New to the list

[Guest guest]

Dear ,

A belated welcome to the group. You have come to the right place for

support. This is a wonderful group of people. I " m sorry you have been sick

but am glad you found us. I look forward to hearing your input in the

following weeks.

I joined this group last summer after I was diagnosed with Stills. I am 35,

have 4 kids, a terrific supportive husband, and a lot of pain! But it has

its ebbs and flows (unfortunately this is a bad day -- catch me tomorrow and

I'll be much more uplifting!!)

anyway, welcome!

[Guest guest]

We are all smart cookies here!!!!!!Pat yourselves on the back becuase you

deserve it. Just from some stuff I have learned on here my rheumy was so

happy for me. She said I'm so glad you are doing your research. But I really

didn't research anything! Anyways have an awesome day to one and all!

Patti~Canada

>From: pscarmen@...

>Reply-Stillsdisease

>Stillsdisease

>Subject: Re: New to the list

>Date: Tue, 18 Mar 2003 20:14:13 EST

>

>Hi Patti in Canada,

>That was such a nice thing to say about our group....how helpful we are

>without even knowing it. That makes me feel very good. We do try to help

>one another as much as we can and I truly believe that most of us know more

>about how to get ourselves feeling better than our doctors. Until I joined

>this group, I don't believe my Rheumatologist knew anything about Stills

>and

>now if I suggest a new treatment or drug, he is willing to try it with me.

>Gosh darn, we are some smart cookies, yes?

>I hope you are feeling better now that warmer weather seems to be coming

>out

>way. The weather plays no part in my feeling good or bad but it probably

>does for some of us.

>Take care,

>Ca. Carmen

>

>

>

>

>

>

>

[Guest guest]

The best advice I can give you is START a journal. Make a list of goals. Set a short term goal. Evaluate what you do know water, portions, exercise, health, feelings, food choices, support system, and anything else that effects you. Than take choice a plan and GO FOR IT.

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

[Guest guest]

Start by doing things now. Not when youg et skinny! lol Then research and get on a way of eating that you can stick to. Next find a exercise that is healthy and fun for you! Aerobics, swimming, walking your dog, bike riding, ballet, find what you like to do and go with it. If you don't like it, you won't be able to stick to it. So keep trying till you find something you like.

On Mon, 09 Jun 2003 12:09:24 -0000 "Rebekah" <emailrebekah@...> writes:

Hi, my name is Rebekah and I've just joined this list hoping to meetother people who are struggling with large amounts of weight... Ibelonged to weight watchers for a little while, but being surroundedby 140 lb people trying to lose 10 lbs was only making me feel worseabout myself... I think that looking at me was a motivater for some ofthem! I am 24 years old, and weigh 260 lbs... I have weighed over 200lbs since high school and I am sick of being ashamed of the way Ilook, I'm sick of eatting until I'm physically sick, and I'm certainlysick of feeling sorry for myself and "planning" all the great thingsI'll do... "once I loose this weight" So, thanks for letting me jointhis list... Now, WHERE on earth do I start?! :)Rebekah

[Guest guest]

Hi Rebekah,

Welcome to the list, you will find great support here. Everyone here knows just how you feel because we have all experienced it. You asked where do you start, well the only day you can do anything about is TODAY.

I've learned from decades of "miracle diets" that the only thing that really works is --more exercise and less calories--. I am personally using Deal a Meal/Foodmover program. I got it for $5 on ebay. My problem has always been not using any kind of control of portion size. I have had to get honest with myself and bought a very nice digital scale at Target and I weigh and measure everything now. I also joined the Y and exercise in some form everyday. I just got serious about my lifestyle over Memorial Day weekend. I was up sick during the night with reflux and sat up in bed and analyzed my aches and pains and determined that all my physical complaints were if not caused by were at least aggravated by carrying around an extra 150 pounds. Since that weekend I am down 6 pounds and feel so much better about myself. I am trying really hard not to obsess over numbers but just eat right, exercise and LIVE.

Hang in there Rebekah, let's do this thing together.

Sheila

[Guest guest]

Thanks for the warm welcome everyone!! I am really excited to take

this journey, I just have a feeling that this time will be

different... So, to re-cap what I've learned... journaling, walking,

drinking water, low carb, hi protien.... but my favorite idea was that

I could get the plan on Ebay I hadn't thought of

that! How funny, since I always shop ebay!

Looking forward to getting to know you all!

Rebekah

[Guest guest]

In a message dated 6/10/03 10:04:18 PM Eastern Daylight Time, emailrebekah@... writes:

I hadn't thought of

that! How funny, since I always shop ebay!

You can find some great stuff. If you are going the richard simmons route. Very sensible plan. If you need a little motivations I love the 6 tape of the colors of life. Great stories on tape.

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

[Guest guest]

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

From: " Rebekah " <emailrebekah@...>

> other people who are struggling with large amounts of weight... I

> belonged to weight watchers for a little while, but being surrounded

> by 140 lb people trying to lose 10 lbs was only making me feel worse

> about myself...

Welcome. I know how you feel about WW. I found a couple of locations that

had 50+ pound meetings which helped but one of these meetings was led by a

lady that had lost something like 14 pounds to get to goal. Ugh! The one

in Virginia was great though. The leader had lost a lot of weight.

Ann

[Guest guest]

Whew- Where are you from Dolby?

That was the best English Literary e-mail I think I've ever read!

Me, I've always Dove (Dived), whatever, without a License because I

like Diving and never finished the Course (my HS buddies wanted to go Diving).

What an I say, it's not Brain Surgery.

But I've also had rudimentary Training outside of the DMT Course in the US

Army's Key West AO. And this was part of my becoming a Special Forces Medical

Sergeant. I do know a bit of Dive Medicine, but I'm no means an expert. The

main thing is this: IDENTIFICATION.....if you THINK something is wrong? It

already is. I had 2 " Green Beret " Combat Diver buddies die. So let me know.

I was on a Combat Dive Team in Army Special Forces for a while, went to

Danish Scout Swimmer School (Yes, IN Denmark) ....So ask away. We all want to

research if we don't know.

Field your questions??? -CA

[Guest guest]

> Hi Rich,

As with many things there is simply no substitue for experience. Working in a

hospital is one of the best ways to learn how to deal with some of the things

you may face. However if this is impractical, and unless you want a career

change then it probably is, I have two other suggestions.

Firtsly there are first aid courses which you can take, with which you may be

able to help out at events( concerts, sports competitions etc.).There you would

be dealing with sprains, breaks, panic and generally the sort of thing you may

be faced with in a cave. My only other idea is that you join al lifeboat crew

(if you live near the sea). I joined my local crew and although I have a medical

background, I have been gaining experience in the daft things that happen to

people when in the water.

Hope this helps.

JOhn

> From: " Dolby " <extremeppo2@...>

> Date: Sat 28/Jun/2003 10:37 GMT

>

> Subject: new to the list

>

> Hi,

>

> My name is Rich Dolby and have just joined the RSM list. I am an active

> recreational scuba-diver with a particular interest in cave diving, which is

> where my interest in RSM comes in.

>

> Following a neurological 'bend' (decompression sickness) in September 2001 I

> was diagnosed with a P..F.O. by Dr Wilmshurst at Royal Shrewsbury

> Hospital. I subsequently underwent the operation to correct the defect at

> the Liverpool Cardiothoracic Centre. Following the all clear form Dr

> Wilmshurst I have resumed my diving activities.

>

> Following my initial treatment for DCS at the D.D.R.C. in Plymouth I become

> interested in Diving Medicine. I took the Diver Medic Technician course

> which I found very interesting and quite relevant to the environment in

> which I increasingly dive - that being the cave environment where oa team is

> often passing through lengthy submerged passageway, to reach dry sections of

> cave beyond & continue exploration.

>

> It is in this situation that a solid grounding in medical care becomes very

> important. A minor injury can have serious implications when the patient is

> some distance from 'conventional' medical assistance.

>

> I am interested in consolidating what I learned from the D.M.T. course, and

> perhaps progressing a little further with any relevant training which may be

> available.

>

> Any suggestions/advice from other members of the list would be most welcome.

>

> Regards,

>

>

>

> Rich Dolby.

>

> _________________________________________________________________

> Use MSN Messenger to send music and pics to your friends

> http://www.msn.co.uk/messenger

>

>

>

>

> Member Information:

>

> List owner: Ian Sharpe Owner@...

> Editor: Ross Boardman Editor@...

>

> ALL list admin messages (subscriptions & unsubscriptions) should be sent to

the list owner.

>

> Post message: egroups

>

> Please visit our website http://www.remotemedics.co.uk

>

> Regards

>

> The Remote Medics Team

>

>

[Guest guest]

Our physicians, also, did not agree...at first. We have a pre-op class

in which " anyone contemplating " the surgery could come. A defensive

bunch, anticipating that dietitian would try to talk them out of the

operation.

We adjusted the approach. Physician finally made the class mandatory.

Still, patients were not remembering the post op diet once they were

admitted.

These past two weeks we have started a new requirement: When the

patient comes in to pre-register for the surgery they must meet with the

surgical nurse (care coordinator) for 15 minutes and the dietitian for

15 minutes. They have the surgery approx. one week later. They seem

to remember the information much better.

We still provide 1 oz servings of two items per " meal. " Now we

include a small spoon (typical " sample " spoons from a local HyVee. A

bright red note is on the tray warning the patient to consume only 1

ounce, make it last 20-60 minutes, and to save the other ounce for at

least an hour later.

We also send a 1-oz. nourishment at pm and hs with clear and full

liquid diets. Patients leave on full liquid if they have GB and pureed

if they have VBG (MD preference).

I do visit each patient prior to the first meal tray. I'm available

for questions and provide them with a packet and URGE them to attend

FREE post-op classes at week 2, 4 and 6. Attendance was not good until

we included the class price into the surgery cost.

With each program change, we are seeing better understanding of the

diet. Hope this helps.

Colleen Brown, RD, LD, CNSD

St. Luke's Hospital

Cedar Rapids, IA 52402

brownck@...

369-8085

369-8021 (fax)

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If you are not the intended recipient or an agent responsible for delivering it

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[Guest guest]

Fluids: In hospital try to get 1-2 oz per hour awake (this is tough for

many patients); by two weeks aim for 64 ounces.

Protein: In hospital no goal, as they are only taking " food " for 1-2

days. By end of week 2 their goal is 45-60 grams. They are provided a

guide in their packet as to the amount of protein in foods, supplements.

Vitamins/supplements: MD does not prescribe vitamins while in

hospital, but many have already purchased these. We ask them to take

two (sugar-free) chewable vitamins. Chewable prenatal and chewable with

extra vitamin C are available. Additional calcium (carbonate) and

extra iron. A list of High vit c and iron foods provided in packet.

We give SF Carnation Instant Breakfast while on Full Liquids in order

to practice meal timing and spacing. This is a complicated task for

some patients if they haven't actually tried it while in patient.

I share with them advice from a Mayo presentation regarding blood work

to have checked regularly in the future--Hgb, B12 and calcium.

Colleen Brown, RD, LD

St. Lukes Hospital

Cedar Rapids, IA 52402

*********************************************

This message and accompanying documents are covered by the Electronic

Communications Privacy Act, 18 U.S.C. §§ 2510-2521, and contain information

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[Guest guest]

I am surprised to hear that you are telling your patients to take calcium

carbonate. I thought it was well known that gastric bypass patients need calcium

citrate and that calcium carbonate is not well absorbed after gastric bypass due

to the lack of stomach acid(due to 1-2 oz pouch) that is required to absorb

calcium carbonate.

RE: New to the List

Fluids: In hospital try to get 1-2 oz per hour awake (this is tough for

many patients); by two weeks aim for 64 ounces.

Protein: In hospital no goal, as they are only taking " food " for 1-2

days. By end of week 2 their goal is 45-60 grams. They are provided a

guide in their packet as to the amount of protein in foods, supplements.

Vitamins/supplements: MD does not prescribe vitamins while in

hospital, but many have already purchased these. We ask them to take

two (sugar-free) chewable vitamins. Chewable prenatal and chewable with

extra vitamin C are available. Additional calcium (carbonate) and

extra iron. A list of High vit c and iron foods provided in packet.

We give SF Carnation Instant Breakfast while on Full Liquids in order

to practice meal timing and spacing. This is a complicated task for

some patients if they haven't actually tried it while in patient.

I share with them advice from a Mayo presentation regarding blood work

to have checked regularly in the future--Hgb, B12 and calcium.

Colleen Brown, RD, LD

St. Lukes Hospital

Cedar Rapids, IA 52402

*********************************************

This message and accompanying documents are covered by the Electronic

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intended for the specified individual(s) only. This information is confidential.

If you are not the intended recipient or an agent responsible for delivering it

to the intended recipient, you are hereby notified that you have received this

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any action based on the contents of this information is strictly prohibited. If

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*********************************************

[Guest guest]

My apologies--I didn't include my entire calcium information. Per my

Mayo information, I tell pts to choose chewable calcium carbonate for

the first 1-3 months post op because it is (per Mayo) easier to

tolerate. Then switch to calcium citrate for better absorption. Sorry

I abbreviated the info. Colleen

>>> kahill@... 10/09/03 12:11PM >>>

I am surprised to hear that you are telling your patients to take

calcium carbonate. I thought it was well known that gastric bypass

patients need calcium citrate and that calcium carbonate is not well

absorbed after gastric bypass due to the lack of stomach acid(due to 1-2

oz pouch) that is required to absorb calcium carbonate.

RE: New to the List

Fluids: In hospital try to get 1-2 oz per hour awake (this is tough

for

many patients); by two weeks aim for 64 ounces.

Protein: In hospital no goal, as they are only taking " food " for 1-2

days. By end of week 2 their goal is 45-60 grams. They are provided

a

guide in their packet as to the amount of protein in foods,

supplements.

Vitamins/supplements: MD does not prescribe vitamins while in

hospital, but many have already purchased these. We ask them to take

two (sugar-free) chewable vitamins. Chewable prenatal and chewable

with

extra vitamin C are available. Additional calcium (carbonate) and

extra iron. A list of High vit c and iron foods provided in packet.

We give SF Carnation Instant Breakfast while on Full Liquids in order

to practice meal timing and spacing. This is a complicated task for

some patients if they haven't actually tried it while in patient.

I share with them advice from a Mayo presentation regarding blood work

to have checked regularly in the future--Hgb, B12 and calcium.

Colleen Brown, RD, LD

St. Lukes Hospital

Cedar Rapids, IA 52402

*********************************************

This message and accompanying documents are covered by the Electronic

Communications Privacy Act, 18 U.S.C. §§ 2510-2521, and contain

information intended for the specified individual(s) only. This

information is confidential. If you are not the intended recipient or an

agent responsible for delivering it to the intended recipient, you are

hereby notified that you have received this document in error and that

any review, dissemination, copying, or the taking of any action based on

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[Guest guest]

Amy, We require thatl patients attend a preop nutrition education class. No class, no surgery!

Abbe M. Breiter, MS, RD, LD/N Dietitian U.S. Bariatric Phone 954-351-7770 x150 Fax 954-958-9266 nutrition@... ________________________________ The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the Bariblend Site!

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-----Original Message-----From: Amy Googin [mailto:agoogin@...]Sent: Monday, October 06, 2003 3:19 PM Subject: New to the ListI'm very excited to hear about this listserv!We have a surgeon that started doing the surgeries in December of 2002. We are trying to put together a "program" for the organization, but are struggling with some aspects of that. The biggest struggle right now is the nutrition component. With the organizations program, we would like to make it mandatory for the patient to see the RD pre-operatively. Unfortunately, the physician doesn't necessarily agree.The other obstacle to coming up with a consistent message for post-op diet. We are concerned that the diet advances too quickly....Any thoughts or help would be appreciated:) Amy K. Googin, R.D.Director of Clinical NutritionFaxton-St. Luke's HealthcareP.O. Box 479Utica, NY 13503agoogin@...Phone: (315) 624-6443 Fax: (315) 624-4746

[Guest guest]

You will

get several ranges, depending on how all pain affects the particular

individual. I have a very high

pain tolerance, and I don’t remember experiencing pain during or after the implant. Mostly, I wanted the incision to heal

quickly. I’ve had two ICD’s

implanted so far. The stitches for

the incision are generally on the inside, and are made with self dissolving

sutures. I had the most recent ICD

installed in June of this year.

There is only a slightly pink line where the incision was. It will fade to skin color, or white.

If you

experience pain during the procedure, tell the surgeon. He/she will inject more local anesthetic

into the area. I was conscious

during the procedure, and I suppose you will be as well. I was given Versed, which is supposed

to result in amnesia of the procedure.

But, I remember the whole thing.

Norm

-----Original

Message-----

From: Angie Parelius

[mailto:parelius1@...]

Sent: Tuesday, October 14, 2003

5:37 AM

Subject: Re: New to the

list

I am scheduled to have an implant on Friday, October

24th. How

much pain should I be expecting?

Thanks!

=====

Angie & Phil

__________________________________

[Guest guest]

Angie wrote:

> I am scheduled to have an implant

> on Friday, October 24th. How

> much pain should I be expecting?

Angie:

I don't understand. Are you getting an AICD or getting married on that day?

Are you asking about your zapper or Phil's zipper? Is the shower before or

after? Is this a matter of joules or jewels?

From California where those who get married should also get

defibrillators--just so they don't tell any fibs to each other. (If they

get them first, there would probably not be a wedding.)

Bill

[Guest guest]

Glad to have you aboard, Lynn! It's great to know that some of the

effects might fade off a bit after a decade or so.

With the accupuncture treatment, was that a constant process during the

year, or a single treatment? My guess is that puncturing the skin

creates a natural prostaglandin surge, which downregulates cyc-LT

concentration.

This would also suggest that exercise—if strenuous enough to cause

soreness—might alleviate some symptoms. Of course, that's sort of

robbing to pay .

[Guest guest]

Welcome, Lynn. I'm glad you have found some things helpful. And

thank you so much for sharing your story.

Lori

[Guest guest]

Dear Lori,

Thank you, too! I was very interested to hear about your experience with acupuncture. I had never heard of this kind of adverse reaction, but now that you mention it, I recall the concept that some modalities require a " healing crisis " '; in other words, you need to get worse before you get better. It just goes to show how unique and individual our bodies are, and that we need to constantly look for what works for us.

Best to all!

Lynn

on 12/13/2003 1:52 PM, truelori at truelori@... wrote:

Welcome, Lynn. I'm glad you have found some things helpful. And

thank you so much for sharing your story.

Lori

[Guest guest]

amiodarone is on the ACC/AHA protocol for heart failure and is an

excellent drug. One caution is that amiodarone can cause pulmonary

fibrosis when used on a long term basis. For someone as young as you

are, you might want to ask more questions before submitting to

amiodarone therapy. On a short term basis, it may help avert the

implantation of an ICD, although I don't know why you would want that

if your situation calls for an ICD. Some health plans balk at the cost

but ICDs are lifesavers.

Mike

On Friday, May 14, 2004, at 09:50 AM, blissfamily wrote:

> I just joined this list not that long ago, I don't as yet have an ICD

> implanted, although that is one of the options being offered to me.

> I am wondering what kind of information any of you can give me on

> amiodarone, as that is another option my doctor has for me, although

> he states that it is a short term solution.

> BTW, I am Aubyn, 40 years old, with a congential heart defect,

> bicuspid value and an enlarged heart, on ramipril and metoprolol,

> mother of two children, and I am Canadian.

> Thanks for being here.

> Aubyn

>

<image.tiff>

>

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

<image.tiff>

>

>

<image.tiff>

>

>

[Guest guest]

Thanks, Mike

I live in CANADA, and thankfully our medical plan covers this, all the medication at 90% and the cost of the procedure too.

I am not sure why the switch from the thought of an ICD to an ablation instead, which is what the specialist told me on the phone the other evening. But I guess I will find out the answer to that one when I see him again on JUNE 4th. HOPEFULLY, I can stay calm between now and then.

Aubyn

Re: New to the list

amiodarone is on the ACC/AHA protocol for heart failure and is an excellent drug. One caution is that amiodarone can cause pulmonary fibrosis when used on a long term basis. For someone as young as you are, you might want to ask more questions before submitting to amiodarone therapy. On a short term basis, it may help avert the implantation of an ICD, although I don't know why you would want that if your situation calls for an ICD. Some health plans balk at the cost but ICDs are lifesavers.MikeOn Friday, May 14, 2004, at 09:50 AM, blissfamily wrote:

I just joined this list not that long ago, I don't as yet have an ICD implanted, although that is one of the options being offered to me.I am wondering what kind of information any of you can give me on amiodarone, as that is another option my doctor has for me, although he states that it is a short term solution.BTW, I am Aubyn, 40 years old, with a congential heart defect, bicuspid value and an enlarged heart, on ramipril and metoprolol, mother of two children, and I am Canadian.Thanks for being here.Aubyn<image.tiff>

Please visit the Zapper homepage athttp://www.ZapLife.org<image.tiff>

<image.tiff>

[Guest guest]

Hi and welcome! You could definetly help many families

by becoming a rescue angel. Please go to

www.generationrescue.org

Best wishes!

--- jplondgren <jplondgren@...> wrote:

> Hi everyone,

>

> I am somewhat new to this list and just wanted to

> introduce myself.

> I was diagnosed with mercury poisoning two years ago

> and in the

> process of learning about chelation and other

> treatments my doctor

> was using, I became aware of the mercury-autism

> connection. I have

> an almost 5 year old son who is not autistic, but

> does have fairly

> high levels of mercury in his body. After 1 1/2

> years of working

> with our DAN doctor, we have finally seen the

> mercury, as well as

> lead, coming out. I guess we just had to get through

> the antimony,

> arsenic and tin first. Although my son is " NT " he

> has spotty eye

> contact (getting better lately), is agressive, has

> frequent

> tantrums, and has been diagnosed with mild to

> moderate sensory

> integration disorder. Medically speaking, he has

> food sensitivies

> and a few allergies, problems with yeast and

> bacteria, and was

> deficient in a number of minerals when tested two

> years ago. Sound

> familiar?

>

> I started out reading books and getting on these

> lists just to get

> information, but as I have recovered my own health,

> have become more

> interested in how I can help.

>

> I began volunteering for CAN in January, but after

> reading Evidence

> of Harm and listening to a speaker from CAN, I have

> begun to wonder

> if my energies are best spent supporting them. Any

> feedback on that

> front would be most welcome.

>

> I will plan to buy some books on June 8th and give

> them out to our

> pediatrician and others. This will be right before

> my son turns 5

> and I refuse his booster vaccines.

>

>

>

>

>

__________________________________

Stay connected, organized, and protected. Take the tour:

http://tour.mail./mailtour.html

[Guest guest]

Welcome to our little group Yes, everything you spoke of is very familiar!! I am glad you are on the road to recovery. You did not say but is your son verbal??

Thank you for the future buying of books on June 8th!!

Kathy Hybl

[Guest guest]

Thanks Kathy. Yes, my son is verbal.

> Welcome to our little group Yes, everything you spoke of is very

> familiar!! I am glad you are on the road to recovery. You did not

say but is your

> son verbal??

>

> Thank you for the future buying of books on June 8th!!

>

> Kathy Hybl