Question for all

[Guest guest]

I suggest you and your sister, take Gail's advice and contact your state

representative, or Judy Biggert right away. Bring video of your sister to

show.

From: IPADDUnite [mailto:IPADDUnite ] On

Behalf Of G Mrozak

Sent: Wednesday, July 22, 2009 11:03 AM

IPADDUnite

Subject: Re: Re: Question for all

This is a wild guess, but now that I recall your sister's story and have

re-read the bureaucratic lingo, I'd say that they might be saying--

" Her health care needs are too complicated for the program we offer. You

need to try a basically medical kind of program. "

OR

" We can't fund something so intensive in a home-based setting. "

They are probably viewing your sister as a candidate for a nursing home

arrangement.

I know you are aggravated beyond belief, but it might be worth a try to call

Div of Rehab Services, and tell your story, including what these clueless

people told you. The reason I suggest it is because I think that DRS will

say that this is wrong, and they may be able to steer you to the right

people.

My guess is that you'll be talking to your legislators before this is over.

Maybe you should start now. Ask them why someone in your sister's situation

cannot get any kind of help.

-Gail

From: sweettart_60638 <sweettart_60638@...

<mailto:sweettart_60638%40> >

Subject: Re: Question for all

IPADDUnite <mailto:IPADDUnite%40>

Date: Tuesday, July 21, 2009, 7:44 PM

In response to my first post:

The story goes like this, my father died when we were very little, my mother

passed away 2 years ago, Jodi had no other place to go, so me and my sister

Rose took Jodi in and we are caring for her. Since then we have been trying

to get services for my sister. We are looking for a higher functioning ICF

(Alden Trails) or a CILA for her residence. Jodi requires a nurse for her

g-tube feedings, and for her medicine distribution and suctioning support.

Jodi has Arthrogryposis, Epilepsy, Asthma, Pierre Robin syndrome and cannot

talk/swallow. She wears AFO leg braces to help her walk, and she cannot

completley take care of herself. For the time being we are basically passing

her house to house so we can work/care for her because she cannot be left

alone ever. which is very stressful for on all of us, she needs a stable

home and her own life.

So Jodi qualifies for " emergency status " and at the time their were no

openings for a higher functioning ICF so we in turn applied for Home based

support services and were denied. Now Alden Trails has an opening and my

caseworker at Suburban Access is telling me that Jodi cannot get placed into

an ICF now because she was denied the home based support services. The

reason they denied her is " Does not need active treatment " ? and they gaver

her alternative support services: Dept. of Rehab services and Progress

Center for Independent Living. I don't know what any of this means and don't

understand why she doesn't qualify for an ICF with her medical/physical

emergency needs. I don't understand what all this means and why she cannot

get placed in an ICF, doesn't she have a right to services? Everyone that I

talk to are telling me that something is not right with her case. I am 29

years old, my other sister Rose is 27 basically we are newbies with working

with DHS, etc... Any light you can shed on this would be very much

appreciated.

Thanks Dawn

>

> I applied for home based services for my sister and got this response,

does anyone know exactly what this means? " you do not need active treatment

for your developmental disability rather your limitations appear to be

related to your medical condistion requiring nursing assistance rather than

active treatment " I am trying to get a clear answer from my case worker and

I am having no luck, in which I was also told that she cannot get into an

ICF because of the results of this letter, does anyone know if this is true

of not?

>

> We only applied for Home based support, and basically if we didn't apply

for the home based services she could of been placed in an ICF? They have an

opening at an ICF that she wants to go to, and yet my caseworker is saying

she can't be placed, yet she is an emergency status, and has a Developmental

disability and requires 24 hour nursing, where else is she supposed to go?

>

> Something doesn't sound right, and I am trying to understand this, can

anyone help?

>

>

> thanks

> Dawn

>

[Guest guest]

As a matter of fact yes.

I haven't lost anything to speak of since the beginning of December, maybe just

a pound or two at the most, but I'm definitely changing shapes.

Just this week I realized that I'm now suddenly hooking my bra on the tightest

hooks and there are 4 sets of hooks and prior to this I was using the loosest

ones. Underwear and bathing suits are both hanging on my rear.

I haven't actually changed clothing sizes, although I guess I probably could,

but my clothing is definitely fitting differently. My shirts now hang straight

down from my breasts not touching my stomach or hips.

I was working out consistently 4 days a week and at the beginning of December

I'd added a short treadmill workout on two of the other days, but on the 20th I

fell on the ice and this week is actually the first week I've been able to get

in 4 workouts again and they've been done VERY slowly and carefully.

I don't know what's going on, and don't really care as long as it continues.

It's really quite interesting to watch the changes.

fireangel

>

>

>

> does anyone else seem to be losing more inches than pounds? i have been the

last few months...   its great in some ways annoying in others....

>  Does it have anything to do w/ me at the gym five - six days a week ?  I

wonder.....

>

> Serena

>

[Guest guest]

>does anyone else seem to be losing more inches than pounds?

This time around, a resounding YES!

I was just telling my husband yesterday that not only have I lost a few

inches (mostly in the hips and chest, including the bust, unfortunately)

but the mounds of fat I still have on my thighs and belly become

jigglier. My boys (husband and aforementioned 26 yo son) then referred

to an old episode of the Simpsons when Doctor Hibbert was watching Homer

on a treadmill watching the flubber undulate around, commenting on how

hypnotizing it was. See what I have to put up with in this house? LOL

Sue in NJ

[Guest guest]

Anyone from Texas been to a good dr that knows/ understands samters? If so please adviseSent from my iPhoneOn Dec 27, 2010, at 6:12 PM, "anaturallearner" <contact@...> wrote:

Back in October I reported that after ankle surgery I regained my sense of smell. It lasted for 3 months - a record for me. Even after sinus surgery to remove polyps (and I've had five of those) it only lasted 3 weeks at best.

I wondered if it had been because I had vomited rather forcefully, rearranging the polyps perhaps, but when I saw my ENT after for my post op visit after inserting a T-Tube in my ear, he said my orthopedic surgeon probably gave me a dose of dexamethasone intravenously during the ankle surgery. He check my polyps and the right nostril had gone from about 90% blocked down to 30%, with a similar effect in the left nostril. I have chronic polyp disease in my frontal and ethnoid sinuses too, and suspect they had shrunk as well.

Next time the ENT wants to operate to remove polyps I'm going to ask about intravenous dexamethosone as an alternative, provided it is okay with my hematologist. :-)

cheers

Beverley