This is Not a Drill: CDC’s 7 “Forbidden Words”

 

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The Washington Post relayed the information from a CDC & Trump Administration meeting Thursday night, December 14, 2017 that when the CDC presents their upcoming budget paperwork, they are forbidden to use the above 7 words.

I thought this was fake, ran to Snopes… nope. It is real. Checked Twitter. Real. Checked valid news agencies. Real.

I’m shaking I’m so angry… and even scared… of what this administration is doing to our democracy. By forbidding words, it is no longer a democracy.

Democracy has been dying since Trump took office.

Treating science as a matter of opinion rather than an objective, evidence-based reality appears to have become a hallmark of the Trump administration, particularly when it comes to climate change. So, too, is scrubbing certain words and information from discussions, documents and websites that don’t fit with Donald Trump’s vision. The Department of Health and Human Services has dropped information on its website about LGBTQ individuals.”

Orwellian Dystopia

This edict is one of the most terrifying things that have happened and are surely not the last we will see.

We cannot sit quietly and let this happen. I know many many people have been out protesting, but we have to find another way to be heard.

I am apoplectic… and hope you are, too.

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Holding the Space

“Be kind to the children, for they are close to the other side.” – unknown

When my father was given 3 months to live when he had the intestinal cancer, everyone had an idea of what he should do. Take this herb! Try chiropractic! I was in the “Call Hospice” camp. But my father had a different plan. Instead, he wanted to do chemotherapy. Those of us in the medical arena of his life, holding the labs in our hands, shook our heads at the futility of that… and it might/probably will make him feel much worse. We did what he wanted anyway.

My dad did 2 sessions of chemo and then said, “Call Hospice.”

His death 2.5 months later was peaceful and gentle. And he was so so loved.

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My dad, Saturno Herrera, about 1 month before he died.

When We Need to Listen

In my life right now are a couple of people who have family or friends with terminal diagnoses. Those around them are rushing to help with all sorts of remedies, diets and even insisting on the “power of positive thinking.”

Instead, perhaps this is a time to ask the dying person what they want, not foist on them what we want.

Being near those that are dying is an amazing honor and privilege. For one thing, it isn’t a sudden, unexpected moment where there are always regrets about things not said or done. When you are at the side of a dying person, you have the opportunity for completion and the giving of your heart in a way you might never have before.

It is not a time for airing grievances that will never be resolved. Not a time for your confessions of guilt (find a Priest for that). It isn’t even a time to just sit keening and crying your eyes out, the dying person trying to comfort you in their time of need.

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Nanea Reeves with her husband Vic as he gets closer to dying.

Mindfulness

Holding the Space is a concept I learned in midwifery, but had been doing a long time already with men dying of AIDS decades ago. Holding the Space is sitting quietly, perhaps praying silently, seeing golden light of love surrounding them or just Be-ing with the person heading to the other side (into parenthood/through death/in illness/etc.). Allowing the person to say what they want… rambling speech or exquisite poetry. I like to keep notes, but not at the expense of my complete attention.

One caveat: Take as many pictures as you can… with each person separately, everyone together… take pictures holding the person’s hand… get video of them if they are still talking. I have nothing with my dad’s voice on it and regret that terribly.

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Mindfulness is a buzzword right now, but if there was ever a time to be Mindful, it is when with someone in transition. Not worrying about getting to the store, checking your phone or even talking to others in the room about mundane life crap. BE with the person. Give your full attention to them. Watch them. Witness their transition completely.

If you get tired, you rest. No one can be expected to be Mindful or present 100% of the time. Do go for walks outside. Walk the dog. Eat a good meal. Be mindful of your needs, too.

There But for the Grace of God Go I

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When I am with someone in this holy place (which does include childbirth, of course), I want to share with them how I hope to be treated during my own transition through death. Not that it is my prescribed way of dying, but simply respectful and kind attention.

My family knows how I want to go. At home. People happy, laughing, music blaring, telling fun stories, remembering all the wondrous things I have done in this life. I also want to be read to. Read to me when I am tired and need to close my eyes for a moment.

But that is me. Not everyone wants the levity part that I have requested.

Perhaps the person you are with wants to smoke again, drink until they are drunk every day, wants to go out to a forest and dig their toes in the dirt one more time. Take them! Even if you have to hire an ambulance service and need to push dirt through their toes while they are on a gurney. Be creative to give the dying their wishes. If they want to watch a favorite movie on a 24-hour loop and it makes you crazy…

…so what?!? Let them!

Talk to your loved one. Ask them what they want and need from you.

Then do it.

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An added note: I understand that children dying slowly can be another aspect entirely. I have not lost a child to cancer or another illness or malformation, so cannot speak to it accurately. But, as with everything anyone in the world writes or says:

Take what you want & leave the rest.

Nuts & Bolts of Calling a Doctor’s Office

This subject seems to come up a lot, so I thought I would do a Tutorial on how to get in touch with a person and not a machine when you’re calling a doctor’s office.

My first and probably most important piece of information is:

CALL EARLY IN THE MORNING!

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I cannot stress this enough. Even if you have to wait on hold for awhile. I tend to call about 9:45am. By then the logjam has passed and the way is pretty clear.

Calling in the morning gives the doctor the entire day to get your chart, prescribe meds or answer your questions. Lunch time is the usual time they read your message, so if you call in the afternoon, unless you are in the ER, you will be waiting until the next day for an answer.

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If you are really in a crisis (psych, serious fever or infection), I would call back right after lunch. Be your nicest self! NO yelling about “Why hasn’t she called me back yet?!?” crap. Just kindly say, “I need help. I am so ill. Can I come in tomorrow morning? Or might I talk to the nurse or doctor this afternoon?”

“I need help” is a wonderful way of garnering sympathy for your situation.

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A Practice with a Receptionist

If your doctor is in a practice with a receptionist, it’s easier to get a hold of the doc you’re needing because someone should always be available during the 9-5 workday.

You often will be triaged by a nurse before getting a message to the doctor. Still, the earlier you call, the earlier your voice will be heard.

Most offices close for lunch… either between 12pm and 1pm or between 1pm and 2pm. Calling then, you will get a machine. Leaving a message on a machine is like talking into an abyss. Call back when lunch is over.

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Calling Mental Health Professionals

Therapists especially are meticulous with the timing of their appointments. They are 50 minutes long, beginning at the top of the hour, ending at 50 minutes after. I have great luck calling in that 10 minute window between clients. Some will listen to messages and call back during that time, but many pick up the phone, too.

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Know what you are going to say. They have moments to figure out what you need before the next appointment starts. Write it down if you need to before you call. Be ready!

Psychiatrists’ schedules are a bit more wonky, so leaving a message might be necessary. Just as if you were talking to a person, have what you want to say ready. The more info you can leave in the shortest amount of time… being concise… helps everyone get their needs met.

Playing Dumb

When I really need to get through to someone (and you pick your battles here), I feign accidentally hitting the button that says “If you are a care provider and need to speak to someone now, press 1.” Use that sparingly, especially in the same practice. Really, judicious use, please.

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Bypassing Automated  Menus

If you’ve read this far, I get to teach you a trick I learned from another operator. Not specifically for doctor’s offices, but really helpful for banks, phone companies, cable companies, DMVs… any of the bazillion places that have phone trees you seem to be forever lost in.

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Press 0 (zero) fast, over and over and over again. PressPressPressPressPress a dozen or more times. 8 out of 10 times, this gets me to a person.

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Patient Portals

If you doctors’ office has a Patient Portal, sign up for it asap!

In the portal, you can email your provider, ask for refills, make appointments without calling and see your chart and most lab results.

Patient Portals are the best.

Patient-Portal

If I didn’t answer something, ask me about it!

Bipolar Diary: Incremental Shift

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Loving Nudge

After my Bipolar Diary: Depression Deepens post, I had several people tell me to call my psychiatrist immediately. I thought I could white knuckle it for another week, but others saw what I couldn’t. I trust those closest to me and picked up the phone, getting pushed into a non-existent spot in his schedule the next day. Wednesday, August 2, 2017.

Office Visit

The crying had been keeping me from functioning and did not abate while in his office.

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I told him about the suicidal ideation increasing… then added the obligatory, “But I have no plans to hurt myself, am not stockpiling meds and promise to call 911 if I do find myself getting too close.” He replied, “I understand how frightening they (the thoughts) can be, even when you aren’t consciously creating them.” I breathed a sigh of relief that he seemed to understand.

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artist: Soren Dreier

I’ve had at least 8 different psychiatrists in 30 years and this one is one of the top 2. He listens to me, takes my preferences seriously like refusing the Risperdal increase and is infinitely patient with my continued distress.

I really am so blessed to have such a kind (and gifted) doctor. I know that is rare and how privileged I am to be able to receive quality medical and psychiatric care.

I OWE MY AWESOME CARE TO THE ACA/OBAMACARE INSURANCE I HAVE.

I would not be alive without it.

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Medication Change… Again

I continued crying while he pondered, looking at his computer, typing some, then thinking again.

He found a medication I had not tried before… Latuda… which I’ve since read is used specifically for bipolar depression. Yes, yes… it does come with a laundry list of side effects, but I’m ignoring them, listening to my body instead.

I know it takes at least 2 weeks (in my body) to 6 weeks to feel the full effect of psych meds, but when I got home from the appointment, I took my first pill. Then the next morning, I took the second. (It is taken once a day.)

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Whether placebo or really working that fast, I did not cry until late evening the next day. I didn’t cry the next night, either. And the ideation has slowed, the thoughts feeling more “transparent,” fewer hard imaginings. The images had been like mosquito bites, begging to be scratched. (Not sure I explained that clearly… I’m having a terrible time writing this, pardon spelling and grammar errors, please.)

August 6, 2017

I’m feeling better still. The doc told me that if I was feeling too sedated, to drop the Risperdal, which I did on day 3 after starting the Latuda. I’ve been on Risperdal since 1995, so it is a major thought process to not take it before bed. I do feel less sedated (I described it like someone spiked my drink), but there’s a lot more room for not dropping into a slumber at any given moment.

Let me get this out so those who are following along know how I am doing. Thanks for you care and attention, my dear friends. Thank you for your love.

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artist: Zenos Frudakis

My Wall-E-esque Life: Part 1

“Fat Acceptance” has been a catch-phrase for at least 40 of the years I have been alive. In 2 parts, I share my experiences and lessons learnt being a part of the…

Fat Acceptance Movement.

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I’ve been fat ever since I got my tonsils out when I was 7-years old.

Fat kid, teen, adult and now a “mature” adult.

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Trials (and Errors)

I’ve done dozens of diets, been prescribed Black Beauties & other speed (starting at age 8), belonged to many gyms, taken Phen-Fen (with success, but with heart valve damage), tried Topamax (fail), used Wellbutrin (fail), had a Roux en Y Gastric Bypass (with fabulous success, then epic failure), done hypnosis & acupuncture (fail & fail), become a daily Mindfulness Meditation fanatic (fail for weight loss/huge win for pain relief), have tried to have anorexia, then bulimia, hand-written hundreds of thousands of journal pages, letting them “hold” my pain, shame, revulsion, self-hate, wishes, fears, hopes &, eventually, resolution with my size.

I remain in resolution.

I will never diet or take diet drugs again. Ever.

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Time & Money

Thinking about the masses of time and money I’ve spent trying to lose weight makes my head spin.

Time

  • Going to the gym
  • Writing out menus
  • Researching rules and techniques for success
  • Real life or online support group meetings, including social networks talking about losing/gaining weight
  • Shopping slower to read labels and make sure food is “appropriate”
  • Learning new cooking methods
  • Fighting with family about the change in foods in the fridge and cupboards
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artist: Sapphire4723

Money

  • Gym membership
  • New cookbooks
  • Membership fees & apps
  • Tools for success (exercise equipment, pedometer, walking/running shoes, gym clothes, etc.)
  • Tossing all the “bad” food in the garbage
  • Buying all the “good” food
  • Probably eventually buying more “bad” food for my family because they whined so much about foisting my diet on them
  • $28,000 cash for RNY gastric bypass (GB)

Can I include the time and money (including the taxpayer’s) for the years of therapy discussing and crying about all of this?

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Positive?

I was a Fat Activist in the mid-late 80’s, mostly in the lesbian community. I’ve written about being fat-positive for almost 3 decades.

In the beginning, when I was in my 20’s and early 30’s, I was healthy… labs were fine, no diabetes, my joints or feet didn’t hurt. I crowed (bragged, was arrogant) about how it was the fat-hating that made fat people sick and die, not the fat itself.

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Reality

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Now, at 56-years old, I see how delusional I was. I am well on the road to dying before most people in my family did, and they all had diabetes, too. My future resides in my memories of my Cuban relatives & the diabetes complications they endured before dying. Heart attacks, going blind, having toes, then feet cut off, eventually dying in a coma because the body just gave up.

I see it coming as if it was a roaring train heading right for me.

Litany of Pain

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Here are my fat-related illnesses and issues:

  • Type 2 Diabetes (diagnosed at 34 years old), now on 2 insulins and metformin
  • I heal terribly because of the diabetes, often needing antibiotics for residual infections
  • Stage 3 Kidney Disease from the diabetes
  • Pain with every step I take
  • Osteoporosis and arthritis in my feet, which have broken 3 times just from walking for exercise, and one foot breaking while swimming
  • Broke one foot falling off the Wii Fit Board trying to exercise… needed 3 surgeries to repair
  • Arthritis in my lower back, was on opioids for 8+ years for the back pain, becoming incredibly addicted, finally getting clean 3 years ago (yay me!) Now I use Mindfulness Meditation for pain relief, though many times I wish for some Norco.
  • It took me years to find surgeons I felt safe with to get my 4 hernias repaired (one surgery) and then my gallbladder out (a separate surgery, with 3 hospital visits afterwards because of infection)… several turning me away because of my enormous belly size (blessedly, I found the docs and those issues are resolved)
  • Bone loss from possibly 2 main sources: lack of exercise & the GB
  • Walking with a walker, but should be in an electric wheelchair, my feet hurting so badly
  • Using an electric wheelchair when I shop

Nautilus

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My world has gradually become smaller and smaller. After 32 years in birth work (where I hurt daily as well), I am now a sedentary Phone Sex Operator. I live in a small space and leave the house only for doctor appointments, physical therapy, shopping and seeing my doggies at mom’s house.

Writing that makes me sad.

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Part 2 On Its Way

In Part 2 of My Wall-E-esque Life, I will talk about the place the Fat Advocacy Movement does have in our lives. While it might not be health (despite the incessant refrain that it does), it is most assuredly have an enormous place in our physical and emotional world.

More soon!

Immigrant Birthing in El Paso

I wrote about my introduction to working with immigrants in ICE Burns: My Early Doula Clients. In 1990-1991, I volunteered as a doula at a Planned Parenthood Prenatal Program in San Diego, California.

El Paso, Texas

When I moved back to Orlando in 1993, I stopped for 3 months at Casa de Nacimiento, a birth center (now closed) in El Paso, Texas. 99.9% of the clients coming through Casa were immigrant women from Mexico, usually Ciudad Juárez. My Spanish, school-acquired, then practiced with the doula clients in San Diego, became second-nature in El Paso.

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While Casa gave me an amazing education and taught me many skills, there are lingering worries about being a White person using the immigrant women as practice specimens… a reverse voluntourism experience. I will write about these feelings separately; they are deep and complicated.

I was not as woke about the White Savior Complex as I am now, so merely tried to be the best student midwife I could be. I loved these women and their families. I loved talking to them, learning about their Mexican lives (which were slightly different than the Mexicans’ experiences in San Diego). I purposefully kept my heart open, wanting to be a positive birth worker for the women coming and going through the center’s doors. Those 3 months in El Paso remain some of my most wondrous life memories. While most people despise the city, I found it alive with culture and magic.

Rio Grande

Getting from Ciudad Juárez to El Paso for prenatal appointments was often a hit or miss experience for the birth center’s clients depending on which officer was patrolling the border bridge that day.

It had not been easy: The visa that allowed her to cross back and forth between Mexico and the U.S. is expensive, and she had had to prove she had money in the bank and a reason to return to Mexico to be granted it. The lines at the border between Juarez and El Paso can take hours, and border agents are said to sometimes tear up the visas of women who are noticeably pregnant. Some women end up giving birth on the bridge between Juarez and El Paso because of delays….”

When the border was closed to even those with visas, the pregnant and laboring women, with their families, trudged through the Rio Grande River… day and night… to cross into the United States. They often walked miles to reach the birth center.

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Crossing the Rio Grande was bad enough, but the water was/is disgustingly polluted. American maquiladoras rose on Mexican soil years ago as a way to bypass manufacturing regulations implemented in the United States. With so little oversight, the maquiladoras also freely dump their waste, including poisonous chemicals, directly into the river… the same one laboring women were walking through. On several occasions, we would give a river-soaked woman a shower before she felt clean enough to have her midwifery appointment or birth her baby.

I remember one visit down to the edge of the river to help a nursing mom up the slope, the surface of the water had an oil (or gasoline) slick on it as well as scum like this:

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All because Border Patrol would feel holier-than-thou and not let people over the bridge even with valid visas.

Disgusting.

Borders

I’ve not been to El Paso or Ciudad Juárez since 2002, but the border topic, with #45 in power, has a new focus.

Just this week, on February 22, 2017, the Washington Post wrote “Anxiety over Trump stems flood of Mexican shoppers to El Paso,” ending the piece with:

A U.S. border agent checking documents remarked at the lack of cars.

“People are scared,” he said, as he took this reporter’s and a photographer’s passports.

Of what?

“Of our president,” he said, before sending us on our way.

Yes, those of us who have a positive history with immigrants in border towns are, most assuredly, very, very scared.

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Photo by Ivan Pierre Aguirre for The Washington Post

 

 

Diabetic Discourse: Needles

I’ve been on insulin for a year now.

At first, I was on the kind you keep in the refrigerator and draw up in a syringe with a needle. Good lord, those are pain in the ass.

Not having one clue of all the options, my Insurance Liaison asked if I would rather have pens. I asked what the difference was and she said, “They don’t need to be refrigerated.”

SOLD!

Insulin Pens

I got the pens and loved them right away.

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I keep them in my top drawer with all my pens.

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See the insulin pens? Wayyyy at the bottom.

I am on both Lantus (long-acting insulin) and NovoLog (more immediate insulin), so poke myself 4 times a day.

Now, as a midwife, I know to draw up solutions with one needle, then change needles and use that new one for the injection. Pushing the needle through the rubber at the top of the vial flattens the tip slightly and when you put that in the leg or arm, it hurts more.

But when I use the lancet on my finger to test my blood glucose before giving myself insulin…

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… I (lazily) use and re-use them. They are annoying to change  (4-6 times a day), so it’s just easier to leave it in the mechanism each time. I know, I know… beyond the lazy factor, not too sanitary, either. Especially when I am supposed to be worrying about infections. (I hear you! CHANGE THE LANCETS!)

So when I got the needles for the pens, I thought, “I can be lazy with these needles, too.”

And I was.

Changing Needles

The one thing  with the pens that was different from the refrigerated insulin was the injections freakin’ hurt! It wasn’t unusual to bleed a little after the injection and I also got plenty of bruises.

I don’t recall the reasoning behind it, but a couple of weeks ago, I changed the needle after each injection. Was I experimenting? I have no idea. But let me tell you, when I began changing the needle each time…

… the pain upon injection vanished! The bleeding and bruises? Gone.

What a dork I was re-using the needles.

Clearly, with each stab into my flesh, it flattened those really thin needles enough to damage the skin and tissue.

My Take-Away

Don’t be lazy. Change the dang needle!