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.

Advertisements

Do I Really Belong Anywhere?

When I look at the vast number of ways people can be divisive, I feel even more like I don’t belong anywhere.  Whether it’s political, religious, or anything else, I don’t tow the party line anywhere.  I don’t believe in any extremes.  I hate labels.  I sometimes don’t know exactly where I stand on things, but if it in some way makes people more distant from each other, there’s a really good chance I don’t want any part of it.  The only thing I’m definite about is my relationship with God- not how others view their own Christianity, but MY relationship with God/Jesus/The Holy Spirit… and those don’t need to be flashy and highly viewable.  I shouldn’t have to advertise it; and I shouldn’t have to hide it.

Because of my ‘religious’ beliefs (I detest the word ‘religious’- it screams of empty rituals and mindless devotion), I don’t like when people are labelled and judged by humans. I don’t believe we have the right to do that to other people. We’re human, a.k.a. fallible, and need to focus on our own shortcomings instead of being hateful  (Yes !  Christians are some of the most hateful people on the planet for those Christians who haven’t figured that out!). Check out Matthew 5 & 6… great chapters in the Bible.  Do I have specific feelings about specific issues? Yep.  But I don’t think many of those things need to be put up for public approval. Some things are between the person and God.  And, most really aren’t worth making illegal to clog up an already stagnant legal system even more. We need to keep the violent people contained…not someone who had an abortion after being raped, or something else that is seen as a violation against life and God.  When Christians use God to back up their own beliefs, it makes me sad. God can speak for Himself- and He has.  He told US to love each other, and to leave the judgement to Him.  

That doesn’t mean I don’t have my own beliefs and views on things. I do. But I just can’t stand the fighting about issues that are really very personal.   How does any Christian think that people who don’t have a relationship with God are ever going to see the benefit of knowing Him if Christians spend so much time belittling those they disagree with?  Is it not possible to have a personal (and deeply valued) belief system and relationship with God, and still reach out with an open hand to someone who thinks and believes differently?  Does being a Christian mean avoiding everybody who doesn’t show up at church 3-5 times a week?  That old ‘go ye into ALL the world….’ ?  I guess that was only for the olden days, eh? Seems that folks only want to be with like-minded folks, which is fine, until it becomes exclusive.

When I hear the far right talk about the ‘free’ entitlements such as Medicare, it makes me so sad.  Because of things outside of my control, I’m disabled, and on Medicare (and have been since I was 44 years old).  I worked as an RN for 20 years, and paid into Medicare and Social Security.  That ‘free’ Medicare costs me about $500+ per MONTH, to pay for premiums/co-pays so that I do have full coverage and the medications/supplies I need. Medicare is very deficient in many areas.  Medicaid is extremely difficult to qualify for; it’s not something that a person just goes and gets in line to receive.  It’s portrayed as the medical care that anybody can get if they don’t have something else, and that is absolutely not true.  For me to qualify for Medicaid help (during the times when I had a different Medicare supplement policy that left me with thousands of dollars in copays), I had a $2200/MONTH ‘deductible’ (called a spend-down).  That didn’t even leave enough for rent, let alone premiums, food, utilities, medications, etc.  I agree that there have to be requirements to be met in order to qualify…but I also know that those who find Medicare and Medicaid to be such ‘freebies’ just don’t understand.  It costs me $6000/year for the privilege of having ‘free’ medical care.  I don’t belong on that part of the  ‘right’.

When I hear the far left speak of ‘conservatives’ as people who generally hate most of the planet, it saddens me.  Many of my beliefs are conservative (stiflingly so to some), and yet I have met so many people from so many backgrounds and belief systems that I want to be inclusive.  Excluding people (who are not dangerous to themselves or others) from any part of society damages the whole of society.  When I look at the general decline of behavior as a whole since the ‘Leave It To Beaver’ days, I see that a dose of conservativeness isn’t a bad thing !  There is room for so much more than the black and white thinking that predominates every ‘side’ of any issue.  I don’t belong with the ‘left’ either.

I’ve been rethinking a lot of my personal views on a lot of things.  For the most part, that means that the people I grew up with probably see me as being wayward at best, and a heretic at worst.  I don’t fit anywhere.  I just don’t think that I know enough as a human to judge many of the ‘hot topic’ issues.  And I’m not afraid to admit it.  Yes, I believe the Bible.  But I also know that there are things that are known now that weren’t known in Biblical times, and changes in social and scientific ‘norms’ that cause me to step back from judgement and wait until the day I can ask God for myself, instead of categorizing  groups of humans, or specific activities- and in the meantime, try not to cause more divisiveness.  In the end, the nitpicking isn’t going to help anyone.  What is in my heart is what matters- and I’m OK knowing that God sees that better than anyone.

I’ve discussed my views on homosexuality with people who know me from the church I grew up in, and  with those who have no specific religious views, and it’s not surprising which group verbally beat me up for my beliefs.   I believe that being gay is biological. There. I said it. I don’t think it’s a choice. Or a ‘lifestyle’, like being a jet-setter or redneck, or something.  I’ve also talked before about the kids I saw when I was working as a pediatric RN, who had ‘ambiguous genitalia’ (that is a diagnosis based on biology)… those kids literally had either both male and female sex organs (internal and/or external) , or the only way to determine their gender was by sending their blood for genetic mapping.  Gender is determined by the X-Y chromosomes from the sperm, and are affected by the mom’s hormones while she is pregnant. If the mom is carrying a genetically determined baby girl, and for some reason has some surge of testosterone during the pregnancy at just the right time, why is it so hard to understand that the baby is affected?  If the baby can end up with externally visible gender ambiguity , why is it so hard to think that there can be biological changes in the brain that determine sexual orientation?  Regardless, I don’t know enough to judge someone. I’ve had many gay and lesbian co-workers, one transgender co-worker who was in the process of reassignment, and assorted friends and relatives who are gay or lesbian.  God loves them.  I love them.  SO, I don’t fit in anywhere.

Criticizing the President… Oy.  I shared some very anti-Obama things on FaceBook during the campaign, and I regret it.  I don’t trust Chicago politicians. Period. But he was/is our POTUS.  The office deserves respect, and once again, judgement isn’t my role. The entire political atmosphere scares me, but instead of being so negative, I need to wake up and do more praying than criticizing.  It’s never just about the man in the Office… no one person is responsible for the mess (or success) of a country. It’s not fair to bash our country’s leader, especially in the worldwide social media society we live in.  I also cringe when such stupid things are criticized, such as the sleeve length of Mrs. Obama’s dresses…. seriously?  Does it matter?  When every last thing is torn apart (instead of trying to see the positive), what good comes of it?  Constant criticism just becomes background noise, and nothing said by those who continue to tear things down is heard.  From then on, their credibility is going to be questioned by me (I tend to verify most of what I read online anyway 😀 ).   I don’t trust anyone in Washington, D.C., and the media is always suspect… I want the source, and their interest in the topic.

Another hot topic issue that I do have some personal opinions about is abortion. Specifically, post-rape abortion was  in the press this last year, and some really ignorant politicians made some incredibly stupid remarks. The body doesn’t ‘shut down’ and prevent pregnancy after ‘legitimate’  rape (is there an ilegimate rape?).  If a woman is ovulating when she is raped, she can very easily become pregnant.  I’ve been there.  I had an agonizing decision to make, and I found out very painfully why women consider abortion. I get it.  I couldn’t do it.  And I couldn’t talk to anybody about it.  I was told I was just stressed out because of the rape, and few people would even talk to me about the pregnancy.  I was blessed to have miscarried, though I feel horrible for those who miscarry that are wanting a baby. For me, it was the best outcome for a traumatized 23-year old brain. I’ll never forget that morning- both the horror…and the relief.

Adoption isn’t always the ‘perfect’ answer, either. I was adopted, and I have had positive experiences with my adoptive and biological families.  But I couldn’t give a baby away- and how could I raise a child of rape without prejudice?  How could I tell a baby it was conceived in violence with someone who terrorized me, and have that child ever believe his/her existence was a good thing?  Even if I truly did the best I could to be loving (and with my love for babies and kids, I probably would have done OK, but the whole thing was terrifying).  As an adopted child- who was always told that my being placed for adoption was a wonderful thing for my adoptive parents- I understand that underlying feeling of being a ‘mistake’, even in the best of circumstances.  I later found out that I was conceived with an abundance of love, which meant a lot to me. But growing up, especially as I entered and went through adolescence, I did feel like a fluke.  Being the product of a rape can never be something that can be smoothed over with later information should I have met the child (if I’d carried it to term and relinquished it), or managed to raise it with some degree of actual love and affection.  I don’t ever think abortion is an acceptable form of birth control; there are responsible ways to address pregnancy prevention.  But I ‘get it’ when someone is raped and just can’t emotionally deal with a pregnancy.  I don’t like it. I don’t support it. But I get it.  Once again, I don’t fit with so many that I grew up with.

The ‘morning after pill’… it does NOT terminate a pregnancy. It prevents implantation. Without implantation, even a fertilized egg will not result in a pregnancy. It’s simple biology.  The ‘morning after pill’ is not the same as abortion.  There are pills that do terminate pregnancies.  It is good to know the difference.

The more things there are to divide people, the more I don’t fit anywhere.  I can see many sides of an issue, and I don’t understand why others can’t do the same. Am I just stupid?  I’ve  generally graduated with honors, and done very well when I worked as an RN. Am I naive? Maybe.  Do I just want to feel like it’s OK to not hate one side or the other in order to ‘belong’? Absolutely.  That’s really all I want.  And to not be belittled for wanting that.   I’m glad that humans aren’t my Ultimate Judge.

Can This Country Ever Come Together?

And I’m not necessarily talking about who wins the election in 2 days- though that ‘s a big part of it, but it’s way beyond that.  Everywhere I turn, there is such hate and divisiveness.  It’s so far beyond disagreement with any sort of mutual respect.  It’s bitter, hostile, and wishing the other ‘side’ ill will, or making personal attacks that go beyond disagreeing with views and beliefs.  And, it has no limits demographically. But recently, it does come through in the political hate each side seems to have for the other side.  Have people forgotten that there are decent human beings who happen to disagree?  Sure, there are politically based people in the public that I really don’t like (from both sides- extremism is very unpalatable no matter who does it).  There are many I wouldn’t want to be in the same room with. But I don’t wish anything dreadful on them.

In reading some of the comments on news stories, or even on YouTube for something totally unrelated to politics, the venomous comments are horrifying.  The topic can be a song, a video on some personal tragedy, or whatever. There is hate everywhere. Social media has made this so easy.  It’s the chickenshit way to spew contempt without having to actually come face to face with the person or ideas they abhor.  And there is no indication that there is any value for the person who may disagree.  It’s sad.  Pathetic. Terrifying.  There are comments about the person not deserving to live, that anybody associated with them isn’t worth taking up space on the planet, etc.  Over a disagreement in beliefs.  Says a lot about the desirability of being part of either side when personal attacks are acceptable.  I want nothing to do with either ‘side’.

We have people in this country who shoot a theater full of Batman movie goers ‘just because’ (and yes, I realize that mental illness was behind that to some degree- yet it was also well planned, so some measure of clear thinking was involved).  I’m grateful that the current candidates haven’t been harmed in a society that can produce Columbine, the Batman Massacre , killing of Amish school students, etc.  I pray for whoever wins the election.  Nobody deserves to be mowed down.  And in this society, I can see it happening very easily.  Some idiot will become a ‘martyr’… and some will be delighted, though without daring to say it at that point. Then it would be wrong- but to be so hateful otherwise?  It’s become a sport.

I cleared out many political ‘shares’ on my FaceBook page this morning.  These are from people I know.  I wish I didn’t know a thing about their political views (from either side) because most of it is followed with some type of disdain or hatred.  Republican, democrat, ‘other’, or independent.  It doesn’t matter. Politics has come to be equated with hate and division.  There are so few civilized discussions, and personally, I don’t want to know what my FRIENDS think about politics.  I’ve shared some things, and have tried to be selective, but I now feel that it’s just perpetuating what I loathe.  I was wrong to send anything political to anybody. I apologize.

No matter who wins the election, the media and social media will continue to provide an outlet for those who are bitter and hateful.  None of that solves anything. We all know that politicians just want to be right for the sake of being right- for votes- not to do anything productive. And those who campaign can’t really fulfill anything they promise since they’re not the final step in decision making- unless it’s to veto something, or their buddies are in control of the House of Representatives and Senate.  Congress seems to be a cesspool of hatred.  A microcosm of the country at large.

I’ve had a relative (a.k.a. family member) describe me in bitterly hateful terms because I asked to not receive anymore e-mail propaganda from her (and I never sent her anything from ‘my side’). She hadn’t returned e-mails (about ‘hey, how are you?’) or had anything to do with me for over 20 years.  Yet she decided she knows that I’m a hate monger?  No.  That relationship is over.  It’s one thing to disagree. It’s something else (and a deal breaker) to make it a personal attack.  And yet, that’s all I see from so many people- including Christians, who ‘talk’ about not being judgemental, but can’t seem to shut up with their judgements about those they disagree with.  Those who don’t care about God, but claim to want everyone to get along, are just as guilty.  If people can’t be civilized I really don’t care to know them.  Disagreeing is one thing, when it’s done with respect that both sides feel passionately about their beliefs.  But when any side demands respect and refuses to give it, they’re all hypocrites.

There are a good number of ‘friends’ who I wouldn’t have anything to do with if I knew them for purely political reasons.  There are some family members that I’m stuck with until they cross the line and get personal with their attacks.  And yet mostly what I see are hateful posts that cause me to wonder if the sender thinks the horrible things about me because I don’t agree with their views about someone they don’t know as a human being.  Public figures are not humanized. They have become objects.  And social media has made categorizing and objectifying people the way to interact.

Eight years of Bush-hate has become four years of Obama-hate (or Obama worship- depending on the ‘side’).  No matter who wins this election on Tuesday, there will be more hate.  And it does cross over into relationships.  Even if I agree with most of what my friends believe, I don’t want to see their hatred.  Maybe some folks need to unfriend me.  If hatred over someone they don’t know is that important, that’s probably a good thing to just get rid of me.  I’ll understand.  I don’t agree completely with EITHER candidate or ‘side’.  I don’t identify with any party.  Sadly, it’s become picking the less of two evils.  I’m embarrassed by many of the conservative pundits.  And I dislike many of the far-left personalities.  Extremism isn’t appealing no matter where it comes from.

So, I wait for Tuesday to be over with. Just get it done.  The tone for the next four years will be set in a heartbeat.  Obama wins, and the right hates; Romney wins, and the left hates.  There is no middle ground anymore (at least what is made public- maybe there are some who stay quiet that can be more discreet and humane).  Regardless, our country is ruined. Until there can be some sort of cooperation and removing the person’s ideas from their value as a human being, we’re going to continue to fail.  If we can’t pay for our debt, we’re going to be like Greece (who had a major corporation refuse to send a cancer drug to them this week; google ‘Merck and Greece’).  If we don’t take care of our own, we’ll have people needlessly dying and/or homeless- generally through no fault of their own.  And these seem to be the only two options….no middle ground that can be agreed upon.  So we’ll fail. We’re already dropping in health and education categories with other countries.

While I still think that this is the best place to live, it is a horrible place to exist among so much hate.  So, the 25+ countries that read this blog- this is my view. I still love my country…but less and less the people who make their opinions known in hateful ways.  For now, it’s worse from those on the right…. but if Romney wins (as it was in the years with Bush), the left will spew their venom.  And in the end, it does nothing to fix anything.