Sexual Harassment: Now You See It. Why didn’t you before?

A black and white image of empty theater seats, curving at an angle away from the viewer

sexual harassment accusations are emptying a lot of seats

Red Flags and Shock Fatigue

Sexual harassment is bringing down a lot of people’s heroes. Not so many of mine.

The only Woody Allen movie I’ve ever managed to sit all the way through was Antz.

I feel about him the way I do about tempeh. Other people have ordered tempeh and told me, “Oh, this is the best tempeh I’ve ever had!” and I’ve tried a bite, and honestly? Tempeh tastes like rot to me, and not in a good way.

I tried to watch Annie Hall, and not very far in, something in my stomach churned, and I turned it off and watched something else. I don’t even remember at what point that happened in the movie, or what triggered it.

Sometimes very good storytellers have a skewed view of the world, and those of us who see the skew recoil from the stories. Not every well-told story is good. When the allegations against him came out, something in me breathed a sigh—not of relief, just a momentary, “Of course”— as I finally got an explanation for an instinctive recoil.

We’ve known about him for years. He keeps making movies. I keep not watching them. Will the known abusers now face consequences?

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Drinking Games as Coping Measures

So, drinking games are a super bad idea in reality, if done with alcohol, and probably literally no one should ever actually do that, because it can be actually dangerous.

THAT SAID… the concept of sussing out the tropes in advance and mentally taking a swig whenever a doozy comes up?

Is incredibly useful as a mental health technique, especially around issues of trauma and health, such as after a miscarriage, after a diagnosis, divorce, etc.

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no more shots

On to a new oral drug. lefluf something, IDK, i’m not allergic to it and it’s making me a little tired but not poisoned. And many more steroids.

I’m not going on LJ anymore. Everything’s on Dreamwidth (jenrose) and here, and I’m on Tumblr.

 

Just a little poison

Sometimes it’s really hard to write about other people’s happy times when it reminds me of when I was strong and thought I could do almost anything.

Sometimes it’s an escape, but sometimes it’s just a really rough reminder of how hard I’m struggling right now.

The true answer to “How are you” behind the cut. It ain’t pretty.

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What helped with my depression?

CW: frank discussion of depression, with mentions of body dysphoria, mostly upbeat.

I was answering this question in a private message, and decided to flesh it out here in case it helps someone.

What helped with my depression, behind the cut.

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Understanding Gender: A Guide for Kids

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When a baby is born, the first thing everyone wants to know is, “Is it a boy or a girl?” Even during pregnancy, parents often have an ultrasound scan, to look at a baby’s body and find out whether their baby has “boy parts” or “girl parts” before the child is born.

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Bullying prevention

 

 

Schools are responsible for setting the tone of the school and keeping kids safe at school, but in order to do so they often require a sea change in how they handle reports of mistreatment, as well as how they train the kids.

  • We need to train kids through programs like peer mediation, which teaches kids how to handle problems in fair ways through talking.
  • We need schoolwide, consistent programs like “The Three Bees” (Be safe, be responsible, be respectful).
  • We need to actively ask kids to be heroes, rather than villains. In larger schools this might mean setting up buddy programs where kids who are afraid can ask for help and get several older kids who volunteer to walk with them in “high risk” settings (between classes, after school).
  • Adults need to adopt a “believe the victim” mentality. This doesn’t mean coming down like a hammer on every accused, this means LISTENING to every child. Even the bullies. Because in many cases, bullies ARE victims, struggling for control anywhere they can find it.
  • Toxic school cultures like “Don’t be a tattle tale” and “Boys will be boys” need to stop. Kids need to be actively trained to treat people well. I don’t care how “innocent” children are, toddlers and preschoolers can be mercenary little bastards and while some are tenderhearted and empathetic from the get go, a lot of them really need to be actively trained not to hurt people to get what they want.
  • Consent culture MUST be taught.
  • Bodily autonomy MUST be taught.
  • A child who bullies needs to be trained, not suspended. They need to be isolated from the child who is bullied.
  • Children need to be taught to understand boundaries and be allowed to set boundaries and have their boundaries respected. This starts with things like saying “stop tickling me” and having the tickling stop. And maybe the idea that tickling without asking isn’t funny.
  • We need to communicate everywhere that “We don’t treat people like that. We don’t allow people to be treated like that. We don’t let our friends treat people like that.”
  • We need to teach adults to listen, to mediate, to problem solve, to look for underlying issues rather than just bad behavior.
  • We need to stop punishing victims for coming forward.

The difference between life and death, between learning and depression, between functioning and suicidal ideation is not who people are, it’s how they are treated. That means that the people around them can be heroes, or they can be villains. There are no innocent bystanders.

This is true whether we are talking about trans people, LGBTQA people, disabled people, or just kids who ‘read’ to others as being different for whatever reason.Even when bullying doesn’t involve fists, it can kill. It can make people feel trapped in their situation. And the opposite of bullying is not “stricter discipline” but “more connection.”

Teach kids to be heroes.

Rule Number One

We need to talk. I know we’ve probably not met and we’ve never said word one to each other online because I filter the hell out of my Facebook and you probably don’t go to Tumblr because it’s incomprehensible and I usually don’t get into it on those comment threads. But you need to hear this.

So, I adore your kids, okay? They’re amazing. They are bright sparks in a hard world. They’re looking around at a society that is far stranger than the one I grew up in, and let me tell you, Oregon in the 80’s and 90’s was pretty dang strange. And they’re trying to figure out who they are and where they fit.

These are kids who have loving hearts, who genuinely want to make the world a better place, and find their place in it. They want to make things better for poor people and children, and they want to help keep people safe and they genuinely want to do the right thing just as soon as they can figure out exactly what that is.

I need you to stop breaking them.

In my world, rule number one is “Mama loves you.” Not, “Mama loves you if you go to college and marry a nice person of the opposite sex and dress like people expect you to and get a job that is socially approved with sufficient status.”  Not, “Mama loves you if you go to the right church and wait until marriage to have sex.”

Just, “Mama loves you.”

Here are things that don’t matter when it comes to rule number one:

  • The clothes someone wears
  • Who they love
  • What pronouns they use
  • What sex acts they do, and with who
  • What church they go to or don’t
  • Whether or not they are gainfully employed
  • Whether or not they go to college at all or finish in four years
  • Whether they identify as the gender they were assigned at birth due to inny or outy bits
  • Tattoos
  • Piercings
  • Hair color
  • Who their friends are
  • Who they vote for
  • Mistakes they make and trouble they get into

Now, I get having hopes and dreams for your child. I’ve got three children and I’ve poured my life into them for 23 years. I get having expectations and wanting to provide them with a solid start in this difficult world. But there’s a right way to do that and a wrong way. It’s one thing to help your kids understand your values. But if the value at the top of the list isn’t “Mama loves you” (or parental/quasiparental tag of choice), I’m sorry, the moment your child realizes that they can’t meet your ideal for them, there’s an awfully good chance they’re either going to break, or you’re going to lose them, or both.

You need to understand that you cannot stop a child from being gay, or trans, or bi, or nonbinary. It’s not about “how you raised them”, it just is. And the more you make them feel “wrong”, the less they’re going to care about doing right. The less you love them, the less they will feel lovable, and the more likely they’re going to go looking for that love in harmful places. You can’t make them gay, but you can make them broken.

I am losing count of the number of teenagers I have had in my house or in my inbox or chat talking about how they can’t tell their parents who they are because they are afraid. Kids who did tell you who they are, and you kicked them out, because “not under your roof.” Kids who struggle for years to get back to a healthy place where they place enough value on their own bodies and souls that they don’t go out doing the exact risky and scary stuff you’re afraid of because it doesn’t matter, they aren’t worth it, you told them so.

I spend a lot of time telling them how worth it they are. And they are. These are beautiful souls who, given a chance, will pour their whole selves into helping someone, into making a difference. They have so much to offer, but you make it all harder by teaching them that they don’t.

I love your kids, but it hurts me when they hurt, and I need you to stop breaking them. Stop worrying so much about their immortal souls and worry a lot more about their hearts. Stop worrying about what the neighbors will think, and start worrying about whether your child will survive.

So… stop asking your kids when they’re going to give you grandchildren. Maybe they will, maybe they won’t. Stop asking them when they’re going to get married, because the last thing you want for them is for them to end up with a bad marriage for the sake of being married. Stop judging the work they’re doing, and the friends they have.

You can tell them it’s okay to stand up for themselves. And accept it if they stand up to you. Listen. Don’t get defensive.

You can tell them it’s okay for them to expect people to treat them well. And then you better treat them well.

You can tell them it’s important to try hard and do their best. But don’t tell them they have to be the best. Don’t make your love contingent on victory conditions. Some of the best people in this world never won anything.

You can say that you worry about risky behavior because you love them and you want them safe, but don’t you dare kick them out and make them even more unsafe.

Teach them that you value them, not that they are worthless.

You can even teach them about your religious beliefs, but don’t you dare put them in hell on earth just because someone told you they might go to hell someday. I’m fairly certain if Jesus exists, he judges people more harshly for cruelty to their children than he does for who they sleep with or whether they have tattoos, that was pretty clear in the bible I read. Jesus was all about embracing people society couldn’t stand. Try being more like that.

I love your kids. They’ve slept on my couch and they’ve lived in my house and they are always welcome here. But it would be a better world if they didn’t end up broken to begin with.

Rule number one. Please. I’m begging you. Make sure they know it. Tell them it doesn’t matter. Tell them you want to understand but you don’t need to understand in order to keep loving them. Tell them they deserve love, and happiness, and joy and all good things, and that you know that their path in life may not look like your path but you want to be a safe space for them to come home to. That you don’t have to agree about politics or religion or social issues or any of those things, that they’re still worthy of all that life can give them.

And if that little person you thought was a boy comes to you and says that she’s a girl, your response there is a life-and-death issue. Their future happiness and ability to survive adulthood depends on what you say to them. And if it’s anything other than, “I love you, let’s figure this out and find out what you need to make you happy,” you’re playing with fire, because the biggest difference in whether or not a trans kid survives (yes literally survives) their teen years and young adulthood is whether they get support and acceptance or not. Your attitude can literally kill them.

Rule number one.  Mama loves you.

Because while I will always keep my home open for them, I’d rather they not need me. I’d rather not have to build them back up and explain to them how you forgot the important thing.

Rule number one.

Shiny’s current meds, logic, and dosing

Because this comes up all the time.

CoQ10:

91yOlO9D66L._SY679_   vitaline coq10 bottles and wafers

 

 

So both of these brands use Vitaline CoQ10, which works VERY well. The claim is that this form crosses the blood-brain barrier better, and I’d have to say that the results are definitely more noticeable than TruNature, which we used before (and did have good effects and raised her blood levels very high, but which did not have as profound an effect on Shiny’s language.)

Natrol was terrible, and I think their supplier was fraudulent. Be careful. Other people have used Qunol to good effect, but Shiny can’t tolerate the citric acid.  I found the best price normally at Vitacost for the SmartQ10, but Naturedoc has by FAR the best price on Vitaline 400 mg (by $57 per bottle!). The difference between Vitacost and Amazon on SmartQ10 is very small, so get that one where it is convenient.

Shiny’s CoQ10 dosing is approximately half her weight in pounds, with a zero tacked on, in milligrams. Rounded up always. She’s currently 70 pounds, give or take, and taking 400 mg because it is easier to give her 400 mg in one tablet than 3 1/2 giant chewables. We see no ill effects from a slightly higher dose, but we notice very quickly if her dose is too low.

Kids with 4q deletions are often missing one of two genes which help the body make its own CoQ10. This may or may not cause a frank deficiency in the blood, but it seems to impact muscles, nerves and brain tissue disproportionately. This directly helps correct any deficiency, and increases the amount available as an antioxidant, which can be beneficial even for kids who are not missing one of the genes.

R-lipoic Acid

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So, many people have heard of Alpha Lipoic acid, which is a racemic compound of both the S and R isomers of lipoic acid. The R one is the one the body uses. The S one is at best useless and at worse actually gets in the way of the body using R-lipoic acid. A typical dose of ALA might be 600-1200 mg.

For kids with CoQ10 issues, R-lipoic acid helps the body use CoQ10 more efficiently to make energy, which is EXACTLY what Shiny needed. It also protects cells from damage and helps the body recycle antioxidants. Win win win win.

But straight up R-lipoic acid is VERY eager to bond with other molecules. And it is a narcissist. It LOVES itself. In liquids, R-lipoic acid may readily gloop onto itself into long polymer strands, which the body can’t use very well.  So we got some results giving Shiny 300 mg ground up in milk, but they took a couple days to see.

R-lipoic acid can be stabilized with a salt that makes it more water soluble and less likely to “gloop”. K-rala  stands for potassium (K)-R-alpha lipoic acid. The first brand we bought worked pretty well at doses of 100 mg, but we started increasing those doses and the company was bought out by Vitacost, and the quality went downhill… probably due to a fraudulent supplier, but the stuff stopped doing ANYTHING. I did some reading and decided to try the Geronova brand shown above. We gave Shiny 6 drops (20 drops is 100 mg, so this was less than 40 mg, after she’d been on 300) because the company said it was often much more effective at much lower doses due to the ready bioavailability.

They were not kidding. 5 minutes later, she started chattering. It wasn’t super coherent, but she was MAKING NOISE ON PURPOSE and it had been a long, quiet summer, punctuated mostly by her tears of frustration. And she was CHATTERING. Talking constantly. For an hour. Like every word she’d tried to say burbled up at once.

She’s now taking 12 drops per day, at about 70 pounds, and we’ve gone from talking about getting her to cooperate with sitting in a chair at school to talking about them teaching her actual subjects. (She’s in a life skills classroom, but is incredibly interested in science and the natural world.) Use this brand. Don’t bother with anything else ever. Not ALA, not RLA, use the Geronova K-rala if you need anything having to do with Alpha Lipoic Acid.

Everything else she takes is at dinnertime. GIVE THIS IN THE MORNING. Trust me.

 

Melatonin

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So this we buy at Trader Joe’s because it’s $3.99 per bottle there, but even at twice the price it’s a good deal. Most people who need melatonin can get by with 1/2 tablet, which means 200 doses. That’s 6 months for $4, even at twice that it’s a bargain. 1/4 tablet is enough to make me tired. Shiny takes a full tablet.

More is not better for melatonin. This stuff works, and works well, at some of the lowest doses available on the market. It’s chewable, and citrate free. I don’t advocate melatonin for most typically developing kids, but throw in a chromosome disorder, metabolic disorder, autism, what have you, and the stuff is a godsend.

Give only at night, within half an hour of bedtime.

Fish oil
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Shiny takes one of these every night. It really seems to help with behavior and frustration levels. The dose is not high, but the price is, but this works and she tolerates it, and that’s enough for me. It tastes terrible. We bribe with chocolate.

Methyl Folate, B-12 and B6, and biotin

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Methylated B-vitamins may be absorbed more readily, and we want things to be as absorbable as possible. This is a tiny lactose tablet that dissolves fast under the tongue. She tolerates it very well. B-vitamins can help the R-lipoic acid and CoQ10 work better.  When we added this and other B-vitamins, Shiny’s energy levels picked up even more than with the other supplements. We’re currently giving Methyl B-12, Methylfolate, P-5-P (B6 in a more absorbable form) and Biotin (separate tablet). The doses are probably higher than she needs, but I don’t worry too much about it as she can pee the rest out.  We special order the combo from our local health food store, it’s hard to find online but worth it (cheaper than giving them separately, and less trouble.) The biotin can be had on amazon.

This is another B-vitamin we give. She tolerates it well. If we were more organized we’d probably give the b-vitamins in the morning.

ADDENDUM 6/22/17
We have dropped all the B-vitamins above in favor of mixing half of a B-right capsule with the other powders with a little food. This is cheaper, and gives a broader variety of B-vitamins, and they’re an ideal form.

B-right b-supplement

Vitamin D, because Oregon

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This has zero taste and she tolerates a drop on food. The drops come out slow but zero taste and tolerates well makes me not care. One bottle is a year’s supply for one kid. Everyone in Oregon gets D deficient if they don’t supplement, so this would be on the list even if she didn’t have a deletion.

 

Sunflower lecithin

So this is a good source of choline, which is helpful neurologically. I take it myself, she has a liquid form, not a capsule. It helps a LOT with her mood. Super low risk. This is better than soy lecithin which can be irritating for some.

Magnesium works with the other vitamins and supplements to help the cells work better. We avoid citric acid, so this powder format has been handy. This lasts a very long time, we use a tiny ‘stevia scoop’ for it.  Pretty much magnesium is magnesium. Find a form your kid can tolerate. It’s rarely fraudulent (because it’s cheap and what companies use to cut other meds with, lol!) Bedtime is best for magnesium. Mag can help with asthma and lung reactivity.

Vitamin C:
Pure ascorbic acid does not contain citric acid and seems to be well-tolerated. Buy the smallest jar you can, it only takes a tiny pinch added to foods to boost C-intake dramatically. Can cause diarrhea if you give too much. We bought a large jar and Miles got into it and mixed it with ketchup and most of it was lost and it still took us months to get through the rest. I’m serious that a little goes a long way. 4 ounces is probably a year or two’s worth, watch the fresh date.

Parents as researchers

In response to this article because I get Shiny’s story out when I can in hopes that it will give other parents the oomph to look past what they’re told:  https://www.propublica.org/article/muscular-dystrophy-patient-olympic-medalist-same-genetic-mutation

I am the mother of a child with a rare chromosome deletion. Watching her as a baby, I would see her energy run out like a dying flashlight battery, watch her “turn off” and stop playing, watch her go quiet and silent as she waited for her energy to pick back up enough to play again. Then she would, like a flashlight turned off and on again, have another burst of energy, play for 20 minutes, then stop.

I said, “Something is up with this child’s mitochondria.”

She had, at that point, demonstrated a consistent reaction to too much citrate or citric acid in her diet, or when I was breastfeeding, mine. I took to googling now and then phrases connected to her condition. Citric acid. 4q21. That led me to learning about the Kreb cycle (also called the citric acid cycle), which helps the mitochondria do what they do to help the body produce energy from the raw materials it takes in.

This lead me to a seemingly random article on Coenzyme Q10 deficiency. Reading the symptoms, all more severe than those of my tiny daughter, I started to get goosebumps. At that point I think I knew two or three other families whose children were affected by the same mutation in the same area, and I knew their children’s symptoms. Every symptom showed up in some degree in our girls. Where full CoQ10 deficiency would give full on seizures, our little girls might have absence spells where they weren’t quite fully seized but weren’t fully functional either. (We now call them brown-outs.)   Language issues were rife (one of the dominant features of 4q21 deletions at that time was a near universal lack of expressive language). Kidney issues showed up in some of our girls, not as severe as the article described. The lack of energy was pronounced. When I got to the part about the genetics, I said, “I know where that gene is…” and sure enough, it was at 4q21. A recessive mutation would produce a marked deficiency of CoQ10 because a precursor would not be made. Our girls’ symptoms seemed remarkably consistent with a “half strength” issue… our kids had one working gene, which seemed like it should be enough if the disorder was truly recessive, but clearly it was not, and clearly something was missing.

It was when I got to the section marked “Treatment” (there was a section on treatment!) I started shaking and had to wake my husband to tell him to stop me from robbing a health food store. Over the counter CoQ10 resulted in a near complete reversal of symptoms, within a month. I immediately sent a message to the researchers listed in the paper, and had an answer back by morning. “Little to no risk in trying CoQ10,” they said. “Here’s the dosage we use for people with two copies of the mutation.”

“Maybe she only needs half the dose?” I wrote back, “Given that she probably has one healthy gene?”

I received the electronic equivalent of a shrug back, and put her on the full dose that day while arranging for some testing. She was almost two. I knew that kids who didn’t get solid language skills before two often never did, and I felt an urgency because of that.

Three days later, she picked up a new word, for the first time in a year, she didn’t lose an existing word at the same time. (This, a child who had said “Mama” at 5 months old, consistently, for months, one of the only sounds she made, but who had lost that word for months when another word took its place.) New words followed in a tumble. Her articulation was terrible but clearly her brain was finally managing to produce language in a way it had not been.

She’s now on several supplements, all aimed at helping her body use CoQ10 better. Each addition of the right stuff improves an area that has languished. Some things don’t help, we don’t keep those. The true test is that sometimes we discontinue something, and if skills go with it, we know we’re on to something important.

When she grows, we have to increase the dose or her symptoms start creeping back. The dose that makes her symptoms disappear is almost exactly half the dose she would require if she had two mutated genes rather than one functional gene. Our best guess is that there are other genes in the area that work in concert, and that a simple mutation of one gene does not produce the disastrous effects that missing the whole segment does.

More importantly, other children with similar deletions have tried similar treatments and seen similar improvements. We’ll never have a large enough sample size for a gold standard study, but the risks are low for the supplements we use, and the rewards, thus far, for many families, have been life changing.

We have had many doctors pooh pooh the idea, including one who said, “Mitochondrial ailments are very rare. It would be extremely unlikely for her to have two extraordinarily rare conditions. Missing one gene rarely produces effects with things like this.”

I had to laugh. When a family has already been struck by lightening, telling them they’re not likely to be struck again, despite having found a tall metal object in the middle of the living area, isn’t very useful, especially when the burn marks all look exactly the same.

Interestingly, while my husband and I do not share my daughter’s deletion, his mother was diagnosed with Lewy Body Dementia. Which may have a gene at 4q21. I have no idea what that means for my husband, if anything, or why our family would be struck by such apparently different lightening in such an identical position.

I’m 43 years old and may well be going back to school soon in order to learn molecular genetics, because there is so much I need to learn to even read the papers that might answer my questions. To gain access to testing equipment I can’t persuade a doctor to use to satisfy curiosity. To contact experts who might take a student seriously when they brush off a parent.

In the mean time my child is now almost 11, and despite the fact we were told she would likely never have more than a few words… she has more than 1000 spoken and signed words that she can use, can read (taught herself to read silently, we discovered it by accident). She sings. She makes puns. She has a robust and precocious sense of sarcasm.  She is not “healed”. She is not “cured”. She is who she is, but with every supplement that we find that works, things get a little easier for her, a little less frustrating. We were told that 70% of children died before age 2 with her condition. Then they said 20% by age 5. That there might be a high risk of death before 20. Now? No one is making predictions anymore. We’re in uncharted territory.

The single best resource we’ve had? Each other. Other parents with children with similar deletions. Even some parents who also have deletions in similar areas. We share information. We talk about what works. We talk about who to talk to. We keep each other going when doctors dismiss us or simply don’t even bother to try to understand.

Why having the EDS diagnosis matters

Why does diagnosis matter?

When I was 4 years old, I got a flu that made it hurt to walk. And a couple months later it hurt to walk again and my mother told me I was making it up for the attention.

When I was 7 years old, I failed English because of instead of copying a sentence over and putting correction in the new sentence, I just put the punctuation in where it belonged on the typed sentence because writing hurt my hands. I flat out refused to do busywork because a) it was boring and unnecessary and b) it hurt.

When I was 8, my handwriting was still terrible, and handwriting hurt, so when we took a trip across country, camping, for a month, every day my mother made me practice my handwriting for half an hour or more a day. It kind of fixated my hatred of handwriting and the quality of it at about a third grade level. She was trying to help. If we’d known that the problem was underlying hand instability, maybe we could have done something to make it easier. Diagnosis matters. My son will never, ever have people accusing him of laziness

I could never run fast. I was always the slowest one. They’d tell me to run faster, and I’d twist my ankle and have to stop, and they’d say I did it to get out of running. I was labeled “lazy” and “clumsy”. I learned to fear running. This despite the fact that I loved climbing trees and swimming and was quite good at both of those things. If they’d wrapped my ankles and knees and had someone teach me how to run correctly, maybe my ankles would not have gotten so bad.

I took ballet from kindergarten through the sixth grade. My wobbly joints made it hard to do things steadily. And my mother wouldn’t let me go en pointe because i couldn’t hold my stomach flat. In retrospect, I got off easy, though I was angry about it at the time. I look at the damage dancers experience (and hypermobility is a selection criteria for top dancers) and I shudder.

We had yoga classes sometimes in school. I was “very good” at yoga. I will never do yoga again. In our family, “But have you tried yoga?” is a catchphrase we use to label assvice from clueless people about how to deal with chronic pain issues. I’m a goddamned pretzel, I don’t need more flexibility in my life.

My skin was extraordinarily sensitive from a very young age. I could not tolerate anything close to the front of my throat, it made me gag. I woudln’t let my mother zip up my coats all the way, starting from age 3, because they “glecked my neck”. Tags in clothes. Scratchy seams. Elastics. Lace. Pilly poly/cotton. Acrylic. I would have physical shuddering reactions to touching most of those things. Underwear HAD to have covered elastics. We learned to cut the edges from tags that had been melted to stop fraying. “I don’t like that, it’s itchy” probably drove Mom up the wall but she stopped trying to force me to wear things after a while. I was given a clothing budget and allowed to shop for my own clothes at a surprisingly young age because she was so over it. Don’t blame her a bit. Knowing how sensitive skin can be maddening, my kids lead a relatively cushy life in that respect.

Sudafed knocked me out and made me sleep. Scared my dad to death because I was sleeping so hard I didn’t answer the phone when he called to check on me one sick day. He came flying home from work to make sure I wasn’t dead. It’s not supposed to make people sleepy. On the other hand, drugs like Demerol and such that are supposed to make people forget about pain absolutely never worked. They would lie to me and tell me I wouldn’t remember and I totally would. I had an appendectomy at 14 and my mother had to push her way into the recovery room and snap at me to stop pulling off my dressings because I was so combative coming out from under general and had so much breakthrough pain that I was clawing the bandages off.

I never understood solarcaine, because it stopped working for me as soon as it dried. Dentists put unbelievable amounts of novocaine in and it would still wear off before they were done. They blamed it on my red hair, long after my hair went brown. They’re not wrong, but EDS also explains it. We won’t talk about how badly the epidural failed with my last baby.

After one sprain, I discovered that things felt better if I wrapped both ankles. Several people said I was attention seeking, so I stopped. I joined swim team so as never to have to deal with the track again. Still had to run during the presidential whatsis. And twisted my ankle.

In high school, it took so much effort to keep my hand stable enough to write that I could not take notes. I couldn’t listen, write and learn at the same time. Could not. People were pissed off that I would learn material without notes. I had to. Notes were too hard. I got docked in some classes for not taking them. I graduated with a 3.87. Probably would have been closer to a 3.92 if I’d been able to take notes. When I took a college class in my 30’s with a laptop, I was able to type the lecture verbatim while learning and listening. It’s hard to write if you have to fight your fingers bending backwards all the damned time. Essay tests were the actual worst. I started typing my papers on a computer before most people had access to home computers.

My handwriting is still awful. But now I use a special pen that doesn’t hurt so much, ask to type the responses to long forms, and flat out refuse to write long things and ask for someone to write for me if I can’t type out the responses.

I got pregnant when I was 20. The nausea and stretch marks were insane. My pelvic floor and belly would never be the same. My breasts headed south. People talked about “bouncing back” from having a baby”, I just found a new normal, one in which I had giant breasts and stretch marks over 90% of my body. I almost passed out a number of times… pregnancy makes you more stretchy, and while I don’t always have POTS, I surely did when I was pregnant. Ended up having unnecessary tests done because we were worried it was another embolism. Nope. Just my flaky body being flaky again.

I developed a series of food allergies. So did my kid. The list of things I’m allergic to is exhausting, and i often forget things until they’re in front of me.

At 23, the world wide web happened and a few years after that I met someone online with severe EDS. Some of it rang bells but I’d never knowingly dislocated things, so I shrugged it off because my skin wasn’t stretchy “enough” and my joints didn’t dislocate. I wasn’t as bad off as her so that couldn’t be it.

My hair started falling out in my mid twenties and I put on a lot of weight. It would take another 8 years to get a hashimotos diagnosis. People said “diet and exercise.” Every time I exercised, 2 weeks in I would get sick or twist my ankle. I tried yoga.

By the time I was 32, I did manage to get close to my pre-baby weight and kept it off until another pregnancy. And a miscarriage and another pregnancy after that happened and my thyroid failed and I put on 80 pounds in about 5 years. The pregnancy was particularly damaging to my pelvis as my child had craniosynostosis and macrocephaly and I pushed her out vaginally and destroyed my pelvic stability. I didn’t sleep for 2 months after she was born, struggling with feeding issues. She was 4 1/2-5 months old before walking didn’t hurt.

Parenting a special needs child and caretaking a mother in law with dementia crashed my adrenals when I went on thyroid meds. My thyroid was only diagnosed because it was one of the things they tested for when I said, “I keep falling” after it took six months to recover from a sprain only for me to fall again.

It was a very difficult time. I was diagnosed with IBS and fibro and sleep apnea and sleep timing disorder and had another pulmonary embolism (I have a clotting disorder as the cherry on top). I went from doing 14 hours a day of hard labor remodeling our house to barely able to function. And yet people sighed heavily when I said I needed help, because I must be exaggerating. Or because they’d been helping so much they were exhausted.

I was put into physical therapy to help me get back some function. That was helpful. I had another baby. That wasn’t. By that point, I figured out that pregnancy was destructive and I had my uterus out when he was 11 1/2 months old. While they did it, they repaired the cystocele and rectocele and open tear that was left from my first baby. The repairs failed within a year. I won’t have them redone.

Someone asked, “Have you considered your problem might be psychological?”

I didn’t speak to him again for a long time. We will never be as good friends as we used to be.

More falls, more pain, more PT, another embolism. I kept thinking, “How can it be possible for one person to have this many diagnoses?”

I began to wonder if maybe I was a hypochondriac. Then I started reading about EDS, and the lightbulb went off. And suddenly it all made sense, and I stopped feeling so crazy and started feeling really angry at the people who pushed me and bullied me and didn’t listen and made me feel like asking for help was a failure and that I didn’t deserve help.

I didn’t deserve to be treated that way. I would be less disabled now if I’d had more support then. I’d have done better in school from an earlier age. I probably wouldn’t have crashed and burned in college so hard. Maybe other things would have been harder or worse knowing, but not knowing did actually create problems. I don’t actually blame people for not knowing, they just didn’t know. They couldn’t know. But part of me wishes I could go back in time and say, “Knock it off. This is why.”

Here’s the thing. I get hurt when I push myself. I pushed myself hard for many years.   At heart, who I am, is someone who wants to help people. I want to fix things. I want to make things better. I want to learn. I want to do. I want to live.

I hate bedrest. I intensely dislike going to the doctor. It takes an enormous amount for me to go through the process of making an appointment, and going to the ER is literally the last thing I want to except for dying. So I don’t go unless I’m scared to death. I don’t scare easy.

I put up with things for YEARS rather than ask for help with them because I hate asking for help. I hate being needy. I hate not being the person who can make it better. I don’t like saying no.

When I can, I do. Sometimes I do even when I shouldn’t. And the price is high. One day of overdoing can cost me a week of function. One injury or illness can cost me months of muscle mass. If I seem wary, it’s because of experience, not timidity.

So what do I deserve? I deserve what we all deserve. We deserve doctors who listen and are curious enough to figure out underlying causes. We deserve to be treated with respect and have our conditions treated and pain relieved. We deserve a good quality of life. We deserve supports to make the most out of what we have.

We don’t deserve to be labeled “Drug seekers.”
We don’t deserve to be labeled “Hypochondriacs.”
We’re not lazy.
We’re not attention seeking.
We’re probably a hell of a lot more tired of the laundry list of diagnoses than anyone else in our lives.
And it is reasonable for us to want to understand our bodies and why they do the things they do.

A diagnosis, while stressful, can remove huge stressors, especially that internal voice that says, “Am I crazy? Am I making it up? Are they right about me?”

It can be the difference between finding the right help and being more damaged when we “try yoga.”

Just one drop: Breastmilk for healing

So it’s one thing to hear breastfeeding moms crow about how well breastmilk worked to clear up a baby’s red eye, but another to experience squirting oneself in the eye with fresh breastmilk.

First of all, it is painless. Soothing, even, if the eye is already irritated (and if it’s not, why bother?). Breastmilk is the exact balance an eye wants, and doesn’t create any sort of “foreign body” reaction. Mechanically, it washes the eye. But it also, fresh, contains leukocytes which directly fight infection. It contains sugars and nutrients which inflamed cells can use to help repair and function instantly. And it contains stem cells, which helps it repair damage directly. It blurs the vision for a few minutes, because it is not transparent, but it clears quickly, the inflammation settles down, and the pain goes.

But that’s just the beginning. When I burned my arm badly, I annointed the burn with breastmilk. The pain fled. Healing was rapid. Scarring minimal. I love hydrocolloids for burns but I’d rather apply breastmilk. My housemate gasped when a bad, fresh grease burn vanished in minutes with a few drops of milk on it. To the point where a year or two later, when a couple injuries happened at once, plus an old skin inflammation that had been failing to heal for months… I offered to find someone to donate a small amount of fresh milk, and the offer was accepted, strange as it sounded.

But it didn’t sound strange to my community of moms… my request was answered by five volunteers within half an hour. A few hours later we had a small jar of milk fresh in hand, and shortly after that healing had already begun, wounds that had been frustratingly difficult to heal for months had started to close. “More please?” was the request the next day. And another mom offered another half ounce. Not enough to deprive a baby, but such a tiny amount of precious liquid to heal a long hurt.

A couple years ago, I foolishly tried to clean an immersion blender and nearly chopped the tip of my finger off. It was cut to the bone, white, gaping. Direct pressure and breastmilk started helping quickly. By the time the EMTs arrived, it was holding together enough that I didn’t have to go in, by their judgement. The tip of my finger was dead white, and I annointed my finger with milk along the wound, visualized blood and lymph and nerves flowing, healing, functioning. I watched the tip of my finger pink up. They say that people with fibro have more nerve connections than they should, with more connections specifically to blood vessels and that the nerves do more than they’re supposed to. In any event, if I have poor blood flow in my skin, and someone points it out (a white splotch despite massage, for example), the moment they point it out it will pink up. It causes pain, it causes fibro, it causes reynauds… but it also might just have saved my fingertip. I kept applying milk. I kept visualizing. It kept pinking up whenever I thought about it. I thought about my finger for months (couldn’t help it, the nerves felt buzzy everywhere downstream from where they’d been cut.)

Two years later, and I’m still a little buzzy but blood flow and function are perfect. Barely a scar is visible. I wonder if it is because the wound was bathed in stem cells every time I thought to put a drop on it. There was a V-shaped flap. Even that healed. There was no infection.

On my birthday in 2014, I turned 42 and my son fell against a crate and split his lip. It was bad. And bleeding. And I nursed him immediately, and by the time he stopped, the bleeding had stopped, and the wound looked ten times better than when we’d started. He has a scar there, a small one, but milk and nursing saved him a trip to Urgent Care, and healed him fast.

My mother skeptically agreed to try it with one infection, and came asking for it the next time one struck.

The magic of breastmilk is transitory. Even refrigeration can inhibit the best parts of it.

But I think about how a drop of fresh milk could make a new burn vanish (milk was applied within minutes of the grease landing on the arm), and I think about how many gallons of fresh breastmilk a breastfed baby will consume… And yeah, I’m pretty sure formula will never do that.

People ask me why I don’t call formula a second choice, but a fourth choice. And it really comes down to the fact that fresh breast milk is a magic thing. And if it’s not possible, frozen or fridged from the baby’s mama is very good. If that can’t be had, donor milk is very beneficial and has helped many, many babies. (In my community, there are babies who have only ever had breastmilk despite their mothers having had mastectomies or severe blood loss that inhibited milk production). And if those things don’t work for a family, it’s a very good thing that formula is widely available, but it’s still the fourth choice. This is NOT a slam on formula feeding. This is not a criticism of people who can’t breastfeed or don’t feel comfortable taking donor milk. It’s a reality check. The “ideal” is not always possible in parenting, but we really ought to have a realistic knowledge of what the options are before we determine what the best fit is. It would be ideal for me to take my gregarious kid to social gatherings every day. With my chronic pain and fatigue issues, that’s not happening right now. But I’m not going to pretend that our routine is my “first choice”. My first preference would be to get up cheerfully in the morning, get Shiny off to school, go do something fun and educational with Miles with other children, come home, fix a nutritious lunch, do something productive and creative, and then make a fantastic dinner. But I haven’t gotten Shiny to the bus in four months because of an injury. Other people do it. Thank god they’re there to pick up the slack.

I don’t have milk anymore. When I had the embolism last year, I went on coumadin, and my levels jumped up and down on a daily basis because my special snowflake metabolism wouldn’t know consistent liver function from a sparkly unicorn. After shooting from 1.3 to 3.6 and ending up in the ER pissing blood for no good reason whatsoever, I asked to go on Xarelto… and put Miles on short shifts at the boob because the medicine does appear get into the milk, and being orally absorbed, may cause anticoagulation in a child. Not ideal in an active toddler. I dried up quickly. He still nurses now and then, despite saying he was done every day for six days, on the seventh, he lost his shit and begged for boob and I shrugged and let him nurse for 2 minutes and he was fine. Like magic. Even without milk.

So if I was being granular about it, I’d rank my own “preference/ideal” scale for infant feeding (<6 months) thusly:
Fresh mama’s milk at the breast
Fresh mama’s milk in a bottle or SNS (note that logistically this can be the single most draining approach to new baby parenting.)
Fridged mama’s milk
Frozen mama’s milk
Fresh donor milk (assuming a safe donor, which is an assumption that should not be made casually)
Fridged donor milk
Frozen donor milk
Pasteurized donor milk (personally, I react badly to cooked milk from cows. I can drink fresh raw milk or fridged raw milk or cooked-then-cultured milk without issues. It’s an enzyme thing. So feeding babies exclusively pasteurized milk, even human milk, isn’t high on my personal list of preferences, though it may have less risk of infection, it also does much less than fresh milk to help prevent infection and illness. But compared to formula, still gold.)
Cow-milk based formula (and here I’d rather have organic)
Cow-milk based whey hydrolysate formula (i.e. Good Start)
Cow-milk based full hydrolysate hypoallergenic formula (i.e. alimentum etc.)
Soy formula
Homemade formula
Goat milk
Cow milk

When people say, “every drop is precious”… yes. Even if a mom only produces an ounce a day for her baby to drink, and the rest comes from something else, think about the magic that even that ounce can do. One drop to heal a small burn. 1/2 ounce to heal a couple of injuries and start healing on several more.

There’s a reason why it was worth it to me, when Shiny was still new, to weigh her, nurse her, weigh her, pump until I got to our “goal” and then feed that pumped milk immediately by bottle. The more of my relative-to-her normal stem cells that colonized in her gut, the better off she would be. I wish I’d bathed her in breastmilk, head to toe, though certainly I leaked enough in the early days that essentially, I did.

Entertainingly, scientists managed to create a rat forelimb using a collagen scaffold and seeded cells recently. It is remotely possible that one day we will have disembodied mammary glands that produce a reasonable facsimile of some of the biodynamic parts of breastmilk for feeding babies who can’t nurse. Add formula to the thing, have it convert that into something more alive.
And it will probably still be a distant second, third, or fourth to a mother’s own milk, to fresh milk from a donor. Because we still don’t fully understand the complexity that is human breastmilk. It’s possible we never quite will. Sometimes it seems that the more we learn, the more we learn that there is still to learn. What we know now is just one drop in the bucket.