It has a name…and I am not you

I’ve mentioned in a couple of my posts over the last few weeks that I’m not blogging as much as before for a number of reasons.  Today, I’ll share one of them.

On Friday, I went to see a rheumatologist.  It turns out that all the pain and fatigue I’ve had over (mostly) the last year is fibromyalgia.  Surprisingly, just having it named has given me a sense of peace.  When you don’t know exactly what something is, you can’t really manage it.  This means I can have a plan for how to restructure my life.

The really fun (okay, more annoying than fun) thing is how people’s responses when they find out are pretty predictable.  My family and close friends, of course, reacted as I had expected–with empathy and offers for help and with simply listening to me without saying much at all.  Of course, that’s generally been a two-way street, so I wasn’t at all surprised.  Much love to you all.  M’wah!

Strangers and acquaintances have also had pretty predictable reactions: Everything from “Have you tried…” to weirdly personal questions to asking me for advice for family or friends.  Seriously–I just found out three days ago.  I don’t have any answers for you!  (Note: This is not everyone.  If you’re all worried I’m talking about you, the answer is, “I dunno.  Maybe?  Have you said one of those things to me?  If not, then no, I’m not talking about you.)

I’ve always been a bit resistant to people telling me what to do.  I’m sure that comes as a total shock to anyone who knows me (or has read my blog).  Well-intentioned people often (mistakenly) believe that everyone wants the benefit of their wisdom, especially if they consider themselves to have knowledge or experience on a subject.  The thing is, we can talk together about what has worked for us, but none of us should believe that translates to having it work for anyone else.

The biggest reason for that: I am not you.  You are not me.  Even our differing philosophies factor into what works and doesn’t.  You may think I should try a particular strategy, but what if that’s not what my doctor recommends?  Or what if your solution isn’t practical for my life?  We should never try to be Pez dispensers of fibro wisdom for anyone else.

The truth about dealing with something chronic is that it doesn’t go away.  Sometimes, I have a series of pretty good days–I’m productive, I feel pretty good, and no one would ever guess.  Other times, I have a string of lousy days where my only goal is not to spend all day crying because it hurts so much.  Most of the time, I’m somewhere in the middle.  And for me, that’s okay.  I’m surprisingly content to enjoy my good days, manage my less good days, and give myself permission to do absolutely nothing on my worst days.  I’m fortunate to have people around me who give me that flexibility.

Because of the fatigue and mental fogginess that accompany fibro, I simply don’t have the physical or mental energy to write the way I did before.  One of the things that triggers my symptoms is stress.  Unfortunately, because I’m highly tuned into the emotions of others, I pick up their distress and add it to my own.  That means that things that I once had fiery energy to write about literally make me sick.  I can’t do constant anger, and that’s a struggle because every day, I see injustices that make my blood boil.  I’m working on what that means to my writing.  Some things are absolutely worth fighting for, and I need to make sure I’m not pouring unnecessary energy into things that are best left to someone else.  Sadly, that means I might also not be able to read some of what others write due to their style of expression.

In the meantime, one of the things that has lifted me greatly while I’ve been working this out is writing fiction.  If you’d like to, you can check out my other blog, where I post flash fiction, serial short stories, and bits of the novel I’ve been working on.  I would also love to have guest posts on either blog, so feel free to drop me a message.

Thanks for all your patience with me as I sort this out.  The single biggest thing that has helped me is knowing how much love and support I have.  I really do have some pretty amazing people in my life, by chance and by choice.



True (gross) confessions of a coffee drinker

Okay, so the title is a bit of an exaggeration.  I drink tea more than coffee these days, and I was never a big coffee drinker to begin with.  And really, the grossness is not something I did intentionally; it came in the form of non-dairy creamer.

Before I start, let me throw this out there:  I’m sure you have a strong opinion on non-dairy creamer.  If you don’t put it in your coffee, I’m happy for you.  But I would rather not hear your “I told you so” on this one.  I happen to enjoy some plastic in my hot beverages, okay?  Great.

Last Friday, I was out doing the weekly shopping.  We were planning on having family over for dinner on Sunday, and most of the people coming enjoy coffee.  We had purchased our Giant Box of Coffee online, which will last us until sometime in the next decade.  To go with that, I decided to try a new kind of coffee creamer.

That was a monumentally stupid idea.

Never try a coffee creamer just because it looks “interesting.”  I browsed the shelves in the dairy case, not feeling sold on the usual pumpkin spice, vanilla, and hazelnut varieties.  Instead, I picked one labeled, “Salted Caramel Mocha.”  Yes, I realize I should have known better; but I hate grocery shopping, and I was feeling antsy at being unable to decide among the other flavors.

Salted Caramel Mocha

Back at home, I realized it might not be a good idea to serve the aforementioned creamer to our guests without trying it first.  On reflection, I actually think it would have been dang funny; but I digress.  I brewed myself a nice cup of coffee in the Keurig and settled on the couch to enjoy it.

After the first sip, I nearly gagged.  The effect was stunningly bad.  Imagine with me, if you will, taking your beautifully brewed medium roast coffee and dropping in a handful of Milk Duds, followed by the entire contents of your salt shaker.  Stir and enjoy.  Awful is not a strong enough word.  Come to think of it, I’m not sure a strong enough word exists in the English language.  I won’t say it’s the worst thing I’ve ever tasted, but it was absolutely in the top ten.

Of course, I decided that perhaps I had been a bit too harsh.  After all, I had only tried a single sip of my coffee.  I took another, then another.  Nope, still just as bad.  I would like to say that I expected better of the Salted Caramel Mocha creamer; in reality, I think this is probably exactly what I had predicted somewhere in the part of my brain not adversely affected by Grocery Store Freak-Out.

When my husband came home from work, I told him what had happened.  As you may have guessed, he laughed at me.  When I described the taste, he said, “Well, at least it’s truth in advertising.  It says ‘salt’ right on the bottle.”  He recommended that I return it, since our grocery store (Wegmans) has a pretty liberal return policy.

At the store, I brought the offending creamer to the customer service desk.  In my embarrassment, I had it wrapped in a grocery store bag so the label wasn’t visible.  I apologetically explained what had happened to the young woman.

She said, “Let me guess.  Is it the Salted Caramel Mocha?”

She went on to tell me that people had been returning it left and right.  On the one hand, I was relived; clearly I wasn’t the only one who had thought it was a good idea at the time of purchase.  On the other, what does this say about the state of our society that so many of us are easily duped into buying something so dreadful, just because the picture on it makes it look good?

As she made the return for me, the employee called over her coworker to show her.  The other woman asked the question that is probably weighing on your minds: “Why on earth would anyone want to put salt in their coffee?”

In the end, I purchased a much more normal flavor of creamer for Sunday dinner.  I also learned some valuable lessons: First, salt is not a good combination with coffee.  Second, never buy coffee creamer out of desperation.  Third, I freakin’ love Wegmans.  I’m grateful for good customer service with a smile, even if it’s at my expense.

Why cancer sucks (and so do awareness memes)

This is what breast cancer actually looks like.

In the last week or so, I’ve seen an uptick in the number of people posting the latest “breast cancer awareness” meme. I think I may have sprained an eyeball after reading them. I am honest-to-goodness sick and tired of “awareness” campaigns that do nothing to either raise awareness or effect real change.

It’s not because the memes are stupid, although they are that, too. It’s because to my knowledge, cutesy, cryptic Facebook status updates don’t actually change a single thing about breast cancer’s existence.

Not only that, raising awareness by virtue of telling people, “Hey! This crappy thing is happening!” doesn’t give anyone the tools they need to address it. It would be like standing on your lawn holding a sign that said, “There are starving people in the world.” Yes, but what do you want us to know, believe, or do about it?

You know what does make a difference? Doing something. Don’t just pass around a cute meme because you think people are going to magically understand that it’s meant to make people think about breast cancer. You want real “awareness”? Then do something about it. Give to a charity. Spend time visiting a hospice. Take care of your loved ones who are suffering from any type of cancer and the effects of treatment.

I have a friend who put it this way (not specifically about breast cancer):

Cancer sucks.

That’s really all she needed to say. And then she did something: She set up a way for people to donate for research. Several other friends have run charity 5Ks, half-marathons, and full marathons. Still others have given their time and their money to charitable organizations. Many have cared for loved ones who were at various stages of their cancer journey.

I don’t need a meme to remind me that cancer sucks. Breast cancer is in my family. I lost a friend to metastatic cancer this summer. So forgive me if I don’t care what color your bra is, where you put your purse, or your shoe size and hairstyling timetable. I care about the people, both women and men, who have lost their hair, their breasts, and their lives in their fight against this menace.

If you feel compelled to raise awareness, then don’t use hidden messages. Try something like,

This month we’re raising awareness about breast cancer. The best defense right now is early detection. Remember to do your breast self-examinations, see your primary care doctor regularly, and have mammograms.

You can follow that up with links for how to do a self-exam or your favorite charity.

If that doesn’t appeal to you, then go with a personal story:

Hey, everyone, I just want to remind you that cancer sucks. Here’s my [or my friend/co-worker/ relative’s] story. Please join me in the search for better treatment options.

My friend is right; cancer sucks. Let’s do something about it.

Shame, shame

There is so much shame out there for us to use against our fellow humans.  It’s so easy to claim-and-club, to bludgeon each other in the name of making others into better people.  And doesn’t it feel good, knowing that we’re doing the right thing, the moral thing, while others wallow in their guilt?

I read an article yesterday about how restaurant portion sizes can be an issue for people wanting to have healthier lifestyles.  In the article, a study was cited in which people were given cookies labeled “medium” and “large,” but the cookies were in fact the same size.  People who had the medium cookies ate more, and it was suggested that the labeling convinced them that the portion was smaller so they could indulge.  The implication is that if restaurant portion sizes were standard (a medium soda is always the same number of ounces everywhere, for example) then it could be more effective than laws restricting the maximum size.  The article went on to mention that clothing sizes have gone down in the last 50 years, meaning that larger people fit into smaller sizes because of resizing (called “vanity sizing”).

I have no problem with the research or even the thesis of the article.  It was mostly factual, providing information.  What did bother me was the comments on the article.  It was a string of people claiming to be very thin and unable to find clothing that fits.  (I find that hard to believe, as I have noticed neither an epidemic of nakedness nor large numbers of skinny people in baggy clothes.)  In fact, the majority of the comments ran along the lines of, “Let’s not make excuses for the fat people sitting around on their lazy asses stuffing themselves with supersized fast food.”

In other words, fat shaming.

I will never understand why it’s so appealing to say hateful things on a public forum.  I’m not even talking about the stupidity here, the conflating of fat and lazy or unhealthy. I’m talking about the name-calling, the character assassination of people we don’t even know.  I don’t get the desire to verbally thrash complete strangers, as though we ourselves live flawless lives.  Nor do I relate to the underlying fears that lead us to disproportionately shame fat people as though being overweight is among the worst things one can do.

I’ve never met anyone who had long-term success becoming a better person as the result of being shamed into “proper” behavior.  I’ve met plenty of people who have become fearful and depressed and have hidden some of the best parts of themselves because they believed that they weren’t worthy of love.  Not only that, I’ve seen perfectly healthy people become ashamed of their bodies because they are curvier, more muscular, large-boned (and I mean that literally), or even because they are pregnant.  Is this what we’ve become as a society?  People who are afraid of natural variation and even natural biological function?

The thing is, I’m not even laying this one on the church.  While I think that in large part the church has a role to play (Christian “diet” programs, anyone?), that doesn’t explain why there are so many people who are not now or never have been Christians who believe the same things.  In this case, it’s not necessarily the direct actions of the church but the passive failure to act that is the problem.

As Christians, we have a responsibility to end the cycle of shame.  We need to stop buying into the lie that thinness is God’s plan for humanity or that there is any such thing as “righteous” health behavior.  I don’t mean that it’s our job just to make people feel good about themselves.  But we need to separate what society says from what God says, especially if we claim to be “Bible-believing.”  (I’ve never seen a commandment in Scripture that says, “Thou shalt be thin.”)

I’m not really a “fat activist.”  I was merely bothered by the rude and judgmental comments (along with the bragging about being too small for normal clothes; if that’s not fat shaming, I’ll eat my hat).  But if you are interested in the subject, here’s a woman who does just that.  Her blog is fantastic and she regularly gets all sorts of interesting feedback.  Check it out (and especially check out her Hate Mail page if you want to read a cross between hysterically funny and rage-inducing).

They’re Just Words

I had an eye-rolling moment this afternoon.  One of those times when you think, “You didn’t just say that.  Oh, no.  You did just say that.  Wait…really?????” and it’s also an extremely squicky moment.

I had taken S to a class and was prepared to sit down to wait for her outside the classroom.  I even brought my laptop, fully intending to get some writing done.  I found a good spot, booted up, and…yep.  Chatty Mommy sat down next to me.

Now, anyone who knows me knows I love to talk.  All right, that may be an understatement.  My husband says I need to get my 10,000 words in every day.  Writing takes care of a lot of that these days, but if I’m in the company of good friends, I let loose.

I do not love talking to complete strangers, or listening to them talk endlessly.

To be fair, I had no idea she was so talkative.  I politely asked if she had a child in the class too (hey, she could have been randomly stalking classrooms).  Right there was my first mistake.  My second was failing to turn right back to my computer as soon as she’d answered me.

For the next hour, I listened to her talk about her kids.  How they were so different from each other.  How homeschooling was proceeding for the oldest.  How she writes her reports.  Her fears about her five-year-old’s progress in reading.  And on…and on….and on…

Until she finally asked me about curriculum.  We don’t use one, though we do use a few workbooks and some other materials.  I shared that, and mentioned that I want to avoid full curricula because I want a bit more control over what we teach.  She began telling me about how she’s had to modify the information in some of the lessons.  And therein lies the squick.

This conversation is now on my Top Ten Things I Absolutely, Completely Did not Need to Know about a Total Stranger’s Children.  Apparently, she didn’t like that the health book had children learning the differences between male and female bodies and using proper terminology for male and female anatomy.  At which point she told me that her children don’t use “vulgar” euphemisms, but that her daughter calls it her “front butt.”

I thought my head might possibly burst.

I have a boy and a girl.  They share a room.  They took baths together until they were four and six, and we only stopped so they wouldn’t kill each other in the shower.  They are completely familiar with the difference between boys and girls.  They know and use the correct words for their body parts (all of them).  They are not ashamed of nudity or embarrassed about bodily functions (in a good way).  They are very comfortable in their bodies, thankfully, and I hope it remains that way.

I shared the “front butt” story with the fam at dinner.  Of course; who wouldn’t share that kind of thing over a plate of homemade lasagna?  When my husband asked S if she would like to begin referring to her anatomy as her “front butt,” she frowned at him and emphatically said, “No!”  And because we have now reverted to age ten, this caused hysterical giggling in all of us.

There is no reason why kids can’t be taught from an early age to respect their bodies.  This includes using correct terms, knowing what their bodies look like, and being aware of what their bodies can do.  We don’t need to fear that using the anatomical terms are somehow going to lead them astray; the opposite is much more likely, in fact.  They’re just words, people.  Get over it.

Being Open-Minded

For a long time, I’ve been an advocate for keeping more kids off psychotropic medications.  Not because I doubt the existence of childhood mental disorders, but because the long-term effects are unknown and I believe that parents and professionals should proceed with caution.  I am not against using medication when it is necessary and beneficial for the child.  After all, my own daughter is on steroids for her asthma, and there are well-documented associated risks.  But I’ve seen the downside of over-medicating young children, particularly when it comes to diagnosis and treatment of ADHD.

One of the problems with institutionalized learning (and a major reason why we began homeschooling almost four years ago) is the amount of time children have to be kept quiet and sitting at a desk.  For some children, this isn’t a problem.  But for others, it is absolute torture.  It may not have anything to do with the ability to focus or concentrate.  Some people are sensation-seekers who thrive on sensory input.  Others simply learn better by doing rather than hearing or seeing (kinesthetic learners).  For still others, they may exhibit traits similar to ADHD, but do not actually have that particular disorder.

I used to be a school nurse, so I was responsible for passing out Ritalin or similar medications to approximately 40 children on a daily basis.  I saw both sides of the coin.  Were there kids benefiting from the meds?  Absolutely.  There were also kids for whom nothing ever seemed to work.  Some kids suffered through repeated change in dose, type, and schedule, to no avail.  Other kids had behaviors so bothersome that I had teachers either red in the face with anger or near tears, begging me to talk to the family about “doing something” with the child’s medication.  And one story stands out in my mind vividly.

We had one student who was put on a medication trial.  For those who don’t know what that means, the physician orders two to four weeks of trial period.  For half of the trial, the child receives an actual dose of medication.  For the other half, a placebo.  No one except the pharmacist has any idea which half is which, only that the child is taking some kind of pill.  Before and during the trial, the parents and teacher are expected to keep a log of the undesirable behaviors the child has and any changes.  The boy in question underwent such a trial about halfway through the year.

When the study began, his teacher approached me and said that she was already seeing a difference in his behavior and attitude.  She was thrilled, and certain that the dose he was on was correct.  After the first two-week phase of the trial ended, she returned to me to let me know that the boy’s behavior had gone downhill again.  She hoped that he would be placed on medication for the remainder of the year.

I suspect you know what’s coming.

And you’re right–the boy had been on the placebo for the first two weeks.  Needless to say, the doctor and the parents refused to have anything more to do with medicating the boy.  He went on to have successful behavioral counseling.

Now that I’ve said all that, I have to make a confession.  We’re now about to embark on a journey with our son.  He is a wonderful kid, bright and creative to the extreme, with the soul of an artist.  He almost literally dances through life, his body craving near-constant motion.  On a good day I wish I had his energy.  But the flip side of those good qualities is that he is extraordinarily impulsive.  He reacts, rather than thinking.  His high-octane personality is not suited for long periods of seat work.  And it leads to a lot of negative consequences.

As much as I favor treating children naturally, without brain-altering chemicals, I know I have to keep an open mind.  I hope to begin with the simple, some help learning how to control his impulses.  I also know that if it comes down to it, I expect that he will be given every possible evaluation and trial before being handed a psychotropic medication.  His dad and I are his best advocates.  We want what is right for him, not a broken system where a teacher has to be solely responsible for the instruction, behavior, and well-being of 25 or more students.  We’re prepared to make some hard choices, including returning him to homeschooling to give him a break from forced seat learning.

It’s going to be a bumpy ride, but we’ll handle it the way we’ve handled everything else with the kids.  We love them, we respect the other adults, and we work toward a common goal of helping our son to grow into the person he is meant to become.

It's Not That Simple

This morning, I read another food-fanatic blog post.  Why, you may be asking, would you bother?  I was reading a blog which is not specifically about food.  I decided to peruse some of the other entries.  After I found that one, I saw the blogger had written several others in a similar vein, which I chose not to read.

I must emphasize that I have absolutely no problem with people making what they believe are healthy choices for themselves and their families.  I might find it to be a little conspiracy-theory based and over-the-top, but I also feel it’s your right to do it.  Just as it’s my right not to believe every scary “fact” trotted out as evidence of our slow deaths by government food-based chemical poisoning.

This particular post bothered me for a different reason than usual.  The blogger implied that eating a particular way (only organic, locally grown produce) was a “simple” choice.  I have to disagree, Random Blog Poster.

Not everyone has access to a great farming co-op.  Not everyone goes to the farm market and says, “Wow! Yes, those tiny, rock-hard peaches and green strawberries are a STEAL!”  But more importantly, not everyone has the extra money to buy only local organic produce (which can cost as much as three times as much in the grocery store).  And where we spend our money is hardly a “simple” matter.

For our family, being on a single income that is far below six figures, we have to choose carefully where our money goes.  At this time in our lives, we actually have to choose between buying all organic produce and supporting the missions, charities, and people that we believe are important.  For now, we are choosing to feed the hungry, clothe the naked, and support human rights.  A person might argue that we would be doing just that if we bought local, organic produce.  Maybe; but not directly, and not in the form we choose, which is by giving directly to the organizations we choose.

Making decisions about where and how we spend our money is not an easy thing.  We are living in a world in need.  I am glad that there are people out there who are concerned about our food and our natural environment.  But just as I don’t shred you for choosing produce over providing clean water, please don’t assume my choices are out of ignorance or lack of concern.  How about if instead, you do your thing and I do mine, respecting each other’s passions?  Perhaps, one day, we will see that both of us have made a difference.