A Day in the City

About a year or so ago, I signed up for a medical research program. They were looking for people with a diagnosis of Sjogren's Syndrome. It's always been a questionable diagnosis with me. I never quite fit the criteria entirely. But, since I was seeing the Oral Medicine Clinic doctor at the time for my severe oral lichen planus, she suggested to the researchers that I participate in their study. So I signed up.

The first visit back then involved a lengthy process of a couple hours evaluation, eyes, mouth, rheumatological. Some of the eye tests were similar to what we would experience at any ophthalmologists office.  The idea is that if one has Sjogren's, then dry eye condition is part of it. I have dry eye symptoms which have been treated with Restasis and over the counter moisture drops. It's not very effective if you ask me.

The mouth is examined because the salivary glands do not produce enough saliva and therefore, a person with Sjogren's has a dry mouth problem. I had had some of that but never considered it to be serious, as I have a friend who has dry mouth Sjogren's so bad that she constantly has to sip water even to talk.

A Rheumatologist determines the patient's arthritis involvement. I don't know much about this part... I mean... exactly what they look for. I don't really care. I just deal with it as best I can when I can, and when I can't I rest, take care of myself and try to alleviate pain, so I can be walking again.

So, all that kind of testing was done in 2009, and I was asked to come back now for a follow up. I was told last time that I was a "borderline" Sjogren's apparently fitting into a lot of the criteria, but not in the high numbers of how they grade those symptoms etc. But, it was enough to continue to qualify me for the study, and my doctor got a letter from them notifying the doctor of my Sjogren's diagnosis.

When I originally went for that appointment I drove up to San Francisco (90 Miles) myself, alone. This appointment I arranged to have Xavier pick me up and take me to his house in SF to spend the night and then in the morning drive me over to the hospital/clinic.

I didn't sleep well at his place. I never do. Just picture a teenage boy's bedroom and expand it to be the way the whole house is. He lets me sleep on his bed, which is some kind of futon thingy. The mattress part is tolerable, but the frame beneath it can definitely be felt through the mattress. I almost wish the futon was on the floor. But, beggers cant be choosers, and I do my best to be comfortable. I do sleep, but not well.

I awoke feeling awful. I couldn't even think to drink a cuppa tea when X offered it to me, let alone water. My tummy wouldn't have been able to handle it. I always know when I am unwell as my cheeks get red, and that is what they were. Usually when I'm like that I just stay home and rest.

The eye appointment was overwhelming. I recently had eye problems and was in the emergency room on Easter with an enlarged pupil. So, there were eye exams (by a very caring doctor) at that time, then a few days later. And now I was facing eye exams again. I just get very irritated with things being poked into my eyes. So, here I was having to be examined by the real eye doc, and then the student eye doc. Both were very nice men, and I'm sure well qualified to examine me. They were knowledgeable and communicative, answering all my questions and discussing my eye issues at length

They incidentally discovered something unexpected. I have a new diagnosis. It is called Superior Limbic Keratoconjunctivitis.

Oh great, I have another diagnosis to add to the list!

I was grateful, however, that they were able to give me the name of an Ophthalmologist in Santa Cruz who specialize in cornea conditions. So, i won't need to drive up to SF for treatment all the time. Gas was $4.51 the other day.


The mouth exam was disappointing when I learned that my oral lichen planus is not doing as well as I thought. It is quite inflamed and my mouth is not happy. I also have a pocket of  infection around my furthest back tooth caused by the lichen planus. The scar tissue has grown up to the edge of the tooth and the gum has disappeared. I cannot clean with a tooth brush. It just wont fit back there, so I have to use a q tip to clean out the gunk and pus. It is an ongoing problem.

A biopsy was done on my lower inside lip. By this time I had been there for 6 hours. By the time Xavier came to pick me up, I was shaky and exhausted. It had taken so long that he was worried about getting me home and getting back to SF for an appointment he had in the evening. I knew there was no way. So I called Katsumi and asked if he would take me home the rest of the way, if X could get me to his place. He agreed