I continued sleeping sitting up on the sofa in the den when I got back from the hospital. It took a long time for me to digest food and I would taste my dinner at night. I started to question my self-description of reflux but I had no other way to describe what was happening. It didn’t feel like ‘heartburn’ although there were some nights when I had pain around my heart. When I coughed at night, I felt pain in my face. It was really hard to sleep.

During the day I tried my best to eat. I ate several small meals a day. I used a product called Osmolite as the base for smoothies. There was no pleasure in food and there hadn’t been for months.

I was using a product called Lax-A-Day to keep my bowels moving. My pediatrician friend dropped by after work to give me advice on getting control of my bowels again.

As directed, I went to see GP #3 to check in and have a ‘weigh-in’ on January 11. It wasn’t a warm and fuzzy appointment as I had stopped going to see him in the fall when he told me I was difficult and closed-minded because I didn’t want to take the drugs he wanted to prescribe for me.

[I was looking for a diagnosis before popping pills and I still didn't have one. He had a student observe my second appointment with him and told the student in front of me that I was depressed and losing weight because of my mother's death. I told him that wasn't true. He did some blood work, looking for scleroderma , even though I hadn't had any skin thickening. I did have Raynaud's phenomenon and it got really severe as I lost weight. The irony here is that he had started looking for something autoimmune. It was only as I tried explaining my swallowing problems that he changed his mind and told me that what I was feeling wasn't happening. It was during that conversation in November that he told me that he would leave me under the care of the gastroenterologist I was seeing. I knew that was the end of any possible positive working relationship. I did say to him that I understood that swallowing was a complex process coordinated by nerves and muscles. I was getting angry and desperate for help but hit so many dead ends.]

My GP looked a bit puzzled as I tried to explain the hospitalization to him. I think there is a negative reflection on GPs when their patients go through ER to get help instead of through them but he had done nothing for me. He hadn’t received the discharge summary from the hospital yet. At this point I needed to be very careful because I might still be dependent on the medical system if I failed to gain weight. I was 55.3 kg or almost 122 lbs, up from 109 lbs at my hospital admission. I booked a follow-up appointment for a week later.

Later that week, on January 15, I moved my bowels completely on my own for the first time since November 22. That was encouraging.

I also observed that I had really swollen ankles and learned that it was a side effect of gabapentin. The information on-line said to ‘talk to your doctor’ if that happens. I had received no information about gabapentin while at the hospital.

Over that week, I re-engaged with all of my supports – acupuncture, psychologist, visceral manipulation, chiropractic, naturopath. I had lost my ability to feel hunger or satiation. And I started recording things again in my daytimer. So what if it was ‘disease-focused’ — I was determined to find out what was wrong with me as I was getting no help from the medical system. It made me wonder how many other people were out there suffering because of questionable diagnostics.