admitted into the hospital. rushed via ambulance straight from dialysis.
intense chest pains, difficulty breathing, plus usual discomforts i've been experiencing lately at the end of my treatments. oxygen immediately given. chest pain wasn't relieved from nitro administered. then again when paramedics arrived. scary ordeal. surrounded by concerned professionals -- tech, nurses, paramedics; my husband. all i could think of at the time, aside from the discomfort from all the instant attention was,
"oh, no! am i dying? how much is all this going to cost? is this pain all in my head? darn, i'm wearing a head scarf. good thing i painted my toenails night prior. will i be able to swim tomorrow?".
i'm still here. thankful to be alone in a single room. receiving quality care. and most importantly, feeling much better now. still alive and well. with more opportunities to live, laugh and love.
surrounded by my knitting, library books, coloring books/crayons. my laptop and my phone. i have function of my mind and my body, which i'm immensely grateful. my husband is home with our 13 year old. they both are well. my son is well while in college. these truths give me peace of mind.
really fortunate i do have insurance still and haven't had to suffer the reality of not having the privilege (the human right) to it. the depressing accumulating healthcare bills, well. that's another story. one which others can possibly relate to now or perhaps in their future.
to my benefit, several test were ran in ER -- chest X-ray, CT scan w/contrast. once i was finally admitted (keep in mind i get dialysis at 4 am. i woke mid-treatment at 7 am feeling unwell. paramedics called by 8 am. arrived in ER by 9 am)
by the time i was comfortably in ER receiving more pain relief, i was exhausted. was famished.
while admitted, i've had a few more test done. had a nuclear stress test, had an EKG. currently waiting to get dialysis again (even though i had treatment yesterday - contrast from CT scan test has to be removed from my system).
last time something like this happened years ago, i was rushed to ER via ambulance from dialysis, it was discovered i have a heart aneurysm. since then, i have been monitored closely by a cardiac physician.
luckily, i have the best doctors, the best care, the best support ever. quality, this fact makes what i'm enduring more endurable.
Friday, June 30, 2017
Monday, June 12, 2017
My dear daughter (13) claims she's going to stop bathing. If she's not as fresh, the Witches won't seek her out, like they did in a book by one of her favorite authors, Roald Dahl.
Her logic, the dirt will clog her pores thus disguising her kid-scent. Apparently Witches were looking for prepubescent children. Since she could talk, there's been some sort of protest in her battle with her dad and I over basic hygiene practices.
She's a girl who pretty much functions like a stereotypical boy. Loves sports, physical play, active all day long until she passes out by the end of the day. As a result, she develops her share of dirt which she prefers to clog her pores to disguise her kid-scent, I guess.
Regardless of what she says, what she reads. We will continue to vigilantly parent her. No matter how exhausting. Making sure she develops and maintains healthy habits.
Her logic, the dirt will clog her pores thus disguising her kid-scent. Apparently Witches were looking for prepubescent children. Since she could talk, there's been some sort of protest in her battle with her dad and I over basic hygiene practices.
She's a girl who pretty much functions like a stereotypical boy. Loves sports, physical play, active all day long until she passes out by the end of the day. As a result, she develops her share of dirt which she prefers to clog her pores to disguise her kid-scent, I guess.
Regardless of what she says, what she reads. We will continue to vigilantly parent her. No matter how exhausting. Making sure she develops and maintains healthy habits.
Friday, June 9, 2017
my daughter had a soccer tournament over the weekend. last one for the season, thankfully. Saturday 2 games (immediately following 4 am dialysis) and Sunday 2 games. location over an hour away. this time, we somehow managed to afford the privilege to stay in a hotel.
this hotel stay was the first time we've stayed away from home since 2000, the year our daughter died ( i tend to keep track of time in terms of the year she died and the year 2014, when i almost died. not to sound too morbid or melancholy, it just is. and i'm okay with it). but anyways...
this experience was thoroughly enjoyed and thoroughly needed. though the team struggled for wins (as usual, sigh), the point was for my daughter to do her best (which she did) and to have fun (which she also did). and all while, daddy and i had the luxury to drive back to a nearby hotel (we stayed at a Residence Inn Marriott) which turned out to be an awesome getaway and the best idea we've had all year long.
it was like a home away from home. full kitchen and amenities. unlike being at home, in our cluttered, dusty/dated apartment we had the advantages of: air condition. space. cleanliness (at least without a blue light). frig w/food we'd purchased. a tv. and most importantly, we had each other w/our yarn, books, board/card games and laptops.
so the plan is. to try to get away more often. live more fully. yes, having to commit to dialysis treatments three times per week puts a strain on things, but travel is doable. all i have to do is, if need be, find another clinic in the area i'm visiting. yes having more financial stability would make this easier with only one income [i'm not on disability, long story], but we may be able to take smaller, mostly local trips more often. because during that weekend excursion, we quickly learned, we all need a break from it all. we need a stress-free, leisurely getaway.
this hotel stay was the first time we've stayed away from home since 2000, the year our daughter died ( i tend to keep track of time in terms of the year she died and the year 2014, when i almost died. not to sound too morbid or melancholy, it just is. and i'm okay with it). but anyways...
this experience was thoroughly enjoyed and thoroughly needed. though the team struggled for wins (as usual, sigh), the point was for my daughter to do her best (which she did) and to have fun (which she also did). and all while, daddy and i had the luxury to drive back to a nearby hotel (we stayed at a Residence Inn Marriott) which turned out to be an awesome getaway and the best idea we've had all year long.
it was like a home away from home. full kitchen and amenities. unlike being at home, in our cluttered, dusty/dated apartment we had the advantages of: air condition. space. cleanliness (at least without a blue light). frig w/food we'd purchased. a tv. and most importantly, we had each other w/our yarn, books, board/card games and laptops.
so the plan is. to try to get away more often. live more fully. yes, having to commit to dialysis treatments three times per week puts a strain on things, but travel is doable. all i have to do is, if need be, find another clinic in the area i'm visiting. yes having more financial stability would make this easier with only one income [i'm not on disability, long story], but we may be able to take smaller, mostly local trips more often. because during that weekend excursion, we quickly learned, we all need a break from it all. we need a stress-free, leisurely getaway.
I finally completed this cable knit slouch hat I've been laboring on for what seems like an eternity. I've been knitting for years now, but when I had the stroke, I had to relearn - everything, thus pretty much start from scratch.
Luckily I frequent several local knitting groups. They are everywhere. Just google to find one in your area. Usually free and full of fellow knitters and crocheters who are at various levels in skill. Often many will share what they know and vice versa, you can share what you know.
These groups are a treasure. You don't have to join, just show up. Which is great, considering I'm not a joiner.
My whole family knits and crochets. Husband and son too. My daughter is really talented with yarn. Impressively, she often assists others, who are mostly her elder in some complicated technique. I'm amazed at her abilities.
And my husband, just last night. I was begging him to come to bed. Having been in bed since that mornings dialysis I grew impatient close to midnight as I still awaited his company.
10 pm, 11 pm, midnight, "just one more row honey, then I'll come to bed". Meanwhile, I'm like, "are you serious?!"
I'm thankful we all have a hobby in common. And most of my friends (and growing relationships) have yarn in common. It really has been a great stress reliever as I cope with this disease - which sometimes I define as dreadful when feeling pessimistic or even depressed.
Now that I completed the cable hat, I need to self-discipline and complete other stored UFO's (unfinished objects). So far, I'm off to a good start.
Luckily I frequent several local knitting groups. They are everywhere. Just google to find one in your area. Usually free and full of fellow knitters and crocheters who are at various levels in skill. Often many will share what they know and vice versa, you can share what you know.
These groups are a treasure. You don't have to join, just show up. Which is great, considering I'm not a joiner.
My whole family knits and crochets. Husband and son too. My daughter is really talented with yarn. Impressively, she often assists others, who are mostly her elder in some complicated technique. I'm amazed at her abilities.
And my husband, just last night. I was begging him to come to bed. Having been in bed since that mornings dialysis I grew impatient close to midnight as I still awaited his company.
10 pm, 11 pm, midnight, "just one more row honey, then I'll come to bed". Meanwhile, I'm like, "are you serious?!"
I'm thankful we all have a hobby in common. And most of my friends (and growing relationships) have yarn in common. It really has been a great stress reliever as I cope with this disease - which sometimes I define as dreadful when feeling pessimistic or even depressed.
Now that I completed the cable hat, I need to self-discipline and complete other stored UFO's (unfinished objects). So far, I'm off to a good start.
In my blog, I've touched lightly on that my kids are home educated. My 20 year old son, who started college at 14 is still in school. Successfully and passionately studying physics, minoring in computer science.
Second born, would be 17 year old daughter is deceased. What she couldof/wouldof been is only in my imagination until I'm at eternal rest. And my now 13 year old daughter is completing 7th grade.
Most who have met my kids or read my blog know, that I've designed an efficient and effective curriculum for my kids. A beneficial educational method that I hope to someday publish.
Now that the first day of summer - Tuesday, June 20th is quickly approaching, I'm back on my laptop designing a summer curriculum since my husband and I believe learning happens year round.
Of course, the intensity is lessened during summer. Daughter typically gets one week off each month - which come in handy on the week prior or during her monthly cycle. I just wish I'd thought to give my eldest a week off each month when he was an adolescent. However, the youngest usually gets the advantages of an improved parent. When you know better, you do better.
I consider myself a budding writer. If I'm really good at this craft, I'm not secure in the idea yet, especially since the stroke (had to relearn everything - how to read, write, talk, walk, sit, eat, drive, knit, crochet; everything). Each time I update Sage's Curriculum, I'm proud of what I've produced and the results I see in my kids everyday. Witnessing their qualities and development only motivates me to stay the course. Keep doing what works for our family.
Second born, would be 17 year old daughter is deceased. What she couldof/wouldof been is only in my imagination until I'm at eternal rest. And my now 13 year old daughter is completing 7th grade.
Most who have met my kids or read my blog know, that I've designed an efficient and effective curriculum for my kids. A beneficial educational method that I hope to someday publish.
Now that the first day of summer - Tuesday, June 20th is quickly approaching, I'm back on my laptop designing a summer curriculum since my husband and I believe learning happens year round.
Of course, the intensity is lessened during summer. Daughter typically gets one week off each month - which come in handy on the week prior or during her monthly cycle. I just wish I'd thought to give my eldest a week off each month when he was an adolescent. However, the youngest usually gets the advantages of an improved parent. When you know better, you do better.
I consider myself a budding writer. If I'm really good at this craft, I'm not secure in the idea yet, especially since the stroke (had to relearn everything - how to read, write, talk, walk, sit, eat, drive, knit, crochet; everything). Each time I update Sage's Curriculum, I'm proud of what I've produced and the results I see in my kids everyday. Witnessing their qualities and development only motivates me to stay the course. Keep doing what works for our family.
some dialysis treatments go smoothly. then, some dialysis treatments go the opposite of smoothly.
lately i've been showing up to treatments too heavy. between treatments (which are three times per week, three hours per session), i'm allotted to gain 2 or less kilos. well, my foodie behind has been gaining far more.
for instance, my last treatment i gained a devastating 5 kilos! this was over a two day period, but still... and what happens when that happens? more fluid has to be removed.
and the risk of removing too much fluid not only can be deadly, to my understanding, but the immediate side effects, rather unpleasant, to say the least.
i get dialysis Tuesday, Thursday, and Saturday starting at 4 am. usually by 4:30 am i am sound asleep. when i drift off, my husband goes to the car and naps himself (he works from home on my treatment days).
when i'm asleep, i'm asleep. and i'll sleep until treatment is over if comfortable.
normally my treatment is over by 8 am. lately i've been waking in intense pain or discomfort by 7 am (which gives me another hour to suffer through whatever because i must stay hooked to machine until treatment ends).
discomfort can be varied, if not all of the following: headache. nausea. hot flashes. urge to have a bowel movement. feeling faint. rapid heartbeat. cramping - mild to intense. i can go from moaning to actually screaming in agony from the muscle spasms that can be in one or more muscle groups -- usually my legs to all over muscle spasms at one time (while hooked to the machine via two huge needles in my left arm and a blood pressure cuff on right).
blood pressure drops at this time - think this is part of the vaso-vagal reaction [google symptoms to confirm] usually technician gets an IV bag and immediately returns removed fluid back into my body - which means, i'll go home, still heavier than i should be. feeling swollen - perhaps needing to come back the next day (on a nondialysis day or try to remove more fluids next treatment day).
through all the discomfort, usually i have at least 45 minutes left of treatment. the pain, indescribable. honestly, at these grueling times, i wish they could just instantly put me to sleep.
it's humbling. you can't fake strength and discipline at this time. if no one knew you were present on this day, they'll soon know different once you or they leave. i'm sure my screams are audible enough for the entire unit can hear. but at that time, i don't care. what others think and feel about who/what they think i am is the last thing on my mind during this hour or so.
in the dialysis unit i'm assigned, the demographic is mostly non-english speakers. a higher elderly population. and a mild to high percentage are really sickly (like i once was back in 2014/2015). so, having a lengthy, substantive conversation before, during or after treatments is mostly non-doable. i usually acknowledge others with a pleasant smile or a wave. rarely do i have a lengthy dialogue, which is okay. the experience, my reality - it is what it is.
but one thing i noticed (and am grateful for), everybody recognizes pain. no matter the language barrier, the culture, the whatever. pain is pain. thus, compassion is universal.
and this is proven every single time i'm humbled by those vicious muscle spasms. i just want to die in those turtle minutes, seeming like days.
if my husband is not present or ineffective if/when present. others come to my rescue. yes, there are technicians and nurses assisting me, but also too. there are guest of other patients coming ~ w/concern. *the pain i experience may have been someone else or could be anyone at any hour.
mind you, at this painful time, i'm calling on ALL THE GODS. even my mother (whom i know wouldn't spit on me if i were on fire). i'm like, "oh god, someone please help me. momma!" over and over and over and over and over again, between screams. "please, help" i beg.
meanwhile, there's some stranger, non-english speaker at my feet. massaging where it hurts. helping or instructing my husband on what to do. typically my husband has one leg and some other person has the other.
all while i want to stand or walk around, but i can't. have to stay inclined in the comfy, pink, cushiony dialysis chair and deal with it. except what seems like some undeserved, nefarious punishment from something wicked with the power to inflict severe pain even on the innocent (or close to innocent).
once the episode is over all i can do is be gracious. say "thank you" over and over again, best i can. language difference is varied so it's not like i can find one non-english way to express my sincere appreciation.
but just like pain, gratitude is universal.
lately i've been showing up to treatments too heavy. between treatments (which are three times per week, three hours per session), i'm allotted to gain 2 or less kilos. well, my foodie behind has been gaining far more.
for instance, my last treatment i gained a devastating 5 kilos! this was over a two day period, but still... and what happens when that happens? more fluid has to be removed.
and the risk of removing too much fluid not only can be deadly, to my understanding, but the immediate side effects, rather unpleasant, to say the least.
i get dialysis Tuesday, Thursday, and Saturday starting at 4 am. usually by 4:30 am i am sound asleep. when i drift off, my husband goes to the car and naps himself (he works from home on my treatment days).
when i'm asleep, i'm asleep. and i'll sleep until treatment is over if comfortable.
normally my treatment is over by 8 am. lately i've been waking in intense pain or discomfort by 7 am (which gives me another hour to suffer through whatever because i must stay hooked to machine until treatment ends).
discomfort can be varied, if not all of the following: headache. nausea. hot flashes. urge to have a bowel movement. feeling faint. rapid heartbeat. cramping - mild to intense. i can go from moaning to actually screaming in agony from the muscle spasms that can be in one or more muscle groups -- usually my legs to all over muscle spasms at one time (while hooked to the machine via two huge needles in my left arm and a blood pressure cuff on right).
blood pressure drops at this time - think this is part of the vaso-vagal reaction [google symptoms to confirm] usually technician gets an IV bag and immediately returns removed fluid back into my body - which means, i'll go home, still heavier than i should be. feeling swollen - perhaps needing to come back the next day (on a nondialysis day or try to remove more fluids next treatment day).
through all the discomfort, usually i have at least 45 minutes left of treatment. the pain, indescribable. honestly, at these grueling times, i wish they could just instantly put me to sleep.
it's humbling. you can't fake strength and discipline at this time. if no one knew you were present on this day, they'll soon know different once you or they leave. i'm sure my screams are audible enough for the entire unit can hear. but at that time, i don't care. what others think and feel about who/what they think i am is the last thing on my mind during this hour or so.
in the dialysis unit i'm assigned, the demographic is mostly non-english speakers. a higher elderly population. and a mild to high percentage are really sickly (like i once was back in 2014/2015). so, having a lengthy, substantive conversation before, during or after treatments is mostly non-doable. i usually acknowledge others with a pleasant smile or a wave. rarely do i have a lengthy dialogue, which is okay. the experience, my reality - it is what it is.
but one thing i noticed (and am grateful for), everybody recognizes pain. no matter the language barrier, the culture, the whatever. pain is pain. thus, compassion is universal.
and this is proven every single time i'm humbled by those vicious muscle spasms. i just want to die in those turtle minutes, seeming like days.
if my husband is not present or ineffective if/when present. others come to my rescue. yes, there are technicians and nurses assisting me, but also too. there are guest of other patients coming ~ w/concern. *the pain i experience may have been someone else or could be anyone at any hour.
mind you, at this painful time, i'm calling on ALL THE GODS. even my mother (whom i know wouldn't spit on me if i were on fire). i'm like, "oh god, someone please help me. momma!" over and over and over and over and over again, between screams. "please, help" i beg.
meanwhile, there's some stranger, non-english speaker at my feet. massaging where it hurts. helping or instructing my husband on what to do. typically my husband has one leg and some other person has the other.
all while i want to stand or walk around, but i can't. have to stay inclined in the comfy, pink, cushiony dialysis chair and deal with it. except what seems like some undeserved, nefarious punishment from something wicked with the power to inflict severe pain even on the innocent (or close to innocent).
once the episode is over all i can do is be gracious. say "thank you" over and over again, best i can. language difference is varied so it's not like i can find one non-english way to express my sincere appreciation.
but just like pain, gratitude is universal.
today i told my sweet, cuddly, funny, loving, strong-willed; recently turned 13 year old daughter to floss her teeth. she has braces (which are coming off in a few months) and her gums looked swollen.
her curt response, "stop focusing on what you see on the outside. Roald Dahl (one of her favorite authors - she's an avid reader) said, if you think ugly thoughts, you're going to be ugly. if you think nice thoughts, you'll be pretty". then she went back to her computer to finish her Sage's Curriculum.
meanwhile i'm like, "what does that quote have to do with your flossing her teeth?!"
still baffled, i researched the actual quote. it is, "if a person has ugly thoughts everyday, every week, every year, the face gets uglier and uglier until you can hardly bear to look at it.
a person who has good thoughts cannot ever be ugly. you can have a wonky nose and a crooked mouth and a double chin and stick out teeth, but if you have good thoughts it will shine out of your face like sunbeams and you will always look lovely".
i'm so thankful i introduced the joy of reading to my kids very early on. they can lose themselves in quality literature. and if they stumble across quotes, such as this. words that will help encourage self love and a positive attitude. well then that makes my job of parenting, mothering, mentoring, inspiring a bit easier.
i'm blunt. especially since the stroke. i tend to get right to the point in what i'm trying to say.
i texted my husband, telling him what she had said. i reminded him of the struggles with her. seems if i tell her - honey, that's enough food. somehow she hears me calling her fat. if i say - honey, wash your face, somehow she hears me calling her ugly. if is say - honey, clean your bedroom, somehow she hears me saying, i don't love her.
damn, is there a sugarcoating class for mothers?!
hubby's response, "it's called teenage girl syndrome. it doesn't matter what you say, she is going to interpret it to the extreme".
sigh!
again, i'm happy when she's able to reason her way through a healthier thoughts when in a healthy state of mind. but, according to the warning app on our phones, those days of the month are fastly approaching. i need to find a sugarcoating class quick.
her curt response, "stop focusing on what you see on the outside. Roald Dahl (one of her favorite authors - she's an avid reader) said, if you think ugly thoughts, you're going to be ugly. if you think nice thoughts, you'll be pretty". then she went back to her computer to finish her Sage's Curriculum.
meanwhile i'm like, "what does that quote have to do with your flossing her teeth?!"
still baffled, i researched the actual quote. it is, "if a person has ugly thoughts everyday, every week, every year, the face gets uglier and uglier until you can hardly bear to look at it.
a person who has good thoughts cannot ever be ugly. you can have a wonky nose and a crooked mouth and a double chin and stick out teeth, but if you have good thoughts it will shine out of your face like sunbeams and you will always look lovely".
i'm so thankful i introduced the joy of reading to my kids very early on. they can lose themselves in quality literature. and if they stumble across quotes, such as this. words that will help encourage self love and a positive attitude. well then that makes my job of parenting, mothering, mentoring, inspiring a bit easier.
i'm blunt. especially since the stroke. i tend to get right to the point in what i'm trying to say.
i texted my husband, telling him what she had said. i reminded him of the struggles with her. seems if i tell her - honey, that's enough food. somehow she hears me calling her fat. if i say - honey, wash your face, somehow she hears me calling her ugly. if is say - honey, clean your bedroom, somehow she hears me saying, i don't love her.
damn, is there a sugarcoating class for mothers?!
hubby's response, "it's called teenage girl syndrome. it doesn't matter what you say, she is going to interpret it to the extreme".
sigh!
again, i'm happy when she's able to reason her way through a healthier thoughts when in a healthy state of mind. but, according to the warning app on our phones, those days of the month are fastly approaching. i need to find a sugarcoating class quick.
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