The weather in Kansas can be like a roller coaster. Two days ago, it was a glorious sunny day and in the 60s. Not bad for the last day of December. Two days before that we had rain, snow, and wind. Today we are in a winter weather advisory with freezing rain expected.
Does your life feel like this? Everything going up, you can hear the cogs carrying you along. Then you reach a pinnacle, and it comes crashing down with all the twists and turns.
For five and a half years I lived this roller coaster. When Mike was diagnosed with the rare auto-immune disease relapsing polychondritis. I felt that an auto-immune disease could be managed. And I might have been right had he not had so many complications.
Nine months later he was having pain in his esophagus. He had severe pain and would have trouble eating. He had two EGDs done to see what was going on. I expected the first doctor to reveal something to do with the auto-immune process. What he told me was that he didn’t have cancer. That hadn’t even been on my radar. He was sent to a surgeon in Denver. They never did find anything that caused his pain and it was alleviated for a while.
About six months after that he became severely anemic. He had another EGD and a colonoscopy to see if he was bleeding – he wasn’t. Our next trip was to the Mayo Clinic in Rochester, MN to see a hematologist. He ran some tests and had him adjust his medication. He also got him in to see a rheumatologist. I later found out he was one of the few doctors that specialized in relapsing polychondritis. He recommended a rheumatologist at KU Med Center. A few weeks after being at Mayo Clinic Mike had his first blood transfusion of about 30 that he would have.
I had a full-time job as the tourism director in Oakley that I started shortly after his initial diagnosis. We had spent Wednesday driving to Rochester, seen doctors on Thursday and Friday, and had broken the trip home into two days with some sightseeing along the way. I took the Monday after off to rest. That should have been enough I thought. But I spent the next two days going through the motions. It didn’t dawn on me until Thursday that I was emotionally dehydrated. I had given my all to that trip.
We made our first trip to KU Med Center that fall. He saw the rheumatologist; he was referred to a hematologist and a pulmonologist. These doctors would become his core clinical team. And things went along smoothly – until they didn’t.
We drove to KU Med Center six times in eight weeks during November and December of that year. This is a 350-mile trip one way. They were trying to find cancer because the nurse practitioner here told him he had lung cancer based on a chest CT. They would find something, set up a test the next week, and it would be gone. Finally, he was referred to the thoracic surgeon we would get to know well. He had a PET scan and was the surgeon’s last patient of the day. The surgeon said that he had been considering two different actions but after reviewing the PET scan results, he felt that neither was warranted. We went home to spend Christmas and New Year at home returning on January 5 for a chest CT.
How do you handle when your life is like a roller coaster? For the first two years of Mike’s illness, I powered through. I felt like I needed to be strong for everyone – our boys, my parents, his sister, and everyone in town. Then I found the Touched By A Horse® Equine Gestalt Coaching Method® program and I learned a better way.
Join me for the New Beginnings Vision Series and see how your life can be changed. Click here for more information.
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Onward!
