Tuesday, May 22, 2012

Obviously it has been a while since I have blogged.  Maybe this time I will make it a habit.

I was asked by a couple different folks to blog about my life with lupus. I will do my best.  This will also be about everything in my life.  My God, family, fun and such, including my health issues.

Today is a beautiful day outside.  But, I can't really go out to enjoy it.  I leave the house to run errands, get to the doctor, church and family.  I do not go out to play very often.  The sun is an enemy to me.  In order to go outside to play and enjoy I need to wear heavy duty sunscreen, long sleeves, hats and should wear gloves. Should.  My sunscreen of choice is Aveeno, 85 spf.  I use a baby block stick of 55spf for my face.  This keeps the sunscreen out of my eyes.

Even with all that protection, it is possible to suffer the consequences for a few days after a few hours in the sun.  Example, I worked an outdoor show for selling my jewelry the first Saturday of this month.  I stayed in the shade, had on all my sunscreen and a hat.  It was in the upper 90's* so no long sleeves.  By the end of the day my body was very swollen.  The next day I was exhausted and still swollen.  The next was worse yet.  And by Wednesday, I was miserable.  Everything was swollen and hurting.  That is just the lupus.

 I also had to contend with the lymphedema that I've just been diagnosed with.  My legs and feet have been swollen for 2 years.  It was just recently found to be lymphedema.  Lymphedema is chronic edema due to improperly functioning lymph glands and system.  I am pretty good at taking things in stride, but this diagnosis really hit me hard.  Again, there is no cure. They say it is manageable. I was hoping for a little pill and be done with it all. NO!

I have to do massage therapy.  That part really doesn't sound bad at all!  I happen to enjoy massages.  This massage is to help drain the lymph glands.  I also have to do certain exercises daily.  No big deal, those are easy.  The next part is not so pleasant. In fact I got angry.  Not at anyone, but at what I have to wear.  I call it Body Armor!  That's what it looks like.  Each foot piece is separate and each part for the legs.  At this point I only wear the parts covering my feet and calves. This is NOT Tedd hose or compression hose.  This is "kevlar" for the legs.  It is black and velcros in place.  It must be worn 24/7/365 for however long they say.  Even to bed.  Then I must wear shoes over the foot part.  Shoes that go up over the arch of my feet.

Now, if you know me, you know I am not a lean person.  I am "well nourished".  My sweet hubby still finds me beautiful.  But you add size to CPAP mask and body armor on the legs and, well, let's just put it this way, there isn't a lot of appeal left.  You know what I mean?

I am currently wearing tubing on my legs until the armor is ordered and arrives.  I tried to wear it to bed, but I really don't like it.  I prefer to feel the coolness of the sheets against my skin, not the warmth of wrappings on my legs.  I know, I'm picky.  Yes, I know too, "if it helps.....blah blah blah!"  I'm not convinced yet.   I will however, give it a good try.  I will not guarantee to comply 100%.

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