10-12-2008, 11:25 AM
My name is Yvonne and I have been diagnosed with lupus for 3yrs. I also have Raynauds's as a second desiese. At this point I feel in my heart that there's something else that wrong. Of coarse all them standard test have been done and nothig. I'v been married for 15yrs and he just has this "suck it up" attitude (ex marine), I'm not walking on eggshells for you. Our daughter was just diagnosed with scoliosis and my son is borderline diabetic. I try not to give up with my own illness for my kids but at times I feel like it's not eating me up fast enough. That's why i'm here now, I know all you can understand and maybe help me smile just for a day.
10-12-2008, 12:57 PM
I am sorry to hear about the way your husband fails to support you and that is sad. He should understand that Lupus is a serious illness. I think that you need to take good care of yourself the best that you can. I hope that we can be of help here for you and make you feel better. There are a lot of nice folks that come in here and there are a lot of us with SLE Lupus. Please keep posting.
10-12-2008, 05:45 PM
Gentle hugs to ya Yvonne and welcome,
As Kathy has said, there are a lot of very nice and supportive folks on this board.
I'm not diagnosed. I've had a positive ANA as well as a boarder line and a negative ANA. I have the rashes and arthritis plus a few other little goodies.
What I do not have is a rhuematologist who thinks that lupus is a real illness. She feels that it's a catch all phrase that doctors use when they don't know what's wrong with you.
She has put me on plaquenil, which I'm pleased about. It is helping. My husband just wants everything to be okay and to act like nothing has changed.
He is slowly accepting the fact that things are not business as usual. Mostly because I put my foot down on activities that I can no longer do with out suffering after affects. ( sorry my spelling is horrid when I'm tired and I am very tired)
Please feel free to say what you want. Folks here are great sounding boards and we really do understand. There is not alot of formality on this site. It has a warm family feel to it. :)
10-13-2008, 05:20 AM
Hi ya Yvonne...
Welcoming you with a tight warm hug...
We can't suck up Lupus can we? If only we could, we would all be well or we would be a mess behind closed doors.
The stress of sucking it up is very stressful, not a great thing for us. Creates more illness and then one never gets on the road to remission. Would your husband be willingly to read books on Lupus. Their is one called the Lupus Book, Third Edition..A Guide for Patients and Their Families.
It brings an understanding to what Lupus is, can be and etc. It also has great information for us, how to cope, to care, symptoms. A wonderful read.
It is important you care for yourself, eat. All things affect Lupus. Check out the Stickys in Lauri's Lounge Forum, way to prevent flares, to care for yourself.
Some of us have spouses that are not on board with our health, some of us get minimal support and some with the utmost support. But one thing I know in all cases we still have to care for ourselves, our spirit. We all want undying support, but unfortunately it doesn't always happen.
I know it hurts as we gauge their love based on their support...but I believe it is important that we too love ourselves enough to care for ourselves so we can be their for your children.
I am sorry you are going it alone....
What are your new symptoms, Yvonne?
Are you able to seek one on one counseling to help you with your emotions, to handle his denial, your childrens' illnesses, your illness.
I know you will find a lot of support here, unconditional love...care. A place to learn...a lot of people care, we all do here...
We will listen, suggest, share our experience in hopes it will help you too. Sharing of yourself helps us too...
Always here for you, just a few strokes of a keyboard away...
Be well I ask..