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

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.

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.

Another note. . .

Though I don’t blog much, I have decided to keep this blog mostly about RA and celiac and my experiences with both those things:

1. It’s what I’m living day-to-day, and often what I need to get off my chest.
2. There are a billion blogs out there, but this is mine. It will have to be about what I say it is about. Those of us with chronic illnesses learn from each other—I’m just contributing my small little piece. I take much more than I receive.
3. Parenting and feeding celiac kids and doing it all with RA—how many people are writing about that anyway? Not many, not that I’ve found! And though I might not be doing a great job, at least I am doing it.

This picture was taken in Vicksburg, MS on our recent vacation. All 3 of my kids eat gf now. (Another story for another day.)

This week, some precious mother of another gf child in Wichita, KS has been cooking for my youngest two children while they are painting houses on a youth group mission trip. She has prepared breakfast and dinner (I sent lunch for the work-site), and has made food so delicious my daughter has texted me about it all week! I usually send all their food for away trips, and her sweet sacrifice made my job so much easier.  Bless her!

New Year, New Blog

Sort of. . .

It’s been a while. I never finished those posts about our vacation. Summer and fall have come and gone. So have the holidays. I thought I had given up blogging all together.

But for the last few days I’ve been trying to think of a way I could pull this together better in the new year, and it struck me that one of my difficulties is my narrow focus.

Celiac disease and rheumatoid arthritis make up a chunk of my life, but certainly not all of it, and I just can’t seem to make myself write about them regularly. I eat them. I read about them. I pray about them. These two diseases take up an incredible about of space in my brain—but they don’t have to take up all the space in my blog!

So I am setting my blog free—I may still write about RA and our gluten free family.

Or I may not.

I am working part-time again. I love to read. I worry too much. I’ve had shingles on and off since June. You will read about these things. And my children. And maybe we’ll get through this cold winter together.

Happy New Year!

The Lady (still) In Pred