Monday, December 14, 2009

Losing my voice, adding a doctor

About three weeks ago or so, I began to have a very hoarse voice.

The nurse at the office of one of my doctors said it sounded sexy.

I disagree.

I sound like a frog with a very bad sore throat.

It is starting to be annoying.

When I speak to my husband, he replies "What?"

When I talk to my mom. She asks, "Huh?"

When I try to talk louder so the kids will hear me,

they think I'm yelling at them.

It's hard to help my son with his speech homework,

test both kids on their spelling words or

read them a bedtime story.


It is frustrating.


I would like to pull the covers over my head and not speak to anyone until January.

That is when I have an appointment with an ear, nose, and throat doctor. I think he has a fancier title, but I'm not sure what it is.

Another doctor joining my team - yippee I shout in a sarcastic voice.

Here is the current roster:

A rheumatologist, two (count 'em two) pulmonologists, and a gastroenterologist. I like to refer to them as the "ologists."

Over the past six years, I also have seen several primary care doctors, three other rheumatologists, an infectious disease specialist, and a cardiologist.

Why so many doctors? Because scleroderma is a complicated disease with complicated symptoms.

The rheumy takes care of my overall health, checks on skin tightening, joint and/or muscle pain, monitors Raynaud's phenomenon - a condition in which fingers (and sometimes toes) turn purple, blue, or white with exposure to cold or stress, orders tests and blood work, and coordinates with other specialists.

The pulmonologists (one local, one at a big city research hospital) treat and monitor lung complications. In my case, these include pulmonary fibrosis (scarring of the lungs), and pulmonary hypertension (high blood pressure in the lungs). These are the most serious complications of my disease. These complications will most likely shorten my life span.

The gastroenterologist treats and monitors my acid reflux and slow moving stomach.

Sometimes it's very hard to keep all these doctors on the same page. Other times, it's hard to determine which doctor to call when a new symptom pops up.

Like my "sexy" new voice.

Ribbit.

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