one week." "Medical update" seemed to be the more obvious
choice. But once you've read this blog entry, you'll see why the
other title is more appropriate.
Welcome to my life! It's a mad house of doctors, appointments
and more opinions than a presidential debate! We've got it all
here.... pain, drama, tears, screams, power, and glory... And a
very huge dose of frustration.
I had a recent appointment with Dr. K. He's the pain doctor, the
one I really dislike. This time I had a good interpreter so I
could keep up with the conversation and make it MY appointment.
Nonetheless, he still managed to make me mad.
It's bad enough that one doc said Bursitis and the other said
Fibromyalgia. No, this pain doc had to add to the confusion by
saying I have arthritis of the joints. I'm pretty sure we ruled
that out months ago after a CT scan. Whatever. It doesn't
matter because he wants me to follow up in the rheumatology
department, which I'm already doing for both vitamin D deficiency
and Fibromyalgia.
Dr. K. made some more medicine adjustments. That's all he ever
does. Then he made it perfectly clear that he is done with me.
I wanted to jump up and down with joy. Maybe now I can get a
competent doctor who will actually TREAT my pain.
Before I left, he said that if I'm still in pain in a year or
two, I can come back and we'll consider doing a spinal cord
implant. I have a friend who has this implant. It's given her
her life back. I don't want to go through such an invasive
surgery, but it is always something to think about if all else
fails.
But here's the thing -- what kind of doctor says, "If you still
have pain in one or two years....?" What? I'm supposed to sit
back and hurt like hell for two more years? There is a reason I
hate this doc so much. Truthfully, I wouldn't let him operate on
a single hair on my head That's how little I trust him. We
said "Good bye," and I thought, "good riddance."
This week I had two separate appointments on the same day. It
was a really long and tiring day.
First I saw Dr. E, who is the ortho. He wanted to follow up on
the success of the three recent cortisone shots. I could sum it
up easily for him. The shots were a complete failure.
Dr. E. was kind and apologetic. He examined my elbow three
times. He wanted to make sure he was clear on where the pain was
coming from. in the end, he did what I knew he would. He sent
me away. He now agrees that I have Fibromyalgia. There's
nothing further he can do to help.
I was upset and feeling pretty desperate after Dr. E.'s brush
off. But I wasn't without hope. The second appointment was
the big one. I've been waiting for that one for three months.
It felt like the day would never come. But, finally, here we
are....
This appointment was an assessment to get into the Chronic Pain
Management Program at the Cleveland Clinic. This is a famous,
very intensive program to treat people with chronic pain. They
try to reduce pain. But the real goal is to help patients learn
to come with their pain. The program includes classes,
awareness, PT and OT, shots, medication adjustment and monitoring
and some psych stuff. Fridays are family day, in which family
members will have to attend classes and therapy, too.
If anything can help me now, it's gonna be this program.
However, there was some concern about whether or not I would be
allowed to try it. One doctor told me that he discussed my
case with his boss, and they felt my disabilities would prevent
me from being able to take part in the classes and groups. It
sounded like another "sorry" to me. I've heard it before. I'm
too stubborn to give in when I really want something.
So I went to the assessment. It was long and hard - mentally,
physically and emotionally exhausting. My arms were so tired
from all the signing that they screamed and shook about. In the
back of my mind, I knew that this was my last chance. I HAD to
get in... no matter what.
Now, I am happy to announce that I have been accepted into the
Chronic Pain Management program! We are going to start with a
one week trial. The concern is the need for me to use my arms
so long for communication. We know that extensive use of
tactile sign language contributes to my pain. But I have to be
able to communicate in order to succeed in the program. We'll
see what happens after a week.
I actually think the program might be the death of me. They
aren't kidding when they say it's intensive. 7:30 am to 5:30 pm,
monday through Friday, for three weeks. My arms want to fall off
just thinking about it.
I can't imagine how this works. They take a group of people with
the worst pain problems, and they make them put in 10 hour
days... How can that make pain better? I guess they know what
they are doing... I hope.
We are working on admissions now. I'm sure Medicare will throw a
few obstacles in my way. I'm anxiously awaiting the news that
all is clear, and then they will give me a start date.
Oh, during the assessment, the doctor told me I might not have
Fibromyalgia. That gave me a little hope for a moment. But
then he said I could have Myalgia. Fibromyalgia means pain all
over. With Myalgia, you have pain in just some areas of the
body. It's hard to determine which I have because I don't have
normal feeling below the waist.
Does it even matter? Call it Fibromyalgia or call it Myalgia.
The result is still the same. The pain is still the same. The
treatment is still the same.
I understand something else, though. I may never have had
tendonitis in my elbow. It might have been Myalgia all along,
and that the elbow was just the first place that went. This
would explain why none of the treatments and medication ever
worked. So maybe I had surgery for nothing. But that's more
comforting than believing that having the surgery is what
caused all this trouble.
One last thing. I know my life is getting too crazy when a
doctor wants my mother to look at my poop. We were talking in
depth about every part of my body. He asked if I ever have blood
in my stool. I answered honestly. "I don't know." So he thinks
it will be a good idea to have my mother occasionally examine my
poop before I flush it down the toilet. My mother was a bit
taken aback by this one. I'm not so thrilled with the idea,
either. There are just some things in life that should remain
private.
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