Book Review: Bodies Are Cool by Tyler Feder

If you know me at all, you know I love books. I was raised by a teacher and a book store manager, both avid readers. Even though Wallace can read quite well on their own, I read to them nightly and randomly throughout the day. We also have a couple audio books going at all times. My mom read to me in the evenings at least into middle school, which was great.

A library copy of Bodies Are Cool on top of my pastel colored granny square afghan.

We picked up some requests last Saturday, including Bodies Are Cool by Tyler Feder. I can’t recall where I heard about it, but Wallace brought me this and two other books on Monday morning in bed. (I use our local library system like some people use Amazon.) They had already read them but wanted me to read them aloud as well. We started with this one and we both loved it!

First of all, the illustrations are fantastic. There is so much detail but not in an overwhelming way. Each person drawn in this book looks like someone we could encounter in real life. They are all unique and have different skin color, eyes, hair color and texture, shapes, sizes, and every imaginonable difference. Each page pointed out some way we all differ and then we poured over it looking and talking about everything we saw. There are people with skin conditions, scars, limb differences, prosthetics, mobility devices, hearing aids, colostomy bags, glasses, and so much more.

Every page shows a different scene with people doing something together or near each other. Playing in a pool, a cook out, an afternoon in a park, and even an 8th birthday party where we see mostly the legs showing under the table. Just the act of existing in the same frame and not pointing out shortcomings or being rude seems like a huge accomplishment for a children’s book about diversity. It simply states a difference and then shows us a dozen ways a person can be.

The words are simple and a bit rhythmic, which leaves a lot of room for conversation and observation around the illustrations. Wallace would point out things they know about, like prosthetics and limb differences, and ask about things they don’t, like feeding tubes and vitiligo. This is definitely a book I would welcome in my home library and I highly recommend it. It might be a nice addition to have a resource for parents to learn more about some of the differences shown, so they can have fuller conversations.

Wallace says: I love all the diversity. I like how much detail there is. Each time you look at it you see more stuff than you had before. I don’t like that it said, “bodies are cool” on every page. I think it should have been on just a few pages. Anybody who can get it, should probably read it, at least once.

Posted in Books, disability, family, health, LGBTQ, Parenting | Tagged , , , , , , | Leave a comment

Freckle Fiasco

Regarding my last post, WordPress is looking into my lag and performance issues with the app. I even made a video of my screen while I wrote a test blog post so they could see in real time what it is doing on my phone. I don’t think it is just me, but might be a certain type of phone. I’ve been with WordPress over 10 years and definitely want to keep blogging here.

Onto the point of the post. I try to get new glasses every year, but last year I didn’t. I went to an ophthalmologist, because I wanted to be checked for swollen optic nerves as it is a sign of Intracranial Hypertension. It can be common with Chiari and I have had signs of it. The place I had gone to accepted my insurance for the medical part and eye exam, but not for glasses. I had a lot of other things going on and was trying to minimize our Covid risk, so I never went someplace else to get my RX filled.

A few weeks ago I saw an optometrist to get my eyes checked so I could actually get new glasses. At my first appointment, she had forgotten the new bottle of eye dilating drops at home. I made another appointment for the next week, but she had a sick baby and had to call out. I decided to wait until my glasses had come in and schedule to pick them up and do the drops at the same time.

After looking in my eyes and shining lights at me and having me look all different directions, she casually goes, “has anyone mentioned you have a freckle in your right eye before?” Uh, no! And I didn’t even know that was a thing. She didn’t give me a lot of information, so I started researching once my eyes went back to normal that evening.

Me in a blue fabric mask and dark plastic over my glasses with Wallace in a brown dinosaur mask.

The next day I called the last two places I went for eye exams and neither of them had notes or images regarding the freckle. That means it appeared within the last 13 months. I decided to play it safe and get it monitored. It is something like 2-5% chance it can turn into cancer, but I figured a baseline photo and exam would be a good place to start. There was a little bit that this made me anxious, but once I had a plan it felt good to have educated myself.

So, today was eye dilation round two! Back to last year’s ophthalmologist. It all went fine and he said that the freckle is really small. He didn’t seem to think I’m over reacting and ordered the images oof my eyes so we can have something to compare to next year. Unfortunately, these eye drops must have been stronger or something because I got a headache from them and my eyes were dilated for over 6 hours. It was not a fun evening!

The doctor also said he still sees no signs of downward nystagmus, which is one of the Chiari symptoms that went away after surgery. Despite how much I hate getting it done, now that we have found this freckle I will be getting my eyes dilated every year and images taken to compare.

Posted in disability, health, Late Night Post, pictures | Tagged , , , , , , , | Leave a comment

WordPress

This is just a test post to see if I’m having the same issues with the app that I had last night. For quite a while now I’ve had a line lag when my text automatically goes to the next line below it. Sometimes I can get almost an entire line of text written before the box expands and I can see what I am typing, but autocorrect and my fast thumbs usually get me through.

I did an app update a few days ago and last night was the first post I had written since then. As of this morning, after restarting my phone, the app is still doing the line lag, but also the new issues. The app just was not responding to my directions and then doing a whole bunch of things all at once. This included pressing enter to get a new box or clicking the blue plus sign at the left above my keypad. And when I tried to add categories and publish the post, it would just freeze for a bit and not respond to my touches. I did not get an alert from my phone that the app wasn’t responding.

It is still giving me issues with making a new box but I managed to add a category on my first attempt, so that is good! I didn’t have these issues with the old setup, before these boxes were introduced. I was a hold out and kept using the old editor on my phone and on the computer for as long as possible. I have been told it might have to do with my phone, despite it being only a little over a year old old.

PJ, a black and white lop eared rabbit, sitting by a terra-cotta dish of bright green dandelion leaves with red stems.

One thing I’m not having issues with is adding pictures and captions. Once I get the plus button to respond, I can easily choose the image option, upload a picture, and write a caption. It seems that I need to press the plus button then put my phone down for a minute and it will pop up when I look next. Not really a fun way to write!

If I want to change between boxes to edit or add something, it also takes a long time to respond. Alright, time to get on with my day! I’m really hoping these issues will be addressed eventually as I intend to try to write at least weekly. I have a lot going on in my life and need this space to journal and reflect, especially since the time and energy for my YouTube channel is nonexistent.

Anyone else having these new issues?

Posted in Uncategorized | 2 Comments

Micro Blog Monday: Today

Today, we worked on school work that I mistakenly didn’t give to Wallace on Friday. So we are a day behind, oops. Good thing we can do what we want.

Today, I made a lot of phone calls and checked a lot of things off of my to-do list. I called four doctor’s offices. Typical Monday being chronically ill.

Today, we went for a walk in the neighborhood and played Pokémon Go for the 3rd day in a row. We took over the gym at the local fraternity house and took a look at some headstones at the cemetery. We won’t be able to go tomorrow because it is likely going to rain all day and I could use a rest day.

A white cloud shaped Pokémon with pink ears, eyes, feet, and tongue sitting on a rock in a partially cleared out garden bed.

Today, we played Clue Jr together. A piece accidentally fell over and it was very nearly a disaster because I saw a clue I wasn’t supposed to. Good thing I can pretend like I don’t know something and we were able to wipe tears and move on.

Clue Jr characters lined up in rainbow order: Scarlet, Mustard, Green, Peacock, Plum, and Orchid.

Today, I didn’t start making dinner until almost 8pm because we were playing the game. I made black pepper chicken and green beans that had so much pepper in it my face and back of my neck were sweating. I will be adjusting that recipe and trying it again. At least Wallace liked my method for cutting the chicken. I did thin flat pieces to be more like they usually do at the Thai restaurants we go to.

White plate with a small fork and a serving of white rice topped with chicken and green beans in a light sauce.

Today, I started with a headache and ended with a lot of pain in my right hand. I hurt all over and thinking feels like when you dribble a basketball but it is flat and it just thumps and sort of rolls away a little.

Posted in disability, food, games, health, homeschooling, Late Night Post, Microblog Monday, Parenting | Leave a comment

Lead Poisoning in the Midwest

As someone who has been lead poisoned and has a kid who has been as well, every bit of factual awareness on the topic is really exciting. So here’s a recent article from NPR.

Lead poisoning is real and isn’t just an issue of the past or for babies eating flakes of old paint. There are leaded items in every home that cause cumulative exposure that can lead to long term health problems. There are so many conditions linked to lead, because it is a neurotoxin, that many of us are likely dealing with the effects of lead throughout our lives. Unfortunately, most people think that if they “turned out fine,” then there’s nothing to worry about.

Things in my childhood home that had or likely had lead: stained glass window and lamps, old paint and stain, sewing machine table, doorknobs and cabinet/drawer knobs, buttons, China cabinet, Corelle dishes, Pyrex bowls and measuring cups, family China, new and old toys, books, records, cassette tapes, musical instruments, furniture. And of course the infamous antique army trunk that I believe was the cause of my most acute poisoning.

Loose and broken tiles that are a lead concern in the 1950s home we currently live in.

I can only do so much to remove lead from my current home because there are items I can’t avoid using, like my house and car keys. And there’s the fact it was built in the 1950s and I can’t do anything to remediate the known/suspected lead issues here. So that is why Wallace is getting a lead test next week with some other routine blood work. It will be the first time since they were tested after I found their BLL was over a 5 at the 18 month WIC appointment. I did not know that I should be getting it checked regularly to make sure it was going down after I identified and removed th army trunk.

If lead isn’t currently on your radar, this is new to you, or you want someone to talk to about all this, I’m here. Also, Tamara Rubin has a Facebook group for helping people learn more and make safer choices. I’ve been at this for over 7 years and I’m still learning more every day.

Posted in background, disability, family, health, Linked Up, Parenting | Tagged , , , , , , , , | Leave a comment

MRIs, again.

I’m still here. Just getting through each day as best I can. I have my positive moments and the days where things feel like they flow. But really, it is hard. I’m no closer to answers about my left leg or my other symptoms than I was a year ago. So it was back in the MRI machine tonight for brain and cervical, with thoracic and lumbar on Monday.

Myself and one of my PTs suspect I have tethered cord. Except it didn’t show up on my MRIs from February 2021, so that would make it occult and most surgeons either don’t believe in it or don’t want to/can’t operate on it. My PCP agreed on ordering a new series of MRIs and is sending out referalls to my original neurosurgeon and the one occult tethered cord specialist that I’m aware of.

It would be so much easier if my surgeon were to acknowledge my symptoms, history, and any signs on the imaging that something isn’t right. It is an hour and a half drive, whereas the occult TC specialist is on the east coast. As much as I don’t want to need another major surgery with long recovery, I really need answers and help and I hope that these new images point us in a clear direction.

On top of the fatigue, migraines, pressure headaches, pulsatile tinnitus, weakness, brain fog, left leg issues (knee buckling, muscle wasting, and foot drop), bladder issues, and a handful of other things, I have had a cough since mid September 2021. I hadn’t just been sick and I don’t have any airborne allergies.

The pulmonologist I saw a couple months ago had me pause the inhaler for 2 doses and then do some breathing tests. I was told that from those results I don’t have asthma. I was told to schedule a follow up and to stop my inhaler a few weeks before. I just weaned off of it and the lung issues are in full force. I’m not gonna hold my breatb that this doctor is going to figure out why I developed breathing issues out of thin air. (Yes, I said it!) My theory is mold or MCAS/EDS related.

I am hopeful that being off the inhaler will improve my sleep. I haven’t woken up feeling remotely rested after 8-9 hours of “sleep” in a handful of years. So any little improvement is a big deal to me. I do (or have done) all the things except for the completely no screen time before bed. I use blue light filters and don’t do anything that gets my brain wired.

An odd picture of Alice and me. She was cuddling with me while I dealt with a severe headache.
Posted in body talk, disability, health, Late Night Post, Sleep | Tagged , , , , , , , , | Leave a comment

Ticket to Ride Michigan

We love playing games and Wallace loves trains, so it was inevitable that we would end up with a version of Ticket to Ride. For Christmas 2020, they received the First Journey US version and we’ve only just gotten really into playing it. I also downloaded the kid’s app and play it more than they do, ha!

I was poking around on the company website and found they put out a free PDF Stay at Home game a little while ago. Fun idea! But, we don’t have any of the adult games required to use with it. I decided we would convert it to a kids version!

Ticket to Ride Stay at Home, converted to First Journey version.

We started by printing out the playing board and the cards, cutting them, and taping the pages for the board together. Then we counted the different color train spaces on the game we have and cut 24 little rectangles of each color (more than we needed). They are larger than the spaces on the adult versions and we knew we would have fewer to work with, so it worked out. We also took out route cards that were only required one section of track and those that needed more than four to complete. We removed and route cards that used the guest bathroom.

Finally, we laid out all the little paper rectangles. That took a bit of time and patience in order to make sure we weren’t doubling up colors or making any of the route cards impossible. It would probably be really hard to play with four people, which is fine as we usually only ever get up to three players.

The results of our first game of Stay at Home.

But what about Michigan?

I got to thinking about what else we could do and if people had made their own games of different places. I looked up Michigan and realized we could just use a map! I pulled out a 2008 Michigan road map and ordered us a replacement for our little collection of maps.

Rough draft using Lego pieces to mark our cities and track sections.

This took a lot more work because we were starting almost from scratch. We had to find cities that were far enough apart and make sure there were multiple paths connecting places.

Before we glued.

I dawdled for a few days and worked on other things before coming back to finish it. I used address label stickers to write the city names on and cut them to size. Then we found some star stickers and used those to mark each city. The final step was writing up route cards, which took some debating and planning (and I would gladly share with anyone who wants to copy). I happened to have fancy perforated paper for printing business cards on, so we used that and aimed for about 30 route cards. I wrote them on by hand because I didn’t feel like dealing with getting the printer to format correctly for the cards.

Our inaugural Ticket to Ride Michigan game!
Posted in crafting, games, homeschooling, Parenting | Tagged , , , , , , , , | Leave a comment

Dear Grandpa,

I miss you tremendously. I can’t fathom a world that doesn’t include you and it hurts to know you aren’t in it anymore. To know I won’t get one of your hugs, with a kiss on my cheek, ever again breaks my heart open. I miss your voice already.

I have so many good memories of us together when I was a kid, but I wish I had more adult ones. I’m sorry I didn’t stay in touch better, write and call more, and make it for all the family events. I haven’t had the best examples for making family a priority, but I’ve always loved you.

I’ve taken for granted your, and Grandma’s, constant presence in my life. Every phone call or card were par for the course and now there won’t be anymore. So thank you for loving me in all the ways you knew how. I think being that constant presence was one of them.

I will make sure Wallace knows you were a decent man, a loving person, and that you always got down on the floor to play with every grand kid and great grand kid. We will keep you alive by telling your stories and loving each other.

I remember sitting on your knee while you jostled me up and down, singing a little tune. I remember the smell of your pipe tobacco and the place they lived in your shirt pocket when I was little. I remember when you went to Kroger and asked for help so you could find gluten free flour to make gravy for Thanksgiving that I could eat, too. I remember how easily you smiled and laughed and loved.

Thank you for these hands with their flat nails and sturdy fingers. Thank you for the determination to always put one foot in front of the other. Thank you for the eyebrows that have been trying to grow together since back when tweezers were just for splinters and stingers. Thank you for paying the long distance bill every time Grandma called me in Chicago (and every time since then while I stubbornly hold onto my old number). Thank you for these ears that I only just realized I got from you.

Love, Jennifer

Grandpa and me at a family wedding.
Posted in family, pictures | Tagged , , , , , | Leave a comment

DIY Pokeball Bike

Wallace outgrew their last bike and so I wanted to get the next size up. The plan was to just get any used bike and maybe give it a coat of paint to make it neat and new. Instead it turned into a massive project that cost almost as much as buying a new bike, but it was worth it!

The blank canvas.

The bike we started with was in way worse shape than expected, so that is where most of the cost came from. But it was free so I was able to make it work. I bought new tires, two cans of spray paint, a kick stand, and one set of break pads. I used tools I had on hand and amazingly the tubes were still intact and worked just fine. I also used grip tape that I happened to have on hand that I grabbed on clearance years ago. It doesn’t have a chain guard, which would be nice to replace somehow. The pedals were really bashed up so I replaced them with ones from the tag-along bike we aren’t using right now (since riding hurts my neck too much still).

Naked bike.

I prepped the bike for painting by taking most of it apart. If they had done a better job on the painting, I probably would have taken more of it apart and done a better job on mine too, but I just needed to cover up all of their black paint. I took off the wheels, the pedals, the break handles, the torn apart handle grips, and took the chain part way off. I used torn up plastic bags and box tape to cover over the parts I left on that I didn’t want painted red. The previous owner had just painted the whole thing matte black without removing anything. Even the chain and wheels. I should have put down more cardboard since I did get some spray paint on the driveway, oops.

I used electrical tape to cover over where the chain goes.
I hadn’t been able to get the left pedal off before painting. Tip for others is the right goes how you’d expect and the left goes opposite. I had some advice online and found an article that explained it with pictures.

My paint job was not perfect, but I was trying to get it done in one coat. I chose a high gloss that looked like it would work for this situation. I did sand down some rough patches from the black paint first, and then wiped it down thoroughly with a damp rag to get any dirt and dust off. I had some drips and some spots that could have used a 2nd coat. It was my first time using spray paint and my arm was feeling it!

I finished up in the dark, so it could dry over night before assembling. Then I had to bring it all in because it was forecasted to rain!

One of the wheels was half painted black and both tires were completely worn out. I decided that since it was going to be red like a Pokeball I should make the wheels white to fit the theme! I taped over the center parts with the gear and the bolts with my same method of plastic bag and tape. My arm was so sore by this point and it was getting dark, so I missed quite a few spots. I went with the “won’t notice on a trotting horse” theory and didn’t go buy another can of paint.

Back together again! It looked so good with the white wheels and black tires.

The next day I got it put back together before Wallace was due home from a week at my mom’s. I got the kick stand installed and the new grip tape on. The next step needed Wallace’s expertise.

Sickers!

My dad had bought Wallace a pack of really nice Pokemon stickers and once this project started taking shape we knew they needed to go on the bike. And not just to cover up my drips and smudges… We spent quite a while deciding on which stickers to put where and get them on as smoothly as possible.

Final touch!

And of course it needed a Pokeball bike basket! I started basing it off of a pattern but ended up making it my own so I plan to turn it into a free pdf pattern. I still need to install the new break pads on the back and the front breaks don’t really work, but it has the kind to pedal backwards anyway.

Posted in crafting, Parenting | Tagged , , , , , , , | Leave a comment

Lead is a Really Big Problem

There is no safe level of lead. And yet companies are allowed to do their own testing and reporting in regards to levels of lead in their products. The consumer safety measures that are in place are not enough, in part to lead lobbyists. Lead is bad for everyone and yet it is still allowed in many new items made today in the US and around the world.

The most at risk group are infants and toddlers because they put their hands and many items in their mouths, they are small, and their brains are in a crucial state of development. But companies are allowed to make and sell baby food that contains lead without repercussions and stricter regulations. And there is lead paint on baby bottles that have not been recalled. On top of that, older items intended for children are not recalled because they met the regulations at the time, which were often none.

Products currently being made for children are regulated to be under 90ppm of lead and yet many aren’t meeting the standards. Some because no one is fully monitoring them and others because they are imported and sold by fake companies to get around those regulations (never buy things online that aren’t from a traceable company). It’s all about profit.

There are also many items being sold today that aren’t regulated because they are not “intended for use by children under 12.” Some of the items that are not intended for children but contain high levels of lead and that they interact with regularly include keys, dishes, and Christmas (etc) decorations. Children don’t live in bubbles of only items intentionally made for them that are fewer than 10 years old, and they don’t become immune to the toxic effects of lead when they turn 12!

People have been lead to believe that this is a problem of the past because in 1979 it was banned in the paints and stains of new buildings. We’ve been taught that the only way to get lead poisoned is to be a baby and eat leaded paint chips. This completely disregards all the old and new sources of lead! Even this recently published story focuses a lot on the lead levels of children 6 and under who live in old homes that could have lead paint. This direction of research and reporting disregards the very real low level lead exposure that comes from many sources in our lives, and which can lead to acute poisoning at any time.

Yes, young children in old homes in low income areas are at higher risk, but that doesn’t take into account many of the other factors such as nutrition, water sources, old school buildings, knock off toys, and, a new favorite for remodeled playgrounds, tire mulch. It also doesn’t factor in better off families who hand down old toys and furniture, live in old homes, and use all the same everyday items that contain lead. This would have been my demographic when I was acutely poisoned as a teenager.

If you click on only one link in my post, please let it be this full length film about Tamara Rubin’s consumer advocacy work that is free on YouTube. Start there, watch it, share it, and start looking around your home and community to see what ways you can reduce your lead exposure. Tamara can be found on Facebook, Instagram, YouTube, and TikTok under the name Lead Safe Mama.

Posted in background, breastfeeding, disability, health, Linked Up, New Parent Tips, Parenting, pregnancy | Tagged , , , , , , , , | Leave a comment