Day 13 of Sarcoidosis Awareness Month: An Invitation to Spend a Day in My Shoes

NOTE:  this post was started on the morning of 13 September, however because of the events of the day it was not completed until 14 April. 



She awoke at 4:30; feeling it was early, she refused to look at her phone (the ‘clock’), opting to keep her eyes closed and lie still.   It was clear she was in trouble.  This is a classic Sarcoid day, she thought.  She could feel the dead weight of her body, especially her legs.  It was as if a herd of imps had ascended from hell, each poking a straw in her to suck out her life.   When the 0545 alarm came on, she ‘set’ herself to arise at 0630.  Surely I can get up by then.

The morning news/gossip/opinion/slander program came on, allowing her to relive the horror stories of the day before:

• A 73-year-old reserve cop shoots and kills an unarmed man.  At some point she opened her eyes in time to see a knee pressing on the man’s head as he lay on the ground.  Then there was a voice:  f—k your breath.
• A young woman is raped by several men on a beach while people are all around her, and rather than render aide, they record the incident.  A Panama City police official calls the perpetrators animals.  Her immediate thought was why insult the animals?
• Hillary Clinton announced she is running for POTUS.  While this may not be a horror story, she thought of the already egregiously nasty political climate and uncivilized behavior that has reached epidemic proportions.  Add to that being inundated by the idiots who would compel me to vote for Hillary because she’s a woman is just too much, she thought to herself.  Rationalizing that thought, she said aloud, pointing her right index finger (a habit when she’s making a point):  It’s not that voting for Hillary is in itself idiocy, it is voting for her because she’s a woman.

Time zipped by.  It was 0730 before she arose, plodding along at a snail’s pace, trying to remember her last productive day.  It is Monday, and she had to think back to the Wednesday prior for a day during which she did some solid, productive, billable work.   Breakfast was a simple smoothie – a concoction of strawberries, an orange, flax seeds and a scoop of Perfect Food (that’s the nastiest stuff she’s ever had, but it’s supposed to be nutritional).  Sitting at her desk, she tried to get a handle on her day, remembering a 10:00 doctor’s appointment.  Suddenly, she felt the rumbling of a volcano, inside her, and rushed to the contain the eruption.  She wasn’t quite fast enough . . . almost, but not quite.  After cleaning up the mess, and herself, she left for her appointment.

She stumbled into the office of XYZ Nephrology.  An older woman was at the receptionist’s desk.  The woman looked at her, and told the receptionist You should take her first.  Thank you, she said, but I’m okay.  And I’m new, so I probably have to complete lots of forms.   The two women sat back-to-back; they engaged in conversation while the younger completed her forms.  At some point, the older woman, reached behind and laid her hand on the shoulder of the other.   The comforting touch communicated to the other you are not alone.  

After spending about five minutes with the specialist (and wondering what he would bill for that precious time), she left the office.  Walking down the busiest corridor of this building, the one that accesses the crosswalk to the parking garage, she was near collapse when a man and two women just grabbed her, easing her down tot he floor.  Someone called paramedics.  Security personnel came.  Upon arrival, the lead paramedic determined they could not examine her in the hall, so he walked through the nearest door, the reception area for a cosmetic surgeon.  Skipping over the gory details, about an hour and a half later she was allowed to leave if she called a taxi to take her home.   Her day was over and it was only 1:00 p.m.

This occurrence is not new, nor is it uncommon.

There is an old saying, that you cannot judge a book by its cover. This is so true when people look at anyone and decide their intellect, character, education, credentials, or value. This is also true when people look at a Sarcoid patient and say well you look alright.  She I looked alright this morning. And despite that she felt the life draining out of her body.

She still remembers vividly, at a hearing years ago in an administrative court about the appeal of her application for Social Security disability, which had been denied. The representatives for the Social Security Administration and the administrative judge both thought she presented myself too well to be sick.  She was asked how did she get dressed, to which she replied my daughter helped me.  She was then asked who combed her hair, again to which she answered my daughter helped me.   She had been warned that she should not present herself at a hearing looking "normal.” It was suggested to her that she dress like someone who was so poor and/or homeless that she did not have proper clothing or access to grooming and toileting facilities.  To this day that is one of the most offensive conversations she has ever had. And also to this day she has never collected a dime of the Social Security disability for which she qualified, having been certified by three physicians, independent of each other, benefits for which she worked.

Every time she received a payroll check, there was indicated  gross income and net income, and the difference between those two numbers comprised various taxes and deductions for medical insurance and Social Security.  For 19 years, she has managed to more or less sustain myself. It has not been easy. In fact there have been many times when her body was pushed well beyond it's limits, just to finish a project. There have also been times when she needed medical care but did not have insurance and could not afford to see a doctor.  Had I been granted the Social Security disability she would have had a Medicare card 17 years ago.  As flawed as Medicare is, she would have been better able to access the healthcare she needed when she needed it, rather than having to wait and save and miss appointments and sometimes tests and procedures.  With the Affordable Care Act, she has been able to get insurance that she can afford and have access to health care when she needs it.  And the idea that there are people in this country who would rather her not have that kind of access is galling.

She has seen people come to the United States from other countries and get benefits that were not available to her.  She has seen companies and individuals get tax breaks and pay little to no taxes.  She has seen bloodsuckers (also known as politicians) line their pockets with ill-gotten gains from selling themselves and the welfare of their constituents and prostituting their own morals for their own benefit.

By the way, the Houston Chronicle, years later, published a story about that administrative judge, who had a history of rendering biased rulings against certain groups of people, of which she is one.   She filed a complaint and nothing ever came of it.  She has been scoffed at an ridiculed for using accessible parking places because people look at her and determine her need for the space.  The only thing she has to say to them is spend a day in my shoes and then let's talk.

Keeping The Strings Straight

Weighing in once again on a recent video snippet, taken out of context, to cast a negative light on the current POTUS:

1.   This country has been being ripped to pieces for decades. One can go back as far as one dares and what will be found over the last few decades are special interest groups out for their own narrow, self-centered purposes, basically getting more of whatever at the expense of others. And, no, I am not a communist. I have a healthy respect for capitalism but not the way a few people have lied, cheated and stolen their way into a financial gain at the expense of others, including the very lives of others. 

2.   Because of The Patient Protection and Affordable Care Act, derogatorily known as Obamacare, I was able to purchase health insurance after being denied four years ago. For the record, I had COBRA coverage which I used for quarterly checkups (a necessity when one takes measured doses of poison --- a/k/a prescription drugs --- to control high blood pressure). Still, as the COBRA was about to expire, the same company that insured me before refused my application. The plans available under the PPACA are –

a.   like other health insurance plans. They either have networks or preferred provider directories, and their networks can be regional or multi-state. Generally, HMOs are network driven, are less expensive, and tend to disallow non-emergency charges outside the network. I have an HMO and have had no trouble seeing my PCP or getting referrals for specialists and even chiropractic care. My health care providers are part of a large health care system that is among the top ranked in the country. 

b.   affordable for those who need help paying the premiums. If this country can subsidize corporations who supposedly cannot afford to fail, pay inflated charges for faulty defense equipment that cause our soldiers to come home maimed, crippled or in a sealed box, finance choice dictators in other countries for the gain of their natural resources, or whatever, what’s a few dollars to get and keep American’s healthy?

c.  optional. For those who i) can afford to pay a full premium; or ii) remain vehemently opposed to the audacious idea of most, if not all Americans having access to health care, or just think affordable health care is beneath them, they can pay the full rate, off-market plans that, by the way, include in their offerings PPOs and the dreaded HMOs. As a matter of full disclosure, they also include open access plans.  (Anyone living in Texas can contact me for those rates as well, and good for you if you can afford them.)

Bottom line:  people will see the glass half empty if they don’t like the person holding the pitcher. They will see through a glass darkly, to steal a Biblical phrase, if their eyes are clouded by negativity. Mr. Obama’s tenure reminds me of a temporary assignment I once had in another lifetime. I was looked over at the outset and the assignment was given to someone else. After the pitifully inept woman made a mess, I was called in to clean it up. When after three days I was still trying to undo the woman’s damage, which she was given four weeks to create, people started grumbling and questioning my competence. Unlike Mr. Obama, I exercised the option of telling them what they could do with their assignment.  Of course, I was younger and had only a small modicum of diplomacy.  I would like to think that 30 years later I would have been more eloquent (though I was not fowl) and poetic when telling them what to do with that assignment.

A suggestion to all:  regardless of the camp in which you dwell --- Democrat, Republican, Tea Party, Libertarian -- or even if your standing on the outside of them all like me, wondering what the heck is wrong with these people -- consider cleaning the filters of your mind's eyes.  When you buy into the most absurd representation, just because it casts the object of your disfavor in a negative light, you are allowing yourself to be used, misused and manipulated by others who are merely taking advantage of your negativity.  In short, you have become one of their puppets. 

Now, don't get your strings entangled -- you may fall and sustain injuries.  Then you'll have to seek medical care.  :)