FSHD Chat

froglady (Nov 16, 2009 8:43:22 PM)
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wolflady (Nov 16, 2009 8:45:00 PM)
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froglady (Nov 16, 2009 8:45:38 PM)
Hello there. How are you tonight?

wolflady (Nov 16, 2009 8:45:47 PM)
Hi Froglady How are you this evening?

wolflady (Nov 16, 2009 8:45:54 PM)
I'm doing

gypsy (Nov 16, 2009 8:45:57 PM)
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froglady (Nov 16, 2009 8:46:04 PM)
Hello there gypsy girl

wolflady (Nov 16, 2009 8:46:09 PM)
Hi gypsy

froglady (Nov 16, 2009 8:46:10 PM)
I am doing pretty good tonight

wolflady (Nov 16, 2009 8:46:30 PM)
Hows everything in Aussieland

froglady (Nov 16, 2009 8:46:58 PM)
Brit isn't going to make it tonight. He is a bit under the weather

wolflady (Nov 16, 2009 8:47:17 PM)
oh no, sure hope its not the flu

gypsy (Nov 16, 2009 8:47:22 PM)
hi froglady and wolflady

froglady (Nov 16, 2009 8:47:29 PM)
No, Wolf, i don't think it is

gypsy (Nov 16, 2009 8:47:50 PM)
don't really know wolflady been so hot think everyone is about melted :(

gypsy (Nov 16, 2009 8:48:06 PM)
sorry to hear brit isn't well

froglady (Nov 16, 2009 8:48:11 PM)
We are really beginning to cool down here now. Perfect weather

froglady (Nov 16, 2009 8:48:28 PM)
We sure could use some rain though

wolflady (Nov 16, 2009 8:48:44 PM)
i have a polkadot stomach,,,think i need to get a marker and play "connect the dots" :-)

wolflady (Nov 16, 2009 8:48:56 PM)
say gypsy, send me your heat

froglady (Nov 16, 2009 8:49:05 PM)
I can only imagine Wolf. How is the shoulder doing?

gypsy (Nov 16, 2009 8:49:07 PM)
how is your arm wolflady

gypsy (Nov 16, 2009 8:49:19 PM)
you are most welcome to it wolflady

wolflady (Nov 16, 2009 8:49:23 PM)
the same as it was

gypsy (Nov 16, 2009 8:49:37 PM)
i really don't know how i am going to surivie summer

wolflady (Nov 16, 2009 8:49:40 PM)
i go see my doctor tomorrow

gypsy (Nov 16, 2009 8:49:52 PM)
thinki might have too see if i can get a new cooler

wolflady (Nov 16, 2009 8:49:55 PM)
i dread winter

froglady (Nov 16, 2009 8:49:58 PM)
Good, maybe he can do something to relieve the pain

gypsy (Nov 16, 2009 8:50:07 PM)
haven't you been yet wolflady ?

froglady (Nov 16, 2009 8:50:18 PM)
Gypsy, do you have a swamp cooler?

gypsy (Nov 16, 2009 8:50:33 PM)
no

wolflady (Nov 16, 2009 8:50:38 PM)
i have extra strength tynelo for pain but doesn't help much

gypsy (Nov 16, 2009 8:50:42 PM)
i don't think anyone uses them here

gypsy (Nov 16, 2009 8:50:57 PM)
is your arm still swollen wolflady ?

froglady (Nov 16, 2009 8:51:14 PM)
Gypsy, most folks here uses AC, but lots of folks still use swamp coolers and some have both

wolflady (Nov 16, 2009 8:51:45 PM)
yes gypsy, i did go 2 weeks ago and spent 4 days at the university 0of minnesopta, just for them to tell me they won't help me

wolflady (Nov 16, 2009 8:52:07 PM)
yes gypsy it is still swollen

gypsy (Nov 16, 2009 8:52:21 PM)
i had a/c it broke thought i wasn't worth repalcing have spent more stuffing aound than i would have replacing it

gypsy (Nov 16, 2009 8:54:33 PM)
that's terrible wolflady couldn't anyone see you sooner :(

wolflady (Nov 16, 2009 8:55:06 PM)
my sister came earlier and rewrapped it for me but after a hour the wrap was so tight my fingernails were turning blue so i took it off

gypsy (Nov 16, 2009 8:55:55 PM)
does evevating it help wolflady

froglady (Nov 16, 2009 8:55:58 PM)
I am still having a problem getting used to my bi-pap machine. Getting used to something new is not an easy thing to do

gypsy (Nov 16, 2009 8:56:22 PM)
you have bi pap now i have heard they take a long time to get used to

wolflady (Nov 16, 2009 8:56:30 PM)
gypsy, i found out that i have a blood clot in my arm pit and 2 1/2 inches of the vein is completely blocked

gypsy (Nov 16, 2009 8:56:48 PM)
oh dear wolflady what can be done about that

froglady (Nov 16, 2009 8:57:05 PM)
Yes, Gypsy. My oxygen level went too low at night so the doctor prescribed it for me

wolflady (Nov 16, 2009 8:57:23 PM)
its hard to keep it elevated, its my right arm and im right habnded

froglady (Nov 16, 2009 8:57:48 PM)
Wolf, that is certainly scary to say the least

wolflady (Nov 16, 2009 8:58:08 PM)
my doctor told me 2 weeks ago, he thought surgery, but the U of MN won't do it

froglady (Nov 16, 2009 8:58:22 PM)
Wolf, did they think it was too risky?

gypsy (Nov 16, 2009 8:58:45 PM)
seems a lot of peolpe are needing oxygen

wolflady (Nov 16, 2009 8:58:49 PM)
i'm going to ask toimorrow if i can go to the Mayo Clinic

froglady (Nov 16, 2009 8:58:58 PM)
Good idea Wolf

froglady (Nov 16, 2009 8:59:22 PM)
Especially people with neuromuscular problems Gypsy

wolflady (Nov 16, 2009 8:59:32 PM)
Froglady, they didn't give me a reason why not at the U of MN , they just said no

froglady (Nov 16, 2009 8:59:53 PM)
How far are you from Mayo, Wolf?

gypsy (Nov 16, 2009 9:00:02 PM)
that's bad wolflady you need to know why

wolflady (Nov 16, 2009 9:00:04 PM)
3 1/2 hours one way

froglady (Nov 16, 2009 9:00:27 PM)
Wolf, did you say you are going to the MDA clinic soon?

wolflady (Nov 16, 2009 9:01:12 PM)
no, but i did call my MD Doctor , he is out of state visiting his dad in Seattle until tomorrow

froglady (Nov 16, 2009 9:01:43 PM)
I would hope he could give you some good advice. Has anyone suggested physical therapy

wolflady (Nov 16, 2009 9:02:10 PM)
they said as long as there is a blood clot they can't do PT

gypsy (Nov 16, 2009 9:02:43 PM)
are you on blood thinners ?

froglady (Nov 16, 2009 9:02:51 PM)
Ic. you were doing PT when the problem started, weren't you?

wolflady (Nov 16, 2009 9:02:52 PM)
THEY HAVE TO GET RID OF THE BLOOD CLOT BEFORE I CAN EXERCISE THAT ARM

gypsy (Nov 16, 2009 9:02:54 PM)
are they doing anything to treat you

froglady (Nov 16, 2009 9:03:03 PM)
That makes sense Wolf

wolflady (Nov 16, 2009 9:03:07 PM)
oops hit caps lock, sorry

froglady (Nov 16, 2009 9:03:29 PM)
Wolf, are they telling you not to use that arm at all?

wolflady (Nov 16, 2009 9:03:38 PM)
no, the PT had been stopped for 2 months before

gypsy (Nov 16, 2009 9:03:58 PM)
so you can't do anything not even things not using the arm

wolflady (Nov 16, 2009 9:04:15 PM)
yes, gypsy i was on blood thinner injections in the stomach for 7 days until i see my doctor

gypsy (Nov 16, 2009 9:04:41 PM)
i hope he can help

wolflady (Nov 16, 2009 9:04:57 PM)
i hav to use my arm, i need to eat, get dress, shower, ect. no such thing as not use it

wolflady (Nov 16, 2009 9:05:55 PM)
the more i use it though, the more it bothers me, then i don't even have any grip left in my hand

wolflady (Nov 16, 2009 9:06:51 PM)
i'm suppose to keep it wrapped but then i can't even eat more than a few bites

froglady (Nov 16, 2009 9:07:03 PM)
Wolf, did you say you had someone coming in to help you with housework?

wolflady (Nov 16, 2009 9:07:06 PM)
it bites :-)

wolflady (Nov 16, 2009 9:07:38 PM)
only 3 days a week for 2 hours per day

froglady (Nov 16, 2009 9:07:52 PM)
One would think you should not be alone

wolflady (Nov 16, 2009 9:08:26 PM)
i'm fine, just totally frustrated

gypsy (Nov 16, 2009 9:08:28 PM)
that should be enough for the work but what about the rest of the time you need to eat

froglady (Nov 16, 2009 9:08:33 PM)
You have to be Wolf

gypsy (Nov 16, 2009 9:08:51 PM)
do you get person care there help with showering and dressing and eating ?

wolflady (Nov 16, 2009 9:09:10 PM)
nope, i usually do that myself

froglady (Nov 16, 2009 9:09:29 PM)
It is amazing what we can do when we have to

gypsy (Nov 16, 2009 9:09:39 PM)
you are amazing i would't be fine with it

froglady (Nov 16, 2009 9:09:54 PM)
My husband finished radiation last Friday and that is a blessing

gypsy (Nov 16, 2009 9:10:10 PM)
good froglady

froglady (Nov 16, 2009 9:10:31 PM)
He made 38 trips in for the radiation

gypsy (Nov 16, 2009 9:10:41 PM)
wow that is a lot

froglady (Nov 16, 2009 9:10:48 PM)
60 miles a day

gypsy (Nov 16, 2009 9:10:56 PM)
it must have been every hard for him

froglady (Nov 16, 2009 9:11:15 PM)
I still can't believe he made it, but he was tougher than I thought

gypsy (Nov 16, 2009 9:12:02 PM)
some peolpe are so strong i wish i was i an a crumbling mess

wolflady (Nov 16, 2009 9:12:31 PM)
it was funny this week, a different PT came to the house, he looked over my house to see what needed to be changed to make it safer, everything he came up with was a joke, he tried telling me i had to find a different way of getting off my bed, the toilet, out of the shower ect, because he didn't like the way i've been doing it for 2 plus years

froglady (Nov 16, 2009 9:12:36 PM)
Gypsy, to be honest with you, we all feel that way at times

gypsy (Nov 16, 2009 9:12:53 PM)
i aready can't cope with this

gypsy (Nov 16, 2009 9:13:19 PM)
they have no idea wolflady its so silly

gypsy (Nov 16, 2009 9:13:36 PM)
they would have a fit if they came here

froglady (Nov 16, 2009 9:13:41 PM)
What people don't realize is that we have our own special way of doing things even when other people think we should do it differently

wolflady (Nov 16, 2009 9:14:03 PM)
when i tried telling him, his way won't work for me because i don't follow the book and rules they are taught for everyonre

froglady (Nov 16, 2009 9:14:27 PM)
People will try to help when I am in a doctor's office and they simply don't have a clue how to help. We are just different in the way we need help

wolflady (Nov 16, 2009 9:14:36 PM)
exactly

gypsy (Nov 16, 2009 9:14:38 PM)
i am so set in my ways just really worried what is going to happen when i can't get up my myself as i do most things sitting or lieing

froglady (Nov 16, 2009 9:16:26 PM)
I think we all worry about what the future holds for us.

froglady (Nov 16, 2009 9:16:48 PM)
We just take it day at a time and do the best we can for that day I think

wolflady (Nov 16, 2009 9:17:04 PM)
i've been told to get the bigger, fatter spoons, forks, knives for eating. they don't work when you can't bend your fingrs around them, they just don't get it

gypsy (Nov 16, 2009 9:17:06 PM)
i am really terrifed now i see no furture as there is so much i can't do :(

gypsy (Nov 16, 2009 9:17:36 PM)
they keep offering them to me wolfady and i have little trouble with my hands it's my arms that don't work

gypsy (Nov 16, 2009 9:17:58 PM)
really i get so frsutrated peolpe say get help and the peolpe that are suppost to help have no idea

wolflady (Nov 16, 2009 9:18:26 PM)
in fact, i don't use spoons at all, i end up spill all over the front of my shirt because my wrist are to weak

gypsy (Nov 16, 2009 9:18:48 PM)
that is intersing wolflady all i use is spoons have done for a few years now

froglady (Nov 16, 2009 9:19:01 PM)
Oh my Wolf. I didn't realize you were that weak in your hands

gypsy (Nov 16, 2009 9:19:21 PM)
i can only eat by lifing my face to the food not the arm ot the face

wolflady (Nov 16, 2009 9:19:36 PM)
oh yes, froglady, there are days i can't even use an ink pen

gypsy (Nov 16, 2009 9:20:01 PM)
wolflady that is bad is the both arms or just the sore one

froglady (Nov 16, 2009 9:20:06 PM)
You do very well Wolf I must say

gypsy (Nov 16, 2009 9:20:43 PM)
yes i struggle to manage and seems you are much worse off :(

wolflady (Nov 16, 2009 9:20:51 PM)
just my right arm, gypsy, my left arm is very weak, i can't use it for hardly anything any more

froglady (Nov 16, 2009 9:21:27 PM)
I still cook and wash dishes so I must be doing pretty good

wolflady (Nov 16, 2009 9:22:35 PM)
i do dishes but my arms are resting on the counter top to do them,,,,, cooking i can do some but not with kttles like boiling poptatoes, ect.

gypsy (Nov 16, 2009 9:22:35 PM)
froglady you are amazing i would have given up long ago and got some one else to do it for me

froglady (Nov 16, 2009 9:22:51 PM)
I am going to have to take a quick break. brb

wolflady (Nov 16, 2009 9:22:55 PM)
ok

gypsy (Nov 16, 2009 9:23:32 PM)
wolflady seems you are having the same problesm as me in no one is any help in finding ways that you can better support your arms to do things

wolflady (Nov 16, 2009 9:23:51 PM)
i started using alot of paper plates just to avoid doing dishes because it get tiresome for my arms lol

gypsy (Nov 16, 2009 9:24:11 PM)
i would love to do that but i feel to guilty

wolflady (Nov 16, 2009 9:24:28 PM)
paper plates and microwave is my life lol

gypsy (Nov 16, 2009 9:24:51 PM)
what about meals on wheels

gypsy (Nov 16, 2009 9:25:21 PM)
though if they are anything like here they arn't very nutrisious

wolflady (Nov 16, 2009 9:25:44 PM)
um nope, my dad got them, they aren't the most tasty things i've eaten

gypsy (Nov 16, 2009 9:26:29 PM)
i know it's appaling they can serve stuff like that up

wolflady (Nov 16, 2009 9:26:34 PM)
they don't use any salt or seasonings in the food, very bland tasting

gypsy (Nov 16, 2009 9:26:39 PM)
i seems to be living on packet pasta

gypsy (Nov 16, 2009 9:27:00 PM)
wow wish ours didn't full of pepper and garlic:(

gypsy (Nov 16, 2009 9:27:07 PM)
it's easy to add salt

gypsy (Nov 16, 2009 9:27:30 PM)
i had to throw most on them out

wolflady (Nov 16, 2009 9:28:02 PM)
my home health aide helps me cook up food on frudays when she is here, i've been eating hamberger hotdish for 4 days now, still have 2 meals of it left

gypsy (Nov 16, 2009 9:28:19 PM)
that's good she is able to do that

gypsy (Nov 16, 2009 9:28:38 PM)
casseroles and stuff that you could freeze would be good

wolflady (Nov 16, 2009 9:28:47 PM)
she helps with baking too

gypsy (Nov 16, 2009 9:28:53 PM)
i was suppost to come and have some one do that like most things it didn't work out

gypsy (Nov 16, 2009 9:29:04 PM)
what baking do you do

wolflady (Nov 16, 2009 9:30:11 PM)
i used to do lots of cookies, but now it is just caks, and brownies, we don't have enough time to do cookies like i used to,,,,,20 dozen at a time

froglady (Nov 16, 2009 9:30:34 PM)
Im back

wolflady (Nov 16, 2009 9:30:50 PM)
now its just cakes, bars, brownies

gypsy (Nov 16, 2009 9:30:51 PM)
wb froglady

wolflady (Nov 16, 2009 9:30:55 PM)
wb

froglady (Nov 16, 2009 9:31:04 PM)
Speaking of sweets, have you guys ever tried chocolate truffles? I had not until this week and are they ever good

gypsy (Nov 16, 2009 9:31:15 PM)
wow that is a lot do you eat them or is it for something

wolflady (Nov 16, 2009 9:31:18 PM)
i love them

gypsy (Nov 16, 2009 9:31:27 PM)
never had any sort of truffles

froglady (Nov 16, 2009 9:31:44 PM)
Well, now I can say I have, but they are very expensive

wolflady (Nov 16, 2009 9:31:46 PM)
um i confess, i eat them

gypsy (Nov 16, 2009 9:32:06 PM)
why not if you like them wolflady :)

froglady (Nov 16, 2009 9:32:08 PM)
There are some things that I have never eaten that I would love to try. like duck

wolflady (Nov 16, 2009 9:32:09 PM)
i'm terrible wghen it comes to homemade sweets

gypsy (Nov 16, 2009 9:32:37 PM)
i don't really eat stuff like that but i do eat way way to much chocolte like a big block a day :(

wolflady (Nov 16, 2009 9:32:38 PM)
duck is good, froglady

froglady (Nov 16, 2009 9:32:47 PM)
I hear that it is.

wolflady (Nov 16, 2009 9:32:52 PM)
we had duck a lot when i was young

froglady (Nov 16, 2009 9:32:54 PM)
I have tried frog legs though

gypsy (Nov 16, 2009 9:32:54 PM)
i don't think i like duck

gypsy (Nov 16, 2009 9:33:03 PM)
you can have alpaca here

gypsy (Nov 16, 2009 9:33:10 PM)
i haven't tried it

gypsy (Nov 16, 2009 9:33:21 PM)
and kangaroo in south australia

froglady (Nov 16, 2009 9:33:39 PM)
I would try anything once. I have even eaten rattle snake meat

wolflady (Nov 16, 2009 9:33:41 PM)
we grew up having duck for thanksgiving and goose for christmas dinner

froglady (Nov 16, 2009 9:33:53 PM)
Were they wild Wolf?

wolflady (Nov 16, 2009 9:34:03 PM)
no, farm raised

froglady (Nov 16, 2009 9:34:04 PM)
I never had a goose either

wolflady (Nov 16, 2009 9:34:20 PM)
i grew up on a small small farm

froglady (Nov 16, 2009 9:34:24 PM)
Ic

froglady (Nov 16, 2009 9:34:37 PM)
Gypsy, isn't an alpaca like a little deer?

froglady (Nov 16, 2009 9:35:12 PM)
Have you all eaten Javalina?

wolflady (Nov 16, 2009 9:35:28 PM)
what is that, froglady?

froglady (Nov 16, 2009 9:35:30 PM)
We have lots of those around here, but I don't like to eat them

gypsy (Nov 16, 2009 9:35:49 PM)
to taste i don't know i haven't had either

froglady (Nov 16, 2009 9:35:51 PM)
They are sorta like a pig, but i understand they are not of the pig family

wolflady (Nov 16, 2009 9:36:00 PM)
oh

gypsy (Nov 16, 2009 9:36:09 PM)
never heard of them froglady

froglady (Nov 16, 2009 9:36:15 PM)
Check them out on google, Wolf. They are cute

froglady (Nov 16, 2009 9:36:44 PM)
We have lots of Gambel quail here too. Lots of folks eat them, but we just like to watch them

wolflady (Nov 16, 2009 9:37:04 PM)
i've eaten lots of things like venison, elk, rattle snake, bear, even pigeon

wolflady (Nov 16, 2009 9:37:15 PM)
and woodchuck

gypsy (Nov 16, 2009 9:37:17 PM)
i heard quail is full of bones wouldn't try that

froglady (Nov 16, 2009 9:37:23 PM)
I haven't eaten bear or pigeon yet

wolflady (Nov 16, 2009 9:37:29 PM)
rabbit, squirrel

gypsy (Nov 16, 2009 9:37:35 PM)
i haven't eating much at all my sister has tried a few things

froglady (Nov 16, 2009 9:37:37 PM)
Yep, have eaten those

gypsy (Nov 16, 2009 9:37:46 PM)
rabbit dad used to catch those

froglady (Nov 16, 2009 9:37:58 PM)
My yard is a haven for rabbits.

wolflady (Nov 16, 2009 9:38:13 PM)
i like "wild" ame

wolflady (Nov 16, 2009 9:38:19 PM)
game

gypsy (Nov 16, 2009 9:38:50 PM)
i have a rabbit here too see it every coulpe of days

froglady (Nov 16, 2009 9:38:54 PM)
I like to watch all the critters that visit us here

wolflady (Nov 16, 2009 9:38:58 PM)
sorry, my arm is getting sore so i switched to my left hand, can't type as good

froglady (Nov 16, 2009 9:39:09 PM)
That's okay wolf

froglady (Nov 16, 2009 9:39:48 PM)
We have such sparce growth here you wouldn't think we would have many animals, but we do

froglady (Nov 16, 2009 9:40:00 PM)
Lots of coyotes

jomazu (Nov 16, 2009 9:40:17 PM)
(This user has entered FSHD Chat)

wolflady (Nov 16, 2009 9:40:30 PM)
i saw a pleated woodpecker yesterday, that was so neat, don't see them very often here

froglady (Nov 16, 2009 9:40:31 PM)
There is that Jo. Welcome my dear sister

wolflady (Nov 16, 2009 9:40:37 PM)
hi Jo

gypsy (Nov 16, 2009 9:40:38 PM)
hi jomaza

jomazu (Nov 16, 2009 9:40:43 PM)
Hello all.

gypsy (Nov 16, 2009 9:40:44 PM)
is that you jo :)

wolflady (Nov 16, 2009 9:40:52 PM)
how have you been?

froglady (Nov 16, 2009 9:40:53 PM)
Oh wow, Wolf, I have to tell my hubby about that. He would love to have seen it

jomazu (Nov 16, 2009 9:40:54 PM)
That's me gypsy. lol

gypsy (Nov 16, 2009 9:41:08 PM)
hi long time how are you ?

jomazu (Nov 16, 2009 9:41:09 PM)
I am doing great. Staying busy.

wolflady (Nov 16, 2009 9:41:38 PM)
are you all settled in and adjusted to Cali?

jomazu (Nov 16, 2009 9:41:46 PM)
How are all of you?

gypsy (Nov 16, 2009 9:42:09 PM)
struggling a bit getting pretty frustrated at what i can't do

wolflady (Nov 16, 2009 9:42:13 PM)
i'm doing

wolflady (Nov 16, 2009 9:42:45 PM)
okay, but dealing with a blood clot and blocked vein

froglady (Nov 16, 2009 9:42:49 PM)
That is funny Wolf, saying "I'm doing." I used to tell my kids that when they would ask me what I was doing

wolflady (Nov 16, 2009 9:43:03 PM)
lol froggy

jomazu (Nov 16, 2009 9:43:05 PM)
I am pretty well settled in. I would totally love it if only froglady and hubby were here. lol

froglady (Nov 16, 2009 9:43:34 PM)
Is it raining up there today Jo?

jomazu (Nov 16, 2009 9:43:49 PM)
That is why it is so good to chat with people with like problems Gypsy. We can all relate so well.

froglady (Nov 16, 2009 9:44:01 PM)
Do you know it is down to about 56 right now. Was about 75 during the day

jomazu (Nov 16, 2009 9:44:02 PM)
No. We had a beautiful day.

gypsy (Nov 16, 2009 9:44:31 PM)
that sounds ok to me froglady

wolflady (Nov 16, 2009 9:44:36 PM)
56, thats warmer than our high was today, we made it to 48

gypsy (Nov 16, 2009 9:44:43 PM)
a little warm even

jomazu (Nov 16, 2009 9:44:47 PM)
I keep expecting it to start raining and not quit for a while, but it has rained for a while then gives us a few good days between. I can handle that.

wolflady (Nov 16, 2009 9:44:50 PM)
down to 21 overnight

froglady (Nov 16, 2009 9:44:53 PM)
I'll bet Gypsy. I know what it is like to be in hot weather like you are in now

gypsy (Nov 16, 2009 9:45:04 PM)
could be 100 here on thurday :(

gypsy (Nov 16, 2009 9:45:17 PM)
or worse

jomazu (Nov 16, 2009 9:45:17 PM)
Oh it is your summer Gypsy?

froglady (Nov 16, 2009 9:45:28 PM)
Thank the Lord, Wolf, we just don't get that cold

gypsy (Nov 16, 2009 9:45:29 PM)
yes:(summer

wolflady (Nov 16, 2009 9:45:33 PM)
hm, i might just have to hop on an airplane, gypsy :-)

gypsy (Nov 16, 2009 9:45:50 PM)
you are welocme wolfday

froglady (Nov 16, 2009 9:45:51 PM)
You can't do that Wolf. Remember the bloodclot.

gypsy (Nov 16, 2009 9:46:03 PM)
oops froglady is right :(

wolflady (Nov 16, 2009 9:46:19 PM)
oh you had to remind me, didn't you, froggy just joking

froglady (Nov 16, 2009 9:46:28 PM)
LOL Sorry about that

froglady (Nov 16, 2009 9:46:46 PM)
Jo, Wolf is having a bunch of problems with blood clots

jomazu (Nov 16, 2009 9:46:50 PM)
I wasn't sure what time you all came on. We have daylight saving time here. I am having to get used to that again.

jomazu (Nov 16, 2009 9:47:21 PM)
Sorry about the blood clot problem wolflady. I had those a few years ago and that is no fun. Are you wearing support stockings?

froglady (Nov 16, 2009 9:47:44 PM)
Jo, you would come on at 7 p.m.

wolflady (Nov 16, 2009 9:47:56 PM)
it's in my right arm pit, jo and 2 1/2 inches of the vein is blocked

jomazu (Nov 16, 2009 9:48:45 PM)
Oh that is scary wolflady.

froglady (Nov 16, 2009 9:48:46 PM)
What is happening in CA tonight?

jomazu (Nov 16, 2009 9:49:37 PM)
Not much of anything that I am aware of. I am so protected here where I live, especially since Pat fixed my chain on my front door and Hassel put a broom stick in my sliding patio door. lol

wolflady (Nov 16, 2009 9:49:49 PM)
they think the rib bone and collar bone compressed the vein until it blocked up and then a clot formed

froglady (Nov 16, 2009 9:49:58 PM)
You probably feel much better with those installations Jo

jomazu (Nov 16, 2009 9:50:23 PM)
What type of MD do you have, Wolflady?

wolflady (Nov 16, 2009 9:50:29 PM)
FSH

jomazu (Nov 16, 2009 9:50:31 PM)
Yes froglady. Much more.

jomazu (Nov 16, 2009 9:50:43 PM)
Oh, the same as froglady and me.

froglady (Nov 16, 2009 9:51:13 PM)
Jo, Gypsy has LGMD

froglady (Nov 16, 2009 9:51:27 PM)
That is similar to FSH I think

jomazu (Nov 16, 2009 9:51:37 PM)
Will we have to watch that froglady? I am talking about what happened to Wolflady?

froglady (Nov 16, 2009 9:51:37 PM)
At least we all have the same issues

wolflady (Nov 16, 2009 9:52:01 PM)
they call it chronic vein thrombosis and my doctor said he found only 75 known cases nationwide, i said well i'm number 76 :-)

froglady (Nov 16, 2009 9:52:19 PM)
I don't know Jo

gypsy (Nov 16, 2009 9:52:21 PM)
yes i am finding my arms much weaker which seems more comon in fsh

jomazu (Nov 16, 2009 9:52:25 PM)
Gypsy, are you weak in your upper body like Froglady and me?

froglady (Nov 16, 2009 9:52:36 PM)
That is right gypsy

gypsy (Nov 16, 2009 9:52:47 PM)
i am getting very weak in m,y upper body it getting very bad now

gypsy (Nov 16, 2009 9:53:08 PM)
i can't do much at all now not even knit

gypsy (Nov 16, 2009 9:53:13 PM)
struggle to feed myself

jomazu (Nov 16, 2009 9:53:24 PM)
Wolflady, are they putting you in some kind of brace or other something to hold your arms out?

froglady (Nov 16, 2009 9:53:52 PM)
Gypsy, did they do some kind of test to determine for sure you had LGMD?

gypsy (Nov 16, 2009 9:54:09 PM)
my sister had a dna one she has it so i guess i do too

jomazu (Nov 16, 2009 9:54:27 PM)
Gypsy, I have the same problem. I use the arms of my chair for lots of things to help with my arms. The other day the Grandson lent me a keyboard and I put it on the arms of my recliner and can play it a little bit.

froglady (Nov 16, 2009 9:54:29 PM)
You probably do then

gypsy (Nov 16, 2009 9:55:12 PM)
eating and showering are becoming the bigeest issues

gypsy (Nov 16, 2009 9:55:26 PM)
can't do my hair

froglady (Nov 16, 2009 9:55:27 PM)
Showering is becoming a big issue with me too

wolflady (Nov 16, 2009 9:55:30 PM)
no, i had my arm wrapped from the shoulder to my wrist in an ace bandage, but then the swelling gets so bad it gets tight and my fingernails and hand turns purple, so i took it off

jomazu (Nov 16, 2009 9:55:31 PM)
Do you have a shower bench, Gypsy?

gypsy (Nov 16, 2009 9:55:55 PM)
no jo i i tried a chair i can't get up but it's washing myself that is the problem

gypsy (Nov 16, 2009 9:56:22 PM)
i have no control of my arms back towards my body

wolflady (Nov 16, 2009 9:56:23 PM)
i wash my hair in the kitchen sink, gypsy

froglady (Nov 16, 2009 9:56:25 PM)
Gypsy, I have a bar in my bathtub. I rest my arms on it to wash myself

gypsy (Nov 16, 2009 9:56:35 PM)
that was years a go wolfday i can't even manage that now

froglady (Nov 16, 2009 9:57:06 PM)
Jo, you use the kitchen sink too, do you not?

gypsy (Nov 16, 2009 9:57:15 PM)
i have to lie on the bed to wash

froglady (Nov 16, 2009 9:57:19 PM)
I haven't tried that, but I think I will

wolflady (Nov 16, 2009 9:57:30 PM)
i'm starting to have trouble now to, gypsy so i have my home health aide help me with my hair

jomazu (Nov 16, 2009 9:57:31 PM)
Many years ago, but not in recent years. I wash my hair when I get my shower.

jomazu (Nov 16, 2009 9:57:47 PM)
do you have a home health care giver, gypsy?

froglady (Nov 16, 2009 9:57:50 PM)
That is how I wash my hair too Jo

gypsy (Nov 16, 2009 9:57:54 PM)
i am fortunatle i an able to get my hair washed at a place in town now only get done once a week and sometimes not even that

gypsy (Nov 16, 2009 9:58:02 PM)
i don't no jo

froglady (Nov 16, 2009 9:58:09 PM)
That is great you can do that gypsy

froglady (Nov 16, 2009 9:58:43 PM)
It hurts my neck too bad now to lay it down on those washbasins at the beauty shops

gypsy (Nov 16, 2009 9:58:43 PM)
i am pretty sure i don't have the arm strengh to do any of what you two do

jomazu (Nov 16, 2009 9:58:49 PM)
I don't let the beauty shop wash my hair because when I lay my head in the sink it cuts off my breathing.

gypsy (Nov 16, 2009 9:59:04 PM)
wow the place ihave has agreat set up i find it good froglady

froglady (Nov 16, 2009 9:59:31 PM)
I think if I ever go again to a beauty shop I will ask them to roll up a towel and put it under my head

jomazu (Nov 16, 2009 9:59:32 PM)
I have to be careful about leaning forward because of the tendency to get bleeds in my eyes.

gypsy (Nov 16, 2009 9:59:35 PM)
i can still reach clothes line but nothing back twards me

gypsy (Nov 16, 2009 9:59:49 PM)
this palce i go is lie back

wolflady (Nov 16, 2009 9:59:50 PM)
when i go to the beaty salon, she puts a towel down under my neck, froggy, it helps a lot

froglady (Nov 16, 2009 10:00:20 PM)
jo, I found that article in FSH Society brochure about Dr. Tawil going to do research on eye issues relating to FSH. Do you want it?

jomazu (Nov 16, 2009 10:00:21 PM)
They have to help me rise up from the water basin because my neck is so weak.

froglady (Nov 16, 2009 10:01:06 PM)
That is great that you have tried that Wolf. I will definitely ask them to do that for me

jomazu (Nov 16, 2009 10:01:10 PM)
No Froglady, I have it. I have been going to get in touch with him. I don't want them to do a biopsy however. I would be more than willing to release my medical records for their use.

wolflady (Nov 16, 2009 10:01:16 PM)
me too, jo,,my back is bad, i can't sit up unless i am able to roll to th side first

froglady (Nov 16, 2009 10:01:36 PM)
That is the way I am too Wolf

jomazu (Nov 16, 2009 10:01:37 PM)
Same here Wolflady'

gypsy (Nov 16, 2009 10:01:54 PM)
how do you get around to your side ?

jomazu (Nov 16, 2009 10:02:12 PM)
I just have a twin bed and I am sure some morning I am going to be out on the floor trying to get up. lol

froglady (Nov 16, 2009 10:02:24 PM)
I turn on my side and sorta roll to a sitting position

froglady (Nov 16, 2009 10:02:50 PM)
I hang on to the head of my bed while I am doing this

wolflady (Nov 16, 2009 10:03:06 PM)
i have a quen size bed, much more room if the cat moves first :-)

jomazu (Nov 16, 2009 10:03:07 PM)
I drag my legs up to a bent position with my hands then hold on to a shelf by my bed and pull myself up.

gypsy (Nov 16, 2009 10:03:08 PM)
that would be a worry jo i would be scared of that happing in a small bed too

gypsy (Nov 16, 2009 10:03:17 PM)
yes wolf me too and same about that cat

froglady (Nov 16, 2009 10:03:35 PM)
LOL No cats here and I sleep in a hospital bed

wolflady (Nov 16, 2009 10:03:47 PM)
:-) gypsy, gotta love them

gypsy (Nov 16, 2009 10:03:49 PM)
they wanted me to get a hopstial bed i wented to keel my queen

gypsy (Nov 16, 2009 10:03:58 PM)
keep

froglady (Nov 16, 2009 10:04:06 PM)
By the way girls, not that you really care, but I won at Fantasy Football again this week. lol

jomazu (Nov 16, 2009 10:04:08 PM)
No cat here either - no husband - just me. lol

wolflady (Nov 16, 2009 10:04:19 PM)
awesome froggy

gypsy (Nov 16, 2009 10:04:20 PM)
welll done froglady :D

jomazu (Nov 16, 2009 10:04:35 PM)
Congratulations Froglady..

froglady (Nov 16, 2009 10:04:39 PM)
Thanks guys

froglady (Nov 16, 2009 10:04:41 PM)
LOL

jomazu (Nov 16, 2009 10:04:48 PM)
Do you get published or what? lol

wolflady (Nov 16, 2009 10:04:57 PM)
it was just me, jo, until this huge cat adopted me 2 1/2 months ago

gypsy (Nov 16, 2009 10:05:02 PM)
if i actully cleaned all the clutter out of here it would be better who do yo manage to keep things where you can reach them

froglady (Nov 16, 2009 10:05:14 PM)
No, nothing like that. I don't think I will even make it to finals this year :(

jomazu (Nov 16, 2009 10:05:49 PM)
Gypsy, when I moved into my apartment I talked the landlady into putting my closet rods down to my arms reach. I have two large closets all for my stuff. It is awesome.

froglady (Nov 16, 2009 10:06:03 PM)
I am blessed in that way Gypsy. My husband is a really tall fellow

froglady (Nov 16, 2009 10:06:37 PM)
Wow, Jo, that is great, especially with as many clothes as you have. lol

jomazu (Nov 16, 2009 10:06:40 PM)
Yeah, he used to help me when I lived next door. boooo

froglady (Nov 16, 2009 10:07:10 PM)
Jo called my husband "Our husband." LOL

jomazu (Nov 16, 2009 10:07:10 PM)
Does Beck still come on the chat?

gypsy (Nov 16, 2009 10:07:21 PM)
that would be handy jo on only wear about two things casue that is all i can reach and the craft sruff is everywhere to

wolflady (Nov 16, 2009 10:07:29 PM)
well, gals, i think my arm is about shot for the night so i'm going to sign off,,,,,,,,,,,you all have a great week, good night

froglady (Nov 16, 2009 10:07:31 PM)
Yes she does. don't know what happened to her tonight and Brit is under the weather

gypsy (Nov 16, 2009 10:07:41 PM)
shame there isn't some where here to post my xmas cards to show you

jomazu (Nov 16, 2009 10:07:43 PM)
Not good.

wolflady (Nov 16, 2009 10:07:44 PM)
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froglady (Nov 16, 2009 10:07:46 PM)
Okay Wolf, Goodnight

gypsy (Nov 16, 2009 10:07:48 PM)
night wolfladyt tc

jomazu (Nov 16, 2009 10:07:57 PM)
Is it time to log off?

froglady (Nov 16, 2009 10:08:10 PM)
We have about four minutes left for the chat

froglady (Nov 16, 2009 10:08:19 PM)
Gypsy, have you tried facebook yet?

froglady (Nov 16, 2009 10:08:32 PM)
You could put your xmas cards there and we could see them

jomazu (Nov 16, 2009 10:08:38 PM)
I saw tonight that MD has a facebook. What do you know about that?

gypsy (Nov 16, 2009 10:09:02 PM)
no i don't have face book

jomazu (Nov 16, 2009 10:09:12 PM)
What about her Christmas cards?

jomazu (Nov 16, 2009 10:09:21 PM)
Is she making some?

froglady (Nov 16, 2009 10:09:23 PM)
MDA has a site called myMDA, which is like facebook, but maybe they are on facebook too. It seems the whole world is

gypsy (Nov 16, 2009 10:09:41 PM)
i can't work that site i joined but don't understand it at all

jomazu (Nov 16, 2009 10:09:42 PM)
Are you enjoying facebook Froglady?

gypsy (Nov 16, 2009 10:10:02 PM)
youhave face book now froglady

froglady (Nov 16, 2009 10:10:10 PM)
A little. I still don't know quite what I am doing. Just like that miserable bi-pap

froglady (Nov 16, 2009 10:10:27 PM)
Yes, Gypsy, I do and so does Beck and Jo

jomazu (Nov 16, 2009 10:10:42 PM)
I will sign off for now. Hope you two have an awesome week. Got to make a phone call.

gypsy (Nov 16, 2009 10:10:50 PM)
night jo tc

froglady (Nov 16, 2009 10:10:53 PM)
Tell Oz hello. lol

jomazu (Nov 16, 2009 10:11:09 PM)
You guessed huh? lol

froglady (Nov 16, 2009 10:11:13 PM)
Gypsy, Jo has a gentleman friend now.

gypsy (Nov 16, 2009 10:11:20 PM)
:)

jomazu (Nov 16, 2009 10:11:33 PM)
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froglady (Nov 16, 2009 10:11:56 PM)
We are happy for Jo about this new development. She seems to be really happy right now

gypsy (Nov 16, 2009 10:12:20 PM)
that's great

gypsy (Nov 16, 2009 10:12:38 PM)
i seem ot be destine to be alone for ever

froglady (Nov 16, 2009 10:13:13 PM)
That is sometimes not a bad thing either. You have only to please yourself.

froglady (Nov 16, 2009 10:13:43 PM)
I am going to sign off for now. Have a good week and hope to see you next week

gypsy (Nov 16, 2009 10:13:50 PM)
yes i don't mind that part but so many things it would be nice to have some one to talk over with

gypsy (Nov 16, 2009 10:13:52 PM)
night tc

froglady (Nov 16, 2009 10:13:56 PM)
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gypsy (Nov 16, 2009 10:14:08 PM)
(This user has left DigiChat)