April is Spondylitis Awareness Month

I’m “lucky” enough to be “aware” all the damn time.

And it is enlightening to see how common this “rare” disease is.

What you also can do is look for ways to support those you know with spondyloarthritis, chronic pain and invisible illnesses.

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Bit(ch) 25: “seek out a pain management doctor to get your pain levels under control”

The article‘s fairly good. The focus is rheumatoid arthritis/RA, but I’m used to that. This stopped me cold:

If your rheumatologist won’t prescribe pain medications, seek out a pain management doctor to get your pain levels under control.  And find a good pain management psychologist to help you find the joy in life again.

Yes, I know this isn’t easy.  But it is the path forward.

Not easy? That’s exactly right. But not because I am weak of will or ill-informed or have given up already.

My current insurance doesn’t cover pain management. At all. Medically, pharmacologically, or psychologically. Which is far more than “isn’t easy” unless I have the disposable income to pay out of pocket which is no path forward because the money isn’t there and will not materialize because I’m determined to not be bent double by my chronic pain! [FYI: my previous insurance policies also didn’t cover pain management at all.]

And: when someone says s/he has RA, there’s a good chance the hearer will know RA can be very painful. When you say you have ankylosing spondylitis/AS, you get blankness. Apparently, the only inflammatory arthritises that are considered painful are the ones most people have heard of.

OK, let’s relent and say I have insurance that does cover pain management. The PM physicians in my area, for inflammatory arthritis and other conditions, only administer steroid shots, which can reduce [not eliminate] one source of pain for several months or a few weeks, and maybe radiofrequency ablation. No pills of any kind on any regular basis. It’s not just me either—when a doctor who does prescribe pain medications retires or leaves this area, his or her patients are stuck, and stuck hard because they will struggle to find a doctor who will prescribe the same, half or even a quarter of what the former doctor did. And may not find one.

Pain meds are not the only tool. But they can make an unbearable life bearable at times. Pain relief, not elimination, is about quality of life. My lack of quality of life from chronic pain will not stop a single person from becoming addicted to heroin or stop even my overdose/suicide.

The path isn’t here, and no amount of will on my part will change that. Especially if part of finding that path involves managing/controlling my chronic daily pain through pain management physicians or pain medications.

Day 2598.

I know joy. But not because of pain management.

 

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“an orgy of chaos”

Shamed, dishonoured, wading in blood and dripping with filth, thus capitalist society stands. Not as we usually see it, playing the roles of righteousness, of order, of ethics—but as a roaring beast, as an orgy of chaos, as a pestilential breath, devastating culture and humanity—so it appears in all its hideous nakedness.

The Junius Pamphlet. Rosa Luxemburg. 1916.

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Day 2559: Award-Winning AS Video

Good job but short shrift on the non-spinal symptoms and -itises.

award win AS video 2015

Ankylosing Spondylitis Video Awarded a 2015 Digital Health Award

Ankylosing Spondylitis Video: link

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Bit(ch) 24: That Is IT!!!

Yeah, I’m the fool who subscribes to what’s called the Times-Picayune | nola.com’s news feed. But this is the fucking end for me:

JAN 4 TP feedly crop

I’m used to fucked-up linking pictures with stories but I am now done.

The fuck?!?

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Day 2535: Flares, or Holy !@#$%^&* Shit, Batman!

Chronic illnesses are not necessarily linear, as in Monday is better than Friday [or worse], or 2003 was better than 2013, an up, or down, progression with logical stopping points and an endpoint. Autoimmune diseases especially are prone to fluctuations that may have nothing to do with one’s general health, self-care routines, assistive devices, medications, diet, prayer, exercise or rest. Flares happen. Period. All we chronics can do is make our way through them and try to explain to those who need to know why we are down, down, down.

But of course, when you’re in a flare, it’s hard to do anything but cope and get the very basics done. If you can. I don’t mean grocery shopping but showering, standing long enough to microwave soup and sit long enough to eat it, answering the phone, getting dressed or, fuck!, combing your damn hair.

So what is a flare? For example, ankylosing spondylitis/AS:

Data show that the main symptoms of flare are pain (100% of groups), immobility (90%), fatigue (80%), and emotional symptoms (depression, withdrawal, anger) (75%). There are 2 types of flare: (1) localized: during which the symptoms affect one area; and (2) generalized: this is a severe event including all the above symptoms and a flu-like illness (fever, sweating) with hot, burning joints, muscle spasm, and increased sensitivity. All patients experience between one and 5 localized flares per year. Fifty-five percent of groups contained patients (n = 85) who experienced a generalized flare. The main perceived triggers of flare were stress (80%) and “overdoing it” (50%). Patients reported that a flare may last anywhere from a few days to a few weeks and relief from flare can be gained by analgesic injections (including opiates) from a doctor, relaxation, sleep, and cannabis (3 individuals) [Brophy and Calin].

This exacerbation of usual chronic symptoms and/or recurrence of intermittent symptoms can be mild or extreme, having fatigue at about a level 6, dragging but still able to function some of the time, or fatigue at 10, where you cannot lift your arms off the bed, opening your eyes at all may hurt, you’re too tired to eat even if food were brought to you, and, if pain is part of your chronic condition/illness, your pain feels like…well, you know you won’t die but really, really wish you would, or at least pass out for a few minutes of oblivion, which feels like relief if you look at it slant.

“Minor” flares may not feel so “minor”–a “minor” IBD flare, for example, may mean days of nausea, diarrhea and/or constipation, bloating, and/or vomiting and feels anything but “minor.” A “major,” “generalized,” or “systemic” flare can involve every single system in your body. No food agrees with any part of your digestive tract, no position is comfortable, no pain med or amount of heat/cold gives relief, walking is painful for 3, 4 or 5+ reasons, every move hurts because of a muscle or tendon or inflammation or joint tenderness or headaches. “Minor” is a spectrum. “Major” is beyond the spectrum and is, therefore, more brutal. And they can play tag-team:

One hundred and thirty-four people were followed up for 1216 person follow-up weeks and there were 71.4 flares per 100 person-weeks. Of these, 12 were major/generalized flares and 59.4 were minor/localized flares. People who experienced at least one major/generalized flare during the study period had worse disease during flare-free periods in terms of disease activity, impaired function, self-reported night pain and iritis compared with those who did not experience any major/generalized flares during the study. Major/generalized flares lasted for an average of 2.4 weeks (S.D. 2.7), and were preceded by and followed by a minor/localized flare in 92% (55/60) of cases [Cooksey et al].

I have what I call “localized” flares. Either the costochondritis acts up or the “IBS” or my spine and SI joints or plantar fascitiis and Achilles tendonitis. And/or my wrists. Maybe the localized flare will include 2 things, but usually no more than that. It can take a few days or a week to pull out of it. Which doesn’t mean I’m free of pain/symptoms, just some of the extra pain/inconvenience eases. Maybe I’ll go to the doctor for a steroid shot or a 3-day pack of steroids, especially if it’s the costochondritis–the inflammation and swelling can make productive coughing difficult so I’m at risk for pneumonia, and it’s hard to sleep when I feel like I can’t breathe.

With a localized flare, I can still drive myself to the doctor. A systemic flare? The fatigue is so bad, my thinking so clouded, my limbs so heavy and slow, I’m afraid to drive at all, so I have to be taken to the doctor. A shot of steroids, a 5-day pack of more steroids, shot of extra anti-inflammatory, extra muscle relaxants, a few days [or longer] sticking close to bed except for restorative yoga, bathroom breaks, water, food, entertainment/distraction that I bring back to bed with me. And it will take 1, 2, 4 weeks to, not get better, but get out of the deep systemic flare and back to my usual level of misery and rotating localized flares.

The results suggest that there are differences between the people who experience major flares compared with those who do not. Patients who reported major flares had significantly higher levels of disease activity during flare-free periods than those who did not report any major flares during the study period. The average duration of major/generalized flares was 2.4 weeks….Furthermore, it is possible that those who experience major flares already have more severe underlying disease or are at risk of developing more severe disease in the future. Our study format did not allow us to comment on the pattern of these participants’ disease flares or activity in the years preceding the study period. [Cooksey et al].

My first recognizable AS flare, the one that helped get me diagnosed, went on for months. My GP says she doesn’t think I’ve pulled out of these recurring localized and systemic flares since November 2014. 13 months now.

So I’m always in some kind or degree of flare.

Oh. Joy.

Oh, I tried to forget the fibromyalgia/FM flares. Yes, those are different. A “deep systemic” flare in my definition is usually an AS + FM flare—problems above + blurry vision and/or light sensitivity [squinting behind dark sunglasses even on cloudy days], brain fog [difficulty thinking, making connections, remembering, etc.], headaches, depression [deep, dark, hard-to-move-against-gravity kind of depression], irritability [well duh], IBS, strange nervy pains and pokes and burning sensations all over, even more problems sleeping, a deeper throbbing in the pain. If my normal life feels like 6 on the 0-10 I-want-to-die scale, a localized flare pushes me to 7, 7.5, maybe 8 for a few hours or days, and a systemic flare, especially a “deep” one, starts at 9.5 and peaks at 11. Maybe 12. But if it’s that bad, I take anything I have that helps me sleep or zone out and just…wait. It’s all I can do. It’s what I do a lot of now.

Often a long-enough [whatever that means] AS flare sparks a concurrent FM flare. Or I push myself intellectually, socially, mentally and a FM flare stops me like death. And that flare sets off some localized AS flare(s).

It’s a full-time job.


Brophy, Sinead, and Andrei Calin. “Definition of disease flare in ankylosing spondylitis: the patients’ perspective.” [Abstract] The Journal of Rheumatology, 29.5 (2002): Web. Dec 2 2015. http://www.jrheum.org/content/29/5/954.abstract?ijkey=2dbf76e9ddc9639eb58ec5006eb4efe0fc861d76&keytype2=tf_ipsecsha.

Cooksey, Roxanne, Sinead Brophy, Mike B. Gravenor, Caroline J. Brooks, Claire L. Burrows, and Stefan Siebert. “Frequency and characteristics of disease flares in ankylosing spondylitis. Rheumatology, 49.5 (2009): Web. Dec 2 2015. http://rheumatology.oxfordjournals.org/content/49/5/929.full.

Stone, M. A.,  E. Pomeroy, A. Keat, R. Sengupta, S. Hickey, P. Dieppe, R. Gooberman-Hill, R. Mogg, J. Richardson, and R. D. Inman. “Assessment of the impact of flares in ankylosing spondylitis disease activity using the Flare Illustration.” Rheumatology, 47.8 (2008): Web. Dec 2 2015. http://rheumatology.oxfordjournals.org/content/47/8/1213.abstract?ijkey=1e1617a250c44b7d33b6d8e5b5c8b2bfbee55689&keytype2=tf_ipsecsha.

“Flare ups and burn out.” National Ankylosing Spondylitis Society (NASS) [UK]. December 2015: Web. Dec. 2, 2015. http://nass.co.uk/about-as/just-diagnosed/flare-ups-and-burn-out/.

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Words to Live by

I love me some Danielle LaPorte.

Truthbomb #950

truthbomb 950

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Repeat: Chronic Pain ≠ Opiate/”Drug” Addiction

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.

Yet.


image: “Deliberation” by Mario S. Nevado


Dr. Janet Travell, JFK and 1950s Pain Management

Day 2316: Enthesitis and Peripheral Joint Synovitis

2311

“inflammatory arthritis” + “pain management” = Tylenol?!?

“Allowing people to suffer with unmanaged pain is immoral and unethical”

Chronic Pain Is Not Criminal (Really!); A Better Way to End Addiction No One Wants to Use

“increasingly hostile environment for chronic pain patients and the physicians who strive to treat them

Bit(ch) 15: “They had me on Morphine and OxyContin for a while…”

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“afraid of being full”

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.


“Resource”!

National Eating Disorders Awareness Week 2015

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#OpKKK Press Release, 11-1-2015

 

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