Category: illness

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.

~ 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.

Just add this to the pot

~ Kristin ~ 2 Comments

So, do you know what simmering does?  It cooks slowly and gently so as not to damage.

Yesterday, a lot of ingredients were tossed into my brain.  I was thinking about pain and illness.  I was wondering about healing. I encountered the idea of spiritual warfare.  I read about pride, identity,  and temptation.  All of these ingredients were sitting there in my brain, and I didn’t know what to do with them.

Often, the recipe is clear — knead, bake, slice, serve. But yesterday, I had no idea what I was ‘making’.  Probably because I wasn’t intended to ‘make’ anything at all.  I felt the nudge to put the pot on simmer and walk away.

Sometimes I do this in our house.  I have a lovely crock pot that I fill with a pale chunk of pork or chicken, a couple tablespoons of slimy olive oil, some sea salt and other dry pungent spices.  I turn the dial to ‘simmer’, and I walk away.  It’s lazy cooking, yes, but’s it’s pretty effective.  Those ingredients, which look less than appetizing at the start, start to simmer, and as they do, they give off a pleasing aroma that fills my house and greets my husband when he walks into the house after a long day.

So, yesterday, as I was taking in some thoughts that were less than pleasing — pain, illness, temptation, spiritual warfare, pride, sin — instead of tossing them all into the trash, I decided to allow them to simmer for a while.  I mean, it couldn’t hurt.

While they were simmering, I went to the gym and walked on the treadmill for a half an hour or so.  Then, I submersed myself in the warm bubbling waters of the jacuzzi.  I showered, dressed, then drove to meet with two students in a neighboring town.

I drove home, ate some dinner, watched some television, crocheted, read, and went to bed.  And the ideas were still simmering.  I didn’t open the pot to stir.  I didn’t turn the heat up or down.  I just let them cook slowly and gently.

This morning, the battalion met to continue in our study of Hosea. I think I was hoping that I would be able to open the crock pot and see that all the ingredients were ‘done’ simmering.  That didn’t happen.

Instead, as they continued to simmer, I observed this sisterhood that I have been plunked down into.  I watched as they cared for one another — observing a swollen toe, praying for an ailing husband, applauding successful surgeries, and joining in to sing together.

Today’s topic was the idea that we often wander from God because we don’t truly know Him — really know His character and appreciate His love for us.  We acknowledged together that we are “prone to leave the God we love,” and learned together that this is because we know of God, but we don’t fully know Him.

Yet, in spite of our wandering ways, God continuously pursues us.  He puts obstacles in our self-destructive paths so that we will turn around and wander back toward Him.  Sometimes when we are redirected in this way, we get close enough to see His face beaming with love for us — His beloved.  And if we can get our eyes off the distracting shiny objects long enough, we can look into His eyes and see ourselves reflected there.  And that, my friends, is when we get a glimpse at our identity.  Not our estimation of ourselves in relationship to our peers, but our true identity as children loved by God.

I think I’ll let that simmer a little longer.

“I have loved you with an everlasting love;

therefore I have continued my faithfulness to you.”

Jeremiah 31: 3

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.

It takes a team

~ Kristin ~ 1 Comment

One thread of this blog since its inception is my journey through healing.  In the summer of 2012, I noticed that my elbows hurt.  The first health professional I saw thought I had tennis elbow — even though I didn’t play tennis or do any other repetitive motion activity other than swiping my iPad. That fall I began to feel tired — reeeeeeeally tired.  As a full-time mom, teacher, school administrator, and basically busy person, I had no time to be tired.  I went to a second health professional who did some blood tests and told me I was fine.

Since I knew I wasn’t fine, I kept pushing and investigating until I landed in a rheumatology office where I was given the diagnosis — psoriatic arthritis.  By then I wasn’t just tired — I was achy and struggling with psoriasis, too. Over the next 18 months I was treated with a series of medications in an attempt to find the one that would allow me to feel the best with the least side effects. I also experimented with acupuncture, massage, and nutritional interventions. All the while, I was still working full time and preparing for a major move, my youngest daughter’s graduation from high school and my oldest daughter’s graduation from college.

Then we moved.  And, if you have been following this blog, you know I committed to some time of rest and recovery.

While resting and recovering, I saw new medical professionals who said I did NOT, in fact, have psoriatic arthritis, but probably fibromyalgia.  These doctors discontinued some of the meds I was on and suggested that I insert more exercise into my life including cardio (I was already walking and doing Pilates). I resisted the fibro diagnosis, got a gym membership, and started building my team.

Now, 3.5 years after my initial symptoms and 1.5 years after moving to Michigan, I am still on the path to healing, but I am not alone.  I have assembled quite a little network of professionals who are believing with me that my health can improve and, indeed, that my entire sense of well-being might be restored.  Let me introduce my team.

Rev. John Rathje, aka my dear husband, is chief executive in charge of encouragement.  From the beginning, he has believed my invisible symptoms are real, has accompanied me to appointments whenever I have asked, has heated flax seed pillows, purchased ice packs, rubbed sore muscles, and supported my couch sitting. He also makes sure to remind me not to push too hard or do too much.

Rev. William Gatz is chief executive in charge of intercession. Since the moment he heard of my diagnosis he has prayed daily for my complete recovery.  If you know Pastor Gatz, you know this is serious business. He is a leader in prayer and intercession, especially prayer related to healing.  He also recommended that I read How Can I ask God for Physical Healing, which challenged some of my thoughts and affirmed others.

Dr. Mary Greiner, D.O. and Integrative Medicine Specialist, is the hub of my medical team.  She spends a great amount of time listening to me.  She takes a varied approach that includes, but is not limited to, pharmacology, homeopathy, nutrition, physical therapy, and lifestyle. Most importantly she believes that I can experience a better quality of life than I have now and she is willing to walk with me until I get there.

Marcy Boughton, MS PT, is the physical therapy whisperer who is subtly coercing my body into healing itself. She has manipulated my skull, my spine, my organs, my limbs, and, I dare say, my mind. The woman is filled with the spirit of God — Biblical truth oozes from her as she applies her hands to my body.  It is really quite miraculous. I have never experienced anything like it. Once a week I spend an hour on her table and leave feeling energized and supported. Marcy recommended that I read Dr. Gary Kaplan’s Total Recovery which is reshaping the way I think about health and the human body.

Dr. Greg Peroff, DC, is the chiropractic support member of this team.  He continually reminds my sacroiliac joint of where it is supposed to hang out and keeps my head screwed on straight. Like the others, he is committed to my overall well-being and applauds me as I walk down this path.

Of course I have other players — my eye doctor who treats the ocular herpes that resulted from my time on biologic medicines, my former therapist who walked with me before and during my diagnosis and helped me begin to see that my pursuit of health is not merely medical, but also psychological and spiritual, and a great team of family and friends. Soon I will be recruiting an acupuncturist and a massage therapist to round out this crew.

When I write it all down it seems a little excessive and somewhat selfish to need so many people. That is, when I look at it with my natural mind. My natural mind wants to be self-sufficient and to soldier through any difficulty without the support of anyone else.  I want to kick butts and take names.

Good thing I also have the mind of Christ that reminds me that butt-kicking and name-taking contributed to me being in this position in the first place. The mind of Christ reminds me that God connects us with others for a variety of reasons. This team is supporting me, yes, and perhaps, in some way, I am also blessing them.

I didn’t choose the path of chronic illness, but I am choosing the path to wellness — body, soul, and spirit. I am turning away from thinking with my natural mind, and turning toward the mind of Christ. Moment by moment, I am turning.

I Corinthians 2:14, 16

14 The natural person does not accept the things of the Spirit of God, for they are folly to him, and he is not able to understand them because they are spiritually discerned…16 “For who has understood the mind of the Lord so as to instruct him?” But we have the mind of Christ.

Being Held

~ Kristin ~ Leave a comment

I’ve been putting a lot of things together over the past couple of weeks — connecting a lot of dots — writing things down in indelible marker — trying to nail these lessons home.  But, even as I type this, I know that these are lessons I am going to have to learn over and over again.

I’ve written so many sentences, paragraphs, and blog posts about my soldiering — how I’ve marched through battles, brandishing weapons, kicking butts and taking names.  I’ve confessed that my years in the battlefield of my own making have wreaked havoc on my body.  I’ve vowed to put down my weapons and rest in the palm of the hand of God.  Yet, I gaze longingly at my fatigues that are propped up over in the corner.  I long to get back in the game, to live the life of my former self.

I mean, wasn’t it great? The camaraderie with the troops — working side-by-side to tackle issues like failing students, families in crisis, and new programs for success? The daily soldiering — lesson planning, writing exams, reading essays, and teaching grammar? The little skirmishes — with students, with parents, with colleagues? The victory parades — parent/teacher conferences, faculty parties, graduation?

Yes, it was great.

So what went wrong?  Why couldn’t I hang in there like some who have been marching for forty years or more? Why did I have to take my honorable discharge so early?

Perhaps because there is work for me in the reserves? Could I be as effective as a reservist as I was while on active duty?  Could I use the same skill set? Could I meet with a different population this way?

I mean, let’s be honest, I’m certainly not ready to retire. I have ideas, opinions, and strategies formulating in my mind all day long. Yet, it’s obvious that I can no longer sustain active duty.  A few hours of interaction with students and I am ready to put my feet up.  Sometimes I sit down at 3:00pm and don’t get up again for the rest of the evening.

Last Thursday as I lie on the bed at the physical therapy office, I heard the therapist say, “Your body is kind of twisted in on itself, as though you were holding yourself together so that you could move forward.”  I was silent as I thought about that for a moment. Actually, I keep thinking about that one sentence.

Perhaps the reason I couldn’t sustain forty years of teaching is because I exhausted myself in just ten years by simultaneously attempting to hold myself together while kicking butts and taking names. And don’t I feel foolish for attempting to do what has already been done? I could never hold myself together anyway. Nor did I have to.  I am, after all, being held together in the palm of His hand.

Silly me.  Let me get out that Sharpie.

Colossians 1:16-17

all things have been created through him and for him.17 He is before all things, and in him all things hold together.

In good company

~ Kristin ~ Leave a comment

Guys, David had back pain!  Listen to this…”my back is filled with searing pain, there is no health in my body…” (Psalm 38:7).  Why is it that knowing someone else suffered like I do makes me feel a little better?  

Haven’t you been in that conversation?  Your friend starts describing her situation, “my son just won’t talk to me, he seems to spend all of his time in his room…” and you blurt out, “mine, too!”  Somehow knowing that you are not the only one experiencing what you are experiencing makes it seem a little less terrible.  

When I was a little girl my parents separated and then divorced.  It was the 1970s and divorce wasn’t as common, at least in my small town, as it is now.  I felt alone and so broken.  My poor teachers, parents, and friends.  I was such a crier anyway, and this really unleashed the tears.  I cried and cried and cried.  For years. It’s rather embarrassing to think about, actually.  I am a very messy crier, and, especially in middle school, I didn’t really care where I was crying.  It was pretty ugly.  

But God ‘stored up those tears in a bottle’ (Psalm 56:8).  Every single tear.  Kids, I’ve got a whole cellar full of bottles.  They are well-aged.  And mellowed.  And every once in a while I get to open a bottle and serve it to someone else.  It happens at unexpected times.  A student comes in between classes and confides, “Mrs. Rathje, my dad moved out last night…” Or a friend calls and says, “I don’t think I have any options left…” Their tears spill out.  I pull out the tissues and I open a bottle from my cellar.  My tears of anger and hurt and betrayal have mellowed and transformed into a balm of comfort. Through some miracle of God I am able to “comfort others with the comfort I have received from God” (2 Corinthians 1:4).  

Recently, a friend served me from her cellar.  When I was in the process of being diagnosed, I was confused and anxious.  She kept a bottle at her desk and willingly poured out the balm in small doses whenever I needed a little comfort. 

You all have your stories, I am sure of how you have served and been served from the storehouse of the tears of others.  Just yesterday, after I posted my whiny, complainy entry, a friend from my past sent me a message from her bottle.  It was encouraging, and strengthening. 

I don’t like being a whining, complaining drain on my friends and family.  Neither do you. But sometimes, guys, we hurt.  I am trying to learn how to be honest about my hurt without dwelling on it or becoming a burden to others.  I feel it is a delicate line. 

So, in my quest for truth, I go to God’s Word where he says, “Carry each other’s burdens, and in this way you fulfill the law of Christ” (Galatians 6:2).  You can’t help me carry it unless you know I have it.  I can’t carry yours unless you allow me to see it. We’ve all got burdens.  Even David.  

I like to think that his Psalms are poured out from his bottles. I know I have been comforted with the comfort that he received from God. 

 

 

 

On ice

~ Kristin ~ 1 Comment

How do you filter through all the information that you are confronted with each week? I am on overload.  Let’s just look at one segment of my life and the messages I have had to decipher, filter, and interpret all week.  My health. 

On Wednesday I saw a my new rheumatologist at the U of M.  I was anticipating that she would say, “Yup, looks like you have psoriatic arthritis and you should continue with the treatment you have been using.”  That’s what my rheumatologist in St. Louis said would happen.  It didn’t go that way. 

Instead, she (and her superior) said that I probably don’t have psoriatic arthritis, but more likely fibromyalgia. I should probably discontinue the biologic medication I have been taking and do more exercise.  In fact, do 20 minutes on the elliptical each day before I go on the three-mile walk that I have been doing. (I did mention, by the way, that fatigue is my most prominent symptom, followed by joint pain, and then psoriasis.) 

So, what do I do with that?  The doctor who has been treating me for 18 months says psoriatic arthritis, moderate exercise, prescription NSAIDs, and biologics.  The doc who has known me for twenty minutes says fibromyalgia, fewer meds, more exercise.  

Well, as is my way, I got angry.  I don’t think I have fibromyalgia.  It’s true, I don’t really fit any diagnosis cleanly, but most people with autoimmune disease do not. I don’t look sick at all.  Many people with autoimmune disease do not. I felt a bit like a hypochondriac. I felt dismissed.  I fussed and fumed to my husband and my daughter into the next day. 

But, I agreed that since I am not working at the moment, and I have some time to experiment, I would try discontinuing one medication and adding more exercise. Let’s just see what happens.

 On Thursday I did twenty minutes on the elliptical and went for a three mile walk.  On Friday, I toured a fitness center and swam!  I fell in love and decided I would get a membership because I can do Pilates, yoga, swim, and use weights and cardio machines.  Saturday we sat on bleachers and watched a volleyball game and then stood while we ate burgers with some friends. After that, I went for my typical three mile walk.  

I woke up Sunday  in pain. I struggled to stand through the praise portion of worship because of the amount of pain in my SI joint.  I came home and rested. Yes, I had to rest after church.  Then, I thought a walk might help with the pain.  Wrong.  It got worse.  I spent the rest of the evening on ice.  I woke up this morning, made breakfast for my family, then went right back to the ice.

I would be taking an injection today if I had not agreed to discontinue my biologics.  But I am going to follow the plan.   However, in order to follow the plan, I have to get this pain under control.  So, I am trying to get in to see a chiropractor tomorrow.  Perhaps he can realign my SI and reduce my pain so that I can do more exercise.  

This is a lot of information, isn’t it?  You don’t really want to hear about all my medical stuff, do you?  It’s consuming.  And it’s only one segment of my life.  I have many other things I would like to be spending my time thinking about.  

But today, I am on the couch, on ice.  

I am trying to understand what God has for me in this next chapter of my life.  I really don’t want to spend it on the couch, or in doctors’ offices, or focusing on taking care of myself.  I am trying to be open.  I really wish this illness was in my head.  I really wish that I could just do more exercise, think positive thoughts, and get back to my old self. I don’t really think that is going to work. 

I am frustrated, but I am holding on to the hope that my new self, in this next chapter, whether in pain or not, will be a self that turns her eyes to God, that listens to His truth, and that accepts whatever He has for me. 

And in the mean time, I’ll be sitting here on ice. 

Two kinds of battle

~ Kristin ~ 1 Comment

It’s funny, I just reread my post from yesterday, about doing physical battle against illness.  I got to the scripture verse and practically laughed out loud. “Though an army besiege me, my heart will not fear; though a war break out against me, even then will I be confident.” 

I am laughing at myself because I was thinking for a minute that the physical battle was the one I needed to be focused on.  Oh, silly me.  I forget so easily.  I stayed lost in that physical battle most of the day.  I am still not feeling great, and I had to see my new rheumatologist today, too. I was poked, prodded, examined, and x-rayed.   But that was the easy part. 

The tougher part was the spiritual/emotional battle that has been subtly building over the last several days.  There’s nothing extraordinary going on, really.  It’s just that, like everyone else who lives and breathes, I have a steady stream of stuff coming at me.  Stuff like daily details, family relationships, health information, … just stuff.  Not one piece is overwhelming on its own.  Especially not if I carefully lift each item up and release it.  But if I hang on to stuff, plot and plan and maneuver it just so, try to own it, try to solve it…then it owns me.  It’s psychological warfare.  It’s covert. I don’t even know I’m being attacked until I’ve got myself in knots.  

The first symptom is usually sarcasm.  Little snide comments start slipping out of my mouth.  At first I laugh them off, but then, I notice that they are actually painful barbs directed mostly at those closest to me.  But this one symptom doesn’t usually get my full attention.  

I usually have to progress to midnight wakefulness and fevered internet searching, trying to find the answers to my problems through information, or services, or a job (oy, vey!).  It happened again tonight. After sending several emails and searching numerous medical websites,  I almost filled out an online form to receive job notifications for Pete’s sake!  Like a job, doing more, will actually make me feel better! 

Thankfully, I woke up and closed out the screen and turned to my blog.  “Ho, hum, if I can’t sleep anyway, I might as well blog…” I read what I wrote yesterday, then I got to the scripture…”Though an army besiege me, my heart will not fear; though a war break out against me, even then will I be confident.” 

Oh, yeah, that’s who I am. I am confident. I am the girl whose confirmation verse is Joshua 1:9 “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord, your God, will be with you wherever you go.”  I am the fighter with no earrings and a ponytail who has put on the breastplate of righteousness, the helmet of salvation, the sandals of peace, and the belt of truth.  I am carrying the sword of the Spirit.

Come at me. 

Emotional/spiritual warfare?  You are nothing. I’m not afraid of you.  The Lord, my God, is with me wherever I go…and He has promised to “keep in perfect peace those whose minds are steadfast, because they trust in [Him]” (Isaiah 26:3).  I trust Him. 

That is all.  Goodnight. 

 

The battle is on

~ Kristin ~ Leave a comment

“Autoimmune diseases affect approximately 8% of the population, 78% of whom are women” (US Center for Disease Control and Prevention).  Among the autoimmune diseases I’ve heard of are rheumatoid arthritis, psoriatic arthritis, diabetes, celiac disease, lupus, Sjogren’s syndrome, and more.  No one is really sure what causes them.  I have a genetic marker that is often linked with the type of disease that I have. Some people believe the diseases have links to GMOs.  The CDC suggests that they may be linked to previous infection. 

Whatever the case, autoimmune diseases are a malfunction of the little soldiers in our bodies that fight disease.  They are a bit trigger happy, you might say.  They attack when there is nothing to attack.  They are always running around fighting something in our bodies, even when there is nothing to fight.  In my body, they gather around my joints, in my skin, and in my eyes.  They gather, they shout, they fire, they fight!  

You may have noticed when you are sick, and these little soldiers are fighting their hardest, you have to go to bed and rest.  They wear you out!  You feel achey all over, you have a fever, a sore throat, you feel blah.  That is what autoimmune disease feels like most days.  

One way to treat an autoimmune disease is to take immunosuppressants — Enbrel, Humira, Remicade, etc.  These drugs tell the little fighting soldiers in your body to “be ‘at ease’, the infection you are imagining is not really an infection.  It’s a hallucination, so calm down.”  That is all well and good until there is an actual infection.  The fighting soldiers are ‘at ease’ according to their orders, so little enemies can infiltrate the system virtually undetected. 

Ladies and gentlemen, I have been infiltrated.  Last week, my dear husband had a minor cold — a little sniffle here, a little sneezing there.  I felt great.  I washed the sheets.  I washed my hands.  I kept my distance.  But, some of those little enemies abandoned him and scurried over to me.  They hid for a couple of days, scoping out the opposition.  But they could see that my soldiers were inside their tents, under orders to “be at ease”.  They decided it was safe to ‘be fruitful and multiply’.  

So, I feel a little like I’ve been hit by a truck.  

Not to worry.  Those enemies underestimated the host body.   I am not one to be messed with.  I dragged myself out of bed this morning, took some Emergen-C, some Dayquil, drank a kale-hemp-berry-almond-flax-chia smoothie, made some strong black tea, and looked those little buggers in the eyes.  “Come at me.”  

I immediately felt a scurrying and fleeing.  These little infiltrators now realize that I have had serious disease fighting training in the school of motherhood and the advanced training of teaching in a high school (with juniors — ew). Besides, I have God on my side.  I am assured a victory.  I am not going to lie down and be beaten.  I have taken out my earrings, pulled my hair back, and I am ready.  

I bet even you can hear them fleeing.  

Psalm 27:3

Though an army besiege me, I will not fear; 

though war break out against me, even then I will be confident.