Other options

I am also in the health field, caring for patients and doing research and teaching. There is a great need for nurses in many, many areas and not all of them have the intensity of physical demands that floor or clinic nursing have. As mentioned, if you have a gift for teaching, this is very needed. You can be creative about this to make it less physically demanding. For example, I sit down during lectures. Sure it is not the “norm” for teachers, but why not??? Powerpoint is great, so one does not have to write on a chalkboard (!!!!–more energy saved). On-line teaching is often not real-time, so you might could work on it in parts.

Case management is a big deal for us. We have two full-time nurses doing this for our department (Pediatric Hematology and Oncology). Most of the time, theirs is a sit down with computer and phone type job. If you were to get your own office, patients/families could come to you rather than you having to go to them. Regarding keeping up with the team, I got an electric scooter. Ours is one of the largest children’s hospitals in the nation and I could not walk all over it after GBS. I keep the scooter at the hospital (although it can be taken apart to go home, it is still rather heavy for me to lift in my current wimpiness). It will not work to go easily into patient rooms or to do hands-on patient care, but it does help tremendously to go from one place in the hospital to another. I put my walker on the back of the scooter and use that to walk around the floors when I get there.

I have found that the most important things in continuing to work full-time despite GBS (particularly the trouble walking and the fatigue) are 1. trying to be positive and to look creatively for ways to make things happen rather than accept the “usual” way as the only way. This takes both openness to problem solving on my side and on the hospitals. 2. I had to learn to give up some of the pride of independence and accept that to keep working I had to use assist devices (cane, walker, and scooter) as well as change what had been the “way I did things” for a long time (more use of phone, less going from one place to another, less carrying, etc). 3. I think also a person has to keep centered on why they want to do this in the first place. Most of us do this because we like helping people and making a difference in people’s lives. If this is the goal, the center of what we aim for, then sometimes it seems easier to keep in focus that the physical parts are not the only parts or often the most important parts. If you use this to look for ways to be more useful/helpful to patients, this helps focus and to keep reminding yourself that you have special gifts, training, and experience to continue to make a big difference to people–it just may have to be in a slightly different way than the previous way.

Aside from all this, I wanted to also mention other areas in which nurses can work and make a big difference that are not as physically challenging.

1, We have a number of nurses in the clinical research office. A lot of this work is computer based, so not much walking. One of the nurses is clinical coordinator of the newest clinical trials in children’s cancers. She has patient face-to-face activities, but most of the job is making sure that everything happens exactly as it is supposed to happen (blood draws and testing, chemotherapy, documentation, etc) and supporting the families as they go through the intensity of treatments.
2. We have two nurses as clinical coordinators of the stem cell transplant program–again there is some face-to-face time, but a lot of coordination time including family interaction by phone.
3. I have a patient whose mom is a nurse and she started her own business being an advocate for people with cancer to help them figure out how to traverse the storms of the insurance side of things. This is an aspect of case managment that is coming more into prominence and is more patient oriented than “hospital” oriented. For our kids, it is especially important because childhood cancer is rare and some insurance companies say no because there have not comprehensive reviews and metanalyses of use of XX chemotherapy in YY rare form of childhood cancer. One of the nurses I used to work with moved to the “adult” side and provides support/links/resources/information to patients with cancer at our cancer center.
4. Another position that does not require too much walking that we have is phone nurse–to answer questions of families, record labs, link with satellite sites, etc. It is an invaluable position that two nurses share. Even in smaller hospitals, this is really needed for diabetes monitoring, patient follow-up after tests, refilling of prescriptions, prior authorization, etc. I think of these positions as part of the “personal touch” that is so important for families and that is being more appreciated now in the competitive world of big medicine.
5. A last option is insurance chart review. Many people doing this are nurses and it is a very important job. With online medical records or the chart after discharge, it could be done from a desk. Otherwise, it could be done with a scooter. I personally could not do this–I would shrivel up and wilt from missing “my kids” if I did not have some interaction with patients, but it is an option.
Sorry to be so long and wordy but this is something I have struggled a lot with in the last 15 months and thought a lot about throught the challenges of this disease.
WithHope for cure of these diseases
GBS 3/07