Life expectancy — 5 years.

Canyonlands 2007That would have been the average life expectancy of a person diagnosed with lupus 40 years ago — 5 years.

Twenty years ago, when my wife was diagnosed with it, the life expectancy was — possibly a normal life expectancy.

Karen was in pain, she was weak, she tired out quickly.  One doctor dismissed her symtoms as being “in her head.”  She made an appointment with a different doctor in the same clinic.  He didn’t know what it was for sure, but he was suspicious of the rash and sent her to a dermatologist.  The dermatologist identified the disorder and lined her up with a specialist in Little Rock.

She was diagnosed with lupus and other related disorders, including fibromyalgia and polymiositis. Fortunately, through the care of this doctor and doing what she is supposed to do, she has been in medicated remission for many years.  When she backs too far off of the meds, symptoms start to reappear, so she must maintain a low level dose of them.  She does have pains related to the disorders and she isn’t able to build strength easily — it has to be slow and gradual.  Other than that, though, she lives a normal and healthy life.

Today, she went to a dermatologist for a small rash that has been rather stubborn.  It turns out is is probably related, so she is going to have to be a little more careful with staying out of the sun and/or using sunscreen.

It was the same dermatologist that diagnosed the lupus on August 23, 1988.  It was the first time she’s been back since he referred her to the specialist.

How cool is that?

Note: the picture above was taken last September about a mile out on a trail in Canyonlands National Park.

family, health, Uncategorized

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  • Writer Dad Aug 28, 2008

    Really cool.

  • XUP Aug 28, 2008

    Very cool. What’s not so cool, though, is all these immune-related diseases and disorders that are plaguing a huge percentage of the population. There has been a tremendous increase in these sorts of things. Our immune systems are being compromised by what? The environment? The food we eat? The air we breathe? The water we drink? It’s frightening. My daughter is battling an immune-related disease, too. They know so little about these things — mainly they just prescribe immune suppressants and those, in the long run are not good either. I’m glad your wife has been doing so well though. I know how tough it is when your own body attacks you.

  • rummuser Aug 29, 2008

    Mike, we are beginning to learn more about each other by and by. I can relate to what you are going through as, I have been the primary care-giver for my wife for the past eight years after she had multiple cardiac and cerebral infarcts. She is medically managed and her memory does not function all that well. She is therefore very reticent lest she goofs up in her conversation and is totally dependent on me for her social graces.

    What this has made for me however is more important. It has given me a purpose in my life after retirement. Seeing to that she is comfortable and contented gives me a great deal of joy and in a way that I never knew possible, humbling.

    Her Physician who we see every few months keeps warning me that I should live my life too lest I too become his patient! It has not happened yet and I doubt that it will in the foreseeable future. I keep myself quite busy and fit and pray that I am around for her for as long as I am needed.

  • Vered Aug 29, 2008

    I have tears in my eyes!

    I am SO HAPPY for both of you that Karen can lead a normal life.

  • Urban Panther Aug 29, 2008

    Fantastic! My brother lived in chronic pain and at first had doctors write him off with ‘it is all in you head’. Then he was misdiagnosed with chronic fatigue syndrome. Then he was misdiagnosed with fibromyalgia. Finally, he was correctly diagnosed with candida. A year of an extremely controlled diet flushed the yeast from his body. He still needs to be careful about what he eats, but for the most part he is pain free. All this to say, auto immune disorders seem to be a fuzzy area for doctors. What I find frustrating that instead of them admitting that, some simply dismiss you, and it is up to the patient to figure it out.

  • Thanks for sharing your story…I’m so happy for you both. My daughter has fibromyalgia and life-threatening allergic reactions to chicken, but she manages to keep living a full life. My heart goes out to you all.

  • teeni Aug 30, 2008

    Wow! Mike, that is some crazy info about Lupus. My sister also has Lupus. She has the discoid version and was misdiagnosed for about a year while she was trying to find out what was going on with her skin. Now she is under the care of a Rheumatoid Arthritis doc and seems to be doing well. She also must avoid the sunlight though. I am so grateful that your wife and my sister were given better odds than those diagnosed 40 years ago. I love that picture too.

  • Jay Aug 30, 2008

    That’s a very warming and uplifting story. Very cool indeed! And she’s so lucky to have you!

    I have fibromyalgia, and interestingly, I am a lot better if I keep away from yeast, so who knows – it may be related to candida. The docs ain’t saying. But they seem to know so little about this range of disorders.

    I believe the plague of auto-immune disorders is caused in no small part by pollution of our environment and of our food. Vaccines contribute too. My Mum was a healthy active 84 year old until she was persuaded to have the pneumonia vaccine, and almost immediately she began to suffer frightening pain and disability. She has been diagnosed with chronic inflammatory polyarthritis and is now registered disabled and cannot even knit anymore, something which used to give her an enormous amount of pleasure.

    My own fibromyalgia, and also myxoedema, appeared within months of my being persuaded to get the pneumonia vaccine. I haven’t been pain-free for much of the decade or so since then.

    Thank heavens for the dermatologist who recognised what your wife was suffering from and referred her to the correct specialist. Some people go undiagnosed for years.

  • chris Aug 30, 2008

    Very cool indeed. There have a couple of relatives that were diagnosed with lupus and thank God for modern medicine they are still with us today.

  • Mike Goad Sep 23, 2008

    Replying to old comments… did I ever tell you about my procrastination?

    @ Writer Dad – Thanks

    @ XUP – Thanks. I agree to some extent. I also think part of it is better diagnosis and people living longer.

    @ Rummuser – What we are going through is a pretty normal life. The hard part of this really was the early days 20 years ago when we didn’t know what the problem was and until the medication had it under control. When it was first diagnosed, I was very worried that it would be much, much worse and, with others that we have known, it was. We’ve been fortunate.

    @ Vered – Thank you!

    @ Urban Panther – That’s great that they were able to finally diagnose that for your brother!

    @ Cheerful Monk – I’m glad that your daughter can live a full life. Those disorders can be very challenging.

    @ Teeni – Thanks. Karen doesn’t have to be super careful of the sun as long as she uses plenty sun screen. And I like that picture, too!

    @ Jay – Thanks! We are lucky to have each other. Thanks for sharing your information. Karen has been looking at some of those issues, too, but not with much intent on changing things since everything seems to be pretty much under control.

    @chris – Thanks! and thank goodness for modern medicine — for all its problems.

  • Tariqul Oct 23, 2013

    Do you have any suggestion about Fibromyalgia. Because my sister suffering this problem from last few years & she really Syndrome for this. She can’t take care her children properly as well as Can’t live normal life. I found some information about this but that was symptoms but I need take over suggestion.

    • Mike Goad Oct 23, 2013

      Actually, no I don’t. From what I understand, each case is unique. Karen’s case is such that she can live a normal life with medication. A friend of our daughter has it so bad that she is essentially an invalid.

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