CategoryBlatherings

Hidradenitis Suppurativa

Imagine that you’re going about your life one day, and you notice that you have been scratching at the same dime-sized spot of skin for the past few hours now–let’s say it’s on your underarm. Or maybe it’s tender, so you keep rubbing it. Either way you notice it, but in passing annoyance.

You continue about your day.

Later you start to feel a bit run down. “Am I coming down with something?” you wonder. You feel rather achy, and that spot on your underarm—whether it be itchy, tender, or both—is starting to firm up beneath the skin. Maybe you were bit by a spider while you slept last night.

Your day continues. As you go about your business you notice your underarm becoming more sensitive by the hour. As you move your arm you feel a burning pain radiating from the spot. The itching intensifies. What on earth bit you? You may duck into a bathroom to check it out. The skin is red, tense, and raised. There may even be a bit of a bump on the surface. You touch it and discover that beneath the skin, there is a firm lump the size of a quail egg. The pain is an excruciating, stabbing burn that radiates down your arm.

You finish your day and are getting ready for bed. You may be turning in a bit early due to fatigue or you may have toughed it out until your regular bedtime. You take some over the counter pain meds, and climb into bed gingerly, trying to not disturb the boil—which is quite swollen by now and may be anywhere from red to purple in color. Your underarm aches, and you drift off into a fitful slumber.

A day or two passes. The boil has swelled into a monster—half-above and half-beneath your skin—somewhere between golf ball and baseball-sized. You make an appointment with your doctor, who looks at it, only sees what is on the surface, then tells you to take some acetaminophen and to clean better when you shower [and to take more showers]. If you’re overweight, they also tell you to lose weight. You go home. You feel like you’re going to come down with a cold any minute—achy, sweaty, tired, cranky. The boil throbs even when you’re not moving your arm, and makes doing anything difficult.

That night you go to sleep, and wake up a few hours later. You notice that your arm isn’t as tender, but there is an awful smell, and that the underarm area of your T-shirt is damp. You turn on the light in the bathroom to find that the boil is now oozing a milky, bloody mixture that smells absolutely terrible! You try squeezing it but not much more comes out, despite how much there is on your shirt. You put a topical ointment on it, a bandage, change your shirt [and maybe bedding] and head back to bed.

The next morning your underarm throbs. Every movement of your arm causes a radiating, burning pain. It feels raw and bruised despite it opening up. And it’s still oozing that fluid.

This continues. It might continue for a few days, or it might continue indefinitely. Over time, more of the boils appear. If they heal, they leave behind horrible white or purple scars. If they don’t heal, they will constantly bleed, and/or ooze a clear to milky fluid that smells like something died. New boils will appear inside of the scars, and old, healed lesions will open up again. Multiple boils will form close together and create a tract of tight, inflamed skin over a large area. You see your doctor over and over again with the same results—they tell you to clean yourself better and/or to lose weight. Sometimes you receive antibiotics if it looks like you may also have an infection, but that is rare.

Over time you become self-conscious. You change your routine, trying to not irritate the affected area. You stay home on days where the smell from the open sores are too bad, or when the pain from moving is too great. Over the counter pain medicine does nothing to alleviate the deep-seated throbbing, stabbing, and/or burning pain that comes from these boils. Any kind of pressure is agony, and they tend to form in the worst possible places. You’ll distance your friends. You may lose your job. You constantly feel rundown and achy. Your sleep suffers. You gain weight from inactivity. Each day becomes a chore to complete.

This continues for years, unchecked. You cycle through periods of flare ups and remissions where it’s not so bad, but as time goes on, the “good days” become few and far-between. You begin having “not-as-bad-as-normal days” instead. The aching, pain, and tenderness is constant. You may begin to get boils in other areas as well.

Some day you might get lucky. You may find yourself in the emergency room, at the end of your rope due to a massive softball-sized boil, and luck into a doctor who not only wants to lance it so you can get some relief, but knows that you have a legitimate disease—and that it has nothing to do with poor hygiene like your doctor has been saying. Others won’t be so lucky, and might go through life thinking that they are prone to getting boils, that they somehow aren’t washing properly, or that it has to do with weight. But if you do get a diagnosis, just knowing these things can be so freeing!

This disease is called Hidradenitis Suppurativa, often abbreviated simply as HS. It is a rare, extremely painful, debilitating autoimmune disease with everyday pain rated between 4-10 out of 10, and an average DLQI rating of 10-18; that’s more painful and debilitating than most well-known chronic, disabling medical conditions, and on par with the pain experienced by cancer patients. 1-4% of the world’s population is affected by it, and those are only the people who have overcome the shame and embarrassment of the condition to get a diagnosis. In fact, it is an invisible illness; the people affected by it hide it for as long as possible, and it’s usually in areas covered by clothing. It is also shown to be hereditary and often runs in families. There is no cure. It can be semi-managed, but that is all.

In the UK this is HS Awareness week, and those of us affected by this disease in the US are adopting this week to promote HS awareness as well.

Until this point, I have only told family about having HS. I have it in an embarrassing area that is difficult to manage, and it hinders my ability to walk, stand, and sometimes even sit on a regular basis. It makes it so that I can only leave my house once a week due to the mess and pain. I’ve had to change a lot about my life due to it. After my car accident it was easier to blame my HS flares on my back, and I still do to people who don’t know. I can’t wear certain types of clothing, going to the bathroom is a struggle at best, and I can’t be as active as I would like to be. The consequences are far too great. It has become especially bad since having my daughter. I was officially diagnosed about two years ago, and my current flare up has been three years long. Three years with no relief! This is part of the reason I decided to begin writing in the first place—it’s something that I can do from home, and it distracts me from my pain.

I suffered for fifteen years before I was diagnosed. I had been running a high fever and unable to keep down food or water for twenty-four hours, so my husband made me go to the ER. They couldn’t figure out why my white blood count was so high, but I wasn’t going to mention the oozing, open wounds I had because I was too ashamed. My husband finally suggested it might be from the sores and the ER doctor insisted on having a look. It turned out that one of my boils had become infected. The ER doctor sat me down and walked me through the HS diagnosis, and recommended I go see a dermatologist, as they are the specialists who are trained to handle HS. She also told me that Hidradenitis is NOT contagious. You cannot catch it from anyone. It is not due to poor hygiene. It is not due to being overweight—though sometimes that can exacerbate it. It is not due to anything within an affected person’s control.

Hidradenitis is a vile disease, and I’ve never made pains to hide it from my husband because he’s seen me naked pretty much since the onset of my HS. He has been by my side as it has become progressively worse, and he has seen how debilitating it has become. I am extremely fortunate that he handles the disgusting nature of this well. I am in several support groups for people with HS, and many in them have lost partners due to them not being able to deal with the symptoms of this disease.

I saw the dermatologist again last week, and we discovered that I am now at stage three. In the past when I was stage two, I had been recommended to have surgery to remove most of the skin on the lower half of my torso and replace the skin with a skin graft from my thighs and hips. I didn’t have the support to be able to have a surgery like that, as it will require weeks of recovery and I have a young child at home that needs constant supervision. I still don’t have that kind of support, so surgery is off the table.

A recent discovery has been that the drug Humira helps some people suffering from HS, so after talking with my dermatologist we are going to try that. This has come about due to increased awareness about HS, so I am working through my shame and writing this in the hopes that someone who has it might read it, and get the help they need. [Or that someone who knows a person with these symptoms might encourage them to look into HS further and talk to their doctor about it.]

It is embarrassing, but those of us suffering through this need to put aside our humiliation and speak out in the hopes that maybe some day, there will be a cure, and we can regain some semblance of having normal lives.

If you want to support awareness, please share this post or visit http://www.hs-foundation.org and make a contribution. Also, if you shop at Amazon, [like where my books are sold!] why not go through Amazon Smile and set your charity as Hidradenitis Suppurativa Foundation Inc? When you use Smile, Amazon donates 5% of your purchase price to the charity of your choice! It’s easy and painless–unlike HS.

To find out more about Hidradenitis Suppurativa, please visit No BS About HS.

The Masks We Wear Online

Yep, this again. Another post about social media.

I have three main social media pages I try to keep updated: Facebook, Instagram, and Twitter–mostly in that order. I have found considerable positive traction on Instagram [of all places!] and I am gaining a little ground on Twitter now, which I honestly didn’t expect. It goes to show that if you throw yourself at something long enough, eventually something will stick. Though now all I have in my head after typing that is a mental image of me beating the hell out of Twitter like it’s an old console TV on its last legs.

I’ve considered a YouTube channel for a few months now, but that also involves the artistic side of my light novels so it gets backburnered easily. [And we all know what the comments section is like over there…]


Roughly, yes.

Social media has been my bugbear for a while now, but you already know this. I’m a private person by nature, and it’s been difficult for me to come out of my shell while lacking that magic confidence anonymity lends people. As Oscar Wilde said, “Man is least himself when he talks in his own person. Give him a mask, and he will tell you the truth”. Despite this being stated a century before the internet would even become a thing, it seems to be more true now than when it was originally coined. Human nature doesn’t change much, and with the exception of a few outliers, we all want to be liked and accepted. It gives people a sense of value to feel like others appreciate them and their ideas.

Creators put the intimate workings of their mind on display for people to pick apart and dissect–whether it be music, writing, or artwork. Social media makes two things easy: putting your ideas in front of millions of people the world over all at once, and allowing them to judge it–and you–from behind the safety of their own mask.


Sometimes multiple masks at once…

I don’t like taking off my mask. It’s not that I am secretly a cruel or unpleasant person, [Though I feel that I am much more amicable online than off…] but that I feel my discomfort and worry bleed through my words. I’m scared. I hesitate. I re-word, erase, and refine: “Will they like this? What if someone thinks it’s awful–what if it goes viral for being terrible?” [Like that last one? I always jump to worst case scenarios.]

But to be a writer–nay, an author–you have to have a thick skin! That means you can’t be afraid to take off your mask. You can’t be afraid to put yourself and your work out there! You need to handle criticism and praise with equal parts grace and aplomb. If you even hint at uncertainty, your peers will repeat this as if it is a magic incantation that will remove your doubt. I even find me telling myself this sometimes, which is awkward.

So what is a writer to do when they need to be honest and real on social media in order to connect with others in an authentic way, but find themselves full of anxiety and fear? They either stop writing, or do the exact opposite of what they are instructed to do: they create a new mask.

But… the goal was to not have a mask, right? Well, we see what happens when famous people use social media without their masks on–it doesn’t work. They alienate people, and quickly; a few of them even lose fans, and access to their own accounts for it. So you end up creating this half-mask, like the Phantom of the Opera, where you are both open and honest, but also guarded. Telling people how they should feel is stealing their agency–if something someone says about you or your work bothers you, you have every right to be upset about it! But the way you wear your own mask when others are watching says more about you than any thinly-veiled rant or tear-stained tweet ever could.

Ultimately, the magic author incantation is a lie. You cannot follow it as written. There is no way you can completely turn off your ability to care what others think about you, even if you try to convince yourself otherwise. We’re only human, and fall easily back into old habits… we trade one mask for another. It’s not a bad thing; this way we can fulfill the spirit of the incantation while being honest to both ourselves and our followers.

I believed in it for too long. I tried to bend my own feelings to fit it, trusting that it was right despite it feeling all wrong. I should know by now to listen to my gut, even when it contradicts what seems like solid advice. I took an impromptu trip to visit family recently, and had a lot of time to think about my online presence while not having much of an outlet through which to curate it. I didn’t pack my laptop, so I had what I could reach with my phone. [It was mostly Instagram, and it was largely pictures of the forest around my parent’s place in Missouri. It was… quaint… and you didn’t miss too much. Just some lousy photography of trees, flowers and my poor, misplaced-but-well-taken-care-of cats.]

I worried about leaving it quiet for so long, but it didn’t seem to make a difference. Now that I’m back and updating, having had this revelation about masks, I am seeing a better response to my posts and tweets. It’s kind of magical in its own sense, but I know that it’s because I learned from my past experience, and was willing to go against what I was initially told to do.

The lesson in this is: Don’t be afraid to be yourself online, but don’t forget to protect yourself either. Remember that we’re all wearing masks out here–even when at first glance it may appear that some of us aren’t wearing one at all.

Shower Thoughts

I was in the shower and as I was shampooing my hair I found my thoughts drifting toward a strange subject–the fertility of long-lived species.

Well, specifically, it was elves. High elves, the original nigh-if-not-actually-immortal haughty bastards of fantasy. They live for a long time, and typically are portrayed as having small populations. Stories with these races in the world are often set long past their heyday, and it makes sense for a long-lived population in decline to be few in number. But, what if it was because of something else, like fertility?

In humans, females are fertile for twenty-four to forty-eight hours each month, and roughly from the ages of twelve to fifty. Males are fertile from the age of twelve until they die, but the quality of the offspring can suffer as they age. Animals are usually “in heat” once or twice a year, but for up to two weeks at a time. This starts around the age of six months and lasts until they until they die. [They also have shorter pregnancy cycles than humans.]

Don’t even get me started on Pokemon.

If elves [or any other long-lived race] are portrayed as similar enough to humans, then do their females go through a menopause? If so, since they have such long lifespans, when would it occur? Around the same time as a human female? That would make it fifty years old, which is usually interpreted as still being in childhood for these types. [Sometimes it’s literal–they still have a child’s body; or figuratively where they have an adult body but a child’s mind.] Under the assumption that the average age of death for elves is say, five-hundred–making their life-span five times as long as ours–then that means they don’t reach sexual maturity until they are sixty years of age. Still applying equivalent human time constraints, that would make them young adults. [About twenty-five years-old, which seems late for puberty now, doesn’t it?]

My main question is, when do they stop being fertile? Do they have a natural end to their fertility at a set age [At age two-hundred and fifty, if we’re still following humans.] or are they fertile until they die, like animals tend to be? If they’re continuously fertile, a small population makes sense if couples could wait to procreate because they never have the option not to–barring some factor like injury or infertility. This also means the number of children in the society at any given time would be low too.

On the other hand, if they had a set end to fertility I imagine a larger population since when you have a limited time to do something, you tend to start earlier rather than later. But they could start worrying about overpopulation, or some could choose to go child-free for various reasons–personal preference, available resources, etc. If enough of them start feeling this way, then the population will decline naturally as the elders die off. [This is happening in Japan right now.]

The only thing I can conclude is that a small population would be logical in either scenario, which doesn’t give me any answers. Of course, the author can write the elves [or other long-life race] however they want and absolutely none of this matters, but sometimes I like to take a good shower thought and examine all its facets under the light. In my Atlantis: TVC series, I have races with longer life spans than humans; most of them have small populations, and I can’t get into more than that because I would be entering spoiler territory. But this exercise makes me take a deeper look into my own races and characters–which is never a bad thing. In fact, it’s caused me to re-examine several future plot points and motivations. [In a good way!]

Sometimes shower thoughts are the best thoughts.

What do you feel causes authors to depict elves [and other fantasy races] as small societies? Do you feel it’s fertility related, or due to some other reason?

Modern Medicine

I have to remind myself that doctors are human. It’s easy to be angry when they say, “Well, you are having these symptoms, and they’re not good, but I don’t know why.“, especially when the symptoms are scary as hell and make you feel like death warmed over. I feel that medical dramas might be to blame, giving us bad expectations–especially shows like House M.D., where a team of doctors work tirelessly until they diagnose their patient. You don’t set out to have your expectations dictated by a TV show, but it happens anyway, on a subconscious level. In the real world doctors shrug, maybe throw some meds at you, run some general labs, and then see the next patient.

So we’ve spent several hundred dollars for twenty-five minutes of time and still have no idea why this is happening. Excellent. Thank you.

I sound bitter. I know doctors go through several years of schooling to learn their craft, but I can’t help but feel like it’s a huge cash grab. I would feel better if there was some trying going on. That’s why I’m bitter. I still feel like crap. I could have gone to see my auto-immune doctor, received the same answer, and saved money. [At least I could have complained about this horrible flare that seems less like a flare-up as the weeks pass and more like a new normal, which is bullshit.]

I am sick of nearly passing out when I stand for longer than ten minutes. I am sick of feeling physically exhausted after being awake for six hours. I am sick of trying to do anything through this brain fog. My blood pressure is still ridiculously low. Why won’t it go up? No one can tell me, but doctors keep saying to eat more salt. Why is the answer always more salt? I find myself trying to self-diagnose through Google, and I know that’s foolish, but doing nothing feels like giving up. I figure at best I can find an answer–at worst I can find a list of things to look for that I can bring to a doctor. [Which they hate, by the way. I love that “Fuck you, I went to medical school, you fuck” look they get when I tell them I was looking up stuff online and my symptoms match the following conditions, so if maybe they could consider those when they are looking me over that would be great.]

In short, if you ever want to feel like a horrible waste of time, get a condition no one can diagnose. [I don’t recommend this though.]

How I feel about going to the doctor…

On to something different! I’m trying to force myself to do things–life things–despite my body’s desire to do nothing but decompose slowly on the sofa. Dishes, eating food, laundry, video games, writing… Yes, I have to force myself to play video games, because that’s what my life is now–I am too exhausted to even do stuff I used to do to avoid responsibility. But writing is in there, even if what I’m putting down is absolute garbage. I’m hoping that future me can turn the word vomit into something usable when I do first edits. [I have a lot of faith in future me. Somehow she’s not dead, and full of energy and/or inspiration. Somehow.]

Also, I’m going on a trip soon, to visit family. It was rather impromptu, and I’m a little nervous about traveling while feeling like this, but I’m hoping that I can try to unwind a little. Between the health problems, stress, and my daughter fully embracing the Threenage Life, I need some kind of break. Or I’ll break.

140 BPM: A Sob Story

It’s tough to write when you’re sick.

It’s not the constant pain, or crushing exhaustion–which are limiting on their own and make me want to do nothing but lie in bed–but the horrible muddled brain that comes along with it. The sitting, and staring, not comprehending the words of your outline, and being unable to do anything except look at that blinking cursor; wishing you could think of anything except how rundown you feel. In fact, this post is an effort to shake the cobwebs from my brain, and I still feel like I’m doing it poorly.

Instead I’m binge watching Fuller House because it’s the only thing my daughter will allow on the TV that isn’t cat videos on YouTube. [She calls it the “Babysitter Show”] And despite the fact that the show is aimed at me, a person who grew up watching Full House, I kind of hate myself for liking it the little bit that I do. [But at least it’s not the same cat videos over, and over, and over again.]

Definitely not cat videos

It’s also difficult to write through depression, which I’ve struggled with off and on for a good portion of my life. Fortunately it wasn’t so bad that I needed medication, but it’s tough to avoid when you have a chronic illness. [It pretty much comes with the territory when you’re in near-constant pain.] And not only that, but I have several injuries from accidents before this happened, so basically I’m a mess of a human being. The worst part though, is that it hasn’t stopped. I’ve lost weight this past year. A lot of weight. I originally thought it was from stress–losing our house and having to be separated from my husband for two and a half months was pretty stressful. Add in not eating much and deciding to quit soda, and you can see where I thought the weight I lost was just from those things. It didn’t seem like a problem until my husband and I were able to be together again, after we got into our new place. I fell back into old habits: Soda. Fast food. Chocolate. But I still kept losing weight. In denial that anything was wrong–and partially in defiance of it–I started eating like an idiot.

My spirit animal

I’m supposed to eat a ridiculous amount of salt because of my stupidly low blood pressure. [So low that I pass out if I’m not eating enough salt.] I’ve also discovered that sometimes I need to eat red meat to feel better, on top of the salt intake. So this turned into an excuse to eat out–a lot. Burgers, Steaks, Fries… I have low cholesterol too, so I thought a little indulgence here and there couldn’t hurt. Until it turned into three times a week, and still my pants began to fall off of me. Being overweight most of my life, I didn’t want to complain–after all, who would believe that unintended weight loss was bad? The people I did tell congratulated me or said things like, “Oh, you look so good!” Any doctors I had seen for my back pain [from a car accident several years ago] listed weight loss as something that would help me. Unfortunately, the symptoms of my [yet undiagnosed] autoimmune disease were getting worse as the pounds melted away, which I wasn’t surprised at. While I was pregnant with [and after I had] my daughter, I lost quite a bit of weight. My symptoms flared up and I gained weight on purpose to get back to my “normal”. Despite sounding like a crazy idea, it worked.

The weird thing is that I wasn’t officially diagnosed with anything yet, I just knew I felt better when I was heavier. It wasn’t until a year and a half ago that I was finally diagnosed with an autoimmune disease. [And it’s vile. I’m not going to even name it, because in addition to being painful, I’m that embarrassed by its symptoms. Sorry.]

But that was a bit of a digression. Some time after the holidays I started feeling really run down, realized I was being an idiot, and began eating better. Cut the fast food back to once a week [sometimes two–not gonna lie] and cut the soda back to only when eating out. I broke a tooth on Superbowl Sunday, and was given antibiotics so it wouldn’t get infected before we could extract it. A week later, I ended up with a horrific rash all over my body. Went to the ER, where they thought it was chicken pox. I assured them it wasn’t, as I’ve had both it and shingles before. Twice. I also found out that in the past ten months, I’ve lost over forty pounds. Without trying. Despite cramming myself full of junk.

They finally did a blood draw and determined it was an allergic reaction to the antibiotic. Pulled me off that and put me on Prednisone. No qualms from me there–I love Prednisone. I hope to have it prescribed to me the same way a Vicodin addict hopes for painkillers. It is the only way I get any relief from my chronic suffering. [Because it suppresses the immune system.] After three days on the Prednisone I felt absolutely amazing. My rash was gone, my bloat vanished [the bloat I hadn’t realized I had], and the symptoms of my chronic illness were in regression! I had the tooth yanked at the beginning of March, and tried to take a picture of my swollen face to send to my mom a few hours after the procedure. But I didn’t look swollen–at all. Yay for Prednisone!

A few days later I ran out of medicine and started to feel shitty again–headache, lightheaded, fatigued. Upped my salt intake, but to no avail. Now I noticed a new symptom: my heart felt like it was going to leap out of my chest. All the time. I started monitoring my heart rate with an app on my phone; 80-ish beats per minute at rest, over 100 with mild activity. Soon even walking across the room left me breathless. [and with a heart rate of 120-140 bpm.] One night a week or so ago I felt a crushing pressure in my chest, and my husband convinced me to go to the ER.

After they determined I wasn’t having a heart attack and didn’t have a blood clot, they recommended that I see a cardiologist and turned me loose. The problem with that is that since my husband switched jobs, I don’t have health insurance. I called around and was put on a waiting list at the only low-cost provider in town–a five month long waiting list.

Part of me wonders if I’ll be around in five months. Part of my husband wondered if I’d be around in five months also, and he told me that we were going to dig into our savings and have me see a specialist. I protested. We were saving for a new car–ours is on its last legs and should probably just be given a viking funeral. He insists.

He’s right. I’m used to putting things before myself: my daughter, my husband, my pets, the car–even housework. [I can’t tell you how many times I’ve thrown out my back vacuuming. I am a garbage person.] Now I’m starting to get nauseated after I eat, no matter what I consume. It’s pretty awful. I’m tempted to stop eating altogether. If you follow my Instagram, you know I love to cook, [and eat!] so this is terrible.

I’m at a loss. I have no idea what my body is doing any more.

So this coming up week, I’m going to see an Internist. I have no idea how much it’s going to cost. This scares the crap out of me. But at the same time, I’m more afraid of dying. Tachycardia [an increased heart rate] will just kill your ass over time. Within five years your chances of dying go up something like 75% statistically. I don’t want to spend five years feeling like this. I don’t want to die either. Period. End of story.

I’m worried it’s more complications from my autoimmune disease. I’m also worried it might be cancer. [My whole family has had it, and I found out I grew up in a secret nuclear fall out zone, so it’s not farfetched.] I’m worried it’s another autoimmune thing, because they travel in groups. I’m worried about a lot of things. I always have been. I’m just… not used to worrying about myself.

You’re probably thinking that’s how I’m going to end this; that if I had thought of myself sooner, I wouldn’t be so sick. Real life doesn’t work that way though.

The truth is that I would have spent a lot of money that we couldn’t afford to spend, on a lot of doctors, who would have dismissed my symptoms because I’m fat. It’s happened in the past, and I’m also worried it’s going to happen next week, despite telling them about all the weight I’ve lost. After I was diagnosed with my autoimmune disease, I told my primary doctor about it, and she laughed at me. Told me I couldn’t possibly have that because she’d never heard of it showing up where it affects me! She told me to lose weight to fix it. I was embarrassed and furious. Firstly, I knew that losing weight exacerbated it; secondly, it was common for it to appear where it affected me; and finally, this family practitioner was dismissing the diagnosis of someone who specialized in autoimmune diseases! In some ways, I’m not sorry we lost our insurance because I never have to see or pay her condescending face again.

There is no happy ending, or simple moral to this story. Just fear and uncertainty.

Real life sucks like that.

 

P.S: Normally I would have written something like this in about two hours, but it took me the entire day to finish it due to brain fog. Ugh. Wish me luck with my appointment next week! I’d love to start feeling better and get back to writing.

The Little Things We Take For Granted

I’ve had enough. I stole my husband’s keyboard.

Last night as we climbed into bed we were talking about my book sales over past weekend [The recent Heartwarming Sale was a huge success!] and I was saying how I needed to get started on the third volume of Atlantis: TVC soon, but that even typing up the outline was difficult because the keyboard I had bought to fit the smaller space available on my desk was too stiff to write on. So half-asleep he proposes: “Why don’t we just trade keyboards?”

Now, for reference, I had asked him to trade keyboards when I was still using my giant gaming keyboard and he said no, despite having way more desk space than I do. Now that I spent money on a new, smaller, stiffer keyboard he’s changed his mind? I say as much, and get nothing but a snore in response.

My husband never remembers anything he says while half-asleep. So after he left for work today I switched our keyboards. I’m writing this entry from his keyboard now, and it’s amazing. I press a key, and it actually goes down! I don’t have to smash certain keys to get the fact that I have touched them to register! My backspace is normal size! Bliss.

Fortunately for me he’s on a miniature kick right now so he’s building armies and hasn’t been on the computer in almost two weeks. He still has several boxes left to put together and paint; it could be months before he notices.

I never thought I could hate a keyboard so much. I mean, I could have sucked it up and bought a different one, but not many are compact enough to fit in the space I have available. Plus there was no floor model for this particular board, so I couldn’t test it at the store. I tried everything I could think of to break it in, but even with several weeks of that there were still problem keys. I mean, I would be writing for five minutes, go back, and realize most of my words were missing the letter A. My fingertips hurt after typing on that thing! I looked up the model online to see if anyone else had that issue, or if it was just me. It was at this point that I discovered there were whole forums dedicated to “keyboard feel” and I was stunned. I wish I had known keyboard feel was a thing before I bought a new one. I thought that for typing, all keyboards were keyboards! Turns out that I am a dumbass and unknowingly bought one of the stiffest boards on the market.

SiiG JK-US0012-S1. DO NOT BUY.
Model: JK-US0012-S1. The “JK” stands for “Just Kidding–ha ha, you thought this was functional!“, right?

 

So I suffered through two months of crappy keyboard for nothing.

Well… part of that was negated by my torn rotator cuff, so it’s more like a month and a half–but it was still a month and a half of hurt fingers and swearing! At any rate, I’m finishing up my outline and plan to break ground on volume #3 tonight after the little one goes to bed. I am ridiculously excited to write again, and I hope to get this volume out just as fast as the first one. My goal was originally to release two books a year, [Back then I didn’t know any better!] but on average it takes me six to seven months to write the first draft, then two more months for edits, revisions, and creating the artwork. That means each book takes around nine months from start to finish and my output is two books every year and a half–which isn’t too bad considering that I’m raising a kid and sleeping on the rare occasion as well.

I already have a complicated relationship with sleep without hating the fact that I need so much of it to function. Besides that, energy drinks aren’t the greatest thing for you–and I have something like a +25 versus caffeine, which sucks. When I get in a writing [or drawing] groove the first thing I do is a quick calculation of what time the kid will wake up, and how much sleep I would get if I could only keep writing for just one more hour! Before I know it many hours have passed, and I only get three hours of sleep before my three year-old is running around and trying to climb the walls while I stumble out to the couch and stare bleary-eyed into space while cursing the me of last night who thought it was soooo important to finish that chapter. Also, once I achieve enough alertness to even think of reading what I wrote, there is a 75% chance I will hate it and need to rewrite whole sections of it.

All this would be made a thousand times worse by having to do it on The Worst Keyboard in Existence. I have never been so happy to be rid of something in my life!

Well, except maybe that landlord who used to sneak into our house when she thought we weren’t home. She’d eat our food, and once she came over naked to do it. Ugh. Why did I have to remember that, of all things? Thanks, brain.

Injured! [Again]

So, uh, I tore my left rotator cuff a few days ago, and now my arm is in a sling.

Pro: It was my left, so I can still draw. Con: Can’t type. [Doing this single-handed right now, so it’s short.]

So if you don’t hear from me for a few weeks, don’t be horribly surprised. [I’m still going to put short things up on my Facebook and Instagram because I can copy/paste.]

For now, enjoy this video of me sketching some Atlantis characters!

https://www.facebook.com/authormelissawong/videos/745902278873010/

The World of Social Media

I know I touched on this topic a bit back in this entry, but I want to revisit it again now that I’ve had the better part of a year to explore different platforms.

Right before Christmas the fan on my heatsink died, and I couldn’t find a replacement for it. I had to special order a new heatsink, a new fan, and wait two weeks for them to be delivered. Since the screen on my laptop is broken, and my desktop was dead–I was officially computer-less.

So I turned to the last option I had left–my phone. Just the two of us, out there in no computer-land.

Now, browsing the internet on a phone is an okay thing, provided it’s done in small amounts. If you want to write on it, you’re out of luck. Trust me, I tried. I tried several times, but it just didn’t work. And drawing? Well, typically I’d say forget it, but I have a Galaxy Note, and drawing is totally feasible on one… but I wasn’t inspired to draw at all for those two weeks. So, in a fit of… I dunno… curiosity, boredom–maybe both–I decided to set up an Instagram account.

[I’m poking fun at myself, because my first post was of cheese. I like cheese.]

I originally stayed far away from Instagram because of the failure that was my Twitter [More on that in a bit] and because it’s a visual medium. I didn’t think it was a good fit–until the computer died. Then I thought, “Hey, light novels have pictures. I have a lot of images of my characters, actually. Maybe this could work…”

Within fourteen days of starting my account, I have tripled my monthly sales, and all I did was post some pictures–sketches, some previously unseen completed artwork, some pics of stuff from my day-to-day life–a random smattering of things. I don’t even have that many followers. I really regret not utilizing it sooner. Something I was neglecting to take into account is that people are highly visual these days, and they are often browsing social media quickly between tasks. You only have a small window to capture their attention–and as the saying goes, pictures are worth a thousand words.

PICTURES!

Authors–self and traditionally published ones alike–have to do their own promotion nowadays. For new or aspiring writers, this can be a tough task! It is difficult to sell yourself and your work, but having the right platform to do it through can make all the difference. This is what I have gathered from my personal experience with Social Media:

-Facebook-

Age of Account: 1 year+

Pros:

  • Large, diverse audience
  • Your page can be “suggested” based on other things people have liked [it’s like a free targeted ad]
  • Ads are cheap
  • You can schedule status updates

Cons:

  • Sometimes smaller pages and posts get lost if you don’t tune your page settings
  • Audience tends to be older
  • After a certain amount of free “reach”, you have to pay to stay in people’s newsfeeds
  • When posting links, preview pics seem to be pulled at random

-Twitter-

Age of Account: 1 year+

Pros:

  • Large, diverse audience
  • Able to post images

Cons:

  • Difficult to gain followers
  • Unless you post often you are lost in the crowd
  • Hashtags eat into your character limit
  • If your posts don’t fall under “trending” tags, then they are rarely seen
  • Pictures use up a portion of your character limit
  • Cannot schedule tweets unless you pay
  • Character limit

-Tumblr-

Age of Account: 7 months

Pros:

  • Highly visual
  • Younger audience
  • Able to categorize posts with hashtags

Cons:

  • User base has infamous reputation
  • Hashtags are abused
  • People heart and reblog, but don’t really interact with or comment on your stuff
  • Difficult to build a following

-Instagram-

Age of Account: 2 Weeks

Pros:

  • Extremely visual
  • Easy to use app
  • Hashtags actually bring people to your work
  • Ads work just like on Facebook [same parent company]
  • Small image size [keeps image theft down]

Cons:

  • Only able to update through a phone
  • Random tags from spammers
  • So. Much. Random. Porn.
  • Small image size [Hard to show large-scale artwork]

In conclusion, if I was forced to choose only two social media accounts, then I would pick Facebook, followed by Instagram. The others have [sadly] been useless in driving people to my work, or even encouraging people to engage with me. Those two outlets, combined with this blog and the natural mysterious powers of Amazon, have been the driving force behind my sales. For standard authors, I don’t think Instagram would be as useful, but because light novels are visual it works to my advantage. But this is just my opinion/experience. I know of many authors that have gained traction and sales on Twitter, but had poor luck on Facebook. Your mileage may vary.

PS: Follow me on Instagram!

The Inside of My Head

Every story is the most beautiful, thought-provoking, awe-inspiring tale the world has ever laid eyes on–a brilliant, flawless diamond–while it lives inside your head.

I’m currently in that stage right now, where this thing I’m thinking of, this idea, is amazing. It’s going to be the next indie hit–mark my words! People will tell everyone of its greatness, and praise will be heaped upon it for its beautiful, topical theme! Of course, that’s all in my head. In reality, I will try to put pen to paper [or rather, pixels to… more pixels?] and I’ll feel like I’m ruining it. I will agonize over what comes out on the page, writing, and revising–plotting and erasing–until I have a barely-passable shadow of what was in my mind’s eye. Writing is awful like that.

What keeps me going are those times where words fall like spun gold from my fingertips; elegant, beautiful, meaning-filled prose that sounds like it came from someone who knows what they are doing. You’ll know when it’s happening and you’ll ride its wave, like a bird taken to wing until you spiral down to the pavement, utterly depleted.

I am actually scared to put this piece to paper. It has such potential to be a great piece, but I’m worried I’m going to ruin it. I’m so worried, in fact, that I’ve been procrastinating by baking. Yes. Baking. [My friends will be happy–they’re reaping the benefits of it. My husband’s co-workers too, heh heh.]

And while I’m baking, the damn story still swirls around my head. I won’t stop talking about it to my husband, who probably just wants me to write it and stop bothering him with it. [It is a romance, after all…] I’m running out of things to bake. I have literally used all the sugar in my house. It’s the last thing I think about as I fall asleep at night.

This blog entry in and of itself is probably another last-ditch effort at putting it off. I just need to take that first step, to see that maybe it won’t be as far off on the page as it is in my mind. Then I can stop overthinking it.

After all, even diamonds start out as carbon, right?

Someone’s in the Kitchen…

In the back of each volume of Atlantis: The Visionary Continent I’ve included bonus content that only people who buy the book get to see. Since I love to cook, the bonus content for volume #2 was a set of recipes I’ve developed over the years–each one supposedly coming from a character of the book. [In fact, one of the recipes is for something Varanis specifically eats in Chapter Four!]

Instead of pictures of the food–because I am the world’s worst photographer–I included cute pictures of the main cast. But in case anyone was looking for it, here are pictures of the end result of some of those recipes:

Unfortunately the Crab and Corn Chowder was the one I’ve made most recently, so I have progress pictures of it. The others were from old pics, or like with the Smoked Salmon Pasta, I completely forgot to document the process step-by-step. Fail!

They’re all fantastic, but the pumpkin spice sandwiches are especially good. It took quite a few tries to get the frosting just right, but once it was there… amazing.

I share a lot of [crappy] pictures of the meals I cook with friends and family, and I cook often for them when they’re in town. When they heard I was writing, they assumed I was writing a cookbook! But with my lousy photography skills, I don’t think that will be happening soon. At least, not until I can find a decent photographer–or some decent photography tutorials–at any rate. [Could a cookbook without pictures work? That would be best for me… heh.]

Slipping the recipes into the bonus content was my way of dipping my toe into the whole idea. Who knows–maybe I’ll get the courage to do it for real… someday.