Lupus Journal


today I received an email from the Lupus foundation about an ad campaign that I am going to be involved in.  They have asked if I would keep a journal for two weeks about what it is like living on a daily basis with Lupus.   As some of you know, who have read this blog before, I tend to write little snippets here and there about life with Lupus and the way it affects my life,  my families life and how we live.  I try really hard not to get to depressing or morbid, or morose about any of it.  I pride myself on being a fighter of the disease and not a person who gives in to it and it’s evil ways (sounds like it’s human huh?) 

So, for the next two weeks, just as a warning, I may write a bit more then usual about life with Lupus, just so that my journal for the Lupus foundation and my blog can  have one voice.  It is so important to me that the world begins to understand this illness and the toll it takes on so many wonderful people.  There are many illnesses out there….horrible, dibilitating illnesses, sickness that takes lives, parents away from children and vice versa.  Those diseases, those illnesses get a lot of press…from heart disease to breast cancer, to prostate cancer, HIV and aids and the list goes on.  Lupus, I believe, is the silent killer.  It creeps in, seemingly unnoticed, hard to detect, hard to treat, and very often hard to live with.  But not many people know about it.  Most of us with Lupus don’t lose all our hair from chemo (although chemo is a treatment sometimes used to treat Lupus) we oftentimes look quite healthy.  But inside…we are falling apart.  That’s the really sad and hard part, the part that people can’t see. 

So, for two weeks, my life will be here, for all to read and see.  The ups and downs, the good days and bad.  I hope there is learning and growing for all of us who are involved in this adventure…yes I said adventure.  Learn with  me, grow with me, discover Lupus with me…and let’s discover a cure!

3 thoughts on “Lupus Journal

  1. Joy says:

    Thank you so much for visiting my blog. I loved your comment and hope you will come back. There are four of us who write and we have a new post and new question of the day, each day.

    I’m not very familier with Lupus so I’ll learn from you. I do know someone who has it but we aren’t close. Kind of like a daughter of one of my parent’s friends. I wish you all the best and will continue to check in with you. Thank you for teaching me something new. I feel it makes us all better in the end to know as much as we can.

    Thanks again for coming to visit.

    Joy

  2. aispinay says:

    I’ll recommend your site to a friend who is suffering with Lupus. I see my friend everyday and she is under medication with prednisone (75? Dosage * i don’t know if the 75 is ml or grams) and her body swelled all over more noticeable her face to the extent that she looks like a bread loaded with baking powder to gain size! And I feel helpless that I can’t help her.. all i can is to buy her a new face mask to avoid further complications on her situation.

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