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  1. #11
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    Yes she has been giving me healthy food. We're Asian and she's a really health concisious person. For her, she just wants to do things naturally but hopefully she'll come to understand that condition needs the medication. She's always with me during appointments. Our rheumatologist is one of the most senior so I should be good.

    Quote Originally Posted by Gizmo View Post
    Is it safe to assume that your mom has been feeding you healthy food all along? Based on that you could make the argument that your diet alone wasn't enough to keep this from happening. There are foods that are supposed to help with inflammation and pain (sour cherries come to mind), but they don't take the place of meds. There was a good list in the AARP magazine a few months ago. I'll see if I still have it. The very first thing us moms do for our kids when they are born is feed them. It's a strong instinct to nourish and comfort our kids. Maybe you and your mom can agree that she will be in charge of helping you eat in the best way for your disease, and she will agree to voice her concerns directly to the doctor and follow his/her instructions carefully, including taking meds as directed. It sounds like your doctor(s) are taking this very seriously, so make sure that your mom is with you at your appointments, so that she can hear what the doctor says and ask questions. You might be able to ask pointed questions, like "Can I control this by eating a healthy diet?" "Is it safe to take herbal medicines?" "What do you think would happen if I don't take my medications?" or even "My Mom isn't comfortable with the treatment plan. It would be great if the two of you could talk about why you are giving me these drugs." Maybe you need a second opinion to convince your mom that the doctor is right - just make sure you get a good rheumatologist and not a homeopath or chiropractor. Unfortunately your mom does have the power to take away your meds until you are 18, so it's great that you are standing up for yourself and that she is listening.

    Motherhood equips you with all sorts of instincts to protect your children. She is realizing that she can't protect you from all the bad things in life, and it sounds like the meds have become a symbol of your disease in her mind. Her instinct, at a level below rational thought, is to protect you from what she sees as a threat. Our meds do have potentially serious side effects, so not only are the meds a constant reminder that you are sick but they also have the potential to make you sick in a different way. She is going through the classic stages of grief, and unfortunately denial is the first one and acceptance is the last. Hopefully she will find the emotional support that she needs (from someone other than you) to get through this so that she can be your ally.

  2. #12
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    Hello missfearless,

    I have a passing friend where i live and she's jamaica origin and as full blown Lupus and is abit older than me as i'm 42, she had the full works when she was younger and would'nt touch the meds just how your mom feels about you and used herbel remedies totally believed in them, i saw her just after christmas as i've not seen her since. She looked totally ill, she'd lost alot of hair from the front of her head, dark pigments across her face, she just looked really ill, she came talking to me and this is the lady who would'nt touch meds linked to Lupus, the day before she saw me she'd started on plaquenil.

    Some things just won't work how your mom believes and this friend of mine because sometimes a point of no return comes, so you go on the stuff which can help best.

    Terri xxx
    Last edited by Peridot20_Gem; 06-15-2011 at 06:06 AM.

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  4. #13
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    Quote Originally Posted by missfearless View Post
    Yes she has been giving me healthy food. We're Asian and she's a really health concisious person. For her, she just wants to do things naturally but hopefully she'll come to understand that condition needs the medication. She's always with me during appointments. Our rheumatologist is one of the most senior so I should be good.
    I married into a Japanese American family, so I know that there are cultural values that are an integral part of how people think about the world. I think that distrust of Western medicine is especially strong for folks who were born outside the U.S, as opposed to Asians who are 2nd or 3rd generation Americans. The really great thing about Asian values is the emphasis (like your mom's) on healthy living, balance and family. That's something that doesn't come naturally to a lot of us caucasians LOL. As you probably already know, Asian women are at a higher risk of developing lupus. Are there any cultural beliefs about illness that might be affecting your mom's response - like is sickness something to be kept secret, or something that you don't talk about with people outside your community? I don't know much about Asian cultures outside of the Japanese American variety.

  5. #14
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    Hello Missfearless,

    How you feeling now in yourself and is your mom better about you taking the meds? xxx

  6. #15
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    Hi gizmo, my mother is just someone who believes in using things that are natural. However since I last posted, I can tell that she has accepted the fact that I HAVE to eat medicine. She'll probably still cheat a little and insist I don't eat medicine for high blood pressure and cholesterol but at least she is not stopping me from eating the hydroxychloroquine and prednisone.

    Quote Originally Posted by Gizmo View Post
    I married into a Japanese American family, so I know that there are cultural values that are an integral part of how people think about the world. I think that distrust of Western medicine is especially strong for folks who were born outside the U.S, as opposed to Asians who are 2nd or 3rd generation Americans. The really great thing about Asian values is the emphasis (like your mom's) on healthy living, balance and family. That's something that doesn't come naturally to a lot of us caucasians LOL. As you probably already know, Asian women are at a higher risk of developing lupus. Are there any cultural beliefs about illness that might be affecting your mom's response - like is sickness something to be kept secret, or something that you don't talk about with people outside your community? I don't know much about Asian cultures outside of the Japanese American variety.

  7. #16
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    Missfearless, I believe in using things that are natural. When I was diagnosed with lupus I went to see a homeopath and I do believe that what she did made me feel better a lot. HOWEVER, I was also regularly seen by the university hospital doctors and kept sticking to my medicine. If your mum would break her foot, she'd go and see a doctor, right? She wouldn't sit at home and drink herbal tea to make it better. Well, your body is broken in a way so it needs looking after. The medicine you are taking was developed by studying the human body for a long time and how it works and why some things don't work.

    Your mum insisting on eating healthy is a very good thing, it can only add to you getting better.

    I used to be on prednisone but now I'm only on hydroxychloroquine because my doc said there is no need for me to take anymore prednisone and he slowly reduced the dose until I could fully stop. It's actually really dangerous taking steroids for a while and then abruptly stop taking them. This could harm you more than do you any good.

    Good luck to you and keep positive, having lupus is not totally bad!

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  9. #17
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    When I struggle with the meds the doc put me on, I call them and ask why I am specifically on them and if it would harm me to back off of them. My doc believes I must stay on all I am on, because each time I tried to cut back, I got very sick. Again, I truly believe in quality of life and if the meds can bring that to me in spite of the side effects, I am in! I hate the fluid retention. I hate the weight gain. I hate the nausea. But my hair grew back, I can walk again, the organ inflamation is under control, I can laugh again, I am back to work, I even hiked many miles last fall.

    I hope that as your mom learns about the reasons for each med given to you, she will make good informed decisions for you.Good luck to you!

  10. #18
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    Hello, I'm taking my meds but having water retention. I am awaiting results for my kidney biopsy but prelim results show that my kidneys are 30% inflammed. I hope the kidney doctor I'm seeing next week will be able to identify and quickly solve the problem. The water retention is terrible! Everything from waist down is swollen.

    Quote Originally Posted by Peridot20_Gem View Post
    Hello Missfearless,

    How you feeling now in yourself and is your mom better about you taking the meds? xxx

  11. #19
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    Im so sorry missfearless, going throughout the day with swollen legs and feet is truly uncomfortable and embarrassing as so many are in cute little handles .Ugh! I hate it. I know when my kidney was dumping protein my legs swelled even worse. Once the inflammation went down so did my swelling. I hope this for you. Now I am on several meds that cause fluid retention. I can't have quality of life without them so I am learning to accept the new me. To think I was asked to be a model and ran10 miles a day in my past, is hard to believe.

    I prop my legs whenever possible and eat foods that are natural diaretics. Water pills don't help me as I had veins removed and the lymph nodes can't do the job. Hang in there dear. Just keep reading and educating mom.

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  13. #20
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    Quote Originally Posted by missfearless View Post
    Hello, I'm taking my meds but having water retention. I am awaiting results for my kidney biopsy but prelim results show that my kidneys are 30% inflammed. I hope the kidney doctor I'm seeing next week will be able to identify and quickly solve the problem. The water retention is terrible! Everything from waist down is swollen.
    Sorry you've had to have a kidney biopsy and you've got fluid retention but what we use here in the uk which does flush your kidneys out as i used to pass blood in my urine through my kidneys...is drinking Barley water, if you could get a bottle of just Barley water and dilute it with water it will help your kidneys as it also flushes out any filth around your kidneys.

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