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

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

Summer Camp Again!

Kids to camp, after one long, gargantuan day of cooking. Can a day be gargantuan? Well, it was! I still haven’t cleaned all the mess—and I finished two days ago! Six days of food for two gf kids—breakfast, lunch and dinner. And snacks. To match what everyone else is eating. While my kenelog shot was wearing off. I took extra pred, drank 6 cups of coffee and a coke and took my monthly B-12 shot a couple days early. And a couple doses of pain meds—before, during, and after.

That’s the way I got it done. But I did it!

---

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!

Our (Utterly Delicious) Summer Vacation

As promised, I'm back to blog about our gf vacation! It’s been a busy time for our family, getting kids back in school and moving my oldest into her college dorm--sad and happy time for me, but wonderful for her. She is exactly where she is supposed to be at this time in her life. Sigh.

Our vacation was long and wonderful. I really didn't want to return to the Oklahoma heat.

One of the reasons I really want to tell about the food on our trip is to let others see that we really do eat well and eat gluten free. It’s not impossible. It’s not boring. It’s not even very difficult once we adjusted to it. Eating this way is not what we would have chosen—but it’s definitely doable—and very worth it.

When we vacation, we take most of our food with us. Lots of fruit, snacks, drinks, and special treats. We stay in places with kitchens when we can so that I can cook. Fun! But we used to do that before, too. We’ve always loved to picnic. This time, we took three coolers. When we stop, the kids run around and stretch their legs, and we make some great memories—much better than a mcstop. We’re a family on a budget. We always have been, and this is the way we have always traveled.

I made carrot/zucchini bread for our breakfasts the first few days.  I also made gf snack mix for the road. My kids love this, and I threw some in the oven the night before we left. (Recipes will follow.) Another time, for a trip this long, I would have brought more homemade goodies, but I was really sick for a while before we left, and that was all I could manage.

We had one big food goof (I’ll fill you in on that one later), but the rest of the trip was a breeze. A delicious, gluten free, vacationer’s breeze. YUM!

We limited our eating out, so I’ll divide this into a couple of posts by area. This first part of the trip was to the Grand Canyon (loved it!) and Northern Arizona. We were busy with outdoorsy stuff, made a few quick stops at Arby's, but otherwise ate our own food. We then moved on to southwestern Colorado.

When we checked with the local health food store about gluten free eating options in Durango, the store folks weren’t much help. We found out more by asking at restaurants, always our best resource.

Durango

We found this cupcake at The Yellow Carrot in Durango, Colorado. This  little bakery and catering shop had some of the most delicious gluten free baked goods we’d ever eaten. No kidding! We had two different gf cupcakes, two regular cupcakes, a piece of gf focaccia bread (wow), and took a gf shepherd’s pie back to our condo for dinner. The cupcakes were huge and cream-filled. Two people could have easily shared one. And the shepherd’s pie made a great dinner for road-weary traveler’s who’d been eating picnic food for most of a week.

In Durango, fresh off the road, we also wandered into this cool barbecue joint--Serious Texas Barbecue.

Right on the menu on the wall it stated that all meat and sauce were gluten free. We felt like we’d won the lottery. We ate outdoors in the cool air, there were baskets of flowers everywhere, and the food was delicious. My son is very sensitive to gluten, but he didn’t have a problem. One of the side sauces had berries in it, which we didn’t realize, so berry-girl ended up with swollen lips. A little Benadryl and she was fine a few hours later. 

This is getting a little long, so I’m going to put this up and continue in a separate post—but believe me there’s more wonderful food—and a train ride-- to come!

Blessings,

The Lady in (ever-increasing amounts of) Pred

Here I am, again!

I've let this lag far too long, but I'm back! And determined! I've broadened my scope a bit and figured out some of the things that were frustrating me about the blog--so hopefully I've got this blogging thing down. (hopefully, surely. . .!)

I'm preparing this week to send my celiac son off to camp for the first time since he was diagnosed! We are trying to get a menu from the camp, then we'll fill in what he wants and the camp nurse will help him prepare whatever needs preparing for each meal. It's church camp, and the ministry staff has been extremely helpful--in fact, it's been easier than I could have possibly imagined when he was first diagnosed! I think this will be so much fun for him and hardly any worry for me, once we have all the food figured out and packed up.

I only really have two concerns:

1. Him not eating enough, which he still tends not to do when he doesn't want to bother with finding/asking about the food that is offered, or
2. just eating what everyone else is eating--which he will also do if he is feeling lazy. As he's taken more responsibility for his own diet, we've seen him do both several times. He's almost 13, and these are lessons he's going to have to learn for himself. He was sick in the middle of the night last week after eating a hot dog for dinner, one he'd taken in the bun and wiped off without asking what kind it was, etc., at a VBS carnival. UGH! But I can't walk around behind him forever, and he definitely paid for that hot dog with lots of pain!

His twin sister, his friends, his youth ministers, and the camp nurse will be there to remind him if he's tempted to slip, but ultimately the decision is up to him. I hate letting my kids learn the hard way, but I'm afraid that's the only way he'll ever really learn, otherwise it will become a battle of wills. His own pain--which, lucky for us is very real--should make him avoid gluten in the long term.

Now if I can just get the menu from the camp so I can finish gathering the food to send with him! A whole week without cooking for kids! No one besides my husband asking me "what's for dinner?" or "when are you going to the grocery store?" No pile of dirty dishes in the sink at least three times a day because it's summer. Only myself to please. . .and hubby.

I wonder if there is such a thing as husband camp? He's not celiac, so I wouldn't have to pack his food. . .

A House Divided, Gluten-Wise OR My Restaurant Tantrum

It's Friday night, and we ate out tonight. We are not doing that much anymore, and anytime we do, it's at some specially pre-selected place where I know there is a gluten-free menu. The times we've been cavelier about his diet, we've paid for it with days of him not feeling well.

I make sure before we make a move that there is food for him wherever we are going. I can feel us all relaxing a bit as time goes on, but still, it is a new way of life, being responsible for a child who will get ill if he eats what everyone else is eating. It has made me more than a little anxious at times over the past few weeks. Do I have enough food in the house? Food for his lunch? Breakfast? Something to send with him to a friends? To a church fellowship? What will we do about camp? About college? (I'm getting a litte ahead of myself here, aren't I?) I dream at night of grocery aisles of gluten-free food, and spend hours a day on the internet, trying to find the flour mix of my dreams.

Funny thing is, my normally fuss-budget-of-a-kid has turned remarkably layed back about his food lately. "Sure, mom. I can eat those." "It doesn't matter." "I can eat whatever." Blessing of all blessings, God somehow sent a better attitude with his better health, which is quite a change for him. No shreiking, gagging, or complaining in general, he has even apologized for not liking a few of the odder things I've served him. Huh?

So tonight we went out to one of my preselected restaurants. Fish City, with its very own gluten-free menu. When I asked the waiter for it, he had no idea what I was talking about--I explained I wanted the menu for the items free of wheat, for my son. He said the kid's menu "didn't have much wheat." I'm a little keyed up about the whole gluten-free thing, as I've said. I pointed to the kid's menu, and named the items, "hamburger, mac and cheese, fried fish, fried chicken. Those ALL have wheat. I need the menu without wheat. He cannot eat wheat and your restaurant has a menu with food choices that don't contain it."

Our waiter was pretty young, and he started to stutter. "I, I'll go see." He returned shortly with the gluten-free menu, but in the meantime, my sweet son had called me on my behavior. "Mom! You can't talk to him like that! You're acting like he's dumb." I apologized to the poor guy when he returned, who also apologized for not remembering the menu. We were off to a better start, and I indulged my sea-food lovers.

There are several good options--my blackened catfish was great. Alec loves crab legs, and even though they are expensive, I gave in and let him have them this time. He was happy as a clam, or maybe a crab, and both the glutened and the non among us were satisfied. No bread on the table to make us wish we had some, and their slaw has a vinegar dressing that I love.

Thumbs up from our family of five! And apologies to the waiter--Alec thanked him profusely when we left! The waiter worked hard to make up for his initial lack of information, and Alec worked hard to make up for my rudeness, so I think we were all happy when we left.

Sick of Being Sick

January 26,2009
I've always wanted to blog, but felt I just didn't have the time or that it would be just a bit selfish or self-indulgent, but here I go myself. This just seems the quickest way to share gluten-free tips and recipes for friends and family, so perhaps I'm not being too selfish. . .

About three months ago I began a gluten-free diet as an experiment to combat my rheumatoid arthritis. A month after that, we found out my son is gluten-sensitive. An experiment became an imperitive--and I've had to learn quickly. I still have a lot of learning to do--everyday is a new day! God had blessed us richly as my son's health has improved. I'm still hoping that mine will continue to get better. But here's a start on some healthy recipes--tested in our kitchen.

I don't know how often I'll update, but I hope to add information frequently so that this can be a diary of sorts of our family and our progress.