NOTE: Though this may be a bit long I am opening a window of my present not yet shared...
In the late 1980's I had the honor of being asked by a team of doctors to become one of their patients for what was then the first Pain Clinic in the nation. I was exactly the kind of patient they were seeking to help most they said...
"Why?"
"Because without a doubt you are living with severe pain not only orthopaedically but the most severe spinal cord inflammation disease we have ever seen. You have had seven spine surgeries, learned to walk again twice. And yet you have never applied for disability and STILL are working and WANT to keep working. Besides caring for and riding your horse! You have told us the pain has reached a point where you need greater pain relief to continue living your full life longer before things worsen."
"So do you guys have a plan?"
"Yes, we do."
"We want to put you on methadone."
"Isn't that for heroin addicts?"
"Yes, but we have learned recently it works well as a longterm pain med for those like you who we know need to be on an opiate for the rest of your life. We want to prescribe it to patients like you, because we strongly believe it will allow you to continue your full life longer. Also, because you are a patient who has already been on opiates for pain, you are a stable patient."
"Meaning?"
"You never run out of your medication early, give it away or try to sell it. Another reason why you are one of the thirty we have chosen to do this with. A lot is riding on the thirty of you and us. If we're successful, more Pain Clinics can be launched nationally."
"So what's first?"
"Giving you a prescription you can only get filled here. Then you, and we, your doctors, will be documenting everything. Ready to do this?"
"After the terrible prognosis I received recently about where this horrendous inflammation disease will be taking me, my options ahead are "dire," is the word my Orthopaedic Surgeon and the Chief Neurosurgeon used. So yes, let's do this. And by the way, I am honored and grateful not only to have been chosen but to help you guys pave the way for the many others living with pain out there."
"And WE are honored to have YOU as our patient because you are the best candidate we could have hoped to help us. Dr. Kopits and your team of doctors think very highly of you. Oh, and how they all keep hoping and praying you stay on your horse when galloping from now on!"
"Hey, now I only was injured once three years ago when I fell off galloping and it wasn't my horses' fault because a huge grasshopper flew into his eye causing him to suddenly stumble west while I flew east and..."
"You broke your tailbone in TWO places instead of ONE place like everyone else because YOU like to think BIG!"
"DAMN, you guys really DO write everything down in those records!"
So I ended up successfully being on methadone for twenty-nine years. And yes, we thirty patients did successfully help pave the way for other Pain Clinics like the first, run only by Anethesiologists who were also the only doctors allowed to write such potent scrips for their patients.
Though I was reminded early on they could still go way up yet on the dose I was originally prescribed, I refused to, for the simple reason I was only in my mid-thirties then and had yet a LONG way to go in the years ahead when I would need to increase the dose the most. Thus for those twenty-nine years I was on methadone, I never asked to increase it.
Sadly and infuriatingly though, we never got to that place because the opiate crisis came crashing down, which has not affected the abusers, oh no. It instead has ripped away the only help legitimate chronic pain sufferers had.
And this is the sinister way...the dangerous way I have been affected. For you see, because methadone was killing those abusing it my doctors were suddenly not allowed to prescribe it anymore. The problem of that with me is how long I had been on it, for methadone is very addictive. Obviously in my situation my body was addicted to it, but not as an abuser.
My doctors launched appeal after appeal explaining my situation to get a waiver for me, but they were all denied. When the last one was denied in December 2017, my doctors only had so much time remaining to write me prescriptions without having their licenses revoked.
I saw the writing on the wall realizing I was facing one of the most horrendous challenges of my life, and possibly dangerous. So while I still had two months worth of methadone I began decreasing the eight I was on a day by a half each week. On my own.
When I saw my doctors in January 2018, I had gotten it down to six from eight. They were not only astounded but incredulous at my resolve to do this on my own. I reminded them we didn't have any other options so I had to act. I did not ask for, yet at their risk they wrote me out a scrip to give me an additional month's worth to stretch the withdrawal out further.
I never deviated. Each week I decreased the amount. I cannot begin to describe the severe pain and withdrawal effects I was going through. I pressed on. There was one Pain Clinic still allowed to remain open, with two Anesthesiologists who could yet prescribe certain opiates but not methadone. They absolutely were not taking any new patients, however after my doctors told Dr. Holt about me he was happy to take me on.
My case was documented because nothing like what I was doing had been done before. Ever.
Dr. Holt checked. The longest heroin addicts had been on methadone was one to three years. And suboxone was used to ease their withdrawal effects of methadone. It took them one to five years to withdraw from just three years of having used methadone. There was no documentation in the U.S. of anyone having used methadone longer than three years.
I was on it twenty-nine. And doing it on my own without suboxone. Dr. Holt and I discussed suboxone. He said most addicts using the suboxone treatment then become addicted to it. I was determined I wasn't going to put myself through more hell and decided not to use suboxone.
Dr. Holt told me he had seen a lot in his career but had never encountered a patient with as much courage and guts as he was seeing in me.
I was determined to complete the methadone intake by July of 2018. Those last weeks were a nightmare. Until I was finally off the methadone, Dr. Holt could not prescribe another opiate. In my situation he got approval to put me on a potent opiate.
However, this didn't mean my body would not continue experiencing severe withdrawal effects, and for how long, no one knew. We were...we are in uncharted territory.
The worse withdrawal effects were hindering the pain easing effects of the opiate Dr. Holt put me on. He received permission to increase it to its highest strength. Then there were, and still are, the severe sweating yet being freezing cold. The past three summers I have been bundled up trying to get warm. My temperature plummets to dangerous levels. The winters are still a nightmare.
Then there is the pain from not only the withdrawal but not having adequate pain relief anymore. And yes we tried Marijuana oil but the withdrawal effects worked against its benefits.
So we are still continuing to chart new territory. We have no idea how long the withdrawal effects will continue.
According to Dr. Holt who has presented my case to other doctors including those helping addicts, they are taking note of this extraordinary (their word)
Little Person who took on methadone withdrawal having been on it twenty-nine years, and doing it on her own.
I feel damn proud of what I accomplished even if I am going through physical hell.
Now I have dared open another window sharing what I am living with in the midst of my ever worsening and very painful spinal cord inflammation disease shutting everything down.
Hopefully my having shared this here finally will give anyone reading this courage to face their own challenges whatever they may be.
May Adelaide's force be with you always...😃👍💫
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