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.
Friday, February 6, 2015
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.
Saturday, November 22, 2014
dead needles waiting
What in the crap happened? I just have to remember...oh hey THERE'S the dang scarf thing I was looking for! I once knitted this ugly infinity scarf, just to practice knitting on round needles, and to jump back in pool of yarn, so to speak. But I'm kind of opposed to using crap wool that's made from crude oil, so I went with this beautiful teal, 100% wool stuff, and grabbed a pattern off the internets. Then I threw a couple of colors in there because since I didn't know what I was doing, I figured I couldn't screw it up any more. Well, it turned out itchy and ugly and I never even bothered blocking it. But since it's all wool, now I'm going to felt it, cut it up, and see how many mason jar cozies I can get out of it. Looking at it now, it should be a totally great looking felt mason jar cozy. Who knew a year ago?!
That is not the one chore I would have chosen to do a year ago, if I could go back. It would definitely be gardening. Or maybe NOT getting the great infection of Dec '13 from which I have never truly recovered. Being back on Botox has made a huge difference in rescue med days per month as compared to not being on Botox, but I've leveled out and worse, seem to be climbing back up. Since progress is often cumulative, this could just be a setback. My latest round hasn't even kicked in yet so I believe it will get better, which is good to remember. But Sasha's back to a daily migraine, and my helpful relatives who suggest I take her to a new neurologist, I never see hide nor hair of tho' we live in the same town. We are all effed up, and busy as hell.
I understand, this is all single moms. This is all migraineurs. This is all corn-allergics in multiple food-allergy families. This is all food-allergy moms. This is all humans. God, we must be in the same boat, right? Everyone needs council, and help, and medicine. I do understand we are the shittier side of the American end of things, but we're not part of the 1 Billion humans who go to bed hungry every night. Well, Sasha does sometimes, but only bc the abundant food is poisonous. But somewhere in there I'm still fending off a migraine and a panic attack over insidious insurance situations, with medical marijuana. I'd much rather be processing tomatoes before the season ends and I have to figure out what else doesn't kill Sasha. But I mean, yay I found the scarf.
I sometimes wonder if people think we're doing better than we are because we in general do kick ass, and because no one is dead yet. I sometimes think that maybe we're more normal than it seems and maybe just having migraine make it seem worse. Of course, then I try to have a conversation with someone, which generally doesn't go over very smoothly.
Oh wait, there was time change. There was fall back on Nov 2, and then there was Botox which always triggers a migraine and then there was hormone week and then there was early pick-up for a damn week and a half and there were storms on and off and no fucking wonder I've had a migraine this whole goddamn month piece of shit! I feel like 10,000 butterflies just exploded from the angry power of my mind. I hate everything, there is no reason for this or to this, there is no stopping or controlling it. I call bullshit. BULLSHIT!!!
You know, I learned and re-learned some good skills knitting that ugly, itchy infinity scarf. And then I started knitting a gorgeous, rainbow entrelac scarf. And then I got way too sick to finish bc even though entrelac isn't super complicated, it's a teensy bit complicated and after the great infection of Dec '13, I could totally not keep up. So then sometime after I had sufficiently recovered, I started a super easy baby blanket that is literally one stitch over and over. And because of this past year, I'm nowhere close to finishing and can't remember the last time I picked it up. And also insurance owes me thousands of dollars.
I often wonder if Sasha is going to survive childhood, and if I'm going to survive Sasha's childhood. It feels like we both have a terminal illness, and I'm just going through life trying to make us suffer as little as possible until the inevitable. But maybe I'm just completely defeated from a rough (several) year(s). Surely recovery has to start somewhere...
That is not the one chore I would have chosen to do a year ago, if I could go back. It would definitely be gardening. Or maybe NOT getting the great infection of Dec '13 from which I have never truly recovered. Being back on Botox has made a huge difference in rescue med days per month as compared to not being on Botox, but I've leveled out and worse, seem to be climbing back up. Since progress is often cumulative, this could just be a setback. My latest round hasn't even kicked in yet so I believe it will get better, which is good to remember. But Sasha's back to a daily migraine, and my helpful relatives who suggest I take her to a new neurologist, I never see hide nor hair of tho' we live in the same town. We are all effed up, and busy as hell.
I understand, this is all single moms. This is all migraineurs. This is all corn-allergics in multiple food-allergy families. This is all food-allergy moms. This is all humans. God, we must be in the same boat, right? Everyone needs council, and help, and medicine. I do understand we are the shittier side of the American end of things, but we're not part of the 1 Billion humans who go to bed hungry every night. Well, Sasha does sometimes, but only bc the abundant food is poisonous. But somewhere in there I'm still fending off a migraine and a panic attack over insidious insurance situations, with medical marijuana. I'd much rather be processing tomatoes before the season ends and I have to figure out what else doesn't kill Sasha. But I mean, yay I found the scarf.
I sometimes wonder if people think we're doing better than we are because we in general do kick ass, and because no one is dead yet. I sometimes think that maybe we're more normal than it seems and maybe just having migraine make it seem worse. Of course, then I try to have a conversation with someone, which generally doesn't go over very smoothly.
Oh wait, there was time change. There was fall back on Nov 2, and then there was Botox which always triggers a migraine and then there was hormone week and then there was early pick-up for a damn week and a half and there were storms on and off and no fucking wonder I've had a migraine this whole goddamn month piece of shit! I feel like 10,000 butterflies just exploded from the angry power of my mind. I hate everything, there is no reason for this or to this, there is no stopping or controlling it. I call bullshit. BULLSHIT!!!
You know, I learned and re-learned some good skills knitting that ugly, itchy infinity scarf. And then I started knitting a gorgeous, rainbow entrelac scarf. And then I got way too sick to finish bc even though entrelac isn't super complicated, it's a teensy bit complicated and after the great infection of Dec '13, I could totally not keep up. So then sometime after I had sufficiently recovered, I started a super easy baby blanket that is literally one stitch over and over. And because of this past year, I'm nowhere close to finishing and can't remember the last time I picked it up. And also insurance owes me thousands of dollars.
I often wonder if Sasha is going to survive childhood, and if I'm going to survive Sasha's childhood. It feels like we both have a terminal illness, and I'm just going through life trying to make us suffer as little as possible until the inevitable. But maybe I'm just completely defeated from a rough (several) year(s). Surely recovery has to start somewhere...
Tuesday, November 4, 2014
Didn't vote, don't care
I feel better? I felt better. I briefly felt better about feeling worse but now there has been a tornado, a wrecker. Nothing we can't recover from and for the love of God we've been through it so many times you'd think YOU'D THINK I could just keep stepping, right in time.
I can't even have normal conversations with people anymore. How do you ascend or descend or transcend whatever situation you're in and explain that you lost salt, pepper, and oil, and in not feeding those to Sasha you somehow made her have a lovely new breakout/psychofest complete with two days of migraine so far? It's not so bad we lost all the foodstores for winter or anything, but I did lose some stuff and losing ANY stuff pisses me off bad. Some stuff is possibly, probably salvageable but it will need to be salvaged, of course while scrambling and praying that I can:
1. Find the source of the original problem causing a very minor breakout and behaviorfest.
2. Acquire food that does NOT bring back the bigger breakout/psychofest.
3. Make new safe salt once my blocks arrive tomorrow without extending the migraine to day 5.
It's tempting to just say, "holy shit, we're fucked." Is the room a little spinny, in here, to you? I'm missing a funeral this weekend. Kind of a bummer. She was a mentor and a friend, and we used to be very, very close. Also the girls' dad is hounding me for information and I finally got around to telling him tonight that I was a tad busy so maybe he could complete the One Job he had with regard to said information. Is it warm in here, a little bit? I need to do some paperwork to get refunded money from insurance assholes, and they even sent me extra copies in case I mess it up, but considering the amount of meds I'm on and my track record with screwing up paperwork while having to think clearly with 25 shit-tons of life-threatening things to take care of, I'm not sure right now is a good time to do it.
I think we caught a break though. I don't think the beans are what gave Sasha the new bigger breakout-psycho-migrainefest. And they're definitely not what caused the original minor breakout-behaviorfest. Bonus, she'll eat those plain as poop 'till the cows dress for school and THEN come home. FINGERS CROSSED EVERYONE, I WANT EVERYONE'S FINGERS CROSSED RIGHT EFFING NOW!!!
I just, I don't care who wins any elections because no one will touch what's wrong with the food, which is the root of so many of our problems, health and healthcare being one of the biggest. No one cares about the truth. And some year when my family isn't dying, I'll do my research and decide who sucks less. I have absolutely beyond zero research to spare. I have to have a lesser migraine to make salt tomorrow, I must try not to kill Sasha with it, and in my spare time I've really gotta keep Emily alive. I vote schools stop doing food-centric activities OMGalready...#effingholidayseason
I can't even have normal conversations with people anymore. How do you ascend or descend or transcend whatever situation you're in and explain that you lost salt, pepper, and oil, and in not feeding those to Sasha you somehow made her have a lovely new breakout/psychofest complete with two days of migraine so far? It's not so bad we lost all the foodstores for winter or anything, but I did lose some stuff and losing ANY stuff pisses me off bad. Some stuff is possibly, probably salvageable but it will need to be salvaged, of course while scrambling and praying that I can:
1. Find the source of the original problem causing a very minor breakout and behaviorfest.
2. Acquire food that does NOT bring back the bigger breakout/psychofest.
3. Make new safe salt once my blocks arrive tomorrow without extending the migraine to day 5.
It's tempting to just say, "holy shit, we're fucked." Is the room a little spinny, in here, to you? I'm missing a funeral this weekend. Kind of a bummer. She was a mentor and a friend, and we used to be very, very close. Also the girls' dad is hounding me for information and I finally got around to telling him tonight that I was a tad busy so maybe he could complete the One Job he had with regard to said information. Is it warm in here, a little bit? I need to do some paperwork to get refunded money from insurance assholes, and they even sent me extra copies in case I mess it up, but considering the amount of meds I'm on and my track record with screwing up paperwork while having to think clearly with 25 shit-tons of life-threatening things to take care of, I'm not sure right now is a good time to do it.
I think we caught a break though. I don't think the beans are what gave Sasha the new bigger breakout-psycho-migrainefest. And they're definitely not what caused the original minor breakout-behaviorfest. Bonus, she'll eat those plain as poop 'till the cows dress for school and THEN come home. FINGERS CROSSED EVERYONE, I WANT EVERYONE'S FINGERS CROSSED RIGHT EFFING NOW!!!
I just, I don't care who wins any elections because no one will touch what's wrong with the food, which is the root of so many of our problems, health and healthcare being one of the biggest. No one cares about the truth. And some year when my family isn't dying, I'll do my research and decide who sucks less. I have absolutely beyond zero research to spare. I have to have a lesser migraine to make salt tomorrow, I must try not to kill Sasha with it, and in my spare time I've really gotta keep Emily alive. I vote schools stop doing food-centric activities OMGalready...#effingholidayseason
Wednesday, October 22, 2014
If Satan Were A Grape
Yeah. I thought writing would be a good idea because it often helps me process. So does talking to grown-ups, but that only happens in short bursts. Short, completely necessary bursts that make me remember I was once human more so than reinforce it. But there is so much to untangle and decompress, trying to write a blog seems shallow. Not useless but almost more trouble than it's worth. Gah, almost except this is probably better than obsessing over whether or not I should be peeling carrots, or guilt-tripping myself over not getting grapes into the dehydrators RIGHT THIS SECOND.
I miss music so bad. I want to go sing with my once and future *fingers crosses* recording buddies who also occasionally save my sanity. I don't care if we get anything recorded kind of ever actually, I just might die without music is all. Specific music with people who are hard to find, I don't know why it's that way. Damn the grapes creeping into my existence, why is it always grapes?!
The existence is essentially broken into a few categories:
1. Feeding Sasha
2. Staying alive
3. Parenting
4. Everything else
Feeding Sasha is paramount because of course if I don't, she'll die. I have no interest in planning a tiny funeral so, that wins. And it takes a disproportionately gross amount of time and energy. I have no idea how to wedge music in there, I don't think it's possible right now. Damn. But the great is (not news, just great) I'm not planning ways to kill us daily. I do feel like I'm cracking again tho.
Because it's not just grapes, it's the mystery spots that Sash woke up with on the day we were going to trail duck eggs. Kid's only been living without a daily migraine for a few weeks, not even months, and I'm way on edge about every errant spot. Everything is second-guessed, and I'm bummed about losing any perceived "safe" food either by spoilage or reaction. I can't figure the source of the spots so we trial the duck eggs anyway, and she goes to bed with some bumps on her belly which may or may not have been there this morning. It could be so much worse, I know. She could be anaphylactic, we could know that we only have 4 or 5 or 2 safe foods, we could be living at a hospital...*deep breaths*
But omg, this quest for sanity, peace, it seems futile. Music? Impossible, laughable. Why was I writing again? Yes, to remind me to put the **%&$*^( grapes in the dehydrator. Because it's Wednesday, and I get more grapes on Friday and grapes stop coming in soon and we only get what I can process in time. I hope it wasn't the raisins that gave her spots because I will scream. I'm hungry. Maybe if I figure out how to go play music Sasha won't die. We'll see how these eggs work out. In reality I can't imagine going anywhere, ever. Not with an increasingly sensitive corn allergic, whose big sister is the easy allergy kid, being only anaphylactic to all nuts plus a few bonus fruits.
As always, I feel like this would be so much more manageable if I could just get past migraine. Migraine isn't helpful for thinking straight and neither are all the damn meds. Although the numbers would suggest I'm getting better, so maybe that's why I quit contemplating murder/suicide? I'm still marching down the scale in rescue med days per month, although August and September were flipped. May was 19, June 18, July 17, August 15, September 16, and so far I have 10 in October. I'm accomplishing more, less suicidal, and feeling tortured as ever Oh Shit I remember! See, this is why I write, for revelations sake. As I feel better, I remember what it's like to be human, and things start to bother me more, like the never-ending crap-clutter around me. I'm must really be starting to feel better, because now I'm seeing the reality, which of course is better and also sucks immensely.
Ok so that's better. It's overall good! I knew the numbers couldn't be wrong. I'm starting to surface from beneath the darkest, heaviest rot of constant migraine, and realizing the magnitude of our situation. Whereas before it was head down and just go and hope something works, now that things are working I'm trying to make up for lost time and lack of direction. Which is probably not best idea. Balance, presence... *deeeeeeeeeeeeeeeep breath*...f**k off, grapes. Lord, but it's weird life we lead. I'm so glad we had this conversation. Thanks for hanging with everyone, both of you.
Oh gosh, so what now? Hm. I'm really glad that I actually am feeling better, even though it doesn't feel like it. Except now that I figured out I really am, I'll just remind myself instead of wanting to break everything. So glad this all TOTALLY makes sense. (; Holy crap, the tomatoes are still in the dehydrator, I hope they're not powder...
I miss music so bad. I want to go sing with my once and future *fingers crosses* recording buddies who also occasionally save my sanity. I don't care if we get anything recorded kind of ever actually, I just might die without music is all. Specific music with people who are hard to find, I don't know why it's that way. Damn the grapes creeping into my existence, why is it always grapes?!
The existence is essentially broken into a few categories:
1. Feeding Sasha
2. Staying alive
3. Parenting
4. Everything else
Feeding Sasha is paramount because of course if I don't, she'll die. I have no interest in planning a tiny funeral so, that wins. And it takes a disproportionately gross amount of time and energy. I have no idea how to wedge music in there, I don't think it's possible right now. Damn. But the great is (not news, just great) I'm not planning ways to kill us daily. I do feel like I'm cracking again tho.
Because it's not just grapes, it's the mystery spots that Sash woke up with on the day we were going to trail duck eggs. Kid's only been living without a daily migraine for a few weeks, not even months, and I'm way on edge about every errant spot. Everything is second-guessed, and I'm bummed about losing any perceived "safe" food either by spoilage or reaction. I can't figure the source of the spots so we trial the duck eggs anyway, and she goes to bed with some bumps on her belly which may or may not have been there this morning. It could be so much worse, I know. She could be anaphylactic, we could know that we only have 4 or 5 or 2 safe foods, we could be living at a hospital...*deep breaths*
But omg, this quest for sanity, peace, it seems futile. Music? Impossible, laughable. Why was I writing again? Yes, to remind me to put the **%&$*^( grapes in the dehydrator. Because it's Wednesday, and I get more grapes on Friday and grapes stop coming in soon and we only get what I can process in time. I hope it wasn't the raisins that gave her spots because I will scream. I'm hungry. Maybe if I figure out how to go play music Sasha won't die. We'll see how these eggs work out. In reality I can't imagine going anywhere, ever. Not with an increasingly sensitive corn allergic, whose big sister is the easy allergy kid, being only anaphylactic to all nuts plus a few bonus fruits.
As always, I feel like this would be so much more manageable if I could just get past migraine. Migraine isn't helpful for thinking straight and neither are all the damn meds. Although the numbers would suggest I'm getting better, so maybe that's why I quit contemplating murder/suicide? I'm still marching down the scale in rescue med days per month, although August and September were flipped. May was 19, June 18, July 17, August 15, September 16, and so far I have 10 in October. I'm accomplishing more, less suicidal, and feeling tortured as ever Oh Shit I remember! See, this is why I write, for revelations sake. As I feel better, I remember what it's like to be human, and things start to bother me more, like the never-ending crap-clutter around me. I'm must really be starting to feel better, because now I'm seeing the reality, which of course is better and also sucks immensely.
Ok so that's better. It's overall good! I knew the numbers couldn't be wrong. I'm starting to surface from beneath the darkest, heaviest rot of constant migraine, and realizing the magnitude of our situation. Whereas before it was head down and just go and hope something works, now that things are working I'm trying to make up for lost time and lack of direction. Which is probably not best idea. Balance, presence... *deeeeeeeeeeeeeeeep breath*...f**k off, grapes. Lord, but it's weird life we lead. I'm so glad we had this conversation. Thanks for hanging with everyone, both of you.
Oh gosh, so what now? Hm. I'm really glad that I actually am feeling better, even though it doesn't feel like it. Except now that I figured out I really am, I'll just remind myself instead of wanting to break everything. So glad this all TOTALLY makes sense. (; Holy crap, the tomatoes are still in the dehydrator, I hope they're not powder...
Monday, September 22, 2014
Thin Is In
Reasonably certain my guitar callouses are gone, as I haven't picked up any guitar in about 10 or so months. I'm losing my thick-skinned-ness in general as well. (note to self: don't eat grapes in a half lit room. The moldy ones sneak up on you. *spit spit spit*) I would think the constant rub of people's reactions would make for better callouses, but I've worn thin instead of thick. Not that it's thin without triumph.
Sasha: "I'm happy because I've been feeling good for all these days."
Wrap it up, can it, call it a day. I've been fighting for that for months. It's why people react to questions I ask them and explanations I give them, why I fight my Mom and her attitude and her memory every day, why I force myself to eat every day, and why my mom-guilt over Emily's shitty behavior has taken a back seat. It seems like we have finally reached a baseline, where Sasha is not having a migraine every day, and where I can single out the food that is causing her to react should we care to trial anything. And it's just about killing me, but not quite. And in that space where hope nags and mocks instead of helps is where we are surviving.
My mom is finally taking all of this seriously, since I started describing to her in detail the ways I could kill one or more of us, as I contemplate it daily. Daily. She said I needed therapy, but I'm pretty sure she needs more, so I'll get some when she does. Anyway we have no time. 2-3 days a week we are hauling ass to Farmer's Markets and harassing farmers who are either a) annoyed that I'm suggesting their organic crops aren't safe for someone by even asking about pest control and using the word "allergies" b) utterly confused when I ask what they use for pest-control because all their sprays are thoroughly certified organic duh c) really glad I asked what they use for pest control and wish more people would or d) utterly confused why I would even ask because of COURSE they would never spray ANYTHING! <3. And then there is the apiarist (bee dude) who I just called out for lying. I asked what he fed his bees. *confused look* "Nothing" as he proceeds to tell me about the process which somehow included sugar water. I stopped him and said, "So you lied. You Do feed your bees." But then he was totally cool and he had a few figs too and it sounded like they were just growing up on some mountain near his bees so I bought almost all the last few bags of figs he had. I hope I was right to trust that he didn't spray anything on them when he said he didn't. He looked at me like I had 6 heads when I made sure he didn't spray anything on them. *sigh* And that is why I am thin of skin, flesh, and pants size. Actually the pants size is due to the Topamax and the low-nickel diet. Damn it all to hell.
Where were we? Oh right, so the market days wipe me out, which are the weekends and the weekdays are school days and also processing of procured food days. The dehydrator never stops running, the freezer need re-organizing, and I need to start canning. (I seem to be pretty good at fermenting except for sourdough starter, which I have officially given up on as Sasha can't seem to do any grains anyway.) And for as excellent as it is to be back on migraine-botox, migraine is still kicking my ass. I will have more than 15 rescue med days this month. I am accomplishing TONS, but I feel like shit 24/7. Our 23andme test kits are here, maybe I'll be able to suss out some useful info. And maybe when Sash is stable for a month or two or six and if we survive the winter and she gets back in school and we get our garden going...maybe I'll have the brains to find and deal with a useful medical practitioner? I'm so goddamn tired. But my six year old isn't living on coffee and tylenol anymore. She's living on food that isn't making her sick. Booyah, I win.
Sasha: "I'm happy because I've been feeling good for all these days."
Wrap it up, can it, call it a day. I've been fighting for that for months. It's why people react to questions I ask them and explanations I give them, why I fight my Mom and her attitude and her memory every day, why I force myself to eat every day, and why my mom-guilt over Emily's shitty behavior has taken a back seat. It seems like we have finally reached a baseline, where Sasha is not having a migraine every day, and where I can single out the food that is causing her to react should we care to trial anything. And it's just about killing me, but not quite. And in that space where hope nags and mocks instead of helps is where we are surviving.
My mom is finally taking all of this seriously, since I started describing to her in detail the ways I could kill one or more of us, as I contemplate it daily. Daily. She said I needed therapy, but I'm pretty sure she needs more, so I'll get some when she does. Anyway we have no time. 2-3 days a week we are hauling ass to Farmer's Markets and harassing farmers who are either a) annoyed that I'm suggesting their organic crops aren't safe for someone by even asking about pest control and using the word "allergies" b) utterly confused when I ask what they use for pest-control because all their sprays are thoroughly certified organic duh c) really glad I asked what they use for pest control and wish more people would or d) utterly confused why I would even ask because of COURSE they would never spray ANYTHING! <3. And then there is the apiarist (bee dude) who I just called out for lying. I asked what he fed his bees. *confused look* "Nothing" as he proceeds to tell me about the process which somehow included sugar water. I stopped him and said, "So you lied. You Do feed your bees." But then he was totally cool and he had a few figs too and it sounded like they were just growing up on some mountain near his bees so I bought almost all the last few bags of figs he had. I hope I was right to trust that he didn't spray anything on them when he said he didn't. He looked at me like I had 6 heads when I made sure he didn't spray anything on them. *sigh* And that is why I am thin of skin, flesh, and pants size. Actually the pants size is due to the Topamax and the low-nickel diet. Damn it all to hell.
Where were we? Oh right, so the market days wipe me out, which are the weekends and the weekdays are school days and also processing of procured food days. The dehydrator never stops running, the freezer need re-organizing, and I need to start canning. (I seem to be pretty good at fermenting except for sourdough starter, which I have officially given up on as Sasha can't seem to do any grains anyway.) And for as excellent as it is to be back on migraine-botox, migraine is still kicking my ass. I will have more than 15 rescue med days this month. I am accomplishing TONS, but I feel like shit 24/7. Our 23andme test kits are here, maybe I'll be able to suss out some useful info. And maybe when Sash is stable for a month or two or six and if we survive the winter and she gets back in school and we get our garden going...maybe I'll have the brains to find and deal with a useful medical practitioner? I'm so goddamn tired. But my six year old isn't living on coffee and tylenol anymore. She's living on food that isn't making her sick. Booyah, I win.
Subscribe to:
Posts (Atom)