Hi my name is Beth, I am 39 years old and have 6 children. I have Lupus and Fibromyalgia. I am very ill.

We live at a beach so for 2 years my doctor treated my rash as sun poisoning, it wasn't until I saw a public service announcement on the television for lupus did I start putting my strange symptoms together as a real disease. I went to a dermatologist who did a punch test on my face and it came back positive for lupus.

Oh Boy was my family physician shocked, he had even suggested once that I go see a psychiatrist because he didn't believe that someone could have as many complaints and symptoms as I did. Thank goodness the Lupus Foundation sponsored that public service announcement that I saw because I was finally able to put a name to the way I was feeling.

For the last four years my condition has deteriorated rapidly. One of the main reasons is that I am one of these people who has a low tolerance level to medicine and I get every side effect there is, especially the malaria drugs. My rash has spread to both my arms and is now working its way across my shoulders, my arms stay swollen and lumped up and the worst spots stay so hot that you can actually feel the heat when you touch them.

The Lupus has effected all of my organs as well. I have swelling around my heart that makes me have terrible chest pains and I have lost all bladder control. In the last two years I have started fainting, I've even fainted several times just sitting on the couch talking with friends and family. The worst fainting spell I had was while I was sitting on the toilet, I hit the floor and my mouth hit the metal vent. I bit my tongue half way off and shoved my front teeth up into my gums. That was really scary coming to and seeing blood everywhere but not knowing what had happened. I no longer drive anymore because I am afraid that I will faint and hurt myself or someone else.

My bones have become so brittle that I broke my foot by simply getting up off the couch and I fractured my ribs by coughing at one of my sons baseball games. My abdomen stays so swollen that I have bruises all over it and I look like I'm 9 months pregnant. When my fibromyalgia flares up in my hips I have to use a cane to get around.

I try not to use my cane often because my 10 yr. olds friends make fun of me to him and it really hurts his feelings. Children can be very cruel sometimes, once while I was having a bad rash flare up on my face a child in the grocery store yelled " look mommy that lady looks like a monster!". That hurt my feelings so much that I didn't leave my house until the rash was gone.

This disease has affected my whole family in so many ways. One of my boys was so devastated by the physical changes in me that he tried to kill himself by huffing gas because to him I have become a totally different person. We have all been in counseling for this for the last three years but he still has a lot of anger inside of him. Sometimes he vents this anger towards me but I try to remember that it's not really me that he is mad at, it's my disease. Unfortunately he has gotten himself into a lot of trouble with the police since then and the 25th of this month the court is going to send him away to a Marine School to try and straighten him out. This is going to literally break my heart so please remember me in your prayers. He has seen so many different psychiatrists in the last few years and the one thing they all agree on is that his behavior is because of my disease. If you could only see the mountain of kleenex piled beside me right now, this is harder than I thought to write about.

I received a call one morning from the elementary school asking me to come to school and pick up my 10 year old son Chris because his teacher had found him sitting in the corner of the library clutching a computer print out that he had printed from a dictionary about Lupus. I had no idea that he was that concerned and upset about my illness. I contacted the Lupus Foundation that day and they sent me several books and a video and I went to school with Chris and we had a show and tell about Lupus. He has not had any problem since then. I guess I thought that he was too young to comprehend that something was wrong with me, boy was I wrong. If you have a disease and if you have children I beg you to sit down and talk to them about their feelings because even if they don't utter a single word to you about it, they are thinking about it and sooner or later the tears are going to start flowing.

Because the other four children are grown they cope well with my illness. In fact they treat me like a china doll at times which kind of gets on my nerves but if I need them to help me or buy me something they are right here for me.

I am also fortunate enough to have about 23 other kids, all friends of my kids that call me mom and check on me on a daily basis. This past Easter we had them all over to eat dinner with us and of course I made them Easter baskets. Sometimes it gets a little distressing when they all show up at my door with problems and needing advice at the same time but somehow between my husband Keith and myself we have managed to deal with all of them, on issues ranging from drug addiction to pregnancy. It takes a lot of listening caring and love on our parts, especially when I'm having a bad flare-up but on the holidays when they all show up to show Keith and I that they love us and appreciate us it makes all the sacrifices worth it. Even if we don't have a penny in our pocket we feel like the riches people on earth to be surrounded by so much love.

My husband Keith has his moments in dealing with my lupus. He works 50 to 60 hours. a week and then comes home every night and cooks, cleans, does the laundry, takes care of the kids, takes care of me and whatever daily crisis we are heaving. Believe me with a group this large we are always having some type of crisis! So when he blows up at me I try to understand that he is carrying so much on his shoulders and he just needs some type of relief valve. Normally I do handle his stress by just letting him ramble and then he's done and it's over but when I'm feeling real bad I sometimes blow back up at him. I do get angry sometimes just simply because I'm so sick. I want to leave my house and do normal things like grocery shopping, going out to dinner or a movie, taking my kids for a walk on the beach, etc. but it is physically impossible. Sometimes I see the hurt in my families eyes when I can't go to special functions with them, especially around the holidays when Keith's employer has dinners and everyone brings their spouses except for him.

I do occasionally take the bull by the horns and go out and enjoy life, this past Mothers Day my kids and Keith took me to a Wynona concert. They had to literally carry me up the stairs but they got me there and that was the best Mothers Day of my life. We all sang and yee hawed so much that everyone sitting around us was dying laughing, I guess they thought we were a bunch of loonies but it was the first time we had all gone out together as a family since I became sick and we had a wonderful time. I even got so excited I yelled Happy Mothers day to Wynona when she was in between songs and she looked straight at me and said thank you girl, you too! On the weekends we play a lot of music and spend time talking with each other as a way of relaxing. Our music interests are so diversified that we'll be playing country one minute and rap music the next, I think that's why are kids friends think that Keith and I are so cool. On a sentimental note my kids have the soundtrack C.D. to the movie " Soul Food " and if I'm really having a bad day they will put it on and play the song " Mama " by Boys II Men and make me get up and slow dance with them. It makes me cry every time but sometimes that's what love is about.

Before I became ill I was a very active person. I owned my own business and I volunteered two days a week at my kids schools answering the phones and fixing boo boos in the nurses office when any kids came in hurt or sick. I have always felt that volunteering at my kids schools showed them that I was interested in them and their education enough to get involved and you could see the pride on their faces when they would walk by with a group of friends and brag " hey that's my mom." I also did alt of volunteering and fundraising for several different senior citizen centers. Helping them raise money to buy ceiling fans, food for the needy etc. I have also spent the last 15 years of my life filling medical bills and medicare bills for seniors free of charge. I have even held appeal meetings in my office where medicare would reject someone's claim and they would send a state representative in to talk with me and the senior citizen about it. I even once helped a lady from losing her home and becoming literally homeless because she was left with so many medical bills when her husband passed away, it was a hard battle and I even had to get a Senator involved but we forced her insurance company to pay and she didn't lose her home. I did all of this for free because medical billing companies charge these seniors 10% of each bill to file them and actually get away with it! This totally outrages me..

My undying compassion for senior citizens comes from me being blessed by having the most wonderful and loving grandma on the face of this earth. Sadly she passed away this year and I have been left with a big hole in my heart but I do talk with her often in my prayers and my dreams. She was the type of person that no matter what you had done or what type of problem you were having she would forgive you and give you unconditional love. I was an only grandchild so my kids brought her a lot of joy. Because she taught me to help people any way that I could I started doing all the volunteering for the senior citizens. It simply makes me feel good inside.