Careers for us? What’s a good fit?

Hi Jamie

It is great that you have gone for your Masters – congrats! I am a retired Management Consultant; I had to stop doing client facing work because it was too exhausting, as well as I couldn’t keep up with the “thinking ahead” requirements.

I have been doing ok doing internal work, including some teaching – averaging only 15 hours a week. Would it work for you to teach part-time, taking some time to work out how many hours you can do a week on top of your other commitments?

It has been quite “make it up as you go along” for me, but after about two years now, I think that I have a routine that works – I work Tuesdays and Thursdays so that I have plenty of time to recover – as well as being home by 4 so that I can spend time with my son. As well, when I teach, I spend quite awhile planning and studying ahead of time when I can, so that I don’t lose it half way through. This is quite a different approach to the old days, but things change and you have to adapt!

Take care
Debs

Jamie,

I went back to work four years after having GBS. I was a Program Co-ordinator in a vocational setting for individuals with profound and challenging disabilties. I started working four hours a day and worked my way up in the first year to full time and worked full time up until 7 years ago when I got laid off.

Today I am on the faculty of David Mandt and Associates. I travel all over North America teaching crisis prevention to organizations such as healthcare, disability, education etc. Anywhere where people are supported in any capacity. It is physically demanding and some days I am wiped, but I rest when I need to (was in bed at 8:30 last night for example) and am off to work here in a moment. There is work out there for us, if we are creative in our thinking. Take care and talk to you later.

I would definitely have a hard time working a job where I would have to be on my feet all day and/or work long hours, and nursing definitely fits those criteria!

Teaching in short increments would be all right for me, I think, but teaching all day would be hard because I’d have to be on my feet a lot and my lungs would get tired from talking so much. So I guess teaching in moderation might be an option for me post-GBS, but not teaching full-time.

As it is, I got a full-time job and started working a little over a year after GBS hit me. It is 95% a desk job with a parking lot right next to the building where I work, an elevator that goes up to the floor I work on, and very liberal benefits. I think I would have a hard time doing anything but a desk job long-term with the limitations I currently face. If I had to push myself physically every day at my job and suffered for it, I don’t think it would be worthwhile.

I think something like case management where you could spend most of your time off your feet would be most promising. It’s hard for me not to push myself beyond my limits when the circumstance demands, so I try really hard not to put myself in those situations if I can help it. Choosing to proceed with your career in a way that would allow you to rest physically while you work mentally would be very smart.

Luckily, I think you’re in an excellent field where you can try some different things. Nursing is in great demand, as you said, and anyone with your type of expertise can do lots of different types of things with just a little bit of extra motivation.

Best of luck to you! 🙂

Jamie:

I’m not sure there is a GBS career out there. Anything worth doing is going to be demanding in one way or another. I think you need to be looking at is a job that is somewhat less than full time so that you will get opportunities to rest between shifts or something that allows four day weeks once or twice a month.

You don’t need to retrain yourself for another profession. You need to retrain yourself how your existing profession can work with GBS.

Remember, everyone is different in regards to how GBS affects them. Just because some people had to stop teaching, doesn’t mean you will have to.

Lee

Lee is right. Where there is a will there is a way. I teach everyday that I am on the road. I have asked for a stool to be put in my training room so that I can “perch” while I teach. It gets me off my feet and gives me a bit of a chance to rest. My employer bought me a voice amplifier so that I don’t have to overtax my throat/lungs/vocal chords. ( I have vocal chord damage from being on a respirator too long before intubation while I had GBS). I am able to split my physical skills training up so that I do it over a three day period rather than all on one or two days. I have a very supportive employer who works with me to help me keep well and safe. As I said earlier, I rest each evening and take every other week off. It is working for me. It may not work for others.

Based on some of your posts here, you sound like you would be a very awesome nurse, full of love and compassion. You need to teach that to others so that they can carry on that philosophy. I think you could make teaching nursing work for you. Who better than the health care profession to be challenged to find a way to support someone with a challenging illness. Go for it if you believe it is something you want to do.

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

Jamie,
I think education is a great idea. You could even do hospital staff development. I don’t know if these avenues would interest you or not as they are working with staff and not patients but I used to work in the Quality department. It consisted of chart reviews, data collection and then meetings to improve the care. I worked with Dr., nurses and other ancillary staff.
Another avenue that is an emerging field is informatics. I had the opportunity before I got sick to head up the project to convert our hospitals computer systems. It was more stressful than I could do now but there are still “jobs” that I could do in that field. It is rewarding to work with staff to make thier jobs easier too. I hope to return to this at the first of the year.
I just thought I’d give you a couple more ideas…..like you don’t have enough choices! :rolleyes: I know being a Mom will consume you for awhile!

Good Morning Jamie and others,

I am also an RN but without an MSN. I never had the money to further my education, nor the time as a single parent. It’s funny this topic came up because I am so frustrated with my employer, who is NOT so accomodating. I have been sick for 15 months now and worked up until the end of March when I just couldn’t keep up with patient schedules anymore. I asked for a lighter schedule by just one patient and they told me I couldn’t work and to take FMLA. That ends in a couple of days and STD is still not approved. They are waiting for documentation, etc. Meanwhile, I am going down the tubes, both physically and financially. This week is really bad and I am figuring I am having a relapse. We increased IVIG to weekly, which I am getting right now:) On that note, the organization I work for says there are no positions I can do in their entire system with my limits. I can’t be up and in an office by 8 am, maybe 11 am. And then I am exhausted by the afternoon, etc. Most of the clinical research positions and other’s that I see as desk oriented require experience, which I don’t have. Online teaching requires a MSN. I think all of you are fortunate to have very helpful employers. Unfortunately I haven’t been that lucky, but I am at my wits end. I don’t have the energy to go into another career. And I love nursing. Just wanted to vent because this is soooo waying down on me right now. I feel very discriminated against because of my current disability, can’t use a cane at work, no light duty allowed, etc. Otherwise, I am great:) I will let you know if I come up with other job ideas though that might work for us…..Gabrielle

Gabrielle, I feel like we are a little bit sisters since we were diagnosed about the same time and have so many similarities in disease and in life. Hang in there. I wish there were a way to make life better for you right now, but all I can really say is to try hard to keep fighting despite the challenges. I am sure that you have already thought of all this, but I will say it anyway.
1. It does not seem the immunoglobulin is working enough. Has there been thoughts of an alternative? Didn’t you get steroid pulses as well before? Did that help?
2. Keep “agitating” about the disability and advocate for yourself. Unfortunately, for this area in life, you seem to have to be really pushy because the system is so tough to get to make a decision.
3. I did not mean to imply that all of life has been smooth and that my hospital has been always supportive, but I have tried my best to present alternatives and options to them upfront rather than wait for them to think of ways for me to continue to help. This has at times taken a lot of “background” work to think and discuss with others, but it seems to pay off to go in saying “I have seen this need and have this idea of how to fulfill it AND it is something I can do well right now whereas many of the “more traditional” job roles would be really challenging right now. I have tried not to say “I can’t do this” but rather say “this I can do instead”. I do not say this to mean that this is what you should do or that this is the right way, because each situation is different. What seems to me is that the people you are talking to are not supportive and perhaps you need to try to talk to others at your current place of employment. How about another department or area? I know well it is so hard to think about changes, but the tiny point is that it is your life and passion to work and you ultimately are in charge of it. This is meant as encouragement. Really think about job sharing or phone nurse. I know you have thought of all this, but my heart just goes out to you. If you still are blocked out, think about career counseling. There was someone recently on the forum talking about job modification and return to work issues–I think they were disability counselors. For example it sounds wrong that you cannot use a cane at work.
WithHope

Hi WithHope,

There are a couple of us in the medical field here and I do know that our “issues” are quite similiar. I haven’t given up hope, but am just unbelievablely frustrated with my employer. I asked for accomodation back in October, but my supervisor never turned the note in. I didn’t know that, so some days they lightened my schedule, and some days just killed me. When I went out on FMLA, I was having to call out the day after a terrible schedule which used a lot of PTO time.

Anyways, I am looking into other careers in nursing, and can be quite creative. I was hoping the STD would be approved so I could concentrate on figuring out a treatment that would work for me and get back to work. I do get Solumedrol 125mg IV with my IVIG. So now that will be once a week. Today I feel pretty good but had my infusion yesterday. And I could probably turn my verbage around to “I can” instead of “I can’t”. But getting up and out the door by 8 am isn’t one of those options:) Thanks for the encouragement too. I attended an Outward Bound course many years ago, which basically taught me I can do anything I want to. I have been extremely successful in my life, and this is just a hiccup right now and will pass….Have a good weekend! Gabrielle

There seems always more to say, doesn’t there?!!
One other important thing that I did was to consider the fact that some people have more long term vision and more ability to troubleshoot or “think outside of the box”. My immediate boss/supervisor does not have these as strong suits, so I went above to people that do to get support and then went back able to say to the immediate supervisor that I had talked with others (name dropping–it is my life!!!) who thought X, Y, and Z were pretty good options. I told all that I was trying to find ways to help the system be better and that I was trying to get lots of opinions–as backup to not having feelings hurt. I was really careful to not say I did not like something, but raised suggestions that an alternative might work better and “wouldn’t it be worth a trial”. I talked a lot about temporary.
A good friend (my best friend before this illness-she could not cope with the changes in my life) used to tell me that you need to market your career as aggressively as people market products and to always think of ways to “spin” to the positive–not stepping on others, but reinforcing why something might be good for the system as well as be (incidentally!) good for you in this time of challenges. She often said to present to bosses subtly things that would be good for them (if you did all the hard work but they could get/take some (most) of the credit! Sometimes it is better to work than to get all the credit for it–thinking about how it helps others.
Anyway, got to go work! WithHope

You are correct in presenting a solution and giving someone else credit. I am very good at wording things that way. My position was in home care, on call from 5 p until 8 am the next day. They gave me some patients too if they couldn’t cover them in the daytime. I was not supposed to have more than 4 scheduled patients, plus the on call. What I proposed, since no one likes call, is to not schedule more than 3 plus call patients. What they scheduled was 5 or 6 plus call after that and it became more and more frequent. I figured they were still getting their call covered, plus extra patient visits, and I would still be able to keep my position. I believe things happen for a reason though, so we’ll see what happens. Thanks for your input, it has been helpful!

Jamie,

I had to change professions after I contracted GBS the second time.

I was in a Juvenile Probation position. Now, I’ve become a Certified Court Reporter, and I absolutely love it. I thought I would miss kicking doors in, and chasing juvenile delinquents around, but I love Court Reporting.

Just thought I would throw my hat in the ring.

Jamie,

More pay 😀 .

No phone calls at 2:00 a.m. about juveniles breaking into buildings 😮 .

Previous Court Reporter was retiring 😉 .

I took the plunge and have enjoyed it since 😎 .

Hi Jamie! That would be perfect if you can PM that information. I have a complete office set up at home so that would work out great for now. I have also inquired into the BSN and MSN programs. Yikes, they are big bucks! There is one program here that I can do online, with a face to face in the end of the program. They said they would work within my limits though so that would be nice. Thank you!

I just read your other post! Good luck and whenever you can would be great….thank you!

Jamie, Gabrielle, and everyone-am going to throw in my two cents-have done everything in nursing over the 32 years, and sometimes my job called from an MSN, but due to shortage and my experience, they gave me a shot several times, and I was good at it. The case management positions I had required LOTS of walking, multitasking, and constant interruptions, I was good at it and loved it, but it was very physical. Gab, I am not a morning person, but I wondered if you had a “job-share” program-they have them by me, and two people share a full time position-just a thought-you work with each other on what time you work and when you need time off, etc. And I have to talk about the oncall stuff-I was on call 24/7 and man did I get abused and underpaid on that stuff-somedays I wanted to throw that beeper and phone and overpaging into the lake!!!! There really are jobs out there-you just have to stabilize your health enough to find a job that you can do and that also can accomodate you on your bad days. Jamie, I wrote down that NTI info-do you have a www. site or is it [url]www.NTI.com?[/url] I also entered another site on my first story. Have had a few roadblocks, but getting closer to checking something out. I have a home office and quiet setting(no kids or pets), so I feel like I want and need to do something. When you are good at one thing, you feel like, with a little training, you can be good at anything, right? Hang in there everybody, and in Norb’s words-“Don’t ever give up.” Great words I think. Emma

Hi all, I remember a post about an author, Donna Jackson, who had/has GBS, and wrote a book about autoimmune disease and everyone who posted was interested in reading it or had read it and liked it. I had emailed her about her book and this website. She sent me an email about women working with chronic illnesses and is writing an article and would like some input. Here’s what she sent:

Hi All,

Forgive the intrusion for those to whom this most certainly will not apply — but please feel free to pass it along to those to who might be interested in taking part in this article for MORE magazine.

I’ve just finished writing a piece for MORE magazine on working while handling a chronic illness (including autoimmune disease) and they’d like me to add a sidebar with short quotes from women from around the country on their “best coping strategies” (see below).

Interviewees must be:
1) between the ages of 40 — 59
2) working 25 or more hours a week
3) suffering from a chronic illness (autoimmune disease, cancer, heart disease, or other chronic health conditions)

If you or someone you know meets the above criteria we’d love to hear their/your responses to the following questions. We’d like to know your:
1) name
2) age
3) occupation
4) city/state
5) illness you suffer from
6) Do you have any novel coping strategies for handling a chronic illness at work? (These might be mental, emotional, attitudinal, physical or practical coping strategies.) Have you had an epiphany that has helped you to do much better handling a chronic illness at work? (E.g. “A turning point in my work life came when I realized I had to leave my blackberry at work so that I could get the rest I needed at home…. ” Or, “My best coping strategy is to remember that… ”
7) In my reporting a number of women told me that one of the hardest issues they face is to put a bright face on their illness while at work or at work functions, giving everyone the “thumbs up” and appearing upbeat for the sake of others — even when they are not feeling well. Is this true for you and can you describe what these moments at work are like, how they feel, and how you deal with them?

Thanks so much!

Donna
Donna Jackson Nakazawa
[url]www.donnajacksonnakazawa.com[/url]
THE AUTOIMMUNE EPIDEMIC: Bodies Gone Haywire in a World out of Balance

Sorry, Jamie, I read your post and didn’t read your title,da-:eek: Will look that up. Thanks, Emma

Jamie-
Just had to add to your post. I am returning to nursing school in fall after having to drop out of my junior year in 2/06 due to GBS. I can say I am close to a 100% recovery, but it took 2 years to feel like my old self. I know GBS effects everyone differently, and I am not familiar with your case but the day may come where you are strong enough and have endurance again. Good luck to you in your studies.

I have a question for you working GBS’ers in the medical field.
My doctor advised me to stay away from sick people and/or
anyone with the flu etc… hospitals as much as possible.
So how is it that you are able to stay in remission and healthy
working in your environment? I realize everyone is different so
maybe that is it, I went back to work on the airplane and got sick
(The flu) got a relapse and am much worse and never quite
recouped. Haven’t been able to work since because my stamina,
fatigue, numbness, tingling factor forbids me and husband lets
me slide.(thank god!) I would love to work in a hospital but am
afraid to any info would be appreciated.

Thanks,

just Joyce:o

Jamie-the [url]www.NTI[/url] and the other one I posted of [url]www.mytickettoworkathome.org[/url] brought me to the same site. Keep studying girl, and I am going to go in and explore the workat home site a little more-created it in my favorites, so can take my time looking at it. It does look credible to me. Emma

Joyce-My neuro calls airplanes “germ pits “. I really have to be careful around public places, ie churches, larger grocery stores, hospitals, flying, etc. because I get pneumonia so fast. Hospitals, when cultures come back from faucets, door knobs, that sort of thing, show various bugs too-but quality nurses keep a close eye on surgery post op infections and other departments and report anything immediately, so I think that part is good. My family doctor schedules me around the really sick patients that come in, so I am seen first of the day or afternoon. Hope this helps. Sorry you are fighting to recover. Emma

I am wondering if they advise us to not work in these settings because they do not know what virus leads our immune systems to turn on themselves and they don’t want us to risk getting another virus/infection that can lead to another round of GBS. I would see it like them telling us not to get a flu shot. Any thoughts on that?

I know how you feel girl-I too am still afraid of illness and any vaccines. I am going through my clinicals with no vaccines, I will make sure my neuro sees to it and signs me off on that. It does scare me. Now, when I had gbs, I tested positive for mycoplasma pneumoniae-walking pneumonia. ( I was sick with a real bad cold before the gbs.) I have a friend who had gbs and graduated to become a nutritionist in the hospital, and there are nurses I know who have recovered from gbs and are still nurses. My neurologist has been encouraging me to return to nursing, and says I should not worry about it happening again.

Hi everyone-I had a couple thoughts, actually one thought, one question.

Thought-people go to their doctor/ER with a complaint and want the doc to diagnose immediately and call it something and get treated and recover and go about their life; the frustrating part of gbs/cidp is that the cause, although clearer with gbs, is unclear, and we know there are those little buggers-the antibodies-lying dormant waiting to strike when-who knows? Look at chicken pox-shingles, as one example. Makes us hesitate to get on with our lives. Guess we be as careful as we can, REST, and take it one day at a time.

Do you ever wonder, nurses, that maybe the immunizations we got, in my case the hepatitis immun. and booster, has caused our gbs/cidp? I wonder about that with my cidp. Hope you guys don’t mind that I am on your gbs thread, but you have a lot of good things to say too.

Make it a good day today. Emma

Since I work with children with autoimmune diseases, I thought I might pipe in about infections and vaccinations. Some infections or vaccinations cause a non-specific turning on of the immune system as well as the specific response to the infection/vaccination. this can cause a flair in autoimmune diseases where the autoantibody is made more. One of my friends who is a pediatric neurology researcher at the same hospital where I work advised me to not do ward service this last winter because of the GBS diagnosis, the fatigue and trouble walking, and exposure to lots of sick kids (who are frequently too young to cover their mouths when they cough, etc). She was worried about exacerbation of the GBS or potential “conversion” to CIDP. The immunologists for the children DO recommend to be careful because the risk of flaring their autoimmune diseases with infection or immunizations until all that has “settled down” and the “immune system has reset/rebalanced itself. The time to this is going to vary for each person as well as whether ornot they flare with a new stimulus.
WithHope for cure of these diseases.

WithHope-my neuro has said no to the flu, pneumo vac-wondered about your thought with the shingles vaccine. I went to a seminar in Houston and one class was re immunizations for children-that vaccinating kids did not guarantee the child would not get the disease, and that actually the immunized child got a worse case of, example measles, than an unimmunized child that got the measles, then developed a natural immunity to them. I wondered about the shingles vaccine then-I had chicken pox as a kid, so have a natural immunity, but I watched my dad suffer a very painful case of shingles and a few other adults in my family, and wondered if you, or anyone, here have gotten the shingles vaccine. I forgot to ask my neuro about that, but those dormant antibodies seem deadly if they do attack. And I understand the vaccine/autoimmune part, well I think I do, but just wondered if the shingles vaccine gets lumped in with all the other “no, don’t get it” vaccines. Emma

Emma,

Chicken pox and shingles (aka herpes zoster) are two different manifestations of the same underlying disease, an infection by varicella zoster virus (VZV). After the chicken pox, the virus is not eliminated from the body; it just hides out in the nerves. If it becomes active, it shows up as the skin disease shingles. The shingles vaccine is the same attenuated virus as the chicken pox vaccine, just more concentrated. It is designed to cause an immune response in older adults, whose immune systems naturally degrade with time. About 10 to 20 percent of all people who have had chicken pox will develop shingles. I don’t know if the symptoms are milder than if an older person contracts VZV and it develops immediately into shingles.

As to whether you should take this vaccine, I don’t know.

MarkEns

MarkEns-thank for replying. Another question for my neuro. Emma