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
Saturday, September 10, 2016
Friday, August 5, 2016
The Beast
And just like that thoughts are gone. Not all gone, some are just wrapped in marshmallow, and access is thick, and sticky. Ugh, such a mess. Disastrous. Too much effort. I seriously hate my life right now, today, and not yesterday. (Hopefully not tomorrow.) These days suck obviously, and I feel like there are fewer of them thanks to the mew meds I've been on for several months. But I'm not really having fewer migraine days. All the days are still better tho.
Today happens to be a combination of hormone migraine plus and inherited cold migraine, a crappy combination. One just wishes that with all the efforts taken, you'd see a reduction in migraine days for fart's sake! Special glasses upon special glasses and hey, my eyes really DO feel better! Still migraines. Physical therapy out of pocket no less and what do you know, my better days are way better and I'm all kinds of functional! Still migraines. However, I'm not spending every evening locked in my room just to survive. I'm actually taking meds on more days and I think it's because I am so much more functional. I'm upsetting the beast. More function more often equals more migraine med days. But I'm still feeling better overall.
What this tells me is the beast is firmly planted, we just found a food it likes a little better. It's a happier beast. A happier beast living in you, running your life is better than an angrier beast.
Sometimes writing sucks. But not writing sucks even more.
Today happens to be a combination of hormone migraine plus and inherited cold migraine, a crappy combination. One just wishes that with all the efforts taken, you'd see a reduction in migraine days for fart's sake! Special glasses upon special glasses and hey, my eyes really DO feel better! Still migraines. Physical therapy out of pocket no less and what do you know, my better days are way better and I'm all kinds of functional! Still migraines. However, I'm not spending every evening locked in my room just to survive. I'm actually taking meds on more days and I think it's because I am so much more functional. I'm upsetting the beast. More function more often equals more migraine med days. But I'm still feeling better overall.
What this tells me is the beast is firmly planted, we just found a food it likes a little better. It's a happier beast. A happier beast living in you, running your life is better than an angrier beast.
Sometimes writing sucks. But not writing sucks even more.
Saturday, July 30, 2016
Both Sides
I think we are taught to pray in faith, right? We pray with the hope that we are being listened to, that our prayers are answered be it yes or no. But always with this two-sidedness about it. I'm not saying that's wrong, I'm saying that's absolutely right. But the way I have pictured it has been wrong. Sometimes two-sidedness is still having your heart splayed open and regularly stomped upon. No one tells you that's allowed in the two-sided faith of prayers. That might have been helpful. I can see why that lesson was neglected, it's not pretty and it's not exactly gonna put butts in the seats of a youth group meeting. (but don't even get me started)
An awful lot of things are allowed in the two-sided faith of prayers that you don't hear about, like long suffering. You do not want to know about that. And it's not joy in long suffering, it's suffering, for a long ass time. That is totally allowed. So is having your head split open regularly, or rather the feeling of it. Don't misunderstand me, there is a lot of joy in living while suffering, but there is not a lot of joy in having your head split open regularly. You get the difference? Huge ass suffering for decades and decades is totally allowed in two-sided, faithful, prayer. And it doesn't mean you're doing anything wrong or not doing anything right.
With my heart splayed open, and a spike in my head, I will still pray for this world, knowing all may not go down as I desire. Truth will guide me, joy will strengthen me, and the Lord will never cease to provide. Thank you Jesus, that is all. Amen.
An awful lot of things are allowed in the two-sided faith of prayers that you don't hear about, like long suffering. You do not want to know about that. And it's not joy in long suffering, it's suffering, for a long ass time. That is totally allowed. So is having your head split open regularly, or rather the feeling of it. Don't misunderstand me, there is a lot of joy in living while suffering, but there is not a lot of joy in having your head split open regularly. You get the difference? Huge ass suffering for decades and decades is totally allowed in two-sided, faithful, prayer. And it doesn't mean you're doing anything wrong or not doing anything right.
With my heart splayed open, and a spike in my head, I will still pray for this world, knowing all may not go down as I desire. Truth will guide me, joy will strengthen me, and the Lord will never cease to provide. Thank you Jesus, that is all. Amen.
Wednesday, June 22, 2016
Weednyland
Today is the worst Sasha has felt all week, and she still avoided rescue meds and drastic measures. Some of her suffering may have been avoided if we hadn't gone to the library when the therapy dogs were there, but what's the point of living if you can't even have therapy dogs? Although, maybe leaving early wasn't the worst idea, which was due to Emily's abdominal migraine. Still, it was success in several ways.
I am trying my darndest to avoid rescue meds myself this evening. April, May, and June have been crap. Yesterday was declared a "relax day" since we had been out and about a bit, due to Sasha's feeling better and some family visiting, doctor appointments and errands etc. My relax day activities included a few loads of laundry spread throughout the day, but it was enough to kick my butt today. Ah, the spoonie life. It pisses me off. I am happy to see neatly folded piles of dishcloths and unpaper towels, but upset that it comes with such a steep price. But it's not just the laundry, it's the fact I processed greens and made and then froze two pots of soup earlier this week, plus plus plus plus plus....COME ON BODY!!!
But back to the kids, it's absolutely thrilling that Sasha has had so many good days in a row. Seven counting today, although she did fight nausea for maybe half of it. That's still not the worst and not even average. It's so much less stressful when she's not suffering constantly. So maybe some combination of probiotics and cleaning her out were helpful? Or maybe it's the lack of having to do schoolworks? Maybe it's just a fluke?!?!!! Only time will tell. Now if Emily would start feeling better.
Physical therapy is kicking my head, neck, and shoulders, to very little avail yet. Last round it cut rescue med days in half, so I'm hanging in and doing my exercises and icing like the Queen of Narnia. Again with the dumb patience. But honestly, suffering together has been kind of a life raft for us. We had to leave the library early for Emily when Sasha would rather have stayed, but I reminded her how much Em takes care of her when she's not feeling well, and it wasn't an issue. And when I go through my cycles of more and less energy, the kids aren't demanding at all. They just ask how I'm feeling and always wish me to feel better, and give hugs and kisses. And we pray together a lot.
And even tho we're on summer break, Emily was home with Sasha and I for most of the school year even before she was officially homeschooled, which has made us closer as a family. We very much take turns paddling. Sometimes we just drift, then have to deal with where we've ended up. Not to sound too much like Captain America (who totally ISN'T a Hydra agent btw, that's copout garbage) but whatever we do, we do together. The girls are still hilarious and quick-witted, and while we'd rather our raft be at Disneyland, at least we're tangled in the weeds with good company. Bonus, Steven gets to visit this weekend. It's nice when he paddles for a while.
Gah, I need to ice my head. Peace out homies.
I am trying my darndest to avoid rescue meds myself this evening. April, May, and June have been crap. Yesterday was declared a "relax day" since we had been out and about a bit, due to Sasha's feeling better and some family visiting, doctor appointments and errands etc. My relax day activities included a few loads of laundry spread throughout the day, but it was enough to kick my butt today. Ah, the spoonie life. It pisses me off. I am happy to see neatly folded piles of dishcloths and unpaper towels, but upset that it comes with such a steep price. But it's not just the laundry, it's the fact I processed greens and made and then froze two pots of soup earlier this week, plus plus plus plus plus....COME ON BODY!!!
But back to the kids, it's absolutely thrilling that Sasha has had so many good days in a row. Seven counting today, although she did fight nausea for maybe half of it. That's still not the worst and not even average. It's so much less stressful when she's not suffering constantly. So maybe some combination of probiotics and cleaning her out were helpful? Or maybe it's the lack of having to do schoolworks? Maybe it's just a fluke?!?!!! Only time will tell. Now if Emily would start feeling better.
Physical therapy is kicking my head, neck, and shoulders, to very little avail yet. Last round it cut rescue med days in half, so I'm hanging in and doing my exercises and icing like the Queen of Narnia. Again with the dumb patience. But honestly, suffering together has been kind of a life raft for us. We had to leave the library early for Emily when Sasha would rather have stayed, but I reminded her how much Em takes care of her when she's not feeling well, and it wasn't an issue. And when I go through my cycles of more and less energy, the kids aren't demanding at all. They just ask how I'm feeling and always wish me to feel better, and give hugs and kisses. And we pray together a lot.
And even tho we're on summer break, Emily was home with Sasha and I for most of the school year even before she was officially homeschooled, which has made us closer as a family. We very much take turns paddling. Sometimes we just drift, then have to deal with where we've ended up. Not to sound too much like Captain America (who totally ISN'T a Hydra agent btw, that's copout garbage) but whatever we do, we do together. The girls are still hilarious and quick-witted, and while we'd rather our raft be at Disneyland, at least we're tangled in the weeds with good company. Bonus, Steven gets to visit this weekend. It's nice when he paddles for a while.
Gah, I need to ice my head. Peace out homies.
Thursday, June 2, 2016
Thrift Store Vinyl
Ya well, that was all very new wasn't it? May was a total transition month. Our homeschool year officially finished which is probably why Sasha has now gone two days in a row sans rescue meds, and we made it to UCSF and back where we learned that Emily will start seeing Sasha's neurologist. Em's neurologist is moving away to be near family. I like her, but I also like Sasha's neurologist, and this will really smooth our appointment schedule over. Also, Sasha's neurologist reminds me of my brother, double bonus. However, Em's current neuro is a woman, and girls are generally smarter than boys so...I'll just hope for the best. (;
When Steven first kept reminding me to let him know when the appointment was so he could take leave and come with us, I assumed my mom would still go, because as much as I appreciate Steven's current efforts at not being a dumbass, I still doubted things like his driving skills and general effectiveness at being...aware. UCSF days are incredibly hard for me, what with the food planning and packing it requires, and the management on the day of it takes. I've never not had a migraine due to the trip. But as the day drew nearer, my trust in Steven's abilities grew, and I let mom off the hook. And with his help, I didn't get a migraine the day before during packing, the day of, or even the whole rest of the week. We even had to run the girls around to labs after their appointments! The day was a success in many ways.
We're not shaking the earth with the girls' meds presently, just ruling things out beside migraine for their fatigue and nausea/abdominal drama, but I suspect it's all just migraine. We're at the best we can hope for with Sasha's current or any med really, since her frequency and severity of migraine have been reduced, which sucks because she suffers every day still. Pretty much the same with Em. In other words, we're at the "grasping at straws" stage where we rule out everything else and then slog through the list of meds just to see if any one of the others works better and pray that none of them have worse side effects. So that sucks. The upside is that they're eating, drinking water, peeing, pooping, growing, learning, and no one's living out of a hospital. These are HUGE. HUUUUUUUGE!! So we'll traipse to all the specialists within reasonable diving distance because this is our life now, and then do nerd stuff because it's fun and awesome and also because I have to prove to the state that they learn sufficiently and we're just into the habit now so why not? More #geometryourfacesoff coming to you soon.
I'm back in physical therapy for migraine, which is fantastic. My therapist thinks I should go rock wall climbing, which sounds fun. I told him I'd love it and would give myself a migraine doing it but was game anyway, so we'll see. I actually don't see how it could possibly be a good idea, but of all the ways I give myself migraines, that sounds more fun than "folded too much laundry", by at least 50 or 65 points.
I have no great plans for the summer, except for rocking survival mode. I'd like to get fewer migraines and I'd like the girls to have more good days. But there will be food to process and appointments to attend, all kinds of walls to climb and meds and methods to trial. We have a Steven now and a Steven is a good thing. Maybe when that is a true statement for as long as it was a false statement, I will be accustomed to it. It is a blessed and wonderful thing, to have a willing and supportive partner. Every day is still hard, but not as hard. The hardest part is having to keep such a tight reign on Sasha, who when she overdoes it can still get a killer pain, vomit everywhere, up all night, shitfest of a migraine. It's heartbreaking. Incidentally she is also the one allergic to America. Between her existence and me having to take a nap in the middle of every day, we tend to leave the house as little as possible. Pray for that kid, and for us.
ps. If anyone wants to go to the thrift store and find me useless old colored vinyl records, I would really appreciate it. Sasha wants to make more fortune cookies.
When Steven first kept reminding me to let him know when the appointment was so he could take leave and come with us, I assumed my mom would still go, because as much as I appreciate Steven's current efforts at not being a dumbass, I still doubted things like his driving skills and general effectiveness at being...aware. UCSF days are incredibly hard for me, what with the food planning and packing it requires, and the management on the day of it takes. I've never not had a migraine due to the trip. But as the day drew nearer, my trust in Steven's abilities grew, and I let mom off the hook. And with his help, I didn't get a migraine the day before during packing, the day of, or even the whole rest of the week. We even had to run the girls around to labs after their appointments! The day was a success in many ways.
We're not shaking the earth with the girls' meds presently, just ruling things out beside migraine for their fatigue and nausea/abdominal drama, but I suspect it's all just migraine. We're at the best we can hope for with Sasha's current or any med really, since her frequency and severity of migraine have been reduced, which sucks because she suffers every day still. Pretty much the same with Em. In other words, we're at the "grasping at straws" stage where we rule out everything else and then slog through the list of meds just to see if any one of the others works better and pray that none of them have worse side effects. So that sucks. The upside is that they're eating, drinking water, peeing, pooping, growing, learning, and no one's living out of a hospital. These are HUGE. HUUUUUUUGE!! So we'll traipse to all the specialists within reasonable diving distance because this is our life now, and then do nerd stuff because it's fun and awesome and also because I have to prove to the state that they learn sufficiently and we're just into the habit now so why not? More #geometryourfacesoff coming to you soon.
I'm back in physical therapy for migraine, which is fantastic. My therapist thinks I should go rock wall climbing, which sounds fun. I told him I'd love it and would give myself a migraine doing it but was game anyway, so we'll see. I actually don't see how it could possibly be a good idea, but of all the ways I give myself migraines, that sounds more fun than "folded too much laundry", by at least 50 or 65 points.
I have no great plans for the summer, except for rocking survival mode. I'd like to get fewer migraines and I'd like the girls to have more good days. But there will be food to process and appointments to attend, all kinds of walls to climb and meds and methods to trial. We have a Steven now and a Steven is a good thing. Maybe when that is a true statement for as long as it was a false statement, I will be accustomed to it. It is a blessed and wonderful thing, to have a willing and supportive partner. Every day is still hard, but not as hard. The hardest part is having to keep such a tight reign on Sasha, who when she overdoes it can still get a killer pain, vomit everywhere, up all night, shitfest of a migraine. It's heartbreaking. Incidentally she is also the one allergic to America. Between her existence and me having to take a nap in the middle of every day, we tend to leave the house as little as possible. Pray for that kid, and for us.
ps. If anyone wants to go to the thrift store and find me useless old colored vinyl records, I would really appreciate it. Sasha wants to make more fortune cookies.
Tuesday, April 19, 2016
All The News
It's not a perfect system, and although I didn't expect my house to become instantly organized or anything, it would have been nice. But it's kind of better than I expected, which certainly counts as a bonus. I withdrew Emily from our beloved Elementary school last week, after a meeting that was originally intended to set up a 504 plan. But than kind of plan supposes your child will actually be IN school, whereas Emily hasn't been to a complete week of school since before Christmas break, and hasn't been to any school at all in I'm not sure how many weeks. My newest mantra is, "This isn't the reality we wanted, but it is the reality we've been handed, so we're going to rock it." And rock it we have.
It's too late in the year to officially enroll Em in the same homeschool as Sasha, but I did have budget left so I managed to order some stuff for her for the end of the year and the summer, since Sasha will have to do some school over summer. These kids have three awake modes: Play, Learn, and Feel Crappy. You can combine the fist two, but the last one trumps all. Since they spend so much time in FC mode, we have to sneak Learning in whenever possible, summer be damned. And if I can get a jump on second and fifth grade, so be it. The plan is to homeschool Em next year as well, barring a miracle of course. The problem with neurologist appointments and trying new levels of new medications is that you have to wait forever to see if they're going to work. And lately, they don't. And suddenly six months have passed and you're not any better. In fact, you're worse. Shoot.
Which brings up one of the main problems with our lifestyle. Aside from dealing with daily pain and illness, how in the world are we supposed to find enough routine to function? I've been wrestling with that one for months now and am just barely starting to figure it out, thanks to Emily officially homeschooling, and my own head being just slightly better enough to think. It means having all your alternate plans ready at any given moment. It's having primary, secondary, tertiary goals, and being completely fine with dumping them all to take care of disaster/s, and then jumping back in to some combination of those goals again if by chance one, both, or all three of you start feeling decent, good, or amazing. Many times a day, every day, without breaks or vacations. And it's not nearly as easy as it sounds.
All your alternate plans for all your goal levels take energy and effort of course. And switching between them also takes energy, as does explaining what happened and why to your kids who are in various states of fits and exhaustion. This lifestyle leaves little time for anything else but breathing and coping. We don't see friends or leave the house much and we have to be ok with that right now. It's not the reality we wanted, but it is the reality we've been handed, so we're going to rock it.
Now that we've embracing homeschool for both kids, we're having more nice moments. I don't have to call Em's school every damn day and have the same sad conversation, or worry about picking up work. And now that I'm officially her teacher, she has to do what I tell her mathematically, mua ha ha...I can't complain tho, because she's into math, reading, and science so I'm not sure what more I could ask for in a student. It's still a struggle due to fatigue, but I'm sufficiently used to struggle. I mean, we're still figuring a lot out, and I didn't get to all the things I wanted to today, but I have learned you can't stress about it. I'm not always going to have a migraine and neither is she, and on the better days we'll do more. Plus I'm learning how to sneak things in, how to make it easy to shove knowledge into their heads and what works for us.
I guess to be completely honest, I have felt a lot more supported lately. A big stressor has elsewhere been lifted. The girls' dad got his head out of his anal region several months ago. He sacked up, parted ways with his heinous she-bag of a baby-momma, got a second job and is almost out of debt, and is even in counseling voluntarily for the first time in his life. He is hellbent on getting his family back and I am not inclined to stop his pursuit. Our friendship has always been intact, and he is addressing every other concern I always had. And I am raking him over the coals about our wretched piece of crap marriage, make no mistake. But certainly there is room for redemption, and he is showing shocking signs of growth and maturity. Shocking. So, this would be new, because everything we had before was garbage. But best of all, he is investing in the girls' lives, and being extremely helpful when he comes to visit. (Like I said, shocking.) I am stuck between too tired to be terribly excited and "For f***'s sake, FINALLY!!!!!" We have a big fancy date coming up, pictures to follow.
So...yeah. Sasha continues to have near-constant face rash, but it's lesser as long as I don't give her compounded corn-free Naproxen which is hell on steroids in a bottle for whatever reason. And we don't have a follow-up until the end of next month so we're kind of just hanging with everybody's garbage stomachs and rashes and pains and occasional huge accidents and bouts of vomit. But we did just explore the molecular structures of both caffeine and ibuprofen, so that was fun. And the girls' dad is participating in their lives and in my life, pretty much like never before. He will accompany us to our next UCSF appointment. Oh, he also introduced mom and I to our new favorite beverage, hard root beer. His reputation around here is improving.
It's too late in the year to officially enroll Em in the same homeschool as Sasha, but I did have budget left so I managed to order some stuff for her for the end of the year and the summer, since Sasha will have to do some school over summer. These kids have three awake modes: Play, Learn, and Feel Crappy. You can combine the fist two, but the last one trumps all. Since they spend so much time in FC mode, we have to sneak Learning in whenever possible, summer be damned. And if I can get a jump on second and fifth grade, so be it. The plan is to homeschool Em next year as well, barring a miracle of course. The problem with neurologist appointments and trying new levels of new medications is that you have to wait forever to see if they're going to work. And lately, they don't. And suddenly six months have passed and you're not any better. In fact, you're worse. Shoot.
Which brings up one of the main problems with our lifestyle. Aside from dealing with daily pain and illness, how in the world are we supposed to find enough routine to function? I've been wrestling with that one for months now and am just barely starting to figure it out, thanks to Emily officially homeschooling, and my own head being just slightly better enough to think. It means having all your alternate plans ready at any given moment. It's having primary, secondary, tertiary goals, and being completely fine with dumping them all to take care of disaster/s, and then jumping back in to some combination of those goals again if by chance one, both, or all three of you start feeling decent, good, or amazing. Many times a day, every day, without breaks or vacations. And it's not nearly as easy as it sounds.
All your alternate plans for all your goal levels take energy and effort of course. And switching between them also takes energy, as does explaining what happened and why to your kids who are in various states of fits and exhaustion. This lifestyle leaves little time for anything else but breathing and coping. We don't see friends or leave the house much and we have to be ok with that right now. It's not the reality we wanted, but it is the reality we've been handed, so we're going to rock it.
Now that we've embracing homeschool for both kids, we're having more nice moments. I don't have to call Em's school every damn day and have the same sad conversation, or worry about picking up work. And now that I'm officially her teacher, she has to do what I tell her mathematically, mua ha ha...I can't complain tho, because she's into math, reading, and science so I'm not sure what more I could ask for in a student. It's still a struggle due to fatigue, but I'm sufficiently used to struggle. I mean, we're still figuring a lot out, and I didn't get to all the things I wanted to today, but I have learned you can't stress about it. I'm not always going to have a migraine and neither is she, and on the better days we'll do more. Plus I'm learning how to sneak things in, how to make it easy to shove knowledge into their heads and what works for us.
I guess to be completely honest, I have felt a lot more supported lately. A big stressor has elsewhere been lifted. The girls' dad got his head out of his anal region several months ago. He sacked up, parted ways with his heinous she-bag of a baby-momma, got a second job and is almost out of debt, and is even in counseling voluntarily for the first time in his life. He is hellbent on getting his family back and I am not inclined to stop his pursuit. Our friendship has always been intact, and he is addressing every other concern I always had. And I am raking him over the coals about our wretched piece of crap marriage, make no mistake. But certainly there is room for redemption, and he is showing shocking signs of growth and maturity. Shocking. So, this would be new, because everything we had before was garbage. But best of all, he is investing in the girls' lives, and being extremely helpful when he comes to visit. (Like I said, shocking.) I am stuck between too tired to be terribly excited and "For f***'s sake, FINALLY!!!!!" We have a big fancy date coming up, pictures to follow.
So...yeah. Sasha continues to have near-constant face rash, but it's lesser as long as I don't give her compounded corn-free Naproxen which is hell on steroids in a bottle for whatever reason. And we don't have a follow-up until the end of next month so we're kind of just hanging with everybody's garbage stomachs and rashes and pains and occasional huge accidents and bouts of vomit. But we did just explore the molecular structures of both caffeine and ibuprofen, so that was fun. And the girls' dad is participating in their lives and in my life, pretty much like never before. He will accompany us to our next UCSF appointment. Oh, he also introduced mom and I to our new favorite beverage, hard root beer. His reputation around here is improving.
Friday, March 4, 2016
This Is Emily's Mom
The worst part is that my kids are sick, obviously. The second worst part is still being so sick myself. But the next worst part is not being able to get any handle on a routine, except for having to call the damn school every day to say that Emily is staying home with a migraine. That, Sucks. It is so defeating.
Sasha was doing better last month, February. Then she hit this patch. I mean, I've done that I guess, had a good month and paid out the nose for it the next month, but I didn't think that's how it's supposed to work when you're 7 and the new meds just seemed to kick in. And we have schoolwork to do.
I called UCSF today to tell them the new meds aren't working for Emily and that she just doesn't ever go to school anymore because it's finally been 6 weeks which is maybe enough time to change something but maybe not, and no one was there. They just changed facilities splitting the adult headache center from peds and the attending pediatric nurse is away until Monday. So I'll try again then when they're overwhelmed with calls from the weekend.
Meanwhile my new meds may actually be helping! I had about 4 good days in a row which is incredible. Everything's better when I feel better. I can take care of the kids and the house and think straight and everything. But this is why having a routine is so important. So when it hits the fan you at least have something to deviate From and some goal to get back To. And between everyone feeling like different levels of different kinds of crap at different times, we got nothin'. Which wastes time and energy. We don't have good days. I just keep track of how much crap who felt like and how many of what kind of rescue meds they took. And I try to make the kids learn things between threats of vomit, exhaustion, and pain. Which is of course easier to do when I don't have a migraine, or at least have a lesser one.
And then once in a blue moon I'll get an offer of "help" from someone and I just have no idea what to say because what even is there to say? What I need is a personal assistant to handle all my paperwork, and like, a household staff of 7 to organize everything and plant some pear and avocado trees and then of course take care of them and the rest of the garden they'd plant, and in that staff would be someone to finish all the unfinished details on the house like the uneven patch on the floor, the light fixture in the hallway, the living room that needs paint, the trim that's coming off the walls, the plumbing so we could get a dishwasher, and that list just goes on and on. Actually, someone to just help process all the food every Sat/Sun would be nice. But I promise you, no one wants to do that. What people mean by help is...I have no idea what. Easy things. And easy things don't exist in our world.
I just want it to end. Ugh, also Sasha's face is breaking out again. I think she may have had a build-up reaction to the new rescue med we were trying. I'm partly in denial. This can't be our life. It just keeps getting worse. Even when it seems to get better in some way, it just gets worse. I need real change from the root of these problems. Or I may lose my fucking mind.
Sasha was doing better last month, February. Then she hit this patch. I mean, I've done that I guess, had a good month and paid out the nose for it the next month, but I didn't think that's how it's supposed to work when you're 7 and the new meds just seemed to kick in. And we have schoolwork to do.
I called UCSF today to tell them the new meds aren't working for Emily and that she just doesn't ever go to school anymore because it's finally been 6 weeks which is maybe enough time to change something but maybe not, and no one was there. They just changed facilities splitting the adult headache center from peds and the attending pediatric nurse is away until Monday. So I'll try again then when they're overwhelmed with calls from the weekend.
Meanwhile my new meds may actually be helping! I had about 4 good days in a row which is incredible. Everything's better when I feel better. I can take care of the kids and the house and think straight and everything. But this is why having a routine is so important. So when it hits the fan you at least have something to deviate From and some goal to get back To. And between everyone feeling like different levels of different kinds of crap at different times, we got nothin'. Which wastes time and energy. We don't have good days. I just keep track of how much crap who felt like and how many of what kind of rescue meds they took. And I try to make the kids learn things between threats of vomit, exhaustion, and pain. Which is of course easier to do when I don't have a migraine, or at least have a lesser one.
And then once in a blue moon I'll get an offer of "help" from someone and I just have no idea what to say because what even is there to say? What I need is a personal assistant to handle all my paperwork, and like, a household staff of 7 to organize everything and plant some pear and avocado trees and then of course take care of them and the rest of the garden they'd plant, and in that staff would be someone to finish all the unfinished details on the house like the uneven patch on the floor, the light fixture in the hallway, the living room that needs paint, the trim that's coming off the walls, the plumbing so we could get a dishwasher, and that list just goes on and on. Actually, someone to just help process all the food every Sat/Sun would be nice. But I promise you, no one wants to do that. What people mean by help is...I have no idea what. Easy things. And easy things don't exist in our world.
I just want it to end. Ugh, also Sasha's face is breaking out again. I think she may have had a build-up reaction to the new rescue med we were trying. I'm partly in denial. This can't be our life. It just keeps getting worse. Even when it seems to get better in some way, it just gets worse. I need real change from the root of these problems. Or I may lose my fucking mind.
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