30 Things You May Not Know About My Invisible Illness

Invisible Illness Awareness Week 2015: September 28-October 4

1. The illness I live with is:

ankylosing spondylitis [see posts here, here, and here], fibromyalgia [about mein general].

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. Working.

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.

And…fuck, ok, yeah, OSFED [ok and for reals].

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.

Posted in About a Bitch, AS Sucks, Pain! Shit!, The Fibro Line | Tagged , , , , , | 4 Comments

Invisible Illness Awareness Week 2015

Invisible Illness Awareness Week 2015: September 28-October 4

Yeah, it’s illness you can’t see. I’ve got one. Well, a few. There are L.O.T.S. A sparse sampling:

allergies and food intolerances
anorexia, bulimia, binge eating disorder, OSFED (Other Specified Feeding and Eating Disorder) and other eating disorders
rheumatoid arthritis/inflammatory arthritis [including ankylosing spondylitis]
chronic fatigue immune dysfunction (CFIDS)/chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME)
cystic fibrosis
fibromyalgia and chronic myofascial pain
depression and mental illness
digestive disorders (IBS, colitis, celiac disease, etc.)
cluster headaches, migraines, etc.
heart conditions
Lyme disease
Motor Neurone Disease (MND)/ALS
multiple sclerosis
neurological diseases
Sjogren’s syndrome

Invisible Illness Awareness Week


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Bit(ch) 23: SMWH

Louisiana: Women Don’t Need Planned Parenthood. They Have Dentists. Mother Jones, 9/10/15.

The task seems straightforward: Make a list of health care providers that would fill the void if Louisiana succeeded in defunding Planned Parenthood. But the state, which is fighting a court battle to strip the group of hundreds of thousands of dollars in Medicaid funds, is struggling to figure out who would provide poor women with family planning care if not Planned Parenthood.

Nowhere is this struggle more apparent than in a recent declaration by Louisiana’s attorneys that there are 2,000 family planning providers ready to accommodate new patients. A federal judge, reviewing the list in an early September court hearing, found hundreds of entries for specialists such as ophthalmologists; nursing homes caregivers; dentists; ear, nose, and throat doctors; and even cosmetic surgeons.

“It strikes me as extremely odd that you have a dermatologist, an audiologist, a dentist who are billing for family planning services,” said the judge, John deGravelles, who will determine in the next week whether it is legal for the state to end Planned Parenthood’s Medicaid contracts.

No, this is not a joke. This is Gov. Jindal’s LA, a real court case, and a real judge asking, basically, The fuck!?

His harsh questioning sent the state back to the drawing board. On Tuesday, the state’s attorneys acknowledged that the dentists and other specialists didn’t belong on the list. They filed a pared-down version that lists just 29 health care providers.

So there will be hardship if Planned Parenthood clinics across the state are no longer able to provide the health care services they do to the women they do. [I will not add “and families” to somehow soften the idea that this is actually about women and that this thing about women is important because it’s important to women without a backup team or manufactured justification for “you” give a flying fuck.] 29 “health care providers” will provide the “2,100 well-woman exams, 1,200 pap smears,…11,000 STI tests, and…long-lasting contraceptives…to 5,200 patients” that Planned Parenthood did last year in LA? Even if Rep. Cassidy’s unsupported claim there are “more than 100 community health care centers ‘scattered all over the state’ that could accept Planned Parenthood’s patients,” that’s a lot of care to suddenly provide for Medicaid patients, for low-income women, for poor women, many but not all of whom are of color, and most of whom have few other, if any, choices for the kind of respectful care Planned Parenthood provides in this state.

The unspoken part? The opposition to contraception. All forms. And the easiest targets for this ideology are those who have the least representation in a money-takes-and-gets-all not-a-fucking-democracy—the not-rich, the have-least, the non-white, the non-__. Those with money can do what they want and say they are pure, righteous, downright holy if you really ask them. The opposition to contraception is driven by a bushel of myths used as propaganda, including the belief that contraception leads to “risky” sexual behavior, when “risky” is everything that doesn’t result in a high chance of fertilization in a particular context according to a certain religion. [Look up ProLife Action League’s position on birth control yourself. I will not link to such tripe.]

A clear sign that this is about belief and not fact or health care or clinics is the nonsensical resistance in the state’s argument:

So either we’re talking about Medicaid fraud or the attorneys for the state and/or the employees in the state health department don’t understand what “family planning” is. A dermatologist? The fuck!? But this is the right-wing perspective that thinks women’s digestive systems are connected to the uterus, women don’t care about the wage gap, and there’s really no reason to fund “women’s health issues” because. Because? Because they’re women. See?

The fuck!?

Like I said: SMWH.

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The “Katrina” stories, books, articles, started in July. I’ve ignored most.

One, many aren’t about “Katrina” or about the flooding or what survival here was or still is like or has been like. These “stories” are about using NOLA, a natural and unnatural disaster, and flawed policy to assert a point of view, an alleged lesson or benefit or solution found at the expense of human beings, their lives, children, stability and roots. There’s the “success!” story told about charter schools which is mostly bullshit because the story always was bullshit and not about schools or children or education at all—what happened was about busting up unions, weakening public institutions and preventing talk about desegregation, economic justice, distribution of resources, teacher training and pay and why the students with the most needs get the least experienced teachers and shittiest resources. [Side benefit of dismantling public institutions—crumbling the black educated middle class.] And the story on how NOLA has been improved by the destruction of its housing projects. Guess what? We still have crime. And no, the water did not flush away the problem of black people. We are not problems. We are humans. People. Backbones of what make NOLA what it is. There is no NOLA without us.

Two, there is no Katrina Story. And there’s little acknowledgment that to see what happened and is happening requires a collage, that there are multiple recoveries [and not-quite recoveries], not one Success Story. People like their shit simple but there are multiple NOLAs and multiple ways the flooding and the policy disasters after affected those NOLAs. Narrowing the story to the Ninth Ward, charter schools or the opinions of well-off and privileged white folks hides what needs to be said and revealed.

The truth.

It sucked. It was scary. I do not think that generation of kids will ever recover, and I’m not just talking about the extremes. We were abandoned, used for political reasons, abused for political reasons, blamed, victimized, blamed again then praised for our resilience and will to survive. As if we had some kind of fucking choice. As if our suffering finally makes us Noble.

And all that will end in September. The fury of activity this year is about the magic number 10. A decade. After a decade, some in the US want to think about that terrible thing that happened to us.

For a while.

Then they’ll be done.


And we still live here. And live with the aftermath of the shit we had to go through to do what other people take for granted and assume is natural—go home. Stay home.


I don’t want to play the 10-year game. This was and is my fucking life, not an interlude. Much of this historical moment will be lost—voices, emails, missives, blogs and posts and links; fear, love, desperation, making do, making our way through whatever came, no matter how many times; the children and students lost and left behind so adults could get better jobs, press, cars; the absolute meanness of trying to throw away people, neighborhoods, histories, pasts and futures.


Just no.

Go ahead and call me a bitch. Better have. And what changed? Not me.

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Please Forward Book Launch TONIGHT

Yeah, I’ll be there. I’ll even read something.


Press Street HQ | 3718 St. Claude Ave. New Orleans, LA 70117

August 18 @ 7:00 PM CDT

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“Crime By The Numbers”

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” a direct and lasting legacy of American slavery”

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The Charleston Imperative Statement—Read. Sign.

As we grieve for the nine African Americans who were murdered in their house of worship on June 17 2015, those of us who answer the call of feminism and antiracism must confront anew how the evils of racism and patriarchy continue to endanger all Black bodies, regardless of gender.

As antiracists, we know that the struggle against racial terror is older than the Republic itself. In particular we remember the work of Ida B Wells who risked everything to debunk the lies of lynchers over 100 years ago. Today, we see that fierce determination in Bree Newsome who scaled the 30-foot flagpole at the South Carolina state Capitol and brought down the Confederate flag. As feminists, we recognize how racism has been — and is still — gendered. Patriarchy continues to be foundational to racial terrorism in the US, both in specious claims that justify the torture of Black men in defense of white womanhood, and in its brutal treatment of Black women and girls. We also recognize that while patriarchy and racism are clearly intertwined, all too often, our struggles against them are not….

Read the full statement and sign here.

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“In the age of information, ignorance is a choice.”

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“You now lie under the foot of a woman.”

St. Margaret [of Antioch] was the patron saint of peasants and women in childbirth, the latter not because she had children but because [sic] she was swallowed by the devil in the form of a dragon, and her purity and resistance were so great that he had to spew her up again whole and unhurt….The governor, Olybrius, saw her, wanted her, and had her brought to him. She refused him and declared her faith. She was imprisoned, flogged, and terribly tortured. In prison she was swallowed by the dragon; and when she triumphed over the dragon, the devil confronted her again, this time in the form of a sympathetic man who told her that she had suffered too much:

But she seized his hair, hurled him to the ground, and placing her foot on his head, exclaimed:

“Tremble, great enemy. You now lie under the foot of a woman.”

Dworkin, Andrea. Intercourse. NY: Free Press, 1987. Print. 93.

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