Tidbits

I miss writing.  I am not sure how on earth I can fit it in.  Days blur by.  We homeschool.  We cook and clean.  We tend Grandpa.  We deal with the forest and it's surprises.  I try "to Art" (as my secret brain calls it), but am usually too tired.  So, blog-schmog.

But there are a few things happening that should really be recorded.

Jonah has begun reading.  Really, really reading.  Last year at this time he was agonizing through, "Pat can tap the map.  Tap, Pat, tap!"  One year later, and he is reading a 5th grade chapter book called  Because of Winn-Dixie (which he prounounces WINN-dixie, like Windex).  It is still a struggle.  He still gets stuck on words with b's and d's (bdbdbdbdbdb...wouldn't you?), and we bumble along together slowly, but HE chose the book, and he chooses it again and again every day at reading time.  And he choses every day to try, very, very hard.  I am in awe of him.  And because he loves being read to, he pays me for “extra chapters” in the books I read aloud to him, by reading TO ME for five extra minutes per mom-read chapter.  Deliciously, the author we are currently reading is the master of chapter cliff hangers, always leaving him wanting.

Tessa has begun high school.  It has been a brutal transition.  Tessa was a "casual" student in middle school, not worried or terribly serious.  Very chill.  But she is our first child to hold any interest in College, with its high degree of scholarly expectation.  Her online high school is full of teachers to hold her accountable that don't share her DNA.  She is newly motivated to succeed, and has already been heard to say, "But I'm ALMOST down to a B!!!"  It's uncharted territory for me as a parent.

Ellie is transitioning.  Adulthood is around the very near corner, and she is making plans.  She talks about moving out, and job plans.  She got her covid-belated driver's license today. She suddenly cares about school.  I hear the rustling from within her cocoon.

Adam is thriving in Utah.  He is learning to balance life.  Adam never learned to "hang out with friends" until the last two months of his senior year.  While the sudden joy of that discovery was really a relief to me (isolated and introverted teenagers worry mamas), there was a learning curve that took it's toll on his savings.  He has struck a lovely balance now between work and play, and is expanding his social circle, which was tiny for too long.  He has found a real  love-of-learning about all things Viking, which has expanded to history, archeology, ancient languages and even his own genealogy.  It's a glorious thing to watch, and I have been learning along side him so that I can understand all that he is absorbing.  This week I found myself touring an online Norwegian Viking museum, and attempting tablet weaving.  I failed, but I will keep trying.  I have a goal to make Adam a gift for Christmas; a woven Viking belt, a replica of the one found on the Oseberg Burial Ship.  Yep, I'm geeking out.

Ethan's not very vocal about his world, but work seems good, and he is coping well with lame car disappointments.  Between work and his own personal study, he has piled more skills onto his already broad knowledge of all things mechanical and electrical.  I'm so proud of him.

The sea-sickness Guy was suffering from the wildly rolling waves of his new principal job seems to be subsiding.  He is learning which wheels are truly in need of aid, and which will continue to squeak unappreciative to any amount of oil given.  We are finding a rhythm, which includes some later nights, and my learning an all-new jargon.  There should be an "Orientation for Spouses of New Admins", including a dictionary, program flow charts, and a little training on grief counseling.  The first two months were very hard.  Hard, plus covid.  Everybody is mad at school administrators, as though they knew this was coming and hadn't bothered to plan for it.  "Fair" has lost all meaning in a world where there simply are not answers, where need and demand outnumber available manhours threefold, and where people are screaming to get their never-again "normal" back, and they are screaming it at YOU.  Try stepping into that chaos on your first day.  Hard.  Really hard.

One more thing... I found a new doctor.  It's just the very beginning of what will likely become a long and difficult process.  But I am hopeful that by this time next year, I will show as much improvement in my health as Jonah has in his reading. 

Oh!  And Natalie lost her first two teeth, and one more is starting the dangle-dance.  There is a comfortable, if not slightly sad, predictability in that little detail.  I don't know what the future holds, but I do know that tooth isn't going to be there come Thanksgiving.  

Finding Love

I don’t know what it is, but I keep seeing hearts lately - heart shaped puddles, wood grain, leaves - little love notes everywhere. Maybe they’ve always been there. Maybe I’m just finally noticing. 

*****

Since Hashimoto’s moved in with me in the fall, I’ve been learning to let a lot go -the house, my schedule, my expectations- and for the first time I have begun to focus less on my character flaws, feel a little less guilt, and appreciate more what I am able to do while focusing less on what I’m not.  Finding a lil' self love.

But I’ve also had to face my failures and faults in a new way. At my church, I serve in the Young Woman’s organization. It’s a busy job, and I truly love it, but it has also provided me with the challenging opportunity to see my weaknesses through the eyes of others.  Just when I have been working to forgive myself for my many failings, to be patient with this disease and all it is taking from me, I’m often being handed a mirror at my least lovely moments. It’s been humbling. 

But the other day a woman on the autoimmune page I follow posted about her life.  She was just barely diagnosed, and feeling so sad and guilty about not being enough for her children, not being able to tend to her life as before.  I wrote a note of encouragement to her. After I read it back to myself, I realized I needed these words as well...

“Sweet, sweet, darling mama. You’re going to be okay. This is hard, no doubt about it. But you can do it.  Don’t  feel guilty for putting yourself first, and taking care of yourself. Try not to use the words like “failure”, or “terrible mom” when describing yourself, because your heart is listening. 

If your sweetest, dearest friend was going through this right now, how would you talk to her? What words would you use? Would you give her permission to be sad? Would you tell her she just got this diagnosis, and it will take time to adjust? Would you tell her that she has to give the medicine time to work, the information time to sink in?  Would you tell her that she is strong, and good, and capable, and that she will get through this?

I promise you will have better days. You will have bad ones too, but not all of them will be bad. One of the things that Hashimoto’s has given me that is really a gift, is to tell me to slow down, bring my babies up onto my lap and snuggle with them.  On days when I feel bad, we read. If I don’t feel up to reading, we watch a nature show together and talk about it. We play little games, sometimes with me laying down and the game resting on my tummy. My daughter has officially labeled me, “the best pony mom in the world” because I play ponies. A world title... not so shabby for a sick lady.

Here are my new rules:

If I’m tired I sit down.

If I am sleepy, I cancel plans and take a nap.

I don’t schedule more than one "outside" activity a day if I can help it.

As far as housework goes, if I get ONE thing done a day, I am a rockstar! And if I don’t, I praise myself for taking the day to rest.

Three months ago, I spent every waking minute on the couch or in bed. Unless I was absolutely forced to go get groceries or to take a child somewhere, I was on the couch laying down.  I now take two naps a week, instead of two a day. I’m getting my house tidied up little by little. I’m doing more things with my kids outside of the house. I’m starting to work on projects again. I am more cheerful and my anxiety is decreasing. My Hashimoto’s symptoms are less intense, and I’m feeling more hopeful. 

You’re going to be okay.  It’s going to be hard, 

but you’re good at doing hard things!"

*****

I can't think of anyone to whom this simple note does not apply.  We all need to take better care of ourselves.  This world we live in, with it's schedules and expectations, is so hard on us.  We are all suffering from being overbooked, undernourished, sleep-deprived, toxicified and spiritually drained.  If we don't care for ourselves, who will?

My heart has started listening. As I have begun to feel more patience with myself, I’m feeling more for others as well. Including the mirror-holders in my life. 

I replaced a GFI outlet the other day.  I know that's not a big deal for most.  It wouldn't really be for me either (except for a slight fear of death by electrocution), but it was my ONE THING for that day, and I did it.

That makes me a Rockstar, baby.

As Fun as a Needle in Yer' Neck!

So autoimmune disease

is like this:

Your body is a house.

Your immune system is a bodyguard 

set outside the door to keep you and your house safe.

One day the bodyguard opens the door, steps in with a baseball bat, and starts

 bashing the crap out of your tchotchkes and thingamabobbles. 

  Then he bonks you on the head for good measure. 

Sadly, Western Medicine's approach is:

Get a broom and dustpan and sweep up behind the bodyguard, 

replace the Ming vase with a coke bottle, 

and slap a bandage on your head.

They do not, however, try to kick out the bodyguard.

The cycle is expected to continue until the house is destroyed and you have hamburger for brains. 

Then you get moved to a cheap apartment.

All that is to say that the basic approach is to treat the symptoms, replace the hormones that the damaged organ is not able to make, and wait

 for more damage and eventual destruction. 

It's not how I do things.

I study. I research. I experiment. 

My goal is to find a way

 to reform the bodyguard. 

Maybe even get him back on my side. 

*****

This is how it’s been:

GP, Rheumatology, Head and Neck, Dermatology, Allergy, Optomology and Opthomology have all sent me on to the next guy. It’s autoimmune hot-potato

(and, by the way, each one have said “There is no research to support diet changes, but if it makes you "feel better", go ahead.” And by feel better, they don’t mean physically). 

I had been told by other autoimmune folks not to hope for much from an endocrinology appointment. 

 I kept my expectations low. 

After the usual “where does it hurt?” chit-chat, Dr. P did an ultrasound of my thyroid. The growths were only slightly suspicious to her, though she admitted that cancer tended to have vague borders, which my growth (she said there was only one) had. She told me a biopsy was up to me, or we could wait and see. 

Hmmmm... wait 6 months and see if it’s cancer, or find out now.... 

what to chooooose....

Now, please!

Oh, wait, she meant NOW now. 

No appointment for a month from today. 

Now. 

I hoped up on the table, she sprayed my neck with utterly useless numbing spray, 

and then sunk a needle into my throat (the answer is 

YES.IT.HURT.LIKE.BLUE.BLAZES!  Thanks for asking).   

And if one stick in the neck was good, four was even better.

Guy said he could see the needle on the ultrasound as she dug all around in my neck with it each time. Apparently it is a little unpleasant to watch.

Of course, I was sorry to have been such a nuisance to him. 

On my end, it felt like my throat had mice with ice cleats on running around inside it.

She bandaged up my neck. 

I was miffed that after all that, 

she gave me a Barbie doll bandaid. 

It was kinda’ insulting, frankly.

She then gave me a prescription. Traditionally I avoid meds when possible, but new research has indicated that even if my thyroid levels are in the safe zone, they might be too low for me personally. So if a small amount of  medication could help my symptoms, I was willing). 

But my favorite part of the appointment was when she encouraged me to modify my diet. 

WHAT?! A doctor that believes you can influence your health by improving your diet? I pretty much almost hugged her!

She made a few suggestions. I smiled at Guy. I told her what I have been doing the past 2 months (more on that later). She was surprised and the strictness of my food protocol, but was all in favor. 

We chatted about a medical industry that is driven by pharmaceutical companies who finance studies intended to promote dependence on the drugs they manufacture. Of course, there aren’t many studies on diet!  No drug company wants you to see food as medicine.  Grocery stores don't require prescriptions.

*****

So that was last week. 

And lucky you, you don’t even have to wait as long as I did for the results. 

Negative. 

Yay for no cancer! That’s twice in two months.

I guess, for that, I will forgive them their puny bandaid. 

When God Clears Your Calender

Hmmm...

Where to begin?

I’m told often by a few people who love me that there is (and has been) a lot of stress in my life. They have worried for my health. 

And perhaps it's true. I may have overloaded myself a bit; may have been swimming in a chemical sea of adrenaline and cortisol.  There's the 7:30 am retrieval of Ellie from scripture study class in town.  Ellie and Tessa combined have 8 classes, plus music lessons in far flung fields, and with Jonah, all three have horseback riding on Fridays;  I teach 3 art classes, and have a hefty calling at church and extra assignments.  We make, on average, 10 trips to town every week. And that's just school.

In mid-September, around the last time I posted here, the stress bucket sort of spilled over in the speckled spectacle of shingles; with it's searing skin, electrical shocks, flu symptoms, and aching muscles.  It carried on for three months on my entire right side, from scalp to knee.  

As shingles is triggered by stress, I would have to acknowledge the flow that filled the pail in the first place.  Guy reminded me that August saw a breast biopsy, wherein the machine broke down, leaving me locked in the clamp for two and a half hours, tools deeply embedded, tears flowing. With the happy news of a negative diagnosis, no one mentions the two challenging months of healing.

Or before that, the year of roller-coastering with non-bloggable kid drama and trauma, of negotiating our new world in the woods, of figuring out life as caregivers, and before that, all the business of fixing up and selling one house while buying another. 

Yah. I guess folks have been right. Life has loaded my plate. Or I did.

Or both.

After the shingles hit, the doctor said I needed to lighten my load.  With homeschooling there have been so many classes and commitments.  We are running all the time.  I thought about what I could cut.

Then an ache came.  It was in my wrist and thumb joint, and then migrated to the elbow.  Now it's from the shoulder down.  The jolts if pain from the shingles had finally began to fade, but for some reason the flu symptoms had gotten worse.  One day at church, I reached my hand out to receive my weekly high-five from my favorite 4 year old, Dean.  His little smack felt like a hot explosion in my hand that went on hurting for a half hour.  

I finally caved in and went to the doctor

 (I mean, Dean is a tough kid, but he's, like, 3 feet tall)  

13 blood tests.

A rheumatology visit

One positive.

A possibly-false-positive.  Because an agitated immune system can trigger a false positive.  More tests would follow after two months, just to give the shingles time to re-roof.

So far no improvement.

So I trimmed to our schedules a little.  We dropped a couple of classes for next semester, but I just really couldn't see how I could cut any more.  Not right now. 

I thought.

It rained on Sunday.  After church we ran to the van to stay dry.  My knee sort of buckled and gave out.  I hit the concrete hard.  Something exploded behind my knee.  

*****

And it turns out that there is nothing in my schedule

 that cannot be cut. 

The good news is: no broken bones, and the ligaments, tendons and ACL all seem to be intact, though badly bruised and swollen.  Crutches, ice, elevate, recheck in two weeks.

 And after years of asking,

 I finally got a referral to an endocrinologist...

*****

...and an opportunity 

to simplify.