Introduction

[Guest guest]

Original Article: /list/chiari/?start=11683

> HELLO. MYNAME IS CHRISTINA BRADY, I JUST JOINED THIS GROUP AND I HAVE

MILLIONS OF QUESTIONS SO FIRST I'LL START OUT BY TELLING YOU MY STORY. I WAS

FIRST DIAGNOSED WITH HYDRO. AT THE AGE OF 19. MY FIRST SURGERY WAS THE

SUB-CRAINIOTOMY, FOR THE ARNOLD-CHAIRI MALFORMATION THE SURGERY ONLY LASTED 2

HOURS AND AS FAR AS I KNOW IT WENT GREAT AFTER A WEEK OF ALOT OF PAIN AND STRESS

I WAS BACK TO MYSELF I WAS SENT HOME ON STEROIDS TO REDUCE THE SWELLING FROM THE

SURGERY. AFTER A WEEK OR TWO THE SAME SYMPTOMS CAME BACK, THIS TIME TEN TIMES

WORSE. ONE NIGHT THE NEXT THING I KNOW I'M RIGHT BACK IN THE ER AND 2 DAYS LATER

AFTER ALL THOSE TESTS, AND POKES MY DOCTOR HAD TOLD ME THAT BECAUSE OF THE

SURGERY THE FLUID HAD MORE THAN DOUBLED BECAUSE OF THE STRESS AND ALSO THEY WERE

TAPERING ME OFF OF THE STEROIDS SO THE WHOLE TIME I WAS BACK HOME THE MEDS. WERE

MY PAIN AND SUFFERINGS COVERUP. WELL THIS TIME IT WAS THE SHUNT PLACEMENT THAT

SURGERY LASTED ABOUT 1 AND A HALF HOURS. I HAD A PRETTY ROUGH TIME DEALING WITH

THE SURGERIES AND THE WEIRD PART OF IT ALL IS THAT, IT'S BEEN A YEAR AND NOW THE

REALITY AND EMOTIONAL PART IS JUST NOW HITING ME. NOT TO THE POINT THAT IT'S

RUINING MY LIFE BUT, THE FACT OF ME NOT KNOWING THAT MUCH SCARES ME. OTHER THAN

BEING ALITTLE MOODY I FEEL LIKE IT NEVER HAPPENED. SO TELL ME ALL YOU KNOW AND

HELP ME UNDERSTAND.

>

>

> THANX CHRISTINA

B.

>

> nofear@...

>

>

,

I am the wife of an ACMer, and I know and understand what you are saying. It

doesn't really seem real at first.......you just go through the motions of

preparing for surgery, going through surgery, recovering...etc. Once all that

settles down, you start to think. I know that that is why I hunger for even

more information now....it keeps me going!!

Welcome to the group.....it's an incredible group and I'm sure you will find

comfort here.

Wendi--NM

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

[Guest guest]

Hi Vicki

Hang in there it seems it is a constant battle some days we win and some days we

loose.... I try to take it one day at a time then it doesn't seem so

overwhelming....If I totally mess up a day I am relieved to know that tomorrow

starts another one. Lori

Recipe By : Marguerite Patten's Jams, Pickles and Jellies

Serving Size : 1 Preparation Time: 0:15

Categories :

Diabetic Jam

Amount

Measurement

Ingredient

Preparation Method

1

pound

fruit

little water(*)

see note

1

tablespoon

hot w

1/2

ounce

powdered gelatin

9

saccharin tablets

1.Simmer fruit with water until soft.

2. Crush the sacharin tablets dissolved in the tablespoon hot water.

3. Add to the hot but not boiling fruit.

4.Add the gelatin dissolved in the 1/8 pint of hot water.

5. Stir briskly for several minutes.

6. Pour into small jars with firmly fitting tops and seal down.

7. Stand in cool place. This will keep for some days.

7. Add the gelating dissolved in a little of the hot syrup.

8. Remove from heat.

9. Bottle while still hot.

10. Cover at once.

LikeWhatIB@... wrote:

> From: LikeWhatIB@...

>

> Hi,

>

> My name is Vicki and I've had diabetes for 11 years now. Five years of that

> time I have been insulin-dependent. I'm overweight...tired all of the

> time...and have recently had to quit work to monitor my diabetes. I slip back

> into " denial " very easily and I know I can't keep slipping up or my condition

> can become life threatening again. I really, really need motivation and

> support! Thanks for listening.

>

> Vicki

> LikeWhatIB@...

>

> ------------------------------------------------------------------------

> Start a new hobby. Meet a new friend.

> http://www.onelist.com

> Onelist: The leading provider of free email list services

[Guest guest]

<< Now recently i was told that my doctor has not put me on insulin because it

takes something (i'm very unclear on this) and turns it into fat and that

there is a possibility i will gain alot of weight. >>

Hi Pamela - Welcome!

I'd be interested in that too - over the past week or so since I have been on

this increased dosage of Insulin, I have noticed I am getting more bloated -

at first I thought it was a temporary thing - but, the scales at oncology show

I gained 7 lbs! YIKES! The nurse suggested I was just retaining water - how

do you get around this one - I drink as much water as I can - and yesterday, I

bought an Iced Tea machine - thought maybe that by drinking more of a diuretic

that would help.

in Port Orange, FL

[Guest guest]

Pamela - Your letter must have been directed to me. I'm 63 years old though.

I've been a diabetic for 10 years. I too went through disbelief and denial -

no history of diabetes in my family and I'm an avid genealogy pursuer. My

Dr. had me go to a 5 day training course given by our local hospital when I

was first diagnosed. People with diabetes who were hospitalized attended as

well. It was a great shock to me and very informative. I was put on oral

medications which seemed to help. Each time I went in for a checkup, my Dr.

would urge me to lose weight. I tried without much success. The few lbs I

lost kept coming back to be lost again and again. He had to increase my

medication - I saw an endocrinologist who was tougher and had me keep logs

who also had to increase my medication.

Last fall I found a web site run by Dr. Raines, himself a type II

diabetic who runs a diabetic clinic and who gave some good explanations. He

claims that diabetes is a metabolic disease and since your metabolism acts

differently than non-diabetics the food you eat makes a difference as well.

He gives the EZ diet he devised for himself and his patients. I tried using

it as a guideline and lost 10 lbs!

I wish I could say that it worked wonders for my diabetes and caused my

blood sugar to drop. It didn't. I was at maximum dose oral medication with

blood sugar readings in the 200 - 280's when I tried it; I didn't follow it

completely - being skeptical but my readings were coming down a bit. My Dr.

sent me to Lahey Clinic where I see two endocrinologists and a teaching

nurse. I went on insulin in January. I was surprised when both the

endocrinologists and the teaching nurse approved the Dr. Chuck diet. The

teaching nurse even made a copy to keep on file and pass on to others.

Before I went on the insulin, the Dr.s said my only choices were insulin,

Rezulin which they refused to prescribe or for me to give up - they then

enumerated many of the evils that can occur when diabetes gets out of

control. After telling them to stop, I agreed to go on insulin. It's not as

bad as I thought. My greatest fear was of injecting the insulin. a,

the teaching nurse, stood over me while I injected myself with a saline

solution to see what it would be like. Later when I had my insulin

prescription, she showed me how to mix the doses and supervised my first

injection. I had thought the pain would be intense - like falling on a

sword. It didn't hurt at all! The needle is very thin - at most it is a

minor prick in position the needle - the finger pricking of the glucose

monitor is much worse. They gave me a new Accu-check monitor (more accurate

than my old monitor, requires less blood, smaller in size), also a new

finger pricking devise Softclix. Am still using my old pen-lite as I have a

lot of lancelets remaining; I plan to switch over though - Softclix is

nearly painless.

I have learned a lot since January. I found this web group. I am learning

about the effects different carbohydrates have on me. I joined a local

diabetes support group in town. It's not as bad as I thought. I asked one of

the endocrinologists about a series of diabetes lectures being given at

Lahey Clinic - he said it wouldn't hurt if I had nothing else to do and

wanted to spend the money [i took that to mean that I was doing fine already

and didn't bother with it]

5 years ago my older sister was diagnosed diabetic. She is on oral

medication. She thinks we probably got diabetes genes from our mother - I'm

holding out for my father's line. Actually, I think the two of us may be

some sort of mutants who are the first in our line.

Regarding weight gain with insulin. I asked the endocrinologists about that.

They said that when your blood sugars are high, you are excreting sugar

(sugar = calories). With the insulin, it corrects the loss and causes a

temporary weight gain. In my case when I went on insulin, my weight went up

two lbs - it came back down in about 2 weeks, just in time for another

increase in my insulin dose - I realize that that happens now and it doesn't

bother me. I still have the ten lbs off I lost on Dr. Chuck's diet and plan

to stick with his advice and the advise I've picked up from here and

elsewhere about watching the carbs. Another thing about going on insulin -

they start you on a low dose, check your logs and adjust your dosage. I mix

my own insulin and take it before breakfast and before dinner. The morning

dosage is different from the evening. They told me not to be alarmed when

they raised the dosage. The goal is to get my blood sugar as normal as

possible - the amount of insulin is increased slowly so I don't suffer a low

blood sugar reaction. The Lahey Clinic team has been great!

The advantages of insulin may even outweigh oral medications. You take more

control of your disease, less pills - you are more aware of how what you eat

and what exercise you do can affect you. My Dr. claims I have more energy

and that that I will continue to feel better. He may be right. I had my

physical last month and came out all normal range except for the diabetes

blood sugar - but that was down considerably from the previous testing.

Dr.Chuck's web site is: http://www.dr-diabetes.com/

the At 06:25 AM 3/29/99 -0700, you wrote:

>

>

>Greetings All -

>I'd like to introduce myself to the list. My name is Pamela and

>i'm 36 years old and was diagnosed as a diabetic approximately

>11 years ago. In that time i've gone through major changes, including

>disbelief, where i just tried to ignore it and it would go away to

>slamming my fists and crying 'why me'.

>Over this time, i've also made alot of changes regarding diet and

>exercise and that seemed to work for awhile. In the past 3 or 4

>years i've been on a variety of oral medicines, which also helped

>for awhile. Now regardless what i do.. medicine, exercise, eating

>properly, i cannot get my blood sugars under control. They are

>always in the upper 200's and this scares me. I can feel the affects

>of having blood sugars this high taking its toll on my body, my eye-

>sight, skin lesions, even a diabetic ulcer on the back of my leg. I

>have read everywhere that alot of type II diabetics eventually have

>to go on insulin. I was wondering if this has happened to anybody

>on this list. Now recently i was told that my doctor has not put me

>on insulin because it takes something (i'm very unclear on this) and

>turns it into fat and that there is a possibility i will gain alot of

>weight.

>Can anybody tell me if this is true and how they handle it?

>I'm looking forward to getting to know everybody on the list better.

>I signed up for it a day ago looking for some kind of support from

>people who also might be experiencing much of the same thing i'm

>going through. Any suggestions would be greatly appreciated.

>Thank you all for you time.

>Pamela

>

>

>

>------------------------------------------------------------------------

>Start a new hobby. Meet a new friend.

>http://www.onelist.com

>Onelist: The leading provider of free email list services

>

>

[Guest guest]

Hi Pat,

Thanks for the web page for Dr Chuck. His page is fantastic, and I

particularly liked the page about good control and what your bg's should be

before meals and after, etc. I printed that one out.

Meenie

[Guest guest]

Your welcome, Meenie. I think Dr. Chuck is fantastic too. I wrote him an

e-mail and heard back from him in 2 days! - Pat

At 09:13 PM 3/29/99 -0500, you wrote:

>

>

>

>Hi Pat,

>Thanks for the web page for Dr Chuck. His page is fantastic, and I

>particularly liked the page about good control and what your bg's should be

>before meals and after, etc. I printed that one out.

> Meenie

>

>

>

>

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi all - In 's last post she mentioned that her bro-in-law's doc

wanted him to get a profile ( I am assuming that this is a type of BG

monitor). With all the talk that has gone on about what kind people use I

have a question? What is the difference between brands - I mean are they just

shaped different - or are some more accurate than others? I know that some of

them have different functions i.e. memory and such but since I always write

my BG down I don't think I would need that. By the way I use a Glucometer

Elite that I was given at my hospital diabetes class and yes my strips are

expensive too - tend to run a little less that a buck a strip - but

fortunately my insurance pays for a great percentage of that. Helen also

mentioned something about her insulin being " stuffed " what does this mean?

Thanks - Rebekah

[Guest guest]

Hi ,

go to http://www.childrenwithdiabetes.com/d_07_010.htm

This is the address for the meterbank - your bil can get a free meter there

if they have any available.

Also, someone on this list said you can get a free meter at Walmart if you

bought the strips.

Meenie

Introduction

>

>

>dawn , 24, and diagnosed may 4 1997 (never will forget that day)

>

>tho I found this list because my brother in law spent all of easter in th

>ehospital.. thursday afternoon he was on hs was to an interview and his

>vision got blurred, and he turned to talk to my sister in law ( his wife)

>and his speech was so slurred she couldn't understand him... they got him

to

>the hospital his bs was 545 ( this time last year when he was rushed to the

>er it was 595 and they didn't admit him) at least this time the hospital

>admitted him. and a new doctor decided to start him on shots they got it

>doown and he is at hoime now.. I have only done research on non insulin

dep.

>DM not insulin so any websites that you knwo are good send them my way

>please...

>Also the doctor wants him to change meters to a profile, I have one but I

am

>not willing to give it up and dh and me can not afford to buy him a profile

>nor can my bil and his wife afford one right now.. so if anyone you know

any

>really good mail in trade ins let me know.. thanks.. heheh or if you have a

>profile you don't want ..

>hugs best wisges..

>KImberly dawn

>

>PS. i had a 3 hr gluclose test mid feb and it came back 100% OK isn't that

>cool

>

>

>------------------------------------------------------------------------

>Did you know that knowledge is power?

>http://www.ONElist.com

>Join a new ONElist e-mail community and strengthen your mind!

[Guest guest]

some of the meters attach to your computer and the results can be sent

directly to your doctor's office. Maybe thats why he wanted him to use a

specific meter?

Meenie

Re: Introduction

>From: Gr8Scot5@...

>

>Hi all - In 's last post she mentioned that her bro-in-law's doc

>wanted him to get a profile ( I am assuming that this is a type of BG

>monitor). With all the talk that has gone on about what kind people use I

>have a question? What is the difference between brands - I mean are they

just

>shaped different - or are some more accurate than others? I know that some

of

>them have different functions i.e. memory and such but since I always write

>my BG down I don't think I would need that. By the way I use a Glucometer

>Elite that I was given at my hospital diabetes class and yes my strips are

>expensive too - tend to run a little less that a buck a strip - but

>fortunately my insurance pays for a great percentage of that. Helen also

>mentioned something about her insulin being " stuffed " what does this mean?

>Thanks - Rebekah

>

>------------------------------------------------------------------------

>Tired of empty chat rooms and out of date bulletin boards?

>http://www.ONElist.com

>ONElist: Making the Internet Intimate

[Guest guest]

Thank you .. i am originally from Hamilton if you know where that is...

i saw you were from cincy and thought i would mention it. i have been living

out here for a little over a year.. i kinda miss cincy but i saw on the news

that you are getting pounded with rain.. and it made me want it to rain out

here.. silly huh??

(sorry for going off topic)

Goldmoon

>

>From: DeeBent@...

>

>Welcome, Suzyn! My name is , I was dx with Type II 2/14/97. I know

>what you mean about trying to adjust. When I was dxd, I felt like someone

>turned me upside down, shook me real hard, then dropped me. It took a

>while

>to really " get the hang of this " . This list has a group of great people,

>and

>a lot of experience. If you have questions, ask away! No question is dumb

>here!

>

>Good to have you!

>

> in Cincinnati

>

>---------------------------

[Guest guest]

Welcome Beth and family,

We are all here to learn together. There is so much unknown about

this disease.

How is your mom doing?

We can learn more from each other than I think the doctors can tell

us. We are actually dealing with this disease first hand. Maybe we

can help " them " figure out what the commonalities are between us and

help cure this thing.

It's very frustating to me that " they " have been working on this

disease for over 30 years and haven't come very far.

Anyhow, welcome to our group and we look forward to your input.

Leanne

>

[Guest guest]

Thanks, Leanne. My mom is holding her own. As I said, she was diagnosed about

five years ago after having trouble sporadically throughout her life

w/pneumonia, productive chest colds, etc. She was a smoker but quit in 1966.

After diagnosis, she was really asymptomatic until March 2002. While on a

business trip in CA, she became very ill and was diagnosed w/internal bleeding.

She was stabilized but it was at that time that she began oxygen as needed. In

July 2003, she was readmitted to the hospital with a pneumonia that was severe.

After that, she was on oxygen full time. She spent some time in the hospital in

August of this year and is now housebound (except for trips to the

pulmonologist). She is currently taking daily 150 mg. of Imuran, 15 mg.

prednisone, 40 mg. protonics, and uses 5 liters of oxygen around the clock. As

tough as this has been, my mom has an amazing sense of humor and perspective.

She is truly remarkable. Even though she doesn't do the " computer thing " , I'm

going to read her your other correspondences over the phone so she can hear how

others are doing. She's pleased that I've joined your group. Thanks again for

allowing me in!

>

> Welcome Beth and family,

>

> We are all here to learn together. There is so much unknown about

> this disease.

>

> How is your mom doing?

>

> We can learn more from each other than I think the doctors can tell

> us. We are actually dealing with this disease first hand. Maybe we

> can help " them " figure out what the commonalities are between us and

> help cure this thing.

>

> It's very frustating to me that " they " have been working on this

> disease for over 30 years and haven't come very far.

>

> Anyhow, welcome to our group and we look forward to your input.

>

> Leanne

> >

>

[Guest guest]

Hi, Im new to this diagnoise myself and just started my predizone , Im in my 3rd week and also trying to boost up my imune system with natural herbs............ any luck with that ? minis1952 wrote: I'm not sure I'm following the correct protocol but I'm anxious to join your group. My name is Beth, I'm 38 years old, and am married w/ four children. My mom, Joanne (age 75), was diagnosed with IPF about 5 years ago. We have a great support system in place but I've finally hit the point where I'd like to speak to other people living with the same disease. Hopefully, I'll be an asset to your forum since we've been living w/this for so long and I'd like to learn from your experiences as well. Thanks.

[Guest guest]

>

> Greetings to all:

>

> I am

>

> Peaks Island Maine

>

> 66

>

> Diagnosed with IPF June 05

>

> Rehab? not sure what this is or where to find out about it. Have

not been told about it by my Dr. Can any of you tell me more about

this?

>

> support group: just joined this one. Not sure if there is one here

in Maine

>

> stopped smoking 35 years ago. No cigarette but pipe and cigar, and

not often.

>

> My wife is the best support I can and will have.

>

> 3 grown " kids " and 2 granddaughters

>

> have 2 cats and a dog. always have had cats and several dogs.

Raised bantam poultry for shows in state fairs, for about 30 years.

stopped that 4 years ago

>

> Spare time? Working on an addition to our house. Doing wood work,

painting, floors, gardening, raising orchids. Will get back into my

last business of antique clock repair as soon as I get my shop set up

in the addition to the house.

>

> Treatment status? I have been admitted to a clinical trial on

interferon gamma-1b. have been taking the shots 3 times a week for

the last 3 weeks and will continue for 2 years.

>

> Is anyone else on this trial?

>

> Thanks

> Dave

Hi Dave,

I am taking the same treatment that you are taking.

have been on it for about 2 months or a month and a half.I live in

Kentucky. Was diagnosed in July 05. also on liquid oxygen when

active.

Don't know if I can help you, but I will try.

thanks Ann

>

[Guest guest]

Dave,

My name is Arlen Oakes, and I was just diagnosed with IPF a month ago, so thing have been coming at me pretty quickly. The whole thing is a little confusing, to say the least. I was diagnosed at the Chicago Westside VA hospital, and they suggested I apply for the Inspire trial at the University of Chicago. I haven't seen them as yet, but have taken them all my labwork and biopsy samples, and have an appointment for an evaluation. I'm still trying to decide if it's better to go with the drug trial, or try to get a transplant. I know that's a remote possibility, but the prospects of help from the trial aren't too good either. It's all pretty confusing right now, but I'm hoping things will settle down a little.

I was a heavy smoker, but haven't had one in over 25 years. I'm retired from the USN, and spent my time there on nuclear submarines, but the air on them is purer than anything we breathe up here in the normal world. I also have spent 32 years in steel mills, but most of my time there was in relatively clean areas. In short, I have no idea what caused this, as they say the cigarettes probably aren't to blame. I've looked all around the house for Kryptonite, but haven't found any yet.

All my best & Good Luck,............Arlen

[Guest guest]

> >

> > Greetings to all:

> >

> > I am

> >

> > Peaks Island Maine

> >

> > 66

> >

> > Diagnosed with IPF June 05

> >

> > Rehab? not sure what this is or where to find out about it. Have

> not been told about it by my Dr. Can any of you tell me more about

> this?

> >

> > support group: just joined this one. Not sure if there is one

here

> in Maine

> >

> > stopped smoking 35 years ago. No cigarette but pipe and cigar,

and

> not often.

> >

> > My wife is the best support I can and will have.

> >

> > 3 grown " kids " and 2 granddaughters

> >

> > have 2 cats and a dog. always have had cats and several dogs.

> Raised bantam poultry for shows in state fairs, for about 30

years.

> stopped that 4 years ago

> >

> > Spare time? Working on an addition to our house. Doing wood

work,

> painting, floors, gardening, raising orchids. Will get back into

my

> last business of antique clock repair as soon as I get my shop set

up

> in the addition to the house.

> >

> > Treatment status? I have been admitted to a clinical trial on

> interferon gamma-1b. have been taking the shots 3 times a week for

> the last 3 weeks and will continue for 2 years.

> >

> > Is anyone else on this trial?

> >

> > Thanks

> > Dave

>

>

>

>

>

>

>

> Hi Dave,

> I am taking the same treatment that you are taking.

> have been on it for about 2 months or a month and a half.I live in

> Kentucky. Was diagnosed in July 05. also on liquid oxygen when

> active.

> Don't know if I can help you, but I will try.

> thanks Ann

> >

>Hi Ann

I guess I reqaly have no imidiate requests.

What condition had you put on Ox. My Dr. told me I was not ready for

that ,which I guess is a good thing. But I realy get out of breath

when I try and work on jobs around the house.

HAve you been getting any of the flue like symptoms from the

injections?

Thanks again for the reply

Dave

[Guest guest]

,

I was diagnosed about a month ago too. I'm a 60 year old male who used to be a heavy smoker, but haven't had a cigarette in 25 years. I'm told smoking doesn't really have anything to do with this damn thing, so it's sure puzzling as to where it came from. Makes me a little bitter, because besides shortness of breath all the time, I feel great (for a geezer).

Makayla is a little boy, or girl? Very pretty name, sounds sort of Hawaiian. Good luck in your fight with this "thing".

All my best,......Arlen

[Guest guest]

Arlen,

Apparently smoking doesn't matter I'm told. I completely understand

the bitterness--been there, still there really. I'm finding out

that I'm younger than the median age group and that really makes me

angry. It's especially frustrating to me trying to keep up with my

daughter and having her already understand that mommy's sick so

sometimes we have to stop in the middle of playing to take a break.

She's been a good sport about it all though. On days I don't feel

well enough to go into work she'll stay home with me and we'll lie

on the couch all day watching movies. Where all her energy goes for

those days I don't know--maybe stored away for a better day.

Mak (Makayla) has a weak muscle in her left leg that causes her foot

to turn in and it trips her when she walks. We do physical therapy

with her and in addition to that we build the muscle up with bike

riding and roller skating. It's exercise for the both of us now.

The doctor wants me to keep up with the exercising so the 1 1/2

miles that we walk every day for her therapy also serve as mine. On

those days I don't quite have the get up and go she'll ride to the

end of the block then circle back and keep doing this over and over

again until we can both cross the street together.

Thank you for your kind words of encouragement, I hope that you and

everyone else here in the group will in turn keep up a good fight

and that we will all get through this together.

>

> ,

> I was diagnosed about a month ago too. I'm a 60 year old male

who used to

> be a heavy smoker, but haven't had a cigarette in 25 years. I'm

told smoking

> doesn't really have anything to do with this damn thing, so it's

sure puzzling

> as to where it came from. Makes me a little bitter, because

besides shortness

> of breath all the time, I feel great (for a geezer).

> Makayla is a little boy, or girl? Very pretty name, sounds

sort of

> Hawaiian. Good luck in your fight with this " thing " .

>

> All my best,......Arlen

>

[Guest guest]

,

Boy, and I thought I had problems! I'm going to try for social security disability myself, and find it encouraging that you got yours in 60 days.

All my best, and good luck,...........Arlen Oakes

[Guest guest]

You didn't sign your e-mail, so I don't know your name. Your reference to the pneumonia vaccine reminded me that I had a shot of it last year along with a flu shot. Seems like that was around the time I started noticing shortness-of-breath. Now I'm diagnosed with IPF. Probably just a coincidence, but it makes me wonder..........

All my best,.....Arlen Oakes

[Guest guest]

My husband was diagnosed with PF in January of this year. We have

struggled to accept this and continued to be overwhelmed and

discouraged. His doctor is of little help and just seems to be

grabbing at straws as to what medicine to give him or just how to

treat this disease. Every time we leave the doctor's office, we both

feel awful. I asked about support groups and he offered no

information. So I found this group by surfing the internet. My

husband is on oxygen 24-7 and we are both startled at the rapid

progression of this disease. It is now so he can hardly walk from the

living room to the kitchen without stopping to rest. As his

caregiver, I am overwhelmed and exhausted with trying to work a full-

time job, take care of house, yard, animals and him, there are days I

feel like just giving up.

I guess I'm searching for ways to help both of us adjust and cope with

this sudden life change.

Carol

[Guest guest]

Hi Carol, I am . 50 years old and diagnosed in 3/06. You're right, going to the doctor appointments has to be the worst. It is always so depressing and so confusing. The disease is progressing very rapidly with me also and it is very scary. Fortunately, this group is wonderful and gives oceans of support. To keep myself sane I am trying to take all the control I can over this disease. I am eating healthier than I ever have and am finding ways to reduce the stress. Are there other family members or friends who can help lighten your load? My brother, sister and sons take turns going with me to the doctors so that it is not so overwhelming for one person. A friend washes my dog-huge help and a fun visiting day! Another girlfriend meets me for dinner once a week so that I have something to look forward to and to get out of the house for something other than a doctor appointment. Prior to

this I was a very independent person and now I am gratefully dividing up chores ( I even have 1 son who vacumes every other day for me) and accepting all offers of help. I don't think I could get through with out it. I will be saying lots of prayers for you that God sends special angels to your rescue. In the meantime, make it easy for yourself. Let the house go a little, use the crock pot and do a few special things for yourself (chocolate, long bubble baths, pedicure). God Bless you- IPF 3/06Carol wrote: My husband was diagnosed with PF in January of this year. We have struggled to accept this and continued to be overwhelmed and discouraged. His doctor is of little help and just seems to be grabbing at straws as to what medicine to

give him or just how to treat this disease. Every time we leave the doctor's office, we both feel awful. I asked about support groups and he offered no information. So I found this group by surfing the internet. My husband is on oxygen 24-7 and we are both startled at the rapid progression of this disease. It is now so he can hardly walk from the living room to the kitchen without stopping to rest. As his caregiver, I am overwhelmed and exhausted with trying to work a full- time job, take care of house, yard, animals and him, there are days I feel like just giving up. I guess I'm searching for ways to help both of us adjust and cope with this sudden life change. Carol

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Carol...I read your frustration and we know you are feeling overwhelmed! I hope you have a strong faith to rely on now. It seems to be the common factor that unites us together. Try just one day at a time not the whole month or year.

It IS hard. It is HARD. My husband is 76 and does the caretaking for me. I have other chronic conditions and we have gradually arrived here, where he now assumes even more. I feel so guilty sometimes. He is always, constantly, gently and kind. Never impatient or short with me and I know it his is faith that strengthens him. I am so lucky.

Hey, it's ok to be tired and overloaded and impatient even with those we love. None of us can afford to stay in the negative though.

Is another Dr. an option for you?

God bless and hugs to you both! Sher ipf 5-06

Introduction

My husband was diagnosed with PF in January of this year. We have struggled to accept this and continued to be overwhelmed and discouraged. His doctor is of little help and just seems to be grabbing at straws as to what medicine to give him or just how to treat this disease. Every time we leave the doctor's office, we both feel awful. I asked about support groups and he offered no information. So I found this group by surfing the internet. My husband is on oxygen 24-7 and we are both startled at the rapid progression of this disease. It is now so he can hardly walk from the living room to the kitchen without stopping to rest. As his caregiver, I am overwhelmed and exhausted with trying to work a full-time job, take care of house, yard, animals and him, there are days I feel like just giving up. I guess I'm searching for ways to help both of us adjust and cope with this sudden life change. Carol

[Guest guest]

Carol,

Bless your heart, I can hear the desperation in your words. Tell us what city and maybe one of us can direct you to a good center or physician. Lousy docs seem to be everywhere. Did your husband go to rehab or is he on any medication except oxygen?

I can imagine how hard all this is with you working, plus having to do outside work, etc. Do you have to take him for doctor visits, testing and so forth.

Please know that there are caregivers in our group who will understand your situation. We will all try to help in any way we can. Stay around and if nothing else, use this as a place to vent. We will understand...we get it!!

Hugs,

Joyce PF 1997>> My husband was diagnosed with PF in January of this year. We have > struggled to accept this and continued to be overwhelmed and > discouraged. His doctor is of little help and just seems to be > grabbing at straws as to what medicine to give him or just how to > treat this disease. Every time we leave the doctor's office, we both > feel awful. I asked about support groups and he offered no > information. So I found this group by surfing the internet. My > husband is on oxygen 24-7 and we are both startled at the rapid > progression of this disease. It is now so he can hardly walk from the > living room to the kitchen without stopping to rest. As his > caregiver, I am overwhelmed and exhausted with trying to work a full-> time job, take care of house, yard, animals and him, there are days I > feel like just giving up. > > I guess I'm searching for ways to help both of us adjust and cope with > this sudden life change. > > Carol>