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.

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? 

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

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.

Gitz: Saying Goodbye

Back in April I was a stuck between a rock and a hard place, and I wrote about it here.  In that post, I mentioned a blogger that I read frequently--you'll find her mentioned in my blog list-- Gitz. She is one of several Christian and chronic illness bloggers that I have been especially uplifted by over the past few years.

A few friends commented on how much they liked her blog and that post specifically. Her writing is beautiful, her godly attitude beyond inspiring. I sometimes read her posts in the morning and then sit for a while, challenged and a bit undone.

Her name is Sara--she has ankylosing spondylitis. And her complications from that disease have been severe.  So many times she has made me grateful when I felt bitter, made me think when I didn't want to. She never candy-coated her pain but it never got in the way of her joy. Though my illness is nothing compared to hers, she became a kind of model to me of what to do WHEN YOU ARE A CHRISTIAN AND SICK. How to be honest. How to have dignity. How to care for others and not be self- involved. How to be more like Jesus. Lofty goals--things to try for that I am still learning.

And Sara is going home. A friend is updating her blog now, while hospice cares for her. She placed this quote from Sara on her blog earlier:

 "... I have lived in this condo since I was 29 years old. I haven't left it, ventured out, even open a window in years. It's where I am, where I will always be, and yet when someone says the word 'home' I don't think here.

I don't think anywhere, really. I think who.

Because my home rests in the hearts of people...

 

My home is not here. It's not in a country or state or town or walls. It's in the hearts of the people I love.

And their home is in mine."
Homeward Bound

If you want to be grateful for what you have today, be uplifted, feel closer to God--if you're not afraid to shed a few tears--spend some time on Sara's blog. She is going home. She is not afraid. She chose joy all along the way, no matter what, and helped so many others learn to do the same.

God is good, all the time. All the time, God is good. Thank you for the joy, Sara.

For another beautiful tribute to Sara at another of my favorite blogs, see Pensieve: Choosing Joy, Dying Well and Crying with Hope.

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

Vacation 2011—Family, Fun and Inner Peace

Summer again! And a huge sigh of relief from me. Sometimes the school year feels like a race to the finish line, and I am dropping things along the way.

With three teenagers, it always seems there’s a lot going on, a lot to juggle. And I don’t always have to energy I need for my juggling act. I am still struggling with shingles and feeling a huge weight of anxiety about taking a live virus vaccine with my immune system low, but this seems to be the best option to have some hope of conquering this beast.

So we set off for Gulf Shores as soon as school was out—bathing suits and sunscreen and hormones all packed into our little Honda! I hoped the roar of the ocean would drown out the roaring in my heart and let us all relax a little.

The beach and sun and waves did their work. We returned to Oklahoma sunburned and relaxed, if a bit road-weary.

But God has been doing His work in me as well, and I feel compelled to share it. Throughout this year, my little Bible study group has come back to Philippians 4:4-7 and other verses like it, rejoicing and finding peace in spite of suffering. We think God really means it--He means for us to rejoice, not matter what.

At times I feel overwhelmed, but eventually I remember this: I cannot change my circumstances, but I can confront and endure with peace and rejoicing. With grace and not bitterness.

Be full of joy in the Lord always. I will say it again, be full of joy. Let everyone see that you are gentle and kind. The Lord is near. Do not worry about anything, but pray and ask God for everything you need, always giving thanks. And God’s peace, which is so great we cannot understand it, will keep your hearts and minds in Christ Jesus. (New Century Version)

Giving thanks for my wonderful family and friends.
Joy and peace to you.

The Lady in Pred

Another Way to see things. . .

Love this song--"Blessings" by Laura Story. Again, reminding myself that I am useful to God right here, where I am.

Frustrated

Yes, frustrated.

Which means I probably should not be blogging right now. I’ve been in a flare, on a higher than usual dose of prednisone and then had a kenelog shot on Wednesday. To say that I am not myself would be an understatement.

I’ve been slowing diving into a rheumatoid arthritis flare for about 6 weeks now—the first I’ve had in about a year, the worst I’ve had in about 3 years, though I haven’t felt really well for most of this past year (shingles for 5 months anyone?). First it was my jaw, and really almost unbearable pain. And several really strange/awful dentist-tmj appointments. My chiropractor has helped more than anyone. My rheumy’s office lost my call and didn’t return it. Now all agree it is probably RA.

Then about 25 changes in our Oklahoma weather—cold front, warm front. Cold front, warm front. I felt every one of them. Most of them kept me awake at night, swelled my fingers and toes, made me cry out at odd times. Several days all my fingers looked like they’d been bee stung--they were so fat and swollen. Why are the southern fronts the worst? My other RA friends and my dear Mother-in-law with fibro say the same thing. I feel like my joints are being played like a xylophone—ping, ping-ping, BONG—as the pressure changes inside a finger, an ankle, a toe. Musical joints.

Then the big one—complete exhaustion. Pain from jaw to feet and so stiff. My husband took one look at me and told me how much it looked like I was hurting. I pushed on with our weekend plans (5 teenage boys and other houseguests, church, a special event for my husband’s work), which only made things worse.  I took more oral prednisone, which allowed me to keep going but didn’t end the flare.

So I gave in and went for a kenelog shot. I am a bit better—still very tired, but mostly what the shot has done is make me cry at the drop of a hat. Fun times for all at my house.

I have been so tired this year. I will probably miss an event that I really want to attend tomorrow—one of those once-in-a-lifetime things. I yelled at my kids yesterday. My house is a mess.

Do I need to change medicines? My rheumy wants me to choose my next biologic (I’ve used Enbrel, Remicade and have been on Orencia for nearly 3 years). We’ve discussed it, but I’ve refused to make a change yet. There was new damage to my shoulders on my last x-rays, but she will not voice a definite opinion. So it is up to me. I’m working on a spreadsheet with info about my choices, but really, right now, I just want to be told what to do. I don’t have the experience or knowledge to know what to choose. And her refusal to choose tells me that she is not sure a change will help either.

I want more of my life back—my body does not seem to respond well to overdoing, but what it thinks is overdoing and what I think are overdoing do not meet. I want to work again (I am doing a bit of part-time right now but not keeping up well with that). I want to volunteer and teach Bible classes and be the fun mom again. Even just a 50% improvement would make such a huge difference.

I’ve been reading from “Jesus Calling, Devotions for Everyday” to my daughter at night before she goes to sleep. It has been good for both of us. The theme, lately, seems to be trust. Here is March 30:

“I am taking care of you. Trust me at all times. Trust me in all circumstances. Trust me with all your heart. When you are weary and everything seems to be going wrong, you can still utter these four words: ‘I trust You, Jesus.’ By doing so, you release matters into My control, and you fall back into the security of My everlasting arms.”

I am trusting in the long-term plan. The kenelog shot is not helping that, though, today. Tomorrow has to be a better day.

Invisible Chronic Illness Week—My Take

This is Invisible Chronic Illness Awareness Week. Bloggers are encouraged to participate to increase awareness of invisible illnesses. Hubby has done his part here: Bing Jeffry Bing. Last year I skipped it—I just couldn’t bring myself to write about the subject. I’m still not sure about it this year.

What do I say about invisible illness in our family? How do I explain in one post how quickly life can be transformed just when you’re least expecting it, how abruptly expectations must shift for everyone in the family?

In the  month or two before the rheumatoid arthritis hit, I refinished our kitchen cabinets, organized a luau for my daughter’s 14th birthday party, and finished up a successful work project. Life was really good. (I was even thin!)
But that was the old me. Soon after, on vacation, I noticed that everything hurt and my joints were stiff. My hair fell out in clumps. I had a weird rash under my arms.  My knees and one elbow were so hot and red that I could feel them through my clothes. I could not bend one knee and ran fever. I slept all day and barely knew what my kids were doing. My doctor took my family history, looked me over and sent me to a rheumatologist. Oddly, even though I’d grown up knowing that my paternal grandfather had RA, it never occurred to me that I had RA. I thought I had some kind of virus. The diagnosis, unusually swift (some patients wait years), came as almost a complete shock.

It’s been a few years now. A series of medications. Some that worked fairly well; some that didn’t. I’ve been through some really bad flares, some times when I had to use a cane. We took a wheelchair on vacation with us once. We moved because the stairs on our house were really steep and really hard on me. My kids adjusted and grew. My husband adjusted and grew. I’m still adjusting. I quit my job. My circle of friends got smaller but tighter. I learned some things about myself. My son was diagnosed with celiac, and then my daughter was diagnosed with an autoimmune arthritis. It broke my heart but then life went on.

And the thing that has stood by me most is that even before all of this, the needles and pills and more doctors visits than I can count (or pay for) and lost dreams and pain and fatigue, that thing that is true, is that I am blessed. Not just because I have a great husband and beautiful children and sweet friends and a wonderful doctor. All those things are true. But even if they weren’t, and I sometimes lose sight of it all, is that I already knew the Great Physician and He already has the cure. And He already knows how I feel and cares. Everyday. No blog needed.

Thanks for reading, if you’re here. Hope it all came out ok.

Back soon with the rest of vacation.

Hope you’re well and loved today—blessings,

The Lady in Pred

Invisible Chronic Illness Week

Better than a Hallelujah

This says it better than I ever could. Hope any of you who read, enjoy.

Sherry