My first hit of opiates after getting off.

I had one opiate exposure when I was six months off my long-term opiate use, to which I had not consented. 

I had surgery and the Propofol sent me back into acute withdrawal. It acts on the opiate receptors. I was so mad. I had told everyone on the surgery team, repeatedly and over and over, that I did not want opiates because the pain doctor and addiction psychiatrist said NO OPIATES for at least one year.

After I recovered, I filed complaints with the State of California on everyone who had a license to whom I had told, “NO OPIATES!! UNDERSTAND??” that day.

Here I am getting interviewed by an investigator from the California Department of Consumer Affairs. He asked for a witness. We were close to Mr. Pennington’s office, so he came over to give a statement. State investigators are prohibited from posing for selfies, but he was kind enough to take this pic. 

The interview with the investigator, who was extremely good-looking and carried a badge, was the very best psychotherapy I ever had for my drug use. It turned out that a large part of his job is busting doctors who are addicted to opiates and benzos. These doctors lose their licenses, have hundreds of thousands of dollars in medical school debts and still fail drug tests. This makes him face palm. Why can’t they stay off?? He wanted to know the nitty-gritty of my withdrawal. He really wanted to understand. I unloaded. We talked for hours. It relieved my soul. I hope I helped him have some compassion for these doctors because getting off opiates is pretty much impossible.

Back to that regrettable surgery, somehow the anesthesiologist’s name was not on my records and someone else’s name who I never met was there instead. This makes me very suspicious, since I had told the anesthesiologist that I was going to file a complaint. Had he removed it? I mentioned this to the good-looking state investigator.

I also filed complaints at the hospital for their internal investigation system. I was mad.

I truly hate filing complaints on doctors, because I respect them, and I know they have a very difficult job. But I did say, “NO OPIATES!!” If I didn’t take the time to stand up for myself, I would have to crawl under my bed and stop trying. You get very beat-up being a patient. It is a horrible career choice.

When I went back into acute withdrawal after that surgery, I did not have anything left. I had already hit the bottom with my shovel. I could not dig any deeper. I got pneumonia. I dislocated a rib coughing. I could not take a Vicodin for that agony. It took me four months to get over the pneumonia. We had tickets to Coachella. We had to sell them. I was too sick to go. 

Who knew my complaint would get so far? It comes down what shows in the records and what is a clear legal violation. Giving a patient drugs they did not want is a big deal.

Always get your records. In California, the doctor has 15 days to get them to you, no cost except a reasonable copying fee. I cannot believe the resistance I have encountered, trying to get my records: illegal fees, flat out refusals. I am happy to remind everyone what the law says and let them know I do know how to file a complaint about that, too. I don’t mess around. File a medical records complaint with state and federal agencies. 

My medical care is my life. I file a lot of complaints. You never know which ones will stick. This was not my first one to stick. I got a license revocation on another doctor, thank you very much. As soon as I can bear the pain of telling the story of what happened between that man and me, I will. So far, not yet.

Get your records as soon as medical people start mistreating you. You might surprised as to what you find. This was not the first time people I had never met were signing my records saying they had treated me.

It is your right to write an addendum to your records any time. Like if you are in the situation where Doctor doesn’t believe EDS is real, write the conversation down, note something from a medical article about why EDS is real, give it to the doctor with a request to put your addendum in your records, then file a complaint with the state. I promise Doctor did not note in your chart that he told you that EDS is not real. He probably called you a hypochondriac or malingerer. Reading your records can be humiliating. The state may not do anything to Doctor, but Doctor will regret having said that to you. There is a good chance he won’t say that nonsense to the next EDSer. You have done a good thing by putting yourself through more. 

Doctors really do not like complaints being filed on them. I always tell the doctor when I do, because that might be my only moment of recourse. I have been told that I have a reputation for being a difficult patient. I am proud. I can only hope all doctors are afraid of me. But I do try to win them over with charm, a great outfit and by being polite to their staff, not threats. Truthfully, I am very understanding about misunderstandings at the doctor's office. I never complain about waiting. I am always appreciative. I ask intelligent questions. I follow their advice. I am the nicest patient, until the relationship has become unsalvageable.

You can also report insurance fraud to your insurance. Call them up and tell them what happened. They love it. They will ask you for your records. I hope you got them already.

I have even recovered funds for my insurance company, just by calling someone who I had never met who had charged my insurance thousands of dollars for nothing. I left a long message explaining how I received no services and insisting they give that money back immediately. They did, before my insurance company could even ask for it. We are a team, my health plan and me.

Vicodin, now.

I get Vicodin for travel because my worst fear would be to have a pain meltdown on a plane and cause an international incident. But truthfully I feel better having it around. When you have a disease like Ehlers-Danlos, the pain is deeply traumatizing. 

Because of electronic health records, all my doctors can see the prescriptions I fill, so everyone knows I am not running around getting multiple bottles of Vicodin. Drug addicts were doing this, which incited the overly dramatic opiate crackdown and subsequent unjust persecution of my people, the patients who are for real in intractable pain and desperately need pain medication.

I go to the pain clinic at UCLA Santa Monica because the best-looking residents are there. I do not know why that is, but I am down for it. I will never be too old to flirt with a medical resident. You get a nice chunk of time with the resident there before the real doctor comes in. You gotta enjoy what you can.

I would be fine with 10 Vicodin but my doctor whips out a scrip for 30. I love that. She trusts me. She should. I comfort doctors because I give them hope that someone could get off. In a year, the pills expire. I get rid of them and make an appointment to see the yummy residents—I mean pain doctor—again.

I have rarely taken a Vicodin in the time since June 2014. 

I no longer seem to tolerate Vicodin. I have thrown up from it. I thought that was a coincidence until it happened a second time.

The last time I took one, it felt like I had some withdrawal phenomenon when it metabolized out, not too many hours later, as Vicodin is out fast, and withdrawal phenomenon from it is swift. Hours after I took that Vicodin, I was so squirmy and uncomfortable, I could not sit still. It was complete torture. Unfortunately, I was stuck on a plane. I drank wine, as the Vicodin had completely metabolized out by then, thanks to flight delays. That helped not at all, so I finally took a muscle relaxant. Don’t ever do that, mix alcohol and drugs, as that is how people overdose and die. But I was losing my mind from discomfort on this plane. I did not want to be the cause of an international incident.

I got no relief from wine or Flexeril, which is very strange. I know what to expect from my pain. I know what to expect from Flexeril. This was out of bounds. This was like opiate withdrawal. Even though I was in the most uncomfortable plane seat ever made with zero leg room, maybe the Vicodin was the bigger problem? I do not plan on taking another one, either a Vicodin or a flight on Virgin Atlantic.

I do plan to ask the resident when I see the pain doctor again, if I could still be that sensitive to opiates. He won’t know, he will have to ask the real doctor. It will be fun. Probably no one can tell me for sure. I have a strange body and am very drug sensitive.

So, how do I manage my pain now?

Wait for the next post.

I made it to Coachella the next year after that horrible bout of pneumonia. Axel Rose rocked. 

I absolutely love to dance. Being able to dance is my favorite gift from becoming less flexible.