Category: autoimmune disease

Danger! Danger! Danger!

~ Kristin ~ 1 Comment

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…

~ Kristin ~ 2 Comments

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 (here, here, here).  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. 8 Three times I pleaded with the Lord to take it away from me. 9 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

~ Kristin ~ 2 Comments

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—
3 who forgives all your sins
    and heals all your diseases,
4 who redeems your life from the pit
    and crowns you with love and compassion,
5 who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.

 

 

A Juror and some witnesses

~ Kristin ~ Leave a comment

So I’m at home taking a break between two cultural geography classes for which I was asked to share my experience of serving on a federal jury for a case in which Monsanto was awarded one billion, yes billion, dollars.  The class is examining food security and has been exploring the impact of genetic modifications on our food supply.

You know how these things happen — the instructor was having a casual conversation with my husband who off-handedly mentioned that I had served on this case and the rest is history.

In preparation for meeting with these two classes, I reviewed a couple articles regarding the case. Here’s one. I also watched a video that the instructor had assigned her students to watch. Here’s the video. As I read and watched, I did some reflecting and realized that while I walked into the trial without a lot of knowledge or bias on the topic, I clearly have some now.  I was praying that I wouldn’t let too much of that bias show through to the students, but I am afraid I did.

I enjoyed the conversation with this class of about twenty, but I left feeling a little icky.  Did I say anything that wasn’t true? No.  But did I maintain objectivity or put the best construction on the information that I have? No.

How do I know this?  Because before I started to write today, I took a short detour to read my devotion. Ugh.  I winced when I read the words “no human being can tame the tongue. It is a restless evil full of deadly poison.” I get so carried away when I stand in front of a classroom.  I guess it’s my inner showman or my attention-seeking inner middle child, but I just get super chatty when I have an audience of students. I don’t always filter everything that comes out of my mouth. Ok, ok, I may be over dramatizing — I mean, I didn’t kill anyone.  But I did season my words with cynicism and judgment.

I will acknowledge that judgment has its place in discussions of corporate greed and public health, however, I would feel a little better if I had built a discussion around evidence rather than emotion.

And, as God has designed it, I have a chance to try again — in just over an hour.  So, what will I do the same? What will I do differently?

  • I will still share that I have no regrets about awarding Monsanto the victory in this case.  The defendant, Pioneer Seed Company, knowingly and blatantly used proprietary information — we saw evidence of that in internal emails, videotaped interviews, and genetic data.
  • I will again state the fact that although I knew very little about Monsanto or genetically modified organisms prior to the 2012 trial, I am much more aware now. While I was truthfully unbiased going into the trial, I clearly have some strongly held opinions now.
  • I will share my suspicion that the dramatic increase in autoimmune diseases like the one that I am living with is correlated with the increased presence of GMOs in our food supply, but this time I will cite several studies by the National Institute of Health instead of just saying ‘it’s my suspicion’.  I will also reiterate that although diet is a factor in disease, so are other factors such as environment and genetics.
  • Instead of emphasizing the huge profits that Monsanto makes by dominating the GMO industry or its ironic involvement in both plant-killing endeavors (Round-up, etc.) and ‘fighting the world’s food shortage’, I will challenge the students to ask their own questions and find their own answers.  Who benefits from this science? Are companies like Monsanto really solving the world’s food crisis? Is there actually a food shortage or rather a disproportionate food distribution?  What long-term effects does genetic modification have on our food supply, our health, our economy, our environment?
  • And, I will again give them the permission and the charge to do something! More than anything I want to convey the idea to students that they are change-agents.  They are not prisoners of circumstance.  They have been gifted with intellect and opportunity to step into science, industry, and health in ways that have impact.
  • Further, I will encourage them to inspire change through their spending choices.  We all agreed this morning that it costs more financially to eat healthfully, at least in the short-term.  However, we pay more in the long-term — health-wise, financially, environmentally, and otherwise.  Their dollars have the collective power to inspire change.

Yes, if I am able to do all of that, I will walk away from this afternoon’s class feeling less-than-icky. I will feel like my time was well-spent. It’s gonna be a challenge to keep my tongue in check, but I owe it to these kids who are looking for footsteps to follow in.

Hebrews 12:1

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,

Marvel with me

~ Kristin ~ 3 Comments

No wallowing today. Period. I declare this a day of marvel.  Want to marvel with me?

First, I got out of bed after only 40 minutes of wakefulness today!  Woo-hoo!  And what did I find after I had maneuvered from horizontal to vertical?  A fresh blanket of snow reflecting a beautiful sunny day.

Second, having gone to bed without a lesson prepared for my 1pm class today, I woke to purposefulness, started with the end in mind, and prepared a process-oriented lesson that will allow my students some practice in critical analysis.

Third, while I was preparing this lesson, I heard from a couple of former students. One young man who I spent several years trying to convince of his giftedness shared a link to his recent appearance on an AOL sponsored webcast in which he brilliantly articulated the power of technology as a platform for young black voices (Here’s his link.); similarly a  young woman who was in my first high school class in Missouri shared her Christian maturity via social media. I get to know these brilliant young people!

Fourth, I found a forgotten gift card I received for Christmas and purchased two new pillows online.

Fifth, I discovered that a savings bond that we received as a wedding gift over twenty-five years ago will more than cover the cost of passports for me and my husband.

Six, I was offered a position teaching composition to high school students in a summer program at the University of Michigan.

Seven, I get to teach college students in just a couple of hours.

Eight, I get to work with two middle school students later today.

Nine, when I sat down to write, I first read a blog post by another former student. She reminded me that although I am prone to wander, my wandering never satisfies. Here’s her blog.

I read my devotion this morning and it reminded me that just as I have been blessed with following in the footsteps of many faithful believers, I am granted an opportunity to leave some footprints of my own.  I’d hate to spend all of those footprints on the path to wallowing.  So, I’m taking the opportunity, once again, to turn.

My life is rich. I am blessed. I’m just going to marvel at that today. Hope you’ll join me.

Psalm 71:17

Since my youth, God, you have taught me, and to this day I declare your marvelous deeds.

Beloved, regardless of wallowing

~ Kristin

This must be anti-wallowing week!  What is it about February that induces the blues like no other month on the calendar? Yes, it’s cold.  Yes, it’s gray.  But, come on, it’s only 28 29 days.  How bad can it be?

Well, for an experienced wallower, it can be pretty bad, can’t it?

And I’ll admit, I’ve been a wallower this morning.  I woke around 8am.  I always feel the worst right when I wake up.  Every joint and muscle aches, and I feel somehow attached to my bed.  It typically takes me 30-60 minutes to convince myself that I will feel better once I get out from between the sheets.  Today it took closer to 90.  I didn’t have to stay in bed, but I chose to lie there, read Facebook, Twitter, and email, and take my turn on a dozen or more games of Words With Friends.

That, my friends, is professional-level wallowing.

I am not saying that to judge anyone out there with chronic illness — I know it’s rough, and I know that sometimes bed is where you need to be — I am just saying that for me, today, my first 90 minutes were spent wallowing.

It sounded something like this: “I don’t feel good. I ache. I’m tired. I’ll just lie here a few more minutes. I don’t have anywhere to go this morning anyway. My first appointment is at 3.  I need the rest. I’ll get up soon.”

Thank goodness I have a bladder. It recognized the situation and fired off a red alert.  “Emergency! Emergency! You need to get out of bed now!!”  I can always count on my bladder.  It forces me to pause in my wallowing.

Once I had taken care of the first order of business, I made my smoothie and my tea, and I sat down to my work for the day.  I was able to help a student on a couple of documents she needs to submit for a class and interact with a few friends on Facebook before I got a notification from a friend reminding me that my husband had given the message today at Concordia’s chapel service.

And then I was tempted to resume wallowing. “Seriously, Kristin, you couldn’t get yourself up and dressed in time for a 10:30 chapel service? What’s the matter with you?  You aren’t that sick!  Stop wallowing!”  You got it, my wallowing was perpetuating more wallowing!

And right then I had a choice — go down that path, or turn.

Today, I turned. If you’ve been reading this blog for any amount of time, you will know that I was once again ‘shocked’ that my Bible study for today directly applied to this situation. The words “I’m sorry” jumped right off the page at me.  Of course there were many other words, but I think “I’m sorry” was bolded and in 24pt font.  And what am I sorry for?

I’m sorry that I have forgotten to be content in all circumstances.  I’m sorry that I have forgotten the blessing of this next chapter — yes, I am not the person I once was, but that gives me an opportunity to not be the person I once was. You know what I mean?

I am no longer functioning at my best when I leap out of bed at 5:30am to conquer the world and everyone in it for fourteen or more hours.  I am now at my best when I amble into my day at a slower pace, when I notice who is posting what on Facebook, when I am aware of what is happening in the world, when I can offer encouraging words to a graduate student I have never met face to face, when I can sit next to my dog, read a devotion, and reflect on the thoughts I am having and the way I am feeling.

I didn’t take the time for any of that in previous chapters. I was busy trying to achieve, trying to manage it all, trying to be perfect.

I needed to pause from my wallowing this morning to remember that I was not meant to be “be-perfect”; I was meant to be “beloved”.

I am beloved even when I wallow. I am beloved when I stop wallowing.  Nothing I do can change the fact that I am beloved.

Hebrews 13:5

be content with what you have, because God has said, “Never will I leave you; never will I forsake you.”

Low batt. p.3

~ Kristin ~ Leave a comment

I know, I know…I started this whole thing because I thought the “Spoon Theory” was not readily accessible to those outside the world of chronic illness.  I remarked that it was “a lot to read” and now I’m on my third day of posting about my alternative metaphor.  *sigh*

If you’re sick of it by now, just close this window and move on with your day, because I am going to go ahead and examine a feature that my iPhone recently started offering me.  I’ve mentioned that my phone is not holding a charge very well (nor am I for that matter), so I frequently get a prompt to switch to “low power mode”.  This function is quite handy.  I might be out tutoring in some nearby library, when I check my texts in between students, and I realize that my phone, which the last time I checked had 80% battery, is suddenly down to 37%.  A dialog box pops up on my screen offering me the option of switching to “low power mode”.  Knowing that I won’t be home for another couple of hours, I readily accept my phone’s offer.  “Why, yes, I will switch to lower power mode, dear iPhone, thank you for asking.”

In fact, I am kind of wondering why my smart phone isn’t always in “low power mode”.  I mean, isn’t it smart-enough by now that it is able to do everything I need it to do while remaining in “low power mode”?

That is, after all, what I have been learning to do.

I mean, my battery regularly plummets from 80% down to 37% with very little forewarning.  So, I have found ways to conserve energy — to utilize my “low power mode”.  For instance, when I am teaching, I may start standing in the front of the room, but it won’t be long before I sit right among my students and lead a discussion from “among the ranks”.  We could say it’s brilliant teaching strategy, or just call it what it is — “low power mode”.

My “low power mode” extends beyond the classroom.  I’ve found a variety of ways to conserve energy so that I have it for all the things that are important to me.

  • I cook in large quantities (when I cook, which isn’t often) so that we can freeze portions for days that I’m spending my energy on something else.
  • I fold laundry while sitting in front of the television, and I take breaks if my arms get tired.
  • I take smaller, more frequent shopping trips so that I don’t often have to put away a whole kitchen’s worth of groceries at one time.
  • I also clean in spurts — wipe down the bathroom before I jump in the shower, vacuum right before company comes, and change the sheets when my husband is around to help re-make the bed.
  • My Christmas shopping took me quite a while this past year because I purchased one or two items at a time, often online while sitting on my couch.

These strategies allow an extended battery life.  Because I run on “low power mode”  I can blog, teach, and join friends for dinner all in one day.  I still may need to pause mid-afternoon and plug in for an hour or two of re-charging, but ultimately I can participate in the things that are important to me.

I know this is the strategy that works best for me, and yet, from time to time, I keep all the apps open, the screen up to full brightness, and the wifi searching for a signal. Sometimes I do this out of forgetfulness; other times, I’m just willingly taking the risk. Either way, I end up shutting down in the middle of something, wishing that I’d slowed down or plugged in sooner.

And then I have another chance to learn my lesson — another chance to function at “lower power mode” from the start; my iPhone should go and do likewise.

2 Corinthians 12:9

 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.

Low batt., pt. 2

~ Kristin ~ 2 Comments

What good is a metaphor if you don’t extend it?

Have you ever had a phone that just won’t hold a charge?  I have one right now and it’s like a symbol for my life.  It used to hold a charge for quite a while — even if I was using seventeen apps all at the same time!  I could quickly shift from email to Words with Friends to Facebook to texting to Twitter to Google without draining the battery.  Not now.  Recently my phone battery has been draining quite quickly.  I’m constantly closing apps, dimming my brightness, turning off the wifi, and trying to find a charger.

And that, in a nutshell, is my life, ladies and gentlemen. Not too long ago, my own internal battery was charged almost all the time to 90-100%  I could jump out of bed at 5:25 am, shower, dress, put dinner in the crock pot, start a load of laundry, drop the kids at school, teach all day, attend a sporting event or run 4-5 miles, then go home, serve dinner, clean up, finish laundry, grade papers, and maybe even complete a few other tasks around the house.  Sure, by Friday, my battery was down to about 30%, but an early bedtime, a cup of coffee, and I was out the door running on Saturday morning.  Right back at it.

Now, on a really good day, I start at 85%.  Three to five activities will take me right back to zero, so I’ve got to choose wisely.  I can either go to the gym or go grocery shopping — not both.  I can teach one class and meet with three students on Wednesdays, but I better be ready to sleep in on Thursday.  If I want to have enough energy to go out to dinner at night, I had better sit on the couch recharging for an hour or two in the afternoon.

Depending on how low my battery is running, I may have to shut down some apps in order to have enough energy for the task at hand.  For instance, if I have to drive a long distance, I can’t necessarily also have a discussion at the same time.  If I have been grading papers and you stop to say hi to me in the library, I might not be able to access your name right away.  Yesterday, I started some eggs boiling, but started blogging before setting a timer.  My ‘egg boiling’ app totally shut off so that I could use my blogging app.  When I heard whistling coming from the kitchen, it never dawned on me that I might have some control over it.  I had totally shut down that part of my brain. It took eggs exploding all over my kitchen to remind me that I had started the process in the first place.

It’s Wednesday.  Three days after my return from the whirlwind trip that drained my whole battery plus a supplementary external battery.  I spent one whole day plugged into the wall.  Another day at half-batt, with frequent trips to the charging station.  For two days now I have been functioning at about 70%.  I’m returning to my responsibilities and trying not to do too much.  It’ll be a quick trip back to 0% if I’m not careful.

It’s been three and a half years with this less than optimal battery.  I’m trying to learn how to function at this new capacity, but soldiers aren’t used to limits.  I keep trying to report in for new orders, but the orders remain the same.

“Be still. Rest. I’ve got you in the palm of my hand.”

Matthew 11:28-30

“Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Low batt.

~ Kristin ~ 2 Comments

In 2003, Christine Miserandino explained chronic illness to a friend in terms that are now widely referred to as The Spoon Theory, see it here.  Since that time, people like me, who have chronic illness, have been thankful to have a way to convey tangibly what it feels like to be totally depleted, or “out of spoons”.

We were away this past weekend at a basketball tournament in Chicago, and, having used all of my spoons, I shared the analogy with my husband.  I told the story, as best I could remember it, and he said, “Hm. I like the analogy.  I get how spoons can carry, or hold, energy.”  Yesterday I was talking with my daughter after almost two days of trying to replenish my store of spoons.  She was trying to understand how a whirlwind trip to Chicago took me out of commission for most of two days.  My husband prompted me to share the spoon theory with her.  I did.  She said, “so can you store up spoons in advance?” I replied, “No.  You can loan some out from the future, but you’ve got to pay them back.  That’s what I’m doing now.”

So, if you got this far  without clicking on the link above, you are probably scratching your head and trying to decide whether or not you are going to continue reading this cryptic post or if you are just going to close the window.  If you clicked and saw the page-long “spoon theory” you might have said, “Well, I’m not gonna read all that and this blog post.” I know.  That’s why in the past three or four years I have only shared the spoon theory a half a dozen times.  It’s an effective analogy, yes.  But it takes some explaining.

So, I was going through my motions this morning thinking to myself, “is there a more accessible way to convey how I am feeling?” I mean, people with chronic invisible illness find themselves in this position rather often.  People look at us and think, “She looks alright to me!” They don’t understand when we “can’t” stay to watch the second round of games in the tournament because we have to go sleep.  They don’t understand why we make plans always “tentatively” because we might feel like crap on that day. They wonder why we didn’t make it to Bible study in the morning, but we were able to teach a class in the afternoon.

Maybe we could think of it in terms of limited battery life. We all carry devices around with us wherever we go, don’t we?  They all rely on batteries.  To make sure that our devices are functional all day long, we plug them in every night at our bedside.  Some of us have chargers in our cars.  In many public places — airports, malls, libraries –we can now find charging stations.  We push our devices to their limits.  They get depleted; we have to plug them back in or they will be rendered useless.

Most people have internal “batteries” that can keep them running for twelve to fourteen hours with a minimal recharge sometime during the day.  They might be up and out the door before seven, sipping a cuppa joe on the way to work.  They might need a brief pause around 10 o’clock and some kind of a lunch break, but then they are good to go for the rest of the day.  They might even have enough battery life left to get dinner with friends or attend a play or a concert in the evening. In fact, they can keep up this pace day after day and even get away on the weekend occasionally without fully depleting their battery life.

Not me.  Not any of us with chronic illness.  Our batteries have been rendered less effective.  I might have up to eight hours of battery life per day.  If I start off at 7 am and don’t take a break, I will almost certainly be done and in my pajamas at 3 pm.  So, I don’t usually function that way.  I use 20% of my battery, then I sit down and try to ‘re-charge’.  I may get 5-10% back if I sit down, put my feet up, have a cup of tea, or close my eyes.  In that way, I s-t-r-e-t-c-h eight hours of battery life into twelve to fourteen hours of wakefulness, if not usefulness.

Occasionally, I throw all caution to the wind and decide that I am going to take a chance, push my battery to the limits, attend a basketball tournament out of state, and suffer the consequences.  That’s what I did this last weekend.  I had already had a pretty busy week — I had tutored twelve hours, taught the first two classes of the semester, arranged for doggy care, done laundry, tidied the house, purchased new jeans, and packed — before we woke at 5:30am to prepare for a journey to Chicago that would begin at 7am.  We arrived in Chicago around 11am CST, found the gym, got some lunch, then watched two basketball games.  Of course we “sat” at the top of the student section, so, because they stood for the whole two games, we stood for the whole two games.  All of this was a physical drain on my batteries.  And then there was the emotional drain.  All emotion drains battery life — positive and negative.  While at this tournament, I saw many former students and some former colleagues.  There was so much hugging and smiling!  I loved it, but it drained me.  By the time we headed back to the hotel at 5pm, I was done.  I put on my pajamas, crawled in bed, and began to read student papers.  (Yes, I realize that I said I was done and then I continued to do more — I’m telling you, I threw caution to the wind!) My husband and the others went out to get food.  When he got back, I had barely enough energy to chew.  I ate my dinner, then fell asleep before one episode of “Modern Family” could play out.

Then I slept for TWELVE HOURS.

We got up at 8:30am, grabbed a quick breakfast and headed back to the gym for more reunions, more hugging, more standing, more yelling, and more cheering — four games worth!  Then, at 9:30pm, we started the trek home. Since my husband was driving the van following two charter busses full of students, I wanted to stay awake to keep him awake and alert.  So, we drank caffeine at 10pm and chugged along.  It was like I had purchased an external battery pack. I was wide awake on purpose.  We blared music and sang.  We talked and laughed.  Finally, at 2:15am, we arrived home.  Of course I couldn’t go straight to sleep. I had to run out that external battery, which was, of course, disposable, not renewable.

I found that out halfway through my sleep, if you can call it that.  Having depleted all of my own battery, and the external battery, my body didn’t even have enough energy to sleep.  It started to scream from the inside out — a burning sensation filled my gut, my joints ached.  No position was comfortable.  I thought I would have to run to the bathroom to be sick.

Have you ever run your phone battery down so low that the phone actually shuts off? When you first plug it in, you get that image of a battery with a thin red line showing the depravity of life you have allowed your phone to deplete to? Guys, I had a screaming red line.

For all of Sunday I whimpered, whined, and convalesced while my husband, dear man that he is, carried my charge cord around and kept plugging it in — he brought me scrambled eggs and toast, which I at first couldn’t even eat; he ran me an epsom salt bath, which I gladly soaked in for an hour; he brought me tea, and water, and ice; he watched a movie with me; he endured an emotional meltdown; he encouraged me to go to bed at 7:30pm.

Then I slept for TWELVE HOURS. AGAIN.

It’s now Tuesday morning, and I’m pretty sure my battery is at about 70%.  I’m gonna go amble off to the gym, hobble onto the treadmill for a few minutes, then sit in the jacuzzi.  After that ‘workout’, I will meet with three students and prepare for tomorrow’s class.  I hope I still have 15-20% left at 7:30pm so that I can sit in on a board meeting conference call.

But if not, I’ll just have to crawl into bed and sleep some more.  That’s the price of throwing caution to the wind when you have limited battery life.

Isaiah 40:29

He gives strength to the weary and increases the power of the weak.

Let it simmer

~ Kristin ~ 1 Comment

So today is a ‘let it simmer’ kind of day.  You know what I mean?

I rolled out of bed rather reluctantly, muttering under my breath something about, “I am so sick and tired of being sick and tired…” I made my smoothie and my tea.  I got in the car and drove to the physical therapist.  When she asked me how I was doing, I admitted that I was feeling frustrated, defeated, and maybe even hopeless.

In her gentle physical therapy whisperer way, she put her hands on me, played an audio recording that spoke directly to my need, and spoke directly to my body, soul, and spirit.

Her words, and the words on the recording, reminded me that I had just celebrated in this blog yesterday the fact that I have been blessed by this illness. Blessed to pause.  Blessed to process.  And, as I see in the first paragraph I wrote above, I have been blessed with a home,  a rather comfortable bed,  tea,  the luxury of a smoothie every morning,  a vehicle, and the privilege of going to physical therapy once a week.

And not just any physical therapy — a physical therapy session wherein my therapist speaks Biblical words of truth into my life.

And it’s not oppressive. Or preachy.  Or false.  It is true.

How do I know it’s true?  Because as I am lying on the table, feeling her hands on my head, hearing her utter simple words of truth, I feel tears — soft, quiet, tears — dripping down my face.

She’s known me for two months, yet God’s spirit inhabiting her could see the need in my spirit and speak directly to me.  I don’t even remember what she said to tell you the truth.  All I know is that in those moments on that table I was reminded that He loves me, He pursues me, and He will heal me.

Yeah, I’m just gonna let that simmer for a bit today.

Psalm 107:43

Let the one who is wise heed these things
    and ponder the loving deeds of the Lord.