Days 378-385: I Know What I Know

 

Alton Brown's talking about yeast on Food Network. He's discussing pizza dough: how slow rise is better than fast, how yeast needs time to ferment. To help, he's adding malted barley.  Words like gluten, gliadin, and crisp leap from his lips. I am drinking a green drink trying not to puke from the nystatin I just took on an empty stomach.

The phrase medically fatigued doesn't begin to express how I'm feeling right now. My mouth is on fire. Stomach pains plague me. My stool is yellow. My upper abdomen's distended.

Over the last week, I've been told a myriad of things from numerous doctors.

"Viruses aren't a problem...."
"Candida's not real...."
"Take Priolosec..."
"Your system is over-reacting..."
"It can't be thrush..."
"It's not cancer..."
"Eat fiber..."
"The white rice in my stool (aka parasites) is probably just excess mucous..."
"You might have an ulcer..."

Yesterday, I was diagnosed with Glossodynia--otherwise known as Burning Mouth Syndrome. Research suggests it's a random thing.  Depression, Menopause, Viral Infections, Nerve Damage, poor dental health, GERD, thrush, nutritional deficiencies, allergies to household chemicals--all get the credit.

I'm tackling the GERD/allergy/nutritional/thrush angle.

• Sodium Lauryl Sulfate-free toothpaste
• Alpha-Lipoic Acid
• Upping the greens
• Continued gluten-free, sugar-free diet
• B-12

Testing with specialists is torture.

Me: I don't have an appetite.
Them: You're fat.
Me: I should be a bird for how little I eat.
Them (with a look of condemnation): Ka-theeee, it's simple mathematics...calories in/calories out.

My colonoscopy reveals melanosis (discoloration of the colon) making the conversations even more comical.

Them: Do you take laxatives?
Me:  No.
Them (in a condescending tone): Ka-theeeeee, melanosis is only found in people who abuse laxatives.
Me (at least in my head): Well, I don't know what to tell you, doc.  I'm not a liar and I'm hardly bulimic. Perhaps it's time to start upping the medical research.

The arrogance of the medical community is astounding.  I've never considered being a doctor. Now, I can't stop thinking about it.

On the bright side, my neck and shoulder pain's subsiding. I'm sleeping better. I feel less sickly. I'm getting better at comforting myself.

"They don't know the whole story..."
"They're trying to help..."
"They only speak of what they know..."
"You're not crazy..."

I try to remember.

Mostly, I'm learning...who I am, who I want to be, who I don't want to be, how to listen, how to treat people, how to trust myself.  Over and over and over and over again, I'm learning.

Comments

[Marcella Cardinal]

I'm glad you know not to listen to Doctors. I feel like you're a leader for people that are told "it's nothing" and that what they have doesn't exist. More people should do their due diligence and listen to their bodies. For whatever it's worth (and I can't imagine it's much given what you're going through)- I'm proud of you.

[Michelle Holderman]

I read this shaking my head the whole time. Yes, much of the medical community is extremely arrogant. If it wasn't in there books in medical school; it doesn't exist. If the pharmaceutical companies don't make a drug for it; it doesn't exist. Oh gesh, don't get me started.

I'm sorry you've had to go through that, Kathy. I'm sorry we all have. I'm sorry the politics are the way they are in medicine. They are so dismissive of what they do not know. Let me remind you, and I say this in all sincerity, YOU ARE NOT CRAZY! They're refusal to step out of their safe, comfortable, know-it-all boxes is what's utterly crazy.

You, my friend, are beautiful, brave, intelligent, compassionate, capable, articulate and smarter than most doctors. Whatever this year brings, whatever choices you make, know you make a difference in the biggest way. How? By the way you love people.

[Saima]

What Michelle said :)
Been a while since I've checked in on you.
Thank you for still writing.
Don't know what I'd do if I came to this page and there wasn't any of you on it.
My friend Lilya (you remember Lilya) has been doing treatments on me...
Pranic healing. Ever looked it up?
Seems vague and beyond woo...
But I haven't had a seizure in weeks and she's the only thing that's different.
Anyway, I love you and I'll keep you posted.
Perhaps energy work is where it's at for all of the weird stuff nothing else is curing.
Discoloration of the colon can also happen as a result of just about any change in bowel movements. Reasons for it are vague but at least there's a range. It certainly isn't enough to accusing you of laxative abuse.
Stupid doctors man.