Jesus, H, Christ. Thank the good Lord that Sasha's head came under control, via my brain tiara which is approved for children as young as 8...everywhere in the world except for the US. But I care? She's taken pain meds once in the week or so since she started using it. Once, down from 28 pain med days (sometimes more than once a day) out of the previous 48. It's a freaking TENS unit with no side effects other than sleepiness, thank God. We were having hellish nights of being up till 1, or getting up between 11 and 3 in pain, and now her head pain is negligible. She still has abdominal pain, but it has been manageable. So we'll see how this goes and pray the neurologist doesn't yell at me. Shoot, I have meds prescribed for both girls that aren't approved for minors that absolutely DO have known side effects, so eff that mess, the fda can suck it.
It probably says a lot that I'm looking forward to my root canal tomorrow. Like, a lot. My dentist's chairs are Super comfortable, and I get to relax in one with two pairs of sunglasses on and get my sore tooth fixed. I don't even understand, I had a small cavity in the side of a tooth that my dentist was confused as to how I even got, he filled it, and it got infected and now I need a root canal. I guess I'm not confused, I've just never had that happen. But there is so much good tooth left I may not even need a cap, and it's supposed to be one of the easiest teeth to um, root out or canal or whatever. But prayers are still appreciated. I've had a migraine for near a week due to our first foray to the friday market plus heat plus hormones, and I really need to be up to hitting the next friday market to search for pears.
And then there's my ever broken freeze dryer. *smh* Stupid Harvest Right was supposed to call me today and walk me through ANOTHER repair to try, but they didn't call. I really need that thing to have been working, and now I need it to kick in fast. (pause for not-irate-but-not-happy-email) Ok, I emailed and vented a little bit. This is ridiculous.
So Emily. In my bullet journal research I came across something called spiraldex, a time management tool. It looks like a seashell and I saw a lady using it to track chronic pain, so I'm going to have Emily start using it to track fatigue, screen time, and a few other things. It'll be a nice visual which will hopefully help us manage symptoms and life in general. I've already got stuff to transfer into my bullet journal when it arrives, (just a big moleskine) and it's already helping me keep track of the insanity that goes on around here, so I'm a fan. I even found the blog of a chronically ill mom who homeschools one of her two special needs kids, I kid you not! I have searched for blogs like this and was convinced they didn't exist. She bullet journals of course, which help maintain her sanity. Whee!
It seems we can never get going, never find a rhythm or routine. We are constantly in crisis and cleanup mode. I'M LOOKING FORWARD TO A ROOT CANAL FOR CRAP'S SAKE. But these things help: Organization, pretty colors, venting, and not feeling completely alone. And progress, always progress. Man I hope Harvest Right comps me one of their new, large capacity machines for all the damn hassle this one has been. And thank God for the brain tiara, and Sasha's 8yr old brains. Piece of crap, she's been getting migraines since she was 4. This year, the girls have each gotten migraines for half their lives. I haven't even been chronic for half my life yet, not till next year. I will color in a picture with pretty colors now.
Wednesday, September 28, 2016
Saturday, September 10, 2016
The Shit Show plus good news for balance
I want to can this moment of peace, to preserve it in a jar and pour it on the wrath of tomorrow, or maybe even the mayhem of the night that awaits us. We are guaranteed nothing in this wretched fog of pain and confusion. Both girls are asleep, but at least Emily with her fatigue and mild abdominal pain has been a somewhat functional human being. Sasha contorts her face in the pain of the cures, the ice at the base of her sore head, the taste of the pills. She rips the Cefaly off her head because it's too tingly even on the lowest setting. Fuck schoolwork completely, and just get used to walking on clothes and toys, they will never get picked up.
We just went to their neurologist and came back full of some hope, which really does make it worse. I guess I'll be calling on Monday if nothing changes this weekend. Shit, that's better than trying to navigate the hospital with a corn allergy, my God, the adhesives alone are enough to give me a panic attack! It's one thing to pull your kid from school because they are sick, but it's quite another to consider pulling them from homeschool. That is a thing you know, being dropped by your homeschool for being truant. Fuck everything, I'll take a year off and play catch up when Daddy retires. We'll take unschooling to exciting new levels, and memorize every single episode of My Little Pony: Friendship Is Magic, and preserve as much food and peace as we possibly can. I like the sound of this.
I'll be sad to give back the goodies, the school supplies. But I guess that's what the library is for. And I'm not sure I'll have to give anything back as long as Emily stays in school. God, what a nightmare. But a nightmare is better than a deathmare. I'm sure any parent would trade a manageable nightmare for a funeral. I saw my neurologist this week. She was so naive as to suggest that when the girls went off to college, I'd get better. It took all I had not to laugh in her face.
So far this is the fewest migraine med days I've had in a September, if there is an upside to our life recently. August had a high number of days, but I'm pretty sure that's mainly because I was so super functional. And this is the first month I've seen an actual reduction in med days since being on my newest med. I don't have to see my neuro for 3 whole months assuming this trend of awesome continues. But yeah, if the girls go off to college, I'll eat my favorite hat. The other good news is that my freeze dryer is up and running again. The screen had to be replaced and recalibrated, so I lost a good week of freeze drying. It was easy enough, but took energy I would like to have spent elsewhere.
So, I'm better which is excellent because Emily isn't and Sasha has really tanked. A brand new 8yr old in constant pain for days on end will wear on more than just her. And we have all this family stuff coming up that we're not going to make, and that's really the least of my worries. But it still sucks, because I miss my family among other people. But oh, we have gotten a great start to pear season. There were no pears at the market this week, but hopefully it's just a break. I don't see being able to drag the kids to the Friday market to check their supply, so it's probably just going to end up being what we can get on Saturdays. Shoot. Also our avocado vendor seems to have died or something, which sucks double because I have a freeze dryer now. Hm. At least the girls are still sleeping, thank Jesus. I'd love to line up as many jars of peace under my bed as I have zucchinis, cabbage, and water, and put some extra in the pantry by the honey. Honey and peace and pear sauce.
ps. I'm taking donations for an ipad pro and apple pencil. I want a place to take notes and have them all together and organized. Food production and tally, school, doctor notes, you name it. Plus a nice big screen for angry birds and sheet music! Make checks out to Pipe Dreaming Inc. <3
We just went to their neurologist and came back full of some hope, which really does make it worse. I guess I'll be calling on Monday if nothing changes this weekend. Shit, that's better than trying to navigate the hospital with a corn allergy, my God, the adhesives alone are enough to give me a panic attack! It's one thing to pull your kid from school because they are sick, but it's quite another to consider pulling them from homeschool. That is a thing you know, being dropped by your homeschool for being truant. Fuck everything, I'll take a year off and play catch up when Daddy retires. We'll take unschooling to exciting new levels, and memorize every single episode of My Little Pony: Friendship Is Magic, and preserve as much food and peace as we possibly can. I like the sound of this.
I'll be sad to give back the goodies, the school supplies. But I guess that's what the library is for. And I'm not sure I'll have to give anything back as long as Emily stays in school. God, what a nightmare. But a nightmare is better than a deathmare. I'm sure any parent would trade a manageable nightmare for a funeral. I saw my neurologist this week. She was so naive as to suggest that when the girls went off to college, I'd get better. It took all I had not to laugh in her face.
So far this is the fewest migraine med days I've had in a September, if there is an upside to our life recently. August had a high number of days, but I'm pretty sure that's mainly because I was so super functional. And this is the first month I've seen an actual reduction in med days since being on my newest med. I don't have to see my neuro for 3 whole months assuming this trend of awesome continues. But yeah, if the girls go off to college, I'll eat my favorite hat. The other good news is that my freeze dryer is up and running again. The screen had to be replaced and recalibrated, so I lost a good week of freeze drying. It was easy enough, but took energy I would like to have spent elsewhere.
So, I'm better which is excellent because Emily isn't and Sasha has really tanked. A brand new 8yr old in constant pain for days on end will wear on more than just her. And we have all this family stuff coming up that we're not going to make, and that's really the least of my worries. But it still sucks, because I miss my family among other people. But oh, we have gotten a great start to pear season. There were no pears at the market this week, but hopefully it's just a break. I don't see being able to drag the kids to the Friday market to check their supply, so it's probably just going to end up being what we can get on Saturdays. Shoot. Also our avocado vendor seems to have died or something, which sucks double because I have a freeze dryer now. Hm. At least the girls are still sleeping, thank Jesus. I'd love to line up as many jars of peace under my bed as I have zucchinis, cabbage, and water, and put some extra in the pantry by the honey. Honey and peace and pear sauce.
ps. I'm taking donations for an ipad pro and apple pencil. I want a place to take notes and have them all together and organized. Food production and tally, school, doctor notes, you name it. Plus a nice big screen for angry birds and sheet music! Make checks out to Pipe Dreaming Inc. <3
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