Re: Digest Number 282

[Guest guest]

Have you asked your doctor to possibly up your pain meds? What DMARDS

> are you on now?

hello, thanks for the kind words of encouragement. No, I haven't asked the

doctor recently about upping the pain meds. But I intend to at the next

visit in Oct. if things don't get any better. The codeine contin has been

upped a few times. I am on 150 mg three times a day now. Before I was taking

200 mg 2X/day, but it wasn't enough. He wanted me to take 200 3X/day, but I

felt that was alot, so we decided on 150 mg. I have 200 mg tablets here, I

wonder if I should try 200 mg as that's what he wanted anyway.

The DMARDS I take are plaquenil, methotrexate 20 mg IM weekly and gold

injections weekly. I also take an antiinflammatory, arthrotec

[Guest guest]

I go to bed everynight, thinking I was incorrectly diagnosed and by the time

> they find it, I will only have weeks to live....

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

Oh! I thought that I must be the only person who thinks they have been

diagnosed wrong. I think about this quite often, especially on days when the

pain is really bad. I know I have P and I know I have PA, BUT, I think there

has got to be something else wrong with me as nothing is helping and the

pain isn't going away, or even being controlled.

So, how's that? I guess deep down inside, I know that they are right, but I

always have this " what if they're wrong " thought in the back of my head..

[Guest guest]

Dear ,

I have to tell you, I am glad you think that way also...., I am so fearful, that

once again I am going back to the gynecologist tonight for an app't, thinking

it's my ovaries that is causing the back pain.....he is going to commit me. It

has just gotten so bad , that I can't imagine arthritis feeling this bad,

I remember my grandmother just popping some anacin (do they still sell that),

and she felt better!!!!!!!!

I just know something else is going on in my body. For 6+ days now, I can

hardly walk, waking up at 3am, in tears...and my husband comes down the steps

getting ready for work thinking the reason that I am up is to surprise him with

coffee....DON'T THINK SO.

My RD appt. is tomorrow, thank GOD. I can't just run in there because I have to

pay for those visits out of my pocket. The lovely union insurance that we have

through my husband has a policy - they do not pay for OV's, isn't that lovely,

since his wife is at the dr's at least once or twice a month. The RD charges

$100.00/visit.

Thankfully, the girls let me make payments monthly. Before I got sick, I would

have never thought of doing this, always paying in full......now things have

changed. I have spent more on drs visit than a new car costs......Oh look at me

rambling....I just wanted to tell you about my appt tonight with the

gynecologist. Once more, need to know everything is ok in that

department......Am I nuts???????

Jayne

The Fergus' wrote:

> From: " The Fergus' " <akfergus@...>

>

> I go to bed everynight, thinking I was incorrectly diagnosed and by the time

> > they find it, I will only have weeks to live....

> ----- Original Message -----

>

> Oh! I thought that I must be the only person who thinks they have been

> diagnosed wrong. I think about this quite often, especially on days when the

> pain is really bad. I know I have P and I know I have PA, BUT, I think there

> has got to be something else wrong with me as nothing is helping and the

> pain isn't going away, or even being controlled.

> So, how's that? I guess deep down inside, I know that they are right, but I

> always have this " what if they're wrong " thought in the back of my head..

>

>

> > Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

[Guest guest]

In a message dated 9/23/99 6:17:10 AM Pacific Daylight Time,

akfergus@... writes:

<< BUT, I think there

has got to be something else wrong with me >>

...I felt the same way when I first came down with RA/PA. I had NEVER

known or even heard of anyone else who had simply awoke one morning and was

crippled for life...not to mention the unbelievable pain. I had never known

" arthritis " to destroy annoys life as it was destroying mine...so I even

thought it must be bone cancer or something terrible to go along with the

terrible symptoms I was experiencing.

Many of us do not know anyone else in real life who shares this disease.

This list has been my first chance to talk to others...many who have also

experienced the same sudden onset that I did...and the intense pain. Yes,

having PA is a dirty job...lol...but somebody's got to do it...and I guess

it's us. )))

Annette

[Guest guest]

,

I too thought I was going to die. I often wonder on my bad days if they

haven't made a mistake. It's tough sometimes.

Amy

[Guest guest]

At 09:35 AM 6/2/00 +0000, you wrote:

> A friend of mine got a BAD sunburn over the weekend and now half of her

>face is red red red and painful. Her neck, on the same side, is swollen and

>it is killing her. I suggested oatmeal, but this burn is bad. Is there

>anything else I can suggest she do? Any help would be GREATLY appreciated.

lavender lavender lavender.

I'd use a blend of aloe vera gel and lavender... if you HAVE helichrysum

italicuum, add some of that...it would be my first choice, but few soapers

have it on hand.

if you have german chamomile, that might help as well.

Your source for superb Essential Oils, Aromatherapy

Accessories, Information, Books and more!

Visit us at: <http://www.naturesgift.com>

[Guest guest]

Hi Amber,

The reason I first started looking at this board, is that I have two

friends, who don't speak English very well, who have sons that have food

related autistic problems. Both boys are six years old, both have a female

twin, they were both born through IVF. I also have another acquaintance who

has female twins. They are about 11 yo now, and one of the girls has severe

psychiatric issues. I think she is on the spectrum as well, but I don't know

her well enough. Also her mother has some food issues, and as allergies

quite often run in families....

It's odd isn't it, that of all the twins I know more or less intimately,

three have one healthy girl, and two have boys with similar problems, and

one girl has such behavioral issues that she can't live at home. (She was so

aggressive towards her sister and mother (father moved out because of the

problems) that it was impossible to live with her. When she was three she

almost scratched her sisters eyes out. She can't be left alone for five

minutes and the mother has to work, as the father has left... If anybody has

any suggestions about this situation, they would be very welcome.)

I too think that my eldest's food allergies and behavioral problems were at

least aggravated by immunizations. My youngest hasn't had his MMR. He is

just allergic to dairy. He had his DTP and HIB shots, though.

>

> No, . None of my kids have had any immunizations...It was a difficult

> decision, one made from much research and I am not convinced that it was the

> right one, but I am more convinced that it was right than that it was wrong.

> There are no black and white answers, unfortunately. AS the children get

> older, I may explore some immunizations and I am presently looking into

> homeopathic nosodes rather than the pharmaceutical type immunizations. I do

> feel fotunate that I don't have that question burning in the back of my mind

> " Did the MMR vaccine cause this? " In my case, there is no question,

> obviously. The interesting thing to me is that Spencer is a twin..his sister

> is coompletely the other end of the spectrum and has been tested out as

> extremely bright, way ahead of her age level in all areas. So, go figure. Was

> it something I did or didn't do during pregnancy? Who knows? Genetic? Dumb

> luck? The kids are about to enter a study on autism being done by the

> University of California at San Diego. They want to use Scarlett as kind of a

> control because of the unique disparity between the kids. So, absent any

> invasive or risky testing, I am happy to help increase the knowledge base for

> finding answers to this dreadful condition.

[Guest guest]

,

Your information about the other twins you know was curious, but not

surprising to me. I have observed very consistently in my home that my boys

will get sick (flu, cold, etc.) and my husband will get sick (sometimes he

gives it to them, sometimes vice versa) and Scarlett may get it at the very

end if at all and very lightly; I NEVER get sick. I am the one wiping three

poopy butts, cleaning up vomit, wiping runny noses and I just don't get the

bugs. I asked my pediatrician about this and he told me that it is so

overwhelming in his practice how much sicker the boys get and more often

things hit the boys than the girls. The weaker sex was apparently not aptly

named LOL! I wonder if that is the link with why so many more boys deal with

these neurological issues than girls?

Amber

[Guest guest]

My oldest son, 13 has had many psychiatric and behavioral issues also. He is

ADHD, with depression, anxiety and OCD issues. Medicine worked for some time

and then stopped. He also could be violent at times and it was difficult to

leave him at his worst. He differs greatly from my Asperger's son in some

respects but alike in others. My youngest started the diet at 4 years old

with great improvement. It was much more difficult with my older child who

hangs with " normal " kids to try to implement the diet. He did have a peptide

test this winter which revealed a gluten peptide of over 200! We took him to

a traditional gastro doctor who recommended an intestinal biopsy. He was

also only 65 pounds and had put on very little weight and had grown very

little.

Well, low and behold the biopsy was positive for Celiac's decease! He is now

on an GF/CF diet and has gained 25 pounds and grown 3 inches in the last 6

months! An article my nutritionist sent to me says " Neurological dysfunction

not only can precede celiac disease in gluten-sensitive individuals but can

be the only manifestation of gluten sensitively. " Take note! My son is like

a different child today! There is hope. Jill

[Guest guest]

Hi all,

Dennis, send Diane my thoughts and prayers!

Well tomorrow night I will be at the Kobe , Shaquille O'Neill

invitation only allstar party. The band I work for is playing there and I

get to go (I will be working)! I am really nervous. Please everyone, pray

that i make it! If I can get through a year of treatment than I know I can

do this. I am just shaking in my heels. We have been told that there will

be stars from LA attending and I'm sure I will just be all tongue tied and

stuff. Any words of wisdom.........

Vicky

[Guest guest]

I will.

Go for it! - and have a great time!

Re: [ ] Digest Number 282

> Hi all,

>

> Dennis, send Diane my thoughts and prayers!

>

> Well tomorrow night I will be at the Kobe , Shaquille O'Neill

> invitation only allstar party. The band I work for is playing there and I

> get to go (I will be working)! I am really nervous. Please everyone, pray

> that i make it! If I can get through a year of treatment than I know I

can

> do this. I am just shaking in my heels. We have been told that there

will

> be stars from LA attending and I'm sure I will just be all tongue tied and

> stuff. Any words of wisdom.........

>

> Vicky

>

>

>

>

[Guest guest]

Vicky you will have no problem but I'm sending you lots of luck anyway..

[Guest guest]

Have Fun

Re: [ ] Digest Number 282

> Hi all,

>

> Dennis, send Diane my thoughts and prayers!

>

> Well tomorrow night I will be at the Kobe , Shaquille O'Neill

> invitation only allstar party. The band I work for is playing there and I

> get to go (I will be working)! I am really nervous. Please everyone, pray

> that i make it! If I can get through a year of treatment than I know I

can

> do this. I am just shaking in my heels. We have been told that there

will

> be stars from LA attending and I'm sure I will just be all tongue tied and

> stuff. Any words of wisdom.........

>

> Vicky

>

>

>

>

[Guest guest]

Have fun! Don't get a stiff neck looking up all

night... -dz-

--- VicLea227@... wrote:

> Hi all,

>

> Dennis, send Diane my thoughts and prayers!

>

> Well tomorrow night I will be at the Kobe ,

> Shaquille O'Neill

> invitation only allstar party. The band I work for

> is playing there and I

> get to go (I will be working)! I am really nervous.

> Please everyone, pray

> that i make it! If I can get through a year of

> treatment than I know I can

> do this. I am just shaking in my heels. We have

> been told that there will

> be stars from LA attending and I'm sure I will just

> be all tongue tied and

> stuff. Any words of wisdom.........

>

> Vicky

>

>

__________________________________________________

[Guest guest]

, just wanted to tell you what a great job you do in keeping us up to

date on the latest research. It seems to be a one way street--you giving us

all this great information and no one else ever posting.......but it really

is greatly appreciated.!!

By the way, I have SLL/CLL so I bounce between the NHL and CLL boards...it

seems to me that many of your postings would be just as relevant to

non-Cllers (e.g., lymphoma patients) but not sure they would know to look at

it.

Thanks a million for all you do.

Bill

SLL/CLL--mini MUD Allo scheduled at DFCI 5/1/02.

(more info. at www.caringbridge.com/va/billk)

[Guest guest]

Hello everyone!

I'm soooooo glad to hear that others are having the " latch " problem as

well. At least I know I'm not alone! , I feel your pain, lady! I

know JUST where you are with this one. I agree with Betty.... if your

husband finds the magic trick of teaching them to stay out of the fridge,

could he come here as well and teach ? Perhaps you could rent him out

all across the nation to keep us all a little more sane (smile). I'll never

forget the morning I woke up and found he'd opened my freezer at some point

during the previous night-- I wasn't aware he'd done it--- every bit of food

was spoiled beyond redemption. I had just been grocery shopping the day

before and spent about $50 on meats and frozen goods. Needless to say it was

NOT a good start to the day.

Fortunately the duct tape to hold theCatapres (clonodine) patch on

is working pretty well, but I have found that the oils in his skin make it

likely to come off in about 24 hours, so I have to keep a check on it. But

it does seem to work much better than those sticky patches that come in the

box, folks, so give it a whirl. I have the school nurse checking his blood

pressure once a day, and so far he has been fine. His teacher says he is

much calmer in the classroom. I do notice he is a little weepy at times,

especially at the end of the day when he's tired anyway.Other than that the

Catapres seems to be doing the trick.

If anyone out there has a clever idea for a good latch, let us know.

God Bless, everyone!

[Guest guest]

From: Jan Jenson <vizual@...>

You might want to try EFT for those sensitiviites.

It works almost like magic...!

vocal affirmations and tapping on your body to reinforce the words!

www.emofree.com

Jan Jenson

The Detox News

Would advise to get a Feng Shui person with EMF-meter to do your house and

see if there is enough improvement. (A Tachyon healer that is a medium took

one treatment to improve the situation where there was no pain with each

phone. There are also energy workers that know about the indigo crystal

transition, that work with tachyon and or hands on healing, I even had

success with treatments of a medium that used my picture for access

(prayer), or via the phone. There is sites where you can just leave a name

to lihght a candle for someone and prayer groups that offer free service if

you believe in the power of prayer). Now I pray myself and I feel each pain

of the whole sequence go out, not as pain but as a srting of energy. Almost

there, some of it I feel now where it came in so i know it won't be long

before I am free of this)

[Guest guest]

Interesting. I've used something similar called TFT (Thought Field

Therapy). It was tremendous for clearing emotional blocks that were built

up when I was ill.

ie. Emotional blocks that cause anxiety when attempting to do certain

acitivitities. For me it included everything from going to the grocery

store, to eating in a restaurant - any social activity wiped me out (from a

combination of ES symptoms, and plain fear). A few rounds of TFT and I was

able to overcome those anxieties and live a normal life again.

Glenn

>From: Jan Jenson <vizual@...>

>Reply-

>< >

>Subject: Re: Digest Number 282

>Date: Mon, 17 Jan 2005 08:53:04 -0500

>

>

>From: Jan Jenson <vizual@...>

>

>You might want to try EFT for those sensitiviites.

>It works almost like magic...!

>vocal affirmations and tapping on your body to reinforce the words!

>www.emofree.com

>

>Jan Jenson

>The Detox News

>

>

>Would advise to get a Feng Shui person with EMF-meter to do your house and

>see if there is enough improvement. (A Tachyon healer that is a medium took

>one treatment to improve the situation where there was no pain with each

>phone. There are also energy workers that know about the indigo crystal

>transition, that work with tachyon and or hands on healing, I even had

>success with treatments of a medium that used my picture for access

>(prayer), or via the phone. There is sites where you can just leave a name

>to lihght a candle for someone and prayer groups that offer free service if

>you believe in the power of prayer). Now I pray myself and I feel each pain

>of the whole sequence go out, not as pain but as a srting of energy. Almost

>there, some of it I feel now where it came in so i know it won't be long

>before I am free of this)

>

>

>

>

[Guest guest]

I've done it again. I finally got some carbonation in my brew and just

loved it, but it's gone again. I've been just leaving the " dregs " in the

bottom of my brewing jar, and adding fresh tea and the scooby, sometimes a

little more starter kt. Can anyone see what I'm doing to upset the balance?

[Guest guest]

Well not all brews come out perfect but maybe you could give us some clues

by answering some of these questions since it's hard to see at this

distance. ;-)

What type of tea?

How much tea (teabags)?

How long a steep?

How much water?

How much sugar? (white?)

How much starter?

What temperature are you fermenting at?

How long did you ferment?

How sweet was the end result?

Describe what the mother culture looks like.

Describe what the ferment looked like?

Believe it or not, with the possible exception of water, all of these can

influence a brews effervescence.

Also these can provide more clues. Describe what the baby culture looks

like. (color, thickness, density) If you look closely at the liquid can you

see any kind of bubbles occassionaly?

- Len

Re: Digest Number 282

I've done it again. I finally got some carbonation in my brew and just

loved it, but it's gone again. I've been just leaving the " dregs " in the

bottom of my brewing jar, and adding fresh tea and the scooby, sometimes a

little more starter kt. Can anyone see what I'm doing to upset the balance?