Ask the Girl in the Wheelchair

In My Humble Opinion
401

I can’t imagine I would regain use of my body. I’m no zombie-ologist, but I didn’t think they could regenerate limbs, so I find it hard to imagine my spinal cord spontaneously reconnecting.

As for whether or not I would be kept alive, I certainly hope my caregivers would put me down. For one, that’s so gross to think about. For two, where are they getting these brains they’re feeding me??

Ahahahahahaha! Okay, so I’m actually thinking about this. Hm…I’m gonna go with “no.” I already have plenty of memories of being able-bodied; I don’t think I’d like to taint those pleasant thoughts with ones of being an AB unquenchable brain-eating monster as well. Plus, I don’t know how I’d live with the guilt if I ate somebody I loved, with a crystal clear memory of it once I was un-zombie-fied. Also, the first thing I’d do if I ever became able-bodied again would be to take the first hot guy I saw to bed, and I don’t imagine that being on a zombie me’s wish list, so what’s the use?

I have to say, this thread has taken an entirely unexpected, though not unpleasant, turn. :wink:

p.s. In order to dictate this post, I’ve had to teach my voice software the words “zombie-ologist,” “brain-eating,” and “un-zombie-fied,” which added them to my personal vocabulary dictionary. So I hope I get to use them again at some point.

402

umkay-Did your injury ruin your body’s internal thermostat? If so, is your warbrobe more “summery” than normal?

403

Do you like coffee?

404

I’ve flown plenty since I landed in the chair almost 13 years ago. It’s never fun to fly, but it would be less fun to drive to most of the places I’ve visited (Florida), or flat out impossible (Hawaii and Europe). I avoid it whenever I can, but it’s usually the most practical way to get to vacation spots, so I suck it up. My parents graciously pay for first class to make it a little easier on me (I’m aware this makes me very lucky). And the vacation almost always makes up for the trauma of getting there and back. :wink:

I can do long flights; I have flown to Europe from California, which is, what? 10 hours non-stop? But it’s really hard. For one, anytime the flight is 6 hours or longer, I have to be catheterized mid-flight. This has to happen in my seat, since a helper and me in the aisle chair can’t both fit in the lav. I’m cathed through a stoma in my lower abdomen, so it’s not like my carer has to take off my pants or anything, and she tries to be discrete, but it’s still really awkward for people to see (oh, and you better believe they will try to get a look).

I also have to be as careful on planes with my pressure relief as I am when I’m on the ground. That means that every 30 minutes, I have to get off my buns for at least a minute, and be repositioned in my seat thereafter. So a helper has to undo my seatbelt and the chest strap we bring to hold me upright in the seat, straddle me, grab me under the armpits, and lift. I just hang there for a minute, which is apparently super interesting to my fellow travelers (I know I’d be interested if it weren’t me). Then, back down and re-secured. On a ten-hour flight, even if it’s an overnighter, this needs to happen 20 times.

Add to this all the normal activities of my peculiar daily life, like being fed by someone and using a mouthstick to read a book or magazine on my Kindle, and I’m quite the in-flight entertainment! :rolleyes: I hate flying but–needless to say–the shorter the flight the better.

That is just the best compliment you could give me. :smiley:

405

Yup, my internal thermostat is pretty much f*cked. But that doesn’t mean my clothes are summery. If anything, it goes the opposite direction more often. Basically, I’m at the mercy of the elements. If it’s a hot day, I can overheat super fast. I’ve already mentioned, but I can’t sweat below the neck, so my body doesn’t cool itself down very efficiently. And on cold days, I freeze fast since I can’t shiver to warm myself up. On top of all of it, I can’t feel my body, so I don’t necessarily know that I’m too hot or too cold until it’s a problem. A lot of time and energy goes into keeping me the right temp.

406

Nope. I try to stay away from caffeine in general, being that it’s a diuretic.

407

What did you think of Hawaii and what all did you do/what islands did you visit?

408

I suppose like most of us you have been in a fight with a loved one and wanted to storm out of or possably into a room. Is your chair fast enough to produce a desirable dramatic moment?

I imagine that you have developed some nice forms of body language or a particularly well honed set of facial expressions. Do you occasionally punctuate your speech with chair movement? You seem much to full of life and wit to not have found ways around this specific physical limitation.

409

I’m curious about physical symptoms of emotions. For example, do you still get breathless if you see a dishy fella?

Also, as I’m sitting somewhat stressed about various things, I can feel an icky feeling in my stomach and tension in my shoulders. So I was basically wondering if you can’t physically feel tense, does that affect how you feel that emotion mentally? I’m not sure if I’m expressing it well. I’m not really suggesting you feel emotions less intensely, but I think in my body there can be some sort of feedback loop between my body tensing up, which makes the brain feel more tension, which tenses my body up more etc. For example, when I try to calm myself I often feel I’m “fighting” my body’s out of control fight-or-flight instincts. So I was wondering if not having to deal with at least some of these reactions (you did mention neck tension earlier on in the thread) has made you any calmer or whether this is a completely off the wall notion of mine.

410

Have you ever had any accidents? Like falls? I think most people take for granted that if we start to lose our balance, we reflexively try to stop ourselves from falling. But if I can’t move, I can’t do that, which, to me, sounds kind of scary.

Or what about other kind of injuries, like having something too hot/cold come in contact with the part of your body you can’t feel?

You said you have sensation starting around at your neck- whats that like, is it like going from instant ‘nope, dont feel that’ to ‘feel that 100%’ or more gradual? Whenever I get anesthetic, I kind of wonder if borderline areas on people with damaged nerves/spines get that ‘fuzzy’ sensation of vaguely being able to feel stuff.

411

How do your catheterization and pressure relief regimes affect your sleep?

412

I want to thank you, first, for this thread. It’s been incredibly educational, amazingly inspirational, and secondly, it might just save my Dad’s life.

Seven months and 1 day ago, my Dad fell out of his truck and suffered a C4-C5 injury.

He was in ICU for . . . Geez. . I’m not even sure anymore. . . 12 or 14 days, maybe longer-not as long as you were, but long enough. At first he was intubated, then not, then intubated, then not, then intubated again- eventually he was trached, and now he’s finally breathing. He’s had pneumonia twice. So back to ICU twice. Later, he had shingles, but that was just for fun.

The biggest problem, so it seemed, turned out to be that his spine was bruised, not severed. And like any bruise, it got bigger before it got smaller. So, the Doc’s didn’t operate for days, because the worry was that if they fixed the vertebrate it would allow his spine to swell. And the swelling of his spine might just swell enough shut down his lungs.

So. . . He was completely immobilized for a couple weeks and ended up with a pressure sore on his tail bone we’ve been fighting ever since.

Because of the pneumonia, he was originally sent to an Acute Care facility (LTAC). That place was wonderful. He got speech therapy, needed because of both his original injury and because of the multiple intubations. Speech therapy double’s as swallow therapy, I’m told, and vice versa, so there was some hope he could eat again.

He got physical therapy- pretty aggressive, too. At one point he was lifting one pound weights. No dexterity, but certainly movement and strength.

And, he had a bed like you have! Bad ass bed! No constant turning!

But then. . . He stabilized. Good news, you’d think. But no. Once he stabilized he wasn’t officially sick enough to stay in the LTAC, so he got shipped to a nursing home. (I don’t have the time, the skill, or the money to take him home with me. I’d make the time, and learn the skills, but I still wouldn’t have the money).

Since he’s been there he’s had no speech/swallow therapy. Hasn’treally eaten since late October. I brought him ice cream once, but the Docs put the kibosh on that. He had no PT for the first month, and now has contractures in both knees and his only “working” elbow. And I bitch and moan. . . And bitch and moan . . And get put off. . .the excuse is always the pressure sore.

I suppose he’s safe there, but he doesn’t get the care or therapy he really needs. He doesn’t have the cool bed. I offered to buy the bed (my brother and I would finance it), but the place won’t allow it due to warranty/maintenance issues.

When I say you might save his life, it’s because I wasn’t aware pneumonia kills most quads. The LTAC was constantly giving him RT. Percussion and help coughing- forced coughing. I’ve never seen this nursing home do that. I’ve been, we’ve all been, more worried about the pressure sore.

So, I have a meeting with the powers that be in the morning, and I certainly plan to bring respiratory care up.

It’s a sad place, where he is. I’m there twice a day to visit my Pops, butI rarely see families visiting the other residents. You’re truly blessed, as you know, to have your family.

Thanks again for this thread. I might read some of of to Pops one day. He’s 71 years old, so I’ll leave out the same parts I’d leave out if I was reading to my 11 year old nephew :slight_smile:

If you ever find yourself in southern NM, look me up. I’d love for a young, pretty girl to tell my Popsicle that all is not lost.

Lastly, I have no advice re: Zombies. Personally, I plan to submit, but I imagine that’s not for everyone.

413

Wow! Wrote that giant post and forgot the question? Have you had to deal with pressure sores? I know you work hard to avoid them, but have you had one? Or more? And if so, how much did it slow you down?

414

I don’t really want to butt in on umkay’s thread, but I know it takes her longer than me to type a post, and your post about your father has really alarmed me.

Is there any way to get your father out of that nursing home? Because they aren’t doing him any good.

Re: pressure sores. My spouse has had them (despite having mobility - he has reduced sensation so he can get him simply because he doesn’t feel the pain of not moving for long periods) and I’ve twice taken care of bedridden, nearly immobile dying relatives. The key thing is that people have to shift position. That’s the way you prevent them, and even more so it’s necessary for healing.

Treatment, aside from keeping ALL pressure off that area, means multiple cleanings/rebandagings throughout the day, along with the applications of any required medicines to fight/prevent infections. In extreme cases debridement of dead tissue and skin grafts are required. In all cases they take a long time to heal. The treatment must be kept up for weeks, even months.

In a prior post umkay mentioned how frequently someone used to have to turn her throughout the night. She needs someone to shift her position in an airplane seat every 30 minutes. My spouse at one point resorted to setting a kitchen timer to remind him to stand up every so often. This sort of thing MUST be done. When there is already a pressure sore it is even more important. It’s not just death, pressure sores can lead to amputation, sometimes even extreme amputations as poster Angel1366 can tell you.

I don’t want to alarm you, I really don’t, but if the place is located he is NOT doing respiratory therapy and are NOT turning/shifting him regularly he is going to die because that is NEGLECT of his basic, basic needs as a quadriplegic.

I’m concerned that because he’s 71 they won’t bother with him because he’s old. I’m concerned they just don’t give a fuck about anyone there.

This is what I mean when I say poverty can be fatal to someone disabled.

Please, please, find some alternative for him. Harass the staff at this “nursing home” he’s in. Keep on top of them, let them know you still give a damn and they won’t be allowed to ignore your father to death. The bit about the pressure sore strikes me as bullshit. Warranty/maintenance issues around the special bed strikes me as bullshit and furthermore is STUPID as it would reduce their staff’s workload considerably!

Please understand that I do NOT blame you for this. Why the hell would the average person know the needs of a quadriplegic? What’s important is what you do going forward.

415

Thank you, OP, and thank you, Broomstick. I’m sorry I couldn’t get to this sooner. I’m actually putting off an important work email right now because I want to respond to this as quickly as possible.

Why?

Sami41: your father is having a medical emergency.

Make no mistake: Your father is having a medical emergency. I’m hoping you get this before you meet with the nursing home honchos this morning, because the staff is killing your father. He will die this year if his care doesn’t change significantly. He is not safe there.

I’m not being dramatic. The care you’ve described to me is negligent for a quadriplegic. It’s completely unacceptable. (It needs to be said that, like Broomstick, I don’t blame you at all for this).

Here’s what’s wrong (if I could tremble with rage right now, I would be):

WHAT? He hasn’t EATEN? There’s absolutely no reason that a C4-5 quad who breathes independently and is otherwise of sound mind shouldn’t be eating. A g-tube is not indicated in this situation. I have a higher injury and I eat. Since your dad would likely need to be fed, or at the very least get help putting on palm straps, I’m guessing the staff doesn’t want to go to the trouble. But guess what helps heal pressure sores? PROPER NUTRITION. And, I don’t give a f*ck what the (useless and uninformed) doctors say–get your dad eating again!!

He will continue to lose mobility the longer he goes without PT. The tragedy of this situation is that he’s still newly injured–there’s really no telling how much he could recover, since injuries don’t really stabilize until around 2 years after the accident (sometimes longer). I was vent-dependent for the first 8 months after my injury, but I’ve been breathing independently now for 12 years. But it requires work and dedicated professional help to get that stuff back. Does he have insurance? I’m f*cking useless with how to deal with insurance/Medicaid to get him PT, unfortunately, since my privileged @ss never wanted for anything, before or after my injury. :frowning:

This couldn’t be further from the truth.

This is some bullsh*t. So they WANT to come into his room every 2 hours at night to turn him?? Because that’s what quadriplegics need in order to avoid pressure sores. Of course, I’m guessing they don’t do that now, so the bed seems like a hassle to them.

They’re not COUGHING him?? I’m shocked. Yes, pneumonia is the number one killer of quadriplegics. Coughing us is not hard, but it’s a learned skill. SOMEBODY needs to cough him at least once a day in the morning. (And the second most common killer of quads? Pressure sore complications. Your pops is in some serious danger here, friend. :frowning: )

Again, none of this is your fault. You couldn’t have known. But you need to become informed if you’re going to get your dad through this year. Please, please, please go to www.apparelyzed.com, sign up, and start asking questions in the forums there. The folks on there (all dealing with some kind of SCI) are super helpful and likely waaaaay more knowledgeable than I am on the medical/insurance/financial side, which will likely be at least half your battle.

Keep in touch. Let us know how this goes. I’m so so so sorry, for both you and your pops. :frowning:

416

What I find captivating about this thread, umkay, is your voice. You have a very insightful and engaging way of relating information, and you don’t shy away from topics. You’re not a one-trick pony, either, as many posters are. (And I include myself in this criticism, since I tend to focus on the legal aspects of almost any discussion, especially now that Buffy and Angel are out of the CS consciousness).

I hate to beat on the word insight, but I’ll use it again, because it’s a rare quality. What makes you fascinating to read is how you think about, and, through, things. I am absolutely a fan.

417

umkay:

Who was the last person you pissed off?
What did you piss them off about?

Do you take any prescription or non-prescription drugs that are intended to affect your moods?

418

Umkay

What is the air speed velocity of an unladen swallow

419

Not enough details for her to answer.

African or European?

Oh - and I think it’s quite possible that** Umkay** and Broomstick may have saved Sami41’s father’s life today.

420

Another question that I don’t think has been answered (as such) upthread:

At what point did you go from the normal horror / grieving / terror of realizing your new reality, to the “fuck that shit, I’m not letting it keep ME down” attitude that I definitely get from everything you say? Were there some specific events / people involved that helped get to that point?

I’m a big fan of the “FTS, INLIKMD” attitude in general (it’s gotten our autistic son to the point of being within 2 weeks of graduating from high school).