Some questions

[Guest guest]

Hi Roni,

> research on scleroderma. My doctor told me he has

> another on penicilimime (sp).

A large study in the US last year (I think) showed that d-penicillamine

not only didn't help scleroderma but in some patients, it accelerated the

course of the disease. And yet they're still using it. I can look around

for the study details if you need it.

>

> He also suggested that I change to Doxy since I've been

> on the mino for a year and wants me to rotate. Is there

> such a thing as brand name doxy like the mino? Will any

> brand do?

>

If you're doing well on the minocycline, there is no reason to change. Dr.

Brown used to rotate the antibiotic every four or five years, but not

after a year. If you're not doing well on minocycline, then changing to

doxycycline would be worth a try. Not sure of the brands as I'm in

Australia.

Chris.

[Guest guest]

the December issue of the Scleroderma Foundation Mag, I believe it was December 2000 with DR Tom Medsger on the front page and a female DR announced that D Pencillamine sp? was considered not effective in the tx of SD..yet the DRs here in Cincinnati, OH still routinely offer it..I looked it up in the Mosbys Nursing Drug Reference and some of the side problems associated with usage were, among others, fibrosis of the lungs...just some addtional info for everyone..Debb

[Guest guest]

Roni, just posted re the D Pen question and wanted to drop you a short note Re SD...I see Dr Whitman in Watchung, NJ, very exp DR with the AP...re the Dhea, supplementation has helped some women with SD...but please be aware it is counterintuitive if you have breast issues..I have a couple of areas the DRs are watching closely and all my research indicates that Dhea is not prescribed for anyone with a history of Breast cancer, cysts, etc..do not mean to assume you are a woman, just wanted to make sure everyone gets this info..Debb

[Guest guest]

> Anyone can recommend which product can boost and strengthen immune

> system?

> Someone mentioned colostrum from Kirkman?

> What comment about this?

I don't feel I can recommend a product.

Some things you can look into for immunity are

echinacea (for " shallow " immunity), astragalus,

reishi mushrooms, maitake mushrooms, shitake mushrooms

(for deeper immunity).

Stuff like garlic, which is anti-viral and anti-bacterial

(and wards off vampires) may help -- but I'm not sure if

it actually is an immune enhancer or just " lightens the

load " the immune system has to deal with.

There are many other herbs in any of the categories

I mentioned (shallow immunity, deep immunity, anti-viral).

I would generally recommend seeing an herbalist skilled in

Chinese herbs, which in many cases means an acupunturist.

Traditinal Chinese Medicine uses fairly non-invasive

methods for diagnosis so this may be something you can

do with a child without unbearable hurdles. Patient

interview, looking at the tongue, and taking pulses (there

are several!) on both wrists are the ones I'm familiar with.

Colostrum--- yeah, that is another direction=== immune factors.

Although I've taken this I don't have much of a feel for where

it fits in. There is also some " transfer factor " stuff people

use.

best wishes,

Moria

[Guest guest]

-

I just wanted to comment on the ST you described below. My son started with an

oral motor therapist at 18 months, the therapist was one of the best for oral

motor/feeding issues and the only reason we got in to see her without waiting 6

months is because they though my son was aspirating food in his lungs, luckily

he was not. Anyways, we went to this therapist, who has her own practice out of

her home and it was the first non-EI therapy we took my son to. Anyways, she

held him done to get him to do things and he cried the whole 45 minutes, but I

kept telling myself maybe he will stop, and the therapist said it can take a few

sessions. Anyway, it took 8 sessions of him crying and not having to be held by

her and after that he respected her and did things no other therapist could get

him to do. He has been seeing her for 18 months now and she has had the

greatest success and impact with him. Her therapy is very structured and he

sits the whole time, every other therapy he goes to

is the reverse and I think he gets more out of the structured environment. Now

my son gets excited to go to this therapist and as soon as he sees her he kisses

her and goes right to the chair she has set up for him. I remain queit and

watch the whole time on the side and I have to say my son has made the progress

he has because of her. So if you are told someone is the best you might want to

rough it out, maybe give yourself 10 sessions, and maybe the child will start to

work the therapist, and may actually end up liking them like my son did.

To comment on your other questions, my son never babbled as a baby, that did not

come till he was 18 months. He has been receiving ST since he was 16 months and

he is 3 and still does not have one single word in his vocabulary. I am very

nervous and frustrated too. I have had him on ProEFA and it did increase his

babble and he is more alert and gets things quicker. I took him off the last 6

weeks and he stopped babbling completely. So now we are back on again because I

know it helps him. We have my son in PROMPT ST, EI ST, sensory integration

therapy, EI OT, EI PT, oral motor therapy, and cranial scarial therapy. I wish

one would pay off and get my son to speak. But like I said he has made progress

overall.

Michele

Petruk <lesliep@...> wrote:

Hi,

I have a few questions for you experienced parents...

My son is 2.1 years old and is still not talking...the only word he says is

" yeah " to say yes. He is on EFA's and has been in speech therapy since he

was about 8 months old. I am starting to worry that he will never speak and

am wondering if any of you have children who didn't really have any words at

this age but did end up talking?

I also am wondering what " specific " type of therapy children with apraxia

need? Someone mentioned that in the last batch of e-mails. I'm not so sure

my SPL is terribly experienced with apraxia and I want to make sure he is

getting the best therapy (and correct type) possible.

I saw some of the post replies to someone who spoke of a speech therapist

who was treating her child really poorly and being very controlling....I had

that experience with a SPL here in town who has a reputation for being " the

best " . She was awful! She would hold my son down and force him to complete

a certain number of repetitive actions that was to her liking, not caring

that he was screaming. And this is a child who ONLY cries when he is hungry,

extremely tired, or hurt. It got to the point that as soon as we walked

into her office he would start crying. I finally came to my senses and

realized that he was not benefiting from the therapy at all, in fact I

thought it was doing more damage then good. It is scary that there are

therapists out there like that!!!!

Tricia --- I saw that you were in North Carolina and was curious where in NC

you live. I am in Charlotte. If you are in the area I would love to get

together!

I just had a phone conversation with my pediatrician (who has become a

friend) and she was saying at my daughter's (who has no disabilities) 5 yr

old check up she will be getting her MMR vaccine. When she had her initial

MMR we ended up in the ER because she became very lethargic and ran a high

fever. Because of that the specialists we take my son to agreed that he

should not have the MMR while he was little, and if we did give it to him,

we should give each part separately. I don't think I am going to give it to

him at all and I am thinking I am not going to give my daughter the 5 yr old

MMR either. My pediatrician made the comment that Measles can be fatal, and

a lot of the hispanic population get it...so now I am worried that I am

putting her (and my son if we don't get the MMR) at risk and I would never

forgive myself if they got sick b/c I didn't have them vaccinated. Anyone

have any advice????

I think those are all the questions for now...

Mom to Jordan, 5 yrs old, 2.1 yrs, XYY male, apraxia, hypotonia,

suspected additional unknown neurological/genetic condition and #3 on the

way!!!

[Guest guest]

> My son is 2.1 years old and is still not talking...the only word

he says is

> " yeah " to say yes. He is on EFA's and has been in speech therapy

since he

> was about 8 months old. I am starting to worry that he will never

speak and

> am wondering if any of you have children who didn't really have

any words at

> this age but did end up talking?

My son is now 12 years old. He was severe dyspraxic when he was

little (although we didn't find out until he was 12). I don't want

to scare you but he didn't talk until really about 10 years old. He

would say a word here and there. He did a lot better once we found

out that he was dyspraxic, because he is now getting the proper

therapy. He is not fully talking yet, but he is progressing.

(Sometimes it seems very slowly).

He has a great OT. She does a lot of motor planning. (He has global

dyspraxia) and oral motor therapy. She is the best OT he has had so

far. His SPL didn't really know to much about dyspraxia, but she is

learning and my son does seem to be improving. There are not a lot

of SLP's around here that really know about it, so I figure as long

as she is willing to learn then that's OK.

Alison

[Guest guest]

She would hold my son down and force him to complete

> a certain number of repetitive actions that was to her liking, not

caring

> that he was screaming. And this is a child who ONLY cries when he

is hungry,

> extremely tired, or hurt. It got to the point that as soon as we

walked

> into her office he would start crying. I finally came to my

senses and

> realized that he was not benefiting from the therapy at all, in

fact I

> thought it was doing more damage then good. It is scary that

there are

> therapists out there like that!!!!

,

Isn't that the truth! I thought what someone wrote about these

therapists coming in and treating our children this way right before

our eyes while we are still numb and overwhelmed from being told

they may have this delay or disorder, etc... makes you wonder how

they'd treat them if we weren't in the room.

>

>

> I just had a phone conversation with my pediatrician (who has

become a

> friend) and she was saying at my daughter's (who has no

disabilities) 5 yr

> old check up she will be getting her MMR vaccine. When she had

her initial

> MMR we ended up in the ER because she became very lethargic and

ran a high

> fever. Because of that the specialists we take my son to agreed

that he

> should not have the MMR while he was little, and if we did give it

to him,

> we should give each part separately. I don't think I am going to

give it to

> him at all and I am thinking I am not going to give my daughter

the 5 yr old

> MMR either. My pediatrician made the comment that Measles can be

fatal, and

> a lot of the hispanic population get it...so now I am worried that

I am

> putting her (and my son if we don't get the MMR) at risk and I

would never

> forgive myself if they got sick b/c I didn't have them

vaccinated. Anyone

> have any advice????

>

,

That is only a decision you can make and one I have a great deal of

ambivalance about myself. I wonder what percentage of children

recover from Measles vs. the percentage that recover (completely)

from Autism? My children were never in day care and had no need to

be rushed through the vaccination schedule like they were. How I

wish I'd known then what I know now. As for your daughter, if you

read the package insert for the MMR vaccine, I believe it advises

not to vaccinate a child who has had a previous vaccine reaction.

These websites should give you more knowledge and guidance. I've

read many parents post on the Autism boards that their child had an

initial reaction, yet not knowing any better they allowed the

boosters and now their children are Autistic. Is it because of the

vaccines? Those parents sure do believe it is. Here are some

websites and links I've collected over the months of researching the

vaccine issue. I haven't personally visited each of these sites, so

you may find some more useful than others. Neither of my children

had a vaccine reaction that I was immediately aware of at the time,

although looking back, my son did become violently ill two days

following his six months check-up which included DTaP. At the time

I was told he had a virus, but after reading some stories of other

parents and parts from the books " What Your Doctor May Not Tell You

About Your Children's Vaccinations " by Dr. Cave and I

think the other one is called " A Shot in the Dark " ? I will always

wonder if he had a virus or became sick from the shots.

The websites are:

www.mercola.com/2001/jan/28/mmr_autism.htm - Specifically about the

MMR Vaccine

www.vaccinationnews.com

www.knowvaccines.com

www.thinktwice.com

www.vaccine-info.com/

www.danasview.net/myvaxop.htm

www.jabs.org.uk/

and #3 on the

> way!!!

As for #3 on the way, there is a great deal of controversy re: the

Hep. B vaccine that they give hours after birth in some cases. I

personally have spoken with some physician friends who chose not to

give the Hep. B vaccine to their babies at all; who give every other

vaccine in a single, thimerosal-free dose spaced out by two months

and who are waiting until after the age of 3 before giving any of

the MMR series which will be givien in single doses divided in time

by about two months per shot. You also need to read the package

insert yourself to make sure it is thimerosal-free b/c just b/c they

are no longer produced, they exisitng stocks were never recalled and

are still out there on the shelves.

KIM

[Guest guest]

Michele,

Thanks for your message --- my son saw this particular SPL for over a

year...things just got progressively worse. Now that he is with a new

therapist he is making much better gains and his sessions are productive.

The original therapist was very helpful in dealing with his feeding issues

(and is her area of expertise) but she just is not good with kids past

that...she was doing many inappropriate things that I didn't realize were

inappropriate until talking to other speech therapists. Anyway, like I

said, he enjoys going to therapy now and participates, so it is much more

productive then him screaming for an hour!

> Message: 4

> Date: Sat, 20 Sep 2003 06:48:35 -0700 (PDT)

> From: Michele Wasikowski <michelewasikowski@...>

> Subject: Re: Some Questions

>

> -

>

> So if you are told someone is the best you

> might want to rough it out, maybe give yourself 10 sessions, and maybe the

> child will start to work the therapist, and may actually end up liking them

> like my son did.

>

>

[Guest guest]

In a message dated 11/15/03 9:00:04 PM Central Standard Time,

PBLeahy8@... writes:

> 1. Has there been differences in outcomes with protocol with

> kids who were labeled " autistic " versus " PDD.NOS " versus " Aspergers? " I

> know we are embracing the label, but I was wondering about outcomes based

> on starting points? It seems as if the kids who were labeled " autistic "

> sometimes respond faster and better to protocol?

That's a good question that probably varies greatly from kid to kid. I'm

still relatively new to so can't really answer that but can say of the

cases

I've followed on this list, other e-mail lists, my child and one friend's

child, there really doesn't seem to be a pattern of who will most benefit that

I've been able to determine (except for possibly viral-related symptoms). Of

course, those who have never done any dietary intervention at all tend to show

an early jump in progress as certain foods are removed while those who have

addressed some dietary offenders would have seen that progress prior to .

Having been on all levels of the developmental scale, I can say that when my son

was much younger and lower functioning what I saw as " major " progress

differed greatly from what I consider progress today. If a child who has never

talked utters a few words, that seems huge while a conversational child who is

focusing a bit better on schoolwork doesn't seem as huge on the surface. The

mechanisms and amount of progress to get them to those two places were probably

very similar but the perception of progress is different.

> 2. parents who are doing the " good enough " diet versus those

> parents who are doing a more " hard-core " DAN type diet. Does it

> seem to make a difference in most kids?

I can't speak for " most " kids but can say that my son went into the

protocol on the gf/cf diet and off of many foods he was reactive to. The few

times we've tried him off of it were not pretty. For him, it does make a

difference. For others, it may not. I'm hoping we can get to the point where

he can

branch back into wheat or other gluten-grains occasionally but don't think

we're there yet. Again, this probably varies greatly from kid to kid. If it's

a

high-reactor kid with high EOS and CDs, then you probably need to be more

stringent on the diet.

> What's the scoop on wheat versus gluten on the labs? Our son came back

> significant for gluten---but less significant for wheat? He came back

negative

> on all other wheats, including barley and oats? So----can I give him

> regular Cheerios for

> breakfast?

>

We've learned to rotate in and out things we try or retry so that he's eating

the " test food " once a week on the same day at first -- if he's ok on that

day and the few days after, we add one more day, etc.

> 3. Do you most of you go back to Goldberg on yearly pilgrimages?

>

I don't think he requires that right now but he has said he'd like patients

to come back regularly -- though I'm not sure how often that means. Our 1-yr

with him will be mid-December but he hasn't suggested we return to CA right now

but he has mentioned " when you come back here " a few times so I assume he'll

want Curt back after awhile.

> The only labs we have been doing since meds started are routine Chem

> panels, hepatic panels and such to make sure meds are not harming him? How

does

> Dr. G. know scientifically if these meds are really helping---aside from our

> phone feedback and emails?

He'll most likely reorder an immune panel soon. He just ran one on my son a

month ago -- about 10 months into .

> >7. WHAT ABOUT SUPPLEMENTS. ARE ALL OF YOU REALLY DOING NOTHING BUT A

> MULTIVITAMIN WITH IRON? THERE SEEM TO BE ALOT OF STUDIES OUT THERE SUPPORTING

> OTHER SUPPLEMENTS. DR. G. SAYS THEY'RE BAD FOR OUR KIDS, BUT WHAT IF THEY

> TRULY HELP AND WE DON'T DO THEM? WE KEEP FEARING THE EVER CLOSING WINDOW OF

> THIS DISORDER.

He does allow/suggest some supplements in addition to the multivitamin on a

case-by-case basis. His recommendations for my son left a few of his

supplements in and he recently added another supplement. I think his main

concern is

possible immune activation as well as very high-dose stuff some folks use. You

have to trust yourself to make the best decision for your own child. It's

good to keep up with all the information out there, in addition to , but

never let fear push you into doing something without fully investigating it

first

and understanding whether it is really right for your kid or not. The window

never closes but it can be blown out for awhile by jumping into too many

things at once and crashing your kids' system.

> 8. Phenols/salicytes? Certain fruits cause issues with our kids?

> How do we test to see if our son has reactions to these.

Try removing them for awhile to see if there is any improvement and/or try

allowing the particular one you're testing once a week on the same day every

week to see if you notice a difference on those days.

Gaylen

[Guest guest]

Hi ,

I think those are great questions, but I don't have an answer for

them

I just wanted to mention about the Calcium supplements, I used to

have to grind up supplements and put in applesauce. There's also

some high calcium breads (but my son isn't gluten free anymore)

I finally just found a chewable calcium supplement with 25% calcium,

some vit D, magnesium and vit C called Rhino Chewable Calcium by

Nutrition Now. I found it in a Whole Foods type Market. My son

thinks it's candy.

For vitamin supp. I like to use Nature Made Essential Balance which

has 50% iron. and a large list of vitamins and nutrients. I don't

know if that would meet your iron needs.

Our son didn't do well on the hard core diet. There are just certain

foods that he needs to stay away from. Although, if his body is

healthy he can process any food okay.

Carolyn

> Hi, here's some more questions to those who can respond. Thanks

in

> advance...

>

> 1. Has there been differences in outcomes with protocol with

> kids who were labeled " autistic " versus " PDD.NOS "

> versus " Aspergers? " I know we are embracing the label, but I

> was wondering about outcomes based on starting points? It seems

as

> if the kids who were labeled " autistic " sometimes respond faster

and

> better to protocol? Our son has never " truly " fit any

category--

> -except hyperlexia (which isn't really a category onto itself I'm

> told.) He doesn't even fit most of the kids categories

either

> with his lab profile. Yet, cutting out dairy definately helped.

Did

> most of the success stories stem from kids with " higher

> functioning " diagnoses or is it really a function of age started

and

> dedication to the protocol?

>

> 2. parents who are doing the " good enough " diet versus those

> parents who are doing a more " hard-core " DAN type diet. Does

it

> seem to make a difference in most kids? I'd hate to go more hard-

> core if it really won't make a dent. Our son is doing fairy well

and

> making strides on the diet we do (pure dairy removed---he still

gets

> trace amounts here and there when we can't be perfect). The wheat

> thing is more 50/50. What's the scoop on wheat versus gluten on

the

> labs? Our son came back significant for gluten---but less

> significant for wheat? He came back negative on all other wheats,

> including barley and oats? So----can I give him regular Cheerios

for

> breakfast?

>

> 3. Do you most of you go back to Goldberg on yearly pilgrimages?

>

> 4. I'm confused. We did all the labs Dr. G. initially requests

> prior to our first appointment back in May 2003. Only his Rubella

> titer was high---with some other small/subtle things that made DR.

G.

> think his " PDD.NOS " stuff was . However, ever since our first

> appointment, we have been doing Valtrex (6 weeks) FAMVIR (Current)

> and now NIZORIL (since Sept). The only labs we have been doing

since

> meds started are routine Chem panels, hepatic panels and such to

make

> sure meds are not harming him? How does Dr. G. know

scientifically

> if these meds are really helping---aside from our phone feedback

and

> emails? These routine labs are not repeating the antibody stuff,

> allergy panels or even viral levels---except we did checkhis HHV6

and

> it was still negative. HOW DOES DR. G. MEASURE IF STUFF IS

WORKING?

>

> 5. What is the best pancake/waffle recipe or brand or product out

> there for a kid who really knows good pancakes. We have a FIRST

> WATCH RESTAURANT AND THEY MAKE OUTSTANDING PANCAKES---WE ALLOW HIM

TO

> HAVE IT ONCE A WEEK. NOW, WE ARE WANTING TO BE " BETTER " AND NOT

GO

> THERE. YET, HE HAS BALKED AT ALL CF/GF I'VE TRIED SO FAR.

>

> 6. WHAT ABOUT BREAD. WE HAVE BEEN ALLOWING WONDERBREAD (3x/wk)

AND

> MCDONALD'S BUNS WITH HAPPY MEAL (2x/wk) BECAUSE IT IS SUPPOSEDLY

> OKAY? BUT IF WE WANTED TO BE STRICTER WHO HAS BREAD THAT REALLY

> TASTES LIKE BREAD?

>

> 7. WHAT ABOUT SUPPLEMENTS. ARE ALL OF YOU REALLY DOING NOTHING

BUT

> A MULTIVITAMIN WITH IRON? THERE SEEM TO BE ALOT OF STUDIES OUT

THERE

> SUPPORTING OTHER SUPPLEMENTS. DR. G. SAYS THEY'RE BAD FOR OUR

KIDS,

> BUT WHAT IF THEY TRULY HELP AND WE DON'T DO THEM? WE KEEP FEARING

> THE EVER CLOSING WINDOW OF THIS DISORDER.

>

> 8. Phenols/salicytes? Certain fruits cause issues with our

kids?

> How do we test to see if our son has reactions to these. Ever

since

> we stopped letting him have his bottle (with Rice Milk)he won't

drink

> rice milk in a cup. He transferred his love of milk to O.J.---but

> we've heard juices can cause hypermotor stuff. We've always

watered

> it down---but he still drinks about 6 servings per day. If he

won't

> do rice milk/soymilk anymore because of the cup---and we take away

> his calcium fortified juice---do we give him calcium supplements?

The

> regular vitamins don't have much calcium in them. In fact, most

> don't even have Iron? What iron supplements do you guys give your

> kids?

>

> THANKS EVERYONE.

>

>

[Guest guest]

hey there,

ihave a similar problem. My Dr. said that it was a

combination of two things. 1) The pads of my feet

problem is RA related, but 2) the one in the arch and

heel is planters fasciatis, which is an inflamation of

the fascia. i asked him if that could be RA related,

since it's inflamatory, and he gave me some vague

anser, which more or less said very little to me.

I'll be seeing him again soon, and I'll have t corner

him on that.

Cheers, Jutta

[Guest guest]

In a message dated 21/08/2004 08:19:16 Central Standard Time,

gilpnh@... writes:

> Maybe I will stick to

> chocolates!!!!!

>

I find that eating large amounts of chocolates and whining to my RA Support

group help my symptoms immeasurably! heehee Cary

[Guest guest]

In a message dated 21/08/2004 08:19:16 Central Standard Time,

gilpnh@... writes:

> When on the immunosuppressants, does it make you more suceptible

> to infection as a general rule?

>

Okay, seriously now: I've been on several of these drugs including Remicade

for about 2 years now. I also worked full time plus in hospitals as a floor

nurse/charge nurse during that time. I have been exposed to TB (accidently! I

don't take TB patients due to the Remicade), and many other infectious things

like shingles and drug resistant infections. I have not caught anything...I

was worried when we had a bunch of influenza patients and later a round of

infectious gastroenteritis patients, but I didn't catch anything! HOORAY! Why?

I wash my hands! The single most important thing any of us can do is

thoroughly wash our hands. Before we eat, after we eat, before and after

toileting,

etcetcetc. If you are careful about that and don't make out with anyone who

has an infectious disease, you are helping your odds greatly! Cary

[Guest guest]

Hi! I have done a LOT of changes. There was no way I could continue working,

gosh I could do so little for myself for awhile. I did get a motorized scooter

with my SS back pay, not becuz I could never walk but becuz the scooter allowed

me to go where I wanted to when I wanted to, no matter what, it also helped me

pace myself easier so that if I had to go to the store and a school open house

in the same day- I could. I had a walker but found my wrists could not tolerate

a walker or a cane at all. The nie thing is I have not had to use the scooter

in a few months, now. :-)

I also got a grab bar and seat riser for my toilet, for similar reasons- I do

not need them every day, but having them reduces me having to call out for help.

That meant I could be home alone while the kids were at school. I also got a

grab bar in the tub, altho it has been a long time since I felt safe to take a

bath when I am the only one in the house. When I cook, I am no longer who takes

the roast out of the oven, now who drains the pasta. Even if I CAN handle it,

later I pay for it. I bought electric scissors. I also got a headset for my

cordless phone. (my wrist often cannot tolerate getting a phone to my ear)

I am not sure what I miss most. As my RA hit hard and fast, I was in nursing

school after having been a nurses aide for many years. I never did get to work

as a full fledged nurse. I worked hard, many hours every day and took care of

everything at home alone. I miss independance, I miss working....but I have new

passions, now. My house is now never immaculate, but, my kids love to come sit

on me or next to me and chatter with me. This was not possible working the way I

did.

I felt driven, my husband has been disabled since 1990 and for years I was our

sole source of income, and with 2 disabled kids, we had therapists and what not

in our home often- so I was strict with myself with our house. I was a

different kind of wife and mother than I am now. Now the dishes CAN wait. The

laundry is not gonna go anywhere if I do not do it every single day. I think I

was afraid I was gonna die, by suicide or when the RA settled into a spot in my

throat for a short time...and my husband has AGent Orange cancers....it affected

me hard. If my little guy wants to sit with me and watch a movie nwow, I never

tell him " later "

This is not to say I do not still get upset I have this illness. I do still

have days when I really hate it terribly. I DO miss work, so much. I miss

" being in total charge and control " but I am slowly learning to accept the here

and now better. But, I think it does help I am 45 and not 20 or 25 or

something. My kids are 15, 14 and 9. They are not real little. My family was

complete when this hit so hard....

LOL LOL one change that was really fun was, my big old outside dog died when I

was first sick. I had been thinking about a smaller type dog. We got a bichon

poodle dog tricolor and he rides my scooter, and sits at my side and follows me

all day long. BUT before we got him, I had to make it clear that I did need

help with him- cuz to go outside either front or back, there are 4 stairs. I

was so scared I might not be able to get him out every single time- (although

our back is fenced) so I had to have agreement and cooperation from the whole

family that they would help. They have. :-)

He keeps me amused on my low days when everyone else is at school and I am now

just busy being home.

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

> Hey all, as I read and read the posts I am gleaning information on

> the meds used so that maybe I can talk intelligently when I meet

> my " rheumy " as you call them for the first time in a few weeks. Also

> finding that my insurance dosn't cover alot of them.

> When on the immunosuppressants, does it make you more suceptible

> to infection as a general rule?

> What are some things/lifestlyle modifications, tips that help you

> most? I am one of those highfunctioning overachieving females that

> likes things just so, not as bad as I used to be but I can see now

> that I will have to make adjustments to my lifestyle and mental way

> of thinking to maintain some joy in my life, I think with my current

> way of thinking I can easily make myself miserable.

> I think what I am going to hate to give up, and I will fight it

> til the end, is I love cake decorating, the small projects don't

> seem to bother me but when I do multiple cakes for say a banquet I

> can't use my hands for a few weeks afterwards. Maybe I will stick to

> chocolates!!!!!

> I think most important to me is to try and not let this

> interfere with the children, I don't want to hinder their choices

> because of my problem.

> Any thoughts welcome. Thanx a bunch in MO

[Guest guest]

----- Original Message -----

From: " Steph "

> In the Asian markets, is " glutinous rice flour " the sweet/sticky rice and

what exactly is " sweet potato flour? " Is that actually from yams/sweet

potatoes because it was just sort of a beige color?

>

> TIA. Steph

Yes.

--s, who just got back from the Asian market....

[Guest guest]

>How alcoholic is Heidi's apple juice kefir beer? It's really good and my kids

keep asking for some, but I wasn't sure if it's something they should be having

or not. :-)

It depends on the mix of LAB and yeast. I don't know any good way to test it.

Some batches seem more alcoholic than others, to me, but the devices that

measure alcohol actually test surface tension, and lactic acid messes up surface

tension too.

FWIW though, the pioneers all drank cider all day long, men, women and children.

The " apple a day keeps the doctor away " was not referring to the fruit!

Jefferson started his day with a QUART of cider for breakfast. The average human

gut produces about 1 beer's worth of alcohol a day, I read somewhere (though

that is likely on the SAD).

As for sweet potato flour: what a great idea! Sweet potatoes are one of THE most

nutritious vegies that exist.

Heidi Jean

[Guest guest]

On Sat, 30 Oct 2004 18:19:44 -0700

Heidi Schuppenhauer <heidis@...> wrote:

> FWIW though, the pioneers all drank cider all day long, men, women and

children.

The " apple a day keeps the doctor away " was not referring to the fruit!

Jefferson started his day with a QUART of cider for breakfast. The

average human gut produces about 1 beer's worth of alcohol a day, I read

somewhere (though that is likely on the SAD).

#######

In the book, _Heavy Drinking: The Myth of Alcoholism as a Disease_,

http://tinyurl.com/4qe7n

the author notes that what we would today define as " heavy drinking " was

quite common among the colonials, even among the so called Puritans, and

yet none were what we would call today an " alcoholic. "

Kick the Habit: Don't Vote!

http://tinyurl.com/439vl

Eat fat, get thin... lift big, get small.

" They told just the same,

That just because a tyrant has the might

By force of arms to murder men downright

And burn down house and home and leave all flat

They call the man a captain, just for that.

But since an outlaw with his little band

Cannot bring half such mischief on the land

Or be the cause of so much harm and grief,

He only earns the title of a thief. "

--Geoffrey Chaucer, The Manciple's Tale

[Guest guest]

> the author notes that what we would today define as " heavy drinking "

> was

> quite common among the colonials, even among the so called Puritans,

> and

> yet none were what we would call today an " alcoholic. "

Perhaps the difference was that these old-time daily drinks were all

natural ferments instead of cultivated yeast ferments? I have no doubt

in my mind that alcoholism exists; I've seen too many people's lives

ruined, nearly including my own and my husband's. But kefir beer (if I

don't let it sit too long) and other fermented drinks with a little

alcohol in them don't bother me at all nor do they make me want to get

plowed. I have no idea if this is true or not and I don't experiment

with my sobriety very much. But I have noticed this.

Lynn S.

------

Lynn Siprelle * web developer, writer, mama, fiber junky

http://www.siprelle.com * http://www.thenewhomemaker.com

http://www.democracyfororegon.com * http://www.wisforwomen.com

http://www.knitting911.net * http://www.tomformayor.org

[Guest guest]

>Perhaps the difference was that these old-time daily drinks were all

>natural ferments instead of cultivated yeast ferments? I have no doubt

>in my mind that alcoholism exists; I've seen too many people's lives

>ruined, nearly including my own and my husband's. But kefir beer (if I

>don't let it sit too long) and other fermented drinks with a little

>alcohol in them don't bother me at all nor do they make me want to get

>plowed. I have no idea if this is true or not and I don't experiment

>with my sobriety very much. But I have noticed this.

>

>Lynn S.

I tend to agree here ... until recently it was difficult to NOT have LAB

in ferments. The LAB ferments I find it very difficult to " overdrink " ..

they are filling.

And distilled alcohol was expensive for most of history.

The modern drinking problems seem to have come about when

distillation was invented.

Heidi Jean

[Guest guest]

On Mon, 1 Nov 2004 14:40:45 -0800

Lynn Siprelle <lynn@...> wrote:

> > the author notes that what we would today define as " heavy drinking "

> > was

> > quite common among the colonials, even among the so called Puritans,

> > and

> > yet none were what we would call today an " alcoholic. "

>

> Perhaps the difference was that these old-time daily drinks were all

> natural ferments instead of cultivated yeast ferments?

That I don't know. But I do know that people having been getting

intoxicated since time immemorial, so whatever they drank it was up to

the task.

I have no doubt

> in my mind that alcoholism exists; I've seen too many people's lives

> ruined, nearly including my own and my husband's.

I've known several people whose lives have been ruined when alcohol

became its central core. The author disputes such behavior though as

being a disease, not that people engage in it.

At any rate, this question won't be resolved on this list of any other

list anytime soon. Particularly given the extremely controversial nature

of the book as noted in the brief blurb below:

" Heavy Drinking informs the general public for the first time how recent

research has discredited almost every widely held belief about alcoholism,

including the very concept of alcoholism as a single disease with a

unique cause. Herbert Fingarette presents constructive approaches to

heavy drinking, including new methods of helping heavy drinkers and

social policies for preventing heavy drinking and the harms associated

with it. "

But kefir beer (if I

> don't let it sit too long) and other fermented drinks with a little

> alcohol in them don't bother me at all nor do they make me want to get

> plowed. I have no idea if this is true or not and I don't experiment

> with my sobriety very much. But I have noticed this.

>

> Lynn S.

>

Well I do think that modern distilled liquors can present a problem which

many traditional fermented drinks probably don't do.

Kick the Habit: Don't Vote!

http://tinyurl.com/439vl

Eat fat, get thin... lift big, get small.

" They told just the same,

That just because a tyrant has the might

By force of arms to murder men downright

And burn down house and home and leave all flat

They call the man a captain, just for that.

But since an outlaw with his little band

Cannot bring half such mischief on the land

Or be the cause of so much harm and grief,

He only earns the title of a thief. "

--Geoffrey Chaucer, The Manciple's Tale

[Guest guest]

> At any rate, this question won't be resolved on this list of any other

> list anytime soon. Particularly given the extremely controversial

> nature

> of the book as noted in the brief blurb below:

>

> " Heavy Drinking informs the general public for the first time how

> recent

> research has discredited almost every widely held belief about

> alcoholism,

> including the very concept of alcoholism as a single disease with a

> unique cause. Herbert Fingarette presents constructive approaches to

> heavy drinking, including new methods of helping heavy drinkers and

> social policies for preventing heavy drinking and the harms associated

> with it. "

Wow. Well, people will always try to seek the easier way. That's human

nature.

Lynn S.

------

Lynn Siprelle * web developer, writer, mama, fiber junky

http://www.siprelle.com * http://www.thenewhomemaker.com

http://www.democracyfororegon.com * http://www.wisforwomen.com

http://www.knitting911.net * http://www.tomformayor.org

[Guest guest]

Hello.I was wondering about what questions I should ask when I

see the rheumatologist for the first time.Also,what should I be

educating myself about so I can best communicate with the Dr?

Does anyone have any books they can suggest?

Also,although I have an appointment on the 22nd of November

with a Dr.in Indianapolis,I am open for suggestions if anyone in

IN knows of a great Doctor.

What meds should I be learning about?

Sorry for all of the questions.I am new to the group and to RA

and I feel like I am just lost and so uneducated about this

illness.

Thanks so much for being here.

~Indiana~

[Guest guest]

Hello.I was wondering about what questions I should ask when I

see the rheumatologist for the first time.Also,what should I be

educating myself about so I can best communicate with the Dr?

Does anyone have any books they can suggest?

Also,although I have an appointment on the 22nd of November

with a Dr.in Indianapolis,I am open for suggestions if anyone in

IN knows of a great Doctor.

What meds should I be learning about?

Sorry for all of the questions.I am new to the group and to RA

and I feel like I am just lost and so uneducated about this

illness.

Thanks so much for being here.

~Indiana~

[Guest guest]

Hi . These sites should help answer your questions. The first

one is my site that is full of links

to information about RA and other rheumatic diseases.

http://arthritissupport.info/

What can patients expect at their first visit with a rheumatologist?

http://arthritis.about.com/od/buildyourhealthcareteam/f/firstvisit.htm

If you hang around our group for awhile, you'll learn a lot from many

very educated members.

Feel free to ask questions.

a

On Nov 1, 2005, at 12:18 AM, M. wrote:

> Hello.I was wondering about what questions I should ask when I

> see the rheumatologist for the first time.Also,what should I be

> educating myself about so I can best communicate with the Dr?

> Does anyone have any books they can suggest?

> Also,although I have an appointment on the 22nd of November

> with a Dr.in Indianapolis,I am open for suggestions if anyone in

> IN knows of a great Doctor.

> What meds should I be learning about?

> Sorry for all of the questions.I am new to the group and to RA

> and I feel like I am just lost and so uneducated about this

> illness.

>

> Thanks so much for being here.

>

>

> ~Indiana~

>

>

[Guest guest]

Hi . These sites should help answer your questions. The first

one is my site that is full of links

to information about RA and other rheumatic diseases.

http://arthritissupport.info/

What can patients expect at their first visit with a rheumatologist?

http://arthritis.about.com/od/buildyourhealthcareteam/f/firstvisit.htm

If you hang around our group for awhile, you'll learn a lot from many

very educated members.

Feel free to ask questions.

a

On Nov 1, 2005, at 12:18 AM, M. wrote:

> Hello.I was wondering about what questions I should ask when I

> see the rheumatologist for the first time.Also,what should I be

> educating myself about so I can best communicate with the Dr?

> Does anyone have any books they can suggest?

> Also,although I have an appointment on the 22nd of November

> with a Dr.in Indianapolis,I am open for suggestions if anyone in

> IN knows of a great Doctor.

> What meds should I be learning about?

> Sorry for all of the questions.I am new to the group and to RA

> and I feel like I am just lost and so uneducated about this

> illness.

>

> Thanks so much for being here.

>

>

> ~Indiana~

>

>