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PostPosted: Fri Feb 16, 2018 12:06 pm 
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Hi I am an addict. What follows is a cautionary tale and one to let anyone who might be faced with a similar situation know there is hope. I apologize in advance for the lengthy post.

In early 2007 I was in a minor car accident that caused a major neck injury. For 6 months I went to hundreds of chiropractic appointments, physical therapy appointments and I had a surgical procedure called a rhizotomy where they burn the nerve endings that are causing pain. It was a temporary fix. Nerve endings grow back, and the pain returned. Eventually, I was referred to a local pain management clinic to explore pain relief through medication. As a recovering addict with 11 years clean in 2007 I admitted my fear of relapse. The PA told me, “Just because you have a history of substance abuse does not mean you are condemned to a life of chronic pain. We can help you.”

I started an opiate pain relief plan and we built in strict accountability and extreme vigilance as guardrails to protect me from relapse. I didn’t become addicted to the opiates, but inevitably became physically dependent on them. Physical dependence and addiction are two very different and distinct phenomena associated with using opiates. What happens due to physical dependence is that eventually taking opiates ends up being less about managing pain and more about avoiding physical withdrawal symptoms. Within 3 years I had gone from a small dose of Vicodan to wearing Fentanyl patches on my shoulders. The pain of trying to avoid withdrawal became greater than the pain in my neck and I wanted off the meds.

In a last ditch effort to stop the chronic pain, I was referred to a surgeon. He was confident he could help and he replaced and fused three discs with hardware and screws at levels C3-C4, C4-C5, C5-C6. During a follow-up visit to the pain management clinic I asked to be taken off the pain meds. I wasn’t sure how it worked but they got me on them and I trusted that they could get me off them.
The plan to get off the opiates was to use a medication called Suboxone.

The process to get off opiates involved being put into a state of severe withdrawal under a physician’s supervision and then being given two small doses of Suboxone under my tongue. Within an hour I went from being intensely dope sick to feeling completely normal and ready to go back to work.
In hindsight, I reflect on how little information I had about this medicine, it’s side effects and especially about its difficulty to stop using it. I was told that it was a pain relieving alternative to opiates and that there were no long-term side effects. Starting in early 2011, I was prescribed the maximum recommended dose of 24 mg per day and I was on Suboxone for almost 7 years.

I might never have questioned the effectiveness or necessity of continuing to take Suboxone if it weren’t for a freak “accident” that happened in Aug. 2016. I’d been plagued by a sore throat for over a year by then and after an especially painful sore throat during a summer vacation, I woke up coughing and a small purple screw came out of my mouth. I knew immediately that it was a surgical screw, that it had come from the hardware in my neck and that it was the cause of the sore throat. Once everyone in the healthcare community was done freaking out and were satisfied that there were no immediate medical issues in the aftermath of the loose screw it occurred to me that Suboxone hadn’t done anything to relieve the sore throat pain. I started to wonder what it was doing to relieve any pain and if I really needed to be taking it. When asked about it, my Dr.’s agreed it would be easier to stay on it than to get off it and when pressed, my primary Dr. told me that due to its physical dependence issues, safely getting off Suboxone would require a medically supervised detox. Hearing that, it took two more years to strengthen my resolve to get off Suboxone no matter what it took. How little idea I had what it would take.

My pain management Dr. responded to my request to get off Suboxone by referring me to a therapist. While that felt like he was questioning my sanity, I really did need help to figure out the best way to get off Suboxone, and the therapist turned out to be my best resource and strongest ally in this effort. We learned that Suboxone is most commonly given to opiate addicts in rehab centers as a form of Medication Assisted Recovery. In this highly controversial recovery program, (of which I have no opinion) addicts are typically given 6-8 mg per day for less than a year and then are slowly weaned off it when the risk of relapse has diminished. Additionally, we learned that the withdrawal process is not considered as much a medical issue as an addiction issue. The safest and quickest option for getting off the medicine that I took as prescribed in order to get off the opiates that I took as prescribed was to check into a medically supervised drug treatment center. On Nov. 6th, 2017, I arrived at a well regarded treatment center to get off Suboxone. It was ironic and humbling to be in treatment with over 20 years clean by now. The lessons and blessings from that experience are their own story for another day.

During my 21 day stay in rehab, I underwent an 18-day taper program. I went from taking 24 mg per day and tapering to a lower dose every three days until I jumped after three days at 2 mg. I’ve since learned from posts on this forum just how ridiculously fast that taper protocol was, especially for someone who took Suboxone for seven years. The lesson learned is just how very sick I can get and still not die.

The withdrawal symptoms started getting bad in the treatment center at around Day 8 after dropping to 8 mg per day. They continued to get progressively worse for the next month. It started out feeling like I’d caught a bad cold but quickly morphed into feeling like I had the longest lasting cold and flu combination imaginable. It was horrible being sick, but in the early stages of w/d, the worst part was that I also couldn’t control my emotions, I couldn’t concentrate enough to read or write, and I couldn’t sleep for the endless loop of racing thoughts and relentless restless legs. My last 2 mg dose was on Thanksgiving Day, 2017, and I was discharged four days later. I truly believed the worst was over. Much to my dismay I was just starting the most severe physically ill part of withdrawal. Once home I became so weak that I could barely get out of bed, yet sleep was still elusive. Physical and emotional ailments crippled me, and it felt like every day was worse than the day before. Finally, 8 days after my last dose (Dec. 1) my husband took me to the ER. I was dehydrated and too weak to stand. I’d lost 13 lbs. I was given IV fluids and meds for the nausea, diarrhea, restless legs and sleep. After that I reached a turning point and for the next four weeks I worked hard at getting a little bit better every day. My first biggest accomplishment was getting out of bed and taking a shower, then a few days later I managed to walk around the block. It was an excruciatingly slow but steady recovery. Thankfully, I was able to take the time off work I needed to get through this ordeal (8 weeks) and on Jan. 2nd I was ready to go back.

I have been off bupe for 85 days and I give credit to my Higher Power and also to this forum. I spent many hours reading everyone's experience, strength and hope, taking comfort in knowing that I wasn't alone during the darkest of times. On the bright side I've heard people describe just how colorful and vibrant their lives feel post bupe. I am getting there today, feeling more happy, joyous and free and am very very grateful.


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PostPosted: Fri Feb 16, 2018 9:22 pm 
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I don’t have time to write a proper reply, but I’ll just say i feel your pain. I, too, went to a 21 day detox in 2013 to get off of bupe, and the place I went to also didn’t know what they were doing.
This quote really resonated with me “I also couldn’t control my emotions, I couldn’t concentrate enough to read or write, and I couldn’t sleep for the endless loop of racing thoughts and relentless restless legs”. I, too, lost over 10lbs, was dehydrated and had dangerously low blood pressure.
Millions of prescriptions have been written for Suboxone, and the medical community remains largely ignorant of the drug’s properties.
Withdrawal STARTS at 2mg!
I’m glad you’re doing better, and keep us posted on your progress.


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PostPosted: Fri Feb 16, 2018 9:24 pm 
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Thanks for sharing your story.

I'm in the middle of writing a post that I'll either do on my blog or for one of the other sites I write for. I am trying to describe what I see--- how interest in opioids fades over time. It doesn't always occur; if I had to estimate I'd say it happens about 2/3 of the time. And the time for it to happen varies, but it never happens in one year, and rarely after two. After 3-5 years on either buprenorphine or methadone, I see the interest in opioids fade. I've heard many descriptions, ranging from 'the thought of that opioid effect sickens me' to 'I'm so disgusted by that part of my life that I'll have NO problem leaving it behind'.

I've noted other things too- for example how doctors can make the medication more 'valuable' to the patient when it is withheld. I've had patients who couldn't stick to their prescribed dose, and their doctor left them running short month after month. Or maybe the doctor forced a taper on someone after one year or less. In those cases, buprenorphine never becomes 'uninteresting', and never loses it's attraction. But if I take one of those patients forced to take 12 mg by a different doctor, and give that person 24 mg per day and explain why their receptors were probably fully occupied by 16 mg-- the person stops running out early, and starts the process of forgetting about Suboxone.

With those things in mind, I think that some patients may want to consider tapering after a few years. If the process is too difficult, then wait a year and maybe try again. The challenge isn't stopping buprenorphine; the challenge is putting opioid tolerance back down to normal There are ways to do that almost painlessly, over a long time-- which is another post I hope to write soon! (maybe writing this will make me get moving on the things I've been putting off!)

But really.... the risk of staying on buprenorphine forever is much lower than the risk of taking a medication that lowers your cholesterol. Give that some thought. It's much, much safer than taking Coumadin!!! It's as safe as any medication for high blood pressure or asthma. And it is much safer than taking insulin for diabetes.

Really, the only risk from long-term buprenorphine is the risk of being left without a long-term doctor. If that is not an issue, then take the medication along with your multivitamin, and start to taper it when things are going well and you're motivated to work on something that will take some mental effort.

One last thought. I don't want to get too personal, so keep the question hypothetical, please. But let's say that it costs you $2500 per year to be on a buprenorphine medication-- $200 per month. Let's say that your son or daughter gets hooked on heroin, and after a few horrible years he/she goes through a month of rehab and comes out 'clean'. Would you want him/her on or off buprenorphine?

If you don't see the obvious answer, then you and I are coming from different planets. The only reliable thing I've seen after one-month rehabs is death.

So going forward, how long should your kid take it, if everything is going great? What if the person is typical, and has been off heroin for a month at other times, but always returned to using. How long would you want that person on buprenorphine?

I suppose I'd better join my wife to watch the Olympics instead of typing on the computer on a Friday night!


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PostPosted: Sun Feb 18, 2018 2:27 pm 
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I'm in the process of quitting myself. By myself. I didn't realize how much it actually covered pain. My entire boidy hurts but old injuries are the worst. I'm around 18 days without. Only hope it doesn't take months. So good to hear about light at the end. ! Thank you. !


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PostPosted: Mon Feb 19, 2018 12:07 pm 
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Lillyval, thank you for your reply and your encouragement. I tried hard not to imply that the treatment center didn’t know what they were doing. Maybe they did, maybe not, but I clearly didn’t know what I was doing when I agreed to get on Suboxone in order to get off the opiates and I was especially ignorant when I agreed to stay on it for so long at such a high dose. I truly didn’t know what to expect then or when I went to treatment. Knowing I wasn’t addicted to it, my best thinking about detox was maybe a 3 to 5 day taper and home in a week. Today I know that’s laughable, if it wasn’t so miserable. I guess I should have found this forum long before I did. You didn’t elaborate about where you are in your journey today, but I hope you’re doing well and based on the number of posts, I’ll venture to guess you’re helping many.

Suboxdoc, I appreciate the general tone of your reply. My post was personal so I’ll respond personally. I was in the category of never being interested in opiates for anything other than pain relief and in spite of being a recovering addict, I didn’t become “interested” in them or in Suboxone. I took them as prescribed. I can’t imagine what absolute hell it must be for those addicts who have to deal with the mental anguish of craving at the same time as getting through the hell of physical withdrawal. One would think that would be enough to say, “Never again.” Unfortunately, that’s not how the disease of addiction works.

What I posted regarding addicts taking Suboxone was what I learned firsthand in treatment. While I was there to get off bupe, many, many others were there to get on it. The nurse’s station was a gathering place for sharing all kinds of information. The medication assisted recovery protocol was as I posted above. A very small amount was being prescribed for up to a year.

I would, without a doubt, want my son or daughter to do whatever it takes to kick heroin and to not relapse or overdose. If that meant being on Suboxone then by all means, let me be the first to call the Dr. To assert otherwise is ludicrous. They should take it as long as necessary to have built a solid foundation of recovery as evidenced by becoming a productive, responsible member of society. For me, that meant for as long as it took to work the steps with a sponsor.

If on the other hand, addiction was not the issue, but pain management was, as was the case with me, I would strongly caution anyone, especially a loved one, against embarking on a long term opiate use program. If they did anyway I would especially counsel them to taper off the opiates and get it over with, without using Suboxone.

You say “really….but really” when stating there are no long term effects of buprenorphine. I’m not sure the verdict is really in on that yet. I can tell you first hand that being overprescribed 24 mg when my ceiling was probably less than 16 mg has damaged my kidneys. My brain chemistry has been altered and no one can definitively tell me how long it will take to get back to normal, or if it ever will. I was repeatedly warned about the effects of PAWS, post-acute withdrawal syndrome, and was told that my mental health could be impacted for a very long time. Maybe “long term effect” means forever or maybe it means 3 years or maybe it means 1 year. To say there are NO long term effects is irresponsible at best and malpractice at its worst.

AWThomasWestVirginia, hang in there. One of the ironies of long term opiate use is that it becomes a hyperalegisic. In other words, it creates an abnormally heightened sensitivity to pain and makes our pain feel worse than it actually is. Also body aches and pains are a common symptom of withdrawal and they got better for me over time. Exercise and Excedrin were my best pain medicines during detox.

This Wednesday, Feb. 21st I will have 90 days Suboxone free. My husband just commented yesterday how much my sense of humor has improved. Little by little, one day at a time, we do recover.


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PostPosted: Sun Feb 25, 2018 2:00 pm 
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OMG....that's just an awful story, I sincerely admire you for going through that. In hindsight, what is worse, the mental or the physical issues?

I am a PM patient looking for information. My DR told me to look at the good and the bad of this drug. He is not a sub dr so he told me to look at all sides of sub as a pain med.....especially since one day I might need more surgery. Thank you for posting your story.

I hope every day gets better for you....that's a lot to go through. Wow.


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PostPosted: Mon Feb 26, 2018 4:02 am 
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Ktrippsfsd wrote:
You say “really….but really” when stating there are no long term effects of buprenorphine. I’m not sure the verdict is really in on that yet. I can tell you first hand that being overprescribed 24 mg when my ceiling was probably less than 16 mg has damaged my kidneys. My brain chemistry has been altered and no one can definitively tell me how long it will take to get back to normal, or if it ever will. I was repeatedly warned about the effects of PAWS, post-acute withdrawal syndrome, and was told that my mental health could be impacted for a very long time. Maybe “long term effect” means forever or maybe it means 3 years or maybe it means 1 year. To say there are NO long term effects is irresponsible at best and malpractice at its worst.



Suboxdoc is not just some doctor who sticks around here because he doesn't have better things to do. He is the person who created this forum along with his blog, the TalkZone. He provides us with the latest and best scientifically based evidence regarding suboxone and other forms of buprenorphine. He is a recovered addict and a practicing psychiatrist who prescribes suboxone to opioid addicts. I'm sure he wouldn't come into your house and call you irresponsible (especially for sharing well-known scientific fact), or imply that you're a criminal.

The truth is that our forum is not made for you or those who are simply dependent on opioids. For us having access to suboxone is a life or death proposition.

I appreciate that you are telling us your story, but please don't come here and be impolite to our doctor, who is doing his best to respond to your extremely long post. His evidence isn't anecdotal or supposition. Buprenorphine has been proven safe to use since 1978 with few side effects.

Other than that, you are welcome here. Most people here are addicts and that is who the forum is geared to. We don't mind if others share their stories though!

Thank you in advance for accepting our guidelines and I wish you success with detoxing the rest of the way.

Amy

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PostPosted: Mon Feb 26, 2018 5:07 pm 
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Tukabirdy, congratulations on finding this Forum and doing your due diligence before making a decision about dealing with chronic pain management using Suboxone. I wish I'd done more upfront research in 2011. sigh...

In hindsight I can definitely say the physical aspects of withdrawal were much worse for me than any of the mental/emotional effects have been to date. Bear in mind, it's only been 95 days since my last dose and I've been warned to expect depression, anxiety, lethargy, mood swings, and insomnia as part of the post acute withdrawal symptoms, commonly known as PAWS. These issues can last long past the time that the last physical symptoms are gone and I'm experiencing them all to some degree or another.

The irony is that I anticipated the physical withdrawal to be somewhat of a piece of cake and I worried much more about the emotional impact before I started to detox. I've never been one to focus much on improving my physical fitness and sort of took my health for granted. For example, I just quit smoking a little more than a year ago. On the other hand, I've carefully nurtured my mental health over the years by building a strong foundation of 12 Step recovery along with a growing faith that has resulted in an emotional resilience that has served me well during significant challenges. Those things very likely impacted my physical and emotional experiences when quitting Suboxone. I suspect everyone's experiences are somewhat different based on their level of physical or emotional health prior to detoxing, but I hope I provided some insight to your question.

Thank you for your support and best wishes with whatever you choose to do.


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PostPosted: Tue Feb 27, 2018 1:22 pm 
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Hello Ktrippsfsd,

I have mentioned this before of this form. People who do not feel like Suboxone helps them or just doesn't like the way they feel on Suboxone, are Generally the most SUCESSFULL getting off of it and staying off of it.

That being said, The longer you are off of it the better you will feel. You have many days now behing you, so Congrats on That. What an accomplishment!. I was off of Suboxone for a year but I did decide to get back on it at a low dose. It helps me with Depression and addiction cravings. But i never knew that until i was off of it for a while and i could reflect on it.

Any thoughts on what to do with your chronic back pain? Just wondering what you will use for that? Good luck to you!


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PostPosted: Thu Mar 01, 2018 12:41 pm 
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Hi Amy - Work in Progress. I am glad that this forum exists and that it is moderated. Thank you. I have found a ton of helpful information here from people who openly and honestly share their first hand, real time experience with using and trying to stop using Suboxone. I am also grateful there is a professional like Suboxdoc to reply to people's questions or requests for advice when that is needed. I was quite surprised to see a reply to my post from someone as busy as he must be. Based on a couple of his comments, I might have assumed the doc was actually referring to an entirely different post especially since I didn't request advice. One example of my confusion is where he said, "With those things in mind, I think that some patients may want to consider tapering after a few years. If the process is too difficult, then wait a year and maybe try again. While that is no doubt great advice, I couldn't find the relevance to my post. I was long past the point of tapering by the time I wrote my post and was simply relating my experience that did not include a year's long taper.

Another example of my confusion about whether Suboxdoc was responding to the correct post was this comment after he gave a hypothetical situation about a kid on drugs..."If you don't see the obvious answer, then you and I are coming from different planets. The only reliable thing I've seen after one-month rehabs is death." While I thought it was a bit harsh, even a tad bit impolite, I certainly didn't take offense. If you want to help me see how that relates to my post, I'd be delighted.
On the other hand, regarding the long term effects of Suboxone, I certainly meant no disrespect to his opinion as I am sure he meant to not diminish my personal experience. I was on Suboxone for 7 years and can personally attest to the long term effects first hand. I don’t recall reading about his first hand experience.

Finally, to your point "Most people here are addicts and that is who the forum is geared to. We don't mind if others share their stories though!" I am going to assume that you accidently overlooked the first five words of my post because you wouldn’t have discounted that important part of my story. Just to clarify, I am a grateful recovering addict with 20 years clean thanks to the fellowship of Narcotics Anonymous and by the grace of my Higher Power. The reason I choose to share my lengthy experience, strength and hope on this forum is that it might help someone as I have been helped. I hope that is the primary purpose for this forum.


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PostPosted: Thu Mar 01, 2018 1:11 pm 
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Hi raudy1975, I couldn't agree more that one's feelings about using Suboxone will have a huge impact on their ability to successfully get off it. The biggest regret of my story is that I wish I had been more informed about how hard it was to stop using it and I certainly wish I knew more before I stayed on it for so long. I take full responsibility for not doing more research. I am always encouraged to hear someone who knows say that it keeps getting better the longer I'm off it. That gives me a great deal of hope. I admire your willingness to spend time reflecting on what's best for you and especially for not implying that it's what's best for everyone.

As for the chronic pain question it was my neck that was injured and operated on. I didn't elaborate on it in my original post, but the surgery was largely successful in resolving the chronic pain I was experiencing. I couldn't really gauge the pain very accurately because I was on regular opiates pre-op and I went on Suboxone post-op. Before the surgery I was in pain whether or not I breathed or blinked. Post-op, I had pain, but it wasn't chronic. If I turned my head for too long, or took a long car ride or went boating in rough water, I'd have neck pain, even while on Suboxone. My go to pain medication is Excedrin and it is imperative that I get a deep tissue neck and shoulder massage at least once a month or I'll gradually lose my mobility and the pain increases. Since I've been off Suboxone, I don't feel an increase or a decrease in my neck pain. The pain is manageable but I don't go on roller coasters, go sky diving, water skiing or ride horses. I enjoy those things vicariously through my grandkids, kids and husband. As I've stated before, life today feels more colorful and vibrant than it has for 10 years and several people have commented about how much my sense of humor has improved and how I act much more animated and alive. I feel it and they see it.

Thank you for your encouragement and good luck to you as well!!


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PostPosted: Thu Mar 01, 2018 2:11 pm 
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Quote by Ktripps:

"I started an opiate pain relief plan and we built in strict accountability and extreme vigilance as guardrails to protect me from relapse. I didn’t become addicted to the opiates, but inevitably became physically dependent on them. Physical dependence and addiction are two very different and distinct phenomena associated with using opiates. What happens due to physical dependence is that eventually taking opiates ends up being less about managing pain and more about avoiding physical withdrawal symptoms. Within 3 years I had gone from a small dose of Vicodan to wearing Fentanyl patches on my shoulders. The pain of trying to avoid withdrawal became greater than the pain in my neck and I wanted off the meds."

Quote by Ktripps:

"Suboxdoc, I appreciate the general tone of your reply. My post was personal so I’ll respond personally. I was in the category of never being interested in opiates for anything other than pain relief and in spite of being a recovering addict, I didn’t become “interested” in them or in Suboxone. I took them as prescribed. I can’t imagine what absolute hell it must be for those addicts who have to deal with the mental anguish of craving at the same time as getting through the hell of physical withdrawal."

Ktripps, this is how you described your relationship with opioids. You describe being dependent, not addicted. These are your words. I'm sincerely glad for you that you have been in recovery from an addiction to a substance that you haven't disclosed. Anyone working on their recovery has my admiration. However, you mentioned more than once that you are not addicted to opioids, but are merely dependent on them. This forum is primarily for those addicted to opioids. Sorry if there was any confusion about that.

Dr. Junig often brings up larger themes when answering posts. He is not just responding to you, but to any people who might be reading this thread. Just as you read many thread's here to help you through the discomfort of withdrawal, many others will read yours. Dr. Junig hasn't been rude. He can be blunt. When you post here on his forum, you may have a response from him. You say that you meant no disrespect to his opinion when you implied that he was irresponsible and possibly engaging in malpractice. But when you are a guest in someone's home, it is not usual to say insulting things to them.

You say that you were on suboxone for 7 years and that you don't recall hearing about his first hand experience. (That's not snarky at all!) Well, his story is here:

mystory.php

He is an addict and his story is one of struggling with addiction for years. He has been treating patients with buprenorphine since around 2008. He has passed his boards and is now Board Certified in Addiction Medicine. He reads the research, he has years of experience with treating addiction with buprenorphine. He has seen it all.

In any case, if we didn't just follow along with the details of your story, it's because we have to be cognizant of some larger issues. We have to recognize the impact that a person's story has on potential readers. I hope more people respond to your specific story.

Amy

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