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.

 

 

 

 

 

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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.”

Just a little Crabby

I’ve been a little crabby lately.  I’m not new to this experience. In fact, my high school senior class voted me ‘moodiest’.  Yeah, nice of them; I know.

When I was a child, I was often scolded for crying too much, laughing too loud, and pouting too long.  I felt things — excessively.   I stomped, I slammed, I wailed, I jumped up and down, I yelled, and I screamed.

Most of these emotions were the response to the every day experiences of a kid — if my brothers picked on me or I didn’t get my way, I often cried to my mother, wailing about the injustices of life. If I got a good grade or a new pair of jeans, I likely beamed from ear to ear and informed everyone in my immediate vicinity.  If something was funny — I laughed. Loudly.  (I think my laugh will have its own blog post one day; I’m not sure I can contain it in one little sentence or paragraph.)

Anyway, early on I established myself as an emoter.  As time went by, I learned that not everyone is fond of such demonstrations of feelings, so I tried to contain them.  Really, I did.  I tried to bridle my tongue.  I tried to put the best construction on everything.  I tried to look at the bright side.  And guys, I have succeeded from time to time. I have; ask anyone!

But when the rubber hits the road, I am what I am.  And sometimes, friends, it ain’t pretty.

In fact, over the years, as I’ve mentioned in this blog, I have engaged in therapy to work through my feelings about all the events of life.  I wasn’t just sitting at home sipping tea when the idea popped into my head, “You know, I think I will go see a counselor and examine my feelings.”  No, it looked more like sobbing into a pillow feeling hopeless, yelling irrationally at a family member, or locking myself in the bathroom to rearrange a cupboard when we really needed to get in the car because we were expected at a social engagement.  I’ve gone to therapy because my feelings and my inability to appropriately process them mandated a change.

During a couple of those periods, my health care professionals suggested that I try taking anti-depressants.  Indeed, many members of my family have struggled with depression over the generations; I am a bit pre-disposed.  And, to be honest, these medications served their purpose for a period of time.  The first time, I only used them for about a year, if I recall.  Recently, I have been taking a low-dose of zoloft for about seven years. I like to think that this medication has dialed my emotions back a little and has allowed me to manage some very difficult periods.

Some people don’t like to talk about such things, but I think we’ve already established here that very few topics are off limits for me.  I don’t think taking zoloft is any more taboo than taking amoxicillin. They are both pharmaceuticals that work with the chemistry of the body to affect change. I’ve taken plenty of amoxicillin in my day; I’ve also taken zoloft.

On my current quest toward wellness, I have fallen out of love with traditional medicine, particularly the pharmaceutical industry.  (That’s a topic for another blog post.) I have found the most benefit for my personal maladies in less conventional methods –dietary choices, exercise such as yoga, pilates, and swimming, visceral physical therapy, nutritional supplements, and homeopathic remedies.   I took the risk of eliminating my biologic and anti-inflammatory medications at my doctor’s suggestion and found that my symptoms, after a period of adjustment, were no worse without them.   So together we decided that I would take the next step and gradually and cautiously reduce my anti-depressant dosage.

When I first eliminated my anti-inflammatory medication, I was pretty miserable.  My body, used to having that drug, rebelled when it was deprived.  My pain levels increased predictably.  My fatigue also increased.  My doctors warned me this would happen.  I expected two to three months of adjustment, and that’s about what I got. Eventually my body adapted and created its own response to the pain.  Now, several months later, my pain is at the level it was while on the medication.

So I don’t know why I didn’t expect a similar transition period when weaning off zoloft. Maybe because I was on a low dose to begin with.  Maybe because I am taking three months to totally remove it from my system.  Maybe because my life is so much different now than when I first started taking it so many years ago.  I expected to gently slide through the transition with little to no difficulty.  And truly, the first three weeks were pretty easy.  However, I’m no doctor, but I can tell you that the levels of zoloft in my blood are lower this week than they were last week.

I’m quicker to the snap.  I’m edgy.  I’m surly.  I’m easily irritated and slow to recover.

It’s to be expected.  So why do I judge myself so harshly for this?  I didn’t judge myself when my pain increased; why do I judge myself when my irritability increases.  After all, both changes are a response to a chemical change — a withdrawal from medication.

I want so badly to have a good attitude about all of this.  I want to be able to smile in the face of adversity.  I want to be understanding when Verizon can’t figure out my technical issues after an hour each on live chat, the telephone, and direct message. I want to laugh, loudly and often.  I want to smile, genuinely.  But guys, I’m a little (ok, a lot) crabby at the moment.  It is what it is.  This too shall pass.

Romans 8:18

I consider that our present sufferings are not worth comparing

with the glory that will be revealed in us.

Experimentation

Ladies and gentlemen, I am about to participate in an experiment.  After two years of limited part-time employment, I am gearing up for the next level of engagement.

As you may be aware, from 2005 to 2014 I was a full-time teacher and administrator at a small private high school in St. Louis, MO.  For at least seven of those years I was a very hard-charging,  responsible faculty member who worked long hours both at school and at home.  I managed that position while being married to a seminary student turned mission-planting pastor and parenting three teenagers.  It was a very busy life full of challenges and rewards.

When chronic illness started to impact my effectiveness in that position, my husband and I began to watch and pray for God to open a path to something different.  This blog began when God answered our prayers and transplanted us in Ann Arbor where he has been serving as the Dean of Students at a small Christian university for the past three years.

When I joined him two years ago, I rested for six months and then began to experiment with different levels of employment.  I started with occasional private tutoring.  I added a summer ‘internship’ at an educational agency before transitioning to adjunct instruction coupled with private tutoring.  I’ve been doing well for the past year balancing those two positions.  I have taught a few hours a week in the classroom while supporting several private students that I meet in homes, in libraries, or in coffee shops.  I’ve loved this combination.  So, I’m continuing it this fall — at the next level.

Starting next Monday I will have three sections of college composition. (All the writing instructors in the room just gasped.) Now, to be fair, two of those sections are small at just 12-13 students each.  The third section is a more average-sized class of twenty-one. So, do your math and you will find that I am going to have 46 composition students.  That’s a solid load.  Most English teachers would say, “That’s fabulous!  What a joy to have forty-six writing students!” (My last year in St. Louis, a staffing issue created a situation where I had about 80 writing students!)  And, indeed, I am thrilled.  I am also thrilled that entering my second year as a private tutor, I have a solid student base that easily yields 8-10 hours of tutoring per week.  God has indeed engineered a sweet gig for me.

However, I am a little anxious. My health is more stable than it has been in close to four years.  With the help of my medical team I have eliminated biologic and anti-inflammatory medications.  That’s right; I take nothing for pain!  I am also currently weaning off the anti-depressants that I started taking seven or eight years ago.  I walk, do Pilates, practice yoga, and get in the water regularly. I see a physical therapist and a chiropractor,  avoid gluten and dairy, and am following my doctor’s instructions for taking homeopathic and nutritional remedies. I’m doing all the things, yet I still have a measure of pain in my hips, neck, and back.  I still have psoriasis. I still have chronic eye issues. I still get knocked down if I do too much.

So how much is too much?

That’s why this fall is an experiment.  Can I teach forty-six students in the classroom and meet with a handful outside of the classroom without spending every weekend in bed? Will I still fit in exercise? physical therapy? time with friends?  time with family? What will happen if something unexpected pops up — an out-of-state emergency, a family crisis, a family celebration? I don’t know.  Have I created a schedule that allows for these variables?  We’ll see.

I do know that the success of this semester is more likely if I continue to practice the disciplines that I have re-discovered in this time of stillness — Bible study, blogging, prayer.   It seems I struggle to fit them in, when in truth, they are the most impactful moments of my day.  Writing the prayer reminders on my mirror and my fridge is a help, but I still need to choose to act on those prompts and actually pray. My devotional materials sit out in plain sight, but I have to move toward them and take the time to engage each day.  My blog is constantly percolating in my mind and begging to be let out through my fingers, and when I allow it the space and time, I become aware of all that God is working inside of me.  When I do these three things — prayer, Bible study, and blogging — I feel centered and purposeful.  I feel at peace.

So, on Monday, I’ll step feebly forth.  I won’t try to kick any butts or take any names, I will just show up and see what God has in store in this next chapter.

Luke 12:32

“Do not be afraid, little flock,

for your Father has been pleased to give you the kingdom.

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.

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.

 

 

Low batt. p.3

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.

Divine Intervention

After a weekend away, I started my morning slowly — putting some things away, thinking through the tasks of today, and generally shuffling around avoiding my Bible study time.  Why was I avoiding it?  No particular reason.  Just out of the flow.

You may have noticed that I haven’t posted in several days again.  A few things got in my way — an appointment here, a symptom flare-up there, a weekend trip to see the in-laws. And I find that when I get out of the routine, it is a little difficult for me to jump back in.  It’s like merging into traffic.  I’ve got to find an opening and just move in.

So, finally I did.  As I mentioned last week, I am studying the book of Hosea with my Bible study battalion.  The book is all about God choosing us, even though we are bent on pursuing other ‘gods’.  He didn’t choose us once, but He chooses us continuously.  It’s not over and over again, but perpetual choosing.  Even though we are perpetually wandering, perpetually looking around at all the shiny objects, perpetually taking our focus off of Him.

He is The. Faithful. Love. of our lives.  Period.

So, small example — He loves me and is faithful to me even though I was inconsistent in my Bible study and daydreamed during church yesterday.  (I’m telling you, this pastor’s wife is far less than ideal.) He’s so faithful that today when I picked up my Bible study, He had the page turned to a huge example.

(I know I’ve written before about how, in some ways, I am thankful for the health issues that I have.  Although I am often uncomfortable, fatigued, and frustrated with running from one doctor to the next, I have been granted an opportunity to slow down, reflect, and enter this new chapter.  In fact, I’ve been slowed down so much that I can do nothing else but sit in amazement at His provision during this time.)

The Big Example — the very first words on my devotion today, I kid you not:

Therefore, this is what I will do:

I will block her way with thorns;

I will enclose her with a wall,

So that she cannot find her paths. Hosea 2:6

Now of course, this passage is talking about Gomer, the unfaithful wife who wandered off to other men.  It is also about Israel, who wandered off to worship other gods.  However, it is also about me.  That’s how the Bible works.  It is, as it says, “living and active, sharper than any double-edged sword.”  And those words this morning cut through my foggy stupor to say, “Hello, Kristin, are you ready to sit down and hear this story about how I loved you enough to block your way with thorns so that you couldn’t continue to follow your butt-kicking, name-taking paths? Are you ready to hear again how much I love you and that I am able to keep you in this pattern of life so that you will make time to fit me into your routine?”

I mean, yes. Yes, I am ready. If I didn’t get caught by that scripture, I would’ve gotten caught by the first question that the author posed,

Can you think of any ‘thorns’ that God may have put in your path to slow you down and make you think twice about something you were doing? 

Maybe some people can get slowed down by hearing a song on the radio, listening to a sermon, or having a good talk with a friend over coffee.  Me?  I need industrial strength slowing down.  I wasn’t about to turn around of my own volition.  I had to be stopped dead in my path by the thorns of chronic illness.  I had to be relocated to a different home, state, and lifestyle.  I needed a re-boot.  Or should I say a re-built hard drive.  I needed a next chapter. 

And because He loved me, He gave it to me. And just like Gomer, even though I have been pursued and claimed, even though I have been given a new identity, I still sometimes try to go back to my old soldiering ways.  I mean, I’m still human.  And He knows that.  So, he perpetually pursues me and reminds me that He has called me by name and that I am His.

Jeremiah 31:3

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

Yes, yes you have.

Answered prayers left and right

Does God answer prayer?  Yes.

How do I know?  Because I have been writing down my prayers since November 17, 2014 and I have evidence of things asked and answered.

On November 29 I prayed that two family members would resolve their issues with one another — issues that were prohibiting them from even being in each other’s presence for any amount of time.  In fact, I didn’t just pray that prayer on November 29 — I prayed it over and over and over. On December 22 I asked that these two would turn to each other. On March 30 I asked that God would breathe new life into their relationship.  How did God answer that prayer?  He turned arguments into agreements. He turned yelling into laughter.  He turned suspicion into trust.  He turned avoidance into partnership. He answered my prayer beyond what I could ask or imagine.  I was hoping for a truce; He provided an alliance.

I’ve also been praying consistently that I would find the right kind and the right amount of employment in light of my current health status. On February 26 I asked God to put me and keep me on His path.  On March 30 I prayed that God would show me how much to do and when. On April 21 I prayed that He would help me find my rhythm. On April 22 I asked that God would give me the wisdom to live within the boundaries He has set for me. On May 7 I prayed that He would grant me discernment in my work and in my family. On May 28 I asked that God would give me His pace and direct me to His work.  On June 6 I asked for the physical strength to do the things that He is calling me to. On June 30 I prayed for God’s pace and His way for me.  Lately I have been asking over and over for God to show me how to best use my time in ways that give honor to him.

Let’s digress for a moment to remind ourselves that since April I have been experimenting with employment.  After my ‘time of refreshing’ last fall — a period of time where my health was fairly well-managed, I took a position doing what I love to do — working with children.  For over four months I have been learning and growing along side some exceptionally professional coworkers and some inspiring students at an agency that does intensive instruction in reading, writing, and arithmetic.  But, if I’m going to be honest, the pace has been a little much.  It might have been ok if I hadn’t taken on about a half-dozen students outside of work,  but I just love those students — the ones I meet in libraries and their homes. They are adults, mostly, and some high school students, who need one-on-one coaching in writing and English. Interacting with them feeds me.  I have loved working both at the agency and through my tutoring service, but I have also been exhausted — too depleted to offer much to my family.  Hence, the prayers.

“Show me what you want me to do!” “Teach me how to pace myself.” “How much is enough?” “How much is too much?” “How can my gifts be best put to use?”

I had determined that as we moved into fall, I would reduce my hours at the agency and continue working with six to eight students on my own each week.  That sounded like a workable plan.  And then, amidst all those prayers and cries, came an email offering a direction I wasn’t expecting. It threw me a little.

Over the years, my oldest daughter has often come to me for advice with a Scenario A and a Scenario B — which option should she choose?  She spends time telling me the pros and cons of each alternative and then I usually say something like, “Is there a third option?”   In the last couple of years, she has started to say the same thing to me.  When I say “Should I A or B?” She will say, “What’s the third option?”

In all my prayers, I was thinking I had the answer.  I knew the current situation, A, was too much; I had determined the alternative, B, would likely solve the problem.  And then, God provided C.

I didn’t know what to do, so I enlisted the battalion and my husband in prayer and dialogue. I tried to stick with option B — my solution.  I really did.  But then I started seeing scenarios in my head that weren’t there before.  I started imagining myself in option C.  I started seeing how option C would provide a pace that I could live with while still providing the interactions that feed me.  I started to see the barriers that I thought existed evaporate.

This morning I told my husband my plan to move toward option C.  A few hours later I sat down at my computer to take some steps in that direction, but as I did so, I shot out a text to the battalion saying that I was moving forward but inviting God to step in and block the way.  It was at that moment that I paused to do my Bible study.  I am not making this up: the theme of today was to ‘not put God to the test’.

He has provided an answer to my prayers.  He has affirmed it through my husband and my prayer support.  Why would I invite him to step in and block the way? Do I need more proof?  Why? Because my faith is small.  Even after He blew my socks off with the answer to my prayers for the family situation.  Even after he provided over and above what was expected in financial aid for our daughter.  Even after he provided a job for our other daughter — one that she didn’t even apply for, doing exactly what she wants to do, in the major city where she wants to live. Even after all that, I still have a very small faith.

He answered my prayer.  He gave me a gift.  I shall say thank you and receive the gift. I won’t second-guess it or put God to the test.  I will trust that this answer is His.

Ephesians 3:20-21

 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen