Update on Karyn ...

[Guest guest]

Hi all,

Just wanted to let you all know what was going on with Karyn. She just has

not felt up to sitting at the computer much lately. As I'm sure many of you

have experience with, it's not just " one thing " going on. She of course has

the constant, classic " pancreatic " pain, which all by itself would be more

than enough to deal with. The level of pain medication she is required to

take to control that at this point makes her pretty sleepy most of the time,

unable to focus very well, and is wreaking havoc with her " short term memory " .

THe other major problem she is having to deal with right now is an extremely

swollen, red, and severely cracked tongue. It is extremely sore, and makes

it difficult to talk, eat, swallow, etc. She has had this symptom, to a

somewhat lesser degree, for quite some time, but with everything else going

on, it never bubbled up to the top of the priority list. At this point it

has been frustrating trying to find a " tongue doctor " , as we are not sure

who would deal with that. Dentists/oral surgeons don't seem to, so at this

point she's trying just to see her PCP to get a referral to an ENT specialist.

Of course, the " next available appointment " is sometime in July ....

She is experiencing problems with her vision as well. Her " double vision "

has returned, and is getting blurry again. She finally got in to see

the neuro ophthamologist a few weeks ago, who precribed " prisms " for her

glasses, and now we are working with her health insurance to get that

approved to cover it.

She is still battling a problem with edema (fluid retention) in her lower

legs. It's a delicate balance. When they give her enough diuretics to

take care of that, it seems to wash out all the potassium out of her system,

even with fairly massive doses of K+ supplements, etc. So that is a constant

struggle as well.

She had to have another root canal procedure done about a month ago, and

it hasn't " healed " properly, so she is trying to get that taken care of, too.

She doesn't really have dental insurance, so she is dealing with the " free

clinic " at the dental school here in town. They do good work, but of course

they are always severely over-booked, and it's just difficult to get an

appointment.

She's also trying to deal with the whole disability issue that many of you

have faced or are facing. She's not been able to work since Sept. '99. She's

been denied twice (since they keep saying her condition should improve, and is

not expected to keep her disabled for more than a year ...). She has an

appeal pending, and has been waiting to be scheduled for a hearing in front

of an administrative law judge since last August. Her biggest fear now is that

her COBRA health insurance will run out before she even has her hearing.

All these things, of course, have her in a pretty deep state of depression.

And on top of that, she seems to be going through menopause right now. She's

been experiencing the classic " hot flashes " syndrome, etc. She really doesn't

know much about what to expect with this, but of course the hormone changes

she is experiencing are wreaking havoc with her emotions as well. She called

the " Menopause Clinic " last week, and of course the first availble time they

can see her is in May ...

Other than that ... ;-)

Seriously, she really can use all the prayers and support she can get right

now .... and so can I! ;-) I know most of you have been there, so know

what it's like. I'm not sure if/when she'll be up to doing anything on the

computer, but I think she'd appreciate receiving cards/notes/letters from

any of you who would like to write. Any who are interested in that, please

contact me off-list at tull@..., and I'll send you her

mailing address.

Thanks for letting ME " vent " a little this morning, and for your continued

prayers and support.

Take care,

--Tull