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1 20th March 03:24
nrclifton
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Posts: 1
Default Hi all, ? about supportive family members/ spouse (diet heart lupus disability)


It has been a while for me again been doing just icky. Some of you may
remember that I have had recent issues with my rhuemy in the last year
since filing for disability - he stopped listening and started
seriously downplaying my symptoms?

My fault I should have switched like my intution said... .but
disability professional suggessted otherwise...

My husband went with me for the first time to my dr visit. I told him
I thought this was for our benefit and for the drs. I explained (or so
I thought) that given this change in the doctor it would help my
health care by my husband explaining my symptoms from his point of
view and how they affect our lives. He says to people we know that
most days he feels like he can't touch me without my giving a sign of
pain especially in my spine....

Well, what he did was not the above, instead he decided what would be
most helpful is if he told the doctor that I drink several cokes a day
and like chocoloate and said nothing else of what goes on at home.
What shocked me about this is that, he has to take up so much slack
for me at home and he didn't talk about it?

I admit (and did in fact share this with my rhuemy on my last visit)
that cokes and chocolate are not good for me or my health I know this.
According to my Dr. or Oncology and Nurtrional Science that is very
common with people who have chronic illness and pain.

The point is I have no problem with my husband bringing this up, if it
is important to him then he should, BUT WHAT IS DRIVING ME CRAZY AND
HURTS BEYOND BELIEF is that he said nothing of all the symptoms and
negative impact my illnesses have on our lives????????

It was like I was sitting in a good old boy meeting and I was a child
being discussed. They (the dr and my husband) that if I stopped
drinking cokes and eating sugar, I would be essentially cured? My
symptoms to include extreme shortness of breath and mouth ulcers as
well as many others were dismissed.
They also decided that the Dr. of Oncology and Nutrion did not know
what he was talking about and that I should instead follow the Atkins
diet instead of the diet perscribed to me by the nutrional specialist.

Some of you may feel that I am over reacting but I am crushed by this.
I felt betrayed by the one person that could help this disability
feared dr see the light - failed completely in his task

My heart is broken and I feel like I have been sent back to start with
my health care. There is obviously more to this story but the
highlights have been covered.

Have any of you experienced this with your spouse or dr?

One more thing, my dr. actually made fun of lupus support groups and
said they were not helpful????????

Confused and sad.
Nicole C. in Austin
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2 20th March 03:25
cindy
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Posts: 1
Default Hi all, ? about supportive family members/ spouse


Hugs Nicole, and I know that won't help....
Cindy
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3 20th March 03:25
jdwat
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Posts: 1
Default Hi all, ? about supportive family members/ spouse (disability)


(((((((((((((((((((((Nicole))))))))))))))))))))))) )


IMO, this quack of a doc will be of little use to you when it comes to
your disability application. In fact, he'll probably hurt your chances
with his attitude! Also, IMO, if he's so dead-set against support
groups, it's probably because he's an alcoholic or addict in denial.
(That was more for your amu*****t than a judgement, BTW. )

My hope is that your husband will see how badly you need his support.
It's hard for "healthy" people to comprehend just what all we go
through. I don't think he means to blame everything on coke &
chocolate, but I know it feels like he is doing just that.

You need a doctor that is concerned for your overall well being & a good
doctor can explain your condition to your husband when you need him/her
to. A doctor may say something like: "Although, Nicole may eat too much
chocolate & drink too much pop & although it is true that she may feel
much better if she were to limit or cease her consumption of these
products, her disease cannot be blamed on said products or we would have
an epidemic equal to that of the plague." : )

Hang tough, hon!

Hugs,
Maggie
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4 20th March 03:25
sharon
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Posts: 1
Default Hi all, ? about supportive family members/ spouse (down eye tongue)


lol Bruce! (((Nicole))) I too think maybe hubby got tongue tied at the
docs, and didn't mean to make it seem he thought it was all about the
chocolate and cokes, but I wasn't an eye-witness, just through reading
the account it sounds to me like this is true. I agree completely with
Bruce that you need a new MD, and as soon as possible! When I found the
right doc, I didn't need my hubby to defend me. They've never even met,
and I'm getting the best care I've ever had. Good luck finding a new
doc! It's one of the hardest things I had to do, but now that it's
over, I am so glad I pursued it despite all the doubts from docs and
loved ones, including myself.

Reassuring hugs for you,
-Sharon


--
"Don't make me come down there..."
-God
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5 23rd March 14:44
healthwriter101
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Posts: 1
Default Hi all, ? about supportive family members/ spouse (diet heart lupus arthritis disability)


In some ways, this seems to me a typical male-female dynamic. Oftentimes, when
couples go together for counseling, the women wants to talk about the
emotional/couples issues while the man wants to dive right into tactical issues
because he wants to "fix" things. For instance, studies show that spouses of
men with arthritis love to go to cognitive behavorial counseling sessions with
them. However, the men hate to have their spouses go - because the men think
the women take up too much time talking about the emotional stuff as opposed to
specific strategies for dealing with the condition. But the upshot is the
studies also show that these same men, who are reticent to have their wives
accompany them, have more benefits from the cognitive behavorial sessions when
their wives go with them. If you really want to have your husband talk about
the household issues brought up by your condition, you may want to think about
going to someone who is better trained and attuned to dealing with this stuff,
rather than your medical doctor.


<<
It has been a while for me again been doing just icky. Some of you may
remember that I have had recent issues with my rhuemy in the last year
since filing for disability - he stopped listening and started
seriously downplaying my symptoms?

My fault I should have switched like my intution said... .but
disability professional suggessted otherwise...

My husband went with me for the first time to my dr visit. I told him
I thought this was for our benefit and for the drs. I explained (or so
I thought) that given this change in the doctor it would help my
health care by my husband explaining my symptoms from his point of
view and how they affect our lives. He says to people we know that
most days he feels like he can't touch me without my giving a sign of
pain especially in my spine....

Well, what he did was not the above, instead he decided what would be
most helpful is if he told the doctor that I drink several cokes a day
and like chocoloate and said nothing else of what goes on at home.
What shocked me about this is that, he has to take up so much slack
for me at home and he didn't talk about it?

I admit (and did in fact share this with my rhuemy on my last visit)
that cokes and chocolate are not good for me or my health I know this.
According to my Dr. or Oncology and Nurtrional Science that is very
common with people who have chronic illness and pain.

The point is I have no problem with my husband bringing this up, if it
is important to him then he should, BUT WHAT IS DRIVING ME CRAZY AND
HURTS BEYOND BELIEF is that he said nothing of all the symptoms and
negative impact my illnesses have on our lives????????

It was like I was sitting in a good old boy meeting and I was a child
being discussed. They (the dr and my husband) that if I stopped
drinking cokes and eating sugar, I would be essentially cured? My
symptoms to include extreme shortness of breath and mouth ulcers as
well as many others were dismissed.
They also decided that the Dr. of Oncology and Nutrion did not know
what he was talking about and that I should instead follow the Atkins
diet instead of the diet perscribed to me by the nutrional specialist.

Some of you may feel that I am over reacting but I am crushed by this.
I felt betrayed by the one person that could help this disability
feared dr see the light - failed completely in his task

My heart is broken and I feel like I have been sent back to start with
my health care. There is obviously more to this story but the
highlights have been covered.

Have any of you experienced this with your spouse or dr?

One more thing, my dr. actually made fun of lupus support groups and
said they were not helpful????????

Confused and sad.
Nicole C. in Austin
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6 23rd March 14:44
bj
External User
 
Posts: 1
Default Hi all, ? about supportive family members/ spouse


Hi Nicole,
You are not over reacting at all. I would feel the same way. I doubt your
husband even realized what he was doing. The conversation with the doctor
went a certain way and he forgot or didn't think to mention the most
important things. Perhaps this will help you make the decision to change
doctors. Follow your intuition. I am sorry you have been so hurt by this.
BJ-Sk. Canada
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7 23rd March 14:44
nrclifton
External User
 
Posts: 1
Default Hi all, ? about supportive family members/ spouse (weight)


If you really want to have your husband talk about


Hi I appreciate your insight however, i do feel I need to clarify one
point. I did not want my husband to discuss his household chores
rather I wanted him to discuss my symptoms that directly tie into him
having to carry more of the weight in this area.

Nicole
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8 23rd March 14:45
timothy luders
External User
 
Posts: 1
Default Hi all, ? about supportive family members/ spouse


Hi, Nicole

50 lashes with a wet noodle for hubby. Sounds like you have discussed
your disappointment with him. Good.

It's time for a new doc.

I have been to only a handful of appointments with Linda over the last
23 years. She has rarely needed my support at them. This may be why:

Appointment for 4:00 pm, admitted to exam room at 5, Doctor comes in at
5:30. I know this doesn't look good. Doctor has intern with him. Case is
discussed, exam performed, symptoms discussed, course of action
discussed, questions answered. Leave office at 7. Oh! that's why doctor
was so late.

Linda remembers much more about appointment than I do.

Find yourself a new doctor. GOOD LUCK

Timothy
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9 26th March 11:17
herbwormwood
External User
 
Posts: 1
Default Hi all, ? about supportive family members/ spouse (diet)


Hi,
Well my advice would be to get a different doctor, and go in alone. It
will cause conflict between you and spouse and that is not going to help
you. You will need to work on recovering trust between you now. Get him to
explain why he did what he did. Maybe look for a good female doctor if you
feel you have had a lot of male chauvinists. Rapport between patient and
doctor is so important.
We have had official health warnings here in UK about the Atkins diet. Is
your doctor actually medically qualified, and is he on the pay of some
large corporation sponsoring the Atkins diet?


--
for an alternative look at current events, go to
http://www.greenpeace.org.uk/
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10 26th March 11:18
warnock
External User
 
Posts: 1
Default Hi all, ? about supportive family members/ spouse (diet psychotherapy lupus exercise)


*hugs*
I refuse to take my husband to my doctor's visits because I fear this more
than anything else. I know that my husband thinks part of my symptoms are
"in my head" or related to lack of exercise or poor nutritional habits or
any number of other things that "just aren't healthy." Anything that means
I don't have an actual illness. I think this is a defense mechanism for my
husband. He has a lot on his plate already with two children with
significant disabilities. I think that he just doesn't want to face any
possibility that I might really be sick. Maybe your husband froze up at the
doctor's office and decided inwardly that he really didn't want to know.
I'm not trying to excuse him, I've just found that sometimes understanding
why my husband responds in a certain way helps me to cope with the response.
It doesn't make me like it, but it helps me to cope with it. I think it's
really important for couples to talk about these things, to try to
communicate their feelings with each other, and I would encourage you to
tell your husband how you feel if you are comfortable with doing that.

I haven't learned how to "understand" what is going in the head of the
so-called professionals who negatively respond to their patients, downplay
symptoms, or recommend psychotherapy. All I can really say about this is
that it might be a good idea to find another doctor. Especially if that's
what your intuition tells you.

Hang in there.
Larina

P.S. I don't think chocolate and coke cause lupus symptoms. I could be
mistaken here, but that's my thought. As for the Atkin's diet, I would get
a second opinion. The Atkin's diet is the fad diet of the day, but there
can be some health risks (as with any diet). Remember, information is
power. Get all the information you can about the Atkin's diet before you
jump into it. L.
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