Question:
Hi Jackie You are right absolutely and I so appreciate everything you said. I need to change my focus and not expect to change my husband’s personality as you stated. Thank you so much to all of you for your kind comments and ideas. I am never alone in this because I have my family of course, but I am also fortunate enough to get to know all of you:-) Nicole C. in Austin Yall "Jackie in CA" <jane…@hotmail.com> wrote in message <news:LxL6b.2734$Yt.445@newsread4.news.pas.earthlink.net>… – Hide quoted text — Show quoted text -> > 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 > Hi Nicole, I’m coming in late on this discussion, but I do have > a perspective on the situation you described. I too, took my > husband with me to help explain the impact of the disease to > my doctor. I needed his support because I don’t express > myself well. I felt VERY let down by his attitude and couldn’t > understand why he said so little and seemed reluctant to back > me up. He explained himself this way: The doctor is the > authority and it is not up to him to tell the doctor his job!!!!!!!! > In a way, I think it is a "guy" thing. > In retrospect, I can see that this is entirely consistent with his > personality. He is a retired police officer, a very controlling > type person; an authoritarian. He could not conceive of > tolerating anyone not in law enforcement telling him how > to do his job, therefore, he could not conceive of what he > considered to be telling the doctor how to do his. > Complicated? Yes. Consistent? Yes. > Once I realized that I could not reasonably expect him to > change his personality, I changed my approach. I had > to really coach him. I worked overtime explaining to > him that clarifying symptoms is not telling the man how > to do his job. It was not until he became quite ill himself > and needed my help that he began to understand what I > needed. My cause was helped when he ran into a few > incompetent MDs himself! Even so, you would think > that he was testifying in court to hear him bend over > backwards not to say anything less than a complete and > true fact – and that only when asked! > He’s more helpful at the doctor’s than he used to be. > I’ve lowered my expectations of him. I’ve also worked > hard at making myself more articulate – even if that means > writing out what I want to say and handing that to the doc > as soon as I can. I’ve also had to learn to tell any doc > to give me all instructions in writing because I will not > remember otherwise. If he/she wont, I find another doc. > One of the first lines I write tells the doc to talk slowly > so that I can absorb what is said! > It is still (at age 60+) hard to be assertive with doctors. > I still work at it. It takes practice, determination and > stubbornness. I’m still easily thrown off-track but I get > back on-track better than I used to! <g> > Anyway, when you are feeling relaxed, take a good > look at your husband’s personality/characteristics. > Try to find a solution that fits him – I’m sure he wants > to be helpful but that he feels awkward for some > reason. > Good Luck, > Jackie
Response:
> 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
Hi Nicole, I’m coming in late on this discussion, but I do have a perspective on the situation you described. I too, took my husband with me to help explain the impact of the disease to my doctor. I needed his support because I don’t express myself well. I felt VERY let down by his attitude and couldn’t understand why he said so little and seemed reluctant to back me up. He explained himself this way: The doctor is the authority and it is not up to him to tell the doctor his job!!!!!!!! In a way, I think it is a "guy" thing. In retrospect, I can see that this is entirely consistent with his personality. He is a retired police officer, a very controlling type person; an authoritarian. He could not conceive of tolerating anyone not in law enforcement telling him how to do his job, therefore, he could not conceive of what he considered to be telling the doctor how to do his. Complicated? Yes. Consistent? Yes. Once I realized that I could not reasonably expect him to change his personality, I changed my approach. I had to really coach him. I worked overtime explaining to him that clarifying symptoms is not telling the man how to do his job. It was not until he became quite ill himself and needed my help that he began to understand what I needed. My cause was helped when he ran into a few incompetent MDs himself! Even so, you would think that he was testifying in court to hear him bend over backwards not to say anything less than a complete and true fact – and that only when asked! He’s more helpful at the doctor’s than he used to be. I’ve lowered my expectations of him. I’ve also worked hard at making myself more articulate – even if that means writing out what I want to say and handing that to the doc as soon as I can. I’ve also had to learn to tell any doc to give me all instructions in writing because I will not remember otherwise. If he/she wont, I find another doc. One of the first lines I write tells the doc to talk slowly so that I can absorb what is said! It is still (at age 60+) hard to be assertive with doctors. I still work at it. It takes practice, determination and stubbornness. I’m still easily thrown off-track but I get back on-track better than I used to! <g> Anyway, when you are feeling relaxed, take a good look at your husband’s personality/characteristics. Try to find a solution that fits him – I’m sure he wants to be helpful but that he feels awkward for some reason. Good Luck, Jackie
Response:
*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. "Nicole Clifton" <nrclif…@aol.com> wrote in message
news:e9bd925a.0308271752.20ad8dde@posting.google.com… – Hide quoted text — Show quoted text -> 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
Response:
In article <e9bd925a.0308271752.20ad8…@posting.google.com>, Nicole Clifton <nrclif…@aol.com> wrote [ >One more thing, my dr. actually made fun of lupus support groups and >said they were not helpful????????
A few do hold that view - one UK consultant said "In my hospital, *I* make the diagnosis" and had all the leaflets taken away. -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!
Response:
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.
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
Response:
On 27 Aug 2003 18:52:56 -0700, Nicole Clifton wrote: > 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. > Nicole C. in Austin
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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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 "Nicole Clifton" <nrclif…@aol.com> wrote in message
news:e9bd925a.0308271752.20ad8dde@posting.google.com… – Hide quoted text — Show quoted text -> 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
Response:
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 – Hide quoted text — Show quoted text –
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- Hide quoted text — Show quoted text -bruce wrote: >>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???????? > Nicole C. in Austin > Hugs Nic > Maggie said it better than I can , but what I see is that hubby may have > seen the DR. as god and feared going head to head with him. > You have the right to be hurt as he did defend and support you. > That DR. is not for you , change now if you can , female intuition is seldom > wrong!!! > Me feels that strong coaching by you to hubby with electric cattle prod is > in order. > Bruce On. " Grrrrrrrrr "
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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> 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????????
Nicole C. in Austin Hugs Nic Maggie said it better than I can , but what I see is that hubby may have seen the DR. as god and feared going head to head with him. You have the right to be hurt as he did defend and support you. That DR. is not for you , change now if you can , female intuition is seldom wrong!!! Me feels that strong coaching by you to hubby with electric cattle prod is in order. Bruce On. " Grrrrrrrrr "
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(((((((((((((((((((((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 amusement 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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Hugs Nicole, and I know that won’t help…. Cindy "Nicole Clifton" <nrclif…@aol.com> wrote in message
news:e9bd925a.0308271752.20ad8dde@posting.google.com… – Hide quoted text — Show quoted text -> 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
Response:
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
Response:
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>> My son (age 5) >> and of course theres ME >> now I dont want the newbies and lurkers to panic, they did prove with out > a >> doubt that lupus is NOT sexually transmittable. They found a great aunt on >> my moms side that died of lupus. None of the rest of the family will be >> tested. And to explain something. Me, My mom, My sister, and two uncles on >> my moms side all have the Heridtary Hemochrostasis (sp?) OH some of you >> remember that one I told you you were scaring me with!!! >> OH and the list above is all from my dads side of the family. >> Go figure! >> Paula from AL >>> Will children of people with lupus get lupus? >>> Because so many genes are involved in the development of the disease >>> (only half of which are inherited by a child from one parent with >>> lupus), and because environmental triggers have to occur during the life >>> of the individual to make the disease appear, it is not common for the >>> children of people with lupus to have lupus. Most studies have shown >>> that about 1 in 20 people with lupus will have a close relative (mother, >>> aunt, sister, brother; less often father or uncle) with lupus. >>> — >>> Andy [Editor, Austrian Philatelic Society] >>> For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> >>> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> >>> For my other interests <URL:http://www.kitzbuhel.demon.co.uk> 