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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 9:14:54 AM   
Termyn8or


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"You're wrong (as I understand it)"

Perhaps the implication was too strong but I didn't say they were the same thing. Just pointing out a similarity. I don't want to go into whether I didn't express quite right or if you misread it, suffice it to say, yes what they call cancer does differ from a viral infection. We are not in disagreement here.

However this does nothing to explain the fibro. I think that years from now if we manage not to become extinct someone will find a simple cure and everyone is going to be smacking themselves in the forehead, figuratively at least. It affects the whole body, that has to tell us something.

I think that at this time in our history that R&D is pointed in the wrong direction and that they wrong people are in control. This applies to everything. With any luck we might come out of these new dark ages and be more effective in our quest for knowledge, useful knowledge.

T

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 9:22:16 AM   
Lockit


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I firmly believe that fibro is a neuro problem and don't understand sending patient's to anyone that doesn't fully understand neurology.  I believe they will find a genetic disposition at least.  Whether enviornment plays a role or not... I believe there is a genetic disposition for it. 

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 9:29:28 AM   
camille65


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quote:

ORIGINAL: Lockit

I firmly believe that fibro is a neuro problem and don't understand sending patient's to anyone that doesn't fully understand neurology.  I believe they will find a genetic disposition at least.  Whether enviornment plays a role or not... I believe there is a genetic disposition for it. 


"A University of Michigan study, published in The Journal of Pain, shows that fibromyalgia is associated with central nervous system abnormalities evidenced by patients’ elevated sensitivity to auditory and pressure sensations"

"there are "overwhelming data" that the condition is real, is characterized by a lower pain threshold and is associated with genetic factors that can make some people more likely to develop fibromyalgia."

From ScienceDaily.com


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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 10:02:16 AM   
Lockit


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They have had reports on studies for some time that lead to all of this, but it isn't widely accepted and the only arguement I have heard on this is that there isn't a definative test for it.  I went toe to toe with a man who teaches at a medical school that had a web site, who stated that fibromyalgia wasn't real and was teaching his students this.  I wrote to the web site asking permission to post a link from my site to their's to share with other's what this man was teaching medical students.  I was pissed!  I do believe, if I remember correctly, he said it was all in our heads and not in a neurological way! 

I was very pleased that they allowed me to put the link up and lead people to this man's bs... but they then put two other doctor's responses to his inwhich they disagreed with him.  Still the man was teaching this to students who are coming out and not treating us.  I haven't done research in a while on fibro, but it seems we still have to prove it is real by a definative test.  Which I felt the studies at the University of Texas proved to some degree... as well as many other studies.

Just with the cadasil alone.. there is a genetic marker... there is a difenative test... and yet most doctors in the US don't know of it or anything about it.

Something is very wrong with how they are doing things.  If the studies do no good in actual practice and treatment... we get no where.

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 3:44:24 PM   
lovingpet


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quote:

ORIGINAL: FullfigRIMAAM1

I think it unconscionable that you have not found a doctor capable of effectively dealing with your pain while also treating the underlying problem.
There are pain medications to take care of this, and there is no reason you couldn't find a competent group with doctors who respect/listen to you, rather than treat you like an addict.    M


That is kind of at the heart of this thread.  It is a lot harder to find a practitioner that will listen and does do what is really in the best interest of the chronic pain sufferer.  If you have something that is "testable", "quantifyable", then that changes everything because the you have a "real" illness.  When the test keep coming up blank or the traditional interventions fail, this is when the whole thing falls apart.

That is what we are all saying.  It just simply shouldn't be this hard to just get the help we lead to live some semblance of a normal life.  Why do we have to find ourselves in the role of convincing doctors we are sick?  Why is it that the patient more or less has to diagnose him/herself?  Why are we put in a position to beg for the medications and treatments that we know can and will work?  There is a flaw in the system.  There is a bias in the general medical community.  These misconceptions and, in my opinion, malpractices are costing people there lives both in terms of living it and, in some cases, the actual ability to stay alive.

We all sincerely wish it were that easy.  As a fellow member of the chronic pain community as a whole, I can assure you it is not.  It is sad, but true.

lovingpet

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 4:24:13 PM   
Termyn8or


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Let's say it is all in your mind, well if so then that should be dealt with rather than dismissing the problem offhandedly. There is indeed a fine line between the neurological and the cerebral when it comes to this, and as much as they do know, I think knowledge is lacking.

I think when they went into the practice of specialization, which is for insects BTW, they are discarding much about how the body and mind interact. (misworded a bit but screw it)

Most reseach into anything is rarely self funded, therefore is rarely self directed. Thus it is possible that the best ideas and intentions of researchers can be swept aside. There are other areas of research that are just about completely neglected, that is until someone comes along able and willing to fund it. Sometimes it never happens.

Just one (unfunded) question, everyone with fibro, in what country do you live ? Is this another malady that seems to be more concentrated in the US and possibly the UK ? If so I think that might be an important clue. Or is this common to all countries (environments) ? I mean are there people in Africa and Sweden whatever with this condition ? Their number, are there as many ?

Sorry to appear ignorant but I have never asked that question, and I am not sure if it has been asked at all. If it's found that this condition is almost peculiar to a few countries, that would be important. People point to evidence that, for example in the US we have the highest rates of obesity, hypertension, diabetes, heart disease and so forth. Is this another one ? I would like to know.

Here's the funding - a penny for your thoughts. (Pause; just imagining myself mailing pennies to a whole bunch of people. A postage stamp is thirty something cents).


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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 4:27:10 PM   
Lockit


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Yeah, the medical community didn't listen to us... we were not professionals... so they the professional's did what they felt was best with my son.  Now... after brain damage... they were proven wrong and us non professionals proven correct... but it was too late by then.  Even with a great case and being able to prove they were at fault, we had malpractice limits and couldn't sue.  So they can do what they want in states that have the limits.  They can and do win... and many suffer.  And now without pain coverage, I get to take care of him.  I'd say they did well... no accountablity... it's the non professional against the professional and they typically win.

But I am still looking for the loop hole.  I gave up trying to convince them to do the right thing or to bring about change.

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 4:33:53 PM   
Lockit


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I don't have the figures on the number's of fibro patients around the world, but from what I remember, there wasn't a huge difference in many countries.  I knew people all around the world with it.  I had fibro since infancy.  That is more rare... but it happens and they are finding more um's with it all the time.  But they do try to blame it on being overweight much of the time.  There are a lot of factors, but quite often, one hurts so bad that they limit moving... which isn't good to do totally, but after working, family and then cooking, they will often cook what is easy and the weight and poor diet compound things.  But fibro wasn't and isn't envoirnmental... it hits all people, all gender's, all sizes and situations.  They once said it was people who were abused... they said it was people off their rocker... they said it was only women... they said a lot of things that were not true and to this day, continue.

At first they thought there was a connection to this with cadasil... nordic families... until they found many cases in Japan and researchers there working on it.

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 6:17:35 PM   
ShaharThorne


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quote:

ORIGINAL: Lockit

But fibro wasn't and isn't envoirnmental... it hits all people, all gender's, all sizes and situations.  They once said it was people who were abused... they said it was people off their rocker... they said it was only women... they said a lot of things that were not true and to this day, continue.


And that is what drives some on us mad.  We live with our bodies 24/7, not the doctors.  We are the one who hold the cards in our hands and want the doctors to offer clear, logical DXes and treatment plans and yet they treat us like we are mere fire ants that need to be exterminated.  They are offering us illogical and incompotent(?) answers without researching the diseases at all.  We are smarter than the bunch of them because we believe in educating ourselves of what we know we have.

Now, where is my bat of knocking Social Security on the head for leaving me lagging for 4+ years while I dealt with a potentially deadly episode of bipolar (mixed episodes)?  My mother is threatening to use my father's old shotgun for not listening to me all of these years!

*Will explain what mixed episodes in bipolar disorder is if someone is willing to learn.*

Formererly ElegantAlexis (Shahar)

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 7:24:57 PM   
lovingpet


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I have been thrown every last one of those misconception you discussed, Lockit.  I am still trying to figure out how on earth you convince know it alls that they don't know it all.  In the meantime, the situation just gets worse and worse.  Let's just talk financially.  I have been unable to work in any fashion for two years now.  I can still muster myself together for some level of recreational ventures, but that is completely different (breaks on my schedule not someone else, cancelling without it going on my "permanent record", etc).  We are scratching pennies now.  I have always had problems with employment because I have been this way to varying extents my entire life.  It was even an issue with school attendance and minimum participation to be part of various activities in school (I am talking grade school and up).  I have no viable work history and no one who will give me much of a reference because of my time off, need to rest constantly, and the like.  Even if I ever get better I have an uphill battle in the workforce since I am reaching mid work life and have a curious lack of skills, history, and credentials.

Lets talk housing.  I am in a bad neighborhood as it is.  It's what we can afford.  I live in a second story apartment with no elevator.  The flight of steps are steep.  Now on the inside I have narrow hallways and an antiquated bathroom.  Laundry facilities are downstairs.  My lease says I cannot install ANYTHING to the apartment.  This means no handrails, grab bars, etc.  Needless to say, we are going to have to move.  The bad part is, in our price range, there really isn't anything any better and is further compounded by the limits we have to impose on the search.  What am I supposed to do?  Move back in with my mommy with a husband and two kids?  Family does not have space even if that weren't a perfectly repugnant idea to me.  I could rent something I know we will be evicted from within months because we can't make the rent.  We have no money for purchase and our credit is worthless due to medical bills. 

Lets talk about family.  A lot of fibro sufferers are folks in the midst of raising families.  My kids are out of control.  I literally can't keep up with them.  I am ineffective at discipline both from lack of options and inconsistency due to just being plain sick and exaughsted.  I can't get a meal on the table.  Okay, expensive eating out or some nutritionally defunct meal that I can just heat and serve.  My grandmother has stepped in to clean my house because there is fair little I can handle on my own anymore.  My husband is gone about 60 hours a week working since I am unable to contribute financially.  I am alone with the kids and just plain lonely most of the time.

Do the docs that dismiss us or give us half assed answers even stop to think about all this stuff?  Do they every consider the collateral damage that is done?  Of course not.  It is not happening to THEM! 

Okay, so I have gotten pretty pity party today.  I am having an especially bad day and yesterday wasn't much better.  Please forgive my less than stellar attitude.

lovingpet   

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 7:43:01 PM   
aravain


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You're talking about dysphoric manias, right Shahar?

They are absolutely horrible.

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RE: Chronic Pain, or fuck the Doctors - 2/26/2009 8:00:56 PM   
ShaharThorne


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Being both manic and depressed at the same time.  Yeppers!

I would be crying my heart out while bouncing off of the walls.  At least the tears do clean off the walls all of this dreadful smoke.  Just add some bleach wipes and the house would be spotless.

Thing was, I was not aware until a few years ago about how I have been since I was 12 years old.  I thought being hyperactive and having baking sessions was a part of life.  My parents were not home at nights, leaving me in charge, so I just dealt with it (they worked graveyards as nurses).  It took this recent hospitalization for my mother to realize that I have been needing help in the worse way.  I kinda informed her that I have been having episodes since 12 and about my manic cleaning and baking sessions (I am not mentioning the hypersexual ones...at least I do practice safe sex).   Of course, taking an OD of trazodone just so I can get some sleep while suffering from a PTSD episode at the same time did not help (I was not trying to kill myself, I just wanted some sleep after being awake for over 4 days).

Just listen to me ramble on...the manic phrase is kicking in...LOL!






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RE: Chronic Pain, or fuck the Doctors - 2/27/2009 7:23:21 PM   
pixidustpet


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quote:

ORIGINAL: Lockit

I firmly believe that fibro is a neuro problem and don't understand sending patient's to anyone that doesn't fully understand neurology.  I believe they will find a genetic disposition at least.  Whether enviornment plays a role or not... I believe there is a genetic disposition for it. 


my "wonderful" neuro specialist who just told me that he couldnt do anything for me....

told me that pain will not wake you up.  "when you're sleeping, you cannot feel pain."

i dont have MS.  i am in pain, i cant walk straight because my balance is fucked, i know i have fibro.  my former GP (now fired) kept pushing antidepressants at me, to the point that i told TheEngineer that if she said that word again, i was going to gleefully asault her.  GLEEFULLY.  with malice aforethought.

i've not slept a full night in probably 20 years, except the few times i was on painkillers for the knee.  i am so tired...45 minutes of sleep followed by 15 trying to get comfortable night after night is no way to live.

and hearing camille's story?  makes me discouraged to start trying again.  sometimes ceasing to exist sounds like a better plan.

kitten, oh no, i'm not bitter, not at all.....

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RE: Chronic Pain, or fuck the Doctors - 2/27/2009 7:38:40 PM   
Lockit


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I think that the neuro's don't want fibro patient's because they don't have enough answer's, so while many will admit they believe it to be a neuro problem... that is our problem as they would rather not be in charge of a difficult patient with a difficult disease with few answers.  No one wants to be an expert of something they can't be an expert in.  Why not send the problem patient to someone else and why fight to get them to the right doctor's.  I also believe that doctor's will say rude things to you and treat you poorly or will simply negelct you until you go away.

Sleep?  That friggin alarm clock in the brain... the pain... sleep... oh how it would be nice!  ( I have found a way to get sleep... but... it causes more pain.  I have slept better on it than any other thing and yet, becasue you don't move as much you hurt more, but sometimes the pain is worth the sleep when you are that deprived.  Memory foam mattress.)

I tell people my story that is current and no one can believe how I am being treated... except those who are being treated in similar ways!  I never wished ill on anyone... but I think more doctor's should have a long dose of fibro... then let's see how things change. 

I hear you lovingpet... been there... it was hell.  I even ended up homeless with it all.  I have helped get some things going locally at different times by sharing the all too real stories of how this affects people.. but.. still no real answers.  Many of us teamed up to help one another becasue sooner or later... if the spouse left or couldn't handle all the expenses and the hell... many ended up homeless or living with family.  The resource agency I worked with helped people find work.  They never found one person with fibro a job.  I think that says a lot.

Shahar... it is really good to see you!

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RE: Chronic Pain, or fuck the Doctors - 2/27/2009 8:33:29 PM   
camille65


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quote:

ORIGINAL: pixidustpet

<snippity snippted>

and hearing camille's story?  makes me discouraged to start trying again.  sometimes ceasing to exist sounds like a better plan.

kitten, oh no, i'm not bitter, not at all.....


I'm sorry. The frustration got to me = mini meltdown, I am sorry for the negative result. Dang I'm glad I deleted bunches.



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RE: Chronic Pain, or fuck the Doctors - 2/27/2009 11:38:34 PM   
Hippiekinkster


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quote:

ORIGINAL: Lockit

I firmly believe that fibro is a neuro problem and don't understand sending patient's to anyone that doesn't fully understand neurology.  I believe they will find a genetic disposition at least.  Whether enviornment plays a role or not... I believe there is a genetic disposition for it. 
http://www.cpmission.com/main/physical.html

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RE: Chronic Pain, or fuck the Doctors - 2/28/2009 1:39:52 AM   
pixidustpet


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quote:

ORIGINAL: camille65

quote:

ORIGINAL: pixidustpet

<snippity snippted>

and hearing camille's story?  makes me discouraged to start trying again.  sometimes ceasing to exist sounds like a better plan.

kitten, oh no, i'm not bitter, not at all.....


I'm sorry. The frustration got to me = mini meltdown, I am sorry for the negative result. Dang I'm glad I deleted bunches.




*hugs  you gently*  not allowed.  you're allowed your frustration and your pain is absolutely a terrible thing. 

i've been being  told for about 5 years now "its MS.  you need treated for MS." and the neuro being a bastard isnt helping my outlook.  that, a sudden death in the family, my daughter being a pain in the ass (she's 26 and Knows It All), and my stomach acting up is playing merry hell with my equilibrium. 

the fibro stinks (and yes, lockit, we have a memory foam mattress.  i'm *still* not sleeping  even after 8 months on it) and foot cramps are being the bane of my existance at the moment.  having to stand holding onto the dresser cause i'll fall over otherwise, on my toes to bend the toes back far enough to loosen the spasm at the bottom of my feet makes me say bad words.  literally.  "bad word, bad word, bad word"  this cracks TheEngineer up when he hears me. 

just not getting a hella lot of joy in life at the moment, other than being loved.  and that helps a great deal.

kitten, still nauseous and grumpy

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RE: Chronic Pain, or fuck the Doctors - 2/28/2009 3:58:32 AM   
Hippiekinkster


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Something else that bugs me is drug testing. Now, I can MAYBE see trying to determine impairment on the job. But is a worker who smoked a bowl a week ago impaired? Hardly. Oh, I'd love to have a thread about that.
But, as it concerns pain management, most so-called "pain management contracts" (uh, not legal, people) allow for the "random" testing of people in pain. Now, if I'm in pain, it stands to reason that I would REALLY like to alleviate said pain, yes? But if one tests positive for anything other than what the "doctor" who controls your fucking life prescribes, you are automatically labelled a "doper" and are subject to immediate dsmissal. I would like you to think about that. I have used aspirin with codeine from Canada. They are OTC there. Here, I am a doper because they find morphine in my system. Uh, almost no fucking way anyone can get "high"  from those. They are for pain. That's all. But I am an evil doper if I try and get pain relief from EIGHT fucking milligrams of codeine. >snort< That's part of the moronic stupidity of the American Right-Wing "War on People Who Use Drugs". 

  It's a given that the shitbag Fascist idiots who work for the DEA have no clue. But one would think that a PAIN DOCTOR might think that if someone is taking aspirin with codeine, maybe he is undermedicating the patient's pain? Oh no, of course not, Doctors are perfect. They know everything. I'm on a roll here so I'd best stop before I actually say anything.
The point is, if people are seeking pain meds outside of a pain  program, maybe that program is flawed, and is undertreating people.
  There are whole groups devoted to obtaining adequate analgesia despite doctors. I won't solve anything here. I wil state unequivocably that I know a fuck of a lot more than any doctor about my pain, and I know what alleviates it. And I know that getting up to the massive quantity of 60 mg/day of oxycodone hardly qualifies me as a thrill-seeker.
  Any doctors reading this? You are ideologue assholes. The vast majority of you have NO CLUE as to pain mitigation. You are agents of the DEA and you should not be allowed to practice medicine.

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RE: Chronic Pain, or fuck the Doctors - 2/28/2009 4:34:00 AM   
Lockit


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They thought I had MS too and I kept saying it wasn't MS.  It didn't line up with my symptoms... I knew it was something else.  They wanted to wait and see but called me an MS patient.  I didn't want any treatment and I am glad I went with my gut and my own research.  It wasn't MS and I got very lucky finding a doctor like Patch Adams who was getting into politic's.  He knew of a rare genetic disease and knew I had it.  Unfortunatly he was killed doing a charity bike run when a police officer said he was safe to cross a street and was hit by a car.  A good doctor.. gone.  Most everyone with cadasil was first diagnosed with MS.  The medical community in the state's simply doesn't know about cadasil and treat people for MS, when it isn't MS.  I often wonder what harm is done when they treat the wrong disease.

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RE: Chronic Pain, or fuck the Doctors - 2/28/2009 5:00:17 AM   
LadyEllen


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As some here will know, I have arthritis – in the spine mainly but also it affects hips, ribs and shoulders. I have little to no pain and remain remarkably unaffected by stiffness and able to live what I’d think was pretty much normal life – OK, I cant do some of the things I could before all this hit 22 years ago, but then a 41 year old shouldn’t necessarily behave like a 19 year old anyway.

There is a simple reason for this, for me having avoided the usual prognosis for this condition if left untreated (total immobility, never ending pain, eventual death from even a minor respiratory illness) – access to doctors and medicines through our National Health Service.

Through such access it has been possible for me to work full time for 20 years I likely should not have otherwise had, live well and take part in raising two kids. And it has been possible for me to put in the effort and commitment to building a business that employs others.

Without it, I should be in the position that so many describe here; unable to work, “living” on welfare, possibly homeless or still with parents, helpless, desperate and suicidal, if I weren’t by now already dead from pneumonia or something similar.

If tomorrow the treatment stopped, I should face such a situation no doubt. Except I would simply not go quietly; living where I do, I can get hold of “non prescription” equivalents of my treatments quite readily, and as a result become a drug addict proper rather than a drug dependant patient as I am now. It would make things more difficult for sure, it would present problems all of its own for sure, it would be dangerous for sure, but the alternative of no treatment at all is simply unacceptable and the prognosis thereof equally so and not just for me but for my kids.

Yes, I’m addicted – but like many others I show the lie that is taken for gospel by officialdom and the general public that those dependant on narcotics are useless scum and/or weak and/or immoral and/or simply looking for a high. The same range of wise commentators who condemn the likes of me whilst opening a second bottle of booze - because of course they’re connoisseurs, having a good time, relieving stress or indulging some equally hypocritical and nonsensical reason for their addiction to alcohol – a substance far more dangerous and socially damaging than any painkilling narcotic, whether used as such or not.

It seems to me that the comments here illustrate even more – for there have been more than enough similar instances on threads here in the past – that the US needs an NHS too. For all its faults, ours is the best thing we have in the UK. And for those who rail against such ideas, who seem to think that their current health is something that is a given and that insurance will always be there for them, consider that at age 19 I might well have thought the same way; this thing came out of nowhere, crippling an active teenager with a great future almost overnight. If we could predict if, when and how we would become ill then we might avoid it – problem is, that’s a difficult thing to do – and once one does suddenly fall ill, help is needed regardless of ability to pay. Such help becomes cheap if it allows people to participate economically who otherwise should be unable – and not only in terms of the tax take vs the welfare burden but also in terms of the social profit and loss account.

E


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In a test against the leading brand, 9 out of 10 participants couldnt tell the difference. Dumbasses.

(in reply to pixidustpet)
Profile   Post #: 80
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