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Thread: Taiwan

  1. #121
    Senior Member vgrafen's Avatar
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    Hey, mkowalski, you prescient son-of-a-bitch, your OEGs are lookin' good, buddy, won't have to necessarily remove the whole bulb, ya think?

    Damn it, boy, we're on to somethin' here,
    I got a hard-on suddenly...

    vgrafen

  2. #122
    Senior Member vgrafen's Avatar
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    updates

    Jan, I have to weigh in with mkowalski on this one. Be prepared to 'go it alone' on the insurance thing. You may be inviting more trouble than it's worth by bringing them into it. Good luck in Ecuador, though, and come back and post your experiences.
    ~
    Gradually getting better this week, nerve agitation still the essential problem, though my back still gets pretty sore. The docs at UC Davis are wondering if the nerve buzzing I have on my arms might not be related to a cyst in the center of my cord, and have ordered an MRI to check it out. Cheng told me the condition is normal to the procedure, but UC wants to be sure.

    As for phys. therapy, they want to put me in KAFO boots, which I have always heard are a pain in the ass. Anyone with any experience here please detail. The doc is so damn smarmy/smug that anything I suggest, 'Doctor, I'd like to try...' she bats away, 'Yes, well, that's nice but we don't have that here, can I get you some drugs, Viagra?'

    I'm going to put myself through their system, though, still in the pipeline even though they offer nothing of any value other than bone and piss tests, and the occasional prescription. I'm not complaining, I'm not expecting a hell of a lot out of them, I've come to accept the overwhelming belief on the part of the spinal cord medical community, 'it's permament, baby, how 'bout some Viagra?' Pardon the cynicism, but nobody but a few of us actually believe things'll ever change, certainly not the docs at UC. Onward we solo...
    ~
    I'm in the deep part of the procedure now, 2 months since surgery, weeks into the burning sensations and nothing constant motor-wise has come back. UC docs poo-poo the idea that I'm even remotely close to 'incomplete' status, or that phys. therapy will do any good. I'm on my own for sure, but when haven't I been?

    Looks like I'm gonna have problems getting hydro-therapy due to the sore on my heel. I keep ripping it open and going back to square one. Don't really feel like exercising lately, though I've been getting out twice a week and pushing about a mile on pavement. Could be I say ' screw this snail's pace' and go to Brasil in April for cheap, intensive phys. therapy.

    Sorry I'm not answering the hail of emails lately, but I've covered all the questions in earlier postings, or as I said before, I'm not gonna get baited into word-fights. There are a lot of people in our community who refuse to do any research or fact-finding but damn sure want to have somebody else do it, then crunch the info for them, correctly, so they can 'waste no time.'

    I will say this: yeah, I'm HUGE on OEGs, looking damn good and maybe closer than the '3 to 5 year' littany. For everybody 'looking in' on this issue, I'm not a researcher, just a heavy reader and there's a ton lately, here and on Medline. JKelly and Bundy and mkowalski are asking the right questions, and I have little to add. Get informed and do the little stuff that greases the process, letters, emails, calls. If everybody here just made a few attempts to get others informed, man...

    vgrafen

  3. #123

    Insurance

    Thanks for the advice mkowalski and vgrafen, I think I'll take it. My plan was to ask for precertification figuring I've probably got nothing to lose in trying - and they require precertification for any inpatient admission. Dr. Kao said that any gap in your cord greater than two levels is by definition a cyst and could be covered by my insurance company. I think the problem here is that 1) my gap (cyst) would not be considered progressive and 2) this procedure is out of the country - the liability issue like mkowalski mentioned.
    I think I'll just keep my mouth shut and take the tax write-off. I'd hate to lose any other benefits after the surgery is over (meds and follow-up) Thanks, Jan

  4. #124
    Senior Member vgrafen's Avatar
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    my soul doesn't feel good

    Yeah, lately I'm just not doin'. Not looking for encouragement or anything, but my enthusiasm is on the sag and I just feel like getting off the bus and wanderin' off. I know everybody on this forum understands what I mean, and there's damn little anybody can say to bring the spirit back to center. Just thought I'd post this now, and apologies to those emails I'm ignoring.

    The candida has cleared up, heel getting better, basically off the Vicodin and out of the brace. Back's sore but livable. Thumb and arm burning still 'bright,' and the sensation of near-control in the legs comes and goes, maddeningly so.
    I'm excercising much more, pull-ups now, couple times a week I go out to Oroville Dam and do the mile; excercise feels great. Back on the supplement regimen, too.

    Got into the hot tub last night, rain pounding wife and I as we sat and talked and held one another. Moments before, I was black and dour, hadn't touched her in years, it seems, waiting for the monthly cycle, Allen Greenspan and planetary alignment to open the window in her mood which momentarily allows her to say, 'all right, life ain't ALL bad,' before it becomes bad again. We touch, kiss, and my center is restored... somewhat. When she is black, I am Haros, king of Death; when the sun shines from her face, I am INVINCIBLE.

    But, and this I have seen in others on this forum, this sense that, with so much promise on the horizon, stems and OEG's and Neotrophin just inches away, here we remain, indefinitely poised, the brakes on as our Hope grinds away at fever-pitch.

    It's harder on her; I am emersed in my work, my book and foundation, I have my fingers on the edge of research, convinced we're just a hair's breadth away... and yet a mile from the clinic. But for her, the 'wait' maddens her, she looks at me and who I was and hates me for having taken what we once had, wondering when -or if- I shall ever stand alongside her again. And what mere WORDS can I give to ease her, to bring her back to center so I can return to center? Yes, my happiness depends on hers, for if my mate hurts, how can I freely soar?

    No, there should be no waiting, of course, there should only be open acceptance of condition and situation and every moment spent drinking life's cup, but in truth, the zeal cannot ever be maintained, and eventually one falters and the valley is flat again, no change on the horizon, no horizon, for Godsakes, nothing out there but the bleakness, the unchanging sameness of paralysis.

    'Hey, I moved a toe...nah, guess not...'

    I'm a tough son-of-a-bitch, I've been hammered all my life and got back up and into the fight every time, no complaints, no whining. I'm no damn 'gilded winner,' of course, everything taking place smoothly and appropriately, success after success, but I AM a survivor and I will survive this condition. I can take nearly anything, but I so fear the blackness of her blackness from this black condition...

    Yeah, just an inch away...
    ~
    2 months exactly since my surgery in Taiwan. Huge patches of pain in the back still, and no real progress or sensory improvements, bladder/bowel/sex. I will be doing therapy in Brasil, in April, as the insurance scene here is very slow to approve of my phys. rehab. and I'm not content to wait it out. Can't tell if I AM incomplete, though I have much more sensation everywhere than before surgery; all the docs I've met since I got back look at me like, 'we can't say this but you're fooling yourself if you think...'

    I will put myself through phys. therapy and see what happens, maybe something'll kick in. You hear so many success stories about supported ambulation et al, yet I'll be about the last guy on earth to qualify and recieve it, so I've got to seek alternatives in the meantime.
    ~
    I can't tell if I should continue posting here on whatever takes place or doesn't, or just let it go. Everybody wants to know 'v, what's going on,' daily updates but the truth is, I'm not continually improving, step by step gradually upward, I seem to have... flattened out. And I don't really feel good, beyond the raw phsyical discomfort and constant agitation. I feel like...
    ~
    Still getting weekly reports from Lisbon, Brasil, Japan and Russia, but I'm not saying shit until something is published. I do wish the others, and some regular visitors here, would update, but that's their business.
    ~
    So let me ask you, shall I continue to post here whatever and whenever, good bad and ugly, or allow the thread to die? I began this thread as a service to the community, but if I've out-lived my usefulness, somebody let me know, and I'll let everybody move on.

    'There is nowhere to go but where you're at,' and today, I'm stuck in the valley...

    vgrafen

    [This message was edited by vgrafen on Mar 10, 2002 at 02:47 PM.]

  5. #125

    Vgrafen

    You might get a better response at this point if your thread was now posted in the 'Life' or 'R&S'forum?

    Advice from others who are or have gone through similar situations might be more forthcoming than the general 'Cure' readers. I think you have to ask yourself whether the thread still has 'cure' relevance or is, what you're now experiencing, more 'life', 'R&S' related?

    Just a thought, good luck.

  6. #126
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    Dear vgrafen -

    You're a pioneer for a cure, so you're taking all the arrows for us. Thanks for what you're doing, and I hope you keep posting your updates here, in the CURE FORUM.

  7. #127
    Senior Member kate's Avatar
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    random response

    Well, v, you always manage to get at something in me that needs to be nudged, so I for one hope you'll keep posting the narrative of this ride as it develops, peaks, valleys, and all that dull shit in between.

    I respect your wife for letting her black hours be out there for what they are; it's too easy to hold back that stuff for the sake of someone else's peace of mind. But, ah, it IS her stuff. It's possible that it's a little bit disrespectful to think you're to blame for her choices. Don't mean to get preachy . . . I miss my man as he was, oh, God, and so do our kids, but what we love in him is also still so much there. This feels already like none of my business, so I'll give it up. Just know that your voice on the CURE forum is irreplaceable.

    Kat

  8. #128
    Senior Member Jeff's Avatar
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    Well, VG

    I think Chris is right that you could certainly start some useful threads on the Life/R&S Forums. You could take a break from this thread for a while as you wait to see how things go and if there are any changes. I'm sure you'll know when there's something interesting to report, or just to give us a status every other week or so.

    Thanks for all the information you've shared so far. If you get any regenerative effects those will likely come later, anyway.

    Hang in there!

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  9. #129

    my soul doesn't feel good

    vgrafen,

    The joy and the sorrow of a deep relationship is sharing the good times and the bad. You know as well as I do that SCI is definitely one of the bad. When you're both down at the same time, the spiral into depression is easy. After 5 years of experience, I've found that I can change the direction or at least level things out with some effort on my part. I don't do it for me. I do it for him. I'm not saying to hide the pain. Sharing is critical. Share the humor too. Sometimes, just an "almost funny" is enough to make the difference. You're in it together, whether it's tears or smiles you share at any specific moment. If you try to make her soul feel better, yours will too.

    Thank you for posting information about your surgery and its results. It seems cruel that we can lose so much in a heartbeat and have to fight so long and so hard to get any return. Your courage and integrity in reporting the results, physical and emotional, give me hope that there will be a cure for all of us someday.

    rtr

  10. #130

    Dark Times

    Vgrafen,

    When I got to the point that going to medical types was making me feel worse instead of better, I stopped. Now I was able to do that and I know you may not be, but to the extent you can, maybe you should back off and give your mind, the only thing you begin to have any control over, a rest from the battle. I'm not saying quit, give up. I'm saying change the channel for a while.

    I realized I could only put so much on my spouse and then I needed to find some other means to deal with my sorrow. My spouse needs me for moral support as much as I need him, and I wasn't able to hold up my end of the board, much as I wanted to. I needed both a mental respite from my constant worrying and sorrow and a place to expunge my thoughts verbally. Friends can only offer so much. She needs to look for help in dealing with her sadness in other places besides your enthusiasm.

    I'd had counseling before for life situations that were easy compared to this one. They had really very clear solutions compared to this one. But dealing with a situation without a clear solution takes many of the same methods as dealing with a problem where there is a clear solution. She needs to get herself some help that doesn't depend on you both for her sake and for yours.

    Post here or not. You have friends who like to see you when you feel like being seen.

    BTW, I lived in Vallejo up until 2000. We're close to Yosemite now.

    Calico

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