Where is Gooserider?

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You probably already know this, but there are a bunch of support groups on the internet that might lift your spirits. My adopted son has Duchenne's muscular dystrophy, and participating
on some of those email lists has helped me many times if only to realize that many other people are going through/coping with some of the same issues as my family. Yahoo groups
have provided us lots of information about services, funding, daily living tips, etc.

Also, http://www.disabledonline.com/ is a social networking site that has some good people on it.

Hang in there.
 
Flatbedford said:
Have I been overlooking something somewhere? This hasn't been updated in 6 weeks. I hope all is well.
Click to expand...

i thought the same. i haven't heard anything since the first part of the bathroom build. soooooooooooo what's going on?
 
Mary-Anne and I are active on a couple of the support groups, with mixed results, they are helpful but not all that much - and sometimes negatively when there are dozens of posts from folks complaining about the same sorts of pain that I'm experiencing, and not reporting anything to be particularly helpful...

FB - I sent you a PM a while back on our progress, sorry if you didn't get it. At any rate, I now have a ramp, and there has been a second phase on the bathroom build, we now have all the rock up in the BR, along with the wider door. We still need to do / get done with a skim-coat of plaster, paint, and finish molding (around the door and window, plus baseboard) in addition to taking care of the electrical stuff. (Not sure when that can be dealt with...)

Gooserider
 
Goose, take things seriously when it comes to the pain and overcoming the obstacles that are in your way. I speak from experience.... As for the pain, one thing I learned was that it is better to take enough pain medicine to knock it out than to keep going on and on with the pain. The reason is that it is making your life miserable. I worried about becoming hooked on the pain meds so held back. It finally put me into a severe depression, which almost ruined my life completely. Please, don't let yourself go in that direction. Seek professional help early rather than late. Deal with all of your problems; not just the physical ones. Good luck to you.
 
Goose . . . sorry to hear things are not going so well . . . but hang in there . . . you have friends who haven't forgotten about you and who care for you . . . and don't be afraid to jump in on any of those threads . . . I think of you every time I see someone asking technical questions about hydraulics and woodsplitters . . . topics which make my head spin.
 
Gooserider said:
Mary-Anne and I are active on a couple of the support groups, with mixed results, they are helpful but not all that much - and sometimes negatively when there are dozens of posts from folks complaining about the same sorts of pain that I'm experiencing, and not reporting anything to be particularly helpful...

FB - I sent you a PM a while back on our progress, sorry if you didn't get it. At any rate, I now have a ramp, and there has been a second phase on the bathroom build, we now have all the rock up in the BR, along with the wider door. We still need to do / get done with a skim-coat of plaster, paint, and finish molding (around the door and window, plus baseboard) in addition to taking care of the electrical stuff. (Not sure when that can be dealt with...)

Gooserider
Click to expand...

hey goose
i'll take a swing by friday or monday. pm me your phone number i misplaced it. i'll give you a call before i come down on one or both days. and give me a idea what time is good for you. thanks.
 
Hopefully the pain will get to a managable level Goose. Pain is power though, let it heal you. Too many people look at pain as the enemy, it is not. Good luck, Randy
 
Backwoods Savage said:
Goose, take things seriously when it comes to the pain and overcoming the obstacles that are in your way. I speak from experience.... As for the pain, one thing I learned was that it is better to take enough pain medicine to knock it out than to keep going on and on with the pain. The reason is that it is making your life miserable. I worried about becoming hooked on the pain meds so held back. It finally put me into a severe depression, which almost ruined my life completely. Please, don't let yourself go in that direction. Seek professional help early rather than late. Deal with all of your problems; not just the physical ones. Good luck to you.
Click to expand...

I'm on all sorts of stuff for pain, trouble is a lot of it doesn't work all that well far as I'm concerned.... Just as a partial list of the pain stuff that I take daily includes Fentanyl (as a patch), Gavapentin, Tyzanadine and Lyrica. I also have Oxycodone, that I take if stuff gets really bad, but I don't take it if I can avoid it as it makes me stupid - this is the trouble I've found with the pain pills I've tried so far, either they don't do anything or they put me to sleep and / or fry my ability to think clearly... Doesn't seem to me like it helps to kill the pain if the drugs that do it ruin your life themselves...

I do have an appointment in a week or so to see a "pain doctor" but I have my doubts, as one of the things that my pains do match up with is the "phantom pains" that many spinal injury patients report in the support groups where there doesn't seem to be any identifiable cause, and often the pain is below the level of injury - similar to when amputees report getting pain sensations from the missing limb - and these pains are both severe and non-responsive to medications....

Gooserider
 
I'm very sorry to hear about the pain. It can be totally attention consuming. Have any of the therapists discussed farabloc fabric?
http://www.farabloc.com/ I don't know if it would help, but maybe it's worth contacting them.
 
Goose; I was involved in an auto accident in 91 & wound up with fibromyalgia. While I am not comparing my pain with yours I was nevertheless in agony for many years. My body was awakened with many trigger points pulsing it seemed, & to say this hurt like hell is an understatement. What calmes this down is finger pressure into the trigger points & the trigger point is the small point area that hurts the worst. You can not run from the pain, you need to face it head on(take as few drugs as you can). I realize you have some phantom pains & hopefully this would help too. I bought a good massage chair & removed the back cushin & just grinned & beared it. As explained to me lactic acids are trapped in the tissues etc & hurt like hell. As you start to heal & relax you will get a popping or cracking feeling in the muscles & you will have some relief. best wishes, Randy
 
Pain meds, in general, are best used short term. As we saw with Rushbo and other opiate users, after a while some people take hundreds of doses per day and still don't alleviate all the pain. I once read the amount the the guy "confessions of an english opium eater" used, and it was also hundreds of "normal" doses per day.

That makes it tough - when something does a worse job when you take more and more.

Personally, though, I don't mind the stupid part. I suspect, Goose, that you have brain cells to spare.
Of course, you could also become a writer:
http://en.wikipedia.org/wiki/Opium_and_Romanticism

"With respect to literary triumphs, De Quincey notes in Confessions of an English Opium-Eater how the increased activity in the brain because of opium increased his ability to create new things out of raw material"

I have my own theory that every human being responds differently to the pleasures or pains of opiates, alcohol and other such things.

I never found pot to have any pain killing effects (probably the opposite), but it's worth a try if others in similar condition report success.

I assume you have worked with hot baths, massage, etc....all of which can help.

I think you will eventually work out a regimen which suits your body and mind..hopefully sooner than later.
 
Goose, drugs are for sick people. You are still very sick right now. Use the drugs that they will give you to suffer less. You will get used the narcotic effect shortly, and be able to think. As you heal and strengthen, you can change your medication regimen.
 
Me and my main mechanical fantaziser desined a similar systen years ago, not for the infirm, just for those that needed more lifting power. Long since then, others created said devices. I don't think this is unrealistic at all today, with light weight batteries, etc. I really do not see why we couldn't come up with something, other than patent issues. That's it, Goose, eat that hydrocodone, and dream large.
 
Singed Eyebrows said:
I was involved in an auto accident in 91 & wound up with fibromyalgia. While I am not comparing my pain with yours I was nevertheless in agony for many years.
Click to expand...

I suffer from chronic pain that is fibromyalgia-like in nature (I don't have the classic tender points). Chronic pain is no picnic to live with. I feel bad for you, Goose, that you are plagued with this after everything else you've had to endure since your accident. I haven't commented on your situation before, but I've been watching it here as it developed from the beginning. You seem to have been handling this in a way I don't feel I'd have the strength to do, and your positive attitude throughout and your sense of ironic humor about it all have left me with a feeling of respect for you, and encouragement for me to stop whining to myself about hurting all the time.

Now it appears that pain is trying to defeat you. Don't let it, you're too strong. New research is happening all the time, and you haven't yet exhausted all the resources that are available to help you.

Give acupuncture a serious try. Go to someone trained in and immersed in Oriental medicine and philosophy. Years ago, a good friend had to have his thyroid removed because of cancer. They had to let his thyroxin levels drop for thirty days for some reason I can't recall. Every day he got weaker. Finally, he asked me to drive him downstate to visit the wife of one of his Tai Chi instructors who was a training practitioner of eastern medicine. I decided to get a treatment for my severe carpal tunnel. The pain had gotten unbearable due to all the wood I was handling at the time (10-12 cord/year). I couldn't even pick up a split in one hand without dropping it. After the treatment, I went home and started to stack some wood. I instantly realized that I could grab and hold a large split like I could when I was a young man. The pain was gone. I could play guitar again without my numb fingers hitting strings I didn't want to hit. I could eat my lo mein with chopsticks without dropping it all down my front.

The treatment lasted about two weeks, and in a month I was back to the same shape as before, so it was no cure by any means. When I went to go back for another treatment, I found that this skilled practitioner was no longer allowed to practice in NY state and had to move elsewhere.

Give it a try, Goose, it can't do much harm except to take another avenue of hope away if it doesn't work. Find a traditional practitioner with a good reputation in the alternative medicine community and get a series of treatments. The Amherst area seems to be a Mecca for alternative medicine. A skilled acupuncturist won't try to just fix a specific "boo-boo", but will try to re-establish the proper channels so that nerve conduction and sensory input get closer to normal again. I'll speak for myself and some others here, we'll chip in with the financial part of it if is isn't covered by your insurance.

At any rate, keep showing us the grit you have shown already and don't get more despondent, because that's a tougher abyss to climb out of than just pain itself. Like others have said, you're still very sick. Think "heal". My wife Rose and I send our sincere hope that your condition will begin to improve soon.

Dan
 
I am an unknown on this forum, however, I have read this thread from start to finish.

I have a father in-law who suffers from serious chronic pain. He was the type of man that did everything himself his entire life. From oil changes to renovations around the house.

He was involved in a terrible accident and broke his back in several places pinching his spinal cord in 2 spots. The chances of risk-free surgery are 0%. He took the choice to live with the pain. That was 10 years ago. He is currently on Fentanyl (patch) and has liquid morphine for the worse days.

Goose: what strength patch are you on??

Andrew
 
Gooserider said:
Backwoods Savage said:
Goose, take things seriously when it comes to the pain and overcoming the obstacles that are in your way. I speak from experience.... As for the pain, one thing I learned was that it is better to take enough pain medicine to knock it out than to keep going on and on with the pain. The reason is that it is making your life miserable. I worried about becoming hooked on the pain meds so held back. It finally put me into a severe depression, which almost ruined my life completely. Please, don't let yourself go in that direction. Seek professional help early rather than late. Deal with all of your problems; not just the physical ones. Good luck to you.
Click to expand...

I'm on all sorts of stuff for pain, trouble is a lot of it doesn't work all that well far as I'm concerned.... Just as a partial list of the pain stuff that I take daily includes Fentanyl (as a patch), Gavapentin, Tyzanadine and Lyrica. I also have Oxycodone, that I take if stuff gets really bad, but I don't take it if I can avoid it as it makes me stupid - this is the trouble I've found with the pain pills I've tried so far, either they don't do anything or they put me to sleep and / or fry my ability to think clearly... Doesn't seem to me like it helps to kill the pain if the drugs that do it ruin your life themselves...

I do have an appointment in a week or so to see a "pain doctor" but I have my doubts, as one of the things that my pains do match up with is the "phantom pains" that many spinal injury patients report in the support groups where there doesn't seem to be any identifiable cause, and often the pain is below the level of injury - similar to when amputees report getting pain sensations from the missing limb - and these pains are both severe and non-responsive to medications....

Gooserider
Click to expand...


Sorry to hear about the meds not being all that great, Goose. Looks like you're doin' OK otherwise. Might I recommend Tylox. I took one, just ONE is all my days when I had an amulatory surgery, it was a horse pill sized thing, but man it was the most blissful 4 1/2 hours of my entire life. It'll put you out and maybe that's what the docs are trying to prevent, to keep ya like half functional, what with knowing that tya use sharp tools and what not :) . But look into and ask about the Tylox, you'll be glad ya did.
Hang in there buddy...............
 
Thanks for the comments SwedishChef, sounds like you are doing fairly well here judging by your post count... My Fentanyl patches are the 100mcg/hr size, that are supposed to be changed every 72 hours... I've had a couple of times when I've missed a change, and gone 4 days or more, and haven't noticed a big difference, nor do I see much difference in the way I feel when I change out an old patch for a new one.... Biggest thing I find with the patches is that they are a real pain to get - the gov't says they are super nasty drugs and requires that I have to have a brand new hard copy permission slip from the Dr. before the local gov't licensed drug dealer (CVS) will sell them to me. All the other drugs I can get refills on, and just have the Dr. call the pusher to have the scrips renewed... (If the illegal guys would just get their act together on better quality assurances it would be tempting to use them just because of the lower hassle factor... :coolsmirk: )

Interesting suggestion for the Tylox Woodman, but it sort of demonstrates the problem I have - I don't want to be "Blissed Out" - aside from being a good way to get hurt further, I generally don't like reducing my mental functionality - my ability to think clearly and sharply with good logic and so forth is one of my most prized abilities (If picking role models off the old Star Dreck cast, I'd want to be like Spock, no doubt about it...) so I really don't want something that zones me out to any noticeable degree, so what I want is something that lets me think without hurting.... Zone out is easy, I've already got pills that will do that to me, but they make me stupid at the same time which is not something I want.... Puts me in a really tough spot - either I get pills that stop me from hurting, but also stop me from thinking, or I don't do the pills and hurt enough that it keeps me from being able to think....

At any rate I will be seeing a pain specialist MD on the 5th, hopefully he will be able to figure out something that works, though frankly I don't have huge hopes - some of the stuff I've been experiencing matches the descriptions given by other folks on a Spinal forum with comments that meds don't help. The other big problem is that I don't have one single "big issue" pain point, rather I have a whole long list of stuff that is mostly pretty minor when looked at individually, but have a cumulative total that grinds away, and which do a sort of rotating "tag team" deal where one thing will stop hurting for a while, but something else will take over in it's place...

(Note when I say that zone-out pills will get you hurt worse, I'm not just talking about doing dumb things w/ power tools, etc. but the far more problematic things of over straining parts because you aren't getting pain messages, or getting pressure sores because you forget to do pressure relief when you should (or sleep through it), which is a severe risk for those of us with injuries like mine....)

Gooserider
 
Yeah- the great compromise! Either a tolerable pain level and remaining lucid or no pain and total bliss, uncoordination and potentialy wanton behaviour. Reduces a man to asking why he can't have it all...................
 
Battenkiller said:
Singed Eyebrows said:
I was involved in an auto accident in 91 & wound up with fibromyalgia. While I am not comparing my pain with yours I was nevertheless in agony for many years.
Click to expand...

I suffer from chronic pain that is fibromyalgia-like in nature (I don't have the classic tender points). Chronic pain is no picnic to live with. I feel bad for you, Goose, that you are plagued with this after everything else you've had to endure since your accident. I haven't commented on your situation before, but I've been watching it here as it developed from the beginning. You seem to have been handling this in a way I don't feel I'd have the strength to do, and your positive attitude throughout and your sense of ironic humor about it all have left me with a feeling of respect for you, and encouragement for me to stop whining to myself about hurting all the time.

Now it appears that pain is trying to defeat you. Don't let it, you're too strong. New research is happening all the time, and you haven't yet exhausted all the resources that are available to help you.

Give acupuncture a serious try. Go to someone trained in and immersed in Oriental medicine and philosophy. Years ago, a good friend had to have his thyroid removed because of cancer. They had to let his thyroxin levels drop for thirty days for some reason I can't recall. Every day he got weaker. Finally, he asked me to drive him downstate to visit the wife of one of his Tai Chi instructors who was a training practitioner of eastern medicine. I decided to get a treatment for my severe carpal tunnel. The pain had gotten unbearable due to all the wood I was handling at the time (10-12 cord/year). I couldn't even pick up a split in one hand without dropping it. After the treatment, I went home and started to stack some wood. I instantly realized that I could grab and hold a large split like I could when I was a young man. The pain was gone. I could play guitar again without my numb fingers hitting strings I didn't want to hit. I could eat my lo mein with chopsticks without dropping it all down my front.

The treatment lasted about two weeks, and in a month I was back to the same shape as before, so it was no cure by any means. When I went to go back for another treatment, I found that this skilled practitioner was no longer allowed to practice in NY state and had to move elsewhere.

Give it a try, Goose, it can't do much harm except to take another avenue of hope away if it doesn't work. Find a traditional practitioner with a good reputation in the alternative medicine community and get a series of treatments. The Amherst area seems to be a Mecca for alternative medicine. A skilled acupuncturist won't try to just fix a specific "boo-boo", but will try to re-establish the proper channels so that nerve conduction and sensory input get closer to normal again. I'll speak for myself and some others here, we'll chip in with the financial part of it if is isn't covered by your insurance.

At any rate, keep showing us the grit you have shown already and don't get more despondent, because that's a tougher abyss to climb out of than just pain itself. Like others have said, you're still very sick. Think "heal". My wife Rose and I send our sincere hope that your condition will begin to improve soon.

Dan
Click to expand...
I hope the accupuncture keeps working for you even if needing to find someone else. I had read though a comment by someone years ago that accupuncture needles take over the damage where the drugs leave off. What is needed is the flow of power through the damaged tissues & the needles prevent this(the pain is there because the power is being forced through). I know this is a catch 22, damned if you do damned if you don't. Good luck with your pain management. From reading your post it sounds like you will get this handled, Randy
 
I haven't been here in many months and just saw this thread. I am slack jawed!

If there is a thread or link to help financially, somebody please send me a link.

Goose, I'm thrilled you are home and hopefully that tree has been dealt with by now.

Mary Anne, you are a special lady!
 
I too have just learned of your accident Goose. I am not very active on the forum in the summer and rarely stray from the boiler room but the high post count
caught my eye.
It can happen to anyone and happens when you least expect it!!!

I skimmed through this thread to get up to speed on your recovery and it sounds like it will be a long road. Keep your spirits up and keep working at it.

Are you set for the upcoming heating season? Still able to burn wood?

Wish you well
Kabbott and family
 
Goose,

From what you've told me, you may want to look at changing the dosage (in consultation with a pain specialist of course). Most people don't even know what fentanyl is. I always tell them: Fentanyl is approximately 100 times more potent than morphine. That means that 100mcg of fentanyl has the same effect as 10mg of morphine for anaesthetic applications. I remember reading an article where some thugs broke into a pharmacy and got their hands on some patches. They opened one, licked it. DOA. OD'd in a matter of minutes. They took in 5 seconds what your body should get over a 72 hours period.

The government is right, it is a powerful drug. In Canada, you can have a renewing prescription. My father in-law gets 10 patches at a time and has to renew the precription every 3 months. He's one of 2 patients in my community who take it.

Maybe you need to get your dose looked at again?? The reason I say this is the following: my father in-law has the 25mcg patch. If he misses his "patch change day" by 1 day, he would be climbing the walls. The first day he puts it on, he is wide awake all night. The second day he sleeps a bit and the third day is OK as well. He always changes the patch at 10 AM. If it's 4 PM and he has not changed it, he can feel it. The dr wants to wait before bumping him up to the 50mcg level. Fentanyl is one of the strongest pain killers out there. It's used for pain killing in terminally ill cancer patients.

I remember the first day he took the patch: he was in the fetal position shaking violently for about 3 days. Then his body started getting used to it.

I wish you all the best.

Andrew
 
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