Friday, October 28, 2011

Fall Break and Other Lovely Things

Before there were teenagers. . .
Before there was rheumatoid arthritis. . .
(Lovely photo of me, I know!)

Before we even knew what celiac (or a blog) was. . .

My travel-loving family began spending Oklahoma's October fall-break at a cabin at Tenkiller State Park. Three or four beautiful fall days of relaxing with our kids. Pretty soon RA came along--you can see my cane in this photo.

We went almost every year, no matter what (one year we had to go to a different park because I couldn't get reservations at Tenkiller). We hiked and waded.

Let the kids go fishing off the little dock and help build campfires.


We played together and built a tradition and they grew up.

These last five photos are from last year. As time grew closer for fall break, it became apparent that we were not going to be taking any trip. Some new health problems cropped up for me and we had to stay home. My older daughter is in Japan, but my younger two were amazingly flexible.

We did manage a round of chicken foot before the weekend was over. They even let me win.  

And the kids and I did a little talking, in light of the discouragement we all felt about having to stay home. We've had lots of good years on our camping trips. And hopefully we will again. But this weekend was good, too, in it's own way. And we were together. And we enjoyed each other, which is what the weekend has always been about.

This verse keeps coming to me, in different ways, in different settings, over and over again. It applies here. Not dwelling on the difficult, but on the happy times. And we have had so many happy times. So glad my teenagers still want to be together, whether it is at the lake or at home.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.  Philippians 4:8

Thursday, October 20, 2011

Shel Silverstein. . .And taking out Garbage

Sarah Cynthia Sylvia Stout
Would Not Take the Garbage Out
by Shel Silverstein

Sarah Cynthia Sylvia Stout
Would not take the garbage out!
She'd scour the pots and scrape the pans,
Candy the yams and spice the hams,
And though her daddy would scream and shout,
She simply would not take the garbage out.
And so it piled up to the ceilings:
Coffee grounds, potato peelings,
Brown bananas, rotten peas,
Chunks of sour cottage cheese.
It filled the can, it covered the floor,
It cracked the window and blocked the door. . .
(more gross garbage here)
The garbage rolled on down the hall,
It raised the roof, it broke the wall. . .
(and still more--wonderful stuff!)
At last the garbage reached so high that finally it touched the sky.
And all the neighbors moved away,
And none of her friends would come to play.
And finally Sarah Cynthia Sylvia Stout said,
"OK, I'll take the garbage out!"
But then, of course, it was too late. . .
(more about how far the garbage reached)
And there in the garbage she did hate,
Poor Sarah met an awful fate,
That I cannot right now relate
Because the hour is much too late.
But children, remember Sarah Stout
And always take the garbage out!

I woke in the middle of the night last night reciting this poem from my childhood. My sisters and I loved Shel Silverstein and Ogden Nash, and threw the poems back and forth like bouncing rubber balls, laughing at the rhymes, memorizing, competing for who knew the most lines and poems. There were other authors, too, but those were our favorites. My children, I believe, have grown "Sick" of the endless repetition of the poems. They never quite caught the bug, though not because I didn't try. 

But since I was awake and thinking and all, sort of, grown-up now, this silly poem began to mean something different. It formed over the next hour as I thought about it and knew it was my blog for today. Have I failed to take my garbage out? Is that why it popped into my mind?

I've put off a few apologies. Left some kind words unsaid. I pushed health concerns to the back of my mind, with consequences I never imagined. I've let friends drift. I overlooked some shortcomings in my own life because it was easier. Small things accumulated, like piles of old magazines. 

Garbage piled up.  
Maybe it's time I take the garbage out.

"Rejoice in the Lord always. I will say it again: Rejoice. Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:4-7

Here's a link to the entire poem, Sarah Cynthia Sylvia Stout, which which comes from Shel Silverstein's collection of drawings and poems, "Where the Sidewalk Ends," Harper Collins, NY, 1974.

Wednesday, October 12, 2011

World Arthrits Day--The Truth about Me

Today is World Arthrits Day. Bloggers around the world are telling their arthritis stories--and they are telling them for a reason. They are telling them because they want the world to know, to understand a little more what it means to have autoimmune arthritis.

Not osteoarthritis, and not because that is not painful, but because there is a difference. And they, we, want you to know about it. Because it is frustrating when you don't know. It's frustrating when people act as if we are somehow to blame for our disease or that our disease is not serious.

A few weeks ago I posted a link to an article called "An Identity Crisis for RA" by R. Franklin Adams, M.D. in the September 2011 The Rheumatologist.

He begins "Despite the numerous advances in treating rheumatic diseases over the past few decades, a major communication gap still exists in the community regarding the complexity and gravity of rheumatic diseases."  I hope you read that article.

I have rheumatoid arthritis. I was diagnosed when I was 38 and I am now 43. I've told parts of my onset story before, in this post for Invisible Chronic Illness Week.  And now I've got a bit more to say.

Rheumatoid arthritis is an autimmune disease. To put it simply, my body is at war with itself. The parts that should defend me are instead attacking me. My body is actually destroying my joints. It's not that I was overweight or smoked or even that I had too much stress in my life. I know those are all things you might have heard--and after I came down with RA those things could make it worse. But by themselves, those things cannot cause RA.

You see, really, I hit the genetic lottery. My paternal grandfather had RA. My mom had JRA. Like many autoimmune diseases, RA genes remain dormant until somehow triggered. And sometimes they never are. Scientists don't yet know all the details of why the genes get turned on.

At 38, I weighed about 130 pounds. I was healthy. I was enjoying my life.  I remember at the time feeling like I was at an especially blessed place.  I was probably working a little too hard, pushing the working mom thing a little harder than I should have been. But I was really, really loving it. I remember noticing my feet hurting more than they should have. I mentioned it to a friend. She remembers worrying about it from afar. In the spring of that year, during a big project, I came down with the flu, then pneumonia, then shingles. Three months later my joints exploded, or so it seemed to me.

Were those infections the trigger for my first big RA flare? Or did the lurking RA leave my body vulnerable to those infections?

A giant flare built within a month or so. I was quickly diagnosed, probably quicker than most people. An almost classic case even if I am seronegative (my bloodwork is normal). 

And what has happened since then? A happy ending as the RA biogolic commercials would have us all believe? Not really. I slowly reduced my hours at work and finally stopped working. I have the most Wonderful Employer. And now I work a bit from home, but even then it's often a stretch for me to keep up with an hour or so a day and the mom gig. I've hardly been off prednisone over the last 3 years. All three of my children are celiac/gluten intolerant, and I feel a very strong need to keep up with grocery shopping and cooking to keep them healthy and attend their events. Without prednisone, I just can't seem to manage.

Two biologics--those oft advertised and extremely expensive RA meds--stopped working, and it looks like another is on its way out. I have had repeated rounds of shingles--the painful virus that kicked off my travels into the world of RA now seems to be a semi-permanent traveler with me. I have hardly been able to express in this blog the despair and difficulty that this has caused for me and my family. Most of the time, I'm not sure which is worse, the RA or the shingles. Over the last year I have gotten weaker and weaker from the repeated bouts with this cantankerous virus.

My flares seem less severe since I started eating gluten-free, but my feet, hands and hips are a constant source of frustration. Walking very far or doing very much house work with my hands causes a flare, and then it takes weeks for them to be normal again. I need help with chores that involve things like scrubbing or repeated motions.

And so now the hard truth: My life is much different than the way I once envisioned it. Since my meds aren't working great right now, I don't do much volunteering. I don't attend many functions at night. I miss out on most of the social aspects of my old life. And I miss that more than you can possibly imagine. I thought, right now, I'd be working, teaching Bible classes, helping with my kids school activities, working with marriage classes (something my husband and I loved doing before), traveling with my husband. There are blessings in this quiet life, don't get me wrong. But it is not the life I imagined.

Often people look at me and think I'm well because I'm dressed and smiling. I don't explain because it's just too hard.  I write this blog to preserve a little sanity.

Even my husband says he can't always tell how I feel by the way I look. That's why it's called an invisible illness. But most illnesses are invisible, aren't they? Can you tell someone has cancer by looking at them? Or diabetes? Is it fair to assess my health status or tell me you know so-and-so who has it so much worse than me? How would you know that?

And so I'll end with this. I am not in general a "cause" person, but I'm  happy to write for this one. Because this one benefits not only me but also my daughter  and so many beloved friends and blog buddies that I've come care about.

Autoimmune diseases are in general misunderstood. Take a little time today to understand. To listen instead of assume. You might be surprised at what you don't know.

130-38-43  My numbers--My weight and age at onset and now. Look for them today on Facebook as others with RA post theirs.

Share your numbers and onset today here or on facebook. Spread the word about the differences between osteoarthritis and autoimmune arthritis. Or share a friend's.

Tuesday, October 11, 2011

My Traveler. . .an Update

Today's post is for those of you wondering about my traveling girl!
Goodbye America!
She is a college sophomore and her adventures began in Beijing, China just over a month ago. I don't have many pics--just a few from her iPhone or those someone has posted on facebook occasionally. China has pretty tough restrictions on the internet, so the group was limited to scattered internet cafes.

But from what I've heard so far, she had a wonderful time there--two weeks at Capital Normal University and then two more weeks of travel in the country, and now she is in Japan.

The group at Capital Normal University
At the Terra Cotta Warrior Museum in Xi'an Province
And how did she eat, since she can't eat gluten or dairy, and she's allergic to a few other things as well (strawberries, apples, peanuts, and shrimp)? I know she'll have tons of stories to tell when she gets back, but it sounds like in China she ate a lot of. . .rice. There were places where her dining cards worked well, and places where they didn't. She took packets of tuna and lots of gf snack bars with her, so I know she supplemented with those. She told me her group has been so kind to find places where she can eat, too-- they feel like family.
Hot Pot lunch--She said this was one of her favorites!
I'm so proud of her for going on this adventure, even knowing eating and getting gf food would be hard. I'm glad she didn't let the difficulty of eating in China stop her--that she just took it in stride. I'm proud of her for having a good attitude about it--and for being brave! She fell down some stairs at a farmer's house in Xi'an and sprained her ankle--but as far as I know, she didn't get sick from anything she ate.

She's in Japan now and says eating is much easier. They traveled for a week and now she's settled in with a family where she'll be for a month. More about that in another post.

Thanks again to Jen at Gluten Free Kids Travel for some of the best advice we found about gluten free eating in China. Thanks to her we knew Hannah COULD drink the Coke, should look for sushi for something safe to eat, needed to be careful about the salt shakers (they add msg there, which usually contains gluten in China), and in general should be aware of everything else! Keep blogging, Jen!

And tomorrow--look for my post about World Arthritis Day!

More posts in this series: China, at Last!   More from Travelin' Girl! Japan  The End of My Girl's Trip! New Zealand and Australia

Tuesday, October 4, 2011

Gimpy. . .but Grateful

Since my youngest two started high school this year. . .

I have been meeting myself coming. . .

And going. . .

And having a great time--though I'm a bit gimpy along the way.

And that’s why I’m grateful. I’m grateful that I’ve been able to do it. On the day above, I had to put Lidoderm patches on the soles of my feet to be able to walk the course and take this picture. But I was there! A friend of mine, with an amazing camera and photography skills, took the picture of my daughter and her percussion friends. My skills are not so amazing--but I was there.

My husband had to be out of town for nearly two weeks, but with the help of friends and two good-natured kids, everyone ended up where they were supposed to be, everyone competed and ate and got to bed at night and to school the next morning.

And I am grateful.