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Twenty things about me

I thought I’d play a game I’ve seen floating around, and tell you twenty random things about me. This is totally off the top of my head…

1–I’d love to be a cake decorator/pastry chef.

2–I can’t sleep unless my room is super cold, much to the irritation of everyone else in my family when I keep turning down the thermostat.

3–I’m a Ravenclaw. (I’m wearing a Ravenclaw tank top right now, actually.)

4–I love two truly terrible movies–Deep Blue Sea and A-Team.

5–My house is fully of my photography. I have two walls of family photos and two of travel photography (soon to be more).

6–Taking cannabis has altered my quality of life dramatically. I have fibromyalgia and without it, walking is painful. Most things are painful. Taking cannabis pills alleviates a lot of the pain that my medication doesn’t.

7–I can’t draw for shit. Stick figures are about the most I can handle.

8–I used to be a teacher. I loved teaching the kids–I hate the politics, which is why I probably won’t go back.

9–I was a huge Baby-Sitters Club fan as a kid. I identify as a Kristy.

10–Even though I’ve lived outside the US, I never flew on an airplane until I was 20.

11–Next month will mark my twelfth wedding anniversary.

12–If I could have picked my own name, I’d pick Katherine.

13–My favorite candy is Reeses Peanut Butter Cups.

14–I’ve reread the Jewels series by Anne Bishop a ton of times. I’m so upset by everything going on in the US right now that I’m rereading them for comfort.

15–I hate coffee.

16–I love Disney–the movies, the animated movies, the music, the parks, all of it.

17–I keep meaning to write some Star Trek Voyager fanfic because the series finale has some serious issues. Janeway and Chakotay forever.

18–I almost moved to New Orleans, but I’d just met my husband and wanted to see where things would go.

19–After leaving a small town as soon as I could, and living in cities for the past twenty years, I’m shocked by the fact that I like living in a suburb.

20–I play violin. I started taking lessons in Singapore, but had to stop because I hurt my shoulder. I’ve just recently started playing again, and now both my girls are starting to learn, too.

Summer

Tomorrow my baby graduates from kindergarten and the school year ends. This is a time of year that I am quite conflicted about. On one hand summer means that we don’t have to adhere to a tight schedule, and I don’t have to police homework or bedtimes. On the other hand, it is about to become immensely more difficult to get writing done.

June is actually almost a complete disaster, writing-wise. I’m going away with the girls on my own for two weeks to the East Coast, and then when we get back I’m having surgery. Nothing serious, per se, but I’ll still be out of commission for a week.

On the up side (?) my research for Plunder is coming along.

I’m on my fourth research book. I’ve read about ships, pirate myths vs reality, the history of rum, and now another book on pirates. I’ve had to go and correct an embarrassing number of things already, and it’s only the start. An example is that pirates did not wear boots. I have multiple books on race and slavery in the Caribbean, and I’m trying to think of a way to include those important details without either creating a white savior or ignoring them altogether.

As long as I can read and take notes, which I will be able to do, then hopefully I’ll be making some forward progress.

But the balance between family and work is going to go out of balance, and I’ll need to find a way to move forward. I get cranky and antsy when I’m not writing.

With the holiday, I’m only posting Tues and Thurs this week, and I hope to go back to Mon/Wed/Fri next week.

Almost Normal

I got out of the hospital twelve (?) days ago. In that time I’ve begun to navigate the hallway from my bedroom to our living room without a cane. I have brief moments (usually when the painkillers are at their peak) of almost normal.

finding dory

I haven’t been in good enough health to go to a movie since Deadpool. While this apparently saved me from one of the worst superhero movies, ever *cough*BatmanVsSuperman*cough* it has  also kept me from seeing Captain America: Civil War and the new X-men movie.

I am a huge fan of Disney and Pixar. I loved Finding Nemo. I saw in in a movie theater by myself in New York long before I had children. There was no way I was missing out on Finding Dory. Plus I guess my kids might like it, too.

(Digression–the pediatric dentist my girls have seen for the past six years was Australian and could have been a voice double for the dentist in Finding Nemo. I found this hilarious every visit. I’m so sad he retired.)

This past Saturday, in an act of hubris, I decided we were going to the movies. I was in my wheelchair, and things were great until I picked our seats. If I could handle the walk to the living room without a cane, I could surely make it to our usual front seats with my cane, right? Yeah, no. It sucked going down (that’s what she said), but trying to climb the stairs back to my wheelchair felt like ascending Everest.

I spent the next twenty-four hours flat on my back, counting the minutes until my next painkiller.

mbs destroyed ID42

Here’s the thing. I don’t think I’ve quite learned my lesson because I need to see Singapore’s skyline get destroyed in Independence Day: Resurgence. I think I’ll just use the wheelchair seating at the back, or sit near the back.

I need normalcy. I don’t know how well these surgeries will work. But I can’t just sit in my house and give up before I’ve even begun. Figuring out how to have a life, to carpe lucidity—to seize the moment and get work done in my window of lucidity each day, despite my health issues is  some of the best medicine for my soul.

PS-Finding Dory is charming–A.  Stay through the credits for a great post-credits scene.

Home

Hi all

Thank you for the many well-wishes during my ten-day hospital stay following my back surgery. I won’t really know if it actually worked for four to six weeks, during which I am wearing a support garment around my middle, and walking with a cane. Sexy. Super Super Sexy. Don’t all Agaproposition me at once.

I am still on a number of narcotic painkillers and other medication which make me muddled and sleepy. I’m having a hard time concentrating enough to write this post (and for all that I know, it may come out garbled). Please be patient with me, and I’ll make my return to blogging sometime this week.

In my (short) periods of lucidity, I read through my first draft of Plunder and added comments. Given how drugged I was (am) I didn’t trust myself to actually try to edit the novel, but I think I do at least have a sense of what needs to be done to improve it.

Again, thank you for all your support during a difficult period.

much love

Delilah

Sometimes there’s no such thing as a good choice

DSC_1783

Greetings from a hospital in Singapore. This is my sixth or seventh time here in three years. With one exception, every hospitalization has been because of my bad-and-getting-worse-low-back.

Without getting into medical terminology, I first hurt my back when I was sixteen and because it wasn’t really properly cared for then (we didn’t have health insurance) it didn’t heal properly. Over the years it became progressively worse.

Ten years ago this October I had surgery on a herniated disc that was compressing the sciatic nerve root (which runs from your back down your leg into your toes) to the point where the nerve hurt so much I literally could not walk.

Three years ago this past March, I was putting my second daughter (who was just over a year old at the time) into her stroller from the car seat and the disc above the one from ’06 tore.

In the past three years I’ve gotten so many MRI’s I’ve lost count. I was excited that on my last two visits the hospital I go to can pipe music into the headphones they have you wear while getting the MRI from Spotify, so you can request your music. I can sleep during an MRI, but this last time I quietly sang along to Hamilton in my head for the hour or so it took to do my full spine.

We know that my back is a disaster as is my sciatic nerve, but we don’t know the full story. Scar tissue isn’t visible on any imaging system, and can compress nerves and create persistent pain with no easily diagnosed cause.

Six days ago I had eight injections at various levels of my spine to deal with four disc herniations (two in my back, two in my neck) and three surgeries (two for my low back discs and one to deaden the sciatic nerve).

Were any of these the right call? I have no idea.

I’ve been living in chronic pain for the past three years, but the past six months have been the worst. A “good day” became one where I had enough energy to drive to my daughter’s schools and pick them up. My daughters even know to avoid the right side of my body as even a casual hug at the wrong moment can lead to severe pain.

In doing one of the surgeries, my doctor confirmed that there is a lot of scar tissue, because he could barely force the needle into the disc to perform the nucleoplasty. (In layman’s terms, they burn out the center of the disc and the idea is that the disc will shrink back down).

I carry a lot of guilt that I’m not the mom I wish my kids had. I can’t get on the floor and play with them. I can’t run around outside. If I’m lucky I’ll be able to swim with them again (which given that we live near the equator is a year-round activity). My days of roller coasters and waterslides are behind me.

Six days into my hospital stay I’m asking myself if I made the right choice, but honestly–sometimes there is no such thing as a good choice.

wicked wednesday

Fearless Hair

Ever since I first saw a bottle of Manic Panic hair dye in the early 90’s, I wanted to dye my hair. I wanted a bright blue streak. I wanted to dye my hair crazy colors. I wanted to use my hair as a canvas.

manic panic

So why not do it? For a number of years I couldn’t because my workplaces didn’t allow “unnatural” looking hair. The rest of the time? Fear. Mostly I was afraid of people looking at me.

As someone who isn’t thin, I’ve learned toxic messages. I’m supposed to fade into the background and not call attention to myself. That if people looked at me, they would only do so with the worst intentions. Neon hair pulls focus, and I was afraid of it. I’ve gained confidence over the years–I’m well aware of my great legs (see my twitter icon), I rock sexy librarian glasses, and I’m generally at peace with myself. Which is not to say I’m comfortable as the center of attention.

As someone who often feels like a fake in my upper middle class life, I wanted to fit in. I feel like a fake because I grew up poor and I’m the first person to go to university in my family. My mom is a single mom and I’ve never met my dad. However, I’m educated and well spoken, so people assume I have a background similar to the one I currently am lucky enough to have. I have cultivated a very proper exterior, which means I’ve done nothing more daring than blonde streaks in my hair as an adult.

I don’t hide that I’m queer, but as someone in a marital relationship with a person of the opposite sex I pass as straight. I use a pseudonym for my erotica. I don’t draw attention to myself as a whole.

hair 9

About three weeks ago my hair started falling out in clumps.  It’s always been thin and fine and not particularly voluminous. So when I looked into the mirror and saw the glint of my own scalp peering out at me between increasingly spare strands of hair, and when someone I was skyping with asked me if I’d gotten fades shaved into the sides of my hair I felt more exposed and vulnerable than ever. Now, not only had I committed the cardinal sin of daring to be fat in public, but I was even less attractive than before.  Fear took over because I had no real options other than to wait the hair loss out–it’s a very common side effect of severe medical trauma called telogen effluvium and the only real solution is time.

I realize that this was all taking place in my head, but that doesn’t make it any less real.

hair 8

 

I’ve cried so much this month. Granted that’s partially because blood work showed that I have severe deficiencies in a number of vitamins and hormones. Off kilter hormones are a bitch, and among other things will make you weepy. But it’s also because despite the fact that I’ve never loved my hair, I never wanted to have it fall out. But along with the tears I’ve felt a growing rage. Mostly at myself.

hair 7

 

How dare I have let myself get ruled by fear like this? For what purpose? Did I really almost die without ever having done something I’ve always wanted to do because I was scared? And now I’m being ruled by fear that people are staring at my thinning hair?

I have zero fucks left to give.

If they’re staring, let’s give them something to look at.

Let me do what I’ve always wanted to.

My colorist warned me that stripping the color from my hair to bleach it could make it break. Well, there is no better time to be blasé about that possibility than when it’s already falling out. Luckily, given a lighter bleach and toner, it was as healthy as it was when I walked in the door.  With the addition of color, it looked even better.

hair 6

 

 

 

Today I smiled one of the biggest smiles to cross my face in the past almost four months. My husband thinks it’s sexy, my daughters think it’s cool (Ms. 3 kept trying to force the cat to see my hair, which makes me glad that “her” cat is extremely easy going), and I feel like I’ve given all the hair related tears of the last month the middle finger.

To be fair, there’s part of me that’s a little concerned about what happens when I have to go be a parent at school. Singapore is super conservative (once my colorist realized exactly how crazy I wanted to go, he was thrilled because he rarely gets to do so here). Will the vice principal take me seriously when I’m complaining about a boy bullying Ms. 6?

But that’s a small voice, and once that will quiet with time.

hair 2

The hormonal stuff and vitamin stuff are harder to deal with. Like regrowing the hair that fell out, it will take time to resolve. I’m taking supplementary vitamin and hormone therapy and we’ll repeat the blood work in a few months.

What has gotten me down the most about this, apart from feeling unattractive about my hair–the outward issue–is that every time I think I’ve put my illness behind me, some new side effect rears its head. The septic shock and threat of death were over in April. The crappy immune system, the lost muscle tone, the lost core strength, all of those were starting to resolve and were things I could actually fix. Each week I swam I saw muscle tone returning to my legs. I was ready to move on. Then I got blindsided by the hair loss, which was the motivating factor behind getting blood work done. Having gotten the blood work done, I now have the new host of issues to deal with. While it’s good to have a label to apply to the problems that were already present, it also feels like I’ve been dropped back at the starting line of the world’s longest marathon all over again.

hair 3

I’m not actively worrying about this, but I also know that if my hormone and cortisol levels don’t improve in two months, I could be looking at a round of tests to see if my adrenal gland has stopped functioning properly. So while it’s not something I’m obsessing over, I’m wary of what might be next in the unending list of what happens after you almost die from septic shock.

The hormone I’m deficient in is what controls the female sex drive. Which is a cruel joke for nature to play on an erotica author.

As I said in my last entry, I’m coping with a lot of personal, medical drama. I’m going to cycle between present and absent on social media, and between productive and unproductive when it comes to writing. I appreciate you guys sticking around while I deal with this. Unfortunately this is one of those things that will resolve over a long period of time.

hair 5

But at least I have cool hair.

My spine sucks and other true tales

Although my preferred genre is erotica, at the moment I could easily author a series of essays and package them as a book entitled “My Spine Sucks and Other True Tales.”

My spine has sucked since I was 16 years old and got injured playing tennis my junior year of high school.  I jumped up to hit an overhead shot and when I landed, I fell and hit my tailbone, hard.  I didn’t go to the doctor because of a mixture of youthful invincibility and the reality of being poor and either uninsured or only having crappy welfare insurance.  That summer I got a job bussing tables at a restaurant, which meant I was hauling around super heavy buckets of dirty dishes, which did no favor to my already injured back.  Weeks before senior year began, my back seized up and I finally took it seriously enough to see a doctor, who referred me to a physical therapist.  My physical therapist gave me exercises and a lumbar pillow I was supposed to use any time I was seated.  Not that I wasn’t a giant nerd with no hope in the universe of EVER being a cool senior, but carrying the lumbar pillow around from class to class underlined, bolded and italicized that lack of coolness.

I would diligently do my physical therapy for a few months until I felt “better.”  Then I’d happily drift about my life for a few years, only to have my back start to spasm and seize up again.  Rinse and repeat.

In 2006, weeks before my wedding, I herniated a disc in my spine after I spent a day hauling boxes of books out of my classroom.  I’ve been known to joke that my wedding shouldn’t count because I was high on vicodin and drunk on champagne at the time. Which was the last funny joke I can make about the next few months of my life.

Within eight weeks of our wedding I was confined to bed in our guest room, waiting for my surgery date, high on an absurd number of painkillers and sex was a thing of the past.  I could still get to the bathroom, but only if I used a walker.  I hit one of the lowest points of my life when I had to ask my partner to wipe my ass after defecating.  Admitting that publicly is perhaps one of the few lower points than the actual experience.  Within twelve weeks of our wedding, I had surgery, and while the back pain relief was immediate, we had to wait another six weeks to have sex again.  This is not exactly an ideal honeymoon/start to a marriage.

In the intervening six and half years since that surgery I’ve had two bad episodes with my back, but luckily both were short lived and easily dealt with between a few days on vicodin and some physical therapy.  And, as always, after a time, my dedication to and interest in doing my physical therapy waned and disappeared.

I am not, as a rule, an “exercise” kind of girl.  I don’t like sweating.  I find it boring.  I’ve tried classes, personal trainers, you name it–it’s just not my thing.  For some people, that’s something they can get away with.

I can’t.

Early on in this month, I was doing the very mundane task of putting Ms 1 into her stroller…and tore the disc directly above the one I’d had surgery on in 2006.  I ended up in the hospital for a week.  I was released and felt as though things were getting better with the minor exception of a terrible set of side effects to a medication.  My doctor took me off that medication. Twenty four hours later I was back in the hospital.  A week later I received cortisol injections to try to calm the nerve pain that was rendering my legs close to useless.  I came home Thursday.  I would not say that things are getting better.

This month has been one long frustration of medications that make me too muzzy headed to focus, pain, fear about my ability to parent and partner going forward, separation from my kids, family flying in from the states to help out, and a lot of self pity.  There is some chance that over the next two weeks I am going to have to make a decision about surgery.

This has also been a month where connecting with my partner hasn’t been easy.  Emotionally, yes.  Physically, no.  You can imagine then, how my writing has been going.

As a rule I don’t tend to ramble on about my personal life here, but as I deal with these developments, I think I am going to have a lot to say about sex and disability, so I’m going to go with it and talk about it.