The Writer in the Rheum: Fighting to Retain My Identity with Chronic Disease

For some reason, I'm shy about discussing my treatment choices in public forums such as Facebook or my blog. I believe treatment choices are highly personal, and tend to be controversial. I have friends and family who believe only in natural/alternative treatments, I have friends and family who believe only in medical treatments, and I have friends and family who believe in a combination, or integrative, approach.

Thankfully, I also have some friends and family who believe that the person effected should be the person to make the decisions about their own care, regardless of what they personally would do.

I still don't feel comfortable writing about my choices in regard to my treatment plan, but maybe someday I will. What I would like to say, is that a couple months ago I switched things up significantly, and about nine days ago, I started feeling better.

I have said many times that no matter how much pain I'm dealing with, I want to choose not to suffer. I believed in that concept strongly, but have to admit that the last month or two has been rough. My quality of life was shot, my pain was raging out of control, and morning stiffness? Let's just say that on Thanksgiving, it took about the same length of time to "thaw out" my spine, as most people spend thawing out their frozen turkeys. I was in a place that felt unending. I felt almost physically sequestered from my own life and my family. I wasn't enjoying my life, and I was clinging to the concept of hope -- that maybe something could still turn my life around. But, to be honest, I wasn't sure it was out there.

My spinal pain was nearly unbearable. I woke every morning feeling as if someone had broken my back in the night. I could barely move, I couldn't bend, and the pain was reaching the upper limits of my experience.

I spent a great deal of time with a question rattling around through the haze in my brain:

Is there a writer in the rheum?

I am a writer. Other than being a mother, it's my highest calling, highest pleasure, and how I identify myself.

I was losing my ability to hang onto the dream of ever finishing my book, of ever writing articles again, of even getting back to this blog. I long to inspire others to face their lives with creativity, positivity, and an authentic lifestyle of thanksgiving.

But I was drowning. I have spent months fighting to stay afloat, fighting not to go under.

I felt I was in a cage of severe pain, and it was becoming harder and harder to function and interact.

I was afraid that I was losing my fight to maintain any quality of life, and that my dream of finishing my book, and starting new projects, would be unattainable. I was afraid that with a rheumatic disease raging out of control, my "writer" self would be lost.

I really don't know how much more I could have endured without some part of me slipping away forever; without losing my smile, my ability to be a friend or a good mother, or a writer.

I'm grateful beyond words (and as I've said here, words are kind of my thing) to say that I'm doing better. Just as I didn't know how to fight my way to the surface one more time, I'm doing better. I don't know if it's the change in treatment plan, or if I was in a brutal flare-up that is ending, but whatever the cause, I am unspeakably relieved.

A week ago we went to a Christmas concert. During intermission, I walked with my six year-old up and down three flights of stairs. I couldn't have done that before. I'm still excessively tired, I'm still running low-grade fevers frequently, and pain is still present, but the glass wall separating me from my life and my family has shattered down. I can touch them now, I can interact again, and my mind is starting to awaken.

I'm more committed than ever to write.

Because, you see, this is my story. It's mine and it's true. And maybe some part of my difficult reality will ease some hurting part in you.

Please don't give up on your dreams and fighting for your best life. I made a choice to fight, and I'm so grateful to be emerging from this dark place.