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At 10:06 AM 3/10/00 -0000, Lori wrote:

>From: " Lori " <hsmyangel@...>

>

>I got put on digest too. None of my other accounts were changed, just

this one. don't know.

>

I was searching the onelist options for a way to attach a large file and

distribute it through a onelist account. I don't *think* I did this while

doing that, but I was on digest myself until 3 or 4 am this morning (I was

working late yesterday) and noticed it.

The old server we were on is booting ALL lists and discontinuing that

service because of the poor performance and high cost of the program they

purchased. I had already moved this list and another smaller list, but have

a 500 member list for " Disability Solutions " that I use to send out the pdf

file each time it's published. I was hoping onelist would be an option, but

it is not. They won't let me attach the file. Many of these people don't

have web access and are international. Hmmm. Anyone have any suggestions?

So if I did this, I'm sorry! I went to the member page and tried, " set

original values " this morning when I changed my setting, but can't tell if

that worked or not.

Ain't the Internet fun.

Joan

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I just went to my file on onelist-it's fine but I did get the digest this

morning--go figure.

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

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  • 4 months later...
Guest guest

Thanks Kay. When I get any new info, you guys will be

the first to know. I know Sandy appreciates

everyone's prayers and support at this time.

Judi

--- " Tiernan, Kay " <kay.tiernan@...> wrote:

> Judi, Thanks so much for keeping in contact with

> Sandy and keeping us

> updated. I'm sure the family is devastated and I

> just can't imagine all they

> are feeling. I will pray for their family as well.

> Please let her know that

> she has many friends and supporters on the Internet!

> Wish we could all go to

> her home and help out and give her a hug!

>

> Kay Mom to , , -ds , 16 mos.

>

__________________________________________________

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  • 4 years later...
Guest guest

Hi sounds like your doing ok..Most doctors don't know how to respond to their patients.. honest!!! Ask your nurse, ok.. She will answer questions, and I mean even the ones you think are dumb ok.. My kids never got this cr$ppy disease thank the gods.. Husband either.. Try just thumbing though it, the book that is..Check out the index in the back and alight upon on any subject that seams pertinent at that moment..Easier than starting from the front..I still go though mine all the time..Girl I would have loved to hear the response you got from your doctor a few years ago..Just relax it will work out... Oh and the dull pain in your side is probably you ovulating hon..Kathy B.-- news

Sorry to hear about Spyke's tail... poor little thing. I'm always afraid my cat will catch himself on fire w/ my electric heater in the bedroom. He practically lays on it at times.Hi to everyone. Help! I finally got the facts from the specialist I saw 2 wks ago. He confirmed I do have hepc, genotype 1 w/ a viral load of 2,000,000 iu. I'm reading my books on hepc but now that I have this info I'm not sure what it all means?? His secretary will call me to schedule the biopsy. Also doing an ultrasound since I've had dull pain in my right side for awhile. Said he didn't think it was liver related since all the labs show normal functions & physical exam felt normal.So, what do I make of this so far? Doesn't sound like he recommends treatment until it is "necessary" to stop damage. I'm so worried about my family... what if I've somehow given this to my twins or husband? I think that would be more than I can handle right now. I don't think he's used my razors but has pbl used my toothbrush before. Not knowing how I got this or for how long makes me concerned about my children. Is a C-section birth less risky than vaginal if I did have this 10yrs ago or is there no difference?

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,

I had it when both of my kids were born (regular deliveries, although my son ripped me wide open so a lot of extra blood on that one) but neither of them got it. Get them all tested for your own piece of mind but chances are slim. I'm type 1, did treatment last year & undetectable so far.

De

Faith is the ability to not panic.

-----Original Message-----From: [mailto:ljjbeck05@...] Sent: Thursday, April 14, 2005 4:48 PMHepatitis CSupportGroupForDummies Subject: Re: newsThanks Gail! That makes me feel better to hear that everyone in your family is okay. My twins (boys) are 9 and I have an almost 10 step-son. I don't plan to explain this to my twins anytime soon although I hate feeling like I'm keeping something from them. I don't want them to worry & have to understand all this. I def wouldn't want the step-son reporting it back to his other family. It's very encouraging to hear you've had this for some time & are doing very well. What type do you have?

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all my kids had them self's tested when they found out..No problems, oh course they were in shock when they found out how I got the hep..But oh well!! Kathy Boo

-- Re: Re: news

Me too ...slim chance,but like De said have them tested for peace of mind...Patty

RE: Re: news

,

I had it when both of my kids were born (regular deliveries, although my son ripped me wide open so a lot of extra blood on that one) but neither of them got it. Get them all tested for your own piece of mind but chances are slim. I'm type 1, did treatment last year & undetectable so far.

De

Faith is the ability to not panic.

-----Original Message-----From: [mailto:ljjbeck05@...] Sent: Thursday, April 14, 2005 4:48 PMHepatitis CSupportGroupForDummies Subject: Re: newsThanks Gail! That makes me feel better to hear that everyone in your family is okay. My twins (boys) are 9 and I have an almost 10 step-son. I don't plan to explain this to my twins anytime soon although I hate feeling like I'm keeping something from them. I don't want them to worry & have to understand all this. I def wouldn't want the step-son reporting it back to his other family. It's very encouraging to hear you've had this for some time & are doing very well. What type do you have?

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Glad all yours are okay. I'm going to have my biopsy then get them

checked at a physical.

Have a nice weekend.

> all my kids had them self's tested when they found out..No

problems, oh

> course they were in shock when they found out how I got the

hep..But oh

> well!! Kathy Boo

>

> -- Re: Re: news

>

> Me too ...slim chance,but like De said have them tested for

peace of

> mind...Patty

> Re: news

>

>

>

> Thanks Gail! That makes me feel better to hear that everyone in

your

> family is okay. My twins (boys) are 9 and I have an almost 10 step-

> son. I don't plan to explain this to my twins anytime soon although

I

> hate feeling like I'm keeping something from them. I don't want

them

> to worry & have to understand all this. I def wouldn't want the

step-

> son reporting it back to his other family.

>

> It's very encouraging to hear you've had this for some time & are

> doing very well. What type do you have?

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" ripped " ouch!!... Thank goodness for C-sections, lol!

Have a great weekend. I'll be hanging out at the softball fields for

ball practices. Maybe I can get some sun on this pale skin.

:-)

> ,

> I had it when both of my kids were born (regular deliveries,

although my son

> ripped me wide open so a lot of extra blood on that one) but

neither of them

> got it. Get them all tested for your own piece of mind but chances

are

> slim. I'm type 1, did treatment last year & undetectable so far.

>

> De

> Faith is the ability to not panic.

>

> Re: news

>

>

>

> Thanks Gail! That makes me feel better to hear that everyone in

your

> family is okay. My twins (boys) are 9 and I have an almost 10 step-

> son. I don't plan to explain this to my twins anytime soon although

I

> hate feeling like I'm keeping something from them. I don't want

them

> to worry & have to understand all this. I def wouldn't want the

step-

> son reporting it back to his other family.

>

> It's very encouraging to hear you've had this for some time & are

> doing very well. What type do you have?

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all you have to do is tell their primary doctor that you have it.. They don't have to know any thing ok.. It will be another one of those tests, just like all the rest they do as routine.. And why wait till after your biopsy?? Would that matter?? Kathy

-- Re: Re: news> > Me too ...slim chance,but like De said have them tested for peace of> mind...Patty> Re: news> > > > Thanks Gail! That makes me feel better to hear that everyone in your > family is okay. My twins (boys) are 9 and I have an almost 10 step-> son. I don't plan to explain this to my twins anytime soon although I > hate feeling like I'm keeping something from them. I don't want them > to worry & have to understand all this. I def wouldn't want the step-> son reporting it back to his other family. > > It's very encouraging to hear you've had this for some time & are > doing very well. What type do you have?

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Guess I like the idea of waiting a bit because I only can do so much

shock at one time... in case it would be more bad news.

> > all my kids had them self's tested when they found out..No

> problems, oh

> > course they were in shock when they found out how I got the

> hep..But oh

> > well!! Kathy Boo

> >

> > -- Re: Re: news

> >

> > Me too ...slim chance,but like De said have them tested for

> peace of

> > mind...Patty

> > Re: news

> >

> >

> >

> > Thanks Gail! That makes me feel better to hear that everyone in

> your

> > family is okay. My twins (boys) are 9 and I have an almost 10

step-

> > son. I don't plan to explain this to my twins anytime soon

although

> I

> > hate feeling like I'm keeping something from them. I don't want

> them

> > to worry & have to understand all this. I def wouldn't want the

> step-

> > son reporting it back to his other family.

> >

> > It's very encouraging to hear you've had this for some time & are

> > doing very well. What type do you have?

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  • 2 weeks later...
Guest guest

Amy - the exposure in daycares is a problem for PID children because their

immune system is either deficienct or dysfunctional. We've been told the

lymphoma possibility is anywhere from 10 to 25% higher. Depends on which of

our immunologists we've asked over the years. I'd stick with what your

immunologist recommends.

The problem with what you hear on the news is that it applies to everyday,

average folks. PID patients can't boost what was never there.

P.S. Yes that's a 10 everyone sees in my signature. My little Pumpkin had

a birthday yesterday.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

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  • 5 months later...

Congratulations! :)

Marcy

>

> From: " Rudolph " <turbokev@...>

> Date: 2005/10/11 Tue PM 09:20:25 CDT

> < >

> Subject: news

>

> Hello everyone --- I haven't posted in a long time and I have a lot of news

> about me but I will just tell you some of it. On October 4, 2003, I became

> engaged to Sheila and we had a wedding ceremony on June 4, 2005, which was

> our 4th anniversary of dating.

>

> M. Rudolph

> Louisville, Kentucky 40214

> E-Mail: turbokev@...

> Web site: http://www.turbokev.com

> Instant Messengers:

> AOL: kyprincecharming ICQ: 28414413

> MSN: turbokmr@... : turbokev

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.344 / Virus Database: 267.11.14/128 - Release Date: 10/10/2005

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

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Congratulations! Now we know why you haven't been posting!! ;)

Rudolph <turbokev@...> wrote:

Hello everyone --- I haven't posted in a long time and I have a lot of news

about me but I will just tell you some of it. On October 4, 2003, I became

engaged to Sheila and we had a wedding ceremony on June 4, 2005, which was

our 4th anniversary of dating.

M. Rudolph

Louisville, Kentucky 40214

E-Mail: turbokev@...

Web site: http://www.turbokev.com

Instant Messengers:

AOL: kyprincecharming ICQ: 28414413

MSN: turbokmr@... : turbokev

--

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.344 / Virus Database: 267.11.14/128 - Release Date: 10/10/2005

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

List manager: (Sexy Mature Artist) Email: Esma1999@...

oogroups.com

List manager: (Sexy Mature Artist) Email: Esma1999@...

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  • 9 months later...

Good news on the levels. What were her platelets yesterday? What about

VonWillebrands?

Peace Be With You,

Pattie

A True friend knows your weaknesses but shows you your strengths; feels your

fears but fortifies your faith; sees your anxieties but frees your spirit;

recognizes your disabilities but emphasizes your possibilities. ~

Arthur Ward

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I am in need of advice please!!! My son has CVID with complications like

type 1 diabetes, epilepsy, peyer patches, etc and was not given a hopeful

prognosis. He wants more than anything to go to kindergarten, I

personally dont want him to go but I cant deny him that. The problem is

that I cant find a school public, city, county or private willing to take

a immunecompromised child if anyone has experience with this please help!

RE: News

Date: Thu, 10 Aug 2006 15:28:37 -0400

Good news on the levels. What were her platelets yesterday? What

about

VonWillebrands?

Peace Be With You,

Pattie

A True friend knows your weaknesses but shows you your strengths;

feels your

fears but fortifies your faith; sees your anxieties but frees your

spirit;

recognizes your disabilities but emphasizes your possibilities. ~

Arthur Ward

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They can refuse as long as they provide a homebound teacher and he doesnt

want that

RE: News

Date: Thu, 10 Aug 2006 16:49:54 -0400

Is it legal to refuse anyone a public education?

Peace Be With You,

Pattie

A True friend knows your weaknesses but shows you your strengths;

feels your

fears but fortifies your faith; sees your anxieties but frees your

spirit;

recognizes your disabilities but emphasizes your possibilities. ~

Arthur Ward

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Is it legal to refuse anyone a public education?

Peace Be With You,

Pattie

A True friend knows your weaknesses but shows you your strengths; feels your

fears but fortifies your faith; sees your anxieties but frees your spirit;

recognizes your disabilities but emphasizes your possibilities. ~

Arthur Ward

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do you have the IDF guidelines for School personnel???

www.primaryimmune.org

RE: News

I am in need of advice please!!! My son has CVID with complications like

type 1 diabetes, epilepsy, peyer patches, etc and was not given a

hopeful

prognosis. He wants more than anything to go to kindergarten, I

personally dont want him to go but I cant deny him that. The problem is

that I cant find a school public, city, county or private willing to

take

a immunecompromised child if anyone has experience with this please

help!

RE: News

Date: Thu, 10 Aug 2006 15:28:37 -0400

Good news on the levels. What were her platelets yesterday? What

about

VonWillebrands?

Peace Be With You,

Pattie

A True friend knows your weaknesses but shows you your strengths;

feels your

fears but fortifies your faith; sees your anxieties but frees your

spirit;

recognizes your disabilities but emphasizes your possibilities. ~

Arthur Ward

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My son Conner has complicated health issues and we have been able to make it

work at school. The district nurse told me that he has the largest health

plan in the district, it covers information on seizures, adrenal

insufficiency, thyroid, immunodeficiency, anxiety, motor issues, etc.

A thorough IEP should be able to cover your son's needs. Do you have a

physician who could contact the school for you? I would think you could

fight this. Do you mind telling us where you are located?

Take care,

Mom to Conner (12, unknown combined immune deficiency, lymphadenopathy,

asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

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  • 7 months later...

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