I'm new here.

  I am a 26yr old female. I was told I was born with the Sickle Cell "trait". I can honestly say that came from my mom's side. Later on when I turned 17yrs old, I began to experience a few episodes of of painful weeks at a time. At first I ignored the pain , and thought it to be nothing . After while it became almost unbearable. That's when I found out what I thought was the "trait", was infact the Sickle Cell Disease itself. It became easier to understand since I witnessed alot of family members dealing with the disease before hand.

  I was just learning to accept the fact of the Sickle Cell, and live with it. Afterwhile it wasn't so bad. That was until I was 21 . Just when I MADE myself believe things couldn't get any worse, I was Diagnosed with Lupus (SLE). I didn't want to believe it. I was in denial for a while. I wouldn't even go to the doctor's because I didn't want to hear about it. All I knew was I was a young woman with two beautiful children, and was just starting to live life. This disease they'd diagnosed me with (unlike SC), was too unfamiliar to me. Believe me I wondered in cried for a while. Until I was mentally and physically fed up.

  I later on decided to embrace it, and come to acceptance with it as well. After talking to my family, I realized I should have embraced it earlier. That's when I found out two of my Aunts had past away from lupus on my dad's side. Best of both worlds huh .

  Now here I am. Im tryin to learn to live with life. Lupus has proven to be a very rare thing to alot of people. So it's been hard to find support. Now that I've found this forum, i'm hoping to understand a little better.

 

LivinMystory

If you want more information on lupus go to butyoudontlooksick.com read the spoon theory and look around the site. A good book is THE LUPUS BOOK by Dr. Wallace, check it out of the library or buy it but be sure you have the most recent edition because he updates it when enough new stuff needs to be added. I am glad you found our forum. This was the first place I found with people who were supportive and caring about each other. I actually had tried another forum but the 2 women who ran it treated anyone undiagnosed like crud and were always saying it was in the person's head. It was sad that they did to those who had yet to find a doctor willing to help what they claimed they had experienced. This forum has a bunch of really good and helpful people in it. Many who have had lupus for many more years than you or I and thus they have a lot more knowledge to offer.

Be glad your family acknowledges the lupus and SC problems. My family lost 2 people to lupus related kidney failure and another to complications from MCTD but until I landed in the hospital and came within inches of dying they still said that the 3 women who died and I were hypocondriacs with nothing wrong with us. My grandmother saw what was happening to me and remembered how she had watched 3 other family members die all with symptoms very much like my own, and heard the nurses talking about how it was too bad I hadn't been treated earlier and that it was sad my family was so unsupportive. She changed after that day. I guess it scared her and she got a wake up call by hearing the nurses talk about my disease. I know a lot of my family still denies that I am sick. I would love to have my family admit that we have a history of lupus.

Though, I do not envy you having SC and lupus. I cannot imagine having to deal with both of those.

 I want to say thanks to all the responses and/or welcomes to the forum. I am glad I've found such a supportive way of dealing with Lupus(SLE) & SC.

Hi Livn,

   Another welcome. I answered your other post before I saw this one. You have been through alot....((Hugs)). You have found a great group here for support. They have helped me through some rough times and I'm very thankful I found this site almost 5 years ago. You won't find a more caring, giving group anywhere else, in my opinion.... .

                                                                                   Babs