Wednesday, August 01, 2018

When NOT to Tell Someone You're Doing "Well"


The year I turned 40 I was diagnosed with Hashimoto's disease. Oh My God!! you say, are you okay?!

I'm so okay I forgot to mention it to some members of my family.

Hashimoto's is an autoimmune disorder in which your body attacks your thyroid, reducing the amount of hormone produced naturally by the body. The treatment? Take safe and common hormone replacements to bring the body into balance. But also see your endocrinologist often for a simple blood test in which your hormone levels are monitored so your doctor can determine when you need to step up the hormone replacement dosages, because your body keeps attacking your thyroid until you need full replacement hormones.

For six years I have been seeing my endocrinologist, and once had him bump up my dosage. And then, two years ago happened.

In fall of 2016 at my regular check-up, I reported that I was feeling tired and run-down. I could nap every day, was tired every afternoon, stopped working out because I couldn't get myself up at 5 a.m. anymore to fit it into my day. My chart indicated that I had gained 7 lbs in one year, probably a combination of fewer workouts and more sleeping. But, my dad had also just passed away, which added a new level of stress to life, making all of the above explainable as well.

They drew blood for the blood test, and a week letter I got a letter that my levels were within normal range, and that based on my report the doctor did not see a reason to make an adjustment, see you next year.

I found myself back the following November, giving the same report: I'm tired. I sleep a lot and could sleep more. I don't have the energy to work out. And my hair was falling out in copious amounts. I could see my scalp through my hair and it was devastating. Others said they couldn't tell, but I could and it bothered me.

I had also read the book "Hashimoto's Protocol" by Izabella Wentz, a pharmacist who self-diagnosed her own Hashimoto's in her late 20's. When she reported to doctors that she had no energy she was told that "people slow down as they age." She retorted, "Really?! 29-year-old's slow down?"

This time I had the blood draw done in advance so we could discuss the results at the appointment. But the doctor (and truthfully, I) forgot that I'd done that so we didn't check the results. The doctor walked into the room and said, "Hi how are you?" To which I replied, "Well." Because, as the CEO of a company I used to work at says, replying by saying "good" is not proper grammar. (I partially blame him for my two-year mistreatment.)

I then proceed to tell the doctor of my woes. I'm not sleeping well and can't sleep enough. My hair is falling out. I lack the motivation to work out. My thinking is fuzzy. I am sluggish and can tell I've gained weight. This year's report? Another 11 lbs, 18 lbs in total in two years. I have never gained this kind of weight in my life in such a short period of time. Does this sound like me? No.

He informs me that hair loss is not a symptom of Hashimoto's, nor is the kind of insomnia that I experience.

Really? It's all over in the support groups, the book I'd read, anecdotal stories others with the condition had told me. Well, he informed me, RESEARCH indicated that it wasn't, despite all of that "other" evidence.

He does a blood draw, because I stupidly forgot I'd been there the week before for a blood draw (it was an early morning appointment), and a week later I get the same form letter: levels are within range, no change needed.

Did he not hear a word I said?

Turns out, he didn't. I called the clinic several times and when I didn't get a return phone call I drove down unannounced and had a confrontational face-to-face with him about it, both about the missed blood test and my oral report which he ignored. He finally agreed to make a small adjustment to my dosage, and within a week I felt improved energy.

After this experience I changed from an endocrinologist to a whole health doctor, who informed me that my endocrinologist never tested my T3 hormone level, a key indicator in treating Hashimoto's. I had read in Izabella Wentz's book that this was a common oversight—most endocrinologist's only test the T4 hormone.

My new physician and I also got a chance to review my endocrinologist's notes from the last two visits. In both reports, he wrote "Patient reports feeling well." He noted the weight gain, but not a single word about how I was actually feeling.

I realized that my very automatic greeting of  "well" after hearing the words "How are you?" is what he wrote in his report, and he hadn't listened to a single word I said.

So...word to the wise: if you are talking to your doctor, make sure s/he is clear if what you are saying is a GREETING or a REPORT. There is a real difference.

How am I doing now?

Great. My new doctor, Dr. Richard Sinda, is fantastic. I feel listened to. I am feeling better. He and I review my results together, because he knows I'm a data geek and like data, even though half of it goes over my head. He adjusted my hormone replacement dosage and started a new one because, now that we're testing my T3 level, we learned that it was also low and needed support. I also started a bunch of other supplements and vitamins to improve my overall health. As he says, "I don't want to know how much Vitamin C a human needs to prevent scurvy, I want to know how much Vitamin C a person needs to be in optimal health. There is a different between a lack of sickness and optimal health."

As for the weight, well, I now have the daunting task of losing it. I know what I need to do, I just need to do it. Move more, eat less (and better food choices). Hopefully it will come off as quickly as it went on, I'm giving me two years because that's the healthy way to do it.

So that's the latest. For anyone who is diagnosed with Hashimoto's, I highly recommend Izabella Wentz's book. I did not follow the protocols she recommends, though I am sure that if I did the weight would just fall off. Her dietary changes and supplements were a bit daunting and seemed overwhelming to implement, which is why I sought a whole health doctor who helped me implement the ones that made sense for me.

One more lesson learned that the person who can best advocate for your health is YOU. My health languished for two years; it could have been longer had I continued with my same doctor and hadn't advocated for myself. I'm glad I finally made the change needed for my own health.

Sunday, June 03, 2018

"Is It Gone?"

Yesterday afternoon the girls and I had an enjoyable time visiting the Edina Art Fair. This is a fair that closes streets down around us and makes it a pain in the ass to get around. For us, it's a beautiful event that's just 3 short blocks away. We can walk down when we want, go back home, think about a purchase and then go back and buy it.

Marissa, Lindsey and I walked down in a drizzling rain yesterday, which, for us, is perfect, as it keeps the crowds down so we can browse. Lindsey and I had visited the day before and she had her eye on a ring that she really liked. After purchasing that and doing a little more shopping, we decided to go to AgraCulture for lunch, a wonderful little spot that has many gluten-free options and excellent food.

Lindsey's and Marissa's rings from the Edina Art Fair.
Afterward, we kept shopping and went back to one place where we had been looking earlier. While there, Marissa and I noticed that Lindsey had a piece of lettuce wrapped around her retainer. It was just a little spot of green. We pointed it out to her and she went out of the booth to take care of it.

She came back and asked, "Is it gone?" and smiled. The lettuce was now spread across half her tooth, and she had a very green smile. Marissa and I both doubled over in laughter, because it most definitely was NOT gone. We laughed so hard for so long that everyone in the booth started smiling and laughing along, including Lindsey.

Shortly after we walked home, and the image of Lindsey asking "Is it gone?" and then smiling with a green smile kept popping into my head, and I would giggle. The girls would giggle too, and then we would have to stop because we were laughing so hard.

There is much more to this story, from the kind artist who "gifted" additional rings to the girls when they both selected the same one, to the walk home, but overall, it was such a great time together, worthy of capturing in a post for future smiles.


Wednesday, May 23, 2018

An Observation, by Marissa

One morning I heard a little commotion coming from the kitchen, the sound of many small objects hitting the floor (I assumed it was cereal), and shortly after the sound of it all being cleaned up.

I found Marissa in the kitchen with a look of relief on her face.

"Mom!" she says, "I just realized why you and Dad yelled at us when we were younger."

Hmmm....this seems like an odd leap.

So she explained.

For a little bit of background, Marissa takes an assortment of supplements (my favorite is the multivitamin for "healthy hair and nails"). Every Monday morning she fills her pill case with that week's doses and takes them every day.

She was filling her pill case for the week when an entire bottle of vitamins spilled, scattering little tiny pills all over the floor. Our dog, Beauty, came over to investigate. Thankfully she's been taught to not eat anything off the floor until she gets permission. She usually waits, unless it's an especially tasty-smelling piece of meat. So Marissa told her "no," and then was able to pick up all the pills before Beauty got to any of them.

Can you imagine if our dog had eaten a handful of random vitamins and supplements? I'd be using Dr. Google to try to figure out which ones are harmful or not, and probably taking her to the vet for a second opinion.

"Now I know that you and dad yelled at us, because you wanted to keep us safe," Marissa says. "You didn't want us to do things that would hurt us."

She and I recounted the cactus-touching event, when both she and Lindsey grabbed cacti on display at the local nursery. I spent the afternoon tweezing tiny little cactus needles out of both of their palms. (I believe that story is on this blog somewhere.)

Both girls also had to learn not to touch a hot stove by touching a hot stove. A couple of blisters later and neither of them ever did it again. After that, instructions like "wear your helmet" and "use a lifejacket when on a boat" went over much easier and with less argument.

I liked how Marissa made the connection between what had happened with the pills and Beauty and how her parents try to keep her safe. Now let's hope that lesson sticks when it comes to the really big lessons.

Wednesday, April 25, 2018

Marissa's Bionic Teeth

Marissa had chronic ear infections the first year of her life. Her nose was constantly running, her ears always aching, and she was a downright miserable kid. When she turned one she got ear tubes, which drained the nasty infectious stuff so at least she could sleep at night, but ironically it didn't prevent the infections. (I will not describe the scene to you of waking her up many mornings with ear drainage smeared across her face, her pillow, and making her hair stick up. Okay, I guess I kinda just did. Plus...it smelled and she needed many, many baths. Her sheets were washed nightly.)

This pattern continued despite the ear tubes. Her nose ran constantly. We stopped wiping it all the time and considered the initial layer a protective coating that kept her skin from rubbing off with every wipe of a tissue. None of the other parents at daycare would set up play dates with her, they thought she was always sick. And, she was.

She would get a cold which would turn into an infection. We would go to the doctor who would prescribe antibiotics. It would clear up eventually, but the minute the antibiotics stopped, it started all over again. She needed stronger and stronger antibiotics, which also did a number on her tummy. Poor kid.

We finally sought the opinion of her ENT who suggested that removing her adenoids may help. He had barely said the words and we scheduled the surgery. He wanted to do one more round of antibiotics "just to see if it would clear up," but she'd practically been on them her entire life, what would one more week do? We were tired and frustrated of having a cranky, unhealthy kid.

Around her second birthday she had her adenoids removed; the change was immediate and dramatic. By the evening of the surgery, she was smiley and playful. I didn't want to put her to bed when it was bedtime, it was such a treat to see her so happy. In the morning she woke up singing! Or babbling. Or something other than the howl we heard most mornings. Looking back, it must've been like waking up with a full-on sinus infection every single morning of her life. Such joy she must have felt awaking without a headache and a clogged skull.

Her nose cleared up, her ears cleared up, and any cold she caught after that stayed exactly that: a cold. No more drainage, no more nastiness, and we had a super happy baby. Yeay!

She grew and grew, and at age 6 began losing her teeth. One of the first teeth she lost was replaced with a tooth of the most unusual yellow, almost chalky white around the edges. Her dentist murmured something about "malformed enamel," and that was that.

Then another tooth came up with an interesting pattern of clear and white enamel. And another. We changed to a pediatric dentist who first used the word "hyoplastic enamel." Thus began our education.

Hypoplastic enamel is enamel that malformed while the adult teeth were maturing in her head during the first years of life. I learned a lot about tooth maturation. Ever see the skull of a child with the dental cavities exposed? It's creepy. I can see where the director got the idea for the creature's mouth hole in "Alien." You are born with adult teeth buds in your skull, and during your first few years of life they grow into the adult teeth that eventually push down into your jawbone once your head is big enough for the fully grown teeth. It's quite an extraordinary feat of human anatomy.

A child's skull with dental sinuses exposed. Creepy!
Especially that canine tooth way up there.
So why do some people develop hypoplastic enamel? Recent studies have pointed to chronic antibiotic use in infanthood as a probable cause.

Let me say that again: Chronic. Antibiotic use. In babies.

My death stare. Is it as intimidating as my kids say it is?
At age 12, Marissa already has 3 fillings, one crown and a capped baby tooth. The baby molar needed a cap because the enamel all around the edge of her gums literally disintegrated. It was like a cavity encircling her tooth; there was no way to "fill" it, and no point in anything more than a cap since it was a baby tooth and was going to fall out anyway. She recently lost that tooth, and we joked about her "cybergenetic" or "bionic" tooth.

Marissa's "bionic" baby molar.
When she had the crown done recently, the dentist told me that as she began to file down the existing tooth it literally crumbled under the slightest pressure of her tool. Her current crown will need to be replaced when she's 18, and eventually she will probably need an implanted tooth because the dentist isn't confident that the root of the tooth can hold.

Remember my last blog post, about my phobia of bad teeth? Marissa is going to face a lifetime of expensive dental work, filling, repairing and replacing her teeth through the years.

I'm angry that her permanent teeth were permanently ruined. all because she had a runny nose when she was a baby. Had we known then what we know now we would have insisted on more aggressive intervention earlier to reduce our antibiotic use.

It's Not Dental Phobia


I have a permanent retainer behind my bottom teeth, and I loathe how it captures food and I can't get it out. I brush, floss, and have even bought cheap dental tools to pick at this retainer.

Then I got the best advice ever — a friend of mine who has the same issue has her teeth cleaned every 4 months. Sure, you pay for an extra cleaning a year out of your own pocket, but it's all of $85 and it's worth it to me.

Yesterday was my cleaning, and I got into an interesting conversation with the hygienist. Or, I should say, she had a lot of interesting thoughts that I agreed with by making odd sounds with my mouth wide open.

She talked about seeing patients who finally came in for a cleaning for the first time in 15 or 20 years. They have such dental phobia that they never see a dentist. Some have no issues at all, just really, really dirty teeth, while others end up with a mouthful of cavities and future crowns and bridges.

Upon thinking about this, I've determined that I don't have dental phobia, I have a fear of bad teeth. Our teeth are made of bone; once they're gone, there is no substance in the world as strong that will replace them. Crowns need to be replaced, bridges fall apart. Our natural teeth are the authentic manufacturer-installed parts; once they are replaced, the fit isn't quite as tight, the holding as deep or strong.

I have dreams (nightmares, really) where my teeth suddenly start falling out of my mouth at random and I am devastated. I worry that my teeth will start wiggling and coming out like baby teeth. I fear the day that I'm told I need a crown, because I loathe the idea of filing down two perfectly good teeth just to put a false one between them.

And so I go to the dentist often not because I'm afraid of the dentist, I'm afraid of bad teeth.

It's been working out well. About a year ago my dentist noticed that one of my molars that's had a filling in it since childhood was starting to crack. He recommended that we remove the old silver filling and put in a new one made with material that would flow down into the crack and seal it, hopefully saving the tooth from cracking further. It's been a year now, so far so good.

Every dentist I've ever had as an adult has commented on how good the fillings I had put in as a child are. Thank you, Dr. Nyder, our next-door-neighbor and dentist, for your awesome work 40+ years ago!

Well now, this was a completely random post, I can't believe you made it to the end. Thanks for reading my rambling thoughts. It's leading me to another post about my daughter Marissa's dental woes, stay tuned for that if you actually read this one.

Monday, April 02, 2018

Nostalgic for Jesus Christ Superstar

This is the album cover that was in our cabinet under our record player.
A live performance of "Jesus Christ Superstar" played on NBC last night, and I was the only one in our household interested in watching it. Lindsey watched the first five minutes, declared it "noise" and went upstairs to watch a movie on her kindle in her room.

Not that I'm religious, I just really like a good rock opera. Actually, I think JCS is the only rock opera I know. There is no dialog that is not set to music, and the whole thing is all electric guitars, drums and screaming solos, I'm pretty sure that's the definition of a rock opera.

I first got to know Jesus Christ Superstar as a kid. It came out as a record in 1970, and my parents had the album. It was a two-album set, with sides 1 and 4 on one record, 2 and 3 on the other. Our record player let you stack up to two records and it would play two sides one after another, and then you had to flip the records and re-set them to play sides 3 and 4. I still remember the anticipation of hearing the second record drop, the click of the needle picking up and then the scratch as the needle hit the starting groove and began to play. I would sit with the lyrics, which were written like a script, and study the words as it played.

Original performers in the 1970 Jesus Christ Superstar album.
The original album featured Murray Head as Judas and Ian Gillan as Jesus. Ian Gillan was the lead singer for Deep Purple, and later joined Black Sabbath. You can just imagine the initial recording, right? Literally screaming vocals, funky guitar rifts, slap bass solos.


The live performance last night maintained much of the original rock performance, but updated with today's vocal talents and instrumentation. I've only ever listened to the music, never watched a performance of it, and it was only last night that I realized that "Jesus Christ Superstar" is not about Jesus, it's about Judas. Judas has more solos and attention focused on his very human angst at not wanting but needing to betray Jesus.  

Brandon Victor Dixon as Judas in NBC's "Jesus Christ Superstar." He already killed Alex Hamilton as Aaron Burr in "Hamltion," betraying Jesus was next on his to-do list.
In Judas' final solo, he has ascended to heaven and is accompanied by angels. Dante Alighieri would not have agreed with this idea, as he put Judas in the final circle of hell in his epic poem "Inferno." But in this interpretation, Judas did a necessary deed to make a martyr of Jesus, and his payment is ascension to heaven.

I knew every word and completely enjoyed this interpretation of this classic. I thought Ben Daniels, who played Pontius Pilate, was weak on his final proclamation sentencing Jesus to death, and Alice Cooper was not the energetic King Herod as he should have been, but he did add entertainment value.

Cast and costuming of the 2018 NBC live performance of "Jesus Christ Superstar."
Of course, I smiled thinking that Paul Gilles was a huge fan of Alice Cooper, Deep Purple AND Black Sabbath. I think he would have cringed seeing the great Alice Cooper in this diminished role. But perhaps not, maybe he would be happy to hear that some of the classic rock sound that he loved is being embraced by a new generation. I know I did.

Saturday, March 24, 2018

So...What's Online School Like?

Lindsey and her dad configuring her new laptop for online school (Nov 2017).
When people hear that Lindsey is going to an online high school, their first question is invariably, "What's it like?"

It is really, really cool. And challenging. And not lonely.

From an academic standpoint, because there isn't class time where students are expected to work on practice examples or projects, there is a lot of written work. For all of her classes, Lindsey needs to turn in a portfolio of sample work, showing that she has grasped whatever concept is being taught, be it sample math problems, writing samples, a short essay proving understanding of a historical event.

She has lots of online quizzes, some only as much as 3 questions, to test students' understanding of a concept. She takes great satisfaction in taking those quizzes, clicking "Submit" and then seeing her score instantly. She can see which ones she got wrong and what the right answer would have been, which, of course, bothers her greatly so she always looks it up to see why she got it wrong.

She has live lessons, usually one or two per day, where she needs to be logged in at a specific time for a lesson. It works a lot like a webinar, where the teacher often has a presentation up on the screen, and all the students can respond via a live chat. The teacher will have her audio turned on and all the students muted. This is the most entertaining part of her education.

Lindsey usually loves these live lessons, because she enjoys the interaction between students and the teacher. After a lesson she'll say something like, "Ben interrupts a lot," or "Alison is really chatty, she is constantly talking." Some of the kids in the class are on Snapchat together, and they'll snap to each other during the class, which is the online equivalent of passing notes. Lindsey only knows this because they'll accidentally comment on the live lesson chat about what the other person sent them (the equivalent of dropping the note between desks).

For Spanish class, she has to record herself speaking Spanish vocabulary and submit that recording to the teacher and it is graded on her fluency. In the live lessons they spend time learning about the culture of various Hispanic countries. For one live lesson, the teacher did a live stream of herself making churros in her kitchen, and during the cooking lesson they talked about the cuisine of various countries. Lindsey was really craving a snack after that one.

During one memorable math lesson, the teacher had asked students what the next step was in solving a quadratic equation. Lindsey started typing, then backspaced, then started typing, backspaced, and so on. In the meantime, on the chat screen everyone can see "Lindsey is typing..." for a pretty long time. Finally the teacher said, "I get the impression Lindsey is trying to say something." Lindsey finally hit "enter" on her answer and posted it. She got a few LOLs from other classmates for that one.

Her school has tons of clubs, of which she's not yet gotten involved. They have debate, Photography Club (which she wants to join eventually), Science Club, Musical Club and many others. They have field trips that are all over the state, and the high schoolers have a prom in a city centrally located in the state. Lindsey is considering going.

How you often find Lindsey working: on the couch with the dog on her lap.
Here's the cool thing about this: I suspect that there are many special education students in her classes and they are no different from anyone else. I am seeing that most of the students in her school live in small towns in outstate Minnesota. I suspect these are students for which their local public high school could not make accommodations for them, and their next best solution was online school.

Students are not judged for their appearance or their fashion. If they have difficulty speaking no one knows it, and students are more than capable of expressing themselves through the typed word. No one needs special accommodations for equipment, wheelchairs, tube feedings, etc. because those things happen off line. I can imagine that for some kids, an online education is ideal.

Lindsey is staying connected to her friends from Minneapolis schools on weekends, meeting for lunches and coffees, going to movies together and hanging out. Through her friends we are learning of more budget cuts at the public school, messy class schedules and overcrowded classrooms. It makes me sad to hear of the state of our local high school. I know we made the right decision to search out another education option for her.

Friday, March 02, 2018

What I've Learned in 2018 (So Far)

It's been nearly two months since I hung up my corporate hat and put my parent hat on full time. What have I learned about life so far?

I've learned that my children are complicated people. I've listened to more stories of lunch time comedy and recess shenanigans in the past 2 months than I've heard in the past 5 years. Our girls have ideas, dreams, imaginations so strong, and random thoughts that are unlike anyone else's. It is truly a gift to be able to spend as much time with them as I am.
Marissa's best 80's ponytail.
Which she found hilarious.


Lindsey's favorite pasttime: reading voraciously with Beauty beside her.
My daughter's requests for a "big breakfast" on Sunday mornings is more-often-than-not met with a "yes" instead of a "no." Our version of a "big breakfast" is bacon, pancakes or waffles, scrambled eggs, all homemade, of course. It takes so little to make her happy, why would I not when I have the time and the energy?

Delicious gluten-free pancakes, after tweaking the recipe for two months.

I've seen that anxiety is a mangy beast that has one of my kids in its maw tightly, more tightly than I realized. After two months I feel like, perhaps, we are starting on a path to lightness. But no, I won't say that yet, maybe it's just another good spell that will be broken by another awful terrible no-good very bad day. And so I will continue to question, to pester, and to be there for her.

I've learned that I need the gratification of actually seeing things get clean when I clean them. This means there is no sweeping of floors once a week "just because," or dusting of mantels before they collect dust. I want to see that dust FLY, man, so it needs to accumulate good before I get after it.

And I've learned that my husband, the ultimate neat-nick, doesn't mind (or at least knows not to say it if he does) if the house isn't quite up to his standards. He is a more relaxed person for not having to do laundry on weekends and wash dishes every night. Not that I wash dishes every night either — we just leave them until the next morning because time together is precious and I'll have time in the morning to do them when everyone's gone off to work and school.

We've all learned that we used to spend a ridiculous amount of money on take-out food. I never quite understood before how our family could spend so much on "dining out," yet we never went to a restaurant. Bringing home "dinner in a bag" from Chipotle one night and Noodles & Co the next, and now I get where that money was going. That money is no longer flying out the door, and suddenly we can actually go out as a family to a sit-down restaurant every once in a while, despite my lack of income.

I have time to reflect and write, take photographs and exercise, all of which makes me a better person, more patient and confident at the same time. We are a better family for the change, and for that I am infinitely grateful.