Yikes. I haven't been on in a few years. Again, there's reasons for that. My husband, Little Hawk, (AKA Husbandface) has been a handful with the issues he had before, and now, some new ones. What's new? Well, he had a heart attack. Don't freak out, he's alive, but it was touch and go for a few months. He's now in what's known as a Persistent Vegetative State. This means that he isn't able to do much communicating with us, is unable to move himself around in bed or out of it, and is not able to safely eat or drink, he most likely would choke.
That's a lot to deal with. And I could have let them pull the plug on him, but I didn't because A), I love him and I couldn't bear to let him go, and B), he told me that in such a situation, he would want to be kept alive no matter what. Those were his exact words.
I also could have put him in a skilled nursing home, but I didn't seriously consider it, for a number of reasons. The main reason was that he has a horror of ending up in a nursing home, and I promised him a long time ago that I would never let him go to one.
So, we were in the hospital. At first, he was totally unresponsive. Only breathing because he was hooked into a breathing machine. Intubated. Kept alive by a feeding tube down his nose. And while he was like this, the doctors told me that he was brain dead. That he would never recover. I was numb, unable to keep a coherent thought together. I told them that I wasn't pulling the plug, that I would take him home and care for him, for the rest of his life. How long would he live? Nobody knew.
However, he slowly improved. One day he started fighting the breathing machine, trying to breathe on his own. So they turned it off, to see what would happen. They waited until I left to do that, I would just like to point out. And he breathed on his own. They extubated him, and he kept breathing. Suddenly his survival factor jumped way up. Now there was no "pulling the plug," he was fighting to live on his own. He underwent surgery to have a permenent feeding tube placed, and he was, eventually, moved out of the ICU onto a different floor. He had spent a MONTH in the ICU.
He continued to improve. He opened his eyes, winced in pain when he was pinched, and once, so quietly, told me, "I love you."
Eventually they let me bring him home. Now I have a caregiving team that helps me turn him every two hours, to prevent bed sores. We wash him and fill his feeding pump and keep him comfortable in bed. We use a hoist to move him to a wheelchair so we can watch movies or take him for a walk. At night, I get up every two hours to keep turning him in bed.
And he keeps improving! He is seeing a Speech Therapist, who has guided him from occasional nods and shakes of his head to verbally answering questions. He tells me he loves me every day. He calls me his Little Bird again.
This is hard work. I won't pretend it isn't. I am his legal guardian now. I have to do our finances and comply with a nearly draconian set of legal regulations regarding care and finances. There are court appearances to prove that I am not misusing or squandering his money. It's scary and tough.
But it's 100% worth it to know that the love of my life is alive and getting the best care I can give. I would give up a hundred freedoms and every penny we have if it was needed.
Now I'm all worn out from typing all this up. Crafting reports tomorrow!
Showing posts with label mood. Show all posts
Showing posts with label mood. Show all posts
Monday, September 5, 2016
Monday, March 25, 2013
Mood-Setting Monday
This Monday, I'm thinking about rain. The smell of rain is renewing, refreshing, soothing, and healing. The air smells clean and moist, with undertones of green, growing life, and rich, damp earth. Having always associated rain with renewal and growth, I have come to cherish listening to rain drum on my roof, flinging open the windows to fill the house with freshly washed air, and even taking long, soaking wet walks without an umbrella. Luckily for me, I live in Washington, which averages over 27 inches of rain annually. This is an average, because my city gets over 50 inches a year, and the peninsula can get over a hundred!
Granted, not all of my experiences in the rain have been amazing. I remember as a child, spending the autumn frantically hauling and stacking loads of firewood to keep our cozy little farmhouse, well, cozy. Usually half of that work was in the rain, and we would be moving loads of wood all day, with our leather gloves becoming sodden and muddy,the wood seeming to double in weight from the waterlogged moss still clinging to the rough bark, and the frantic ants, centipedes and spiders frantically seeking shelter from the wet. We spent the days soggy, cold, grumpy, and in terror that an earwig or spider would run up our sleeve. (They never did)
At the same times in my life, however, rain has been a comfort, a blessing, a release. I remember the comforting rattle of rain on the roof, lulling me to sleep. Then, there's long walks through the woods, listening to the patter of rain on leaves, watching for frogs and salamanders and newts to play with. I remember building little dams, bridges, and making leaf boats for the hundreds of little rills that would spring up on rainy days. For those of you who didn't amuse themselves by reading the dictionary cover to cover, a rill is a very tiny seasonal stream.
I've never really used an umbrella, mostly because the summer after I watched Mary Poppins, I jumped off our roof several times, smashing beyond repair a succession of umbrellas until my dad threw up his hands in disgust and swore that he would never buy an umbrella again. Given that this was twenty years ago, he may have changed his mind, but I not only still wistfully look to the sky and wonder how to float off into it, I walk in the rain with no protection from it's sodden charms. While I might not ever use umbrellas, I do like them, especially this cool black steampunk umbrella, this awesome retro umbrella, and this amazing wrought iron decorated umbrella, on Etsy.
While I love being in and listening to the rain, I can certainly understand why lots of people don't see the same attraction in being either trapped inside, or soaking wet and cold. Well, for the rest of you, here's a cute, fluffy little cloud that nobody could object to. For we rain-lovers, here's a sampling of amazing rain images and ideas that I yanked from my Pinterest.
Granted, not all of my experiences in the rain have been amazing. I remember as a child, spending the autumn frantically hauling and stacking loads of firewood to keep our cozy little farmhouse, well, cozy. Usually half of that work was in the rain, and we would be moving loads of wood all day, with our leather gloves becoming sodden and muddy,the wood seeming to double in weight from the waterlogged moss still clinging to the rough bark, and the frantic ants, centipedes and spiders frantically seeking shelter from the wet. We spent the days soggy, cold, grumpy, and in terror that an earwig or spider would run up our sleeve. (They never did)
At the same times in my life, however, rain has been a comfort, a blessing, a release. I remember the comforting rattle of rain on the roof, lulling me to sleep. Then, there's long walks through the woods, listening to the patter of rain on leaves, watching for frogs and salamanders and newts to play with. I remember building little dams, bridges, and making leaf boats for the hundreds of little rills that would spring up on rainy days. For those of you who didn't amuse themselves by reading the dictionary cover to cover, a rill is a very tiny seasonal stream.
I've never really used an umbrella, mostly because the summer after I watched Mary Poppins, I jumped off our roof several times, smashing beyond repair a succession of umbrellas until my dad threw up his hands in disgust and swore that he would never buy an umbrella again. Given that this was twenty years ago, he may have changed his mind, but I not only still wistfully look to the sky and wonder how to float off into it, I walk in the rain with no protection from it's sodden charms. While I might not ever use umbrellas, I do like them, especially this cool black steampunk umbrella, this awesome retro umbrella, and this amazing wrought iron decorated umbrella, on Etsy.
While I love being in and listening to the rain, I can certainly understand why lots of people don't see the same attraction in being either trapped inside, or soaking wet and cold. Well, for the rest of you, here's a cute, fluffy little cloud that nobody could object to. For we rain-lovers, here's a sampling of amazing rain images and ideas that I yanked from my Pinterest.
Well, enjoy the rain, let it cleanse your spirit and leave you refreshed. Also, I'd love to hear your stories about rain, rain-related accessories and crafts, ect. Please comment and join the conversation!
Friday, January 18, 2013
In The Saddle
Well, I'm working on getting my Etsy shop's inventory built up before our big move. We are only moving across town, but as luck would have it, the only day we can move is ALSO the ONLY day that the doctor and his surgical team can meet to do the pre-surgery checklist. Augh. My life.
Anyway, I'm hard at work. My workspace currently looks like this:
Anyway, I'm hard at work. My workspace currently looks like this:
But in the new house, I'll get a whole room for my studio and office. Yay! I have a billionty other things I have to do as well, its overwhelming. For right now, however, I'm going to focus on having a cup of tea, and doing a bit of beading, and take control of an itty bitty corner of the world while Hawk is asleep.
See you soon! *waves*
Wednesday, January 16, 2013
BACK!
OMG GUYS I"M BAAACK
Whew. Its been two years, hasn't it? I apologize about that. It's been a hell of a year, with Little Hawk getting really, really really sick, me having a mental breakdown and dealing with depression, us moving, and now moving again, and a lot of shit. Let me catch you up.
After I last posted, I had to quit school to take care of Little Hawk, who is known as Husbandface to my Ravelry friends. *waves* His Post Concussive Disorder never actually got better. It got so, so much worse.
It got so bad that we moved to Olympia, in order to be closer to his doctors. The doc we got, ended up managing to control the spasms, (thank you, whichever deity cares) but the mental stuff got worse. Now, he has Amnestic episodes. He will just randomly shut off, and be, mentally, in another time period in his life. Sometimes he is a child, or even a baby. Sometimes he's a few years ago. Sometimes he knows me, sometimes he thinks I'm his mom, and sometimes, he doesn't know me, and he thinks I've kidnapped him. That can be dangerous.
While this was going on, I was working full time, graveyard shift. Which meant he was alone at night, and, as I was sleeping during the day, also kind of alone. And bad things would happen. He would suddenly not recognize our house and go rolling off into the street, or have a panic attack, (which would trigger a spasm attack) or decide he was dreaming, and go to extreme lengths to wake himself up, like trying to cut off a finger with scissors or something. Awesome, I know.
So we went through a series of part-time caregivers, who would come in for a few hours to keep an eye on him so I wouldn't have to sleep on a folded blanket in front of the door. They were..less than stellar. There was the guy who wore so much Axe that it set off Hawk's asthma, and called in sick three days out of four. There was the girl who would nap on the couch and text. There was the older man, who was very nice, but always reeked of cigarette smoke, which I am severely allergic to, and he let Hawk run off in a panic while he was folding laundry with headphones on. Finally, we appealed to Manbear, who has not only had lots of experience with caregiving, but has a para-education degree AND a psych degree, AND is one of Hawk's oldest and dearest friend. Perfect. He has been a LIFESAVER.
In the meantime, Hawk has had lots more trouble with falling, in one case nearly fracturing his hip and ending up in the hospital for 30 days. During that time, I had to quit working, partially because I needed to spend more time with Hawk, and partially because my employer was being a dick about me spending more time with Hawk. This bird doesn't lie down and let employers walk over her.
I got another, awesomer job, and we sort of stayed in stasis, with Hawk not getting better or worse, Manbear, his awesome wife Foxy, and our other friend Bean, tried to hold down the fort at home, since I was working twelves. BECAUSE I'M CRAZY.
I know what you guys are thinking. First a year of working full time and going to school full time, then a year of working part time, taking care of Hawk, and going to school full time, then a year and a half of working full time and taking care of Hawk full time (with help). Youre thinking, "This bird is CRAZY. She's going to have a mental breakdown. The only question is WHEN."
And you're absolutely right. I started struggling with depression this summer, started seeing a therapist in November, and despite that, had a complete breakdown, complete with suicide attempt, in early December. It sucked. Don't try to kill yourself, guys. People take away your knitting and won't let you make your own sandwiches.
Anyway, I got better medicated, and started feeling better, and then Hawk had a bad fall, and two weeks later ended up BACK in the hospital with pneumonia (Glorious. Just what we needed for Christmas) They had said Hawk needed to see a neurosurgeon after the fall, because they had seen something weird on his MRI, (lovely) and so we trekked off to Harborview, two weeks ago.
And holy shit. He has a TUMOR. In his SPINE.
It's a bone tumor that is pressing against his spinal cord, just a hair from cutting it completely. They have to operate right away. They also have to extend the spinal fusion he already has, which means MAJOR surgery, and at least a year's recovery. Hawk is postponing it until after the Super Bowl, and in the meantime we have to move closer to the hospital, in case he has complications, and I have to quit my job, because there is no way I will be able to work and take care of him. I'd been thinking about quitting anyway, because I had come to the realization that I can't work and take care of Hawk at the same time. Because I'll have a mental breakdown. And that's not good.
So what I'm saying, if I'm saying anything at all, is that I MISSED YOU. And my life is INSANE. And I am quitting my job to take care of my husband, and plan to turn my beading and stuff into a full time business.
Whew. Its been two years, hasn't it? I apologize about that. It's been a hell of a year, with Little Hawk getting really, really really sick, me having a mental breakdown and dealing with depression, us moving, and now moving again, and a lot of shit. Let me catch you up.
After I last posted, I had to quit school to take care of Little Hawk, who is known as Husbandface to my Ravelry friends. *waves* His Post Concussive Disorder never actually got better. It got so, so much worse.
It got so bad that we moved to Olympia, in order to be closer to his doctors. The doc we got, ended up managing to control the spasms, (thank you, whichever deity cares) but the mental stuff got worse. Now, he has Amnestic episodes. He will just randomly shut off, and be, mentally, in another time period in his life. Sometimes he is a child, or even a baby. Sometimes he's a few years ago. Sometimes he knows me, sometimes he thinks I'm his mom, and sometimes, he doesn't know me, and he thinks I've kidnapped him. That can be dangerous.
While this was going on, I was working full time, graveyard shift. Which meant he was alone at night, and, as I was sleeping during the day, also kind of alone. And bad things would happen. He would suddenly not recognize our house and go rolling off into the street, or have a panic attack, (which would trigger a spasm attack) or decide he was dreaming, and go to extreme lengths to wake himself up, like trying to cut off a finger with scissors or something. Awesome, I know.
So we went through a series of part-time caregivers, who would come in for a few hours to keep an eye on him so I wouldn't have to sleep on a folded blanket in front of the door. They were..less than stellar. There was the guy who wore so much Axe that it set off Hawk's asthma, and called in sick three days out of four. There was the girl who would nap on the couch and text. There was the older man, who was very nice, but always reeked of cigarette smoke, which I am severely allergic to, and he let Hawk run off in a panic while he was folding laundry with headphones on. Finally, we appealed to Manbear, who has not only had lots of experience with caregiving, but has a para-education degree AND a psych degree, AND is one of Hawk's oldest and dearest friend. Perfect. He has been a LIFESAVER.
In the meantime, Hawk has had lots more trouble with falling, in one case nearly fracturing his hip and ending up in the hospital for 30 days. During that time, I had to quit working, partially because I needed to spend more time with Hawk, and partially because my employer was being a dick about me spending more time with Hawk. This bird doesn't lie down and let employers walk over her.
I got another, awesomer job, and we sort of stayed in stasis, with Hawk not getting better or worse, Manbear, his awesome wife Foxy, and our other friend Bean, tried to hold down the fort at home, since I was working twelves. BECAUSE I'M CRAZY.
I know what you guys are thinking. First a year of working full time and going to school full time, then a year of working part time, taking care of Hawk, and going to school full time, then a year and a half of working full time and taking care of Hawk full time (with help). Youre thinking, "This bird is CRAZY. She's going to have a mental breakdown. The only question is WHEN."
And you're absolutely right. I started struggling with depression this summer, started seeing a therapist in November, and despite that, had a complete breakdown, complete with suicide attempt, in early December. It sucked. Don't try to kill yourself, guys. People take away your knitting and won't let you make your own sandwiches.
Anyway, I got better medicated, and started feeling better, and then Hawk had a bad fall, and two weeks later ended up BACK in the hospital with pneumonia (Glorious. Just what we needed for Christmas) They had said Hawk needed to see a neurosurgeon after the fall, because they had seen something weird on his MRI, (lovely) and so we trekked off to Harborview, two weeks ago.
And holy shit. He has a TUMOR. In his SPINE.
It's a bone tumor that is pressing against his spinal cord, just a hair from cutting it completely. They have to operate right away. They also have to extend the spinal fusion he already has, which means MAJOR surgery, and at least a year's recovery. Hawk is postponing it until after the Super Bowl, and in the meantime we have to move closer to the hospital, in case he has complications, and I have to quit my job, because there is no way I will be able to work and take care of him. I'd been thinking about quitting anyway, because I had come to the realization that I can't work and take care of Hawk at the same time. Because I'll have a mental breakdown. And that's not good.
So what I'm saying, if I'm saying anything at all, is that I MISSED YOU. And my life is INSANE. And I am quitting my job to take care of my husband, and plan to turn my beading and stuff into a full time business.
Monday, August 1, 2011
SOCK SUMMIT BABY YEAH!
I managed to make it to one day of this year's Sock summit , and it was absolutely amazing.
The plan was this. Little Hawk would drop me off at the Portland Convention Center, I would spend the day squishing yarn and meeting my online friends, that evening I would go to a party and meet local members of a Ravelry group I am a part of, then he would come grab me and we would go home the next morning.
Well, the best laid plans and all that....Little Hawk wasn't up to driving, so I dropped him off at his brother's, (heretoafter to be called the House Of Irish) and borrowed his brother's GPS to help prevent me from having a panic attack and ensuing aneurysm.
I still got lost, which is remarkable considering that it was freeway all the way and only a half hour from House of Irish to the convention center. I only really had trouble when I exited the freeway, less than a block from the convention center, and kept panicking and turning left instead of right. The poor GPS kept saying..."recalculating route, please make a U turn," with increasing levels of irritation.
I did make it eventually, made sure to park in an ALL DAY lot, then slogged two blocks in the hot, hot, hot sun to the convention center....to discover I had left my wallet in the car. Back I go, and then the money I had been saving in my Paypal account just for this hadn't transferred yet. So I call Little Hawk and he transferred some money over for me.
Remember, I was on a VERY tight budget. I had promised to buy some stash yarn from a friend there, OhCamels, and we were supposed to do the hand-off that day. I had her 40 dollars, and fifteen of my own to spend. I had more, but I had to husband it against parking fees and dinner with my friends. When I finally met up with her, (after wandering the marketplace and being reduced to near tears by the wondrous sights,) we had a bit of a misunderstanding. She said that she hadn't brought the yarn to her booth, and I could pay her later. I thought she hadn't brought it AT ALL and that I could now spend $55 instead of $15.
Somehow she convinced me to buy three skeins of AMAZING sock yarn for a mystery shawl knit-along that our group is doing. I'm not sure how that happened, but I'm still petting the yarn and cooing over it. Beware, all of you. Abstract Fiber is not only amazingly soft and beautiful, but everyone who works there is a highly skilled Yarn Enabler. You will buy ALL THE THINGS.
Afterwards, she draped me in one of her loveliest shawls and sent me off to wander with some more awesome ladies, Kellbelle and Mykind. There was much yarn squishing, and I was introduced to the concept of "pet" yarn. This is yarn that one will never knit, perhaps because it is in a color that doesn't flatter you, or because knitting mohair is something you abhor, but yarn that you must own anyway. Yarn as a pet. I am behind this idea 100%.
When the promised $40 yarn showed up that evening, though, I had some 'splaining to do. Luckily OhCamels is awesome and nonjudgmental about my skills of comprehension.
I met so many of the wonderful people I know online. I squeaked and flailed at the poor Yarn Harlot until she relented and signed my sketchbook. OhCamels was beautiful and vibrant and somehow talked me into buying half the yarn at her stall. AdamAntonym was charming and dapper and delectably handsome. Didisaurus showed up to the meet-up of my Ravelry group in a dinosaur costume, and Gonzopants, after being kidnapped by pirates, brought one of them to the party with her. He was very charming and a good sport about being flirted with and groped by a group of tipsy knitters. The party, though, didn't really get started until wheniripyouopen showed up with AN ENTIRE SUITCASE OF WOLLMEISE and started selling it, right there in the bar. AND I WAS OUT OF MONEY.
My only regret, besides not having any money, was forgetting my camera. I had to beg a friend to snap me and our weasel mascot with her iphone and email me the picture. Here you are.
In other news, Miss Manners chides an irked lady for thinking that knitting at a recital means you aren't paying attention.
The plan was this. Little Hawk would drop me off at the Portland Convention Center, I would spend the day squishing yarn and meeting my online friends, that evening I would go to a party and meet local members of a Ravelry group I am a part of, then he would come grab me and we would go home the next morning.
Well, the best laid plans and all that....Little Hawk wasn't up to driving, so I dropped him off at his brother's, (heretoafter to be called the House Of Irish) and borrowed his brother's GPS to help prevent me from having a panic attack and ensuing aneurysm.
I still got lost, which is remarkable considering that it was freeway all the way and only a half hour from House of Irish to the convention center. I only really had trouble when I exited the freeway, less than a block from the convention center, and kept panicking and turning left instead of right. The poor GPS kept saying..."recalculating route, please make a U turn," with increasing levels of irritation.
I did make it eventually, made sure to park in an ALL DAY lot, then slogged two blocks in the hot, hot, hot sun to the convention center....to discover I had left my wallet in the car. Back I go, and then the money I had been saving in my Paypal account just for this hadn't transferred yet. So I call Little Hawk and he transferred some money over for me.
Remember, I was on a VERY tight budget. I had promised to buy some stash yarn from a friend there, OhCamels, and we were supposed to do the hand-off that day. I had her 40 dollars, and fifteen of my own to spend. I had more, but I had to husband it against parking fees and dinner with my friends. When I finally met up with her, (after wandering the marketplace and being reduced to near tears by the wondrous sights,) we had a bit of a misunderstanding. She said that she hadn't brought the yarn to her booth, and I could pay her later. I thought she hadn't brought it AT ALL and that I could now spend $55 instead of $15.
Somehow she convinced me to buy three skeins of AMAZING sock yarn for a mystery shawl knit-along that our group is doing. I'm not sure how that happened, but I'm still petting the yarn and cooing over it. Beware, all of you. Abstract Fiber is not only amazingly soft and beautiful, but everyone who works there is a highly skilled Yarn Enabler. You will buy ALL THE THINGS.
Afterwards, she draped me in one of her loveliest shawls and sent me off to wander with some more awesome ladies, Kellbelle and Mykind. There was much yarn squishing, and I was introduced to the concept of "pet" yarn. This is yarn that one will never knit, perhaps because it is in a color that doesn't flatter you, or because knitting mohair is something you abhor, but yarn that you must own anyway. Yarn as a pet. I am behind this idea 100%.
When the promised $40 yarn showed up that evening, though, I had some 'splaining to do. Luckily OhCamels is awesome and nonjudgmental about my skills of comprehension.
I met so many of the wonderful people I know online. I squeaked and flailed at the poor Yarn Harlot until she relented and signed my sketchbook. OhCamels was beautiful and vibrant and somehow talked me into buying half the yarn at her stall. AdamAntonym was charming and dapper and delectably handsome. Didisaurus showed up to the meet-up of my Ravelry group in a dinosaur costume, and Gonzopants, after being kidnapped by pirates, brought one of them to the party with her. He was very charming and a good sport about being flirted with and groped by a group of tipsy knitters. The party, though, didn't really get started until wheniripyouopen showed up with AN ENTIRE SUITCASE OF WOLLMEISE and started selling it, right there in the bar. AND I WAS OUT OF MONEY.
My only regret, besides not having any money, was forgetting my camera. I had to beg a friend to snap me and our weasel mascot with her iphone and email me the picture. Here you are.
Please to enjoy my hickey and double chin. *sigh*
In other news, Miss Manners chides an irked lady for thinking that knitting at a recital means you aren't paying attention.
Sunday, July 10, 2011
Scared and Uncertain
Little Hawk is getting worse.
When I first met him, four years ago this fall, he had occasional spasms in his legs. Over that fall and winter they got worse and involved his whole legs up to the hips. Then they started involving his arms that summer. The winter and the spring of our marriage, his whole body would thrash uncontrollably during an attack. This winter, during severe attacks, his diaphragm would freeze up and he wouldn't be able to breathe during contractions.
Now his lungs are spasming and he is aspirating saliva and sometimes vomit during the really bad attacks. It was bad enough watching him spasm.
It was bad enough having to pin him down so he wouldn't punch himself or claw his face when he was spasming. It was bad enough when he was screaming in pain and I was unable to help him. But now, when he is spasming, thrashing around, coughing and gagging and gasping and turning purple, vomiting or coughing up white or yellow foam- I can't help him, other than wiping his face with a towel, holding him on his side so he doesn't aspirate, trying to coach him to stop hyperventilating.
I feel like he is dying by inches and there is nothing I can do. I'm so afraid that he is going to get worse and worse or that he's going to do this while I'm at the grocery store and die while I'm squishing avacados and deciding on bread. Every time I leave the house I'm afraid. When I'm in bed and he gets up to go to the bathroom, I'm afraid. If he's napping and I can't hear him snoring, I have to go in and check on him every few minutes to allay my fear. I wake up every half hour at night to check on him. I don't do it on purpose, I just can't sleep for worry.
What happens when I snap? So far I've been remarkably resilient. I have a phobia of spit and phlegm. When teenage boys spit on the sidewalk I twitch and make a detour. However, I've managed to hold him while he vomits and coughs foam all over my shirt, arms, and even my face. I've managed to get up and do whatever needs to be done, even if I haven't slept in three days and I want to curl up in the corner and rock and cry and hold myself. But what if tomorrow I can't?
I think that's what I'm afraid of the most. Little Hawk depends on me to be his rock. He's said so before, many times. I can't give myself the luxury of having a mental breakdown, because he needs me.
On the other hand, it's nice to be needed, eh?
I work hard to try and keep our spirits up. I give myself time to cry. I do a LOT of knitting, especially knitting things for people I love. I cuddle with Little Hawk, or with my kitten, who has taken it upon herself to comfort me by gluing herself to my lap. I putter around in my garden. I listen to audiobooks.
If I could just be certain that Little Hawk was going to be ok, I could cope. I love him so very, very much, and seeing him go through this pain is what hurts me the most. He doesn't deserve any of this, He's the kindest, sweetest, most thoughtful man I've ever met. Honestly, it's a privilege to take care of him. He's that amazing. That's why watching him suffer hurts so much.
When I first met him, four years ago this fall, he had occasional spasms in his legs. Over that fall and winter they got worse and involved his whole legs up to the hips. Then they started involving his arms that summer. The winter and the spring of our marriage, his whole body would thrash uncontrollably during an attack. This winter, during severe attacks, his diaphragm would freeze up and he wouldn't be able to breathe during contractions.
Now his lungs are spasming and he is aspirating saliva and sometimes vomit during the really bad attacks. It was bad enough watching him spasm.
It was bad enough having to pin him down so he wouldn't punch himself or claw his face when he was spasming. It was bad enough when he was screaming in pain and I was unable to help him. But now, when he is spasming, thrashing around, coughing and gagging and gasping and turning purple, vomiting or coughing up white or yellow foam- I can't help him, other than wiping his face with a towel, holding him on his side so he doesn't aspirate, trying to coach him to stop hyperventilating.
I feel like he is dying by inches and there is nothing I can do. I'm so afraid that he is going to get worse and worse or that he's going to do this while I'm at the grocery store and die while I'm squishing avacados and deciding on bread. Every time I leave the house I'm afraid. When I'm in bed and he gets up to go to the bathroom, I'm afraid. If he's napping and I can't hear him snoring, I have to go in and check on him every few minutes to allay my fear. I wake up every half hour at night to check on him. I don't do it on purpose, I just can't sleep for worry.
What happens when I snap? So far I've been remarkably resilient. I have a phobia of spit and phlegm. When teenage boys spit on the sidewalk I twitch and make a detour. However, I've managed to hold him while he vomits and coughs foam all over my shirt, arms, and even my face. I've managed to get up and do whatever needs to be done, even if I haven't slept in three days and I want to curl up in the corner and rock and cry and hold myself. But what if tomorrow I can't?
I think that's what I'm afraid of the most. Little Hawk depends on me to be his rock. He's said so before, many times. I can't give myself the luxury of having a mental breakdown, because he needs me.
On the other hand, it's nice to be needed, eh?
I work hard to try and keep our spirits up. I give myself time to cry. I do a LOT of knitting, especially knitting things for people I love. I cuddle with Little Hawk, or with my kitten, who has taken it upon herself to comfort me by gluing herself to my lap. I putter around in my garden. I listen to audiobooks.
If I could just be certain that Little Hawk was going to be ok, I could cope. I love him so very, very much, and seeing him go through this pain is what hurts me the most. He doesn't deserve any of this, He's the kindest, sweetest, most thoughtful man I've ever met. Honestly, it's a privilege to take care of him. He's that amazing. That's why watching him suffer hurts so much.
Friday, July 8, 2011
I Have Awesome Pants
About a week ago, Kitten gave me a pair of really awesome plaid pants. They weren't terribly blinding, a nice beige and red combo, and it even look like they fit. (I've been comfort eating. Don't look at me like that.)
Anyway, I decided to wear them yesterday, since the respite nurse was coming over and I was going to Knit Night. Anyway, I put on the pants, a relatively nice shirt, and my sunglasses, drove to pick up Kitten- and as I stepped out of the car, I was suddenly awash with absolute sureness in the fact that I was Cool.
I was Super Cool and Awesome and I could feel the adoring glances of everyone in Safeway. I refused to let my slightly ragged cardigan with the hole in the elbow taint my glow of Cool.
I basked in my coolness for the rest of the afternoon, and it was very fun, especially when I got a free smoothie sample at Starbucks and one of the ladies at Knit Night brought cookies. It was a really, really nice day, and I'm going to do my best to cultivate that happiness for a few days more.
Anyway, I decided to wear them yesterday, since the respite nurse was coming over and I was going to Knit Night. Anyway, I put on the pants, a relatively nice shirt, and my sunglasses, drove to pick up Kitten- and as I stepped out of the car, I was suddenly awash with absolute sureness in the fact that I was Cool.
I was Super Cool and Awesome and I could feel the adoring glances of everyone in Safeway. I refused to let my slightly ragged cardigan with the hole in the elbow taint my glow of Cool.
I basked in my coolness for the rest of the afternoon, and it was very fun, especially when I got a free smoothie sample at Starbucks and one of the ladies at Knit Night brought cookies. It was a really, really nice day, and I'm going to do my best to cultivate that happiness for a few days more.
Friday, June 24, 2011
Thank God For EMTs
So here I am, eating stale Safeway cheesecake that tastes like socks, drinking milk and wishing it was wine, and trying to decide how on earth I am going to get ground in vomit out of the carpet.
Need me to back up? OK. I deleted a really long, detailed account of how terrible my day was. It started at Five AM and it didn't end until nearly midnight, but it ended well and that's the important thing.
The short version is that Little Hawk had a pretty bad spasm day today, and it was made worse by the fact that he is getting frustrated with the sedation his meds cause and delayed in taking them until it was too late to do more than keep them from being uncontrollable, rather than making them go away. He was resting on the couch in between attacks, and I turned my back for a minute to get him his meds, and his spasms caused him to fall off the couch and inhale a big lungful of carpet dust.
THAT caused his asthma to go into overdrive, and the next thing I know I'm trying to hold him on his side so he doesn't aspirate any of the vomit-laced foam he's coughing up, and trying to clear his mouth for a few seconds so I can use his rescue inhaler on him. I say trying because he's still spasming at this point, so it was rather like trying to wrestle a very strong rabid sea lion. I managed to get the albuterol inside him, and he started to breath much better, so I put him back on the couch, gave him a pile of benedril, and went to get a warm washcloth to wash the spittle off him.
Aren't I thoughtful?
Well apparently not, because he fell off the couch and got a second lungful of dust. Welp, home care is all over now, time to call in the pros. I called 911, fully understanding that unless the COPES money had kicked in, we wouldn't be able to pay this trip.
The EMTs were at our place in less than a minute- HOW DO THEY DO THAT?
The fire station is clear across town, easily three miles away. Maybe four.
Anyway, they were wonderfully sweet, helped stabilize his breathing, and waited with us until the Benedril kicked in, saving us the cost of a trip. We discussed the treatment plan we are on for his spasms, shared a few nurse jokes, and dissected the local doctors in gossip. Then, after Little Hawk was breathing normally and his spasms were under control, they helped me carry him to bed and cleaned up, heading back to the station.
As they headed out the door, the Captain turned and shook my hand with a kind expression on his face.
"Honey, I know that some of the docs have their heads up their asses over your husband there, and most of 'em think he's a Munchausen’s, but we all know the truth. This is real, and this is terrible, but you are a real hero for sticking by him and both of you are gonna be ok."
It's a good thing he hurried out because I would have died of embarrassment if he had seen how hard that made me cry. These were good tears, mind, because it's been such a long time since we've had someone in the medical field be nice to us and show some sympathy, when we are so jaded by doctors who dismiss us and shove us in the corner of the corridor, on a cot behind the mobile xray machine. Having him say that made the whole horrible day better.
I DO love my husband, more than life itself. I WILL stay with him and support him no matter how bad his health is, because a year ago Sunday, I made a vow to. He is an amazing, kind, thoughtful, funny, handsome, and all around wonderful man, and he is worth any amount of pain and trauma, and it's nice to have that reaffirmed by a professional.
Also, it's nice being called a hero by a REAL HERO.
Need me to back up? OK. I deleted a really long, detailed account of how terrible my day was. It started at Five AM and it didn't end until nearly midnight, but it ended well and that's the important thing.
The short version is that Little Hawk had a pretty bad spasm day today, and it was made worse by the fact that he is getting frustrated with the sedation his meds cause and delayed in taking them until it was too late to do more than keep them from being uncontrollable, rather than making them go away. He was resting on the couch in between attacks, and I turned my back for a minute to get him his meds, and his spasms caused him to fall off the couch and inhale a big lungful of carpet dust.
THAT caused his asthma to go into overdrive, and the next thing I know I'm trying to hold him on his side so he doesn't aspirate any of the vomit-laced foam he's coughing up, and trying to clear his mouth for a few seconds so I can use his rescue inhaler on him. I say trying because he's still spasming at this point, so it was rather like trying to wrestle a very strong rabid sea lion. I managed to get the albuterol inside him, and he started to breath much better, so I put him back on the couch, gave him a pile of benedril, and went to get a warm washcloth to wash the spittle off him.
Aren't I thoughtful?
Well apparently not, because he fell off the couch and got a second lungful of dust. Welp, home care is all over now, time to call in the pros. I called 911, fully understanding that unless the COPES money had kicked in, we wouldn't be able to pay this trip.
The EMTs were at our place in less than a minute- HOW DO THEY DO THAT?
The fire station is clear across town, easily three miles away. Maybe four.
Anyway, they were wonderfully sweet, helped stabilize his breathing, and waited with us until the Benedril kicked in, saving us the cost of a trip. We discussed the treatment plan we are on for his spasms, shared a few nurse jokes, and dissected the local doctors in gossip. Then, after Little Hawk was breathing normally and his spasms were under control, they helped me carry him to bed and cleaned up, heading back to the station.
As they headed out the door, the Captain turned and shook my hand with a kind expression on his face.
"Honey, I know that some of the docs have their heads up their asses over your husband there, and most of 'em think he's a Munchausen’s, but we all know the truth. This is real, and this is terrible, but you are a real hero for sticking by him and both of you are gonna be ok."
It's a good thing he hurried out because I would have died of embarrassment if he had seen how hard that made me cry. These were good tears, mind, because it's been such a long time since we've had someone in the medical field be nice to us and show some sympathy, when we are so jaded by doctors who dismiss us and shove us in the corner of the corridor, on a cot behind the mobile xray machine. Having him say that made the whole horrible day better.
I DO love my husband, more than life itself. I WILL stay with him and support him no matter how bad his health is, because a year ago Sunday, I made a vow to. He is an amazing, kind, thoughtful, funny, handsome, and all around wonderful man, and he is worth any amount of pain and trauma, and it's nice to have that reaffirmed by a professional.
Also, it's nice being called a hero by a REAL HERO.
Thursday, April 28, 2011
Pottery, Perfect Sunshine, and Personal Issues
I have been putting up a little more pottery on Etsy this week, after spending a little bit of my spending money on pretty blue dyed merino roving. It was dirt cheap, though...and I can't get a deep blue with my own dyes.
A small sample of the stuff I have up now.
The money I make in my Etsy store is all I can spend on myself. Our budget is so tight that I can't even take the twenty out of every paycheck for "me" money, but since my Etsy money goes into a special PayPal account, we can't really use it for grocery shopping or paying hospital bills. That's the money I use to keep my sanity at least marginally intact, buying aromatherapy candles, audiobooks to knit to, wool and ect online. Just knowing I have my own little money stash helps so much.
I'm supposed to be saving up for a spinning wheel, and I am. In fact, to encourage people, I am having a Spring Special. If you spend more than $30 in my Etsy store, (link is on my sidebar) I will knit you a free kerchief from my hand-dyed yarn. Here's one I made from my own handspun.
If you have time, please take a look at the shop.
Tuesday, April 26, 2011
Blech
I'm sorry that I haven't posted a lot. I always mean to, but usually the times I think of good posts are the times I am out of reach of my computer. I really, really need an Ipad.
I've been ill for the last few weeks, and it got really bad over the weekend, infected kidneys, most likely. Anyone who asks me how I am is regretting it. : D
Anyway, I have been carding wool into roving and dying it merrily. Yesterday, since it was raining and I wanted to cheer myself up, I took a break from the wool (and my homework) and dyed up eight skeins if the Fisherman's Wool that can be found in Fred Meyers. Since the yarn store in town is closing, that's the only local source of yarn I'm going to have, so I had better learn to cope. I got some really pretty colors.
I've been ill for the last few weeks, and it got really bad over the weekend, infected kidneys, most likely. Anyone who asks me how I am is regretting it. : D
Anyway, I have been carding wool into roving and dying it merrily. Yesterday, since it was raining and I wanted to cheer myself up, I took a break from the wool (and my homework) and dyed up eight skeins if the Fisherman's Wool that can be found in Fred Meyers. Since the yarn store in town is closing, that's the only local source of yarn I'm going to have, so I had better learn to cope. I got some really pretty colors.
As you can see, the dandelions are welcoming the wonderful sunshine that we have been enjoying today. Coraline has been enjoying it too.
She's curled up on my favorite wool sweater. Luckily it's the same color that she is.
My peat pots full of sprouts are really going to town. I planted the spring peas and the beans outside, and so far they are doing alright, but I don't trust the squash and ect for another week. The peppers aren't big enough to transplant, and I have had to replant tomato seeds because the cats pulled up all the starts and ate them. I may just buy starts at the Farmer's Market that starts in two weeks.
My happy little carrots.
Watermelons.
Most cheering, though, is this bunch of volunteer tulips that popped up by the corner of the house. Surprise flowers are such a lovely bonus!
Monday, April 11, 2011
SHEEP SHEEP akjdfsiuhfjcvnsdfk
Hurgh. So much to do. So little desire to do anything.
I'm slowly but surely climbing out of the depression hole that last quarter dug. It's helped a lot that Little Hawk is feeling much better, spring is finally here, I now have a Fairy Godmother, and Coraline is finally cuddly.
Little Hawk's worst Post Concussive Disorder symptoms are finally gone. His nausea, fainting, and memory issues are better, and although the headaches are still around, they are now manageable. His spasms have responded to this sudden surge of wellness, however, and returned with crippling force. Luckily, so far, his medications have kept them managed, and by managed, I mean merely painful, not stroke-inducing.
The sunshine is finally here, and although it is still freezing at night, I have started plants indoors, getting ready for this weekend when my awesome mom will bring me some raised beds she built me and fill dirt for them. Unfortunately, it seems that my cats like veggies.... they ate all of my bean starts right down to the roots, and I have to start all over again now. Still, the spring peas are all ok, and the onions look awesome. I just need to plant some wheatgrass, so that cats will eat their own munchies and leave mine alone. I was ready to murder Coraline, who was the ringleader. She's just too adept in using her powers of cuteness. In fact, the little fuzzball has figured out that if she wants to snuggle in the middle of the night, she'll end up locked out of the bedroom. So instead, she sits next to my pillow, and wits for my alarm clock to ring, then turns into a purring pile of snuggle. I woke up a few minutes early and saw her waiting impatiently.
Classes have started again, and a wonderful lady in my Ceramics class is a fellow knitter and spinner, with a sheep farm of her very own. Upon hearing that I wanted to spin, she kindly helped me pick out my first spindle, then gave me some wool roving to practice with. Today, she surprised me with an ENTIRE FLEECE all of my own. It is HUGE. Following her directions, I spread it out on a blanket on the lawn to clean, and it was as large as a queen sized blanket. Holy Crap! I picked off most of the hay and straw, along with the edges that were too felted and matted to spin. They seemed perfectly good for stuffing, though, so I saved them in a bag for a rainy day. Little Hawk, who was puttering about in the house, had no idea what was going on. I carefully split the fleece in half, then rolled up one half and carried it inside to soak in the washing machine. Little Hawk looked up as I came in.
"Check out my present from my Fairy Godmother! A whole fleece all of my own!" I chirped in delight. He took a deep breath, clearly about to congratulate me on my windfall, and stopped, wheezing as the wave of SHEEP hit him.
I'd forgotten to warn the poor man that Sheep has a very....distinctive...odor. I think it smells great, although not as good as a happy, clean cow. To someone who isn't used to animal odors, though......
The poor man is so sweet. He's not complaining...yet...
I'm slowly but surely climbing out of the depression hole that last quarter dug. It's helped a lot that Little Hawk is feeling much better, spring is finally here, I now have a Fairy Godmother, and Coraline is finally cuddly.
Little Hawk's worst Post Concussive Disorder symptoms are finally gone. His nausea, fainting, and memory issues are better, and although the headaches are still around, they are now manageable. His spasms have responded to this sudden surge of wellness, however, and returned with crippling force. Luckily, so far, his medications have kept them managed, and by managed, I mean merely painful, not stroke-inducing.
The sunshine is finally here, and although it is still freezing at night, I have started plants indoors, getting ready for this weekend when my awesome mom will bring me some raised beds she built me and fill dirt for them. Unfortunately, it seems that my cats like veggies.... they ate all of my bean starts right down to the roots, and I have to start all over again now. Still, the spring peas are all ok, and the onions look awesome. I just need to plant some wheatgrass, so that cats will eat their own munchies and leave mine alone. I was ready to murder Coraline, who was the ringleader. She's just too adept in using her powers of cuteness. In fact, the little fuzzball has figured out that if she wants to snuggle in the middle of the night, she'll end up locked out of the bedroom. So instead, she sits next to my pillow, and wits for my alarm clock to ring, then turns into a purring pile of snuggle. I woke up a few minutes early and saw her waiting impatiently.
Classes have started again, and a wonderful lady in my Ceramics class is a fellow knitter and spinner, with a sheep farm of her very own. Upon hearing that I wanted to spin, she kindly helped me pick out my first spindle, then gave me some wool roving to practice with. Today, she surprised me with an ENTIRE FLEECE all of my own. It is HUGE. Following her directions, I spread it out on a blanket on the lawn to clean, and it was as large as a queen sized blanket. Holy Crap! I picked off most of the hay and straw, along with the edges that were too felted and matted to spin. They seemed perfectly good for stuffing, though, so I saved them in a bag for a rainy day. Little Hawk, who was puttering about in the house, had no idea what was going on. I carefully split the fleece in half, then rolled up one half and carried it inside to soak in the washing machine. Little Hawk looked up as I came in.
"Check out my present from my Fairy Godmother! A whole fleece all of my own!" I chirped in delight. He took a deep breath, clearly about to congratulate me on my windfall, and stopped, wheezing as the wave of SHEEP hit him.
I'd forgotten to warn the poor man that Sheep has a very....distinctive...odor. I think it smells great, although not as good as a happy, clean cow. To someone who isn't used to animal odors, though......
The poor man is so sweet. He's not complaining...yet...
Monday, March 14, 2011
Snuggles
Spring Break is finally here, and none too soon- I'm sick. Just the creeping crud, nothing serious, but I'm grouchy and have no energy. My sweet, sweet husband has been trying to pamper me as best he can, eating yogurt and hot dogs so I don't have to cook, trying to do some laundry for me, and, sweetest of all, every time I try to get up and do something he threatens to sit on me. So, here I am, exiled to recovery and knitting up a pair of socks for myself.
The weather is finally starting to improve, which is nice because the birds are back. They woke me up at six this morning, which would have annoyed me on any other day, but listening to them sing and seeing the first traces of sunlight peek through the curtains was so soothing. Plus, it's hard to wake up in a bad mood when you are snuggled up against your warm husband, with your face buried in the back of his neck, listening to him breathing. As a bonus, the kitten had burrowed under the covers and was curled up in the small of my back, purring.
Life is good. I have to keep remembering that.
The weather is finally starting to improve, which is nice because the birds are back. They woke me up at six this morning, which would have annoyed me on any other day, but listening to them sing and seeing the first traces of sunlight peek through the curtains was so soothing. Plus, it's hard to wake up in a bad mood when you are snuggled up against your warm husband, with your face buried in the back of his neck, listening to him breathing. As a bonus, the kitten had burrowed under the covers and was curled up in the small of my back, purring.
Life is good. I have to keep remembering that.
Thursday, February 24, 2011
Le Sigh
Just when I thought Little Hawk was feeling better.....
He had a relatively good morning today, and even felt well enough to drink some coffee. The next thing I know, he starts throwing up and then got dizzy and fell off the couch. Twice.
Ensuing conversation:
Little Hawk: Honey! Call 911, I think I broke something!
Little Bird: What? What did you break? Where does it hurt?
Little Hawk: I don't know, but every time I move I hear something crunching!
Little Bird: Dear, you fell on a bag of corn chips.
Luckily, the corn chips did not need an ambulance.
I got him back up on the couch, with a rolled up blanket under the cushions so he couldn't fall off again. (yay for nurse skills!) I email my teacher that I may be late for class, and go to the kitchen to wash some dishes while I wait for his doctor to call. Now, remember that Post Concussive Disorder causes short term memory loss, so it's basically like having stage three Alzheimer's. Naturally, Little Hawk dozed off, woke up, wondered why he was on the couch, and popped up into his chair again. Have I mentioned he's a paraplegic?
He rolls into the kitchen, scaring the liver out of me, and asks for some Sprite and a cold compress I put him back on the couch with orders NOT TO MOVE and then, finally, his doctor calls. While I am busy talking to his doctor, he sneaks off the couch again, only to have another dizzy spell and crack his forehead on the coffee table. I cut things short with the doctor, turn him on his side while he dry heaves, then put him to bed. Another email off to the teacher, and an emergency appointment with the local clinic. Then, while I was on the phone with the clinic, he got up AGAIN.
I love him so much. I'm just terrified that he's going to fall and die.
No time to cry, I have a doctor's appointment to go to.
He had a relatively good morning today, and even felt well enough to drink some coffee. The next thing I know, he starts throwing up and then got dizzy and fell off the couch. Twice.
Ensuing conversation:
Little Hawk: Honey! Call 911, I think I broke something!
Little Bird: What? What did you break? Where does it hurt?
Little Hawk: I don't know, but every time I move I hear something crunching!
Little Bird: Dear, you fell on a bag of corn chips.
Luckily, the corn chips did not need an ambulance.
I got him back up on the couch, with a rolled up blanket under the cushions so he couldn't fall off again. (yay for nurse skills!) I email my teacher that I may be late for class, and go to the kitchen to wash some dishes while I wait for his doctor to call. Now, remember that Post Concussive Disorder causes short term memory loss, so it's basically like having stage three Alzheimer's. Naturally, Little Hawk dozed off, woke up, wondered why he was on the couch, and popped up into his chair again. Have I mentioned he's a paraplegic?
He rolls into the kitchen, scaring the liver out of me, and asks for some Sprite and a cold compress I put him back on the couch with orders NOT TO MOVE and then, finally, his doctor calls. While I am busy talking to his doctor, he sneaks off the couch again, only to have another dizzy spell and crack his forehead on the coffee table. I cut things short with the doctor, turn him on his side while he dry heaves, then put him to bed. Another email off to the teacher, and an emergency appointment with the local clinic. Then, while I was on the phone with the clinic, he got up AGAIN.
I love him so much. I'm just terrified that he's going to fall and die.
No time to cry, I have a doctor's appointment to go to.
Monday, February 7, 2011
Fighting the Grumpies
I am working on a new style of living, a new philosophy and approach to life, if you will. After coming to the realization that I had to take charge before the negativity took over, I started meditating on what things made me happy and how I could improve myself and the lives of those around me. Then I read a beautiful post by Sonia on Cozy Homemaking, and everything clicked.
I create my own happiness by making, by crafting. I propagate that happiness by making these crafts for others, by thinking of what object a person needs, what would make someone happy and producing that object. The joy I feel is the joy of sharing - if I make someone else happy, then I am happy too.
Therefore, I am rewriting my new year's resolutions. My new resolution is simple. Every day, I will work on some form of art project.* Every day, I will find a way to make someone smile. And every week, I will give someone something.
* Not hard, since I AM in art school.
I create my own happiness by making, by crafting. I propagate that happiness by making these crafts for others, by thinking of what object a person needs, what would make someone happy and producing that object. The joy I feel is the joy of sharing - if I make someone else happy, then I am happy too.
Therefore, I am rewriting my new year's resolutions. My new resolution is simple. Every day, I will work on some form of art project.* Every day, I will find a way to make someone smile. And every week, I will give someone something.
* Not hard, since I AM in art school.
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