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Why Do They Ruin It For The REst OF Us!?!?!

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Posted 8/12/2009 3:06 AM (GMT 0)
I've been taking 240mg of Oxycontin a day for the last 3 years for a number of issues. I have cancerous tumors in my back, my stomach, and my brain. I have stage 3 disc degeneration, a steal pipe in my back, and several discs replaced. They can do radiation theropy because of all the metal in my body, so Pretty much they've been making my life as comfertable as possible until the end..... They told me i had 9 months 2 years ago, but lately i haven't been doing the best.  Last week when i went in for my doctors appointment, i was told they were bumping me down 40mg a day. The reason is because there has been a rise in abuse in my area. I think that it's rediculas that those of us who need these medications to function on a daily bases, are being punished for the actions of those who don't!!! I tried explaining to my doctor how much i needed the meds, and that I actually need a higher dosage, but all of the controversy over the alarming rate of new abuse cases in my area, has made it very difficault for the doctors to do their jobs right! and it's just not right!!! I don't know what to do. I think about letting it go, and calling it a good run. I'm at the end of my life now and i don't know how much fight i have left in me. I would like to enjoy the rest of my life with as little pain as possible, but it seems as if my voice is carried away with the wind when i voice my concerns to my doctor. Should i just give up???
Posted 8/12/2009 3:39 AM (GMT 0)
Ouch,

You have a lot going on there, and while I can certainly understand it from a chronic pain standpoint, seems to me you could use some soothing words from our friends in the depression forum.  If nothing else, don't dwell on the bad.  There is a certain level of depression in all of us, but by coming here and taking the time to type what we are feeling shows that we (and you included) are not giving up.  The response is amazingly understanding and if you give it a chance, you can see what a family it can be here. 

If you do not feel that your Dr. is listening and is more concerned with the issues of where you live than with how you live, I would suggest it is time to find a new Dr.  Do not give up, there are always other options. 

Best wishes for a better day tomorrow!

Posted 8/12/2009 4:41 AM (GMT 0)
Wow, you sure have a lot on your plate. Instead of deciding to "give up" because of the new rules at your PM doctors office - which do not seem to take into consideration situations like yours - maybe it is time to change PM doctors. Why not try and located someone who has experience with end-of-life diagnoses and believe in the hospice concept on making the patient comfortable when all other options have been exhausted. You might investigate which PM specialist you local hospice's are referring their patients too. At least you know that individual "should" have a compassionate use standard with the patients that have run out of surgical and other radical options.


Please do not give up. Finding a more compassionate doctor who understands what you are going through should help out. Obviously you are not rerouting or abusing your medications - so it sounds like it is time for a new doctor. Good luck.
Posted 8/12/2009 5:05 AM (GMT 0)
Hi Ouch!

And welcome to the Chronic Pain forum. I'm so sorry for the condition you are in both physically and with a doctor who is not treating you with the respect you deserve. You did not cause the problem yet you are the one being punished. IMHO, the doctor is a coward! It infuriates me when this happens to CP people through no fault of their own.

I do agree with Stella...time to find a new doc. Plus, if you are truly in an end of life situation then ask about Hospice care. You have to have a doctor certify that you have less than 6 months to live but that opens up door to whatever medication you need to remain comfortable.

If you don't get any results by asking around for a new doctor there are some folks you can try. You might try your local Crisis Hotline. They have resources at their fingertips. You can also try your state or federal legislator. Yep...they can push through red tape and get you the care you need. Also, if you have a minister/pastor you can ask for their advice. Also try to contact the American Cancer Society in your area. They should have some good resources. And finally...and I think a good options...call your local newspaper and tell them that You have a story for them! Putting a face on the pages of your community paper will have a huge impact on everyone in your area. Plus it gets the word out that most of the people who take oxycontin are responsible and have no issues with addiction. Plus they will see how your life is being affected unfairly by this problem.

That's all I can think of tonight. It's late and I'm fading fast...but one thing I know ~ Please do not give up. First reason is because the more people who cave in because of the goofballs wrecking it for the rest of us, then it will happen more and more. Next, set an example in your area to show the medical community you will not just go away quietly. You are not only fighting for yourself but for all of us pain patients who are standing all around you. Your actions will help keep our medications available to us.

And most of all...don't quit the fight because I, and others here care about you! Plus you have a family who I'm sure cares too. None of us want to see you in pain, but we sure don't want you to give up either. There is an answer but unfortunately you will have to advocate for yourself. Maybe with enough phone calls and emails you can get someone with some clout to come on board with you.

Oh, try your local American Pain Foundation. Here's a link to their website. I do hope this helps and please keep in touch. You can also email me if you'd like.
http://www.painfoundation.org/page.asp?file=page_resources.htm

Hugs,
Chutz
Posted 8/12/2009 5:51 AM (GMT 0)
Dear Ouch,
I also want to welcome you to the chronic pain forum. I have to echo what Chutz and Stella Marie have said. I know it takes energy, and probably energy you don't have, but since the pain medication has been helping you, it's IMHO negligent for a doctor to deprive you of it with all your health issues. I hope you can find the energy to look for another doctor, and even as Chutz suggests call your local paper and/or tv stations. They can even do a story without using your name, photographing you from behind, etc., but people only hear stories in the news about drug diversion and abuse. They don't hear enough of the effects of depriving chronic pain patients of medication which is in your case not only for comfort, but probably has helped extend your life by helping keep your pain (and therefore stress) lowered.

Also, you could file a complaint with your state medical board. Sometimes you can do this online. I know all these things take energy, though, and the best thing would probably be if you could find another doctor ASAP. And I agree contacting Hospice would be a good first step - even if you don't meet their criteria (which is good!) they might be able to help intervene with a doctor for you so you get adequate treatment.

And we are here for support whenever you want to post!

Again, welcome.

PaLady
Posted 8/12/2009 6:08 AM (GMT 0)
i dont know if i can add any more suggestions than have already been made, but i want you to know that you will be in my thoughts and prayers (if thats ok) and i hope you will get the relief you deserve the drs. creade says :First do no harm". well in my opinion undertreating a patients pain is doing harm. i dont care what the reason is. if you are truly at the end of your life, (and i hope your not) who CARES if you get addicted to your pain meds. i will never understand why drs. are bound by such stupid "standards" concerning pain meds. and as you said, why do we have to pay for the "sins" of others. anyway i hope you get what you need. and some compassion wouldnt hurt either! good luck and God bless. (hope thats ok, if not its well intentioned).
Posted 8/12/2009 7:35 AM (GMT 0)
Hello,

So sorry for your situation, and others here have givin you some great advice that I would defiently follow through if I where in your shoes. I just think its totally stupid of this doctor to do this to you in your situation, you have proof that your in desprate need of pain meds and it just isnt right in any way, shape, or form for this doctor to just cut you down that much. did this doctor just bump you down with no tapering?? Pain med addiction is on the rise EVERYWHERE, and getting help for these people is nearly impossible from what I've seen. I have a friend that I grew up with and we're best friends, BUT her ex-bf got her addicted to pain meds and now thats he's gone and she's seeing a guy that is wonderful (he's my cousin lol) and now she's pregnant with her 2nd child, and still addicted, and I have been helping her in everyway possible to get help, and their just isnt anything, I got her into counceling, but the state would NOT pay for inpatient, and that is what she really wanted. She knows she wont get better til she got some serious help, but yet they absoutly refused her. And this is the state of Washington social health services that refused her, the ones that should be helping her.

Sorry, I could go on about this forever but that's whole other situation and shouldn't be your problem, and it isnt!!! It isnt fair that the addicts cant get help, which leaves them doing their job of wearing doctor's out so they refuse to treat anyone cause they dont know who's who anymore. But even then, what your doctor did to you should be illegal some way, I would find another doctor and complain to everyone that will listen til that doctor realizes what he did. Just dont lay down and take it, you deserve much better treatment. I'm sure their has to be many options for end-of-life patients, is there a hospital that does cancer stuff, I know their's one in seattle by me, so I'm sure their's more, I would find one if you havent already and I know they should be able to treat you with pain mangement, I know they made my aunt comfortable at the end of her battle with lung cancer with help from this hospital. I really hope you find help, good luck and keep us posted.

-carmen
Posted 8/12/2009 10:12 PM (GMT 0)
I have to agree with the others. I would do some looking for a doctor that's geared towards end of life treatment and ask about hospice and/or palliative care. I would be frank and explain that you're in a terminal state and that you're basically looking for someone that's willing to focus on the palliative care aspect.

There's also a resource in most major cities called 211 Info that can also provide a lot of information on services in the area. I would suggest searching for that term and include your city & state. They can help with reference for medical, legal, etc. They were helpful to me when I was helping my father with his end of life issues.

Having a 9 month term and turning it into a 2 years so far, is a sign that you've not given up, and hopefully you won't. There are options out there. Sometimes they're not immediately visible, but there are people here who care and we're all good at brainstorming. You're welcome to post here at any time about anything. We're always here to listen and try to assist in any way that we can.
Posted 8/13/2009 8:14 PM (GMT 0)
I don't understand doctors and why they do what they do. I think it's just awful Ouch taking you from 240mg of Oxy to 40mg. I only take 5mg but right now that's enough for me and I have to beg sort of for that.

HARA
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