April is Sarcoidosis Awareness Month. (My Story -- Part I)

 On Saturday morning, 6 April 1996, I awoke with a “hitch” in my right hip. I thought to myself that I must have bursitis, another malady of my mother, as I tend to have the same issues that she had, except they occur in my life about 15 to 20 years earlier than when they occurred in her life. It was a short time before my 42^nd birthday.

 

By the end of the next week, the right side of my body was totally useless, and I lugged it around with the rest of me like a sack of potatoes. My right arm and hand and foot did not work properly.  My doctor sent me home on that Friday and told me not to go back to work for at least a week. Despite my condition, I did go to worship. I was the only musician for small congregation just off Fondren, north of West Bellfort. To play piano was to subject myself to excruciating pain in my back and arms; I played anyway. 

 

One Sunday afternoon, I watched my feet swell, to the point that I felt they just might pop open. I was taken to a Bellaire hospital’s emergency room near my doctor’s office. The next day, I was transferred to Memorial Southwest.  Lying in the bed, I explored my body, wondering what the heck was going on. I felt a lump on my left knee. That had not been there before. There was nothing on my right knee.  This was troubling.  After some tests, I was sent home but still had no answers.

 

It was clear that I could not return to work. That was a huge disappointment, as I had been preparing for big trial, the only case I worked on for Williams - Bailey, back then a midsize law firm that specialized in mass tort litigation, mostly along the lines of work-related mesothelioma and other issues. My case, the only one to which I was assigned, was the wrongful death of a man who was working on a maintenance crew at a chemical plant and was exposed to anhydrous ammonia. He lingered – suffered -- for three weeks, and died.  My “file” was an eight-foot wall of my office, shelves floor to ceiling, catalogued and cross-referenced.  I did not have the luxury of a relational database, but I knew where to find anything on that wall.  But . . . I digress.  

 

One day, the defiant Andrea reared her head and declared she was going for a walk.  There was a park at the end of the block.  I lugged myself there, but could not make it all the way.  Sitting down on a curb my prayer was “Lord, I don’t know what’s wrong with me.  I can do without my left foot and perhaps an eye, but I need my hands to play.  If you just let me play, I think I can make it through just about anything.”  

 

Over the next few weeks, I had a full body scan, MRI, CT scan, more blood tests, x-rays and whatever else I’m not sure.  There was poking and prodding.   The full body scan produced an image of my skeleton, including two black splotches in the area of my lungs.  Following that, I went back to the hospital for a biopsy. I had thought that there was something about my office building that made me ill. It had been under renovation long before I arrive there in December 1995. I am told the renovation was it into its second year. Floating in the atrium of the building were whisps of white matter all the time.  Upon entering the building, I would hold my breath, race to the elevator and try to get on it before taking another breath. I was not always successful, probably 50-50. I would get terrible headaches at work and jokingly say that I was allergic to the building. That was probably true.

 

Anyway, before I went for the lung biopsy, I requested a sample for myself. I figured if they’re plucking things out of my body, I wanted to have some. Upon completion of the biopsy, I asked for my sample, and in return received a look that screamed “what the heck are you talking about?!”  I was disappointed, as I wanted to send the sample off to a lab and get results independent of any doctor.

 

On May 10, 1996, I was diagnosed with Sarcoidosis.  Not having a clue what that was, it became my job to learn about it.  That was a dismal experience.   The information was scarce.  It was deemed to be an “orphan” disease, more prevalent among Blacks than Whites in North America, more prevalent among Whites in Northern Europe.  It is multi-systemic and multi-symptomatic, can look like other conditions.   Among other things, I was tested for lupus, lyme disease and HIV.  The most commonly affected organs are the lungs, but it can show up in any organ.  Any.  Organ.   My eyes and lungs are affected, but the worst of my symptoms are manifested in my bones, joints and muscles.  And I don’t fare well in extreme temperatures (anything below 65 or above 75 degreesS).  

 

Even through the worst of my illness, I only missed one Sunday of worship, and that was a planned weekend away.  I’ve always been grateful for that, as the one thing I’ve always wanted to do is play piano.  And while I still have Sarcoid-related episodes, I am blessed to have found a way to have a reasonably normal lifestyle.  

 

There is so much more to say, and with there being 24 more days of Sarcoidosis Awareness Month, I’ll continue this later.

 

  

 

 

 

 

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.

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.

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.

Sarca-who? -- Will You Walk for People Like Me?

Take a look at my mugshot.  Go on.  Kind of normal looking, don't you think?  Think again.  I know, some of you are groaning inwardly:  Is she going to write about that?  Again??  Well, yes, I am.

Perhaps a week or so ago -- I forget because my days tend to bleed into each other -- I saw a snippet of President Obama on television, announcing a five-year plan for reducing HIV-AIDS.  I thought to myself, well, that's nice, but what about me -- and people like me?  Then, I had to remind myself that there are lots of people like me who would gladly trade places with me, and properly chastised myself for such a lapse.  But, let me tell you about people like me.  

People like me have Sarcoidosis.  Most times when I mention that in conversation, the reply is "Sarca-who?" and I have to repeat myself:  Sar -- coi -- do -- sis.  I'm not going to try to explain to you what it is, other than it has been described as a run-away immune inflammatory response.  There are a few sources on the web for information, to which I commend you.  Just google the word.

So why am I writing about this again -- today??? 


I just love it when you ask the right question!  I want to tell you about the upcoming Annual Janine Sarcoidosis Outreach Foundation Walk for a Cure in October.  I ask that if you participate in events of this nature, that you consider participating in this one.   It is highly likely that you didn't  know Janine; neither did I.  However, I had the pleasure to meet her mom -- at least on the phone.  At some point, whether during or after Janine lost her battle with Sarcoidosis, her mom, Emma Carroll, started a support  group for people with Sarcoidosis.  Emma is actively and regularly involved with this group and works hard to promote awareness of this orphan disease.  


Speaking of orphans, how many 200-plus-year-old orphans do you know?  Yes, it's that old; it's just not that popular.   And it is more prevalent than one may think.  Perhaps it just hasn't claimed the right person's life.  Morbid?  Sure.  But it is what it is.   

Consider that despite the crise de la saison folks are still getting out, enjoying time off, and going about their daily tasks.  Just last Saturday on local news, this writer learned of an International Jazz Festival taking place at Discovery Green here in Houston.   Saturday was another day of a triple-digit heat index.   And the sun precedes such temperatures.    

The sun.  I love the sun.  And not because I need to work on my tan (although I wish it were just a little more uniform as opposed to a plethora of shades of brown).  The sun is life-giving.  Yes, it can be dangerous when one over indulges, but in proper doses, the sun is a good thing.  But not for people with Sarcoidosis.  Many of us cannot abide prolonged exposure to sun, or triple-digit heat indices.    Most of my time is spent indoors, and I relish the thought of a parking space near the entrance of whatever place I need to visit.  


One of the added bonuses that 

often accompanies Sarcoidosis, including elevated angiotensin-converting enzymes, which causes high blood pressure.  In a roundabout way, that's what prompted this writing.   Years ago I divested myself of all prescription medications except one:  the pilule du jour for high blood pressure.  I have tried many.  The current one is a high-dollar thing, labeled with its description and three warnings:  

May cause dizziness.   One might think why is this problematic -- just take it at bedtime.  Well, that would be great, but I have to take it in the morning.

Do Not Use This Medicine If You Are Pregnant Or Plan to Become Pregnant.  My first thought:  why is the warning capitalized as if it's a title?  Am I to look elsewhere for a detailed explanation?  My second thought:  no problem for me; there'd have to be a Star in the East and one occurrence of that in the history of the world is quite enough.


You Should Avoid Prolonged Or Excessive Exposure To Direct And/Or Artificial Sunlight While Taking This Medicine.  My reaction:  Duh . . . I cannot think of one "sarcoid" patient who gets to enjoy the sun anyway.


What I'm getting to is this:  There is a Sarcoidosis awareness walk in October.   I may not be able to come.  At the rate our summer is progressing it will be a long time before we have manageable temperatures for outdoor activities.  And if I do come, will I be in remission?  We'll just have to wait and see.  But will you come?  Will you walk?  For me and people like me?

Remembering Susan Beard -- and Praying Her Words Will Not Fall on Deaf Ears or Blind Eyes

This morning I arrived at the South Main campus a full hour before the 8:30 a.m. worship began.  It was a planned arrival.  I even went to bed at 8:00 p.m. yesterday to make sure I would have adequate rest, wake up and leave timely for the occasion.  The event was for the attendance of one -- me.  My early arrival afforded me time to park strategically just outside the entrance to the Chaffin building in which my Sunday School classroom is located.  And it afforded me time in a room that was designed for worship and reflection on the awesome and mighty God whom we serve.  In that room is a grand piano -- beautiful to behold and even more wonderful to play.And play I did -- starting and ending with one of my favorites -- "Great is Thy Faithfulness."  As the music filled the room, I let go of the frustration and thoughts of futility at living in a body racked with pain, the waves of which rival any storm's and that rarely takes a break, wishing for oxygen and dreading the need therefor, and wondering if I will ever be free to just be me.  And, in the midst of my pity party, remembering that millions would love to walk in my shoes, sleep in my bed, and worship in [this] room -- and cannot.  So, there came a verse or two of "It is Well With My Soul."

Then there was worship, Sunday School, and lunch with some of my class.  Again, arriving at Chuy's on Westheimer, I parked strategically near the door to avoid time in the sun.  After lunch, I hurried to my Jeep, turned on the A/C and turned the "fan" knob has high as it would go for the drive home.

In a season where many are vacationing and having fun in the sun, I take refuge in my home where the air conditioning makes it possible to function, to just breathe.  Fortunately, I have no desire to work on my already glorious tan, which is a good thing, because having Sarcoidosis with pulmonary involvement dictates a life of solar avoidance -- especially when the heat index is 105.

Just moments ago, I received a note via email from the Sarcoidosis Awareness group, and share it now with any who will read it, as it clearly captures the plight of folks who live with an orphan disease that gets comparatively little attention in terms of research and funding. Susan is gone but her words are those of many who live as she did.

Subject: Oh how I hate this disease

Oh how I hate this disease. It has taken too many things away from me. My ability to work. My ability to care for myself. My ability to be independent. My feeling of self worth. My feeling of who I am. My life. I have had to try and recreate all those things. At some I have been successful but at most I have failed. I try hard, but my enemy is too strong. The battle I am loosing. Sarcoidosis has won. I am still wanting to fight, but I know it will take my life soon.

My goal now is to make a difference in some small way. To help others with the disease to learn as much as they can about this monster. To help researchers to unlock the door to the mysteries that are Sarcoidosis. To feel useful in some small way. To stay alive long enough to attend one last Walk for a Cure.

How do I inspire others to help take arms against this disease? To take part in research to help unlock the mysteries? To get involved and be proactive? How do I make others understand that it is US the patients, the ones with the disease that must take up this cause. Without US the answers will never be found. Because it is within US, within OUR bodies that the key to the door lies. As much as those who do not have the disease want to help, they can not do it without US.

This is my greatest failure. I can not find the words to motivate. I can not reach enough people , to make them understand what a battle this is. What is at stake. I do not have the means to do it myself. For if I could I would without a second thought. I am too weak anymore, my body failing too much. My grief so strong.

If I could just organize the different sarcoidosis groups. Encourage them to work together in a united cause. Find the one thing that we can all work together for on a national goal. Make them understand that a house divided can never stand. We must give up trying for selfish "glory" but find how to work as a team. Where are the words I can use? How do I make others see the need?

Alas, all my dreams and efforts are in vain. For I am but one person. A voice alone. As loud as I can shout about sarcoidosis, my single voice will go unheard. My life will pass, as so many others with the disease have, with little or no notice. All because I could not find the words. Because I could not be heard. No one would help me.

--Susan Beard

Like a Bad Penny: Sarcoidosis Update Part II

Sarcoidosis manifests itself in many different ways. For me, although it was found in my lungs and my left eye, my problems are most often bone, joint and muscle related. For a pianist, even a middle-of-the-road, fair-to-midlin', just-a-hair-to-the-right-of mediocre one like me, it is a really big deal. Let me veer off the road for a moment:

Before being diagnosed in 1996, one Sunday afternoon, in fit of rebellion, I decided to go for a walk in the park. No big deal, right? Not for me. I spent hours walking every week. At least I had until the first week of April '96. Oh -- that "no big deal" question -- yes, a big deal. When one is dragging the right side of one's body and is in indescribable pain, a walk in the park is a bit problematic at the least. The park was only four houses away at the dead end of Lawnhaven -- about 300 feet. I made it to the edge of the park and could go no further; so I sat down on the curb and waited for "M" to figure I've been gone long enough and he should come and look for me. In my anger at not being in control, my confusion in not knowing why, and the very pain itself, I cried. No, I bawled. And, finally regaining control of my blubbering and tears, I prayed: Lord, I don't know what's happening to me, but if you just let me play [piano], I'll be okay.

It's like this: I figured I could get along without my left foot, and an eye, and if necessary, perhaps being too weak to walk. But I needed my hands, and I needed to have use of my right foot, even if it was almost as big as a football. Because I needed to play the piano. For the 18 months or so that I could do practically nothing, I could play piano. I may have had to go to a hospital on Sunday afternoon, but on Sunday morning I sat at "my" grand piano at the church where I served, and played the entire worship service. I may have conducted choir rehearsal with everyone singing a capella but on Sunday morning I played. Sometimes my back and arms were ripped to shreds by surgeons' scalpels -- or so I envisioned, but even then I could play.

So why am I remembering such an awful, but wonderful thing today? I really love these easy questions. I don't have to haw and stammer like a politician; I can simply answer. Let me get back on the road and tell you my answer, which has two parts:

First, I have to play this evening. A few weeks ago before my condition worsened, I was asked to play this evening at 6:30. I've had a pity party today about not feeling well. A friend called me this morning and asked how I was, and I said I'm down to about 30%. In retrospect, that's 29% more than many folks with whom we share this so-called orphan disease. How dare I indulge in a woe-is-me session on a fine Friday afternoon with 45 percent humidity and a 77-degree temperature in HOUSTON TEXAS????!!! That means I can go outside!!! Hellooooooo patio! I'm reminded of that song that ends:

Wait a minute, it stopped raining

Guys are swimming, guys are sailing

Playing baseball, gee that's better

Mother, father, kindly disregard this letter

Alright, I'm going out to the patio right now.

Second, this is an opportunity for me to remind readers -- again -- yes, again -- about the upcoming Sarcoidosis walk-a-thon. And yes, I'm going to post the link again.

Alright, I said this was a two-part answer, but let me leave you with this "part third:"

Like many chronic conditions, Sarcoidosis not only robs one of vitality of the body, but can zap the psyche as well. Sometimes until one utters (or writes) those sentiments of dread, one is totally oblivious of being unable to see the forest for the trees. Such is the case here, in which my temporary amnesia blotted from my mind the fact that the God to whom I prayed 13-1/2 years ago is the same God who had sustained me from my premature birth when few thought I would survive, and all the 42 years prior to that mid-1996 diagnosis, who has been with me through every illness, car accident (especially the one where I knew I was going to die [yeah, okay, what do I know?]), the birth of my Sweet Pea, and everything else, is the same God, the One and Only, the Great I Am, who will be with me this evening when I sit at a piano on a campus in a house of worship, consecrated for use by His people to His glory, to praise Him, and to grow His Kingdom. As my pastor Steve would say: Well? What about you? And for this blog, he might ask: On whom will you relyto get you through your next challenge? This day? The rest of your life?

http://www.jsof.org/events/2009_08_01_archive.html

Like a Bad Penny: Sarcoidosis Update

I am out of remission. That in itself is nothing new. Since being declared "symptom free" of Sarcoidosis in January 1998, I have regularly phased in and out of remission every year. Talk about showing up like a bad penny, it never really goes away. This time, however, is different. The pain is just a hair on the wrong side of unbearable, and my legs have become undependable. I'm trying to decide if I need to buy a walking stick (I went so long without using mine that I gave away both).

This past Sunday I stopped at the H.E.B. on Westheimer @ Fountainview. Prudence prevailed over my being self-conscience, so I used a mart cart, which I drove through the checkout and onto the parking lot next to my Jeep. A woman who appeared to be of sufficient age to be my mother (for the record, I am 55) offered to help me with my one bag in the parking lot of H.E.B. on Westheimer @ Fountain View!!! While it was really sweet of her to offer, that made me wonder am I really moving that poorly? Still, I am more fortunate than many who live with this so-called "orphan" disease.

So, why am I bringing this up again? I could get argumentative and ask would you say that if the subject was some other, more popular disease? Instead, I'll just reply thusly: Simple. There are some events coming up to highlight Sarcoidosis and raise funds to support related research, and I want to share them with you. So here they are ---

Janine Sarcoidosis Outreach Foundation will be a guest on KPFT 90.1 FM Radio's October 18, 2009, Panafrican Journal program at 8:05 p.m. KPFT is a media sponsor of the Janine Sarcoidosis Outreach Foundation.

On Wednesday, October 21, 2009, the honorary guest for the Janine Sarcoidosis Outreach Foundation's 5th Annual Walk for a Cure, Dr. Marc A Judson of the University South Carolina Medical Center's Sarcoidosis Clinic, will be a guest on KPFT 90.1's Connect the Dots Program, from 3:30 to 3:45 pm. (Note to the fabulous Texas Medical Center: how about a Sarcoidosis clinic for Houston?)

On October 14, 2009, the Houston Texas Sarcoidosis Support Group will be audience members for the live taping of of KHOU 11 TV's Great Day Houston program with Debra Duncan.

October 24, 2009, the 5th Annual Sarcoidosis Walk for a Cause and Cure will take place in Houston Texas. There will be a special appearance by the awesome jazz saxophonist, Rachella Parks, who has had three hip replacements due to Sarcoidosis complications. You can get more information about the walk by clicking here: http://www.jsof.org/events.html

I invite you to tune in to learn more about Sarcoidosis, and for those of you who can, participate in the "walk" -- something that I had hoped to do this year. If the walk took place today I could not. But -- there's always tomorrow.

Tomorrow might be better.

Sarcoidosis: Part I -- Her Story

She was almost 42 (folks generally thought she was perhaps in her late 20s), working on the biggest project of her career. And she had her music. And her favorite downtime activity was walking -- about 30 miles a week. Life was okay. And then . . .

Around the first week of April in 1996, she began experiencing discomfort in her right hip. She thought it was another malady, courtesy of some genetic strain. (She tends to experience stuff that other family members have experienced, but much earlier in her life than they experienced the same malady in theirs.) She saw her doctor, who gave her a prescription and sent her home. By the following week, the right side of her body, from the neck down, did not function properly. She was literally dragging her right side!

Second trip to see her doctor: more questions, a few tests. No, she did not have lupus, lymphoma, lyme disease, or HIV. More prescriptions and an order to take a week off from work. When she returned the following week, she was terminated.

One day while dragging around the house, in a quandry, wondering what was going on with the old 'bod, she announced with a degree of preemptive defiance, that she was going for a walk . Yeah. Right. She lived four houses down from a nice little park and walked there frequently. She made it to the edge of the park and could go no farther. She sat on the curb, not knowing if she could make the walk home. After her pity party she managed to utter a short prayer: Lord, I don't know what's happening to me, but whatever happens, just let me play. She sat on the curb until someone came to fetch and take her home.

By the following Sunday, her size 9-1/2 AAA feet were the size of footballs. And when she tried to stand, she felt as if she was standing on billiard balls. Somehow, she dressed and made it to the 11:00 a.m. worship service for the church where she served. As she played the piano, daggers ripped through her clothing, pierced her skin, and sliced her muscles into slivers of flesh – or so she thought. After that she went to a Bellaire hospital. She could no longer ignore her feet. The tingling was more like a swarm of wasps or bees. The skin was so tight she thought it would pop. (Unlike the gradual swelling of the belly during pregnancy, the change was overnight.) She stayed overnight at the hospital (the food was pretty good) and was then transported to a hospital near Houston Baptist University (where the food was pretty bad -- leave it to an insurance company to mess up a good thing).

As she lay in bed the next morning her thoughts were consumed by theories and outlandish ideas of what could be happening to her. It was at that time that she felt something on her left knee -- a lump about the size of a jumbo bubble gum ball (you know -- the ones that come red, green, purple, orange, blue and speckled in a package [her favorite]). Thinking there should be another on her right knee (you know, balance, symmetry, whatever), she searched but found none. She was discharged without any answers.

Then more tests "outpatient" style: a bone scan (Have you ever seen your own skeleton? Pretty weired.) revealed big spots on her lungs. Then there were MRIs, CT scans, and a lung biopsy. Then there was a diagnosis: Sarcoidosis. Sarco-what??? We'll come back to that in Part II.

Despite the prescription medications, which were supposed to treat her symptoms, her condition worsened. Anti-inflammatories did nothing to ease the swelling and discomfort in her ankles. Pain pills did nothing to ease her pain. For several weeks her feet remained swollen beyond the capacity of any shoe. Having functioned well on 4-5 hours of sleep, this former human dynamo could not raise her hand above her head without assistance. Groping for a silver lining, she said at least I can catch up on my reading. Wrong.

She began experiencing new symptoms -- the twitching of her toes and eyelids. The eye movement was so disturbing that she could not read. Off to see an ophthamologist. You have blepharospasm. BLEPHARO-WHO??? You need to get more rest. BUT I DON'T DO ANYTHING BUT READ AND WATCH TV. Then read less and watch less TV. Okay, that's it. She's been sentenced to PRISON -- FOR HOW LONG??? Who knows?

During one of her doctor visits, the guy decided to prescribed steroids. She found it amazing that a tiny white pill could make her feel as if she would either eat a side of beef at one sitting, or was about to breathe her last breath -- all at the same time. Being her own person, she ditched the Prednisone.

While in prison, for the next year or so, the one constant in her physical life, was pain. Dull, sharp, shooting, constant, intermittent, all varieties. Other than for trips to see her doctors (the purpose of which she questioned, as nothing ever changed), she was released every Wednesday evening for choir rehearsal and every Sunday morning for worship, which she never missed (if you ever really get into doing music, you will understand playing in pain), except for one weekend -- an intentional trip to Wimberly and Southwind (her favorite bed & breakfast). The one constant in her spiritual life was God -- the glue that held her together (and does now).

About 18 months after the onset of the disease, she began to improve. She discovered the scariness of driving alone and suddenly, while on Loop 610, wondering what was her intended destination. Short-term memory was a really serious problem and accounted for opened or unlocked doors, overrunning bathtubs, clothes left to "dry" in the washer, who was just on the telephone, etc. She slowly regained some strength and a bit of energy. The pain dissipated but never stopped. Her body never lost the feeling that she had just been run over by an 18-wheeler.

Someone else finished the biggest project of her career. She tolerates people who look at her sideways when she parks in a spot designated for vehicles with "Accessible" (the new politically correct word for "handicapped") parking credentials. She rarely wears shoes with "high heels," and, being vertically challenged, that is a disappointment. (Finally, her feet shrank to a 10 AA.) There are frequent inspections for new lumps. Always there is foraging for natural remedies, anything to energize. And in choir, she sometimes cheats -- sneaking breaths in the wrong places.

The old "normal" never returned. Even after 13-1/2 years, her body is sometimes foreign to her. Still, as she takes her one daily pill, she realizes that many who live with Sarcoidosis would gladly trade places with her.

-- to be continued