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Thursday, September 29, 2011

Medical Update

I've been quiet on my blog lately. There's a reason, but it's
not pain or medical related. I'm grateful for that. I'll
explain another day. This one is a medical update.

Three important things happened in July. First,, the nasty pain
doctors made me go cold turkey off six major medications. The
withdrawal was like nothing I have ever experienced before.
Pure Hell is the only way I can describe it. I still believe
that it was cruel and reckless for the doctors to do that.
None-the-less, I survived, just like I always do.

Second, other, kinder doctors got me on more appropriate
medication. I'm sleeping well now. The pain is less, and I
can manage it better. I've got more energy, and my mood has
improved. It's amazing what a difference the RIGHT medication
makes on dealing with a chronic disorder.

The third, and most important, factor that happened at the end of
July is that Joseph came home from his long visitation with his
father They say laughter is the best medicine. I'll agree with
that, especially when it's a child's laughter... and when that
child's laughter is paired with such unconditional love. It's
the perfect recipe for healing.

By late August, I was feeling much better. I still have pain,
but massage therapy, varied activities and proper medication is
helping me deal with it. I decided not to attend the intensive
pain program at the Cleveland Clinic. I was afraid that the
need for so much signing and braille reading would actually cause
a set back.

It's ironic. I moaned and groaned, cried and pleaded, begged and
pushed - for six months - trying to get into that program. The
long wait was like torture. Then the start time finally came,
and I no longer wanted to go.

I also decided that for the most part, I'm done with all the big
Clinic doctors. I refuse to go back to the pain clinic. I'm
done with the sleep clinic, rheumatologist and orthopedic
surgeon. I still go for Botox injections and to my genetic
doctor. But that's it.

On September 9th, I saw my local nurse practitioner. I told her
that she's in charge now. We had a good, long appointment. She
really listened to me and was willing to take over all my
prescriptions. I'll do much better off with just an NP.
That's more irony for you. The big wig specialists can't seem to
help me but the low level nurse can. Maybe it's because she
takes the time to talk and listen to me. She sees me as a human
and clearly wants to help make me feel better.

Today I had one more appointment at the Clinic. This was with
one of the good docs. Since I'm doing so well, I don't need to
go back to him, either. But he's always available via email.

Anyway, my mother decided at the last moment that she wasn't
going with us. She was afraid we wouldn't be back before Joseph
came home from school. She was right. However, if we had
planned ahead, he could have gone into after school care.

So it was just me and my dad. I don't like to travel alone with
him. He can't sign or even fingerspelling. Plus he isn't very
observant when guiding me around. I keep telling him he doesn't
get ten points every time he runs me into a wall.

It finally happened. No interpreter came, and my father
couldn't even tell me what was going on. (sigh) Why does this
kind of situation have to happen so often? It's unacceptable
when, for whatever reason, an interpreter doesn't show up.

I had to force my dad to use the DBC to communicate with me. He
gave me updates. The interpreter wasn't here. They called the
agency three times. The interpreter was late. No interpreter
ever did arrive.

The doctor was running around trying to figure out what to do,
too. Like I said, he's a caring doctor, and he did not like this
situation at all.

Finally he saw how my father was typing to me and offered to use
the DBC for the appointment. Normally, I'd only use it for a
meeting or appointment if I had the USB keyboard. I can't
imagine trying to thumb type on a cell phone for an hour. He
did it, though. We were finally able to take care of business.

I'm free! I don't even know when my next doctor appointment is.
Maybe Botox is in December or January. I don't go back for
genetics until February. This is how life should be. With a
happy heart, I'm pleased to say this will be my last med update
for a long while.

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