Medical Update

There’s so much going on in my life right now, so maybe putting some of it down will help me. I haven’t been writing much because my brain is all over the place and I haven’t had the energy. It doesn’t help that I have the lag when I type on here, but I have hope it might be corrected soon!

In the medical stuff, I am trying to get assessed for occult tethered cord, which could be the cause of many issues including the left leg weakness and buckling. My local neurosurgeon who did my Chiari surgery 2 years ago (just passed that milestone!) doesn’t diagnose or treat occult tethered cord, but I gave her a chance to look at it all again anyway. In a month I will be traveling to the east coast to be assessed by the leading OTC surgeon. I am nervous and excited and hopeful.

My PCP switched offices and the new office doesn’t take my insurance. This sucks and now has me in a bit of a bind, but I can switch to a different doctor at old office. I was with that PCP for almost a year. I had to hurry and find a new one after I got a call from the office of the previous PCP the morning of my appointment that he would no longer be at the office and I couldn’t see him. They didn’t offer to switch me to someone else in the clinic, so that sucked.

Using a stepping machine at PT.

I started PT again, to try to strengthen my core, legs and arms/shoulders. Unfortunately, it is so easy for me to overdo it and crash from fatigue or get knots in my muscles. I am also going for walks and hikes and doing my exercise bike st home. I’m trying to find chances to work on stairs, which I’m getting better at with my orthotic on. Unfortunately, it seems that overall my lef is getting weaker and lessbstables. I don’t always wear my orthotic at home and I don’t wear it on my bike or a step machine at PT, but it seems wobblier and like more of my muscles are getting less of the signal from my brain. It’s hard to explain and I have yet to have a doctor figure out what is going on.

I’ve been trying some different medicines, which is not something I’ve done in a long time. I started Low Dose Naltrexone for pain, but after a few months of trialing it I had no decrease in pain and it made it so I couldn’t take a couple different medicines. I also started Emgality, and injection for migraines that they ship to me once a month. It has greatly decreased my migraine days, though it doesn’t work on my Chiari/pressure headaches. As of right now it seems worth it to keep taking it, but it might be causing me to gain weight. The other new medicine I have been taking is Midodrine. It is supposed to help with my chronic low blood pressure, but I need more guidance on it to figure out if it is actually helping. I was supposed to see my cardiologist today but he was called for an emergency surgery.

Partly crushed Emgality box with a root beer sucker on top. Gotta have a treat after!

I have more topics to write about, so hopefully I will remember and do that soon. A lot of big changes in my life and the other things are definitely more positive, ha!

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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.

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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.

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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?

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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.

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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.

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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.
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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!
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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.
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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.

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