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.
Wednesday, June 22, 2016
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.
Thursday, February 4, 2016
Over
Trying to harness my thoughts into cohesive paragraphs is like trying to force a many-dimensional, multi-colored object onto a single-colored straight line. Like, really? Even if I were Bruce Banner with Thor as my sous chef, I'm not sure I can pull this one off. My mindstone is broken. Emily's mindstone has turned to soup. Sasha's mindstone...well, we were never sure what universe she came from anyway, but it appears that her mindstone is showing the faintest signs of repair.
I'm not even sure where to start unpacking from, but my head hurt from January 20 to February 1. It wasn't all intense, but a lot of it was. An awful lot. I didn't take rescue meds all 13 of those days, but I took meds most of those days. The longest my head has hurt before that was 9 days, so, new record I guess. I wonder if my neurologist is going to be upset at me for not coming in. But there were storms, there was the UCSF trip and then the recovery, and then of course hormone week and recovery and more storms. I just wonder if the REALLY shitty preventatives are in my future because of this. I wonder if this is a bigger deal than I think, a lesser deal, or just kind of where we are. T-minus one week until my next appointment.
Sasha has been on the full dose of her new med since January 16, and the average number of her frequent head pain is down from a 5 to a 2-3. We are going to try a new rescue med to hopefully cut back on possible medicine overuse headaches. She is becoming more functional as a human being too, although she has been behaviorally kind of awful lately. That's probably from trialling a new food we were oh-so-hopeful about. Oh well. We'll take lesser and possibly fewer migraines. One less thing.
Emily is in the shithouse. Something broke. Emily started getting migraines again in October or something and it's just gotten worse and worse and now she's just fatigued every minute of every day and I don't think she's made it to an entire week of school since Christmas break. We've upped the meds and added meds and now we're doing a 504 plan at school as a last-ditch effort to keep her there because God Forbid I have to homeschool her too. But really, I'm already mentally preparing.
So, we're definitely not taking anything day by day. That would require teams of support we just don't have. I'm probably only processing things on an hourly basis. Everything I've ever dreamed of doing has slowly and quietly floated away. I mean, thank God my head hasn't actively hurt for 3 whole damn days now, so I can more effectively manage the girls' pain, nausea, fatigue and fucking irritability, and stress the hell out of myself trying to see that they're educated and oh yeah fed things that won't kill them!
I'm really not sure how we're going to make it one more night, and one more morning, mid-morning, noon, afternoon, and evening. I guess there's always the chance that someone will feel better at some point, and a tiny part of the nightmare will be over for a minute or two.
I'm not even sure where to start unpacking from, but my head hurt from January 20 to February 1. It wasn't all intense, but a lot of it was. An awful lot. I didn't take rescue meds all 13 of those days, but I took meds most of those days. The longest my head has hurt before that was 9 days, so, new record I guess. I wonder if my neurologist is going to be upset at me for not coming in. But there were storms, there was the UCSF trip and then the recovery, and then of course hormone week and recovery and more storms. I just wonder if the REALLY shitty preventatives are in my future because of this. I wonder if this is a bigger deal than I think, a lesser deal, or just kind of where we are. T-minus one week until my next appointment.
Sasha has been on the full dose of her new med since January 16, and the average number of her frequent head pain is down from a 5 to a 2-3. We are going to try a new rescue med to hopefully cut back on possible medicine overuse headaches. She is becoming more functional as a human being too, although she has been behaviorally kind of awful lately. That's probably from trialling a new food we were oh-so-hopeful about. Oh well. We'll take lesser and possibly fewer migraines. One less thing.
Emily is in the shithouse. Something broke. Emily started getting migraines again in October or something and it's just gotten worse and worse and now she's just fatigued every minute of every day and I don't think she's made it to an entire week of school since Christmas break. We've upped the meds and added meds and now we're doing a 504 plan at school as a last-ditch effort to keep her there because God Forbid I have to homeschool her too. But really, I'm already mentally preparing.
So, we're definitely not taking anything day by day. That would require teams of support we just don't have. I'm probably only processing things on an hourly basis. Everything I've ever dreamed of doing has slowly and quietly floated away. I mean, thank God my head hasn't actively hurt for 3 whole damn days now, so I can more effectively manage the girls' pain, nausea, fatigue and fucking irritability, and stress the hell out of myself trying to see that they're educated and oh yeah fed things that won't kill them!
I'm really not sure how we're going to make it one more night, and one more morning, mid-morning, noon, afternoon, and evening. I guess there's always the chance that someone will feel better at some point, and a tiny part of the nightmare will be over for a minute or two.
Saturday, December 12, 2015
Crack
I had the $25.04 to pay for it out of pocket, so it could have been worse. But I was overwhelmed with anger just the same. With everything that comes out of the pharmacy for Sasha having a chunky copay for being compounded, another 25 bucks for a generic med for me that I've been trying to get refilled since Monday is criminal negligence.
Why did my refills run out anyway? I've been on this migraine preventative for years. My next doctor appointment is in a couple of weeks, but somehow I had to get a refill request. This should not have been a big deal. On Monday the pharm started faxing refill requests. By the time I called the doctor's office on Friday to see what was going on, they assured me they'd get it done that day which was nice because I explained that the pharm had been faxing them, that I had an appointment in two weeks, and that I was almost out of meds. By the time I walked into the pharm on Saturday to see what in heck was up, insurance stepped in. The pharm indeed had gotten the prescription, but insurance was refusing to pay without further justification for why I needed this med, which was impossible to obtain, being Saturday.
I have two insurances. I pay money every month for the privilege of medical insurance. I have a life long history of migraine, doctors, neurologists, therapy, and even a week-long hospital stay for migraine. Cue overwhelming sadness, anger, frustration and rage. Having constant neck pain as a lovely new symptom of constant migraine probably wasn't helping.
I'll tell you what, I want that job. I want the job of the person who sits at a desk and writes shitty policy to make it difficult for sick people. I bet they get paid well. Actually, I'm not sure I could even do that job. I mean, I'm creative, but there is no way I saw that one coming. I think that's the worst part of all the mistakes in the medical world, is that it doesn't matter if you follow protocol, you ARE going to get screwed. Protocol is bullshit, there are too many moving parts, and it's corrupted at hell. There is no way to win.
I'll never get the 25 bucks back but way more concerning is the fact that it's 12 days into December and I'm 7 days into rescue meds. December is so typically a completely awful migraine month. There hasn't been a December since I started tracking in 2011 that hasn't stood out as terrible. The only redeeming factor about today was that the kids were happy all day. That does not make everything worth it, as some might suggest. But it was nice, despite Sasha's abdominal migraine pain which was at least treatable. Oh, right. That.
I don't even...*sigh* Speaking of Monday, while at Sasha's latest UCSF appointment, mom as my witness I explicitly stated no less than 6 times that her prescription needed to be written to be compounded corn-free. Her last one from there was written correctly, so I was hoping it wouldn't be an issue. See, this is why I have trust issues. Two neurologists and a nurse FUCKING ASSURED ME it would be sent over correctly, which of course, it fucking wasn't. This only become somewhat of an actual problem instead of just a hassle when I'm supposed to split a tablet in half to follow the titration schedule, which they had conveniently left off the pharmacy instructions. Compounded meds aren't tablets you can split in half, they are powder-filled capsules you don't generally mess with unless you're dumping them into a safer capsule or applesauce or something. (no we don't have applesauce but yes I generally dump them into safer capsules)
I explained to the pharm what happened, and they were able to procure and compound the med without a prescription rewrite HOWEVER since no indication of a titration schedule was included, I was left with expensive 10mg capsules when I needed to start with a 5mg dosage. &^%^$%#$%^^&*()* And since the last thing I wanted to do was 1. call and explain the problem to someone at UCSF and hope they understood 2. get a prescription rewrite 3. wait even longer and pay more money for it to get made since compounding takes days, I just busted out my razor blade, started making lines like a crack head, and split the damn dosages myself. *sigh* I think I'm proud, but I'm not %100 on that one.
So pretty much a typical week. It's hard not to get suicidal when you're doing all this with a constant migraine. I really think having fewer, just FEWER migraines would help so much. To think there was once so much beauty in the world, and that I used to see it, and now there is just pain and sickness...
Why did my refills run out anyway? I've been on this migraine preventative for years. My next doctor appointment is in a couple of weeks, but somehow I had to get a refill request. This should not have been a big deal. On Monday the pharm started faxing refill requests. By the time I called the doctor's office on Friday to see what was going on, they assured me they'd get it done that day which was nice because I explained that the pharm had been faxing them, that I had an appointment in two weeks, and that I was almost out of meds. By the time I walked into the pharm on Saturday to see what in heck was up, insurance stepped in. The pharm indeed had gotten the prescription, but insurance was refusing to pay without further justification for why I needed this med, which was impossible to obtain, being Saturday.
I have two insurances. I pay money every month for the privilege of medical insurance. I have a life long history of migraine, doctors, neurologists, therapy, and even a week-long hospital stay for migraine. Cue overwhelming sadness, anger, frustration and rage. Having constant neck pain as a lovely new symptom of constant migraine probably wasn't helping.
I'll tell you what, I want that job. I want the job of the person who sits at a desk and writes shitty policy to make it difficult for sick people. I bet they get paid well. Actually, I'm not sure I could even do that job. I mean, I'm creative, but there is no way I saw that one coming. I think that's the worst part of all the mistakes in the medical world, is that it doesn't matter if you follow protocol, you ARE going to get screwed. Protocol is bullshit, there are too many moving parts, and it's corrupted at hell. There is no way to win.
I'll never get the 25 bucks back but way more concerning is the fact that it's 12 days into December and I'm 7 days into rescue meds. December is so typically a completely awful migraine month. There hasn't been a December since I started tracking in 2011 that hasn't stood out as terrible. The only redeeming factor about today was that the kids were happy all day. That does not make everything worth it, as some might suggest. But it was nice, despite Sasha's abdominal migraine pain which was at least treatable. Oh, right. That.
I don't even...*sigh* Speaking of Monday, while at Sasha's latest UCSF appointment, mom as my witness I explicitly stated no less than 6 times that her prescription needed to be written to be compounded corn-free. Her last one from there was written correctly, so I was hoping it wouldn't be an issue. See, this is why I have trust issues. Two neurologists and a nurse FUCKING ASSURED ME it would be sent over correctly, which of course, it fucking wasn't. This only become somewhat of an actual problem instead of just a hassle when I'm supposed to split a tablet in half to follow the titration schedule, which they had conveniently left off the pharmacy instructions. Compounded meds aren't tablets you can split in half, they are powder-filled capsules you don't generally mess with unless you're dumping them into a safer capsule or applesauce or something. (no we don't have applesauce but yes I generally dump them into safer capsules)
I explained to the pharm what happened, and they were able to procure and compound the med without a prescription rewrite HOWEVER since no indication of a titration schedule was included, I was left with expensive 10mg capsules when I needed to start with a 5mg dosage. &^%^$%#$%^^&*()* And since the last thing I wanted to do was 1. call and explain the problem to someone at UCSF and hope they understood 2. get a prescription rewrite 3. wait even longer and pay more money for it to get made since compounding takes days, I just busted out my razor blade, started making lines like a crack head, and split the damn dosages myself. *sigh* I think I'm proud, but I'm not %100 on that one.
So pretty much a typical week. It's hard not to get suicidal when you're doing all this with a constant migraine. I really think having fewer, just FEWER migraines would help so much. To think there was once so much beauty in the world, and that I used to see it, and now there is just pain and sickness...
Sunday, November 29, 2015
The 101
Geeze, It's taken since March 2012 to get to my 101st post. I wonder if blogger is counting those few rough drafts that never got posted? I guess I could go back and actually count, or worse read through everything I've written in approximately 4 years of allergy and migraine drama, but maybe I'll do that as an exercise to help me heal emotionally when we're past all this (SNORT!!)! Ok, so probably never. Maybe I'll just brain dump about my stupid Thanksgiving week.
Well, It ended with one of my baby cousins getting married, which wasn't stupid at all. I guess she's a grown up now because it wasn't a child-bride situation. [checks mirror for ever-increasing natural silver highlights] And seeing family is always a mix of joy and exhaustion, like every good thing we have in life these days. It was a beautifully succinct ceremony followed by a lovely brunch, followed by an after party at a cousin's house. By 6pm I was home, collapsed on the floor in front of the heater until I had the energy to crawl into bed. There is no exaggeration in that sentence. Somewhere around 11pm I mustered the energy to get up, change into pjs, brush teeth and head back to bed. (mom dealt with the kids thankfully)
The day was spent mostly explaining our food and med situations, and why we generally don't go places and do things, followed immediately with MORE explanations about why we wouldn't be going places and doing things for Christmas or ever until we get a better handle on everyone's/ANYONE'S migraine/food situations. Fricking exhausting. And the day's exhaustion was compounded by not napping and the fact a friend had already been staying with me for over a week recovering from surgery, with her young son for much of the time. That was a lot of fun let me tell you, but did not contribute to any excess relaxation for the "vacation week". The girls had a blast and there was a lot of migraine. My neck hurt the entire time from switching beds and being out of routine, and now I've been a migraine mess for 3 days.
So when I say stupid Thanksgiving week, it isn't because a lot of awesome didn't happen, it's because I am a trashed mess following it. I feel like we can never get ahead, except for that one good weekend we had, which did made some of the destruction the kids caused together easier to deal with at least. But, we are more removed from evil, evil time change, and minimum pickup weeks are also over with for now. So *fingers crossed* some semblance of routine may soon be possible. But it's back to our regular daily struggle, which at least after this week of insanity will seem like a break. I just wish I had powers to instantly make people's bodies feel how my body feels at any given moment, so I wouldn't have to explain so goddamn much. *snap* Here's how it feels to miss a nap. *snap* Here's how it feels to miss a nap TWICE! *snap* Both kids have a migraine and so do you READYGO!!! *snap* Mind Meld why you look and act 'normal' for some of the day and then seem to instantly lose your shit. *snap* Mind Meld why you aren't coming for Christmas for the third year in a row. *snap* Mind Meld why you hate holidays with 4 different menus in the same household with only 4 human beings in it. *snap* Mind Meld so you don't have to explain, again, why you go to the farmer's market instead of church. (because church is apparently a building)
Which by the way makes me wonder, if my family is so amped about us going back to church, why don't they help us out more? One cousin came over once and it was so amazingly wonderful! I'm not saying they are obligated, but if I have to answer questions and be harassed about it, maybe they could actually do something about our situation beside "praying" for us. What did James say again? I mean, I'm fine with doing life this way, but I'd rather not be harassed about going to a building when I thought people were supposed to visit the sick. But maybe that's just me being bitter about our isolation.
So anyway a new school week starts tomorrow and Sasha wants to continue with biofeedback exercises. We could keep track of her hand temperature and get credit for homeschool, but I don't think I have the effort. She's 7 and I need her to do her own biofeeback so I can do all the food prep and other necessary homeschool crap, and hopefully not get a migraine, and try to grow the greens we lost from one of our safe farms that dropped off the face of the earth. Onward and upward.
Well, It ended with one of my baby cousins getting married, which wasn't stupid at all. I guess she's a grown up now because it wasn't a child-bride situation. [checks mirror for ever-increasing natural silver highlights] And seeing family is always a mix of joy and exhaustion, like every good thing we have in life these days. It was a beautifully succinct ceremony followed by a lovely brunch, followed by an after party at a cousin's house. By 6pm I was home, collapsed on the floor in front of the heater until I had the energy to crawl into bed. There is no exaggeration in that sentence. Somewhere around 11pm I mustered the energy to get up, change into pjs, brush teeth and head back to bed. (mom dealt with the kids thankfully)
The day was spent mostly explaining our food and med situations, and why we generally don't go places and do things, followed immediately with MORE explanations about why we wouldn't be going places and doing things for Christmas or ever until we get a better handle on everyone's/ANYONE'S migraine/food situations. Fricking exhausting. And the day's exhaustion was compounded by not napping and the fact a friend had already been staying with me for over a week recovering from surgery, with her young son for much of the time. That was a lot of fun let me tell you, but did not contribute to any excess relaxation for the "vacation week". The girls had a blast and there was a lot of migraine. My neck hurt the entire time from switching beds and being out of routine, and now I've been a migraine mess for 3 days.
So when I say stupid Thanksgiving week, it isn't because a lot of awesome didn't happen, it's because I am a trashed mess following it. I feel like we can never get ahead, except for that one good weekend we had, which did made some of the destruction the kids caused together easier to deal with at least. But, we are more removed from evil, evil time change, and minimum pickup weeks are also over with for now. So *fingers crossed* some semblance of routine may soon be possible. But it's back to our regular daily struggle, which at least after this week of insanity will seem like a break. I just wish I had powers to instantly make people's bodies feel how my body feels at any given moment, so I wouldn't have to explain so goddamn much. *snap* Here's how it feels to miss a nap. *snap* Here's how it feels to miss a nap TWICE! *snap* Both kids have a migraine and so do you READYGO!!! *snap* Mind Meld why you look and act 'normal' for some of the day and then seem to instantly lose your shit. *snap* Mind Meld why you aren't coming for Christmas for the third year in a row. *snap* Mind Meld why you hate holidays with 4 different menus in the same household with only 4 human beings in it. *snap* Mind Meld so you don't have to explain, again, why you go to the farmer's market instead of church. (because church is apparently a building)
Which by the way makes me wonder, if my family is so amped about us going back to church, why don't they help us out more? One cousin came over once and it was so amazingly wonderful! I'm not saying they are obligated, but if I have to answer questions and be harassed about it, maybe they could actually do something about our situation beside "praying" for us. What did James say again? I mean, I'm fine with doing life this way, but I'd rather not be harassed about going to a building when I thought people were supposed to visit the sick. But maybe that's just me being bitter about our isolation.
So anyway a new school week starts tomorrow and Sasha wants to continue with biofeedback exercises. We could keep track of her hand temperature and get credit for homeschool, but I don't think I have the effort. She's 7 and I need her to do her own biofeeback so I can do all the food prep and other necessary homeschool crap, and hopefully not get a migraine, and try to grow the greens we lost from one of our safe farms that dropped off the face of the earth. Onward and upward.
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