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.

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Hope

I don’t know about you, but I’ve been tempted to feel a little pessimistic lately.  The presidential campaigns, acts of violence, international events, and their portrayal by the media could make a girl pretty cynical.  Add to that the postings on Facebook and Twitter, and I might just walk around grumbling about the ‘terrible state of the world’.   I might even be heard muttering things like, “this country is a mess,” “it’s only going to get worse,” etc.

I start, actually, to sound like someone who has no hope.

But I do!  I do have hope.  I have hope for our country in the midst of the current political climate.  I have hope amidst senseless acts of violence.  I have hope despite the changing economy of Great Britain and its effect on US markets.  I have hope regardless of how afraid and desperate the media would like to encourage me to be.

Why?  Why do I have hope?  Because our God — the God who created the world out of nothing, the God who designed the intricacies of the human body and mind, the God who provided His own Son to suffer the consequences of our sin, the God who has provided for me every day of my life, the God who has blessed me and my family beyond what we ever could ask or imagine — is still on the throne.

And he is not aloof.  No. He is actively involved in the lives of His creation.  He has seen every political speech, and He can discern every lie from every truth.  He knows already who will be elected, and He has the power to make any result work together for good. He has watched every mass shooting.  He stood amidst the chaos as lives were cut short.  He understood the motives of the assailants and the fear of the victims. He alone can comfort those who mourn and intervene to prevent future devastation. He knows how much money each of us has in our savings account and in our pocket.  He knows our needs even before we ask.  Not one of us is forgotten by God.

We have hope.  God’s people have faced worse — 400 years of slavery in Egypt, 40 years of wandering in the wilderness, persecution, division, war, famine — and God has been able to step into these circumstances and work miracles.

He is still able.  He acts in spite of man’s foolishness, selfishness, and sinfulness.  He acts because He loves us, created us, and calls us to His purposes.

I believe that one of those purposes is to be flag-bearers of hope in a world that is tempted to lose hope. I have been falling down on the job lately.  I have not been communicating the hope that I have inside of me.  So, today I turn.

Hope with me, will you?

Romans 15:13

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Writing

Over the last several weeks I have been thinking about writing and writing instruction.  In a little over a week I will be leading two groups of high school students through a summer course in essay writing.  In the fall I will be teaching three sections of freshmen the fundamentals of writing at the college level.  With these courses in mind, I read Anne Lamott’s Bird by Bird. I’ve also got Axelrod and Cooper’s Concise Guide to Writing 

I spend a lot of time reading, writing, and talking about writing.  I know it’s not as important to everyone else as it is to me, just like I know that some people care more about balancing their checkbook than I do.  (Like everyone.)  I try not to make every single conversation about writing, but all of my conversations are inextricably linked to my writing process.  It’s like I’m carrying a giant Santa-bag full of words over my shoulder.  In conversations, I am able to off-load some of the words in my sack, but at the same time, the words of others are crawling up the sides and into the mouth of that same sack. They mingle in there, all those words.  They jumble; they bump against each other.  They smooth each other’s edges. They rearrange and form ideas that I hadn’t thought of before.

All that shuffling and processing goes on and on…then I sit down to write, and stuff comes out of my fingers in ways that I had never imagined.  I start picturing, for instance, that my words are kept in a giant Santa-bag, but that other  people carry all of their words, at least the ones that they want to share, in an attractive little Coach bag neatly slung across their body.  I can’t even imagine that!  I am constantly stumbling along, wielding this enormous load of words — they are continually falling out, even when I try to close the top of the bag or shove it in the trunk of my car.

This is why I write. I write to use up some of the words in that bulky sack.  I write to allow the newly formed ideas some space to express themselves.  I write to protect you, my friends, from the fire hose of words that would come streaming out of my mouth uncontrollably if I did not temper the flow by putting 500 to 1000 words on the page in a day.

I teach writing because not everyone is as obsessed about the written word as I am, but almost everyone has to find a way to put their words down in print for one reason or another. Some people, I’ve found, want to improve their writing so that their work emails won’t be misconstrued.  Some have to improve their writing so that they can be admitted into a college or program.  Others are quite proficient in writing in another language but struggle to convey their meaning in English.  And occasionally, a student wanders into my class, stumbling through the door, trying to find a space to cram his extra large Hefty bag full of words.  He looks desperate.  His eyes search my face pleadingly.  I smile knowingly, show him where to sling his bag, pull out a chair, and tell him to start writing it all down.

He’s overwhelmed, of course.  How could he possibly put it all down?  Have I seen that bag?  I nod compassionately and show him my Santa bag sitting outside the window of the classroom — it no longer fits through the door.   He swallows hard, opens a blank notebook, and looks up at me.  I nod and urge him on.  His pen starts moving across the page.  He doesn’t notice the other students filling in the chairs around him.He doesn’t look up when I start class. He doesn’t realize, either, an hour later when they’ve all left to go to their next classes.  He’s still bent over his notebook.

So, I sit down, too.  I open my notebook and pick up where I left off.  We sit there and put our words on paper until they stop streaming out of our pens…or until we are exhausted or famished.

Then quietly we push back from our desks, shove our notebooks into our bags, and notice that they are a bit more manageable to carry.  Our steps are a little lighter.  We nod silently at one another and each go our own way.

For those moments and so many more, I am thankful for writing.

2 Corinthians 12: 4-6

There are different kinds of gifts, but the same Spirit distributes them. There are different kinds of service, but the same Lord. There are different kinds of working, but in all of them and in everyone it is the same God at work.

Returning

No, I did not fall off the planet.  No, I did not abandon my blog.  Yes, I did stay away from it fro the longest stretch of time since I started writing it two years ago.  And, just like everything other discipline, the longer you stay away, the harder it is to get back on track.

When I was in high school, my band director said that we should practice every single day, even if only for 10-15 minutes.  He impressed on me the idea that every day I did NOT practice would take two days to get back to my current level of skill.  I think he wanted to scare me into consistent practice, and his method worked for a while.  However, it had an unintended consequence.  After I left the high school band, and didn’t play my flute for several months, I considered his math and decided that I didn’t have enough time in my life to get back to the level of skill I had currently enjoyed.  I mean, if I hadn’t played for 180 days, it would take me 36o days of consecutive practice just to get back on track!  I was exhausted just thinking about it!  I haven’t played my flute in years.

Exercise is similar, isn’t it?  I used to be a distance runner.  I completed two half-marathons and several 5K and 10K races.  It was typical for me to run 3-5 miles 5-6 days each week with occasional longer runs.  In fact, at one point, three miles felt like an “off” day — like I hadn’t really run at all.  I was in excellent physical condition.  At that point, I could not run for several days in a row (although that rarely happened) and still have the capacity to easily run five miles.  In fact, sometimes a break of three or four days would make me crave that run. When I finally had the time and opportunity to put on my running shoes, I would burst out the door with a ridiculous grin on my face, thrilled to be back at it.  However, now that illness has limited my ability to run, and I haven’t run three miles in  over three years, the idea of getting back to that level of fitness is a bit daunting.

I have a mixture of feelings as I sit here today.  I am thrilled to be back at my blog after a long absence, but I don’t really know how to get back to where I was.  What thread should I start with? health? work? teaching? writing? I’ve been wanting to post all week, but I keep finding other things to do — cook, clean, meet a friend for coffee, see a student, work on a puzzle, weed the garden.  This morning, I determined that I would finally sit down and write, but I wandered around the house a bit first.  What am I going to write about?  Where do I begin?

It took me a moment to remember my practice — my routine.  Drink smoothie. Check. Drink green tea. Check. Brew black tea. Check. Sit down, Kristin, sit down. Open your Bible study. That’s right.  Read it.  Turn to the Word. Psalm 107:20: “He sent forth his word and healed them; he rescued them from the grave.”

Yes, yes He did.  He sent forth his Word and rescued me from the grave. Let’s start there today.  It’s not difficult to go back to God’s Word, even after a long absence.  You don’t have to build stamina.  You don’t have to get back to a former level of performance.  “Behold, He makes all things new.”  He breathes His breath of life into us each moment that we turn to Him.

We give ourselves all kinds of laws and expectations, don’t we? I’m going to eat healthfully, exercise five times a week, blog every day, etc. Our intentions are good, but often, when we don’t meet our expectations, we beat ourselves up with the shoulda coulda woulda messages.  These messages have unintended consequences.  Instead of propelling us back to positive disciplines, they bury us in shame and prevent us from doing what we want to do most.

So, today I turn.  I turn back to His Word.   I turn away from self-blame and self-shame and embrace the God who healed me and rescued me from the grave.  “His mercies are new every morning,” and my mercies can be, too.

Lamentations 3:23

Great is your faithfulness.