New to the list

March 19, 2003

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!

March 19, 2003

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

>

June 9, 2003

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

June 9, 2003

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

June 9, 2003

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

June 10, 2003

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

June 11, 2003

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

June 11, 2003

----- 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

June 28, 2003

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

June 29, 2003

> 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.

>

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> The Remote Medics Team

>

October 7, 2003

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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October 8, 2003

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