Lupus journal #1


I am still awaiting the arrival of the “official” journal I am supposed to use to write about my daily life with lupus.  Typically, I don’t like to think about how it affects me on a daily basis because I have a very busy life, lots of children, a husband and a new business to run.  So, dwelling on this fight of Lupus can become daunting and counter productive.  But, since I have been asked to journal about this life I have been given the opportunity to live, (not that I would have chosen it given the choice) I decided that, in order to broaden the scope of people who know about this disease I will “dwell” so to speak. 

Now, first let me address the word “opportunity” I used in the previous sentence.  I really feel that each of us is given a life, some are better then others.  It is what we choose to do with this life, how we determine to live it, that shows our true colors.  Many people have things a lot worse then I do.  And many people have things much easier. …..health wise that is.  Life wise there are many people who have truly sad and horrific things happen to them that I don’t think I could ever endure.  And somehow those people, many of them, over come those obstacles and go on to have amazing stories and amazing outcomes of success in their lives.  And, I believe, it is because of how they chose to deal with those “opportunities” that were presented to them, no matter how awful, dreadful, painful or sad they were. 

So, that is how I have chosen to look at this illness.  It has become an opportunity for me to increase awareness of it, to shine a light, so to speak, on what Lupus is and isn’t really all about.

Now on to the journal.  Like I said I don’t like to dwell on the bad stuff cuz it just tends to put a damper on my day.  But, I have been asked to do so, and so I will, for two weeks, try to let people know what it is like on a daily basis to live with Lupus.  I can only speak for myself, I cannot speak for others who have this disease.  It, for me, is a daily fight, one I live with and work through everyday. 

Today has been a realatively good day.  I have had a lot more energy then normal which is a huge and wonderful gift for me.  Today, I actually spent time with my husband installing the new pool cleaner, and didn’t find myself getting sick from being outside.  I did get bit by and ant however…LOL.  My main problem right now is that I have a knee that is the size of a bowling ball. 

I have had knee problems since I was a teenager.  I had my first knee surgury when I was about 14 years old.  Since then I have had 5 knee operations.  I had my last one about 2 years ago on  my left knee…and now…i guess my right knee felt left out so..now it’s the right knees’ turn.  The scary part of all of that is that for me surgury is a scary thing.  I guess it is for most people, but since I have several blood clotting disorders,and I am prone to infections I  have to be prepped for surgury with major doses of antibiotics and things, and it just is a frigtening proposition.  So, I am putting off going to the doctor for this one.  Until I can no longer stand it I will live with it. 

So, all in all today is a good day.  Today is what I wish all my days were like.  Unfortunately, tomorrow is another day…and I will probably not be so lucky.  but, I will cross my fingers and hope for the best!  For now, I am going to enjoy this moment…and this day!

2 thoughts on “Lupus journal #1

  1. jen; unperfect says:

    thanks for the comment on my own writing.
    i came and looked at this one because my really close [also slightly insane] aunt was diagnosed with lupus and some sort of cancer a few months ago and i wanted to see what it was all about. i’m really interested. good days hopefully will come to the both of you.:]

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