My Slice Of The Pie

@ whimsicalbeautiful who stated that she’s pissed that she makes the same working hard through pain, but I live off the government and get aid.  First off I have Multiple Sclerosis.  A disabling, unpredictable, invisible, and incurable disease that will slowly take the control of my body away from me.  I’ve already suffered from sporadic paralysis through out my entire body, requiring large doses of steroids to be given through IV.  I suffer from MS related fatigue (as do 85% of other MS’ers) which is so debilitating I cannot work.  What pisses me off is that people who assume I’m sitting on my ass at home living off your hard earned dollar.  I don’t want this!  I don’t want to have to choose between caring for my family of five, or working.  I had to quite my job because I was in and out of the hospital so much I couldn’t take care of my daughter (I was a single mom at the time).  I went to school just ten hours a week to become nationally certified as a medical biller and coder.  Something that sounds easy, but isn’t. 

I could barely handle the ten hours, and the work of taking care of my child and I.  I would consistently end up in wheelchair, unable to see clearly, slowed slurring speech, paralysis in arms and hands, and thus needing more steroids.  At one point I became so exhausted and stressed I had break-though seizures and landed myself in the hospital.  On top of the MS I also have a seizure disorder requiring medication.  Breakthrough seizures are when the seizures break-though the protection the medications provide.  Yep, I was that exhausted and stressed out.  Exhaustion and stress are also triggers for MS exacerbations.  I won’t even get into what I would go through for a week with the side effects of having 1000 to 2000 mg of Solumedrol pumped into your veins.  Let alone the damage it does to my heart and arteries.  MS won’t kill me, but the treatments sure will.

No.  I’ll get back on point.  I worked very, very hard to get where I was career wise.  I was poised to move into management at 25 years of age and really start an actual career, instead of just a job.  I loved what I did.  I miss working!  I miss making an actual contribution. 

I was unable no matter how hard I tried to keep working.  And believe me I tried.  I worked through pain, through cognitive issues and short term memory loss, through the most extreme fatigue only MS’ers know about.  I took huge pay cuts for time off because I couldn’t get out of bed.  I worked through guilt of being so exhausted I couldn’t play with my six year old daughter.  Instead I would crash on the couch, while she got herself ready for bed, and would wake me up so I could tuck her in.  

She is another victim.  A silent and untold victim to my disease.  In fact that’s what really drives my anger against anyone who thinks I’m eating bon-bon’s watching while watching Oprah.  No one even realizes just how hard and terrible this was for my daughter.  How fast she had to grow up, no matter how hard I tried to keep that from happening.

It was then I realized I had an even more important job then working, and making a “contribution to society”.  My daughter’s well being and happiness.  She is my job and contribution to society.  She is my world, my soul, my life.  I couldn’t perform that job, while working the traditional one society expects me to. 

I still work very hard and through the fatigue, and flare ups of symptoms with my now family of five.  When I met my husband he was a strong, energetic, professional making around $50,000 a year.  We weren’t rich, we didn’t want to be.  We were able to live comfortably, and made all the responsible plans adults should make in combining their lives and their money.  We planned to get out of the small debt we each had, and together it would be possible.  We were going to save for a small modest wedding.  We thought about buying a house, but were happy to rent an apartment until that was possible. 

Then August 1st hit.  He was in California and experienced the hallmark symptoms of a stoke.  Slurred speech, numbness and tingling down the left side of his body, unable to write.  He went to two hospitals, but because he didn’t have insurance at the time he received sub-standard care.  After twelve hours, four of which he spent on a gurney in a hallway with no doctor or nurse to see him once, he felt well enough to get up and make his way home.

He is now half the man he used to be.  He is in constant extreme pain, suffering from Moersch-Woltman Condition or Stiff Person Syndrome, a rare debilitating and incurable disease.  He’s needed a pacemaker, now uses a cane, and recently we have found his has paralysis in his throat, his stomach, and something wrong in his intestines due to constant blood in his stools. 

He has continued to look for work, irregardless of the fact that he could barely keep up with a few household chores.  No one wants to higher someone who’s ill.  And even though you can’t discriminate against someone for their disability of illness, it was clear employer’s did.  Now the unemployment benefits have run out, and we live on my disability income alone.  A family of five living on $20,000 a year.

On one hand it was a good thing because my husband has not had insurance until now leading us to finding out the recent paralysis issues.  We couldn’t afford the procedures before, or his medications.  The other hand, we have less money and in order to make sure our kids have insurance, and food, we need medicaid and food stamps. 

So I ask you whimsicalbeautiful, does this sound like we choose for this all to happen?  Does it sound like we are having a good time living off the government while we watch everyone else work for our meals?  WE WANT OUR LIVES BACK!!! 

I remember a day when we were registering my husband for an umpteenth procedure, and being told the hospital’s financial aid would not cover it (Even with financial aid my husband is about $30,000 dollars in medical debt).  While the rep went to go fix the issue, I watched a woman in her office make phone calls.  I thought out loud “I wonder if they realize how lucky they are to have a job?”

Do you realize how lucky you are to have a job?  Do you realize, no matter how much you may hate your job, or however crappy and terrible it may be, just how damn lucky you are?  There are so many people in my shoes, irregardless of why, who would love nothing more then to let you stay home so they can have your job.

It seems you are unhappy, to put it lightly, and feel you aren’t getting a fair shake.  I can empathize with that quite sincerely.  But don’t take it out on me.  Don’t take it out on those of us who did not ask to be in the situation’s we have found ourselves in. 

You should have the insurance you and your husband need.  You should be able to make a decent living, and not be a slave to the banks, and the debt required to keep up with the rising prices of everything.  This is what the 99% movement is all about.

This is why I shared my story.  So I can be a voice to others in the same situation, so others can see different perspectives of the same national problem.  I would rather you share your story as a force to help, then a force to shame and that some how you are better than others because your not receiving government assistance.

If anything those who need that assistance should be able to receive it without it requiring great sacrifices in other parts of the their lives, and without others judgement.  I hope you will choose to become a part of the solution, and direct that anger at those who truly are the problem.