Re: Frustrated

June 28, 2003

[Hi, -

I think we all understand your frustration; it's so difficult when we're

dealing with stuff we can't see, feel or smell, and all the experts have

different recommendations. My feeling about post RAI

precautions is similar to doing the LID - I'd rather be safe than sorry.]

Hi ,

The different and varied recommendations are what's most confusing to us I

think. Feels like the experts aren't all on the same page. Better safe

that sorry is the motto we're trying to follow, yes.

[i agree that 3 feet doesn't seem far enough to me after 24 hours, or even

48 hours. I maintained general precautions for a week, a little longer

from pregnant women and children.]

The dr. even told us this is how he'd handle himself if this was him. What

I didn't appreciate about him is that he kind of mocked what some folks do,

like stay in a hotel for weeks. I don't think it's professional or

courteous to mock what others feel is the safe or right thing to do. 3

feet just doesn't seem like enough, no. I printed out some info from the

list on post-RAI precautions for last night and slid it under her

door. She read it but I think was a bit overwhelmed so we haven't talked

about it yet. I wish we'd talked more about it before the isolation, but

she was in information overload and the hypo-ness was taking a real

toll...sigh.

[i was hospitalized for 3 days, which obviously made it easier (although

the staff at one hospital came in regularly and were in close contact with

me - but it was less than a minute in duration, and they wore radiation

badges). My endo stopped by to visit, but stood in the doorway.]

I can definitely see how, though lonely, isolation makes sense...in a

hospital thought her Nuc Med dr. stood close to her and didn't seem

concerned on her RAI day, 6/26...like it was nothing. told me the

Nuc Med dpt has a geiger device on the wall that moved when she walked by

after her 2 millicuries then after her 150 millicuries.

[After that, I maintained a separate bedroom and bathroom, but felt

comfortable enough to be at opposite ends in the same room and dine at

opposite ends of a long table.]

So do you think on day 4, 5...you were 6 feet or 10 feet away?

[it's the not knowing that makes it so difficult.]

Yes definitely but the different info makes it very confusing. While I

appreciate it, it's confusing too

.... from your next letter ....

Should the trash produces while in isolation or even out of isolation

and using the 3-6 foot rule, be held for 80+ days?

[Most hospitals are required to keep our radioactive trash for up to 90

days, and I was told to do the same at home with anything I brought out of

the hospital. Everything should be securely bagged and put out of reach

for 90 days, preferably in an attic or garage, but even on top of a high

armoire will be sufficient. Double bagging and tossing things out for

normal trash pickup does nothing to protect anyone who will be handling it.]

Ok, 90 days then. 3 months. Wonder why she wasn't told this? Another

confusing aspect of this. We want to do what's right and protect

others. I think we'll double-bag and sit it in the garage, or maybe the

attic. We'll see what thinks.

Thanks ,

C.

February 8, 2008

Arline,

What is the cost of the test? thanks for the info

CWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

February 8, 2008

Arline,

Which tests do you order?

thanksWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

February 8, 2008

arline

which tests do you order?Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

February 9, 2008

Carolyn,

Arline wrote:

" If you go to a urologist, she will look inside your

bladder and be able to tell you if you have something

called they call IC. As far as I know that is the only

way to find out. "

Actually, even if you do go through with this invasive procedure that can be

(and often is) extremely painful, there's no guarantee that it will lead to a

definitive diagnosis. For some, distinct ulcerations CAN be visualized. But

for others in just as much pain -- or even more -- the bladder wall looks

perfectly normal. IC, in most cases, is diagnosed by history and clinical

symptoms, not biopsies and invasive tests. And remember, even if some doctor

pronounces that you have IC, what have you really gained? Just a vague

descriptive name for pain that manifests in or is referred to the bladder -- no

true understanding of the CAUSE of that pain.

If you are, as it appears, so set on trying to get

some kind of definitive diagnosis for your pelvic pain

(something which, as you've discovered, is not all that easy to come by in most

cases), i will say again that the Pelvic and Sexual Health Clinic in Philly

would be one of the better options within relatively easy travelling distance of

you. There, not only do you have an excellent, excellent vulvar specialist

( Kellogg), who, among other things, understands the importance of

evaluating internal pelvic muscle status, but also a bladder specialist

(Whitmore)

Kind of one stop shopping for all your pelvic pain evaluation needs. . .

Arline also writes:

" There is a neurologist at Cornell named Dr. Latov who

has published in the Neurology Journals that all

patients with any kind of neuropathy should be tested

for Gluten Sensitivity. Your neurologist apparently

hasn't read it. "

I completely concur with her advice regarding testing

with Enterolab. It could well be that gluten intolerance/sensitivity is at the

root of many, if

not all, of your pelvic neurological symptoms, regardless of what diagnosis de

jour label is slapped on them. With Enterolab's testing, for a reasonable

price, you'll know one way or the other.

Hollis

February 9, 2008