To Chris

[Guest guest]

HI Dana:

My bead on this is that this is an important defence mechanism for our

beloved OCDers. What has helped me and Steve is for me to be very

respectful about his opinion but to continue to act on what I know is his

OCD and denial. What helped even more is for us to communicate

non-verbally about this. It was amazing how often he was watching me and

cueing of my very subtle (IMO) body language as to what I was thinking and

how I would react. His CBT therapist brought this to my attention.

Then I embarked on a period of ignoring his OCD symptoms and letting him

deny without comment. Pretty soon his doc and therapist knew him well

enough that I no longer needed to bring reality to the table. As they also

allowed him the comfort of his denial but kept working on his case I just

took a leaf out of their book and do the same thing. One of the few

advantages of having my own serious illness is that I can share with him

how important denial has been to me in my own coping with illness and that

I do not want to deny him the same comfort as long as it does not stand in

the way of his getting the best treatment possible.

Good luck, aloha, kathy (H)

kathyh@...

At 03:41 PM 01/08/2000 -0500, you wrote:

>From: Dana Carvalho <clayvon@...>

>

>I was just cleaning out my mailbox and I re-read a post where you said:

> " It's ironic that as the person most championing her

>mental

>health, she probably gets the most negative feedback from me. "

>

>Boy can I relate to that! Isn't that ironic? One problem I'm finally

>getting a handle on is how to make sure I can talk to her doctor without

>her there. It is just too hard for her to hear me describe her

>behavior. She argues with me, denies it, attacks me( " yeah, well you're

>not perfect either! " ) etc. Her last doc finally got it that I wouldn't

>talk about her with her there. But he only did med checks so he wasn't a

>big help anyway. Dr. March, whom she sees only for diagnostic purposes,

>still doesn't see why he should talk to me alone so he doesn't. I think

>that may be one of the reasons he keeps minimizing her problems - he

>doesn't hear about them and he doesn't read between the lines when I try

>to allude to them. The first time he saw her, when she was first

>diagnosed, it was okay because she had filled out numerous

>questionnaires which detailed her symptoms. After that, the other 2

>times he saw her, it was just the 3 of us talking in his office with her

>pretty much denying stuff, me trying to bring stuff up and the ensuing

>tears and defensiveness. I already wrote about the last time so I

>won't go into it again.

>I wrote recently that I made an apt. with a new doctor. I told them

>that I wanted to talk to the doctor alone first, either she could call

>me before the apt. or I would come alone, but I need to ask some

>questions and see if I can work with this person before I involve Ava.

>

>I know that wasn't exactly what you were talking about when you

>mentioned negative feedback, but it's a part of the negative information

>she hears from me so I wanted to mention it. Another part is that I'm

>trying to get her to see some of her more problematic behavior as OCD

>related, so where others might just say Ava be quiet or I said NO, I'm

>talking about it in terms of OCD and she hates that. But I don't know

>how else to get her invested in fighting OCD if she doesn't even see

>it. This is one of the things I hope the new doc will help with. Right

>now, Ava just says I'm the only one who is bothered by her ocd, no one

>else thinks it's a problem. Jeesh.

>

>Dana in NC

>

[Guest guest]

Me talking alone to the therapist has been a big issue with Dan. With

his first psychiatrist, he objected violently to my talking to the

doctor when he was not present. He did not trust that doctor and would

not open up and talk to him himself. He did not want the two of us

talking behind his back.

With the present psychologist, there are a few times when she asks to

meet with the parent alone, and Dan does not seem to object to that. At

first she met with us together; now she meets with Dan alone most of the

time. Since he trusts her and opens up with her, that is probably the

reason he does not worry when I talk to her alone.

With Dr. Rapoport, who just does his meds, after talking to him alone

the first time, we now meet her as a family, with no one talking to her

alone. Of course if I had a problem, I could phone her and talk

privately.

Judy

Dana Carvalho wrote:

>

> From: Dana Carvalho <clayvon@...>

>

> Hi

>

> Boy we sure learn as we go don't we! And most of what I learn is

> right

> from this list. And most of what I need to learn is to trust my

> instincts and judgment.

> Dr. March has never been willing to see me or talk to me alone. I've

> taken Ava to him 3 times, each for diagnostic purposes since he

> doesn't

> follow patients. Each time I asked to talk to him in private for a

> few

> minutes and he refused.

> The doc that Ava's been seeing for med checks (that's all he's willing

> to do) saw no reason to meet alone with me either. He said he didn't

> want Ava to think we were talking behind her back. I can't believe I

> went along with that for so long. Finally I called him and told him

> that while Ava was his patient, I was his client. Since I was the one

> treating Ava, all he was doing that was helpful was writing his name

> on

> a pad, I was the one who needed his guidance on how to do that. Ava

> wasn't concerned with the talking behind his back thing, that was HIS

> issue and he needed to get over it. She never expressed an interest

> in

> talking to him alone, she never told him things that I didn't already

> know or that once she thought of them there, wasn't willing to tell me

> about. If she need a therapist to talk to I'd get her one. I said

> that

> in order for us to continue I needed to be able to consult with him on

> a

> regular basis and we would need to be partners or collaborators in

> Ava's

> treatment. I told him I would no longer discuss Ava in front of Ava

> again, since she felt betrayed when I did and I wasn't really able to

> speak freely in front of her because of that. If he wasn't available

> for that then we'd see another doctor.

> He readily agreed to see me or do phone consults with me. It's almost

> as if he knew that was the right thing to do all along but now that he

> was " caught " he was willing to do the right thing. The more I was

> able

> to consult with him the more I realized why he didn't do it in the

> first

> place. Let's just say he was really good at writing his name on a pad

> and less good at other aspects of his profession.

> Your suggestions for what to ask a doctor up front are good ones.

> Since

> I'm in the process of getting Ava started with a new doc these are

> helpful. The first thing I did was to make an apt to see her alone

> first.

> Does anyone else have any suggestions about what to ask when I

> interview

> her?

> Dana in NC

>

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

> [

[Guest guest]

HI in San Diego,

This has certainly been a long recovery for you! Poor Steve!

Have you considered hiring an older teen to come over on the weekend to

help out? Maybe s/he can do some activities with the kids so that you and

Steve can have a break? For referrals try the local high school

guidance/student services department. Explain that this is not just any

family, but a very special family, that needs some temporary relief!

YOU take care too! Hugs, wendy, in canada

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

HI

Thanks so much for your offer of help. I know you've been " in the

trenches, " with social issues as well.

As I've admitted before, I am not talented at designing exposures for

andra, so I'll be grateful for your input.

Two things I'm noticing about andra's social skills this year:

One is that she has new O's and C's involving editing her thoughts in

her head before she says them, and then going back to revise and correct

herself in conversation. She admitted to her therapist yesterday that

she feels everything she says must be " perfect, " or else kids will laugh

at her. The result is that her conversation can be very frustrating to

attend to, even for me, so I can imagine how her playmates must feel!

She also expects them to wait for her while she adjusts shoes, pants,

etc. to feel just right, and of course no second grader wants to spend

recess time watching her friend tie and re-tie her shoes!

Second is the age old problem of bossiness, which you so aptly

described. andra doesn't do this at school, but at home her anxiety

level goes up so high (the more cherished the friend, the higher the

anxiety) and she totally reverts into bossy mode in a desperate attempt

to make the situation feel less out of control. A typical scenario

would be: " Let's ride my scooter! You watch me ride for 20 minutes or

so and then you get a five minute turn! "

andra had such a wonderful year socially last year that these new

challenges are still raw and emotional for me. Her teacher did point

out that, thanks to school district re-zoning, she has many new kids in

her class this year and that is a lot for her to cope with.

Thanks again for your help and encouragement Chris. Are you feeling

better this week? Take care,

Lesli

Roman wrote:

>

> Hi Lesli,

>

> I was sorry to read about andra's OCD interfering with social skills and

friends at school. Kelsey generally has a low tolerance threshold for friends

who want things to be different then she wants them to be, which is the root of

her social challenges. It's interesting that her one close friend last year and

the one this year are both also stubborn girls. In both cases, I've heard

teacher reports that they fight often (Kelsey and her friend) but are very close

regardless. Lately, Kelsey reports that her friend hits her, pulls her arm and

once " made her skin her knee " " for no reason at all. " While she's sure she

hasn't provoked such behaviors, I KNOW how annoying it can be when Kelsey gets

bossy and controlling so I can see how a child might lose their temper!

>

> What OCD issues do you see around andra and her friendships? Perhaps you

can design some E & RP around them. (You guessed it: you get to be the friend!) I

conscripted awhile back and gave both kids rewards when Kelsey could let

be in charge for 5 minutes in the middle of a game when she was being

bossy. Also, since she liked to do a lot of pretend play then, we'd make up

plays, where I got to make all the rules in version I and then she did. It

really seemed to help, but then we drifted back....

>

> Take care and let me know if I can help,

>

> in San Diego

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In the

body of your message write: subscribe OCD-L your name. You may subscribe to

the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , Roman,

and Jackie Stout. Subscription issues, problems, or suggestions may be

addressed to Louis Harkins, list owner, at harkins@... .

[Guest guest]

Ahhh yes! And for some reason, the name Annie seems to fit her; I

don't know why I feel that way!! It may not be " nice " but I do enjoy

reading about the amusing habits of kids not my own!!! But behind

all the " behavior " she's obviously very bright and creative!! Will

make some good stories for the grandkids! Lord, I don't know how I'd

handle it myself. I guess it would depend on my mood at the time of

any " incident " .

I guess I'm lucky that it was my most CALM, LAID BACK kid that got

OCD! If 's twin, , had got it (he who I have always

called HYPER), I think I'd be competing with you and stories about

Annie! 's a nonstop talker only with US at home. He does get

in trouble at school the past couple years for talking when he

shouldn't be but not enough to cause a real problem. It's always

been like he saves it all up for home. When he was younger and a lot

more shy, he'd go all day at school and NOT talk until he got in the

car, then it was nonstop, like it'd just been building up. He'd get

home and need to race around the house outside a few times just to

let out all the energy or something. Plus he's a hitter; always

hitting on since infancy! finally learned to fight

back but though 's the smallest in his grade at school, I

sometimes think he could beat up a high schooler; he is good! Too

bad I can't afford martial arts for him! He'd be too shy to go tho.

I tell NOT to fight back; then I can get on only about

hitting and not walk in on both of them and hear 2 totally different

stories about the whole thing!

, my OCDer, was always the couch potato, most patient child;

less talkative but only because no one can talk much, even today,

with around!! In the car once when couldn't get a word

in, once said was like the energizer bunny - he just

keeps going and going and going.... I fully agree!

How's Annie do in school? Is it hard for her to sit still once the

work is done??

> Hi

> It's nice to hear someone is still out there!

> What's Annie doing that looks like ADHD?? Just the usual

Annie stuff,

> multiplied by 10 : impulsively ringing strangers' doorbells to

solicite money

> to help with a neighbor's surgery, hanging upside down from 15 foot

high

> structures, talking and interrupting so much even the pdoc was worn

out by

> her, unable to write a note on a friend's birthday card without

forgetting

> the point before it was done, spending most of her time standing on

her head

> kicking pictures off the wall by accident (over and over and over

and

> over...), etc. She has always leaned heavily in that direction

(well, not

> always - only since she got sick at 4 1/2) but this summer even her

friend's

> parents have begun to comment on it. I'm hoping the meds adjustment

will

> help, and that it won't just cause her OCD to flare up again. As my

> ever-so-logical husband pointed out, what will happen is that she

will be a

> little less hyper and out-of-control, with more OCD (and therefore

more

> anger...). But at least we're used to that by now!

>

[Guest guest]

> Hi I have had similar " homework " experiences from my 8 yr.

old son and I guess I just chalked it up to his symptoms waxing and

waning. He tries to avoid handwriting at all costs, but every so

often he will insist on doing it himself. He had OT until this

school year, and because he wanted so badly to " graduate " he proved

to the OT that he could write his letters in cursive and she is on a

consult basis now. I would just be grateful for now and wait and see

if he continues to do the work himself! So much of this disorder

involves acceptance of the unexplainable! Blessings,

Very true, . Each case is different. With my son (10),

once I looked at him as CAPABLE (with the encouragement of his

therapist), he began to improve drastically. (and he was declined OT

TWICE, so even the 'experts' don't see a disability here) Yet, he

tries to pull me back in with his manipulations, but I don't fall for

it. He's extremely manipulative and controlling --whining, moaning

and groaning, saying " I can't do it " with a cocky smile on his face.

He puts on the biggest ACT you've ever seen. I don't buy it

anymore! Plus, his teacher spoke to him and told him that it's ok

for mom to write his homework, but it's FANTASTIC when he does it by

himself. She also gives him rewards when he's completed it himself -

without my help. Amazingly, he's been able to do it each night BY

HIMSELF (wow, how did THAT happen?) Yet, a few months ago and last

year, it was 'impossible' for him. Right.

However, in Chris's case, her son (12?) could be waxing and

waning and seriously having trouble, and then ... suddenly, he has a

good day. Therefore, I'm glad that you and Judy spoke up and shared

your wisdom. I am by all means, NO EXPERT and 's OCD and

handwriting difficulties are all very minor now and no longer center

stage in our lives.

Joni

[Guest guest]

everybody that I've heard from on this board has something to

offer my curious mind. It's had a calming effect on me. I do so

appreciate that you took the time to share your condition with me and

to offer some helpful advice. My heart goes out to you having other

health problems to deal with. " A " is difficult enough. I will keep

in touch and hope you do the same.

thanks for the email tip. hope this works.

judy

> Hi Judy,

> Firstly email bits of info. When you press reply it will show for

example my message . Thats fine . Just type your reply in the space

above it like I am doing now and then send. Then when the person gets

the message they get the new bit ( eg. from me to you ) and the old

bit too ( eg from you to me ).

>

> Its hard having a chronic condition but don't make it harder for

yourself . At the moment you are going through a tough time and its

not really " feeling sorry for yourself " . As I said earlier half of

the battle with dealing with chronic illness of any sort is admiting

to yourself and then others close to you (inc us as its safe to say

things here .. or at least it should be !) that life isn't easy at

the moment and just take life a minute or five minutes at a time not

trying to take huge steps or planning things too far in advance. A

friend of mine used to say " be kind to yourself " and really it used

to annoy me until I realised that I did need to be able to have

quality time just for me where I could do something I could manage

and relax. Everyone needs that really but you need it more so when

coping with limitations and what is till a huge shock and a new phase

in your life .

>

> I have only had botulinum toxin so far X 2 . At the last endoscopy

things weren't so bad as far as the sphincter itself was concerned

but the 2nd manometry showed the problems still further up in my

oespohagus and I choke ++++ and can't get solids down let alone into

my stomach! The first manometry showed definate ( before anybody

thinks its not " A " at all because it is !!!) problems with the

sphincter.

> The other problems relate to the rest of my digestive system as

things stay in my stomach ( once I actually manage to get it there !)

for too long and I look about 8 months pregnant ( and I've had to

convince a few Drs that I don't need a pregnancy test along the way

with this problem!) . So now they have discovered its the motility (

movement ) of the whole of my digestive system and are looking at the

best way forward. I live on nutritional suppliment drinks such as

enlive and fortijuice, nutriplus , complan and build up. Then I make

soups and strangly enough have recently discoverd that veg such as

spinach cooked well and blended with some potato onion and nutmeg is

well digested. Many other veg or too much of it causes masses of pain

and so I just do the best I can and limit myself to what I know is

OK . I can only mange tiny bits of poultry liquidised in my soup as

red meat causes major pains . Fruit is another no-no except a tiny

bit of the organic baby food jars such as apple or blackberry and

apple mixed with some icecream etc.as a " treat " !!! I went through a

stage of not eating out and used ot cook a lot for friends so that

has meant many changes. Now they understand the condition I go to

them and take a packet or container of soup or a drink with me. Some

of them liquidise things for me and I just eat slowly. I go out for

meals and ask if the soup is lumpy!! If it is I explain I cannot eat

lumps and could they liquidise it for me. I've not had anybody refuse

yet but haven;t been at rush hour times or to unfamiliar places yet!!

When I could still eat I would ask for them not to put side salad on

say a jacket potato snack because I couldn't eat it and would prefer

not to see it. You are paying so it just takes a bit of courage I

suppose and to do it with close family or a friend who knows the

situation. I also used to ask for extra sauce or gravy to soften

things abit .

> So whilst I have " A " it seems I have further problems that they are

strugling to know what to do about. The last time I went various

options were discussed and further investigations requested as I have

other health problems such as an autoimmune disorder and they are

looking to see if there is a link ( leaving the achalasia out of this

bit OK ) with the further troubles and the other problems I have.

Whatever it is I have been prepared by drs and dietician that I might

not eat solids again due to the further problems I have. So its lots

of experimentaiton with the liquidiser and as I said earlier taking

things at a pace I can manage to deal with it all.

>

> I am fortunate to have a good support network as without my

friends , family and faith I don't know what I would do.

>

> Watch the weight loss and if it starts to escalate tell somebody as

there are drinks such as those I mentioned that they can prescribe

for you . I don;t know where you are but there will be something

either the same or similar available . Do you have contact with a

dietician ? If not can you get one?

>

> I know this message is rather long but I wanted to explain to you a

little of what is happening here. I value this group very much and

don't always say very much as once when I did make comments I had a

few not too helpful replies and got very upset by one persons

repsonse esp. at a time when I was very ill. Then on another occasion

when I asked a couple of questions nobody whatsoever responded . I

know most of us probably won't ever meet but we can be friends

through the wonders of technology.

>

> Take care, keep writing and ask questions at any stage along the

way.

>

> Bye for now

>

> Chris

>

>

> To Chris

>

>

> I wanted to reply to your message but when I hit the " reply "

button

> it just showed your message. I'm new at this.

>

> Since I've found this board, I'm emotionally better just knowing

> somebody understands. I have to work on this not feeling sorry

for

> myself.

>

> What treatments have you had to treat your Achalasia? Have you

had

> surgery? If so, tell me about it. Why don't the doctors know

what

> to do in your situation? I'm glad my gastro doctor knew about

> Achalasia. Otherwise, I don't know how long my diagnosis

would've

> taken. I'm hoping to find out more when I visit with the surgeon

> next week.

>

> My difficulty swallowing came on like a bang and continues to get

> worse even faster. I'm talking just in a few months.. I eat

soup,

> puddings, ice cream, mashed potatoes, etc. No meat. I wasn't a

big

> meat eater anyway, so that's no big deal. My husband is the

chief

> cook and he prepares meals the way a surgeon operates...

> Methodically. Going to dinner with friends was always a big

event.

> Now when we have company, I eat my soup before they get there so

I'm

> not belching, gagging and throwing up slime... The last time I

went

> out to dinner was in November for my grandson's birthday. I ate

a

> small piece of salmon and 1/2 potato. What do the rest of you do?

> Any hints to make it bearable?

>

> I have lost about 15 pounds in the last couple of months and I'm

> still about tweny pounds over weight so I'm not concerned at this

> point about the weight loss. (I realize this is not good to

loose

> weight in this manner)

>

> I'm so happy to find you all. Thanks for improving my spirits..

>

> judy

>

>

>

[Guest guest]

Hi Judy,

Firstly email bits of info. When you press reply it will show for example my message . Thats fine . Just type your reply in the space above it like I am doing now and then send. Then when the person gets the message they get the new bit ( eg. from me to you ) and the old bit too ( eg from you to me ).

Its hard having a chronic condition but don't make it harder for yourself . At the moment you are going through a tough time and its not really " feeling sorry for yourself" . As I said earlier half of the battle with dealing with chronic illness of any sort is admiting to yourself and then others close to you (inc us as its safe to say things here .. or at least it should be !) that life isn't easy at the moment and just take life a minute or five minutes at a time not trying to take huge steps or planning things too far in advance. A friend of mine used to say "be kind to yourself" and really it used to annoy me until I realised that I did need to be able to have quality time just for me where I could do something I could manage and relax. Everyone needs that really but you need it more so when coping with limitations and what is till a huge shock and a new phase in your life .

I have only had botulinum toxin so far X 2 . At the last endoscopy things weren't so bad as far as the sphincter itself was concerned but the 2nd manometry showed the problems still further up in my oespohagus and I choke ++++ and can't get solids down let alone into my stomach! The first manometry showed definate ( before anybody thinks its not "A" at all because it is !!!) problems with the sphincter.

The other problems relate to the rest of my digestive system as things stay in my stomach ( once I actually manage to get it there !) for too long and I look about 8 months pregnant ( and I've had to convince a few Drs that I don't need a pregnancy test along the way with this problem!) . So now they have discovered its the motility ( movement ) of the whole of my digestive system and are looking at the best way forward. I live on nutritional suppliment drinks such as enlive and fortijuice, nutriplus , complan and build up. Then I make soups and strangly enough have recently discoverd that veg such as spinach cooked well and blended with some potato onion and nutmeg is well digested. Many other veg or too much of it causes masses of pain and so I just do the best I can and limit myself to what I know is OK . I can only mange tiny bits of poultry liquidised in my soup as red meat causes major pains . Fruit is another no-no except a tiny bit of the organic baby food jars such as apple or blackberry and apple mixed with some icecream etc.as a "treat" !!! I went through a stage of not eating out and used ot cook a lot for friends so that has meant many changes. Now they understand the condition I go to them and take a packet or container of soup or a drink with me. Some of them liquidise things for me and I just eat slowly. I go out for meals and ask if the soup is lumpy!! If it is I explain I cannot eat lumps and could they liquidise it for me. I've not had anybody refuse yet but haven;t been at rush hour times or to unfamiliar places yet!! When I could still eat I would ask for them not to put side salad on say a jacket potato snack because I couldn't eat it and would prefer not to see it. You are paying so it just takes a bit of courage I suppose and to do it with close family or a friend who knows the situation. I also used to ask for extra sauce or gravy to soften things abit .

So whilst I have "A" it seems I have further problems that they are strugling to know what to do about. The last time I went various options were discussed and further investigations requested as I have other health problems such as an autoimmune disorder and they are looking to see if there is a link ( leaving the achalasia out of this bit OK ) with the further troubles and the other problems I have. Whatever it is I have been prepared by drs and dietician that I might not eat solids again due to the further problems I have. So its lots of experimentaiton with the liquidiser and as I said earlier taking things at a pace I can manage to deal with it all.

I am fortunate to have a good support network as without my friends , family and faith I don't know what I would do.

Watch the weight loss and if it starts to escalate tell somebody as there are drinks such as those I mentioned that they can prescribe for you . I don;t know where you are but there will be something either the same or similar available . Do you have contact with a dietician ? If not can you get one?

I know this message is rather long but I wanted to explain to you a little of what is happening here. I value this group very much and don't always say very much as once when I did make comments I had a few not too helpful replies and got very upset by one persons repsonse esp. at a time when I was very ill. Then on another occasion when I asked a couple of questions nobody whatsoever responded . I know most of us probably won't ever meet but we can be friends through the wonders of technology.

Take care, keep writing and ask questions at any stage along the way.

Bye for now

To Chris

I wanted to reply to your message but when I hit the "reply" button it just showed your message. I'm new at this.Since I've found this board, I'm emotionally better just knowing somebody understands. I have to work on this not feeling sorry for myself. What treatments have you had to treat your Achalasia? Have you had surgery? If so, tell me about it. Why don't the doctors know what to do in your situation? I'm glad my gastro doctor knew about Achalasia. Otherwise, I don't know how long my diagnosis would've taken. I'm hoping to find out more when I visit with the surgeon next week.My difficulty swallowing came on like a bang and continues to get worse even faster. I'm talking just in a few months.. I eat soup, puddings, ice cream, mashed potatoes, etc. No meat. I wasn't a big meat eater anyway, so that's no big deal. My husband is the chief cook and he prepares meals the way a surgeon operates... Methodically. Going to dinner with friends was always a big event. Now when we have company, I eat my soup before they get there so I'm not belching, gagging and throwing up slime... The last time I went out to dinner was in November for my grandson's birthday. I ate a small piece of salmon and 1/2 potato. What do the rest of you do?Any hints to make it bearable?I have lost about 15 pounds in the last couple of months and I'm still about tweny pounds over weight so I'm not concerned at this point about the weight loss. (I realize this is not good to loose weight in this manner)I'm so happy to find you all. Thanks for improving my spirits..judy

[Guest guest]

Thank you Chris. I copied them and am going to mail here a bunch of stuff. I

agree with you entirely. I too had bad things happen when I took some of these

drugs and had to go to the ER myself. I have JRA Stills. But she just wont

listen. However she did stop the Allegra herself and I don't' see why she wont

go and do that with her Celebrx. That's the one I had trouble with and quit. Now

I seem to be having trouble with Baxtra. LOL I just can't keep going on

anything!

I think she is stubborn at most. She believes her doc knows whats right. I also

went through a bad doctor and know that most of them don't know the first thing

on Stills. LOL But on RA they usually do. I think another thing is she is in a

lot of pain and maybe afraid to stop anything because her pain is less right

now. I guess she would rather take the pain and itch and have it hard to

breathe. I don't' know but I plan to call her today. I am also sending her out a

bunch of things you all were nice enough to send me. I will also say a lot of

prayers.

Hugs,

ette

wrote: ette,

I understand you can't get her to the ER, however, I just pulled up a couple of

things she may need to see. I have included the websites where I got this info.

Every drug has potential serious side effects, and not everyone will experience

them; however, it sounds as though she needs to realize that what she is

experiencing are serious side effects & need to be addressed.

Good luck,

Chris

greywolf70@...

***************************************************************

Taken from www.remicade.com

" Many people with heart failure should not take REMICADE; so, prior to treatment

you should discuss any heart condition with your doctor. Tell your doctor right

away if you develop new or worsening symptoms of heart failure (such as

shortness of breath or swelling of your feet).

There are reports of serious infections, including tuberculosis (TB) and sepsis.

Some of these infections have been fatal. Tell your doctor if you have had

recent or past exposure to people with TB. Your doctor will evaluate you for TB

and perform a skin test. If you have latent (inactive) TB your doctor should

begin TB treatment before you start REMICADE. If you are prone to or have a

history of infections, currently have one, or develop one while taking REMICADE,

tell your doctor right away. Also tell your doctor if you have lived in a region

where histoplasmosis is common or if you have or have had a disease that affects

the nervous system, or if you experience any numbness, tingling, or visual

disturbances.

There are also reports of serious infusion reactions with hives, difficulty

breathing, and low blood pressure. In clinical studies, some people experienced

the following common side effects: upper respiratory infections, headache,

nausea, cough, sinusitis or mild reactions to the infusion such as rash or itchy

skin. "

********************************************************************************\

*******

Taken from www.medicinenet.com

" Side effects such as low or high blood pressure, chest pain, difficulty

breathing, rash, itching, fever and chills may occur during or shortly after

administration. These reactions could indicate an allergy to the drug. They are

more common among patients who develop antibodies to infliximab and are less

likely to occur in patients who are taking drugs that suppress the immune

system, such as methotrexate. Infliximab should be discontinued if serious

reactions occur. "

[Guest guest]

Let us know what the doctors say. There was another great post yesteray

about seeing doctors in a completely different hospital area. Sounds like

good advice. Maybe if 2 docotors know eachother, they might have difficulty

not coming to the same conclusion.

To answer your question, yes they did the flexing and extending. The neck

timeline for this just might be shorter than back surgery. It did not hurt

or anything. And I was surprised I could do it. The strangest thing, I can

look left really well, looking right is about 30% harder. Probably muscels

issue in neck.

I could read my x-ray about the lines on the different x-rays being the same

like you could. Just can't tell. But since they say I have some mobility

left, the radiologist must be seeing some difference.

I posted some nutrition info on what I take every day to help bone growth.

I am not saying what I do on suppliments works at all. It is just what I

decided to do. Plus, I feel better about myself every time I take them.

Good Luck. I want you to figure out your pain source and get it FIXED!

Then go have fun.

_____

From: Mark [mailto:ristic@...]

Sent: Friday, October 24, 2003 8:58 PM

spinaldisorderssupport

Subject: To Chris

Thanks for the information Chris. I will go see other Doctors to look

at my x-rays and ct. Just have top know for sure whether the vertebrae

are joined or not. Sounds like you are fusing well in your neck. When

you took your 1 month x-ray, did they do a picture of bending your

head forword and backward to check for movement in the disks? It

seems like that would be a little early for that kind of test. I

don't think I did flexion and extension until the 3 month visit. But

when those disc spaces look the same, that is one indication of being

fused. I would think that you are going to do well if you feel better

already. Usually, from what I have been reading, people that have

fusions as a result of accidents rather than chronic long term pain,

have generally better outcomes. Unfortunately I happen to be in the

latter group. Mark

[Guest guest]

I hope you get better. Your issues in your neck are much greater than mine.

Shows you have a stronger constitution than me. I had one bad disk and

bone spurs rubbing my framial (Spelling) all the time with the loss in

spacing and I gave up after just one year.

I know exactly how the pain meds make you feel. You have to quit before

surgery for a while. I felt better off them. Yeah, the pain was sharp but

those meds just do something to you over a long period. I am kicking my

post surgery meds now. I have not slept well at all.

Goto the Dr. Jo web site. Take a look at some of the posts on minimally

evasive surgery. You can think about those along with a fusion surgery. I

wish the artificial disk option was avail in US for neck now. There was a

show on Discovery Health Network called " bionic Backs " that showed this

surgery. It will put fusions out someday. The guy in the show had 2 disks

replaced in back. A fusion would of probably had him out for a year. With

the artifical disks, they showed him working out in the gym with big weights

just 8 weeks after surgery. I have a neck fusion up high, and I can't do

upper body workouts for 3 months.

I am no doctor, but believe what your doctor said is true, disks don't heal.

The pain might go away if all your issues are just the fluid leaking. I had

a back disk blow when I was 21 in the gym. The doctor told me you can have

surgery or wait 15 years for the disk liquid to finnaly be gone. The liquid

causes lower back pain. I never did anything. And in about 10 years, the

pain stopped. My disk is degenerating and someday, I will deal with it when

I can't walk from it. Right now, no issues. Before Accident on neck, I

could run miles a day and never feel pain.

But again, I did not have and cord compression down there like you and I

have up in the neck. That is a different story.

Good Luck. And if you have surgery and have questions while you are sitting

at home, post em.

_____

From: farmer_392000 [mailto:vmeyer@...]

Sent: Saturday, October 25, 2003 6:53 AM

spinaldisorderssupport

Subject: To

Thanks for your reply!

a little about me ,well i live on a dairy farm in wisconsin and have

a wife Jonna of one year and a baby girl Molly almost 11 months old

now oh My name is vincent.

its hard for me to make things clear because i made a big mess of the

hole thing , i got hurt at work moveing a wall section on carts and

the cart kiked out on my end so i tried to stop the wall from falling

on me i had my hands over my head pushing as hard a i could then i

felt a sharp pain very hot . the farmer in me said youl get better

and my boss said youl get better no it didnt so i went to an

chyroprachter, he said go to the hospital the doctors took mri and

skeduled surgery in two weeks all to fast for me , so i thought one

more time give it time to heal , one year latter and still lotts of

pain numbness but heavy not the tingleing numbness.

some of the words on the report are c6c7c8 Extruded disk material

lies in the foramen nearly compleatly .the spinal cord is flattining

of the anterior and right side of the spinal cord,

witch the last doctor said will not heal on its own?

if you can understand that but i will go in and have it fixed its

just not working for me cant take pain pills for the rest of my life

41 is old but not to old i hope

thanks again Chris

and take care .

[Guest guest]

Dolly,

Don't be confused. Grins. Yeah, after I got the CI activated, I

compared the sounds I was getting through the hearing aid in the

non-implanted ear and through the processor in the implanted ear, and

realized that I was " getting the honest truth " with the CI and ditched

the hearing aid. No more hearing aid. No more ear mold. Ergo, no

more skin irritation. No more feedback. Today, I can now wear any

hat, scrunch any ski cap onto the ears and keep the earlobes warm in

-10 degree weather and *still hear* anything! .

Chris

On 1/20/06, Gayle Tiana Northcott <dolphing@...> wrote:

> Hi

>

> I am confused here. You said the ear molds gave you ear skin infection to the

point you wore hearing aid one ear while the other one heal, then the other one

get infected so while that one get healed you put the aid to the ear just

healed. In the end you got CI (after reading, pro & con, etc.) in both ears.

>

> Now the part I am confused, don't you still have to wear ear mold with CI?

>

> Thanks for any info you can tell me on the ear mold part.

>

> Dolly Dolphin

>

>

>

[Guest guest]

Thank you for replying.

Ohhhh, not to have to wear ear molds again sound so heavenly to me.

My ear mold in my left year (gave up wearing hearing aid in right ear long time

ago-the bad ear) drive me bonkers. For some reason it love to go further down

my ear on it own, laughing at me, while I pull it back up, cursing it. Mind

you it is a good exercise for my left arm/hand.

Dolly Dolphin

wrote:

Dolly,

Don't be confused. Grins. Yeah, after I got the CI activated, I

compared the sounds I was getting through the hearing aid in the

non-implanted ear and through the processor in the implanted ear, and

realized that I was " getting the honest truth " with the CI and ditched

the hearing aid. No more hearing aid. No more ear mold. Ergo, no

more skin irritation. No more feedback. Today, I can now wear any

hat, scrunch any ski cap onto the ears and keep the earlobes warm in

-10 degree weather and *still hear* anything! .

Chris

[Guest guest]

Hi. I am a lurker. I'm just starting to consider CI. Am profoundly deaf in both

ears, one for about 13 years and the other for about 2 years. I thought that

when you got a CI, you still had to wear a BTE, just without the earmold part of

it. Or a body aid/pager type of processor. Wouldn't the BTE still be in the way

of hats, etc? I can't stand the pager type of HA. I have one and only use it

when it is super important that I hear a little more than my BTEs, cause it is

more powerful. Otherwise the cord drives me crazy. Still trying to figure out

how all of the CI stuff works. Thanks.

Jane

Re: To Chris

Thank you for replying.

Ohhhh, not to have to wear ear molds again sound so heavenly to me.

My ear mold in my left year (gave up wearing hearing aid in right ear long

time ago-the bad ear) drive me bonkers. For some reason it love to go further

down my ear on it own, laughing at me, while I pull it back up, cursing it.

Mind you it is a good exercise for my left arm/hand.

Dolly Dolphin

wrote:

Dolly,

Don't be confused. Grins. Yeah, after I got the CI activated, I

compared the sounds I was getting through the hearing aid in the

non-implanted ear and through the processor in the implanted ear, and

realized that I was " getting the honest truth " with the CI and ditched

the hearing aid. No more hearing aid. No more ear mold. Ergo, no

more skin irritation. No more feedback. Today, I can now wear any

hat, scrunch any ski cap onto the ears and keep the earlobes warm in

-10 degree weather and *still hear* anything! .

Chris

[Guest guest]

Jane,

Welcome. Lurk no more!

Well, BTEs hang off your ears, yes, you have to be careful when

putting on hats or taking them off, but at least you don't have EAR

MOLDS that you have to mash into the ear canal when you put on the hat

(ouch!) -- and deal with feedback when the hat is too close to the

microphone. With the CI BTE, you don't have to worry about mashed in

earmolds, feedback, water in tubes. When it is very cold, I can cover

my ears totally with the ski hats, and I can *still hear* sounds

through the hat itself.

I'm sure that when you get your CI package, you will be getting both

the BWP (body worn processor) AND the BTE (behind the ear) thingies.

I have my BWP as a back up in case my BTE conks out or is lost

(fortunately hasn't happened yet!)...

Are you being considered for a CI?

Chris

On 1/21/06, Jane <dogsville@...> wrote:

> Hi. I am a lurker. I'm just starting to consider CI. Am profoundly deaf in

both ears, one for about 13 years and the other for about 2 years. I thought

that when you got a CI, you still had to wear a BTE, just without the earmold

part of it. Or a body aid/pager type of processor. Wouldn't the BTE still be in

the way of hats, etc? I can't stand the pager type of HA. I have one and only

use it when it is super important that I hear a little more than my BTEs, cause

it is more powerful. Otherwise the cord drives me crazy. Still trying to figure

out how all of the CI stuff works. Thanks.

> Jane

> Re: To Chris

>

>

> Thank you for replying.

> Ohhhh, not to have to wear ear molds again sound so heavenly to me.

>

> My ear mold in my left year (gave up wearing hearing aid in right ear long

time ago-the bad ear) drive me bonkers. For some reason it love to go further

down my ear on it own, laughing at me, while I pull it back up, cursing it.

Mind you it is a good exercise for my left arm/hand.

>

> Dolly Dolphin

>

> wrote:

>

> Dolly,

>

> Don't be confused. Grins. Yeah, after I got the CI activated, I

> compared the sounds I was getting through the hearing aid in the

> non-implanted ear and through the processor in the implanted ear, and

> realized that I was " getting the honest truth " with the CI and ditched

> the hearing aid. No more hearing aid. No more ear mold. Ergo, no

> more skin irritation. No more feedback. Today, I can now wear any

> hat, scrunch any ski cap onto the ears and keep the earlobes warm in

> -10 degree weather and *still hear* anything! .

>

> Chris

>

>

>

>

[Guest guest]

The Dr that I saw last month said he thought I was an excellent candidate, so I

have an appointment to meet with the CI team to get further evaluation, so I

don't really know yet where I am, or if my insurance will cover it.

Thanks,

Jane

Re: To Chris

>

>

> Thank you for replying.

> Ohhhh, not to have to wear ear molds again sound so heavenly to me.

>

> My ear mold in my left year (gave up wearing hearing aid in right ear long

time ago-the bad ear) drive me bonkers. For some reason it love to go further

down my ear on it own, laughing at me, while I pull it back up, cursing it.

Mind you it is a good exercise for my left arm/hand.

>

> Dolly Dolphin

>

> wrote:

>

> Dolly,

>

> Don't be confused. Grins. Yeah, after I got the CI activated, I

> compared the sounds I was getting through the hearing aid in the

> non-implanted ear and through the processor in the implanted ear, and

> realized that I was " getting the honest truth " with the CI and ditched

> the hearing aid. No more hearing aid. No more ear mold. Ergo, no

> more skin irritation. No more feedback. Today, I can now wear any

> hat, scrunch any ski cap onto the ears and keep the earlobes warm in

> -10 degree weather and *still hear* anything! .

>

> Chris

>

>

>

>

[Guest guest]

Hi Jane,

My name is Larry and I have a cochlear implant on both ears. I

am also totally blind as a result of Norries disease.

Although you don't need to wear earmolds with CI's, you still need to

wear processors which are securred to your head with a magnet. There is no

feedback with CI's, so you can wear a hat, cap, or scarf on your head.

Larry

Re: To Chris

>

>

> Thank you for replying.

> Ohhhh, not to have to wear ear molds again sound so heavenly to me.

>

> My ear mold in my left year (gave up wearing hearing aid in right ear

> long time ago-the bad ear) drive me bonkers. For some reason it love to

> go further down my ear on it own, laughing at me, while I pull it back up,

> cursing it. Mind you it is a good exercise for my left arm/hand.

>

> Dolly Dolphin

>

> wrote:

>

> Dolly,

>

> Don't be confused. Grins. Yeah, after I got the CI activated, I

> compared the sounds I was getting through the hearing aid in the

> non-implanted ear and through the processor in the implanted ear, and

> realized that I was " getting the honest truth " with the CI and ditched

> the hearing aid. No more hearing aid. No more ear mold. Ergo, no

> more skin irritation. No more feedback. Today, I can now wear any

> hat, scrunch any ski cap onto the ears and keep the earlobes warm in

> -10 degree weather and *still hear* anything! .

>

> Chris

>

>

>

>

[Guest guest]

I am very interested in hearing your story of how you took gel, felt

great, and then what happened after that temporary feeling? I don't

know if you read my original post, but I had a similar thing happen to

me. I was on gels for 4 days, stopped due to the crazy side effects,

and after I quit (took 5gms Testim each morning am Thurs, Fri, Sat,

Sun.....stopped Monday morn) Monday night, I felt really good from

about 5PM (still felt depressed and crappy all day until 5ish that

night) till I went to bed. Next day I woke up....depression again. In

addition, I couldn't sleep and was so bad for lack of sleep, I was

suicidal within a week. Eventually, I was diagnosed as manic

depressant and given antidepressants and sleeping pills, and to this

day I am still on AmbienCr, or I will not sleep but maybe an hour.

BTW, My most recent, and only, Estradiol test was 44 pg/ml on a range

of 2-50 pg/ml. After having read all the things I have read, I

theorize that starting the gel interrupted my HPTA, and also the

balance of E2 in my system, and it has never recovered. Thanks for

listening, and God Bless you.

Chris

Hey could I butt in here on your reply? If you don't mind.

Sounds to me like your hormones are all out of balance. Your E2

is away too high, this will make you crabby and not being able to sleep,

this happened to me. How did your Total T check out, could you post

them for us? Also a sleep disorder could also be connected to a sleep

disorder called 'sleep apnea.' Have you considered this? I know when

my Total T and E2 were out of balance I felt like shit myself. I have

been taking Testosterone shots for over 20 years but they never did check

my E2 for some reason. Finally had a complete blood work up and

my E2 was over the top, so I wasn't getting any benefits from the T

shots at all and was feeling bad. Phil was the one that got me to

checking the E2 which is SO important to a good balance. I finally

have mine under control pretty well and feeling better than I have

for a long time. Please give us your blood test and their ranges if

you have them. I hope you have had a complete blood work up!

I have tried other testosterone applications but have found out the

Testosterone CYP shots do much better for me. It will take a long

time to recover from High E2 I know from experience and Phil got

me taking Arimidex to get it down which it did in about a month and

a half.

Blessings,

Roy

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

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

From what I have learned about thyroid you low your Free T 3 should be up in the

high end of the range or at the top and your Free T4 should be in the middle.

The best place I have found to learn this is at this link.

http://www.stopthethyroidmadness.com/

The best way to tell is to take you Temp. 3 times a day and chart it. Read

this link.

http://www.drrind.com/tempgraph.asp#directions

I use this to take my Temp.

http://www.wilsonsthyroidsyndrome.com/Products/Thermometer.htm

If you have no libido or morning wood with problems keeping it up get your

Estradiol down. When my Estradiol is this high I have problems.

Phil

vaiisking1026 <vaiisking@...> wrote:

>

> I am very interested in hearing your story of how you took gel, felt

> great, and then what happened after that temporary feeling? I don't

> know if you read my original post, but I had a similar thing happen to

> me. I was on gels for 4 days, stopped due to the crazy side effects,

> and after I quit (took 5gms Testim each morning am Thurs, Fri, Sat,

> Sun.....stopped Monday morn) Monday night, I felt really good from

> about 5PM (still felt depressed and crappy all day until 5ish that

> night) till I went to bed. Next day I woke up....depression again. In

> addition, I couldn't sleep and was so bad for lack of sleep, I was

> suicidal within a week. Eventually, I was diagnosed as manic

> depressant and given antidepressants and sleeping pills, and to this

> day I am still on AmbienCr, or I will not sleep but maybe an hour.

> BTW, My most recent, and only, Estradiol test was 44 pg/ml on a range

> of 2-50 pg/ml. After having read all the things I have read, I

> theorize that starting the gel interrupted my HPTA, and also the

> balance of E2 in my system, and it has never recovered. Thanks for

> listening, and God Bless you.

>

> Chris

>

>

> Hey could I butt in here on your reply? If you don't mind.

>

> Sounds to me like your hormones are all out of balance. Your E2

> is away too high, this will make you crabby and not being able to

sleep,

> this happened to me. How did your Total T check out, could you post

> them for us? Also a sleep disorder could also be connected to a sleep

> disorder called 'sleep apnea.' Have you considered this? I know when

> my Total T and E2 were out of balance I felt like shit myself. I have

> been taking Testosterone shots for over 20 years but they never

did check

> my E2 for some reason. Finally had a complete blood work up and

> my E2 was over the top, so I wasn't getting any benefits from the T

> shots at all and was feeling bad. Phil was the one that got me to

> checking the E2 which is SO important to a good balance. I finally

> have mine under control pretty well and feeling better than I have

> for a long time. Please give us your blood test and their ranges if

> you have them. I hope you have had a complete blood work up!

> I have tried other testosterone applications but have found out the

> Testosterone CYP shots do much better for me. It will take a long

> time to recover from High E2 I know from experience and Phil got

> me taking Arimidex to get it down which it did in about a month and

> a half.

> Blessings,

> Roy

>

>

Hey, Roy. Here are some of my most recent tests.

Thyroid Panel 3

T4(thyroxine) 7.7 ug/dl 4.5-12.0 ug/dl

T3 uptake 35.0 24-45 %

free thyroxine index 2.7 1.1-4.4

TSH .872 0.350-5.500 uIU/ml

Cortisol Level 15 ug/dl adult am 4-22 pm 3-17

(test was taken 2:40pm)

Free T3 2.8 2.3-4.2 pg/ml

Free T4 1.19 0.71-1.85 ng/dl

Total Testosterone 214 280-1070 ng/dl

Estradiol test was 44 pg/ml on a range

> of 2-50 pg/ml.

And Prior to these I had these tests months ago:

The first test was taken on 11/23/2005

Serum Testosterone 305 ng/dl

Free Testosterone 15.07 ng/dl

%free Testosterone 4.94 % (high flag)

Amenorrhea Profile

LH 3.9 mIU/mL

FSH 2.0 mIU/mL

Prolactin 8.2 ng/mL

Then the next test was taken on 12/13/05

Serum Testosterone 433 ng/dl

Free Testosterone 20.52 ng/dl

%free Testosterone 4.74 % (high flag again )

TSH 1.193 uIU/mL

Prolactin 7.0 ng/mL

I can't really make heads or tails of them...

Hope you can..

GodBless,

Chris