Re: how to help husband understand?

April 6, 2001

Dear ,

I know you want your husband to understand. You keep telling him all you are learning, and either he does not hear you, or does not agree with your conclusions. Would it help if you told him that after RAI one has to take medication for life, and has much worse symptoms than before? If he cannot understand this, is it possible for you to let go of the need for him to agree with you? This is YOUR health you are talking about, and neither the doctors, or your husband, live in your body. You can switch doctors--but we (usually) don't want to switch husbands! So, just stick to your own truth, and invite your husband to accompany you on your journey. Sometimes (often, actually), married couples don't agree, and just have to "agree to disagree." We do, however, wish to be heard by our spouse, even if he doesn't agree with us. Try this technique. Tell him: "I need for you to understand what I'm saying to you about my health. You don't have to agree with me, just agree to listen." Then tell him what your beliefs are, and what you are feeling, and ask him to repeat what he has heard. Then, you can ask him to state his beliefs and feelings, and can reflect back to him what he has said. After both of you feel heard and understood, you can agree to disagree.

Just remember--it is your body and your health, so your treatment is your decision. It's nice if others support our choices, but even if they don't, we owe it to ourselves to follow our own truths. I wouldn't listen to my idiot endo when he pushed RAI, and I'm SO HAPPY I didn't, as I have been cured for almost 4 years now. My health care decisions were my own--I didn't consult my husband at all, as I would have to live with the results of any treatment decisions, and health is one of our most important possessions.

Good luck,

AntJoan

April 6, 2001

Hi : It's a common problem for people with Grave's disease to be

misunderstood by their spouses, family members, friends.... Part of the problem

is that without severe eye problems, you don't 'look' any different, so how can

there be a problem? If your husband is interested in reading about the side

effects of RAI, including the long-term genetic effects and the potential

increase in several forms of cancer, there are many research papers available he

can read. Ask him if he's really willing to sacrifice his life with you on a

based on another human's (doctor) opinion.

There's a website that has a very good letter written by a woman to her husband

about her Grave's disease and what it means to her and to her relationship with

him. I thought I had it bookmarked, but can't find it. Maybe someone else has

the URL.

Take care,

Me.

P.S. If your husband IS interested in knowing more, you can write me privately

and I'll be happy to provide enough information to keep him reading for weeks.

Elaine can provide much more as well.

April 6, 2001

Marcia,

If you do find the website you mentioned below, it would be great if you can post it. I believe it will come in handle for many who are experience something similar to what Pat is going through.

Thanks,

Marinda

MarindaAs of 03/31/2001: 37 Weeks 'Til Graduation!!!Between Tomorrow's Dreams And Yesterday's Regrets, Are Today's Opportunities.

Re: how to help husband understand?

Hi : It's a common problem for people with Grave's disease to bemisunderstood by their spouses, family members, friends.... Part of the problemis that without severe eye problems, you don't 'look' any different, so how canthere be a problem? If your husband is interested in reading about the sideeffects of RAI, including the long-term genetic effects and the potentialincrease in several forms of cancer, there are many research papers available hecan read. Ask him if he's really willing to sacrifice his life with you on abased on another human's (doctor) opinion.There's a website that has a very good letter written by a woman to her husbandabout her Grave's disease and what it means to her and to her relationship withhim. I thought I had it bookmarked, but can't find it. Maybe someone else hasthe URL.Take care,Me.P.S. If your husband IS interested in knowing more, you can write me privatelyand I'll be happy to provide enough information to keep him reading for weeks.Elaine can provide much more as well.

April 6, 2001

Thanks AntJoan. I appreciate your wisdom. Even

though we have been married

30 years, and I have supported him with his

heart disease (cooking healthy,

nursing him through quintuple bypass surgery,

praying for his recovery, ...) this

is QUITE difficult. I DO have eye symptoms ---

including bulging/protrusion. I think

part of this relates to his hating to see me

looking like this. And of course now it

is taking it's toll on me, in just the 2 short

months of my diagnosis!

I am so glad for you all being here.

April 6, 2001

Antjoan:

I have read your posts for several months and want to thank you for staying with this board and giving your support and kindness. You always have great responses to people and offer hope to the rest of us that we will one day be cured also! I only started my journey last November with Graves. Can I ask you if you cured yourself using 's supplement list? And if so what other changes did you make in your life? Did you smoke? I sure you've probably answered this before and I've just missed it. I'm sorry to ask again. I'm currently taking 20 mg Tap daily (lowered from 30 mg myself, due to feeling hypo.), 60 mg propranalol and about 3/4 ths of s supplement list, working up slowing and as budget allows.

Any advise would be appreciated. Again thanks for making yourself available to all of us.

Retta

-----Original Message-----From: AntJoan@... [mailto:AntJoan@...]Sent: Friday, April 06, 2001 12:35 PMhyperthyroidism Subject: Re: how to help husband understand?Dear , I know you want your husband to understand. You keep telling him all you are learning, and either he does not hear you, or does not agree with your conclusions. Would it help if you told him that after RAI one has to take medication for life, and has much worse symptoms than before? If he cannot understand this, is it possible for you to let go of the need for him to agree with you? This is YOUR health you are talking about, and neither the doctors, or your husband, live in your body. You can switch doctors--but we (usually) don't want to switch husbands! So, just stick to your own truth, and invite your husband to accompany you on your journey. Sometimes (often, actually), married couples don't agree, and just have to "agree to disagree." We do, however, wish to be heard by our spouse, even if he doesn't agree with us. Try this technique. Tell him: "I need for you to understand what I'm saying to you about my health. You don't have to agree with me, just agree to listen." Then tell him what your beliefs are, and what you are feeling, and ask him to repeat what he has heard. Then, you can ask him to state his beliefs and feelings, and can reflect back to him what he has said. After both of you feel heard and understood, you can agree to disagree. Just remember--it is your body and your health, so your treatment is your decision. It's nice if others support our choices, but even if they don't, we owe it to ourselves to follow our own truths. I wouldn't listen to my idiot endo when he pushed RAI, and I'm SO HAPPY I didn't, as I have been cured for almost 4 years now. My health care decisions were my own--I didn't consult my husband at all, as I would have to live with the results of any treatment decisions, and health is one of our most important possessions. Good luck, AntJoan

April 6, 2001

Hi : Aol has a Hypothyroid message board. You should have your

husband read some of the messages on that board - then he'll understand why

you are trying to save your thyroid. Joyce

April 6, 2001

, it's easy to understand the way your husband's thinking. We were all raised to believe that doctors know best and that their training qualifies them to give the ultimate word. It's only in the past few years that I've come to genuinely question that assumption. It's not that I think doctors routinely don't know what they're talking about. In their area of expertise they can usually give an educated guess, where a lay-person would have no earthly idea about what needed to be done. I do think, however, that a person who researches a problem enough can also make an educated guess. That's really all medicine is. I don't hold that fact against doctors, I just get annoyed when one holds onto their ideas when I know that another route might work better with a less-invasive approach.

Donna

http://trak.to/life

how to help husband understand?

My husband and I had a big blowup last night because I told him of my trying for a 3rd endo. He just blurted out, "I hope you know what you are doing after all 2 docs have wanted you to do the same thing!" He cannot fathom the idea I will search until I find an endo who will support what I want to do. He doesn't understand my reluctance to take this RAI treatment or a thyroidectomy. He is concerned that I need to take these docs' advice and move on from the drugs --- EVEN THOUGH PTU is getting me back to anormal range of thyroid readings! How can I help him understand? I have kept him in the know since the very beginning --- letting him know what I am reading, learning, discussing, my thoughts on the 3 treatments. As much as he tells me he wants to know. I told him I believe he is NOT listening to me whenI voice my concerns.Any ideas are welcome. Thanks,

April 6, 2001

Good call, AntJoan.

Donna

http://trak.to/life

Re: how to help husband understand?

Dear , I know you want your husband to understand. You keep telling him all you are learning, and either he does not hear you, or does not agree with your conclusions. Would it help if you told him that after RAI one has to take medication for life, and has much worse symptoms than before? If he cannot understand this, is it possible for you to let go of the need for him to agree with you? This is YOUR health you are talking about, and neither the doctors, or your husband, live in your body. You can switch doctors--but we (usually) don't want to switch husbands! So, just stick to your own truth, and invite your husband to accompany you on your journey. Sometimes (often, actually), married couples don't agree, and just have to "agree to disagree." We do, however, wish to be heard by our spouse, even if he doesn't agree with us. Try this technique. Tell him: "I need for you to understand what I'm saying to you about my health. You don't have to agree with me, just agree to listen." Then tell him what your beliefs are, and what you are feeling, and ask him to repeat what he has heard. Then, you can ask him to state his beliefs and feelings, and can reflect back to him what he has said. After both of you feel heard and understood, you can agree to disagree. Just remember--it is your body and your health, so your treatment is your decision. It's nice if others support our choices, but even if they don't, we owe it to ourselves to follow our own truths. I wouldn't listen to my idiot endo when he pushed RAI, and I'm SO HAPPY I didn't, as I have been cured for almost 4 years now. My health care decisions were my own--I didn't consult my husband at all, as I would have to live with the results of any treatment decisions, and health is one of our most important possessions. Good luck, AntJoan

April 6, 2001

Hi Pat,

I've just reread this e-mail... I meant to reply to your question, but ended

up just ranting on about my own experience, but maybe that's useful I don't

know. I'll post it anyway! All the best.

I had similar reactions from friends of mine. With them, I think part of

the problem was that they just wanted me to shut up!!

I was learning so much about endocrinology, about GRaves' Disease, about the

faults of the conventional treatments, the seeming conspiracy that lies

behind pushing RAI and surgery on us all - SO MUCH INFORMATION! that I

needed to talk it through with them. I was also so angry about how I felt I

was being treated by the medical community, with several misdiagnosis and

stop start treatments - that I WAS (quite rightly!) moaning about doctors

after appointments etc.

Even when I wasn't moaning, just discussing interesting facts that I had

uncovered about the whole thing, my friends didn't understand and because

the topic related to my being, feeling and looking ill, my friends just

heard it all as one long great big whinge and they wanted to " get on with

life and have fun " - no crime in that, I can see their point of view but I

just wanted them to see mine too.

I had to ask myself if I would find it interesting and supportable if the

boot was on the other foot. Would I be able to follow the information and

lend my support against the towering tyranny of the medical profession, if a

friend of mine was suffering from GD ??(and I had no sign of the illness

myself).

I have to admit, it IS an enormous body of information to wade through, to

get to the point where you can confidently and independently support your

friend or spouse in their desision. BUT, not to blow my own trumpet, I

think that I HAVE listened and supported friends in this respect with

various illnesses.

Part of my dissappointment at not finding myself listened to and supported

was that it is natural for me to do this for my friends - so there is a kind

of double betrayal going on.

I also KNOW that part of the problem is that when I was hyper, and suffering

only slightly from eye problems; the changes in my manner, in my appearance

and in how much my eyes protruded, particularly when frustrated or angry

(two things I invariably was after a docs. appointment!) - all of this

conspired against me as I appeared to be slightly insane! Couple this with

the traditional relationship most people have with the medical profession

it: " bow down and worship their lifesaving wisdom " - and you have a

situation where people will find it hard, no matter how much they like and

love you, to support your decision as you seem to be rather suspect in your

appearance and in your rapid thought patterns.

Even I found it hard during that period to support my own decision! Part of

the " deal " of my continuing use of ATDs, was that I actually go to the RAI

specialist in the nuclear medicene department so I would really understand

my options. It was SO tempting to give in, even though I had already found

this site and even though I knew I'd be on pills for life if I did go ahead

with it. Partly, the temptation to have RAI, was so that the discussion

would be over, the doubts I had about my own opinion verses the doctors and

the implications from some of my friends that I was being stubborn, selfish

and awkward in refusing treatment - all that would be over. Then, even if I

got even sicker afterward, at least no one would be able to accuse me of

being difficult or bringing my current situation on myself!

I am SO grateful now that I stuck to my guns. NOBODY medical, not the GP,

the Specialist or the super RAI specialist freely admitted to me that there

were any complications with RAI, but when I " cross examined " them, they all

either shrugged that they " didn't know anything about that " or, the more

specialised they were, came up with the same info I had about increased

problems with your eyes (the thing that worries me the most), not to

mention, weight gain, other serious body changes, and increased risk of

cancers here there and everywhere.

Friends are very different from spouses, but at the time I was so upset by

what I felt to be rejection that I would wickedly and visiously think the

unthinkable and on getting unsupportive comments that started with " what you

should do is.... " and " listen to the docs. " etc I would silently fume on the

inside and think " if you know so much about it, you have a go at dealing

with being hyper, I wish this on you!! " (very very naughty! not like me at

all, I never got cross enough to say it out loud, but wonder if that might

not have been a good idea!).

What happened in the end? I simply stopped talking to my friends about this

stuff and did what I needed to. I felt they were offering me judgement

instead of support, so I withdrew from them, or rather withdrew from seeking

their affirmation. In addition, I no longer allowed them the luxury of

giving me unsolicited advice about a subject they do not understand. Then I

was physically removed from these friends as I had to go to England for six

months due to my Dad's ill health - but that's a whole other story.

Eventually, I accepted that people did not give me support because they were

not equipped to understand what was going on for me and that MOST of their

comments came from a genuine concern for me (though some of their comments

seemed to come from their frustration at my " willfull gloom " ). 'Course,

dealing with a partner is very different from dealing with friends. With

some of my closer friends, I gave them printed information I'd got from this

site or the net to read, but they never did. I guess it is a big ask to get

people to get their heads around such a big subject.

I remember one friend suggesting that I should not be playing around " chat

rooms " and internet sites talking to " unqualified people " , that I should

just take the treatment the doctors were offering. She and I simply didn't

speak for about 4 months after that! I still can't talk to her about any of

this tuff cos she simply can't listen for long enough to absorb the

information I need to impart, to support my course of action!

That's enough ranting from me!

Stick to your guns Pat! Can you imagine how outraged you would feel if you

did have RAI, got worse, suffered double vision heavens knows what else and

your husband turned around and said " I always said, you should never have

had that RAI thingy " ! - imagining a similar senario, helped me stick to my

guns!

Cheerio!

DAWN ROSE

>From: " DONNA & JERRY ROBERTS " <roberts5@...>

>Reply-hyperthyroidism

><hyperthyroidism >

>Subject: Re: how to help husband understand?

>Date: Fri, 6 Apr 2001 21:02:07 -0400

>

>, it's easy to understand the way your husband's thinking. We were

>all raised to believe that doctors know best and that their training

>qualifies them to give the ultimate word. It's only in the past few years

>that I've come to genuinely question that assumption. It's not that I

>think doctors routinely don't know what they're talking about. In their

>area of expertise they can usually give an educated guess, where a

>lay-person would have no earthly idea about what needed to be done. I do

>think, however, that a person who researches a problem enough can also make

>an educated guess. That's really all medicine is. I don't hold that fact

>against doctors, I just get annoyed when one holds onto their ideas when I

>know that another route might work better with a less-invasive approach.

>

>Donna

>http://trak.to/life

>

> how to help husband understand?

>

> My husband and I had a big blowup last night because I told him of my

> trying for a 3rd endo. He just blurted out, " I hope you know what you

> are doing after all 2 docs have wanted you to do the same thing! " He

> cannot fathom the idea I will search until I find an endo who will

> support what I want to do.

>

> He doesn't understand my reluctance to take this RAI treatment or a

> thyroidectomy. He is concerned that I need to take these docs' advice

> and move on from the drugs --- EVEN THOUGH PTU is getting me back to a

> normal range of thyroid readings!

>

> How can I help him understand? I have kept him in the know since the

> very beginning --- letting him know what I am reading, learning,

> discussing, my thoughts on the 3 treatments. As much as he tells me

> he wants to know. I told him I believe he is NOT listening to me when

> I voice my concerns.

>

> Any ideas are welcome.

>

> Thanks,

>

April 7, 2001

What is that URL for the AOL message board for thyroid disease?

There is also one on about.com, but it isn't very good although they

have lots of sites to visit.

> Hi : Aol has a Hypothyroid message board. You should have

your

> husband read some of the messages on that board - then he'll

understand why

> you are trying to save your thyroid. Joyce

April 7, 2001

In a message dated 4/6/01 2:29:07 PM Eastern Daylight Time, laurettamcwilliams@... writes:

I'm currently taking 20 mg Tap daily (lowered from 30 mg myself, due to feeling hypo.),

Dear Retta,

Good for you for lowering your dose! As older members of this board know, I cured myself before this group even got started, and "met" through a letter in a health publication where he outreached to fellow Graves sufferers prior to starting the group. When I got sick, I took stock of any new supplements or other changes I had added recently, and stopped them, including a new multi I was taking, Siberian Ginseng and Progest. I also went for acupuncture and started eating more tofu and broccoli. I also took Tapezole and Atenol, lowering my dose of Tap as I would start to put on a few pounds. I would make the endo do bloodwork as soon as I started feeling hypo, to confirm that it was safe for me to lower the dose. I took control of my illness as soon as I started feeling sick, although it took me a few months to get diagnosed properly. I think the sooner one starts to rebalance oneself, the less complications develop and so the sooner one gets well.

Those who have been sick longer probably will take longer to get well, and it may be less straightforward than my path was. Also, as I said recently, all of our illnesses are different, and others may have more complicating factors than I did. If I ever get sick again, the information and support on this board will be there for me, I know. We all support each other.

Best regards,

AntJoan

April 7, 2001

Dawn Rose all information is useful! Actually I was laughing quite a

few times at some of your comments. Particularly the one about

not playing around in " chat rooms " and internet sites talking to

" unqualified people " ! Boy did that one get to me! It was almost word

for word one of my husband's comments. And here I am telling him

how much I have learned from the various literatures from NGDF,

Thyroid Organization of America, different medical sites. And that I AM

one of those people! You gotta laugh at what we people say at times.

P

April 7, 2001

Hi, Joyce,

Where is the AOL hypothyroid bb, please? You probably have it in Fav Places

now but do you remember how to get there?

Thanks,

Fran

Re: how to help husband understand?

>Hi : Aol has a Hypothyroid message board. You should have your

>husband read some of the messages on that board - then he'll understand why

>you are trying to save your thyroid. Joyce

>

April 9, 2001

I think I have a copy of that letter at home, it will have the web address

at the bottom. I'll look for it tonight. Mona

Re: how to help husband understand?

Marcia,

If you do find the website you mentioned below, it would be great if you can

post it. I believe it will come in handle for many who are experience

something similar to what Pat is going through.

Thanks,

Marinda

As of 03/31/2001: 37 Weeks 'Til Graduation!!!

Between Tomorrow's Dreams And Yesterday's Regrets, Are Today's

Opportunities.

Re: how to help husband understand?

Hi : It's a common problem for people with Grave's disease to be

misunderstood by their spouses, family members, friends.... Part of the

problem

is that without severe eye problems, you don't 'look' any different, so how

can

there be a problem? If your husband is interested in reading about the side

effects of RAI, including the long-term genetic effects and the potential

increase in several forms of cancer, there are many research papers

available he

can read. Ask him if he's really willing to sacrifice his life with you on

a

based on another human's (doctor) opinion.

There's a website that has a very good letter written by a woman to her

husband

about her Grave's disease and what it means to her and to her relationship

with

him. I thought I had it bookmarked, but can't find it. Maybe someone else

has

the URL.

Take care,

Me.

P.S. If your husband IS interested in knowing more, you can write me

privately

and I'll be happy to provide enough information to keep him reading for

weeks.

Elaine can provide much more as well.

April 9, 2001

Antjoan & All:

Thanks for you reply Antjoan. After 8 weeks on the lower dose (20 mg Tap) hypo symptoms are gone. However the eye involvement seems to be worse (slight bulging and very red and watery eyes) I'm still able to wear my contacts so, the bulging must not be too bad. The eye problems had all but gone away on the 30 mg tap. Heart rate is staying around 74 and blood work all within normal, with tsh starting to move (1.8). I think I'm okay as far as the dose for now. The eye symptoms worry me though. Could this be the start of TED or just Grave eye involvement. Eye Doc visit in Feb. said no TED at that time. Any supplements that I should increase or change ?

Thanks,

Retta

-----Original Message-----From: AntJoan@... [mailto:AntJoan@...]Sent: Saturday, April 07, 2001 11:20 AMhyperthyroidism Subject: Re: how to help husband understand?In a message dated 4/6/01 2:29:07 PM Eastern Daylight Time, laurettamcwilliams@... writes:

I'm currently taking 20 mg Tap daily (lowered from 30 mg myself, due to feeling hypo.), Dear Retta, Good for you for lowering your dose! As older members of this board know, I cured myself before this group even got started, and "met" through a letter in a health publication where he outreached to fellow Graves sufferers prior to starting the group. When I got sick, I took stock of any new supplements or other changes I had added recently, and stopped them, including a new multi I was taking, Siberian Ginseng and Progest. I also went for acupuncture and started eating more tofu and broccoli. I also took Tapezole and Atenol, lowering my dose of Tap as I would start to put on a few pounds. I would make the endo do bloodwork as soon as I started feeling hypo, to confirm that it was safe for me to lower the dose. I took control of my illness as soon as I started feeling sick, although it took me a few months to get diagnosed properly. I think the sooner one starts to rebalance oneself, the less complications develop and so the sooner one gets well. Those who have been sick longer probably will take longer to get well, and it may be less straightforward than my path was. Also, as I said recently, all of our illnesses are different, and others may have more complicating factors than I did. If I ever get sick again, the information and support on this board will be there for me, I know. We all support each other. Best regards, AntJoan

April 9, 2001

Let him know that Endo's are more knowledgeable about diabetes than thyroid

disease. Just because a person has an MD behind their name does not make

them an expert. Remember someone has to graduate at the top the class and

at the bottom of the class. We don't know which part of the class we're

dealing with....and it behooves us to become as knowledgeable as possible.

Also remind him that it has been proven that you could become CONSIDERABLY

worse if you have RAI. How would he feel if he pushed you into this method

of treatment only to see you get much worse!!?? When did he become the

expert? Does he trust his car/truck with just any mechanic? Aren't all

mechanics the same? Remind him that it takes the body time to recuperate

and that many, many people have been on meds for a long time (one friend has

been on PTU for 21 years) before they go into remission.

Also remind him that the medical community kills thousands of patients a

year and that we are wiser to listen to our intuition and to talk with

others who have experienced similar problems. A quick fix is not in the

vocabulary for thyroid disease patients. Tell him if he loves you he will

have to work with you and be patient so that you can work toward the road

of recovery instead of disaster that it is in both your interests.

Remind him if you have surgery or RAI you WILL CONTINUE ON MEDS FOR THE REST

OF YOUR LIFE!! You have a chance for remission while on PTU not so with

RAI/surgery. Perhaps he should visit a hypo thyroid bulletin board and read

about how miserable people are.

Also STRESS PLAYS AN IMPORTANT FACTOR IN GRAVES. Lack of support from him

is causing you stress. Let him know you know he's concerned but you're the

one with the disease and you want what is best for your health. If you

think he's not listening back off for a while. Sometimes we're so concerned

about our health we talk about it all the time and those around us get tired

of listening...it's hard for them to relate. Keep listening to your

intuition, stay connected to this bulletin board, and seek another Endo if

you're not happy. Remember you DO NOT HAVE TO HAVE RAI or SURGERY

regardless of what the docs tell you. They will try to cut off your meds

(make sure you always have extra) so go to another doctor. Wishing you much

luck and prayers, Mona

how to help husband understand?

My husband and I had a big blowup last night because I told him of my

trying for a 3rd endo. He just blurted out, " I hope you know what you

are doing after all 2 docs have wanted you to do the same thing! " He

cannot fathom the idea I will search until I find an endo who will

support what I want to do.

He doesn't understand my reluctance to take this RAI treatment or a

thyroidectomy. He is concerned that I need to take these docs' advice

and move on from the drugs --- EVEN THOUGH PTU is getting me back to a

normal range of thyroid readings!

How can I help him understand? I have kept him in the know since the

very beginning --- letting him know what I am reading, learning,

discussing, my thoughts on the 3 treatments. As much as he tells me

he wants to know. I told him I believe he is NOT listening to me when

I voice my concerns.

Any ideas are welcome.

Thanks,

April 9, 2001

Good info Dawn!! You're absolutely right about people wanting us to shut

up. Now I don't say anything unless asked and even then it's limited.

Interesting though, people recently diagnosed come running to me!! Mona