I Sing the Body Electric, Ministry, Mothering, Rheumatoid Arthritis, Roomy Toe Boxes

Idle Hands

Last year, on January 1, 2008, I wrote:

This year, I hope to find more time to simply be where I am, to listen
to what is around me, to let my hands be, at least for short periods,
idle, and my heart open to what comes next.

I got my hope, in a way I never expected. Because I could not use them, I sat with my hands in my lap. I felt, and could not avoid feeling it, disappointment and sadness. I saw my efforts at self-care in terms of diet and exercise supplanted by medication and side effects.

I grieved.

In the midst of it, I got up every day and went to work. I wrote sermons. I wrote things other than sermons. I visited parishioners. I ran and attended meetings, meetings, meetings. I read books and I read scripture. I slept more than I have in years, even naps.

I managed to knit, but much less than I would have liked.

I learned to live with pain, and I learned to ask for help when I really needed it, even if I didn’t want to ask.

I learned to trust the people I love to love me in return even when I couldn’t do all the things for them I wanted to, and even when I tried to do those things and failed. I believed in their love, mostly.

After a tough spring and summer, I looked up one day in the fall and realized that although I face challenges related to RA, I’m not unhappy. I’m not unhappy.

I hope to feel better in 2009. I hope to feel well enough to return to my “Don’t Let’s Call It a Diet” self-care, alongside my “Wish I Didn’t Have to Wear Shoes With Roomy Toe Boxes” self-care. I hope to move on to the next ministry job, whatever it might be and whenever it might happen, with energy and enthusiasm

(And I hope whoever is in charge of the hopes I express here is reading the “feel well enough” part.)

A-Croc-Alypse Now, I Sing the Body Electric, Rheumatoid Arthritis

For I Have Sinned

Bless me, Weight Watchers, for I have sinned. It has been three months since my last meeting. While taking prednisone and coping with the various side effects, I attended a meeting after a good week of counting points, but instead of finding the meeting encouraging–although I'm sure it was, really–I found I could not bring myself to follow the point-tracking, mostly because I felt ill unless I ate at certain times and just could not make the whole program work in my typical perfectionist style.

This week I noticed my scale was under the radiator. Not a good sign. After putting so much effort into taking better care of myself, I had given up on doing anything but taking my Rheumatoid Arthritis meds. Getting to my goal weight just felt impossible. And frankly, my lowest weight came in May, at a moment when I was so ill I didn't care about what I was eating and hadn't been counting or tracking and lost weight because I was ill.

I have to say, this is my first time ever having an illness that potentially causes weight *loss.* But naturally the medication took me in the other direction.

My Saturday morning routine for almost a year was not eating a blessed thing until after I weighed in and sat through my meeting. At the moment, with a dish full of pills to take, and not on an empty stomach, that seems like a pretty distant goal, too. But as I've been listening to the economic news and considering what it takes to get the financial house in order, it occured to me that I might feel a bit better if I started tracking both my checkbook and my food intake more carefully.

It's the Weight Watchers secret: Tracking Works. If you have to write it down, you may well choose better. 1/2 a teaspoon of butter on my oatmeal, measured, is half a point. A knife's worth, who knows?

I can't quite bring myself to go to the meeting this week, but I did start the day by moving the Weight Watchers online link back to my toolbar from a Favorites file, and signing in, and tracking my breakfast. I measured everything. I had brown sugar and butter on my oatmeal, for a total of 1 point. I ate a banana.

Some of my stand-bys of weight loss may not work for me now. Salad doesn't always agree with me due to some of the medicine I'm taking, but I'm going to give it a try again.

It feels risky to put this out to the Internets, because I know tomorrow is the Harvest Dinner at church, and I will be facing a point-related challenge in 27 hours! I know how many times I've said, this is it! I'm taking better care of myself! But I am writing in hopes of encouraging myself to stick with it, to take control of something I can control at a time when so much is beyond me. And I share it with you because so many of you encouraged me in Round One. I have 11 pounds to lose to get to what I weighed at the meeting three months ago. That's my first goal.

And maybe next week I'll go to the meeting. We'll see.

Crazy Busy, I Sing the Body Electric, Rheumatoid Arthritis

Hey!

Before I got sick, I used to love really long days with lots of meetings.

This was one of those days. I had a lot of, lot of meetings. The first one started at 8:30 a.m. The last one ended at 9:20 p.m. or so. In between there were others, and visits, and other business.

I packed a lunch AND a dinner.

I shared a concern with two friends and received their support and later the problem was resolved to the extent possible for today. (Let's just say the church uses a flawed payroll company, and the flaws always seem to come out in my electronic deposits.)

I got home and sat in Pure Luck's lap.

It was too late to see Light Princess; she was already asleep.

Sam and Molly are taking advantage of my late night to get an extra cookie and trip outside.

I'm still pretty keen on long days, I just know they're not so good for me.

Tomorrow will be shorter.

And I have to conclude that I actually must be feeling better, because I got through this day okay and am doing pretty well. This may mean the miserable I felt over the weekend had to do with prednisone withdrawal. Maybe the methotrexate IS working. I'm hopeful.

I Sing the Body Electric, Rheumatoid Arthritis

2.5

Prednisone
I've heard prednisone called "the worst miracle drug ever."

When I started taking it in May, the majority of the improvement came overnight; within a couple of days, I felt almost normal.

But I also felt hungry (like a baby who needed feeding every two to three hours), and euphoric, and I couldn't sleep, or I woke up, more than once a night, in a cold sweat.

So while getting a firm diagnosis of Rheumatoid Arthritis upset me, at least it meant there would be meds other than prednisone in the picture, meds intended to treat my disease and not my symptoms.

We had a plan to decrease the prednisone gradually, and I went fairly smoothly from 10 mg a day to 7.5, from 7.5 to 5. Getting to 5 eliminated the nighttime side effects almost entirely, which was a relief.

The day I left for Atlanta was the day to go to 2.5 mg, to break the little 5 mg tablets in half and take a slim crescent, the last step toward eliminating prednisone altogether.

But I sat in the airport on that day of flight delays and watched my fingers start to swell and felt the odd sensations that I get when my toe joints are inflamed, and I called the doctor's office and received the instruction to wait another month before trying to reduce the dose.

So, yesterday I did it. I took one of the broken tablets, and I waited. I'm going to say I noticed my joints more than I have for a while, everything that tends to bother me did a little bit more than the day before. I'm trying to remember if it didn't feel like this going from 7.5 to 5. I think maybe it did, and then things normalized. One of the side effects of steroid withdrawal, ironically, IS joint pain, so what can you expect?

It's too bad a person can't keep taking prednisone, since it works so well for symptoms, but I've also gained weight and had dental side effects (Hello! Please feel free to have seven cavities!!), and I am very, very hopeful about being able to stop taking it altogether before too much longer. The idea is to give it two weeks at this new level and then stop taking it.

I guess this is also a test of the methotrexate, to see if it works well enough by itself. There are many other medications available for Rheumatoid Arthritis, but you have to prove methotrexate doesn't work by itself before insurance companies will pay for the others, which are, not surprisingly, more expensive.

It's funny that insurance will pay for the drug that works for a lot of RA patients, though no one knows why for certain, but resists paying for drugs developed to inhibit specific disesase processes that are part of RA. Not surprisingly, the reason is money. A year's worth of methotrexate costs under $600 in the generic tablet form, and I pay $136 of that. The newer drugs cost more than $16,000 a year. I have a prescription plan, so I wouldn't have to pay a giant proportion of the cost, whatever drug the doctor prescribes, probably in the neighborhood of $300 annually. I'm lucky in that.

But I also worry about the delay in figuring out whether it's methotrexate or prednisone that has been making life livable, or some combination of the two. I've been on methotrexate for almost 12 weeks, so if I feel miserable without the prednisone, that should be an indicator that other or additional meds are in order.
All this means I don't know what the next few weeks will be like. If I feel okay, that is a sign that methotrexate by itself is enough. If not, there will be another discovery phase to find something that works better.

Sometimes people pray for particular things, perhaps as particular as which drug might work, but I'm simply praying for *something* to work and, whether or not it does, to have the courage to take on whatever comes next. So if you are the praying type and want to join in, I would appreciate it.

I Sing the Body Electric, Rheumatoid Arthritis

Which Would You Choose?

If you were looking for a way to consider your medical situation, which would you choose?

~From the cover of a book handed to me at the doctor's office, the subtitle of Women and Autoimmune Disease:
    THE MYSTERIOUS WAYS YOUR BODY BETRAYS ITSELF

~Or, from the text of Susan Sontag's Illness as Metaphor:
    "My point is that illness is not a metaphor, and the the most truthful way of regarding illness–and the healthiest way of being ill–is one most purified of, most resistant to, metaphoric thinking."

Here at the end of a long day that included the seven little salmon-colored methotrexate pills, a newly-reduced dose of prednisone (5 mg), more of a reaction to the former than I've had for a month and no idea whether the pain I'm experiencing could possibly be such a quick reaction to a lower dose of the latter, I'm thinking I'll choose Sontag.

Which is a tough choice for an English major who loves the metaphors…

(P.S. Think the author of the first one would use that kind of phrase in a book about Men and Autoimmune Disease?)

I Sing the Body Electric, Rheumatoid Arthritis

Set Phasers on Stun

Kirk-phaser
So.

It turns out that even in a moment of crisis, or recognition, or incoming reality, I think of Star Trek.

And so.

When I try to put words on going back to see the doctor and getting his assessment of my ongoing ailment, which at first seemed like one thing and then another and then perhaps another yet, when I try to put words on hearing that it is really the middle one, and it's not the worst news ever compared to some things, but it's also not that great, I think of the geekiest metaphor available to me.

For although I knew it was likely the news I would get, that the doctor would say it's rheumatoid arthritis, I feel a bit like I imagine the theoretical aliens, the bad guys and even the red shirts did when they were hit by the phasers set on stun.

Sometime soon I'll get up off the ground on this alien planet of the inner landscape. Someone will help me back to the ship; maybe Scotty will even beam me up! We'll talk things over and figure out what to do next. Bones will remind me that he's a doctor, not a bricklayer or a mechanic or an escalator, for that matter, and explain about the treatment I'll be getting. Spock will raise an eyebrow and suggest a different and no doubt more logical perspective on things. I will open hailing frequencies (because when I played Star Trek on the playground in 1st grade, I was always Uhura) and figure out where communication needs to occur.

All the parts will come together, and although there may be no magic answers, there will be help and coping and learning to live with what is and to make the best of it.

All that will happen.

I believe it.

But for now, I need a little time to get over being stunned.

Church Life, I Sing the Body Electric

Traveling Light

I'm headed out of town today to attend the Annual Meeting of the Pension Board of the United Church of Christ as a proxy delegate.

Songbird, you may ask, how did you ever fall into such a thing? An all expenses-paid trip to the Big Apple, an overnight stay at the Helmsley Hotel, car service from the airport into the city and back again?

Apparently they needed a female clergyperson from New England to balance the slate of delegates last year, and new delegates this year had to be balanced against those returning, including me.

Last year the arrival day was beautiful and I enjoyed a walk with one of my fellow delegates to the New York Public Library, and an $8 soda in Bryant Park.

This year I'm more likely to stay tucked in the hotel, given how my knee is feeling this morning, but one never knows. Later we receive orientation, are plied with cocktails, hosted at a banquet and sent to bed happy. In the morning, we hear the reports at the Annual Meeting and vote as proxies for all the members of the Pension Board.

Just like last year, I neglected to mail in my proxy. You would think knowing I was going would make a difference, wouldn't you?

I'll have my laptop, so there may be a report in later. Mostly I'm taking it to work on my sermon. I'm also carrying my Kindle, and a piece of knitting to which I hope to add a row or two. My goals are small, very small, in that area.

Most of all, I'm remembering that I attended this meeting last year before I started doing Weight Watchers. Let's just say I'm traveling considerably lighter this June, and that feels good.