responses

[Guest guest]

Wandering off? following his shadow? being totally unaware of anything

around him? Your sounds just like Helen. Helen would often take off

over a ploughed field, or a totally empty beach with never a backward glance.

Last summer she was found over the road at the farm 4 times just wandering

around.

I have heard of proximity alarms being used, but didn't use one myself - I

think Helen would have removed it, then escaped. I have taught her how to

cross a road safely so if she does go off then she may be safer. I think

quite often Helen just did not hear me shouting for her to come back. She

now has grommets in her ears and does pay attention now and has done so for

the last year or so, but it is such anxious time because kids get can a long

way away very fast. At school, it has never really been a problem because

Helen has always had a full time assistant.

Eileen mum to triplets Emma, Helen (DS) and Kate (7 years)

[Guest guest]

Yes! LOL

> I never remember who asked or told me what.....but 's

> therapist just wanted me to plain rush her through things. I just

can't do

> it yet.

> Thank you to those who recommended keeping a journal or

chart. That

> makes SO much sense. I easily get confused about what happened

when or how

> long or whatever. Especially if we're trying to sort out mood

disorders

> from anxiety disorders, etc., this seems very important. I begin

the grand

> project today. (fannie may queen)

> PS. I'm going to resist playing my typical family role of

making sure

> everyone loves everyone and is at peace with everyone......does

everyone

> love everyone? Is everybody at peace with everyone? LOL

[Guest guest]

In a message dated 6/15/2003 8:14:02 PM Mountain Daylight Time, mike@... writes:

Bob - I should not paint all physicians with the same brush. I

respect the good ones. They don't all deserve respect, however. Of

the five ENT's I've seen, not one has told me what I have, I had to

figure that out on my own. The only suggestions they've come up with

are steroids and decongestants. Why is it that doctors seem to treat

only symptoms and not causes?

Lori

Lori,

I had to figure it out the diagnosis myself too. I made the diagnosis myself after having had the illness for about 6-7 years. I went to a very reputable American medical school in a large city and they "missed the diagnosis" as we say. I have had a very rough time with the illness.

I suspect the generally unartful approach to diagnosis and treatment of this illness is because it is relatively rare. Most allergists/ENTs have not seen any or many cases. They don't know how to recognize it or treat it. Some may recognize it, but exaggerate their experience, not having dealt with or seen many cases.

I agree that places like Harvard, Scripps or maybe s Hopkins that are more specialized in the illness are helpful.

Bob McGinnis

[Guest guest]

Sorry,

This letter should have been addressed to Mike, not Lori.

Bob McGinnis

In a message dated 6/15/2003 8:14:02 PM Mountain Daylight Time, mike@... writes:

Bob - I should not paint all physicians with the same brush. I

respect the good ones. They don't all deserve respect, however. Of

the five ENT's I've seen, not one has told me what I have, I had to

figure that out on my own. The only suggestions they've come up with

are steroids and decongestants. Why is it that doctors seem to treat

only symptoms and not causes?

Lori

Lori,

I had to figure it out the diagnosis myself too. I made the diagnosis myself after having had the illness for about 6-7 years. I went to a very reputable American medical school in a large city and they "missed the diagnosis" as we say. I have had a very rough time with the illness.

I suspect the generally unartful approach to diagnosis and treatment of this illness is because it is relatively rare. Most allergists/ENTs have not seen any or many cases. They don't know how to recognize it or treat it. Some may recognize it, but exaggerate their experience, not having dealt with or seen many cases.

I agree that places like Harvard, Scripps or maybe s Hopkins that are more specialized in the illness are helpful.

Bob McGinnis

[Guest guest]

When I got samters, I went on a vacation as previously stated and two weeks after vacation had a miscarriage and became allergic to asa. Losing my child was very high stress also.

Tami

responses

Hello AllThanks for your responses. So there are two moves and two for stress. I fit both cases. I had just finished finals when my trouble started, and I was in transit at the time.Sue - I have been lousy for the last two months. The weather here has been terrible. Overcast almost continuously, lots of rain. Perhaps that is why. I was doing okay until May. Perhaps it has to do with the pollens, but I'm leaning towards the rain now. I think we're more susceptible to the difference in pressures. I hope you feel better soon.Regarding the low-salicylate diet: I regard most of the data as suspect at this point, so without fasting, it's a shot in the dark. I'm sure there is a level of salicylate for each of us that, when exceeded, our symptoms present themselves. Obviously as the level is increased beyond that, the symptoms worsen. Aspirin would affect most of us in an extreme way, unless desensitized. The desens approach would then seek to raise that level considerably, so that backgroud salicylates (food and air contaminants) do not affect us.Ken - I appreciate your way of dealing with this. I understand why you don't want to give up any foods. I love M & M's and haven't had one in about 15 months. I also love to cook. Imagine trying to cook without any spices. I'll try to be more concise. I am reluctant to do it mainly because I'm afraid of the consequences of thinning the blood too much.Bob - I should not paint all physicians with the same brush. I respect the good ones. They don't all deserve respect, however. Of the five ENT's I've seen, not one has told me what I have, I had to figure that out on my own. The only suggestions they've come up with are steroids and decongestants. Why is it that doctors seem to treat only symptoms and not causes?LoriI'm glad Scripps is doing such work. I am not convinced that a definitive guide to salicylates in food exists, but I'm looking into it. I'm going to look up that journal tomorrow and see what work they did to get those numbers.That's it for now. Thanks all for the help.Regars,Mike

[Guest guest]

I developed Samters within a year of being involved in a very bad auto accident. I was definitely very stressed out after that. I had to be on antianxiety medication for having terrible panic attacks during that time. I was suffering from PTSD.

-- Re: responses

When I got samters, I went on a vacation as previously stated and two weeks after vacation had a miscarriage and became allergic to asa. Losing my child was very high stress also.

Tami

responses

Hello AllThanks for your responses. So there are two moves and two for stress. I fit both cases. I had just finished finals when my trouble started, and I was in transit at the time.Sue - I have been lousy for the last two months. The weather here has been terrible. Overcast almost continuously, lots of rain. Perhaps that is why. I was doing okay until May. Perhaps it has to do with the pollens, but I'm leaning towards the rain now. I think we're more susceptible to the difference in pressures. I hope you feel better soon.Regarding the low-salicylate diet: I regard most of the data as suspect at this point, so without fasting, it's a shot in the dark. I'm sure there is a level of salicylate for each of us that, when exceeded, our symptoms present themselves. Obviously as the level is increased beyond that, the symptoms worsen. Aspirin would affect most of us in an extreme way, unless desensitized. The desens approach would then seek to raise that level considerably, so that backgroud salicylates (food and air contaminants) do not affect us.Ken - I appreciate your way of dealing with this. I understand why you don't want to give up any foods. I love M & M's and haven't had one in about 15 months. I also love to cook. Imagine trying to cook without any spices. I'll try to be more concise. I am reluctant to do it mainly because I'm afraid of the consequences of thinning the blood too much.Bob - I should not paint all physicians with the same brush. I respect the good ones. They don't all deserve respect, however. Of the five ENT's I've seen, not one has told me what I have, I had to figure that out on my own. The only suggestions they've come up with are steroids and decongestants. Why is it that doctors seem to treat only symptoms and not causes?LoriI'm glad Scripps is doing such work. I am not convinced that a definitive guide to salicylates in food exists, but I'm looking into it. I'm going to look up that journal tomorrow and see what work they did to get those numbers.That's it for now. Thanks all for the help.Regars,Mike

[Guest guest]

Dear Mike,

Maybe the problem was stress too. Actually when the water was going down

the wall I was having incredible financial stress along with other

stresses. It was awful.

responses

<< File: ATT00041.htm; charset = ISO-8859-1 >>

[Guest guest]

, private or semi-private rooms are completely up to the hospital and don't have anything to do with the surgical procedure you have. You'd need to ask your surgeon which hospital(s) he has surgical privileges at, and then you'd need to call the hospital and ask if they have both private and semi-private rooms available, and then you'd have to check to see if your insurance will pay for you to have a private room or if they only pay the semi-private rate.

In my town, a new hospital opened up just a couple years ago and all they have is private rooms, but the older hospital has both kinds.

If you check the databases, files, and polls sections, you'll be able to see what types of situations different people have reported in this group. Unfortunately, there are no simple answers to "was it a success" because there are so many different variables.... each of us have different doctors in different hospitals and with different symptoms/outcomes from the same disease/treatment.

Debbi in Michigan

Could you tell me exactly how you have been after surgery? What was your experience like? Was it is a success or a flop? Oh, and in the hospital...did you have to share a room with another patient or did you have the whole room to yourself...?Thanks again for dealing with me!

[Guest guest]

Lord but I do love all the perfect, above it all type of people who have this

God like ability to Judge everyone else in life. It must be nice to be perfect

and all knowing and so very expressive at all the proper moments....... :-)

It's like someone who see's the storm coming and then watch's from behind their

curtains as all the hell is wraught by the storm, never going out to help them

fight the storm, but then when it's over they are quickly outside telling

everyone who smart they were by staying in and out of harms way while others did

all the work in the trench's. Gee, it's nice to have all this wonderful help

now after it's all over. When the sun goes down it's easy to look at say the

Sun has gone down, but where were they when the Sun was out in the full

heartless Boil of the day burning everything it touched. They were

hiding.......waiting till it's over so that they can come out and say " See how

smart I am " ! I was hiding !!

Kurt

responses

dear members...is there something about this disease that makes us

disagreeable? i've seen the same juvenile responses and behavior on granny

barb's site and it has always caused a small exodus and then the creation of

a NEW and more DEMOCRATIC site and then that site gets polluted with petty

people who have very thin skins along with crappy blood.

merle pollack

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

[Guest guest]

Merle asks ironically if our disease causes us to

become petty. I doubt that our group struggles have

anyting to do with CLL alone, but I think it really is

caused by the emotional pain and dramatic change in

our lives that follows receiving the diagnosis of

having any serious disease. We get frightened and

angry and sometimes act out on other people our fears

and anger that a cure is remote and perhaps

impossible. Adjusting to a terminal illness is no

picnic. it has been very helpful to me to have the

strength and support of this group to help me cope

with my fright and fury. I'm looking forward to my

third IVIG this coming Friday. IVIG always seems to

energize me. Carolyn Swift, dx 9/04, Sll-CLL,

follicular lymphoma, IVIG Martch, April, asymptomatic

except for cough which may or may not be related.

--- merle pollack <brabiz@...> wrote:

> dear members...is there something about this disease

> that makes us

> disagreeable? i've seen the same juvenile responses

> and behavior on granny

> barb's site and it has always caused a small exodus

> and then the creation of

> a NEW and more DEMOCRATIC site and then that site

> gets polluted with petty

> people who have very thin skins along with crappy

> blood.

>

> merle pollack

>

>

>

>

[Guest guest]

Couldn't all involved in this tiff just take it off the list and let the

rest of enjoy the group as we have in the past?

It is getting ridiculous.

Please just stop it!

On 5/14/05, Kurt Grayson <thel.g@...> wrote:

>

> Lord but I do love all the perfect, above it all type of people who have

> this God like ability to Judge everyone else in life. It must be nice to be

> perfect and all knowing and so very expressive at all the proper

> moments....... :-) It's like someone who see's the storm coming and then

> watch's from behind their curtains as all the hell is wraught by the storm,

> never going out to help them fight the storm, but then when it's over they

> are quickly outside telling everyone who smart they were by staying in and

> out of harms way while others did all the work in the trench's. Gee, it's

> nice to have all this wonderful help now after it's all over. When the sun

> goes down it's easy to look at say the Sun has gone down, but where were

> they when the Sun was out in the full heartless Boil of the day burning

> everything it touched. They were hiding.......waiting till it's over so that

> they can come out and say " See how smart I am " ! I was hiding !!

>

> Kurt

> responses

>

> dear members...is there something about this disease that makes us

> disagreeable? i've seen the same juvenile responses and behavior on granny

> barb's site and it has always caused a small exodus and then the creation

> of

> a NEW and more DEMOCRATIC site and then that site gets polluted with petty

> people who have very thin skins along with crappy blood.

>

> merle pollack

>

>

> ------------------------------------------------------------------------------

>

[Guest guest]

All,

I was really surprised on the responses that I received. A lot of people even

emailed my privately. The one thing that really surprised me was some of these

so called " members " disrespected me in their emails. I wrote an email inquiring

on a few things, and some responses were cruel...some individuals were trying to

be funny by being [rude]. Don't you guys understand. I'm new to this

community. I came to seek others who are just like me. If I knew there was

such a hierarchy with this, I wouldn't have bothered. I thought we are all

equal here? Because I'm new...I need to pay my dues by making a post or

replying to one? What is wrong by sitting in a corner and seeing maybe

something pops up that is interesting and maybe use that response in my daily

life? Is this how everyone is at these conventions? You see someone who is new,

all by him/herself...alone. You just leave him/her there or do you approach

them and try to make friends with

them? This is the exact thing. I guess what they say about " cliques " are

true. That's why I'm terrified of going to one of these. I don't want to be

one of those people in a corner. I feel that these lists are the same way. You

have your members who post something and right away you see responses...even if

the posts are kind of stupid. Then someone who is new makes a post, and

nothing. Whatever.

For those who were kind enough in their emails welcoming me, I thank you. I did

get all 'warm and fuzzy' inside.

I'm tired...its been a long weekend. I need a nap.

Cody

[Guest guest]

Hi Cody,

 

I have to say that first off, this is just an e-mail group, this is not the

organization of LPA. In person chatting is much different than this group. 

Secondly we are all equal here, their is not a hierarchy, just people who

respond more often than others, anyone is welcome to respond or post.  As far as

being new, I think in person people would definitely speak to you, however on

this listserve, I know as far as I am concerned I have no idea who is new on

here nor do I even know who is a member on here.  On here sometimes you will

have to do the introductions first and ask your questions first, however there

is nothing wrong with sitting in the corner of this group if that is what you

choose to do.  Personally though, I don't think it is the best thing to call

posts you don't agree with as stupid, again, what you may consider stupid

another person considers important which is why they posted it to begin with.  I

am sorry you did not get the warm

reception you were expecting.

 

-

From: Cody <cwatson0919@...>

Subject: responses

dwarfism

Date: Monday, August 18, 2008, 2:01 PM

All,

I was really surprised on the responses that I received. A lot of people even

emailed my privately. The one thing that really surprised me was some of these

so called " members " disrespected me in their emails. I wrote an email inquiring

on a few things, and some responses were cruel...some individuals were trying to

be funny by being [rude]. Don't you guys understand. I'm new to this community.

I came to seek others who are just like me. If I knew there was such a hierarchy

with this, I wouldn't have bothered. I thought we are all equal here? Because

I'm new...I need to pay my dues by making a post or replying to one? What is

wrong by sitting in a corner and seeing maybe something pops up that is

interesting and maybe use that response in my daily life? Is this how everyone

is at these conventions? You see someone who is new, all by him/herself.

...alone. You just leave him/her there or do you approach them and try to make

friends with

them? This is the exact thing. I guess what they say about " cliques " are true.

That's why I'm terrified of going to one of these. I don't want to be one of

those people in a corner. I feel that these lists are the same way. You have

your members who post something and right away you see responses... even if the

posts are kind of stupid. Then someone who is new makes a post, and nothing.

Whatever.

For those who were kind enough in their emails welcoming me, I thank you. I did

get all 'warm and fuzzy' inside.

I'm tired...its been a long weekend. I need a nap.

Cody

[Guest guest]

Sorry for what you went through privately with some on here. But, to

add to that, some of what you said is true AND some of it IN THIS NEW

POST OF YOURS ISN'T as well....

BUT, see it in this way, Cody, not all of us are perfect... because

some of us are nice and some of us have issues that go deeper than

just our dwarfism too....

Still, all in all, I look at this support group as no different than

any other support group. In other words, to quote the famous words of

another support group that closes with this statement every time,

" Take what you want and leave the rest, " to which I add this to that,

when it comes to people as well as to any 'thing' you may 'get' out of

the group, " Take some of us (as we are) and leave (or ignore) the rest. "

Me personally, I would've blasted ya openly and publicly, haha, that

way, whether you end up liking me tons or hating me tons more, haha,

you will always know where I stand and this too, I didn't do it

silently, all the while pretending to still be a friend by correcting

you:P.

Hope to meet you one day:), Cody, over a cold soda and a good argument,

haha;), grady:)

[Guest guest]

That works great for older posts but the search engine died on

March 17.

Any posts pertinent to this topic would have to be located in a post-by-post

search in the MESSAGES menu.

This is affecting all , not just .

Bob

.........

Re: Re: Responses

,

You can always go the group web site and look at the archives. If you

use the advanvced search option, you can type in a name or email address

and/or any other criteria you want and the associated posts will be listed.