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POSITIVE PROFILES: Portraits of People Living with HIV on AIDS/LifeCycle 7

...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.

Shirley Jaglowski

ALC 7 Cyclist #5575

As a single woman living in Orange County, Shirley Jaglowski never imagined that she would find herself infected with HIV.

She agreed to get tested for exposure to HIV only because a friend was training to become a drug counselor, and decided that she would get tested. Shirley offered to join her friend so she wouldn't have to go alone.

Two weeks passed and it was time for Shirley and her friend to return to get the results of their tests. "They told me that they needed to re-test me." Shirley said. "I had never had an STD or anything like that, so I said 'why not?' "

Shirley then learned that both tests had shown that she was HIV-positive.

"It was like time had stopped," Shirley said. "I just couldn't really even hear. The doctor was talking to me; the nurse was talking to me. I could see their lips moving, but nothing they were saying was sinking in."

The news that she was HIV-positive froze Shirley's life. For two weeks, she said, she barely could get out of bed, let alone make it to work.

"I couldn't stop crying," she said. "And I was trying to search my memory banks to find out what I had done in my life that put me in this predicament."

Eventually, she found the strength to resume going to her job. But she kept her HIV status concealed to everyone.

"I was afraid that if I told other people, they wouldn't like me anymore, that I would be shunned by my family, that they would be afraid of me," Shirley said.

An encounter at an AA meeting signaled a shift in Shirley's ability to deal with living with HIV.

At the meeting, she met a woman who later brought her to AIDS Services Foundation in Irvine. There, Shirley was assigned to a case manager who set her up with an appointment with a doctor, and she enrolled in ADAP so she could access medications. She also began to participate in workshops at ASF, where she met other people living with HIV.

"Gradually, I realized that HIV wasn't quite a death sentence, like I thought," Shirley said.

Soon, Shirley was taking larger strides in disclosing her situation to others. She began to participate in speaking engagements for ASF at high schools and colleges, sharing her experiences as a woman with HIV/AIDS and helping others to understand the disease. In the course of her volunteer work for ASF, she met her husband, who also is HIV-positive.

At an event where AIDS/LifeCycle was performing outreach, Shirley met Pam Garcia from the ALC staff.

"I thought, if this is something I want to do, I may as well do it now," she said. "I said I'm 48 years old and I'm not getting any younger."

While watching the DVD in the ALC welcome packet, Shirley saw riders with orange flags on their bikes. Before long, she found herself joining Positive Pedalers, signing up for PosPedsConnect, and submitting an RSVP to a Pos Ped training ride.

In January 2008, Shirley stood behind a microphone, in front of hundreds of guests at the at the AIDS/LifeCycle kickoff party at the Sheraton Gateway Hotel, and talked candidly about what brought her to the ride.

"Over the years I have sadly learned that I am not alone with this disease," she said. "There are countless others. And although I would not be who I am today with out their support, it is bittersweet that I am not alone."

After Shirley finished speaking at the ALC kickoff party, a young woman walked up to her and gave her a big hug, "She said, 'I'm positive, too, and I don't tell anyone." My heart went out to her."

In the beginning of Shirley Jaglowski's journey as a woman living with HIV, she was afraid of how HIV would alter her life.

Today -- 10 years later -- Shirley is excited about where that journey may take her next.

Visit Shirley's AIDS/LifeCycle homepage.

Jose Ibarra

ALC 7 Cyclist #6003

Yesterday was an emotional day for me in many ways... When I first started to ride with Pos Peds, part of my goal was to become more comfortable being in my own skin as a Poz guy. I felt that you guys are doing so much for others, but also helping people like me, understand that its okay to be Poz and that we all love and support each other.

I've been blessed to become good friends with JR, Frederick, Brendan, Eric B... the list goes on and on. When they hung out with me, to help me practice with my cycling, other things were going on in my mind. I started to feel more comfortable with my status.

I had bought my first Poz shirt a few weeks; I have been anxious in wearing it and yesterday was the perfect day to wear it. When I put it on, the feeling inside me, I just can't explain but I knew I was getting one step closer for allowing myself to be me! (I almost didn't make the ride. I'm not an early person...heheh)... You guys have given me the strength to show people, that I am not ashamed of who I am-- being Poz has given me a different outlook, a reason to live my life.

Paul gave me my Poz flag -- that put the icing on the cake. The smiles and greetings I got from people on the ride were very touching. Eric B. stood by me the whole time. Now I know, what you guys have told me: we are the face of this ride, and we have to be visible to others. I know riding out on the streets, people looked and stared, but that was okay with me.

The rest stop was great seeing the Poz table -- seeing Frederick and JR. I had to mention to them, it was my first time wearing the shirt; I felt proud!

After it was said and done -- I had an amazing experience -- but it really hit me at night. See, Friday I celebrated 3 years of sobriety; April 26 will be my 3rd anniversary of when I was diagnosed. The ride has given me strength to stay sober; but my program has made me believe in myself. I would have never thought I would run a marathon and now ride for 7 days. I went to my meetings and expressed my gratitude to my friends from the program -- they saw that sparkle in my eyes, they knew how happy I was --

Anyhow, I should have blogged yesterday to really capture the moments... but I want to thank you all for showing me, we are positive men, doing positive things to end the negative stigma.

My next step is to actually put my picture with my Pos Jersey on my blog (I work in public service/community things) without that fear of the stigma. Little steps. =)

Once again guys, thank you -- for making me part of the Pos Family! I look forward for the ride, to meet you all!

PS: oh yea -- I kicked ass going up the hills in Palos Verde (compared to my first time)!!! I conquered it (with flat pedals)...lol

Visit Jose's AIDS/LifeCycle homepage.

Stephen Puibello

ALC 7 Cyclist #1814

Reprinted from HIV Plus, May/June 2008. Copyright 2008 by LPI Media Inc. All rights reserved.

By Bob Adams

Learning you're HIV-positive is upsetting enough without having another bombshell accompany the news. But that's what happened to Cliffside Park, N.J., native Stephen Puibello when he was also diagnosed with bipolar disorder, also known as manic-depressive illness. But he didn't let the dual diagnoses drag him down. Instead, he focused on improving his overall health and has dropped 80 pounds in the past eight years. The 49-year-old is in such good shape that he's completed several cycling fund-raisers, including last year's 545-mile AIDS/LifeCycle.

He'll again travel cross-country to California -- paid out of his own pocket, despite living on a limited income -- for his second LifeCycle in June. And, he says, he views the annual event as a unique chance to help shatter the stigma still associated with mental illness.

Which do you find more difficult to be open about, being HIV-positive or having bipolar disorder?

Puibello: Being bipolar has a bigger stigma than HIV. Don't get me wrong: HIV does have a stigma associated with it. But it sometimes amazes me that there's so much shame associated with mental illness, especially when you consider that there are about 5.7 million Americans affected by bipolar disorder.

Have you faced any negative reactions about your mental illness?

Puibello: I've never been outwardly discriminated against, but some people just don't get it. But I'm lucky enough to have friends all over the world and a strong support network of people who understand my struggle.

When you participate in rides, you wear your BiPolar Bear jersey identifying you as having bipolar disorder. Why do you draw attention it?

Puibello: To fight the stigma associated with mental illness by being open about my personal experiences and to let other bipolar people know they aren't alone. When people see me with my jersey on, they stop me and tell me that someone they know is also dealing with the disorder or that they are bipolar themselves. I've had some very emotional and heartbreaking talks with people who feel such shame about being bipolar.

Successfully managing one chronic disease is difficult enough, let alone two. How are you doing today?

Puibello: My viral load is undetectable, my T-cell count is almost 1,000, and I've never had more energy. I'm living proof that having HIV, a mental illness, or both doesn't have to put you on life's sidelines.

Visit Stephen's AIDS/LifeCycle homepage.

Michael VonTanner

ALC 7 Roadie #8277

Last year was my first experience of 'the ride' and while I poured Gatorade out of jugs into the bottles of countless people I began to understand that all this was for me!

Up here in Portland, Oregon my husband and I were watching the Logo special of the AIDS/LifeCycle on TV and afterwards he jumped up and declared "I'm gonna do that next year!" I said, "Right honey, you go!"

You see my hubby in the 18 years we've been married has not exercised a day in his life. He spends most of his time keeping me healthy and making sure I am just fine. (It was one year to the day after our wedding that I was diagnosed with full blown AIDS and the infamous cancer that often goes along with it. Happy Anniversary, Honey!)

Chris is an incredible artist and a man of dreams, but riding a bike from S.F. to L.A... Well to my surprise, even after his first training ride with Team Portland and breaking his collar bone I never heard him talk about not doing the ride. He was doing it to support me and so I signed on as a roadie to support him.

When we arrived in San Francisco, out of the blue, I remembered my cancer doctor telling me he had just talked to a Dr. in S.F. and if I was willing (to be a guinea pig) he wanted to try a new kind of Chemotherapy that this Doc had been having great success with and sure enough we kicked the cancer in the ass. All these years and all these meds have been rough on my brain and sometimes it takes me a little longer to put the pieces together or to see the forest for the trees, yet my husband still sticks with me. Sometimes it takes months or even years for my mind to take all these little bits of information and put them together and when it finally does, I am overwhelmed and amazed. So honestly, it wasn't until registration last year that a lot of things started falling into place like 'PosPeds' this and 'roadie' that. I found myself often overcome with emotion, tears welling up in my eyes, when I realized I am actually part of this and I was able to tell, up close and personally, perfect strangers, people I had never meet, 'Thank you for caring, caring about me!' "Wow! What a mind blow."

Well this year Chris is doing Rest Stop 1 with me, OK, sometimes his mind takes awhile to process things and he missed the cut-off date to be a rider. Turning a disappointment into a new found opportunity, one of his best tricks he's tried teaching me over the years, he's having a ball working on some props and costume pieces for the RS 1 themes. Come by re-hydrate and have a few laughs. Knowing you're doing the right thing gets validated sometimes in the most unexpected ways. This year a picture of me was added to the ALC Participant Guide (page 60, Cowboy with megaphone), so thanks guys for that unexpected stroke. This will be my 2nd year at Rest Stop 1 and with my husband by my side, I'll try not to cry so much. I tell everyone I'm crying because we have to leave so early, we don't get to be part of the opening ceremonies. The truth is "I am a Survivor" and it's because of all of "You"!

Visit Michael's AIDS/LifeCycle homepage.

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. Avoid more than 4 grams acetaminophen in a 24 hour period. Also, stopping caffeine abruptly can cause headache, so if you drink coffee regularly, drink it on the ride.
• 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 recommend you change your medication dosage. If you have periodic outbreaks and are not currently on medication, talk with your doctor about 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 an 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 health 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 at 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 providers on the Medical Team can assist with HIV related questions and medications. Don't hesitate to engage the medical staff with your questions or concerns.
• Specific Medication Tips
  
  • DDI/Videx and Lexivia should be taken on an empty stomach.
  • Crixivan should not be taken with a fatty meal, unless taken with Norvir
  • Saquinavir (Fortovase): Grapefruit juice increases saquinavir blood levels. Grapefruit juice should not be consumed during the event.
  • Reyataz, Aptivus, and Kaletra (all 3 in the capsule form) need to be with food.
  • Kaletra tablets should be taken with food.
  • Sustiva should be taken on an empty stomach and generally just before bedtime.

Sun

• Sun causes dehydration-drink water & electrolyte replacement fluids!
• Antibiotics such as Septra/Bactrim, 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 soap and wash for 15 seconds.
• Wash hands or use Purell/alcohol rub 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.