When I got back to my hometown, I was thrilled when I got the job that I actually went to nursing school to do. I was going to be a full-time pediatric nurse. I had taken care of kids in various other settings, but never on a pediatric floor. I’d also be floating to the Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) after orientation. I couldn’t wait. The autonomic episodes had been much less frequent in the months before I moved back to the Midwest, and I was very encouraged. I started that pediatric job absolutely recharged.
I really enjoyed the experience on peds. I wasn’t prepared for the abuse cases, or some of the really serious limb and congenital deformities, but I was eager to learn. I wasn’t prepared for the temperature of the hallways on the floor. The other nurses kept the temp at about 76-78 degrees. In patient rooms, it was always expected that temperatures varied according to the patient’s comfort. Hallways were generally kept cooler. Not with that bunch. I asked if I could keep the report room cooler so I could tolerate it, and the vast majority of the nurses agreed. The night shift was really a nice group of nurses, until….
…one young, catty nurse (that needed 3-4 tries to pass boards) refused to allow me any space that was tolerable. I’d already been having more episodes, even at work, and it was a major issue. I’d been sent to the ER several times during my shifts, which was a burden on everyone I worked with, since they’d have to pick up my patients mid-shift. I hated that, and was trying to stay well enough to work by having one corner of the floor where I could have the temperatures cooler. Had I been as vindictive as that one nurse, I could have thrown the Americans With Disabilities Act in her face, and gotten some space that I could tolerate and keep functioning- that was a reasonable request. There were issues with hours being cut in the summer because of low census, and that became a deal breaker. I was also becoming terrified of dropping a baby if I began to feel shaky. I would do all care by keeping the baby in the crib- I’d put my arms around them, but their body never left the mattress. I never told anybody. I needed to go.
I got a job at a nursing home, where most (if not all) of the direct care was done by the CNAs. The chances of me dropping anybody were next to nil. I would help transfer people or reposition them, but I was never primarily responsible for the direct care. The ambient temperature in the facility was warm, but better. I went a few weeks without any episodes. And then it happened, towards the end of a shift. My blood pressure sky-rocketed, and then I started passing out. They were already getting ready to put me in a desk job doing the patient assessments that were similar to the ones I’d done in Texas at a couple of facilities.
I started the desk job, and could keep my office cool enough with a fan to be doable. Then the seasons changed, and the heat was on in the building. I started having trouble again, as well as considerable pain. Both of my primary triggers were kicking in, and I started having a lot of the episodes. Eventually, my boss had to start sending me to the hospital via EMS for liability issues (which I hated). There was also some weird rift between the office staff and the administrative nursing staff (that I was part of), and ‘hiding me’ became a problem. In the last six weeks I worked, I was sent to the ER via ambulance about 12 times or so. I don’t remember any of the rides. I do remember waking up in the ER often enough that it became common enough not to scare me. One time I had pyelonephritis and sepsis, which triggered me passing out in my boss’s office- so that’s not technically the dysautonomia. But the rest of the trips were because I was cyanotic, blotchy, and/or cold and pale- and at best, semi-conscious. There were times my boss thought I was dead. My coworkers would either see me starting to fade, hear me fall, or find me- out cold. It wasn’t going to work. I had become unemployable.
The seizures were also an issue, as they were more likely to happen when I was in the earliest stages of sleep (regardless of cause), as was discovered on a 5-day video EEG done later on. It made some things make more sense. Sleep seizures sound relatively harmless, and since mine are located in my temporal lobe, they aren’t as taxing on the brain- but, I wake up groggy and with headaches that are pretty intense. I’m shot for the day after those. I also have chewed up inner cheeks and/or the side of my tongue with the seizures. My coworkers did see seizures, and described them to me; I don’t remember much of what they said. There was some left-sided shaking, but not the whole body jerking that people see on TV.
Finally, the day came when my boss said I needed to go on disability. April 2004. She was very nice about it all, though I later became frustrated by corporate ‘legal requirements’ about me returning to work (I think they tried to make it impossible for me to return, and hoped I wouldn’t try). I met the requirements, and tried to return about seven months after leaving. I didn’t last long- maybe 6-8 weeks. I couldn’t do it. I honestly tried during that 6-8 weeks, but I was constantly in agonizing muscle pain, and the temperatures weren’t good. I’d make it through my partial shifts (but go home and fall apart), but then I started full 8-hour shifts. The pain and heat triggers were too intense, and I was off for good. I was devastated. The last day I was there was actually to pick up my paycheck, when I started having one of the episodes. I refused to go to the ER even after EMS was called. My blood pressure was very high (as it sometimes did with the dysautonomia, before dropping). Police drove me home since they wouldn’t let me stay in my own car (it was about 15 degrees below zero wind chill). January 2005- the last time I ever worked as a RN.
My life as I knew it was over. I felt completely useless, and my coworkers acted like I never existed (as was the M.O. of how we had been instructed to treat former employees at that facility; it was weird). When I was initially off, I had been told that some of the floor staff were asking about me, and to not talk to them on the phone if they called me at home- at my own home, on my own phone, on my own time. I saw one former coworker in the grocery store one day, and as soon as she saw that I saw her, she took off, without even acknowledging I was there. I know she saw me. All I did was get too sick to work. Yet I was treated as if I were some enemy of the facility. It was a nice place, and I liked my job. But that was weird. Or maybe just ‘Yankees’… I’d been used to people in Texas, where that wasn’t ‘normal’ by a long shot. At one nursing home, one of the nurses had to take an extended leave because of cancer, and the entire facility collected food for her family for Christmas, and toys for her kids… that’s just how it was done there.
Later I was told I screwed things up on the assessments- I had been doing the same essential job I’d done where the corporate consultant called me herself to ask me not to resign. It didn’t make sense. All I could think of was the times I’d returned to work at 3:00 a.m. to complete assessments on time, and maybe being so exhausted I made mistakes. But screwing things up wasn’t something I was known for. That hurt even worse. I could deal with the ice cold shoulders- but negative comments about the quality of my work that made no sense to me was really hard. Integrity is really important to me. Having that trashed was extremely difficult- and I was never shown proof. I don’t know how much was actually true, and how much was manufactured, since being told not to talk to anybody. I was still in the early stages of getting on disability from insurance from this employer…I felt intimidated. It may have been what was told to the other staff to explain why I was gone… I’ll never know. And I wouldn’t trust anything they told me now anyway. I wonder why the two other people I saw ‘removed’ actually left.
Not being employable was (and still is) extremely hard. My identity as a nurse is essentially gone. I have had more physical problems since going on disability. I had a knee replaced, tore the other ACL and meniscus but couldn’t get them fixed because of other medical problems, had multiple pulmonary emboli (acute, subacute, and chronic in all lobes of my right lung), heart catheterization, 4 years of Coumadin, leukemia, worsening diabetes with multiple insulin shots/day, major issues with medication interactions, horrendous things happened repeatedly at one ER , etc. My pain level has gotten worse, and the headaches now are bad enough that narcotics are ineffective after an hour or so- so I live with them.
I have to wear a vest with 4 ice inserts year round if I go out to the store, or to someone’s home for as little as 15 minutes. I can’t walk without some sort of support except for the short distances in my apartment. If I don’t have something in my monthly budget ahead of time, it isn’t possible. There were no friends to have dinner with, and no place I can go without my ice vest (and I’m thankful I’ve got that, or I wouldn’t be able to spend any time at all with family at Christmas; I can’t eat hot food in a hot room even with the ice vest- but being able to visit with them after dinner is a blessing). I do have a childhood friend with whom I’ve reconnected, and we’re hoping to get together soon. With the ice vest.
What can YOU learn from this?
–Always get short term and longterm disability insurance whenever you can. If you don’t have it, and end up needing it, you can plan on having to move in with whatever relative you have, and being poor for the rest of your life, but not poor enough to qualify for any extra assistance from anyone, anywhere. Be very thankful if it just becomes wasted money- but if you need it, it’s the difference between about %40 more income. Think of it as rent being covered. You may never get sick….but you never know when a drunk driver is out there.
-Don’t forget people who get sick and have to leave. Their world has been completely altered forever. Even a five minute phone call means a lot. Just being remembered at all is huge.
-Keep documents of health related issues. If nothing else, it saves time if you have to see a new doctor. If you need information for any sort of disability, you’ll have it (even if just dates and providers) to fill out the Social Security, and LTD forms. I had over 1000 pages of hospital and physician documentation, and was passed on the first application. I’d have 3-4 times that amount now.
Don’t assume you will never become disabled. I certainly never expected it when I started out as a nurse, and even when I was initially diagnosed with epilepsy, and later the dysautonomia. I thought I could fight through whatever happened…eventually a body gives out. Nobody knows when, who, or why. Be prepared as much as you can be.