Question

[Guest guest]

In a message dated 05/14/2002 2:24:47 PM Pacific Daylight Time,

wega2@... writes:

> Also...I feel that sometimes the group just plain gets tired of my e-mails.

>

Absolutely not!!!!! Please don't ever feel that way!

Beth

[Guest guest]

Good question Jeane,

I have wondered this myself many times.

I can only answer for myself on why I comment to some e-mails and

not others. Depends on my mood and how I feel. There have been a

few today (and other days) that I *knew* I should comment on...but

I am having so much stress in my life at this time, (due to dysfunctional

people in my family) that I can't seem to come up with answers ..or

comments that make sense. I don't want to " vent " to the group, because

this isn't disease related. So, I'm just " swingin' thru the trees here.

I'm not even sure what I have just said makes any sense. But, I'm surely

not mad at you for asking.

Also, sometimes when I answer someone, I e-mail them personally, so

that others don't feel I'm taking up too much " space. "

Also...I feel that sometimes the group just plain gets tired of my e-mails.

Those are my reasons.

Your friend, tricia

wega2@...

-- question

I really don't know how to ask this question without someone getting mad at

me, so here goes... Why is it that when a letter is wrote, everyone will

answer and then sometimes only 2 or 3 will answer a letter. Sometimes just 1

will answer. I can understand how a person would feel,like they aren't as

important as others are. Or is it just like I do, if I don't know an answer

or can't help with a question , I don't reply. Thanks Jeane

[Guest guest]

Hi Jeane:

I can think of only one reason and that would be that some

people don't check their mail as often as others therefore some people answer

before others so the others don't bother or they are feeling poorly and don't

feel up to answering. Rest assured though some one will always answer. Take care

now and be PAIN FREE!

We Will Win

Love Y'all

Bob & Carole

Please visit the Stills Disease web site

www.stillsdisease.org

[Guest guest]

I have been a member of the group since late October 2001 and

responding to emails since December. I read them all and I respond

for various reasons. First, I have to have the energy to sit, think,

and type all at the same time.=) Second, I reply if I feel I have

something constructive or important to contribute, like an answer to

a question, or personal experience and so on. Lastly, the person, or

the email / situation may motivate me to respond, even when I feel

very sick myself. I have found that when someone is in trouble,

everyone replys with encouragement. When someone with questions

writes, those with answers or clues respond. Inevitably, someone will

reply to every email that needs a response.

With the Prednisone decrease issue, I have read that you can decrease

faster if you are at a higher dose, but should not decrease more than

once a month. Also, according to my doctor, once you reach 10 mg of

Prednisone, you never decrease faster than 1 mg per month, and taper

if needed for the last week... as in you are at 9 mg for 3 weeks, and

the last week you alternate 8 mg one day, 9 the next until you stay

at 8 for 3 weeks. It is the way I have decreased and did good, till I

got stuck at 9 due to fatigue, fevers and pain. If all goes well,

once I am stable, I can start decreasing again, but it will take 9-12

months to get off entirely.

So far, this is the only email I have responded to today because I am

not feeling well myself. The reason? I did not want you to feel there

is any partiality here. I really don't believe there is. We all love

each other, and worry about each other. Give it a little time and you

will see what I mean. Just reply yourself when you can, for whatever

reasons. We all understand. Now, I am going back to bed for yet

another nap. Hope all here are safe and smiling.

Caroline

> I really don't know how to ask this question without

someone getting mad at me, so here goes... Why is it that when a

letter is wrote, everyone will answer and then sometimes only 2 or 3

will answer a letter. Sometimes just 1 will answer. I can understand

how a person would feel,like they aren't as important as others are.

Or is it just like I do, if I don't know an answer or can't help with

a question , I don't reply. Thanks Jeane

[Guest guest]

Hi Jeane,

good point. I can only answer on my behalf as I too have noticed this. I

usually only respond to emails when I can actually answer them or if the person

is very distraught and I feel that I can comfort them in some way. Sometimes

however, I might be very sore or extremely exhausted from the meds or disease

and the most I can handle is to only read the emails but please know that a

little prayer is said to everyone that I am unable to answer.

Also, something that just came to mind is that quite often I will respond to

that particular person via their personal email so as not to clog up the list

too much so this could be another reason why you might not see as many responses

to an email when actually there might be.

I hope this helps in some way.

Marilyn

mhogg69@...

question

I really don't know how to ask this question without someone getting

mad at me, so here goes... Why is it that when a letter is wrote, everyone will

answer and then sometimes only 2 or 3 will answer a letter. Sometimes just 1

will answer. I can understand how a person would feel,like they aren't as

important as others are. Or is it just like I do, if I don't know an answer or

can't help with a question , I don't reply. Thanks Jeane

[Guest guest]

Dear Jeane,

your question is most validated and I am glad that you asked it. In my case...I

tend to answer a lot of e-mails personally to that persons e-mail address if I

have it in my address book, but most of the times, I try to reply to a lot of

friends questions and comments, but one has to remember, that this disease puts

us all at different levels. I for instance have had this for about five years,

but was just diagnosed almost two years ago. A lot of people here have had this

disease a lot longer and are in a higher level of this disease than I am.

Although I have had a lot of serious " flares " and I take a whole medicine

cabinet worth of meds....a lot of my friends here are dealing with this disease

on a much more intense point. A lot of people here are on Remicade or MTX or

stronger meds than I am, so at times, a lot of questions will come up about meds

or symptoms accompanying the med, and I feel that people taking the same meds

and facing the same questions and answers makes it a lot easier to answer. I am

not on these drugs, so the people that are on the same drugs or have the same

symptoms tend to communicate with each other more if the subject arises. At

times I want to talk about the " subject " being discussed, but find myself

dragging behind because I am not at that level of Stills Disease like others. I

am still able to work also, where a lot of friends here cannot because the

disease has riddled them so much, so I find my time is limited and being a

single mom of two young boys definitely takes up my time after work well until

they are tucked into bed, and I am in no way saying that the people here that

are home with this disease have more time, it's just that my time is very

limited and I try to give 110% to this group when I can, because they have given

me the gift of " hope " for a brighter future and the will to hold a positive

attitude. Without them, I think that I would of been in a serious world of

" depression " . This group is just so blessed with such incredible people, that

I think it's wonderful that so many take the time to respond or just sit back

and listen and learn. Sometimes although I may not participate in the

conversations, I love to read all the information about new meds or information

about Stills. Everyone here has been so helpful. I LEARN so much from them

about their pain, symptoms, fears, tears and hope. It is comforting to here

others discuss the same symptoms and listen about meds that I possibly might

have to go on in the future. Sometimes it can be very confusing for me, so I

sit back and listen because I know others are feeling the same feelings I am.

Everyone here is SO important. This is why we are all here. We are facing this

together, as a family. I feel that there are a lot of people whom take

complete comfort in just reading about this disease and it might be very tough

for them to speak to the group because of very emotional feelings that they

might be going through, and I am sure when they see a lot of letters with same

symptoms and questions, they want to respond, but take more comfort in just

listening and learning, and I know for myself, that some days...it's just very

hard to type for a long time or even a short time. I just don't have the

strength to sit up even though I want to participate. Hope this helped some.

Be well.

Love, Sue #2

[Guest guest]

Caroline,

I just read your e-mail and I am sending you good thoughts friend. I am so

sorry that you are not well friend. I think of you often.

Love, Sue #2

[Guest guest]

Hi Jeane,

Regarding answering the letters. I answer if I feel I can either make a

valid point or useful imput which as I'm still learning, is not very often

I'm afraid. Also in my case, I am still getting to recognise and know folk.

When it comes to medication questions, etc., whilst I know a fair amount

about drugs because of my previous job, I do not know what is safe or unsafe

to take with Stills and therefore tend not to enter into the fray on that

subject.

Hope this helps

Take care

a, Oliver and the clan

[Guest guest]

Jeane,

I didn't receive the first message with your original

question. But I am getting a feel for what you asked

based on what I am reading from others.

I often wonder this myself...why didn't anyone reply

and yet some other post will get many replys. Then I

think of the hundrends of posts (literally) that I

didn't reply to but I think and ponder over for a long

time. I would hate for anyone to think poorly of me

for not replying to a message and I always hope that

each of them understand that It's just that I'm not up

for it. I used to try to respond to every post and it

was too much for me to do.

Like now...I'm am starting to feel poorly and need to

rest but there are so many messages I want to reply

to. So many sweet things people have said to me and

questions I want to try to research answers for and

yet I can't reply. I take comfort in knowing that

everyone here understands.

Much Love to Everone Here!!! I love you all and I am

sorry if I ever didn't reply to a message that you put

your heart and soul into writing. I just can't always.

But I read them and feel the love and I hope you feel

it too even if I don't reply.

Love and Hugs, Kim

Dennis & Tricia Looker wrote: Good question Jeane,I

have wondered this myself many times.I can only answer

for myself on why I comment to some e-mails andnot

others. Depends on my mood and how I feel. There have

been afew today (and other days) that I *knew* I

should comment on...but I am having so much stress in

my life at this time, (due to dysfunctionalpeople in

my family) that I can't seem to come up with answers

...or comments that make sense. I don't want to " vent "

to the group, becausethis isn't disease related. So,

I'm just " swingin' thru the trees here. I'm not even

sure what I have just said makes any sense. But, I'm

surelynot mad at you for asking. Also, sometimes when

I answer someone, I e-mail them personally, so that

others don't feel I'm taking up too much

" space. " Also...I feel that sometimes the group just

plain gets tired of my e-mails.Those are my

reasons.Your friend,

triciawega2@...-------Original

Message-------From: Stillsdisease@...:

Tuesday, May 14, 2002 15:53:59To:

stillsdisease@...:

questionI really don't know how to ask this question

without someone getting mad atme, so here goes... Why

is it that when a letter is wrote, everyone willanswer

and then sometimes only 2 or 3 will answer a letter.

Sometimes just 1will answer. I can understand how a

person would feel,like they aren't asimportant as

others are. Or is it just like I do, if I don't know

an answeror can't help with a question , I don't

reply. Thanks Jeane

[Guest guest]

Dear Jeane,

If I could I would answer everyone's emails. For awhile now because of

being tired or not feeling well I certainly don't post as often as I feel I

should or would like to. I also tend to email people personally more so

then the whole group in less I feel it might be beneficial to the entire

group. Other times others have answered a question the same way I would

have.

Most days I am lucky to read the messages every day. I do read most of the

messages but I may only read a few one day and more the next, etc... I was

more involved with the group when I wasn't working F/T. I could easily and

I do at times feel guilty for not being as involved as I would like. I am

trying to stop the guilt.

I hope and I am pretty sure that everyone understands that we get tired,

were sick or have time restraints that make it difficult to post a lot of

the time. This is how I see it any way. I do pray regularly for all of us

and I think about all of the members regularly. The group and everyone in

it has a special place in my heart. The group has helped me so much. So if

I miss an important email message which I do I hope the person knows it

wasn't intentional and that even if I didn't email the person I do care

deeply for them and everyone in the group and I only want the best for

everyone.

Actually as much as this illness takes from us I often am amazed at how much

email does go through this group. I hope this helps.

Love,

jatw@...

[Guest guest]

Hi Pattie,

is currently receiving allergy shots. He is severely allergic, and

the last time he was on them he went the entire time without any sinus

infections. It was very remarkable for him. We had to stop when his throat

infections became too chronic and severe--they won't give the shots if the

patient is ill at all. So, I had a small window of opportunity here, and we

thought we would give it another try. First of all because it is summer, and

Bri doesn't have as many infections. And secondly, his tonsils are gone.

Last but not least, he has T-tubes in that should last for a while. His

allergist knows he is a PID kid, and both he and 's Ped have agreed that

this is a good therapy to try on.

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

Sandi, thank you for sharing this info with me!

pattie

[Guest guest]

Hi Vicki... Our group is made up of lots of different illnesses and

diagnoses... We have others on here that have cancer, tumors, MS, CP, SLE,

Mollarets Meningitis, Pituary Tumors, viral cardio myopathy and so the list

goes on... We would sure try and help her if she will let us... Just being

able to talk is a big part of it... Trying to get past the fear of what is

happening is hard, so having others around that can understand your pains and

fears help... What type of brain cancer does she have??? How are you coping

with it??? Are you new to our list??? If so welcome, hope to see you or

your friends posting...

((( Welcoming and Helping Hugs )))

Helen

{\o/} {\o/} {\o/} {\o/} {\o/} {\o/} {\o/}

*/*\* */*\* */*\* */*\* */*\* */*\* */*\*

RAINBOW ANGELS TO

PROTECT YOU !!

[Guest guest]

Shirley, When you purchase your products do you not get an ingedient list

with them? I would insist on this because how else are you going to be able

to list your ing. on your labels. You will be able to tell also if a

preservative has been added to it. You can add other things besides frag. &

color but you have to know what's in it first. Sandy

.. When you purchase gels or bath bases,

> etc., premixed do you have to add anything other than color and EO?

> I'm assuming that the preservatives have already been added.

[Guest guest]

Thanks, Sandy this will be my first purchase.

Shirley Ann

[Guest guest]

Hey , I was thinking that you had gastric bypass surgery a while back,

did you or am I thinking of someone else? If so was it before or after your

diagnosis with stills?

[Guest guest]

,

I had gastric bypass surgery in March 2000. However, my symptoms started in

October 1997. I went on total disability in October 1999.

My gastroenterologist says the surgeon doing my bypass should have noticed that

my GI system was already screwed up when he was in there, but apparently didn't.

My GI symptoms were first thought to be due to the surgery; however, since

they've outlasted any surgery-related side effects, they finally looked harder

and found that I had been having problems before the bypass.

Oh, joy...just one of my many " conditions. " I feel like a guinea pig every time

I go to the University of Wisconsin-Madison Hospitals and Clinics because I'm

" such a complex and special case. " That and the fact that they're a teaching

hospital. LOL! So, I'm trying to TEACH the med students, interns and residents

HOW to be NICE to their PATIENTS and don't overlook their feelings while they're

looking at the symptoms. At least I'm trying to do that!

Happy day!

Jul

(lilac_rose@... )

Re: question

Hey , I was thinking that you had gastric bypass surgery a while back,

did you or am I thinking of someone else? If so was it before or after your

diagnosis with stills?

[Guest guest]

I thought that once you had the bypass you would have he malabsorption

problems for the rest of your life. that is why you have to take vitamins

for the rest of your life. this surgery confuses me. my best friend just

had it done in January, she's lost 140 lbs so far but still has 100 more to

lose. I just feel so bad for her because it changed her entire life as far

as her eating. she's glad she is losing weight but she really hates what it

has done to her body.

Jen

[Guest guest]

,

No, actually, the malabsorption syndrome was a complication of the older

versions (much more radical) of gastric surgeries. The one I had done is called

a Roux-en Y gastric bypass. This is the only gastric bypass surgery that's been

done here since 1974. I'm a real rare exception that developed this after the

surgery. Of course, my GI doc believes I have this syndrome more because of my

GI system being messed up before the bypass surgery.

It takes about 1-1/2 to 2 years for the body to " readjust " to its new weight set

point. Healing is usually complete by 2 to 2-1/2 years. Tell your friend to

hang in there! I know there are some drawbacks - like I have enough skin for

another small person to fit into! LOL! A person's body can only reabsorb or

return it's elasticity, to a certain extent. After that, you have to have

cosmetic surgery to pull up, tone and smooth out the skin.

Tell your friend that things will definitely get better for her! I would still

to this day, have the surgery done, even with all the " other conditions. "

All my heart,

Jul

(lilac_rose@... )

Re: question

I thought that once you had the bypass you would have he malabsorption

problems for the rest of your life. that is why you have to take vitamins

for the rest of your life. this surgery confuses me. my best friend just

had it done in January, she's lost 140 lbs so far but still has 100 more to

lose. I just feel so bad for her because it changed her entire life as far

as her eating. she's glad she is losing weight but she really hates what it

has done to her body.

Jen

[Guest guest]

- that's what Les does. They say that depending on how bad the response

is it could be that the Ig levels are

" hollow " . There are other families on the list who have this problem. They

have told Les that it is up to him when to

start IVIG but for now he is doing prophylactic antibiotics. He has problems in

his chest and chronic sinusitis (just

finished Avalox - which did nothing and is now on Cefzil for 10 days).

Hope that helps. it's our little tid bit.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Hi, , 1/4 teaspoon hydrogen peroxide per quart of soak water usually kills

any spores on the wheat. Some people use 1 teaspoon Citric Acid per quart of

water, but I find that is more of a bacterial deterrent and a bit more

expensive. Hope this helps,

question

Hello everyone,

I am new in this group..

Can someone email me back giving me info about how to

grow wheat grass WITHOUT midew..or mold!!!. Do we need

to buy extra fancy kit to grow them???.Thanks a million!

__________________________________________________

[Guest guest]

Wheat grass or any other sprout needs light and air and a " clean " soil or

tray. That is all! So start out with clean seed, a growing medium like

Supersoil from Walmart, clean trays and you will have clean ,mildew free

wheatgrass. The complex growing systems don't work any better than the

elegantly simple ones!

I grow upto three crops of 4-5 inch wheat grass in a standard florist

growing tray(fine holes) on ventilated shelves on my porch. It is good,

makes excellent juice. The benefits of it have been hyped to the point

that it is a televison commercial nightmare but it is a good source of

chlorphyll and green stuff. Wheat berries are not expensive so go for

it!

TeeJay.

[Guest guest]

TeeJay, unfortunately, there is a mold spore that may proliferate on the surface

of the wheat under certain storage conditions, and no amount of beneficial

growing conditions will deter the mold unless certain measures are taken.

Sproutingly,

Re: question

Wheat grass or any other sprout needs light and air and a " clean " soil or

tray. That is all! So start out with clean seed, a growing medium like

Supersoil from Walmart, clean trays and you will have clean ,mildew free

wheatgrass. The complex growing systems don't work any better than the

elegantly simple ones!

I grow upto three crops of 4-5 inch wheat grass in a standard florist

growing tray(fine holes) on ventilated shelves on my porch. It is good,

makes excellent juice. The benefits of it have been hyped to the point

that it is a televison commercial nightmare but it is a good source of

chlorphyll and green stuff. Wheat berries are not expensive so go for

it!

TeeJay.

[Guest guest]

Hi, . I read your suggestion for using the hydrogen peroxide soak

water for wheat and was wondering if it's also a good idea to use this to

deter mold ( & /or anything else undesirable) when growing any kind of

sprouts. Would appreciate feedback from anyone who knows. THANKS! Miriam

>From: " cynthia-wilson " <cynthia-wilson@...>

>Reply-

>< >

>Subject: Re: question

>Date: Wed, 28 Aug 2002 13:30:25 -0500

>

>Hi, , 1/4 teaspoon hydrogen peroxide per quart of soak water usually

>kills any spores on the wheat. Some people use 1 teaspoon Citric Acid per

>quart of water, but I find that is more of a bacterial deterrent and a bit

>more expensive. Hope this helps,

> question

>

>

> Hello everyone,

> I am new in this group..

>

> Can someone email me back giving me info about how to

> grow wheat grass WITHOUT midew..or mold!!!. Do we need

> to buy extra fancy kit to grow them???.Thanks a million!

>

> __________________________________________________

>

[Guest guest]

Hydrogen peroxide won't hurt you a bit. It also makes a good wash for store

bought produce.

>Hi, . I read your suggestion for using the hydrogen peroxide soak

>water for wheat and was wondering if it's also a good idea to use this to

>deter mold ( & /or anything else undesirable) when growing any kind of

>sprouts. Would appreciate feedback from anyone who knows. THANKS! Miriam

>

>

> >From: " cynthia-wilson " <cynthia-wilson@...>

> >Reply-

> >< >

> >Subject: Re: question

> >Date: Wed, 28 Aug 2002 13:30:25 -0500

> >

> >Hi, , 1/4 teaspoon hydrogen peroxide per quart of soak water usually

> >kills any spores on the wheat. Some people use 1 teaspoon Citric Acid per

> >quart of water, but I find that is more of a bacterial deterrent and a bit

> >more expensive. Hope this helps,

> > question

> >

> >

> > Hello everyone,

> > I am new in this group..

> >

> > Can someone email me back giving me info about how to

> > grow wheat grass WITHOUT midew..or mold!!!. Do we need

> > to buy extra fancy kit to grow them???.Thanks a million!

> >

> > __________________________________________________

> >