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Thread: Inevitable

  1. #1

    Inevitable

    This past summer was the third since my injury! And despite my high injury and my proclaimed by a few select members on here "bad attitude" I got up to quite a bit considering my dependence, financials, inability to find help etc. Mostly to do with the fact I decided to pursue my friends where as the previous years, I didn't want to burden them or limit them with my presence you know the whole accessibility limits, battery life, leg bag, AD, potential accidents A staggeringly longer list than I care to make. Thusmost rarely or didn't at all try to get a hold of me. But now because of a falling out I have moved to the city, I give my mother quite a bit of money to help me and she is still able to work on line. I do this because I do not dilute myself that I am independent by obliterating a large sum of money on a accessible home, and having caregivers coming twice a day, not my idea nor definition of independence. And you know what I like being able to sleep in or stay up late every now and then. Something that can't be done when I utilize caregiving organizations same time every morning and every night that's when I get up that's when I go to bed, I'll pass on that "independence". But by moving to the city no longer in my hometown where a lot of my family lives, but let's be honest during the winter my friends are all gone and I didn't really see my cousins all too much, when there's even a few inches of snow I can't even get outside back home. But I digress, I haven't been up to a lot since. Mostly just managing my seemingly inevitable side affects. And becoming a more frequent poster sorry lol. When it was still relatively warm out I decided I'd be a big boy take the train all by myself get the taxi drivers to handle my bags, go visit a friend who was having a party. You know regrettably expected him to handle me at night! See iam opening myself up to this in my eyes disgraceful way of life. It's not the "big stuff" anyways I showered and did my treatment (had it done ) so basically it's a easy night carry me in bed,Strip me down attach the night bag. Well in the middle of the party having a good time I ended up shitting myself, I just got quiet and figured I'd sit in it until I catch my train The next day, come home with a nice present for my mom or nurse ( they help sometimes not with that stuff tho). At bedtime my friend ended up getting it out of me what had happened, and my best friend since grade two Wrapped up my clothes and cleaned the shitfrom under me. Luckily he and I were both very intoxicated, but I don't think I'll ever forgive myself for that one . Ah whatever right I broke my neck so it's perfectly acceptable ...

    Anyways other then going to see the new James Bond movie, physio haven't really done anything since. BUT I was in the hospital for 10 days with a serious kidney infection keeping my fever over 40, i've also had many times in the ER at least six in the last two months because of dysreflexia and blocked catheter. Plus I had a bedsore to boot, and my spasms have become relentless, Bad enough for me to up my baclofen. I have always had full body spasms, and bad nerve pain but I did everything I could to tough it out and stay off as much drugs as possible. Since They exasperate The associated decay after paralysis and are not ideal when trying to actually fight the disability. Now I got a supra pubic catheter Because I had so many infections that I had become resistant to most antibiotics, I was sick of people touching me down there, and I can't do that myself and having somebody do them every four hours destroys a Day that has enough limitations that can't be avoided. But something is obviously wrong! I had the kidney infection my urologist was away, when it kept clogging she was away again, so I tried another urologist one that had to remove stones for me awhile back. He ended up rushing me in last week Because I had to go back to the ER and my kidneys are taking a beating at the old age of 23! So he sucked everything out of my bladder put in a 24fr from a 14. So much blood! I ve recovered since that it was relatively minor although A.D. make any surgery potentially life-threatening if you insist on being killed if a stroke does occur. But guess what, it's flowing but I'm still getting AD randomly while I sit in my chair, sometimes really bad. An hour ago it was so bad I had to check down there, and for whatever reason I was pissing through my penis . When you have as high pressure in your bladder as me that's bad and my right flank area is killing me. This has been happening the last couple days, it starts with a chill, small chill. I think "oh no not again", then the chills get worse slowly leading to head pain and heart pounding which all combined and get worse, then my entire body spasms shakes and seizes together which can remain for hours or the rest of the day all from just pissing, don't ask me why that causes such Dysreflexia. bp does too but that's not random and I'm prepared for it, and it's usually not as painful And severe.

    Now I am the last gimp to just expect society to accommodate me because I broke my neck! I don't expect parking spots to be close and empty, I don't expect ramps to be dumped everywhere, I sure as hell don't expect taxpayers to pay for me to be taken care of because of my shortcomings with paralysis. But one thing that does bother me It's hospitals that don't have lifts available on all units, or fully understand what AD is.because honestly going to the ER just because you are having bad ADis pointless, you might as well just try and figure it out yourself. This really bothers me, because I asked to be left alone in that swamp after my accident, I then asked to refuse care of a few occasions to save myself from a life of dependence but those choices were made for me, . So if the medical community is only offering the option to live like this, and be taken care of well then if things are getting worse be prepared to deal with it Fuck, put me under, kill me, just don't look at me all miserable and surprised because I can't get myself in bed, fuck.

    OK OK, I can't really avoid these things, for whatever reason they won't stop. I have good quality medical supplies though duette catheters arent available in Canada, and sometimes my leg bags holds urine in the tube even though there is room in the bag. Maybe one of you guys know the BEST Leg bag?? And my kidney pain is giving me a lot of anxiety cause if they go that be my least preferred way to go, at least one of them. But this Saturday for the first time in two months I'm supposed to go to the Christmas party hang out with people my own age, drink alcohol you know try to have a little bit Of fun, but I can't shake the fact that I might piss myself i'm not taking my mother or caregiver, they'll be lots of girls there . So fuck!!

    So frustrating because I've been so sick, and continue to get sick and I understand that a lot of this is inevitable with paralysis The whole dysreflexia, osteoporosis in my bones, infections etc. But I eat raw garlic everyday, I only drink water and fresh chai tea, and every day I drink a raw pure organic vegetable smoothie a massive one 3 times a day, trust me when I say few people could do this, and I know a lot of health nuts , I don't drink pop, I don't eat candies I rarely eat out, I eat organic chicken and get my fish, i get all of my vitamins and minerals etc you can see it in my hair nails and skin and teeth and yes I don't catch a cold or the flu even when people I live with do. But I'm still in agony, I'm still technically unhealthy very unhealthy in fact. It's mind numbing. All I can think of is the argument I got in on apparalyzed with a T12bodybuilder how he tried to tell me that spinal cord injury doesn't mean we are not less healthy to our able-bodied counterpart which is garbage.even though he openly admitted osteoporosis infections all that fun stuff is to be expected lmao. Right now there's some guy that lives off Chito's and Pepsi's playing World of Warcraft 24/7 that won't get a kidney stone, UTI let alone osteoporosis till he's elderly if at all... Scree that Guy!
    Last edited by JamesMcM; 12-10-2015 at 12:51 AM.

  2. #2
    Senior Member pfcs49's Avatar
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    That was a long read! Thanks for sharing.
    I hear you, and want to acknowledge your courage and determination.
    I'm one of those lucky T12 jerks, but would never argue that I'm healthy.
    This sucks, but the alternative isn't acceptable to me.
    Enjoy your party and let us know how it went.

  3. #3
    Oh on my more painful nights. Pissing blood this time I have to take to here to focus on something other than s this time I have to take to here to focus on something other than cable TV pain and spasms, and boredom. This is when I can be notorious for long reads!. T12 jerk why would you say that? Haha I don't even know you but I'm sure happy for you that you are a T12, Hope your incomplete too. not sure where you see courage my friend, there's none of it is to my eyes I'm just doing what I can while iam here and trying to get by, depending more and more on others because I want to do more , that's not courageous. Regards to determination I certainly hope you mean my regards to actually "fight" against the disability? Fighting the disability is not accepting it and rolling with it trying to do things, that would be the opposite of fighting literally but a common misconception among us . I mean actually confronting it, trying to destroy it rid myself of it. The alternative to that is not acceptable to me.

    But I got in my chair maybe an hour ago and I'm already going dysreflexic. For whatever reason I don't seem to piss myself when laying down, maybe the catheter is just too big for my bladder when sitting up I don't know, but it could very well be a sign that I am not going out.
    Last edited by JamesMcM; 12-10-2015 at 05:34 PM.

  4. #4
    Quote Originally Posted by JamesMcM View Post
    Pissing blood this time I have to take to here to focus on something other than s this time I have to take to here to focus on something other than cable TV pain and spasms, and boredom. --- But I got in my chair maybe an hour ago and I'm already going dysreflexic. For whatever reason I don't seem to piss myself when laying down, maybe the catheter is just too big for my bladder when sitting up I don't know, but it could very well be a sign that I am not going out.
    Hi James,

    I had a SP for 23 years, it too was a 24fr. My experience with it (whatever that's worth) is what is causing you to pee is bladder spasms that you're not feeling. I know in my case my bladder was pretty sensitive as well and bladder spasms (not body spasms, which you can see and feel) would occur randomly and I'd pee too. What helped me reduce the spasms was to inflate the balloon with just 4-5cc instead of the full 10cc, it never pulled out with less in it and the smaller balloon had less surface area to contact my bladder wall and irritate it. You might try experimenting with the amount. Remove a small amount, 1-2cc at first to see if it helps. Also, I'd double up on ditopan though I think you mentioned you get dry mouth pretty easy. I'd get bleeding and clots too, polyps as well. In most cases it was caused by a small hair, or small foreign object, that was on the surface of the balloon which would rub on the bladder wall and irritate/aggravate it. I'd very carefully inspect the balloon when the tube was changed to see if anything was on it, almost always there was. The ostomy was a hair magnet no matter how shaved or clean I tried to keep it. You know how irritating it is to get a small hair or foreign object in your eye, it can't feel any better in your bladder. Also, because of my bladder's sensitivity to the SP I eventually had to have it changed every week, as opposed to once a month.

    Hope you get it sorted out soon,
    TW


  5. #5
    This massive thing is 20ccs I don't exactly know how I get someone to take that much out, mom's not exactly qualified and I'm not physically capable

  6. #6
    Senior Member pfcs49's Avatar
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    My suprapubic/24fr takes 10cc. I've not heard of a catheter that inflates to any more than 10cc and I've seen several conversations about reducing that in cases like yours.
    IMO 20 cc is guaranteed to cause a problem.

    EDIT: to take out a specific amount, you need to have an appropriate syringe-identical to the one you filled it with or one with somewhat less capacity. CCs are marked on the cylinder.
    I change my catheter monthly; the kit includes a pre-filled 10cc syringe. I save the (now empty) syringe to deflate the next catheter when I remove it.
    There is nothing tricky about it; the blunt end of the syringe fits into the socket on the catheter (kind of like the drain tube fits into the tapered catheter exit) and automatically opens the drain-valve while they are mated, and allows it to re-seat when it is removed. As soon as they are mated you will probably see pressure from the balloon pushing the syringe out as fluid moves into it. Stop it at the amount you want to remove and then twist the union between the syringe and catheter port apart. Simple! All you need is the syringe. (perhaps you should pull everything out and then inject 10cc? Be careful to not let the catheter fall out if you empty the tip; if you venture there, make a mark with a felt pen that makes it clear where the catheter exits your belly and have someone hold it in position while the balloon's deflated. After there's 4-5cc in, you can push the catheter in a little, then pull it out gently to confirm the balloon is inside the bladder and being restrained by the bladder wall.
    Last edited by pfcs49; 12-10-2015 at 11:09 PM.

  7. #7
    Yeah I know it's not exactly rocket science, I just lack the arm hand wrist and forearm function, and have incrediblely power full body ( hands, arms, legs, stomach) spasms especially when stuff like this is done. My mom doesn't exactly trust herself with this. For whatever reason she won't do it. I can't stop going dysreflexic, this is a fucking joke going to have to go to the ER with invisible symptoms, that are apparently very serious. As I get carried with my mini crane into a hospital bed I ask myself as they strip me of my clothes,what courageous heroic feat shall i do next!


    I almost certainly remember my urologist after the surgery telling us that he put 20 mL in the balloon, which seems stupid to do in a neurogenic shrunken bladder.

  8. #8
    Tumbleweed, Pfc i'd like to say thank youfor your advice, I convinced my reluctant mother to take 5 mL out of the bloon thus avoiding er. I walked her through the simple process using your steps Given. Now for reasons unknown the AD has not completely stopped but I can easily say 50% reduction, and the very intense AD is less. Thank you gentlemen one less thing on the shit pile right

  9. #9
    You're welcome James, glad you got some relief and kudos to your mom for overcoming her reluctance.

    One other thought that you might want to consider in the future (if you haven't already) if you continue to have issues with it and that is to try different materials of catheter. With my sensitive bladder the material made a big difference. I can't remember the specifics of some of the early ones I used, other than the color, but the blue ones worked well for a few years, then I had to switch to green before ending up with the last type which were silicone coated and a light brown. I do remember trying a white one once and by the reaction you'd have thought it was made of barb wire. Bled like a stuck pig, BAD AD, clots, etc, removed it and the problems went away, right away. While the kind of material that worked for me is irrelevant to what may or may not work for you, the point is it is something you may want to consider if you continue to have problems.

    TW


  10. #10
    Senior Member pfcs49's Avatar
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    if there really was 20cc put in, you might revisit this because IMO 15cc would be still overfilled and not good.
    If you have a big enough syringe (15 or 20cc?) see how much is actually still in, then refill 10cc.

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