sigh

[Guest guest]

In a message dated 7/24/01 6:16:01 PM Pacific Daylight Time, michellefour4@... writes:

Me too! Can your doctor give you samples until you do get medical coverage?

I'm not sure...I suppose I could ask?

Deb

[Guest guest]

Me too! Can your doctor give you samples until you do get medical

coverage?

Chelle

> I sure hope I get some kind of medical coverage or income soon,

because I

> just picked up the eye drops and they were almost $90!!! I guess

I'm just

> supposed to go blind.

>

> Deb

[Guest guest]

There are places you can get free meds of reduced according to your income!!!!!!!!!

http://www.themedicineprogram.com/info.html

http://pages.prodigy.net/turnip/freemeds.htm

Talk to your Dr. he should know ways for free drugs in your town. Chin Up )

{{{ Seeing Hugs }}}

Helen

I sure hope I get some kind of medical coverage or income soon, because I just picked up the eye drops and they were almost $90!!! I guess I'm just supposed to go blind.

Deb

"Friends are God's way of taking care of us."

[Guest guest]

Hi Deb

Try not to let the food stamp thing get to you. I get a small amount and it

helps I was like you and did not like dealing with going in to the meetings

etc, but you should only have to do it once then things will be set up and mine

is very simple on a little debit card and you can call the 800 number to check

the balance. Be tough and hang in there Hugs Colleen

[Guest guest]

In a message dated 9/3/01 1:31:07 PM Pacific Daylight Time, ccomm777@... writes:

Hi Deb

Try not to let the food stamp thing get to you. I get a small amount and it helps I was like you and did not like dealing with going in to the meetings etc, but you should only have to do it once then things will be set up and mine is very simple on a little debit card and you can call the 800 number to check the balance. Be tough and hang in there Hugs Colleen

I have my link card and have used it, but *now* I have to figure out how to get the food stamps. I read the form and am lost, so I have to either call or go in there tomorrow morning so I can ask, no matter the reason I'm there, I *must* see the worker for him to take care of any problems, that's just how they are down there 'oh, you have a worker, thank goD I don't have to deal with you and your problem' etc. As its 'clearly' (not clear to me!) stated on the back of the link info papers, he should have a blast insulting me about my intelligence or what he believes is a lack thereof. I swear, someone from mensa would *not* know how to do everything the first time! I guess they just assume I'm now on 'welfare' so I must be trash and 'know the ropes'! But ya know what? He had better not call me poor white trailer trash.....Cause I'm plain ol white trash, I'm not trailer trash! lol And no, I don't believe people who live in trailers and/or are poor are trash...There is rich trash, well off trash, middle income trash, poor trash, etc. Its something that fits into ALL categories and not just stuck to one group.

You know, years ago when I had 'plenty of money' (just after my Mother died), I was online and in chat rooms same as now (though I rarely go to a chat room anymore, I'll explain why not if anyone's interested! lol) but there was this guy in the Sac chat who seemed to spend his day going in and out of the room calling us 'welfare frauds' and 'lazy' and preaching about getting a job instead of 'sucking off the government teat' etc. He assumed everyone online during the day was a slacker and trash et all bad things. (course, being on welfare to him automatically put you into the 'slacker/trash category!) If he'd spent any time at all talking to these people (myself included) instead of alienating 'us,' he'd have known several were AT WORK and ON LINE, one was on permanent SSDI because of an accident on the job that left her unable to work, one (me) was 'self supporting' etcetcetc. He just didn't care, he loved to put people down.

A couple of years ago I saw this guy (not that guy!) in a car driving ahead of me, he had a bumper sticker that said 'work harder, millions on welfare are depending on you!' I wasn't on welfare, but that hurt! Not everyone on welfare is a fraud and most are not on it for long, unless they have children and then they're sent to training for jobs etc. Anyway, this car had a LOT of 'hippie' paintings on it and bumper stickers (no, no problem with that, it was what a lot of them said!) and I thought 'I'll never see him again, thank goD' but.....A few months later I was on my way to tower of records for the new Metallica CD (load! would you believe they were in the parking lot giving a free concert when I was there getting that CD and I DID NOT NOTICE!! ARG!!!!!! lol Agoraphobiacs are very good at wearing blinders when out!) Anyway....GUESS WHAT I SAW?????? Ayup, that car! And GUESS WHAT???? The entire passenger side was bashed in! I guess someone else didn't much care for that sticker either!

When I was growing up, my SD (sperm donor) left my Mother with 6 of his kids and me (as the youngest that made me a baby! lol), she did the best she could! She applied for and received welfare for us kids until I was old enough to be in school for half the day and then she took a secritarial class, got a job and got off welfare! THAT is what the system is for! That is what it is, for the majority, used for! We were never 'rich', but we got to do a lot of things that a lot of kids don't get to do! That tells me (though I already knew!) just how strong a woman my Mother was, it does not make me think 'oh, my Mother was a welfare slacker/fraud'! My oldest sister graduated highschool and was pregnant at her graduation, she spent from then to her 40's being on welfare because she had two more kids and had never had a job, but...As soon as Amy (her youngest) was in high school, she got job training and has since worked at a popeye's chicken...Now, that may be 'laughable' to some, but I see it has FANTASTIC!!! She is not totally off the system, but she makes her own way as far as I'm concerned!

My sister Mylaine was on welfare while her first two children were babies, but she got job training too, got a job at McD's, worked her way through night school and is now an exec with Intel!

I could go on and on, but....(I can hear the snores! lol)

Deb

[Guest guest]

No snores here! On my job with the CB I come across lots of people on welfare, most and I say most would rather be working, but who can work for 6.00 hour,support

two or three children, pay rent, and buy stuff they want and need. In New York it has to be that if on welfare, one must get a job within 6 months or lose benefits, but the state tries to aid folks who want jobs, job training, resume writing, a car's upkeep if one owns one, bus passes, food stamps for another year or until one is on their feet, child care, day care that is, the State tries to help in any way, of course if one is disabled this will not apply. we once had to go and get help 30 years ago, he lost his job, we needed oil, at that time we told a very rude worker it was only until a job became available, then hubby was told, we would have to sign the house over to them, well having just bought a house, we said forget it lady, we got a 50 gallon barrel, had someone make it into a wood stove cut wood and lived with that for the winter

You are not trailer trash, I know some very nice people living in trailers, some awful people too! I also know people in very nice houses that are trashy, some people are nice, there are houses I will not go into for fear. Never be ashamed to ask for help, I would turn a worker who hassles you right into the head office. They forget that THEY may need help at sometime in their lives!

Just remember that someday things will improve, the sun has just gone behind the clouds for a little while.

[Guest guest]

Awww Deb, Don't let them get you down !!! Show them yu are stronger than that! No one has the right to belittled another person! It is his Job to Help you!!! Not to make you feel 2 inches tall! Walk in there with your head held high and when you don't understand something, Ask him to please explain it to you as you haven't the slightest idea what he is reading!!!!!

And don't forget to always look him square in the eyes at each question!!!

)

{{{ Good Luck Hugs }}}

Helen

I'm *really* not looking forward to going (or calling) GA tues and talking to worker about how to get food stamps (which I've qualified for)...he's already put me down for not understanding how to find a place downtown, I can hardly wait to see his reaction to my not totally understanding and knowing without experience, how to get food stamps. Should be fun and self esteem boosting.

Deb

Please Remember my Girls in

Your Prayers !!!

          When you are your weakest, remember, God is always strong. No burden is too great, when you rely on Him.

[Guest guest]

No snoring here Deb!!! Great Talk you gave!!! My hats off to ya! Good luck Tues.

Hugs

Helen

I could go on and on, but....(I can hear the snores! lol)

Deb

Please Remember my Girls in

Your Prayers !!!

          When you are your weakest, remember, God is always strong. No burden is too great, when you rely on Him.

[Guest guest]

In a message dated 9/4/01 12:23:07 AM Pacific Daylight Time, angelbear1129@... writes:

No snoring here Deb!!! Great Talk you gave!!! My hats off to ya! Good luck Tues. Hugs Helen

I could go on and on, but....(I can hear the snores! lol)

Deb

Now see, this (what I'm about to waffle about) is what *I* don't get, personally........Aug. 17th, friday, I'm outside the GA building having a smoke...Actually, I prefer staying outside, inside is as quiet as a tomb (I kid you not, not to be too crude, but if someone farted on one end of the building, you'd hear it on the other!) So there I am standing outside, people come, people go, some come out to have a smoke, we chat, they go back in, etc. Then I'm out there by myself and these two perfectly healthy guys come walking up (no limps, no gimps, no missing limbs)...One of them goes inside while one of them plants himself *very* close to me. He asks how I'm doin, I say fine except for a migraine, he says my husband doesn't do a very good job then, I say I have no husband, he says well there you go that's the problem, I can fix that! I laugh (sarcastically but I'm pretty sure he missed the sarcasm) then his friend comes back out and he explains the convo to his friend. His friend says 'oh yeah, we can take care of your problem for you' then the guy who's been standing out with me says 'what's your phone number?' I say 'I don't have one of those' he says 'what's your address?' I say 'don't got one of them either' he says 'I have a van, where you gonna be?' I said 'nowhere near your van' I *think* he finally understands and he and his friend leave.

As far as I could tell, there was nothing wrong with either of these two guys, why are they on general assistance? Why aren't they working? Please give me some hypothetical (as we *really* will never know for sure) reasons why these two guys need GA and are not working?

Deb

[Guest guest]

Maybe they have invisible illnesses like a Lot of us do! To look at me and not know me, you wouldn't know anything was wrong with me!

Hugs

Helen

Now see, this (what I'm about to waffle about) is what *I* don't get, personally........Aug. 17th, friday, I'm outside the GA building having a smoke...Actually, I prefer staying outside, inside is as quiet as a tomb (I kid you not, not to be too crude, but if someone farted on one end of the building, you'd hear it on the other!) So there I am standing outside, people come, people go, some come out to have a smoke, we chat, they go back in, etc. Then I'm out there by myself and these two perfectly healthy guys come walking up (no limps, no gimps, no missing limbs)...One of them goes inside while one of them plants himself *very* close to me. He asks how I'm doin, I say fine except for a migraine, he says my husband doesn't do a very good job then, I say I have no husband, he says well there you go that's the problem, I can fix that! I laugh (sarcastically but I'm pretty sure he missed the sarcasm) then his friend comes back out and he explains the convo to his friend. His friend says 'oh yeah, we can take care of your problem for you' then the guy who's been standing out with me says 'what's your phone number?' I say 'I don't have one of those' he says 'what's your address?' I say 'don't got one of them either' he says 'I have a van, where you gonna be?' I said 'nowhere near your van' I *think* he finally understands and he and his friend leave. As far as I could tell, there was nothing wrong with either of these two guys, why are they on general assistance? Why aren't they working? Please give me some hypothetical (as we *really* will never know for sure) reasons why these two guys need GA and are not working?

Deb

Please Remember my Girls in

Your Prayers !!!

          When you are your weakest, remember, God is always strong. No burden is too great, when you rely on Him.

[Guest guest]

In a message dated 9/4/01 1:06:39 AM Pacific Daylight Time, dwomann65@... writes:

? Please give me some hypothetical (as we *really* will never know for sure) reasons why these two guys need GA and are not working?

They're big JERKS! And noone will hire them! or sleep with them!

Meows, & headbutts,

& Viscious =^..^=

[Guest guest]

{{{Soft Hugs }}} Your Way also Denisa !!! Sorry you are feeling so down ( Hold in there and look for the Good !!! Mush Love your way !!!

{{{ Special Hugs }}}

Helen

Big Sigh......still down, still awake I HATE this feeling

"Always remember that you are not the only one who has ever felt rejected, unloved and lonely at sometime. Reach out and help someone else in trouble, and you could be amazed at the changes in yourself and your life."- Anonymous

[Guest guest]

((((((((( HUGS )))))))))

Denisa, that is a hard thing to do for a lot of folks... love Ya Helen

and I went to the visiting hours at the funeral home tonight. took me because I'm on limited driving privileges by my doctor due to the cyst. I get easily confused, kinda like a stroke victim.

Well, I'm okay. Gonna watch my man (Sebastian Bach) on VH1, then go to bed.

Denisa

[Guest guest]

Oh wow, Diane. I am so sorry. As I read your note, I just got a sick

feeling in my stomach. It never occurred to me that IV meds *could*

fail a sinus infection. I know, naive. Wow. I don't know how much you

feel like talking about this and if you don't I totally understand,

but what would they be hoping for with Surgery? Does Kody have a

problem with his anatomy (deviated septum, etc), or still have

adenoids? Or, is there a procedure that is a last resort that may

help him that has nothing to do with fixing one of those things? I

can't even imagine the level of stress and frustration you are going

through right now, I am so so sorry. ((HUGS))

[Guest guest]

Diane,

I am so sorry that the sinus infection has gone this far. It seems truly

unbelievable. I don't think most kids could handle a year of a constant

sinus infection. I will be praying even more than usual! I wish we were

closer, I feel like there's not enough that I can do. Please know that I

will be thinking of your entire family. Keep your chin up--Kody too!

Sandi, 's Mom

[Guest guest]

Gosh Diane, I am really sorry. I know nothing I can say will make you

feel better (I am so new, you don't even know me!), but I really want

to. I really hope that whatever they do will give you all the

answers you need to heal Kody. ((big fat hugs))

Jen

[Guest guest]

I never imagined that the IV meds would fail either. I am not really

sure what the surgery would entail. Pediatrician didn't know either. The

infection is so bad that they can't tell if there is scar tissue

blocking the sinuses, or what. Also, Kody already had his adenoids out

last year. I think it will entail cleaning out the infection at least,

biopsying it, and really getting a good look at what is going on in

there. I am just reeling from this. I am now really afraid of what they

will find. And afraid of what will now happen if we can't get this taken

care of. This is just so far beyond what I could ever even dream could

happen with a sinus infection. I was frustrated before, but feeling

confident yet that it would be tough but something would help. Now I am

starting to be scared.

Diane, Mom to Kody

[Guest guest]

Dear Diane,

I was so sorry to hear that IV antibiotics failed for Kody's sinus

infectiion. It must be very frightening to have to face sinus surgery not

knowing what the docs are going to find. I'm praying that the ENT docs will

be able to correct any scar tissue which caused the blockage and that the

Infectious Disease docs will be able to come up with a therapy to get rid of

whatever is causing the infection.

Martha (mom to Chrissy IgA deficiency etc.)

[Guest guest]

Diane,

Somewhere I read that adenoids could grow back. It's worth a shot to have it

checked.

How about tonsil removal? The ENT wouldn't remove Autumn's tonsils because

she'd never

had a tonsil infection, but she did say that she has done it in extreme cases of

infection.

I really don't have any answers for you. IV meds always worked for us. I'll be

praying

for you. I know this is so tough for you now. Give Kody a hug from us

(((HUGS)))

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic

sinusitis, and allergies), and Duncan (12 months)

[Guest guest]

Hey Group, our son Carson had his adenoids removed in 2000. He had recurrent

adenotits and a 2 yr delayment in speech because of the chronic fluid build

up in both ears. So they also put in ear tubes. His vocabulary got better

right away and he had a lot less temper tantrums. This year I noticed I was

always repeating myself and Carson 's conduct grade at preschool was

dropping. ( He was usually very good ). After a visit to his asthma and

allergy Doctor ( Carson had another bad sinus infection) he ordered a xray of

Carson's sinuses.The nurse told me he was all gray on the film no white

spots and his adenoids looked large. I told her she had the wrong film. but

she and the Doctor confirmed that Carson's adenoids grew back. This time they

removed his adenoids and tonciles and put in different ear tubes and flushed

out his sinuses. He vocabulary is only 1 yr behind now. He should catch up ,

with lots of work.I just wanted yall to know that adenoids can grow back and

as always it's left to us Mom's to be on alert for any and everything .

Carson - age 5 1/2 selectve IgA Deficency, asthma ,chronic allergies and

infections, sinusitis.

[Guest guest]

> Somewhere I read that adenoids could grow back. It's worth a shot to

> have it checked.

> How about tonsil removal? The ENT wouldn't remove Autumn's tonsils

> because she'd never

> had a tonsil infection, but she did say that she has done it in

> extreme cases of

> infection.

I didn't know adenoids could grow back. Interesting. Kody already had

his adenoids and tonsils out last year. He didn't have much trouble with

his tonsils, but since the adenoids had to come out, they decided that

they would rather do it all at once than have to put Kody through

surgery again later. There are several things that I want the doctors

to check on Kody, I am making a list! Some pertain to his Di

Syndrome, but some for the sinus trouble too. Here is a weird thing,

while researching the sinus, fungus infections to be exact, I found an

article by this doctor that wrote about a guy in Africa that inhaled

some wild mushroom spores and literally had a mushroom growing in his

sinuses!!! How weird is that?! Ugh. At least I know that Kody's ct scan

didn't show a mushroom in there! LOL

Diane, Mom to Kody

[Guest guest]

Diane,

I was surprised when I found out adenoids could grow back also. I think

it's pretty rare--didn't happen with us--but if it could happen, it's worth

looking at.

I've been praying for Kody these days. Hope you're doing well also.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (12 months)

[Guest guest]

Are you using a combination of I.V. drugs? My sons have been on I.V.'s a lot

for sinus infection and pneumonia and it always takes a long time 4-6 weeks, but

we have found that using a combination works better than one drug, Your child

might be resistant to that drug. Have they tried to do cultures? Just

suggestions. Good Luck!

God Bless,

(mom to 13, CVID, Inflammatory Bowel Disease, Arthritis, Barretts

Esophagus, GERDS, Severe Steroid Dependent Asthmatic, Bronchietasis, and Cameron

7, CVID, Severe Steroid Dependent Asthmatic, chronic sinusitis and two beautiful

healthy children Rodney 13, 12)

Sigh

Okay....so, has anyone ever have IV meds fail for a sinus infection? Of

course, your realize we are talking a marathon sinus infection here. The

second ct scan showed absolutely no change except for it to be worse

(that amazes me, how could it possibly get worse?). So what is left I

guess is surgery. I am going to call out to Dr Cunningham Rundles in NY

to get her opinion, but I am rather disappointed in her in that when I

have called her before she never returns the call, and it is literally

weeks later that I might get a note in the mail. We have tried

everything. I hate the thought of surgery but at the same time, realize

that something has to happen to help Kody. I am just at my wit's end

here. So Kody has an appointment with our ENT on the 18th, that was the

soonest we could get in, and I am just so upset about this whole thing.

This is truly the sinus infection from hell. In August it will be one

year. How insane is that?

Diane, Mom to Kody

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

So last week Kate had a red, sore throat on Tues, then came down with a

blazing headache and 103.3 rectal temp. Doc diagnosed " enterovirus " for Em. I

figured they were different manifestations of the same bug.

Then Sunday we saw our neighbors outside and walked over, turns out the baby

was inside because she was sick... too late at that point. Older girl seemed

fine until she coughed right in Kate's face (accidentally).

Yesterday Kate ended up with a 104.8 rectal temp (!!!!!!!!!), oh she was so

hot. Took her at the very last minute (they stayed late for us) and she has a

new raw-meat looking sore throat (he says it's new, not the same as last week,

new virus, which makes sense). Today awoke with your typical upper

respiratory stuff, congestion, cough, etc. She woke up and said, " I caught a

booger

virus " ()!!!

Kate is ultra high maintenance, I was up all night with her, and even though

Em's sick too she's getting the short end of the stick. HELP! Motrin is not

keeping a handle on Kate's big fevers, she was back to 104 rectal by midnight

and again this morning. Seems okay otherwise though, she's smiling and playing

in between fussing a bit. Obviously not dangerously sick. But it's sooooo hard

with two now.... being nursemaid to one sounds like a dream at this

point!!!!!!!!!!! arrrrrrgggggghhhhhhh

Lord, give me strength....

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 8/12/03 10:01:14 AM Pacific Daylight Time,

bunneegirl@... writes:

> HELP! Motrin is not

> keeping a handle on Kate's big fevers, she was back to 104 rectal by

> midnight

> and again this morning.

Hi ,

is exceptionally good at spiking a temp from time to time, but only

with certain illnesses!! Have you tried alternating Tylenol with the Motrin

every three hours?? When Bri does this, the only other thing that really helps

is a lukewarm bath--or should I say lots of lukewarm baths?? I make sure to

run the water over him to cool him down. Maybe you could just put both of your

daughters in the bathtub!! You must feel like you're juggling.

Hang in there!! I'm sending prayers your way.

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.