Rheumatoid Arthritis, Rheumatoid Disease

I confess: Glenn Frey, a cough, RA, and me

RD-FACTS-1
It’s Rheumatoid Awareness Day.

Aside from being able to sing along with many of the Eagles’ songs, I didn’t know much about Glenn Frey until I read that he died of complications from the chronic illness we have in common, Rheumatoid Arthritis. There is a lot of bad information out there about RA; it is often confused with Osteoarthritis by people who don’t know that an auto-immune disease is more complicated than damage to the joints. Many patient activists/advocates have asked that RA instead be called Rheumatoid Disease, to end the arthritis comparisons. In comments on the news reports of his death, some people blamed the medications used to treat the disease. Others critiqued Frey for not being a more vocal advocate for Rheumatoid Disease patients, despite the picture below. People lash out when they can’t abide what’s happened, looking for something or someone to take responsibility.

Glenn Frey at an Arthritis Foundation Walk in 2013.
Glenn Frey at an Arthritis Foundation Walk in 2013.

Some people do have bad reactions to medication for RA (including methotrexate, Enbrel, Orencia, Humira, and Remicade). One side effect they all have in common: they leave patients immune-suppressed and therefore raise our susceptibility to infection and our ability to combat other illnesses. Thus, a virus that might not bother an ordinary person will become a cold that goes to the chest, and then pneumonia, which for people like Glenn Frey and me is life-threatening.

In January, I had a cough. The only way to get over it and have a good chance that it wouldn’t get worse and create greater risk was to take much better care of myself than I would have done prior to the RA diagnosis I received in 2008. That means lots of fluids and an inhaler and fluticasone spray. It means staying home and resting, perhaps my least favorite thing, despite my kind spouse’s reminder that “Beds are where sick bodies get better.”

It also means going off the RA meds until the infection is gone. Symptoms return fairly quickly for me. My joints stiffen, in particular my hands, which for a writer and knitter like me, or for a musician like Frey, can be disabling. When my hands are bad, basic tasks become difficult. I can’t chop things or stir them. When it’s worst, I have trouble cutting my own food or dressing myself. And that’s just my hands. Overuse of inflamed joints can cause permanent damage.

“I don’t have time for complaining,” a churchwoman uninterested in my illness once said when I tried to explain. When you have a disease people cannot see, you hear this kind of thing, which is why we keep it to ourselves. I can’t speak for Glenn Frey, but when I am ill, I don’t have enough energy to get angry about what has been lost. When I feel better, I don’t want to waste the good moments dwelling on the bad ones. I pretend I’m okay. I pretend to myself that it’s all okay.

I practice denial.

If I sat to counsel someone else living with a chronic diagnosis, I would encourage them to express all their feelings, but I admit I haven’t dealt well with anger. I wish I could blame something or someone, because I don’t want to blame God for this thing I did not cause and no one can fix. I’d like to lash out the way the churchwoman did at me.

I’m still mad that eight years ago I woke up in the middle of one night and couldn’t bend my fingers. I’m mad that the next morning I had to call for my 12-year-old to come and open my bedroom door from the outside, which was scary for her and scary for me, too. I’m mad that while it was really bad we ate a lot of frozen meals from Trader Joe’s and microwaved bags of pre-cut vegetables instead of home-cooked meals, because by dinner time I didn’t have any “hand” left.

With Lucy when I thought I looked good, but was already sick. Mardi Gras 2008.
With my daughter shortly before I became ill.

I’m mad that steroids and inflamed joints meant that over time I lost the body I had when I first got sick; I was in the best shape of my middle years. I’m mad that I didn’t have my A-game to bring in the churches I served as a full-time pastor after I became ill. I’m mad that unless I take ridiculously good care of myself, and sometimes even when I do, I land back in the place I don’t want to be: too ill to leave the house, or hold up a book, or do anything much other than check Facebook on my phone.

No one wants to hear about this. People prefer cheerful denial. I prefer it.

Now, though, it seems that God has some work for me to do telling the stories of other people who have chronic illnesses, and how illness is and isn’t acknowledged in our faith communities. I have ideas and notes and people ready to talk to me, but I confess I’ve been resisting sitting down to do it.

I confess: it’s partly because I’m still mad that this is my story, and it’s partly because I’m afraid that when I share it, people will tell me they don’t have time for complaining.

I confess: I understand why Glenn Frey kept a low profile.

I confess: I’m telling you all this now in hopes I can work through the anger instead of denying it, even though I don’t know what being post-anger and past-denial might feel like.

I confess: I’m telling you all this so maybe you’ll understand why I go to bed when I have a cough.

*****

Many thanks to Kelly Young, an amazing advocate for those of us with Rheumatoid Disease, whose blog RA Warrior has been a supportive resource for many years. I’m grateful to be part of the Rheumatoid Disease Awareness Blog Carnival she hosts; click here to find more great posts about RD.

You’ll find an archive of my posts about Rheumatoid Arthritis here.

#amwriting, NaBloPoMo, NaNoWriMo, Rheumatoid Arthritis

Down Day View

window viewOne of the things I don’t like to tell anyone is that there are some days having auto-immune arthritis means I don’t go anywhere or do much of anything. I know in my higher mind that these are days spent recovering from doing too much the day (or days or weeks) before. Still, it bothers me to have any days like that when there are so many ways to spend my time.

Yesterday was one of those days, so I was glad to see a NaNoBloMo prompt that I could do, even if I didn’t have the hand available to turn it into a blog post at the time. Mary Beth suggested looking out a nearby window, taking a picture, and then writing about what you could see in the picture that you hadn’t noticed while simply looking outside.

This is the view from our living room window across to the Presbyterian Church. It is a view I love, and I was hard-pressed to imagine what I would find that I hadn’t noticed before.

Meanwhile, kathrynzj was coming home with a load of things from our townhouse in the back of her van, and she pulled into the driveway, then backed out again to turn the van around. I took the picture at that moment, having no idea she was back from her errands.

I didn’t type anything yesterday I couldn’t manage on my phone with my left thumb. (I wrote 0 words for my novel.) Today is already better.

 

Finished Objects 2011, Knit Without Ceasing, Physical Therapy, Rheumatoid Arthritis

Physical Therapy

Today I saw the physical therapist to get some help with range of motion issues in a couple of major joints that have been affected by rheumatoid arthritis. We talked about knitting, and how much I love it, and how I try to strike a balance between knitting enough to keep my hands flexible but not so much as to bother my shoulder. I've got to use, but not overuse, my joints. The same principle applies to all physical activity, and we're working together to figure out what will be therapeutic for me. Step one is a series of yoga-type stretches. Step two is using that elliptical machine we have upstairs. And step three is realizing that knitting counts as helpful, too. 

So the socks I finished tonight? Are physical therapy. And to keep myself knitting, I'm going to try and record my finished knitting here.

I've been a pretty big failure at that kind of record-keeping in the past. 

Finished Objects 2011 002 But who knows? This may be the year. It's just that you (and I) may have to settle for quick phone camera shots such as the one here. 

This is a pair of socks for #1 Son. The yarn never made it to the stash, I think I cast on as soon as I got the yarn home from the store. It's Mountain Colors Bearfoot in the colorway Marias Falls, which is deep blue with purple, warm brown, chocolate & dark green. It's meant to be used on big needles, for a bulky sock, but I ended up using size 1 needles and getting a dense, tight, soft sock. #1 Son tried on the first sock when he was here in October, and it's taken a ridiculous amount of time to get around to finishing the second one. These still need blocking, but at least they are off the needles!

I enjoyed working with the yarn, but the proof is in the wearing. 

I have three other projects on the needles (at least I hope it's only three), and my goal is to finish two of those before I pick up anything else. The third is a sweater for LP. I started it quite a while ago and need to assess whether it will still fit and suit her, probably more the latter than the former. 

Tomorrow I start the stretching…more on that when I have something to report.

 

For the Religion Page, Resolutions, Rheumatoid Arthritis

Resolved

Tofutsies I wrote a column for the Press Herald that was in the paper today, and I'll admit it's basically the same thing I wrote for the church newsletter's January edition, too. 

It deals with New Years, and resolutions. In it, I'm taking on one thing. But since writing it, I've chosen a few other things as resolutions for 2011, so I might as well record them here.

1) Pray first. Read about it here.

2) Knit from the stash. I have a ridiculous amount of yarn, even after giving some away, and I'm committed to stash-knitting in 2011. Not that I would turn down gifts of yarn. That's different. In fact, I got some for Christmas, and I'm very appreciative!!! (It's the kind pictured here, in a different colorway, and I am excited to knit with it.) But given the pace of my knitting these days, buying more yarn is just silly.

3) Read more fiction, especially classics. I feel better when I do. I've got a good selection of books on hand and on my Kindle. I read a paltry 34 books in 2010. That won't be hard to beat in 2011.

4) Eat more fruit. I don't belong to Weight Watchers anymore (one of many little economies required by the change in circumstances), but I hear fruit is "free" now. I realize there are other complexities to the new system, but I also know that when I eat a good amount of fruit, I eat less of other things. Thus, eat more fruit.

5) Be brave. Rheumatoid Arthritis has been kicking my — ahem — recently. I'm on new medication, Humira, which requires bravery, because it requires injecting myself. I did it once with the nurse and have now done it once all by myself. It can take as long as three months to see if the new med helps. I am committed to remaining brave about the whole thing and dialing down worry if it occurs. Worry can't help me. 

6) Cultivate patience. I need it while waiting to see about whether Humira works. I also need it because I'm in a frustrating vicious circle where exercise is concerned. Apparently walking an older dog was perfect exercise for me. Without it, I got worse. Now I'm worse enough that I can't exercise. (Unless you can help me think of a form of exercise that doesn't involve my right ankle.) So I need to get better, so that I can stay better not only via meds but via exercise. Which is mildly frustrating, which is why I am resolved to cultivate patience. 

7) Give thanks. I wrote a number of times in December about how great my kids and friends and church members have been in the midst of all the upheaval of the past several months. I am thankful for them. And I'm going to keep letting them, and God, know about it. 

8) Write more, tweet less. I don't mean to say I'm giving up Twitter, but I want to be writing long thoughts, not just 140 character bursts. I'm still using 750 Words, and at least for January, I'm going to try to write every day.

Knit Without Ceasing, reverb10, Rheumatoid Arthritis

Make — #reverb10 day 6

December 6 – Make.

What was the last thing you made? What materials did you use? Is there something you want to make, but you need to clear some time for it?

(Author: Gretchen Rubin)

I made a new stash house for my yarn.

I've been avidly collecting yarn for about six years now, after a long knitting hiatus. It's been in bags and plastic bins, mostly, and in a pretty basket given to me by the lovely people of First Parish Church in Freeport when I finished my interim ministry with them. 

Dresser 001 But the rearrangement of our lives left what was once my Daddy's large dresser without a user, and since LP really needed a bigger chest of drawers, we swapped one for the other, and I now have beautiful yarn storage in my bedroom. 

On top is a long ago attempt at a stole for Advent, made from yarn that stretched to a size far too long for this short preacher.

Which brings me to the last knitting project I completed, if memory serves. I made a stole for my advisee who was recently ordained, using a Noro sock yarn in a delicious array of dark purples, black and green. I believe it will not stretch to a ridiculous length. I hope I'm right. The pattern was a K3, P3, K3 just like the prayer shawls (as was the pattern for the stole on the dresser…). 

I have a several projects in progress: two pairs of socks, a shawlette and a sweater sadly laid aside last year when I couldn't manage sufficient knitting time due to rheumatoid arthritis complications, but it's a good thing, because I only knitted the body in the round from the waistband up and stopped before the armpits and LP is taller now, so when I do start again, it will be okay.  

Really, it will.

Advent, Isaiah, RevGalBlogPals, Rheumatoid Arthritis

No Retreat

I've finally landed on Mondays as my official day off, and today I had plans to spend it quietly participating in the RevGalBlogPals Virtual Advent Retreat.

But just like a pediatrician or a veterinarian, a pastor sometimes finds Monday morning holds the emergencies built up over the weekend, and after several hours on the phone, I decided to call it a work day.

The good news is that part one of the Retreat is aimed at this coming Sunday, thus possibly counting as work. 

The bad news is that it's not on the text I'm planning to preach. 

And I have a mother's task to perform this afternoon, one involving driving and waiting and driving some more.

So I have to work harder to make the space to pull back from life and work and look for God on this first weekday of Advent. 

Here's a snippet of the Isaiah passage in the first post for the retreat:

He will strike the earth with the rod of his mouth;
with the breath of his lips he will slay the wicked.

We're in Isaiah 11, and the words were written about the hoped-for Messiah to people who needed saving, from themselves as much as from the geopolitical enemies in their time and place.

Really, aren't we all like that?

I read something recently about how social rejection creates an inflammatory response (hat tip to Liz), and it gave me a lot to think about since I have an inflammatory auto-immune disease. Actually, I have two, both rheumatoid arthritis and eczema, but the medicine for the first one seems to have gotten the better of the second one, if not the first one. Either way, the tendency in this direction exists in me. And oddly when I went back to look at the link, after mulling it over for more than six weeks, I see it's SENSITIVITY to social rejection that causes the problem. 

For the sensitive such as your Songbird, a Messiah who would slay the wicked with the breath of his lips, literally, would be sah-weet! We want just that kind of a champion. We are the ones who look at life when things are going wrong and invariably find the fault in ourselves. 

I'm struggling today with new symptoms of RA, pain in places I have not had it before, and the feeling that my own tendency to care how other people feel (or don't) about me has made me sick in the first place. I don't like that conclusion. 

Righteousness will be his belt
and faithfulness the sash around his waist.

That's the next thing about the Messiah. 

Some days I wish the rod and the belt could be used more actively. I try to be satisfied with the sash around his metaphoric waist, to believe God is faithful to us, even when things hurt. Especially when things hurt. 

Lion_wolf_lamb And I don't know the answer for the sensitive, and the over-sensitive, among us. Do we guard ourselves from hurt by closing ourselves off? That doesn't seem right. It doesn't seem right at all. 

I would hope that on the day Isaiah describes, on the holy mountain where wolves of various kinds live quietly with lambs and other sweet creatures, the wolves will be healed of their emotionally carnivorous wolfishness and the lambs of their delectably edible lambliness, and all will be beauty and joy. 

Meanwhile, I need to get ready to drive up and down the highway, hoping for a place to sit during the waiting portion of the program that doesn't hurt me.

Bearnaise Sauce Dogs, Grrrls, Rheumatoid Arthritis, Walking

5 by 30

We're looking for new routines here. After 8-and-a-half years, life without a dog or two is very quiet and very strange. I've been waking up early, coming home at lunchtime, walking morning and afternoon, letting furry paws out and back in at the latest possible hour…that's all gone. 

I remember that in the early years, I stressed about fitting in enough activity time for the dogs around my work schedule and parental responsibilities. I may possibly have groused about having to get up early every single day to try and prevent accidents or disasters. But now, of course, I only want to do all those things. 

While revhoney was here visiting last week, we talked about exercise, and I acknowledged that I loved being out with Sam and will miss the walks through our favorite parks and the neighborhood. He was a fantastic dog, on leash and off. Being in the fresh air (even in the winter) was good for my brain chemistry. 

"How can we get you walking?" she asked.

Good question. 

Just last week I clicked on a link at an RA blog, leading to My RA Fit Kit. Amazingly, my RA has been pretty manageable despite the extreme stress of the past six weeks. I took the exercise survey and got advice that was actually unsurprising, because it echoed the advice given my my primary care doctor when I first started to take better care of myself, pre-RA, in 2007. I should be aiming for 150 minutes a week of moderate aerobic exercise. That's 5 30-minute walks, which is about the length which my knee and the joints in my feet and ankles will tolerate. The rest of me would like to walk longer, but I have to listen to the joints.

RA is improved by exercise, but not by overuse.

Keens LP and I talked, and we agreed that we both needed that walk in the afternoon. So today, even though it was brisk, we put on our sneakers and took off for Walk #1. I had to guess what would make a half-hour walk. It's been a while since Sam took one of those, because even before he had cancer, he had iffy elbows beginning this time last year. 

It was also good for us to get back in our neighborhood and walk, to reclaim our space and not let it be lost to grief.

So we took off on a familiar route, and we walked and talked, and when we got home, having moved faster without a dog then I could do with him, it had been 27 minutes. 

I'll be scheming a way to make it take a little bit longer. But that's a good start.

(The strength training? We'll see about that.)