Thursday, January 24, 2008

Rainbow Wishes

Thank you for all the rainbows. I tried several and found I may not be quite ready for a rainbow just yet. Testing things out. Although this is the idea that I couldn't expand size of). (But has to be pale enough for whole template, too. - but might be, as is, with this light grey text.) I'm collecting options in a future header folder.

I love real rainbows. And rainbow symbols, when they stand for inclusion.

My cold (heavy duty cold) since Saturday has started to lift just in time for my downtown job tomorrow. (And I am not taking my 80 mg Geodon tonight. I'm not doing that again. I'll take the lower-dose ones during the day, and deal with the energy roller-coaster. But I want to sleep tonight, and wake up in the morning, and go to downtown work, and play normal for a day.)

I did something very bipolar today after being bed bound for three days. I started the process of running for a city council position (the San Francisco HIV Services Planning Council), in vernacular, the Care Council.

I had a good phone interview today with the council's training manager. The role wouldn't require more work than the board of the San Francisco AIDS Foundation, which I handled well for six years, several years ago. I can't regulate enough to keep up with any consistent day-to-day work, and I feel worse mentally now, but I do have abilities, and a lot of relevant experience, although I would be a minority voice in the extreme since I'm not in line with any women's HIV groups that I have found, but I believe what I have to say matters and isn't being said anywhere, and not speaking is making me sick, maybe sicker.   And have been in the past capable of pulling it together for intensely involved brief spans of scheduled time, and this would require one three hour meeting a month, and one two hour committee meeting a month plus retreats - same as the Foundation's requirements. It is more public in that the three hour deliberations are open to public audience (whereas the Foundation had private meetings with scheduled public commentary), - but this would be less public, in that it wouldn't require media representation, formal public speaking, and fundraising schmoozing with way too many, way too important people - which was as exhilarating as it was confusing and destabilizing at the Foundation.

I don't know if I am up to the kind of involvement I threw myself into when I thought I was dying (years ago). But it also may be that I need that kind of parsed intensity of involvement for my well-being, like Jenji's quoting Hellen Keller in yesterday's comments that "true happiness comes through fidelity to a worthy purpose."  It is my nature to do things in the extreme or to retreat in extreme. I need to be able to coordinate my "natural" or "ill" rhythms with fidelity to worthy purpose, to be at peace.  I thought writing here was to some degree a worthy purpose I could maintain fidelity to, but am still affected by the criticisms I was offered that what I write is just self-serving.  Even though others have said otherwise.

I was emailed a five page application to fill out to bring to the Care Cousil's next meeting which I am to witness on Monday (at the LGBT Center which does not feel appropriate to me, although they are generous with their space to other groups as well, including women with HIV/AIDS regardless of sexual orientation), (but this is usually in a city building in the Civic Center) - and I don't even have a printer.

I am running to raise awareness of demographic discrimination and to "fight for" -[my Lent - my Love]- "work toward"- inclusiveness in HIV mental health, social support services, and community building for people who do not already have communities - for (ultimately) creation of an HIV/AIDS community of inclusiveness of every single human body with HIV in it.

I believe in discrimination.  I don't believe "discrimination" - meaning to be discriminating, is a bad word - and I believe it is appropriate, necessary, and right for epidemiological prediction, and prevention programs and outreach to target specific groups. But once a body of any human kind has HIV in it, I do not believe it is alright to exclude them from human need services on the basis of not fitting a demographic category of a group determined to have your needs in more number.

And for, specifically and personally, a UCSF AIDS Service Organization (AIDS Health Project) funded to serve HIV+ PEOPLE to deny a person coming in for an HIV test without even offering her individual risk assessment, because she doesn't fit the highest group risk demographic no matter what her risks may have been, when a possibly low risk gay man is offered the medical procedure he seeks no matter what, is unethical and unconscionable, - and blamed, along with other things seeming like problems to me, by the agency, on the Care Counsil which determines allocation of funding to the service agencies.  So if I don't have the leverage of at least being an effort on that council my words are ineffectual at that agency (which just, over the Christmas holiday removed the women's restroom.  There is now a unisex/disabled restroom where the men's room used to be, and a men's sign on the door of the women's room I have gone to for years to collect myself after hard appointments before facing the outside world.  I'm sure, now, that there were practicalities involved in that decision making, but at that day, coming in from a storm to wipe of my face before an appointment, in a restroom that rarely had anyone in it, a kind of unintended sanctuary space for years, and to be told, "No," from down the hall, "Wait you can't go in there," by the receptionist, and see a big brightly colored men's sign in my face, was kind of a last straw.  I'm not going to say what I did.  
I am not being pessimistic.  My Lent - my Love.  And AHP has supported and stood up for me on personal terms more than any other agency has. And provides valuable services to the people it provides them to, including psychotherapy and psychiatry to me.

What I mean is (to continue in non-negative tone is): HIV testing  and counseling service programs at "non-exclusive" AIDS Service Organizations could be redesigned and expanded such that funding be allocated to advertise testing and test counseling  to highest risk groups, as they are, but such that no woman is denied and referred away who comes in anyway and walks up to the front desk and says, "I need an HIV test" without at least assessing and counseling her first.  Maybe she has more than good enough reason to think she's infected.  Maybe she's never going to work up the nerve to go ask for a test again someplace else.   - But will keep on thinking it.  - Will quit going to doctors altogether.  Take her while you have her. 

I am the only HIV+ woman I've ever heard of who doesn't care about segregated (always to be lesser here) women's services, although I respect the preferences and needs of women who do.  For whatever healthy or repressed, angry, stubborn, too hurt, or random reasons, - what I am passionate about is inclusiveness of HIV services that do pertain to human needs indiscriminately.  And I better stop here with that. 


laughingwolf said...

your objectives a laudable, hon... hope you get on that board and get to add your voice to the goings on....

anonymous said...

Hello +PHc. I think this would be a great thing for you to do. I relate to many things you said in this. And the bottom line is, my preception is, you are a problem solver for HIV patients and that experience is priceless.

+PHc said...

Thank you Laughinwolf for saying my objectives are laudable, I'm afraid of not being able to keep up and have reliable enough concentration.

Anonymous, I'm especially glad you're here and sorry you relate to many things I said, however you do. I'm afraid my experience is no longer seen as relevant here, and that my efforts will be stifled in a way that's going to make me worse. That's why I haven't tried this earlier, but my anger, and guilt, just keeps getting more compressed. So I'm going to try. The Counsel is at capacity right now, so it would be a contest.

Dream Writer said...

Love that title! My book! :) I send you many wishes and good dreams. I cannot even imagine what you are going through..I commend you for your strength and courage... Speak...Show your have so much to offer.

Anonymous said...

Ward 86 and AHP have a standard procedure for addressing valid complaints: psychiatric labelling and drugging. Of course, given your med list, they have already started to marginalize you. Any objection you express, no matter how valid, will be considered "part of your psychopathology" and used to increase your antipsychotic medication until you stop complaining.

Jim said...

Man do I understand and when life gets tough and we begin to press against the edge of our comfort zone, we press on towards our goals regardless. We just need to focus on today and tomorrow. I like this quote when I read it, "Refusal to take risks makes for a life of mediocrity at best." That explains it well.

I have learned that my pain was productive because it made me doing what I needed to do. My thorns are not necessarily evil, but rather, my motivator to live. Whatever happens,my own determination to advance against all obstacles.

I truly believe you can do it regardless how you are feeling. Life is what all about and not giving up.

Hugs, Jim

+PHc said...

Dream Writer, Thank you for good wishes. I forgot that was the title of your book. I'm just going through life the best I can like everybody else. My challenges just feel particularly out of synch. I don't want to "show my voice" unless it's going to mean something. I'm burnt out, tired of all this, tired of feeling like I'm speaking to walls, but need to be participating in life, and this is what I have to work with. And have this sudden, scary, impulsive burst of needing to throw myself back in again.

ANONYMOUS WHO WROTE ABOUT WARD 86 AND AHP, Could you PLEASE, PLEASE write back here or email me at - because I didn't understand if you are trying to warn me about them? or criticize me for complaining? I didn't understand what you meant about the valid complaints. "Valid complaints" about the medications themselves? or valid complaints about real psychological problems that were beyond usual before treatment that they are making worse with all the chemicals? Or are you criticizing me that I am complaining in a way you think is unnecessary in a way that is psychopathologizing myself through them?

The med list scares and confuses me. A few of the medications I know I can't function without (I HAVE tried for long periods of time, and I and people who have known me over time know that I was much, much worse before I ever took them in the first place) - BUT the rest are intensely good and bad and I don't know what to think about taking them. They increase my quality of life, but impair my ability to interact in life.

However - I know from my HIV history that meds sometimes do not work except in conjunction - sometimes complex conjunction and I have learned recently, through this blogging with people diagnosed with other things that it is not at all uncommon to prescribe psychiatric medications in "cocktails," too. So I can't think of it as some kind of conspiracy of AHP and Ward 86 (which isn't involved in that part of my care except the one time they had me involuntarily hospitalized for undoubted severe paranoid psychosis. Are you saying you think that valid psychosis was the result of imbalanced over-prescribed psychiatric medications? Because there is no doubt I was psychotic for a couple months last year - Or are you not believing that and saying I'm just complaining?

I've received much better psychotherapy from AHP than anywhere else and wouldn't want to give that part up. Ward 86 I go to out of habit (10 years) and have received good HIV care.

Please let me know what you mean.

tati said...

I don't know how to send pictures this way, and I didn't want to clog up your comment box, so I've posted a story and pic for you at my blog.

I love you

Merelyme said...

hey there...i think you sound really good lately. you have some clear goals which sound do-able. you are really thinking ahead too. i know for me...i come up with all these things i want to do when i feel well but then the moods come and i have no energy to do all those amazing things i had the strength and stamina to do before my crashing. so are very passionate yet logical in your approach.

and please don't stop are helping here too.

whimsicalnbrainpan said...

I'm glad you are feeling better and I really hope your get that position. I think you could do a world of good.

Sarah said...

The Care Council sounds like a great forum for your work for inclusive HIV services. I'll be so interested to hear your reaction to the meeting Monday. You have proved yourself able to pursue very challenging and lengthy projects with incredible energy. Maybe finding your voice in this council will increase the strength and stamina that have eluded you for a while. I hope so. Good luck with the application process! Whatever happens, it's crucial to continue writing, my opinion. Love.

+PHc said...

Jim, Your quote, "Refusal to take risks makes for a life of mediocrity at best" pertains to me in exactly the opposite way to me as it does to you. Impulsive, compulsive, sometimes extreme risk taking, (as a result of what I believe was due to psychopathology I've had intermittently my whole life) is the what created the life shaping events of my life, and to me, a life of mediocrity is exactly what would be a life at best. I want a husband/companion/friend who is on equal terms with my abilities, I want meaningful work that pays my keep, I want a basic privacy/friendship balance with people who can come over to visit, and a table big enough to cook simple dinner parties for them, I want "normal" range ups and downs, and a "normal"sleep cycle and the concentration to be able to read a book. The things I love about the life I have are the "mediocre" pleasures which I could also list starting with my cat. I should probably do a post for my "Lent" of non-negativity on mediocre pleasures. -And I don't even remember what you mean by "comfort zone."

I'm just trying to live a meaningful, steady, life with what I have, and it is a real problem that I tend to over-commit (take risks too big that set me way back) (and over-express, take risks to the point of exhibitionism with strangers by not cultivating nearby friendships to confide in).

NOT that many of these "virtual" friendships aren't very real and dear to me - like yours.

Tati, Thanks, haven't looked yet. I don't know how to send pictures or make links in comments boxes either.

Merelyme, I'm sorry that you have the experience to understand, BUT THANK YOU FOR HEARING ME. It makes your encouragement that this is doable mean more in real terms than other encouragement - which is also valuable in feeling energized and cared about and believed in in a different way.

(And thank you for hearing telepathically the unspoken edge of giving up writing again.)

Thank you Whimsy, If I don't get it this time since they are at capacity, I can still attend the public meetings, learn from them, and be a visible presence for the next go round. (And I learned from other boards where I was minority vote that it is possible to affect quality of conversation to some extent just by being at the table (or maybe in the room) as "who you are," or living the circumstances you do, - just by being visible with watchful eyes.

claudine said...

Hello +PHc, I am a first time visitor to this blog and I think your words and actions are amazing. I volunteer at the only residential AIDS hospice in Texas (not able to say where) and it is a struggle to get people to care let alone listen. Be a voice, stay strong.....
I will be visiting you again!

+PHc said...

Claudine, Welcome. I can't believe there is still only one. " Thank you for doing what you do" goes without saying. I am very familiar with Texas. I haven't checked over to see if you have a blog, but if you don't - I care, and am happy to listen to long comments or venting, or anything you would like to express here. Did you read my post " Jerry's Story" about volunteering in an old house hospice here a long time ago? The post is September 7 (I think) and linked under "Posts I Hope You Read" under archive in sidebar. Thank you for showing up!

+PHc said...

Claudine thank you God Jesus You are #1 on my blogroll just from feel of first glance. I would link you right here too if I knew how to do that. Thank you. It's a hard line knowing when to tell about other people's most vulnerable stories to respect their privacy and dignity, when sometimes writing about it is necessary and can be absolutely the most powerful way of honoring them. But I should be writing this in YOUR comments. I will be there tomorrow. Thank you.

about jenji said...

Your observations, thoughts, opinions and experiences are valuable and much appreciated.

I hope things settle better soon.


claudine said...

+pch, wow! thank you...The residents at the hospice always tell me to never forget them, so I started writing so they could always be remembered. Don't be a stranger, I'll keep checking on you as well.