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

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.

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

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)

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

Sherry

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

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. 

("I cannot go to school today, said little Peggy Ann McKay. . .")

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.

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.

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.

Rain!

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.
Sherry

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

I did it. . .

I took the shingles vaccine.

Not a big deal for most people, but a big deal for me because it is a live virus. It is generally not given to people with suppressed immune systems. It can cause big problems--a bad case of shingles or chicken pox, even bad enough for hospitalization. And no guarantees of immunity.

In the weeks leading up to the vaccine, I vaccilated. I researched. I prayed. I talked to my p.a. and my rheumotologist, who did not make me feel any better and reminded me once again, in different ways, that I do not live in  a perfect world and sometimes there are just not good answers--at which point I wanted to cry and point out that I'd noticed that at some point in the last few years.

But I didn't. I decided that if I had to do it I was going to have as much grace and patience as I could muster. My husband, however, was a nervous wreck. He sweetly did the worrying for me, bless his heart.

It has mostly gone well. Not perfect, though, as this is not a perfect world--as my doctors love to tell me. The evening after the shot I started itching all over, my eyes, ears, scalp, arms, legs, everywhere! Some kind reaction, either to the virus or to something in the shot but there's no way of knowing. Nearly 3 weeks later, the itching is still coming and going--benedryl to the rescue.

For over a week after the shot I felt wonderful! Really, I felt better than I had in months--my RA seemed to go into hiding. Could my body have been forming antibodies to the shingles virus and leaving my joints alone? I got up from my chair and cooked and played and acted like a normal, though weak, person. It felt soooo good!

The virus hit slowly--the leaden legs and stomach upset, and then the zing of  nerves firing on my stomach. Oh yes. I did end up getting shingles. Fairly mildly, but with the same deadening exhaustion that always comes. I tried to push through and ended up missing a weekend trip with my sweet, patient husband. I slept for most of three days instead.

So we shall see. Am I immune to shingles now? I have my next Orencia infusion next week. The first I've had in 3 months. I am doing remarkebly well pain-wise to only be taking plaquenil and 5mg prednisone. I am tempted to just stay put, but fear I will regret it. I was in a terrible flare just a few months ago. I will restart my methotrexate about the same time.

Any thoughts out there? What would you do? Take the Orencia? I would really like some time without a bout of shingles or an RA flare to regain some strength. I am pudding right now and my house is a mess.  Either way, it's not a perfect world, right?

Continually--
The Lady in Pred

photo courtesy of m_bartosch / FreeDigitalPhotos.net

Life Goes On. . .

That’s been one of my mantra’s through the years. Life goes on.

And this year, even while I was sick, our family life went on. It had too! And God in His infinite goodness allowed us some wonderful memories mixed in with the ups and downs!

Here are some glimpses back. Some reasons why I get out of bed every morning, no matter how I feel.


We hosted two Japanese students over Christmas break and showed them an American Christmas! We love you, Rina and Natsumi!


We went to a few basketball games. . .and scrimmages, and practices. And let’s just say we watched some basketball. Number one son loves him some ball!


We celebrated all five! of our birthdays—complete with gf cakes and lovely cupcakes. Thank you Green Goodies by Tiffany! This party included ice skating with girlfriends.


  And this one included a Thunder game and a paintball war with cousins and friends. Hurray for being 14!
 
We spent Easter Sunday at Quartz Mountain State Park. We met my sister’s family there after church for a late picnic lunch. The boys are not in the pics because they were too busy climbing mountains! Such a beautiful place. . .

We had end-of year chorus and band concerts—and this outdoor Arts Festival concert where youngest daughter played the drum-set. I love the look on her face!

Oldest daughter turned 19! How can that be? And came home from her first year of college—with a boyfriend. How can that be? I am so much enjoying having her home for the summer—and so dreading sending her off again—she leaves in September for a semester in China/Japan/New Zealand/Australia. GF tips for the PacRim anyone?

And my babies graduated from eighth grade! He wore a suit. She bought a special dress. It was a bittersweet day—so glad middle school is over and yet so sad for me to see their childhoods slipping away.

So you see—Life goes one! So glad it does.

Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.  Proverbs 3:5