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.
Sunday, November 29, 2015
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.
Subscribe to:
Posts (Atom)