AIDS Hits Home, another piece of my personal journey with AIDS.

Before I continue in the story of how what happened to me happened to me, I feel the obligation to say that it took me many years and many failed attempts to find my purpose on this earth. In the early days of the epidemic, I was merely a bystander, a scared one - but I did nothing about my feelings or those of my fellows. It was in 1986, when I lived in DC and was planning a visit to my first lover back in San Francisco that the magnitude of what was happening to my adopted community finally hit me.
I called George, whom I assumed would outlive me and all of our mutual friends, and he asked me what I would like to do while I was there. He suggested having some people over for a reunion dinner. I thought that sounded great. Then he asked me who I'd like to see so that he could extend invitations to them. The first five people I named were all dead. DEAD. Suddenly I was out of ideas and not so sure I wanted to do any planning at all. I wasn't even sure I wanted to make the trip, and as it turned out, I had to postpone that trip for 2 years because George had been hospitalized with Pneumocystis three days before I was to travel.

Part of me wanted to run to his bedside, and part of me was too scared to do so. I knew, empirically, that I could not 'catch' Pneumocystis from him, but my emotions took control, making me not want to get near him on the one hand, and jump in his bed attempting to contract his illness and suffer with him on the other. I had very grandiose visions of martyrdom, in a glorified way that upon investigation showed how sad and scared I was.

AIDS had finally hit home and sooner than I would have liked, my best friend Joe would be in NIH, with his brain gradually being devoured by the bug that causes Toxoplasmosis. I had started to include Joe less and less in my life because of his constant denial and dismissal of what science and his doctors were telling him was going on in his body. I found that the more I tried to reason with him about the possibility that he, like myself, might be HIV positive, the more resolute he became about the contrary. To be truthful, he was pulling away from me as much if not more than I pulled away from him over this disagreement. Either way, that fateful day that he failed to show-up for a buying trip in New York, trips he professed to love, I knew that something had happened. I didn't come close to imagining the seriousness of his travail.

I, along with his secretary, and his other good friend Jeff, whom I had not yet met, had been calling repeatedly with no result. Jeff went one step further and called the police with whom he broke in to Joe's apartment. There was Joe, lying on the floor at the foot of the stairway that led to his loft and roof deck. The wall, the stairs, and Joe, all were coated with his own feces as he apparently had a seizure at the top of his stairs, and as it typical in that situation, his bowels emptied during the event. He was alive, yet unconscious, and in the best hands imaginable. When I think about it - I feel like I was there - as I did see the aftermath during one of the cleaning sessions. This is one of the scenes that haunts me during my PTSD moments. Prior to starting my writing again, PTSD had almost faded away. It's okay. I am prepared for it this time around and don't want to ever forget what it was like since if I do I won't be able to tell youngsters about what happened.

I feel so numb writing this, I wish I could accurately describe just how disconnected from everything around me these brief visits to the past make me feel. Emotions affect me so strongly, which really puzzles me. I don't think I am supposed to figure this one out. I just have to stop writing now and honor these feelings whether I want to stop or not. Bye for now.

The new Me - time to start actually blogging

I have finally decided to do my daily blogging as I had planned to do prior to yet another 'am I in or am I out' couple of years landing at Cedars Sinai, which, thank god, I am done with at present. 

I wake up at 3:00am - as my dad did before me and after his dad did before him. I watch - or more correctly listen to the 'Overnight' and 'Early Morning' news broadcasts on the local CBS affiliate as I have had cable TV removed from my house. My productivity was in the toilet, so to speak, with that big color picture box leering and yelling at me about starving puppies and the like - so I yanked it. Here's the rub - antenna TV works just fine for news, etc., so once again the box yells my way for a bit in the am. Ya know what - I get to yell back at it, and I do.

When I hear most of the nonsense that is fed to us listenwatchers (my word), I can't help but yell or can I? Ah yes, the magic of the blog. For instance, the entire Republican Roadshow is more damaging to any of their candidates’ images than all the money spent on ads by the Democrats in the last 10 elections could ever be. Some facts according to Jim:

1. The country is tired of Bushes - period. Bringing 'W' out on the stump is like someone bringing out Joseph McCarthy because he is a good American. George Bush and more importantly his director and controller - Dick Cheney were the most harmful, destructive force ever to plague the White House. Are we forgetting that 'W' lost the popular (and would have lost it all if Florida hadn't been stolen thanks to old JEB's handiwork) election for his second term. The war that did nothing but de-stabilize IRAQ, etc. outside the US and Inside our country, it made a few specific people much wealthier - like the Bushes and the Chen's - while absolutely throwing our nation into a recession that exposed new lows in the character of Bankers, Oilmen and Republican Legislators. I need to mention the little known Cheney (a nick name) Bill that the Republican congress passed that was created by Cheney, for Cheney Family Wealth and nothing else. HOW CAN PEOPLE BE SO BLIND AND STUPID ENOUGH TO ACTUALLY BE CONSIDERING ANOTHER BUSH MEDIATED PLAGUE.
2. Cruz and Rubio or smart-ass, lying punks - who think if they yell the loudest that people will believe the lies. Rubio yelled - 'not in 80 years has a lame duck president had the gall to nominate a supreme court justice' - uh - he seems to have forgotten the Republican demi-god Ronald Reagan who did the same thing. Cruz never answers any accusations - he just smarts off like a sanctimonious pig - but the reality is that he is a young inexperienced punk who knows less than nothing about Diplomacy.
3. Now this one is one I just do not understand - the whining corpulent self-declared Chanteuse - ADELE. SHE CAN'T SING - PIANO MISFIRE OR NOT - IT WAS SHE THAT WAS SO DARN FLAT AND UNABLE TO MAKE EVEN THE 'EAST NOTES' IN HER GRAMMY APPEARANCE. Her songs are all whining miserable pooor me songs - you'd think that she would get the message from whomever it was that she is singing to in that droning tome with the 'called a thousand times' refrain.  How does she make that attractive? She wouldn't have made it past the first audition on Star Search, or any of Simon's shows.
4. One other thing having been a fat kid who got healthy after high school - and happy by the way, I do not understand the celebration of fat people. Take away the look issues, which are daunting - trust me, what about people's health. Carrying around an extra 200 or more lbs. like the sweet black female actress whose name escapes me, is bad for you, your heart, your ability to breathe, your ankles, etc. BY cheering someone’s fatness, we are enablers of the worst kind. It saddens me that this argument has been contorted into a judge not lest ye be judged issue. I am glad now, although at the time it was difficult for me, that my jock judge loved me enough to tell me the truth. So, don't we love any morbidly obese people enough to save their lives?

Support for the new guy

I was recently contacted by a man about my own age - and yes they are still out there. He has just passed the first anniversary of his positive HIV diagnosis. He was asking me if there were support groups for the newly infected these days. In thinking about this - I am aware of a few 'support' groups that are tailored not to any specific subset of the infected community but to those infected in general. These are few and far between to the best of my knowledge. I was recently involved in a general support group and found it useful to the more recent infectees to be able to ask the rest of us what they had to look forward to - what our experiences were regarding meds, symptoms, doctors, etc. I would steer any newly infected persons to one of those groups if they can find them. In a subsequent entry I will include a list of LA area agencies that still offer those groups, and welcome any readers to offer their wisdom as well.

The one area that is getting alot of press is the crystal meth - HIV connection. There are more opportunities to enter one of those groups around these days.

Lost but not Forgotten - where is Carl Bean?

Los Angeles has the dishonor of being the largest city (by far) that no longer has a skilled nursing facility or hospice specifically for the HIV community. The various agencies that failed to support such a facility should be ashamed of themselves. Having been a repeat client of the last such facility, The Carl Bean House, a facility of the AIDS Healthcare Foundation (AHF), I am one among many who morn its lost, as there is no longer a suitable facility for people being discharged from the hospital who still need nursing care that is sensitive to HIV issues. Having also been to several of the facilities currently available can only say that any hospital sending patients to these facilities should be disciplined for abusing their patients. The remaining facilities are equipped with careless nurses, inadequate hygiene and nutrition facilities, and tend to be abusive to patients who are ambulatory enough to speak up for themselves. When I told these things to the aftercare person at a prestigious hospital, she remarked that she had no idea as they had never even visited these facilities. How do you refer someone to a facility about which you know nothing with a clear conscience. My observations are shared by other patients who have shared my experience as well as the ambulance drivers that service those facilities.

My physician and several others I have had the opportunity to poll all share the opinion that closing Carl Bean was a grave mistake as they have nowhere to send their patients. Funding from the county board was cut off because of the political unpopularity of AHF's executive director. AHF had the opportunity to use some of their other funds, or to actively seek other funding, but they chose not to. The county OAPP also had an opertunity to seek another agency to administer the Carl Bean facility - but they chose not to. I understand the need for our support of aid to Africa as their situation is dire, but I find it unconscionable that we send funding anywhere before our local population is cared for. My blood boils when I hear any of the financing news about the Iraq war. Just a fraction of that money would make all the difference in the world to the AIDS community.

The Carl Bean House sits empty - unused - waiting for someone to step up to the plate and take the reins there. Someone could be creative and form a coalition of agencies to step up to the plate too. I offer an open invitation to anyone interested to join me in the pursuit of reactivating this sorely needed facility.

HIV Stops with me James Chud

There is a website that needs mentioning - HIV Stops With Me.com (no spaces) These folks also publish personal stories like my own, along with informational articles, polls, and information about resources for us HIVers. I have recently agreed to be a correspondent for this organization, even though there is an overlap in purpose with my own. I am not in this for the ego gratification, only as a budding activist in a community dear to my heart. I am motivated by a need for recognition of a problem that is being totally over looked - the needs of the silently disabled. Long term HIV survivors might not have opportunistic infections plaguing them at present, yet they remain unable to work routinely because of the litany of symptoms other than infection that are part and parcel of HIV disease. Society's definition of disabled needs amending to be fair to this community. I welcome any and all to throw their two cents in.

The first paragraph was originally posted on 8/05/07 - I am adding on now because I see how incomplete it was.

There are indeed two types of 'silently disabled' people. The first, as I mentioned above, suffer from any one or more of the 'co-morbidities' normally associated with aging in America. Heart disease, diabetes, COPD, arthritis, alzheimers, etc. The interesting thing that research now supports is that men over 50 with HIV infection experience twice as many of these issues as those who do not have HIV. Long Term Survivors also deal with debilitating fatigue that is undeniable. For me it has been shocking. There are good days and bad days, but when it hits, I just can't muster the energy to get my butt out of bed. It is so severe, that I keep a large container next to my bed in which I can urinate when I am too tired to even make it the three steps to my bathroom. I remember that when it first started, I could not figure out what had worn me out so much - the problem was that there wasn't anything to pin my fatigue on other than HIV.

I have been an active person all of my life, so the energy thing hit me extra hard. I can only offer this that if it happens to you, trying to figure it out will prove very frustrating, Just accept it if you can and learn to work around it.

Why I am going to be a nurse

Having spent soooo much time in hospitals, I have had the opportunity to experience many vareties of nursing. There are those who take pride in their work, treating patients with compassion and care, beheiving as true professionals. They are in the minority I am sorry to say. At the risk of appearing politically incorrect, I have to mention the beheivior of the majority of individuals in a particular cultural group that have migrated to the U. S. because nursing in their country pays only $300.00 a week. They picked nursing as their work because of the money, rather than a desire to help people. Unfortunately, their approach toward nursing is to take control of their patients, treating us patients as if we were difficult children that needed to be controled and disciplined. They tend to put their own needs, like shopping and bill paying on the internet way ahead of the needs of their patients. If they are confronted their first response is to give orders like "GO TO YOU ROOM' as if one were a bad child. They also rarely admiit to their actions and use each other to support their stories. There are a very rare exceptions to this situation, but not many. What they can't control, they discipline. Having experienced this time and time again and having spoken to others including nurses with the same experience, I feel secure in my description here.


Their treatment is infuriating. After years of doing nothing but tuffing it out, I now go directly to nursing management and have my nursing assingment changed. Unfortunately many others just sit and take their lumps. I hope my approach to nursing is just the opposite. I am doing it because I want a purpose to my life, and helping those who face the challenges I have faced only seems fair.



The best nursing care I received was at NIH in Bethesda and the various university hospitals to whom I owe my very survival. I have never felt as safe as when I was in their care. The cultural problem that I mentioned is like the proverbial elephant in the living room that few people feel comfortable mentioning for fear of reprisal. Heck, I have nothing to lose here. I only hope that some change is made even if the change is by baby steps. Obviously, hospital patients are in a uniquely vulnerable and helpless condition. They seek and deserve our help.

How you know you have been in hospital too long

In case I didn't mention it yet, I started this blog from my bedside here at Cedars Sinai Medical Center in beautiful Beverly Hills, California. I have now been here for 2 weeks shy of 4 months. Yes, FOUR MONTHS. Trust me - I have been here too long.

Some background is appropriate. In 1987 I entered a drug study at the National Institutes of Health Bethesda Maryland. I thought msyself quite fortunate to have been selected for one of the studies as admission was extremely competitive and studies were about the only game in town other than high dose AZT therapy. My study was for a combination therapy involving high dose AZT along with high dose DDC in combination. The side effects experienced by all of the study participants were daunting, but endurable - and of short (3-5 day) duration. I, however, had a unique reaction as all of my joints became swollen up and frozen solid. I was paralyzed. About two weeks after the cessation of the medications my body unfroze and I was released from the study. Unfortunately I was left with a legacy of cartilage decay and degeneration necessitating surgeries to repair most of my joints and fusion of 20 levels of my spine along wihe the insertion of supportive hardware. I am now at the tail end of the spine repairs and am dealing with the resolution of a stubborn post-op infection. Suffice it to say that enduring the control issues of certain nurses and the carelessness of others has been a challenge. Thank god for those few gems who treat their occupation as a profession - they really are life-savers. They believe that care rather than control is the reason they are here. I feel no animosity towards the study folks at NIH for my situation - they were doing the best that they could at the time. I trust that my experience saved many others from experiencing my toxicity reaction - and that was the main. reason I was there.