As Lasciel says, we can handle it. Most of us are or have been married or had a live-in GF at some point, so we can’t exactly go “oh, my virgin ears!” The only thing new here is that, seeing as how your arms are strictly decorative, someone else has to insert and remove your tampons for you. But we coulda figured that part out for ourselves. 
I’ve never used a CPAP, no. Towards the end of weaning off the ventilator, I used it only at night. Eventually, I didn’t need any breathing assistance at all, night or day, and it’s been that way ever since.
As usual, Ambivalid and Broomstick already did a bang-up job of answering this question exactly the way I would have.
I will definitely continue to employ caregivers when (if) I get married. I probably won’t have someone stay overnight anymore, unless my husband is away on business or something. I don’t need much overnight; I just need someone close by for emergencies. And I imagine there will be times on weekends or evenings where we’ll prefer that my helper leave early or just make herself scarce: I don’t imagine her sitting with us over candlelight and wine, feeding me and making small talk with my husband. :dubious:
As for bathing, I imagine there will be times when my husband will help me in the shower…but I’m thinking that’ll be less of a practical thing and more of a foreplay thing. 
Basically, I’m expecting that my carers will make my marriage a pretty normal one, where my husband isn’t in charge of my substantial daily personal care, but will definitely bring me soup and trashy magazines when I’m sick.
You could suggest…
A movie!
The beach (I have a special wheelchair for this)!
A museum!
A concert!
A pool party at my place!
Coffee!
Dinner!
Drinks!
A walk!
A book club!
Shopping!
Skydiving!
These are all things I do with my friends. There are sooo many things I can do; you’re just frozen mentally by beginning the thought process with all the things I can’t do. But unless you have an extreme active lifestyle where the only things you do on evenings and weekends are lift weights and run ultra-marathons, there’s likely a broad swath of common interests that you and I could engage in together.
Ouch. Low blow, dude. Low blow.
So what’s that like? I have this mental picture of the wheelchair equivalent of a fat tire bike, is that what it is? Big tires so you can go through the sand?
Does it work well on snow too?
Absolutely. My dad and brothers all know how to cath me, transfer me to and from my chair, get me in and out of my van, and feed me (though my brothers suck at that last one). But I would diiiiieeee if there was, like, a nuclear holocaust, and one of them had to bathe me or do my bowel program. Gah!
I’ll probably feel the same way about my (alleged future) husband, though he’ll obviously need to know how to do both of those things in a pinch, so he’ll have to do them at least once for practice. But, in general, I want my body to be a sexy thing that he gets to enjoy, not a chore that he has to take care of.
Ha! Girl balls! Right on–I will totally take that compliment! See, I don’t hate being called remarkable. Just so long as it’s based on something I’m actually doing, and not on an assumption about how “the poor people” in wheelchairs are. Thank you!
Pretty f-ing cool! I’ve heard diving is a super cool experience for quadriplegics–I’m really looking forward to the freedom of weightlessness. I wonder how it will feel, since as I already mentioned, I normally feel like my body is a weight that’s pulling me down…
Sweet! Thank you for those suggestions–I’ll have my brother (my tech guy) look into them.
Hahaha! I love that story about your brother. Bet he slept with one eye open after that and never again assumed what you could or couldn’t do.
I don’t know that it’s sexiness I’m maintaining, but it’s always been important to me to look normal (as normal as possible). I don’t usually leave the house without my hair or makeup done, and I wear fashionable clothes. I see some quads who wear sweats or weird poncho things out in public or (dear maude) have their leg bags strapped to the outside of their pants. I don’t know their personal reasons for doing this, and whether it’s a necessity for them or not, but I just know I don’t want to be like that. It’s alienating enough to be in a chair like mine; so I try my best to look like a normal girl who just happens to always be sitting down.
So that means I wear: 1) designer jeans that I have altered (sometimes removing the back pockets–you’re not going to see them anyway–to prevent pressure sores, sometimes buying them long/loose and then hemming them to the right height/waist band when seated, etc); 2) cute shoes (sometimes heels, but more often sassy flats); and normal/sexy underwear and bras (though I generally stay away from thongs or underwire).
LOL. I’m gonna steal this, if you don’t mind, for the next time someone reaches out for a handshake upon meeting me: “Nope, sorry. They’re stictly decorative.”
First of all, thanks for this, it is very informative and courageous of you and calls for all kinds of respect.
Before I left my hospital job, I cared for many patients such as yourself, some of them bitter to the point of screaming at me to get the hell out, and some glad to see me to get their incentive spirometry, aerosol treatments and “quad-coughs” after their chest percussion.
So, speaking as a former respiratory therapist, I just wanted to apologize to you if at any time you felt your therapist was in a rush or didn’t give you all the care you needed.
It’s no excuse, but many times your RT isn’t only assigned to your floor, but a couple of others as well and that isn’t fair to either of you. As a quadriplegic, you are a high risk for pneumonia and you deserve all the time necessary to keep your lungs clear. Rehab should be an only assignment for any RT and I had always recommended that this should be one area of a hospital not rushed.
Another reason for the lack of good care is documentation. Before I left the profession, each therapist had a COW (computer on wheels) which were required to be taken into the room where charting could be done. But here too, the patient was left short-changed, because more often than not, the therapist would start one patient’s aerosol, and then run and start the next patient. I am sorry to say I was one of these.
Thanks once again for this very frank discussion, umkay, and this entire thread should be mandatory reading for anyone involved in any kind of patient care.
It is good to have you as a Doper friend.
Bill/Quasi
I don’t think I have any supersense of taste, if that’s what you’re asking.
Primarily, I want to look good. I’m disabled…but I’m also very, very vain. 
Also, I just don’t have the appetite I had when I was AB. Lastly, thought it’s not my primary motivation, weight gain has even more deleterious effects on a quad than on an AB–not only would it be harder for my helpers to take care of me, doing transfers and dressing me and such, but I’d be at higher risk for pressures sores (more weight=more pressure) and sleep apnea, not to mention diabetes/heart disease/various other AB ailments.
I’m content. It’s rare that I cut myself off while I still want more. Though I will do that if I notice my weight climbing.
Pizza! Totally generic, I know, but it’s the truth. Plus, it’s pretty easy to feed someone pizza (once the cheese has cooled and–what’s the word–congealed?).
Just another voice chiming in to say thanks for answering the questions of the masses.
I have a first cousin who had polio when he was nine and has been in a wheelchair ever since. For many years, he had the full use of his upper body, but post-polio syndrome has, over time, robbed him of the use of all but his neck/head and a bit of movement in one arm. Reading your answers here has given me more insight into the considerations of his daily life than I’d have had the courage to ask about, ever. One doesn’t talk about bowel programs at family picnics. (In my family, anyway.) It’s been illuminating.
BTW, he is now retired, but for many years was a personal and family counselor.
I’ve been reading this thread (and the devotee one) since the very beginning and have found it to be very interesting and informative. I haven’t piped up with a question yet because others have been doing a pretty good job of asking questions that hadn’t even occurred to me. But I just thought of one, and although I may be seen as a party-pooper, here goes:
Are you getting at all tired of answering all the questions? Are you hoping the thread will trail off at some point so that you don’t have to announce that you’ve had about enough of the seemingly endless and boundless questions?
Don’t get me wrong, I love this thread and will read it for as long as you’re willing to participate in it. I’m just wondering if maybe you weren’t expecting such a voluminous response and are only continuing out of a sense of obligation.
If and when that time comes, I suggest you just tell us to get any final questions in before a certain cutoff day, and you’ll conclude this interrogation when those are addressed. Dopers can be an inquisitive and relentless lot, but I’m sure we’d all understand that all good things must come to an end. If I’m off-base and you’re enjoying this thread enough to continue indefinitely, I apologize, and am glad you feel that way.
And I think I can speak for everybody in saying that we hope to see you around in other threads for a good long time! 
My thoughts on the ADA are too many to write here. But I will say this: 1) I’m incredibly grateful for it, but 2) it’s not a perfect piece of legislation, but 3) I’m disgusted by lawyers and their disabled accomplices who scam the system, squeezing every red cent out of the letter of the law, while ignoring the spirit of it (and making business owners hate disabled people).
Here’s an excellent article if you’d like to study the issue more.
Dignan, Ambivalid, Broomstick, Blinkie, or etv78–feel free to chime in here if you’ve got something to add.
With regard to ADA abuse-AMEN sister! The lawsuits tar the valid reasonable suits with a braod brush of abusive/silly.
Thanks, umkay. I agree with her, and etv78 on the ADA thing. I heard a radio story about someone scamming businesses that weren’t compliant with ADA. It seemed like really bad form. I appreciate the accessibility in our society, but I understand that it isn’t going to be perfect, and there are some things I cannot do. If I can improvise, I do. If I can’t, then that’s the way it goes.
Just to further clarify…a suprapubic catheter is a ‘permanent’ access into the bladder through the abdominal wall; it’s made of plastic (or silicone or whatever).
A Mitrofinoff (also permanent) is a surgical procedure in which your appendix is used to fashion a conduit from the abdominal wall into the bladder. With a Mitrofinoff, you insert a straight catheter into the tiny hole in your abdomen and feed it into the bladder (via the appendix) to drain the urine.
If, when looking at the device, you see ‘plastic’, it is a suprapubic. If you see a small fleshy hole, it’s a Mitrofinoff (although many these days use the umbilicus as the entry point, so it’s virtually invisible).
mmm
You’re more than welcome. Please post a thread after your first diving experience.