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3:40am
February 5, 2015
Dear Anna and Ron,
Thank you so much for the backpack Ron made. I wasn’t sure what I’d do with it. Then they gave me an oxygen canister that was larger and made me walk lopsided and bash into things on the normal shoulder strap. Ron’s backpack was the perfect solution, and I have already used it and felt way better for doing so.
I know you guys put a lot of thought into what you sent me and I wanted to thank you for that. I also know you have a knack for sending me things none of us knows the use for, until suddenly a use becomes glaringly apparent. Thanks for that too.
I love you both. Ron, I wish you could be here to read this. i just have to hope that wherever you are, whatever you are now, you can still feel my gratitude for so many things I can’t even name them (though that doesn’t stop me from trying – now that you’re a writer, you should appreciate that impulse, at least.
Love,
Mel
[Image description: A red backpack with leather or faux-leather parts, handmade by my father, with a tag saying “An Original by Ron Baggs”. My father made a lot of backpacks, this is just one of them, and the perfect size for me.]
3:39pm
August 19, 2014
Annnnnd with a great deal of effort, I got the cannula hooked up.
(The problem is I have to switch back and forth between hooking the oxygen concentrator tube to the bipap tube, or hooking it to the nasal cannula. And doing that involves hanging off the bed at an uncomfortable and painful angle, or standing up. Both of which are difficult and painful right now. But yay oxygen!)
1:56pm
July 4, 2014
interacting-with-you asked: Are you sick? In your picture if that's you it looks like you have the breathing thing on that hospitals use. Anyway if you are I hope you are okay and get well (:Not sure which picture. I use a bipap sometimes and oxygen other times, and both of those are completely normal for me. I have bronchiectasis, which has gotten worse with multiple aspirations (which always lead to pneumonia) over the past several years, so I sometimes need supplemental oxygen. So sometimes you’re going to see me with a nasal cannula, which is one of those little tubes that goes into your nose just barely, and sends oxygen into your body. And I have both central and obstructive sleep apnea (central is where your brain forgets to tell your body to breathe, obstructive is when your airway gets obstructed regularly in your sleep due to structural problems), so you’ll see me with a bipap at times, which has a big mask that goes over my nose and mouth. I also sometimes need the bipap while awake when I get too weak to breathe on my own comfortably, but fortunately since starting steroids that has become very rare.
So I guess I am sick and I’m not sick. Because I have chronic illnesses, but I don’t have a cold or something like that.
4:00pm
June 9, 2014
craaaap I forgot my oxygen
And my lungs are acting up.
And the cab company is busy, so even though I don’t need a wheelchair cab there’s a long wait.
There’s no actual danger here, I’m not going to die or something, I’m just extremely uncomfortable and want to be in bed, with oxygen, rather than sitting up waiting for a frigging cab all day.
Argh! (OTOH, amazing you could even forget your O2?)
Not that amazing – I don’t need O2 full-time anymore. My lungs have been recovering in the past month or two, so that I only need it sometimes. So I only sometimes bring it with me places, and I was in a hurry this morning, and… things got out of hand trying to bring all the needles and everything too so yeah.
2:32pm
June 9, 2014
craaaap I forgot my oxygen
And my lungs are acting up.
And the cab company is busy, so even though I don’t need a wheelchair cab there’s a long wait.
There’s no actual danger here, I’m not going to die or something, I’m just extremely uncomfortable and want to be in bed, with oxygen, rather than sitting up waiting for a frigging cab all day.
3:40am
June 9, 2014
I’m not going to pretend that I don’t want to see TFIOS, because I really really do. I want to be excited to see my cancer being represented on screen… But…
A. I don’t want to cry by myself in the theater during the WHOLE THING
B. I don’t want to see people dressed as Hazel for Halloween.I’m terrified of going with my (legit) oxygen tank/cannula and cane, and having people assume that I either have cancer, or am dressing up, neither of which is accurate. (I have bronchiectasis and adrenal insufficiency.) The scrutiny has me afraid to go.
Are you afraid of them thinking that in itself, or what they might do to you as a result of thinking that?
I’m afraid of being approached or laughed at or any sort of reaction really at all.
I’m worried someone will think your tank is a prop and start messing with it. Which is rude even if it was a prop, but there you go.
Ew. I hadn’t thought of that. That’s even worse.
1:43pm
December 16, 2013
Got a blood gas. Slightly high CO2 (49), oxygen 91%,while on 2 liters of oxygen. So I was found to still need the oxygen. And they think some of my sleep problems may be elevated CO2, which keeps showing up.
7:50am
June 25, 2013
If I have time which I might not, I’ll ask my doctor today, but…
What does it mean when your oxygen level isn’t that low. I mean borderline low but not terrible as long as you stay on oxygen, but…
You feel a constant icky sensation in your lungs. That feeling you get when you hold your breath and your body is screaming for air.
And…
Increasing your oxygen level solves the problem even though technically your pulse ox isn’t showing that dramatic a change.
If it helps, I’ve got bronchiectasis and asthma and central/obstructuve sleep apnea and frequently aspirate stomach contents and then get pneumonia. And I have neuromuscular problems that sometimes affect breathing if I get weak enough. So I often breathe too shallow. And I make a lot of phlegm and spend a lot of the day coughing it up.
But I haven’t aspirated recently. The only thing that I’ve felt like recently is like my lungs feel really weak, sometimes I’ve needed to use the central apnea settings on my bipap while awake to assist my breathing. Probably a UTI interfering with the neuromuscular condition, but I can’t be sure.
Anyway returning my oxygen up a notch has made the sensation partly go away, Even though my oxygen level isn’t actually that different and was never that low as long as I kept the oxygen on, even at the prior setting. So why would upping the oxygen even help?
My lungs still feel cruddy, mind you, just not quite as desperate. Idk what’s going on.
12:13pm
May 19, 2013
The good news is I’m feeling better after the nebulizer treatment.
And that the antibiotics have been started already.
The not so good news is my phlegm, which I can see plenty of, now that the nebulizer is helping me cough it up, is already green and smelly. How can this happen in twelve hours??? I’ve already taken photos for the doctors if I need to see one. No I’m not posting them. Even I have limits.
I really hope this doesn’t turn into full fledged aspiration pneumonia again. That would suck donkey balls.
I’m concerned how fast I’m getting symptoms. That often means something about how bad it’s going to be.
But I do at least have oxygen. I didn’t have that the last several infections. And that can be a huge help. In the hospital a lot of what they did was give me lots of oxygen, plus the antibiotics. So I’m getting those at home. Maybe I won’t need the hospital. I hope. Depends what the antibiotics do for me.
10:13pm
May 6, 2013
Went to a friend to test out the tube feeding backpack. She took a picture of the backpack and the oxygen on my chair. :)
10:06pm
May 6, 2013
This is a video of my oxygen compressor, making both its regular sounds and the sounds it makes for filling oxygen tanks. Put up because my friends think it sounds very steampunk. The top part fills oxygen tanks and the bottom part makes oxygen out of air, and sends it to me through a tube, and sends the rest to the top to fill the tanks.
3:23am
April 24, 2013
[Photo: On the floor me sitting with an oxygen tube coming out of my nose, and a GJ feeding tube coming out of my stomach/intestines. Behind me are the IV pole with my feeding pump, and behind that the oxygen concentrator is visible mostly as a silhouette. All of this at a very strange camera angle with bad lighting. Two photos, one with the stuff behind me more visible, one with me more visible, otherwise mostly the same.]
It was really, really hard to get any possible way to take a picture of all these things given the iPod touch had to be held in my hand, and the positioning of the objects, and the apartment, and the lighting this time of night. So be glad I could get these three things in the same shot at all. Hence the strange camera angle.
So on to the story:
I’ve had an electronic implant to help me urinate, for years. Just recently, I ended up needing a feeding tube and oxygen. I’m not going into the whole story, as it isn’t relevant.
So my friend, also disabled, came over to visit after I got home from the hospital. Partly to see me. Partly to geek out on my assistive tech.
I commented that I am turning into more and more of a cyborg as time goes on. And that I feel sort of steampunk.
She agreed that all the tubes coming out of me these days (two branches of a feeding tube, one to my stomach to drain stuff out one to my intestines to put stuff in; plus the oxygen tube) seem very steampunk in some way.
Then she discovered that my oxygen concentrator even sounds steampunk. It makes these whirring and hissing noises constantly.
Of course, she doesn’t know the half of it. When you turn on the top half of the oxygen concentrator (used for filling canisters instead of sending air to me through a tube), it makes this intense WHUMP WHUMP WHUMP noise.
Fey, as usual, is taking the technology fine. I’ve found that cats in my life are far less frightened by new technology than dogs are. It may freak them out at first – Fey always hisses at new stuff – but they rarely seem to develop the kind of lasting fear that many dogs do. I don’t know what that says about cats and dogs. Poor Billie Jean, I think if she still lived with me she’d be a permanent nervous wreck. She couldn’t even handle the hospital bed.
Anyway. For some reason I find the cyborg/steampunk aspect of all this hilarious.
And I think many nondisabled people would be horrified by the kind of jokes I and the disabled people I know make about things like this. To them, disability is supposed to be Deadly Serious All The Time. But I have enough serious stuff in my life I need something to laugh at. And I just don’t see disability as out of bounds for humor the way some people do.
Plus I really do see a lot of disabled people as real live cyborgs. I first heard of that when I visited MIT and I love the idea. Because it’s true. Many of us are part flesh part machine. And that’s a really cool thing.
Unfortunately a lot of people who are into science fiction cyborgs would be horrified by this idea. Because they see disabled people as beneath ordinary people. And so the idea that disabled people are enhancing ourselves by becoming cyborgs is totally out of the question to them. The only real enhancements are to people who aren’t already disabled.
And I remember a poem I heard by Connie Panzarino, about how she could kiss, or perform oral sex, without coming up for air, due to her ventilator. And that’s utterly cool. But disabled people aren’t allowed to have utterly cool elements to our assistive tech. That’s reserved for nondisabled people.
People with feeding tubes can eat and talk and move our hands (provided we can talk and move our hands) all at once, and that’s pretty cool too. Without our mouths full at that.
So many sci fi fans can’t stand the idea that disabled cyborgs can have abilities most people don’t have, and not just replace nondisabled people’s abilities. They see our assistive tech as always being an inferior replacement for their own abilities that we lack. And it’s not. Sometimes it gives us abilities they don’t have, whether large or small ones. My feeding tube gives me a kind of freedom I never expected to have. Eating is easier now. Even easier than it is for the average person, aside from some obnoxious side effects. But the actual act of eating is immensely easier. You just plug the tube in, turn on the pump, and forget about it until you run through your bottle of food. It takes longer but it takes no concentration at all. I’m eating at the same time as I am writing this and I am not even thinking about it.
They generally (with a few exceptions) see cyborgs as nondisabled people with mechanical or electrical add-ons that make them have superior abilities to the average nondisabled person.
So they’d argue that we are disabled so it doesn’t count and our add-ons replace standard abilities we lack so it doesn’t count. And a lot of other technical details. None of which are necessarily actually true. What seems to be at the bottom of it is that disabled people are inferior to them and therefore we shouldn’t be going around interfering with their dreams (or nightmares) of a future where ordinary people can have technological superpowers.
Of course you get the bionic woman and Darth Vader and some other exceptions. So we are in there to some extent – usually as disabled people whose assistive tech gives us abilities far beyond the average person. They rarely of course come up with the realities, like being able to eat without thinking or using your mouth or hands. Or being able to kiss or (etc.) indefinitely without coming up for air. Or being able to change our height on a whim. Or other things many disabled people can actually do. Because that would require actually getting to know us.
And when we do end up with a huge advantage, they tend to feel threatened by us rather than the fascination they show for our fictional counterparts. They don’t see it as fair that a disabled person could surpass them through our technology – they’d rather our assistive tech always remain a poor substitute for the abilities they already have. And I don’t know quite why that is but I’m sure again it has to do with us being supposed to be inferior, in the end. Because that’s what most of their uneasiness around real-life cyborgs comes down to.
Wow I didn’t think I’d end up writing something this long. Also – only call someone a cyborg if they’ve given you permission. It can feel dehumanizing to some people and many disabled people would never identify with that word in a million years even if most of their body is kept operating through assistive technology.
But I love to use that word, at least jokingly, on myself. Because it gives a twist to my technology that most people aren’t expecting. They want to see tragedy and ‘cyborg’ suggests enhancement.
It also is more accurate to my feelings about the technology I use. I use, off the top of my head (some full time some part time some rarely at all): An electric wheelchair, a hospital bed, a Hoyer lift, a communication device, a bipap, oxygen concentrator and portable tanks, a feeding tube, a feeding pump, a tube to drain my stomach, a bidet, and an Interstim implant to aid urination.
Some of those make my life easier. Others have literally made the difference between life and death. And all of them I have loved and welcomed. Everyone expects disabled people to see these things as tragic and confining. But many of us see them as tools for freedom and for life itself. And by the time I get them, I’ve long since gotten over any bad feelings about them. By that time, I welcome them as life changing in a near-completely good way.
And that’s why cyborg is a term I like. It suggests something that enhances life and gives you new abilities that you otherwise wouldn’t have. And I especially use it for things that are either inside my body (like the Interstim implant and the tubes) or connected to it for long periods of time (like the oxygen or the bipap). But it’s possible to use it for other things too, depending on how far you stretch the word.
I wish sci fi fans would embrace disabled people as everyday, present-day cyborgs. I also wish they’d embrace our more everyday enhanced abilities – kissing without having to come up for air, and other things you really have to know disabled people well, to figure out. As well as not acting threatened and crying foul when our technology-enhanced abilities greatly surpass theirs in a major area.
None of this is exactly a big thing for disability rights. As in, if all of what I wish, came to pass, it wouldn’t be one of our major achievements. I have no illusions about that. But it would be nice if we were understood and recognized and welcomed into the realm of cyborgs, by the sorts of people normally interested in this stuff. :-)
And I love the idea that all these tubes and noises and stuff seem rather steampunk, even though they’re partially electrical. That’s just cool, however much the era involved would’ve been awful (and deadly) to me in reality.
10:26am
April 16, 2013
Trying to get used to breathing on this weird setting where it spurts air into my nose. The canister is too small to use on a continuous setting. But this is weird. My oxygen level seems to be okay though (96) so for the moment something must be going right. It keeps making this strange noise when it spurts out though. I’m not normally a nose breather so this is taking some concentration to use, since it requires breathing on a certain timing. I don’t think I like it at the moment, but it works, so it’s not like I can’t do it, it’s just annoying.
5:39am
April 16, 2013
This is my weird oxygen machine, since I had to get up to burp my g tube three frigging times in a row anyway. And Fey is in front of it yowling because I’m moving around.
(After I started taking precautions that prevented a lot of other aspiration, around 4-6 in the morning is always when I aspirated. Now I’m learning why. Apparently my body produces an ungodly amount of gas and bile and stomach acid at this time for some reason and its hurting like hell tonight without all those IV pain meds from the hospital and the nurse coming through to burp it all the time. That’s why I’m up right now instead of sleeping like I want to be.)