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Fibro Saturday: How much should I share? plus minor updates, a Lady Gaga reference (she has it, too) and links.

Damn right I am.

It’s been almost two months since I’ve been diagnosed with fibro and sharing hasn’t been an issue. I posted here within a few days of the diagnosis and I shared it at work. At the time, I was missing work here and there and figured I should let them know why.

And I post here about it once a week.

After all, I’m a dude with Fibro. Not many of my people can say that, so I figured I should.

So you’d think I’d be past figuring out what to share, but I’m not.

Most of the information around the Interwebs is by people whose lives are significantly reduced by this condition. I’m in a few Facebook groups and very few of the posts are about how great life is in spite of everything. They’re hurting and looking for help. In many cases, their relationships and jobs have been diminished. Some are confined to a life that’s barely an existence.

That last thing I want to do is crap on those peoples’ experience.

That said, maybe it’s time to tell the other side of the story.

Since I got a little more serious about things, I’ve lost nine to ten pounds, depending on the day. (I only have fifty more to go.) My diet is cleaner. I’ve start cooking things so I can enjoy things I’ve avoided because of the crap that’s added when you don’t make it yourself. And I still manage to have a beer every now and again.

Finally, I’ve started walking, and then running again. I haven’t made up all the ground I’ve lost since things started to go sideways, but I’m closer. I’ve covered at least five miles (walking or running and walking) ten days in a row and at least four miles for eighteen days in a row. Since I started keeping track on Valentine’s Day, I’ve covered more than 200 miles. That’s just the start of what’s going to happen.

I’ve posted to this blog every day and submitted a couple short stories I really like to a writing contest. I’m working on first revisions to the most ambitious novel I’ve ever attempted to write.

In short, I’m doing what I can do to move forward anyway. Screw Fibro. It crushes other peoples’ lives and it may eventually do the same from me. Until then, I’m gonna continue kicking its ass. I want to run a 10K this fall8 and a half marathon over the winter. And I still want to run a marathon.

In the meantime, I intend to live my life in a way that minimizes Fibro’s impact to my life.


* * *

Update: I ran 6.5 miles this morning. That’s a 10K, baby. Now I’m scoping out half marathons for the fall, because why not? All of this is obviously day-to-day. I could wake up tomorrow and crash to the worst days of 2015, so I’ll take every day I can get and just kick the living crap out of it.

Food Update: Didn’t make anything new or exciting this week. Just the yogurt and granola, but we’re having turkey chili tonight and hoping that’s good.

Things I could do better:

  • I’ve been backsliding on the food, so I need to behave myself the next few days and re-establish some good habits. That’s vital if I want to continue.
  • I’ve done very little yoga and no meditating. I need to build that into daily life. My mindset’s been slipping a bit lately.

* * *


In which Chris struggles with the concept of privilege.

I’ve been thinking a lot about the concept of privilege lately. Not just the straight white male Christian privilege that marks everything I do. There are lots of kinds of privilege.

As I’ve noted before, I have a condition called Fibromyalgia. It’s a condition in which my brain reads normal nervous system chatter as pain. It also increases fatigue, malaise, cognitive functions, and digestive malfunction. My case is relatively mild, to the point where I ran five miles Saturday and walked another three. My goals right now are to complete a 10K sometime in the fall and a half marathon over the winter.

Most people with fibro can’t do that. A lot of them struggle just to get to the end of the day. And while I’m worried about having brain fog on calls late in the day, they’re struggling with holding down any job. It’s kind of like hell on earth.

As I walked Sunday morning, I thought a lot about those people and what I’m accomplishing.

No one will mistake me for a clean eater, but as I’ve taken my diet forward, my pain has almost vanished and the other symptoms are gradually getting better. I’ve worked hard at that. I’m making some of my own food and when I order out, mostly I’m getting low-calorie salads, rather than the burger I really, really want. and I’ve dropped some weight along the way.

I’ve accomplished these things when I could’ve gotten angry and turned inward. It makes me feel good about myself and how I’m managing all of it.

Until I think about the people who can’t. Not everyone has the Instant Pot to make yogurt every week. Nor can they afford the meat grinder attachment to the Kitchen Aid mixer to grind the lean pork for the homemade sausage or the ground turkey. And maybe they struggle to keep the kids fed and bills paid and don’t have time.

So, yeah, I’m doing those things, but maybe it’s only because I have the opportunity to do them.

They either don’t have the luxury to or can’t devote about an hour a day (as it’s turned out) to exercise.

It reminds me of a book we went through years ago in my men’s small group called The Imitation of Christ, by Thomas a Kempis. I struggled with the content because it seemed to say that anything good in me was there because God put it there. All the bad stuff, that was just me.

And that takes me to the cultural discussion of privilege. I’ve covered this before. I can run before sunrise without worrying about what’ll happen to me. To the best of my knowledge, I’ve never been followed around a store in case I decide to shoplift something. While people have made judgements about be based on race or the fact that I’m a dude, it’s been rare.

All the things I said I was privileged to do–the exercise, the cooking, and the rest–are things you can’t do if you’re trying to balance multiple jobs.

One way of looking at that would say that those accomplishments, along with the job I have, the house I live in, and everything else. are solely a product of my privilege. Sure. I’ve had bumps, but relative to women, people of color, LGBTQ+, atheists, Muslims, and a host of other people, I’ve gotten every benefit of the doubt.

In some eyes, as a white dude, I’m nothing more than an accumulation of my privilege.

In my fault, in my fault, in my most grievous fault…

You could even say that because of that fact, in a just world, much of what I have and what I’ve accomplished should belong to someone else.

To be honest, that pisses me off. It makes me functionally worthless.

But I can’t stop with that. It’s blindness to assume I don’t have any advantages because of my sex, my skin color, my heterosexuality, the fact that my Fibro is mild, and a host of other things. It doesn’t mean that I’m nothing more than a collection of my privilege.

Put another way, a lot of people without Fibro didn’t go out and do the road work this weekend. They didn’t accomplish the things I’ve done. I own those things, but even my hard roads might’ve been a little easier.

The question is what I do about that.

When it comes to answers, I still haven’t found what I’m looking for.

As a Christian, and not a great one, Jesus told us to love God and our neighbor. I’m not certain that’s a great comfort right now.

For whoever is joined to all the living, there is hope, something we all need.

“For whoever is joined with all the living, there is hope. Surely a live dog is better than a dead lion.” — Ecclesiastes 9:4

We haven’t had an attempted insurrection in a month. We have racial issues to deal with, but that violence seems to be going down. And the seven-day average of Covid cases nationwide have fallen by more than a third since it peaked on January 12 (16,612 to 10,696). Things are far from perfect, but they’re a damn sight better than they’ve been in a long time.

And yet, it sure doesn’t feel that way.

On the other hand, we had an attempted insurrection a month ago. Police just pepper sprayed a 9-year-old in Rochester, NY. And we just passed the 450,000 deaths plateau for the Covid. And there’s been a lot of coverage lately about how we should double or even triple-mask, about how to properly celebrate the Covid Super Bowl, and how the mutant variants may surely doom us all (or keep us home for a long time).

It sucks right now. Mightily.

We’re beaten up, bruised, maybe a little gun shy. And we’re facing a secondary pandemic of mental health issues–a deficit we pushed down the road because we can’t handle it right now. That bill is coming due.

Maybe hope is a weakness right now. Maybe we want it gone because we’ve been down the road before. We thought the Covid would end before the summer was out–and the numbers were relatively low through the summer into fall, before things exploded. And exploded again. And the variants came.

We do deserve hope. So the question is, do we want to feel this way?

We aren’t dead. We’re currently, those of us reading this, joined with the living. And we certainly aren’t the lions we thought we were.

There’s a reason the last thing in Pandora’s Box was hope. According to myth, Pandora was ready to close the box at that last thing.

We can’t close the box.

No one knows what comes next. Whether there’s a second second wave. Whether there’ll be another attack. Whether we an do anything meaningful to resolve racial strife. But if there’s no hope, it doesn’t matter.

We can’t control that, but we can control our response.

When something’s valuable, you hang onto it even if it’s hard. It’s hard to hang onto hope these days, but it’s the most valuable thing. Without it, nothing else matters.

Why are there no pictures of the Covid front lines? Trump admin suppression or something else? Maybe both.

The article appeared yesterday on a website called The Intercept. Its headline breathlessly proclaimed the conclusion: How the Trump Administration suppressed photography of the pandemic. The facts in the article are slightly more complex.

On May 5, Roger Severino is the director of the Office for Civil rights in the Department of Health and Human Services, issued guidelines advising that it’s not sufficient for media or film crews to film patients even if they mask the patients’ identity. This presumably includes still photography. The prohibition is waived if each patient provides authorization first.

In other words, if you want to photograph an overwhelmed ICU, you must first get a signed HIPAA waiver from every patient in that ICU and you must also get them from anyone else whose Protected Health Information could be revealed. The implication is that the Trump administration is suppressing coverage of the pandemic at its ground zero–hospitals where the patients are suffering and dying.

Its case would be stronger if there were some internal communication that showed HHS specifically stating an intention to suppress coverage. It does not satisfy the headline’s statement that the Trump administration is suppressing media coverage. That doesn’t mean its not. Donald Trump’s disdain for any media coverage that doesn’t incessantly fawn over him is well-known.

The article points to a reality show called NY Med, starring Dr. Mehmet Oz, that showed a blurred-out patient in the emergency room who later died. The family later recognized his voice. The hospital, New York-Presbyterian Hospital, was later fined $2.2 million. By 2016, HHS had put the guidelines in place that Severino confirmed in his May 5 guidelines. But it dismisses this case because the images were shown on a reality, show, not news coverage.

The Intercept re-enforces that distinction, asserting that journalist tend to be more responsible than Dr. Oz and company. It says that the Trump administration, through Severino’s guidance, is suppressing coverage that would make the administration look bad and change the public attitude toward how we handle Covid-19.

The article then quotes a number of medical personnel who want the pictures and the story out there. Given the stories of people dying of Covid while denying its existence, that makes sense.

The articles also points out the risk involved with potential for liability involving leaks of personal data. Anyone advising hospitals around risk would be hard pressed to allow that level of risk. By relaxing the guidelines, Mr. Severino could presumably reduce that risk, by making hospitals less responsible for sanctions should a breach occur.

There’s no question that pictures of the suffering from inside hospitals would add emotional impact to the stories of what happens. Most of the images so far have been of exhausted medical personnel with mask lines imprinted on their faces from wearing them while they worked.

But the concern over patient privacy isn’t trivial, either. No one knows what the long-term impact of Covid cases may be. It’s possible (not necessarily likely) that in a few years, residual effects of the disease could make a Covid patient less attractive as an employee. If that happens, and if information leaked through that could identify someone who was suffering in an ICU, that would harm that patient and create a liability for any facility that allowed that information out, innocuous as it might be.

As much as Dr. Oz slinking around ERs in New York City looking for real tragedy to make money on seems distasteful, given 2012 guidelines, blurring a patient but not masking his voice might seem reasonable. However, it caused pain for his family and cost the hospital more than $2 million.

And when this gets sorted out, there are any number of personal injury attorneys who’ll broadcast their selfless mission in life to fight for your rights at your most (tears forming now) desperate hour.

While it’s possible (maybe even likely) that the administration is trying to limit coverage, the article doesn’t fully make the required connection. And you can’t just wipe away privacy concerns with the assertion that most media would handle things responsibly–especially considering that the media is not covered by HIPAA, but the care facilities are.

It’s a hard job being center of the universe. I quit (I hope).

I apologized to my wife the other day because my preparation for Christmas this year has been lacking. She said that was okay, as she does far too often, and that there are reasons for my lack of Christmassy spirit.

For most of us, it hasn’t been a great year. Individually, we’ve been through a traumatic set of events, some a lot more than others.

Looking back, though, I’m seeing a place where I can improve–and that’s to realize that it’s not about me. So I’m gonna jump the gun on the new-year new-me crap by a few days and make my first new year’s resolution. My resolution to make things better for me in my new year is for 2021 to not be about me.

Oh, it’s time, baby.

Tough things will happen in the next 365 days. For one thing, the Jets will play around 18 more games–and will likely be bad enough to be horrible, but not quite bad enough to get that game-changing first round draft pick. For another, there are several more months coming up where I’m likely to not leave home very much.

But it’ll be bad for everyone, at least for a while. I have a home to not leave. I have a job to get irritated about. I have several functional computers and high-speed internet. I’m better off than the vast majority of the world, so I need to be grateful for that–beyond just picking something to post about for gratitude each day on Facebook.

More than that, I need to accept that there will be bad things, horrible days. That some nights, I’ll just crash on the couch and vegetate. That’s okay.

But as the year dawns, I want to stop thinking and worrying about things affect me first, before considering other things.

It started when I got pissed off about masks again a couple of days ago. I’ve become, at least in my mind, the mask police. I take note. I keep a running total in my head of the number of frigging idiots not wearing a mask and the number of colossal morons not covering their noses. I’ve cited violators with a haughty glare and, a few times, a cutting remark.

IT GOES. OVER. YOUR. NOSE! What kind of mask police are you?

And they don’t care. They go on their way while I fume.

Phil doesn’t care that I’m annoyed because he’s not wearing a mask.

No more. I can wear my mask and take note of dangerous situations. I can stay in more. What I can’t do is make them do what I want. So I stopped trying. And it felt good.

It’s a model I want to try across the board. If bad things happen to me, then I can react, but the reaction will be geared toward acceptance and moving forward, not on the misjustice being applied to me.

If I can accomplish this challenge, 2021 will be better already, because I won’t have the weight of making it about me.

Say, uhh, Chris, for a guy not making it about himself, there’s a lot of first-person pronouns there.

Yes. Yes, there are. I can decide for me. But part of this process is letting go of what you do. Irony of ironies, the decision to be less about myself is something I have to do. It starts with a decision about myself to not make it all about me. These first-person pronouns will preventing me from some of the first-person pronouns I use in the future.

It’ll be hard. The last <mumble mumble> years have been about me. There are deeply ingrained thought processes to change.

I hope I can do it.

One good thing: woman vows to get even with cheating fiance, finds purpose

Her name is Christina Bautista, and she went from 300 pounds, thinking poorly of herself, to someone who did a mess of work and found purpose in her life. At first she wanted to get even with her cheatin’ bastard fiance. But it turned into so much more than that.

Read more here.

(Side note: This isn’t fat shaming. It doesn’t have to be running or weight loss, but you’re worth the hard things.)

Yes, you should get the vaccine. But you’re right to have concerns about arbitrary government directives

Michael Jackson is both dead and a zombie. He’s behind me in line twice.

Full disclosure: According to the New York Times, the only people behind me to get the Covid vaccine are dead people and zombies. But I intend to get it, even if it makes me feel crappy for a few days.

When a bill is introduced in a state legislature, it means that one member of that legislature thought something would be a good idea. It doesn’t even mean they think the bill would, or even should pass. So when I read that New York Assemblywoman Linda Rosenthal (D-Manhattan) introduced a bill that would allow the state health department to mandate Covid vaccination under certain circumstances, I wasn’t that concerned.

The bill, Assembly Bill A11179 says that if not enough people take the vaccine to create herd immunity, then the Health Department can mandate vaccination to anyone who can safely receive the vaccine. The bill doesn’t currently have a Senate companion and was referred to the Health Committee last Friday.

The bill provides broad leeway to the Health Department to determine the threshold needed for herd immunity and to define who can safely receive the vaccine.

It wouldn’t surprise me, however, if the bill got a Senate counterpart and became law. We can cross the bridge if we get to it.

Meanwhile in the UK, the Medicines and Healthy Products Regulatory Agency (MHRA) issued advice against vaccinating anyone with a history of significant allergic reaction to medicines, foods, or vaccines. It also said that vaccinations should only occur in facilities that have resuscitation equipment. These actions were taken after two people who receive the Pfizer vaccine were treated for anaphylactoid reaction.

Anytime you give anything to hundreds of millions of people, someone’s bound to have a reaction to it. The two people in the UK won’t be the last. And that, in itself, isn’t a reason to not take the vaccine. For the overwhelming majority, the side-effects will be minimal. Two cases in the UK should not be used as an excuse to not get the vaccine.

This might be one of those cases where the needs of the many outweigh the needs of the few. Or the one.

And the bill in the NYS legislature needs to have a Senate companion, then pass and get signed (I’m not betting against that). The bill even makes sense against the rising tide of anti-vaxxers. We can’t beat the Covid if a certain percentage of people refuse to take the vaccine because of the secret Bill Gates nanobots that wrap themselves around the cerebral cortex, rendering the victim extremely susceptible to suggestion.

If you get the vaccine, the nanobot will wrap itself around your brain and force you to stop using Google Docs.

But health departments don’t have a sterling record applying science to the Covid. This week, the LA County Health Department had its ass handed to it by a judge for its decision to eliminate outdoor dining based on the science of using months-old data and the widely accepted scientific method of intuition.

Angela Marsden, owner of the Pineapple Hill Saloon, can’t serve people outside at her restaurant (health department order), but a studio catering tent was legally set up in her parking lot.

In its argument, the county said they can’t prove that outdoor dining contributes to Covid cases. They also said the judge shouldn’t allow the appeal because now anything could get appealed if the rationale appears weak. I believe the judge’s erudite legal response was, “Duh.”

In short, none of this means people should avoid the vaccine. I plan on taking it. It’s a necessary step to stopping the killer of 286,000 people in the US alone. But it’s reasonable to have concern when actions are taken based on broad, unmeasurable thresholds not based on science.

And every time a Governor, legislature, or health department acts without scientific backing or refuses to show their math (or says it’s not possible), the concerns only grow.

One good thing: caregivers

There’s a commercial that plays on local television about the things you learn when someone you love gets sick from smoking. It shows a young man, maybe even a boy, patiently caring for his mother, who’s laid up, presumably with cancer.

The commercial hints at the work and cost involved with giving care. it also paves over the hard parts, the parts where the kid’s mom is bitchy and irritated at the situation and maybe her choices–and takes it out on the kid.

It doesn’t show the end of a hard day where the caregiver is overwhelmed, beaten up, and feels like he or she can’t do a single thing right. It doesn’t show the cumulative exhaustion and hopelessness that builds over time.

It doesn’t show all the costs of giving care to someone. But the hints are there.

I’ve never had to be that person. I’m not sure I could be, but people are amazing. They do what they need to do.

It’s an amazing and very good thing.

God’s bottle of my tears

At church this weekend, the Pastor referenced Psalm 56:9: “This I know, God is on my side.” It’s a powerful verse. It’s so powerful that it obscures the verse in front of it, one of the most powerful in the entire Bible:

You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book. — Psalms 56:8

In the words of the Dread Pirate Roberts, life is pain. Anyone who says differently is selling something. If there were a time when that quote resonates, it’s today. It’s this year.

God is powerful, but he didn’t use that power to divinely kick everyone’s ass (and we shouldn’t harness it for that, either). He keeps track of our sorrows. What hurts us, hurts him.

Pretty sure that’s not what he means

A God who views power the way we do would follow up verse 8 with something like “I saw who did that to you and I’m gonna make them a smudge on the pavement out of them.”

That would be comforting until you figure out that we, too, deserve to be that smudge at some point in our lived.

If you project God’s power and you don’t start with the God who collects our tears in his bottle, you’re projecting it wrong. You have to apply verse 9 in the context of verse 8. God’s power is the power of love, not the power of a phalanx of Christian soldiers.

My job on earth isn’t to determine who gets in and who doesn’t. I’m not God’s divine bouncer. I’m just a guy with a bottle. It’s humbling to know that God tracks my tears in that bottle, especially when other bottles have tears I’ve caused.

Sorry, you’re not on the list.

The default stance of people trying to draw people to God should be open, not closed. It should be warm and unconditionally welcoming, not cold and inflexible.

If you’ve ever loved someone who’s hurting, the first impulse is to go to them and surround them with your love. Embrace them. Caress them. Let them know you’re there.

Heaven, at least to me, isn’t a solemn place. It’s not a cold, stone edifice with an army of nuns whacking your hand with heavenly rulers. It’s a place where the bottle of tears can be shattered once and for all.

It’s a warm place where everyone knows your name and they’re definitely glad you came, where your authentic self belong.

Anyone who says less–that’s the ultimate sacrilege.

Winning ugly is the best kind of winning

My run today was a disaster–and a triumph. Let me explain.

I’m building back from a litany of injuries. It’s late October and the weather’s suitable for July. That’s to say, I’m pushing my pace and increasing the number of minutes I run to try to get back to where I was when the injury bug hit in August.

Today’s goal was 53 minutes. And I pushed my pace.

About two miles in, it became clear I wasn’t going to run 53 minutes at the pace I’d chosen, so I backed off and walked a little. Then I ran again, at a slower pace. After a couple of cycles of that, it became clear, this was not a path to success.

Forcing it wasn’t an option. I’ve already lost four months to injury this year and don’t want to lose any more. I also want to run tomorrow.

I’m reading a book called TOPGUN’s Top Ten by Guy Snodgrass, a former fighter pilot and instructor at the actual TOPGUN Naval Aviation school. One of his themes is that the standard is the standard. It is unflinching and unforgiving. I think he may have lifted this from the Pittsburgh Steelers.

I like that theme, when it’s applied reasonably. Being a jerk to myself and running myself into the ground or injury isn’t a reasonable application.

So if I wasn’t going to run 53 minutes and the standard is the standard, what does that leave?

Rather than call it, I made the 53 minutes. I walked briskly, about a 15-minute pace. I still made more than 4 miles by the time I got home–about half a mile less than I’d have otherwise covered. I got the work done in a way that allows me to do the work again tomorrow.

And I feel good about it.

You aren’t going to kick ass every single day. Some days, you have to adjust and improvise.

Anyone can succeed on a day when everything falls into place. It’s the days when you scratch out a victory that are most special. Being Americans in the 21st century, we have this expectation of domination. Winning ugly isn’t really a win, not completely.

I didn’t expect my body to be uncooperative today. Sure I was pushing the pace, but I did that twice during the week and it worked.

Winning ugly is when unforeseen complications come up and you reach back and find whatever you need to get to the finish line.

And if you’re thinking that really winning ugly would’ve been finding a way to finish the 53 minutes running, my bigger goal isn’t based on today. It’s reaching an ongoing training program and–if I can stay free of injury–finishing a marathon.

That goal’s better served by winning ugly today and worrying about tomorrow’s run when I get there.