Now 2017 begins to same sort of lame duck swan song spiral into the nuttiest nutmeg nonsense. I reject all this nastiness about the year being lame, largely because - again - Chaya was a part of it. And every year of her life is a good one for me.
And Hanukkah is here to stay for at least another day
Chaya gets to celebrate her Ashkenazi (non-maternal but it's kinda a secular reform paternal side so screwit) by ripping down pieces our my very sacrosanct window cling menorah. She also gets a book for each night of Hanukkuah. Partially because I was acquiring them at a rapid rate and finally decided that one for every night of Advent was a bit much in one direction, while ten on Christmas Eve was a bit much in another. Our favorites so far include The Pokey Little Puppy and The Billy Goats Gruff.
There are some exciting features of 2018 to come. Exciting and scary. Little wee one will be a preschooler officially. This may be an adjustment from our current transitional strategy of visiting together for an hour or two. But she's warming up to the place, I think.
We are definitely hitting new milestones in independence. Longer times away for mommy will be coming (now that daddy's collarbone is healing enough for them to have some days alone together). Some longer mommy-daddy dates with PAAAAM to watch the bae. And the like.
And I'm sure untold mysteries await regardless.
So if I complain for the rest of this post, let it be known that I am largely overwhelmed with hope and gratitude. But a little kvetch even on Christmas can't be avoided.
Sometimes I feel like this country (or all countries) really do not nail it on health care. Political statement, I know. Everything feels so disintegrated and hodge-podge. Many of the pertinent areas in my life seem to remain clouded in wiggle words and mystery. And I feel like so many professionals and specialists rarely have a way of coming together for a more holistic approach.
In other words, prepare yourself for... f
...further installations of why rational and science-loving people are tempted to turn to alternative medicine and home treatments but then find that's kind of overwhelming and confusing as well! To the point that seriously I kind of get why it's just a matter of course that even the CDC is now banned from using terms like "fact" and "evidence"... In a world of too much and too little information, who the heck knows
TL;DR: My body is full of mystery. Most people's are. Almost nothing is actually sufficiently studied for any variety of reasons and doctors are kind of inaccessible or not up on things. And anything on the internet claiming to be foolproof is probably going to be contradicted immediately by something else.
...
We could start with the infertility issue and how all the doctors kind of contradicted each other. Nobody really agreed, but at the end something turned out just fine so no complaints there.
Still pretty much never got an official diagnosis. Some sort of gray area of "it's not even PCOS but it's kind of like that but not"
And of course the whole lactation struggles, in which basically an online Facebook site proved to be far more knowledgeable than any medical professionals (and made me a special source of information to my wonderful LCs even). Reason for this? There's really little ethical way to conduct valid randomized studies on pregnant or lactating women. You're basically stuck with cows and very small and shabby studies. That's going to be a theme.
And then there was this summer. Let's begin there again.
In August was awful physically chagrined. ER yadda yadda yadda. Cardiologist says all my bloodwork was and is fine. I was probably (most likely by a preponderance of that number on the scale because if your weight is high or low nothing else could ever be the cause of anything) dehydrated. Probably, even though my bloodwork didn't indicate that. BUT whatever. Low bone density. Heart issues (maybe?) Electrolyte imbalances. Everyone says let's gain weight and fix those hormones.
Shockingly compliant... I gained weight. My body had a tough time with that at first and it felt like things were getting worse instead of better, but that's leveled out. The heartburn is largely reduced. The fatigue is about par with what you'd expect of a mom of a two year old with occasional insomnia. I have no idea how that all measures out.
As soon as I seriously reduced nursing (and around the time I'd built quite a layer of estrogen boosting fat), things started going haywire elsewhere. Maybe it's coincidence that what used to be dry and sensitive skin is now perfectly moist, but in turn I now have raging eczema on my hands and elsewhere.
Ok that picture doesn't do it justice. My hands look disgusting, trust me.
The hands are pretty intense. I can't really go around without gloves of some sort. Anything that would cause me to sweat causes burning. Sometimes out of nowhere things flare up really badly and I can't bear to be touched and need benadryl to sleep. Sometimes it isn't so bad. Sometimes it makes me so much less present and able to be there for myself and my kiddo. So it's frustrating, though anything like this makes you appreciate the miracle and bounty of "normal"
I went to my PCP the same day because she's shockingly available. She said basically what I'd expected from a little internet poking around: moisturize like all heck, avoid obvious irritants and apply this prescription steroid 3 times a day. Call in ten days if it isn't markedly better.
I'm really not sure whether the steroid helped. But all the moisturizing and being super careful did get things down to "occasionally feeling normal" and improved enough to just be on the edge of potentially flaring up. To me this constitutes markedly better. I even went a few weeks with pretty much normal feeling hands (so long as I bathed and wore gloves and moisturized) The change in the weather and our time in San Francisco probably helped. I also followed a lot of the most common and endorsed advice on bathing, using epsom salts, and otherwise just protecting and preventing flare ups.
But it just cycles around and around. Sometimes everything feels fine except my hands are dry and a little cracked. Sometimes I need to go back to the steroid cream (that may or may not help, lord knows) and pray things settle down.
I watch when things get better and worse. There's definitely a regular pattern, whatever I can make of that. Things like "going to Chaya's future preschool with her and playing with the kids" seems to cause a flare up. Exercise is pretty much limited to the requirements of my personal trainer, Miss Chaya Papaya (she gets some good acrobatics in there). I am getting quite the burly arms with all the CHAYA JUMP. and CHAYA CLIMB (in which she walks up my chest and onto my shoulders before perching on my head and expecting a backward flip back onto the ground. She is big on MAMA run (carrying her in one arm). And CHAYA FLY (same thing but holding her parallel to the ground). She also helps with a number of yoga and pilates type mat exercises
I persist. And though I'm sometimes grumpier, I can keep it together for Chaya. It really can markedly decrease the quality of life in no time flat, though. I know this is nothing compared to some people's experiences, so I am grateful that I just sometimes suck it up and soak my hands in water with some benadryl afterwards (another thing that may or may not help)
So problem number one: I got a referral from my doctor to a dermatologist after a few months of things just not really improving. My appointment is over a month out. PCPs don't go too far into things and specialists can be insanely hard to corner in on (unless you end up in the ER and then you get to cut the line a bit, it seems).
And of course there's Doctor Google. Here's what I've learned; it's not that most folk remedies are categorically ineffective.
But it just cycles around and around. Sometimes everything feels fine except my hands are dry and a little cracked. Sometimes I need to go back to the steroid cream (that may or may not help, lord knows) and pray things settle down.
I watch when things get better and worse. There's definitely a regular pattern, whatever I can make of that. Things like "going to Chaya's future preschool with her and playing with the kids" seems to cause a flare up. Exercise is pretty much limited to the requirements of my personal trainer, Miss Chaya Papaya (she gets some good acrobatics in there). I am getting quite the burly arms with all the CHAYA JUMP. and CHAYA CLIMB (in which she walks up my chest and onto my shoulders before perching on my head and expecting a backward flip back onto the ground. She is big on MAMA run (carrying her in one arm). And CHAYA FLY (same thing but holding her parallel to the ground). She also helps with a number of yoga and pilates type mat exercises
I persist. And though I'm sometimes grumpier, I can keep it together for Chaya. It really can markedly decrease the quality of life in no time flat, though. I know this is nothing compared to some people's experiences, so I am grateful that I just sometimes suck it up and soak my hands in water with some benadryl afterwards (another thing that may or may not help)
So problem number one: I got a referral from my doctor to a dermatologist after a few months of things just not really improving. My appointment is over a month out. PCPs don't go too far into things and specialists can be insanely hard to corner in on (unless you end up in the ER and then you get to cut the line a bit, it seems).
And of course there's Doctor Google. Here's what I've learned; it's not that most folk remedies are categorically ineffective.
They probably are ineffective and could well be detrimental. Because a lot of common DIY remedies (or weird nutritional supplementation) turn out to be harmful in some way after being studied.
Or sometimes just expensive. Or sometimes sort of effective beyond the placebo effect. In a condition that takes a fair while to clear up and can be triggered/worsened/mitigated by any number of causes, it's a little difficult to tell.
Who knows. We only have anecdotes to go by and those are bogged down by plenty of confirmation biases, chance, idiosyncrasy and .. well basically you know how if you go to the Yelp reviews any given place is both "THE BEST" and "THE WORST" place ever?
Who knows. We only have anecdotes to go by and those are bogged down by plenty of confirmation biases, chance, idiosyncrasy and .. well basically you know how if you go to the Yelp reviews any given place is both "THE BEST" and "THE WORST" place ever?
I feel like if you even go to look up a simple emollient, amazon reviews are half "nothing else at all ever worked and this has been a life saver" and half "did nothing for me and maybe gave me a tail."
I swear if you look up "diet + eczema" you will find the following: (1) dermatologists saying there is absolutely no evidence that links diet to eczema for the majority of people (though actual allergies are associated with flare ups) (2) several pages insisting diet is the only thing that matters and telling you to avoid apples and kale and dairy because they're the worst inflammatory things, (3) more pages insisting diet is the biggest thing and telling you that apples are the best, kale is awesome and yogurt is super important.
So what's the problem with following only high quality evidence-based review for anything other than medications and really standard stuff you're already doing? Well one it takes a long time! Obviously. I've had minimal success waiting things out in a cautious treatment plan in the past. But it's also that meta review after review basically says "there are no good studies on this." THIS = anything but a number of drugs that require medication. And maybe some suggestive stuff on fish oil and vitamin D. Lots of maybes on probiotics. But all of that "requires more research."
I suppose that's the big problem with evidence-based high quality studies: they are expensive, involved, hard to do and need to be replicated to be convincing. There's some good incentive with medication since it's part of the approval process and pharmacies stand to make a ton if they get approved. There's a lot less with other stuff. In fact if you're building a holistic wellness empire, you kind of thrive on being beneath the medical radar. Jade egg it up, baby.
And that explains the appeal of the CAM Can Can for even the most skeptical. With the medications, you know a lot. You know stats on efficacy, meaning you know they aren't miraculous or 100%. You know all the risks. You know the failures. You know what you're getting. Sort of. Except that "eczema is a poorly understood condition" and "it's a very individualized condition" so people spend years and years trying to match the right treatment even with purely alopathic approaches. And trying each one takes time.
Then there's the unknown. Do I think that somebody's anecdote on the internet and/or some novel dietary regimen really passes muster to convince somebody that more likely than not it will help? Not at all. BUT do I think that sometimes it's just a gamble that could pay off? Sure. Bodies are idiosyncratic. Some really random thing did work for some really random person maybe. If there isn't evidence that it hurts, then... well maybe I'm also that random person. Do I think it would be better to avoid any restrictive diets after coming off several years of being underweight? Sure. Is it still tempting to just eat more papaya and less tomato or to cut out gluten (because that is the problem for every condition mind you). Of course.
Because we don't know it doesn't work. I read on the eczema support website that one person found relief by rubbing banana peel on her hands. Nobody has ever studied that. They were even asking if that made any kind of sense. Fell well into the "doesn't hurt" category. Didn't really help but then it may have not-helped as much as steroid cream doesn't necessarily help in the moment.
At any rate, I've been told by many people that one silver bullet thing helped them or their children. Wet wrapping is huge and clinically approved for severe cases (but can be done wrong). That's basically sleeping in wet clothes. Though other advice says limit getting wet as much as possible and my one time with it was at the very beginning of a pretty intense subsequent flare-up. Coconut oil has a little evidence behind it and - if you aren't allergic - can help. I'm too wussy for bleach baths, but I hear they're amazing. Epsom salt soaks may help. I know bathing and then moisturizing does. Trying to keep the house clean is kind of a double-edged sword since it probably helps to have a clean house but doesn't help so much to get the house there...
I don't really know if this will ever improve or if this is the new "normal." I know it's going to be a slog. I celebrate the years I've had with ample fingers and great physical fitness, but I also will try to accept the new levels of discomfort and find ways to stay positive through that.
Possibly while slathering on Shea Butter Manuka Honey Halibut salve because seriously... it might work?
Chaya seems to prefer rubbing her eczema cream in her hair and/or on her toothbrush.
Another things that, hey, might work? Who knows!
So what's the problem with following only high quality evidence-based review for anything other than medications and really standard stuff you're already doing? Well one it takes a long time! Obviously. I've had minimal success waiting things out in a cautious treatment plan in the past. But it's also that meta review after review basically says "there are no good studies on this." THIS = anything but a number of drugs that require medication. And maybe some suggestive stuff on fish oil and vitamin D. Lots of maybes on probiotics. But all of that "requires more research."
I suppose that's the big problem with evidence-based high quality studies: they are expensive, involved, hard to do and need to be replicated to be convincing. There's some good incentive with medication since it's part of the approval process and pharmacies stand to make a ton if they get approved. There's a lot less with other stuff. In fact if you're building a holistic wellness empire, you kind of thrive on being beneath the medical radar. Jade egg it up, baby.
And that explains the appeal of the CAM Can Can for even the most skeptical. With the medications, you know a lot. You know stats on efficacy, meaning you know they aren't miraculous or 100%. You know all the risks. You know the failures. You know what you're getting. Sort of. Except that "eczema is a poorly understood condition" and "it's a very individualized condition" so people spend years and years trying to match the right treatment even with purely alopathic approaches. And trying each one takes time.
Then there's the unknown. Do I think that somebody's anecdote on the internet and/or some novel dietary regimen really passes muster to convince somebody that more likely than not it will help? Not at all. BUT do I think that sometimes it's just a gamble that could pay off? Sure. Bodies are idiosyncratic. Some really random thing did work for some really random person maybe. If there isn't evidence that it hurts, then... well maybe I'm also that random person. Do I think it would be better to avoid any restrictive diets after coming off several years of being underweight? Sure. Is it still tempting to just eat more papaya and less tomato or to cut out gluten (because that is the problem for every condition mind you). Of course.
Because we don't know it doesn't work. I read on the eczema support website that one person found relief by rubbing banana peel on her hands. Nobody has ever studied that. They were even asking if that made any kind of sense. Fell well into the "doesn't hurt" category. Didn't really help but then it may have not-helped as much as steroid cream doesn't necessarily help in the moment.
At any rate, I've been told by many people that one silver bullet thing helped them or their children. Wet wrapping is huge and clinically approved for severe cases (but can be done wrong). That's basically sleeping in wet clothes. Though other advice says limit getting wet as much as possible and my one time with it was at the very beginning of a pretty intense subsequent flare-up. Coconut oil has a little evidence behind it and - if you aren't allergic - can help. I'm too wussy for bleach baths, but I hear they're amazing. Epsom salt soaks may help. I know bathing and then moisturizing does. Trying to keep the house clean is kind of a double-edged sword since it probably helps to have a clean house but doesn't help so much to get the house there...
I don't really know if this will ever improve or if this is the new "normal." I know it's going to be a slog. I celebrate the years I've had with ample fingers and great physical fitness, but I also will try to accept the new levels of discomfort and find ways to stay positive through that.
Possibly while slathering on Shea Butter Manuka Honey Halibut salve because seriously... it might work?
Chaya seems to prefer rubbing her eczema cream in her hair and/or on her toothbrush.
Another things that, hey, might work? Who knows!
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