FSHD Chat

sweetheaven (Nov 9, 2009 7:12:32 PM)
(This user has moved to Mitochondrial Chat)

wolflady (Nov 9, 2009 8:44:48 PM)
(This user has entered FSHD Chat)

froglady (Nov 9, 2009 8:45:26 PM)
(This user has entered FSHD Chat)

wolflady (Nov 9, 2009 8:45:41 PM)
Hi Froggy

froglady (Nov 9, 2009 8:46:02 PM)
Hello there. How are you tonight

froglady (Nov 9, 2009 8:46:11 PM)
Did you see the doc this week?

wolflady (Nov 9, 2009 8:46:24 PM)
oh I've been better

wolflady (Nov 9, 2009 8:46:45 PM)
Yes I went to the Doctor last tuesday

wolflady (Nov 9, 2009 8:46:59 PM)
He order an ultrasound

froglady (Nov 9, 2009 8:47:33 PM)
Thought for the night: Be as loving as you can, as often as you can, for as many people as you can, for as long as you can. Why should we do this: Because: from an article in Readers Digest

wolflady (Nov 9, 2009 8:47:38 PM)
then I was held hostage at the hospital until i was sent to the u of Minn

froglady (Nov 9, 2009 8:47:55 PM)
So what now?

wolflady (Nov 9, 2009 8:48:16 PM)
U of Minn for 4 days

froglady (Nov 9, 2009 8:48:33 PM)
You must really have a big problem. What's up?

wolflady (Nov 9, 2009 8:49:02 PM)
I have a blood clot in my right arm pit and 2 1/2 inches of the main vein is 100% blocked

froglady (Nov 9, 2009 8:49:16 PM)
Oh my goodness. That is not good news

froglady (Nov 9, 2009 8:49:34 PM)
No wonder you were in such pain. I hear blood clots cause extreme pain

steve-k (Nov 9, 2009 8:50:21 PM)
(This user has entered FSHD Chat)

wolflady (Nov 9, 2009 8:50:31 PM)
The U of Minn wouldn't do anything for me, sent me home with my arm wrapped in an ace bandage and pain pills, said go see your regular doctor on momnday

froglady (Nov 9, 2009 8:50:36 PM)
Hello Steve-K: Welcome to the FSHD Chat

froglady (Nov 9, 2009 8:51:09 PM)
Wolf, did they not at least put you on a blood thinner?

steve-k (Nov 9, 2009 8:51:10 PM)
Hello, all

wolflady (Nov 9, 2009 8:51:34 PM)
they said its to dangerous cause i some times fall

froglady (Nov 9, 2009 8:52:00 PM)
I am so sorry to hear this wolf

froglady (Nov 9, 2009 8:52:08 PM)
How are you doing tonight Steve?

froglady (Nov 9, 2009 8:52:59 PM)
I finally got my bi-pap machine

wolflady (Nov 9, 2009 8:53:15 PM)
but i wwent back to the clinic today, my doctor was out of the oiffice but a different doctor put me on Lovenox injections once a day for 7 days until i can see my doctor next tuesday

froglady (Nov 9, 2009 8:53:29 PM)
That is good at least

steve-k (Nov 9, 2009 8:53:40 PM)
Health pretty good. Thnx! What type of mask did you get for your bi-pap?

froglady (Nov 9, 2009 8:53:42 PM)
I wonder why you got those blood clots in the first place

wolflady (Nov 9, 2009 8:53:53 PM)
the injections go in the tummy,,,,,,fun time not!!!!!!!!

froglady (Nov 9, 2009 8:54:15 PM)
full face mask Steve

froglady (Nov 9, 2009 8:54:26 PM)
Oh my wolf. That is no fun at all for sure

froglady (Nov 9, 2009 8:54:41 PM)
Steve do you use a bi-pap?

steve-k (Nov 9, 2009 8:54:47 PM)
Yeah, after a few of them you're stomach feels/looks like a pin cushion.

wolflady (Nov 9, 2009 8:55:14 PM)
i don't know froggy, they said it is very rare to get them in the arm pit, i said "leave it to me, i'm the first for lots of things abnormal" :-)

steve-k (Nov 9, 2009 8:55:37 PM)
Yeah, I've had one for 3-4 years. Just started using it regularly this past su,,er.

froglady (Nov 9, 2009 8:55:39 PM)
You're the first one I've ever heard of getting one there

froglady (Nov 9, 2009 8:56:03 PM)
Steve, do you put anything in your nose to keep it from drying out so much?

wolflady (Nov 9, 2009 8:56:16 PM)
thats what my arm looks like after 5 days of blood being drawn,,,,,looks like i'm a drug addict lol

froglady (Nov 9, 2009 8:56:18 PM)
this by-pap is hard to get used to for sure

froglady (Nov 9, 2009 8:57:09 PM)
Wolf, the arm is too close to the head so I would think this should be very much of a concern to the doctors

steve-k (Nov 9, 2009 8:57:50 PM)
My bi-pap has a water tank attached, so the air is moist.

froglady (Nov 9, 2009 8:58:22 PM)
Mine does too, but my nose still doesn't feel right. It may be that I just have to get used to it feeling different

steve-k (Nov 9, 2009 8:58:45 PM)
It makes me feel a LOT better in the morning.

froglady (Nov 9, 2009 8:58:47 PM)
Do you feel a lot different using yours Steve?

wolflady (Nov 9, 2009 8:58:51 PM)
with my doctor it was thats why he sent me to the U of Minn, the doctors down ther wouldn't help me, tried telling me its permanent, I say no its not, I'll go else where until I find someone to fix me

froglady (Nov 9, 2009 8:59:01 PM)
LOL you answered my question before I entered it Steve

froglady (Nov 9, 2009 8:59:38 PM)
For Pete's sake Wolf. I hope they are wrong

froglady (Nov 9, 2009 9:00:11 PM)
Wolf, can you use that arm okay or not?

wolflady (Nov 9, 2009 9:00:53 PM)
its really hard communicating with people who have a real bad accent and speak "broken english" and they look at you like you are speaking a foreign language

steve-k (Nov 9, 2009 9:00:55 PM)
I used to take it off after 1-2 hrs. I sledom sleep thru the night. I was told that you need to have it on for 5+ hrs to get the best effect.

froglady (Nov 9, 2009 9:02:08 PM)
Ic. well I made it that long last night. I did not get enough explanation, but it was my own fault. She kept asking me if I had questions, but at that time I didn't know what to ask

steve-k (Nov 9, 2009 9:02:11 PM)
I was told to get one because my diaphram is weak and I use my chest muscles to help out w/ breathing and they need a good rest each night.

wolflady (Nov 9, 2009 9:02:26 PM)
no froggy, it's hurting pretty good now trying to type, so i am switching back and forth from right to left arm.........i took my tylenol3 bfore but it hasn't kicked in yet

froglady (Nov 9, 2009 9:02:49 PM)
Well that is just simply a bummer Wolf

Ole Barn (Nov 9, 2009 9:03:21 PM)
(This user has entered FSHD Chat)

froglady (Nov 9, 2009 9:03:34 PM)
There he is that Ole Barn. Welcome aboard my friend

froglady (Nov 9, 2009 9:04:16 PM)
How are things in the northwest tonight Barney

wolflady (Nov 9, 2009 9:04:24 PM)
my right arm has been swollen from my fingers to my shoulder for 2 weeks now,,,and i'm right handed, makes a lot of things difficult to do, but i'm surviving

froglady (Nov 9, 2009 9:04:50 PM)
I know you were telling us that last week, and I was wondering what could possibly be the wrong

wolflady (Nov 9, 2009 9:04:56 PM)
oops sorry, Hi Steve, Hi Barney

froglady (Nov 9, 2009 9:05:35 PM)
Barney has to set up his machine before he can begin. He has voice recognition

Ole Barn (Nov 9, 2009 9:05:43 PM)
Hiall, must se up

froglady (Nov 9, 2009 9:06:15 PM)
Wolf, do you not have breathing issues?

steve-k (Nov 9, 2009 9:06:33 PM)
Hi, wolf, sorry to hear your arm hurts you so.

wolflady (Nov 9, 2009 9:07:11 PM)
it was really something though to leave my house at 10:50 am on tuesday for just a simple doctor visit and not be home again until 7:00 pm saturday night lol

froglady (Nov 9, 2009 9:07:33 PM)
I guess not. Where is the U of MN

wolflady (Nov 9, 2009 9:07:50 PM)
i'm starting to get "winded" when trying to cdo things lately

Ole Barn (Nov 9, 2009 9:07:51 PM)
I'm back!

froglady (Nov 9, 2009 9:08:03 PM)
Great Barn

froglady (Nov 9, 2009 9:08:14 PM)
Barn, do you use a bi-pap machine for breathing?

wolflady (Nov 9, 2009 9:08:21 PM)
u of MN is 2 1/2 hour drive southeast of me

froglady (Nov 9, 2009 9:08:34 PM)
Ic. did you drive down alone?

froglady (Nov 9, 2009 9:08:56 PM)
I am lucky to have the University inTucson about 35 or 40 miles from me

froglady (Nov 9, 2009 9:09:08 PM)
I mean the hospital

wolflady (Nov 9, 2009 9:09:12 PM)
no, i had a friend drive me there from the 1st hospital i was at i don't drive cities at all

froglady (Nov 9, 2009 9:09:20 PM)
ic

beckdildal (Nov 9, 2009 9:09:26 PM)
(This user has entered FSHD Chat)

wolflady (Nov 9, 2009 9:09:36 PM)
hi Beck

froglady (Nov 9, 2009 9:09:36 PM)
Hello there my child. Welcome aboard

Ole Barn (Nov 9, 2009 9:09:46 PM)
Not yet, but my brother uses day C-pap

froglady (Nov 9, 2009 9:09:54 PM)
Ic

beckdildal (Nov 9, 2009 9:10:00 PM)
hello there evry1

froglady (Nov 9, 2009 9:10:05 PM)
Beck, I got the bi-pap this week

beckdildal (Nov 9, 2009 9:10:28 PM)
you did, good for you, hoe is it going?

beckdildal (Nov 9, 2009 9:10:42 PM)
how

froglady (Nov 9, 2009 9:10:47 PM)
Still getting used to it. It is very uncomfortable, but I think it is helping

Ole Barn (Nov 9, 2009 9:10:52 PM)
Thus far, my pulmonary function has been 95+

froglady (Nov 9, 2009 9:11:03 PM)
i'm not liking the way my nose feels the next morning

froglady (Nov 9, 2009 9:11:14 PM)
Wow, Barn, that is just great

beckdildal (Nov 9, 2009 9:11:27 PM)
how does it feel?

Ole Barn (Nov 9, 2009 9:11:30 PM)
My brother says getting a properly fitting mask is 90% of the success

steve-k (Nov 9, 2009 9:11:34 PM)
my lungs are envious

beckdildal (Nov 9, 2009 9:11:50 PM)
hi steve

Ole Barn (Nov 9, 2009 9:11:54 PM)
I was fortunate that as a youngster I was very active physically

beckdildal (Nov 9, 2009 9:12:00 PM)
i don't think we've met before

froglady (Nov 9, 2009 9:12:08 PM)
I think the mask may not be just right. My nose feels too dry and I have the moisture

beckdildal (Nov 9, 2009 9:12:25 PM)
try using the ayr nasal gel

steve-k (Nov 9, 2009 9:12:33 PM)
u should try "nasal pillows' if u can, F-lady.

froglady (Nov 9, 2009 9:12:46 PM)
Okay, Beck, I will do that. I thought you might have an answer for me. Thank you

Ole Barn (Nov 9, 2009 9:13:11 PM)
Any thoughts on the house passing medical insurance reform?

beckdildal (Nov 9, 2009 9:13:12 PM)
it takes a while to get used to and at first it does dry thing out

froglady (Nov 9, 2009 9:13:21 PM)
Steve, I am not sure what you mean. Is it something that attaches to the mask?

beckdildal (Nov 9, 2009 9:13:35 PM)
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froglady (Nov 9, 2009 9:13:50 PM)
Yes, Barn, I have lots of thoughts about it, but mostly I just feel confused

wolflady (Nov 9, 2009 9:13:57 PM)
oops we lost Beck

froglady (Nov 9, 2009 9:14:08 PM)
It just barely passed the House

beckdildal (Nov 9, 2009 9:14:09 PM)
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wolflady (Nov 9, 2009 9:14:17 PM)
wb Beck

froglady (Nov 9, 2009 9:14:17 PM)
wb beck. Get the boot did you?

froglady (Nov 9, 2009 9:14:33 PM)
What do you think about it Barn?

beckdildal (Nov 9, 2009 9:14:38 PM)
i booted myself out

froglady (Nov 9, 2009 9:15:40 PM)
Beck, are you faithful to use your bi-pap

beckdildal (Nov 9, 2009 9:15:57 PM)
http://www.bfascher.com/ayr/ayrsalinenasalgel.html

froglady (Nov 9, 2009 9:16:12 PM)
Thanks Beck

beckdildal (Nov 9, 2009 9:16:14 PM)
i try, but there are some nights when i don't use it

steve-k (Nov 9, 2009 9:16:40 PM)
it's a different kind of mask. it has a strip of hard plastic that attaches to the head piece, goes down the outside of the nose (w/ a smallish hose) and has to nozzels - 1 for each nostril

froglady (Nov 9, 2009 9:16:46 PM)
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wolflady (Nov 9, 2009 9:16:48 PM)
Beck, i went back to the clinic today and now i am on lovenox injections once a day in the tummy for 7m days until i can see my regular doctor next tuesday

beckdildal (Nov 9, 2009 9:16:56 PM)
oops

beckdildal (Nov 9, 2009 9:17:23 PM)
that's good that they are giving you something wolflady

froglady (Nov 9, 2009 9:17:38 PM)
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beckdildal (Nov 9, 2009 9:17:44 PM)
wb froglady

wolflady (Nov 9, 2009 9:17:45 PM)
wb froggy

beckdildal (Nov 9, 2009 9:18:00 PM)
steve, have you tried the nasal pillows?

froglady (Nov 9, 2009 9:18:05 PM)
I did the same thing Beck did

froglady (Nov 9, 2009 9:18:49 PM)
Beck, I was trying to highlight that site you gave me and booted myself. At least I got the site in my bookmark. LOL

steve-k (Nov 9, 2009 9:18:59 PM)
yes, Beck. I have 2 headsets. 1 w/ pillows and the other w/ a full nose piece.

Ole Barn (Nov 9, 2009 9:19:02 PM)
FrogLady, the medical insurance industry did its best to confuse and instill fear regarding medical insurance reform.

beckdildal (Nov 9, 2009 9:19:17 PM)
i've tried them, but i went back to wearing the mask. i use a comfort gel mask.

beckdildal (Nov 9, 2009 9:19:51 PM)
wolflady, was the clinic you went to close to home?

wolflady (Nov 9, 2009 9:20:14 PM)
yes, Beck, it the clinic i always go to

steve-k (Nov 9, 2009 9:20:44 PM)
K like them a lot, but the head piece is top heavy and fall off to one side. So, I use the full nose one lately.

froglady (Nov 9, 2009 9:20:47 PM)
Beck, have you tried other masks. Mine is very soft, but it gets out of place at night and I have to take the mask off and get it all back in order. Aggravating

wolflady (Nov 9, 2009 9:20:48 PM)
the same one that sent me to the U of MN

wolflady (Nov 9, 2009 9:21:23 PM)
they were all surprised the u of MN wouldn't help me

Ole Barn (Nov 9, 2009 9:21:49 PM)
Collectively they spent millions of dollars to misinform the public. They also engaged in a disinformation campaign at every turn. They put pressure on the legislators to whom they donated millions of dollars to such as Lieberman, Baucus, and Grassley to do their bidding. Not that they had to try very hard. Lieberman has received $13 million in donations, Baucus has received $7 million in donations and Grassley has received over $6 million in donations. We are getting the best laws money can buy.

beckdildal (Nov 9, 2009 9:21:52 PM)
yes i've tried a full face mask that covers the mouth too, but i drool so much that i didn't like that one

steve-k (Nov 9, 2009 9:22:17 PM)
F-lady, that happened to me - thats partly why i didn't use it for a while. The one I have, has 2 velcro straps that hold it on tightly.

wolflady (Nov 9, 2009 9:22:19 PM)
the blockage and clot started because the 1st rib bone and collar bone is compressing the main vein from the arm to the heart

beckdildal (Nov 9, 2009 9:23:05 PM)
is that due to the FSH wolf?

wolflady (Nov 9, 2009 9:23:15 PM)
i guess so

steve-k (Nov 9, 2009 9:23:49 PM)
Beck, I just have a full nose mask. I don't think I could handle one that covered my mouth 2.

beckdildal (Nov 9, 2009 9:24:06 PM)
do you wear a chin strap too froglady? that help to keep the mask in place.

wolflady (Nov 9, 2009 9:24:16 PM)
my doctor said i may need to have a piece of the rib bone removed the U of MN won't do anything

froglady (Nov 9, 2009 9:25:18 PM)
Mine covers my mouth as well as my nose. It is adjustable

beckdildal (Nov 9, 2009 9:25:40 PM)
wow, that sounds pretty drastic wolflady.

beckdildal (Nov 9, 2009 9:26:08 PM)
oic if it covers your mouth then you wouldn't need a chin strap

wolflady (Nov 9, 2009 9:26:21 PM)
i know but its better than to have the vein clog up more down my arm

beckdildal (Nov 9, 2009 9:26:36 PM)
steve, how long have you known that you have fsh?

froglady (Nov 9, 2009 9:26:49 PM)
I usually breathe through my nose so they said I needed the mask that covered my mouth too

steve-k (Nov 9, 2009 9:27:19 PM)
Rather scary choice, w-lady.

froglady (Nov 9, 2009 9:27:25 PM)
Wolf, when will you see your regular doctor. Also have you discussed this with the MDA Doc?

wolflady (Nov 9, 2009 9:28:19 PM)
i see my regular doctor next tuesday and i'm going to call my MD doctor tomorrow

beckdildal (Nov 9, 2009 9:28:25 PM)
Barn, the health care bill goes to the Senate now doesn't it?

steve-k (Nov 9, 2009 9:28:30 PM)
Beck, I've known 30+ yrs. My onset was in my late teens, but I wasn't diagnosed until I was 20+

froglady (Nov 9, 2009 9:28:33 PM)
That is a good thing Wolf

beckdildal (Nov 9, 2009 9:29:59 PM)
sounds similar to mine, i was dx at 20 and that was over 25 yrs ago. are you still walking?

froglady (Nov 9, 2009 9:30:14 PM)
I have a pulmonary disease plus I have pectus excavatum, which means a caved in chest and breathing is becoming difficult

Ole Barn (Nov 9, 2009 9:30:16 PM)
Yes Beck, now you get to see the dog and pony show that the Republicans put on along with Joe Lieberman. You will pardon me if I seem a bit prejudice, because I am!

wolflady (Nov 9, 2009 9:30:20 PM)
if i let things go as they are, i'm scared i'll lose all function of my arm because the pain gets so bad and the swelling is so bad down to my fingers i can't use my arm much now

froglady (Nov 9, 2009 9:31:01 PM)
Wolf, we will just pray that you will come through this okay

beckdildal (Nov 9, 2009 9:31:10 PM)
it seems like it happened rather suddenly, were there any warning signs wolflady?

wolflady (Nov 9, 2009 9:31:39 PM)
i will froggy, i'm going to fight this with everything i got in me and thank you

Ole Barn (Nov 9, 2009 9:31:57 PM)
Wolf lady, pardon me for acting like your father, but, you must go see a doctor at the start of a problem not when it gets so bad you can barely function

Ole Barn (Nov 9, 2009 9:32:48 PM)
All

wolflady (Nov 9, 2009 9:33:03 PM)
i guess maybe the "spider veins that showed up on my right shoulder a couple years ago was the start of it blocking up, but i never knew that, there was no pain or swelling until 2 weeks ago

froglady (Nov 9, 2009 9:33:35 PM)
If they can send men in to outer space they can fix your arm, and I have faith they will just do it

wolflady (Nov 9, 2009 9:34:12 PM)
i did ask when the spider veins started and was told it was nothing to worry about

Ole Barn (Nov 9, 2009 9:35:01 PM)
It is a given we are all medically compromised. Depending on the degree of disablement, even a minor thing can be critical. Sometimes I think I'm hypochondriac, but thus far I have avoided any major medical problems.

froglady (Nov 9, 2009 9:35:42 PM)
I wonder where in the world that Brit is tonight. It is not like him not to contact me if he isn't going to be on. Hope he is okay

Ole Barn (Nov 9, 2009 9:35:44 PM)
Of course, I still have FSHD LOL

froglady (Nov 9, 2009 9:35:49 PM)
As you all can tell, I am a worrier

paper (Nov 9, 2009 9:36:10 PM)
(This user has entered FSHD Chat)

beckdildal (Nov 9, 2009 9:36:18 PM)
hello there paper

froglady (Nov 9, 2009 9:36:32 PM)
Welcome aboard Paper. Wondered where you were

Ole Barn (Nov 9, 2009 9:36:33 PM)
Britt seemed to be on a downer last week

paper (Nov 9, 2009 9:36:51 PM)
hi all

wolflady (Nov 9, 2009 9:36:59 PM)
I'll get it fixed, froggy, I will go to the Mayo Clinic or Fargo or Duluth, but i will find someone to fix me, i'm not stopping until i do

froglady (Nov 9, 2009 9:36:59 PM)
I don't think Brit is feeling all that well lately

steve-k (Nov 9, 2009 9:37:04 PM)
Who is Brit? is that a person's name or where they're from???

froglady (Nov 9, 2009 9:37:12 PM)
that is the spirit Wolf

froglady (Nov 9, 2009 9:37:25 PM)
Steve, he is one of the hosts of this chat

wolflady (Nov 9, 2009 9:37:29 PM)
Hi Paper

Ole Barn (Nov 9, 2009 9:37:56 PM)
Since I am a semi regular, I don't know anyone real well. I have found most of the persons here to be interesting and informative

paper (Nov 9, 2009 9:37:58 PM)
hi

froglady (Nov 9, 2009 9:38:03 PM)
Paper, what is happening in your life since we last chatted?

froglady (Nov 9, 2009 9:38:24 PM)
I agree Barney

paper (Nov 9, 2009 9:38:33 PM)
i have stiches

froglady (Nov 9, 2009 9:38:43 PM)
You do, what happened?

beckdildal (Nov 9, 2009 9:38:45 PM)
from what paper?

wolflady (Nov 9, 2009 9:38:47 PM)
oh no, w2hat did you do?

paper (Nov 9, 2009 9:38:55 PM)
that skin cancer

wolflady (Nov 9, 2009 9:39:07 PM)
oh goodness

Ole Barn (Nov 9, 2009 9:39:11 PM)
Basal cell or melanoma?

froglady (Nov 9, 2009 9:39:11 PM)
Ic. Hopefully tht will take care of it

paper (Nov 9, 2009 9:39:28 PM)
basal

beckdildal (Nov 9, 2009 9:39:49 PM)
i have a friend who just had skin cancer removed from her nose

paper (Nov 9, 2009 9:39:51 PM)
6 stitches

froglady (Nov 9, 2009 9:40:02 PM)
It must have been pretty large paper

paper (Nov 9, 2009 9:40:02 PM)
and they hurt

Ole Barn (Nov 9, 2009 9:40:10 PM)
My brother has had basal cell several times over the last 15 to 20 years

paper (Nov 9, 2009 9:40:20 PM)
ya it is 4 in long

beckdildal (Nov 9, 2009 9:40:31 PM)
wow

Ole Barn (Nov 9, 2009 9:40:44 PM)
Fortunately, it's treatable and does not spread quickly

froglady (Nov 9, 2009 9:40:51 PM)
My son had one removed from his nose a couple of years ago, and it will come back they said. He waited far too long and it was deep

paper (Nov 9, 2009 9:40:53 PM)
yep

froglady (Nov 9, 2009 9:41:21 PM)
That was big Paper

beckdildal (Nov 9, 2009 9:41:28 PM)
i'm doing pretty good this week

froglady (Nov 9, 2009 9:41:42 PM)
We have more skin cancer here than most states do

Ole Barn (Nov 9, 2009 9:42:01 PM)
Too much time in the direct sunlight?

Ole Barn (Nov 9, 2009 9:42:16 PM)
I know that was my brother's problem living in the high desert country in Eastern Washington.

beckdildal (Nov 9, 2009 9:42:40 PM)
does anyone here know if you can fast when you have FSH?

froglady (Nov 9, 2009 9:43:11 PM)
I don't know Beck. I wouldn't think it would be a good thing though

Ole Barn (Nov 9, 2009 9:43:13 PM)
I think you mean, isn't medically advisable to fast?

wolflady (Nov 9, 2009 9:44:26 PM)
i don't know, ask the U of MN, i was allowed to eat 3 meals in 4 days lol

beckdildal (Nov 9, 2009 9:44:30 PM)
do you know of any articles on the subject?

froglady (Nov 9, 2009 9:44:40 PM)
I do not Beck

Ole Barn (Nov 9, 2009 9:44:56 PM)
Since the do not rebound as quickly from stressors that other people do, my best guess is don't do anything without consulting a dietitian and your doctor.

paper (Nov 9, 2009 9:45:06 PM)
google it lol

steve-k (Nov 9, 2009 9:45:38 PM)
It probably depends on how long, Beck. I don't think a couple of days would hurt, but anymore could be a drain. Why fast tho?

froglady (Nov 9, 2009 9:46:24 PM)
Beck, could you call your MD doctor and ask. A regular doctor just simply don't know about FSH

froglady (Nov 9, 2009 9:46:44 PM)
I have to educate every new doctor I am sent to

beckdildal (Nov 9, 2009 9:47:01 PM)
well our pastor at church has asked the congregation to fast one meal and pray.

froglady (Nov 9, 2009 9:47:06 PM)
I quit going in with my husband to see his doctors because they focused more on me than on him

beckdildal (Nov 9, 2009 9:47:33 PM)
each day this week

froglady (Nov 9, 2009 9:47:35 PM)
Beck, I really don't think one meal would hurt you, but I really don't know that

froglady (Nov 9, 2009 9:47:48 PM)
Oh no, now, that may be too much Beck

froglady (Nov 9, 2009 9:48:09 PM)
You can pray just as hard without fasting, don't you think?

beckdildal (Nov 9, 2009 9:48:19 PM)
i could email dr. carter. he is my MD doctor

froglady (Nov 9, 2009 9:48:29 PM)
Why don't youdo that Beck

beckdildal (Nov 9, 2009 9:49:31 PM)
have any of you hear of doing that? my grandma used to, and she went on a 30 day fast one time

froglady (Nov 9, 2009 9:49:55 PM)
Oh yes, Beck, they fast a lot at the churches I have been associated with

paper (Nov 9, 2009 9:50:07 PM)
i think 30 days would hurt someone with md

froglady (Nov 9, 2009 9:50:10 PM)
But I never did it

Ole Barn (Nov 9, 2009 9:50:20 PM)
Froglady you just said a mouthful. I changed primary physicians, requested a referral to the MD clinic, and he referred me to the MS clinic! What an idiot. He then suggested that I take it up with the insurance company who said I didn't need a referral. However, I did not discover the referral was made until five weeks after I had requested it. The MD clinic request a physician referral was needed since I had not been seen in clinic for over three years

froglady (Nov 9, 2009 9:50:20 PM)
I think 30 days would hurt someone without it

wolflady (Nov 9, 2009 9:50:59 PM)
i try too educate them froogy but it doesn't always work,,,,,,,,,one doctor i saw last week said she didn't know if the bone protruding out in my shoulder was my scapula or if i dislocated the my shoulder, i told her its always been that way and the left side is the same, its my shoulder blade, she rolled her eyes at me lol

froglady (Nov 9, 2009 9:51:24 PM)
Barn, these days you really have to be your own medical advocate. These doctors are taking on too much of a caseload and are missing far too much

froglady (Nov 9, 2009 9:52:07 PM)
Fool doctors

Ole Barn (Nov 9, 2009 9:52:37 PM)
Yes I'm well aware that, however, the doctor was looking right at the computer note saying that I had FSHD. He then had the audacity to confirm his screwup in a letter she sent me. I was forced to disabuse him of his errors and suggests you might want to be a little more careful in his communication style.

froglady (Nov 9, 2009 9:52:57 PM)
LOL Barn.you go

beckdildal (Nov 9, 2009 9:53:34 PM)
that's why i try to get into clinic at least once a yr, so if i ever really need to get in right away i can.

froglady (Nov 9, 2009 9:53:35 PM)
All jokes aside, we do need to be more persistant in our care

Ole Barn (Nov 9, 2009 9:53:46 PM)
I can be "the North end of a southbound horse" when necessary.

paper (Nov 9, 2009 9:53:55 PM)
lol

froglady (Nov 9, 2009 9:53:58 PM)
LOL I believe you Barn

steve-k (Nov 9, 2009 9:53:59 PM)
not recognizing winged scapula is exceeding lame!

wolflady (Nov 9, 2009 9:54:18 PM)
i had a doctor talk to me like i was a little kid last week instead of a 44 year old give me a break

paper (Nov 9, 2009 9:54:51 PM)
i hate drs like that i usually tell them off when they start in like that

froglady (Nov 9, 2009 9:55:02 PM)
One day they were not paying enough to my queries and I lifted my seat on my scooter and stood up to talk to them

wolflady (Nov 9, 2009 9:55:13 PM)
i wanted too but bit my tongue

froglady (Nov 9, 2009 9:55:14 PM)
Attention

paper (Nov 9, 2009 9:55:21 PM)
or say something like when is my birthday

paper (Nov 9, 2009 9:55:47 PM)
and when they go looking in the chart i say i wasnt born yesterday i can tell you that

Ole Barn (Nov 9, 2009 9:55:48 PM)
Before I retired I was a well respected public employee working as a case manager for the Department of human services in the state of Oregon. I suddenly have become unable to speak, because I'm now on a chair. So people began asking my wife what I want! Incredibly, she told them to ask me.

froglady (Nov 9, 2009 9:56:03 PM)
Like my three year old granddaughter did the other day when her mom would not pay attention to her. She said, "Hellllllowwww"

wolflady (Nov 9, 2009 9:56:14 PM)
lol

beckdildal (Nov 9, 2009 9:56:46 PM)
seems to be a common phenomenon, one becomes "invisible"

paper (Nov 9, 2009 9:57:03 PM)
i think we all know how to put people in their places lol when we have to

steve-k (Nov 9, 2009 9:57:10 PM)
While we're ranting (:-0, I hate it when medical people talk to my caretaker (usually a young, strong not so educated person) and not me. As if I don't know what is happening to./with my body.

Ole Barn (Nov 9, 2009 9:57:13 PM)
This is a common occurrence among most persons using wheelchairs

froglady (Nov 9, 2009 9:57:13 PM)
Sounds like Paper. lol

wolflady (Nov 9, 2009 9:57:34 PM)
thats why i said in my interview for the MDA this past summer "we are not retarded, our muscles don't work but there is nothing wrong with our brains"

paper (Nov 9, 2009 9:57:59 PM)
i am usually not a smarty pants but some time you just have to

beckdildal (Nov 9, 2009 9:58:26 PM)
my FSH doc tells me that someof the most intelligent people he has met have FSH

steve-k (Nov 9, 2009 9:58:42 PM)
Well, actually there MIGHT be, Wolf (:-), but there are a lot more parapalegic minds than ours.

froglady (Nov 9, 2009 9:58:50 PM)
Another thing while we are fussing. I hate it when doctor's offices do not have scales you can get on or beds you can get on.

beckdildal (Nov 9, 2009 9:59:01 PM)
i'm lucky because he respects my opinion and so does my family practice doc, whom i have known for the past 26 yrs.

Ole Barn (Nov 9, 2009 9:59:12 PM)
Fortunately, I am able to go to most appointments on my own. My wife/caretaker sends a paper with questions written on it for the doctor.

wolflady (Nov 9, 2009 9:59:17 PM)
or toilets you can get up of from lol

froglady (Nov 9, 2009 9:59:27 PM)
That the most Wolf

paper (Nov 9, 2009 9:59:29 PM)
amen frog and wolf

froglady (Nov 9, 2009 9:59:52 PM)
Or doors it would take superman to open

Ole Barn (Nov 9, 2009 9:59:55 PM)
I would think that is an ADA issue

froglady (Nov 9, 2009 10:00:05 PM)
Especially the bathroom doors

paper (Nov 9, 2009 10:00:05 PM)
yep that too

beckdildal (Nov 9, 2009 10:00:35 PM)
mom had to stay in her chair at her last dental appointment becase she couldn't transfer

beckdildal (Nov 9, 2009 10:00:52 PM)
i'm thinking it is time for her to get the tilt feature

paper (Nov 9, 2009 10:01:03 PM)
wensday i go for that swollow test so not looking forward to that

wolflady (Nov 9, 2009 10:01:04 PM)
The U of Mn hospital of all places didn't have handicap assessible showers, I was so shocked

froglady (Nov 9, 2009 10:01:08 PM)
My primary doctor has a walker fixed around their scales and it is so simple to get on and off it, but their office is the only one I go to who has that

steve-k (Nov 9, 2009 10:01:14 PM)
well, it's 11pm on the east coast. gotta go. thnx and g'night all

froglady (Nov 9, 2009 10:01:25 PM)
It is not too bad paper

steve-k (Nov 9, 2009 10:01:28 PM)
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beckdildal (Nov 9, 2009 10:01:35 PM)
night steve

froglady (Nov 9, 2009 10:01:35 PM)
There he went

wolflady (Nov 9, 2009 10:01:35 PM)
good night Steve, have a great week tc

paper (Nov 9, 2009 10:01:43 PM)
barium ewwwwwwww

froglady (Nov 9, 2009 10:02:17 PM)
Hmmm I don't remember having barium for mine

paper (Nov 9, 2009 10:02:18 PM)
and the whole having to go to a hospital with the whole h1n1

froglady (Nov 9, 2009 10:02:23 PM)
But makes sense

paper (Nov 9, 2009 10:02:43 PM)
flying about in the air yuck germa

paper (Nov 9, 2009 10:02:46 PM)
germs

Ole Barn (Nov 9, 2009 10:03:02 PM)
Beck, the recline feature is cool too, I stay in my chair at the dentists office in that feature comes in quite handy

froglady (Nov 9, 2009 10:03:04 PM)
I can't get the h1n1 here yet because I am not in the age group that is the most vulnerable

beckdildal (Nov 9, 2009 10:03:07 PM)
paper, swollow test is not so bad

beckdildal (Nov 9, 2009 10:03:32 PM)
alot better than a muscle biopsy or emg,,lol

paper (Nov 9, 2009 10:03:34 PM)
i hope not all i can think of is choking and hurling

beckdildal (Nov 9, 2009 10:04:02 PM)
how about your chronic conditions froglady?

Ole Barn (Nov 9, 2009 10:04:04 PM)
Froglady, you're a member of a compromise group and should be at the head of the list. I suggest that whoever in your community is establishing their priorities has their head where the sun never shines.

paper (Nov 9, 2009 10:04:21 PM)
lol

froglady (Nov 9, 2009 10:04:30 PM)
I called my doctor and that was what I was told and she knows my condition

Ole Barn (Nov 9, 2009 10:05:03 PM)
She is wrong.

paper (Nov 9, 2009 10:05:04 PM)
that is bs frog you should call the health dept and see what they say

froglady (Nov 9, 2009 10:05:12 PM)
I imagine it will be just a matter of days though. I have not been in contact with anyone lately except my daughter and her husband

wolflady (Nov 9, 2009 10:05:24 PM)
i have a PT assessment tomorrow at 8 am here so i need to sign off good night everyone have a great week to all

paper (Nov 9, 2009 10:05:41 PM)
by wolf

froglady (Nov 9, 2009 10:05:42 PM)
night wolf. Hope you get all better quick

wolflady (Nov 9, 2009 10:05:50 PM)
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Ole Barn (Nov 9, 2009 10:06:21 PM)
I'm going to sign off too because my wife and I have a TV show to watch.

paper (Nov 9, 2009 10:06:29 PM)
my dad went to the next county to get his shot

froglady (Nov 9, 2009 10:06:32 PM)
Good night Barn. Catch you later

paper (Nov 9, 2009 10:06:35 PM)
by barn

Ole Barn (Nov 9, 2009 10:06:38 PM)
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beckdildal (Nov 9, 2009 10:06:39 PM)
i'm going to sign off as well and hope to chat with you all later

froglady (Nov 9, 2009 10:06:49 PM)
goodnight Beck. have a good week

paper (Nov 9, 2009 10:06:49 PM)
ok bybbeck

beckdildal (Nov 9, 2009 10:06:49 PM)
night froglady and paper

beckdildal (Nov 9, 2009 10:06:59 PM)
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paper (Nov 9, 2009 10:06:59 PM)
i am going to go too i guess

froglady (Nov 9, 2009 10:07:16 PM)
Okay, paper, I will say goodnight to you too. Have a wonderful week

paper (Nov 9, 2009 10:07:36 PM)
you too frog call your health dept and get that shot ok

froglady (Nov 9, 2009 10:07:43 PM)
Will do

paper (Nov 9, 2009 10:07:51 PM)
k huggles by

paper (Nov 9, 2009 10:07:53 PM)
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froglady (Nov 9, 2009 10:07:56 PM)
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