The Last Week

Two days into having an 8yo and we were headed to the ER. Again. Between the two of us we have had 7 ER trips and two surgeries in under a year. All during the pandemic. I’m over it!

This time he bashed his head into his dresser, possibly into a metal handle, while running around. He was supposed to be getting dressed but listening to directions has been a struggle. And he hasn’t learned from that accident yet.

He wore the gauze crown for a few days as a cushion and a reminder.

Anyway, the ER trip was not fun for either of us. The numbing gel didn’t work and he felt the staple going in, which then had to be removed and done again. So more bleeding and crying, which lead to me feeling faint and hot and having to lie down.

We had to reschedule his virtual birthday hangout to the next weekend and it was nice to see some friends and family. Only a few people made it but it worked and was fun. But I completely wore myself out over the last few days and we need to get the decorations down. I pushed myself too hard putting them up, so I’m going to have help getting them down.

Oh. And the staple is out now. That was also a dramatic event. The urgent care I called said they could do it and when we got there they couldn’t find the tool. The doctor decided to go for it with scissors and tweezers. This caused screaming and blood and I got faint and hot and had to lie down so as to prevent my own head injury. The doctor didn’t have gloves on and he slathered on antibiotic ointment before I had a chance to stop him. Because oil in his hair is a pain to get out! Oh well. The staple is out now and I need to find the energy to wash his hair today.

Found this big flat rock outside the urgent care.

Meanwhile, I’m on another round of doctor appointments. I saw a new neurologist Friday and it seems he is going to be the detective I need and figure out what is wrong with me. We did an EMG on me left leg, he tested my reflexes and strength, and asked some questions. I am really weak and getting worse. The more I do, the weaker I get. He ordered some blood work and I am anxiously waiting an email with the results while looking up all the things this could possibly be and then not falling asleep until after midnight…

On Tuesday, I see a Pain Managment and Rehabilitation doctor through a big university. This referral came from my neurosurgeon and I asked for some recommendations in local groups. It’s been weird going into both of these appointment blind, not knowing anything much about the doctors or what the plan is. I just hope they are willing to be part of the team and help me figure this all out. Not to be dramatic, but it feels like I’m racing the clock.

In other news, I got my taxes done through a low income program at a local university and I downloaded Pokemon Go for us to play while we waited. I am having a hard to grasping what things mean in it, but hopefully Wallace will lead the way. I need to figure out how to play it without using all my data or exhausting myself walking around. If someone reading this plays it and wants to connect, let me know!

One of our first catches!
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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.

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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.

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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.

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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!

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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.

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Talking to Myself

When I started this blog, almost 10 years ago, I did so as a place I could hash out my thoughts and ideas. I could have kept a private journal but figured maybe I would connect with other single parents by choice, and I did. I rarely to never shared the link with people I knew in my personal life. Friends, girlfriends, family… nope.

I needed a place to be me without that kind of close contact judgement. I needed a place to talk things out, the verbal processor that I am, but not with anyone I know. Sometimes feedback and interaction is a good thing and this was before Facebook groups. But I really just needed to write it all out.

After, finally, being diagnosed with Chiari in November of 2019, I’m not sure why I didn’t come here again because anytime I reached out to people about the emotional impact of my symptoms, the diagnosis, and the impending surgery I got shut down. Most evenings I sat down at the computer and tried to get school work done but ended up either crying or researching Chiari and crying. If I reached out to people via text it just didn’t feel like a real connection and I didn’t feel heard or understood.

Now with a year into this isolation (I had 4 illnesses in January and February of 2020 so we were basically at home before stay home orders started here) I find myself choosing not to reach out to people as much as I had been. That grasping and feeling stuck thing happens and the cycle repeats. Pulling back from social media has helped a lot (and with getting myself to bed on time!) but I think what made it sink in the most was starting to write things out on here.

I will let connection come to me and keep writing here. It doesn’t mean I’m not going to stay in touch with friends, but yearning for that constant interaction, especially in the evenings, isn’t good for me. It’s about learning to be alone with myself, not some kind of depression or desire to shut myself off from people (I’m super extroverted and will risk a huge energy crash in order to get the deeper rush of social interaction).

Here’s an example of a cycle of this “what you seek is causing you to seek.”

I kept thinking to text my dad today and tell him a random bit of a dream I had last night. I know it won’t matter to him and he possibly won’t even reply. I stopped myself from texting him because if I do and I don’t get the genuine connection I crave (I don’t think I actually need it) then I feel unfulfilled and keep reach out to someone else. Then I feel unfulfilled and keep reaching out. Etc.

And it’s not like I didn’t interact with anyone today. Wallace is in my face pretty much all day. I had pleasantries with the lady at the grocery store who brought out my order. I chatted with some people on a group chat, all fellow chronically ill folks. I got to snuggle my sweet Alice. I had a short call from a social worker. And a friend and I texted about coconut (I’m still in shock).

This is different than when I realize a friendship is one sided and stop initiating contact with them. This is just me learning to be okay with not “seeking.”

Just a winter view as a break in the text.

The relevant bits of the dream: I was on a long dock and there was a slow river, maybe 3ft deep. I don’t know why, but I had my oversized Wheatland hoodie on the dock a few feet from me. The wind picked up and it somehow lifted it off into the water where it quickly went across to the other side and headed downstream to my right. At the same time a funeral procession was headed on foot up stream to the left and it passed right by them. I yelled asking someone to grab it because I really love the sweatshirt (can’t say I’m that connected to it in real life), but no one would stop whatever part they had in the funeral procession and pluck it out of the water.

I don’t ascribe much meaning to dreams and only wanted to tell it to him because of the hoodie he got me being in it. There were other things in the dream and lots of random details but I can’t recall any plot now. It’s just weird what things stick out in dreams and can be remembered so many hours later. Sometimes even days and weeks, which can be a bit creepy.

That said, I am 100% down for social interaction. I’m quite bad at limiting myself when I don’t have the energy for it, but I always reply to emails and texts and answer my phone when my one friend who is weird like that calls me (only joking, phone calls are great). It would be so interesting to see who is out there reading and not just following me randomly.

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Bedtime

I’ve always been pretty good at a bedtime routine for Wallace. And pre kid, which was pretty much pre internet in my pocket, I was good at my own bedtime routine. I loved snuggling up with my cat and reading a book, sometimes watching a show or having a treat first. But now, between single parenting, winter, pandemic, and all my medical stuff… I seriously suck at going to bed.

Nina was my little spoon and the best cuddler. (She died three years ago and needs a post of her own soon.)

For a bit there after surgery, I was on a roll! But I was also recovering from brain surgery and on lots of medications. I’ve tried a number of times and ways to get my bedtime on track, including alarms and dimmed screens and lights and sleepy tea, but nothing has helped. Instead my bedtime sits solidly after midnight and my wake up time was creeping past 9am.

Wallace likes his little bit of time to himself in the morning, so it hasn’t been a problem for me to sleep in, but with the chronic fatigue it’s really hard to get up and get moving in the morning even on good days. And it’s not like I’m doing anything important at night after he’s in bed, like back when I’ve had online college courses. I just have to buckle down and make myself go to bed.

Sometimes I just feel too tired to get up out of my comfy recliner and get ready for bed. (And nope, I can’t sleep in my recliner, tried it.) I’m on night three of getting as ready for bed as I can right when I get Wallace to bed, before settling in myself. With a book and limited screen time, snack if I need, but mostly just tea, and my electric blanket and kitty. At 10pm, my phone goes dark as a reminder to turn off screens and feed Alice. Then at 10:30 a bedtime alarm goes off. But that rarely makes me actually go to bed, ha.

Sweet Alice on my electric blanket. She hasn’t yet slept in the bedroom at night so this is our cuddle time.

Besides feeling like I have no quiet time during the day, I also feel quite isolated, especially now. Most days I just have my kid for conversation and a person can only take so much potty talk and Ninjago adventures before losing it! So if I felt like I didn’t get to connect with any friends or peers during the day, I tend to frantically try to do it during my quiet evening. Then I just want to stay up texting, which leads to googling tangents, or, if after midnight, some pretty deep topics.

But I’ve just now tucked Wallace in bed and am getting myself set with my tea and melatonin and some not too stimulating entertainment. Alice is already snuggled in the recliner waiting for me. So, here goes night three!

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Book Tracking

I decided, over a month in, that I should keep track of the books I read for the year. It’s been many years since I’ve done it and not only is it nice to look back on, but with my memory it’s the only way I will remember what I read. It might be good for Wallace to be able to look back on too, and he’s on the verge of reading chapter books himself soon.

Reading to himself! He loves books and is really taking off with reading.

I have been managing to read some for myself in the last year, but not as much as I once was able to. After surgery, I started with some graphic novels to be a little easier on my eyes and less daunting. I had managed to finish The Princess Bride right before and it was a great distraction at bedtime when my anxiety was through the roof. I read it once in high school when they put me in a remedial English class to give me an easy passing grade when life was a mess. I also had read all the books the other classes taught and this one there were some I hadn’t read yet. Anyway, I should wax poetic on Princess Bride another time!

Most of our picture book collection, minus the ones in the garage that are pre 1986 (lead risk). There are early readers behind the doors at the bottom of the shelf.

I decided a page will be the best way to track books, so I created it here. I split it into me, chapter books I read to Wallace, and picture books. It might also motivate me to finish books or read more than just small sections in nonfiction books to him. We always have an audio book going, which we listen to while we eat or if I’m stuck in bed with a migraine, so I’ve noted those in the list. We use Overdrive and Hoopla to listen to free audio books on my Kindle, but when we used to drive places we also use CDs in the car.

I hope to diversify our reads even more this year and I’m always open to suggestions! Also, we do a lot of discussion around the books we read and sometimes pull up videos or read about the history and facts surrounding the stories. For instance, we both really enjoy the Little House series but they only tell the story from one side. I was very excited when I found the Birchbark series and it has opened up more discussion on the experience and perspective of Native Americans.

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Fatigue

Watch the TED talk or the movie Unrest by Jennifer Brea. It’s hard but it’s a glimpse into what I deal with and more people need to be aware of the severity of ME/CFS. Or even that it’s a real thing affecting millions of real people. Everyone in the movie has it way harder than me but my symptoms have multiplied rapidly since Chiari surgery in June of 2020, 5 days after my 35th birthday, 7 years of slowly deteriorating while being ignored. Thinking this is just what your body does when you approach 30.

I watched her movie not long before surgery and figured I probably don’t have what they have because I was doing okay. I could ride my bike still even if I could no longer source and sell used books. Now I’m pretty sure it’s what I’ve got, one of the things I’ve got. I’ve at least got a doctor willing to refer me and a neurosurgeon who is going to keep working with me.

Here’s what I wrote after watching the TED talk. After wiping my tears (because crying is not good when there’s high brain pressure!)

Those Facebook memories are so hard to see. This was probably 10 years ago.

I used to bike 15+ miles a day, nanny for multiple families, go dancing with friends, write and perform poetry, and do hot yoga. I was a veritable ball of energy. I even once did 107 bikram yoga classes in 107 days. I did a triple to make up for a few days I missed. Today, I managed to wash a few dishes, work with my kiddo on his school work, feed us, read a little, and sweep the floor even though walking is hard. A shower or driving the car can wipe me out for hours or days or trigger a ton of pain or take away my ability to walk. It will feel like I can’t move even to lift my head, my legs and arms feel like they are being crushed in concrete, and noises, smells, light, and vibrations completely overwhelm me. Then there are the migraines, poor immune system, unrestful sleep, issues trying to say words or pull together complex thoughts. I’m a shell of who I used to be. Well, I’m still me, full of life and ideas and aspirations, but I’m stuck in this shell of a body.

Last week after a shower. I somehow got dressed and made it into my bed, but holding my head up and using my phone were excruciating.

I wouldn’t know how to keep trudging on if it weren’t for the internet and people like Jen. Someone asked me recently where I get my drive from and I of course made jokes. I can joke when in the ER with a level 10 migraine. I joked in the ICU hours after brain surgery. But in all seriousness, I don’t have a choice. It’s not a choose-your-own-adventure, but I’m gonna make it to the end of the book somehow.

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