If you're a Jeopardy! watcher then you've probably seen them have a category from time to time called "potpourri" which means "a little of this and a little that." Today's FAQ post is answering a bunch of questions that I've recently gotten from my readers, so I thought I'd lump them all together in one post.
When you eat, do you tell your helper what you want a bite of, or do they choose?
I definitely tell whoever's feeding me what I want to eat, when I want a drink, etc. The thought of my feeder just using their discretion to choose for me makes me shudder! I have such little control in my life, and eating is such a pleasurable thing (when done the right way). I can't imagine letting someone else decide what I eat/when I eat it. For me, that would be pretty degrating and it would take a lot of the enjoyment out of eating.
Have you considered getting one of those little assist monkeys (like a seeing-eye dog) that can help you out?
I've seen those assist monkeys on TV and I'm actually not quite sure how much assistance they could provide to someone in my position since I really can't move at all, and although monkeys are smart they aren't intelligent enough to be able to help me with my computer, etc.
This question makes me laugh because as cute as those monkeys are, I don't think I would enjoy having one. First of all, anyone who knows me knows that I'm not a pet person. I like animals and think they're cute, but only from a distance. I don't think I'd enjoy owning a pet (but maybe that's because we didn't have very many pets growing up, so I never had a pet that I developed a love/bond with).
And don't even get me started on pet hair, either (which I detest)! I've always found it so gross to go into a house of a pet owner and to sit on furniture that's covered in pet hair, or where you know a pet lives there because of the smell. Or where the person has cats that jump up on table/countertops. Or where the person's dog tries to jump on you, lick your face or sniff your crotch. I know this isn't the case with every pet owner and pet, but I just don't like them!
I was wondering if your sense of modesty has changed over time as you've had to get used to having other people help you with such private things? Has it gotten any easier, or are there things that still bother you?
When I was first injured it was very difficult for me to have people bathe me or see me naked (I'm sure most people can relate to this) and I always asked my mom to leave the room, which was just fine with her because it was uncomfortable for her, too. It didn't seem right to have her around for such an intimate/personal thing. After I left the ICU and went to rehab I quickly changed my thinking and always wanted my mom around when it was time to do my bath because she was the only one who knew me and she was my advocate/ally. I felt like she was really the only person that I could rely on.
Since that time things have definitely gotten easier, and it doesn't really phase me at all to have my caregivers help with my care any more. However, when someone new starts helping with my care (especially if it's someone I personally know) I do feel a bit awkward at as they learn the ropes. But once they learn the way things work it really isn't a big deal.
When I'm in the hospital and have to have surgery or have doctors and nurses care for me it doesn't really bother me to have people see me naked anymore like it did at first. I'm used to it and I know that the hospital staff is used to dealing with medical procedures and seeing naked patients all the time since that's what they do on a daily basis.
Why are you so susceptible to kidney stones as a paralyzed person?
Since I'm not able to stand up and move around like normal people, urine tends to pool in my kidneys and it doesn't filter through them like it does in your average person. SO, that tends to lead to the formation of kidney stones, and in my case the stones that form in my body are infectious stones which are especially dangerous to me. This is why kidney stones are so detrimental to my health.
When you eat, do you tell your helper what you want a bite of, or do they choose?
I definitely tell whoever's feeding me what I want to eat, when I want a drink, etc. The thought of my feeder just using their discretion to choose for me makes me shudder! I have such little control in my life, and eating is such a pleasurable thing (when done the right way). I can't imagine letting someone else decide what I eat/when I eat it. For me, that would be pretty degrating and it would take a lot of the enjoyment out of eating.
Have you considered getting one of those little assist monkeys (like a seeing-eye dog) that can help you out?
I've seen those assist monkeys on TV and I'm actually not quite sure how much assistance they could provide to someone in my position since I really can't move at all, and although monkeys are smart they aren't intelligent enough to be able to help me with my computer, etc.
This question makes me laugh because as cute as those monkeys are, I don't think I would enjoy having one. First of all, anyone who knows me knows that I'm not a pet person. I like animals and think they're cute, but only from a distance. I don't think I'd enjoy owning a pet (but maybe that's because we didn't have very many pets growing up, so I never had a pet that I developed a love/bond with).
And don't even get me started on pet hair, either (which I detest)! I've always found it so gross to go into a house of a pet owner and to sit on furniture that's covered in pet hair, or where you know a pet lives there because of the smell. Or where the person has cats that jump up on table/countertops. Or where the person's dog tries to jump on you, lick your face or sniff your crotch. I know this isn't the case with every pet owner and pet, but I just don't like them!
I was wondering if your sense of modesty has changed over time as you've had to get used to having other people help you with such private things? Has it gotten any easier, or are there things that still bother you?
When I was first injured it was very difficult for me to have people bathe me or see me naked (I'm sure most people can relate to this) and I always asked my mom to leave the room, which was just fine with her because it was uncomfortable for her, too. It didn't seem right to have her around for such an intimate/personal thing. After I left the ICU and went to rehab I quickly changed my thinking and always wanted my mom around when it was time to do my bath because she was the only one who knew me and she was my advocate/ally. I felt like she was really the only person that I could rely on.
Since that time things have definitely gotten easier, and it doesn't really phase me at all to have my caregivers help with my care any more. However, when someone new starts helping with my care (especially if it's someone I personally know) I do feel a bit awkward at as they learn the ropes. But once they learn the way things work it really isn't a big deal.
When I'm in the hospital and have to have surgery or have doctors and nurses care for me it doesn't really bother me to have people see me naked anymore like it did at first. I'm used to it and I know that the hospital staff is used to dealing with medical procedures and seeing naked patients all the time since that's what they do on a daily basis.
Why are you so susceptible to kidney stones as a paralyzed person?
Since I'm not able to stand up and move around like normal people, urine tends to pool in my kidneys and it doesn't filter through them like it does in your average person. SO, that tends to lead to the formation of kidney stones, and in my case the stones that form in my body are infectious stones which are especially dangerous to me. This is why kidney stones are so detrimental to my health.
I have never heard of those "assist monkeys." But the thought of you having one, seriously made me laugh out loud. He would probably just break all your pretty things in your room.
ReplyDeletePlus, they aren't the safest creatures. There have been so many monkeys attacking people incidents in the news. If you did have one, I might be scared to come visit you. And I AM an animal person.
Say no to monkeys. You and me both, sister! :)
Hi Heather-
ReplyDeleteWould you consider an FAQ post about your diaphragm pacer? I'd love to learn more about it.
Thanks,
Jen
Amen to no pets sista ! I've heard very few people say that but pets smell and their hair is gross!,!
ReplyDeleteHi Heather! I cant remember how I stumbled on your blog but I really enjoy reading it and am just in awe of your attitude toward all of the challenges you must face everyday. My question is, it doesnt seem from what I have read that you have nursing help. Yet many disabled people qualify for a certain amount of free help from the state, right? It just seems like it must be a lot of work for your family although I am sure they dont mind. Also, are you able to breathe without the tracheotomy in your neck? God bless!
ReplyDelete