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

Looooonnngggg Note

I had written a long post about my trip to San Francisco and what I experienced at the Sjogren's Study appointment. Blogger crashed apparently and I lost the posting. Finally Blogger is back up online, so I am reiterating:

X came down from SF, picked me up, and drove me to his house to stay overnight on Tuesday.

On the way up, we discussed Jay's suicide and the oddity that Jay had given Xavier's phone number on his suicide note for the police to contact. It's odd because it's been six years since he had moved to New Mexico and they had little contact in that time. I know the two of them were close before this as they had been room mates for years. I think Jay knew his father wouldn't be the one to contact even though he had put his number on the note, too. When Xavier asked the police why they were calling him they said they had left a message for Jay's father and he never called them back.

Nice guy!

I slept okay at X's house, but my body was miserable upon awakening. Couldn't eat. felt nauseous. X dropped me off for my appt. I took my stroller sit-down walker so I would have an easy go of it.

Examination of mouth first, which included spitting into a container for five minutes. I have more saliva than a friend I know who has to carry water around with her all the time to sip in order to talk. But, I am aware that if I talk for any length of time, my mouth goes dry and sometimes makes me cough unless I can close mouth and try to get some moisture. Still, in five minutes I was able to produce what i would consider a sufficient amount of saliva. It will be analyzed, certain criteria will be looked for, and the dna will be tested. I wont know the results until they send me a letter.

Then visit to Opthalmologists. Since it is a teaching hospital I was given two eye exams. Nice Docs, but I was tense. I don't like those lights pressing into my eyes. Since I don't test positive for Sjogren's one of the tests they did was to stick paper in my eye lid and leave it there to see if I would produce tears. People who have dry eye will not produce much in the way of tears. I produced some tears. But, it still brings me into the Sjogren's spectrum of dryness. It was also discovered I have Superior Limbic Keratoconjunctivitis. Ugh! Something else to deal with. Surgery was suggest. Well, at least on the eye, it will be sort of a peeling off a layer from what I understand.

After that, I was given a coupon to go have lunch in the hospital cafeteria. They had a very large selection of any kind of food one could want. But the prices were higher than the five dollars I was allotted. So, I got a juice and a scone. I wasn't very hungry anyways. Too stressed to enjoy a meal. At this point I was aware of what I call the shaky syndrome. Inside my body feels shaky, even though there is no outward sign of it. This is not part of my seizure disorder.

Walking with the walker stabilizes me and keeps me from being tired out. But, I had a long way to go since handicap access was far. As usual, I dragged it up the steps into the building I needed to be in instead of walking the two extra blocks to get to the ramp and elevator.

Still, it was a lot of walking for me and when I got back to the clinic I felt weak and exhausted. I was glad to sit and wait a bit. I worked on my crochet blanket I am making for Mary's baby (in Buffalo, NY).

THen, the mouth doctors were back to test my saliva production in another way. Two little suction devices were attached to the inside of my cheeks high up beside my upper back teeth. I say there while we waited for saliva to travel down two tubes into a container held by my chin. Occasionally some lemon juice was painted on my tongue in order to stimulate production.

We discussed how I like to put lemon in my tea and squeeze it on my food. Apparently I instinctively was self treating to get my mouth to be less dry.

Then there was an examination by a Rheumatologist.

Then, a visit from my Oral Lichen Planus doctor. She was not at all pleased with how my mouth looks. It was so well cleared up and healthy looking at our last visit. But now it looks "angry". I really didn't think it was too bad as it has not been hurting very much lately or burning and at least I don't see the raw ulcers that I used to have

The one thing that has bothered me is the lower back tooth where there is a permanent "pocket" where food gathers and I cant get a toothbrush in there. It gets filled with pus sometimes. I have to clean the area with a Q tip. One day recently, it was really bad and I dug at it until all the pus was gone and it was bleeding. I was able to get my regular doctor to order antibiotics that time.

We discussed that issue at length. I have to return in two weeks. I was surprised she considered it that serious. But, after all these years of seeing her, I will be there for my appointment.

One of the research doctors came back in with her camera and a student to teach, and she took pictures of my tongue because "the scar formation is so interesting". I just had to laugh!

Then it was time to do the biopsy. I've had one in the tongue before. It's no picnic. So this one on the back of my lip down by the bottom of my teeth was a piece of cake comparatively. That area was numbed with Novocaine before pieces of salivary glands were removed for study.

I called X to come and get me and he drove me as far as Sunnyvale (sort of near San Jose) and dropped me off at the Starbucks where I met Katsumi to take me the rest of the way home.

I was totally exhausted, and continue to feel the effects.