Trying, again

 Taking this stroll down memory lane has made me develop a new appreciation for those with chronic illness. To me, I was just living with Crohn’s Disease and Colitis and did not realize the challenges such onsets provide while in their midst; I always felt like I was looking from the outside in and in many ways I was. At times I viewed life from a by-stander position because it was easier to deal with, however that left me never being fully engaged in the present and I overlooked many opportunities.

The saying is true: everyone is different, what works forever for one may not work forever with another. Eventually, I began having persistent biologics side effects, the first were minimal – adult acne, red/swollen face, blotchy skin, nothing serious. Months after however, new side effects began – swelling of body, fatigue, short term memory problems/cognitive challenges, mottled looking skin, much like I was “wearing a burgundy crochet sweater” – this is how the infusion nurse described me. These problems combined with stories I heard firsthand about long-term treatment led me to stop treatment.

Deciding this time in my life was going to be different, I chose to follow my dream of wanting to live near the seashore. I felt my life was spared and searching for the next step, I headed towards salt water. Dad says he has salt water in his veins, I do too; there is something about life, which is vividly magnified when close to the ocean, as if stepping into the water is like stepping into eternity. Facing the ocean is like facing life, no matter what baggage we have behind us onshore, the ocean will always be a calm constant in a world of chaos, giving heightened perspective or brief respites.

God gave me the strength to relocate, plus provided a job and a gracious couple to live with until I was on my feet again. I became acutely aware of the cognitive impairments after I began working again.  The customer service/data entry job required lots of recall; normally, taking notes did the trick for me to learn a job and once learned, I had no problems. This time however there was a major problem, much to my chagrin and that of my trainer.

I took lots of notes and was ok for a day or two, following the sequence of my notes. However, on a Friday I would leave work, have two days without repetitive entry, and by Monday I was a complete blank as to how to perform my job. If I had not recognized my own handwriting, I would have thought someone else took the notes for I had no recall. I studied the notes over weekends, which did not help. As you can guess, I lost that job, and chose not to divulge that I thought my medication was the culprit, because that sounded like an excuse, plus, I abhor pity.

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