Playing Doctor is a Deadly Game

When my husband and I first started out on this journey with our son, we didn’t know much about addiction. But, we did know that people could die from it, and that was enough to scare us half to death. We couldn’t afford to be complacent so we jumped into action. We had a lot to learn in a short amount of time.

There’s a saying that a worried mother does better research than the FBI. Well, that was certainly the case here. I left no stone unturned searching for information about addiction. My experience in preparing and writing research papers really came in handy because I knew the value in finding reputable sources. I could also easily identify writings that were based on personal opinion only, not on evidence. There is a lot of that out there, by the way!

I also talked to people in recovery who took the time to share their experience, strength and hope with me. I have nothing but love and respect for each and every one of them for what they taught me and the care they showed in my time of need. Unfortunately, though, many of them were anti-methadone (most people are because we only hear the bad stuff – this needs to change) and this, sadly, made me anti-methadone, too, for a little while. I was easily influenced because I hadn’t researched methadone at that point in time. They had more experience so if they said methadone was not a good thing, who was I to argue? That is why when our son first started talking about getting on the waiting list for methadone, I turned my nose up at the idea but, thankfully, he put his name on the list anyway.

To prepare for our son to be on methadone, I started doing research on it. I discovered that the consensus from the leaders in health (World Health Organization, for example) is that medications like methadone and suboxone are very effective in the treatment of opioid addiction, especially when combined with other therapies. With this newfound knowledge, I was so glad that my son was on the waiting list for methadone. I prayed the call to start the program would come before it was too late.

The call finally came fifteen months ago, and his whole life changed thanks to methadone. He got healthy physically, mentally and emotionally. He is independent and self-sufficient. He is a successful full-time college student. He is a contributing member of the household. He is a taxpayer. He is everything that a person his age should be. We have our son back. We are blessed.

After being on methadone for ten successful months, our son decided that he wanted to try to slowly taper off of it. We were nervous about this because he was doing so well on the medications and we were VERY proud of him. He was and is very smart about his recovery and loves having his life back so that helped to put our minds at ease about the taper and to trust in the process.

His taper has been very successful so far. There was only one time where he had to ask to go back up and stay at the previous level a little bit longer. We told him that there is no shame in having to go back up in dosage or in staying on methadone long-term, for that matter. He knows that we are proud and supportive of him no matter what. There is no stigma, judgement or pressure in our house....just two proud parents who are so grateful to have their son back.

I am writing this today because I do not want another family to turn their nose up like we did at the very treatment that just may save their loved one. Let your loved ones choose the path that is right for them, and be supportive and proud of him/her for doing so. This world is not kind to people who struggle with addiction and it is not easy to stay in recovery regardless of the path you’re on so family support is crucial.  Look at your child on medications with pride, not disappointment or disgust.

We should always follow the advice of medical experts on the treatment of any disease and be open to “whatever works” for each person. It is their life after all! There are far too many “doctors” out there when it comes to addiction and it is a deadly game they are playing. Playing doctor is a fun game for kids, but it is not so fun for adults in the real world when lives are at stake. It is a fact that addiction kills many people; most of whom couldn’t get the proper level of help, wouldn’t reach out for help because of stigma, or who felt forced to end their treatment too soon. That is sad.

The reality is that recovering from the disease of addiction no more qualifies one to provide medical advice on the disease than recovering from heart disease qualifies one to provide medical advice on that disease. If you had a serious disease, would you want to be treated by a medical professional trained in the disease or someone who has recovered from it but has no medical training? People in recovery from diseases have an important place in the continuum of care in the role of after-care support, not treatment provider. 

I am quite sure that my views, which are based on scientific evidence, do not make me popular with some people in the recovery community and I am okay with that. What I am not okay with is people dying while we try to fit them into a box when it comes to their recovery. Our knowledge of addiction has changed in the last 80 years but our treatment and recovery programs have not kept pace. We would not accept this for any other illness and I personally will not accept it for addiction either. I will make waves, tick people off, and continue to fight to have addiction treated like any other serious health issue because lives depend on it. I hope that you will care enough to get informed, too. Did you know that addiction-related deaths are decreased by 50% with methadone and suboxone? These medications are effective treatments for this deadly disease. It is time to end the stigma!

My friend, Ronnie, and I have also created a Facebook group called Take it to the MAT for people in PEI (and elsewhere) on medication assisted treatments (MAT) and their families.  It is also for people who are considering this option and want some reliable information.  Please join us if you meet the criteria. We’d love to support and empower you and your loved one in reaching and maintaining the beautiful gift of recovery.

Sincerely,

Rose

http://shadowsinpei.blogspot.ca/2015/01/playing-doctor-is-deadly-game.html

Please click HERE to watch an informative video featuring Michael P. Botticelli, Acting Director of the White House Office of National Drug Control Policy (ONDCP) and Dr. Melinda Campopiano, Medical Officer for the Center for Substance Abuse Treatment at SAMHSA and Board Certified Family Medicine Physician who discuss the benefits of medication assisted treatment at the 12:00 minute mark.

We Need YOU!

We Need YOU!

By: Rose Barbour

We are in the midst of an epidemic, and things need to change

It will take a big movement so we need you to engage

You can help by getting informed and spreading the word

People are dying by the thousands, haven’t you heard?

Engaging can be as simple as sharing the stories you see

From brave families dealing with addiction, trying to educate you and me

Don’t scroll by with indifference and ignore their great pain

Read the story, feel their words, and share it again.

It takes courage to tell your story despite the stigma and shame

Knowing that some people will look at you as the person to blame

But what choice do we have when so many are dying?

The stakes are too high, we can never stop trying.

No one thinks it will happen to them, their kids are doing great

They’ve loved them and talked to them so they should be safe

It is a shock when you realize that addiction doesn’t care

It takes all that you believed to be true and turns it into a nightmare.

Great changes can only happen when good people care enough

To take a stand for something even though it can be tough

You see, today it is me that hurts and tomorrow it could be you

Don’t wait until it happens to find out what I’m saying is true.

We need those who've been affected and compassionate people like you

To take a stand together because it is the right thing to do

We can take back our communities by helping people to get well

Or you can accept the status quo and pray that you don’t face the same hell.

Written by: Rose Barbour on behalf of all advocates working hard every day to help those struggling with addiction and their families. Please join us in trying to stop the spread of this epidemic. A great place to start is by sharing this message to help us to educate. Thank you!
http://shadowsinpei.blogspot.ca/2015/01/we-need-you.html

Anniversary: Turning a negative into a positive

On January 1^st, my blog will be two years old. The response to it was more than I ever could have imagined. Since I started it in 2013, it has been visited 181,000 times! That is 181,000 opportunities to bring comfort to individuals and families struggling with addiction and to educate those who are looking for more information on the disease. It just goes to show the power we ALL have within us to make a difference when we set our minds to it.

I was also not expecting to develop a following from all over the world. The majority of my visitors come from Canada, USA, Ukraine, France, Germany, United Kingdom, Russia, Turkey, Moldova and China but they have also come from Belgium, Czech Republic, India, Poland, and Ireland. Sadly, it goes to show that addiction is hurting people worldwide.

Anyone who knows me personally knows that I am an introvert by nature who puts my head down and does what needs to be done without fanfare. However, it warms my heart to know that I am bringing comfort to so many. It wasn’t that long ago that Mike and I felt very much alone in our journey. I would’ve loved to have a blog to go to where I could read about other people’s experiences and know that we were not alone. I am happy to be a resource like that today for other people on this journey. I thank God for giving me the ability to express myself in writing.

I recently received a touching email (below) that captures perfectly what I’d always hoped my blog would do for people who are hurting.  

You don't know me and I don't know you but somehow about a year and a half ago I was at my wits end. My loved one was in active addiction and I was online trying to find some guidance to deal with what this was doing to me personally. I stumbled upon something you had written and I cried as I read. There was someone out there and real that knew exactly how I felt! I began following all your inspirational posts! This morning I read your Christmas post and I realized I had to say thank you to you! My loved one has found his way to asking for help and actually getting on the methadone program! It has been about 4 years since I realized he was struggling with addiction and since he made the first promise to quit! It has been a very long road to say the least! And I am fully aware this too may not be the end of this road but this morning singing in the kitchen baking with my children and my loved one actually participating! I am hopeful! I wish much happiness and joy to you and yours! And I will never be able to thank you enough for all the rough patches you unknowingly got me through! Thank you!

In addition to my blogging, I keep very busy with my other advocacy and support work, which includes my daily postings (365 days per year). I will continue to work hard to raise awareness, build compassion, educate and advocate for more services until such time that addiction is treated like any other serious illness.  A few of my highlights from 2014 include:

·        Joining the Province’s Mental Health and Addictions Advisory Council where I share my experience and knowledge as we work to develop long-term strategies for PEI.

·        Co-founding the 3 C’s Family Support Group with Ronnie Power in order to provide more support to family members of those struggling with addiction.

·        Being an advisor and volunteer for the Reach Foundation, which supports youth in recovery and their families.

·        Co-hosting an event for Chris Cull who rode his bike across Canada to raise awareness about the prescription drug epidemic while filming footage for a documentary he is working on.

·        Becoming a featured blogger on a popular addiction website with over 20,000 members.

I’ve also been blessed with many other opportunities to help others through writing, music, video, media and public speaking. I never wanted to have anything to do with addiction but, unfortunately, we don’t get to choose what our journey in life will be. However, we do get to choose how we handle our challenges. I chose to turn our family’s experience into something good by being a positive voice for those struggling with addiction and their families and I have no regrets. With that in mind, I look forward to seeing what 2015 brings.

I saved the best to last. The biggest highlight of my year and the greatest gift of all in 2014 was my son’s recovery, which is now 15 months in length. All three of our kids are healthy and happy and we are so grateful. We want for nothing except to have other families experience this joy as well.

There is still a lot to be done to ensure that addiction is treated like any other serious illness but together we will get there. Please continue to read and share my posts so that the people who need to see them (which is everybody!) will.

Thank you for being part of my family’s journey. Sending you many warm wishes for a healthy and happy 2015!

Sincerely,

Rose

My Methadone Story by Elizabeth A. Clark

This is a guest post by Elizabeth A. Clark, a lady in long-term recovery on methadone.  She is sharing her story in the hopes of educating about medication assisted treatment and to try to break down the unfair stigma attached to it. We are in the midst of an epidemic that is killing thousands of people each year. We can help by getting educated on ALL the available treatment options and by supporting whatever works for each individual. Let the STIGMA stop with you!

Elizabeth’s story

In active addiction, I was neither unique nor remarkable. I experimented lightly with alcohol and pot in high school. After graduation, I began using pharmaceuticals and eventually found myself addicted to Dilaudid. As my use increased, I became involved in ever increasing levels of crime and was soon arrested for this.

I was convicted and court mandated into rehab where I was detoxed off Dilaudid, counseled and went to classes and meetings. I was released after 30 days with no clue how to recover and maintain recovery. I really didn't want to stop using Dilaudid. If anything, without it my life was just more painful. I didn't want to give up the only thing that ever made me feel normal and good, but I also didn't want to go to prison for breaking the law.

At meetings, many of my fellow AA/NA members were still using and drinking, which meant that I couldn't even find sober friends at a 12 step meeting. Since I had let go of my old friends, I became isolated, lonely and miserable. I "white knuckled" abstinence as long as I could stand it. Finally, I told my poor mother that I hoped God would grant her the serenity to accept the fact that I was going back out to rejoin my old friends. Obviously, that did not work out well. I was soon re-addicted and breaking the law. Mom gave me the option of either moving out or going back to rehab. I chose rehab.

I spit out and injected all the Dilaudids used for detox and left this time with a bad attitude and a bigger habit than I had when I went in. I continued to use after this. I was very depressed and hopeless. Because I was lousy at crime, I was arrested again in no time. I went back to rehab again as I awaited my court date. This time the judge mandated me to a program over a thousand miles from home. I went to a 12 step abstinence based program. I was more appreciative of the precarious position I had gotten myself into, so I gave it my very best effort. I abstained, made friends, had sponsors, sponsored people, led meetings, did my inventory, went to sober activities, worked, and lived on my own. In spite of all this, something was still missing and I was miserable. I lost my sobriety after 9 1/2 months, and was addicted to Dilaudid again within a couple weeks.

During this period of active addiction, I met people who were on methadone maintenance treatment (MMT). After talking to them, I decided that if I was incapable of giving up opiate addiction, I'd be much better off taking something that was legal. I knew MMT was a serious step, but I was desperate at this point. I got on the program in 1981. I drank my dose daily, got counseling, worked full time, met my first husband, went back to college at night, got married and slowly tapered off methadone after about two years.

I felt great after tapering, but within a week, the devil brought an old friend to my door at 1:00 a.m. When I saw the friend's constricted pupils and her state of relaxation and normalcy, I felt cravings like I'd never before experienced. I knew in my heart that a relapse was rapidly approaching so I decided to get back in MMT before it happened. I have remained on methadone since that time.

I was on methadone and my life was better, but because I was so very much indoctrinated in 12 step ideology, I still viewed myself as a hopeless addict who couldn't make it without a replacement drug.

At this time I went to a low dose clinic and because my dose was much too low, I began taking Valium with it in order to enhance its strength. Over time, this grew into one of the worst periods of my life. Valium led to Xanax, which led to losing most of what was dear to me. I eventually elevated my dose, but because of my abuse of methadone and dual addiction to Valium/Xanax, I had no idea whether or not it was a stable dose for me. Methadone combined with Xanax became my drug of choice.

I lost my job, marriage, home, car, phone, cable TV and anything resembling a normal life. I depleted my bank account and ruined my credit. I was spending all my time with my new boyfriend, who was a methadone abuser. I was getting no counseling and faking negative urinalyses. I had no positive friends and no support from anyone but my mother, who was many miles away and not totally aware of my downward spiral. I was a functioning addict who worked while my boyfriend, who later became my second husband, stayed home and sold Xanax and methadone. We were eking our way through life in poverty and misery, high 2/3 of the time and dope sick the other 1/3. I knew I needed to make some drastic changes but was so down and out that I didn't know where to begin. I also knew that I could never have a better life if my husband and I stayed together. I loved him, but it was killing me.

Sometimes a tragedy can lead to redemption. On April 5, 2004, my husband went to sleep and did not awaken. In the period immediately following his death, I was all alone and still taking Xanax along with my methadone. For the first time in a long time, I was afraid. I realized just how vulnerable I was when all alone and intoxicated. I was scared of what might happen if I had a seizure from Xanax withdrawal while alone. I had no job, car, phone or family in the area. What would I do if I ever feared for my life, since I had no phone?

With the death of my husband, there were no longer any ties keeping me where I was at. I packed a few boxes and suitcases, gave away or abandoned the rest of my belongings and rode a Greyhound bus back home. I was unwilling to cause any more pain in my elderly Mom's life, so I took my last Xanax on that bus. I was finally at a point where I really wanted to end all the drama and danger of a life of poverty and misery that revolved around drug abuse. I wanted stability, productivity, health, enrichment, and positive relationships with family and friends. I wanted to prove myself as an honest and trustworthy person. I wanted redemption and a fresh start. I also knew it was impossible to have these things while engaging in drug abuse.

At this point in my life, I still believed the things I was taught by 12 step programs. I didn't think sobriety was possible while I was still on methadone. However, I knew a better life was possible if I took my methadone properly and abused no other drugs. After 23 years of MMT, I felt as if I had "slipped through the cracks" at the clinic and was a loser because I was still on methadone. I had much to learn.

I have had a series of good counselors at my current clinic, but the greatest aid to my recovery came from membership and participation in Facebook methadone support groups. In them I found other long term MMT patients, some on methadone even longer than my 33 years. I met and developed close relationships with many of the group members. I know I can rely on and give support to all of them.

The most important thing I learned from the groups was that being on methadone does not disqualify me for sobriety. I simply take it as a maintenance medication in order to lead a normal life and avoid relapse. I learned to stop using stigmatizing language such as "clean" or "dirty" to describe urinalysis results, "addict" instead of person with a substance use disorder, "detox" instead of taper, and derogatory terms like "liquid handcuffs" and "junkie." I learned that abstinence is not possible or even recommended for some people and it is ok for me to stay on methadone for the rest of my life if I want to do that.

I want all people addicted to opiates and their families to be aware that methadone is a good option for people who repeatedly fail at abstinence. I want them to know that MMT can work for anyone who wants to recover and can greatly reduce the harm involved in the drug abusing lifestyle while they are deciding. I spent many years in MMT before I chose recovery and now have over ten years of sobriety. I want parents to stop having to bury their children from overdoses after they have been released from abstinence based rehabs with low tolerances and unprepared to deal with life without medication. I want people to stop being afraid of methadone. I want them to know that the methadone myths are untrue. I never again want to hear methadone called "meth." This confuses ignorant people, causing some to think we receive doses of methamphetamine at a methadone clinic.

I'd love to see an end to the battle between NA and people on MMT. I want people to know that there are different ways of treating addiction for different individuals and sometimes MMT works when NA fails. I want people to accept methadone as a valid treatment. It reduces the incidence of future crime and allows people to be better parents. I want people to view methadone in the same way that they view insulin dependence, dialysis and the taking of hormones, blood pressure, cholesterol and mental health meds. I never want anyone to not be hired or lose a job because they are on MMT.

This sounds like a tall order, but I believe that most of the things I want are possible if we continue to advocate and if people who are thriving while in methadone are willing to "come out of the methadone closet" and stand as examples of what is possible when a formerly hopeless addict decides to work hard and achieve sobriety through MMT. I hope that sharing my story will help in some small way to tear down the stigma by showing what can be accomplished by one person in recovery on methadone.

Expert opinions on Methadone from a few of the leaders in health:

World Health Organization: “New WHO guidelines confirm that, even after 40 years, substitution therapies such as methadone are still the most promising method of reducing drug dependence.” http://www.who.int/bulletin/volumes/86/3/08-010308/en/

Centre for Addiction and Mental Health: “Methadone maintenance is a long-term treatment. Length of treatment varies, from a year or two to 20 years or more. This prolonged treatment with proper doses of methadone is medically safe and is one of the most effective treatments currently available for opioid addiction.”  http://www.camh.ca/en/hospital/health_information/a_z_mental_health_and_addiction_information/methadone/Pages/methadone_dyk.aspx

Center for Disease Control: “Methadone maintenance is the most effective treatment for opiate addiction.”  http://www.cdc.gov/idu/facts/MethadoneFin.pdf

Merry Christmas

On this Christmas Eve I am feeling so much joy that it makes me teary-eyed. I am walking around singing Christmas carols and enjoying the true spirit of the season. My mind is free of worry and my heart is full of happiness because all three of our kids are healthy this Christmas. We want for nothing. We have everything. I don’t know what tomorrow will bring but that’s okay. All I have is right now and we are feeling blessed today…..very blessed.

If I had some type of magic wand that I could wave I would give this gift of peace and joy to you as well, but I don’t. I know that there are so many hurting hearts out there and it weighs heavily on me. I had one for years and there was no singing of carols or feelings of joy at Christmas time….there was just existing and trying to make it through the day with a smile. I understand how you feel.

Without that magic wand, all I can offer you this Christmas is my love and support whether you are the individual struggling with addiction or the person who loves someone who is. I can also give you my promise that I will not leave you behind. Like any good soldier in battle (and this is a battle), I will stay right beside you and continue to fight for more services, raise awareness, build compassion, and educate so that every individual and family has an opportunity to get well. I KNOW that recovery is possible for each and every person. There are no hopeless cases. Never give up! Keep your hope alive.

Merry Christmas to all the wonderful visitors to this blog, and many warm wishes for a Healthy and Happy New Year.

Sincerely,

Rose

A True Champion: Dr. Leo Killorn

If you live in PEI and have any experience with addiction, you most likely recognize the name Dr. Leo Killorn, which often comes up in conversations around treatment.  He ran the Alcohol and Drug Treatment Institute in Charlottetown. As a medical doctor, also in recovery, he understood addiction on many levels and had compassion for his patients. This combination of education, personal experience, and compassion made him very good at what he did. The fact that people still talk about him, more than twenty years after his death, shows the impact that he made in the lives of individuals, families, and the Island community.

As someone who is also passionate about addiction and its toll on individuals, families and societies, I regret not meeting Dr. Killorn and hearing his thoughts first-hand. Since he has been gone for many years now, I would have to settle with second-hand stories…….or so I thought!  

At an event last spring where I spoke about addiction, I met Dr. Killorn’s son, Joe. He mentioned to my friend, Ronnie, and me that he had tapes of his father speaking that we could listen to if we were interested. I was so surprised, thrilled, and deeply touched.  This is truly one of the most touching things to happen to me on this journey through addiction. I can’t express how much it meant to me that I was actually going to hear Dr. Killorn speak, something I never dreamed was possible. Ronnie was grateful, too. She had known Dr. Killorn and thought the world of him.

The first CD I listened to was of Dr. Killorn’s personal struggle with alcoholism. I was so impressed with the things that he said. I grabbed a pen and started taking notes. I can’t tell you how many times I laughed out loud at his stories. He clearly had a great sense of humour. I am sure that served him well in his career. I thoroughly enjoyed this talk.

The other tapes included interviews and talks that he had given. He truly was an incredible man. He was up to date on all the latest research and findings in the field of addiction. He travelled across Canada and the USA to investigate what others were doing and he appeared to read extensively on the topic. When he found something promising, he implemented it in his treatment centre. I was struck by how advanced he was in his knowledge and how open he was to trying new things. He was way ahead of his time.

Dr. Killorn spoke about the disease of addiction like he would any other disease and he tried to educate the public about it. He was a true champion for the cause and we need more people like him. A doctor’s voice carries a lot of weight when it comes to educating and building compassion around the serious disease of addiction.

I am so thankful that Joe took the time to introduce himself to me and that he was generous enough to share something so important to him. Thanks to those tapes, I now have a greater sense of who Dr. Killorn was as a person and doctor. As I watched and listened to him speak, I was in awe of him. I also felt a sense of sadness that someone so wonderful is gone.

I now know why people thought so highly of him. His patients would never have felt judged. Instead, they would have felt that Dr. Killorn cared about them and wanted them to succeed. Ronnie has a wonderful story that proves how much he actually did care and what lengths he’d go to help someone. When her father was a patient at the Treatment Institute, he needed to leave during the day for work. Dr. Killorn gave him permission to do this, but the good doctor would spend most of the day in the parking lot of the garage where he worked to make sure that her dad didn’t drink. When he got off work, Dr. Killorn drove him back to the Treatment Institute for the night. What a wonderful man!

Rose

Deeper than the hurt

Deeper than the hurt

By Rose Barbour

This can’t be happening to us

It seems so unfair

A home full of love

How did it get in here?

Claimed by a disease

Ruthless and cold

My child is in a dark world

Where souls are sold.

It is hell on earth

Watching my baby slowly die

God please help us

I don’t want to say good-bye.

So many sleepless nights

Spent tossing and turning

I’m praying for a miracle

My stomach keeps churning.

There are no guarantees

Some will never get well

This life is hard

It is worse than hell.

But despite the heartache

And all the work

I love my child

Deeper than the hurt.

http://shadowsinpei.blogspot.ca/2014/12/deeper-than-hurt.html

Written with love for every parent whose child is struggling with addiction. We are the ones who have had our love tested in ways that others could not even imagine, yet it endures through all the pain. It is unconditional love and it runs deep. Addiction may redefine how we love but it will never change our level of love. We will always love deeper than the hurt.