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Posted 8/21/2009 10:35 PM (GMT 0)
As I sat here in my recliner waiting for the hour to pass so that I could take my break through meds....I wonder what the Psychologists, Psychristists, PCP specialists, Orthos, MDs, Therapists and all those other know-it-all specialists would say if someone that was really good (were talking best selling author) took down each of our stories about the pain.....the hard tasks of getting the right meds....the punishement we go through every day just to make it through and made it into a huge novel or maybe even a series of books called "Here Comes The Pain" or "Through The Eyes of the Average CPer" or some other catchy title.

Do you think they would get a good look at the everyday toil we go through to get the care we need or the things we do to distract ourselves from the horrendous pain that we feel every moment of every day?  Or do you think that they would just anylize (spelling) or pain and complaints as us CPers being lame.  Do you think that the doctors would give us better care or would they simply shrug us off and pretend that we don't exsist?

These are the things that go through my mind each and every day.  What do you all think?

Hugssssss

Scarred

Posted 8/22/2009 5:47 AM (GMT 0)
Scarred, I think you made a very good point. I think it would be wonderful for a book like that to be written. Our stories need to be told. There are so many people out there, us and tons more in this world suffering on a daily basis. Our perspective needs to be told. Real life day to day stories...I think you might be onto something here...And I like the titles you picked. I think it would be on the best sellers list for certain, and then part II and III, etc. There are so many stories to be told.

Anice
Posted 8/22/2009 1:33 PM (GMT 0)
I often think about writing about my experiences with pain. I wish I was more articulate. Id love to do it but i just wouldnt be able to find the words to express it. how can you? Its so hard to describe the pain to someone who's worst bout of pain may have been a broken arm or sprained ankle. they just can't know untill they experience it themselves. The people i work with just dont know how much of a challenge it is for me to get up and be at work. for me every day at work and functioning is a major acheivement that I pride myself on...They take their painfree lives for granted and I resent that sometimes. Its like they think well if I made it here to work Im obviously not in that much pain, as they see pain on such a lower level

I especially hate it when (and it happens alot):

Quote: "Ohhhhhh my neck is sooooooo sore-but i'll bet its nothing compared to what your pain is"

Quote: "Oh your in pain why dont you go home" (Id rather be working and occupying my mind)

The best analogys that I have come up with that I feel is comparable with the pain I am in are:

(Either SIJ Fusion) like someone is in there with a crowbar prying them apart

(When both flare at the same time): Like I am being ripped in half

I agree with both of you. i think thats why I like this forum so much. You can vent and express with people who wont just smile and nod but not really understand, but who know the beast
Posted 8/22/2009 4:40 PM (GMT 0)

Shanno I'm just like you - I pride myself on still managing to work, and it's often the only thing that keeps me sane through all this. I hear those same two comments all the time and they drive me nuts! I'm glad I'm not the only one who finds them so annoying.

I'm a writer by trade and one day I hope I will write just such a book. Even then, I think it's hard for people to understand though, especially, as you say, when the worst pain they've experienced is a broken ankle or something. For now, I just write a blog that my friends tell me is really useful for demystifying what I go through on a daily basis. It's also a really good opportunity to vent!

Bandit

Posted 8/22/2009 5:01 PM (GMT 0)
Scared,

In my opinion, the docs/specialists wouldn't even read it.  If they won't listen to 5 minutes of "complaints" in the office, why would they take 3 hours of their time to read a whole book?

So discouraging, I know, but it seems that's just the way things are.

-Frances

Posted 8/22/2009 6:54 PM (GMT 0)
Scarred,
While I also think the basic idea is great, I have to in reality agree with Frances. We want so much for others to understand, yet if most don't want to understand now (friends, family, employers, doctors) what's to motivate them to read. It's most useful function would probably be for other CPP's to let them know they're not alone. Now that might be really helpful.

Please don't think I'm shooting down the idea. I wish it would work, but I don't think it would.

What I DO think we need is a huge Public Relations campaign to rival that of the anti-drug abuse ones. Not that I'm against those, but they give a one-sided view of pain medication. And since prescription drug abuse now officially tops the list of drugs of choice for abusers, we're really in for it. We need Oprah, Dr. Oz (who's getting his own show this fall, I understand) and maybe even Dr. Phil (who I don't care for anymore but he does reach an audience) to promote the BENEFITS of pain medication when prescribed and used properly, and how lives are DESTROYED with undertreated or untreated pain. That's the kind of campaign I think would get the general public thinking. Because everyone talks about what's on Oprah! If a book went along with it, great, but it needs the PR campaign to be the major thrust.

As Frances said, "so discouraging." Although I would add this - we are a lot of people here, both those of us who post regularly and those who read but never post. If organized (with Peter's permission, of course) and well-directed, a letter writing campaign could maybe get us off the ground. I have long thought of this BUT I can't even organize my own life at the moment! If I ever get on the other side of SSD and dentists and precancerous stuff....but right now, no energy for that. Doesn't mean others can't!! idea

I will say - and I know we can't get political - I HAVE called ALL my federal representatives about my views on health care. And while I think there are legitimate things to debate, I hope people reading this won't be scared off by tactics that are inaccurate and designed by the big insurance companies and pharmaceuticals to throw us all off course. When you don't have health insurance, like me, your health care is already rationed. And if you don't think it's rationed by your health insurance carrier, think again. It's a little process called "preauthorization". Ok, I'd better shut up! shakehead

PaLady

Post Edited (PAlady) : 8/22/2009 1:00:39 PM (GMT-6)

Posted 8/22/2009 10:00 PM (GMT 0)
You know I think you're right. There is just no way anyone but those that are in chronic pain can really understand our pain. But then again it's our "problem" as most people would view it which I've never understood. It's quite sad taht it takes an injury to most for them to really understand what we long time CPers feelings.

Even the doctors who usually don't understand our pain have to be IN pain to realize that maybe we are actually telling the truth. That in its own right is soo wrong on so many levels.


I've thought about heading up a march on Washington to get the Senate, Congress and Presidents attention. But I think that too would just go down in flames. I really am just frustrated with this whole idea that we are bad people that whine and dispair because we are in constant pain. It's sad huh?

But, then again....maybe a march is exactly what is called for here? Maybe that's the only way that anyone will listen. Anyway it was just a thought.

Hugssss all thanks for the thoughts.

Scarred
Posted 8/22/2009 10:16 PM (GMT 0)
I like the idea...especially for other CP'ers to know they are NOT alone and the non CP's who would read it.

I have a few ideas too "How to treat a patient" "what not to say to a person in pain" "Doctor's you wouldn't want to visit" lol...I think my ideas might get me in trouble. :-)
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