autoimmune disease

When All is Well, and It Hurts.

I feel better than I have felt in eight years.

Please don't miss the gravity of this simple statement.

I am at the closest place to remission I have ever been in the eight years I have lived with autoimmune disease, and it is a simultaneously sacred and scary place.

Since graduating from my master's program in May I have been thoroughly soaking up the wonder of being well. My husband and in-laws generously gave me an inflatable standup paddleboard as my graduation gift, something I have lusted after for years, and I've since spent most of my free days paddling on open waters, dwelling in the sun and fresh air and capacity of an unencumbered body.

I have been experiencing a season of nearly unparalleled freedom, and I have embraced it with my entire heart.

Embracing the joy of today comes with a willingness to accept the grief of tomorrow. Because of some life decisions my husband and I are making, I know this season of wellness could end in a couple months. This season of wellness is quite possibly limited. For several weeks I have chosen to dwell in the joy of what is rather than the impending anguish of what is to come. There is wisdom there, and I am proud I have allowed myself the space to dwell in the present. And yet, as I drove across town last night, I remembered the soft tap of my soul and the Lord: "you need space for sadness, too." Praying, the question I knew I needed to sit with was, "What do you need to grieve?"

What do you need to grieve?

I can't say I completely know the answer to my question. Through attending to my story through the tool of the Enneagram, I know I need to grieve several places where I historically felt unseen and misunderstood, and where my emotional world was invalidated from childhood through the present. I also know I need to grieve some painful experiences from graduate school.

But, today as I stepped on the bathroom scale for the first time in a month and realized I had lost ten pounds, I stopped. The ten pounds in many senses does not matter, but what it symbolizes does. Ten pounds symbolizes activity, life, movement, and change--an effortless physical freedom I have not known since I was a 21 year old.

For a moment I danced my naked body, rejoicing at what I saw in the mirror: stronger legs and arms, tone where tone has been lacking, the curve and shape of my former self. I danced to the thrilling reward of days in sunshine with a moving body and an uninhibited heart. 

But plans. Planning means choosing the substance of our days. And in the late summer and early fall, that means choosing the probability of a smaller, more holistically-arduous existence. This is a hard concept to relate with or without details (some of which I, frankly, am just not ready to share). Outside of being me, it is easy for others to simply think that since I cannot know what the future holds, I should only hold out hope for it being better than I imagine. But I do know my body, and I do know how, like a well-oiled machine, my body needs particular ingredients in order to thrive. Take one of those ingredients away for even a week, and it screams in pain and refuses to move without great struggle. Thus, I hold out hope for the potentiality of a better future than I can imagine, and I live in the reality of knowing impending pain is both possible and probable. 

I will not borrow trouble, but I also will listen to the voice of the Lord telling me to attend to the grief in my heart. I will hope. I will thrive. I will glide across the lakes of Colorado with joy illuminating my very presence. And I will bring stillness to my heart, strengthening my soul for whatever lies ahead. 

When all is well, and it hurts, I simply have to be present to it all. The joy of my season in life right now is so expansive it almost physically hurts at times. And the sorrow of now in relation to where I have been and where I might be headed hurts as well. But if there is anything the past eight years of dwelling with God in sickness has taught me, it is that joy and sorrow are necessary friends. One cannot survive without the other, and I will accommodate them both.

Developing and managing a second disease requires bravery.

This past Fall I felt sicker than I have ever been in my life. Fatigue covered my days like heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class and see my therapy clients, but otherwise spent the rest of my waking hours in bed.

It was such a confusing season, largely because fatigue is a big part of my autoimmune disease (Ankylosing Spondylitis). I'm used to debilitating fatigue, but this was worse. Oddly, my joints weren't hurting, and usually my fatigue corresponds with intense joint pain. When I start to feel sick, my first thought is that I am in a flare-up of my disease. It's usually that simple. When something new hurts--like my eye--I figure, AS can affect that too. (Don't worry, I see a doctor when odd pains crop up!) When that's not the cause, I start thinking I've caught an infection or a virus, because being on multiple immunosuppressant drug therapies definitely makes me very susceptible to infections. But it wasn't that.

Days of nausea and fatigue turned to weeks. And then weeks turned to months. And after every doctor visit and each new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why.

My rheumatologist faithfully searched out the cause of my mystery illness, determined to see me well. Both her instincts and mine told us this was not AS, and likely not rheumatologic. And when blood tests, CT scans, and biopsies came back normal, she tested one more thing. "It's a far-off chance that it's this, and I've never seen it in my entire career, but let's check it anyway," she said.

The day she called with my test results, I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know that normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help, mean life can get better than the hell you are living. Almost no one understands why getting bad test results is such good news except the determined and courageous patients who have not given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer.

My doctor informed me that during my cosyntropin stimulation test, my adrenal glands produced virtually no cortisol, which meant that I had Adrenal Insufficiency. In the onslaught of google research that commenced after that I learned that all the things I had been experiencing, including depression, were symptoms. I needed to start steroid therapy to replace the cortisol my body wasn't able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition has not entirely stabilized, and we still are determining the cause of my Secondary Adrenal Insufficiency.

Developing an additional condition has meant seeing more doctors, specifically an Endocrinologist, having even more regular blood work, and sucking up the fact that I'm dependent on steroids daily to function. (Really, to live. Without steroids, Adrenal Insufficiency patients can go into life-threatening adrenal crisis.) 

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for  Anchor for the Soul .

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for Anchor for the Soul.

Developing and managing a second disease requires bravery. About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases. (Via Maedica) And that's not counting co-morbid medical conditions outside of autoimmune disease that can occur, like mine. The reality is, many of us have or will develop a second diagnosis. And that diagnosis will bring new challenges and opportunities to process, grieve, and hope for the better life we all want. Six months after learning about my new condition, this is what I have learned:

1. Listen to Your Body. When we are attuned to our bodies, we often can know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need.

2. Value Your Health. The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor(s). 

3. Let Yourself Grieve. Giving yourself the space to grieve your illnesses is not a pity-party. Even though you are used to being sick, it's a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That's what I did.) 

Bravely giving ourselves the space to listen to our bodies, value our health and existence, and grieve the assaults to that existence empowers us to find joy in pain, energy in fatigue, and stability in sickness. Whether you have one diagnosis, or two, or five, I hope you'll be brave and value yourself today.