Hike It

We live near a small nature preserve and used to regularly visit it for hikes and classes. The classes were canceled due to the pandemic and hikes weren’t going to happen because my left leg has been declining in function for a year and a half. Last fall and this spring, the best I could muster was taking Wallace there to ride his scooter or bike (on designated paths) while I sat and read.

But! I finally got my orthotic at the end of June and now I can walk! I still have chronic pain and fatigue, but walking is now a more fluid and less exhausting process thanks to the orthotic. As soon as he got back from his week stay with my mom, we went out to the nature preserve to try a mostly flat hike together. It felt so good to move my body and be out there with him finding lots of cool things. Unfortunately, I did not get pictures from that first hike because I was wearing leggings, in order to have a thin layer between my leg and the orthotic, and did not bring my phone. I don’t know how long we hiked but it was mostly flat and shady.

We saw: multiple types of fungus, a few rabbits, a mourning cloak butterfly, an extended family of snails, a tiny emerald green tree frog perched on the top of a plant, many cabbage white butterflies, two painted lady butterflies, and an oriole. We also saw a person and got to talk with them about the fungus they are studying. And we played two rounds of Pooh Sticks.

The next day my plan was to take it easy at home, do some of my PT, as well as wash dishes and play some games with my kid. But as I was eating breakfast I saw a post on Facebook from the nature preserve about a butterfly hike. It was for the North American Butterfly Association’s yearly count to monitor butterfly populations. Wallace was down for it so as soon as we got done with lunch we headed over.

It was a lot of fun and we meshed well with the one other family that showed up. This time I wore jean shorts so I had a pocket for my phone and I took a few pictures. We counted over 80 butterflies in about two hours of hiking at a decent pace! The hike ended up being about two hours long as we toured the various habitats at the preserve in order to see a variety of species. We had a lot more sun than I had expected and I traversed up and down inclines for the first time.

It was fun, but I was completely wiped out after, plus minor sunburn on my shoulders and a few mosquito bites. I could barely function when we got home so we rested, had frozen dinners (Wallace thinks this is a huge treat as fast food isn’t an option due to my Celiac disease and dairy intolerance), and watched a Thomas the Train movie. It felt like every bit of exertion, physical or mental, sunk me deeper into exhaustion. I was very easily irritated by light, sound, touch/movement, and smells, more than my usual sensitivity.

Today I will for real take it easy, especially since it’s going to be in the 80s and the humidity is already oppressive. We plan to play the Pokemon Trading Card Game, make some Lego structures, and hopefully cook a yummy dinner.

Early in the hike. They were enthusiastic with that net and did managed to catch one butterfly so we could ID it.

This type seem pretty common.

I’m hoping to find out what these were. On a steep hill near a creek with lots of shade.

This fallen tree has really started to decompose the last few years! It is a favorite of kids for walking along.

A Greater Spangled Flitterary that I spotted by the butterfly house after the hike.

Brain Squeeze

When I was starting to learn about Chairi malformation, I found myself on YouTube. I have watched all kinds of videos from medical lectures to descriptions of surgery to physical therapy ideas. What I clung to the most were the videos of personal experiences, and I didn’t find many of them.

So I took the leap and decided to make my own channel. I wanted a record of what I was going through, a place to vent the rollercoaster of emotions, and possibly a way to connect with others. Just like this blog has been for almost 10 years.

If you’d like to watch my rambling, unedited, far from professional videos about my experience with Chiari, migraines, brain surgery, and mystery health conditions, please go check out Brain Squeeze and give me a follow.

Poofy CBD Sale!

Today, April 20th 2021, all Poofy CBD products are 15% off! No code necessary. The sale is until 11:59pm EST 4/20/2021.

If interested, please check out my affiliate link and ask me any questions. I’ve used the basic and night CBD oil blends for myself. I’ve also used the basic blend to help my cats. I’ve used the CBD cream to help with nerve main in my wrist and low back.

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Birthday!

Last year, Wallace’s birthday party was delayed due to him and me being sick with something. I was told it was influenza A but it lasted me many weeks and I was very easily fatigued. So maybe it wasn’t the flu.

Anyway, he got to have a 7th birthday party with friends and I was so grateful for all the help from my friends. Just a week or so later, the state issued stay home orders. A year later and we could have an in person party, but it’s not worth the risk.

Wednesday was Wallace’s birthday and he woke up to the house decorated and a treasure hunt for presents. I totally overdid it physically putting up the decorations and felt terrible from it, but it turned out great and he loves it. The treasure hunt was easier to set up than I thought it would be. It was a little tricky for him but he did his best and now will get the idea for next year.

Decorated chair and the start of the treasure hunt.

I had planned on simpler decorations but my dad grabbed a bunch and so I went all out. There were things I didn’t put up because I ran out of steam. He said the streamers over the door startled him in the morning and he has been calling it Medusa.

Medusa!

The lights have been up since December and made a good place to hang more decorations.

In the morning we hung out and he played and my dad sent a message via Marco Polo (he had come over 2 days before). Then my mom came over, with presents, and there was more playing. She brought cake pans and a mixer and I managed to make his cake and frosting. It was a box mix but it was a lot of work for me and it was good my mom was able to make sure I didn’t burn it.

Gluten free funfetti with dairy free butter cream frosting. Had to have sprinkles too!

Right when we were about to cut the cake, the neighbor boy came over with a bag of presents and a balloon. Wallace tried to run off across the street to play with no shoes on (it’s been a week of false spring). I got him to come back, have some cake, and put his socks and shoes on. I sent some cake to the neighbors as well. I also had the chance to ask him some birthday questions, which I should write up as a separate post.

While he was out I called and ordered dinner from our favorite Thai restaurant. I had planned to get him pizza but he surprised me with a request for drunken noodle. Even though the staff weren’t ones we know well, when they found out it was a birthday dinner for a kid, they comped his meal.

Today we are going to attempt a virtual hangout with friends and family. It will be good to see people we haven’t been able to much in the last year. I also managed to make his birthday shirt and a new W shirt. He wore his 7 shirt the 3 days before his birthday and now the 8 shirt will probably be worn until I tell him he’s gotta change.

The Meaning of This

I want to write. It feels good and helps me process things. I just don’t know what to write about or how to really get back on here and make it consistent in a way that works for me.

I don’t want to just vent or recount specific days or activities. I don’t want to write for an audience or limit myself in some way. But I do want to get back to recording our adventures and having a place of my own to hash things out. I have posted a lot over the years on Instagram so that has turned into a sort of journal, but I’m limiting my time there now so as to not be on my phone as much.

I can manage about 10 minutes of a puzzle before my arms and neck fatigue.

Right now my life is pretty consumed by medical stuff, basic homeschooling, and the day to day grind as a single parent. Each day blurs together and some are very painful while others are all about appointments. The repetition of figuring out what to eat, nagging about school work, what cleaning I can tolerate, and the bedtime battle. We’ve been in isolation for almost a year.

This time last year, I was still recovering from what I had been told was influenza A and had to move Wallace’s birthday party out a week. I was supposed to have had Chiari surgery the end of February but it was moved to April because of my illness (and then canceled due to the pandemic). Now, I’m planning for surprise birthday decorations and a virtual hangout party.

I don’t have any life goals because everything seems unattainable. So I feel unmoored and confused. School is on hold for me, but I was able to complete a class from fall of 2019 that had an incomplete. I’m just trying to keep us in our apartment and maintain some normalcy. We have food assistance and some cash, Medicaid, and a program to help with utilities. I’m applying for SSDI, but it’s a long process, made longer with the pandemic, and I’m pretty much guaranteed a denial the first time.

Waiting for my neurosurgeon.

I live in an area with few specialists and can’t manage to drive far due to the extreme fatigue. I need specialists willing to figure me out, not just for my disability application, but because I am declining quickly. Appointments are also hard because of the lack of childcare help. My dad has been able to help with a few, taking Wallace for a couple hours, but they both have to wear masks.

Maybe I need to figure out little goals that will make me feel like I have a direction and a purpose. But besides the daily grind and doctor appointments, I’m at a loss.

My Mug Cake Recipe

I started getting into making mug cakes when Wallace was a baby. I’ve tried many versions I found online that met various food needs I’ve had over the years. I’ve finally settled on a recipe of my own that is relatively easy and has been turning out consistently good for quite a while now. This recipe is vegan and gluten free.

A few notes: The only thing that should take individual adjustment is the microwave time. I am not a food blogger so this is all very utilitarian. Because of the brain fog I deal with, I find it easiest to have the ingredients written in the actual recipe as well as in list form. I freeze my aquaphaba in a silicone ice cube tray and start by melting rwo cubes in the mug in the microwave, swirling it occasionally. I have found it turns out best if I get it cooking quickly as

Ingredients

• 2 Tbs aquaphaba (about)
• Dash of vanilla
• 2 Tbs Bob’s Red Mill gluten free 1 to 1 baking flour (this is the only flour I have tested it repeatedly with)
• 2 Tbs sugar
• 2 Tbs raw cacao or coco powder
• 1/8 tsp baking soda
• 1/8 tsp baking powder
• 1 Tbs chocolate chips (I use enjoy life regular or mini)

I took the picture after I made it and forgot to get the vanilla back out.

You will need a mug, tablespoon and 1/4 or 1/8th measuring spoon, a fork, and a microwave.

Recipe

1. Put 2 Tbs aquaphaba and a dash of vanilla in the mug. Swirl.
2. Add 2 Tbs each of flour, sugar, and cacao/coco.
3. Add 1/8 tsp each of baking soda and baking powder.
4. Mix it up really well with a fork.
5. Add 1Tbs of chocolate chips and give it a little mix.
6. Microwave for 30 seconds at a time until it is set. A minute and a half would probably be the maximum time needed.

Now that I have perfected this one, I should probably try to make some other flavors or combinations.

YouTube Update

After getting diagnosed with Chiari Malformation in November of 2019, I started a YouTube channel. It’s called Brain Squeeze! I was searching for firsthand experiences on there and there just weren’t many. Because my surgery was postponed twice, there are lots of videos of me in the car just rambling about the latest appointments and updates and anxieties.

Those were the good old days when Wallace could go to school and I could go to the local café and work on my school work!

Because the fatigue has gotten so much worse since surgery, I haven’t updated much in months. I also haven’t had the ability to work on editing skills and making my videos a little more polished. I am trying to at least get decent thumbnail pictures, but even that is a bit too much to work on.. Oh well… It is what it is!

A few nights ago I made a rambling video with my basic medical related updates. It’s long and unedited. Then I made a video last night when I tried RSO for the first time. I was going to do another tonight but I overdid it today and the kid is taking forever to fall asleep. I’ve already taken my dose and just want to curl up with my cat and a book and rest.

I’m open to suggestions on what I should make videos about and always down for information on how to easily better my videos. So far, my most popular video is the one I made about what to pack for surgery. I’m always particularly proud of the very short one I made in the ICU the day after brain surgery!

Coming Out-iversary

The only significant thing about today’s holiday is that 20 years ago at my first high school’s Valentine’s dance I had an epiphany.

To set the scene, I was supposed to be on crutches for my millionth sprained ankle and my hair was growing out awkwardly from having shaved it the year before. I was a wearing a long black satin skirt I had made that fit perfectly and accommodated my knee high black boots. My top was maroon, also made by me (and my mom) and not so well fitting.

I went with a group of friends, a few in relationships. Only a couple people I knew at that time identified as LGBTQ, but many more from my friend circles (or Venn diagrams?) came out within a few years. It was good having a bunch of friends together so it wasn’t just about having a boy/girl-friend. Our school was small, physically and student count wise, and it was for all grades.

There was one kid I didn’t really know who kept trying to dance with me and a few other girls. He wasn’t really part of our friend group and was at least a grade above me. He was persistently trying to cajole me to dance with him and I was getting ready uncomfortable.

My tactic to avoid him had been to always have a friend to dance with. Occasionally I would head with friends to the bathroom or take a break and lean against the wall with my crutches. At one point when I had been taking a break, he found me. My friend Ryan was in the bathroom and unable to save me this time!

I had no escape and headed out to dance with him. Of course that’s when a slower song came on and he tried to pull me in closer. As his hands moved down from the small of my back, I looked over his shoulder and saw two girls I knew (in that friend Venn diagram) slow dancing and then kiss.

It hit me… I like girls!

The next bit is less clear in my memory, but I escaped from the creepy guy and ran off to my friends to explain my realization. I definitely got emotional because somehow this was unexpected to me. Of course all the signs and internal dialogue was already there (this could be another long post altogether).

So every Valentine’s day I celebrate the anniversary of the beginning of my self realization. My friend group, lead by one of the girls who kissed, started the Gay Straight Whatever Alliance at our small school. Many more of us came out over the years and I gained greater understanding of myself. It hasn’t been an easy journey but it’s been meaningful. It’s cliche, but I can’t believe it’s been 20 years.