My Invisible Chronic Illness

I am a diabetic. My friends and family know this about me, but to the rest of the world, those I choose not to tell, my illness is invisible. That’s the way I like it.

But today, I read a post on the blog of a fellow participant in the month-long haiku-a-day challenge on Haiku Heights, and I realized that “coming out” might help someone else.

The week of September 10-16 is National Invisible Chronic Illness Awareness Week. As a part of their campaign, they have designed a 30-question meme called “30 Things You May Not Know about My Chronic Invisible Illness.”

This is not something I normally do. I blog to write: fiction, poetry, and non-fiction creative pieces. But I seldom blog with one of these questionnaires. When you get to question 29, you’ll know why I did it this time.

So…

1. The illness I live with is: diabetes. It runs in my family.

2. I was diagnosed with it in the year: 2001. Most diabetics are on insulin about seven years after diagnosis. It’s been eleven years for me, and I don’t yet need insulin.

3. But I had symptoms since: This is one of the deadliest things about this disease. There are no symptoms.

4. The biggest adjustment I’ve had to make is: I watch everything – everything –  I eat and make choices based on how food will impact my glucose levels.

5. Most people assume: that I am just like them.

6. The hardest part about mornings is: I have what is called “dawn syndrome.” I begin each day with glucose reading that is too high and have to work from there.

7. My favorite medical TV show is: I like several, but it has nothing to do with my illness. I just like them.

8. A gadget I couldn’t live without is: my blood glucose meter. Maybe literally.

9. The hardest part about nights is: occasional insomnia. I have no idea if it is related to my diabetes, but I never had before I was diagnosed, so…

10. Each day I take 27 pills & vitamins. (The instructions say “No comments, please,” so I’ll refrain… until the next question.)

11. Regarding alternative treatments: “Treatments” for me are all in my control. I am not on insulin, and take only two pills a day to control my diabetes. But those other 25 pills? Some are doctor-prescribed to ward off known risk factors of the disease. But most are supplements some believe will help with glucose control, and are perhaps a little weird. For example, I go through the day with cinnamon breath. That’s not such a bad thing, right?

12. If I had to choose between an invisible illness or visible I would choose: neither, obviously. But since I have to choose, I’d say invisible.

13. Regarding working and career: I was closing in on retirement when I was diagnosed. The adjustments I had to make were all dietary so, in general, it didn’t interfere with my work.

14. People would be surprised to know: diabetes can be a bit of a blessing in disguise. I eat a much healthier diet and get more exercise now than I did before.  Other than the diabetes itself and cranky knees, I may be healthier than I was 15 years ago.

15. The hardest thing to accept about my new reality has been: never losing sight of the consequences of letting down my guard just because I feel OK. Diabetes can cause some really horrific things to happen to your body.

16. Something I never thought I could do with my illness that I did was: to indulge in sweets now and then. I grew up watching diabetics make huge sacrifices, never eating anything sweet and substituting those foods with nasty-tasting alternatives. I’ve learned that’s not necessary. Oh, and I walked 30 miles over two days in the Avon Walk for Breast Cancer. 30 miles! Who knew I could do such a thing!

17. The commercials about my illness: Commercials? What commercials?

18. Something I really miss doing since I was diagnosed is: There’s not really anything I’ve had to give up that I miss. I suppose I might say that it would be nice to just be without the constant vigilance, but really? It’s not so bad.

19. It was really hard to have to give up: See # 18.

20. A new hobby I have taken up since my diagnosis is: hiking, when my creaky knees permit.

21. If I could have one day of feeling normal again I would: Meh. I already feel normal.

22. My illness has taught me: you are what you eat. Really. And you can do anything if you put your mind to it.

23. Want to know a secret? One thing people say that gets under my skin is: not much, except maybe the things the would-be (non-medical) “experts” have to say. I’d rather they kept their opinions on what I “should” be doing to themselves. Diabetes is a challenge for even the real experts because everyone has a different experience.

24. But I love it when people: don’t suspect that I am anything but a healthy person.

25. My favorite motto, scripture, quote that gets me through tough times is: “I can do this.”

26. When someone is diagnosed I’d like to tell them: Learn as much as you can. Read, read, read. Ask questions. Pay attention to your body. Take control.  You can do this too.

27. Something that has surprised me about living with an illness is: It’s not as bad as I thought it would be. When I was first diagnosed, I’d walk through the grocery store feeling like there was nothing good that I could eat. I’ve gotten over that.

28. The nicest thing someone did for me when I wasn’t feeling well was: I am a controlled” diabetic. So far, I feel fine. It doesn’t hurt, thank heavens. But if (when?) things begin to go wrong, and odds are they will, I hope people will understand and accept.

29. I’m involved with Invisible Illness Week because: The National Institutes of Health (NIH) and Center for Disease Control (CDC) estimate that 6.5% of adults over the age of 20 living in the US have diabetes, and that number is on the rise. Remember I said diabetes has no symptoms? One third of them don’t know they have it. Many of those who do know they have it don’t do anything to control it because they feel fine. Make no mistake. Diabetes is a killer. But it doesn’t have to be.

30. The fact that you read this list makes me feel: hopeful. Odds are you know someone who is a diabetic or will be. It might be you. You know what to do.

A Trip to the Far Side

Many of us are the children of parents who lived through the depression. Like all parents, ours wanted us to have a better life.  They brought us up to be frugal, to save, to “put something aside for a rainy day.”  And being the good children we are, we tried, peeling a little away from the paycheck and sticking it in the bank. Back in the day, not only did we not spend those savings, we watched them grow.

Today? Not so much. The latest statement from the bank tells us that our little nest egg is earning about one tenth of 0ne percent a year, if we’re lucky and that money is working really hard. But if our hard-earned money is hanging around up on the street corner with Bank of America, it’ll only make .01% interest oi a regular savings account. But wait; there’s hope. If we find it a job in BofA’s “Growth Money Market” (hey, I like the sound of that word “growth”), it’ll earn a whopping .05% interest.

Geez, that’s hardly worth it. Might as well let the nest egg stay at home under the mattress or watching soaps and eating bon-bons.

Or…

If you’re one of the 1%, why not use some of that money — it’s just laying around like the rest of those lazy unemployed dollars, after all — and have yourself an adventure! Yep, have we got a a fantastic trip to the far side for you! Here’s what you do.

Pay a visit to one of Virgin Galactic’s “accredited space agents.” In exchange for just a pittance of your lay-about money, he’ll sell you a ticket for a 2-hour journey some 60 miles straight up on a “futuristic craft known as the SpaceShipTwo.” The price? A mere $200,000.

(Source: New York Time article, worth the read)

Two hours and 60 miles sound too tame for you, Intrepid Rich Guy? No worries. Go see Excalibur Almaz, a company that will send you on a week-long adventure to a “gravity neutral point near the moon.”  A bargain at about $150 million. What the heck, it’s not doing you much good just laying around doing nothing, is it?

Interested?

Happy Times in Ticky Tacky Town

(stock photo)

A few days ago, a writing blog I participate in asked for a poem about a neighborhood.  Between the ages of eight- and twelve-years-old, I lived in Houston, Texas in a  place that defines the word “neighborhood” to me. There was no  neighborhood I could write about other than that one, and so I did, on my fiction and poetry blog, Pattiken and the Muses:

Boomers

In retrospect, that Levittown-like neighborhood seems pretty awful. I’m reminded of the Pete Seeger song, Little Boxes.  (http://people.wku.edu/charles.smith/MALVINA/mr094.htm)

Little boxes on the hillside,
Little boxes made of ticky tacky,
Little boxes on the hillside,
Little boxes all the same.
There’s a green one and a pink one
And a blue one and a yellow one,
And they’re all made out of ticky tacky
And they all look just the same.

John Mellancamp did one too. His was called Little Pink Houses. (http://www.lyricsfreak.com/j/john+mellencamp/pink+houses_20074447.html)

 Oh but ain’t that America for you and me
Ain’t that America somethin’ to see baby
Ain’t that America home of the free
Little pink houses for you and me

Ticky tacky little boxes, maybe, but at the time, I loved it. There were kids my age (give or take a year or two) in all the houses, and we came of age together.

It was there I had my first boyfriend, my first date, my first dance, and my first kiss.  There I got to wear the coveted “straight skirt” for the first time with flats rather than mary jane shoes with socks. Oh, and when someone brought out a Pageant magazine with pictures (!), it was there I learned where babies came out. That one almost scarred me for life.

It was a magical time.

***

Special thanks to my Aussie blogging friend Selma. This post began as an email to her about Boomers. As she often does, she inspired me.  Visit Selma at her blog Selma in the City. You’ll be glad you did.

Who Knew?

White Ox at Siena by John Singer Sargent
(Source: WikiPaintings)

Did you know that an ox is a castrated bull? You did? Geez, I guess I wasn’t paying attention the day they covered that. I always thought oxen were their own breed of animal.

Huh.

Makes sense, I guess. Still, it makes gives me pause. Is a buffalo really a cow born with a deformity? And what about a water buffalo? Is that a cow with a drinking problem?

You make your way through life with all these preconceived notions, certain of your understanding about the nature of things.  And then one day, wham. You discover that an ox (mighty though he is) is just a very unhappy boy cow.

It makes you wonder what other incorrect beliefs are clouding your thinking.

In a Snit

I recently told a blogging buddy, and now good friend, that I have been walking around lately in an all-around pissed-off mood. Yeah, I know, not very “ladylike,” but there it is.

Frankly, I’m tired of being in a bad mood, so I’ve been doing that cognitive thinking thing a therapist suggested years ago. “If you’re worried or angry in general —  you know that free-floating anxiety that comes over all of us from time to time — look for the reason. and deal with it.”

According to the good doctor, the cause could be as simple as the dream you had just before you woke up or a passing comment someone made that got your anxiety machine cranked up. So I looked around for a reason for my snit (the great word my afore-mentioned blogging buddy used).  It seems to be related to one question. Maybe if I verbalize (another favored shrink suggestion), I’ll feel better.

Why do we blog in the first place?   When we take the time to write something, whether it’s fiction, poetry, non-fiction ramblings, or a rant… Why do we do it?  And why do it on the internet instead of in a journal? Well, folks, I can think of only one reason. We want others to read it. I mean, what other reason could there possibly be?

If I am a regular visitor to someone’s blog posts, it would be nice if they came by my place once in a while in return. A fellow blogger (one I mistakenly thought of as a friend – silly me) told me he and his friends laugh at this attitude, calling those of us who admit to wanting visitors “Comment Collectors” or “Follower Fishers.” Huh. Well, okay, guilty as charged.

I participate in a lot of memes, aka writing prompts. Nearly all of them ask that, as a matter of courtesy,  participants visit the efforts of the others and leave a short comment or bit of feedback. And for the most part, participants do that. Oh, sure, some of the sites can have over 100 links to a single prompt, and none of us have the time (though I can think of one extraordinary exception) to visit them all.  But if I’ve taken the time to visit participants on a meme, I’d like to get a return visit from at least some of them.

So, yeah, call me a “Comment Collector” if you want. But if you don’t post on a blog so people will read it, what the hell are you doing out here? Get some paper.

***

Okay, that didn’t help much. I’m still in a snit.

What’s your thinking on this?

A Letter to Mom

Dear Mother Nature,

Last Sunday was Mother’s Day, and it occurred to me that I hadn’t thanked you for everything you’ve given me in a really long time. Like  forever. It’s not that I’m unappreciative. You know how much your generosity means to me. How could you not? Mothers know things. But as a mom myself, I know that a word of thanks is always welcome.

Thank you for all you give to me, but especially for these favorites:

• Springtime – I love the newness, the tender greens and buds on trees, the welcome caress of a warm breeze after the harsh winter chill.
• Baby animals – kittens, puppies, foals, tiger cubs, even baby rhinos… I love all baby critters, when they haven’t quite learned to be anything but babies, happy to be alive.
• Palm trees -the susurrus of the fronds, rustling in the quiet night, has got to be the best sleeping aid ever. Ambien’s got nothing on you, Mom.
• Fruit – sweet and tart, crisp and juicy, soft and luscious; it makes my mouth pucker in happiness just thinking about it.
• Forests – I never knew the secrets you hid in forests until I started hiking there. Ssshhh… Don’t worry; I won’t tell.
• Cheese – I need say no more.

There are so many more things I’m thankful to you for, but like I said, you know that. While were talking, though, I wonder if you’d consider a few changes? Nothing drastic, you understand, just a few product tweaks for future production.

• Could we lose the papery stuff on the outside of an onion that sheds all over the place? And while you’re at it, maybe remove whatever it is that makes me weep? (Though I must admit that weepy bit is really good for pity points when I’m slaving over a big meal.)
• Mud season – what could an I say that “yuck!” won’t cover?
• Cockroaches – especially the flying palmetto bug type. My dad told me they love moist, dark places and I sleep with my mouth open. I’ve never been quite the same after that. Besides, haven’t they had way more than their share of time on the planet?
• Tornadoes – I mean… really? Yelling at us now and then is to be expected. You are a mother, after all. But isn’t that a bit of overkill (sometimes literally!) in the punishment department?
• Superbugs – I’m talking about the ones the docs call MRSA. It’s a sad state of affairs when healing places become the most life-threatening places you could go. Seems like the newspapers report a new case almost ever day. And if one of these get you, you’ve got a 70% chance of leaving in a box. One almost got me. Enough said.

So, thank you for everything, Mom, and give a thought to my suggestions. And, oh, it’s a little late, I know, but…

Happy Mother’s Day.

Love, Patti

Birds Do It…

(Photo credit: AP Photo/Jeff Chiu)

… bees do it
Even educated fleas do it
Let’s do it, let’s fall in love

Wish I’d seen this four days ago, but… Oh, well, Happy Belated Valentine’s Day.  Or Very Early Valentine’s Day. Whichever works for you.

Just Call Me Rock God

“From now on, I’ll call you Rock God, OK?”

If these words sound familiar, it’s because you have been eavesdropping on one of the many intimate conversations that people are having with… their phones. On nationwide TV.

Geez, get a room.

I don’t know… I find this faintly worrisome. Here these folks are — a couple sharing a beautiful beach, the boy wondering if he’ll get a snow day off from school, a man traveling across the country to visit his lady love, the kid who has just played a perfect set with his garage band — and who do they tell about it?

Their phones!

Is this the end of relationships as we know them?

As If

While it’s true that no one would (or did) call me a “fashion plate,” when I was of the age to care about such things, I was usually au courant.  My style was perhaps a bit unconventional occasionally, but never over the top.  I was never one to go to extremes.

(Well, okay, maybe some of those skirts were kinda short, but that was the style of the day, right?)

Now that my style is more casual (one might call it haute comfort), I seldom see anything in the fashion world that tempts me to pull out my haute couture self for one more sashay down the runway.

Could this be the exception?

As if.

Traveler, Beware

Do you routinely travel with your computer bag slung over one shoulder? A glance around any airport will show that many business travelers do these days. As if the whole process of air travel weren’t fraught with enough indignities, an article in today’s Boston Globe describes another, one that is new to me, thank heavens.

In her article, Laptop Seizures at Customs Cause Thorny Legal Dispute, Globe staff journalist Katie Johnston describes the plight of some travelers returning to the US after a trip outside the country. It seems that when they came though US Customs, their laptops were unceremoniously seized by Customs officials.

Writing about the experience of David House, a traveler returning to Chicago after a working vacation in Mexico, Johnston says, “They didn’t have a search warrant. They didn’t charge him with a crime. And there was nothing House could do about it.”

The government kept House’s computer for 49 days!

Sound like something you’d never expect to see here in the US? Yeah, that’s what I thought too. Seems we were wrong.

“As long as they don’t use invasive techniques such as strip searches, government agents don’t need reasonable suspicion or probable cause to seize what they want – including laptops, a 2008 appeals court ruling held,” Johnston reports.

According the the article, this seeming violation at US ports of entry of our 4th Amendment protection against unlawful search and seizure  is  what civil liberties activists are calling “Constitution-free zones.”

Yikes.