I was stumbling around on Facebook, and found three of the R.N.s I worked with when I worked pediatrics, and sent ‘just saying hi’ messages. I’m not sure they’ll see them, but I hope they do. When I worked there, the dysautonomia had started getting much worse, and they were stuck with me some nights when I was having heart rate and blood pressure issues. More than once, I was hauled down to the E.R. Not good. I was more of a liability with my inconsistent ability to stay vertical. And I’m not sure anybody really understood what was going on. I know I was stunned at how bad things were getting… and it scared me. But I still thought I could work if I found something else.
Anyway, I have respect for them, and am glad I had the chance to work on a pediatric floor. I’d taken care of kids on many other types of floors I worked (neuro, head injury rehab, general med-surg) for years, but not a ‘real’ pediatric floor. I greatly value the experience I got there. I’m going to post this with a ‘public’ tag, hoping they see this if they get the messages.
When the dysautonomia first kicked in after I’d moved back from Texas, I wasn’t sure what to expect, so didn’t panic at first. I’d always been able to find some medication that helped. I had to do a 3 week heart monitor that showed PVCs. That was treated with medication, and it did help to some degree. I could still feel them, but not as often. But, I was still able to work more than not. I was starting to feel uneasy around the tinier babies… I would do all care and assessments without moving the baby off of the bed. I’d ‘cradle’ them in my arms, and do everything that needed doing, but I was afraid to move them away from the safety of the cribs.
The summer months were hard on that floor because of the decreased census (kids not in school giving each other ‘bugs’). Being single, I didn’t have a spouse to help make up the difference in pay I was losing when hours were cut (I lost a month’s hours over the summer). That was a problem. I couldn’t work overtime when I was doing all I could to work the hours I was assigned. Everybody got hours cut- and it was fair as far as that went, but I needed full-time work year round. The nurse manager contacted an adult med-surg manager who said she’d plug me into their schedule, but she never answered my phone calls. And I was getting scared. I needed to work somewhere where I wasn’t so anxious about the dysautonomia. I didn’t trust my own body…but I wasn’t ready to give up working. Being a nurse has been my identity for a long time. It was like that part of me was starting to die. But I didn’t want to give up.
I made the decision to work at a nursing home. I’d worked in several before. I wouldn’t have the fear of dropping a small baby/child when I’d get dizzy or feel the PVCs, and if I had to move someone, there was always a CNA around somewhere at the nursing home to do it together. It was more team oriented- though any one of the pediatric nurses would help when asked. I’d be pushing a medication cart around, and if needed, I could stop for a minute, bend over, and try to clear my head when the dysautonomia kicked in. While I really was thankful for the chance to work pediatrics (the reason I went to nursing school 18 years earlier), it wasn’t a good thing in many ways anymore. And, it was really hard to leave. I really liked the vast majority of people I worked with. They gave good care to the patients, which I respected. Most of the night shift nurses were ‘older’ (not 20-somethings), and I enjoyed working with nurses closer to my age. But I had to leave for many reasons.
I felt badly about the short notice they’d get when I was feeling the pre-syncopal symptoms. If I was taken to the E.R. in the middle of the shift, someone (or a couple of them) would have to take care of my patients. That wasn’t fair to them. There were huge issues with the temperature of the break room (or any designated place I could go cool down). My heat intolerance was bad, but at that time, I could still go into patient rooms and do what I needed to do, even if it was quite warm. The babies’ rooms were especially warm, which they needed; I understood that, and was able to manage. But it was nearly impossible to find somewhere that was cool enough for me to chart between assessments or meds (being in the rooms), see my lights going off, and do better getting through the shift- mostly because of one nurse who was considered the nurse manager’s ‘pet’. That one nurse in particular was very nasty about the thermostat. I didn’t care if I was in the main area- I just NEEDED somewhere that wasn’t as hot as most of them liked it (I’ve deteriorated a lot since then, and can’t leave home without cooling vests, and my thermostat is never above 68- generally cooler, and often on when the outside temp is below 40 degrees). I leave home about once or twice a month, always with the cooling vests. I could have pursued it with the ADA (Americans with Disabilities Act), but I’m not much into ‘forcing’ someone to do the right thing. If they’re that nasty, I’m not interested in working with them. There were many really great nurses to work with there, but if I couldn’t stay conscious, I was no good to them or the patients.
Since then, I worked about 8 months at the nursing home before I was essentially forced to go on disability. I was passing out ‘hard’, and hauled off by ambulance at least 10 times in the last 2 months I was there. I don’t remember any of the ambulance trips. By then, I had an office job doing care plans. I tried to go back 7 months later, but it didn’t work. My body was crashing, and the pain from the repetitive motion and shoving those 200 pound medcarts around was triggering more autonomic stuff- whether at work or at home. Nobody there would acknowledge I existed after I had to leave. One went out of her way to avoid me at the grocery store. I’d gotten sick- I wasn’t some sort of criminal !!
Since being on disability, I’ve deteriorated even more, and had some more challenges come up. I’ve had leukemia (acute myelocytic, subtype M-3, or APL) with 19 months of near daily chemo of some sort- that blew me up like a toad (face/chin is still not right after a nasty cellulitis and ear infection during the worst of the leukemia), I lost my hair twice, and my eyebrows never did come back in right. But a local news anchor died within 2 days of diagnosis from the same thing, so I’m fortunate. I’ve got degenerative disc disease in most of my spine, so chronic pain. I had a knee replacement. I had multiple pulmonary emboli, and spent a lot of time hospitalized getting that straightened out, or for complications from them or the warfarin. I had testing to see if part of my brain could be removed- come to find out I need all of it :p Chronic pain and headaches are just daily life. Chemo makes autonomic stuff worse; my legs are atrophying, so I am ‘working’ my thighs as much as I can to maintain the strength there.
But I’m fortunate. I’ve had great experiences as an R.N. I miss it daily. I’ve been of some use to some family and friends when they’ve been going through their own medical disasters. But, I had really hoped that I’d work on that pediatric floor for a long time. It was my dream job when I was in nursing school. I really enjoyed most of the people I worked with. I respected them and the care they gave those kids. I liked the patients (the abuse cases were hard to handle emotionally; they angered me), and learned a lot.
I’m also still able to live on my own. There are times when I wonder how long that will last, but I’m doing what I can to make sure I can live here in my own space for as many years as possible. I have a ‘new’ dog; she’s 18 months old now, and nuts, but a lot of company. I got her when she was 9 weeks old. My dad is still healthy and a big part of my life. I have two friends from when I grew up here. One has helped me a lot with straightening out my apartment after being packed 4 times to return to Texas… every time I packed, something else would go on medically; I’m no longer able to travel very far. The TSA has issues with my cooling vests (they turn into liquid), and I can’t be ‘contained’ in something with no room to get up and move around. But, I have adjusted how I do things (order many items online, get Schwan’s food delivered, shop in the middle of the night when it’s cooler, and there are fewer people getting huffy because I don’t move as fast as they do, etc.). There are ways to get most things done.
SO, if any of those nurses I worked with see this, thank you for being part of the good things I remember when I worked with you. I may have only been there for eight months, but you left good impressions, and it was long enough to respect you. I wish you all well. I didn’t know how to handle what had started getting bad, and I’m SO sorry for the inconvenience I was for you, as well as the times I sort of spooked some of the nurses I worked with when I’d hit the floor. But mostly, thanks for the good parts 🙂