questions

[Guest guest]

I second that.

T

[Guest guest]

She didn't say wrong. She said shitty. So the next question is, does she

mean shitty in a nice way or a shitty way?

Questions

So....

**There is a wrong way to ask a question.

True?

>

> >Im curious, how old is Steve?

> >T

> >

> Hi T,

>

> That's a shitty way to ask a question. How about: " How old are you,

> Steve?

>

> Love, Margaret

[Guest guest]

I have had my son's films sent twice to Dr. Dobyn's, and have not yet

heard back from him. However, looking at his MRI reports, he has PMG

in both frontal lobes as well as the left parieto-occipital region

and the temporal cortices bilaterally. Not sure what this means, if

anything, but just thought I would let you know in response to your

question.

Mom to Cameron (3 yr), Braden (15 mo), & Ethan (15 mo) with PMG,

chromosome 13 deletion, retinoblastoma, g-tube, developmental delays

> Hello. I have been a silent observer of this group for several

> months now. Last fall we sent our 9 year old daughter's MRIs to

Dr.

> Dobyns and finally received a response back this morning. I was

> wondering if anyone has a child with the same sort of PMG. Dr.

> Dobyns says my daughter has " polymicrogyria in a parasagittal

> distribution in the frontal lobes. This is quite rare. " He asked

> for more information which I just emailed to him. I looked for

this

> kind of PMG on the Internet, but found nothing relating to the

> frontal lobes. I'd love to visit with anyone who is willing.

[Guest guest]

Hello my name is my son Peyton is 3 he also drools alot but is on a

medication called Scopolamine or Transderm Scop it is a patch that we put behind

his ear it does not stop it all but is helpfull.hope this helps you.and as

far as seizures go they are very hard to tell we think he has had them but are

not sure.

[Guest guest]

Hi ,

I was going through the messages and thought I may be able to answer a few of

your questions based on our experiences.

> What exactly is a saliva gram, we've

> never heard of this. Who should I speak to, or where should I go to

> have one performed on .

This site can explain in detail what the salivagram does and how it is

performed:

http://www.childrenshospital.org/az/Site1540/mainpageS1540P0.html

Our GI doctor ordered the test for , although I am sure the neurologist

could also order it.

Also, what about all these drugs that help stop the

> drooling? My husband says that he once read an article that said

> these drugs can have some bad side effect, like stopping the

> production of saliva all together. Has anyone ever heard of this?

> None of our doctors have ever mentioned these types of tests and

> treatments to us.

All drugs can have undesirable side effects. I think the best thing to do is

discuss the pros/cons with the specialist involved, also talk to the pharmacist

(they are often more knowledgeable as to the specifics of a drug) and then do

your own research. It is important to see if the benefits of the drug outweigh

the potential side effects. For , we haven't seen any decrease in the

drooling from either Robinul or Levsin. In fact, they have increased the

secretions! All of the other drugs we have looked at for drooling are

contraindicated in persons who are suseptible to seizures as they lower the

seizure threshold. This is not a risk we are willing to take. Our doctor has

also mentioned botox injections, but we are not comfortable with that route

either. Right now we are waiting to see if the naturopathic doctor will have a

suggestion for us before going any further.

As for the Dr. suggesting the salivagram, our doctor didn't bring it up either.

It was our sons OT who became concerned. Often times I think it is the

therapists who are most knowledgeable about what avenues need to be explored as

they see our children many hours per week and the specialists only see them

every few months or so for 30 minutes. The GI dr. totally agreed with the OT,

but he never realized the severity of the drooling as he had only spent limited

amounts of time with .

We know that can here, because he reacts to all kinds

> of sounds, but sometimes it's as if he's not sure where the sound is

> coming from. Has anyone else experienced this with there child?

YES! Our son had difficulty localizing sounds. Turns out he has a moderate

hearing loss in his right ear, but normal hearing in the left ear. This causes

the localization problems that you described. Booth testing made us suspicious

of the loss, but a sedated ABR confirmed it. What test did have done?

What did it show?

> I also wanted to let everyone know that has had many, many

> blood tests in the past two years. Within these tests the doctors

> have found many enzymes that were " off " (either lower or higher than

> normal). Mainly his AST & ALT levels have been slightly, but

> consistently elevated. They have definately ruled out liver failure,

> but do not have an explanation for these elevated levels.

Just a thought.....there is a woman who is phenomenal when it comes to dealing

with blood work and levels that are out of whack in special needs kids. She is

a nutritionist that I heard speak here in Atlanta.....she blew me away with her

knowledge of how these things impact our kids. Her name is Dorfman. If

you google her you will find all kinds of info on her. She is out of

Washington? I believe, but she does most of her work via phone consults and

ordering tests for out of town patients. I know several people here in Atlanta

who have used her with great results. You may want to consult with her and see

if she has any ideas besides eliminating beef and dairy.

>

> In the meantime, until we get a clearer picture of what is going on,

> we have stopped driving ourselves crazy and are enjoying every

> minute with , instead of constantly worrying.

Good idea! Enjoy that precious boy. And know, that even though I read that you

have a diagnosis from his MRI, that diagnosis doesn't dictate 's future.

Every child is different. We always here that Dr.'s are shocked to see and

his level of functioning....according to his MRI he shouldn't be doing 1/2 of

what he does!

All the best,

Krista

mom to , 3, CBPS

[Guest guest]

Hi Krista,

Thank you for all the information and advice you gave. It has really helped me,

finding this group, and reading all the posts. There were days where I felt

like we were all alone in this world with no one who understood what we were

experiencing, but now I know that we are not alone, in fact, we are far from it,

so thank you for sharing and for caring.

My family had a hard time accepting that there was something " wrong " with

because they have never dealt with a situation like ours before. Now don't get

me wrong, they are all supportive,or at least try to be, but I can see it in

there eyes, that sadness, even though they try to hide it.

My parents have come to accept(in a way) that 's future will be different

than his cousins' futures. My mother-in-law, on the other hand, thinks that

this will all pass, and will wake up one morning, talking and running

around. This is her first grandchild, and she loves him dearly, and though I

am a religious person, and I pray to God every night to give us all strength

every day, especially , she wants us to take to every church, which

she has heard has made miricales happen, so that can become a miracle

child. I do have faith and I do belive that miracles happen, but I don't

believe that I have to take my son halfway across the world to prove that. The

worst part is that she's constantly telling me what I should and shouldn't do

for , like what doctors we should go see, and how to do things with him,

and how to feed him, and how to dress him, etc.,etc. Iknow she's trying to help,

but she needs to back off, because first of all we've been

to every specialist that exists in N.Y., and second, she doesn't listen to us

or the doctors( yes she's come with us to many doctors visits). She thinks that

one of these days we're going to find a doctor who's going to tell us that

is " normal " or that he will give us a magic pill that will make

" all better " . She thinks I sit around on my tush all day long, doing nothing to

help my son. I have done so much research on so many different disorders and

syndromes, and have learned so much that doctors ask me if I'm in the medical

field(to which I respond " no, I'm just a Mother! " ).

Anyway, I'm sorry for my rambling, I just needed to vent. Belive me, though, I

could go on forever about other things, too, but I'll stop driving you crazy for

now. Hope you and are doing wonderfully, our blessings are with you

always.

Mother to , 2, pmg, pvl

n1 wrote:

Hi ,

I was going through the messages and thought I may be able to answer a few of

your questions based on our experiences.

> What exactly is a saliva gram, we've

> never heard of this. Who should I speak to, or where should I go to

> have one performed on .

This site can explain in detail what the salivagram does and how it is

performed:

http://www.childrenshospital.org/az/Site1540/mainpageS1540P0.html

Our GI doctor ordered the test for , although I am sure the neurologist

could also order it.

Also, what about all these drugs that help stop the

> drooling? My husband says that he once read an article that said

> these drugs can have some bad side effect, like stopping the

> production of saliva all together. Has anyone ever heard of this?

> None of our doctors have ever mentioned these types of tests and

> treatments to us.

All drugs can have undesirable side effects. I think the best thing to do is

discuss the pros/cons with the specialist involved, also talk to the pharmacist

(they are often more knowledgeable as to the specifics of a drug) and then do

your own research. It is important to see if the benefits of the drug outweigh

the potential side effects. For , we haven't seen any decrease in the

drooling from either Robinul or Levsin. In fact, they have increased the

secretions! All of the other drugs we have looked at for drooling are

contraindicated in persons who are suseptible to seizures as they lower the

seizure threshold. This is not a risk we are willing to take. Our doctor has

also mentioned botox injections, but we are not comfortable with that route

either. Right now we are waiting to see if the naturopathic doctor will have a

suggestion for us before going any further.

As for the Dr. suggesting the salivagram, our doctor didn't bring it up either.

It was our sons OT who became concerned. Often times I think it is the

therapists who are most knowledgeable about what avenues need to be explored as

they see our children many hours per week and the specialists only see them

every few months or so for 30 minutes. The GI dr. totally agreed with the OT,

but he never realized the severity of the drooling as he had only spent limited

amounts of time with .

We know that can here, because he reacts to all kinds

> of sounds, but sometimes it's as if he's not sure where the sound is

> coming from. Has anyone else experienced this with there child?

YES! Our son had difficulty localizing sounds. Turns out he has a moderate

hearing loss in his right ear, but normal hearing in the left ear. This causes

the localization problems that you described. Booth testing made us suspicious

of the loss, but a sedated ABR confirmed it. What test did have done?

What did it show?

> I also wanted to let everyone know that has had many, many

> blood tests in the past two years. Within these tests the doctors

> have found many enzymes that were " off " (either lower or higher than

> normal). Mainly his AST & ALT levels have been slightly, but

> consistently elevated. They have definately ruled out liver failure,

> but do not have an explanation for these elevated levels.

Just a thought.....there is a woman who is phenomenal when it comes to dealing

with blood work and levels that are out of whack in special needs kids. She is

a nutritionist that I heard speak here in Atlanta.....she blew me away with her

knowledge of how these things impact our kids. Her name is Dorfman. If

you google her you will find all kinds of info on her. She is out of

Washington? I believe, but she does most of her work via phone consults and

ordering tests for out of town patients. I know several people here in Atlanta

who have used her with great results. You may want to consult with her and see

if she has any ideas besides eliminating beef and dairy.

>

> In the meantime, until we get a clearer picture of what is going on,

> we have stopped driving ourselves crazy and are enjoying every

> minute with , instead of constantly worrying.

Good idea! Enjoy that precious boy. And know, that even though I read that you

have a diagnosis from his MRI, that diagnosis doesn't dictate 's future.

Every child is different. We always here that Dr.'s are shocked to see and

his level of functioning....according to his MRI he shouldn't be doing 1/2 of

what he does!

All the best,

Krista

mom to , 3, CBPS

[Guest guest]

,

Some people have a hard time changing their mindset and accepting things the

way they are. If the world was made up with everyone being the same, it

would be a boring place to live. is his own person and has much to

offer this world. I pray that you mother in law will come to a point in her

life that she can see this and can love for who he is.

Blessings,

Donna (mom to Trevor, 9 1/2 yrs old moderate PMG and BPNH, seizures, Septo

Optic Dysplasia syndrome, allergies, asthma, Pdd-nos)

St. 's, GA USA

Re: Re: Questions

> Hi Krista,

>

> Thank you for all the information and advice you gave. It has really

> helped me, finding this group, and reading all the posts. There were days

> where I felt like we were all alone in this world with no one who

> understood what we were experiencing, but now I know that we are not

> alone, in fact, we are far from it, so thank you for sharing and for

> caring.

> My family had a hard time accepting that there was something " wrong " with

> because they have never dealt with a situation like ours before.

> Now don't get me wrong, they are all supportive,or at least try to be, but

> I can see it in there eyes, that sadness, even though they try to hide

> it.

> My parents have come to accept(in a way) that 's future will be

> different than his cousins' futures. My mother-in-law, on the other hand,

> thinks that this will all pass, and will wake up one morning,

> talking and running around. This is her first grandchild, and she loves

> him dearly, and though I am a religious person, and I pray to God every

> night to give us all strength every day, especially , she wants us

> to take to every church, which she has heard has made miricales

> happen, so that can become a miracle child. I do have faith and I

> do belive that miracles happen, but I don't believe that I have to take my

> son halfway across the world to prove that. The worst part is that she's

> constantly telling me what I should and shouldn't do for , like what

> doctors we should go see, and how to do things with him, and how to feed

> him, and how to dress him, etc.,etc. Iknow she's trying to help, but she

> needs to back off, because first of all we've been

> to every specialist that exists in N.Y., and second, she doesn't listen to

> us or the doctors( yes she's come with us to many doctors visits). She

> thinks that one of these days we're going to find a doctor who's going to

> tell us that is " normal " or that he will give us a magic pill that

> will make " all better " . She thinks I sit around on my tush all day

> long, doing nothing to help my son. I have done so much research on so

> many different disorders and syndromes, and have learned so much that

> doctors ask me if I'm in the medical field(to which I respond " no, I'm

> just a Mother! " ).

> Anyway, I'm sorry for my rambling, I just needed to vent. Belive me,

> though, I could go on forever about other things, too, but I'll stop

> driving you crazy for now. Hope you and are doing wonderfully, our

> blessings are with you always.

>

>

> Mother to , 2, pmg, pvl

> n1 wrote:

>

> Hi ,

>

> I was going through the messages and thought I may be able to answer a few

> of your questions based on our experiences.

>

>> What exactly is a saliva gram, we've

>> never heard of this. Who should I speak to, or where should I go to

>> have one performed on .

>

>

> This site can explain in detail what the salivagram does and how it is

> performed:

>

> http://www.childrenshospital.org/az/Site1540/mainpageS1540P0.html

>

> Our GI doctor ordered the test for , although I am sure the

> neurologist could also order it.

>

> Also, what about all these drugs that help stop the

>> drooling? My husband says that he once read an article that said

>> these drugs can have some bad side effect, like stopping the

>> production of saliva all together. Has anyone ever heard of this?

>> None of our doctors have ever mentioned these types of tests and

>> treatments to us.

>

> All drugs can have undesirable side effects. I think the best thing to do

> is discuss the pros/cons with the specialist involved, also talk to the

> pharmacist (they are often more knowledgeable as to the specifics of a

> drug) and then do your own research. It is important to see if the

> benefits of the drug outweigh the potential side effects. For , we

> haven't seen any decrease in the drooling from either Robinul or Levsin.

> In fact, they have increased the secretions! All of the other drugs we

> have looked at for drooling are contraindicated in persons who are

> suseptible to seizures as they lower the seizure threshold. This is not a

> risk we are willing to take. Our doctor has also mentioned botox

> injections, but we are not comfortable with that route either. Right now

> we are waiting to see if the naturopathic doctor will have a suggestion

> for us before going any further.

>

> As for the Dr. suggesting the salivagram, our doctor didn't bring it up

> either. It was our sons OT who became concerned. Often times I think it

> is the therapists who are most knowledgeable about what avenues need to be

> explored as they see our children many hours per week and the specialists

> only see them every few months or so for 30 minutes. The GI dr. totally

> agreed with the OT, but he never realized the severity of the drooling as

> he had only spent limited amounts of time with .

>

> We know that can here, because he reacts to all kinds

>> of sounds, but sometimes it's as if he's not sure where the sound is

>> coming from. Has anyone else experienced this with there child?

> YES! Our son had difficulty localizing sounds. Turns out he has a

> moderate hearing loss in his right ear, but normal hearing in the left

> ear. This causes the localization problems that you described. Booth

> testing made us suspicious of the loss, but a sedated ABR confirmed it.

> What test did have done? What did it show?

>

>

>> I also wanted to let everyone know that has had many, many

>> blood tests in the past two years. Within these tests the doctors

>> have found many enzymes that were " off " (either lower or higher than

>> normal). Mainly his AST & ALT levels have been slightly, but

>> consistently elevated. They have definately ruled out liver failure,

>> but do not have an explanation for these elevated levels.

>

> Just a thought.....there is a woman who is phenomenal when it comes to

> dealing with blood work and levels that are out of whack in special needs

> kids. She is a nutritionist that I heard speak here in Atlanta.....she

> blew me away with her knowledge of how these things impact our kids. Her

> name is Dorfman. If you google her you will find all kinds of info

> on her. She is out of Washington? I believe, but she does most of her

> work via phone consults and ordering tests for out of town patients. I

> know several people here in Atlanta who have used her with great results.

> You may want to consult with her and see if she has any ideas besides

> eliminating beef and dairy.

>

>>

>> In the meantime, until we get a clearer picture of what is going on,

>> we have stopped driving ourselves crazy and are enjoying every

>> minute with , instead of constantly worrying.

>

> Good idea! Enjoy that precious boy. And know, that even though I read

> that you have a diagnosis from his MRI, that diagnosis doesn't dictate

> 's future. Every child is different. We always here that Dr.'s are

> shocked to see and his level of functioning....according to his MRI

> he shouldn't be doing 1/2 of what he does!

>

> All the best,

>

> Krista

>

> mom to , 3, CBPS

>

>

>

>

>

>

[Guest guest]

Debbie,

Somebody remembers that idea. I am still keeping that option open if I can't find a more convenient way to obtain raw milk. Nobody from my area on this list offered to participate in such an arrangement. For anyone who didn't see that exchange, instead of participating in a cow/goat share, I would be interested in purchasing an animal and paying a farmer a monthly fee to board it and milk it and I would be directly responsible for vet expenses. Unlike a share, I would hold the ownership documents on the animal and would be free to move it or sell it. I would work out some kind of trade to be compensated for the milk I did not use. I don't have clear ideas on how to handle the calves and would be open to suggestions. I would need to find a farmer within in hour's drive of Beaverton, OR or one who could get the milk to me (for compensation) or to a location within an hour's drive.

Coombes

Beaverton, OR

-----Original Message-----From: RawDairy [mailto:RawDairy ] On Behalf Of & Debbie ChikouskySent: Saturday, January 21, 2006 8:21 AMTo: RawDairy Subject: Re: Questions

, awhile ago we were talking about actual animal ownership to get your milk. How is that going? You have planted a few new thoughts in our heads here. Thank you for that. I really wish more people on the consumer side would start really shaking their governments cages about what they want. I suppose the problem is that most people don't know where to start. If you look at how much progress Gordon made in BC as an example it is proof that things can happen.

Debbie ChikouskyManitoba, Canadagdchik@...http://www.winnipegbeach.com/chikouskyfarms/

[Guest guest]

I'm sure you will all know " where I am " when you read the following. I hate

to send out " downers " but that's the times when we need to reach out the

most!

First, does anyone out there ,who is more knowledgeable than I ,know whether

20+ years of this DD might cause adrenal failure/hypocortisolism? This is

how I am feeling lately..........as tho it takes a supreme effort just to

keep my eyes open, to lift an arm, to hold my head up. Also feeling sort of

" drugged " mentally...confused and unable to think at all. Has anyone seen

an endocrinologist about these types of symptoms?

Second, am I the only one who is extremely (and not showing it) angry about

all that this DD has taken away from us? I feel as tho it has actually

taken my life!!! There is precious little left that I can enjoy! Do any of

you ever think: " why bother? " . No, I am not thinking of suicide...but just

sort of " giving up " ...........I have been fighting this for so long, and now

after all these years...it just seems to be getting worse! Don't think

anyone understand unless they are living with this. I try to remember when

I have been " low " before...but I think this is the absolute worst it's ever

been..........and I got sick in '81 !!!!!!!!

Does anyone relate?

Jan

[Guest guest]

Hi Jan,

So sorry to read your mail today. I've watched my Mom suffer for

many years before finally finding the right combination of things to

get better. Personally, for being in a down mood I've found that

EFT works absolute wonders. It is quick and pretty easy to learn.

If you haven't tried it yet go to www.emofree.com and download a

free manual. It's worth the effort to learn how to do it yourself.

A depression can literally be lifted in less than 5 minutes once you

know how to do it and if you do it every time you feel down, it will

progressively get less and less and hopefully be totally gone one

day.

Have you done a liver cleanse lately? The liver is the seat of

emotions according to TCM (traditional chinese medicine) and a

clogged up one can really ruin our moods too.

Hugs from afar,

Sharon

[Guest guest]

Hi Jan,

totally relate, Some days I am exhausted from the constant fighting , and trying

to just get by. I have to do a time out day, no noise, dark, quiet, and lots of

thinking, just relaxing, and using heat ice etc...and trying to just say forget

it all for today. I find that the next day, or maybe even 2-3 days later, I am

back to my fight against it. But you need a break from it. Many times, I feel

like what is the use of going on. I have a Parrot, and I have to say just

knowing she would be left alone has saved my life a few times, cause I love her

to death and she is very spoiled, I wonder what would happen to her, how she

would be treated etc...anyway, you are not alone in these thought, but we must

keep fighting, just take breaks and don't feel guilty over them,

Jeanette

questions

I'm sure you will all know " where I am " when you read the following. I hate

to send out " downers " but that's the times when we need to reach out the

most!

[Guest guest]

>

>\ we all get these days

now with summer its harder

but just say i got out of bed today i can walk and talk

the lord will see you through

god bless

marianne

mo

>

>

>

>

>

>

> I'm sure you will all know " where I am " when you read the

following. I hate

> to send out " downers " but that's the times when we need to reach

out the

> most!

[Guest guest]

Oh gosh Jan, I think probably everyone here can relate - that's the comfort in

this group. We can turn to each other, becuz others just don't really get it.

I'm sorry you are going thru this and my prayers are with you to re coup as

quickly as possible.

I'm with Jeanette on this one, I try to keep in mind that tomorrow will be

better (or 2 -3 days of tomorrows) and then when the cloud lifts, even

temporarily, I try to really enjoy it, becuz the circle could start again at any

time.

Hang in there and always feel free to " unravel " here - I think we all need to

do that just to get thru!

Jane

Janice Couture wrote:

I'm sure you will all know " where I am " when you read the following. I hate

to send out " downers " but that's the times when we need to reach out the

most!

[Guest guest]

Janice,

I know you've received other replies. I don't check in very often.

I know my adrenal gland doesn't function properly...and that there is a

connection after years of illness. Perhaps someone else who is more medically

attuned than I am can explain this, but it's real and has been written about.

For years I felt the way you describe..then it got better. Now I only have

occasional days that are like the ones you're going through.

Many, many times I've wanted to give up. To be truthful, I'm not sure why I

haven't. Like the person with the parrot (sorry I can't remember her name),

often it's been the knowledge that my cat would have no one to take care of her

if I were gone! And I've thought of how awful my son would feel--even though

he's grown, I wouldn't want to burden him with that.

I've wanted to see an endocrinologist but whenever I've asked my doctors, I've

been discouraged. I'd really like to know if an enocrinologist could help...

Like others, sometimes I just give myself permission to do nothing, to have a

" not very good day " . People with other illnesses can do that, why not us?

Most of the time now I don't think about the past and what I've lost, or worry

about the future...I concentrate on what I can still do and what I hope to be

able to do. For me, meditation and visualization have been a big help...

No that you're not alone!

With love and hugs,

Theresa

[Guest guest]

Hi Jan,

I am new here also and post very little but I do read as much as I

can here. I felt I had to respond to this question you posed to us..

_______________________________________________________

You Said:

This is how I am feeling lately....as tho it takes a supreme effort

just to

keep my eyes open, to lift an arm, to hold my head up. Also feeling

sort of

" drugged " mentally...confused and unable to think at all. Has anyone

seen

an endocrinologist about these types of symptoms?

________________________________________________________

After attempting to get a diagnosis for what was going on with me, I

was finally referred to a Endocrinologist for all the tests required

to get a " Firm " diagnosis and answers to why I felt all the things

you have mentioned. In the end, I was told I have ME/CFIDS/Fibro

and told to increase my calcium and D...and then referred back to my

primary for treatment.

I have to go back a tad before I can go further here...

From all that I have read and can gather is that we all fall into

this group of altered auto ammune function but few of us have

identical symptoms. I personally have met very few if any that I

could identify with such as you exhibited in your post! I am also

fatigued to the point of non existance! I cannot plan later today

much less tomorrow. I have had to cancel doctor appointments when

they are running an hour or so behind because I simply cannot stay

awake physically and with brain function needed to comprehend the

most basic mental processes. (takes two to communicate last I heard)

I was the one that was discribed by all who know me to be the " one

you could count on " The super woman of multitasking with efficiency

second to none. I was considered to be hyperactive as a child

because I had energy that would not stop and that followed me into

adulthood. (of course as an adult it is seen as a good thing)

Suddenly, without notice but shortly after having spinal caged

fusion due to degenerative bone disease that I've had over many

years, I feel flat on my face! My life changed in a instant at a

time I was needed the most! I have had this fatigue that is beyond

belief. I had a sleep study done and they said they have NEVER EVER

seen anyone as sleepy as I am. The have to fight with most of their

patients to get one to two naps during the day to complete the study

and I was begging to go back to sleep! If they said no..I fell off

siting upright without notice or ability to do anything else. I

could write a book Jan, but believe me when I say " I know exactly

what your talking about! "

My life is an " existance " if breathing is life ...then okay, I have

one. I basically go without treatment now because I recently found

out my primary doctor who gets the updated info on this disease and

treatments....wants me to tell him what is the next step. HIs staff

doesn't give him all the literature sent to him. He has basically

sent me to a phyciatrist for evaluation of what anti depressant

would be good for me to be on for this. I am not interested in the

therapy I believe they want to do there...family background,

history, baggage of living in a abusive home and issues I have

already delt with in my life. Outside fo that...nobody knows much

about this disease much less what to do in treatment process. AS I

read...I become more frustrated with all the different things being

done or consumed as a treatment that may or may not help.

Yes Im frustrated, depressed (as result of illness not causing

illness) and mad as hell that those closest to me ...that should

know me by now think by researching treatments used by others as a

method for me of " wallering in my diagnosis " . I'm tired of hearing

how I have changed since the onset of this and will slap the next

person that says that to me...I swear! I am becoming more of a

recluse when I've lived my life basically as a outgoing person with

a real drive to help others. Sometimes I sleep or try to and am

acutely aware that I am on the edge of going out but can't quite

seem to drop off or the other extreme of going out but not waking

up! If I do the smallest of tasks, I know I will pay for it in a

short time in the form of sleeping 8 plus hours (nomatter what time

it is) to sleeping days and have to be awakened for food and or

meds. I have to say though, from what you stated about not being

able to lift your head at times...sounds to me more of the Myalgic

Enceph symptoms. I have known my condition could be worst compared

to those that have to have others flip them in bed as they cannot do

anything for themselves. I can at least get myself to and from the

bathroom unassisted. Showering here is a major ordeal for me as it

will exhaust me to the point I know I am going to be trying to

repair over following few days at best.

Im sorry ...seems I have written a book here and it was not my

intent. Just know that yes, we are here for each other. Some of us

need more communication than others or have more energy to post than

others but bottom line is..we are all in our own personal hell with

these varying symptoms of this illness that batches us all

together. I can identify with your statement about " living " . I have

a very firm belief in God and know to take my own life is not an

option...but must be honest, If I were told I would not be here

tomorrow, given the way I feel right now I dont believe I would care

at all. This is not living.

Last but certainly not least, I do hold hope that tomorrow things

could be different. With more research on the cause brings us a

step closer to a cure. On a good day or moment, I like to try and

sit outside if I can tolerate the light and enjoy the sounds of the

birds or laughter of a distant child playing in their

yard...anything that makes me feel " connected " and far away from the

dark room and bed that seem to be my best friend most days.

God Bless You Jan and all who have bore the job of reading this that

can identify with the plight I believe we all share on different

levels.

Dutchie

[Guest guest]

I couldn't answer the medical questions as I've never bothered with an

endrocrinologist; doubt it would help. So few doctors know jack about

this illness that I'd only go to another IF my doctor for ME sent me to

someone for some specific thing. Atleast HE knows this ilness and has

been treating it for a long time. I don't think alot of them know what

they are doing; their ideas seem not to be effective yet they keep

using the same treatment over and over.

I DO have some periods of time where I get so pissed off and feel

like such a large chunk of my life has gone by that I'll get pretty

twisted over it... For me,I have seen improvement, and the brain fog

stuff (such a bad name for that) is not even quite as bad. Actually,

what gets ME at the moment (we all have different things we get angry

about I guess) is that I can't work; I am dirt poor, no damn resources.

And I read this asinine thing about how I should eat. Ok; just try

doing that when you are eating via soup kitchens, going, when you have

the strength, to food pantrys and such. Tonight I ate some awfully

questionable stuff... Oh, and I got a Yodel (remember those?) for

desert. I mean, I SHOULD be grateful there is anything where I live,

but instead I am angry that I can't get to this place which is too far

downtown which gives out more balanced and better food (wealthier

neighborhood). Pretty stupid, huh?

One thing I do know; I seem to be 'angriest' at times when there is

something going on; such as an infection of some kind. (Honest! I am

really serious about this.) But there are also times when it gets sort

of ...loss of WORDS here... 'bigger'than that. A looking at my life

thing. And it has not been much of a life; I was at a point of MAYBE

getting it together when I got really seriously sick (symptoms got

worse actually) and it took a couple of years for a diagnosis and

treatment. Hey; whatever. I just need to keep on. One cool thing is I

have a dog; he does cheer me up even though I can barely afford him. He

is worth it. Keeps me from blowing my damn brains out in caseI get to

feelthat way as I could never leave him alone. My worst problem is the

one which is the poverty card; I want to MOVE badly. I cannot afford

this city I live in. I don't like it as much as I once did. I'm not

sure I would even if I were working... Most of all, I do not feel safe

here.

I don't know if this helped you or not; helped ME after reading

about having '2 veggie burgers and a yoghurt' etc for breakfast...

Jane & Bill the hound

NY, NY (You can write me anytime to rant; sometimes THAT helps...)

>> Second, am I the only one who is extremely (and not showing it)

>angry about> all that this DD has taken away from us? I feel as tho

>it has actually> taken my life!!! There is precious little left >that

>I can enjoy! Do any of> you ever think: " why bother? " . No, I >am not

>thinking of >suicide...but just> sort of " giving >up " ...........I have

>been fighting this for so long, and now

> after all these years...it just seems to be getting worse! Don't

>think> anyone understand unless they are living with this. I try to

>remember when> I have been " low " before...but I think this is the

>absolute worst it's ever> been..........and I got sick in '81 !!!!!!!!

> > Does anyone relate?

> Jan

[Guest guest]

These are questions put to me by a young journalist friend of mine who is doing

her internship. She is doing a study on indian doctors' attitude to euthanasia.

Please see if you could help her by giving her your viewpoint. You could

forward the mail to me or directly to her.

Thank you

Regards

Ashish

Nisha Nair wrote:

Date: Tue, 4 Jul 2006 16:50:06 +0530

To: ashgoe@...

Subject: Questions

CC: nikkisweetgirl@...

Q1. What is your stand on the issue of decreminalisation of Euthanasia in

India?

Q2.Give reasons in support of ur anwser, please.

Q3.What do have to say about the autonomy of an individual to die a death of

diginity?

Q4.Do u think that making euthanasia legal in a country like ours will give

impetus to organ trade?

Q5. What do think is a better option to live in a painful or vegetative state

or end ones life?

Q6.What do u think should b done to prevent the misuse of euthanisia if

implemented?

Q7.Do u think that a person who has lost his zest for life has right to

euthanasia?

Q8.Do u think there should b a specified age to be able to apply for

euthanasia?

Q9.Many a time people apply for euthanasia because they don't have money for

there treatment or they r deppressed how due respond to euthanasia in this

context?

Q10.Do u believe that the family of an terminally ill patient has the right to

dsecide about his death?

Q11.Do u think that a person who is suffering from an ailment will be in right

state of mind to able to asses what he wants to do with his life?

Please respond to these questions as soon as possible and also forward it to

other Doctors as well.

Thanking you,

Nisha Nair.

My e mail:sendtonisha@...

Phone:9313351975

P.S : I also need view point people who support Euthanasia, as most people I

have spoken to so far are against it and I can't right a one sided story.

Ashish Goel MD

Senior Resident, Medicine AIIMS

Correspondence: C2/403, Janak Puri, New Delhi 110058 INDIA (91 11 2555

2748)www.geocities.com/ashgoe

Love me most when I deserve it least, because that is when i need it most...

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