New here

[Guest guest]

Thanks. My left eye went from 20/40 to 20/100 within 6 months of contracting

HCV. Now when I look at the eye chart at work, the big E is blurry without my

glasses.

Re: New Here

Hi Cathleen, I've had severe vision changes. Doctor said it was due to the

HCV. I have a friend who lost sight in one eye due to HCV. As soon as he gets

back to me I'll ask him why and let you know. Connie

Cathleen Strong <camost@...> wrote: My name is Cathleen. I was

diagnosed Feb 10th of this year. I was intentionally exposed to it June 18th of

last year. I currently have no intention of treating it, and so far have no

problems.

But, I've heard that HCV can affect your eyesight. What info I've found on the

web just mentions vision changes with a specific treatment or with coinfection

of HIV. Does anyone have any info about this?

Thanks.

Sometimes there are no good excuses.

[Guest guest]

On Oct 31, 2006, at 7:38 PM, vparnelld wrote:

> I feel

> like I've just taken on an unpaid part-time job and I'm not sure it's

> one I really want, but I don't think I have much of a choice!

Welcome to the list! There are a great bunch of people here.

I hate to start off your introduction with sarcasm, but just be

glad when it is only a part-time job. I went on a field trip

with my 10 yo a few weeks ago. I happened to sit by the teacher, who

I have MUCH less contact with than last year's teacher. LOL He asked

if I had any hobbies aside from helping my kids. I do, I just couldn't

think at the time, so I said that I talk to other parents with kids like

mine. I have spent entire weeks working on behavior plans, researching

not only parenting but teaching. I always aim to go into meetings

asking for reasonable things that fit as well as they can with what

normally happens in a classroom. We are making progress, though,

so it is ALL worth it.

Jackie

ph (10, Asperger's/ADHD)

(12, PDD-NOS/ADHD)

[Guest guest]

--- In , Jackie Geipel <jackie@...>

> I hate to start off your introduction with sarcasm, but just be

> glad when it is only a part-time job.

LOL Jackie -- I know I'm probably deluding myself thinking this is

just part-time, but I think self-delusion can be a very healthy coping

skill for times like this.

Thanks for the welcome

Vicki

[Guest guest]

Hello Vicki,

Just wanted to say 'hi' from your neighbour: I am located in Alberta.

Yes, I totally relate to what you said about 'taking on a new job'

because it does seem that way! Actually, my childrens' medical

issues led me to the work that I now do: I became a teacher's aide

and presently work for a rehabilitation agency so that I am able to

work hours on my own terms that reflect the needs of my family. I

was also asked to join a Council at our local children's hospital.

If you were to ask me a decade ago where I would be, never in a

million years would I have guessed, but I do like where the paths in

life are leading me (I actually was studying law prior to the birth

of my kids.)

Although I am sad that my children have challenges, I am beginning

to see light at the end of the tunnel - at times - towards a greater

purpose.

Welcome!

Velvet

>

> Hi, I've been " lurking " for a week or so, and just wanted to

introduce

> myself.

>

> My name is Vicki, I live in Vancouver, BC in Canada and I have an

11

> yo daughter newly identified as having AS. She is also gifted with

an

> IQ in the very superior range so her dad and I are kind of reeling

at

> this double whammy for our poor kid. I think the fact that she's so

> bright is what prevented us from seeing the AS. We needed to have

it

> pointed out to us by a psychologist we hired earlier this year to

> figure out if our daughter would qualify for gifted programming at

> school.

>

> The psychologist who did the assessment on my daughter is a local

> expert on AS and after spending a few minutes observing my 5 yo son

> suggested we bring him in as well, sooner rather than later. Given

the

> complaints we're hearing from his teacher (he just started

> kindergarten) I think we'll have more of a challenge dealing with

his

> issues, whatever they turn out to be, so we're pursuing assessment

for

> him in November.

>

> I'm grateful to find this group as the information people share

about

> their experiences is very helpful to me. In fact, my son just

started

> chewing his shirt sleeve and now thanks to all of you, I can add

this

> to my mental catalogue of possible Asperger's traits we have

noticed

> in him.

>

> I look forward to drawing on your wisdom in the future as I

attempt to

> be their " case managers " in and out of school. The way things work

in

> British Columbia is that the government will fund up to $20k/yr for

> under 6's and $6k/yr for 6-19 year olds for autism intervention

> programs. While this is very nice to have, the down side is that

they

> don't offer much help in terms of how to spend the money so I have

to

> do a lot of research right now to make sure I spend it wisely. I

feel

> like I've just taken on an unpaid part-time job and I'm not sure

it's

> one I really want, but I don't think I have much of a choice!

>

> Are there any other Vancouverites on this list, and if so will

anyone

> be at the Winner seminar next week?

>

> Vicki

>

[Guest guest]

Have you contacted you local Parent Information Training Center? They can

help you navigate the system and get information about writing a good IEP.

Does your son have a behavior plan? Are the incidents where he is restrained

documented? They cannot be sending him home on a routine basis for discipline

issues. That would be denying him FAPE (Free and Appropriate Public

Education). Pam

PARENT TRAINING AND INFORMATION PROJECTS

Sue Pratt, Executive Director

Citizens Alliance to Uphold Special Education (CAUSE)

3303 West Saginaw Street, Suite F1

Lansing, MI 48917-2303

(517) 886-9167; (800) 221-9105 (In MI)

E-mail: _info-cause@..._ (mailto:info-cause@...)

Jessie Mullins

Parents Training Parents Project/Parents are Experts

23077 Greenfield Road, Suite 205

Southfield, MI 48075-3744

(248) 557-5070 (V/TTY)

E-mail: ucpdetroit@...

[Guest guest]

Hi Pam,

I love what you post. Have you ever seen social skills broke down

per age or school year? I know a bunch of families that could use

this. Of course, this is all about getting it included into IEPs and

ARDs. I look forward to your great response........ :>)

Mark

, 19 year old son, Asperger

I am glad he is out of high school (we made it with great difficulty)

Enjoying working with him as a young man on social cognitive skills

all the time ........ :>)

>

> Have you contacted you local Parent Information Training Center?

They can

> help you navigate the system and get information about writing a

good IEP.

> Does your son have a behavior plan? Are the incidents where he is

restrained

> documented? They cannot be sending him home on a routine basis

for discipline

> issues. That would be denying him FAPE (Free and Appropriate

Public

> Education). Pam

>

> PARENT TRAINING AND INFORMATION PROJECTS

> Sue Pratt, Executive Director

> Citizens Alliance to Uphold Special Education (CAUSE)

> 3303 West Saginaw Street, Suite F1

> Lansing, MI 48917-2303

> (517) 886-9167; (800) 221-9105 (In MI)

> E-mail: _info-cause@..._ (mailto:info-cause@...)

>

> Jessie Mullins

> Parents Training Parents Project/Parents are Experts

> 23077 Greenfield Road, Suite 205

> Southfield, MI 48075-3744

> (248) 557-5070 (V/TTY)

> E-mail: ucpdetroit@...

>

>

>

[Guest guest]

HI Lynne: I am happy for you that you found this group and I am sorry you have

to find it.

I had similar symptoms to yours but did not progress that far. The connection

between nail fungus and PA was in my mind for many years. I had nail fungus may

be 10 or more years ago. I will tell the story of this nail fungus at the end.

I took Lamisil as you did. I think I recovered from it and stopped the

treatment prematurely (may be after one month, they recommend, I think, 3

months).

A few years after that, I notcied the pain in my ankles. then the P in the

ears, the scalp, the legs. I take Mobic now and then. I think the P on the

scalp can be treated, I am not doing any thing about it and because of my thick

hair it does not show. From time to time, I treat the two or three patches on

my right leg with whatever ointment the doctor gave me. I leave the left leg

untreated for comparision. It seems that the untreated leg is recovering

better.

How did I get the fungus in my nails. This shoe store was selling this pair

of the best shoes for about 10% of the price. They were great shoes of Italian

leather, etc. They were just a little tight for me. Just a little. I bought

them. I usually take a shower in the morning. Hot water, moist skin (not

enough time to dry it good), socks on, and then the tight shoes. In a day or

two, fungus started. It took a few months for the nails to actually look ugly.

The moral of the story is, you have to be comfortable in what you wear. don't

care about fashion....etc. You have to be comfortable. I feel sorry for some

teenagers showing their chest or stomach in freezing cold.

lynne_psa <deturemonica@...> wrote:

Hi Everyone,

I am recently diagnosed with PsA and am 35 years old. I wanted to

share my story of diagnosis and see if it sounds similar to any of

you out there.

I have had joint pain and back pains for quite a few years but

nothing I thought was terrible unusual. I also had minor p growing

up (behind my ears, on my scalp, and once I married on my ring

finger). I had actually never been told it was P just thought I had

really dry, sensitive skin. My dad had been told his scalp/ears were

P though so now it all makes sense.

Anyway, I got what I thought was a nail fungus on my left big toe

about 5 years ago and have been treated with Lamisil and other anti-

fungals several times to no avail.

Then, this past spring, I broke out with awful cystic acne on my

face, began to have terrible joint pain in my wrists, elbows, and

feet. At the same time my fingernails were (at least in my mind)

getting the same fungus from my toe. Then one day, I noticed that my

big toe had swollen to look like a drumstick. I figured the fungus

had gotten into my skin or something and thought I would start

running a fever or something. I didn't but not long after (maybe 2

weeks) my right index finger DIP joint swelled and then I knew

something was going on. I went to my dr. and just told him I was

tired and all these weird things were happening and I didn't know

why. I had also had recurring conjuctivities and styes and two back

to back ear infections. I was worn out and worried about what was

happening to me.

My doc told me he suspected PsA and referred me to a Rheumy. I had

to wait about 2 months to get in and I continued to get new swellings

in the meantime - the palms of my hands and other fingertips. I also

get pain in the backs of my knees. Turns out the Rheumy thinks PsA

also although my blood and x-rays are normal at this point. He puts

me on the napropac and wants me back in 8 weeks. He also sends me to

a dermatologist to have him confirm psoriatic nails. He does. The

naprapac doesn't seem to be getting rid of the swelling or the pain.

And I have missed several days of work because I am too tired to get

out of bed. This is very unusual for me. I have also spent one

Sunday in bed when I would in years past have been out Christmas

shopping all day.

I am supposed to go back to the Rheumy in early January and am not at

all sure what to expect. DO they check blood and x-rays every so

often?

Can any of you let me know what I can expect to have happen to me

over the next 6 months to a year or more?

Thank you for taking the time to read all this,

lynne

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

Everyone is raving about the all-new beta.

[Guest guest]

Lynne...sorry you had to seek us out but it's a good place to be in

your condition. Sounds like it's working you all over. It's good that

you are seeing a Rhuemy and a Dermy. You should strongly consider an

Opthalmologist too. I have an eye condition due to PA. It's not too

common among us but it can happen. A regular Optometrist cannot

diagnose this and you don't want to mess around with your eyes. As far

as what will happen to you in the future? There are very few diseases

that come with a guarantee of knowing how it will progress. Darlin...it

could all go away tomorrow and not show it's ugly little head for

years. But you have it so it would still be there doing it's damage

silently and sneakily. So be aggressive with your treatment. Doing so

will make you smarter than your disease is. I wish you all the best.

Welcome to the group. -Betz

[Guest guest]

Hi Lynne,

We do understand what you are going through and you will most likely find a

lot of relief in simply reading what others have been through with PA. Getting

the diagnosis is a relief in some ways, isn't it? At least now you can begin to

DO something about it. It took several years for me to be diagnosed, too. I

was 29 when my big toe morphed into a " drumstick " . I am 37 now, on Remicade and

feeling better than ever. Last summer I would have said otherwise. So, if there

is one thing I would want you to know, it is that this disease can surprise you.

You can feel really bad for a while, and then go into remission (naturally or

through meds). Be open with your doctor about your pain and be tenacious!

Kendrick

lynne_psa <deturemonica@...> wrote:

Hi Everyone,

I am recently diagnosed with PsA and am 35 years old. I wanted to

share my story of diagnosis and see if it sounds similar to any of

you out there.

I have had joint pain and back pains for quite a few years but

nothing I thought was terrible unusual. I also had minor p growing

up (behind my ears, on my scalp, and once I married on my ring

finger). I had actually never been told it was P just thought I had

really dry, sensitive skin. My dad had been told his scalp/ears were

P though so now it all makes sense.

Anyway, I got what I thought was a nail fungus on my left big toe

about 5 years ago and have been treated with Lamisil and other anti-

fungals several times to no avail.

Then, this past spring, I broke out with awful cystic acne on my

face, began to have terrible joint pain in my wrists, elbows, and

feet. At the same time my fingernails were (at least in my mind)

getting the same fungus from my toe. Then one day, I noticed that my

big toe had swollen to look like a drumstick. I figured the fungus

had gotten into my skin or something and thought I would start

running a fever or something. I didn't but not long after (maybe 2

weeks) my right index finger DIP joint swelled and then I knew

something was going on. I went to my dr. and just told him I was

tired and all these weird things were happening and I didn't know

why. I had also had recurring conjuctivities and styes and two back

to back ear infections. I was worn out and worried about what was

happening to me.

My doc told me he suspected PsA and referred me to a Rheumy. I had

to wait about 2 months to get in and I continued to get new swellings

in the meantime - the palms of my hands and other fingertips. I also

get pain in the backs of my knees. Turns out the Rheumy thinks PsA

also although my blood and x-rays are normal at this point. He puts

me on the napropac and wants me back in 8 weeks. He also sends me to

a dermatologist to have him confirm psoriatic nails. He does. The

naprapac doesn't seem to be getting rid of the swelling or the pain.

And I have missed several days of work because I am too tired to get

out of bed. This is very unusual for me. I have also spent one

Sunday in bed when I would in years past have been out Christmas

shopping all day.

I am supposed to go back to the Rheumy in early January and am not at

all sure what to expect. DO they check blood and x-rays every so

often?

Can any of you let me know what I can expect to have happen to me

over the next 6 months to a year or more?

Thank you for taking the time to read all this,

lynne

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

Everyone is raving about the all-new beta.

[Guest guest]

Hello Lynne,

Wish I could tell you what lies ahead, but PA takes a different course with

different people.

Like you, I had only minor psorisis, " problem skin " I called it, with a good

number of minor

physical complaints that I personally tossed off as just a part of the aging

process. Like

you, I didn't know it was something to worry about until I had a major flare and

just about

lost the use of my hands. Unlike you, I was 55 before getting a diagnosis.

There was a

three month wait before I could get in to see the rheumatologist. Now I advise

everyone

my age to go on and establish a patient/doctor relationship with a rheumy, even

if they

don't think they need one! My rheumy will do a " work in " if symptoms worsen,

but there's

still a two-month wait for scheduled appts.

I can truly identify with your inability to shop, lol. I used to be one of

those " shop til you

drop " people, but now just the idea of parking, walking, standing all that time

wears me

out. Thank heaven for internet shopping!

My blood work looked fine at time of my first visit to rheumy. He first put me

on Mobic,

had MRI run that confirmed compressed & ruptured cervical discs, sent me to a

physical

therapist who noted the heat and swelling in my knees. I had noticed it

myself...could

barely make it up the stairs... The PT called the rheumy and said " Please see

her again, "

which he did. Sed rate high. Fluid on knees that had to be aspirated, once,

twice, three

times, etc. in space of six weeks. Rheumy got more aggressive. Added Arava to

the

Mobic, gave me Tramadol for pain (which helps most days, but not the worst).

Started me

on Prednisone. I give credit to the Prenisone for the remarkable improvement I

noticed

after about two weeks. Have now tapered off the Prednisone entirely, still

taking Arava

and Mobic. Rheumy also added Fish Oil capsules and DHEA to the mix. Have had

several

flares since beginning the meds, but NOTHING like that major one that sent me

running to

a rheumy in the first place. I do have blood work done every six weeks to check

liver

function and other things. Had baseline X-rays done early on and will probably

have

another set done sometime this year. I'm lucky in that my spine is not

afflicted, hips only a

bit. My hands (fingers and wrists), feet, ankles, and knees are the main areas.

The fatigue...such a bore. I have to parcel out my energy sparingly in order to

do the

things I must do. Amazing how many things you can manage without doing.

Housekeeping was the first to go. My husband now does all the grocery

shopping...after

30 years of doing it myself, all the charms had worn off anyway, so I don't miss

it! If all

this had happened when my daughter was young, it would have been much harder to

manage. From what I can tell from reading posts, it's amazing how well most

families,

including kids, rise to the challenge when need calls.

Sorry to ramble. It's hard to know what to expect next with PA, but one thing

about this

group is that there's bound to be someone else who has gone through something

very

similar.

Lucia

>

> Hi Everyone,

>

> I am recently diagnosed with PsA and am 35 years old. I wanted to

> share my story of diagnosis and see if it sounds similar to any of

> you out there...... Can any of you let me know what I can expect to have

happen to me

> over the next 6 months to a year or more?

>

> Thank you for taking the time to read all this,

> lynne

>

[Guest guest]

Welcome!!!! I was reading an earlier message that suggested (noted not by doctors) that memory foam has helped their baby. The message suggested purchasing a twin sized pad and cutting it down to fit in the crib. I think this is a great idea, as long as the baby is old enough. By 8 months, your baby is certainly strong enough to mover her head to breathe better if she needs to. Good luck and happy sleeping! michelle-- (jackson's @ 6.5 months and we are STILL trying to get him into a helmet-friendly doctor/hospital!)

Want to start your own business? Learn how on Small Business.

[Guest guest]

Hi Barbi,

It is probably going to be a little harder to get her to wear it more

now that she's realized if she fusses you'll take it off. If it fits

okay she should get used to sleeping in it quickly. My daughter had a

hard time and we ended up cosleeping. i know that wouldn't work for

everyone.

our ortho also recommended we could put her to sleep without it, then

slip it on while she slept. not sure how heavy a sleeper your daughter

is. I think once she's wearng it full time the sweating will start

improving. right now her body has to regulate her temp with it on half

time and off half time. when it is on all the time it will resolve.

Also if she is sweating dress her lightly.

i think someone else mentioned memory foam. we put it under the crib

sheet and she slept better. she still woke up too much, so we went to

cosleeping, but the foam might work for you. we got a twin size memory

foam mattress pad at target and cut it down. Also at around 9 mo

sydney started sleeping on her tummy. maybe you can try putting your

daughter that way and she is she's more comfortable.

good luck with it.

-christine

mom to sydney/ 11 mo/ starband grad 10-06

>

> Hi Everyone,

>

> My daughter is 8 months 3 weeks. She has had her helmet for

> about 3 weeks and wears it for 12-15 hours on most days. I can't seem

> to get her to sleep in it. Any suggestions?? She has a mild to

> moderate case of plagiocephaly and the ortho has already in the short

> time felt movement of the bones. I was very blessed that my insurance

> company paid 100% right off the bat. I thought I would be in for a

> fight. I also am concered about the sweating, does that get any

> better?? Any help or suggestion would be greatful. Thanks!!

>

> Barbi

>

[Guest guest]

Thank you all for the welcome and the information and for just being

there. I think I have read every post on this board in the last

couple of weeks and I have learned alot. I have bought a pair of

Dansko shoes and am keeping a journal of what hurts and what is

swollen day to day so I can try not to forget things when I see the

rheumy again.

Did anyone else get acne with PsA? I swear I never had more than 1-3

pimples at a time all throughout puberty and teenagedom, but right as

this all started flaring I got the worst case of painful cystic acne

I have ever seen. I was put on oral antibiotics and retina-micro and

evoclin. I have stopped taking the oral b.c it seemed to give me

mental fog which I do not need. However, the acne seems to be coming

back since I dropped that and I may need to go back on it. I have

read that some arthritis related syndromes include acne like SAPHO,

so was just curious if any of you had this experience as well.\

Thanks and take care,

Lynne

>

> Hi Everyone,

>

> I am recently diagnosed with PsA and am 35 years old. I wanted to

> share my story of diagnosis and see if it sounds similar to any of

> you out there.

>

> I have had joint pain and back pains for quite a few years but

> nothing I thought was terrible unusual. I also had minor p growing

> up (behind my ears, on my scalp, and once I married on my ring

> finger). I had actually never been told it was P just thought I

had

> really dry, sensitive skin. My dad had been told his scalp/ears

were

> P though so now it all makes sense.

>

> Anyway, I got what I thought was a nail fungus on my left big toe

> about 5 years ago and have been treated with Lamisil and other anti-

> fungals several times to no avail.

>

> Then, this past spring, I broke out with awful cystic acne on my

> face, began to have terrible joint pain in my wrists, elbows, and

> feet. At the same time my fingernails were (at least in my mind)

> getting the same fungus from my toe. Then one day, I noticed that

my

> big toe had swollen to look like a drumstick. I figured the fungus

> had gotten into my skin or something and thought I would start

> running a fever or something. I didn't but not long after (maybe 2

> weeks) my right index finger DIP joint swelled and then I knew

> something was going on. I went to my dr. and just told him I was

> tired and all these weird things were happening and I didn't know

> why. I had also had recurring conjuctivities and styes and two back

> to back ear infections. I was worn out and worried about what was

> happening to me.

>

> My doc told me he suspected PsA and referred me to a Rheumy. I had

> to wait about 2 months to get in and I continued to get new

swellings

> in the meantime - the palms of my hands and other fingertips. I

also

> get pain in the backs of my knees. Turns out the Rheumy thinks PsA

> also although my blood and x-rays are normal at this point. He

puts

> me on the napropac and wants me back in 8 weeks. He also sends me

to

> a dermatologist to have him confirm psoriatic nails. He does. The

> naprapac doesn't seem to be getting rid of the swelling or the

pain.

> And I have missed several days of work because I am too tired to

get

> out of bed. This is very unusual for me. I have also spent one

> Sunday in bed when I would in years past have been out Christmas

> shopping all day.

>

> I am supposed to go back to the Rheumy in early January and am not

at

> all sure what to expect. DO they check blood and x-rays every so

> often?

>

> Can any of you let me know what I can expect to have happen to me

> over the next 6 months to a year or more?

>

> Thank you for taking the time to read all this,

> lynne

>

[Guest guest]

Hi, Lynne

When I was looking online, I did see some sites that said that there is some

link between

acne and PA. There certainly has been a connection for me. When I was 23 (I'm

29 now), I

had my first flare. I had no clue what was happening to me at the time; I have

only known

that I have PA for a few months now. I was a model working in NYC when that

first flare

happened. My mother was diagnosed with cancer right before the flare, so I

believe (in

hindsight) that is what initially set it off. Within a few months, my skin

broke out (making

it impossible for me to work), I kept " injuring " myself (wrists, knee, stiffness

in big toes)

doing yoga and running, and I became horribly tired and depressed. I really

didn't want to

leave my apartment at all most of the time. I was so embarassed about my

situation that I

didn't get any help for it. Eventually, the acne, most of the pain in my

joints, and the

depression all went away. Back then, I did see a dermatologist who prescribed

me some

sulfa drug (can't remember the name) that helped me soooo much, but for a

limited time.

I have always had sensitive, blotchy skin, but no typical Psoriasis. I have

ridges on the

nails on swollen thumbs which was a big indicator to doctor (along with the

morning

stiffness in my back and neck). Luckily, I only have mild, occasional breakouts

these days

because I really " baby " my skin. I would recommend using mild unscented face

soap and

glycolic pads (before bedtime). Find some products that work and stick with

them. My

skin gets really aggrivated when I keep switching products.

If there is anything else that you need, you can always email me

Jill

> >

> > Hi Everyone,

> >

> > I am recently diagnosed with PsA and am 35 years old. I wanted to

> > share my story of diagnosis and see if it sounds similar to any of

> > you out there.

> >

> > I have had joint pain and back pains for quite a few years but

> > nothing I thought was terrible unusual. I also had minor p growing

> > up (behind my ears, on my scalp, and once I married on my ring

> > finger). I had actually never been told it was P just thought I

> had

> > really dry, sensitive skin. My dad had been told his scalp/ears

> were

> > P though so now it all makes sense.

> >

> > Anyway, I got what I thought was a nail fungus on my left big toe

> > about 5 years ago and have been treated with Lamisil and other anti-

> > fungals several times to no avail.

> >

> > Then, this past spring, I broke out with awful cystic acne on my

> > face, began to have terrible joint pain in my wrists, elbows, and

> > feet. At the same time my fingernails were (at least in my mind)

> > getting the same fungus from my toe. Then one day, I noticed that

> my

> > big toe had swollen to look like a drumstick. I figured the fungus

> > had gotten into my skin or something and thought I would start

> > running a fever or something. I didn't but not long after (maybe 2

> > weeks) my right index finger DIP joint swelled and then I knew

> > something was going on. I went to my dr. and just told him I was

> > tired and all these weird things were happening and I didn't know

> > why. I had also had recurring conjuctivities and styes and two back

> > to back ear infections. I was worn out and worried about what was

> > happening to me.

> >

> > My doc told me he suspected PsA and referred me to a Rheumy. I had

> > to wait about 2 months to get in and I continued to get new

> swellings

> > in the meantime - the palms of my hands and other fingertips. I

> also

> > get pain in the backs of my knees. Turns out the Rheumy thinks PsA

> > also although my blood and x-rays are normal at this point. He

> puts

> > me on the napropac and wants me back in 8 weeks. He also sends me

> to

> > a dermatologist to have him confirm psoriatic nails. He does. The

> > naprapac doesn't seem to be getting rid of the swelling or the

> pain.

> > And I have missed several days of work because I am too tired to

> get

> > out of bed. This is very unusual for me. I have also spent one

> > Sunday in bed when I would in years past have been out Christmas

> > shopping all day.

> >

> > I am supposed to go back to the Rheumy in early January and am not

> at

> > all sure what to expect. DO they check blood and x-rays every so

> > often?

> >

> > Can any of you let me know what I can expect to have happen to me

> > over the next 6 months to a year or more?

> >

> > Thank you for taking the time to read all this,

> > lynne

> >

>

[Guest guest]

As a liver cancer victim I have given up meats, refine sugar and

fried foods. I am also eating as much raw fruits and veggies as I

can. Do a web search on diets for cancer. I am also eating apricot

kernels which has vitamin B17, you can do a search for this as well.

Good luck with your brother.

Donna Gail

In Hepatitis C , " lucynwidskid "

<lucynwidskid@...> wrote:

>

> My name is Darcy. My Brother has had Hep C for years. Just found

out

> in the past couple of months that he has liver cancer. Ann Arbor

sent

> him home and told him to call hospice....so he tried Cancer

treatment

> Centers of America...they after a few weeks said the same. He is

now

> doing some herbal stuff. I kinda didn't think it would be like

> this...I thought his liver would be fine for some time, then if he

> needed a new one ...I would surely give him part of mine....but

this

> changes the senario...He can't have Chemo. He can't have a

> transplant...he is I believe 48 years old. A really nice guy.

>

> Anyway, I plan to read the achives here to see if I can find some

> information that will be helpful in his situation. He hasn't

given up

> and is living his life. Using the powerful tool of prayer.

>

> Nice to meet you and thanks in advance for any good tips...

>

> Darcy :0)

>

[Guest guest]

Thanks so much Jill,

It is sad, but my flare this time and the ensuing diagnosis also came

after my mother was diagnosed and being treated for a malignant brain

tumor. Very stressful indeed. She is doing very well considering,

but I am sure my flare is related also.

Thanks again for your response and I will take your advice on the

skincare. I use Clinique mild facial soap and am on evoclin for the

acne. It is doing pretty well right now - only one big pimple at the

moment.

Happy holidays!

>

> Hi, Lynne

> When I was looking online, I did see some sites that said that

there is some link between

> acne and PA. There certainly has been a connection for me. When I

was 23 (I'm 29 now), I

> had my first flare. I had no clue what was happening to me at the

time; I have only known

> that I have PA for a few months now. I was a model working in NYC

when that first flare

> happened. My mother was diagnosed with cancer right before the

flare, so I believe (in

> hindsight) that is what initially set it off. Within a few months,

my skin broke out (making

> it impossible for me to work), I kept " injuring " myself (wrists,

knee, stiffness in big toes)

> doing yoga and running, and I became horribly tired and depressed.

I really didn't want to

> leave my apartment at all most of the time. I was so embarassed

about my situation that I

> didn't get any help for it. Eventually, the acne, most of the pain

in my joints, and the

> depression all went away. Back then, I did see a dermatologist who

prescribed me some

> sulfa drug (can't remember the name) that helped me soooo much, but

for a limited time.

> I have always had sensitive, blotchy skin, but no typical

Psoriasis. I have ridges on the

> nails on swollen thumbs which was a big indicator to doctor (along

with the morning

> stiffness in my back and neck). Luckily, I only have mild,

occasional breakouts these days

> because I really " baby " my skin. I would recommend using mild

unscented face soap and

> glycolic pads (before bedtime). Find some products that work and

stick with them. My

> skin gets really aggrivated when I keep switching products.

> If there is anything else that you need, you can always email me

>

> Jill

[Guest guest]

Keeping you and your family in my prayers during this season that can

be particularly difficult when you are caring for loved ones that are

ill. Love Betz

[Guest guest]

they don't usually do chemo.... why not transplant????????? you darling, would

give him part

of yours but the size and match .... well...... please give more info on how it

got so far.....

in loving support bringing tears to my eyes, sally

>

> My name is Darcy. My Brother has had Hep C for years. Just found out

> in the past couple of months that he has liver cancer. Ann Arbor sent

> him home and told him to call hospice....so he tried Cancer treatment

> Centers of America...they after a few weeks said the same. He is now

> doing some herbal stuff. I kinda didn't think it would be like

> this...I thought his liver would be fine for some time, then if he

> needed a new one ...I would surely give him part of mine....but this

> changes the senario...He can't have Chemo. He can't have a

> transplant...he is I believe 48 years old. A really nice guy.

>

> Anyway, I plan to read the achives here to see if I can find some

> information that will be helpful in his situation. He hasn't given up

> and is living his life. Using the powerful tool of prayer.

>

> Nice to meet you and thanks in advance for any good tips...

>

> Darcy :0)

>

[Guest guest]

sorry don't slam me.... hep c is an STD especially for non married, multiple sex

partners....new kinds of sex.... etc...... scizzors, towels, razors.... they

even say it is in

toothbrush spit............... it is sexually transmitted....... don't want to

get graphic. before

they were examining married couples..... regular kinda boring soft sex........

not so with

singles....... scratches, sizes...... get the picture........ it is sexusally

transmitted..... please

people..... I know lots of people who got it from SEX........ even married

couples after many

years get it.... as I stated in one post call 1 800 Go Liver and get the

pamphlet....

misinformation can kill us and our families........ I don't want to scare. I

have been around

for many years and had my own groups and now do research for doctors.........

they are

even saying it is in saliva..... tears........ not std??????? ok better safe

than sorry............

married couples, who have regular ..... anhyway, I'll probably get slammed

but Zi don't

want anyone believiing untruths and passing it along to lovers, children or

whatever.......

love to you all, better go..... please don't slam me......... I do tooo much

research and have

been on these boards over 11 years...... STD YES

> We think he got it from his ex-wife who was an IV drug user. They

> divorced in 1992, and she died in 2004 from complications from having

> part of her liver removed. We don't know for sure she had Hep C but I

> guess if she did it doesn't matter to us now.

>

>

>

>

>

>

>

>

[Guest guest]

HCV goes blood to blood, so transfer through sex is not an issue unless

blood is exchanged.

that happens easily with anal intercourse. can happen if a woman has a

ondition wher she dosn't lubricate.

generally, if blood is exchanged during sex you're doing something wrong,

even if it's a matter of preference...

cheers,

bobL

myspace: http://www.myspace.com/bob021147

ebay: http://stores.ebay.com/bobLs-fine-flotsam

homepage: http://www.toad.net/~blarson/

> Re: New Here

>

>

> sorry don't slam me.... hep c is an STD especially for non

> married, multiple sex

> partners....new kinds of sex.... etc...... scizzors, towels,

> razors.... they even say it is in

> toothbrush spit............... it is sexually transmitted.......

> don't want to get graphic. before

> they were examining married couples..... regular kinda boring

> soft sex........ not so with

> singles....... scratches, sizes...... get the picture........ it

> is sexusally transmitted..... please

> people..... I know lots of people who got it from SEX........

> even married couples after many

> years get it.... as I stated in one post call 1 800 Go Liver and

> get the pamphlet....

> misinformation can kill us and our families........ I don't want

> to scare. I have been around

> for many years and had my own groups and now do research for

> doctors......... they are

> even saying it is in saliva..... tears........ not std??????? ok

> better safe than sorry............

> married couples, who have regular ..... anhyway, I'll

> probably get slammed but Zi don't

> want anyone believiing untruths and passing it along to lovers,

> children or whatever.......

> love to you all, better go..... please don't slam me......... I

> do tooo much research and have

> been on these boards over 11 years...... STD YES

>

>

>

>

>

> > We think he got it from his ex-wife who was an IV drug user. They

> > divorced in 1992, and she died in 2004 from complications from having

> > part of her liver removed. We don't know for sure she had Hep C but I

> > guess if she did it doesn't matter to us now.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

semi-correction:

i've read about HCV being found in semen & saliva, but t would still have to

get to the other person's blood.

cheers,

bobL

myspace: http://www.myspace.com/bob021147

ebay: http://stores.ebay.com/bobLs-fine-flotsam

homepage: http://www.toad.net/~blarson/

> Re: New Here

> >

> >

> > sorry don't slam me.... hep c is an STD especially for non

> > married, multiple sex

> > partners....new kinds of sex.... etc...... scizzors, towels,

> > razors.... they even say it is in

> > toothbrush spit............... it is sexually transmitted.......

> > don't want to get graphic. before

> > they were examining married couples..... regular kinda boring

> > soft sex........ not so with

> > singles....... scratches, sizes...... get the picture........ it

> > is sexusally transmitted..... please

> > people..... I know lots of people who got it from SEX........

> > even married couples after many

> > years get it.... as I stated in one post call 1 800 Go Liver and

> > get the pamphlet....

> > misinformation can kill us and our families........ I don't want

> > to scare. I have been around

> > for many years and had my own groups and now do research for

> > doctors......... they are

> > even saying it is in saliva..... tears........ not std??????? ok

> > better safe than sorry............

> > married couples, who have regular ..... anhyway, I'll

> > probably get slammed but Zi don't

> > want anyone believiing untruths and passing it along to lovers,

> > children or whatever.......

> > love to you all, better go..... please don't slam me......... I

> > do tooo much research and have

> > been on these boards over 11 years...... STD YES

> >

> >

> >

> >

> >

> > > We think he got it from his ex-wife who was an IV drug user. They

> > > divorced in 1992, and she died in 2004 from complications from having

> > > part of her liver removed. We don't know for sure she had Hep C but I

> > > guess if she did it doesn't matter to us now.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

well ten years ago they said it was not in breast milk...... if it is in

anything....... anything......... it is passed...... not easily and not

with one contact..... why do you think they say do not use towels? hair

brushes? makeup? Bob, things are changing and if they found it in saliva

or tear ducts or bodily fluids..... hon, you take that chance...........

love ya, sally

--- bob Larson <bobLists@...> wrote:

> semi-correction:

> i've read about HCV being found in semen & saliva, but t would still

> have to

> get to the other person's blood.

>

> cheers,

> bobL

>

> myspace: http://www.myspace.com/bob021147

> ebay: http://stores.ebay.com/bobLs-fine-flotsam

> homepage: http://www.toad.net/~blarson/

>

> > Re: New Here

> > >

> > >

> > > sorry don't slam me.... hep c is an STD especially for non

> > > married, multiple sex

> > > partners....new kinds of sex.... etc...... scizzors, towels,

> > > razors.... they even say it is in

> > > toothbrush spit............... it is sexually transmitted.......

> > > don't want to get graphic. before

> > > they were examining married couples..... regular kinda boring

> > > soft sex........ not so with

> > > singles....... scratches, sizes...... get the picture........ it

> > > is sexusally transmitted..... please

> > > people..... I know lots of people who got it from SEX........

> > > even married couples after many

> > > years get it.... as I stated in one post call 1 800 Go Liver and

> > > get the pamphlet....

> > > misinformation can kill us and our families........ I don't want

> > > to scare. I have been around

> > > for many years and had my own groups and now do research for

> > > doctors......... they are

> > > even saying it is in saliva..... tears........ not std??????? ok

> > > better safe than sorry............

> > > married couples, who have regular ..... anhyway, I'll

> > > probably get slammed but Zi don't

> > > want anyone believiing untruths and passing it along to lovers,

> > > children or whatever.......

> > > love to you all, better go..... please don't slam me......... I

> > > do tooo much research and have

> > > been on these boards over 11 years...... STD YES

> > >

> > >

> > >

> > >

> > >

> > > > We think he got it from his ex-wife who was an IV drug user.

> They

> > > > divorced in 1992, and she died in 2004 from complications from

> having

> > > > part of her liver removed. We don't know for sure she had Hep C

> but I

> > > > guess if she did it doesn't matter to us now.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

ok a bit graphic..... new lover...... lust..... awkward........

scratch...... boom gotcha......... and now with the new research they are

evaluating whether or not it is in other fluids............. but 99.9% you

are right...... sure wouldn't want someone I cared about to be the other

1/10%.......... please please everyone.... get the pamphlet from alf......

1-800- GO Liver........ they are finally learning more and bob I love ya

guy and you know it...... but don't get stuck in last year's

research........... and in most bodily fluids is blood

anyway.............. look under microscope.... just be careful out

there.......... please........ I only know what I know about transmission

from PEOPLE I KNOW......... AND research I do...... love ya really.......

just keep reading and learning...... so far it is like HIV was 20 yrs

ago........ in what they know.......... still love me?

--- bob Larson <bobLists@...> wrote:

> HCV goes blood to blood, so transfer through sex is not an issue unless

> blood is exchanged.

> that happens easily with anal intercourse. can happen if a woman has a

> ondition wher she dosn't lubricate.

> generally, if blood is exchanged during sex you're doing something

> wrong,

> even if it's a matter of preference...

>

> cheers,

> bobL

>

> myspace: http://www.myspace.com/bob021147

> ebay: http://stores.ebay.com/bobLs-fine-flotsam

> homepage: http://www.toad.net/~blarson/

>

> > Re: New Here

> >

> >

> > sorry don't slam me.... hep c is an STD especially for non

> > married, multiple sex

> > partners....new kinds of sex.... etc...... scizzors, towels,

> > razors.... they even say it is in

> > toothbrush spit............... it is sexually transmitted.......

> > don't want to get graphic. before

> > they were examining married couples..... regular kinda boring

> > soft sex........ not so with

> > singles....... scratches, sizes...... get the picture........ it

> > is sexusally transmitted..... please

> > people..... I know lots of people who got it from SEX........

> > even married couples after many

> > years get it.... as I stated in one post call 1 800 Go Liver and

> > get the pamphlet....

> > misinformation can kill us and our families........ I don't want

> > to scare. I have been around

> > for many years and had my own groups and now do research for

> > doctors......... they are

> > even saying it is in saliva..... tears........ not std??????? ok

> > better safe than sorry............

> > married couples, who have regular ..... anhyway, I'll

> > probably get slammed but Zi don't

> > want anyone believiing untruths and passing it along to lovers,

> > children or whatever.......

> > love to you all, better go..... please don't slam me......... I

> > do tooo much research and have

> > been on these boards over 11 years...... STD YES

> >

> >

> >

> >

> >

> > > We think he got it from his ex-wife who was an IV drug user. They

> > > divorced in 1992, and she died in 2004 from complications from

> having

> > > part of her liver removed. We don't know for sure she had Hep C but

> I

> > > guess if she did it doesn't matter to us now.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

In a message dated 12/18/2006 2:31:57 P.M. Pacific Standard Time,

deturemonica@... writes:

is sad, but my flare this time and the ensuing diagnosis also came

after my mother was diagnosed and being treated for a malignant brain

tumor.

, I am dealing with something similar with my dad (GBM). Feel free to

email me offline if you need to talk to someone about where to go for brain

tumor information, etc.

[Guest guest]

Congratulations Maggie, You have just done an awesome thing for yourself AND

for your family. I can understand your hubby's point of view - after all we

were brainwashed for over 50 yrs.- don't push him. Just let him sit and watch

as you transform magically before his eyes. He will soon get the idea.

I gained 65 lbs when I quit smoking several years ago. Hard as i tried

nothing would get that weight down. After 4 months on VCO and Kefir I have

lost already 30 pounds without dieting at all. I eat anything I want - they

key is you just don't want as much- and my craving for sweets is GONE !

Thats a miracle in itself- I've been addicted to sugar almost all my life -

save the first 6 months and this last 4.

Huggs

zoe

Friday, December 22, 2006, 8:47:37 AM, you wrote:

> Hi all, I'm Maggie, new to this group and also new to using coconut oil. I

sort of stumbled

> across it and got one of those aha moments when I felt I had found something

very

> worthwhile. From my own perspective, I fear that I do this a lot. That is,

stumble over

> something 'new' to me and get very excited for awhile about what it can do

only to let it

> drop some time later before finding another 'new' thing. I have actually

known about

> coconut oil for a very long time but never got the aha until a week or 2 ago,

so....

> I am reading some books on using coconut oil, for health in general, but more

specifically

> for losing weight. I have always been thin and think of myself that way, but

after my

> second son was born 9 years ago I have put on at least 80 - 100 pounds and

believe it or

> not, I had no idea it was happening since I refuse to weigh myself. But I have

seen some

> pictures taken of me these past few years and I am utterly shocked and

horrified. Also

> discouraged since I don't feel I overeat.

> To add to all this, my youngest son is now quite heavy, too, and I feel

distraught over it

> and want to help him in ways that keep his own thoughts positive. I am hoping

that

> adding coconut oil will be a slight little change that may bring about greater

change for

> the better.

> Also, my husband has swallowed the conventional wisdom about saturated fats

and all

> that and is very hesitant to make a change to this fat. He was quite anxious

when I told

> him I had melted some in water and drank it. Very odd, to both of us!

> Long story here, so I am grateful for those of you who have persevered!

Looking forward

> to meeting others here with success and how I can learn from you.

> Maggie