Monday:
-Physical Therapy appointment for migraine (Sasha)
-Call Sasha's Neurologist and tell him that her migraines are getting progressively more frequent since switching meds.
Tuesday:
-Physical Therapy appointment for migraine (Me)
-GP appointment so we can get Emily's Epi Pens refilled
I think the rest of the week is pretty clear tho. In that time I need to dive headfirst into homeschooling Sasha for first grade since she's tanking again, and as always, keep processing summer food so she can eat all winter (fingers crossed). Aw shit, I forgot about the phone calls I have to make regarding insurance mistakes about Em's last allergist appointment, and again, insurance mistakenly thinking Sasha has more insurance than she actually has.
^^^^^ All of this right here is why I fantasize about a swift and sudden car wreck taking us all out. I would think only having 5 migraine rescue med days so far this month would really be helping things, and maybe it has been. But being able to see things more clearly isn't always such a snappy thing, you feel? I have not figured out how the special needs moms do it. I would imagine there is some focus on the positive aspects of living life. *cricket, cricket* I know it could be worse, it could always be worse.
I think probably the "invisible diseases" aspect of our live is hard. You can't tell by looking at us that something is wrong. You wouldn't know that Sasha can't drink bottled water or play outside for too long without having a reaction or getting a migraine. You wouldn't know that I have to take a nap every day at the same time without fail (which is a hell of a lot harder than it sounds) or I get a migraine, or if I overexert myself I get a migraine, or if the lights are too bright or if it's too hot or if it's hormone week or if I get sick, I get a migraine. You wouldn't look at us and know that none of us can eat the same foods without itching, having diarrhea, getting rashes, losing our minds, or going into anaphylactic shock. So actually, all of This is why I fantasize about that swift and sudden car wreck. That other stuff is just icing on the damn cake that no one can eat.
I don't know how the other special needs mom explain everything to everyone all the time. I'm not even talking about ogling strangers, I mean just catching people up since it's so hard to keep up! And also because our problems are so bizarre, some people can't seem to remember what I tell them anyway. And then there's the doubters, the justification I sometimes feel the need to give. You know, when people can't wrap their minds around your life, so you get the vibe that they're blaming you somehow, like maybe it's all in your head. "Are you SURE? Because (I have a friend who..., I read somewhere..., I found this website etc.) I envy those who get to have normal conversations, like about where they went, what they did, and what they ate. My god...
So all that aside, all, that, aside...
Sunday, August 23, 2015
Tuesday, July 28, 2015
grain of joy
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.
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.
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.
Friday, June 5, 2015
5 of 6
I'm not sure how we survived today, but we did. I guess it was a series of unscheduled naps, new meds, good old fashioned sucking up the pain, and plenty of the usual awkward conversation. And as much as I hated the aberration in schedule among other things, I'm glad we did it, and I'm glad it's over. We survived the last gd surprise food of the school year *huge eye roll*, and we are officially on summer break, even my mom.
I met a nice parent today, one I don't usually talk to. I suppose that's why she assumed I was married. (never do that plz) That's probably also why the fact that I homeschool one kid for medical reasons came up. She got my address to invite us to a summer birthday party, even after our conversations about food allergies, but I don't know if it's because she said she wanted it at the beginning of the the conversation and she felt obligated or what. Thankfully I didn't spend the whole conversation having to explain our life, so we'll see. I mean, just most of it. But the fact I had a whole conversation is probably a triumph.
See, today is Friday and that normally has us locked in to the Friday farmers market, rain or shine, school activity, migraine or otherwise. But since Sasha failed the blueberries and more people are selling zucchinis now, the Saturday and Sunday markets are more viable shopping options. Selling point one. Also Sasha has been 6 consecutive days without coffee, and 5 of 6 days without any rescue meds at all. Selling point two. HUGE selling point actually. But Debbie Downering the whole thing is the fact that my noggin's been aching for a few days. *smh* But being the last day of school with bonus surprise food I was alerted to at 6:50 this morning, I figured I could suck it up since the other stars were aligned. I'm not sorry. We made it, and Lord willing we'll be able to get all the food we need for Sasha this week between the Saturday and Sunday markets, and if we're really lucky, just the Saturday market.
Seriously, I've been praying and screaming at God for some sort of progress somewhere, anywhere be it food or on the migraine front. Emily has been cruising since December of 2013, and since we cut the gluten and dairy, she has really been doing well. She has even remarked that she can run faster and longer, and keep up with the other kids while playing soccer, not to mention her way improved behavior. Now she's back to her normal stubborn self as opposed to her super awful self. But for Sasha to be nearly a week without rescue meds is something I didn't know if I'd ever see. It's such an intimidating way to live, with these monsters in your brain, and in your children's brains. It's just a waiting game now, wondering how well the meds will work for how long. The monsters will never go away.
I feel like today was sort of like learning how to swim. I've just had to hold on to the wall for so long, and for the first time in a long time, I was able to let go for just a moment. I splashed around, got a stitch in my side, swallowed a bunch of water, and got back to the side as quickly as possible. I definitely had to take rescue meds when we got home today, and I'm still waiting for the DHE to kick in fully. Two more weeks and we'll see. But I've got more physical therapy coming, and I'm going to meditate my face off if it kills me. If Sasha is feeling human again, that really opens up some options, even if her diet is still insanely limited.
I do hope my head stops hurting tomorrow. We have a lot of cleaning and we'll have a lot of food processing to do. Plus it sucks ass when your head has hurt for days and days in a row. Also I want to enjoy the excitement of life again. I remember loving life, rafting, swimming the rapids, and jumping off rocks into the water even though it scared me. Holy geeze, I used to surf! Never very well at ALL, but I would dream of being tumbled in a wave and those were good dreams. It would be great to get back in the water tomorrow.
I met a nice parent today, one I don't usually talk to. I suppose that's why she assumed I was married. (never do that plz) That's probably also why the fact that I homeschool one kid for medical reasons came up. She got my address to invite us to a summer birthday party, even after our conversations about food allergies, but I don't know if it's because she said she wanted it at the beginning of the the conversation and she felt obligated or what. Thankfully I didn't spend the whole conversation having to explain our life, so we'll see. I mean, just most of it. But the fact I had a whole conversation is probably a triumph.
See, today is Friday and that normally has us locked in to the Friday farmers market, rain or shine, school activity, migraine or otherwise. But since Sasha failed the blueberries and more people are selling zucchinis now, the Saturday and Sunday markets are more viable shopping options. Selling point one. Also Sasha has been 6 consecutive days without coffee, and 5 of 6 days without any rescue meds at all. Selling point two. HUGE selling point actually. But Debbie Downering the whole thing is the fact that my noggin's been aching for a few days. *smh* But being the last day of school with bonus surprise food I was alerted to at 6:50 this morning, I figured I could suck it up since the other stars were aligned. I'm not sorry. We made it, and Lord willing we'll be able to get all the food we need for Sasha this week between the Saturday and Sunday markets, and if we're really lucky, just the Saturday market.
Seriously, I've been praying and screaming at God for some sort of progress somewhere, anywhere be it food or on the migraine front. Emily has been cruising since December of 2013, and since we cut the gluten and dairy, she has really been doing well. She has even remarked that she can run faster and longer, and keep up with the other kids while playing soccer, not to mention her way improved behavior. Now she's back to her normal stubborn self as opposed to her super awful self. But for Sasha to be nearly a week without rescue meds is something I didn't know if I'd ever see. It's such an intimidating way to live, with these monsters in your brain, and in your children's brains. It's just a waiting game now, wondering how well the meds will work for how long. The monsters will never go away.
I feel like today was sort of like learning how to swim. I've just had to hold on to the wall for so long, and for the first time in a long time, I was able to let go for just a moment. I splashed around, got a stitch in my side, swallowed a bunch of water, and got back to the side as quickly as possible. I definitely had to take rescue meds when we got home today, and I'm still waiting for the DHE to kick in fully. Two more weeks and we'll see. But I've got more physical therapy coming, and I'm going to meditate my face off if it kills me. If Sasha is feeling human again, that really opens up some options, even if her diet is still insanely limited.
I do hope my head stops hurting tomorrow. We have a lot of cleaning and we'll have a lot of food processing to do. Plus it sucks ass when your head has hurt for days and days in a row. Also I want to enjoy the excitement of life again. I remember loving life, rafting, swimming the rapids, and jumping off rocks into the water even though it scared me. Holy geeze, I used to surf! Never very well at ALL, but I would dream of being tumbled in a wave and those were good dreams. It would be great to get back in the water tomorrow.
Wednesday, May 27, 2015
l'Hôpital
So, hospital week. My left arm looks like it's been run over by a car. There is tape remnant all over it as well as the other arm and my torso from the heart monitor, but my left arm is bruised up from the failed IV attempts. And that tape is nasty crap that doesn't come off but with a hard scrubbing with alcohol. Actually, 5 days out and some of it is starting to pick off, but only just. I try to wear long sleeves so as not to be reminded of my stay. I'll tell you the good things first.
1. Everyone was super nice. That goes from my doctor to every single nurse to the kitchen staff to the lady who cleaned the room. Absolutely stellar. I felt very cared for and I couldn't ask for better.
2. The food was good, tho I had no appetite for it.
3. I had some lovely visits from friends and family, and of course my mom brought my babies to see me every day and sometimes twice.
Everything else about my stay sucked. I threw up a couple of times while we tried to figure out how to best get the DHE into my system. We got it figured out finally, and then had to stay on top of another common side effect, diarrhea. So basically it was coming out both ends. This required meds on meds on meds, which meant all the stuff I brought to occupy me was worthless, as I was a giant med zombie the whole time, stuck in a room, attached to wires coming off both arms and my chest. This is an interesting conundrum because while you're wired and drugged, they want you to "get up and move around" so you don't get blood clots in your legs and die.
So besides having things coming out both ends while simultaneously being covered in wires, then having to keep said wires out of the toilet during clean up, I had to be a giant wired med-zombie, stuck in a room, forcing myself to walk back and forth, back and forth, back and forth. For 5 days. I watched 3 movies, read a few pages of one book that I brought, and that's all. Oh, I did manage to knit a little on my super easiest knitting. Gah, even writing and proofreading about it makes my stomach a little nauseated...
It was challenging to not lose it. The nurses kept trying to entice me to eat and kept asking if I wanted crackers or a starbucks run. I just wanted to go home. It was such a mental battle. Good thing my mentals are used to battling.
Oh, and forget any meaningful sleep while in hospital, so throw that onto the med zombie. So when I got home, I crashed for a couple of days, and kept waking up thinking I was still attached to wires. Then yesterday I had to take Sasha to her follow up at Standford, where I learned we will be upping the dosage of her new useless meds by 50%, in the hopes that somehow THIS time they will work. That was so worth the all night migraine I had. *eye roll*
So anyway, the DHE infusions I endured at the hospital for 5 days can take up to a month to kick in. But already I feel different. More functional to be sure. It's hard to know how to take life at this point since I tend to overdo things the minute I am able. I had to take Sasha to Stanford, so that one's on the universe. It'll be interesting to see how things progress from here. I'm hoping for no more migraines obviously. I'll be keeping up with the physical therapy for now, and waiting for the infusions to kick in. Thankfully it was a one and done situation, where I don't EVER have to go back to the hospital for that. I swear I will never take peeing for granted again.
1. Everyone was super nice. That goes from my doctor to every single nurse to the kitchen staff to the lady who cleaned the room. Absolutely stellar. I felt very cared for and I couldn't ask for better.
2. The food was good, tho I had no appetite for it.
3. I had some lovely visits from friends and family, and of course my mom brought my babies to see me every day and sometimes twice.
Everything else about my stay sucked. I threw up a couple of times while we tried to figure out how to best get the DHE into my system. We got it figured out finally, and then had to stay on top of another common side effect, diarrhea. So basically it was coming out both ends. This required meds on meds on meds, which meant all the stuff I brought to occupy me was worthless, as I was a giant med zombie the whole time, stuck in a room, attached to wires coming off both arms and my chest. This is an interesting conundrum because while you're wired and drugged, they want you to "get up and move around" so you don't get blood clots in your legs and die.
So besides having things coming out both ends while simultaneously being covered in wires, then having to keep said wires out of the toilet during clean up, I had to be a giant wired med-zombie, stuck in a room, forcing myself to walk back and forth, back and forth, back and forth. For 5 days. I watched 3 movies, read a few pages of one book that I brought, and that's all. Oh, I did manage to knit a little on my super easiest knitting. Gah, even writing and proofreading about it makes my stomach a little nauseated...
It was challenging to not lose it. The nurses kept trying to entice me to eat and kept asking if I wanted crackers or a starbucks run. I just wanted to go home. It was such a mental battle. Good thing my mentals are used to battling.
Oh, and forget any meaningful sleep while in hospital, so throw that onto the med zombie. So when I got home, I crashed for a couple of days, and kept waking up thinking I was still attached to wires. Then yesterday I had to take Sasha to her follow up at Standford, where I learned we will be upping the dosage of her new useless meds by 50%, in the hopes that somehow THIS time they will work. That was so worth the all night migraine I had. *eye roll*
So anyway, the DHE infusions I endured at the hospital for 5 days can take up to a month to kick in. But already I feel different. More functional to be sure. It's hard to know how to take life at this point since I tend to overdo things the minute I am able. I had to take Sasha to Stanford, so that one's on the universe. It'll be interesting to see how things progress from here. I'm hoping for no more migraines obviously. I'll be keeping up with the physical therapy for now, and waiting for the infusions to kick in. Thankfully it was a one and done situation, where I don't EVER have to go back to the hospital for that. I swear I will never take peeing for granted again.
Thursday, April 23, 2015
Two Year Cocktail
Stranger things have happened I guess. The last time I went four days in a row without rescue meds was November of last year. Today is pushing six days sans the meds, which might actually be a two year record. What feels different about this stretch is that I'm still tired. I still don't feel good, and I guess that's what gives me hope. Maybe that's what's even prolonging it. Typically I start to feel good, see the madness around me and do what I can to overcome it in any degree, and then sink again into migraine. So maybe Topamax plus Melatonin is my magic cocktail, for now anyway.
Cured I am not yet but if you can break that cycle and give the brain a chance to stop going crazy, it can only be a good thing. And I count it a victory for sure, even tho nothing's been planted in the garden and I don't feel six days worth of productive in a typical sense. Six days doesn't erase a life long battle with migraine, nor sixteen years of chronic insano migraine brain. But interestingly enough, it came just in time to deal with a few things.
One of those things is early hormone week. Like, really early hormone week. Is that a side-effect of Melatonin? I'll have to do some more research. I don't have all the things memorized on that shnazz yet. Still, I haven't run into the typical hormone migraine, and that's unheard of. Absolutely unheard of except for one other time in the past sixteen years so, bonus. Another fun thing I've been dealing with is Sasha's stomach. A week into doubling her new med, her migraine has gone mostly abdominal. Well, it starts abdominal and then moves into her head for the evening. I'm going to call it progress because at least we're messing with her. And that means Sasha and I have been trying to avoid her rescue meds all day with ice, essential oils, baths, and general distraction. That takes effort, lemme tell you. That goes on top of the constant feeding, of course.
But probably the most eye-rolling thing to deal with this week is the girls' dad's baby-momma. She got it in her head to be upset with me and I'm not really sure why. I think it has mainly to do with the fact that she is followed around by a life time of bad decisions which include the fact that my worst decision (steven) is her best one, and he still owes me money. So out of nowhere she started facebook messaging me. (: It's mostly hilarious, but also mildly distracting from my real life. I emailed her third baby daddy (steven) and asked him to take care of it, and to remind her that I've paid off his credit card twice, and put money into his bank account a few time. *huge eye roll* But who's keeping score? Not her apparently.
So I guess all told, not a bad week? I mean, yes more (forever and ever) asinine school emails about food in the class, and no, we're not all cured from migraine and yes we all still eat like the freaks we are, but it could be and has been worse. Did I forget to mention the birthday food again with the late notice change of plans? Not even worth it. I am however playing guitar this week. Always worth it.
Cured I am not yet but if you can break that cycle and give the brain a chance to stop going crazy, it can only be a good thing. And I count it a victory for sure, even tho nothing's been planted in the garden and I don't feel six days worth of productive in a typical sense. Six days doesn't erase a life long battle with migraine, nor sixteen years of chronic insano migraine brain. But interestingly enough, it came just in time to deal with a few things.
One of those things is early hormone week. Like, really early hormone week. Is that a side-effect of Melatonin? I'll have to do some more research. I don't have all the things memorized on that shnazz yet. Still, I haven't run into the typical hormone migraine, and that's unheard of. Absolutely unheard of except for one other time in the past sixteen years so, bonus. Another fun thing I've been dealing with is Sasha's stomach. A week into doubling her new med, her migraine has gone mostly abdominal. Well, it starts abdominal and then moves into her head for the evening. I'm going to call it progress because at least we're messing with her. And that means Sasha and I have been trying to avoid her rescue meds all day with ice, essential oils, baths, and general distraction. That takes effort, lemme tell you. That goes on top of the constant feeding, of course.
But probably the most eye-rolling thing to deal with this week is the girls' dad's baby-momma. She got it in her head to be upset with me and I'm not really sure why. I think it has mainly to do with the fact that she is followed around by a life time of bad decisions which include the fact that my worst decision (steven) is her best one, and he still owes me money. So out of nowhere she started facebook messaging me. (: It's mostly hilarious, but also mildly distracting from my real life. I emailed her third baby daddy (steven) and asked him to take care of it, and to remind her that I've paid off his credit card twice, and put money into his bank account a few time. *huge eye roll* But who's keeping score? Not her apparently.
So I guess all told, not a bad week? I mean, yes more (forever and ever) asinine school emails about food in the class, and no, we're not all cured from migraine and yes we all still eat like the freaks we are, but it could be and has been worse. Did I forget to mention the birthday food again with the late notice change of plans? Not even worth it. I am however playing guitar this week. Always worth it.
Wednesday, April 15, 2015
Bitter, Angry, Exhausted
Imagine with me there's a miracle cure for migraine, but there are only 5 or 6 places in the U.S. that offer this treatment. Now imagine that one of the places is my ag town. (random, but stay with me.) Now imagine that my insurance actually approves this treatment and they want me to start Monday. Monday, like in less than a week Monday, but I can't because it takes a 5-day stint in the hospital for this treatment to work.
Clinic Lady: "You've been approved for treatment, can you start Monday?"
Me: "...Uh...wow, awesome, but I can't do this until June." *silently weeping*
CL: "Can you tell me why?"
Me: (oh my god) *deep sigh* "I'm a single mom and both my little kids have migraines and food allergies, and they're not even normal food allergies so no one wants to take care of them or can even feed them. My oldest daughter's migraines are under control with meds but my youngest daughter just went to Stanford because hers are not and we're doubling her new meds tonight and hoping nothing crazy happens and my mom who we live with is a teacher and no one gets out of school until June..." *takes breath*
CL: "Oh wow, I'm sorry you have to deal with that. Ok well just let us know because approval only takes a couple of days."
Me: *blank stare*
So this "miracle cure" is a thing where they stick you in the hospital and shoot you up with stuff three times a day for 5 days, and it has a stupid high success rate for at the very least, VASTLY IMPROVING YOUR STUPID MIGRAINE LIFE. So that you don't have a migraine every damn single day. So you can be a functional human being. And what were the chances that a headache doctor would come to town? But one did, and she is literally down the street and around the corner from my effing house.
And I won't be getting treatment on Monday. And I won't be getting treatment as soon as humanly possible in June because family stuff. Good, great, amazing stuff, but oh my god, haven't I been fucking tortured long enough? I'll just be waiting, exhausted and in pain, and I'm having a bit of a hard time with that. I do not know how to have a good attitude about this.
And having that actual conversation yesterday is killing me, because it's planting season, I have dirt and seeds, and a kids who can't eat anything who could really REALLY use some variety in her diet, and not an ounce of energy to make boxes and plant anything or even fertilize or haul grey water to the fruit trees we already have.
Really? Since when was Joss Whedon put in charge of the screenplay?
Clinic Lady: "You've been approved for treatment, can you start Monday?"
Me: "...Uh...wow, awesome, but I can't do this until June." *silently weeping*
CL: "Can you tell me why?"
Me: (oh my god) *deep sigh* "I'm a single mom and both my little kids have migraines and food allergies, and they're not even normal food allergies so no one wants to take care of them or can even feed them. My oldest daughter's migraines are under control with meds but my youngest daughter just went to Stanford because hers are not and we're doubling her new meds tonight and hoping nothing crazy happens and my mom who we live with is a teacher and no one gets out of school until June..." *takes breath*
CL: "Oh wow, I'm sorry you have to deal with that. Ok well just let us know because approval only takes a couple of days."
Me: *blank stare*
So this "miracle cure" is a thing where they stick you in the hospital and shoot you up with stuff three times a day for 5 days, and it has a stupid high success rate for at the very least, VASTLY IMPROVING YOUR STUPID MIGRAINE LIFE. So that you don't have a migraine every damn single day. So you can be a functional human being. And what were the chances that a headache doctor would come to town? But one did, and she is literally down the street and around the corner from my effing house.
And I won't be getting treatment on Monday. And I won't be getting treatment as soon as humanly possible in June because family stuff. Good, great, amazing stuff, but oh my god, haven't I been fucking tortured long enough? I'll just be waiting, exhausted and in pain, and I'm having a bit of a hard time with that. I do not know how to have a good attitude about this.
And having that actual conversation yesterday is killing me, because it's planting season, I have dirt and seeds, and a kids who can't eat anything who could really REALLY use some variety in her diet, and not an ounce of energy to make boxes and plant anything or even fertilize or haul grey water to the fruit trees we already have.
Really? Since when was Joss Whedon put in charge of the screenplay?
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