What now?? Living with Uncertainty – Living through a Pandemic

by Dr. Robin Murray, Clinical Neuropsychologist, Psychologist.

In these challenging Covid times Dr. Robin shares her experience, thoughts and helpful tips on staying positive.

This is a topic that is on our minds particularly here in Sydney. We have been Covid free for quite some time but now face an increasing number of cases! And I know this has been so for Canadians and Melburnians for quite some time. Living with uncertainty isn’t easy- I know I spent 2020 feeling quite low, and so did many of my friends.

In reality though, life is uncertain. We think we are sailing along smoothly and then something unforeseen happens to turn our lives upside down. Almost three years ago I lost my partner very suddenly. I knew he did not have many more years to live but thought I would be there to look after him as he grew older and then suddenly he was gone. We have probably all had similar experiences and lived with the grief and pain that followed. But we weren’t prepared for Covid nor were we ready for wearing masks, sudden lockdowns, quarantines and the closing of borders.

It hasn’t been easy but we have gradually come to realise that luxuries like travel abroad may not return for quite some time. The poet Keats first coined the term, “negative capability” which means the acceptance of “uncertainties, mysteries, doubts, without any irritable reaching after fact and reason” - this is perhaps hard to do but here are some ways we may try out to see whether they can help us.

• If you are worrying about becoming ill with Covid, calculate the probability that this is actually likely. What is the rate of Covid infection in your state or country? Let’s say 1 in 250,000, then consider this figure and notice how low the probability is for you. If you have been vaccinated the figure will be miniscule.
• Don’t believe everything others tell you or even everything you think. Look for the facts or check with experts.
• Find healthy ways to look after yourself. Perhaps you enjoy walking, swimming or dancing but don’t sit at home worrying.
• My Welsh grandmother used to say “Don’t worry about things you can do nothing about”. And this is so true but we often forget this.
• Do something to help others. Would you enjoy offering to babysit for a friend, helping out at a charity you value?
• Stay away from negative people!
• Anxiety involves worry over unpredictable events - or telling yourself negative stories about an uncertain future occurrence. People who are already in a negative frame of mind (people who are depressed, anxious, in pain, or grieving) will be more likely to focus on the negative future outcomes than the positive future outcomes. Imagine someone who is anxious and who doesn’t particularly want to go to Bali but feels forced to go by her family.  Her thoughts will include a lot of "what ifs".
  • What if I get diarrhea
  • What if my purse gets stolen
  • What if I get kidnapped by terrorists
  • What if my plane crashes

These are things that we can't predict and often are extremely unlikely. However, the more we focus on them, the more terrified we will be of the trip!  It is better to focus on the positives - bike riding through the rice paddies, yoga on the beach, seeing your friends who live there, visiting a coffee plantation, or watching a Balinese dance performance.

The likelihood that you will actually see a Balinese dance or gamelan performance (if you want to) is much higher than the chance that you will have your purse stolen.

These are just some thoughts that have been helpful to me and to others. I hope they may be helpful to you.  I would love to hear your thoughts! 

          Note:

Feel free to attend our weekly Dragon Talks (see below Calendar of events) and meet Dr. Robin or write to This email address is being protected from spambots. You need JavaScript enabled to view it. and mark attention Dr. Robin.

Cardiovascular Risk and You

by Dr. Charmaine

We had a special guest to Dragon Talk (June 2021), Dr Paula Harvey, cardiologist and co-director of the multidisciplinary Cardio-Rheumatology clinic at the Women’s College Hospital, Toronto, Canada.  I am going to give you a brief summary of the evening and I thank Paula for permission to use these images.

Did you know that by having an autoimmune disease we have at least twice the risk of developing a cardiovascular complication? In fact, cardiovascular complications are the #1 cause of death for us. So this is an important topic.

The inflammation can effect any part of the heart, a complicated organ, to be sure.

(Prasad M et al: 2014 CardioRheumatology, Nat Rev Cardio doi 10, 1038/cardio 2014.206)

The following diagram shows how the inflammation isn’t only in joints but also along our blood vessels. These are PET scans showing where there is inflammation. The person on the left has uncontrolled inflammation of an autoimmune condition. The person on the right is a control.

 (Mehta et al, Ach Derm 2011)

So….what can we do. There are risks that are non-modifiable such as our age, gender, and race. However, there are modifiable risks and these are  what we need to pay attention to.

Starting in the top left corner and moving right

      1st line: sleep, salt, smoking

      2nd line: cholesterol, sedentary lifestyle, sugar, obesity

      3rd line: stress, diet, depression.

We need to “know our numbers”

• blood sugar
• lipid screen (cholesterol, HDL, LDL, LipoProtein A)
• blood pressure
• Inflammatory markers (such as CRP, ESR)

We need to take our medication to keep our inflammation at a minimum not only to protect our joints from damage but also to prevent vascular and cardiovascular complications.

We need to monitor our numbers semi-annually and some, such as inflammatory markers, more often.

Some of our anti-inflammatory medications can cause our numbers to shift. Eg, prednisone (prednisolone) can cause an increase in insulin resistance and a rise in blood sugar.

JAK inhibitors such as tofacitinib ( Xeljanz)  can cause a shift upwards in cholesterol. Leflunomide (Arava) can increase blood pressure.

Biologics and statins  may have a beneficial effect on the lining of our blood vessels. 

                               There are things we can do! Let’s do them. 

Sleep tips by Behnam Kian, RN

I had insomnia for such a long time. However, with the help of professionals, I now have good sleep.  Here is what I've been doing for a better sleep, I hope this helps.

• I don't drink coffee after 10 AM (I can be naughty sometimes).
• I make sure to do a fast walk at least every second day 30-45 mins.
• Have my dinner by 6:30 (very unusual for a man from the Middle East).
• Put my blue light blocking glasses after 7pm if I want to work with my laptop.
• I would have a herbal tea called Sleepy Time (ingredients: chamomile, lime blossom, hops, lemon balm and passion flower).
• If I'm stressed for any reason I would make sure to do stretching before bed (it's very beneficial for me).
• I would take immediate release of Melatonin 30 mins before bed (only on medical advice), not often mainly when I do various nursing duties.
• I have removed the bedside clock from my bedroom forever.
• I have a hot shower/bath as part of my evening routine.

A great doctor once told me that; "You should go to bed only for two reasons sex and sleep, nothing else"  😊
Photo of me in the blue light cancelling glasses!

Safe and Happy Dreams!

Dragons join Johnson & Johnson leaders in Reconciliation Week

l-r: Susan Hughes, Dragon Claw Charity, Don Palmer, Malpa.org, Lynda Holden, Proud Dunghutti woman, Director of Board, Dragon Claw Charity, Maeve Eilki, Senior Manager, Communications & Public Affairs, Janssen Aust., Kris Ashpole, Head of Global Community Impact, Johnson & Johnson Australia and New Zealand. This was held at Janssen’s base on Eora Land.

Together being braver with more impactful action
By Susan Hughes

During Reconciliation week we had the privilege of accompanying Dragon Claw’s Board Director, Aboriginal Elder Aunty Lynda Holden, proud Dunghutti woman to the Johnson & Johnson Australia’s launch of its 3rd Reconciliation Action Plan.

Pastor Ray Minniecon, a descendant of the Kabi Kabi and Gurang Gurang nations gave an address discussing his views on reconciliation. Pastor Ray proudly said that Australia was the only country in the world to have Reconciliation Action Plans.

“This process is one of the most important things for not only the bottom line but for the world.  We are already scoping it out, stretching and elevating. We need leaders that can rise on inclusion and equity issues – RISE being Reflect, Innovate, Stretch and Elevate.  Aboriginals want to have a relationship with fellow Australians more than anything else …then we can walk and work together.” he said.

A discussion panel was facilitated by Johnson & Johnson’s Head of Global Community Impact for Australia and New Zealand, Kris Ashpole and guests included Kristal Kinsela, recognised by the Financial Review as one of Australia’s top 100 Women of Influence and Jonathan Lindsay-Tjapaltjarri Hermawan, Chief Operations Officer for Red Dust . On the issue of reconciliation Jonathan said “there is no such thing as a tick-a-box exercise, it is more an ongoing journey with challenges". He asks if we can intellectually assimilate and that “Aboriginal culture is already there”.

Johnson & Johnson’s Kris Ashpole talked about reconciliation covering race relations, equality, institutional equality and integrity. She said that “unity will come with historical acceptance, truth and treaty …and that Johnson & Johnson supports the Uluru Statement from the Heart” 

See:  Uluru Statement from the Heart

Finally, we had the opportunity of meeting Janssen’s (Johnson and Johnson’s pharmaceutical arm) new Managing Director Dr. Biljana Naumovic, who eloquently shared her insights on differing cultures based on her experience in Eastern and Western Europe and as a young cultural research student in Africa. Dr. Naumovic, concluded by saying “we need to be intentional about our work on equity of health”.

Dragon Claw’s Board Director, Aunty Lynda Holden said “ It shows that Non-Aboriginal people really want to work with Aboriginal people and they are walking the walk with them and as Pastor Ray says we can walk and talk together.”

Functional Nutrition

by Charlotte Hill

NUTRITION FOR CARDIOVASCULAR HEALTH

Nutrition alongside other lifestyle factors such as sleep and stress management play a critical role in the aetiology and management of cardiovascular disease. A reminder of why food is so important:

1. The food we eat provides the nutrients to build our whole body - every cell, every blood vessel and much more. The quality of the foods we eat will impact the structure of of all of the cells which then has a knock on impact on the function.
2. Food provides the fuel for all organs of our body - good quality sources of fat are the preferred source of fuel for the heart.
3. Foods we eat can be anti-inflammatory or inflammatory - cardiovascular disease has a strong link to inflammation. 

With this in mind I wanted to share my top food tips in relation to cardiovascular health:

1. REMOVE PROCESSED FOODS  - Processed foods are often full of preservatives, additives, sugar, poor quality fats, refined grains, added salt - most of it all are inflammatory for our bodies, send our blood sugar levels soaring are not nutrient devoid not nutrient dense. Start by checking the ingredient label of foods you are currently eating and then investigating alternatives if need be.
2. EAT NUTRIENT DENSE FOODS - Eat more whole food nutrient dense foods focusing on the following:
   • Good sources of protein - pasture raised poultry and eggs (especially the yokes), grass fed and finished beef / lamb, organ meats e.g. liver, wild caught fish.
   • Whole foods carbohydrates mostly from vegetables - leafy green vegetables, with a diversity of colour e.g. beetroot, red cabbage, pumpkin and some higher glycaemic root vegetables.
   • Quality not processed fats - see below.
3. EAT GOOD QUALITY SOURCES OF FAT AND AVOID INDUSTRIAL SEED OILS - What fats to eat has become very confusing over the last 50 years. Unfortunately many fats are highly processed, are high in omega 6’s and lead to inflammation in our bodies. These need to be avoided and examples include: industrial seed oils like sunflower, canola, rapeseed, soy, cottonseed and soy.  However, fats are still crucial to our diet as they are needed for all cells in the body, as fuel for our heart and to help manage inflammation. The fats to focus on are:  organic cold-pressed extra-virgin olive oil and coconut oil, nuts and seeds, olives, wild fatty fish, avocados, grass fed meats, a little bit of grass fed butter, and ghee. More information can be found HERE

Here is a simple heart healthy recipe for you all to enjoy.
Roasted salmon with sweet potato mash and salad of roasted greens — Charlotte Hill Chill + Nourish (chillandnourish.com)

www.chillandnourish.com

 COVID Update by Nurse Jill

The following is based on my research sourced from the official Australian Government Covid-19 site, the official World Health Organisation site, Our World In Data - Statistics and Research site and 'Post Script' ABC News site.

Another month and a multitude of changes to our Pandemic status! It would seem that the Delta Variant from India has become one of greatest concern and has been described as the 'dominant global variant'. Which means, the original Wuhan Virus is almost nowhere to be found now and the 11 new variants named by the WHO are far more transmissible and dangerous.

Variants Of Concern:

• Alpha - UK
• Beta - South Africa
• Gamma - Brazil Delta - India  

Variants of Interest:

• Epsilon - USA
• Zeta - Brazil
• Eta - Multiple Countries
• Theta - Philippines
• Iota - USA Kappa - India
• Lambda - Peru

Also in the last month are many changes to our vaccine status. So now poor AstraZeneca has been relegated to the "over 60's" and "not fit for purpose" for anyone younger. In Australia we have had 60 cases of TTS (Thrombosis with Thrombocytopenia Syndrome) or in Canada, VITT (Vaccine Induced Thrombotic Thrombocytopenia), 15 of which required Intensive Care and 2 of which sadly died. However, the latest advice for those of us who have had the first dose without any complication (including myself), is to go ahead and have the second dose after the appropriate time interval.

Also, as a nation, we are assured that our vaccination details are

1. Given to each recipient at the time of vaccination.
2. Recorded at vaccination site by health professional.
3. Recorded at the AIR (Australian Immunisation Register).

Recently we have secured 25 million doses of Moderna to be approved by the TGA and which hopefully will arrive by the end of the year. 10 million doses for the "ancestral virus" and 15 million upgraded doses for ongoing boosters.

Then, of course, is the Pfizer story, the "hottest property" in the world at the moment. Apart from the 20 million originally promised, the government has acquired another 20 million, though no one knows when they will arrive. So now the Pfizer vaccine has been approved for people 16 to 60 years old, although there seems to be a slight problem with supply as the age demographic has grown.

The next greatest cause for concern is our vaccine "rollout". Due to intermittent confusion, some important and vulnerable demographics have been missed along the way, aged care facilities, nurses and care workers, quarantine workers etc. Despite a slow start, Australia is slowly picking up pace.  Lets look at the facts: numbers of people vaccinated in other countries

• USA - 317.12 million, 94.82 per 100 people
• UK - 73.77 million  -  108.66 per 100 people
• Germany - 65.74 million  -  78.46 per 100 people
• Canada - 31.84 million  -  84.35 per 100 people
• Australia - 6.49 million  -  25.46 per 100 people  

And so I ask, what is happening here? Naturally there is some vaccine hesitancy due to the concerns regarding AZ. Is there really a supply problem? Or is the problem that we had no large vaccine hubs until recently. Curiously though, what has been at the front of my mind in the last month, is that for decades we have had vaccines for a multitude of diseases, without much thought to statistics or adverse effects. In fact we have insisted that our children have these vaccines and proudly Australia has one of the highest coverage of vaccinated children (5 years of age) at 95.22%. And so, with the most horrendous disease of our lifetimes (3,875,609 deaths in 19 months), we must continue to have vaccines, wear masks as required, observe social distancing and record our movements with QR codes (to assist contact tracing).

Post Script: Exciting News reported on ABC 20/06/2021.

The Victorian Government has announced, in partnership with the Monash University Institute of Pharmaceutical Sciences and the Doherty Institute, the development of both a new mRNA Vaccine and a Protein Vaccine, with linked Phase 1 Clinical Trials starting October/November this year. About 150 people will be involved in the clinical trials, with preliminary results expected to be available in the first half of 2022. During the clinical trial process, upskilling and specialised laboratories will be organised. 

    Note:

ABC publication has advised that the next Pfizer shipment will not be until August/September.   

Recommendations for Canada (from Dr Charmaine)

As of June 17, these are the NACI (National Advisory Committee on Immunization) Canadian recommendations.

For first doses, NACI recommends that:

• An mRNA vaccine (Pfizer-BioNTech, Moderna) is preferred to start a vaccine series, unless there is a contraindication, for example, because of an allergy to an mRNA vaccine or its components.
• A viral vector vaccine (AstraZeneca, Janssen) may be offered to start a vaccine series when an mRNA vaccine is inaccessible or contraindicated, for example, because of an allergy to an mRNA vaccine or its components.

NACI's previous recommendation - that people who wanted earlier vaccination could receive a viral vector vaccine rather than wait for an mRNA vaccine - reflected the limited supply of mRNA vaccines at the time and the imperative of protecting vulnerable populations from serious illness and death from COVID-19.

For second doses, NACI recommends that:

• Individuals who received a first dose of an mRNA vaccine (Pfizer-BioNTech, Moderna) should be offered the same mRNA product for their second dose. If the same product is not readily available, or the product used for the first dose is unknown, another mRNA vaccine is considered interchangeable and should be used to complete the series.
• An mRNA vaccine is now preferred as the second dose for individuals who received a first dose of the AstraZeneca/COVISHIELD vaccine, based on emerging evidence of a potentially better immune response from this mixed vaccine schedule and to mitigate the potential risk of VITT associated with viral vector vaccines.
• People who received two doses of AstraZeneca/COVISHIELD vaccine can rest assured that the vaccine provides good protection against infection and very good protection against severe disease and hospitalization.

Receiving a second vaccine dose for a two-dose schedule is essential to provide better and longer-term protection against COVID-19 for individuals and for the entire community.

Contact  National (Australia) Help Line

Our friends at Musculoskeletal Australia provide a contact free national Help Line! 

Do you have questions about dealing with pain, your musculoskeletal condition/s, treatment options, COVID-19, or accessing services? Then be sure to call their nurses on their free Help Line. They’re available weekdays between 9am-5pm on 1800 263 265.  

Alternatively feel free to drop a line to our patient volunteers with your phone number and we are happy to give you a call by appointment This email address is being protected from spambots. You need JavaScript enabled to view it..

Here is MsK’s newsletter MSK News

Our tentative (always open to change!) schedule for DragonTalks

July 2021

Please share with anyone with an autoimmune condition who might benefit from a safe space to share and learn.

 Please contact Charmaine This email address is being protected from spambots. You need JavaScript enabled to view it. for the zoom link or if you see a session of particular interest, and would like a link to a taped session.

Tuesdays North America 8 pm ET
Wednesdays Australia 10 am AET

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