Nina

With Alice sick, it makes me think a lot about my Nina. She got sick 7 years ago and was diagnosed with hyperthyroidism and chronic kidney disease, two things Alice also has going on. She didn’t tolerate the thyroid medicine and wouldn’t touch the canned food for the kidney disease. I started making her a custom raw diet, and when she eventually rejected that, I spent hours every month searching for the lowest phosphorus canned foods she would accept. I also gave her weekly subcutaneous fluids, which wasn’t fun for any of us.

After months of maintaining her quality of life, she quickly declined and I took her back into the vet, the same one we are going to now. Knowing what I know now, I wonder if she had had an infection that could have been treated, but that course of care wasn’t offered to me. I did the best I could and made the tough decision to euthanize her when her quality of life was gone.

I found Nina through a Craigslist ad when I was 21 and living in a studio apartment by myself in Chicago. I had recently cat sat for a friend, and it helped my anxiety so much. The picture in the ad was of her sprawled out on a gray carpet and she was just gorgeous! I went to meet her and she ran towards me, meowing, and putting her front paws on my thighs. I learned that the guy who had her was allergic to cats and his ex boyfriend had left her for multiple months without intent to come get her. Being allergic, he had zero cat experience and had purchased her Iams puppy food, ha! Nina was a big cat, likely Ragdoll breed, and was over 16lbs when I adopted her. All I knew of her past is that the ex boyfriend had gotten her from a shelter in the Ann Arbor area. I had tried to contact him for her paperwork, but he never followed through.

I went back later that night, with the help of a friend with a car, and smuggled Nina into my apartment. I wasn’t supposed to have pets, so I brought her home after the maintenence man had left for the day. I saw the issue with the puppy food and got her cat food the next day. She immediately settled into my little apartment and gladly took over my bed. I remember that first night I was sitting in bed having ice cream (I didn’t have a table or couch as there wasn’t room) and she came to me for attention. She promptly got her massive tail in my bowl. Oh well!

Honestly, Nina was my best friend for 10 years. She had so many hilarious and amazing personality traits and she knew how perfect she was. If anyone came over, she greeted them at the door. She didn’t jump up higher than a chair or couch, but if the way was left clear she would get onto the table for a snack. She would dip her paw into water, especially my glasses, and lick it off of her paw. She learned to go up the ladder to the loft bed I had for a couple years. And she loved being held, sometimes just dangling against my chest in the way Ragdoll cats tend to like.

The Collective Mentality of Playgrounds

Honestly, kids are the best. They’ve got the right idea of how to move through the world if we let them lead the way. (And maybe we can learn something from them.)

Take playgrounds, for example.

They individually go there, either by choice or coercion, but with the same idea and purpose in mind. Kids know that the point of playgrounds is to have fun and play until they are told it’s time to leave. They know that each kid is also there to have fun.

Kids don’t need to pretend like they are okay playing on their own or sitting and watching other kids. They don’t need to know someone in order to feel comfortable playing. A kid can walk up to another kid and just start playing with them. Either making up a game together or joining in a game in progress, it doesn’t matter and the play is fluid and ever changing.

I’m writing this from a park bench as I sort of listen to my kid play with two others. My kid brought a bag with some action figures and a harmonica to the park today. The interaction began by a little girl making a bee line for my kid as soon as we got there. She followed them up the play structure and said,

My name’s Elaine. What’s yours?”

That’s all it takes to make friends. Whether it’s for 15 minutes or 10 years.

Then a younger boy walked up to them and said,

Can I play with you?

The three of them began to play and a few minutes later, Elaine was called by her mom and was gone. It was a fleeting friendship, but kids know that’s how playground friends work. They might see each other again, but who knows.

Meanwhile, I’m on a bench, but not the same bench as the parents of the little boy. The mom went and got some chalk and is drawing something on the path. Part of me wants to walk over to see what she is drawing. Part of me wants to ask,

My name’s Jenn. Can I draw with you?

(Don’t worry, the kids went to draw with her and she’s making an octopus. I’ve got a book to read while I sit in the sun.)

(Un)Safe Spaces

I remember the first time I went to a gay bar. I was 18 and it was The Triangle in Flint, Michigan. I was there to see a friend perform in a drag show. I showed my ID and had black Xs marked on the back of each of my hands. I was nervous and probably overthought what I was wearing. It was January or February, so I left my coat in the car and hurried through the pot hole strewn parking lot to the door.

It was small, worn down, and kind of crowded, full of people who felt safe to be themselves within those walls. The performers knew that they were safe from criticism and the audience showed their support with applause, hoots, and dollar bills. The Triangle became a place I felt safe and I went there regularly for a year and a half. I knew I was surrounded by people with some similar experiences, which was not something I felt anywhere else.

When I moved to Chicago at age 20, I found more spaces like that. Bars, book stores, adult stores, cafes, all places I knew I could be myself without worry of insults or items being thrown at me. I say it like that because that wasn’t my experience in high school or at home, other places that people should feel safe. When I moved to Denver years later, I found these spaces there too. I frequented a gay country bar and learned to line dance and two-step. It didn’t matter who you danced with or dated. I thought of all of these spaces and the people who were there with me when I saw the news about the shooting at Club Q in Colorado Springs.

It is devastating for the loved ones of the people who were murdered, there and at Pulse. But it is also devastating for the community as a whole. These bars and clubs are our sacred ground and they have been since long before Stonewall. This is why Pride parades and protests began. They were needed as a way for us to be out in a large group, creating that safety in numbers, but in a public and visible way to fight for our right to safety in the rest of the world.

I have been to Colorado Springs once, but never to Club Q, so this is only personal in the way that an attack on one gay person is an attack on all of us. But, in 10 days it will be the one year anniversary of a shooting that was way too close to home. The Oxford high school shooting. Oxford is where I grew up. I lived there for most of 11 years and went to that school as an 8th grader. I walked those halls, I knew the community and the businesses. My childhood home is across the street from the shooters home. Too close.

When I lived in Chicago and frequented LGBTQ safe spaces regularly, I never worried that those places would be made unsafe by a person with a gun. My fear of gun violence was of just being in the wrong place at the wrong time on the street while commuting. I worried a little at Pride parades and dyke marches. I figured the worse anyone would do there I’d already weathered, like name calling and derogatory comments.

When I woke up this morning and checked my phone, I was shook to find the news of the shooting at Club Q. This is a hard enough time of the year for LGBTQ people, so please check on your queer friends and family members. See how they are doing, donate to LGBTQ organizations and individuals, put your money where your politics are and don’t buy from business that work to take away the rights of others, and support your local LGBTQ owned business. Vote in ways that will help prevent more people from being unsafe in their safe spaces, be it a religious building, a school, a grocery store, or a gay bar.

*Edit* I have become aware of a fundraiser that will be working to get the money raised directly to victims and victims’ families. Please consider donating to this or another fundraiser or LGBTQ organization.

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!

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.

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.

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?

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.

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.

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.