And on the seventh day: Relief, rest, and ruminations on responsibility

If my wife's pain relief nightmare began on Wednesday of last week, then the seventh day of that nightmare was yesterday. I am thankful to report that the day went well and the nightmare may now be over, although it wasn't actually a nightmare, it was a reality, one we had to live through, and doing that burned a lot of energy. So I decided to rest my blog on the seventh day and just use Twitter and Facebook to let people know the good news: Chey now has a doctor who cares!

ThChey's off-road racere new doctor seems to be just what a doctor should be: she is compassionate, a good listener, a good communicator, thorough, knowledgeable, and able to acknowledge, as we all must do, the limits of our current knowledge, as well as a willingness to further expand our knowledge. Of course, the relief that comes with this news is tempered by the indignity and distress experienced in getting to this point.

But the bright side is still bright: Chey now has an improved regimen of pain medication and NO pain contract. (I decided to celebrate with a photo of Chey smiling, from the front page of the local newspaper in Alice Springs, Australia, where she was preparing to take part in the Finke Race 2000).

Something great about Chey's new doctor? She is not a fan of pain contracts. In fact, if you find yourself looking for a doctor, perhaps after moving to a new city like we did, a good tip is to ask any prospective doctor: What do you think of pain contracts? If the doctor agrees with Dr. Kevin Pho that pain contracts threaten the doctor-patient relationship, then you probably have a winner (but no, Dr. Pho is not our new doc).

Finally connecting with a good doctor yesterday was such a reversal of medical fortunes that both Chey and I are suffering from a sort of psychological whiplash. We will take a few days to recover, but then it will be time to move on to post-crisis analysis and lessons learned. Perhaps the biggest question to answer is: Why did things go so horribly wrong? Who was responsible? If we can answer that we may be able to save other people from a similar fate.

Talking of responsibility, I do feel obliged to keep spreading the word about some of the nasty things this incident brought to light, like pain contracts. Expect a blog post on the topic later this month delving into questions like:

  • Are they legal?

  • What should they include to protect you, the patient?

  • How to add a clause that protects you?

Let me close with another big THANK YOU to everyone who expressed support for Chey and outrage over her mistreatment. We will try to do what we can to inform others and prevent this from happening to anyone else.

Why day 6 is really day 3355 in Chey Cobb's chronic pain management nightmare

Day 6 and we are keeping hope alive (despite day one, day two, day three, day four, and day five). In a moment I will explain why day 6 this is more like day 3355, but first an update. As the saying goes: My wife is resting uncomfortably. She has an appointment with a new doctor on Wednesday and, eternal optimists that we are, we are looking forward to that.

Chey reading on the aft deck of Home Shore, an 80-foot fishing trawler making the Inside PassageYou pretty much have to be an optimist to live through years of chronic pain as my wife has done. Sometimes hope is all you have to go on; hope of relief, hope of achieving management of your pain at levels that make life livable.

Chey's 50th birthday was 3,355 days ago and she was in pain that day. I remember because I baked a Baked Alaska and she only had a very small slice even though I did a pretty decent job of it (the Baked Alaska was to go with her present: passage for two on an 80-foot fishing trawler sailing from Sitka in Alaska to Seattle).

On that trip, in September of 2003, Chey had yet another really painful migraine. When we got back home she had a bad reaction to a seizure medication they sometimes prescribe for migraine. It is hard to remember any pain-free times since then.

Sadly, there is growing evidence that chronic pain is not only painful, but also life-threatening. We read on Web MD that Severe Chronic Pain Lowers Life Expectancy. The article states:
Previous research has demonstrated a clearly negative influence of chronic pain on health. Now, a new study portrays a profound link between severe chronic pain and death; inflicting nearly a 70% greater mortality risk than even cardiovascular disease.

The study indicates that even after you adjust for sociodemographic factors and the effects of long-term illness, "patients with severe chronic pain had a 49% greater risk of death compared with all-cause mortality and a 68% greater risk of death compared with all cardiovascular-disease-related deaths."

I appreciate that the author of the article agreed with me that "The most critical information to take away from this research is that withholding appropriate pain medication is a virtual death sentence." In other words, this means that doctors who "don't believe in" using narcotic pain medication "are sentencing some of their patients to an early death."

Now, put this in the context of my wife's recent experience, being cut off from pain medication for seeking more medication. The author writes:
"families and friends of severe chronic pain patients must never try to dissuade the patient from using all appropriate treatments and medications to reduce pain. Convincing such a patient to avoid narcotics, if and when they are appropriate, is equivalent to pushing them into an early grave. Instead, physicians and families must encourage the chronic pain patient to employ each and every possible treatment, including comprehensive pain management programs and powerful pain medications. It is no longer a matter of making someone more comfortable. It's a matter of life and death."

The referenced article is: Torrance N, Elliott AM, Lee AJ, Smith BH. Severe chronic pain is associated with increased 10 year mortality. A cohort record linkage study. Eur J Pain. 2010(Apr);14(4):380-386. As the author of the WebMD item notes, this new research is comprehensive, vetted and validated. There is a link to the abstract here:

If you would like a copy of the full article, leave a note in the Comment field and I will see what I can do.

Day 5: Why not palpate and evaluate?

Chey is feeling slightly better today as the Ativan they gave her in the psych ward wears off. Still lots of pain and some slurred speech. As of 4PM nobody from Sharp HealthCare has been in touch. AFAIK, their patient advocate delivered his report at 1PM today in the full knowledge of how badly Chey has been treated by Sharp so far.

Again I want to thank the folks from around the world who have expressed moral support for Chey. In particular I want to thank fellow veteran IT writer Mark Gibbs for shining light on the situation in his Forbes blog.

Why Not Palpate and Evaluate?

As I sit and wait for calls to be returned I get a chance to replay events of the past few days and new questions come to light, like: "Why did nobody at the hospital palpate Chey?" Okay, that sounds a bit weird if you don't know that palpate is the medical term for pressing on the patient's body (like many people I sometimes misspeak the word as palpitate).

A good doctor can tell a lot by probing major internal organs this way, as well as getting tactile feedback, i.e. patient response to touch. One of the first Google results I found on the subject describes how you would examine someone with musco-skeletal problems like Chey. You don't have to touch Chey much to tell she is in a lot of pain, yet nobody seems to have tried that.

Of course, pain is a hard thing to quantify. Different people have different tolerances for pain. For example, Chey can pick up hot things that I can't bear to touch. Is she a Spartan? Am I a wimp? Is there a way to evaluate this stuff?

Yes, there are several ways to arrive at a measure of pain, or the effect of pain. Here is the US English version of the 24 point version of the Roland-Morris disability questionnaire from MAPI, an organization that seems to focus on quality of life measurements and standards:
When your back hurts, you may find it difficult to do some of the things you normally do. This list contains some sentences that people have used to describe themselves when they have back pain. When you read them, you may find that some stand out because they describe you today. As you read the list, think of yourself today. When you read a sentence that describes you today, mark the box next to it. If the sentence does not describe you, then leave the space blank and go on to the next one. Remember, only mark the sentence if you are sure that it describes you today.

  1. I stay at home most of the time because of the pain in my back.

  2. I change position frequently to try and make my back comfortable.

  3. I walk more slowly than usual because of the pain in my back.

  4. Because of the pain in my back, I am not doing any of the jobs that I usually do around the house.

  5. Because of the pain in my back, I use a handrail to get upstairs.

  6. Because of the pain in my back, I lie down to rest more often.

  7. Because of the pain in my back, I have to hold on to something to get out of a reclining chair.

  8. Because of the pain in my back, I ask other people to do things for me.

  9. I get dressed more slowly than usual because of the pain in my back.

  10. I only stand up for short periods of time because of the pain in my back.

  11. Because of the pain in my back, I try not to bend or kneel down.

  12. I find it difficult to get out of a chair because of the pain in my back.

  13. My back hurts most of the time.

  14. I find it difficult to turn over in bed because of the pain in my back.

  15. My appetite is not very good because of the pain in my back.

  16. I have trouble putting on my socks (or stockings) because of the pain in my back.

  17. I only walk short distances because of the pain in my back.

  18. I sleep less because of the pain in my back.

  19. Because of the pain in my back, I get dressed with help from someone else.

  20. I sit down for most of the day because of the pain in my back.

  21. I avoid heavy jobs around the house because of the pain in my back.

  22. Because of the pain in my back, I am more irritable and bad tempered with people.

  23. Because of the pain in my back, I go upstairs more slowly than usual.

  24. I stay in bed most of the time because of the pain in my back.

Okay, so Chey's responses to this assessment today are Yes to every question except 19 and I would say 19 is only No because she is stubborn and refuses my help. Note that 20 and 24 are a bit tricky. Does Chey stay in bed all day? No, but she could be said to spend most of the time in bed, and when she gets up and moves to the sofa she mainly reclines on it, she does not really sit on it for long.

If, during this whole ordeal of questioning her need for pain relief, someone had used this assessment on Chey they might have understood how much pain she was in. Of course, they also could have looked at her medical records and the scans that show some pretty brutal spinal anomalies, but hey, what do I know, I'm not a doctor. Or should that be: "Hey, what do I care, I'm just a doctor."

Update: At 5pm I got a call from the patient advocate at Sharp that might be the start of a solution. Will have to see what tomorrow brings.

Day 4 of our medical nightmare: Observations and FAQ

We spent Sunday, June 10, at home in our new apartment surrounded by boxes that have not been unpacked. Spending 3 days in any kind of medical facility will blow a hole in the best laid moving plans. Coming out of the facility in a heap of pain will only make the hole bigger.

Nurse Layla keeps vigilChey is in a lot of pain and spent most of the day in bed asleep with, as you can see on the right, the ever faithful Nurse Layla in attendance. (A few years ago Chey got a type of memory foam mattress that has air pockets to keep it cool.) Chey tried to sit up and read but it was too painful to sit up for long and the Ativan makes it hard for her to concentrate enough to read.

In between unpacking boxes I wanted to get a few more observations down on paper, as it were, and answer some questions that I can hear forming out there. My apologies in advance for any typos.

Q. Was Chey arrested?
A. No.

Q. In what kind of locked facility was Chey held?
A. The Sharp Grossmont facility called Behavioral Health.

Q. Was Chey held on a Section 5150?
A. No. Section 5150 is part of the California Welfare and Institutions Code. Quoting from Wikipedia, 5150 is a section of the Lanterman–Petris–Short Act or "LPS" which "allows a qualified officer or clinician to involuntarily confine a person deemed to have a mental disorder that makes them a danger to him or her self, and/or others and/or gravely disabled."

Q. Why do you say Chey was detained against her will?
A. When Chey was inside the secure medical facility she and I were told that she would be detained for 72 hours under Section 5150 if she did not agree to stay on a "voluntary" basis.

Q. What are some implications of being held on a Section 5150?
A. The federal government is informed of all 5150 holds and you can probably forget your right to own or possess a firearm if you have been 5150'd. You also lose the ability to obtain or retain the  Top Secret (TS/SCI) clearance that Chey needed to work for the NRO.

Q. What was the detaining facility like?
A. It was a clean and modern building located on a beautifully landscaped hospital campus, but with high walls so you couldn't see much of the campus, and the doors were locked and alarmed, meaning the doors could not be opened by anyone but staff and attempts to open them set off a loud alarm. All personal possessions have to be handed over to staff. Prayer beads are not allowed. You would expect many of the people staying at such a facility to have serious behavioral problems.

Q. You say Chey has suffered for years from under-treated chronic pain, how unusual is that?
A. Chronic, under-treated pain afflicts over 100 million Americans.

Q. What is a drug seeker?
A. This is medical code for someone who is judged, at the sole discretion of a nurse or doctor, to be seeking drugs to get high and/or feed an addiction.

Q. Is it drug seeking to ask my doctor to give me something for my pain?
A. That depends on your doctor's opinion. He or she can call it drug seeking if they like.

Q. What about seeking relief for pain while you are in hospital, surely that is okay?
A. When Chey was in the psych ward she was handed a document that said: "When having pain, it is important that you promptly communicate the type of pain you are feeling, its location and the level (zero to 10) so that we can create a plan to treat your pain." Another document stated her right to prompt medical treatment. Chey's attempts to communicate as instructed in this documented were not only ignored, but she was told "We've called your husband so he can tell you to stop bothering us." Chey entered with level 8/9 pain and her pain remained at that level through her departure.

Q. Is Chey a drug seeker?
A. No. She is a pain relief seeker. Chey has no desire to get high. She just wants to control her pain to the point where she can do more than like in bed wincing in agony every time she adjusts her position. Getting enough pain relief to where she could work again would make her very happy, but not high.

Q. What are the implications of being branded a drug seeker?
A. Very few doctors will treat you. You may also lose the ability to obtain or retain the  Top Secret (TS/SCI) clearance that Chey had to have to work in data security for the NRO.

Q. What is a pain contract?
A. Some doctors refuse to prescribe strong pain medicine, regardless of the patient's condition, and without any evidence of drug abuse, unless the patient first signs a "contract" in which the doctor asserts the right to deny further treatment if the patient violates certain clauses.

Q. What is an example of a pain contract clause that a doctor might cite as a reason for denying treatment?
A. "I will not ask for more pain medication than I am currently allowed."

Q. Are you serious, I mean are these pain contracts for real?
A. Very much so. Here's an AMA article: "what is becoming common practice in many pain specialty clinics is using a preprinted, standardized form that says, 'If we're going to treat or prescribe controlled substances to you, these are the conditions under which we'll do so--and sign this document, and if you fail to do so, then we'll fire you from our practice.' "

Q. Did Chey sign a pain contract with a pain specialist?
A. No, she was forced to sign a pain contract by her primary care doctor in San Diego in order to continue the treatment plan she was on in New York.

Q. What is an example of a pain contract?
A. Here's a sample pain contract. Note that there is nothing in the contract for the patient. There is no provision to get more medication if the patient experiences additional pain.

Q. What are some more sample pain contract clauses.
A. These contracts tend to have clauses like: "I agree that I will use my medicine at a rate no greater that the prescribed rate and that use of my medicine at a greater rate will result in my being without medication for a period of time."

Q. Why do you say Chey was forced into an unsupervised "cold turkey" detox?
A. Note that the sample pain contract includes a provision to end the treatment over time. Chey was already out of medication where her doctor refused to provide any more, and no supervised detox was offered.

Q. What other information can I find about pain contracts?
Here's more info from an article on the topic in a medical newsletter: "may require patients to submit to blood or urine drug tests, fill their prescriptions at a single pharmacy or refuse to accept pain medication from any other doctor. If patients don't follow the rules, the agreements often state that doctors may drop them from their practice."

Q. Do all doctors think pain contracts are a good idea?
A. Thankfully no. Here is a good explanation of why pain contracts are bad for patients and doctors.

Q. Are pain contracts legal?
A. I'm not a lawyer but a pain contract hardly fits the normal definition of a contract since there is no choice in the matter. The patient agrees or suffers the consequences, like disabling levels of pain.

Q. The apporach taken by Chey's doctor sounds pretty uncaring, what are some examples of other uncaring things that Sharp Rees-Stealy doctors have said to Chey since she became a Sharp HealthCare patient?
A. 1. Hematologist, consulted for hemochromatosis: "You're wasting my time, I have patients with real diseases to see....have you ever seen a picture of child with leukemia, that's a real disease."
A. 2. Rheumatologist, after cursory examination of patient's hands: You obviously have osteoarthritis, what do you want me to do about it? (Delivered with a tone and attitude that clearly implied "Get out of here you are wasting my time".)
A. 3. Endoscopy doctor, after an endoscopy, speaking to me and Chey: "Don't ever tell your doctor you are bleeding from the rectum again, it's a complete waste of my time."

Day 3 of our San Diego healthcare nightmare

The sad saga of an epic #fail in healthcare continued today. Chey Cobb, the disabled 50-something IT professional, former Senior Technical Security Officer at the NRO and author of Network Security for Dummies, is now home and resting after being placed in a psych ward for 3 days. Her pain is still not managed. She has still not received adequate care. She has not been given any follow-up program, process, plan. Nobody medical has committed to call or help, except one very kind nurse whose powers are limited.

Epic failBefore I get to the day's updates I want to thank all of those in the legal community who took my calls on Friday and the many friends who have reached out via phone, social media, and the inter-tubes.

If there is anyone whose call I have not returned, my apologies. I also want to thank the patient advocate from Jewish Family Services, San Diego, who did his best to kick things up a notch, even though the net result from Sharp HealthCare so far has been "we're sorry we can't do anything for you." So please allow me to recap the facts. This will help me document what went down and add some clarity to the previous posts (Day One is here and Day Two is here).

  • Monday, May 28: Chey calls Sharp Rees-Stealy Medical Center to speak to her primary care doctor (PCD) about increased levels of pain she is experiencing, a matter she had previously discussed with her PCD. The PCD is out for the week. Despite several requests, no replacement or locum calls Chey back.

  • Monday, June 4: Chey is out of pain meds and her PCD refuses to prescribe any more, effectively imposing a cold turkey detox from an 80mg per day oxycodone regimen that had been in effect for about a year, established after extensive tests and consultations in New York, before we moved to San Diego (all fully documented in an envelope full of medical records that Chey handed to her PCD in person).

  • Wednesday, June 6, AM: Chey is finally able to see her PCD who confirms that she is not going to prescribe any more pain medication, despite knowing that Chey has been out of said medication for several days and it will take days if not weeks to switch to a different PCD (who will then refer Chey to a pain specialist for a pain assessment and medication).

  • Wednesday, June 6, PM: Chey's psychiatrist is sympathetic and says he can arrange a pain assessment but only if Chey voluntarily admits herself to the psych ward at Sharp Grossmont Hospital. That proves to be a grueling, humiliating, and physically painful experience for Chey who does not get into a bed in the psych ward until around 4AM (we arrived there at 7:30PM). She receives no medication other than Ativan/lorazepam to help/make her sleep.

  • Thursday, June 7, AM: Chey receives no pain consultation and no pain medication all day. Spends a lot of the day sobbing at the way in which her efforts to live with incurable chronic pain have been crushed. As far as I can tell she is not examined by a doctor (they have her dopey on Ativan).

  • Thursday, June 7, AM: When I visit in the evening she gets 5mg oxycodone. I ask if she can leave, since she is not getting the treatment she was told she would receive, is very unhappy and uncomfortable, and she is there voluntarily. I am told that if she attempts to leave she will be put on a 5150, that's a 72 hour hold that is reported to the federal government and results in the automatic revocation of certain civil rights like firearm ownership and/or possession. I test the doors and yes, they are locked all the time so you can't get out and trying to get out sets off a very loud alarm. Chey agrees to stay another day based on the promise of medical treatment.

  • Friday, June 8, AM: Chey has been without adequate pain relief for going on 5 days and yet the nurses are annoyed that she won't sit up and participate in group. (This is not a medical ward, this is a locked psych ward and some of the people there are pretty scary). Chey hurts too much to sit up, much less go anywhere (there's a reason she's in a wheelchair, walking hurts too much at this point).

  • Based on the advice to patients handed out by the hospital, to "tell your caregivers if you are in pain," Chey tries to tell her caregivers she is in pain. No doctor comes, despite the fact that the right to prompt and medical care and treatment is spelled out deep within the version of the California code that they hand to patients. The promised social worker has not shown up (although we're not sure what the social worker is supposed to do for chronic pain). A nurse tells Chey: "We have called your husband to tell him to make you stop bothering us."

  • Friday, June 8, PM: I get news of this about 1PM. I start calling around for patient advocate lawyers. I go over to Sharp Grossmont in evening and have a phone conversation with Chey's psychiatrist who says Chey is free to leave, but he is still hoping to get a pain consultation for Chey. I get the sense he is dumbfounded by the difficulty of moving the process forward and had no idea Chey would be treated in this way when he extended the offer to help her. Chey and I have a long conversation with the deeply apologetic and very sympathetic head nurse on duty. Chey is given some more oxycodone but nowhere near enough to control her pain. I leave her there for the night in the hope of a pain consultation in the morning.

  • Saturday, June 9: I arrive at Grossmont with Chey's wheelchair about 10:30AM. I find a doctor just leaving, apologizing that he cannot refer Chey to a pain specialist but willing to write a prescription for a low dose of oxycodone. The social worker shows up. Still not sure why since she can't actually do anything to help. It takes about 2 hours to process Chey out of there. Her personal possessions are returned to her from the safe. During the entire time she was there, no doctor touched my wife to see if she was in pain.

There will be more tomorrow. I will explain what a pain contract is and why you, dear reader had better pray you are never presented with one (hint: it is not a contract, you get nothing from it except grief). I will also explain how you can be abused and neglected by medical professionals even when your employer provides you with excellent health benefits.

In closing: There is an organization in San Diego called Sharp Healthcare. It's slogan is: San Diego's Healthcare Leader. The title of the Sharp website home page is "Top San Diego Doctors and Hospitals - Sharp HealthCare." Then there is Sharp Rees-Stealy, a collection of medical centers. The nature of the connection between these Sharp entities seems hard to fathom, for patients and employees alike. Frankly, if that is healthcare leadership, we are all in trouble. If a 50-something professional couple with good health insurance can be kicked to the curb like this, it can happen to anyone.

Our experiences this week have shattered all hopes we harbored that San Diego would be a better place to get healthcare. My wife is faced with living out her days in constant and excruciating pain from which she can get no relief. The events of the past week leave us with no hope of that ever changing.

Day 2 of painful detention in San Diego, the new Cuckoo's Nest nightmare scenario?

As I start writing this, at 3PM Pacific, my wife is still detained in a secure psychiatric facility where they are not only withholding medical treatment, but alternating between ignoring her pleas for help and harassing her with requests to sit up and get out of her room and participate in activities with others.

What part of "I am in too much pain to sit up" the nurses don't understand, I don't know; but San Diego's self-proclaimed healthcare leader, Sharp Rees-Stealy, is crawling lower in my estimation by the hour. The process of engaging an attorney has begun but I am fearful that a Friday afternoon is not a good time to find an attorney and I am also fearful Sharp will force Chey to stay in there until Monday.

As I said in yesterday's post, some of the people staying in the facility seem to be deeply troubled, but heck, I am deeply troubled by what is going on. You get to be a reasonably respectable professional in your late fifties, you probably don't believe it is possible to be treated like this.  Imagine how getting locked up for the weekend in a place that some people refer to as the mad house would impact your answer to the question: Are you considering ending your life?
Helpful Tip: 9 words you should never utter in a medical facility:  I don't want to go on living like this.

Ironically, a medical facility is one place you may feel like saying: I don't want to go on living like this. Unfortunately, if someone on staff hears you say that, you can find yourself on a suicide watch, that is, someone watching you so you don't commit suicide, even if you try to explain that's not what you meant. That's not exactly what happened to my wife this week, but it happened a couple of years ago.

So why would you say:  I don't want to go on living like this? What does "this" represent that could be so bad? If "this" equals suffering chronic pain 7x24 with no hope of relief from that pain, then the sentiment is surely understandable. If you have no way to work or participate in society, if you wince with pain when your partner hugs you, if you're grinding your teeth with pain, and you have no hope of getting adequate pain relief, then "living like this" if frankly not something most people would want to do.

In fact, my wife went on living with inadequately managed pain for years, but through the practical application of her very considerable intelligence, driven by her dogged persistence, she achieved a pain management regimen involving the following:

  • Breathing techniques

  • Dietary changes

  • Meditation

  • Medication

This last item is what her Sharp Rees-Stealy primary care physician cut off, leaving Chey out of pills and, as it turns out, very much out of luck. Here is what she had been taking:

  • 40mg of OxyContin a day (2 x 20mg pills)

  • 40mg of Oxycodone a day (8 x 5mg pills)

These pills have basically the same ingredient but OxyContin is an extended release so she takes one in the morning and one in the evening, then manages "breakthrough pain" with the other pills on an "as needed" basis. To put this in perspective, 40mg pills are not the largest OxyContin pills (it also comes in 60mg and 80mg) and the FDA allows prescription of  up to 640mg per day.

To get back to the nightmare currently unfolding, my wife has been "allowed" just two 5mg tablets of Oxycodone since Monday, one yesterday evening and one this morning. That's 5mg when she had found 80mg was the minimum necessary. And by necessary I mean so she can get out of a bed, sit in a chair, walk a few blocks with the dog, and get back to the chair, lie down and recover.

Update 1: Was able to contact a Patient Advocate through, I am not making this up, Jewish Family Services. He seems to have drawn some high level attention to my wife's situation It is now about 5pm and I am going over to the facility to see what more can be done.

Update 2: Now close to midnight. Just got back from Grossmont Hospital. Chey will be there overnight and coming home tomorrow. Still no pain assessment, still no adequate pain relief, and clearly some serious violations of ethics, protocols, and patient's rights. Tomorrow I will try to lay out the timeline so people can see what happened and how an upstanding citizen suffering from chronic has been treated worse that a convicted drug addict, and still has not received prompt medical care and treatment.

Locked Up in San Diego: Doctors opt for painful detention over treatment of pain

Right now a tale of pain and suffering is unfolding that involves my wife, Chey Cobb, pictured below in happier days. This is a tale so bizarre and unsettling it is hard to believe where it is taking place, not some distant land ruled by cruel forces of oppression and exploitation, but in San Diego County, California, USA.

[caption id="attachment_1575" align="alignright" width="305" caption="Chey and Layla on a good day, before her doctor kicked her off her meds."]Chey and Layla on a good day, before her doctor kicked her off her meds.[/caption]

Even as I write this, the first installment, my wife is locked away against her wishes, spending her second night away from home. Why? Because she asked for pain medication. Surely not? She must have done more than that to warrant detention. I can almost hear the incredulity over the inter-tubes.

Did she lash out in anger? Make threats? No, she did not. She asked her doctor if she could have more pills for her pain and ended up in a locked down facility.

[Update: There are several more posts on this including "Day 2 of painful detention in San Diego" and Day 3 of our San Diego healthcare nightmare. I have answered a number of questions in the Day 4 FAQ. BTW, Sharp HealthCare is the name of the organization to whom the various doctors belong.]
Just so we are clear on the type of person my wife is, she is a highly qualified and well-respected information security professional. The eldest daughter of a Navy pilot who flew carrier-based bombing missions during  the Korean War, my wife has held some of the highest security clearances granted by the American government. She is a wonderful wife and mother. She is almost sixty. She has a great sense of humor (she wrote Network Security for Dummies after working in network security for one of America's top secret spy agencies, get it?).

Apparently, your credentials and character, your demonstrable integrity, don't count for much when you are faced with a doctor who thinks you are lying about your pain to get high and accuses you of "drug seeking" when you say your current prescription is not enough.
Just so we are clear on the type of pain, this is chronic, unrelenting pain we are talking about, pain in the spine, lower back, ankles, knees, hips, wrists, and neck. This is 7x24 pain that fairly consistently runs about 8 on a scale of 1 to 10 if left unmitigated, pain for which doctors say there is no cure. When the pain pills wear off this is gut-wrenching, barely walking, can't climb the stairs unassisted, too painful to sleep so now you have sleep deprivation pain.

Because she is no stranger to pain--she has suffered from migraines since her teens--my wife has learned a lot of pain management techniques, like meditation, special breathing, visualization. Those can reduce the pain a point or two on the scale. But they can't get her down to level 4 or 5, the point at which she can at least walk a block or two, sit upright for several hours, and get some sleep at night. What we know will mitigate her pain to a manageable level is a moderate dose of cheap and well-understood drugs classified as opioids.
Warning! Never ask your doctor for opioids. If you are on opioids, never ask for more, even if your pain levels have increased. The risk? You will be cut off from you pain meds and branded a drug seeker, an addict, a junkie.

What happened to my wife is this: For about six weeks she been experiencing an increase in pain, most likely due to packing ready for our recent move (to another condo/apartment building in San Diego). Chey told her doctor she was not getting enough pain relief and a week ago on Monday Chey called to tell the doctor about it and let her know that she would run out of meds before the prescription was due to be renewed (or she would have to stop all activity and ride out the balance of the 30 days with levels of pain that would prevent sleep). The doctor was on vacation. My wife asked to speak to a different doctor. Nobody returned her calls that week.

Chey's doctor came back from vacation this Monday and was most likely told "Mrs. Cobb has been pestering us for more pills." The doctor finally returned my wife's call that Monday, right in the middle of our apartment move, and told her "I'm cutting you off." My wife was already out of pills and experiencing increased pain. On top of that she was now watching her world crumble. A delicately balanced regimen of pain management that had taken years to put together was about to be smashed. The future, which had finally started to look up, suddenly looked grim. Just how grim we had no idea.

In the next post: How to get yourself locked away and stripped of your possessions, without breaking any laws. Plus tips on avoiding the same painful fate my wife is currently suffering.

Note 1: I am listing this post in the Hemochromatosis category because my wife's pain is very likely related to this condition and I know from my Fighting Hemochromatosis page on Facebook that other hemochromatosis sufferers have struggled to get adequate relief from their chronic pain.

Note 2: I asked my wife if it was okay to write about this situation, even though telling the story will require exposing some very personal facts. Her answer? "Tell them everything you need to if you think it may stop this happening to others."

Seeing Red: Thoughts on selling movies without making money

I recently read the latest accounting statement for Dare Not Walk Alone, the documentary for which I was both a producer and executive producer. You could say I saw red. Let's put it like this: The project remains in debt and there are no indications  that it will ever get out of debt.

DNWA in the redI'm not complaining. There never was a plan to get mega-rich off this movie, but we did hope it would pay for itself and then earn some money that we could put back into the community from which it arose. That did not happen. The people who put money into the movie lost their money, me included.

Ironically, one group of people who "made money" from this project were the TV networks to whom we had to pay thousands of dollars to license news footage, some of which was never shown on TV when it was shot back in 1964. With licensing prices as high as $100 per second for old news, making a documentary about the sixties can get expensive pretty fast.

Having seen the latest spreadsheet from the accountant I feel that I owe aspiring directors and producers some "Lessons Learned" about making indie movies, a sort of payback for one of the non-financial rewards of the project: the openness with which both aspiring and accomplished indie film makers shared their knowledge as we took our fledgling film around the festival circuit.

One lesson you don't learn until you've made the movie and set up retail distribution is that people think offering a movie for sale on DVD or for digital download is the same as selling DVDs. For example, I've had people say to me: "Wow, I see is selling your movie." To which I reply: "No you don't."

What you see is the world's largest online retailer offering Dare Not Walk Alone for sale. That's way different from actually selling any copies. Sure, the movie is out there, for sale or rent, but that does not mean sales or rentals are happening. In fact, 2011 DVD sales for Dare Not Walk Alone, nominated as one of the top documentaries of 2009 by the NAACP, added up to roughly $400. Rentals earned about $40. Add those princely sums together and you get $440 in annual revenue, less than $40 per month, none of which is money in the bank because the initial costs of production and distribution have not yet been paid back. With tens of thousands of dollars in unpaid obligations still on the books you can see the path to profitability is long indeed.

Another lesson is that critical praise is not bankable. People may love your movie. You may get a lot of compliments, some of them in person, some published in the press. All are a pleasure to receive and they are part of what makes a project like this worth doing on a personal level. That does not mean a lot of people will buy your movie, particularly during a recession.

When people ask me where this particular movie project went wrong I tend to skip the hypotheticals--like the famous documentary distributor that signed us up then went bankrupt with our full earnings unpaid, or the pirated copies that may have cut into sales--and go right to the one thing we know for sure: The movie was launched into the teeth of the great recession. I'm convinced that tough economic times crushed the market for a film like ours, a film that stirs troubling emotions and memories, a film in which the feel-good moments are out-numbered by harsh realities, past and present.

The election of President Obama probably didn't help. All of a sudden a lot of people wanted to think that issues of race were settled, but we had a movie about race that is unsettling to watch, whatever race you happen to be. Not a good fit. In all likelihood, most of the people who want a copy of a movie like this have got one already, legally or through some stretching of the concept of copyright.

What advice do I have for people who want to make a documentary? Here are some points that come to mind:

  1. Shoot your own footage. Licensing of archive footage can be hugely expensive (did I mention $100 per second).

  2. Make your own soundtrack. It can cost thousands of dollars to license music for your soundtrack, even if you use lesser known artists (those artists may want to give you a deal but their label may not).

  3. Think long and hard about the market for your film. Avoid napkin-math such as: "We are bound to sell at least 100 DVDs in each of the 50 largest cities and at $10 profit per DVD that = $50,000." Reality does not work like that.

  4. Find a famous person to associate with your project. Giving a named star a producer or narrator credit can make all the difference when you are looking for press coverage.

I'm still glad that I got involved in this project. I'm proud that the film got made and seen at festivals. I'm proud that I helped make it available in the mass market, even though it did not achieve massive sales. And I'm very grateful to everyone who donated time and effort to get the film made and shown.

The film caused a lot of people who saw it question what they had been told about the history of civil rights; it brought the struggles of the sixties into sharp focus for many people to whom they were previously just a chapter in a history book or a few clips of people marching, shown every Martin Luther King Day. I wish people tens of thousands of people had bought DVDs or digital copies. They did not, but I'm still glad the movie was made.

Hotel Travel Tip: More humidity, less luggage, and clean clothes

Here's my tip for alleviating a problem frequently encountered by folks on the road: notoriously dry hotel air. At the same time, this tip offers a way to travel lighter, packing fewer clothes:
Wash your shirts and such in the hotel sink and use the hotel towels to dry the clothes, adding moisture to the air as both towels and clothes dry out.
I used to think it was just me, but lately I have learned that many of my fellow travelers also suffer from the incredibly dry air you find in many in hotel rooms, particularly during the winter. This air often seems intent on totally desiccating hotel occupants.

One way to add moisture to the air is hang damp fabric around the room. So I figured, why not hang damp towels, my washed shirts and, yes, my washed boxers?

[WARNING: Never hang anything from a sprinkler or other fire response/alarm device!]

The damp towels are a by-product of a clothes-drying technique I learned from my wife. So here is my strategy for adding moisture to your room while traveling lighter:
  • Pack a smaller number of shirts than there are days in my trip; 
  • at the end of each day, rinse the shirt your wore that day in the bathroom sink; 
  • wring out the excess water from the shirt;
  • lay a bath towel on the bed;
  • lay the shirt on the bath towel; 
  • roll the shirt up in the towel;
  • then roll it tighter by holding one end of the towel/shirt bundle on the floor with your foot as you continue to twist; 
  • hold that for about 20 seconds and then unroll;
  • straighten out the shirt on a hanger and hang it to dry;
  • Hang the towel, unfolded, on the shower rail. 
Both towel and shirt put moisture into the air during the night as they dry. I rarely get up the next day to find either towels or shirts still damp. (On the other hand, I still feel dry in some hotels, so this is not a cure-all.)

Sometimes there are no convenient places to hang clothes to dry. One spot that can work is the swing out door on the TV cabinet. I found this works better if you put a dry washcloth between the shirt and the wood finish on the door.

Also, I normally travel with an S-shaped piece of coat hanger wire in my bag that works will to adapt hotel hangers when they have the small hooks on them.

But please, do not hang stuff on sprinklers, it is not worth the risk. Last year I stayed at a hotel where some kids had hung wet clothes on a sprinkler head and caused it to, well, sprinkle. Thousands of dollars of damage resulted in their room and on each of the floors below their room, all the way to the lobby where contractors were still peeling back wall paper and inspecting walls to find damage several days after the event.

2,500 Blog Posts and Counting

Stephen CobbThat's 2,500+ blog posts if you count all my posts across all my blogs and those of my employer (ESET). My blogging is now very infosec-oriented, but I'm still spreading the word about the silent genetic killer, hereditary hemochromatosis, on the Celtic Curse blog and the largely-self-sustaining Facebook hemochromatosis page, which now has over 1,750 followers. Of course, all views expressed on are mine and not those of my employer.