - something physical, something that involved another human, something I could read out loud, something I could write. If possible, I'd try to do these things in different parts of the apartment, or at least different chairs.

    I don't know if what you are dealing with is ADD - I think it is? But for me, the short version of everything I just said is that my brain needs more than one form of stimulation, but I need to make sure the material I'm trying to take in is the dominant form of stimulation. This also meant that the TV is *always* on if I need to study/read/write, but it is always on something I know so well I don't need to watch it. (I've watched the first five seasons of West Wing at least 6 times thanks to my degree program). I also need the TV on without volume if I have insomnia.

    I don't assume for a minute that these techniques will work for anyone else, but I hope that it maybe gives some ideas about the types of things to tinker with in your environment.

    Hope you find something that works for you! Lots of love, pretty lady!

    1. Oh - an important part of to-do list approaches that I left out - key was to allow myself to move between things as quickly as my brain would, just to do so within the realm of acceptable tasks.