Re: Kinda Bummed and Impatient

[Guest guest]

Oh Bonnie!

How frustrating, especially after you already rescheduled your patients. You

know, I completely understand the impatience of wanting to know a diagnosis.

I don't know of anything that can make waiting for the unknown to end to be

easier. I am so sorry you will not be able to get that done before your trip

to Mayo.

Hang in there though, even though the unknown is hard to bear.

In a message dated 8/19/2004 7:50:01 PM Pacific Daylight Time,

bd4679@... writes:

> Any words of wisdom for the impatient soul? I know

> it could be a whole lot worse....and I kept trying to think of some

> blessings to count (which of course I did) but none the less, I thought

perhaps I

> might be 1 step closer to knowing if I do in fact have the potential signs of

> Fabry's. By the way, those of you in Canada, I hear it is more prevalent in

> your neck of the woods. Do you know any women with the disease? Thank you

> guys for letting me " vent " but, yes I'll hang in there for another couple of

> weeks till I can reschedule. Maybe I need to learn Yoga.Bonnie

>

>

[Guest guest]

Hi , Thanks! Kinda like waiting for the biopsy, but didn't have to

reschedule that (thank goodness) cause it took me long enough to say, OK, I

guess it's time. Yup, I'm a hangin..... thanks again. Bonnie

W4JC@... wrote:Oh Bonnie!

How frustrating, especially after you already rescheduled your patients. You

know, I completely understand the impatience of wanting to know a diagnosis.

I don't know of anything that can make waiting for the unknown to end to be

easier. I am so sorry you will not be able to get that done before your trip

to Mayo.

Hang in there though, even though the unknown is hard to bear.

>

>

[Guest guest]

Bonnie how frustrating! Have you considered contacting another ophthalmologist

to see if you could get checked prior to leaving? Just wanted to let you know

I've been following your Fabry's thread eventhough I haven't answered many of

them. I hope you are able to find some definite answers soon. Your post reminds

me of a plaque my mom has hanging on her wall, it reads: " God grant me

patience, RIGHT NOW! " ) Hang in there and repeat after me....OHMmmmmmmmmmmm

Amy

Kinda Bummed and Impatient

Esp. and Cy, I've been waiting for this day for awhile. I was supposed

to have my eye exam today to see if I had the " starburst pattern " on the cornea

which is positive in 70% of females with Fabry's. The opthamologist's office

called at 7:45 am (8:00 am appointment) that they had to cancel my appointment

cause of water damage to the office. She said she would try and accommodate me

and would call me " right back " . I had to cancel my patients till 11:00 am (I

work 40 miles from home) to schedule this appointment, and was hoping to get it

completed before my trip to Mayo next week. Well, by 9:00 am she still hadn't

called me back so I called her, and she said " so and so can see you next

Monday. " Well I obviously can't reschedule my patients again on Monday, and

will be gone till the following Monday, so it was a bummer. Too impatient I

guess. I figured there's got to be a reason for all this, but ...... still

bummed. Any words of wisdom for the impatient soul? I know

it could be a whole lot worse....and I kept trying to think of some blessings

to count (which of course I did) but none the less, I thought perhaps I might

be 1 step closer to knowing if I do in fact have the potential signs of Fabry's.

By the way, those of you in Canada, I hear it is more prevalent in your neck of

the woods. Do you know any women with the disease? Thank you guys for letting

me " vent " but, yes I'll hang in there for another couple of weeks till I can

reschedule. Maybe I need to learn Yoga.Bonnie

[Guest guest]

Hey Amy, Yes, You're reading my mind tonight. I did contact another

opthamologist. The hardest thing is to find someone who is knowledgeable in

Fabry's because the gal at Mount Sinai said to be sure it is an opthamologist

who is very familiar with the pattern of corneal disorder in women, because it

is hard to detect, even if you are an opthamologist. The next one I called said

" Well I've never heard of that disease but he's been an opthamologist for more

than 20 years so I'm sure he's familiar with it " . I wanted to say (but didn't)

well I've been a nurse for 26 years and there's a lot I still want to learn.....

So I guess just wait and see..... " God, grant me patience RIGHT NOW. " Thanks

Amy... what would I do without you guys .....OHMmmmmmmmmmmmmmmmmmmmmmmmmmmmmm

Hehehe Bonnie

Amy Griswold wrote:

Bonnie how frustrating! Have you considered contacting another ophthalmologist

to see if you could get checked prior to leaving? Just wanted to let you know

I've been following your Fabry's thread eventhough I haven't answered many of

them. I hope you are able to find some definite answers soon. Your post reminds

me of a plaque my mom has hanging on her wall, it reads: " God grant me

patience, RIGHT NOW! " ) Hang in there and repeat after me....OHMmmmmmmmmmmm

Amy

Kinda Bummed and Impatient

[Guest guest]

Sorry Bonnie,

I'm in Canada, but I've never heard of anyone with Fabry's disease.

Pierre

Kinda Bummed and Impatient

> Esp. and Cy, I've been waiting for this day for awhile. I was

supposed to have my eye exam today to see if I had the " starburst pattern "

on the cornea which is positive in 70% of females with Fabry's. The

opthamologist's office called at 7:45 am (8:00 am appointment) that they had

to cancel my appointment cause of water damage to the office. She said she

would try and accommodate me and would call me " right back " . I had to

cancel my patients till 11:00 am (I work 40 miles from home) to schedule

this appointment, and was hoping to get it completed before my trip to Mayo

next week. Well, by 9:00 am she still hadn't called me back so I called

her, and she said " so and so can see you next Monday. " Well I obviously

can't reschedule my patients again on Monday, and will be gone till the

following Monday, so it was a bummer. Too impatient I guess. I figured

there's got to be a reason for all this, but ...... still bummed. Any words

of wisdom for the impatient soul? I know

> it could be a whole lot worse....and I kept trying to think of some

blessings to count (which of course I did) but none the less, I thought

perhaps I might be 1 step closer to knowing if I do in fact have the

potential signs of Fabry's. By the way, those of you in Canada, I hear it is

more prevalent in your neck of the woods. Do you know any women with the

disease? Thank you guys for letting me " vent " but, yes I'll hang in there

for another couple of weeks till I can reschedule. Maybe I need to learn

Yoga.Bonnie

>

>

>