Thursday

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.

Friday

Friends, Great to Have Them

Had agreed to go to Costco with my new friend, M A. She is a retired nun and teacher, among other things. She had a stroke last year so she tires out easily. That makes us compatible shopping partners.

(Picture is M A on the left and Helen on the right. Helen was once a nun, too. Now she facilitates our senior book reading group )

It wasn't too long we were in Costco when I began to run out of energy. I find that happens more when I have pain. I didn't have much pain before we started, but just walking any distance brings it on. Things have gotten so much worse this last year or so!

I don't have a membership with Costco. It would really save money. I was so happy with what I found.

On the way home we saw a yard sale and stopped. The woman had an Osterizer, which I had been looking for. I'd like to get a juicer some day too. But, for right now, I can make smoothies in this one. I got it for $8.

We were only gone four hours, but I was exhausted when we got back. So I went to bed for a while .

Then I remembered the neighbor across the street, Her name is Liz. I don't go by that name anymore, so it's perfect. She is 80 years old and had her hip replaced in January. She danced Ballet Folklorico up until then. Very ambitious and active woman.

I had promised Liz to go walking with her yesterday, but was too exhausted from having my osteoporosis IV injection then, so I didn't go.

Since I had my second wind, I just had to keep my promise today. It was cold out . I asked Liz to turn around and go back when I began to feel more pain and loss of energy. She went back home with me, then went off on her own to finish her lengthy walk. Then, I absolutely had to lay down and have been resting for hours. Wish I had her health and energy. Plus, her positive attitude. The picture below is Liz. I took it last year right after she came back from a performance.

Wednesday

Presentation

I'm taking a creative writing class at Cabrillo College in Aptos. I always get a bit nervous the night before because I've waited til the last minute to print out my paper to share in class. Now, the printer is NOT cooperating!

Plus, today was the day I was supposed to do a presentation on an autobiography written by whomever I wanted. I spent a lot of time in the beginning of the semester checking on different authors and doing quick reads of which ever of their books I could find. Read a few good ones, but nothing I wanted to present.

Then I remembered Janet Frame from New Zealand! I had seen a movie of her life on PBS a few years back and then again on Netflix. Always thought to read her books, but never got around to it, so now was the time to read her autobiography.

(Note: I had to use my wheeled walker in order to get from my car to the classroom. I carry a backpack now instead of a purse since I have notebooks and school things to carry about. Plus I had to take my laptop (17 inch) too, as I couldn't get the presentation printed.

These are my notes and part of presentation. I did several readings from throughout her book, and one of her novels.

What does it take to be a good writer?
A shy withdrawn personality with awkward social skills??
Being called loony, Insane? Having a diagnosis of the madness called  Schizophrenia?

That's what Janet Frame thought for several decades of her life. It's too bad she was misdiagnosed. Well, except for the shy personality, lacking confidence. She really had this eccentric personality accentuating her life. It made it difficult for her as well as others.

She led a life of material poverty juxtaposed to literary wealth. Her only toy as a child was a tin can tied to a string which she dragged around behind her. Yet, it seems, the best toy, the best gift she got from her childhood was a fascination with words so strong that she collected them throughout her life, the way others collect figurines or miniature cars. She was also fortunate to have a mother well versed in poetry, literature, and music that she was continually spouting it to her children along with their milk.

Janet wrote of her earliest collected words:

"I remember learning to spell and use these words: decide, destination, and observation, all of which worked closely with adventure. I was enthralled by their meaning and by the fact that all three seemed to be part of the construction of every story --- everyone was deciding, having a destination, observing in order to decide and define the destination and know how to deal with the adventures along the way. Partly as a result of the constant comng and going of our relatives and of our own shifting from place to place, I had an exaggerated sense of movement and change, and when I found I could use this necessary movement to create or notice advantures I was overjoyed."

I once caught the tail end of a PBS program called "An Angel at my Table".  I was so fascinated, I kept wishing I had seen the beginning and one day learned it was being aired again. Needless to say, I made sure I watched it. I was fascinated. Was the story exaggerated? How could someone live such an impoverished and tragic life and make a success of it? It was amazing to me that Janet Frame could become a famous author with her history of instability. Had New Zealanders been so starved for something to read that they gave her every possible award for her works that she qualified for? But, they were not hoodwinked after all. The year before she died, in 2003, she had been nominated for the Nobel prize for literature. That's sufficient evidence she was a talented writer. It's probably a good thing she didn't win, as she might have been burdened by the two million dollar award as she led an incredibly simple life eschewing grandeur. She seemed incredulous that her work was so popular. She died the following year at the age of eighty.

One problem we all seem to have is that a movie never really captures a book we have enjoyed. I'm glad I never read her biography first. Otherwise, I would not have bothered to watch the movie. As it was, the movie is what encouraged me to seek out Janet's autobiography. I chose it based upon my deep interest in her life as portrayed in the movie, and sadly trudged my way reading through it in order to finish it in time. It is not a fast read!

Her life story had originally been published in three volumes. (To The Is-land, An Angel at My Table, and The Envoy from Mirror City) But, I went for the copy that included them all. It was 435 pages!

I was so disappointed I almost decided I would not present it in class. I had already read a couple other biographies in the beginning of the semester I could use one of them instead. However, I felt compelled to present her story. However, I continued to read as I had put so much investment into this project.

I was hungry to absorb the fascinating details of her life as presented in the film. I wanted to learn more about the intriguing tidbits I found in researching what critics wrote about her and sought diligently for them in her autobiography. But, the details were lost to me as her life story was boringly written as dry facts interrupting the flow of the treasures I was looking for. At least that was the way I experienced it trudging through page after tedious page of redundancy, poor editing, and punctuation. Or I should say confusing lack thereof. Her run-on sentences dragged me through paragraph after paragraph.

You might say, then, why did I bother to continue reading, if it was so bad?

Wanting so much to complete my own life story, I was searching for this mysterious power she had to write poetry and fiction and her own autobiography, that won her so much acclaim. Someone had found her writing more than acceptable, not only in New Zealand, but in other parts of the world, too. What more was there than the intriging vignettes of her life I had seen in the movie? What made this woman tick? And what can I learn from her to improve my own writing.


Janet had the misfortune to have a head full of striking frizzy red hair that would not be tamed throughout her life. This, and and her lack of social skills made it difficult for her to feel likeable. She craved approval so much that she kept quiet, smiled and did anything asked of her. As an adult, she made herself so unobtrusive when living in the homes of others that she would go hide in a room away from the kitchen to eat her meals so as not to disturb anyone. She also preferred to not be around others as much as possible.

Yet, in the 1930's based upon her depression and a suicide attempt with aspirin she was sent to a mental hospital (the Loony Bin) for a "few days of rest" and subsequently diagnosed with Schizophrenia when she revealed her lifetime of imaginitative creativity. Her desire to be a poet and writer, sealed this definition and she was essentially kept prisoner for years. It is amazing to me that even after recieivng many brutal treatments of electric shock therapy she still functioned well enough to produce a novel and have it published. The day before she was scheduled for a lobotomy, her psychiatrist was suddenly convinced she was sane enough to be released based upon her publisher's acceptance and approval.


The film director, Jane Campion, who produced the movie, "Angel at My Table" was enthralled with Janet Frames novels from the age of fourteen. She said:
"Frame achieved that supremely difficult task of finding a voice so natural it feels almost as if it were not written. Her autobiography does so much more than clarify her personal history of misdiagnosis - it tells us about her whole life, which was unexpectedly enchanted, but certainly tragic. Apart from the years she spent in and out of mental hospitals, two of her sisters died by drowning in unrelated incidents. I learned about the life-saving role writer Frank Sargeson played in offering her a place to live and teaching her how to survive as a writer. A later delight in the third volume was her love affairs, one on the island of Ibiza and another with a Spanish man who wore two-toned shoes. Her ability to write about her pain and humiliation as calmly and even-handedly as her successes disarmed me. I got to know her in intimate detail and loved her tenderly.''

Jane met her once for a short period of time before making her film. And many years later she visited her odd eccentric home.

 " ...she took me through the house and showed me how she worked. Each room and even parts of rooms were dedicated to a different book in progress. Here and there she had hung curtains to divide up the rooms like they do in hospital wards to give the patients privacy. On the desk where she had last been working was a pair of earmuffs.

"I can't bear any sound," she explained... "

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From the film:

Sunday

Bonsai Sunday

We attended this and won 4 bonsai trees!


Watsonville Bonsai Club holds exhibit

The Watsonville Bonsai Club will hold its 38th annual Bonsai Exhibition 10 a.m. to 4:30 p.m. Sunday at the Watsonville Buddhist Temple.

Among the 50 bonsai trees to be exhibited will be two California trees more than 400 years old. There also will be a bonsai demonstration by Katsumi Kinoshita at 1:30 p.m. The event is free.

The Watsonville Buddhist Temple is at 423 Bridge St., Watsonville. Call 724-9283.

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Katsumi Kinoshita on left, is Bonsai Master. My Katsumi holding one of our Bonsai plants.



Not the maple bonsai we won, but similar.