Micro Update: Tongue Tie

I have so many things I could write about, that I need to write about, to process and find my footing. But that’s all too much, so here’s my micro update. One step at a time.

In one week, I am having my tongue tie lasered. I have so many worries and concerns and fears, but I am solid in my decision and that this is the right time. I have had increasing neck pain and now have MRIs to show some of what is going on. Between hypermobility, neck trauma, and constant tension from my tongue tie, I have increasing neck pain and migraines. I want to try all the things that I can before neurosurgical intervention, so this is right now.

It is a minor procedure compare to many other things, but it’s my mouth, which I use all the time. I talk, breathe, eat, kiss, and I am worried about how this will all change when that tissue is released. There is a chance my tongue tie is contributing to the sleep issues (I am getting a sleep study done soon), the neck pain and migraines, the body pain, the digestive issues, the brain fog… on and on.

I have been dismissed by multiple doctors and dentists and though I found the one I am seeing a bit lacking in kindness and compassion, she did not dismiss me, connects all the dots, and is very knowledgeable. I don’t think she would do it if she didn’t see the issues I see. She also thinks my residual lip tie, it broke when I was about 13, might also be worthy of a laser.

She would have done it then, but prefers to have me do some tongue exercises for two weeks before the procedure. There will be more stretches and exercises after as well. These ones consist of sticking out my tongue and wiggling it around in different formations. Flattering and challenging! The exercises have also made my mouth and neck more tense and might have contributed to some more neck pain and migraines this last week.

I could go on and on about this, having learned so much when going through it with Wallace, but it’s late and I need to wiggle my tongue once more before going to bed.

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A couple weeks ago, we were shown how to find monarch eggs by some friends at the nature preserve class. We have tons of milkweed in the undeveloped area around us, so when we were out for a walk, I started looking. Yesterday, I found 3 likely eggs! We went home and watched some videos on finding and taking care of monarchs.

Today, we went out again, but had no luck finding eggs. We did find two monarch caterpillars that look close to the next stage, and one super tiny one. Wallace feigns interest in searching the leaves with me, but totally slacks.

We are excited to do our best to increase their chance of survival! It’s a fun process to learn about and witness.

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MicroBlog Monday: I Made It

I have been sewing since I was a young child. I love sewing for the relaxing and problem solving aspects, but also for the creating things with my hands aspect and finished product. I don’t get enough time to sew for fun, for myself or my kid or friends, and often feel like I am craving that creative space and time.

I’ve been quite stressed out dealing with potential diagnoses and the last project I made was a tad stressful in the form of a tester and a memory bear for a friend after her dad died. So, I needed some stress relief sewing!

I saw this great tie dye shirt at a thrift store recently and knew Wallace needed a new pair of grow with me acro-pants. It took a while to find the time in my days, but I’m quite pleased with them, and so is Wallace.

Front side with the cuffs all folded.

Back side with the cuffs opened.

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Stump Kitchen: Chocolate Chip Cookies

Wallace and I are huge Stump Kitchen fans. (What we lack in size we make up for in enthusiasm.) We want to be on Stump Kitchen one day. I would pass up on Ellen if it conflicted…

What?! You’ve never heard of Stump Kitchen?!?!

Check it out!

It’s a great little cooking show on YouTube. But it’s more than that. It’s funny, queer inclusive, usually kid friendly, all about finding and celebrating abilities, and gluten free and vegan. Amazing! I believe I found it through the Lucky Fin Project, which I found through a fellow queer parent on Instagram who I met through a group on Facebook… as you do.

Anyway, we love Stump Kitchen and watch for entertainment and cooking ideas. Sometimes, when I’m feeling blah, I just watch it to make me feel better. And it works. Alexis, the host, has a range of guests from people with limb differences, to cute little kids, to fun queer folks, to people in her community who clearly are awesome. Then, they take over her tiny apartment kitchen, make a mess, have a laugh, and eat something new or different or just plain yummy.

Wait! This post has a point besides fan girling.

Wallace requested Stump Kitchen while he was sick last week and wanted to watch dessert episodes. We found this great cookie recipe and decided to give it a go today. We had all the necessary ingredients, but substituted brown rice flour for the oat flour since my body no longer tolerates oats. It sucks.

So here’s how it went:

Rewatching the video while I worked on cooking lunch.

Secret ingredient

“Blend it up! Blend it up! Blend it up!”

I couldn’t fathom processing the chips in so I took the blade out and Wallace mixed them in.

One heaping tablespoon each. I think our dough was a bit different due to the change in flour.

Huge! Went well over the recipes time, definitely at least 25 minutes.

Intermission while they cooled.

Had to build up an appetite after our big lunch.

Giant cookie and almond milk.

We ended up having two! Perfect amount of crispiness on the outside and nice and tender inside. Not too sweet and pretty filling.

This chocolate chip cookie recipe was definitely a winner and we will be making it again. And we will watch more Stump Kitchen episodes, too!

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“Here’s looking at you, kid”

I’ve been looking at pictures of my brain and neck, pictures of other people’s brains, and reading all the things I can about all the things people noticed in my MRI and symptoms.

It’s a lot. I’m having trouble processing it all- intellectually and emotionally. I’m fumbling.

So here’s a reminder of what I look like on the outside and my amazing child who doesn’t doubt me for a minute.

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Head On

Yesterday, I had an MRI done on my brain and neck. It’s been 15 years since I’ve had one and it’s because of someone mentioning a condition in a YouTube video that I have put forth the effort and energy to, yet again, try to get doctors to take me seriously. I have had migraines my entire life, but things have really taken a turn for the worse the last six years and the last year or two has been a series of wake up calls in regards to my health. That one mention of a condition lead me down a rabbit hole of information, fueled my insomnia, and got me out there advocating for myself. Finally.

So yesterday evening, I logged in and looked at images of my brain. It’s there. I have one. My mom made sure to make a joke about that. But there have to be clues hidden in those pictures that the radiologist didn’t find. A little message hidden in my brain, waiting for me to find. (A little Douglass Adams joke hidden in my blog.)

But instead of it being noted in the report, it was pointed out by people who live these things daily in a Facebook group. They aren’t there to diagnose me or tell me what I should do. They are there to encourage me to keep going and to get another opinion. They are there to validate the experiences I have lived with for years and do my best on a day to day basis to pretend like they don’t exist.

I’ve got an email out to the office of a specialist in hopes they will now see me, now that I have imaging in hand. I knew before seeing the neurologist that many radiologists miss these things and many doctors don’t diagnose and treat them. All of my images were looked at in under 20 minutes. From the time it took me to go upstairs, sign in, and get my blood pressure taken, one person decided my brain and neck have no abnormalities.

It’s scary because it’s my brain and because surgery is sometimes the solution for people with the conditions I want to be assessed for. But it’s just as scary to continue to not have answers and to continue to get worse. I’ve tried to talk about these things minimally and have only said the words outloud a few times. Like if I say it, it gives it power and makes it more real. (Or if I say it, it might make people think I’m crazy and making things up.)

I have also been seen by a rheumatologist and had blood work done. I was less than thrilled with that experience and will be switching providers in that office. My next appointment is over a week away and I’m back at square one hoping they will hear my story and see me as a person and not a number.

I needed to write. I feel raw and tired, but okay. I can’t dance around the tough subjects in my life. Facing things head on works best.

*Update: Neurosurgeon’s office called me back and I have an appointment set for August 20th. I have a few hoops to jump through to get everything ready for it. I also got a call from the rheumatologist’s office and they had to change up my appointment, so it is now two weeks away. I also had two people give me lots of feedback on my MRI, which gives me a lot to read and take in.*

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MicroBlog Monday: Friends

At preschool last year, the teachers called all the kids friends. I thought it was cute but also noticed it disregarded the fact that some kids weren’t friends yet or weren’t going to mesh that well. No one, child or adult, has to like and befriend every person they come in contact with. We need to be polite and considerate and work together, but we don’t have to all be friends.

When kids meet for the first time at playgrounds and in public ways, they become instant friends. There is no conflict, but immediate adventure. It might last 20 minutes or consist of hours of fun. It might be just the one time and they never see each other, or they might cross paths again and become more than playground buddies. I remember a little boy I played with at a park when I was maybe 8 or 9. He was probably younger than me, I was really small, and I believe he was Chinese and didn’t speak English. We just played and none of that mattered.

Sometimes, a friend of a friend is not your friend. Maybe you disagree on some big issue or just don’t jive. Maybe you make do at functions but don’t seek them out on your own. Is that being fake or just being a good friend to your mutual friend? Maybe they try to exclude you or others based on perceived gender or other traits when all you want to do is collect flowers and run around with them.

Friendships are multifaceted and ever changing. They are instantaneous, just add sunshine, or take a long time to develop with lots on insecurities and ups and downs. Some friends, I’ve never met in person and some I could see daily and not get irritated with them. Some fade over time or there’s a rift that forces us apart. Some stick in my heart and mind and I wonder about 20 years later.

But, for now I will revel in new friendships, growing like dandelions in spring. That instant connection that flourishes on trust and reciprocation. Hands held, conversations had, gluten free rice cakes shared.

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