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.
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.