Thursday, March 16, 2017

Taking Perceval to the Next Level

As my regular readers here know, I am a grudging member of The Working Poor in America. I work part-time and search for a fulltime job. A friend helps with paying my rent so I won't be evicted. About a month ago, I bit the bullet and launched a fundraising campaign at GoFundMe. This campaign has two purposes:
  1. To pay off the debt I have left from publishing my novel Perceval's Secret three years ago. 
  2. To raise the funds to publish Perceval's Secret as a paperback and launch it.
In the fall of 2013, I had a month-long Kickstarter campaign to raise the funds to e-publish Perceval's Secret. At that time, I raised over $3000, but because the campaign did not achieve the goal of $5000, I received none of the money.

I chose to take the risk of going forward anyway with publishing Perceval's Secret. All the expenses for the editor, book cover design, manuscript conversion to 2 electronic formats for publication, and marketing for the book launch went on a credit card. I used a $0 interest promotion offered by the credit card for the marketing expenses. Every month, I paid far more than the minimum payment, but the interest charged on the non-promo part really hurt my efforts. Then I reached the end of the promo period and the entire amount on the credit card was now earning interest for the credit card company.  I still continued to pay monthly more than the minimum.

Finally, last year, I transferred the balance on that credit card to another credit card to take advantage of another $0 interest promotion. That promotion would last 16 months. The promotion's end fast approaches. I'd like to finish paying off the credit card debt before the promotion ends so that I won't end up feeding the interest monster anymore.

While paying off the debt is my primary purpose for this GoFundMe fundraising campaign, if I manage to raise more money above the $5800 I need for that debt, I'll use the "extra" money to publish Perceval's Secret in paperback.

One person e-mailed me about 10 days into this fundraising campaign to inform me that I was "begging online." It disturbed me that he chose to look at it that way, even though it's probably a valid perspective. Others who have already donated to the campaign have chosen to express the perspective of helping a friend, a good cause, or giving an author a leg up. 

Perceval's Secret has garnered good to excellent reviews at Amazon and on GoodReads. I believe strongly in this novel and the 5-book series for which it is the first installment. Sales have not been what I'd hoped despite my marketing and promotion efforts in 2014 and last year (I was quite ill in 2015 and could not work as much on it).

I'd love nothing better than to have sales increase and keep increasing. So if you'd rather help out by buying Perceval's Secret, reading it, writing a review at Amazon or Barnes & Noble, and GoodReads, I'd love it! And especially if you encouraged others to buy and read the book, and post reviews. Go for it! To pay off the debt, I'd need to sell 2,850 e-books by the end of May!

Click on these links to buy Perceval's Secret:
Amazon Kindle US (but also available internationally on Amazon)
Barnes & Noble Nook
Kobo International

Click on this link to donate to the fundraising campaign:
Taking Perceval to the Next Level

For all those generous spirits who donate, I will post their names on the "Appreciation" page at the Anatomy of Perceval blog.

Also, if you are on Facebook, like the public The Perceval Novels Facebook page to find out about special fundraising promotions with "rewards" that I'll run through Facebook.

To all who choose to be generous, my heartfelt thanks! (And if you buy Perceval's Secret, I hope that you'll enjoy it!)

 

Saturday, March 11, 2017

Would You Speak for Peace?

A blogger friend, along with a group of other bloggers, has set up a blogfest/blog hop in order to promote positive news. We are living in a dark and negative time, especially in America which now has a man in the White House who thinks in terms of conspiracies and disasters, who calls the press "enemies of the people," and who routinely lies and flouts established law. He has also surrounded himself with like-minded people to serve his purposes.

This blogfest is called "We are the World" #WATWB. Its goal is for member bloggers to post positive news once a month, comment on each other's posts, and share each other's posts on Facebook and Twitter, and other social media. For any of my readers who are also bloggers, here is the originating post with instructions on how to sign up, along with the badge to put on your blog.

I have been thinking about this blogfest for the last few days, going back and forth in my mind whether or not to join in. I really like the goal. I like the purpose. It's not asking for a lot of posts per month. And if it helps to change the focus of thinking out there, I do support that. So why am I dragging my mental feet?

Perhaps my hesitation results from the difficulty I've been having lately writing anything. A Zeitgeist now exists that reminds me a lot of the despair and darkness Ursula Le Guin wrote in the third novel of her Earthsea Cycle, The Farthest Shore. In that fantasy, the Archmage Ged of Earthsea searches for the cause of the despair, darkness and forgetting that is spreading across the Archipelago. The cause turns out to be one man whose desire for immortality and what he does to achieve it have poisoned the world. Magic saves the world in that story, but there is no magic in our world.

Unless you believe that words have magic. Words that express positive ideas and draw attention to positive events in the world. Or that the emotional light that we all have within us can be used to shine through the darkness. Some call that light "love," others call it "compassion" or "kindness." Buddhists believe that we are all connected, that how we treat others will come back to us in kind in this life, not in another. What goes around, comes around. Treat others as you would have others treat you.

Sirius, or Dog Star, the brightest star
An especially bright human light shines through the Arts. While those who would live in darkness devalue the arts and want to defund them in an attempt to extinguish that light, it's important to let the light shine. I think if I would participate in the "We are the World" #WATWB blogfest, I would focus my attention and my writing on stories about the positive effects of the arts or positive stories about the arts. So perhaps you will see what I hope will be bright lights at this blog once a month on the last Friday of each month in the future.

Stay tuned....

Monday, February 20, 2017

The Successful Patient: What's it like to have a Chronic Illness?

We've all had the experience of acute illness -- a cold, the flu, food poisoning, or infection. These illnesses are short lived.  While there is no cure for the common cold, we know that our bodies have effective methods for stopping the virus in its tracks. It usually takes about a week, but then we're fine.

A chronic illness is an illness that will not go away. It has no cure. Modern medicine often hasn't a clue at what the cause is. In fact, in many chronic illnesses, the body and its immune system are the culprits. These are the autoimmune diseases and I've written about autoimmunity before. Treatments usually involve managing symptoms, or trying to stop a disease process to make the disease inactive (remission). But even if the chronic disease is inactive, it has not been cured and will return if treatment is stopped.

What's it like to have a chronic illness? In my personal experience, I've found that most people haven't a clue what it's like and so they make wrong assumptions, say inappropriate things, and ask irrelevant questions. Using myself as an example, I'd like to provide a glimpse into the life of someone with a chronic illness.

Daily Life

I wake in the morning and my first thoughts focus on how I'm feeling. When I stand, am I stiff? Do I have pain? Do I have nausea? Are any joints swollen? How's my balance?  I have a routine now that I follow to get into the day that includes some stretching to help alleviate the stiffness, moisturizing my mouth and eyes against the dryness, and taking my scheduled medications. It's important that I eat well during the day, i.e. no junk, no sugar, and follow my diet to insure that it remains quiet. It's also important that I eat by certain times due to my medication schedule.  I have a medication that must be taken on an empty stomach twice a day. The morning is no problem, but the evening can be. In the morning, I also have a schedule for the different meds before and after breakfast. By taking my medications correctly, I increase my success at managing symptoms and being able to go through my day well.

What happens when one of the diseases flares up? Well, I just had that happen with my Interstitial Lung Disease (ILD) which was triggered by a new medication. When the ILD flares, I can be quite ill and it's best if I stay home and take care of myself. When the psoriatic arthritis flares, I'm in extreme pain from the affected joints. Sometimes pain meds will stop that pain or at least dull it, but sometimes they have no effect. It's really hard to walk when the joints in my feet are inflamed. It's been years since I've had a flare of the Sjogren's, and I'm thankful for that. It can affect my inner ear and balance, my swallowing, and can give me a mighty sinus headache as well as swell my salivary glands. Not fun. People see the swollen glands but otherwise, the only chronic illness I have that people actually see is when my psoriasis flares which is a prominent, red, pustular skin rash on my scalp, along the hair line, on my arms, back, legs, palms and feet. I've written about dealing with the fatigue that goes with autoimmune diseases here and here.

So I have chronic illnesses but rarely are visibly sick. I've heard comments such as "You don't look sick" or "You're faking it -- you look fine." Doctors and nurses have told me that they can tell when someone is faking it in a variety of ways, especially in the person's behavior. The average person doesn't have that expertise. What I usually do in that situation is to explain the disease that is flaring, why I look "fine," and why I'm not fine. Most people with chronic illnesses are not visibly sick. Please don't assume that if someone doesn't look sick that they aren't.

At work, I must pace myself in order to conserve energy. I take with me whatever I need to help me deal with symptoms that could interfere with my job. This includes nasal spray, eye drops, throat lozenges, my inhaler, and OTC meds that help me digest food. I do not talk about my chronic illnesses at work, unless I'm out sick with one. Very few of my co-workers know about them. And as long as I take care of myself, there's no reason to bring them up. As long as I take care of myself, I'm rarely out sick.



Doctors and Medications

I have a medical team not just my primary physician. In order to stay ahead of my diseases, I see my doctors usually every 3-4 months when my diseases are active, and every 6 months when they are not. Most of my medications are taken orally, but I do take two that are administered by infusion in a doctor's office, and one by intramuscular injection that I do myself.  My infusion appointments occur every 8 weeks and every 12 weeks.  If I'm lucky in scheduling, they are both due at the same time, but usually they're not.

It's important to be committed to keeping medical appointments and to take medications according to instructions. Deviating from this can cause diseases to flare or other problems.  I know that I do as well as I do because I keep my medical appointments and take my meds.

In an effort to have some control over my body and health, I also have tried alternative therapies. Often with my doctors' encouragement. I've tried Reiki, massage therapy, Tai Chi, Falun gong, meditation, and different kinds of physical exercise. I've also attended support groups for people with the same diseases I have where discussion topics have included alternative therapies, diet, holistic approaches, and chiropractic medicine. I've found Reiki, Falun gong, meditation, and physical exercise the most helpful to me.  I've also developed my own diet of safe food that doesn't cause a flares. 

Medical Insurance Companies

Medical insurance is a business, and people who work for insurance companies are tasked with saving the company money, not paying it out. So medical insurance companies do not like people with chronic illnesses because they submit the most claims and cost the insurance company the most money. So insurance companies will play a passive-aggressive game of stalling and using bureaucratic language that confuses rather than clarifies. Medical insurance companies are not your friend, especially if you have a chronic illness. Don't believe any of the niceties they include in their correspondence or brochures, their advertising or through customer service. When they claim to be looking out for the patient and the patient's health, that means that they are looking out for themselves and their bottom line, not the patient. Everything they do is to save money for them.



In my experience both pre- and post-ACA, dealing with insurance companies has exacerbated my symptoms and hurt my mental health. It's important to stay as positive as possible when you have a chronic illness, and there's nothing in the way insurance companies treat their customers that is helpful to staying positive. They claim that they are not practicing medicine, and yet they also claim in their written materials and on their website to be actively determining if a treatment or medication will be effective for a patient, even after the patient's licensed physician has already made that determination. It's all about money, folks. It has nothing to do with the welfare of the patient, but how much the patient will cost them.

For someone with a chronic illness, it can be almost a fulltime job to deal with medical insurance companies. On top of everything else, of course. Our current system definitely needs reform. The ACA was a solid beginning, but what the Republicans are proposing now would set patients and doctors back 20 years to a time when medical insurance companies had complete control and power, especially over whom they will insure and how much they'll charge.

Chronic illness is expensive. If I did not have medical insurance, I would be dead because I could not pay for all the medications, the hospitalizations, the clinic and doctor visits out of pocket.  No one can.

Depression

Depression is a side effect of chronic illness, and can be serious.  It is unbelievably difficult to live with pain, with extreme symptoms, day in and day out. More often than not, doctors run out of treatment options or insurance companies refuse to cover the treatments doctors have prescribed. The anger and frustration a patient feels about all these things needs to be expressed not internalized. Anxiety about the future is also a common occurrence with the chronically ill.

Depression has its own set of symptoms that need to be treated. I took an anti-depressant for years for anxiety as well as went through talk therapy. I'm no longer doing either. But that doesn't mean that the depression and anxiety cannot recur. People who live with chronic illness, whether one or multiple, are incredibly strong but they still need emotional and psychological support from family and friends when they're not feeling well.

Finally

No one wants to be sick. I know of no one who enjoys having a chronic illness. And the thing is, chronic illness occurs whether or not a patient has been healthy all her life, takes care of herself, or not. The patient has no control over whether or not the chronic illness hits her. A great deal of medical research is going on right now looking at the genetic component of chronic illness, figuring out each disease's process within the body in order to develop new treatments and maybe even to find a cure. Until then, I and all the millions of people with chronic illness in this country power on, doing everything we can to take care of ourselves, and ignoring the people who are ignorant, insensitive, and boorish toward us.


May you never, ever have to deal with a chronic illness.


 

Friday, February 10, 2017

Open Letter to Donald Trump: Checks and Balances

Welcome to American Democracy! Not a Kingdom, not a Dictatorship, and not a Communist Police State. A democratic Republic. Our American Democratic Republic has been in existence, functioning well, for much, much longer than anyone alive today. Thanks to strong and real leadership, the Civil War did not destroy the country but showed us where we needed to improve to honor those who fell during that war and ushered in years of beneficial change. But how could the men who wrote our governing documents have known how to create our democratic Republic. Many were motivated to create a government that would insure freedom for its citizens, rule of law, equality under the law, and a representative government -- not the monarchy that they had suffered under.

Most adult Americans today studied how the Founders feared any one part of government gaining too much power, feared a monarchy in which the people had no say, and were determined to insure freedoms that we take for granted now. Freedoms that they did not necessarily have. Freedoms that anyone living in a dictatorship can tell you they want...desperately.

To look at a business analogy: there are some companies that are run as a dictatorship with financial and operational secrecy, in which employees must do as they're told whether or not they agree, are not encouraged to speak up in dissent, are not encouraged to offer new ideas, the management style is by fear, negativity and the suppression of innovation, and there are no checks on the power at the top. Whatever the dictator says, goes.

Then there are companies that have Boards of Directors, shareholders who share in the risk of ownership, that operate with financial and operational transparency, that encourage innovation and their employees to speak up, share new ideas, and are open and positive with a management style that supports employees and productivity, and there are checks on the power at the top because power's not consolidated as in a dictatorship.

The American Constitution written by the Founders, voted on by them and those they represented, provided instructions on what the American government would be. Amendments have been added over the years after being voted on by Congress and the States, and the first 10 Amendments, the Bill of Rights, outline the freedoms and rights of the American people guaranteed by their democratic government. Described within the Constitution is the structure of the American government, its processes that will best achieve results in a government by the people, for the people and of the people.

You vowed, Trump, when you took your Oath of Office to uphold and defend the Constitution. It is your duty now, part of your job -- maybe the most important part -- to protect and insure our democracy, democratic processes, and freedoms, to enforce and uphold the law. When you took your Oath, you were also accepting the Constitution as our governing document, and accepting the laws contained within it.


It is the law of the United States that our federal government has three branches: the Executive, the Legislative, and the Judiciary. The Executive and Legislative branches work together to write and pass laws, and uphold the rule of law in this country. The Judiciary's job is to insure that those laws do not violate the Constitution. In addition, the Legislative branch also checks the actions of the Executive branch. The three branches balance each other out as well as work as checks on each other. That's their job. They serve at the pleasure (and the vote) of the American people whom they represent, except for the Judiciary. This branch is not political, not elected, and must be impartial.

So the President, the top person in the Executive branch, serves the American people -- ALL of them, not only the people who voted for him or her. A President ignores his bosses at his peril.

The Capitol where Congress works
 Let's take a recent example from your life: the immigration ban on seven specific countries that are Muslim majority countries, but this ban does not include all Muslim majority countries since it leaves out Egypt, Saudi Arabia, and Pakistan for example. You signed an executive order implementing this immigration ban to last for 90 days for some people, 120 days for others. You did not run this order past any of the government agencies who'd be charged with enforcing the ban or who are responsible for determining the legalities of it or how it might not be legal. Your stated objective was to protect America from terrorists, a good and valid objective.  Too bad it was so poorly done, focusing on countries from which terrorists have not attacked us (and for which the previous President had already put into place vetting orders that would protect, and has protected, the country). One thing the President cannot do is take such a serious action just for show, i.e. to say that he's kept a promise, for example.

The "checks" kicked in immediately, beginning with regular Americans protesting this order at American airports. We have Freedom of the Press guaranteed by the First Amendment, and they provide an important check to government abuse of power. The Press was all over this order immediately. Finally, the Judiciary, responding to legal requests in different forms, put the kibash on your executive order, checking your power as it should, and has been reviewing appeals ever since. Will it make it to the Supreme Court? Probably. We have an 8-member Supreme Court right now -- it should have 9 members and would have had if your political party had not stonewalled your predecessor's nominee -- which means that it could uphold the Appeals Court ruling because it might not have a majority either way.


U. S. Supreme Court
 Welcome to American Democracy!  When you campaigned for president, one of the first things you needed to do was educate yourself thoroughly about the system of checks and balances, what the role of the President is, how to work with the Legislative branch (I suspect you're going to butt heads with them in the future, too), and especially the role of the impartial Judiciary. You may be president, but the presidency is not you, Trump. It is your job to serve the American people, all of them, and so far, you have really failed miserably and it's nobody's fault but your own. You are not the government, you are not the boss anymore. You are the employee of 311 million or so people.  We expect you to uphold the rule of law, stop obsessing over tiny things, and focus on the job.

The American democratic republic is not run like a dictatorship business. You want results? I repeat: do you really want results? Then you need to master the democratic processes not ignore them. When you ignore them, when you dictate instead of propose, when you dictate instead of seek to build consensus, the Legislative branch is going to be all over you like white on rice.  Because they have their jobs to do too, and they have an election coming up in 2018 and need to pay special attention now to what their constituents want. And they took an Oath of Office to uphold, defend and protect the Constitution, too.

Checks and balances, Trump. It's not about you personally, and the faster you get that, the faster you'll be able to move on and get something done. Checks and balances. They are what make American democracy great, not you or any one person.




Wednesday, February 1, 2017

What Makes a Wonderful Neighbor?

While a stereotype of a "good neighbor" does exist, I've been thinking a lot lately about what makes a wonderful neighbor. As a kid, I grew up in a neighborhood where everyone watched out for each other, and it was perfectly safe for kids to play outdoors on their own anywhere. I found out years later at my father's wake that one neighbor had kept an eye on me when I played outdoors by myself, and had commented to me that she had especially enjoyed my singing. I didn't see her, and she hadn't wanted me to see her. Back then, the adults wanted their children to feel safe and secure playing outdoors on their own, exploring their immediate world, and walking to and from school. The adults wanted to feel safe and secure as well. Doors weren't locked at night until I was in middle school, and I never had a key to any of our house's doors.

As an adult now living in an urban apartment building, I think back fondly but realistically to my childhood and the neighbors we had. We knew them almost as well as we knew our cousins. And they knew us. There was communication among them, just as there was among the kids. We wanted the best for each other which didn't mean there weren't disagreements and occasional feuds. The adults taught us to be considerate and respectful of each other. Loud noise after bedtime? It'd only happen once because the police would arrive and issue a citation for disturbing the peace. If my parents weren't home when I arrived after school, I could go to any of the nearest neighbors to wait for them if I wanted (I usually just played outdoors). Neighbors picked up newspapers and mail for a family who'd gone on vacation and watched their house to make certain it remained secure. Were people just nicer to each other back then? I don't know, really, although it does seem so.

In the last few weeks, there's been a lot of loud noise after 10 p.m. in the building where I live. Someone actually posted a note in the front foyer about it, asking everyone in the building to be considerate and respect their neighbors who had to get up really early to go to work. I kept thinking, gosh, isn't it amazing that it even has to be said. To me being considerate and respectful is a given. But I guess there are people now who haven't been brought up to be considerate and respectful of others, to be aware of how their actions affect the people around them, or even that apartments are NOT soundproof no matter what they were told when they signed the lease. And people in apartment buildings no longer cultivate relationships with their neighbors, even if it's only to do each other favors like picking up mail when on vacation. (Mail? I still receive a lot of mail but I can imagine much younger people who don't.)

Canadian Prime Minister Justin Trudeau (Photo: The Canadian Press/Sean Kilpatrick)
And then there's the fact of countries being neighbors, as is true for Canada, the U.S., and Mexico. Americans have always been able to travel easily to Canada and Mexico, and Canadians and Mexicans have traveled to America. We share a continent. We should want each other to do well in the world and be supportive of each other, even if we have disagreements. And like any wonderful neighbors, we're considerate and respectful of each other. At least until recently.

American presidents have worked to cultivate a good relationship with our neighbors. In the past, there have been disagreements, even wars, but we have survived as neighbors. If we want them to be good neighbors to us, then we need to be good neighbors to them. It pains me deeply the way President Trump talks about Mexico, Mexicans, and tries to bully their President. I've noticed that he hasn't done the same with Canada which does make me wonder. If nothing else, Trump is an equal opportunity abuser. He is not a good neighbor. (Although I can hear him now: What da ya mean, I'm not a good neighbor? I'm the best, the greatest neighbor you've ever seen!)

Mexican Friends
Is his bullying bluster a result of his ignorance of how to conduct diplomacy and friendship among nations? Probably. But instead of being so loud, inconsiderate, and disrespectful, he'd earn more respect and friendship by being quiet, and seek out mentors who know what he doesn't so he can learn. But that's not Trump. He's not a good neighbor because he's unaware of how his actions affect other people (usually badly). He's only aware of his own desires to be the most powerful, most in control, and the best at everything that anyone has ever seen, and the problem is that he thinks he's already all of those things. I definitely would not want to be his neighbor. I'm sure he'd expect everyone else to do him favors while he never returned them. And he'd be loud far into the night, not caring the someone next door needed sleep in order to get up at 4 a.m. to go to a job.

Will Mexico and Canada decide that they no longer want to be wonderful neighbors to us? America and Americans would be stupid to lose our good neighbors. Especially when they can help protect us against terrorists. How? By the way they protect themselves against terrorists.

We share the same continent. We are all in this together.