There comes a time in your disease when you just have to take a stand. It may not be what is recommended by your doctor, but you know in your heart that it is something you have to do for yourself.
Having said that, I am now going to tell you about my experience with going off of opiate medication. Please bear in mind that this was my personal decision and not medically recommended by my doctor. I am not recommending anyone try this; I just wanted to share my experience.
I have been on some type of opiate medication since 1999. I started long-acting opiates in 2003, beginning with Oxycontin and oxycodone for breakthrough, and trying Methadone, Duragesic, and Kadian (morphine sulfate extended release) at some point. I was recently on a trial for Fentora for a year and a half, which is a short-acting fentanyl medication that is being approved for chronic non-cancer pain.
December 2006 was a particularly hard month for me. My friends were all preparing for the holidays and making big plans for the new year. I, however, was going to the doctor and living my life in what I thought was a rut. In December, I began a search for some place that would allow me to medically detox off of my pain medication. My biggest concern was that because of the amount of medication I was on, perhaps my pain was not as high as my tolerance was. I also had concerns that maybe these medications just weren't working for me anymore. I felt that the only way to find out was to just... get off of everything.
I could not find a place geared towards pain patients. All I could find were places that were geared towards addiction with the twelve step process deeply entrenched in their daily routines, with zero tolerance towards taking ANY medication at all the minute you enter the program, and once you were out. I felt like I had no options, so I picked the best place I could find. They detox patients with a "narcotic cocktail"—lowering the dosage every 4 hours over 10 days until you are "drug free." You are then expected to go on to a 30 day rehabilitation program. My main goal was not to rehabilitate, but to find out whether or not I could live and function on a day to day basis with less (or no) medication.
I left for the facility on December 26th for a 10 day stay. The first three days were okay, but I didn't know that I was pretty sedated, at least under their rules. My mother and I developed a code. We both knew it wasn't going to be a cake walk, but we had heard horror stories about other facilities and wanted to make sure that if I ever reached the point that I couldn't handle it anymore, all I had to do was say the code word and she would get me out. Fortunately, I never used it... but thinking back on it, I should have. I voluntarily put myself through what I describe as hell, and all I really had to do was say the word. After the first three days the dosages started lowering to the point that I would get severe withdrawal symptoms in between the 4 hours. I had trouble sleeping, in fact I'm not sure that I did after a while. I was also in there with patients who were suffering from a different kind of addiction. My problem, if you could call it that, was that I took medication for my pain, whereas they seemed to have taken pain medication as recreation.
Finding someone who was a patient or who worked there that was sympathetic to my needs was nearly impossible. At first, they all thought that I was lying. It wasn't until later when I was curled up in the fetal position in "my chair" that they realized that I truly was a pain patient, not an "addict." People were nicer to me after that, but they still couldn't help me. They still pushed a "drug free" life and maintained that it would be the "best" for me.
I was appalled at the misunderstanding that even the medical profession has of the chronic pain patient.
We are not addicts, we are suffering, and we deserve to be treated as such.
I have not shared this story in a public forum until now. I wanted to make sure that when I wrote it, I could write it from a more objective viewpoint. I ended up staying 14 days because my withdrawal symptoms were so severe. I stayed because I honestly thought that they understood.
Now, I'm not so sure they did. It didn't work.
It has now been four months since my detoxification experience and I am back on pain medication. In fact, I'm back on the same amount that I was before I went. However, I have to say that it was worth the effort. I never would have known the true intensity of my pain had I not gone off of the medication. I now know that I am a chronic intractable pain patient… and I'm dealing with it. I'm not okay with it yet, but I am dealing with it.
This entire experience has motivated me even further to help those of you who may be going through the same thing. As I said, I haven't shared these issues with anyone yet and it was difficult for me. I will go into more depth in later posts. Meanwhile, I encourage you to share your opinions on what I went through, ask any questions, or share your own experiences.