New to the group

[Guest guest]

Hi, Liz - and Welcome! I have a 19 year old son named Tristan who has Down syndrome. I've also got a 22 year old son, an almost 18 year old son, and a 16 year old daughter.

Your daughter's site sounds AWESOME!Shari

 

Hi,

I am a mom of a daughter with Down syndrome - her name is Sami and she is 19. My other daughter is in college and her friends are starting a site called " Code for Joy " where programmers and designers will be asked to create digital toys for particular kids with particular needs, especially those that are under served by what is currently available online. Their singular aim will be to make kids happy...

They need to find programs and people that can tell them about a child, tell them what he/she likes, what he is capable of doing in terms of interaction - and they will create a challenge out of it....

Sounds like some creative minds looking to make things for our kids so if you have a dream toy in mind or can just describe the strengths, challenges, likes, and dislikes of your child - it would help them get started!

thanks,

liz rein

[Guest guest]

Hello, I am new to the group. My name is . My mother has Hepatitis C,

Cirrhosis of the liver, and is an active Alcoholic. When the doctor told her

about her liver she went to a liver clinic and decided not to do treatments. She

also has a hernia that the doctor was unable to fix because she couldn't stop

drinking in order for her blood to thicken for the surgery. It has been almost 4

years since she was diagnosed with the Cirrhosis. Now she is having several

symptoms: fluid in her feet and legs, stomach is swollen (but not sure if it is

fluid or hernia), confusion (getting lost driving, days mixed up), slurred

speech, unable to control bladder and bowels at times (not all the time),

frequent urination during the night (seems like every half hour), wakes up to

nose bleeding. She is still drinking She does not go to the doctor, her

excuse is that she has no insurance. She tried to get it once but they said her

husband made too much $$. Sadly most of the income goes to beer and cigerettes.

I am about 3 hours away from her but talk to her almost daily. I try to keep up

with her condition so that means calling frequently. I am the only one (me and

my hubby) that knows all of her symptoms. I am not sure when to tell the rest of

the family. I am the one she wants to care for her when the time comes that she

needs it. I pray I know when that time is.

I guess I am writing to see if anyone can help me get an idea of when to step

in. My family is full of strong personalities. That is the nicest way to put it.

My mother's husband is an alcohic and drug attict that is in denial about her

illness. Just last night he told her they are just getting older and everyone

has these problems. My mother is 54 and he is 48. His health is not much better

and has developed sores all over his body that he will not get checked out.

I just feel a bit lost without knowing what to expect next. I am not sure when

to step in and when to tell the rest of the family about all of her symptoms. I

know this is scarring my mom and also embarrasses her at the same time. It is

more real to her now.

I appreciate any info anyone can give me. If there is another group you would

suggest please let me know.

Thank you very much for listening.

[Guest guest]

That is sad about your Mom. I have hep c and when my blood test's started getting very abnormal, I did the whole treatment with a specialist. The specialist told me point blank, if I drink alchohol on a daily basis or even on a moderate basis with this condition, do not expect to live long. That is exactly what he told me so I thought I would share that information with you.

Subject: New to the groupTo: HepatitisCSupportGroupForDummies Date: Monday, August 16, 2010, 9:53 AM

Hello, I am new to the group. My name is . My mother has Hepatitis C, Cirrhosis of the liver, and is an active Alcoholic. When the doctor told her about her liver she went to a liver clinic and decided not to do treatments. She also has a hernia that the doctor was unable to fix because she couldn't stop drinking in order for her blood to thicken for the surgery. It has been almost 4 years since she was diagnosed with the Cirrhosis. Now she is having several symptoms: fluid in her feet and legs, stomach is swollen (but not sure if it is fluid or hernia), confusion (getting lost driving, days mixed up), slurred speech, unable to control bladder and bowels at times (not all the time), frequent urination during the night (seems like every half hour), wakes up to nose bleeding. She is still drinking She does not go to the doctor, her excuse is that she has no insurance. She tried to get it once but they said her husband made too much $$.

Sadly most of the income goes to beer and cigerettes. I am about 3 hours away from her but talk to her almost daily. I try to keep up with her condition so that means calling frequently. I am the only one (me and my hubby) that knows all of her symptoms. I am not sure when to tell the rest of the family. I am the one she wants to care for her when the time comes that she needs it. I pray I know when that time is.I guess I am writing to see if anyone can help me get an idea of when to step in. My family is full of strong personalities. That is the nicest way to put it. My mother's husband is an alcohic and drug attict that is in denial about her illness. Just last night he told her they are just getting older and everyone has these problems. My mother is 54 and he is 48. His health is not much better and has developed sores all over his body that he will not get checked out. I just feel a bit lost without knowing what to expect next. I am not

sure when to step in and when to tell the rest of the family about all of her symptoms. I know this is scarring my mom and also embarrasses her at the same time. It is more real to her now. I appreciate any info anyone can give me. If there is another group you would suggest please let me know.Thank you very much for listening.

[Guest guest]

Thank you, they told her the same thing. Sadly they offered to pay for all her

treatments and she refused. She said she didn't want to stop drinking and eating

salt. I am glad you went through the treatments to get better.

Thanks,

>

> That is sad about your Mom. I have hep c and when my blood test's started

getting very abnormal, I did the whole treatment with a specialist. The

specialist told me point blank, if I drink alchohol on a daily basis or even on

a moderate basis with this condition, do not expect to live long.  That is

exactly what he told me so I thought I would share that information with you.

>

[Guest guest]

Hi Jen,

You couldn’t have

found a better place to help you learn… between us all we have been there

and done that!

I am and I am

also a group moderator. I did tx (treatment) in 2004-05, it wasn’t fun

but I got through it and haven’t had any abnormal liver function tests since,

although I’ve not had a Hepatitis test since.

I wish I could give

you more insight as to why your mom is acting the way she is, but I can’t.

I would guess she is frightened and imitating an ostrich with her head in the

sand.

I can say that my husband

would never take tx either which really pisses me off. I feel like I’d do

anything to help him but he would have to help himself first.

Wonder if tough love

would work on your mom?

I took a quick peek at

your website, Anyone with lots of animals grabs my attention, lol. Are those

Nubian Goats?

What part of the

country do you live in?

I’ve got a lot

of critters too. At last count I have 6 rescue cats (1 is a barn cat), 3 large

rescue dogs, 22 parrots (of which 13 are rescues), 25 llamas, and over a

hundred white homing pigeons… also Fantails and Ringneck Doves. I too

have Polish Chickens, I saw your photo with one of them. Silly things arent

they? I’ve got one that is a dead ringer for Cruella DeVille (Glen Close

with white fuzzy hat) in the Dalmatian movie. Along with my 4 Polish I have about

15 other chickens and they are all pets… along with great egg producers.

I’m freezing eggs like crazy now J. Mustn’t forget

the two rabbits, ether… and one patient hubby.

Well, I wanted to do a

quick intro and welcome you to the Dummies group. Have a great day!

- Idaho

Hope is the thing with feathers that perches in your soul.

Dickerson

[Guest guest]

Hello , and thank you for the great welcome. My sister has definately given

my mom the " touch love " approach but I don't think it is in my nature. I just

tend to be there for those who need help, guess it is just the Christian in me.

I think my mom's actions are definately out of fear. She has lived a life of

abuse, drugs and alcohol. When she was younger and a nice guy came along she

didn't know how to handle it and always thought they were up to something. She

never could handle anyone treating her well for no reason. Except from me. I am

the only one she has ever allowed to care for her without being ugly to me and

trying to push me away. I guess that is why she has asked me to care for her

when the time comes. I am honest and tell her that she is making things worse

with the drinking. I don't candy coat her illness but I am there when she just

needs someone to be there. When new symptoms come up I explain them as best as I

can and I am always clear that they are from the liver not functioning

correctly. I always tell her she needs to see the doctor but I don't harp

because I know I am the only one that she will tell these things to. I am not

sure if I do more harm than good.

Anyhow, I live in Mississippi. I love animals I don't have as many as I once

did. I was diagnosed with fibromialga almost 2 years ago so I lightened my load.

I still have 2 goats (my nanny is a nubian mix, not sure about my buck), 4

sheep, 7 dogs, 4 cats, and about 30-40 chickens. I love the polish and silkies

the best. The polish have great personalities don't they. I am the one who feeds

and cares for them so it is hard when I get down. But my fibro is doing much

better since I am eating better, lost 30 lbs, and am exercising. I still ache

and it is definetly set off by stress so I have to be careful. I am young, only

36, and have a long road with my fibro, so I am trying to care for myself now so

that I don't end up sedentary at an early age.

I am rambling again. Yall are gonna get tired of my typing.

I want to thank everyone for their responses.

Thanks,

>

> Hi Jen,

>

> You couldn't have found a better place to help you learn. between us all we

> have been there and done that!

>

> I am and I am also a group moderator. I did tx (treatment) in 2004-05,

> it wasn't fun but I got through it and haven't had any abnormal liver

> function tests since, although I've not had a Hepatitis test since.

>

> I wish I could give you more insight as to why your mom is acting the way

> she is, but I can't. I would guess she is frightened and imitating an

> ostrich with her head in the sand.

>

> I can say that my husband would never take tx either which really pisses me

> off. I feel like I'd do anything to help him but he would have to help

> himself first.

>

> Wonder if tough love would work on your mom?

>

> I took a quick peek at your website, Anyone with lots of animals grabs my

> attention, lol. Are those Nubian Goats?

>

> What part of the country do you live in?

>

> I've got a lot of critters too. At last count I have 6 rescue cats (1 is a

> barn cat), 3 large rescue dogs, 22 parrots (of which 13 are rescues), 25

> llamas, and over a hundred white homing pigeons. also Fantails and Ringneck

> Doves. I too have Polish Chickens, I saw your photo with one of them. Silly

> things arent they? I've got one that is a dead ringer for Cruella DeVille

> (Glen Close with white fuzzy hat) in the Dalmatian movie. Along with my 4

> Polish I have about 15 other chickens and they are all pets. along with

> great egg producers. I'm freezing eggs like crazy now J. Mustn't forget the

> two rabbits, ether. and one patient hubby.

>

> Well, I wanted to do a quick intro and welcome you to the Dummies group.

> Have a great day!

>

> - Idaho

>

> Hope is the thing with feathers that perches in your soul.

>

> Dickerson

>