I love me some Danielle LaPorte.
Every fucking day. Every fucking day 1-100 sources, individuals, reports tell me and others like me with chronic conditions that come with daily, unrelenting pain that we, the pain sufferers, are The Reason young [and not-so-young, but let’s be honest—only “the young” elicit enough fear and concern] people die from opiate overdoses, that if “doctors” didn’t prescribe opiates to “chronic pain patients” there would be no opiate addiction or overdose deaths anywhere on planet Earth.
The people who fall for that I am tired of being polite and not calling what they are—motherfucking idiots.
Think about it—does it make sense that a woman with rheumatoid arthritis who gets an Oxycodone prescription so that she can reduce her pain enough to work part-time and care for her 2 kids and be a wife, sometimes, to her husband in Maine is the reason “Billy” in Nevada [I made up the state so shut the fuck up] chewed an Oxy and died? Explain that to me. I mean it. Explain that.
I never met Billy, but I knew plenty like him. There is something we like, even admire, about thrill seekers, and Billy was no exception. All of his endeavors were greeted with accolades from those around him, whether he was getting or giving a head injury on the football field, breaking bones BMX bike racing, or whatever else he chose to do. His parents were so proud. The accolades were an elixir, one he longed for, no matter the setting. He was addicted to them. He was never one to back down from a challenge. One day, his friend challenged him with some oxy’s [sic]….He took it. 80 mg. Chewed it for the better high. In short order, he was dead. Technically it was not suicide, but you can only challenge your mortality so long before you lose, and such behavior is suicidal…
It is customary to embellish those we lose. Billy suddenly became a wonderful person, a role model, someone to emulate. Awards were created in his name. The community came together to mourn his loss. His suddenly over-inflated image left no room for fault. Someone was to blame for his demise, and it surely could not be him. Doctors who prescribe pain medication and pain patients who can’t deal [sic] their pain took the fall.
Billy’s parents took to the legislature to exact vengeance….There are few things more motivating than a grieving mother’s wailing, and the legislators were not immune. Soon, laws were being enacted in a vain attempt to “stop the carnage.” …Soon, laws were passed. Addicts still died. Those in pain struggled to find someone with the courage to defy those laws and care…and they died too, but their cries went unheard.
Tale of Two Suicides; Lessons for Opioid Public Policy. David J. Nagel, MD. National Pain Report. 11/23/2015.
Read the whole sad thing before you say one fucking word to me about what you think you might be saying about “opiates” and “addiction.” Then look up the difference between use, abuse, dependence and addiction. They are different words because they are actually different.
FYI: I do not get opiates for my chronic, occasionally debilitating pain. No. I don’t. I am lucky that I get to suffer.
Today is day 2515 of my daily, unremitting chronic pain. I make it look good because I have too many people I love to kill myself.
image: “Deliberation” by Mario S. Nevado
HT: Everyday Feminism.
In 2014, I lost 30+ pounds. Not in any of the right ways. But who gives a shit as long as you are not-fat.
Dr. Travell’s treatment was a comprehensive approach that included analgesics, physical measures, hormone replacement, and attempts to slow down his autoimmune disease (Table 4). Medical records kept by Dr. Travell over the course of her 8-year treatment reveal that JFK was prescribed the following medications: codeine, meperidine, methadone, methylphenidate, meprobamate, barbiturates, liothyronine, gamma globulin, cortisone, testosterone, and procaine injections.1-4
Within about 3 months after starting Dr. Travell’s treatment regimen, JFK’s pain was immensely better and he was back to work as a senator from Massachusetts and planning his run for the presidency….Even more telling that his pain was controlled is the fact that he took dozens of campaign trips between 1955 and 1960. What’s more, he served 1,000 days as president and only missed one day of work. Any pain management specialist today would be proud of this result in such a tragic case.
The 1950 Standards For Pain Treatment
When Dr. Travell’s treatment, and particularly the list of medications, were initially revealed in 2002, there was great angst as many of JFK’s medications are potentially abusable.3 Despite some controversy, his treatment regimen was, in actuality, the forerunner of today’s treatment for intractable centralized pain.3 His medication list is quite similar to the one used today….JFK’s treatment program was not particularly controversial when Dr. Travell initiated it in 1955.
For example, the 1956 Merck Manual33 stated relative to pain treatment: “More severe pain requires the oral or subcutaneous use of codeine, meperidine, methadone, dihydromorphone, metapon, or morphine. The effectiveness of these analgesics often may be enhanced by judicious use of antispasmatics or mild sedatives.”
One thing, however, is very clear to this author. In May 1955, JFK was “down for the count” and “gravesite ready” due to severe centralized intractable pain. When Dr. Travell took charge, the only hope to save him, given her therapeutic options, were methadone and meperidine.33,34
Unless the physician truly has an understanding and expertise in prescribing these opioids, particularly methadone, they are dangerous. In recent years inexperienced physicians have tried to prescribe methadone and are now responsible for an epidemic of overdoses.35 The synthetic opioid has a negative reputation in the minds of some persons because it is used to detoxify or maintain heroin addicts. This is unfortunate because first-class pain specialists often get first-class results with it just as Dr. Travell did with JFK.
John F. Kennedy’s Pain Story: From Autoimmune Disease To Centralized Pain. Forest Tennant, MD, DrPH. 8/31/12.
Kennedy did not have ankylosing spondylitis/AS or an inflammatory arthritis but regardless of the source, the pain was managed so that Kennedy could function. When function and quality of life for the patient are treatment goals, these kinds of things can happen. Maybe there aren’t enough doctors with the “understanding and expertise” to safely use opioids in pain management. What about training? What about allowing those who can and cautioning those who only think they can? Or not assuming all patients are the same, and that that “same” is borderline junkie out to ruin as many professional reputations as possible? There is a difference between use, dependence and abuse. Conflating them all [just like conflating chronic pain patient and criminal addict] doesn’t serve anyone.
At the gym I go to, the time of day I go, I am 15-20 years older than the instructors and 10-20-30 years younger than the [mostly] women in class. And most of them don’t use a cane/walking stick like I do. Getting out of the whirlpool a few weeks ago, I heard behind me, What’s the matter with her? The response: Oh, she’s got a lot of problems, all in her back and more. Then the first one again: Mm-mm-mm, least I was old when I got my problems.
Add to that most of them look at me and think I’m in my 30s.
I hate meeting new or newish people, those who don’t know I’m sick, who haven’t seen the cane or my posts or who last heard I was tenure track and writing and and and and and. It’s not the first but the second or third, “Yes, but what do you do?” that makes me ready to go home. It’s too much to explain:
I have so little of the life I used to have, that I wanted, that I actually needed and worked so hard for.
Even I hate that. It’s not embarrassment. It’s disgust. But if I walked around fully and flamingly disgusted with myself all the time, I wouldn’t be walking around at all.
So what do I do? Make it from hour 1 to hour 6 to hour 10 and do it again the next day. And next week. And next year.
2460 days and counting.
You don’t want the details. You wouldn’t understand anyway.
1. The illness I live with is:
2. I was diagnosed with it in the year:
FM: 2009. AS: 2014.‡
3. But I had symptoms since:
AS: probably early 20s. FM: 2007.º
4. The biggest adjustment I’ve had to make is:
doing a tenth [or less] of what I used to.
5. Most people assume:
because I look okay I must feel okay, that because I bear it “well,” there must not be much wrong or to bear.
6. The hardest parts about mornings are:
2-3 hours of morning stiffness and pain that make it hard to walk, stand up straight, get dressed, stretch like I have to before both get worse, and
waking up tired no matter what.
7. My favorite medical TV show is:
none. I hate the simple formula illness is made into on TV because I know illness is never simple, except from the outside looking in, and I no longer have that luxury.
8. A gadget I couldn’t live without is:
My iPhone. Phone numbers, reminders, texting!, email!, alarms for medications, pain tracking app, pharmacy app, Parkbud [for brain foggy days when I cannot remember where I park], Facebook, Instagram [following photos and people’s joys, yeah], games!, calorie/weight diaries, iTunes,……
9. The hardest part about nights are:
staying asleep through the pain.
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
am a skeptic and do my research [not Google searches or random websites] before I try anything new. If something works for a symptom or relieves the stress of always being in pain, sick, etc., I’ll do it regularly if it is cost-effective. Because though massage may be great for relieving chronic pain, insurance doesn’t cover it, and that shit adds up fast when you have no damn job.
12. If I had to choose between an invisible illness or visible I would choose:
to be well.
13. Regarding working and career:
That’s a wrap. My career and chosen profession [yeah, 2 separate things] both require a lot of sitting, standing, walking, writing, reading, typing, people skills, etc., and that I be coherent and perform at a decent level for hours at a time. I can have a good few hours, maybe half a day if I am very careful and controlled, at a middling level of any kind of performance but for real? What career? What work?
14. People would be surprised to know:
I feel very vulnerable and afraid for the first time ever of aging.
15. The hardest thing to accept about my new reality has been:
the narrowing of my world, activity level and activities, and options.
16. Something I never thought I could do with my illness that I did was:
maintain a daily yoga and meditation practice. But it makes sense that it took life-changing shit to create space for my self.
17. The commercials about my illness:
are full of shit. The few I’ve seen.
18. Something I really miss doing since I was diagnosed is:
walking! I loved to walk—the dog, the Quarter, Jazz Fest, French Quarter Fest, Freret Fest, parade routes, St. Charles, side streets, malls, campuses, everywhere/thing/time.
19. It was really hard to have to give up:
long walks with my dog.
No. What was hardest to give up was writing fiction. working on novels, every day or at least regularly.
20. A new hobby I have taken up since my diagnosis is:
Since my diagnoses started to pile up, I’ve taken up dropping hobbies and activities.
21. If I could have one day of feeling normal again I would:
walk my dog 3 miles and go to an entire second line parade.
22. My illness has taught me:
what’s really important, how to make the tough decisions about what matters enough to keep and pursue through the pain and sickness.
23. Want to know a secret? One thing people say that gets under my skin is:
“Yes, but what do you do?”
As in what’s your job, what do you do all day but watch TV and eat bonbons while your servants fan you with palm motherfucking leaves. People in the U.S. are obsessed with Work and Jobs. It’s inconceivable to live without one and reasons for that are beyond the common imagination.
24. But I love it when people:
say I saunter like a supermodel. Really, I’m just walking like that because of the pain and walking stick and crappy sidewalks and a need to keep my hips mobile [rather than stuck in place].
25. My favorite motto, scripture, quote that gets me through tough times is:
“There is sickness here but I am not sick.”
From Toni Bernhard’s fanfuckingtastic How to Be Sick, p. 38. Which I expand to:
There is pain here but I am not the pain.
There is tiredness here but I am not the tiredness.
There is loneliness here but I am not the loneliness.
26. When someone is diagnosed I’d like to tell them:
Breathe. Focus on what you can do to improve your quality of life now and in the long-term. And forget about fusing. Like shit and death, fusing happens whether you want it to or not so let it go.
27. Something that has surprised me about living with an illness is:
the friends who have expanded and grown to keep, soothe, nurture and love the living hell out of me.
I have not been surprised by the people I lost.
28. The nicest thing someone did for me when I wasn’t feeling well was:
tell me I am beautiful.
29. I’m involved with Invisible Illness Week because:
all this needs to be said, uncovered, de-invisibled. I am sick, I am in pain, I am human, I am here, and I fight hard 24/7. I have no choice but to keep it 100. And I paradoxically want y’all to cut me slack, a lot, and give me credit for the little I can get done or to almost on time.
30. The fact that you read this list makes me feel:
mixed. I was torn about whether to do this at all because exposure, baring myself/my self, is not what I do, and don’t usually do here. But. This is too important. Even if you don’t believe or give a shit about me, maybe you’ll remember a tidbit later when you see someone in a handicapped parking spot or walking slowly, or when a friend cancels again at the last minute or wants to but can’t quite ask if you will, because s/he is flaring or tired or out of spoons for the day, come over and watch Netflx and eat air-popped popcorn, for one movie only. Because, y’know, I got to go to bed early, pills, heating pad, all that, y’know. But…..
I’m too tired, I’m so very tired
and I’m feeling very sick and ill today
but I’m still fond of you*
*The Smiths, of course.
‡OSFED: pfft. Never. Officially. But almost by a psychiatrist because my BMI is acceptable and has never been recorded officially as unacceptable but I report…symptoms and signs.
ºSince high school at least.
Yeah, it’s illness you can’t see. I’ve got one. Well, a few. There are L.O.T.S. A sparse sampling:
allergies and food intolerances
anorexia, bulimia, binge eating disorder, OSFED (Other Specified Feeding and Eating Disorder) and other eating disorders
rheumatoid arthritis/inflammatory arthritis [including ankylosing spondylitis]
chronic fatigue immune dysfunction (CFIDS)/chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME)
fibromyalgia and chronic myofascial pain
depression and mental illness
digestive disorders (IBS, colitis, celiac disease, etc.)
cluster headaches, migraines, etc.
Motor Neurone Disease (MND)/ALS
Louisiana: Women Don’t Need Planned Parenthood. They Have Dentists. Mother Jones, 9/10/15.
The task seems straightforward: Make a list of health care providers that would fill the void if Louisiana succeeded in defunding Planned Parenthood. But the state, which is fighting a court battle to strip the group of hundreds of thousands of dollars in Medicaid funds, is struggling to figure out who would provide poor women with family planning care if not Planned Parenthood.
Nowhere is this struggle more apparent than in a recent declaration by Louisiana’s attorneys that there are 2,000 family planning providers ready to accommodate new patients. A federal judge, reviewing the list in an early September court hearing, found hundreds of entries for specialists such as ophthalmologists; nursing homes caregivers; dentists; ear, nose, and throat doctors; and even cosmetic surgeons.
“It strikes me as extremely odd that you have a dermatologist, an audiologist, a dentist who are billing for family planning services,” said the judge, John deGravelles, who will determine in the next week whether it is legal for the state to end Planned Parenthood’s Medicaid contracts.
No, this is not a joke. This is Gov. Jindal’s LA, a real court case, and a real judge asking, basically, The fuck!?
His harsh questioning sent the state back to the drawing board. On Tuesday, the state’s attorneys acknowledged that the dentists and other specialists didn’t belong on the list. They filed a pared-down version that lists just 29 health care providers.
So there will be hardship if Planned Parenthood clinics across the state are no longer able to provide the health care services they do to the women they do. [I will not add “and families” to somehow soften the idea that this is actually about women and that this thing about women is important because it’s important to women without a backup team or manufactured justification for “you” give a flying fuck.] 29 “health care providers” will provide the “2,100 well-woman exams, 1,200 pap smears,…11,000 STI tests, and…long-lasting contraceptives…to 5,200 patients” that Planned Parenthood did last year in LA? Even if Rep. Cassidy’s unsupported claim there are “more than 100 community health care centers ‘scattered all over the state’ that could accept Planned Parenthood’s patients,” that’s a lot of care to suddenly provide for Medicaid patients, for low-income women, for poor women, many but not all of whom are of color, and most of whom have few other, if any, choices for the kind of respectful care Planned Parenthood provides in this state.
The unspoken part? The opposition to contraception. All forms. And the easiest targets for this ideology are those who have the least representation in a money-takes-and-gets-all not-a-fucking-democracy—the not-rich, the have-least, the non-white, the non-__. Those with money can do what they want and say they are pure, righteous, downright holy if you really ask them. The opposition to contraception is driven by a bushel of myths used as propaganda, including the belief that contraception leads to “risky” sexual behavior, when “risky” is everything that doesn’t result in a high chance of fertilization in a particular context according to a certain religion. [Look up ProLife Action League’s position on birth control yourself. I will not link to such tripe.]
A clear sign that this is about belief and not fact or health care or clinics is the nonsensical resistance in the state’s argument:
So either we’re talking about Medicaid fraud or the attorneys for the state and/or the employees in the state health department don’t understand what “family planning” is. A dermatologist? The fuck!? But this is the right-wing perspective that thinks women’s digestive systems are connected to the uterus, women don’t care about the wage gap, and there’s really no reason to fund “women’s health issues” because. Because? Because they’re women. See?
Like I said: SMWH.
The “Katrina” stories, books, articles, started in July. I’ve ignored most.
One, many aren’t about “Katrina” or about the flooding or what survival here was or still is like or has been like. These “stories” are about using NOLA, a natural and unnatural disaster, and flawed policy to assert a point of view, an alleged lesson or benefit or solution found at the expense of human beings, their lives, children, stability and roots. There’s the “success!” story told about charter schools which is mostly bullshit because the story always was bullshit and not about schools or children or education at all—what happened was about busting up unions, weakening public institutions and preventing talk about desegregation, economic justice, distribution of resources, teacher training and pay and why the students with the most needs get the least experienced teachers and shittiest resources. [Side benefit of dismantling public institutions—crumbling the black educated middle class.] And the story on how NOLA has been improved by the destruction of its housing projects. Guess what? We still have crime. And no, the water did not flush away the problem of black people. We are not problems. We are humans. People. Backbones of what make NOLA what it is. There is no NOLA without us.
Two, there is no Katrina Story. And there’s little acknowledgment that to see what happened and is happening requires a collage, that there are multiple recoveries [and not-quite recoveries], not one Success Story. People like their shit simple but there are multiple NOLAs and multiple ways the flooding and the policy disasters after affected those NOLAs. Narrowing the story to the Ninth Ward, charter schools or the opinions of well-off and privileged white folks hides what needs to be said and revealed.
It sucked. It was scary. I do not think that generation of kids will ever recover, and I’m not just talking about the extremes. We were abandoned, used for political reasons, abused for political reasons, blamed, victimized, blamed again then praised for our resilience and will to survive. As if we had some kind of fucking choice. As if our suffering finally makes us Noble.
And all that will end in September. The fury of activity this year is about the magic number 10. A decade. After a decade, some in the US want to think about that terrible thing that happened to us.
For a while.
Then they’ll be done.
And we still live here. And live with the aftermath of the shit we had to go through to do what other people take for granted and assume is natural—go home. Stay home.
I don’t want to play the 10-year game. This was and is my fucking life, not an interlude. Much of this historical moment will be lost—voices, emails, missives, blogs and posts and links; fear, love, desperation, making do, making our way through whatever came, no matter how many times; the children and students lost and left behind so adults could get better jobs, press, cars; the absolute meanness of trying to throw away people, neighborhoods, histories, pasts and futures.
Go ahead and call me a bitch. Better have. And what changed? Not me.