Ehlers-Danlos syndrome

I find myself going through a lot of stages with grappling with this diagnosis. Most of them involve anger, rage, even… Not at the syndrome, but at how I was treated as a child. I keep flashing to things… like having pronounced leg pain and not wanting to walk, and being told I was “making it up for the attention”. I was four.  Being the slowest runner in any class… and being told I was just lazy and that I needed to “try harder”. I’d try harder…and my ankles would go out, and I would fall, and then I’d be told I had done it to get out of running, and that I was making it up.

“You’re so flexible.” Yeah. Great for party tricks when you’re a kid… as an adult, showing off that flexibility hurts every time. I guard everything, and become paradoxically stiff because I’m putting so much energy into holding myself together. It did not dawn on me, oddly enough, until I was in my 40’s, that this is different from how most people experience the world.

IBS… gut is made of collagen. Mine is wrong. IBS is common in EDS.

Allergies (see gut is made of collagen and mine is wrong…)

The stretch marks that riddle my body. The weird texture at the bottom of them.

My fingers… handwriting always terrible, told I wasn’t trying hard enough, wasn’t concentrating enough.  “You’re holding the pencil wrong”. I fix my grip, my finger stays for a moment and then bends backwards. I adjust to something that sort of works. I’m told my handwriting is terrible and I’m holding the pencil wrong. Typing is a godsend. Typing is easy. When I can type my notes, I can actually take notes because I’m not pouring every single ounce of attention I have into holding the damn pencil.

Fibromyalgia… except that unlike most people with fibro, I don’t have constant pain. But every other symptom. Oh, right, those are all co-located with EDS, which explains more than the fibro.

You know solarcaine? Yeah, that shit never worked on me much. Nor does Lidocaine, or novocaine… The doses they’d use to get something approximating enough numbness to do dental work were terrifying. The epidural would have been funny in its ineffectiveness if I hadn’t been in so much pain. It worked…for about 15 minutes. Then not. Oh look… EDS involves aytpical responses to medications. Huh. Funny, that. It’s not just being a redhead.

Going to physical therapy feels like whack-a-mole… we get everything aligned and something else pops out. Much of my time there is spent with the PT pushing my joints back into the socket properly. They’re not VERY far out of alignment… but enough to cause excruciating pain. And people wonder why I don’t want to move.

“Your cervix is very friable” says one doctor… it bleeds every time they do a pap smear. “It’s very sensitive” says another doctor… every touch causes contractions. I spent most of my periods as a teenager curled up in a miserable ball. “You have PID” says a nurse midwife doing a pelvic exam that causes me pain. No tests come back positive for anything, but I wouldn’t hurt if I wasn’t a “bad girl”. They give me antibiotics and birth control pills. The pills nearly kill me. They help the cramps, though.

“Your skin is so pretty,” gushes a drunk woman as I stand, age 17, waiting to float down the river for an event. I don’t know what to say. “It’s like velvet she says” and starts to reach towards me, the woman with her pulls her away. I am nonplussed. My “pretty” skin is also highly prone to rashes, scars a little funny, and I’ve had keratosis pilaris since I could remember. All those things are common in people with EDS.

“Your cervix was so fragile,” said the doctor, “That I couldn’t keep a clamp on it. Your uterus was falling apart as I took it out. I’ve never seen anything like it, and neither had my assistant.” Later, she says, “Oh, I see the problem. The stitch was tearing your skin.” I suspect that if she’d known the diagnosis at the time she would have stitched me very differently.

“Are you sure it’s not a psychological problem,” asks a well-meaning family friend who is chronically short on tact.  I stop spending time with him. I stop spending time with a lot of people.

“You should just go to bed earlier.” I wish. My body’s fucked up sleep cycle thinks that if I sleep before 1-2 am, I must be napping, and wakes me up after a couple hours. Interestingly if I lie down for a nap at 10 or 11 in the morning, it is easy to sleep for four to six hours. Sleeping hurts though… if I get enough sleep my body hurts more from lying in bed that long.  My goal is 2 am. But brain fog sets in and it is hard, hard to get up to bed sooner than 3 or 4. If allowed I can easily sleep for 8 solid hours if I start at about 3:30 am and am not disturbed. I have small children. Hah. “But if you just had more self-discipline….” And then I read “sleep disturbances are common in EDS.”

I spend my energy constantly in holding myself together. If I get distracted, I get hurt. If I am happy, I get hurt. If I exercise and am not scrupulously careful not to overdo it, I am toast for days.

The human body is 80% collagen. And mine? My collagen is all a little bit wrong. Welcome to the grand unifying theory of what the hell is wrong with me.

Riding the respite roller coaster

So I’ve been drowning a lot. And a local disability advocacy worker threw me a lifeline by suggesting Shiny be enrolled in a camp that does inclusion for special needs kids. I looked into it, they offered to do a scholarship for the first week, it looked like such a good idea that I paid out of pocket for a second week.

Shiny was excited. Great. It involved swimming and dancing and a lot of free play.

First day was fine, exhausting for me because I ended up doing a meat sort, but that was okay, I had 10 days of respite lined up, 9 hours a day.

The second day was wonderful up to a point… I ended up taking a long nap with Miles, getting things done. Hubby came home to a happy wife and a cooked meal and Shiny was tired but that’s okay.  The point at which it wasn’t wonderful was when her second week of camp (different camp) called and said Shiny would not be able to go because the camp was wide open and outdoors and there would be no way of keeping her safe in that environment. I was sad but wanted to enjoy the rest of the week.

Third day, I had an appointment in the morning that fractured our nap, the appointment was a dud anyway as we were going to have a plug installed near our fireplace and they couldn’t do it for under $800… But I was going to have a nap in the afternoon with Miles anyway and make a nice dinner… and then Camp called.

Shiny was refusing to wipe her own butt, and “their staff isn’t trained for that”. She was acting tired and didn’t want to participate, so I needed to come get her, she wouldn’t be allowed back.

That 10 days of respite.. had turned into 2 1/2. And was done.  Over.

I flipped my shit when I got off the phone. My mother went and got Shiny, and advocated for Shiny to return the next day for a shorter period of time. I called crisis services for the local county office of developmental disability services (DDS). There were a lot of phone calls and a lot of messages and I cried a lot.

Then I got a magical call back from the regional crisis intervention coordinator.

Shiny will qualify, possibly as soon as next week, for $1000 per month in respite funds.

In 3-6 months, because Shiny is currently “at risk” for losing her placement (i.e. if we can’t figure out lasting solutions that make it possible for us to care for her in the home without her damaging us, we will have to look at therapeutic foster care, I am THAT done), a new state program called the “K-plan” will kick in, and Shiny can be considered a family of one for purposes of applying for aid, such as SSI and Medicaid. Remember, we currently pay 1500 per month for insurance, which will drop almost by half January 1, but we have NEVER been able to have dental and vision coverage for Shiny, which has meant many thousands out of pocket.  We may also be able to get housekeeping help for the “extra” burdens that Shiny’s conditions create on the level of mess here. (Me taking time when I’m not keeping an eye on the living room often results in Shiny creating a poop disaster. Then I spend an hour or two cleaning up a poop disaster. So her effect on the house is twofold–without a break from her, nothing gets clean, ever, unless I do it after bed, and I don’t often have the energy to do it then because I’ve been dealing with her all day).

I got plenty of sleep and a break from Shiny over the weekend, two days in a row. By the end of the weekend, my co-host for the co-op saw me and was blown away by how much better I looked than the last 20 times she’d seen me. By Tuesday I looked in the mirror and said, “Oh, there you are!” to a person I hadn’t seen in years. I was starting to feel human. The level of devastation at having my two weeks turned into two days? I don’t have enough words to describe it.

But… with $1000 per month, Shiny can go to after-school care every day… at the special needs center where they presumably know how to wipe butts. No-school days will be covered. And there will be enough left over to allow some respite time on weekends as well, so hubby and I can actually spend some time together.

I am enraged at the shitty implementation of “inclusion” at the city program. But it got things going and helped grease the gears at DDS… normally there is a 3 month wait list, but they are expediting us. I could just about hear steam come out of the coordinator’s ears when I said that no one had referred us there, and I had learned of them by chance just this spring.

How very different her toddler years might have been.

Having just Miles around is a dream. He is so *easy*, and we get into a rhythm so nicely with each other.  I was so looking forward to having that…  And we will, it will just be a few weeks.

It’s like there’s still a rhinoceros sitting on my chest, but at least I know it will be leaving soon. And without us having to put Shiny into foster care.

It was something I hated contemplating, but I just didn’t know what else to do. She is abusive and violent and she will likely always be abusive and violent and my responsibility, and I don’t want my son to grow up bullied, and the fact that when she comes near I cringe and say “don’t hit me” is just sad. If she’s out of the house from the time she wakes up until dinnertime, we only have to deal with 2-3 hours per day and that I can do.  I can be the parent I want to be for her, if I”m not having to defend myself from her all the time. If I’m not pouring everything into just trying to minimize the amount of destruction she wreaks.

The morning of the day they sent her home, as I was getting her ready to go, she said, “Camping time. Oh boy. Can’t wait.”

I am still so angry with them.

Words

I can’t list them all, but here are some of the words and phrases Miles uses at almost 19 months:

Pees (please)
Gack-oo (thank you)
Sowwy (sorry)
Kissss
Ug (hug)
Mah! (mwah, when kissing)
Ow, Ouch
Hot
Cold
Wet
Water
Pee
Poo
Yucky
Dapoo (diaper)
Showah (Shower)
Bah (bath, sometimes an alternate pronounciation is used, see below)
Potty
Chayah (Chair)
Whee-chay (Wheelchair)
ah-SY! (outside)
Dock (dog)
Cah (Cat)
Bird
Bee-Bird (Big Bird)
Count
Buh-FY (butterfly)
Ahmo (Elmo)
Cooookie (Cookie)
Mahter (Monster)
Zoe (Monster and neighbor cat)
Tari (Atari, the neighbor dog)
Reh (Red)
Owah (Orange)
Lellow (Yellow)
Gree (green)
Bawoo (Blue)
Poopuh (Purple)
(he’s still parroting colors, but is starting to get the concept)
Fwoh (frog)
Hop
Burip! (ribbit)
Mouw (Mouse)
ee-Yow? (sound a dog makes…lol! Also cats, but he often says “Dog, Meow”)
Mama, Mom, Mommy
Daddy, Ah-oo, Dad, Dada
Sissy, Shiny, Niney,
Kay-yee
Grampa and Grampa (Uses same word for both my mom and dad…lol)
LURRRRRR (his cousin Laura, whose name is always yelled)
Cash (Cas, our former roommate)
Shut (shirt)
Pants
TSHOOO (Shoe)
Bock (block)
Duck
Ball
Toy
Book
More
Nap
Bet (Bed)
Yes
No
Mine
Me
You (and he’s starting to use these correctly about 70% of the time)
Dink (drink)
Eeee (eat)
ongy (Hungry)
TSHEEE (cheese)
Geeps (Grapes)
bawoobeyyey (blueberry)
Booger (Burger)
Sawsee! (Sausage, but also he uses the same for music?)
Eck(Egg)
anana (banana)
BUM! (plum)
Peas (and he means it–freeze dried peas)
Angy-burr
Bahnee
Shiny Tie (Signing time)
Run
Walk
Jump
Spin
Win! (wind)
Ky (Sky)
Go (and Go outside, go other places)
Stop
Barfoom (bathroom, lol!)
Uhstays (upstairs)
Gay (gate)
Nefick (necklace)
Boorsh (brush as in teeth)
Head
Eye
Ear
Foot
Piggies (Don’t think he knows they’re actually toes yet… oops)
bayeebunin (bellybutton)
Boop! (boob)
Noursh (nurse)
Neeepo (nipple)
Muck (Milk)
Peen (yep, that)
BALLS
Butt
Butt (Bus)
Butt (Butter)
Butt (Bath)

And today, I’m pretty sure he said, “Shih”.  And meant it… Shiny had just crapped everywhere.

So that’s more than 100 words off the top of my head. He does plenty of “Go ah-SY, go barfoom, Gack-oo MUSH (thank you very much)” and “all done/all gone/no mine” type phrases.

Every day he’s learning many  new words.

18 months, 8 years, 20 years…

Miles…. language abounds. I put Signing Time season 2 on Shiny’s iPad, and he is thrilled and picking up everything. “Win? Ky? Shining Tie! PIN!” (wind, sky, singing time, spin, the last usually accompanied by him turning himself in circles until he falls down.) The other night he woke in the night, a rarity, and cried… I came in and he said, “Duck. Duck. Meow.”

I blinked for a moment and then said, “Dark, not dog. (he’s constantly mixing up dogs and cats).” Then I pulled back the curtain to allow a little moonlight in, and he agreed, “Dock. Boop.”

I went downstairs after obliging him by nursing him, and he was quiet for a bit, then I heard crying and, “Dapoo? Dapoo?” so I went back up to change him. Found that he wasn’t poopy but had gotten some crumbs in his diaper that were chaffing… changed, rinsed and voila… he went to sleep without bothering to nurse.

Shiny’s summer  vacation sucks rocks. Even the parts where she’s in school are exhausting. Last week, by Friday I was 15 hours short of sleep over the course of 5 days. I got enough sleep over the weekend but it barely made a dent. So, so rough. She was being gone for 5 hours a day but I had to ask them to cut it back because the morning commute was a whopping 88 minutes long. Insane for a young-for-her-age 8 year old to be on the bus that long. She was starting to have accidents, plus they weren’t feeding her often enough at school. I was the squeaky wheel, got her day shortened and food opportunities increased and voila, she stopped pissing on things and started enjoying school. But it means that she’s not gone long enough for a decent nap for Miles or me, and there is no physical way for me to get enough sleep since I have to get her up at 7 and on the bus at 7:30. Going to bed before 1 am is futile for me–I will wake after 2-3 hours and be up for the rest of the night. So the week sucks the life out of me and I catch up on the weekend, which fails miserably when hubby goes out of town for the weekend. The last time he was gone for the weekend by the end of the second week with not enough sleep I was very near homicidal and suicidal at the same time. He will be gone for much of the weekend two weekends from now, and I am not looking forward to it.

Kailea is finally settled in a place that is pretty good for her, her job is working out pretty well, and she’s off to the south of England in a few weeks to visit her girlfriend for the first time. We do things like going to movies together. It’s nice.

I keep reminding myself that this summer is logistically the hardest things will ever be. It is challenging to get both kids out of the house at the same time because Miles runs and Shiny flops and they do it in different directions. Mornings to the bus go pretty smoothly but other than that it is a struggle, always.

Much time is spent fighting my own inertia. Or succumbing to it.  I strongly dislike spending the majority of my time as the only adult in the house. I miss K, I miss Cas. I miss having the freedom to run to the store or to physical therapy without dragging the kids along or waiting for the evening or weekend. The last time I took Shiny and Miles to Trader Joe’s Shiny pulled all the forks off the sample counter and I had to put all the groceries under the cart to keep her from screwing with them.

I feel demoralized a lot of the time. But the kids are both alive and without too many bruises, and they both have sufficient food and I clean their butts regularly. So not a total fail.

Shiny bit me about 5-6 weeks ago, on the chest. I still have “fang” marks there… it is healing really slowly. Every time I look at it I am reminded at how little control I really have of my life.

Ten Years

Crossposted from MDC

The milestone passed unnoticed, another day of nursing among many.

My son turned 18 months old a few days ago, on July 2. And that day marked 10 years of breastfeeding in my lifetime.

When my oldest was born (20 years ago as of a few weeks ago), I thought I’d nurse her for maybe 8 months, maybe a year. That stretched without effort to two, then I set some boundaries and we went on to 3, and she went on a trip for a week or two with her dad and came back wanting boob. At 4 I weaned her for 2 weeks and she urged me very eloquently to let her comfort nurse, and that went on for another 2 years. I’d ask her when she would wean, and she’d say “When I’m six.” Always, “When I’m six.” She was 5 years and 364 days old when she nursed her last, a few quick sucks and a pat on the breast and she was done. She’d come in putting blisters on my nipples and went out as gentle as could be.

Her sister, born over 8 years ago, came in like a lamb, lapping at the milk that spilled from my breasts but not sucking, and after 5 days of “easy” she was weighed and all hell broke loose and nursing became an arduous chore. I nursed more often at first, that kept her from losing but didn’t make her gain, so finger feeding and bottles followed every breastfeed, I would weigh, nurse, weigh, pump, feed until she’d had the minimum amount that would keep her gaining well enough to keep the doctor from pushing formula. She’d been gentle because she was born with no suck at all, due to a chromosome problem we didn’ t get fully diagnosed until she was 7 weeks old. Shortly after that, bottles started making her gag, so I went from the arduous pumping schedule to manually expressing milk into her mouth at every feed, and things got easier for a little while, though I could never sleep, never relax when she was at the breast. At 5 months she learned to suck, and I started to relax… but she stopped gaining weight. At 6 months old she started to chomp… oral defensiveness kicking in and teething, but with no rhyme or reason or way to predict… and at 8 months she got teeth and didn’t stop biting. There was no formula on the market she could tolerate, so I persevered. My eldest had been allergic to dairy so we held off on plain milk for a long time… and she kept biting. Every day just about, and sometimes multiple times per day, she bit me. Sometimes every feed. Finally, desperate, and fighting always the urge to push her away, fling her across the room whenever her jaw locked on my breast, I weaned her at age 2 1/2 years, just about exactly.

My youngest, my son, was born 18 months ago, and did okay but not great. My reflexes of massaging and hand expressing hid a problem… posterior tongue tie. I was sore, and it didn’t get better, kept getting worse, but he gained okay. I had PTSD type flashbacks when he’d clamp down, when it hurt, but giving up was not an option–I’d now had two children who could not have tolerated formula as infants, and I wasn’t about to find out if the third was following in their footsteps. At 2 months I asked for help… and found out he had a grade 3 tongue tie, his tongue locked tightly to the base of his mouth, couldnt’ even get a finger under it. We got it fixed and things got better…but never, ever perfect. I don’t know how long he’ll nurse, but he still nurses now, at 18 months old, and I don’t believe that weaning before age 2 is an acceptable option if I am capable of nursing him, so we’ll see how long after that we make it. He’s starting, finally, to learn better manners. He asks “please” rather than just shoving on my breast, sometimes. If he can learn to be more gentle, to be kind, I’ll let him nurse as long as we both want to.

I enjoyed nursing my first after that first horrible week with her. I can’t say I’ve enjoyed it much since. But I don’t do it for my own pleasure, and anyone who thinks I do has a screwed up notion of what pleasure is. I do it because it is the right thing to do for my babies, it is what they need. My soy and dairy-allergic eldest thrived on mother’s milk. My middle child who cannot have added citrates and who needed every single extra stem cell and IQ point I could give her is doing better than they ever let us hope. Breastmilk may well have saved her life–there are not many children with her syndrome and a significant percentage of those died very young.

My little boy, though… he loves his “boop!” and even when he’s driving me crazy and making me feel touched out and panicky…. I still manage to find moments where it is comfortable enough, where I can watch his eyes flutter closed as he drinks his “mook”.

People always say that they are sad when their last baby grows out of a phase or hits a new stage of development. For the first time as a parent I’m not wondering when he’ll hit a stage or wishing he’d develop faster, but likewise I don’t regret that he’s moving past babyhood. When he is done nursing, I will be done with nursing as well, and a good long run of it.

Good Intentions Microwave Cake/muffin

Microwaves may be evil (see my last entry), but this cake is so nutritious it’s actually good for you. So you can call it a muffin. Even if it has chocolate chips.

This is FAST, flexible, allergy-friendly and really tasty.

Get a mug. The narrower it is the taller your cake will be. Don’t preheat anything.

First, pick your structure: Flax seed meal is a good base, you can use only that, or you can substitute part of the volume with almond meal (my fave) or ground hemp, or another seed or nut meal. My preference is half flax and half almond. Put 1/4 cup of this (total) in the mug.

Next, add cocoa if you want the cake to be chocolate. Muffin. Whatever. My favorite is from Frontier Herbs and is a dutch-process organic cocoa. It mixes really nicely and tastes fantastic. Trader Joes makes a good one too. How much cocoa you add is up to you, but it should probably not be more by volume than your nut meal. You can leave cocoa out entirely if you’re doing a fruit muffin.

You’ll need a couple hearty pinches of baking soda. Or, if you really want to bother getting out a measuring spoon, 1/2 teaspoon. I never bother.

Add cinnamon or other spices if you so desire. Don’t add too much. This is one tiny cake.

Mix the dry ingredients with a fork.

Into the dry ingredients you will need to add

1 egg. I don’t think egg replacer is going to do it on this one. Sorry. If you have access to duck eggs, one duck egg is perfect for this recipe if you’re using cocoa. But one chicken egg is fine. Or you can even use “one egg’s worth” of eggwhites. You need something that does what egg does in the microwave, which is basically cook as fast as it foams. This is essentially a microwave souffle. Much less tricky than the real thing.

2 tablespoons (at least) of liquid sweetener. This can be honey. Or maple. Or karo. Or even sugar free pancake syrup. But you need both the liquid and the sweet, You can use a tiny bit extra if you are using a lot of cocoa. I use honey if I have it and maple if I don’t.

Vanilla, if you want.

Other flavorings (orange zest? almond extract? the blood of the innocent?) as needed.

Raisins or blueberries or chocolate chips or…? Chocolate chips are a fave here. chocolate chips and raisins together make extra sweet not necessary.

Stir it all with a fork until it is a nice batter with no dry spots.

Stick the whole business in the gateway to hell microwave and microwave for about 90 seconds. If your first shot doesn’t cook all the way through, nuke it for an extra 15 seconds or so until it is firm and springy to the touch. If it seems overdone, do your next one for 60-75 seconds instead. I’ve got a reasonably powerful but not overpowered microwave and 90 seconds is perfect for us.

Pull the cake out. Run a knife around the cup. Turn it out on a plate and cut it into wee wedges if you want, or just grab a spoon and dig in. Particularly good with a smidgeon of ice cream or whipped cream or just a tall glass of milk, but works well all by itself.

This is very high fiber and filling. It is not low fat, but the fats in it are very healthy fats.

Still sick, slowly mending

but the internet is still funny. This little exchange between me and my cousin on Facebook still has me giggling. Backstory: Someone was talking very self righteously about how they don’t have a microwave because microwaves “change” food. So I did a quick google of “Microwave ovens are evil” and landed on this gem:

“Microwave ovens are evil, and that they cook food by opening a trans-dimensional gateway to Hell, and it is the heat from Hell that cooks the food.”

Which amused me so much I posted it to Facebook, where one of my brilliant cousins said, “2.4Ghz radio waves are microwaves. This the same band as wifi which is used to access the Internet. The Internet is full of sin and sinners. Hell is full of sins and sinners. The Internet is Hell. Wifi transmits Hell. 2.4ghz radiation is a gateway to Hell. Microwaves cook using a gateway to Hell. Yup, the logic is sound.”

 

This wouldn’t hurt so much if it didn’t hurt so much

Kailea moved out today. I’m so proud of her–she took the bull by the horns and got herself a decent first job and a place to live.

The part that hurts is that I’m super, duper painfully sick right now–sore throat, fever, chills, ear ache, did too much sick.

Cas is moving out on Tuesday morning, early.

To say that I am overwhelmed is an understatement. Both are making positive steps forward in their lives, figuring out how to be grownups, doing the things you do when you’re 19 and 20 and starting out in the world.

But oh my heart I will miss them. K is 15 minutes away in light traffic, half an hour in heavy. I will likely see her once or twice a week. Cas… I don’t know when we’ll see Cas again, off into the wilds she goes, first Nebraska and then Montana.

This means that starting Tuesday it is my job to get Shiny to school, watch Miles all day, pick Shiny up again, cook dinner with two kids and no buffer. Sounds like less than many of you guys deal with, but on top of that I’m sick, plus there’s also the background of fibro and hypermobility and pretty much always being in pain if I’m up and doing. I’ve been so lucky to have the time I’ve had with backup, but I’m going to be flying solo and that would be a lot less scary if I didn’t feel like ass.

Today I got an award lauding my organizational skills. I had to work hard not to laugh hysterically. I’m good at inspiring people. I’m good at systems. I’m lousy at maintenance and I wonder if they’ll still like me if it all comes crumbling down once I don’t have help.

Miles is also feverish and sick, limp and listless, we were at the park and he just stayed quiet on my back and spent some time nursing–he’s been a ball of energy for months, it was almost scary.

Tomorrow my husband celebrates his “birthday observed”… long story. But I will be primary with the kids. Mothers day they will let me sleep, thank god.

Allie is back at Hyperbole and a half. Every few months I worried about her, wondered how things were going. Sounds like I was right to worry, but I’m glad if she’s found her way out of the morass that depression is. I’m doing my best right now to fight it, but it feels like I”m fighting vampires with marshmallows.

If I wasn’t in such pain right now, I might be able to have a better attitude about things. But my skin burns, I feel every fiber of my clothing, my throat is full of knives and moving is hard.

I know I can do this, mostly because I won’t have any choice. If I come out the other side, it will be as a stronger, more capable human being. Which sounds like a good thing, but also too exhausting.

Little things… our hang tag expired, and I’m not getting a new one. Bye, easy parking. We’ll see how long I can go without–I could get another without trying very hard, but I”d like to see if i can manage without.

Our food budget is going to be cut almost in half. And this makes me so sad.

We have new people moving in. New people. Yay. But they’re not family. Maybe they’ll be family. Maybe they’ll just be tenants.

I hired a housecleaner. She is fast and competent and worth every penny.

I bought new bras. Only to discover that the primary reason the old ones fit was because they were stretched out. I can close them, they’ll have to do (same size and make as the old ones, super cheap price, but right now I feel every thread.)

 

Some Nights (Parenting Style)

TTTO: Some Nights, by FUN

For my hubby’s birthday, because he likes it when I filk.

Some nights you stay up way past your bedtime.
Some nights you sleep on the floor
Some nights you cuddle and you go to sleep so easy
Some nights we don’t sleep at all

But you still get up at 6 am
Oh lord, I did not know what I was in for
Oh no, no (what am I in for)
Oh no, no (what am I in for)
Most nights I don’t know, anymore

Oh woe oh woe oh woe no no
Oh woe oh woe oh woe no no

They call this the mommy wars? What are we fighting for?
Who wrote these stupid rules already
Don’t you start to believe the hype
It’s never even black or white
Try so hard to get it right
But it never works the same way twice

It’s all right (it’s all right)
Had the baby in my bed last night
Stopped my son from wondering where I am
where I am, where he is
oh where am I, mmm, mmm

Well some nights I wish that I had my own bed
Cause I could use some sleep for a change
But some nights I can’t to sleep without my kid
Some nights we get it right, I get it right

And we still wake up, I will see your face
And oh I know exactly what I stand for
Oh yeah, yeah (What do I stand for)
Oh yeah, yeah (What do I stand for)

This night, I do know, so come on

So this is it. I gave up my freedom for this?
Lost my shape and sagged for this?
Became my mom or dad for this?
(Yeah, come on.)

No, when I show you stars, you see, you see the stars, they’re not so far
When I sing songs, they sound like this one, so come on,
Oh come on, Oh come on, oh come on!

Well, the books, folks, every one, toss them all in the can
Decades of this, nobody will quite understand
Just do the best you can
Hold them close and let them go
Sorry if it’s not enough, they’ll figure it out themselves in a while

They said you were a mistake, that I was ruining my life
But when I looked first into your eyes
Girl, you will always be the most amazing thing that could come from
That terrible time… ah…

Oh, whoa, oh, whoa, oh, whoa, oh, oh,
Oh, whoa, oh, whoa, oh, whoa, oh, oh

The other night I walked the floor just you and me
held you close and we both agree

It’s for the best we didn’t listen
It’s for the best we didn’t distance oh

My leather jacket

When I was 19, I lived in a mediocre part of southeast Portland. I was attending classes downtown and taking the bus home at night. I was young, pretty, and had a number of scary moments when strange men would follow me off the bus. I always went to the store and called home for a roommate to come walk with me when that happened, but it got old really fast.

I did four things. I bought a nerve gas keychain (like Mace). I started wearing combat boots. I took Tai Kwon Do classes from the most chauvinist jerk on the planet. (“You ladies can do this move while holding a baby or putting on lipstick!”). And I spent way too much money on a real, honest to god leather motorcycle jacket. It was heavy. And felt like armor.

Changing what I was wearing and carrying was huge… suddenly the problems just went away. I felt protected, I felt badass, and I felt like if anyone gave me any shit I would have zero trouble defending myself.

I did not leave my house without my biker jacket all winter. Then it warmed up, and I walked out the front door wearing birkenstocks and a t-shirt and jeans, leaving the armor at home.

I went all of a block and a half to the store. In that time two separate cars slowed down and the young men inside harassed me. I thought about it while I shopped, and before I left the store, I mentally “put on” that leather jacket, the combat boots. I wasn’t actually wearing them, but I was wearing the attitude I had when I had worn them before.

No one bothered me on the way home. So every time I left the house, I put on my jacket, mentally, whether I actually put it on or no.

And never had another problem being harassed or followed.

I tell this story to the young women I know… the story that the actual fabric of what you wear, the cut of your clothes is less important than the attitude you put on.

Men can be pretty shitty about vulnerable looking girls. That doesn’t mean we are responsible for their shitty behavior. Wearing a dress or a t-shirt or even a bikini is not “asking” for anything. But predators are looking for prey. And putting on my armor kept me from scanning as “prey”. And made it a hell of a lot less scary to leave the house.

In a similar vein… when I was 9 years old, my parents were moving us across the country. My dad needed to drive the car from Michigan to Oregon, and put out a classified ad to find someone to drive with him. We went to meet someone who answered that ad, and as we walked up the front path, I remember seeing this huge German Shepherd dog being held by the collar by a tall, thin woman. I didn’t like the look of the dog, so I stepped back, afraid.

He broke loose from his owner, and lunged at me, bounding down the steps, across the front yard and leaping toward my face. My mother’s fist hit the dog, knocking him to the ground, at the same moment as his tooth laid open a cut on my face. Had she not hit him, I would have been maimed.

You might think that I would have been afraid of dogs after that… And I will say that I’m not wild about German Shepherds to this day. But the real lesson I learned was not to be afraid of dogs…but that showing my fear was the worst thing I could do. I’ve never failed to stand my ground with a dog since.

Sometimes self defense is as much about knowing that you have a right and the ability to defend yourself as it is about any external factor.

That same summer (lousy, lousy summer), I was picking plums in the alley behind our rental house, when a man came into the alley. He saw me and started unzipping his pants. I was alarmed (9 years old, remember?) and started to walk back to my house, which meant I had to pass him to get out of the alley. He reached out and grabbed my crotch as I passed, and I jerked away from him. He said, “What, can’t I touch you?”

I yelled, “No!” and ran for my apartment.

This was training at work. Stranger danger was a big thing, and this kind of attack was exactly what I’d been trained by Girl Scouts and my Mama Bear mother to deal with. I said no. I ran. I didn’t show my fear to the dog. I didn’t let my fear paralyze me (and fear can, in fact, literally paralyze people).

There is a knack to reacting to crisis situations. To thinking on your feet. To hiding your fear and doing what needs to be done. To putting on your metaphorical leather jacket and going out to kick ass and take names. Even if it’s just a role you play in your head… role play is training for the real thing.

7 years ago my middle child choked on a taco chip. I did what needed to be done until that chip was off her trachea and she was pinking up and no longer limp and blue in my arms. I fell apart later, when it was safe.

Fear is only useful if it motivates you to find a way to be strong and take care of business. If it paralyzes you, you have to learn another way of doing, another way of being.

Put on your leather jacket. You’ve got this.

Chicken for meal trains

So I’m taking part in a couple meal trains, and my default meal for such things is a roast chicken with potatoes and veggies.

My recipe for roast chicken is pretty simple…preheat oven to 450, rub spices and salt on bird, put in oven, clean potatoes, rub oil on potatoes, stick in oven above chicken, 60 minutes after the chicken went in everything should be perfect.  Add a salad and voila.

This is super flexible for easy meals. If someone lives close by, I can cook the birds myself and take them over the minute they come out of the oven–they will “rest” in the car on the way over and be perfectly timed to be carved when they get there.

If they live farther away, or need food dropped off well in advance of the meal, it is still simple. I rub the birds and clean the taters and oil them up and put everything in a foil roaster pan… The instructions for the family will be simply “Preheat to 450. Put pan in oven. Set timer for 60 minutes. Take chicken out and allow it to rest for 10 minutes before serving.”

This results in a bird with crisp skin, juicy white meat, crunchy wing tips (my fave) and tender leg and thigh meat. I use antibiotic free chicken from Trader Joe’s, at about $7-8 per bird, organic red potatoes, and whatever greens happen to be convenient. I might toss in some fruit if I’m long on it. Simple, allergy friendly, fast, and less work than going out to fast food.

The secret is the oven temperature… setting the oven even 25 degrees lower results in less crispy skin, longer cooking time, drier white meat.

Salt is VITAL to a crisp skin–it helps dry the skin out.

With cheap chicken like this, it’s not so vital to use every bit of it the way I would with an organic free range roaster, but we often throw the carcass in a pot, boil it, separate the meat, then add leftover veggies, potatoes and spices for a delicious chicken soup.

Released

Doctor says everything looks good and I should go back to normal activity but pay attention to my body and not overdo. Make up your mind.

Our cat is dead.

I mentioned in passing on Facebook how much I was liking our co-op veggies and Dan R. commented that he didnt’ think there was a functioning co-op in Eugene. My response: Oops.

There wasn’t. There is now. We’re now co-oping about 1/3 of our food, and will be increasing to about 2/3 once we get into the swing of things. If I manage to do what I want to do, we will get about 80% of our food from co-op within a couple months. The food is better. It is more local. It is less toxic.

One company said, “We haven’t had a local co-op ask for our products since the 1970’s.” Which is about when my parents were co-op-ing, and for similar reasons (more time than money, high food prices, a desire to eat better than retail would afford.)

If I manage to get a good price on fancy cheese, I will feel like I have won.

For an idea of the popularity of this creature I created… our first produce order ended up involving $1200+ of produce at wholesale prices, more than 20 boxes and something like 30+ people involved. I would not be surprised if we hit 30 boxes + 20 extra people who do non-boxed co-op produce (my produce orders tend to be $80-100 worth, the box only has $25 worth) this week.

We did a half steer last month. I would not be surprised if it was a whole steer this month.

The community it is building is priceless. If we need something to get across town, we know who might be going that way and get it there with the least extra gas. The efficiency of working this way is mind blowing.

And yet, it is a lot of work. I’m trying to structure everything so that I am not essential, that if I stopped doing any of it tomorrow it would carry on of its own momentum. There are far more buys going right now in our co-op than I am responsible for.

Because pink hearts mean he loves me.

His current favorite thing to carry around (carrying around=srs bzns for babies) is a broken heart clacker that Shiny got for Valentines Day. He clacked with it until the cheap plastic broke and now he just carries it around for the most part.

In a related development, he has discovered the concept of Hammering. And the related activity of Thwacking.

So now his FAVORITE thing to do is to climb up onto my arm and thwack me with a hot pink heart clacker that no longer clacks. I gently remove it from his hand, and toss it over across the room, and admonish “no hitting mama. Hit THAT.” (that=stuffed animal, other toy, chair, whatever, as long as it is not me and not his sisters).

2 minute later he hops down, toddles off, picks up the clacker, toddles around thwacking things with it for a while, and then climbs up and hits me with the heart clacker.

It’s like the cutest, most surreal and yet simultaneously annoying game of fetch ever.

Handling questionable play between children

In response to this post on The Leaky Boob’s wall: https://www.facebook.com/TheLeakyBoob/posts/484326791605293

(The situation: A mother finds out that a 12 year old relative has “breastfed” her 24 month old nursling in front of her 9 year old and told the 9 year old not to tell. When her family told her it was innocent and the child was curious, she disagreed and called CPS who told her it did not rise to the level of something they’d investigate due to the 12 year old being a minor.)

It’s not “no big deal”… but in this kind of situation, how YOU react will 100% color how it affects your child. 

The first thing you have to do when your child tells you anything of this nature (questionable physical contact that is not innately upsetting to the child but may be confusing) is take a deep breath, keep your “freak out” internal to yourself, and go into “up time”. Put your own reactions on the back burner–this is NOT about you. Ask questions. “So what happened? Are you okay? Do you have any questions? How do you feel? How did that make you feel?”

Listen. You absolutely CANNOT listen if you are utterly freaking out and calling the police. The police MIGHT in some circumstances be appropriate…but if you are “after the fact” by more than a few hours, or it involves someone known to you, this may be important, it may require action, but it is NOT an emergency. You have time to think and consider your options.

When the person initiating the contact is younger than about 13, you MUST remember that they themselves are still children, and kids have TERRIBLE judgment, and there’s a reason that consent ages are older. 

Now, once you have listened to your child, you need to take a step back and assess the situation. Were they hurt? Do they think it is a big deal? Are they upset? Is it just something silly? Do they understand the words they’re using, and are they meaning what you mean? (My daughter at age 4 told me she’d “had sex” with a friend. Some maternal freaking out on the inside and some gentle questioning later, it turns out they stood back to back and rubbed their clothed butts against each other.)

The question is going to start with “Was your child hurt?” Then you have to ask, “What prompted this behavior from the other child?” Then you need to talk to the parents, and POSSIBLY talk to the child, though that may be for the parents. 

If your child seems upset or hurt (physically or emotionally) and the actions of the other child are concerning for the safety of others, it MAY be appropriate to involve the authorities, but you really need to be careful. What is the goal? To punish the other child? That’s not the role of CPS. To find out where the behavior is coming from? That’s something that the police won’t generally do. 

In our situation, I talked to the other child’s mother. I suggested to her that if her child was playing “sex” (but clearly, and reassuringly did not actually know what sex was) she might want to talk to her kiddo gently and find out where she’d learned about sex and who was telling her about it. I had a long talk with my kiddo about appropriate touch, explained to her that that was not in fact sex (and she wasn’t curious enough to ask what sex actually was, so we tabled that part of the discussion unti she was, a few years later) and thanked her for being truthful with me. I did not punish her. We did not punish her friend but they stopped having unsupervised time together. Ever. 

My 1 year old will latch onto anything and anyone who holds still long enough, including his babysitter, who was distracted once by a phone call and got her shirt yanked and her boob latched faster than she could stop him. She started wearing button downs and we laughed it off. 

As for those who are “concerned” by a 2 year old latching onto a nipple without milk… the last 2 years of my older daughter’s nursing years, I had zero supply. None. She was nursing for comfort only, and I was taking medication that we didn’t know if it was safe for her, so she would actually stop if milk came out. And it’s still not “icky”. 

My reaction to finding out a 12 year old had “breastfed” my toddler would be to talk to the 12 year old about nursing etiquette, and find out if she had questions about breastfeeding. Nursing etiquette says you NEVER nurse someone else’s child without permission unless you get into a situation where it is life and death. Those are rare and unlikely to happen to a non-lactating 12 year old. Overreacting could scare the girl off nursing for life. I would also have a LONG talk with my kid about “If someone ever says don’t tell Mommy, that is a sure sign that you really really need to tell Mommy, and good for you for doing so.” 

I have 3 kids, one 19, one almost 8, and a one year old. I was actually molested as a child. My eldest had another situation which was far more questionable than the one with her friend, and far more upsetting, and the end result was that all the parents of young children in the family were alerted and my daughter never spent time with that adult ever again… but my reaction HAD to be based on the level of upset my child felt (some upset, mostly confusion, not damage) and not the level of violation I felt knowing my child had been touched inappropriately by someone I’d cared about. We took the necessary precautions to keep that person from being around small children unsupervised, ever, but did not make a legal case out of it because to do so WOULD have compounded the issue for my daughter. My reaction as a survivor was worse than hers as the actual victim… but I worked very, very hard to separate the two. 

To those who think there “must” have been a sexual component for the 12 year old… Not necessarily. Curiosity alone combined with the poor judgment that age often has, combined with a family culture of body shame would be sufficient to create the situation, without there necessarily being a background of abuse or a sexual subtext. The big issues for me are the secrecy and taking advantage of the teachable moments for each of the people involved.

Toddle.

I have a toddler. How the heck did this happen? He TODDLES. Like, he mostly doesn’t crawl anymore. And he says things. Not a lot of things, and not very well, but he’s able to sign yes and say no, can ask for boob or monkey noises, can say “diaper” and sign it… and he is loving imitating things, like using a fork, or my keyboard. TODDLING WHAT IS THIS NONSENSE.

Oh, and he also climbs. And puts things inside other things. And on other things. And knows that if he can get people to let him pick up their shirts, they all have bellybuttons. Which are fun to stick fingers in.

Cas managed to teach Miles to make dolphin noises, like he needed any help.

A step forward

So something good… Was about to take a nap and the phone lit up (I had the ringer off) and it was my doctor’s office… after they TOTALLY blew me off yesterday (backup doctor), MY doctor said she wanted me in there and they had a cancellation at 11:40. No nap… (sob) but I got my cpap mask replaced before the doc visit, went shopping at target and got some cute clothes for my boy for the science fiction convention we’re going to this weekend (always be batman), and then to the doctor’s office… where… she removed FOUR stitches, refilled my pain meds, said my last urine culture was perfectly clear and that I could do 7 days of abx rather than 10 (since it was clear before we started) and that my tissues are healing beautifully.

She also said that my intuition seemed spot on about what was going on with my body, and that after seeing my cervix during the surgery, she’s not surprised it was so sensitive to every little thing.

I ♥ her. She *heard* me. She figured out what the problem was and FIXED it. She listened and did not dismiss what I was saying. It was just good on so many levels.

I did eventually get a nap later.

And I’m a little sore from getting the stitches removed but it feels like normal “Oh, I just got stitches out” sore, not the deep feeling of WRONG that comes when those dang stitches pull.

Bored now.

The UTI is not gone. I did 1 week of macrodantin and 1 week of keflex and the fucker is still there. It is fine while I am actually on the antibiotics and the minute I stop my head swims and I get spacy and 12-20 hours later my pee starts burning.

Fuck this. SO DONE. It is of course a weekend and the gatekeepers will not let me talk to my doctor. Which pisses me off. SO FUCKING DONE.

2012 was too big to sum up in a single post

Or maybe at all. Huge year. Huge. Full of all sorts of completely life altering things.

In other news, going to the doctor=right call, I feel almost “fine” except for the part where I have to sleep 10-14 hours per day and can’t lift things. I’m off of everything but Piroxicam, and have minimal pain. But much tired. Wonder how much better I would have felt this past week if I’d figured the bladder infection out sooner.

Miles, like Shiny and Laura before him, took his first “run” between the arm of the couch and the gate. He’s done 1-2 steps before, this was closer to 4. He’s getting very stable at just standing without holding onto anything. I walked him in to show off to Daddy… at which point he was so excited about walking that he started bouncing up and down and couldn’t stay on his feet. Goofnut.

We saw The Hobbit. Someone could tell me all the stuff I didn’t recognize was from the Silmarillion and I’d have to believe them because I totally fell asleep reading the Silmarillion before Brooke even wrote a song about it, when I had insomnia even. It was ridiculously dull. I’m just going to tell myself they pulled out the interesting bits and glued them into the Hobbit for funsies. And if anyone bitches at me about spoiling the movie, it’s a book that has been out way longer than I’ve been alive, if you haven’t read it already it’s not my fault.

The movie was worth seeing. It was not worth seeing in Imax, and it was not worth how sore my butt was afterwards. Probably worth seeing on the big screen, but oy, 3 movies, really? They really should have made six out of the LotR, it is sort of bizarre to get 3 out of The Hobbit.

Note to self:

If I ever get my uterus out again, take cranberry after. I feel like an idiot, I have a UTI. After the evol catheter from hell during my epidural I totally took cranberry and despite being totally incontinent for a week (wasn’t that fun… not) I had no long term bladder issues. This time, catheter from hell again (how is it that people cannot feel those things in place? Seriously, if I write out a living will at some point it is going to have instructions that catheters never be left in place ever ever ever ever I do not consent ever again) and I did not do cranberry and lo, for I am inflamed.

So after a pee test yesterday they were all “La di da we found the problem you have a UTI no need to be seen.”

I was all, “LIKE FUCKING HELL YOU WILL SEE ME NOW BECAUSE I HURT DAMMIT LIKE SOMETHING IS WRONG AND I AM NOT GOING ANOTHER WEEK WITHOUT BEING SEEN.” Only nicer. And spacier.

At which point I had the single most immediately successful doctor visit ever.

All doctor visits should go like this. “Let me see. Oh! Is this what hurts? Let me fix that. There. Done.”

I had a stitch that was pulling, literally tearing the skin a little. She took the stitch out and my life is so much better instantly. I had no idea how much of my attention for the past 10 days has been focused on not moving wrong, on not wiping wrong, on coping with the niggling ow that was this one, tiny, poky focal point of ouch. Nothing else was more than an ache, not even the heavy burn of the UTI came close in sheer nuisance factor to that one stitch. I had been worried that I had an infection not just in the bladder but in the incision. No. Everything looks “great”.

And she fixed it, right then and there, done. Now I feel like I could actually sit through a movie, if I didn’t, you know, have to get up and pee every hour or two.

So by dint of locking the barn door after the horse has escaped, I am drinking cranberry thises and thatses (and jesus christ straight cranberry juice is sour) and taking macrodantin and that pyrowhatsis that turns pee a brilliant sunset orange and hopefully I will be feeling better and less spacey soon. I can go completely without pain meds for hours on end. If I couldn’t  take them at all, I would still be okay. But I have been instructed to stay on top of things, and so I do.  It is remotely possible I will, for once, actually finish a prescription of oxycodone. Except that I keep playing Zeno’s paradox with the tablets and at some point will go down to a half, then a quarter, then a crumb and done, and will never actually finish the last crumb. Or so is my experience with other bottles of oxycodone. I still have 90% of my last prescription, from a year ago, and won’t likely touch that.

Spellcheck wants to replace oxycodone with oxycontin. Which would be a bad idea, really, because I’m told one should never cut those in half. Zeno would end up stoned off his ass, and really never would get there.