Thursday, November 24, 2011


I think about him in the summer when I lie down for a nap--the fan whirring in the stifling summer heat while the Oklahoma sun peaks through my shades. My bed is comfortable; my mattress topped with memory foam. My hips and back and elbows sink in, find what relief I can from this rheumatoid disease. Some days good. Some days not.

With the sound of the fan, the heat outside, I close my eyes and I am in his room, thirty years before. Wood floors. Windows with shades drawn for his afternoon nap. A mattress not nearly so comfortable. A whirring fan to keep him cool. The same disease. Texas, not Oklahoma, but same red dirt. My sisters and I tiptoe through the room, not realizing he is in there yet. We are playing; we head to another part of the house, hoping not to wake him. The floors creak under us, and he stirs but doesn't fuss. Doesn't call us yahoos.

His disease has nothing to do with us, we think. We are sad for him but don't understand, not really. At this point, when I was 13, he has been ill for nearly 30 years already. He has fought against it, tried every medicine and doctor and home remedy available and come home to buffered aspirin and his chair. Very little is ever said about it in my presence, though we are sometimes reminded not to jump on him or pat his shoulders too hard when we are sitting in his lap. He grimaces but never complains.

My Dad tells stories, though, when I am older, of driving him to every specialist in the region. Of all the medicines he tried. Of watching him drink a shot of whiskey first thing in the morning then hook his arms and hands around a pole to pry them open. They drew up again at night, but he owned a feed store then, having already given up on farming, and had work to do. He still went, within my memory, to soak in the springs at Hot Springs, Arkansas to get some relief. A doctor in Denver in the early '60s, probably about the time it is discovered that prednisone is not the miracle it was thought to be, tells him that most of the medicines will kill him before the disease will and that he should go home and learn to live with the pain. We all think that it was the War that has caused the disease. We blame it on the War and it is no danger to us.

I think about him now, today. Thanksgiving. He had been a cook in the Army, and he was often and while he still could, the maker of our Thanksgiving turkey. We sat down around a table filled to overflowing with salads and rolls (my Grandmother has surely burned them) and cornbread dressing, and my Granddad then asked, "I wonder what the poor people are eating today?" His way of giving thanks. He was one of the poor people, and yet he sat at that table of abundance with his family.
Granddaddy in 1942 before shipping out
Granddaddy and Grandmommy with me and my sisters.
I am the oldest. They were always proud, proud grandparents,
celebrating every accomplishment and encouraging us all along the way.
A cantankerous soul, he was often missing from large gatherings, weddings, graduations. He was a man from a different time. And we misjudged him, maybe. He walked a harder path than we realized, and we knew it was hard. How terribly devastating for a man in West Texas to be unable to support his young family. And have no hope of it ever getting better.

I am the one missing from the family gathering today, though hopefully tomorrow I will gather myself together and make it to visit my family.
My Mother-in-Law's beautiful table setting!
We were celebrating Thanksgiving and Christmas today, but I didn't make it.
I walk a bit in his shoes now. I have missed more trips and events this year than I want to try to remember. When I was first diagnosed, I declared "attitude is everything." And it is, but it is not a cure. My medicines, such as they are, still work better than buffered aspirin and whiskey (though I am sometimes tempted). My mattress is comfortable. People in general understand far more than they did then and medicine has come light years. And when I am home alone I am inundated with skype calls and sweet texts making sure I know I am missed and loved.

I wish I could have given some of that to him.

I just finished off a Thanksgiving feast of mac and cheese. I wonder what the poor folks are eating tonight?


Monday, November 21, 2011

Life Under the Rainbow. . .continues

While I'm still not feeling up to par, don't think that family life doesn't continue around here. . .it does!  And with these two busy freshman, boy does it continue! Girl #2, my busy, sweet, music-maker, has finished marching band for the year--so now the whole family can slow down just a bit!

5th in state!
But only a bit because now she's playing in wind ensemble and jv jazz band and taking piano lessons. She is a hard worker--and she is growing up to be such a great blessing to me.

Her brother, #1 son, has finished running cross-country and switched to basketball, his favorite sport of all time. Was he born with a basketball in his hands, or did he just pick one up soon after?

I have to admit, I love watching my kids, and I love that they have things they are passionate about--and I hate that I've missed so many of their activities this year.

Traveling girl has gone from Japan to New Zealand and is now in Australia. She'll be home in two weeks! I can't wait to give her a great big hug!! I'll try to get a new post done about her adventures soon.

New Zealand
Sweet Girl and I watched movies this past weekend--for some reason we ended up with a duo of Nicholas Sparks' flicks, "A Walk to Remember" and "Last Song." He's not usually my favorite author (unless I want to sit and cry), but we were looking for something to snuggle to, and those were what we ended up with.

I especially liked, right now for my daughter, "A Walk. . ." with Mandy Moore playing Jamie. She is confident in herself and her faith. A plain girl who doesn't get a makeover and doesn't become popular by the end of the movie--that is rare today. Both movies, of course, deal with illness and death (they are based on novels by Sparks). Great conversation starters for a house with teenagers and a sick Mama, dealing with issues of faith and living.

And this, to end.  Happy Thanksgiving! Hope you have many things to be thankful for!

So speak encouraging words to one another. Build up hope so you'll all be together in this, no one left out, no one left behind. I know you're already doing this; just keep on doing it. I Thessa lonians 5:11 (The Message)

Monday, November 14, 2011

Catching Up--A Bumpy Month of Thanksgiving

It's been a bumpy month or so.

The shingles came back. But I didn't catch them in time  to stop them with a higher dose of anti-viral meds--because I couldn't breathe.

I still don't know why. Two episodes of severe shortness of breath that worsened with any activity (even brushing my teeth), each lasting about four days, and coming fairly soon after I'd taken my methotrexate injection for that week. And now it seems to be gone. I haven't gotten all of the test results yet--but the immediate results were that my lungs and heart looked fine. The first thought was that I had a pulmonary embolism, but that was quickly ruled out. Between the shingles and not being able to breathe, I was left so weak I could hardly walk around my house, hardly sit at my keyboard. I overdid it once or twice and set myself back. The fatigue and weakness from the shingles virus has been terrible.

I am now, finally, beginning to recover. I rode my exercise bike 10 minutes this morning and put a load of laundry in without being completely wiped out. I feel like I'm on my way back up!

A second-opinion rheumatologist visit, trying to find some other options to deal with my shingles vs. RA drugs difficulty gave me very little new information except to confirm that, in fact, I do have RA.

Due to the shingles and breathing problems, I am off RA meds except for plaquenil and 5 or 6 mgs of prednisone and celebrex. I'm going to see how long I can last on that. For those unfamiliar with RA, that could be helpful, or it could be like throwing a tablespoon of water on a bonfire. We'll see.

My gp has been wonderful. I am so grateful for a doctor who is available, who will listen and go to bat for me. In a system where this is increasingly rare, I realize what a blessing I have.

My husband has worried and folded laundry and taken time from work to listen to doctors tell me what they don't know, again.

And this. No matter how I feel, I cook for my family. But not this month. Not much. Both my kids got a bit of gluten from a restaurant where we picked up food one evening when I didn't cook. Both were affected, but my son is so much more sensitive--he missed three days of school. Friends swooped in and filled my freezer with meals--cooked in my house, with my recipes and my pots and pans to avoid the risk of any contamination.

One gracious friend drove me to appointments and waited when my husband couldn't.

In this month of Thanksgiving, I am grateful for many things. My sweet, sweet husband. My children--who just kept going when mom didn't. My family--those phone calls can make all the difference in the world! And I am grateful for my little Bible study group of women; the ones I've prayed with and relied on and couldn't do without.

From one of them, this reassurance, when I felt like it was all getting to be too much. (Hopefully she won't kill me for quoting her!)

(I) still see my sweet, active, giving, energetic friend every time I look into your eyes past the fatigue and pain - even on a good day.

I pray so often for a treatment plan that will allow you to function and ease the exhaustion.

Hang in there - I will walk this path alongside you, you can count on that.

Happy Thanksgiving
Hope you are blessed as I am