Tag: chronic illness

Becoming Well(-er), a re-visit

~ Kristin ~ 4 Comments
Click the arrow to listen, or read on!

Last week, I shared two posts: the first, here, described autoimmune disease as I experience it now. The second, here, described autoimmune disease as I experienced it in the beginning. This post, another re-visit, was written in March 2019. It describes how I’ve come to view my journey with autoimmune disease. While at first I was overwhelmed, angry, and defeated by my symptoms, I now can see how learning to manage them and writing about the experience has opened a path to a new way of life. **This is not a how-to manual for those who are suffering; it is merely a narration of life in this chapter.

Five years ago, I was getting ready to transition away from a job I loved and a beautiful home in a community that had forever re-shaped us. One of several reasons for our move was my health. I had been diagnosed with psoriatic arthritis after a series of symptoms — extreme fatigue, skin outbreaks, and joint pain — had led me to a rheumatologist. I was depleted. I could no longer sustain the demands of my position, maintain our home, or do any level of caring for our family. Something had to change.

I began this blog in the midst of that transition because I needed a space to process all that was happening. Our oldest son and his wife were expecting our first grandchild. Our oldest daughter was graduating from college and moving across the country. Our younger son was in the military, and our youngest daughter was heading off to college. My husband was in a new position, and I was just going to focus on getting well for a while. While everyone else was moving, I was going to be still. (You can find the very first post from this blog here.)

A lot has changed since that first blog post. My husband and I were talking yesterday and it became clear that I don’t always articulate the changes that have happened inside of me — partly because they have happened slowly over the last five years and partly because I talked and wrote about my physical health so much in the first few years of my blog that I’m kind of over it. Certainly every one is sick and tired of hearing about me being sick and tired!

But here’s the thing, I’m not as sick and tired as I was five years ago. So perhaps it’s time to explore that reality. Maybe putting words to the ways that God has provided for my recovery will be an encouragement to me and to you. Shall we see?

First of all, I no longer have the psoriatic arthritis diagnosis. Bam! It’s gone. When the doctor told me that I did not have psoriatic arthritis, I felt angry. Certainly I still had pain, and psoriasis, and fatigue, and the HLA-B27 genetic marker often associated with certain autoimmune diseases. I had also had two rounds of scleritis, an autoimmune affliction of the eye. I thought the doctors’ removal of my diagnosis was a denial of my symptoms. However, over time, I have come to feel emancipated. I don’t have psoriatic arthritis, so, in some ways, my symptoms feel less permanent, less limiting; I feel hopeful for improvement.

Second of all, I am no longer taking medications to treat pain or inflammation. In fact, other than a daily pill to inhibit the growth of herpes in my eyes (a result of some of the psoriatic arthritis treatments), I take only supplements — Vitamins B, C, and D, fish oil, and magnesium. Occasionally, I take ibuprofen if I’m having a particularly difficult day, but mostly I am able to manage pain with movement, ice, epsom salt baths, and (a surprise to me!) peppermint essential oil. This is also quite liberating. In addition to the side effects from taking daily medication, I also experienced the feeling that I was some kind of invalid, particularly when I was injecting myself when Enbrel or Humira or Cosentyx. And since none of these drugs really benefitted my physical symptoms, I was actually getting an overall negative impact. Eliminating each of them, over time and with doctors’ supervision, was further removal of that permanent diagnosis.

Next, I have been blessed by a fabulous team. I first wrote about them here. I have found that the best way to improve my health is to regularly attend to it, so I see a specialized physical therapist twice a month, a chiropractor once or twice a month, and I recently added monthly visits to a structural medicine practitioner who specializes in Hellerwork. This regimen, along with my daily practice of yoga have worked together to strengthen, care for, and realign my body in ways that decrease my pain and increase my ability to participate in my daily life. I feel stronger, more flexible, and more capable. Imagine my joy last summer when I was able to have a daily plank challenge with my students — me, the oldest member of our staff, on the floor in full plank with a room full of elementary school boys.

Do you hear it? The sound of healing and hope? I do! That alone is worth writing about. The mental shift from “I have a chronic illness,” to “I am getting stronger,” can not be overstated. I have written often about how this “illness” has actually been a blessing for me. It gave me a reason to slow down, take stock, and re-configure my life in a way that supports physical, emotional, and spiritual health. And that process — that slowing, that experimenting, that shifting — has allowed for miraculous transformation in my thinking.

Do I still have pain? Yes. I have persistent pain, predominantly in my right sacroiliac joint and low back; the intensity of this pain varies depending on activity — how much I sit, stand, move, stretch — and how often I receive proactive treatment. (In addition to the work my team and I do, I occasionally get a steroid injection in that joint to reduce inflammation.) Do I still have fatigue? Yup. However, I’ve been amazed that since last summer I have been working 35-40 hours every week. Although this is do-able, it does limit my ability to interact with friends and family. (I need to sleep anywhere from 8 hours on a typical night to 12 hours when I’m really wiped out.) Optimally, I would like to work 30-35 hour weeks so that I can still have the energy to go for a walk and have dinner with my husband, develop friendships, and visit family. Do I still have psoriasis? Very limited. I call my psoriasis my “barometer”. If I am doing too much, the palm of my right hand becomes inflamed — that’s my first signal that I need to slow down and attend to self-care. If I ignore it, I get more outbreaks, but even then, they are much easier to manage than they were five years ago. Do I still have issues with my eyes? Yes. Like my psoriasis, my left eye will become inflamed if I am overdoing it. I have learned to take that signal and slow down to provide extra care. In this way, I have avoided major issues.

Do you see it? Do you see how God has used these signals to transform my life?

Probably more than any other topic in this blog, I have written about my soldiering ways. I was really good for a really long time at doing whatever needed to be done. I was constantly in motion — driving, teaching, cleaning, shopping, directing, running. I thought I was getting it right, but I was getting it all wrong. I was missing all the critical moments — the seeing, the listening, the caring, the holding. So rather than letting me continue in that fashion, God slowed me down. First, He sat me flat on my butt and got my attention. He has since taught me a new way of life. And, because He knows that I am bent on going right back to my old ways, He allows a few signals to remain — to remind me, “Hey, Kristin, you’re doing it again.”

That’s how much He loves me, guys. He created a plan just for me to specifically address my particular learning needs.

I remember the flood of emotion back when I got my initial diagnosis — anger, sadness, helplessness. Now? I am so thankful for this journey. I am forever changed by my experience. I would no longer say that I am ‘sick’, but that I am becoming more well every day.

I know that my story is not the same as everyone’s story. Some people experience chronic illness very differently than I do; some people suffer terribly.

If that’s you, if you are suffering right now, I pray that you, too, may experience whatever kind of healing you most need. May you be aware of God demonstrating his deep love uniquely for you.

Your journey may not look like mine, but I am confident of this: you are being carried in the palm of His hand.

God demonstrates his own love for us in this: While we were still sinners, Christ died for us.

Romans 5:8

My Sweet Experience, re-visit

~ Kristin ~ 3 Comments

Yes, it’s gushy, but since I just saw Dr. Sugar yesterday, and since he rescued me when I had a significant flare while I was in Utah last week, I decided it was time to polish this post from March 2018 and share the gushing one more time, in June 2019.

As a new volunteer for Patient and Family Centered Care at the University of Michigan, I have been asked to share part of my story at Kellogg Eye Center to a group of new Kellogg employees. What has my patient experience been like?  Since I am more accustomed to writing than to speaking, I thought I’d share what I plan to say here. 

In the summer of 2012, while my family and I were living in St. Louis, MO, I started experiencing joint pain. I had been, up until that time, a full-time teacher, school administrator, mother of four, and avid runner.  I was a very busy woman in excellent shape, so when I first experienced pain in my elbows, I believed I had an overuse injury. However, over the next several months, I began experiencing pain in my hands, feet, neck, and shoulders. The moderate sacroiliac pain and issues with my skin that I had dealt with for most of my adult life intensified. When I began to feel so exhausted at the end of my work day that I couldn’t remember driving myself home, I started the long journey toward a diagnosis — a journey I am still on almost six years later.

You might imagine that this journey has involved visits to my primary care doctor, a rheumatologist, and a dermatologist. Indeed, it has. And, since I’m standing in front of you now, you have probably concluded that my journey has also included ophthalmologists. Correct again.

Throughout 2013 and 2014, my doctors were convinced I had psoriatic arthritis. They had confirmed that I have the genetic marker, HLA-B27, joint pain, and psoriasis.  Although I did not have any inflammatory markers, they agreed that a diagnosis could be given in the absence of such evidence. I was therefore treated with the standard course of medication: NSAIDs, biologics, and other standard pharmaceuticals — certainly I cannot remember everything I have tried.

In the spring of 2014, I was winding up the academic year, one daughter was graduating from college, and another was graduating from high school. I was exhausted and in a significant amount of pain. My rheumatologist decided to treat me with a prednisone taper to give me some relief during this very busy time.

I did experience relief; however, the combination of immunosuppressant drugs and steroids created the perfect environment for ocular herpes. I woke up on Memorial Day 2014 with excruciating eye pain and extreme sensitivity to light, so I called my St. Louis ophthalmologist, Dr. Todd LaPoint. He saw me right away –came into the office before a family picnic – and immediately got me started on a course of medication that got the situation under control. I saw Dr. LaPoint several times over the next few weeks, but then another problem surfaced — I was moving to Ann Arbor at the end of July with a newly diagnosed chronic eye problem. What would I do for care?

Dr. LaPoint said he would do a little research and get me a referral. It wasn’t long before he suggested that I make an appointment with Dr. Sugar at Kellogg Eye Center. He had attended a talk that Dr. Sugar had given and knew he was the best of the best.

Dr. Alan Sugar

I remember quipping, “Dr. Sugar? I wonder if he is sweet.”

Dr. LaPoint replied, “He is!”

Almost four years later, I have visited Kellogg more than twenty times, and I must say that Dr. Sugar is indeed sweet — one of the sweetest — and that Kellogg has been an oasis as I have wandered the desert of my medical journey.

I will certainly not recount twenty office visits for you, but I do have a few highlights I would like to share.

When you saw me walk up to the podium this evening, you might not have expected that I have battled chronic pain and fatigue. In fact, if you ran a battery of tests on me right now, you would find virtually no clinical evidence that I suffer. Patients like me often meet health care providers who believe that there is nothing wrong with us. We are hypochondriacs, pill-seekers, and whiners. Even well-intentioned doctors shrug their shoulders and say, “I don’t have anything to offer you.” Time after time we walk into doctors’ offices with concerns and questions, and we leave feeling humiliated and defeated. Because we have experienced this so often, we often walk into doctors’ offices with our defenses up.  We expect to be judged, dismissed, and disappointed.

Since I’ve moved to Ann Arbor, doctors at U of M and St. Joseph’s have removed my psoriatic arthritis diagnosis.  One doctor says I have fibromyalgia; the other says I have degenerative arthritis. Frustrated with the confusion I experience from this continually changing diagnosis, I discontinued the biologics and anti-inflammatory medications and spent a year trying out homeopathic remedies. Finally, after years of trial and error, I am currently on a path that seems to be working — physical therapy, chiropractic care, lifestyle changes, and steroid injections. I’m just a few months into the first significant relief I’ve had since 2012.

In the midst of that long season of struggle, I have had one recurrence of ocular herpes and  two rounds of scleritis.  Both of these illnesses are quite uncomfortable, so one day when I felt a slight change in my left eye, I called Kellogg and arranged to see Dr. Sugar. When he entered the examination room he said, “How are you doing?” I answered, “I may have jumped the gun, but I just feel like something is wrong with my eye.” I was already putting up my defenses, expecting Dr. Sugar to be like many other doctors I have seen; I could already imagine him saying  ‘there’s nothing wrong with my eye’.  However, he didn’t say that. Instead, he said, “I always want you to come in, whether we find something or not. If you think something is wrong, I want to see you.”

It may have been during that same appointment, or it may have been at another one, when he examined my eyes and said, “I don’t see anything, but that doesn’t mean you are not experiencing anything.”  This may seem insignificant to you who practice medicine, but to those of us who suffer with invisible illnesses, finding a doctor who does not dismiss our complaints or deny our reality is rare and life-impacting.

In January of 2017, my husband and I were planning for a trip to Israel.  Because I had recently struggled with a round of scleritis, I was concerned about traveling abroad. What if I had a flare in Israel?  When I mentioned my concern to Dr. Sugar, he pulled out a pad of paper and wrote the name of a colleague– a cornea specialist — who practices in Tel Aviv. He assured me that if I had a problem, I should contact that doctor and he would be able to help me.

One weekend last spring, I woke up on a Saturday morning with pain in my eye. I immediately called Kellogg. The on-call doctor opened my file and said, “I see you are a patient of Dr. Sugar. He likes to be called whenever one of his patients has trouble on the weekend. Let me try to reach him, and I will call you back later today.” Not fifteen minutes passed before my phone rang. The on-call doctor had already spoken to Dr. Sugar who had given him a message to convey to me: directions for how to proceed over the weekend and the message that a prescription was waiting at my pharmacy.

Surely you agree that Dr. LaPoint’s recommendation was spot on.

Let me just take a moment and share one other layer. I am a life-long educator. I have had students of all ages from early childhood up through college. One extra joy I experience at Kellogg is the mentorship I witness. While some patients may be annoyed that a resident or an intern is in the room, I love witnessing the interchange of Dr. Sugar with these future-specialists. His approach is intentional — I have seen him be encouraging with one resident and direct with another. I have watched him peer through one side of a dual-microscope while a resident peers through the other.  He listens to the ‘student’ describe what he sees and points out anything he has missed. It’s quite phenomenal to witness. I have remarked to more than one resident that they are quite privileged to learn from such a distinguished physician. I do recognize that his standards are high, and that working under his supervision may not be easy, but I believe the experience they are getting just standing in the room with him all day long is among the best training they could receive in the nation.

I would be remiss if I didn’t mention that along with Dr. Sugar I have received care from others within his office including Dr. Shtein and many fellows.  Each time I have received quality intentional care that leaves me feeling heard and understood. I have not had one bad experience.  This is uncommon.

I have visited many health facilities in the past six years — both in St. Louis and in Ann Arbor.  I have met numerous health care professionals.  Kellogg is at the top of my list of a very few places that I actually look forward to visiting to receive care.  Please continue this tradition of excellence as you join the Kellogg staff.

Do not withhold good from those to whom it is due, when it is within your power to act. –Proverbs 3:27

Making Up for Lost Time, revisit

~ Kristin ~ 1 Comment

Editor’s Note, January 24, 2019: I’m looking back at old posts and seeing how they resonate with me now. This one, in light of what I wrote on January 21, 2019, reminds me of all the ground work that God did in anticipation of 2018. While we were trudging through, my husband and I often reminded ourselves, “none of this is a surprise to God.” This post, originally written in 2017, is evidence that He knew what was coming and was preparing us in advance.

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, it could’ve been handled differently. 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?  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

~ Kristin ~ Leave a comment

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

~ Kristin ~ 2 Comments

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

~ Kristin ~ 2 Comments

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.

One of those days….

~ Kristin ~ 1 Comment

Did you ever have one of those days?  I had one this week.

It actually started the night before.  My husband was out of town, so I stayed up a little too late watching Netflix and crocheting.  Yes, I know, I am a rebel. Full disclosure — I was also sipping wine.

I set my alarm for 7am when I crawled into bed around 11:30pm because I had a physical therapy appointment the next morning at 8:15 about thirty minutes away from my home. (No, I don’t need more time to get ready.  My PT knows that I roll out of bed, fix my tea, and then drive to her.  I don’t always even comb my hair.)

When my alarm went off, I groaned, creakily rolled out of bed and realized that since my husband was not home, I would have to be the one to take the dog out for his morning duties.  That accomplished, I came back in and got dressed.  (Yes, of course I took my dog outside, on a college campus, in my pajamas. The students don’t even point and laugh any more.)

I dressed, made my smoothie, a cup of super strong black tea, and my special morning green tea laced with lemon, cinnamon, and honey.  Since it was nearing time to leave, I crated the dog and started shuttling my parade of beverages out to the car.  I put a water bottle and my black tea in the cup holders.  Then, I wedged my smoothie behind my purse on the passenger seat.  My green tea?  I set it on the floor of the driver’s side for ‘just a moment’ while I ran back to close the door.

I know you see what’s coming…and this is only the beginning.

I shut the door, ran back to the car, and climbed in, forgetting that I had placed my tea on the floor thirty seconds earlier.  My size 9s kicked the dainty little cup and dumped six ounces of sticky mess onto the floor.  Since I was now running short on time, I reached in the back seat and grabbed the sheet we use to protect the seat from golden retriever hair.  I shoved it onto the driver’s side floor and proceeded to my appointment.

When I arrived at the physical therapy office after my thirty minute drive, the office manager greeted me with, “I have you down for 9:15.” “Oh, ok, mind if I hang out here for an hour?” “Not at all.”

I pushed away the thoughts of an extra hour of sleep or drinking my beverages at home and found a seat on the couch in the waiting room.  I checked my emails, Facebook, Twitter, and Instagram, then set my phone beside me on the couch and grabbed a magazine.  When the magazine, a local healthy living piece, suggested that my ground was ready to plant peas and spinach, I leaned over to get a pen out of my purse to make a note.  Just then I heard a swoosh-clunk and realized that my phone had slid down the space next to the cushion on the couch.

I slid my arm down the same space and realized that I couldn’t reach my phone to retrieve it.  I stood up to remove the cushion to get better access only to find that the cushion wasn’t the removable kind.  I got on my hands and knees to reach under the couch only to find that the bottom fabric was taut and secure.  After another attempt to fit my arm down the crack, I looked over at the office manager — yes, the same one who had informed me that I was an hour early — and asked her for a little help.

Together we examined the couch.  We reached into the couch.  We tipped the couch forward.  We tipped the couch backward.  Finally we discovered a small tear in the underlining of the couch.  If we tipped the couch backward then lifted one end higher than the other, we could coax my phone to the opening and free it.  Mission accomplished. Phone freed.

But wait, there’s more.

I drove directly from my appointment to cast my vote in the presidential primary.  That took a grand total of ten minutes — no complications.  Phew.  So, I drove home to clean the tea out of the car.  Just as I entered campus, my car informed me that I had forgotten to get gas.  It was gasping on the remaining fumes.  So, I turned around and drove back out to get gas, then returned home to deal with the sticky mess.

The sheet I had shoved under my feet was one of those cheap microfiber ones, so it hadn’t really absorbed anything. It had just provided a barrier between my shoes and the mess.  I grabbed a towel and started wiping up the goop when suddenly I felt a sharp pain in my low back.  I slowly rose to standing to assess the situation.  “Come on, I gotta clean up this mess!  I don’t have time for an injury!”  In fact, I didn’t just want to clean up the tea, I wanted to wipe down the interior of the car, maybe run a vacuum, then put a clean sheet on the back seat.

After all, a student was coming to walk Chester with me, and the Dean requires that we take him off campus to walk, so we were going to have to take my car, and I didn’t want this student to see the evidence of my carelessness.  I walked around a bit, grabbed the vacuum and a wet soapy wash cloth and went back to finish the job.  By the time I was finished, the car, good ol’ Suze Cruze, was looking quite snappy — at least on the inside.

However, after maneuvering a couch and cleaning out a car, my body was experiencing some post-traumatic stress and pain.  I had fifteen minutes until the student would arrive, so I iced.  Then we walked. Then I iced some more.

Then I tutored.  Then I iced.  Then I tutored.  Then I iced.

I’m happy to say that the following day my chiropractor was able to put everything back where it belonged.  I wish I could say that he also was able to repair the disfunction in my brain that misunderstood my appointment time, forgot about the tea, neglected putting my phone in the pocket in my purse that was especially designed just for phones, and overlooked an empty gas tank. I mean, he’s a chiropractor, not a miracle worker.

I’m also happy to say that I was able to laugh my way through all of this.  I hope I made you laugh a little bit, too.

Proverbs 3:4

a time to weep and a time to laugh,

In My Weakness…

~ Kristin ~ 2 Comments

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

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

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

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

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

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

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

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

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

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

Beloved, regardless of wallowing

~ Kristin

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

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

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

That, my friends, is professional-level wallowing.

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

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

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

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

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

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

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

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

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

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

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

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

Hebrews 13:5

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

Low batt. p.3

~ Kristin ~ Leave a comment

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

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

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

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

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

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

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

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

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

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

2 Corinthians 12:9

 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.