Monday, November 26, 2012

Auditory Hallucinations

Part of the "fun" of being bipolar are the auditory hallucinations. I don't have them all the time, but it can be difficult to navigate life when I do.

If you've ever truly wondered what auditory hallucinations sound like, this is a fairly accurate (in my experience) representation. Be forewarned, this is potentially unsettling to listen to and the audio kicks right in. Wear headphones for maximum effect.

Auditory Hallucinations

(Thanks for the link, Melissa S. Cohen.)

Wednesday, November 21, 2012

Suffocating In A Big Bowl Of Allergens

I was thrilled earlier this week (maybe it was last week) when the fog surrounding my chronically, cripplingly slow brain was lifted with - Benadryl!

Dr. A ran a blood panel that included a "short" allergy test. This turned up all kinds of allergies, some of which I knew about and others I didn't. I already knew about my tree/flower/dog/cat allergies, for instance, but I didn't know that, out of ALL the allergies, I am the MOST allergic (stunningly allergic) to Melora. Sad face. She's 16 and there's no way I'm getting rid of her, I will just take enough Benadryl to kill an elephant every night until she decides to go on safari and then I'll live pet-free. Right!

New thing - food allergies.

Just in time for the holidays, I am now deathly allergic to oranges and walnuts.

I am not-deathly allergic to: corn, cow's milk, egg whites, mustard, peas, peanuts, potatoes, rice, soybeans, and tomatoes.

I truly cannot wait to find out what else I'm allergic to, but that will be from another blood test that happens when the rest of my body has settled down (as much as it ever does) from fighting the boring-to-talk-about things that it's currently fighting and I don't feel like talking about.

There is literally nothing in the house I can eat right now except for celery and dry oat cereal. My "going to the grocery store the day before Thanksgiving" game face has been securely fastened. Try snagging that last box of quinoa and I will throw elbows, motherf*cker!

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.

Saturday, February 4, 2012

Putting The "Hand" In "Handicapable"

My gorgeous band has a show tonight that I expect to be a lot of fun. I love this band, I love being creative within a group. In the "completely unhelpful" department, I've been having a lot of trouble with my hands. This is keeping me from fully participating in the alchemy and has long been digesting my essence and making me grouchy. Specifically, until two years(!) ago, I used to write words and play the accordion and (occasionally) the piano in this project. I can no longer push any keys or hold a pen long enough to write many lyrics. Typing isn't that much better (this took me days to compose) and offers an uninspiring flow. I feel particularly grateful that I can still sing, since it's the last working musical talent I have.

Backing up - before the Mysterious Fainting Thing, there was the Mysterious Hand Failure Thing. The Mysterious Hand Failure Thing is on the horizon of its 3rd birthday, which is a life lived too long. I already knew I had Raynaud's disease, where the fingers and toes turn white or blue and feel cold or numb due to low temperatures or stress (or, you know, whenever). This used to be more of a nuisance than anything, but over time it has really inhibited my ability to use my fingers. Separately, one day I noticed I'd been waking up with stiff and painful hand joints.

Raynaud's On The Bus Goes Round And Round

I've since been tested multiple times for rheumatoid arthritis, lupus, carpal tunnel, and something else I can't remember. I was going to start the food allergy elimination diet a year and a half ago, but then I got a new job and knew starting both at the same time would end in failure. So, life happened, I will undertake that task in the next month or two. I'm already used to restricting my diet, what's a couple more weeks of more intense regulation? Right?

My ability to go with the flow as proactively as I can has begun to fail in this department. I'm completely over having scant use of my hands. I don't have trouble every second of the day, just most of them.

Things I Used To Do Before My Hands Mysteriously Stopped Being Reliable:

Hold and use a pen for more than a minute or two.
Type quickly and efficiently.
Play the accordion.
Play the piano.
Play the guitar/ukulele.
Play the zils or Turkish spoons or any kind of percussive instrument.
Use chopsticks.
Use a hair or makeup brush or without dropping it every other time I pick it up.
Put quarters in the laundry machines without dropping them everywhere.
Do the dishes without dropping something.
Make my iPod go without a bunch of extra effort.
Push "buttons" on my phone.
Do crafts.

Many of these points could also go on a list called "Things I Used To Do Before Myasthenia Gravis", but my MG is under control at the moment (small mercies). As I said, the points that vex me most are the ones involving writing or playing musical instruments. The fact that songwriting is nearly impossible right now is giving me a huge hangup. I'd like to be able to do that while I'm sitting at home. As for sewing and crafting, I can no longer even affix rhinestones to things, which makes this magpie weep glittery, glittery tears. Also, I'm naturally a klutz and this is further wounding my pride. Thankfully, Bill has become quite adept at being my extra limbs.