Essays, Stories, Photos, Comments by Someone Living With "Mental Illness," HIV, Good Care, and Homesickness (These are not the only things I write about.)
ABOUT WHO I AM:
+PHc
San Francisco
I'm 41. I've had HIV since I was 18 (1986). I live in San Francisco for the particular medical care I believe my survival depends upon. I'm far from family, never married, no children. I'm doing the best I can with more difficulty from mental health challenges (and isolation), than with physical health problems - other than from the medications for both. I work regularly for a writer in exchange for help as I need it - like car rides and cat sitting). And am working toward being involved in more volunteer work like I was in the past.
San Francisco
I'm 41. I've had HIV since I was 18 (1986). I live in San Francisco for the particular medical care I believe my survival depends upon. I'm far from family, never married, no children. I'm doing the best I can with more difficulty from mental health challenges (and isolation), than with physical health problems - other than from the medications for both. I work regularly for a writer in exchange for help as I need it - like car rides and cat sitting). And am working toward being involved in more volunteer work like I was in the past.
My Medical History
I'm working on it, but some of the events of my history - at least some of the events of my HIV history - are listed in this entry. It's impossible to say whether my diagnosed mood disorder led to the risk behaviors that made me succeptable to HIV exposure so long ago - or whether the traumas leading to being diagnosed with, and living with AIDS present themselves in the diagnostic form of a mood disorder. Both problems (if they can be differentiated) are life threatening, and longterm, and I'm relieved to discover that writing freely here helps to alleviate the suffering of both, for me.
MY REASONS FOR WRITING:
My Reasons For Writing Here
The longer I survive, the more I don't recover from the idea(s) that I am, and am not, dying from AIDS. One expression of that contradiction is that I feel driven to share my life and tell my stories to the children and grandchildren I won't be having. So I'm telling them here - more openly than would be possible otherwise - in form I hope will find some kind of connection to life in time.
I hope, regardless of reciprocation, that giving my experiences here can be healing or helpful, or company to someone else - or, at least, be distracting in a good way for whatever reasons.
I hope, regardless of reciprocation, that giving my experiences here can be healing or helpful, or company to someone else - or, at least, be distracting in a good way for whatever reasons.
Comments
Comments are invited, please. Anonymity included. I want to respond to all of them either in the comments boxes or on liked sites, but I have trouble keeping up with everything I do; sometimes it takes me a day or two - so please check back. (I also try to improve past posts and photos for when I have not been thinking or articulating clearly, or have not yet been up to saying what I want to say on a present day, so check back that way, too if you want. The whole thing of it is changing slowly.)
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CONTENT OF THIS BLOG:
Cast of Characters
- KD - lives in New York; traveling uncategorizable musician and friend; boyfriend of five years six years ago at a very different point in my life; almost daily phone support; power of attorney
- Unidentified, infrequent, longterm, Belgian "FRIEND"; He works as a relief coordinator for the International Red Cross; has a new flat in Antwerp but travels as much as not at times, sometimes to areas of natural disaster (Pakistan earthquake), mostly to high conflict zones (Sudan, Nepal, Isreal, Chad/Darfur, Kabul...). I see him for an intense week or two, every year or two. Most of the photos in Return From the Desert are his, as well as the San Francisco skyline I used for the header of this blog.
- SOPHIA ("So" to KD) - my fifteen-year-old cat with kdney disease; requires a lot of medical care; extremely strong bond
- My "CAT-SITTER" - lives in Santa Rosa, California; also uncategorizable very-long-time-ago-ex-romantic friend, and most-local emotional support; ex-journalist, writer, horticulturalist, Berkeley Extension Instructor, blogger; offers me some work for bartar
- (Other characters explained in text, or by context: FAMILY members - all faraway, FRIEND in DC, PSYCHIATRIST and THERAPIST at AIDS Health Project, DOCTOR at Ward 86 San Francisco General Hospital, NEIGHBORS, and LANDLORD)
- Ghost of DALI (unexplained)
Archive
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2008
(27)
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January
(18)
- Minutes - edited for clarity, with relevant addend...
- Application
- Rainbow Wishes
- 12 Days Left of My Own Mistimed Lent
- Kiss My King Cake
- Geodon and Insomnia
- Work
- Telling Then
- The Telling Now
- Breaking the Shameless Lions' Rules
- The Shameless Lions Writers Circle
- New Confidentiality Question
- "'Results' Results" Results
- "Results" Results
- Gallo's Humor
- Results
- Tested
- Frayed
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▼
January
(18)
Past Posts I Hope You Read
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SOME PRESENT LIFE, PSYCH AND PHYSICAL SITUATIONS:
Goals and Wishes (listed here just to incite myself. You can skip this part.)
- To finish my Bachelor's degree in anything - Update: disrupted again, for now - maybe a class
- To be a summer counselor at Camp Sunburst for kids who have, or have lost an HIV+ family member, or who are HIV+ themselves
- To find, or start a support group for longterm (20 year+) survivors of HIV - open to any kind, color, gender... of person who qualifies on the one basis of longterm survival - (Would love help or suggestions about that)
- Tp participate in AIDS Health Project's open writing group next time it's open - (am on waiting list)
- To access a copy of Takako Lloyd's 1996 TV Asahi documentary covering my friends and me living with AIDS then - Takako was living in Sydney, and working out of Tokyo. - (Would love surprise help with that; I'm afraid of asking)
HIV+ (2/08):
- 22 years
Blood Counts
- (1/08) T-cells: 460; viral load:undetectable
- (9/07) T-cells: 449; viral load: unknown
- (6/07) T-cells: 364; viral load: undetectable
- (7/97) T-cells: 0 (- which technically means: low enough that there is none in sample vial to detect - not none in your body. You can not live without T-cells.); viral load: through the roof, but undetectable only because technology did not yet exist to measure it.
My Current HIV and Psych Meds (in case the list makes anyone else feel better)
- Norvir (antiretroviral)
- Reyataz (antiretroviral)
- Truvada (combo antiretroviral for Viread and Emtriva)
- Gabapentin (anticonvulsant, also used for mood stabalization, and for neuropathy)
- Geodon (antipsychotic, also used for mood stabilization)
- Methylin (for concentration difficulties)
- Wellbutrin (antidepressant)
- Valium (as needed for panic or debilitating anxiety)
- Ambien (sleep)
- Sonata (in addition to Ambien, when Ambien is not enough to sleep)
- Very good coffee and cheap wine in moderation - Update: no more wine allowed
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BLOGROLLS, FORUMS, AND SITES:
HIV/AIDS Blogs
Inclusive HIV Community Site
HIV & Mental Health Forums
Mental Health Blogs
Other Health Challenge and Wellbeing Blogs
Writing & Photography Blogs
Blogs from New Orleans
Friend Blogger and Blogger Friends
Random Blog & Site Mix
QUOTES AND POEMS THAT MATTER TO ME:
"To look life in the face...always to look life in the face. To know it for what it is. To love it for what it is. And, then, to put it away."
- Virginia Woolf in The Hours
- Virginia Woolf in The Hours
"It's not that the DNA in a virus wants to get itself copied. It is just that, of all ways in which DNA could be arranged, only the arrangements that spell out the instructions 'Spread me,' spread. The world becomes full of such programs....they're here because there here because there here."
- Richard Dawkins
- Richard Dawkins
Untitled Here
It's a strange courage
you give me ancient star:
Shine alone in the sunrise
toward which you lend no part.
- William Carlos Williams
you give me ancient star:
Shine alone in the sunrise
toward which you lend no part.
- William Carlos Williams
I(A
I(a
le
af
fa
ll
s)
l
one
liness
- ee cummings
le
af
fa
ll
s)
l
one
liness
- ee cummings
FAVORITE EPITAPH (from a cemetery in England when I was 14):
ENOUGH
ENOUGH
May you live with ease of heart. May you be happy. May you be healthy. May you be peaceful. May you not be lonely.
12 comments:
Now those are two loaded questions!
My skills and expertise ( no "other" about it) - is describing life experience.
And there is about as much space on this form under "Life experience. Describe:" to put this blog address.
I have learned that my life's experiences are my real teacher and I learned much more than I learned from any education I had.
*see attached
jenji
can you attach more to the form? something comical about having you write something so profound and meaningful in such a little space.
so how are you doing today? i am thinking of being a hermit but i am not quite sure. just thought i would say howdy before i switch on over to my emotional recluse mood.
Whimsy, Thank you for understanding why i put the photo up.
Jim, You saying that really helps. I did get myself thoroughly together, and went to the meeting and applied, and came away feeling, pretty confident that I can get on the council, hopefully confident that I can, depending on what comes up, I might be a uniquely voice on it, but that, selfishly - being on it is not going to "cure' my feelings if "illegitimacy" as a confusedly disabled person participation did a long time ago when I was more evidently sick (more physical, less mental - so I could see it on paper (on my lab work.) This feels like work that a certain percentage of consumers must do, and it might as well be me now, now it is my due to serve at some point. I should - and probably will - write this in a post rather than a (in addition to) this comment. BUT thank you for saying EXACTLY what you said, because it is formal education that I believe would give me that since of legitimacy that I want, but isn't necessarily more of a "teacher" than other life experience. Thank you.
Jenji! I couldn't open up whatever was attached! I'm curious.
Merelyme, Yes. Yes. It wasn't a problem. Thank you. i was just appreciating the irony. In my sidebar I had/have a list of goals and wishes posted just to push myself and one of those was assembling a bio/resume for something else that mattered to me (not an easy task, as I haven't kept records, not thinking during the time period I accomplished the most that i would be living long enough to need them. I hope your possibly eminent reclusive mood doesn't mean anything is wrong. (I'm well aware it doesn't always.) But you put yourself out there so much emotionally I can see how it might be a good idea sometimes, even though this gives back too. Thank you for the warning and the comment. Be well! I will be thinking of you either way.
life experience: made it to age ____
other skills/expertise: equal to other survivors
[that's meant to be funny]
glad you have a chance to show your stuff, hon!
Laughingwolf, I don't know how to take that at all - any of it - but I'm glad if you are glad I have a chance to take on responsibilities to the best of my (unavoidably expanding) understanding, that I feel I owe. - And can feel some relief of human involvement in the process. ? (besides through this computer.)
lol
Oh, I didn't mean that I had something attached for you to read. It was sarcasm.
I meant, that had I been asked about life experience/expertise/skills I would have (and I have done this before) simply made my own little box labeled SEE ATTACHED, as in see attached form and checked it off b/c my answer would have been too long to fit in a neat little package.
As you know, life experience is an understatement for some of us.
That's all.
jenji
please note: it is intended to be funny, to help bring a smile to your face :)
Laughingwolf, I don't know how old you are but, I DO think appreciate the skills and expertise required to make it to mine! - by anyone. The more I try to be re-involved the more I appreciate all the things so many people accomplish everyday despite their problems - that I can't imagine accomplishing - without any of my hindrances! Seriously. People mistake my trying to raise awareness about certain difficulties as not appreciating that we all have them, when that couldn't be further than the truth. It's just that the lack of understanding of my versions can be soooooo isolating. But your intending to bring a smile to my face makes me happy, and makes it all a little easier. Thank you.
Jenji, LOL. That's what I was working on already. I was just appreciating the irony of an application form for a city coucil that requires 51% of members to be relevant healthcare consumers, obviously many disabled. That space couldn't contain the life experience of your spider.
glad if i can bring a smile to your face, hon... even if it's temporary :)
yeah, i'm older'n you, so have fought battles of all kinds myself, and will continue as they crop up... surviving them is 'good enough' for me
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