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dysquinn
11-23-2005, 09:30 AM
My wife is Korean. She was diagnosed with SLE six years ago while I was stationed in Germany. We now live in Florida. I feel pretty lucky in that from what I've read, her affliction could be much more severe, we caught it fairly early in an initial flare-up. And from what is apparent, her only symptoms are the skin scarring lesions from her first flare, hair loss, and a lesion on her lip, and I think her bad temper is worse, too. She takes Prednisone, Plaquinil, Acifex (for her stomach), and she likes Aleve better than any other, even perscribed Naproxen. She has become increasingly frustrated with everything and is now refusing to take her medicines. She is very stubborn. She also has a very close affinity with Jesus. I am afraid to talk to her Rheumy about this as I'm sure my wife'll see it as an even deeper invasion of privacy, her right to choose, etc., and only react worse. How bad can she get? Can she die? She's refused to take her medicines for about 7 days. I really thought she was doing so well. I'm really worried.

amychen
11-23-2005, 11:18 AM
hi,
sorry to hear about your wife...i don't know what to tell you...i do think that she needs to let her rheumy know that she is no longer taking her medication...i am afraid her condition will get worse if she stop taking her drugs out of the blue...it's very nice of you to be so caring and concern about your wife...maybe you should tell her that you are worried about her and that she should find other alternatives and not give up quite yet!! sorry i can't be of more help...i do hope your wife will seek help and get better...you hang in there!

hatlady
11-23-2005, 12:35 PM
You're walking such a fine line with her, how difficult this must be for you! I suspect her temper means she is very frustrated as well, she may not know where to turn. Do what you can to be supportive. I hope that you will be able to gently help her, to let her know you love and care for her and will be there for her regardless of what lupus or other "bumps" in life may bring.

If you are still part of the military, or if you are at a company that has an Employee Assistance Program, talk with them. They may be able to help you intervene with her appropriately. If you don't have an EAP available, talk to a counselor at the local hospital, possibly the rheumy can suggest one.

Aleve is actually Naproxen, just a different dosage. It is one of the meds I'll turn to when I don't quite want to take a full dose of a pain med. It is hard on the stomach, though. Almost all of them are!

Faith is a wonderful thing - it can help us through many dark valleys. But it cannot work alone. We need the medications and treatments so that the faith can help us heal body and soul.

If you think she'd be willing to talk with others who understand what lupus is like "from the inside" invite her to visit this board, or one of the many other lupus boards. Another I often point people to - because of "The Spoon Theory" is www.butyoudontlooksick.com - perhaps the Spoon Theory will help her realize there are many in the world who truly understand.

Hugs for you - and your wife. Stay connected with us, please.

Saysusie
11-26-2005, 08:11 AM
Hi Dysquinn;
You may also be dealing with a cultural dilema with reference to your wife's background and her health. In Korea, health is understood as a state of balance between positive and negative energy.
Illness may be caused by imbalance (can be both temporal and spiritual). American's regard health by having a strong focus on symptoms, rather than causes (significant implications for preventative medicine and chronic disease management). Sometimes, Korean's may believe that chemical medications, organ donation and transplantations will disturb the integrity of the body and that any mental or psychological problems are to be kept private and are to be dealt with individually.
Korean health practices tend to be more inclusive, abstract and intuitive while westerner health practices are found to be more concrete, practical and personal.
Five categories of health practices have been studied and identified in Korean culture and these influence their health practices; 1)Manage one's own mind, 2)Moderation in all things, 3)Live in accord with nature, 4)Live in mutuality with others, and 5)Live to the best of one's ability.
Cultural elements are an important influence on health practices and life patterns related to medical treatment, recovery from and prevention of disease for all of us.
I think that Hatlady has given you some excellent advice, but I would also suggest that you try to find someone for her who understands her culture to convince her to continue her treatments. Especially, as Hatlady has pointed out, it can be dangerous to just stop some medications!

I wish you and your wife the very best!
Peace and Blessings
Saysusie