Worcestershire Sauce.

Over the years of being bed bound I have racked up hours and hours of Food Network watching so any time I'm up to making the long trek downstairs I can't help but cook something! I've come to love cooking and experimenting with recipes until they kind of become my own.

One such recipe is my teriyaki sauce. People often ask me for the recipe and I basically list the ingredients with the quantity simply listed as "to taste"... i.e. Soy Sauce- To Taste. I don't use pedestrian implements such as measuring devices.

One day I was whipping up my sauce, just going through the familiar motions but when I tasted my sauce to decide what it needed I was appalled! It was disgusting! I added CUPS of brown sugar and water to try to balance the incredibly inedible saltiness. I wasted all sorts of things as I tweaked my sauce but I just got further and further away from my familiar, delicious result.

Finally I noticed the bottle of soy sauce was still in the fridge... I was using Worcestershire sauce. A dash here and there is great but half a bottled mixed with various Asian ingredients and copious amounts of brown sugar... Real bad.

I bet you're wondering what in the world this little glimpse into my life has to do with anything... Bear with me.

I spent so much thought and time trying to fix the issues of the sauce that I didn't even consider the big picture. I thought it was too salty so I added sweet, I thought it was too pungent so I added flavorless water. I never once considered there was an actual problem that was causing it all.

This is what my doctors and I have been doing with my rattletrap of a body. We focus on all these weird, isolated incidents and symptoms but we have never looked at my body as a whole to see if maybe there is a a greater malfunction or problem that is causing everything!

What a bunch of dodo's.

Let's just talk about these symptoms... Going as far back as 12, I had severe chronic lower abdominal pain and urinary symptoms. Since then things have developed like constant nausea, severe fatigue, restlessness, extreme sensitivity to any pressure, blurred vision, muscle cramping, muscle weakness, falling, passing out, numbness/ tingling, of course continued pain, and on and on....

We've always had something to blame it all on... Medication side effects, recovery from surgery, complications, etc... But now here I am, off of my meds, not currently in any medical crisis and the symptoms continue. These aren't just symptoms that should be ignored or downplayed. I should not be falling or having regular uncontrollable muscle spasms.

So. By George. Maybe we should look into the WHOLE picture that is Deni's whackadoodle body.

Looking at the symptoms my doctor thinks it may be neurological so we are starting there. I am having a "nerve conduction test" done next week which sounds like a secret, truth producing torture where they put little needles into my nerves then send electric currents through them to see if and how well the jolt travels through my nerves, basically testing for nerve damage. Sounds like fun.

There is also the autoimmune path that we might explore depending on results from that torture and other neurological testing they might do. I know that IC is a relatively young disease and the consideration of it being an autoimmune disease is a pretty new theory but if that's the case it would make sense that I would have other diseases under the autoimmune umbrella.

It's hard being a frontier of this disease but I am thankful for any forward motion that is happening... I wish more doctors would stop looking at each symptoms and look at us as people, as patients, as a whole. I also wish that we didn't have to be afraid of being judged or categorized as paranoid or attention/ drug seeker every time we bring up a new symptom because maybe if a doctor would trust us and listen to us we would start these processes and find answers easier and faster!

I'll keep you updated but learn from my mistakes... Mention ALL of your symptoms to your doctors, don't just write them off because it's easier. Your body makes symptoms to alert you that something is wrong, like sending a distress flare from a life raft in the middle of the ocean... Don't ignore the caution flares because there are distracting fireworks nearby. (I really wanted to end it on that and just have people read that sentence over a few times then shake their head and blame it on my quirkiness but I have to acknowledge that was a stretch even though I'm not going to change it. I rebel in small ways to make myself feel in control of my life. I'm working on it.)