My Journey with Chronic Illness

I am no stranger to illness. If you’re reading this I’m guessing that you aren’t either. I’ve experienced a life-threatening cancer diagnosis and more recently a treatable-but-not-curable autoimmune diagnosis.  Living with chronic illness is a journey. It’s a journey from the luxury of perfect health to the acceptance of long-term disease.   

But more importantly, the journey is about living, with purpose, one moment at a time. 

When I was diagnosed with cancer, I waited way too long to seek support. Why? I’m damned stubborn. I thought I could handle it on my own.  But I felt alone.  I wanted to educate myself about my disease but I’d get lost reading information that I couldn’t understand or that terrified me.  I needed to learn how to live with new limitations and a lot of uncertainty.  I wanted to connect with people who were going through what I was.

Now I’m living with a new diagnosis, a rare autoimmune disease. I started this blog because I know how important it is to learn how to cope emotionally; to give and receive support from other people who understand; and to have information and resources that help me stay informed so that I can make the best decisions for my health.     

If you are living with an autoimmune condition, chronic disease, or invisible illness I hope that this blog will inspire, support, educate and empower you to live and to live well.

My Story

In 2004 I was diagnosed with an aggressive subtype of Non-Hodgkin’s lymphoma, essentially a cancer of the immune system. I had children to raise.  People to love. Work to do. No one is ever equipped for combat when the war is a surprise.

I failed first line treatment, the standard chemotherapy protocol at that time.  Then I failed radiation – the lymphoma simply found other organs to invade. The last option was a stem cell transplant – a procedure where my stem cells were collected and reintroduced to my body after my entire immune system was obliterated with high-dose chemotherapy. What did I have to lose?

A Second Chance

The preparation for the transplant is referred to as salvage chemotherapy – which would be more aptly called “savage” chemotherapy. Really, it’s that brutal! But I failed that, too. My oncologist moved me to a different “cocktail” (a euphemism if ever there was one).  It got me close enough to remission to make the transplant an option. The odds were never in my favor, but it was successful. The transplant cured me, but not without side effects, late effects, long term effects and a giant helping of emotional fallout.  

A New Diagnosis

I edged my way back into a mostly normal life (on the surface, anyway).  In late 2016 I began to experience vague symptoms. Over the next year and a half I noticed a gradual but dramatic decline in my health. Figuring out what was wrong wasn’t easy. My road to diagnosis looked more like a labyrinth at times – full of intricate passages and blind alleys.

Finally, a team of doctors diagnosed me with a (rare!) autoimmune disease, dermatomyositis.  It’s an inflammatory myopathy (disorder of muscle tissue or muscles) characterized by chronic muscle inflammation, muscle weakness and skin involvement. It can be managed and treated but it cannot be cured.

What are the chances? According to the Myositis Association, there are between 1,600 and 3,200 new cases in the United States each year. It’s estimated that 50,000 to 75,000 people are living with this disease. That’s about 0.02% of the US population. No wonder I felt so alone! And how did I manage to get two serious diseases?

I live a little in the moment, like I’m standing at the edge. ~ Haim

Each of these illnesses has made me feel as though I am standing squarely at edge of a cliff. Physically, I am vulnerable – both literally and figuratively. But emotionally my footing is solid. So when I say that I’m living with chronic illness, I’ve chosen the word living on purpose. I’ve had to learn to live with it, and I’ve learned a lot.

I’ve learned gratitude. I’ve learned patience. I’ve learned to surrender. I’ve changed my priorities. I’ve begun to see all of the possibilities that had eluded me because I had trained myself to peer over the edge into the abyss instead of away from it. I have a second chance at life and I’m grateful to be here.

If you’re reading this, odds are that you may feel like you’re standing at the edge of the cliff, too. You might feel alone. And your disease may be mostly invisible to others. But it’s all too apparent to you. If you allow it, illness will steal your hope, your joy and your peace.

There is no going back. You can’t drive with your eyes fixed firmly on the rear view mirror.  You’re not going that way.  Here’s what I know for sure:  All we have is now. Right now. And the only way to live is to just live forward.

 I am not my disease.

I believe that the universe keeps nudging us in the right direction until we take the hint. I have always wanted to write.  I smile when I recognize that my diagnosis with a chronic illness was the catalyst that prompted me to make some changes in my life.

I’m so much more than my disease and its physical limitations.  I’m the mother of two fabulous young women. I adore dogs and believe everyone should have a pet – especially one in need of rescue.  I’m a Midwesterner in every way.  I value honesty, hard work, keeping things simple and indulging in comfort food.  

I’m a perfectionist and a skeptic.  I’m logical, practical, somewhat neurotic (that’s an understatement) and incredibly stubborn (that’s not an understatement).  I love to cook (and to eat). I read all of the time. I will forever argue that the 1980s was the best decade – with the best music (the hair, not so much)! 

I’m all of these things.  But most of all, I am resilient. And you know what?  So are you. Because sometimes it’s the only choice we have.