better in tune with the infinite

Jay Electronica

Ibeyi

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“declare an academic crisis…change the definition of a failing school”

A Perfect Storm: The Takeover of New Orleans Public Schools Part One 17 Days in November from N.O. Education Equity Roundtable on Vimeo.

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The Retracted Cowen Institute Report

Not gone and not forgotten thanks to deutsch29: PDF here [and below].

BTW, the Cowen Institute has been cooking its numbers from the beginning.

And read Louisiana Educator’s post “Louisiana Recovery District: Still Failing” on the failures the report and the Cowen Institute and Leslie Jacobs and all the rest have tried to cover up so they can spread this shit-lie across the nation.

The most recent Cowen report has been totally removed from the web site so it is now impossible to analyze it in detail for its distortions, and the Cowen Institute is not eager to discuss the reasons for their retraction. But here are a few key flaws in the report: (1) The report continued to use inaccurate and inflated graduation rates for RSD schools and concluded that many of the schools had “Beat the Odds” in graduating a higher than expected percentage of at-risk students. The truth is that these schools had pushed out the lowest performing students and called many of them transfers so they would not be counted in the calculation of the graduation rate. The LDOE recently reported that the overall graduation rate for the RSD in New Orleans was now a dismal 59.5%. And this does not even count the students forced out before they get to 9th grade. (2) The Cowen study used an inaccurate value added calculation for students which produced the conclusion that even though the at-risk students in the RSD were performing poorly on state tests, they were still doing better than their socioeconomic status would predict. This conclusion is easily discredited when one observes that the report admits that RSD at-risk students on the whole still perform below similar students in our regular public schools across the state. (3) The inclusion of more advanced placement courses in the RSD has demonstrated the utter failure of the charter schools in preparing students for college. The pass rate of only 5% on the AP tests is the lowest in the state. An appallingly low percentage of these students are being adequately prepared for college even though college prep has been the primary stated goal of the RSD charters.

If only 5% are “passing,” which means 3, 4 or 5, the state pays ETS for curricula and books, materials, and tests that 95% of the students don’t benefit enough from, or at all. I’ve scored for AP. Nothing is more heartbreaking than a blank exam book, a kid who couldn’t even try, who sat for almost 3 hours doing nothing after some person or entity paid ETS $91 just for the test. [I blame the adults, not the students.] Or the batches of exam books repeating the same structural and logical errors, clearly taught by someone or something. But when AP courses offered make schools on paper look “rigorous” and “college prep,” the actual results don’t mean much, do they? This “reform” has been fueled by illusion, delusion, and outright fucking lying.

Beating-the-Odds

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hctiB G: The Perpetually Prodigal Daughter

originally posted Sep 15, 2006


I’ve left and returned to NO a few times. I left for college, came back for a while, left to work (not enough, not well, not lucratively or in any truly beneficial way), came back, left again for school, stayed away a while and came back with husband and daughter in tow, a husband who had fallen in love with the city through Jazz Fest and brass bands. I saw the city again showing him and could finally sort the shit from the sweet. And we never thought we’d leave. It wasn’t an option in any way. We’d moved for good.

Until 2006.

It wasn’t just Katrina. It wasn’t just the shredding of universities, a shredding Mister escaped and I got caught in, then taped back together to put in more hard time. It wasn’t just the state of the city post-Katrina. It was abject fear. Fear my job would disappear or, worse, cause more confusion and damage by not disappearing. And the despair. There is nothing like watching someone suffer. It scrapes the insides raw. Watching, listening to, feeling hundreds of thousands of people suffer made me ready to run again. And fury. The despair fuels (at least some of) my anger. There’s still a precocious child in me screeching that shit has got to be fair.

What’s stopping me is that every time I left, NO didn’t leave me. I celebrated Mardi Gras, made beignets, made coffee and chicory that stained cups and spoons, kept Tabasco in the house at all times, cooked red beans and rice (often on Mondays), and always thought of myself as a visitor where I was, not settled, ever, just passing through, sometimes for years. I spent 10 years away and moved every 2 years. There was no home outside of NO.

I wasn’t born here but I am a NO girl. Crape myrtle trees on Broad St., shopping at the Gentilly shopping center and Schweggman’s and Canal Villere; going to Jackson Square on weekends to hear my grandfather’s brass band, and others, play; wandering Jazz Fest talking to European tourists, playing with whomever I found and being fed from the coolers of people who anywhere else at any other time would be strangers. My grandfather taught me to stomp doubloons and beads, too, fingers and all, and if someone else stomped on the beads and wouldn’t let go, he taught me to bend down and break the beads. We shopped at Goudchaux’s and Maison Blanche and Holmes on Canal St. I went to Catholic schools then a magnet school and rode the streetcar and discovered Uptown. I lived near the fairgrounds, in New Orleans East, in Gentilly and knew Algiers and Central City through my grandfather and the other old men he’d sit with. I recall buildings, corners, now-abandoned stores but no street names. It’s not about knowledge of geography or friends or family ties but something visceral. I feel this place and only this place.

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Blow the Whistle: Residents & Officers Raise Voices to End NOPD Retaliation

Monday October 20, 2014 5:30 PM – 7:30PM)
City Council Chambers, 1300 Perdido St.


Blow the Whistle: Residents & Officers Raise Voices to End NOPD Retaliation

From the Office of the Independent Police Monitor (IPM):

What is retaliation? Allegations of retaliation may be classified into two separate categories -retaliation against NOPD employees (“Intradepartmental,” “Internal” or “Whistleblower Retaliation”) and retaliation against members of the public (“Civilian Retaliation”). In both instances, the person may believe they were subject to retaliation for exercising their right to report misconduct, object to misconduct or exercise a constitutional right.

What are the risks of retaliation? Retaliation can be a frightening situation for officers as well as civilians. Civilians can face ramifications such as arrest and delay of public safety services. Officers can face ramifications such as unfair work assignments or having complaints filed against them. Either way the “wall of silence” imposed by retaliation keeps police departments from improving. We need to hear your voice.  Listen to others. Share your story. Support the right to speak the truth without fear.

For further information, please contact Ursula Price at 504-681-3246 or email policemonitor@nolaoig.org.


 

Posted in A Colorblind Society Is Just Blind, Not Just, N.O. brought to you by G B., NO Women | Tagged , , | Leave a comment

Ankylosing Spondylitis

You might wonder why the fuck you’d go to a site called “The G Bitch Spot,” or Bitch anything, to learn about ankylosing spondylitis/AS. So, why? Because I have it. Because I’ve read a good number of pages, blogs, pamphlets, online quizzes, etc. and found most lacking, some appallingly so. Because I like to know and I’ve looked and I feel pretty good about what I found and the weight I give it and the quality information that I can use in conversations with my doctors. Because it’s hard to find good, solid, current information that you really can use and need. But mostly because I can research, read, summarize, and articulate and grandiosely think I got some shit to say about AS and its many tributaries, most involving pain, pain, pain, pain.

And because bad information is the worst thing that can happen to you if you have a chronic illness/condition. Multiply that if it’s invisible.

What is AS?

It is a chronic systemic inflammatory disease that primarily attacks the axial skeleton and adjacent structures. The axial skeleton…consists of 80 bones in the head and trunk of the body, and is divided into five parts: skull, ossicles of the inner ear, hyoid bone of the throat, rib cage, and the vertebral column.

Typically, the vertebrae of the spine become inflamed, causing chronic pain and discomfort. In more severe cases, this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position resulting in a forward-stooped posture. If left untreated, the inflammation of the spinal joints will gradually destroy the cartilage and fibrous tissue of the surrounding structures as well as the ligaments and literally [sic] replace them with bone….

The effects of AS are not confined to the spine. Patients with AS may experience pain and inflammation in other joints, such as hips, shoulders, knees, elbows, and feet. Ankylosing spondylitis may also affect the lungs, eyes, bowel and, in rare cases, the heart [Weisman 5-6].

No, it does not “primarily” affect men 18-35. [About.com: Ankylosing spondylitis: Prevalence of Ankylosing Spondylitis].

The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.

…It is important to know that ankylosing spondylitis is a chronic, or life long disease and that the severity of AS has nothing to do with age or gender. It can be just as severe in women and children as it is in men. [Spondylitis Association of America, Ankylosing Spondylitis]

Women have been traditionally under-diagnosed and, as a result, under-treated. [Actually, AS is generally under-diagnosed and under-treated.] A primary difference found between men’s and women’s symptoms is that women report more “widespread pain,” possibly due to enthesitis, and are often [mis-]diagnosed with fibromyalgia:

Women, however, reported significantly more frequent heel pain, as a manifestation of enthesopathy. The most striking difference between genders, however, was the unexpectedly high prevalence of WP [widespread pain] in women with axial SpA…. the presence of WP correlated with a doubled delay time to diagnosis and, as expected, was accompanied by significantly more frequent neck and chest pain. It should be stressed, however, that the prevalence of other features of axial SpA, such as peripheral joint involvement, uveitis, diarrhea, or enthesopathy was not statistically different between groups of women with and without WP…. Of interest, elevated ESR and/or CRP levels were seen significantly more often in women with axial SpA and WP, and these may have motivated the further investigations which led finally to the diagnosis of SpA. On the other hand, the presence of WP in women with axial SpA may be related to a higher level of systemic inflammation, reflected also in elevated ESR/CRP. To the best of our knowledge, the only published study to look at fibromyalgia in patients with AS, found that 9 of 18 women and 0 of 18 men with AS satisfied the classification criteria for fibromyalgia. While small, that study showed also good correlations between the presence of fibromyalgia and self-reported indices of AS, including bath ankylosing spondylitis disease activity index (BASDAI). This finding, along with the results of the present study, may insinuate that WP (or fibromyalgia), seen frequently in female patients with other inflammatory rheumatic diseases, may also be a frequent phenomenon in women with axial SpA. Its presence may not only confuse physicians and exacerbate diagnostic delays, but may also contribute to women’s worse self-reported functional limitations, as compared to men, at any given level of radiographic damage.

The present study did not reveal specific disease-related features responsible for the delay in diagnosis of axial SpA, except for WP in women. The three groups of patients divided by time from the first disease-related symptom to diagnosis were similar by both clinical presentations of axial SpA and ESR/CRP profile.

Women with axial SpA and WP had almost twice as long a delay time to SpA diagnosis in comparison to women without WP. However, no other disease-related features were found responsible for delay in the diagnosis, suggesting that the physician’s high level of suspicion may be the dominant factor leading to the early diagnosis of axial SpA [Slobodin et al 1079-1080].

[Axial SpA/spondyloarthritis is a more general term used when sacroiliitis may not yet show up in imaging or used for an early stage of AS that usually progresses to a more clearly defined AS.]

All that said, AS can be very idiosyncratic and individual. You may be HLA-B27 positive or not, have psoriasis or not, IBD or not, fusing or not, and it may start in high school, college, your 30s and be diagnosed in high school, college, 20s, 30s, 40s, even 50s. Pain may start in the low back and SI joints or in the cervical spine, as seems to be true for more women than men. Fatigue may be mild or debilitating and change according to flares or weather or exertion or nothing at all. Low-grade fevers are common and can last for days, weeks, months. [I’ve had one for most of the past year.] Anti-TNF drugs and NSAIDs may work well or not at all or for 3, 6, 8 years then not at all, or again after a break. Each day can be a surprise. “Miserable” is a common descriptor. For most people, it’s also “invisible,” unless you’ve experienced fusion and curving in the spine, and severity can’t be based on appearance, unless you’re using a cane, walker or wheelchair. And each of those is a whole different and additional social misery.

The treatment of chronic pain is another fucking mess, even though what most AS people mention first is the fucking pain.

Approximately three-quarters of AS patients experience some type of chronic inflammatory back pain. Scientists hypothesize that the cells involved in the inflammatory process release chemicals that stimulate the nerves surrounding the back bones, creating the sensation of pain. Initially, the pain is dull and intermittent. Over time, the pain becomes more persistent and will localize sometimes to the buttocks area or even in the small spinous processes that stick out of the back. It may also occur in the pelvis at the point where you sit down on a hard surface. One of the characteristics of this pain is that it tends to feel worse during periods of inactivity…with exercise or physical activity resulting in some pain relief [Weisman 27-28.]

Enthesitis…is the main cause of the pain, stiffness, and limited range of motion in the spine experienced by AS patients. Enthesitis often presents as swelling over the inflamed area, with patients reporting that the affected area is tender to the touch upon sitting or when touching selected objects. Sitting on hard surfaces can be extraordinarily difficult for a person with AS if the area covering pelvic bones is inflamed [Weisman 29].

Patients with AS may also experience peripheral joint synovitis, an inflammation of the synovial joints that occurs in about 50% of AS patients, targeting the hips, knees, ankles, fingers, and toes….It appears to affect not only the synovial lining of the joints [as in rheumatoid arthritis] but it also affects the joint capsule, the enthesitis attachments, and even the lining of he bones….it can affect an entire finger [not just the joints] or toe, and sometimes the locations can be just one, two, or three joints around the body in what seems like a random pattern [Weisman 30].

Neither NSAIDs nor anti-TNF drugs have been shown to prevent or stop fusing:

based on the currently available evidence, we cannot stop or retard new bone formation, even with the recent addition of anti-TNF therapy for the treatment of AS. Studies have shown that over a 2-year period, anti-TNF therapy did not stop the radiographic progression of AS [Weisman 101].

I’ll repeat: Neither NSAIDs nor anti-TNF drugs have been shown to prevent or stop fusing. Fusing happens, period. But

There are no known factors that influence the severity of spinal inflammation or the rate of progression of spinal ankylosis, although we do know that functional disability occurs more quickly in older patients and smokers, and less quickly in patients who do back exercises on a regular basis and have better social support structures [Weisman 97-98].

Getting diagnosed can be hard if you don’t have clear markers like HLA-B27 or MRI evidence of sacroiliitis. But since 2011, the experts have pushed for earlier diagnosis, not waiting until fusion occurs or the symptoms so obvious your kid could diagnose you through WebMD. It doesn’t have to take 8-11 years to be diagnosed and finally treated for at least some of your symptoms. But it often does. So hang on. And keep making noise to get what you need.

After diagnosis? The best recommendations:


Table 1 List of recommendations for the behaviour of patients with AS and for adaptation of their living and working environment (partially shortened) based on the systematic literature research

1. General
Maintain a proper posture at work, at leisure and when sleeping 
Avoid overtiring yourself and avoid becoming overweight
Avoid smoking 
Maintain a good attitude and try to be cheerful 

2. Sitting position
Your chair should have a plain and firm surface. Avoid sitting for prolonged periods, especially in low soft sofas or on surfaces that slope backwards 
An inclined table or a drafting table with tilting work surface facilitates reading in an upright position … 

3. Walking
Use large enough steps to prevent limitation of your hip joint extension 
Use shoes with elastic heels instead of walking with bent knees to absorb shocks from walking on hard surfaces 

4. Sleeping
Use a firm flat bed to maintain a good sleeping position at night … 
Make a habit of preferably sleeping on your back to prevent your hip joints and your back from becoming bent 
Try to lie on your front some time before sleeping and before rising in the morning 
Avoid using a pillow if possible, or use one just thick enough to allow a horizontal position of your face … 
Avoid a bolster or pillow which reaches under the shoulders and thus forces your thoracic spine into a bent position 
Avoid a pillow under your knees because this will increase the tendency of muscles and tendons to shorten 

5. At work
A dry and draught-free working place is desirable for patients with AS 
Examine your posture at work and modify your working environment if necessary to maintain a good posture 
Avoid prolonged stooping or bending and physical activity that places prolonged strain on your back and neck 
Organise your work in a way that you can alternate between sitting, standing and walking 
Occupations associated with extended bending, twisting, stretching or body vibrations are unfavourable for patients with AS 
During your lunch break at work, lie flat for a few minutes. Try to lie face down on your stomach for part of the time 

6. Exercises
Daily exercises are an important part of treatment for ankylosing spondylitis 
Perform appropriate muscle-strengthening and mobility exercises regularly, as advised by your doctor 
Do deep breathing exercises at frequent intervals during the day, with especial regard to thoracic breathing 
Exercises with machines that enhance back, leg and shoulder extension are helpful, but avoid undue stress on the neck 
If you are in a flare and your joints are painful and stiff, carry out range-of-movement exercises within your pain-free limits 

7. Sports and recreational activities
Physical activity is important for patients with AS 
Which sports are suited depends on the state of your disease and on whether or not you are already well trained in this sport … 
Physical activities that encourage good posture as well as extending and rotating the trunk are recommended … 
Sporting activities that require prolonged spinal flexion (as in golfing, bowling, long-distance cycling) may be inadvisable 
Sports with greater potential for injury (as boxing, football, etc.) and downhill skiing are also not recommended 
Proper breathing techniques are also accomplished by singing or playing a musical wind instrument that requires a large lung capacity. The traverse flute and violin are not suited to patients with AS because of the unfavourable neck position … 

8. Diet
A dietary regimen with only two meals with red meat and two fish meals per week is recommended for patients with AS … 
Individual nutrient sensitivities or intolerances may also play a role and have to be considered individually … 
Sufficient Vitamin D and calcium intake are important to prevent osteoporosis 

9. Sexuality and pregnancy
With a considerate partner, AS should not severely interfere with lovemaking in most cases. If, however, you are having a flare or problems with your hips, you may need to experiment to find comfortable and satisfying positions … 
The probability that children of patients with AS will develop the disease is estimated at 5–15 %
This is, however, not a reason that patients with AS should not have children 
Fertility, pregnancy and childbirth are usually not a problem in AS 
Even women with sacroiliac joint fusion or hip joint replacement usually do not require a caesarean section 
Wherever possible, drugs should be avoided during pregnancy 
If you are taking methotrexate, strict conception control has to be undertaken. For TNF-blocking drugs, it is sufficient to discontinue the treatment as soon as a pregnancy is assessed, according to the present state of experience 
To compensate for not taking medication, try to increase your exercise programme … 

10. Car driving
If you have impaired mobility of the neck, special wide-view mirrors fitted to the car can be very helpful … 
Use seat belts and head restraints. Remember that the stiff neck of an AS patient is more vulnerable to injury … 
If the seat is uncomfortable in a rented car, a small cushion behind your back may be helpful 
Stop after an hour or two and get out of the car to stretch your back and walk around for a few minutes 
Carry an emergency information card that you can show to first-responders to make them aware of your diagnosis and the special needs to be taken in connection with positioning, transportation and intubation for artificial respiration 

11. Fall prevention
Always wear a good pair of skid-resistant shoes 
In winter, if there is ice, shoes with fold-out spikes are helpful 
Use grab rails/well-shaped banisters when going down stairs 
A shower stall is safer than a bath tub. If a bath tub must be used, use a bath board/mat to avoid slipping, and use suitably placed grab bars 
Avoid slippery surfaces and loose carpets 
Use floor lighting at night 

12. Advantages of membership in a disease-specific patient organisation 
Reliable information on the disease and on living with it
Exchange of experiences among patients with different disease durations
Supervised evening therapy groups organised throughout the country
Common social activities and suitable sports
Overcoming social isolation of patients
Advice in social and medical problems associated with the condition
Common representation of the interests of the patients in society, the law, and the health service [Feldtkeller et al, 2344-2345]


Table 2 Final core set of recommendations concerning AS patient behaviour and adaptation of their living and work environment—to be delivered to AS patients early in the disease course, for instance in connection with the diagnosis

General statement: Ankylosing spondylitis is an inflammatory rheumatic disease which may lead to stiffening of the spine. The course of the disease is highly variable and effective treatment options are available. AS is not a malignant disease. Most patients with this disease can have an almost normal life and can successfully practice in their profession

The following recommendations will help you to reduce fears you may have regarding the disease, and help you to contribute to a favourable disease course by appropriate behaviour and adaptation of your living and work environment

1. Basic principle: Maintain a proper posture at work, at leisure and when sleeping

2. Sitting position: Take care to keep a hollow back while sitting. To achieve this, a firm and plain sitting surface is better suited than a low soft sofa or a backwards sloping surface

3. Walking: Use sufficiently long steps (like in Nordic walking) to maintain hip joint extension. Well-fitted shoes with shock absorbing heels and flexible soles facilitate pain-free walking

4. Sleeping: Try to sleep preferably on your back for an optimal extension of your back and hip joints.
Sleeping with your upper body elevated on a large and thick pillow, which forces your thoracic spine into a flexed position, is not recommended. Use a sufficiently high-quality mattress and firm frame

5. At work: Try to change positions between sitting, standing and walking at work, and take care to maintain a proper posture for your back.
When choosing your profession, take into consideration that occupations connected with strong bending, twisting, stretching and body vibrations are not recommended for patients with ankylosing spondylitis

6. Exercises: Daily disease-specific exercises are an essential part of the therapy of ankylosing spondylitis.
Perform deep breathing exercises with pronounced thoracic breathing several times per day

7. Sports and recreational activities: It is important for patients with ankylosing spondylitis to remain physically active. Sports activities are the best way to attain physical conditioning, to stabilize blood pressure and heart rate, and to improve lung function capacity. Sports activities, however, are no substitute for disease-specific exercises. Which kind of sports is especially suited for you depends on the state of your disease and on whether you are already experienced in this type of sport or a beginner. Sports connected
with a straight posture and stretching of the trunk (Nordic walking, hiking, swimming, cross-country skiing, tennis, badminton, archery, volleyball) are especially recommended

8. Diet and life style: A diet with less meat (less arachidonic acid), more fish (omega-3 fatty acid) and vegetarian meals may contribute to reducing inflammatory processes
Do not smoke because smoking has a proven negative influence on the course of the disease
Ankylosing spondylitis is often associated with osteoporosis. Therefore, a balanced calcium intake via food and sufficient vitamin D supplementation (sun exposure, fish diet, also vitamin D tablets, if necessary) are essential

9. Sexuality and pregnancy: Severe restrictions or limitations in love life should not occur in most cases with sensible and considerate interaction of the partners. Experimentation may be required in order to find pain-free and satisfying positions. Talk to your partner about the situation in order to avoid misunderstandings. Openness and impartiality contribute to a fulfilling sexual life
Fertility, pregnancy and giving childbirth normally do not constitute a problem in ankylosing spondylitis.
Even with fused sacroiliac joints or artificial hip joints a caesarean section is usually not required
Discuss the use of medicines during pregnancy and breastfeeding with your doctor

10. Advantages of membership in an AS-specific patient organisation: Reliable information on the disease and on living with it, including patient education courses; exchange of experiences among patients with different disease durations; professionally supervised local AS-specific group physiotherapy; common sports and social activities; overcoming impending social isolation; advice in medical questions and social law; representation of patient interests in insurance and legislation [Feldtkeller et al, 2346]


And now, Let’s Get Real: this shit, AS, sucks. Every day. Pain. Fatigue. More pain. Spine, cervical, thoracic, lumbar. Ribs. Shoulders. Elbows. Knees. Hips. Legs. Feet and toes. Heels. Ankles. There will be brief clearings of some of the worst of the gloom but that will depend on the day, hour, barometric pressure, what you ate last week, the last thought that went through your head, or nothing at all. As stressful as AS is, stress makes flares worse, or triggers them. You can’t not move, you have to move, and you’re fatigued, sometimes to the point of, and I’ve been here, resting between putting on articles of clothing, or hoping you can make it through a 3-minute shower, feeling pinned down by the arms, head and chest. You’ll lose friends. Possibly a job or profession or what you trained for a decade or so to do. Houses. Some lose their spouses/partners. Some partners/spouses are so difficult—it’s in your head, you just need to __, I do not believe this AS junk, etc.—you wish they’d leave you. You will feel like several kinds of shit and not just physically, which is bad enough:

Feelings of guilt and embarrassment. Because we’re repeatedly told that we look and sound fine, many of us begin to think it’s our fault that we’re sick or in pain. We must be doing something wrong. The culture around us reinforces this notion. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy….

For many years, I felt guilty and embarrassed that I wasn’t living up to the cultural norm: guilty in the sense that I thought I was doing something wrong by failing in my obligation to others and to myself to get better; embarrassed in the sense that I was judging myself negatively for not living up to what I perceived to be others’ expectations of me.

People will think, and say, all kinds of stupid shit about and to you:

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness. 

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.

You will be depressed. Don’t lie to yourself—this kind of shit just is depressing, it’s not you, it’s just what it is, the way it is, how it flows. Learn some tricks of the trade and stay aware; those of us with chronic pain/illness are much more likely to commit suicide, and don’t be afraid on those days when death seems like the compassionate option to talk to somebody [National Suicide Prevention Lifeline at 1-800-273-8255, BFF, parent, therapist, the Samaritans at 1-800-273-TALK, etc.].

Mostly, it is isolating to be in chronic pain, and/or always be tired, and/or have trouble talking because you are so worn out just getting from bed to shower to dressed to breakfast to the sofa. People will say they understand but show with their behavior that they absolutely do not understand. Some people will surprise you and change, step up to the plate, smile. Most fucking won’t so don’t expect them to. Find people who do. You can find online support groups online and in Facebook. Search “ankylosing spondylitis.” Almost anyone with a chronic illness/condition will understand aspects of the chronic experience. A little understanding goes a very long way when you are this kind of alone.

If you’re lucky, you’ll be in either a medical marijuana state or a state, not mine, where you can get treatment for chronic pain.

You’ll feel betrayed by your first and best companion, your body. But you’ll be okay. Just different.



Additional references:

Bernhard, T. The Challenges of Living with Invisible Pain or Illness. Psychology Today, 28 Sep 2011. Web.

—. The Extra Burdens Faced by Young People with Chronic IllnessPsychology Today, 4 March 2014. Web.

—. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Somerville, MA: Wisdom Publications, 2010. Print.

Braun, J, et al. “2010 update of the ASAS/EULAR recommendations for the management of ankylosing spondylitis.” Annals of the Rheumatic Diseases 70 (2011): 896–904. Academic Search Complete. Web.

Brophy, Sinead, et al. “Fatigue in Ankylosing Spondylitis: Treatment Should Focus on Pain Management.” Seminars in Arthritis and Rheumatism 42 (2013): 361-367. Academic Search Complete. Web.

Canadian Consortium for the Investigation of Cannabinoids. Viewpoints in Pain Management: Cannabinoids: Cannabinoids in Pain Management: An Update from the 2009 Canadian Pain Society Meeting, Quebec QCPDF. Web.

Caudill, Margaret. Managing Pain Before It Manages You. 3d ed. New York: Guilford, 2009. Print.

Davies, Helen, et al. “Patient perspectives of managing fatigue in Ankylosing Spondylitis, and views on potential interventions: a qualitative study.” BMC Musculoskeletal Disorders 14 (2013):163. Web.

Feldtkeller, Ernst, Gudrun Lind-Albrecht, and Martin Rudwaleit. “Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.” Rheumatology International 33.9 (2013): 2343–2349. Academic Search Complete. Web.

Hill, Hilary, Alan G. S. Hill, and Julia G. Bodmer. “Clinical diagnosis of ankylosing spondylitis in women and relation to presence of HLA-B27.” Annals of the Rheumatic Diseases 35 (1976): 267-270. Academic Search Complete. Web.

Lorig, Kate, and James Fries. The Arthritis Helpbook: A Tested Self-Management Program for Coping with Arthritis and Fibromyalgia. Cambridge, MA: Da Capo, 2006. Print.

Lynch, Mary, and Fiona Campbell. “Cannabinoids for treatment of chronic non-cancer pain; a systematic review of randomized trials.” British Journal of Clinical Pharmacology 72:5 (2011): 735–744. Academic Search Complete. Web.

O’Shea, Finbar, David Salonen, and Robert Inman. “Editorial: The Challenge of Early Diagnosis in Ankylosing Spondylitis.” Journal of Rheumatology 34.1 (2007): 5-7. Web.

Poddubnyy, Denis. “Improving Diagnosis of Ankylosing Spondylitis and Spondyloarthritis in General.” International Journal of Clinical Rheumatology 6.6 (2011): 655-668. Medscape. Web.

Prokopy, Jenni. AWAP Wednesday: Invisible Illness Week & Suicide Awareness. Chronicbabe.com, 10 Sep 2014. Web.

Reveille, J. “Epidemiology of Spondyloarthritis in North America.” American Journal of the Medical Sciences 341.4 (2011): 284–286. National Center for Biotechnology Information, U.S. National Library of Medicine. Web.

Slobodin, Gleb, et al. “Recently diagnosed axial spondyloarthritis: gender differences and factors related to delay in diagnosis.” Clinical Rheumatology 30 (2011): 1075–1080. Academic Search Complete. Web.

van der Horst-Bruinsma, Irene, et al. “Female patients with ankylosing spondylitis: analysis of the impact of gender across treatment studies.” Annals of the Rheumatic Diseases 72.7 (2013): 1221-1224. Academic Search Complete. Web.

Ware, Mark, et al. “Cannabis use for chronic non-cancer pain: results of a prospective survey.” Pain 102 (2003): 211–216. Academic Search Complete. Web.

Weisman, M. Ankylosing Spondylitis. Oxford: Oxford UP, 2011. Print.

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“when I read you the Constitution in a second”

 

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“Resource”!

[Director] Lauren [Greenfield] doesn’t shy away from what is really going on in these womens’ [sic] lives. As viewers, we’re shown an insider’s perspective of what life is like at an in-patient clinic: the weigh-ins and vitals, the meals, the “resource” shakes given to the girls when they aren’t gaining weight, the therapy sessions, the family therapy sessions, the community meetings, the nutritionist meetings, the profound impact the diseases have on their families who feel so helpless, the girly antics in their bedrooms that make us giggle, the friendships and alliances … and the mistrust among staff and the community.

THIN: The HBO Documentary. Let There Be Light, 1/9/09.

Thin preview at Lauren Greenfield Photography

——

I forgot to eat one day last week. Or 2. And the week before I forgot at least twice, maybe 3 times.

When I was in high school, my mother said to me once with all seriousness, over a can of green beans, That is not food for you to eat, how dare you eat that food. I think her position was that it was hurricane food. I started smoking that year.

When Mister and I were first dating, he called after dark to ask if I’d had dinner. My answer? Dinner? Wait, did I eat today? If I were busy reading or writing or staring at the moon, I’d smoke a cigarette and intend to eat later. And forget. Mister’s solution was to show up at my apartment with a bag of groceries.

Then I learned how to eat. Mostly. I still forgot sometimes. I’d get annoyed with myself for getting hungry in the afternoon when I didn’t think I should be hungry. A therapist introduced me to something she assured me humans had been doing for some time: the afternoon snack. A fucking revelation.

Emily Tan: THIN – “If it takes dying to get there, then so be it.”–Alisa’s drawing: black outline = perception, red outline = reality.

I used to be, back then, Thin. I didn’t think I was. I didn’t own a scale and judged my weight by how many ribs and bones were visible, the deep depressions in my collarbones. I avoided photographs. But because I had “thick” thighs and broad shoulders and a round face, no one suspected, I thought, that I looked for my ribs and panicked if my hip bones weren’t sharp. I could chow through 2 entrees at dinner because I probably hadn’t eaten that day, or much for 2 days, and/or wouldn’t eat again for at least a day. Kind of like a snake.

I wasn’t stupid though. I knew when I got pregnant that I was technically underweight and therefore could be considered high-risk and in need of concerted medical intervention which I was not in my plans. Ever. When I went for my first prenatal appointment I’d gotten up to almost 130lb. At 5’9″. Just enough.

I ate. And ate. Gained. Lost. Gained. Lost. Then started feeling not-well and gained. A little more. Then to me a ridiculous amount.

Then the sickness turned and for the first time in years, I lost my appetite during certain flares for a day, 4, a couple weeks. I’d force down a meal and a half a day because I had to. I found things to do other than eat. And slowly slid into forgetting to eat, and even more slowly learned why I could do that and so well.

It’s not really an eating disorder.

Do I judge others by unreasonable standards? No. Just myself. Every line, spot, pore, dimple of cellulite, hangnail, lump, jiggle. Does ___ need to lose weight because I cannot see her hip bones? Hell no. What kind of crazy shit is that? But I resented my hip bones for locking me into a size 8, never able to get to a 6 or 4. I called myself fat with no awareness of irony or sickness. Who gets discouraged for being thin? Who says, You’re too skinny; eat this ice cream? To a woman? You have to be skeletal, unable to stand, suicidal, with lanugo and low blood pressure to be told you’ve gone too far and that depends on where you are. [For example, “yogarexia.”] Models are thin. Actresses are thin. Newscasters are thin. Fat is Bad, Thin is Good unless you’re too thin which means you must be “messed up.” I weighed around 120-125 pounds from sophomore year in undergrad until 29 and then at a few points after. In my drinking year-and-a-half in Chicago, I got most of my calories from alcohol. I had snacks instead of meals. If I went out to dinner, I filled up and might not eat for 1-2 days after, which no one knew because no one asked. No one in the late 80s-90s questioned if a woman, young, was thin. What the fuck else should/could she be?

I started dieting this year. That got dangerous in about 2 weeks. If I got to the end of the day and my app said I’d only net 400 calories or warned me that I was Not Getting Enough Calories! I felt satisfied, accomplished, in control. Each ounce gained was confirmation I couldn’t/can’t do shit right and cannot possibly have an ED. But it’s become clear I have some (more?) of that disordered thinking.

I get to 3p and realize I forgot to eat again and Resource myself like the borderline anorexic I will never not quite be.

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hctiB G: I Survived…I Survived…I Survived…

Originally posted Jul 1, 2011
Lifetime TV bought I Survived and that seems to be the end of it. All the Biography/I Survived links are dead.
—–
Bear attacks. Shootings. Stabbings. Airplane crashes. Rapes. A lot of rapes. Kidnappings and hostage situations. Random violence and planned lunacy or evil. Horrific child abductions. Serial killers. Leftist guerillas. I am addicted to “I Survived…” on Biography, sneaking in bits and chunks and back-to-back episodes when no one else is home. I call attackers “animals” outloud and curse them and cheer survivors and marvel that the man who survives a bear attack mourns the bear being killed “for safety reasons.” I cringe as women, in various states of physical distress and injury, do anything to save their children or quietly acquiesce to evil to stall for time, think a way out, or just not die right away. The common threads—I survived because I didn’t want my parents to have to bury me, I survived because God had a different plan for me/knew my work on earth wasn’t done, I survived because I stayed calm and alert, I survived because I didn’t want to die there, I survived because I didn’t want him/them/to win, I survived…I don’t know why, I just did.

I was up for Mac McClelland’s “How Violent Sex Helped Ease My PTSD.” And I understand why it works even as I try, days later, not to think too deeply about paragraphs 27-29. In the second-hand trauma of so much death and brutality, McClelland had no way to process it for herself because of its second-hand nature. So it caught up with her, in ways that New Orleanians may recognize, though at a much higher pitch for McClelland: insomnia, drinking, crying, dissociation, anxiety, nightmares, easy to startle, numbness, and more.

“Trauma” gets thrown around a lot. Here, I mean what Peter Levine explains [more Levine below]:

…trauma is something that overwhelms us, that makes us feel helpless, that makes us feel paralyzed. And it’s something that happens to our bodies and our brains, something that happens to our nervous system, to our whole organism, that doesn’t un-happen; …leading to feelings of overwhelming helplessness….we mobilize a tremendous amount of energy. This is the so-called fight or flight response. And there’s another response that occurs when we are overwhelmed beyond the fight or flight response, and that’s the freezing, numbness, shutdown.

Processing trauma is also a physical phenomenon, not just mental, spiritual, psychologically, whatever you want to name it. When the physical/somatic reaction is blocked, the stress accumulates and strains the body, not just the spirit: [Note: the link below is in flux and no longer links directly to the quoted text below]

When the charging (sympathetic) phase is followed by a parasympathetic discharge of equal magnitude, then pre-activation homeostasis is reestablished and the stress is said to be resolved. On the other hand, it is shown that under certain physiologic conditions (and behaviorally where mobilization–i,e., somatic response to stress–is blocked), the charge phase is no longer balanced by rebound. In these cases activation is not resolved and the stress becomes incorporated within the organism, as a diminished adaptational capacity.

In an interview with Tami Simon, he explains:

But if people have to live in a whole environment, a climate of stress—for example, a child that’s born into a family where there’s a lot of alcoholism and/or yelling at each other, or tremendous tension. Well, the children pick that up, and this is an ongoing stress…if this goes on for a long period of time, it really erodes our sense of self and our resilience.

I realized also that the part of the brain that’s affected by threat, by stress, is the same part of the brain that we share with all mammals. Yet animals—in the wild, that is—don’t develop trauma symptoms. In other words, if a rabbit is chased down by a coyote and it escapes, he’s none the worse for the wear. Because if animals didn’t have that innate capacity to rebound from these threatening encounters, number one, they wouldn’t survive, because the next time they would be slowed down, they wouldn’t be as effective in evading a predator, and they would be eaten. So not only would the individual rabbit die, but soon the whole species would become extinct. So I reason that there had to be really robust innate mechanisms both in animals and in humans that take us through our encounters with extreme threat. And what I discovered was that animals and people have this innate capacity to shake off the threat and come back to equilibrium.

And that’s how Isaac helped McClelland through the somatic stress and allowed her to express it and not, in that instance, develop PTSD and also, whether he or she knew or not, discharge some of the trapped, pent-up, overstimulation of her secondary trauma:

After he climbed off me, he gathered me up in his arms. I broke into a thousand pieces on his chest, sobbing so hard that my ribs felt like they were coming loose.

Not only did she need to survive, she needed that survival validated:

Isaac pulled my hair away from my wet face, repeating over and over and over something that he probably believed but that I had to relearn. “You are so strong,” he said. “You are so strong. You are so strong.”

In a phone session, McClelland’s therapist tells her:

“Being aware and understanding what’s going on in your system and then literally working it through your body, like retraining your body how to calm down, is really useful,” Meredith says. For many of her trauma patients, it’s a long and intense process. And if it goes untreated? “A lot of people don’t heal, and it manifests in a lot of different ways throughout their lives. There’s a study they did with Vietnam vets who’d had—clearly—a lot of trauma during the war. Twenty years later, they measured their levels of pain before and after they showed them intense footage from Vietnam. Pretty much across the board, after they saw this really intense, violent footage from the war, their levels of pain went down. Because when trauma doesn’t get to work itself through your system, your system idles at a heightened state, and so getting more really intense input calms your system down.” Which is why, she explains, A lot of folks who’ve survived trauma end up being really calm in crisis and freaking out in everyday life.[emphasis added]

Or calm in the face of a retelling of a gang rape, a slashing, a fireball of jet fuel, a gorilla attack, lost limbs, integrity, safety and belonging. Or having a steady diet of serial killers, rapists, poisoners, people who shoot, stab, slash, dismember, mutilate, rape and impregnate their own daughters or granddaughters, who hold someone captive to torture for his amusement and sexual arousal. I can’t get enough of that shit. When The Girl sees Female Serial Killers laying around or Most Evil or Deranged on the TV, she calls it “Mom Stuff.” I’ve read most of TruTV’s Crime Library [Note: link] once, if not several times. Henry—saw it in Chicago when it first came out and watched it at least twice more on VHS—gave me no nightmares though I did cringe a few times at the end which had nothing to do with gore.

What McClelland did is not for everyone, and does not mean that “all” rape survivors need is some violent sex to heal their psyches. This should absolutely not be over-simplified and made into some bullshit ___. And we cannot compare what McClelland did with full consent and someone she trusted with her bodily safety in her own place, her own bed, to this poor child or this one or Ebony [WARNING: “I Survived…” video starts automatically Note: Ebony’s excerpt is gone but pick any of these clips on YouTube to get the idea]. But she got in one night what some never get in an entire lifetime—a chance to reset the nervous system, to dunk down and come up feeling somehow cleaner.

So I watch I Survived….

A final deep, slow breath, and it’s done. Click.

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hctiB G: Hi, Yellow Bitch

originally posted February 21, 2006
reposted February 21, 2011


 

In class we touched on the nappy hair issue and I added that I’d heard as a child, How can such a yellow girl have such nappy hair? (Also, when older, I heard, stuck-up Creole bitch, stuck up yellow bitch, and stuck up high yellow bitch.) It was on my mind because of the newspaper article Sunday, far too short, on Haki Madhubuti, a man and writer I admire even though, maybe because, I don’t agree with him on all points. But one part of the interview struck memory and set me thinking:

Q: Was being light-skinned a problem?

A: Being high yellow was always a problem, yes. What happened, early in the struggle in the 1960s, I would always be challenged by men in the struggle that were in some cases darker than I was but not as intellectually referenced. There was always the question, was I black enough, could I be trusted in the deepest of struggle? I decided I was going to have to outwork everybody in the black community, not tangential to it, not parallel to it, not in some academic university setting. I would really have to produce in the black community. That was my mission.

I was pleased to see “high yellow” and that end of the colorism spectrum mentioned in the newspaper but it was equally painful. When suspect, you must work harder than, be more committed than, be more hardcore and “authentic” than anyone else. Which is not authentic, in my opinion. Peers, adults, strangers, family suspected I wasn’t “down” because I was light and almost white-looking (except for the nappy hair and nose–and not for long; I still get in the sun as much as possible), a decision made before I spoke or got close enough to distinguish one eye from the other. The assumption was I thought lighter meant “better.” I grew up during the shift from near-universal Black pride in education and hard work to the school/kid culture of today in which As or Bs, knowing how to spell, liking to read (anything, not just Jane Austen) meant you were “acting/tryin’ to be white” and in my book-smart-straight-As-glasses- fat-unathletic-too-bookish-to-be (or care much about being)-hip case, I was an inherent traitor. But instead of taking the usual path, one I saw almost every other light-skinned person around me take (and had taken and I would see take over and over), the path Madhubuti speaks of, I decided to get comfortable with, if not downright like, being an outsider. I didn’t turn away from blackness or pass or become infatuated with false “superiority” based on internalized white supremacy (I’m not a nationalist nor am I an integrationist) but turned away from the daily pit fight of proving my blackness, proving where I stood every second and inch, proving every minute Who I Really Was.

And it is still a problem. For me and others. I wait for the you’re-not-black-enough shoe to hit the back of my head. Every day I fear all my not-black-enoughs will jeopardize me at the University. Yet I still contrarily resist playing the Prove-It Game, still to my detriment but I stubbornly cling. The same essentialism that says I must like X and behave like Y to “be/prove/signify” I am black is the same that says my skin color determines my intelligence, moral values and reproductive choices and that says my uterus is the center of and only justification for my existence. I eat my beans with a gravy, drink pot liquor from greens, eat black-eyed peas on New Years and red beans on Mardi Gras and tell my daughter proudly about black history and braid her curly, wavy, somewhat kinky, thick, beautiful hair. My skin gets ashy. My hair stays dry. I experience racism. And colorism. I get up early to go to Zulu and ignore Rex. Yet I do not know much about Mardi Gras Indians, Martinique, slave markets, Haiti, Senegal, underground rap, the Ninth Ward or the old Magnolia projects or what “flossin’ “ means. I sort of know what crunk is now after many months. What disturbs me is that the black-enough bar slides up, down and sideways depending on who is holding it over your head and for what reason, to put you in your place or to just plain fucking bash your head in.

I know damn well what we think of as race is a social rather than a biological construct and fact (see the American Association of Physical Anthropologists Statement on Biological Aspects of Race). I also know that I have never in my life felt like a white person or wanted to be one. I did not marry who I did because he was white. And I push my students because I know excellence is not dependent on skin color, that they are capable and will not succumb to stereotype, self or group underestimation or condescension. I do not agree all black people are loud or soft-spoken or any single or monochromatic (pun intended) feature. At the University, the skin colors are all in a certain range but the backgrounds and philosophies range more than at, say, an Ivy League school where nearly everyone, white, black, Latino, Asian, is upper-middle class or better and suburban and has pretty much the same law school/business/med school ambitions.

I did not go out “looking for a white man.” I do not think I am of a different class, order, level or magnitude “than other black people.” I do not hate blackness or my “Black self.” I do not choose my friends based on skin color and the few times I have, always favoring the black person over the white, I have gotten deeply, unforgettably burned. I do not choose all the things I eat, read, listen to, crave, dream about, hope for and buy based on “blackness” or“whiteness” but on quality, price and my personal desire and/or plan. I also do not do this without inner conflict, angst, frustration, existential anger and hurt feelings, mine and those of others. Especially mine.

How will it end, ain’t got a friend
My only sin is in my skin
What did I do to be so black and blue

Black and Blue, performed by Louis Armstrong

 

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