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.
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A chronic condition can affect anyone. How you manage it is what makes the difference. |
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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. |
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SMS CHRONIC to 33857 to find out more. I did! |
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I have been living with HIV for over seventeen years and have overcome many and varied forms of chronic conditions associated with my HIV status. Between 2004 and 2008 I was afflicted with TB Meningitis, two strokes, shingles, pneumonia and Cancer (Angioimmunoblasticlymphadenopathy, a rare and aggressive form of cancer of the glands, associated with HIV) and later, in 2018 a massive heart attack resulting in a double bypass.
In spite of the above afflictions, my viral load has remained undetectable at under 40 copies per millilitre since 2009.
HIV is manageable! We have all heard that by now.
BUT, did you know U=U means Undetectable = Untransmittable?
People living with undetectable levels of HIV cannot pass the virus on through any form of sexual activity.
Effectively, if a person follows their medication regimen and has an undetectable HIV viral load, they have no risk of passing the HIV virus on to anyone.
A person’s viral load is considered ‘durably undetectable’ when all viral load test results are undetectable for at least six months after their first undetectable test result. Most people will need to be on treatment for 7 to 12 months to have a durably undetectable viral load.
If you are undetectable, you will still test positive. This is to be expected and does not mean that your medication is not working. You are essentially not infectious.
Why will you still test positive for HIV even if you are undetectable?
Antibody tests do not detect HIV. Instead, they identify antibodies that the immune system produces in response to HIV infection.
Antibodies are still present in individuals living with HIV—even people who have suppressed their viral load. Meaning that people living with HIV will still test positive for HIV on an antibody HIV test even if their viral load is undetectable. The virus may be undetectable, but antibodies are still present and detectable.
What is an Antibody?
An antibody is a protein produced by the body’s immune system when it detects harmful substances called antigens.
What is an antigen?
Any substance that causes the body to make an immune response against that substance. Antigens include toxins, chemicals, bacteria, viruses, or other substances entering from outside the body. Body tissues and cells, including cancer cells, also have antigens that can cause an immune response.
In the early days of HIV, we used antibody and ELISA tests, and some countries still do. Newer tests are available and often combine an antibody test with an antigen or protein assay, which provides added sensitivity for early infection and, consequently, detection.
Antibodies allow our bodies to remember a specific infectious agent—like a particular strain of flu—and then respond swiftly if exposed to it again in the future. On developing antibodies to a virus or in reaction to a vaccine, we may host those antibodies for life.
You will remain undetectable as long as you continue to take your HIV treatments as prescribed!
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 cover for your HIV status, SMS LIVING to 33857 to find out more, I did!
Read more on Centres for Disease Control and Prevention (CDC): https://www.cdc.gov/hiv/risk/art/index.html
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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!
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A very concerning and unfortunate incident arose yesterday when a client contacted me.
This person had unknowingly been exposed to the HI virus in the middle of last year (2014), when an individual cut themselves badly and the client had an open wound at the time which was not well covered.
The infected person only informed my client when they, themselves, found out recently, so we are talking in the region of a six (6) month gap.
Prior to contacting me, he/she went to their GP who decided to test, rightly so, by doing the Elisa Test, which is by drawing blood rather than the Rapid Test which is a finger prick, returning a result in 10/20 min the Elisa was sent to a laboratory, results back late afternoon.
The Doctor decided in the interim, that as a safety precaution the client should commence taking the 30 day treatment of Prophylactics.
Th client obviously hit a panic and subsequently made contact with me.
Sadly the time-span had elapsed, as you only have a 72 hour period post exposure to potentially prevent yourself becoming infected.
I was horrified but ecstatic that someone had advised him/her to make contact with me as they were understandably in a state of panic.
After explaining, reassuring and sharing as much information as I could, it was now a matter of waiting……….
Dear Doctor…..how stupid can you be, this person is given false hope as you were either not paying attention to the time frame or you are seriously careless, unacceptable!!
Fortunately a negative result came back, it’s one of the times you don’t want anyone to say “you are Positive’!
I made contact with the client and asked permission to share this incident as I believe there is still so much unknown and misinformation in the market place and when it comes from a ‘trusted source’ like a medical person, even more scary.
I have obviously kept the persons name and the area out of the post as it is a confidential matter.
I have however posted the comment he/she shared with me later today when I followed up. it reads as follows:
2/10/2015 16:32: Cindy Pivacic HIV: I hope you have recovered from your ordeal.
Client: ‘Thanks.. I am, it’s an experience that I will never forget. I have a new understanding and respect for being “tested”. It’s an overwhelming experience. My body truly ached with the tension and waiting for my results was daunting.
The nurse that took my blood was great! She actually stopped and asked if I was ok… she was really caring which calmed me a little.
I know now that I truly don’t know enough. And I thought that I did. #embarrassed
Thanks again for your advice and support… u spoke sense and also what the next step was if I was positive and that life does go on and it can be done. U say it with confidence, and that’s what made me feel ok’.
2/10/2015 16:44: Cindy Pivacic HIV: So glad that you are in a better space, it’s not a pleasant experience at all and glad I could be of assistance. I am sure you will become a great advocate getting people to get counselled prior to testing 😉
Client: 2/10/2015 16:47: ‘THANKS. .. I definitely will. I will be passing it on where I work.
It was a scary step I took to go public with my HIV status on the 22 January 2011 and I haven’t looked back since.
Thanks to Charlotte Kemp from www.nichetraining.co.za and Shawn Fouche from http://socialmediasolutions.co.za as they ‘forced’ me to put myself out there and do something that was only a growing thought at the time.
What happened that day, after many stops and starts in the constructing of my website, www.cindypivacic.co.za was that I went around to Charlotte and finalised a few posts, closed my eyes and pressed the send button to go public. The amazing support and feedback that came my way from the get go was astounding and the backing has never dried up.
One of my decisions to go public was to provide access to others living with HIV; a place and person they could relate to in the same situation, enabling them to source/share information and receive support.
I am happy to say people have found me via many of the social media forums and I find myself in the fortunate position to assist by communicating reliable information to those infected and affected.
My health situation has been great for the last seven years having dealt with various acquired afflictions such as pneumonia, shingles, two strokes (2005 & 2006), TB Meningitis as well as Cancer, namely Angioimmunoblasticlymphadenopathy ;-).
I attribute my present good health partly to the fact that I disclosed my status, thus removing the burden of silence which leads to stress, leading to ill health. My Mother Lindsay Heydenrych (80 yrs) and on Facebook I might add, has been my greatest support over the years and for this, I thank you.
November 2014 I hit my 10 year anniversary of living with HIV & AIDS and am sure I will be around for a long time to come and know that there are no wrong questions……if you don’t know the question, you certainly won’t know the answer, ask!
Hopefully by doing what i am doing we will remove that dreaded word, ‘Stigma’ . Think before you use it and refer to the virus as a ‘chronic illness’ instead.
Let’s get the year going with this; Spread the word not the Virus
Thanks to ONE and ALL for your ongoing support
#TakeCareBeAware
Regards
#CindyHIV
Workshop HIV & AIDS – Let’s ‘THINK’ Are you a JUMP ahead?
I am looking for Event Companies that are capable of putting 2015 Training Workshops together, start to finish, includes:
- Venue hiring
- Database – plus mine
- Travel, planning….the works!
WHO is up for the challenge in Cape Town, Gauteng and KZN
I require established organisations
with at least 3 to 5 years experience, no newbie’s please.
See attachment for content of Workshop and if you are interested, contact me please at cindy@cindypivacic.co.za for further information.
CONGRATULATIONS Dear Virus…..we have made a DECADE!!
