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October 15, 2007

Dystonia Hurts

Bekaserdans72x722 Beka - Another battle is coming. I feel tired, frustrated, and miserable. I was told on Friday that I could no longer directly sign-up and fill in staffing holes in one of the main ICUs. It is now expected I go to the nursing office to be reassigned to any one of the 4 ICUs. Defeat.

Over the past 9 months I have solely worked in a particular intensive care unit. I felt good and proud to work in this unit. They all knew me, understood my dystonia and DBS. I felt safe there. No questions asked. My brain had adjusted to the electromagnetic interference in this ICU; I no longer left my shifts suffering from brain fog or terrible pounding DBS headaches or dyslexia.

I was able to function as an ICU nurse relatively well at very low DBS settings although this had taken Dr. Mike well over 2 years to figure out. Now, I was being asked to sign in upstairs as some mangers felt that this one Unit was monopolizing their only float pool ICU RN. My answer to the problem: Find more nurses!

Friday night the tears came, my mother could not console me. I was going to have to relearn each ICU, each environment, each area where electromagnetic interference came from along with dealing with the reoccurrence of side effects mentioned before, which I had combated nicely by working solely in one ICU, my favorite – the CTICU. Things were going to have change and I was tired of constantly adjusting, constantly changing.

I spent 45 minutes on the phone with Dr. Mike (or else my mother was going to call him) crying, whimpering, and becoming half hysterical over the present situation. I was sooo tired of it all, of having a cureless disease, of not having people understand what dystonia was, what DBS and its environmental effects were on me. As Dr. Mike spoke rapidly, I could feel myself falling into a dark black pit. Towards the end of the conversation I never heard what he was saying.

It didn’t matter. It was useless. Fear began eating at my soul. People just didn’t understand the toll a movement disorder causes on a person or the strain associated with it every single day, whether it is physical, emotional, or functional strain. It required constant adjustments. Nor did many want to understand these effects.

By the end of the weekend I was calling all my friends in NYC and upstate asking them what to do about new unexpected situation. They were all working. I wanted to work, to give good care to my patients too. I just wasn’t going to be able to do so -- not on a consistent basis and in a consistent environment. I felt rotten and ate very little during the weekend. People understood cancer, diabetes, high blood pressure, but when were they going to understand the word “dystonia?”

It seemed to me that another lesson about dystonia and DBS had to be directed towards nursing administration with Dr. Mike leading the way this time. He had enough of all this as well. Letter writing explaining details of the procedure and side effects were not being heeded to and shuffled into my file. When were people going to GET it? Depression began setting in by Sunday afternoon, or was it disease desperation.

You tell me -- am I in for another battle? Nurses with disabilities – any advice on coping?

October 15, 2007 in Beka | Permalink

Comments

I wonder what happened to that nurse you describe ? Do you have her contact info ? It would be geat to connect with someone else who is a nurse with DBS. However , I do think your description of her post-DBS status is rather heavy-handed.And I wonder how you and your colleagues handled that change ?

Posted by: beka | Dec 7, 2007 3:19:10 PM

Years back, I worked with a nurse diagnosed with dystonia. She knew nothing of critical care but was humble enough to admit that despite her disability, she wanted to be a critical care nurse. She needed to learn a lot and we taught her, supported her, nurtured her, fought for her,stood by her, cried with her in her most trying moments.
Then one day, DBS changed her life forever. There were episodes of paranoia, depression, and an overwhelmingly egotistical self-deprecating attitude towards those she felt did not understand what DBS was. I tend to believe DBS evoked or tweaked a portion of her brain that stifled humility, that killed the love and appreciation for the beautiful things in life. She became a pompous, self-centered egomaniacal, spiteful, overbearing nurse. Do not blame me for not wanting to know anything about dystonia or DBS. I remain the anonymous poster and yes WE ARE THE CHOICES ME MAKE.

Posted by: careless whisper | Dec 6, 2007 12:15:08 AM

To the Anonymous Poster -

Reading your response indicates to me either you are not a nurse or one without an ounce of compassion. The East Coast is not the only area that serves "critically ill patients "- The Midwest, The South, The West Coast, The Northwest all do, which leads me to suspect that you actually are a unidentified ICU nurse. Dystonia is very much a disability. My blogs do not deny that ADA fact. I would suggest that you learn about DBS- your response about not desiring to know about this implantable device- is certainly misplaced as these devices are going to increase in use for the treatment of many disorders in many patients- some of whom may become your future critically ill patients on the East Coast. And you will be a disadvantage in providing care to these patients and their associated illnesses. Nor would I want someone representing your stated comments providing care to those with DBS, or other devices. Let us become supersaturated with knowledge. Society demands it today.

WE ARE THE CHOICES WE MAKE.

Posted by: beka | Oct 31, 2007 11:10:36 AM

I know nothing of Dystonia nor DBS and I do not want to know what it is. Is it a disability? Your blogs says no it is not. Therefore, why should you be treated differently? We are already super saturated with things to learn about our patients and our patient population who are the most critically ill in the East Coast. If you are a patient, then say so, so we can treat you as such. If you say you are a critical care nurse, why don't you act like one, be one and quit complaining about the job situation. Life is full of choices and the choices we make make makes the difference in our lives.

Posted by: | Oct 27, 2007 7:03:50 PM

I'm very sorry to hear of your scheduling situation. I understand what it is like to have a chronic disease that no one understands along with the frustration and energy it draws out of us. Not having that "safety net" of co-workers who understand your dystonia and a work environment you know will not exacerbate your symptoms is very frustrating. I'm hoping that nursing administrators will take into consideration your specific situation and allow you to continue your current schedule, to avoid having to mess with your current DBS program. Good Luck!

Posted by: Kristin | Oct 19, 2007 3:03:17 AM

Beka,

So sorry, to read about your latest setback. Have no clue what to say, but still I'm here for you.

Thank you.

Posted by: Jessica A Bruno | Oct 15, 2007 5:18:00 PM

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