Thursday, May 21, 2009

Working - Or Not - With Sjogren's Syndrome

Image found here

Recently, someone asked me why I am not working. I haven't heard that question for awhile, and it took me by surprise. 

The person who asked didn't know me well, and was only responding to my now automatic answer when she asked - "So, what do you do?"

I replied with my usual I'm a retired nurse routine. She looked at me quizzically for a few seconds and remarked that she had heard there was a nursing shortage right now, implying that since I looked somewhat normal that I should really be wearing scrubs and schlepping my stethoscope around. 

Which brought to mind what a difficult process it was to arrive at that humbling decision to leave nursing. 

I really do miss working as an RN, specifically when I was working in a dialysis unit. Dialysis is a process that purifies the blood of waste products - taking over the job for kidneys that don't work anymore. Once the orders are written by a nephrologist, a dialysis nurse functions very independently, which is one of the reasons that I enjoyed that job. 

I am a control freak. I admit that freely. Just ask John or the kids. Being a dialysis nurse just fed that freakiness to the max. I miss those days that I'd blow into an ICU, dialysis technician and machine following closely behind. 

"Hi everyone, need the chart, labs, most recent chest film, oh, and move that bed, willya?" 

With monitors beeping and blood pump whirring, seemingly miles of clear tubing would fill with dark red blood. Other staff members who were acquainted with my mode of operation knew better than to even look too closely at my patient or my machine. Once Nurse Julia was at the dialysis helm, nothing escaped my examination. Staff nurse giving the patient meds? Ask Julia. Need lab work drawn? Ask Miss Control Freak Nurse. Surgical resident trying to examine the very large blood catheter required for blood access? Back off, Buster! 

Nobody - but nobody - administered  any kind of care to my dialysis patients except me, and for very good reason. When performed competently, dialysis is a life-saving measure, especially in a critical care situation. However, since it requires at least one fifth of the body's blood volume to be chasing around in the dialysis mechanisms at all times, and drastically changes the blood's chemistry and water components, the potential for significant injury is also present. Hence the Julia the Obsessive/Compulsive Bulldog Nurse routine. 

I loved it. Powah! Bwahahahaha! Oh, yes, and I'm helping people.....

Fast forward several years, and I was feeling the effects of Sjogren's fatigue and brain fog. I found myself checking and checking and re-checking my work. I came home and collapsed, both physically and mentally. I lay awake at night, rethinking my decisions and skills. "Am I giving good care? Am I making the correct decisions? Will I make a mistake? What is happening to me? "

In evaluating my situation, I soon came to realize that the importance of giving excellent patient care far outweighed my need to work. With great reluctance, I made the decision to quit working as a nurse before I made a mistake that would impact someone else's health and life. For Julia AKA Florence Nightingale Nurse, this choice was extremely difficult. 

I missed those days when I felt I could complete a very complex task competently. My new schedule provided very few opportunities when those around me say - "Thank goodness she's here!", and I could protest modestly that I'm only doing my job. Aw shucks, folks....

I have concluded that there is an enormous lesson for me to learn in all this. I am suspicious that the powers that be have decided that my ego needed a serious infusion of humility. 

I could see St. Peter peering down from those heavenly gates and commenting to the angel next to him, "Check out this lady - she thinks she's a real hot shot. Won't work up here, will it? Let's help her make a big attitude adjustment. Let's see.....let's give her something that really takes her down a peg but isn't very obvious to others. Something that forces her to acknowledge her weaknesses as well as her strengths."

Well, thanks, St. Pete. I guess. I think I'm in the remedial class for this lesson. Hope I can graduate from this school soon.


ConnieFoggles said...

Perfect explanation of why you are not working. Although I am not a nurse, I was making mistakes all the time at work and not having any kind of life outside of work due to the fatigue.

BTW, I'm a control freak too.

Vicky said...

Well...if I ever need dialysis..I still would want someone like you. I mean that in a good way. You care. It had to be a hard decision for you. But, remember you help others on here. You were the first person I reached out to when I was feeling so alone. I thought I was by myself. Thank you.

Julia Oleinik said...

Thanks for the comments, Vicky and Connie.

As much as I may be helping others by sharing my experiences on this blog, I think that I'm also helping myself work through the difficult and lengthy process of acceptance of my disease.

I have learned a great deal from reading Vicky's experiences as a someone looking at a kidney transplant as well. Check out her blog - Sjogren's and Me - listed on my links sidebar.

Connie's blog can be found at:

Terese said...

Your skills were MUCH appreciated when my family was in need. We are lucky to know someone with such a background and the willingness to share. Once a nurse, always a nurse. Thank heavens for that.

Julia Oleinik said...

You are welcome. It was a great experience for me, as well.

Wendy said...

Powerful, exceptional post. I'm in awe of what you achieved and what you had to give up--you had such a challenging, demanding and rewarding career for which you must have worked very hard and made many sacrifices. It must have been a gut-wrenching decision. Did you already have your diagnosis, I wonder? How about Connie? I remember sliding inexplicably into a state of "inattentiveness" and "laziness" at our own business. It made me feel ashamed--and very frustrated. My husband found it just as baffling. I remember telling him, "I just can't keep up this pace anymore!" I thought I was just getting old, awfully fast. It was a confusing time. Thanks for the links to other great blogs.

Unknown said...

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LM said...

First, I'm new to the blog. I've been reading for a while, but never posted. I'm so relieved to find people who "get it". Especially when everyone seems to think dry eyes and mouth are the extent of it all!

I was only diagnosed in January of 2012. I'd been feeling symptoms and things for quite some time, but like so many other chalked it up to other things. I stopped working back in the Summer. My days were filled with fog and being unable to complete a simple Excel spreadsheet really frustrated me. I would come home and need to decide between cooking dinner and being a good Mother and Wife, or sinking myself into the recliner and letting it all go. My final decision moment came when my Son said, "Mommy, all you ever do is sleep. Why can't you go with me to the park?" I cried, cried, and cried a little more. The guilt was overwhelming. He was right. I was missing it all. I stopped working. Had a great Summer, felt good and started to wonder if maybe I'd acted too quickly and gave up a job with really great people. Then...winter came. I think we all know what that means. I have felt pretty rough for 3 months. I've had more bad days than good. There is no way I could have been working. I'm not on disability, not sure I'm ready to fight that battle, but...I'm really blessed with a hard working husband. I feel overwhelmed that he must shoulder the financial burden, but he tells me I need to take care of me first, in order to take care of the family and be part of it. I think he is right. I wish you all much luck in your decisions regarding work and more good days than bad!

Unknown said...

I'm a peds nurse and love my job fiercely and just had to quit due to Sjogrens. It's breaking my heart but just can't handle it anymore. I'm now a stay at home mom to my 2yr old and enjoying it as much as I can. Life throws curve balls just have to keep in trucking.

Unknown said...

I'm a peds nurse and love my job fiercely and just had to quit due to Sjogrens. It's breaking my heart but just can't handle it anymore. I'm now a stay at home mom to my 2yr old and enjoying it as much as I can. Life throws curve balls just have to keep in trucking.