new member

[Guest guest]

Welcome to the group K. You are coming through loud and clear.

Jeanne in WI

Age 39

Open RNY 05/21/2002

314/ 231/150-175

5' 8 "

djgraves@...

[Guest guest]

Welcome to the group K. You are coming through loud and clear.

Jeanne in WI

Age 39

Open RNY 05/21/2002

314/ 231/150-175

5' 8 "

djgraves@...

[Guest guest]

welcome to the group

(`'·.¸(`'·.¸  ¸.·'´) ¸.·'´)

«´¨       *MICHELLE*      ¨`»

(¸.·'´(¸.·'´  `'·.¸)`' ·.¸)

               ¸.·´

              ( `·.¸

               `·.¸  )

                ¸.·)´

               (.·´

                `*.   

                     *.

                  *

[Guest guest]

welcome to the group

(`'·.¸(`'·.¸  ¸.·'´) ¸.·'´)

«´¨       *MICHELLE*      ¨`»

(¸.·'´(¸.·'´  `'·.¸)`' ·.¸)

               ¸.·´

              ( `·.¸

               `·.¸  )

                ¸.·)´

               (.·´

                `*.   

                     *.

                  *

[Guest guest]

welcome to the group

(`'·.¸(`'·.¸  ¸.·'´) ¸.·'´)

«´¨       *MICHELLE*      ¨`»

(¸.·'´(¸.·'´  `'·.¸)`' ·.¸)

               ¸.·´

              ( `·.¸

               `·.¸  )

                ¸.·)´

               (.·´

                `*.   

                     *.

                  *

[Guest guest]

Hi

All the members here are really great at being the welcome committe -

so I ususaly let them handle that and just jump in here and there if

I happen to 'think' I know something about a subject being

discussed.

Something made me hit the reply button to yours though. Please know,

*KNOW*, that this isn't impossible. That's the first step - KNOWING

that you will shed the weight. Next step - a plan. The basics =

what you eat and drink + what you do (movement) = your weight.

Start with what your drinking - don't drink your calories for the

day. Unless you need your morning coffee with cream and sugar (we

can work on that later) - no more calories or fat in anything you

drink. Can you do that? Now if you want to go really crazy on the

first step you could even say no more fried foods or high sugar/fat

foods. This still leaves a big open field as to what you can have

but still cuts out the worst of the worst.

As far as exersice - I've taken off almos 75 pounds now and only in

the last few months have I begun exersicing - and compared to these

ladies here - what I do isn't even close to exersice, it's merly a

little walk. LOL

Ang

wrote:

> Hi!

>

> I would like to present myself to you all.

>

> My name is Hayton (for short)

> I am 33 years old, married, no kids, and am a chronic pain patient.

> I am at home because of my condition, and can't exercise very much.

> We also have a little Birman cattery, which keeps me busy, and I am

a

> graphical designer by trade, so I do odd jobs from home, when I can

manage.

> I had a surgery in 1998 that has left me with nerve damage to my

right

> upper side & right side of head.

> Because of the meds, it seems that I can't take the weight off that

I put

> on after the surgery - they were trying me on all sorts of stuff

that I

> only had bad reactions to, no help. And especially weight gain.

> I now weigh 176 pounds (80 kg.) and I REALLY want to take off about

20

> pounds (10 kg.)

>

> I am hoping to find tips here, as well as trying to encourage

others!

> I am so tired of this battle, but it's easier when there's

encouragement,

> and to be able to encourage others!!!!

>

> I hope I can be an asset here to you all!

>

> Best wishes,

> H

[Guest guest]

Hi

All the members here are really great at being the welcome committe -

so I ususaly let them handle that and just jump in here and there if

I happen to 'think' I know something about a subject being

discussed.

Something made me hit the reply button to yours though. Please know,

*KNOW*, that this isn't impossible. That's the first step - KNOWING

that you will shed the weight. Next step - a plan. The basics =

what you eat and drink + what you do (movement) = your weight.

Start with what your drinking - don't drink your calories for the

day. Unless you need your morning coffee with cream and sugar (we

can work on that later) - no more calories or fat in anything you

drink. Can you do that? Now if you want to go really crazy on the

first step you could even say no more fried foods or high sugar/fat

foods. This still leaves a big open field as to what you can have

but still cuts out the worst of the worst.

As far as exersice - I've taken off almos 75 pounds now and only in

the last few months have I begun exersicing - and compared to these

ladies here - what I do isn't even close to exersice, it's merly a

little walk. LOL

Ang

wrote:

> Hi!

>

> I would like to present myself to you all.

>

> My name is Hayton (for short)

> I am 33 years old, married, no kids, and am a chronic pain patient.

> I am at home because of my condition, and can't exercise very much.

> We also have a little Birman cattery, which keeps me busy, and I am

a

> graphical designer by trade, so I do odd jobs from home, when I can

manage.

> I had a surgery in 1998 that has left me with nerve damage to my

right

> upper side & right side of head.

> Because of the meds, it seems that I can't take the weight off that

I put

> on after the surgery - they were trying me on all sorts of stuff

that I

> only had bad reactions to, no help. And especially weight gain.

> I now weigh 176 pounds (80 kg.) and I REALLY want to take off about

20

> pounds (10 kg.)

>

> I am hoping to find tips here, as well as trying to encourage

others!

> I am so tired of this battle, but it's easier when there's

encouragement,

> and to be able to encourage others!!!!

>

> I hope I can be an asset here to you all!

>

> Best wishes,

> H

[Guest guest]

H

Welcome to our group!! You will find tons of support here. The

people are just wonderful. I hope they find proper drugs for you

soon.

Anyway my name is I am 30 years old single and I weigh about

155 or so. I look forward to hearing form you agian soon.

> Hi!

>

> I would like to present myself to you all.

>

> My name is Hayton (for short)

> I am 33 years old, married, no kids, and am a chronic pain patient.

> I am at home because of my condition, and can't exercise very much.

> We also have a little Birman cattery, which keeps me busy, and I am

a

> graphical designer by trade, so I do odd jobs from home, when I can

manage.

> I had a surgery in 1998 that has left me with nerve damage to my

right

> upper side & right side of head.

> Because of the meds, it seems that I can't take the weight off that

I put

> on after the surgery - they were trying me on all sorts of stuff

that I

> only had bad reactions to, no help. And especially weight gain.

> I now weigh 176 pounds (80 kg.) and I REALLY want to take off about

20

> pounds (10 kg.)

>

> I am hoping to find tips here, as well as trying to encourage

others!

> I am so tired of this battle, but it's easier when there's

encouragement,

> and to be able to encourage others!!!!

>

> I hope I can be an asset here to you all!

>

> Best wishes,

> H

[Guest guest]

H

Welcome to our group!! You will find tons of support here. The

people are just wonderful. I hope they find proper drugs for you

soon.

Anyway my name is I am 30 years old single and I weigh about

155 or so. I look forward to hearing form you agian soon.

> Hi!

>

> I would like to present myself to you all.

>

> My name is Hayton (for short)

> I am 33 years old, married, no kids, and am a chronic pain patient.

> I am at home because of my condition, and can't exercise very much.

> We also have a little Birman cattery, which keeps me busy, and I am

a

> graphical designer by trade, so I do odd jobs from home, when I can

manage.

> I had a surgery in 1998 that has left me with nerve damage to my

right

> upper side & right side of head.

> Because of the meds, it seems that I can't take the weight off that

I put

> on after the surgery - they were trying me on all sorts of stuff

that I

> only had bad reactions to, no help. And especially weight gain.

> I now weigh 176 pounds (80 kg.) and I REALLY want to take off about

20

> pounds (10 kg.)

>

> I am hoping to find tips here, as well as trying to encourage

others!

> I am so tired of this battle, but it's easier when there's

encouragement,

> and to be able to encourage others!!!!

>

> I hope I can be an asset here to you all!

>

> Best wishes,

> H

[Guest guest]

>>>>I am hoping to find tips here, as well as trying to encourage others!

I am so tired of this battle, but it's easier when there's encouragement,

and to be able to encourage others!!!! I hope I can be an asset here to you all!

Best wishes,

H

Hi, I'm a newbie too. marge 39 living w bf Rob in brooklyn w/ Chloe cat

this is a very knowledgable and supportive group. XXXMarge

[Guest guest]

>>>>I am hoping to find tips here, as well as trying to encourage others!

I am so tired of this battle, but it's easier when there's encouragement,

and to be able to encourage others!!!! I hope I can be an asset here to you all!

Best wishes,

H

Hi, I'm a newbie too. marge 39 living w bf Rob in brooklyn w/ Chloe cat

this is a very knowledgable and supportive group. XXXMarge

[Guest guest]

Welcome , and congratulations on your new home!

I know what you mean about being in denial about your weight. As a teenager,

I was always very weight conscious, and although I was never " skinny " , I

managed to maintain an acceptable weight (although not with the healthiest

methods). After my marriage and pregnancy, I began to let my weight slide. I

made a point to not get into pictures so I would not have to face the music.

Over the next several years I allowed myself to gain more and more weight,

and in all that time, I never once made an effort to diet! I just kept

telling myself that I had always been " a little big " but was still healthy

and attractive. It wasn't until the shock of seeing my weight at 300 pounds

at the doctors office that it finally hit me: I wasn't just " a little

big " ... I was FAT, and had been lying to myself for years! So I finally

faced my problem, and decided to do something about it.

I'm on my second try... I got down to 245 pounds the first time, then gained

most of it back when I lost my motivation. This time I found this group, and

think that it will really help keep me on track. So far I am at 251, so

almost back to where I left off the first time. I hope you find the group as

helpful as I have.

If you were able to completely give up meat, I am sure you will find the

willpower to change your diet again and successfully lose weight! I keet

telling myself, if I had the willpower to quit smoking 5 packs a day, surely

I can find the willpower to change my eating habits too! Good luck, and I

look forward to hearing more from you.

~Jette~ in NC

Start Date 4/7/2003

SW-285/CW-251/MG-250/FG-160

" When the pain of staying the same is greater than the pain to change... it

is time to change "

New Member

> Hello!

>

> My name is and I have been reading your posts for a week now

> and have decided that I love the way you all support one another and

> it was time for me to join in! I am 32, 5'5 " , 220lbs, single and a

> brand new home owner (yea me!)! I went to one of my very best

> friends' weddings a few weeks ago and made a point to have pictures

> of all of us for " memories " . I got the pictures back over the

> weekend and I don't even recognize myself! I do not see that person

> when I look in the mirror and I always thought that meant I had a

> good sense of who I really am! I still believe that, but I also

> think that I am in serious denial about my weight and need to wake

> up and smell the french fries! I keep thinking that losing the

> weight and changing my lifestyle will be impossible, but I forget

> that I stopped eating meat about 8 years ago and have never looked

> back. That is a major change, I just need to find that mentality

> again and harness it to help me lose weight.

>

> My friends are great and are always supportive, but they are only

> helping me deny my unhealthy weight by never talking about (of

> course they are folowing my lead)! I would love to get the honest

> support that this group has been giving and hope to be able to find

> alot of " weight loss buddies " . Everyone I know has body image

> issues, but it really helps to have advice and support from others

> who have been a " plus size " person because I think that it really

> has a unique effect on your body, mind and most importantly, your

> spirit that others may not really understand. Looking forward

> to " posting " with you!

[Guest guest]

Hi and welcome,

I am glad you found this site, for me it has helped me tremendously

with the recent diagnosis for my almost 7 month old son Ricky. I

need more testing to determine how severe his neurosensory hearing

loss is.

It is a very hard thing to digest, but everyone here is a great

support and resource for that matter!

Keep us posted,

Montreal, Quebec

mommy to Ricky, hearing loss and other issues as well.

and Danny and Olivia, both hear fine but have other issues.

[Guest guest]

HI - we were just in Montreal this summer - we're only about 3

hours away from you in Hanover NH. We had a blast! What a gorgeous

city....

We have a faculty member here at Dartmouth - -Ann Petitto - who was

at McGill University in Montreal. She specializes in language

acquisition in deaf kids - both oral and signing. I'll ask her if she

knows of resources up your way - bet she does!

Barbara

wrote:

>Hi and welcome,

>

>I am glad you found this site, for me it has helped me tremendously

>with the recent diagnosis for my almost 7 month old son Ricky. I

>need more testing to determine how severe his neurosensory hearing

>loss is.

>

>It is a very hard thing to digest, but everyone here is a great

>support and resource for that matter!

>

>Keep us posted,

>

>

>Montreal, Quebec

>mommy to Ricky, hearing loss and other issues as well.

>and Danny and Olivia, both hear fine but have other issues.

>

>

>

>

****************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall, HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

[Guest guest]

Welcome Di

Boy I bet its cold where you are! It's -1F here (ton, West

Virginia)this morning.

I'm sorry that you have this wicked disease. And progression of it

is the pits especially when it comes faster than you can adapt to.

You are so young to be in a power wheelchair.

But you found us and that is great. Together we support, educate,

tease, and cry with each other. And when you get a chance to meet

some of us, you will find several of us sound just like you.For most

of us its PLS. We're still wondering if Vaughn's speech isn't from

nipping on that Jack 's over there in Tennessee. LOL

How old are your girls? My son and youngest just left for college

this year so I'm adjusting (and whining) with living alone with PLS.

I'm 51 on wheeled walker, shopping for electric mobility, and saving

for the van to transport it. This is my 6th year of symptoms in

which I was blessed with 3 years of stability and even regression of

symptoms.

Hope you stick with us and benefit from our fellowship

Eva in WV

>

> Hi everyone. my name is Di and Flora...bless her...gave me this

site

> to join.

> I have PLS. I apparently have had it for 6-10 years but this last

> year or so it has turned really nasty. Painful spasms and terrible

> stiffnes in my legs, thighs, hips, left arm etc. I slur my words

and

> can't form certain words now and I have to use a power wheelchair

to

> get around. This last few months it has really deterorated!

>

> I have a great neurologist at Foothills Neurosciences in Calgary

> Alberta...he has dealt with a number of PLS cases.

>

> I am feeling a bit down this last week because of having to re-

> adjust...again.....to this new level of disability....but i never

> give up!!

>

> I am 47 years ols, divorced with 2 teenage daughters who are very

> supportive. I was a crisis counselor for many years, but now I am

on

> permenant disability.....starvation income! lol.

>

> Would love to hear from any of you.

>

> Thank you Flora, melinda and loretta...who contacted me recently

> with support and info!

>

> Di M-J

[Guest guest]

Welcome Di

Boy I bet its cold where you are! It's -1F here (ton, West

Virginia)this morning.

I'm sorry that you have this wicked disease. And progression of it

is the pits especially when it comes faster than you can adapt to.

You are so young to be in a power wheelchair.

But you found us and that is great. Together we support, educate,

tease, and cry with each other. And when you get a chance to meet

some of us, you will find several of us sound just like you.For most

of us its PLS. We're still wondering if Vaughn's speech isn't from

nipping on that Jack 's over there in Tennessee. LOL

How old are your girls? My son and youngest just left for college

this year so I'm adjusting (and whining) with living alone with PLS.

I'm 51 on wheeled walker, shopping for electric mobility, and saving

for the van to transport it. This is my 6th year of symptoms in

which I was blessed with 3 years of stability and even regression of

symptoms.

Hope you stick with us and benefit from our fellowship

Eva in WV

>

> Hi everyone. my name is Di and Flora...bless her...gave me this

site

> to join.

> I have PLS. I apparently have had it for 6-10 years but this last

> year or so it has turned really nasty. Painful spasms and terrible

> stiffnes in my legs, thighs, hips, left arm etc. I slur my words

and

> can't form certain words now and I have to use a power wheelchair

to

> get around. This last few months it has really deterorated!

>

> I have a great neurologist at Foothills Neurosciences in Calgary

> Alberta...he has dealt with a number of PLS cases.

>

> I am feeling a bit down this last week because of having to re-

> adjust...again.....to this new level of disability....but i never

> give up!!

>

> I am 47 years ols, divorced with 2 teenage daughters who are very

> supportive. I was a crisis counselor for many years, but now I am

on

> permenant disability.....starvation income! lol.

>

> Would love to hear from any of you.

>

> Thank you Flora, melinda and loretta...who contacted me recently

> with support and info!

>

> Di M-J

[Guest guest]

Welcome Di

Boy I bet its cold where you are! It's -1F here (ton, West

Virginia)this morning.

I'm sorry that you have this wicked disease. And progression of it

is the pits especially when it comes faster than you can adapt to.

You are so young to be in a power wheelchair.

But you found us and that is great. Together we support, educate,

tease, and cry with each other. And when you get a chance to meet

some of us, you will find several of us sound just like you.For most

of us its PLS. We're still wondering if Vaughn's speech isn't from

nipping on that Jack 's over there in Tennessee. LOL

How old are your girls? My son and youngest just left for college

this year so I'm adjusting (and whining) with living alone with PLS.

I'm 51 on wheeled walker, shopping for electric mobility, and saving

for the van to transport it. This is my 6th year of symptoms in

which I was blessed with 3 years of stability and even regression of

symptoms.

Hope you stick with us and benefit from our fellowship

Eva in WV

>

> Hi everyone. my name is Di and Flora...bless her...gave me this

site

> to join.

> I have PLS. I apparently have had it for 6-10 years but this last

> year or so it has turned really nasty. Painful spasms and terrible

> stiffnes in my legs, thighs, hips, left arm etc. I slur my words

and

> can't form certain words now and I have to use a power wheelchair

to

> get around. This last few months it has really deterorated!

>

> I have a great neurologist at Foothills Neurosciences in Calgary

> Alberta...he has dealt with a number of PLS cases.

>

> I am feeling a bit down this last week because of having to re-

> adjust...again.....to this new level of disability....but i never

> give up!!

>

> I am 47 years ols, divorced with 2 teenage daughters who are very

> supportive. I was a crisis counselor for many years, but now I am

on

> permenant disability.....starvation income! lol.

>

> Would love to hear from any of you.

>

> Thank you Flora, melinda and loretta...who contacted me recently

> with support and info!

>

> Di M-J

[Guest guest]

Hi Angel.

Welcome to the group.

Just before I leave for my hemodialysis treatment, I just wanted to greet

you, as I'm sure many others will. I live in Canada, so, I can't really

advise you about medicare and social security issues. I'm sure there must be

a solution though. With thousands on various forms of dialysis in the US,

surely there must be some federal or state program or combination of both

your social worker is overlooking - unless it's because your income is too

high. Where I live, my income is borderline for one of the provincial drug

programs (the one where there's no deductible), even though it's a very low

income, and, just this past december, I had to deal with getting copies of

all my medication purchases and dental costs for the past year, wife's pay

stubs, letter from Canada Pension Plan confirming my income benefit, proof

of rent and proof of fire insurance cost, etc. I think we all have hassles

like that every once in a while, no matter where we live. If we don't work,

we pay for our benefits by the occasional but regular administrative hassles

bureaucrats throw our way. When it happens, on top of being on dialysis,

it's discouraging, no doubt about it.

Don't get too discouraged though. The majority of our members live in the

U.S., so, hopefully, someone will be able to direct you to the right

information. Got to leave for dialysis now...

Pierre

on hemodialysis for 2-1/2 years

New Member

Hello, I am a new member and have not really spoken with anyone about

dealing with IgA. I was diagnosised a little over 4 years ago when I was 28.

For the first 3 years or so my kidney function remained stable at about 25%,

then all of a sudden in December of 2003 it took a nose dive... I was on

peritoneal diaylisis by April and it was a very difficult transisition as

you all may know. Now the company I have been working for over the past 9

years has lost our group coverage for health insurance. This of course

leaves me with Medicare coverage only. What do you do about prescriptions?

And that 20% co pay can really add up. I have spoken to both my social

worker at the diaylsis center and translife at the hospital and basically I

am being told there aren't any real solutions. I can not imagine that with

as many people that are suffering through Kidney failure, that it is

possible to be in a situation where there is no possibility of additional or

supplemental insurance to Medicare,

atleast not being offered in the state of Florida.

I am a single mother and I work very hard to make sure that I maintain as

much of a normal life as possible for both me and my daughter... but what is

one to do when everyone closes the door and will not help accomodate the

need for medications and medical needs that are required to sustain your

life? The stress of dealing with the diaylisis treatment every day, all the

meds, the pain in my joints, the excessive tiredness..and the overall

awareness of the illness..is more than enough but when you add to that the

possibility of not being able to afford medical treatment and medications...

I don't know that it is tolerable... In over 4 years of dealing with my

illness... 2 weeks ago was my first nervous breakdown... I was entertaining

the idea of discontinuing my diaylisis treatments and just letting go... it

can be so hard dealing with this day in and day out... and maybe I make it

harder on myself by never really talking about it or expressing my fears or

concerns...

I have read some of your experiences and my heart goes out to all of

you...Any information or experience that you can share with me will be

enlightening.

Thanks a lot

Angel

[Guest guest]

Hi Deb...

You hit the nail on the head... My daughter is 9 and she is the sunshine in my

life... she gives me strength to wear a smile on many days. But at the same time

she tears me up inside because she always says things like she wishes she didn't

have a sick mommy, or she doesn't want to be like me when she grows up cause

mommy is so sick. She gets upset when I can not tuck her in at night because I

am hooked up the the diaylisis machine. Sometimes I see the pain on her face...

we are still able to do things together, like go to the movies and go to the

park, but more often than not I am too tired to really play with her... I think

seeing her pain really intensifies mine if that makes sense.

I also do not quality for Medicaid, but I did just learn about a shared cost

program through medicaid that may help. I am going to see what I can find out

about it, but from what I have been told, once you medical bills for the month

esceed a certain percentage of your income, Medicaid will kick in and pay all

the bills for that month. This I think will be really helpful after my

transplant since the medications alone will be approx 3 grand. Maybe they have

this program Colorado, it could help in our situation. I am going to try to see

how much all of my prescriptions cost with out insurance... If I can fill them

all on the 1 or 2 of the month, and it exceeds my share cost amount, then

Medicaid will pick up the price and all my medical expenses for the rest of the

month.

I really appreciate your kind words and I am glad that I joined this support

group. It is nice to speak with people around the world with life experiences

similar to mine, it lets me know there is hope... and I all of a sudden don't

feel like I am by my self on this one.

Thanks a bunch.

Deb Hersperger wrote:

Dear Angel,

I was so sad to read your email, for many reasons. I can't imagine

having a young child while dealing with this. I can understand your

depression with the costs of the treatments and prescriptions. I too am

without insurance. Although I have yet to have to go on dialysis, the costs

of the biopsy and all the tests are just hanging out there for me - I had to

get myself to the point that I refuse to worry about the hospital bill.

It's all I can do to pay my neph and my prescriptions. Colorado has a

program that I am looking into (I make too much money to qualify for

Medicaid - but not enough to pay the high cost of individual insurance) - at

any rate the program I'm looking into is for uninsurable individuals - I

think the state must kick in some of the cost of the policy because if I put

a high deductible on it - say $5,000 - then it will cost about $850.00 per

quarter. Are you low enough income to qualify for Medicaid? Are you still

working - if not - can you qualify for disability insurance through Social

Security?

As for giving up --------- I have had those thoughts too ------ and the

biggest thing that keeps me from it is that my kids would be without a

parent (I am also a single mom). Now, my kids are 24 and 26 and are still

to young to cope with me dying. So.......... since your daughter is much

younger, you need to keep going and keep strong for her. She needs you.

I'm telling you all of this because I do understand where you are coming

from. The money issue has gotten me down more than the illness itself.

Some days I am very pro active and other days I just know if I think about

the money I'll be down in the dumps for days - so I pull a Scarlet O'Hara

and decide to think about it tomorrow.

The people in this group are very caring and knowledgeable and can help

you along.

Deb

New Member

Hello, I am a new member and have not really spoken with anyone about

dealing with IgA. I was diagnosised a little over 4 years ago when I was 28.

For the first 3 years or so my kidney function remained stable at about 25%,

then all of a sudden in December of 2003 it took a nose dive... I was on

peritoneal diaylisis by April and it was a very difficult transisition as

you all may know. Now the company I have been working for over the past 9

years has lost our group coverage for health insurance. This of course

leaves me with Medicare coverage only. What do you do about prescriptions?

And that 20% co pay can really add up. I have spoken to both my social

worker at the diaylsis center and translife at the hospital and basically I

am being told there aren't any real solutions. I can not imagine that with

as many people that are suffering through Kidney failure, that it is

possible to be in a situation where there is no possibility of additional or

supplemental insurance to Medicare,

atleast not being offered in the state of Florida.

I am a single mother and I work very hard to make sure that I maintain as

much of a normal life as possible for both me and my daughter... but what is

one to do when everyone closes the door and will not help accomodate the

need for medications and medical needs that are required to sustain your

life? The stress of dealing with the diaylisis treatment every day, all the

meds, the pain in my joints, the excessive tiredness..and the overall

awareness of the illness..is more than enough but when you add to that the

possibility of not being able to afford medical treatment and medications...

I don't know that it is tolerable... In over 4 years of dealing with my

illness... 2 weeks ago was my first nervous breakdown... I was entertaining

the idea of discontinuing my diaylisis treatments and just letting go... it

can be so hard dealing with this day in and day out... and maybe I make it

harder on myself by never really talking about it or expressing my fears or

concerns...

I have read some of your experiences and my heart goes out to all of

you...Any information or experience that you can share with me will be

enlightening.

Thanks a lot

Angel

---------------------------------

Do you Yahoo!?

The all-new My Yahoo! - Get yours free!

[Guest guest]

Hi Deb...

You hit the nail on the head... My daughter is 9 and she is the sunshine in my

life... she gives me strength to wear a smile on many days. But at the same time

she tears me up inside because she always says things like she wishes she didn't

have a sick mommy, or she doesn't want to be like me when she grows up cause

mommy is so sick. She gets upset when I can not tuck her in at night because I

am hooked up the the diaylisis machine. Sometimes I see the pain on her face...

we are still able to do things together, like go to the movies and go to the

park, but more often than not I am too tired to really play with her... I think

seeing her pain really intensifies mine if that makes sense.

I also do not quality for Medicaid, but I did just learn about a shared cost

program through medicaid that may help. I am going to see what I can find out

about it, but from what I have been told, once you medical bills for the month

esceed a certain percentage of your income, Medicaid will kick in and pay all

the bills for that month. This I think will be really helpful after my

transplant since the medications alone will be approx 3 grand. Maybe they have

this program Colorado, it could help in our situation. I am going to try to see

how much all of my prescriptions cost with out insurance... If I can fill them

all on the 1 or 2 of the month, and it exceeds my share cost amount, then

Medicaid will pick up the price and all my medical expenses for the rest of the

month.

I really appreciate your kind words and I am glad that I joined this support

group. It is nice to speak with people around the world with life experiences

similar to mine, it lets me know there is hope... and I all of a sudden don't

feel like I am by my self on this one.

Thanks a bunch.

Deb Hersperger wrote:

Dear Angel,

I was so sad to read your email, for many reasons. I can't imagine

having a young child while dealing with this. I can understand your

depression with the costs of the treatments and prescriptions. I too am

without insurance. Although I have yet to have to go on dialysis, the costs

of the biopsy and all the tests are just hanging out there for me - I had to

get myself to the point that I refuse to worry about the hospital bill.

It's all I can do to pay my neph and my prescriptions. Colorado has a

program that I am looking into (I make too much money to qualify for

Medicaid - but not enough to pay the high cost of individual insurance) - at

any rate the program I'm looking into is for uninsurable individuals - I

think the state must kick in some of the cost of the policy because if I put

a high deductible on it - say $5,000 - then it will cost about $850.00 per

quarter. Are you low enough income to qualify for Medicaid? Are you still

working - if not - can you qualify for disability insurance through Social

Security?

As for giving up --------- I have had those thoughts too ------ and the

biggest thing that keeps me from it is that my kids would be without a

parent (I am also a single mom). Now, my kids are 24 and 26 and are still

to young to cope with me dying. So.......... since your daughter is much

younger, you need to keep going and keep strong for her. She needs you.

I'm telling you all of this because I do understand where you are coming

from. The money issue has gotten me down more than the illness itself.

Some days I am very pro active and other days I just know if I think about

the money I'll be down in the dumps for days - so I pull a Scarlet O'Hara

and decide to think about it tomorrow.

The people in this group are very caring and knowledgeable and can help

you along.

Deb

New Member

Hello, I am a new member and have not really spoken with anyone about

dealing with IgA. I was diagnosised a little over 4 years ago when I was 28.

For the first 3 years or so my kidney function remained stable at about 25%,

then all of a sudden in December of 2003 it took a nose dive... I was on

peritoneal diaylisis by April and it was a very difficult transisition as

you all may know. Now the company I have been working for over the past 9

years has lost our group coverage for health insurance. This of course

leaves me with Medicare coverage only. What do you do about prescriptions?

And that 20% co pay can really add up. I have spoken to both my social

worker at the diaylsis center and translife at the hospital and basically I

am being told there aren't any real solutions. I can not imagine that with

as many people that are suffering through Kidney failure, that it is

possible to be in a situation where there is no possibility of additional or

supplemental insurance to Medicare,

atleast not being offered in the state of Florida.

I am a single mother and I work very hard to make sure that I maintain as

much of a normal life as possible for both me and my daughter... but what is

one to do when everyone closes the door and will not help accomodate the

need for medications and medical needs that are required to sustain your

life? The stress of dealing with the diaylisis treatment every day, all the

meds, the pain in my joints, the excessive tiredness..and the overall

awareness of the illness..is more than enough but when you add to that the

possibility of not being able to afford medical treatment and medications...

I don't know that it is tolerable... In over 4 years of dealing with my

illness... 2 weeks ago was my first nervous breakdown... I was entertaining

the idea of discontinuing my diaylisis treatments and just letting go... it

can be so hard dealing with this day in and day out... and maybe I make it

harder on myself by never really talking about it or expressing my fears or

concerns...

I have read some of your experiences and my heart goes out to all of

you...Any information or experience that you can share with me will be

enlightening.

Thanks a lot

Angel

---------------------------------

Do you Yahoo!?

The all-new My Yahoo! - Get yours free!

[Guest guest]

Hi Deb...

You hit the nail on the head... My daughter is 9 and she is the sunshine in my

life... she gives me strength to wear a smile on many days. But at the same time

she tears me up inside because she always says things like she wishes she didn't

have a sick mommy, or she doesn't want to be like me when she grows up cause

mommy is so sick. She gets upset when I can not tuck her in at night because I

am hooked up the the diaylisis machine. Sometimes I see the pain on her face...

we are still able to do things together, like go to the movies and go to the

park, but more often than not I am too tired to really play with her... I think

seeing her pain really intensifies mine if that makes sense.

I also do not quality for Medicaid, but I did just learn about a shared cost

program through medicaid that may help. I am going to see what I can find out

about it, but from what I have been told, once you medical bills for the month

esceed a certain percentage of your income, Medicaid will kick in and pay all

the bills for that month. This I think will be really helpful after my

transplant since the medications alone will be approx 3 grand. Maybe they have

this program Colorado, it could help in our situation. I am going to try to see

how much all of my prescriptions cost with out insurance... If I can fill them

all on the 1 or 2 of the month, and it exceeds my share cost amount, then

Medicaid will pick up the price and all my medical expenses for the rest of the

month.

I really appreciate your kind words and I am glad that I joined this support

group. It is nice to speak with people around the world with life experiences

similar to mine, it lets me know there is hope... and I all of a sudden don't

feel like I am by my self on this one.

Thanks a bunch.

Deb Hersperger wrote:

Dear Angel,

I was so sad to read your email, for many reasons. I can't imagine

having a young child while dealing with this. I can understand your

depression with the costs of the treatments and prescriptions. I too am

without insurance. Although I have yet to have to go on dialysis, the costs

of the biopsy and all the tests are just hanging out there for me - I had to

get myself to the point that I refuse to worry about the hospital bill.

It's all I can do to pay my neph and my prescriptions. Colorado has a

program that I am looking into (I make too much money to qualify for

Medicaid - but not enough to pay the high cost of individual insurance) - at

any rate the program I'm looking into is for uninsurable individuals - I

think the state must kick in some of the cost of the policy because if I put

a high deductible on it - say $5,000 - then it will cost about $850.00 per

quarter. Are you low enough income to qualify for Medicaid? Are you still

working - if not - can you qualify for disability insurance through Social

Security?

As for giving up --------- I have had those thoughts too ------ and the

biggest thing that keeps me from it is that my kids would be without a

parent (I am also a single mom). Now, my kids are 24 and 26 and are still

to young to cope with me dying. So.......... since your daughter is much

younger, you need to keep going and keep strong for her. She needs you.

I'm telling you all of this because I do understand where you are coming

from. The money issue has gotten me down more than the illness itself.

Some days I am very pro active and other days I just know if I think about

the money I'll be down in the dumps for days - so I pull a Scarlet O'Hara

and decide to think about it tomorrow.

The people in this group are very caring and knowledgeable and can help

you along.

Deb

New Member

Hello, I am a new member and have not really spoken with anyone about

dealing with IgA. I was diagnosised a little over 4 years ago when I was 28.

For the first 3 years or so my kidney function remained stable at about 25%,

then all of a sudden in December of 2003 it took a nose dive... I was on

peritoneal diaylisis by April and it was a very difficult transisition as

you all may know. Now the company I have been working for over the past 9

years has lost our group coverage for health insurance. This of course

leaves me with Medicare coverage only. What do you do about prescriptions?

And that 20% co pay can really add up. I have spoken to both my social

worker at the diaylsis center and translife at the hospital and basically I

am being told there aren't any real solutions. I can not imagine that with

as many people that are suffering through Kidney failure, that it is

possible to be in a situation where there is no possibility of additional or

supplemental insurance to Medicare,

atleast not being offered in the state of Florida.

I am a single mother and I work very hard to make sure that I maintain as

much of a normal life as possible for both me and my daughter... but what is

one to do when everyone closes the door and will not help accomodate the

need for medications and medical needs that are required to sustain your

life? The stress of dealing with the diaylisis treatment every day, all the

meds, the pain in my joints, the excessive tiredness..and the overall

awareness of the illness..is more than enough but when you add to that the

possibility of not being able to afford medical treatment and medications...

I don't know that it is tolerable... In over 4 years of dealing with my

illness... 2 weeks ago was my first nervous breakdown... I was entertaining

the idea of discontinuing my diaylisis treatments and just letting go... it

can be so hard dealing with this day in and day out... and maybe I make it

harder on myself by never really talking about it or expressing my fears or

concerns...

I have read some of your experiences and my heart goes out to all of

you...Any information or experience that you can share with me will be

enlightening.

Thanks a lot

Angel

---------------------------------

Do you Yahoo!?

The all-new My Yahoo! - Get yours free!

[Guest guest]

Hi Phil,

I hear you (well, except for that last sentence, but let's not go there).

The bottom line is that folks don't see the bottom line. I've worked on

various medical policy research projects the past year and every single

study - including those presented to the US Senate - shows that taking care

of people's health produces a good return on investment in terms of

increased productive worker hours, increased standard of living, ect. Even

more dramatic results are shown when you look on the return on investment

for monies advanced for medical research. Our current third payer system

just doesn't work.

Cy

Re: Re: New Member

> >

> >

> >

> >

> > You are right about that... the illness is more than enough to deal

> with,

> > really you would think medical coverage would be a given. But the health

> > industry becomes more of a money making machine daily. I have been

> doing a

> > lot of research trying to find out what Florida has to offer and beside

> > Medicare to cover 80% of medical.. there isn't much... We really do

> not have

> > any programs that cover medication... well none that I have found

> yet... but

> > I'll keep looking...

> >

> > Thanks a bunch

> > Angel

>

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Hi Phil,

I hear you (well, except for that last sentence, but let's not go there).

The bottom line is that folks don't see the bottom line. I've worked on

various medical policy research projects the past year and every single

study - including those presented to the US Senate - shows that taking care

of people's health produces a good return on investment in terms of

increased productive worker hours, increased standard of living, ect. Even

more dramatic results are shown when you look on the return on investment

for monies advanced for medical research. Our current third payer system

just doesn't work.

Cy

Re: Re: New Member

> >

> >

> >

> >

> > You are right about that... the illness is more than enough to deal

> with,

> > really you would think medical coverage would be a given. But the health

> > industry becomes more of a money making machine daily. I have been

> doing a

> > lot of research trying to find out what Florida has to offer and beside

> > Medicare to cover 80% of medical.. there isn't much... We really do

> not have

> > any programs that cover medication... well none that I have found

> yet... but

> > I'll keep looking...

> >

> > Thanks a bunch

> > Angel

>

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Hi Phil,

I hear you (well, except for that last sentence, but let's not go there).

The bottom line is that folks don't see the bottom line. I've worked on

various medical policy research projects the past year and every single

study - including those presented to the US Senate - shows that taking care

of people's health produces a good return on investment in terms of

increased productive worker hours, increased standard of living, ect. Even

more dramatic results are shown when you look on the return on investment

for monies advanced for medical research. Our current third payer system

just doesn't work.

Cy

Re: Re: New Member

> >

> >

> >

> >

> > You are right about that... the illness is more than enough to deal

> with,

> > really you would think medical coverage would be a given. But the health

> > industry becomes more of a money making machine daily. I have been

> doing a

> > lot of research trying to find out what Florida has to offer and beside

> > Medicare to cover 80% of medical.. there isn't much... We really do

> not have

> > any programs that cover medication... well none that I have found

> yet... but

> > I'll keep looking...

> >

> > Thanks a bunch

> > Angel

>

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Hi , I am sorry your daughter is having such a rough

time...and you too trying to deal with the docs! I would get a copy

of the lab results which will show that her TSH is out of

range....it should be flagged. Anyway, then show this to your doc

and ask him if nothing is wrong then why is it out of range....would

he be willing to risk a law suit for misdiagnosis rather than refer

you to an ped endo???? Ask him if he is a specialist in

endocrinology and capable of making the decision...ask him how many

hours of training/education he had regarding thyroid...I am just

getting angry....i'll hush....

BUT, you are Kaitlin's best advocate...fight like crazy....call the

doc daily until he gets tired of hearing you and refers you on just

to get you out of his hair....or just camp out in his office

Squeeky Wheel....

Hang in there,

Kat

>

> Hi everyone. My name is and I have a 22 month old daughter

> Kaitlin who is in the process, we hope, of being diagnosed. Since

> Christmas we have noticed that our daughter's hair is thinning and

> falling out. She is also very tired all the time. She wakes up

in

> the morning and after naps and it is as if she never got any

sleep.

> She gets frequent infections and it seems like they take twice as

> long to resolve. If she needs to be treated with antibiotics it

> usually takes 2-3 rounds before the infection clears up.

>

> About 3 weeks ago her doctor (family pract.) ordered blood work

for

> her. We were told that thyroid conditions in children her age wer

> relatively rare so when the first set of results came back they

> repeated the process. We were told that it was a " false

positive " .

> However when I spoke with the doctor to get the results I was a

bit

> shocked. I have done enought research in the past 3 weeks that I

> know the results are not accurate.

>

> Her T3/T4 ratio is within " normal " range however her TSH was 9.6

My

> father happens to know an endocrinologist that he works with and

gave

> the results to him. He believes that she is hypothyroid,

especially

> since she is showing so many of the symptoms. Here's the

> problem...Our dr. won't give us a referral to a ped.

endocrinologist

> because he BELIEVES that NOTHING IS WRONG!!! I have been so

> frustrated. Of course I will take Kaitlin in myself however it

would

> be nice to have insurance because I know specialist are expensive.

>

> Sorry this is so long but I just needed to vent with others who

would

> understand my frustration.

>

> I look forward to learning more from the group and I'm sure glad I

> found you guys.

>

>

>