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I haven't been able to write because I have dial up access and my phone wasn't wired properly in my new apartment. I guess I was lost in the shuffle during the SBC strike. I've been isolated for two weeks. I think some people have probably lost me.
I learned that my liver returned to normal. They haven't explained it yet. That is such a relief. The Dr. said I was taking too much Geodon and I should have an EKG. I think that maybe that's all that's wrong. Maybe after the level of the drug is reduced in my bloodstream I will be normal again. No one has explained the hunger and nightmares though. I really have to come out of denial on the nightmares. It really affects me life in a negative way because I wake up screaming. I don't want to travel like this. I don't see a Dr. until July because they accidentally cancelled an appointment that was previously scheduled for June 21st. I'll call the Dr. on Tuesday.
I was such a zombie at the advisory board meeting yesterday. They expect me to correct all this paperwork which must be perfect down to the tiniest detail. The rules to filling out the paperwork is kind of arbitrary and so it is hard to teach the aides how to do it. I'd rather correct it than have to ask them to do it. I feel like I am scolding them when I do that. With Dyslexia forms are not my forte.
I have to admit that I took a bus up to Sacramento on Wednesday night (an all nighter) and I was so sick that I took a cab to the airport and flew home. I felt like a homeless person becuase I was so smelly. The ironic thing about that statement is that I am one inch from being homeless. There before the grace of God go I. We were supposed to protest cuts top section 8. I was exhausted and probably looked high from the seroquel I took on the bus. It was a terrible experience. I am still recovering. When we got to Sacremento at 6:00 a.m. they dumped us out on the steps of the capitol and it was very cold. After an hour there we went to an old independent movie theatre and we were supposed to use the restroom there and get cleaned up. There were too many people all crammed into one space and we really couldn't wash ourselves. I felt sick to my stomach from taking the Wellbutrin at night and I thought I might explode. I just realized how ridiculous this all sounds. Never again.
I am looking forward to moving on Wednesday; but I guess along with getting the apartment came being broke. I paid all my savings for the deposit and the paycheck I received today is going to pay the movers. Also, I borrowed money against my direct deposit, so I really won't have income until the fifteen of June. I decided to cash out on my retirement plan with the school district. I should see that towards the end of June.
I guess that means I won't see my therapist until July. Kaiser offered therapy, but I'm not sure if I want to start over just now. The current therapist admonished me about the liver damage. She said I should have gotten the blood tests. The Dr.s didn't order them though. I think they are negligent. Also, she turns everything into something psychological. She thinks that my fatigue is just depression and my hunger is just an unmet need. I'm so tired of people telling me that I am fine and to basically shut up about it. When I have a name for it, then I will be able to show them. My mom promised me part of her liver if I need it. I thought that was so surreal, to discuss this possibility.
I put an ad for Project Return in the local free newspaper that comes in the mail; but I've only received two calls since it was issued on Wednesday. I'm thinking I'll have to advertise in The Daily News instead. Maybe that would have more visiblilty.
I'm in a new relationship now and I am afraid of his reaction when he learns about my illness. Also, I had a tubal ligation because of the meds and I don't know if he will be allright with that. Sometimes it is hard because my family is not traditional. So I have to come out of the closet on three or four different issues. You never know just where a man will stand on all these things. Everything could be really great, but then you drop a bomb and that's the last you hear from them. The question is how do you know when it is time to tell? You have to find the perfect moment, or maybe just the perfect guy. A person has to be mature and educated to tolerate what comes with this package.
I wanted to say thanks for all the comments; I appreciate them. Melanie, thanks for the poetry. I really enjoyed it. To C. (FKahlo), thanks for the good info on section 8. I won't get a certificate until 2007 at the earliest. I found an apartment. It is a little expensive; but I'm thinking about cashing in on my retirement account with the school district. Also, I called my social security representative to get help writing a pass plan. I'm considering taking a course for medical transcription. I don't know how fast I type though; that's the only thing. I am dyslexic when I type.
Anyway, I'm writing a play on the sad state of affairs for the mentally ill. It is about oppression. I'm gearing it towards arts patrons. Maybe I can educate people a little bit.
I am going to Sacremento on the 26th to a rally against budget cuts for services for the disabled. I think that I would rather go out of my way to catch a bus with Project Return than to catch one nearby with the clubhouse. The staff at the clubhouse is not mentally ill; and they are very condescending. I don't think I can stand that treatment for 24 hours.
I don't know all the results for the blood tests yet. I know that my glucose was normal and so was my thyroid. That's good news. I don't know the Creatine or the Cortisol results yet though.
Yesterday Project Return held their annual awards picnic in San Pedro. A few of us hiked down a cliff near the ocean. It was very fun.
I only went to one meeting last week. I have to go to about eight more before the end of the month. There will be at least three meetings downtown. I caught the metrolink last time and it worked out well. I am planning a regional event to the Skirball Museum for a free concert and a movie. I think it will be fun. I'm considering doing a regional event for the North Hollywood (No Ho) Arts Festival; but it is right around the time I am supposed to move. They have lots of free theatre. They are mostly one act plays. There is also music and dancing there.
I want to take a group of people at a board and care where I work to The Victory Clubhouse by public bus. Many of them never leave the intersection where they live, and are afraid to take the bus. Part of this has to do with missing mealtimes. Five p.m. is dinner time; and if they miss it they will go hungry. At lunch time they can ask for a sack lunch. Also, many don't have bus passes because they can't afford them. They are given maybe $100 per month for living expenses and then they just suffer after that. I think they should have to give them more money and a free bus pass. People go in and they just deteriorate. I would have deteriorated in there too. All of their power was taken away. They can't afford essentials. To me they are homeless. I would really like to ask a church to sponsor them. Like say the church collects used clothing, they could then donate them to this board and care. They also need toiletries. They don't give them enough toilet paper even. My friend has no towel to dry her hands in the bathroom. I don't think I told you how I reported the board and care for violations of patients rights. My friend is a little upset with me because they know she gave me the information to report. She feels intimidated by them and is worried they will kick her out causing her to be homeless. She is afraid to report acts of sexual harrasment that another client is committing against her. Her parents are not stepping up to the plate and being advocates for her. I go and trim her toenails because no one at her facility will do it for her. She was made obese and diabetic due to the medication. Now she needs cataract sugery. She is only 37 years old. I know a client in the facility who needs glasses, but isn't getting them. This place has a good reputation too. My case manager yelled at me for reporting them because she was worried that they would be shut down. She figured they were better off there than homeless. I don't see my case manager anymore. To me she is oppressive.
I was reading the newsletter here on schiz.com and wondering what the types of schiz. are. It was saying that there are all these different forms and that they know the genes for one form that is found in people that are more able to be rehabilitated. That was interesting. Also, I was reading an article found on a link to The San Bernadino Sun that the developmentally disabled have better advocates than the mentally ill do. I know that's true because I'm always getting calls and e-mails from a union rep from SEIU who asks me to go lobby or rally here and there for the rights of the developmentally disabled. They attributed the difference in advocacy to the stigma of the mentally ill. With so many mentally ill people why don't we as the mentally ill and our families advocate better? I figure that say in a family where a second cousin, and at least two cousins are mentally ill, this has affected maybe eight sets of Grandparents, six sets of parents, at least six siblings and who knows how many aunts and uncles etc. But no one is admitting they have someone with mental illness in their family. If everyone came out of the closet, then maybe we could stop the hatred and discrimination inflicted on mental health consumers in the media and in many societal instiitutions. Maybe the famous people could be first. I mean, everyone loves them. No one will stop buying movie or concert tickets because someone advocates for their mentally ill relative.
Enough on that. I am freaking out because I have a fasting glucose and cortisol test at 8:00 this morning. It is 6:22 and I am shaking and in a cold sweat. They don't know what is wrong with me. I finally got my health benefits at work, so I have Kaiser, and my health care will be integrated now. That will make life easier. They are hypothesizing that my liver is damaged from the medications I've taken for 13 years or so. They will test that today as well. Thank God for Access, so that I can get a ride there. I will eat at the hospital when they've finished with me. I kind of just wanted it to be a brain tumor so that they could just cut this out of me. I was kind of fantasizing that they could remove the crazy part of my brain too. I didn't want a complete personality transplant or anything, just maybe the removal of certain aspects of it. Oh well, not this time. I wonder if I can have coffee with nutrisweet in it. I'm having a panic attack but I feel really tired. I woke up at 1:30 a.m. and haven't slept since.
I am disgusted by the L.A. Times article on Medi-Cal fraud perpetrated by wealthy senior citizens in California. They are allowed by loopholes in Medi-Cal laws to transfer assets to a family member and then to receive free nursing home services. To get Medi-Cal you must have no more than $2,319 in assets. California loses $150,000 per year on this fraud. This greediness goes on while poor disabled Californians are suffering severe and painful cuts in life sustaining services. This happens in other states as well. I work and my tax dollars are going into the pockets of a wealthy family! These selfish rich people exploit the system because they figure they have payed large sums of dollars into the system; so why shouldn't they get a free ride? First of all the rich don't pay a sufficient amount of taxes due to folks like George W. Bush who engineer laws to give tax breaks to the wealthisest amongst us. So we are getting screwed twice. This simply doesn't add up.
On another note does anyone think we could sue the FDA and or the pharmaceuticals for creating or allowing the dispensing of toxic drugs? I was just noticing in an old Schizophrenia newsletter that Haldol is known to be toxic. We also have known for years that Clozaril kills. Now we know that the atypical antipsychotics cause diabetes. I know a woman whose daughter died due to Clozaril. I have at least four friends who have diabetes due to the new antipsychotics. One friend who is diabetic now has cataracts on her eyes due to the diabetes. She is obese because of these drugs. I am worried about her. People die from diabetes. I'm upset too by Tardive Dyskinesia. I don't think I will live another day without this strange and painful disorder. This is madness and there is definitely discrimination against mental health consumers by NIMH, demonstrated by the lack of studies done to find new treatments for mental illness. Let me know what you think.
Misnomer
I stumble in a haze
seeking clarity and a reprieve
from this disease.
I have the need to grieve.
I cry over the treacherous pain,
I'm not stable, I'm a wavering loon
armed with a full bottle of psychotropics.
Detesting the label, the misnomer
that makes me furious,
all the while, I look sober.
These teeth marks in my arms
are evidence of your insistence
on routing out some new disease,
the needle probing and curious.
Heather Wilcox
Hymn
The old raw rice grain
I stepped on
is like a thorn in my foot,
I am reminded of my need to leave.
The spider web roof
can't keep out the rain;
my sunlight omniscience
knows your soul.
You taught me that
he who increases knowledge,
increases sorrow.
You sing your words like a hymn and
leaving I trip over devil's bones.
Heather Wilcox
The Toll Booth
Gibson was down
six years
for robbing a toll booth,
and moved
from hospital to hospital
for the criminally insane.
He worked
for sixty cents an hour,
in a kitchen,
washing the dishes
of serial killers
and child molesters,
before being exonerated.
The man,
fifty years old,
with wavy, silver hair,
disheveled like his beard,
speaks of his new
Bible reference guide;
it never occurred to him
to question
How God
(if there is one),
could allow this to happen.
His intelligent, blue,
Missouri eyes
have forgotten working the farm,
as he sits rocking,
waiting for a free cup of hot tea.
Heather Wilcox
Body Song
Her voice is like a blessing bell,
calling him,
a body song which
fills the big empty.
The spirit of gravity
reminds him
we are captives
in our glasshouse atmosphere.
Her name melts on his tongue like the
soul of an intention inside a Eucharist.
His desire is as skinless as a sunbeam
through a stained glass window;
but she is as needy as a mirror and her
eyes as bright as dimes.
Feather brained she waits for his return
not knowing how to love.
The long drives, the dashboard confessions
bring a soft focus to life
and a sleepy melancholy.
Heather Wilcox
Sounds like Dyslexia
Is it mottled mushrooms
and mashed marshmallows;
or is it a yellow pad corn
and carrots crunchy orange?
Isn't an accent just an accident?
Did she lose her elasticity or her ethnicity?
Did the roach roast?
Was it apostrophe or hyperbole?
Maybe it is just synchronicity,
serendipity, synecdochy or
Does it sound like a symphony?
Heather Wilcox
Lost
Come away with me,
we can catch shooting stars
on our tongues,
wash our hair
when it rains and comb out our bangs.
Then brush our teeth with an ax,
because we have so much plaque.
We can carry the water in a
quart sized berry picking basket,
singing a tisket a tasket.
We can eat marginalia
like this poem,
and breathe miasma,
since we don't have asthma.
If a screwdriver can start a truck,
then maybe the hen will have luck,
when we sell her a lottery ticket.
A golden egg, the hen can't fake it.
Heather Wilcox