Well, you say that now, but you don’t know about my temper. Or my controlling nature. Or my selfishness. 
But, seriously, I know that it will take a really special guy to marry me. I’m not downplaying the good things I bring to the table, but I don’t blame the guys who’ve broken up with me over the chair. It’s a pain in the @ss, and I very much doubt that I’d have the patience to deal with it if I didn’t have to (like, if the situation were reversed).
Huh. I’d imagine that once they’ve received that much medical training, you wouldn’t have to give directions. Just “hey, looks like Ol’ Flo’s in town again.” nod vaguely in crotchal direction “Do your tampon-inserting thing, will ya?”
Well, your first question is really two questions: What might someone in my position require? And what do I require?
The answer to the first question is a long list that includes pain medications, anti-spasmodics, antibiotics, blood pressure medication, medicine to combat bladder spasms (i.e. accidents), and depression or anxiety drugs (not all of which are prescribed to treat depression or anxiety–some are used to lessen neuropathic pain). And there are probably more that I’m forgetting.
The answer to your second question: I have no sensation below my neck, so I don’t need the regular pain managment that an incomplete might need. My paralysis is flaccid, so I don’t have an issue with spasms interfering with my life. I do take antibiotics if an infection, such as a UTI, is suspected. I do take blood pressure medication whenever AD kicks up, but this is not a daily occurrence. I haven’t needed a bladder spasm medication in years. And I don’t and haven’t taken any drugs for neuropathy or mood (though there’s obviously not a darn thing wrong with doing so if you need them).
Missed this before:
Don’t call other members names in this forum, use the Pit, please.
“The hospital? What is it?”
“Well, it’s a big square building with patients inside. But that’s not important right now.”
Already have The Shins, will check out the others. 
I like concerts! The Hollywood Bowl is my fave venue–super hip and super accessible.
Did you happen to catch The Police there a couple of years ago?
Inconceivable! 
Explained in post #204 on page 5. And, lights out, definitely.
I saw Henry Mancini at the Hollywood Bowl years ago, great show!
Would you ever consider showing up at a Dopefest?
Do people like going to concerts and sporting events with you because of good parking and good seats, or are the seats not that good? I know the accessible seats at our stadium are sort of 50/50…they’re just above the good seats but a AB person could do better.
My date was 4/29/00, so I just recently ‘celebrated’ my 12th anniversary.
As far as the ASIA scale, honestly I’ve never paid attention to that at all. I’m sure I was ‘officially diagnosed’ when I was first in the hospital but whatever it is it has to be at the very bottom (or top) of the scale-whichever end represents having the most sensation.
Just having sensation, without any movement, is definitely a mixed bag. While I absolutely am very thankful that I was able to retain my sensation, being able to feel everything in a paralyzed lower body can be hell on earth at times. Take my extremely atrophied legs and butt, for example. Due to the fact that I have such major atrophy, combined with my natural leanness, I have no butt cheeks. No muscle, no fat, no nothing; basically just skin and bones.
Well, slowly over time, due to my active lifestyle and the fact that I had no natural protection in the form of butt cheeks to absorb all the impact on my ass, I developed puncture-like wounds that wept and bled and were extremely fucking painful.
Now it’s important to draw the distinction here between pressure sores and what I dealt with for so long on my ass. While similar in a way in that they both are due to pressure, they are opposite in the sense that pressure sores are the result of tissue death happening when blood can’t get to it-due to prolonged sitting or lying; while my problem was the result of impact-trauma to the skin and small remaining amount of tissue on my butt due to the lack of a protective layer.
These wounds started to develop about 4 years into my life as a paraplegic. There was a lot going on ‘just below the surface’ for a long time before it got to that point, however. I just wasn’t aware of it. I was a newbie, as far as being a crip. But once they started, I really had a problem on my hands (I really had no idea). Over the course of the next year, I visited with regular doctors, dermatologists, physiatrists and even a plastic surgeon all in my attempt to address and treat this issue. All of them came up with no solution. The plastic surgeon, with whom I was exploring the option of surgery to implant “butt implants” that would give me the fake butt cheeks I was naturally lacking, ended up declining the surgery due to the fact that I had “too little tissue in the area to ensure proper healing”. :dubious: Well, if I had more tissue in the area, I wouldn’t need the stupid surgery!
Anyway, out of desperation and absolute necessity I wound up devising a solution: making my own butt cheeks. It took a while to work the kinks out and make them ‘perfect’ but I ended up using medical grade adhesive pads directly on the wounds, covered with a thick layer of medical-grade soft gauze; all heavily taped down all around with hypoallergenic medical tape. And whoila! I had butt cheeks! And it worked! My wounds stopped progressively getting worse. That, in and of itself, was a godsend. Total cost of (medical-grade, so prescription, duh) monthly supplies: $800. I had a Mercedes payment taped to my ass.
So every single day-without fail-for the next six years, after I got out of the shower I wheeled right to my ‘butt supplies’, all laid out and ready for me. All in all it took me about 30min; once I got real good. When I was going and showering at the gym, I would bag up all the needed supplies and a mirror for that day and bring it with me, where I would set up camp in the little handicap shower in the locker room.
I really got to hate the routine. If I ever went swimming, at a beach or pool, I’d have to change my pads an extra time; they couldn’t get wet. Yet one more strike against spontaneity. But I had to; if it wasn’t for my almost neurotic adherence to my self-care routine here, I know beyond a shadow of a doubt I would have wound up in the hospital a long time ago.
Finally, after years of this routine and having learned how to better live as a paraplegic-as well as my wounds being very much healed-I felt that it was an appropriate time to cautiously try out some time without the pads. At first it felt alarming; I felt naked and exposed. But I wasn’t suffering. I wasn’t hurting. I was cautiously optimistic.
That was a little over a year ago and I’m still butt-pad free. I do keep the (fucking expensive) supplies at hand just in case: my tissue is still alarmingly scant in the area of my butt but like I said, I know how to handle my body better now than I did in the early years when this problem was first festering below the surface. “Blessed but Cursed”…ya know?
I don’t think I ever wished I would have died rather than become paralyzed. Part of that may be due to the manner in which I was allowed to process, and come to terms with my injury on more of my own terms; rather than having it thrust upon me all at once. Since my injury was ischemic and was the result of having an aortic clamp on for what turned out to be long enough to cause my injuries, I was never in the position of being told “you are paralyzed and most likely will never walk again”. Since they didn’t know, I was never told. I had to wait and see just like they did.
Since I could feel everything, and since I wasn’t being told anything definite, I thought every morning-for the first year or so-was going to be the morning I “shook it off” and starting walking again. Obviously, that day never came. But over that year, or year and a half, I was allowed to gain some perspective on what had happened to me and to come to terms with it. I feel like I had a more smooth transition into life in a wheelchair than someone who has the misfortune of having black turn to white in the snap of a finger.
So, no, I never wanted to die. Not really. I mean, in our darkest hours I think we can think about some truly awful and horrific things; maybe even think about doing these things. But I don’t believe that means there is anything wrong with us; it just means we have a large capacity to feel. For better or worse. My paralysis is something I will struggle with immensely for the rest of my life. And part of me wouldn’t have it any other way.
My parents do have a heated pool, and I use it about once a week (weather permitting, but in SoCal it often is). Because I have very little muscle, I float really well and really do enjoy that feeling of weightlessness. Additionally, it’s hard to describe, since I don’t have sensation throughout my body, but I just get a sense of “space” in my body when I’m in the water. I spend most of my day sitting in a chair, so lying on top of the water, floating freely and supported from below is a different mental, if not physical, sensation.
Ooh - how does ticket-purchasing work, when you need special seating? I mean, when I want tickets to something, I go online to Ticketmaster, select the best available seats, pony up the insane ripoff fees, and I’ve got my seats. Obviously in your situation you need something on an aisle, at the very least, and presumably where they can remove the regular seat, or they would have to place you in a designated area up front, or whatever. As far as I know, there’s not a way to specify that kind of thing on Ticketmaster.
Someone else asked “do people like to go with you” because of easier parking / seating… a mobility-impaired friend and I took our kids to a theme park a year or so back, and yeah - the close-in parking was kinda nice (but I did recognize that my benefit was her necessity). And of course the downside for me, the AB companion, since of course I stuck with her, so moving around the park was much less easy.
Would you ever consider showing up at a Dopefest?
First, as I’ve said, I’m not terribly political. I haven’t decided what I believe on a host of hot-button issues and so I avoid piping up in any kind of political thread here at the Dope as a result. I am willing to be educated, but I’m careful not to speak before I know what I’m talking about…generally.
Now that I’ve covered my @ss, I’ll say this: It seems pretty clear to me that marriage is a civil right, and so I can’t see any legitimate way someone could deny that to same-sex couples, based on the law.
However, I do know a few conservative Christians (NOT the Fred Phelps kind) who believe that voting for gay marriage would violate their consciences, since they believe only God can define marriage, and that He has spoken on the issue. Of course, to them, the Bible trumps US law. These are good people, and I can respect their opinion, because I believe it comes from a place of love (in their minds).
Of course, the good news is that we don’t need their votes to make same-sex marriage legal everywhere. It will happen, and soon. So the US upholds its duty to provide equal rights, and my Christian friends don’t commit what they believe is a sin against God. It’s a win-win.
Last thing: Can we please not turn this thread into a debate on this issue? if you think I’m way off, I’ll happily read what you have to say in a PM. Or you can Pit me.
Ouch :(. (of course, on the other hand, if someone ever calls you an ass, you can say “nope, and I’ve got doctors who’ll testify that there’s no ass here!” ;)).
If this is ever an issue again, could they use tissue expanders, and/or some kind of muscle-flap transplant? I’m thinking something like taking your quadriceps or something, to build up the tush area.
True story: My boyfriend had bought us tickets to that concert as a post-graduation celebration. But then he broke up with me right before we graduated! Wah Wah! :smack:
I have no idea if he ended up going, but I like to think he didn’t.
Did you? Was it awesome? Lame? I heard mixed reviews about that tour overall.
First off, I sincerely apologize for the book hecack. Me & my biiiiiiiiiig mouth, which , sadly, I’mma open again.
I’ve noticed there are terms used in the thread which might be considered by some to be un-PC, handicapped crippled, gimpy, etc Do you resent use of such terms by AB people “ie: you can’t say that… those are our words?” Or can the whole political correctness thing kiss your tushie? 
Are there terminologies you do find offensive, what words do you prefer to use
?
I hope you don’t take offence to this question.
I actually went to both of the LA stops they made during that tour, about a year apart (I am a huge Sting fan and love The Police). The first time around was at Dodger Stadium, and it was, indeed, awesome (although I missed the opening act, which was Sting’s son’s band, who, I was told, were terrible). The Foo Fighters were on for about an hour before the Police, and they were amazing, as well.
The second time around, at the Hollywood Bowl, Elvis Costello opened for them. Costello doesn’t really do anything for me, but The Police were great again, and as you probably know from attending other Hollywood Bowl events, it was a big 'ol party. Great time!
Sucks that you didn’t get to go! Your boyfriend did try to get in, but I turned him away at the gate. I told him to go home and think about what he had done.
