Tuesday, April 14, 2015

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.


Sunday, April 5, 2015

DAY 5 OF SARCOIDOSIS AWARENESS MONTH


And it’s Resurrection Day!  Alright, many refer to it as Easter.  I’m a Resurrection Day kind of woman.  And what a glorious day it has been, spending the morning on the campus of my church for worship, Sunday School and fellowship. It is a day on which I was reminded in song, scripture, sermon and quiet, that my faith is what keeps me going.

Life is not what I thought it would be as a tread closer to 61.  After all, 35 years ago I projected 2015 would be my retirement year.  When you lose almost two decades of productivity that's more than a stretch.  Ha!   Still, life is good, because God is good.  And even in my infirmities He sustains me and gives me peace.

The Glenn Edward Burleigh adapted a hymn of which I am reminded.   This is what he added:

He gently speaks to me; in my quiet time alone with Him I find the love I need.  
He gently speaks to me; in my quiet time alone with Him I find the joy I need.  
He gently speaks to me; in my quiet time alone with Him I find the peace I need.  

The refrain of that hymn says:

Blessed quietness holy quietness
What assurance in my soul
On the stormy sea He speaks peace to me
And the billows cease to roll

Glenn then continued:

When he speaks to me, I get peace that passeth understanding
When he speaks peace to me, the power of God takes control 
When he speaks peace to me, I get joy, unspeakable joy in my soul
And the billows cease to roll.

Yep, there are storms.  Some of us call them by the names of unloving spouses, unruly children, insufferable supervisors, or bills that sit at table every meal and refuse to ever leave.  And some call them tumor, lymphoma, cancer, MS, ALS or Sarcoidosis.  Whatever the storm, He is the shelter.  Whatever the problem, He is the solution.  Whatever the question, He is in the answer.  That is not to say the storm will disappear; it is to say that He will see you through it.  After all, life here, no matter how meaningful, or successful, or how much we enjoy it, is only a way station until we go home.  And as long as we're here, if we are Resurrection Day kind of folks, we aren't home . . . yet.

Thursday, April 2, 2015

DAY 2 OF SARCOIDOSIS AWARENESS MONTH:

It is also Maunday Thursday, and when I looked outside and saw it is overcast and the sun is up there, but hidden, I thought it about par for what folks who share my faith will commemorate today. It is a day of shadows and darkness.

For many Sarcoid sufferers, most days are filled with shadows and darkness. Because the disease is so misunderstood and in most cases unknown, it is not uncommon for Sarcoid patients to feel isolated and suffer tremendous bouts of depression. Because the disease often goes misdiagnosed, people are often told things like "You're just lazy. You'd feel better if you got up and exercised." A woman's doctor said that to her. She went improperly diagnosed for more than ten years. The problem is, most have difficult just getting up!

In my "pre-Sarcoid" years I weighed about 140 pounds and walked several times a week, generally about 15 miles. There was a weight bench in my bedroom, and I could bench press 175 pounds. Indeed, that's all history. I have learned not to dwell on what "I used to do" and be grateful for what I can do. Sometimes, however, those pesky imps rear their ugly heads and try to plant all kinds of ugly stuff in my mind. Get thee behind me!!!!!

As you can see from the picture, I am wearing all black, the uniform of the day for our sanctuary choir members serving in this evening's "Service of Shadows." [I confess the last time I wore this suit it was not so snugfrown emoticon I really have to toe the line because I don't get much exercise, and I have all but left the line.] I'm not much on smiling, but considering the overcast sky and the Christian theme of the day, I tried to do a little contrast. And there are lots of things for which to smile and be thankful, including that I got up this morning.