HIV+ Participants

POSITIVE PROFILES: Portraits of People Living with HIV on AIDS/LifeCycle 6

...brought to you by Positive Pedalers.

The experience of AIDS/LifeCycle for HIV+ Roadies and Riders is not much different than the experience of any other Roadie or Rider. We all (well, most of us) sleep in tents, wake up, shower, eat, stretch and hop on our bikes to ride ridiculous distances up steep hills, lug gear from camp to camp, host fanciful rest stops for cyclists, or perform a myriad of tasks that make the Ride run smoothly.

Those of us living with HIV/AIDS, however, cannot kid ourselves that the Ride is exactly the same for us as it is for others. Many of us take a lot of pills, deal with fatigue and diarrhea, and have special nutritional needs. The lower part of this page will inform you of medical needs, nutritional issues, and important precautions related to the Ride. But first, here are some profiles of HIV+ Roadies, Riders, and ALC Staff; you will read stories of why we ride or roadie, and also learn how AIDS/LifeCycle has affected our lives.

Positive Roadies

David Duncan

Portland, Oregon
Roadie #9039 (in Bike Parking)

I remember seeing an ad for California AIDS Ride (CAR) 3 in 1996. The idea of riding a bicycle almost 600 miles for a week seemed like a ludicrous idea, and HIV/AIDS at that point was background noise for me. But it wasn't long after that I found out I was HIV+. As I grappled with the enormous changes in my life I volunteered to help register people for the Ride at Orientation. Wow-- seeing all the hundreds of people with big grins on their faces, about to undertake a grueling ride up and down hilly California for seven days, all to raise millions of dollars for AIDS services in San Francisco and Los Angeles made a profound impact on me. I was at the point where HIV had become my future--a future with a great deal of doubt and uncertainty. While I was out of shape and the newfound diagnosis leaving me with little self-confidence, I still decided I had to ride in CAR 4.

Fast forward to June 1997: There I was with my best friend Simon at Orientation Day for CAR 4. He noticed a table on the side of the hall that said "Positive Pedalers." He said, "You should go over there, talk to them, see what that's all about." That was the last thing I wanted to do: announce to the entire world I was HIV+. Why not wear a giant "A" on the top of my head? But I finally did the Impossible and approached the table and talked to this nice guy, Wilfredo. We chatted; he gave me an orange banner for my bike. Next morning, a bare two minutes before we ride out Simon is screaming at me to decide to put that flag on the bike or not, we're about to LEAVE, and I do it. Still thinking I was a pariah, I'm riding up this tough hill on Day 1 with this guy right behind and talking to me. Then he says, "Guy, here you are with that PosPed flag, pedaling away ahead of me, and here I've been feeling sorry for myself. You have given me such inspiration for going on, getting up this hill and finishing this ride. Thank you so much for what you are doing." Wow. Now I was out about HIV; I was giving a negative person inspiration, it was OK, I am just as able to do this ride as anyone. Six days later, after conquering the Everest of AIDS Ride 4, I streamed into LA with Simon, on top of the world; able to do anything I set my mind to.

Ten years later, I have done nine rides and was Co-Chair of Positive Pedalers for the past four years. I have come to see the power, within myself, of being out about my status. I have seen many people come close to the PosPed table, just like me years before: tentative, uncertain, and afraid of "who is watching." I can tell them that being out about your status frees you from your own personal stigma of having this disease. I have witnessed the powerful transformation of a person weighted down with the stigma of this disease be freed and liberated by becoming a visible and vocal, positive example of how HIV can not and will not define who we are.

The past few years have presented a new challenge for me; I was diagnosed with an HIV-associated brain disorder that has made me unable to work and I'm now on long-term disability. The expense of living in San Francisco on a fixed income became too much and at the end of 2006 I moved to Portland, Oregon-- with lower costs, but same (if not better) quality of life. And I decided to Roadie for the first time, in Bike Parking. I'm looking forward to sending off and cheering in all my Rider friends each day!

I feel very blessed to witness each year the transformation of a group of 2,000-plus riders and 400-plus roadies into a singular force committed to the eradication of AIDS. It is a wondrous sight to see this group of individuals become one, with a level of care and dedication to one another that I have never witnessed before. I want and must continue to be an integral part of this experience. Until we find a Cure.

Positive Cyclists

Tom Keep

Los Angeles Cyclist #1432

For most of the 25 years that Tom Keep has been HIV-positive, he has been quiet about that part of his life. "I've always been kind of secretive about my status," Tom said, "but as time goes on, I realize that there shouldn't be a stigma to it." And being more open about his status may help lift that stigma that others perceive, Tom believes.

At a recent social gathering at his church in Santa Monica, Tom announced to a group of parishioners that he has been living with HIV for a long time, and that he is participating in AIDS/LifeCycle this June. And then prepared himself for the reaction by members of the congregation. "At the end of the evening," Tom said, "a guy came up to me and said 'I'm so glad that you shared that. I've been positive for two years. And I've been so scared. Now I can see that I don't need to be scared. You've given me hope." The man confided to Tom, "I've never shared this with anybody. No one knows that I'm positive. But now you do."

St. Monica Catholic Church is at the heart of Tom's AIDS/LifeCycle 6 participation. Tom is the captain of a team of four parishioners -- Lynn James, Mark Misch and Jonathon Ramirez are the other members -- who have made a joint commitment to raise $21,000 for ALC 6. They set that sum as their team's fund-raising goal because it represents the annual cost of medication for one person with HIV.

Tom doesn't simply take his good fortune for granted. He has compassion for those who struggle with HIV and that is one of the factors that motivates him to participate in AIDS/LifeCycle and raise funds for the L.A. Gay & Lesbian Center. "I need to do something to give to the community, or show that surviving with HIV is possible," he said. "A lot of people think that [AIDS] is the end of the road, like I did 25 years ago. I never expected to live to see 40, and I will be turning 50 this year. I'm very proud of that."

ALC 6 marks Tom's return to long-distance cycling and fund-raising. In 2000, Tom rode in CAR 7, and was a Training Ride Leader for CAR 8. Last year, Tom was part of the volunteer team that supported the display of the NAMES Project AIDS Memorial Quilt at the closing ceremonies for ALC 5. "I was so moved by that experience," Tom said. Watching hundreds of riders arrive in LA reminded Tom of his experience with CAR 7. "I decided that I needed to do the ride again. So I signed up." Tom expects that his experience in the upcoming ride will be much different than it was in CAR 7.

Tom rode out of the CAR 7 opening ceremonies with Positive Pedalers, and wore a Pos Peds jersey. This year, Tom has stepped up his involvement in Positive Pedalers. And as the only HIV+ member of Team St. Monica, he believes that he can help the other team members and his congregation members better understand what it's like to live with HIV.

"I can do something to help remove that stigma that some people have about HIV," Tom smiled. And to other people with HIV, Tom said, "I may represent hope -- that diagnosis does not equal death."

Matt Reynolds

San Francisco Cyclist #4290

Seven AIDS rides and six years have passed since the last time that Matthew Reynolds got on a bicycle to raise funds for the San Francisco AIDS Foundation to fight AIDS. In 2001, Matt participated in CAR 8 as a rider and fund-raiser. Then 23 years old, Matt learned that he was HIV+ while he was being treated for substance use, and in recovery.

Dealing with the consequences of addiction on their own is a lot for someone to handle. Confronting an HIV diagnosis at the same time left Matt feeling "sucker-punched," he said. In the course of a few years, Matt went from being "a little Valley boy with a pretty decent but sheltered life" to becoming a substance abuser infected with both HIV and chronic hepatitis B. Signing up for CAR 8, Matt related, was "a way for me to feel OK about something that I was ashamed about." Doing the ride, Matt thought, would "turn a tragedy into something positive."

As a resident of San Francisco, Matt knew there were abundant resources for people with HIV. "But I felt strangely isolated. I felt like I was having to deal this with by myself. My friends would say to me, 'I'm really sorry, I feel for you,' but it felt like there was a level of disconnect." Matt thought that CAR 8 might provide a path out of that isolation. But the ride almost did not happen at all, when Matt fell $200 short of the fund-raising minimum to participate. "To actually have to pay to go on the ride was really disheartening," Matt said. "I guess I felt that I had not gotten the kind of response that I was expecting."

At Orientation Day, Matt encountered a table for Positive Pedalers. "I was hesitant to sign up, to be a part of it," Matt recalls. "The level of shame that I felt at that time was that significant." Matt did sign up eventually. "They gave me the little flag to put on the back of my bike. I was even more hesitant about that. I definitely had a difficult time with riding as a Positive Pedaler." In the dining tent on one evening of the ride, among a group of hundreds of riders and roadies, Matt recalls HIV+ riders being invited to come forward for a group photograph. Despite the misgivings he felt at being seen and identified as a person living with HIV, Matt opted to join the other HIV-positive riders and roadies in the photograph. "As we started to line up, everyone in the tent stood up -- people who weren't infected, who weren't getting their picture taken, all of the HIV-negative people doing the ride -- out of support for those who had come forward. They gave us a standing ovation! At 23, and newly diagnosed, it brought me to tears. It was a really powerful experience. I never felt so much comfort." At that moment, Matt felt the heavy sense of isolation that he felt surrounding his HIV diagnosis suddenly disappearing "I felt like everything was going to be OK," he says. "I was not doing this alone."

Since his CAR 8 experience, Matt has been able to come to grips with living with HIV and has years of sobriety under his belt. While his own situation is under control, he is disturbed by the ongoing impact of HIV, particularly how substance use continues to feed the spread of infection. Last year, Matt decided that it was time to return to riding his bicycle to raise funds for AIDS. This time around, Matt is approaching the ride with courage and confidence. Not only does Matt know that he is no longer alone, he has reached out to others and helped to form a small AIDS/LifeCycle family within his sobriety network.

The first time Matt embarked on an AIDS ride, he was seeking strength from the community to lift himself up. This time, he explained, the tables are turned. "The first ride was about me, my fears of dying, about doing something that I should be ashamed of," he said. "This year is different. Even in asking people for money, it's 'get out of yourself, Matt; it's not about you.' It's about a cause. It's about self-respect. And Matt has signed up as a member of Positive Pedalers, describing himself as "a proud and happy HIV-positive man." "I don't know what that will translate into by the end of the ride," he said. "But I'm certain it will be a completely different experience than it was the first time."

Medical Needs, Nutritional Issues, and Important Precautions

Nutrition

• Drink a balance of water and electrolyte replacement fluids.
• Be sure to ask camp and rest stop volunteers if ice is filtered.
• Drink water all day and all evening long! Dehydration can continue while you sleep, so keep a full water bottle with you at night to drink.
• Adequate fluids are especially important with Septra/Bactrim, or any other antibiotic.
• If you take Crixivan, keep a close watch on your fluid intake to avoid problems with your kidneys (sludge or stones). You need to add an additional 1.5 liters above your replacement fluid requirement (which is already increased from exercise/exposure).

Health Problems Encountered on the Event

• The most common problems or complications experienced on the event by HIV+ participants are diarrhea, nausea, indigestion and headaches.
• Diarrhea: expect to get it! Many things can contribute to diarrhea during the ride: heat, stress, change in foods, etc. As all these things can add to existing GI side effects. Be prepared! Take Imodium or Lamotil with you!
• Nausea and indigestion: Before the ride, think about what upsets your stomach. Vitamins? Certain vegetables? Spices? Some of your meds? Avoid foods that do this.
• Taking meds with food can help reduce nausea and indigestion, See "HIV Medications" section below. Ibuprofen should ALWAYS be taken with food.
• Tips: cool foods help calm your stomach. Hard candies sometimes help. Get out of the sun -- rest as much as you can. A cool rag on head and/or wrist can help to alleviate heat.
• Headache: dehydration can cause headache, take some ibuprofen or acetaminophen with you. Also, stopping caffeine abruptly can cause headache, so if you drink coffee regularly, drink it on the ride.
• Besides the meds, the sun, the new food, and the stress can contribute to existing side effects.
• Bottom line: if you're not feeling right, tell somebody and get help. Talk to other Positive Pedalers, your tent mate or riding partner. Nothing is more important than staying well.
• Medications, sun wind, new food, poor sleep, physical, mental or emotional exhaustion, and stepping away from your normal support system are some factors that contribute to stress and can cause health complications or complicate existing ones.
• Cold sores (HSVI; herpes simplex I): The sun, stress and exhaustion can trigger cold sore outbreaks and at times very extensive and painful episodes. If you are currently receiving prophylactic medical treatment for cold sores, talk to your physician about what to do in the event of and out break. S/he may reccomend you change your medication dosage. If you have periodic outbreaks and are not currently on medication, talk with your docitreabout whether you should be taking medication (Valtrex, valacyclovir or acyclovir) prophylactically for the event. By the way, this is a problem commonly experienced by our participants who do not have HIV. This is also a problem easily shared with others, so be careful of whom you kiss if you have and outbreak.
• If you experience new or existing health problems that worsen, see the Medical Team before the problem becomes a significant one. In many cases, the Medical Team can make recommendations before the health problem sidelines you.

HIV Medications - Recommendations and Tips

• You're out of your normal setting -- how will you remember to take your meds? Make a plan before you leave. Discuss treatment options and tips for adherence with your medical provider and/or other Positive Pedalers.
• Keep a list of all your medications and doses with you.
• Talk with your physician about the ride. Do a check-in about any special needs before you leave.
• Make sure you have your medical providers' telephone numbers along with your halth insurance information.
• It is best not to start a new medication regimen within one month before the ride, if it can be avoided.
• Keep medications out of direct sunlight as much as possible.
• Medication sets may be easier to deal with on this event than individual pill bottles. These are readily available at pharmacies or often from medical providers.
• Antiretrovirals that need to be refrigerated will be safely stored with the Medical Team and will be available to you a the AM and PM base camps as well as at the Lunch Stop.
• If you have special needs or feeling "off", always check in with the Medical Team in Camp or at any rest stop.
• Many of the physicians on the Medical Team re sophisticated with HIV related questions and medications. Don't hesitate to engage the medical staff with your questions or concerns.
• Specific Medication Tips
  
  • DDI/Videx should be taken on an empty stomach.
  • Crixivan should not be taken with a fatty meal, unless taken with Norvir
  • Saquanivir (Fortovase): Grapefruit juice increases saquinavir blood levels. Grapefruit juice should not be consumed during the event. Just a NOTE: Fortovase may be off the market by the time ALC5 occurs.
  • Reyataz, Aptivus, and Kaletra (all 3 in the capsule form) need to be with food.
  • Kaletra tablets (newly approved) and Lexivia can be with or without food.
  • Sustiva should be taken on an empty stomach and generally just before bedtime.

Sun

• Sun causes dehydration-drink water & electrolyte replacement fluids!
• Septra/Bactrim and some antibiotics, such as doxycycline and tetracycline, cause sun sensitivities -- wear high SPF sunscreen on all exposed body parts and reapply regularly -- you're sweating the sunscreen off too.
• Use plenty of sunscreen with SPF even if you're not taking antibiotics.
• Sunscreen an exposed head -- bring along caps and bandanas if there's not much hair up there.

Hygiene

• If you have the opportunity to wash your hands, use warm water and wash for 15 seconds.
• Wash hands or use Purell/antibiotic lotion/sanitizer after using the porta potties and bathroom whenever possible -- carry your own supply in case it is not available at your stop. Sanitizers should be available at camp and rest stops.
• Wash hands in camp before all meals.

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