Thanks

May 1, 2004

Dear , Thanks for writing. It has been a rough month to say the least.

I thought I was having problems with just the PA, but add asthma that won't

let up to the picture and at times it has been more than I can take. I

will ask the new pulmonary doctor on May 10th about the other medication. I

'm all for anything with less side effects. Did you have problems getting

used to the sleep apnea machine? I'm dreading even the sleep study test

since my sleep is so erratic and I know they put electrodes all over you

with glue. I've got to get my asthma under control before I go or it will

be a nightmare. I think I did so poorly on the oxygen monitor test because

I had a bad night sleeping and my asthma was worse than normal. Hopefully I

don't drop to 79 every night on oxygen because that's pretty low.

Part me knows that the Humira could have damaged my lungs for good, but I

try not to think that way. I'm hoping this is just a long lasting chest

infection or severe allergies that I can't get control of. So I hope I

never need the portable oxygen. It is all so strange. Right now my main

symptoms are shortness of breath, my left leg is still swelling from the

thigh to my ankle, and if I do anything or move my hands get beat red and

burn like crazy. Luckily, the water pills are helping with my leg or the

edema would be killing me by now. They have ruled out a blood clot and

congestive heart failure, but my doctor has no idea what is causing all the

swelling. Have you ever heard of neuropathy causing these kinds of symptoms

in a leg? I don't have diabetes but I have gained weight from all the

predinsone. That's another drug I'd love to get off of, but I can't go

lower than 40mg. I'd be in the ER by the next day. I mean I am wheezing

just typing this email and all I'm doing is sitting.

I think it's great you can still work and I know how hard home health care

can be. Both of my parents had emphysema really bad the last 15 years of

their lives. They both had home health care at the end and those girls were

our angels. They helped us all so much. I was luckily enough to live

next-door at the time and could take care of my mother so we didn't have to

put her in a nursing home. But they made it even more possible. I didn't'

have PA then or if I did I didn't realize it. I had been diagnosed with

fibromyalgia then, but it was pretty much under control.

Thanks so much for your advice and for taking the time to write. It helps

to know you aren't alone. Take care, Fran

Re: [ ] Digest Number 2384

Fran:

Hope your feeling better soon. I know the CPAP machine for my sleep

apnea helped so much I didn't need oxygen with it. Also, (as a respiratory

therapist)Levabuteraol has less side effects than Albuterol (Proventil).

Its

like they took the bad stuff out & left the main ingredient. I do home

health

part-time, after 10 years in the hospital, I'm blessed I can work part-time.

If

you do have to continue oxygen, check out Helios. This is a liquid oxygen

3.5l lbs. & you can carry it just like a purse. Hope this helps some. I

know

everyone has been so good to me.

Love & Prayers

May 18, 2004

Thanks everyone for the Prayers, Best wishes and Thoughts that will go with me.

June 7, 2004

-Hi Rosemary,

Just wanted to say I am sorry you are having a tough time of it. I

have been there too. I hope that writing to us and a good cry have

helped you feel better.

take Care,

Marti

-- In , " rosemary_croft "

<rosemarymc@n...> wrote:

> thanks to all,

> I DIDN'T THINK I WAS IN REMISSION BUT THIS DESEASE IS SOOOO

> YOU KNOW (DAMN HARD)CONFUSING, I HATE IT ,( WORK THOUGHT I WAS

> BECAUSE I HAVENT TAKEN ANY SICK DAYS FOR AWHILE)SO I HAD TO TRY TO

> EXPLAIN IT TO WORK. SEE I CUT DOWN ON WORK (HOMECARE) AND THEY

> THOUGHT I SHOULD COME BACK FULL TIME BUT I CAN'T , YES THIS DESEASE

> IS VERY DEPRESSING IT SEEM LIKE YOU ALWAYS GOT TO EXPLAIN YOUR

> SELF,IM SORRY I CAN'T BECAUSE/OH I LOVE TOO BUT I CAN'T BECAUSE/I

> CAN'T DO THAT /CAN'T DO THIS . IT NEVER ENDS AND IM SICK OFF IT MY

> HUSBAND DON'T UNDERSTAND AND HE DON'T TRY TOO AND HE DON'T HELP

ME .

> SORRY I GUESS I DO NEED SOMEONE TO TALK TOO ,BUT SOMETIMES I GET SO

> TIRED OFF TALKING , I FEEL LIKE IM ALL THE TIME COMPLAINING SORRY

BUT

> THE WEATHER IS BAD I CAN'T, WHEN SOMEONE ASK YOU " HOW ARE YOU "

WHAT

> DO REALLY SAY OH IM FINE(WHEN YOUR NOT BUT YOU FEEL YOU CAN'T TELL

> THEN THE TRUTH CAUSE THEN YOUR COMPLAINING )AND THEN COMES (OH

THATS

> GREAT THEN YOU SHOULD DO THIS AND DO THAT . THEN YOU GOT TO

RETRACK

> WHAT YOU JUST SAID AND TELL THEM HOW YOU REALLY FEEL AND YOU FEEL

> LIKE A FOOL AND HERE YOU RAE COMPLAINING AGAIN , IF YOU DONT LOOK

> SICK OR ACT SICK THEN THEY THINK YOUR WELL AND YOU FEEL GULITY AND

SO

> ON IT GOES WERE DOES IT END AND HOW DO YOU GET BUY , WHAT DO YOU

> DO , HOW DO THEY UNDERSTAND WHEN YOU DONT. I HATE WHAT THIS DESEASE

> DOES, LOOK WHAT IT DOES TO YOUR LIFE OH IM SORRY IM VERY SAD TODAY

> (CRYING)

June 7, 2004

Hi Rosemary,

I am sending hugs your way!!

I sure understand how you feel, and venting to this wonderful group of

people sure is a great help. It is great to be able to be in contact with

people who have the same problems and situations.

I know how tiring it can be just to try to explain to people how you feel,

and it is not " complaining " , but an honest to goodness valid feeling.

Hope you have a better day tomorrow,

Hugs

June 7, 2004

Rosemary,

There is a website called http://www.butyoudontlooksick.com/ it was

founded by a woman with lupus, she created the spoon theory to try

and explain to friends, family members, coworkers ect how dealing

with chronic pain can affect someone's life. It really helped me to

explain to those I know how I feel. I have gotten on a good remedy

of meds and my pain level has decreased greatly although i'm not

pain free by any means. Good luck and feel free to vent anytime.

Keli

> thanks to all,

> I DIDN'T THINK I WAS IN REMISSION BUT THIS DESEASE IS SOOOO

> YOU KNOW (DAMN HARD)CONFUSING, I HATE IT ,( WORK THOUGHT I WAS

> BECAUSE I HAVENT TAKEN ANY SICK DAYS FOR AWHILE)SO I HAD TO TRY TO

> EXPLAIN IT TO WORK. SEE I CUT DOWN ON WORK (HOMECARE) AND THEY

> THOUGHT I SHOULD COME BACK FULL TIME BUT I CAN'T , YES THIS

DESEASE

> IS VERY DEPRESSING IT SEEM LIKE YOU ALWAYS GOT TO EXPLAIN YOUR

> SELF,IM SORRY I CAN'T BECAUSE/OH I LOVE TOO BUT I CAN'T BECAUSE/I

> CAN'T DO THAT /CAN'T DO THIS . IT NEVER ENDS AND IM SICK OFF IT

MY

> HUSBAND DON'T UNDERSTAND AND HE DON'T TRY TOO AND HE DON'T HELP

ME .

> SORRY I GUESS I DO NEED SOMEONE TO TALK TOO ,BUT SOMETIMES I GET

SO

> TIRED OFF TALKING , I FEEL LIKE IM ALL THE TIME COMPLAINING SORRY

BUT

> THE WEATHER IS BAD I CAN'T, WHEN SOMEONE ASK YOU " HOW ARE YOU "

WHAT

> DO REALLY SAY OH IM FINE(WHEN YOUR NOT BUT YOU FEEL YOU CAN'T TELL

> THEN THE TRUTH CAUSE THEN YOUR COMPLAINING )AND THEN COMES (OH

THATS

> GREAT THEN YOU SHOULD DO THIS AND DO THAT . THEN YOU GOT TO

RETRACK

> WHAT YOU JUST SAID AND TELL THEM HOW YOU REALLY FEEL AND YOU FEEL

> LIKE A FOOL AND HERE YOU RAE COMPLAINING AGAIN , IF YOU DONT LOOK

> SICK OR ACT SICK THEN THEY THINK YOUR WELL AND YOU FEEL GULITY AND

SO

> ON IT GOES WERE DOES IT END AND HOW DO YOU GET BUY , WHAT DO YOU

> DO , HOW DO THEY UNDERSTAND WHEN YOU DONT. I HATE WHAT THIS

DESEASE

> DOES, LOOK WHAT IT DOES TO YOUR LIFE OH IM SORRY IM VERY SAD TODAY

> (CRYING)

June 8, 2004

Hi, Rosemary,

I'm so sorry you are having to deal with this. I don't have PA but my husband

does.

I have fibromyalgia. But I wanted you to know that I'll be praying for you.

in Va.

thanks to all,

I DIDN'T THINK I WAS IN REMISSION BUT THIS DESEASE IS SOOOO

YOU KNOW (DAMN HARD)CONFUSING, I HATE IT ,( WORK THOUGHT I WAS

BECAUSE I HAVENT TAKEN ANY SICK DAYS FOR AWHILE)SO I HAD TO TRY TO

EXPLAIN IT TO WORK. SEE I CUT DOWN ON WORK (HOMECARE) AND THEY

THOUGHT I SHOULD COME BACK FULL TIME BUT I CAN'T , YES THIS DESEASE

IS VERY DEPRESSING IT SEEM LIKE YOU ALWAYS GOT TO EXPLAIN YOUR

SELF,IM SORRY I CAN'T BECAUSE/OH I LOVE TOO BUT I CAN'T BECAUSE/I

CAN'T DO THAT /CAN'T DO THIS . IT NEVER ENDS AND IM SICK OFF IT MY

HUSBAND DON'T UNDERSTAND AND HE DON'T TRY TOO AND HE DON'T HELP ME .

SORRY I GUESS I DO NEED SOMEONE TO TALK TOO ,BUT SOMETIMES I GET SO

TIRED OFF TALKING , I FEEL LIKE IM ALL THE TIME COMPLAINING SORRY BUT

THE WEATHER IS BAD I CAN'T, WHEN SOMEONE ASK YOU " HOW ARE YOU " WHAT

DO REALLY SAY OH IM FINE(WHEN YOUR NOT BUT YOU FEEL YOU CAN'T TELL

THEN THE TRUTH CAUSE THEN YOUR COMPLAINING )AND THEN COMES (OH THATS

GREAT THEN YOU SHOULD DO THIS AND DO THAT . THEN YOU GOT TO RETRACK

WHAT YOU JUST SAID AND TELL THEM HOW YOU REALLY FEEL AND YOU FEEL

LIKE A FOOL AND HERE YOU RAE COMPLAINING AGAIN , IF YOU DONT LOOK

SICK OR ACT SICK THEN THEY THINK YOUR WELL AND YOU FEEL GULITY AND SO

ON IT GOES WERE DOES IT END AND HOW DO YOU GET BUY , WHAT DO YOU

DO , HOW DO THEY UNDERSTAND WHEN YOU DONT. I HATE WHAT THIS DESEASE

DOES, LOOK WHAT IT DOES TO YOUR LIFE OH IM SORRY IM VERY SAD TODAY

(CRYING)

June 8, 2004

Hi Rosemary,

I wish I could say something that would help you but there isn't much I can

say except that I and probably most if not all of the others will know exactly

what you mean. It is true that when someone asks how you are your natural

reaction is to give the standard answer, " Fine " when you are not in any way

" Fine. " I have said this before on this list. When I do that my wife always

says to me " When someone asks how you are, don't tell them your fine when your

not " and she is right because the next thing they usually say is. " Your

looking great! " which again is very annoying when your not feeling great. I end

up

feeling like ranting, " That's because I put on some wait due to the drugs I

am on and/or the fact that I can't run anymore never mind run races. What I

try to say when they ask now is. " Oh just the usual, struggling a bit " and then

smile bravely. If they want to hear anymore they will ask. So then you've

told them how you really are..............Hey but your not complaining.

Hope your feeling better tomorrow. (Or today should I say. I just noticed

the time of your post)

June 8, 2004

In a message dated 6/8/2004 10:04:10 AM Eastern Standard Time,

cubfan23@... writes:

<<WHEN SOMEONE ASK YOU " HOW ARE YOU " WHAT

DO REALLY SAY OH IM FINE(WHEN YOUR NOT BUT YOU FEEL YOU CAN'T TELL >>

I know exactly how you feel. If I have a decent day people say that I seem

too well and laugh that I am not working. My best friend calls me gimpy

sometimes when I am limping and can't walk and people seem to pitty me when I

am having a bad day. I am sick of hearing that I am a poor thing and I am too

young to be this way. On a good day I am sick of people looking at me like

I am making up this condition. It comes down to that song that Rick

sang. Those who remember him and this song will remember the line, " You

can't please everyone so you got to please yourself. "

Janet

June 8, 2004

--- " Oh just the usual, struggling a bit " and then

> smile bravely. If they want to hear anymore they will ask. So then

you've

> told them how you really are..............Hey but your

Hi ,

LOL! You crack me up. I recently experienced the wisdom of your

approach when a friend asked me casually how I was doing....for some

reason I was sort-of honest(minus all the gory details) and said

something like hurting more than usual. She said....oh, well I was

going to ask you to take care of my cat for 5 days but I don't think

you feel well enough. whew! If I had said fine I would have had to

back track and do some explaining.

Take care,

Marti(no n)

June 23, 2004

Hi Nikki,

You have the same geno type as my brother and I. My brother just got

his results after 3 months of treatment and he has no hep c in his

blood! See? Treatment DOES work! So, keep this in mind as you have

the same geno-type and so do I. Having geno-type 1b only makes the

treatment a little more difficult to work. It by no means, means

that it DOESN'T work. The success rates percentages are a little

less, that's all. Remember, you're not alone in here. God Bless

Nikki and we're here when you need us.

Nick

> Nick,

> I just wanted to thank you for all the information you gave to me.

> Yeah it was a little much and hard for me to remeember, but thank

you

> all together. I have geno type 1b so I don't know how well the

> medicine is going to work. It is however nice to know that there

are

> people that I can talk to about this and prepare myself for the

road

> ahead. Again thatnk you and have a blessed day

August 1, 2004

Hi, Margaret. I was told by my husband's doctor to give him a vitamin with no

iron in it. Just thought I'd let you know.

Sue and Gidget

October 20, 2004

Jill, the most difficult thing for a parent is to look at a child, and think

" did I cause this? " I think everyone has felt that at one time or another. I

work with ADHD families, and have for the past 10 years. ADHD is a highly

genetic disorder, so in our cases, it was the " gift that kept on giving " ....with

an apraxic or dyspraxic child, many times we just don't know the cause.

I realized I couldn't change what happened, but I could change what DID happen,

and got busy learning and trying different ways to help my son. Today at 5,

he's pretty much like most 5 year olds, with the exception of his labored

speech. With the intensive therapy I fought so hard to get, I know by the time

he enters Kindergarten in September, although a year behind, he'll be up to par

and ready to go.

Hugs to you.....and blessings to your little one.

~karyn

December 7, 2004

-HI ,

As always, im a day late and a dollar short!!! But I wanted to

welcome you also.

Everyone has given you some great advice so I wont repeat it )))

This place was a godspend to me when we started this journey 20

months ago. Now it is home!!

We are also in MN, north suburbs, Ham Lake. My Son, was dx

in June 2003 ( Onset March 03) with systemic JRA. He was 5 at the

time and is now 7. We see Dr Warshawsky at Childrens Hospital,

Minneapolis and LOVE her!

Good Luck and keep in touch..

Hugs Helen and (7,systemic)

p.s Be sure to check out the JAM ( Juvenile Arthritis March) being

held next March at the Mall of Amercia. and I went last

year and it did a lot to help realise that theres other

kids out there " just like him " . We also met up with some of the

local list memebers from here too!!!! an added bonus!!!!!

-- In , " " <earthmama2k@y...> wrote:

>

> To everyone who has responded to my introduction so far,

especially

> if I didn't respond to you personally, thanks for making me feel

so

> welcome here! I look forward to getting to know everyone and

> learning from you!

>

> Thanks,

>

> , mom to 10 (poly)

January 3, 2005

Thanks for all the articles...Thanks a for your response..it did help

me to understand SED rate....it was interesting to read that problems with

protein may artificially lower SED rate, despite inflammation. I am having

problems with protien metabolism as well.... My Albumin is low. I also appear

to have a Thiamin deficiency ( AKA B-1) Thiamin is needed to process protein. (

I have this despite supplementation of vitamin B-1) These problems may be a side

effect of the weightloss surgery I had 3 months ago as the RNY I had cause some

mal absorption. I feel more optomistic today, now that the holidays are over, I

might be able to get something done.

Faith

-------------- Original message --------------

Faith,

Hopefully has helped you understand the RF. I just had to add

that I DON'T have a lot of obvious swelling or redness, yet my sed

rate is continually high. Most of the time it's in the 60's and has

gone over 100 many times. Yet to look at my joints, they are only

mildly inflamed. Unfortunately the bone erosion is invisible so you

can't see the extent of my damage unless you look at my x-rays.

a

On Sun, 02 Jan 2005 07:06:33 +0000, fmt2002@...

<fmt2002@...> wrote:

>

> Does anyone know how a rheumatoid factor of 487 is classified?

> I believe this is a different type of result than the 1:80, 1:64 etc that is

usually used. ( I think it is a newer type of test for rheumatoid factor) I just

know that when they talk about the ratio titers, they associate different

diseases to different levels of the factor...I have not been able to find

anything about this type of measurement except that <60 is negative. Any input

you might have is appreciated

>

> Also why would a SED rate be normal when a person has obvious signs of

inflammation in multiple joints? ( redness, swelling, severe pain)

>

> Faith

>

January 3, 2005

Faith,

Malabsorption after weight loss surgery is a concern. Have you spoken

to the surgeon about it?

Good natural sources of thiamine include brewer's yeast, organ meats,

wheat germ, oatmeal, whole grains, pork, fish, poultry, nuts, dried

beans and peas, avocado, spinach and cauliflower.

Thiamine is found in the germ and bran of wheat and in the outer

covering of rice grains, so refining grains removes much of the

thiamine. The vitamin is easily destroyed by cooking heat and is lost

in the water used to cook food. Malnutrition can cause the Albumin

to be low because there is not enough protein in the diet for the

liver to make new albumin from. I take liquid Ultra- B vitamins and

wonder if that might be more digestible for you. That is something to

ask your doctor.

a

On Mon, 03 Jan 2005 18:07:01 +0000, fmt2002@...

<fmt2002@...> wrote:

>

> Thanks for all the articles...Thanks a for your response..it did help

me to understand SED rate....it was interesting to read that problems with

protein may artificially lower SED rate, despite inflammation. I am having

problems with protien metabolism as well.... My Albumin is low. I also appear

to have a Thiamin deficiency ( AKA B-1) Thiamin is needed to process protein. (

I have this despite supplementation of vitamin B-1) These problems may be a side

effect of the weightloss surgery I had 3 months ago as the RNY I had cause some

mal absorption. I feel more optomistic today, now that the holidays are over, I

might be able to get something done.

>

> Faith

January 3, 2005

Thanks a... a good suggestion. I have been eating alot of the foods you

mentioned. I am waiting on a call from the surgeons office as to how to proceed.

Thiamin deficiency is a scarey thing ..I think the doctor may start me on

injections for some time until that is stabilized again... the liquid vitamins

may be an option.