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.

It's Laurie

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.

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... "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From the film:

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.

~~~~~~~~~~~~~~~~~~~~

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

Not the maple bonsai we won, but similar.

Pelvis Slippage

I've been sick with tummy and bowels acting up. It's 2:30 in the morning. I can't sleep because of pain and visits to the bathroom. So, I stay sitting up in bed with my laptop sorting pictures and putting them in file folders.


Biggest problem is that my pelvis on the left is slipping out of it's normal position. I can feel it like sitting on a rock. I wonder if I will walk okay tomorrow.

Enough is Enough!!!

Laurie called me last night. Her 13 year old daughter, Chloe had passed out and then went into a seizure. (She's never had one before).

Chloe is a twin to Rose. She is the one who performs, dances, sings. Quite talented, I think. Rose is the Geek Girl in the family.

Lucky that Laurie is a nurse. Her middle son, Justin lives at her house with his wife and three kids because his landlord's house got repossessed and they had to hurry and get out.

Justin is a paramedic. He took care of Chloe until the ambulance arrived. They took her to the nearest hospital. But, when they discovered her white blood count was very very high, they sent her to a bigger hospital. They did a lot of tests on her, including a spinal tap. I was pretty worried she might have Leukemia. She had no fever and it didn't appear she had any infection.

They put her in a room by herself and Laurie stayed overnight with her. The next day (today), she had scans and EKG and EEG. The doctor never came in until this evening to tell the results.

Chloe has an infection in her sinuses and she now is taking antibiotics.

I find it interesting to realize that one can be that sick and not run a temperature beyond 99 degrees.

I didn't feel well myself and probably a good thing otherwise I would have gotten stressed out. Being sick and lowly has it's advantages, I suppose. I had all I could do just to take care of myself. I think it is left over feeling druggy from the Abilify. Though, I did not take any today. I think I will wait til Monday and give a call to the doctor and ask if I can take it at bedtime instead of morning.

Abilify Effect

So, I took the Abilify about noon with my toast and tea. I'd been informed to take it with breakfast. I wake up late, and that's my breakfast. I was puttering around the house on low energy when I realized it was past time to go to crochet class over at the local hospital and meet with the only flesh and blood friends I have in this area. Late, or not, I decided to go.

It didn't take long for me to realize it was a mistake as I was feeling quite druggy. I drove home very carefully and went to bed.

I NEVER sleep in the day time. But, here I was snoozing along.



My daughter called me to tell me that her husband's thyroid cancer had returned.

He recently had a scan and when he called the office, the nurse said it looked like a recurrence. I had a little problem with that. I don't think, legally, a nurse or any other staff is allowed to tell you something negative like that. I believe it has to be the doctor!

Still, Scott has to wait to talk to the doctor to see what comes next. More surgery? More radiation? What?

Several hours later,that night, Laurie called me to tell me it was a false alarm!


Note: the picture is of Scott, my son in law

Day of the Shrink

Drove to Stanford today. The drive is about 60 miles over the Santa Cruz mountains on winding, curvy Highway 17. I had a hard time focusing on driving with so much on my mind. I had to keep reminding myself to stop thinking about negative things. I was running through ideas of what I would say to the doctor, and I've learned in the past to not do that. If I make a list before hand then, that works.

I was really surprised at the difference I felt about the doctor from the last time I saw her. I thought she had already made up her mind about me based upon the consult I'd had with the previous shrink from February who said it was unlikely I was a bipolar. If so, it would be a non specified type. He had also said I was "stable". I had asked to see a shrink so I could get my medication changed because I had been depressed for months. I told him I felt flat. And I wonder if he took it that I meant stable.

Anyhow, the woman doctor I saw today, I saw her a couple weeks ago and when she suggested lithium I refused, when she suggested Neurontin or Topamax I told her I couldn't take them. Neurontin makes me more crazy and Topamax dopes me up. They should have named it Dope a Max. we discussed a few other drugs but did not get anywhere and ran out of time. So I was to make an appt "at the next possible opening" which was not until May 25. And now I'm on the edge, and there's no where to go but down.

Thank heavens the ophthalmologist pulled strings to get me in to see this doctor today. My family doc is connected to Stanford even though the clinic I go to is near home. The Ophthalmologist is also connected to the same clinic. They can all look at a computer and read each other's notes. So, not only did the Ophthalmologist get in touch with the Shrink, but so did my family doctor.

Seeing Doctor Sommer today was very successful. She ordered Abilify for me through the computer and the prescription was faxed directly to my pharmacist. I just love my pharmacist! She works in the Watsonville hospital outpatient pharmacy. Since it's a small hospital there's not a lot of competition for getting RX's filled. Mostly it's nursing staff who get their prescriptions filled there. So, Angela, the pharmacist, and I know each other well. She has been through years of my medical changes. In fact, at one time, I think the business made a lot of money from me. Thank heavens insurance pays for it all!

Before going home  I went over to Stanford Shopping Center. I love going to two stores there. One is Andronico's, a very high-end grocery store, where the wealthy shop. I get some small bakery item each time. Scones and coffee to have on the way home. Don't usually drink coffee, but need the caffeine to get me home.

The other place I like to go is Crate and Barrel. Today I got new 10 oz. glasses. Kats called me just before I left the parking lot to go home. I told him C and B had the mixing bowls we had been looking for. In fact a whole set of them starting from a very small 3 tablespoon size right up to a large salad bowl size. Amazing, for only $30.00 Kats told me to go back in and buy it, put it on my credit card and he would pay.

I went home a happy girl and hopeful the medicine will help me.

The picture was taken from inside the mall, looking out across the garden and one of the fountains.

No School Today

I think everything has caught up with me.
I was just too tired to go to school today.
So, I stayed home.

Mydriasis

Awoke this morning with one pupil blown up fully open and vision quite hampered. Very disconcerting.

Emergency room visit.

Sent home without a diagnosis or treatment. No MRI since there were no MRI techs working on Easter. Told to visit first thing tomorrow morning with the ophthalmologist that was consulted on the phone by the ER doc.

After I got home, imagine my surprise when the ophthalmologist called me at home and asked that I come to her office right away.

We arrived (Kats drove me) and she gave me a full exam which revealed that none of the usual serious or obvious causes were apparent. No aneurysm or stroke for example. Thank heavens.

She put some "green drops" in my eye which eventually made the pupil shrink down to normal size and my vision is almost back to normal.

Got to try to get to bed early so I can wake up early and drive to my appointment. Hopefully the MRI will either show nothing at all, or show something that can be easily fixed.

Hopefully, I will then be able to get to class on time. I would rather not go at all, but even the doctor told me I should attend. Doctor's orders? Ha! We will see.

There is something sobering about suddenly losing your vision. I don't know that I would have been so calm without Kats being with me.

Sure did take my mind off the misery and despondency I had been feeling about Jay's suicide.

Suicide

On Wednesday Jay jumped off the Rio Grande Gorge Bridge near Taos, New Mexico. My son called me yesterday. I thought he was calling about my not showing up at his house after the fire. I couldn't remember if I had texted him that I was not coming. After a moment of chit-chat about the fire, I could tell by his voice that something was wrong. When I asked him, he told me he got a call from the sheriff in NM telling him that Jay was dead. It did not register in my mind at first. He repeated. I was surprised by my response. No, no, no, no, no! I felt ashamed that my response was not for comforting my son. I wondered if it had been his friend and not a cousin if I would have reacted differently

Jay was an untreated bipolar. I recall discussing the subject with him some years ago. He had no use for psychiatrists. He was once my son's room mate. He admired his brilliant mind and had great conversations with him on philosophy and other things way beyond me. One time while we stayed up half the night talking while the household slept. I was fascinated by the discussion. I cannot even say right now, what all we talked about. I remember a few things: His brother's death in the 1989 Loma Prieta earthquake. He had been buried in the debris of the apartment building in San Francisco that had collapsed. Robert Anton Wilson. Psychic phenomena. Reincarnation. Death. Depression. Insanity. God and the impossibility of it's existence, or maybe the possibility. Certainly that no one could know from reading any kind of sacred text making descriptions as though there was only one way to make a definition or description of appearance.

We talked other times, too. He was well versed in Discordianism. His explanations of it baffled me. Among our discussions, we learned we had the same ancestors and figured out that our closest great grandparents were about four or five generations back. Surprise! We were cousins!

Jay had the soul of an ethereal. You knew it being in his presence. I can't explain this. It is the way I experienced him. I knew he had a great sadness beneath that tarnished and shining exterior. He understood my own history of turmoil. We had suicide in common. He probably knew more about my son than I do. His eyes were beautiful. In my memory, an incredible blue. But, looking at pictures of him now, they don't appear that way.

After getting off the phone with my son, I looked for Jay's name on google and got frustrated. I thought perhaps there would be an obituary. I found none. Then I googled Taos +Bridge +Suicide and learned a few details that had been published in the news. I went to bed feeling sad. I woke up feeling sad. The sadness permeated my dreams and my day. I googled again and again, thinking there might be news updates. But, nothing was changed. Had there been no further investigations? Had his parents enough clout to prevent anything further being written about him. His name had not been mentioned at all. Perhaps in a few days, there will be an obituary.

I can't stop thinking about him. I looked at pictures of Rio Grande Gorge Bridge. It's beautiful country, raw and wild. I had once said that when it's time for me to die, I will go to the Grand Canyon as a tourist and "accidentally" fall in. I felt it was a romantic idea. What a way to go! A most beautiful setting... the Grand Canyon. Not dying in my sleep after a miserable illness or whatever. I thought the headlines would stop people in their tracks. I would have an impact on them. They would pray for me. And here we are today with Jay having done something similar. 


I can see him in my mind's eye. I can feel his despondency and determination to climb over the railing. I believe there was anticipation and some sense of freedom and joy. Exhilaration at letting go. And then that deep crying out filled with the broken soul in great overwhelming grief as he fell some 650 feet. 

Did he turn his back on the gorge and fall backwards with his eyes closed waiting to hit bottom? If he did, I hope the angels rushed up beneath him and held them in their embrace letting his body fall while his spirit raised up with them.  

Did he dive? Did he look at the sky first, then down to the earth? Was his last sight of the gorge? The rocks, the river? I want to think the sight of those things might have given him some sense of infinite love.


I can't stop thinking about him. I can't sob or moan or cry. It's all locked up inside. Only sadness lays heavy on me. A part of me wishing I could do the same. A part of me wishing I could have known, could have contacted him, could have helped in some way to prevent him. But, who am I to decide that his life on earth was worth preventing his suicide. If he suffered so greatly that his only way out of the suffering was death, perhaps that was more meaningful to him that continuing to be in that perpetual misery.


I haven't seen you in a long time, Jay. I felt sad for you that you moved away to New Mexico. It seemed like such an incongruous place for you to be. It seemed San Francisco was your home. Is that why you came back last week to visit? Did you come back to the bay area to say goodbye? I hope you left a long letter somewhere that will surface. Some words of wisdom, perhaps. Something to give understanding of your pain. Something to show that your last act was your most meaningful, if that is what you meant it to be.

Feeling Down

I've been sinking down the last couple months. Seeing my counselor is not enough and I told her I needed a psych consult to see if there is some med change that needs to occur. I've been stable on Lamictal a long time, but this depression has been unrelenting. I finally got to see a shrink in Feb. After an hour appt. he said he would do nothing as he didn't think I was a bi polar, and I should go see the geriatric psychiatrist. I only got to see her today. I pointed out that I don't think the last doctor could make a fair assessment of my diagnosis after one hour, when my previous one saw me for fifteen years. And I need help Now! However after a lengthy interview, I was put off again. I am so down about this, I called the local helpline. I never do that. Never. After being punted from one person to another I finally learned I had called the wrong county. So that ends that. I'm not at the end of the rope right now, like I felt when I called. I've got to sleep on this. Tomorrow, I've got to do something about this. I can't keep driving a hundred miles to not get the care I need.

There's more details I've left out, but just too tired.

Neighbor Dog Troubles

I find it necessary to record occurrences here of the neighbor's dogs being let loose.

From within their house or in their fenced yard these dogs bark at anyone that passes within four houses away. It is understandable. They are dogs. That is what dogs do.

But, their owner Terry Godwin, let's them out when she leaves the house for small errands, such as getting something from her car or greeting visitors to her house or walking over to a neighbors. She leaves the door open so the dogs bolt.

This happens frequently, several times a week. I hadn't bothered to keep track until today. There is a lady who walks her two dogs on leashes daily. Today, Terry's dogs charged out the door and went after them. It is not the first time this has happened.

What made today different was that the lady with the leashed dogs was all the way up to the corner of the street when Terry's dogs went charging after the lady and her dogs. Of course she could not run away, while Terry's dogs attacked.

I should mention that the lady's dogs do no barking or growling at Terry's dogs.

While Terry's dogs are running out the door and past her and up the street where the lady with the leashed dogs was located, she says,

"Come back here. Come back here... I don't know how they got out."

Mind you, she says the very same thing every time her dogs go out the open door. She makes no effort to prevent their escape in the first place. She simply walks after them shouting "Come back here." Sometimes they go back. Sometimes they don't. When they don't go back other people in the neighborhood, or people who have come to visit will help to chase them down.

Today, I feared not only for the well being of all four dogs involved, but also for the lady who walks her dogs on leashes.

By the time Terry's dogs got to the lady with the leashed dogs I couldn't just stand by and do nothing. By the time I got to the corner, Terry encouraged her dogs to go home and was walking with them. I saw the lady with the leashed dogs hiding behind a truck parked in the driveway two houses from the corner.

I asked the lady if she was alright, if her dogs were alright. She repeatedly said, "Everything's alright." So, I turned and started on my way back home.

It was then that I saw Terry pick up her bigger dog, Baby, I think the name is, and carry her over to where the lady with the leashed dogs was. I couldn't see what happened as they were behind the truck(s), but I could hear the dogs barking and screeching.

I started back over there, when Terry came back with her dog and told me to mind my own business.

I feel this is my business. I don't want to have to witness this anymore. It has happened similarly before where Terry has had to get her loose dogs away from someones leashed dogs.

It is my understanding that dogs should not be running loose, even in their own neighborhood. It is my understanding that dogs should be on leashes when outside of their homes, or fenced if they are in their yards.

It is my understanding that dogs can be trained.

It is my understanding that dog owners are responsible for what their dogs do. 

What bothers me most about this is that those dogs are innocent bystanders here. They may bite someone at some time. If so, the ordinances here in Watsonville state that the dogs would be taken away and put down. If Terry would take more responsibility for her dogs, she may never have to face having her loved ones taken away from her.

Wednesday April 6, 2011

Celebrate!

Chloe Give up Dance?

With what Chloe has been through in surgery and her having to give up dance these last few months, I know it's killing her now that she has returned and she is learning she can't keep up. I'm wondering if it will be a matter of time before she will have to give it up completely. I worry so much that all the irritation her healing bones are getting that it will turn into CS.

This is an old picture of her when she was little. She is now 13 years old

Binge, Runaway Niece, Back to School

Some more thoughts on what I wrote yesterday:

I don't think Chloe's going to try out for American Idol. She already auditioned for America's Got Talent a few months back. She "nailed it" as her mom says. But, we shall see, as they are supposed to call back in April.  I just hope her disappointment over dance will be healed enough that she can truly put her energy into music.

Don't think Xavier is on Steve Job's diet. I don't think X eats fruit. I couldn't do without fruit! I did it for years and constantly ate junk food sweets and drank sodas out of desperation for what my body was missing.

My great niece, (my sister's eldest granddaughter), age 17, just "ran away" from home according to her. But, according to Jasmine, she got a lawyer and filed for independent minor status, and moved to Florida (from TX) to live with her girlfriend. She recently came out of the closet, and got rejected by her mom and my sis. I couldn't believe it. But, apparently there were more dynamics than that going on. My sis is drinking According to Jasmine, physical abuse of her mother by the boyfriend is another issue. I feel like I'm stuck in the awkward middle! Jasmine didn't un-friend me like she did her other family. I just worry that she might feel like she can "never go home". I want her to have a home here she can come home to, if necessary. And I hope she understands that.

I don't know what I'm going to do about a new doctor. I have the name of one that the ladies in my crochet group were discussing the other day. Checked her references. She got her medical degree in Mexico. Spent her residency at Mt Sinai Hospital Medical Center in Chicago, though. At the rate I'm going I need to move over to Stanford or San Francisco.

There's some logistics I need to balance in order to get to school and manage being a student in class. Getting there, for example. Do I drive myself and worry about a place to park? Or do I take the "handicap" Metro shuttle and pay six dollars round trip to have them drop me off at the disabled students department when it would take 50 cents worth of gas if I drive myself? Then wait for the student shuttle to haul me across campus? All the while never having the security that I'd be on time. (as I've experienced in the past with those two agencies). It would be stressful and I wouldn't be able to depend on my body to be healthy. What if I suddenly can't walk, or suddenly go into bad pain? I wish I could trust my body!

So, if I drive and find a decent place to park, I better be in good condition to walk to class. Should I take my rolling walker the first class just in case the class is full of students who've beaten me to it? I can't sit on the floor up against the wall the way I used to when a class is full. After the first few classes when the wimps drop out, then I wont have to worry about most of those issues.

Class will be on Monday afternoons. Usually that is my day of rest. After a weekend with Kats, I  need that time to myself before facing the rest of the week. I will have to find a way to rest in the evening, I guess.

Tuesdays the drive to Stanford for binge group and counseling. Usually a Wednesday or Friday for the trip to UCSF. Not every week but at least two or three times a month. Not to mention local doctor appointments.

This month I finally have a dental appointment at UCSF with someone who can actually do some serious work with my teeth now that my mouth is "healed" up, sort of. So it will be interesting to see how I handle that! Right now I have a long term toothache, needs a root canal, I think. I dread if it needs to be pulled, as I won't have a place to hook dentures if that's the case. I will need to put the charges on my credit card. That is a big worry for me. Really big. I can only go so long without paying utilities before they will be shut off. I'm hoping that I can pay about 500 a month based upon the amount of work that has to be done. If I don't spend any money for anything at all except bare necessity. That way it wouldn't be too bad doing without for a while.

Running the CS group, upkeeping my 3+ blogs. My cats haven't written anything for about two weeks now. I think I will have to sacrifice facebook! Yup... there goes my social life! I wish I had some of my old hypomanic energy to sustain me.

I don't worry about writing for the class. I have confidence in my writing. I can do that. It's just having the opportunity to squeeze writing into my life that stresses me. I really want to take the class so I have daily inspiration to be more serious about my writing. I'm actually working on my autobiography/memoirs to be published. I want to be around other writers.

Then the thing that stresses me out the most is leaving my 4 kits at home alone all that time I will be gone. I know they would manage, but cats who are left alone bond to each other and to hell with the person who feeds them. I want to be able to pet them, to hold them, to hear them purring in my ear. I want them to sleep with me and I want them to be happy, healthy kitties. If I was a bit more into magical thinking I would swear that little miss Buffy (da Bampire Flayer) is my sweet old Keli, reincarnated. She even has some of the same markings as Keli did, and she has a lot of the personality traits Keli had when she was little. She "talks". None of my others cats do that.

I've got to call Meals on Wheels tomorrow and get deliveries started. Since I qualify, I might as well save myself from having to buy groceries. They will send a bill at the end of the month but will accept a donation of any amount. It will be interesting to see how their diet might, or might not fit into my new "regime", what ever that might be. I had to stop in the past because the food burned my mouth sores and caused more problems with my tummy. I start the Stanford Binge group next Tuesday at 6pm finish at 8, arrive home at 10 pm. I'm gonna want to EAT when I get home. Better that I have a healthy meal in the freezer when I get there!

Binge and Fire Doctor

Chloe has gained fifteen pounds since her surgery last August. That discourages her a little bit. But what's really disappointing for her is her ankle still is not strong enough for her to attend dance classes without major suffering and swelling. She is beginning to realize that because she has the multiple bone tumors, she may never be able to perform like the other girls. It breaks my heart. I just wish she would put all her efforts into voice and instrument. She is so good at those, especially voice.

The binge eating study at Stanford accepted me as I qualify as a binge eater. (Well, Duh!). I start next Tuesday for 12 weeks. They have decided to put me in with the ones who are "emotional eaters". 

 

I told them I actually have been listing what I'm eating and lost a few pounds. But, I'm eating what I want (and gained back some). I asked them if it was against the study rules. They said no. I really feel weird about this! I had a lot of stress with Kats here last weekend. Nothing unusual, it's just normal for me when inter-relating with another person, including Monday when Xavier came to visit. 

 

Kats supports me regardless of what I eat or don't eat, and never says a word about my ordering dessert (unless he's short of cash). Xavier, on the other hand, has become a vegetarian (except fish) and lectures me about what's good to eat and what's not. Though, he doesn't condemn. I have to laugh because he believes the best source of protein is nuts and when I tell him they are high fat, he rationalizes by saying they are not "transfat". We ate two huge salads that day. I love salad (now that my mouth is healed enough to eat them) but I still want my mac and cheese and my bread, and muffins, and.... 

It's gonna be interesting to see how all this works.

I might be crazy to do this, but I registered for college, and will be taking a creative writing class this semester. My shrink heartily approves and I'm having panic attacks over it, realizing maybe I can only do so much multi-tasking. But, I really want this more than anything!

I fired my new doctor (Taylor) today. He has ordered tests every time I've seen him. He has repeatedly said he wanted me to do a cardiac stress test. I told him I cannot do the fast walking required due to my pelvis AND I told him that the last time I had the lie down kind where they inject you with a medicine, I had a horrible experience, SEVERE pain and blood pressure that shot up through the roof and I would NOT submit myself to such a test again. Horrifying! 

 

Each appointment he would suggest it again and each time I explained I was NOT going to do it. The other day I went to see him for follow up on blood tests, and he tried again. This time he said it was not the same as before, that I only needed to lie on a table and it would be like a scan, called Lexiscan. I asked what medicine is injected. He said "just an isotope". I asked what it's called. He said Lexiscan. He even took me into the room where he has his own private scanner. It looked just like a cat scanner. So, I said, okay. Scan was scheduled for Friday. 

 

Last night I looked up Lexiscan. Guess what! it is the same medicine that I had the bad reaction from. The doctor is either a liar or he is just plain stoopid! I was so angry! When I made the appointment for the scan I was given a paper and signed it saying if I had to cancel the scan I had to notify them within 48 hours otherwise I would be charged 130 dollars. So, I'm looking at the clock and calendar in the middle of the night and realizing I better get with it. I wrote a letter, posted it on the blog for evidence, copied to facebook and then put it in an envelope and drove over to his office. 

 

Oh... forgot to mention that I called his office and there is no way you can leave a message except for the doctor on call. I did leave the message saying I found out about the medicine and I was cancelling my appt and apologizing to the doctor on call for bothering him/her. However, I thought i better play it safe and I took the letter to the office, found the mail slot in the door and put it through. It caught on the leg of a chair. So, when I woke up in the morning (how in the world did I sleep?) I called the office and got one idiot after another who didn't know what I was talking about.

 

Finally... finally! I talk with the office manager who tells me she wont charge me for breaking the appointment and apologizes profusely on behalf of the doctor (sounds like she is used to this). By the time I explained how I didn't trust him, I realized I was not going back to him and told her I wanted copies of my records. 

 

"We send your records to your next doctor". Nope, I tell her, I get the records. "We have to charge you for that" Fine I tell her. I keep my own records. If you knew my history you would understand why. (BTW she's got my records right in front of her) She tries to talk me into seeing one of their other doctors, but finally says she will mail me my records. 

I'm too annoyed to write any more. I have some ice cream that deserves my full attention!

Adenosine bad for my heart

January 26, 2011
Dear Dr. Taylor,
This is to inform you that I am cancelling my appointment for Lexiscan Friday, Jan 28. I have just learned that a drug called Adenosine is used. I have previously (twice) informed you that I wont have a stress test using this drug as I have had an extreme negative reaction in the past.

I wish that someone would have disclosed to me that this drug was to be part of the test. Since I could not notify you by leaving a phone message, I 'm notifying in writing. If there is any question about this I can be reached at 786-9795

(signature)
Elizabeth Munroz

Little Miss CoCo - Dancing Girl

Very Special Friends - Chondrosarcoma

These collages are from photos I've received over the years from other people who have dealt with Chondrosarcoma, the same cartilage type of bone cancer from which I was diagnosed as a young woman. Though the survival rate for chondrosarcoma is supposed to be quite good, more people on these posters are gone than I want. Some of them are strong survivors who have amazing stories. I feel so privileged to know (or have known) these beautiful intrepid souls.

Bambi, Timmy and Ninja

Kiss Me Kitty!

Survival Happens!

This is on my key chain. My sister gave it to me quite a few years ago. She is a professional masseuse, and was working in a chiropractor's office where these plastic skeletal spine with pelvis were available for patients if they wanted them. 

The part that is painted red is the part of my pelvis that was surgically removed in 1968 due to a rare bone cancer called chondrosarcoma. I carry the key chain with me to show to new medical personnel in order to explain part of my medical history. It clarifies the extent of my internal hemipelvectomy. I keep it clipped onto my purse. Sometimes, just in the normal aspects of life, someone will notice it and comment on it. I take that as an opportunity to give a short message. I survived cancer when it was believed I would not survive. I want others to know to not give up hope. If they, or someone they love, gets a diagnosis of cancer, it doesn't mean the end of life.

My stove caught on fire and I went out and bought a new one. The landlord wanted to repair the burned one even though the firemen took it outside and wrote it up as defective. It was quite old. I just told him I was going to use my own from now on. I was afraid he would hoist another old junky one on me. He came over and took parts out of it before we junked it.

At the same time, the washer finally died and I bought one of those too. All on credit. Glad I've got the credit, but I'm one of those people who would rather not have a balance and always pay up as soon as I have money. So, this has been a challenge.

Deane Family Christmas

The two blues sisters are: on left, Elizabeth Munroz, on right Suzan Deane-Simpson. The lovely seated couple, the patriarch and matriarch, are (the original) James Deane and Genevieve Borden-Deane. The goofy guy in the front. We don't know who is he is. Never saw him before! Just kidding! That's my brother Roger M. Deane. 

Happy Christmas everyone!

Hip Injury

Been waiting for a callback from doctors office for a possible squeeze in. I injured my hip this weekend getting into Kats car. My big butt wouldn't fit behind the steering wheel so I twisted to get myself into the seat. Not a good idea. I felt it immediately and been in excruciating pain and barely walking since. Had to cancel dr appt in SF. Stayed home the last 3 days in bed taking morphine med and prednisone. Self doctoring works. Doing better, and hopefully will be able to tolerate trip to L.A. to see daughter and grandkids. Xavier and girlfriend taking me. The 6-9 hour drive  should be interesting! I'll be taking the new kitten with me on the trip.

If I just lay back when I'm hurting, I will just continue to lay back, turn into Jaba the Hutt and still have pain and suffering. I might as well have a good time while I'm at it. At least be looking at the pretty lights when they carry me away flat on my back, eh!

Dream Library

I don't know why, but this appeals to me!

Cat Dancing

When I'm an old lady, I shall dance with my cat and be happy!

Silver Rose Ring

 

gregfedhem

Thumb Up

hpydance

hg

Javelina

 

Glad to See You!

Beginning

Moving Away from Fires?

Someone has made a suggestion that I consider moving out of California. Over the years I have lived all over the country. My first husband was in the military. I am living now where I want to live.

Asthma and allergies can be where ever one lives. (Mold, Humidity, plants one is allergic to, ice cold winters)

Of course, the fires this year are really bothersome. In the early 60's, I lived in Los Angeles where the smog was really bad, similar to the air quality going on around me right now. But it was just as bad in Buffalo NY, as well as Indianapolis when I lived there.

I figure wherever any of us live, natural phenomena is going to affect us in some way or another.

Fires are a natural part of life here. It's just that this year has been way over the norm. It's been a dry drought summer. With the Summit fire, nearby, I drove up to San Francisco and stayed at my son's house, and could do it now if I feel it necessary. For part of the fires he was getting smoked out, too.

Regardless of the smoke, I'd rather stay here at home where I am most comfortable and everything I need is available. I'd rather sleep in my own bed than my son's sofa.

Presently, the largest fire is expected to be contained by the end of this month.

Too Many WildFires

Not all the fires are still burning.

So far we have had 1700 in the state since May.

I have lived here a long time and have never seen so many wildfires.

The fire closest to me right now has been burning since June 21 and has decimated 190 square miles of national forest.

The air quality is very bad, everything is smokey.

My asthma is really aggravated.

Asthma Fires

I have recently been asked for an update on the new fires in my region. A new one called the Basin Complex Fire is in the same county where I live. Though it is probably at least 30 miles away, the smoke spreads over the area. As long as I stay inside it doesn't bother my asthma much. I have a small air conditioner in the bedroom and I can hole up in there with my books, computer, and TV if necessary.

There is a bigger fire south of me about 40 miles or more. It's called the Indians Fire  It's presently at about 10,000 acres.  It's more brush and grass than the other, they say, and in a more uninhabited area.

Locally, over a thousand have been evacuated. Though it is a smaller fire than the other one, it involves Redwood trees. I am saddened that there are fires at all, but also saddened that the trees are being burned.

All in all there have been hundreds fires in California right now

more info on those fires:
http://en.wikipedia.org/wiki/Summer_2008_California_wildfires