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Starting a Patient Run Program - Tracy Gilmore & Cindy Bowers
Cry to Death - Anonymous
From the Editor - Regarding Methadone Today distribution
Term Limits for Recovery (Letter to Senator) - Sherry O.
Doctor's Column - Dr. Dole (question regarding donation of a MMT patient's body to science)
Starting your own program sounds like an impossible goal -- while it will be hard work it is doable! You will not be first patient to open a program and hopefully, you will not be the last. The primary reason for a patient opening a program is that it will give you and the patients on the program control over your treatment. This can ensure that policies set by the program are patient oriented and make sense instead of placing treatment and policy in the hands of so-called professionals who do not understand addiction or the medication they administer. The system has become abusive and uncaring with poor quality treatment and support services.
Providers like to blame the regulating agencies for the contra-therapeutic policies they must adhere to. Patients and even professionals working in the field have believed this for years while the reality has been that it is the programs themselves that set the most abusive policies. For example, the federal regulations do not set dosing limits. The Food and Drug Administration, which is responsible for this, asks to be notified about any patient prescribed 100 mg/day or more. A few states like Pennsylvania do set a limit of 80 mg/day, but that is still a therapeutic dose.
So why do over half of the programs in the US set a policy of prescribing no dose over 50 mg/day or even less at 40 mg/day? The answer is simple, they have based their decision on ignorance -- ignorance over the biology of addiction and the medication that controls it namely, methadone. Other examples are blind dosing (about 37% of all programs do it) and urine testing for which the federal regulations state that programs must ensure that urine samples are not falsified. The way to do this is left up to the programs resulting in the demeaning policy to supervise urines, video cameras, see through mirrors and all the contraptions and humiliations that programs put patients through.
Why do programs do these things? The only answer that seems to make sense is ignorance. Programs are primarily administered by social workers--behaviorists. They have had no education on drug use--nothing. The education that most social workers, clinical psychologists and rehabilitation counselors receive is anti-medication and if methadone is mentioned at all it is negative. The neurobiology of addiction is not included in the curriculum, instead behaviorists are taught that addiction is a character disorder. Like the public, behaviorists erroneously view addiction as a choice--except that they are supposed to be the experts!
Yes, but what about the physician in the program, after all doctors should have a basic understanding of the biology of addiction. Unfortunately, the education in medical and nursing schools, like schools for social workers teach students that addiction is primarily a behavior disorder. Young doctors are warned about heroin addicts and told to keep away from them because they just want drugs. Thus, medical professionals do not see heroin addiction as being under their domain and acquiesce to the behaviorists.
This is slowly beginning to change, but changing 70 years of the DEA's propaganda will take time. The American Society of Addiction Medicine (ASAM) which was very anti- narcotic maintenance now has a committee for maintenance medications. Another positive change is the American Medical Association's (AMA) recognition of Addiction Medicine as a speciality. Physicians can now obtain training and certification through ASAM.
The only answer for the moment is to open your own program. It
will require work, but think of the advantages and most important you will
have control over your treatment and so will the patients on the program.
But every once in a while my body gets so full of tears that I can't hold even one more inside. This is when they finally come crashing out in agonizing torrents that I just can't stop. I cry until my whole body aches--my head, my eyes, my chest, my throat, my heart; everything just aches beyond belief. I'm always so surprised too, of how much pain and tears are in me, how horrible the true depth of my despair is and the frightening extent of my loneliness, even within the midst of people who love me and want to help.
I think the loneliness of being ill is harder than the illness itself sometimes. My own words seem to minimize the reality of what I feel...the extent of my illness, the depths of my despair, fear, and loneliness. So I say nothing and just don't allow myself to cry. I bury it. I did tell one person who also suffers from HCV that I was very ill right now and having a really tough time. He wrote back saying, "I'm sorry to hear this. I'm not sure what to say. We're all sick." Exactly. We are all sick.
Sometimes the 'inner child' in me starts to think, 'I'll bet the only person in the whole world who would have the capacity to understand this kind of pain and would know it doesn't require an anti-depressant, who would know that what is required is comfort, support, and love, would be a mother... or a father'. But I don't have a mother or father.
But, the sad truth is, that for many, even having parents who are still alive doesn't guarantee that they will get the type of support that we expect from parents because there just isn't enough information available to let them know how serious it is. Because our doctors, as well as our governmentally-connected institutions, like the NIH, minimize our symptoms and the other effects of our disease. Many of our parents just don't believe us--this is even more painful because we still know that if they were better educated, they may then have the capacity to give us that special kind of support that comes only from a parent. I hear from a number of people who say that their parents just don't believe them, that they feel deserted by them. . . and the little child in them still cries over this terrible, traumatic abandonment.
But the story of my mother's death, as well as my dad's own horrible death could fill a book. This is just a digression at a time when I'm feeling particularly vulnerable and in need of their comfort, support, and protection. . .although from what I don't exactly know. My disease? My fear of being alone? My fear of how this disease is affecting my family? My fear of the horrible ongoing symptoms? My fear of how my family will survive my death. . .that they will have to watch me die?
I always get so angry at my immediate family, my husband and kids, when I go through one of these episodes too because I always think nobody seems to notice or care. But now I'm beginning to be not so sure that that's really the case. I've had this ongoing fantasy of what the scenario should look like for a sick person who is truly being loved by their family. In my fantasy, I'm laying there in my bed, so sick I can hardly sit up. I'm weak, I can't eat; speaking takes too much energy which, during some of my flares, is truly the way it is for me. But in my fantasy, my husband is sitting on the side of the bed stroking my hair and telling me it's going to be ok, and he's there to take care of me. My daughter comes in from school and says, "How are you doing today, mom? I can see you really feel sick; can I get you some tea and toast?" My five year old son understands too and says things to me like, "It's ok mom, I can get my own drink" and then starts bringing me a truckload of drawings and paper snowflakes that he learned how to make in school that day. They're all gathered around, their main goal is giving me support and making this disease easier to bear as best they can.
But this is not what happens. My husband is very good about doing things for me, bringing me food, running my bath, taking care of our son, doing the cooking, cleaning, grocery shopping, laundry, letting me lay in bed while he is working a full-time, very demanding job. But he becomes painfully tense about showing any emotion or saying anything that requires it, like in the scenario I just described. I become angry and resentful that he's not fulfilling my fantasy because 'if he really loved me, he'd show it that way', I tell myself.
But that's not true. The reason? He's just as scared as I am. Every time I have one of these flares, I become terrified that this is the one that's going to kill me--and so does he.
The truth is that people just don't know what to say---so, they say nothing. I think that they worry too that their words might make us feel worse or scare us---or maybe they even think their words might trivialize what's happening too. I think that this may be the case even if they can't quite get the thoughts together or articulate how they feel. The pain is too much for them too, their feelings are scary to them too, best to keep them inside--but it doesn't mean the love is not there. I always got resentful when I'd begin to get better, and suddenly, there he was asking if I'm feeling better, sitting on the side of the bed, stroking my hair, giving me my fantasy. I thought 'Oh yeah, now you're there, now that things are easier! But where were you when I needed you the most?' And sometimes I'd even say that to him, which of course would only make him angry and defensive. He couldn't answer me; he didn't know himself.
But I think I'm beginning to understand now. It's because he gets just as scared as I do. I accused him of being selfish but never stopped to think, 'Who's there telling him it's going to be ok?' Saying, 'Don't worry, I'll be there for you.' Because the reality of the matter is that I'm not there for him during these times; I'm worrying about dying, or wishing I would, worrying about leaving him and my kids a legacy of death. I would only allow the idea that he's suffering a loss too to penetrate the outer surface of my mind. I would not let myself think about the possibility that he might be thinking 'What will I do if she dies? How will I be able to handle it? How will I be able to help the kids through it? I'll have to be strong so my kids, parents, sisters and brothers, and her family doesn't have to feel helpless. I don't know if I can do that. I don't know what to do. I feel so alone, and the truth is that the only person close enough and intimate enough to help him through a situation like this would be me, and I wouldn't be there. He would be alone.
My 16-year-old daughter is truly a special gift, my precious, beautiful gift. How would it be for her? Would it ruin her life? Or scar her for a very long time? Would it leave her alone at a time in her life when she needs me the most, like now? Who would be there for her in the way that I am? My five-year old son may weather it the best if I died now, but as time goes on, the pain of my death would become greater, more meaningful, and more painful--which is, the likeliest way it will happen if we don't find a cure.
So what do we do? We deny our feelings. We keep our words and resentments and feelings of loss inside; that's what we do. We wait until the flare passes, are grateful that it's passed, go on as if it didn't happen, each of us continuing to feel alone until the next time it happens, and it starts all over again.
But I believe we can do something about this. Every single one of us can help too. We need to activate. Join in solidarity and start demanding that our government fund research and support services, not just for us but for our families too. We have to do this or the ultimate victims of our disease and death will be our families. They will be left to pick up the pieces of their shattered lives and we, who they need the most, will be gone. We must unite and become vocal. We have to form a union of people unwilling to allow this to happen to us and our families by insisting on funding for research and a cure. My hope is that we can do this before so many of us have died, leaving our families to cope without us, for the rest of their lives being forced to explain, "my mother, my father, my wife, husband, partner, my child, my love. . . died from hepatitis C before they could find a cure."
More people will die worldwide from Hepatitis C than from AIDS, but no one is aware of it. AIDS is still being recognized as the 'epidemic of the century'. I keep thinking about the day the cure is found, how many people will have died first, how many will have died the day before the cure is found.
I'm asking that every one of us become involved in activism. My friend was right that we're all sick--but every little bit will help. Join in the ongoing campaigns, the letter writing, maybe the protest marches. I want to get 'sensitivity packets' written and available to the families, doctors, therapists, and friends of HCV victims, information on how they can help us and how we can help them. But we need everyone's help and participation to achieve this and all the other areas of needed support for this catastrophic disease. Even if you cannot physically join some of these types of campaigns, your ideas and thoughts will be a major contribution. Just join.
Numbers. The numbers of us is the key. It's not too late, yet. Please join in; you can do something. At this time, all we have are each other, and we need everyone. END
Note: In some areas, the rate of HCV for
those enrolled in methadone clinics is upwards of 90%. You may have
HCV and not know it for years. Get tested! Treatment is available,
but it is difficult to find a knowledgeable physician. Some will
insist that patients ‘get off methadone' before treating them; they erroneously
believe that methadone damages the liver.
No questions for you just a response from someone who has been involved with clinics for over 20 years. I would like to fill in a couple of blanks pertaining to dosing (I'll make this very brief).
As a traveling professional I have been to over 80 different clinics. I used Chicago as my home clinic even though I lived a two-hour plane ride away from O'Hare. Clinics that dosed me at a blocking dose, over 70 mg, successfully removed 100% all inclination to use; never one dirty urine.
The rocky roads were at clinics that had low-dose-only policy, 40 mg. and down. The hunt and chase on the streets were never stopped, and I continued to supplement. I am one who thrives on the thrill of the fox hunt in a new area for dope. I have six clean years at a clinic that believes in blocking dosages, with not one slip or even an attempt.
I measure my life through the successes of my children, I pray that they can go out into life with level attitudes and eyes open. I have four children, all in private schools and three maintaining honor grades without being pushed or cajoled in any manner; they are doing it for only themselves.
Through the years, I have sat down with all of them and poured my heart out concerning a series of very bad choices on my part. I explain that addiction is genetic, and they will have to spend their entire lives constantly on guard against any type of abuses be it drugs or even being overly compulsive with school grades to the point of letting it rule your life. The talks are long and often.
My addiction came home with me during America's favorite war, Viet Nam, and I never let go. What a scar that has left on this country.
When blocking doses are used, you do two things--save lives and prevent crimes. I won't even get into crimes; I'll leave that subject alone. END
I love Methadone Today. It's a real eye-opener. The personal stories open my heart, as well.
I wanted to clarify information from NAMA (National Alliance of Methadone Advocates) published in the November issue. What's not well known, because it hasn't been widely reported, is that the costs of treating people with AIDS has come down drastically. At least three recent studies have reported that hospital costs are down dramatically and pharmaceutical costs are UP greatly, but overall, the costs remain much lower than what was previously seen. So the upper level of $300,000 a year for a symptomatic PWA (person with AIDS) is now rarely seen (actually, that's an extremely high figure even for "the old days"). As most of your readers have probably heard, hospitalizations and deaths due to AIDS are down substantially.
The HIV field changes constantly. Your readers who take methadone and would like a free subscription to our magazine, Positively Aware (which comes out six times a year), should contact me. We focus on HIV clinical care and some social issues such as finance and prevention.
Thank you for all the great work you do.
Note: Thank you, Enid. We appreciate
all feedback and/or corrections. - Beth.
House of Representatives
To Whom It May Concern:
I am a mother of two children, one in college and one on the way to college after she graduates this year. I am currently in college myself part time, and I also work part time as a behavioral coach for the physically and mentally impaired.
I have been in the Methadone Treatment program for 3 ½ years, and I have never relapsed nor even thought about it because of my medication. A lot of people have to take something to help them stay healthy or stay alive. This medication helps me stay alive and healthy, just like insulin for a diabetic or chemotherapy for a cancer patient.
Twenty years ago, I gave my kids to my parents whenever I went on a binge, because I didn't want the state to take them. But then I just stayed on that binge and never picked them up again. I hated myself; I tried everything to get off drugs but kept going back in deeper and deeper.
I tried pills to get off heroin, alcohol to get off the pills, then back to heroin to make people think I wasn't an alcoholic. I went in and out of 30-, 60-, and 90-day in-patient treatment facilities and even to intensive outpatient rehab treatment programs. I hated myself, and I especially hated being a drug addict.
The very last time I went into a 90-day in-patient treatment program, I told myself, everyone in there, and my family also that if it doesn't work this time, I will take a gun to my head and KILL myself. My mother said, "Thank You, I hope you mean it, because I would rather bury you than go through this again, and your kids won't have to worry about you any more if you're dead."
When I left that last place, I had to find a place to stay, which was a drug infested hotel room, and I felt terrible from the moment I got outside. Something inside of me didn't feel normal; I didn't even know if I knew what normal was, but I knew that this wasn't it. I was in constant pain, I was always sweating, I was always shaky and nervous, and I felt like I didn't even belong in this world with the "normal" people.
I went on like this for five months before I couldn't take it anymore, and I relapsed. I was just about to kill my self when all of the sudden a friend told me that he was on his way to the methadone program that he's in and asked me if I wanted to try it. I immediately stated thinking about my kids and went with him.
That was three years ago. Since then, I got a job working with the physically and mentally impaired. I'm good at my job, and I love it. Before the methadone program, I couldn't hold down a job for more than three months. I got married to wonderful man who was the only one that stuck by me. I've been in college for a year and a half now. I'm working toward a Masters in Psychology and Social Work, and I'm on the Dean's List too. I pay for everything myself, and it feels great to be able to do that.
My family looks at me with respect now, and I help my kids with money for used cars, clothes and everything I couldn't have dreamed of before. Because if it weren't for the methadone program, I wouldn't be able to do any of these things, and I'd be taking from my kids and my family, not giving.
I pay for my treatment and my counseling out of my own pocket now, because our insurance won't cover it. But if it weren't for being on Medicaid at first, I would be dead, because I couldn't have paid for it myself.
I can't believe that someone actually is considering putting a term limit on this program, insurance or not. I would literally lose my life without my medication, just like a diabetic would lose their life without their insulin. Come on, this is crazy!
Don't take away or put limits on the only thing that's actually working. For God's Sake, please! This is the only thing that keeps me sane, healthy and alive, and that goes for a whole lot of other people too.
Unfortunately, our DPF grant will run out with this month's Methadone Today, and this will be the last newsletter distributed free at clinics or individually. Methadone Today will be available by subscription only. It is published monthly and is normally delivered the last Wednesday of each month (e.g., the January issue will be delivered approximately the last Wednesday of December).
No one associated with DONT or Methadone Today receives any financial remuneration for their efforts. All monies collected through any means, including subscriptions, is used to physically produce Methadone Today (duplication and distribution costs), as well as maintaining and expanding DONT's library of substance abuse treatment information and the DONT web site.
We have been providing free copies to most clinics throughout Michigan and individuals throughout the US and beyond for the last two and one-half years. We hope that all of you have put to use what you have learned about your medication, treatment, patient rights and that you and/or your clinic will send for a subscription. Membership fees help us provide individual and group advocacy, including educating the public, policy makers, clinic staff, and patients themselves.
Many thanks to individuals and clinics who have been subscribing right along.
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