Off the couch, at the table

Trying something new. Click above to listen to me read this post.

I recently wrote a post, On and Off the Couch, which was both an acknowledgement that I had been grieving some substantial losses for quite some time and an announcement that I was ready to move away from that period. A recent experience helped me take the first steps.

While I was still sitting on my dilapidated pleather couch, the University of Michigan reached out to me — would I be willing to participate in a study the Nursing School was conducting? The participation requirements were that you a) be over 50, b) have a chronic illness, and c) have a wifi connection. The study would take 6-8 weeks, and upon completion, I would receive a $150 gift card.

Well, why not? Since I’ve lived in this little house by the river, I have been open to experimentation. In fact, I once even called myself a lab rat! What did I have to lose? The goal of the study is to determine if ongoing nursing care can impact the lives of those with chronic illness. Let’s find out.

Going into the study, I was picturing that a nurse would come to my house, clipboard in hand, checking boxes to make sure that my home environment was safe. I was guessing that she would give me some tasks to do. I knew that I would be expected to make a voice recording every day and to meet with my nurse via video conference once a week.

I was not anticipating being nudged off the couch and supported into a new rhythm of life. I did not see that coming.

Yes, I was ready. The couch was sodden from all the tears I had shed on it and was practically disintegrating under me. I could see that I was going to have to stand up soon, but I gotta tell you, I was still pretty comfortable, so I was lingering for as long as possible.

Then in walked this nurse, who sat across the table from me, asking me some non-threatening questions and inviting me to set some goals. What types of change was I interested in making, she asked.

I told her all the changes I had already made — practicing yoga, avoiding gluten and dairy (and now corn), and writing every day. I said, “If there is any stone that has yet to be turned over, it is probably addressing my weight. Since chronic illness benched me from running in 2013, I have gradually put on about 10 pounds.”

I wouldn’t say I am overweight, but I am not overly thrilled with the way I look, even if by lifestyle I have diminished most of the symptoms of my illness and I feel the best I’ve felt in years. I keep trying to decide if I should just be content and accept this as how I look as a 50-something woman, or if I should try to make a change.

I don’t overeat. I do yoga usually five or more days a week, and I often go for a 20-30 minute walk sometime during the day. What more could I do to drop some of this weight?

“Maybe,” I suggested to the nurse, “my husband and I need to stop eating our dinner on the couch in front of the TV. Maybe we should go back to eating dinner at the table.”

I cringed as I said it. I didn’t want to make this commitment. We had established quite a rhythm during the Season of the Couch. Come home, utter a few words to one another, fill our plates, and plunk down in front a string of meaningless shows. It was quite comfortable. We were together, after all, and we didn’t need to say a lot. Couldn’t we just continue coexisting in our misery?

But I knew, I knew, it was a change that needed to happen.

We were the ones who, when our children were small, ate all our meals at the table. We all ate a big breakfast together before the kids left for school and he left for work. Those who were home with me ate lunch at the table. At dinner, we all gathered for a sit down meal — no matter how fatigued we were, how distressing the conversations got, or how many glasses of milk were spilled (typically three). Although it was sometimes stressful, we valued the face time this gave us as a family.

Even when the kids were teens, we still made an effort to eat breakfast in close proximity to one another (maybe standing with a bagel or a bowl of cereal in hand) and come together for dinner. I’d be lying if I said that every meal was blissful and meaningful — they were not. However, this rhythm allowed a check-in, a reading of the temperature of the room, a moment to gauge the health of the family and the individuals in it. It was sometimes difficult to look all that hurt straight on, but we continued.

I think when we moved — just the two of us — to this little house by the river, we started out at the table. It was natural. He was working all day, and I was taking some time off. Making dinner and setting the table gave me a project in the afternoon. We would sit across from one another, sharing a re-telling of the day, making plans for the upcoming weekend, or discussing a planned purchase or a current event.

But when our bottom fell out and we found ourselves scrambling for something to hold onto, we landed on the sectional in the living room, plates in hands, eating quietly, and watching Jeopardy or Law and Order. It was a comfort to be together, not talking, just existing in our grief.

So we stayed there.

Until I uttered those words, “maybe we need to stop eating our dinner on the couch in front of the TV.”

When I said them, the nurse asked me, “Will your husband be open to that?”

“Well,” I said, “I think he’ll initially grumble a little, but I think he knows we need this change, too. I think he’ll be on board,”

And he was. When I told him my goals, he gave a sigh, then said, “Yeah, I’m in.”

We started that evening. I made dinner, we filled our plates, and instead of walking toward the couch, we sat at the table, across from each other, and practiced having conversation over dinner.

“What was your day like?”

“Have you spoken to any of the kids today?”

“How are your parents doing?”

It was a little awkward at first, using those conventions that we hadn’t used in quite a while, but over time, we remembered how to have a conversation over dinner. We found the rhythm of clearing our plates and putting away leftovers together. We discovered that we can watch a television show or two in the evening rather than scrolling through several.

It might not seem like a big deal, but it was one of the first steps in getting us off the couch and out of the season of grieving.

I met my nurse, Karen, about six weeks ago. My husband and I have carried our plates to the living room three times since then. All of the other nights we’ve eaten together at a table, either at home together or out with friends or family.

We’re talking to each other; we’re laughing. It sometimes feels like we’re celebrating.

And, in a sense we are. Our reason for grieving hasn’t changed, but we have reason to hope that God is in the process of making all things new.

I haven’t lost any weight — not the kind that can be weighed on the scale. Instead, I’ve found some joy that I was beginning to think I wouldn’t feel again.

It seems to me that ongoing nursing care can make a difference in the lives of people with chronic illness (and chronic grief). I’m thankful to Karen and the University of Michigan Nursing School for giving me the opportunity to participate in this study.

I’m not sure this is the kind of change they were hoping to make, but it was the kind of change that we needed.

I will turn their mourning into joy;

    I will comfort them, and give them gladness for sorrow.”

Jeremiah 31:13
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A Return to Best Practices

Early in this blog, much of my content was about my ongoing journey through chronic illness — pain, fatigue, and issues with my eyes and skin. I don’t write about it much any more, because most of my symptoms have leveled out; I don’t often have a crisis. Sure, pain is still present every day; yes, my eyes can give me challenges from time to time; and, of course, my skin continues to be my first alert system. However, for the most part, I have found a new rhythm that sustains my health and has even allowed me to work full-time and enjoy life outside of work. (Read my latest health update from March here.)

In fact, I’ve been in this rhythm so long, that I can forget how miserable I was just a few years ago — when I had to limit myself to 1-2 activities a day, when I frequently found myself doubled over in pain or lying on the bathroom floor waiting to throw up, when I had to lie down for a while in the morning and in the afternoon due to extreme fatigue. Yeah, it was really that bad, so now when I work 40 hour weeks for months in a row, occasionally meet friends for dinner after work, or travel two weekends in a row, and suffer no consequences, I can get a little amnesia — the kind of amnesia that leads me to push the limits.

For the past month, I have been pushing the limits. We have had out of town visitors at least four times and have attended two family reunions, one wedding, one dance lesson, and at least two dinner dates with friends. No problem. I was feeling fine. Yes, I had to go to bed early a couple times, but I recovered quickly. I was able to keep writing most mornings, do yoga, go for walks, and still manage my regular household tasks like groceries, laundry, and cooking. I didn’t miss work or cancel any plans.

But this past week, I kicked it up a notch — I threw all caution to the wind.

After church last Sunday, my husband and I shopped for a few hours while we waited for new tires to be installed on our car. Monday, we met after work to grab a quick bite before cheering on our son in a local 5k; we even hung out with him for a while afterward. Tuesday, I attended my end-of-summer staff party complete with Chipotle and trivia. Wednesday, I met an old friend from high school for a quick reunion. Thursday, I ate out, played, and laughed with my son and godson. What a fun week!

And it might have been ok, if I hadn’t missed my last PT appointment or skipped my chiropractor for three weeks running, if I hadn’t been up later than usual every single night, if I hadn’t omitted yoga four days in a row, if I hadn’t had the corn chips with my Chipotle, if I hadn’t had two slices of pizza (all that gluten and dairy) at work on Wednesday, or if I hadn’t said, “sure Ethiopian food will be fine.”

People often ask me, “What do you notice when you avoid gluten and dairy?” or “Does yoga really help you?” or “Really, a chiropractor makes a big difference?” or “That PT sounds weird, are you sure it works?”

I typically say something like, “I’m not sure what does what, but I know that when I do all the things, I feel good enough to live my life. When I don’t do the things, I’m on the couch or in the bed.”

After a month of rich living, I abandoned my good practices for a week, and when I woke up Friday morning, I felt rough — my head hurt, my eyes were begging to be closed, I was nauseous, and I really thought I wouldn’t make it through my work day. I allowed myself an extra 30 minutes in bed, then begged the hot shower for transformation.

I dragged myself to work, mentally marking the four-hour countdown to lunch hour when I would finally see the chiropractor. It was a particularly challenging morning at work — complete with schedule changes, atypical student behavior, and two parent meetings –but I did my best and made it to lunch time.

I willed myself to drive to the chiropractor, rubbing my aching neck and fight back nausea. I was miserable. “Please, Jesus, let this adjustment at least alleviate this headache.” The chiropractor may have said, “wow” a couple of times as he moved up and down my spine putting each piece back in its assigned location, and he may have said, “well, that should make a difference” as we heard the pop of my sacroiliac joint jumping back into place. I can’t remember exactly what happened, because he then applied acupressure to two spots right below my eyes and then two spots on my forehead and the pain of my headache was instantly cut in half. I was astounded and relieved.

I walked to my car promising the doctor (and myself) that I’d return on my regular schedule. I drove back to work, where my office manager met me with a Whole Foods delivery — warm goodness without gluten or dairy or corn. I sat at my laptop with an ice cold Coke and my roasted chicken and vegetables and began to feel well again.

It was a quick turnaround — unlike the systemic flares from just a few years ago that would take 24 to 48 hours, this one lasted only about six hours. Just long enough to scare me straight.

All during those six hours I was picturing the tile of the bathroom floor and imagining myself packed in ice on the couch. I had forgotten those realities, but they showed up to remind me to return to my best practices.

I made a home-cooked meal on Friday night — roasted pork cutlets with rice and sautéed fresh vegetables and then slept for nine hours. I started Saturday with writing, yoga, and oatmeal before heading to a 90-minute structural medicine appointment where the practitioner moved all the muscles and ligaments to support the chiropractor’s work. I spent the afternoon doing food prep — making Kristin-friendly muffins and cutting up veggies and melon– and organizing my office. I finished the evening with three episodes of Queer Eye because it’s wholesome and friendly and hopeful.

I’m writing this on Sunday morning, and I’ve already journaled, done yoga, and am writing now to remember — that the full life that I enjoy is a gift. In a little while, I will head to church where I will give thanks for this gift– this physical restoration that is a mere shadow of the more complete restoration that has been happening inside. I will give thanks for both, and I will continue to return to all of my best practices.

Addendum: It’s now Monday morning. Yesterday on our drive to church, my husband and I started filling our day with visits and errands, and chores. We had quite a list, so we both agreed to “see how it goes.” By the end of church and a congregational meeting, I had decided I needed to see a doctor; I had symptoms that suggested an infection. So, we drove to our practice’s walk-in clinic to have me checked out. No infection, just more evidence of inflammation–I needed more than twenty-four hours to recover, apparently.

So, we scrapped our plans, came home to nutritious leftovers, an hour at the puzzle, a nap, and two episodes of The Great British Baking Show — yes, we’ve pulled out all the stops! In a little while, I will start my week with a trip to the physical therapist for the final “laying on of hands” in this series.

I am so thankful for my current health and this journey I’ve been on — a journey that tangibly shows me the value of self-care, a journey that allows me to do my best and gives me grace to recover when I’ve gone off the rails, a journey that reminds me to return to my best practices.

For from his fullness we have all received, grace upon grace.

John 1:6

Becoming Well(-er)

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 all of this change 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 teaching and staff development, let alone 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. I used to be angry about this. When the doctor told me that I did not have psoriatic arthritis, I felt dismissed. Certainly I still had pain, and psoriasis, and fatigue, and the HLA-B27 genetic marker often associated with certain autoimmune diseases. And 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 have to take some 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 travel to see family frequently. 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 re-instructed me in how to live a healthy 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. And certainly, my route to healing is just that — my route. However, I pray that you, too, may experience whatever kind of healing you most need and that you would be aware of how God demonstrates his deep love uniquely for you. Your journey may not look like mine, but I am confident of this: like me, 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

Body Signals

The physical body is uniquely designed to send us messages that help us take care of ourselves. For example, I have a ten year old student who has beautiful long eye lashes. These eye lashes serve to keep dirt out of his eyes, but occasionally one, rather than staying where it belongs, pokes in and causes irritation. His eye begins to water, and my student does everything he can to get that lash out of his eye. Feeling the irritant, the eye signals my student to make eye lash removal a priority.

Similarly, our bodies signal fatigue at the end of a long day, prompting us to go home and get some rest. They signal hunger so that we will be sure to eat foods that fuel our many activities. They tell us when we are cold so that we’ll put on more clothes, and they signal pain when we have an injury.

Most of us respond to these signals. We get sleep when we are tired. We eat when we are hungry. We wear warmer clothes in the winter and tend to injuries when they occur. However, the human body is also able to ignore these signals for short periods of time in order to meet immediate demands, respond to crisis, or push through difficult periods. Soldiers and rescue workers have demonstrated this ability to be highly effective for long periods of time without rest or proper nourishment. However, all of us, after a period of ignoring the body’s signals, must take time to recover, to heal, to restore. If we continue in a chronic state of over-doing, the body has to develop some next-level signals — it begins to demand attention.

Several years ago, my body did just that. After years of trying to power through responsibilities without responding to my body’s physical, spiritual, and emotional signals, I began to develop symptoms: skin rashes, joint pain, extreme fatigue, and eye inflammation. At first, these symptoms side-lined me. They were so insistent that I had to take several months of intentional care and then several years of refined practice to move back into the game. These next-level signals forced me to care for my body after a long period of neglect.

Now that I’m off the bench, I’ve learned that these chronic issues can be kept at bay if I work a moderate number of hours, practice yoga, avoid triggering foods, and get plenty of rest — if I make it a habit to listen to my body’s signals. However, if I fall back into old patterns — working too many hours, ignoring my self-care practices, or eating carelessly — my eye begins to hurt, my skin rashes flare, and occasionally I get knocked down. I find myself on the couch with ice packs and fluids, tending to my body after a period of neglect.

For the past month or so, my sessions with one particular online student have been fraught with technical issues. We lose our internet connection, my screen freezes or her screen freezes, or we experience an irritating lag that makes our communication difficult. When I opened her virtual room last week, it was evident almost immediately that we were going to struggle, so I called our IT department. They started trouble-shooting the session, and it became apparent that other instructors’ sessions were suffering, too. Finally, after many attempted fixes and much frustration, IT recommended that each of us clear the cache on our web browsers. None of us had done that in quite a while, and our chrome books were bogged down. They couldn’t continue to function until we gave them some of the maintenance that they needed. It didn’t take long, just a couple clicks, and the efficiency of our internet was restored.

It seems that our habits of hurriedly moving from student to student had prevented many of us from completely powering down our computers, from doing regular computer maintenance, from clearing our cache. Neglected, our computers stopped working.

Similarly, I’ve been pushing my body lately. We’ve been short on staff since the beginning of the year, and all of us have been working long shifts and managing extra responsibilities. It’s hard on all of us. And while I am making sure that I write and do some yoga every day, I’m not taking time to clear my cache. I’m getting bogged down. I have noticed little glitches — I make a sarcastic remark, I run just a little bit late, or I miss a significant detail. Then all of a sudden, I find myself on my couch — unable to function properly.

So what’s going to change? What have I learned from repeating this cycle over and over again? Sure, some things are outside of our control. We definitely are short-staffed, and since I am in a leadership position, it only makes sense that I would be working all the available hours. So what can change in my attitude about work? That’s a good question.

My husband has a saying, “care, but don’t care” —care for my students and their welfare, but don’t own responsibility for them. Love my students, give them my best, but remember that I can give them my best without giving my all. I’m not good at this. I’m an all-in kind of a girl, but I’m thinking I have to find a way to set my idle a little lower. I want to be present with my students and coworkers without owning their successes so deeply, without feeling each of their struggles so personally.

I think my tendency to overwork and over-care stems from a desire to be needed. I mean, I don’t get up in the morning and say, “Let me go pour my whole life into my students so that they will appreciate and value me.” It’s not that simple. Belief systems run deep; they operate in the subconscious. Perhaps I have this thought deep in my core that if I meet all the needs of my students, I will be worthy and acceptable. And that thought, which stems from insecurity, actually masquerades as superiority — they need me, what would they do without me? 

But guess what, when I called in sick today, my agency did not close. All the students are still meeting with instructors. Progress is still being made. I’m an important player, but not so important that I can’t take a beat for self-care. I can pause to clear my cache.

To be honest, I do. In addition to taking time to write and do yoga, I regularly do several other forms of self-care. I just need to not work as though my worth depended on it.

Because it doesn’t.

I am valuable, needed, and appreciated, even when I am in yoga pants and an oversized fleece on my couch. Right now that’s what my body is telling me it needs — at least for today.

I’ll try to keep listening to its messages tomorrow.

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

Matthew 6:25-26

Time Trial

You knew it was coming.  You read some blah, blah, blah I wrote about working 20-30 hours a week, and you rolled your eyes and thought to yourself, “Yeah, that’ll last.”

You think you know me?

Ok, fine.  I’m pretty predictable.

I was a few months into my current position when my supervisor asked me if I would be interested in doing a little more training to become a mentor to other instructors — newly hired clinicians who, by design, receive scheduled coaching. Well, yeah. I’d like to do that. I mean, 1) I’ll take any training you will give me. I love to learn;  2) I love observing  other professionals. It sharpens me as much as it sharpens them. So, bam, I became a mentor.

I was getting used to that position when I was approached again: would I be interested in being an instructional pacer. I’d have to get a bit more training regarding standardized tests and analyzing student scores. I’d also have to see how our instructional practices target the specific learning needs of each of our students. In other words, I’d have to understand the why and how of instruction.  Was I in? Definitely.

I was willing to step into these positions knowing that I would be called upon to work more than the hours I initially agreed to because although I’ve struggled with my health for six years now, I have been feeling fine since I started this job. Maybe it’s the fact that I had a series of steroid injections in my S/I joint in January (about the time I hired in), and my pain has been greatly decreased. Maybe it’s the consistency of the schedule — my work day never falls outside of standard 8-5 hours. Maybe it’s the positivity of the work environment — we clap, hooray, and celebrate all day long. Maybe it’s a combination of all these factors that have made this position a good fit for this time.

Whatever it is, I have decided that I’m willing to try full-time employment for the summer.  I’ll give it a shot and see how it works. If you’ve read my blog for any amount of time, you realize that I’m willing to experiment a little — I’ve followed an ultra simple diet, I’ve tried multiple medications, and I’ve worked a variety of jobs.  Each of these experiments has taught me something about myself and the ways that my body and mind function best. I’ve learned that my body prefers tea over coffee, that my skin breaks out almost immediately if I eat corn (even my much-loved popcorn!), that pharmaceuticals aren’t the best option for my super sensitive body chemistry, and that I work best in positions that provide boundaries that I wouldn’t normally observe on my own.

Let me tell you a little more about that.  Instruction at Lindamood-Bell is broken into hourly segments. Most of our students come in for four hours a day.  Each hour they receive 55 minutes of instruction followed by a five-minute break. The instruction — 55 minutes of highly focused cognitive work — is tiring. Our students work hard, and so do our clinicians! Because of this, everyone stops once an hour to take a break, get a snack, go for a walk, use the bathroom, play a game, juggle, laugh, or otherwise rest from the intense work of instruction. Likewise, once in the morning and once in the afternoon, everyone stops for a fifteen-minute break. Often during these longer breaks, we celebrate student accomplishments, have a group treat like ice cream, or engage in group play like the center-wide nerf gun war we had recently. Everyone works hard; everyone takes breaks. It is required.

This is not a rhythm I fall into on my own, but I’m learning from it.

This very healthy rhythm of work and rest is further emphasized by the expectation that employees are only to work while on the clock. For the first time in decades, I punch a clock before I meet with a student, answer a question, or even reply to an email! Last weekend, while on a short vacation with my husband, I logged into my work email and quickly replied to a question.  Not long after that, my supervisor emailed me and said, “Thank you for the response, now STOP CHECKING YOUR WORK EMAIL WHILE YOU ARE ON VACATION!”  I chuckled to myself,  logged out, and walked down to the beach. This position requires that I work while I’m at work and rest when I’m not. That’s a good rhythm for me, too.

The boundaries of my work environment make it a healthy place for me to work, and so does the climate. Because most of our students have experienced multiple educational roadblocks and frustrations, it is critical that we provide a positive climate. All day long we praise, give rewards, and slap high fives. Each time a student responds to a question, he receives a “good job” or a “great try”. If she masters something that has been tricky, bells ring and the whole center applauds. Instructors get celebrated, too!  If one staff member sees another staff member do something great, he writes it down, points it out, and gives recognition.  All day long, we work hard to create a culture that celebrates individual effort and achievement. We smile, we laugh, and we cheer.

This, too, is not natural for me.  I tend to analyze, criticize, and strategize. These skills have been necessary and useful in a variety of positions I’ve held, but they don’t necessarily build a positive culture. Rather, in isolation, they support a climate of striving and perfectionism. Anyone who’s lived in such a culture knows how stressful that can be. What I’ve learned though, is that I can quickly adapt to a culture of positivity, support, and celebration. In fact, just like many students who have struggled in other learning environments, I thrive here. I am even finding that my skills of analysis, critical thinking, and strategizing are welcome, as long as they are tempered by compassion. And, I’m remembering that compassion comes naturally to me, too.

Yes; this position seems to be a good fit for me, but will I be able to sustain these good feelings while working 8 to 5, Monday through Friday?  I’m not sure, but I hope so. It seems that I’m learning at least as much as my students are.

Let the favor of the Lord our God be upon us,
    and establish the work of our hands

Psalm 90:17

My Sweet Experience, re-visit

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

How the Health are You?

A friend of mine used to ask me this every time she saw me. It made me laugh.  I was just a kid, and I liked how she, an adult, was playing with language and ‘getting away with’ saying a ‘bad word’.

Who knew, way back then, that questions of health would one day dominate my life?  Who knew that I would spend years trying to discover what the health is wrong with me and how I can remedy the problem or at least minimize its effects?

But guys, I have relatively good news!  After five years of trial and error — testing, medication, treatment, side effects, etc. — we have discovered a strategy that, at least for now, is reducing my symptoms!

Let me pause here and give my disclaimer that every body is different, no one treatment works the same for every person, and certainly this is just my story.  I am in no way suggesting that your strategy for managing your health is inappropriate or that you should alter it in any way.  

I haven’t written about my health since last summer when I was doing a trial of Cosentyx.  After a over a year of no medical intervention for my illness, which had been labelled psoriatic arthritis and/or fibromyalgia, I had gone to a new rheumatologist who, at least initially, promised hope for reduced pain, better mobility, and less fatigue.  She felt that Cosentyx was a miracle drug and that I would certainly see dramatic results perhaps even with the first dose.  I was so excited!  After four years of pain and fatigue that limited my everyday life, I was looking forward to ‘getting back to normal’!

Well, I did see a dramatic effect, but it was not the one I was looking for.  Cosentyx made me an emotional wreck — I mean a serious emotional wreck.  I could barely function, particularly when the doses were back-to-back in the initial ‘loading’ period.  I was irrational, depressed, impulsive, and downright mean.   Nevertheless, I continued through that initial phase hoping to strike the promised gold; it never surfaced.  I stayed on Cosentyx for six months with no real improvement.

My doctor, suspecting a different diagnosis of degenerative arthritis, next recommended that I visit a pain management clinic.  I have been very opposed to this from the start.  Remember that prior to this illness, I had been a pretty avid runner for about 10 years.  I had run 5-6 days a week and completed two half-marathons.  I was in pretty great shape up until I started noticing joint pain and extreme fatigue.  I did not want to resign myself to a life of pain meds — I wanted to get better!  I wanted to find the source of the problem, fix it, and get back to my life!  My previous doctor had also recommended pain management; that’s when I had decided to try  homeopathy.  Homeopathy offered me hope and agency but no true change.

Anyway, I digress.  Last fall, when my current rheumatologist recommended I go to the pain management clinic, she suggested I try a steroid shot in my sacroiliac joint — the biggest source of my pain.  This sounded different to me.  She was not suggesting that I take NSAIDS for the rest of my life or that I take opioids or some other form of pain medication.  She was just suggesting a steroid injection.  I was willing to give that  a try.

With the very first injection I noticed a change — I didn’t have such a high degree of pain or such dramatic fatigue.  In fact, I was moving around more easily and having more energy.  After my second injection a month later, my chiropractor and physical therapist both noticed structural differences — my spine adjusted more easily, my muscles seemed more relaxed, and my posture was more erect.  After the third injection just two weeks ago, I notice that I have more endurance as I move through my days and I sleep more comfortably at night.

For the first time in five years, I have noticed a significant change in my ability to function!

Now, I will say that I am cautious in celebration.  First, I am only two and a half months into this treatment.  I do not know how long it will last.  In fact, after the third shot, the medical team said that I should call them “as needed”.  What does that mean?  Will my relief last a month? Two months?  a year?  What I am told is that everyone is different.  Some people get relief for months; some get relief for much longer.

The second reason that I am cautious is that I do not want to go back to my soldiering ways.  My illness has helped me, through trial and error, find a better pace for my life. I don’t try to cram twenty hours of living into every day any more.  I find time for work, but I also find time to rest.  I have built boundaries into my life that never existed before. I have more time with my husband, more availability for my kids and grandkids, and more margin to manage the unexpected stuff that arises in life.  I don’t want to lose this balance as my health improves.

I still believe that this journey of the last five years has been a lesson designed uniquely for me.  The way I was living my life previous to this illness was a path of my own making — I was kicking butts and taking names. I was not caring for the others in my life or, least of all, myself.  I don’t want to lose what I’ve learned in any level of recovery.

So, for now, I will continue the practices that have sustained me this far:

  •  A commitment to daily Scripture reading — this has been a calming anchor to my days.  I listen to a daily ‘dose’ on a YouVersion Bible reading plan every morning as I move through my routine.  It’s a small thing that makes a huge difference.
  • Regular visits with my chiropractor and physical therapist who have been my coaches and supporters for going on three years now.  I can’t say enough good about these two.
  • Yoga, a healthful eating regimen, and walking.  Daily intentional care of my physical body helps maintain both my physical and emotional health.
  • Writing — putting my thinking on a page with a commitment to total transparency has been an accountability that contributes to my emotional and physical health.
  • Psychological therapy — a once a week discussion with a trained professional who helps me sort out the healthy and unhealthy messages I am giving myself.  I am always surprised by the interrelationship between physical and mental health; it cannot be overstated.
  • A renewed commitment to prayer — this seems to be the hardest for me.  I am so used to muscling through and finding my own solutions.  Turning to prayer is a highly intentional act right now.  I am praying that it becomes more automatic over time.

I sometimes joke that taking care of myself is a part-time job.  It takes a lot of effort.  However, I have learned that if I have any hope of caring for the people I love or for being effective with my students, I have got to oxygenate myself first.  It’s not selfish; it’s a healthy practice that enables me to do the things I love.  It honors the Creator to care for what He created.

Jeremiah 17:14

Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.

You’d be amazed

You’d be amazed to know what happens when you sit down, shut up, and pay attention.

You notice things.  You finish writing a confessional blog about sitting with your grief, walk a few steps to your bed, lie down, open the book you have been reading on and off for over six months, and the very next words that you read are these:

Maybe grieving over plans changed is part of the plan to change us.*

Then, after sleeping for just a few hours, you hop in your car and turn on a podcast** to hear two women discussing shame and vulnerability.  You’re stunned because as they share their failures,  you feel somehow drawn into the discussion like you’re a member of the sisterhood of the fallen.

As the podcast finishes, you arrive at a restaurant to meet a  woman for lunch — someone you’ve never met before — she offhandedly mentions her struggle with autoimmune disease,  and before you know it, you’re choking out something like, “It’s so frustrating because I like to be a positive fun person, but right now, I don’t feel like that person.”

Then, a couple hours later, in a session with your therapist, you hear yourself recounting the most mortifying moments of your week when your child brought her friend to your house ahead of schedule to ‘surprise you’ and you made them leave so that you could finish cleaning and you weren’t joking. When the therapist says, “so we’re going to work on your need to be in control and your ability to be kind to yourself,” you sit in stunned amazement that 1) you actually confessed the story out loud and, 2) she gets you and this is only the second time you’ve spoken to her.

You leave your session, drive through Starbucks to buy a tall lemonade before picking up your four-year-old great nephew and taking him home for dinner.  After dinner you chat about serious things like whether or not a four-year-old can actually run faster than a race car, then hear your nephew, the four-year-old’s daddy, say “you are such a blessing to us” as he walks you to your car.

You drive home, wiping tears off your cheeks because you are overwhelmed at the richness of the day, walk into your house, plop down on a chair next to your husband, and try to give him some snippets that can somehow convey the way God spoke to you all day long, but you are so exhausted from the last twenty-four hours that you can barely make coherent sentences.

After a total knock-out sleep, you wake up and eat a bowl of oatmeal on the way to your physical therapy appointment. Then, the angel who is your therapist places her hands directly on the exact spots that have been screaming for attention.  She just barely touches you, but the warmth and intention radiating from her hands moves from your skin through your joints and directly into your heart.

It’s several hours later, after you have baked banana bread, prepared chicken curry, drank tea with a friend, choked up at the opening chapel service on your school’s campus, talked with three out of four of your children, made major financial decisions with your husband, cried over a minor miracle, started crocheting a new afghan, and laughed at the Weekend Update, when you realize that for the last two days God has been placing His hands directly on the exact spots that have been screaming for attention.  He has just barely touched them, but the warmth and intention radiating from His hands has moved directly into your heart.

That’s what happens when you sit down, shut up, and pay attention.

I think I might try sitting with this a little longer.

Blessed are those who mourn, for they will be comforted.

Matthew 5:4

*Ann Voskamp, The Broken Way.

** Jen Hatmaker’s For the Love, “Episode 2: Brenae Brown”

Sitting with it

I literally have to sit here with it.

I would rather run from it, but I don’t have that option any more. I have to sit with it.

In my soldiering years, I was continually in motion. Dawn ’til dark.  I was picking up, dropping off, buying, cooking, cleaning, planning, teaching, grading, and when I could squeeze it in, I was literally running.  Though I was acutely aware that I had four other humans living in the house with me (who else was I picking up, dropping off, buying, cooking, and cleaning for?), I rarely sat still very long to actually look at them, listen to them, watch them, hear them.

I have to sit with that now.  I’d much rather be running.

When one got migraines, went off to school, and then developed an eating disorder, I didn’t stop what I was doing.  No.  I drove to emergency rooms, packed boxes, drove miles, dropped off, made appointments, picked up, and kept moving.

When another joined the military and started jumping out of planes, I didn’t sit down and think about what that meant.  No.  I bought supplies, cooked farewell dinners, drove to a bus, dropped off, and kept moving. I can’t even remember if I wrote letters.

When another was brutally assaulted, I was so busy moving I didn’t even realize it had happened. For almost two years. And when I finally found out, still, I didn’t stop what I was doing, sit down, and grieve.  No. I grabbed broken pieces, dropped them in the passenger seat of the car, and drove them to someone who I thought could put them back together again.  And I kept on moving.

I have to sit with that now.

I didn’t choose this.

No.  Even when disease started crawling into my joints, I tried to keep moving.  I trudged through long days trying to manage responsibilities and ended up collapsing at home at the end of each day.  All my good hours were spent in hot pursuit while my hours at home, with the ones who needed me most, were spent in a daze of pain and fatigue.

It’s been over three years since I admitted the need for change. In those three years I have tried again and again to return to my former ways, but I can not. This disease is literally slowing me, sitting me down, and forcing me to face the things that I have not wanted to face.  It’s forcing me to learn new ways.  And, still, I resist.

I try, futilely, to keep busy.  I have crocheted a hundred scarves, hats, afghans.  I have put together probably a million puzzle pieces. I have read thousands of pages of print.

But, without fail, fatigue comes, and I must stop the busy-ness and turn to stillness. And even when I am exhausted, as I am right now, it’s as though I fight against rest.

The past several nights I have limped to my room lugging heated packs that I drape on my neck, hips, back after I’ve awkwardly lowered myself into bed.  Then begins the battle of shifting and moaning and repositioning that sometimes lasts several minutes but tonight lasted so long that all the images kept playing out over and over on the HD screen that is my imagination. Finally I groaned myself out of bed.

Come on, Kristin. Sit with it.  Admit that you missed so much. Acknowledge that the ones you love have hurts that you haven’t wanted to see. Grieve that. Cry.

Acknowledge that you couldn’t do it all.  You couldn’t soothe all the hurts.  You sometimes didn’t even try. You can’t undo what was done.

And the hurts keep coming.  The car needs servicing. The dog is aging and ill. A laptop isn’t working. Can’t a girl get relief from some of this pain?

And then comes the realization that the physical pain is a symbol. A tool.  A gift.

Man, I hate to admit that it’s a gift.  But without it, I would still be running. I would still be accumulating regret.

The illness hasn’t solved my problems, but it has revealed some.

And as I see them, I am finally taking the time to sit with them and cry. And lately my tears seem to have no end. They keep coming as though they just have been waiting for the opportunity.

I’m trying, really trying, to sit with that.  I believe the healing will come in the grieving. So, I’m going to take some time to grieve.  Soldiering me wants to schedule the grieving for Mondays at 10am for the next three weeks and be done with it.  Sitting still me isn’t in a rush.

I’m trying to sit with that, too.

There is a balm in Gilead to make the wounded whole;
There is a balm in Gilead to heal the sin sick soul.

Trials

One month without writing. I had every intention of jumping back into routines.  Fresh from my time away at the beginning of the summer, I wrote three days in a row, and then the whirlwind — the 5-week summer course I taught, visits from all of our kids and our grandbaby, and a full-family excursion to see both sides of the family.  I might’ve still managed to write a little, but in the midst of all that activity, I did a new medication trial.

My new rheumatologist, who thankfully reasserted my psoriatic arthritis diagnosis, said I should try Cosentyx.  “It’s a relatively new drug,” she said, “and it has helped a lot of people with psoriatic arthritis.”

“What’s the down side?” I asked.

“Nothing!” she assured me.

Skeptical, I did my own research. I googled and queried online groups.  It seemed that everyone agreed with my doctor — the risks and side effects were minimal.

Mm-hmm.

I wish I would’ve gotten a rash. Or stomach pain.  I did get what other patients call, “a temporary spike in symptoms,” but I also had another, more bizarre reaction.

Cosentyx is injectable.  Once a week for five weeks, you use a syringe or a ‘pen’ to give yourself a 150mg dose of this drug. I’m nothing if not dutiful, so I started the day I got home from grading the AP exam.  One quick click in the right thigh.  I didn’t notice anything until the next day when around 4pm I felt like I needed to lie down and be done for the day.  I wasn’t too worried;  I am often tired.  It is not unusual for me to be in my pajamas by 7pm, so I did what my body told me and rested for the next couple of days. Then I was back to normal.

The next Sunday, I did one quick click in the left thigh.  Again, nothing immediate, but the next morning, I got out of bed barking orders, complaining, and overreacting to every little nothing.  Ok, still, I wasn’t too concerned.  I’m known to be a bit crabby, and this ‘mood’, like others I’ve had in the past, lasted about 48 hours and then seemed to wane.

Next Sunday, next click — this time in the belly.  It was the Fourth of July weekend. And I was starting to see a pattern.  I had to teach on Monday, July 3rd for the summer program I was part of.  I got up and grumbled around the house, complaining that I was the only one who had to work, the only one who cleaned up around the house, blah, blah, blah.  My family observed me from afar.  They were starting to catch on, too.  I barely made it through my class.  I was not interested in being there, neither were my students.  I went home and barked at my family and put myself to bed early.  The next day, some friends invited us over to their pool.  I agreed to go for the sake of my family.  I figured I would be less aggressive if I was in front of witnesses. And, these were close friends who were aware of my health issues and also aware of the new drug.  They were champs. They distracted me and fed me and my family.  True heroes.

Next Sunday, next click — the other side of the belly. Again, Sunday night was fine, but Monday morning I was already in a funk when my husband called me from his annual physical to tell me that he had to go to the ER for an EKG.  I rallied the troops — I sent my kids to him while I readied myself to teach and pushed pause on my emotions.  I transitioned to full soldier mode when he called again and said he had to have a heart catheterization right away.  The next twenty-four hours, which had been the hardest on this med in the previous weeks, were a whirlwind of distraction.  My husband’s tests eliminated heart disease and any blockages and suggested the need for my husband to go on — wait for it — a medication trial.  (He has had not further symptoms, thankfully.) By the time he was home from the hospital, it was Tuesday night and I was almost back to normal.

Next Sunday, next click — back to the thigh, but this time, we had a house full of visiting family.  I had no issues on Sunday night.  Maybe I would be ok.  After all, during the previous week with the medical distraction, I had kept my rage in check.  Certainly I would be able to control my tongue in front of house guests.  Nevertheless I warned them in advance while hoping for the best.

It came out of nowhere.  Unbridled venom.  I spewed.  Then the backlash of remorse and embarrassment.  Apologies, and then, wham! The second wave.  I felt desperate.  I mumbled explanations and left the house.  I was going to isolate myself until the storm passed.  I spent the next six hours alone.  I had a book, but I couldn’t read.  I had my laptop, but I couldn’t write.  My mind was swirling frantically.  I worried over every decision past, present, future.  I cried.  I raged.  I fumed.  It was terrible.  After dark, I slithered back home, showered, and put myself to bed.

The next morning, we attended a funeral for a friend where tears released any remaining emotions, then I taught my class.  Afterward, I made a meal, and by dinner time I was able to join the family around the table.  I was still careful to speak very few words for fear of saying something barbed or pointed.

By the next day, Wednesday, I was pretty much back to normal.

I am now two weeks away from the last dose.  And two weeks away from the next dose. After the five loading doses, I switch to once-a-month injections.  I’ve called my doctor. She’s “never heard of” this type of reaction.  I contacted the manufacturer.  They are “following” my case.  My doctor wants me to continue the course, if I can, to see if Cosentyx will eventually help me.

That’s the other kicker.  This med does not give immediate relief from pain, fatigue, or psoriasis.  People have varied results.  Some have noticed improvement after the loading doses.  Some after the third month.  Some after the — gulp — eighth month.

Is it worth it?  I don’t know, because right now I don’t have any relief.  None.  I had, as I mentioned, a spike in my psoriasis, pain, and fatigue. That, coupled with the bizarre emotional reaction, is what I have noticed as a result of this medication.

Nevertheless, I am going to press on.  I am going to take the next dose and not plan anything for the two days after the injection.  We are going to watch and wait.

Why? Because I am still hopeful that something is going to work.  I still believe that at fifty-one years of age I should be able to live a full life.  I still want to teach during the day and go out to dinner with friends in the evening.  I want to be able to have Bible study with the girls in the morning, teach my classes, and then be conscious for dinner with my husband.  I am hopeful that I will be able to lie down at night and sleep without groaning every time I have to reposition myself.

It feels a bit selfish when I put it like that, I guess.  I mean, psoriatic arthritis is not life-threatening.  It is only life-altering.  And, as I have mentioned in this blog, my life did need altering.  I am not angry that I have this disease, but I do want to pursue a path to healing. And, I think, for me, the healing may need to come slowly so that I don’t abandon all the lessons I have learned in this chapter.

 

 

Romans 12:12

Be joyful in hope, patient in affliction, faithful in prayer.