The Big D

Do you remember the day you received your diagnosis? I do and I had no idea what it meant. I was just glad there was a name for what I was going through. The doctor cleared me of being crazy or worse yet, a hypochondriac. The searching was over.

Relief quickly turned to apprehension and fear as I learned about the possible ramifications of a life with Lupus. It seemed during the first couple of years that life would never return to normal. The new normal was doctor appointments, never-ending lab work, medical bills we could not easily afford, fatigue, pain, sleeplessness, isolation, and a myriad of other issues that made life as I once knew it non-existent.

The diagnosis seemed to loom over us as a family. It cast a cloud over the present and the future. In one sentence “You have Systemic Lupus.” our lives changed-my life changed-forever.

A diagnosis is a good thing. Some of us with lupus search years for a diagnosis while other diseases are not as elusive. A diagnosis is the  process of identifying or determining the nature of a disease. To have a diagnosis means you know how to treat it-diminishing symptoms, improving quality of life and  extending it.

But a diagnosis can  quickly cross the line from being a good thing to taking over our entire life. It can impact how we see life and ourselves and how others see us if we let it.  We can begin to eat breath and sleep Lupus or MS or whatever illness we have. It can impact our families  and sometimes devastate them.

The only course of action is to keep the diagnosis under control-govern it, rule it, dominate it.  This is something we have to choose to do day by day sometimes moment by moment as we strive for autonomy from the diagnosis of chronic illness.

In this blog we will explore together strategies that have the potential to help us reclaim our lives, body, soul and spirit, from the diagnosis.

I hope you will join me on the journey. Leslie Rose K

Email address:

13 responses to this post.

  1. Posted by Emma Capretti on November 9, 2010 at 3:19 PM

    Great Job Leslie!

    I’m looking forward to seeing how this evolves.


  2. Well written, thank you for beginning. I will be reading with interest.


  3. Posted by Brenda on November 9, 2010 at 5:38 PM

    Looking forward to this blog Leslie! Great begining!! Blessings to you!


  4. Posted by Ginny on November 9, 2010 at 8:02 PM

    Great start, Leslie. Good idea!


  5. Great start Leslie, let’s hope we attract more people with a desire to confront their diagnosis and learn to control it.


  6. Posted by Tracy on November 10, 2010 at 11:13 PM

    Hey Leslie! Happy to join you on this journey. I’ll keep you in my favorites.


  7. Posted by Kathy on November 11, 2010 at 3:36 PM

    Hope this goes well for you Leslie!! Thanks for all your help. I do believe that this is a good form of support.


  8. A little word of hope…
    A dear friend of mine has had lupus for about 15 years – diagnosed after a nearly life-ending attack. Recently, on a routine checkup with her rheumotologist (spelling), she was told “if your blood levels stay this good, maybe this thing will have burnt itself out.” She said “It can do that?!” Answer, “Sometimes it happens that it calms and never flares again.” She told me this yesterday, and we cried in relief just knowing there’s a chance.
    So maybe…maybe…



    • That is wonderful news indeed. I read that in the Lupus Book by Dr. Wallace. I am in remission right now and the doctor said it may not come back like before. There definitely is hope. Thanks for sharing.


  9. Posted by Norina on November 12, 2010 at 8:08 PM

    Your first blog was very well-written. I know this will be a blessing to many.
    You go girl!


  10. Posted by Maria Reyes on December 29, 2010 at 12:01 PM

    Thanks looking foward on reading your blog. I don’t have Lupus, but have a painful condition called RSD. I have no one that understand my condition people can’t see pain so they think everything is ok.


    • It is very hard when people cannot see your pain and discomfort. That is very common with lupus also. I facilitate a lupus support group and the members find it very comforting to hear that other people feel the same way and go through the same issues as they do. Perhaps you can find a support group for chronic pain. The other difficult thing is when people always tell you how good you look. It is easier to bear when you have people you can laugh about it with. I pray the new year will bring better health for you. Leslie


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