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Thread: 20+ Years Post

  1. #21
    Senior Member Zeus's Avatar
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    Lynnifer,

    I'm in a similar position to yourself. I had a SCI when I was 7, and I'm 30 now. I'm a C5/C6 complete quad. This thread seems to have evolved into two streams: what long-term complications have you had; and what have you had to let go of over time. This is an interesting topic! My apologies for coming late to the party.

    Firstly, at 18 (11 years post) I had a spinal fusion. It was expected - I was told at 7 that scoliosis is inevitable for pre-adolescent quads. I was banned from pushing my manual chair, and had to get an electric. Best damn thing I ever did! I am more independent than ever, and a quad pushing a manual chair does less exercise than you'd think (I get my exercise from weights these days). Saturday was a beautiful spring day in Sydney. I grabbed my iPod, hit the local bike tracks, and went on a 20 km stroll in the breeze.

    Secondly, since my SCI I had used a condom catheter and relied on 'tapping and expressing' to void my bladder. At 28 (21 years post) I started getting re-current UTIs - I used to average only one every 3 or 4 years. After a year on and off antibiotics, which played HAVOC with my bowels, I discovered my bladder had stretched to the point where it holds over a litre and cannot void completely. The large residuals were causing the UTIs. I ended up getting a suprapubic indwelling catheter. Again, best damn thing I ever did! I only change the catheter every 5 weeks, I change my sterile leg-bag every 5-7 days, and no more condom catheter coming off every second week!!! It's been over a year since the SP surgery, and I haven't spilt a drop of urine since.

    Thirdly, I felt very fatigued during my 20s - I would dose off all the time - and by my late-20s I assumed ageing with a SCI will be unbearable. I discovered I had sleep apnea, which is not uncommon for quads. It added to a spiral of weight gain, topping out at a whopping 118 kgs (260 lbs). I've now been on CPAP for over a year, and I'm a changed man. I feel better than I did at 18, and I've lost 28 kgs (62 lbs). CPAP has made me excited about my 30s again.

    Fourthly, after 23 years of enemas and digi stims, I have some awesome haemorrhoids. I get AD during my enemas (mainly sweating after I've been on the commode for more than 30 minutes) and quite regular bleeding. The bleeding stops fairly quickly, but it's still disconcerting. I'm in the queue to have them surgically removed - hopefully in the next month or so.

    Fifthly (and finally!), I taught myself when I was 7 how to write without a splint. It involved sliding a pen in between my thumb, index finger and middle finger. I would then pin the interlaced pen against the side of my chin for support, lean down to reach my notebook, and write away. I could write at around 80% normal speed, which served me well during high school. Unfortunately this probably aided my scoliosis (with me hunched over all day) and almost certainly was the cause of my short-sightedness, since my eyes were far too close to the page while writing. Thanks to computers, I rarely write like that. Next Wednesday I'm getting Lasik, which I'm really looking forward too.

    That's the five major health issues I've had thanks to 23+ years of SCI. If you'd asked me a year ago about life as a long-term quad, I would have been very pessimistic about old-age and SCI - and by old-age, I was terrified of my 40s given how I was feeling. The amazing thing is, in 12-18 months my whole outlook has changed. All I can say is that you never know what the future holds. It is possible to solve some of the problems long-term SCI throws at us.

    Now to what I've let go over time. There's probably been three things (I'll try and keep it short - if you're still with me, thanks!). Firstly, I've given up on some of my career ambitions, and I think that's been great for me. I worked at a corporate law firm for four years, and it was difficult for the AB junior lawyers, let alone for a C5/C6 quad. I've given myself a year to explore my options, and next year I hope to start a Ph.D in law which I expect to be less work and much more rewarding than corporate law ever was.

    Secondly, I've started to cut myself some slack. I used to think, regardless of the situation, I should act like I would have without a SCI. For example, if I've had a long day and I'm at a restaurant for dinner, and the waiter's being a pain, I might keep my mouth shut and take it (non-SCI, I would make the waiter rue the day they met me). Afterwards, I would beat myself up for not being more assertive, but I've stopped doing that in recent years. Sure, there are times we need to be assertive, especially given our SCIs, but if I decide not to sweat the small stuff, I'll no longer beat myself up over it. I've also gotten myself into some moral dilemmas, which I probably wouldn't of if I didn't have a SCI, and I don't regret those either. Unfortunately for you guys, I'm not sharing those stories just yet...

    Finally, I think at 30 I'm learning to love myself a little more. Like many quads who are looking for Mrs. or Mr. Right, I'm sure most (if not all) quads at some point have asked themselves who would want to put up with their SCI crap willingly. But you know what, if you've survived an SCI for over 20 years, you're probably a pretty amazing person. Frankly, I'm quite a catch, if I do say so myself.

    Thanks for indulging me!

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  2. #22

    What is CPAP?

    What is CPAP? I need to lose weight desperately thanx to antidepressants which I NO LONGER take! Thanx!

  3. #23
    Great post cspanos, especially regarding the crede method. I try to explain to health care folks what that is and they look at me like I'm crazy. I suppose its a bygone method taught to us folks injured during the 70's but it's kept me catheter-free so I won't be letting it go anytime soon.

    I taught myself to write too but using both hands, it's not as awkward as it sounds. Since this was before the ADA and note takers, mainstreamed disabled kids were expected to keep up. I write faster than most AB's and never requested extra time to complete tests.

    And, like you, I've been in a power chair since around age 11. That was the best thing to ever happen to me, gave me soo much independence.

    This also reminds me to do some follow-up re my sleep study. I never returned for the 2nd test because they wanted to test my blood oxygen levels which meant a needle in the artery...it hurt too much in my arm and the ad would get too bad to do it in the groin but I really need to conquer this fatigue thing.

  4. #24
    Senior Member Zeus's Avatar
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    Quote Originally Posted by SilverSpring
    What is CPAP? I need to lose weight desperately thanx to antidepressants which I NO LONGER take! Thanx!
    CPAP stands for Continuos Positive Airway Pressure. A CPAP machine helps with sleep apnea - it is not for weight loss. Do you feel sleepy during the day? I was constantly fatigued during the day, which slows your metabolism and makes you crave food.

    CPAP treated my sleep apnea, which allowed me to focus on my weight. I lost my weight the old fashioned way - diet and exercise.

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  5. #25
    Senior Member Zeus's Avatar
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    Quote Originally Posted by seneca
    Great post cspanos, especially regarding the crede method. I try to explain to health care folks what that is and they look at me like I'm crazy. I suppose its a bygone method taught to us folks injured during the 70's but it's kept me catheter-free so I won't be letting it go anytime soon.
    Thanks for the compliment. I take it that the crede method is what I call 'tapping and expressing'. It is a cool method for those of us with reflex bladders, but it does have serious problems - which is why nobody teaches it anymore.

    Keep an eye on the health of your kidneys! Also, if you notice an increase in your incidence of UTIs check your bladder's capacity. Over 22 years my bladder got to be three times the size of an adult male's normal bladder - I could hold well over one litre (34 oz.)! This meant even when I voided I had large residuals. I was on antibiotics for a year before I sorted it out - the antibiotics played havoc with my bowels.

    I also find the SP catheter to be life changing. No condom catheter coming off every second week. No intermittent catheters. I haven't spilt a drop of urine in a year.

    Quote Originally Posted by seneca
    This also reminds me to do some follow-up re my sleep study. I never returned for the 2nd test because they wanted to test my blood oxygen levels which meant a needle in the artery...it hurt too much in my arm and the ad would get too bad to do it in the groin but I really need to conquer this fatigue thing.
    Try not avoiding your follow-up sleep study. Once on CPAP, I'm sure you'll regret putting it off. I will ask though, why do they need to stick a needle in you? My blood oxygen levels were monitored throughout the night with a plastic clip over my index finger which shines an infra-red light through your finger. See if they can do this instead.

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  6. #26
    Just checked this thread too. At 17.5 years, I'm not quite in the 20+ club, but still... I'm there. cspanos, enjoyed your post too.

  7. #27
    Senior Member Zeus's Avatar
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    Quote Originally Posted by chick
    Just checked this thread too. At 17.5 years, I'm not quite in the 20+ club, but still... I'm there. cspanos, enjoyed your post too.
    17.5 years... what a lite-weight!

    So when can we expect Chick's life story?
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  8. #28
    Try not avoiding your follow-up sleep study. Once on CPAP, I'm sure you'll regret putting it off. I will ask though, why do they need to stick a needle in you? My blood oxygen levels were monitored throughout the night with a plastic clip over my index finger which shines an infra-red light through your finger. See if they can do this instead.
    I thought that was a pulse monitor. It was during the series of breathing tests that morning. I thought he was going to take blood but I told him to stop because it hurt. That's when he said he needed to get to the artery to measure my blood oxygen levels. I'll contact them again soon.

  9. #29
    Senior Member alan's Avatar
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    I've basically had to give up life. Not because of the quadhood, but because of the damn always intensifying central pain that came along with it. Had to give up a manual chair long ago, and now have trouble driving the power chair because of my back problems.

    It's been a real fun 24.5 years.
    Alan

    Proofread carefully to see if you any words out.

  10. #30
    Senior Member rdf's Avatar
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    The deaths of many loved ones and friends has left me in a remote and philosphical place. If I had my druthers, I'd simply move on to the next adventure.

    Chuck, I hear you friend.
    19.4 yrs

    This is a very enlightening thread, and I hope you all can keep gettin' on alright. I wish everyone over 20 best of luck.
    Please donate a dollar a day at http://justadollarplease.org.
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    Thanks!

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