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.
Thursday, February 4, 2016
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.
Sunday, November 15, 2015
A Truly Stellar Weekend!
We had a seriously stellar weekend. The main component of stellarness for me was that for two days in a row now, I haven't had a migraine. As someone whose brain is in a constant state of migraine, that's kind of a hard thing to define. Perhaps more accurately, I haven't had any symptoms this weekend beside normal fatigue and light sensitivity, which is to say no nausea, no pain, no brain fog. HUGE STUFF MAN!!! Normal fatigue dictates I still take a nap every day, and normal photophobia says "Always wear your hat and shades outside" but other than that, we did stellar stuff these past two days, I'll tell you all about it.
One of the biggest things we did was really get the girls' toys in the office under control. We have been purging for a while, ever since I went berzerkers when I realized the state of crap their bookshelves were in. They have kept their shelves neat upon threat of pain and dismemberment, and we have just rolled on from there into the office. Several bags of trashed and donated toys later, and everything has and is in a place. [ie not on the floor] Plus I purchased a bomb storage ottoman today (whilst having some Emily time mind you) that even came with internal, adjustable dividers! Target baby, gotta' love Target. Tomorrow I may very well purchase another for the girls' bedroom and their stuffed animals at Sasha's request. I'd like to keep the organization party rolling, don't'cha know?
We also managed general maintenance upon their room, and cleaned out the storage bins under the chalkboard/whiteboard easel. Also we processed food, ran errands, played outside, and did general Sasha migraine management which takes a lot of emotional and physical energy. But basically, it felt so much more akin to normal than any other weekend we've had lately. I think some of us even caught showers or something. OH!!! I also got to hang out with one of my oldest and bestest friends on Friday, who took me out for ice cream. Ice Cream! Did I mention Friday was the day I finished the bitchin' set of cardboard hummingbird wings I made out of nowhere, and mailed off during errands on Saturday?!?!? I'm not joking when I say stellar!
Right about........NOW is when I usually start longing for more days when the migraine stays asleep so I can prance about in this alternate reality where I am a more functional human. Shoot, I even thought about playing the guitar yesterday! A couple more days of this and I actually will. But right now I'm just really happy about the two/three days of awesome we just had. I realize it seems the world is falling apart, but my world falls apart every damn day, at least three times give or take. I just can't bring myself to even be a little bit afraid of terrorism. They are the weak ones you guys, and all they can create is temporary chaos before disappearing into oblivion. When we create anything beautiful, we triumph. I think we have to keep creating, and certainly not be afraid.
Hm. It's always dreadful to feel good for a while, and then get all migrainey again. But perhaps we made real progress in these glorious two/three days. I know within the context of this short and vaporous life, the road sure seems long and torturous. Maybe I'll be able to keep calm and keep creating. Chaos sucks for sure, but I hope we're being as proactive as possible in this fight.
One of the biggest things we did was really get the girls' toys in the office under control. We have been purging for a while, ever since I went berzerkers when I realized the state of crap their bookshelves were in. They have kept their shelves neat upon threat of pain and dismemberment, and we have just rolled on from there into the office. Several bags of trashed and donated toys later, and everything has and is in a place. [ie not on the floor] Plus I purchased a bomb storage ottoman today (whilst having some Emily time mind you) that even came with internal, adjustable dividers! Target baby, gotta' love Target. Tomorrow I may very well purchase another for the girls' bedroom and their stuffed animals at Sasha's request. I'd like to keep the organization party rolling, don't'cha know?
We also managed general maintenance upon their room, and cleaned out the storage bins under the chalkboard/whiteboard easel. Also we processed food, ran errands, played outside, and did general Sasha migraine management which takes a lot of emotional and physical energy. But basically, it felt so much more akin to normal than any other weekend we've had lately. I think some of us even caught showers or something. OH!!! I also got to hang out with one of my oldest and bestest friends on Friday, who took me out for ice cream. Ice Cream! Did I mention Friday was the day I finished the bitchin' set of cardboard hummingbird wings I made out of nowhere, and mailed off during errands on Saturday?!?!? I'm not joking when I say stellar!
Right about........NOW is when I usually start longing for more days when the migraine stays asleep so I can prance about in this alternate reality where I am a more functional human. Shoot, I even thought about playing the guitar yesterday! A couple more days of this and I actually will. But right now I'm just really happy about the two/three days of awesome we just had. I realize it seems the world is falling apart, but my world falls apart every damn day, at least three times give or take. I just can't bring myself to even be a little bit afraid of terrorism. They are the weak ones you guys, and all they can create is temporary chaos before disappearing into oblivion. When we create anything beautiful, we triumph. I think we have to keep creating, and certainly not be afraid.
Hm. It's always dreadful to feel good for a while, and then get all migrainey again. But perhaps we made real progress in these glorious two/three days. I know within the context of this short and vaporous life, the road sure seems long and torturous. Maybe I'll be able to keep calm and keep creating. Chaos sucks for sure, but I hope we're being as proactive as possible in this fight.
Thursday, November 5, 2015
Eggnog Season
Sasha has food.
Sasha will have more food.
I don't have to go to the market tomorrow.
I can stay home and if I don't have a roaring migraine, I can caulk the cracks in the wall by the ceiling beams and we can save some heat and energy this winter.
Sasha felt so nauseated this morning that I had to pull over and find a drinking fountain at a store so she could take meds, because we left the house without her water bottle. We don't risk store bottled water because most of it has corn derivatives added. We survived the errands and managed to do schoolwork today, despite my leftover migraine.
So what do I care about how much funding I have in my homeschool account for lessons Sasha can't take or curriculum we won't use? I have to order flooring tomorrow to patch the bare spot where the weird add-in fireplace used to be. Then, for the five hundred millionth time, I have to call insurance AND the allergist about an issue that started in April when someone somewhere messed something up that started a whole line of screwed up EOBs and incorrect bills that everyone and their mom swore they fixed at least 4 times now, that I just got sent another bill for. I no joke, have a whole file just for this one issue, which is not even related to all the other insurance mistakes that I have been dealing with since Monday. I have been taking my kids to the allergist for 9 fucking years. Nine fucking years, and then that one time there was a glitch in the matrix and now everything's broken.
*weeping desperately* And on Monday...Monday, I take Em to UCSF and beg and plead with the front office to code the damn visit correctly for the attending physician and not the resident so that I don't have to scream and cry at my insurance to get them to understand what's going on, since I promise you, it will be no one else's mistake but mine for having sick kids at the end of the day.
And all this bullshit is how my kids and I are supposed to be getting better?
But Sasha's Avocados are coming in, so there's that. She's out of bed and crying because she feels so crappy, and I'll put some essential oils on her and give her an ice pack and hope that works to get her to sleep, a fairly regular occurrence. But day in, day out, we slide by just barely hanging on, rolling with all the major disasters. The guy pulling the fireplace out could hardly believe how little we cared if the floor patch really matched or not. I tried to explain. *shrug*
It's just hard to believe. I grieved when we lost wheat, and I really grieved when we lost corn. Now I find myself in the cycles of grief over the general state of my life, and I wish to get past it as soon as possible so I get on with pounding through. But so much of me is still in denial. Could this really be how life works? You're sick, your kids are sick. You have insurance, they screw you day in and day out, and no one gets better. The food situation fluctuates but it's never "good", and you have to continue giving a shit about every day stuff like laundry.
Oh, but it's eggnog season. I am genuinely stoked about that. And in an ideal world I have an entire upright freezer dedicated to frozen eggnog to sustain me through the summer. Solar powered, of course, because in my ideal world we're solar, obviously.
Sasha will have more food.
I don't have to go to the market tomorrow.
I can stay home and if I don't have a roaring migraine, I can caulk the cracks in the wall by the ceiling beams and we can save some heat and energy this winter.
Sasha felt so nauseated this morning that I had to pull over and find a drinking fountain at a store so she could take meds, because we left the house without her water bottle. We don't risk store bottled water because most of it has corn derivatives added. We survived the errands and managed to do schoolwork today, despite my leftover migraine.
So what do I care about how much funding I have in my homeschool account for lessons Sasha can't take or curriculum we won't use? I have to order flooring tomorrow to patch the bare spot where the weird add-in fireplace used to be. Then, for the five hundred millionth time, I have to call insurance AND the allergist about an issue that started in April when someone somewhere messed something up that started a whole line of screwed up EOBs and incorrect bills that everyone and their mom swore they fixed at least 4 times now, that I just got sent another bill for. I no joke, have a whole file just for this one issue, which is not even related to all the other insurance mistakes that I have been dealing with since Monday. I have been taking my kids to the allergist for 9 fucking years. Nine fucking years, and then that one time there was a glitch in the matrix and now everything's broken.
*weeping desperately* And on Monday...Monday, I take Em to UCSF and beg and plead with the front office to code the damn visit correctly for the attending physician and not the resident so that I don't have to scream and cry at my insurance to get them to understand what's going on, since I promise you, it will be no one else's mistake but mine for having sick kids at the end of the day.
And all this bullshit is how my kids and I are supposed to be getting better?
But Sasha's Avocados are coming in, so there's that. She's out of bed and crying because she feels so crappy, and I'll put some essential oils on her and give her an ice pack and hope that works to get her to sleep, a fairly regular occurrence. But day in, day out, we slide by just barely hanging on, rolling with all the major disasters. The guy pulling the fireplace out could hardly believe how little we cared if the floor patch really matched or not. I tried to explain. *shrug*
It's just hard to believe. I grieved when we lost wheat, and I really grieved when we lost corn. Now I find myself in the cycles of grief over the general state of my life, and I wish to get past it as soon as possible so I get on with pounding through. But so much of me is still in denial. Could this really be how life works? You're sick, your kids are sick. You have insurance, they screw you day in and day out, and no one gets better. The food situation fluctuates but it's never "good", and you have to continue giving a shit about every day stuff like laundry.
Oh, but it's eggnog season. I am genuinely stoked about that. And in an ideal world I have an entire upright freezer dedicated to frozen eggnog to sustain me through the summer. Solar powered, of course, because in my ideal world we're solar, obviously.
Tuesday, October 20, 2015
TMI-This product may cause sudden explosive diarrhea
Let's talk about sudden, explosive diarrhea. It is uncomfortable, as you might imagine. Or maybe you don't have to imagine, because you've had it, and you are now recalling the circumstances that brought you the feeling of ominous death in your guts, your mad dash to the water closet, and the violent expulsion that ultimately, brought relief.
Grapes are supposed to be a low nickel food. I am way stupid sensitive to nickel in plant based food, so my diet is stupid limited. (because we don't have enough food issues here, apparently) Grapes are about the only convenient fruit I thought was safe. 4 grapes and 4 hours later, I'm not so sure anymore.
In my reading about explosive diarrhea, I learned that your intestines are made of epithelial cells, which are also the type of cells your skin is made of. It makes a little more sense now why nickel runs screaming from my body, since even most doctors still consider nickel allergy to be just a skin contact issue. But in all fairness, even among nickel allergics it usually is.
And while hopefully the vast majority of the excess grape nickel has made its great escape, I must still contend with the residual itch, the small pokey spots that pop up on my face, neck, chest, and arms lest I forget so quickly the consequences of forbidden food.
I am angry. I am upset that at 36 I can learn how to use a real abacus and also teach my migraine-plagued 7 year old, read Don Quixote in Spanish and English, keep everyone's regular pills, migraine journals, food allergies, emergency meds, and doctor appointment straight, and still have no hope for a future until glorious death frees us from the shit bombs known as Today, Tomorrow, and the Next Day. No amount of effort is going to cure any of us of anything. I don't feel like there is much of a point to doing cool nerd things, when what I really need is to have the FUCKING ENERGY TO GROW FOOD. Food I can't eat of course, but that's hardly relevant since it would be food my kid/s can eat. This, this is not life. I walk around in a pretend, fake body, waiting for the end of a pretend, fake world.
We are utterly in God's hands, and God's hands kind of suck right now. I watch my friends go through cycles of life, you know, highs and lows. We don't have cycles, just sick, sicker, and completely non-functional. For years now, that's it! But maybe Sasha will get so obsessed with abacus math that she'll become a mathematician, make lots of money even WITH continual migraine and disabling corn allergy, and be able to start her own corn free farm, thus revolutionizing food in crap America.
And maybe someday crap food America won't be a wretched majority two-party system of government. Hah.
Grapes are supposed to be a low nickel food. I am way stupid sensitive to nickel in plant based food, so my diet is stupid limited. (because we don't have enough food issues here, apparently) Grapes are about the only convenient fruit I thought was safe. 4 grapes and 4 hours later, I'm not so sure anymore.
In my reading about explosive diarrhea, I learned that your intestines are made of epithelial cells, which are also the type of cells your skin is made of. It makes a little more sense now why nickel runs screaming from my body, since even most doctors still consider nickel allergy to be just a skin contact issue. But in all fairness, even among nickel allergics it usually is.
And while hopefully the vast majority of the excess grape nickel has made its great escape, I must still contend with the residual itch, the small pokey spots that pop up on my face, neck, chest, and arms lest I forget so quickly the consequences of forbidden food.
I am angry. I am upset that at 36 I can learn how to use a real abacus and also teach my migraine-plagued 7 year old, read Don Quixote in Spanish and English, keep everyone's regular pills, migraine journals, food allergies, emergency meds, and doctor appointment straight, and still have no hope for a future until glorious death frees us from the shit bombs known as Today, Tomorrow, and the Next Day. No amount of effort is going to cure any of us of anything. I don't feel like there is much of a point to doing cool nerd things, when what I really need is to have the FUCKING ENERGY TO GROW FOOD. Food I can't eat of course, but that's hardly relevant since it would be food my kid/s can eat. This, this is not life. I walk around in a pretend, fake body, waiting for the end of a pretend, fake world.
We are utterly in God's hands, and God's hands kind of suck right now. I watch my friends go through cycles of life, you know, highs and lows. We don't have cycles, just sick, sicker, and completely non-functional. For years now, that's it! But maybe Sasha will get so obsessed with abacus math that she'll become a mathematician, make lots of money even WITH continual migraine and disabling corn allergy, and be able to start her own corn free farm, thus revolutionizing food in crap America.
And maybe someday crap food America won't be a wretched majority two-party system of government. Hah.
Monday, October 12, 2015
The Bottle of my Mind
I slept about a bajillion hours yesterday, which was good because today was a big day full of many errands. The most disconcerting thing I did today was add to Emily's migraine journal. The most fun thing I did today was buy school supplies at Target. The things I am most proud of accomplishing today are hitting two doctor appointments (one for each child) and processing some pears and zucchinis. I don't think today would have been NEARLY as productive if I hadn't slept so much yesterday, and I would not have slept so much yesterday if I hadn't been fighting migraine all weekend. This is not an upside to migraine, but it does make me wonder if I'm a new species, a step backward on the evolutionary ladder if you will.
My brain is still a little...buzzy. It feels fuzzy, but at least it doesn't feel like vomiting anymore. It's the difference between being able to give the definitions to words my kids are constantly asking for, and waving them away. And the evening exhaustion is still a go-and-hide kind, but at least it's not a run-weeping-and-slam-the-door kind. Oh, and I haven't collapsed on the floor at any point today, so bonus.
There's just got to be a better way to get here. And then, *sigh* Em's pediatrician had to point out today that "These are things we don't normally see" at our referral appointment. You know, as I sat there with my one corn allergy kid who already goes to UCSF for uncontrolled migraine, and he's examining my other allergy kid whose migraine monster just woke up, like The Obvious wasn't just staring us in the face but also doesn't have its fingers up our noses; Ya, pretty sure I'm aware nothing about us is normal, which is why we go to the doctor like most people get pizza.
So, another trip to UCSF in November, and another in December, and after that hopefully we can either get the girls appointments aligned or do them over the computer, or align them over the computer. They're all kinds fancy like that. Until then, I've got to teach Em to grit her teeth and cope with the pain, because school exists. She just joined the band too, damn it. Which brings me to our futurecast...
We know a lot more about migraine now than when I was a kid. No one is telling me that Emily either has Leukemia or growing pains, as my mom was told when I was having undiagnosed abdominal migraines as a kid. Sasha is already on better meds than I was on ten years ago, and the fact that Emily will be on her second set of neurologists soon is orders of magnitude beyond where I was at her age. And yet, I still can't imagine anything close to a decent life for either of them. I'm sure this is just me projecting, and by no means do I spend time worrying about their futures. Ain't nobody got time for that mess, it's still pear season for the love of all things holy! But every time we talk about future anything, it feels like pretend.
But we found a really cool notebook at Target today. It has movable tabs, pockets, and even a spot to hold onto your pen. Plus I got a couple of nifty D ring binders for my homeschool schnazz. Still hate homeschool, still love school supplies. Oh, and when we got there, they hadn't even popped the popcorn yet so Sasha didn't have to wear her mask. Double Bonus. Triple bonus, my new organizational paradigm arrives Wednesday.
My brain is still a little...buzzy. It feels fuzzy, but at least it doesn't feel like vomiting anymore. It's the difference between being able to give the definitions to words my kids are constantly asking for, and waving them away. And the evening exhaustion is still a go-and-hide kind, but at least it's not a run-weeping-and-slam-the-door kind. Oh, and I haven't collapsed on the floor at any point today, so bonus.
There's just got to be a better way to get here. And then, *sigh* Em's pediatrician had to point out today that "These are things we don't normally see" at our referral appointment. You know, as I sat there with my one corn allergy kid who already goes to UCSF for uncontrolled migraine, and he's examining my other allergy kid whose migraine monster just woke up, like The Obvious wasn't just staring us in the face but also doesn't have its fingers up our noses; Ya, pretty sure I'm aware nothing about us is normal, which is why we go to the doctor like most people get pizza.
So, another trip to UCSF in November, and another in December, and after that hopefully we can either get the girls appointments aligned or do them over the computer, or align them over the computer. They're all kinds fancy like that. Until then, I've got to teach Em to grit her teeth and cope with the pain, because school exists. She just joined the band too, damn it. Which brings me to our futurecast...
We know a lot more about migraine now than when I was a kid. No one is telling me that Emily either has Leukemia or growing pains, as my mom was told when I was having undiagnosed abdominal migraines as a kid. Sasha is already on better meds than I was on ten years ago, and the fact that Emily will be on her second set of neurologists soon is orders of magnitude beyond where I was at her age. And yet, I still can't imagine anything close to a decent life for either of them. I'm sure this is just me projecting, and by no means do I spend time worrying about their futures. Ain't nobody got time for that mess, it's still pear season for the love of all things holy! But every time we talk about future anything, it feels like pretend.
But we found a really cool notebook at Target today. It has movable tabs, pockets, and even a spot to hold onto your pen. Plus I got a couple of nifty D ring binders for my homeschool schnazz. Still hate homeschool, still love school supplies. Oh, and when we got there, they hadn't even popped the popcorn yet so Sasha didn't have to wear her mask. Double Bonus. Triple bonus, my new organizational paradigm arrives Wednesday.
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