Clearly I was wrong about not writing anymore. I still need somewhere to dump about the peanut butter anxiety dreams I'm still having. And even our new normal of pain, anger, and tears needs crunching through and processing. I have acknowledged that this is where we are, we have moved in, but we're still painting and unpacking I guess. Moving always sucks, even if you're good at it. Below is my brain dump from Tuesday.
"Today Sasha cleaned her room until she started throwing up a little. It really was only a little compared to yesterday. Or was it the day before? It's probably in the migraine journal or the bullet journal but really, Sasha puking is normal. She wanted to keep cleaning but I made her stop because puke means her head is not cooperating as much as it can.
Emily is having trouble yesterday and today thinking clearly and remembering things, like why she came into a room or what I just asked her to do exactly one second ago. But I made her do part of a practice test anyway bc testing is in April and I want to make sure she is doing all the grade appropriate work and we're not missing anything. She's always been fine with testing, it has never been an issue. But she does cry and wail when she has to do any work of any kind with a migraine, which is unfortunately most of the time. So I literally held her in my lap while she cried for maybe an hour and did practice test questions until Sasha needed attending to. Then Emily cried when she didn't know what to eat for lunch and I made her eat something, because not eating can trigger more migraine. God, it was awful, the noise. I mean, and the fact she was suffering, obv.
Friends came over for about an hour and a half this afternoon. I considered calling it off bc Sasha's head was already hurting, but she begged me not to. It was a lovely visit we all enjoyed very much, but by the end Sasha was definitely feeling it. Then her pain kept increasing until she took all available meds, a rare second 1/2 cup of coffee, used heat and ice packs, essential oils, had a massage, and watched cartoons and a movie until 9:30pm when she was comfortable enough to sleep, thankfully. She said her pain was only a three, but she was crying, it hurt so badly. She was still able to talk through it although not easily, so I'm saying this was a solid 6. She wasn't holding her head, pacing, and mumbling incoherently so it's definitely been worse.
And honestly except for the friends over and the second cup of coffee, this was a pretty normal day. Vomit, tears, and symptom management. And science, bc we learned why bumblebees squirt water out of their heinies."
Today has not been quite as dramatic. Sasha was in pain this morning, accompanied by one of her main emotional symptoms, anger. We smelled oils, she did Cefaly, we watched My Little Pony, the usual. We all decorated our new art journals. Then the girls wanted to play in their room. I called them out to watch a 20 minute art video from our new curriculum. I said we would just watch the video to see what it was about, not actually attempt anything yet. Em had a complete meltdown and wailed through 15 minutes of it since her other option was writing sentences.
Now, we had talked this morning about coping mechanisms and how we were going to handle the next crying fit, but hadn't really come up with anything. Sasha is at the point where she can tell me she's angry, she can draw a picture of it, and we can smell oils and get through it. Em is still at a loss. Maybe half an hour after she had calmed down she was able to write a sentence in her journal about what happened, so that is our progress for the day so far. I am comforted in that all these goings on are normal for migraine. We fly huge migraine flags and wear the migraine outfits and everything. Someday it would be nice to just have an awareness bracelet or something.
Thursday, February 23, 2017
Monday, February 13, 2017
Forwardheaval
Holy string of expletives Bat Man, what a shit parade. I haven't had crippling pain in quite a while, usually it's crippling fatigue and brain fog and stress. Oh, it just occurred to me that this doozy from hell was likely a let-down migraine, in combination with hormones and a dentist appointment. We (the neurologist) fiddled with Sasha's meds a few weeks ago since she was doing so well, to try to squeeze a bit more benefit out of them. She was on a fairly low dosage for her weight so I okayed the move. Two weeks later all hell broke loose. We lost the end of December, all of January and part of February to constant pain and nausea and minute by minute battling symptoms. Fucking absolute nightmare. I called the Neuro and detailed symptoms and general shit show along with dates and he agreed that the med adjustment might be behind it. Now that Sasha's been back down to her original dose for a while, she is vastly improved. She just had two and a half moderately good days in a row and I bet being free from constantly thinking of what intervention to try next was just too much for the migraine brain, so it exploded. Well, it's progress anyway.
In other news, I feel like I've been preparing to be in this position politically all my life. I started talking back to my uncles with I was 3, so no fear of standing up for myself against family even then. This has been helpful now with a trump supporting uncle and worse, standing up to the deep sexism that runs on that side. *shudders* In high school I took the most advanced English, Math, and Science classes they offered even though music has been my life's passion and payment. I assume these classes have helped not only with my ability to do basic research but also interpret data. I mean, I'm no scientist but I can sure as hell spot fake news. Sadly, a lot of those skills just go to toward fact checking friends on Facebook. READ, PEOPLE! And even the nearly obliterating disappointment of the first 14 or so years of my marriage was a pretty good preparation for what I can only describe as the gaping loss of so many friends whose hearts have become so clear in the past year and a half.
I'll never forget that first post from an old friend who was excited his new home state would not be accepting Syrian refugees. That really was a turning point, when faith turned to fear, or rather, I became aware of the extent that fear ran people's lives, and how much they were willing to be led by lies. It used to seem weird to me that christians were such a driving force of hate. Then they elected trump. *smdh*
And then the Southerners. I don't regret the time I spent in the South by any means. I feel like it has helped me personalize this battle for America. Just like any terrorist who only sees the world one way is still a human with a heart and feelings, deserving of consideration and empathy, so too are all the crazy folks who hate women, brown people, black people, gay people, sick/disabled people, or science. And just because they are worthy of consideration and empathy doesn't mean they shouldn't be absolutely opposed and stopped and protested and refuted by any and all possible means. I think it was important for me to learn first hand that otherwise awesome, loving, and giving people can be completely accepting of such heinousness. Thankfully not all Southerners. Present company excluded, I'm like, so totally sure.
I remember my dad telling me about the time he realized one of his best friends was racist. My dad asked his friend if he thought being white made him better than my dad.
My dad: "Do you think you're better than me?"
His friend: "Psh, of course I am!"
Totally serious, no big deal. Except of course it was then in the late 50s-early 60s, and it is now. My dad got treated differently by the police for being brown and thank God for the Black Lives Matter movement, because the problem has not gone away! My dad was a friggin boy scout who's parents had to sign a waiver so he could join the Marines when he was only 17, and he has only ever taught me to respect police officers. He was a Teacher and a Pastor but he would not keep silent about the harassment. I don't know but I think loving your country is like loving your kids. It means when you see flaws, you address them before they become an international problem. You do not turn a blind eye to their wrongdoing, that is not love. Many people have given their lives for this country, and it is incredibly shameful to piss on the statue of liberty in salute to their sacrifice and all it stands for.
Due to my glorious upbringing on the West Coast, I have only recently begun seeing how skin color and gender are such absolutely binding principles. I was on the youth worship team as soon as I could play the guitar, and I was that kid who was always used as an example. "We don't all have Charli's musical ability..." was a line I got tired of hearing. And yet, any time someone wanted to come and help out with the music, I got tossed aside. Man, having been a youth worship leader, that is inexcusable! That is not how you treat a kid musician just starting out leading. I was their last resort. Instead of being mentored and taught, I was called in when necessary and tossed when not, and not bothered with warning when things got canceled. Oh the things I learned not to do from that place. Later on we get this drummer, a white kid, a guy who plays super loudly. Again, having led music for years, inexcusable. And they would just let the white guy do what he wanted, because they were white guys too, and that is exactly how it works.
These are not battles I thought I'd have to fight, that my kids would have to fight. I mean, we are just finally getting used to being a special needs homeschool family! Oh God, I want a vacation. But even as a kid, our family vacations were spending two days each way in a car to visit my Grandparents, to help them take care of their house. Now that every cell in everyone's body is no longer screaming, we can get back to our regular insane workload instead of our insane, insane work load, plus calling the government to tell them to quit being assholes. Politely.
I don't think I even want to write anymore. This blog was a useful tracking tool when it hit the fan so many years ago, before I knew about bullet journaling. We had ingredients back then too, geeze. And while we do have successes, so much is harder. There is just so much more to deal with! Sasha's diet is more limited, Emily's diet is more limited, and they both have migraine now?!?! Maybe after Steven retires we'll get a better groove. Maybe the so called president will be impeached by then OH GOD PLEASE. God lift our burdens, and show us how you clothe the grass of the fields. Amen
In other news, I feel like I've been preparing to be in this position politically all my life. I started talking back to my uncles with I was 3, so no fear of standing up for myself against family even then. This has been helpful now with a trump supporting uncle and worse, standing up to the deep sexism that runs on that side. *shudders* In high school I took the most advanced English, Math, and Science classes they offered even though music has been my life's passion and payment. I assume these classes have helped not only with my ability to do basic research but also interpret data. I mean, I'm no scientist but I can sure as hell spot fake news. Sadly, a lot of those skills just go to toward fact checking friends on Facebook. READ, PEOPLE! And even the nearly obliterating disappointment of the first 14 or so years of my marriage was a pretty good preparation for what I can only describe as the gaping loss of so many friends whose hearts have become so clear in the past year and a half.
I'll never forget that first post from an old friend who was excited his new home state would not be accepting Syrian refugees. That really was a turning point, when faith turned to fear, or rather, I became aware of the extent that fear ran people's lives, and how much they were willing to be led by lies. It used to seem weird to me that christians were such a driving force of hate. Then they elected trump. *smdh*
And then the Southerners. I don't regret the time I spent in the South by any means. I feel like it has helped me personalize this battle for America. Just like any terrorist who only sees the world one way is still a human with a heart and feelings, deserving of consideration and empathy, so too are all the crazy folks who hate women, brown people, black people, gay people, sick/disabled people, or science. And just because they are worthy of consideration and empathy doesn't mean they shouldn't be absolutely opposed and stopped and protested and refuted by any and all possible means. I think it was important for me to learn first hand that otherwise awesome, loving, and giving people can be completely accepting of such heinousness. Thankfully not all Southerners. Present company excluded, I'm like, so totally sure.
I remember my dad telling me about the time he realized one of his best friends was racist. My dad asked his friend if he thought being white made him better than my dad.
My dad: "Do you think you're better than me?"
His friend: "Psh, of course I am!"
Totally serious, no big deal. Except of course it was then in the late 50s-early 60s, and it is now. My dad got treated differently by the police for being brown and thank God for the Black Lives Matter movement, because the problem has not gone away! My dad was a friggin boy scout who's parents had to sign a waiver so he could join the Marines when he was only 17, and he has only ever taught me to respect police officers. He was a Teacher and a Pastor but he would not keep silent about the harassment. I don't know but I think loving your country is like loving your kids. It means when you see flaws, you address them before they become an international problem. You do not turn a blind eye to their wrongdoing, that is not love. Many people have given their lives for this country, and it is incredibly shameful to piss on the statue of liberty in salute to their sacrifice and all it stands for.
Due to my glorious upbringing on the West Coast, I have only recently begun seeing how skin color and gender are such absolutely binding principles. I was on the youth worship team as soon as I could play the guitar, and I was that kid who was always used as an example. "We don't all have Charli's musical ability..." was a line I got tired of hearing. And yet, any time someone wanted to come and help out with the music, I got tossed aside. Man, having been a youth worship leader, that is inexcusable! That is not how you treat a kid musician just starting out leading. I was their last resort. Instead of being mentored and taught, I was called in when necessary and tossed when not, and not bothered with warning when things got canceled. Oh the things I learned not to do from that place. Later on we get this drummer, a white kid, a guy who plays super loudly. Again, having led music for years, inexcusable. And they would just let the white guy do what he wanted, because they were white guys too, and that is exactly how it works.
These are not battles I thought I'd have to fight, that my kids would have to fight. I mean, we are just finally getting used to being a special needs homeschool family! Oh God, I want a vacation. But even as a kid, our family vacations were spending two days each way in a car to visit my Grandparents, to help them take care of their house. Now that every cell in everyone's body is no longer screaming, we can get back to our regular insane workload instead of our insane, insane work load, plus calling the government to tell them to quit being assholes. Politely.
I don't think I even want to write anymore. This blog was a useful tracking tool when it hit the fan so many years ago, before I knew about bullet journaling. We had ingredients back then too, geeze. And while we do have successes, so much is harder. There is just so much more to deal with! Sasha's diet is more limited, Emily's diet is more limited, and they both have migraine now?!?! Maybe after Steven retires we'll get a better groove. Maybe the so called president will be impeached by then OH GOD PLEASE. God lift our burdens, and show us how you clothe the grass of the fields. Amen
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