I didn’t get this written yesterday because the day was filled with Father’s Day. First with my own father (who unfortunately has trouble remembering anything other than, “it isn’t my birthday?”), then with my brother (who had “the best father’s day ever” and the father of my two daughters, my husband.
The two of them started the day “in baseball heaven”, at Fenway Park with their 20 year old daughters (and my brother’s fiancee) watching Barry Bonds hit a homer, and the Sox get another wine, then home to dinner on the deck in beautiful warm weather with all of Jake’s favorite food — fresh pea soup with spicy shrimp, beets in vinaigrette, and a (fresh cherry) cherry cobbler (made by yours truly — which is why it was such a busy day).
Sorry Dad, I didn’t get your favorite brownies baked because I knew I’d collapse. Choices when energy isn’t limitless…
So, I was going to write about this blog about my thoughts during the day, as I struggled to get it all done (as my feet and back became progressively more painful), to stay in a good mood (because what’s the point of doing this as a present if I’m a crank?), to not collapse as my body is emitting a progressively louder silent scream.
But, then I read this article in The New York Times Sunday Magazine , When Is a Pain Doctor a Drug Pusher? Hmm. There’s a connection here, I think.
I live in what could reasonably be called a level 3 of pain all the time, as long as I don’t stand on my feet or walk for too long … or sit or move in funny directions. Then it jumps to a 5 and quickly from there to a 7. (See pain scale in article).
The writer, Tina Rosenberg, focuses the article on a physician who is in jail with a 30 year sentence for what boils down to this: over prescribing pain medication. The doctor’s predicament aside, this story is important to those of us who live in pain as well as those of us who work with people who live in pain because it shows how poorly this condition is understood, not just by the public but medical professionals themselves.
My favorite line in the article: “Contrary to the old saw, pain kills.” I think back to my physical therapist, whom I respect highly for helping me greatly improve a chronic back condition, who said: “It’s just pain.” Which implied to me, “Get over it or get on with it.” In fact, as she clarified later, she meant, “Don’t be afraid of pain. It can get better and it’s not deadly.” But I think that my interpretation is how most of us think about pain. And, pain wears you down – more than we realize and more than we can know because the process is insidious and invisible.
I have a client who takes an “enormous” amount of pain medication (according to most standards), that is prescribed by a well respected pain clinic in New York state, just to get through her enormously busy day. It helps her feel less pain and get through the day but she’s also noticed that among other bad side effects, it’s changed her mood, her responses to others and her behavior.
Ask her, would she prefer the pain to the personality changes, I know she’d say, “NO”. But she recognizes that there are trade offs. What would her life be like if she lived in pain all the time? She knows and it wasn’t pretty. She was on her way to losing her job and needless to say, spending most of her time housebound. Doesn’t she have the right to choose?
But the bias, among professionals, ordinary people, even chronically pained people and the law, exists. Thank you, Tina Rosenberg, for writing about something that matters to us – at least more people will understand that this is a complicated issue without a simple answer that demands a lot more research.
Diana says
I have had experiences related to pain medications with two pain clinics, a psychiatrist, my GI doctor and even a pain doctor from a small clinic in Hawaii on vacation (the buzz was that “everyone” in that small town was hooked on painkillers): Everyone single one of them was happy to give me as much as I wanted. All of these experiences frightened me, and each doctor has his/her own preferences. I still have bottles (and more refills) of vicodin. Now I am trying Dilaudid. Methadone and oxycodone were the worst in terms of side effects. The doctors in my GI clinic voted for giving me a major surgery to deal with my pain, even though the source is unknown!
I did my best to follow the programs recommended. I spent 1-1/2 years experiencing everything from panic and deep self-doubt to severe constipation to shopaholic behavior (and I hate shopping!) to constant hallucinations while awake to spotaneous sleeping (this is how I spilled tea on my laptop) to confusion. Yes, the meds help me function and get to work. And I appreciate that it takes time to find a “solution”, which has to include things other than meds (and this takes a great deal of effort to achieve as well, especially when one’s mind isn’t right). Where am I, what am I doing, who am I? I am moving through my work days as a zombie going through the motions because I know the drill. I have lost all sense of time.
I have 8-9 pain when I am at work regularly, even with the meds. I try my best to keep the activity level down because when I am home on the weekends and sitting still, my pain drops blessedly down to 4-6, punctuated by attacks, but they are easy to handle when I am at home.
Should I be working? That is a question I can only come up with a “yes” answer for. I’ve only been at this for 3 years, maybe with time it will get easier, but maybe it will wear me down. I don’t know. I hold onto hope that something new will work for me.
I know my experience is not unique. My husband reads the forums (I can’t do it because it makes me cry to read about what people are going through). There are many people who can’t get any medication from their doctors; they are told they are “addicts”, that their pain “isn’t that bad.” One poor soul searched through all her clothes, her pocketbooks, her luggage, to find one pill to get her through the day.
What is my point? That things are somewhat out of control in this relatively new field of pain management, and we have to be patient and stay the course. The actions of doctors vary dramatically. As Rosalind has pointed out, we need to educate ourselves and ask questions. I have been searching for a doctor who has a philosophy similar to mine: No more meds, no surgery, keep the job. I found him in Pittsburgh (I live in NY) and I will try an intrathecal pump, which injects the medicine into my spine, so I only need 1/300 of what I am taking orally. And there are other new technologies as well. See, e.g., http://www.medtronic.com/.
If you are someone suffering with pain or the effects of pain meds, don’t accept your situation. It doesn’t necessarily have to be this way. People will argue that it can be expensive to go after so many alternative courses. Yes, it is. But I am willing to take on major debt so that I may be reasonably pain free while I am working and living (the level 5 that most doctors aim for), so that I may one day be myself. Yes, I am willing to pay a great deal to “be myself” again. It is worth more than getting a car, a house, etc. I am almost completely exhausted. I don’t have much fight left in me. Yes, I think pain can kill.