Nutrition – Living with HIV

I’m tired of feeling bloated and gassy. I’m tired of having so much diarrhea. But how do I change a lifetime of bad eating habits? Nutrition is not just important to PLWH but it is also a complex and highly important field. I don’t take this lightly because there is lots of help and many funded nutritional services to assist groups and individuals. Many PLWH also have contributing conditions, such as diabetes, that often complicate a nutritional diet. Please get professional help when you need it.

So why talk about nutrition now? I’m no expert. I am, however, someone who is experiencing change in my body, in my nutrition and in my diet. That’s why I’m talking about it right now. And I want you to contribute as well. I want to hear your stories of diet challenges and successes. I think the more we know about how each of us have overcome adversity the better we can be at making positive changes for our own lives. I caution folks to seek advice before making drastic changes that could impact your health. However, small trials and changes could help to make a difference in our quality of life every day.

Earlier this year I was diagnosed as lactose intolerant. I was asked to remove all dairy from my diet for a month. I also stopped taking all fiber supplements. All of this helped to reduce gas and confirmed my intolerance to lactose. To compensate (badly) I continued to choose carbohydrates as a substitute for cheese, chocolate and carmel. Since that time I have slowly introduced Lactaid products such as milk, cottage cheese and even pills. Small amounts of shredded cheese on a salad or as a garnish have been fine so far. Every day is an experiment and I’m learning to do so very carefully.

In the meantime my body mass index is reaching new heights with every carbohydrate. So now it’s time to think diet. I was at a school auditorium recently and I was so uncomfortable in the seat it was all I could do to sit during a performance. I digress. My long time ingrained nutrition for PLWH has been that you do not lose weight. Because by doing so you lose good mass with the bad and that can leave you vulnerable to other diseases. For me, I think that time has passed. I need to do something more dramatic in my life that will also help to change the way I look at, choose and eat food. It is so easy to reach for those chips and munch until they are gone! (How did I do that? – guilt – Why did I do that?)

Each week for the past few years now I’ve been building body muscle by going to the gym and continuing to do some mild cardio exercise as I can tolerate. But it’s not enough. I want to lose unwanted fat and pounds I’m carrying. Maybe it’s the warmer weather but I tend to be more active now. I can get out in the gardens. I can make better food choices. And always remember, especially those of you whose immune system may not be up to par, food safety is imperative. Keep foods cold (in the frig or freezer), heat or reheat food very hot to destroy any bacteria, clean your food preparation surfaces, thoroughly wash your dishes in hot water, check the food ratings at any restaurant and don’t be afraid to return any undercooked food. Your health may depend on these measures to keep you safe.

I want to talk about gardening for a moment too. I know not everyone has the space, time or desire to grow their own food but you may want to try. The experts are saying the best way to grow tomatoes is upside down in a moss basket. I do plant a small garden each year. It does take some tending to but I enjoy the results. This year I’m planting sweet snap peas, tomatoes, bell peppers, cucumbers, lettuce, basil and dill. My garlic and green onions are already up and growing from the winter. Every year the conditions and production is different. Just the other day I made goulash with tomatoes from last year and both garlic and freshly cut green onions from my garden. I sure hope that organic growth helps me to metabolize better.

We all enjoy our comfort foods. I know I do. They are often meals that have been with us a lifetime. As one who lives in the present every day, I say enjoy them. I am on another adventure, another journey if you will, toward better eating, keeping active and enjoying life through new food opportunities. They say if you don’t buy it you can’t eat it but my grocery cart has a mind of its own. My bike is out of the basement and ready for inspection, I’ll just have to avoid the soft service ice cream stands this summer. Bona Petite!

What are your stories of diet challenges and successes?

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Dealing with Change

Dealing with change is a coping mechanism we must learn throughout life. Change is inevitable. At various stages of our life we deal with change differently. As we grow comfortable we don’t like our life disrupted, our routine hijacked or our internal system jumbled.

Much about change is also letting go. Letting go of the familiar, letting go of the baggage, letting go of those things that have and may continue to bring us pleasure. Some may be permanently and some may only be temporary. Recognizing the difference is important. Because change is inevitable.

Friends of mine recently moved. It was a big change. Many decisions had to be made along the way. Some of it became overwhelming so that it was hard to move forward. In some ways, mentally they have not yet moved. Change can be very hard. And it is a process. But inevitably we must accept our current situation until we are ready to change again.

Along with moving, there are several life changing moments that bring about stress to our lives. It is my belief that change is smoother when we focus on the positive things in life that help us to accept any change. Moments such as new diagnosis, additional illness, loss of a relationship (spouse, partner, roommate), loss of a family member, etc. Don’t forget changes that we sometimes celebrate like a new job, a new and exciting move, any recognition, graduation, etc. And those with a little trepidation like moving in a mother-in-law that is no longer able to be on her own. It may be a relief of mind to know she is safe, kids might like her around, you might like her around to help out, but you also lose a little privacy and things change.

We all deal with change differently. And that’s okay. It is, however, important to reach and accept the new reality. Whatever that may be. How do you deal with change?

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What’s the buzz? Tell me what’s a-happening.

Some of you might recognize this phrase from the musical Jesus Christ Superstar! The latest announcement from CROI about another “cure” has our social media all a buzz. First Berlin and now London and potentially another in Canada. In science achieving a state of remission is essentially a “cure”. Bravo! What’s the secret? Bone Marrow? Or is it really something much more complicated than that?

I’m cautiously optimistic. Let’s not quite yet pop the champaign. Are we on the verge of another breakthrough or are we on the verge of another political volley. Let’s ask ourselves: Who benefits from a cure? How will the testing and procedures be paid for? Will health insurance policies cover the expense? What about Medicare? Medicaid? World Health Organization? Will this become the new polio vaccine discovery that has world implications? This may sound pessimistic but I’m more of a realist. I would gladly get in line to receive the cure. I would also continue to advocate for those who need continued care, treatments and cure.

So what about you? Are you feeling more optimistic about a cure?

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When you mourn the living, it’s a hard way to live.

I recently saw the movie “Beautiful Boy” starring Steve Carell (photo above). If you haven’t seen it, you should. The story is about a family dealing with addiction. The title of my blog is a quote from the movie that really stuck with me. This family was living every day, every moment mourning the loss of the son they knew as he was growing up. But now as a teenager the son’s life was driven by his addiction, a condition the family could not understand. They were essentially mourning a past life without living in the present.

What was so striking to me was the similarity this had to the early days of the AIDS epidemic. Most in the full exposure to the epidemic were mourning the dead and mourning the living without a life of our own. It’s a hard way to live! I believe it is so important to have balance in our lives. We talk about deaths coming in threes, and yet isn’t it just a right of passage. Death is a part of our daily experiences but it should not consume our daily lives. Aunty Mame’s advice is still true today: “Live! Live! Live!” Focus on today, on your dreams and future while building sustainable friendships and networks to support us during our periods of mourning.

Do you live for today?

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Why do we hate on each other?

Is it about love? Or is it about the love of jealousy? Why should you be happy when I am not? Making room for hate in your heart or head is crushing to your ego. I want only the best for anyone and everyone. I can’t tell you what’s best for you but I can tell you that focusing on the positive has always been uplifting. Not only to me but to others as well. When you focus on the positive, others see you as positive and are drawn to you as a positive influence. Like a moth to a light. You radiate good vibes and strength in courage, faith, hope and life!

Each one of us has stories of being wronged, of feeling less than who we really want to be. I’ve learned to try and let them go. For me it is the best way to move forward with my life and continue to find a positive path. That sometimes requires a major change that is extremely scary. Sometimes it requires a set of small steps toward a goal. Whatever we must do, Just Do It!

I’ve talked to many who feel encumbered by their life’s circumstances that they feel unable to make changes needed to reach their goals. What about making smaller goals to help make us feel valued. Vacations can be exciting and energizing, even if it’s just a weekend away camping. We often times feel disappointed getting back into our old routines once we return home. (Sometimes we are grateful to get back to our old routines.) One thing I’ve learned to do over the years is to do something I would not normally do when I’m home. Mix it up. We do something different all the time when we are away. So why not try the same thing when we return home. Give it a try and see if you can’t bring part of that vacation home with you. Over some years now many are trying staycations that focus on local activities to keep everyone interested and active while being able to sleep in your own bed every night, maybe a bit too tired but then you know you’ve had a great time!

I say all of this because it is time to find the good in us all and work toward a better tomorrow. Call out your friends who don’t get on board. Realize hating on others is their problem to fix and not your responsibility. You are your responsibility. You are loved! You are valued! You are worthy! You are fearless! You are a warrior! You are my friend! You are welcome!

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Does Sex Sell?

Every day we are surrounded by advertising that uses provocative images to sell their product or service with an implied message that sex sells. Does Sex Sell? Most of us would say, well of course it does. But is that all we’re looking for? Does sex sell a new HIV drug to you? I would hope not. I would hope you would see beyond the sexual message and really understand the benefits and side effects of any new medication including a discussion with your physician (HIV specialist).

Beyond HIV, we just want to be human. I believe we are sexual beings. I believe we are highly motivated and influenced by sex. And, there is nothing wrong with recognizing our desires for a happy and healthy sexual life. More than ever I want to “normalize” my life outside of HIV. Staying adherent to medications and keeping undetectable gives me the strength and ability to focus on life, on faith, on exercise, on sex, enjoying any activity or anything outside of HIV. That’s what gives my life real meaning. Knowing that I can live with this disease and continue to enjoy the things I love in life, including sex.

I’d like to hear from you. What is your story? Does Sex Sell?

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What’s “normal”?

Normal. “Normal.” What’s “normal”? Like many terms we hear “normal” is used in several contexts. Some are good, while others tend to exclude or isolate. Certainly what is normal for me is not the same as what is normal for you. I’d like to think that our lives are not so different that we don’t have something in common. We “normalize” things all the time. Commuting, exercising, cooking, feelings, etc. The reality is that none of these are normal. Each are unique to the individual. Some may be shared with others but while we may go out to eat together we don’t usually eat the exact same things. By treating each other as unique individuals with respect we no longer need to use the term normal.  Instead we can celebrate our individuality.  What’s “normal” to you?

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Are we broken?

I recently experienced two separate situations where I felt someone wanted to fix me. I had to ask myself: “Am I broken?” HELL NO! As I described this to a friend of mine he said he felt the same way while at an AIDS Service Organization. He felt that he was treated like he was broken. He didn’t return there. Duh? Of course not. We are not pathetic losers with a disease. We are caring human beings looking to be treated with respect without pity.

If your first thought is “how can I fix this person” you are in the wrong field. I don’t have a shattered life that needs fixing. I may have some special needs that require assistance but I am not broken. This life we live is just like everyone else. We are all on our own path journeying through life. Our journey may lead us to many different places. At times we will seek your guidance. At times we want you to hear our stories. At times we just want you to listen. Whatever that may look like, whatever that may be or feel or care – we are not broken – we are human!

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Reaching young Black men

Our systemic barriers to people of color, especially in health, won’t come close to being overcome. What will make a difference are people in touch with youth and who continually whittle away at the stigma and misinformation spewed across our country. Not one of us has all the answers. It will take a village to drive down barriers, eradicate stigma and ultimately End the Epidemic.

The statistics are staggering.

  • Black gay and bisexual men are among the communities most heavily affected by HIV.
  • A young Black gay man now has a 60 percent chance of becoming HIV-positive by the age of 30.
  • Black survivors are twice as likely to experience any physical violence, twice as likely to experience discrimination and 1.4 times more likely to experience threats and intimidation during acts of hate violence.
  • Black survivors of hate violence are 1.3 times more likely to experience police violence than their non-Black counterparts.

My heart bleeds RED and I see RED and anger and sadness in every face. I’ve been told that it now has been 400 years since the first African slave ships arrived on our shores to brutality and inhumane conditions. Why do we continue to treat people of color as inferior? Reaching young Black men is the responsibility of us all. This week we recognize National Black HIV/AIDS Awareness and Black History Month (and always) so that we can bring attention to and raise our consciousness to eradicate HIV and End the Epidemic.

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What does U=U mean to YOU?

I am thrilled that U=U [Undetectable=Untransmittable] is getting more and more attention as an evidence-based practice for HIV Prevention. The science is compelling. This covers about 50% of the HIV population who remain undetectable. It is not meant to isolate anyone further but I do believe it is a worthy goal for those who may be struggling with treatment adherence. I also believe our medical/pharmaceutical personnel need to ensure that optimal medications are readily available for every PLHIV. Together we can End the Epidemic while freeing ourselves of further stigma and isolation.

But, what does U=U (You=You?) mean to you personally? For PLHIV it may mean a boost in self esteem. Knowing we are no longer “toxic” or feeling shamed. For some it may mean being freer to live and love and unashamed of giving in to our desires. U=U may additionally mean U=U+Me. The character Mr. Cellophane from Chicago probably expressed it best. We are invisible until we are not. You+Me means safe and consensual intimacy without fear.

“This Year I Am Determined Not To Live In Shame! ” – Darryl Calloway

I’m so proud to see our hearts and minds open to new possibilities and to live life to our fullest. What does U=U mean to you?

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