Archive for September, 2009

50 years

Did you know that lupus patients are being treated with nearly the same drugs as they were receiving 50 years ago? Did you know that new drugs have NOT been developed in the last 50 years to treat lupus?  The Lupus Foundation of America has launched a national campaign this year to highlight these tragic facts. For they ARE tragic. http://www.lupus.org/newsite/pages/zero-in-50.html

Lupus affects 1.5 million people in the United States and 5 million people worldwide. The numbers may be much higher given that it is a difficult disease to diagnose. 90 % of lupus patients are women and typically afflicts women during their prime child-bearing years. http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60

The Lupus Foundation of America has been working hard to promote research which will make a tremendous difference for people afflicted by lupus. Earlier this year they requested personal stories from people with lupus. I share my story which was published on their website. I’m sharing my words here today in hopes that you will be encouraged to help in our efforts to fight this disease. One simple way that you can help is by donating unused clothing and other items when they have drives. The Foundation auctions off these items to raise money to support research. It’s easy to do and really does make a difference.

Five years ago, after suffering tremendously, I was diagnosed with Systemic Lupus Erymathosus while living in Sweden. Frankly, I consider myself lucky to have been living in Sweden at the time, because it didn’t take the usual 5 to 10 years before a diagnosis was made. I take the usual medications prescribed for Lupus patients and hobble along in my daily life.

 Lupus affects me everyday. I am the mother to 4 young children. I am lucky that I had three of my children before lupus changed my life. Fatigue stalks me everyday as I strive to care for my family. We have cut out extra activities during the day because it tires me too much. I get sick more frequently and suffer from pain in my joints and body. And many times I wonder how lupus will directly affect my daughter or if my sons will be plagued by  autoimmune disorders in the future.

 For the most part, my life is pretty good, but constant doctors visits, frequent blood tests, and constant monitoring of my health remind me what a fragile thing good health is for a lupus patient. New drugs that more effectively treat lupus and its symptoms would make a tremendous difference in my life as a mother, wife, and person with dreams and goals.

 My greatest hope is that research will be conducted which identify the causes of lupus, drugs will be developed which better promote health and strength, and that my own children will be able to avoid much of the pain I have suffered.

 Perhaps it doesn’t seem as critical to stress research for lupus as patients don’t die immediately. In fact, many lead relatively normal lives. Most of us look like healthy people. But a life constantly lived with pain, fatigue, and sickness is one which no one should have to suffer. And suffering is a key component of lupus.

 I urge you to take action to fund research which make the difference in my life, my children’s futures, and the many people in the United States who suffer greatly from this difficult disease.


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Weighed in the Balance

    Ancient Egyptians had a funerary text called “The Book of the Dead”. Scenes from “The Book of the Dead” show the heart of the deceased being weighed against the feather of truth. I think it would be fair to say that it is a process of judgment.  It really is an interesting concept that I have been considering lately. In preparation for our trip to Philadelphia and Washington D.C., we’ve delved into  history books, biographies of the founding fathers and mothers, and read countless stories of the challenges of the Revolutionary War and the founding of the colonies. While we’ve mostly focused on books written for children the kids and I have come face to face with the weaknesses, imperfections, and mistakes of many of the individuals involved with the Revolutionary War and the founding of the United States.

   In a study of contrast and a moral and philosophical exercise that seems strenuous, I’ve been confronted with questions about slavery, women’s rights, morality and ethics. George Washington was honest, courageous and very noble. He also was a poor military strategist, losing many major battles in the war. The quarters kept for his slaves were spartan at best. But it cannot be denied that without his brilliant political ability and his integrity our nation would have never survived its first few years as a fledgling country. So how do we judge the man? Do we only look at his faults and weaknesses or do we celebrate his triumphs, ignoring his failures?

      These questions plague me as I look at political leaders, family members, friends, enemies, etc. One part of me wants to look only at the good for those I like and respect, while the other part of me has a tendency to demonize those I disapprove of. But neither approach is balanced or fair. Aren’t we, all human beings, a sum of parts? We see one another in complex ways. I suppose, in the end, that it isn’t up to me to make those final judgments. But it still doesn’t answer those moments when I am confronted, sometimes brutally, with both the weaknesses and strengths of a person. And I find myself wanting that extra amount of wisdom needed in those moments of revelation.

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I’m in a self-revelatory mood. And since I suspect that you all deeply care about discovering more about me, I thought you may appreciate these tidbits about my life.

When I was a little girl, I pretended that I had 10 boys–all with strange variations of the name Frederick. I find this so ironic and funny given that I now have three boys with a fourth on the way. I just don’t think I’m up to 10 boys.

I once made Macaroni and Cheese with sweetened condensed milk. I didn’t realize there was a difference between sweetened and evaporated milk. My younger sister was furious with me and accused me of putting sugar in the macaroni. It took her weeks to forgive me of the sin of messing with her favorite meal. And you can imagine how vile it tasted.

I once hit a huge bird that got stuck in the front grill of my car. It took forever to extract the bird and all the feathers.

I hated babysitting with a passion when I was a teenager. When my parents assigned me babysitting duty at my house, I always pawned it off onto my younger sister who was much better qualified by it. She always did take good care of my younger sisters.

When I was little, my sisters and I played Wagon Train every single Sunday afternoon. When I got bored of the game, I would dramatically throw myself off the couch, pretend that the wheel ran over me and then die tragically. Then I would leave the game and read a book.

I read nearly every book in my elementary school library, even the non-fiction titles. The librarian loved me. We had a great bond.

My sister and I got in a fight at my oldest sister’s wedding reception. I ripped her dress. Some enterprising soul got the whole thing on film. I am mortified to this day.

I went on a wagon train celebrating Wyoming’s centennial when I was 12. It remains one of my favorite memories. I met people from all over the country. I wrote to one elderly couple for years.

I once stole a big can of my mother’s bag balm (an ointment for cow’s udders which came in a green can. It was very useful at drawing out splinters and dirt from wounds.) and buried it in my sand box. I kept it there for years. I’m not sure why I stole the can, only that I really thought it was cool.

My last year of high school, while very rewarding and busy, was so stressful that I didn’t make any effort to join things my first year of college. It was blissful not feeling so busy and tired all the time. I didn’t even get sick once that year. Sometimes I feel sad that I didn’t get involved in more activities, but I think I needed that year to recuperate from the perpetual stress of high school.

I was called Miss Encyclopedia by my sisters. I was proud of the nickname. I also aspired to be the first woman president around the same time.

What are some tidbits about you that I don’t know about? I would love to learn more about you!

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