I last posted from Zion Park. SO much has happened since then. The highlight is that 2010 Road Trip continues. We are currently passing through the Finger Lake District of NY State, on our way BACK to Boston.
My left eye continues to be a problem. I saw Colby, my eye surgeon in Boston on our first day there (Aug 17). I expected this to be a routine check up a year after my corneal/cataract surgery. My eye was quite red and it hurt more than usual. I attributed this to seasonal allergies since my right eye was also red. Colby turned a bit ashen while looking at my left eye and told me that the cornea was in danger. Once again my body was trying to reject the corneal transplant. Recall that it took weeks for my eye to normalize after last year’s surgery. She told me to come back in a week and to stop wearing my scelerial lens in the left eye so that I could put predisone drops in that eye every hour. I did.
On Aug 20th I saw the opthalmologist who fits the lenses. The rejection was smaller than the surgeon had found (the pred seemed to be doing its magic), but not wearing the lens had caused a “defect” in that eye (from dryness). The treatment was to add an antibiotic oitment twice a day to increase moisture. On Aug 24 Colby found the defect was even bigger though the rejection seemed under control. My new insstructions were to put preservative free pred drops into the lens and to refresh that at least twice a day.
She said (with some reluctance) that we could go to Chicago, but only if we came back to Boston to see her on Sept 7 and only if I promised to see a corneal specialist at Un of Ill/Chicago if I got any pain or the eye worsened in any way. We were delighted to get any kind of permission to travel. We had wonderful adventures with friends on our way to Chicago to see Daniel's Mom, his sister & her family.
By Wed (Sept 1), my eye was much redder and also painful. I saw Dr. Joel Sugar, a corneal specialist at UnIll/Chicago who turned out to be the husband of a very good friend of my sister-in-law, Beverly. I'm sure that all Sugar's patients get the same great care he gave me, but Daniel and I were happy to meet with a new doctor who was also "family." The experiences with Sugar led me to ponder our various relationships with doctors. I am more and more convinced that feeling some special relationship with a doctor is important. I envy people who have had the same doctor for years.
Sugar was alarmed with the condition of my eye. We considered alternatives, including two that we’ve used before with some success: stiching it shut and putting a placenta membrane over it. After considering these for a while, he suggested a third option, one we havn’t done before: “serum tears.” They took blood from me and made a serum by taking out the red blood cells and plasma. I am using this instead of store-bought tears along with the pred and the antibiotic. When I saw Sugar on Thursday am, the vision in the eye had improved somewhat, but the defect had grown. He suggested that we go back to Boston for my appt on Sept 7 and continue to do the serum tear treatment until then.
The most alarming observation he made was that I have very little feeling on the surface of either eye. This is alarming because I expect that if my eye “gets bad.” I will feel it. He checked my eye pressure without the ususal numbing drops, something that would have been far too painful in the past.
The vision in my left eye is quite bad today; it feels like I have ointment in the eye. I used a lot of oitment last night, but it’s always gone by morning. I don’t know what to think of what is going on. I’m stressed about it. When I’m stressed I start making sounds when I breath out. These sounds drive Daniel nuts. And I’m not even aware that I’m making them. I get even more stressed when Daniel complains. He gets more stressed at my reactions to his complaints. Stress upon stress.
We have been working on our book intensively... well, as intensively as one can do while traveling and visiting. Daniel and I are talking about a chapter where we discuss a domain of patient competence that I would call something like “staying (getting?) comfortable” and he would call something like “managing stress.” I’ve been reflecting on the stress both of us feel concerning my eye and its future (I don’t want to lose that eye ball.) It IS stress or perhaps more accurately anxiety; comfort is not the issue for me right now even though the eye is uncomfortable. I’ve been comparing what we are going through now with times when I was “really sick” -- times I was in the hospital and just generally miserable, sometimes in pain, but not always.
I realized, from all this pondering of our experiences, why I am focused on comfort while Daniel is focused on stress. As the caregiver, he has experienced stress. As the (very sick) patient, I was not feeling stress like he was. I was just uncomfortable. At those times a soft pillow and a gentle voice were of paramount importance to me; nothing but my comfort mattered much to me. Now that I’m not “really sick” soft pillows are nice, but I don’t need them. I’m stressed.
Daniel quotes a classic definition of stress: the experience that your survival depends on your doing something you cannot do. When I was sick, he was limited in what he could do. With my eye pain, I cannot do more than I’m doing, or at least I believe that to be the case. Certainly he cannot do more than he is doing about my eye. We are stressed. When I was “really sick,” my survival was not an issue. I wasn’t going to survive. I accepted that. I was living in the moment. And the moments called for comfort. It was a living for the now, not the future and, at least as I experienced it, it was stress-free. Now, I’m worried about the future of my eye ball, Daniel is worried about all kinds of things this situation might mean about my health. Ouch.
Stay tuned for more eye adventures.
My summary of our summer: We had a wonderful time. We calculate we’ve driven 14,000 miles from the mileage we remember from check-ups and oil changes. We have seen friends and family and had joy, joy being with them. I went for a 4 mile “wheelchair walk" in Zion National Park. All three Pollard kiddos were baptized at our church in Southport; we had a big family gathering at the beach, including a visit from my son Ron and his family. Pictures of the service, some photo taking in a near-by park, and BBQ at our house are on Facebook. PUBLIC LINK TO THAT ALBUM AT http://www.facebook.com/album.php?aid=265084&id=603328501&l=e461017d84.
We are enjoying the cooler weather Sept beings to N.E. Daniel is on the deck without a shirt enjoying the beautiful sunny day. We are sad to see the summer go even as we look forward to our fall adventures. More soon.
Bonnie for BanD
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