Category Archives: Ehlers-Danlos syndrome

Live large on Social Security Disability

I, for one, am completely fed up with the news stories that say you can “live large” on Social Security Disability (SSD). These reports claim you can make more money in a year in ‘free social service benefits’ than most people make working good paying full time jobs. I’m also fed up with reports like this one from 2013 in Forbes called “Fraud and Disability” that basically says everyone on SSD is committing fraud, draining the federal bank account, and is being a parasite on the country as a whole.  This article is written purely to place the blame on all the disabled, not the ones that actually commit fraud.

Medicare isn’t free, it is automatically deducted from SSD payments each month AND if you are married to someone that still works a decent paying job, YOU have to pay taxes on your own SSD benefits. Yes, I know for a fact this is true, I have to pay them every year. Not every disabled person is just out to game the system. And I can tell you from personal experience, you will not make it rich on Disability. You will be poor, permanently poor if you have a chronic condition like mine. One that even Social Security deems “Has No Hope of Improvement”.

Now imagine having only Social Security Disability (SSD) as an income. According to this article from Disability Secrets “How Much in Benefits?” in 2017 the average person gets $1,171 each month in SSD and automatically looses roughly $200 of that to Medicare.

Supplemental Medicare plans can currently cost anywhere from $200-$800 per month, depending on the coverage, because they are required to cover pre-existing conditions. This will go up if the Republicans and Trump remove the pre-existing conditions clause. I tried to find a graphic for this, but everyone just wants you to call for a quote. For this story we will split it at $400.

Now lets subtract co-pays for prescriptions. According to this article, the average copay for a script in 2017 is $12-$13 each. Prescription purchase price index. Assuming you have a script you have to take on a monthly basis, lets say for high blood pressure, that means you are paying $144-$156 per year, per script.

Most people that are disabled have a condition(s) that requires multiple monthly scripts for life. Lets use me for the example. I’m on the low end, according to my doctors, with only four scripts each month. One for severe nerve damage, one for a non-functioning thyroid, one for pain management, and one for controlling the symptoms caused by Traumatic Brain Injury (TBI). Using the $12, that is $48 per month, which we will use for our table.

That doesn’t include copays for doctor visits, which average $50 per visit. If you are in a Certified Pain Management Program, which you have to be to receive the pain meds, you are REQUIRED to see your PM doctor face-to-face at least once every three months. Some other conditions apply, by state, by clinic, by provider, etc. In my case, not only do I have to see my PM doctor face-to-face once every 3 months, I also have to see a therapist to be assessed on ‘if patient is showing signs of addiction or improper use of medication’.  Which she then has to report to my PM. So, there are two visits, every three months, guaranteed. My PM handles two of my medications, the PM and the nerve damage (non-narcotic) one. My neurologist handles the one for TBI and I have to check in with her twice a year, so there are two more guaranteed visits. My Primary Care doctor (PC) handles the non-functioning thyroid medication, I have to see him at least once a year for that. That is a MINIMUM of ELEVEN visits a year, required. At $50 per co-pay that is $550 per year. Which I have to budget for and therefore set back $46 each month to be sure I have them covered. That doesn’t even include the standard deductible and max ‘out of pocket’ expenses that Medicare and the supplemental plans require. For the sake of ease, we will leave that out for now.

You better hope like hell you don’t catch a bug or have a complication to your chronic condition that causes additional visits, procedures, surgeries, or hospital stays. All that costs extra.

So, here we go, lets do some math.

Benefit Amount
SSD Payment + $1,171
Medicare auto-decuction –  $   200
Medicare Supplemental Insurance –  $   400
Medication Co-Pays –  $     48
Budget reduction to cover office visit co-pays –  $     46
Total left    $   477

That leaves your SSD recipient with a total $477 per month with which to pay for everything else. Rent, Utilities, transportation, food, clothing, etc.

This is where you get into the territory that the Republicans love to distort.  They claim that because of this ‘low income’ you qualify for multiple additional welfare benefits. While it is true you may qualify for SOME of them, the Republicans and their talking heads on FoxNews, love to show you the max amount of benefit, for every single category, and then add them together as if you will receive all of them. It’s a really sly and underhanded way to distort the truth. Take the max amount POSSIBLE for every category POSSIBLE and report that as what you receive in benefits. It’s hogwash.

I’m here to tell you that this is NOT how it works. Most programs have and/or clauses. You can either get food assistance and utility assistance or housing assistance. Not all three. Or Housing assistance and transportation assistance (usually only for those with severe mobility issues and it still isn’t free, just reduced) but not food assistance. If you qualify for one, it automatically disqualifies you for some others. You have to pick and choose which one you most desperately need. Which is why so many disabled people live at home with aging parents or their own kids, because they can’t get housing assistance if they get food assistance, the parents/adult children are footing the housing bill. Yes, it is true they can receive some benefit for ‘taking care of’ you, it’s only off their Income Taxes and it isn’t much.

There are ways to play the system, yes. There are always going to be. You cannot make a foolproof system. There are people out there that will always look for the way to do things differently. Like hackers trying to steal your bank account info. Why do they do it? For every 1,000 they attempt, they may get 1. The answer is, they just will. Gamers are going to game, no matter what system you put in front of them. No matter how good you are at gaming, you are never going to make a very comfortable living being on Social Security Disability, with or without other forms of welfare. At best you will hit the top end of ‘poor’ on the governments index.

But that’s just my opinion.

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Video Game Analogy

When you have a chronic illness it’s like when you are playing a video game you have an ‘energy’ bar that shows you how much energy you have. 576px-Video_game_health_bar.svg

As long as you have some on the bar, you can do things. But everything uses that energy. In a game it might be moving a rock, fighting a bad guy, searching for treasure.

In life it’s getting out of bed, taking a shower, making dinner, getting from the bed to the couch, etc.

In the game, when your energy bar is empty, you can refill it by eating, or just waiting for it to recharge. Not much different from life. piq_204130_400x400

Except with chronic illness, our energy recharge ability is cut in half or even by three-fourths of a normal persons.  For a lot of us, even our ability to eat properly is severely hindered. So our recharge just doesn’t happen with a nap, a meal, or a night of sleep (if we can even get a proper one of those).

0511-0907-1220-3962_Cartoon_of_a_Woman_Asleep_at_Her_Desk_clipart_image.jpg

For a chronically ill person, when our energy bar is low or out, we generally are forced to just stop. Completely shut down, like a robot when it’s plugged in to recharge.

This can take many forms. For me, it means that pretty much every Thursday I sleep. All day and all night. I’ve hit empty on my bar and I cannot do anything until I recharge. My brain fights me every second I try to stay awake, to the point of making me pass out just trying to go to the restroom. It’s done and refusing to operate.

For me it’s Thursday because I only get the weekends with my husband. 0e17c9c95fc0f259f60492edff1b3a5f--couples-in-love-door-ideasHe works 10-12 hour days during the week, so it’s usually breakfast-dinner-go to bed. Now that the doctors won’t allow me to work, I shifted things around until I landed on a day that gave me the most waking energy time with him.

I don’t think a normal person can understand just how bloody annoying this really is. sad-stick-figure-clipart-1You have to plan around it, because you know it’s going to happen. You can’t ‘save up’ your energy either. Resting on Monday won’t stop Thursday from happening because the simple act of living eats our energy bar faster than we can replace it.

Now imagine explaining this to an employer. Before the doctors forced me to stop working, I had to take medication to stay awake during the week and would pass out on Friday night, usually not to emerge from my bed until Sunday night. Every weekend.

Imagine what that does to your relationships. Your spouse, your kids, your friends.

I can’t tell you the number of friends, family, and absolute strangers say to me “You’re so lucky to be at home all the time, so much free time to do what ever you want.” grasp-clipart-facepalm Seriously. Like my idea of a “good time doing what ever I want” is passing out just trying to make it to the bathroom. Or forced sleeping for hours on end because my body has simply had enough and shut down. Or being unable to eat for days but still fixing a full, delicious meal for my husband. While I drool and wish I could even have a bite. Just one bite.

Or having days of dread before a mandatory doctor visit because you know that just taking a shower and getting ready to go to the appointment is going to be enough to wipe you completely out. So much so, that while you are sitting in the waiting room you will most likely come home with every single virus of every single person that has been in the office that day just because your body is too tired to fake an immune system response.

fever

Just thought you’d like to know what it’s like to be a chronically ill human. It’s Friday, so I have a bit of a recharge from sleeping through yesterday. Too bad I blew it on writing this, ey?