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

A glimpse at autoimmunity

Almost five weeks ago I decided I should call my eye doctor.  I have recurring HSV (herpes) in my left eye, and I was sensing that a flare was brewing.  Since we were supposed to leave on vacation at the end of the week, I thought I should be seen by my cornea specialist before we left town.  He agreed.

He examined my eyes and said I looked ‘normal’ and should be fine on my vacation.  I exhaled,  thanked him for fitting me into his schedule, then went to see my integrative medicine specialist.  She, too, said I looked pretty good, but thought I could be doing even better.  She prescribed a supplement that would work on the cellular level to address the cause of my autoimmune difficulties.  Feeling hopeful, I  thanked her  and went to the chiropractor.

I know, I know.  Three docs in one day.  I try to schedule them this way because I don’t like going to the doctor, so if I have to go, I want to do them back-to-back and get it over with.

The chiropractor, too, said I looked good.  He adjusted my sacroiliac joint, my back, and my neck and sent me to “have a great vacation!”  I was all set.  I had the blessing of my docs; in two short days we would be on our way.

Because we were going to be gone for two weeks, I had three students to see that afternoon. Halfway through the second session, my student looked at me and said, “what’s wrong with your eye?”  Now, my eyes are typically a little red, so I wasn’t terribly alarmed, but he is a fourteen year old boy, so the fact that he noticed anything outside of himself was a little remarkable.  I went to the restroom and noticed that indeed my left eye was quite red and, as a matter of fact, somewhat painful.

This is how things go sometimes in the world of autoimmunity.  Just when you think you are doing fine, you aren’t.

The next morning I called Kellogg Eye Center and explained, yes, I was just seen yesterday, but a lot has changed in twenty-four hours.  My eye is flaming red and I can’t really open it when I’m outside because of the pain I am experiencing.  They got me right in.

It wasn’t HSV.  No.  It was a new malady — episcleritis, the inflammation of the lining of the eye.  The doctor thought that 800mg of ibuprofen three times a day should do the trick.  I balked at this because I have been off all anti-inflammatory meds and pain meds for several months.  However, she pressed me and said that it wouldn’t likely go away without them.

It took most of the weekend visiting with our granddaughter before my eye was feeling mostly better.  It was still a bit red, but I was determined to enjoy our vacation.  Yes, I had to wear glasses instead of contacts, but over the past four years that has become a fairly regular practice due to the herpes.

Feeling hopeful, we set off for our next location, Northport, MI.  The first two days there were fine. I kept taking my ibuprofen while we visited with friends and family in this beautiful area of Michigan.  However, the third morning, I woke around 5am with intense pain in my eye and through the upper left portion of my head.  I took my medication.  I applied a warm compress.  I stood in a warm shower.  Nothing gave me relief.  After a series of phone calls, my husband drove me forty minutes to see the nearest cornea specialist.

They got me right in!  In fact, within one hour I was seen by two doctors who agreed that I needed to be on prednisone — in both oral and eye drop form.  Because of my HSV, they also increased my anti-viral meds to prevent  an HSV flare.  I would have to come back the next day to make sure this treatment was working.

It worked well!  I got relief from the intense pain within the first hour!  The following day the doctor didn’t even recognize me because I had been so transformed from a writhing mass of pain into a functioning human.  Since episcleritis is so insidious, the treatment involves a very slow taper away from the prednisone. That is why, five weeks later, I am still on it.

Now let me tell you the blessings of prednisone.  I have had a significant increase in energy.  I enjoyed our vacation immensely!  What typically wears me out seemed routine. I not only enjoyed the beach and visiting with friends and family, I also had the energy to read late into the night.  Not only that, but within about a week of starting the prednisone, I was virtually pain free!  No eye pain, no hip pain, no neck pain. No pain! Anyone who lives with chronic illness will tell you that being pain-free is not really even a goal.  We have come to terms with the fact that we are going to have a certain level of pain at all times.  Being virtually pain-free for the last four weeks has been a blessing I never would have expected.

Prednisone does have its drawbacks though.  For one, especially in the beginning when the doses are high, sleep is difficult.  Some nights I barely slept at all.  Fortunately, I was not working during this time, so if I stayed up all night reading or putting together a puzzle, I could walk around zombie-like the next day with very little consequence.  Secondly, while on prednisone, people tend to put on weight.  Since autoimmune disease often leads to weight gain on its own, this additional challenge was not welcome.  I had been very disciplined to lose about six pounds over about four months only to have half of it come right back on.  Three pounds doesn’t sound like much, but my body takes it off very slowly.  Finally, prednisone regimens usually involve a decrease in dosage over time, so eventually, some of the benefits wear off.

Translation — I’m now on a mere fraction of the original dose.  I’m sleeping more easily, but the pain in my joints is starting to creep back in.  Not only that, I’m a little nervous that the episcleritis will come back.  Yesterday morning I woke with that familiar headache in the upper left portion of my head.  I took my meds and it mostly went away, but I wonder what will happen when I am off prednisone completely.

This is another feature of autoimmunity — trying to find the right treatment balance when the body is always changing.  One drug will manage a particular symptom or set of symptoms but will also cause a series of side effects.  Sometimes another drug is prescribed to manage those side effects.  Many people, like me, choose to limit/eliminate pharmaceuticals because of those side effects.  We might try diet, exercise, homeopathic remedies, or treatments such as physical therapy or chiropractic care to manage our symptoms.  Sometimes our strategies work for a season or even years. Often, they fall short and we have to try different options.

It’s a journey to be sure.  It can be time-consuming, frustrating, plan-changing, and life-altering.  Sometimes I get angry that I am living with this disease, but mostly I have accepted this as my reality.  And, weirdly enough, I am often thankful for its impact on my life.

In the past four years I have experienced a multitude of negative symptoms, but I have also had the blessing of slowing down. Slowing down has afforded me the opportunity to pay better attention to the people around me, to read more, to write more, to think more, to enjoy more.  It’s weird, but it’s good.

 

Romans 8:28

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.