>For those of you who are nurses, I'm submitting this to The West
>Virginia Nurse. It's a bit long, folks, so feel free to delete :)
>
>From nurse to patient: The Uninvited Guest
>
>One never plans to be a patient. One takes care of patients.
>Throughout a long and varied nursing career, I'd never planed to be on
>the other end of the stethoscope. But here I am, and the irony is not
>lost on me. I now pour more pills for myself to take in a day than I
>used to for 6 patients in the CCU. I'm on a first name basis with the
>pharmacist; and I have the longest medication list of any of my primary
>care physician's patients. I use the skill and experience that used to
>enable me to find veins in the critically ill to enable the home health
>care nurses to find veins in me. When I'm admitted to the hospital for
>one of my periodic visits, I bring my medications from home and a
>medication list. Yes, I'm one of those patients, the one who comes
>complete with charts and graphs because we're trying to figure out how
>to live with this illness that has entered our lives, this uninvited
>Guest that has come to stay.
>
>I have a disorder called transverse myelitis (TM). You might think of
>it as " single sclerosis," for it is a demyelinating disorder similar to
>multiple sclerosis, only occurring in a single lesion somewhere along
>the spinal cord. It is a rare disorder, occurring in a little over one
>per million of the population. I suppose if one has to be ill, one
>might as well have a rare disorder. It crept upon me slowly, starting
>with some numbness of the fingertips, progressing over a period of days
>to weeks up the arm, gradually becoming bilateral. As a busy nurse
>practitioner, wife, and mother, I didn't pay too much attention to it.
>When it persisted, I consulted with a friend neurologist, and as it was
>unilateral at the time we thought it might be a brachial plexus injury.
>When it became bilateral, and more severe, I was ultimately diagnosed
>with TM.(The story of reaching that diagnosis, and the need to become an
>educated consumer, I may tell another time.) One spinal tap, two
>MRIs,three grams of SoluMedrol later, and I was home to begin to
>negotiate what my relationship would be with this new entity in my life.
>
>You may have heard the expression "a person living with AIDS". I now
>became a person living with transverse myelitis, and it almost seemed to
>be a person itself. There were several facets to it. One was the pain
>and sensory changes. These varied on a day-to-day and sometimes hour to
>hour basis. The freezing, numb, deep sunburny discomfort came and went,
>worse with increased activity, fatigue, stress, and weather changes. I
>woke in the morning, almost pain free, just a little drumming in the
>hands, and would wonder what the day would be like. Would this new
>entity be kind and quiet today, so that I might accomplish a day's work?
>Or would it be hateful and mean, driving me to take medications and lie
>still, waiting for it to settle?
>
>Another aspect was the fatigue. Stress, heat, lack of sleep, all would
>bring on this bone-wrenching tiredness. I had no choice but to become
>horizontal, and be grateful that my children were no longer toddlers but
>now able to amuse themselves. A morning of driving my children to
>swimming lessons, picking up the groceries and fixing lunch now
>exhausted me. I applied to myself those things I had used with my
>patients. I had taught my cardiac rehab patients pacing of activities.
>Now I used those principles myself. I had only so many "coins of
>energy" to spend, and I would spend them wisely. Still, some days I
>might feel almost normal. What would the uninvited guest bring today?
>
>In many ways, it was like the relationship one has with a new lover.
>One is very focused on the moods and changes of the other one. One
>learns how to bring out the best in the mutual relationship. One learns
>as much as one can about the other. I had no old yearbooks, but medical
>texts and the Internet provided information. One might chat up the
>other's friends to get a more rounded view; I found an Internet chat
>group of fellow TMers. I found myself wanting to tell my friends about
>this new entity in my life, thinking it might be as important to them
>as it was to me.
>
>Through this, I was always the nurse. Isn’t it interesting, I’d think,
>how the nervous system reacts. Anti-convulsants and anti-depressants for
>the pain—how fascinating that they work this way. Medication schedules
>adjusting to give me the “best” times during family hours. Balancing
>fluid intake to maintain blood pressure and avoid incontinence during
>social events. Consulting with the neurologist to determine how to treat
>this guest that not only was staying, but that refused to settle into a
>routine.
>
>The guest invited a guest—sympathotonic orthostatic hypotension. An even
>rarer disorder, also in the autoimmune family. (I had a passing thought
>about what other members from that family might come, but didn’t stay
>there). Now I had no choice, I had to go to the hospital.
>
>Nurses there were busy, short staffed with critically ill patients on
>the floor. I wasn’t ill-as long as I was flat, I was cheerful, looked
>normal. It was only when I stood up, and my blood pressure became
>unobtainable, that I looked as it I belonged. So I stayed in bed, and
>mostly saw aides except at pill times. Still, some of the nurses, even
>though busy, took a moment to chat, came in my room to chart. I felt
>less alone, distracted for a time from the ever-present guest.
>
>In the work-up, it was discovered that I had an unstable C-spine,
>requiring immediate surgery. Bear in mind, my hands don’t work well; and
>surgery aggravates the condition. I awoke in considerable pain, and a
>nurse bustled up. “Now dear, you have this PCA pump. Just press this
>button and it’ll give you some pain medicine.” “I’m sorry,” I croaked,
>hoarse from the intubation and extubation. “My hands don’t work, I had
>this surgery, I can’t press the button.” “Oh,”she said, “well, we’ll
>just put it in the other hand.” “No, I’m sorry,” I rasped, barely able
>to manage a whisper. “The other hand doesn’t work either.” “Oh,” she
>said temporarily defeated. Then she brightened. “Well,” she beamed,
>gesturing to the nurses’ station, surrounded by a cachophony of
>critical care noises. “You just yell out, and one of us will come push
>the button!”
>
>I was soon on the floor, and had IVs out; but the pain and that guest
>acting up prevented me from getting enough PO fluids. I was dry, and I
>knew it. I told the surgeon I needed an IV, and he agreed. He left to
>write for it, then popped his head around the corner. “What do they
>usually give you, and how fast?”
>
>That night the IV was feeling funny, and I asked the nurse to check
>it. “I don’t know what you’re worried about; you don’t need the IV
>anyway. “ It was too much. The uninvited guest had been niggling and
>naggling all this time; and I’d rarely given in..but this was too much.
>I started to cry.
>
>Another nurse came in to look at the IV. She flipped on the light, took
>in the tears leaking from my ears and sniffed, “I don’t know what you’re
>so upset about. You have nothing to cry about!” Nothing to cry about!
>The Guest laughed. I cried.
>
>I escaped the mercies of that pair, and eventually went home. I was
>encased in that medieval torture instrument, the cervical collar. The
>home care nurses were nice, professional, generally young. We worked
>together well. The one who stands out, though, was a little older. She
>plumped my pillow, got a cloth for my brow, opened the collar to cool my
>neck, gently touched my shoulder with one hand while taking my pulse
>with the other. It didn’t take any longer. She did all the high tech
>things the others did, with a practiced hand. She also remembered high
>touch, the non-spoken but essential part of nursing.
>
>As a nurse, I was confident of my ability to provide concern and
>empathy for individuals with chronic illnesses. Now, as a patient, I
>realize how much more there is to understand.
>