The beautiful woman on the right is Jodie, Mrs Twigg, limeyswife. My wife of nearly eight years.
Jodie is a High School Special Education Teacher.
She is special to me in any number of ways, and she lives in constant pain despite the smile she is sharing.
She is not the only one in this awful position, and I have read many accounts of the misery that it brings.
What follows is an account of the effect this condition has on those around such a sufferer. Not from some whiny perspective, but simply in the hope that readers in a similar position might recognize the affects, and take some positive comfort.
It wasn't always like this. I met Jodie on-line, early in 2004. I was an active contributor to an internet support group, and she dropped into my life looking for help with an entirely unrelated matter. One thing led to another, as is so often the case, and here I am, a Brit, living in Oklahoma and daily counting my blessings. She may have come looking for help, but it is I who was saved.
She came to England to visit in August 2004. Indeed, she landed at Gatwick Airport on her birthday. We had been chatting a while and getting together, actually meeting in person, was the logical next step. So I bought her a ticket, and she had the tricky task of explaining to her friends and family that she was, for the first time in her life, upping sticks and flying to England to spend some time with the axe-murderer she had met on the internet.
A small town Oklahoma girl, from a Southern Baptist family, not just breaking the mold but creating her very own EF5 tornado. It did not go down well but she was determined, and her Dad, quietly disapproving, made damn sure she had enough money to be independent and get home if she needed to. He was like that, a good man.
When Jodie arrived, her neck was sore. It was something she had felt before maybe six months previously but we put it down to a very long flight. The pain eased and we had a wonderful week together. She went home, I visited later that year and the rest is history.
Except the pain. It came back, but worse. It came and went for a few months until finally she visited her primary care doctor and heard some bad news. Jodie has a degenerative condition in her c-spine which puts pressure on various nerve bundles, causing pain that varies from "it hurts a lot", to "cut off my fucking head because this is indescribable". More objectively, on the one to ten pain scale it varies between about a two, to about an eight.
Personally, if I stub my toe that is a ten, and from that day forward I have been thankful that I am relatively healthy. Very occasionally I get the odd arthritic pain in my back. It can hurt to breath, almost like you pulled a muscle, and moving is uncomfortable. It's minor, and a couple of Aleve makes it go away. It is not even worth mentioning other than it is the only insight I have into Jodie's daily reality, and even that is trivial by comparison.
At first, the pain was controlled with regular analgesics ... ibuprofen, etc. When they became ineffective her doctor referred her to a Board Certified Pain Management specialist, and he has been a real bonus. He started her on stronger pain killers, and ramped them up until she could manage. The aim being to reduce the pain to a level that helped her simply live normally .... Lots of drugs with Lor, or Oxy in their names. These are all narcotics of various types. Jodie has developed such a tolerance of narcotic drugs that a dosage of heroin large enough to kill an elephant would probably simply leave her feeling mellow.
For a while she was using base pain relief provided by hydrocodone, with "breakthrough" pain relief from a fentanyl "sucker". She looked like Kojak half the time, but with more hair :) These drugs do not come cheap. The suckers were a monthly cost of about $2400, with a co-pay of $65 ... highest tier, non-formulary, special dispensation kind of thing. The hydrocodone... is cheap. The problem with the hydrocodone is that it exceeds the recommended dose of paracetamol for the amount she needed daily, and she likes her liver, so changes had to be made to the regime.
All of this had little impact on her work or family life. There was nothing she couldn't do and apart from the regular doctor visits, and all the co-pays, it was something she could happily live with. Routine drug tests were, and are, pointless. She sets off every alarm bell that the DEA has thought of. We talked a lot about the differences between "addiction" and "dependance". For many people that is an arcane discussion that doesn't mean much. For a pain sufferer it is the difference between a relatively normal life, and no life at all. Jodie is not addicted to narcotics, but she is dependent on them. If she doesn't take them she gets withdrawal symptoms, if she does take them she manages a normal life, or she did for some years. Pain sufferers do not get high, they get pain relief.
Eventually she settled on a combo that worked for about four years. Fentanyl patches and Oxycodone. The patches cost a small fortune each month, and the Oxycodone not so much. I hate to think of the street value of all of those narcotics, but manufacturers of Duragesic are getting rich.
Here is one of the absurdities of the current health care system.
Jodie would happily use generic Fentanyl patches. They are not cheap at around $200 for five, and she uses thirty patches a month. The Duragesic is double that price, it is the "Brand" version. Community Care, her health providor, has a $65 co-pay for either brand or generic, but she gets a $50 coupon for the brand. We have asked Community Care to reduce the co-pay of the generic to $15, but they will not. So we all pay for Jodie to have the branded product, about $2400 per month instead of $1200. Either is expensive, but I feel confident that the premium payers would prefer the lower amount. It makes no sense at all!
Jodie's treatment has morphed through a variety of well-considered options. He doctor is keen that she stay on the drugs all the while they are working, because the alternative is surgery and there are no guarantees that surgery will work. Various surgeries would be options, and they might effect a permanent cure, but the outcomes are uncertain and the surgery is extreme. It will happen, but she is only forty one, so later would be better.
That point is arriving more quickly than she wanted.
The current pain is frequently not allowing her to get through the day. I take her for regular steroid injections, which used to provide relief but seem not to be doing so now, She had a treatment called "Nerve ablation", which could have reduced the need for narcotics, but hasn't in her case.
She is concerned that her children are only getting to know her as the Mom who is asleep a lot. Not because she is drugged, but because the heat pad, and sleep, relieves the pain. So she comes home from work, and sleeps. She has been asking me to look into disability .... Disability! She is in her early forties, her prime in just about every way except for a damaged neck. My wife is an intelligent forty-one-year-old, who loves her job and has so much to give, yet is facing major surgery or not being able to work for much longer.
I ask her, a lot, how she is feeling. I shouldn't, because I know how she is feeling and that in turn simply frustrates me. I get frustrated because I feel so powerless to help. I am a husband and I want to take away the pain, but I can't. She hates to ask me to go to the pharmacy to collect her medication. Hey, it's a fourteen mile motorcycle ride, why would I mind? I don't mind, I'd ride fourteen hundred miles if it made a difference, but I feel bad that she feels bad asking. If you know what I mean.
So I make the trips and, thanks to a Drug Enforcement Agency that needs to be scrapped, I have to provide everything down to my inside leg measurement to get the meds. I do it willingly, and happily, but not happy about the simple fact that minor relief is all that is provided by thousands of dollars worth of drugs.
I guess, in common with many others in this position, I often feel simply helpless to help the person I should be taking care of. Jodie knows that, and she feels guilty on any number of inappropriate levels.
If you are out there and living with a loved one whose life is dominated by pain, I hope there is something in this that helps you understand that you are not on your own. Our side of this bargain is an easy one to keep. The hard bit is watching the hurt in the life of your wife, and not being able to do a damned thing about it.
As a related aside ...
There is a drug that would probably provide substantial relief. It is called cannabis. Jodie once asked her pain management doctor about it. She asked him that were we in a state that allowed the medicinal use of cannabis, is it likely that it would be effective for her. His answer was unequivocal ... "Yes".
Did I mention that we live in Oklahoma? Jodie has to submit to regular drug screenings. Not for the benefit of her doctor, but tests mandated by the DEA. Basically the deal is this. If you need narcotic pain relief, you are a suspected drug dealer until you prove that you are not. No probable cause, not even a reasonable suspicion. If you want to be prescribed the drugs that your doctor feels are necessary, then you have to prove that you have them in your system, because freedom!
This is State sponsored abuse of patients, and it is as intrusive an interference in a persons right to privacy in their health care as any other. Personally, I couldn't care less if the DEA believes that these drugs are traded illegally. That is their problem to solve, not the patients. If they think there is an issue here, it is simply un-American to demand that an innocent population proves their innocence, or be considered guilty.
I have this to say to Oklahoma Legislators, and the Federal Drug Enforcement Agency ...
You are standing in the way of a husband helping his wife experience a reduced amount of pain. That makes you, bodies charged with helping the citizens who elect and appoint you, an enemy of those citizens. That put you directly in between me and Jodie, and that makes you my enemy too. Your actions, and attitudes are borne of ignorance and spite, and are a dereliction of your duty. You are taking a public paycheck under false pretenses, and I will not forget.
There are two reasons that I will not break the law, and neither has anything to do with my general respect for the law. I will not do it because a positive test for cannabis would deprive my wife of the pain relief she needs to live, and deporting me for trafficking would hurt her more than she hurts already.
But you do need to know that the contempt I feel for you is well beyond the level that would be relieved by fentanyl patches, however many you stuck on your sorry asses.