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Thread: Wife was just diagnosed with Lupus

  1. #11
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    hi kevin, i am 50 this year, noona just turned 63. a few of us are getting close to your years.

    i to have fibro and lupus.
    when the medication is sorted out, life can become easier.
    when my lupus is out of control, i sleep lots more sometimes 20 hours a day.
    unfortunatelly there is no cure for the 3 auto immune disorders your wife has.
    many of us have multiple, and they are usually interrelated.
    this can make it harder to control, but when they are in balance, life can be enjoyable.

    i hope the rhuemy can see your wife soon.
    wishing you both the best.

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    Hi David,
    Welcome to WHL. Your sweetie is a lovely lady and you are a wonderful husband for being so concerned and involved.
    I have several overlapping AI diseases. I'm 53 and my hubby is 54. My illness has changed our lives, but it has given us some new opportunities, too.
    I had to leave a teaching job that I loved, but the AF offered to send Jeff to The Naval Postgraduate School for his PHD. All five of our kids are grown, so we were free to pack up and move from TX to CA. I'm able to be home and resting a lot more now, but I'm still involved in life. I'm the Vice President of The Officers' Spouses" Club this year.
    We still love to travel, too. In the last few years, we've been to Hawaii, Japan and Greece. I take care to take my meds with me, use plenty of sunscreen, rest when I need to, and I travel with my cane and wheelchair. (I was lifted to the top of the Acropolis in my wheelchair!) We're planning to go to Australia in a couple of years and eventually we'll get to Italy. I'm probably one of the more adventurous people that you will find here. I hurt a lot, and I move slowly, but I refuse to stop doing the things that I like to do.
    It sounds like you and your wife are lots like us, so I'm here to tell you that you will learn to deal with it.
    Everyone has given you some good information. Plaquenil is often the first drug that the docs try. It has worked well for me. I also take a weekly injection of Methotrexate. It slows me down for a day, but I'm usually good to go for the rest of the week.
    Good luck to both of you, and I hope that we can help you.
    BTW - Congrats, Grandpa! We have three grandsons, and they are the best!
    Hugs,
    Marla

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    Hi Kevinhog;
    You have provided two of the most important things to your wife that we Lupus sufferers need.........Understanding and Support. Both you and your wife are so lucky to have one another and the love that you share comes through in your posts.
    You have bee given some very good information and advice by other members of our family here. There is not much more that I can add, other than to let you know that we are here to help you and your beautiful wife in any way that we can. I am so glad that you both are here and welcome to our family

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi Kevin,

    Hows your wife been feeling since you joined?? i wish you both a nice weekend and your wife less pain free days.

    Terri x

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    Hello Kevin,

    I'm a little late getting to this thread, but I wanted to stop in anyway and say welcome to our group!

    Rob

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    Quote Originally Posted by Peridot20_Gem View Post
    Hi Kevin,

    Hows your wife been feeling since you joined?? i wish you both a nice weekend and your wife less pain free days.

    Terri x
    Well, she's slept an awful lot and today she not only ran out of her Vicaden, but mine as well. I'm off work for a back injury awaiting approval for spinal injections, so I have a prescription for Vicaden. I think she uses entirely too much vicaden and now that she's out she is going to get desperate. Is it possible to have this disease without an addiction to painkillers??? How much of her problems could be as a result of the vicoden??? I guess we'll know more when she sees her Arthritis Doc, thanks for asking.

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    When does she see her doctor, and are you able to go with her just to give the doctor your point of view about the difficulties your wife is facing?
    Diagnosed with Lupus - 22 June, 2010

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    I agree with Linda. You need to go with her to the doctor. You need to be her advocate on all things, and that includes helping find the kind of meds that will take away the pain without the addiction issues. There are pain meds that can do that but, even better, there are meds that will actually work to lower the amount of pain so that the pills are not needed. She will need someone there to go to bat for her though. Don't let them dismiss her even though they may try. Don't let them look at her like she is a drugged out female that just wants the meds. Don't let them ignore her problems. If you do that then you can help them to REALLY help her and not just cover the problems with pain meds.

    She is lucky to have a husband like you
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    We are awaiting the referral for her Arthritis Doc so no date yet. One of the biggest issues we have and we have gone rounds and rounds over it is her Vicoden use. She is constantly using more than prescribed and I am concerned about addiction, and confusing symptoms with addictive cravings. I have a thorough understanding of addictive behavior and she does not, but she can only see my misgivings as complaints and being judgmental, as any addict would. It's all justifiers because she is in denial about her drug use. She has also picked up smoking again after five years, she says it helps but I really resent the hell out of it. That is difficult to get around and I know it's very destructive to any relationship, so I am stuck between resentment and acceptance. This is a difficult time for sure, I am sleeping more as well but I know it's because I'm a little depressed, I should be, this is life changing stuff and financially we will be forced into bankruptcy and many plans that have been made are not going to come to fruition. There already money stressors because she was making twice the money and lost her job, I think because she was late all the time due to oversleeping her alarm, now she cannot return to work for sure because we can make no plans that involve her being anywhere at any time. This is completely unlike the person I married, we used to fight because I didn't plan things the way she liked, she is highly organized. At this point I'm afraid neither of us can see much of a light at the end or the Lupus tunnel. From what research I can glean from the web it looks like this is going to be spiral to hell for both of us.
    I think I need to plan to move close to my kids about 250 miles away, but there is no way I can leave my job with the school district because of my medical benefits so I don't know how to get there from here. I haven't even had a chance to talk to my kids yet to tell them the extent of her illness, my Son will understand because he is a Fireman and a Paramedic but my daughter has already told me she thinks it's all about the drugs when we told her it was fibro, maybe she'll come around when she finds out it's Lupus. So, as I'm sure you all know, this sucks and it's only the beginning. Thanks for the compliment Mari, some times here lately I don't feel so much the good husband, I feel selfish, I don't want our lives to take this turn but there is nothing I can do but roll with the punches and keep putting one foot in front of the other....it will all work itself out some how, it always does don't it?

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    Kevin; Please do not doubt yourself as a good, caring husband. If you were not both of these things, you would not get upset about her abuse of Vicodin or her return to smoking.
    Know that, being a good husband may also mean applying a little "Tough Love" for sake of your wife's health. I, recently, had to finally use "Tough Love" on my mother who was (like your wife) abusing her vicodin while also abusing alcohol. Every time that she would have a problem, a slip and fall, or any mishap..she wanted to blame on her lack of vicodin, her other medications..but never her excessive alcohol consumption or her abuse of vicodin. Finally, after a slip and fall, she was taken to the emergency room at which time, the doctor smelled the alcohol on her and could tell (by her chart) that she was using too much vicodin. The doctor gave her a choice; give up the alcohol or the vicodin or she was going to die. After hearing this, I basically told her that if she did not give up both, she was going to lose me. She, in her usual way, chose to lose me because she continued to drink and use the vicodin. I am not sure if her decision has or will change because I have had very little contact with her since that conversation. One thing that I told her, that I thought it was important for her to know is that..her alcohol use and vicodin addiction may feel like it is helping her, but it was killing me. She never considered what her actions were doing to the people around her, she only thought about how it made her feel and that was selfish. She needed to know that her actions were destroying me both emotionally and physically. So, she is not in this world in a bubble, it is as if she is in a lake and that everything she does has a rippling effect on everything and everyone around her!
    It would seem to me that your wife's doctors would know that she is using her vicodin too quickly and too often. I agree with what the other members have said: accompany her to her next appointment - make sure that you let her doctors know that she is abusing her vicodin as well as yours, that she has returned to smoking and that you are truly concerned for, not only her health, but on how her actions are affecting the family dynamics and, in particular, how her actions are affecting YOUR health!
    As has been mentioned by others, there are other pain medications that can be prescribed that are not as addictive as Vicodin (that do not contain codeine). Ask about other options while she is with you at her appointment. It is important that her doctors know everything and that your doctors know everything, in order for them to provide the best treatments for you and for her.

    I wish you the very best
    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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