Just life


I have finally begun the lupus journal for the lupus foundation.  It is being looked at for a national ad campaign that is going to be done to raise awareness of lupus.  It’s been a little bit of a struggle for me so far because I just don’t like to “gripe” or “whine” about how I am feeling or my emotions about Lupus.  I have found that the more positive I am about life, the more upbeat I can be, the easier it is to deal with the ongoing battle that is raging in my body.  But, for this project I have had to be honest, and take a look at myself, from the perspective of Lupus, and get real in what I write.

One of the things that I know for sure about myself is that I am a fairly jealous person when it comes to relationships.  I try really hard to keep a handle on that because it can tend to be a very unattractive thing.  But, lupus has added to that emotion for me, especially in my marriage.  There are times, I hate to admit it, when I find myself having a little pity party, telling myself that my husband deserves better then some washed up woman with a chronic illness.  When I find myself doin that it usually leads to fear and wondering when he will find someone better then me, when he will leave me, and when he will fall in love with someone else.  Lupus is a forever illness.  It never goes away.  Unlike cancer you can’t have chemo and have it vanish, (I’m not say lupus is more devastating then cancer AT ALL) it stays with you forever.  So, I think about those things.  Yesterday was one of those days.

I had a horrible migraine yesterday.  I tried to hide it all day at the office from my husband.  I wish I could have hidden it altogether but by the time I got home it wasn’t possible for me to continue pretending.  I landed flat in bed for the entire night.  Now tell me, what husband wants to come home to stuff like that?  I realize you marry for better or for worse but technically most people don’t think about major illness being a factor when they get married.  Maybe they should but it isn’t like that!  So, yesterday was a bad day.

I often wonder if my kids wished they had a different mom.  I can’t always do what they want to do when they want.  Often they have to do things without me.  What kid wants that?  Again…pity party.

But, today came.  Today is a better day.  Today I feel better.  Only a slight headache residual from last night.  And I am going to the movies with my daughter later.  So, today, I”m in a better frame of mind.  Don’t get wrong, my mind still wanders…but…today…it is wandering where it should be…on the positive side!  I just wish every day were like this one. 

These are days when the fight doesn’t seem so bad!

5 thoughts on “Just life

  1. anonymrs says:

    Awe, you made me cry. It’s great you’re being authentic about this. Not everyone can fight and be strong 100% of the time. Your openness has touched me.

  2. sweetiegirlz says:

    Every thought is always magnified when you are ill. Try not to worry, (as trite as that sounds) just rock the house with hubby on your good days, and as for hiding headaches from him, you need his support!! feel betta ((((hugs-a-million)))

  3. rvewong says:

    I don’t think there is anything wrong with jealousy, it’s what you do about it that matters.

    When you’re going through a rough time it’s pretty hard to imagine anything positive about it. But here is one; Rough times gives you a better appreciation for the good things in your life.

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