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The signs of changing times. I have written about my rare blood disorder, Essential Thrombocythemia in the past. Recently, my doctor at Ochsner in New Orleans spoke to us about starting drug therapy. My husband and I had always discussed that when we reached this point, we would seek out a second opinion.

After the appointment in January with my doctor, I began to research the blood disorder in order to find the best hospital and doctors with which to consult. There were four hospitals that are doing research in this area, John Hopkins, Mayo Clinic (New York), Mayo Clinic (Florida) and the Cleveland Clinic. Jacksonville was the closest of all of the hospitals and in April we traveled to Florida for an appointment with a doctor.

We were really impressed with the campus. The campus is in fact so large that had our hotel not had a shuttle, I fear we would still be trying to locate the correct building. The volunteers, staff, and doctors were the likes I’ve never experienced. There are volunteers who open your car door upon your arrival and point you in the right direction once you enter the building’s lobby and check-in area. No matter which way you are facing, you are facing a smiling, helpful face; someone trying to ease the anxiety. Check-in went smoothly as I had done most of it online. My appointment with the doctor went very well. He acknowledged that we had traveled quite far to see him and he wanted to make sure all of our questions were answered. He did not rush through the appointment. He sat and talked and produced research and statistics and made copies for us to take home as there was a lot of information to assimilate. As we left, he gave us his phone number in the event we had additional questions.

His diagnosis was Chronic Leukemia and he concurred with my doctor at Ochsner in his recommendation for drug therapy. So, I now have a new normal. Drugs, or more drugs, I should say. Also, Monday blood work for the next three months to monitor my platelet count and to make sure I do not become anemic. I’m not fond of needles and I’m not fond of Mondays. Mondays are for detoxing from a weekend overload of people. I’m an introvert and the chaos of constant chatter causes sensory overload.

So, here’s to Monday hospital bracelets and blood work.

 

https://mylifeonestoryatatime.com/2018/03/16/an-introverts-day-out-on-sensory-overload-who-needs-crack-cocaine-i-have-sugar/