I stubbed my toe three times today. The same toe. And it's not even like my toe grew and I don't know how to use it all of a sudden. It's still a regular toe, it just hurts now.
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I've been posting some art and stuff to Instagram.
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I cleaned out the front hallway closet and the entry way to make way for winter junk. Spent a lot of time matching gloves and emptying the hall bench of hats. I don't know why I have 28 baseball hats, I've never bought a one (with the exception of the Superman one I bought for Jack at Metropolis.) Maybe they're like TV's or Stephen King books, they just appear. If you don't have one, someone will incredulously insist you take one from them, there are three of them on the curb right now a block from here you can walk down there and get one.
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We're having guests this weekend and I suddenly feel like we don't have any guest pillows in the house. I need someone to incredulously thrust some wayward new pillows into my possession. Do people still put the guests towels out? Is it possible for people with children to even have nice towels? I'm forgoing the nice towels and spending the money on Mrs. Fischer's local potato chips and booze instead. That's more like the kind bed and breakfast I'd run. You get crappy towels but we make a good martini and then you no longer care about the scrabbly terry-cloth parts hanging down past your knees after you get out of the shower. We're all that and a bag o chips!
I'm watching this video make the rounds on Facebook today, in which a self taught sculptor is carving caves out of sandstone in New Mexico with his hand tools. The man's art is amazing. The reporter makes sure to tell viewers he only makes $12.00/hour and his custom livable art homes sell for a million dollars.
I've been skating the bike-path almost every day it doesn't rain and even once when it did. It's 4.5 miles-ish and it's taking me about a half hour. I enjoy looking at the river and seeing how the waves are. Some mornings it seems to barely move, it's all reflective and glassy. Other days there are waves and I know going into the wind is going to be difficult. It'll feel like I'm a giant kite battling the wind with my legs and I'll hear my heart beating in my ears on those days. I'm enjoying seeing the sames sorts of people each day. There's the regular runners with workout gear and headphones moving on down the road. There are the walkers in business attire and tennis shoes on lunch/break gabbing with each other in pairs and threes. There are the new mom's looking frazzled strollering and pulling and adjusting their clothes uncomfortably. There's a dog who always barks at my skates and at the other end of the leash a pet owner who looks surprised by the outburst. There are the fishermen/women sitting in folding chairs and pop-up tent shades along the banks, they smoke and have some sort of game their listening to and a five gallon bucket for the catch of the day. There is usually a biker looking seriously stoic under a helmet going by in a gust. Then there's me, wearing all of my derby pads because if I fail to jump or dodge an erratic goose and I it takes me out, it'd be a long sore embarrassing walk home covered in scrapes and goose feathers. I'm swish swishing along red faced, sweating and listening to Proud Mary, the Tina version of course.
I have a really hard time not poking the bear. Especially when I'm right, even though I know the bear bites and has crazy huge teeth. It's a life lesson that is hard to adhere to. Sometimes it is important to stand up and fight and sometimes it doesn't really matter to anyone but me, but every time feels like the most important time to me. I lie awake at night obsessing about the perfect stick I could use for poking the bear and even wondering how small of a stick I can get away with before the bear notices me back there jabbing away. Or what will the bear do if I accidentally drop the stick and it rolls down the hill and bounces off a rock flipping through the air landing pointy side down on it's butt?! I take specific delight in watching other people poke the same bear and then getting eaten, followed by congratulating myself for not picking up the trivial-stick at all. What the hell?!
DISCLAIMER: This is seriously long and probably boring to you unless you've been on this particular roller coaster and want to read someone else's story. It's like a birth story that way, you don't really care about until you care about it and then you want to read everything you can about such things.
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I was on a very low dose of Synthroid while I was pregnant. My pregnancy was high risk. I was over 35, had miscarried twice and was on a bunch of hormones and the like to keep things on track. The generic made me itch, and Synthroid didn't- so I was on it. I went off about a month after the baby was born.
Two years later my doc found a goiter and put me back on it. She said if I took the Synthroid the goiter wouldn't grow and turn into cancer and I'd have more energy, probably loose weight, my dry skin would get better (I am a lotion addict) and my life wouldn't feel stretched so thin all the time. Those seemed like wonderful things to fix with an easy pill, plus no-cancer! So I set my alarm at 4am every day and woke from a dead sleep to a tiny round tablet then back to dreamland while the Synthroid flowed through my body re-regulating everything. Finding the right dosage was a slow dance of giving blood every three months and readjusting.
Sure enough I had a burst of energy at first and seemed super happy, then I gained weight and got tired. I told the doc and she ordered labs and upped the dosage, wash, rinse, replete until I had gone from the very lowest dosage to the very averagest of dosages. Over the next two years each time I went in I'd report another symptom or two; I was running/skating 15 miles a week and couldn't loose any weight, I had super dry skin, maybe brain fog, maybe irritability, maybe nervouse like I forgot something, crying at the drop of a sappy commercial, joint pain in my feet. Each time I was met with (in hindsight) a dismissive response;
"Your hypothyroidism will cause that, we'll adjust the dosage and see if we can get you on the right track."
"Well, you are in your 40s now and loosing weight is tougher. Here's an app you should use and track everything you eat"
"You should start walking instead of running, you have to let plantar fasciitis rest and heal."
"Take biotin for thinning hair and weak nails."
The symptoms continued to pile on and worsen, me and the doc talked about life stress - Yes, I was in the middle of negotiating a divorce and raising two kids, buying a house, starting a business and adjusting to a new city. Stress can be horrible on a body. Applied at length, it can cause your body to attack it's own thyroid. This seemed to make sense to me. Instead of upping the dosage again I decided to try to de-stress. I started deep breathing, I put my business on the back burner, I made lists of things that are relaxing, I took note of when my mind was quiet. I let things go, dishes pile up, laundry go unfolded.
The brain fog, the over emotional reactions, the weight gain were all still there. The ritual offering of blood to The Lab continued - and the thing that made me absolutely panic, my hair, wasn't really recovering. Trying to grow my bangs out was taking a year not just a few months.
I doubled down on de-stressing, made an appointment with an endocrinologist (six weeks out) and gave more blood to the lab. This is when my insurance changed and I had to prove I was allergic to the generic. So I switched to Levothyroxine and itched all over my whole body, then I switched to Levoxyl and itched again - even inside my ears! I started paying for Synthroid out of pocket switching pharmacies every month to get the free $25.00 for switching. $50.00 every month was getting expensive. I finally saw the specialist and she was alarmed to find the goiter had grown. A lot. I scheduled an ultrasound and another biopsy. I spent two weeks steeped in extra stress about cancer and extra stress about the extra stress. I read everything on the internet about the four types of thyroid cancer and made a list of questions for each specialist. It was a mess of insurance red tape, worry, and bad sleep.
The biopsy was benign. Thankfully.
My specialist ordered the highest dose of Synthroid I'd ever taken and more labs, then an odd thing happened - the name brand also made me itch. It made my gums itch. I'm sure I looked like a tweaker, scratching and twitching and brushing my teeth as often as I could - drinking water non-stop. The Endo wondered if I was allergic to the die they put in the higher dosage and we talked about maybe taking two pills of a lower dosage... then it occurred to me...
WHY AM I TAKING THIS?
Originally I'd never had a single symptom of hypothyroidism. I was put on it to stop the goiter from growing and it grew anyway.
WHY AM I TAKING THIS?
My family full of thin, hyper, stoic, carb eating Italians, who have always had a thick head of black hair far into their 80s had never had any hormone issues. I was sitting in a specialist's office pudgy, tired, irritable about having given up toast, crying that my hair was falling out, growing a goiter and trying to figure out why my body wouldn't cooperate with these meds.
I asked the specialist the single most important thing I've said in the last month...
"What if I didn't take anything?"
I've been off for 3 1/2 weeks. I have to go get labs next week and of course we're monitoring the dreaded-goiter situation. She warned that I may get tired or gain weight and that if my symptoms got really bad we could try Armour Thyroid tablets (A natural med made from pigs and less reliable in the dosage measurements and so less prescribed.) For the first few days I monitored everything including my pulse. I felt confident in giving it a try and monitoring how I felt.
How I feel after 25 days:
-I feel freaking great.
-Of course I stopped itching.
-I have energy.
-My pulse and blood pressure are way down.
-I'm more patient.
-I'm making less lists.
-I can handle multi-tasking again with lots of background noise.
-My joint pain is gone.
-Having a hard time sitting still (hyper just like old times.)
-Jumpy legs at night again.
-No sneezing hay-fever or snotty head.
-I look forward to skating/running/walking - its fun!
and some unexpected things happened:
-I stopped using my inhaler for the asthma I was diagnosed with about two years ago (the same time I started thyroid therapy.)
-I have more spit in my mouth than I ever remember having - like I could spit on the ground RIGHT NOW an not even have to save it up for a minute first!
-I find things funner and funnier than I did before. The same old corny jokes and dancy antics we have around the house are super entertaining to me again.
-I'm not starving for toast all the time.
-My hands and feet are cold again - all the time.
-My skin cleared up and seems more elastic
-My face seems less puffy.
Some weirdo things that maybe happened - not sure yet:
-I'm wearing silicon contacts today - I thought I'd give them a try and see if they make my eyes itch as badly as they did last summer (I already paid for a month and couldn't use them because of the itching) and they seem just fine.
-I feel less like I'm hanging around above my body with a detached head as an annoyed observer and more like I'm in my body participating in life.
-Whole bits of vocabulary are making their way back into my brain.
-I'm finding life interesting again. Like I suddenly wish I had a good book to read, I am painting more and HELLO BLOG!
When I was first diagnosed I spent hours reading about Hashimoto's and pregnancy and cancers. I devoured everything I could find and especially liked first hand accounts and blog entries that talked about symptoms and dosages. This is my account. Most of the symptoms I listed as better are things that would be better after alleviating a hypothroid situation. Not the opposite. However, it seems taking a dosage not really needed was actually causing my thyroid to under-perform making my symptoms even worse and my number to progressively worsen. Continually upping the dosage was creating a circular problem. I don't really know for sure - I could still be wrong, I have a few more days of 'detox' before I see if I crash into bed an exhausted mess, but right now that seems very unlikely.
What I gathered from years of reading, is that this isn't an exact science yet - it can take years of adjusting to get people where they need to be and most of the symptoms are also symptoms of life and natural aging and stress. They aren't imaginary symptoms however they aren't easily measured. It can also be a lot of pressure for a doctor to look at numbers in a lab test that seem askew and not want to make those numbers fit into a box with an easy pill. Doctors need to listen to how a patient feels and see beyond the symptoms - see the forest for the trees and patients need to be their own advocates reading everything they can and trusting that subtle changes aren't in their heads. I'm not saying stop meds, I'm saying your symptoms are real and there are many options and you have to keep reading and charting and working until you find what is right. Don't be reduced to a number.
I got barfed on. At one in the morning I put a beach towel over the tiny spot that hit the sheet and went back to sleep. Every time the kid rolled over or breathed different, I woke up and asked him if he needed to barf again. He didn't but by 5am my tough little guy who normally rubs dirt in a wound and keeps running, was wincing with belly pains and I could feel the fever radiating off his back. So I warmed up the car and we went to the doc. The nurse got us into a room right away because all the usual trouble makers one finds in a waiting room are still sleeping at 6am on a Saturday, leaving us lone writhing wolves, panting and half crying, to usher into an even smaller room and out of clothes (well, I got to keep mine on.) About an hour of crappy cable TV later a doctor entered in time to witness the very last belly pain of the morning and confirm I would be cancelling all plans for the day in lieu of getting pee on my hand, helping the nurse coax very good tasting medicine into a body, and the longest game of 'Eye spy with my little eye something blue that you're wearing' ever played. Another hour, a can of apple juice, an anti-nausea pill, a Motrin, and a Popsicle went by. The kid slept and I read the entire internet on my tiny screen while sipping the bitterest burnt hazelnut coffee in Illinois. Then we went home with instructions for Acetaminophen and rest (neither for me, I'm sure.)
Did you know they have anti-nausea pills? I just always thought you had to ride it out and barf all the barfs you could barf - like a helpless shrimp, squirming on the cold tile floor of the bathroom.
It's Autumn again and the leaves are crunchy in the yard. The giant spider web is up on the porch and the kids are planning and plotting costumes. I'm doing the giant purge of things as the flip flops and shorts that will fit next year get packed up and the sweaters come out. Likely this weekend I'll stand on a small ladder and carefully balance seven giant wooden storm windows into place and seal up the house for the winter, but I like to seal it up first smelling clean. So I've begun the moving of couches to rid the living room of old Cheeto smell. Next I'll slather all the woodwork in lemon oil and make it all slippery to the eye.
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My ten year Blogoversary came and went. I don't know what to say about ten years. But I keep going. Markedly less because of my recent personal life changes. I just didn't feel like I wanted to share anything during my divorce process. There was plenty to say, but I spoke it out into the air where it would dissipate. This is the place for some permanence. (Unless of course the Internets implode and the Robots take over Earth and erase all previous evidence of human kind and my ten years of droning on about Cheeto crumbs and unmatched socks gets blinked out of existence, or if Blogger gets phased out by Google... whichever comes first.)
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I'm soo out of style I can't care. It's only become apparent to me because I have a middle schooler in the house and she keeps getting taller and so I have to make trips out into the world and spend money on clothing in stores where I could also be buying flouncy sweaters with extra yards of fabric knitted in the front ready to billow out like a lovely fuzzy jellyfish if I choose to spin, arms outstretched to the world whilst autumn leaves fall all around my pumpkin-spiced knit knee-high socks barely peaking out of my slightly worn leather boots fashioned in which the fit forces me to continuously stand with my toes coyly pointing towards each other. While this bohemian chic seems like something made just for me all flowey and cozy and comfortable and quirky, turns out I like jeans and a hoodie paired with tennis shoes and I like standing with my feet planted firmly under me and my hands on my hips like Wonder Woman. It's efficient and also I am ready at any time for a child to fling themselves at me, or to run after a ball before it hits the street, and to shove my pockets full of phones and water bottles and stretchy gloves. There's no catching a kid falling out of a treehouse in that flouncy sweater - we'll both be tangled in a boho nightmare of woolly yarn and leather buckles and choke to death in a snarling gypsy scarf heap.
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My Gentleman Friend is taking me to see The Rocky Horror Play on Friday night. I've never seen the movie or the play. When I told our friend who is in the production this, they rubbed their hands together called me a virgin while cackling with anticipation. I'm slightly nervous about this whole thing now... I feel like I am about to be the only person in the front row without a rain poncho while Gallager gets his Sledgeomatic out - only I've seen enough Rocky Horror pop-culture snippets to know the proverbial Sledgomatic could involve lingerie and or dancing.... or toast and I looooove toast. So it might even out.
