Are you guys on the level?

[dejerine]

Okay, I finally realized why I kept feeling disoriented. I read a study about internet writing which says it is more formal and stiff than natural speech, more stilted even than letter writing. Maybe that is it. You guys are so normal. I don't mean the people who are obviously struggling, I am wondering about those who seem to be able to compartmentalize their CP and put it aside, for whom it is closer to problem than catastrophe. Have you lost nothing or do you have nothing left to lose. You are so calm, so steady, and so determined to look beyond it. Where do you get the repose, the dignity, and the reserve?

I am trying to process this in light of my own abnormality. What is puzzling me is this. When I was at Rancho, which seemed like a compassionate well run zoo, the SCI people seemed to fall into two groups. One was the good guys. They tended to go off and become tricycle athletes and marry born again girls (no letters please, I am all for that admirable group) who didn't mind the fact that sex wasn't happening, and they all got college degrees in engineering or computers and were very inspirational and often wrote books. The other group of SCI patients, the majority, the bad boys, fell completely apart, and found other ways to mess up their already really messed up lives from the injury even further, ways like drug addiction, alcoholism, hanging out with whores, etc. Then there were the people with CP. They generally killed themselves or went hysterically nuts. This all made me feel like I was coping. I didn't kill myself and I didn't hang out with whores. Yet, I was dodging the killing blow of pain all day and all night. The exhaustion always makes me take caution. Yet, some here are very invigorated and self possessed. How is this possible?

I was stranger than heck, couldn't remember my own personality, had terrible attitudes, etc. Like many, I had already been dished out the punishment by nature, so I pretty much figured no matter how I lived I was just living in accordance with what had been handed to me, I suppose. But by comparison to the others at Rancho, I thought I must be dealing. I accepted lunacy, sleeplessness, depression, and fearfulness as being the good part of CP, suicide being the bad part.

Then, I came to this site. No one swore. No one confessed to having much of a problem. You choose avatars and handles that are powerful, intimidating even. Neurontin seems to work great for most of you. Opiates do what we always hope opiates will do. Some of you are not even drowsy on 4mg of Klonopin, which knocks the heck out of me. Over at the relationship and sex forum, some of you even claim you never had it so good. Is it just me or what? Are you guys supermen? Are you some amazingly hardy subset of the human race, or were the guys at Rancho some degenerate subset that should be ashamed of themselves for falling apart. The more I read posts, the more I am convinced I am so dysfunctional that I have gotten the sign posts all mixed up. Are you guys not suffering like mad, or what?

[RehabRhino]

Delve deeper into the forums Dejerine........I see people on here discussing every problem you mention. Some barely have the will to go on, others find it here. There are strong people here who champion getting on with life but I don't think anyone is superhuman......we all got problems

[dejerine]

Rhino,

I was thinking more of the INcapacity of overcoming the intolerable and the RELENTING human spirit. How is it that we have any powerful people here?

[stlyin moe]

I really don't know if there's a right answer to your questions, but I remember there was a ferry accident (I think it was in the English Channel) in the early nineties I think it was, where there was a great loss of life. A study was commissioned to find out why so many perished. Many seemed to have been trapped inside the vessel. After interviewing the few survivors that made it out they discovered that literally hundreds of people froze in terror and were unable to move themselves to safety. Mind you, the boat was listing on it's side for a while. There was plenty of time for those people to get out yet they didn't.

This investigation led to further study on the hypothesis that some people are simply genetically weaker and are unable to function in a time of crisis. One could say that CP is a state of constant crisis and those that fall apart just are part of this lot and not genetically capable of dealing.

It may also be that their pain is simply greater to the extent that no human could endure it. It's really difficult to say.

I'm the type of person that doesn't like to take aspirin so I'm always looking for another direction to go in that'll move me away from pills and pain meds. I was lucky to have discovered that digestive enzymes dramatically reduced my CP. Had I been on opiates I'm certain I would never have made the connection that led me to this discovery and I'd have spent the rest of my life stoned.

I don't claim to be one of the genetically superior so please don't think I'm thumping my chest proclaiming I am. I considered suicide at one point the pain was so intense and persistent. CP will bring the strongest mind to submission eventually. It's just a matter of time...

Got to run for now...my son is insisting I do something with him...

[Myc0]

You are not alone. This whole planet is crazy, it's just a matter of degree. Some people here have some of their shit together and are proud and vocal about it, some of us hide our shame and insecurities or mask them with bravado. I just try to take it one day at a time, otherwise I'd be overwhelmed and go runnin' for the razors. Thank God I don't have CP, I can barely deal with things as it is. I also frequently hate life as a para, and doubt I could even find the will to carry on if I was quad. I totally respect those who are strong enough to deal with such things, but I just don't think I have that kind of strength in me. I'm amazed by those who can face such problems and still enjoy life, stay positive and carry on. I don't know what I'm trying to say here, I'm probably just babbling and not answering your questions at all, this is just the response that came to my mind when I read your post. I love this site because I find solutions that people have come up with for dealing with the same problems I have, and take strength from the people who are successfully coping with a burden MUCH greater that I have. It helps me put my own situation in perspective. I haven't even hit the one year anniversery of my SCI yet so my mind-set hasn't even fully been able to register the harsh reality yet. I still subconsciously think of myself as AB, when I dream I'm AB, so I'm still adjusting mentally, and the whole process has been painful and dificult. All through rehab I kept suicide in the back of my mind as my back-up plan, and at one point thought it was a plan I would very likely put into action before too long. There are still occasions where I feel pushed beyond the edge of what I am willing to endure. Well I don't know if any of this will mean anything to you, I just frequently feel the need to vent and sometimes it can be reassuring to know that you are not alone with your struggles. And I just thought I would add that I have always believed that there is no such thing as normal, only average; and who wants to be that?

[dejerine]

"De omnibus dubitandum" I can't go along with that quote. Just kidding.

MycO (way cool avatar), thanks for the post and your world view. I feel better.

Sometimes in high school, my buddy who sat in back with the rest of us troublemakers would say, "I know the answer. I just didn't hear the question." That is me on this topic. I agree with what you are saying, I just don't know if my Latin is very good. Thanks for the reply, since questioning everything is what I am doing; the trouble is that when I do, people do it back to me. Then I do it back to them, and so it goes, until finally my neck gets too bad to type, so they win. I think by rights I really ought to win since my posts at least include some humor and my detractors are deadly serious. Humor at a pain site should count for something. My record is 0-4, however. Holy dubiousness! I have persuaded no one of anything. I could be divorced from this group, and get more agreement. I expected people to say "Man, I am losing it too. Hang in there.", but it seems people don't like to hang out their dirty laundry.

I have never had a bad response here from a positive post on anything, but if I put the words "very bad" within five words of the words, "Central Pain" I am sure to have someone take me apart. There is some opposite reaction to anything which says CP sucks. The post is "not brave" "negative" "beating a dead horse", "uninspirational" or socially unacceptable, to say bad stuff. This only proves that some here are following the admonition in your quote as far as it can be carried.

I just didn't realize the pain forum was meant to be devoted to light reading that gives you a fuzzy warm feeling when you finish. We could just close the forum with all these bothersome complaints and go to: http://www.catherinesnodgrass.com/Inspiration.htm

Okay, just for you dubitandums,
"Severe pain isn't so bad, an oxymoron really. At least it isn't boring. I still have an important fulfilling job, lots of money, a social life to kill for (What's that Paris baby?) and I am doing my part to help the American economy by piling up the cash at the pharmacy. What could possibly be better?"

A NOTE TO THE BEAUTIFUL THOUGHT SOLVES EVERYTHING CROWD:

Well, sorry about this, but CP sucks and it sucks way worse than anything I have ever encountered, including all varieties of ordinary pain (which includes an awake surgery) and including loss of motor function. If that doesn't qualify it for some badmouthing and my gradual destruction does not merit a bigtime lament, then people can just suffer. I hate CP. I hate what it has done to me, my family, and my personality. I hate spending a fortune to try to get rid of it, including major surgeries, and I hate being told by the doctor that I am weak about it. (I don't go to jerks like that any more). I hate that the NIH budget for pain research is puny. Those of you who are cool with this can go on proving how brave you are for as long as you want. I would like some pain relief.

I am glad some can find something positive to say, but so far I can't think of a single thing. Sorry to be uncasual, even nasty about it, but a high cervical lesion, leading to Central Pain from face to feet is just not my idea of living. So if you rip on me for sounding off, you are speaking ill of the dead.

Someone will one up me on this. Be sure to include your curriculum vitae. You can apply to work as a consultant to the first three docs I had, who lectured me so stringently about how my problem was that I just wasn't brave. This knowledge only cost me sixty thousand dollars and a year in a very uncomfortable cast to obtain, so you are so kind to give it to me again for free. If you have any positive remarks about the Third Reich, Idi Amin, whale hunting or malaria, I would be glad to hear them also. I have to log off now so I can get back to reading "The Wit and Wisdom of the Spanish Inquisition". I got it in the Borders special this month where they throw in free the companion volume, "Torquemada, the Man and his Music."

__________________________

"ILLEGITIMI NON CARBORUNDUM"

[bob clark]

Hi dejerine,

I find it difficult to reply to your post. There is nothing positive to write about severe chronic pain and you don't need anyone like me listing adjectives to describe it or stringing verbs together to decry it. You know them only too well. And you don't need or want anyone expressing their sympathy to you because that and 5 bux still only buys a Caffè Verona Decaf down at the local Starbucks. And as you implied there's not much hope or pain relief in mere words despite what the BEAUTIFUL THOUGHT CROWD claims. If you wrote as a way to vent your frustration and anger I hope in some small way that it's helped you. Every second of life must be a bitch when you're in a world of incessant and intolerable pain.

I asked before if you ever looked into having the type of pain relief surgery that Larry Flynt had done on his spine and you never answered me. Before the operation he claimed he was boiling in hot oil and afterwards said his pain was at least tolerable. Just what surgery he had performed I don't know but it was described as "radical" so assumed that to mean having his spinal cord surgically or cryogenically cut. If you want I can try to find out?

SCI has sucked most of the joy outta my life. Pre-SCI I would spend a lot of my time working and most of my spare time looking for fun and exciting things to do. Post-SCI I spend ALL my time trying to remain independent and getting and staying outta pain. What a waste.

"Don't let the bastards grind you down." -- Easier said than done.

[chick]

You are so calm, so steady, and so determined to look beyond it. Where do you get the repose, the dignity, and the reserve?

.....Then, I came to this site. No one swore. No one confessed to having much of a problem. You choose avatars and handles that are powerful, intimidating even. Neurontin seems to work great for most of you. Opiates do what we always hope opiates will do. Some of you are not even drowsy on 4mg of Klonopin, which knocks the heck out of me. Over at the relationship and sex forum, some of you even claim you never had it so good. Is it just me or what? Are you guys supermen? Are you some amazingly hardy subset of the human race, or were the guys at Rancho some degenerate subset that should be ashamed of themselves for falling apart. The more I read posts, the more I am convinced I am so dysfunctional that I have gotten the sign posts all mixed up. Are you guys not suffering like mad, or what? Delusion is man's opiate from the chaos of reality.
Denial is avoidance of pain and the mere delay of experience.

[Wesley]

Rhino,

I was thinking more of the INcapacity of overcoming the intolerable and the RELENTING human spirit. How is it that we have any powerful people here?

Powerful? Powerful is your clear and elequent writing. Believe me, you're expressing what many feel and are not able put in words. Thank you for your efforts. They are not unappreciated.

For me, if I want brotherly sci candor, the Care forum is the place I go. Nobody's putting a happy spin on life there.

CP sounds absolutely fucking horrible. Far beyond the already horrible world of paralysis.

[Jadis]

It took me four years to get to where I can "deal" with my pain. I am not able ot separate from it all the time. Matter of fact, Sunday, I was either medicated or bawling because I was in so much pain. Booger couldn't even hold me -- which he likes to do -- because it hurt entirely too bad. He loves it when my pain levels are tolerable and he can actually hold me at night. He knows that his touch is still painful, but I just deal with it because touch is so important to both of us.

Sex is not the same as it used to be - my positions have been cut down to just two. But, I also know that there may be a time when I will have only one. No point in dwelling on what I lost, enjoy what I have, what I gain, and move on. I should probably point out that I am in a degenerative state, and not your typical traumatic SCI.

I find being negative and pissy eats away at me, so I try to not go there if I can avoid it.

Oh, and for the record, 4 mg of Zanaflex will knock me out for approx 3 hours. :D I can take 2mg at work, as long as I'm not driving, but even that makes the walls breathe.

I hope that offers some clarity, if not, I will try to be clearer later. I have to go do blood clinical now. Honestly, I'd rather cuddle up under my blankies and enjoy my heating pad. :(

[dejerine]

Jadis,

Thanks for talking about the touch thing. I can relate to it. If my daughter sits on my lap, I feel a bond, but in truth she is causing me agony. IF you condition is degenerative, I sincerely hope the degeneration is slowed. You sound like a loving wife, and you deserve a lot of credit for holding onto that emotion in tough circumstances.

As long as I am telling how off I am, I will say it is strange to me that some of the comments here refer to my post as "venting". These are well meaning responses, full of support, so it informs me I am not communicating well. To me, venting is what you do when you have just had it and cannot refrain from sort of thoughtlessly blurting it out. I do not regard any of what I say as venting. I view it more as chronicling. IF you go into a burn ward and ask someone how they feel and they say it really hurts, they are not venting, they are describing. If you walk in on a torture session and ask the subject how it is going their answer will not be venting, it will be more like shrieking. If the lab rats given CP chew off their limbs, they are not venting either.

The posts that throw me go something like this:

POST: Hello, this is my first post here at CareCure. I am a 14 year old girl from a small town in the South. My mother is divorced and is an alcoholic. She doesn't understand why I keep complaining so I can't talk to her about it. My doctor here has never heard of CP and tells me to take Aleve. I am C4 incomplete, but actually mostly complete, and we can't afford help. About six months after the injury I started getting this burning which is unendurable. When I traveled to the major university pain clinic across state, they said I had Central Pain and gave me some Neurontin and Topomax, but it didn't help. My mother's friend drove me in his van back over and they tried a lot of other medicines, none of which had any effect. I can't live much longer like this. My mother is no help. I am glad I found this site so would you please tell me how to be rid of this burning. P.S. I also have electric pains that jolt me and hurt really bad.

ANSWER: The important thing is not to be discouraged. Sometimes you have to try a lot of things until you find something that WORKS. I used to suffer terribly until I tried Tylenol #3 and now I make a living as a pipefitter and welder of steel scaffolding in skyscraper construction. I also am CEO of a company I started that markets eyeliner to India. If you go to my BIG CITY a long ways away from you up here in Massachusets, and see someone there, they will cure you. Their nurses are really nice. Get out and exercise. Also, if ketamine and fentanyl don't touch your pain, then probably there is some herbal remedy or some food you can eat that will put an end to this needless suffering. A chiropractor will work if nothing else does. Love Peace and God bless.

You see, none of this makes ANY sense to me. A helpless desperate person in pain with no support group, No one has the guts to keep her from wasting more of the money she doesn't have. You aren't going to do better for her than the big medical center pain clinics. Why do you mislead her? Why not just say CP is terribly difficult and suggest ways her church or a social worker might go to bat for her. Maybe she needs to MOVE to the big city. Tell her to quit trying to be ambitious and save her energy so she can survive and live. Sorry, that is the way I see it.

Although apparently it comes off as venting, for me it i more like the article Alan wrote over at painonline.com where he does a Central Pain update. He documents rather than dramatizes. The result will chill you to the bones, whether you have CP or not. To me, it is the best written piece on what it is like to live with chronic pain I have ever read.

My pieces are not so black and white. I comment on the emotional impact, but I don't consider it venting, because it is in fact what Central Pain is like and I view my feelings about it as being as legitimate as the next person. I do not think anyone who is burning like this could feel any differently. For example, during my third major spine surgery, they somehow managed to give me lots of curare to keep me from speaking but they failed to give enough halothane to keep me asleep. I therefore could feel them insert the spreaders in my neck incision and go to work. This was an experience so awful that it defies relating. I had nightmares for two years and still get shocky when I go into a hospital. Nevertheless, the impact of that is virtually nothing compared to the nonstop, determined to kill me, dysesthetic burning, which occupies my body.

The one event was an experience "I" endured. Central Pain blots "me" out. How would I know who I was when I am on fire. If I put it down in words, is that venting? or is it simply chronicling what is going on. I AM in fact amazed at the cool, dispassionate stories here of Central Pain. I hope my doctor never reads them because he will not realize I am really, really in trouble with this thing. More than I find I can deal with.

When I am emotional about it, I do not vent, I become quiet, not trusting myself to have any feeling, because logically if my actions went on feeling, and without faith, I would have ended my life, I suspect. There is a time to feel and a time not to feel. STOP, SHUT DOWN, DON'T LET THE FEELINGS HAPPEN, IT WILL BE BETTER LATER, YOU WILL FIND A WAY IN THE MORNING TO THINK ABOUT SOMETHING ELSE. Dr. Young's advice on conserving resources and minimizing stress is the ONLY way to survive, I think. That is also the NIH recommendated way to treat CP.

[alan]

I wish I could put mine aside - I would have been able to have a life. I feel like such an incompetent when I read of the lives other quads on this site are able to lead.

[metronycguy]

yes thats the thing people dont get, pain is overpowering there is no ignoring it. you cannot have a livable life with it. it has to be at least lessened to a level that is tolerable or better yet eradicated. the fortunate people that are able to think good thoughts or listen to soft music to banish their pain are dealing with nagging but low levels of pain.

[Jadis]

I wish I could put mine aside - I would have been able to have a life. I feel like such an incompetent when I read of the lives other quads on this site are able to lead.
I'm not one to tell you how to feel, but I'm going to try to do this without coming across as one that says "get over it" or "cheer up" to someone with chronic depression.

Pain is not something that can be put in a little box. Your level of pain and how it affects you does not make you incompetent when compared to another quad on the board who may have less pain or none at all.

I don't get away from mine. Every breath delivers a shock to my body that feels like I am being electrocuted - add to that "boiling oil" and fire that comes up from my toes. When it's not completely screaming at me, I can do some things and manage to not completely be consumed. Reading a book doesn't work, as I can't concentrate on what I am reading. I do listen to soothing music. (but not through headphones, it brings the sound too close.) If the pain is bad enough, I can't watch tv to distract me because my vision blurs to the point that I can't see the tv screen.

There are days that I feel that I am being sucked underwater and fighting for my life. Being a girl, and an emotional one at that, I just sit and cry and beg my husband to make it stop. My doctor doesn't seem to get it and is completely unwilling to help me try something stronger to give me some relief. I know it won't go away, but I would like to take it down at least a notch. There are days since having my chair that I can go all day without taking anything for pain. I do pay for it later though. But, the weather has to be good, the stars have to align just right, and I have to not tax my body too much.

Alan, some can have blinding headaches and not take anything for it, others with the same headache are unable to get out of bed. Pain thresholds are a tricky beast and that's why I think it's so hard to get doctors to listen.

[LaoziSailor]

Mike,...
the fortunate people that are able to think good thoughts or listen to soft music to banish their pain are dealing with nagging but low levels of pain....we have discussed this issue before.
Please don't define the levels of pain other people suffer when you are not in their bodies, you just don't know!

[dejerine]

Mike,

Its interesting your comment about music. Thanks for mentioning it. When I first had access to an actual pain doctor, very famous, and I already knew opiates didn't help me, we talked about distracting sensations, and he began to discuss the anatomy of it and for the first time it began to make sense. My lesion includes my face and I asked him "what am I supposed to do for distraction if it goes right up to the top of my head and also, according to him, came from the dura, which is around the brain". What sensatsion does that leave for distraction so I can feel like a human being? He told me about a patient with a very high lesion, where he had to tell them "Blink, if you can smell this". Then, he said he was kidding. I had gone on this sort of troglodytic exploration of my body to try to find SOME place that felt normal, anywhere and was in the mind that NOWHERE in my body was normal now so who the heck was I?.

He said something interesting, he said pain from the face drops down into the cord and then comes back up and travels in the fifth cranial nerve, so I still had four nerves ABOVE that to try to focus on. Apparently, ABOVE the Trigeminal nerve is the nerve of smell, and one that you SEE with, and one that moves some eye muscles. He said you've got to amplifly what is ABOVE your lesion. He said pain lesions from cord injury go higher usually than even motor lesions. Since our discussion, I have learned and studied more, and he was right.

Now, to qualify it a little, somehow my eyes and hearing are also involved, because if my vision is interrupted, lilke someone here has already posted, my ability to pull back onto the view is disturbing and effortful, and sound or the approach of someone can make me a little spastic in my thought tracking for a moment, (Yeah, I know, this is all impossible, but this famous doctor said he had seen it before) but anyway, I began to try to watch videos to try to get my mind off the burning. It helped. I also, like the post here, for some reason don't like earphones because the sound does feel close and of course the earphone touch burns the front of my ears, so I got some speakers and turned on a few CD's. Soothing music wasn't the distraction, so I listened to "Money for Nothing", and violent stuff like that. Now, I can be held by softer music, like the Eagles, "Hell Freezes Over". Their "Seven Bridges Road" on their DVD soundtrack always makes me want to drive through the Shenandoah valley. Ledward's piece with Alison Kraus, "Dance by the Light of the Moon", and other softer music works now, so I have trained my brain to focus on music. My doc said this was like the legendary blind person who can smell better, so I went back to the smell thing. When the burning is out of sight, occasionally the smell of "breathless" perfume from Victoria's Secret" is strong enough to break the desperation.

This is all really weird, right? I know it. Nobody knows how impossibly weird this existence is than me. I am just saying, it is doing SOMETHING, and I have tried to make a life out of my top four cranial nerves. Sort of pathetic, but I would be much poorer without the music which is my resort when the banks of burners in my legs and feet really turn on, at which time, nothing should work, but somehow music can sometimes get me out of the blinding pain and fear. You work with what you got.

I am grateful for music. I have no idea why my eyes and hearing would be affected by central pain unless the thalamus is somehow weirded up generally by the whole mess and doesn't like to reprioritize AT ALL. I am not alone. If I read enough I can find myself in the posts here. I never thought I would hear someone say the music sounds "too close" but there it was, in one of the posts at this thread.

Thanks to everyone who posted. And I can't wait till the managed care billing clerks start getting billed for speakers for those with CP. No doubt they will go along with it eagerly and provide us with Bose high grade ones, since they know everything. Bose was from India, so maybe my Hindi billing clerk, who comes on the line will go for that.

Fortunately my computer came with speakers, so nothing can stop me now. Alan, you are the least incompetent person here. Another way to get out the ghastly sensations is to remind myself my scapulae could be hurting like yours. Sorry

P.S. I am just kidding about the hospital billing clerk being Hindi. The hospital chain only uses East Indians and Pakistani's for stuff like heart transplants and corneal surgery. For really important stuff, like billing, they use English major PHD's to make sure we understand how important it is that we quickly process our bill, that we are "responsible" and they only are willing to bill our insurance as a "service" to us. For equal opportunity employment, they put the Hindi's and "still learning to read and speak English" people on the customer service help line where you protest your bill. It is just as well since they aren't going to bend anyway and the futility of it becomes clear so much faster that way. It is for sure they aren't math majors at billing since their total is always higher than what I actually received. Example, last visit, they didn't give me any take home meds because of course nothing works. On my bill, there was this item for Tylenol #3, a common take home med. Problem was I hadn't gotten any, and they charged me "SIX HUNDRED DOLLARS" for the bottle. I am not making this up. I protested twice and even went over to hear their standard lecture about how they can never make a mistake. Insurance paid it without a protest. I am glad hospital billing is the one area in life that never makes a mistake. Radiology never makes a mistake either. I had been waiting for over an hour for my turn, when this snippy little SS trained billing person at the desk with a black belt in billing said in a tone everyone could hear, "Your doctor didn't order this in writing, so we will have to wait until his nurse brings it down. These other people's doctors all have written orders, so tell yours to start doing it ( you despicable two year old) The others in the long line of waiting chairs fiendishly realized they had just eliminated someone in front of them and began their ghoulish smiling. With the CP, my behind was burning from sitting so long in contact with the chair, and another hour seemed unbearable, so I told her I had heard him phone it in. The fact I had actually questioned her was too much and she snapped and started yelling that I was a "criminal law breaker" and even had this one lady, who had moved into my place, yelling at me to "shut up and quit causing trouble". A big guy behind her also moved ahead and frowned menacingly at me. Then I did my hours more wait. It was like Adam Sandler on the plane when the security guy tells him uncalmly to "SIR, STAY CALM". I later found out it wasn't a law at all, just a requirement Medicare has for Medicare before they will pay, a written order. My doctor could have faxed it over a day later and it wouldn't have mattered. I wasn't even ON medicare, so a phone call was fine. I later pointed this out in writing in a letter to radiology. Listed below is the entire content of what I received in apology:

" "

We should just have the militants go against the billing clerks. the billing clerks always win.

[alan]

I wish I could find something that distracts me. Heck, I'm an avid fan of my local teams, and I really get into the games (including yelling at tthe TV and cussing bad plays.) Yet, even as absorbed as that, I'm still fidgeting while I'm hollering, in the continual effort to make my taut upper back feel looser. If laying down provided relief, I would seriously consider not even bothering to sit up, to avoid the constant rubbing and popping of the shoulder blades that occurs when I'm sitting and moving my arms even a little. Plus, there's the burning, tightness, et al in my abdomen (affects breating and eating) and everywhere else that I've been living with for almost a quarter century that keeps intensifying for no discernable reason (MRI doesn't change - the C-4 to C-6 hole is stable.)

I'd love to be able to do ADLs, exercise, have a social life, some kind of job, etc., but I don't see how without some kind of pain relief and some fix for the shoulder blades problems. Bah.

[Jadis]

Alan, with all the rubbing/popping/etc you have in your shoulders, has a decompression procedure ever been discussed? Or is this something that would even help?

[metronycguy]

Mike,...we have discussed this issue before.
Please don't define the levels of pain other people suffer when you are not in their bodies, you just don't know!

lol i know enough if i start torturing you that bon jovi is not going to help:p
i think what you havent encountered is truly torturous pain, i get daily feelings of a hack saw blade sawing off my toe, after about 10 minutes i need to medicate. this is what i consider low to medium level pain, the higher level pains i fortunately havent had for a awhile , they are pure torture though.

my back ground in athletics is long distance 10 to 50 mile outrigger canoe racing and long distance sea kayak racing. in winter i raced long distance 25 to 50 k nordic skiing for quite a few years, plus years of racing 10k and 5k running races and tri's and open water swimming racing. my other hobbies were mountain climbing. i was in the military at 17, did all my survival training,airborne, SF skills there..
.

[LaoziSailor]

Mike,
...snip...
i think what you havent encountered is truly torturous pain, i get daily feelings of a hack saw blade sawing off my toe, after about 10 minutes i need to medicate. this is what i consider low to medium level pain, the higher level pains i fortunately havent had for a awhile , they are pure torture though.
...snip...
...I have no doubt you feel tremendous pain.

What I take exception to, is YOU speaking for somebody else's pain and implying it in no way compares to yours.

Cheers!

[alan]

Jadis,

What kind of decompression do you mean?

[metronycguy]

Mike,
...I have no doubt you feel tremendous pain.

What I take exception to, is YOU speaking for somebody else's pain and implying it in no way compares to yours.

Cheers!

i agree the same thing here,
i take exception when someone says that they have high levels of pain and they can use jedi mind tricks and music to forget about it. its bullshit. its not high levels of pain.. thats the low level shit..

[Jadis]

Jadis,

What kind of decompression do you mean?

Well, popping or clicking in the shoulder can be tied to a rotator cuff tear or the shoulder coming in and out of socket. Another injury that results in popping is rotator cuff tendonitis (bursitis/impingement syndrome). Especially with SCI ppl using their arms more than legs, we end up with high stress injuries. You can have a shoulder arthroscopy done to see if you have a tear, or other injury. Usually they can fix it right then. It's a same day surgery procedure.

I just coded one out for same day surgery the day that you mentioned the popping, etc so that's why it stuck out in my mind. Patient presented with complaints of pain, popping, and cracking sensations in her shoulder that did not respond to conservative treatment. Doctor determined she had impingement and did a decompression. He didn't say as a result of bursitis/tendonitis/partial tear, so I could only code it out as:

Admitting: shoulder pain
Primary: shoulder impingement
Procedure: decompression

A decompression is enlarging the space between the acromion and the head of the humerus, and also debridement, or removing extra bone/tissue that me adding to the problem. In some cases the bursa is removed.

[alan]

Thanks. It doesn't seem to be my shoulder itself popping (arm bone coming out of socket) - it definitely seems to be the shoulder blades that are catching on something and then popping. The orthopedist wasn't impressed. I'll mention this to my regular doc.

[dejerine]

Alan,

I have a Navajo friend, who always refers to his shoulder as including his scapulae and upper arm. I asked him why. He said white people don't know how the body is put together, that the arm starts at the elbow. So I got out my anatomy text book and tried to decide exactly where the shoulder starts and the scapulae ends. I can't do it. That makes Jadis's post interesting. I have another friend who claims only the Jobst clinic in California, (LA?) can fix shoulders properly, that the pro football players go there. Who knows. Probably an orthopod knows the boundaries, but does he know the SECRET Navajo healing? You never know what pearls of wisdom you will pick up here. By the way, my friend uses peyote, just so you can put things in perspective. That doesn't make him wrong, however.

[Jadis]

Thanks. It doesn't seem to be my shoulder itself popping (arm bone coming out of socket) - it definitely seems to be the shoulder blades that are catching on something and then popping.

Maybe not coming out of socket, but look at how the muscles attach in the shoulder area and to the scapula as well as the muscles points of origin and insertion from the elbow and surrounding area (chest and back as well as the base of the skull). In the first accident I had, I too had the popping/grinding/catching feeling in my shoulder blade. The method of getting rid of the pain involved twisting my arm and my therapist putting his fingers under my shoulder blade and pulling. Realistically, I'm sure he wasn't literally doing this, but that's sure what it felt like. My right thumb got caught in the steering wheel some how and when the cars hit, my right arm was ripped across my body to the left. This twisted my back as well as popping my shoulder. I separated some muscles off my vertebrae from the "lifting" of the shoulder blade, and to this day have a "dent" in my back that my husband can stick his thumb in.

Dejerine, based on muscles insertion/origin and musculature of the shoulder girdle, your Navajo friend makes sense.

[dejerine]

Jadis,

That is fascinating. How was the therapist twisting your arm? Was he rotating it away from your body or toward your body. I don't really know the proper term. Was it extended when he did it? Where was his hand on your arm? When I played football, the trainer used to put water in a bucket and hang it from the elbow just below the bend to help put dislocated shoulders back in place. In wrestling the trainer would just use his muscle strength to do more or less the same thing.

I think maybe in sports the arm dislocates upward and forward because these maneuvers tended to pull the shoulder back and down.

Was your maneuver anything resembling this. I am having a hard time picturing what your therapist did?

By the way, you said in your "FIRST" accident. Did you have a second?

[bob clark]

Hi dejerine,

If you do a Google for "rainforest pharmacology" you'll find lists of plants and their supposed curative properties. They even list many of the indigenous peoples (tribes) who use these plants and have imparted the information to the modern world.

I thought there was a word like "cryptobotonist" or something like that which describes a person who goes into these rainforests to search for new plants/drugs. I can't think of it or find it now. But I once saw a show on it!

If I have time I'll keep looking.....

It's no surprise that a greedy thief like the one you describe would rip-off these poor ignorant people. Hmmm, Manhattan and $24 in beads and trinkets comes to my mind. :) That German fellow needs a Dendrobatid frog blow-dart (http://www.ansci.cornell.edu/courses/as625/2005term/Elaine/Dendrobates.htm) in his ass!

[alan]

All this information is very interesting, and makes sense. Thanks for the Navajo input, Dejerine.

Jadis, both my scapulae are winged, so that's probably a factor in this popping problem. The scoliosis may be as well. No therapist who's seen me has come up with any good ideas yet, and it seems to me that, because they rub with just about every movement of the respective attached arm, the problem continually worsens (like the central pain syndrome does, though there's no apparent reason for that - just bad luck, I suppose.) My aide massages the area every day, and he feels lots of knots in the muscles. I wonder if some type of electrical stimulation of the muscles I could do at home could build them up enough to reduce the winging, which in turn might alleviate the rubbing some?

I really appreciate you folks "listening" to me vent about all this.

[Jadis]

Jadis,

That is fascinating. How was the therapist twisting your arm? Was he rotating it away from your body or toward your body......Was your maneuver anything resembling this. I am having a hard time picturing what your therapist did?

he did two different things....one of which, Booger duplicates when he does my therapy. Both are done face down:

1. My right arm (this is the damaged side) is twisted behind my back with my forearm across my waist/lower back. He would then put his left hand against my spine and his right under my shoulder and pull straight up. He would do this, hold and then release.

2. Right arm, again, straight down my side, while lifting up (as above) he would move my shoulder up and towards my body then put his fingers under my shoulder blade and gently pull the shoulder blade. At least, that's what it felt like. Booger says his fingers were against the blade and caused it to lift, but it was lifting--just not as much as I thought it was :D

By the way, you said in your "FIRST" accident. Did you have a second?

LOL It took three of them to put me in a chair. The second two (CES and T12 fracture #2) are complications of the first two.

11-14-98 - fractured T4-6, T11-12 (MVA)
08-05-01 - herniated L4-S1 (MVA)
05-23-05 - cauda equina syndrome diagnosis
06-13-05 - fractured T12

[Jadis]

My aide massages the area every day, and he feels lots of knots in the muscles. I wonder if some type of electrical stimulation of the muscles could build them up enough to reduce the winging, which in turn might alleviate the rubbing some?

My dad bought this book for me and requested that I takeit to PT with me to see if the PT would do it. She was all gungho to try it and I am glad to say it worked!! It hurt like a $#%## when she was working on me but I did get some release and releif afterward.

Trigger Point Therapy Book - $13.47 Amazon (http://www.amazon.com/gp/product/1572243759/002-2338490-0099239?v=glance&n=283155)

Might be worth it for ur aide to try...

[alan]

Thanks for the link. I'll talk to him about the idea. I have tried trigger point injections in the past without success, but perhaps doing something with trigger points more often than the injections could be done might be helpful.

I realize that, with all the various pain sensations that I feel all over my body, and their intensity, it sounds like I'm exaggerating or even making some of them up. When I read my pain "diary" I write to every few months, it even sounds unbelievable to me, and !'m feeling the pains! It's basically the same entry over and over, except the intensity of the pains has increased, and my scapulae are worse. How can one person have all these abnormal sensations, I wonder (especially during my many long, sleepless nights.) I have no life because of them, which really bothers me when I see the full lives other quads on this site are able to lead.

[Jadis]

I was thinking of your aide - maybe he/she could try some of the massages on you and see if it helps you. I took the book with me to the PT and asked her what she thought and we went thru and picked out spots to try on me for relief -- no shots involved. I've never had trigger point injectsions, so I can't compare the two. :(

I don't think you are exaggerating or making it up. My pain comes in waves and the worst of it -- year-wise -- hasn't even hit me yet. I feel like it's SSDD, and my doctor could seem to care less, so I may as well talk out my ear. I am unable to get across to him how much i hurt. My chair has helped a lot with the amount of pain i have, but it's not a end all.

[jukespin]

I am trying to process this in light of my own abnormality. What is puzzling me is this. When I was at Rancho, which seemed like a compassionate well run zoo, the SCI people seemed to fall into two groups. One was the good guys. They tended to go off and become tricycle athletes and marry born again girls (no letters please, I am all for that admirable group) who didn't mind the fact that sex wasn't happening, and they all got college degrees in engineering or computers and were very inspirational and often wrote books. The other group of SCI patients, the majority, the bad boys, fell completely apart, and found other ways to mess up their already really messed up lives from the injury even further, ways like drug addiction, alcoholism, hanging out with whores, etc.
Alright, I'll cop.

Firstly, my only referent to CP is cerebral palsey. As this does not seem to be what you are talking about; what is it?

The catagories: I want through rehab at the Institure of Physical Medicine in NYC. While there, I alternated being a bad boy (drinking over a quart of vodka a day) with being a good guy ( stopping the drink to the consternation to my drinking buddy, and working very hard at all the rehab stuff). When I got out I followed the same middle path for decades. I got a degree but drank for decades and didn't seek employment. In school I did the basketball thing for the excercise, nothing more.

Out of school, I drifted across the country camping in the state parks and stopping with acquaintances as I went.

On the west coast I got into University in L.A. (right in the Rancho area) but my only friends were antisocial bad boys. I flunked out and drifted up to the Bay Area. After a while I tired of city life and settled in the Placerville area (50 miles east of Sacramento). Here, I drank until some fifteen years ago and then settled into a less harrowing middle course.

Then, about 2-3 years ago I had a few experiances with the local power structure that gave me a whole new perspective on my status in the community. All I did to provoke it was exist. Now I live in a pig-stye and wonder how long I can keep it all together. I don't seek community help because of my experiance with the power structure. If I didn't have and e life, I'd have no life at all.

[Jadis]

There are actually two CPs -- central pain and cerebral palsy. Usually on this board, CP is for central pain.

[alan]

SSDD is definitely a phrase I use on a regular basis.

[Jadis]

LOL I agree alan....

or I just say "fine" or "Good!! U?" and let it go at that. Even to the people in this house. I just don't want to sound like a whiner.

[dejerine]

Jukespin,

LOL to you. Your particular self destruct has been alcoholism. As you already know, it just adds to the problems. Find AA if you haven't already.

My point was, and I do have one (as Degeneres says) is that alcoholism is just a metaphor for what happens mentally after Central pain. Central pain is a disease of the genes that happens to about fifteen percent of SCI people. The genes which produce pain chemicals in the neurons lose their control, and go crazy and produce things that result in acids (fatty acids mainly) setting off the nerves, causing a burning. Also often included are shooting pains, muscle pains, pins and needles, gut and bladder pain. There are other pains also. It is the coup de gras of SCI. But what I was saying is that after SCI, with or without CP, alcoholism is a metaphor for the deterioration that is all too easy to fall into. In fact, it is the default mode. I theorized in my earlier post that it comes from accepting the punishment, sort of like a whipped child may rebel or may shrink. Most of the guys at my hospital shrank. They were not inspirational.

As to your offense from the power establishment for existing, that is what caused me to write the post here. I hurt so much that I do not dare to say what is on my mind much of the time. The burning eats me, constantly, won't let me sleep, wear clothes, and I have long since forgotten what I or any human being thinks. By comparison, there are a fair number here who are amazingly productive and self determined and I could not see how that would be possible. The fall downward is self perpetuating and happens VERY rapidly. Without outside support, I dont think CP is endurable while retaining much humanity.

So I found the "upbeat" comments here sort of a rebuke to me, much like the "power structure" was laying out standards I could never meet. I decided to post and say I am a huge loser, a really big loser, Can the forum just accept me as I am, without being inspirational. And I guess I have a reputation here for being too gung ho about feeling most of the national budget should go to SCI and CP research. I know its not realistic, but how about cancelling the one hundred billion dollar moon mission and solving it. If you want to read about how vanity, and grandiose wastes of money will destroy a country, read "How the Irish saved Civilization", first part of it on why Rome fell.

For me, I could survive only if I adopted Dr. Young's statements a couple years ago that we must restrict our expectations and conserve energy and realize there is dignity in just surviving, when severe CP is present. My heart goes out to the suffering here, and the posts that say how wonderful people are doing because of some herb, some diet, some something that wouldn't help me on a bet, makes me feel something like what Alan called incompetent. Anyone who is failing, and all severe CP people are failing badly, just get tired of the fortunate iron men and women who sit here and take victory laps instead of searching for some answer as to how existence is supposed to occur, now that they are blanketed with really severe pain.

There are people here who weep over their muscle pains, (they are like lightning jolts and your limbs may jump as if shocked) which include tremendous soreness, acheing and fatigue feeling. These muscle pains do drain the life out of you, and people beg for relief here from them. But the big mother killer no possibility you are ever going to feel like a human being is the dysesthetic burning, which just goes after you and won't stop. It is made worse by light touch, like clothing or sheets.

And so while I am all for optimism and especially for humor, I was feeling toward the amazing success stories being posted by a few, like you feel about the power establishment, you aren't welcome because you aren't in the least admirable, successful, or inspirational. Alan said it by saying these stories make him feel incompetent, and if you get to know Alan, you will realize he is way more competent than almost anyone.

For you too, I would find Wise's old post and go back and read it and reread it. You may like me come to feel survival is a miserably low goal, but if it is yours, you can feel like a success,and you will do better as long as you don't get excited about it and go out and start depelting yourself of your energy.

Best wishes to you. You have my respect. Your Father is the creator of the universe.

[metronycguy]

advanced alocolism is very painful by intself, i think the nerve ending die in the distal areas, the way to stop the neuropathy pain is to drink.
maybe they need boise headphones too! :D

[metronycguy]

posted by dejerine..If you want to read about how vanity, and grandiose wastes of money will destroy a country, read "How the Irish saved Civilization", first part of it on why Rome fell.

good point, i am constanely amazed at the number of stores dedicated to fingernail and toenails painting in NYC,

[betheny]

Alan-
I don't have nearly the pain levels you do, in fact the past few years have been bearable w/o narcs. But I have that itchy ants-up-and-down the scapula burning, been miserable lately. Went for a good hippie massage at the local accupuncture-herbalist shop. The itchiness is trigger points, it turns out. The hallmark of trigger points is referred pain, they say. So you have people rubbing where it hurts, but that isn't where the damage is! The massage guy said I'm a mess, so I have to go back regularly for a while, then go to maintenance level.

The scapula stuff on me turns out to be trigger points in the lats and that neck-to-shoulder slope muscle. He broke one down last night and the difference in that side of my neck is visible. I'm amazed.

I googled trigger point therapy and trigger point massage last night. It seems to be accepted even by mainstream medicine, because doctors use trigger point injections.

Sometimes they correspond to accupuncture points, sometimes not.

My point here is the guy last night told me that TP's get bad, go chronic, get calcified, but he has never seen anybody that didn't at least improve with TP massage.


I'm sold. $55.00 well spent. Now if he can just kill the ants on the other side...You should try this imo. Good luck.

[jukespin]

Thanks dejerine, now I feel both a lot better and a lot luckier than before.

I guess that even just having retained my own autonomey for forty-seven years is a worth while goal. I have never had the levels of physical pain that you seem to have to deal with on a daily basis. And as far as the power structure goes, fuck em! I just wish I could get the A.G. to look at the documentation I've kept but that don't look hopeful. For me, diet helped tremendously with the pain and I don't use narcs on a daily basis which is new for me in all the time I've been sci, but then I don't trust the AMA to be looking out for my best interest to the extent that I once did either and maybe that helped me put narcs behind me.

[alan]

I have found a massage therapist who'll be coming over, probably next week.

Today, I'm wearing one of those reverse-bra looking posture improving things that are supposed to keep one's shoulders from leaning forward (along with my regular corset.) It isn't exactly comfortable, doesn't really seem to be holding my shoulders back, and gets in the way of my aide's back massging, but it does seem to be holding the scapulas down, so there's less popping. Any little bit probably helps.

[metronycguy]

i am surprise that you guys dont take anything for the pain. wow, those platitudes and boise speakers system must work;)
the nurse at he hospital Monday was quite concerned about the amount of diludad and morphine they needed to qwell my pain after SCS electrobe removal the procedure.

[firesmurf]

i have found that your actual ability to "cope' all really boils down to the things that happened in your past.by this i mean,basically that if I had not gone thru watching my youngest son actually slowly die from liver failure and at,just in the nick of time,just like in the movies,get that new liver that saved his life,i would have fell apart long ago,honestly.when this happened,i truely found out that i am much much stronger than I thought i could ever possibly be.if what happened to me,had happened before my son almost died,i would be in some psyc hospital bouncing off the walls(but only on a good day) do you know what I mean?This showed me alot about how to cope.but only because it was that i HAD to,i did not really have much of a choice,but if it was just me,that sterngth may never have actually showed itself.
i am severely depressed and also live in constant pain and most days I wish i were dead,but i know that if i took myself outta the game,my son would be totally lost without me.in just the past six years,this is what we have been thru:in 99 my son vomited up huge amounts of blood at school one day and honestly up to that point,we did not even know he was even sick.he was only two months into 7th grade.after some hellish months,we got that miracle only 7 hours aftre they had placed him at status 1 and went national from regional on the 'list' got a liver and life went on.only about one year later,I found out when I had an MRI that I had a herniated c 6-7 but also they found a cavernoma lurking inside my cord at the c 8 level.I had the fusion done and during the next surgery for hardware placement,right after,I noticed that my son was really becomming rather depressed,he ended up being placed on prozac and the most god awful hidious year long manic type reaction to it and any other ssris that were tried,two weeks after any and every dose raise or switch to a different ssri,he would have ann anger explosion from hell,which usually culminated in a scene out of COPs being played out in my living room and the niehboors house.he once almost got out the door with a butcher knife and wanted to plant it firmly into my assh*** neirghboors chest.by the way?my normal caring fun respectful really great kid was gone for about almost a year and was replaced by this chemically altrerd really scarey kid that I did not give birth to at all.really.i was afraid of my own child for about six months.well we finally got him into the adolescent mental health facility that I knew was the best around(we also found out the hard way that mental health services for kids in crisis are very very pathetic at best)anyway this wonderful veery knowledgable doc knew almost right away and this was what I was suspecting too,that my son was reacting to the ssris and this was causing all of this off the wall behavior.there is a bi polar condition out there called bi polar III?it is not a true bi polar but it is created in some teens as a result of the way it affects their brains.honestly,after he was finally off all of the ssris,my son came back,almost totally.he still has some problems but since he was placed on depakote,he has been doing okay with that,during all of this nightmare,was when I was told that my cavernoma had to come out and it had already bled twice and if was not removed soon,the next bleed wouls most likely paralyze me from the chest down.so i consented,despite all of the damage I was told it was going to cause to my legs and the fine motor in my hands,I was not told or we did not know just what else was going to be damaged.well I ened up as of right now with the central pain in my L hand up the arm and over both shoulder blades,i also developed RSD in my R leg along with about five other problems.some structural and due to the brown sequard and the loss of the ability to actually walk right which is destroying the cartlidge and the actual bone because of the RSD.I have tons of neuro problems as well.,any way while I am trying to just deal with life,my son(the same one) ends up falling off his freinds car(the trunk)when his freind thought it would be really :fun' to take off withmy son still sitting on the back.well he flipped off backwards and landed headfirst onto the pavement which caused him to develop a severe head injury from the bleeding it caused intothe frotal lobe of his brain and also a double skull fracture at the back along the surures?he was ina coma for about a week and then went into the lighter comas for about the nest two weeks and finally came out.he spent the next three weeks at gillette childrens hosp just for rehab and the next six outpatient rehab and is doing pretty well now.
Oh and i forgot to mention the affair my husband had for a few months after almost 23 years of marriage.yea,that was fun.we did,after alot of talking(this was new to my hubby and part of the biggest problem)and alot of counseling and alot of work on his part,really,i did not think he had it in him,but he is a new and improved hubby who has been withme now thru all of my nightmares.we actually have a better marriage now than we did when we first got married.starnge but true.
Oh i almost forgot the latest.back in sept just a few short months ago,i was very suprised to find out that I had developed a brain aneurysm(this despite having always had hypotensive BPs)anyway after alot of scarey time,it was able to be coled and I am still alive and kickin.

Now how I have been able to actually get thru all this?I honestly don't know.but thru it all,after having gone thru one of the biggest,most devistating parental nightmares out there and actually maing it thru that,honestly,i do feel that anything else is actually "doable'.you know what I mean?if I did not have such wonderful people in my life to vent to and just to give me the courage to actually get out of bed in the morning,when all i want to do is just lie there and feel sorry for myself,cuz believe me,and as you all know WE DO have the right to have a big pity party at least once in a while.I wouldn't be here.my son is my anchor right now.I KNOW if anything would ever happen to me,god,my son would be sooo incredibly lost.I am the only one he will really talk to and open up to and believe me.he tells me everything.sometimes thats good,other times,I really would reather not know?

i think god set the stage for me by having me go thru what I did with my son.this really really was a huge wake up call for me and forced me to have to find that inner strength just to be able to up to the u of m every single morning and look at this little 92 lb little boy who was sooo orange that he was almost green.this is when you really do find out what you are made of.

but all of this stuff just keeps slamming me in the face over and over and over.honestly,an aneurysm?? geez,like I wasn't suffering enough already?i am amazed at myself some days and others I am a pathetic mess.i am not as strong as i once was though,that I KNOW for sure,and my depression just seems to suck me in more and more,butr i keep pluggin away and some days,I honestly don't know why.but you are not alone in your thoughts dejerene,not by a long shot.I am not a super person either,I have no energy to write books and say look at me,I went thru hell and wow am I ever doin great,cuz i am not.we all just muddle thru our days somehow and eventually we just 'deal' with it someway,somehow.But i do owe all of this to one sick little child who showed me what i was capable of.i wouldn't probably even be here still if his major life threatening crisis had not happened before all of my stuff just hit the fan.

i just want to know WHY...why me,why us,what did we ever do in our lives to deserve allof this???thats what gets me the most.i just don't know why..

sorry for the ramble,it did feel rather cathartic to get that all out though,thanks.firesmurf

[jukespin]

i have found that your actual ability to "cope' all really boils down to the things that happened in your past...thanks.firesmurf

I'm going to tell you right off that I don't have anything really appropriate to respond to your story with; I had thought that "Mr Pain" would have answered you by now and decided that, if he hadn't, I say something no matter how lame.


My family is fractured into solo units and little pairs for the last decade now and that must bear on this anecdote.

The youngest of my two sisters is four years my junior so that makes her about fifty-eight now. She married young and married the first guy she ever dated; the first guy that ever showed any real interest in her. The whole rest of the family did not approve of the guy but what the hey, he loved her.

They had their first and only kid some three years later, a boy, and he had a congenital heart murmur passed down through the father's side; his genes. As a result of this problem my sister and brother-in-law worried and fussed over Joey, their son through his childhood into his adolescence. He grew into a fairly normal and average youngster with no indications of any problems and the heart murmur, although still present, was just detectable so they and we all stopped worrying about it. He was a bit of a user and a weasel but I fault his dad for that.

The family, never close, fell apart after one of my brothers talked another into legally 'stealing' my mother's estate. She was getting senile and had allowed my younger sister and her family to "move in on" her in her place in Wickenberg, Arizona.

Worried that they would take it all, the rest of my siblings (less me, I was "out" of the pack by then) took steps to get sis and her hubby and kid out of our mom's place and secure what was left of her estate. When the smoke cleared, the brother I mentioned above had put two thirds of her money in an account and the one he got to go along had the other third. It soon developed that they intended to keep what they had for themselves. The rest of my siblings were furious and there has been no real family since.

Meanwhile, my lil sister and her family had settled down in a house they were buying in Wickenberg. Joey, their son, was working as a mechanic in the town and had a regular girlfriend with a kid or her own he'd brought out there with him from the Bay Area, California.

Then one day, Joey came back from lunch to the garage he worked in and dropped dead. Without any hint of incipient trouble with his heart, it suddenly quit on him.

Then, just two months later, my sister came home from working as a teacher's aid one day to find my brother-in-law, her husband, dead of the same thing (apparently) that had killed her son. In the space of just two months she had lost the only two people left that she was close to in the world. For her sake, I'm glad to say, she has developed and maintained a close relationship with my older (of the two) sister, who lives in the Bay Area.

I know this story impinges only in the slightest way on all that you have gone through and go through on a daily basis, but then I said right up front that I had nothing very appropriate to respond with.:o

I truly hope that you can continue to find the strength to cope at least as well as you have been doing.

Don't give up on the CC forums; there's plenty of good people, feeling and helpful information to be found here.

For whatever it is worth, welcome.