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Discussion Starter · #1 ·
Hi!! I a full time ICU/HDU nurse - been diagnosed with 'presumptive lupus' & the more info I read, I'm about 90% sure I am a new lupie.

Waiting to see the dermatologist on Mon & then a rheumatologist on Tues - I will then know for sure. I wil then speak to my matron afterwards.

I'm a little worried about my working future - my bloods said I had low white cell count & low neutrophils, therefore I must be vulnerable to infection & have the immunity of a cancer patient.

Should I be thinking about changing my job?? I just finished doing 3 long days (12 hour shifts) & my joints are absolutely agony now. I really don't want to go back to the wards......

Any nurses here that I can chat to?? esp ICU ones?

bb x
 

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Hi Sue,

Yes I'm one, but never ICU....

Actually there are heaps of nurses here, which if you think about it is only logical. What other profession has a predominance of women in their 20's to 50's (lupus' chief targets)? Nursing employs such huge numbers too, unlike say paelientologists (sp???), so really it is to be expected that there are lots of us with lupus:hehe: .

I've already given you my story, so won't bore you with it again....

All the best

X C X
 

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i am a midwife

hello Butterflee,

I am a midwife, and only working part-time at the moment, which is enough for me. I am actually on sick-leave at the moment as I am in a flare.

I think that this diagnosis is something that I recommend you are very open about to the APPROPRIATE people, ie your manager, occupational health, etc...you need to maintain good communication and always go to the GP whenever you are off-colour. You know how important documentation is in our profession. You have to take this kind of approach to the illness and your work. Make sure that everything you do about your Lupus, is always documented somewhere. Don't just take time off, always at least call your GP to let them know what is happening. If you ever have any problems in the future, then everything is in black and white somewhere.


The good thing seems to be that we are protected by law (disability law). I declared myself as disabled at my interview (you know the disablity box on application) and I think that its important to feel protected by law. The NHS are pretty good really, as long as you are on top of things at all times. For instance, i have asked to do only short days, early shifts, and no nights. This has been backed up by my rheumatologist and Occ Hea. Therefore, they cannot MAKE me do nights. If they do and I become ill, as far as I am concerned, THEY are liable for my illness.

Being very clear with everyone about your limitations, means that you wont be exploited. Make sure you get regular breaks. Take regular annual leave, and get your time owing! i have decided that no job is worth killing myself for, so I make sure that I am looked after at work.

Hope this helps.

Email me if you need any advice, and good luck!!

Smile x
 

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Hi, Butterflybee!

I'm a nurse, too. Was diagnosed 11 years ago, and have been working at an Internal Medicine office for the past year and a half, just 3 days a week. Thank goodness, my family can finally afford for me to work part-time! When I was diagnosed, I was working 6 days a week, some days 10-12 hours! Working fewer hours makes a HUGE difference in my health---I feel so much better now!

I agree with Smile...I learned my lesson "the hard way". I let my former employer nearly kill me before I finally stood up for my rights! Don't let anyone take advantage of you!!

All the best, Carlene
 

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Butterflybee,

Hi! As my name states I was an ICU Supervisor for several years until I got really sick and ended up a patient in my own unit. Once I got out and back on my feet, my doctor told me that I had to find another place to work or I would be in trouble. I transferred to Home Care, where I worked for several months until I found out that I had cervical cancer and had to have surgery. I then became very ill following the surgery and was in the ICU and IMC from Sept to Dec. I got out of the hospital and called my supervisor and told them that I could come back to work, my director called me the next day and fired me because I wasn't dependable.

My suggestion to you would to be very careful about depending on the National Disability Act. Quite frankly it doesn't mean diddly. I tried it and they informed me that because I had been so ill and that the reasono they fired me was because I was not dependable then I had nothing to stand on. I had worked at this hospital for 5 years. I worked 4 12-16 hour shifts, covered others shifts, came in extra. They also had a small hospital in a neighboring town that I worked at. I would do 2 12 hour shifts there to help cover and of course make the extra money. I did this for over 4 years and this was how it ended. They told me that they were trying to find another unit for me to work in but because of my illness, no one wanted me. I informed them that by sharing my medical information around, that was breaking HIPPA but I couldn't prove that they shared that information. I was devastated. Now, I have filed for disability and consider myself "retired". My doc informed me that I couldn't work as a nurse when I was sicker than the patients.

I miss nursing something terrible and I keep up on my CEU's,lisensures, etc. I doubt that I ever go back into nursing unless it would be an office nurse or school nurse. My fear is that I wouldn't be able work the hours. I am currently enrolled at the local junior college to take some classes this fall for several reasons. I am afraid that my brain is going to melt as well as getting my credits in line to possibly graduate and become a history teacher, health teacher.

Whether you stay in ICU or not is going to be a tough decision between you and your doctor. We both know what kind of infections we encounter in this department. I contracted mycoplasim pneumonia, histoplasmosis along with MRSA and VRE, and who knows what else. I was in remission from my Lupus for about 12 years and then all **** broke loose. While I am sure you are as big as an adrenaline junkie as I am/was it would br tough to change departments. I do not blame you about going to a regular floor. It would be a hard transition after ICU. I absolutely loved Home Care. While it was an obviously slower pace, I didn't have to ask to go to lunch or to the bathroom. I was actually getting to know alot about my patients and helping them stay in their home. I was able to arrange different services that they needed as well as find money for them to help pay for meds, equipment, housing needs, etc. I never knew just how rewarding it could be. I still see several of my patients at the store or Walmart, cell phone store, etc and they are still as pleasant as the day I first met them.

There are other departments that you could transfer to if you so choose that would have less infection rates. They would be: PACU, Surgery, Pre-surgery, Radiology Nurse,Educational Nurse, Life Flight, possibly Dialysis.

I hold nursing licenses in two states and I keep them current. I hope that one day I could get my Lupus either controllable or in remission again so that I could go back into nursing. Until that time, I live vicariously through my nursing friends and try to advise as best as I can using my nursing knowledge.

If you chose to remain in ICU, I do have some advise. Regardless of whatever the patient has, always wear gloves and a mask. You might also want to wear a surgical cap over your hair. Wash, wash and wash your hands again. Leave your shoes, pens, etc there at the hospital, do not bring them home. As soon as you get home strip out of your scrubs as well as socks, and under garments and take a shower. Wash your scrubs in hot water and do not wash them with family clothing. Take vitamins that are ok'd by your doc. Get plenty of rest and try not to over do. If your body says it is tired, listen to it. Get plenty of exercise. If you get a chance to go outside on breaks or lunch, do so to get some fresh air. If you are truly scared of a patient, as far as what infection they may have, such as uncontained MRSA or something, then by all means, ask for a change in assignment.

I am sorry to hear that you have Lupus, but there are lots of us nurses as well as others here to give you support or a good listening ear. This site contains a wealth of information that is easy to access. There are the messge boards which you have found that always has something new and seems you can always learn something new. There is also a chat room that is wonderful. It seems rather magical in that you can be in a down mood when you enter the chat room and when you leave, your side might hurt from laughing so much as will your face from smiling so much. Welcome and keep in touch.

Nancy
 

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hello butterfly, i have been a nurse for the last sixteen years. i presently work part time, three eight hour shifts a week on med/surg. I can get pretty tired out but as you know no matter how many hours you are scheduled for you never get out on time. Can you just cut to part time? Could you start looking for another opening in the facility you are in? Education, wound care etc...? You really do not have to tell them why you want to cut back in hours, just that it is a good time for you to do so.

Also i suggest wearing sun block due to all the floresent lights. I did not think I was sensitive to them but after trying sun block for a few days i noticed i did not have as much pain at the end of the day 8) . I also get the rit dye wash in sunblock and use it for my uniforms. Any little thing that can help seems to add up. I use banana boat 50, comes in a clear and blue tube, no smell.

I only have joint pain and sunsensitivity. No organ problems, knock on wood!
I am on plaq 200mg bid, tramadol 1-2 tab qid prn, pamalor 20mg q hs, and mobic 15mg daily. I originally cut my shifts back when I hurt my back two and a half years ago. Then one year ago they diag me with unspecified connective tissue disorder. Doc said yes it is lupus but if i put that down it can make it hard to get insurance etc... If i need it later for disability he can change it. you know the ins. compaines!;) .

Good luck and i hope you find some usefull info here. I did get my medical coding cert. but no part time openings yet. but that is my plan. until then i just keep plugging on. Lisa
 

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Hi butterflybee,
I'm not an RN, I'm an RT. I work primarily in the neo-natal ICU, but I do work in the adult ICUs too at times. I've had SLE (arthritis, chron.fatigue, raynauld's, fibro, etc.) for over 4 years.
Depending on how bad your symptoms are, you may not have to change anything.
Right now my symptoms are mild, but noticeable. I recently had to up my prednisone. Splitting up my days (nights, actually) really help. I work 2 nights, off 2, on 1 and off 2. (12hr shifts) When I work 3 straight, it takes me almost 24 hrs to recover.
I was in remission for a little over a year a while back and I worked 4-6 nights a week for about 8 months straight. Physically, I was able to handle it, but it was mentally challenging. I didn't get to see my friends or family. I barely had time to grocery shop or do laundry. But I was single and it was doable.
(where I work, RTs run around pretty much all night and we can have up to 8 pt's on ventilators in the adult ICU. Tonight I'm in the NICU and I have 13 babies that I see Q4. So pretty much, once I'm done w/1st rounds, and chart, it's time to start 2nd. I'm also covering 3 ORs on 2 floors[c-sections and high risk deliveries] So our workload isn't cake)
Don't give up on working/doing what you enjoy. Try to work with a schedule that's right for you and be aware of the signs and symptoms of your own body. Take time off if you need to.
Sometimes I feel like I can't get up to do anything. Now I know when my body's tired, I take a break and recover before it gets really bad.
I do pace myself now that I have a family (I have a 4 month old at home).
I don't want to wear myself out too soon :)
Good luck.
 

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I have been a nurse for over 11 1/2 years and used to work for an orthopedic surgeon, and was on my feet constantly. I was in the office and assisted in the operating room also. :(

I am now working in the county jail, and run the clinic there. I sit more now, but I still have to "run" around assisting the ARNP, and the doctor, get medication, dressings, run to medical records, the infirmary, etc., so I am getting very tired by the end of the day. :sad: I am supposed to work Mon-Fri, 8am-5pm, but I usually go into work at 6:30am, and don't get out until around 6pm. So, by that time, I am exhausted, and my arthritis is flaring really bad!!! :oops:

As a nurse, you just have to "suck it up", and work through everything and take care of everybody else, and get through your day. We don't have time to get down and have our medical issues until we get home. :mad: There are days, that I have a hard time just getting to the car and getting home. But, I have to work, so...... I'm just blessed that my husband is home with the kids and when I get home the house is cleaned, laundry is done, and dinner is ready. :hehe: He is a Disabled Veteran. That really helps to have him home.

Thanks for the venting space. :)

God Bless and take care! :wink2:
 

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Discussion Starter · #9 ·
Wow! so many of nurses here!

HI - thanks for all of your replies - they were all very helpful & provided a wide range of views.

I have had my lupus diagnosis confirmed this week by the dermatologist & the rheumatologist. The rheum dr said that I was not immunocomprismed in any way (even though I have low WCC & neutrophils??) & that there should be no problem in continuing to work in ICU. It is the only place I enjoy working as a nurse- I will try to keep working in this area for as long as I can.

I have changed my mind about telling my matron, luckily my sickness record is good & I haven't had to take time off sick during my lupus flare - I manage on ibuprofen & try not to work more than 2x12 hour shifts together. I did 3 last week & i was so tired the next day!! I'm also finding that night shifts wipe me out more since becoming ill. I am hoping the medication regime I have been put on will manage the lupus (i.e 200mg plaquinel OD, 20mg prednisolone).

2nd reason for not telling work yet is that my husband has got a new job & we will be selling up & moving to a new town, which means I will have to leave my job & look for a new one. My husband says sell the house first & leave the job till last thing. In current UK climate, nurse jobs pretty scarce at moment. But still too early to make plans yet, so for time being -keeping quiet & praying my meds work for me is what I'm hoping for.

I also find that when I am moping around the house feeling sorry for myself - my joint pain is worse, when I have to go to work, I don't have time to think about the pain, I just get on with it - work takes my mind of it & I don't feel as helpless - anyone else find this? It's as if adrenaline should be one of meds!

So I don't know what my long term plans are, but I'm a bit wary of telling everyone I have Lupus, as I don't feel it necessary, plus I'm not one for milking sympathy or rolling round in self pity if I can help it and I certainly hope that no one feels that I am implying any members of this site are! I AM NOT DISABLED (yet).

I hope everyone understands how I feel at the moment. Thanks for all your replies & support.

BB x
 

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No one is going to criticize your efforts in continuing to work. As long as you are able to work, by all means, do so. There are many people that are able to work. It sounds like you have a doctor that has your best interests at heart and is going to keep a close eye on you.

ICU was my love. My favorite patients were traumas and septicemias. I worked there for 5 years when I got sick. After recovering from a nasty illness is when I moved to home care and I found that I loved that as well. It was great going into their homes. I missed the bad cases, yes I am an adrenaline junky. I couldn't go to a med/surg floor either. It is too much of a cluster you-know-what. There is no real time with the patients, their families, etc. I do miss nursing terribly.

I hope and wish you the best in your nursing career as well as your husband new job!


Nancy
 

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HI, I am a nurse with Lupus

Hi,
I was diagnosed in 2001. I have been on disability for about 15 months.
I have been a nurse for 11 years. Not to angry to be out of the field. I feel burned out. Hard to deal with sickness for so long.

Just wanted to see how other nurse with this disease are dealing with their Diagnosis.
 

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Hi I have been reading these posts and just wanted to say thank you to all involved in the discussion. Im due to start my nurse training in January and have been worrying about whether im making the right decision after a discussion with my GP but after reading all your comments it has made me determined to go for it. Whatever my diagnoses may turn out to be ill just give it my best shot. Thanks and good luck to all others here.... Kiara
 

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Hi Kiara,

I recently spoke to my rheumy about this subject - how much can a lupie expect to accomplish study and work wise, and he was very positive about it - her recommended to go for it and see what happens. Often with lupus there are good times where you'll function nearly normally. Of course there will be problems too, but with good care these can often be lessend or shortened.

I'm a nurse/midwife, still practicing (albeit part time) after a lupus diagnosis. One of my clinical lecturers has/had lupus and managed to be a university lecturer too. I'm going to do my masters in midwifery next year, partly with the plan to get out of clinical work.

It is worth your being realistic about choices you make regarding work temop and sort. I can imaging that full time in A&E is very diffferent to 4 hour shifts as a GP's nurse. It is about finding the right job for yourself.

Most universities have disability assistance. Don't be afraid to ask for it, especially if it means you can get through the course instead of chosing to quit. Sometimes a bit of help makes all the difference.

All the best,

X C X
 
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