Health Issues

[Guest guest]

Dear Caroline,

Thank you my friend for letting us know how you are doing. It's

perfectly alright to lurk, but we sure appreciate it when someone

sends out an e-mail to keep us updated about how they are doing.

There are a few of us here who think it is our mission in life to make

sure everyone else is okay. That's not a " bad " trait, but it surely is

a stressful one. It can't be helped..it's just there.

I will be sending you a personal e-mail.

Love you, tricia

-- Health Issues

Hi guys,

I have missed me lately, so I thought perhaps you have too. =) I seem to be

okay emotionally despite the health ride I have experienced for 18 months.

Yesterday it was 1 year since my life was " normal " whatever that means. May

11,2001 was the first time I was incompassitated due to Stills Disease and

spent 2 months flat on my back from fevers and exhaustion.

I saw my Rheumatologist on Thursday. He is getting frustrated by my bodies

refusal to let go of the fevers. He is very confident that we will get them

under control and find the right medication combination though. I have had

fevers in the 101 degree range daily for 18 months now, but now, when I hit

100 degrees it feels more like 103 and takes more out of me. I spend quite a

bit of time sleeping, and resting.

I have not heard from SSDI although my 180 days since filing Nov 01, 2001

were up May 01, 2002. My case it particulally complicated because I have so

many illnesses / diseases at the same time. I have been told by my doctors

that it is harder to get private insurance disability that SSDI and I have

qualified for that... so I guess time will tell.

I have until June 4 to get better, or the doctor says we will be making some

radical changes. I am not sure what that means. He has upped my sleep meds

again to help with pain and ensure I am getting proper rest. He also changed

my NSAIDS from Relefin 1500 mg / day to Salsilate 3000 mg / day. Still

taking the Prednisone at 9 mg per day - 5 mg AM and 4 mg PM. MTX is still

twice a week, 12.5 mg injections.

My days are running together, and I don't remember to read my e-mail but I

am taking advantage to the " no energy time " by writing a book. It is a

fanciful childrens story. I am on chapter 8 and am having a great time

indulging my creative talents and the child within. If you don't hear much

from me, I am still here, but more of a " lurker " at the moment. My goal is

to sleep as needed, write to my hearts content, take my drugs on time, and

hope for the best.

Hope everyone is doing as well as can be expected. My thoughts are with you

Marty and hope you win tomorrow. Everyone be strong of heart and know how

valuable you are to this group. I enjoy the smiles you bring to my life.

Wishing you peace, joy and love for all time. Smiles today and always,

Caroline

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

[Guest guest]

Caroline,

I am just catching up on e-mail one by one, but I just wanted to say that it

was so nice to hear from you again and to up-date everyone about your health

We have missed you too, very much and you are never forgotten and I am

hoping that better days are coming. You rest and take all the time you need

we are always here. Hugs coming your way.

Love, Sue #2

-- Health Issues

Hi guys,

I have missed me lately, so I thought perhaps you have too. =) I seem to be

okay emotionally despite the health ride I have experienced for 18 months.

Yesterday it was 1 year since my life was " normal " whatever that means. May

11,2001 was the first time I was incompassitated due to Stills Disease and

spent 2 months flat on my back from fevers and exhaustion.

I saw my Rheumatologist on Thursday. He is getting frustrated by my bodies

refusal to let go of the fevers. He is very confident that we will get them

under control and find the right medication combination though. I have had

fevers in the 101 degree range daily for 18 months now, but now, when I hit

100 degrees it feels more like 103 and takes more out of me. I spend quite a

bit of time sleeping, and resting.

I have not heard from SSDI although my 180 days since filing Nov 01, 2001

were up May 01, 2002. My case it particulally complicated because I have so

many illnesses / diseases at the same time. I have been told by my doctors

that it is harder to get private insurance disability that SSDI and I have

qualified for that... so I guess time will tell.

I have until June 4 to get better, or the doctor says we will be making some

radical changes. I am not sure what that means. He has upped my sleep meds

again to help with pain and ensure I am getting proper rest. He also changed

my NSAIDS from Relefin 1500 mg / day to Salsilate 3000 mg / day. Still

taking the Prednisone at 9 mg per day - 5 mg AM and 4 mg PM. MTX is still

twice a week, 12.5 mg injections.

My days are running together, and I don't remember to read my e-mail but I

am taking advantage to the " no energy time " by writing a book. It is a

fanciful childrens story. I am on chapter 8 and am having a great time

indulging my creative talents and the child within. If you don't hear much

from me, I am still here, but more of a " lurker " at the moment. My goal is

to sleep as needed, write to my hearts content, take my drugs on time, and

hope for the best.

Hope everyone is doing as well as can be expected. My thoughts are with you

Marty and hope you win tomorrow. Everyone be strong of heart and know how

valuable you are to this group. I enjoy the smiles you bring to my life.

Wishing you peace, joy and love for all time. Smiles today and always,

Caroline

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

[Guest guest]

In a message dated 7/31/2002 8:09:02 PM Central Daylight Time,

writes:

<<

Maybe the question to ask is " How many kids on this last have had generally

good health, especially so in light of the medical issues that can come

with the DS? "

Beth Mum to Ben, age 12 1/2

>>

would fall into the many issues category -complete AVSD repaired but

then requiring an artificial mitral valve, hypthyroid, vision impaired,

hearing impaired, nissen procedure at age 3, failure to thrive until 7+ years

old, Gastro-intestinal issues that have never been resolved (retesting for

celiac), sensory integration issues, and all the behavioral issues.

Karyn

[Guest guest]

<< Maybe the question to ask is " How many kids on this last have had generally

good health, especially so in light of the medical issues that can come

with the DS? "

Beth Mum to Ben, age 12 1/2

>>

Oh, I LOVE polls!!!! LOL Seth has had surgery for an ASD repair, but other

than a few ear infections, has been quite healthy.

Gail :-)

[Guest guest]

Hi all, ...I'm sorry if I spell words wrong.

Benji had strabismus (crossed eyes..surgery at 10

months) and now has accomodative esetropia (sees only

in 2 dimensions)..he uses one eye at a time, not

together. He also is farsighted and has astigmatism.

He was born with a slight heart murmur..no other

defects. We all have allergies, and was not

spared. Because he licks his hands, he has brought

home viruses from school...but mostly he tends toward

the 'green monster' from allergies.

Ann

__________________________________________________

[Guest guest]

Hi all,

5yrs has DS and Type 1 Diabetes (diagnosed age 3 yrs),no heart defects.

Normal hearing(with grommets)

Near normal weight and Height(age 4/5 yrs clothes)

Stigmatism but won't wear his glasses most of the time.

Very healthy otherwise.Loose stools in the past,now normal.

Joanne

Re: health issues

In a message dated 7/31/2002 8:09:02 PM Central Daylight Time,

writes:

<<

Maybe the question to ask is " How many kids on this last have had generally

good health, especially so in light of the medical issues that can come

with the DS? "

Beth Mum to Ben, age 12 1/2

>>

would fall into the many issues category -complete AVSD repaired but

then requiring an artificial mitral valve, hypthyroid, vision impaired,

hearing impaired, nissen procedure at age 3, failure to thrive until 7+ years

old, Gastro-intestinal issues that have never been resolved (retesting for

celiac), sensory integration issues, and all the behavioral issues.

Karyn

[Guest guest]

I feel like I should " join in " here Timmy has has about 5 sets of tubes

in his ears, had ASD and VSD at birth but the spontaneously repaired

themselves by age 2. He seems to be in general good health but now that I

am on this list am wondering about celiac....his vision is in question but

the last time I was at the ped eye dr,and told him about the ASD he asked

me what my hopes were for " this child " because he has a pretty profound

diagnosis and his vision is the least of my worries!!!!!!

At 10:25 PM 7/31/02 -0400, you wrote:

><< Maybe the question to ask is " How many kids on this last have had generally

> good health, especially so in light of the medical issues that can come

> with the DS? "

>

> Beth Mum to Ben, age 12 1/2

> >>

>

>Oh, I LOVE polls!!!! LOL Seth has had surgery for an ASD repair, but other

>than a few ear infections, has been quite healthy.

>Gail :-)

>

>

[Guest guest]

In a message dated 8/1/2002 2:46:37 PM Central Daylight Time,

writes:

<< I was at the ped eye dr,and told him about the ASD he asked

me what my hopes were for " this child " because he has a pretty profound

diagnosis and his vision is the least of my worries!!!!!! >>

The dr. said this or you feel this. I will admit that I gave up the fight

over glasses with and hearing aides aren't happening. So, as a parent I

feel we have the right to make these decisions but if a dr. told me not to

worry about something I'l find a new dr.

Karyn

[Guest guest]

In a message dated 7/31/2002 10:26:06 PM Eastern Daylight Time,

smilinggail@... writes:

> Maybe the question to ask is " How many kids on this last have had generally

> good health, especially so in light of the medical issues that can come

> with the DS? "

>

Hi Beth,

Zeb has had asd with a valve repair. He always had a very poor immune system

until this past year also poor vision, hearing and sleep apnea so far. I am

convinced that that extra chromosone plays havoc with their entire body.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

The doctor SAID this to me...yes, I do feel that he needs another ophth

eval now because I don't feel that he was evaluating him fairly if he

thought " what's the use anyway " . He has been seeing both of my boys now

for the last 4 years. My other son has some serious vision problems. I

did trust this doctor with both of my sons and now I guess I am in search

of another.....

At 07:31 PM 8/1/02 -0400, you wrote:

>In a message dated 8/1/2002 2:46:37 PM Central Daylight Time,

> writes:

>

><< I was at the ped eye dr,and told him about the ASD he asked

>me what my hopes were for " this child " because he has a pretty profound

>diagnosis and his vision is the least of my worries!!!!!! >>

>The dr. said this or you feel this. I will admit that I gave up the fight

>over glasses with and hearing aides aren't happening. So, as a parent I

>feel we have the right to make these decisions but if a dr. told me not to

>worry about something I'l find a new dr.

>

>Karyn

>

>

[Guest guest]

I guess i forgot to post some of nathan's health

problems, because of the immune defiencies, he has

been sick with one virus or infection or another 75%

of the time, he usually goes about 2-3weeks where is

is well then sick for months. Soo many ear infections

i lost track, on 7th set of tubes, chix pox twice

horribly, resistant pseudomonis virus, strep several

times including rash dehydration etc requiring TPN,

constant recurring sinusitus/rhinitis, had a few eye

surgeries too had a " V " pattern to fix, then had to

patch for several years, also had his droopy bottom

eyelids fixed, his vision is still a little far

sighted but just slightly doing much better now, mild

to mod hearing loss, constipation, sleep apnea,etc i

could go on, but it would be a book,as its allready

turning out ot be, i am very thankful God gave him a

good heart, with a just a murmur to outgrow, and as i

posted earlier he is getting somewhat better with age

and newer vaccines. shawna.

--- Gerber <kenanngerb@...> wrote:

> Hi all, ...I'm sorry if I spell words wrong.

> Benji had strabismus (crossed eyes..surgery at 10

> months) and now has accomodative esetropia (sees

> only

> in 2 dimensions)..he uses one eye at a time, not

> together. He also is farsighted and has

> astigmatism.

> He was born with a slight heart murmur..no other

> defects. We all have allergies, and was

> not

> spared. Because he licks his hands, he has brought

> home viruses from school...but mostly he tends

> toward

> the 'green monster' from allergies.

> Ann

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Angie..how r u? I hope your health issues arent too bad. thanks for the

hello...

Kimi

[Guest guest]

As someone who has had serious health issues for a long time, not the least is the matter of my mental health being questionable as to my ability to be allowed to actually walk the streets, I offer some observations for your consideration.

Let us compare the three most serious threats to a man's health, each of which I have had a long and repetitive experience with. They are heart attacks, strokes and housework.

Heart attacks usually are preceded by a pain in the chest.

Strokes are usually preceded by a headache.

Housework is a pain in a lower part of the body.

Heart attacks limit one's ability to lift things up.

Strokes limit one's ability to stand up steadily.

Housework limits one's ability to hold his head up in public.

Heart attack victims need to wear loose, comfortable clothing

so as not to cut off circulation.

Stroke victims need to wear old, sturdy clothing to protect

themselves when they fall down.

Houswork victims need to be naked at all times so that if

someone walks in on them they will immediately run out of

the room before noticing that he is vacuuming.

Heart attacks are caused by the victim's heart not working.

Strokes are caused by the vicim's brain not working.

Housework is caused by the victim's wife's mouth working.

Heart attacks result in severe shortness of breath.

Strokes result in severe dizziness.

Houswork results in severe embarrassment.

Laughing during and after a heart attack will release endorfins

to help you heal and feel better.

Laughing during and after a stroke wil release endorfins to

help you heal and feel better.

Putting festive balloons on the vacuum cleaner won't make

you feel any better.

If you are having sex after a heart attack, make sure that your

partner is aware that you may tire easily and need a moment to

rest periodically.

If you are having sex after a stroke, make sure your partner is

aware that you may have some balance issues and need to

hold on to something stationary.

If you are having sex after housework, do not bring up the

subject of "emptying the bag."

Heart attacks require special diets low in cholesterol.

Strokes require diets with lots of fluids.

Heousework requires diets with lots of alcohol.

A good exercise for heart attack victims is to take long walks.

A good exercise for stroke victims is to take short walks.

A good exercise for housework victims is to sit on the couch,

and watch football on television while the wife takes a walk.

Heart attacks can occur at any time, but usually they happen in

the early morning hours or when doing something strenuous.

Strokes can occur at any time but usually they happen during

daytime hours and when doing normal activities.

Housework occurs only when the wife is home.

Treating heart attacks successfully requires a good cardiologist.

Treating strokes successfully requires a good neurologist.

Treating housework successfully requires a good bartender.

Heart attack victims take a baby aspirin every day to keep from

having another.

Stroke victims take a baby aspirin every day to keep from

having another.

Houswork victims need stronger drugs.

Heart attack victims need a doctor's clearance before they can drive.

Stroke victims need a doctor's clearance before they can drive.

Housework victims can't drive until they finish vacuuming, dusting

and scrubbing the toilet.

Heart attacks often include the term cardiac arrest.

Strokes often include the term brain dead.

Housework often includes both the terms, cardiac arrest, and

brain dead--cardiac arrest when the wife sees a cobweb in an

obscure corner of a room no one ever goes in, and brain dead

to describe a husband that does housework without being yelled

at by his wife.

From California where heart attacks and strokes are better than housework because hospital gowns are less shameful than an apron.

Bill