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...
Saturday, November 22, 2014
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.
Saturday, August 23, 2014
Maiswasserfoltermusik
My Mom bought 7 dead chickens today. The guy at the farmer's market threw in a bunch of fairytale eggplants for free along with a couple of lumpy, spiny cucumbers. Our last two chicken carcasses went into the stock pot tonight with some safe veggies and safe seasoning, so now we've got soup. We are just getting the hang of corn phase 2: extreme elimination. The oil should be actual olive oil and not cut with cheap vegetable oil (corn) and the salt is Himalayan pink rock salt ie. no additives or anti-caking agent such as dextrose (also corn) and the rest of the spices came from Penzeys which are notorious for not using corn products in their manufacturing procedures whereas most other companies such as McCormick's either use corn products or are hit and miss and therefore absolutely not worth it. Corn phase 2 is not for the faint of heart or mind.
I freaked out on my Mom later this afternoon because I thought she had given Sasha some bottled water. In case you have never read the ingredients in your bottled water, you should try that. Many brands have straight-up labeled corn derivatives in them, which is at least convenient. (Kirkland, Dasani) Luckily mom hadn't given Sash any yet. So just to recap, there is probably genetically modified, pesticidal corn in your water. Why is cancer projected to be the number one killer in the U.S. by 2016 again? But I digress. What I wanted to celebrate was the fact that we left the house on an errand of fun, and we totally had fun! A friend's birthday party was attempted and because I woke up with my head burning and promptly took meds and went back to bed, I didn't have to bother with nap time later! So it actually worked out. (: Nice when that happens. Ah, but corn...corn and learning.
So let me back up. Adventures with our useless allergist are quickly drawing to a close, but I'm glad we jumped through that hoop. If nothing else it's helping me figure out where on the corn allergy spectrum Sasha is, thanks to the "really rare!" reaction she had to whatever's in the scratch test solution that she's apparently not allergic to. *rolls eyes* IgE, IgG, what the eff ever. I'm glad she's not anaphylactic, I really am. But I swear to you, it would be so much easier if she were, because people understand what the hell that means. Then I could tell people definitely, "No corn chips at the party or Sasha will die" instead of discovering that she's scraping her own back off because of cross-contamination in the bouncy house. (lightweight long sleeves next time) If she ever makes it back to school, I don't know what I'm going to do. I've pulled her from Kindergarten and am reluctantly homeschooling her for now btw since she still has a migraine every day. She loves school, and I have zilch energy to do a good job, as all my energy goes into food prep. I'm not even taking care of my own nickelbrain very well lately. But pulling her out every day because her head hurts and she's crying and god forbid having to deal with food at this point doesn't exactly work either. *vomits slightly*
But back to good news! The hope of help. Since a small army from near and far donated time and labor for us to have a free chest freezer, my Uncle put some shelves up to store the mason jars! And some more friends are going to do a community garden with me in my backyard! Double bonus, some of my awesome friends are even going to help process the gobs of safe produce that comes in on Thursday, as my Mom has a late day at work and I am already overwhelmed, just as general daily protocol. For as isolating as this all actually is, it's good to still have community. Let me rephrase that. It's necessary to have community, or we'd be dead by now.
I'm still waiting for every day to not feel like torture. Friends and family speak of strength, and I don't deny feeling strong (yet simultaneously haggard), but I could really dig not feeling tortured every day. I would love love LOVE to have a really nice number of rescue med days this month or next, like 8. As if, I know, right? Total pipe dream. If I have 16 or fewer this month that will be progress and I will be grateful. (I already have 12 for August) But oh my God, when every single day doesn't feel like torture with or without meds, shoot, I'll pick up a guitar again and sing. Right now I'm glad that Sasha is back to being a reasonable human being, even with a migraine. I'm glad that we left the house on an errand of pleasure and not on an errand of find-food-or-starve. I'm glad that the meds worked today, and that I didn't even come CLOSE to running out this month. And I'm glad that when Indie got out of the backyard while we were gone, the neighborhood boys brought her back, and called me to let me know. <3
Random funny, Emily is singing herself to sleep. I used to sing everyone awake, well before I could speak clearly as a baby. Em will sing Sasha to sleep when she's not feeling well. Sasha sings more during the day, and Em does too, but Em is the lullaby artist. *sigh* I guess I'll keep them.
I freaked out on my Mom later this afternoon because I thought she had given Sasha some bottled water. In case you have never read the ingredients in your bottled water, you should try that. Many brands have straight-up labeled corn derivatives in them, which is at least convenient. (Kirkland, Dasani) Luckily mom hadn't given Sash any yet. So just to recap, there is probably genetically modified, pesticidal corn in your water. Why is cancer projected to be the number one killer in the U.S. by 2016 again? But I digress. What I wanted to celebrate was the fact that we left the house on an errand of fun, and we totally had fun! A friend's birthday party was attempted and because I woke up with my head burning and promptly took meds and went back to bed, I didn't have to bother with nap time later! So it actually worked out. (: Nice when that happens. Ah, but corn...corn and learning.
So let me back up. Adventures with our useless allergist are quickly drawing to a close, but I'm glad we jumped through that hoop. If nothing else it's helping me figure out where on the corn allergy spectrum Sasha is, thanks to the "really rare!" reaction she had to whatever's in the scratch test solution that she's apparently not allergic to. *rolls eyes* IgE, IgG, what the eff ever. I'm glad she's not anaphylactic, I really am. But I swear to you, it would be so much easier if she were, because people understand what the hell that means. Then I could tell people definitely, "No corn chips at the party or Sasha will die" instead of discovering that she's scraping her own back off because of cross-contamination in the bouncy house. (lightweight long sleeves next time) If she ever makes it back to school, I don't know what I'm going to do. I've pulled her from Kindergarten and am reluctantly homeschooling her for now btw since she still has a migraine every day. She loves school, and I have zilch energy to do a good job, as all my energy goes into food prep. I'm not even taking care of my own nickelbrain very well lately. But pulling her out every day because her head hurts and she's crying and god forbid having to deal with food at this point doesn't exactly work either. *vomits slightly*
But back to good news! The hope of help. Since a small army from near and far donated time and labor for us to have a free chest freezer, my Uncle put some shelves up to store the mason jars! And some more friends are going to do a community garden with me in my backyard! Double bonus, some of my awesome friends are even going to help process the gobs of safe produce that comes in on Thursday, as my Mom has a late day at work and I am already overwhelmed, just as general daily protocol. For as isolating as this all actually is, it's good to still have community. Let me rephrase that. It's necessary to have community, or we'd be dead by now.
I'm still waiting for every day to not feel like torture. Friends and family speak of strength, and I don't deny feeling strong (yet simultaneously haggard), but I could really dig not feeling tortured every day. I would love love LOVE to have a really nice number of rescue med days this month or next, like 8. As if, I know, right? Total pipe dream. If I have 16 or fewer this month that will be progress and I will be grateful. (I already have 12 for August) But oh my God, when every single day doesn't feel like torture with or without meds, shoot, I'll pick up a guitar again and sing. Right now I'm glad that Sasha is back to being a reasonable human being, even with a migraine. I'm glad that we left the house on an errand of pleasure and not on an errand of find-food-or-starve. I'm glad that the meds worked today, and that I didn't even come CLOSE to running out this month. And I'm glad that when Indie got out of the backyard while we were gone, the neighborhood boys brought her back, and called me to let me know. <3
Random funny, Emily is singing herself to sleep. I used to sing everyone awake, well before I could speak clearly as a baby. Em will sing Sasha to sleep when she's not feeling well. Sasha sings more during the day, and Em does too, but Em is the lullaby artist. *sigh* I guess I'll keep them.
Tuesday, July 15, 2014
Help.
I need a work day, because this is bullshit.
Sasha had a mild skin reaction today, to either the juice or the cup from Starbucks. They both have corn in them, and I've been preaching this to my Mom. But we have "gotten away" with the corn that's in the organic juice from Starbucks, and with the corn that's in the corn-based wax in the processed-with-corn-paper cup, until today. I have been preaching that Sasha is getting more sensitive to corn as evidence by her unreasonable bitchiness when she doesn't have a migraine, and/or by the fact that she's pretty much had a migraine every day for a few of months now. When I don't keep her slathered in essential oils every minute of every day, she still scratches scabs into her back, every, single, day. I'm not sure what other evidence I need to mount a full scale attack on corn, a THIRD round of Sasha's hair falling out?!? SHE HAS A MIGRAINE EVERY DAY, SHE IS FIVE YEARS OLD, AND SHE GOT HIVES FROM A PAPER CUP WITH ORGANIC JUICE IN IT. FOR THE LOVE OF GOD, WE NEED TO TAKE DRASTIC MEASURE YESTERDAY!!! Because the sauerkraut sitting on my counter won't be done for at least another week and a half, and it was made with organic cabbage. [read: probably still has corn in it.]
I am at a loss, defeated. I need help. I need people with energy and muscles to come help move the crap from the patio into the office (or the goodwill, or the dump), and move a freezer from my friend's apartment, down some stairs, and into my patio. That will at least give me a place to put safe food once I have found it.
I need this to happen as soon as possible. As per normal moving protocol, I will totally buy you pizza, but as pizza is covered in cornmeal on the bottom, you have to eat it outside, or clean up after yourselves completely as I will no doubt, be too tired to do so. Sadly, I am not joking.
Thanks in advance. Also I love you.
Sasha had a mild skin reaction today, to either the juice or the cup from Starbucks. They both have corn in them, and I've been preaching this to my Mom. But we have "gotten away" with the corn that's in the organic juice from Starbucks, and with the corn that's in the corn-based wax in the processed-with-corn-paper cup, until today. I have been preaching that Sasha is getting more sensitive to corn as evidence by her unreasonable bitchiness when she doesn't have a migraine, and/or by the fact that she's pretty much had a migraine every day for a few of months now. When I don't keep her slathered in essential oils every minute of every day, she still scratches scabs into her back, every, single, day. I'm not sure what other evidence I need to mount a full scale attack on corn, a THIRD round of Sasha's hair falling out?!? SHE HAS A MIGRAINE EVERY DAY, SHE IS FIVE YEARS OLD, AND SHE GOT HIVES FROM A PAPER CUP WITH ORGANIC JUICE IN IT. FOR THE LOVE OF GOD, WE NEED TO TAKE DRASTIC MEASURE YESTERDAY!!! Because the sauerkraut sitting on my counter won't be done for at least another week and a half, and it was made with organic cabbage. [read: probably still has corn in it.]
I am at a loss, defeated. I need help. I need people with energy and muscles to come help move the crap from the patio into the office (or the goodwill, or the dump), and move a freezer from my friend's apartment, down some stairs, and into my patio. That will at least give me a place to put safe food once I have found it.
I need this to happen as soon as possible. As per normal moving protocol, I will totally buy you pizza, but as pizza is covered in cornmeal on the bottom, you have to eat it outside, or clean up after yourselves completely as I will no doubt, be too tired to do so. Sadly, I am not joking.
Thanks in advance. Also I love you.
Saturday, July 12, 2014
Nickelbrain
There isn't much research into exactly how much nickel should be in a human brain. But I do like numbers, so let's start there anyway. 12 days into July, I've only taken migraine rescue meds for 6 of those, one off and one on except for yesterday and the day before which was two in a row. I shall expect to go two in a row sans meds to make up for it, except that I'm sauerkrauting tomorrow, shoot.... Anyway, I found out there was officially such a thing as a "low nickel diet" on July 3 and I've gotta tell you, I've been pooping awesome for at least the past 4-5 days! This is a bit surprising to me since I've upped my milk intake considerably (from none to lots) and downed my leafy greens (from lots to none). But as I have known more than most people ever want to hear about, you can't argue with food allergies.
Technically nickel allergy isn't a food allergy 'though, it's a complicated immune response, T-cells, yadda yadda, something or other. And I'm still figuring out all the "safe" foods for me. I don't think the pizza was probably a good idea, but after dealing with two days of migraine, and Mom going bonkers weeding things out on the patio, I was exhausted and hungry, and there was no rotisserie chicken in the house. Of course now that I'm thinking clearly, I probably could have paid someone to just pick me up a rotisserie chicken and saved 20 bucks and some itching, but that's the nature of the disease. *texting mom that we need to buy a rotisserie chicken* And here's the exciting part: I actually feel better.
Cruciferous veggies are on the lower end of things that absorb nickel, although there is quite a bit of variance according to what list you read. So even with half my days being rescue med days, they are still more functional days than lately, when I've felt mainly useless. Is there such a things as controlled psychotic urgency? We have to make enough progress on the house to get a freezer in here. I have to get better in order to source safe meat, fruits, and veggies. I have to have energy to process said produce. (by safe I mean corn-free) ((by safe I also mean low-nickel)) (((by safe I also also mean not processed near nuts))) Obviously the girls can stuff themselves with nickel except that I don't want them to develop an allergy and never eat chocolate again OMG.
Ok but back to Nickelbrain and why I have chronic daily migraine, ya. I just have this theory, this fantasy, this pipe dream that maybe reducing how much nickel I eat will contribute to less frequent and severe migraine. It has already led to better...water closet visitations. And less itching when I don't eat pizza, banana, (which is low nickel but can aggravate an allergy WHY?!?) or those wonderful grass fed beef jerky sticks. (probably bc of the celery juice?) I have a lot of trialing to do and a LOT of food to make. Mom has already made me pumpkin cookies and pancakes without full-of-nickel baking soda or powder. Sauerkraut seems easy and is really yummy the way my aunt makes it. [read:bonus happy guts]
Oh, but why should less Nickelbrain equal fewer migraine days? Well, I went on this raw food kick for about 3 weeks a few years ago. I was eating maybe 70% raw, lots of veggies and fruits, tons of stuff from list I now avoid. I actually felt really good, and had a lot of energy. It was the best I had felt since high school! But when the hormonal migraine hit, it didn't go away for a month, and that was the last time I went near that eating plan. I talked to my neurologist about it and asked her if in feeling well and being active I had maybe worked some unknown substances into my brain, so that when the migraine Did come, my body way overreacted? She looked at me calmly and said, "Of course." And then when I asked if I should strap myself to a chair when I felt good she said, "Life is a marathon..." She was not joking! Perhaps I came closer to the truth than I knew, and those "substances" I was shoving into my brain was just nickel. Too dang much Ni28.
You know I never did try chocolate covered bacon. But I don't even care, not even a little bit. The thought of chocolate makes me itchy and slightly nauseated. I think I will go have bacon with a side of fewer migraines please. Oooooh, and Star Trek for dessert...
Technically nickel allergy isn't a food allergy 'though, it's a complicated immune response, T-cells, yadda yadda, something or other. And I'm still figuring out all the "safe" foods for me. I don't think the pizza was probably a good idea, but after dealing with two days of migraine, and Mom going bonkers weeding things out on the patio, I was exhausted and hungry, and there was no rotisserie chicken in the house. Of course now that I'm thinking clearly, I probably could have paid someone to just pick me up a rotisserie chicken and saved 20 bucks and some itching, but that's the nature of the disease. *texting mom that we need to buy a rotisserie chicken* And here's the exciting part: I actually feel better.
Cruciferous veggies are on the lower end of things that absorb nickel, although there is quite a bit of variance according to what list you read. So even with half my days being rescue med days, they are still more functional days than lately, when I've felt mainly useless. Is there such a things as controlled psychotic urgency? We have to make enough progress on the house to get a freezer in here. I have to get better in order to source safe meat, fruits, and veggies. I have to have energy to process said produce. (by safe I mean corn-free) ((by safe I also mean low-nickel)) (((by safe I also also mean not processed near nuts))) Obviously the girls can stuff themselves with nickel except that I don't want them to develop an allergy and never eat chocolate again OMG.
Ok but back to Nickelbrain and why I have chronic daily migraine, ya. I just have this theory, this fantasy, this pipe dream that maybe reducing how much nickel I eat will contribute to less frequent and severe migraine. It has already led to better...water closet visitations. And less itching when I don't eat pizza, banana, (which is low nickel but can aggravate an allergy WHY?!?) or those wonderful grass fed beef jerky sticks. (probably bc of the celery juice?) I have a lot of trialing to do and a LOT of food to make. Mom has already made me pumpkin cookies and pancakes without full-of-nickel baking soda or powder. Sauerkraut seems easy and is really yummy the way my aunt makes it. [read:bonus happy guts]
Oh, but why should less Nickelbrain equal fewer migraine days? Well, I went on this raw food kick for about 3 weeks a few years ago. I was eating maybe 70% raw, lots of veggies and fruits, tons of stuff from list I now avoid. I actually felt really good, and had a lot of energy. It was the best I had felt since high school! But when the hormonal migraine hit, it didn't go away for a month, and that was the last time I went near that eating plan. I talked to my neurologist about it and asked her if in feeling well and being active I had maybe worked some unknown substances into my brain, so that when the migraine Did come, my body way overreacted? She looked at me calmly and said, "Of course." And then when I asked if I should strap myself to a chair when I felt good she said, "Life is a marathon..." She was not joking! Perhaps I came closer to the truth than I knew, and those "substances" I was shoving into my brain was just nickel. Too dang much Ni28.
You know I never did try chocolate covered bacon. But I don't even care, not even a little bit. The thought of chocolate makes me itchy and slightly nauseated. I think I will go have bacon with a side of fewer migraines please. Oooooh, and Star Trek for dessert...
Saturday, July 5, 2014
Small parts Satan
Do you know how much is awesome about this?!
1. It's extremely validating
2. We have ANWERS!!!
3. Most importantly and helpful, we have a plan. A plan! A PLAN!!!
Interestingly, we now have 4 sets of migraine, and 3 sets of opposing food allergies in-house. 3 of us are rocking migraine today, although mine is just the normal amount, and I am not on rescue meds so far, Hallelujah. But I feel so validated in finding out that chocolate indeed, has about the highest nickel content that a food can have on this green earth, hence why I can't eat it anymore without itching. Milk has a low nickel content, which is why it doesn't bother me, and why for the love of God, I am never cutting out of my diet again. *deep sigh of relief* I feel so incredibly validated because for the times I've cut it out and it has had no effect on migraine whatsoever except maybe an increase, now I effing know why. Which brings me to answers.
Nickel (Ni) has an atomic number 28 and is in all food everywhere, because you, me, the earth, and everything upon it is made of stuff containing in small part, nickel. Interestingly, Nickel comes from a German word for Satan. I am not making this up. And certain foods regardless of where or when they are grown, just suck up more nickel than others. This is not typically a problem is you're not allergic to nickel. This is not typically a problem is you ARE allergic to nickel. Enter #casaespinoza. You know, my Dad was allergic to nickel, and he loved chocolate, especially dark chocolate, which of course is the worst of the worst food you could possibly eat if you are trying to avoid nickel in your life. But he got all his amalgam fillings replaced, and was able to wear certain jewelry again after 20 years. Oh and still eat chocolate. I am so allergic to nickel that it seriously contributed to my C-sections. (anyone remember those huge, oozy welts and the full body rash I got when trying to have Emily, due to the nickel snaps in the hospital gown that somehow everyone missed despite my bright red bracelet proclaiming NICKEL ALLERGY? *shudder*) Ya, it turns out that pregnancy makes you more prone to absorbing the ever-present nickel in our effing earth. Which brings me to a plan.
Ok which almost brings me to a plan. I'm still scarred from the horrid reaction I had the snap in the robe. Oh man...I didn't even want pictures taken, because I didn't want to ever remember. Oh God...
So once you've developed a nickel allergy, you have it forever. [read: happiness gone] But there are several things you can do TO GET RID OF THE F***ING PERSISTENT ITCHING. I'm still researching the hell out of this as per protocol, but it looks initially like adopting a low-nickel diet for starters will help, because I was not eating weirdly enough, apparently. Also I guess taking vitamin C with every meal will help you NOT absorb the remaining nickel in the food. And there are some promising studies regarding zinc sulfate and nickel sulfate as far as decreasing sensitivity, and even some regarding getting what nickel there is already present in your body, out of your body.
Not that I ever expect to eat Chocolate, Grains (except rice), Leafy Greens, Canned Food, Dried Fruit, or Beans ever again. But having a reasonably severe nickel allergy Can I guess be related to fatigue and headache. Can I get a WTF are you kidding me, why has no medical professional ever told me any of this?! I already haven't worn jewelry in years, I have to wear gloves to do any sewing, I use bamboo knitting needles, and I have to buy the expensive coated guitar strings! Also, I had a big amalgam filling replaced to try to get the shit out of my existence when I couldn't use silverware anymore and it did help but seriously, I guess it was just the tip of the iceberg. And of course, I have the corn-allergy FB group to thank. (: Someone on there was talking about something else entirely and mentioned they they couldn't eat legumes due to their nickel allergy. Thus these revelations began...
You know, grad school is hard. [read:I graduated, but am clearly still learning things out the wazoo, and regularly teaching medical professionals] But if I can get better, if my family can get better, and if I can help anyone else suffering needlessly under modern medicine's lackluster regime, I will feel less depressed and suicidal. In fact I already feel better drinking my organic, full-fat milk, banana, blueberry smoothie.
Next up, talking to two neurologists on Monday, and making sauerkraunevermind, cabbage is a leafy green. But Sasha could use it for her gut health. So yes to making sauerkraut. Damn. We can...all eat...grass-fed beef...and safe fruit. The less satan the better. The less satan the better. You know, nuts have a lot of satan in them. Sometimes I wish I could feed nuts to Sasha. But the less satan the better...
http://periodic.lanl.gov/28.shtml <-----some stuff about satan's copper aka: nickel
1. It's extremely validating
2. We have ANWERS!!!
3. Most importantly and helpful, we have a plan. A plan! A PLAN!!!
Interestingly, we now have 4 sets of migraine, and 3 sets of opposing food allergies in-house. 3 of us are rocking migraine today, although mine is just the normal amount, and I am not on rescue meds so far, Hallelujah. But I feel so validated in finding out that chocolate indeed, has about the highest nickel content that a food can have on this green earth, hence why I can't eat it anymore without itching. Milk has a low nickel content, which is why it doesn't bother me, and why for the love of God, I am never cutting out of my diet again. *deep sigh of relief* I feel so incredibly validated because for the times I've cut it out and it has had no effect on migraine whatsoever except maybe an increase, now I effing know why. Which brings me to answers.
Nickel (Ni) has an atomic number 28 and is in all food everywhere, because you, me, the earth, and everything upon it is made of stuff containing in small part, nickel. Interestingly, Nickel comes from a German word for Satan. I am not making this up. And certain foods regardless of where or when they are grown, just suck up more nickel than others. This is not typically a problem is you're not allergic to nickel. This is not typically a problem is you ARE allergic to nickel. Enter #casaespinoza. You know, my Dad was allergic to nickel, and he loved chocolate, especially dark chocolate, which of course is the worst of the worst food you could possibly eat if you are trying to avoid nickel in your life. But he got all his amalgam fillings replaced, and was able to wear certain jewelry again after 20 years. Oh and still eat chocolate. I am so allergic to nickel that it seriously contributed to my C-sections. (anyone remember those huge, oozy welts and the full body rash I got when trying to have Emily, due to the nickel snaps in the hospital gown that somehow everyone missed despite my bright red bracelet proclaiming NICKEL ALLERGY? *shudder*) Ya, it turns out that pregnancy makes you more prone to absorbing the ever-present nickel in our effing earth. Which brings me to a plan.
Ok which almost brings me to a plan. I'm still scarred from the horrid reaction I had the snap in the robe. Oh man...I didn't even want pictures taken, because I didn't want to ever remember. Oh God...
So once you've developed a nickel allergy, you have it forever. [read: happiness gone] But there are several things you can do TO GET RID OF THE F***ING PERSISTENT ITCHING. I'm still researching the hell out of this as per protocol, but it looks initially like adopting a low-nickel diet for starters will help, because I was not eating weirdly enough, apparently. Also I guess taking vitamin C with every meal will help you NOT absorb the remaining nickel in the food. And there are some promising studies regarding zinc sulfate and nickel sulfate as far as decreasing sensitivity, and even some regarding getting what nickel there is already present in your body, out of your body.
Not that I ever expect to eat Chocolate, Grains (except rice), Leafy Greens, Canned Food, Dried Fruit, or Beans ever again. But having a reasonably severe nickel allergy Can I guess be related to fatigue and headache. Can I get a WTF are you kidding me, why has no medical professional ever told me any of this?! I already haven't worn jewelry in years, I have to wear gloves to do any sewing, I use bamboo knitting needles, and I have to buy the expensive coated guitar strings! Also, I had a big amalgam filling replaced to try to get the shit out of my existence when I couldn't use silverware anymore and it did help but seriously, I guess it was just the tip of the iceberg. And of course, I have the corn-allergy FB group to thank. (: Someone on there was talking about something else entirely and mentioned they they couldn't eat legumes due to their nickel allergy. Thus these revelations began...
You know, grad school is hard. [read:I graduated, but am clearly still learning things out the wazoo, and regularly teaching medical professionals] But if I can get better, if my family can get better, and if I can help anyone else suffering needlessly under modern medicine's lackluster regime, I will feel less depressed and suicidal. In fact I already feel better drinking my organic, full-fat milk, banana, blueberry smoothie.
Next up, talking to two neurologists on Monday, and making sauerkraunevermind, cabbage is a leafy green. But Sasha could use it for her gut health. So yes to making sauerkraut. Damn. We can...all eat...grass-fed beef...and safe fruit. The less satan the better. The less satan the better. You know, nuts have a lot of satan in them. Sometimes I wish I could feed nuts to Sasha. But the less satan the better...
http://periodic.lanl.gov/28.shtml <-----some stuff about satan's copper aka: nickel
Thursday, July 3, 2014
This Is Why I Swear, Mom...
Because there is no "appropriate", calm way to say that I want to blow my fucking head off. You know, the lucky ones, the ones with means and at the very least somewhat supportive families and internet access, we join corn-allergy facebook groups. And let me tell you, those places are better than churches my friends, more loving and forgiving than the body of Christ. There is no judgement, only support no matter how crazy the question or how many times it has been asked. Of course, it's not a church anyone would join on purpose, and we're all desperate, frustrated as hell, completely overwhelmed and usually battling multiple food allergies if not more. (raises hand) But otherwise complete strangers will totally send you a food sample to trial so you don't have to buy a whole case of something from who knows what other country. And instead of one person doing every goddamn bit of research, we can share all the disappointing emails from all the companies to confirm that yes is Does contain corn, or no, they have no idea what they are talking about. *sigh* Ah, the camaraderie.
Needless to say, I'm not the only one who swears on the corn-allergy fb group. Neither am I the only Christian. People often offer to pray for one another. Geeze, we go through life online together! A lady announced that she was on her way to the hospital to have a baby, which was a HUGE deal since dextrose and glucose are corn derivatives and they drip those straight into your veins! (Saline only please) Hospital/ER protocol is a mess and don't even bother having a bracelet which says "Corn Allergy" because no one knows what that means except to take the corn off the plate of hospital food. You have to say other things to make them believe you such as "Multiple Allergies To Additives" just for starters. Thankfully the lady was well prepared and made it out just fine. Whew!
One lady was flipping out the other day because she almost couldn't get enough strawberries for the year from a safe place. As in, a lot of people are so sensitive to corn derivatives in pesticides, that if they don't source, hand-pick, and then store enough of their own safe produce while it's in season, they will literally go hungry in the winter. And fyi, most places aren't safe, even organic places bc organic places still often use grain-based vinegars as organic pesticides. (holyshitholyshitholyshit) Sasha's not that sensitive. Well, lemme re-phrase. Sasha went 6 whole days without getting a migraine on her new preventative med, and then she got a migraine. And when she didn't have a migraine, she was just an awful human being, very similar to how she was before I figured out she was "sensitive" to corn. (coughing) So...
Oh, and I went one whole day in July without getting a migraine. Well, I might not have to take meds today, but the night is young, so who knows? If I could just talk to my mom without her shutting down, that might be helpful, but she's a massive introvert. A beautiful, perfect, wonderful, way-more-than-helpful massive introvert. And we have a patio full of...stuff, and no room for a freezer, which we desperately need for grass-fed only beef (not washed in corn, not butchered on equipment washed in corn), and this elusive safe produce that I haven't even had mental, emotional, and sure as fucking hell no physical energy to even source yet.
So to re-cap:
-Sasha is either bat-shit crazy or migrainey and sometimes both, although it looks like we are on the right track. We may just need to up her meds. That process may just take another month. O.M.G....
-I still get about 18 migraine days a month so far, that's on my first round of Botox. Second round should see improvement. So like, assuming Sasha REALLY gets better and the start of school doesn't finish me, [AHAHAHAHAHAHA!!! AHAHAHAHAHAHAHAHAHAHAHAAAAAAAAA*gasp* New class Em, new pricipal, Sasha vs. Kindergarden OMGSUUUUUUCK] I might be rocking by maybe mid-September? F***. ****. ****.
-(i will not have a panic attack thinking about school. i will not have a panic attack thinking about school. i hate our superintendent. i hate corn. i hate the government subsidization of frankenwheat and corn. i hate the two party system and all politics in general. *gasp* **gasp** ***gasp***)
-I, really...
This Is Why I Swear, Mom.
Needless to say, I'm not the only one who swears on the corn-allergy fb group. Neither am I the only Christian. People often offer to pray for one another. Geeze, we go through life online together! A lady announced that she was on her way to the hospital to have a baby, which was a HUGE deal since dextrose and glucose are corn derivatives and they drip those straight into your veins! (Saline only please) Hospital/ER protocol is a mess and don't even bother having a bracelet which says "Corn Allergy" because no one knows what that means except to take the corn off the plate of hospital food. You have to say other things to make them believe you such as "Multiple Allergies To Additives" just for starters. Thankfully the lady was well prepared and made it out just fine. Whew!
One lady was flipping out the other day because she almost couldn't get enough strawberries for the year from a safe place. As in, a lot of people are so sensitive to corn derivatives in pesticides, that if they don't source, hand-pick, and then store enough of their own safe produce while it's in season, they will literally go hungry in the winter. And fyi, most places aren't safe, even organic places bc organic places still often use grain-based vinegars as organic pesticides. (holyshitholyshitholyshit) Sasha's not that sensitive. Well, lemme re-phrase. Sasha went 6 whole days without getting a migraine on her new preventative med, and then she got a migraine. And when she didn't have a migraine, she was just an awful human being, very similar to how she was before I figured out she was "sensitive" to corn. (coughing) So...
Oh, and I went one whole day in July without getting a migraine. Well, I might not have to take meds today, but the night is young, so who knows? If I could just talk to my mom without her shutting down, that might be helpful, but she's a massive introvert. A beautiful, perfect, wonderful, way-more-than-helpful massive introvert. And we have a patio full of...stuff, and no room for a freezer, which we desperately need for grass-fed only beef (not washed in corn, not butchered on equipment washed in corn), and this elusive safe produce that I haven't even had mental, emotional, and sure as fucking hell no physical energy to even source yet.
So to re-cap:
-Sasha is either bat-shit crazy or migrainey and sometimes both, although it looks like we are on the right track. We may just need to up her meds. That process may just take another month. O.M.G....
-I still get about 18 migraine days a month so far, that's on my first round of Botox. Second round should see improvement. So like, assuming Sasha REALLY gets better and the start of school doesn't finish me, [AHAHAHAHAHAHA!!! AHAHAHAHAHAHAHAHAHAHAHAAAAAAAAA*gasp* New class Em, new pricipal, Sasha vs. Kindergarden OMGSUUUUUUCK] I might be rocking by maybe mid-September? F***. ****. ****.
-(i will not have a panic attack thinking about school. i will not have a panic attack thinking about school. i hate our superintendent. i hate corn. i hate the government subsidization of frankenwheat and corn. i hate the two party system and all politics in general. *gasp* **gasp** ***gasp***)
-I, really...
This Is Why I Swear, Mom.
Sunday, June 29, 2014
3 to 2 Sasha
I'm just angry. And suicidal. Not probably REALLY suicidal, but probably still mildly depressed, although not nearly so bad as a couple of months ago. Huzzah!? As my mother observes in her prayers, at least we're not bedside in a pediatric cancer ward. So...
Most excellently, Sasha hasn't had a migraine in going on 3 days. This is good news. This is Good news. This is very good news although the little turd has regained excellent turd form, and is being a total *****. (sorry baby) I love her. I totally went two days in a row sans rescue meds until Sasha went two days in a row sans migraine. It's a great problem to have because there's a solution, there are steps to take more or less. I can handle Sasha from a parenting standpoint, and I can manage migraine, although that is always tricky.
Heh, "I can manage migraine" right now means chasing my evening pot chocolate with Benadryl, since Chocolate makes me itch. It's the best way I can get long-acting, high-cbd mmj into my system which allows me to not awaken at say, 2-3AM with a screaming, burning, squeezing, or pounding migraine. But at least there is a plan. And I expect that Sasher's brains are just re-congealing, after being straight up applesauce for a while. Both of those feeling suck major butt. It's infuriating, to feel the fog clearing, but to not be clear of it just yet; To know that something major has just been wrong, not understand it at all, and not quite be free from it. We have so many major hurdles to go but it "should" be so simple: She quits getting migraines, eats a good diet, and will be all better in a few days. Oh if only.
Oh to be normal, and live in a lovely American construct, where the head of the FDA ISN'T the former CEO of Monsanto, a chemical company that makes all the food and worse, the food decisions. The mockery, the insult of it all! And 'though the Sasha crazies aren't as bad as if she had been full-blown Corned, there is still a suspect leftover breakout by her mouth from an elusive SOMETHING. Also, she reacted to some plant outside today that will hopefully only be a brief skin reaction. But the problem is the multi-facetedness of it all, and the fact that I can't be tabbed to think amazingly brilliantly for long periods of time. Damn it all. This is why it would be just so much easier to drive off a cliff. [insert MacGruber explosion]
I CAN be tabbed to shave my head. I love my short hair but it grows too damn fast. And I have to put my brain tiara on all the time, which make my short hair look funny, which pisses off my vanity. (And long hair it just too heavy and too much hassle right now.) So maybe to mortify my vanity I should keep my shaggy, funny looking hair. But if I shave it, it will just grow out quickly and then I can just shave it again. Something to look forward to until I don't have to wear the brain tiara all the time just to function. Then I can grow my hair out. Maybe then I can [insert whatever "normal" activity I should be doing, here. Like plucking my eyebrows.] I totally plucked my eyebrows and had long hair before December. Whatevs yo, change and let go. Aw man, now I'll need a Vote for Pedro shirt, and I'll just tell people I was too hot. Or maybe that I'm too sexy for my hair...
Ugh, but it will suck to clean up. Oooh! Pay the kids. Perfect. Ok stop itching nowreadygo. Ready goNOW.
Most excellently, Sasha hasn't had a migraine in going on 3 days. This is good news. This is Good news. This is very good news although the little turd has regained excellent turd form, and is being a total *****. (sorry baby) I love her. I totally went two days in a row sans rescue meds until Sasha went two days in a row sans migraine. It's a great problem to have because there's a solution, there are steps to take more or less. I can handle Sasha from a parenting standpoint, and I can manage migraine, although that is always tricky.
Heh, "I can manage migraine" right now means chasing my evening pot chocolate with Benadryl, since Chocolate makes me itch. It's the best way I can get long-acting, high-cbd mmj into my system which allows me to not awaken at say, 2-3AM with a screaming, burning, squeezing, or pounding migraine. But at least there is a plan. And I expect that Sasher's brains are just re-congealing, after being straight up applesauce for a while. Both of those feeling suck major butt. It's infuriating, to feel the fog clearing, but to not be clear of it just yet; To know that something major has just been wrong, not understand it at all, and not quite be free from it. We have so many major hurdles to go but it "should" be so simple: She quits getting migraines, eats a good diet, and will be all better in a few days. Oh if only.
Oh to be normal, and live in a lovely American construct, where the head of the FDA ISN'T the former CEO of Monsanto, a chemical company that makes all the food and worse, the food decisions. The mockery, the insult of it all! And 'though the Sasha crazies aren't as bad as if she had been full-blown Corned, there is still a suspect leftover breakout by her mouth from an elusive SOMETHING. Also, she reacted to some plant outside today that will hopefully only be a brief skin reaction. But the problem is the multi-facetedness of it all, and the fact that I can't be tabbed to think amazingly brilliantly for long periods of time. Damn it all. This is why it would be just so much easier to drive off a cliff. [insert MacGruber explosion]
I CAN be tabbed to shave my head. I love my short hair but it grows too damn fast. And I have to put my brain tiara on all the time, which make my short hair look funny, which pisses off my vanity. (And long hair it just too heavy and too much hassle right now.) So maybe to mortify my vanity I should keep my shaggy, funny looking hair. But if I shave it, it will just grow out quickly and then I can just shave it again. Something to look forward to until I don't have to wear the brain tiara all the time just to function. Then I can grow my hair out. Maybe then I can [insert whatever "normal" activity I should be doing, here. Like plucking my eyebrows.] I totally plucked my eyebrows and had long hair before December. Whatevs yo, change and let go. Aw man, now I'll need a Vote for Pedro shirt, and I'll just tell people I was too hot. Or maybe that I'm too sexy for my hair...
Ugh, but it will suck to clean up. Oooh! Pay the kids. Perfect. Ok stop itching nowreadygo. Ready goNOW.
Monday, June 16, 2014
Chemo
Having talked to my dad when he was going through Chemotherapy and Radiation, it's about all I can compare this to. When you're too tired to chew food, constant nausea, hair and weight loss, the inability to write in complete sentences... Well, my dad's hair loss was natural. (; And while Chemo and Radiation tend to not be permanent one way or another, here I am at an impasse. It could be worse. I'm sure this is a sensitive subject for many, and I would only compare chronic daily migraine to chemo and radiation on the authority of being at my father's side as he ascended into glorious splendor. I got to be his nurse for a few weeks, administering meds through his pic line, and then chasing my brother and sister about the house with the leftover saline, having water fights. Hahaha, we managed to have quite a bit of fun during that time, and we manage to have quite a bit of fun now, despite the fact that I literally took a nap that went from immediately after I got up this morning, until about 3 this afternoon, with only a couple of water/food breaks.
People have been asking lately what happened, since I have not always been in such a state. True dat. There was a time in recent memory when I was more or less functional at only 8-9 rescue med days per month. I went to the store, played on the worship team, hosted bible study, even attended school functions! We still didn't do playdates or birthday parties, but come on, with food allergies and chronic migraine, we were still by no means normal. And for all the managing of everyone's everything, it seems like an absolutely unattainable goal to get back there, where we kicked so much @$$. Psht, I even occasionally got paid for my degree and led worship at a church on the side, can you imagine!?! But two things happened, my migraine days shot up almost immediately, and only this past week has there MAYBE been any sign of improvement.
First, my insurance changed carriers and in the ensuing fight, I was off Botox for migraine for an entire calendar year. May '13 to May '14. Second, I got the great infection of December '13. Before December I was averaging about 13 rescue med days a month since the Botox wore off in August. Since December that number went up to 18.5. None of this has made me want to cry until now. Whew. That's a shitty number. That's chronic daily migraine. All of a sudden, sleeping most of the day and STILL accomplishing some child rearing and laundry and vacuuming seems pretty kickass. And now I'm even more upset that I let the girl's stupid Aunt on their dad's side walk in here, be extremely unhelpful, and cause me to have two days of rescue meds and one day of dysfunction after I had managed to go 5 days in a row sans rescue meds. DEEP FREAKING BREATHS Grace and boundaries. graceandboundariesgraceandboundariesgraceandboundariesandneveragain. And never a-freaking-gain.
I understand that it's hard to understand. Most people (thank GOD) will never have chronic daily migraine. And most people will never understand if I tell them that it's like having chemo and radiation for 15 years. It's just hard to balance, speaking the truth in love, while protecting myself and my family. Ignorance is rampant, and most people truly mean well. Well anyway, things are looking up. Going 5 days in a row sans rescue meds combined with the fact that mom is on summer break means that I will probably not run out of rescue meds this month! And with the great lesson I just learned about boundaries, I really do feel better equipped for the rest of the summer. It also probably means we can kiss the family reunion goodbye, which is a huge relief as we have yet to have one where someone doesn't accidentally bring nuts anyway. I am going to get better dammit!
Oh, and so is Sasha. She's got a neurologist appointment tomorrow, which is great because she's been nothing but a mess. I think she might have benign paroxysmal vertigo, but don't quote me on that. Unless I turn out to be right. It would explain why she's so flippy, why she has always fallen down so much, her eye movements etc. I think it may have been hiding beneath the allergies and the migraine history. Sneaky bastard, I would too. Or she could just be a little weirdo with migraines and allergies. Mainly, I need her to get better. No, seriously.
Sometimes I wonder how in hell we have made it this far? Or how in the hell we are going to make it any farther? Knowing lots of wonderful people helps. Wonderful people with great senses of humor is fantastic. I think the best thing right now is being able to rest in the fact that I can make mistakes, and the best of the best will still love me, or at least chalk it up to my meds. (; I hope someday to be able to endure other people's mistakes again. Maybe someday the stakes won't be so high.
From the center, ( http://kottke.org/13/08/the-kvetching-order )
charli
People have been asking lately what happened, since I have not always been in such a state. True dat. There was a time in recent memory when I was more or less functional at only 8-9 rescue med days per month. I went to the store, played on the worship team, hosted bible study, even attended school functions! We still didn't do playdates or birthday parties, but come on, with food allergies and chronic migraine, we were still by no means normal. And for all the managing of everyone's everything, it seems like an absolutely unattainable goal to get back there, where we kicked so much @$$. Psht, I even occasionally got paid for my degree and led worship at a church on the side, can you imagine!?! But two things happened, my migraine days shot up almost immediately, and only this past week has there MAYBE been any sign of improvement.
First, my insurance changed carriers and in the ensuing fight, I was off Botox for migraine for an entire calendar year. May '13 to May '14. Second, I got the great infection of December '13. Before December I was averaging about 13 rescue med days a month since the Botox wore off in August. Since December that number went up to 18.5. None of this has made me want to cry until now. Whew. That's a shitty number. That's chronic daily migraine. All of a sudden, sleeping most of the day and STILL accomplishing some child rearing and laundry and vacuuming seems pretty kickass. And now I'm even more upset that I let the girl's stupid Aunt on their dad's side walk in here, be extremely unhelpful, and cause me to have two days of rescue meds and one day of dysfunction after I had managed to go 5 days in a row sans rescue meds. DEEP FREAKING BREATHS Grace and boundaries. graceandboundariesgraceandboundariesgraceandboundariesandneveragain. And never a-freaking-gain.
I understand that it's hard to understand. Most people (thank GOD) will never have chronic daily migraine. And most people will never understand if I tell them that it's like having chemo and radiation for 15 years. It's just hard to balance, speaking the truth in love, while protecting myself and my family. Ignorance is rampant, and most people truly mean well. Well anyway, things are looking up. Going 5 days in a row sans rescue meds combined with the fact that mom is on summer break means that I will probably not run out of rescue meds this month! And with the great lesson I just learned about boundaries, I really do feel better equipped for the rest of the summer. It also probably means we can kiss the family reunion goodbye, which is a huge relief as we have yet to have one where someone doesn't accidentally bring nuts anyway. I am going to get better dammit!
Oh, and so is Sasha. She's got a neurologist appointment tomorrow, which is great because she's been nothing but a mess. I think she might have benign paroxysmal vertigo, but don't quote me on that. Unless I turn out to be right. It would explain why she's so flippy, why she has always fallen down so much, her eye movements etc. I think it may have been hiding beneath the allergies and the migraine history. Sneaky bastard, I would too. Or she could just be a little weirdo with migraines and allergies. Mainly, I need her to get better. No, seriously.
Sometimes I wonder how in hell we have made it this far? Or how in the hell we are going to make it any farther? Knowing lots of wonderful people helps. Wonderful people with great senses of humor is fantastic. I think the best thing right now is being able to rest in the fact that I can make mistakes, and the best of the best will still love me, or at least chalk it up to my meds. (; I hope someday to be able to endure other people's mistakes again. Maybe someday the stakes won't be so high.
From the center, ( http://kottke.org/13/08/the-kvetching-order )
charli
Saturday, June 7, 2014
Unstuff my June
June. It's June? Anyway its one month and one day since botox, which means it kicks in NOWREADYGO. And my brain is so stuffed with which essential oil to use for what and where corn is hiding and whether or not the migraine gene could be in our mitochondrial dna...sometimes I really wish I could get my tattoos. I'm always excited for new learning, but I also need to remember that I Lack Nothing, and that I will always need to Change And Let Go. Regardless of the connection between allergies and migraines, or the fact that I am the only one at ground zero in my kids' faces all day, I still need to unstuff my brain so I can sleep at night. [read:quit blogging at 2AM]
Have mercy, but I am getting genuinely more concerned over the ignorance of America, and the evil which seeks to prevail over this world! It's nothing new, and I am possibly just becoming more well read as I have little else to do lately, but holy hell. I wouldn't even know where to begin. Conversely, dropping 100mg of Topamax feels really good. Except for the migraine that won't go away. I thought the better of dropping 200mg after some serious rounds of rescue meds. So, just a little constant nausea, but I've been eating. I'll take what I can get.
Speaking of meds, I'm counting on botox et al to get me off so much of the rescue meds. I will be up a major creek otherwise, the rate I've been going. No, seriously. I have to start cutting consumption in half starting today, or I will run out and that has never actually happened before. So...I really need to learn to quit worrying about stuff. Which is really REALLY hard to do.
And you know, I had worrying nailed for some time, for quite some time. Hah! Thanks to migraines and college. Migraines and blood sugar and college. Which was essentially managing suffering, food, and research. Well, research, problem solving, and rehearsal to be entirely accurate. I honestly thought I was either going to not finish, or finish poorly due to migraine. But there was a lot of letting go by necessity, and finish well I did. And for years it hasn't been this hard to not worry.
Time to remember. It is way ok to unhinge. I can do all the crap I need to do during the day, and just unhinge and let it rest at night. And if the world happens to end while I am resting, hufreakingzzah. Why was this so hard to recall 3 hours ago? Stupid verbal processor. (In my head, this blog is to be read aloud.)
I still think my tattoos would be very cool.
Have mercy, but I am getting genuinely more concerned over the ignorance of America, and the evil which seeks to prevail over this world! It's nothing new, and I am possibly just becoming more well read as I have little else to do lately, but holy hell. I wouldn't even know where to begin. Conversely, dropping 100mg of Topamax feels really good. Except for the migraine that won't go away. I thought the better of dropping 200mg after some serious rounds of rescue meds. So, just a little constant nausea, but I've been eating. I'll take what I can get.
Speaking of meds, I'm counting on botox et al to get me off so much of the rescue meds. I will be up a major creek otherwise, the rate I've been going. No, seriously. I have to start cutting consumption in half starting today, or I will run out and that has never actually happened before. So...I really need to learn to quit worrying about stuff. Which is really REALLY hard to do.
And you know, I had worrying nailed for some time, for quite some time. Hah! Thanks to migraines and college. Migraines and blood sugar and college. Which was essentially managing suffering, food, and research. Well, research, problem solving, and rehearsal to be entirely accurate. I honestly thought I was either going to not finish, or finish poorly due to migraine. But there was a lot of letting go by necessity, and finish well I did. And for years it hasn't been this hard to not worry.
Time to remember. It is way ok to unhinge. I can do all the crap I need to do during the day, and just unhinge and let it rest at night. And if the world happens to end while I am resting, hufreakingzzah. Why was this so hard to recall 3 hours ago? Stupid verbal processor. (In my head, this blog is to be read aloud.)
I still think my tattoos would be very cool.
Saturday, May 31, 2014
Triupmh
Omg, May, May, go away!
Come again some other year...
But really, there have been some serious triumphs today. And by today I mean yesterday. (pre-2AM)
1. I killed a cold sore in a few hours with essential oils. HOURS. I could write a whole blog just about that. Message me. It involves doTerra Melaleuca oil.
2. Sasha said it was a good day. This despite going on a week of migraine, and a double earache. Yes I AM hitting the essential oils a lot harder. Please see #1.
3. I ate a whole burrito bowl of Chipotle for dinner. Granted there were no beans, they forgot the quac, and Mom agreed that they skimped us all on the portions, but this is HUGE for me lately, and possibly ever. See #4.
4. If you read Irrelevant Tea, you may or may not have understood that Topamax can make you lose weight. [raises hand] Beloved Neurologist wasn't going to let me lower my dosage at my last meeting. I mean appointment. It's so funny, when you re-word a proposal and threaten to do something stupid, with no fanfare, how much more keen a simple thing like 100mg a day becomes. But, we did have a shitload of stuff to cover, (we always have so much to talk about) the kids were there, I was getting injected with Botulinum type A, and we're still catching up from my year-long sabbatical. Lol, "sabbatical". So I didn't make a very good case at the time. Either way, problem solved! And as I had already started, it feels like I am already getting my brain and my stomach back, just a little. I mean, I'm still nauseated MOST of the time, just not ALL of the time. Actually, maybe I can downgrade it to just Much of the time...2 more days and I'm dropping another 100mg. Eff. That. Mess. Because, if it were preventing any migraine whatsoever, that would be one thing...
Play that triumphant music!!! And the "huzzah" grows weaker as my head slowly tilts to the side. I forgot a triumph, perhaps because it has a mirror twin called "nevermind". I took no rescue meds today, but as it is now 2:22AM, I strongly suspect I will take some tomorrow. This would put May at 19 migraine days, tying December for 2nd place as Most Migraines Ever since I started keeping track about 4 years ago. Oooooh, but what if I don't...and...what if Sasha feels better tomorrow? What if for a day, life wasn't a horrendous battle? *giggle* I kid. (; We'll take it either way. But it's fun to make up stories once in a while.
Anyway more good news. I'm hungry.
Come again some other year...
But really, there have been some serious triumphs today. And by today I mean yesterday. (pre-2AM)
1. I killed a cold sore in a few hours with essential oils. HOURS. I could write a whole blog just about that. Message me. It involves doTerra Melaleuca oil.
2. Sasha said it was a good day. This despite going on a week of migraine, and a double earache. Yes I AM hitting the essential oils a lot harder. Please see #1.
3. I ate a whole burrito bowl of Chipotle for dinner. Granted there were no beans, they forgot the quac, and Mom agreed that they skimped us all on the portions, but this is HUGE for me lately, and possibly ever. See #4.
4. If you read Irrelevant Tea, you may or may not have understood that Topamax can make you lose weight. [raises hand] Beloved Neurologist wasn't going to let me lower my dosage at my last meeting. I mean appointment. It's so funny, when you re-word a proposal and threaten to do something stupid, with no fanfare, how much more keen a simple thing like 100mg a day becomes. But, we did have a shitload of stuff to cover, (we always have so much to talk about) the kids were there, I was getting injected with Botulinum type A, and we're still catching up from my year-long sabbatical. Lol, "sabbatical". So I didn't make a very good case at the time. Either way, problem solved! And as I had already started, it feels like I am already getting my brain and my stomach back, just a little. I mean, I'm still nauseated MOST of the time, just not ALL of the time. Actually, maybe I can downgrade it to just Much of the time...2 more days and I'm dropping another 100mg. Eff. That. Mess. Because, if it were preventing any migraine whatsoever, that would be one thing...
Play that triumphant music!!! And the "huzzah" grows weaker as my head slowly tilts to the side. I forgot a triumph, perhaps because it has a mirror twin called "nevermind". I took no rescue meds today, but as it is now 2:22AM, I strongly suspect I will take some tomorrow. This would put May at 19 migraine days, tying December for 2nd place as Most Migraines Ever since I started keeping track about 4 years ago. Oooooh, but what if I don't...and...what if Sasha feels better tomorrow? What if for a day, life wasn't a horrendous battle? *giggle* I kid. (; We'll take it either way. But it's fun to make up stories once in a while.
Anyway more good news. I'm hungry.
Wednesday, May 21, 2014
Irrelevant Tea
I dream of drinking tea again
I do know it will happen when
I have the energy to make
The trip from lip to cup and take
A sip, repeatedly in fact
Until the last drop's un-intact
And rested happily inside
my belly with its friends (and died).
I wonder if I'll be able to compose silly poems at the drop of a hat when I'm on less Topamax, or when I ever get off of it completely. I know that was one of the side effects, that and inventing words. That poem took maybe 60 seconds to compose. I asked at my last appointment if we could lower the dosage but Beloved Neurologist wanted to wait until my next round of Botulism. I'm not sure I'm going to make it.
I seriously just spent like, 20-30 minutes reading Honest Toddler stuff on fb. It's hilarious, especially if you've ever had prolonged contact with a "spirited" toddler. When I'm not researching my face off, I sometimes read funny things. Man, I can literally feel sentences becoming harder to from. Hehe..."form", not "from". Making good sentences verbally is also a side effect, and I declare that writing and typing also are difficulte and what I menat to say what that speaking clearly and coherently becomes more difficult. *typos left in for emphasis* **I did not add extra typos on puprose**
Um, what I meant was probably something along the lines of:
Blog Post
Not much is new
I like watching Giants Baseball
It's not the end of June yet so I'm still on schedule to feel better by the end of June.
Need to gain weight, Topamax not helping
I'll probably survive maxed out on Topamax, so long as I stop being in a constant state of migraine and make food and eat it. Mmmmmmake food and eat it...
Monday, April 21, 2014
Numb3rs Don't Lie
I've tried to write several times in the past few weeks. It has essentially been too painful in every way. But no longer. >:-) I'm done apologizing for being sick all the time. Most of this sick-guilt comes from me, but some of it comes from others, usually unintentionally. Chronic illness is a total bitch. Total. And I've come to understand that it's not most people's reality. That is fortunate.
I'm definitely depressed, but starting to come out of it. Finally, FINALLY seeing my old neurologist again was a real boost. That was such a boost for many reasons, not the least because I am getting botox either this week or next lord willing! I am getting help. Medical professionals are being helpful! :,-D It feels like an absolute miracle. And this week is my mom's spring break, so it's like a staycation, where I can just worry about not feeling like crap. (glorious!) That is important, considering I have already had 15 rescue med days this month, (11 in a row so far. Jesus, 12 since I started freaking writing uuuugh!!!!!) and shark week is coming up fast. The numbers this month are going to approach record levels, so again, I'm done apologizing for missing things like birthday parties, playdates, and visits about the country. I'm done apologizing for inconveniencing people's schedules especially when they mistake us for a normal family because they do not understand the implications of Food Allergies and Chronic Debilitating Migraines under one roof! I can't feel badly about it anymore because that is not helpful to me or my family. Feeling good about things is helpful and I know, I KNOW I've done a good job doing everything I can to manage and get better. It just FEELS like there is no escape and it will never get any better.
We are here, and here isn't as bad as it could be. It's definitely sad, or, it definitely was. I feel a little bit like Elsa only without any discernible power, and instead of freezing everything and running away, I'm just letting everything go and staying put. So, not really like Elsa at all. I said FEELING ok?! Basically I just don't care anymore. Actually I never cared much, and now I don't care at all. So anyway, the girls are being way more helpful more or less! As in, once Mom and I confiscated every single stuffed animal, threw out most of their toys, and took all their money, they really started helping out around the house! Dishes, laundry, cleaning their room and the house in general, you name it. I am very much Not joking. Sasha feels much better in their easy-to-clean room, and they even get excited about picking up the animal poop. Ah, perspective and priorities are wonderful things!
Aw shoot, is that what Jesus did to me? He took away all the things I liked so I would start being helpful and doing what he told me?!?!! Thats crap man. Was I really as disobedient and awful and mean and lazy as my kids? The flood story makes so much sense now. :-/
So anyway, I finally saw my once and future and now current Neurologist whom I love dearly. Her office lady (who has already received flowers) is working her magic to wrangle both insurances so that I can have botulism injected into my face as soon and as cheaply as possible. I haven't run out of meds nor feared running out in a while since I'm really figuring out how to use rescue meds in conjuntion with mmj and my new brain tiara. My Cefaly unit (brain tiara) will hopefully start preventing migraine in another month right about when the (lord willing) Botox kicks in. So like, by the end of June I predict 14 migraine days or fewer!
In summary, if all things work out as well as possible, I should be getting 14 or fewer migraine days a month by the end of June. [read: sadly, that is great improvement] April will be another record month and May might still be as well. And that right there is why I give two farts about anything beside getting the kids fed, dressed, and to school. My poor wonderful Mom. HI MOM!!!
ps. I have a sore throat. Also I want to chop my hair OFF!
Sunday, March 2, 2014
The Final March
Me: "Do you ever want to rip your own brain out and just stare at it?" [and ask it what the hell is wrong with it]
My Mom: "No. Goodnight!"
Me: "Goodnight! Sleep well."
1. It's been two years since we stopped eating wheat and corn. It's been two years since we thought we stopped eating wheat and corn. And stuff. And after Sasha puked yesterday and had a shower (and I mopped up the hallway and hosed off the hall carpet on the front lawn) she put on some clothes. Interestingly she put on the same shirt the Emily had on two years ago when we took Grandma some birthday stuff and discovered that Sasha was reactive to wheat. For photographic evidence, see here.
http://wheatcornandmigraines.blogspot.com/2013/03/1-year-of-wingin-it.html
.JPG) |
| And here. |
So, that was something. Sasha is neurologically "sound", aside from the two weeks of migraine so far she's just had, culminating thus far with playing slip-n-slide in the hallway in her own revisit of lunch. It's not as fun as it sounds. Order number one is to get asses to the neurologist and let's fix this shall we? Apparently Imitrex is corn-lite, and while not approved for minors, Emily sure takes it.
2. Speaking of asses to the neurologist, I have a potential future appointment with my once and future neurologist [Lord Willing, assuming the appropriate hoops have been jumped through] once my new insurance kicks in on APRIL FOOLS DAY!!! I'm pretty sure that no other comment is useful, appropriate, or necessary and all I can think of is more expletives anyway. Oh, except that I assume that puts Botox aka ACTUAL help somewhere between May or Maybe never? Haha! I kid...O.o
3. The girls' dad will be here tomorrow and we have 12 shit tons of paperwork to do. And then FECB arrives! And then Aunty comes to visit! And that all takes us to the end of the month. So maybe the final March won't be a death March after all? FECB<3 FECB<3 I love you too Aunty but you're not a cute boy. (;
4. If you adjust for number of calendar days, February actually had more over all migraine days than December, when I had a raging infection that I am just finally recovering the last of my hearing from. I am genuinely surprised by this. And it's hard to surprise me with crap news.
So to recap what I expect from this final March before April Fool's day when I can MAYbe start writing a book about the year I went without botox for no good reason at all because I had insurance and then stopped paying rent so I could have two insurances to help fix my broken brain and my broken kids:
I will be home. Juicing leafy greens, apples, carrots and celery, doing yoga, meditating on and worshiping Jesus, and not feeding Sasha corn out of plastic containers. I will probably have a migraine. If you would like to fold my laundry while I alternately weep, meditate, research, and go all Gallagher on fruits and veggies, I'm sure it will make you a better person somehow and I will praise you highly in the footnotes of my upcoming bestseller The Final March.*
{Deep breaths} See, it's times like this that I love the imaginary tattoo on my arm. For those of you who don't know, it says "I Lack Nothing" in pretty letters. This is the Final March because it's the final big awful push before this horrible grind is over. I fully expect help and rescue and healing for all of us. Maybe not exactly on April fool's day, although how hilarious would that be? (: Maybe sooner, maybe tomorrow? {deeep breath} That would friggin' rule. But whatever yo. What I really want is for Sasha to get better and if she has to eat weird shit the rest of her life then fine but can she at least go back to effing pre-k? We missed chapel AND the block party last week and that is epic amounts of suck right there. Oh but let it be known, I trust God with my babies. I will take all of our asses to as many neurologists and allergists as it takes and juice and smoothie and yogacise through as many hoops as I can manage but this world wearies me and I want another home. I refuse to believe that we were made for this. And if we weren't made for this then clearly we were made for something else, and I trust that God will not leave us hanging. Plus we really do enjoy each others company. And the juice is actually pretty good and so is the yoga. And so is the weeping and meditating for that matter. In fact the only part of this that sucks is the migraines.
Let's do this. Let's March.
*I might forget to do that. If you do come fold laundry, please be sure to make a note of it in the comment section. But only if you also put it away. If you don't put it away, don't bother folding it bc the kids and the dog will just knock it over and step on it and make it back into a pile but thanks anyway. <3
Wednesday, February 5, 2014
Fury and Debilitating Love (rated R)
Expletive Expletive Expletive Expletive Expletive. Darn that it takes so long to type, because in my head it comes out like machine-gun fire. So fast and hot and furious, like spit and anger and definitely not love. Mulitplied by, geeze, at least 50. I was going to say ten thousand but to be fair, these are people we're dealing with and they do have families and such so, I don't ACTUALLY want them murdered in their sleep. I just want them to do their expletiving jobs because when I was a violin teacher, my students had the option of quitting and NONE OF THEM EVER DID. I quit, to have Emily. Why the fuck did I have to call my neurologist's office and tell them how to put in a request with my insurance to inject my face with botulism? If I have to tell them how to just do the goddamned paperwork, do I really want them in charge of injecting me from the shoulders on up, with botulism?
It's taken me about 7 hours to calm down enough to be able to be able to really process this, the scope and magnitude of the problem I'm facing here. First there was the last name mix up. As much as I'd like to have my old last name back asap, I still have my "married" name on all official paperwork. Hah. Paperwork. That implies work was done. Anyway, somewhere between still working in the same office as my old neurologist (even tho I see him at a different location) they managed to stick my maiden name on all my new paperwork. My maiden name isn't on anything, not any ID anywhere, and I was never referred to as such as the old office. My god, if only social security were so efficient at changing names! They say it's not affecting service, I just have to make sure to use it when identifying myself, and then I have to go to hospital records and change it when I get the time and energy thank you so much for that. Then I've been under the impression for two months that we've been waiting on my jagweed insurance to approve the botox since you know, they like to put up as many roadblocks as possible which are the exact words my new neurologist said to me. ("roadblocks" not "jagweeds") Except he forgot to mention that his people have no clue how to do paperwork, a fact I should have picked up from the name fiasco. My bad. And while I spent a month dying and another month recovering, both with record setting amounts of migraine days, I haven't been hounding people for answers as to why approval is taking so long. After just getting a new neurologist took so long. (genuine insurance-at-fault mix up, 'they' tell me) And then just getting an appointment took...so...long.
Here. Here is where I grapple...no. Here is where I fucking lose it. No really, here is where I would turn to dust and blow away but for faithful friends and family and promises and the best kids ever. Oh hell no, no one made it to school today. Because yesterday I decided to not take any rescue meds just because I was sick of it. So come 5 after midnight, me and the heavy meds had a small and quick meeting and it went something like *gulp*. And I tell you what, I met and exceeded the hell out of my only goal for today which was tracking down the medical idiocy for lo and behold I also a) showered and b) did the dishes! I guess it was a banner day now that I think about it. Not bad for letting the natives run wild, not getting up until almost 10:30, and vaporizing MMJ. And now I will show you a way that is beyond comparison...
Among other things, love is not easily angered or resentful. Expletive. Expletive expletive expletive expletive. Although, not quite as machine-gun-y. *throws hands up in frustrations* Well obviously I suck at loving in general, and especially at loving my life right now, and most especially these *shaking in anger* expletiving expletives whom I have chosen to see right now for medical "care" because I thought it would be overall better than going to San Fran or Standford and getting on a 6-9 month wait list just to get in and then waiting for approval and THEN getting shot up with botulism, and skipping naps for every appointment which just means a bonus migraine. Effing hindsight. I'm sure Jesus, that none of this took you by surprise. I need your debilitating love to stop me from hurting myself and others. BECAUSE THE FIRST THING THAT LOVE IS, IS PATIENT AAAAAAAAAAUUUUUGGGHH #FAIL #FAIL #FAAAAIIIIIIILLLL!!!!!!!!!!!!
Amen.
Wait.
Love is...patient? *blink* How long in what language has patient [wait with a good attitude] meant patient [person with a medical need]? It looks weird and french to me. Totally unfair Jesus. Totally unfair and touché, I see what you did there. #wellplayedjesuswellplayed
It's taken me about 7 hours to calm down enough to be able to be able to really process this, the scope and magnitude of the problem I'm facing here. First there was the last name mix up. As much as I'd like to have my old last name back asap, I still have my "married" name on all official paperwork. Hah. Paperwork. That implies work was done. Anyway, somewhere between still working in the same office as my old neurologist (even tho I see him at a different location) they managed to stick my maiden name on all my new paperwork. My maiden name isn't on anything, not any ID anywhere, and I was never referred to as such as the old office. My god, if only social security were so efficient at changing names! They say it's not affecting service, I just have to make sure to use it when identifying myself, and then I have to go to hospital records and change it when I get the time and energy thank you so much for that. Then I've been under the impression for two months that we've been waiting on my jagweed insurance to approve the botox since you know, they like to put up as many roadblocks as possible which are the exact words my new neurologist said to me. ("roadblocks" not "jagweeds") Except he forgot to mention that his people have no clue how to do paperwork, a fact I should have picked up from the name fiasco. My bad. And while I spent a month dying and another month recovering, both with record setting amounts of migraine days, I haven't been hounding people for answers as to why approval is taking so long. After just getting a new neurologist took so long. (genuine insurance-at-fault mix up, 'they' tell me) And then just getting an appointment took...so...long.
Here. Here is where I grapple...no. Here is where I fucking lose it. No really, here is where I would turn to dust and blow away but for faithful friends and family and promises and the best kids ever. Oh hell no, no one made it to school today. Because yesterday I decided to not take any rescue meds just because I was sick of it. So come 5 after midnight, me and the heavy meds had a small and quick meeting and it went something like *gulp*. And I tell you what, I met and exceeded the hell out of my only goal for today which was tracking down the medical idiocy for lo and behold I also a) showered and b) did the dishes! I guess it was a banner day now that I think about it. Not bad for letting the natives run wild, not getting up until almost 10:30, and vaporizing MMJ. And now I will show you a way that is beyond comparison...
Among other things, love is not easily angered or resentful. Expletive. Expletive expletive expletive expletive. Although, not quite as machine-gun-y. *throws hands up in frustrations* Well obviously I suck at loving in general, and especially at loving my life right now, and most especially these *shaking in anger* expletiving expletives whom I have chosen to see right now for medical "care" because I thought it would be overall better than going to San Fran or Standford and getting on a 6-9 month wait list just to get in and then waiting for approval and THEN getting shot up with botulism, and skipping naps for every appointment which just means a bonus migraine. Effing hindsight. I'm sure Jesus, that none of this took you by surprise. I need your debilitating love to stop me from hurting myself and others. BECAUSE THE FIRST THING THAT LOVE IS, IS PATIENT AAAAAAAAAAUUUUUGGGHH #FAIL #FAIL #FAAAAIIIIIIILLLL!!!!!!!!!!!!
Amen.
Wait.
Love is...patient? *blink* How long in what language has patient [wait with a good attitude] meant patient [person with a medical need]? It looks weird and french to me. Totally unfair Jesus. Totally unfair and touché, I see what you did there. #wellplayedjesuswellplayed
Monday, January 27, 2014
Oceans, tears, and my FECB
Fine, FINE! Oh no really, *happy sigh* it's way more than fine, and if it hits the fan and disintegrates, I had my chance and one of you should pick him up, because he's an excellent decision, which is in fact what made me decide to unblock him from facebook and start talking to him again in the first place. My bad. But that's probably another blog entirely, and certainly another story for another day. But since you were asking (and a few of you are now fb stalking me) here's who he is, (who I am) and also why I was front and center stage yesterday, crying and shaking during Both services. This is my blog, and why I may have to re-address it wheatcornmigraineslegosandlightsabers.
Actually, if you want all the gory details of my life, there are like 2 years of posts you can weed through at your own leisure. That's pronounced like 'pleasure', like Captain Picard would say it. Sorry for the typos and general word vomit. As you read, you'll understand why. I guess I'll start with yesterday and work my way back. I haven't been on the worship team in months, most recently because of a killer bout of sinus/ double ear infection, topped off with ever present come-and-go migraine. Migraine is par for the course right now, exacerbated by insurance woes [read: jagweeds], whereas the infection was just a once in a blue moon winter bonus. So finally I get back and I am informed that I get to lead the song Oceans, a song I first became aware of because one of my best friends found it helpful after her infant son went home to Jesus. Let's just pause to digest that shall we? {......pause for reflection......} Okay, so now I'm really learning this song and consciously NOT thinking about how I first became aware of it, because there's no way I'm going to be able to lead this song otherwise. Worship yes, lead, maybe not. But don't worry, apparently there's plenty of drama in my life to derail the leading of this song anyway...
You see, come the bridge where it talks about being led to where my faith is without borders, well, I feel like I've been living there for I don't even know how many years now. As in, life has been senseless and terrifying in just about every possible way for so long, that I haven't even known how to dream anymore and that is not hyperbole. Not that I would have called it bad per se. My family and my friends kick ass, and clearly we have been provided for. But seriously, blind faith and trust leaves you weary as hell. Bone dry weary. Maybe I've been doing it wrong and maybe it's just where I've needed to be. Of course refinement sucks, but so does my attitude sometimes. [read: a LOT] I do know this 'though, that anyone prone to encouraging others also needs a lot of encouraging, and there's just something different when a cute boy who waits two years for you to come around is relentless about encouraging you. :D Enter Curtismeister, who is an old friend, who waited forever...
So, I've been obsessed with Psalm 23 as per my last post. Well lo and behold my first time back to Sunday service in weeks revealed to me that we are doing a series on...PSALM 23!!! So yeah, stoked. (That's californian for 'really excited', like stoking a fire) Somewhere between studying the verses I have been most encouraged by lately, reconnecting with Curtis which has pretty much been the best thing ever, and standing in front of the entire congregation and pouring our guts out together to Jesus, well, it was a #beautifulmess. At least that's what I'm going to tell myself until I watch the recording. :-/ I've been leading worship...holy crap for 21 years! I've never lost it like that before. I must finally be growing up. And I don't think crying and shaking while leading worship counts as 'losing it'. It was definitely new. Change and let go. I lack nothing. Told ya.
Oh yeah, I was supposed to tell you about my FECB, my Fancy East Coast Boyfriend. What am I supposed to say? He's a boy! He likes legos and nerf guns and star wars! Yes Trish, he is aware of and avoiding gluten, happy?!? Not because he hates it, because of our weird family, which he really likes!! He's an introverted nerd like my mom, and he moonlights as a preacher, like my dad. And he's a boy, like the cat. Any questions? Change and let go is scary, but much better than senseless and terrifying. And anyway fear is the mind killer. I will let my fear pass through me. Maybe I WILL get a tattoo after all.
#ilacknothing
Actually, if you want all the gory details of my life, there are like 2 years of posts you can weed through at your own leisure. That's pronounced like 'pleasure', like Captain Picard would say it. Sorry for the typos and general word vomit. As you read, you'll understand why. I guess I'll start with yesterday and work my way back. I haven't been on the worship team in months, most recently because of a killer bout of sinus/ double ear infection, topped off with ever present come-and-go migraine. Migraine is par for the course right now, exacerbated by insurance woes [read: jagweeds], whereas the infection was just a once in a blue moon winter bonus. So finally I get back and I am informed that I get to lead the song Oceans, a song I first became aware of because one of my best friends found it helpful after her infant son went home to Jesus. Let's just pause to digest that shall we? {......pause for reflection......} Okay, so now I'm really learning this song and consciously NOT thinking about how I first became aware of it, because there's no way I'm going to be able to lead this song otherwise. Worship yes, lead, maybe not. But don't worry, apparently there's plenty of drama in my life to derail the leading of this song anyway...
You see, come the bridge where it talks about being led to where my faith is without borders, well, I feel like I've been living there for I don't even know how many years now. As in, life has been senseless and terrifying in just about every possible way for so long, that I haven't even known how to dream anymore and that is not hyperbole. Not that I would have called it bad per se. My family and my friends kick ass, and clearly we have been provided for. But seriously, blind faith and trust leaves you weary as hell. Bone dry weary. Maybe I've been doing it wrong and maybe it's just where I've needed to be. Of course refinement sucks, but so does my attitude sometimes. [read: a LOT] I do know this 'though, that anyone prone to encouraging others also needs a lot of encouraging, and there's just something different when a cute boy who waits two years for you to come around is relentless about encouraging you. :D Enter Curtismeister, who is an old friend, who waited forever...
So, I've been obsessed with Psalm 23 as per my last post. Well lo and behold my first time back to Sunday service in weeks revealed to me that we are doing a series on...PSALM 23!!! So yeah, stoked. (That's californian for 'really excited', like stoking a fire) Somewhere between studying the verses I have been most encouraged by lately, reconnecting with Curtis which has pretty much been the best thing ever, and standing in front of the entire congregation and pouring our guts out together to Jesus, well, it was a #beautifulmess. At least that's what I'm going to tell myself until I watch the recording. :-/ I've been leading worship...holy crap for 21 years! I've never lost it like that before. I must finally be growing up. And I don't think crying and shaking while leading worship counts as 'losing it'. It was definitely new. Change and let go. I lack nothing. Told ya.
Oh yeah, I was supposed to tell you about my FECB, my Fancy East Coast Boyfriend. What am I supposed to say? He's a boy! He likes legos and nerf guns and star wars! Yes Trish, he is aware of and avoiding gluten, happy?!? Not because he hates it, because of our weird family, which he really likes!! He's an introverted nerd like my mom, and he moonlights as a preacher, like my dad. And he's a boy, like the cat. Any questions? Change and let go is scary, but much better than senseless and terrifying. And anyway fear is the mind killer. I will let my fear pass through me. Maybe I WILL get a tattoo after all.
#ilacknothing
Sunday, January 12, 2014
My Tatted Arms
If I were to ever get tattoed, I would probably get the words "Change and Let Go" on my right arm, and "I Lack Nothing" on my left. The words on the right have been a mantra since my eyes became lasers that attempt to root out all things glutenous and corn, on top of our already interesting existence here at #casaespinoza. We wouldn't survive without constantly letting go of things, and changing our definition of not only breakfast lunch and dinner, but also birthdays, holidays, school activities and advocation, travel, church, arts and crafts, shit you name it! But I digress. The words on the left are of course from psalm 23: "The Lord is my shepherd, I lack nothing." Devastatingly simple and obvious, yet easy to forget and hugely consequential. And when you put them together, there is no fear left to hold you back.
Me and my imaginary tattooes have recorded 5 days this month with no migraine rescue meds so far! Which I think think puts me on track to have an even better month than last, which is great since I am not anticipating any more group illness leading to a downward spiral of infections, plugged ears, fits of crying etc.. In fact, so confident were we that our Christmas vacay was topped with a trip to some family's house, no small feat considering the amount of food and meds we have to take! The small mammals ran circles outside all day every day, and we even came home with an outdoor/patio, vintage model cat, Captian VonCatt. He's at least 10, and will hopefully die before Indie, thus emotionally preparing us for her eventual passing. Ah, life. (: Sasha is having a harder time with change and let go, as she wept and had to remover herself from the vet's office at the "saddest news of her life" yesterday upon finding out that Captain is old, and not particularly spry. But he is sweet, and partial to being held and petted.
I was very proud of Sash for working through her feelings yesterday, and even still today. This morning whilst huddling about the heater she asked me how a person could be happy and sad at the same time. This led to a discussion about contentment vs circumstances, and knowing that she was loved all the time no matter what. And possibly also about sleeping baby unicorns...or was that from yesterday? She pretty much IS Agnes from Despicable Me. And Emily was so awesome, trying to help cheer her up as much as possible. They do try to break me in turns, but it's pretty much what I expected. And then they really pull it out sometimes. Thus continues the reminders that life is good, and has hard times which suck, vs life being hard and sucking, a mindset I had inadvertently adopted sometime over the past (mumbles) years. #revelation Oh that's right, I Lack Nothing.
Me and my imaginary tattooes have recorded 5 days this month with no migraine rescue meds so far! Which I think think puts me on track to have an even better month than last, which is great since I am not anticipating any more group illness leading to a downward spiral of infections, plugged ears, fits of crying etc.. In fact, so confident were we that our Christmas vacay was topped with a trip to some family's house, no small feat considering the amount of food and meds we have to take! The small mammals ran circles outside all day every day, and we even came home with an outdoor/patio, vintage model cat, Captian VonCatt. He's at least 10, and will hopefully die before Indie, thus emotionally preparing us for her eventual passing. Ah, life. (: Sasha is having a harder time with change and let go, as she wept and had to remover herself from the vet's office at the "saddest news of her life" yesterday upon finding out that Captain is old, and not particularly spry. But he is sweet, and partial to being held and petted.
I was very proud of Sash for working through her feelings yesterday, and even still today. This morning whilst huddling about the heater she asked me how a person could be happy and sad at the same time. This led to a discussion about contentment vs circumstances, and knowing that she was loved all the time no matter what. And possibly also about sleeping baby unicorns...or was that from yesterday? She pretty much IS Agnes from Despicable Me. And Emily was so awesome, trying to help cheer her up as much as possible. They do try to break me in turns, but it's pretty much what I expected. And then they really pull it out sometimes. Thus continues the reminders that life is good, and has hard times which suck, vs life being hard and sucking, a mindset I had inadvertently adopted sometime over the past (mumbles) years. #revelation Oh that's right, I Lack Nothing.
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