What a shock...

I am an African-American woman known as MAD to almost everyone. I just moved back to Seattle in July of 1990. I was working two jobs and trying to get the money together so I could send for my six children, which I finally did in October of 1990. By working two jobs I was able to take care of my children by myself. It was very hard for me, especially when my husband was not trying to work at all. I told him that it was not going to work with him not bringing in any money.

I began to get tired all the time and was having a hard time working both jobs. It was about then when I began to notice two knots on my neck. I went to see my provider in February of 1991, which is when I found out just before my 33rd birthday that I was HIV+. I was very shocked to know that I had been infected. So when I went home to inform my ex-husband that I had taken the test for HIV/ AIDS, and that it came back positive, he replied “I’m going to die of something, why not AIDS.” I wondered if this was the way he intended to get back at me for divorcing him.

In 1994 my ex-husband died of AIDS. This is when I found out that he was infected… on his deathbed. What a shock. So far I have been well, for which I give thanks to my Heavenly Father up above. I have remarried since and I am extremely happy. My husband is very supportive with me being involved in the BABES Network and getting information so that he can learn more about the disease. My children worry about me getting sick. So I tell them just to take care of themselves and make sure they are using protection when they have sex. I have especially told my girls, who are older than the boys.

My younger son has been worrying a lot about my health and how I am doing. So I have to reassure him that I’m OK. I just found out that my viral load is 429 and my CD4 count is 279, I have hope because of this and I will continue to pray for everyone that I know who is infected and those who are not sure.

GOD Bless you all! Thank you for reading this.

“THE RUMOR”

If I had to summarize how I generally feel about having a deadly disease after 4 months of knowing, it would probably go something like this…

Learning you have a disease is like a rumor. At first you give it way too much attention… You speculate all the other juicy, horrifying things that could be associated with it… You branch off here and there and let our mind wander into the land of the morbid, scandalous, and shameful...

But after a while the sensationalism dies down. You start to forget the rumor you once heard and gave far too much credibility to. You leave the land of the morbid, scandalous, and shameful, and return to the land of sensible normalcy where morality prevails - You simply move on and the rumor fades away…

But you remember the Golden Rule that your Mama taught you about rumors: the most important thing about a rumor, more important then trying to simply “ignore” a rumor (which most of us have a difficult time doing), or taking it with a “grain of salt,” so to speak, is that you never, ever, spread a rumor.

So if someone asked me if I had a deadly disease, I might be inclined to say, without so much as blinking my eyes: “Nope - that’s just a rumor that we shouldn’t spread.” That’s where it starts and that’s where it ends.

I refused to be defined by my illnesses and ailments. The other day someone close to me said that I shouldn’t be going out and meeting new people; said I was leading them on and wasting their time…

He said, “people will just have to know that this is who you are right now, and that this is part of you.” I said to him “that’s where you’re wrong, I’m not making any promises to anyone for the future. I’m not hurting anyone or deceiving anyone by choosing not to disclose my dirty secret. I may die of this disease but I refuse to give up my happiness now. And besides, as far as my new friends’ interests are concerned, well, no one ever died of longing.” (Bear in mind that I have no intention of “spreading” my rumor!).

As you can see, I disagree vehemently about this disease being “who I am right now.” This is NOT “who” I am. Nor is it even “part of me.” Now you can say I’m in denial. Say whatever you like. I am so much more than some nasty components that coexist in my blood. Pound for pound my ingredients are heart and soul, mind over matter. This disease is no more than my hair color, which can be changed by the ingredients in a little glass bottle in 30 minutes or less!

So I told this person who tends to judge and define me by my illness that if I submit to that way of thinking, then he may as well start shoveling the dirt over my head right now. I know I will die if I buy into the conclusion that this disease is “who I am” or “part of me.”

If I allow this disease to change my way of thinking, my entire “way of life,” the way I dress and speak and flirt, and my basic nature… then it truly will become me, and devour me. No longer will it stop at replicating my blood cells, but soon, my brain, my heart, my soul. All these things that truly make me “me” would become replications, diseased and mutated, and it will win. And this is why if you ask me if I have a disease I will definitely tell you it’s just a rumor! (Without even blinking my eyes).

Dear BABES,

Life is not easy these days. My 15-year-old daughter is sick again. She’s been down with cold bug for the past 10 days and whenever she gets sick, I begin to grieve. In my grief, I cry out to God for healing for my daughter. I humble myself before Him and ask “what can I do to make my child’s life easier during this hard time.” When the answer comes I am not surprised... God tells me to lay my cares upon Him and learn of His way because His yoke is easy and the burdens are light. When I remember to do this tears come to my eyes and peace floods my being. No, I’m not preaching, I’m just telling you what I do. Being the caregiver of a child who is ill much of the time seems so hopeless during the time that sickness overtakes her. I not only pray but I fast forward to her funeral. Flashes of pictures or scenes run through my head about what it will really be like when she does die. Yesterday I asked her “Are you afraid to die?” After thinking for a second she replied with a serious expression “no.” And then I told her why not. And she said, “I don't know, I’m just not.” Last night the scenes of events surrounding her death took their place in my mind. I pictured the house we live in without her in it. I saw myself longing to see my daughter’s smile, hear her voice, touch her hand and talk with her. Then I came out of my trance and realized I must be there for her as much as possible before she dies. Life is so precious, I said to myself. So I went upstairs into her newly cleaned room and picked out a book from her bookshelf. It was a book I bought for her last Christmas and I said to her “I'm going to read you a story. Sit back and relax because it’s a really good one.” Losing slowly whom I love most in my life makes me examine how I have taken time spent with my child for granted. Last night when I read the first chapter of that book to her I felt I was holding her dear to me and filling out time together with a pleasant experience. My prayers are being answered in one way or another and I’m just grateful that I have the time to share special times with my daughter. For I do love her so. Love, A BABE

MAKE TODAY COUNT

25 Practical tips to help those facing a serious illness:

Wellness Through Chair-Robics

When someone you know is facing an illness, especially a serious illness, we often feel helpless. We stammer the weak phrase: “Just call if you need something.” - Have you gotten a call lately? Here are some practical tips to really help someone facing an illness… from people who have been there.

1. Don’t avoid me. Be the friend… the loved one, you’ve always been.
2. Touch me. A simple squeeze of my hand can tell me you still care.
3. Call me to tell me you're bringing my favorite dish and what time you are coming. Bring food in disposable containers, so I won’t worry about returns.
4. Take care of my children for me. I need a little time to be alone with my loved one. My children may also need a vacation from my illness.
5. Weep with me when I weep. Laugh with me when I laugh. Don’t be afraid to share this with me.
6. Take me out for a pleasure trip, but know my limitations.
7. Call for my shopping list and make a “special” delivery to my home.
8. Call me before you visit, but don’t be afraid to visit. I need you. I am lonely.
9. Help me celebrate holidays (and life!) by decorating my hospital room or home or bringing me tiny gifts of flowers or other natural treasures.
10. Help my family. I am sick, but they may be suffering. Offer to come stay with me to give my loved ones a break. Invite them out. Take them places.
11. 11. Be creative! Bring me a book of thoughts, taped music, a poster for my wall, cookies to share with my family and friends… an old friend who hasn’t come to visit me.
12. 12. Let’s talk about it. Maybe I need to talk about my illness. Find out by asking me: “Do you feel like talking about it?”
13. 13. Don't always feel we have to talk. We can sit silently together.
14. Can you take me or my children somewhere? I may need transportation to a treatment… to the store… to the doctor.
15. Help me feel good about my looks. Tell me I look good, considering my illness.
16. Please include me in decision making. I’ve been robbed of so many things. Please don’t deny me a chance to make decisions in my family… in my life.
17. Talk to me of the future. Tomorrow, next week, next year. Hope is so important to me.
18. Bring me a positive attitude. It’s catching!
19. What’s in the news? Magazines, photos, newspapers, verbal reports, keep me from feeling the world is passing me by.
20. Could you help me with some cleaning?
21. Water my flowers.
22. Just send a card to say “I care.”
23. Pray for me and share your faith with me.
24. Tell me what you'd like to do for me and, when I agree, please do it!
25. Tell me about support groups (like BABES) so I can share with others.

Toys in Babeland
Invites you to join us in celebration of
National Masturbation Month!

In celebration of that all-American pastime, masturbation, Toys In Babeland is recognizing the month of May as the perfect time to honor the gratifying, yet under-appreciated activity of solo pleasure.

So how do we celebrate such a holiday?

• National Masturbation Day kicks off the month on May 7th. Toys In Babeland encourages everyone to spend some quality time with themselves this holiday. Call in late to work, or take an extended lunch break and “water your flower.”
• -Stand up (or lie down) and be counted during the First National MASTURBATE-A- THON! It will be a fundraiser like no other: get your friends to sponsor you for every minute you spend “polishing your pearl” on National Masturbation Day, May 7th. All proceeds go to regional HIV prevention organizations (Seattle’s proceeds will benefit the BABES Network). Customers who turn in completed sponsorship forms will receive 10% off their next Toys In Babeland purchase and a “I Came For A Cause” bumper sticker. Sponsorship forms are available at our stores in New York and Seattle, on our web site at www.babeland.com, or by calling 1-800-658-9119. Other women-owned and run sex toy shops are participating in the MASTURBATE-A-THON, including Good Vibrations in San Francisco and Grand Opening! in Boston.
• -“Masturbation is not a joke, but drawing attention to it is FUN,” said store owner Rachel Venning, “let’s throw some light on this much maligned activity, admit that we do it and we LIKE it
• – and why not raise some money while we’re at it!”
• -Women will also have the opportunity to improve their jillin’ off technique at an exclusive in-store workshop:

PETTING THE BUNNY: THE JOYS OF SOLO SEX Featuring the wit and wisdom of one of our favorite local sexperts – Tess Sweets Wednesday, May 26t,h,, 7 p.m. Sorry boys, women only. Limited space, pre-registration available. Admission is FREE! Why Masturbate?

• Because masturbation is immensely pleasurable, invigorating, rejuvenating and fun.
• Because sexual pleasure is each person’s birthright.
• Because masturbation is the ultimate safe sex.
• Because masturbation offers numerous health benefits including menstrual cramp relief, stress reduction, endorphin release, stronger pelvic muscles, and reduction of prostate gland infection for men and resistance to yeast infections for women.
• Because masturbation is an excellent cardiovascular workout.
• Because each person is their own best lover.
• Because masturbation with a partner can be educational and hot.
• Because masturbation increases sexual awareness.

For these and many other reasons we celebrate National Masturbation Day and affirm the inalienable right to the pursuit of happiness and sexual pleasure!

Dental Services for King County Residents who are HIV+

Good oral health and dental care are important for people who are infected with HIV. Simple dental problems may become serious when you have a weak immune system. Most problems that occur in the mouth can be treated. And, if problems are diagnosed at an early stage, treatment is more successful. In King County, there are several ways to take care of your dental needs. The Early Intervention Program (EIP) is a state-sponsored program that pays for dental care for low-income people who are HIV+. The Ryan White Dental Program is a federally funded program that provides comprehensive dental services through contracts with Harborview Medical Center and many of the community dental clinaics in Seattle. The program is designed to provide needed dental services to low-income people who have HIV or AIDS, but are not covered by EIP or Medicaid. The AIDS Care Access Project (ACAP) provides referrals for dental and medical care. The agency maintains an up-to-date lists of dentists experience and demonstrated sensitivity in providing dental care to people who are HIV+. ACAP is the enrollment site for all EIP-sponsored services for King County residents. ACAP makes dental referrals for EIP, Ryan White, private insurance, or Medicaid-sponsored patients. Call ACAP for enrollment or referral information: (206) 284-9277.

Mark your Calenders!!

The date for the NEW RESEARCH on WOMEN & SELF ADVOCACY TRAINING has changed. In the April newsletter there was a notice that it would be at the BABES office on Saturday, May 22 at noon. It will not!! It’s been moved to a new, larger location and it will be held on Saturday, June 12. It will be at the Miller Community Center, 330 19th Ave East. Call the BABES office if you need directions or a ride. It will be from 11AM until 3PM, with a break for lunch. - Brian Coppedge (Director of Seattle Treatment Education Project) will present information specific to HIV+ women’s health from the recent Retrovirus Conference. Jesse Chipps (Director of BABES, and long-term survivor) will facilitate an interactive workshop that will give you the opportunity to learn more about the tools you can use in communicating with doctors, case managers and other service providers. In addition, we will look at the underlying issues that keep many positive women from speaking up for themselves. Join us to get new ideas, share yours, and do some exercises and brainstorming.

Attention, Women!!

Women infected with half the level of the HIV virus as men may be just as likely to develop AIDS. A study conducted at the Johns Hopkins School of Public Health suggests that women are at risk when the level of HIV in their bloodstream reaches 5000 copies of the virus. This is half the level at which current U.S. Guidelines suggest treatment should begin for both men and women. Researchers found that the viral load values for women were about half as much as men with the same T Cell counts. This suggests that less virus may cause more damage to women. Although further analysis of the study is warranted and more studies need to be done, the implications of these findings are serious. Perhaps women need to start prophylaxis medications to prevent Pneumocystis Pneumonia. (The AIDS Pneumonia), for example, sooner or at a higher T Cell count than 200 (?). Some things remain clear: There must be a “standard of care” specifically for women. More research is needed on women. And the “Guidelines for Use of Antiretroviral Agents in HIV-Infected Adults and Adolescents” must be revised to reflect gender-specific treatment for HIV/AIDS. Look for more information in the next issue of Women Alive Newsletter.

A Creed of Faith

Life holds for you no guarantees
It may be a stairway growing steeper
Yet if you take each step stride after stride
You’ll grow stronger, instead of weaker

You’ll have your ups, and you’ll have your downs
And even when you make it through
There may be times when you feel you can’t go on
That there’s nothing more that you can do

It’s during those times of doubting,
During those moments of great despair
That you must lift your head up to the sky
Asking for guidance through your prayer
That you must lift your head up to the sky
Asking for guidance through your prayer

Ask the Lord to give you the strength
To make it through another day
Stare each of your problems in the face
Never yielding, and simply say

“I will do the best that I can do
I won’t let anything hold me down
I’ll concede the battle, not the war
I will always come back around

God beside me, there is nothing before me
That can block the way that I must go
The obstacles that lie in my path
May make the going slow

But I’ll never quit, thus, I will not fail
And in my life you’ll always see
That I will give it all I’ve got
I will become the best that I can be!”

“VAGINAL CREAMS CAN CAUSE CONDOM FAILURE” Reuters Health Information Services (03/30/99)

Certain vaginal creams can cause condom failure, report researchers from Baylor College of Medicine in Houston. The scientists exposed 20 condoms to 10 over-the- counter vaginal creams for five minutes each, observing that condoms exposed to products with vegetable or mineral oils took less time to burst when inflated with air. The researchers, who report their findings in the Southern Medical Journal, note that vaginal products containing vegetable or mineral oils may be associated with decreased condom integrity. They advised women using over-the-counter vaginal products containing the substances to use caution.

VISTA Volunteer Coordinator Position Available!

Seattle Treatment Education Project is seeking a VISTA who will develop a complete volunteer program, including recruitment, training, and managing a volunteer pool that performs a variety of duties. VISTA Volunteer Coordinator Responsibilities:

• Develop and implement a campaign to recruit volunteers
• Develop a volunteer training program including a volunteer manual
• Coordinate volunteer appreciation events and activities
• Train volunteers to answer STEP’s TalkLine and maintain HIV/AIDS treatment resource library
• Assist with production and distribution of STEP Perspective (HIV Treatment Journal)

VISTA Volunteers receive a stipend averaging $730 a month and an education award of $4,725 (or cash award of $1200) + med./vac. Persons receiving public assistance or disability benefits can serve as VISTA volunteers and continue to receive those benefits in addition to VISTA compensations

Call the MLK VISTA Program for more information and an application at (206) 675-3200.

How would YOU spend public money?

Ever wonder how money is allocated for HIV/AIDS services? County Executive Ron Sims wants to hear what YOU have to say. He’ll be hosting a series of Budget Outreach Forums to gather public input on budget priorities for the year 2000. Each forum will highlight a unique set of issues. They are designed to gain early public input about budget priorities and to increase awareness of the County’s budget priorities. There were dramatic cuts in 1999 for HIV/AIDS prevention and STD and TB control programs. The direct link between STD rates and HIV transmission is clear. If we hope to avoid additional cuts to these programs in the future, we must act to ensure that HIV/AIDS and STD prevention funding is a priority in the County’s year 2000 budget. So please show up at any or all of the forums and be HEARD. If you have any questions, please contact Budget Outreach Coordinators, Lorrie McKay at (206) 296-4002, or Amina Ghadder at (206) 296-4327.

Schedule for Budget Outreach Forums:

Tuesday, May 4 - Health and Human Service Issues 7-9pm Shoreline Conference Center, Highlander Room18560 1st Avenue NE Shoreline, WA

Tuesday, May 11 - Law, Safety and Justice Issues 7-9pm Regional Justice Center, High Profile Courtroom High Profile Courtroom, 3rd Floor 401 4th Avenue North Kent, WA

Wednesday, May 12 - Rural Issues 7-9pm Enumclaw Senior Center 1350 Cole Street Enumclaw, WA

Thursday, May 13 - Growth/Transportation/ESA Issues 7-9pm Eastgate Public Health Center 14350 SE Eastgate Way Bellevue, WA