My War

I have been wrestling my Shadow, and I lose frequently. My pain is a monster. You cannot see it. I wish you could. It has teeth that chew on my head, claws that dig into my hands and feet, and a tail that lashes my body. I look and frequently can behave like there is no battle going on. I am a veteran of this war. But sometimes I am overwhelmed. The monster has me beat. And I try to do my beat to get by, but I know I am vulnerable. I know the pain is crippling me and I'm just trying to get home.

Now if someone reproaches me while I'm losing to a monster, I can become a monster myself. Flight isn't possible, so fight kicks in. My Shadow can take over at this point. My will is so weak from the struggle, my normal, rational self slips. I don't like it. I don't want what's going to happen next to happen. But it happens anyway: I get lippy. I get loud. I curse like the sailor my parents raised me to be (nod to the U.S. Navy). I fight back. Because I have not survived this long by rolling over and giving up.

I've lost count of how many times I: "should have been in a coma," "should not have been able to be up and walking around," "should have been dead." I am a warrior. And this war does not end. This is not Post Traumatic Stress Disorder. This is Current Trauma Stress Disorder. Don't be fooled by my smile. When I'm not smiling, please give me space. Otherwise I will snap at you, and it's not pretty.

You do not know the battles I have had to fight to get what should have rightfully been mine from the beginning. Not business battles, though I've have my fair share of economic strife. Not traffic battles that people needlessly wage on the roads each day (never thinking a car is a deadly weapon, by the way). Not career battles, though I myself still long to be in that fight. I battle with my pain. I battle my nerves that fire of random sensations at random moments. I battle chronic nausea, gastropharesis, and random choking for no reason. I battle migraines that would end you, as they ended my full-time career. This war never stops.

Some days are better than others. Even the beast sleeps sometimes. But I have to take a martini-glass-full of medications each day to get even the tiniest respite. On a scale of 1 to 10, I don't count any pain below a 5. If it's only 5, it's time to take care of all the chores I've been neglecting and run errands while I can. But I have to be very careful not to wake the beast, so I cannot do too much. These days come maybe 2-3 times per month right now. With more medication, I may be able to get it up to 4, or (Heavens, please!) 5 times per week. But that's another battle I'm fighting.

I don't get to live life like most people. My invisible monster makes it difficult to explain my situation to others. I make chronic pain look awesome. And why shouldnt I take advantage of the luck I have left? Yeah, there's a downside: people don't believe I'm as sick as I say. But what's my other option? Sitting in a wheelchair when I can very well walk myself? That's lying and manipulation. I don't brook with that. I will not beg for sympathy when I don't need it. And when I do, it's only because I'm in crisis.

That's why it's not PTSD for me, it's CTSD. This is real. This is now. I'm more amazing than you know.

Political Rant: Fear Mongering

I have to speak up. The fear mongering in this country is out of control. The Paris Attacks didn't even happen on our soil, and yet we are talking about slamming the door on people in need out of fear of what might happen. We are ignoring the plight of people fleeing brutality and war in an attempt to firewall ourselves off from terrorisism, when we the terrorism in this case was HOMEGROWN. Have we forgotten Waco, Texas that quickily? Or what about Sandyhook, Connecticut? This is the same stupid fearmongering that has us more worried about the ONE addict, when ther are over 100 people suffering in chronic pain PER ADDICT. The unsubstantiated boogyman under our bed frightens us more than the very REAL problem of suffering we see every day. We do nothing sensible about the real problems, and we lose our head over spooky possibilities. And it's destroying this country.

Most people get behind the wheel of a car every day, multiple times a day, never thinking that we are operating a deadly weapon. We require no background checks for these weapons, no psychological exams. We advertize their sale on TV. Nobody thinks twice about it. Yet a car can kill you just as dead as a gun. We tell people who are bullied to speak out, never thinking, "Hey... What happens when there's no grown-up around?" As someone who was bullied as a child, I'll tell you what happens: you get it twice as bad after you've informed a teacher than if you kept your mouth shut. And the bullies at school weren't nearly as bad as the bullies I had to face in my own family every summer break. School was a vacation from violence for me.

Now I'm living in a country I don't recognize. I read about this type of country in school, and the book was 1984. Big Brother is alive and well in Trapwire, in the local traffic and people cameras, and even in the fat-shaming on the TV, even though any look at the numbers will tell us there are more unhealthy skinny people than there are unhealthy fat people (thank you, Science Friday on NPR). We are punishing people for stupid reasons, all to attain some dreamlike society where no one does any wrong, ever. AND IT'S JUST NOT POSSIBLE.

Our politicians and police keep saying, "We need more power to keep you safe!" Can you keep me safe from my own body? Can you keep me safe from the arrogance of a respected surgeon who let me wake up on the operating table and infected me with MRSA? Because those are the things that have nearly killed me. Can you keep my uncle safe from the cholesterol drug that paralyzed him? I still see the ads for it on TV...

LIFE IS DANGEROUS! We all die of something. And we are letting our fears cripple our lives. This must stop. But as a good scholar of history I know that we will make stupid decisions like locking up Japanese-Americans just because we know who they are and ignoring all the German-Americans because they're white and European looking. We wanted to shut out German-Jews because we feared the saboteurs that might try and sneek in amongst their ranks! How many more died in the Holocaust over our fears?

There is a new holocaust going on. The Kurds have already found the mass graves full of women and children. Yet we'd rather believe the monsters are made over there than admit that they live amongst us right now. We'd rather let hundreds of millions of pain patients suffer and live in torture then deal with the minascule few who use drugs to escape from emotional pain, despite the fact that 50% grow out of their addiction with no intervention whatsoever,, according to the DEA.

Politicians talk big, saying they will keep us safe. But when have you actually seen a mass-murderer stopped before a shot was fired or a bomb exploded? NEVER. We were only able to pacify the Germans and Japanese through occupying those countries for FIFTY YEARS. It takes a generation or two to change people's warmongering ways, but we've lost the stomach for that, wanting quick solutions and fast results. We focus on the small problems like terrorism forgetting that two hurricanes (Katrina and Sandy) did more damage and cost more in economics, and human lives lost and disrupted, than their suicide bombings could ever do.

We are insane in this country. It needs to stop. Reasonable voices and facts are being drowned out by fear and hate. We ignore pain and suffering, then pat ourselves on the back for a job well done. It shames me that we speak of freedom and liberty. We are such liars. This is not the United States of America I was taught about in school. I don't know where She is. We need to return to Her, and I don't know how.

Together, we might be able to. But it's going to take courage-- courage that I don't know we have-- to start doing right again. God(s) help us.

Applying for Social Security #Disability

I have been doing Social Security cases since I applied for Social Security myself 14 years ago at the tender age of 29. For the first 12 years, my success rare was 100%, and no one ever needed to go to trial. Times have changed since then.

I tweeted last year that the Disability fund was going to go bankrupt in 2016. Thankfully, Congress fixed that, but at the expense of our debt. There's no other way right now. As a side-effect, however, there's still terrible news. People who used to be considered disabled (quadriplegics, for example) are being denied disability and thrown off the disability rolls. I have 3 clients right now for whom that is the case.

It’s a terrifying time to be disabled in this country. That’s why I wrote my book, Chin Up! 50 Ways to Make Money While Disabled. People don’t understand that thigs like the ABLE act is only if you were disabled as a child. Even though I was disabled so young they consider me retired, labels are a big deal to government programs. I thank my lucky stars ever day for my writing career prior to when I got sick. As Ben Carson and Hillary Clinton are learning, words are slippery and the pen is mightier than the sword. (Which, by extension means Twitter and Facebook are more powerful than the TV news).

The point is, no one gets rich on government cheeze. Oh, they’ll tell you about fraud cases and widely publicize it, but I can guarantee I make less than 25% of what I could make if I were able to work full time. When I can’t work, I’m poor. When I can, I’m okay. Kicking me off SSDI isn’t necessary to motivate me. I still work today, though only part time. My disease is a full-time job that no one would want. But damned if I can’t quit being disabled like I can quit a job.

Obama exploded the disability rolls from 9 million to over 15 million at the peak. And people wonder why people in wheelchairs are being thrown off and no one can get on disability. We’re broke folls! The gravy train is over, and real, legitimate cases are being thrown out with the bathwater (pardon for mixing my metaphors). A lawyer I know in Phoenix won’t even take a disability case if the applicant is under 50 years old.

Times are hard, and they get hardest for people at the fringes first. Here’s how to prepare for your SSDI/SSI application:

1. If you can apply online, ssa.gov has an easy application process. If you need to apply on paper, you can call and ask for the forms to be mailed to you, or you can pick some up at your local Social Security office.
2. Gather all your medical information, make xerox copies. ALWAYS KEEP YOUR ORIGINALS. You can send/take in your paperwork with your application. This can help you to avoid an appeal.
3. If you need assistance with the initial application, many disability advocates can do this for FREE. You can never be charged money for your initial application, otherwise it can be considered government fraud.
4. If you do have to appeal, you don’t need a lawyer to file (this is what I do for my day job). Lawyers are only required if the appeal goes to court. You CAN be charged money at this stage, but it won’t come out of your pocket. The Social Security Administration pays for you.
5. If you require a lawyer, a lawyer from ANY STATE will do, since Social Security Disability is a federal program. (This is not true for state disability.)
6. You can appeal as many times as you want. You can also go to court as many times as you want, as long as there are new circumstances (you got worse, you got something new, etc.)

If this is too overwhelming for any reason, find a Social Worker in your area. They can help guide you through the process. DO NOT trust what the workers at Social Security Offices say. Many times they aren’t current on the laws. They’re bureaucrats after all.

What You Can Expect Once Approved
If you were disabled before 18 years old

You are in a special category.

You will be placed on SSDI and SSI because you havent been able to pay into the Social Security Trust fund, not being old enough to work full time, since it's expected you did school full time (if you could attend school, that is). You will have access to benifits stipulated in the ABLE Act (for more information, check out this list of 10 Things to Know About ABLE Act).

Your first check will be dated according to when the federal government considers you "Officially" Disabled, minus five months. If there was a delay from when you were first disabled to when you were approved (sometimes the process can take years to be approved) you will receive a large sum payment. It is every monthly payment you would have received if you had been recognized as disabled when you actually were disabled (minus five months).

Approval for Medicare benefits runs on a different clock. More on Medicare to come in a later post.

If you are approved between the ages of 18 and 29

Again, you are in a special category.

You may have worked as an adult at this point, but if disabled at this age, you haven't had enough time to pay into your Social Security Trust Fund. As a result, there is a special formula the Social Security Administration used to calculate your SSDI payment, based on your income for the last year you were employed. You will receive a larger SSDI check as a result, and you may not qualify for SSI as a result.

The rules for your first check are the same as above.

If you are approved between the ages of 30 and 61 (or there abouts)

You will receive SSDI based on what you have paid into your Social Security Trust Fund. If that amount is too small (i.e., you're WAY below the poverty line), you will also qualify for SSI.

Your first check follows the same rules as in the first section.

If you are approved at the age of 62 and up

Because you are the age of retirement, you will be pushed into retirement and may not revieve approval for SSDI. If this happens, APPEAL! You can receive both your Social Security retirement check and a disability check if you can show your disability is severe enough. This is because most retirees are healthy for a while before old age itself becomes crippling.

Your first check(s) will still follow the rules as mentioned in the first section.




Feel free to ask me any questions. You can reach me through Twitter at @MakeThisLookAwe or @DsabldMnyMakrs

Life is a Double-Edged Sword

Now that I'm the age equivalent of the answer to "life, the Universe, and everything," I'm hoping to grow in wisdom. For my birthday, I "celebrated" with a double dose of ER visits. It wasn't my best birthday, but then I've had worse too. I've been on this earth long enough to have a number of educated complaints, but I can also have a sense of humor about it too. That's the way it is with law, which a lot of people don't realize. Words are a double-edged sword. They can cut, and they can heal. Medicine is a double-edged sword: it can hurt or or can harm. Information too: your data can be used to redeem you, and it can be used to bury you. It just depends on which side of the sword you're on: the cutting edge, or the flat of the blade.

Stories are like that. Who you're cheering for really agrees to the side with whom you most identify. We all can skip over the bits we don't like, or are too boring for us, and find the plot which interests us. It's a field of study called semiotics, a part of language that acts as signs and symbols we can all follow like a roadmap. But the direction they take us is not necessarily where we think we're going.

I had a great exchange with the doctors yesterday. I know I can get combative with doctora. It's not something I do on purpose. Hurt, confusion and fear easily lead to anger. They can also lead to submission. It just depends on what sogns we see in other people's language as to which road we end up on. I had a moment when I didn't understand what the doctor was telling me. I had a feeling she was not as well informed about endocrine issues like I had. Whether or not I was right really doesn't matter. She was seeing a pattern that I couldn't see, and in it there was something that worried her. She was able to explain it to me, and suddenly, I relaxed. Yeah, it meant getting a spinal tap on my birthday, but at least I was in the clear for meningitis!

On my way out I ran into a man who had been thrown out by the doctors from the hospital (contrary to popular belief, they can throw you out or keep you as long as possible at an ER, the only recourse is medical malpractice, if you live, can afford the attornies, and win your case). He was hostile, and the people there didn't understand his difficulties were not because he was messed up or drug seeking, he was still recovering from a stroke. But piss the staff off or anyone else, and they'll throw you out as equally skillfully as they will treat you.

So yeah, they doctor hit a nerve in my spine, but it wasn't as bad as the first spinal tap I had where the poor student really jabbed me, and the doctors didn't bother to tell me to take it easy afterwards. Apparently I have tough skin, too, probably a side effect from my Sjogren's, but at this point who can say if it isn't from the nerve damage in my skin too? Sometimes my Sjogren's is in remission and I sweat like normal. Other times I don't and save money on underarm products.

It's the same way with medication. It can heal, cause harm, or get you high. Truthfully, the drug doesn't care which it is. Crestor can save lives, or it can cause paralysis. Marijuana can get you high, hungry, and horney, ot it can take away pain, instill joy, boost proper immune and endocrine response, and heal PTSD. It can make you forget, or it can help you remember. Any medicine can do that. Any medical prodecude can do that. Is having a permanent condition bad? Sure. But not so bad if you consider the alternative was dying.

In Iceland there's a saying: it's not the drugs who make the addict, it's the need to escape. What's the difference beetween a food addiction and drug addiction? You can't quit eating food. But then it's just as dangerous to avoid all drugs. Christian Scientists have a huge problem with early mortality for that reason. Heck, you can get a prescription for oxygen, and that stuff is free in the air! Oxygen is a drug that causes euphoria. But you don't want to quit breathing just like you don't want to quit eating, just like drugs can be helpful, harmful, and fun all at the same time. Life is a double-edged sword that way.