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Monday, May 16, 2011

Could It Be, REally?

Could it be, really? Knock on wood. Rub a rabbit
tail. Cross your fingers. Cross your toes. Wish on a shooting
star. Say a prayer. Whatever you believe in, do it now for me,
because I might actually have a diagnosis!

I've had a new symptom lately - mouth sores. I've always had
more than my fair share of cold sores. But now I have all these
little bumps and sores all over my mouth and throat. It feels
like my poor tongue has been on fire for a month. I was certain
it was a side effect to a new medication. The medicine is
supposed to dissolve under my tongue. It never does.

The doctor last week wasn't so sure. Now this is kind of funny.
This is the pain doc who won't talk to me directly. I had a ton
of trouble communicating with this doctor and a difficult

The interpreter kept signing "VD." Naturally, I thought he meant
"Venereal Disease." I was freaked out about how I could get an
STD with no sex.

It turns out the doctor was actually talking about vitamin D.
Mouth sores are a symptoms of vitamin D deficiency. So are
muscle pain and bone loss. It's actually a great match for my

He ordered tests. Turns out, he was right. Normal vitamin D
levels are 30 to 80. I tested at seven.

What provides vitamin D? Fish, cod, liver, spinach and milk. I
hate all of it. The sun is another source. I love sitting out
in the sun when the weather is nice. But I never go outside in
the winter.

I'll be starting vitamin D supplements soon. They are also
talking about doing a bone scan. That could provide more
information leading to a definite diagnosis.

More medical news... I saw the orthopedic doctor on April 6th.
He said I had golfer's elbow and a rotor cuff injury in both
shoulders. We can't tell if it's inflammation or a tear. The
only test that will show this is an MRI. I can't have an MRI
because I have two cochlear implants.

Now the pain doc says I can't possible have two rotor cuff tears.
It doesn't work that way. But the treatment I'm getting in OT is
helping a little. Even if it's really a lack of vitamin D
causing the problem, I will still need to work on building the
muscles and bones. So OT is a necessity.

So the ortho prescribed a form of steroids for treatment. It's
not through an injection. Instead, the medicine is injected
into a patch that is placed on the skin. The med is transferred
through either electricity or a battery. With e-stim, it takes
about ten minutes. With the battery, it takes 14 hours. I like
the slower delivery method better.

They've had me jumping through hoops on this one. Just one day
after the appointment, we tried to fill the prescription. But
the medicine has been recalled. Apparently the doctor didn't
even know that.

I called his office. The nurse told me to find out what OT is
using to replace this med. Hey, I wasn't even in OT at that
point. Besides, I don't think it's up to the patient to find a
replacement when a doctor prescribes an unavailable medicine.

Regardless, I contacted my old therapist. She said they are
still using the drug. It's only dangerous if you get the
injection. The way we do it is fine. Some pharmacies
completely banned the drug. Others still offer it but it's
seriously back ordered because of the recall. Patients were
still using existing stock and then visiting many pharmacies to
find more.

At first, we couldn't find any. Then I got one tiny bottle. I
used it up in just two weeks. But it did seem to lessen the
elbow pain and numbness in my right shoulder. It's hard to say
if it was helping with the shoulder pain. I wasn't on the
medicine long enough.

When I ran out, that was it. There was nothing else I could do.
Several weeks passed. Then last Friday, my therapist was
excited to tell me that they found a pharmacy in a city 45
minutes away that had the medicine. My father raced out to get
some. He bought just one small bottle, the last they had.

Today I had to make the decision to withhold treatment on my left
shoulder and elbow. I should be getting it there, too, but I'm
worried about running out of the medicine again. It's sad to be
put in this position.

There's more bad news about this one. Even if I can find the
drug, Medicare won't pay for the treatment. I have to pay out
of pocket $95 per treatment, three times a week. I have been
doing it because I really need the treatment. It will be hard
to come up with all that money, though.

I go back to the ortho next week. We think he will do shots in
my shoulders. Hopefully he'll have a better solution for the
elbows. I can not be expected to rely on a medicine that's been

In the meantime, we will follow up on the vitamin D deficiency.
This diagnosis is exciting because, for the first time, we've
actually got proof. The blood test proves the theory. On the
down side, it could take months or years to fix this problem. As
always, I will be patient and hang in there. But it sounds like
we are finally getting somewhere with this.

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