Mutual Friends

I have underestimated the power of friendship.  If I sit and think about all the people I have loved or been loved by over the years, I have to admit that I have not been a very good friend.  I mean I have had the kind of friends who drive hours just to meet me for lunch.  I have had the kind of friends who drop what they are doing to stay with my kids for the weekend.  I have had the kind of friends who, after having not heard from me for months, will pick up the phone and continue a conversation as though it was started five minutes ago.  But I’ve not always been that kind of friend.

Rather, I’m sometimes the friend who screens calls, is too busy to grab coffee, and who leaves church during the last song just so I can avoid talking after the service.  Sigh.  I can call it introversion if I want, but really, I’m just not always a great friend.

So, before I get bogged down in guilt and regret, let me share with you what I’ve learned from some of my friends in the past week.

I meet with a group of gals one morning every other week. We call ourselves The Breakfast Club. We are reading through a book together.  We gather to share insights, to pray, to eat, and to encourage one another. Last week, I was headed to this group with an overwhelming emotional burden.  I knew we were supposed to discuss chapter 4 of our book, but I didn’t even take the book with me. Instead, I hijacked the study, shared my burden, and asked the others to just sit with me in my grief.  They sandwiched me between them on the couch, heard the story, and wept with me.

Over the weekend, I gathered with 120 other pastors’ wives from across the state of Michigan. Most of us only see each other once a year, but this sisterhood is strong. We come from diverse backgrounds, we are in different stages of life, and we have a variety of experiences,  but for one weekend a year we laugh together, eat together, sing together, and study together.  In the midst that community experience, sisters share stories. They bear one another’s burdens.  They encourage one another.

Yesterday, on my fourteenth day of this autoimmune flare, feeling the need for some support from others who could relate, I posted on a Facebook group for those who suffer with psoriatic arthritis. I asked a question.  Just one question.  Within moments the responses started.  In the last twenty-four hours, twelve women have responded with information, encouragement, and shared experiences.  Several of these women have been continuing the conversation with me.  I picture us all in our beds or on our couches, feet propped, joints iced or heated, phones in hand, gathering strength from one another. I’m in Michigan, another is in New Jersey;  one is in Australia, another is in the state of Washington.  We are different ages and surely have different personalities, political bents, and religious beliefs.  We have never met or heard of each other before yesterday, but we are buoyed by one another.

When I was in college, I took a couple of semesters of sign language, and still, a hundred years later, some of the signs stick in my head.  One, in particular, is the sign for ‘friend’. Like other signs, the sign for ‘friend’ requires movement.  One index finger is hooked over the other —  a weight depending on the other finger to hold it.  The fingers then change places.  Each finger takes a turn bearing the weight of the other.  I need this visual from time to time.  Too often I am willing to be the top finger, the one that depends on the other to hold me up.  Or, I clench my fingers into a fist, determining that I will rely on no one, thank you very much.  I forget the beauty in the mutuality of friendship.

Yesterday, I opened the mail to find a thank you note from one of my breakfast club friends.  She thanked me for sharing my burden with her last week. She said, “thank you for inviting us to cry with you.”  I was overwhelmed by her thoughtfulness.  Instead of allowing me to feel like I had used the group for my benefit, she implied that my request for support had been a blessing.

That’s how friendship works, isn’t it?  We, sometimes without even knowing it, support and are supported by one another.  And, in this mutuality, we are encouraged. We are reminded that we are not alone.

It takes some risk to invite someone into your life, to allow them to see your vulnerability, your cares, your weakness.  But be encouraged; in the sharing, in the asking, you are inviting a response — a response that builds a bond of friendship.  And let’s be honest, life is much better because of our friends.

Galatians 6:2

Carry each other’s burdens, and in this way you will fulfill the law of Christ.

 

 

Rube Goldberg

rube

You’ve seen a Rube Goldberg machine haven’t you?  It, according to source-of-all-sources, Wikipedia, “is a deliberately complex contraption in which a series of devices that perform simple tasks are linked together to produce a domino effect in which activating one device triggers the next device in the sequence.”

Artist and engineer, Rube Goldberg, drew many of these machines, like the one posted above, I think, to poke fun at humanity and our tendency to take too many steps to accomplish a simple task.  It’s just like us, isn’t it, to create a contraption that involves two people, a kitchen timer, a series of pulleys, and fire, for heaven’s sake, to get an olive out of a jar.

I was thinking about Rube Goldberg earlier today when I started piecing together the series of events that was involved in securing an appointment to get a third opinion on my medical diagnosis. You’d think it might be as simple as taking the darn lid off the jar, reaching in, and grabbing an olive, wouldn’t you?  Pick up the phone, touch a few numbers on a screen, ask a question, put a note on the calendar.  Easy.

But not really.

I’ve put the process off for a while.  Over twenty months ago, my then rheumatologist told me, not for the first time, that since she didn’t agree with my former rheumatologist’s diagnosis of psoriatic arthritis but rather thought I had fibromyalgia, there was no longer any need for me to be seen by rheumatology.  In fact, any primary care physician could manage my pain with prescription NSAIDS.  I should, she said, attend a workshop on fibromyalgia at the university and come to terms with my diagnosis.

I didn’t agree.

I had, and still have, three other members on my team. (I have written about this before.  If you want to meet my team, click here.) They supported my decision to disagree with the fibromyalgia diagnosis.  So, for twenty months, I have worked with this team and have been functioning quite well, as long as I keep my Kristin dial set at about 50-70%.  If I keep my self at a reduced level of functioning, inserting yoga, rest, physical therapy, chiropractic care, healthful eating, and regular walking, I have a manageable level of pain, psoriasis, fatigue, etc.

The problem is, that after a while of 50-70%, I get a little restless.  I think to myself, “Hey, self, you feel pretty good.  It probably wouldn’t hurt if you had three social engagements the week that you are planning to go out of town on a retreat.  I’m sure you’ll be fine.” Yeah, I say things like that to myself and I believe them. Still.  After almost four years in this adjusted reality.  Sigh.

Well, if you read my last post, you know that for about the last six weeks I have pushed myself to function consistently between 70 and 80%.  About 10 days ago, I “fell” pretty hard, and I’ve been hobbling along, still trying to keep the dial set at about 70% ever since. No surprise, I’ve still got significant pain, sustained eye symptoms, and the kind of fatigue that causes me to fumble with words, collapse on the couch, and sleep sometimes 10-12 hours at night.

So I got to thinking, as one does when she’s packed in ice, maybe I should give rheumatology another try.  Maybe 50-70% is my sweet spot; maybe, as I’ve been saying, I do my best caring and listening when I slow myself down enough to notice what’s happening around me rather than constantly pressing full steam ahead.  But maybe, just maybe, at fifty-one years old, I should explore the possibility of improving my health so that I can function at say, 80-90%.  Wouldn’t it be worth a try?

I’d had this thought before the crash, too.  In fact,  I tried to have my last rheumatologist re-examine my file.  In the large university where she dwells, I have to reach out to her through an electronic portal.  I did. A month ago. No reply.

So, last week, when I was face down, I crawled over to my laptop (figuratively, of course) and requested an appointment with her.  They gave me her next available — three months from now. Sigh.

So, I Googled rheumatologists in my area and called one that is in my vicinity.  They are scheduling four to five months out. The receptionist suggested I call another nearby practice since they have more docs on staff and might not have such a long waiting list.

Let me just say here that I really don’t like talking on the phone. I make exceptions for my parents, my siblings, and my children, but when it comes to businesses or, worse, doctor’s offices, I try to avoid phone calling like the plague.  The fact that I was willing to pick up the phone twice in one day last week is evidence of the fact that I was indeed miserable. I felt so badly I was willing to call not one but two doctors’ offices.

And you would think, like I did, that I was pretty close to getting the olive out of the jar. No, I had miles to go, my child, miles to go. The second practice said they were indeed taking new patients, and they were scheduling in the next month.  All I needed to do was get a referral from my doctor and fax my medical records.

Those were the words that Rube was waiting for. You see, my primary doc, a DO who has coached me through homeopathic remedies, advised some nutritional changes, and has prescribed the fabulous physical therapy described here, recently relocated her practice and reduced her office hours.  I sent three emails before I got a reply.  I’ll admit that that last one may have had a tone.  Ok, it definitely had a tone, which is why she called me back and left a message. She asked me to send her a detailed message fully explaining why I wanted this referral. So, I sent email number four. It was a page long.

Then, I tried to request medical records.  Here’s the thing — the new doctor’s office said they needed my medical records faxed to them. My two prior rheumatologists’ offices said they could only email a record. I plead with the new office.  After all, I had two zip drives on the desktop of my Mac.  I could send them my full record from January of 2013 until now — every test, every x-ray, every prescription — in a couple of clicks. Nope.  They “don’t receive email.”

I shared my plight on Facebook and two friends came forward with a plan for how I could use a free website to convert my documents to a fax right from my laptop.  Who knew?

So, while all those gears and pulleys were doing what gears and pulleys do, the weekend arrived and I knew I wouldn’t hear whether or not my primary care doc would give me the referral until Monday.

Saturday morning, after yoga, I was running a few errands when a friend texted me.  She and her husband had tickets to a concert that night.  They couldn’t attend due to illness, would we like the tickets.  My husband and I exchanged a few texts and decided that yes, since going to the concert meant sitting with several other couples from our church we would go.  It would be late, but we were planning on attending the late service the next morning, so it should be fine. (This is how people with chronic illness make decisions, by the way — always measuring.)  A little while later, one of the other couples who was attending the concert texted to say that several were meeting for dinner first, would we like to join.  Well, I mean, we’ve got to eat, right?  These are people we don’t know well; it would be good to get to know them better. I’d be fine to go out for dinner and a concert. (Yes, this is me, continuing to press limits even when I’m already down.)

Why am I telling you about dinner and a concert?  Because the weirdest twist was added to the Rube Goldberg machine.  Eight people at a table and my husband and I end up sitting next to a physician with the same genetic marker that I have. I don’t usually bring up genetic markers over dinner, but he did.  It was weird.  We shared stories and frustrations.  At a dinner we weren’t meant to attend before a concert that we hadn’t planned on.  The next morning, after Easter worship, this same physician waited for me at the back of the church and handed me the names of two rheumatologists at the practice I was trying to get a referral to.  He had researched them when he got home the night before and thought that of all the doctors at that practice, these were two he would recommend.

Monday morning, I had an email from my primary care doc.  She had sent the referral. Today, Wednesday, I got a phone call from the new doctor’s office.  I pulled the recommended names out of my purse while I was on the phone with the receptionist and took a deep breath before I asked if there was any chance that my appointment could be with one of them, who just happens to not only be a rheumatologist but also an optometrist.

And just when I was starting to think that the whole thing would come crashing down, that I wouldn’t get my olive after all, the receptionist booked me with that specific doctor for an appointment just under two weeks from now.

Rube Goldberg? I think not.  I know only One who can take a very frustrating and seemingly hopeless situation and make it work out better than I had asked or imagined. And do you know what? The elaborate machinery of it all, the Divine intervention of it all, has dispelled my anxiety about going to one more doctor, telling my story one more time, and risking the possibility that she won’t have any answers for me at all.

Because I know who does have the answers, and, because of that,I am not afraid.

Romans 8:28

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

 

 

 

 

 

I’ve fallen, and I’ll eventually get up

It couldn’t have been the women’s retreat over a month ago. It probably wasn’t the day trip over Spring Break.  Or the hours of tutoring. Or teaching two classes. Or two recent back-to-back road trips. Or the fact that I haven’t found a free hour in the past month to do any blogging.  No, not one of those things slammed me to the floor.  In fact I was standing up straight and moving around freely even through this weekend’s musical that went way past my bedtime and through the day-long festivities yesterday at our church. Not only that, I woke up today, planned two classes, graded some papers, taught on my feet for two hours and then gave a private lesson before coming home at 5 and making a double-batch of caramel corn. I had two loads of laundry folded and the ironing board set out when I finally admitted that I could do no more.  I grabbed an ice pack and found my way to the floor.

I stayed there icing through the news, Wheel of Fortune, and Jeopardy.  Then, I switched to heat for The Voice.  The ache was deep in my hips, sacrum, and sacroiliac joints. Nothing was dulling the edge.  Glass of wine?  Tried it.  No help.  Then, although I have been committed for over a year to no NSAIDS or other pain meds, I finally caved around 8:30 and took 400 mg of Ibuprofen.  An hour later I took 400 mg more.

I put myself in bed and willed myself to sleep.  No chance.  It’s been a while since my pain, which usually fluctuates between and 3 and a 6 out of 10, has climbed the scale up to what I would call an 8.  I’m calling it an 8 because I can still move — slowly and with audible involuntary groans — from standing to sitting to lying, but I can’t stay in any of those positions for very long before I determine to try yet another strategy.

Around 11:45pm, I climbed into the tried and true epsom salt and baking soda bath.  The deep ache persisted.  I stayed there for more than 30 minutes, trying to give the magic a chance to work.  Finally, I admitted one more defeat, crawled out of the tub less than gracefully, dressed, ate a banana, and thought to myself, “Have you found a limit, then?”

Just yesterday, a good friend said to me, “You need to find some time to rest.” My husband, bless his heart, also gently reminds me and then lets me figure it out. He knows that I want to seem ‘normal’, even if temporarily.  The longer stretches I have of doing well, the more I question the validity of my limitations. When I begin to doubt my limitations, I attempt to accomplish even more.  It’s a vicious cycle.

Anyone with a vague diagnosis or an invisible illness will tell you that we are our biggest skeptics.  Although we may have very difficult days, characterized by extreme fatigue, insistent pain, or a rash that erupts (right on my face, thank you very much), we also have days, weeks, and sometimes up to a month or more, when the symptoms seem not so noticeable.  We begin to question ourselves, “Surely, you aren’t really as sick as you think; certainly you can see one more student and sit through a play on a Saturday night. Toughen up a little.” It’s as though our worst symptom is amnesia — the forgetting of the consequences that come from forgetting.

When I forget to pace myself, I may do alright for a few days, or a week or a month. However, if I keep forgetting, I will eventually get a reminder. I’ve had many over the last month. When I sleep for over 10 hours in a row, that’s a reminder that I’m depleted and I probably need to take a few slow days.  When I get a psoriasis or eczema breakout, that’s a reminder. I call it the ‘slow simmer’. The symptoms are beginning to bubble up, and if I don’t turn down the heat, they are going to reach a full boil. When I notice that I have to take stairs one foot at a time, I’m probably too far down the path to avoid the crash. Yesterday, when my friend, who has noticed my pace, gently nudged my memory, I said, “Yes, if I don’t willingly take a break, it will be thrust upon me.” And in a very speedy fulfillment of prophecy, here I am.

It’s been over four years now that I’ve been living in this strange reality — the reality that was named, and then unnamed,… That’s part of the struggle, too.  I don’t know what to call this ‘thing’ that I have.  People ask me. Often. And I give some kind of mumbled reply about autoimmunity blah blah arthritis blah blah eyes blah blah skin blah blah.  By then they are more confused then I am.  They don’t understand, because neither do I, why I choose not to eat gluten or dairy if I don’t really notice a difference when I do.  If I try to explain that no, I don’t drink coffee because it cancels my homeopathic medicines, again, I just hear myself sounding like the teacher in the old “Peanuts” cartoons. Blah, blah, blah.

So, why am I writing about this at 1 o’clock in the morning? Because that’s what I have. Writing continues to be the way that I think through all of this and try to find the meaning.  And yes, I realize, I just have to go back a post or two to the last time I wrote about how blessed I am that God has provided this season of slowness, that He has allowed me time and space to be aware, to be available, to just be.  But just like every other gift I’ve been given, sometimes I don’t appreciate fully it.  I want to take it back to the store and see what I can exchange it for.  I think I’m going to find something better, you know?

If I go just a few posts further back, I will be reminded of the drawbacks of soldiering. Just typing that word calls me out, doesn’t it?  I don’t even want to go back to the first paragraph I wrote here today, because that’s what I’ve been trying to do — go back to my soldiering ways.

If I don’t stop writing here, I’ll start drawing parallels to the ancient Israelites…and it’s already 1:15 am and I’m already at over a thousand words.  So, go ahead and draw your own conclusions. By now, I’m sure you’re way ahead of me.

As for me, I repent. I’ll try to get some rest. And then I’ll probably cancel my tutoring for tomorrow.  Because sometimes even retired soldiers need a little R ‘n’ R.

Matthew 11:28

“Come to me, all you who are weary and burdened, and I will give you rest.

 

 

Making Up for Lost Time

During all my years of soldiering — of butt-kicking and name-taking — I was in constant motion, often simultaneously cooking, doing laundry, answering email, talking on the phone, and granting or denying permission to one of my children.  I got a lot done.  It seems that I was able to keep a clean house, feed a family, teach hundreds of students, and arrive most places fully-clothed for quite a few years. The down side? Very little time to reflect — very little time to examine options, consider outcomes, or feel.

I’m making up for lost time. Obviously.

In days of yore (Why, sonny, when I was your age…), I looked at the myriad obligations of the members of my family, the limited functions of two vehicles, and the tight schedules my husband and I kept, and I quickly formulated and executed a plan that accommodated everyone.  I planned my work and worked my plan.  “Here’s what’s happening today,” I would say, “You two will come with me to school.  After school, while you are at practice, I will get groceries. I’ll be back to pick you up.  When we get home, you’ll unload and put away groceries while I cook dinner.  Meanwhile, Dad will take you (other child)  to your different school.  He’ll go to work then pick you up after your practice, stop by Walgreens to fill your prescription, then meet us back here.  We will eat at exactly 5:30 because then, Dad has a meeting, I have parent-teacher conferences, two of you have homework to do, and the third one has to be at a study session on the other side of town.”  I would hit the start button and the plan would be executed.

Nowhere was there time for contemplation, negotiation, or revision.  We were in “go” mode.  In some ways, it was necessary for the season of life we were in with three kids in high school all at the same time, however, I think it could’ve been handled differently.  I think I could’ve let some stuff go.  I could’ve slowed down, allowed the kids to eat cereal for dinner more often, and let my laundry pile up.  I could’ve valued processing over producing. Contemplating over completing.

So, yeah, I’m making up for lost time.

I’m currently reading three books.  One is a book I am reading with my Bible study gals, Ann Voskamp’s The Broken Way.  Another was given to me by my physical therapist/counselor/friend, Doing Well at Being Sick by Wendy Wallace.  I also picked up Shauna Niequist’s Bread and Wine: A Love Letter to Life Around the Table with Recipes.  Why am I telling you this?  Well, it’s interesting to me that I have time to read three books, for one thing.  Also, I notice that I am interacting with these books, writing notes in the margins, going back to my notes, and thinking about what the books are saying to me. And, third, I am intrigued by the fact that these three books are speaking to each other.  It’s like they are three friends that said to one another, “Hey, guys, Kristin’s been still for quite a while now.  She might finally be able to hear us.”

And what are they saying?  Well, it’s not really shocking, because they are saying the same things that I have been discovering, thinking, speaking, and writing about for the past three and a half years.  However, I think what’s interesting is that I am noticing.  I am processing. I am digesting. I am not more interested in completing these books than I am in connecting with them.  I am not compelled to finish them; I am drawn to understand the meaning they have for me.

And really, the meaning is this — my soldiering is done. Even though I’m tempted almost every day to go back to that life, I am no longer capable.  God, in His mercy, has chosen a better way for me.  He has allowed limitations in my life — real physical limitations — that stop me from soldiering so that I can live a life that reflects, that feels, and that makes space for others. Because on my own, I wouldn’t have stopped soldiering, guys.  I would’ve keep right on kicking butts and taking names.  God had something better for me. Yes, you heard me right.  My “broken” life, my life with the limitations of chronic illness, is a higher quality life than my “un-broken” life.  In fact, my “broken” life is more whole than the “unbroken” one was.

It’s a paradox, to be sure. God is often paradoxical, isn’t He?  His brokenness makes us whole.  By His wounds we are healed. He turns our mourning into dancing. He doesn’t always make sense, but today I’m not going to question Him. I’ll just thank Him.

I Peter 2:24

“He himself bore our sins” in his body on the cross, so that we might die to sins and live for righteousness; “by his wounds you have been healed.”

Best Practices

In my trudge through the mundane and my continuing struggle with crabbiness, I am making an effort  to be intentional about my ‘best practices’.  Why is it so hard to do the right thing?

I get pretty methodical about attending yoga class 2-3 times a week, but this has a pretty significant physical pay-off almost immediately.  The strength and flexibility I am obtaining and maintaining from regular yoga is noticeable. Of course, the mindfulness of attending to my breathing and setting aside my “brain activity” for an hour or so a few times a week has emotional pay-off as well.

I also don’t struggle with eating foods that improve my health.  Although I don’t notice an immediate positive payoff from eating the right things, I do experience almost immediate consequences if I eat the wrong things.  For instance, because I take homeopathic remedies, I don’t drink coffee.  Apparently coffee can ‘cancel’ any benefit you get from homeopathic remedies.  Last weekend, to celebrate my mother’s birthday, I had a small glass of kahlua — the only alcohol my mother drinks.  (And when I say ‘drinks’, I mean “flavors her ice cream with.”) It didn’t dawn on me until about 24-48 hours after that glass of kahlua that  kahlua is made from coffee.  Why did I remember?  Because the psoriasis on the palm of my right hand that had been almost completely under control, raged angrily.  When I had scratched my palm to the point of bleeding it occurred to me that perhaps I had ‘cancelled’ out my homeopathic benefit. Ok, fine. I’ll stay away from coffee and kahlua.

Exercise and diet are very easy for me to maintain.  I probably owe that to my history with an eating disorder.   Although, my motivation has changed over the years from losing weight to feeling well, the ability to stick with a plan is pretty solid.  However, the best practices that attend to my spiritual health are so much harder for me to maintain.

One hundred and twelve days ago, I got the YouVersion Bible app on my phone.  I committed to reading the entire Bible in one year because our campus pastor told me to.  I’m pretty good at following instructions, but I’m also pretty good at procrastinating.  I’m almost always running about three days behind in my reading, but I discovered recently that if I put in my headphones and listen to the daily readings while I walk, I am more inclined to stay on track.  I’m not as religious about Bible reading as I am about getting my steps in. (Insert eye-roll here.)

Last year, you might remember that I was reading Beth Moore’s Whispers of Hope: Ten Weeks of Devotional Prayer.  The book encouraged me to write down my prayers in a journal after reading each devotion, so I did!  It was a great practice.  In fact, I think I have read through the book almost three times.  But when I don’t pick up the book, I don’t write down my prayers.  And, full disclosure, when I don’t have a regular time devoted to writing down prayers, my prayers often devolve to haphazard spur-of-the moment utterances.  Yeah, it’s embarrassing.

And you remember my battalion? My group of ladies that I met with on Wednesdays the first two years that I was in Ann Arbor?  The ones I did countless Bible studies with, prayed with, and got encouragement from?  Well, my schedule doesn’t permit me to join them any more.  And, though I claim to be mostly an introvert (yes, I know I look extroverted sometimes), I need the community of ladies and the regular time in my schedule to ensure that I am working through a Bible study, challenging myself, and connecting with God through Scripture in meaningful ways.

Not only that, I need my Sunday morning body of believers and a regular message from my pastor.  Even that has been disrupted over the last several months.  Because we had the distinct privilege of traveling to South Africa and Israel, the opportunity to visit with family over the holidays, and the honor of joining other congregations where my husband preaches, our attendance at our own congregation has been spotty.  Yes, we have worshipped in other places — almost every Sunday, but it is not the same as gathering with our own church family and experiencing the spiritual journey that happens when you join with others in one place.

Failing to follow these spiritual best practices — daily Bible reading, prayer, group Bible study, and community worship —  has consequences that, although not immediately noticeable, build over time and become quite evident eventually. Eventually has arrived. The evidence of spiritual apathy over here is quite real.

So, how am I returning to these best practices? Sluggishly, I’ll admit.  As I mentioned, I’m plugging into my Bible ‘readings’ while I walk.  I am meeting with a few other women who have committed together to reading Ann Voskamp’s The Broken Way.  And, on weeks like this one, where I am not attending my own congregation, I am re-committing to regular attendance at chapel services here on campus.  I guess you could say that the campus community is our second congregation — we grow within this spiritual family, too.

My blog seems to follow a theme.  I’ve been teaching my literature students that authors use themes to convey messages through their writing.  Those themes, I tell my students, can be stated in terms of a subject plus a verb — for example, ‘struggle transforms’, ‘tradition endures’, and ‘lies always surface’.

I force my students to follow a formula when writing analytical thesis statements — Author, in Title,  verb + how or why.  For example, I might write this on the board tomorrow: ‘Mark Haddon, in The Curious Incident of the Dog in the Night-time uses Christopher’s struggle with autism to convey the theme that difficulties can be overcome.’

Or, I might write this: ‘In the story of my life, God, through continually offering grace despite my habitual turning away, conveys the theme that He loves me.’  That’s His best practice.

Jeremiah 31:3

“I have loved you with an everlasting love; I have drawn you with unfailing kindness.

 

Thoughts on a Sabbath

I’m sitting at the corner table in The Common Cup, the coffee house located in the basement of the church building where our congregation meets.  I often sit here in the mornings when my husband, a pastor, preaches two services on a Sunday morning. I like the dedicated time to think, grade papers, or write before I go upstairs for the second service.  The baristas brew me an extra strong pot of English Breakfast and I sip on it while I sit listening to quiet worship music and working on whatever is in front of me.

Today, I don’t really have any work.  I finished teaching a summer course on Friday.  I don’t start teaching again for almost a full month.  Yes, I have plans and syllabi to write.  Yes, I have grade books to set up. I have plenty of work for the week ahead of me, but today I am resting.  I am resting from duties to spend my day blogging, reading, puzzling, and breathing.

I highly recommend it — this kind of resting.  I do realize that many of you have determined to observe a Sabbath every week.  You regularly take a day to turn away from work to rest for a full day.  I mean, it’s Biblical.  However, it’s been a difficult concept for me to wrap my brain around.  For a long time, the concept of Sabbath felt like an obligation rather than an opportunity.  I have felt guilty for not taking a Sabbath rather than thankful to have one.

Perhaps you can relate.  My husband and I have long been church workers.  Making Sunday a Sabbath is a challenge for church workers.  How do you find rest on a day when you have a sermon to preach, lessons to present, needs to respond to, and expectations to meet?  Some church workers manage to do it; I’ve never gotten the hang of it.

Or, perhaps your weeks are so full with work and family obligations that taking a full day to rest simply seems impossible.  So many of my weekend days have been crammed full of grocery shopping, laundry, house keeping, errand running, and catching up.  Some of you manage to do all of those tasks and still find room for a Sabbath rest; again, I haven’t really figured it out.

Even now, when I am no longer working full time, I still struggle to keep a day completely free from ‘work’.  I usually slip in a little bit of grading, a little bit of editing, a smidge of house work, or a trip to the grocery store.

However, one thing my chronic illness has taught me is this — our bodies (at least my body) need time to recover, time to heal, time to restore, time to prepare for what is next.  If I power through, if I fail to rest, fail to take consistent breaks, my body often shuts itself down and mandates a day or two of bed rest.  This has happened over and over again; I am starting to get the message.  If I preemptively take a Sabbath, as God’s Word has recommended, then I don’t crash as often.

Not only do our bodies need consistent breaks from work, but also our minds, our spirits, our souls. On Friday, after five weeks of teaching a composition class, I got caught in a rain storm — twice.  I was soaked to the skin, but I was determined to run a few errands before I went home.  I was tired before I started, but I pressed on. I stopped at four different places before I considered going home.  I was hungry.  I was exhausted.  I was cranky.  Instead of taking consistent rest during the five weeks of teaching, I had tutored; I had taken weekend trips;  I had pushed myself to my limits.  Later Friday night when my husband got home from a business trip, I really wanted to welcome him back, but my fatigued, depleted spirit was edgy.  My tone was sharp.  My glance was surly.

We expect a lot from ourselves.  We push ourselves to do just one more thing — one more email, one more errand, one more social engagement.  But guys, what we really need so that we can more fully experience our lives — fully engage with the people in front of us, fully care for the people we love, fully attend to our work — is regular time to recover.

It’s funny, I was writing this post this morning at church.  I saw my computer draining of battery, but I thought, I can probably finish before it runs out.  I couldn’t.  My screen went black, so I had to rest from my blog about resting.

I went to worship.  I chatted with friends after.  My husband and I stopped at the grocery on the way home. (Insert eye roll here.) We ate some lunch, then I worked on my puzzle while listening to a book on tape.

Since it was time for my afternoon tea, I grabbed my laptop, moved outside to the patio, and sat in my reclining lawn chair to finish my musings.  It’s after 4pm and I truly have rested from work most of the day (if you overlook the groceries). My aspirations for the rest of the day?  Right now they include staying on this lawn chair a little longer.  I haven’t thought beyond that.

I could get used to this.

Leviticus 23:3

“‘There are six days when you may work, but the seventh day is a day of sabbath rest, a day of sacred assembly. You are not to do any work; wherever you live, it is a sabbath to the Lord.

A glimpse at autoimmunity

Almost five weeks ago I decided I should call my eye doctor.  I have recurring HSV (herpes) in my left eye, and I was sensing that a flare was brewing.  Since we were supposed to leave on vacation at the end of the week, I thought I should be seen by my cornea specialist before we left town.  He agreed.

He examined my eyes and said I looked ‘normal’ and should be fine on my vacation.  I exhaled,  thanked him for fitting me into his schedule, then went to see my integrative medicine specialist.  She, too, said I looked pretty good, but thought I could be doing even better.  She prescribed a supplement that would work on the cellular level to address the cause of my autoimmune difficulties.  Feeling hopeful, I  thanked her  and went to the chiropractor.

I know, I know.  Three docs in one day.  I try to schedule them this way because I don’t like going to the doctor, so if I have to go, I want to do them back-to-back and get it over with.

The chiropractor, too, said I looked good.  He adjusted my sacroiliac joint, my back, and my neck and sent me to “have a great vacation!”  I was all set.  I had the blessing of my docs; in two short days we would be on our way.

Because we were going to be gone for two weeks, I had three students to see that afternoon. Halfway through the second session, my student looked at me and said, “what’s wrong with your eye?”  Now, my eyes are typically a little red, so I wasn’t terribly alarmed, but he is a fourteen year old boy, so the fact that he noticed anything outside of himself was a little remarkable.  I went to the restroom and noticed that indeed my left eye was quite red and, as a matter of fact, somewhat painful.

This is how things go sometimes in the world of autoimmunity.  Just when you think you are doing fine, you aren’t.

The next morning I called Kellogg Eye Center and explained, yes, I was just seen yesterday, but a lot has changed in twenty-four hours.  My eye is flaming red and I can’t really open it when I’m outside because of the pain I am experiencing.  They got me right in.

It wasn’t HSV.  No.  It was a new malady — episcleritis, the inflammation of the lining of the eye.  The doctor thought that 800mg of ibuprofen three times a day should do the trick.  I balked at this because I have been off all anti-inflammatory meds and pain meds for several months.  However, she pressed me and said that it wouldn’t likely go away without them.

It took most of the weekend visiting with our granddaughter before my eye was feeling mostly better.  It was still a bit red, but I was determined to enjoy our vacation.  Yes, I had to wear glasses instead of contacts, but over the past four years that has become a fairly regular practice due to the herpes.

Feeling hopeful, we set off for our next location, Northport, MI.  The first two days there were fine. I kept taking my ibuprofen while we visited with friends and family in this beautiful area of Michigan.  However, the third morning, I woke around 5am with intense pain in my eye and through the upper left portion of my head.  I took my medication.  I applied a warm compress.  I stood in a warm shower.  Nothing gave me relief.  After a series of phone calls, my husband drove me forty minutes to see the nearest cornea specialist.

They got me right in!  In fact, within one hour I was seen by two doctors who agreed that I needed to be on prednisone — in both oral and eye drop form.  Because of my HSV, they also increased my anti-viral meds to prevent  an HSV flare.  I would have to come back the next day to make sure this treatment was working.

It worked well!  I got relief from the intense pain within the first hour!  The following day the doctor didn’t even recognize me because I had been so transformed from a writhing mass of pain into a functioning human.  Since episcleritis is so insidious, the treatment involves a very slow taper away from the prednisone. That is why, five weeks later, I am still on it.

Now let me tell you the blessings of prednisone.  I have had a significant increase in energy.  I enjoyed our vacation immensely!  What typically wears me out seemed routine. I not only enjoyed the beach and visiting with friends and family, I also had the energy to read late into the night.  Not only that, but within about a week of starting the prednisone, I was virtually pain free!  No eye pain, no hip pain, no neck pain. No pain! Anyone who lives with chronic illness will tell you that being pain-free is not really even a goal.  We have come to terms with the fact that we are going to have a certain level of pain at all times.  Being virtually pain-free for the last four weeks has been a blessing I never would have expected.

Prednisone does have its drawbacks though.  For one, especially in the beginning when the doses are high, sleep is difficult.  Some nights I barely slept at all.  Fortunately, I was not working during this time, so if I stayed up all night reading or putting together a puzzle, I could walk around zombie-like the next day with very little consequence.  Secondly, while on prednisone, people tend to put on weight.  Since autoimmune disease often leads to weight gain on its own, this additional challenge was not welcome.  I had been very disciplined to lose about six pounds over about four months only to have half of it come right back on.  Three pounds doesn’t sound like much, but my body takes it off very slowly.  Finally, prednisone regimens usually involve a decrease in dosage over time, so eventually, some of the benefits wear off.

Translation — I’m now on a mere fraction of the original dose.  I’m sleeping more easily, but the pain in my joints is starting to creep back in.  Not only that, I’m a little nervous that the episcleritis will come back.  Yesterday morning I woke with that familiar headache in the upper left portion of my head.  I took my meds and it mostly went away, but I wonder what will happen when I am off prednisone completely.

This is another feature of autoimmunity — trying to find the right treatment balance when the body is always changing.  One drug will manage a particular symptom or set of symptoms but will also cause a series of side effects.  Sometimes another drug is prescribed to manage those side effects.  Many people, like me, choose to limit/eliminate pharmaceuticals because of those side effects.  We might try diet, exercise, homeopathic remedies, or treatments such as physical therapy or chiropractic care to manage our symptoms.  Sometimes our strategies work for a season or even years. Often, they fall short and we have to try different options.

It’s a journey to be sure.  It can be time-consuming, frustrating, plan-changing, and life-altering.  Sometimes I get angry that I am living with this disease, but mostly I have accepted this as my reality.  And, weirdly enough, I am often thankful for its impact on my life.

In the past four years I have experienced a multitude of negative symptoms, but I have also had the blessing of slowing down. Slowing down has afforded me the opportunity to pay better attention to the people around me, to read more, to write more, to think more, to enjoy more.  It’s weird, but it’s good.

 

Romans 8:28

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Danger! Danger! Danger!

One dichotomy of thinking that I have clung to in various ways for most of my life is a bit embarrassing to admit:

If I am thin, I am valuable; if I am fat, I am detestable.

This belief led to a certain degree of self-loathing in my adolescent and young adult years and then propelled me into the disordered thinking and distorted body image that supported an eating disorder and remnants of one for much longer than I would care to admit.

‘Thin’ as defined by me has meant a variety of things. Its worst definition was a denial of self — a refusal to care for my needs in favor of controlling my body to attain and maintain a particular size.  Over the years, the definition morphed into something more socially acceptable — a particular dress size, for instance, that could be maintained through regular exercise, an aversion to excess, and a more private critical eye that was still always trying to find a way to weigh just a little bit less.

‘Fat’ as defined by me has meant anything over a particular number on a scale, laziness, apathy, and a refusal to take charge of one’s life.  I had been ‘fat’ in my younger years.  I didn’t like myself then, and I wasn’t going back.  I had control over my body.  Fat people were simply ‘less than’ me.

See why I am embarrassed?  I had put myself into a category, ‘thin people’, and, in so doing, had positioned myself in opposition to those outside of that category.  Now, in my defense, this was not conscious.  I would have never admitted this out loud.  I pride myself in treating people fairly, not judging a book by its cover, but looking on the inside to find value and worth.

But, I’m admitting here that I have been a hypocrite. And, as with almost every other judgment I have made in my life, my judgment of ‘non-thin’ people has had more to do with what is inside of me than what is inside of them.

I know this because in the last three and a half years that I have been dealing with health issues, I have been slowly putting on weight.  It’s now up to twenty pounds.  My clothing size has changed.  The number on the scale has exceeded my ‘safe number’.  I don’t like how I look.  I don’t like how I feel.

I’ve been trying to accept it.  I have bought some new clothes.  I have done a lot of self-talk.  I have continued to exercise.  I have continued to watch what I eat.  I keep telling myself, “this is not a failure; it is a disease.” Or, “you don’t have control over this, you will have to adapt.”

So last week when I went to see my doctor, I said, “My weight keeps climbing.  It edged up again this time, didn’t it?”  I think inside I was hoping she would say, “you don’t have control over this, you will have to adapt, it’s part of the disease.” But do you know what she said?  She said, “I want you to keep track of everything you eat for a while, so that I can see what is causing this.”

Gasp. You mean it’s something I am doing? I might be able to control this?

Danger! Danger! Danger!  All the alerts are going off in my head.  Keeping track of what I eat was a gateway to anorexia over thirty years ago.  Each day I tried to eat less and write down less. If I write down what I eat now, I will fall back into this disorder.  I can’t do that!  I have to let myself eat whatever I want.

Did you hear the dichotomy? Either I eat whatever I want, or I will have an eating disorder. It’s simply not true, but this is challenging territory.

Can I be attentive to what I eat without being restrictive? Can I assess what I am eating without the pressure to trim down? Can I trim down without dieting? Am I comfortable allowing my doctor to see everything I eat (or don’t eat)?  Am I willing to let her speak into this?

Before I could go too far down the rabbit hole, I blurted out in her office, “I used to be anorexic….” Phew! I got it out.  “Well,” she said, “we don’t want to get anywhere close to that, but we do want to make sure that what you are eating has a healthy ratio of fat to protein to carbohydrate.”

I didn’t initially want to follow her directions.  And then, I wanted too badly to follow her directions.  I started thinking, “well, I could lose those twenty pounds and get back into all of my old clothes….” That’s all it takes for me, really.  Just a quick thought and I am off and restricting.  Quietly.  In private.  Hiding my plans from others who might want to stand in my way.

For the first three days I recorded what I ate quietly on my phone app without telling anyone.  And, of course, I limited what I was eating so as to ‘eat less’ than the prescribed number on the app. Sigh.

Then, I told my husband about the app.  Now I am telling you.  I am not going to believe the dichotomy any longer.  I have value and purpose regardless of a number on a scale or a dress size.  My weight does not define me.  I can watch what I eat without being restrictive.

I can evolve past this dichotomous thinking.  God has so much more for me.

Romans 12:2

 Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

In My Weakness…

Yesterday I was lying on a bed at my physical therapist’s office.  She takes over an hour with me every time I visit.  She finds me in the waiting room; she watches me stand; she watches me walk; she leads me to a room, then watches me sit.  She asks me how I am —  what are my presenting symptoms.  She listens.  She types what I say on her computer, compiling a record of my health and my progress. As I stand again, she assesses my posture and my spinal alignment. As I lie down, she feels my pulses and checks the position of my joints.  For over an hour her hands are on me.  She applies pressure to my skull, to my vertebrae, to my ribs, to my organs, to my back, to my hip.  And the whole while that her hands are on me, we are talking. We talk about family, about faith, about health, and about the body. We’ve been doing this since November.  More than any other practitioner I’ve ever met, this woman knows me.

Since the very first appointment with her, I have felt very comfortable in her presence. I feel like my body is being cared for, and even ministered to, every time I am on that table.  What’s more, is that my spirit seems to be ministered to as well.  Marcy, when she places her hands on me, says that she is ‘listening’ to my body.  I believe, after many hours on that table, that God uses that physical connection to forge a spiritual connection.  And through that spiritual connection, He often impresses His truth upon me. I have written about this before (hereherehere).  Perhaps because I am still for a complete hour, perhaps because Marcy creates an atmosphere of ‘listening’, or perhaps because I am so open and receptive to the possibility of healing, I receive from Him while I am lying on that table.

Yesterday, less than a week into my experiment of living without NSAIDs, I bundled up and drove thirty minutes across snow-covered roads because I believed that Marcy’s touch would be helpful.  I wasn’t wrong.

Somewhere during that hour on the bed, I was sharing with Marcy about some students I had been working with this week, and I heard myself saying, “You know, I feel like I do a lot of complaining about my pain, but the truth is, I wouldn’t have any of the opportunities I have right now, if I wasn’t in this current physical state.”  Right at that moment I remembered the words, “my power is made perfect in weakness.” Marcy didn’t say those words.  I didn’t say those words. I just remembered them.

Later yesterday, as I was driving home in my car, I remembered those words again, “my power is made perfect in weakness,” and I began to think of my low batt. analogy.  I love it when I am fully charged — I feel like I can conquer the world.  I charge through life in my power shoes, kicking butts and taking names.  In fact, try not to laugh, when I was in my prime, I jokingly told my students to refer to me as “the great and powerful Rathje”.  Ok, laugh.  We always did.

I don’t love being at low batt.  I don’t feel like I can conquer the world.  I have to sit down a lot.  I move slowly — very slowly this week. I cannot kick any butts or even remember many names.  Yet in this posture — this posture of sitting, lying, walking — I am able to see the opportunities that God is placing in front of me.  They aren’t glamorous.  They aren’t highly visible.  But they are life-changing.

This morning, I searched Biblegateway for the verse that had been on my mind all day yesterday.  I found it in this context:

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I’ve been praying, pleading with God, way more than “three times,” that He would heal me, but I find myself saying, “Lord, please heal my body, but more importantly, change me.  Don’t let me go back to my soldiering ways. I would love to be free of pain, but only if I have fully learned everything that you want to teach me.”  The pain sucks, kids. It really does. Especially this week. But living a life that fully relies on me sucks even more. 

I’ll be over here on the couch, icing, and being thankful that God’s power is made perfect in my weakness.

Icing

I’m sitting on the futon next to a sleeping golden retriever.  I’ve got an ice pack that I reposition on my back, then my hip, then my shoulder, then my neck.  It’s a little ironic that I’m applying ice to my body in the middle of a winter storm.

I can hear the snowish-rain and rainish-snow pelting our concrete roof.  I’m happy that I made the decision to cancel this afternoon’s tutoring sessions in a neighboring town.  I really wasn’t up to the drive, or the sitting at a table for three and a half hours, or the critical thinking that would’ve had to happen during those hours.

The weather was my excuse, but it would’ve been just as legitimate to call off on account of my physical state.

And here I am again, writing about this invisible illness that tries and tries to steal my joy.

It’s not going to win, ultimately, but my body and I are in a wrestling match right now.

Just over three years ago I got my first diagnosis — psoriatic arthritis — and I did what I thought I was supposed to do: I took the medication.  I can’t even tell you all the different things that I have tried — whatever is the standard regimen for these types of things — some kind of pills, then another kind, some injections, and finally, the latest strategy prescription NSAIDs.  I’ve been on diclofenac (Voltarin) for a couple of years now.  It was managing my pain pretty well, actually. I would say that while on this drug, an average day meant consistent pain levels of 2-3 on a scale of 1 to 10.  Bad days might surge up to a 5, but not usually higher than that.  A five is manageable.  It slows you down, but you can still function.  It drains the battery, but you still get some limited functioning.

Well, as part of my quest for health, I read a book called Total Recovery, by Dr. Gary Kaplan, a doctor at the Kaplan Center for Integrative Medicine, and an associate professor at Georgetown University.   I’ve mentioned this book before in this blog.  It has really challenged my ideas about medical practice and the use of pharmaceuticals.  Dr. Kaplan cites research that shows that although NSAIDs are useful in the short-term, their long-term use can actually lead to an increased experience of pain. My doctor, who, as I’ve mentioned, takes a holistic approach to health, which includes, but is not limited to,  medicine, homeopathy, nutrition, exercise, and physical therapy, also voiced concern regarding my use of NSAIDs and their long term impact on my digestive tract.  The whole team — my doctor, my physical therapist, and my chiropractor — all shared this concern.  So, under my doctor’s guidance, and with the encouragement of the team, I first cut my dosage of diclofenac from 150 mg/day to 100 mg/day and then to 50 mg/day.

After several months on that dose, I accidentally forgot to take my meds last Sunday night.  The team and I had been planning for me to discontinue diclofenac completely at about this time anyway, so I took that as my cue and haven’t had any type of anti-inflammatory or pain medication since Saturday.   Hence, the ice.

Kaplan’s theory, based on his clinical experience, is that after a long, pain-filled couple of months without NSAIDs, my body’s endorphin system will kick back in and the pain will go away (Kaplan 43).  Hence, the wrestling match.

It’s Wednesday.  I have only been without this medication for three days. My pain for the past two has been well above 5.  Let’s say it’s a 7.  Seven drains the battery much more quickly than 5 does.  It’s like having all your apps open, the wifi roaming to find a signal, bluetooth on, and the screen light on high.  I don’t last long.  Exhausted,  I try to sleep, but I can’t get comfortable.  The majority of my pain is in my right shoulder/upper arm and  my right hip,  but that pain likes to travel to my low back, my neck, my left elbow, my feet, my eyes, and anywhere else it can find a place to reside.  No sleeping position is comfortable.

Kaplan says that if your body doesn’t get enough rest, your experience of pain is greater. Yeah, I know.

So, I’m trying to look on the bright side.  I make my own work schedule.  I can lie down in the middle of the day if I feel like it.  I’m getting to see a lot more Jimmy Fallon than usual. And maybe, just maybe, this decision will eventually lead to less pain and a better quality of life.

That, my friends, is my prayer.

Psalm 103: 2-5

Praise the Lord, my soul,
    and forget not all his benefits—
who forgives all your sins
    and heals all your diseases,
who redeems your life from the pit
    and crowns you with love and compassion,
who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.