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.