Safety Net; the Hole Truth

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I have only had two tarot card readings in my life and both were free.  The first was offered by a hostess working in a DC restaurant whom I barely knew through some very sketchy people whom I also barely knew.  She did end up being spot on in her two predictions that it would take me a very long time to find love, and that I would someday rescue a very special dog or cat from a friend.  The second reading was from a bookseller in Miami.  She read my cards in the employee break room and again ended up being spot on in that I was struggling a lot with temperature and she repeated the prediction about a special animal coming into my life.  She actually had an accurate vision of me getting up in the middle of the night and turning the air conditioner on and off in my South Beach apartment.  I had not shared this problem with anyone at work, so it could not have been a conversation she overheard.

Although both card readers got it right, they both missed the big event in my life of being diagnosed with Myasthenia Gravis (MG).   Would I have wanted to know?  I don’t think it would have mattered in my case as it would not have changed much, other than I might have pursued a diagnosis earlier, when my double vision first started happening.  I did see an ophthalmologist in Florida who prescribed special lenses for me and ran some tests, but he was not concerned.  He missed the diagnosis as did an optometrist in Frederick, Maryland, but by then I was having other symptoms, so I knew enough to follow up on my own.  I went to another ophthalmologist in Frederick who trained at Johns Hopkins and he got it right away.  He came back into the examination room and said, “I want you to see a neurologist right away.”   I immediately replied, “I do not have a brain tumor.  I have already had a visual field test.”  He informed me that he did not think I had brain tumor either but that there were other diseases out there that I might have.  “Oh,”  I replied afraid to ask what those diseases might be.

When my neurology appointment came around the following week, it was pouring the rain.  I almost cancelled, but something told me that I needed to go.  Then I got very lost trying to find the office in the pouring rain, and almost cancelled again, but I kept on going.  I knew that something was wrong.  My eyes were feeling more and more tired and heavy on business trips.  I was having to put cold compresses on them all the time and my left eye was getting very droopy and lazy looking.  I was also having trouble chewing and my jaw would get this awful tingling sensation.  The neurologist took one look at me, did a brief neuro exam, walked out of the room and then walked back in.  “I am 99.9% sure that you have Myasthenia Gravis, but we will have to do some testing to confirm it.”  “What?,” I exclaimed, “That sounds like the subject of a Lifetime Original Movie.”   He started laughing and informed me that I would need my sense of humor for what was ahead.

Thankfully, when I was diagnosed I had two very important types of insurance, medical and disability.  As I began researching Myasthenia, I learned that most people end up being able to do only part time work.  At first in my case this was not true.  I was able to maintain my schedule, but eventually I was not able to sustain the long and fatiguing week of business travel.  When I move to Ann Arbor to work in the corporate office I was still, until my exacerbation, maintain a full time work schedule for several years.  Now with my treatment schedule, medication schedule and other part time job as my husband’s personal assistant, I cannot imagine having the energy to work full time.  So when I could no longer do it, I had a Long Term Disability Insurance Plan to provide a safety net until I could go back to work at least on a part time basis.  Having any type of illness costs huge amounts of money and without insurance I cannot imagine what would have happened to me.  My plasmapheresis treatments cost $3000 a pop.  Without receiving them monthly I basically would be a lump lying about on a couch.  At the time, when I needed them more often and after my savings would have been wiped out by the treatments and my mortgage payments, without disability insurance I would have had to move in with family or face the possibility of homelessness.

In today’s horrible economy I just do not know what people do, as insurance is the key to having access to care.  It is a sad fact I see all too often at work.  Those without insurance just do not get access to the care that they need.  They often have to depend on family to take them in or become homeless.  It is a horrible thought.  Luckily thanks to an office manager at Borders who, even when I felt young and invincible,  encouraged me (actually she ordered me) to check the box opting in for Long Term Disability Coverage (LTD).  I will never forget her words, “You never know when something really bad might happen to you and you might not be able to work.  You can’t afford to say no to a plan like this.”   Thankfully, I listened and signed up and later on when I needed to pay my mortgage, it was there for me.

So when I hear people yelling at political rallies that people aren’t entitled to health care or that the government does not bear any responsibility for caring for its citizens, I get very angry.  I was saved by checking a box.  When my continuing medical coverage was running out, I was fortunate enough to have the education and work experience  to secure a new part time position at the University of Michigan Health System.  My employer provides health insurance for part time employees.  Actually they provide a cadillac benefits package for their employees for which I am incredibly grateful each and every day.  My plan has very low monthly rates with a zero deductible and a zero out of pocket yearly maximum, so my earnings do not have to go towards paying for my very expensive treatments.  Very few companies and organizations are able to afford to do that today for their employees.  Even before the changes to our health care system UMHS did not have a pre-existing condition clause in their medical plan.  On my first day of orientation, I felt like the luckiest person on the planet to be insured under their plan.  I still do.

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