when to decide to go on disability?
 

Hi fellow sick people :o)...I was wondering when and if any of you are on disability? I have moderate AA now, and was wondering when to throw in the towel and quit work to take care of myself? I know how important diet and exercise is, but can't seem to do it all and work full time as a nurse :o(. It takes everything I have just to go to work (and come home!). Any thoughts? I would love to know how any of you cope with work and trying to stay healthy/balance work/home/motherhood?

Linda,

Is your goal just to have more time to take care of yourself or do you also worry that working is a direct problem for your health? For example, do you come home exhausted? If so then something needs to change. Work can pay the bills and even give us satisfaction but health has to come first.

Are you thinking about a temporary leave on disability or an early retirement? If it's temporary, it may help you get a handle on your health as you deal with aplastic anemia. If it's retirement, that's a very personal decision and hard for a lot of people to make. Chirley had to decide when to stop working too, although in her case an uncooperative employer was the primary problem. She posted about it in her threads here and here.

Is it an all-or-nothing choice for you? Rather that not working at all could you work part time (fewer days or fewer hours) instead of full time?

If you just can't find enough hours in the day for everything you do, you're not alone, and not just among patients. We can all tend to overcommit ourselves. There are lots of time management tips that we can all use to make more time for ourselves but they only go so far. My wife and I learned, when she was first sick, that there are activites you can give up or cut back on once you realize they aren't as necessary as you thought.

The fact that you are worried about being able to take care of yourself says a lot. It sounds like it'll be on your mind unless you do something about it. If you really can't keep with it all, and your family can manage without you working, giving up working will lift a great burden.

Since you'll be at the Hope, Steps & A Cure Walk in Austin this weekend, I hope you get to ask some other patients about it while you are there.

I work full time as a nurse in a pediatric hospital. I worked all the way up to treatment for severe AA and only worked a few days here and there inbetween treatment and transplant. I just recently started work again and I am exhausted. I am trying to build up my activity level so I can continue working full time. I think it is a personal decision that every person has to make. Also what does your doctor recommend?

Laura

Hi Linda and Laura.

I'll come clean, I also am a nurse. I tried to cover this up because I have worked in Infection Management and ancillary services for so long, I haven't kept up with everything that goes on. My scope of knowledge is very restricted and if you say you're a nurse you're expected to know what people are talking about health wise. I have basically been doing data collection, wound surveillance and assistance with research projects. It's left me out of the loop with a lot of things.

I find it interesting that there a number of nurses here. ?? why??. My boss of 20 years the doctor in charge of the dept has just been diagnosed with Acute Myelomonocytic Leukaemia. One of his practice partners died about 5 years ago from leukaemia. Perhaps we all come into contact with something toxic. In my case I also worked in a nuclear medicine facility in the early 80s and used to inject the radio isotopes patient after patient. We weren't issued with any radiation counters or protective clothing and I think that's where my problem started. A previous haem I went to agreed with me but said he would not commit that to paper or repeat that to anyone outside that room.

Yes, as for work. I became so exhausted I think I was becoming a danger to others. I didn't think that at the time, this is in hindsight. I was so tired I could quite easily have entered data incorrectly and skewed research results or missed signs of potential disease progression etc.

My main problem was that I reduced my hours due to fatigue and then because I was part time, I was not given priority to work the shifts that I needed to have my transfusions. I would come to work and the roster would have been changed to accomodate the full time staff. And besides disclosing my personal medical information to the other staff members there was no way I was going to get the shifts that I needed. I was also very concerned about working so closely with infectious patients when I had severe neutropenia. I was always worried.

Now that I have stopped work, I can't say that I don't get tired, I do, BUT I don't have to drag myself to work. I can rest. It feels decadent and I don't regret giving up work one bit.

My haematologist believes that working is good for you mentally and physically and wasn't totally behind my decision to leave work. My GP was the one who supported me in that decision. Now that my neutrophils are almost non existent and my disease has progressed, the haematologist wants me to apply for total and permanent disability but I'm happy living on my income protection insurance payments. I have no mortgage, savings in the bank and a weekly income. Why would I want to give up the weekly income for a lesser 2 weekly pension??

This is your decision to make, it's not an easy one, it depends on your individual circumstances. As someone on this forum said to me ..it's not giving in, it's looking after yourself...

Best of luck.

I am 26 and have worked at Mayo Clinic my entire career (4 years this summer). I love working as a nurse but it is hard to work around infectious patients when your neutrophils are so low. I worked for many months with a nonexistant neutrophil count. My coworkers were great and tried to give me noninfectious patients. Now that I am back at work they continue to do the same...alright I have rambled on enough about something that doesn't fit in this part of the forum...Anyhow, best of luck in whatever you decide. Laura

Thank you!
 

Thanks ladies, for all your advice, comments, & personal stories, I appreciate them so much :o). You guys are all wonderful! It is surprising how we are all nurses with these diseases. I wonder why this is happening to all of us? I work in the NICU now to prevent myself from getting anything adults have, but did med-surg, ortho-neuro, and home health for many years after graduation. I'm curious, did or do ya'll work day or night shift? I am currently night shift, but waiting for a day shift position to help my immune system heal at night like its supposed to. What are ya'll doing to stay healthy? I have made alot of dietary changes & take supplements, trying to be vegan mon-fri.

I work on the peds floor day/night rotation. They do not have straight positions on the floor, they all rotate. I just try to live a normal, healthy life. I do not do any extras but take a multivitamin.

Laura

I went on SS disability and should receive my first check this month. I figure you only live once and the stress of working, being tired, worrying, dealing with less than nice bosses was just not worth it. I figure if my sct goes well I can always get a job within the SS guidelines. Or, I can volunteer to help others in hospice or someplace where others have needs. I felt such a relief when I made my decision. Lori

I too was a pediatric nurse for 17 years before I was dx. I had to give up nursing as soon as I was dx. Fatique and 2-3 trips a week to get plts and bld. I worked in the ICU and the worst thing is being immunosuppressed and neutropentic. I am scheduled next week for BM transplant. I hope one day maybe I can return to nursing but my doctors say 1-2 years!

Hi,

Seems like a lot of health industry related people have BM problems. I too, am/was a registered nurse for 36 years.

Selina
 

Good luck with your transplant. I hope it is the start of a great new Year for you!