Grace

(To blog or not--it had become more complicated than it should have been, in my mind at least. And so I sat out for a while, deciding, reordering, fixing priorities and myself until I could either shut this down for good or continue without what other people thought or said (or didn't say) creating such problems for me that I couldn't write or think about the blog with any decisiveness. I am continuing.)

 When people ask me these days how I'm doing, I give one of two answers, depending on how the day is going. Either "ok" or "well."  "OK" is for those days when to say fine or great or anything else would be lying. I used to do that, but finally gave up the ruse. I am ok, no matter how I feel. At my core, I am doing ok but my body may not be following along. Some people will say, "Just ok?"  Their tone may be concerned or accusing. They may want to know more, or they can't believe that I'm not putting on the perfect face and pretending all is well.

But lately, more and more, my answer has been "well," or "really well." And some people want to know more. "A new medicine?" "What has changed?"

And the answer I give them? Grace. It's just grace. A reprieve, finally. Some time to breath in and out. There are things I do, things I've learned to do that I think help. But I do those same things on the bad days. And so I answer Grace. If they want to know more than that, then I tell them the rest.

I'm taking 4 mg of prednisone and plaquenil. I've added fish oil and turmeric. The turmeric definitely helps with pain, though it is a bit hard on my stomach so I don't take it daily. I've also added some magnesium citrate (a low dose), as I could no longer take any pain medicine without a rebound headache. Guess what? Can take a low dose of pain meds again when I need them! There's a lot being written now about magnesium and our body's need for it. Give it a google. Don't buy the cheap stuff--unless you want to spend your time in the bathroom.

I make sure I get enough rest. This is difficult for me--there is so much that needs to be done and getting extra sleep gets in the way of that! But the less I sleep the sicker I am. If I sleep I have less pain, more energy and I'm happier. I get more done when I am awake. For years I saw my kids off to school every morning, but two years ago, during my shingles bouts, I started sleeping in. I've never stopped. The kids at home are 16 and they get along just fine without me in the mornings. :) 

And, of course, I eat gluten free. I also jump into a paleo diet occasionally. Right now I've cut out dairy for a bit. Only the gf is permanent, but I try to feed my family fresh and organic. Some of them are happier about it than others!

My gp helps me stay on top of my anemia, which I find makes a huge difference in how much energy I have. I take B12 shots every month and make sure my iron stays up.

All of that doesn't mean I'm completely well, but I'm better. I feel good much of the time, even when I'm hurting. My hands won't stand much hard work and my feet won't walk even a mile without becoming really inflamed. But they'll get me through my days without complaining too much. I've gone to most of my kids' activities this year and am teaching a Wednesday night women's class at church for the first time in years!

Grace.

Yesterday morning I got up early and joined my family in downtown Oklahoma City at the OKC Memorial Marathon. I cheered while most of the fam completed the 5K and my son ran the Half Marathon.

Many wore red socks in honor of those in Boston. My oldest daughter ran in honor of a close friend who died last year.  We were all there together. Even Mom. Oklahoma City seems such a special place at Marathon time, remembering a horrible event but making something so good out of it. I was happy to be to be part of it, even in such a little way, proud to watch those of mine cross the finish line even if I couldn't.

Grace. And more than enough of it.

Sherry

Thanksgiving. . .and Giving Thanks

Yesterday, as I sat in worship, my 15-year old son took my hand for a moment during a prayer. He is protective, watches out for me. And that small, gigantic gesture swelled his mama's heart so big with love and gratitude that even today I can hardly stop thinking about it. 

As I type this, I glance down at the note his sister recently left on my computer: "I love you beautiful Mommy."

These precious gifts come in the middle of the swirl of teen drama and meltdowns and busyness. 

The leaves turn lovely and fall from the trees, and I buy groceries and cook and watch basketball games and do mounds of laundry and listen to a girl chatter on and play her drums and piano. I walk and limp slightly but walk and walk and bake and talk and read and sleep (and if I could only sleep a little more. . .) and take the college girl to tea and gather with friends for Bible study and prayer and thanks giving. And gratitude lessons.

Last year at this time, I had no idea what this year would be like (do we really ever?). I thought I might not be able to leave my house or take care of my family. ( Granddaddy  Walking a Thin Line)

But this year, quite unexpectedly, I can breathe, and I am not housebound and my RA is at least behaving moderately most of the time. 

And I am thankful. Grateful. None of us ever knows what tomorrow will bring, but today, Today is good.

Thanks Giving. Indeed.

Psalm 34:1-4
I will bless the Lord at all times; His praise shall continually be in my mouth.
My soul shall make her boast in the Lord: the humble shall hear, and be glad.
O magnify the Lord with me, and let us exalt His name together.
I sought the Lord, and He heard me, and delivered me from all my fears.

Ahhhhh. . .Summer!

Dropping into my blog for a quick update. . .I've got plans for this place, but not the time right now to implement them. Some little changes coming up when time allows. Soon.

I have been counting blessings this spring and summer.

OKC Memorial Marathon

Husband and kids did the 5K--so proud of them all!

We gave honor to whom honor is due with an anniversary party for my parents. Thank you Mother and Daddy, for everything!

My two youngest painted houses at work camp and then went to church camp. My oldest worked and had an internship, writing BLOGS for a marketing department! I packed gluten-free food for everyone as they came and went and came and went.

My boys went wilderness trekking--my son's dream since I read him My Side of the Mountain in second grade. They summitted a 14,000 foot peak in Colorado, hiking 25 miles in and out! They were gone for just over a week.

The whole group!

And finally, we took a short family vacation to New Mexico. My college girl could barely get away, but we squeezed it in and were glad we did! These times together are getting more and more rare but I so treasure them.

Flowers outside the little house where we stayed! Gorgeous!

Medical update: For those of my rheumatoid friends--I've stopped taking Orencia and methotrexate. No more. So--no more shingles and no more breathing problems. There seems to be no permanent damage to my lungs, though I'm still occasionally short of breath. Though I miss the pain relief, it is lovely to be without the mtx side effects each week--the one day of nausea, fatigue, headache, etc. I would begin to feel sick as soon as I  drew the stuff into the syringe! 

AND. . .I'm actually feeling pretty well! Not perfect. Not pain free. But without the shingles and their viral counterpart, and by sticking carefully to my gluten-free, lots of veggies and fruits diet and getting plenty of rest, I feel pretty good! I'm decreasing my prednisone per the directions of the infectious disease specialist and trying to let my immune system rebound. I'm down to 5.5 mg and have lost a little weight.

And I am thankful, thankful, thankful for the prayers and grace that have brought me to this place this summer. I am aware that without them I would not be feeling so much better. This is the first summer in three years that I have really felt well enough to enjoy it!

Peace. . .and back to March

On my way to a lab appointment to today, I tried to remember the Serenity Prayer. It's been a while since I recited the whole thing, and I stumbled toward the end. I had to look it up when I got home.

God grant me the serenity 

to accept the things I cannot change; 

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time; 

Enjoying one moment at a time; 

Accepting hardships as the pathway to peace; 

Taking, as He did, this sinful world

as it is, not as I would have it; 

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life 

and supremely happy with Him

Forever in the next.

Amen.

--Reinhold Niebuhr

There is wisdom for me right now in those words. Learning acceptance, wisdom, enjoying one moment at a time. Courage.

*********************************

And a phone call from a friend, especially kind words of encouragement, acknowledgment reminded me that some people have a special talent for that. And of this quote which I read yesterday on Momastery.

“The plain fact is that the world does not need more successful people, but it does desperately need more peacemakers, healers, restorers, storytellers, and lovers of every kind. It needs people who live well in their places. It needs people of moral courage willing to join the fight to make the world habitable and humane. And these qualities have little to do with success as our culture has defined it.” – David Orr

". . .It needs people who live well in their places."

**********************************

In March,  we finally took our long-awaited family camping trip--the one we had to miss in the fall because I was too sick. And really, waiting was worth it. I am feeling much better right now; I was able to get reservations into a park we'd wanted to visit for a long time.  We had a wonderful log cabin with a stone fire place in beautiful southeastern Oklahoma.

It was precious family time. Our college girl came too--time with all five of us is getting rarer and rarer. And it was one of the best times we've ever had. The younger kids fished like crazy--and caught nothing. But they had so much fun doing it. We played games, rented kayaks, built fires, and spent and hour or two singing one evening. You read that right--singing :)

At first the kids were sharing their favorite songs on i-tunes, but it turned into singing and in the end, they all serenaded ME! We are not a family of beautiful voices, but it was the best singing I've ever heard, and one of my favorite nights with them all, ever!

Peace be with you today.
Sherry

Friends

I am still trying to process the month of March. I put up a post and took it down. An introvert, I have to think things through before I can really explain and write or speak about them.


The March post will go back up when its ready, with it's sadness, sweetness and glory. But not yet.


My youngest daughter and I were talking about friendships this morning, how different personalities need friends in different ways, but we all do. Her extrovert brother surrounds himself with a big group. She is happy with just a few close girlfriends. I hold tightly to my friends, even from long ago, value them, try to stay in contact. I tell my children--people are always more important than things, than status, than popularity. People are to be cherished.


Each stage of life has brought different relationships, and some stages have brought loneliness. Right now, as I am mostly at home and most of my contemporaries are busy with work and volunteer obligations--as I used to be--I often find myself at lose ends, wishing for more time with friends. 


And yet even now I have a small group of friends who intentionally make time for each other every week for Bible study, who years ago dropped our masks and sat down together to pray and share.  What would I do without them? 


Life is hard, difficult, joyful, even sometimes brutal. And it is not meant to be lived alone. 


What role do friends play in your life? If you have a chronic illness, how well or how much can you communicate about it with your friends? 

Happenings at Home

I didn't want to leave that last post up too long! Thank you, everyone, for your sweet comments. On a more positive note--here are some highlights from our family life of late.  Counting my blessings is easy.


My husband had another birthday--and we surprised him with an at-home fiesta and some of his favorite foods. The kids helped cook and decorate and it was tons more laid back and fun than going out! (I first caught this guy with my homemade enchiladas, so I make them for him every year on his birthday.)

His mustache wasn't sticking any longer!

About that same time we hosted another Japanese student who was just here for about a week. It was her first trip to the United States, and we had such a great time getting to know her! We love you, Miyu!

At an OC basketball game with my girls.

For my son, basketball season ended--and baseball season began. He hasn't played baseball since sixth grade but decided to try it again this year. Their first game was just a few days ago. He's still a little rusty, but he hit an in-the-park-home-run! Of course I'm one proud Mom! 

A friend got this great picture! Look at the ball just leaving the bat!

No pic, but his twin sister, Miss Music, competed in District Solo competition on marimba this weekend. We won't know how she did until tomorrow. . .  But I know she did great!  


I'm really not one of those moms who believes every kid has to have a "thing," but I am glad my two youngest have found activities that they love. Every child is different. Their older sister tried lots of different things without narrowing it down--I think she loved people and socializing more than the activities themselves.


This weekend was Spring Sing at the University she attends (and where my husband works). I think this is one of the most fun and busiest weekends of the year for her and the other students. It's a variety show/competition between the social clubs on campus. It always leaves me smiling-singing-laughing!

Her club's show was about astronauts. She danced on the side
because her foot is still sore from breaking it in China!
Mom's prejudiced but I think she was the cutest Space Shuttle ever!

With the BF, whose club's show was about Mario Brothers.
They placed fourth overall!

The girls--tired and happy!

So you see, as usual, life is going on around here! Wishing you all many blessings--


Sherry


Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

Failures, Flubs and other UnLovely Things

This is our family Christmas card from 2006--the year I first came down with RA.  My husband found them in a box in the garage a few months ago. They were stamped and addressed but somehow, inexplicably unmailed.  I have no idea.


There was also a stack of thank-you notes, written by the kids to grandparents and great-grandmothers and aunts and special friends. All ready to go. Not mailed. Two of those great-grandmothers are gone now, and I am filled with regret. Again, I have no idea.


But these are not the only failures over the past few years. I've missed birthdays and baby showers and wedding showers. The list goes on and on.


I'm lost as to how to even write this. I lost friends. I've apologized to a few, but I'm certain that those apologies have fallen short--I am not the same person I was six years ago, and I cannot go back. Making amends is a long process. To those I've let down without even knowing it, I apologize. I wanted to do better.

Walking a Thin Line

When your doctors start apologizing to you, you know you're in trouble. It's not a good sign if you feel the urge to reassure your doctor as he or she leaves the exam room. The last couple of times I've seen my rheumatologist and his p.a., they've both apologized.  My gp has apologized. Until I had RA, I never realized how many patients there were who doctors don't know how help.

 And now I get to be one of them.

After repeated rounds of shingles over the past 20 months and a severe lung reaction to methotrexate in the fall (methotrexate lung or hypersensitivity pneumonitis), I'm walking a very thin line.

Every time I suppress my immune system, I come down with shingles--so no more Orencia or kenelog shots or higher doses of oral pred. Over Christmas, with an oral pred dose of around 15mg and overdoing it a bit, I managed to have a small outbreak.  My lungs are also still sensitive, so I still have days when I am short of breath, though that does seem to be improving. With both of these problems, there is no standard treatment. No one knows what to do next. And so that thin line.

Right now I am taking only hydroxychlorquinine, about 7mg prednisone, and celebrex for my RA. In other words, not much, but it's holding fairly well for now.

So it's the quiet life for me. Plently of rest. As little stress as I can manage (I have teenagers in the house, so that doesn't always work!) A really good diet (oooohhhhh--I want a some sugar so badly!) with as many fruits and veggies and good foods as I can stand in a day.

I'm trying to both avoid shingles and an RA flare.  My RA is somewhat active now, but I'm getting by with topical pain relievers (lidoderm patches, ketaprofen cream), prayer and some stronger pain relief when I need it. But even this is a double-edged sword, as stronger pain relievers have started giving me rebound headaches, and I have to limit them in order for them to be useful.

My family is letting me sleep in every morning rather than navigating the morning crazies--and I am grateful for those two awesome teenagers who are old enough and independent enough to get themselves off to school and do their own laundry (and who sweetly kiss me goodbye before they leave).

I am trying to embrace the quiet rather than let it wear me down. When my children were small, my middle sister said I had the loudest house she's ever heard (and she has four kids)! I love the hustle and bustle of my kids and their friends coming and going.

But right now I'm praying for healing in my immune system.  I'm accepting God's sweet presence here with me.  It's almost spring outside. I don't know what this one will bring--it has been a difficult year, and if my body does not cooperate, I could hear more apologies from my doctors. I see an infectious disease specialist next week, so I'll find out if there are new ideas there.

Just a couple of weeks ago this was in one of my devotional books--Jesus Calling, Enjoying Peace in His Presence, by Sarah Young. From February 15:

Thank Me for the conditions that are requiring you to be still. Do not spoil these quiet hours by wishing them away, waiting impatiently to be active again.  Some of the greatest works in My kingdom have been done from sick beds and prison cells. Instead of resenting the limitations of a weakend body, search for My way in the midst of these very circumstances. Limitations can be liberating when your strongest desire is living close to Me.

And so I am waiting quietly, mostly peacefully. Walking, painfully, that narrow line.  I know some of you are walking it with me. I am praying for you.

Sherry

The End of My Girl's Trip--New Zealand and Australia

I promised I'd be back with the rest of my oldest daughter's semester abroad, and though it's taken me a while, here it is! January must be the most difficult month of the year to keep up a blog--I notice many of my blogging friends taking breaks also. I'd rather cozy up to the fire with a book, fold laundry (really?), just about anything else than sit down with my computer and write! But I want to wind up telling you all about her trip to the Pacific Rim, so here goes:

After her wonderful time in Japan, the group moved on to New Zealand. She says now that though Japan was one of her favorite parts because of the home stay, she really loved New Zealand and Australia.  She was surrounded by so much beauty there, and it was so good to hear English spoken again.

In NZ they began their time with a few days in a Marae, sleeping on the floor and experiencing life as the original peoples of New Zealand would have.

From there, they moved on to a family's home on Waiheke Island, New Zealand.  Eating gluten- and dairy free in NZ was relatively easy. The mom where they stayed first kept her spoiled with gluten-free pancakes each morning--

And she had no problem finding cafes and restaurants with gf offerings!

GF Pasta on Waiheke Island

GF Cappacino Muffin

But she was most excited about the pizza! A few years ago we read that Dominoes had gluten-free pizza in New Zealand and Australia, and she couldn't wait to try it. Sure enough, as soon as she could, she ordered a Dominoes gf, cheese-free pizza. And ate the whole thing. Not just once, but over and over again. Here's the first one: (And I know, only someone who is pizza-deprived would really understand how excited she was at this point in the trip!)

Her first pizza in months!

Notice the Gluten-Free sticker on the mid-right of the box

In Australia, it rained much of the time she was there, which delayed and changed many of the group's plans. But they continued on in spite of the rain.

In the harbor near the Sydney Opera House

On the beach, but not swimming because of the rain!

Seeing a kangaroo at the zoo!

And eating a kangaroo burger for Thanksgiving Dinner.

She easily found gluten-free/dairy free food,

A cafe near her youth hostel in Sydney.

while she explored the beautiful countryside.

Blue Mountains

I think it may have been easier for her there than it is here at home. My sweet girl has always been a teensy thing, and in the earlier posts I told you how she lost weight in China but began to gain in Japan. By the time she came home, she had gained over 20 (needed) pounds! Never in my wildest dreams did I hope that she would gain weight on this trip, but she did--thanks to the great care of the wonderful people in other countries. And, I think, because it is, in fact, probably easier to eat gluten free in New Zealand and Australia where people are more health conscious, and there are more options.

She finished up her trip with a couple of days in Hawaii before coming home just in time to help get ready for Christmas. Finally she got some time on the beach in the sun!

On the beach on Hawaii

I'll end, again, with my girl's own words from her statement of learning about the semester. I am so proud of her! She is so glad she went. She felt really well the whole time she was gone. Can travel to difficult places be done on a restricted diet? It sure can! She learned a lot and so did we. And she's already talking about going back.

 Looking back over the semester, I do not even begin to know where to start. Do I start in Beijing, the logical place, where it all began? In Japan, where I fell in love with the people? In New Zealand, where I was surrounded by some of God’s most glorious creation? Or in Australia, where I was surrounded by the familiar and unfamiliar simultaneously?

In each place, I struggled to find God there, and in each place, there He was, right there with me.

Also in this series China, At Last!  My Traveler. . .An Update  More from Travelin' Girl! Japan 

Rise--Shawn McDonald

I've been listening to this song a lot lately and wanted to share it here. Last year was rough. I really can't put it any other way. When Warmsocks wrote about her discouraging 2011 in her Happy New Year post, I could  identify.

Only twelve days into the new year--so far so good. Some pain, but also some energy. People keep asking me what is different. I don't have shingles and I can breath and I'm taking prednisone. They would feel better, too! I'm not fooling myself--I don't know how long this will last. But for now, I'm lovin' the heck out of it! (And I'm more apt than usual to say what's on my mind.)

Anyway, this song seems to fit after all my body and mind went through last year. Maybe it will encourage you.  What a great way to start a new year!

Sherry

p.s. I realize the video is geared toward a younger audience. Listen to the words if the visuals distract you.

Christmas Review

Christmas has come and gone. I took a nice little break from blogging and thinking about anything RA or health related during the holidays and concentrated on my family.

Natsumi, our sweet Japanese friend, spent a few days with us before she went home to celebrate her special birthday! We love having her with us for the holidays--this was her second year to help us decorate our tree.  I love looking at my traditions and beliefs through the eyes of another culture.

We mostly relaxed at home and enjoyed each other. With older kids, their activities and work kept things moving, but we managed to play games and see movies and drink home-made hot chocolate and snuggle by the fireplace.  Just having everyone together meant more this year after my daughter's semester abroad.

We visited my parents for a few days, where it seemed everyone was sick! My mother, a wonderful cook who has embraced gluten-free cooking for her many gluten-intolerant children and grandchildren, cooked up a Christmas feast anyway--along with some help from my sister. Here are some of their creations (Yes, you should be envious. My mom cooks mostly without recipes, by touch and taste. I did not inherit this talent.)  There was also gf dressing, gravy, about six other pies and fruitcake, candy, etc.  A completely gluten-free weekend. Delicious!

GF Coconut Cream Pie

GF Stromboli
Gluten-Free Pantry's French Bread Mix
Filled with Pizza Toppings and cheese

Cherrybrook Kitchen Cookies

When Christmas break began, I was still very weak and not breathing well. Most of my lung tests were normal, and by Christmas day I was starting to breath more normally, too. The official diagnosis, as is stands now, is methotrexate lung, which is a form of interstitial hypersensitivity pneumonitis. A little like coal miner's lung--but it usually gets better when the offending substance is withdrawn.  I'll do another post on what I've learned about it later. I still have some days when breathing is more difficult, but most days are good. Though I've had asthma all my life, I have never experienced anything like this before. I am so grateful to be able to breath!

I am looking forward to and hoping for a quieter 2012. Better breathing. No more shingles. RA under control.

Happy New Year to you!

Now on Facebook!

Just for ease of communication with my fellow RAers--I created a facebook page. Join me there if you'd like. It lets me keep a little anonymity on the www and communicate more freely with you all.

A final post about my darlin' girl's travels to come soon, I promise! She is home now, to my relief and joy.

I am still having difficulty breathing, and my rheumatologist thinks methotrexate is to blame. Bronchoscopy with lavage and biopsies last week to check the status of my lungs. I am hoping to get at least some of those test results tomorrow--and I am, quite naturally, nervous.

A higher dose of prednisone and relief, finally, from the shingles post-viral fatigue, and I am feeling unusually well after over two months of illness!  If you can take the shingles vaccine, please do. I am trying to put together a post on this topic soon.

Joy and peace to you.

And those are not the idle words of this harried season, but rather a prayer from someone who knows what it means to be both with them and without them. And definitely prefers the with.

The Lady in (more, again) Pred
Facebook: The Lady in Pred

More from Travelin' Girl! Japan

Less than a week until she's home, today I'll start catching up on what she's done since China. It will take a couple of posts.
Japan
Her group traveled for about a week then settled into a month-long home stay and took classes at Ibaraki Christian University. (Japanese, Japanese Lit, Intercultural Communication, and Bible). Her Okaasan and Otoosan (Japanese Mama and Papa) were absolutely wonderful, and she had two Vietnamese "sisters" as well. She knew several students at the university from their stay in Oklahoma last year (we had even had some to dinner at our house.) She loved Japan, the people, the countryside--and there were only minor earthquakes while she was there. She took thousands of photos, some of them even while she was shopping--one of her favorites in any country! No post of mine will do her time there justice, but  I'll let these few pictures tell some of her stories.

Okaasan and Otoosan with another of their foreign students.
I can not thank them enough for their sweet care of my daughter.
They were wonderful!

Worship at the Omika church.
She worshiped with people from so many different countries.
What amazing experiences!

Ikebana--Japanese flower arranging class. 

Fukishema Aquarium on an outing with Ayaka and Misato,
friends from OC last year.

The group visited Tokyo Disney

On a beach in Japan--the sand is black

Corn soup in a bottle--she bought this on a train.
GF, of course. She gained weight in Japan--a good thing
since she'd lost nearly 10 pounds in China!

Fresh shrimp, right from the sea near the
home where she was staying.

Octopus, fresh and uncooked. Also from the sea
nearby. Okasaan served it for dinner one evening.
She said the little suction cups still sucked a bit :)

Sweet potatoes made the "American way"
for her family. One evening each student made a dish
from home and this was Hannah's contribution.

The students participated in an arts festival on the University campus.
They came up with a show with singing and dancing--looks pretty good, huh?

Okasaan and Otoosan gave her a kimono as a
going away present.  

And now a few words from my girl herself:

The gift-givingness of the Japanese people is overwhelming to me. I have received more gifts since coming here to Ibaraki than I could have ever expected! And actually, I am meaning literal gifts, as well as intangible ones. Friendship, love and care abound, and the gift of time. But also warmer clothes for the impending autumn, cute accessories to wear, delicious meals, even money! I have received again and again. Today my host mom mentioned (at least I think- the language barrier sometimes does me wrong and I misunderstand) that they will be giving me a yakata, a kimono. That is a very nice and often expensive gift. I don't deserve these things!
The Japanese habit of gift giving reminds me of my duty to share God's gifts, the best gifts of all. Service, friendship, love, and most of all the message of His son. If the Japanese are called by Buddha to give, how much more am I called to give by the living God?!

More posts in this series: China, at Last!   My Traveler. . .an Update   The End of My Girl's Trip--New Zealand and Austrailia 

Granddaddy

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?

Sherry