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.
Sunday, June 29, 2014
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.
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