T-cells dropping like flies...

For ten years my cell count was basically the same. I went to the doctor faithfully and was proud of my active sex life and great sense of humor, two known immune system boosters. And of course I paid attention to relaxation, exercise and nutrition… even when depressed or relapsing I would try to take care of my diet. Six months ago I was also diagnosed with Hepatitis C, another fatal blow. Up until that time I had days where I didn’t even think about being HIV positive. I had a life with other concerns like going to outpatient treatment for two years, anger management, court appearances, AA meetings, and two years of community service; I had a full plate. Anxiety level went up two billion percent after discovering I had two fatal diseases - all this talk about the side effects of the triple cocktails and how hard they are on your liver, so I wigged out and went to see a specialist. He recommended a three-month follow-up to get a base line, and would send the results to my primary doctor. Three months of anxiety later I had relapsed, which was partly due to the anxiety of waiting for the doctor. He was either too busy or he forgot. So by the time the results were in to even talk to the other doctor after reminding them, they decided I needed a biopsy. I said, “No thank you boys, no more invasive surgery for me.” I then decided on alternative acupuncture twice a week and milk thistle. Cells dropping like flies now. I then decided before it’s too late and cells get too low, to change providers. I needed a doctor that specialized in the field rather than sticking with my original general practitioner - a doctors’ clinic that I had been going to for forty years - in favor of a doctor that has real knowledge of this dastardly deadly killer disease.

Breaking Through to Therapy

Accessing care for myself has always been difficult. One of my challenges is that my provider is a learning hospital, which means the doctors and therapists change every three to six months, or a little longer for consulting doctors. This has been critical and directly affected my well being, especially during times of illness. Here is a poem I wrote during one of my illnesses:

Tomorrow I begin
To bleed and regurgitate my life.
I’d like to believe it will
Be over then.
However, is it ever really Beaten?
Or does it just wait again for the shadows to begin?
The doubts when I’m ill;
It creeps in again. My body speaks of abuse
when it hurts. It bleeds loss of innocence,
An inability to trust, an incohesive
Blend of mind, body, and spirit.
It’s a set-up, a bust.
What are the coping skills that get lost?
What is the method of cost?
Grieving healthy, is this constructive?
Am I abusive to myself?
My questions are limitless.
Somewhat overwhelming are these emotions I feel.
A Band-Aid isn’t going to do it.
I’m overflowing to the gills.

November ‘98

I expressed my desire for a woman therapist, and thank goodness my needs were met. I also wanted to stay with my nurse practitioner of five years. My therapist and nurse practitioner make a great team, and my life has changed. It was very important to me to have a woman, because I’m dealing with issues surrounding physical and sexual abuse from when I was a child. I needed special help sorting through those feelings. It meant so much to find out I wasn’t crazy and my feelings were validated.

What I found when I started the protease inhibitors was a new low in depression. I stopped taking the meds until I could convince myself that it was worth surviving despite the side effects. One thing for sure that I’ve learned is that blood work speaks the truth; they worked remarkably well. I can’t say it wasn’t worth it, but will I try it again? You bet! But I hope to be better prepared and well supported.

How to break down the barrier between you and your doctor:

• 1. Art was my method of communication and I started showing my pictures to my nurse then my therapist.
  
  
• A written journal for diet, meds, and feelings
  
  .
• BABES love food.
  
  
• A peer counselor / consumer family advocate. When a woman first finds out she’s positive it’s great to speak to someone else who’s positive. I’ll start off by saying I’ve been positive 13 years. Right off the bat the woman is feeling more at ease when I ask how she is feeling, does she want to tell anyone else, does she need help with this? Does she need case management? Medical support? We also provide telephone support from 10 to 6 M-F at Babes.

What is HARM REDUCTION?

Brushed your teeth lately? Look both ways the last time you crossed a busy street? Wash your hands after going to the bathroom? Have you ever changed your eating habits in an effort to get healthier? How about smoking? Have you quit, reduced the number of cigarettes you smoke daily, or switched to low tar, low nicotine brand? If you’ve done any of these things, congratulations, you are an accomplished practitioner of harm reduction.

Harm reduction is not rocket science; it means exactly what it implies: you reduce the harm of some activity. Most of us practice harm reduction all the time just in the course of blundering through life. Once in a while society even legislates harm reduction. Seat belt, child safety seat, and helmet laws are all examples of where the government has stepped in and made harm reduction mandatory. Unfortunately, many are unwilling to be so open-minded about harm reduction when it comes to substance users.

Harm reduction as a public health intervention grew out of efforts to halt the spread of HIV and other diseases among people who inject drugs and it is here that it became controversial. Rather than pass judgment on people and lecture or threaten them, harm reduction takes individuals as they are and works with them to reduce the harm associated with their substance use. The unofficial motto of the harm reduction movement is “any positive change.” Or, as the founder of the first needle exchange program in the US put it: “Dead junkies can’t get clean.”

Over the past 15 years individuals and organizations both here and abroad have recognized that harm reduction is a rational and humane response to the cycles of substance use and have developed programs to help users limit the harm caused by their use. One of the most notable examples of harm reduction is needle exchange programs. Other examples include condom distribution and safer sex messages, encouraging individuals to change when and how they use, medical care, and drug treatment.

Can you identify the harm you need to reduce?

What is harm reduction? For me harm reduction is anything that does not make things worse. If I really wanted to make a mess I’d drink on my proteases or eat sugar when I’m diabetic. But what can I live with that doesn’t cause cancer or comas? I thought living in any kind of relationship would be better than alone… WRONG… stress from relationships was one of the first recognizable harms that I could put my finger on. My T4’s jumped up 200 when my husband left. New boyfriend and the stress of relationships started again only I spotted the stress a lot sooner. Learning boundaries like living alone has really helped cut down on these types of stresses. Another way for me to recognize harm reduction was to have support. I soon realized I did not have to deal with this illness alone and that there was always someone to call to bounce ideas off of. What a wealth of knowledge we have at BABES. It helps just knowing all I have to do is ask the question.

Another aspect of harm reduction is the fact I smoke pot. For years I’ve had less than a normal appetite. I’ve had to hide the fact due to being on a military pension and I could lose all benefits. Needless to say my weight is normal due to the regular schedule of eating. Dealing with this is always so touchy due to the law… and my medical provider is not completely convinced. This keeps me from being honest but I’m not shooting drugs and I’m not wasting. A lot of what I’ve found with a lot of appetite stimulants is that they affect the liver. My liver was already enlarged due to meds so I try not to OD by bombarding myself with to many strong meds at once. So again I ask, what is harm reduction to you? Is it working and are you O.K. with whatever you’ve decided and if not can you identify the harm you needed to reduce?

I was your neighbor next door...

With my hands cuffed behind my back, I wondered how things had gotten so screwed up. I just wanted to have fun, that was all. I was at the wrong place at the wrong time. I was lying down and I heard a loud BANG BANG at the door. I sat up and peered out the window - the police had the place surrounded. I heard another loud bang and they kicked the door down. Then there was shouting; everyone hit the floor. It was something like out of the movies. They held guns to our heads - these guys were not messing around.

From that day forward I knew that the cops were no friends of mine. Because of my age they figured they could scare me and I would tell them everything. Well guess what? They were wrong. After an hour or so they figured they’d cool my heels and they stuck me in a cell. When I got out I thought that there wasn’t going to be any next time. I was not going back there again. Well guess what? Not long after and guess where I was one more time... it took a while but I was back. When I got older I began to experiment with heroin, and I developed a big problem. If I went to jail I knew I’d be sick and they don’t care if you are in jail - its cold turkey. To all of you this may sound like I was a terrible person, but guess what folks, I was your neighbor next door. If you want to help legalize, you should know that some of us are going to continue to use. Putting us in jail is not the answer, continuing to build more jails, and giving mandatory sentences is not the answer. Filling our jails with people that have never committed violent crimes is just ridiculous. Instead of cracking down on kingpins they are more likely to get small time drug offenders, who are most often women.

Harm Reduction with Imani Woods

Want to have a saner life? Want to be better to yourself and those around you? Then come hear IMANI WOODS. She is an expert in the area of harm reduction and she’s coming here to BABES to talk to YOU! She’ll fill you in on what harm reduction is, how it can work for you, and how you can develop strategies to include it in your own life. Imani will be here Friday, April 16, from noon to three. We will have lunch and as always, childcare is provided. If you have any questions, give us a call at 720-5566.

New Research on Women & Self-Advocacy Training: Learn how to take control of your life and health with information and skills. May 22 – 11 to 3

• Researchers, doctors and people with HIV agree that patients who advocate for themselves tend to live longer, better lives. But what are the tools you need to be an effective self-advocate? What gets in your way of advocating for yourself?
  
  
• Brian Coppage (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.
  
  
• We’ll take a break at 12:30pm for lunch!

Let’s go to the Zoo / Aquarium!

It’s springtime! What better way is there to spend a sunny day than by taking a walk in the Woodland Park Zoo? See the lions basking in the sun, the rhinos frolicking in the mud, and the monkeys swinging through the vines. Or if it happens to be raining, which can happen from time to time here in the great Northwest, take a trip to the Seattle Aquarium. See the underwater world of Puget Sound and beyond. See the sea otters swim, watch the iridescent jellyfish do their thing… you get the picture. We have FREE tickets for the zoo and the aquarium here at BABES.

“High Tea in Heaven”

Meet me for high tea in heaven…
Where itty-bitty sugar cubes are
“incognito” giggle pills that I slip
in your drink (as you blink!)…

Heaven is a “haven”
For You and I
And a love is misinterpreted
By the shrewd, judging eye

And if Heaven is the only place
Where I can sip of Amazing Grace
I will wait there (tick tock)
Keeping crumpets warm (and my appetite strong)
To consume there In our “special place…”
-Stacy Todd

The Power of Prayer

Advanced AIDS patients who received an hour of prayer (or “remote healing”) six days a week for 10 weeks were significantly healthier than those who received no prayer, according to a study led by Elizabeth Targ, M.D., director of the Complimentary Medicine Research Institute in San Fransisico. During the six-month study, patients who were prayed for required 85 percent fewer days of hospitalization and 29 percent fewer doctor visits, and developed 83 percent fewer new illnesses than the control group. The 40 remote healers involved came form seven different religious and healing traditions.

-Natural Health, April 1999

In The News...

Discrimination: Girl Scouts sued for denying admission to HIV+ third grader
KAISER DAILY HIV/AIDS REPORT
Thursday March 11, 1999

In what is believed to be the first HIV-related discrimination suit filed against the Girl Scouts or Boy Scouts, an 8-year-old HIV-positive girl Wednesday sued the Girl Scouts for initially denying her membership, USA Today reports (Bacon, 3/11). “This lawsuit really addresses a national problem,” said Legal Action Center spokesperson Sally Friedman, who represents plaintiff Quashawn Donovan. Friedman charged that the Girl Scouts “have an obligation to educate their volunteer leaders that HIV exists and it cannot be transmitted through casual contact.” According to the suit, Donovan's mother was turned away “by troop leader after troop leader”in upstate New York, until months after the first rejection, when she finally found a troop that would accept her daughter. The Legal Action Council is accusing the local Girl Scout council of discrimination and the national organization with “aiding and abetting” that discrimination.

May is Masturbtion Month! We’ll let you know more about that next newsletter - stay tuned. But if any of you BABES would like to send us articles, letters, stories, thoughts on sex and relationships, we’d love to print them in the May newsletter.

Computer Info...
A BABE found this site on the internet (www.freeI.net) and thought it might be of interest to some of you soon-to-be cyberbabes:

Freei.Net is leading the way in making your monthly Internet access fee a thing of the past. We’re giving you 100% free Internet & Email services! So, feel free to create accounts for all your family members. And hey... tell a friend.

Confidentiality: Freei.Net respects your privacy! You’ll remain totally anonymous. We don’t need to know your name, telephone number or your address. Why, you ask? Because we’re not going to send you a bill!

Health Corner

by Joanne Maurice Diarrhea Dire Straits - What To Do

The new protease inhibitor drugs are great for dropping your viral load, but they can also create some other unpleasant side effects. For some of them, diarrhea is the most common side effect. The pharmacist can give you anti-diarrhea medications to slow things down, but what you eat, or don’t eat, can also play a role in causing the diarrhea. I often hear stories of people eating a double burger, large fries and soda, and then wonder why they have to make some fast trips to the bathroom. So, what do you do? Read on.

The medications you take to keep the virus under control can stress out your gut resulting in diarrhea among other things. If you get the ‘runs’ there are some foods you should avoid to keep things from getting worse. Certain foods are meant to move things along in the gut because of the amount of fiber they have, so these are the ones you want to avoid. Other foods simply become hard for your gut to digest, so you need to eat other foods that pamper the gut instead.

If you are a person of color, you may need to greatly decrease the amount of milk and other dairy products you eat. A lot of ethnic groups have trouble digesting the milk sugar lactose. Just being HIV positive can, in time, create lactose intolerance which the is the inability to digest the milk sugar. Lactose intolerance can cause things like bloating, gas, nausea, diarrhea and in some case vomiting. You can try LactaidÒ if you really want to have milk, or you can try milk substitutes such as rice or soy milk, Mocha MixÒ or other non-dairy drinks. Aged cheeses such as Swiss, Parmesan, or sharp cheddar have very little lactose in them and may be better tolerated.

High fat foods are hard for the gut to handle when diarrhea is happening. Think of all that fat as just helping grease the ‘pipes,’ causing the food to go through like a freight train. Most fast food places serve up foods high in fat, you know, French fries; chicken, hamburger or fish sandwiches, burritos and tacos with the works; you get the idea. You will know if fat is the cause of the diarrhea if your stools look more gray than brown, float, seem greasy or smell. So avoid the fast food joints or as much as possible, choose foods that are not so fatty, like grilled chicken, baked potatoes with a small amount of margarine or salsa, or at least ask to have the mayonnaise and special sauces kept off the food.

If the diarrhea seems more watery than solid, please remember to drink lots of fluids to keep from getting dehydrated. Drink filtered water, diluted juices, diluted broth, and sports drinks. Do not drink highly sugared drinks like KoolAid, regular sodas, or apple juice. You can also suck on popsicles, juice pops or ice cubes. White rice is the big winner when it comes to soothing the gut and helping put on the brakes. Try the following recipe when things are too loose. Cook 1 cup of white rice, like Basmati, in 6 cups water for 40 - 60 minutes. Season with a little honey or bouillon. Eat frequently through out the day. You’ll find a handy table listing foods to eat or not eat that you can post on your refrigerator or keep in your pocket. If you have any questions, you can contact me at 731-5134.

FREE VISIT PROGRAM at
Bastyr Natural Health Clinic

Natural medicine's basic approach is to help your body heal itself. At the Natural Health Clinic, you become a partner in your own healing, under the guidance of a naturopathic physician, a specialist in acupuncture and Chinese herbal medicine, a nutritionist - or a team of practitioners. Natural medicine is particularly effective for prevention and relief from, chronic and degenerative health conditions. It can provide support for your immune system and is often effective in treating allergies and asthma. If you want to control your weight, stop smoking, or overcome an addiction, a 'natural' approach can help.

We have some applications at BABES for the Ryan White Free Visit Program. If you meet qualifications, the clinic will send you coupons for free visits. Each coupon entitles you to one free visit (of any kind) to the clinic. Each patient is assigned an ID number which is written on the coupon to ensure confidentiality. They can only accept applicants that are HIV+, have a (single) income of less than $16,100 per year, and who are not covered by insurance for natural medicine care. They also need a letter of referral from your primary care doctor. We have applications at BABES, contact Deb Hudson at 206-720-5566. If you need more information, you can call the Bastyr Clinic at (206) 834-4170 and talk to Erica LePore or (206) 834-4178 for Jennifer Gay.