Re: Digest Number 618

[Guest guest]

> Date: Sun, 23 Jan 2000 14:17:01 -0500 (EST)

> From: YooperMo@... (Monika)

> Subject: Costs

>

> I am curious as to what you are spending monthly on vitamins, teas,

> treatments, special foods, ect.

>

>

>

> Monika

> Severe Fibromyalgia 1YR

> Ultram, Paxil

Uninsured: $64.40 RA SPES (10/wk - 40/mo)

$ 8.60 Doxycycline ($24.29 for 180 caps at Costco)

------

$73.00/mo

This is a semi-accurate picture. Since the RA SPES put me into remission

last year my intake of it now varies up/down depending on the reactions

I'm getting to the doxy, foods, etc. I still take it daily, but often

only 1d. (Remember, remission=sleep, not cure.) Nowadays it's usually

around 10/wk vs the 14/wk it would be if I was on 2/d, or the 28 it was

when I was on 4/d. The doxy is steady at 2-100mg caps/daily. That was

the best price/qty combination I could get locally.

HTH

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save mankind

ICQ 60333388

[Guest guest]

>I will contact

>her to

>> > find out doctor's name and name of supplement.

Could you also find out what it was she did to get better? best, -E

[Guest guest]

To AJ...you are forgiven and we understand :-)

How is Holly doing after all the vacationing?

Donna

[Guest guest]

Thanks for forgiving me :-) Holly is holding up very well, last week we

decreased her mtx to 7.5mgs, it will stay that way for a month if nothing

changes we go down to 5mgs for a month and so on...................cross your

fingers, holly has only been drug free for 2 months since she was 8 months

old AJ

[Guest guest]

I think you would be a positive addition to this group I know I find it

nice to talk to adults who have lived through what my daughter is living

with. May I ask your name? Welcome to the group!

[Guest guest]

Hi everyone,

Not at all sure if this is an appropriate forum for me. I have JRA, but I am now

46 years old.

Care2 make the world greener !

[Guest guest]

AJ,

I'm so happy to hear that Holly is continuing to do well. Hopefully

these decreases in her MTX won't cause any trouble. I understand how you

must be feeling. It's like walking on eggshells, sometimes. While we're

optimistic and hoping for the best, there always seem to be those

worries in the back of your mind, remembering what it used to be like.

Your family will be in our thoughts

All the best,

Georgina

ajaomom@... wrote:

> Thanks for forgiving me :-) Holly is holding up very well, last week we

> decreased her mtx to 7.5mgs, it will stay that way for a month if nothing

> changes we go down to 5mgs for a month and so on...................cross your

> fingers, holly has only been drug free for 2 months since she was 8 months

> old AJ

[Guest guest]

Thanks for the good thoughts Georgina :-)

[Guest guest]

In a message dated 1/17/01 9:20:23 AM Eastern Standard Time,

egroups writes:

> Trisha doesn't like to wear shoes either. She pulls them off in the car, in

> the store at the first thing she does when she comes home from school is

> take

> the shoes off and her slacks. (she doesn't like to wear anything but

> oversized tops at home)

This is exactly what my Kristy does when she gets home from school. She takes

ALL her clothes off. She likes too wear my husbands extra large T-shirts, but

would prefer to walk around nude. Since she is ten years old now we are

trying to remind her " to put her shirt back on. "

She hates underwear and will only wear them at school. If I pick her up at

school she immediately takes her pants off and underwear then puts her pants

back on. Last week I took her for a physical and while I was talking to the

receptionist she tried to take her pants off in the waiting room. She had her

pants down to her knees and couldn't get them off because she had on work

boots. I don't even bother putting on underwear on her unless she is going to

school because she will take it off no matter where we are (restaurants,

etc.).

As for shoes she takes them off all the time, on the school bus, in the car

and at school. Two years ago her teacher told me that they have two fire

drills a month and they don't have time to put her shoes on so she might have

to go outside barefoot. This little comment upset me so I bought her the

little workboots from Stride Rite to wear in the winter. They are harder for

her to get off.

Kristy used to take her clothes off while in the shopping cart, but it seemed

to be because she was hot in the store. I just dress her in lighter clothing

if I take her shopping.

Diane

[Guest guest]

diane,

how old is kristy????????????// ashton is the same way as her and

trish.............she comes home and shoes, socks, and pants come

off...........she runs around in a tshirt and underwear///////////thank god

she will wear those.............heheh leah

>>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

>>and the Almond Oil you find in the fancy cooking oil aisle at the grocery

store, same thing?<<

Yes, so is olive oil, shortening, peanut oil, walnut oil, etc...

Everything you need to make a bar of soap is at your friendly neibourhood

grocery store

>>Norton AntiVirus... <<

Wouldn't be on the net without it

I also don't open ANY exe files (or anything you have to open) if its sent

in an email...even if its from someone I know.

Virus' can attach themselves to any email without the sending party knowing.

http://www.thesoapgoat.com

Visit our newly renovated store!

[Guest guest]

I'm new to the board, just want to introduce myself...I'm in MN and I

am going to be starting BFL on Monday. I am at my highest weight I have ever

been...don't know how it happened. I suppose managing a restaurant didn't

help. Shame, disgust, all are present here.

I did BFL once before a couple of years ago and had great success with it.

So...here's to a new all of us!

in MN

[Guest guest]

About the fruit...There are fruits that are lower on the glycemic index such

as berries. They are better to consume. Reading " The Zone " by Barry Sears has

really helped me to understand why the BFL diet works...also how to tweak it

so it is more productive. Especially the role sugar and complex carbs play in

our fat gain.

There is also a pretty cool method for figuring body fat percentages in

there. Not a substitution for BFL, just a supplement!

in MN

[Guest guest]

Hi !

Welcome back... so you had great success before and then what happened? Did you

reach your goal and then have nothing more to aim for? Did the eating slowly

increase or did it happen fast that Boom - you were back up there? I ask

because I am closing in on my goals and am thinking about " maintenance mode " .

Thanks!

Park

Re: Digest Number 618

I'm new to the board, just want to introduce myself...I'm in MN and I

am going to be starting BFL on Monday. I am at my highest weight I have ever

been...don't know how it happened. I suppose managing a restaurant didn't

help. Shame, disgust, all are present here.

I did BFL once before a couple of years ago and had great success with it.

So...here's to a new all of us!

in MN

[Guest guest]

Welcome!!! Glad to have you join us!

Colleen

> I'm new to the board, just want to introduce myself...I'm in

MN and I

> am going to be starting BFL on Monday. I am at my highest weight I

have ever

> been...don't know how it happened. I suppose managing a restaurant

didn't

> help. Shame, disgust, all are present here.

>

> I did BFL once before a couple of years ago and had great success

with it.

> So...here's to a new all of us!

>

> in MN

>

>

>

[Guest guest]

Hi Kathie,

While I cannot offer you much in the line of scoliosis docs who know what

they are doing (I live in WV & will NEVER let another doc from here do

anything major to my spine again), perhaps I can at least offer you some

emotional support, and perhaps pain management support.

It can be very degrading to have to get a prescription for narcotics/muscle

relaxants filled month after month. People without intense or chronic pain

are often very biased. And then of course, there are the side effects. Plus

simply knowing that you will always have to take some kind of pill in order

to function. And yet, there is hope to be found.

I currently have an intrathecal pump in my abdomen which delivers a

combination of meds into my spinal fluid. I truly has changed my life. I

still have to take pain meds by mouth daily most of the time, but at least

now they actually seem to help. Please make sure your docs are doing labs on

you regularly. You should be getting a CMP (complete metabolic profile)

every six months depending on which meds you're on. I have to actually ask

for this as nobody ever remembers to do it (docs I mean), even though they

love to warn you of all the possible liver damage caused by so many of these

drugs.

My parents were told when I had my Harrington rods done that I would

eventually end up in a w/c as well. I too, am still ambulatory, but need

forearm crutches for any distance at all. Plus I'm on wheels to go long

distances, for example, to shop at Walmart or go to the civic center for

concerts, etc.

Keep hanging in there. There are many more pain management options other

than med pumps, such as SCS (spinal cord stimulators), RFA (radio frequency

nerve ablation), & much more. If you don't have a pain management doc who is

an anesthesiologist, you may want to ask for one. I could wring his cocky

little neck sometimes, but mine really did improve my quality of life.

Best Wishes,

Carla Kay

[Guest guest]

To Carla Kay,

I was very impressed with your note. It could have been written by me

(nearly) except that I believe I am much older, and that I was turned down

for the interthecall pump because I didn't have enough space for it!

Otherwise, we are pretty similar. I do use a cane, but probably do need the

type of arm support canes you use. I also use a scooter for WalMart, etc.

BUT, I am very interested in what you feell has been the plus side of the

pump. Has it really been wonderful? I am on the Duragesic patch plus

Vicodin and my physical supports. I'd love to hear from you. Thanks!

Carole

[Guest guest]

Hi!

Thank you so much for your note! It sounds dumb, but it is sure

encouraging to know that there is someone else " out there " who knows what

I am going through. Believe it or not, I just had a metabolic blood test

taken just last Oct. and discovered that on top of everything else, my

thyroid had completely stopped functioning to the point that it was

atrophied to the point that it couldn't even be detected anymore! (I

don't know if this is from the long term affects of medication or not but

it sure doesn't help!) No wonder I had been feeling so exhausted! I

thought that I was just going through a depression! (I had lost my

mother in the spring of 2001 and being an only child, I was especially

close to her. She was my best friend/advocate etc.) I also ended up

having to basically take care of her for the last months of her life. I

had 24/7 care for her, but as they didn't " know " her and were not allowed

to dispense her medications, I still ended up having to spend a lot of my

days at her house. (I was also still raising my then 17 year old

daughter as well as my 5 year old grandson!) Obviously, I tend to place

my families needs before my own, and so far this has really helped my

" mental state " and I think that this is half of the battle. Now, both of

my girls are happily married (and taking care of my now 2 grandsons).

They both live about 200 miles away (in opposite directions!) I

absolutely love the fact that they are both doing so well and are now on

their own. I have even been able to go for weekend visits (until this

thyroid thing knocked the wind out of my sails). I am now not so

patiently waiting for my body to start metabolizing properly again so

that I can once again visit my kids. I too, have a wheel chair for the

times when I am going to have to do any amount of walking but I thank God

that both of my girls (and their hubbies), take this in stride and have

even argued at times over who is going to push me around! Ha! Ha! Thank

goodness I am not suffering from the " empty nest " syndrome! I really

relish my time in my now empty home! Both of my girls manage to get home

at least once or twice a month so until I can get out and go again, I am

doing O.K. I do hate the fact that I am so tired and the lack of

activity does elevate pain levels. I am lucky to manage to run a few

errands a day, but then am so exhausted that it can take up to 2 days

after to recoup! I am sorry this turned into an " epistle " , it is just so

good to get some support, suggestions and understanding! Thank you! Oh!

I live in California and feel the same way as you as far as never

allowing another Dr. to operate on my spine! I think that they have

already given me their " best shot " and I say " Thanks, but NO THANKS! "

Kathie

[Guest guest]

QUE? NO COMPREHEND ESPANOL? NO MAS> that is about it for me in understanding

Spanish. I know some swear words, but am not sure if they are proper to use

here or not. It could be some kind of Death announcement or direations to a

birthday party.LOL HepGrama

Digest Number 618

[Guest guest]

Pam----I am having a THR on Tuesday (9/28) and Medicaid is covering it ALL.

Rehab and everything. Check into it.

Its a great thing. You can even get a home health nurse--at least in MY state medicaid pays for it all--go to the DSHS website for your state and check it out ASAP! Wish me luck! :-\

XO-Glenna/Seattle

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.766 / Virus Database: 513 - Release Date: 9/17/2004

[Guest guest]

Dear Pam. Thinking of you and wishing you all the best for tomorrow. Remember, when you wake up, the pain will be gone! It is glorious.

Blessings,

Marge

He lives!

Pam----I am having a THR on Tuesday (9/28) and Medicaid is covering it ALL.

Rehab and everything. Check into it.

Its a great thing. You can even get a home health nurse--at least in MY state medicaid pays for it all--go to the DSHS website for your state and check it out ASAP! Wish me luck! :-\

XO-Glenna/Seattle

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.766 / Virus Database: 513 - Release Date: 9/17/2004

[Guest guest]

Hi Glenna,

I just wanted to wish you the best of luck in your operation and a speedy recovery . Have a nice day.

SusiePageRox <PageRox93@...> wrote:

Pam----I am having a THR on Tuesday (9/28) and Medicaid is covering it ALL.

Rehab and everything. Check into it.

Its a great thing. You can even get a home health nurse--at least in MY state medicaid pays for it all--go to the DSHS website for your state and check it out ASAP! Wish me luck! :-\

XO-Glenna/Seattle

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.766 / Virus Database: 513 - Release Date: 9/17/2004