Celebrating

My best friend did an analysis of my writing on Lyrica v. not on it. I shared some of her results in a blog post. On Friday night, she got her grade. It was a 3-man (well woman team). They aced the paper which was for big data analysis.

Not only did they ace it, their professor recommended they do some more polishing and consider publishing the paper. I’m hoping when she talks to her partners they agree to work on it a little more and publish it.

Interestingly, her analysis did support one of my chief complaints. It felt like I had aphasia while on Lyrica and she found the books I wrote while on it, had far less variety in my vocabulary.

I am so proud of her and her hard work. I hope her partners agree to polish and publish. I was surprised and pleased when she asked permission to do the analysis. I know she picked it because she knew I’d struggled so much for all those months. Knowing that they knocked it out of the park, makes me even happier for them.

Analysis of D&R

I mentioned a day or two ago that someone had analyzed all the books in D&R. Today, I’m going to discuss some of the results of that analysis. There was a stance from the beginning of the project that Lyrica and Gabapentin had affected my writing. Both the publication (so slow) and the actual writing of them. Meaning there was quite a bit of comparison built in to the project.

One of the first things noticed was that the key words, the words that showed up most often could identify the book. The book Butchered Dreams had the iteration of Butcher, Butchered, and The Butcher, more than any of the other books in the series. The words Summoning and Summoned showed up more in Summoned Dreams than any other books. This was to be expected, but it was still neat to see it.

For books 1-11 and 14, I averaged 7,000 unique words per book (excluding names). And the readability score (how hard is it to read) were all around 5. For Flawless (book 12) and Demonic (Book 13). My unique words went down significantly to 5,500. And the readability score went up to a 7.1.

I prefer the lower readability score. I know that sounds strange, but one of the best compliments I’ve ever received on the series came from a medical examiner. He told me, “I don’t know anyone who can explain medical stuff like you do in your books.” Essentially, he was congratulating me on being able to get across my ideas in a way that were easy to understand, particularly the state of remains. Despite the fact that I am not involved in the medical field, I try to keep my deaths as realistic as possible. A lower readability score is indicative that nearly everyone can understand what I’m writing about whether it’s the goo that seeps out between the layers of skin when you get a deep cut or the results of a severe impact by a blunt object to the chest.

However, having fewer unique words is not a good thing. It indicates I repeated myself a great deal and failed to use a wide vocabulary while writing. I’m not sure this surprises me. I often complained it felt like I was struggling with aphasia while on these nerve pain medications. And my brain just worked slower and had to work harder to find thoughts, keep plots, and other things.

Furthermore, the books were considerably shorter and took longer to write. One would think that being shorter would mean that the readability score would be lower, but apparently, I didn’t express myself as thoroughly and effectively on Lyrica, as I did off it.

The time between books tripled on Lyrica. And my overall ratings (number of stars) was lower for these two books. Interestingly, from my own analysis of it, I had far fewer unique situations. My normal array of subplots and deaths, just didn’t happen in those 2 books. Even more bizarre, The Dysfunctional Mob is more in line with D&R than either Flawless or Demonic Dreams.

So, I wanted to check readability and unique word score for Ritual Dreams. I wrote half the book on Lyrica and half of it off. The first 13 chapters have a higher readability score, than the last 14. And the first 13 took longer to write than the last 14 chapters. The unique word score is also back to my average, but only because I seem to have expanded my vocabulary in the last 14 chapters.

The conclusion, Lyrica and Gabapentin really did hinder my ability to write.

Eventually

When you wake up one day and learn your entire world has changed in the blink of an eye, it’s difficult. It’s difficult to accept. Difficult to deal with. You mourn, you cry, you curse, you scream, you research, you make a plan, you pitch the plan, then you make a new plan, and every day, you think “it gets easier,” but you aren’t sure when. So you wait, and you wait. And you wait some more. Then you cry some more, curse some more, begin grieving all over again, and remind yourself it gets better… eventually.

After 17 months, I’m still going through this process. If it sounds like I’m talking about the unexpected death of a loved one, you’re close. Unfortunately, that unexpected death was my own. I may not have physically died, but parts of me did. And until you’ve gone through this, you can’t know, you can’t truly understand what it’s like to wake up every day and wonder when does the mourning end? When can I take off the black veil and be me again? Oh, yeah, I can’t. That person died.

They were replaced by this crippled, pain riddled body that doesn’t smile very often anymore. Doesn’t want to feel anymore, emotionally or mentally or physically. You never know what’s going to trigger this spiral back into the murky depths of loss, depression, anger, hate, and disgust.

For me, it was a doctor’s appointment with J. On the morning of 21 February, J and I arrived at his appointment to get the stitches taken out after his surgery. I was sitting in the lobby, waiting. J was talking to someone he knew. I heard this shaky voice talking loudly. A woman’s voice. I turned to look, because she said “They call it the suicide disease.”

As I watched, this frail, little old lady was saying these words to someone I presumed was her daughter. I’m not good at guessing ages, but I’d say she was 70s or 80s. I am intimately familiar with that disease. I turned in my chair and said “are you here for CRPS?” I asked. Both women looked surprised. The older woman said “Yes, I’m seeing Dr. Wonderful, I was just diagnosed. Last winter, I fell and broke my arm and now it hurts more than it ever did when it was broken. Are you familiar with it?”

It was my turn for my voice to shake. “Yes, I was diagnosed with it in my hip last year, but I’ve had it in my right arm for 25 years.”

“Does it get better?” Her companion asked. Does it get better? No. You have good days and bad days and the bad days outnumber the good. That’s why there’s a 98% suicide rate for sufferers with CRPS within 10 years of symptoms starting. She was there to get a referral to a specialist, they were hoping to send this older lady into remission with ketamine treatments and she was seeing Dr. Wonderful to get the referrals to the specialist in St. Louis that does ketamine treatments.

But you can’t tell someone “No, it doesn’t get better.” It’s a battle to wake up everyday and get out of bed and know that within 10 or 15 minutes of your day starting, you’ll be ready to cut off body parts. That you’ll never get a good night’s sleep again as the pain wakes you up, sometimes crying, sometimes screaming because the pain has gotten so bad while you had your eyes closed.

You can’t tell them that sometimes, when you close your eyes as the last pain pill of the day kicks in, you hope you don’t wake up in the morning. Or that the treatments suck almost as bad as the disease itself. You’re going to have needles stuck into you, you’re going to have nerves numbed and that process is going to make you yelp or whimper or cry… I’ve even heard people scream as the needle found the right nerve and I’ve clenched my jaws so tight while they dug for that awful nerve that I broke a tooth, but I didn’t scream and no one saw the tears that leaked out.

And if you are lucky, you’ll get some relief from the needles, but it won’t be pain free, it will only be less pain. You can’t tell them that the epidurals hurt like hell and may or not work and even those, won’t make you pain free. It will just take the edge off the pain for a couple of hours… Unless you’re unlucky and you’re like me and those nerves never went numb after the digging of the needle in my back and the finding of the nerve that shot pain from an area near my right kidney down to my toes.

Just like you can’t tell them, that maybe not today or tomorrow or next week, but eventually, they are going to hurt themselves again. It may not be a major injury like a broken arm, it may just be a small cut from a thorn or the slip of a knife during vegetable chopping or accidentally burning yourself on a hot oven and then the pain will spread to the other arm. Or a leg. An ankle. A foot. A shoulder. Your spine. Or worse, you’ll stand up wrong and tear the cartilage in your hip joint and then, there it is in your hip. Then the other hip, because it’s hard not to limp when it feels like your hip is broken, but you force yourself not to because it puts stress on the opposite hip and you know that’s just this disease waiting for you to make a wrong move.

What words adequately describe a neuropathic twitch that isn’t exactly painful, but is a little more intense than discomfort? Or a muscle spasm that makes you feel like your body is trying to rip itself to pieces? Or that if the alternative treatments with the needles and nerve blocks don’t work, she gets to look forward to having a spinal stimulator put in or a pain pump and that if she is forced to rely on oral opiates, her life will suddenly revolve around when she can take her next pill. Or tell her, if you don’t have high blood pressure and problems with tachycardia now, it’s probably only a matter of time. Or that she may slowly begin to feel isolated and bitter?

Or that all those people mean well when they tell you that you just need to move more or try this diet or try this treatment, but they don’t and can’t understand, not really. Just like you will slowly learn to dread these phrases “I have lupus”, “I have rheumatoid arthritis”, or “I have fibromyalgia” and that once in a while she may want to scream in their faces “Then consider yourself lucky!”

Nor can you find the words to explain “Yes, CRPS is neurological, but there’s not another neurological disease like it on the planet. There’s not another pain disease on the planet like it. If there was lupus, rheumatoid arthritis, fibromyalgia would be nicknamed “the suicide disease” too. And they too would have a 98% suicide rate for sufferers within 10 years of the onset of symptoms.

Just like you can’t tell a stranger “try marijuana, try CBD oil, try the opiates, try the physical therapy, beg for the ketamine, change your diet, try the torturous needles and if any of them brings your pain down from ‘I wish I would die to maybe I can get through today’ then use it to the maximum benefit to you regardless of what anyone else says or thinks.”

And the entire time, I’m sitting there pleading with the universe that this appointment goes fast, I haven’t taken my morning pill yet, because I didn’t want J’s doctor to look at me and wonder if I needed an intervention. Because doctors can tell and this doctor has never treated me, he doesn’t know my hip always feels like it’s been pummeled with a sledgehammer. I look “fine” unless you pay very close attention. I have a slight limp that I can’t shake, but it isn’t so pronounced that everyone immediately notices it, even doctors don’t usually notice it until they’ve seen me a half dozen times or so.

Does it get better? Eventually. I don’t know how long that takes, I’m still waiting for eventually to become now.

Procrastination Doesn’t Pay

As long time readers of my blog will be aware, when CRPS spread to my right hip in June of 2017, I had to give up darts. Not just playing, but tasks associated with the administration of it. I felt bad, but I didn’t have a choice, I had to step away.

One of the problems with Lyrica was that I had issues staying focused among other memory, concentration, and comprehension difficulties. Anyway, so I told my dart league in September of 2017 that I had to be done with the administration as well as playing.

About Christmas, I got a frantic message asking me to make tournament flyers for the association’s February tournament. Now, the tournament had been scheduled for over a year at this point, but I agreed to do it. The tournament took place February 15 – 17. We had friends stay with us, there was a lot of snow and some slick roads, but there was still a good turn-out.

The morning of the 16th, I wake up, wander into the dining room to be greeted with “I don’t know what you did, but the payouts for one of the evens is a mess.” Okay, how so, exactly? Apparently, it was a moved event and the payouts were left from the even that was there previously. So yes, the payouts are wrong. This is a huge issue.

But I told people to look it over multiple times. I pay editors and use 10 beta readers per book to catch errors. And I’m not particularly good at catching my own mistakes. They were given plenty of notice that I couldn’t/wouldn’t be doing it. They had more than a year to get the flyer made and there was a template available. And one person surely could have taken ten minutes to review the flyer and say “Hey, there’s an error here” instead of waiting until the tournament started to look at it.

Especially since they knew I was having tons of problems with my brain on Lyrica. I had explained the side effects of my disease as well as the medications I was on when I told them I couldn’t do it anymore.

When I was told of it, I had just woken up and this shit has spread to my other hip. Mornings and sleeping have gotten worse for me as a result. My response was “Well they were told it needed to be proofed, why didn’t they notice it when they made up the payout envelopes?” “Why didn’t someone look it over in the 2 months it was available before the tournament? Why didn’t they have someone with a brain do it?”

Herd Immunity

The measles outbreak in Washington keeps getting more distressing. Currently, there is a small selection of doctors willing to give exemptions to parents just because. I believe these doctors should be punished, because they are risking a lot of lives. There are currently 325 million people in the US. 3% of them are not immune to measles despite vaccinations. Meaning there are more than 9 million Americans that don’t get measles simply because herd immunity prevents measles.

Since 9 million is a lot of people to wrap your mind around, we’ll think about it in smaller terms. Between Facebook, Twitter, my blog, and my newsletter, I have roughly 2,000 followers. That means 60 people who follow me are not immune to measles despite being vaccinated.

And as I’ve said before, measles is one of those lovely diseases that becomes contagious before symptoms begin to show. This means a child with measles can infect people around them as early as 7 days before they start having symptoms. 7 days is a long time to spread measles without knowing you have it.

This becomes an even scarier thought when you consider how many people a child can come into contact with before showing symptoms: school, daycare, grocery stores, after-school activities, and family outings to the park.

This early exposure is why we have outbreaks of diseases like influenza every year. Once a person is sick, everyone avoids them. Until then though, they are exposing a lot of people to their germs. Influenza and viral pneumonia are usually only contagious for a day or two before symptoms show and neither is a very hearty virus, they don’t do well when exposed to the elements. Unlike measles, when exposed to the environment, influenza usually only survives a few hours. Measles can survive for a day or more on surfaces even in cold weather and rain.

However, because 89% of people in the US are vaccinated against measles, even when exposed to it, they don’t get it. Unfortunately, that percentage has been dropping since 2002. In 2002, the CDC listed measles as eradicated. Enough of the US population had been vaccinated against it that outbreaks and epidemics were unlikely. Cases still popped up, especially among unvaccinated populations, but we weren’t in fear of major spread.

But as I said, that percentage has slowly been dropping. As of 2018, we’d dropped to only 86% of the US population being vaccinated against measles. It doesn’t sound like a lot, but it means 9 million children have not been fully vaccinated against measles in just 16 years. And three percent is enough to significantly weaken herd immunity.

Now, the measles outbreak in Washington might be spreading. It made the news when it was 33 cases of measles. Now the state of Washington has more than 100 cases. Oregon has 22 cases and Idaho has 15 cases. These lower numbers in Idaho and Oregon aren’t alarming by themselves, but between 2016-2018 Oregon only had a total of 31 cases of measles. Idaho had 12. And the same time period in Washington had 37 cases. In two months, Washington has seen triple the number of cases in 2019 as they saw in the three previous years combined.Not surprisingly, Washington has one of the lowest vaccination rates in the country. It also has a larger population than the state of Oregon and Idaho combined.

For people like me, without measles immunity, Washington might as well be a third world country. Worse, most people who don’t have immunity don’t know it. Unless you work somewhere that requires you to have a titer test for measles (some health care facilities require them) or you get measles, you may not realize you’re part of the more than 9 million people that is not immune to measles.

I know, only because I got measles and this resulted in the University of Missouri demanding new MMR vaccinations followed by a titer test when I was accepted to attend college there. The only reason I haven’t battled measles multiple times is because of herd immunity. To people like me, herd immunity is literally a life saver. The mortality rate for measles is higher in adults than children. But if you don’t know you aren’t immune, and you are exposed to measles as a result of say a vacation, then you are taking measles back to your home, where 3% of the population is not immune.

Besides, it should be terrifying anytime the prevalence of a disease triples. This is how the H1N1 pandemic started in 2009. A pandemic is a global outbreak of a disease. It isn’t just Americans that suffer from 3% of the population not having immunity. Nearly all Western countries require vaccinations. That 3% applies to the population of the UK, Germany, France, Italy, so on and so on. In countries without vaccination protocols and/or where the population doesn’t have easily accessible vaccinations like Mexico, India, China, Egypt, and tons of other countries, the chances of outbreaks for measles is much higher and worse.

Measles has an 8% serious complication risk for children. This means 8 out of every 100 children that catches measles will suffer brain damage, hearing loss, digestive issues, lung issues, and death. In adults, it’s about 20% that suffer severe side effects from measles.

Going back to my original example, this means of the 60 people that follow me that don’t have measles immunity, 12 of them will either have hearing loss, brain damage, lung damage, problems with their digestive tract, or will die as a result of catching measles. On a national scale, if measles becomes an epidemic, more than 2 million people could suffer these symptoms or die as a result of the loss of herd immunity. This is especially difficult for someone like me, I have a chronic disease that affects my immunity to every day bugs, because the nerves in my digestive tract are hyperactive due to CRPS, I don’t have a good immune system. A poor immune system battling a disease it already can’t handle, makes me very high risk for death and the other serious side effects as a result of measles.

Herd immunity is defined as 89-95% of the population being vaccinated against a disease. It is that number the prevents outbreaks, epidemics, and pandemics. That 89-95% has immunity to the disease. If they catch something like measles, their bodies recognize the disease and immediately begins pumping out antibodies to kill the virus and dead viruses aren’t capable of causing illness.

Then there is something called partial immunity. Some portion of our population regardless of vaccination status is immune to measles. Most of them had a very mild case of measles previously and so when they are exposed to the virus again, their body begins to make antibodies to kill it. They usually get sick, but only have a mild case and they aren’t as contagious as those that do not have immunity.

However, it is the 89-95% that keeps the rest of the population from getting sick. Partial immunity means you probably won’t spread it to every Tom, Dick, and Harry that crosses your path, but that complete immunity population that received their immunity via vaccines are incapable of spreading the disease at all. Even if they got an extreme form of measles and got sick from them, their antibodies are killing the virus fast enough to keep them from being contagious. They are the ones that keep the 3% of us without immunity from getting sick, along with the 8% or so of Americans that are unvaccinated against measles. While 3% of children born after 2002 are not vaccinated against measles, roughly 11% of the population was not vaccinated nor had immunity to measles even with vaccinations in 2002. Only in 2014, did this 11% result in more than a hundred or so cases of measles in the US. In 2014, there were 616 cases of measles in the US, the highest number of cases in a single year since the 1980s.

But as I said, our vaccination rate has dropped from 89% in 2002 to 86% in 2018. We no longer have herd immunity to measles. Without it, every outbreak runs the risk of becoming an epidemic. This is especially disturbing given a new study coming out the UK. Between 2015 and 2018, whooping cough cases increased by 7%. The US saw a similar rise at 6%. Most of us have been vaccinated against whooping cough (pertussis). However, like measles, there will always be a small portion of the population that despite vaccinations, is not immune. As immunization rates have fallen in the US and UK, pertussis cases have risen and like measles, if you have been vaccinated, there is no reason for you to suspect you aren’t immune, until you get it.

Interestingly, most anti-vaxxers don’t realize they are benefitting from herd immunity. If you don’t vaccinate your child against measles, there’s a good chance your kid will still probably never get it, because we have herd immunity. It isn’t until your child tries to travel overseas that they’ll find their lack of immunizations a serious problem. Even with my titer results, I was forced to get a completely new set of MMRs in 2006 when I decided to travel to Germany. And I was told by my doctor that he would not sign off on the special immunization form I needed if I didn’t get them. I got them. I didn’t get measles, but again, Germany enjoys herd immunity from measles. When I jokingly told my doctor I was going to move to Belize, I was told it would be inadvisable, because I’d probably get measles and at 39, my risk of serious complications was high.

Correlation and Causation

I used to work in public health and then I got a history degree. As a result correlation and causation are very important to me. And just like when I was 20 years old, working on cancer cluster research it boggles my mind when people don’t understand the difference between the two or confuse them.

Correlation is when two things happen simultaneously that may or may not be related. Causation is when something happens and causes something else to happen.

For example, everyone who gets cancer drinks water. Does this mean water causes cancer? No, it means people need water to live. The two correlate, water isn’t the cause. And before you argue that not every person on the planet drinks water, yes they do, it may not look like water or taste like water, but it is still water. It doesn’t matter if it’s tea, coffee, soda, beer, Kool-Aid, fruit juice, V8, Gatorade, sparkling water, tap water, or distilled water, it’s all water. Even milk and wine is primarily water.

Now, if you live somewhere like Herculaneum, Missouri, there is a very, very high chance that drinking the water will give you cancer. Because Herculaneum, Missouri is a superfund site: a location where the soil and groundwater has been contaminated with toxic chemicals due to improper disposal of hazardous materials.

But most of us don’t live near a place like Herculaneum, Missouri and the water isn’t going to cause us cancer. It’s a correlation. The two things happen simultaneously, because people need water to live and people get cancer.

Here’s another correlation, that does seem to be completely random. Nearly everyone I know with CRPS owns a dog. When I first started experiencing pain and problems with my hands and forearms, I owned a border collie named Frisky. Did Frisky cause my CRPS? No. I have two possible injuries that caused my CRPS and neither was dog related: injury one I stood up on a teeter totter and the person on the other end jumped off, I broke my wrist. Injury two I accidentally shoved a woodburner into my thumb and caused a 3rd degree burn right down to the bone. Either of these are possible causes. Burns and broken bones are the most common triggers for CRPS. Here’s the shitty part of that, they aren’t the only triggers. You can develop CRPS after spraining an ankle, breaking a nose (no bones in the nose), having a surgical procedure, or childbirth. There is a correlation between owning a dog and having CRPS, but not a causation. And plenty of people own dogs that never develop CRPS.

False and misunderstood correlation and causation is the reason there’s an outbreak of measles in the state of Washington. There is a correlation between vaccination and autism. Vaccinations became more common in the 1950s and 1960s. Autism was diagnosed for the first time in 1933. However, it did not become a “common” diagnosis until the 1980s. The diagnosis of autism, has nothing to do with vaccines and everything to do with our understanding of mental disabilities and the desire to differentiate and define them better.

I’ll give you an even clearer example of misunderstanding of the two. 1952 is the first year that heart disease was the number one killer of adult Americans. There is a definite reason for it, but not a cause. We didn’t suddenly have a massive increase in the number of people dying from heart disease. From 1870-1951 the number one killer of adult Americans was tuberculosis. In 1949, we found the first antibiotic that cured tuberculosis. In 1950 and 1951 the use of streptomycin to cure TB became widespread across the US, Canada, and UK. As a result, 1952 is the first year millions of Americans didn’t die of tuberculosis. There wasn’t an increase in cases of heart disease, there was just a decrease in the mortality rates of TB.

However, if you look at the data searching only for causation, it appears curing tuberculosis made heart disease more deadly. More confusingly, correlation can mask causation. When you start searching for a cause, a strong correlation can be misleading. For example in the 2000s violent crime in Detroit, Michigan dramatically decreased. Gun sales also decreased. The two did not cause each other. The two were caused by the same factor and correlated very strongly as a result. I remember reading a sociology paper about lower gun sales leading to less violent crime at the time. However, gun sales and violent crime decreased because the population of Detroit decreased. In 1990, Detroit had a population of 1.2 million people. In 2000, the population had dropped to 900,000. By 2010 it was down to 650,000 people. The drop in population means fewer criminals and fewer people available to legally buy guns.

I’ve used simple examples, but causation can be very complex. There might be six or seven factors at work in a causation, some of which may not be obvious. The black death was one of the worst plagues to ever hit the human population. But bubonic plague isn’t actually that contagious. There were multiple factors at work to make the Black Death as formidable as it was: drought caused crop failures, crop failures lead to even higher rates of malnutrition, malnutrition causes higher susceptibility to diseases and illnesses, Bubonic Plague mutated to become communicable person to person without the parasitic vector (no fleas needed in other words), also malnutrition leads to fewer antibodies to fight a disease once you have it, making bubonic plague nearly 100% fatal. And suddenly, Bubonic Plague a common illness in the 1300s kills tens of millions across Europe and Asia.

Travel Without Immunity

A few blog posts ago, I commented that I didn’t have measles immunity despite having had measles and vaccinations. And it’s obvious that I love history. Some of the things I would love to do in life, is see some places in the world that correspond to my love of early civilizations. Egypt and Belize are two of the places I would love to see before I die… But it’s not going to happen.

In 2006, I went to Berlin, Germany. Beautiful place. I didn’t want to come back. But as I prepared for the trip I had to get a couple of immunizations against hepatitis or something. I don’t remember now. At the time, I was given another round of MMRs that didn’t change my immunity or lack thereof to measles.

Recently, I was watching one of those exploration shows and it dawned on me that no matter how much I want to see Belize, Mexico, or Egypt, I literally can’t. On the show, the host ran across a group of kids outside a church. They looked a little lost and sad. The host commented that he had been told there was a measles outbreak in the town and nearly half the population was sick as a result. The kids outside the church were asymptomatic, but were being taken care of by the church because they had family members that were sick at home.

Well, damn, I’d never thought of that. Countries like Belize, Egypt, and Mexico do not require vaccinations against most diseases and they are expensive enough that most people can’t afford them unless there is a free clinic that pops up offering them. The population is always at risk for outbreaks of diseases that have been mostly eradicated from countries like Germany, the US, Canada, the UK, France, etc.

This makes these countries no go zones for me. I’ve had lots of friends take Caribbean cruises, but I get sea sick, so I’ve never even given serious consideration to one. Which is probably good.

The measles virus can survive in the environment for a dozen or so hours. This means that even if I never left the ship, I could still be exposed to the measles virus. Anyone who goes off ship could potentially carry measles back on board via clothing or souvenirs they purchased.

It is something I have never thought of before, because nobody that lives in a country where these deadly diseases don’t happen very often, thinks about immunity. We’ve been vaccinated, we’re safe. Unless we’re not.

And so, at 1:42 in the morning, my dreams of seeing Mayan temples or The Great Pyramid of Giza up close and personal, die a painful death.

Porphyria; the Disease Helped by Cannibalism?

Porphyria is a rare genetic disorder that is recessive. You must carry two porphyria genes to get it and even then, expression of it isn’t guaranteed. There are several types of porphyria (acute, cutaneous, Swedish or Acute Intermittent Porphyria – AIP, , erythropoietic porphyria (EEP), one affects the central nervous system and one affects the skin. However, it should be noted that symptoms affecting both the skin and the central nervous system isn’t uncommon. Meaning while the two are differentiated, they still crossover in symptoms.

Porphyria is a blood disorder. As red bloods cells break down, they are metabolized by the body and excreted. However, people with porphyria have a dysfunction of the metabolism of red blood cells and the often the separation of iron and oxygen carried by red blood cells despite beginning to decay, becomes problematic.

Porphyria has a variety of physical and mental symptoms, including skin sensitivity to sun, deformation of skin including the creation of lesions or build up of dead skin in crusty scab like patches. Red or brown urine is also very common. Rather uncommonly, people with porphyria can have purple, blue, or black urine as well. The reason we believe George III of England most likely suffered porphyria (most likely AIP), is because aside from having bouts of madness, the royal physician recorded that George’s urine was often purple.

For reasons, I don’t quite understand, people with porphyria are encouraged to eat diets high in protein, specifically protein in the form of meat. Protein from eggs, nuts, and other sources aren’t metabolized and used as well in the body when one has porphyria as protein gleaned from meat consumption. In other words, vegan and vegetarian lifestyles are highly discouraged when one has porphyria.

Interestingly, porphyria which is treated in modern medicine with medications and blood transfusions may also benefit from cannibalism. There was a missionary in Papua New Guinea in the late 1800s who made notes on a villager who suffered severely from an unknown disease that had left his face disfigured and made him suffer bouts of extreme madness (during one of these bouts, he cut off part of his own foot), common symptoms of porphyria, who would get better after feasts that included cannibalism.

This story provided plot inspiration for an early episode of CSI: Crime Scene Investigation in which a woman with porphyria was killing people to cannibalize them, because eating of people and drinking their blood worked better than the medications and transfusions.

As a side note, historical inbreeding of royals and among small populations like villages in Papua New Guinea made the disease more common than it probably would have been otherwise. Today, only 5 out of every 100,000 people suffer from porphyria. There is no cure and it is a painful disorder as well as causing disfigurement and mental illnesses.

Measles

I’ve mentioned before that I do not have immunity to measles. I’ve had at least 12 MMR vaccinations and I’ve had measles. Despite that, when I started college at the University of Missouri they demanded a titer test be done… After all, I got measles when I was 7, despite being vaccinated. It came back that I did not have immunity to measles. Another round of MMRs was given (I was 25 at the time). Then I was tested again and again, I still didn’t have immunity.

In 1987 when I got measles, I was forced to get another round of MMRs before I was allowed to return to school. I don’t remember much about having measles. My sister who is 10 years older than me, got measles first. She had moved out and was living with a few other girls when she came down with measles. She came home so mom could take care of her and then I got measles too.

I don’t remember much about having measles. I remember I was miserable. I remember rolling over in my mom’s bed and vomiting in a bucket. That is literally my only memory from the 6 days I was sick.

I bring it up because the states of Washington and Oregon are dealing with a measles outbreak. Right now there are 23 confirmed cases, all of them unvaccinated children. Thankfully, I don’t live in either of those states. Right now, I’m on a state registry. When a case of measles is confirmed in Missouri, I get an email warning me about it.

Why would any agency go to such trouble? Measles can be fatal to children and adults. And despite the multitude of MMRs and having measles, I can’t fight the virus that causes it. I can fight rubella (aka: 3-day measles, German measles, and walking measles), but not the true measles virus (aka 7-Day measles). I’m phobic of unvaccinated people as a result.

At least 14 children in my sphere of existence have autism. None of the parents of these children believe vaccines caused it. Most of these parents believe it is the result of genetics, not environment. And at least 3 of these people have multiple children with autism, which seems to strengthen the idea that the cause is likely genetic.

I consider parents who don’t vaccinate their children to be selfish. I say this as a child who had measles. Even if I don’t remember it well, I do remember being miserable. I had terrible nightmares while sick with measles. I didn’t have nightmares before that as far as I can remember. And I never stopped having terrible nightmares after I recovered. I remember the doctor calling them “fever dreams” when I was a kid and him telling my mom that nightmares in feverish children is common. As an adult, I believe measles to be part of the cause behind my adult nightmares. I’ve talked to other people who had measles as children who also have terrible nightmares as adults, including my sister. Along with nightmares, all these people are vivid dreamers just like myself.

Measles can cause brain damage in children due to the high fever. The rash can cause skin deformities and scarring (not pitted scarring like chicken pox, but red raised scarring patches that looks not unlike eczema). Internal organs can be damaged, again thanks to the high fever involved. Pneumonia and encephalitis (swelling of the brain) are also fairly common complications of measles. Scarring of the bronchial tubes (measles is primarily a respiratory virus) can occur and follow the child for the rest of their lives. It can damage the esophagus and the sphincter that controls the entrance of the stomach as vomiting is very common with measles. Furthermore, it can cause a person to go deaf. And I’ve already mentioned it can be fatal.

I get that we all like a good conspiracy theory and we love to think scientists, doctors, and the government are intentionally trying to eliminate us. However, do any of these things make the risk of measles in a child worth it?

I think this is worse because most anti-vaxxing parents are vaccinated. They were vaccinated as children, didn’t develop autism, and have never had to endure the illnesses they are forcing their children to risk getting.

Then there are people like me. There are people who no matter what cannot develop immunity to a certain disease. Measles is one of those diseases that becomes contagious before symptoms begin. Measles can actually be contagious nearly 7 days before symptoms begin. And because the person with measles doesn’t have symptoms, they are out and about (school, the store, the street, etc), exposing others who may not have immunity to the disease the person is about to come down with.

I have wondered if someone could sue over such a thing. If I came down with measles as the result of being exposed at the grocery store to a child with measles as the result of a parent refusing to vaccinate against it, could I sue the parent for putting my health and life at risk? I also wonder if we shouldn’t force these parents to endure the diseases they are risking their children get. I find it hard to believe that anyone who has endured measles would risk their child getting measles if they understood how awful it truly was. Or whooping cough or diphtheria (I haven’t had these, but I believe they would be just as awful as measles).

Ritual Dreams

Ritual Dreams will be written by the end of January as long as I can write 400 words a day. So far so good on it. I put 2,000 on it Monday night. It is scheduled to go to the editor in mid-February and release on April 1, 2019.

Pre-Orders are available (links below).

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A few things to know about Ritual Dreams. It does involve ritualized sexual abuse, nothing that I get into details about though. Even I have my limits and severe mental illnesses beyond ASPD and BPD.

That paragraph above is part of the reason it has taken a year to write. I realized I needed to learn more about cults and broke out the research, even interviewing one of my readers who grew up in a cult (turns out I have 5 readers that were raised in cults, which is kind of unsettling).

The mental illness I picked was incredibly complicated to write, both from the perspective of the person that has it and as someone who didn’t have a ton of experience with it in real life. And since I did pick a mental illness as a complication of my killer, I had to get those parts right. I wouldn’t have been able to live with myself if I hadn’t given the mental illness every bit of authenticity I could muster.

Every time I wrote one of the Killer’s Chapters, I had read and scrutinize it and then do it again a few days later. And then I had to find ways to discuss the illness without info dumping, which was exceptionally hard as there was a lot of information that needed to be included.

Of all the killers I have created, this one is the scariest and most sympathetic in my opinion. As Ace dealt with her own existential crisis of not being able to just label the killer a “bad guy,” I had to overcome some of my own demons. And I had to struggle to make Ace not feel sympathy towards the killer, since she is supposed to be incapable of such a complex emotion.

There were nights I went to bed and dreamed of the killer. There were days I stared at a killer’s chapter I had just written and agonized over whether it was “accurate enough.” Then there were other times, I just stared at the blinking cursor and wondered “what the hell was I thinking to tackle this?!”

But once the Lyrica was out of my system, the writing was so much easier. And so much more concise or as concise as any Cain novel ever is, she is rather wordy even in her thoughts.