I feel like many doctors resist Ehlers Danlos Syndrome (EDS) diagnoses for their patients. On the surface, it baffles me why anyone would resist an obvious answer to a complex question. But EDS isn’t a sexy diagnosis, for a variety of reasions.
I feel like many doctors resist Ehlers Danlos Syndrome (EDS) diagnoses for their patients. On the surface, it baffles me why anyone would resist an obvious answer to a complex question. But EDS isn’t a sexy diagnosis, for a variety of reasions.
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.
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.”
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.)
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.
Not really. It’s not about vaccination. Or welfare. Or religion. Or politics. It’s not about circumcision or abortion or gay marriage or Fox news or Florida or gun activists or Black people or White people or people who see the world differently or people who learn differently or any of the things that anyone, anywhere says are “ruining everything” or “causing all the problems”.
This, this, my friends, is about manners.
Here’s the thing about almost every SINGLE thing people rant about on the internet. At the heart of it, somewhere, someone’s story is there. It may not be a “beautiful” story. It may not be a “correct” story, but it’s their story. It’s personal. And when things are personal, people get hurt by the collective volume.
People have reasons for doing what they do, believing what they believe, knowing what they know, whether it is “correct” or not.
We walk a fine line, calling out the problems we see, between “shedding light on injustice” and blinding people.
It is too, too easy to forget that being right at all costs may have a higher cost than intended. And that insisting on “being right” may well guarantee that you will never, ever, EVER actually be able to persuade anyone who you feel is “wrong” of anything.
Don’t use the “Oh, but not YOU,” argument. That’s just insulting, just like saying, “No offense, but…” If you have to make that excuse, you should probably stop a minute and reconsider.
My eldest child’s school, shortly before we started there, had an issue with a child being bullied for having gay parents. The school had a long community discussion about an appropriate way to say, “This is not okay.”
They thought about expanding the existing “No harassment based on race, religion or gender” to include “sexual orientation, disability” and a host of other things. Then someone very wise said, “Why are we doing it this way? How about we just say, “No harassment.” Because really, when, ever, is it okay to harass anyone?”
It eliminates the, “Well, but that doesn’t cover…. ” argument. Yes, I know we need to call attention to specific types of harassment because people just don’t think… but from a policy perspective, this takes the broad view, the, dare I say it, “constitutional” view, the “word it simply, broadly, and in a way that future understanding can expand the definition as needed.”
So when we started at this school, their policy just said, “No harassment.” Period. And I concur. Don’t treat people that way. Teach your kids not to treat people that way. That’s just good manners.
Now besides manners, this is also about effectiveness. About understanding. And about communication.
I grew up the daughter of a computer programmer and an attorney. To say that I was raised with the idea that logic and right and wrong are quantifiable and knowable is kind of an understatement. I spent most of my childhood and early adulthood wanting and needing to be right. The arguments I got into and my frustration at their illogic were epic. I was a lonely kid. And at the time, persuaded very few people.
The concept of active listening dropped into my life like a bombshell in my early 20’s. I remember arguing a point of maternal fetal medicine with a nurse during my doula training, and her stopping me and saying, “The fact that you are still arguing with me means you are not listening to me.”
This is what most people miss. If you are shouting, you aren’t hearing… but if you are shouting, probably no one else is really listening to you either.
I feel strongly about a lot of topics. But mostly it boils down to manners, and understanding that people are people, and that we are all in this together and we need to start acting like it. And that doesn’t mean all thinking or being or doing the same things, it means understanding that we never, ever will and finding ways to live with each other in peace anyway.
So the next time, and every time, you are about to post or repost or share or retweet or otherwise propagate something in this incredibly diverse and divisive digital world (that is, after all, in the real world and mostly generated by real actual human beings and is about real actual stories that happen to people)… please, stop a moment. Look at it. Maybe it makes you laugh, or snort, or nod your head.
But is it doing so by putting someone down? By reducing them from real, mistake-making, struggling human beings to caricatures and straw men? If you share it, will it hurt someone you care about? Or someone they care about? Or someone you’ve never met at all but who is struggling that much harder because people find their lives funny or enraging?
If so, then please ask, “Will sharing this actually improve a situation that needs improving, or convince someone who was wavering, or improve the world?”
Or will it just get the choir nodding in the background and further plug your ears to the realities behind the situation at hand? Will it plug the ears of the people whose minds you most dearly want to change?
Maybe you don’t care. I want to think you probably do. But if your goal is merely to be “right” or to look right or to appear smarter or to align yourself with the people you respect… please, stop. Think. Go here and read for a while, it’s useful. Look at your face to the world. Stop harassing people, and start listening.
We are a rich tapestry of stories and lives and perspectives and reasons and backgrounds. The world is made more complete by the variety and complexity of us. More interesting. In the long run, it is humanity’s variety that creates our ability to persevere. Value the fact that everyone doesn’t think like you, or me, or that guy over there. We would learn nothing if everyone understood the world in the exact same way. And we are, none of us, perfect.
I get the urge to yell. I’m a mom and live in a family and it’s made up of human beings and fur beings and we’re all of us fallible, even me. But yelling creates silence, or it creates more yelling, or it creates hurt. There’s not really much middle ground here. And it’s not very useful in the long run at fixing, well, anything.
Stop yelling. Please.
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.
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.)
When I was in my early 20’s, with my first child, my favorite carrier was a stretchy pouch I’d made out of interlock. It was fast, easy, I could wear it all the time and just pop my daughter in and out. When Shiny came along years later, I was disappointed to discover that the combination of her low muscle tone and my increased pain level, I couldn’t really deal with any one-shouldered carriers. Mei tais were my life saver with her. Late in my babywearing career with her, I was given a Calyx buckle pack, and it was the last carrier I was able to use before she got flat out too heavy to carry.
I was diagnosed with fibromyalgia as an afterthought of sorts in 2008. Shiny was 3, I’d had a pulmonary embolism that year, my thyroid was wonky and I was being weaned off the steroids I”d been on to deal with an adrenal crash the year before. I didn’t have the energy to carry her far, and bought the first stroller I owned with her.
When Miles was born, my fibro was in full swing. I gave birth in the middle of a fibro flare, and had them almost back-to-back for months after his birth. But because he was small and light, I could use a stretchy wrap with him. Heck, when a baby is under 15 pounds, you can get away with almost anything, carrier-wise.
16 pounds and up, however, and things got harder. Front carrying was out. I can do it for short periods, while sitting. It’s easier than not wearing when he’s asleep on my chest, if I’ve got him high enough. But for routine everyday stuff? Back carries it is. So I got out my Calyx and fixed a strap that had come unstitched, reinforced it in a couple of places and put him on.
To say the heavens opened up and choirs sang is only a little hyperbolic. Finding a carrier that works for your body type and needs, that makes a 20 pound baby “weightless” on your back, is a godsend. I can get nearly that level of comfort, but not quite, from some of my larger, grippier mei tais, if I get everything just right. But the Calyx, with shaped shoulder straps and perfect padding and ideal angles on everything, is a little bit of magic for me.
Yesterday I found out just how much it’s been allowing me to do. My morning routine is challenging. I think it would be challenging for most people, with my weight, chronic pain, a 45 pound special needs 7 year old and a baby, it is very, very difficult. I try to get up without waking the baby. I don’t always succeed, which means that he screams at me while I put on clothes (one activity that is impossible for me while babywearing… putting on a bra), screams at me while I get his sister up, follows me, screaming, while I take her potty and get her dressed, because babywearing or no there is no way I can lift her 45 pounds while wearing his 20 pounds, not for long, not without injuring myself. I get her pointed downstairs, change his diaper (he’s still yelling) and then he goes on my back in the Calyx, and blissful silence descends instantly. I get her lunch, get her shoes on, he’s quiet and content. I push her in her wheelchair (the only time we use it is to and from the bus because she’s too slow and falls down a lot if we try to walk her to the bus) and throw a fleece jacket over Miles and me, and we go to the bus, get her loaded, then come back to the house. It’s a routine.
Yesterday… Yesterday I forgot to take the Calyx upstairs. I grabbed a mei tai, put him on my back. At first it was okay. But it was a baby-sized mei tai, not one I normally wear for long, and by the time I got her lunch, my back was screaming. We were running late, so he stayed on my back in the mei tai to get to the bus. I was nearly in tears on the way home. My hips were screaming, my back spasming, my whole body hurt. Later in the day I had physical therapy and worked really hard.
I woke up this morning in so much pain… but putting him on in the Calyx… babywearing didn’t make it worse. I was in less pain walking back from the bus than I’d been when I got out of bed.
That’s the difference the right carrier can make.
But even with the best carrier I’ve ever owned… there are times when I simply cannot wear him. It breaks my heart, but there are times when I have to choose between holding him and making dinner, and we have to eat. But he is held much more than he would be otherwise, because I have the right carrier.
The Calyx is not being made anymore, which is sad. I find that of the carriers I’m using now, the Ergo Sport, the Kozy Carrier and the Tettitett are the most tolerable. I have a Kozy with extra long straps, and I wear it “Tibetan” style, and it is supportive and works for fairly long periods of time. The Tettitett is a toddler sized carrier, and works very well if I tie it perfectly. The Ergo Sport is a bit annoying to get on, but distributes the weight well.
The carrier I had so much pain with is not a bad carrier. It is actually very comfortable on the front and fine for shorter wearing on the back. It’s well made. Most moms would love it. But it’s not something I can get right the first time, every time, when I’m sleepy, rushed and in pain.
I wish I had the patience to really learn wrapping, but back wrapping has just never been very comfortable for me. I can do it but it’s not fast, and I have to put too much thought into it.
In the meantime, I have carriers that work for me. And my baby will figure out that me standing up without him is not the end of the world.