Category Archives: Health

Why having the EDS diagnosis matters

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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

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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.

Coughs

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Because I’ve typed this out for two or three people in the past 24 hours plus shared it with someone in person, here’s what you need to know about some of the big causes of coughs.

1. Pertussis: ANY cough which goes on for more than 3-4 weeks is suspicious for pertussis. Moreso if it involves sudden horrible bouts of coughing in someone who otherwise feels fine, especially a couple weeks after a “cold”.

What I wrote in 2004 when I had pertussis: http://www.dailykos.com/story/2004/12/13/79497/-Whooping-cough-the-quot-new-quot-epidemic-that-nagging-cough

(This was a year where they claimed there were 25,000 cases reported, but we suspect there were between 10 and 150 actual cases for every one that got officially recognized by the health departments/CDRC.)

2. Asthma: Chronic low grade coughs not really related to illness (sometimes illness comes because the lungs are already compromised, instead of the other way around), especially in young people, are often related to asthma. There are lots of medications for asthma, but for non-life-threatening asthma that hangs around making people cough, the place to start is magnesium. Read more about it here:

Magnesium for asthma: https://www.facebook.com/note.php?note_id=432901887077 is a brief, informal summary. The short of it? Try magnesium if you have asthma, it won’t hurt and might get you off of asthma meds if it works.

3. If you have figured out the underlying issue causing a cough (for example, virus, bacteria, asthma, whatever) you’ll want to find ways of easing it.

My lowest tech approach starts here, with cocoa, honey, and cherry juice. All of which have actual research and scientific rationale, plus they help. They really help. http://jenrose.com/cocoa-water-and-cherry-juice-for-coughs/

Antibiotics can help if a cough is caused by a bacteria AND the problem is bacteria actively producing things which irritate the lungs. They cannot help viruses and while they will shorten the contagious period for pertussis, see the above article for why they’re not a cure-all.

Reflux can cause a chronic cough–treatments vary, hubby takes the generic of prilosec.

Robitussin/Mucinex both are supposed to help thin the secretions. Spicy foods, hot liquids and merely drinking a lot of water can do as well for most people. Skip the drug and go for the hot foods (Thai soups are a family favorite) and chicken soup for a similar effect. Take the mucinex if you can’t deal with soup or spice.

Plain ol’ mentholyptus cough drops can be a big help short term. They also help nausea for some people. Essential oil preparations may help.

For children, a barking cough at night is often croup. First step is to take your phone and your child outside into the cool night air, and do your best to cheer them up. If that doesn’t help their breathing quickly, or they start getting pale or turning blue, call 911 immediately. For kids prone to croup, talk to your doctor about keeping a supply of steroids, a nebulizer and if necessary, oxygen and an oximeter on hand. When Shiny was at her worst with croup, we went from going to the ER every month or two, to almost no ER visits at all, because with the steroids on hand I could just treat her when the telltale symptoms appeared. It never got bad enough to use the oxygen at home. The difference between a croup cough and pertussis cough is that croup cough starts with the barky whoopy cough and they don’t get much of a break–it is a short illness, albeit terrifying. With pertussis, the cough gets worse over the course of weeks, and a kid may appear “fine” in between turning blue coughing. The fever tends to be higher with a viral croup as well. Croup hits like a ton of bricks and is done, pertussis sits around throwing bricks at you and mocking you for three solid months. With croup, keeping a child calm and happy and giving them cool air to breath is the fastest way to stop the immediate problem, but it often gets bad again when you go inside, so it is worth treating medically for most parents (vs. sitting in the cold all night.) Steroids work within hours to bring the breathing under control, and a single d0se may work for 3 days, by which time the body has usually fought off the underlying problem.  Epinephrine or albuterol will open the passages immediately, the two together take a bout of croup from potentially deadly to merely annoying within a very short time.

There are many, many causes of cough–I’m only covering the ones that seem to come up all the time for my circle of friends.

Rule of thumb is if the cough is productive and the chest is congested, work harder on thinning the secretions and reducing inflammation than on suppressing the cough. Suppressing the cough at night should be done cautiously, and with the least means possible. Cocoa is good because it does not eliminate the ability to cough, it just gives you more control, which means you can sleep longer.

If the cough is not productive, suppress all you want. Start with cocoa and cherry, consider basic cough drops, I generally skip dextromethorphan (the “DM” of Robitussin DM) but I do like Benzonatate, which has the side effect of actually relieving some of the chest pain. Opiates (codeine and others) can be effective but have a LOT of potential side effects (headache, constipation) that make them particularly not fun.

I can’t believe we’re getting on the roller coaster again

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So it’s been a while since we did a round of testing with Shiny. And the school is pushing for it, because they think she has vision and hearing deficits (duh) and want to qualify her for services on that basis. So I agreed to an audiology exam…. which was pretty useless, so they set us up for another one, which was marginally less useless, and now the audiologist is pushing hard to put Shiny under to do a sedated ABR to get better data.

I said no. What I really should have said is, “Over my dead body will you put this child under general just so you can get a slightly more accurate sense of how mild her hearing loss really is because you aren’t creative enough to get results with her awake. Fuck no, do not ask me again.”

And we went to the eye doctor and the sign language specialist wants Shiny seen at the Casey Eye Institute… which I agreed to right up until I learned it was part of OHSU. The staff was nice and pleasant and listened to me while I sobbed on the phone when they called (even seeing the caller ID was triggering) and talked about what they’d do in order to make it better… and then blithely mentioned the visit would last three hours. THREE HOURS. Three hours. Like they’re going to get anything at all useful after the first 20 minutes.

And it’s OHSU. They made noises about how they were separate from Doernbecher’s children’s hospital, which is where the worst stuff happened, but they are still solidly OHSU. I just don’t think I can. Like, I do not think I can physically make myself get into a car and go up there and walk in the building that I think shares a wall with the children’s hospital and not be losing my shit everywhere all the time. How can this possibly end well, no matter how good they are? And no one has told me how they could possibly improve things over what we’ve already done? Are they magically going to make her keep her glasses on? Wave a magic wand and give her better than 20/200 vision?

She is severely farsighted with astigmatism and she has had strabismus in the past but her eyes don’t seem to wander now. Honestly I think the right answer would be laser surgery but they won’t do it because of her age. And I think they’re wrong. I think if we wait until her vision is “stable” her brain will never adjust and a huge learning window will be lost.

If she’d wear glasses, it would be one thing, but the doc refuses to prescribe glasses that fully correct her vision, because of the distortion level, and I think that absent full correction she’s never going to want to bother.

Websites say, “Do whatever it takes to keep the glasses on”. We tried. It failed. Seriously we could put her in a straitjacket and she would just bang her head on the table until the glasses broke, she hates wearing them that much. I want to grab the doctors by the ear and drag them home and say, “You make it happen. I can’t.”

 

R-lipoic acid–FTW

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Oh my god. I may be saying that for a while.

So those who’ve been following our journey since Shiny was one know how significantly she has been impacted by supplements. And how badly she can be affected when a brand isn’t up to par.

Our R-lipoic acid must have changed suppliers at some point. I switched her from 300 mg of Vitacost’s brand to Geronova’s liquid K-rala… and she had about 5 drops, or 50 mg, in water, and a bit more in her milk. I was going for 100 mg because the liquid stuff tends to be super bioavailable (and expensive!)

And spent the morning…. chattering. And at dinner attempted and succeeded at a new word/phrase.

I’ve dropped EVERY vitacost “house brand” vitamin we have. Every single one, for every family member. Could be why I’ve been getting sicker? Eff you, Vitacost.

The difference was clear in hours. Hours. HOURS.

Jesus.

Feel-better Chai Pudding

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An experiment worth repeating….

In a jar:
1/4 cup chia seed
1/8 cup coconut sugar
1/8 cup cocoa powder
1/8 cup maple syrup
1 teaspoon “power tea” (Power Tea is a mixture of organic spices including: Ceylon Cinnamon, Cloves, Ginger, Turmeric, Black Pepper and Cayenne Pepper., very chai-ish, LOTS of anti-inflammatory action.)
1 tablespoon elderberry syrup
1 cup almond milk or coconut water or raw milk or coconut milk or whatever.  I used a blend of almond milk and coconut water.

I actually tripled this recipe though had to short the milk a tiny bit to fit in a quart jar.
Stir well and let sit in the fridge for a couple hours.

It makes a spicy chocolate pudding that unlike refined-sugar-based desserts, actually leaves one feeling better. I’ve been fighting off the flu for a couple days, and I feel almost 100% after a bowl of this.

The cocoa, spices and elderberry all have good evidence for being medicinal. Also very tasty.

No, really, do NOT fucking touch my children without permission

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Several people have said, “Oh, but touching his clothed foot wouldn’t likely spread flu”. Or “You shouldn’t have swatted that man’s hand away.” Or “You could have been more polite about it.”

One person even suggested that not letting people touch my children in public might create problems for my children in being touched as adults.

You know what? I was raised to know that my body was my own, and that if someone I didn’t know tried to touch me without permission, I was absolutely within my rights to yell, “No!” and leave.

That I didn’t have to be polite about it.

It was a good lesson to learn. Would have been even better if it had included that if people I did know tried to touch me without permission, I was STILL within my rights to yell, “No” and leave, but regardless, it served me very well with strangers.

I can name at least three times in my life where that lesson got me out of a situation that could easily have turned into severe molestation or rape, ONLY having been touched once in a way I didn’t like.

On one occasion, a man reached out and grabbed me–my crotch–when I was nine, and I pulled away and yelled no and then ran. He sounded so surprised I wouldn’t just let him. Makes me wonder how many girls did.

Another occasion, a friend’s makeout buddy reached out WHILE MAKING OUT WITH HER and grabbed my breast while I was trying to sleep. I yelled, “No!” and threw my clothes on and left.

On a third occasion a boy ran his hand up my leg because I had the audacity to wear nylons, and I told him to stop and when he got snippy I got the teacher. Who was an ass but that’s another story. I made it stop.

My child learns about loving, healthy touch and boundaries by being touched in appropriate ways by people who love him and by having his boundaries respected.

So yes, when people violate my son’s personal space and mine (the guy’s hands were inches from my chest, he had to put his hand between me and the cart to grab Miles’ foot, and he was not holding it gently, I had to use some pressure to push his hand away) I will respond reflexively by telling them “No” and pushing them away, and then leaving.

I will NEVER apologize for that reflex.

And that, my friends, is why you should not touch strangers’ children without permission.

Because doing so, you’re violating boundaries.

That, and because you really do not want to trigger a defensive reaction in someone who may be a survivor.

It doesn’t even have to be about the germs. Bodily autonomy is plenty reason enough.

He’s lucky I didn’t slug him.

Don’t touch my children in the grocery store

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It’s happened several times now, the latest was this afternoon. I was in Trader Joe’s, and a man came up and started commenting about the fact that Miles was in his jammies. I said, as I often do, “Wouldn’t it be great to be two and be able to get away with wearing footie jammies everywhere?”

He laughed, and then reached out and grabbed one of Miles’ feet. My hand came down and batted his hand away, and I snapped, “Do not touch my child.”

He looked shocked, and said, huffily, “Lots of people like me being around their children.”

“I don’t mind people talking to my children,” I said. “I don’t allow strangers to touch them in the grocery store.”

He then said to Miles, “When you’re 18 you’ll be on your own.”

It was only after I walked away from him that I realized that this exact same man has approached us before and tried to put his hands on Miles and I blocked him then, too. It’s the fourth or fifth time something like that has happened in Trader Joe’s. Close spaces? Friendly atmosphere? Beats me. The others have been middle aged women.

Now, this guy was scruffy. Looked kind of like a bum. But I had ZERO problem with him talking to us… it was when he reached out to grab my kid’s foot that I went from friendly and chatty to snarling mama bear. I’ve snapped the same way at well dressed middle aged women.

Here’s the deal…

People may just be social. However, recent research shows that our behavior can, in some ways be governed by the pathogens we carry. People may be more likely to be spontaneously social when they are contagious but not yet symptomatic with influenza.

http://www.academia.edu/533848/Change_in_Human_Social_Behavior_in_Response_to_a_Common_Vaccine

There are a number of pathogens that can profoundly change the behavior of the host organism. Toxoplasmosis may have few obvious symptoms in adults…but can actually change behavior and personality in subtle and dangerous ways.

And of course there are those zombie ants, who get infected with a fungus that induces them to climb to exactly the right microclimate, latch on, and die, thus allowing the fungus to propagate.

http://www.telegraph.co.uk/science/9953571/There-are-zombies-among-us.html

So when a nice older man or woman approaches my child and reaches out to touch them (why is it always the feet?) they may be a perfectly nice “auntie” being friendly and sociable…

Or they may be a zombie aunt.

(postscript: I did in fact get sick once, possibly this encounter, I don’t remember, but from one very like it. Fun times.)

Trudge trudge trudge

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In the morning I go to drop both kids off with a woman far more competent than I at this whole parenting nonsense–she handles Miles and Shiny and her four and five year old and sometimes a couple neighbor kids and she’s SIX MONTHS PREGNANT. At six months pregnant I was lucky if I could get up and down the stairs.

Then physical therapy. Then back to get the kids and back home to talk to the DDS worker. I vacillate between wanting the house to be cleaner and wondering if I shouldn’t have had the person who cleans for me in on Monday, so he could see the full force of what it gets like.

I inhaled a tiny bit of sausage tonight. It is irritating and annoying but not blocking my oxygen, so hopefully it will not kill me before tomorrow afternoon. I have too much shit to do.

The two most likely suspects for taking Shiny after school are full… and her school program goes from 7:30 am to 2:20 in the afternoon. That’s door to door. It is the shortest school day she has had during the regular year since kindergarten, and I’m going to have to fight them to get her a little earlier so she can have breakfast at school. So after school care is important. The city is the cheap option. Then there’s the daycare down the street, run by one of our co-op members, not terribly more expensive per month, but the co-op mama is gluten free and aware and holds babies and doesn’t hold slavishly to schedules for their own sake and would probably be a better fit, not that it matters, she’s full. Shiny is first on her wait list and 7th on the wait list for the city.

If respite comes through, there’s other options, but I am not holding my breath. I feel like a schmuck for wanting her out of the house from 7:30 am to 5:30 pm, but that extra 3 hours in the afternoon (4 on Wednesdays) feels like the difference between surviving and maybe, possibly starting to get my health back. When it’s just me and Miles, we range through the house, go places in the car, do things, take naps, get shit done. When it’s me and Shiny and Miles it is hard to get out of my chair, I can’t leave them alone together for long and I *certainly* can’t take them with me. I can’ t just be upstairs napping with Miles while Shiny is downstairs, she’ll push a table over to the entertainment center, climb up and dismantle my network (which is currently located about 7 feet off the ground). I can’t tell you how many routers I’ve already gone through. It is crazy. If she were a typical 8 year old, she would actually be a force for order rather than chaos, she’d be able to make her own lunch, she wouldn’t be smearing shit on the walls, she’d be helping with her baby brother rather than clobbering him. I don’t often think about that, but today I must because today I need to make the case for services based on her disability, and that means pointing out EVERYTHING that is different because of her disability.

Horrible head space, but it’s for a good cause.

This sausage is annoying the crap out of me–I’m not thrilled that my next step is to go upstairs and lie down and put a c-pap on, I think it will just drive it farther down.

Ehlers-Danlos syndrome

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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.

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

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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.)

 

A step forward

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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.

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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

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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:

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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.

recovery in slow motion

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I don’t feel much better or worse than I did the day after surgery. Taking less pain meds overall, conservation of pain I guess? I just took a bolus, as it is late and i am tired of the everpresent ache.

 

So hard not to lift the baby. But teh most strainful thing I do is simply sit upright. Walking is easier. I want a bath so bad. Verdict is out on whether bathing is acceptable or not following a total  vag hyst. I’ve just got this tension that won’t leave. Some of the swelling has gone down, which means I can feel the stitches more, everything is sort of changing constantly without really progressing.

K is getting very tired. It is  both gratifying and concerning that someone stepping in to take over for me says, “Hey, this is exhausting.” Yeah.

Mostly for Judi

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Surgery went well, they managed to do everything vaginally as far as I can tell, so no abdominal incisions at all. I feel “crampy” at this point but I’ve had worse periods. The 6 hours following surgery were awful, brutal, mostly due to the catheter. for some reason I just do not tolerate those things at all. As soon as they took it out I started getting better super fast. On plenty of pain meds, but not loopy at all. Miles spent most of the night with me tucked in next to my side nursing, and it was actually one of the single most effective things for the pain. Crazy. Endorphins, I guess. About time I got some from breastfeeding! I’m on the motherbaby unit here, which is fine, it’s just funny because my baby is so big.

I have zero regrets about doing the surgery, I’m getting better so fast, i think I’m actually moving better now than i was before the surgery, thanks to lots and lots of pain meds (I’ve been off NSAIDS for a while due to prep). They should be releasing me today.

Yesterday was so hard, getting the nursing staff to listen was really difficult. We’ve all figured each other out now so it is much easier. There was an 8 hour period where I was not being adequately medicated because they were not grasping the whole concept of “just because I can’t have a saline lock doesn’t mean you can’t leave the IV in and running at a low rate to keep access.” One nurse decided to blame me for my pain level, and we fired each other. I still don’t get what her issue was. Most of the other nurses have been fantastic. One of them I had to actually beg to not take out the second IV until meds were given, but once I got her to actually pay attention and listen she actually did comprehend and leave it in until they could give me the Toredol.

But basically as soon as they took the cath out and let me out of bed, I was on the mend. They keep expecting me to need more help than I do, so they’re very pleased with my progress. Chances are I’m going home this morning, thank god, where I will be able to sleep and eat and deal with meds on my own schedule.

I’m still blown away by how well I’m doing today.