Saturday, December 20, 2014

So When Do We Get to Buy a Copy of Your Book?

Welcome to the wonderful world of to publishing, where writing the book is only half the job! It goes like this:

1. Write the book
2. Typeset the book for publication (the phase I'm in now)
3. Buy first ISBN number for the eBook (required for the next step)
4. Create the book front cover, back cover, and inner jacket material
5. Submit the book and associated material for Approval
6. Wait for Approval
7. Get approval or go back to step 2 or 4
8. Get Proof Copy
9. Make changes and go back to step 6 or approve and publish
9. eBook gets published in about 48 hours, tell EVERYONE.

Then...
10. Typeset the book for print publication
11. Buy another ISBN, Bar Code, and a Library of Congress Code
12. Reformat the covers & material for print publication
13. Submit book and materials for print publication
14. Wait for approval (several weeks)
15. Get approved or go back to steps 8 or 10
16. Get a proof copy
17. Check for errors
18. Make changes and go back to step 16 or approve for publication
19. Paperback gets published, tell EVERYONE.

So as you can see, I have a lot of work still ahead of me. I'm doing this on less than a shoestring budget, and I've enlisted a lot of volunteer help. A long time ago I learned: "You can have it quick, you can have it cheap, or you can have it quality. Choose two." I'm going for cheap and quality, which means it's going to take TIME. *sigh*

I was just so happy to write in my blog instead of the book, and I wanted to let you know I was quiet with good reason! As a result I have to ask you one again to be patient, and believe me, you'll know when the book is available for sale!!

Friday, December 19, 2014

How to not "Miss" the Holidays with a Chronic Illness

The holidays are a particularly nasty time for someone with a chronic illness. We desperately want to participate in all the merriment, and every year something happens where I just fall out. This year I got a stomach flu right before Thanksgiving. One holiday missed. My father's recent stroke make it impossible for him to fly for a while (and lord knows I don't want him driving this far at his age...). I have too much pain to drive long distances (anything over an hour pretty much does me in), plus a night-time oxygen machine that is as large as a carty-on itself, and three times as heavy. It's all such a logistical nightmare, that visiting one another for Christmas never happens. Oh, sure, for my father's stroke I would have found a way... but he said, "Stay." Christmas just isn't important enough to pull out all the stops, which can make it difficult to get through!

In past years I've ignored the season, which is easy to do when there's no evidence of the season around you. Seattle was rainy that time of year, just as it was since October, and would be until May or June. It was easy to act like Christmas happened somewhere else, in a land far, far away. Now that I'm in Colorado where the main precipitation is snow, it's a little more difficult to be in "responsible denial." (Denial of certain specific facts, such as an upcoming holiday, to protect yourself from the sorrow of knowing you're too sick to participate anyway.) So I have to find other coping mechanisms.

As a compromise, knowing that I may not be well on the exact day on which the holiday falls, I expand the holiday to strech from December 21st (the traditional Yuletime) until the 4th of January, (what my mother called "the Twelve Days of Christmas"). That way I can celebrate any time that I feel good, and shrug off the days I'm not feeling well, and not feel like I've missed the holiday completely!

This year I have bells on my door that ring cheerily every time I run an errand. I splurged on Christmas lights (and repurposed some of my Halloween lights) that sparkle beautifully in the night. And, friends in-town and out-of-town are coming to see me, which I appreciate so much, because it makes it possible for me to have energy left to socialize, rather than me being exhausted by the mad holiday rush.

I love my family, so we can make it a celebration any time I visit, and it doesn't have to be a holiday. There are family traditions on different days (like our summer family reunions) that can be as special to me as Christmas or Thanksgiving, so it's okay that we're not able to meet face-to-face. We all call one another on the phone or Skype, so we still spread the holiday love around.

So this year, it feels really good to be a part of the seasonal celebrations that everyone else is doing. I love the lights that everyone in my neighborhood puts up. There are some amazing displays that out my little white strands to shame! But what matters is what I do for the season, and this year, I'm celebrating!!

Tuesday, December 2, 2014

Book One is Written! Thank You for Your Patience!

I know I've been hideously absent these past few months, but with good cause! The book— 50 Ways to Make Money While Disabled— is now finished, and the website is set to launch December 15th, so mark your calendars and come subscribe to our Launch Party over at http://makemoneywhiledisabled.com!

This work was inspired by my "Unicorn Sister," Jana (see the link, Medical Unicorn above, for that back-story), who gave me the idea, "Ya know, I bet I could come up with 50 different ways for disabled people to make money, and keep their disability benefits (if they're on those programs). I bet it would work even better for people who aren't limited by federal benefit rules." As it turns out, I've discovered over 150 ways for disabled people to make money, and I'm learning of new ways every day. Jana and I decided to break those jobs up into three volumes to start, so we could get you the first volume as soon as possible.

The book is divided into three parts: the first part gives an overview of the disability benefit system and things you will need to know before you start working if you're receiving Social Security Disability benefits. The second part is 50 money-making ways, with start-up considerations, disability concerns, and the approximate average hourly income for that money maker. The last part of the book covers topics raised in the first half more thoroughly, and includes information on self-employment and where to find resources.

More information in the upcoming post: So... When do I get to buy one?

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 rxlist.com, drugs.com, and WebMD.com/drugs/ 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...