My children know neither the voices nor even all the names of our family members, similarly they know neither the voicer nor even all the names of the instruments I play. Family and music have always defined me. But being head over tail in the care of my girls in all our illness and disease has made it clear that people prioritize things differently. I gave up music for the literal survival of my children, and my family gave us up because...we became too big a burden?
I have one cousin who has come to our aid when we call for help, so I see her more frequently. One of the many who live in town. I understand that people's lives need not revolve around ours. But I have friends who treat us better, who text just to see how we're doing. Who are planning their gardens around feeding Sasha. And it probably wouldn't be so bad if family didn't give us lip service. Please don't say you're going to visit or get together or help out if you're not going to visit or get together or help out, it is that simple!
Everyone in my family takes vacations. Everyone in my family SHOULD take vacations. But for the love of God, it sucks as a chronically ill caretaker of disabled children who will never take a vacation, to be told that family will come visit, only to have almost no one in 6 years come visit while watching everyone on their regular vacations. JUST FUCKING SAYING. While I'm trying to keep Sasha from throwing up the throw up meds in the middle of the night while simultaneously worrying how I'm going to pay for my next neurologist visit because US "health care" is out of control, THIS IS WHY I have no fucks left that I piss of the Republicans in the family. They are coming up with ways to destroy America, unprecedented ways. I have nothing left to lose.
Awkward family reunion? Oh you mean I might get to attend this year because we have slightly more manageable migraines no thanks to anyone we're going to go see? All I have left in life beside managing pain and puke by the hour is fighting for social justice that might one day benefit us and our fellow nonwhite males, through the intertubes and by calling the government. So I call the white house, congress, and committees, I sign petitions, leave comments, and I have discussions with people and call people out.
And I am so far from being alone. I have many friends who are having a worse time than me with their families over this administration. We are in a major turning point in history, and it Sucks. It is terrible and unfortunate and some Republicans have been hoping for this for a long time. They are an evil that must be stopped. At all cost. They are more dangerous and insidious than I think even most mild mannered American realize.
Feeling normal is a luxury I don't have. Having grown up conversations regularly is you guessed it, a luxury I don't have. And unfortunately I am already so broken and unsupported that I will fight poorly. I regret nothing. Now, I have to take migraine meds and get to work.
Friday, July 21, 2017
Tuesday, June 13, 2017
Good Dreams
I had the best dream today. Crawling out of this migraine hole has caused me to reinstate nap time, so I crashed near noon thirty as per protocol. My head had been perpetually burning for over a week, but thankfully let up today. However, migraine hangover means I'm still fatigued, so I got a bit of an early start. I don't know how quickly my dream came, but lemme tell you about my favorite part.
I was in a house that had been recently constructed. It was still being finished actually, but was habitable. It had high angular ceilings, and two living areas. (Hopefully that means two bathrooms!) It actually reminded me in shape of this house right when we moved in, before my dad put the wall in that completed my old tiny bedroom, except everything was bigger. There was limited furniture, wood floors, and nothing on the walls so the acoustics were nice and bouncy. I sang some arpeggios and the overtones were just absolutely killer. An old friend of mine was there and my piano was in one of the living areas, so she and I just started singing and harmonizing and giggling over ourselves. I didn't go to college with this friend, but we started singing college choir warmups because dreams are funny like that.
The newness and beauty of the house, the friendship, and of course the music made it the best dream I've had in recent memory, and I mean in the past few years. I mainly have nothing dreams or anxiety dreams. It's funny that as I'm planning a totally non-routine UCSF trip during dinner and traffic[read:nightmare], ordering a portable wardrobe so the new crap roommate has a place to keep his accoutrement lest he sully the office with his daily detritus, and still managing everyone's symptoms, my brain spits out a dream that is my actual dream.
I didn't lack energy, and of course no one was out of tune. Hehe, clearly not reality. But I will mentally revel in it none the less. I didn't know how badly I missed and needed happy thoughts. God, it was awesome.
I was in a house that had been recently constructed. It was still being finished actually, but was habitable. It had high angular ceilings, and two living areas. (Hopefully that means two bathrooms!) It actually reminded me in shape of this house right when we moved in, before my dad put the wall in that completed my old tiny bedroom, except everything was bigger. There was limited furniture, wood floors, and nothing on the walls so the acoustics were nice and bouncy. I sang some arpeggios and the overtones were just absolutely killer. An old friend of mine was there and my piano was in one of the living areas, so she and I just started singing and harmonizing and giggling over ourselves. I didn't go to college with this friend, but we started singing college choir warmups because dreams are funny like that.
The newness and beauty of the house, the friendship, and of course the music made it the best dream I've had in recent memory, and I mean in the past few years. I mainly have nothing dreams or anxiety dreams. It's funny that as I'm planning a totally non-routine UCSF trip during dinner and traffic[read:nightmare], ordering a portable wardrobe so the new crap roommate has a place to keep his accoutrement lest he sully the office with his daily detritus, and still managing everyone's symptoms, my brain spits out a dream that is my actual dream.
I didn't lack energy, and of course no one was out of tune. Hehe, clearly not reality. But I will mentally revel in it none the less. I didn't know how badly I missed and needed happy thoughts. God, it was awesome.
Friday, June 9, 2017
Mainly Brain Paste
I am appropriately sad. I feel it was unnecessary to ruin the joy this countdown to retirement was supposed to bring. I am not sad that Steven is a virtually useless douchebag, that is not wholly unexpected. I got over that sadness long ago. I am sad that summer sucks now, that the foreseeable future sucks. I am sad about the impending school year and the impact this shitshow is going to have on it.
More than anything I am upset at the loss of the everydayness, the every day looking forward to not a liar coming home, to not having to be in charge of every damn little thing. I was looking forward to sharing the load of life. I am still grateful that things will be easier for my mom as far as food processing goes. And the girls will...get to see their dad at least attempting to make amends for his shit life decisions. But, if I were to hire a random stranger to come help out with the house, I'd have an interview process and hire someone who was more trustworthy than Steven, who could make better self-directed decisions. And bonus, Steven's a shitty roommate! When you're married at least there's tradeoff, commitment, fun. I know it could be so much worse, at least I'm getting my money back and man labor Lord willing, but I'm also getting a shitty roommate who has to be managed, on top of sick kids, sick self, older dog, and diabetic dog. We ABSOLUTELY would not have gotten diabetic dog if I had known what was going on.
Son of a bitch, he was supposed to be out of debt, we were actually going to be saving money, and I was hoping to be able to make it back to the physical therapist which is something that measurably helps migraines but is expensive. And not that it really matters, but I wanted an iPad. It will open up options for the girls' schooling and hopefully for symptom tracking and charting. But mainly I think it will be fun and we desperately need more fun that doesn't require tons of energy. Goddamnit.
I must breathe it all away. There is no tomorrow, no yesterday, only now. And right now the meds are kicking in on the head that's been burning for 5 straight days. Hallelujah. The babies and I ran a couple of errands today, picked up meds, ran to the library. The library is magic. The girls have already finished some of the books we got today. It was challenging getting there between all our symptoms, but we walked calmly over our challenges and had a nice time. The babies and I pray together a lot, and that is magic too. Sasha did end up puking and taking pain meds for the first time in almost a month, but those are still incredibly impressive numbers I hope we can continue to build on. Or rather unbuild on. Er, off. I want her to keep feeling better and taking hardly any meds!
Speaking of magic, I've never made a serious dream boy list. I think it is high time.
I want someone who enjoys reading scholarly journals and nerd mags, thinking critically, and is probably a math and science nerd at least in his spare time. Naturally he will also be able to appreciate good zombie lit and sci fi movies, TV shows, etc. He will have to have a heavy dose of silly, and also be extremely sexy (like me duh). He doesn't have to be a musician, but it would probably be helpful. I am much more interested in him being well read, self motivated[I cannot over emphasize this one], and painfully attractive. He's got to have a real big give-a-shit box[I CANNOT OVER EMPHASIZE THIS ONE EITHER]. And oh my gosh, self awareness is a must. So basically, imaginary. Clearly my imaginary awesome dream boy will not be selfish, jealous, lazy, or an asshole. He will obviously manage money well and wisely.
Boy, that's a fun list. I bet I can add to it if I keep thinking. Maybe my imaginary boyfriend can help me write the book of our allergies and migraines and general drama, it'll sell in over 50 languages, and then I can hire some real help! But first I have to get through this wretched countdown, and live through this stupid summer and figure out how to function with a shitty new normal. Change and let the fuck go. Change and let the fuck go. Change and let the fuck go. I lack nothing. UCSF trip number 1 in 19 days.
More than anything I am upset at the loss of the everydayness, the every day looking forward to not a liar coming home, to not having to be in charge of every damn little thing. I was looking forward to sharing the load of life. I am still grateful that things will be easier for my mom as far as food processing goes. And the girls will...get to see their dad at least attempting to make amends for his shit life decisions. But, if I were to hire a random stranger to come help out with the house, I'd have an interview process and hire someone who was more trustworthy than Steven, who could make better self-directed decisions. And bonus, Steven's a shitty roommate! When you're married at least there's tradeoff, commitment, fun. I know it could be so much worse, at least I'm getting my money back and man labor Lord willing, but I'm also getting a shitty roommate who has to be managed, on top of sick kids, sick self, older dog, and diabetic dog. We ABSOLUTELY would not have gotten diabetic dog if I had known what was going on.
Son of a bitch, he was supposed to be out of debt, we were actually going to be saving money, and I was hoping to be able to make it back to the physical therapist which is something that measurably helps migraines but is expensive. And not that it really matters, but I wanted an iPad. It will open up options for the girls' schooling and hopefully for symptom tracking and charting. But mainly I think it will be fun and we desperately need more fun that doesn't require tons of energy. Goddamnit.
I must breathe it all away. There is no tomorrow, no yesterday, only now. And right now the meds are kicking in on the head that's been burning for 5 straight days. Hallelujah. The babies and I ran a couple of errands today, picked up meds, ran to the library. The library is magic. The girls have already finished some of the books we got today. It was challenging getting there between all our symptoms, but we walked calmly over our challenges and had a nice time. The babies and I pray together a lot, and that is magic too. Sasha did end up puking and taking pain meds for the first time in almost a month, but those are still incredibly impressive numbers I hope we can continue to build on. Or rather unbuild on. Er, off. I want her to keep feeling better and taking hardly any meds!
Speaking of magic, I've never made a serious dream boy list. I think it is high time.
I want someone who enjoys reading scholarly journals and nerd mags, thinking critically, and is probably a math and science nerd at least in his spare time. Naturally he will also be able to appreciate good zombie lit and sci fi movies, TV shows, etc. He will have to have a heavy dose of silly, and also be extremely sexy (like me duh). He doesn't have to be a musician, but it would probably be helpful. I am much more interested in him being well read, self motivated[I cannot over emphasize this one], and painfully attractive. He's got to have a real big give-a-shit box[I CANNOT OVER EMPHASIZE THIS ONE EITHER]. And oh my gosh, self awareness is a must. So basically, imaginary. Clearly my imaginary awesome dream boy will not be selfish, jealous, lazy, or an asshole. He will obviously manage money well and wisely.
Boy, that's a fun list. I bet I can add to it if I keep thinking. Maybe my imaginary boyfriend can help me write the book of our allergies and migraines and general drama, it'll sell in over 50 languages, and then I can hire some real help! But first I have to get through this wretched countdown, and live through this stupid summer and figure out how to function with a shitty new normal. Change and let the fuck go. Change and let the fuck go. Change and let the fuck go. I lack nothing. UCSF trip number 1 in 19 days.
Monday, June 5, 2017
That Escalated Quickly
Well. I feel like I've said this before, but it's hard to know where to start. I've spent the weekend changing and letting go. I really REALLY wish I could get my tattoos. Let us not forget the other, I Lack Nothing. So let's start with the good.
1. Sasha still feels good and hasn't had prescription pain or puke meds in almost 3 weeks or something. That is hella rad. [that phrase is going to age well]
2. I haven't taken migraine meds every single day this month so that's at least a start. I am adding naps back into my regimen and while I don't consider that good news AT ALL, it is good to have a plan to more forward with.
3. People have been crawling out of the woodwork to support me and it is fabulous.
4. We are still getting man labor. Probably hopefully, I don't see why that will change.
The Bullshit.
As you may have inferred dear reader, I am single again. Steven has a priorities problem, a lying problem, and a new and exciting gambling problem. He is in counseling now (so he says) and is still moving here when terminal leave starts in two goddamn weeks. He is sleeping either on the sofa or with the dog in the office because every other option costs money and he ain't got none because he has even more debt than he told me about because of course he does. Forget paying for his baby momma's car, that is pretty low on my give-a-shit list now since I had to start paying for his debt on my credit card, as he is an emotionally fragile man-baby. I now have to micro manage a destructive adult with the tendency to shut down. I am most concerned about setbacks. My plans are to get him here under my thumb, and keep him too busy working to get in trouble. Lord knows there is plenty here to do. I'm going to start by:
1. Unsmarting his phone so it only makes calls and sends texts.
2. Putting passwords on the computers that the kids know and he doesn't.
3. Taking away all his cards away and giving him an allowance.
That should do until I get my savings back plus all the recent money he owes me? I have no idea what snapped in his brain or when, but I had reservations the whole time we were back together about being married to a lesser quality person. I just figured that no one is perfect and at least the girls would have a dad present. Plus we have always been friends and I did appreciate his friendship. But damn, this is of course grossly and exponentially unacceptable.
I don't guess it matters I'll be micro managing my ex who lives with me as far as it pertains to any future relationship. I feel like that is a negative concern, it matters so little right now. I just want the kids to feel better, and Steven to not ruin my financial future. All right, I have a nap to take.
1. Sasha still feels good and hasn't had prescription pain or puke meds in almost 3 weeks or something. That is hella rad. [that phrase is going to age well]
2. I haven't taken migraine meds every single day this month so that's at least a start. I am adding naps back into my regimen and while I don't consider that good news AT ALL, it is good to have a plan to more forward with.
3. People have been crawling out of the woodwork to support me and it is fabulous.
4. We are still getting man labor. Probably hopefully, I don't see why that will change.
The Bullshit.
As you may have inferred dear reader, I am single again. Steven has a priorities problem, a lying problem, and a new and exciting gambling problem. He is in counseling now (so he says) and is still moving here when terminal leave starts in two goddamn weeks. He is sleeping either on the sofa or with the dog in the office because every other option costs money and he ain't got none because he has even more debt than he told me about because of course he does. Forget paying for his baby momma's car, that is pretty low on my give-a-shit list now since I had to start paying for his debt on my credit card, as he is an emotionally fragile man-baby. I now have to micro manage a destructive adult with the tendency to shut down. I am most concerned about setbacks. My plans are to get him here under my thumb, and keep him too busy working to get in trouble. Lord knows there is plenty here to do. I'm going to start by:
1. Unsmarting his phone so it only makes calls and sends texts.
2. Putting passwords on the computers that the kids know and he doesn't.
3. Taking away all his cards away and giving him an allowance.
That should do until I get my savings back plus all the recent money he owes me? I have no idea what snapped in his brain or when, but I had reservations the whole time we were back together about being married to a lesser quality person. I just figured that no one is perfect and at least the girls would have a dad present. Plus we have always been friends and I did appreciate his friendship. But damn, this is of course grossly and exponentially unacceptable.
I don't guess it matters I'll be micro managing my ex who lives with me as far as it pertains to any future relationship. I feel like that is a negative concern, it matters so little right now. I just want the kids to feel better, and Steven to not ruin my financial future. All right, I have a nap to take.
Monday, May 29, 2017
WARNING: HOT STICKY RAGE
We survived another school year, accidentally stopped giving Sasha half her meds every day, she is feeling 2 orders of magnitude better because of it, Steven is coming home in about a month, and he can burn in Hell for all I care. Oh, and I've been trending up in migraine days since the beginning of 2017.
When Steven and I were separated he decided to whore it up, spend my life savings, get into debt, and make a love child. He currently pays generous child support which I am of course completely in support of. However, I recently had to loan Steven one thousand dollars from the meager savings I've managed to scrape together since we've been separated, because he accidentally made double car payments on both his cars this month. It could have been an honest mistake, except that he was intentionally hiding the fact he had purchased a car for his baby momma and was still paying for it, (in addition to the generous child support). So to be clear, he literally spent my life savings, ran up tens of thousands of dollars in debt whoring around, and is still spending my savings on his baby momma's car.
And only when he got caught hiding the fact that he's still spending my money on a secret car for his baby momma did he 'fess up to gambling away three thousand dollars in February of this year.
Needless to say I was upset. But you know what? I did manage to process this on an adult level [after some HEAVY swearing and several days of radio silence] and acknowledge all the work he has put into our relationship and being a parent. I told him that I would no doubt continue to have trust issues but that we would continue to work through it. I realize that he is human and still makes mistakes and when it comes down to it, we need him here. The kids need him, I need him, shoot even the dogs need him. So we're a family and he's an asshole but I still love him.
A few days after I acknowledged all this to him and we were on good speaking terms again, I asked him what he was planning on doing about the car situation. I wanted to know and my mom was asking me. He had no idea, so I let it go a couple more days. Then I asked when he was flying out to get his car so he could sell it.
[If you have delicate sensibilities, just stop reading]
Then that degenerate motherfucking insane piece of stale shitstain told me I was mean. He said that was mean, but probably the logical thing to do. Dear reader, need I tell I lost my mind? What little mind I have left after raising his two chronically ill kids that had to be removed from him because he constantly endangered them due to carelessness with their life-threatening food allergies, I lost.
I apologize for assaulting you with this story, but I have been pondering and praying, stewing and meditating and I got nothing, except that writing it out makes me more and more nervous about letting Steven exist in our lives. Days later and he still has no plan to get his second "secret" car. We reconciled over a year ago, long before he ever decided to gamble. (If he's telling the truth) We knew there was a family reunion coming up, were thinking about doing a rededication ceremony there. How beautiful would that have been? Lololololfuck. That. Shit. He is the deceiver he has always been, I am the least of his priorities that I have always been, and I am out of options.
How screwed are we?!?!! At least the kids are old enough now to not let him poison them I FUCKING HOPE OH MY GOD. And seriously, trending up in migraine days this entire year, I could do without. Probably the Sasha miracle is to keep me from honest to God burning the house down. Thank you Jesus.
When Steven and I were separated he decided to whore it up, spend my life savings, get into debt, and make a love child. He currently pays generous child support which I am of course completely in support of. However, I recently had to loan Steven one thousand dollars from the meager savings I've managed to scrape together since we've been separated, because he accidentally made double car payments on both his cars this month. It could have been an honest mistake, except that he was intentionally hiding the fact he had purchased a car for his baby momma and was still paying for it, (in addition to the generous child support). So to be clear, he literally spent my life savings, ran up tens of thousands of dollars in debt whoring around, and is still spending my savings on his baby momma's car.
And only when he got caught hiding the fact that he's still spending my money on a secret car for his baby momma did he 'fess up to gambling away three thousand dollars in February of this year.
Needless to say I was upset. But you know what? I did manage to process this on an adult level [after some HEAVY swearing and several days of radio silence] and acknowledge all the work he has put into our relationship and being a parent. I told him that I would no doubt continue to have trust issues but that we would continue to work through it. I realize that he is human and still makes mistakes and when it comes down to it, we need him here. The kids need him, I need him, shoot even the dogs need him. So we're a family and he's an asshole but I still love him.
A few days after I acknowledged all this to him and we were on good speaking terms again, I asked him what he was planning on doing about the car situation. I wanted to know and my mom was asking me. He had no idea, so I let it go a couple more days. Then I asked when he was flying out to get his car so he could sell it.
[If you have delicate sensibilities, just stop reading]
Then that degenerate motherfucking insane piece of stale shitstain told me I was mean. He said that was mean, but probably the logical thing to do. Dear reader, need I tell I lost my mind? What little mind I have left after raising his two chronically ill kids that had to be removed from him because he constantly endangered them due to carelessness with their life-threatening food allergies, I lost.
I apologize for assaulting you with this story, but I have been pondering and praying, stewing and meditating and I got nothing, except that writing it out makes me more and more nervous about letting Steven exist in our lives. Days later and he still has no plan to get his second "secret" car. We reconciled over a year ago, long before he ever decided to gamble. (If he's telling the truth) We knew there was a family reunion coming up, were thinking about doing a rededication ceremony there. How beautiful would that have been? Lololololfuck. That. Shit. He is the deceiver he has always been, I am the least of his priorities that I have always been, and I am out of options.
How screwed are we?!?!! At least the kids are old enough now to not let him poison them I FUCKING HOPE OH MY GOD. And seriously, trending up in migraine days this entire year, I could do without. Probably the Sasha miracle is to keep me from honest to God burning the house down. Thank you Jesus.
Wednesday, March 1, 2017
Charts!
On a scale of one to five, one being clear spit and five being redecorating, most of Sasha's puke is in the two and a half to three range. It took me a while to figure out a workable scale, toying first with one to ten, and then one to seven. It needed a middle number for starters so ten was out, and a seven scale is too difficult to hold in my head. And even tho a five scale with halves could sort of be simplified by using a ten scale, the former seems to capture the nuance of vomit better. So there's a sentence I never imagined writing.
I'm confident we're becoming better neurological patients. This probably has to do with homeschooling honestly, that and just time spent in a neurologist's office, and knowing what kind of info is useful to them. But teaching two different minds, two different level of math, plus tracking all the food and food systems in the house has made me better at thinking of things in terms of data. And tracking data in pretty colors helps me untangle things, and feel at least like an informed onlooker if not more in control. Like how understanding baseball makes it infinitely more interesting.
I do wish I could track more of the girls' symptoms more meticulously, but I haven't the energy. Today absolutely kicked my butt and we did some school, I got some pills made, and made some food. If I can swing it, I need to make more pills and do more food. Oh, but I want to make charts. Maybe I'll just make one chart to track Sasha's puke number and tape it up in the bathroom, where it will be easily accessible. Hm, I'll have to hide it under a drawing or something...Oooh, a volcano picture?
I'm confident we're becoming better neurological patients. This probably has to do with homeschooling honestly, that and just time spent in a neurologist's office, and knowing what kind of info is useful to them. But teaching two different minds, two different level of math, plus tracking all the food and food systems in the house has made me better at thinking of things in terms of data. And tracking data in pretty colors helps me untangle things, and feel at least like an informed onlooker if not more in control. Like how understanding baseball makes it infinitely more interesting.
I do wish I could track more of the girls' symptoms more meticulously, but I haven't the energy. Today absolutely kicked my butt and we did some school, I got some pills made, and made some food. If I can swing it, I need to make more pills and do more food. Oh, but I want to make charts. Maybe I'll just make one chart to track Sasha's puke number and tape it up in the bathroom, where it will be easily accessible. Hm, I'll have to hide it under a drawing or something...Oooh, a volcano picture?
Thursday, February 23, 2017
Moving In
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.
"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.
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