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Mother diagnosed with Lupus, trying to cope with it.

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Posted 9/17/2009 3:31 PM (GMT 0)
My mother got diagnosed with lupus about 3 months ago. while it was a relief to finally know what it was that was causing her so much pain and suffering since christmas last year, it was still a shock to all of us.

even though 3 months have passed (and she has been getting treatment), it still feels fresh everyday, as if i had received the news every day since that time.

i have found this forum helpful in helping us learn and cope with the new changes in our lives. but i still feel like i lack the knowledge to truly cope with it.

i have decided to join this forum because, even though i have a BS in biology and know how to research on my own, it pains me to do so. it's like a reminder of the possibilities. i can look at it from a technical aspect, but having issues looking at it from an emotional aspect.

it's gotten to the point we don't even talk about it. when we mention it, we don't say "lupus", we just say "her condition".

i want to talk with my mother and lay out plans. possibilities. discuss her "condition" but i find it hard to do.

as such, i want to ask for help in techniques the forum members here often use to deal with situations such as this. anything will be appreciated.

i have noticed things such as making a list of daily symptoms and presenting them to the doctor etc....

she was put off prednisol last appointment and put on an anti-inflammatory (forgot the name...thats how bad it is) and was found to have high potassium in her blood. i havent slept a wink all week, and i'm scared to bring up the subject to her. the doctor keeps having meetings with her every appointment to discuss what gives her stress (and she has a LOT), and i always keep thinking of the worst. i get so scared of every doctor's appointment i don't even go with her. i feel so pathetic.
Posted 9/17/2009 4:08 PM (GMT 0)
silent,

You poor thing. I believe it's harder to hear bad news about someone you love than it is to hear it about yourself. First of all, lupus is not a death sentence, and your mom is one of the lucky ones who got diagnosed quickly. You'll hear many people here say that it took years and often several rheumatologists to finally get a diagnosis.

You're doing the right thing in wanting to educate yourself. I recommend that you purchase a book called The Lupus Book : A Guide for Patients and Their Families by Daniel J. Wallace. It's available online at Barnes and Noble and Amazon.com. It will give both you and your mom a lot of good information about lupus and it will open the door for dialogue between the two of you. I don't know your mom, but I do know that if one of my kids had approached me wanting to talk when I was diagnosed, it would have meant the world to me. Your mom is a very lucky woman because so many lupus patients have family members that a) don't really believe that they are sick because this is such an invisible disease, or b) chose to ignore.

For me, the Lupus Foundation of American is the best medical source of information online. You can go to the main page and type a question and you'll be directed to the appropriate site. Their main website can be found at:

www.lupus.org/newsite/index.html

One of their sites that might be particularly helpful to you at this time is:

www.lupus.org/webmodules/webarticlesnet/templates/new_learncoping.aspx?articleid=2260&zoneid=528

You also may want to talk to a professional. I have a standing appointment with a therapist who helps me deal with all aspects of the disease and I don't know what I would do without her.

You are an angel of a daughter for caring so much. I believe you can find a time and a place to open up a dialogue with your mom. She may have no idea it's bothering you or worrying you so much. You might use the book as an opening for conversation.

The strange thing about lupus is that every patient has a different experience with the disease. I, for instance, was so sick for a couple of years that I barely got out of bed. And yet today I lead a fairly normal life. Many of us never have internal organ involvement, and many people to into remission. I believe I have.

I'm so glad you decided to join our forum. Tell us more about yourself so we can get to know you better.

Take care,

Pat
Posted 9/18/2009 2:49 PM (GMT 0)
Silent, I just wanted to welcome you to the forum and let you know that your mom is a
very lucky woman to be blessed with a loving and caring daughter. The love and support
of family and friends goes a long way in coping with an illness.

Pat, gave you excellent advice. Lupus is differant for each of us. A med that works for
one might not work for another. We have differant issues. I still enjoy life, take one day
at a time and I am happy.

Keep us posted, We care
Robin
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