My biggest remotely attainable dream right now is to have a worship night at my house, I think. As in, I think it's attainable, maybe. Damn it, ok probably not, but that's why it's a dream. But it's not like my dream of the girls and my mom and I running a marathon together while eating cheap, nut-laden protein bars. That's more like a "fantasy". Stranger things than worship night at my house have actually happened. You know, like when I got paid for working in the field of my degree and shit like that.
Speaking of paying, here's a fun fact. I'm now taking half the amount of meds I was taking before, milligrams wise. And I'm paying almost 7 times the amount for it. Same medication, smaller pill, fewer milligrams. Because insurance. *facepalm* Yup, still working on that one in my infinite spare time and energy, when I'm not making food for Sasha, or getting migraines. Please you guys, don't ever EVER get any kind of sick ever. Also exciting is that two weeks after Sasha saw her neurologist, she finally started her new prescription. (because the stupid compounding pharmacy dragged their ****ing feet) It's going to take an entire month to wean from the old one tho, so hell if I'm going to know for sure how the new one's affecting her for a good long time. Convenient, since school begins fairly shortly.
My God, school. Maybe Sasha will magically stop getting migraines and not have any new face or body rash. That would be awesome. Maybe she really WILL enter first grade and all I'll have to do is figure out how to feed her at school and keep her safe from corn and fight all Emily's school-food battles too! You know, our lives would be infinitely easier if Sasha could even eat all the available local corn-free food. She could have apples, berries, kiwi, persimmon, beans of all sorts, tomatoes, winter squash, stone fruits, eggs, I mean the list is huge. But for whatever fucking reason, all those foods drive her insane. She absolutely loses her mind and becomes completely unreasonable and throws fits. But, at least now she now has a Physical Therapist who is a Giants fan, who bonus, has an office dog. No one local (who takes her insurance) will see a 6-year-old for Biofeedback so she just got referred to physical therapy instead. Again, don't get sick, and don't let your kids get sick.
See, this right here is why I need a worship night. The problem is, I haven't seen a great reduction in migraine medicine days this month vs the last two. If I can go the next 4 days sans meds tho, it'll be the first time I've had fewer than 10 rescue med days in a month in 2 years, since July 2013. I'm still paying out the nose energy-wise the next day for any more functional days, which is a potential problem with worship night, or in fact any awesome activity requiring effort. And being the limited, drought ridden zucchini season, we're bustin' tail over here to process as much as we can for winter, since it's one of the few foods Sasha can eat that's not a leafy green. And as anyone who as ever busted tail can tell you, it takes quite a bit of effort.
A friend of mine asked recently how many doctors I had seen. I had never stopped to count before and it turns out, more and more just kept coming to mind over the next several days. Between the girls and I and GPs, Allergists, Neurologists, Chiropractors etc, I had officially lost count. I like Sasha's Physical Therapist. He wrote down short term and long term goals, made good eye contact, was a good listener etc. Beside that he had a picture of Matt Cain throwing his perfect game on the wall. I am afraid our medical personnel parade is never going to end, and I don't know how to survive like this. It sure feels like something has to change but I know people live in lots worse circumstances than us. I also know that we were not mean to live in a constant state of haggard, worn, pained, and beaten.
Oh well. Soup(made of greens), zucchini, cabbage, lettuce, broccoli, cheese(one kind), frozen avocado, and fish. For these I am truly and utterly grateful.
Tuesday, July 28, 2015
Wednesday, July 1, 2015
Mehtter
We are better. It has taken most of June for me to realize this, and it's still hard to type as I sit here with my stomach hurting, also having had to give Sasha rescue meds today because we ventured to the aquarium thus "overdoing it." But the numbers are good despite how our bodies feel today.
Ow. Ow. Ow. (says the abdominal migraine) Since going to the hospital for DHE infustions that week in May, I can actually combat some migraines with rest a la years gone by. As in, my head can even go so far as hurting a little, and I can lay down and the migraine might even go away with time instead of taking me out for several days by then. Incredible! That hasn't happened in years. And when I'm not in pain or fighting an active migraine, I am a more functional human being. Still not a normal level of function mind you, but more functional than I have been in months, and any amount of progress is good.
I might even have had several fewer med days this month than last except that I had a dentist appointment one day for cleaning, and then a small cavity filled the next. Two days of people digging in my face and staring at a great glowing orb equals four days of bonus migraine, apparently, but what are ya' gonna do? I have one more small cavity that needs filling on the opposite side of my face next week, wish me luck. They approve my brushing and flossing habits, so how did those even happen anyway?! Maybe something about me not going to the dentist in several years had something to do with it, I don't know.
Stupid stomach, stop hurting!! So anyway, I guess 10 rescue med days a month is well enough to start weaning off the gross amount of anti-seizure meds I'm on. The latest studies show that unless you're an outlier, there really isn't a benefit to being on ten billion milligrams per day like I am. So we'll see how that goes. Of course, abdominal migraine in adults is also rare. Also my new prescription never made it over to the pharm. Did I mention I have a phobia about insurance/medical mistakes? This one will be fixed soon I hope. There's a rumor that backing off on the meds may lead to me having more energy, assuming I don't go all migraineville like every other time we've tried backing off on the meds. But I'm better now, right?! [totally NOT panicking. (0.o)]
Had a fun new pre-migraine symptom today: Not being able to comprehend what other people are saying. It's much more normal to not be able to get words out correctly, and I understand the two are related. I've just never had it happen to me before. I mean, I've had a hard time paying attention to what my mom is trying to tell me before if I'm not feeling well, but this just seemed more pronounced. Normally I feel worse if it's going to be so hard to follow, but tonight I just had no idea what the girls were trying to tell me for a while. Stupid brains. But in happier news, the piano has been unearthed and I have been playing it. So there, suck that Aphasia!
And my dear Sasha. We upped the new meds and she stopped needing rescue meds every damn day! Also her face broke out in unending rash. So I fiddled with a different capsule and it got a bit better, and now I'm fiddling with a different filler. Again, with us luck. Sasha is doing way better on the migraine front unless we leave the house or go anywhere or do anything. So that puts a damper on my getting-her-into-first-grade plans. I mean, progress rules, so I'm stoked that she's not getting medicine overuse headaches from daily caffeine or anything, but...damn it she's SIX YEARS OLD!!!!! I want more for her than perpetual face rash and being stuck at home with me.
So I guess life isn't the toxic wasteland of several months ago. There are fewer rescue meds and more music. No one's life is in imminent danger. But I have more fear than anything. More like trepidation and dread about the long term. I don't bow to it, but all day every day it's there. Even when it's underfoot it's never far. There is little peace in an existence like this. There is jealousy, bitterness, and a hell of a lot of coveting. But I'll take any amount of progress, and I'm very glad we're not where we were. I do hope we keep getting better.
Ow. Ow. Ow. (says the abdominal migraine) Since going to the hospital for DHE infustions that week in May, I can actually combat some migraines with rest a la years gone by. As in, my head can even go so far as hurting a little, and I can lay down and the migraine might even go away with time instead of taking me out for several days by then. Incredible! That hasn't happened in years. And when I'm not in pain or fighting an active migraine, I am a more functional human being. Still not a normal level of function mind you, but more functional than I have been in months, and any amount of progress is good.
I might even have had several fewer med days this month than last except that I had a dentist appointment one day for cleaning, and then a small cavity filled the next. Two days of people digging in my face and staring at a great glowing orb equals four days of bonus migraine, apparently, but what are ya' gonna do? I have one more small cavity that needs filling on the opposite side of my face next week, wish me luck. They approve my brushing and flossing habits, so how did those even happen anyway?! Maybe something about me not going to the dentist in several years had something to do with it, I don't know.
Stupid stomach, stop hurting!! So anyway, I guess 10 rescue med days a month is well enough to start weaning off the gross amount of anti-seizure meds I'm on. The latest studies show that unless you're an outlier, there really isn't a benefit to being on ten billion milligrams per day like I am. So we'll see how that goes. Of course, abdominal migraine in adults is also rare. Also my new prescription never made it over to the pharm. Did I mention I have a phobia about insurance/medical mistakes? This one will be fixed soon I hope. There's a rumor that backing off on the meds may lead to me having more energy, assuming I don't go all migraineville like every other time we've tried backing off on the meds. But I'm better now, right?! [totally NOT panicking. (0.o)]
Had a fun new pre-migraine symptom today: Not being able to comprehend what other people are saying. It's much more normal to not be able to get words out correctly, and I understand the two are related. I've just never had it happen to me before. I mean, I've had a hard time paying attention to what my mom is trying to tell me before if I'm not feeling well, but this just seemed more pronounced. Normally I feel worse if it's going to be so hard to follow, but tonight I just had no idea what the girls were trying to tell me for a while. Stupid brains. But in happier news, the piano has been unearthed and I have been playing it. So there, suck that Aphasia!
And my dear Sasha. We upped the new meds and she stopped needing rescue meds every damn day! Also her face broke out in unending rash. So I fiddled with a different capsule and it got a bit better, and now I'm fiddling with a different filler. Again, with us luck. Sasha is doing way better on the migraine front unless we leave the house or go anywhere or do anything. So that puts a damper on my getting-her-into-first-grade plans. I mean, progress rules, so I'm stoked that she's not getting medicine overuse headaches from daily caffeine or anything, but...damn it she's SIX YEARS OLD!!!!! I want more for her than perpetual face rash and being stuck at home with me.
So I guess life isn't the toxic wasteland of several months ago. There are fewer rescue meds and more music. No one's life is in imminent danger. But I have more fear than anything. More like trepidation and dread about the long term. I don't bow to it, but all day every day it's there. Even when it's underfoot it's never far. There is little peace in an existence like this. There is jealousy, bitterness, and a hell of a lot of coveting. But I'll take any amount of progress, and I'm very glad we're not where we were. I do hope we keep getting better.
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