In January of 2013, I was dragged into a role that I never expected.

When hospital stays got long I would take my camera and look for something interesting. The textures in this wall and bench caught my eye.

Today I talked with a woman who was researching an article about how living with chronic pain affects a relationship. I had asked her if she was interested in someone who had lived with someone in chronic pain. It brought up a lot of feelings in me from the last five and a half years. So, I thought I’d share a little of it with you.

Our marriage, like most, had many ups and downs. In 2012 we were at a high point. Starting in August Mike had been being treated for what they thought was a sinus infection. It had progressed into his eyes and ears to the point that he couldn’t see on New Year’s Day in 2013.

He went to see the local optometrist and his local provider. More antibiotics that didn’t help. Then on January 25 the nurse practitioner that he was seeing referred him on to the regional hospital in Hays.

Things look different near Houston in December than they do in Kansas. Dew on this flower on a December morning.

I went to the clinic to pick him up and we drove to the school to tell our sixth grader that we were going to Hays and would let him know what he was to do if we weren’t home when school was out.

Mike’s eye was swollen shut and his ears were swollen and red. He also had inflammation in other places. They put him on IV antibiotics and steroids and called in an ophthalmologist and Ear, Nose, and Throat specialist.

The next morning the ENT told him he had relapsing polychondritis. This is a rare auto-immune disease that affects the cartilage. There were no rheumatologists near, but we did find one that came to Colby.

The next fall/winter he started having pain in his esophagus. So, he had an EGD (they put a camera down his esophagus) to see why it was painful. He had an ulcer, but they didn’t ever figure out what caused it.

In the summer of 2014, his hemoglobin started to drop. So, another EGD and colonoscopy to see if he was bleeding somewhere. He wasn’t. At that point, I asked the doctor if he thought we should go somewhere else.

Textures in the wall outside Mike’s hospital room at KU Med Center. They made me wonder about the age of the building.

This is how our medical trek that lasted five and a half years started. We traveled to Denver, Mayo Clinic in Rochester, MN, KU Med Center in Kansas City, KS, and MD Anderson in Houston, TX with stops at our local and regional hospitals and clinics.

We saw the good, the bad, and the ugly in health care. And after having my full-time job combined with another full-time job I turned down the “promotion” and became a full-time caregiver. I also enrolled in the two-year program to become an Equine Gestalt Coach.

The EGC program put me in the best place I could be mentally to deal with my role as a caregiver. It also put me in the best emotional place for my next learning experiences. Being diagnosed with breast cancer and losing my husband.

Even though I was pulled into being a caregiver reluctantly I wouldn’t have wanted to miss The Dance.

Onward! Fatigue

Make a Connection in the comments below.