Saturday, October 20, 2018

"For Whom All Other Options Have Failed..."

Those are seven scary words: "for whom all other options have failed..." but those were the requirements for the Occipital Nerve Stimulator study. I've learned that study is a golden standard among pain doctors.

"Have you tried everything?"

Yes, I've tried everything.

"Have you really tried everything?"

I was in the Occipital Nerve Stimulator Study.

"Oh, crap. You really have tried everything. Sorry, there hasn't been anything new since Lyrica in 2008."*

That's where I am in pain management. Out beyond the horizon in "we have no idea what the eff to do" land, looking at blank faces that read "our hands are tied on what we could do by insane government regulation, I have a family to feed..."

I'll overlook the fact the DEA is practicing medicine without a license if they would just let me talk to someone face-to-face.

I know a woman with Stage IV stomach cancer who can't get pain medication because of DEA regulation! ARE YOU KIDDING ME?? All because of a little clause that says if you use marijuana, even medicinally (hello? STOMACH cancer???), you are excluded from ALL narcotics programs. Period.


Um... Mr. Jeff Sessions, may I have a word?


Forget me and my pain, Stage IV stomach cancer and you're forcing her to die in agony. What the in the ethical hell has this country become?? This is Cruel & Unusual Punishment by fiat. We HAVE the drugs. They're completely AFFORDABLE. The SOLUTION is right there!!! But because of some moral panic over addiction, we're going to make this innocent, beautiful soul walk that path of pain...

Her life doesn't have to be Hell. Mr. Sessions, how as a Christian can you allow that? Have you no mercy???

God in Heaven, hear us.



(* As of writing this, that's ten years ago. That's how slow drug development is.)

Saturday, September 29, 2018

Psychology School (Pain Psych)

I'm just a soul whose intentions are good...
Please Lord, don't let me be misunderstood..."



So I reached out for some support services recently and made and enormous discovery: psychology does not understand chronic pain patients. Like... bad. Bad, bad.

I mean, you've seen in past me rant about how awful some of the literature is and there are things I would DEFINITELY NOT say to anyone in our circumstance. But I had no comprehension of JUST how bad it was. I met a woman there who had similar troubles for her stomach cancer. They didn't know what to do with her either. Thank God I had organized my thoughts here years ago. We were able to counsel each other.

So I need your prayers. I am attempting and have completed the first steps for a certificate in pain psychology. The need is just too great, and my ability to explain these experiences eloquently has always helped professionals.

Well, now they need to take me seriously. Because people are dying over this stuff. I've seen it on the reddit boards. The Opioid Crisis has pushed so many people off their meds that the suicides are skyrocketing.

It needs to stop.

I'm volunteering to try and stop it.

Wish me luck...





p.s. Apologies for the extended absence and faulty restart. It's been a rough time and I needed to hermit rather than spread my behavior around publicly. I was just too angry. I was frustrated with the problem. NOW, I get it. THEY don't get it. They think they do and they are oh so wrong, and have been wrong since Elisabeth Kübler-Ross, bless her soul.

I needed this experience to know what to do next. It's been a rough time, but I'm back.

Thank you all for remaining.

Monday, July 9, 2018

No Knife Mostly Microwave Quick Quiche

Requested by r/ChronicPain

Quiche is an egg soufflé pie that can feature all sorts of ingredients: ham and cheddar, broccoli and cheddar, spinach and onion, Italian sausage and peppers... whatever your heart desires. It's also a dish that can be eaten warm or cold, and easily re-heats. This recipe uses the microwave for a majority of the cooking, and takes about 30 minutes to make, all told (meaning you don't have to be on your feet long). Steps can also be broken up with rest in-between without any harm to the dish, so long as you don't leave the pie crust in the oven! I've also included Fancy steps if you want to do a little extra work, but it's written with quick & easy in mind.


Ingredients


1 pint heavy cream (can be whipping or light cream for less fat)
4 eggs
1c grated cheese (optional)
1/2c pre-chopped frozen veggies (optional)
1/3c meat or 4 strips of bacon (optional)
1/2 tsp salt or no-salt substitute
1 pie crust
{Fancy} 1 pat butter
Spices to top (your choice: black pepper/oregano/pepper flakes/paprika/etc.)

Equipment

Microwave-safe bowl capable of holding 4c liquid
Microwave- & oven-safe pie pan
Microwave-safe plate/bowl for bacon/meat
Measuring cup
Whisk or fork
Bowls for ingredients
{Fancy} Brush

Directions


Preheat oven to 450 degrees Fahrenheit


Remove pie crust from aluminum pan

For convenience sake, I go for the premade, frozen pie crusts. These usually come in aluminum tins, but can be removed easily but running warm water on the bottom of the pan then carefully patting the crust from the tin. The frozen crust will retain its shape and can then be placed into a microwave & oven safe pan.

Pre-cook crust

Once in the microwave & oven safe pan, you may choose to take the {Fancy} step of brushing the crust with butter. Otherwise skip to the next paragraph. Melt the pat of better in the microwave then brush outer crust with melted butter. Continue below.

Place EMPTY pie crust in oven for 14-16 minutes, or until golden brown on the outer crust.

Scald Cream

In your microwave-safe bowl, add the pint of cream and place bowl and contents in microwave. Microwave for 4 minutes on high. If a skin has formed on the top of the cream (it should), stir. Then microwave for one additional minute until the cream starts to bubble. If a skin has not formed, microwave at one-minute intervals until skin/bubbles form.

Set on counter to cool.

Prepare Ingredients


Measure out the meat, cheese and/or veggies you're going to use. Once the pie crust is finished baking, these will be spread on the bottom of the crust. If the meat needs to be cooked or pre-cut frozen veggies need to be thawed, microwave according to its instructions using your microwave-safe plate/bowl. Cover with paper towels to reduce microwave mess.

{Fancy} I sometimes cheat and use a knife here and cut block cheese into approximately 1/4-inch cubes. This will leave larger cheesy chunks in the quiche for a more authentic feel.

Scramble eggs and add to cooled scalded cream. (If the cream is a little warm still, that's okay, so long as it's not hot enough to cook the eggs.)

Fill Cooked Crust


Layer or mix (your preference) meat/cheese/veggies and place in the cooked pie crust.

Slowly cover with egg & cream mixture until full. Be careful not to over-fill (the amount of egg-cram mic will vary depending on the amount of meat/cheese/veggies).

Top with spices.

Microwave


Carefully place contents in microwave and microwave on high for 9-11 minutes until contents are cooked. There should be no puddle (see pictures below) and the eggs should be bubbling and bounce to light touch.

Raw...


Not yet...


Almost...


Done!


Let sit to cool & Enjoy!



Crust is flakey!


Saturday, June 25, 2016

FREE PDF Chin Up! 50 Ways to Make Money While Disabled SCAM

PSA If you find a link to a FREE DOWNLOAD PDF version of my ebook Chin Up! 50 Ways to Make Money While Disabled DO NOT give them any credit card information, EVEN IF they say you will not be charged. There have been several complaints against their over 100 websites and businesses, which also include online games, movies & other clickbait.

It HORRIFIES me to think that anyone is using my ebook to scam people, even more because of who my target audience is! I've tried to make my ebook as inexpensive as possible (most ebooks on disability law start at ten times the asking price), provide it free to folks already enrolled in Kindle Unlimited, allow folks to share the ebook in whole or in part. I don't want anyone to think they have to go through some blackmarket website to get the information they need. Therefore I am running a FREE EBOOK PROMOTION JULY 4, 2016!!

I'm allowed to do this five times through Amazon. This is the first of five, so if you don't catch this one in time, don't worry! There will be another soon. to get your free gcopy, just go to Amazon.com on July 4th and download. Simple!

Spread the word: DO NOT buy the PDF version, it is total clickbait! (As a rule, if they say it's free, but they require a credit card, it's not free.)

Feel free to comment here if you have the ebook and are willing to loan it out to others.

Thursday, March 17, 2016

My Peace

Peace is often the first thing to go with a chronic pain condition. Your body is not at peace. Your mind is not at peace. Even sleep refuses to be a safe haven. So when you do find the right combination of medications that puts the symptoms to bed, the peace that follows can be such a foreign feeling that its stillness roars.

My doctors and I have found that sweet spot, we know exactly where it lives, with a new added bonus: I require even less medication to acheive the same degree of control. The miracle required for improvement turned out to be very simple (and please don't laugh, I know some of you have been saying this for years): I quit smoking. Now I break out in hives if I try to take even one puff. What I didn't realize is how much of a toll fighting off that allergy was having on the rest of me! Now my pain is less, my energy is higher, I'm off the oxygen even at elevation and I'm feeling like a new woman.

This.

This is why I hang on with all my might. This is why I try to be grace under pressure. This is why I try new things and take the risk to travel despite it all. Because only once will it get so awful that there's no coming back. Every time before then is just another trial to go through to reach peace and happiness on the other side. Until it's the last time, time will always change things. It may not change the things I want changed with the promptness in which I want them changed, but that's just my impatience. If I am able to wait long enough, something new will come along for me. And it really helps to keep a good sense of humor in the meantime.

This is why I was so frustrated— because this peace was just outside of reach for so long! We knew the answer. We could see it right in front of us. But a giant chasm of beurocracy had opened up and we just couldn't get there from here at the time. And now that the chasm has be crossed and I've arived, all that frustration and stress is melting from my shoulders. I am in control of my pain, it does not control me. I have the tools I need to tame the beast. I'll never have to doubt my ability to do something. I know I can do it. No longer do I have to cautiously think about each move. Now I can move without thinking, which allows me to concentrate on better things.

The relief from no longer having to worry from moment to moment, "Am I okay? Am I going to be okay?" allows everything else. "Yes, I'm okay, what do you need?" That statement is the difference between an employee and a consumer. Put me on the production side, always. I will be a contributing member of society, with joy. The only thing I might complain about is my commute. Everything is manageable.

Peace of body, peace of mind, peace of life.

Tuesday, February 9, 2016

New Year - New Goals

Apologies for my absence. Life got very real. Things are finally going to be set straight.

I used to have a rule: Never live south of the Mason-Dixon line. And if you know your American History, you know that St. Louis is below that line. Now, I have much love for The Lou and many a fond memory here. But in many ways this place is NOT good for me. Allergies for one. Weather for two. I need a dry climate. I can handle my nerves when it's cold and dry. Mongolia would be perfect for me. St. Louis is hot, humid, and wet. Half this place is reclaimed swampland. Pam + St. Louis = bad.

Add to that the research I compiled while I took my online vacation: it is damn near impossible to get legal pain prescriptions in Missouri. I have talked to multiple patients, I have made my own attempts only to be told the pain clinic makes no prescriptions.... I cannot find treatment here. My father's clients find any drug they need on the streets. They get hundreds of milligrams of methadone a day from the drug programs (often sold at $20 for 75mg). But if you have a legitimate pain problem, you're screwed.

So it's back to the land of sanity, and it's time to make a few changes.
1. I must quit smoking. The nicotine helps the migraines but my lungs are shot. If I'm going to live at 6,000ft, I need as much oxygen as I can get.
2. I must get better at posting here. The hiatus was necessary. I needed a walkabout. But it's time to come home.
3. I need to rent a house. Apartment/condo living is NOT for me. I need my sanctuary in which I can heal when I hurt.
4. Work. This SSDI is not cutting it. Not in this economy.
5. Publish the paperback. It's time.
6. Find my people.

Long term:
7. Financial stability (difficult with a chronic illness, but not impossible with work income)
8. Adopt

I became lost after the "But You Don't Look Sick" messages boards were taken down. It was like someone had come in and burned my village. I don't know where my tribe is anymore. We scattered to the wind and I can see no other villages in the distance. I need to be with my people again. Their support was amazing and got me through so much. I miss it terribly.

I need to shoot for the dream I've had since I was a little girl: I need to adopt. I need to be a foster parent. That's a piece of me I've left unfulfilled for too long. My body can't make children, not without a lot of expensive help. But that doesn't mean I can't be a mom. I will be a mom.

It's time. Happy Year of the Monkey!

Sunday, November 29, 2015

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.

Saturday, November 21, 2015

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.

Monday, November 16, 2015

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