I Updated! 12/29/10
Wednesday, December 29th, 2010
I need to update a lot more to make up for all the missed entries and scratch that item off my 101 list. Can it happen? I’m starting to think not, stuff has changed so much. But we’ll see.
I’ve been a little sad lately since I found out some people I knew from that care facility I stayed at earlier in the year passed away. One being Tom, who I mentioned a fair bit. I really liked him. Turns out he died about a week after I left! Mildred, the chattiest of the dementia ladies, also passed on. And others, but I didn’t ask about everyone because it was too depressing. That got me thinking about Elaine, my favourite roommate from the other care facility I stayed at when I broke my wrist, and a quick Google search showed me she died about a year ago. Sigh.
I’ve been frequenting the care facility, visiting Nick. He went into the hospital back in May for the surgery that was supposed to help him, but it just made him WORSE. He was in the hospital up until about a month ago! Now he is living with the permanent long term care residents at the care facility. Once I was able to hire Nancy, we went to see him at the hospital back in October (with a Peter’s Drive In burger and shake, which he was very happy to get!) and a couple times since then. The first time I didn’t know he had moved back into the care facility, so we went to the drive in, which is very close to the care centre, then drove all the way to the hospital, parked, went up… and found out he had left!! So we drove allllll the way back to the care centre and he got a cold burger and melty shake. But at least I know where he is now, and he’s a lot closer, so visiting is easier. He is not, sad to say, in very good shape. His paralysis is getting worse by the day and he rarely even goes on Facebook now, it’s so hard. I definitely have to feed him his burger (or pizza, when we went a couple weeks ago. I’m his supplier) as he can’t lift his arms and has very limited use of a few fingers on one hand, that’s it. He says his lungs and breathing will be next to go, and he doesn’t want to be kept alive by machines, so…
I’m going this week and bringing him Puffs with lotion. He constantly needs someone to wipe his nose with tissue, and the kleenix in those places is rough. And when you’re at meals, it’s the rough napkins that are used. His poor nose is so red and sore. Do you realize how many times a day you lift your hand to scratch/pick/wipe your nose, eyes, ears, etc.? Can you imagine not being able to? I think I have scratched my head/face at least 5 times while typing this paragraph. It would suck beyond belief to NOT BE ABLE TO!
By the way, Nick doesn’t really have anyone. I think I may have mentioned when I was staying there before that the only visitor he ever had was his dad, and he did his laundry for him and stuff. So imagine my shock when his dad died in September. His mom lives somewhere in the US and judging by the stuff she posts on his Facebook, she is in denial about how bad things are with her son, otherwise she’d get her butt up here and be with him!! It makes me so mad to think about it. Last time I saw him he told me he’d had such a rough time with breathing and needing to spend the day in bed that he didn’t expect to wake up the next morning.
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I forgot to mention a very important event that happened between my last two entries… my friend Jason got married in September! For realz!
I sure hope they don’t mind me stealing that picture off Facebook.
I’m so happy for them and they are so happy! I need to talk to Jason about an available date for the Polyjesters to perform at a fundraiser for me in the new year. I’ve got a lot of money to raise to go for another procedure! Family and some friends really helped with Costa Rica, so I need to do some real fundraising for this next, and hopefully final, one. I’m going to see them on NYE but I probably won’t get to talk to them about that… it will be mayhem!
I started working on this entry a couple weeks ago, and with some fudging I have managed to make it look like I started it today. Typing on the Macbook is a headache with only one hand. no more caps, i’m sorry, it’s just too hard and takes too long. i can go about pretty quickly if i don’t use caps. faster than the frogpad! but i still want a new one. caps are important to me, i’m usually very anal about typos! new frogpads should be available in march or april. in the meantime i’ve got my eye on ebay for a lefty frogpad!
christmas. it’s a lot of work, isn’t it? i don’t think it’s worth it, in our family! christmas eve i went up to thalia’s and spent the evening with her, her hubby and daughter. lots of cheese, fruit, crackers and yummy food like that. no need for making a big turkey dinner, just lay out the stinky cheese!! i made them watch the polyjesters “are we there yet” dvd from 2002 (i think?) but they didn’t actually sit down until it was past the halfway mark. now they have to watch it again, and pay attention hehe
christmas day my dad picked me up and we drove out to my mom and bob’s, where my brother and his girlfriend were as well. lots of food and presents! i got the 4 in one printer/fax/copier/scanner i wanted plus a new little digital camera (which my mom still has so she can exchange it for the RED ONE) and a bunch of little stuff. my mom worked so hard on the house, the big dinner… i hope it’s the last time she does it! she wanted to give darren’s girlfriend a proper christmas turkey dinner because they don’t do that in mexico, but it is too much work for 10 minutes of chowing down! next year i hope it’s much simpler. stinky cheese and crackers and BAKING.
oh, the absolute BEST PRESENT IN THE WORLD that i ever received ever in my life, was emailed to me last week. a song. a song written for me, about me, by ROB SZABO. coolest. thing. ever. i’m going to figure out a way to upload/stream it so y’all can hear it!! it’s a REALLY good song! the fact it’s about ME is just a bonus. for me.
Found one! Click here to listen: Donna’s Tune
that was easy and painless! i loves the internets.
okay, health update: i’m still weaning off sleeping pills, and it’s going pretty good! i’m down to 6mg/night, which is less than one pill, and less than i’ve taken in countless years. considering i used to take a minimum of 2 pills and often 3, i am happy with my progress. another 12 weeks i guess, to total freedom! i do forget what it’s like to sleep straight through the night, and hope i get to experience it again someday.
i saw another physiotherapist last week and was given a few more exercises to do here at home. i tried going back to “living well with a chronic condition” classes, but it’s just not a good fit for me anymore. i need to work at home, both by myself and with one-on-one help from my home care. living well is group exercises and i’m not able to do them anymore. plus 10 minutes, 2x/week (”if it’s available”) on the machine i want to use is just not worth the travel and trouble. i need to commit to doing these exercises he gave me regularly!
any movement is difficult, my stiffness and spasticity seems to get worse daily. it’s very painful. getting out of bed in the morning is the worst! baclofen (medication for it) doesn’t help much, plus since it’s a muscle relaxer it weakens your muscles over time, so i REALLY want to take something else. all meds seem to have the same side effects. i take magnesium and serrapeptase as well plus of course i stretch daily but nothing seems to do a damn thing! i wish i could take baths.
fun stuff update: after my last entry i went to see peter katz with thalia, and of course it was fantastic. the following week nancy took me to see the good lovelies, which was also fabulous! sold out show, packed house. then rob szabo sends me a song, and on friday i get to see the polyjesters. so, musically, it has been a great end of the year! my public photo album for peter and the good lovelies (while the link lasts) is over here.
i’m going to put some photos up here later, but for now i just want to publish this because OMG I UPDATED!
I need to update a lot more to make up for all the missed entries and scratch that item off my 101 list. Can it happen? I’m starting to think not, stuff has changed so much. But we’ll see.
I’ve been a little sad lately since I found out some people I knew from that care facility I stayed at earlier in the year passed away. One being Tom, who I mentioned a fair bit. I really liked him. Turns out he died about a week after I left! Mildred, the chattiest of the dementia ladies, also passed on. And others, but I didn’t ask about everyone because it was too depressing. That got me thinking about Elaine, my favourite roommate from the other care facility I stayed at when I broke my wrist, and a quick Google search showed me she died about a year ago. Sigh.
I’ve been frequenting the care facility, visiting Nick. He went into the hospital back in May for the surgery that was supposed to help him, but it just made him WORSE. He was in the hospital up until about a month ago! Now he is living with the permanent long term care residents at the care facility. Once I was able to hire Nancy, we went to see him at the hospital back in October (with a Peter’s Drive In burger and shake, which he was very happy to get!) and a couple times since then. The first time I didn’t know he had moved back into the care facility, so we went to the drive in, which is very close to the care centre, then drove all the way to the hospital, parked, went up… and found out he had left!! So we drove allllll the way back to the care centre and he got a cold burger and melty shake. But at least I know where he is now, and he’s a lot closer, so visiting is easier. He is not, sad to say, in very good shape. His paralysis is getting worse by the day and he rarely even goes on Facebook now, it’s so hard. I definitely have to feed him his burger (or pizza, when we went a couple weeks ago. I’m his supplier) as he can’t lift his arms and has very limited use of a few fingers on one hand, that’s it. He says his lungs and breathing will be next to go, and he doesn’t want to be kept alive by machines, so…
I’m going this week and bringing him Puffs with lotion. He constantly needs someone to wipe his nose with tissue, and the kleenix in those places is rough. And when you’re at meals, it’s the rough napkins that are used. His poor nose is so red and sore. Do you realize how many times a day you lift your hand to scratch/pick/wipe your nose, eyes, ears, etc.? Can you imagine not being able to? I think I have scratched my head/face at least 5 times while typing this paragraph. It would suck beyond belief to NOT BE ABLE TO!
By the way, Nick doesn’t really have anyone. I think I may have mentioned when I was staying there before that the only visitor he ever had was his dad, and he did his laundry for him and stuff. So imagine my shock when his dad died in September. His mom lives somewhere in the US and judging by the stuff she posts on his Facebook, she is in denial about how bad things are with her son, otherwise she’d get her butt up here and be with him!! It makes me so mad to think about it. Last time I saw him he told me he’d had such a rough time with breathing and needing to spend the day in bed that he didn’t expect to wake up the next morning.
I forgot to mention a very important event that happened between my last two entries… my friend Jason got married in September! For realz!
I sure hope they don’t mind me stealing that picture off Facebook.
I’m so happy for them and they are so happy! I need to talk to Jason about an available date for the Polyjesters to perform at a fundraiser for me in the new year. I’ve got a lot of money to raise to go for another procedure! Family and some friends really helped with Costa Rica, so I need to do some real fundraising for this next, and hopefully final, one. I’m going to see them on NYE but I probably won’t get to talk to them about that… it will be mayhem!
I started working on this entry a couple weeks ago, and with some fudging I have managed to make it look like I started it today. Typing on the Macbook is a headache with only one hand. no more caps, i’m sorry, it’s just too hard and takes too long. i can go about pretty quickly if i don’t use caps. faster than the frogpad! but i still want a new one. caps are important to me, i’m usually very anal about typos! new frogpads should be available in march or april. in the meantime i’ve got my eye on ebay for a lefty frogpad!
christmas. it’s a lot of work, isn’t it? i don’t think it’s worth it, in our family! christmas eve i went up to thalia’s and spent the evening with her, her hubby and daughter. lots of cheese, fruit, crackers and yummy food like that. no need for making a big turkey dinner, just lay out the stinky cheese!! i made them watch the polyjesters “are we there yet” dvd from 2002 (i think?) but they didn’t actually sit down until it was past the halfway mark. now they have to watch it again, and pay attention hehe
christmas day my dad picked me up and we drove out to my mom and bob’s, where my brother and his girlfriend were as well. lots of food and presents! i got the 4 in one printer/fax/copier/scanner i wanted plus a new little digital camera (which my mom still has so she can exchange it for the RED ONE) and a bunch of little stuff. my mom worked so hard on the house, the big dinner… i hope it’s the last time she does it! she wanted to give darren’s girlfriend a proper christmas turkey dinner because they don’t do that in mexico, but it is too much work for 10 minutes of chowing down! next year i hope it’s much simpler. stinky cheese and crackers and BAKING.
oh, the absolute BEST PRESENT IN THE WORLD that i ever received ever in my life, was emailed to me last week. a song. a song written for me, about me, by ROB SZABO. coolest. thing. ever. i’m going to figure out a way to upload/stream it so y’all can hear it!! it’s a REALLY good song! the fact it’s about ME is just a bonus. for me.
Found one! Click here to listen: Donna’s Tune
that was easy and painless! i loves the internets.
okay, health update: i’m still weaning off sleeping pills, and it’s going pretty good! i’m down to 6mg/night, which is less than one pill, and less than i’ve taken in countless years. considering i used to take a minimum of 2 pills and often 3, i am happy with my progress. another 12 weeks i guess, to total freedom! i do forget what it’s like to sleep straight through the night, and hope i get to experience it again someday.
i saw another physiotherapist last week and was given a few more exercises to do here at home. i tried going back to “living well with a chronic condition” classes, but it’s just not a good fit for me anymore. i need to work at home, both by myself and with one-on-one help from my home care. living well is group exercises and i’m not able to do them anymore. plus 10 minutes, 2x/week (”if it’s available”) on the machine i want to use is just not worth the travel and trouble. i need to commit to doing these exercises he gave me regularly!
any movement is difficult, my stiffness and spasticity seems to get worse daily. it’s very painful. getting out of bed in the morning is the worst! baclofen (medication for it) doesn’t help much, plus since it’s a muscle relaxer it weakens your muscles over time, so i REALLY want to take something else. all meds seem to have the same side effects. i take magnesium and serrapeptase as well plus of course i stretch daily but nothing seems to do a damn thing! i wish i could take baths.
fun stuff update: after my last entry i went to see peter katz with thalia, and of course it was fantastic. the following week nancy took me to see the good lovelies, which was also fabulous! sold out show, packed house. then rob szabo sends me a song, and on friday i get to see the polyjesters. so, musically, it has been a great end of the year! my public photo album for peter and the good lovelies (while the link lasts) is over here.
i’m going to put some photos up here later, but for now i just want to publish this because OMG I UPDATED!