Monday, September 17, 2012

illness and explanations

How do you explain chronic illness to a four-year-old?  When Grace was a baby, telling her that Aunt Laura's legs were big boo-boos worked.  But she's older now and wants to know why.

I have lymphedema in both legs.  When I was nineteen, I had ACL replacement surgery--college musical auditions went horribly wrong and I shredded my original one.  See, when a lymph node gets damaged, your body can't repair it.  Neither can doctors.  Nobody knows why or how, but sometimes this leads to lymphatic fluid leaking into tissues, which leads to chronic swelling, paper thin skin, problems with dead skin sloughing off, infections, and in about 10% of lymphedema cases, a depressed immune system.  The affected limb also doesn't heal easily.  And to make matters worse, there are only about two schools in the US that even teach about the disease.  There are no drugs, no surgery, and no way to tell how long I have.  In my case, it started in my left leg, and it didn't get bad until I was scratched by a cat.  What started as a simple scratch ended up a huge, weeping ulcer covering the bottom of my leg.  It took two years after the weeping started and seven doctors to find out what the problem was, and then lots of compression and physical therapy to get it to heal.  I can't even count the number of times it got infected.  My leg is covered in thick scar tissue from it.  (which lends credence to the 'it's a booboo')  The lymphedema spread to the other leg, too.

If I'm not careful, it breaks open again.  Infections can land me in the hospital and there's a real risk that someday I'll end up a double amputee.  And that's if it doesn't spread.  There's about a 90% chance that I won't be around to watch the girls grow up.  I may not be there when they graduate from high school and college and get married.

Unfortunately, I'm one of the 10% with a depressed immune system.  Which means that I spend a lot of time fighting off minor illnesses.  Which I usually get from the girls.  So as much as I love 'em, they really do make me sick!  ;) But I'll take the trade off.  Sure, it's not fair, but I'll take what I can get.  Things like pregnancy are a horrific risk for someone with my disease.  It isn't communicable.  It's just a broken bit of my body that can't be fixed.  Bad luck--not everyone with damaged or missing lymph nodes develops lymphedema.  Medical science isn't far enough advanced to know why some people develop this.  It's usually a disease people develop when they're old...  But I was in my early twenties when we found out.

To make matters worse, I can't leave my house to work, and I have to spend most of my time with my legs propped up to help the lymphatic fluid drain  (which makes me stinking nauseous most of the time.)  Lymphedema treatment is like having morning sickness... only you never get the baby and it never really goes away!  Your lymphatic system is part of what cleans your blood of the stuff your body can't process.  From there, it goes into the kidneys and then out.  But with lymphedema, all that garbage gets dumped below the damaged lymph nodes.

In some ways, it's a mixed blessing.  It's painful, uncomfortable, nauseating, and has caused me to put on a lot of weight because of immobility.  I have massive physical limitations now that I didn't used to have.  But because of it, I get to kiss owies, and give cuddles and tickles.  I get to be mommy for 40 hours a week when Joanna has to be at work.  I get to spend time making one-of-a-kind clothes for my girls and love and teach and spend more time with them than most aunts.  My disease has made my life a lot harder... but I'm not sure I'd change it.  After all, in a weird, twisted sort of way, it gave me the freedom to take care of my girls.

"And it is still true, no matter how old you are, when you go out in the world, it is best to hold hands and stick together." --Robert Fulghum

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