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Marcia

My Story Of Living With Lupus, Fibromyalgia, & Myositis

I guess I will start from the beginning. I am 30 years old. I have a wonderful family. I have a husband named Allen and 4 great kids. My son Mitchell is 6. I also have 2 daughters one is Erica 11 and Lisa is 10 but they do not live with me. I also have a 17 year old stepson named Thomas.

I have been sickly all my life. When I was 2, I started to have kidney problems. By the age of 3, I had to be put on dialysis. It was temporary. I had a surgery to help my bladder and then I cleared up for awhile. I still had problems but not as severe.

Then all through school it was a mess. In and out of the hospital for strange things. I even had to be pulled out of school for 6 months for my immunity. I couldn't be around other children. It was so low that I could get deathly ill.

I went through ups and downs like that for a long time. I met my first husband when i was 18. We got married and had the 2 girls and then got divorced. Not much to speak of there. LOL

I noticed that not to long after the divorce I had a lot of muscle and joint pain. I also had this continuous rash on my face. I told docs about it but was ignored. I met Allen a year later. He was the best. My husband before was not a very nice person. He abused me mentally and physically. I was so glad to have finally met someone that treated me with respect.

Allen taught me to drive a big truck. Which we did over the road. Well not to long down the road we found out I was pregnant with our son. So we both settled down. I quit and Allen got a local job. I had to go on bed rest immediately. With each one of my children I got deathly ill. I seem to go into toxemia.

Not to long after having our son I started to get really sick. At first it started gradual. By the time he was 6 months old I could hardly walk. The rash on my face was bright red across my cheeks and nose. I was getting soars in my mouth and nose. I got so weak at one point Allen had to wash my hair for me. He packed me from the bed to the couch and back.

The docs were stumped. First they thought I had hepititus. They took 2 tests both came back negative. All the time my blood work was going crazy. My white count was so high.

Next they sent me in for tests for spinal meningitis. Well they came back negative. Then they thought cancer or leukemia. That is when they did some extra tests. It wasn't my regular doctor. Two weeks later I got a call saying well it wasn't cancer but it was Lupus.

I went so long with out diagnosis it almost scared me to know. The time I went without one I went through a terrible depression. I really thought I was going to die and I didn't want to. It was so hard to understand why.

I knew 2 other people with lupus. So the first thing I did was ask, "What is this?" The only way I can explain it simply is I am allergic to myself. I am not good at breaking this disease down for I am no medical expert but I want to raise awareness on it. On my friend's sites, Jill and Sabrina have made some wonderful links for me and there you can read more on this. Please do and I am always around to email.

I got better over a long period of time. I went into remission. I still hurt in my knees and the rest of my joints but not as severe. Over the next few years I went into denial. I thought it was no big deal. BOY WAS I WRONG!!!

When I turned 29, I started to hurt again more severely. That was in July and by December I was getting to where at times I couldn't get out of the chair. I was going to doctors but the doc I had, chose to ignore me for a long time. I also decided at this time to file for my SSI disability.

I found new docs. They are great. I am so thankful but now all the time of ignoring my disease and bad docs has cost me some. I now also have been diagnosed with FMS witch is another auto immune disease. I also have asthma, severe spastic colon, and now they are saying Myositis. Myositis is a muscular disease that is also sponsored by the MDA association.

I am on so many meds that I feel like a walking pharmacy. This has taken its toll on us financially and mentally. I have no insurance and am fighting still for my disability. There are times I dont know if I am going to make it but I know with God's support and my family I can do it.

The beginning of this year I went through a pity party. I thought I was the only one out there with this disease. Then Allen went and bought me WebTV and ever since I have learned so much. I have found so much support through the internet.

I found the National Lupus Foundation and found out they had a forum and also found a lupus chat. Over a period of time I have made the greatest circle of friends and the best support a person could ask for. I got out of my slump. I found out that the greatest feeling in the world is helping others.

I met a lady named Chelsea and she had started making a quilt, which now has turned into several quilts, for people with lupus. Each block represents a person and has there name and diagnosis date.There are pics of the quilt. Also info on if you would like to donate squares or a name to it. If you know someone feel free to email me or go to her site and email her.

I also have made a great friend in a lady named Beth. Her story is also linked at the bottom of Jill's and Sabrina's site. There are so many I can't list them all but they are the greatest people in the world. They inspired me to decide to devote my life and time to raising awareness to this disease.

Here at our local lupus foundation in Kansas City I got the chance to show the quilt and speak on it at our spring seminar. I was so honored and scared. For the first time in a long time my life felt like it had a purpose. I now know I can go on and make something good of this.

Before lupus my life was very different. I was very active and loved life. Somewhere along the line I lost the desire to live. I now have found that again. I also have discovered when you have a disease like this you find out who your true friends are. I have lost some along the way. I also have met some of the best people in the world because of this.

The one thing I want others to know is this, be thankful for what you have. The world is a beautiful place and we are only here for a short time. In that time do something positive with your life. That is the greatest thing you can do. Look out for your fellow human. Most of all let others know you love them. Never let a day go by that you dont say "I love you" to those closest to you...

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