Mixed Up World of Fibromyalgia

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I have a few post fragments in my head but pain has been significant recently and I’m not concentrating well. I mentioned a few posts ago that I have had the diagnosis of fibromyalgia for 11 years but feel like I’m just now truly accepting the big picture of fibro and adjusting my behaviors that may improve my symptoms. Soldiering on and pushing through to complete things I feel like I “should” be doing has not been effective.

So, if you have, think you might have, or know someone with it, let’s learn about fibromyalgia.

I got this information from Healthline by authors Kristeen Cherney, Kimberly Holland, and Stephanie Watson.

A Stunning Dearth of Leadership

In World War I, a German officer gave the following pep talk to Turkish troops standing in a couple feet of snow, “I know you don’t have coats and you don’t have shoes, but our enemy, the Russians, are really scared of you.”

In the midst of a devastating pandemic that is under much better control in other developed countries, who are seeing serious decreases over sustained time, one of the things those nations who have the best results in lowering infection have in common, the populations voluntarily wear masks when they’re out. The use of a mask is the most powerful tool we have to curtail this continued health crisis while treatments and vaccines are developed. Our national leader has turned this common sense, community-minded, simple act of wearing a mask into a political statement about himself.

The President of the United States, Donald Trump, joked that you can call COVID lots of things, like Kungflu. You could tell by his delivery that he thought that was a good one. He went on to share that he had urged officials to slow down testing so the numbers wouldn’t look as bad. His campaign said that was joking too.

What we know, for sure, is the leader of our country was joking about the virus, even if we only consider his use of a racist term to discuss a highly contagious, deadly disease that has already taken the lives of more than 100,000 Americans, and climbing. Let’s even accept the spin political aides are trying to sell, just for the sake of argument, Trump didn’t really ask officials to slow down testing; he was just joking.

Let’s go down that path. We have a president who is incapable of sincere empathy. Over one-hundred-thousand people have died in less than six months. How many families and friends have suffered as a result of each of those human beings being lost to them? This president is joking about this devastating, life-changing public health emergency.

Trump has been trying to convince his base that the virus is no big deal, and we’re moving on. He’s talked negatively about testing from the start. At first, he needed to convince himself and his sycophants that testing was “overrated” because they stumbled out of the gate and fell behind many major countries in development of an accurate test. Trump loves to point out he closed travel from China early on, but that’s all he did! He didn’t spend the next month learning about the impact this was going to have and getting everybody ramped up for the inevitable spread within our borders. He dismissively said there were only 15 cases and soon there would be none.

Recently, he has repeatedly “explained” to us that if there is less testing, there will be less cases. Seriously? Which brings us back to his statement that he urged officials to slow down testing. I don’t think he was joking. He has said as much on camera recently, complaining about testing producing too many cases. That is the OPPOSITE of caring for our citizens. Indeed, it is sacrificing people’s lives in an attempt to, in his opinion, look strong and unafraid – and, as a result, boost his poll numbers. Wearing a mask to encourage your followers to do the same, that would be strong and unafraid.

The pep talk we’re getting is, “I know hospitalizations and deaths are up in many areas and hospitals around the country are becoming overwhelmed, but we took care of the virus. It’s just fake news.” And we haven’t even started on his apathy regarding racial injustices being recognized by millions of people around the whole world.

Sometimes I just have to shake my head at myself

In a recent post, I lamented that pictures seem to disappear from my posts. I spent hours making sure I only had free pics in my published posts. (I might have found and used unauthorized pics I found online.)

I gave it a couple days, and photos were still being replaced by a message about missing attributes. Quoting myself, I was “freaking pissed.” At that point I decided I’d just have to use my own pictures, and recognized this was going to seriously impact production quality and relevance to subject matter.

Today, I googled about what was happening. Pretty quickly, I found my answer! If you delete a picture from your media library, it is no longer going to show in your post. So, I need to be more selective when I’m choosing because every photo will remain in my library, taking up storage space.

So glad I found the solution and the problem was just user error! 😏

Learning Curve

I have a post in my head but I’m too tired.

Great website regarding fibromyalgia- Counting My Spoons. I’ve avoided reading stuff about fibromyalgia for years. Good insights and perspective. Going to address what I can through behavioral changes. Things I want to work on include:


No excuses or apologies

Listen to my body – and my body is telling me I really don’t have the energy to write about how excited I am to focus on my chronic illness in new and positive ways.


Photo by skz published with permission

It has been a really good day, relatively speaking, so I’m taking note. Pain has been low level, I had a little energy, got out of the house, and planted the last of my pots. (Pictured above, starting at the top and clockwise: African daisy, licorice, calibrachoa, and decorative oregano with a dracaena spike in the middle.)

Being outside, getting my hands dirty, is like therapy for me. Working with flowers keeps me present. Pulling some weeds and trimming off dead flowers and foliage gives me a sense of satisfaction. I choose plants that make me smile.

Gardening became an interest by default. Raising two little boys, mischievous and smart, meant spending hours outside, weather permitting. When they went out, so did I. Every once in a while, I’d try to let them go out to play unsupervised, but they invariably confirmed that they did require fairly constant attention. Two other homes on our block also had two young boys each, so the six of them were quite the little whirlwind of activity.

My husband and I learned about landscaping by trial and error over the years, but it wasn’t until I worked in a garden center that I began to learn more and really upped my planting. Herbs grown over the summer are dried and used all year. We’ll have fresh chili peppers, tomatoes, and zucchini. Bright flowers in pots and beds decorate the length of the deck and corners of the yard.

Today reminded me that there are beautiful summer days ahead and assured me that I will be enjoying them. I’m tired now, but in a good way. I hope I’m emerging from a bad flare up of my fibromyalgia, but right now I’m just going to be thankful for this day.

Fogged In

The last hour perfectly illustrates fibromyalgia fog, writ large. Baking some leftover cookie dough and then baking banana bread seemed totally doable, even with a cloudy head.

As the cookies baked, I was getting out everything I needed for the banana bread. Reading and re-reading the recipe, I slowly got the ingredients on the counter. Somewhere during this task, the cookie timer chimed. I turned it off, needing to put something down to deal with cookies, I forgot about the cookies for a few. They’re on the left, toward the back, in the above photo.

In slow motion, I followed the recipe I’ve used for 30 years at least, having to really focus rather than gliding thru the steps. Got the bread in the oven, set the timer for 50 minutes, and put my feet up. Timer chimes, I get a toothpick to test if it’s done, open the oven and there are two puffy but bright yellow and extremely moist loaves. I thought, “wtf?” Then I noticed that at some point with changing the temp, setting timer, whatever – I had turned the oven off! It stayed warm-ish from the earlier cookies. The loaves looked just a tiny brown around the edges.

This was after a few minutes of preheating, again. Left them in for 30 minutes. We’ll see. This is not only a study in fibromyalgia, it’s also kind of how cooking with Sara can go.

Photo by SKZ

Not too bad. We’ll see what we’ve got when we cut into it.

Thought I lost all 100 posts I’ve published. Felt sick. Found them! The fog is thick.

Wrote this without my reading glasses, so apologies if there are typos. Maybe I’ll proof and edit layer….or not.

Irritated and Foggy

So fricking pissed. When writing a post, I like to add a picture that ties in. I’ve been using Pixel Free pics but after a couple/few days, the picture is down and replaced with a message regarding a lack of attributes.

Now, I’m not tech adept in the best of circumstances, but right now, I’m in the midst of fibro fog, something I haven’t written much about because it’s hard to focus in the fog. In the first paragraph, I ended a sentence with a preposition which I would never do usually; I don’t care. Not gonna rewrite it in order to fix that.

I awoke this way today. Coffee doesn’t clear it. Just gotta stumble thru it. Luckily, all I have going on is the installation of a new garage door opener in a bit here.

Anyway, about the pictures, I have literally spent hours going thru old posts and replacing the alt attributes message with a new pic. Not gonna lie, at first I would just google my subject and mess around until I found one I could copy into my media library. I figured if it allowed me to publish it, must be fine. When I initially noticed the message in place of a photo at first, I didn’t know which were from Google and which were from the free photo library. Key word there – free.

Now I know for sure all pictures are from free collection, and I’M STILL GETTING THE SAME THING HAPPENING. Grrrrrr

I am not going back thru them all again. I also don’t know how to delete the block. No way I’m even looking in the vicinity of that issue today. I surrender. So, if you look at older posts and see that message, sorry. I guess I’m going to have to start taking my own shots to use in my blog. Lower your expectations for production quality and relevance.

For fuck’s sake.

Comfort in Numbers

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It was, at once, both relieving and a bit surprising when I learned yesterday that people with a diagnosis of fibromyalgia are 10 times more likely to commit suicide than the general population and almost three times more likely than other chronic pain patients. (Pain News Network)

It’s perverse, but it helps to know I’m not the only one struggling to the point of considering a way out. I did join an online support site for fibro years ago, after I was first diagnosed, but I quit going to it because it was depressing. I’m rethinking that as I come to terms with navigating life while chronically ill.

Today is one of the best days I’ve had in weeks. I rate how I’m feeling, anywhere from three thumbs up to three down. I started the day in neutral or maybe even a tad bit up for the first time in days and days. Part of what keeps me going is that flare ups have been intermittent, but this go-round with extreme fatigue and nausea, in addition to aches and pains, has gone on for quite some time and I’ve been concerned that this was my new baseline. Having even a short respite is encouraging. I was up and active for two hours before the nausea set in and pain began.

Small victories- I’ll take ’em where I can get ’em.

In My Brain

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Not sure this one will get published. May remain in draft limbo. My mind is not being very nice to me today. I was cleaning pine needles and weeds out of my succulent garden; and, out of nowhere, my brain started in, “You are the odd one. After you’ve been with people, they all agree you’re kinda weird. If a group gets together and you can’t make it, when your name comes up, everyone rolls their eyes.”

i called my husband and, through my tears, asked if those things are true. He assured me I am loved and liked by my friends and family.

I’m sure I’m projecting my own insecurities. Sometimes, inside my head is an exhausting place to be. I’ve been crying more easily and, instead of bringing relief, I’m finding it pitiful and needy. I’ve always equated being needy with weakness, an unattractive quality.

I had a really good stretch of mental health wellness, with negligible symptoms of depression, for a decade and am so surprised to find myself wading through the muck again, while simultaneously trying to unwind the barbed wire wrap of anxiety from which I’ve had extended vacations, but from which I’ve never achieved true, long-term disentanglement.

Although I have been in pain for 11 years and received the diagnosis of fibromyalgia about seven years ago, I find myself just now coming to terms with having a chronic illness. Both of those words have shown themselves quite clearly.

As long as I kept working, fibromyalgia was just another in the list of medical history I’ve accumulated over time. Granted, I was only working three days a week but those were some long m_____f______ days. It was a struggle to make it through full shifts. The four days off were spent “recovering” from work, or so I thought.

Along came the virus, which resulted in me being home full time. Turns out I didn’t feel shitty on work days because I was working and I didn’t feel like crap on days off due to being on my feet from 10 to 7 the day prior. Off work for a bit more than two months now, I realize I feel pain, nausea, fatigue, light headedness, muscle cramps, leg weakness, etc. intermittently over every day even though I’m able to pace myself, delay things on my to-do list, and lie down when needed.

It’s not just that I have fibromyalgia. It’s not just that I have a chronic illness. What I’m accepting is that I am chronically ill. That may sound like a distinction without a difference, but it feels to me like I’ve gone from trying to carrying fibromyalgia in one of my bags to just going ahead and wearing it, no longer thinking I might be able to shelve it if I try hard enough.

I’m not giving up on feeling better, and I’ll continue doing what I can to improve my condition; but I am not going to be surprised and disappointed every day when I don’t feel well. At this point, the repeated sense of defeat when symptoms occur may be worse than the illness itself. Somewhere along the way, I got the idea that how well or ill I am is a measure of my value. When I have periods where I’m able to be active, things are good. I get things done, usually overdoing it despite my husband’s admonitions, and I am proud of myself. Conversely, when I’m moving slowly and spending increased time in bed, I am the opposite of proud. It is humbling, which is not a bad thing in and of itself. I must, though, uncouple my self-worth from my physical wellness or weakness.

Gonna let this one marinade overnight before I decide whether or not to post this. Feeling vulnerable.

I’m going to publish this post. I started this blog to document my experiences with depression and anxiety. If this one doesn’t fit, I don’t know what would. Besides, most likely, no one will ever read it! 😂

Dear Mr. President

Can you imagine if, after World War II, the people living in Germany erected statues of Hitler, Himmler, Eichmann, Mengele, Hess, etc.? It would’ve continued to intimidate Jewish communities, gay people, Roma, and whoever else got in the way. It would have been a clear message to all that they may have surrendered in battle but weren’t changing their treatment of minorities. No one would have thought it appropriate or acceptable.

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Starting about 20 years after the United States defeated the Confederacy, white people started to erect statues and memorials in honor of the Confederate army. When threatened with integration, the rebel flag continued to symbolize racism, not history. This was done to remind Black people that, although thay may be “free,” things weren’t really going to change a whole lot.

The South did lose the Civil War, thank God, and the slaves were emancipated, but enough with white southerners romanticizing the system of free labor that allowed them to become wealthy at the cost of the dignity, humanity and lives of Black people. Do not celebrate slavery. Tear down the monuments celebrating (i.e. mourning) the complete defeat of the Confederacy.

Major kudos to our military branches and NASCAR for rising to the moment and disallowing displays of the Confederate flag.

Besides, Mr. President, we know you don’t like losers and the North were the winning, winning, winning side of the biggest, longest, most deadly war on American soil, the likes of which we’d never seen before and I hope we never will have to see again. So, they’re bigly winners! The only flag you, and all Americans, should be fighting for is the good ol’ stars and stripes, the one you embraced and kissed. Patriotic Americans who respect our flag do not have a competing allegiance to any other.

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Can I Get Some Help Here?

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The trickle down effect of strange, which started with our realization that we are in the midst of a pandemic, seems to have reached all levels of life. Nationwide, the social, emotional, and economic strain on the fabric of our country can be felt in a myriad of ways.

Much like the frustration encountered when you’ve put your last dollar bill in the vending machine and your giant oatmeal raisin cookies are stuck mid fall, every which way we turn, things aren’t working as expected. Consequently, people are shaking, tipping, and hitting the machine to get the cookies.

How a pandemic becomes political is beyond me. Setting guidelines and then encouraging people to protest them is not the way our government usually operates. Making fun of people who wear masks or otherwise seek to protect themselves and their loved ones from a deadly, contagious virus does not compute in my brain.

Just when it felt like we were achieving some kind of balance between community health/safety and the need for people to get back to work, we all watched Derek Chauvin murder George Floyd. The cruelty of kneeling on Mr. Floyd’s neck for nearly nine minutes was so out of order, the nation erupted.

Hundreds of thousands of Americans took to the streets to declare loud and clear that we, as a country, will not tolerate the excessive use of force by law enforcement personnel. It is possible to value your local law enforcement officers AND reject racial injustice, but those have somehow become polarized positions, which makes no sense to me. I was hopeful that body cams were going to be a big part of the solution, but didn’t anticipate some cops would just turn them off. That’s out of order.

Here at home, the garage door opener isn’t operating, weather is stormy, and the heating element in our oven is broken. I’m not working or marching because, if I contract coronavirus, I’m at high risk for complications. My husband is not at increased odds of becoming seriously ill, and he is ready to go and do. He’s supportive of me staying home and I will be understanding about his need to get back to “normal,” but it feels really uncomfortable to be at different phases.

Physically, I’m experiencing a fibromyalgia flare including extreme fatigue and intermittent nausea, I’ve been using special shampoo and scalp treatment for thinning hair for several years, but I swear it looks like I have a bald spot! I mismanaged my daily anxiety medication, so I’ve been without for days.

Before veering off our routine path, I was developing plans to start a small business. Now, the economic fallout can’t even really be quantified, nor the long-term consequences reliably predicted for how we do business in the future.

Hurricane season is off to a big start, unfortunately, with three named storms already. For many folks, winds and floods will further disrupt daily life and bank accounts.

Having life out of order pushes all of us to our limits in one way or another. More than ever, we need to respect each other, especially when we don’t agree. Compassion and understanding for our fellow humans have never been more important in our society than they are today. Instead of tearing each other apart, focusing on differences rather than commonalities, and insulting those who don’t agree with our own perspectives; we can rise, unified, to meet these challenges. We’re all in this disordered world together.

The Long Road to Justice

28 years ago, on a Friday afternoon in the spring of 1992, we waited pensively for the verdicts in the trial of the four police officers who beat Rodney King, hitting him with batons and kicking him for what seemed like forever. This was way before cell phones, so it was very unusual to watch the horrible scene out of someone’s home movie over and over on TV. There were several cops, some just watching. Mr. King was down but moving on the ground, trying to get away from the assault. Later, LAPD said Mr. King was resisting arrest. Multiple officers participate in a prolonged attack, blow after blow.

The general response of white people to watching this play out was, “Oh my God! I cannot believe this! Something has to be done!” Many black people interviewed on TV said they weren’t surprised. The sentiment I heard was, “We’ve been seeing and living the mistreatment of our community by law enforcement for decades. We told you this was happening.”

About a year earlier, a teacher with whom I worked and her husband, both African Americans, took my fiancee and I to the diamond district in downtown Los Angeles to a jeweler Larry knew. After choosing and purchasing our wedding rings, we went to South Cental L.A. to stop and visit Larry’s mother in the house where he grew up, just one house down from the intersection of Florence and Normandie. Next we went to local burger joint for lunch. I asked if we were going to stand out there, and Larry’s response was, “Oh, yeah. It’s a walk up. They don’t have indoor seating.”

Janette, my fiancee and I laughed. Janette explained to her husband that I was asking if we would be conspicuous, being a couple of white folks in the neighborhood. Larry said, “Oh, oh, yeah,” and he laughed. “It won’t be a problem because you’re with me. Anybody gives you trouble, I’ll set them straight.” We definitely attracted the attention of a few guys standing across the street. Larry stood facing them full-on with his arms crossed, staring them down. Not a word was exchanged. The burgers were really good, as promised.

When the trial of the policemen was moved from downtown L.A. to Simi Valley, many cried foul. It wasn’t like the population from the San Fernando valley, where the demographics include a higher percentage of white people, hadn’t heard of the Rodney King beating. Leaders of the black community said this was just another demonstration of the system working for white people. I didn’t think a change of venue would make a difference. All you had to do was watch the video, for crying out loud!

On the last Friday in April, officials announced around noon that the verdicts would be announced in the late afternoon. After work, I headed home and turned on the news. When the verdicts were announced, ALL not guilty, the waiting crowd erupted. At home, my jaw dropped and I was speechless. I still can’t understand how the jurors could justify those verdicts.

Not long after, many residents of South Central L.A. came out of their houses. Rage exploded. Soon, the intersection of Florence and Normandie was flooded with people, and I knew Larry’s elderly mom was so close. We watched as Reginald Denny was dragged from the cab of his truck, thrown to the ground, kicked, punched, and then threw a brick to his already bloody head.

Fires and looting ensued. For three days, destruction was on television 24/7. All of Los Angeles had a curfew. It was a tense, angry and scary time. I checked in with Janette. She said Larry had gone down to stay with his mom.

When Monday came round, I had to decide how to broach the subject with my class of second and third graders. I didn’t question whether or not to talk about what was happening. Having earned my Master’s in School Counseling, I felt strongly we needed to acknowledge and process the events at the students’ developmental level before I could expect them to focus on learning.

After arrivals, attendance, lunch count, etc., I told the kids we were going to take some time to talk about what we’d all been seeing on TV over the weekend. Students responded to questions I posed. “Do you know why people are so angry? Why were those police officers on trial? What are some of the things you saw on TV? What questions do you have?” By approaching it this way, they let me know what they’d seen and heard, so I wasn’t introducing any aspect or topic outside their awareness. We probably talked for 10-15 minutes. I assured them they were safe and we’d be able to talk more later if they wanted. The mood was more relaxed.

The students got out their books and began to read the assigned pages. A couple of minutes later, I noticed a second-grade girl crying. I went to her desk and crouched down next to her. “Are you feeling sad?” She nodded and the tears streamed down her little brown cheeks. “Do you want to go in the workroom and talk more?” Another nod.

Between two classrooms, there were small workrooms the teachers shared with a table, a couple chairs, and file cabinets. I took Liana by the hand. I explained to the class that she was feeling sad so we were going to talk some more. Leaving the door slightly ajar, I sat on a small chair and pulled her onto my lap. She cried and cried. When she could talk, I asked her if she was sad about the riots. She nodded and said, “They’re saying black people are bad.” I hugged her and rocked her, my cheek against her braids. We talked about how there were white and Latino people looting too, because there are people of all colors who make good choices and people of every color who make bad choices.

Recent events have me reflecting on that experience in 1992 and where we are today. First, I will never forget Liana choking her words out through tears, “They’re saying black people are bad.” It was heartbreaking.

I’m saddened and disgusted that we are here, again, outraged over a video of a black man murdered by the police, which have become all too common. Rodney King’s attackers didn’t know anyone was watching or recording their excessive use of force. In Minnesota, Chauvin and his accomplices knew they were not only being watched by people, who were yelling at them that Mr. Floyd was dying, but also that the long, slow, tortuous suffocation was being recorded – and they didn’t care! Chauvin appears casual, one hand in his pocket, not in the least concerned about the consequences for Mr. Floyd or himself. I’m sure he didn’t think he’d get fired and charged with second-degree murder. Mr. Floyd had been handcuffed for some time and was not posing a threat, particularly for almost three minutes at the end when he was completely unresponsive.

I am encouraged that protests have brought out thousands and thousands of peaceful marchers and organizers who have worked with authorities to shut down looting. I’m encouraged by police officers kneeling with protestors. I am encouraged by the timely arrests of the four men involved. I am encouraged by the diversity and unity of people making the message heard that police brutality will not be tolerated and will, in fact, be punished.

Although it’s frustrating and sad that we’re haven’t progressed further with racial equality, I do think the heretofore silent majority of people are making it known in overwhelming numbers that we hear our brothers and sisters of all colors. The road is long but hopefully we can achieve justice.

Police the police. Watch and record. Not one more.


Not One More

It has come to this – we must police the police. When we see officers arresting people, we need to stop what we’re doing and watch. That’s all – watch. If things aren’t going well, we record. We can no longer go on about our busy days, assuming law enforcement will administer our laws equitably, though most will. My cousin recently retired after decades of service as a police officer, and I understand it is a very difficult and dangerous position. I appreciate the men and women who put their lives on the line every day and the families who know there is always a chance they might lose their loved one.

At the exact same time, videos of unarmed men of color being murdered by the police keep coming – again and again and again. It sickens me. It appalls me that we are only seeing a fraction of what takes place, just what happens to be recorded.

Body cams were supposed to encourage everyone to stay in line and provide proof of wrongdoing, but here we are once more. Now, we must all witness what takes place in our communities, and that should only feel threatening or intrusive to officers who are not accustomed to following department protocol (no chokeholds, don’t kneel on anyone’s neck – especially when that person is telling you they can’t breathe). If everyone is, at the very least, treated as a human being, there shouldn’t be an issue. That’s why it is frightening, disgusting, bewildering, and heartbreaking to watch this tragedy play out time and again, over all the centuries,YES, CENTURIES, of white people trying to deny people of color their humanity. The irony is that the perpetrators are, through their actions, revealing their own lack of humanity.


Where Is Basic, Decent Humanity?

Kneeling on a man’s neck for eight minutes, the last two-and-a-half unresponsive, no longer begging to breathe or calling for his mama, surrounded by a crowd of people shouting at you, Chauvin, to let the man breathe – that is a savage, inhumane abuse of power, a depraved act, in full view of all with no concern of rebuke, one hand in your pocket, illustrating there was no threat. Eighteen, EIGHTEEN, previous complaints from community members. Your brothers in blue going on with business as usual.

All you needed to understand what you were doing, treat George Floyd as a human being and pay even minimal attention to his condition is basic, human decency. Where has yours gone?

Over and over, we see this devastating tragedy play out, ripping families and communities apart. My mom heart grieves for the parents of black and brown sons. It’s nerve wracking enough to give our kids freedom and let them ride their bike off down the street or drive away alone after the driver’s license is procured. I cannot imagine adding the fear that this child has increased odds of interacting with law enforcement officers, who will start with the assumption that my kid is trouble, and which might end with the death of my baby boy just because of the color of his skin. My heart aches for you.

Please, can we just have basic, human decency for one another?

Wait, What?

Photo by Flickr on Pexels.com

Back in November, in the midst of profound depression, I stayed in bed for a couple weeks and zoned out on binge TV, waiting for the meds to reach my brain. One particular show looked interesting; but when it started, the sound effects seemed extreme and discordant. I remember thinking it made the show unwatchable.

I’ve thought about giving it a second try, but recalled being overwhelmed by the noise in the intro. Just started it this afternoon, and there is absolutely nothing remarkable to hear.

Must admit, I found this fairly disconcerting at first pass, but it confirms what I’ve learned over the years – depression is not just a bad mood, feeling sorry for oneself, or being too weak to handle life. It is a biochemical illness that affects the whole body system in a variety of ways. Mental illness is an illness. No shame in that.

p.s. I guess there is a mix of sounds, ones that go with espionage, but nothing like I remembered. I was pretty careful about what I watched in those early days, strongly encouraged by my husband. He would say, “Watch something that’s good for your soul.”

The Fibro Ride

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As tempted as I am to analogize living with fibromyalgia to the ups and downs of a rollercoaster ride, more ups would be required. It’s more like a ferris wheel. Eleven years after the onset and eight since the first of three diagnoses, I think I may be accepting that I am living with chronic pain and fatigue in addition to depression and anxiety.

Recently, I’m experiencing deep, aching pain in the abdominal connective tissues that attach at the hip pointers at one end and the ribcage above the diaphragm at the other. The pain radiates deeply, and my mid back aches as a result. All of this has a deleterious effect on my appetite, which would be great, except that I fail to eat small, substantial protein regularly, instead snacking on easy carbs. Consequently, my blood sugar gets low and I become even more tired, less energetic.

The fatigue is like a wet blanket, weighing me down and making everything harder. On a good day, I get a few hours of get-up-and-go before I tire out. Napping is a wonderful thing, but I rarely feel refreshed upon waking.

Most recently, I’m experiencing leg weakness daily and low-grade fevers intermittently. Fevers are certainly concerning in the days of COVID, but these are not high temps and I don’t have any respiratory issues. Basically, what it boils down to is that I feel like crap most of the time.

Enter acceptance. In my heart of hearts, I was really hoping that the fibro would be relieved when I stopped working due to the pandemic. It’s not. It’s here and continues to cause a very wide variety of symptoms. It sucks. I am thankful daily that I’m not working, on my feet for eight hours a day despite the issues experienced. I am so grateful I can rest between tasks, take things off my list when necessary, and put my feet up when I’m done. I will focus on the positives in life. Who I am is more than the limits imposed by my chronic illness.

Guess Who’s Coming to Dinner

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Friday was a milestone. We did it. My husband and I went out for dinner at a restaurant! This was the grand finale to my husband’s 50th birthday.

I was a reluctant diner, but the restaurant assured they were operating at 50% capacity. We were directed to call from the parking lot upon our arrival for our 6 o’clock reservation and we’d be allowed in when our table was ready, no waiting in the lobby. Although I was reassured by these measures, as a person at high risk for complications if infected with coronavirus, apprehension was my primary sentiment.

Based on the number of cars out front, I was skeptical that they were only serving 50% of capacity, but the scent of meat cooking over Tamarack outweighed my doubt. When I phoned, they were ready for us immediately. Upon entering, the hostess greeted us, “Welcome! Would you like your server to wear a mask or not?”

As soon as I recovered from the surprise of customers being in charge of PPE use, I said, “Yes.” My husband indicated he didn’t think it was necessary, and therein lies the tension we’re going to be dealing with for at least the next couple of months.

Prior to our outing, while discussing my anxiety regarding the approaching event, I specifically requested my husband’s support for however I needed to deal with being in public. So when he indicated we didn’t really need the waiter to mask up, I shot him the evil eye. After nearly three decades of marriage, he reads the evil eye very quickly and knows what will follow if I am put in a position to defend my stance. The hostess effectively read our nonverbal exchange and said, “Really, it’s no problem,” and led us to our table.

Because it’s a steakhouse, the servers had bandanas around their necks and needed only to pull the cloth up over mouth and nose. There were a couple other groups in our section who had waiters using their face coverings, but the majority did not. There were definitely many empty tables or space where tables had been. There was way more than six feet between us and the nearest diners.

Our steaks and lobster tails were marvelous! We don’t typically order so extravagantly; but we were celebrating my husband’s half-century birthday as well as our first meal in a restaurant for a few months, so we splurged.

On the drive home, I reminded my spouse that he had agreed to support me in whatever way I needed as we navigate our way forward. He acknowledged he should not have said anything when I chose for our server to wear a mask. I let him know that if I have to justify my desire for protective measures, I’ll simply stay home.

In 2009, I had my own individual medical crisis. Both lungs were filling with fluid, and nodules were seen at the bottom of my lungs. I had a fever of 103-104 degrees for days, not responding to IV antibiotics. My organs were shutting down. My husband had taken me to the hospital because my lips were blue, and the physician opined that I most likely wouldn’t have made it through the night if I hadn’t come into the ER. A lung biopsy failed to provide useful information, but did require several days with a chest tube and, eventually, serious scar adhesions. Follow-up visits to the pulmonologist resulted in a diagnosis of COPD (chronic obstructive pulmonary disease), which only bothers me now when we have severely smoke-filled air from forest fires.

I will do whatever it takes, within my control, to avoid becoming infected and ill. As others move forward through the phases of reopening, I will remain under directions to stay home unless necessary. Our dinner date was out of my comfort zone for sure, and only the milestone birthday propelled me into the unknown.

Unfortunately, I think the mask/no mask divide is merely an indicator of the great uncertainty that lies ahead as we slowly emerge from pandemic precautions over the next several months. The differences in protective measures will not only lay bare the variety of state responses, but many a house divided.

The Gift that Keeps on Giving

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About ten years ago, my uncle was trying to clear out the fruits of his late wife’s bargain hunting skills. She was like the Energizer bunny, always on the move and, as she buzzed around, she was asking questions and conversing all the while. I’m sure she saved a lot of money buying decor, small appliances, towels, etc. because they were all such a really good deal. 😄

Some time after my aunt passed from pancreatic cancer, my uncle invited me to come over and look through things that needed a home. When I arrived, we went downstairs and walked into a bedroom. He switched on the light and said, “Take whatever you want from this room.” There was an interesting mix of framed pictures, a 6-foot tall mirror with a dark wood frame, artificial flowers, and a treasure trove of all things involved in dressing up a gift – wrapping paper tubes, square packets of paper, and gift bags of all sizes and shapes, for whatever occasion you could possibly imagine, including oodles of Christmas miscellany. Tissue paper of all colors, ribbon and bows, all of the accessories were supplied in abundance.

in our office room, I stacked three shelves in the corner and very much enjoyed sorting and organizing funny, sweet, and beautiful bits and bobs my aunt had picked out herself. I was pretty proud of myself for putting together a little gift wrap station. More importantly, every time I chose the perfect outerwear for a present, I smiled, thinking of my aunt. I can still hear her talking. Ten years on, I’ve enjoyed making use of the majority of the bounty.

Preparing for my husband’s 50th birthday today, I was rummaging through a closet, searching for the “Over the Hill” decorations I thought I’d held onto from my 50th, five years ago. I couldn’t find any of that, but I couldn’t believe my eyes when I opened one storage box and it was absolutely full of a whole new inventory of my aunt’s gift wrap bonanza!

Didn’t locate the “Haha, you’re old too now” party paraphernalia with which we’re all familiar, so I had to improvise.. Enlarged prom picture from 1986 on the garage door? Yes, please.

Am I the Only One Who…

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is it just me, or do others apologize to their pets if they bump into them or are late to get their dinner served?

Am I the only one of my generation, end of the boomers, who always just assumed, as we were growing up, the government was regularly listening to phone calls?

Are other people surprised by the vicious venom spewed in some of the longest FB conversations I’ve seen in a long time? And people getting shot over wearing a mask? WTF! I’d hoped the dog-eat-dog fervor portrayed by characters in disaster movies was an exaggeration, but we see some of that now during this pandemic.

Was I naive to expect our local, state, national and global communities to unite, working together to optimize amazing technologies and global networks in order to hit this pandemic from all sides? Apparently so.

Is it wrong that my bed is my favorite place in the world? Am I the only one spending more time in bed than usual?

Do others refrain from thinking about the future, concentrating on the challenges facing everyone in the next few months, and avoiding plans for the mostly unknown, certainly less than predictable, future beyond?

Anybody else have older dogs and, while you love them and enjoy the time left, also look forward to a house without dog hair and the freedom to spontaneously go and do? Or is that just a step too far?

When meeting someone who has future friend potential, am I the only one who cringes and rethinks said potential when you realize their view of the world is not close to one you share, but quite the opposite?

Are there other people who dislike cherries? Apparently, I haven’t met the one or two others in the world who share my aversion.

Surely, I’m not the only person married to someone with a view of the world I cannot see? Neither can we share our visions with each other without a pretty quick ramp up to raised voices. We agree not to talk politics.

Am I the only one who thought a pandemic would be above politics?

Anyone else prefer a rainy day to temperatures in the 90’s?

During this stay-home time, it’s good to remind ourselves we’re not alone. I would say, “We’re all in this together,” but it doesn’t really feel that way recently.

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p.s. I almost forgot – Is anyone else self-rationing how many squares of t.p. you use? I keep thinking of Elaine on Seinfeld, “Can you spare a square?”

Dancing Glances

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I’m experiencing glancing pain all over my body with intermittent aches. It’s such a strange feeling, thought I’d try to describe it.

There is a burning type of pain, some muscle aches and spasms, and stingers. They travel, lighting up different areas very quickly.

First a pain on top of my left ankle, an ache in my right thigh, sharp pain in my head, aching left knee and big toe, ache in low back, tight pain left temple, ache right hip, pause.

Muscle spasm left thigh, pain right top of neck, spasm top of right thigh, ache left jaw, ache in left wrist, continued spasms top of both thighs, pain in low left ribcage. Pause

Ache left temple, spasm right foot, pain in sternum, pause.

twitching in both legs, ache back left head, cramp lower left back, cramp left hip, pain side of nose, abdominal cramping and pain at lower ribcage both sides, pain side of right foot and left shin, pain at both hip pointers, sting on left ankle, ache left hip, pain left wrist, right shoulder. Right elbow

Gotta stop typing. The pains move around as fast as I can type them and the pauses are less than a minute. I’m not constantly experiencing these little pain lightning storms. One of the ways my body gets pain wired crossed. Ok, gotta stop. Shoulder hurts.

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