Re: Hello

[Guest guest]

,

It's Bonnie. You know, you really have a handle on things with your

daughter, for both your girls. They are lucky they have you. I've said it

before but go with your instincts. They haven't let me down yet. The best

thing beyond the confrence is reading all these messages. There are so many

ideas and so much help out there, like talking to a " professionalI. "

I wanted to let you know that Patty showed my mother and sisters the angel

and the note from Helen. My mom cried it was so beautiful. Thank her again

for us if yuou can. Patty's surgery is now delayed. One doctor says not to

do it and another says yes. We have to make the decision.

To others, Patty has scoliosis and " sprengles. " Her shoulderblade is rotated

and is getting worse. They will take it off and put it back where it should

be. The scar will be quite large. This will also decrease the webbing of

her neck. Her range of motion is decreased and this interfers with her

function. It is a hard decision. She complains that it hurts " a little. "

The doctor says she's not in terrible pain so we shouldn't do it till she is.

I know she has a high tollerence for pain and don't know what is the best

decision. This is her right shoulder and she is totally deaf/blind on the

left side. Patty says to do it sometimes, others not. She had a PDA fixed

last year going through the viens and arteries in both legs. (Because she

was finally diagnosed with CHARGE they looked at what they thought was a

murmor and found the PDA- it ended up being bigger than they thought) She

had a hard time with the anestesia. Says she was awake for the whole thing

but just couldn't move or talk to tell them she could feel it. That's the

only thing that''s stopping her from this one.

Also, is there anyone else out there that's worried about all the x-rays,

ultrasounds... that's been done and continues to happen to our children?

Bonnie, mother to Kris 16, Patty CHARGE 14, and wife to

[Guest guest]

I am an x-ray tech and an ultrasound tech. The rule of thumb is the

benefits should outweight the risks!!!! If it is truly necessary, have the

test. Always make sure they shield the person having the x-ray. This is

done with lead aprons or pieces of lead. The tech usually just shields the

reproductive organs, but ask them to shield as much as possible(arms,legs...

eyes are sensitive to x-ray...can cause cataracts....this is with lots of

exposure!!!!) The drs and techs that work in radiation daily wear proper

protection and don't have a problem. I don't think we have to get obsessive

over this. You get more radiation from one cigarette than from a chest

x-ray. Not to mention the rays from the TV and sun!!!! As for ultrasound,

it uses high frequency soundwaves not radiation. There is no report of

damage to the tissues at the level in the machine. Once again benefits

should outweigh the risks!!!!! Green

>From: JFoley6163@...

>Reply-To: CHARGEonelist

>To: CHARGEonelist

>Subject: Re: hello

>Date: Wed, 4 Aug 1999 08:09:32 EDT

>

>From: JFoley6163@...

>

>In a message dated 99-08-03 19:55:04 EDT, you write:

>

><< Also, is there anyone else out there that's worried about all the

>x-rays,

> ultrasounds... that's been done and continues to happen to our children?

> >>

>

>

>I worry all the time!! Jillian is only 16 months old and has had more

>x-rays

>than myself, husband, parents and other children have had in their entire

>lives put together. I asked the tech at the last x-ray if it eventually

>works

>it way out of the body and he said, " no, the radiation was kind of a

>permanent thing. " So that really scarewd me. But what are we to do?????

>

> Foley

>Mom to 4 on Aug 16, CHARGE in heaven and Jillian 16 mo

>w/cHaRGE, and 12 yr old niece

>

>---------------------------

[Guest guest]

Mike,

You have got to stop obsessing over the weight and concentrate all your

energy on your blood sugar readings. Throw that d#%* scale out in the

garbage. You will lose weight in time, but the main thing is to get your

blood sugar down. Stop cutting back on food. Eat, eat, eat!!! Just eat the

right stuff. The right stuff is not low calorie or fat free food either.

Eggs and bacon for breakfast, tuna salad or chef's salad or roast beef or

turkey or salami with cut up cheese with a small salad and real dressing for

lunch, steak or hamburgers or cheese burgers or chicken or fish with salad

and some cooked vegetables for dinner. Salads could have any or all of the

following..lettuce, alfalfa spouts, tomato, marinated artichoke hearts,

avocado, cucumber, cheese, etc. Just make the total carb count for the meal

no more than 12. It CAN be done. YOU have to make the choice.

Meniowl@...

type 2, dx 7/99, d & water aerobics

In a message dated 09/06/1999 7:11:54 PM Pacific Daylight Time,

mwells@... writes:

<< I was doing well everyone but...... I was not seeing results fast enough

as for losing weight. I started cutting down even more on meals. I would cut

down on breakfast aor lunch or supper. I would cut back on one meal. Before I

realized it I was binging. Now I am once again back to square one. I hate

myself for not having the self control or patience. I think at times that I

cannot control this. This is so hard on my body. It does not know how to

react to the highs and lows of normal. I wish I could be locked away and

people just feed me the right stuff. But I know wishful thinking.

Well tomorrow is another day and I have the choice of victory or defeat.

Sorry am feeling kinda depressed right now.

Mike

>>

[Guest guest]

Hi, Mike...well, vacations are hard for staying on diet regime...so you're

back to square one, just pick yourself up and move forward. I'm sure you've

learned a few important lessons here. Most important, DON'T SKIP MEALS! If

you can just discipline yourself to go low carb, you'll find the pounds

disappearing. Don't get on the scale every day -- just do it once a week.

Stay away from those dangerous white foods such as pasta, rice, potatos. And

pizza and desserts. Test frequently so you'll know how individual foods

affect you. Write everything down that you eat and use it as a reference

along with your BGs.. Remember we're not talking about a " diet " -- we're

talking about a change in lifestyle. If you want to have a long, productive

and healthy life, you need to do this. And you can count on us for support.

Take care! Vicki

In a message dated 99-09-06 22:12:00 EDT, you write:

<< was doing well everyone but...... I was not seeing results fast enough as

for losing weight. I started cutting down even more on meals. I would cut

down on breakfast aor lunch or supper. I would cut back on one meal. Before I

realized it I was binging. Now I am once again back to square one. I hate

myself for not having the self control or patience. I think at times that I

cannot control this. This is so hard on my body. It does not know how to

react to the highs and lows of normal. I wish I could be locked away and

people just feed me the right stuff. But I know wishful thinking.

Well tomorrow is another day and I have the choice of victory or defeat.

Sorry am feeling kinda depressed right now. >>

[Guest guest]

In a message dated 99-09-06 22:41:07 EDT, you write:

<< with a small salad and real dressing for

lunch, >>

or even a large salad with cut-up cooked chicken breast or cooked

shrimp...Vicki

[Guest guest]

Toni and Mike, I totally agree with Toni. It is hard to rely on other

people with this disease but I had to come to terms with it to. I also had

to get the sugars under control and the exercise down and have not even tried

to diet thing yet because I had to face up to the getting my health right

first. That was a major major challenge for me. I can remember when Mike

first joined the list and where he was, now look at where he is, that is

awesome. I am proud of you Mike so you hang in there. I don't often like to

offer advise or my thoughts on this disease because I am a student learning

from the others who know a whole lot more. Believe me I have all of you in

my prayers and we well all make it. Tons of hugs Shelia. )

[Guest guest]

Mike...TRUST ME! It will be victory!

Sometimes I feel like I am adrift in a sea, or that I am an island...but

what was it that

Donne wrote many many years ago No Man Is An Island...? (I think that

was his name!

I'm old enough to remember the book, but too old to really rely on my

memory entirely! : (

I have never been one to rely on others and lately I must! It is very

hard to do! I had

hoped that I would always be able to care for myself, my husband and

even the grand

kids (now that I have them) but with problems that come up with this 800

pound gorilla

are sometimes a hindrance! We just have to keep on keeping on, daily,

one day at a

time...or maybe one step at a time! It has been 21 years since my dx and

I am glad I am

still coping!

My motherinlaw had lung surgery for what her doc said was sure to be

cancer. It was

not! Turned out to be a spot of TB the size of a dime! She was about 60

at the time. At

least once a year thereafter, she had a bout with pneumonia, sometimes

being

hospitalized. But the docs always said, no problem, just scar tissue

caused a germ to get

trapped! This continued 'til she was 83! Then they did further testing

and said it was,

indeed, a malignancy, albeit an extremely slow growing one! She died

within 3 months!

Just gave up!

I have vowed not to do this! I will struggle with this as long as I

have a breath to

breathe. I fully intend to see my great grandchildren (which should be

a while down the

road --my oldest grandchild is 9 and the youngest is almost a year old!)

So, you see, I am

going to keep managing, day by day! Maybe I will even see a cure in my

lifetime!

You keep your chin up! The people on this list are kind, caring

individuals...all with the

same problems! You can depend on them all! *hugs* Toni

Mike Wells wrote:

> mwells@... Hello all, been outatown for holiday. Just got

> in this evening. Hello Suane, amd . Good to hear from you

> all. I was doing well everyone but...... I was not seeing results fast

> enough as for losing weight. I started cutting down even more on

> meals. I would cut down on breakfast aor lunch or supper. I would cut

> back on one meal. Before I realized it I was binging. Now I am once

> again back to square one. I hate myself for not having the self

> control or patience. I think at times that I cannot control this. This

> is so hard on my body. It does not know how to react to the highs and

> lows of normal. I wish I could be locked away and people just feed me

> the right stuff. But I know wishful thinking.Well tomorrow is another

> day and I have the choice of victory or defeat.Sorry am feeling kinda

> depressed right now.Mike

[Guest guest]

Mike Wells wrote:

<< I was not seeing results fast enough as for losing weight. I started

cutting down even more on meals. I would cut down on breakfast aor lunch or

supper. I would cut back on one meal. Before I realized it I was binging.

Now I am once again back to square one ... >>

Mike, I can't count the number of times I have backslid. The hopeful news

here is that your bg's were coming down. It is natural for your body to feel

hypoglycemic at what are normal bg readings at first. But just stick with it

for several days and your system will happily adjust to readings that are on

a par with non-diabetics. Eating carbohydrates starts the

hyperglycemic/hypoglycemic rollercoaster ride, so every time you eat too

many carbs in one sitting, you will probably feel really rocky and

hung-over, and you will take on water like a ship flushing out its holds.

Just hop back in the saddle and give it another shot. All of us have slipped

(me more than most).

Hugs,

Susie