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.

Between a Rock and a Hard Place

The kenelog shot finally worked—after about 10 days. I am up and moving again. Still some pain and stiffness, but the intensity is greatly relieved. My jaw is especially better—it was the first thing I noticed! Hurray!   I even managed to plant some tomatoes and peppers this past weekend—I love my garden.



Ah, but there is a price for this relief.  A few months before I had my first big RA flare, I was working hard on a project at work. I came down with the flu, and then a light case of shingles. The rash was fairly light, but the virus itself laid me out for nearly a month. I was so fatigued that when my RA began, I at first thought it might be shingles again.

Fast forward—four years into my RA battle.  The shingles/chicken pox virus is one of those that always lays dormant in your body. So last spring after a particularly busy time, it reactivated again. The rash was light, but again, the virus itself made me feel horrible. Chills, fever and a terrible weakness. At first I didn’t realize I had shingles, but once diagnosed and started on antivirals it quickly began to get better. That time.

After that, each time I received my Orencia infusion, the shingles flared. Sometimes the rash would erupt and be full-blown, other times it would only cause tingling on my skin where the rash usually was. But always it made me ill. My gp calls it viremia, the feeling you get when you are coming down with a virus—chills, achiness, tiredness. Sometimes I would be so weak I could barely sit up—at one point last summer I spent nearly 3 weeks in bed—with shingles.

So before every Orencia infusion I began taking anti-viral drugs and continued them until the shingles went away. I even took a break from Orencia, and that seemed to finally let my immune system rest  and put the shingles back into hiding in November.  Until I got this kenelog shot. About a week after the shot, I noticed a little itching on my stomach, in the usual place. Then the chills began. And the awful weakness and tiredness that even prednisone can’t help.

More antivirals. And so even though my RA is better, I am still not feeling well. Less pain, but I still only want to sleep. The valacyclovir has kept the rash in check, and it’s only a little uncomfortable. I skipped my methotrexate shot for the week, trying to let my immune system get back on top of things.

I was already debating a change in biologics, and since I’ve reactivated the shingles once again, this may be the last straw. Would another biologic be less likely to keep it going? There’s very little research in this area, and I’ve been pretty much left on my own to find it. The only published research is on a few of the TNFs, which have been shown to cause an increase in shingles.

There do seem to be a few people, even without compromised immune systems, who have shingles over and over again. Doctors don’t seem to know what to do with them. I seem to be one of them.

In catching up on blogs this week, I came across a recent post at Gitzen Girl. I love her attitude. Love her blog, and she expressed what I was feeling exactly. I sat in tears.  

It’s from April 13 and titled “Really.”  Take a look—I needed to look at my situation from a different perspective. I am grateful, grateful that she helped me. 
http://gitzengirl.blogspot.com/2011/04/really.html

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.

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

University of Maryland gets record donation for celiac research - baltimoresun.com

Sharing this link--The University of Baltimore is a major center for research on celiac disease.

University of Maryland gets record donation for celiac research - baltimoresun.com

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

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