A Scleroderma Patient Walks Into A Doctor’s Office… And The Doctor Has Scleroderma

Edited 8/31/2012  I felt that my original post was a bit hard on the doctor.  I don’t mention him by name, but above all he is human and a fellow patient.  This experience is not just about me, but about me coping with the world around me.  Sometimes I do so in a way that seems funny to me, but can hurt others.  I  could not sleep tonight without editing  out my judgement of this doctor’s mental state.  I did not know him and although I disagreed with him strongly, I have a great deal of admiration of him because of his accomplishments.  He did what I could not do.  Have a career in medicine while living with scleroderma.  My original post criticized the doctor’s feelings about his own health.  He did not have to share his condition with me, but he did.  

“Obviously, you’re not a golfer.” ~ The Big Lebowski

In 1999, someone well intended city clerk got one number wrong my address.  Three months ago, the City of Murrieta decided it needed to be fixed.  It was a smooth transition, but not without hiccups.  A substitute mail carrier unfamiliar with my address issue, accidentally sent back my depression medication.  So on the day of my appointment this past Friday, I had been two days off my depression medication.   The VA is 41 miles from my house and I figured waiting an extra day wouldn’t hurt because I felt very stable.  That will be the last time I make that mistake.

I woke up feeling good.  I had time before my appointment to have a very productive morning.  I  found a parking spot right way at the VA Hospital and I was on time to my appointment.  I originally thought I had an appointment to see a podiatrist, but I was pleseantly surprised it was an appointment for Physical Medicine and Rehabilitation.

My Rheumatologist at UCLA recommends treatment to my Rheumatologist at the Veteran’s Hospital.  (Who by the way referred me to UCLA when he ran out of ideas in 2005.)  This is something named by the VA as managed care.  This is when a VA  doctor co-ordinates with another specialist outside the VA Health System.  It is helpful to Disabled Veterans who live far from Veteran’s Healthcare facilities and too many reasons to list.  (Click here for more info)

Because of the treatment prescribed by Dr. Furst at UCLA and the VA Healthcare System’s outstanding implementation of his recommendations to the letter, I have a stable condition.  (It took me 16 years to get here, so please don’t give up if it hasn’t been easy. )  Because of my stable condition thanks to treatment of scleroderma and sarcoidosis, my rheumatoligists at the VA Hospital agreed with me that this might be a great time to get me back into some OT to see if we can improve my finger mobility.  After fighting an OT for years about getting them to at least TRY, I had a rheumatologist who was going to order passive range of motion, if only for a short time because he agreed it was worth a try.  Needless to say, I was pretty excited.  This would be easy.  The physical medicine doctor would evaluate me and with my enthusiasm and rheumatologist’s recommendation, he or she would have no problem issuing the Occupational Therapist to at least TRY.  But alas, when the medical assistant led me into the doctor’s office, it felt like my hope had been thrown into the air like a clay pigeon and shot.

The door swung open and I could see the doctor had trouble walking.  I noticed what I thought to be symptoms of scleroderma.   It looked just like my thumb, which I had lost the top of in 1996.  His fingers had mobility, but he still typed with two fingers.  It could have been his style of typing.  I had no way of knowing.  He clearly did not recognize my visual symptoms of scleroderma.  I was afraid to ask him.  My chart said Lupus and not Scleroderma. (There’s a record glitch I need to fix, but thats for another post.)

I was a little encouraged.  I was happy to see he continued medical school despite his obvious medical hurdle.  Unfortunately, the more we spoke, the more I realized we might not be a good doctor/patient match.

It’s not that I don’t believe scleroderma patients would make good doctors.  I think they would make good doctors, but to be a good doctor, one must know the difference between empathy and projecting his or her situation on to another patient.  I perceived he was projecting his condition on to me and I was projecting my own condition right back.   Yes, he was the doctor, but he was prepared for a Lupus patient,not someone  with scleroderma.  For our purposes here, his name is Dr. S.

Dr. S began, “Oh, I see you have scleroderma.”

“Yes, since 1992.”  I replied.

“I had scleroderma.”

“Really? How long?”

“Seven years, but I don’t have it anymore.”

I didn’t even want to now why he thought he did not have scleroderma anymore.  This was my appointment and I could tell by his body language he was no longer thinking of what was best for me.  He started asking me about my surgeries as he sipped from a cup from McDonalds.  I also noted the smell of McDonald’s french fries and the McDonald’s bag next to the keyboard on his desk.  At this point, I thought about my issues with denial when I would eat things from fast food places and then wonder why I felt so swollen later. While I was taking note of what I perceived as his denial and poor eating habits, he was trying to help me with his own experiences with scleroderma.    Looking back, it seemed like a great big projection-fest.

He asked me about my diet.  I told him I maintained a high protein diet, drank protein shakes daily because it helped with my absorption problems.  Then he started to tell me how his scleroderma went away when he became a vegetarian.   I suddenly realized I picked the wrong week to be out of anti-depression medication.

The good news for this doctor was, that I have had enough meltdowns to know there are times not to have them.  He was clearly coping with a progressive, degenerating and soul sucking disease.  My care was important, but I was not in crisis and I have been doing this long enough to know how get to see another doctor to achieve my objective.  So, I sat and listened and refrained from commenting.  I will include some of my thoughts during our exchange, but I’m not going to waste your time with a string of “F” bombs.

Dr. S. began, “I had scleroderma for seven years.  I stopped eating meat and I don’t have it anymore.”

“This finger was bent like yours.” Dr. S. showed me his index finger with the tip missing and wiggled his finger and continued. “As soon as I stopped eating meat, my finger was fine.”  Then he bent his finger showing off his mobility.

“Oh and you should eat vegetables.  They will help you.”

I was about to use my “Hot Dog Down a Hallway” analogy about my digestive capabilities, but he insisted on continuing.

“Passive range of motion won’t work.  Just eat nothing without an eye and your range of motion will return, just like mine.”

I decided that trying to tell him otherwise would be a waste of my time.

“Thank you doc, I’ll try that.  Why don’t you just give me a referral to Occupational Therapy for some adaptive equipment.”  I told him.

I was happy something productive had come out of our appointment without any shouting or cursing.  I walked out of the office and headed straight to the Behavioral Health Department to handle the antidepressant issue.  It turned out, I was the cool cucumber I thought I was.

By the time I got to the Behavioral Health Department, I was doing some sort of weird hiccup noise trying to hold back my emotions.  I told the clerk I just needed to get a refill of my antidepressants.  I told her about the mail situation and as soon as I can get this started in the pharmacy, I will go into the bathroom and finish my emotional outburst.

The clerk behind the appointment desk said, “Stay right there.” and ran after a doctor who was obviously on her way home for the weekend.  They ran down a list of doctors between each other who were supposed to be on call that day.  When they ran out of names between them, the doctor who was about to leave looked at me very kindly and said, “Come with me.”

I thought I was appearing calm, but that involuntary squeaking noise that I kept making would not stop and started becoming more and more frequent.  Apparently, I was having a meltdown and suppressing it so well inside my head, the meltdown had taken on a life of its own and manifested itself outward.  Looking back, I’m a little impressed by my own body’s ability to cry out for help without my permission, but I digress.

The doctor took me into her office.  She sat down at her desk, pulled up my file and ordered an immediate renewal of my medication.  Then she stood up, looked me in the eyes and asked the 5150 questions.

“Are you suicidal?”

“No.” I replied.

“Are you homicidal?”  I paused briefly and considered a joke about the doctor I just saw, but being one wrong phrase away from a 72 hour hold,  I answered, “No.”

“I can’t let you leave like this.”  The doctor asked again,  ” Are you suicidal?”

“No, I just want to get this prescription going so I can go calm down while it’s being filled.  I promise, I’ll be fine.”

She walked me out of her office to the appointment desk to make the appointment.  I paused, then headed straight for the pharmacy and left the office.  By this time, I was just making a noise  I can only describe as a squeaking sound with every breath.  I had to get out of the Behavioral Health office and go back and make the appointment after I had calmed down, but first I needed to get the ball rolling for my meds.

I skipped the elevator and took the stairs to the first floor.  I just kept my eyes forward, moved quickly and made no eye contact with anyone.  I reached the pharmacy, took a number ticket and found a chair next to a wall behind a corner where I sat and waited for my number to be called.

The chair was broken.  The backing had been split open but because the chair was wedged into a corer, the wall worked fine and gave the chair a recliner “feel.”  I leaned my head to the right, resting it on the wall next to me.  It was not a completely private space, but I felt protected as I leaned back against the wall that was the side of a pharmacy pick up window, which was thankfully closed.  I closed my eyes and just listened as each number was called.  Then I felt a gentle touch on my hand.  I looked and it was like looking at an angel.  She had beautiful brown skin and and I could see the concern in her eyes.

“Are you okay?” The angel said.

I looked back at her and said, “Yes, I just need a moment.  It’s been one of those days.”

“Okay honey, if you need anything, I’m just right over there.”  She pointed behind me until I turned to see where she would be.  I could see her VA badge, she must have been staff, but like me, she held a ticket with a number.  She was staff and she was a veteran picking up a new prescription.

“Thank you for taking the time to ask me.  I really do appreciate it.  I’ll be okay.” and she thankfully returned to her seat.

And I really did appreciate it.  I was not looking for attention from anyone.  In fact, had I been there with someone I knew I would have made them wait in the car.  One of the reasons I prefer to be alone is because appointments can go wrong and although friends and family want to help, their feelings of frustration radiate so strongly, I can feel it.   It can make my task of staying focused on what needs to be done that much more difficult.  It doesn’t take long for me to resent their attempts to comfort me.  I feel like they are making it a bigger deal than it is.  They really are they are trying to help, but I don’t want to hear their ideas or see their worry.  That must sound awful to my friends and family, but I have been doing this so long, this stuff isn’t such a big deal to me.  But to those who love me, it doesn’t take much for them to worry.  I might feel the same way in their place.  Now back to last Friday’s adventure:

So, I eventually talked to the pharmacist to get my prescription going.  He told me it would be ready in fifteen minutes.  I walked straight to nearest bathroom, locked myself in a stall and cried for about two minutes.  I was doubled over and pretty sure people could hear me outside.  Then, as though by magic, I felt better.  The weight of the world was off my shoulders.  I stood up straight, took a deep breath and felt calm.  It was as though the anger had left my body.  By retreating to the bathroom, I gave myself permission to let out my feelings without holding back.  Those feelings left and one week later, I still feel as though I left my anger in that bathroom. I just released my anger to the universe.

As for my leaving the Behavioral Health Department, I returned to the appointment desk. I made sure the doctor who asked me the 5150 questions saw that I was okay. She smiled and nodded in approval as she passed me.  I made my appointment, picked up my prescription and headed home. It was time for The Big Lebowski, popcorn couch therapy.  Enjoy this Clip.