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