My name is Jim and I am a drug addict. I used to say that at least once a day for many years, and even though I haven’t been to a 12 step meeting in several years, it doesn’t mean I let my guard down. With all of the surgery in my past and recent past, I have had an issue with getting providers to understand how bad it was, and how serious I am about my issues. Thank God that my d.o.c. (that’s drug of choice)was not in the opiate family, cocaine was my devil. Still, as my story will sadly show — cross addiction is real and really dangerous. So, let’s begin…..
In late 2000, after taking what I considered my ‘dream job’ after several years of fighting with sobriety and finally getting 2 years of clean time together, I walked into my boss’ office — he had also had to fire me several years back because I desperately needed to get sober. He looked up at me, smiled, and shook my hand welcoming me to the company. Then he said something very important — ‘Jim, you know you have always been a great addition to my department, both with your talents and your ability to bring people’s morale and participation up when the chips are down. If I didn’t believe that, you would not be sitting here today, but let’s get one thing straight from the start, this is not going to be about taking care of Jim Chud this time — one slip-up and you are out. Period.’ I was a bit teary-eyed at this point, and wholeheartedly agreed with him. I told him how I could not believe I was sitting there either, and how grateful I was to have a position that was where I would be if I had never left work — and that he could count on me. Four days later, he was canned, and a month later I was offered his job. The reasons for that are not important to this story, but I now felt 10x as responsible to not screw up. That was fine — until I went for my first check-up with a new HIV doctor.
I had a sinus infection that had been like a nagging, low grade, allergy flare-up for over a year, and my new doc ordered the standard diagnostic tests that my former doc thought unnecessary. Two nights later, at 9 pm — I got a phone call, and after just beating my Jack Russell Terrier, LD to answering the phone,(he loved answering the phone — almost as much as expensive sunglass chew toys) all the person said on the other end was, ‘ Is this Jim, now sweety, we’re going to get through this.’ ‘Who is this’ I asked and he said he was my new doctor and repeated his first line. He then explained that I had a very widespread fungal infection in the bone around my brain and in my sinuses, and that I had to start on an infusion of medication — daily — Amphoteracin B — good old ampho terrible — as it was called in the early years of the AIDS epidemic. I remember that every time I saw someone with one of those bags or bottles hanging over someone’s bed, that I probably would never see them alive again. I thought I was losing my mind when he said that. I didn’t feel like I was dying or anywhere near so, this just wasn’t making sense.
Ampho is a thick electric yellow fungicide that goes in via PICC (Peripherally Inserted Central Catheter) line over 4 hours. That was the good part, the bad part was that I had to be premedicated with anywhere from 50–200 mg of Demerol, and sundry other drugs including Ativan and Benadryl,iv — every day in order to tolerate the medication. When I told my doc that I simply could not do that because of my history. Like too many after him, he said — don’t worry Jimbo, we’ll get you through this. Besides, you would not like the alternative. After the first infusion, I knew I was sunk… and this was the only medication that worked against the fungus — which along with 8 operations purposed with digging out the infected bone and reconstructuring my forehead and 5 months of daily treatment, it did. Yep, I had once again survived another challenge that previously was considered fatal. Oh Goodie, sort of.
There is a gotcha here — after 2 months, I could no longer stand the times between treatments as even though I hated the way demerol made me feel, I had to have it every day — actually I wanted and craved it every day. The ensuing relapse lasted a few long months, and set my psyche back 20 years. I have never abused anything since that ended in 2002, but the first years were a real drag. Then, joy of joys, came the barrage of surgeries on my spine and other joints.
The absolute worst situation occurred when I started having severe lower back pain. I dutifully went to my spine surgeon, and he took the routine x-rays, and it showed nothing was wrong. My pain kept growing and growing, and I was sent to the director of the pain center at my hospital, who every two months would give me useless injections in my spines base, and up my pain meds a little each visit. The pain got so bad that I could no longer wear ‘briefs’ under my pants, and my pants had to be 48" waist or larger so that they did not so much as brush against my lower back. I wore suspenders for the first time.
This situation hit its crescendo when one morning I bent over in the shower to pick up the bar of soap on the floor of the shower, and a loud pop happened. It didn’t hurt, but it scared the hell outta me and there was a big new lump near the base of my spine. I was certain that I had broken one of the rods bracing my spine, and went to the doctor. After refusing to rub his hand over the bump — something that to this day I will never understand, he told me that I was imagining things and nothing was wrong. Off to the pain doctor I went. My level of daily opiate consumption, which had absolutely no effect on me was absolutely absurd. Here is the list at that point:
Methadone — 120 mg/day Fentanyl — 2–100microgram patches(this is the highest potency patch available at the time, and I was getting twice the maximum recommended dose) — changed every 2 days. This is the highest dose available — doubled. Oxycontin 80mg TID Oxycodone — 40mg QID and, for breakthrough pain — as if there was such an animal — 2mg Dilaudid I.V. TID. If you know what I now know, this is a totally lethal dose for anyone who was opiate naive. I had been ramped up to this and would have gone higher if the following events had not happened.
After the ‘pop’ incident, I returned 2 weeks later, and asked the radiologist to rotate me 45 degrees before taking the same films over. All she could say as the image appeared was Oh…Oh….she was crying at this point, I AM so SO sorry, you must be in so much pain. I asked her if I could see the film, and after looking around to see that no one else saw me, she said ‘oh what the hell, its the least I can do.’ Well I walked over to her display — 9/10 of my spine between L-1 and L-3 was black, as in infected. I was so angry and relieved at the same time — and kept thanking the radiologist for believing in me and I went to my exam room for the doctor, steaming!
He came in almost breathless saying Mr. Chud , we have a serious situation and you have to get yourself off of all of those pain meds before I can operate — blah blah blah — and I just stared at him and said ‘Gee, Really, what a surprise.’ He looked at me in a defiant pose saying ‘what — what — what do you want?’ How about starting with I’m sorry or I should have listened to you or something along those lines. Whatever he said, and nothing will change the situation now. I asked him how he suggested that I ‘get myself off of those drugs.’ He insisted that the pain center would take care of that and walked out.
When I walked back up to the director’s office in the pain center, he handed me an article — oh goodie — he’s been reading. He had just discovered that all of those things that he had been giving me were probably not working — again I had another of those “GEE, NO KIDDING” moments. He had moments earlier discovered this article talking about ‘hyper-algesia’ and that I, he pronounced as if he had known this all along but he wanted it to be real for me so he let me get to the point I was at, was hyperalgesic. So, he prescribed this insanely slow decrease in my medication which would have had my surgery in about a year’s time long after my spine had been eaten through. I managed to get down to just the methadone — and eliminated 20mg of that each day in 6 weeks.
Let me tell you, even though they were able to successfully sedate me, the post op pain was absolutely unbelievable. Added to that was the lack of communication between the pain department and my nurses that at times made getting any pain medication impossible. There is such a tendency of nurses to assume that one is ‘med-seeking’ whenever one asks for more pain meds, its barbaric. Unfortunately, many times I asked them to call the pain team for confirmation of what I was allowed to have, and many times they refused and said they didn’t have any written orders for more pain medication. Oh, by the way, that last statement was a lie. Not only was there a prescribed protocol for increasing my meds, there was an absolute order to call them if I needed more medication. This particular hospital has completely changed their methods as now all orders for pain medication are put on a white board in the room in plain sight of the patient. There is also the phone number of the pain doctor just in case. I can’t say it was because of my letters and personal complaints to the director of nursing — not to mention our 1 on 1 meetings to discuss these things, but I will bet that my complaints and those of others who corroborated my story had an influence of changing things. The lesson here is be your own advocate!
This is not a ‘boo hoo poor Jim’ story at all, if my story was unique in its description of the misapplication of pain meds and the current mindset of many nurses and doctors regarding the immediately dire consequences of delays or egos or prejudice interfering with a prescribed regimen, I would not have bothered telling this. After I finally was discharged, I decided to go to a treatment center in Tarzana that I knew would detox me off of the remaining methadone, and that there were fully funded beds for people with AIDS. I mistakenly believed that I would be out of there in 3 weeks max. When the doctor doing my intake sorted out how high my level of opiates had been he looked at me and said — Oh my god, you are going to be with us a long time. I was totally puzzled and he explained why it was going to take so long.
Until the last 14 of my 72 days in detox, things were manageable as their evil queen bee nurse ‘laurie’ was on vacation. Everything changed with she got back. This woman reeks of anger, resentment, envy, pride, and a tendency to abuse the power that her position conveys that is nothing short of sickly malevolent. Where the medical director and the unit operations director treat patients like people, she starts at ‘dirty little addict’ and it goes up or down from there depending on much one panders her. The nurse in charge until her return, and actually miss L’s supervisor was great until her return, then everything changed. Laurie is very tall, and I would venture to guess not a happy person in general, and as she came in on the tail end of my stay, she assumed several things that simply were not true.
I had self-admitted, meaning I wasn’t sent there by anyone including the state’s prop something or other, nor was I in the throes of beating my drug of choice. I wanted help getting off all of the pain meds. No one had told me to do so, I just wanted to feel normal again. From time to time, I, like everyone else, was being detoxed too fast, and went into shaking withdrawal. Even though the order was written to give me a ‘stat’ dose — meaning an immediate 1 mg oral dose to calm the shakes, she would act as if she could not have cared less. One had to sit at this desk in view of her elevated glassed in throne-room, while she would trim her nails, re-apply her lipstick, whatever, occasionally gazing at the stat-order and after oh a period of 3–4 hours, she would allow the medication nurse to give the dose. If you so much as looked at her, much less tried to get her attention, she would quipp ‘nurse get’s annoyed when you ask her things — and that just slows down the process.’ It was so barbaric, it’s hard to believe she hasn’t had her credentials revoked. I am sorry, but I maintain that browbeating is NOT necessary to detox someone. I admit, there was enough nefarious crap going on there to sink a ship, and people had a code of silence, lest you get beaten in your sleep. But just being cruel to anyone, especially if they are there depending on you for help, is inexcusable.
At about a dose of 1 mg a day, I started having severe pain at my incision site from my last operation. I had to be admitted to the local hospital which ended up keeping me a week. I kept telling them to just look at my incision, and even the ‘special surgeon consult’ called in, refused to do so, saying that my problem was either a kidney stone or in my bowel, and I had a battery of G.I. tests that yielded nothing.
The bottom line was that everyone at that hospital kept me at arm’s length for several quite unfortunate reasons: Where I was sent there from, my AIDS diagnosis, and because of my rich medical history. You know, it never ceases to amaze me how reluctant and scared surgeons are to touch anyone else’s patients, lest they be sued for something that was really the other surgeon’s doing. SOMETHING NEEDS TO CHANGE IN OUR MEDICAL SYSTEM. Well, many things do - this is just one.
When I went back to detox, the entire sequence of detox/pain events repeated(gee what a surprise). The fact that ‘the experts’ at Tarzana hospital found nothing wrong, to the treatment center staff, made me a drug seeking liar. Once again, I was told that ‘I am not a doctor’, so I could not possibly know what was going on in my own body. Queen Laurie pulled me aside saying ‘now Jim, people get scared to leave our safety here, but its time..’ I almost leapt at her throat when she said that, but thinking it better to just agree and get the hell outta there, I agreed with her and left. I went to the good old pain doc the next day and he ran his finger along my surgical scar and when he hit a small bump, I shrieked in pain. ‘Oh, I know what you have — it’s a neuroma. The vascular surgeon sewed a nerve into your wound, let’s get you into the treatment room and I will oblate it(burn it out with sound waves).’ 30 minutes later and the pain was gone. I was actually off all pain meds for a week, when, after a routine spine exam, I was back in the O.R. having another spine repair. So, all was for naught.
Today, I am still on a constant daily dose of Methadone — lower than before, but it’s there and I feel it. I once again tried to detox myself, and at this point, several years later, I really have so much chronic pain, that doing so makes no sense…and so it goes.