We don’t appear sick enough and I hear many complain about paying people to stay home.  That $1037.00 I receive in disability benefits has been a dream of mine since I was 15, when I got my first paycheck from Taco Bell and saw my deduction for Medicare and disability benefits.  Yes, this girl from Westminster, California is finally living the dream. 

 Imagine having nothing to do but go to frequent doctors appointments.  Those routine invasive procedures – I LOVE having a camera shoved down my throat annually and on March 2nd I finally got implants.  Yes, I have a port implanted above my right breast with a tube that goes into a vein that goes directly to my heart.  It’s done wonders for my cleavage.  Now when I get my blood drawn, instead of four or five sticks with an exploratory needle, it’s like girls gone wild.  I just pull back my shirt and BAM; I’ve got an IV in seconds.  When I received my first chemo infusion with it, had the oncology floor been a bar and port o-caths were drinks, I would’ve bought a round for everyone.  Imagine being able to use the restroom without having my IV in the vein on the back of my wiping hand.  HEAVEN!

 Many people with Scleroderma, Lupus and other autoimmune diseases have trouble getting disability benefits.  That disability usually is a gigantic pay cut after years of hard work.   Part of it is our inability to say no.  Yes, some of us are work sluts.  Yes, we can work a full 8 to 10 hour day, but what happens at the end of the day?  Let’s see….we pick up the kids from daycare, help them with their home work and feed and bathe them.  It doesn’t sound like much, but when your feet are so swollen that you can’t walk and stay on your feet despite the pain, it takes a toll on your health and psyche.  Swelling, possibly caused by our hearts working too hard to move faster that our bodies are capable, prevents us from moving from point A to point B.  An immune system already compromised by chemo to keep us alive makes us more susceptible to the germs our kids bring home with them.  My pulmonologist refers to my 7 year old as a cesspool for a reason.  We bathe our little nose miners to wash off the day’s accumulation of God knows what.

 We don’t do all of these things and more because we like to complain.  We do these things because we want to live a full life.  With or without children, as caregivers, lovers, grandparents, aunts, uncles and friends, we battle each and every day and some end up working ourselves into an early grave.  Should we dare be so bold as to request benefits we have paid into for decades so that we may remain on this planet just a little longer?  I know, now I sound like a nut.  But what’s so nuts about putting our families and lives first and not our livelihoods?  A job is important, but it should be last on our list of priorities, not first.  I’m not saying we all need to be slackers, I’m saying this “walk it off-shake it out-cowboy-up-and-deal-with-it” way of life is going to kill most of us before our time. 

 Kudos to those who can maintain their health and work.  I envy you.  Had I followed my intended career path, I would be a registered nurse, probably with a surgical specialty.  But not everyone gets what they want, that’s life.  It would be a dream if I could keep a job without having to take time off for flare ups or unexpected ER visits.  And honestly, that puts a larger burden on co-workers.

 I don’t say these things lightly.  I almost worked myself to death and I am grateful I was finally able to say no to my Social Security interviewer when she asked, “Can you work a full day?”  When asked that, it is almost reflexive to say yes without considering what happens before and after work.  A full day is from the time you get up in the morning, until you go to bed. 

 I hear constant criticism from even close family members that we shouldn’t, “Pay people to stay home.”  Good news everyone, you don’t.  Those who have been working have been paying into a system for years, so that burden is not yours.  And for those who have never worked and are using SS or disability benefits, I say, kudos.  They are taking care of themselves so they may take care of their own families.  People who take care of themselves can take care of their children or elderly parents and are doing society as a whole a great service. 

 Now, with every program, there is always room for abuse.  People who take advantage of the system are a minority.  So just get over it PLEASE!  It’s just a fact of life like sand in your PB&J at the beach.  It’s like avoiding the beach because you don’t want to get sand in your lunch.  Then one can say, “Just don’t eat at the beach”, but you are still going to get sand in your shoes. 

 So, I think I’ve covered everything. So those of you worrying about us free-loaders, you are off the hook.  You are not paying anyone to stay home.  Please, you don’t need to thank me for that good night’s sleep you will get tonight. 

 Here is one way to look at it; when on an airplane and experiencing a drop of pressure, you put the mask on yourself first, then the person who needs help next to you.  And if you need that metaphor explained, file that away so that when you are diagnosed with something and have trouble working, you will get it. 

Article written by staff writer, Karen Vasquez

Karen Vasquez is a mom of a 6 year old son, writer, blogger and patient. Symptoms of tingling and blue fingers baffled Navy doctors in 1992. She was diagnosed with Scleroderma at age 23 in 1994. Then in 2007 she was diagnosed with Sarcoidosis. Karen has had her share of medical “adventures” and tries to find the humor in them wherever she can. http://sclerodermasarcoidosisandboxwine.blogspot.com