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Archive for September, 2023

Facing the reality of scleroderma brings up difficult emotions

Posted in Blogs, Books & Music, Health & Wellbeing, tagged , , , , on September 12, 2023| 4 Comments »

The following post entitled “Facing the reality of scleroderma brings up difficult emotions” was written by Amy Gietzen for Scleroderma News.*

She writes;

“A year is a long time to feel hopeless. Throughout my life, I have endured. I’ve taken my licks and kept moving in a positive direction. Even after I was diagnosed with scleroderma at the young age of 19, I remained blindly optimistic, no matter the potential outcome of my disease. Sometimes, though, this optimism came at the expense of my emotional well-being.

Lately, I’ve seen a change in myself. I’ve kept hope alive for so long, believing that if I fight long and hard enough, I’ll make it through anything. But the health challenges I’ve faced over the past few months have opened my eyes to the reality of my situation. No matter how many positive vibes I project or how strong my will to live is, scleroderma will eventually consume my body and end my life. There isn’t a single thing I can do to prevent the inevitable.

I used to think that at some point, my disease would get sick and tired of pestering me and go away, or at the very least become dormant. I was convinced of that for so long. Now, 22 years after my diagnosis, I see why that mindset was naive.

Living in the present

Facing the reality that scleroderma will take my life at some point has instilled in me the need to be present for every experience. If death is the ultimate endgame, then I get to
decide how I’ll enter the pearly gates.

As this disease has slowly consumed my ability to function independently, I’ve thought a lot about what my life will look like moving forward. In the end, I came to the conclusion that I wanted to fight, go out swinging for the fences, and make every single breathable moment memorable. I’d take mental snapshots of every experience so I’d never forget it. I wanted to be able to come back to those memories at any time, knowing I experienced life in its totality.

For years, the snapshot idea worked, and it got me through some pretty dark and heinous times. Lately, though, nothing I do seems to give me peace. I’m constantly battling my body and mind. At first, I thought it was depression, but as time went on, I realized it wasn’t. I knew deep down that all of the emotions I’d bottled up during my 22 years with scleroderma were bubbling to the surface, and this time, no amount of seeing the bright side or making memories could hold them at bay.

Being honest about my reality

I feel lost and consumed with anger at the direction my life has taken, but because I’ve always maintained a positive outlook, I can’t seem to shake the hope that there’s light at the end of my tunnel.

So which feelings are appropriate?

No one really knows. Just as I can’t tell other people living with an illness how to think or feel, they can’t advise me in the same respect.

I think the best way to push through is to be honest about how you feel and where you’re at in your disease journey.

There’s no right or wrong way to handle the toll of scleroderma. All anyone can do is try to be open with their feelings. For me, taking each day as it comes helps me not to feel so overwhelmed or bogged down by the emotional weight of my physical deficits. Focusing on the day at hand helps me battle unwanted feelings of hopelessness. As for today, it’s the best I can do, and I’m at peace with that — for now.

Amy Gietzen resides in Buffalo, New York, with her amazingly supportive family, friends, and three cats. She’s a patient advocate, the creator of the young adult virtual support group SYNC, and a public speaker who travels across the United States educating students and medical professionals about scleroderma.

Amy was diagnosed with systemic scleroderma in 2001 at 19 years old. She’s also developed idiopathic pulmonary fibrosis, pulmonary hypertension, and major heart rhythm issues.

* Scleroderma News is a digital platform intended to provide the scleroderma community with the most recent news and information on the disease, as well as first-hand community perspectives from their patient and caregiver columnists.

Blessings ’til next time 🙂

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Māori Language Week 2023

Posted in In the News, tagged , , on September 9, 2023| Leave a Comment »

Māori language week – Te Wiki o te reo Māori (2023) starts on Monday and is an annual celebration held in September.

It is an opportunity for the concentrated celebration, promotion and encouragement of all things Māori.

You see, just saying a simple ‘Kia ora!’ contributes to revitalising the Māori language, and Te Wiki o te reo Māori is becoming a major fixture on the national calendar here in New Zealand.

Kiwis home and abroad are encouraged to learn and embrace the language, and also share and experience the rich culture of their country.

So, how can you and I observe Māori language week;

1. We can each make an effort to learn some new Māori words before the end of the week.

You could label some furniture or items in and around your house, and even name the rooms of your home in Māori i.e. rūma kaukau is bathroom, you may be able to find a tāora there and some whēru if it has a whare paku.

To make it more fun, you could get a friend to join you in learning. This way you can practice communicating in te reo (the language).

2. Many of us try to pronouncing Māori words without taking the time to learn how to pronounce them correctly.

So, if you’re not sure how to pronounce a word correctly ask a friend who speaks te reo Māori or look it up online.

Te Aka is a helpful online Māori dictionary and includes audio of individual words that can help you do this.

3. Alternatively, you may want to watch a television show in Māori. There is a dedicated channel for this here in Aotearoa (New Zealand) – Whakaata Māori (formerly known as Māori Television), promotes, revitalises and normalises the Māori language by taking a digital-first, audience-led approach in the delivery of educational, entertaining and engaging programming.

They have a wide range of programmes including shows for; kai (food), kapa haka (Māori performing arts), and our tamariki (children). 

Last year, Te Ope Whakaora (The Salvation Army) released an app called Te Kākano. This app has been developed to help people build their confidence, knowledge and capability to work effectively with Māori in whatever role they are in within Te Ope Whakaora!

It is an amazing app – creative, innovative, and easy to use!

There’s an incredible range of resources available to help you on your journey; from pronunciation to waiata, to pepeha and information around tikanga and practices. 

You can check it out or download it today by following the below links to find out how it may be of benefit to you and enhance your ministry in your local setting!

Apple devices – App Store

Android devices – Google Play Store

 

For a variety of other ideas and resources check out the Te Rangaihi Reo Māori – Hautau (Ideas) page, you’ll find a range of things that can help you learn how to:

Whakarongo | Listen
Kōrero | Speak
Ako | Learn
Tākaro | Play
Pānui | Read
Waiata | Sing

Turou hawaiki (may the force be with you / blessings upon you) ’til next time 🙂

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At a bit of a loss

Posted in Blogs, Books & Music, Health & Wellbeing, tagged , , , , , , , , , on September 7, 2023| 2 Comments »

If you have been following my blog over the past year you or so, you will have noticed that every now and then I share poems by John Roedel.*

I’ve been following his Hey God. Hey John. facebook page for a while and every now and again I post some of the conversations with God that John shares.

Mainly because they resonate with me on a number of levels, and I find them so relevant to my own journey of life, ministry and faith.

Scleroderma has certainly made me rethink / deconstruct aspects of my life as I deal with the myriad of symptoms that crop up from time to time as I experience life living with a rare and incurable autoimmune disease.

I find myself as I prepare this post, having to take additional pain killers throughout the day, as the aches and pains throughout my body have been steadily increasing over the past couple of days, especially in my middle back 😦 This definitely doesn’t help with the fatigue that I’m constantly dealing with either.

The thing is, at the moment there are times when I can feel at a bit of a loss.

The path before me is uncertain. I am unsure if the decisions that I’ve made are going to be beneficial to me or not. The way forward is unclear. The challenges seem almost insurmountable.

Then other doubts and fears creep in, and any number of questions arise.

But in all of this, I have to trust; Trust in God, Trust in myself, and Trust in others. For according to Psalm 16:11 “He will show me the path of life, in His presence is fullness of joy, at His right hand are pleasures forevermore.”
(New King James Version)

The trusting in others can at times be extremely challenging, especially if they have let you down in the past, or aren’t prepared to listen to what you are saying. How many of you with Chronic Illnesses can relate to that? You share how you are feeling to the doctor, or specialist and you get the sense that they just wanna move on to the next patient. And that is just one example of many that I’m sure we could all relay.  

Trusting in myself can also be a challenge, as there are often instances when I was able to do something the other day, only to find that today I just simply can’t manage, at times, the simplest of tasks. This can lead to anger at oneself and frustration 😦

Then the big one, or at least for a number of people, trusting in God – I mean if He was a loving God and all, why would He even allow me to go through this 😦 Surely it is not what He had planned for me and my life? 

Yet for me, if you wipe away everything else, others and even myself – this is the one thing that I hold on to; that God is with me, supporting me and guiding me. Through the good times and the bad, through the ups and downs, holding my hand and helping me navigate the wilderness.      

Now, I am in no way suggesting that the journey is going to be easy, in fact there are times when it is anything but – However, having someone to walk it with you makes one heck of a difference. Or at least it does in my life 🙂

John writes;

Me: Hey God.
God: Hello, My love!

Me: Okay, that’s it! I officially don’t know where I’m going. I’m totally lost.
God: Don’t worry. All will be well. Take My hand.

Me: Your hand? You bet! Are you going to help me figure out which way I need to be going?
God: Nah. Right now I want you to enjoy your journey.

Me: I’m not on a journey! I’m lost! There’s a difference!
God: Not always. Being a bit lost can be a remarkable adventure.

Me: I’m sure – but I think I just want You to bring back me to some sort of recognizable path. I hate not knowing where I’m going.

God: Relax. Sometimes being lost will let you find graces in places that you’d never thought you would see. Sometimes being lost will introduce you to amazing people that you would have never met had you been on the beaten path. Sometimes you need to be lost for a while in order to come to know yourself. Sometimes being lost will help you be a witness to miracles that you would have missed. I’m telling you that sometimes being lost can be the best thing ever to happen to you.

Me: If you aren’t going to lead me out of the wilderness, why do you want me to hold Your hand?
God: To show you that you’re not alone. Just because your lost doesn’t mean that you are on your own. I am on this journey with you. I’m right with you.

Me: I’m scared.
God: Lace your fingers with Mine and nothing will harm you. 

LET’S WANDER TOGETHER!

Me: Which way should I go?
God: You pick. Any way you go I will be with you. Any way you go –

Me: You will have something beautiful to show me?
God: You’re getting good at this!

You may also be interested in reading the following:

Blessings ’til next time 🙂

* John Roedel is a comic, husband and father of three boys based in Wyoming who began talking with “God” in 2015 on Facebook about his ongoing faith crisis.

What began as a flippant way of making light of his doubts in the Divine turned into something he wasn’t at all prepared for:

God wrote back.

Since creating the popular “Hey God. Hey John.” Facebook page three years ago, John has tackled such topics as his journey to mental health wellness, his lack of faith, the joy and pain of raising a child with autism, and grief, all in the form of a simple conversation with God.

You can pick up a copy of John’s latest book ‘Fitting in is for Sardines’, a collection of his poetry that focuses on the courage it takes to be who we were born to be. It celebrates how perfectly strange we were all created to be. Different is beautiful!! from Amazon (Australia) here.

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Medicines crisis declared in NZ

Posted in Health & Wellbeing, In the News, tagged , , , , , , , , on September 5, 2023| 1 Comment »

The below article appeared on sunlive – The Bay’s News on Sunday entitled ‘Medicines crisis declared in NZ‘.

A campaign is underway to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.

MyLifeMatters, a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions have this week launched the campaign.

“Kiwis are one diagnosis away from having to move to Australia to access medicines that are publicly funded elsewhere in the OECD. We are in a crisis and our politicians need to act,” says Patient Voice Aotearoa chair Malcolm Mulholland.

“Medicines are a core part of the backbone of healthcare, enabling patients to lead healthy and productive lives, however New Zealand remains at the bottom of the OECD without access to many medicines that are already part of standard international treatment regimes.”

Malcolm says New Zealanders’ ability to access new and breakthrough medicines lags well behind other comparable OECD countries, with New Zealand dead last, ranking 32nd in a list of 32 OECD countries for public funding of medicines.

The recent Medicines Landscape 2022/23 report is a stark reminder of just how big this issue is.

In April 2023, there were 109 applications waiting for funding on Pharmac’s Options for Investment List, with many medicines languishing for an average wait time of 7.7 years and longer.

“Compounding these concerns is the investment hole in the health budget that demonstrates the Government’s lack of commitment to reducing time to access new and breakthrough medicines as early as possible,” says Malcolm.

“The additional funding provided to Pharmac by the Government to fund new medicines or widen access was only provided for in the 2022/23 and 2023/24 years.

“To maintain access the same list of funded medicines, an additional $181 million dollars is needed, and this does not include funding for any new medicines.”

Malcolm says this could mean no new medicines will be funded until there is a commitment from Government to do so.

“The Treasury has already warned the Government twice in the Budget Economic and Fiscal Update (BEFU) about the funding which is missing from the health budget from 2024 onwards.”

The issues MyLifeMatters are highlighting they say need to be addressed are:

  • Timely access to new and breakthrough medicines
  • Patient-focused wellbeing benefits to be included in decision-making processes

“New Zealand’s Government must expedite pathways for evaluating and approving these treatments which can significantly improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system,” says Malcolm.

He says this is to improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system.

“Pharmac plays a pivotal role in the management of medicines access, with decisions primarily driven by costs and little consideration given to societal factors.”

He says there also needs to be an urgent and clear plan to implement the findings of the Pharmac Review to address the significant shortcomings in Pharmac’s performance.

“Many Kiwis are struggling to privately fund the medications they need, forced to leave New Zealand, or go without the treatment they desperately need.

“This burden is particularly hard on vulnerable communities, leading to adverse health outcomes, and reduced quality of life.”

Theresa Zame is a stage-four lung cancer patient who is self-funding her medicine that she needs for a productive, better quality of life.

“Our most vulnerable are suffering and dying prematurely, and the Government needs to both stop being so cost-focused around medicines, and also better value patient’s wellbeing and their families welfare,” says Theresa.

“If the rest of the OECD can do it, so can we.”

As the collective group MyLifeMatters is calling for timely access to new and breakthrough medicines.

“New Zealand’s Government must expedite pathways for evaluating and approving these treatments which can significantly improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system,” says Malcolm.

MyLifeMatters says there needs to be an increased investment and timely access to medicines to cater to the growing healthcare needs of the New Zealand population, and to keep up with the rest of the OECD.

The group is also calling for patient-focused wellbeing benefits to be included in decision-making processes on medicines investment by the New Zealand Government.

“Together, MyLifeMatters believes it’s possible to shape a future where all Kiwis have timely and equitable access to medicines as early as possible, politicians must act now,” says Malcolm.

The mission of MyLifeMatters is to raise awareness, promote policy changes, and engage politicians to ensure that there is equitable access to essential medicines for all Kiwis.

At the heart of there campaign lies a shared vision: everyone in New Zealand should have access to affordable and essential medicines.

I for one know the stress and burden caused through having to fund my own medications for Scleroderma with associated Interstitial Lung Disease (Scl-ILD), as we have to self fund Rituximab.

Rituximab unfortunately is not a funded treatment option for my condition, even though it can be used for other autoimmune diseases and disorders that have similar symptoms as mine 😦

We’ve had to go down this path as the regular funded treatment was proving to be ineffective in keeping my symptoms in check. We have since had to increase the occurrence of this additional medical regime on a four monthly basis to help with my situation. Which initially could have cost us approximately $50,000+ per year.

Thankfully our chemist found a biosimilar medication in Riximyo which will do the job just as well. However, this still equates to about $12,000 per year. We are extremely grateful for the assistance that my workplace provides through a health provision in helping to cover the lion’s share of this expense.

Tragically though over time this medicine has the potential to become ineffective as well and a medication that has been specifically designed to assist those with Scl-ILD in the US, is not funded currently within NZ, and would cost approximately $80,000 (at this stage).

It is currently on the Pharmac Funding Priority List but as noted above the average wait time could be anywhere between another 5 years or more before it is approved, if it is approved. Let’s just hope and pray that my condition doesn’t progress any further.

You can keep up to date with my health condition here.

Rare Disorders NZ (RDNZ) is currently working with Manatū Hauora on the development of a national rare disorder strategy, which they’ve long been calling for to ensure the health system recognises, and equitably meets the needs of, the 300,000 New Zealanders living with a rare disorder.

Find out more about the strategy here.

However, RDNZ are alarmed that despite Manatū Hauora working for the past year on this, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper [‘Achieving Pae Ora Through Primary Care’] on the Minister of Health’s vision for primary and community healthcare in Aotearoa. For more information about this concern read this article.

The following article was also written for the New Zealand Herald which may be of interest to many in the Rare Disease Community – MyLifeMatters calls for new medicines, urgent Pharmac investment

Blessings ’til next time 🙂

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The Father’s Love Letter

Posted in Blogs, Books & Music, Devotional, The Word, tagged , , , , , , , on September 1, 2023| Leave a Comment »

This weekend in New Zealand we celebrate Father’s Day. It is a special day to recognise and celebrate the role that fathers play in our lives. Whether it’s your Dad, step-Dad, foster Dad or just a special father figure who has helped you along the way, Father’s Day NZ is your chance to say ‘Thank You’.

The history of Father’s Day dates back to the early 1900s, and was partly inspired by the unofficial Mother’s Day services and events that began in 1908.

These services and events prompted many people to arrange similar celebrations to recognise fathers, the most widely noted was organised in Washington, (United States of America) by Mrs Sonora Dodd.

Mrs Dodd wanted to pay tribute to her late father, William Smart, who became a single parent when her mother died in childbirth, he raised 6 children on his own, which was an unusual feat at that time.

Originally she wanted to hold a memorial service on the anniversary of her father’s death, June 5th 1910. However, this did not leave organisers enough time to prepare, instead the service was arranged to be held on the June 19th and became known as the first Father’s Day.

While services continued every year, it wasn’t until 1924 that American President Coolidge recommended that Father’s Day be recognised as a national holiday. It took a further 48 years for Father’s Day to become officially recognised by American President Nixon in 1972.

Most countries follow the American tradition and celebrate Father’s Day on the 3rd Sunday in June. However, New Zealand and Australia celebrate Father’s Day on the 1st Sunday in September.

This year, I’d like to take the opportunity to remind us each of the love that our Father in Heaven has for every one of us. The Apostle John asks that we;

“Think how much the Father loves us. [As] He loves us so much that he lets us be called his children, as we truly are…” 1 John 3:1a (Contemporary English Version)

In The Voice Bible it says to; “Consider the kind of extravagant love the Father has lavished on us – He calls us children of God! … … we have been adopted into God’s family” 1 John 3:1-2 (The Voice)

The Voice Bible also notes that “when we feel like we are not good enough to be loved by God, we should remember that God’s love is greater than our doubts. We must silence the sounds of condemnation so we can hear the voice of God’s loving assurance and remember that He has selected us to be part of His family.“

What an awesome privilege and inheritance!

Through His Word, God has an intimate message for each and every one of us.

The Father’s Love Letter is an intimate message from God to You!

It is a compilation of Bible verses from both the Old & New Testaments that are presented in the form of a love letter from God to you.

​Each line in the Father’s Love Letter message is paraphrased, which means that the author, Barry Adams, has taken each Scripture’s overall message and summarized it as a single phrase to best express it’s meaning.

 

You can read about Barry’s story on how he came to develop the love letter from God, and what his vision to share God’s love around the world both now and into the future is.

At Fathers Love Letter they have many free resources in over 100 languages that may help people you know grow in their relationship with God. Including a FREE e-book Devotional Book!

You’re welcome to download this book and share it with others. Along with any of the other resources available, which include: videos, audio files, various texts, and devotional thoughts that were originally sent out via email to thousands of people who were interested in growing in their relationship with their Heavenly Father.

Barry hopes that they will be a blessing to you and to those that you pass them on to, as you each journey home to God’s ultimate love!

In closing I’d like to share the words of “How Deep The Father’s Love For Us” (SASB #32), which is a modern Christian hymn written by Stuart Townend.

The hymn’s lyrics praise and admire the love of God, the Father and the sacrifice made by Jesus Christ:

How deep the Father’s love for usHow vast beyond all measureThat He should give His only SonTo make a wretch His treasureHow great the pain of searing lossThe Father turns His face awayAs wounds which mar the Chosen OneBring many sons to glory

 
Behold the man upon a crossMy sin upon His shouldersAshamed, I hear my mocking voiceCall out among the scoffers
 
It was my sin that held Him thereUntil it was accomplishedHis dying breath has brought me lifeI know that it is finished
 
 
I will not boast in anythingNo gifts, no power, no wisdomBut I will boast in Jesus ChristHis death and resurrectionWhy should I gain from His reward?I cannot give an answerBut this I know with all my heartHis wounds have paid my ransom

The below rendition is from the Messiah College Brass Quintet in 2010, performing Joel Brandon’s arrangement of “How Deep the Father’s Love for Us.”

Blessings ’til next time 🙂

 

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