Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.

Long Term Disability

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.