To grease up or not is summer's hot question

Sun, water and kids of all ages creates a perfect summer day.

I stand out at any outdoor outing from June through mid-September. Just look for the woman covered from head to toe and in the shade, my attempt to avoid the damaging rays of the sun.

Some of my prescriptions carry warnings about exposure to the sun. Plus, as someone who overindulged in the sun as a child and teenager and has already had some sun-related skin issues, I don't like to tempt fate.

I prefer the clothing method over sunscreen when I can for many reasons, including I often forget to reapply sunscreen and I don't like the feel of it on my skin. Today, my husband shared a link that reinforces some of my ideas: Does sunscreen cause cancer?

Here are some highlights from the Ask Pablo blog post:

• More is not better as most sunscreens rated above SPF 55 offer 1-2% more sunburn rays than an SPF 30 rated sunscreen. They offer a false sense of protection.
  
• Sunscreen loses its effectiveness so replace it when the expiration date pases.
• Check the ingredients as some are known to "cause cancer. (I've got "cause cancer" in quotes as I'm not convinced we really know why some of us get cancer and some don't.)
• Look for sunscreens with avobenzone, Mexoryl, titanium dioxide, and zinc for UVA coverage. The Environmental Working Group recommends these sunscreens. Alba Botanical and Beyond Coastal top the lists.
• Limit time out in the sun between 10 am and 4 pm and  stay in the shade.
  
• The best sunscreen is the kind you wear. Outdoor clothing manufacturers are producing SPF-rated clothing to keep you comfortable and sunburn free.
• If you already have sunscreen check a nifty little database :to see how yours is rated.
• When you buy sunscreen follow Environmental Working Group's list of recommended sunscreens.

You can read the entire The Bottom Line on Sunscreens from the Environmental Working Group. The government Food and Drug Administration site also provides sun precautions.

I'm heading out on the web to see about replacing some of my clothing.

Boy with big heart, rare disease asks for and gets help, hope

Every day, someone learns how rare they are, how unique. Sometimes that rarity is the happenstance of having a disease few do. Tyler Fehsenfeld has Duchenne muscular dystrophy, a disease only about 15,000 boys have.

It's the type of diagnosis that leaves little hope for the sufferer, family and friends. It is the type of diagnosis that often makes us turn inward, focusing on finding the best options for our connection.

But, sometimes, a family is energized by joining with other families for support. They work together, using their connections, to raise money for a better life for those with the disease, for research for a cure, for somthing that will make a difference.

So Tyler is lucky. His grandfather, the publisher of Michigan's largest daily, home-delivered newspaper, and grandmother sponsored something wonderful recently.

An event orgazined around the local premiere of "The Twilight Saga: Eclipse" raised funds for research on the disease. The movie's opening on June 29 was a chance to learn more about the disease and do good while having fun.

A June 30th update from Dan Gaydou:

"Generous friends continue to come through for the PPMD cause. As of this afternoon, the total raised is $139,840; $3,120 more just since last night. Thank you everyone for your support and God bless you."

The Grand Rapids Press published an article online that will help you learn why I called Tyler a boy with a big heart, a boy who may never celebrate a 30th birthday. The western Michigan news operation followed up with "Mission of 'Twilight:Eclipse' movie premier party was clear: End Duchenne (You'll find a video, photograph and more about the event, organized by Anessa Fehsenfeld, Tyler's mom.)

Gaydou asked his Facebook friends to help promote that event in hopes that many would attend the premiere.

(Sorry, I'm late - it is one of the posts I forgot to publish. But you still can contribute and at least be aware of the disease. You can donate online or send a check  payable to Parent Project Muscular Dystophy to Dan Gaydou at 155 Michigan NW, Grand Rapids 49503.).

The boy's father once was the Newspaper In Education coordinator at The Flint Journal.

The family has tried many things. In 2006, the family rocketed into the spotlight when the federal government delayed delivery of Deflazacort, a medicine approved in other countries but not in the United States.  A U.S. specialist had prescribed the drug.

"I'm choosing to give this drug to my son that a doctor says he needs, and my country says he can't have it," Anessa Fehsenfeld is quoted The Grand Rapids Press in an April 5, 2006, article. "As if the diagnosis isn't bad enough, and then you have this to deal with."

The options for treatment are few. The Internet has helped many parents to connect, including the Parent Project Muscular Dystrophy site which offers ideas, hope, support and more.

Still, it takes funds for that and for research. That's where events like Run for Our Boys and this western Michigan fund-raiser give help and increase the amount of hope.

Green tea failure? Or payback for pill-popping post?

I am drinking so much green tea you would think I would turn green!

Alas, it seems my holiday tradition continues since I woke up with a throat that feels as if I have swallowed razor blades the last 24 hours. I WILL be fine by Sunday (hear that body, I WILL).

Meanwhile, maybe you will have better luck with this supposedly magical potion.

(Oh no. Do you think I am being punished for my blog post about understanding why someone might want to skip the potions, pills and prescriptions? Could it be karma? Or is it my family physician is lonely since I keep postponing some tests and visits. mmmm. I'll ponder that while farming)

Note: Yes, that illustration is from the FarmVille game. Yes, this post was started over on FarmVille.

Assumptions almost made me, others miss beauty, inspiration

Sometimes even wearing my glasses is not enough help to see the most wonderful stories. Lucky for me I know people who share so that I know more about epsilepsy and indoor kite flying. (Look before you laugh.)

It is a co-worker connection that led to the sharing of this video clip (below) over on Facebook and in Free From Editors.

You don't need that hook because this clip stands on its own. Watch it for the story. Watch it to see a mother's love. Watch it to see how one moment, this moment, matters.

I confess that I noted the co-worker connection and almost moved on without clicking because America's Got Talent is not one of the TV shows I value. Blame that prejudice on reading the fine print too may times, uncovering the scams or "real story" too often.

I clicked because I wanted to see how Tim Doran has fared since he left his job at The Flint Journal (see below the video). The story of why his son, a high school student, has perfected the art of indoor kite flying, yanked tears out of me. The gracefulness of the kite flying surprised me, calmed me, enveloped me in quietness.

And then there's the music that his son chose to play while making the kite dance across the stage in Oregon.  Sarah McLachlan's Angel, first recorded in1997 and covered by many, only emphasizes the story that many will miss because, like me, they don't watch these types of television shows.

How can you not relate to lines like this:

"... There’s always one reason
To feel not good enough"

As always, I find it interesting to see what unfolds with a find like that. It moved through Facebook rapidly, found its way into at least six blog posts, and now the video is on the front page of the Epilepsy Foundation's web site. and discussed in its forums.

Not bad for a piece of fluff.



Tim, who worked at The Flint Journal in Michigan, lists became managing editor of The Bulletin in 2003 on his LinkedIn profile. Bend, Oregon. Staff sheet now lists the 1988 University of Missouri-Columbia graduate as business reporter for the newspaper printed by the Western News Company and I didn't see a managing editor's job listed. Follow his business news tweets on NewsInBender. 

A web search shows that he's stayed active in pushing for the freedom of information, including a stint on the board of Open Oregon and active in the Sunshine Week push.

Watch for another post on the Doran family soon. Meanwhile, another video of Connor's kite flying.

So how many of my friends in the US took part in the holiday tradition of filling their tanks on Wednesday BEFORE the traditional raising of gas prices that seems to ALWAYS come just before the start of a three-day weekend?

I forgot but that is OK because I'm not traveling. Nope. I am staying home and having folks over.

I'm almost done with food preparations so I won't have to cook (he-he) and I'm about to lay in a stock of paper products even though my husband already believes I must have lost the brain cells that remind you exactly how to load and unload a dishwasher so he does it 99% of the time (he-he).

Ah, summertime and the living is easy.

Note: This post began its life on FarmVille, when I "found" fuel while plowing and shared with farming friends. Why should they have all the fun of reading my posts, eh?

Living through excuses erases opportunity to "yell"

I remember being shocked that anyone still needed a reminder to finish an entire prescription of antibiotics.

It was beyond believability that a multiple sclerosis patient would ignore the opportunity to postpone relapses to avoid nightly injections.

Don't get me started on the rant about following the instructions on a prescription - you know, the ones that suggest eating certain foods render the drug useless or dangerous.

It always was easier to understand why some chose to eat rather then buy medicine. Even with insurance some drugs require an impossible hefty payment in days of layoffs, leaky roofs and lingering financial obligations to feed your famly.

I remember being baffled at the weariness on my aunt's face as she sat at the kitchen table and worked her way through a shoebox of pill bottles. These were the pills that kept her disease under control, that enabled her to walk with less pain, that might give her more time here with us.

I loved her puffy face. I adored her cane, so useful for pushing items and fun to twirl. I liked her long, floaty dresses that spelled freedom so much better then miniskirts or shifts or polyester pants.

But now, with the wisdom that comes with age and experience, I understand so much better why some days the puffiness, the cane, and the dresses were/are burdens, obstacles and sacrifices.

I understand the weariness of working your way through bottle after bottle of prescribed medications. I understand why the possibility of promises in the pills may not be worth the side effects or even the time that it takes to take them, to order them, to pay for them.

Is it really necessary to self inflict the sharpness of the needle on a night when staying awake is preferable to sharing a mattress moved by another body? Why would one dose make a difference? Show me the research.

Can one grapefruit really hurt? How can it be bad to try to calm the burning sensation with the dryness of Saltines an hour before food is allowed? Why should one more tall glass of water be necessary in a body already retaining enough to require a bigger shoe size most days?

If I stop taking the medications, can I pretend that everything is all right? Just for tonight? Just for awhile? Just forever?

What if I apologize to all those I judged for choosing medicine vacations? Does that earn me the right to hide all the bottles, donate the blue box of Copaxone to someone or stop ordering the endless supply of symptom suppressors?

If I promise to never "yell" or critique the medical habits of others can I slide on some of my own?

Summer heat tends to worsen my multiple sclerosis symptoms so I know that is why I am not recovering as fast as I once did.  I will not listen to the whisper that I've recovered as far as I will and this is the new stage of remitting. I have too many miles to cover, too many things to read, too many quilts ... well, you get the idea that there is much to do on my list of musts.

Our household shrinks

Daugther's chalk drawing of the dog 
hangs in our living room.

It is a work day so that means I am home alone. Really alone. As in the dog that has lived in this house almost as long as our family is gone.

The disappearance was not unexpected. I think it hurt my husband that four hours home from a conference I still had not mentioned her absense.

I'm more then OK with Amy's leaving as it was painful to see her stumble, to ache, to get so little pleasure from life, to play tag vigorously and then move slower with no grace.

The lack of a dog means I move around less because I don't need to open and close the door a zillion times for a dog whose bladder and/or memory was bad.

The lack of a dog means I can leave all interior doors open, the toilet seat lid up, and food on any counter or space that I want.

The lack of a dog means no one eagerly eats what I drop, licks my laptop or knocks over my piles.

The lack of a dog means I don't need to leave on a light at night, trip over water or food bowl or sleep lightly so I  heard the scratching request to go out and not make my husband get up.

The lack of a dog eliminates the need to sweep up the hair, may reduce the number of required allergy shots and might save the household a few bucks in vet bills, food, medicines, lodging, etc.

What was good about the dog was the delight it provided my husband and daughter over the years. They loved the dog from the day they picked her up from the Genesee County Humane Society. They played with the dog, provided for the dog and trained the dog.

The dog was a reason for dad and daughter to play outside, to walk outside, to talk.

Amy's exploring gains her collar
of trash can lid

The dog helped ease the transition from city to suburbs for my daughter when we moved in the midst of a middle-school year.

The move was sparked by anger that her school (or the local newspaper) did not see the setting of her hair on fire in a classroom as a big deal.

The move meant we finally had a back yard bigger then a sandbox, removing the excuse for not having a dog. The dog helped as we adjusted to a lifestyle without  museums, the library and friends within walking distance.

The dog helped ease the transition of losing our daughter twice now to a community 624 miles away for my husband.

The first time she left for a household that already had a dog and so left "her dog."

The second time she left it was clear "her dog" was her dad's dog now. Plus, the move would be tough on the rapidly aging dog who already seemed to forget where she was or what she did. Besides, our daughter had another dog of her own.

This dog was the third in my life. I barely remember the first - an Irish settler that lived outdoors. The best thing about the second dog was its litter financed a dishwasher for my family. That was almost enough to forgive her for throwing up in my shoes.

Almost.

Amy never needed forgiveness.