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.

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5 thoughts on “Dysautonomia and Disability- Social Security and Medicare

  1. Holy heck, that was perfect!

    But no! No…no! You should have somehow PLANNED better for this illness…saved enough money to last 50 years, made better investments.

    If you really WANTED to work, you could.

    I would LOVE for those types of people to deal with a chronic illness for just one day. I’ll bet they’d be brought to their knees.

    • Those who don’t live it don’t ‘get it’…. 😦 I just got a baked potato out of the oven, and put some basic toppings on it- salt, pepper, butter, some sour cream (lite), and some dried chives- nothing I had to prepare…. and I hurt. There aren’t any ‘tunnel vision’ or dimmed hearing going on…yet. But I’ve reached my max for a while. Over a stupid potato ! I used to run non-stop as an RN for 12 hour shifts, and be OK when I got done. Now, dragging water in from the car tears me up for an entire day. :/

      • I know what you’re saying! Last spring, I was training for a 5k. Tonight? I walked into the kitchen, got my dog a treat, and pulled on her toy with her for about 10 seconds. I was rewarded with some lovely tachycardia and shortness or breath. No….no…just laziness 😉

  2. My husband used to be active and athletic, then he was hurt at work and had to have surgery. After his surgery he was not getting over his pain. Numerous tests and Dr visits later, he was diagnosed with CRPS . I have watched this happy active man become bitter and unhappy. He feels like less of a man no matter what I say. He fought for Disability for 6 years ( he was 44 when he was diagnosed) after he received it they are now saying that when they gave him his back pay, they overpaid him. Life is complicated and sometimes it sucks but we do what we do because it is what it is.

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