Jen

December 22, 2000

I lived in central Maine in Fairfield (Waterville area) about 20 minutes north of Augusta.

In a message dated 22-Dec-00 01:35:20 AM Eastern Standard Time, blondejen15@... writes:

Where did you live in Maine?

April 24, 2001

thank you i thought the first few ingredients sounded familliar as properties

of oil but i was insure of their connection to sodium hydroxide. the

ingredient list i gave came from the place i buy the M & P from so for the sake

of fair and honest labeling what is your recomendation ? list as the company

does or dig deeper . another reason i don't sell M & P i don't know what is in

it so what can i tell customers i just believe my supplier when they say all

natural ingredients vegetable based. well thank you again--tamika

April 24, 2001

Hi,

The first four are fatty acids which have been reacted with Sodium

Hydroxide. This list indicates to me that these were purchased already

saponified from a manufacturer and then mixed with everything else to make the

soap.

If you make cp then you know that different fatty acids have different

properties, some make big fluffy bubbles - others more dense bubbles, some a

harder bar etc. It is common to use only the fatty acids individually for the

properties you want, o.k., maybe not at home - but this is why cp'ers mix oils

for the properties of the individual oils to come up with a well balanced bar...

The chelating agent is also more likely than not to be Trisodium or

Tetrasodium EDTA. DM H. is a preservative manufactured by McIntyre Group.

HTH,

Jen

April 24, 2001

Tamika, what you have there is indeed a syndet containing MP base, it

is not soap and although I personally consider " natural " a meaningless

term, there are a lot of people who would not consider the synthetic

detergent (the SLeS) " natural " . Those people would likely object to

several other ingredients in that base, including the DMDM hydantoin.

Jules

> thank you i thought the first few ingredients sounded familliar as

properties

> of oil but i was insure of their connection to sodium hydroxide. the

> ingredient list i gave came from the place i buy the M & P from so for

the sake

> of fair and honest labeling what is your recomendation ? list as the

company

> does or dig deeper . another reason i don't sell M & P i don't know

what is in

> it so what can i tell customers i just believe my supplier when they

say all

> natural ingredients vegetable based. well thank you again--tamika

February 18, 2002

Hi Jen,

I'm not sure if that's why they don't carry soap anymore. The soap shop

across the street has been there since last year. Everytime I tried to go

there they were closed, I finally went in a couple of weeks ago. When

Handwork did carry some soap they didn't really have much of a selection,

and they weren't member soaps, just stuff they must have bought wholesale.

They had some salts and herbal stuff from Sunfeather (I didn't know they

did that). Good luck Jen!!

Take care,

Cheryl

Cattail Pond Herbs, Soaps & Sundries

http://www.angelfire.com/biz/cattailpond

June 4, 2002

Hi Jen,

Are you sure she's breathing through her nose? I don't know if they can

still breath from their nose if their tissues are swollen, it doesn't seem

like it!!! Sometimes, when I think is breathing from his nose, he

really isn't. I notice at night (while he is sleeping) that he is mouth

breathing. Also, with a sinus infection, he tends to get dry lips from all

of the mouth breathing.

About the fever and discharge: I strongly disagree with the Doc who told

you that. First of all, PID kids don't always run fevers--their immune

systems simply don't react in a normal way. Also, as I mentioned before,

never, ever, ever has a discharge. If we went by that Doc's criteria,

that would mean that my son never has a sinus infection. The truth is, he

has them chronically. No fever, no discharge. No fever because of the PID

and no discharge because his sinuses swell shut. Did this ENT check in

's throat? There is something in MD terms that is called " cobble stone "

and it happens in the back of the throat with a sinus infection.

always has this go on. But every child is different, and this Doc needs to

not treat like a normal kid with a normal immune system. Stick to your

guns!! Maybe get a second opinion? Hopefully, if she is infected, it will

show up on the tests.

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

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

surgeries, heart surgery pending.

June 4, 2002

That makes sense, Sandi. I would think that was it, except that she

can breathe through her nose just fine. Is it possible to breathe

through the nose when the tissues are swollen?

Oh, I heard back from the ent and he said that unless she was having

a fever, copious discharge, etc, he wanted to wait until we got the

tests back before treating her. I am a little nervous about that.

Jen and

June 4, 2002

Sandi, that's the strange thing. Her throat is always, and has always

been 100% clear and clean. Nothing drains down her throat, ever. And

as for the breathing, I know she is breathing out of her nose because

I've had her breathe in and out several times during our " clear "

days. I just don't get it. The results of the test will tell us more,

I am sure, at least I hope. And I agree with you, I think it's a bad

idea to let her walk around with an infection and if we still haven't

gotten answers by Friday, I'll call again. Oh, and no dry lips.

Thanks for mentioning the sinus passages swelling, I am definitely

going to have to ask him about that!

June 4, 2002

I agree with Diane. ENT's don't work for Bri either, because they treat him

like a normal kid. His Ped is the one I always take him to when he's sick.

He has a unique understanding of my child and is the one who diagnosed the

PID. Also, there is more consistency with always taking him to the same

place.

Sandi, 's Mom

June 4, 2002

Jen, I was thinking, ouch, and I wondered if you just call your ENT

about this or do you also take in to your pediatrician? When Kody

was little, I skipped the ped and called the ENT for things like that.

Then when I switched doctors because Kody was just not doing well and I

wasn't happy with the lack of response from his doctor, his new ped told

me that he preferred I call him and bring Kody in to see him first for

everything. If he needed to be seen by the ENT he would certainly refer

us, but, this way all the infections and how long they last etc is being

monitored under one roof so to speak. Also, as was pointed out, ENT's

don't know anything about our pid kids. They treat your child like a

child with a healthy immune system that happens to have ear infections

or sinus infections. This just will not give your child adequate care.

And when Kody is referred to the ENT, his ped calls and makes the

appointment, and faxes them all pertinent information plus his

recommendations. We do this even with Kody's immunologist. I don't go

there when he is sick, I go to the ped's office. If it is serious, the

ped calls his immuno. If it isn't then we wait until our sixth month

check and the ped faxes Kody's records for that time to the immuno. A

child with a normal immune system most likely wouldn't get sicker by

waiting. A child with pid could get very sick by waiting. Have you

called and asked your ped what he thinks? Kody has a team of doctors,

but his ped heads the group and it works very well for us. I am

wondering if maybe you could arrange to call and talk to your ped about

this whole sinus thing, and also a protocol to follow when she is sick

(who to call when kind of thing, make sure you are on the same page with

your ped). Just a thought.

Diane, Mom to Kody

June 6, 2002

Hi just my two cents. When Lucas was 2 he had a bad sinus infection. He was

loosing weight and initially had no fever. He had 9 courses of antx over 3

months with no improvement. We then went off of the antibiotics for 3 days

and he spiked a fever of 103 and did not come down for over a week. We live

about 11/2 hours from Seattle but went to Children's Hospital there. We had

seen the ENT and he was not too concerned. After the 8th day of fever. He

said we could go home. ( still with fever) That day the immunologist came

back from a trip. He looked at Lucas and then we were in surgery 2 hours

later. The ENT found copious amounts of Strep and damaged sinus tissue. The

ENT put in tubes said he was very surprised that he had never seen a 2 year

old with infected sinuses and suggested 10 days of IV antx. The immuno said

no way you need atleast 6 weeks. We did 3 different ones at the same time as

well as solumedrol. ( steroid IV) for six weeks. Lucas cleared up but within

a week was infecting again. I too do not have the confidence in ENTs. They

seem to thing surgery is the answer which I believe is very controversial.

BARBIE Lucas 6 ( Bipolar, dysgamm/ selective antibody deficiency,

PS Lucas rarely had a runny nose even with a severe infection.

June 25, 2002

Jen,

thank you so much for caring..it means the world to me. I think what he is

doing is trying all these other meds for some reason. He thinks that I am way

too young for MTX or remicade yet....I am soon to be 36 and he has said that he

doesn't want me on these drugs yet. He seems so conservative Jen, but I do

feel that he is not " hearing " me at times. At times I get frustrated with him

and other times I do not. I don't know if he sees me working as not being very

active with the Stills or what, but he has seen me in a severe " flare " only

once, because before that, I was a patient with the oncology group and until we

figured out what exactly I had, and has seen my rash pictures. He is very

knowledgeable of Stills, but again seems to be very conservative at the same

time and I don't know why. Sometimes you just want to " shake " them and let them

know how you feel and just for once, wish that they felt your pain and live with

you for just one day to see just what we go through....I swear Jen..sometimes

they just don't have a clue to what is going on. I am very open with him and

tell him exactly how I feel, but perhaps I was a little laid back this time

because I was just feeling miserable. He hates me on the prednisone.....as

much as I do, so he was trying the sulfazine to see if this works and wean me

off the prednisone, but every time I get below 10mg I have a problem or I

" flare " and I finally think that he is seeing this....it's just so frustrating,

but I don't give up and hopefully soon...something different will happen,

because I am just changing physically every day that goes by. I notice so many

new changes for the worse. No one knows our own bodies like ourselves and I

wish that when we talked, that they would just for once, put themselves in our

shoes and listen to us. It really seems like a lot of doctors are getting very

conservative with meds, or is it just me? I tend to see a lot of this lately

and a lot of them talk about their patients getting addicted to meds, but what

are we suppose to do? A person will abuse a drug if they chose to or not, but I

don't like being " labeled " as others have been in the past. Now a days, doctors

tend to label their patients, and I think and feel that their patients are

becoming too addicted to meds. It's so hard to go through our daily lives with

so much pain and fear about our illness, isn't it? At the age of 36, I am

worrying about my future...not only for me, but how capable I will be as a

single mom to be well for my children. This is very stressful for me and I tend

to do look at the future at times. I have to..I have to prepare myself and I

feel that if he doesn't address the Stills now, that it will do more damage for

me very soon. Does this sound at all right? Be well Jen..and I think of Rocky

often. I am glad that you up-date the group about him. I do know how much you

love him. A Border/Collie mix showed up on my lawn yesterday...I was up to

11:30 last night posting signs and taking care of her. I notified campgrounds,

vet offices, animal control, parks, neighborhoods the radio and still nothing.

She is a beautiful animal and loves the kids, but I don't need another dog..I

have too much on my plate with my illness and my Great Dane and cat..this is all

I needed, but I refuse to send her to the pound for fear that they will put her

down. As I told Tricia, I blame it on my parents...IT'S THEIR FAULT...they

shouldn't of brought me up to be such a kind person to people and animals...they

taught me to love and respect all living things...so you see..it's their

fault..I am blaming them.....lol, lol...... I am keeping my fingers crossed that

someone will call for her.

Love, Sue #2

July 2, 2002

Dear Jen,

You are an amazing woman, and the strength that you have is just beautiful.

Jen...I hope that I don't approach this the wrong way, because I would never

want to say the wrong thing, but you said that you were looking for a sign

about pregnancy, when you said this, I looked at it this way...your " sign "

to me...is your unselfishness of being a " very young mother " to all of us.

You have taken each and everyone here at this site and have taken us under

your wing. No matter what age we all are, no matter male or female. You

have comforted us, talked to us, cried and have laughed. We look to you for

knowledge and strength. I admire you so much and everyone here also does

too. I think of you as the person to go to, to ask my questions to get

answers, and perhaps maybe no answers...mother's are not perfect, but I do

know that when I write to you, you answer, you are there for me, like a

mother, and this is very comforting to me. You look upon all of us here and

give us direction. Perhaps you will have your own children, maybe you will

not and will adopt an abandoned one, like you said, but I think that this is

a " sign " for you...when you become a mother, whether it is your own or you

both adopt...you will become ANOTHER mother, and you will be there in

strength, caring, love, guidance and friendship, just like you have done for

us. Your an amazing person, and I look up to you very much.

Love, Sue #2

-- Re: dear friends

Sue, I hope the doc can give you something to help with the pain and get

this flare under control. I wish I knew what was causing your bruising.

As far as I know I have not heard of anyone else have this symptom. Do you

still keep track of when you flare? I remember yours would occour almost at

the exact same time like 3-4 months apart. Do they still seem to do that?

anyway, write when you can. I'll be praying for ya. Im going to church in

the morning to say the rosary and I will add you in. take care Jen

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

July 3, 2002

Dear Jen,

You have been on my mind almost non-stop since I read your email. I have

struggled with what to say but didn't want to be " one of those " that said

nothing for fear that they wouldn't say the right thing....and I didn't wan to

be " one of those " that unknowingly says something very stupid and hurtful

because I don't understand. I think what Sue #2 said was beautiful and so true.

You are our rock. I couldn't put it any better.

As far as answers as to if you will get pregnant some day or not. Of course

none of us can answer that, but I don't think that not knowing should stop you

from considering adopting. If you adopt you could control when you go off any

birth control (if you are worried about having two children too close in age).

If you adopt and then down the road have one that you give birth to...that would

not be a bad thing. Then you know you will have at least one child and possibly

two. You will love them both the same. I think that's just beautiful. I

don't think it would cause any problems between them. Many families have one

that is adopted and one that is concieved by the natural parents....or even

foster children mixed in with their own children. I just can't imagine that you

would have any problems loving them the same Jen. You have such a huge heart

and it shows with the enormous amount of effort you put into this foundation and

helping others...others you've never even met face to face.

I would hate to see you abandon your belief in an effort to conceive....I think

if you adopt now it will take the pressure off you to have one of your own. You

can try not to have a child until the one you adopt is a couple years...or

however you would like them spaced out. Then, you can stop any method of birth

control and let nature take it's course. If you have one great and if

not....that's ok too because you already have one beautiful bundle that you get

to raise.

This is only my thought process...that's scary in itself! I hope I didn't say

anything that hurt you, but I didn't want to say nothing at all. Please also

know that I respect that this situation is very hurtful, it can be devastating,

and so very complicated. I in no way intended to make it sound like an easy

answer. There are always many solutions to a problem and I just wanted to give

you the one that I thought of. I'm sure there are many more and you'll figure

out which one is right for you. I will pray for you and your husband to have

the wisdom to come up with a solution that feels good to you.

With Love and Hugs, Kim

Reynolds <lisakr06@...> wrote:

Oh Sue!

That was so beautifully written. My eyes are filled with tears.

I feel just like you do. is a an amazing woman and an amazing 'mother'

to each of us.

Thank you for saying it so perfectly.

XO

" A. Matera " <cjlabbe01@...> wrote: Dear Jen,