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MOMWLUPUS
08-31-2011, 11:37 AM
This has caused me great depression, first of all because I have to have my meds and second of all he doesn't understand lupus, he actually told my Mom she isn't the same since she's had lupus, really, heck no I'm not the same, I didn't ask for this incurable disease and all it's associated characters that come with it, yes everyday of my life since being dx has been a struggle and for some reason he must think there is a magic pill or something I can do and it will all be better. I told my rheumie about this and he said he was willing to sit down with him and explain lupus, however, I don't think it would do any good, go in one ear and out the other...He actually made me sign a paper for my pharmacy so he could get a list of all the meds I'm taking, I have nothing to hide, then he mentioned something about getting a power of attorney???wth??? He then asked me again the other day I bet you can't even name off all the meds your on and what their for.... I'm getting so tired of this, I don't know if he's mad because of the cost or what to think?

tgal
08-31-2011, 12:46 PM
Wow. I thought this thread was about taking too many meds but there is a lot going on here. What is happening that he wants to be your POA? I have confirmed brain issues on top of everything else and I don't have or need a POA so I am not sure what is going on that your husband thinks that you need one. I really want to help but could you give a little more info on why he thinks you need one/why he wants on?

On another note... Welcome to WHL. We are glad to have you as part of our WHL family!

rob
08-31-2011, 12:53 PM
[QUOTE=MOMWLUPUS;95898]This has caused me great depression, first of all because I have to have my meds and second of all he doesn't understand lupus, he actually told my Mom she isn't the same since she's had lupus, really, heck no I'm not the same, I didn't ask for this incurable disease and all it's associated characters that come with it,...QUOTE]

Hi Momwlupus,

I actually had my former girlfriend and then soon to be wife say this exact same thing after my SLE diagnosis in 2004. "You're not the same since the diagnosis". My response was a rather angry and sarcastic "Well, no s**t genius!".

I was diagnosed with a chronic, incurable, and sometimes fatal disease. What was I supposed to do, throw a frakking party? Our relationship devolved into her constantly telling me how hard my disease was on her. Some people in our lives will eventually at least try to understand, and others will not.

I wish I had some really good advice to give you, but I don't. I do think that the rheumo sitting down with him and having a frank discussion is worth a try. I would also say stand your ground, regarless of who doesn't like it and why.

It's ironic that the refusal of a spouse or loved one to try to understand Lupus causes us stress which can lead to a flare, causing us to have to possibly take even more meds than we are already on. Telling him straight up that his own actions and attitude could end up causing you to have to be prescribed even more meds, might be worth telling him. We guys like to fix things. If he understood that backing down a bit and being more supportive of you would really help fix some things, maybe he'll at least start to change his attitude.

I understand your anger, and your frustration,

Rob

PS-Welcome to WHL.

Bonita
08-31-2011, 01:28 PM
This is something we all have to deal with at times. My husband does not understand a lot of this and if i complain to much he comes up with what he has and compares it i do not think he understands the complications of this diease . Bonita It is not that he does not care but does not take it seriously

MOMWLUPUS
08-31-2011, 02:06 PM
Wow. I thought this thread was about taking too many meds but there is a lot going on here. What is happening that he wants to be your POA? I have confirmed brain issues on top of everything else and I don't have or need a POA so I am not sure what is going on that your husband thinks that you need one. I really want to help but could you give a little more info on why he thinks you need one/why he wants on?

On another note... Welcome to WHL. We are glad to have you as part of our WHL family!

I asked him why he would want a power of attorney and he said nothing. He seems so frustated with me here lately because the Methotrexate I'm on lays me out for a couple of days I come home from work and go straight to bed sometimes not every week then my memory has been going here lately, he will make a comment like "your so drugged up you don't even know were you are" ah no thats not it, sometimes I feel so bad when I wake up it takes me awile ya know....my hips have been acting up I've had cortisone shots in them the other day he asked why are you waking like a 80 y/o woman, gee cause I want to I guess?! Then my face broke out and was very upsetting got these sores I think from my medicine, he thought I was picking my face and they were pimples and I had to get my DL renewed and he said your not getting your DL renewed with your face like that are you? I hung up and started crying like I can help it, finally my Dr gave me a script to clear up my face. My husband is very hateful all the time and verbally abusive but I have 3 kids in school and I feel like I'm stuck with no way out. I wouldn't know how to act to have someone be nice to me...Here is a list of meds let me know if you think it's to much:
Zonegran: neuropathy and migraines(just got thru having m/g x 3 mos in a row)
Plaquenil: Lupus
Methotrexate Injection 0.6ml: Lupus
Advair: Asthma
Xopenix: Rescue inhaler
Folic acid: to go with MTX
Omneprilezole: Stomach Ulcer for taking to many NSAIDS
Cymbalta: Depression
Percocet: Pain
Aspiring dailyfor possible TIA
I have Lupus, Raynauds, Possible TIA's Asthma, Bursitis, Migraines, Neuropathy, possible sjogrens, thanks.

kim,l
08-31-2011, 04:19 PM
dear mumwlupus i am so sorry you are going through this we all have had someone in our life who does not understand and it is frustrating and very hurtful as someone who had power of attorney over my son my advice to you would be think very seriously they can be very bad i have had nothing but trouble that is why i no longer do it under no circumstance sign it unless you have legal advice first it can get you in a lot of trouble. and no i do not think it is to much medication a lot of us are on lots of medications. i am on mexotrexate, plaquenil, prednisone, aspirin, valium, tramadol, atacand, vascocardol.throxine,, somac, folic acid, until they go through the same pain on a daily basis they have no way to understand it does take some adjustment on there part i know hopefully in time he will understand but until then just remember we are here for you to talk to at anytime hugs

debbie-b
08-31-2011, 05:05 PM
Hi MOMWLUPUS,

First, welcome to WHL.
Even though my husband is very supportive, in the beginning he didn't understand either. He thought, taking the meds will make it all better, that is what he actually said, " take your pills, honey, so you can get better".
I had to take his hope and smash it, I had to tell him, there is no cure, because when he said get better, he meant cured. I did explain all that right after I was diagnosed, but he did not understand. Maybe he was in denial.
Now he understands, but still gets on my butt, about taking my meds, because sometimes I forget. He knows how much worse I feel, when I slack off with my meds.
He is real upset for me right now, because I had to stop MTX, ( high liver enzynes), he is upset, because he knows it has really helped me with my pain.
I don't know, what your husbands problem is, but I hope he is just not ready to deal with the fact, that you are really ill.
Good luck to you.

Debbie

n.mac
08-31-2011, 05:23 PM
Until I was diagnosed with lupus I thought I understood what it was to have chronic pain/illness- but I didn't.
Oh sure I understood the dictinary definition,but until you experience the pain and frustration you can never really know.

I am blessed with a sweet wonderfull wife who has been a nurse for 20 yrs-but there are times when she is clueless and I have to remind her that I have limits on what I can do.

KCat
08-31-2011, 06:16 PM
Just a quick response for now: That list, though certainly unpleasant, doesn't look much different from my list. I'm not on MTX but substitute some heart meds and valium and you have me. That's about par for the course for most of us. I would have stronger words for your husband but it's probably not kosher on the board. Whether it would "go in one ear and out the other" or not is beside the point, I think your doc should talk to him. If for no other reason than the doctor needs to see this attitude as well, don't you think? Or does it scare you that your husband will get angry and abusive (verbally or otherwise) if you "humiliate" him by making him listen to someone who knows better than he does? I don't know...it just sounds like a bad situation that you shouldn't have to be going through.

You are in my thoughts. Please find someone to stand with you, not against you. Therapist, doctor, family member?

steve.b
08-31-2011, 07:47 PM
you can lead a horse to water......
but you cannot make it drink.

you can give your husband the facts.......
but you cannot makre it sink in.

if he does not understand, then nothing you do will change that.
if it is beyond his understanding, then nothing you say will help.

it is hard to try to make someone understand.

as a male i tried to make my wife better.
(she has several health issues)
i worked in the mines, to make enough miney, so she did not have to work.
i took her to the best doctors i could buy.

untill i became ill, i did not understand her pain.

all you can do is feed your husband little pieces of information, so he can slowely learn.
it is oveerwelming to not understand how someone you love is hurting.

MOMWLUPUS
08-31-2011, 11:21 PM
Thnks guys for listening it is so nice to b able to talk with someone who can relate. The thing that bothers me the worst is that he said he is having a POA written up. This bothers me to no end not sure what he is tryin to pull or maybe playin around with me it's upsetting I have more things to add but it's 1:00am so guess I better wait til later thks again

KCat
09-01-2011, 09:03 AM
well, he can have it written up but he can't force you to sign it.

In my case, my husband and I both have POA for each other but we trust each other completely and it's a shared responsibility. I have a problem with one spouse being the soul POA like this. If he has it written up than there should be a corresponding POA for you in case something disables HIM!

Gizmo
09-01-2011, 12:42 PM
Momwlupus, I would be very concerned about the POA, also. What if you have a discussion with your rheumy about this? Maybe even make a special appointment. Then take your husband to your next regular appointment and let the rheumy tell him that you are competent to make your own decisions. My hubby and I have POA for one another, but ONLY in the event that we are incapacitated (as in comatose). If he is insistent about the POA, go to the lawyer together and make sure BOTH of you sign the same papers.

Your med list is no longer than mine, and shorter than my daughter's. Here's an idea - if the cost is the issue, can you budget for him to get "fun money" equal to the cost of your meds? Then the more meds you take, the more fun he gets to have. The catch is that he can't complain about your meds, or he loses his fun money for the week. I'm only half joking about that... if you feel trapped in this situation with a verbally abusive spouse, maybe you can find a way to sweeten the pot for him and make the situation more bearable for yourself. In the meantime, maybe you could find a free or low cost legal source to figure out what your options are on the POA and any other concerns you have. I really feel for you and hope you can find a way to decrease your stress.