I am a newbie
Hello everyone. My name is Kim. I am 30 years old. I am married to my first love, and we have a wonderful 8 year old daughter. My mother passed away form SLE 8-19-92. Her kidneys failed. SO you can imagine my horror when my Dr. said I had Lupus in December 05. I am one of those rare cases where I was diagnoised before the real symptoms started. My ANA was positive and my anti dna antibodies was 680. We kept redoing the test, I had no symptoms. I have back trouble, but otehr then that nothing. I have been able to stay in denial until recently. I am now getting symptoms, the fatigue, horrible pains in my ankles, legs, neck and hands. My most recent blood work shows cardiolipin antibodies. Another really scary thing for me, all my mothers troubles seemed to start with a blood clot while she was pregant. SO until that point I did not believe I had SLE. I am really depressed! I have a beautiful daughter, I had to have a hysterectomy 7-05, so she is all I will ever have, she is a my little blessing. I am her girl scout troop leader, I am a PTO classroom mother, I was suppose to be taking over as PTO president in April. ANd now I don't even know if I can take care of myself anymore. I was so happy living in denial. I really was. SO I am reaching out finally. I did all my research, got all my answers but I have yet to ask for support. It's now time to talk. Thanks for reading this far.
Welcome new friend, the best thing you could have done for yourself today - was to reach out. Believe me, there are literally hundreds of exceptionally caring, nurturing and very knowledgeable people on this site. All willing to be your guides, mentors, sisters, brothers, and yes - many of us are mothers - and I promise, there are enough "mommies" here to love you through this. This has been the absolute most comforting site that I have experienced and I highly recommend that you stay connected. Ask questions, there are many here who lived many years with lupus and can share their stories with you. Our administrators and the ever awesome, one of a kind "Mother" to us all, Saysusie will be by to introduce herself. You will fall in love with her immediately.
If I may, I want to encourage you to make a very real decision, right now choose LIFE. Choose to live every moment, of every day - with a heart of gratefulness, because God blessed you with an absolute angel for you to love, nuture, teach and to hold. You've been blessed to have a companion that some of us don't have. I understand, how alone you can sometimes feel when you are scared and you don't have your mother to hold you (we can never, I repeat never get to old to need our mommies).
All of us at one time or another have stepped into and walked in your shoes. You are in the right place to find comfort. I hope you will let the many "moms" here be your mentors, sisters, and best friends.....as many of them have become for me. You never need to go through this alone.
You are very worried, and understandbly so - make sure you talk to your doctor about your concerns.
We're here to help you, nurture you and encourage you. Ask questions and you will find so many people here that are ready and waiting to be your wings when you're too tired to fly on your own.
So hold on to hope, it will take you further than you think. Hold on to love - it will fuel your hopes to keep you going strong.
Hi, Kimmy. I can understand your fears, especially since your mom died of lupus. But one thing you have to remember is that doctors know a lot more about lupus than they did even ten years ago, and new treatments are being researched constantly. So that fact that your mom died of this disease does not mean the same thing is going to happen to you. And since your doctors already know that you are more susceptible to clots, they can monitor your symptoms and prescribe blood thinners if you need them. I have antiphopholipid antibodies also, and take two medicines to prevent clots.
I was diagnosed with lupus shortly after my youngest son was born, so I understand how much you worry about raising your kids. I won't pretend that raising kids while dealing with a chronic disease like lupus is easy - it isn't. But most kids are stronger and more adaptable than adults give them credit for - it's important to explain your illness to your daughter in simple terms she can understand, and reassure her that she will always be loved and cared for. It's also important to put together a support network ahead of time, so if you get sick suddenly, there is someone to look out for her.
The biggest adjustment for my kids was I could no longer play outside with them the way I could before, because the sun exposure would trigger a severe flare. I had to rearrange a lot of activities for late afternoon or early morning - I have family and friends who take them to baseball games and amusement parks ands the other outdoor things. I also invested in a YMCA family membership so they can swim and play basketball and do other things indoors instead of outside. There have been a lot of adjustments, but we manage, and I know you will too. The first few months are scary, and you live very much minute-to-minute, but you do find a balance, and learn to cope. And there are always people here to listen when you're overwhelmed and just need to vent.
I just wanted to ditto everything that has already been said and send you a great big welcome. We are very glad your have looked for and stumbled upon this great resource for support and information. Browneyedgirl is right when she said there is lots of friendship and mothering available here.
I myself was about your age when my medical issues began to exacerbate and I also had two children to raise and I was divorced at the time. I can't say it was easy but it is doable. Please remember what Marycain said about the more positive outcome for SLE patients in the past few years. I am terribly sorry your lost your mother to this disease but this does not have to be a repeat pattern for yourself. I am sending your hugs, prayers and wishes for good days ahead.
Welcome, welcome, welcome to our community! There are so many people here who are so knowlegable about this condition, the symptoms and the meds.
Here you will also find the best and most understanding friends you'd ever hope to meet. We understand each other better than anyone else.
I am so sorry about the loss of your mother. But, as it has been said, so much more is known about lupus these days. NOT ENOUGH, in my opinion, but the fact that you have been dx'd is a victory in itself.
I check in once a day, if not to update about me, then to read what's going on with everyone else, vent with everyone else, cry with everyone else, and pray.
You will get through this. I promise.
Thank you all for the warm welcome. I think this forum can really help me.
Welcome, I haven't been a member long but this site has been a real lifesaver