It would seem I have developed an allergy to latex, the stuff in most paints. Or perhaps it's an allergy to the other chemicals that show up when paint is gassing off as it dries. Much like ALS, this is all new ground for me. I've never suffered from this kind of "environmental" allergy. The truth is that I've always kind of brushed this kind of thing off when other people said they had it. Now, in exquisite irony, it's my turn.
I've always felt that these kind of environmental allergies represented something wrong within your body, a body not strong enough to fight off the effects of exposure to chemical gases or other airborne pollutants. If you got sick with any kind of allergies, you just weren't strong enough to take it. I still think that's kind of true, only now it applies to me.
This allergy is new, brand new. I'm almost certain it arises out of a combination of reaction to all the medications I'm taking these days, along with a compromised immune systems. The observation certainly fits the case, my case. ALS has come along with another sideways kind of thing, something nobody warns you about. Here I am worried about a cold virus, and something that's been easy for me to deal with in the past has now become impossible.
The hives were terrible, sufficiently so that my evening caregiver felt I should call an ambulance. The burning and itching on my skin were maddening. I couldn't reach the areas I wanted to scratch. There was no fever, no other physical irregularities. So we, the EMS technicians, the doctor they called on the phone, and my HCA all said to take Benadryl. My HCA even took some money to go to Safeway and get a package.
I took a couple last night at 10:00 PM. I took a couple more at 5:00 AM. I took a couple more at 10:00 AM. It was enough to make me punch drunk and sleepy all day. Those effects have just started wearing off. This is my first lucid moment all day. I'm going to eat something; all I've had today is a couple of pieces of buttered toast. Tonight, when I go to bed, I'm going to take a couple more Benadryl. The itching on my lower back has returned, and the antihistamine really takes it on. I'm hoping to sleep well, with no accidents or interruptions. That's be helpful.
Tomorrow, when someone comes to sand and paint the kitchen door frame, I think it might be wise for me to disappear for a while, perhaps an hour or three. A movie might be a good idea. Then a couple more Benadryl tomorrow night too.
Friday, 29 June 2018
Thursday, 28 June 2018
Another Busy Day
It was so busy yesterday I completely forgot about my blog! It can happen. Yesterday started with my normal Wednesday routine, which includes exercises. These days I find my Range of Motion exercises so exhausting that I need a couple hours of rest by the time my HCA leaves. So a 1:00 PM fnish with home care means I can't get active again until about 3:00 PM.
By the time I was functional, I had to get ready for David's arrival. He was coming to paint the doors and jambs, covering all the streaks and other marks I have made on them over the years. The door to the spare room is living proof that I am unable to navigate a 27 3/4" wheelchair through a 28" space, especially after a glass or two of wine. My room was not quite so bad; it's a 36" door. The same with the bathroom. Still, David repainted all three doors and jambs.
Andrea came over as well, doing a yeoman's job of filling in the many gouges and scrapes I've managed to make over the years. I'm dangerous with a power wheelchair. She found a lot of them, some I didn't even see myself. She filled them very nicely, so smoothly in some cases that I can't even tell where the paint ends and the fill begins.
The biggest job has yet to be done. I'm hoping Todd and Jessica can tackle it when they come over tonight. I've managed to completely smash the right side of the door frame going into the kitchen. the whole thing needs to be replaced. Yesterday Anne took down the existing frame and moulding. I have the new boards. They need to be cut to fit, installed, and painted. I'm hoping for tonight, but understand completely if it has to be split into two different jobs.
All in all, it was enough to make me forget about writing. Today, I have a bit more breathing room. So I am off to the mall to have coffee with a friend. Life is busy for me sometimes.
By the time I was functional, I had to get ready for David's arrival. He was coming to paint the doors and jambs, covering all the streaks and other marks I have made on them over the years. The door to the spare room is living proof that I am unable to navigate a 27 3/4" wheelchair through a 28" space, especially after a glass or two of wine. My room was not quite so bad; it's a 36" door. The same with the bathroom. Still, David repainted all three doors and jambs.
Andrea came over as well, doing a yeoman's job of filling in the many gouges and scrapes I've managed to make over the years. I'm dangerous with a power wheelchair. She found a lot of them, some I didn't even see myself. She filled them very nicely, so smoothly in some cases that I can't even tell where the paint ends and the fill begins.
The biggest job has yet to be done. I'm hoping Todd and Jessica can tackle it when they come over tonight. I've managed to completely smash the right side of the door frame going into the kitchen. the whole thing needs to be replaced. Yesterday Anne took down the existing frame and moulding. I have the new boards. They need to be cut to fit, installed, and painted. I'm hoping for tonight, but understand completely if it has to be split into two different jobs.
All in all, it was enough to make me forget about writing. Today, I have a bit more breathing room. So I am off to the mall to have coffee with a friend. Life is busy for me sometimes.
Tuesday, 26 June 2018
No Food Out
It seems to be becoming increasingly difficult for me to write a blog post in the morning. Most mornings I feel like I have nothing left to say, like I have said it all before, repeatedly. While new losses are all around me, it gets depressing for others to read time and time again how I am losing more and more abilities. I have to remember that this blog is about my journey, a journey which has a lot of difficult changes in it these days.
So here I go, talking about more losses. Today I asked Kabira, my afternoon and evening HCA to take some food out of the fridge for me so I could have it for dinner. Much of what is in the fridge is either too heavy for me to pick up or too far out of reach for me to get to from my wheelchair. If I want to eat, someone will have to get things out of the fridge for me.
The amount of leftover meat sauce, clam sauce and Alfredo Sauce is simply staggering. I've already put one container of meat sauce into the freezer. The Alfredo sauce and clam sauce were mixed together in one big plasticware container; I'll have to figure out what to do with it later. I know I can freeze it, but in what size portions? Tonight will be meat sauce.
I'm tired of spaghetti. I've been eating it for days. When I eat it, as much of it goes on my shirt as into my mouth. It's very difficult for me to swirl it up and shove it into my gob. So tonight I want to have Rotini with sauce. It's here that I made a strategic blunder. I did not ask Kabira to get the Rotini down for me from the upper cupboard where pasta makes its home. Instead I had to use a grabby stick to pull down almost every other package of pasta in order to get the one I want. The problem is that I cannot put any of it back up there!
Fortunately my friend Tonny will be here shortly. He is taking me to Lowe's where I can get the various supplies I need for fixing up the dings and bangs in my walls and doors before Shelby arrives next Sunday evening. I'll ask him to put the pasta back up, where it will happily reside until I disturb it all some other day. At least I'm going to eat tonight; last night I couldn't. No food out.
So here I go, talking about more losses. Today I asked Kabira, my afternoon and evening HCA to take some food out of the fridge for me so I could have it for dinner. Much of what is in the fridge is either too heavy for me to pick up or too far out of reach for me to get to from my wheelchair. If I want to eat, someone will have to get things out of the fridge for me.
The amount of leftover meat sauce, clam sauce and Alfredo Sauce is simply staggering. I've already put one container of meat sauce into the freezer. The Alfredo sauce and clam sauce were mixed together in one big plasticware container; I'll have to figure out what to do with it later. I know I can freeze it, but in what size portions? Tonight will be meat sauce.
I'm tired of spaghetti. I've been eating it for days. When I eat it, as much of it goes on my shirt as into my mouth. It's very difficult for me to swirl it up and shove it into my gob. So tonight I want to have Rotini with sauce. It's here that I made a strategic blunder. I did not ask Kabira to get the Rotini down for me from the upper cupboard where pasta makes its home. Instead I had to use a grabby stick to pull down almost every other package of pasta in order to get the one I want. The problem is that I cannot put any of it back up there!
Fortunately my friend Tonny will be here shortly. He is taking me to Lowe's where I can get the various supplies I need for fixing up the dings and bangs in my walls and doors before Shelby arrives next Sunday evening. I'll ask him to put the pasta back up, where it will happily reside until I disturb it all some other day. At least I'm going to eat tonight; last night I couldn't. No food out.
Monday, 25 June 2018
Energy Crisis
My body is so exhausted and weak today I can barely function, let alone keep my eyes open. I type ever so slowly, an activity at which I used to rather excel. My arms are too weak to pick up my mug of water, too weak to get my dinner out of my fridge, too weak to hold up a fork or spoon. Earlier today I was able to eat sandwiches, but after three halves, my mouth and jaw were too tired to chew while my arms had begun to fail in delivery.
I guess this disease really is killing me.
Only a week to go. It is my hope that my new live-in caregiver will make a dramatic difference in my life. I'm hoping that the activities of daily of life will be eased by a helper, by having someone who can pick up what I drop, put away that which I cannot, help me when I need help.
The truth is that I don't need a lot of constant help. I am pretty good for most things once I get set up. I can do the TV stuff on my own. The only challenge with soing out is the doors, and there are people around often enough to help, although a companion might be better. In fact, while I have been beat all day, I have still gotten things done, like this blog.
Maybe it's the heat. Maybe it's the sleeping pill and a half from last night. Maybe I's still recovering from Saturday's party. There are lots of things that could make me feel this way. Sure, part of it is AL:S, but there are plenty of other things to go around. I just hope I have more energy tomorrow.
I guess this disease really is killing me.
Only a week to go. It is my hope that my new live-in caregiver will make a dramatic difference in my life. I'm hoping that the activities of daily of life will be eased by a helper, by having someone who can pick up what I drop, put away that which I cannot, help me when I need help.
The truth is that I don't need a lot of constant help. I am pretty good for most things once I get set up. I can do the TV stuff on my own. The only challenge with soing out is the doors, and there are people around often enough to help, although a companion might be better. In fact, while I have been beat all day, I have still gotten things done, like this blog.
Maybe it's the heat. Maybe it's the sleeping pill and a half from last night. Maybe I's still recovering from Saturday's party. There are lots of things that could make me feel this way. Sure, part of it is AL:S, but there are plenty of other things to go around. I just hope I have more energy tomorrow.
Sunday, 24 June 2018
Spaghetti Night
It was Spaghetti Night last night. Wow, was it ever Spaghetti Night! We had four kinds of sauce; a clam sauce, an Alfredo sauce, meatballs in tomato sauce, and a meat sauce loaded with lots of good stuff. We had spaghetti and fettucine, with rotini and penne on standby. There was garlic bread and a batch of coleslaw which didn't even make it out of the fridge. There was wine; of course there was wine. We had a few bottles of a delicious Pinot Grigio, and I capped the night with a glass of a fabulous merlot.
This was not all my doing. In fact the only part I really did was take some previously made meat sauce, put it in the slow cooker, add some tomatoes and mushrooms, then set it aside to bubble and get warm. Brad stepped in just about then and put together the coleslaw. I had run out of onions, so Brad made a quick run to Safeway too. He did the meatballs in sauce, cooking the meatballs then putting them in the warming tray and covering them with a simple tomato sauce.
Next up was Tonny. He continues to surprise me with his cooking knowledge and ability. I think he keeps quiet about it to avoid spending the whole evening in the kitchen. He failed last night. First up, he made a terrific clam sauce, generally using a recipe I found on line, while at the same time improvising as he went alone, like all great cooks do. Tonny also got trapped into making the pasta while the Alfredo Sauce was on the go.
It was Todd doing the Alfredo Sauce. I have two seperate recipes for Alfredo Sauce. One is a simple sauce, quick and easy to make, with only Parmesan Cheese. The other uses Cream Cheese, Parmesan Cheese, and Mozzarella Cheese. Needless to say, we made the richest, creamiest, most fattening choice. When I say "we", I really mean Todd. I was coaching from the sidelines.
It's interesting to notice that all the people making food last night were men. The women got to sit, talk, drink wine, and generally relax. We of the stronger sex hefted out bulk into the kitchen and made a wonderful dinner. I am compelled to ask, when does a cook become a chef? I must say there were some pretty inspiring dishes prepared last night, chef style cooking.
I've wanted to do a Spaghetti Night for a long time. I've wanted to have the luxury of multiple sauces, multiple types of pasta, and multiple things on the side. this obvious bounty of conspicuous consumption. It would be true to say I am a "foodie". The only thing is that these days I need help to create this kind of meal. I am so thankful there are friends who will do just that; help me feel like a good host, with wonderful food and wine.
This was not all my doing. In fact the only part I really did was take some previously made meat sauce, put it in the slow cooker, add some tomatoes and mushrooms, then set it aside to bubble and get warm. Brad stepped in just about then and put together the coleslaw. I had run out of onions, so Brad made a quick run to Safeway too. He did the meatballs in sauce, cooking the meatballs then putting them in the warming tray and covering them with a simple tomato sauce.
Next up was Tonny. He continues to surprise me with his cooking knowledge and ability. I think he keeps quiet about it to avoid spending the whole evening in the kitchen. He failed last night. First up, he made a terrific clam sauce, generally using a recipe I found on line, while at the same time improvising as he went alone, like all great cooks do. Tonny also got trapped into making the pasta while the Alfredo Sauce was on the go.
It was Todd doing the Alfredo Sauce. I have two seperate recipes for Alfredo Sauce. One is a simple sauce, quick and easy to make, with only Parmesan Cheese. The other uses Cream Cheese, Parmesan Cheese, and Mozzarella Cheese. Needless to say, we made the richest, creamiest, most fattening choice. When I say "we", I really mean Todd. I was coaching from the sidelines.
It's interesting to notice that all the people making food last night were men. The women got to sit, talk, drink wine, and generally relax. We of the stronger sex hefted out bulk into the kitchen and made a wonderful dinner. I am compelled to ask, when does a cook become a chef? I must say there were some pretty inspiring dishes prepared last night, chef style cooking.
I've wanted to do a Spaghetti Night for a long time. I've wanted to have the luxury of multiple sauces, multiple types of pasta, and multiple things on the side. this obvious bounty of conspicuous consumption. It would be true to say I am a "foodie". The only thing is that these days I need help to create this kind of meal. I am so thankful there are friends who will do just that; help me feel like a good host, with wonderful food and wine.
Saturday, 23 June 2018
I'm Having Trouble Getting Started
Have you ever let something get in your way such that it stops you from even starting something you want to do? I have always been a bit like this. I might need a part before I can begin working on my boat. In fact almost all boat cleaning trips started with a stop at Canadian Tire, and more than likely a stop at the pub for lunch. And a beer.
It's becoming more problematic of late. I want to clear off my dining room table. There's nto actually a lot of clutter; just enough that it will get in the way of tonight's spaghetti party. It's funny. After writing that sentence, I stopped to clear a couple of pieces of scrap paper off the table. Then I dropped one and had to pick it up; no small task even with a grabby stick. Then I noticed how tired my arms were, so I got my lap desk instead of typing at the table.
As of yet, my table clearing efforts have been limited to those couple of pieces of paper scrap. I'll commit myself to doing more after I finish this blog, and take a bit of a rest. Even typing wears me down these days.
I really haven't changeed all that much. I have just become more of what I already was. They say this happens to most of us as we approach death. The imminence of the Grim Reaper does not suddenly change us into a better person. It simply amplifies the person we already are. Like me and letting things get in the way of starting what needs to be done.
It's becoming more problematic of late. I want to clear off my dining room table. There's nto actually a lot of clutter; just enough that it will get in the way of tonight's spaghetti party. It's funny. After writing that sentence, I stopped to clear a couple of pieces of scrap paper off the table. Then I dropped one and had to pick it up; no small task even with a grabby stick. Then I noticed how tired my arms were, so I got my lap desk instead of typing at the table.
As of yet, my table clearing efforts have been limited to those couple of pieces of paper scrap. I'll commit myself to doing more after I finish this blog, and take a bit of a rest. Even typing wears me down these days.
I really haven't changeed all that much. I have just become more of what I already was. They say this happens to most of us as we approach death. The imminence of the Grim Reaper does not suddenly change us into a better person. It simply amplifies the person we already are. Like me and letting things get in the way of starting what needs to be done.
Friday, 22 June 2018
No Arms For Organization
There are days, lots of days, when my internal monologue begins with "I don't know how much more of this I can take'. Then, often to my own distress and dismau, homecare gets me up, gets me dressed, puts me in my wheelchiar, and I take more of what I don't want to take; living with ALS.
Today it has been especially difficult. My arms, especially my left arm, have been very weak and unwilling. There is a lot of bone and muscle pain in my left arm. I was weak and uncomfortable enough that I told my HCA to skip my arm exercists and only do 3 and 3 on my legs instead of the normal 5 and 5 exercise rotation.
Just now I had to stop and take a 15 minute break from writing, so I could rest my arms.
This kind of a day wreaks all kinds of havoc on any plans I might have made. I wanted to organize my freezer a bit today, the same with my fridge. With various home care workers and friends taking things out and putting them back willy-nilly, I now have no idea what is in which. I run the risk of buying doubles because I don't know what I have. Or what's worse is that things go bad because I cannot see them in the back of my fridge.
I'm going to do the best I can today, but first I am going to the grocery store for a couple of things I need for my Spaghetti Party tomorrow. About a dozen or so of my friends are comng over. I will make various pastas and sauces. We'll play games afterwards. I'm hoping to get organized enough to make it all work.
Today it has been especially difficult. My arms, especially my left arm, have been very weak and unwilling. There is a lot of bone and muscle pain in my left arm. I was weak and uncomfortable enough that I told my HCA to skip my arm exercists and only do 3 and 3 on my legs instead of the normal 5 and 5 exercise rotation.
Just now I had to stop and take a 15 minute break from writing, so I could rest my arms.
This kind of a day wreaks all kinds of havoc on any plans I might have made. I wanted to organize my freezer a bit today, the same with my fridge. With various home care workers and friends taking things out and putting them back willy-nilly, I now have no idea what is in which. I run the risk of buying doubles because I don't know what I have. Or what's worse is that things go bad because I cannot see them in the back of my fridge.
I'm going to do the best I can today, but first I am going to the grocery store for a couple of things I need for my Spaghetti Party tomorrow. About a dozen or so of my friends are comng over. I will make various pastas and sauces. We'll play games afterwards. I'm hoping to get organized enough to make it all work.
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