Wednesday, November 19, 2014

Talkin' Bout My Medication

(With apologies to the Who…) Medication can be a delicate subject with many people. In the U.S., there is the sense that too many pills can make you a “pill head,” something undesirable in a country that believes in pulling yourself up by your own bootstraps. So when it comes to admitting we need additional help, many people are loathe to admit it. There is also still a good deal of stigma surrounding medications, depending on the type. Pain medication (whether narcotic or not), psychiatric medication, and ADHD medication can call cause the medically uninitiated to raise an eyebrow. But those of us with chronic illness know, “They call it a drug cocktail because the number of pills you have to take can fill a shot glass.” How then can we keep ourselves safe?

​One way to stay safe is to stay informed. There are a number of medication websites such as,, and that provide important details about your medication. There you can learn what side-effects may accompany your medication and any drug interactions that may exist with other medications or conditions. You should also make sure to write down how often and at what doses you should take your medication, what you should do if you miss a dose, how long before you begin to notice the effects of the medication, and what you should do in case you need to stop the medication for any reason reaction (side-effects too intense, allergic reaction, dosage too strong, etc.), and how expensive the medication is if you're on a limited budget.

​Especially make sure that you take note of dosage instructions from your doctor. Transcription errors often occur, even with the best of intentions. I remember a time when I was given a powerful narcotic after surgery, one that was only supposed to be taken every 12 hours. However, someone in the pharmacy made a mistake and wrote it every 1-2 hours, which would have killed me if I’d followed the instructions on the bottle! I brought it to the attention of my doctor, and she threw a fit at the pharmacy. It was the pharmacy in her building, so she knew a lot of patients went there.

​If you are on significant narcotic painkillers, meaning doses high enough that could cause breathing complications if too many are taken, you may want to look into a counter-acting medication called Naloxone. This medication is a pure opiate antagonist, meaning it cancels out the effects of an opiate-based drug. In fact, some EMTs and police carry this drug in case they need to respond to a heroin overdose. It works just as well for accidental overdoses on opiate narcotic painkillers.

​One important medication issue is medication recalls. Even if a medication is able to pass all FDA safety checks, problems can still arise once the medication is released to the general public. This is not a new issue, but a continuing one as new medications are released to market. For example, Xarelto is used for the prevention of deep vein thrombosis (DVT) in people undergoing knee or hip replacement surgery, but has been recently recalledfor a bleeding risk. If you're worried about medications you take, you can check whether there are any recall alerts through American Recall Center's database. You can also personalize alerts to be sent to you if any medication you take should ever be recalled through their Patient Safety Alerts.

​Another medication issue is disposing of unused medication. It once was the case that pharmacies could not take back medication for any reason, for various legal reasons. However, with the rise of discovering medications in water systems, including drinking water sources, the old “flush your unused pills down the toilet” no longer applies. Many pharmacies now have a drug disposal service with easy drop-off centers. Alternately, you can return unused medication through your doctor, who has the ability to properly dispose medical waste.

​If you’re on important life-saving medication, or have a severe medication allergy, you’ll want to have that information put on a medic-alert bracelet or necklace to inform medical personnel in case of an accident where you are unable to communicate for yourself. Other medications can be kept on a list with dosage instructions in your purse or wallet. And if you're on a medication that may require the assistance of someone else (such as an emergency shot or pill), make sure someone close to you knows when and how to administer your medication for you.

​Medications are wonderful medicine that can keep us alive, relieve our suffering, improve our performance, level our heads, and provide sleep after a hard day. They are to be respected like any tool, and are never to be abused. Like tools, we should be informed on their use and know how and when to use them, and what to do when things go wrong. We should use medic-alerts if needed and tell a companion as necessary. Through proper application and use, medications can be safe. We should stay vigilant, write down what the doctor orders, and ensure what we get from the pharmacist matches. If we have any questions, we can talk to our pharmacist or doctor, or find answers online.

Monday, October 27, 2014

Zen & the Art of Chronic Illness

One way to learn how to "Live in the Now," is to get a chronic illness. I realized this after I called a friend of mine and invited him to come over. I had spent the night before in the ER for a kidney stone, and when he showed up I asked him, "So, what do you want to do?" He laughed. "Do? Woman, you're still wearing your ER bracelets and you're asking me what we should do? How about you REST?" The though never occured to me. I was okay NOW. Why did I need to rest? And that's when it hit me. It didn't matter what happened last night. That was last night. This was now. My chronic illness made me a better Buddhist than decades of awareness training. Who knew! LOL

And if I'm completely honest, my chronic illness has made me powerful in ways I never thought possible. All those ideals that i thought were so lofty when I was healthy, ("don't sweat the small stuff, and it's all small stuff," "don't worry about what hasn't happened, let go of what has," "first things first," "but for the grace of God, there go I...") are now regular habits and 2nd nature to me. I couldn't believe it, but here was my friend laughing at me, because I just had.

I thought that my life and my growth had been interrupted, and that I had become stagnant, trapped at an age below my peers. I thought that because my dreams of achievement had been put on hold, I had been put on hold. I thought that because my resume wasn't listing any new skills, I wasn't learning anything new or adding to my mastery of any subjects. I thought that life was passing me by, and that meant I was no longer a part of life. I thought that I had "nothing to show for" the time that had passed. I thought that because I wasn't climbing the social ladder, that I wasn't going anywhere.

Boy, was I wrong.

In fact, my disability allowed me to do what most people wish they could do, but can't! Normal folks have to turn to monastic living to achieve the separation from "the pressures of the world." I'd been given a golden ticket on a wild ride through horrors and wonders, tackling some of the scariest topics in life: what does it feel like to be dying? what's the worst pain I can endure and survive? do I know how to come back after a devastating blow? can I put my life back together if it all falls apart? can I tell when something is seriously wrong? do I know how to ask for help before it's catastrophic & beyond my control? can I swallow my pride/fear/righteous anger/shame, and do what needs to be done? can I man up in the worst of circumstances? can I take care of myself as I grow older and start to lose my faculties? do I have what it takes? can I keep myself safe?

I have answered those questions and multiple times. My ability to bounce back happens the moment I am physically able. I know I can trust how I feel and report it accurately and fairly. I don't respond to how I imagine things to be in my body, I react to how they are. I've had several examples of this, but one big ones stands out: I have no startle response when strangers touch me, or of I'm touched unexpectedly.

You know the kid's game: come up behind someone and tap them on the shoulder opposite of the side you're standing on, and watch them jump to see who did that? I've had strangers come up behind me and put their arm around my waist when I wasn't expecting it, and not only did I respond like I knew it was going to happen, but I let them move me to the side as though we were dance partners. What it actually was, was a bartender moving me out of the path he needed to take, but I couldn't know that from the back of my head. (There was also no alcohol involved!) It didn't feel like a stranger had grabbed my waist from behind. It felt like my husband had put his arm around me, it was that comfortable. I've had the same experience when struck by inanimate objects. I just don't startle easily anymore. It's amazing what it takes to make me jump. I've achieved a level of bravery I didn't know was possible.

Life didn't pass me by... I was learning lessons most people have to wait their entire lives to learn. I was being given such a deep understanding of the principles most spiritual practices hold dear they became part of my nature. My disease has been a spiritual guide through some of the most advanced topics in life. What I once feared and anguished over no longer troubles me. I intuitively know how to handle situations which used to baffle me. And even though I was removed from the normal path of life, I see how even my experiences can benefit others.

In my last year of college, I started freaking out. I didn't know what to do with myself or what my life's purpose was. I even went so far as to go to a counselor to try and figure these things out. For the longest time, I thought my purpose was to be a mother and help nurture a new life into this world, passing on the lessons I had learned. That dream will probably never come true for me. But in its place, a much larger life's purpose has grown: to serve the community of those suffering in illness and disease, and those who are dying or who long to die. Most people are terrified of saying something wrong when someone they know falls ill or starts talking about depression or suicidal thoughts. A lot more people freak out or run away completely. Not me. I'm just fine tackling those issues.

And as my friend's laugh reminded me, I thoroughly live "in The Now." Without even trying, I have found that present-moment focus that monks study for years to achieve. I am not attached to what just happened. I let go of the moment once it has passed and allow it fall from my sight, just like the autumn leaves fall to the ground and are carried away by the wind. What's past is what's past, what's now is now, and this present moment (and my current abilities in it) is all that matters.

Wow! Who knew?

Friday, October 24, 2014

U.S. Spends 40% less on Disability Benefits/GDP than All Other Nations

Less than 1% of people who are disabled are able to come off of disability and return to work. That number should not statistically be possible. Less than 1% who are disabled become un-disabled? That was told to me by a Social Security Administration official. And looking at the picture further, it's even less rosy.

According to a recent analysis by the Organisation for Economic Co-operation and Development, or OECD, the United States has the least generous disability-benefit system of all OECD member countries except Korea. The OECD describes the U.S. disability-benefit system, along with those of Korea, Japan, and Canada, as having “the most stringent eligibility criteria for a full disability benefit, including the most rigid reference to all jobs available in the labor market and the shortest sickness benefit payment duration.” In addition, the United States spends less as a share of its economy on incapacity-related benefits than other nations. In 2009 public expenditures on incapacity-related benefits comprised just 1.5% of U.S. gross domestic product, or GDP, compared to an average of 2.4% for all OECD nations.
The Facts on Social Security Disability Insurance and Supplemental Security Income for Workers with Disabilities— Center for American Progress (emphasis mine)

And no one is getting rich on disability. Before the Great Recession, the overall employment rate— which the Social Security Administration defines as: annual earnings over just $1,000"— was only 12% in 2007. That means 88% of people on disability earned less than $2.70 a day. When I was employed, my morning tea cost more than that! And yet there are still alarmist articles like this one from Forbes which claims:

Benefits that would replace a significant portion of their previously earned wages, while also qualifying them for Medicare, our generous health-insurance program for the elderly. Today, the United States spends around $200 billion a year, literally paying Americans not to work.

I don't know what you consider significant, but my income is only a little over one fifth of my previous income. Also, I am limited to making $1,000, or I loose my benefits. This, while also not underpaying me for my skills (per Social Security rules). That means I can only work 6.9 hours per week. A old girlfriend of mine who was in sales can only work 3 hours per week! You find either of us a job like that, and we'll take it!

So the difference between most and the poverty line is only $4,000, and I can guarantee you most disabled folks medical expenses are more than $4,000 in a year. My medications alone average more than half that, and I've turned down my doctors offer of a few medications because they were too expensive. and let's not forget how much dental care costs should anything go wrong with your teeth, because Medicare doesn't cover dental at all, never mind that loads of medications and conditions ruin teeth and can make wearing dentures impossible.

And Social Security rules are made to keep recipients at poverty levels, after first subjecting them to the most rigorous screening process in the world! Not only do they want to keep our group as small as possible, but they want to ensure our dependence on a system that keeps us in poverty! Less than 1% of small group to start ever make it. It's worse if you were disabled after 30 without having had paid enough FICA tax. That is, if you receive SSI along with SSDI benefits, you are limited to only $2,000 in assets whether earned or in gifts, a number increased only once, in 1989, and never adjusted for inflation.

What I see is a system that punishes its most needy, trapping them in a world where their suffering is only compounded by the constraints it places on them, saying essentially, "If you are truly sick (which we highly doubt in the first place), you don't deserve a route to success. The "Pursuit of Happiness" is only for people created equally, and since you are less than, you shall receive less than." As of March 2013, the average monthly benefit for a disabled worker was about $1,129, with male workers receiving $1,255 per month and female workers receiving $993 per month on average.

Yes, Social Security has programs for becoming "financially independent," but to take advantage of these programs, you are required to plan to quit using your benefits as a result of receiving this "hand up" on a timed progress line (usually 3-5 years), regardless of whether or not your condition has improved. Basically what they're saying is, we know that your disability should not be an impediment to you being a fully functioning member of society. We know that if we help you learn some new skills, get assistance setting up your business, or invest in some small ticket items for your future (never to exceed the amount of your monthly benefits), then regardless of the condition that disabled you, you will magically be able to make enough money to support yourself and no longer need disability benefits or Medicare. (Nevermind that it would have been impossible to get health insurance after being disabled until four years ago.)

If you made any sort of success for yourself prior to becoming disabled, you're penalized and kept from a career that was successful up until the time that your health went south. Social Security requires that you never ever charge less than fair market value for your work, even if you're providing a discount because you may not be able to meet deadline like someone who is health. That's not what matters. What matters to the Social Security Administration,kk is you're doing the same work, and therefore must charge the same as a healthy person would.

In this way, many people who would like to make themselves financially stable are scared into avoiding assistance services, because we are required to plan to leave the safety net of disability benefits, regardless of whether or not our condition has improved. Income, rather than illness, really determines if you are disabled in the U.S.

Meanwhile, the stigma that disable people are somehow cheating everyone else out of "hard earned" money (as if disability is "easy" money) by inflammatory articles like this one from Forbes, "How Americans Game the $200 Billion a Year Disability Industrial Complex" This title makes you think that people on disability make $200 Billion a year, but that's just not true. It's the Disability Industrial Complex that's worth $200 Billion. That number is not an entitlement. It's an asset value! And what's with the word "Game"? What an explosive word to use, nevermind that it ignores all the facts!!

There is some hope on the horizon. The ABLE Act would allow those on SSI to create health savings accounts and not be limited to $2,000 in assets. This is especially important to children on disability as they grow older. If you're disabled as a child, you've never paid into Social Security because you've never worked. Therefore you're on SSI and limited to never owning more than $2,000 in assets. Mind you, the estimated cost of raising a disabled child is around $1,000,000. Basically the government has said to disabled children: Don't ever try. You were born at the bottom and you will stay at the bottom. A disability should not create a class system in this society, but that's exactly what we've done.

Let's change this!

Tuesday, October 7, 2014

Father, Welcome to My World

My father has leukemia. It is not the fast-moving kind, so there is a blessing in that. People can live for decades with this type of leukemia, and the doctors don't suggest anything should be done at this time. Still, he's frightened, and is now required to see a doctor every six months to check it. He's also already experienced doctor misdiagnosis, as they ordered a colonoscopy seeing a "mass" that was actually one of his own organs. Regardless, they terrified the poor man. He was sure they were going to tell him it was doom. And after going on that medical emotional roller coaster, he understand me and my struggles even more.

I've been sort of poo-poo'ed throughout my illness by both my parents, though my father has been consistently more supportive (my mother calls me names). Now, I have someone else going through what I've been through first-hand. It's different when you almost die and you have over a week in the hospital as the doctors piece you back together. That type of experience does change a person, and does make you immediately assume all other news you receive is going to be just as fatal or near fatal.

He understands me now.

He understands my need to say, "I love you," at the end of every call, because it may be the last time, and he says it first now. He understands how hard I've been working, and he supports my decision to not try and return to full-time work. He's going to support me as long as he can. I'm doing my best to make my own future, and he thinks I have a good idea, and that I should follow my dream. (This from the man who I had to fight to get my education, education that he gave my sister for free... he's always felt guilty about that.)

And he's depressed now. He's struggling. And I get it. It's difficult to have hope for a bright future when the bullet has already left the gun, and it's just a matter of time before it strikes you down. I get that. And I get how painful it is as the disease ravages you, unchecked. He has a harsh future ahead of him, even with all his recovery from the stroke, and that's difficult to know. There is a freedom in knowing what has caused your suffering, if you've been hurting for years and no one can tell you why. It's different when you just think you're growing old, and find out, oh, no... it's far worse than that.

I am doing the best I can to help him, though we have a good laugh at some of my poorer attempts. His eyes have been opened to a grim reality, so I understand that it's not so easy. My heart goes out to him. I know from experience how difficult this road is.

And though I hate that my father is now a part of this club, it's nice to not be so alone...

Thursday, September 11, 2014

So much, I don't know what to think!

First, I'd like to thank everyone who has been praying and sending their energy to me and my family. IT WORKED. My father has made a miraculous recovery: his paralysis is gone, he has a few remnants that will require therapy, but his prognosis is good. Beyond that, he has had what I can only describe as a "spiritual awakening" (aka, a "come to Jesus" moment). He told me, "I need to rethink everything!" And yeah, he does. But true to form, the day after he got out of the hospital, he went back to work! (He's self-employed, so mainly it was to let everyone know he was okay...). So, yeah... GREAT news.

And that's not all.

I went to my new endocrinologist and she was AMAZING. She reminded me of Doc Broyles, and she patiently took my story spending over 45 minutes just taking notes and getting my background. She not only believed me, she kept repeating "Your story is consistent, so..." which I can only interpret as, "I don't think your lying, so...". That was so reassuring. Then she apologized for my bad experience at Anschutz and told be that the doctor I encountered can get very defensive when challenged, so I was unknowingly setting her off! Plus, I was informed when she was proven wrong, that probably brought out the worst in her. However, she's apparently an excellent teacher. I was floored.

But wait! There's still more!

She took a thorough background of my estrogen levels and let me know that it should be possible for me to have children! She's willing to support me having a child even with as much trouble as I've had, even with my health risks!!! I went into orbit... the only thing that I know I've wanted to do and be is make a child from my body and be a mother. I had put that beautiful dream under a bell glass and stuck it on a shelf, like a butterfly pinned and put on display: beautiful but impossibly dead. But now... a child of my own...

It's so much, I don't know what to think! I try to, but then I'm just in awe of how amazing it all is. This magnificence is staggering...

So THANK YOU!!! To you, the stars above, and any divine assistance!

I'll try to update soon, but man it is hard to think! lol

Until then, thank you again.

Friday, September 5, 2014

Walking Towards A Future Me

You'll forgive my moment of darkness in my last post. I haven't ever been around wholly supportive environments. If I had healthy friends, it was purely by accident. I don't know what it means to be "unconditionally loved" and I don't say that asking for your pity, simply your understanding... I wouldn't recognize normal and healthy if it bit me on the nose. But this hasn't always been terrible! I know where my home is... I'm just too medically sensitive to it (me + humidity = NO). And I've been feeling like a lonely little petunia in an onion patch for years now... But I do have a tribe, be I far from them. I have been blessed by the strange and the wonderful, and I look forward to joining your ranks again!!

I get to have standards in my life, and I know what to recognize. I can trust my wisdom, and my ability to avoid danger, and beyond that---my Deity takes care of the rest. I have denied myself my true self for far too long. My life may be broken shards, but how else you gonna make a stained-glass window?

[Pause for a brief announcement:]
I'm still in shock, I just got the news. My father's had a stroke and is paralyzed on the right side of his body. His brother is there, tending to him. He's alive and in hospital. I may be silent for a bit...

Sunday, August 31, 2014

Chronic Illness Haiku

Do not hug me, I'm
Broken, and the sharp shards of
My life will cut you.

Tuesday, August 26, 2014

Just Say No to #YOLO

The You Only Live Once (#YOLO) meme has bothered me for some time, and I've recently discovered why. The Japanese have a saying, "Fools learn from experience. The wise learn from history." But beyond immaturity of the people who use #YOLO as their pre-debauchary battle-cry, the very concept of "you only live once" bothered me, and up until now, it didn't make sense to me. I mean, it's technically true: we do only get one life. But that's not exactly what's being said here. Life is a noun. Live is a verb. And that difference turns out to be pretty important. Because looking at it that way, you discover that "you only live once" is NOT true. I'll explain why...

I live every day. Every day that I am alive, I live. The only way for me to stop living would be to die. So saying "you only live once" isn't true. Once is a single event. But your life isn't a single event. It's a whole bunch of events, many of which we get multiple opportunities to in which to participate. It's "Once Upon A Time" to show that the story you're about to hear is unique. "And this one time, at band camp..." Saying "Once" is to pre-load the meaning that this is a "once in a lifetime" event, only that's rarely ever the case. Additionally, a snappy comeback to #YOLO is #YODO... You only die once, too! Only this never satisfied me as on point... there was something still missing, and I finally figured it out.

Ther real meme should be #YOGOL, or: You Only Get One Life. This properly conveys the importance of living your life the way you see fit, without doing risky behavior like cliff diving to prove a point! You only GET one life conveys the importance of preserving your life while living it for your sake. #YOGOL strips out all that stupid peer pressure of, "Why don't you want to? #YOlO!" and shoves it right back in their face. Just because you've never done something before doesn't mean you should try it! Most people have never experiences a gunshot wound either, and I don't see folks lining up for that once-in-a-lifetime experience!

So the next time you see someone throw down a #YOLO hashtag at you, tell 'em: "#YOGOL & no thank you." Most will try to defend themselves, but a few might actually get the point. There's a big difference in treating your life as a noun, an object that is replaceable, and a verb, an action you perform. By changing the verb to a noun, they've been able to take something that is not true and make it sound true. That's dangerous enough alone, before considering the dangers involved in the #YOLO act they're persuading you to do. It's like knowing a dangerous bridge is unsafe, but teling exeryone it's fine and if no one gets hurt in the process, why bother with the truth? Nothing bad happened, so they have no reason to be angry! Right?

Wrong. Saying #YOLO means you're putting the other person at risk for your own gains using a subtle distortion of the truth. If, by some miracle they don't get hurt, it's no thanks to #YOLO or you. It was pure luck, and luck can run out, so be careful. If they do get hurt, there will be hell to pay (and possible lawsuits), for not informaing the other party of the risks you knew. There are so many things not worth dying or getting injured over!! So let's get together and get folks to drop the whole #YOLO meme and start saying #YOGOL instead. It's time we put these hashtags in their place.

Tuesday, August 19, 2014

Skeptability | Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker

This article is a must read and is spot on: Skeptability | Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker If you're a cronic pain patient, and especially a young chronic pain patient, you know this all too well. ER doctors see patients so fleetingly. As such, they are mostly trying to make sure a process is completed, rather than a patient treated. They leave treatment to your GP. Their job is to stabalize you and get you on the road to recovery (out the door) or transfered to hospital and longer-term care (also out the door). Pain is just a symptom and an annpying one, because it instantly means the government looking over your shoulder. All narcotics require forms in triplicate with a DEA assigned number that allows the, to prescribe those narcotics. But use "too much" (and they never tell you where that line is) and you could lose your career, get sued, and all sorts of woe betides. It's easier to throw a patient out as a druk seeker than to treat them as a pain avoider. Which, of course, suits the DEA just fine. Nevermind that 50% of drug users outgrow their addiction, by their own statistics, they're winning the War on Drugs (and ensuring their pensions).

Me? I'm from Missouri, the "Show Me" state. I'd like the DEA to show me how they've "won." I want them to show me how this has made our society better. Because, that's the point, right? Keep the "bad" elements out of society and only the "good" elements will be left, right? Except, that's not exactly what happens, is it? Because these things are illegal, it automatically involves a criminal element, by definition. And if you can't go to the courts if someone robs you or screws you over on a contract, you automatically involve vigilanti justice. That means violence will ensue. You've now made a problem three times as worse than when you started, just because you drew that line and said: "that's illegal."

And what do we do with drug addicts besides lock them up? Hopefully we avail them to a treatment program where ... wait, treatment? Doesn't that mean medical? Why, yes! Yes, it does mean medical: drug addiction is categorized as a disease of biological origin that responds favoribly to a regular treatment program, just like any other disease. So what you're saying is, there are certain diseases that make you a criminal. Really? That's what we want to stand for in this country? And have other patients who are at a disadvantage but who aren't criminals caught in the cross-fire as well? Tell me you're starting to see what a bad idea this is...

But we couldn't do that! Decriminalize ALL drugs? There'd be *madness* and chaos in the streets. We would lose all control and descend into a sinful decadance as we all checked out of reality. Seriously? You mean to tell me everyone is just salavating over the idea of getting high, and the law is sacing them from themselves? You really expect me to believe that in this day and age? When Portugal has done so, successfully, for over a decade? Even the CATO Institute says the DEA is essentially solving a problem it created, and we'd have been fine if we'd left well enough alone. They're a Prohibition dinosaur that needs to go extinct already. We have destroyed our medical system... for what? Stop people from feeling good in certain ways or amounts? What sort of payoff is that?

We really need to change the culture in this country and wake the hell up.