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PostPosted: Tue Aug 30, 2011 9:11 pm 
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Hi All,

As another year passes, I again consider what I could do to increase traffic and interest in the forum. i am grateful for the interests of everyone who is here; your efforts to bring people to this site will certainly be apprecatedl..

The people who use the forum regularly are using it perfectly, letting people in on your discussions about issues that the newcomers are likely not used to speaking openly about. Keep it up!


I am asking for feedback about the forum-- not for a critique over whether it is good or now, but about what it is missing. ANY change would be har to get used to, but we don't want to be passed over if something bigger or brighter comes along. Do we want social media connections? Whoul we ever have a "real" get together? Shou;d we expand to a larger addiction site, say like 'addict-ed.com'

Please think OUTSIDE of the box. Many new ideas will sound strange initially, but we might want to be ahead of whatever curves are coming. I am particulary interested if anyone has experience in setting up nonprofits, or if anyone with SEO experience would be willing to volunteer their services. But again, ANYTHING is on the table.

Please right to me at my personal e-mail, at drj@fdlpsych.com .

Thanks!

JJ


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PostPosted: Sun Nov 24, 2013 2:01 am 
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Hello, I'm new to your forum (and damn glad to be here). I am the Social Media Admin. for a large telecommunications company and can tell you a few things that work for us. I don't know if there are any laws prohibiting these suggestions, but anyhow...

We encourage sponsorships and accept advertisements that are pertinent. We encourage our technicians, senior management and customers to write articles of interest and feature them weekly. You may consider linking this forum with Twitter / Facebook, as many more people will find you in that vein. I've been on sub for approximately 3 years and just found you this evening. Also, I've noticed that everything is about "Suboxone", very little mention of Subutex, Buprex, Zubdolv, etc.. Regular bi-lines with the latest articles could create an environment that fosters a spirit of unity, and with the right people running social media, recovering addicts could become a force to be reckoned with (instead of frightened victims...sadly that's how many of us feel).

I think this forum is a brilliant pad from which to launch, and am delighted to find a place that answers real-life questions, and doesn't just give the generic definition of Suboxone as a substance to help opiate addicts through detox. It's so much more than that.

I had previously mentioned a Dr. Phil show during which the Nation's leading addiction specialist endorsed Suboxone! It was a break-through moment for recovering addicts, and (if permission were granted) would make a terrific link on this site. Anything that creates a sense of pride, empowers people and helps them to shed the shame is a stride forward. I'm sure you're aware that most sub users have been shamed, scolded or discriminated against in some fashion...it needs to stop. When the stigma associated with our treatment ends, doctors will truly be able to make a difference (e.g. capping patients at 100? WHY?)

You're headed in the right direction...just some food for thought. All The Best!


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PostPosted: Sat Jan 02, 2016 3:33 am 
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I know I'm replying to an old post, but I remember that Dr. Phil episode, and I jumped for joy when the addiction specialist told the angry wife of a sub patient, "you're withholding the one drug that will actually help him!" I have peripheral neuropathy, badly damaged discs, and fibromyalgia. Without sub, I'd be right back on Lortab / hydrocodone (which has no ceiling effect). How do we organize to stop the stigma? How to we prevent physicians from charging us $150+ to simply phone in a medication (I visit in person every 3 months). We're all so terrified of upsetting our doctors that no one speaks up. Why? Because doctors are limited to 100 sub patients. If we become troublesome, we'll be quickly replaced by a new patient (and the $350 start up fee they charge). How do we make this a situation where we visit (and pay) only 2-3 times annually -- perhaps after the first 6 months, and increase awareness? So many people are suffering and dying because (as things are now), it's seen as too expensive and carries a stigma. I've never been an Ocycottin or heroin user (not that I'm judging--we all had an affinity for opioids and the reasons matter not...we're all in the same boat together). I was a 42 year old woman who made a misguided attempt to manage my chronic pain with Lortabs so I could stay atop my marriage, family, home and a demanding career. I'd like to start a forum where we can stand up for ourselves and let congress know that we are all people trying to improve our lives...not junkies. We are professionals, parents, academics, spouses and otherwise upstanding, tax-paying citizens -- all carrying one unspeakable secret: we take subs. It seems as if the only regulations are to protect the doctors, and we as patients, have very few options. Whether you have chronic pain or a long history of opioid addiction, you need this medication. Once past a "probationary period" of 6-12 months, getting our sub should be as routine as it is for people to get their Vicodin, Percocet, etc. WE are trying to do the right thing and live decent lives. I shouldn't have to pay $165 per month (whether I visit my doctor or not) plus $105 for my medication. Something is fishy, and I believe they are counting on us to keep quiet out of shame. Well I'm not ashamed, shame is ridiculously expensive. It empties bank accounts and ends lives. I apologize for the ramble, but will we ever be able to bring this to light? If you've read this far, I thank you for your time, and appreciate any insight on this matter. Best Wishes


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PostPosted: Sat Jan 02, 2016 2:14 pm 
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I am with you, Violet! One of the reasons I am earning a masters in addiction studies is so I can advocate for us with a more authoritative voice.

I don't know how to involve myself in writing/advocating policy, although I suspect it means volunteering for many dull committees. :) But I will be a loud voice for us in whatever way I can.

I have already educated many of the students in my classes about how buprenorphine works. I've also railed against the idea of treatment programs kicking addicts out of treatment based on a dirty UA. I am polite, but passionate.

I see a couple/few areas that need to be immediately addressed. First, we need to develop materials for a nationwide suboxone support group that can be easily started by the doctor's offices who prescribe it. Or easily started by anyone else. This is necessary because many sub patients are required to go to meetings. If a 12 step group is the only game in town then that's where the sub patients have to go, even if the 12 step group is not progressive enough to recognize sub therapy as legitimate recovery.

Another task we have is to get the word out to the public and to our legislators that when people choose suboxone, they are choosing to be in recovery. And these same people need to know that we are not impaired by this medication. That is very important.

We also have to push for more treatment centers, whether they are outpatient or inpatient, to make harm reduction a goal of treatment. There are too many abstinence based treatment centers that turn away much of the addict population because they are not able to be abstinent. "We can only help them when they are ready for recovery!" That's what these treatment centers say. They are leaving too many addicts, particularly opiate addicts out in the cold with a high threshold for being in recovery. And their emphasis on "clean time" makes addicts constantly start over when they have a slip or relapse. We have heard from our members how demoralizing that can be!

That's all I can think of off the top of my head. One of the things we can do individually is to respond to articles on Medication Assisted Therapy, especially when the articles are wrong! But even when they're correct, comment and back up the writer. When another commenter is saying things that aren't true, respond to them and give them the correct information.

You're absolutely correct! We can't be ashamed! Especially those of us who have the ability to reach a larger audience or people that can help make a difference. They need to see that we are functioning at high levels and that the medication does not interfere with our ability to do our jobs, to obtain an education, etc.

I was doing some nannying for the son of a well educated couple last year. When I told them about starting grad school they asked what I would be studying. I told them and I told them why. I had worked for them for a year and a half. They fired me. Although they were somewhat torn up about it, not knowing if they were making the right decision or not. I sent them an email a couple weeks later telling them that I hoped they would do a better job the next time they came across someone on bupe. Because, I said, these people are your neighbor, your dentist, your landscaper, your accountant, your IT person, your coworker and your 3rd cousin twice removed. I told them that I knew they were good people and that I was counting on them to do better the next time they were confronted with a similar situation.

We know that there will be stories like this everywhere before people become educated about our medication. Someday it will be different. But it will require effort on our part!

Amy

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PostPosted: Tue Feb 09, 2016 4:38 am 
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Hi Amy. I could not agree with you more! Once my back became wrecked and I became addicted to painkillers, realized that was causing a problem on the job I started on suboxone in early 2007. I worked for a very large telecommunications company, had been there nearly 15 years with a good record. I made the mistake of letting my supervisor know when I started on the suboxone. Within a matter of weeks there were problems basically manufactured that cost me my job. I was a union employee, my Union did nothing to help other than tell me to accept a pittance of an offer at arbitration. Public awareness of Suboxone therapy needs to be increased desperately. I'm not 'just some junkie', I'm a chronic pain patient with severe back issues. I tried to do the right thing and it cost me a career. I was involved in a bad car accident this past September & it really exacerbated my back problems. Having been on suboxone for several years my new in pain management doctor asked about pain relief on subs, I was honest and said it was minimal. Ibuprofen helped but I was still in constant pain. So now I'm on Butrans with percocet for breakthrough pain. As I previously posted this new doctor seemed to not have a clue how to convert 8 mgs suboxone to Butrans and put me on the 10 micrograms per hour patch. After a week of pure hell in withdrawal, having called the doctor for help and being told increase the percocet one per day, which did NOTHING. I finally took matters in my own hands and put on a second Butrans patch. I wasn't looking to get high, I was simply looking for relief. I would much prefer not to have to take anything but with a bad back, ruptured discs, stenosis, scoliosis, severe arthritis what else am I supposed to do? When I called the Dr's office to inform them what I had done of course I was greeted with the shame of taking matters into my own hands. Tomorrow I find out how much trouble I may or may not be in with this doctor who obviously did not know what he was doing as far as how to convert from one drug to the other. My first question to him will be has he ever experienced withdrawal. Its no joke, it's not fun and it's not something I chose; it's just something that happened. I am not ashamed, nor will I accept being shamed for Who I am. I'm so sorry your employers fired you for your honesty pretty much the same as mine did. It completely changed my life and I now live on SSD as opposed to a relatively lucrative position in a very well known Corporation. I definitely agree with your thoughts on public awareness. Just wanted to share this with you; have a wonderful day.


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PostPosted: Tue Feb 09, 2016 4:43 am 
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Amy, I should have proof read my post better. After putting on that second Butrans patch within the hour I felt 90% better. Just thought I should include that, FYI. Blessings to you, Arneta


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