Wednesday, August 31, 2011

Best RA Article I've read lately. . .

Busy this week getting oldest daughter ready to leave for semester abroad, but sat down for a few minutes to look at some blogs and clicked RA Warrior. There I found a link to one of the best articles I've read lately about RA. I sighed with relief. I almost cried. You mean there is a doctor out there who understands?

The web is absolutely overrun with patient blogs who talk and rant about the need for change in the RA world, but then I go back to my rheumatologist, see the same RA commercials, hear the same yada yada from the Arthritis Foundation about diet and exercise, and deal with, as The Single Gal's Guide to RA calls it, The Loser Disease.

If anyone is listening, it certainly doesn't feel like it. And then there is this--a bright spot in RA land. Someone is listening, understanding. Perhaps someone with the power to make a difference!  Please read if you have time.  I'd appreciate it.

More on sending my daughter to China soon.

An Identity Crisis for RA :: Article

Wednesday, August 17, 2011


Well, that last post had been up far too long--but it's been too busy around here for me to write anything else! 

God is good all the time. All the time, God is good. And that about sums up my last few weeks. After the hottest July Oklahoma had ever seen--a near daily 110 degrees--it rained!! And it has continued to rain, on and off, for the past week! The drought in Texas and Oklahoma is not nearly over, but it has been so good for us to have these showers (some of the storms have been destructive though) and slightly cooler temperatures. My weary heart needed that rain just as much as the parched ground.

And we've had two-weeks of company--my favorite thing! For some reason though, I have no pictures :( But we've had travelers passing through, good friends for a night, a couple of sets of young missionary families for dinner with their sweet, sweet kids, and my daughter's boyfriend's parents! Even though my body is tired my spirit is lifted by getting to/being able to have each of these families in our home. My hostessing ability has taken a huge hit in recent years, but my kids are old enough now that we all work as a team--Becca baked two gf cherry dump cakes in recent days--and things seem to get done. Not quite the way they would have been done in the past, but done anyway.

Enough for now--just wanted everyone to know that the pity-party didn't last too long.
Counting my blessings with the raindrops.

Wednesday, August 10, 2011

Road weary. . .but still driving

The problem with chronic illnesses is that they are, well, chronic. Even when they are not so bad, they are still there. They just go on and on. Nagging or assaulting.

It has been five years this summer since I was diagnosed with rheumatoid arthritis, since those first clumps of hair fell out in my hands and my joints stiffened into burning fire-brands. I did not realize it then, but though the disease is physical, the fiercest battle is always one for my mind and my spirit.

Every day I choose to fight another day, to be positive, to be a wife and mother and  friend and sister and daughter. But daily I have to choose. Sometimes I think of cooking dinner as climbing a mountain--one step at a time. Up and up. I reach the summit by getting dinner on the table. Step and step and step.

I got my Orencia again last week--the iv medication that I take monthly. And I restarted my methotrexate (self-injected weekly), both after a 4-month break.  Also got a cortisone injection into my elbow. It bends now! No shingles--just some mild chills that seem to have faded now. Praying for the best, and that this shingles saga will at last come to an end.

The infusion nurses always match our bandages to our outfits--and give out cute band-aids. I might possibly have the best nurses around!
As much as I choose to fight, to be positive, to say "life goes on," I am weary right now, tired of the fight. And spirit tiredness can feel even worse than RA fatigue. I have to look up for the strength to renew myself, outside myself when the mountain climb becomes a trudge. 
I love the quote below, from "Searching for God Knows What"  by Donald Miller. He reminds us that we are like children of Chernobyl, living in the world after the Fall. For readers of faith, this explains our suffering. For us all, it is not a perfect world.

"I have to say that you and I are not supposed to be this way. As creatures in need of somebody outside ourselves to name us, as creatures incomplete outside the companionship of God, our souls are born distorted, I am convinced of it. . .that Moses was right. That his explanation was greater than Maslow's or Pavlov's. I believe without question that none of us are happy in the way we were supposed to be happy. . .I believe we are in the wreckage of a war, a kind of Hiroshima, a kind of Mount Saint Helens, with souls distorted like the children of Chernobyl. As terrible as it is to think about these things, as ugly as it is to face them, I have to see the world this way in order for it to make sense. I have to believe something happened, and we are walking around holding our wounds."

I think of this at times when I am too tired or too much seems wrong. Life can be beautiful. But it can also be crushingly difficult and harsh.

One day at a time.

The Lady in Pred

Saturday, August 6, 2011

Life Under the Rainbow

My girl made it home safely. I worried more than I should have. It is difficult, I have found, letting my children go. Like a mother hen I like them all tucked safely in my nest, under my wings where I can cluck over them and know they are in their beds at night.  Safe. Here. With me.

She, my oldest daughter, leaves for China in less than a month. A little farther than Atlanta. She wants to fly--and my job is to let her. Motherhood is not a stable occupation--more time on my knees and less in the trenches. Releasing her completely into God's hands (where she has really always been) is just about the hardest thing I've ever done.

Off to Pacrim in less than a month!

Mean time, my younger two are moving into high school, and I am excited for them and melancholy with the change. Maybe it is the heat this summer, or the number of changes coming at once. Or maybe I am just not a person who easily adapts. But they are happy, so I am too.

My younger daughter has spent the summer playing music and working--perfect combination for the girl who can't sit still! And now she's started high school band! She is so happy she can hardly contain herself, even though she has had to practice, outside in 110 degree heat! She is playing the synthesizer in the percussion pit since she is a piano player, but will play percussion when marching season is over. Joy is the word I would use--new friends, new activities.

Fourth of July Parade

Exhibition Night
 And her twin, number one son? He's played basketball, of course! Weeks and weeks of basketball. And he managed some hang out time with friends and cousins and catching up on some school work. He'll change schools this fall--he's a little guy and wanted to go some place smaller where he could play sports and have smaller classes. His idea and ultimate decision, not ours. Our suburb has excellent schools but very large high schools. Perhaps not a great fit for everyone. On my knees again, praying this is a good fit for him.

Fishing with Dad
Love how high his feet are off the ground!
Cousins--or Monkeys?
Almost time for back to school--hating to see this summer end! Til next time. . .