10 things that made my 2016 (a little) better

For most people, 2016 was a fucked up, miserable, factually terrible dumpster fire of a year. Icons died, racists thrived, and everywhere you looked, someone else was telling you not to be so upset, not to take it all personally, and not to worry because they were still getting what they wanted out of life, so that must mean you’re overreacting…

No, you’re not.

Icons matter because they tell us we live in a world where our aspirations are possible, and politics matter because the choices politicians make affects every bit of our existence, and racists matter because their willingness to be vocal and noticed in major ways means that a) racism never really left*, and b) they think society is swinging back to the old, oppressive, whites-first, straight people first, ablebodied people first, and especially, aggressively, men first, ways.

* I know it never left. That’s obvious to anyone who isn’t white, and to anyone who spends any time with and caring about people who aren’t white, or even actually listening to the white racist folks all around us. But a lot of well-meaning people convinced themselves that we were living post-racially, and need the reminder that the fight for equality, in this way especially, is not nearly over.

We need to see the awful, horrible, bits of 2016 so we can fight against them. Dismissing the people who are upset about this year because it’s not been horrible to you, yet, just means you have enough privilege to have avoided what a lot of other people are going through, and you’re a selfish jackass.

But.

Recognizing that the world has been on fire doesn’t mean you can’t also appreciate the cool sips of water you manage to find in between the flames. Seeing and holding on to the good makes it possible to survive the bad, and maybe even fuel the fight against it. My 2016 has been hard not just for the larger, global reasons, but for very personal ones that mainly affect… just me. I struggled. I hurt. I was afraid, and I still am.

But… I found good in the year, too. In no particular order, here’s 10 things that got me through:

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1. Arrival. I’d read the Ted Chiang story several times before, and the movie is not quite the story — which was itself, brilliant  — but in its own way, as a translation of Chiang’s story (which is about, in part, translation)… it’s beautiful. It said things to me that I needed to hear. I got to see it just a few weeks ago, in a mostly-empty theater, at a Sunday matinee, with the love of my life, and it was a perfect couple of hours. It was a moment I needed very badly just then, and I’m so grateful I got it in exactly that way, with that person.

2. Destiny. Yes, the video game. I stumbled on the free trial at the beginning of December, found out a couple of writer/agent friends were also playing, and jumped in. I love it enough that I was given the full copy as a gift a week later, just because my happiness was obvious. The game is gorgeous, the voice actors are recognizable in a way that adds to the game (rather than distracting too much from it) and I’m good at it. When I do well, I get prizes. Yay!

I also like that it’s very mission oriented, which for me means that I can play through a mission or strike in about 20 minutes, and then I have to pause. I might have to go talk to someone to get the next mission, or turn in my engrams (they’re like… virtual carnival tickets) to get my loot, or dump stuff I’ve got too much of, but it’s a moment for my brain to think, “Ok, that’s done.” I play one mission, and then I go do other things. I’ve had favorite games before that easily lent themselves to day- or week-long binges, and if I did that with Destiny, I’d feel so guilty that it’d ruin the game for me. This is a self-indulgent fun that doesn’t interfere with me actually accomplishing things, and that’s exactly what I needed from it.

I need fun. Plus, the game devs have a lot of fun with the game. This trailer, for a new racing bike option in the latest update, is exactly what I mean.

3. The support of people I mostly know online. Other writers, fans of my fiction, students of my workshop, clients, and people who just like what I have to say have been a constant source of happiness this year. From virtual hugs to holiday cards to emails and tweets — it’s all a reminder that I am part of a larger community that cares about my well being and wants me to write more, to succeed in life. Even though I didn’t get out to any conventions this year, and won’t for at least part of next year; even though I don’t live in a big city, and often feel cut off from the writers I’ve gotten to know… I’m not entirely absent from their thoughts.

I appreciate you all, so much.

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4. My son. I rarely post about him publicly because I generally think that’s a very bad idea, but I will say that he’s doing well. He’s taller than me now, which is something we’re both getting used to, and he’s trying to find his way through those awkward teen years that’d have been difficult even if he didn’t have a serious speech disorder and an an absent father and a mother who doesn’t make enough money to do much with him. He could be an angry, selfish, terrible kid… and he’s not. He struggles, but he learns, and he is kind when I need him to be, and he loves me without reservation. As hard as it has been to figure out what he needs and how to give it to him, and as much as I sometimes resent people who have it so much easier, I’m very lucky to have this particular child. He’s a good person, and I don’t ever want to let him down.

5. The Affordable Care Act. It saved my life.

6. My bullet journal. My person has been using this system for a couple of years. He would show it to me when I asked, but never pushed it on me. Never insisted it would change my life, or anything like that. It just worked for him, and he, quietly, like he does, went on using it. Earlier this year, I finally said, “I think this might work for me, too. Can you explain it to me?” Right after work, he came over with a new Leuchtturm 1917 journal book, and walked me through exactly how to make bullet journaling fit what I needed it to do. I’ve been using it ever since as a combination diary/to do list, and it’s helped me keep days sorted from each other, plus let me look back and see how much I really am getting done, on days where I feel like I’m slacking. I feel more organized and I’ve kept on top of things I know I’d otherwise have forgotten.

(Want to try it? Start here.)

7. Deciding on life plans for the next couple of years. We sat down  a couple of times this year, and talked through what we all needed (he, and I, and us together, and us with my son) and outlined the future. I’m making some big changes, and following through on some old plans. Right now, life is still hard, especially financially, but if everything goes according to plan, that’s going to change soon enough. Where I am in a couple of years should be dramatically different from where I am now, and I can’t wait.

8. My ADHD medication. If you need help to keep your brain, or body, functioning, there’s nothing wrong with that. Everyone is different, and while celebrating our differences is important and good, it’s also okay to realize that some differences might be keeping us from living — or thinking — the way we want to. As much as it’s acceptable to get a cast put on a broken leg, it should also be acceptable to seek medication for a disorder like ADHD, if it’s serious enough to impact your daily life. In my case, having ADHD is like trying to juggle a dozen different thoughts at any given moment, and forgetting half of them when I try to focus on any one. With the medication, I can hold on to a train of thought for long enough to act on it, and I stop doing things like burning food I suddenly forgot I was cooking. It doesn’t give me super powers, but it makes a big liability into a small one, so rather than trying to run a marathon while also being chained to an anchor, I’m trying to run a marathon while also feeling a bit lazy and wearing uncomfortable shoes. Things become possible, but I still have to do the work. Which, I think, is fair.

9. My midnight trip to Columbus, OH. I snuck away to join my person in Columbus, OH, for a day of touristy reminiscing about where and how he lived when he was younger. It was my only real adventure this year, a sudden, spontaneous, whirlwind of travel that involved more time on a bus (there and back) than we were actually in Columbus, but it was totally worth it.

10. My partner, my buddy, my love, my person. He knows why.

I hope you had people and moments in 2016 that were worth remembering, even as we celebrate this year finally coming to an end.

 

The ACA saved my life, and we’re about to lose it.

There’s a lot to say about the election of Trump to be our next President, and I’m going to say it all, soon. The thing that hitting me the most though, right this minute, is that if he succeeds in taking away the Affordable Care Act (aka “Obamacare”), I’ll lose my current insurance.

Congress already has a plan in place (from 2015) which would use the budget reconciliation process to gut the ACA with only a simple majority, which the Republicans have. No filibuster allowed; it’s over in one vote. From healthaffairs.org:

Both houses of Congress passed reconciliation legislation that would have repealed the premium tax credits; the small business tax credit; the individual mandate, the employer mandate; the expansion of Medicaid coverage for adults up to 138 percent of the federal poverty level, presumptive eligibility, maintenance of effort, and benchmark plans for Medicaid; and the ACA’s taxes—the medical device tax, insurer fee, “Cadillac” high cost plan tax, and tax increases imposed on the wealthy—most of the provisions that the public identifies as “Obamacare.”

Without the tax credits which would greatly reduce my payments for a different marketplace insurance — especially given my preexisting conditions — I can’t afford to buy a replacement. Trump’s proposals (Health Savings Accounts, insurers allowed to sell plans across state lines, imported medications from overseas, keeping your kids on it until 26) won’t help me at all.

As a freelancer — the only job I can hold while still caring for my son’s special needs — I don’t have employer coverage. I don’t make enough to put into an HSA. Buying from one insurance company vs another doesn’t mean the prices will be affordable; “affordable” for me is literally whatever I can avoid spending on food and heating gas for my apartment. I don’t have extra money for health insurance when the coverage I have is taken away.

I’ll be without.

Without the ACA-provided health insurance, I wouldn’t have been properly screened for my health issues this year. I wouldn’t have had surgery in June to remove part of my thyroid. They wouldn’t have discovered my cancer when it was still small and treatable.

If I hadn’t gotten health insurance through the marketplace this year, I wouldn’t be getting it next year under President Trump, and then maybe not for another 4 or 6 or 8 years after that.

I wouldn’t have survived that long with undetected cancer. The ACA saved my life. (And it was going to keep on saving my life by providing me with the health care I need to watch out for new cancer, the medication I need to manage my ADHD so I’m a more productive worker, and limiting the amount I spend out of pocket so I can still put a little food on the table.) That’s now in jeopardy.

I have to figure out how to pay for new insurance when the time comes because I need it. I have to survive this vile “leader” who doesn’t care if I live or die. So, I’m already planning and budgeting for a future under Trump.

If you want to, and can, help, please consider:

Thank you.

 

The 4 jobs I have (Other than Writing)

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As a freelancer, without a dayjob office to go to or set shifts, I end up working every day, and some days, weeks, blend together. To better organize my life, I track it — what I get done (and what I don’t), if I sleep, eat, take my medication, how I feel. With that data, I now know that my life is chronically overbooked, and most of jobs are unpaid. And, most of what I do isn’t what I wish I was: writing.

Freelancer: This is my dayjob (night job, weekend job). What I do for a living, the editing and content creation part, I love. The business side of it is hard, stressful, and I’m underpaid. (I don’t make enough enough month to pay my bills, putting me further into debt each month, and part of my job is to chase down more work, to remind clients to pay me… which doesn’t always happen.) I have some flexibility, though, which I badly need so I can do all of the other jobs I have, too.

Child care/advocate/special needs teacher: I’m the only parent and full-time caregiver for a very bright boy with a serious speech disorder, so I spend several hours a week being not only his mom, but his teacher, and the connection between him and the rest of the world. I have meetings with his school, his speech therapist, and the county agency that acts as the state intermediary. I interview and hire his staff, research therapies, take him to doctor’s appointments, manage his medication, and create different exercises to teach him new words in different contexts. Plus the parenting bit — feeding him and buying clothes when he grows and snuggling him when he’s sick. I’m happy to do it, no matter how much time it takes, but it does take time, every day, and I don’t have help to do it.

Housekeeper/Cook/Home and item repairs: All the things you need to do in order to keep your house clean? I do that. Cleaning up after a child? I do that. All the shopping, cooking, and figuring out how to feed us well on a small budget — which means lots of cooking from scratch — is on me, too. Because I can’t afford to replace anything, or hire anyone to fix things, I do all of that as well. On a given week this might be sewing up a ripped shirt, gluing a wooden chair back together, or  — this week — diagnosing a plumbing problem, ripping out a toilet (including cutting out rusted bolts) and replacing it with a new one, to save the labor cost my landlord would have charged. When you’re poor, you learn to fix a lot of things. I actually feel lucky that I’m capable of doing as much as I am.

Nutritionist/Trainer/Medical Care: There’s been a lot of this, the last couple of months. Surgery for the thyroid cancer, and then getting tested for everything my new insurance will cover, has meant changes to what I eat (anemic and lactose intolerant means more iron and less dairy, to start with). In the process of being sick, I put on almost 80 pounds I didn’t want, so now I have to get it back off, and learning to do that safely at this size has been a new challenge. I’ve had doctor’s appointments or blood tests almost every week for 3 months — this week alone I have four appointments and lab work. I have three daily medications (soon to be four) and a weekly one, that need to be taken at certain times, and a rescue inhaler for when I exercise. Like everything else, learning what’s causing me to be unhealthy so that I can work to be healthy takes a lot of time.

Between each of these “jobs”, I don’t leave the house as much as I’d like to. I don’t go out. I don’t watch much tv. I don’t read enough to make me happy, or sleep enough, or take a day off. Trying to find time to write fiction in the spaces these other tasks don’t occupy feels impossible, and my to do list is neverending. The stress over not being able to reliably pay my rent causes me a lot of worry, and honestly, I’m afraid on a regular basis.

But I love to write. I think it’s the thing that is going to matter the most, at the end of my life. It’s the way I can make a little bit of a difference in the world. Maybe a tiny difference, but I’ll take it if I can get it.

So, with every task and every worry I’ve got weighing me down, I still look for writing time every day. I’m not going to give up.

If you love writing too, you shouldn’t stop looking for time to write either. We can do it together.

Updates and News (August 2016 edition), or, Damn, That Was the Hardest Month

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In August:

I fell apart a bit.

I’ve said it before but this year has proven to me that the last 3 weeks of August (and the first week of September) are the hardest “month” of the year. That’s partly because of having my son home 24 hours a day without any respite, or break, or money to go out and do anything. His school year starts later than most; his first day back wasn’t until September 8, and by then, we were both ready for him to go.

We had to sit in our too-warm apartment all month — our landlord won’t let us put in an A/C unit — because it was too hot to be outside and at least we have some fans indoors. I still had to work as much as possible, and my hyperactive teen quickly became bored bored bored. With his special needs, I can’t send him out to play alone at the park, or go ride a bike, or any of the things I used to do to fill my summer days, all by myself as a kid. He’s an independent guy for the most part, wanting to play his video games or watch his favorite movies over and over for hours at a time. But even he gets tired of that much faster than I need if I’m going to put in a day’s work the way I can when he’s in school or camp.

The heat at the end of summer here is something I’m still getting used to. Growing up in California, we had heat. Hotter days. Lying out on the roof or in the grass that was dry and gone yellow, baking under the sun — my dog days of summer was late August dry heat, 100 degrees or more with no moisture in the air, and the utter joy of a sudden breeze. Here… it’s 90 degrees that feels like 95 because of 75% humidity and scattered rain every few afternoons that does nothing to cut the heat. I live in New York, but it feels like the summer I spent in Georgia, and like the bible school my aunt enrolled me in while I was there, I haven’t gotten used to it yet.

The best kid ever gets fidgety and then grumpy and then outright rebellious, given enough time trapped in a hot apartment with his mom who’s too busy and too poor to do much with him.

We did have one good adventure when I splurged on the gas on drove out to a Wal-Mart the next county over to do his back-to-school clothes shopping. Driving over the hills, the farms all green and growing, under a bright blue sky, the two of us played a game where we gave each other colors and picked out passing cars that matched. He got new clothes (not enough, but at least he wasn’t a shambles on his first day back), and a new haircut at the Wal-Mart salon (I didn’t even know they had those, did you?), and five whole dollars to spend in the arcade (I didn’t know Wal-Mart had those, either).

He was driving the Nascar game (of course) when a little girl sat at the Fast and Furious game next to him. She and her grandma couldn’t figure out how to get started, so Logan — silently — reached over and set it up so she could race the car she wanted, then went back to his game. Kid can barely speak, but he’s so smart and sweet and he didn’t just figure out what they were struggling with, but he wanted to help.

As hard as raising him is, and it is, a lot, my son always reminds me that he’s worth everything I do for him. Continue reading

Updates and News (June 2016 edition)

A new thing I’m trying out: I’m going to start each month with a quick list of updates, and news you might have missed. That way, I know everyone who follows me online has seen them, and I don’t have to plaster the internet with handbills.

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There’s. Just. So. Many. Bills.

Ready? Here we go…

In June, I had surgery to remove half my thyroid, found out I had (but no longer have) cancer, and spent most of the month recovering. I’m better now.

I finished the general education portion of school (mostly through transferring classes in, but some I took here), yay! Because I owe money to my college before I can register for fall, I’m putting together a small collection of my Mythos fiction. You can help me out by pre-ordering it via PayPal for $2, or donating to the fundraiser in exchange for rewards like podcasts and beta reads and art.

This collection will have 5 stories; two were previously published by Chaosium, and the other three have never been seen before. I’ve started sharing excerpts:

I still need $695 to make this happen, so please consider telling your friends.

In June I also sold three stories – two reprints and an original – to three magazines. I’ve signed contracts for two, so I shared the news about one sale so far, “One Echo Of An August Morning” to Kaaterskill Basin Literary Journal. Click here for more information on that.

I shared two poems with my readers last month. One was “Ephyra” – a short poem inspired by the place where mythic women and jellyfish meet. The other was “The Wanderer’s Lament”, an Old West-theme ballad in the style of cowboy songs. I posted that to my Patreon page, unlocked and open to the public. You can read “Ephyra” by clicking the link, and over here is the “The Wanderer’s Lament“.

In other, not good news: I’ve no work for July, and bills/rent already [past] due. Time for a sale on editing services! I’m experienced, available, and desperately need to fill a last minute cancellation, even book ahead, so I’m offering 50% OFF EVERY EDITING SERVICE. You can find me at  or use my contact form here.

If you like my work as an editor, please share this sale with anyone who might be interested.

I’m in a hard spot, financially, that I haven’t been in for a while. It’s tough not to feel as if it’s one step forward, two steps back, but I know overall life has been better lately, and with the medical stuff out of the way now, I can focus on work. Writing, editing, making a career and a name for myself. If it seems like I’m trying to monetize everything I can, well, I am. I’m doing every kind of work I can do under the circumstances to support myself and my son; freelancing, side gigs, the Mythos project, you name it. I hope there’s something in there that appeals to you, that you can support.

Now, on to July…

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3 Weeks Post-Surgery: Mostly Good (Even the Cancer Part)

Three weeks ago, I went to the hospital for surgery. They removed half of my thyroid, because it had developed nodules (what they call thyroid tumors they suspect are benign) and had swollen up enough that it pressed against my trachea, and the nerve that controlled my vocal cords. I was having trouble breathing, at times, and my voice had started to go froggy. Of course, there was the year, going on two, before that of me starting to go downhill physically  – tired all of the time, gaining weight, struggling to stay on task or complete things on time – but after dealing with a doctor who insisted it was just me being a woman, getting older, I’d found one who was actually willing to do lab work and sort it out. I was diagnosed with anemia, and started medication for that. Aside from the pressure on my throat, I should have been on the mend.

I didn’t quite feel it, though. A little better… but still, something was wrong.

We agonized over the decision to cut out part of my thyroid. It’s a simple, safe, outpatient procedure, except that it’s still surgery, which is never guaranteed 100% safe. My SO and I talked it over, made plans for dealing with what would come next if I didn’t make it out okay, and decided (supported by my surgeon’s opinion) that it’s better to get the swollen part of my thyroid out now before it got bigger and did some real damage. I felt it, a literal lump in my throat, every time I swallowed. Every time I tried to exercise and had to breathe harder. When I laid down for sleep, and the lump shifted a little, pressing on a new spot I hadn’t yet learned to ignore.

Your thyroid is a butterfly-shaped organ that lies flat, for most people, and has the volume of a peanut on each side. My right side wasn’t visible from the outside, so you wouldn’t know unless you saw a sonogram that it was the size of a jawbreaker, and growing. Inside were two nodules; the bigger one had been biopsied three times since it was found three years ago, and declared benign, though I was told in 2013 that it was collapsing and would get smaller – we discovered in May that it had actually gotten larger.

The smaller one was labeled “suspicious” by the sonogram tech during this round of tests, but was .1 mm too small for a biopsy to be considered necessary, according to the current medical guidelines, so I was told not to worry. We’d wait, they said, and check on it again next year.

If I hadn’t opted to remove the larger side of my thyroid, that nodule would still be there. Continue reading

Next up, surgery…

After a sonogram and two biopsies, we’ve confirmed that I have multiple thyroid nodules that have swollen one side of my thyroid to the size of a jawbreaker. It’s not visible from the outside; if it were a cosmetic issue, I could put it off, but my thyroid has grown inward, so it’s pressing against my vocal cords and throat. It doesn’t keep me from eating yet, but my voice has gotten a little froggy, I get sick more often lately, and when I’ve been sick, it’s taken longer to recover (I had bronchitis last fall for more than 8 weeks, for example.)

The biopsies showed that the largest one is benign (yay!) but growing, and there’s a smaller nodule that’s “suspicious”. Because of all that, I’ve scheduled surgery to remove that part of my thyroid.

This, plus finding out I’m anemic, explains a lot about my health and energy levels the last year or so. I’m taking supplements to correct the anemia now, and with the surgery, I should be in better shape. I hope. I have too much to do, and I’ve been struggling to manage it all. It’s a relief, in some ways, to know why: I’m not lazy, I’m not a failure, I’m not giving up. I have a documented medical reason for why I’m exhausted and uncomfortable and falling behind.

Still, sometimes I have to tell myself that over and over, and it doesn’t help. Excuses, excuses, what are you going to do about it? Next up, surgery, and then getting my life back on track, and moving forward.

I can’t accept anything less.

Medical Update, or, So That’s What Happens When Your Blood Doesn’t Get Oxygen

Tl;dr: I have severe iron-deficiency anemia that went undiagnosed for the last couple of years. I not only don’t have enough iron in my blood, I lack ferritin, the protein that allows your body to store iron. Because my body won’t reserve enough iron from meals, I have to take in new iron every single day, and will for as long as I live, if I want to keep, you know, living.

After losing my health insurance along with being laid off last year, I got new health insurance in 2016 (thanks, Obamacare!) and last week, got into a new doctor’s office. I knew, before I went, that I was going to want to talk about my health and the way I’d felt it was going downhill the last couple of years. I’d done a lot of hard work to get in shape, to eat healthier, and I was getting there. Two years ago I was only 40 pounds away from my goal, and expected to be there by the end of 2014. I was walking an average of 5 miles a day, doing cardio and yoga and lifting a little free weight at home, starting to buy clothes I really liked to wear. Then, it all sort of fell apart. I was exhausted, constantly, sometimes sleeping 10 hours and then still having to take a nap in the afternoon. I started to be short of breath. I stopped walking so much. My skin got dry; my nails became ridged and brittle, and my hair started to tangle easily, even when it was short, to the point that I kept it tied up or under a hat most of the time. The dark circles under my eyes got worse. I was struggling to do everyday things. I got dizzy when I stood up too fast, and sometimes my fingers tingled like they were asleep. My hands and feet were very cold, and I noticed I was turning the heat on more than before.

I’d also talked to my old doctor about the same symptoms and his response was literally, “You’re getting older, so you’re just going to have to get used to that.” That didn’t seem right to me so I insisted, in a followup appointment, that no, really, there’s something wrong. Old doctor then said I was probably pre-menopausal, at 41, with no family history of that. I said it didn’t seem likely, so he ran tests, and found that no, that wasn’t my problem. He told me then to sleep more (I was already sleeping too much). He said I was probably depressed. (No. I’ve seen a therapist when I’ve felt I needed it before, and I wasn’t afraid to do so again. That wasn’t the problem.) He said I needed to eat better and exercise more and, again, to just accept that I was slowing down because I was a woman, and I was getting older.

The last appointment with him was a year ago. Knowing I had a chance to get the new doctor to maybe pay attention to my concerns, the night before my appointment I sat down and wrote out my medical history, and every symptom I had now. I printed out my calorie intake, sleep, and exercise logs from my fitness tracker.

When I went in to the office, two things happened:

  1. New doctor saw right away that I hadn’t been sent in for a followup thyroid ultrasound, even though it was in my file that I needed to get them every year or two after the (benign) nodule we found in 2013.
  2. He looked over my info, heard my frustrations, and promised to run every test we needed until we figured out the problem.

He took my vitals, and told me what he wanted to look for. My resting heart rate was 93 beats per minute, unusually fast, especially for someone who always felt sluggish. My lungs sounded clear, so it was unlikely an obstruction was the cause of me feeling short of breath. He asked if I’d always been so pale. He ordered labs. I fasted overnight and went back in the next morning, where they took 6 vials of my blood, to test for iron, and thyroid function, but also cholesterol, and various vitamin deficiencies. He added the test for ferritin, which I hadn’t heard of before.

And he let me know that my thyroid felt swollen and lumpy, a sure sign that I’d developed another thyroid nodule. We scheduled a sonogram for this week. (I’m hopeful it’s benign, like the last one; some people just develop these non-cancerous thyroid tumors without it affecting much else. My thyroid hormone levels came back okay, which is another good sign that the nodule is just annoying, and not dangerous.) But…

It turns out that I’m anemic in a big way. Like, wow, it’s impressive that I’m as healthy as I am, considering. I have very low hemoglobin, Mean Corpuscular Hemoglobin, Mean Corpuscular HGB Conc and very low serum ferritin scores. In addition to taking iron supplements, I’m also taking daily B12 to help with the absorption of iron. Unrelated, but my vitamin D levels were also so low that I was prescribed a mega dose to be taken once a week for 12 weeks, with a smaller daily dose thereafter. I live in the frozen north, so lots of folks around here have lower D levels than usual, but my doctor said, “If I tested everyone in town, 98% of them would have low D, and you’re at the bottom of that group.”

It’s going to take a while for everything to kick in, and we’re going to monitor it closely over the next few months to make certain my health improves. I’d always thought of anemia as you’re a little pale, go eat a steak and you’ll feel better. (This diagnosis might explain why eating a good cheeseburger really did make me feel great, for a few hours.) In my grandma’s time, people with serious chronic anemia used to develop pernicious anemia and then die, and I’m hoping to avoid that. These days, with medical care, it should be that I simply take a pill for what my body doesn’t have, and then I’ll be fine. I can do that.

But I’ll be damned if I let a doctor tell me I’m just a woman getting old, ever again.

The Quest For Sleep

Since leaving my day job, I’ve had severe insomnia. I assumed it was stress related, and worked on reducing my stress, but also cut down on caffeinated sodas (which has other health benefits as well).

But I’m still not sleeping. I have good days, a couple of good nights of sleep, and then I lose control of it again. I either am “awake” during the day, but too tired to do anything useful, or I sleep poorly during the day and am up late, exhausted and useless. Finally, I talked to my doctor, and we did a bunch of tests.

He thinks there are two main culprits: my ADHD, and a couple of decades of bad habits with caffeine. I have had insomnia my whole life… (Ironically, several months ago I gave up the medication I was taking for my ADHD, because it was too expensive, and kept me up at night.) Most likely, my current bout of insomnia isn’t actually new.

My doctor said that my day job helped mask the serious sleep deprivation by giving me structure. I had to get up at the same time each day, without the option of going back to sleep during the day, so I compensated by consuming several caffeinated drinks each day. And, in the evening I was pretty much useless. But at least I was going to work. Once that was gone, I lost my anchor. And giving up soda cut down on how much caffeine I was drinking, which made me more tired —

Why didn’t that help me settle into a good night’s sleep? Because I push myself too hard. I forced myself to be awake to get things done, and compensated in unhealthy ways: more coffee, and overeating. Both of which interfere with sleeping, too. See, caffeine stays in your body up to 24 hours, and when not keeping you awake, it can still keep you from resting, by making you wake up more often during the night.

The solution is to make a big change, and then give it time to work. (It’s the being patient part I usually have trouble with.) The plan?

1) Get up at the same time every day, even when I’m tired.

2) Go to bed at least 7 hours before the alarm is set to go off. (8 is better.)

3) Start the day with one caffeinated drink. And that’s all. No more! Not at all, not the rest of the day. None.

4) Resist the urge to nap, eat too much, or caffeinate during the day.

5) Whenever possible, if I feel sleepy during the day: exercise.

6) Accept that I am going to be tired for a week, maybe a couple of weeks, until I get settled and my sleep cycle resets.

Now that I’m going back to freelancing, that last one is the hardest. At a day job, if I struggled through sleepily and was a zombie at night, okay, I’m still getting paid. When I work for myself, if I take time off to be a slug, not only do I feel lazy and useless, but I’m not making any money. I can’t afford to take time off.

But I’m going to be 42 this year. I’d like to be just hitting the halfway point of my life, instead of nearing the end — and if I don’t stop the “quick fixes”, who knows how badly that’s affecting my health? I have a chance to turn my life around now that I may not get again any time soon. In that case, it’s an easy choice.

I’m setting my alarm, going to bed early tonight, and getting up on time tomorrow. I’ve got a caramel dessert-like coffee drink waiting in the fridge. I’m giving myself permission to take it easy this weekend, and next week too. Maybe next month, if I have to.

They say you can’t put a price on your health. I’m about to trade my income for my self, and find out.

Boskone Recap: So You’re on 4 Panels and No One Knows You’re Going Deaf

Two weeks ago, I attended my first Boskone, and I had a great time. It was the best mix of fun and friends and panels – four of which I was on as an invited panelist – and there was really only one big “oh hell no” moment of the whole convention (more on that later). But before I can talk about the drive, the food, the hotel, the wonderful people, I have to talk about something I’ve been avoiding:

I’ve lost a lot of my hearing in the last few years and I can’t hide it anymore.

To begin with, I wasn’t purposefully hiding it. A few years ago I’d noticed that I wasn’t hearing as well as I thought I should, and had it checked out. After a hearing screen revealed a significant amount of loss, I had more tests, saw specialists, had an MRI, and was diagnosed with otosclerosis. I looked at the treatment options, which basically consisted of surgery, and decided that I could live with where I was. Rather than have someone stick a scalpel into my ear and wiggle it around, I’d just accept and adapt.

That worked fine for a while. I learned to take seats up front in class, make sure I was facing someone when they spoke to me, and got much better at reading lips. Compared to the disabilities many people have to live with every day, this seemed like an annoyance but not truly disabling. Except that otosclerosis doesn’t get better over time, or even level out. It gets worse, and mine got worse faster than I was hoping.

I’ve lost 70% of the hearing in my right ear and 40% in the left. I’ve lost mainly low tones – which cuts out people speaking, especially men. I’ve lost enough that I can’t play the violin anymore, and after it sitting in my closet for a year, I donated it last week. I can still hear my son speaking (his little kid’s voice is high-pitched still, and he tends toward being loud anyway) and music when loud enough or I’m wearing headphones to cut everything else out, but I get startled easily because my boss has walked up behind me and I didn’t hear it. I have to say, “I’m sorry, what?” or “Are you talking to me?” on a regular basis. I’m starting to speak too loudly or too quietly because I can’t tell the difference; in my head I’m still the same volume as before. It’s difficult for people to tell how much I can hear when they can see that I still notice higher pitch sounds coming from the other room, but don’t always understand what they’re saying to my face. In addition to all of this, I get intermittent ringing in my ears as I lose new tones, and the fuzzy white noise of my own blood moving through my head can be very loud at times, and sometimes I lose all sound/sense of space on my left entirely.

Having people assume you’re not bothering to pay attention is hard enough when it’s coworkers and friends. What about when it’s late at night and you have to ask someone sleepy to repeat what they just whispered, and what you missed was, “I love you”? My persistent (but totally unfounded, I know) worry is that someday they’ll get tired of saying it twice.

Boskone really brought the depth of this problem to the forefront. Being on panels meant I had to position myself at the far right of the table, so the other panelists would be on the side most likely to be audible, sometimes after other panelists had already taken their seats. (Everyone was very nice about moving once I explained.) I didn’t hear the entirety of the conversation up at the panelist table, and I didn’t hear almost any of the audience questions, because there wasn’t a mic for the audience members. I smiled at more than one person, when hanging out in a group of friends, hoping that was a suitable answer to what was probably a comment aimed at me. I participated in the Sunday morning flash challenge, but lost points when the judge on the end couldn’t hear my reading since I’d spoken too quietly without realizing it. A man standing next to me on an escalator said something I couldn’t hear, and when I said, “I’m sorry, what?” his response was “Don’t worry, it wasn’t sexist.”

He’d assumed I’d heard him and just didn’t like what he’d said. That happens a lot.

So. Now what?

I’ve told my work that I have this issue, and we’ll see if that helps there. I’ve started the process to schedule the surgery, which scares me but at the same time I no longer feel that I have a choice. The surgery isn’t guaranteed to fix my hearing, by the way. It doesn’t guarantee anything, but if it’s successful it will most likely only stop (for now) or slow the progress of my loss. I’ve started telling people what’s happening with me, so that at least I’m not offending people who don’t understand that no, really, I’m not ignoring you on purpose. (Those who know and choose to be jackasses are not my problem, but so far, that’s not been many.) I’ll continue to work to make it easier for me to understand others, including moving my work desk this week, making sure I’m facing people when they speak to me, and being honest about what I can hear and what I can’t.

What can you do?

If we’re at a convention and you’re on a panel with me, sit on my left. If you’re moderating the panel, please repeat an audience question before any of the panelists answer it (not just for me, but for the rest of the audience, too). If I’m speaking too loudly or too quietly compared to the rest of the people in the conversation, assume I don’t realize it and let me know. Move to where I can see your face if you’re speaking to me, or do something to make sure I know you’re speaking to me (instead of someone else in the group) before you address me. Saying my name works just fine, and so does tapping me on the shoulder or arm.* Know that listening to one person in a quiet room is vastly easier for me than listening to one person speaking as part of a group of five or twenty people speaking all at once, or in a crowded bar or hotel lobby. This means that you might not have to make any adjustments when we’re hanging out alone but suddenly have to be more conscious of how you speak to me in a restaurant.

Remember that I want to hear you, I don’t mean to be ignoring you, and I don’t mind putting effort into making our conversation easier, if you just let me know that you want to be heard.

I hate the idea that I’m making anyone go out of their way for me, and if it only impacted what I heard/understood, I wouldn’t be publicly saying this at all. Unfortunately, my hearing loss has started to affect what others think of my opinion about them, and I don’t ever want to make a fan or friend feel that I just didn’t bother to listen.

Thank you.

* I know this opens me up to being touched by strangers, which isn’t ideal at all, so please use your best judgement about whether tapping me on the arm is really the only way to get my attention at that moment. If it is, and you’re polite about it, I’ll understand.

Edited to add: Someone mentioned this on FB, and I agree. Please do not say, “Oh it wasn’t important,” when I ask you to repeat yourself. You’re assuming that I didn’t want to listen the first time, and you’re feeling slighted when in fact I just couldn’t hear you and actually want to know what you said. And then you’re making me do even more work to coax it out of you, because I don’t want you to feel slighted, and I do want to be a part of the conversation. Plus, refusing to repeat it means you’re excluding me from being able to continue as a part of the discussion, and deciding for me what is and isn’t important to me. You’re important to me, and I wouldn’t have asked you to repeat it unless I did really want to hear it the first time.

#SFWApro