As a registered nurse, I saw people on a routine basis who had life-altering events happen to them. They were my job. Many who were of working age were permanently and/or catastrophically injured. Others had injuries that eliminated them from eligibility to pursue their desired careers. I saw bad stuff. Because of that, I always insured myself to the max when I began a new job and was in the process of selecting benefits. I never imagined that my life would become what it has, but the decision to get long term disability insurance has been extremely worth the premiums I paid when I was working. If I hadn’t purchased LTD, I’d be in a way different situation than I’m in now. My monthly income is approximately 2/3 of what it was when I was working. Without LTD, it would be less than half.
I wasn’t eligible for short term disability, or I would have bought that also. I had to cash in a 403B to make it the 3 months until LTD kicked in. Even with that, I had some help with a couple of months’ rent. Diabetes was the problem with getting STD, which had nothing to do with why I ended up on disability. Now, with the healthcare reforms, I’m not sure if disability insurance falls under the mandatory acceptance of pre-existing illnesses, or if that is just for medical insurance. I always tell people to get whatever insurance they can; nobody knows what can happen.
When I was first having problems with dysautonomia, I had some major issues with staying employed. I managed to do so, but it wasn’t easy. Many times, I would either lose consciousness, or my blood pressure and heart rate would become so abnormal (either too high or too low) that I’d become unable to function properly. The job I was at when the dysautonomia first surfaced was at a drug and alcohol rehab facility. I was the only RN on campus when I worked, so being conscious was required… 😮 I often had gait problems (couldn’t walk straight), and my speech and reaction times were altered. I looked like I belonged with the treatment side of things- not the help.
My boss at the time wasn’t a great communicator, but was very fond of ‘contracts’ as if the diagnosis was somehow amenable to behavior modification (medical nursing wasn’t his forte). That irked me to no end, but I really liked the job and my co-workers. I fought like crazy to stay employed, and fortunately had a wonderful neurologist in that small town. She was familiar with dysautonomia (most people haven’t heard of it, including doctors in ERs or general practice), and knew which medications to try after the electrophysiologist confirmed that my tilt table test was positive (my blood pressure dropped to 44/16). My neurologist started me on Neurontin after atenolol, Norpace CR, Depakote, and propranolol alone hadn’t helped, OR had made things worse. It was a nightmare of trying new meds, only to have a week or two when things seemed different (in a good way), and then headed south.
Neurontin bought me eight more years of being employable. That was huge. I did end up leaving that drug and alcohol rehab facility, but it wasn’t because of my medical issues. There were major safety issues with the detox unit at the time, and I wasn’t willing to keep waiting for disaster to happen. It was too stressful, and that didn’t help my blood pressure or heart rate. I was lucky to be an RN in a town that often hired RNs from out of the country to fill in the gaps; I got another job in about 45 minutes from application to the phone call offering me the position at a nice nursing home.
When I worked at that nursing home in the small town in the Texas Hill Country, I found that the administrator and director of nurses were willing to work with me, and saw what I had to offer- not just my ‘bad days’. I was loaned a cushioned mattress overlay to keep in my office, so when I felt bad I could safely lie down and sleep it off (off the clock), and then get up and resume my work when I was doing better. (I did MDS assessments for Medicare patients- desk jockey). By the time I worked in the general hospital in the same town (where I’d worked before, and knew who I was working with), the Neurontin had really helped to stablize my condition well enough to work 3 12-hour shifts on weekend nights on the general surgical floor. It went well; I was encouraged.
About six years into that eight years of employability, I moved back to the Midwest where I’d grown up. I started on a pediatric floor, but it wasn’t long after starting that job when the symptoms became a major problem. The first time happened when I was in my car on my way to a shift, and my heart rate was in the 140s, which meant that I had little time before it nosedived, and I’d pass out. I knew that I’d have to pull over if my vision started to ‘tunnel’ and my hearing began to dim. I talked to myself, “you’re going to be ok”, “you’re almost there”, etc. I was almost to the hospital, and managed to make it to the floor where I worked, and get help from my co-workers. They could tell immediately that something wasn’t right. I was still conscious when they took me to the ER, but I don’t remember much of what happened.
I turn blue during these episodes, and then become cold and clammy, but my face becomes extremely red (almost a bluish-red) and very hot. At some point, I fall into a deep sleep, and become white; I’ve been told I ‘look dead’ several times. I was back in contact with neurologists and cardiologists, and one month long monitor showed that I was having PVCs (that I could feel), which required medication adjustment. It seemed to help, but I still wasn’t doing well. Initially the cardiologist poo-poo’d my reports that I felt something. Then she saw the monitor report.
I was working with sick babies and children. Some of these babies were four pound preemies that were moved from the NICU because of a boom down there (had three sets of triplets born one week, so they were going nuts in the NICU). These kids needed constant monitoring, and I was feeling less stable even picking them up. It didn’t help that the temperature in the halls was kept over 76 degrees, and one nurse refused to agree to me having one area (out of the way as needed) where I could lower the thermostat; that was a huge problem as heat intensifies the symptoms. I could have raised a stink with the Americans With Disabilities Act, but even at home in a controlled environment I wasn’t well. There were many nights when I didn’t make it through the shift, and was either taken to the ER in a wheelchair, or sent to lie down until I could drive home. I needed to leave.
I went to work at another nice nursing home; I figured that pushing a med cart, and having little direct care (and risk of dropping someone) was a better option. I was soon put into another desk job (doing MDSs) because I’d done them before. I did well enough to pass muster for a while, but again began having the episodes where I’d change colors, and eventually pass out, or fall into a deep sleep for hours. Some of what was going on was epilepsy (something I’d had for decades by then, and has been diagnosed as temporal lobe epilepsy). There were times when the symptoms seemed to overlap. All I knew was that I was deteriorating. Towards the ‘end’, I was being sent out by ambulance after someone heard me hit the floor, saw me pass out, or heard the ‘thud’ in my office. I don’t remember any of the actual ambulance ‘rides’. I was sent out 10-12 times over a 2 month period. I usually came around sometime after getting to the ER. My boss told me it was time to tell my doctor about the need for disability (and she helped with whatever information my doctor needed, and I’d consented for the information to be exchanged). Human resources got me the forms for LTD- which wouldn’t go into effect for 90 days.
I was horrified not to be working. Nurses don’t just stop being nurses. In my opinion, it’s a lifetime frame of mind. I still look at people’s veins on their hands when I’m in the line at the grocery store, and size up the ease of IV insertion. I still AM a registered nurse; I do my CEUs and renew my license every 2 years. But I’ll never work again. So much more has happened since going on disability that has eliminated my chances to work again. I tried to go back after about 7 months, but I couldn’t do it. That saddens me every day. I’d figured I’d be clunking up and down the halls of some healthcare facility until I was at least 62 years old. I didn’t make it to my 40th birthday. But I’m very thankful that I’ve been able to remain in my apartment in a decent part of town. Without LTD that wouldn’t be possible. I have a lot of premiums to pay because I’m now on Medicare (about $100 for ‘Part B’, $225 for the supplement to pay what Medicare doesn’t, and $70 for the ‘Part D’ prescription drug plan- and any co-pays). My LTD check roughly covers rent and my premiums. That is a major part of my expenses.
The point to all of this is that nobody knows what will happen to them. Whether it be illness, injury, or accidents with life-altering consequences, life is unpredictable, and we’re not guaranteed to get through it unscathed. I never saw this in my future when I started out as an idealistic 21 year old RN in 1985. But this is what it turned out to be. I’d encourage anyone who has the chance to get STD/LTD insurance (preferably both, but LTD for sure) to get it. Skip a night out once a month. That may be the difference between living in a housing project or staying in a familiar place while dealing with a ‘new normal’. Disability is structured as such that you won’t qualify for many additional assistance programs. The ‘extra’ income from an LTD policy makes an indescribable difference. Things are still tight- but I get by. I’d much rather be working, but I’m thankful that I’m not in worse shape.