Leave No Nurse Behind - Book Excerpt

Tips for Nurses Working With a Disability

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A Late Bloomer: Nursing with Rheumatoid Arthritis and Bipolar Disorder by Cary Jo Cook, RN, CMSRN

My path to nursing was long and circuitous. I graduated from nursing school as a registered nurse when I was 36 years old. Since becoming a nurse, I have worked in skilled care, behavioral health, med-surg, neuroscience and ICU step-down. I currently work in an orthopedic spine surgeon’s clinic as a nurse clinician.

I experienced my first joint problems in junior high school: bursitis in a heel and bilateral knee chondromalacia with patellofemoral syndrome, both of which continued into high school and limited my participation in gym class. As a young adult, the knee pain continued. I had swelling and generalized joint pain and intermittent redness.

Finally it got bad enough that I had to start seeing doctors. At times, I was symptom free. But at times I could be a 25-year-old healthy, fit woman who could barely walk up a step due to severe knee pain. I saw a few internists and orthopedists over a period of around 10 years. None could give me a diagnosis or help with the pain. A year or so after I became an RN, I had a severe episode; the swelling was so bad that I could not open medication bottles or insert an IV. I was certain I had rheumatoid arthritis (RA). I referred myself to our hospital’s most popular rheumatologist.

This rheumatologist diagnosed me with RA as well, and soon I started a regimen of multiple medications. They helped a little, but not enough. But within a short period of time, I began taking Remicade infusions.

This was the beginning of the end of my hospital career. I improved dramatically on the Remicade and did pretty well for about a year.

I struggled with fatigue constantly, so I eventually had to cut down to one full-time job — up until that point I had been working beyond full-time while raising a teen-aged boy as a single parent.

I transferred to a newly opened neuroscience unit at a sister hospital and had critical care classes and training along with extensive neuroscience training. This last year in hospital nursing, I moved up from staff nurse to clinician. I worked as a day charge and worked on the step-down unit. I loved neuroscience nursing, and I didn’t want to leave it.

However, a combination of upper management difficulties at the hospital and my ever-worsening RA made it clear that I could not continue spending 12 hours or more on my feet every shift, lifting patients who were often twice my size. The fatigue and the hand, wrist and foot pain and swelling was just too much. I never wanted to be known as one of those nurses who just sits in the station and doesn’t take care of her patients, let alone help others with theirs. I decided to leave the hospital and find a job that was less physically challenging.

I took what seemed like a great job in a 13-surgeon orthopedic practice. I became the spine surgeon’s nurse, which seemed to dovetail nicely with my neuroscience knowledge, experience and enthusiasm.

There are also general orthopedic patients with fractures and strains. This has required that I learn how to cast. The problem here is the cast saw. I did not anticipate the cast saw. It’s a heavy, awkward, vibrating device used to remove casts. It causes me great pain in the hands and wrists. I am very lucky that the doctor and PA with whom I work are very kind about doing cast removal for me when I ask. Neither of them acts like they are annoyed or resentful. I am grateful, because like most nurses, I don’t like to ask for help. RA causes chronic tendonitis as well as the obvious joint deformities, so often I just don’t have the strength or control to work this machine.

I think the patients would be alarmed if I appeared to have a difficult time handling the saw on their extremities.

I have never asked for or received any formal accommodations. What I have received is help on a personal level. On the medical-surgical unit, my coworkers would help me spike a bag on a bad day or open a tough blister pack of meds. When my hands and wrists were weak, my coworkers did the majority of my lifting for me. I also asked my floor director not to assign me any patients with tuberculosis, since exposure to TB is contraindicated while on certain RA meds like Remicade.

This wasn’t a problem, as we didn’t get many patients with TB anyway. Of course, when anyone else needed help, I was always the first to volunteer, whether it was a difficult patient, passing meds or taking over so someone could have a crying jag in the restroom. That is what team members do for each other, and I was very lucky to work with the kind of people who helped each other out. Patient safety should always come first. There is no excuse for irresponsibility when other lives are at stake.

I did not tell them I had RA when I started working at the clinic. I honestly didn’t think it would affect my work. I am able to use the cast saw at times — it just depends on whether I’m in the middle of a flare or not. We lug around a heavy laptop computer as well. When my hands are in pain, the PA and surgeon carry it for me. They are terrific and never complain. I’m sure they have no idea how much those little helping hand moments mean to me.

No one wants to feel disabled.

Nurses with disabilities understand better than anyone what it is like to be ill or injured — and what mountains of worry a patient is often buried beneath. These are the nurses who relate better to the patients on a personal level because of their shared experiences. These are the nurses who better understand the big picture — the ramifications illness or injury may have on a patient’s entire life.

It cannot be emphasized enough what a comfort these nurses are to their patients.

Workable Wisdom

  • Remember you are forging a path for others. People with disabilities have not been welcomed with open arms into nursing. We must work extra hard and be extra competent, just like any other minority does when trying to pave the trail for others to follow.
  • Don’t ever use your problems as an excuse for not doing your job properly. Consider this example: "I was tired, so I didn’t pass the meds." Find a way to get the job done, even if it’s asking for help. If you have a disability, you have a label. Don’t let that label be associated with a difficult working situation for others, or they will not welcome those who follow.
  • Do not ask for accommodations unless you really need them. This will earn you and others like you respect from coworkers, instead of groaning when your name is on the schedule.
  • Take care of yourself. Do not refuse to eat if you are diabetic and then have a low blood sugar every day on the unit, requiring an extra break to eat.
  • Be professional. Do not take care of patients even for one hour if you are mentally incapable of doing so competently. Patient safety must always come first. If you are not all there mentally for any reason, do not report for work.
  • Remind your hospital administrators that you’re a knowledgeable worker. A nurse with 25 years of ICU experience and excellent critical thinking should not be tossed aside as soon as she has a bad back. This just doesn’t make sense, from a fiscal, financial or staff education and support view. These experienced nurses with disabilities are leaders, mentors and the backbone of any unit.

Cary Jo Cook, RN, CMSRN, grew up in Clinton, Iowa, and attended Elgin Community College in Illinois. She works as an ortho/spine nurse clinician for a large, private orthopedic practice in Geneva, Illinois. In addition, Cary is attending the University of Phoenix on-line in pursuit of her BSN. She can be reached at Birdijo@aol.com.

An excerpt from Leave No Nurse Behind: Nurses Working with disAbilities by Donna Carol Maheady, ARNP, EdD, founder of www.ExceptionalNurse.com. Permission to reprint granted by Ms. Maheady. The book is available at www.Amazon.com and other online booksellers. ISBN # 0-595-39649-6.

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