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.
"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown