Pray for me as I storm my GP's office yet again tomorrow, for the second time in two business days. Pray for wisdom and politeness, and that they do my bidding as I become my own neurologist until at least December. I go armed with charts and bottles and dates and frankly the numbers don't lie kids. Either I get back on another preventative med, or I don't make to...I predict the third week in October without being flat outta attack meds.
I love my GP (general practitioner.) She tends to ask good question, be interested, and listen well. I'm going to throw another supplement and a med at her and see what she says. We will no doubt commiserate over tricare's dumbassery. But I do not know what will happen next...I do know that I must have hope to cling to. I can't just sit, ok lay here 15 migraine days into a September that isn't even quite over yet and not have a sleeve full of tricks. Old habits die hard, and the kids have been pulling out all the old clown stuff again. And every day I wake up to a clown painting labeled "Don't Cry Over Spilled Milk" next to my bed. My Dad liked it and hey, it goes with my furniture! #nofoolishnofun And in this case it may be survival of the foolish.
Because I could just wait patiently like a good patient for my appointments, suffer, run out of meds, and watch life crumble with varying speed and force, or I can make myself a huge pain in everyone's ass until hope comes out of hiding. Bat-Crap-Crazy, Food-Allergy-Mom was just phase one of my metamorphosis. Sasha's ears may hurt for 6 more weeks, give or take. They're fine, just healing from a nasty infection and fluid. Emily's stomach started hurting again tonight. She's getting coffee in the morning, pain or no because those suckers like to come roaring back for days if you don't squash 'em good. So pray for me. We've de-glutened, we've de-corned (phase 1), we're pretty much opposed to dairy, and we've been no-nuts forever. We are now on top of that, delving deeply into the realms of the neurological, the insurance dumbtastic, the medical marvelousy and of course, ever bowing in shame and homage to the ever present Laundry Kraaken.
Pray for us.
Oh my gosh you know what I ate tonight? A hamburger from In N Out NOT protein style!!! *chewing fingertips* It was, it was, it was like Christmas dinner. It was like a hug. I literally don't remember the last burger I ate on a bun. Evil evil frankengluten. Oh man...sweet and tasty and satisfying and warm and yummy frankengluten evil bun Mmmmmmmmmmmm...
Wow.. #singlemomfoodporn #prayforme #notjoking
Sunday, September 29, 2013
Saturday, September 28, 2013
The Ridiculon
I guess what I really want is a laser beam to come out of the middle of my forehead. Not to blow stuff up, but to communicate things succinctly. Ok, and sometimes to blow stuff up. It would have saved me so much damn energy on days like Friday, when I spent the time I had, but the energy I didn't explaining why I needed more than one goddamned set of epi pens, how I had already paid Emily's neurologist out of pocket no less, and how I was up a creek until my insurance decided to get their butts in gear, fix their mistake, and approve me a new neurologist already. It would have been nice to have the day before that at the girls' dentist office when I was explaining what corn derivatives do to Sasha, why it's a problem that I can't find ingredients in the products they use (except for potential tree nuts) and why we have to modify the papers if I'm going to sign them. However, no amount of stop-wasting-my-energy-please-beam would have been helpful when lo-and-behold I did magically get approved for a new neurologist the day I stormed the office and demanded answers. Third time really was the charm!
While approval should have taken a week it took a month and a half, thanks to a code mix up somewhere in the bowels of my insurance. And where I was only getting 8-9 migraine days a month on Botox, I've had 13 last month and 14 so far this month. We'll see what the numbers are for this grand, terrible experiment by the time I meet Monsignor new neurologist come December 2. I refuse to speculate on whether or not he'll actually be helpful. *slight wave of nausea* I've ordered one more supplement to add to my regimen, resigned the ability to parent or keep the house clean [at all]for a few months aaaaaaaaaaaaand...I think that should do it. Oh, and I have to ration the meds and time them just right for driving so i can get the kids to and from school, etc & etc.
I literally stayed in bed almost all day today. I took heavy meds last night because after explaining everything to everyone, my body gave out. Is Emily seriously Dr. Michelle's only effing food allergy patient?!? 'Aint nobody got time for that!!!!! Now I'm in long ass crappy road trip mode. Short on gas, short on food, and it's hot outside. Not making it is not an option. Ready, go.
I know it sounds a lot like despair, but it's not. It's processing. I write and burst into tears now so I don't do it while I'm driving...as much. I'm trying to regain patience with my kids. Ugh. I bet there's a german word for when you stare at your own life with morbid curiosity as to what will happen next. In other news, I ate cereal out a salad bowl tonight. And by salad bowl I mean a bowl made of a piece of lettuce.
Me: "Girls, look at this piece of lettuce! It's shaped like a bowl, I could totally eat cereal out of it!"
Em: "Haha, no you couldn't!"
Sasha: "Haha!"
#entertheridiculon
Wednesday, September 4, 2013
No nuts Donuts
I'm hungry, and tired, and I've had a migraine for way too long. 8 days out of 8 and I won't even write down the phrase that just came to mind. It's too late for me to be starting a blog post, but I'm not sure that matters much right now. Mmmmmm, a donut matters right now. Oh the things that come to mind. Really, the important stuff is as follows:
-Sasha's maladies have gone from fever and chills and body aches, to croup, to a nice wet cough, to a double ear infection and plugged up hearing, to just plugged up hearing and only occasional mild ear pain. And it only took about a month to get through all of that. Considering that she hasn't been sick enough for meds in about a year and a half, I'd say that's not bad. But omg...
-Emily's 5 day abdominal migraine went away finally, but not without her fighting me tooth and nail to drink less than a cup of coffee as per her neurologist's instructions. For 4 hours solid.
-In addition to no snacks being served in Emily's class, there is now no birthday food allowed in Emily's and a few other classes at Emily's school, only non-food birthday treats. Because she's not the only kid with allergies, hello!
So, Huzzah, I think I really do only have one school's worth of food to worry about. Which is awesome because I don't think I'd make it otherwise. There is somehow a hold-up in getting a reference to a new neurologist to do botox, imagine that! I am truly a little confused as to why Jesus hasn't healed me yet. I figured this was my chance. I upped all the vitamins and supplements to all the levels that work for everyone else and figured this was my chance. But, whatevs. What can you do but give up daily? I used to try daily but really the key to success is accepting that you're going to fail. You are going to fail and everyone is going to fail but somehow this world keeps spinning doesn't it? The cupcakes don't get made and neither do the beds but somehow the Lord provides something to eat and a place to sleep. And 'though your head may burn and maybe your hair doesn't look the way you want it to, but maybe your kids got to school enough days this week.
I sure hope for better. I keep hoping that some year I'll actually participate in helping at Emily's school, besides of course being that crazy food allergy mom screaming about no-nuts this and that. (You're welcome school) Hey, I actually sold cookies with nuts in them this year! I'm going to pick up frozen cookie dough with nuts in it, not freak out, wrap it in garbage bags, and deliver it to my cousin! You're welcome school!!! But I hope someday to tread water, instead of just floating on the current. I hope some day to dream of swimming, in an actual direction, instead of just treading water. Although, there is a certain freedom in completely letting go, because there is no point in trying to hold on to anything, because it just gives you more migraines than you're already going to get.
It's not as bad as it sounds. Even with 8 days of 8 on migraine meds, I still took care of the kids, with loads of help from my Mom of course. They got to school on some of those days, wore clothes, ate food, got their meds...we may have even left the house voluntarily at some point, I don't really remember. Oh yeah, we totally did! We had an awesome visit with some family! We went to the aquarium, the beach, the whole 9 yards. See, not all bad at all. And I'm so happy to see the kids doing better. I just wonder how long I can let go of everything and be free before I disintegrate. Actually, that's an illusion. That's how I have to think of things, when really I'm wound up so tight I'm about to implode.
Why are there no Gluten, Nut, and Corn free donuts in this house right now? That is the real question. If only Sashily's kitchen were real.
#becauseeatingshouldntsuck #migrainessuck #donutsaregood #sashilysnonutsdonuts
-Sasha's maladies have gone from fever and chills and body aches, to croup, to a nice wet cough, to a double ear infection and plugged up hearing, to just plugged up hearing and only occasional mild ear pain. And it only took about a month to get through all of that. Considering that she hasn't been sick enough for meds in about a year and a half, I'd say that's not bad. But omg...
-Emily's 5 day abdominal migraine went away finally, but not without her fighting me tooth and nail to drink less than a cup of coffee as per her neurologist's instructions. For 4 hours solid.
-In addition to no snacks being served in Emily's class, there is now no birthday food allowed in Emily's and a few other classes at Emily's school, only non-food birthday treats. Because she's not the only kid with allergies, hello!
So, Huzzah, I think I really do only have one school's worth of food to worry about. Which is awesome because I don't think I'd make it otherwise. There is somehow a hold-up in getting a reference to a new neurologist to do botox, imagine that! I am truly a little confused as to why Jesus hasn't healed me yet. I figured this was my chance. I upped all the vitamins and supplements to all the levels that work for everyone else and figured this was my chance. But, whatevs. What can you do but give up daily? I used to try daily but really the key to success is accepting that you're going to fail. You are going to fail and everyone is going to fail but somehow this world keeps spinning doesn't it? The cupcakes don't get made and neither do the beds but somehow the Lord provides something to eat and a place to sleep. And 'though your head may burn and maybe your hair doesn't look the way you want it to, but maybe your kids got to school enough days this week.
I sure hope for better. I keep hoping that some year I'll actually participate in helping at Emily's school, besides of course being that crazy food allergy mom screaming about no-nuts this and that. (You're welcome school) Hey, I actually sold cookies with nuts in them this year! I'm going to pick up frozen cookie dough with nuts in it, not freak out, wrap it in garbage bags, and deliver it to my cousin! You're welcome school!!! But I hope someday to tread water, instead of just floating on the current. I hope some day to dream of swimming, in an actual direction, instead of just treading water. Although, there is a certain freedom in completely letting go, because there is no point in trying to hold on to anything, because it just gives you more migraines than you're already going to get.
It's not as bad as it sounds. Even with 8 days of 8 on migraine meds, I still took care of the kids, with loads of help from my Mom of course. They got to school on some of those days, wore clothes, ate food, got their meds...we may have even left the house voluntarily at some point, I don't really remember. Oh yeah, we totally did! We had an awesome visit with some family! We went to the aquarium, the beach, the whole 9 yards. See, not all bad at all. And I'm so happy to see the kids doing better. I just wonder how long I can let go of everything and be free before I disintegrate. Actually, that's an illusion. That's how I have to think of things, when really I'm wound up so tight I'm about to implode.
Why are there no Gluten, Nut, and Corn free donuts in this house right now? That is the real question. If only Sashily's kitchen were real.
#becauseeatingshouldntsuck #migrainessuck #donutsaregood #sashilysnonutsdonuts
Tuesday, August 13, 2013
*edited for privacy OR 2nd grade round 1
I'm glad there was peanut butter in Emily's class on only the second day. You know, let's knock this out early. I love Emily's teacher, she was on top of it. First a parent asked if she could bring cupcakes for her kid's birthday today. Her teacher said No, because of the food allergy issue. She said that the birthday mom could bring apples and carrots. Boom! So what did birthday mom do? Bring apples with caramel dip. And when the caramel dip ran out, she whipped out PEANUT BUTTER?!?!! So, Emily high tailed it and now I'm writing my first letter of the year. Em's teacher said if stuff keeps happening like this we're going to ban food from the classroom altogether and just have a birthday crown and stickers or something. My heart sang!!! If you missed my jubilation a few days ago, there will be no classroom snacks this year already. So if we can get this birthday crap nailed down, I may just have one school to freak out about instead of two. That's only half as bad! Ok, so here's the letter* I'm sending to school with Em tomorrow. We'll see how atrociously it gets edited and then sent to the parents. Or maybe, just maybe it really is a new year...
Happy Second Grade!
I must admit, this letter never gets easier to write. Due to Emily’s life-threatening nut allergy, I need your help to keep her safe in the classroom. Peanuts, Tree nuts, basically every nut on the planet could very easily kill Emily if she eats it, plain and simple. There is also a risk for severe, life-threatening reaction if nut products or particles even get on her skin or if she breathes in too many air particles contaminated with nuts. Scary stuff. Emily has also had reactions to Pineapple, Pomegranate, and Asparagus, but none so scary as the reactions she’s had to nuts. And all it takes is one mistake one time for anyone with a nut allergy’s life to be over, even with all the proper medications and procedures in place. (Google Natalie Giorgi’s tragic death at a family camp in Sacramento at the end of last month. http://www.sacbee.com/2013/07/30/5607195/years-of-caution-about-peanut.html)
To make second grade safe and awesome, I’m asking for your help in two ways:
- When bringing food into the classroom for birthdays or other celebrations, please refrain from any Nuts or Nut products of any kind such as peanut butter, trail mix, or nutella. In the cafeteria there is a “No Nuts” table where Emily and the other nut allergy kids can safely sit. (Last year ours was the smallest school in the district, yet had the highest concentration of nut allergy kids!) In the classroom, it’s just too closed an environment and it’s also where the students spend all their time together.
- If anyone plans on bringing food into the classroom to share for any reason, please let me know via email a couple of days ahead so that I can plan something for Emily since most products from bakeries aren’t safe due to cross-contamination. Emily has spent the last two years coming home disappointed because someone surprised the class with cupcakes or treats for a birthday that weren’t safe for her to eat, even though it was against class policy to deviate from the birthday celebration schedule, when I would have known to plan a safe snack for her. That’s life with a nut allergy, but I could very easily just pack her a safe treat if I know ahead of time. I’m not sure what the class policy on birthdays will be this year, but if there’s going to be food, please let me know so I can be sure to have something for Emily! (:
Thanks for your help Parents! If you have any questions, please ask. I may not have covered everything and I love talking about food allergies. Emily’s younger sister has Wheat and Corn allergies, so we make and eat all kinds of weird food!
Emily’s Mom
Thursday, August 1, 2013
Sashily's Kitchen
There are a lot of mile markers in life latey. All our birthdays are happening, we've been a year and a half without wheat or corn, and we did our first nut, corn, gluten, and dairy-free camping trip. (It was our family reunion, and someone else brought nuts every, single, day. Don't get me started.) But everything being food related, stresses me out to some degree. Perhaps it's all exacerbated by the fact that I don't know when/if I'm getting botox again since my insurance changed carriers and I have to change neurologists, and there aren't exactly a plethora of neurologists who do botox and take my insurance. Botox for migraine is expensive as hell. And let me tell you, hell is expensive. Right now I'm in the jump-through-hoops-and-wait phase. Speaking of neurology, Emily has to change neurologists too. Hers left the practice where she went, not sure why. What's going on man?!? Emily got a lot of migraines this summer compared to the previous 6 months. Hopefully things settle down once school starts, and don't get worse before they get better. Blegh.
Anyway, the beginning of school seems like the REAL New Year to me, possibly because I come from a family of teachers. My New Year's resolution is to avoid anti-anxiety meds. I will do this by following Grumpy Cat and Honest Toddler. Funny thing, for my birthday I want a new pill box, one that is wooden and won't break, and is handmade in Canada. My mom already bought me a sensible bra. Can you say #old?!? Well, Sasha wants a new carseat for her birthday and that's pretty sensible, and she's gonna be 5 and not 34. Maybe we're just all kinds smart like that. Maybe we both know that we're not going to get what we really want. Sasha's not going to get a pet unicorn, and I'm not going to get a personal assistant/food allergy advocate.
But maybe no forgetful parent will bring nuts to class for snack this year. And maybe no forgetful teacher will actually go so far as to hand them out if nuts actually make it in. And since I figured out how to sorta make gluten and corn-free paint, maybe Sasha can fingerpaint in Pre-K without getting itchy from all the cornstarch. And maybe this is the year I'll have the energy to actually make her some rice flour playdough so she can have that to play with as well. And I can still hope beyond hope that there won't be food activities every single week at one school or the other. Maybe anti-anxiety meds aren't a bad idea. Why did my massage therapist have to move away?
I heard a sermon last week on fear, not long after a bible study question asked me what I feared. I fear earthquakes and driving a stick shift. (-;< But seriously, I dread persistent suffering. Because that is pretty much my life, and it sucks. Having no choice but to stand in the kitchen and make things out of weird specialty ingredients with recipes I have tweaked to go from simply Gluten Free to Gluten, Nut, Corn, and Dairy Free WITH a migraine, is what I not so much fear as dread. Because it will happen, a lot. I also dread having to as politely as possible, communicate the importance of keeping Emily's classroom nut-free. It sounds simple. It is not. And then there will be unforeseen food issues all year, I promise. So I need to have a freezer and pantry stocked and ready to go and a calm cool head ready to deal. With a migraine. Lest Emily die in school or Sasha's hair start falling out again. Iiiiiiiiiinhaaaaaaaale.....Eeeeeeeexhaaaaaaaaale.......
Ok, on a separate but related topic, I would love another title besides [bat-crap-crazy]Food-Allergy-Mom, Musician-Has-Been. I make kick ass, mostly organic marshmallows. (I haven't ordered organic gelatin yet, but hopefully it works just the same.) Now, the problem with me giving music lessons post-children or doing any serious job beside keeping my children alive, is that I barely have the energy to do that. But in some dream of mine, I have energy to both feed my kids AND make kick ass organic marshmallows in a variety of flavors, and actually sell them to unsuspecting patrons. Then when I introduce myself to people, I wouldn't sound completely pathetic. Instead of saying, "My ex-husband pays me to keep our children alive, and also I get heinous migraines all the effing time." I could say, "But I also handmake allergy-friendly kick-ass organic marshmallows, some of which are dipped in fair-trade chocolate. Here's my card." And it would look awesome, of course. Fun to think about at least. Makes me want my decaf coffee coconut marshmallows. Mmmmm...
Sashily's Kitchen "because eating shouldn't suck"
#sashilyskitchen #becauseeatingshouldntsuck #screwyoufoodallergies
Anyway, the beginning of school seems like the REAL New Year to me, possibly because I come from a family of teachers. My New Year's resolution is to avoid anti-anxiety meds. I will do this by following Grumpy Cat and Honest Toddler. Funny thing, for my birthday I want a new pill box, one that is wooden and won't break, and is handmade in Canada. My mom already bought me a sensible bra. Can you say #old?!? Well, Sasha wants a new carseat for her birthday and that's pretty sensible, and she's gonna be 5 and not 34. Maybe we're just all kinds smart like that. Maybe we both know that we're not going to get what we really want. Sasha's not going to get a pet unicorn, and I'm not going to get a personal assistant/food allergy advocate.
But maybe no forgetful parent will bring nuts to class for snack this year. And maybe no forgetful teacher will actually go so far as to hand them out if nuts actually make it in. And since I figured out how to sorta make gluten and corn-free paint, maybe Sasha can fingerpaint in Pre-K without getting itchy from all the cornstarch. And maybe this is the year I'll have the energy to actually make her some rice flour playdough so she can have that to play with as well. And I can still hope beyond hope that there won't be food activities every single week at one school or the other. Maybe anti-anxiety meds aren't a bad idea. Why did my massage therapist have to move away?
I heard a sermon last week on fear, not long after a bible study question asked me what I feared. I fear earthquakes and driving a stick shift. (-;< But seriously, I dread persistent suffering. Because that is pretty much my life, and it sucks. Having no choice but to stand in the kitchen and make things out of weird specialty ingredients with recipes I have tweaked to go from simply Gluten Free to Gluten, Nut, Corn, and Dairy Free WITH a migraine, is what I not so much fear as dread. Because it will happen, a lot. I also dread having to as politely as possible, communicate the importance of keeping Emily's classroom nut-free. It sounds simple. It is not. And then there will be unforeseen food issues all year, I promise. So I need to have a freezer and pantry stocked and ready to go and a calm cool head ready to deal. With a migraine. Lest Emily die in school or Sasha's hair start falling out again. Iiiiiiiiiinhaaaaaaaale.....Eeeeeeeexhaaaaaaaaale.......
Ok, on a separate but related topic, I would love another title besides [bat-crap-crazy]Food-Allergy-Mom, Musician-Has-Been. I make kick ass, mostly organic marshmallows. (I haven't ordered organic gelatin yet, but hopefully it works just the same.) Now, the problem with me giving music lessons post-children or doing any serious job beside keeping my children alive, is that I barely have the energy to do that. But in some dream of mine, I have energy to both feed my kids AND make kick ass organic marshmallows in a variety of flavors, and actually sell them to unsuspecting patrons. Then when I introduce myself to people, I wouldn't sound completely pathetic. Instead of saying, "My ex-husband pays me to keep our children alive, and also I get heinous migraines all the effing time." I could say, "But I also handmake allergy-friendly kick-ass organic marshmallows, some of which are dipped in fair-trade chocolate. Here's my card." And it would look awesome, of course. Fun to think about at least. Makes me want my decaf coffee coconut marshmallows. Mmmmm...
Sashily's Kitchen "because eating shouldn't suck"
#sashilyskitchen #becauseeatingshouldntsuck #screwyoufoodallergies
Friday, June 14, 2013
Dark Energy
God,
Change my attitude toward life and food, if not my circumstances.
Change my tolerance to the antics of my children, if not the amount of energy I have.
Change my lust for energy, if not our tolerance for pesticidal corn.
Change my desire to tolerate pesticidal corn.
Amen.
Definition of stupid:
Being surprised that corn makes me itch the way chocolate and wheat do. Um, corn makes Sasha's skin come off and hair fall out. And I am surprised WHY that I am sensitive to it? Because I am #stupid. Or maybe it's just hard letting go of what little remains, like chips and guac from Chipotle. At least we can still have guac. I am just coming to terms over and over again with the fact we have to make everything. everything. (every. thing.) And bless my friends who find us recipes, seriously. But now I'm trying to juggle and shake out of the space-time continuum the energy that isn't there to make every. thing., while inside me I try to subdue the selfish beast that is tired of suffering and feeling like shit all the time.
Whoa momma, deep breaths.
Because, I know people with babies in the hospital, people with toddlers in and out of the hospital, others who sold everything and moved to an orphanage in Haiti where they see tragedies all too often, and still others who sold everything and moved to other countries to illegally spread to gospel, one of whom is currently kicked out and separated from the rest of his family. I look to them for inspiration, because the roads they walk are not easy, to put it mildly. And I know I can walk this sucky, sucky road. But I need to do it differently. I know there are ways to suck less. But how oh how?!
We are one week into summer and we're 3 for 3 for migraines, the girls and I. (I've actually had 2, and one was super heinous BLEGH!!!) My mom hasn't had one, but she's got a week of school left. Em hadn't had a real migraine since December so that's not really so bad, but poor Sasha finally got her very own migraine journal app on my phone. It's a rite of passage unfortunately in this house. Changing routines is always hard, there's the end-of-school stress let-down, and who knows how much the girls are actually taking in the news that 1. Daddy has a girlfriend and 2. He's having a baby with her. (Sailor *smh*) I am worried about that kid's future since the severe and life threatening food allergies come from Daddy's side. Lord help his baby momma...and her 2 other kids...
Contented:
feeling or showing satisfaction with one's possessions, status, or situation
So,
Food - check
Clothes - check
Shelter - check
Kids in their bedroom next to mine breathing unassisted - check
Contented - not even close
God, if you let me live another day, surely you must be willing to change me somehow. Surely I am not destined to stay this same mom, this same musician, this same friend, this same person. I absolutely refuse to believe that. Amen.
Yup. I feel better already.
Change my attitude toward life and food, if not my circumstances.
Change my tolerance to the antics of my children, if not the amount of energy I have.
Change my lust for energy, if not our tolerance for pesticidal corn.
Change my desire to tolerate pesticidal corn.
Amen.
Definition of stupid:
Being surprised that corn makes me itch the way chocolate and wheat do. Um, corn makes Sasha's skin come off and hair fall out. And I am surprised WHY that I am sensitive to it? Because I am #stupid. Or maybe it's just hard letting go of what little remains, like chips and guac from Chipotle. At least we can still have guac. I am just coming to terms over and over again with the fact we have to make everything. everything. (every. thing.) And bless my friends who find us recipes, seriously. But now I'm trying to juggle and shake out of the space-time continuum the energy that isn't there to make every. thing., while inside me I try to subdue the selfish beast that is tired of suffering and feeling like shit all the time.
Whoa momma, deep breaths.
Because, I know people with babies in the hospital, people with toddlers in and out of the hospital, others who sold everything and moved to an orphanage in Haiti where they see tragedies all too often, and still others who sold everything and moved to other countries to illegally spread to gospel, one of whom is currently kicked out and separated from the rest of his family. I look to them for inspiration, because the roads they walk are not easy, to put it mildly. And I know I can walk this sucky, sucky road. But I need to do it differently. I know there are ways to suck less. But how oh how?!
We are one week into summer and we're 3 for 3 for migraines, the girls and I. (I've actually had 2, and one was super heinous BLEGH!!!) My mom hasn't had one, but she's got a week of school left. Em hadn't had a real migraine since December so that's not really so bad, but poor Sasha finally got her very own migraine journal app on my phone. It's a rite of passage unfortunately in this house. Changing routines is always hard, there's the end-of-school stress let-down, and who knows how much the girls are actually taking in the news that 1. Daddy has a girlfriend and 2. He's having a baby with her. (Sailor *smh*) I am worried about that kid's future since the severe and life threatening food allergies come from Daddy's side. Lord help his baby momma...and her 2 other kids...
Contented:
feeling or showing satisfaction with one's possessions, status, or situation
So,
Food - check
Clothes - check
Shelter - check
Kids in their bedroom next to mine breathing unassisted - check
Contented - not even close
God, if you let me live another day, surely you must be willing to change me somehow. Surely I am not destined to stay this same mom, this same musician, this same friend, this same person. I absolutely refuse to believe that. Amen.
Yup. I feel better already.
Tuesday, May 28, 2013
How the Millenium Falcon Saved Us
The phrase "just to get corn-free meds" is a little misleading. There's no "just to get corn-free" anything in this country. I need to learn to shake it off better, or maybe just roll with it, the fight to get corn-free anything. At least when I marched into that Doctor's office today I had cooled off from Friday, when I had to explain our entire family history, what happens to Sasha when she gets corn, and about 6 times each that no, I don't want a liquid antihistamine or acetaminophen because it will have corn in it and no, I don't want a pill because it will have corn in it and yes, I will go online and purchase pharmaceutical equipment if I have to and measure half-capsules worth of drugs and package them myself even though I know it sounds crazy because I'm a food-allergy mom and we're all bat-crap crazy and will you just call the effing pharmacy like the Pharmacist who showed me the jars of what he's going to use asked me to ask you to do and no, I don't want to go to a different effing pharmacy, what is your problem!!!!! And in the end, she didn't call the pharmacy, her sorry ass "prescription" didn't go through (for the second time from that office) and I had to get notes from my cousin's neighbor (the Pharmacist) take them back to the Doctor's office, and threaten to fire her and go to a new office entirely when suddenly T-minus one hour later...I get a phone call from the Doctor saying that I finally win. But of course she didn't use those words. *sigh* I may fire her anyway.
My cousins's neighbor explained that it's hard for Doctors get prescriptions right electronically when they have to think outside the box. I believe it. Even he had funny looks on his face when I explained what happens to Sasha when she gets corn, and how I have to call companies to ask about the sources of their ingredients, and also when I showed him the list of corn derivatives from one of the corn allergen websites. I just wish there was a badge I could flash at stupid Doctors, a certification of some kind for "Bat Crap Crazy Food Allergy Mom: Knows Her Shit". If it's never Not going to be a battle, I may as well have a cool badge or something, geeze. I even impressed myself by whipping out the source of the filler my cousin's neighbor was going to use in the capsules, were we ever to get a proper prescription!
I guess it didn't feel good when the Doctor said that what I was asking sounded crazy. It also didn't feel good when the day of the appointment, the office called and said that her primary care physician retired and insurance wouldn't cover the appointment until I called and changed her primary, information it would have been nice to have before before the DAY OF THE APPOINTMENT. Supposedly I was successful in the following trail of phone calls it took to make that happen, I pity the fool who wants to fight me on that one. Not 5 minutes after dealing with that mess I had to walk out of the house to Sasha's last-day-of-school festivities, nearly in tears but for the giant lego starship my Mom just bought me.
I realize I'm not a 10-year-old boy. But I do live with my Mom, and that has to count for something. I pay rent, and do dishes and laundry so, whatever. Mom must've seen my countenance lift when I saw the giant box way up high, and for whatever reason decided to talk the guy in the toy store down in price and with her teacher discount, paid less than you can get that thing anywhere, promise. Oh wait, I totally pointed it out, that's right. Anyway, yesterday with my other single mom friend and her three boys and my two girls we had the most epic Star Wars lego day ever, complete with light saber fights. Fake light sabers of course. But as I can't have a chocolate croissant or any much other comfort food because I'm defective and don't really love ice cream, just thinking about putting the Millenium Falcon together really did a lot lift my spirits. And thinking about how my mom friend and I geeked out over it while the kids were outside...oh my gosh, that was the best. And I still have to finish putting it together!
Incidentally, I'm also playing a lot of music the next couple of weeks, singing and playing both guitar and piano, which is something I haven't done in I'm not entirely sure how long, but probably years. It will be good to throw myself into that, as long as my body holds up. Nerdfest, musicfest, that should help with the stresses of the ignorance of the medical world vs. Food-Allergy-Mom-Who-Can't-Have-Wheat-Or-Chocolate. At least I can sing and put together the Millenium Falcon that my mom bought me. My other single mom nerd friend just texted me to ask if I had worked on the ship today. Omg, life is so good...
Incidentally, I'm also playing a lot of music the next couple of weeks, singing and playing both guitar and piano, which is something I haven't done in I'm not entirely sure how long, but probably years. It will be good to throw myself into that, as long as my body holds up. Nerdfest, musicfest, that should help with the stresses of the ignorance of the medical world vs. Food-Allergy-Mom-Who-Can't-Have-Wheat-Or-Chocolate. At least I can sing and put together the Millenium Falcon that my mom bought me. My other single mom nerd friend just texted me to ask if I had worked on the ship today. Omg, life is so good...
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