It is certainly posts like this one Ry and PA that make me count my blessings for my Doc, I think I will send him a thank you note this week for good measure!
Keah my Dad passed away in 98 from Lung CA that went undiagnosed or maybe I should say misdiagnosed for several years and he ran thru every known Doc and type searching out relief that I wish now I had paid far more attention to his complaints myself as I know he suffered needlessly for a long time. He had massive shoulder and upper back pain and they treated him for bursisitis,arthritis,pinched nerves,well you get the pic and in the end his cardio found the CA in a routine chest x-ray and it had eroded into the scapula and thus the pain in the areas of concern.
When he was sent to oncology it was far too late at that point to try much of anything but I recall taking him to the drugstore and him being embarrased by the ungodly huge bottle of nonother then darvocet! Yep he got something like 480 of them a month if you can imagine and he ate them like tums, He would have so much pain still I had seen him literally beat his shoulder on the brick wall of his patio and I would beg him to stop,all the time saying that pain from acute injury(beating the wall) was far easier to handle then the chronic and it helped him to forget the pain for awhile. How very sad for me now to know how much he went thru until we haulted all treatment by all Docs and turned him over to hospice,even though he only lived a few weeks after that he was NOT in any real pain thanks to them!
So yes alot of CA patients still do not get adequate pain relief in end stage and it seem the older the pateint the less they get for some reason.
Years ago there was a very brave and outspoken guy who advocated for CP and had a website for compassionate Docs and he himslef was a CPer,they site was a Godsend for many many CPPS for years and he didnt stop there! He spent money of his own and went out and lobbied congress and made his voice heard and he was not a bit afraid to make statemtns concerning the irrational thinking of Docs who refused to treat their pain patients adequately. He fought for years doing just this and then things started to happen to him and his wife and friends,things that shouldnt have been happening,arrests without probable cause,traffic stops,problems with the pharmacies,calls to his Docs,Social service visits to the kids schools,all kinds of tragic things that couldnt be explained but under it all everyone knew who he had P.Od and he finally had to close up shop and go under the table so to speak to be able to live without fear of his family suffering. This story is real and I knew him and had met him at a meeting here or there concerning PM and I know the things he was exposed to and accused of faslely.
That was as I said several years ago now and things have gotten better as now the numbers of folks actually doing the advocating and speaking out are far greater so it isnt as easy to push them under.
Ry the right Doc is out there for and PAlady and all those other folks being undertreated and yes it is difficult for us to stand up for ourselves as we dont want to look like drug seekers but it is the only way to make our lives more meaningful. Sometimes travel is necessary but with the changing regulations on prescribing schedule 2 meds this wont be such a hassle anylonger and the travel wont have to be made on a monthly basis now as it did in the past.
Dont give in and dont let them force you to live in pain and this especially holds true if you have no answers to what is causing this pain as you can see from my Dads story it is absolutely imparrative you find the right answers no matter what it takes.
Fight the insurance companies,the PPO's,HMO's,medicaid whomever to get the approvals needed to find answers. Write letters and send themt ot he Docs requesting whatever it is your being ingored about,a signature delivary costs very little more then regular mail and make copies! If you still get nowhere you have a basis to turn over to your attorney and maybe then he can get their attention and this isnt something you want to do without exhausting all of your resources first but at least you will know your lying the ground work to win if need be.
Do a search on any Docs you are going to see and their are web sites for good and bad Docs and those who have been reported for whatever or sanctioned,reprimended,suspended in any state etc. If the Docs is good word will travel much slower then if he is a bad one.
Good luck to all of you and sharing your good Doc is a great thing to do and one of the sure ways to know you have found one that cares.
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
If you stumble make it part of the dance!
Formerly Ruth Thomas