Winter Wonderland

[Guest guest]

Here in Vermont we happily got snow instead of the bad ice storm they got to the

east of us and just to the south of us. So, we have our power. Yeah! We do

have a generator but it is difficult switching everything back and forth to the

other outlets.......and it means I can't use the computer nor sleep with the TV

on. I need to have the quiet talking in the background to sleep at night.

Just let the dog in and it is 18 degrees out! Ridiculous.it isn't even

officially winter yet............. Linie.The Owner of the PBCers Org. has

left for a wonderful cruise................ she will be sitting in a lounge

chair cruising about in warmer waters.and eating fine food.....sigh............

But, I think if we have a nice sunny day we shall take advantage of actually

having nice snow and perhaps go snowshoeing. Last winter we never got out ( or

maybe once) as all we had the entire winter was ice. I don't ski anymore so

about the only thing we can do outdoors in winter is walk about the

forest.........and if we have nice snow we snowshoe about. We pack a knapsack

with compass...flashlight, matches, and a foil emergency blanket, whistle and of

course snacks. We always go out prepared for anything. Makes you remember

being a Scout.... ; - ) Our first winter up here we went without a

compass...bad move! We actually got lost in the woods...and that was a bit

scarey........Couldn't see the sun as was so cloudy but we figured out where it

was and headed in the right direction. I was afraid we would be out there all

night in the cold. After that we got a pack.and always keep it ready to grab.

I have been fighting a cold off and on the past few weeks.so far I haven't

gotten sick......just feel like coming down with it. I understand a lot of

people have it..........

What do the rest of you do to keep busy.....hobbys , work full time or part

time? I wish I could work at least part time.would LOVE to have the extra

money! But, I have to settle on just my SSDI check. I keep thinking maybe next

year I can work at least during Christmas. So, again I will say it. " maybe next

year I will be able to work for a month or two. "

Question, Has anyone here been able to talk with Ruth RDELL ???? She isn't

getting the LiverSupport anymore as she kept bouncing.and I get an email back

saying she isn't available " at this time " so that means she still has the same

addy. If so.please post. etc........ Joanne Hope you are

all doing ok.

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[Guest guest]

Thanks Joanne,

What a nice email. It sounds like you are settling into the winter world in

Vermont! We were expecting snow last night here in Western Washington, but

it never came.

The weather forecaster’s have said that there will definitely be arctic

temperatures all week next week down into the teens. We don’t really get

cold cold weather on this side of the mountains very often. In Eastern

Washington it is already full of snow and in the teens. Temps on that side

can get as low as 2 or 3 below zero. Brr..that is where I grew up. A little

lesson on Washington state!

My kids were really looking forward to the snow and so was my husband! He

was up at 6:30am taking the dogs on a walk hoping that it would snow, but it

was just a bunch of wet rain! My children are ages 14 and 10. I am amazed

that I just got out of bed. I love Saturdays to sleep in, but I haven’t

slept in this long in years! I got up at 11:48 a.m.

I am stage 4 PBC and have anemia which has really made me extremely tired

lately. I am no longer working as of July due to the fatigue and extreme

pain that I experience on a daily basis. I just filled out another form from

Social Security that they sent regarding my functional lifestyle. So my

holidays have been filled with worry about money and the dreaded question

about getting on disability or not. I am 43 years old and hate not working.

My doctor, however has told me that I should not work any longer and that

things are only going to get worse for me now that I have cirrhosis. He has

truly seen me do a total 180 when it comes to PBC. When I first started

seeing Dr. Kowdley, I felt great! I had other problems not PBC related, not

all of my health problems are related to the cirrhosis and the problems that

it causes a body. I do have some days where I feel absolutely great. When

those days come I feel so guilty for being home!! Why can’t I just enjoy the

nice day of being pain-free instead of having the guilt feelings that I

should be working? I am currently on LTD with my employer’s insurance

company, but they are encouraging the SSD of course so they won’t have to

pay so much. Many of my friends from work do not quite understand why I

can’t work when I look so good. I just read the Invisible Disabilities

Advocate last night and I need to send that to a few people. The website can

be found on the PBCers org site. It is awesome.

My husband is scared of losing me and he totally understands PBC these days.

He has learned so much since my diagnosis back in 1999. At first he wasn’t

real supportive. I didn’t have a lot of symptoms, but when I did he did NOT

understand. Now, he is totally understanding, comes to every doctors

appointment with me and even wants to make an appointment with Dr. Kowdley

without me there so he may get more information. My 10 year old daughter

wants to know everything, I don’t tell her everything because I don’t want

her to get scared. But I do tell her when I don’t feel good and she wants to

take care of me. She is sweet. My 14 year old son says he understands, but

right now he is so into his friends, computers and sleeping in that I am not

sure what he really thinks. I have tried having conversations with him about

it and we are very close, but some days I think he just blows it off, which

is okay at his age.

About the holidays. We bought a beautiful Norwegian Spruce pine which is

about 7 ½ feet tall. The whole family went and got it together and then we

decorated with white lights, ornaments and candy canes. It looks wonderful.

We got out our Christmas decorations for inside the house, but are not

putting lights up outside this year. Next week I will be working on the

Christmas cards. My husband skis, I never have. I get daily walks with the

dogs during the week. My husband encourages me to get out. – Oh, my husband

just came in the house and said the snow is starting with an occasional

flake and the wind is picking up. He is all smiles.

Everyone have a Merry Christmas!!

Jayne Eastman

Federal Way, WA./DX 1999/Stage 4/ PBC-AIH/Fibromyalgia

[Guest guest]

Jane, What a wonderful post. Nice to read. You have a great doctor

he is well respected! I myself went on disability .I to felt guilty

at first. But, remember you are only receiving your own social

security check early.......You are not collecting welfare....This is

YOUR money. Time to stop feeling guilty. I think it is only because

we tend to LOOK so good.especially with PBC. It is good that your

husband is going to the doctors with you.AND ants to talk with them

p;rivately. That is what my husband did.went to every appointment

and still does when I have my post transplant appointments. You

have great weather there too.a bit too much rain for my liking BUT

you can grow lots of lush plants. What are you taking for your

PBC.ursodiol and what? I took SAMe for the bad fatigue when I got to

stage 3.and it made a big difference. But, when you are so sick

nothing can make you feel good. Just a bit better. If you are

taking the urso you may never need a transplant.......I truly believe

that if they had had urso when I first became ill with PBC I would

never have needed a Tx. So many PBCers are stage 4 and have not

gotten any worse then that and have remained stable that way for

years and years. Yes, you do need to send copies of the

Invisible Disabilities to all your friends and family to help them

learn. We also have a support group for friends and

family .........it is listed in the PBCers Org Index Called Family

and Friends. No PBC or AIHers are there.only friends and familys.

Great help for them. Push for your disability!!! and as for your

kids.Kids are kids. ; - ) Again, thanks for your post Joanne

[Guest guest]

Best wishes, Jayne.

If the SSDI should be denied, you might think about using a for-profit

service such as Alsupp. My daughter went with that, after one turn-down. She

says

she doesn't think she ever could have done it on her own.

Harper

In a message dated 12/14/08 12:02:30 PM, jkeastman@... writes:

> Everyone please send good thoughts my way as I

> am mailing the disability report tomorrow. I hope it is quick, but of course

> I have heard lots of stories.

>

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[Guest guest]

Hi Joanne,

I do take my URSO every night before bedtime, I also take omeprezole for

gastritis. Dr. Kowdley has told me to just stay away from any supplements

now. So when " helpful " people tell me what to try I have to let them know

that I can no longer " try " anything but my current medications. He seemed

pretty positive that I will need a transplant anywhere from 2-15 years from

now due to the nature of the cirrhosis and the pain that I experience. When

I was first diagnosed I was told that the URSO would take care of it and I

would never need a transplant. But now, it looks as if I will need one which

is scary to me, but I am also hopeful that all of these symptoms will go

away once I do get it. Won't that be nice? :-)

Thanks for your kind words. Everyone please send good thoughts my way as I

am mailing the disability report tomorrow. I hope it is quick, but of course

I have heard lots of stories. It did snow last night and it is very cold

here in W. Washington. We are located about 4 miles from the Sound and about

16 miles South of Seattle. Tacoma is just right down the road from our

house.

Jayne Eastman

Federal Way, WA./DX 1999/Stage 4/ PBC-AIH/Fibromyalgia