Update from Carol

November 6, 2004

Hi Group,

I am the one with the hole in the tongue. There is nothing new so far. I

saw my Internist, he was still just flabergasted that the Surgeon left me

hanging like he did. He apologized to me, and said that he received alot of

flack for requesting the hyperbaric treatment without any previous proof of

effectiveness. According to the Disease Specialist - the tongue is supposed to

heal in 2 - 3 days. My Internist is an associate clinical professor at UC

, and he was going to present the situation to his colleagues. Nothing

has

healed. Depending upon what I eat, it gets very sore at night and still

oozes blood (not alot). The hole is still there, and the top of the tongue

opens

moves independently from the bottom - so it really is a big, raw, sore that

kind of looks like the end of an elephant trunk with white & red sores around

it. I am on a duragesic patch 50 mcg and that has helped somewhat. I see

the surgeon on Monday - he wants to do a hearing test???? I am just getting

tired of this, especially when I talk for longer than 1 or 2 sentences and I

start feeling the bottom of the hole dragging and getting between my back

teeth. My sister wants to call attorneys. I called 1 and he said that it was

negligence, not malpractice and he did not think anyone would bother with

something so small! I really am trying to stand tall, like everyone said, but

the

pain and baby food is turning me into a wimp. My sister talks big - but

can't go with me or help. Such a small think, such a big pain. I thank

everyone who is praying for me - I believe that is the only thing that will fix

this. Please take care.

Gentle Hugs & Prayers,

Carol M. in CA

ps - Kathe in CA - I know it is brain fog - but what city do you live in?

November 7, 2004

Carol,

Maybe a healthy person's tongue would heal in 2-3 days, but someone who's immune

system is compromised may have longer healing time. RA drugs affect how we

heal. Why is the surgeon concerned with a hearing test? I'm glad you're

getting to see him, but hope is concerns are in your mouth. Don't feel like a

wimp. I know how painful your tongue is. I know how it hurts when a little

tiny cut in on my tongue.

a

November 7, 2004

,

My Internist contacted my Rheumy last week. I am having a blood test, and

did stop MTX and Enbrel for last week. Both are very concerned, I am to take

my temperature and if it is 100 or + to call them and go to the hospital. I

am using Lortab liquid for break thru pain along with the 50 mcg fentalyn

patch, it helps before I eat. I am not driving, I'm pretty loopy. I thought I

had an appointment Monday, but it is not until 1 week from Thursday - I will

call the surgeons assistant - - again tomorrow. To give you an

example - I take plaquinel which looks like a white aspirin tablet - well it

got

stuck inside the hole! I have also lost alot of taste and feel sensations on

the half of my tongue. I know it is just a tongue! But it really is

bothering me, especially the referred ear and neck pain (surgeon said that can

be

there a long time?)

I asked all the right questions, did all the right things to let the Dr.

know about me. I have seen the surgeon/ENT before, he knows me. Just don't

get

it. and I am letting it get me. I want to go to water therapy, but I am

afraid to do so with the patch. The water temperature is at least 90 and I do

not want the patch to send more Fentalyn. Do you have any infor on that.

Thanks for all the support from everyone,

Gentle Hugs & Prayers,

Carol M. in CA

November 7, 2004