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KCsMOM
08-06-2007, 03:06 PM
I would love to hear suggestions from those who were diagnosed at a young age or know others who have about how I can best help my son learn to cope with lupus. What did your parents or other family members do that was helpful to you or made you feel better? He was diagnosed about 1 1/2 months ago after a number of tests and a kidney biopsy while in the hospital for 1 week. He has SLE with lupus nephritis(class 4). He is currently taking prednisone and monthly IV Cytoxan as well as blood pressure medication. He has a wonderful doctor who is very kind and extremely experienced. I have also read just about everything in the library on lupus so I feel comfortable with his current treatment(except for the natural concern over potential side effects) He is doing much better now and his doctor feels that he will do well. I want to make this adjustment period for him as easy as possible. He is an extremely brave little boy and amazes me everyday. Any suggestions will be greatly appreciated.
Blessings and peace,
Beth :)

browneyedgirl53
08-07-2007, 08:48 AM
Hi KC's Mom,

I'm proud of you for reaching out and searching for help. I think that's one of the most important steps you can take to help in your walk with your precious son. I can promise you this; it's a road that will be full of doubt and frustration with an occasional few blind corners when lupus flares seem to pop-up out of nowhere....as a mother, it is our nature to want to "make it all better". I believe that understanding right away that your strength and commitment through all of this does not come by walking this journey alone. We are all in this together and you will ALWAYS, ALWAYS have a place to come where you can share your thoughts, fears, anger, worry and tears. There are many of us that are in your son's condition. If our wisdom in years and experience in time helps us to help you, then consider yourself bonded to a wonderful group of loving lupus family friends. Taking care of you is THE MOST IMPORTANT part of helping your son. Please, know that there will always be help when you need it from us.

I think what I was most frustrated about lupus when I first was diagnosed was the amount of doctor appointments and taking a boat-load of medicine. It takes time to get your "routine" down, and I think that is so important for the both of you. As structured as our lives become because of this disease, it becomes our haven of sorts because as much as we think we hate "the routine", it is that routine that helps keep us from flares (sometimes). Remember, you can do everything you're suppose to and he can still have flares.....lupus likes to pop-up whenever it pleases.
Everyone is different and react differently to meds, activities, etc. For me, one of the first things I had to change was dressing so that I wouldn't get sunburned. The sun really seems to affect me, so now when I am able I hike with long sleeves and long pants, etc. I always have a water bottle with me wherever I go, because of the kidneys.

There will be lots of loved ones stopping in to share their wisdom with you. Our administrator, Saysusie, who's daughter had lupus can share with you her wisdom and experiences. You have found a wonderful site as it relates to everyday living with lupus.

My thoughts and prayers will be for you and your son, remember you are never alone and no question is dumb or foolish. Getting wisdom helps create peace. We're here for you.

Much love,
Browneyedgirl

TERIOD
08-07-2007, 08:53 AM
keep reassuring him that everything will be ok, there is nothing better than a positive attitude

browneyedgirl53
08-07-2007, 09:27 AM
Oh yeah, Teriod is right.....BEING A MOM....IS BEING A CHEERLEADER AT THE SAME TIME !!

Smile - Much love,
Browneyedgirl

KCsMOM
08-07-2007, 11:41 AM
These past few months have taught me so many lessons but the biggest of all has to be just what you are talking about. It has been a roller coaster ride from not knowing what was wrong, to the diagnosis, and then the start of treatment Our son is our only child and his illness is the most difficult and painful thing that my husband and I have ever had to face but at the same time it has also made us extremely positive and hopeful people. I know that God is with us and we can handle anything with Him. I feel so blessed to have found such a wonderful support forum with you all. You are all so uplifting and positive. I know that a huge part of helping our son is letting him see us be supportive and positive. Thank you for being such wonderful inspirations to my family and I.
Blessings and peace,
Beth

browneyedgirl53
08-07-2007, 05:37 PM
Consider the privilege ours, those who have walked this journey before me have been a tremendous help and I know I would not be able to weather the storms of life without my faith, friends and family.

Keep comin' back, we're happy that you're here!

Much love,
Browneyedgirl