Janet

October 14, 2002

Dear Janet,

I live in Irving, Texas; home of the Dallas Cowboys.

We have about 180,000 people but it still feels like a

little town. I live in downtown Irving which is

trying to stage a comeback. They raised our taxes

after they began paving the streets and putting fancy,

victorian lightpoles up. I've been here about 16

years and before that I lived in Houston for 10 years.

I was raised in Louisiana even though a lot of my

relatives live in East Texas.

That is so cool that your children are going to the

same school that you did. I have never visited that

area of Texas.

I am glad that you feel comfortable with your rheumy;

that is so important because next to your husband, he

is probably the most needed person in your life. The

hardest part of this disease is the diagnosis. There

are a lot of us who do not have definite ones and if

we are lucky, our rheumy still knows how to treat us.

I should have had a dr that believed in what I was

telling him over 15 years ago. Maybe I wouldn't be in

all of this pain if I had.

They have donuts for dads here also. It is a really

nice program and the kids just love it. There is also

the muffins for moms program here. I am lucky that my

son goes to the best middle school in town. They are

a U.S. Blue Ribbon School and the minute you walk into

this school, you know that your kids are there to

learn. We have uniforms until high school which I

like except for making children tuck in their shirts.

I think this is detrimental to the self esteem of

children that are a little heavy.

Take care, Iris

--- Janet Dees <jdees@...> wrote:

> Hi all - well, I saw my " rheumy " today (I am

> learning the jargon around here). I left with mixed

> feelings - but probably more because I still don't

> have an answer - and I know that I should not get my

> hopes up for that. But - I talked to him about the

> meds and he really wants me to wait for a few more

> months for the plaq to kick in. He acknowledged that

> I am hurting and when I mentioned that I was not

> sleeping wasted no time on giving me an

> anti-depressant to help. He said before I could that

> fatigue would only make me more prone to feeling

> depressed and have a harder time dealing with this

> and then the flare would last longer and so on....so

> we had to fix that.

> He of course ran more bloodwork - this time leaning

> more towards lupus and checking kidney/liver

> functions and all. I guess it feels like we are

> searching for a starting point and it is a tad

> frustrating.

> He is a very kind man and my husband was very

> pleased with him - I guess I just needed to say that

> I understand waiting longer for the meds to have a

> chance - but that waiting is hard when things like

> walking and sleeping are difficult most days!

> All in all though I am pleased with my rheumy - and

> I believe he has my best interests at heart. He

> listens and you can tell he cares. He asked about

> Jeanine (my sister for those of you who are new) and

> was not thrilled about the level of meds she is on.

> So again - he wants to give the mild ones a really

> good chance at working in hope of keeping me off the

> heavy duty ones as long as possible.

>

> Thanks for listening guys - I guess sometimes it

> just helps to talk this stuff out to someone who

> understands! I appreciate the ear and feel better

> about things.

>

> Iris - where in Texas do you live? I am in Copperas

> Cove ( central Texas by Ft Hood ). We grew up here

> and I moved away for college - came back about a

> year an a half ago. It is great to be home again

> too. I never thought I would love it as much as I

> do! My kids go to the same elementary school I did -

> and my son has first grade in the same room I did

> for first grade! It is really neat!

>

> Carol - I got your message via debs to Jeanine and

> then me. Thanks! This group has made a world of

> difference. Even my husband reads the notes and can

> see what a difference it makes to have you guys. He

> will check the email and tell me that I have another

> digest waiting - he says " go read it and I will

> finish... " whatever I was doing.

>

> Heidi - wow! no donuts! Well - I fed 181 dads this

> morning and we had enough left over! If they would

> keep I could send you a few dozen! Apple donuts

> sound good too!

>

> Prayers for all of you! Janet

>

> [Non-text portions of this message have been

> removed]

>

October 21, 2002

Even after you get rid of the source, you have thousands of spores in your home now. If you are going to stay there .. I use hepa filter air cleaners. I threw away my bed and matress. Its hard. Mine is from work but I ended up moving four times before I found a place without a mold problem in the attic or the walls. I just recently moved and am hoping this works out...Janet

December 20, 2002

,

Hope you are doing better. This warm rainy weather is horrid. All I smell is mold here. Im in Maine. Tonight I notice air outside is cooling off so hopefully better tomorrow. I have been reacting like crazy to something for three days. My skin is frying up so bad I have a headache and my ears want to explode. So I have been going through everything new I have changed in last three days. I feel so bad for you. I would not wish this on my own worst enemy. God Bless and take care, Janet

December 23, 2002

hi janet,

i'm doing about the same. sorry your skin's burning so

bad....i haven't had that for awhile since we were finally able to

move. i'm not sure why the pleurisy is still bad....it

worries me about cross contamination even though

we haven't our belongings back yet.

t/c

linda

----- Original Message ----- From: Gingersnap1964@...

Sent: Friday, December 20, 2002 5:51 PM

Subject: Re: [] janet

, Hope you are doing better. This warm rainy weather is horrid. All I smell is mold here. Im in Maine. Tonight I notice air outside is cooling off so hopefully better tomorrow. I have been reacting like crazy to something for three days. My skin is frying up so bad I have a headache and my ears want to explode. So I have been going through everything new I have changed in last three days. I feel so bad for you. I would not wish this on my own worst enemy. God Bless and take care, Janet FAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.

May 24, 2003

Janet:I just read Niki's reply & will second what she told you. The STARband may have been around for just a few yrs right now, but other helmets/bands have been around for many many years.

Debbie Abby's mom DOCGrad MIjanethillusb <janethill00@...> wrote:

>>Our ortho had about 20 years experience with helmets and bands.Is this true? I'm not completely sure, but I don't think Bands have been around for 20 years. I am almost completely sure that the StarBand has only been around for a few years. Could someone please clarify this for me? *Janet

January 14, 2004

In a message dated 14/01/2004 15:15:36 Central Standard Time,

keywest212003@... writes:

> > >Thank you for your reply. I discontinuted Arava about 10 days ago

> and am still experiencing hair loss. I will be retested the end of

> January for the RA factor. If it is back up I will have to go back

> on one of the medications.

>

hi janet--i had the rash for a couple of months after stopping arava, and it

was about 4 months before my hair really started filling back in again. i did

not flush the arava from my system, just stopped taking it. cary

January 14, 2004

> Welcome to our group Janet. The hair loss (Alopecia) and rash are

common

> with Arava:

>

> " Overall, the incidence of transient hair loss with leflunomide was

9.7%;

> the effect was reversible upon discontinuation of treatment.

However, only 8

> (0.6%) patients withdrew from leflunomide treatment because of

Alopecia. In

> the controlled clinical trials, Alopecia was also more common in the

> leflunomide group than in the placebo group. Alopecia occurred more

> frequently with leflunomide than with methotrexate or

sulfasalazine. "

>

> http://www.aventispharmaindia.com/aravadq9.htm

>

> RX list has a lot of information on Arava:

> http://www.rxlist.com/cgi/generic3/leflunomide.htm

>

> a

>

> > Hi, My name is Janet. I have been suffering with RA for about a

> > year. I was on Methotrexate and Arava. The Methotrexate gave me

flu

> > like symptons which kept me out of work due to fever with

additional

> > side effects. I am still on Arava which has helped my RA Factor

go

> > down from 159 to 20, almost normal. The last few months I have

been

> > on Synthrod for an under active thryoid. Now my blood pressure

> > turned sky high and I am on Diovan. My most recent concern is a

> > sever rash and extreme loss of hair. Wanting to keep the hair I

have

> > left I was wondering if anyone with my condition had the same

> > concerns. If so do you know how the hair loss can be stopped and

> > what might be the cause. I would so appreciate your response.

> >

January 14, 2004

> Welcome to our group Janet. The hair loss (Alopecia) and rash are

common

> with Arava:

>

> " Overall, the incidence of transient hair loss with leflunomide was

9.7%;

> the effect was reversible upon discontinuation of treatment.

However, only 8

> (0.6%) patients withdrew from leflunomide treatment because of

Alopecia. In

> the controlled clinical trials, Alopecia was also more common in the

> leflunomide group than in the placebo group. Alopecia occurred more

> frequently with leflunomide than with methotrexate or

sulfasalazine. "

>

> http://www.aventispharmaindia.com/aravadq9.htm

>

> RX list has a lot of information on Arava:

> http://www.rxlist.com/cgi/generic3/leflunomide.htm

>

> a

>

> > Hi, My name is Janet. I have been suffering with RA for about a

> > year. I was on Methotrexate and Arava. The Methotrexate gave me

flu

> > like symptons which kept me out of work due to fever with

additional

> > side effects. I am still on Arava which has helped my RA Factor

go

> > down from 159 to 20, almost normal. The last few months I have

been

> > on Synthrod for an under active thryoid. Now my blood pressure

> > turned sky high and I am on Diovan. My most recent concern is a

> > sever rash and extreme loss of hair. Wanting to keep the hair I

have

> > left I was wondering if anyone with my condition had the same

> > concerns. If so do you know how the hair loss can be stopped and

> > what might be the cause. I would so appreciate your response.

> >

January 15, 2004

Janet, since, according to studies, Arava (leflunomide) has a long half

life and can also remain in the body for up to two years, people who

have toxicity problems with the drug sometimes undergo a " washout "

procedure in order to more quickly remove the drug from their system:

" Need for Drug Elimination

The active metabolite of leflunomide is eliminated slowly from the

plasma. In instances of any serious toxicity from ARAVA, including

hypersensitivity, use of a drug elimination procedure as described in

this section is highly recommended to reduce the drug concentration more

rapidly after stopping ARAVA therapy. If hypersensitivity is the

suspected clinical mechanism, more prolonged cholestyramine or charcoal

administration may be necessary to achieve rapid and sufficient

clearance. The duration may be modified based on the clinical status of

the patient. Cholestyramine given orally at a dose of 8 g three times a

day for 24 hours to three healthy volunteers decreased plasma levels of

M1 by approximately 40% in 24 hours and by 49 to 65% in 48 hours.

Administration of activated charcoal (powder made into a suspension)

orally or via nasogastric tube (50 g every 6 hours for 24 hours) has

been shown to reduce plasma concentrations of the active metabolite, M1,

by 37% in 24 hours and by 48% in 48 hours. These drug elimination

procedures may be repeated if clinically necessary. "

http://www.rxlist.com/cgi/generic3/leflunomide_wcp.htm

[ ] Re: Janet

> > >Thank you for your reply. I discontinuted Arava about 10 days ago

> and am still experiencing hair loss. I will be retested the end of

> January for the RA factor. If it is back up I will have to go back

> on one of the medications.

July 21, 2005

I use the tempurepedic pad for my bed. It is much cheaper than the entire mattress

and works great. I love it. So comfortable and I have RA, Ankylosing spondylitis, Osteo Arthritis,

Psoriatric Arthritis and other autoimmune problems.

I got mine at Bed, Bath and Beyond.

Lathrop

**********************************Hi all,I was wondering if anyone has had any luck with the temperpedic mattresses. I am in the market for a new bed and a nurse practitioner friend of mine said that all the doctors are recommending these for their patients with arthritis and or back problems. They are very expensive and I thought I'd better research a bit. Just wondering if anyone has any input. You can email me privately or on the list. Thanks. Janet

June 4, 2006

>

> Sorry Janet!

>

> I scan a few different groups for info that might help me (and where

I

> might be of assistance to others). I guess I lost track of how long

ago

> I posted. By DM, I meant dermatomyositis.

>

> Kind Regards,

>

that is ok I just did not know what it stands for so I needed

to ask thanks Janet IN IL

June 4, 2008

Hi Janet thanks so much for your response...

I also believe it is all inner related and the source of one problem.

Anyways to respond to the B 12 and calming teas...I used to get the B 12 Injections from ND at 6 pm at night...The B 12 Methyl sublingual and injections in 1,000 mcg is actually good for anxiety attacks which I do have as well. 1,000 Mcg is not much when you consider cyco 50 mg is often found in B complexes however cyco

must be converted by the liver so very little of that is really used by the body by the time it is converted...sublingual or injections of methyl are actually able to cross the brain barrier as well. I agree with you as far as diet....I did a detox when I first took sick

with Milk Thistle as well as no Red Meats, Cut out all dairy, all

sugar, soda, and caffiene reduced severely. I can not take magnesium due to Class D of IBS it simply triggers it.So really I did not look at it as slamming a bunch of supplements together and hope the problem goes away...I chose herbs or supplements that helped me to cope and I did become healthier due to all the choices I made just still sick but before I went on the herbs I lost so much weight my breast had cavities where they used to be...I now weigh 125 so I do feel the herbs benefited me as far as coping and aiding the problem....I was B 12 deficient which was contributing to some of my probems ...Silicon also helps with joint pain as it helps to build collagen...also makes an excellent skin toner. I try to use as little as possible to get what I need and so often I read something in the herbal store with way to many herbs in it and back on the shelf it goes...that is why I chose the individual herbs that worked best for the problems I had. Would be interested in hearing about the supplement you make though.

Lesa

Re: White willow for osteoporosis?

Try vitamin D3, I take anywhere from 4000 to 10,000 mg a day depending on how I feel.

MSM, cal mag, liquid glucosomine.... are all good.

Ailments

Dosage

Arthritis

Pills containing 37.5 mg salicin (white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid extract 3 times a day

Back Pain

40 mg salicin (white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid extract 3 times a day.

Chronic Pain

40-80 mg salicin (white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid extract 3 times a day

Muscle Aches and Pains

40 mg salicin (white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid extract 3 or 4 times a day

diana <gdiana07gmail> wrote:

had tests and was tol d i have osteoporosis. even tho i told the dr. ido not even take baby aspirin, he STILL gave me a prescription formotrin... i do have some white willow, however, have no idea how muchto take. can someone advise? or perhaps another remedy.thanks, diana------------------------------------

June 4, 2008

Hi Lesa,

I am often in too much of a rush when I

write these e-mails. I am sorry if I sounded accusing in any way. You sound

like you have a great attitude, which is key to beating this disease. If the

B12 does not make you hyper, then keep doing it. B vitamins are water soluble

and your body will only use what it needs and flush the rest. Please add ginger

root to your supplements. I think it will help with the joint pain,

inflammation, IBS, and nausea. And I would still recommend you have your hair

tested for levels of vitamins/minerals. If nothing else, the report will be

reassuring. Mine came back with extremely low manganese, which I would never

have guessed, so they can be useful in deciding what your body might needs and

what it has too much of.

And please feel free to e-mail me and talk

when you are feeling down. Talking to people who understood the illness helped

me put mine into remission.

Janet

From:

health

[mailto:health ] On Behalf Of Mystify

Sent: Tuesday, June 03, 2008 7:15

PM

To:

health

Subject: Re:

Janet

Hi Janet thanks so much for your response...

I also believe it is all inner related and the source of one

problem.

Anyways to respond to the B 12 and calming teas...I used to

get the B 12 Injections from ND at 6 pm at night...The B 12 Methyl sublingual

and injections in 1,000 mcg is actually good for anxiety attacks which I do

have as well. 1,000 Mcg is not much when you consider cyco 50 mg is often found

in B complexes however cyco

must be converted by the liver so very little of that is

really used by the body by the time it is converted...sublingual or

injections of methyl are actually able to cross the brain barrier as well.

I agree with you as far as diet....I did a detox when I first took sick

with Milk Thistle as well as no Red Meats, Cut out all

dairy, all

sugar, soda, and caffiene reduced severely. I can not take

magnesium due to Class D of IBS it simply triggers it.So really I did not look

at it as slamming a bunch of supplements together and hope the problem goes

away...I chose herbs or supplements that helped me to cope and I did

become healthier due to all the choices I made just still sick but before I

went on the herbs I lost so much weight my breast had cavities where they used

to be...I now weigh 125 so I do feel the herbs benefited me as far as

coping and aiding the problem....I was B 12 deficient which was contributing to

some of my probems ...Silicon also helps with joint pain as it helps to build

collagen...also makes an excellent skin toner. I try to use as little as possible

to get what I need and so often I read something in the herbal store with way

to many herbs in it and back on the shelf it goes...that is why I chose the

individual herbs that worked best for the problems I had. Would be interested

in hearing about the supplement you make though.

Lesa

Re: White willow for

osteoporosis?

Try vitamin D3, I

take anywhere from 4000 to 10,000 mg a day depending on how I feel.

MSM, cal mag,

liquid glucosomine.... are all good.

Ailments

Dosage

Arthritis

Pills containing

37.5 mg salicin (white willow bark's active ingredient) 3 times a day or 1/2

tsp. liquid extract 3 times a day

Back

Pain

40 mg salicin

(white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid

extract 3 times a day.

Chronic

Pain

40-80 mg salicin

(white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid

extract 3 times a day

Muscle

Aches and Pains

40 mg salicin

(white willow bark's active ingredient) 3 times a day or 1/2 tsp. liquid

extract 3 or 4 times a day

diana <gdiana07gmail>

wrote:

had tests and was

tol d i have osteoporosis. even tho i told the dr. i

do not even take baby aspirin, he STILL gave me a prescription for

motrin... i do have some white willow, however, have no idea how much

to take. can someone advise? or perhaps another remedy.

thanks, diana

------------------------------------

August 23, 2008

That truly is another loss. Please know that

my thoughts and prayers are with you.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

In a message dated 8/23/2008 6:32:32 P.M. Eastern Daylight Time,

zmiller@... writes:

Dear Group,

It is with a heavy heart that I report the loss of a dear CML Warrior.

Zavie

_____

From: Janet C. [mailto:_andejane@..._

(mailto:andejane@...) ]

Sent: August 23, 2008 5:06 PM

Zavie miller

Subject: Re: Janet

Dear Zavie,

This is Averitt, Jan 's partner. I am sorry to have to tell

you that Jan died on July 29 of a cardiac arrest in her sleep. She had been

doing very well and was up to 67 days of Gleevec at 400 mg. with few side

effects. She had a little nausea in the mornings, but it went away if she

ate earlier. Her hands were cracked, but getting better each day. She was

doing regular activities with only tiredness and a nap each day to slow her

down.

She really believed that she would show up in remission at the end of her 90

days as did I. This was a terrible shock although she had been going into

and out of atrial fib for the last six months. One week was in and the next

out, She never got to get to the cardioversion which was scheduled since

her heart went back into sinus rhythm on its own.

She was so impressed with you and appreciative of your responses to herself

and to the others on the CML site. I do not know for sure except from her

email, but you may not have heard from her for awhile. Had she written you

about our visit with Dr. Drucker in May? If not, we were so impressed with

he and Carolyn who were so genuine and helpful. They were so happy that her

CML had been discovered so early and had lots of confidence to share.

Apparently it wasn't the CML, but who can know which drugs interact with

which other drugs on a weakened heart. Her first heart episodes happened in

the late '80s with atrial fib then seemingly as a result of arthritis meds

and the episodes five years ago were the result of Vioxx she believed.

Whatever it was, it has caused the loss of an exceptional woman who is

beloved by thousands of students, faculty and staff of Idaho State

University where she worked for 31 years. We retired in 1998 and moved up

here to the lakes, trees, fish and wildlife and had a great ten years here.

We were fortunate and she had a " well-lived life. "

I will forward to you links about her from both here in Newport and at Idaho

State University, Pocatello, ID where she worked for 31 years.

And I would like to thank you for your contributions to her healthy attitude

and sense of optimism. She was an inspiration to all who knew her.

Sincerely, Averitt

_averkare@..._ (mailto:averkare@...)

Please inform the CML site members for her.

[Non-text portions of this message have been removed]

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

August 23, 2008

Dear Group,

It is with a heavy heart that I report the loss of a dear CML Warrior.

Zavie

_____

From: Janet C. [mailto:andejane@...]