It's Beginning to Smell a Lot Like Pie Season...

Pie Season is upon us! The tree has gone up (kind of a threadbare plastic patchy way so far, but it'll fluff up with some lights and merriment). The family warmth is toasty enough to roast chestnuts and mull cider. THE SEASON IS HERE.

With a side of jet lag and a bit more whiskey, whimsy, and cookies than mommy anticipated indulging in "last night" (every night for the next week or so)

Gateway passed: Thanksgiving! Per tradition, our little family unit merged with the greater Wright/Gelfand unit in San Francisco to fete family, friends, food and... crumble. There was pie too, but crumble was the crowning jewel on that particular night. Close enough.

What can I say. The food was good. The company was fantastic. The Chaya beast was WILD but way easier than the year before when she was easier than the year before when she was... Four is not easier on the grand scale. Four is sassy staking of independence and even bigger more complicated emotions 90% of the time. But for travelling: four is amazing. Four is "able to follow and understand instructions." Four is "not NEEDING that nap we just shredded through." Four is "mostly no longer needing specialty everything packed in a giant suitcase to add to the chaos of air travel." Four is "carry on"

Four is "tantrums and mischief instead of nonstop agony and bellyaching" Four is "sleeps in a normal bed all by herself, but definitely won't be napping this trip." Chaya continues to exhibit some sophisticated executive functioning understanding in removing herself (and a parent or two) from the hubbub when she's getting overstimulated, which is an added bonus.

Four is "actually really chill about the three hour delay on the way home, even though she's sick and there's a baby on the actual plane crying just enough to wake her up when she nods off."

Four is also, endearingly, "happy enough to be home that she willingly demands her bedtime ritual a half hour early upon finally returning home."

But also enjoying being away.


We've spent a goodly bit of the vacation in Golden Gate Park

Chaya and Gramma Lisa made cookies. Chaya gets cookies. She can mix and pour like a pro, but she knows the real trick is when you go to lay them on the sheet... just take that serving spoon and start shoveling into your mouth. Efficiency!!

Four is also "totally ok to leave home with Grandpa Tom for the afternoon/evening while the adult folks gallivant off to Cirque du Soleil"

It was, basically, mad lit. Like literally well lit and also incredible.

All in all a cool trip. A long Odyssey on the way home involving some pigs and a few typhoons and a cyclops or two. And now we're home. And it's Advent and there's waiting.

Always waiting...

... like on test results and proposed treatments. This is me after all.

My affliction-of-the-month seems to be still annoying me. So far the biggest respite has been "not using the original prescription for the thing I don't have." But some positive treatment would be nice too. The current medical theory is... wait for it... wait for it...

... you'll never guess...


... wait a sec longer....

... ok the script's already on Ebay, fine...

And the current theory is:

wonk hormones!

Ahhh a classic. I like keeping some consistent motifs going through my entire adult life so that's appealing.

Wonk hormones or... cancer (buzzzzzzkill, much?), but it's always "or cancer" isn't it? Well, you have the flu or cancer. You probably have a cold sore... or cancer. Looks like a bear ate your leg, or maybe it's cancer. Given how many people in my life have had cancer and how multifaceted its symptoms can be, I can see why it's always or-cancer, but still.

 Anyways the doctors were all like "no no it's a crazy loooooooooooong shot, but just in case... can we remove a part of your delicate area and then poke it a lot more for a few weeks before telling you anything?" So that was fun last week  (it actually had its high points because awesome people in my life, but that specific moment in itself... not gonna hit the regular leisure activity rotation).

I've had, of course, the usual paranoia frets turned logistical fantasies about how we'd manage chemo visits and and various things like that with Chaya and Andrew's work and whatnot. Thinking if I have to lose my hair, I'm gonna have it braided into little voodoo dolls of me for far away friends to hug when they wanna send their support. And - just in case - how I'm going to change the rules of metaphysics and theology to make sure haunt my atheist friends who are not getting off the hook that easily. In reality, I'm banking on the hormone thing even though I have yet to see positive results from that line of attack, and remembering with every freaky odd little "symptom" I am suddenly more attentive of that actually no I've had that wonky of a body for longer than Chaya's been alive.

Glad for the distractions of holiday, family/friends, general creation.

Creation!

Of late I've had a bit of a "so what" creative movement recently.  In a freeing way.

So what as in  So what that I don't have an audience for what my creative writing. I sometimes miss the Google Plus days of long comments and creative feedback and exchanging energies. The interplay of sharing our creations. I miss being the secretary of a large group who gave me free rein to basically Infinite Jest meeting minutes and having that captive audience. I miss having my legal writing make impacts on people's lies. And I'd like to find a way to use my talents of course. I'd like to connect.

But in terms of whether it's ok to carve out writing time to write what isn't necessarily going to be read and definitely isn't going to be published? In terms of whether there has to be some reception or publication to justify the act of writing itself...

Who cares? It's a hobby not a vocation. If Andrew doesn't make it to Nationals, does it mean he should quit biking? Seems like no. SO why not demand a Sunday morning to hone a short story my mom will read?

I'm glad people enjoy hearing about Chaya, but that doesn't mean it's all I have to work on. And while I've outlined the dicier aspects of creative writing (how we borrow the stories of others and our impressions of them in ways that border on ethical consideration, mainly), well... it's satisfying like nothing else. It's creation. Harnessing words and feelings and images. So, bad poetry, stories that inevitably don't end, fragments. On they will come and lurk here and there between the kid photos!

Same but even more so with drawing. We draw a lot in our household, of course - and I've learned to fast-sketch on command. I'm in complete awe of Chaya's determined artistry and what she draws just gives me chills. She's so expressive. So determined. So fully enraptured. It's inspiring beyond belief.

Through my childhood and young adulthood, I've always been a doodler. And when I was younger I really enjoyed sketching clothing designs I would never learn the skills to design. I also know that I lack the 3D spacial skills to create accurate perspective and the attention to detail to execute anything faithfully. Without the ability to execute faitherfully or to intentionally and creatively diverge from those rules.

Unlike with many of my hobbies (writing, singing, dancing) I know I'll never be particularly satisfied with anything I do in that medium. Unsatisfied in a different way than the dissatisfaction garnered from areas in which I know I have talent. So I've doodled whimsically and avoided any hint of intention or craft. Of late I've thought, again, who cares? Watching Chaya sketch over and over again, erase and draw more. It brings me appreciation for the process over the results. And that does have meaning for me.

 I've been saving room in my journal for a sketch a day and practicing little challenges like hands. And it does bring me pleasure, perhaps all the more for it being purely for pleasure and never for craft.
The process! There's magic in the process of drawing. Something about drawing a person's face, in particular. The intimacy of tracing your eyes down every line and contour of a face. Reveling in how the forehead slope into the plateau of the eye. The hook of the nose and the tilt of the lip. The breadth of the jaw. The tilt of the chin. The lushness of the eyebrow or lash. The idiosyncratic wrinkles of a face that capture a million moments of expression and habit and movement..

Looking at a face from a writer's perspective is different. Immediately dissolving these basic geometrical patterns into metaphor and pebble word monuments. It's slooshier. More poetical. More granular and rational. To describe what you see when looking at a face to draw it would risk technical monotony. But the breeziness of simply absorbing angles and textures and colors and shadows has a deeply intimate connecting feel.

I'd been hesitant to draw my loved ones a bit because the execution is so sloppy and condensed and so misses what I feel and see, though Chaya makes me draw her a ton. But that moment of tracing with the eye becomes an ocular caress. It's so deeply sensual, it almost feels scandalous.

And so I carry on! Doing my thing(s), fun and otherwise. Fretting from time to time. Grateful always.

With creativity, with holidays, with Advent, with medical mysteries unfolding into oblivion... with it all comes rest and play and wonderful times with wonderful friends and family and

and of course




Pie. Or crumble. Or both! Why not both??

Pain in the Parasthesia and the Amorphous August (Change in the Air?)

And it's August! I feel so conflicted about August these days. On the one hand it's my BIRTHDAY MONTH! And (more notably) Chaya's.

One

Two...

(Almost) THREE!!

 And the whole East Coast family comes out to visit.

 And it's all a big party festival type thing.


 On the other, it's usually hot and smoky and basically the least Adella-friendly weather of the Pacific Northwest year and there is NO stopping for a break unless you manage to wind yourself up in the hospital like I did last year. Oh what a year it's been!

Gotta say I'm not magically healed, but I guess we've ruled out a ton since then; and I certainly am capable of some essential feminine "cycling" with a little extra weight and some birth control pills.

I think I threw out my list of excluded diagnoses not long ago, so I'll just add that the neurologist thinks my brain looks beautiful, my "neuropathy" at this point is a mere parasthesia, and my cervical MRI/EMG looked unconcerning to the orthopedist. He's pushing "nerve blocks" which sound 1980's sci fi to me, but don't actually involve becoming an android in any recognizable way.

. There are many more tests on the horizon as I pinball between my various specialists, but I'm also just kind of learning to honor the messages my body is sending (pain is a pretty specific message the nerves can telegraph out for myriad reasons) and realizing they may not be telling the whole story in an unbiased fashion. It seems to be a theme that once something triggers or damages nerves in any part of the body they can be eternally sensitized and misfire signals. So take seriously but not literally? Meditate a ton. Lean into the pain. Honor my body. Etc. etc.

My reflux issues have resurged with a vengeance, so we'll be going ahead on that endoscopy as soon as I finish this three month pre-req and locate a new doctor since the one I saw just left the area. Eating as I can. Realizing I've had symptoms of this for a lot longer than I realized and maybe my restricted eating prior to now based on "not feeling right" was kind of intuitive of that.

The heat ain't helping, but we're fanning ourselves through it anyways so long as the air doesn't get any thicker and today appears to be a delicious break for some pouring rain at the county fair!  

Andrew and I are mulling our overwhelmingly plentiful options for climate controlling the house. We've flirted with curtains, window treatments, awnings, new-windows, new roller shades, screen doors, and maybe with ductless air conditioning. A lot of feelers are out there, but there's still a ton of uncertainty. And let's not discuss my struggles to figure out a way to actually water our dying trees and arborvitae.

We might just convert the living room into a walk-in fridge and call it good. Oh August and your smoky heated ovenly ways...

But party!! County Fairs. More parties. Plane trips. More parties. Preschool parties.

It's all gonna be ok. Just hot and sweaty for another eon.

Meanwhile things are changing, as they always do.

As promised, the Alex and Olivia brigade have moved back East. Chaya's very first preschool teacher also announced she's moving at the end of the month. And most recently Chaya's good friend Sebstation may be coming back from his many months in Mexico and moving back to Bellingham. In bigger picture news, the Preschool may finally be poised to move ahead to full time school licensing, which would be huge for them and expand their options grandly.

And, the church houses Chaya's preschool - and which I had taken as a spiritual roost this spring - is having some major transition as well. They cannot - by their estimation - afford to continue paying Helen, the rector. After some stir, much confusion and a variety of surprise announcements, her last service will be at the end of the month.

Fortunately it seems like the preschool is mostly insulated from this (there were some concerns for a while about what it all might mean), but it has the most unfortunate effect of leaving the church without a minister. No, not without a minister, but without the minister who drew me to the church in the first place and whose presence mediated some of the challenges of attending a church that is ultimately not very family friendly at this juncture.

A church without young families in the community has a circular problem. With few children, there aren't the resources or involvement for Sunday School or youth ministry, but without youth ministry, young families cannot participate. The church ultimately can't grow and the few families who do attend will likely be limited in their ability to reach out and participate. As such, the church can't grow.

   It's a moot issue in one sense, as Andrew is secular and prefers to take Daddy-daughter running time with Chaya when I go. But it's still a big loss of potential community and can feel a little isolating. I still long for a spiritual community that I can obliquely share with my family. There are so many lovely people at St. Paul's, but they are at a different place in their lives for the most part.

I had previously leaned towards attending St. Paul's Bellingham (bigger community and my dad still attends) more often, but I didn't because Helen gave the most amazing transformative sermons and attended prayers in a way that outright spoke to my soul. .

Set adrift, but in an open way. I don't really know what will evolve. What will happen at the nearby church? Life is full of question marks and different tides to float down mindfully.

And honestly, there is now a chance that our own family might move. It's too ill-developed a chance to discuss, but in some grander ways I think we understood that living in Mt Vernon while Andrew works at EI in Mukilteo was perhaps not sustainable for the rest of our lives. I was hoping to live somewhere for longer than 2 years (I guess 3 is a record in my adult life) and we still might, but there are a series of opportunities that may be coming together. If they do align, I think it would quite appropriately be called Fate. Or something akin to that. Maybe just "an offer too good to refuse."

More on that later perhaps if anything develops. But it certainly lends to the ebb and flow and changeability of life.

I'm surprised at how much more easily I contemplate moving at this point than previously. Moving from Bellingham was painful and hard. It took a long grieving process and I don't think I would have handled it as well if I didn't have friends and family out here (it helped was still so close to Bellingham). Now, I still feel very attached, and would love to move back to Bellingham or stay here forever. But I'm also kind of at a *shrug* and adventure if it's the right place and the right time.

I wonder if some of it is Chaya growing older and removing myself further from that cocoon of the first few years. Somebody told me before she was born that I would nest deeply into HOME when she was born and it would be a small fiercely protected world of her and me for a while. In retrospect that seems apt. Now that she's a little more mobile, adaptable and independent, my own adjustments to a new place seem less devastating and more interesting.

Or maybe I just recognize that there's a wind of change in the air and am ready to cast myself aloft into it. To every thing there is a season turn turn turn turn turn turn and keep turning because Chaya is impervious to the nausea and dizziness of a grownup AAAAAAAAH KEEP TURNING!!!

Ok, and with that, we shall now enjoy our little cool spell and celebrate Chaya's impending birthday with a trip to the county fair!

Bring on the animals for petting!!

April Showers on your Wedding/Moving/Surgery Day

April! Andrew and I recently celebrated a handful of anniversaries. Our first year in the new house and town.. Five years married. Six years since that fateful April Fool's engagement. Five years of Andrew's engineering employment with old EI-EI-OOOOOOOOH-Nelly!

It rained on our wedding day. And oh - vernal varieties of pluvial pulchritude - it's raining a lot these days too. Guessing there's some kind of heavy handed moral mummery about how new life must spring from the dreariest dampness in there.

But let's start with the flowers. Because they're flowering in all their allergenic glory. Even Chaya's apple tree has survived that hot and dry summer and cold winter. It's looking quite verdant already.

Our little flower herself continues to spew brilliance (only 50% snot and phlegm-based). The youngest Wright is clearly no longer a piddling two and a half.

 No no, she may not be three yet, but I am not quite there for reporting age in six month increments. She's got such a depth of complex syntatical structures, wicked ideas, numeric understandings, emotional nuance, and coordination that blows away her February self. As predicted, her time in preschool has attended a major mental, social and physical spurt. Kid is most definitely coming up on the exciting TWO AND THREE QUARTERS. But right now, more like "2.7" We leave to you to decide if that's base 12 or base 10 (Andrew joke).

We're still on a schedule of twice weekly preschool with a little music class mixed in there. This summer, we'll escalate to thrice. Because, well, she likes it a lot. Itty bitty Art School suits her.

We're going through an appropriately artistic phase with an obsession over markers, coloring, and drawing. She's made quick magnificence of her first coloring book. And mommy and daddy have both been drawn into (har har) the chromatic Fauvism. Our meals now involve several pads of paper and the three of us all scribbling away in our own separate spheres.

Can I just say that washable markers may be the best invention ever imagined? Chaya also rather enjoys markering the table, demanding I spray water on the drawing, and then wiping it up with a wipe. This alone is an art project. And the marker actually completely comes off. Yes, daddy and mommy have also started coloring straight on our brilliantly cleanable Ikea table. Not so much on our faces in the same exuberant way that Chaya likes to. Maybe in time.

The elder Wrights continue to crumble but in a loving way.

After a seven month stall in healing, Andrew has finally been cleared for plating. This means he'll be a little more Wolverine and a little less lamed (fingers crossed). Basically things are just not knitting together right in his collarbone, so they're going to put a little mechanical wizardry in there to start the healing process all over, but much faster. He'll be going in sometime on May 3rd (exact time to be determined in cable serviceman style with a last minute informative phone call just to muck up childcare and the like). Then probably some time in a sling and maybe another month or two of healing. He gets to keep using his tantilizingly-named "bone stimulator" in the meantime and take the wretchedly-redolent Vitamin D drops in the interim.

Not to be outdone, I've got my usual rotating health oddities. My hands are currently de-chillblained and largely look like hands again. My reflux issues come and go but are currently a little mellower on a very observant diet. I had the ever exciting "barium swallow" test, in which I swallowed radioactive soda and got pictures of my insides taken. They were beautiful, but revealed no abnormalities. So that's goodish news. And I've currently received a prescription for a lower dose birth control pill after a "fun" tour through actual hormone replacement, which left me with the full scale progesterone miseries.

So I go back to some prior issues: back, arch, and neuropathy. I have no idea where one thing begins and another end but it adds up to "not super able to move/sleep/exist without some kind of serious stiffness and discomfort." I used to think numbness/tingling in my hands and feet was just part of the Raynaud's, but I guess not exactly. I've always have hands and feet that are prone to falling asleep faster and occasionally get said neuropathy. There's also tingling that seems to come from my lower back and down my leg. There's tingling that seems to come from my injured arch and the tarsal/tibial area around it. And there's an increasing bit of weakness and muscle spasm in a very tight leg that doesn't thrill me. I've got knots in my calves instead of muscle these days and it hurts much worse after walking. And I get some seriously reduced sensation in my right leg and foot right now.

The tingles touch my fingers, with some reduced sensation sometimes and some weakness that may just be texter's thumb.  I've been waiting much of the year for a neurology appointment that will not come until July. In the meantime, I am limping along conjuring up slivers of body for other specialists to look at. A podiatrist is arranging for custom orthotics to help the pronation and arch issues. It's quite possible that the old running injury is turning into tarsal tunnel syndrome. It's also possible that whatever compressed disc in my lumbar region is causing sciatica, so I'm seeing an orthopedist and have had an MRI done. My doctor finally sent a referral for a electrodiagnostic test through the orthopedics in the interim. Lord for all I know the twitching ain't fasticulations as much as the first stages of ALS. Wheee. Who knows. Or maybe it's all in my head and i'm taking psychosomatic to special new levels. But enough about my medical mystery mayhem... for now.  I'm out of shape, but still alive so far and awaiting new and exciting testing to hopefully tell me if there's a progression I'm due for or maybe even some kind of treatment. In the meantime, I'm happy for whatever energy I have.

It's cute that whenever I say Chaya goes to preschool she says "mamma go to doctor." But you know, I like to sometimes mix it up. Sometimes Mamma go to church. Or I try. I attempted going to the 8 a.m. "service" at the church I attended on Easter. This because it fit  better with our current schedule. But turns out that it kind of lacks anything I'd connect with church other than being in a church. That is, it was five women who read the Book of Common Prayer together for a half hour. No music. No sermon. No standing or sitting even. So back to the drawing board/Ikea table. We've talked about maybe I go to the actual church service and let Andrew know if their coffee hour is sufficiently full of "little treats" to justify dropping in to say hello to coffee hour.

And while I have that old present of the present, I'm trying to learn to be present in those present moments.

I always go back and forth with my internet addictions. I think there's a fair deal of histrionics over our usage of electronics, but I have noticed that I am much terser with Chaya when using my smartphone. I know there's research supporting that parents tend to have harsher interactions with children when their using their phones. I always question cause and effect, but I do think that a pattern I notice is that Chaya will momentarily be off doing her own thing. I'll then let my thumbs wander to the lockscreen of the ol' pixel. And of course just when I'm in the middle of a long diatribe against somebody else's strange political developmental theological dietary theory... MAMMA! And if I close the phone I'll lose everything. If I keep writing Chaya will get more and more rabid. And it gets high pressure. It gets intense. Crazy 2.75 year olds are prone to doing risky things when unattended. And that's just arguing. What if I've actually wandered into a conversation with somebody I liked?

So I'm trying a little bit more just to take minimal steps to limit my wandering texters.

It's actually quite amazing how easily the temptation can be mitigated just by obstructing habit. I turned off all my notifications, as well as turning the sound off on my phone. So if i look at the phone face, there's nothing there. Blank and boring. There's a lockscreen and an empty home page. I've also started carrying the phone in my bag instead of my pocket. And I've started leaving it on the charger in the kitchen when we're home.

To make this more doable, I've been carrying at least one pen everywhere because I'm one of those people who needs to take notes constantly. But that seems to work pretty well. The issue of the camera is still tough, since I need to constantly photograph my child's every moment. Sometimes I wish I still had a standalone camera, but at least when the notifications are off, I don't get horribly distracted.

I'm still constantly hovering over the computer, but at least it's usually locked with a screensaver that Chaya likes (pictures of herself).


And so we stumble on with our slings, our surgeries and our rainy days. Fortunately little Miss Thing has a rain suit and boots. And the rest of us will just spray ourselves down with mildew killer and wait for the sunshine (and all those fun allergens!) with a fist full of tylenol and claritin!

Sprung Past the Aye-aye-ds of March

Mid-March? Spring Equinox?? Zounds, we are nearly coming up on the one year anniversary of our Mount Vernonite status! Exciting. Amazing to think that 1/3 of Chaya's life has now been here and it's going to keep expanding from here. Big girls is bursting ito 4T as we speak!

So far, March goes well. Nobody was stabbed on the Ides. Saint Patrick's Day occurred. Oh that magical day where we celebrate the fact that Irish Americans maybe had a tough start in the US but then gave us green beer and big parades... Or is it when S. Paddy the Leprechaun sneaks into houses and leaves green jello in the toilets? I can't keep up!

 Saint Patrick did not hit our house when it comes to snakes. Thank goodness, because Chaya is a budding herpetologist here. The Muppets on her diapers are "frogs" and I'm pretty sure her first imaginary friend was a "snake" who lives and sleeps and talks to Chaya about lord knows what (fruit maybe? She does like to eat fruit). Everything long and circular is a "snake" in Chaya world and she loves them. Makes sense, given all the snakes in her books are quite happy and delightful. But snakes are admittedly pretty cool. She also digs chameleons and lizards, because they are also pretty cool.

Mostly for St. Paddy's day, we celebrated by wearing a little more green (and orange where possible because we are Protestant), and eating greener food. Pesto on shamrock ravioli totally is Irish, right?

Next weekend will be even more exciting (albeit less chromatically emphatic). On Saturday we go in for Chaya's second haircut. And then... oh and then... Mommy and Daddy are getting out of the way so Chaya can have a full day with Gramma Pam. Chaya loves GP (or PAAAAAM as she still calls her), and often banishes mommy to the kitchen when they're having a playdate. But this will be the first time Pam will get to put Chaya down for a nap. Mommy and daddy, meanwhile, will be going to their first PNB performance in a handful of years. It used to be our thing, so I'm kind of excited.

The next weekend will be Chaya's first observed Passover Pasach. Ohhh yeah. Gramma Lisa and (Not-Grampa) Tom (still working on his official title there!) are visiting. We have a children's Haggadah involving a slightly psychadelic and terrifying spider (Sammy!) celebrating his very first Passover. We'll see how Chaya tolerates it. I think we really need like twenty different illustrated haggadahs to keep up with Chaya's "Mamma READ A BOOK!... DIFFERENT BOOK!" Preferably featuring snakes, bunnies, and dinosaurs. Sammy the Spider is pretty good, but there are some pages with a ton of WORDS per picture.

There will also be an Easter get-together and egg hunt. There will no doubt be cute photos and chocolate bunny goo smeared everywhere!

And of course we'll see how I do with the holiday weekend. The reflux abides (dude does it), but it really does seem to be keeping a bit more under control when I follow the dietary guidelines for LPR. This includes basically cutting out several delightful foods (garlic, onion, chocolate, coffee, tomatoes, and anything with a pH below 5, such as almost all fruits) and spices. Also best to stay upright for 3 hours after eating and I prefer to go to bed fairly early, so Passover will be an interesting stretch for me. Especially after Daylight Savings time. We may have to fudge the sun-down and employ some black out curtains for Chaya's bedtime alone. I'm also realizing that as traditionally made, I can basically have the roast egg, parsley and/or romaine, some whole wheat matza and maybe a banana larabar crushed with water to approximate Charoset. We'll swing it.

Before we get to all that, I have several lightening round specialist appointments to run through. ENT on Tuesday. Orthopedist on Thursday. I'm going to go ahead and make the original appointment I scheduled with Everett Rheumatology before getting the earlier appointment, because I'm still getting rashes/chillblains and a few other symptoms that would make a specialist in Raynaud's in particular useful.

I'll try to refrain from kvetching about all my maladies for the rest of this space, but let's pretend I'm actually being profound instead. It's weird. I really do feel like the weird crap my body is giving me is fine, but I also feel this persistent guilt and incredulity about the ways it limits me. When I go out in slightly chilly weather, I seem to get a bad reaction in my hands that can last for a few weeks. I'm still sensitive to heat. My right arch and back both seem to flare up when I do much of any exercise. And if not that, then the reflux makes most exercise too unpleasant. I have pinched nerves or neuropathy from my upper back into my hands that makes my wrists and fingers feel weak and some moving and lifting uncomfortable. It goes on. And I still don't enjoy or succeed going out late.

So I've slowed down a ton in the last year or two. I have even more dietary restrictions than before, so socializing becomes a little more difficult. The dry eyes and mouth makes all kinds of things more uncomfortable. Travel really zaps me. Etc etc.

And again, as long as I'm in my little cave, I think that's fine and just life, but as soon as somebody suggests we do something "fun"... well I feel like I'm bleeding out all the fun I had in my introvert reserves. I feel bad for Andrew, who has so many things he wants to do, trips to take, adventures to make. He's dealing with his own weird limitations in a slow-healing collarbone (probably low vitamin D). I think that has helped him understand a bit of where I'm coming from, but it's still kind of several degrees of magnitude apart. So, trying to manage that balance.

I am realizing that I"m only 35. I feel like so much of life is behind me, but by even conservative estimates, I'm just shy of halfway through my likely life. I have aches and pains through my body. I don't know what that means but that I"m not "old" and I'm not infirmed exactly. Just limited. And hopefully that I have time to discover ways to work with my body instead of trying to work against it. And hopefully I can still be fun for Chaya somehow.

I was also realizing that Chaya and I will have a very different relationship than I did with my mom. In some ways. I was the second child so my childhood is certainly informed by that dynamic. But beyond that, my mom and I were besties in my world. The divorce was the best thing that happened to my relationship with my dad, as I was mostly ambivalent towards his presence and rules in our house of fun before that. I didn't really care for my grandparents (no offense, but I definitely did not get excited about hanging out with them). I did enjoy preschool when I got there, but I started later. My mom was so full of life and energy, she filled a million roles and stayed one of my closest friends through my life in various ways.

Chaya has a much broader attachment network. She banishes me from the house/room to play with her gramma. She gets upset if I don't take my "treadmill time" or "momma go downstairs" after weekend breakfasts, because that's her time with Daddy.

She digs her other grandparents a ton as well.




She loves preschool and hugs and trusts all the teachers there. It's really cool. I won't say it takes the pressure off of me. But it changes the dynamic. She'll have so many different people to love and trust in a different way than I did. And given my personality, I suspect Chaya and I will have more battles than my mom and I did (almost none). And I bet we're due for a serious Daddy phase soon.

No evaluation there, but just interesting. Again we are never our parents and our children are never ourselves. Perhaps it means that my physical limitations won't be as unfortunate, since Chaya will have plenty of people to have crazy-fun with.

And of course I love the little bugger and I'm so touched that she seems to like me as well as love me. Even when I'm boring. Even when I don't let her climb up and try to balance on my head for the fifth time.

And maybe - a gal can dream - there's some specialist out there who might at least give me a name or a something to take the edge off the bother and add some edge onto the pleasant. But if not, we trod on. Well into April and springing through spring! Break out the claritin, it's time for life to bloom!!

Acid Dropping as the Toddler Returns and Watches the Fastest Tracts.

I left my blog hanging from a cliff (and not one of those half masticated kid's Clif Bars that Chaya strews about like flower petals in a wedding aisle), missing my husband and child and speculating about the particular contours of my life and death with whatever Raynaud's associated nastiness a rheumatologist might discover. Then I was like "wait, break-time it's Mardi Gras and we've got a toddler preschool Valentine's Exchange and parade to do!"

And, as always, I'm still alive! And not currently living with any diagnoses except Raynaud's, odd-body-syndrome, and probably some kind of all purpose psychological label involving the words "neurotic" or "generalized anxiety"

Chaya and Andrew had a great time tromping around in the mountains. As I was not there Chaya was vergingly angelic on the plane ride. She was intimidated by the dog but also delighted. She tromped in snow. She took her naps and slept at night (or so Andrew thinks, but then again I've seen how much he can sleep through, so who knows what wild nonsense she got up to once he was in bed!) And she didn't universally reject me upon her return. In fact, little changed in our relationship, although I think maybe she and Andrew have a little more confidence with each other now. And no doubt Andrew is further convinced that I am either (1) making up some of the wearing joys of primary parenting, or (2) bringing out Chaya's most demanding and boisterous side. Guilty as charged I'm sure on the latter, but that is the world of primary parents. Really.

 And, after various spells of wallowing and Dr. Googling myself, I mellowed into a pretty jammin' routine of eating moderately, walking, wandering, and watching two of the millions of comic book movies I've missed in the intervening years since childbirth. The last film I watched in the theaters was Avengers 2 (which nearly triggered premature labor at the time). Then I visited my own parents, ate moderate and safe foods, and packed up some more of my stuff from the old house that my mom is just about to sell.

I also moved onto my first round of the sugar pill phase of my new birth control. Lo and behold, my body decided to menstruate (TMI, my toosh - you've been through oh so much of the nitty gritty, this barely scratches the surface). I surely thought it'd forgotten how to do that! Even Dr. Cho was selling birth control as a great option in terms of never having to have a period again (given my history). Ah well. This becomes challenging since Chaya has a magnetic attraction to maxi pads (stuffed animal diapers basically) and bandaids. We never have either readily available for use in the home, despite them typically being scattered every which way like tinsel on a tree. But it's still heartening to know my body occasionally does things it's "supposed to."

And so, things continue. Kids came back. We had a reunion with Chaya's besties from way back at a nice Mexican restaurant a week ago. I got a haircut this week. We live exciting and crazy lives!


Chaya's about to up her preschooling to twice a week. She enjoys it so much (and I have so many
darned appointments to keep up with, that it's becoming necessary at this point!) There was some confusion about which day and how to coordinate, but I finally just decided to drop her off today. I think they would take her every day if I weren't too dilatory about compensation.

And...

Last week I had my long awaited appointment with a rheumatologist. We're still waiting on bloodwork, but based on a physical exam and family history, she is skeptical that I have an autoimmune disorder. She investigated my hands for signs of "pitting" and ulcers (common with secondary Raynauds) and did a nailfold capilloscopy, which also suggested my capillaries were normal. She was bemused at a faint orangey hue, but finally speculated that it was likely something to do with eating a ton of carrots and squash (actually this is plausible based on a list of foods people might eat to acquire caratonemia  She thought my face had a redness but nothing malar (lupus butterfly rash).

I went through my long list of symptoms and she bandied them back at me:

1. Raynaud's, vasovagal syncope, flushing face and skin, peripheral neuropathy, benign palpitations... are all under the control of the autonomic nervous system. believes they're related. Didn't call it dysautonomia exactly, but suggested I may learn to control these parts of my body through a practice of biofeedback or meditative practices like Qi Gong. She said it would be interesting to see how longer term use of birth control might affect things. Boy is my life always "interesting," particularly to medical professionals.

2. Dry mouth. She agreed my mouth was dry and that there weren't really any medications to blame. But she also didn't think it showed signs of sjorngren's level of dryness or the associated damage.

3. Dry eyes. This one was an easy bandy since I have a family history of dry eye syndrome and have had LASIK. .

4. LPR (silent heartburn symptoms that include constant hoarseness, throat pain, lump in throat, difficulty eating, etc). She said that was fairly common among the population, and not a huge sign of autoimmune dismotility in and of itself. She recommended enzymes and dietary modifications. She also suggested going back on Claritin as allergies have some overlap.

5. Other stuff: hormones and thyroid and not her wheelhouse, but "interesting".

6. Aches and pains. Not joint or connective tissue related as much as sciatic or the like.

So, pending a blood test, I'm more or less back on my own for a bit. But I ain't done with the specialists here.

I am seriously considering consulting an accupuncturist who also offers private qi gong instruction, since I do know that she takes insurance and it has a decent track record of helping. It's amazing I've lived in Bellingham and Mt Vernon so much and yet never seen one at this point.

I am also still waiting on a neurology appointment in several more months, which may or may not be relevant (Raynaud's IS a neurovascular issue, and autonomic nervous system functions are neurological...)

And then there's the miserable reflux. I think I will try changing birth control next cycle, since this seemed to be contemporaneous, but I'm not sure if it will help. I may also consult an ENT or have other testing to see what the balance is between mechanics, hormones, allergies and whatnot.

LPR, if this is what it is, is a special form of reflux. It's harder to see the direct cause and effect, but I can tell that if I eat quite a few of my favorite things, or if I eat much at a time, OR if I eat anywhere near bedtime, it sucks. I get mucusey. I feel a little food creeping back up or just have a difficult time swallowing. My throat suddenly gets sore if I lean forward or backwards. And eventually it turns into post nasal drip. I have read some fairly credible consensus that this is triggered off by acid reflu aspirating up very fast and bringing pepcin (a digestive enzyme) into the nose/throat/larynx, and mouth. The reflux is probably due to a loose valve somewhere, but once it happens, it's a self-perpetuating cycle. Pepcin stokes the acid and feeds on acidic conditions. It slowly dies in alkaline environments.

That's part of why acid blockers are often useful BUT the really effective ones (PPIs) (1) have a crappy efficacy with LPR, (2) totally screw with the stomach's ability to absorb several vitamins and minerals. Huge risk of deficiencies and osteoperosis, which I'm already at risk for. And there's a dependency and rebound effect that makes it harder and harder to get off of them. It's still an important intervention but not one to be taken lightly.

I've also seen some peer reviewed studies that dietary interventions (Mediterranean diet and alkaline water) were technically more effective than PPI use. So while we wait to see how things pan out, I'm watching my diet again, at least as much as it is limiting me.

 It's really a bummer here. I finally manage to get out from the lode stone of being underweight. Break some of my orthorexic tendencies and get to a place where my body actually seems to do things like "respond to hormones". And now I can't eat much at once or much of anything without some serious punishment.

There are a handful of different "GERD/LPR Diets" out there. (GERD is the medical term gastroesomethingsucks reflux disorder - e.g. "frequent heartburn and other reflux issues"). Every case is idiosyncratic and every sufferer has different triggers. It's harder to figure those out with LPR, so it can be helpful to have a really minimal diet of generally safe foods and then slowly reintroduce other foods to get the trigger.

As I've said, there's credible research that a low acid diet might help to heal the acid damage of LPR, particularly. There are two major takes that approach it from this angle. One is called Dropping Acid, started by an ENT who pioneered a lot of research into Silent Reflux. The competing "low acid" version is called Acid Watchers, also concocted by an ENT several years later with a little updated research.

 They both have a "healing phase" in which the patient eats only foods above a PH of 5 (and avoids other known triggers) and then a phase in which you work things back in. They differ in the nitty gritty.

They're both very healthy diets, except that they may come a bit from the assumption that people with reflux could benefit from losing weight and probably were eating 3 bigger meals a day. Revolutionary to move up to a whole 6 times a day! Given how little I can eat at a time, that is NOT enough. In fact, many people I've spoken with feel that their difficulties eating have caused them to drop weight. And it's challenging to get enough food, given it all takes preparation time and money.

There's a third one that's particularly cultish, called Fast Tract Diet. This was developed by a microbiologist to treat something called SIBO, but he's expanded his opinion to credit heartburn with this as well. It's all a very complex algebraic take on the Low FODMAPS diet (on steroids). His theory is that it's all about how fermentable foods are. Food ferment in the stomach and that feeds SIBO, which in turn causes every kind of woe. Basically it includes a ton of common trigger foods and it low carb. People swear by it, but it scares me. Oatmeal and bananas are bad? Really?? In fact it's kind of nuts in terms of how little fruits/veggies/whole-grains one can have. Seriously, Wonder Bread is more highly recommended than oats. And it's super high fat.

There are also more generalized diets. The common sense stuff is semi-based in science, but not super well reviewed.

I'm loosely following the Acid Watcher Diet, but I think there's a dizzying degree of whooo in it.

Of course there may well be some underlying intolerance or allergy going on. I definitely have allergies generally. And there are connections. But of course I have no idea what they are and how they interact.

Or this. Because every support group for any medical condition has one of these (this is a poster who posts almost the identical comment on EVERY SINGLE post from a new user).

"Just a bit of information. Raynaud’s is often the first sign of an impending autoimmune disease invading your body. Yes, dress warmly and keep your core warm, but while you do that and live your life, leaky gut has done a job on you and invited disease to take hold. It might be lupus, Scleroderma, Sjogren’s, arthritis or a gut issue, but it will be something. I’m living the lack of knowledge...ha you have Raynaud’s so keep warm. Well I am now in possession of 5 autoimmune diseases. Read all you can because you can stop this in its tracks and just deal with Raynaud’s by removing all wheat, rye and barley from your diet. Are you celiac because that is one major way leaky gut gets started. Get tested because if you have it, so does your family and they too will have issues but they might be different from you and none of them could be gut related. Read...read. I like The Autoimmune Fix by Dr Tom Obryan and his site TheDr.com. Leaky gut comes from eating inflammatory foods and can only be fixed by removing all 100% of those foods and that’s not just bread and cookies, but hidden foods like soy sauce and bouillon, barley is beer. I can say this because I have done the research and I just want to let you know there is an answer. It’s not easy at first, but it’s really not easy battling sickness that takes your life away. Give it 3 weeks to see some beneficial change.

So, I totally disagree on so many counts, but actually some of my symptoms could indicate Celiac by modern research, so I may ask about that and if things don't clear up I may consider a FODMAP style phase to figure out if anything is triggering me.

In the meantime I'll be "doing the research" and/or staring at Facebook while trying to figure out what I can give to Chaya that she'll actually eat that WON'T be problematic when she then decides she'd rather feed me the rest of her meal.

Hell(th) nut: Plot Twists in Medical Mysteries and a Strange Return Home

And I return to the house with a child who happily joined the Play-Do table at preschool (after a morning of saying "no" and wanting to return to the crib). Parenting accomplished for at least the morning. 

Time to update the world on the exciting world of me oh my... It was a very exciting week in the endless health rollercoaster of Adellalandia. 

I used to be healthy! Really. I was in great shape. My health stats were all splendid. Feel a bit like a switch got flipped at some recent point and I'm one big Jenga tower absent a structural piece. Don't get me wrong: I'm still pretty lucky. I can run around the house for hours carrying my 33 pound writhing toddler, then let her climb on my head, before tumbling into some airplanes. But it is often a big limiting question-mark on my of my many challenges. 

This next month, even, Andrew and Chaya are going on a trip together without me. While in theory, I think this is a very good thing for daddy-daughter bonding etc, 

I guess I wasn't totally emotionally ready to be left behind. Sure travelling exhausts me and I'm always initially resistant, but over all I want to be there. This year, I just can't. Andrew asked what I was going to do with all my free time, and my first response was something like "let my guard down and spend the weekend feeling sorry for myself." 

No no, I'm sure I'll rally. I may do wild things like watch an entire movie, steam clean the bedroom, and ... more movies. But I'm still mad at my body right now. And I feel bit of a quiet fear that I'll become less and less able over time. That Chaya may not remember her wild and athletic mommy. So that alone is motivating me to cross my t's and dot my i's and see if I can get some kind of equilibrium going on. 

First things first: I now have hormones coursing through my body. Last week, I met with my reproductive endocrinologist. Amazingly she remembered me in impressive detail (the boom bust of ovarian responsiveness leaves an impression I guess and she continued to marvel that we didn't end up with multiples worthy of a reality tv show). She laughed when I said I hadn't started birth control yet, but was  taking a whole standard dose of estradiol. Apparently this is akin to a dropper in the empty ocean for me. Nothing much I said surprised her, except when I asked about my flaming red ear. 

After some discussion it came down to this: I could go on hormonal replacement therapy with very high doses of dermal and suppository hormones, possibly provoke monthly periods, likely not start ovulating again but still have to be careful because HRT and pregnancy do not mix; OR I could immediately try to get pregnant again using the full arsenal of ART (with no guarantees of last time's luck and definitely a big risk of multiples given how I reacted last time); OR I could take birth control the rest of my pre-menopausal life and call it good. 

Given Chaya's tendency to sob whenever I touch another baby, and her many sneak attacks on Daddy's reproductive organs I can kind of guess that Chaya is gonna be ok with being an only child.

 It was a bit of a mental adjustment for me. We'd talked often about expanding our little family "god willing" (in other words, if it happened, it happened, but that I couldn't go through the full ovulation induction carousel with a toddler. I suspected it might not be possible but I liked the idea of keeping the option open. Nonetheless, birth control is the best option and considering the hormonal craziness that pregnancy, breastfeeding and weaning wreaked on my body, I'm not sure I could survive a second go around of that anyways. 

It's a little early to say much about the pill I'm on. I guess it can take some time to find the right match. It also takes about 3 months to really know how it will sit with somebody. I may be a little less prone to overheating so far. Which is good because...

All that eczema stuff? After 3+ months of doing my best with "hand eczema" waiting for a dermatologist to confirm and help already, I finally had my appointment. The dermotologist took one look and says "this is because of your Raynaud's. You need to see a rheumatologist or a vascular specialist. I don't think you need a referral with our insurance. Take care."

No no in fairness, she prescribed a steroid of questionable efficacy (I only used it a couple of times and it burned)

Seemed odd given I've had what I've presumed to be Raynaud's for years with nothing remotely resembling "deep pain and itching upon getting the slightest bit warm."

For the uninitiated, Raynaud's is a condition in which smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas and cause vasospasm. It's best known for a finger or toe or several appendages suddenly turning white, puckering, and losing sensation. Then it throbs. In general, there's some association with just crap-ass circulation to hands and feet, so hands and feet tend to be cold and often kind of purpley or blue. 

It all just seemed so weird. I've had "Rays" as long as I can remember, and it's certainly been "worse" before. When I was a teenager, I remember turning blue up my arms on a cool day in Morocco. My travel companion was quite unnerved but it appealed to some emo part of me. In law school in particular, I had the dreaded white finger of doom on a fairly frequent basis.

I've had one pale finger this year. Otherwise, not much. My hands and feet are always cold, sure. I can't sleep most nights without electric slippers. 

But with the rest of my body overheating like crazy, I guess I didn't mind or notice any cold hands. And as soon as this whole rashy discomfort broke out over my body, my hands would just kind of inflame on the slightest provocation. I still wake up in the middle of the night with my entire body radiating heat.

It being late Friday afternoon and all the possible medical professionals who might have helped no longer being in the office, I did some research of my own (do your research SHEEPLE!!!) I joined a Facebook support group and posted pictures of my hands with a WTF?

Turns out there's something called chill blains (or oh so pernicious pernio). These delightfully named medieval scourges purportedly happen a lot to people with Raynaud's - horrible painful inflammation and cracking and blistering that happens when skin goes from cold to warm too quickly.

They don't look too bad when my skin has some normal temperatures going on, but they're disturbingly purple when my hands are cold, and nasty and red when my hands are warm

I could well also have a localized form of scleroderma, based on some pictures (the autoimmune artist formerly known as CREST) - or any variety of fun autoimmune disorders that wouldn't necessarily have shown up with the autoimmune testing I already have had done - but we'll stay with the chill blains and being a big fat pain for now.

I still do have mild dermatitis. Or at least scratchy and dry skin. And in some ways the treatments are similar: avoid extreme temperatures, moisturize frequently, reduce stress, don't scratch, keep a watch for infections.

Interestingly, Raynaud's is actually a bigger problem when it's cool and damp than when strictly gelid. Eczema often improves with a more humid environment, but not so much the risk of chilblains. And wet wraps are great for bad flares of dermatitis but probably increase the risk if Raynaud's flare up and chilblains. Whoops. All those lukewarm baths I was taking in a cold bathroom to simultaneously cool down my flushed face and help my itchy skin probably weren't helping, given the purpleish hue they always provoked.

Chilblains burn something fierce and get worse as the skin gets warm. My natural reaction to burning is to try to numb and ice the inflammation. Many days of running my hands under cold water or straight out icing. At a certain point I was getting these nasty red spots on my fingertips exactly where I'd been gripping an ice pack to sooth myself.

Anyways, my hands still look pretty unhappy, but I've been working on keeping them warm and limiting temperature fluctuations. I'm hoping at least this knowledge can help mitigate future outbursts while I wait my next interminable period for a rheumatologist to see me. I'd say things are moderately improving since last week, but the flare ups were always a bit cyclical, so we'll see.

Although I am probably a Primary Raynaud's sufferer (as in I've had it forever and probably it isn't just a side effect of something else), there's also a chance that a scarier autoimmune disease lingers undiagnosed. Let the clock start again on waiting for answers to that one. It still confuses me that I've had so many bad spells of these this year over other times when the Raynaud's was more active or severe.

In a sense, it is a weird relief that all this misery might actually be something I have had forever. If it makes any sense, I still blame myself for the wonky hormones. I don't know that this is fair, because somewhere in there is a genetic and physiological component to how my brain and body reacted, but the combination of over-exercising/under-eating for so many years and then messing with those hormones to give birth/breastfeed... seems like a no-brainer that I broke myself on those grounds.

But Raynaud's? Well dude it's crappy as all heck, but it's just part of who I am. Hi I'm Adella. I'm a vegetarian, I can't make a decision to save my life, and my hands don't really get much blood to them!

I imagine I've had chillblains before and written them off as dermatitis in the past. If there's a quiet auto-immune issue that didn't make itself known until now, I've probably had that since childhood too, since Raynaud's can predate AI symptoms by 20 years. Naturally I've been laying my bets for what I could have or not. I vote for Lupus in homage to Dr House, M.D. Whatever it is, it is nice to have a name to put to a constellation of annoyances that generally fall under "wonky body syndrome." It's fascinating to learn more from other people with Raynaud's. 

Apparently that bizarre flaming ear thing is not unique in the Raynaud's world. Or the constant fluctuating between too hot and too cold in the vulnerable places. Some even mention really random symptoms I'd never thought of before. Including some tingling and other scary sounding symptoms that I'm still getting checked out. 

 I'll be keeping toasty in style and hoping flame face and flame ear will subside as I make the effort to stay generally warmer.

In the meantime, I didn't have enough gloves in my menagerie, so let's add some toastie hand warmers for typing, and a couple of pairs of refrigerator and freezer gloves to the mix. 

Hand it to me! Going Through Changes and Waving a Gloved Hello t the New Year

We are now barreling through the Holidaze. Thanksgiving survived and thrived.

 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. 

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?

 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!