You wake up, you're older, your plans just got smaller….

Well, it’s been two weeks. I think I am ready to talk about the rest of the story. Since this is our personal record of this adventure as well a travelogue, Rae and I agreed we should include this. It won’t have much to do with India per se.

As I mentioned in the end of my last blog, on the last day of my hospital stay I met with a Rheumatologist, Dr. PD Rath. He, I think, was the best doctor with whom I interacted while in the hospital. He, first told me he was sure the immediate problem was not that the cyst was so big that it had blocked the leg. Rather he was sure it had ruptured and the fluid from the cyst had infiltrated the tissues of my leg. I quick ultrasound confirmed this diagnosis. This changed the direction of treatment and within a week the swelling was markedly reduced and progress on that front seemed to be going well. I was still taking pain killer every six hours or so but, as noted, the swelling was going down and it was getting easier to hobble around.

Then the other shoe, so to speak, dropped. In my last blontry, I admitted to not properly foreshadowing. Well, I foreshadowed the heck out of this one. Dr. Rath, actually told me blood tests revealed I had an auto immune disease. His analysis of my symptoms, and the MRIs of my back and leg and convinced him that I had spondyloarthropathy. As you know, auto immune are those in which the body’s natural defences against disease get misdirected and attack the body itself. My particular flavour attacks the spine (particular lower spine) and potentially all of the connective tissues in all of the joints, plus eyes and digestive track.

He said there was not currently a cure, but there were medications that can help with the symptoms. The problem is these drugs are hard on the liver and kidney. Unfortunately all of the medicine I had been on had been hard on my liver and kidneys, and he wanted me to be off all medications for a week before I started the new course of treatment.

OK, I thought, how hard can it be? By now I was feeling quite good: swelling was almost gone; mobility was quite good. It was frustrating to always (about 22 hours a day) have my right leg propped up at a 30-45% angle, but I couldn’t see that it would be too much of a trial. On the following Friday I would be on my new medications and on to full productivity.

Well, Tex, I sure missed on that estimate. I WAY (like completely) underestimated how much relief I was getting from the pain killers. Saturday was fine. In fact, it was the best day I had had in weeks. “Yeah baby! Just like I thought this is going to be a piece of cake.” Saturday night was bad and by Sunday, I felt like my body was under full attack. I was running a low grade fever that seemed to spike occasionally, every joint in my body (not really much of an exaggeration) hurt. My neck was so stiff and painful I couldn’t turn my head. My shoulders, particularly the surgically repaired one hurt and would experience shooting pain with use. My lower back, hips, knees, ankles, and feet all hurt. I could not roll over in bed. Getting in any given position was hard and painful; once in place moving only happened with great pain and effort. I could only stand with great difficulty and intense pain. Walking was an impossibility without a cane and even then I shuffled like a 90 year old man.

Sunday, Monday, Tuesday. Each day got worse and my physical world shrunk to essentially my bed and the bathroom, and then to just the bed and a pot. I was beginning to wonder how I would ever get back home. I might have to die, be cremated, and have my ashes sent home. I couldn’t imagine getting on a plane for 30 hours!

The darkest point was probably Monday night, although the seeds for improvement were already laid. A blessing Sunday gave me courage, peace, and hope. Monday afternoon I had the thought that I could have a couple of young men from the Branch stay the night and help me as needed. Monday night Siddharth one of the Priests from the ward stayed. Tuesday night Siddharth’s brother Deepak and Nitin Sony stayed. The presence of these young men helped me physically (such as helping stand) and emotionally. The anxiety of needing something and not being able to do or get it was removed. Still the pain was unceasing with only muscle rub to provide any release.

On Tuesday there was a real breakthrough. A friend called the doctor on my behalf and explained how bad the situation was. He convinced the doctor to call and talk with me. On the basis of that conversation he started me on a three medications: two painkillers/anti-inflammatory drugs and one to protect my GI track. He also moved my appointment from Friday to Wednesday.

Robinson went and got the prescriptions filled. I took them and within 30 minutes – relief. Beautiful, blessed relief. Wednesday, he added four more meds: one more anti-inflammatory and three to protect liver, kidneys, etc. Each day since has brought improvement and a milestone: Thursday was spending the whole day up and about. No resting. I was exhausted Thursday night but the pain was under control. Friday I went into the office. That was a mixed experience. My office was fine but the chairs in the meeting room were so uncomfortable it generated waives of pain. Saturday, brought a willingness to write about the past two weeks, and today I went to Church.

So far, every day the pain becomes more controlled, my ability to get about improves. It is not that there is no pain, but it is tolerable. I would say hope for the future is back, although what that future actually holds is unknown. I have turned the future over to God. I will do what I can step by step, day by day.  Beyond that, or where that leads, I can’t control.

I am grateful to so many people who have prayed for me; who come to visit me; who have thought about and worried about me; who have made calls and acted in my behalf. We talk a lot about our Church family. Over the past few weeks I have felt in a material way assistance and concern on both sides of the veil.

 Namaste