66 replies to this topic

[roykelly2]

This may be just a whinning session but then again we are entitled to one now and then aren't we? I am laying in bed as usual and I'm having another horrible day of increased pain due to the storms that are headed our way. The TV is blasting like usual and my family is doing there thing. The daughters in her room doing her thing and my Loving wife is on the couch in the livingroom working on her book. My sons at work and then off to the university for classes. They all love me and need me for what I don't get on some days like today, but I know they care. But I'm still in the same place I am always at every day in practically the same position I am always in. The left side of the bed,propped up on pillows with a several urinals by the side of the bed. A 2 litre bottle of cola next to my 1 litre large mouth drinking bottle on the bed side table just in reach with my cigarettes and ashtray on the ledge below that so everything is conveniently set up for me. And here I lay in misery once again reading everones posts about mis treatment by emergency rooms staffs and ignorance and remembering every time I suffered through the similar abuse and neglect from those I sought out for salvation and relief from the never ending pain and suffering. How many times I have thought how easy it would be just to end this once and for all, but stop myself because of the Love I have for others. For those dearest and closest to me. There is no easy way, and so the battle continues. I need to have someone close to me but at the same time I don't want to stop them from what they are currently doing. Just to comfort me for a few minutes. I am such a pain, my wife takes care of all my needs and I keep her jumping up and down and I hate bothering her. So what do I do. I guess I just type out some frustrations and pain and whinning and send them to you. I hope it isn't wrong and I hope I'm not on the wrong site, but I might send this out any how.I know this isn't helping anyone manage pain and sounds alot like something or someone who needs counseling, but really. I have had all the wonderful counseling from people who really don't have a clue. They can be as sympathetic as they want but until you suffer continuously with pain that even with all the pain meds is still there they don't have a clue. Thus the battle to make it through just another day goes on. Just the same as it will tomorrow and the next day. Thanks for listening and I know alot of you out there get it.

Edited by roykelly2, 25 September 2010 - 10:01 PM.

[Soryfam]

Hi. We all have days like the one you're having. Sometimes they last a day, sometimes a week. I find I have better luck if I set small goals for myself each day, and try to get involved in some new activity. (Be it a game, a hobby, a good book, whatever.) I know it feels like you're falling down a black hole. It's good to talk to us here, and if possible, let your family know how you feel. I tell mine when I feel like I'm just not able to contribute enough to our family dynamic. I think they see that physically I am healing, and don't think about how we're feeling mentally. The more you can talk about it, the better it feels.

Good Luck to you.

Sandy

[mcwriter]

He does talk to all of us, and it's hard when we are both down at the same time. I can't relieve his pain and the only thing is to talk and then try to do something to distract him from the pain. You're right about the black hole, it can suck you in and it's hard to climb out of.

Hearing from people who really understand does make a difference. Thanks, for your post Sandy.

[roykelly2]

Soryfam, on 25 September 2010 - 10:12 PM, said:

Hi. We all have days like the one you're having. Sometimes they last a day, sometimes a week. I find I have better luck if I set small goals for myself each day, and try to get involved in some new activity. (Be it a game, a hobby, a good book, whatever.) I know it feels like you're falling down a black hole. It's good to talk to us here, and if possible, let your family know how you feel. I tell mine when I feel like I'm just not able to contribute enough to our family dynamic. I think they see that physically I am healing, and don't think about how we're feeling mentally. The more you can talk about it, the better it feels.

Good Luck to you.

Sandy

Thank You. I know alot of us go through this and it's just getting through the real bad days that are important. I just haven't been able to shake myself out of this rut I'm in recently, and now my wonderful wife seems to be exhibiting signs of depression her self. Atleast I know we can talk about it and work through it, and when we get to down we have wonderful people like you who can give us, me a boost. Thank you again. Roy

[Wheelsonfire]

Alrighty then, what you need my friend is a good kick up the ass to get you moving.

Too whingy to fill your profile, advise to ask the wife cause you can’t be bothered, the wife’s profile has a beautiful image but that was helpful to no one in relation to your injury.

You are in a down place, it is up to YOU to get your ass out of bed.

It is up to YOU to make the most of it.

It is up to YOU to make a life from here.

YOU are SCI now, this will not change.

YOU need to get your head around your new lifestyle and bite the bullet or swallow it, the ball is in YOUR court my friend.

And what I will NEVER understand is the crapola coming out of YOUR mouth saying YOU want to end it when YOU have so much to live for.

My words may seem harsh, trust me, snap out of it before YOU bring them ALL down with YOU

Regards

[qbounce]

There are certain things you can do to help yourself while healing. Start a journal . . . writing/typing these thoughts down can be so therapeutic when releasing all the crap your feeling.

Hey man, aren't you nursing a pressure sore or two? What the hell are you smoking for? Cig's don't help your skin condition at all. When I was at the flap surgery hospital, there was a regular there the nurses all called, Papa. He was on his 7th ass surgery, and lost his legs up to his knees to borrow the muscle and skin needed to close up the last couple of ulcers. He finally listened to the doctors this last time and quit, but only because he's got no skin left on the front or the back of his butt.

I was going to go on about the Cola too, but I'll just leave it at that. Everyone needs ONE vice. haha

Edited by qbounce, 26 September 2010 - 12:10 AM.

[rue2you]

I guess I have to agree with WOF, my friend. Not because I want to be mean or seem non-caring, but my experience is that whining sessions lead to nowhere except feeling more sorry for ourselves. Also, there are a LOT of people on here with even higher levels of paralysis that are doing much more with their lives than laying in a bed smoking and drinking coke. I think there are probably very, very few on here that don't deal with pain every single day. I promise you that pain is much worse when you lay and dwell on it. Honestly, the days I want to stay in the bed the most are the days I make myself do something and it has never failed that it helps. Mostly because it keeps your mind busy and distracted.
I don't know how long you have been paralyzed, but your biggest obstacle is not your body that doesn't work right - it is you who isn't thinking right! Your attitude about all of this is the one thing that you can change! Your wife should be doing very little for you. You do not need to be a victim - be an overcomer!! Come one now, you can do this!!

[Tetracyclone]

Your pain will decrease after awhile if you drink water, breathe nice clean air, and force yourself to move around as much as you can. That will let the air and water circulate to your cells.

Cellular waste products collect in tissue and liver and kidneys cannot do their jobs of cleaning up the pain causing gunk without constant feeds of water and air. You actually have to force yourself to breath deeply. that is what chi gong and yoga are about. Take out the garbage = feel better.

Is this the cause of your particular pain... well, you cannot know until you take out the garbage.

Good luck friend. We all go through gloom and doom periods and I, for one, am glad to hear you whine. It is the most necessary first step on the road to recovery.

[mcwriter]

Not sure if I should nose in here, but I know he and I both have communicated with several people on here who are aware of his condition. I didn't realize that he still hadn't filled in his "About Me" tab, but I will remind him. The following is the best sequence of events as I can recall at the moment...

His injury happened 1994 when he was a nurse, lifting a 350 lb. double amputee patient with a transport person onto a gurney. The transport person let go leaving Roy extended across the bed holding the full weight of the patient so he wouldn't fall on the floor. He basically blew out a few disks for which they said after a diskectomy he would be back to work in 6 weeks. Yeah, right.

The doctor who did that one also did a laminectomy, (apparently just because he felt like it while he was in there) leaving bone pieces inside. The next surgery was to remove those. The next surgery was for a fusion and to add hardware. The next surgery was to remove the hardware and also somewhere in there a bone stimulator for the fusion. there were I think 7 or 8 surgeries altogether.

Meanwhile, during one of the surgeries with the hardware he got an infection. It was nearly a year of heavy-duty antibiotics one after another and in combo not to mention the good ol' central line that infiltrated when by chance one of the areas of the infection burst. Roy, having the clarity of mind at that moment, caught a sample and we took it to the doctor who had to send it off to several places for identification which finally ended up at an infectious disease center in Texas that finally identified it as mycobacterium fortuitum which is a tuberculosis "like" sneaky thing. It finally went dormant, but there is nothing to kill it, and it could still pop up again at any time and none of the previously tried antibiotics will touch it now. Hence, doctors have refused further surgeries because of the risk he wouldn't survive if the mycobacterium fortuitum decides to rear it's ugly head once again. We have found out recently that he is now allergic to two of the antibiotics he took for that. Great.

In addition to that the bone stimulator also really did a neat job in narrowing nerve passageways which has resulted, for example, where the sciatic nerves pass through should be about the diameter of a man's thumb, where Roy's openings are the size of less than half of a dime, so the nerves are in a state of constant inflammation. Bending at the waist is horrible, his legs and feet are in constant pain except for the outsides of his feet which are numb. His doctors actually nixed on much physical therapy after a while as pain worsened because therapy exacerbated everything. He gets all those lovely sensations you all describe in his hips and legs, the dog-bites, stabbing, burning, tingling or his legs will go numb.

So, his condition went from actually not too bad with a vicodin or two, to over the years it has worsened so considerably that sitting upright in a chair for more than 15 or 20 minutes has to be darnwell worth the reason, for the added pain he suffers afterwards, not to mention walking which started out not too bad in the beginning for short distances, but now his balance sucks, he uses a cane and just going through the house the short distance to the bathroom is a scary undertaking. On rare occasion when we do go somewhere that might require some distance, he has a scooter. Shorter distances he just leans his other hands on one of us. Of course, his knees will give out at random, so there's that.

He has bowel issues, and we did finally figure out with a double dose of Generlac solution and he can actually poop though it is not as frequent as we would like. Diverticulitis doesn't help that matter. He has spasms very frequently, all over his body, if he is touched while sleeping or just some good ol' full body spasms, which are a whole other ballgame. He was borderline on the sleep study, they didn't think the machine would help. He can't sleep for more than a couple of hours at a time. His pain is in the lower lumbars, sacrum and hips and then all the way to his feet, his nerves feel like ropes in his legs and he has lost really a lot of muscle in his legs, even though he writhes or twitches alot. He does try to do some exercises in bed.

Anytime he does leave the house, which is not often, the recovery period for that little activity takes a minimum of several hours to a good two days or so for him to recover. And I'm talking just going out to one small store or even just a ride in the van. Just taking a shower with help and he has to recover for a few hours from the activity and sitting up in his showerchair. His doctor's office is very good about not making him wait in the waiting room very long, they get him to a room pretty quickly so he can lay down.

Besides all of that, he has heart issues, and Type 2 diabetes that run in his family. And his immune system generally sucks. If the kids or I have a 24hr cold or flu, he gets it for a good two weeks. A neighbor kid comes in our house and coughs or sneezes, and Roy's got it for a week. His immune system has never been the same since the infection.

Yes, I know about the cigarettes. He has smoked for over 30 years. Got him to use the patches, and he came pretty close to quitting, but a longer program probably would've worked better. The cola? I know, he grew up on it. I haven't given up on those. But here's the dilemma...He has so few pleasures at all. I know it's stupid, but how can I 'make' him quit smoking and drinking the cola? We've been through the health discussions over and over....What he really needs is a sense of purpose, something to do to use his brain, but then tiredness and pain take over. A feeling of purpose, I believe would lift his spirits, and I think then he could follow through with more healthful choices. His entire life he has always served others in healthcare and now he thinks he can't. Ideas?

Maybe this is a better picture of what Roy skipped telling you about. It's my version anyway...he's not a very good typist-ha. Anyway, like he said, he is in a down-trend right now and I do get to the point where I know I don't have the answers so I follow him right down into the black hole because I can't fix it. Then we try to help each other climb back up.

I guess let me know if anything was unclear. Thanks.

Edited by mcwriter, 26 September 2010 - 05:09 AM.

[Wheelsonfire]

Ah now I see.

I think it commendable that you rescue your husband from the big bad woofy.

He needs to stand on his own two feet, he voiced and left himself open to criticism yet his wife has to step up to the plate.

It says it all to me.

He could have at least voiced while you typed and ya could have put down

(typed by mcwriter) oh I do miss Norma.......

Everyone here has a story, a story of equality and one that surpasses that of your husband.

It doesn’t change the fact that he needs to change his frame of mind.

This will NOT happen if you come to his rescue each and every time.

I can give you my story which will belittle his but I shall refrain.

Help can hinder.

I am by no means belittling your efforts, he needs to get to grips and soon or things will get worse.

Kind regards

[mcwriter]

---smile---

...keep kicking...

[mcwriter]

--------------(as dictated by roykelly2 typed by mcwriter, the wife):

"Okay you bastards...just kidding, I thank you for your kind words of encouragement and community spirit in beating a man to pieces while he's down, but hey? Whatever works, huh?

I've spent my life helping others who couldn't help themselves with no complaints because it was always better to give than to receive, but I find now, being on the receiving end that it is true, it is always better to give than to receive.

I'll get by and get over this as I have for the last 16 years, I'll pick myself up and shake it off and I'll keep going. It's what I do. I've got a great wife and family who are there for me whenever I need them and I've got a great group of acquaintenances that I can chat with if I get to feeling down, I see.

Thanks again, bye.

P.S. I would've typed this myself, but due to the arthritis flare up in my left shoulder today, I was unable to pick up my laptop. My wife happened to be sitting here next to me on her laptop and she is a much better typist and she loves me."

--------------as dictated by Roy----------------

Edited by mcwriter, 26 September 2010 - 08:04 PM.

[mcwriter]

mcwriter, on 26 September 2010 - 04:39 AM, said:

Not sure if I should nose in here, but I know he and I both have communicated with several people on here who are aware of his condition. I didn't realize that he still hadn't filled in his "About Me" tab, but I will remind him. The following is the best sequence of events as I can recall at the moment...

His injury happened 1994 when he was a nurse, lifting a 350 lb. double amputee patient with a transport person onto a gurney. The transport person let go leaving Roy extended across the bed holding the full weight of the patient so he wouldn't fall on the floor. He basically blew out a few disks for which they said after a diskectomy he would be back to work in 6 weeks. Yeah, right.

The doctor who did that one also did a laminectomy, (apparently just because he felt like it while he was in there) leaving bone pieces inside. The next surgery was to remove those. The next surgery was for a fusion and to add hardware. The next surgery was to remove the hardware and also somewhere in there a bone stimulator for the fusion. there were I think 7 or 8 surgeries altogether.

Meanwhile, during one of the surgeries with the hardware he got an infection. It was nearly a year of heavy-duty antibiotics one after another and in combo not to mention the good ol' central line that infiltrated when by chance one of the areas of the infection burst. Roy, having the clarity of mind at that moment, caught a sample and we took it to the doctor who had to send it off to several places for identification which finally ended up at an infectious disease center in Texas that finally identified it as mycobacterium fortuitum which is a tuberculosis "like" sneaky thing. It finally went dormant, but there is nothing to kill it, and it could still pop up again at any time and none of the previously tried antibiotics will touch it now. Hence, doctors have refused further surgeries because of the risk he wouldn't survive if the mycobacterium fortuitum decides to rear it's ugly head once again. We have found out recently that he is now allergic to two of the antibiotics he took for that. Great.

In addition to that the bone stimulator also really did a neat job in narrowing nerve passageways which has resulted, for example, where the sciatic nerves pass through should be about the diameter of a man's thumb, where Roy's openings are the size of less than half of a dime, so the nerves are in a state of constant inflammation. Bending at the waist is horrible, his legs and feet are in constant pain except for the outsides of his feet which are numb. His doctors actually nixed on much physical therapy after a while as pain worsened because therapy exacerbated everything. He gets all those lovely sensations you all describe in his hips and legs, the dog-bites, stabbing, burning, tingling or his legs will go numb.

So, his condition went from actually not too bad with a vicodin or two, to over the years it has worsened so considerably that sitting upright in a chair for more than 15 or 20 minutes has to be darnwell worth the reason, for the added pain he suffers afterwards, not to mention walking which started out not too bad in the beginning for short distances, but now his balance sucks, he uses a cane and just going through the house the short distance to the bathroom is a scary undertaking. On rare occasion when we do go somewhere that might require some distance, he has a scooter. Shorter distances he just leans his other hands on one of us. Of course, his knees will give out at random, so there's that.

He has bowel issues, and we did finally figure out with a double dose of Generlac solution and he can actually poop though it is not as frequent as we would like. Diverticulitis doesn't help that matter. He has spasms very frequently, all over his body, if he is touched while sleeping or just some good ol' full body spasms, which are a whole other ballgame. He was borderline on the sleep study, they didn't think the machine would help. He can't sleep for more than a couple of hours at a time. His pain is in the lower lumbars, sacrum and hips and then all the way to his feet, his nerves feel like ropes in his legs and he has lost really a lot of muscle in his legs, even though he writhes or twitches alot. He does try to do some exercises in bed.

Anytime he does leave the house, which is not often, the recovery period for that little activity takes a minimum of several hours to a good two days or so for him to recover. And I'm talking just going out to one small store or even just a ride in the van. Just taking a shower with help and he has to recover for a few hours from the activity and sitting up in his showerchair. His doctor's office is very good about not making him wait in the waiting room very long, they get him to a room pretty quickly so he can lay down.

Besides all of that, he has heart issues, and Type 2 diabetes that run in his family. And his immune system generally sucks. If the kids or I have a 24hr cold or flu, he gets it for a good two weeks. A neighbor kid comes in our house and coughs or sneezes, and Roy's got it for a week. His immune system has never been the same since the infection.

Yes, I know about the cigarettes. He has smoked for over 30 years. Got him to use the patches, and he came pretty close to quitting, but a longer program probably would've worked better. The cola? I know, he grew up on it. I haven't given up on those. But here's the dilemma...He has so few pleasures at all. I know it's stupid, but how can I 'make' him quit smoking and drinking the cola? We've been through the health discussions over and over....What he really needs is a sense of purpose, something to do to use his brain, but then tiredness and pain take over. A feeling of purpose, I believe would lift his spirits, and I think then he could follow through with more healthful choices. His entire life he has always served others in healthcare and now he thinks he can't. Ideas?

Maybe this is a better picture of what Roy skipped telling you about. It's my version anyway...he's not a very good typist-ha. Anyway, like he said, he is in a down-trend right now and I do get to the point where I know I don't have the answers so I follow him right down into the black hole because I can't fix it. Then we try to help each other climb back up.

I guess let me know if anything was unclear. Thanks.

Roy says that the patient he took the weight of across the gurney was a 350lb, paraplegic, double amputee who was in for flap surgery again (multiple surgeries). Roy had been caring for the guy for a month, packing his decubitus ulcer that ran from his sacrum to his hip with abdominal-sized wound dressings every day and making sure the guy was heavily medicated before any procedures were done. There was no way he was going to let this guy fall.

I wanted to add this so you would know that he has experience as a paramedic and a nurse.

[LuckyinKentucky]

I too suffer continuously from pain and meds don't really do much for it, and usually bring with em a bunch of nasty side effects. Possibly including but not limited the crappy feelings you've been having, I recommend taking a glance at the interactions printouts that come with your scripts and play the matching game with some of your troubles.



More importantly

Being in this situation I have found the best way to deal is to work on not dwelling on it. My pain gets pretty severe but is also intermittent (except like you, preceding weather fronts). On the days it is constant it can be quite hard to put in the back of your mind... especially considering that when it's present it can be all encompassing!

For me immediately dismissing the past pain and finding peace in the times it is not present is what it's all about.

[Snakeye]

Indeed there is a cold front coming thru and everyone with sci in it's path is getting the crap kicked out of em...Me and you included...Nothing you can do about the weather and as for feeling lonely. Most of us know how ya feel...My advice is to study and ponder on the advice the people on this board are giving ya. They "been there, done that" and know what they are talking about...Each means well. Some of it is hard to swallow but honest and well meaning...Beware of self-pity, and I'm sure ya deserve some sympathy, but it will eat ya and those around you alive...If ya can't physically get busy take up some light hobbies, read a book, watch old movies, anything to distract ya from your misery..Squise a rubber ball or use a hand squiggy on a constant basis...Practice the "art of ignoring" the pain and misery with all your might...We all have flare-ups but just get determained and point yourself in the right direction..You'll get past this misery and tommorrow or the next will be a brighter day...G-d Bless..

[tyvin]

mcwriter, on 26 September 2010 - 08:03 PM, said:

--------------(as dictated by roykelly2 typed by mcwriter, the wife):

"Okay you bastards...just kidding, I thank you for your kind words of encouragement and community spirit in beating a man to pieces while he's down, but hey? Whatever works, huh?

I've spent my life helping others who couldn't help themselves with no complaints because it was always better to give than to receive, but I find now, being on the receiving end that it is true, it is always better to give than to receive.

I'll get by and get over this as I have for the last 16 years, I'll pick myself up and shake it off and I'll keep going. It's what I do. I've got a great wife and family who are there for me whenever I need them and I've got a great group of acquaintenances that I can chat with if I get to feeling down, I see.

Thanks again, bye.

P.S. I would've typed this myself, but due to the arthritis flare up in my left shoulder today, I was unable to pick up my laptop. My wife happened to be sitting here next to me on her laptop and she is a much better typist and she loves me."

--------------as dictated by Roy----------------

[roykelly2]

LuckyinKentucky, on 26 September 2010 - 09:30 PM, said:

I too suffer continuously from pain and meds don't really do much for it, and usually bring with em a bunch of nasty side effects. Possibly including but not limited the crappy feelings you've been having, I recommend taking a glance at the interactions printouts that come with your scripts and play the matching game with some of your troubles.



More importantly

Being in this situation I have found the best way to deal is to work on not dwelling on it. My pain gets pretty severe but is also intermittent (except like you, preceding weather fronts). On the days it is constant it can be quite hard to put in the back of your mind... especially considering that when it's present it can be all encompassing!

For me immediately dismissing the past pain and finding peace in the times it is not present is what it's all about.

You really seem to understand the situation and sometimes thats enough. Just to know someone gets it now and then is sufficient. thanks. Roy

[roykelly2]

Snakeye, on 26 September 2010 - 10:05 PM, said:

Indeed there is a cold front coming thru and everyone with sci in it's path is getting the crap kicked out of em...Me and you included...Nothing you can do about the weather and as for feeling lonely. Most of us know how ya feel...My advice is to study and ponder on the advice the people on this board are giving ya. They "been there, done that" and know what they are talking about...Each means well. Some of it is hard to swallow but honest and well meaning...Beware of self-pity, and I'm sure ya deserve some sympathy, but it will eat ya and those around you alive...If ya can't physically get busy take up some light hobbies, read a book, watch old movies, anything to distract ya from your misery..Squise a rubber ball or use a hand squiggy on a constant basis...Practice the "art of ignoring" the pain and misery with all your might...We all have flare-ups but just get determained and point yourself in the right direction..You'll get past this misery and tommorrow or the next will be a brighter day...G-d Bless..

Thanks I will continue to do what I can and I'm sure things will get tolerable again eventually. I really appreciate the in put. Roy and God Bless you too.

Edited by roykelly2, 26 September 2010 - 11:07 PM.

[roykelly2]

LuckyinKentucky, on 26 September 2010 - 09:30 PM, said:

I too suffer continuously from pain and meds don't really do much for it, and usually bring with em a bunch of nasty side effects. Possibly including but not limited the crappy feelings you've been having, I recommend taking a glance at the interactions printouts that come with your scripts and play the matching game with some of your troubles.



More importantly

Being in this situation I have found the best way to deal is to work on not dwelling on it. My pain gets pretty severe but is also intermittent (except like you, preceding weather fronts). On the days it is constant it can be quite hard to put in the back of your mind... especially considering that when it's present it can be all encompassing!

For me immediately dismissing the past pain and finding peace in the times it is not present is what it's all about.

Thats what I look forward to, just 1 day with no pain. When and if it happens will be great. Thanks for the info and I will check into some of those side effects and interactions again and see exactly which one is doing what. Atleast it will be something to do thats different from the daily routine. Thanks Roy

[mellowgator]

hi roykelly,

i'm sorry you are so pain riddened that it's keeping you hole up in you bedroom. i have a lot of pain and usually it's worse in the am when i first get up. i make myself get up and i take my meds and usually i get some relief around midday. i find that when i'm feeling bad that staying in bed doesn't help so i get up and sit on the back porch. i try to get on the computer or call friends just to get my mind off it. it's easy subcumb to the pain. i do admit i take oxycoton 30 mg 4x and neurotin 600 mg 4x and mobic 15 mg daily. i still hurt like crazy but the meds do help.

in your case i'm surprised you don't have a moraphine pump or fentonol patch. something to let you get and get going. i hope you have explored your options. it's sad to see your life pass you by.

hope you feel better.

mellowgator

[roykelly2]

mellowgator, on 26 September 2010 - 11:14 PM, said:

hi roykelly,

i'm sorry you are so pain riddened that it's keeping you hole up in you bedroom. i have a lot of pain and usually it's worse in the am when i first get up. i make myself get up and i take my meds and usually i get some relief around midday. i find that when i'm feeling bad that staying in bed doesn't help so i get up and sit on the back porch. i try to get on the computer or call friends just to get my mind off it. it's easy subcumb to the pain. i do admit i take oxycoton 30 mg 4x and neurotin 600 mg 4x and mobic 15 mg daily. i still hurt like crazy but the meds do help.

in your case i'm surprised you don't have a moraphine pump or fentonol patch. something to let you get and get going. i hope you have explored your options. it's sad to see your life pass you by.

hope you feel better.

mellowgator

I want to thank you for your reply most of all because it hits me right where I am at currently. I really don't like telling people what meds I take because it usually gets into a contest which make me feel worse because it's really different for each one of us. Medications work differently on differnt people and nobody should feel like what there suffering is less just because they aren't taking more or this drug or that. I am currently taking 2 80mg oxycodone each morning and 1 80mg oxycodone at night. I also wear 2 100mcg duragesic (fentanyl) patches that I change every 3 days. It took me about 10 years before we reached this combo of drugs which seems to keep things tolerable. That is unless I try to do something, like walk, or sit in a chair for very long. I was going to try a morphine pump awhile back but I never really pushed it. I had been on ms contin for quite a few years and just didn't seem to get enough relief.I also have been to pain clinics and had trigger point injections and taken all kinds of meds for the nerve pains. I was thinking back over what the surgeon was telling after surgery about having to try and pack fat around the nerves and it make me think he must of done some damage to the myelin sheath of the nerves. Just another possible reason for the pain. Again thank you for your in put. My wife mcwriter says that you scuba dive and to me that sounds great. I really think I could do that, maybe. I think I will try and work to see if I can get my certification again. When I was younger living in California I completed everything but my open water dive or I would be certified now.I think I will give it a chance,thanks again Roy.

Edited by roykelly2, 26 September 2010 - 11:48 PM.

[mellowgator]

hi roy,

diving is a blast. the last dive trip i took was in the cayman islands. it was beautiful. i find that you can see a lot by simply snorkeling. i hyperventale and then i can free dive for a couple of minutes as well. i really enjoyed swimming with the rays in grand cayman it was great fun. i can snorkel for hours. swimming is second nature to me so freeing. it helps to keep me strong and it releases endorphins. if you have access to a pool i highly recommend that you try to swim daily.

my favorite dive spot is looe key. it's a beautiful reef. the keys have great reefs and several of the aren't very deep so you can get by with snorkelig if you want to take a break from diving. as you know you have to watch how long and how deep you dive and be sure to do you check stops. it's potentially dangerous but oh so fun.

i think you and mcwriter should get certified. it is the best.

you really should look into getting the morphine pump. my grandfather had one. he was able to control his back pain with his pump and a couple of shots of wild turkey. i would sneak him a bottle to the nursing home. that combo worked for him.

mellowgator

[Tetracyclone]

Keep thinking. There is lots he can do simply for the health of his family. The first thing is to model good service to them (you all) by taking the best care of himself that he can figure how to do.

Edited by Tetracyclone, 27 September 2010 - 01:41 AM.

[Wheelsonfire]

mcwriter, on 26 September 2010 - 08:03 PM, said:

--------------(as dictated by roykelly2 typed by mcwriter, the wife):

"Okay you bastards...just kidding, I thank you for your kind words of encouragement and community spirit in beating a man to pieces while he's down, but hey? Whatever works, huh?

I've spent my life helping others who couldn't help themselves with no complaints because it was always better to give than to receive, but I find now, being on the receiving end that it is true, it is always better to give than to receive.

I'll get by and get over this as I have for the last 16 years, I'll pick myself up and shake it off and I'll keep going. It's what I do. I've got a great wife and family who are there for me whenever I need them and I've got a great group of acquaintenances that I can chat with if I get to feeling down, I see.

Thanks again, bye.

P.S. I would've typed this myself, but due to the arthritis flare up in my left shoulder today, I was unable to pick up my laptop. My wife happened to be sitting here next to me on her laptop and she is a much better typist and she loves me."

--------------as dictated by Roy----------------

Apologies for the delay in posting, my tears have just subsided and I spoke to four guidance counsellors but none have shown me the errors of my ways…..

Seemingly I am unable to swallow drivel…….

Your lack of ability is due to weakness of mind, you wrap yourself with the victim mentality and manipulate those around you into becoming enablers.

You wallow in misery, I can tell you of pain to which you will be unable to comprehend and I can now advise without detail that I have taken no pain relief, nor will I. I use this pain/discomfort to better myself.

GB, remember I spoke of the "feckin weak minded"?

This is a classical case of such.

Say what you will Roy, you shall not pull the wool over my eyes.

Irrelevant as to prior occupation, reason not for excuse.

First, throw your rattle to one side, pick up a mirror and do but one thing, look at the reflection, if you see a man, then get out of bed and be the man you want to be.

If the reflection is that of the victim you portray, then ask all around you to leave before you become one of repulsion(that's a noun by the way, Ed)……

In saying that, Tyvin summed it up better than I.

(typed by WOF)

Edited by Wheelsonfire, 27 September 2010 - 02:49 AM.

[ClaraTaylor]

Pain is all consuming, no one here is going to dismiss that. But the less you do the more everything hurts when you do try (body deconditioning). Yes it's going to be hell, yes you're going to be in so much pain that you will be sweating, swearing, and ready to pass out but start setting yourself small goals each week. doesn't matter how small they are (to start) so long as they are ALL LOOKING FORWARD. Whether your goal is physio exercises, or to be at the sink long enough to do the washing up (i.e. one of my goals was to do my own shoe laces up... and I spent most of the day practicing tying knots until both hands were working together), or to write letters to all of your family telling them how wonderful they are and how much you love them and how much you can't wait to spend the day together ... You can't spend the rest of your life in bed and misery.

Look at all of the tourist spots you have around you and pick one place to be your big goal. To go and spend a couple of hours being "normal" with your family. Don't sit here and think "but that'll really hurt" - we all know that! But the big girly pants need pulling up and you need to decide if you're a strong enough person to go for it anyway. All of your little goals are to build up to that one day, whether you start with exercising your ankles or spending the day on the telephone organising that morphine pump, whatever.

You're a clever chap you know how this works.


Write a journal, somewhere that you can scream in privacy and moan without having to keep it censored so that your wife wont get too upset about it all.

[rue2you]

I really do feel bad for all you go through. But, we can't live and function on sympathy. I had about a week where I decided everything I tried was just too hard - it wasn't worth all the effort and energy to put in it. I went to my room and stayed on the computer. Hubby and kids would come in and "visit". After that week, my hubby asked me what was going on. I told him my new philosophy. He told me (in a kind way) that he was not going to let me do that. He said that he would rather me spend a day trying to sweep that floor and failing then to spend a day not trying. He said that he and the kids would handle everything I could not do - but they could not handle me giving up and not trying to do anything. It made me very angry at him. I cried and told him he did not understand. He said that I was right...he did not understand paralysis and the pain and frustrations but he understood human nature and that when you give up, life is over - even if you keep breathing. I asked him to leave the room. He did and told me that he loved me. Within 30 minutes of arguing and whining to myself about my dear husband and crazy he was, I knew deep inside that he was right. I swallowed my own feelings and got up. I shower every morning (it helps me get moving in the mornings), and get dressed - all the way to my shoes! I tried to accomplish one thing each day. Many times I accomplish MANY things! Other days, I can only manage the one thing. But things have gotten easier. My spirits are wonderful because I am living unselfishly and that makes all of us happy. My hubby is very loving and patient and there are many times that he tells me to stop and go rest.

All I am saying, is that you sound much more limited than me - but there is still something you can do. Find it and do it!!

McWriter - help him!! Sometimes the spouse must use tough love. It is best for us. I am thankful that my hubby was firm but loving. He jolted me to reality before it became too late.

[Tetracyclone]

Clara is the most credible voice here and know as much about pain as anyone. We should have an engraver put her words in the Spinal Cord Injury section.

Roy, your last post sounds great. Hang on to that positive energy and every time discouraging pain hits, think, "Pushing through this will help me get better. Yup, I'm getting better!

Edited by Tetracyclone, 27 September 2010 - 01:54 PM.

[Wheelsonfire]

Tetracyclone, on 27 September 2010 - 01:49 PM, said:

Clara is the most credible voice here and know as much about pain as anyone. We should have an engraver put her words in the Spinal Cord Injury section.

Amen to that

[ClaraTaylor]

How are you doing today RoyKelly?

[Snakeye]

I look back and hope we haven't done Roy a dis-service by being a bit harsh concerning the pitfalls of self-pity...it's such a fine line..To preach tough-love yet show we care...When one is vulnerable their feelings can be hurt horribly..But there has to come a time when we are jolted into realizing were hurting ourselves and those around us by seeking sympathy and not getting off our duffs and trying harder...it's for the best but when it happened to me it wasn't a pleasent awakening....Just hoping he knows we meant well..