I often forget that I live in hostile territory. The world has changed since I was a child growing up in Baltimore; changed drastically. I was a child of the 60s when peace and love was part of American culture and there was still a sense of community. The corner drug store back in those days would put a pack of gum on my father’s “account”. This was not a credit card as people use today, but more of a verbal tab they trusted would be paid. They knew who my father was and most of the other parents in the neighborhood as well and knew they were good for it, so the occasional pack of gum or candy us kids wanted could be paid for later and there was never a problem. The suburb of Mount Washington was in some ways like a small town; a close-knit community made up of University professors, and various medical/scientific people.

Most of us kids saw the same dentist and the same pediatrician and it wasn’t uncommon that the families of patients and doctors socialized outside of work. In today’s world this would be considered unethical and a conflict-of-interest, and in that time it was a double-edged sword. On one hand doctors were more apt to take a deeper interest in your care because they knew you on a more personal level, but on the other hand, if there were problems in the family your doctor was as much beholden to other family members as he was to you, so there was nobody to confide in. If there were problems with the services you received at the doctor’s office there was little recourse, but thankfully those were few and far between (mostly because back then doctors considered it just a part of their job to be on-call at  night, on weekends, and on holidays, and paperwork for referrals and other medically related services was not viewed as doing something extra, nor did they expect to be paid extra for completing it. Back in those days doctors generally expected to have to work hard and be available for whatever the patient needed.

If a child got sick at 3 in the morning you could call the doctor at home and he’d get out of bed and meet you at the office. If you had to go to the ER he’d meet you there too to be sure that there was continuity of care and he generally saw as an in-patient when you had to be admitted to the hospital. He or she considered it their duty to make sure you got the care you needed for your unique circumstances and medical history, If specialists had to be called in you could rest assured that he knew these doctors pretty well and personally could vouch for them. There was a sense of security in knowing that your doctor cared about you as an individual and had a stake in how you were treated.

My pediatrician (Dr. K) was a kind person and there was no question that he entered the field of medicine for the right reasons. My Ear Nose and Throat doctor (Dr. L) was a different story though. He was probably my first bad experience with doctors and had a surly impatient demeanor. Most of his patients were adults so I don’t think he really knew how to relate to children. I had recurrent antibiotic-resistant ear infections as a toddler and I remember my mother bringong me to his office fairly frequently. On the table beside the exam chair was a large glass flask full of some sort of transparent blue liquid. It had a hose connected to a spigot attached to a bulb like a large perfume bottle. Soon after I sat in the chair he picked it up and proceeded  to put it to my nostril. Being afraid I would choke and not knowing what this stuff was he was planning to put up my nose I pulled my head away reflexively. He explained nothing and merely threatened. ” Sit still” he snapped, “or I’ll wrap you up and give it to you!” I didn’t know what that meant exactly, but knew it meant force of some kind. My mother looked on without coming to my defense. it seemed I was trapped. There was no escape with the doctor sitting directly in front of me, and all this equipment between me and the door which was to my left and behind me. He squirted the stuff up my nose and looked into it with this instrument with a light on it. I don’t remember what happened next, but it was pretty much the same each time I went in there. I left with a prescription for one antibiotic or another, none of which had much effect, and then one day I awoke out of a sound sleep with my ears churning, pain, and finally drainage coming out of both ears and onto my pillow. Things had reached a critical point and my eardrums had burst. The next thing I remember is walking into the hospital with my mother, scheduled for surgery. I was terrified, feeling as though I was going to my doom, not knowing what was going to happen to me. I assumed it would be a different doctor doing the surgery.

As my mother and I sat in the waitingroom a nurse called me to come with her. I turned and looked at my mother and she said “No you’re mother can’t come with you back here. Follow me.” The building was old and the lighting dim. The hallways seemed especially vast as I walked down the long corridor. We turned and entered through a door and into a room with lots of cubicles with curtains and the nurse told me to remove everything and put on a gown she handed me. I had an ever-growing lump in my throat but tried not to cry, surrounded by strangers I didn’t know were safe or not. After putting on the gown the nurse led me into a large room which had many crib type beds lined up in rows with metal bars. I was the only young child there and most of the others were adults. There were only one or two older children of around the ages of 9-14. I looked around desperately hoping there was someone kind to talk to that could distract me from the cold barren room with its drab walls and people staring back at me with vacant somewhat sad eyes. The others waiting for surgery were little comfort and the nurses and orderlies barely spoke unless they had to do something that required a patient follow their instructions. 

After what seemed like an eternity, a nurse appeared. In her hand was a syringe, the needle on it glinting menacingly in the low light. I swallowed hard, realizing that was meant for me as she came in my direction. I don’t remember her face at all; just her hand and that sharp needle she carried. I looked desperately for a way to escape, but the bed was high off the floor and the top of the bars reached eye-level. As she neared I saw a large muscular black male orderly nearby. I told her I wanted to go home and wanted to see my mother, as I inched backward towards the corner of the bars.

“Not yet” she replied with no emotion. “Turn over on your stomach”, the nurse directed. It was then that I panicked. 

“No, no! I don’t want that! I want my mother! Let me out of here!” I didn’t know if I’d make it over that bed railing but I tried to make a dash for it. As I grabbed hold of the bars with both hands and tried to climb out I felt someone grab both my ankles. I was suspended in mid air with legs forced apart. I looked back to see that male orderly holding me like a chicken prepared for skinning. Then the nurse jabbed me in the butt before I had time to get any further. It felt as though I’d been stabbed with a knife. Neither of them said anything to me and were gone almost as quickly as they’d appeared. The stinging pain in my hind end lingered and the muscles around the injection site ached. Tears fell onto the sheet. I wondered if my mother had given me up to these stone-faced people who were doing nothing but hurting me. Fear turned to sadness. I did not know what was going to happen next but figured it couldn’t be anything good. No one came to comfort me.

Next, the bed with me in it was moved down the hall. I was still awake but starting to feel sleepy. They took me into the OR, picked me up, and put me on a table. As I sat at the edge things began to look and feel strange. As if that weren’t terrifying enough, in walked Dr. L. Even in my altered drugged state I felt I was doomed. The anesthesiologist picked up something that resembled a baseball mit attached to a movable spring joint arm, put it towards my face and said “Blow up my balloon.” I was not that stupid. I had no idea what that thing was but knew it was no balloon and now having seen enough didn’t trust any of them. Realizing that Dr. L was involved in this, I wanted no part of it. I fought with every ounce of energy I had left. I was sure they were about to kill me. I wondered if they were mad at me for being sick with the ear infection and because I didn’t get better. Whatever was in the shot they’d given me was making me start to hallucinate and each time they put that thing over my face it got wierder. I couldn’t breathe and felt like I was drowning. The smell of burning rubber filled my nose and mouth. It is something you never forget. The last thing I remember before going fully unconscious was the vision that this thing was moving by itself (looking back I believe it was probably nitrous oxide gas they used as anesthetic).

I woke up in the same vast room I’d been in while waiting for surgery. I was back in the bed with metal bars. A nurse came and led me back down the hall to change back into my clothes, then to the waitingroom. My mother seemed oblivious when I was returned to her as if she were merely picking me up from school. 

Walking out into the sunshine afterwards to the car to go home, it seemed like it had all been just a bad dream. It took the rest of the day before the horrible taste and smell of the gas dissipated, so I knew it was in fact real.

In the weeks that followed, the nightmares started. There were nights I was afraid to sleep because somebody or something in those bad dreams was attacking me. It was various different scenarios, but the same theme. There was one horrific dream of the “Running of the Bulls” in which I was being gored to death and couldn’t run away fast enough, and numerous nightmares about walking in graveyards at night after dark and a smell would always come up which was a combination between new library books and rotting flesh which was what I described as “the smell of death.” I woke up in terror and was scared to breathe through my nose.

Then there was the nightmare I called “The Banging Duck.” In that one I was in a kitchen in our second house but nobody in it was familiar. They were Nazis, all of them men sitting around a round oak table in argyle knee socks. I felt as though I had to come into the room and speak to them very carefully. I told them I was hungry and asked if I could have something to eat. One of the men replied callously, “All you can have is this!” Above me appeared a 20 or 30 foot tall duck; not the cute, harmless, and innocent type of animal one usually thinks of when they think of a duck, but angry and menacing. It jack-hammered its beak on the floor inches away from my feet. The sound was like dumpsters being dropped hard on the pavement from a height but in rapid fire succession.

In recent years, as the healthcare system and insurance companies have become increasingly restrictive, focusing more on saving money than on delivering individualized patient care the sickest patients often find out that the care they really need and can benefit from is not being provided, but instead, what the agency or healthcare facility can get the most reimbursement for.

I wish I could say that since my last entry things had gotten on track for my out of town specialist referrals and that I was now getting the kind of care that would best help me, but that is not the case. My pain level has increased and most of my other symptoms have gotten worse.

My Rheumatologist put me on Methotrexate after refusing even to provide explanation of all the other treatment options because he was convinced that Medicare wouldn’t cover newer, safer medications, although he was aware that I have serious and life-threatening risk factors. As I feared, my liver enzymes shot up in only a month’s time to more than double the upper limit on only 10 mgs. of Methotrexate. My face was starting to look gray and he could tell something was wrong. Needless to say, when the bloodwork came back he took me off it immediately. I don’t know what I’m going to do now.

My primary care practice referred me to Palliative Care, an agency whose tagline talks about bringing “comfort and peace” but since my case has been open there what I’ve experienced is anything but!

Most of the documentaries I’ve seen on Palliative Care show a scenario vastly different from this in which people have the option of a variety of alternative/complimentary therapies in addition to traditional treatment. This agency offers none of that and although I was supposed to get Palliative Care (and blood pressure monitoring to gather some recent data to provide to those out of state specialists that may be able to help me obtain treatment for my Dysautonomia), this week I’ve been hit with a barrage of in-house evaluations by their OT and PT departments whom even after my saying to them numerous times that I am exercise intolerant they set me up with exercises through both departments; one for upper body and one for lower body.

These PT and OT people nagged and nagged until I tried these exercises and as I said, it was a big mistake. After just doing exercises with my knees and ankles and from the elbow down to wrists, my body is systemically inflamed to the point that my pain medication is now less effective in controlling my pain. I am now having trouble sleeping due to constant aching and inflammation, and the other night several hours after exercising my legs, I got down on the floor to take some photographs of my animals and when I went to get up I got severe Charlie Horses in the back of both thighs, and in my stomach muscle all at the same time. This pain was off the charts! It was so unbearable it knocked the wind out of me and it triggered my Dysautonomia. I broke out into a cold sweat, things started going black, and I almost passed out!

It’s blatantly obvious that they are doing a sales pitch for PT and OT for excerse because that’s the easiest thing to get Medicare to reimburse for. One thing that actually does help my stiffness, pain, and range of motion is massage, but they’d have to code it differently. Under Physical Therapy they have to code it as “manual therapy” and Medicare does cover it in 5 week series’ which is renewable for a second 5 week period but then has a gap period before in can be done again. But rather than to contract it out and do it that way, they are basically refusing me that while instead forcing something down my throat that is making me worse; not better.

Exercise is by no stretch of the imagination “Palliative Care.” Elizabeth Kubler Ross (the originator of Palliative Care) would turn over in her grave if she saw what this agency is doing in the name of the thinking-outside-the-box modality she coined!

My body is tired. I never predicted at age 5 that my nightmare The Banging Duck would be so prophetic, but in fact what often happens is that when a seriously ill patient knowing their own body says to an agency which specific approaches are helpful to them, what the agency (and the insurance company) replies back is “All you can have is this.”