Subject: Caregivers Digest V2 #160 Subject: Re: Kaohsiung Subject: Taipei Subject: Update on life.... Subject: One Step Forward & Two Steps Backward Subject: Re: crypto Subject: Re: Update on life.... Subject: Re: Larry and Mothers Subject: Re: family of choice Subject: Fw: }+{ As seen in The State... [15190] Subject: }+{ As seen in The State... [15190] Date: Wed, 20 May 1998 06:45:03 -0700 (PDT) (395 lines of text) Date: Tue, 19 May 1998 08:55:45 -0500 Date: Tue, 19 May 1998 14:01:29 -0400 Date: Tue, 19 May 1998 16:05:14 -0500 Date: Tue, 19 May 1998 18:22:51 -0400 Date: Tue, 19 May 1998 20:14:10 EDT Date: Tue, 19 May 1998 20:15:00 -0400 Date: Tue, 19 May 1998 20:26:02 EDT Date: Tue, 19 May 1998 20:33:09 EDT Date: Tue, 19 May 1998 20:32:22 -0400 Date: Tuesday, May 19, 1998 9:36 AM From: owner-caregivers-digest From: Papa4Beck From: Jill From: Papa4Beck From: Steve From: JFlor44073 From: "charles From: JFlor44073 From: JFlor44073 From: "charles Caregivers Digest Wednesday, May 20 1998 Volume 02 : Number 160 In this issue: Re: Kaohsiung Taipei Update on life.... One Step Forward & Two Steps Backward Re: crypto Re: Update on life.... Re: Larry and Mothers Re: family of choice Fw: }+{ As seen in The State... [15190] To unsubscribe, follow the instructions in your welcome message, or visit http://www.queernet.org and click the "Unsubscribe from 'caregivers-digest'" button. Write to the list manager at owner-caregivers-digest at sibyllineofbooks.com. ---------------------------------------------------------------------- Date: Tue, 19 May 1998 08:55:45 -0500 From: Papa4Beck Subject: Re: Kaohsiung Dear Jill.... Thanks for the tour....I sure enjoyed it. Sounds exciting and a little grueling. One of Becky's nursed was in China last summer to finish her studies to get her degree as a Doctor of Oriental Medicine. She had similar eperiences and observation. The culture was so different from anything she had experience before. Looking forward to hearing more. Hugs, Larry http://members.tripod.com/~furmann/index.html ------------------------------ Date: Tue, 19 May 1998 14:01:29 -0400 From: Jill Subject: Taipei Dear Friends, Taipei! Well .... it is a capital city, so it has a very different feel to Kaohsiung. It is big and impersonal - and so very HOT! In Kaohsiung we were met at the airport by the Head of English from the University. At Taipei we had to find our own way from the airport and were left to fend for ourselves for the first 24 hours. But the hotel was modern, the staff understood English and the airconditioning was so good I needed a blanket at night - so I slept well for the first time in over a week. Again, I walked and walked - found a shop for tourists where I could buy the presents I needed to bring home - found the Chiang Kai-shek Memorial Hall with its vast parade ground and gardens where familes had come to play, buy food from the stalls, sit on the shady verandah of the vast National Theatre and watch some youngsters parading with flags in the blazing sunlight. The gardens are bordered by a cooler, cloistered walk and I was intrigued by a large, permanent sign showing a Reflexology Foot Chart - all in Chinese of course. Then I saw people taking their shoes off and walking along a cobbled path beside the cloister - a Do It Yourself Reflexology path! The curved stone cobbles were designed to hit all the right spots in your foot! I wasn't brave enough to try. It looked quite painful and children were being encouraged to practice it with their shoes on. Then, after a siesta and another shower, I found my way to the famous Flower Market, just as it was closing. Not many flowers left - but those I could see were so beautiful. If only I could have brought some of the orchids home with me! But I did fall in love with a large flower-pot in dark blue and covered with two great dragons! I had to buy it! And the bonsai pots were so cheap (they are almost unobtainable over here) that I had to buy several of them too. My arms were much longer by the time I managed to find my way back to the hotel - I got lost somehow and walked for ages. And then, of course, my beautiful dragon pot wouldn't fit into my bag - so I had to go out again to buy a new 'in-flight' bag for the journey home. Our one performance in Taipei, at the University of Chinese Culture, was depressing after the wonderful reception we had in Kaohsiung. The students were ill-prepared and inattentive. There was no welcome - not even a cup of tea. We wondered why we had been invited. But the next day we were guests of honour at a reception given by the British Council to mark the opening of their new offices - beautiful food, flowers and champagne - and lots of important people! A very grand occasion. As we set off to walk back to the hotel (to collect our bags and set off for the airport) Taipei decided to give us a spectacular send-off - a real Tropical Storm with continuous thunder and lightening. We were trapped in a shop doorway for more than an hour. I have never seen such rain! There is so much more to say - so many strange and wonderful experiences - perhaps I should write another book. I did keep a diary, so we will see what happens. It feels as though a new chapter of my life has started to open. RT is still with me and the strength I gained while caring for him has given me the courage to explore new worlds and share the skills and experience that I now know I possess. I am not the same person I was before I met him! Love Jill ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ JLamede http://ourworld.compuserve.com/homepages/jlamede ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ------------------------------ Date: Tue, 19 May 1998 16:05:14 -0500 From: Papa4Beck Subject: Update on life.... Hi all.... Well, Ric completed his first round of Chemo last Friday and is on his 2nd week of 6 weeks of radiation. He is experiencing some fatigue and a whole lot of pain in the anal area. Has the severest diarreha I have seen since Becky was in the throws of crypto. He has about 15 -20 espisodes a day and he says that he thinks that I have exchanged the toilet paper with sandpaper. We spent most of yesterday afternoon at the oncology clinics. He was advised to remove caffien, chocolate, fresh fruits, fresh vegetables and any type of whole grain from his diet. It is called a low residual diet. It will take some doing to change our eating habits, but this should assist in lessening the radiation side affects of diarreha. We spent the better part of today at the clinics as well. First, his radiation treatment; then a consult with the oncologis, who recommended oatmeal baths and increased his morphine for the constapating affect of it, as well as pain reduction. Then the real kicker, at least to me. We saw his ID doc, with the full anticipation of Ric being placed on his new HIV meds. Not so. Due to the Chemo, he cannot start the new meds. The earliest possible is in about 6-8 weeks. The doc will have to reapply for the compassionate use after he finishes chemo and radiation. There is a strong possibility that it will be denied due to his cancer diagnosis. The doc wasn't to hopefilled. There aren't any other options left, until these drugs get FDA approval, when the doc could then prescribe them. It seems like one dream/hope is dashed after another these days. It has been 5 years since he was diagnosed....never knowing he had HIV and then diagnosed immediatly with AIDS. In those five years, our hopes for Becky were smashed with the Crypto infection, which ultimately killed her. Then, just before her death in 95, his health started going to hell in a hand basket. We survived his bout with hallucinations; worked thru the pneumonias, surgeries, blood clots, failing physical health; loss of memory at times and some confusion from all his meds. We lost all family and friends. Then had hopes of a relocation ultimately taken away, then cancer and now the HIV meds are on hold. How much more?????? Well, I need to get some rest. Have only had sporadic sleep these past two days, as so much time was needed at the clinics. Tomorrow should be a free day for me.....he has radiation and some lab draws to be done, but unless he feels he needs me to be with him (he is somewhat weak), I will stay home and SLEEP! Hugs, Larry http://members.tripod.com/~furmann/index.html ------------------------------ Date: Tue, 19 May 1998 18:22:51 -0400 From: Steve Subject: One Step Forward & Two Steps Backward Dear "my adopted family," It seems like Larry and I seem to have the same horoscope daily as time goes by, enduring difficulties with our loved ones almost always at the same time. I know I'm worn out, and know damn well Larry is, too, but there's not much else to do but grin and bear it, knowing things can't get much worse... only better. Ann Thibodeaux and Kathleen called me late this afternoon, and they could hear how frustrated I am since there's nothing more I can do for Steve right now with his being so weak, slurring his words, not eating, throwing up all last night and today, terrible edema in both legs and feet so bad the skin is discolored and blood vessels breaking and bleeding, and still in bed since early last evening. Put a call in to the doctor this morning, but sleeping on the couch this afternoon I missed his call, but it's time for me to throw another bitch fit and have him admitted into the hospital to get on IV, some more transfusions, and find out what the hell is going on before he wastes away to nothing. This is no life for me nor for Steve, and with the proper care perhaps I can at least get out and find a new place to live and get all that handled before it's too late. He does have a meeting tomorrow with the housing authority which he needs to attend at 11: AM... how I'll get him there is beyond me, and once he's there he'll not even remember the meeting... and after that perhaps we will go right to the hospital as much as he hates the place. I'm feeling so guilty that whatever I'm doing isn't working, but he needs more than I can give right now but, even more, we both need answers! I finished my mentor training last night at ActionAIDS, and got so much love and support from the group at the close of the session, telling me how much an inspiration I was to the group, and how much I truly have to offer others. I just am doing the best I can to survive, and told those just trying to help out that "one just cannot talk the talk unless he walks the walk, " also giving advice to those who are scheduled to be buddies to empower others to take ownership of their disease, or they will surely become nothing but a victim and a statistic. Perhaps this may just help Sussanah in helping Owen... who knows? since every one of us is so very different from another, as much as AIDS effects every single one of its "targets" uniquely and unlike as to any other. So as much as I do have hope and faith, life has sucked for so damn long, I feel it will never get better though in my heart I know differently. For better or worse, it has to change, and hope it changes for the better real soon. Love to all, thanks for your calls, cards and letters of support, and will keep you all posted, Mark ------------------------------ Date: Tue, 19 May 1998 20:14:10 EDT From: JFlor44073 Subject: Re: crypto Hi Dawn, I just og t back from an AIDS conference in Harrisburg, so am trying to catch up with all of the mail. I bought one of those filters from Hechingers Home Supply and it hooks right on to the kitchen faucet. It was about the same price that you paid though. Jim ------------------------------ Date: Tue, 19 May 1998 20:15:00 -0400 From: "charles Subject: Re: Update on life.... Ric & Larry {{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}} I never cease to be disgusted at the crap so many of us have to contend with. However, I am more amazed at the strength, endurance, and compassion we still seem to have after the rat race is briefly put behind us. All I can say is hang in there. Each of us has put up with similar crap -- but I very seldom see where it gets us down for long. Rev'd Charles H. Lee http://home.att.net/~mrchashlee ------------------------------ Date: Tue, 19 May 1998 20:26:02 EDT From: JFlor44073 Subject: Re: Larry and Mothers Hi guys, I just got back from an AIDS conference in Harrisburg and am just getting to read all of the mail that has accumulated. I got one of those filters for my water about a year ago, even though the city of Reading claims that the filtration system that they have is good enough to filter crypto already. I just wasn't taking any chances. The news about Steve's cancer was great. I haven't read any further than this, so I hope everything is still ok. My comment to this letter is AMEN! There is no excuse for insensitivity directed towards another person no matter who that person is. Gotta run and read some more. Jim ------------------------------ Date: Tue, 19 May 1998 20:33:09 EDT From: JFlor44073 Subject: Re: family of choice Mark, This was a little mushy, but I know how you feel. While I was at the conference I wondered how everyone was doing and couldn't find out. I am really glad you are all out there. Also it was wonderful to be able to see Larry on TV a couple of weeks ago. Although the message wasn't wonderful, I found it really exciting to think that I had just turned on the TV after I came up from the office from writing to him! It was great to be able to put a face to someone who is so kind and thoughtfull. Love you all Jim ------------------------------ Date: Tue, 19 May 1998 20:32:22 -0400 From: "charles Subject: Fw: }+{ As seen in The State... [15190] Rev'd Charles H. Lee http://home.att.net/~mrchashlee Date: Tuesday, May 19, 1998 9:36 AM Subject: }+{ As seen in The State... [15190] >FYI: The State is the daily newspaper serving Columbia, South Carolina. >This column appeared on Wednesday, May 13. > >HOMOSEXUALITY SAFETY TIPS MAY PROTECT DELICATE SENSIBILITIES > >To Bible-thumpers who fear exposure to gay people results in sudden >conversion to homosexuality, I offer the following safety tips: > >1. Avoid the mall or any specialty shops (especially antiques stores, > flea markets and auctions). > >2. Avoid the ballet, concerts, museums, festivals, pageants and the > theater. > >3. Avoid schools, restaurants, bars, gyms and health clubs. > >4. Avoid going to the movies or renting a video. > >5. Avoid hairdressers, fashion shows and interior designers. > >6. Avoid health-care professionals or anyone in a uniform. > >7. Avoid professional ice shows, race tracks, basketball, football, > baseball, etc. > >8. Avoid listening to pop, jazz, classical or any other type of music. > >9. Avoid books, magazines, computers and television. > >10. Avoid your neighbors, the workplace and your friends. > >And one more thing: Do be careful at church. > > >Lisa Smarr > >The State >Wednesday, May 13, 1998 >Section: Editorial >Page: A10 > > > ------------------------------ End of Caregivers Digest V2 #160 ********************************