Re: hello

[Guest guest]

Hi ,

Finally, another member from San Francisco. I'm so excited!! Now we can start

talking about a California get-together rather than being jealous of all those

east coast potential gatherings I keep reading about :-)

There are some great resources out here in the Bay Area. UCSF has some top

notch ENT/Audiologist combinations (Jackler and Sweetow are world class --

Sweetow was one of the inventors of the new born screening technology that was

probably used on your daughter) and Stanford has the California Ear Institute

(Roberson and Tonokawa are the best there).

They can be a little gruff, but stick to your guns and don't leave their office

until you are happy with the explanations and options they have provided you.

I'm sorry I'm not up on early intervention in California as Patty was born in

Canada and we didn't move here until she was 5

Best of luck, and feel free to contact me directly if you need more local names

or phone numbers.

Sheri

[Guest guest]

Hi , your right - this is THE place for information & support!! Ive

been on the list for at least a year and i still learn new things all the

time. They are really nice when you keep asking the same questions over and

over too. I cant really help those of you with babies too much as mine

was born hearing and developed hearing loss sometime around school age (hes

now 14). Im not sure the grief ever goes away, i still have it. Just the

other day i was talking to my friend about Tobys loss and had to stop and

change the subject...lol. Course his is getting worse and he hasnt accepted

it yet. Im not looking forward to the day that he goes into his grief!

Egads, bad enough dealing with his hormonal teenage years, let alone with

grief involved too.....lol.

Betty

[Guest guest]

Thanks for the information and the offer! Maybe we can have a

pre-holiday-season dinner.

Nearly a decade ago I had a brain tumor (no radiation or chemo that could

have been the culprit for Ellie's hearing) and learned many lessons about

being a proactive " patient " (I've never been patient), and getting over

that terrible " gotta be liked, gotta be a good girl " inclination that can

keep you from getting what you need from overextended, stressed people

who'd just as soon you didn't rock the boat.

So far we've been working with Lamson @ UC, and she seems very

responsive and helpful.

--

-

jules@...

> Hi ,

>

> Finally, another member from San Francisco. I'm so excited!! Now we can

start talking about a California get-together rather than being jealous of all

those east coast potential gatherings I keep reading about :-)

>

> There are some great resources out here in the Bay Area. UCSF has some top

notch ENT/Audiologist combinations (Jackler and Sweetow are world class --

Sweetow was one of the inventors of the new born screening technology that was

probably used on your daughter) and Stanford has the California Ear Institute

(Roberson and Tonokawa are the best there).

>

> They can be a little gruff, but stick to your guns and don't leave their

office until you are happy with the explanations and options they have provided

you.

>

> I'm sorry I'm not up on early intervention in California as Patty was born in

Canada and we didn't move here until she was 5

>

> Best of luck, and feel free to contact me directly if you need more local

names or phone numbers.

>

> Sheri

[Guest guest]

In a message dated 10/4/2000 3:55:32 PM Eastern Daylight Time,

jules@... writes:

<< I've had a few crying sessions but am now coming around to acceptance and

re-recognition that this is a wonderful little girl, and this is part of

who she is. My husband, Jeff, has been much calmer than I have been, and

never had the grief-anger-fear-denial response I had (and still have, to

be honest). >>

Welcome to the list . Let me say that you are very fortunate to have

your baby diagnosed so early. I'm not very familiar with that type of loss.

Is your audiologist suggesting hearing aids at all? It seems as though

mild-moderate in high frequencies may not affect your daughter's speech too

much. I just don't know. My daughter has a severe-profound loss in her right

ear and her left ear is profound. She wears hearing aids and that corrects

her loss to mild-moderate. Have you heard anything about Early Intervention

services? They provide services to children ages 0-3 and your daughter would

be able to receive speech therapy for free if she qualifies for the services.

Your audiologists should be able to give you their phone number. It's always

difficult to find out about this kind of diagnosis in regard to our children.

I don't think I'll ever stop wondering, why ? However, I had to come to

a point when I stopped trying to figure all that out and just got her

everything she needed. The doctors didn't help much, neither did her

audiologist at the time. I had to learn on my own. Thank God for the

internet!!!!! I'm glad you found this list because now you can be more

informed than so many people are. You can know early the kinds of things to

ask for in regard to your daughter which will make her loss so much easier to

live with. My daughter had meningitis when she was 3 months old and the

hearing loss is a result. She never should have had meningitis in the first

place if you ask me! But when we left the hospital with our little ,

alive and vibrant as ever, I was grateful. The hearing loss is definitely

easier to cope with than the possibility that she might have died. I pray the

best for you and your family. Sorry I got so long-winded and

sentimental.

Suzette

Titusville, FL

[Guest guest]

wrote:

>My husband, Jeff, has been much calmer than I have

>been, and never had the grief-anger-fear-denial

>response I had (and still have, to be honest).

Welcome to the list, . I am new to the list as

well (my son was diagnosed with a mild-to-moderate

bilateral sensorineural hearing loss in August, 2000).

I can totally relate to this statement. My question

is, are there ANY husbands who HAVE gone through this

process? Mine didn't and cannot understand why I am

feeling what I'm feeling.

Terri

(5yrs. HOH) & na (4 yrs. so far so good)

__________________________________________________

[Guest guest]

Good question! Lets see, its been 5 yrs since we found out and he still

acts the same as he did back then.

Betty

> I can totally relate to this statement. My question

> is, are there ANY husbands who HAVE gone through this

> process? Mine didn't and cannot understand why I am

> feeling what I'm feeling.

> Terri

> (5yrs. HOH) & na (4 yrs. so far so good)

[Guest guest]

> My question

> is, are there ANY husbands who HAVE gone through this

> process?

Yes! Mine has, and he's been a wonderful source of support. Each person

handles things in their own way, and men have learned from an early age that

men don't show their emotions and that they're supposed to be pillars of

strength. I don't think mine realized all I went through with our son till

he read " Yes, You Can " , the book written by Whitestone's mother. So

while he went through it all, he didn't really understand what I was going

through till years later. He's been to more than one of JD's IEP meetings,

he's taken JD to therapy, he handles the insurance battles, and while he's

not always understood the reasoning behind something I've done for JD (at

least till later), he's always been there helping me do it.

Hugs,

Kay

[Guest guest]

Terri:

I would recommend the book " Not Deaf Enough " listed on Kays website. I

found it very helpful when my mild-moderate daughter was diagnosed in August

1999! Take care!

F

[Guest guest]

Terri wrote-----

My question

is, are there ANY husbands who HAVE gone through this

process? Mine didn't and cannot understand why I am

feeling what I'm feeling.

-------

My husband didn't appear to go through this process, but he's generally much

calmer and easier going than me. He's the kind of guy who just does what he has

to do - truly is my rock! I've not been made to feel that he doesn't understand

or care about my feelings through all this.

Having lost both parents and my sister, I also realize that we all grieve and

deal with loss in very different ways.

Hugh is incredibly supportive - he's probably taken the boys to more audiology

visits than I have. He's also the " fixit " guru with their aids - much better

than I am! I dig around and find out answers and information and try to

understand the big picture (and that's how I dealt with their loss), he just

deals with it as it comes - wish I were more like him!

- how exciting for you re: your marriage!

Take care

Barbara

[Guest guest]

Boy do I wish I had gotten the flu shot. This was the nastiest round of flu we have had in years. It has been almost two weeks now and I still feel drained. Unfortunately I cannot get the flu shot because I am allergic to eggs. However I think next year, I will get the boys vaccinated to protect me. They always catch these things at school and bring them home to me.

Anyone who has a flare up of gastritis or reflux, please remember that it takes two to three months for the lining of the digestive tract to heal once you take away the offending culprit and start meds to help calm things down. And remember when you stop a drug that could be the problem, it can take days to weeks to notice any improvement.

I am down to alternating 3 and 4 mg of prednisone. I hope to off of it completely by the end of the month. I got delayed when I came down with the flu. The doctor didn't want me decreasing the dose while I was still that sick.

Gentle hugs,

Fern

[Guest guest]

Vicki

Been feeling ok. Knees and hands have been quite achy and giving me some trouble but I am trying real hard to keep a positive outlook as I dont want to end up back on disability and unable to work again. Ive only been back 2 months and I wont lie. I can tell a difference in my strength. Have been have a strange buzzing feeling in my feet too and also feel like they are falling asleep more than normal. The buzzing is more irritating though and I mentioned it to Dr. Freak who looked at me as if I had three heads. Said he had no idea why I would be feeling that and basically just disregarded it.

Im back to looking for another doctor again but not having much luck. Are there any other types of doctors (besides rheumys) that treat PM?? Im even considering a holistic doctor here in Orlando. A family friend with lupus goes to him and has been symptom free for quite a while now. Any thoughts on this ??

My cats knead me !!!!

[Guest guest]

Hi ,

You might want to "try on" a rheumy named:

SLADEK, D, MD2501 No Orange Ave, Ste 538Orlando FL 32804Ofc: Discipline: Adult Rheumatology Location: Solo Practice Time Spent: Patient Care Member Type: Fellow - US

He is recommended on the rheumatic.org list of doctors. If you are interested in trying the antibiotic therapy, he would most likely be the one to ask.

I think I know that buzzy feeling you are talking about.....maybe Dr. Freak needs to experience it so he will understand it!!

take care,

Connie

Re: Hello

Vicki Been feeling ok. Knees and hands have been quite achy and giving me some trouble but I am trying real hard to keep a positive outlook as I dont want to end up back on disability and unable to work again. Ive only been back 2 months and I wont lie. I can tell a difference in my strength. Have been have a strange buzzing feeling in my feet too and also feel like they are falling asleep more than normal. The buzzing is more irritating though and I mentioned it to Dr. Freak who looked at me as if I had three heads. Said he had no idea why I would be feeling that and basically just disregarded it. Im back to looking for another doctor again but not having much luck. Are there any other types of doctors (besides rheumys) that treat PM?? Im even considering a holistic doctor here in Orlando. A family friend with lupus goes to him and has been symptom free for quite a while now. Any thoughts on this ?? My cats knead me !!!!

[Guest guest]

Hi .... I think I know that feeling your talking about. I would

have never described it as buzzing but it does fit. Are you wearing

comfortable shoes or dress shoes... ???

Here are three other names in case your tired of men and want to try a

woman. Check out the second one... she states she treats myositis. All

three are AMA members.

PAMELA GAIL FREEMAN MD

Office Phone:

Fax:

Location: 3861 OAKWATER CIR STE 2

ORLANDO , FL 32806

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

CARYN GRACE HASSELBRING MD

Fax:

Email: tssmyth@...

Location: 3861 OAKWATER CIR 2

ORLANDO , FL 32806

Philosophy or Description

MY PRACTICE SPECIALIZES IN THE NONSURGICAL TREATMENT OF MUSCULOSKELETAL

DISEASES INCLUDING ALL FORMS OF ARTHRITIS, TENDINITIS, MUSITIS, CHRONIC

PAIN SYNDROME, AND CONNECTIVE TISSUE DISEASE SUCH AS RHEUMATOID

ARTHRITIS, SYSTEMIC LUPUS ERYTHEMATOSUS, SJOGRENS SYNDROME, SCLERODERMA,

MYOSITIS, MIXED CONNECTIVE TISSUE DISEASE, AND VASCULITIS. I ALSO TREAT

CHILDREN WITH RHEUMATOLOGIC DISORDERS.

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

PATRICIA LOUISE MACLAY MD

Office Phone:

Fax:

Email: plmmd@...

Location: SUITE 125

1603 S HIAWASSEE RD

ORLANDO , FL 32835

Helpful Links Info

[Guest guest]

... After I sent the doctors to you I remembered that someone

has already seen these woman...... didn't you go see one of the women

doctors before?

Vicki

Helpful Links Info

[Guest guest]

Ive already tried twice to get an appointment with Sladek. I have a friend down the street that also has PM and he is her doctor. They dont accept my insurance and arent even accepting new patients who have insurance they do accept. Its true hell in this city and having to work within the "network" doesnt make it much easier for sure !!!

My cats knead me !!!!

[Guest guest]

Freeman and Hasselbring are my two top choices but again, they arent on my insurance and when I called their office to try and finagle an appointment, I was told that the initial appointment would be $250.00 because of the insurance situation. They are supposedly great doctors and I would love to be able to go to them but just cant afford those prices.

As for the buzzing, it happens with or without shoes. I only wear dress shoes once or twice a week as I am lucky enough to work at an office that is very lax in their dress code. Most of the time I wear either my Nikes or my loafers. It is wonderful as I dont think I could stomach heels 5 days a week ever again !!!

My cats knead me !!!!

[Guest guest]

I will definitely check her out and also call my insurance and talk to them.

I just cant stomach the Freak another month. Get this.....I told him how Ive starting aching ll over again and how it scares me because I dont want to end up in the same boat I was in last year with all this and he told me that once the disease is under control that it never returns again !!!!!

HELLOOOOOOOOOOOOO is he really that dense or is it me !!!!!!!

My cats knead me !!!!

[Guest guest]

.... what about the third doctor on the list... maybe she has

your insurance. Also, I think you can contact your insurance company

and tell them your situation. Sometimes they will allow you to go to

someone who specializes in your disease .... especially since it's a

rare disease. Don't talk to the person on the phone...ask to speak to

her/his supervisor or office manager. Go right to the top if necessary.

I know people who have done this very same thing and it works. Make

sure you tell them that your current doctor doesn't listen to you and

knows little about the disease.

Hope this helps...

Vicki

Helpful Links Info

[Guest guest]

.... here are the insurances that Dr. Maclay has listed...now

maybe she's added to her list.

Maclay 

Health Plan Participation

CAPP CARE INC.

AMERICAN MEDICAL

SECURITY HEAL

BLUE CROSS

BLUE SHIELD OF FLOR

Helpful Links Info

[Guest guest]

I agree !!! It really has had me pretty depressed and that is why I guess Ive been so quiet here lately. When I get this way, I clam up and just crawl into my little hole. I will call Aetna first thing Monday afternoon when I get home from work.

My cats knead me !!!!

[Guest guest]

Connect the dots - la la la la la (oops sorry, I was having a Pee Wee Herman moment) !!! Im going to buzz Freak if he doesnt stop acting like one !!!

My cats knead me !!!!

[Guest guest]

Yes Ann-Marie, please send it to me. If you wish you can send it off list but Im sure others may like to have it also. I was supposed to be in Gainesville this weekend for a cat symposium but just couldnt muster up the energy. It isnt that far (about 1 1/2 hours). I used to take my youngest son there when he had appointments at Shands Hospital. Thank you !!

My cats knead me !!!!

[Guest guest]

PPO thank the good Lord !!!!

My cats knead me !!!!

[Guest guest]

OH MY GOSH.... This doctor is insane. Well, it's for sure he doesn't do

any extra reading to keep on top of things. I wouldn't walk..... I

would RUN to another doctor. That just gave you more ammunition for the

insurance company.

Have a great day.

Vicki

Helpful Links Info

[Guest guest]

Fire Freak! I've buzzed too, at times, especially when I'm overly tired. I

can't believe he doesn't connect the dots!

Ann-Marie

_________________________________________________________________

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