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...
Saturday, December 12, 2015
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.
Friday, October 9, 2015
20 cent October (pair of dimes)
So, I need a moderately convenient way to keep two paper migraine journals, because that's how UCSF rolls. The three different apps on my phone are obnoxious enough, but at least they keep mine, Sasha's, and Emily's separate. And truth be told, I haven't used it for Sasha in a million years because there is no point currently. However, Sasha has two paper migraine journals. Now Emily is going to have the app as well as the UCSF journal, since she started getting abdominal migraines again, and until we actually can get to UCSF, I may as well start getting used to their journaling for her as well as Sasha. Actually, we'll be using those for the foreseeable future.
Fuck. I don't want to carry around a clipboard. Those stupid things are a full sheet of paper each. UCSF is the best place I've ever been to, but their migraine journals suck. First of all, they need to be electronic because IT'S THE YEAR TWO THOUSAND FIFTEEN. Second, I already carry a backpack for everyone's emergency meds, emergency food and water, emergency hats and shades etc., I don't want a bigger one for our flipping migraine journals as well.
There is no pinterest for us. Actually, maybe there is, I just haven't looked. Quick, someone see if there's a pinterest for how to keep all your paper migraine journals and emergency food and meds handy and organized.
I'm afraid I need a new backpack organizational paradigm. Swear swear swear swear swear. Oh wait, undetectable extension charm!!! Shoot, never mind. Blagh. I need...something. You know, Tom Bihn, maker of all things svelte in the bag and organizational department, probably has exactly what I need. *sigh* It'll just cost. But everything costs.
Dear Jesus, please bless us with unlimited energy, health, and money. Amen.
You know, someday I would like to carry a pretty purse, play music, and purchase and wear clothes beside the same jeans and t-shirts I've been wearing for untold years now. Not that I'm upset about my awesome backpack (which i LOVE!!!) or my clothes, but I do miss the music. And the interaction with grown-ups about other stuff beside illness. But I do enjoy the feeling of badassery that comes with canning and preserving food, and surviving the massive shitstorm that is our life. I mean, mainly it sucks missing everything and not talking to friends and family and feeling misunderstood and writing letter after letter and blog after blog about the same thing, but thankfully, we are not without triumph.
Well, I've gotta go pickup some homeschool curriculum, and blow money on a new organizational paradigm. Then of course there is more food prep to do since I'm always behind, this week due to lovely hormone migraine. Change And Let Go, my favorite invisible tattoo is always there to help me roll with it. I Lack Nothing has been less helpful these days, but we're still here I guess. It's probably good I have both, if for nothing else than balance and symmetry. Hah, at least my invisible tattoos are balanced, if nothing else in my life is!
Fuck. I don't want to carry around a clipboard. Those stupid things are a full sheet of paper each. UCSF is the best place I've ever been to, but their migraine journals suck. First of all, they need to be electronic because IT'S THE YEAR TWO THOUSAND FIFTEEN. Second, I already carry a backpack for everyone's emergency meds, emergency food and water, emergency hats and shades etc., I don't want a bigger one for our flipping migraine journals as well.
There is no pinterest for us. Actually, maybe there is, I just haven't looked. Quick, someone see if there's a pinterest for how to keep all your paper migraine journals and emergency food and meds handy and organized.
I'm afraid I need a new backpack organizational paradigm. Swear swear swear swear swear. Oh wait, undetectable extension charm!!! Shoot, never mind. Blagh. I need...something. You know, Tom Bihn, maker of all things svelte in the bag and organizational department, probably has exactly what I need. *sigh* It'll just cost. But everything costs.
Dear Jesus, please bless us with unlimited energy, health, and money. Amen.
You know, someday I would like to carry a pretty purse, play music, and purchase and wear clothes beside the same jeans and t-shirts I've been wearing for untold years now. Not that I'm upset about my awesome backpack (which i LOVE!!!) or my clothes, but I do miss the music. And the interaction with grown-ups about other stuff beside illness. But I do enjoy the feeling of badassery that comes with canning and preserving food, and surviving the massive shitstorm that is our life. I mean, mainly it sucks missing everything and not talking to friends and family and feeling misunderstood and writing letter after letter and blog after blog about the same thing, but thankfully, we are not without triumph.
Well, I've gotta go pickup some homeschool curriculum, and blow money on a new organizational paradigm. Then of course there is more food prep to do since I'm always behind, this week due to lovely hormone migraine. Change And Let Go, my favorite invisible tattoo is always there to help me roll with it. I Lack Nothing has been less helpful these days, but we're still here I guess. It's probably good I have both, if for nothing else than balance and symmetry. Hah, at least my invisible tattoos are balanced, if nothing else in my life is!
Saturday, September 26, 2015
Remember Sucktember
Something happened. Looking back on my migraine journal and blog, I now recall why the phrase Sucktember comes to mind. We here on the central coast enjoy a late summer, basically as soon as real summer starts winding down into fall BAM! And we have gotten hammered this year with heat and fluctuating barometric pressure. My physical therapist specializes in foot, neck and head pain, which is something you can't even do in other parts of the country! It seems we are specialized for head pain, my body is specialized for head pain, and this is the annual month of reckoning, progress be damned.
I had been making great progress since April, typically another arch enemy month. But somewhere between starting homeschool in earnest, learning to can pears, and Sasha tanking, I went from 7 total rescue med days last month to 11 so far this month, the last 4 consecutive. 4 consecutive rescue med days hasn't happened since June, during hormone week when I spent two of those days staring at the great glowing orb above me in the dentist chair, and before that it hadn't happened since February. *string of highly creative expletives*
Pear season is short, gotta can pears for the year. Sasha's new neurologist appointment is Monday, gotta fill out all the appropriate paperwork for that, plan and pack all the food water and meds, and deal with the aftermath of the drive there and back plus the skipped nap. *more expletives* At least the appointment is still a go after the *expletiving* time spent on the phone working out the insurance mix-up. But oh my god, now we are SERIOUSLY homeschooling, and I, COULD, NOT, HATE, HOMESCHOOL, MORE. It is a toxic energy suck. Don't get me wrong, I love education and educating. And boy, does Sasha love learning! Bonus, the homeschool group or whatever I'm using is super supportive and amazing and helpful and wonderful. But [creative expletiving] do we ever not have the health and well-being for it at present. It's just a fucking never-ending nightmare. We need to stop getting migraines to be able to do school PLUS the stupid amounts of food prep required for Sasha's survival! Maybe Monday's appointment will bring the magic bullet that cures my baby...or at least the magic car crash that cures all our ills?
Assuming we don't meet our maker, Sucktember will end and hopefully beyond hope, we can start anew in Rocktober. But if Craptober awaits, then maybe I'll try to grow a moustache in Movember and we'll just take it from there. Maybe Sasha doesn't need to go to first grade at all. Maybe I'm not entirely convinced she's going to survive childhood or have a "productive" adulthood even if she does make it. Probably I should just work on getting her DogLand stories marketed and into print, and put the money away for her so she doesn't die unemployed, homeless, and in pain. So maybe I'll get on that after zucchini season ends and pear season ends. #DogLand2016, assuming survival readygo!
I had been making great progress since April, typically another arch enemy month. But somewhere between starting homeschool in earnest, learning to can pears, and Sasha tanking, I went from 7 total rescue med days last month to 11 so far this month, the last 4 consecutive. 4 consecutive rescue med days hasn't happened since June, during hormone week when I spent two of those days staring at the great glowing orb above me in the dentist chair, and before that it hadn't happened since February. *string of highly creative expletives*
Pear season is short, gotta can pears for the year. Sasha's new neurologist appointment is Monday, gotta fill out all the appropriate paperwork for that, plan and pack all the food water and meds, and deal with the aftermath of the drive there and back plus the skipped nap. *more expletives* At least the appointment is still a go after the *expletiving* time spent on the phone working out the insurance mix-up. But oh my god, now we are SERIOUSLY homeschooling, and I, COULD, NOT, HATE, HOMESCHOOL, MORE. It is a toxic energy suck. Don't get me wrong, I love education and educating. And boy, does Sasha love learning! Bonus, the homeschool group or whatever I'm using is super supportive and amazing and helpful and wonderful. But [creative expletiving] do we ever not have the health and well-being for it at present. It's just a fucking never-ending nightmare. We need to stop getting migraines to be able to do school PLUS the stupid amounts of food prep required for Sasha's survival! Maybe Monday's appointment will bring the magic bullet that cures my baby...or at least the magic car crash that cures all our ills?
Assuming we don't meet our maker, Sucktember will end and hopefully beyond hope, we can start anew in Rocktober. But if Craptober awaits, then maybe I'll try to grow a moustache in Movember and we'll just take it from there. Maybe Sasha doesn't need to go to first grade at all. Maybe I'm not entirely convinced she's going to survive childhood or have a "productive" adulthood even if she does make it. Probably I should just work on getting her DogLand stories marketed and into print, and put the money away for her so she doesn't die unemployed, homeless, and in pain. So maybe I'll get on that after zucchini season ends and pear season ends. #DogLand2016, assuming survival readygo!
Thursday, September 17, 2015
Several Cans
Homeschooling is kicking my ass. Sasha's a great student and apparently I'm a decent teacher. But it takes energy.
Canning pears is kicking my ass. It's not...difficult, but it is meticulous and time-consuming and exact and hot. And it also takes energy.
We should have enough dried zucchini chips soon. 68 half-gallon jars isn't quite enough to get us to next zucchini season, but it's getting close, assuming all our math is correct. Not bad for dehydrating since the middle of June. I wonder how many hours of work that accounts for? Thankfully my mom is the peeling queen. (cue ABBA)
Sasha needs to stop getting migraines. I'm waiting on a transfer to a pediatric headache specialist. [read:Sasha's 3d neurologist, more paperwork] I'd like Sasha to be able to eat more food, sure. But technically she has food to eat, be it stupid limited, stupid expensive, and completely unreasonable to procure. However, she NEEDS to stop getting migraines. It's killing me. Thankfully she still plays and reads and eats and pees and poops. But it's absofuckinglutely killing me, because I have to deal with her and take care of her and give[make] her meds and train her to deal with pain and how to relax and meditate and do occasional vomit cleanup etc., quite often with a migraine myself. We are all going to die if she doesn't stop getting migraines.
And now between homeschool (which I honestly hate because it takes all my energy away) and food prep, I'm climbing back up the migraine ladder again. So I added a new med, we'll see if it helps.
I want Sasha to stop getting migraines and to be able to attend school. Then my limited energy can go toward growing/preserving food/trying to remember what it's like to be a human being. Assuming I have to homeschool her for this entire year and I somehow DON'T get a household staff of any number, I don't see how we are going to come away from this in any sort of good way. Everything costs more time and money and energy than I currently have.
I have a really hard time half-assing things, and there's too much accountability to half-ass school anyway.
We absolutely cannot half-ass food, or Sasha literally will not eat.
I haven't been to pilates in two weeks and I don't see my self going back until pear season is over at the earliest, which sucks and will only NOT help, but something's gotta give and I can't half-ass school or food.
So that's it. One of us has got to stop getting migraines and achieve neuro-typical functionality. That is the only logical answer. <Readygo>
Canning pears is kicking my ass. It's not...difficult, but it is meticulous and time-consuming and exact and hot. And it also takes energy.
We should have enough dried zucchini chips soon. 68 half-gallon jars isn't quite enough to get us to next zucchini season, but it's getting close, assuming all our math is correct. Not bad for dehydrating since the middle of June. I wonder how many hours of work that accounts for? Thankfully my mom is the peeling queen. (cue ABBA)
Sasha needs to stop getting migraines. I'm waiting on a transfer to a pediatric headache specialist. [read:Sasha's 3d neurologist, more paperwork] I'd like Sasha to be able to eat more food, sure. But technically she has food to eat, be it stupid limited, stupid expensive, and completely unreasonable to procure. However, she NEEDS to stop getting migraines. It's killing me. Thankfully she still plays and reads and eats and pees and poops. But it's absofuckinglutely killing me, because I have to deal with her and take care of her and give[make] her meds and train her to deal with pain and how to relax and meditate and do occasional vomit cleanup etc., quite often with a migraine myself. We are all going to die if she doesn't stop getting migraines.
And now between homeschool (which I honestly hate because it takes all my energy away) and food prep, I'm climbing back up the migraine ladder again. So I added a new med, we'll see if it helps.
I want Sasha to stop getting migraines and to be able to attend school. Then my limited energy can go toward growing/preserving food/trying to remember what it's like to be a human being. Assuming I have to homeschool her for this entire year and I somehow DON'T get a household staff of any number, I don't see how we are going to come away from this in any sort of good way. Everything costs more time and money and energy than I currently have.
I have a really hard time half-assing things, and there's too much accountability to half-ass school anyway.
We absolutely cannot half-ass food, or Sasha literally will not eat.
I haven't been to pilates in two weeks and I don't see my self going back until pear season is over at the earliest, which sucks and will only NOT help, but something's gotta give and I can't half-ass school or food.
So that's it. One of us has got to stop getting migraines and achieve neuro-typical functionality. That is the only logical answer. <Readygo>
Sunday, August 23, 2015
There is no aside
Monday:
-Physical Therapy appointment for migraine (Sasha)
-Call Sasha's Neurologist and tell him that her migraines are getting progressively more frequent since switching meds.
Tuesday:
-Physical Therapy appointment for migraine (Me)
-GP appointment so we can get Emily's Epi Pens refilled
I think the rest of the week is pretty clear tho. In that time I need to dive headfirst into homeschooling Sasha for first grade since she's tanking again, and as always, keep processing summer food so she can eat all winter (fingers crossed). Aw shit, I forgot about the phone calls I have to make regarding insurance mistakes about Em's last allergist appointment, and again, insurance mistakenly thinking Sasha has more insurance than she actually has.
^^^^^ All of this right here is why I fantasize about a swift and sudden car wreck taking us all out. I would think only having 5 migraine rescue med days so far this month would really be helping things, and maybe it has been. But being able to see things more clearly isn't always such a snappy thing, you feel? I have not figured out how the special needs moms do it. I would imagine there is some focus on the positive aspects of living life. *cricket, cricket* I know it could be worse, it could always be worse.
I think probably the "invisible diseases" aspect of our live is hard. You can't tell by looking at us that something is wrong. You wouldn't know that Sasha can't drink bottled water or play outside for too long without having a reaction or getting a migraine. You wouldn't know that I have to take a nap every day at the same time without fail (which is a hell of a lot harder than it sounds) or I get a migraine, or if I overexert myself I get a migraine, or if the lights are too bright or if it's too hot or if it's hormone week or if I get sick, I get a migraine. You wouldn't look at us and know that none of us can eat the same foods without itching, having diarrhea, getting rashes, losing our minds, or going into anaphylactic shock. So actually, all of This is why I fantasize about that swift and sudden car wreck. That other stuff is just icing on the damn cake that no one can eat.
I don't know how the other special needs mom explain everything to everyone all the time. I'm not even talking about ogling strangers, I mean just catching people up since it's so hard to keep up! And also because our problems are so bizarre, some people can't seem to remember what I tell them anyway. And then there's the doubters, the justification I sometimes feel the need to give. You know, when people can't wrap their minds around your life, so you get the vibe that they're blaming you somehow, like maybe it's all in your head. "Are you SURE? Because (I have a friend who..., I read somewhere..., I found this website etc.) I envy those who get to have normal conversations, like about where they went, what they did, and what they ate. My god...
So all that aside, all, that, aside...
-Physical Therapy appointment for migraine (Sasha)
-Call Sasha's Neurologist and tell him that her migraines are getting progressively more frequent since switching meds.
Tuesday:
-Physical Therapy appointment for migraine (Me)
-GP appointment so we can get Emily's Epi Pens refilled
I think the rest of the week is pretty clear tho. In that time I need to dive headfirst into homeschooling Sasha for first grade since she's tanking again, and as always, keep processing summer food so she can eat all winter (fingers crossed). Aw shit, I forgot about the phone calls I have to make regarding insurance mistakes about Em's last allergist appointment, and again, insurance mistakenly thinking Sasha has more insurance than she actually has.
^^^^^ All of this right here is why I fantasize about a swift and sudden car wreck taking us all out. I would think only having 5 migraine rescue med days so far this month would really be helping things, and maybe it has been. But being able to see things more clearly isn't always such a snappy thing, you feel? I have not figured out how the special needs moms do it. I would imagine there is some focus on the positive aspects of living life. *cricket, cricket* I know it could be worse, it could always be worse.
I think probably the "invisible diseases" aspect of our live is hard. You can't tell by looking at us that something is wrong. You wouldn't know that Sasha can't drink bottled water or play outside for too long without having a reaction or getting a migraine. You wouldn't know that I have to take a nap every day at the same time without fail (which is a hell of a lot harder than it sounds) or I get a migraine, or if I overexert myself I get a migraine, or if the lights are too bright or if it's too hot or if it's hormone week or if I get sick, I get a migraine. You wouldn't look at us and know that none of us can eat the same foods without itching, having diarrhea, getting rashes, losing our minds, or going into anaphylactic shock. So actually, all of This is why I fantasize about that swift and sudden car wreck. That other stuff is just icing on the damn cake that no one can eat.
I don't know how the other special needs mom explain everything to everyone all the time. I'm not even talking about ogling strangers, I mean just catching people up since it's so hard to keep up! And also because our problems are so bizarre, some people can't seem to remember what I tell them anyway. And then there's the doubters, the justification I sometimes feel the need to give. You know, when people can't wrap their minds around your life, so you get the vibe that they're blaming you somehow, like maybe it's all in your head. "Are you SURE? Because (I have a friend who..., I read somewhere..., I found this website etc.) I envy those who get to have normal conversations, like about where they went, what they did, and what they ate. My god...
So all that aside, all, that, aside...
Tuesday, July 28, 2015
grain of joy
My biggest remotely attainable dream right now is to have a worship night at my house, I think. As in, I think it's attainable, maybe. Damn it, ok probably not, but that's why it's a dream. But it's not like my dream of the girls and my mom and I running a marathon together while eating cheap, nut-laden protein bars. That's more like a "fantasy". Stranger things than worship night at my house have actually happened. You know, like when I got paid for working in the field of my degree and shit like that.
Speaking of paying, here's a fun fact. I'm now taking half the amount of meds I was taking before, milligrams wise. And I'm paying almost 7 times the amount for it. Same medication, smaller pill, fewer milligrams. Because insurance. *facepalm* Yup, still working on that one in my infinite spare time and energy, when I'm not making food for Sasha, or getting migraines. Please you guys, don't ever EVER get any kind of sick ever. Also exciting is that two weeks after Sasha saw her neurologist, she finally started her new prescription. (because the stupid compounding pharmacy dragged their ****ing feet) It's going to take an entire month to wean from the old one tho, so hell if I'm going to know for sure how the new one's affecting her for a good long time. Convenient, since school begins fairly shortly.
My God, school. Maybe Sasha will magically stop getting migraines and not have any new face or body rash. That would be awesome. Maybe she really WILL enter first grade and all I'll have to do is figure out how to feed her at school and keep her safe from corn and fight all Emily's school-food battles too! You know, our lives would be infinitely easier if Sasha could even eat all the available local corn-free food. She could have apples, berries, kiwi, persimmon, beans of all sorts, tomatoes, winter squash, stone fruits, eggs, I mean the list is huge. But for whatever fucking reason, all those foods drive her insane. She absolutely loses her mind and becomes completely unreasonable and throws fits. But, at least now she now has a Physical Therapist who is a Giants fan, who bonus, has an office dog. No one local (who takes her insurance) will see a 6-year-old for Biofeedback so she just got referred to physical therapy instead. Again, don't get sick, and don't let your kids get sick.
See, this right here is why I need a worship night. The problem is, I haven't seen a great reduction in migraine medicine days this month vs the last two. If I can go the next 4 days sans meds tho, it'll be the first time I've had fewer than 10 rescue med days in a month in 2 years, since July 2013. I'm still paying out the nose energy-wise the next day for any more functional days, which is a potential problem with worship night, or in fact any awesome activity requiring effort. And being the limited, drought ridden zucchini season, we're bustin' tail over here to process as much as we can for winter, since it's one of the few foods Sasha can eat that's not a leafy green. And as anyone who as ever busted tail can tell you, it takes quite a bit of effort.
A friend of mine asked recently how many doctors I had seen. I had never stopped to count before and it turns out, more and more just kept coming to mind over the next several days. Between the girls and I and GPs, Allergists, Neurologists, Chiropractors etc, I had officially lost count. I like Sasha's Physical Therapist. He wrote down short term and long term goals, made good eye contact, was a good listener etc. Beside that he had a picture of Matt Cain throwing his perfect game on the wall. I am afraid our medical personnel parade is never going to end, and I don't know how to survive like this. It sure feels like something has to change but I know people live in lots worse circumstances than us. I also know that we were not mean to live in a constant state of haggard, worn, pained, and beaten.
Oh well. Soup(made of greens), zucchini, cabbage, lettuce, broccoli, cheese(one kind), frozen avocado, and fish. For these I am truly and utterly grateful.
Speaking of paying, here's a fun fact. I'm now taking half the amount of meds I was taking before, milligrams wise. And I'm paying almost 7 times the amount for it. Same medication, smaller pill, fewer milligrams. Because insurance. *facepalm* Yup, still working on that one in my infinite spare time and energy, when I'm not making food for Sasha, or getting migraines. Please you guys, don't ever EVER get any kind of sick ever. Also exciting is that two weeks after Sasha saw her neurologist, she finally started her new prescription. (because the stupid compounding pharmacy dragged their ****ing feet) It's going to take an entire month to wean from the old one tho, so hell if I'm going to know for sure how the new one's affecting her for a good long time. Convenient, since school begins fairly shortly.
My God, school. Maybe Sasha will magically stop getting migraines and not have any new face or body rash. That would be awesome. Maybe she really WILL enter first grade and all I'll have to do is figure out how to feed her at school and keep her safe from corn and fight all Emily's school-food battles too! You know, our lives would be infinitely easier if Sasha could even eat all the available local corn-free food. She could have apples, berries, kiwi, persimmon, beans of all sorts, tomatoes, winter squash, stone fruits, eggs, I mean the list is huge. But for whatever fucking reason, all those foods drive her insane. She absolutely loses her mind and becomes completely unreasonable and throws fits. But, at least now she now has a Physical Therapist who is a Giants fan, who bonus, has an office dog. No one local (who takes her insurance) will see a 6-year-old for Biofeedback so she just got referred to physical therapy instead. Again, don't get sick, and don't let your kids get sick.
See, this right here is why I need a worship night. The problem is, I haven't seen a great reduction in migraine medicine days this month vs the last two. If I can go the next 4 days sans meds tho, it'll be the first time I've had fewer than 10 rescue med days in a month in 2 years, since July 2013. I'm still paying out the nose energy-wise the next day for any more functional days, which is a potential problem with worship night, or in fact any awesome activity requiring effort. And being the limited, drought ridden zucchini season, we're bustin' tail over here to process as much as we can for winter, since it's one of the few foods Sasha can eat that's not a leafy green. And as anyone who as ever busted tail can tell you, it takes quite a bit of effort.
A friend of mine asked recently how many doctors I had seen. I had never stopped to count before and it turns out, more and more just kept coming to mind over the next several days. Between the girls and I and GPs, Allergists, Neurologists, Chiropractors etc, I had officially lost count. I like Sasha's Physical Therapist. He wrote down short term and long term goals, made good eye contact, was a good listener etc. Beside that he had a picture of Matt Cain throwing his perfect game on the wall. I am afraid our medical personnel parade is never going to end, and I don't know how to survive like this. It sure feels like something has to change but I know people live in lots worse circumstances than us. I also know that we were not mean to live in a constant state of haggard, worn, pained, and beaten.
Oh well. Soup(made of greens), zucchini, cabbage, lettuce, broccoli, cheese(one kind), frozen avocado, and fish. For these I am truly and utterly grateful.
Wednesday, July 1, 2015
Mehtter
We are better. It has taken most of June for me to realize this, and it's still hard to type as I sit here with my stomach hurting, also having had to give Sasha rescue meds today because we ventured to the aquarium thus "overdoing it." But the numbers are good despite how our bodies feel today.
Ow. Ow. Ow. (says the abdominal migraine) Since going to the hospital for DHE infustions that week in May, I can actually combat some migraines with rest a la years gone by. As in, my head can even go so far as hurting a little, and I can lay down and the migraine might even go away with time instead of taking me out for several days by then. Incredible! That hasn't happened in years. And when I'm not in pain or fighting an active migraine, I am a more functional human being. Still not a normal level of function mind you, but more functional than I have been in months, and any amount of progress is good.
I might even have had several fewer med days this month than last except that I had a dentist appointment one day for cleaning, and then a small cavity filled the next. Two days of people digging in my face and staring at a great glowing orb equals four days of bonus migraine, apparently, but what are ya' gonna do? I have one more small cavity that needs filling on the opposite side of my face next week, wish me luck. They approve my brushing and flossing habits, so how did those even happen anyway?! Maybe something about me not going to the dentist in several years had something to do with it, I don't know.
Stupid stomach, stop hurting!! So anyway, I guess 10 rescue med days a month is well enough to start weaning off the gross amount of anti-seizure meds I'm on. The latest studies show that unless you're an outlier, there really isn't a benefit to being on ten billion milligrams per day like I am. So we'll see how that goes. Of course, abdominal migraine in adults is also rare. Also my new prescription never made it over to the pharm. Did I mention I have a phobia about insurance/medical mistakes? This one will be fixed soon I hope. There's a rumor that backing off on the meds may lead to me having more energy, assuming I don't go all migraineville like every other time we've tried backing off on the meds. But I'm better now, right?! [totally NOT panicking. (0.o)]
Had a fun new pre-migraine symptom today: Not being able to comprehend what other people are saying. It's much more normal to not be able to get words out correctly, and I understand the two are related. I've just never had it happen to me before. I mean, I've had a hard time paying attention to what my mom is trying to tell me before if I'm not feeling well, but this just seemed more pronounced. Normally I feel worse if it's going to be so hard to follow, but tonight I just had no idea what the girls were trying to tell me for a while. Stupid brains. But in happier news, the piano has been unearthed and I have been playing it. So there, suck that Aphasia!
And my dear Sasha. We upped the new meds and she stopped needing rescue meds every damn day! Also her face broke out in unending rash. So I fiddled with a different capsule and it got a bit better, and now I'm fiddling with a different filler. Again, with us luck. Sasha is doing way better on the migraine front unless we leave the house or go anywhere or do anything. So that puts a damper on my getting-her-into-first-grade plans. I mean, progress rules, so I'm stoked that she's not getting medicine overuse headaches from daily caffeine or anything, but...damn it she's SIX YEARS OLD!!!!! I want more for her than perpetual face rash and being stuck at home with me.
So I guess life isn't the toxic wasteland of several months ago. There are fewer rescue meds and more music. No one's life is in imminent danger. But I have more fear than anything. More like trepidation and dread about the long term. I don't bow to it, but all day every day it's there. Even when it's underfoot it's never far. There is little peace in an existence like this. There is jealousy, bitterness, and a hell of a lot of coveting. But I'll take any amount of progress, and I'm very glad we're not where we were. I do hope we keep getting better.
Ow. Ow. Ow. (says the abdominal migraine) Since going to the hospital for DHE infustions that week in May, I can actually combat some migraines with rest a la years gone by. As in, my head can even go so far as hurting a little, and I can lay down and the migraine might even go away with time instead of taking me out for several days by then. Incredible! That hasn't happened in years. And when I'm not in pain or fighting an active migraine, I am a more functional human being. Still not a normal level of function mind you, but more functional than I have been in months, and any amount of progress is good.
I might even have had several fewer med days this month than last except that I had a dentist appointment one day for cleaning, and then a small cavity filled the next. Two days of people digging in my face and staring at a great glowing orb equals four days of bonus migraine, apparently, but what are ya' gonna do? I have one more small cavity that needs filling on the opposite side of my face next week, wish me luck. They approve my brushing and flossing habits, so how did those even happen anyway?! Maybe something about me not going to the dentist in several years had something to do with it, I don't know.
Stupid stomach, stop hurting!! So anyway, I guess 10 rescue med days a month is well enough to start weaning off the gross amount of anti-seizure meds I'm on. The latest studies show that unless you're an outlier, there really isn't a benefit to being on ten billion milligrams per day like I am. So we'll see how that goes. Of course, abdominal migraine in adults is also rare. Also my new prescription never made it over to the pharm. Did I mention I have a phobia about insurance/medical mistakes? This one will be fixed soon I hope. There's a rumor that backing off on the meds may lead to me having more energy, assuming I don't go all migraineville like every other time we've tried backing off on the meds. But I'm better now, right?! [totally NOT panicking. (0.o)]
Had a fun new pre-migraine symptom today: Not being able to comprehend what other people are saying. It's much more normal to not be able to get words out correctly, and I understand the two are related. I've just never had it happen to me before. I mean, I've had a hard time paying attention to what my mom is trying to tell me before if I'm not feeling well, but this just seemed more pronounced. Normally I feel worse if it's going to be so hard to follow, but tonight I just had no idea what the girls were trying to tell me for a while. Stupid brains. But in happier news, the piano has been unearthed and I have been playing it. So there, suck that Aphasia!
And my dear Sasha. We upped the new meds and she stopped needing rescue meds every damn day! Also her face broke out in unending rash. So I fiddled with a different capsule and it got a bit better, and now I'm fiddling with a different filler. Again, with us luck. Sasha is doing way better on the migraine front unless we leave the house or go anywhere or do anything. So that puts a damper on my getting-her-into-first-grade plans. I mean, progress rules, so I'm stoked that she's not getting medicine overuse headaches from daily caffeine or anything, but...damn it she's SIX YEARS OLD!!!!! I want more for her than perpetual face rash and being stuck at home with me.
So I guess life isn't the toxic wasteland of several months ago. There are fewer rescue meds and more music. No one's life is in imminent danger. But I have more fear than anything. More like trepidation and dread about the long term. I don't bow to it, but all day every day it's there. Even when it's underfoot it's never far. There is little peace in an existence like this. There is jealousy, bitterness, and a hell of a lot of coveting. But I'll take any amount of progress, and I'm very glad we're not where we were. I do hope we keep getting better.
Friday, June 5, 2015
5 of 6
I'm not sure how we survived today, but we did. I guess it was a series of unscheduled naps, new meds, good old fashioned sucking up the pain, and plenty of the usual awkward conversation. And as much as I hated the aberration in schedule among other things, I'm glad we did it, and I'm glad it's over. We survived the last gd surprise food of the school year *huge eye roll*, and we are officially on summer break, even my mom.
I met a nice parent today, one I don't usually talk to. I suppose that's why she assumed I was married. (never do that plz) That's probably also why the fact that I homeschool one kid for medical reasons came up. She got my address to invite us to a summer birthday party, even after our conversations about food allergies, but I don't know if it's because she said she wanted it at the beginning of the the conversation and she felt obligated or what. Thankfully I didn't spend the whole conversation having to explain our life, so we'll see. I mean, just most of it. But the fact I had a whole conversation is probably a triumph.
See, today is Friday and that normally has us locked in to the Friday farmers market, rain or shine, school activity, migraine or otherwise. But since Sasha failed the blueberries and more people are selling zucchinis now, the Saturday and Sunday markets are more viable shopping options. Selling point one. Also Sasha has been 6 consecutive days without coffee, and 5 of 6 days without any rescue meds at all. Selling point two. HUGE selling point actually. But Debbie Downering the whole thing is the fact that my noggin's been aching for a few days. *smh* But being the last day of school with bonus surprise food I was alerted to at 6:50 this morning, I figured I could suck it up since the other stars were aligned. I'm not sorry. We made it, and Lord willing we'll be able to get all the food we need for Sasha this week between the Saturday and Sunday markets, and if we're really lucky, just the Saturday market.
Seriously, I've been praying and screaming at God for some sort of progress somewhere, anywhere be it food or on the migraine front. Emily has been cruising since December of 2013, and since we cut the gluten and dairy, she has really been doing well. She has even remarked that she can run faster and longer, and keep up with the other kids while playing soccer, not to mention her way improved behavior. Now she's back to her normal stubborn self as opposed to her super awful self. But for Sasha to be nearly a week without rescue meds is something I didn't know if I'd ever see. It's such an intimidating way to live, with these monsters in your brain, and in your children's brains. It's just a waiting game now, wondering how well the meds will work for how long. The monsters will never go away.
I feel like today was sort of like learning how to swim. I've just had to hold on to the wall for so long, and for the first time in a long time, I was able to let go for just a moment. I splashed around, got a stitch in my side, swallowed a bunch of water, and got back to the side as quickly as possible. I definitely had to take rescue meds when we got home today, and I'm still waiting for the DHE to kick in fully. Two more weeks and we'll see. But I've got more physical therapy coming, and I'm going to meditate my face off if it kills me. If Sasha is feeling human again, that really opens up some options, even if her diet is still insanely limited.
I do hope my head stops hurting tomorrow. We have a lot of cleaning and we'll have a lot of food processing to do. Plus it sucks ass when your head has hurt for days and days in a row. Also I want to enjoy the excitement of life again. I remember loving life, rafting, swimming the rapids, and jumping off rocks into the water even though it scared me. Holy geeze, I used to surf! Never very well at ALL, but I would dream of being tumbled in a wave and those were good dreams. It would be great to get back in the water tomorrow.
I met a nice parent today, one I don't usually talk to. I suppose that's why she assumed I was married. (never do that plz) That's probably also why the fact that I homeschool one kid for medical reasons came up. She got my address to invite us to a summer birthday party, even after our conversations about food allergies, but I don't know if it's because she said she wanted it at the beginning of the the conversation and she felt obligated or what. Thankfully I didn't spend the whole conversation having to explain our life, so we'll see. I mean, just most of it. But the fact I had a whole conversation is probably a triumph.
See, today is Friday and that normally has us locked in to the Friday farmers market, rain or shine, school activity, migraine or otherwise. But since Sasha failed the blueberries and more people are selling zucchinis now, the Saturday and Sunday markets are more viable shopping options. Selling point one. Also Sasha has been 6 consecutive days without coffee, and 5 of 6 days without any rescue meds at all. Selling point two. HUGE selling point actually. But Debbie Downering the whole thing is the fact that my noggin's been aching for a few days. *smh* But being the last day of school with bonus surprise food I was alerted to at 6:50 this morning, I figured I could suck it up since the other stars were aligned. I'm not sorry. We made it, and Lord willing we'll be able to get all the food we need for Sasha this week between the Saturday and Sunday markets, and if we're really lucky, just the Saturday market.
Seriously, I've been praying and screaming at God for some sort of progress somewhere, anywhere be it food or on the migraine front. Emily has been cruising since December of 2013, and since we cut the gluten and dairy, she has really been doing well. She has even remarked that she can run faster and longer, and keep up with the other kids while playing soccer, not to mention her way improved behavior. Now she's back to her normal stubborn self as opposed to her super awful self. But for Sasha to be nearly a week without rescue meds is something I didn't know if I'd ever see. It's such an intimidating way to live, with these monsters in your brain, and in your children's brains. It's just a waiting game now, wondering how well the meds will work for how long. The monsters will never go away.
I feel like today was sort of like learning how to swim. I've just had to hold on to the wall for so long, and for the first time in a long time, I was able to let go for just a moment. I splashed around, got a stitch in my side, swallowed a bunch of water, and got back to the side as quickly as possible. I definitely had to take rescue meds when we got home today, and I'm still waiting for the DHE to kick in fully. Two more weeks and we'll see. But I've got more physical therapy coming, and I'm going to meditate my face off if it kills me. If Sasha is feeling human again, that really opens up some options, even if her diet is still insanely limited.
I do hope my head stops hurting tomorrow. We have a lot of cleaning and we'll have a lot of food processing to do. Plus it sucks ass when your head has hurt for days and days in a row. Also I want to enjoy the excitement of life again. I remember loving life, rafting, swimming the rapids, and jumping off rocks into the water even though it scared me. Holy geeze, I used to surf! Never very well at ALL, but I would dream of being tumbled in a wave and those were good dreams. It would be great to get back in the water tomorrow.
Wednesday, May 27, 2015
l'Hôpital
So, hospital week. My left arm looks like it's been run over by a car. There is tape remnant all over it as well as the other arm and my torso from the heart monitor, but my left arm is bruised up from the failed IV attempts. And that tape is nasty crap that doesn't come off but with a hard scrubbing with alcohol. Actually, 5 days out and some of it is starting to pick off, but only just. I try to wear long sleeves so as not to be reminded of my stay. I'll tell you the good things first.
1. Everyone was super nice. That goes from my doctor to every single nurse to the kitchen staff to the lady who cleaned the room. Absolutely stellar. I felt very cared for and I couldn't ask for better.
2. The food was good, tho I had no appetite for it.
3. I had some lovely visits from friends and family, and of course my mom brought my babies to see me every day and sometimes twice.
Everything else about my stay sucked. I threw up a couple of times while we tried to figure out how to best get the DHE into my system. We got it figured out finally, and then had to stay on top of another common side effect, diarrhea. So basically it was coming out both ends. This required meds on meds on meds, which meant all the stuff I brought to occupy me was worthless, as I was a giant med zombie the whole time, stuck in a room, attached to wires coming off both arms and my chest. This is an interesting conundrum because while you're wired and drugged, they want you to "get up and move around" so you don't get blood clots in your legs and die.
So besides having things coming out both ends while simultaneously being covered in wires, then having to keep said wires out of the toilet during clean up, I had to be a giant wired med-zombie, stuck in a room, forcing myself to walk back and forth, back and forth, back and forth. For 5 days. I watched 3 movies, read a few pages of one book that I brought, and that's all. Oh, I did manage to knit a little on my super easiest knitting. Gah, even writing and proofreading about it makes my stomach a little nauseated...
It was challenging to not lose it. The nurses kept trying to entice me to eat and kept asking if I wanted crackers or a starbucks run. I just wanted to go home. It was such a mental battle. Good thing my mentals are used to battling.
Oh, and forget any meaningful sleep while in hospital, so throw that onto the med zombie. So when I got home, I crashed for a couple of days, and kept waking up thinking I was still attached to wires. Then yesterday I had to take Sasha to her follow up at Standford, where I learned we will be upping the dosage of her new useless meds by 50%, in the hopes that somehow THIS time they will work. That was so worth the all night migraine I had. *eye roll*
So anyway, the DHE infusions I endured at the hospital for 5 days can take up to a month to kick in. But already I feel different. More functional to be sure. It's hard to know how to take life at this point since I tend to overdo things the minute I am able. I had to take Sasha to Stanford, so that one's on the universe. It'll be interesting to see how things progress from here. I'm hoping for no more migraines obviously. I'll be keeping up with the physical therapy for now, and waiting for the infusions to kick in. Thankfully it was a one and done situation, where I don't EVER have to go back to the hospital for that. I swear I will never take peeing for granted again.
1. Everyone was super nice. That goes from my doctor to every single nurse to the kitchen staff to the lady who cleaned the room. Absolutely stellar. I felt very cared for and I couldn't ask for better.
2. The food was good, tho I had no appetite for it.
3. I had some lovely visits from friends and family, and of course my mom brought my babies to see me every day and sometimes twice.
Everything else about my stay sucked. I threw up a couple of times while we tried to figure out how to best get the DHE into my system. We got it figured out finally, and then had to stay on top of another common side effect, diarrhea. So basically it was coming out both ends. This required meds on meds on meds, which meant all the stuff I brought to occupy me was worthless, as I was a giant med zombie the whole time, stuck in a room, attached to wires coming off both arms and my chest. This is an interesting conundrum because while you're wired and drugged, they want you to "get up and move around" so you don't get blood clots in your legs and die.
So besides having things coming out both ends while simultaneously being covered in wires, then having to keep said wires out of the toilet during clean up, I had to be a giant wired med-zombie, stuck in a room, forcing myself to walk back and forth, back and forth, back and forth. For 5 days. I watched 3 movies, read a few pages of one book that I brought, and that's all. Oh, I did manage to knit a little on my super easiest knitting. Gah, even writing and proofreading about it makes my stomach a little nauseated...
It was challenging to not lose it. The nurses kept trying to entice me to eat and kept asking if I wanted crackers or a starbucks run. I just wanted to go home. It was such a mental battle. Good thing my mentals are used to battling.
Oh, and forget any meaningful sleep while in hospital, so throw that onto the med zombie. So when I got home, I crashed for a couple of days, and kept waking up thinking I was still attached to wires. Then yesterday I had to take Sasha to her follow up at Standford, where I learned we will be upping the dosage of her new useless meds by 50%, in the hopes that somehow THIS time they will work. That was so worth the all night migraine I had. *eye roll*
So anyway, the DHE infusions I endured at the hospital for 5 days can take up to a month to kick in. But already I feel different. More functional to be sure. It's hard to know how to take life at this point since I tend to overdo things the minute I am able. I had to take Sasha to Stanford, so that one's on the universe. It'll be interesting to see how things progress from here. I'm hoping for no more migraines obviously. I'll be keeping up with the physical therapy for now, and waiting for the infusions to kick in. Thankfully it was a one and done situation, where I don't EVER have to go back to the hospital for that. I swear I will never take peeing for granted again.
Thursday, April 23, 2015
Two Year Cocktail
Stranger things have happened I guess. The last time I went four days in a row without rescue meds was November of last year. Today is pushing six days sans the meds, which might actually be a two year record. What feels different about this stretch is that I'm still tired. I still don't feel good, and I guess that's what gives me hope. Maybe that's what's even prolonging it. Typically I start to feel good, see the madness around me and do what I can to overcome it in any degree, and then sink again into migraine. So maybe Topamax plus Melatonin is my magic cocktail, for now anyway.
Cured I am not yet but if you can break that cycle and give the brain a chance to stop going crazy, it can only be a good thing. And I count it a victory for sure, even tho nothing's been planted in the garden and I don't feel six days worth of productive in a typical sense. Six days doesn't erase a life long battle with migraine, nor sixteen years of chronic insano migraine brain. But interestingly enough, it came just in time to deal with a few things.
One of those things is early hormone week. Like, really early hormone week. Is that a side-effect of Melatonin? I'll have to do some more research. I don't have all the things memorized on that shnazz yet. Still, I haven't run into the typical hormone migraine, and that's unheard of. Absolutely unheard of except for one other time in the past sixteen years so, bonus. Another fun thing I've been dealing with is Sasha's stomach. A week into doubling her new med, her migraine has gone mostly abdominal. Well, it starts abdominal and then moves into her head for the evening. I'm going to call it progress because at least we're messing with her. And that means Sasha and I have been trying to avoid her rescue meds all day with ice, essential oils, baths, and general distraction. That takes effort, lemme tell you. That goes on top of the constant feeding, of course.
But probably the most eye-rolling thing to deal with this week is the girls' dad's baby-momma. She got it in her head to be upset with me and I'm not really sure why. I think it has mainly to do with the fact that she is followed around by a life time of bad decisions which include the fact that my worst decision (steven) is her best one, and he still owes me money. So out of nowhere she started facebook messaging me. (: It's mostly hilarious, but also mildly distracting from my real life. I emailed her third baby daddy (steven) and asked him to take care of it, and to remind her that I've paid off his credit card twice, and put money into his bank account a few time. *huge eye roll* But who's keeping score? Not her apparently.
So I guess all told, not a bad week? I mean, yes more (forever and ever) asinine school emails about food in the class, and no, we're not all cured from migraine and yes we all still eat like the freaks we are, but it could be and has been worse. Did I forget to mention the birthday food again with the late notice change of plans? Not even worth it. I am however playing guitar this week. Always worth it.
Cured I am not yet but if you can break that cycle and give the brain a chance to stop going crazy, it can only be a good thing. And I count it a victory for sure, even tho nothing's been planted in the garden and I don't feel six days worth of productive in a typical sense. Six days doesn't erase a life long battle with migraine, nor sixteen years of chronic insano migraine brain. But interestingly enough, it came just in time to deal with a few things.
One of those things is early hormone week. Like, really early hormone week. Is that a side-effect of Melatonin? I'll have to do some more research. I don't have all the things memorized on that shnazz yet. Still, I haven't run into the typical hormone migraine, and that's unheard of. Absolutely unheard of except for one other time in the past sixteen years so, bonus. Another fun thing I've been dealing with is Sasha's stomach. A week into doubling her new med, her migraine has gone mostly abdominal. Well, it starts abdominal and then moves into her head for the evening. I'm going to call it progress because at least we're messing with her. And that means Sasha and I have been trying to avoid her rescue meds all day with ice, essential oils, baths, and general distraction. That takes effort, lemme tell you. That goes on top of the constant feeding, of course.
But probably the most eye-rolling thing to deal with this week is the girls' dad's baby-momma. She got it in her head to be upset with me and I'm not really sure why. I think it has mainly to do with the fact that she is followed around by a life time of bad decisions which include the fact that my worst decision (steven) is her best one, and he still owes me money. So out of nowhere she started facebook messaging me. (: It's mostly hilarious, but also mildly distracting from my real life. I emailed her third baby daddy (steven) and asked him to take care of it, and to remind her that I've paid off his credit card twice, and put money into his bank account a few time. *huge eye roll* But who's keeping score? Not her apparently.
So I guess all told, not a bad week? I mean, yes more (forever and ever) asinine school emails about food in the class, and no, we're not all cured from migraine and yes we all still eat like the freaks we are, but it could be and has been worse. Did I forget to mention the birthday food again with the late notice change of plans? Not even worth it. I am however playing guitar this week. Always worth it.
Wednesday, April 15, 2015
Bitter, Angry, Exhausted
Imagine with me there's a miracle cure for migraine, but there are only 5 or 6 places in the U.S. that offer this treatment. Now imagine that one of the places is my ag town. (random, but stay with me.) Now imagine that my insurance actually approves this treatment and they want me to start Monday. Monday, like in less than a week Monday, but I can't because it takes a 5-day stint in the hospital for this treatment to work.
Clinic Lady: "You've been approved for treatment, can you start Monday?"
Me: "...Uh...wow, awesome, but I can't do this until June." *silently weeping*
CL: "Can you tell me why?"
Me: (oh my god) *deep sigh* "I'm a single mom and both my little kids have migraines and food allergies, and they're not even normal food allergies so no one wants to take care of them or can even feed them. My oldest daughter's migraines are under control with meds but my youngest daughter just went to Stanford because hers are not and we're doubling her new meds tonight and hoping nothing crazy happens and my mom who we live with is a teacher and no one gets out of school until June..." *takes breath*
CL: "Oh wow, I'm sorry you have to deal with that. Ok well just let us know because approval only takes a couple of days."
Me: *blank stare*
So this "miracle cure" is a thing where they stick you in the hospital and shoot you up with stuff three times a day for 5 days, and it has a stupid high success rate for at the very least, VASTLY IMPROVING YOUR STUPID MIGRAINE LIFE. So that you don't have a migraine every damn single day. So you can be a functional human being. And what were the chances that a headache doctor would come to town? But one did, and she is literally down the street and around the corner from my effing house.
And I won't be getting treatment on Monday. And I won't be getting treatment as soon as humanly possible in June because family stuff. Good, great, amazing stuff, but oh my god, haven't I been fucking tortured long enough? I'll just be waiting, exhausted and in pain, and I'm having a bit of a hard time with that. I do not know how to have a good attitude about this.
And having that actual conversation yesterday is killing me, because it's planting season, I have dirt and seeds, and a kids who can't eat anything who could really REALLY use some variety in her diet, and not an ounce of energy to make boxes and plant anything or even fertilize or haul grey water to the fruit trees we already have.
Really? Since when was Joss Whedon put in charge of the screenplay?
Clinic Lady: "You've been approved for treatment, can you start Monday?"
Me: "...Uh...wow, awesome, but I can't do this until June." *silently weeping*
CL: "Can you tell me why?"
Me: (oh my god) *deep sigh* "I'm a single mom and both my little kids have migraines and food allergies, and they're not even normal food allergies so no one wants to take care of them or can even feed them. My oldest daughter's migraines are under control with meds but my youngest daughter just went to Stanford because hers are not and we're doubling her new meds tonight and hoping nothing crazy happens and my mom who we live with is a teacher and no one gets out of school until June..." *takes breath*
CL: "Oh wow, I'm sorry you have to deal with that. Ok well just let us know because approval only takes a couple of days."
Me: *blank stare*
So this "miracle cure" is a thing where they stick you in the hospital and shoot you up with stuff three times a day for 5 days, and it has a stupid high success rate for at the very least, VASTLY IMPROVING YOUR STUPID MIGRAINE LIFE. So that you don't have a migraine every damn single day. So you can be a functional human being. And what were the chances that a headache doctor would come to town? But one did, and she is literally down the street and around the corner from my effing house.
And I won't be getting treatment on Monday. And I won't be getting treatment as soon as humanly possible in June because family stuff. Good, great, amazing stuff, but oh my god, haven't I been fucking tortured long enough? I'll just be waiting, exhausted and in pain, and I'm having a bit of a hard time with that. I do not know how to have a good attitude about this.
And having that actual conversation yesterday is killing me, because it's planting season, I have dirt and seeds, and a kids who can't eat anything who could really REALLY use some variety in her diet, and not an ounce of energy to make boxes and plant anything or even fertilize or haul grey water to the fruit trees we already have.
Really? Since when was Joss Whedon put in charge of the screenplay?
Monday, March 30, 2015
Spring Transplant
I get a brain transplant tomorrow, which is my brain's hilarious way of saying nerve-block. It's some kind of combination, residual side-effect of too much daily Topamax, plus recovery from the hellgraine when I didn't take my normal rescue med a couple of days ago. It has been difficult to distinguish between the normal transient aphasia that comes as a precursor to full blown migraine, and "Dopamax Syndrome", where you can't find the word you want or the wrong word comes out. Either way, making good words has been more difficult overall for the past few days. But on the grand upside, I haven't taken any rescue meds going on two days!
Confession: I'm a little worried about tomorrow's physical therapy followed by the nerve-block. I'm not afraid of needles, but since I'm supposed to be weaning down to a LOT LESS rescue meds, I have a lot of questions, which can really be boiled down to the main question, will I ever stop getting migraines, or even will I ever stop getting enough migraines all the time so as to enable me to function at least quasi-normally? These questions can be even further broken down.
-- Will the nerve block work?
-- If the nerve block works to stop the migraine, will they just come back worse as they always do when they seem to stop and I become temporarily functional?
-- Maybe between physical therapy AND the nerve block this time will be different. No really, this time...
-- Am I going to curse heaven and hell more than I already do for ever letting me get my hopes up?
-- At what point does traumatic stress turn into post-traumatic stress disorder, or can you just stay in traumatic stress forever and if you do will your kids still be functional humans?
Honestly, I'm afraid to even start thinking again. I have so many more questions. We don't even have Sasha's new meds to try yet, although that should happen sometime this week. (I adore our pharmacy, so much.) My main feeling is exhaustion, and my main thought is questions and trepidation. That's probably normal when great amounts of change are on the horizon. And we are beyond desperate for change. I'm so tired physically, and so tired of fielding people's questions and having to figure things out, see this is why Disney is still in business. (Rescue and magic, and of course buying out all the great franchises like Star Wars and Muppets) Don't get me wrong, I miss talking to people. I'm just tired of our life.
A brain transplant is starting to sound pretty good actually. I'm glad it's spring break, that's one less thing to deal with. (school) And next week is my mom's spring break, so if it hits the fan with all this nerve blocking and med juggling, at least I won't have truant officers at the house. I'm starting to feel a little bit like Bob in What About Bob, as I chant to myself, "I feel good, I feel great, I feel wonderful..."
Hey, did you know that melatonin is being used as a migraine preventative? Neurologist number 4 now associated with my family is all kinds of cutting edge. I really am [cautiously]hopeful. And also taking melatonin.
Confession: I'm a little worried about tomorrow's physical therapy followed by the nerve-block. I'm not afraid of needles, but since I'm supposed to be weaning down to a LOT LESS rescue meds, I have a lot of questions, which can really be boiled down to the main question, will I ever stop getting migraines, or even will I ever stop getting enough migraines all the time so as to enable me to function at least quasi-normally? These questions can be even further broken down.
-- Will the nerve block work?
-- If the nerve block works to stop the migraine, will they just come back worse as they always do when they seem to stop and I become temporarily functional?
-- Maybe between physical therapy AND the nerve block this time will be different. No really, this time...
-- Am I going to curse heaven and hell more than I already do for ever letting me get my hopes up?
-- At what point does traumatic stress turn into post-traumatic stress disorder, or can you just stay in traumatic stress forever and if you do will your kids still be functional humans?
Honestly, I'm afraid to even start thinking again. I have so many more questions. We don't even have Sasha's new meds to try yet, although that should happen sometime this week. (I adore our pharmacy, so much.) My main feeling is exhaustion, and my main thought is questions and trepidation. That's probably normal when great amounts of change are on the horizon. And we are beyond desperate for change. I'm so tired physically, and so tired of fielding people's questions and having to figure things out, see this is why Disney is still in business. (Rescue and magic, and of course buying out all the great franchises like Star Wars and Muppets) Don't get me wrong, I miss talking to people. I'm just tired of our life.
A brain transplant is starting to sound pretty good actually. I'm glad it's spring break, that's one less thing to deal with. (school) And next week is my mom's spring break, so if it hits the fan with all this nerve blocking and med juggling, at least I won't have truant officers at the house. I'm starting to feel a little bit like Bob in What About Bob, as I chant to myself, "I feel good, I feel great, I feel wonderful..."
Hey, did you know that melatonin is being used as a migraine preventative? Neurologist number 4 now associated with my family is all kinds of cutting edge. I really am [cautiously]hopeful. And also taking melatonin.
Sunday, March 1, 2015
Just another school letter
M.________, Prinipal _________
Every year of Emily’s school life at __________, we have had nuts, peanuts and peanut butter in the classroom. The worst and scariest incident happened when the teacher who had her for two years in a row handed out bags of trail mix (80% nuts) to everyone sitting around her, and then tried to hide it from me. Emily could easily have gone to the hospital or just stopped breathing that day. Emily is contact and airborne sensitive. The more food we have in the classroom, the easier it is to forget. Unless you have an allergic child, there is no possible way for you to understand. All it takes is one parent to slip, and we have a problem. Kinder through second grade, we have had a problem every single year without fail.
At the beginning of this year, I almost cried with joy when M. _______ announced at the welcome night for parents there would be no surprise birthday food or snacks in the classroom. Imagine my confusion and fury when I come home to an email on Friday when SURPRISE BIRTHDAY FOOD had already taken place! I am still trying to process the fact that there will be snacks in the class on Monday, something I only received warning about on Thursday. That is already a short time-frame considering that Emily is my easy allergy kid, and our weekends are spent at farmers markets purchasing and processing food for her younger sister Sasha. Sasha can only eat food from specific vendors are the farmers markets that are uncontaminated with corn products. Her diet is extremely limited and her migraines are out of control at present, which is why she no longer attends kindergarten at _______.
Clearly, the no-food policy in M. _____’ classroom has changed, and I am extremely upset at having that sprung on me with absolutely no warning. I’m thinking if you’re going to lie to a population in a classroom, lie to the ones who can already go to restaurant and eat at the drop of a hat, or to the ones who take vacations ever because they have safe sources of food and water. Maybe don’t lie to the ones who have three different neurologists, who have to plan every move as if it were going overseas, even if it’s just running errands. And if there is a change in food policy, for the love of god, give me warning so that for the 4th year in a row Emily isn’t excluded every damn week. Food is already our enemy, please don’t make it the thoughtlessness of people too.
Charli
Emily's Mom
Friday, February 6, 2015
Hacktastical
My God, how you guys do it? Live and breathe and make it I mean. My bank card was recently hacked. I already got my new card, and reimbursement for half the amount I lost. I don't know why only half. I guess I could blow energy trying for the 40 bucks that I'm supposedly guaranteed, but I really need that time and energy to freeze my credit and stuff because my insurance company was also recently hacked. And what energy and time I have left needs to go to finish collecting/arranging all the papers to get back the few thousand dollars my other insurance has so far refused to reimburse me. It's just..I don't...shit like this makes me want to die.
In better news, Sasha learned how to air up a car tire, and also the rabbit poo is decomposing nicely. I'm otherwise flabbergasted. It definitely feels like I'm starting to live more lately, but with returning more to life always come an almost equal amount of...uh...life to deal with I guess. So with three months of [I can't believe I'm saying this again] literally the longest and most migraines I've ever had all together, predictably comes the worst and most difficult recovery. And all the reading suggests I should be at a rehab facility in Germany doing biofeedback for a month. *shrugs* But what can you do?
I played my violin the other day though, for about five minutes. Well, ten if you include tuning. Never would have guessed that my own kids would be impressed. It should be normal for them, they should be annoyed even! I taught violin until about a week before I gave birth to Emily. Sasha wants me to teach her. [string of VERY offensive expletives and gibberish about energy, migraines, and "the system"]
There must be a practical way to navigate the darkest valley, or rather to start seeing the light again without dropping in pain and exhaustion. Being photo sensitive due to chronic migraine makes it extra tricky, especially when you drop your shades in the toilet. No big, that's what soap is for right? Wash the toilet water off the shades, apply them to your face, and head to the market. I suppose any amount of 'fall back and re-group' still counts as fight as long as you don't leave the shades floating in the toilet. That's a big deal in a house with one bathroom.
So, now to process: food, hacked information, potentially hacked information, information between hacked entity and jacked entity, and don't get any more migraines readygo! But maybe a shower first, just in case any residual toilet water is clogging my pores.
In better news, Sasha learned how to air up a car tire, and also the rabbit poo is decomposing nicely. I'm otherwise flabbergasted. It definitely feels like I'm starting to live more lately, but with returning more to life always come an almost equal amount of...uh...life to deal with I guess. So with three months of [I can't believe I'm saying this again] literally the longest and most migraines I've ever had all together, predictably comes the worst and most difficult recovery. And all the reading suggests I should be at a rehab facility in Germany doing biofeedback for a month. *shrugs* But what can you do?
I played my violin the other day though, for about five minutes. Well, ten if you include tuning. Never would have guessed that my own kids would be impressed. It should be normal for them, they should be annoyed even! I taught violin until about a week before I gave birth to Emily. Sasha wants me to teach her. [string of VERY offensive expletives and gibberish about energy, migraines, and "the system"]
There must be a practical way to navigate the darkest valley, or rather to start seeing the light again without dropping in pain and exhaustion. Being photo sensitive due to chronic migraine makes it extra tricky, especially when you drop your shades in the toilet. No big, that's what soap is for right? Wash the toilet water off the shades, apply them to your face, and head to the market. I suppose any amount of 'fall back and re-group' still counts as fight as long as you don't leave the shades floating in the toilet. That's a big deal in a house with one bathroom.
So, now to process: food, hacked information, potentially hacked information, information between hacked entity and jacked entity, and don't get any more migraines readygo! But maybe a shower first, just in case any residual toilet water is clogging my pores.
Wednesday, January 21, 2015
I'm down with ATP
My brain was different today. I guess there isn't any reviewable evidence to back up that claim, but given my history, it's probably a reasonable conclusion. My brain felt different. No rescue meds since about 11:45 last night (second round for the day) but getting moving this morning reminded me of college. That happens, that wasn't the different part. The different part might be good? Migraine does change over the course of one's life...hm. The problem is that people who have migraine with aura are 4 times more likely to have a stroke last I read. And I'm not sure what today was. When you're never sure if you're coming into or out of a migraine, it's hard to say if it's aura or postdrome aka "migraine hangover". I just always feel like shit. But this shit was different.
I told my mom it was like my brain sat in water and couldn't dry off. I guess it's more like my brain sat in fuzzy and couldn't shake it. I felt drugged and weird all day, even tho I hadn't taken anything besides my regular preventatives since the night before. It reminded me of a couple of years ago when I could hardly move for half a day, my body was so exhausted. Recalling information and details was hard, I was dropping things, blegh. I finally started to feel less crappy toward the evening. I'm really hoping there is no raging migraine waiting to crawl out of my brain at 3am god I HATE THOSE!!!
Today is Wednesday? My dear neighbor passed away on Sunday, and all the neighbors have been having a hard time. She went in her sleep but it was unexpected. I guess sleeping has been hard for a couple of nights. It is a comfort to be part of a neighborhood where we can mourn together. My Dad's funeral was the first one. How many neighborhoods weep together? We are fortunate to go to each other's weddings, anniversaries, and funerals. I do dream of living in a house with a more functional kitchen, maybe not right off a freeway in the backyard, but I just don't know how I'd be able to get all the neighbors to agree to move with us. Guess I'll save that problem for another day.
I've been reading about adenosine triphosphate. Do you have any idea how much shit nobody knows about the human body? It's mind boggling. Not that we don't know about ATP, but in just trying to get a basic understanding of cellular biology and neurochemistry, there's all kinds of guess-work involved. But that makes sense. The more I learn about allergies vs other body sciences, the more it seems like that's really in its infancy. Of course, we know crap tons more than we did a hundred years ago. *shrugs* So anyway, I don't know what I'm hoping to do, but in my constant quest for energy and constant struggle under migraine, I was curious if there was any connection, or what role ATP might play in migraine. Turns out, there are a lot of big words to look up. Good thing I look looking up big words while drooling on the couch.
Of course, I'd like to not be drooling on the couch. I'd prefer to have appropriate amounts of ATP running around, being recycled in my cells and not being recepted improperly anywhere. Because eff that mess. I need this stupid brain for just a little longer.
I told my mom it was like my brain sat in water and couldn't dry off. I guess it's more like my brain sat in fuzzy and couldn't shake it. I felt drugged and weird all day, even tho I hadn't taken anything besides my regular preventatives since the night before. It reminded me of a couple of years ago when I could hardly move for half a day, my body was so exhausted. Recalling information and details was hard, I was dropping things, blegh. I finally started to feel less crappy toward the evening. I'm really hoping there is no raging migraine waiting to crawl out of my brain at 3am god I HATE THOSE!!!
Today is Wednesday? My dear neighbor passed away on Sunday, and all the neighbors have been having a hard time. She went in her sleep but it was unexpected. I guess sleeping has been hard for a couple of nights. It is a comfort to be part of a neighborhood where we can mourn together. My Dad's funeral was the first one. How many neighborhoods weep together? We are fortunate to go to each other's weddings, anniversaries, and funerals. I do dream of living in a house with a more functional kitchen, maybe not right off a freeway in the backyard, but I just don't know how I'd be able to get all the neighbors to agree to move with us. Guess I'll save that problem for another day.
I've been reading about adenosine triphosphate. Do you have any idea how much shit nobody knows about the human body? It's mind boggling. Not that we don't know about ATP, but in just trying to get a basic understanding of cellular biology and neurochemistry, there's all kinds of guess-work involved. But that makes sense. The more I learn about allergies vs other body sciences, the more it seems like that's really in its infancy. Of course, we know crap tons more than we did a hundred years ago. *shrugs* So anyway, I don't know what I'm hoping to do, but in my constant quest for energy and constant struggle under migraine, I was curious if there was any connection, or what role ATP might play in migraine. Turns out, there are a lot of big words to look up. Good thing I look looking up big words while drooling on the couch.
Of course, I'd like to not be drooling on the couch. I'd prefer to have appropriate amounts of ATP running around, being recycled in my cells and not being recepted improperly anywhere. Because eff that mess. I need this stupid brain for just a little longer.
Sunday, January 11, 2015
And everyone said
I'm fine with Emily losing wheat, so long as it's only wheat. [read: I'm sure it's going to be more than wheat. It's already been wheat and hummus!] We've lost wheat before, and I've suspected for some time that it hasn't been doing Em any favors. But when she started getting spots on her face like Sasha gets with corn, Mom finally got on board with cutting it out. Except for that time she slipped her a piece of bread to make sure. She's sure now.
I'm fine with Emily losing wheat because for the love of God, we now have some return to sanity in this house! Sasha's still nutso quite often (because said mom still just HAS to keep trying foods with her too *COUGH*) but we were losing Em just due to behavior problems. Nothing was working to control it either, not a damn thing. Lo and behold, just like we got Sasha back after clearing her of wheat and corn when she was little, we're getting Emily back, only much more quickly.
But I don't like the fact that she's 8, and that we haven't nailed everything yet. Hummus makes her chin itch, and she has an occasional dry spot on her chin as well. Maybe the dry chin will clear up the longer she goes without wheat and hummus, but the whole peanut allergy vs the itchy hummus has me concerned. [read: they are both legumes] There are so many things it could be, and as I've learned now, it's definitely not nothing. I don't like that new food things are bothering Emily, who hasn't had a migraine in over a year, who is rocking school, who is the "easy kid" in that she's only anaphylactic to several foods, none of which are corn omg please don't ever let it be corn expletiveexpletiveexpletive!!! [read: I'm already THAT food-allergy parent at school. They have no idea, NO idea whatsoever...]
I don't like the fact that there are new symptoms on a new kid to track when I've just had the worst round of the most frequent and severe migraines in my life, to finish the worst financial, physical, and emotional year of my life. Not that there isn't hope, I mean, I've gone one day this year without rescue meds so far. And I do have a plan. I'm taking every single goddamn supplement I've ever taken that didn't seem to work but could not possibly unwork as badly as lately. And I've never concentrated my prayer life on emotional healing from being in a farcical, shit marriage, and then the overwhelming stress of being a debilitated single mom to two migraine/extreme food-allergy kids, so I imagine that will help. Healing of any sort will be helpful.
There were five days in December in which I did not take rescue meds. There has been one day this year in which I have not taken any. I assume I'll be able to refill tomorrow, as I am all out at present. Healing of any sort, for any one, will be helpful. I don't feel like I know what Paul meant in Romans, that all things work together for the good of those who love God, who are called according to his purpose. But I feel like I do know what it is to actually, Actually trust God, and be thankful for the opportunity to take him at his word. Maybe we will make it through the shitfest, scathed but unforsaken. Amen.
I'm fine with Emily losing wheat because for the love of God, we now have some return to sanity in this house! Sasha's still nutso quite often (because said mom still just HAS to keep trying foods with her too *COUGH*) but we were losing Em just due to behavior problems. Nothing was working to control it either, not a damn thing. Lo and behold, just like we got Sasha back after clearing her of wheat and corn when she was little, we're getting Emily back, only much more quickly.
But I don't like the fact that she's 8, and that we haven't nailed everything yet. Hummus makes her chin itch, and she has an occasional dry spot on her chin as well. Maybe the dry chin will clear up the longer she goes without wheat and hummus, but the whole peanut allergy vs the itchy hummus has me concerned. [read: they are both legumes] There are so many things it could be, and as I've learned now, it's definitely not nothing. I don't like that new food things are bothering Emily, who hasn't had a migraine in over a year, who is rocking school, who is the "easy kid" in that she's only anaphylactic to several foods, none of which are corn omg please don't ever let it be corn expletiveexpletiveexpletive!!! [read: I'm already THAT food-allergy parent at school. They have no idea, NO idea whatsoever...]
I don't like the fact that there are new symptoms on a new kid to track when I've just had the worst round of the most frequent and severe migraines in my life, to finish the worst financial, physical, and emotional year of my life. Not that there isn't hope, I mean, I've gone one day this year without rescue meds so far. And I do have a plan. I'm taking every single goddamn supplement I've ever taken that didn't seem to work but could not possibly unwork as badly as lately. And I've never concentrated my prayer life on emotional healing from being in a farcical, shit marriage, and then the overwhelming stress of being a debilitated single mom to two migraine/extreme food-allergy kids, so I imagine that will help. Healing of any sort will be helpful.
There were five days in December in which I did not take rescue meds. There has been one day this year in which I have not taken any. I assume I'll be able to refill tomorrow, as I am all out at present. Healing of any sort, for any one, will be helpful. I don't feel like I know what Paul meant in Romans, that all things work together for the good of those who love God, who are called according to his purpose. But I feel like I do know what it is to actually, Actually trust God, and be thankful for the opportunity to take him at his word. Maybe we will make it through the shitfest, scathed but unforsaken. Amen.
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