Thursday, October 27, 2011


Apparently I forgot to mention I'm allowed to eat egg yolk, now and my friend nearly had a coronary when I ate one in front of her.

I was told I'm supposed to inform people of things like this and that I'm falling down on the job.

I was also asked to do more recipes, because I haven't done any in a very long time.

So, here I am giving you a recipe:

-Cover the bottom of a frying pan with olive oil and heat on a stovetop
-When the oil begins to bubble, crack an egg into the pan
-When the white of the egg is no longer runny, spatula it onto a plate
-Drive to my house and ring my doorbell
-Present said egg to me
-Watch me eat it

Friday, October 21, 2011

It's a date!

I got to drink this tonight!

A "smoothie" of rice milk, almond butter, vanilla bean, and dates :)

Back in July, the results of some tests led to me being ALLOWED to eat certain amounts of butter and dates. My excitement rivals a little girl's 1st trip to Disney, Y'all!

In August, I tried butter, resulting in less than desirable results. Barf

I've had some amount of butter since that day, but had yet to try dates until tonight.

Shockingly, they've remained in my person and have yet to make a reappearance...

*Side note: I now have 2 years sober. Everything I said last year still rings true*

Saturday, October 15, 2011

Testing 1, 2, 3...

The nitty gritty for those that have been asking:

On September 30th I started a six month clinical trial. It will go until March 16th, just a few days before my birthday (Happy Birthday to ME!). The trial will see me up until the 2nd anniversary of having Aspergillosis.

The trial is affiliated with The Center for Infectious Disease and Centers for Disease Control and Prevention, and is being conducted by doctors from Stanford and UCLA.

To answer some questions I've gotten, there is no control or placebo group in this trial. This new drug and treatment is being measured against the results of other current drugs and treatment methods (a lot of my old results come into play). With this disease, a placebo is not an option, as no treatment equals death. Yup

In that same regard, there was a preliminary group of healthy test subjects, to make sure nothing catastrophic happened, but healthy patients can't really test the drug because it only targets Aspergellius, specifically. I also haven't been told what, if any, side effects there had, as they don't want to imprint anything in my mind.

I'm 16 days into the clinical trial and here's how things are going...

-I've been falling asleep easily at night, which wasn't the case when I was on the steroids.
-I stay asleep all night and wake feeling refreshed!
-My kidneys are holding their own. (Struggling, but hanging in, nonetheless)
-I haven't had to have my blood filtered in a month
-I haven't had any horrific side effects (compared to the things I went through starting all my other drugs, this is HUGE)

-The skin in all my bends, folds and orifices itches like nothing I have ever experienced before (and I have eczema and have battled poison oak, so I know itchy). I've been told it's likely a Herxheimer Response which is actually a really good thing.
-I want to fall asleep at approximately 7pm now.
-I'm losing weight, again. Pretty much all the weight I put on with the steroids is falling right back off.
-I feel wonky every few days. I don't even know what that means, or how to explain, just something feels off. It's not good, or bad, just odd...

If I didn't answer something you'd like to know, feel free to ask.

I'm actually starting to feel a tinge of hope that this thing might work :)

Wednesday, October 12, 2011


Today I saw my oral surgeon for the last time! My jawbone is healing nicely and even though I have a sore in my mouth as a side effect of my new medicine, he says it doesn't look troublesome and can monitored by my infectious disease specialist unless it gets worse. Woot!

So I had my permanent bridge placed and got my new mouthguard today.

I just have to see my regular dentist in a month for a check-up.

What a relief. It's been quite the saga!