Results from yesterday's doctor appointment

First, the BEST the HAPPY news ----- I had an auditory exam (did very
poorly) while there, quite unexpected, got fitted for, then ordered hearing
aides! Yippee! Poor Jim. That means I'm going to be able to hear what all
he says in about two weeks. We were very impressed with the audiologist.
She explained everything in great detail; amswered all of our questions,
well, mainly Jim's questions, because I didn't know he had that in mind when
we went. He had talked about doing it this *year* but I never dreamed so
soon.

Then the doctor appeared. Still the same nice guy he was when consulting me
in the hospital. He still did not alleviate and soothe my nerves as to the
posibility of Pemphegus, though.
http://en.wikipedia.org/wiki/Pemphigus He just gave me more details of what
he would be doing within my mouth.

He saw three to four teeth he wanted the dentist to offer an opinion on,
and possibly correct before he does a biopsy of my mouth.

The very most fun part of the whole day was buying me an iPod! Haven't been
able to stay awake long enough yet to set it up yet. ZZZZZZZ


Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

He (doctor) understood I am nervous about this disease (Pemphigus), and he
is putting the biopsy off until the dentist does his bit to help alleviate
some overlapping pain in my mouth, but if my mouth is going to hurt really
bad regardless, 24/7, and I'm going to be nervous, uptight, scared, etc.,
until then, I think I'd rather go on and have the biopsy done right away.
Tomorrow is an appointment with my PCP. Guess I ought to talk it over with
him then.

I've got to go and figure out how to do my iPod. Been wanting one for a
long time. He who hurts, oughta PLAY.... right?

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm


"Billie" <someone@swbell.net> wrote in message
news:Lwtoj.9983$hI1.1615@nlpi061.nbdc.sbc.com...
> First, the BEST the HAPPY news ----- I had an auditory exam (did very
> poorly) while there, quite unexpected, got fitted for, then ordered
> hearing aides! Yippee! Poor Jim. That means I'm going to be able to
> hear what all he says in about two weeks. We were very impressed with the
> audiologist. She explained everything in great detail; amswered all of our
> questions, well, mainly Jim's questions, because I didn't know he had that
> in mind when we went. He had talked about doing it this *year* but I
> never dreamed so soon.
>
> Then the doctor appeared. Still the same nice guy he was when consulting
> me in the hospital. He still did not alleviate and soothe my nerves as to
> the posibility of Pemphegus, though.
> http://en.wikipedia.org/wiki/Pemphigus He just gave me more details of
> what he would be doing within my mouth.
>
> He saw three to four teeth he wanted the dentist to offer an opinion on,
> and possibly correct before he does a biopsy of my mouth.
>
> The very most fun part of the whole day was buying me an iPod! Haven't
> been able to stay awake long enough yet to set it up yet. ZZZZZZZ
>
>
> Ragdoll Billie on the Road to Remission
> http://andlifegoesononedayonestepatatime.blogspot.com/
> http://www.caringbridge.org/visit/billiewages
>
> Striving for a world without Myasthenia Gravis
> http://www.myasthenia.org/amg_whatismg.cfm
>



--

Hearing aids?..ipods?

We are going to start calling you robo-billie!
:-)

Hehe..its very awsome we live in a time with all this great technology isnt
it!

KROM


"Billie" <someone@swbell.net> wrote in message
news:Lwtoj.9983$hI1.1615@nlpi061.nbdc.sbc.com...
> First, the BEST the HAPPY news ----- I had an auditory exam (did very
> poorly) while there, quite unexpected, got fitted for, then ordered
> hearing aides! Yippee! Poor Jim. That means I'm going to be able to
> hear what all he says in about two weeks. We were very impressed with the
> audiologist. She explained everything in great detail; amswered all of our
> questions, well, mainly Jim's questions, because I didn't know he had that
> in mind when we went. He had talked about doing it this *year* but I
> never dreamed so soon.
>
> Then the doctor appeared. Still the same nice guy he was when consulting
> me in the hospital. He still did not alleviate and soothe my nerves as to
> the posibility of Pemphegus, though.
> http://en.wikipedia.org/wiki/Pemphigus He just gave me more details of
> what he would be doing within my mouth.
>
> He saw three to four teeth he wanted the dentist to offer an opinion on,
> and possibly correct before he does a biopsy of my mouth.
>
> The very most fun part of the whole day was buying me an iPod! Haven't
> been able to stay awake long enough yet to set it up yet. ZZZZZZZ
>
>
> Ragdoll Billie on the Road to Remission
> http://andlifegoesononedayonestepatatime.blogspot.com/
> http://www.caringbridge.org/visit/billiewages
>
> Striving for a world without Myasthenia Gravis
> http://www.myasthenia.org/amg_whatismg.cfm
>

Jim won't leave me unattended in the living room at all any more, so I was
looking for ways of having my *noise* after he'd go to upstairs to bed.
I've been wanting an ipod for a while. The hearing aids I need badly. My
doctors won't know what to think when I don't have to sit right under their
noses to hear them. That was the last thing my pain specialist said to
me..... Yes, get you some hearing aids..... coarse I cannot afford to fly to
Brazil every Christmas like he can either. He's another of my sweet heart
doctors.

Just wait till the family is together, and I can hear what all is being
said.... hehehehe..... can't wait!!! It's been almost 20 years since my
other ones. She said the levels are normal, mild, moderate, deaf, and I was
moderate, and understanding words was worse (didn't need a test to tell me
that!!). You didn't even know I couldn't hear you that well, did you!

How are you doing Krom? I think about you often. Tell me how you're
feeling these days.... for REAL, not a glib answer! I am showing signs of
the treatment working.

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm


"krom" <thekromremoveremove@hotmail.com> wrote in message
news:fnue5p$4sp$1@aioe.org...
> Hearing aids?..ipods?
>
> We are going to start calling you robo-billie!
> :-)
>
> Hehe..its very awsome we live in a time with all this great technology
> isnt it!
>
> KROM
>
>
> "Billie" <someone@swbell.net> wrote in message
> news:Lwtoj.9983$hI1.1615@nlpi061.nbdc.sbc.com...
>> First, the BEST the HAPPY news ----- I had an auditory exam (did very
>> poorly) while there, quite unexpected, got fitted for, then ordered
>> hearing aides! Yippee! Poor Jim. That means I'm going to be able to
>> hear what all he says in about two weeks. We were very impressed with
>> the audiologist. She explained everything in great detail; amswered all
>> of our questions, well, mainly Jim's questions, because I didn't know he
>> had that in mind when we went. He had talked about doing it this *year*
>> but I never dreamed so soon.
>>
>> Then the doctor appeared. Still the same nice guy he was when consulting
>> me in the hospital. He still did not alleviate and soothe my nerves as
>> to the posibility of Pemphegus, though.
>> http://en.wikipedia.org/wiki/Pemphigus He just gave me more details of
>> what he would be doing within my mouth.
>>
>> He saw three to four teeth he wanted the dentist to offer an opinion on,
>> and possibly correct before he does a biopsy of my mouth.
>>
>> The very most fun part of the whole day was buying me an iPod! Haven't
>> been able to stay awake long enough yet to set it up yet. ZZZZZZZ
>>
>>
>> Ragdoll Billie on the Road to Remission
>> http://andlifegoesononedayonestepatatime.blogspot.com/
>> http://www.caringbridge.org/visit/billiewages
>>
>> Striving for a world without Myasthenia Gravis
>> http://www.myasthenia.org/amg_whatismg.cfm
>>
>
>



--

Well im very glad you are doign better and getting new toys!
i'm doing pretty darn good now that im regularly taking the vite d..i was
in bad shape..could barely move..now i can walk again.

If before i was a 2 out of 100..right now im like 80 out of 100..so im
pleased..

Right now its all the wait on the bloodwork to return..i dont see the endo
till the 20th and the nurologist about the same time.

KROM

"Billie" <someone@swbell.net> wrote in message
news:fDCoj.10037$hI1.9213@nlpi061.nbdc.sbc.com...
> Jim won't leave me unattended in the living room at all any more, so I was
> looking for ways of having my *noise* after he'd go to upstairs to bed.
> I've been wanting an ipod for a while. The hearing aids I need badly. My
> doctors won't know what to think when I don't have to sit right under
> their noses to hear them. That was the last thing my pain specialist said
> to me..... Yes, get you some hearing aids..... coarse I cannot afford to
> fly to Brazil every Christmas like he can either. He's another of my
> sweet heart doctors.
>
> Just wait till the family is together, and I can hear what all is being
> said.... hehehehe..... can't wait!!! It's been almost 20 years since my
> other ones. She said the levels are normal, mild, moderate, deaf, and I
> was moderate, and understanding words was worse (didn't need a test to
> tell me that!!). You didn't even know I couldn't hear you that well, did
> you!
>
> How are you doing Krom? I think about you often. Tell me how you're
> feeling these days.... for REAL, not a glib answer! I am showing signs of
> the treatment working.
>
> Ragdoll Billie on the Road to Remission
> http://andlifegoesononedayonestepatatime.blogspot.com/
> http://www.caringbridge.org/visit/billiewages
>
> Striving for a world without Myasthenia Gravis
> http://www.myasthenia.org/amg_whatismg.cfm
>
>
> "krom" <thekromremoveremove@hotmail.com> wrote in message
> news:fnue5p$4sp$1@aioe.org...
>> Hearing aids?..ipods?
>>
>> We are going to start calling you robo-billie!
>> :-)
>>
>> Hehe..its very awsome we live in a time with all this great technology
>> isnt it!
>>
>> KROM
>>
>>
>> "Billie" <someone@swbell.net> wrote in message
>> news:Lwtoj.9983$hI1.1615@nlpi061.nbdc.sbc.com...
>>> First, the BEST the HAPPY news ----- I had an auditory exam (did very
>>> poorly) while there, quite unexpected, got fitted for, then ordered
>>> hearing aides! Yippee! Poor Jim. That means I'm going to be able to
>>> hear what all he says in about two weeks. We were very impressed with
>>> the audiologist. She explained everything in great detail; amswered all
>>> of our questions, well, mainly Jim's questions, because I didn't know he
>>> had that in mind when we went. He had talked about doing it this *year*
>>> but I never dreamed so soon.
>>>
>>> Then the doctor appeared. Still the same nice guy he was when
>>> consulting me in the hospital. He still did not alleviate and soothe my
>>> nerves as to the posibility of Pemphegus, though.
>>> http://en.wikipedia.org/wiki/Pemphigus He just gave me more details of
>>> what he would be doing within my mouth.
>>>
>>> He saw three to four teeth he wanted the dentist to offer an opinion on,
>>> and possibly correct before he does a biopsy of my mouth.
>>>
>>> The very most fun part of the whole day was buying me an iPod! Haven't
>>> been able to stay awake long enough yet to set it up yet. ZZZZZZZ
>>>
>>>
>>> Ragdoll Billie on the Road to Remission
>>> http://andlifegoesononedayonestepatatime.blogspot.com/
>>> http://www.caringbridge.org/visit/billiewages
>>>
>>> Striving for a world without Myasthenia Gravis
>>> http://www.myasthenia.org/amg_whatismg.cfm
>>>
>>
>>
>
>
>
> --
>

On Feb 1, 5:36*am, "Billie" <some...@swbell.net> wrote:
> Jim won't leave me unattended in the living room at all any more, so I was
> looking for ways of having my *noise* after he'd go to upstairs to bed.
> I've been wanting an ipod for a while. *The hearing aids I need badly. *My
> doctors won't know what to think when I don't have to sit right under their
> noses to hear them. *That was the last thing my pain specialist said to
> me..... Yes, get you some hearing aids..... coarse I cannot afford to fly to
> Brazil every Christmas like he can either. *He's another of my sweet heart
> doctors.
>
> Just wait till the family is together, and I can hear what all is being
> said.... hehehehe..... can't wait!!! *It's been almost 20 years since my
> other ones. *She said the levels are normal, mild, moderate, deaf, and Iwas
> moderate, and understanding words was worse (didn't need a test to tell me
> that!!). *You didn't even know I couldn't hear you that well, did you!
>
> How are you doing Krom? *I think about you often. *Tell me how you're
> feeling these days.... for REAL, not a glib answer! *I am showing signs of
> the treatment working.
>
> Ragdoll Billie on the Road to Remissionhttp://andlifegoesononedayonestepatatime.blogspot.com/http://www.caringbridge.org/visit/billiewages
>
> Striving for a world without Myasthenia Gravishttp://www.myasthenia.org/amg_whatismg.cfm
>
> "krom" <thekromremoverem...@hotmail.com> wrote in message
>
> news:fnue5p$4sp$1@aioe.org...
>
>
>
>
>
> > Hearing aids?..ipods?
>
> > We are going to start calling you robo-billie!
> > :-)
>
> > Hehe..its very awsome we live in a time with all this great technology
> > isnt it!
>
> > KROM
>
> > "Billie" <some...@swbell.net> wrote in message
> >news:Lwtoj.9983$hI1.1615@nlpi061.nbdc.sbc.com.. .
> >> First, the BEST the HAPPY news ----- I had an auditory exam (did very
> >> poorly) while there, quite unexpected, got fitted for, then ordered
> >> hearing aides! *Yippee! *Poor Jim. *That means I'm going to be able to
> >> hear what all he says in about two weeks. *We were very impressed with
> >> the audiologist. She explained everything in great detail; amswered all
> >> of our questions, well, mainly Jim's questions, because I didn't know he
> >> had that in mind when we went. *He had talked about doing it this *year*
> >> but I never dreamed so soon.
>
> >> Then the doctor appeared. *Still the same nice guy he was when consulting
> >> me in the hospital. *He still did not alleviate and soothe my nerves as
> >> to the posibility of Pemphegus, though.
> >>http://en.wikipedia.org/wiki/Pemphigus*He just gave me more details of
> >> what he would be doing within my mouth.
>
> >> He saw three to four teeth he wanted the dentist to offer an opinion on,
> >> and possibly correct before he does a biopsy of my mouth.
>
> >> The very most fun part of the whole day was buying me an iPod! *Haven't
> >> been able to stay awake long enough yet to set it up yet. *ZZZZZZZ
>
> >> Ragdoll Billie on the Road to Remission
> >>http://andlifegoesononedayonestepatatime.blogspot.com/
> >>http://www.caringbridge.org/visit/billiewages
>
> >> Striving for a world without Myasthenia Gravis
> >>http://www.myasthenia.org/amg_whatismg.cfm
>
> --- Hide quoted text -
>
> - Show quoted text -

Hi Billie! My dad got hearing aids a while ago. He can hear lower
pitched voices (men) just fine. He has a problem with higher pitched
sounds (women). I asked him why he wanted hearing aids? D

My best to you, Billie.

John C.

On Jan 31, 4:15*pm, "Billie" <some...@swbell.net> wrote:
> First, the BEST the HAPPY news ----- I had an auditory exam (did very
> poorly) while there, quite unexpected, got fitted for, then ordered hearing
> aides! *Yippee! *Poor Jim. *That means I'm going to be able to hear what all
> he says in about two weeks. *We were very impressed with the audiologist..
> She explained everything in great detail; amswered all of our questions,
> well, mainly Jim's questions, because I didn't know he had that in mind when
> we went. *He had talked about doing it this *year* but I never dreamed so
> soon.
>
> Then the doctor appeared. *Still the same nice guy he was when consulting me
> in the hospital. *He still did not alleviate and soothe my nerves as to the
> posibility of Pemphegus, though.http://en.wikipedia.org/wiki/Pemphigus*He just gave me more details of what
> he would be doing within my mouth.
>
> *He saw three to four teeth he wanted the dentist to offer an opinion on,
> and possibly correct before he does a biopsy of my mouth.
>
> The very most fun part of the whole day was buying me an iPod! *Haven't been
> able to stay awake long enough yet to set it up yet. *ZZZZZZZ
>
> Ragdoll Billie on the Road to Remissionhttp://andlifegoesononedayonestepatatime.blogspot.com/http://www.caringbridge.org/visit/billiewages
>
> Striving for a world without Myasthenia Gravishttp://www.myasthenia.org/amg_whatismg.cfm

Yea on the hearing aides and the I-pod, Billie! So what kinds of
music are you going to listen to on that i-pod?

Thanks for the link explaining Pemphigus. Jeez, that doesn't sound
like any fun at all. I hope you can get treated soon!

Best regards,
Michelle C., T2
diet & exercise

"Michelle C." <bookbug2005@gmail.com> wrote in message
news:9406668a-0ec8-4084-b22b-757812c0124a@v46g2000hsv.googlegroups.com...
Yea on the hearing aides and the I-pod, Billie! So what kinds of
music are you going to listen to on that i-pod?

Thanks for the link explaining Pemphigus. Jeez, that doesn't sound
like any fun at all. I hope you can get treated soon!

Best regards,
Michelle C., T2
diet & exercise


No country, I can tell you that for sure. I had saved a lot of Will's
threads of music before I gave my computer a drink of Crystal Light. He had
brought up a lot of good music there. Then I've got my Christian favorites,
one of whom my daughter sent to me just yesterday. If I keep on feeling
better, then I'll put some of my CDs on there. Right now I'm having trouble
putting iTunes on my computer. I'm doing a cold reboot, and making sure it
is nice and clean, then retrying. I have a *bad* habit of having too much
open on my computer at one time. Sometimes, "I bad."

I do not have the Pemphigus dx yet. It *has* have the biopsy, and it is a
very nasty disease, one you wouldn't even wish on your enemy. It has me so
nervous that I've not even done much research on it, and I told Dr. Naidu
that the other day. Very unlike me. If the dx is positive, then I will,
but until then, I'd rather not waste my time & energy on it. I'll also
*try* not to borrow worry from tomorrow until it is needed. Know what I
mean? Now, I am saying *try* there..... no promises. LOL Up until
recently, I've kept these kind of feelings to myself, but I am learning to
share them.

One thing I am finding interesting is that Myasthenia and Non-Hondgkins is
being found together a lot. I'm waiting on the end results of my sister's
melanoma to find if there is any autoimmune process going on with hers. Up
until recently, it appeared as if I have been the *only* sick child between
us. Maybe not so. Also, thyroid problems are a major problem among her,
Mama, and me. Interesting.

I'm excited about the hearing aids. There are two muscles in the ears, and
the Myasthenia probably caused mine to worsen so much from where it was for
so many years. Dr. said it was nerve damage, and that fits the problem so
say the doc. Whoopee! Always something new and exciting just around the
corner!


Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

x-no-rchive: yes


Billie wrote:

> I do not have the Pemphigus dx yet. It *has* have the biopsy, and it is
> a very nasty disease, one you wouldn't even wish on your enemy. It has
> me so nervous that I've not even done much research on it, and I told
> Dr. Naidu that the other day. Very unlike me. If the dx is positive,
> then I will, but until then, I'd rather not waste my time & energy on
> it. I'll also *try* not to borrow worry from tomorrow until it is
> needed. Know what I mean? Now, I am saying *try* there..... no
> promises. LOL Up until recently, I've kept these kind of feelings to
> myself, but I am learning to share them.

Billie, I so hope that you don't add pemphigous to your batch of problems.

Great news about the hearing aids, though!

Susan

Billie wrote in message

>No country, I can tell you that for sure. I had saved a lot of
Will's
>threads of music before I gave my computer a drink of Crystal Light.
He had
>brought up a lot of good music there. Then I've got my Christian
favorites,
>one of whom my daughter sent to me just yesterday. If I keep on
feeling
>better, then I'll put some of my CDs on there. Right now I'm having
trouble
>putting iTunes on my computer. I'm doing a cold reboot, and making
sure it
>is nice and clean, then retrying. I have a *bad* habit of having too
much
>open on my computer at one time. Sometimes, "I bad."


You're a lot more computer savvy than I am, though most people are. I
hope you have great fun with the ipod Billie, and I hope you're
feeling better. Enjoy the hearing aids too.

Cheri

"Billie" <someone@swbell.net> wrote in message
news:1wJoj.10062$hI1.10036@nlpi061.nbdc.sbc.com...
>
> No country, I can tell you that for sure. I had saved a lot of Will's
> threads of music before I gave my computer a drink of Crystal Light. He
> had brought up a lot of good music there. Then I've got my Christian
> favorites, one of whom my daughter sent to me just yesterday. If I keep
> on feeling better, then I'll put some of my CDs on there.

Don't forget about podcasts -- lots of interesting stuff out there, plenty
of it free.
bj

"Susan" <nevermind@nomail.com> wrote in message
news:60h8b6F1qilo3U1@mid.individual.net...
> x-no-rchive: yes
>
>
> Billie wrote:
>
>> I do not have the Pemphigus dx yet. It *has* have the biopsy, and it is
>> a very nasty disease, one you wouldn't even wish on your enemy. It has
>> me so nervous that I've not even done much research on it, and I told Dr.
>> Naidu that the other day. Very unlike me. If the dx is positive, then I
>> will, but until then, I'd rather not waste my time & energy on it. I'll
>> also *try* not to borrow worry from tomorrow until it is needed. Know
>> what I mean? Now, I am saying *try* there..... no promises. LOL Up
>> until recently, I've kept these kind of feelings to myself, but I am
>> learning to share them.
>
> Billie, I so hope that you don't add pemphigous to your batch of problems.
>
> Great news about the hearing aids, though!
>
> Susan


You and me, too, Susan. That is why I'm just letting it lay there with
minimal knowledge until I feel it is worth extra effort. It looks probable
with those blisters and suck along with other stuff, but I want as far from
this disease as I can get. I think someone dropped a big autoimmune blanket
over the top of me. LOL

Last IVIg shows positive signs!

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

"Cheri" <gserviceatinreachdotcom> wrote in message
news5OdnaKxieU77j7anZ2dnUVZ_o2vnZ2d@softcom.net. ..
>
> Billie wrote in message
>
>>No country, I can tell you that for sure. I had saved a lot of
> Will's
>>threads of music before I gave my computer a drink of Crystal Light.
> He had
>>brought up a lot of good music there. Then I've got my Christian
> favorites,
>>one of whom my daughter sent to me just yesterday. If I keep on
> feeling
>>better, then I'll put some of my CDs on there. Right now I'm having
> trouble
>>putting iTunes on my computer. I'm doing a cold reboot, and making
> sure it
>>is nice and clean, then retrying. I have a *bad* habit of having too
> much
>>open on my computer at one time. Sometimes, "I bad."
>
>
> You're a lot more computer savvy than I am, though most people are. I
> hope you have great fun with the ipod Billie, and I hope you're
> feeling better. Enjoy the hearing aids too.
>
> Cheri
>
>


I got it working. Just had a tired little laptop was all. Now I am tired,
and my eyes have weakened and I cannot read all that tiny print. I've
emailed Debbie to see if she'll come and help me finish up. After all,
she's got a 13 y/o who's had one and lost it already, so she's one of those
experienced mom of teenagers.

Cheri, getting good positive response finally from the IVIg treatments.
What we are noticing is a quick bouce back after something dropping me.
Quite unlike anything previously. The thing to remember is that this is
like putting a bandaid on a cut. It is not permanent. Lasting how long? I
have no idea. We'll see as we go along. Think it gets you over the hump,
then the regular meds take over. I'm encouraged..... right now. Scared to
get too much so..... know what I mean?

I'm going to have some pix of my OH bunch pretty soon. Maybe even tonight.
Depends on how I bounce back from the intensity of playing with the iPod.
*s*


Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

x-no-archive: yes

Billie wrote:

> You and me, too, Susan. That is why I'm just letting it lay there with
> minimal knowledge until I feel it is worth extra effort. It looks
> probable with those blisters and suck along with other stuff, but I want
> as far from this disease as I can get. I think someone dropped a big
> autoimmune blanket over the top of me. LOL

I'll keep my fingers, toes and even my eyes crossed for you to get a
negative on the big P.

>
> Last IVIg shows positive signs!

That's GREAT news!

Is there even the teeniest chance of them trying a looooooong,
slooooooow wean from Prednisone, and maybe gradually switching you over
to Cortef, which is cortisone, but not so long acting as Pred?

It might help your immune function become more competent and less awry,
if managed carefully.

Susan

"bj" <bjones44@bellatlantic.net> wrote in message
news:i5Moj.95$M71.6@trnddc08...
> "Billie" <someone@swbell.net> wrote in message
> news:1wJoj.10062$hI1.10036@nlpi061.nbdc.sbc.com...
>>
>> No country, I can tell you that for sure. I had saved a lot of Will's
>> threads of music before I gave my computer a drink of Crystal Light. He
>> had brought up a lot of good music there. Then I've got my Christian
>> favorites, one of whom my daughter sent to me just yesterday. If I keep
>> on feeling better, then I'll put some of my CDs on there.
>
> Don't forget about podcasts -- lots of interesting stuff out there, plenty
> of it free.
> bj
>
>


BJ

I got iTunes installed. My poor smaller-than-I-normally-have laptop did
better after it got refreshed. Being a graphic designer, I tend to forget,
and just keep adding one thing after another. Then I forget, go back to
before, adding, adding..... after 17 years of photo graphic design, you'd
think I'd have learned by now, but with most artists, time stands still
while they are working, and I am so HAPPY to be able to work again that I
could care less about time.

I have a Podcast tab, but do not really *know* about podcasts because I've
never had them available before, plus couldn't have understood them anyway.
Could you enlighten me? Probably off-list? Everyone doesn't want to hear
that explanation. Frank doesn't want me selling myself as *old* and I'm
not, but the MRI that has lesions in the white matter, that has affect on
the gray matter has affect on my cognitive function...... hahaha Old? Not
on your life, but some physical limitations makes me *look* that way
sometimes..... you hear that Frank????


Ragdoll Billie on the Road to Remission
bh-wages at swbell dot net
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

"Susan" <nevermind@nomail.com> wrote in message
news:60hnqqF1qqrdqU1@mid.individual.net...
> x-no-archive: yes
>
> Billie wrote:
>
>> You and me, too, Susan. That is why I'm just letting it lay there with
>> minimal knowledge until I feel it is worth extra effort. It looks
>> probable with those blisters and suck along with other stuff, but I want
>> as far from this disease as I can get. I think someone dropped a big
>> autoimmune blanket over the top of me. LOL
>
> I'll keep my fingers, toes and even my eyes crossed for you to get a
> negative on the big P.
>
>>
>> Last IVIg shows positive signs!
>
> That's GREAT news!
>
> Is there even the teeniest chance of them trying a looooooong, slooooooow
> wean from Prednisone, and maybe gradually switching you over to Cortef,
> which is cortisone, but not so long acting as Pred?
>
> It might help your immune function become more competent and less awry, if
> managed carefully.
>
> Susan



He said I am not stable enough yet to start the prednisone reduction. But
with MG, there are other things they switch us to, and right this moment,
without going and looking it all up - you know this lady's memory - I do not
recall all the names. They will overlap I believe. Actually, the way he
did the IVIg at first was the more progressive, proactive way of in 3 days
rather than 5. I showed I could not handle that, and he is having to work
me to the 5 days. The US. is ahead of those in the UK I read with at the
forum. There, they are limited, almost within *laws* of how they can do
procedures. I've learned a lot by being there with them. I'm also with a
US group, and I am learning the US docs will more likely *go forward* than
not. Wanting to get me off prednisone, my doc was doing all he could to
push me - my *own* surmise, nothing he said, except his overall attitude,
etc. But, when I asked about the other drug(s) he said I was not stable
enough, and I have to be VERY careful not to get myself where I might go
into crisis, which I almost did last weekend, after having a really good
week. So, what do I do? Have headaches, and keep the MG more stable, or be
comfortable and risk going into crisis more easily? You see my dilemma? The
chat room topic a week ago was "tubeless intubation." Encouraging, and I
should have been there, but I had grown lax in my thinking of myself at
risk. It is soooo easy to do after an ease spell.

This is all so complicated Susan. I get to the point that I think I
understand it fairly well, then, boom! Even my voice is affected by MG.
Whodathot? The two muscles in the ears? Bet the audiologist has fun
adjusting them, and that she can do so from the computer!

How are you doing these days, and what is the latest? I've been noticing
your not being around as much, or is it I who have not been here enough?


Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

x-no-archive: yes


Billie wrote:

> He said I am not stable enough yet to start the prednisone reduction.

I wonder, though, if he substituted stress doses of hydrocortisone, and
regular ones, if you might do better weaning without severe adrenal
insufficiency? It's easier to wean off of Cortef.

> But with MG, there are other things they switch us to, and right this
> moment, without going and looking it all up - you know this lady's
> memory - I do not recall all the names. They will overlap I believe.
> Actually, the way he did the IVIg at first was the more progressive,
> proactive way of in 3 days rather than 5. I showed I could not handle
> that, and he is having to work me to the 5 days. The US. is ahead of
> those in the UK I read with at the forum. There, they are limited,
> almost within *laws* of how they can do procedures. I've learned a lot
> by being there with them. I'm also with a US group, and I am learning
> the US docs will more likely *go forward* than not.

Yes, I've learned from UK and Canadian Cushing's patients how rigid and
limiting the protocols can be there. They are here, too, not by NHS,
but by stupidity, but not as restricted.

Wanting to get me
> off prednisone, my doc was doing all he could to push me - my *own*
> surmise, nothing he said, except his overall attitude, etc. But, when I
> asked about the other drug(s) he said I was not stable enough, and I
> have to be VERY careful not to get myself where I might go into crisis,
> which I almost did last weekend, after having a really good week. So,
> what do I do? Have headaches, and keep the MG more stable, or be
> comfortable and risk going into crisis more easily? You see my dilemma?

Yes, and headaches, weakness, nausea back spasms, are often part of a
Pred wean. Using Cortef as a sort of "methadone" and then weaning off
that can help a lot, and you can stress dose when you get very insufficient.

> The chat room topic a week ago was "tubeless intubation." Encouraging,
> and I should have been there, but I had grown lax in my thinking of
> myself at risk. It is soooo easy to do after an ease spell.\

Of course, and who wants to think about all the most unpleasant
possibilities ahead of time??

>
> This is all so complicated Susan. I get to the point that I think I
> understand it fairly well, then, boom! Even my voice is affected by MG.
> Whodathot? The two muscles in the ears? Bet the audiologist has fun
> adjusting them, and that she can do so from the computer!

Sounds like wierd science! :-)

>
> How are you doing these days, and what is the latest? I've been
> noticing your not being around as much, or is it I who have not been
> here enough?

Nah, things aren't so hot around here, still testing a lot, feeling
mostly adrenally insufficient, but nothing I can't handle. Mostly,
lately, my mom is bad, so off to FL tomorrow to see her in the hospital.
Very severe chemo toxicity. Thanks for asking, Billie.

Susan

"Billie" <someone@swbell.net> a écrit dans le message de news:
oUNoj.1706$xq2.327@newssvr21.news.prodigy.net...
> "bj" <bjones44@bellatlantic.net> wrote in message
> news:i5Moj.95$M71.6@trnddc08...
>> "Billie" <someone@swbell.net> wrote in message
>> news:1wJoj.10062$hI1.10036@nlpi061.nbdc.sbc.com...
>>>
>>> No country, I can tell you that for sure. I had saved a lot of Will's
>>> threads of music before I gave my computer a drink of Crystal Light. He
>>> had brought up a lot of good music there. Then I've got my Christian
>>> favorites, one of whom my daughter sent to me just yesterday. If I keep
>>> on feeling better, then I'll put some of my CDs on there.
>>
>> Don't forget about podcasts -- lots of interesting stuff out there,
>> plenty of it free.
>> bj
>>
>>
>
>
> BJ
>
> I got iTunes installed. My poor smaller-than-I-normally-have laptop did
> better after it got refreshed. Being a graphic designer, I tend to
> forget, and just keep adding one thing after another. Then I forget, go
> back to before, adding, adding..... after 17 years of photo graphic
> design, you'd think I'd have learned by now, but with most artists, time
> stands still while they are working, and I am so HAPPY to be able to work
> again that I could care less about time.
>
> I have a Podcast tab, but do not really *know* about podcasts because I've
> never had them available before, plus couldn't have understood them
> anyway. Could you enlighten me? Probably off-list? Everyone doesn't want
> to hear that explanation. Frank doesn't want me selling myself as *old*
> and I'm not, but the MRI that has lesions in the white matter, that has
> affect on the gray matter has affect on my cognitive function...... hahaha
> Old? Not on your life, but some physical limitations makes me *look* that
> way sometimes..... you hear that Frank????


I hear you, Billie. You can still avoid using old if you
have objections to trying to sell yourself as a teenager ...

Try using "mature", "experienced" (I see that it fits admirably,
from reading this post), you have lots of life in front of you -
use it well so that ppl will say, (one day), "Billie was a GREAT
addition to the human race!"

After all, my father is alive and kicking at 88 (this 25 Feb)
and he has had to survive losing his wife (and my mother)
some 13 years ago, survive the trauma of a horrible war (WW2),
spent over 50 years of me protesting his use of tobacco ...
("You'll never grow old, Dad ...")
On the journey, he got 5 children, 7 grandchildren and 2 great
grandchildren... and countless pets (maybe 6 ... dogs).

In alt.support.diabetes on Fri, 01 Feb 2008 23:26:12 GMT in Msg.#
<oUNoj.1706$xq2.327@newssvr21.news.prodigy.net>, "Billie"
<someone@swbell.net> wrote:

> I have a Podcast tab, but do not really *know* about podcasts because I've
> never had them available before, plus couldn't have understood them anyway.
> Could you enlighten me? Probably off-list? Everyone doesn't want to hear
> that explanation. Frank doesn't want me selling myself as *old* and I'm
> not, but the MRI that has lesions in the white matter, that has affect on
> the gray matter has affect on my cognitive function...... hahaha Old? Not
> on your life, but some physical limitations makes me *look* that way
> sometimes..... you hear that Frank????

Knowing about podcasts, webcasts, webisodes, audio webzines, etc. really has
nothing to do with age anyway. It just has to do with whether you've been
exposed to them before!!

--
DonnaB shallotpeel, T2 since June 06, USA

"...I really hope that Jacob Young and Colton Scott are sleeping together
off-screen, because it sure looks like they want to be on-screen." - Turner
Arrington, RATSaGH

In alt.support.diabetes on Fri, 01 Feb 2008 23:14:01 GMT in Msg.#
<ZINoj.1705$xq2.1346@newssvr21.news.prodigy.net> , "Billie"
<someone@swbell.net> wrote:

> Cheri, getting good positive response finally from the IVIg treatments.
> What we are noticing is a quick bouce back after something dropping me.
> Quite unlike anything previously. The thing to remember is that this is
> like putting a bandaid on a cut. It is not permanent. Lasting how long? I
> have no idea. We'll see as we go along. Think it gets you over the hump,
> then the regular meds take over. I'm encouraged..... right now. Scared to
> get too much so..... know what I mean?

This is such great news!! Fingers & toes crossed that it sticks around for a
good long while.

--
DonnaB shallotpeel, T2 since June 06, USA

"... [Lynn] Herring's real-life husband, Wayne Northrop. Once the heroic ...
Roman Brady [on DOOL] now PC villain Rex Stanton - ... a hilarious, wickedly
inventive performer ... most assuredly bound for Emmy recognition." - MLogan
on PC 8/97

In alt.support.diabetes on Fri, 01 Feb 2008 19:56:30 -0500 in Msg.#
<60htdvF1r214oU1@mid.individual.net>, Susan <nevermind@nomail.com> wrote:

> Nah, things aren't so hot around here, still testing a lot, feeling
> mostly adrenally insufficient, but nothing I can't handle. Mostly,
> lately, my mom is bad, so off to FL tomorrow to see her in the hospital.
> Very severe chemo toxicity. Thanks for asking, Billie.

I'm sorry to hear that your mother is having a rough time with the chemo.
How long does she need to keep taking this cycle of chemo?

--
DonnaB shallotpeel, T2 since June 06, USA

"A *priest* - what've you been doing all morning with a priest? Confessing
your sins? Debating theology?" - Chris "Talking about you." - Eve "Oh,
speaking of the devil." - Chris, PC May 2001

On Fri, 01 Feb 2008 23:26:12 GMT, "Billie" <someone@swbell.net> wrote:

>I got iTunes installed. My poor smaller-than-I-normally-have laptop did
>better after it got refreshed. Being a graphic designer, I tend to forget,
>and just keep adding one thing after another.

Hah! My eldest has that problem. Art is Too Big!!

>I have a Podcast tab, but do not really *know* about podcasts because I've
>never had them available before, plus couldn't have understood them anyway.

Well, I don't use iTunes, so I don't know how you get at them through
there - but podcasts are just like blogs (often) but in spoken form.
In fact, with your new hearing aid, you might like them better than
blogs! There are a number of diabetes-focused ones; I get the DLIFE
one, which has had some good articles, and Dr Rubin also; he's the guy
who wrote the Diabetes for Dummies books in the US. My favourite is
one called Motivation to Move by a guy called Scott Smith, which is
very upbeat - you're not going to get anything out of his exercise
themes, but you might enjoy his attitude towards life. Then the BBC
radio service offers a lot of my favourite shows as podcasts... I have
a 6Gb MP3 player, and 4Gb of it is podcasts!

Nicky.
T2 dx 05/04 + underactive thyroid
D&E, 100ug thyroxine
Last A1c 5.6% BMI 25

"DonnaB shallotpeel" <shallotpeel@comcast.net> wrote in message
news:hpa8q3l8msih17056antie1nutrms7nj8p@4ax.com...
> In alt.support.diabetes on Fri, 01 Feb 2008 23:14:01 GMT in Msg.#
> <ZINoj.1705$xq2.1346@newssvr21.news.prodigy.net> , "Billie"
> <someone@swbell.net> wrote:
>
>> Cheri, getting good positive response finally from the IVIg treatments.
>> What we are noticing is a quick bouce back after something dropping me.
>> Quite unlike anything previously. The thing to remember is that this is
>> like putting a bandaid on a cut. It is not permanent. Lasting how long?
>> I
>> have no idea. We'll see as we go along. Think it gets you over the
>> hump,
>> then the regular meds take over. I'm encouraged..... right now. Scared
>> to
>> get too much so..... know what I mean?
>
> This is such great news!! Fingers & toes crossed that it sticks around for
> a
> good long while.
>
> --
> DonnaB shallotpeel, T2 since June 06, USA
>
> "... [Lynn] Herring's real-life husband, Wayne Northrop. Once the heroic
> ...
> Roman Brady [on DOOL] now PC villain Rex Stanton - ... a hilarious,
> wickedly
> inventive performer ... most assuredly bound for Emmy recognition." -
> MLogan
> on PC 8/97


Thanks, Donna. Me, too. Appreciate your comments.

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

x-no-archive: yes

DonnaB shallotpeel wrote:

> I'm sorry to hear that your mother is having a rough time with the chemo.
> How long does she need to keep taking this cycle of chemo?
>

She's had all the chemo she needs (IMO, she never should have had it,
and a surgeon agrees now), but the effects are just devastating. The
oncologist really sold it to her as "mild" in my presence. My mother is
now telling everyone she's not diabetic because the idiot nutritionist
at the cancer center told her to test only at two hours; my niece the
doctor went off on her the other night about not testing at 1 hour.

If *I* only tested at two hours, I wouldn't get DM numbers, mostly,
either! So they've been giving my mother sugary soda, juice, Jello.

Meanwhile, her bg shot up to a steady 160 on IV nutrition, so the
hospital is listening to my niece for now.

Thanks.

Susan

Susan wrote in message <60jfa9F1r6r0uU1@mid.individual.net>...

>If *I* only tested at two hours, I wouldn't get DM numbers, mostly,
>either! So they've been giving my mother sugary soda, juice, Jello.
>
>Meanwhile, her bg shot up to a steady 160 on IV nutrition, so the
>hospital is listening to my niece for now.
>
>Thanks.
>
>Susan

Have a safe trip Susan, and I wish your mother well.

Cheri

On Feb 1, 10:26*am, "Billie" <some...@swbell.net> wrote:
> "Michelle C." <bookbug2...@gmail.com> wrote in message
>
> news:9406668a-0ec8-4084-b22b-757812c0124a@v46g2000hsv.googlegroups.com...
> Yea on the hearing aides and the I-pod, Billie! *So what kinds of
> music are you going to listen to on that i-pod?
>
> Thanks for the link explaining Pemphigus. *Jeez, that doesn't sound
> like any fun at all. *I hope you can get treated soon!
>
> Best regards,
> Michelle C., T2
> diet & exercise
>
> No country, I can tell you that for sure. *I had saved a lot of Will's
> threads of music before I gave my computer a drink of Crystal Light. *Hehad
> brought up a lot of good music there. *Then I've got my Christian favorites,
> one of whom my daughter sent to me just yesterday. *If I keep on feeling
> better, then I'll put some of my CDs on there. *Right now I'm having trouble
> putting iTunes on my computer. *I'm doing a cold reboot, and making sureit
> is nice and clean, then retrying. *I have a *bad* habit of having too much
> open on my computer at one time. *Sometimes, "I bad." *
>
> I do not have the Pemphigus dx yet. *It *has* have the biopsy, and it isa
> very nasty disease, one you wouldn't even wish on your enemy. *It has meso
> nervous that I've not even done much research on it, and I told Dr. Naidu
> that the other day. *Very unlike me. *If the dx is positive, then I will,
> but until then, I'd rather not waste my time & energy on it. *I'll also
> *try* not to borrow worry from tomorrow until it is needed. *Know what I
> mean? *Now, I am saying *try* there..... no promises. *LOL *Up until
> recently, I've kept these kind of feelings to myself, but I am learning to
> share them.
>
> One thing I am finding interesting is that Myasthenia and Non-Hondgkins is
> being found together a lot. *I'm waiting on the end results of my sister's
> melanoma to find if there is any autoimmune process going on with hers. *Up
> until recently, it appeared as if I have been the *only* sick child between
> us. *Maybe not so. *Also, thyroid problems are a major problem among her,
> Mama, and me. *Interesting.
>
> I'm excited about the hearing aids. *There are two muscles in the ears, and
> the Myasthenia probably caused mine to worsen so much from where it was for
> so many years. *Dr. said it was nerve damage, and that fits the problem so
> say the doc. *Whoopee! *Always something new and exciting just around the
> corner!
>
> Ragdoll Billie on the Road to Remissionhttp://andlifegoesononedayonestepatatime.blogspot.com/http://www.caringbridge.org/visit/billiewages
>
> Striving for a world without Myasthenia Gravishttp://www.myasthenia.org/amg_whatismg.cfm

Hi Billie,

I don't blame you for not researching a diagnosis you may not even
have. I'm keeping my fingers crossed that you don't! You already
have enough to contend with by anyone's standards.

HA! Had to laugh about your remark "no country" for your I-pod. I
used to feel that way too, although I'm finding a few songs I enjoy--
mostly those that are funny. Of course, I don't like very many sad
songs in any genre. :-)

I do the same thing with my computer--have too much stuff going at the
same time. I finally installed more RAM and that helped, but there
are times I can overwhelm it. Actually, I think it's my slow, dial-up
connection that causes it to dither sometimes.

Good luck with the I-tunes installation!
Michelle C., T2
diet & exercise

x-no-archive: yes


>
> Have a safe trip Susan, and I wish your mother well.
>
> Cheri
>
>

Thanks, Cheri. It's no lie when I tell