Good job but short shrift on the non-spinal symptoms and -itises.
Ankylosing Spondylitis Video: link
Good job but short shrift on the non-spinal symptoms and -itises.
Ankylosing Spondylitis Video: link
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:
I’m used to fucked-up linking pictures with stories but I am now done.
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, 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/.
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.