positive living

HOW TO USE HIV TERMINOLOGY IN CONVERSATION

On 13 October, 2022, in CHRONIC HEALTH & HIV & AIDS, CHRONIC HEALTH CONDITIONS, Uncategorized, by Cindy Pivacic

(DO’S & DON’T’S)

Using incorrect terminology when talking about HIV and AIDS can be insensitive and harmful to someone with the virus. Even if you are in a group of friends’ company where you assume everyone is HIV-negative, remember that someone in the conversation may be HIV-positive and may not have disclosed their status.

I remember a newly HIV-diagnosed client who approached me for post-counselling, telling me about their neighbour that came for a braai (barbecue) every weekend. The host was diagnosed HIV positive through assisting a person in distress by engaging in mouth-to-mouth resuscitation. This neighbour would regularly rant and show disgust towards people living with HIV. This person’s insensitivity was distressing to the HIV+ host and ensured sadly, that he has not, to my knowledge, ever disclosed his status. This kind of behaviour can be detrimental to the mental and physical health of an HIV person. Be aware of the language you use when talking about HIV around anyone, as you do not know who is HIV positive and possibly struggling with their diagnosis.

If a friend or relative does tell you that they are HIV positive, allow them to talk, listen to them and be understanding of their situation.

Do not say things such as:

How did you get it?
Who gave it to you?
How long have you had it?
Why am I not surprised?

Rather ask/say:

How are you feeling?
Have you started treatment yet?
How can I support you?
Have you found a good doctor?
I am here for you.

Consider rephrasing your terminology when talking about HIV using the examples below to avoid promoting discrimination and misinformation around HIV.

Instead of using AIDS (when referring to the virus, HIV) – use HIV or HIV and AIDS (when referring to both).
Don’t say, ‘to catch AIDS’, ‘to catch HIV’, ‘to pass on HIV’ – Do say, ‘to be diagnosed with HIV’, ‘to acquire HIV’, ‘to transmit HIV’.
Don’t use the phrase ‘body fluids. – Do use, Blood, amniotic fluid, semen, pre-ejaculate, vaginal fluids, rectal fluids, and breast milk.
Don’t use words like Victims, Sufferers, Contaminated, or Sick, rather say, People/person with HIV.
Unacceptable phrase: AIDS patient, HIV patient, Patient. Preferred term: Person with AIDS, Person with HIV, Person living with HIV, HIV positive persons.
A BIG no-no: Positives, HIVers, AIDS or HIV carrier(s). Acceptable terms: HIV-positive people/person, People/person with HIV, People/ person with AIDS

Be direct, non-judgmental, and supportive.

Tagged with: AIDS • AllLife • chronic • chronicc conditions • chronichealth • chroniclifecover • CindyHIV • Healthcare • HIV • positive living • Wellness

HIV Positive – Breastfeeding vs Formula

On 29 September, 2022, in CHRONIC HEALTH & HIV & AIDS, CHRONIC HEALTH CONDITIONS, Uncategorized, by Cindy Pivacic

HIV can be transmitted through breast milk and increase the risk of perinatal HIV infection.

Maternal ART can significantly reduce the risk of transmission through breast milk, but it does not exclude the risk of infection. In resource-limited locations, such as South Africa. The World Health Organization (WHO) proposes that mothers living with HIV should breastfeed exclusively for the first six months and continue breastfeeding for at least twelve months, including supplemental foods from the second half.

The mother’s health should be maintained with ART (Antiretroviral Treatment) adherence to decrease the risk of transmission through breastfeeding, and in doing so, support the mother’s health.

An HIV-positive mother can breastfeed and bottle feed simultaneously under supervision by their healthcare workers. The healthcare worker will reassure you that ART reduces the risk of postnatal HIV transmission even when the baby is on mixed feeding.

Mixed feeding may affect a good supply of breast milk. It is important to discuss options when considering supplementing with formula with your clinic, health nurse, lactation consultant or Doctor.

I was fortunate enough to have had both my children well before being diagnosed HIV positive. My personal choice at the time was to breastfeed. I did for thirteen and eighteen months, respectively.

Breastfeeding:

It comprises the correct percentage of nutrients your baby needs, including protein, carbohydrates, fat, and calcium.
It offers natural antibodies that help your baby fight illnesses.
It may increase your child’s intelligence.
It is always available and is free.

Formula:

It is convenient.
It is flexible.
Scheduling feedings may be easier.
You do not have to worry about what you eat. At times, breastfeeding mothers need to avoid certain foods.

Ultimately it is the mother’s choice and preference as there are benefits to both options. You decide what will work best for you with the guidance of your healthcare worker.

For more on HIV breastfeeding: HIV/AIDS: Infant feeding and nutrition (who.int)

A chronic condition can affect anyone. How you manage it is what makes the difference.

You can get coverage of up to 1 million rands for your chronic health condition and up to 10 million if you are living with HIV. SMS LIVING to 33857 to find out more.

I did!

Tagged with: AIDS • Breast-feeding • CindyHIV • Healthcare • HIV • HIV positive • positive living

DO I HAVE A CHRONIC HEALTH CONDITION, IF SO WHAT NOW?

On 3 June, 2022, in CHRONIC HEALTH CONDITIONS, by Cindy Pivacic

Chronic illness is a disease or condition that typically lasts for three (3) months or longer and may worsen over time. Chronic diseases generally happen in older adults and can usually be managed but not cured. The most common chronic ailments are cancer, heart disease, stroke, diabetes, and arthritis.

Chronic diseases, by definition, cannot be cured—even with significant lifestyle changes, medication, and other treatments. However, chronic illnesses can be effectively managed symptoms can be reduced through holistic management.

Occasionally we are given an incorrect diagnosis or are misdiagnosed as chronic illnesses can be misunderstood by the medical community. We may not have a name for what is happening to our bodies. It is, however, a genuine predicament that needs managing. Correct diagnosis of a chronic condition can potentially take a lifetime to identify. Hang in there even if you feel unable to ‘get it together.’

Generally, there is no easy cure for a chronic condition, so please do not head out on your own and try things that you think will work. Keep in mind others will bombard you with well-meaning suggestions to ‘try this’ for your condition and advise that you can cure yourself with yoga or the latest diet. These interferences can be upsetting and come from an uninformed place, laying the blame for your agony squarely on your shoulders as if you have not already done everything in your control to improve your health.

Having been diagnosed with numerous chronic illnesses such as cancer, strokes, TB meningitis, heart failure, and more health challenges has led to me enduring many medical interactions. Communications have been traumatic and led to lengthy procedures due to incorrect diagnosis and late detection. However, on the confirmation, the correct treatment and subsequent medication were dispensed, putting me in a position to live a meaningful and productive life.

Nobody is invincible. It can be frustrating to hear comments such as ‘just get up and get dressed’ or ‘you are too young to be sick’. Sometimes a chronically ill person is grateful to make it out of bed daily. Remember, you feel that pain; ignore the platitudes.

Not everyone will take your chronic condition seriously as it may not be visible. People may assume you are following a fad diet or feigning an intolerance to certain foods if you decline certain foods due to your autoimmune condition that can be managed but may still be considered chronic. Remember that any health condition lasting three months or longer will be regarded as a chronic disorder, even though your symptoms, referred to as a ‘flare-up’ may come and go.

Encourage people to ask you about your condition. It enlightens them and also helps you come to terms and normalise it in your head. Sometimes we need someone to listen.

There may be days when you can barely make it out of bed or experience immense pain. Attempt to smile through the pain and tell yourself you will be okay.

Medications you take may make you feel worse than the actual illness itself. The side effects may include nausea, fatigue, headache, loss of appetite, and possibly most awful, irritability and mood swings.

Should your physician recommend surgery, understand that it is not a miracle cure and will not automatically be the final solution as they will not always work for you, or they do, but you may still have pain.

Ultimately, what works for one may not work for another. Follow your doctor’s advice and stick to your medication.

Keeping your spirits up by allowing people to be supportive can add to your overall well-being and a positive mindset.

A chronic condition can affect anyone. How you manage it is what makes the difference.

You can get cover of up to 1 million rand for your chronic health condition and up to 10 million

if you are living with HIV.

SMS CHRONIC to 33857 to find out more.

I did!

DIAGNOSED HIV (+) POSITIVE, NOW WHAT?

On 27 May, 2022, in CHRONIC HEALTH CONDITIONS, HIV & AIDS, by Cindy Pivacic

Being diagnosed with HIV in 2004 was a nightmare as there was so much ignorance and misinformation surrounding the HIV virus by both the medical and public organisations.

I was never offered pre or post counselling for my condition. Once diagnosed, I realised what a predicament others less fortunate to access online information and counselling services must be experiencing. Sadly, as no pre, or post counselling was on offer, it left me to gather information and find ways of dealing with my diagnosis myself. I put the lack of a counselling offer, unacceptable, I might add, down to the year 2004, when diagnosed, to ignorance and uncertainty by many medical professionals, on how to proceed during this early HIV period.

I signed up to a do a Lay Counsellor and Victim Empowerment course, educating myself in the process and collecting information and skills to support others in the same predicament.

Before testing for HIV it is essential to get pre-counselling and be well-informed of the reality and practicality of what a positive outcome holds. Post-counselling is equally important as it informs you on what other resources are available and introduces ways of making lifestyle behavioural changes.

Once you are diagnosed HIV positive and have received post counselling which includes a review of your health and medical history, a physical exam, and several lab tests, you will be another step closer to facing the World.

Furthermore, your healthcare provider will explain the benefits of HIV treatment and discuss ways to reduce the risk of passing HIV to others.

The next step will be to have your blood counts done so that your healthcare provider can help you start the medication to treat your HIV (called antiretroviral therapy or ART) as soon as possible. Treatment with HIV medication is recommended for all people with HIV, regardless of how long they have had HIV.

Your blood count will be done next and include some of the following:

Viral Load

A Viral load test measures the amount of HIV in the genetic material in a blood sample and indicates how much of the HIV virus is in your body. The test measures the number of HIV copies in a millilitre.

CD4 Count

The CD4 count is a test that measures how many CD4 cells you have in your blood. These are a type of white blood cell called T cells.

Creatinine

Untreated HIV infection can lead to loss of lean body mass and result in reduced serum creatinine pool and the serum creatinine level, affecting your kidneys.

See https://www.aidsmap.com/about-hiv/other-blood-tests for other blood test information.

If your HIV is left untreated, it can cause substantial weight loss, often accompanied by diarrhoea, prolonged weakness and fever. HIV can also cause neurological complications with symptoms such as confusion, forgetfulness, depression, anxiety and difficulty walking. I know this as I, due to lack of medical advice on starting my medication, experienced blackouts, hallucinations, and loss of memory, amongst other acquired health challenges (I was unable to recall my four-digit pin, Doctor’s name, cell no. and more).

When coming to terms with your HIV positive status, you may find yourself shifting from your ‘normal’ mindset to cope and implement new strategies to take control. Know that there are actions you can implement to cope with your diagnosis.

Talk to a counsellor or trusted friend and try to have open, honest conversations about HIV, feelings and goals.
Educate yourself as much as you can with up-to-date information about the dis-ease.
Being diagnosed with HIV is life-changing news. Listen and learn from people that are living openly with their HIV status.
Get moving and exercise for an hour at least 3 to 4 times a week, even if it is just walking!
Review your eating/diet habits and adjust accordingly. There is little or no need to change if you currently practise a healthy eating lifestyle.
Get enough sleep.
Adhere strictly to your medical treatment.

A chronic condition can affect anyone. How you manage your health makes the difference.

You can get cover of up to 1 million rand for your chronic health condition and up to 10 million cover for your HIV status, SMS LIVING to 33857 to find out more, I did!