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Archive for September, 2023

Word of Encouragement – Don’t Settle for the status quo

Posted in Devotional, The Word, tagged , , , , , on September 28, 2023| Leave a Comment »

Don’t settle for the status quo.

Today’s Word of Encouragement comes from a good friend of mine and colleague Hamish Thomson, who is the pastor of Abundant Life Church here in Wellington.

It was written earlier this year and I’ve had it sitting in my saved items for such a time as this, as I get a sense that many of us have become somewhat lethargic in our day to day.

Maybe it is just me as I continue to grapple from time to time with fatigue due to my health condition, and the feeling that my get up and go has somehow got up and gone.

But it is almost as if the long hard dark winter here in Aotearoa, New Zealand and the volatile start to spring with its changeable weather has had an effect on each and every one of us.

Couple this with the after affects of covid lockdowns, constant talk of a recession, the cost of living crisis, effects of climate change right on our doorsteps, constant disruptions and changes on the horizon, political parties jostling for votes for the upcoming elections, rise in petty crime (which often isn’t really petty) and the list could go on and on.

And this is not just an issue here in ‘God’s Zone’ – as we look around the world it seems to be a recurring thing in our day and age, especially when you add in the likes of major migration issues, war (not war), conflicts, famine, wildfires raging, mass floods and devastating earthquakes etc. we can easily become rather blasé [blah-zey] about life.

Accepting it for what it is and thinking very little of what is going on in the world around us, setting for the status quo. We could feel as if we are stuck in a rut, constantly asking ourselves “is this all there is?” Have we arrived and settled in for the ‘long haul’?

Hamish writes; “Most of us a familiar with the story of Abraham and how, on a call from God, set out from his home country to Canaan. Often when I think of this I can’t help but compare Abraham to his father, Terah.

In Genesis 11:27-32 we read how Terah “set out to go to Canaan,” a land of plenty, a land the Bible describes as flowing with “milk and honey.” But he never made it! Along the way, he simply settled.

I get that traveling hundreds of kilometers across rough terrain with flocks, herds, children, and servants can’t have been easy. I can easily imagine how worn down Terah must have become by the constant “Are we there yet?” cries from everyone – to say nothing of having to set up tents every night, and pack them back up in the morning. So finally Terah decided he couldn’t go any farther, so he settled where they were comfortable.

I wonder, how many times do we do the same thing? We have a big dream; to excel in our careers, or as parents, or in our walk with Jesus. We get started, but things get difficult.

Along the way, life throws some curve balls. We hit some speed bumps. We are forced to take some unexpected turns and at some point achieving our goal doesn’t motivate us the way it once did.

Maybe like Abraham’s father, we say;
“Let’s just settle here. It’s not really what we wanted, but it’s good enough.”

Have you been there?

Don’t fall into that trap. You were made for more than ‘good enough.’ Don’t settle for a little love and joy, a portion of peace and contentment, or a small helping of happiness.
Pull up the stakes, pack your tent, and start moving forward! Enlarge your vision.

Follow the example of Abraham and keep going, trusting God to lead you and to provide for you. Don’t settle until you reach the end and hear the One who gave you life say: “Well done good and faithful servant, enter your rest.”

Maybe as we go about our day to day lives we need to be reminded to “Be strong and courageous. [To] not be afraid [or] discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9 (New International Version)

Blessings ’til next time 🙂

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Lung Disease Day’s

Posted in Health & Wellbeing, In the News, tagged , , , , , , , , , , , , on September 26, 2023| Leave a Comment »

Call it coincidence, or whatever you will – but over the course of my latest two rounds of Rituximab, I have ‘celebrated‘ significant lung disease day’s while hooked up to machines.

These machines [Intravenous (IV) infusion pumps] have been providing me with the much needed medication that I require to keep my SpO2 readings at a level that allows me to function normally, well at least breathe easier for the next 4 months or so 🙂

As I alluded to in my latest health update the day after the first round of my IV infusions of Rituximab was Interstitial Lung Disease (ILD) Day (13 September). 

ILD is the umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. The inflammation and scarring can injure the lungs, making it difficult to breathe and get oxygen to the bloodstream. Shortness of breath is a common symptom of ILD, along with dry persistent cough, fatigue and weakness, chest discomfort, “clubbing” of the fingertips, loss of appetite and unexplained weight loss.

Patients with some inflammatory and connective tissue diseases such as; rheumatoid arthritis, systemic sclerosis (scleroderma), sarcoidosis, etc. are at a higher risk of developing ILD.

Unfortunately, it is often progressive in nature, which means that the lung fibrosis gets worse over time.

This progression is variable, with some people experiencing slower but steady progression, while for others the disease develops more rapidly with worsening disease symptoms.

Initially the fibrosis in my lungs developed quite quickly over a short period of time, due to some active inflammation caused by the Scleroderma (apparently), before being brought under reasonable control by having Rituximab infusions every four months.

In effect I have a triple whammy thing going on, as not only is the Scleroderma and ILD a big enough risk, but the medications I have to take to control my condition also play havoc effectively knocking out the immune system.

This in effect makes me susceptible to picking up any kind of cold or flu and/or respiratory viruses, including Covid which is now classified as being endemic in the community. Meaning that I have to be extremely careful and vigilant when out and about as I’m unable to wear a mask 😦   

Anyhow, here I am sitting at Hutt Hospital Medical Day Stay Centre getting the second course of Rituximab and starting to put together this post when I get a Facebook notification advising me that it is World Lung Day.

This was established by The Forum of International Respiratory Societies (FIRS), raising awareness for those affected by lung diseases.

It is an opportunity for the global health community to promote better lung health, advocacy and action.

It’s also a chance for organizations from around the globe to discuss how they can better work together to help rid the world of all lung disease.

FIRS is calling on governments and healthcare providers worldwide to give equitable access to preventive services and treatments for respiratory conditions. 

The theme for this year’s World Lung Day is “Access to Prevention and Treatment for All. Leave No One Behind,” reflecting the commitment to equity that is at the heart of the 2030 Agenda for Sustainable Development. 

The challenge to respiratory health is evident!
There is a clear lack of equal access to preventive measures all around the world.

Here in Aotearoa (NZ) I am having to self-fund my medications as Rituximab (which is available here in NZ for other conditions) is not covered by Pharmac funding for my ‘rare‘ disease.  

This can be extremely frustrating, especially as this along with other medications that are readily available worldwide and have been specifically developed for ‘my‘ disease are not covered by Pharmac funding, even though it has been approved my MedSafe.

The thing is, I am not the only one! Anyone who has any kind of autoimmune, rare disease or disorder, or invisible disability often has an uphill challenge when seeking medical assistance for preventative medications in this country often touted as ‘God’s Zone’. 

MyLifeMatters says New Zealanders’ ability to get new and breakthrough medicines lags way behind other OECD countries, which is something I alluded to in this post.

Countless lives across New Zealand are tethered to hope, and their survival hinges on accessing new and breakthrough medicines that are publicly funded elsewhere in the OECD, but currently not here in ‘God’s Zone’.

They are calling for the NZ Government, which we get to decide in a month or so, to; 

  • Access new and breakthrough medicines in a timely way.
  • Provide an urgent and clear plan to implement the findings of the Pharmac Review to address the significant shortcomings in Pharmac’s performance, especially its role and funding.
  • Ease the financial burden on patients, especially the vulnerable communities.

Rare Disorders NZ are also concerned about these issues as; “People living with a rare disorder are estimated to make up 6% of New Zealand’s population, yet this large community experiences substantial unmet need and inequitable access to healthcare.

With over 7,000 known rare disorders, individually these disorders occur in very small numbers in the population, but collectively, rare disorders are estimated to affect 300,000 people in New Zealand.

This is, however, only an estimate based on international data, as no data is officially collected in New Zealand on rare disorders. This is because the classification system for diseases that New Zealand uses does not include most rare disorders.“

They have collectively identified seven strategic priorities to improve health and wellbeing for all people living with a rare disorder, which you can learn more about here.

In preparation for the upcoming elections they have asked each party where it stands with regard to these seven strategic priority areas to improve the overall health and wellbeing of those voters with rare disorders.
You can read more about it here.

In the meantime, we each need to remain careful and vigilant while out in the community, and in my case prioritise my lung care as it is especially crucial, as it can lead to further complications. Through regular monitoring and early intervention it can significantly enhance my lung function and quality of life.

The thing is, the importance of living well and adopting a healthy lifestyle including taking regular exercise, eating a balanced diet, managing stress, and staying positive cannot be emphasised enough.

For those of us with these concerns we should work in partnership with our specialists and GP’s to learn more about associated issues with our conditions and develop a plan of action to help us each to live well and manage the effects now and in the future.

We need to focus on the positive things that we can do in life in the here and now.

Being thankful for what we have, as in one moment our entire lives could be flipped on its head yet again, as another ailment threatens to derail us and leave us wondering what next.

Therefore, we need to manage the symptoms that we have as best as we can and maximise our physical, and mental health and well-being, keeping as active and fit as we can using a wide variety of ways which I’ll look at in a future post.

In the meantime you may like to check out the following;

The Importance of Thankfulness 
How Can We Develop Joy?
Where will you find joy?
Joy in the Hard Times 
Learn to Relax 

You can also link in with other patients and caregivers through Rare Disorders NZ support groups to learn from your peers and share experiences and tips for living well.

For those of you with Scleroderma you can connect with the Scleroderma New Zealand Inc. which has support groups in Hamilton, Palmerston North, Wellington (which I’m involved in currently), Christchurch and Southland.

I have found these times encouraging and uplifting. They also have a Scleroderma facebook page for people with scleroderma and their families and friends here.

Alternatively, you can connect with Scleroderma Support & Education NZ via Facebook.

Keep safe and stay healthy everyone.

Blessings ’til next time 🙂

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Grieving for My Old Life

Posted in Blogs, Books & Music, Health & Wellbeing, tagged , , , , , , on September 21, 2023| 1 Comment »

The following post was written by Angie Ebba* entitled ‘Grieving for My Old Life After a Chronic Illness Diagnosis‘.

It was part of a series looking at ‘The Other Side of Grief‘ on Healthline. 

Healthline is dedicated to making health and wellness information accessible, understandable, and actionable so that readers can make the best possible decisions about their health.

I’m sure most of us with Scleroderma can identify with the sentiments shared, irregardless of what gender we are. I may not have ever worn heels, however I have experienced moments where I have been overwhelmed by my emotions and become upset over trivial things that I would have previously not been too concerned about.  

The same can be said for anyone suffering from the myriad of other rare diseases or disorders, autoimmune diseases, chronic illnesses, or invisible disabilities – at some stage we are all faced with having to cope with aspects of grief for the things that we can no longer experience, whether that be participating in, or doing something, or even being somewhere.   

You see, what struck me specifically is that “in the years since getting sick and becoming disabled, I’ve learned that a whole range of emotions are just as much a part of my illness as my physical symptoms – nerve pain, stiff bones, aching joints, and headaches. These emotions accompany the inevitable changes in and around me while I live in this chronically ill body.

When you have a chronic illness, there’s no getting better or being cured. There’s part of your old self, your old body, that’s been lost.“

She goes on to explain aspects of grief that I’m sure we are all familiar with. Here’s her experience:

“I sat on my bedroom floor in front of the closet, legs tucked up under me and a big trash bag next to me.

I held a pair of simple black patent leather pumps, heels worn from use. I looked at the bag, already holding several pairs of heels, then back at the shoes in my hand, and began to cry.

Those heels held so many memories for me: standing me confident and tall as I was being sworn in as a probation officer in a courtroom in Alaska, dangling from my hand as I walked Seattle streets barefoot after a night out with friends, helping me strut across the stage during a dance performance.

But on that day, instead of slipping them on my feet for my next adventure, I was throwing them in a bag destined for Goodwill.

Just days before, I’d been given two diagnoses: fibromyalgia and chronic fatigue syndrome. Those were added to the list that’d been growing for several months.

Having those words on paper from a medical specialist made the situation all too real. I could no longer deny that there was something serious happening in my body. I couldn’t slip on my heels and convince myself that maybe this time I wouldn’t be crippled over in pain in less than an hour.

Now it was very real that I was dealing with chronic illness and would be doing so for the rest of my life. I wouldn’t wear heels again.

Those shoes that had been essential for activities I loved doing with my healthy body. Being a femme formed a cornerstone of my identity. It felt like I was throwing away my future plans and dreams.

I was frustrated at myself at being upset over something as seemingly trivial as shoes. Most of all, I was angry at my body for putting me in this position, and — as I saw it at that moment — for failing me.

This wasn’t the first time I’d been overwhelmed by emotions. And, as I’ve learned since that moment sitting on my floor four years ago, it definitely wouldn’t be my last.

In the years since getting sick and becoming disabled, I’ve learned that a whole range of emotions are just as much a part of my illness as my physical symptoms — nerve pain, stiff bones, aching joints, and headaches. These emotions accompany the inevitable changes in and around me while I live in this chronically ill body.

When you have a chronic illness, there’s no getting better or being cured. There’s part of your old self, your old body, that’s been lost.

I found myself going through a process of mourning and acceptance, sadness followed by empowerment. I wasn’t going to get better.

I needed to grieve for my old life, my healthy body, my past dreams that were no longer a fit for my reality.

Only with grieving was I going to slowly re-learn my body, myself, my life. I was going to grieve, accept, and then move forward.

Nonlinear stages of grief for my ever-changing body

When we think of the five stages of grief – denial, anger, bargaining, depression, acceptance – many of us think of the process we go through when someone we love passes away.

But when Dr. Elisabeth Kubler-Ross originally wrote about the stages of grief in her 1969 book “On Death and Dying,” it was actually based on her work with terminally ill patients, with people whose bodies and lives as they knew them had drastically changed.

Dr. Kubler-Ross stated that not only terminally ill patients go through these stages — anyone facing a particularly traumatic or life-altering event can. It makes sense, then, that those of us faced with chronic illness also grieve.

Grieving, as Kubler-Ross and many others have pointed out, is a nonlinear process. Instead, I think of it as a continuous spiral.

At any given point with my body I don’t know what stage of grieving I’m in, just that I’m in it, grappling with the feelings that come with this ever-changing body.

My experience with chronic illnesses is that new symptoms crop up or existing symptoms worsen with some regularity. And each time this happens, I go through the grieving process again.

After having some good days it’s really difficult when I relapse back into bad days. I’ll often find myself quietly crying in bed, plagued with self-doubt and feelings of worthlessness, or emailing people to cancel commitments, internally shouting angry sentiments at my body for not doing what I want it to.

I know now what’s going on when this happens, but in the beginning of my illness I didn’t realize I was grieving.

When my children would ask me to go for a walk and my body couldn’t even move off the couch, I’d get incredibly angry at myself, questioning what I’d done to warrant these debilitating conditions.

When I was curled up on the floor at 2 a.m. with pain shooting down my back, I’d bargain with my body: I’ll try those supplements my friend suggested, I’ll eliminate gluten from my diet, I’ll try yoga again… just please, make the pain stop.

When I had to give up major passions like dance performances, take time off from grad school, and leave my job, I questioned what was wrong with me that I could no longer keep up with even half of what I used to.

I was in denial for quite some time. Once I accepted that my body’s abilities were changing, questions began rising to the surface: What did these changes in my body mean for my life? For my career? For my relationships and my ability to be a friend, a lover, a mom? How did my new limitations change the way I viewed myself, my identity? Was I still femme without my heels? Was I still a teacher if I no longer had a classroom, or a dancer if I could no longer move like before?

So many of the things I thought were cornerstones of my identity — my career, my hobbies, my relationships — drastically shifted and changed, causing me to question who I really was.

It was only through a lot of personal work, with the help of counselors, life coaches, friends, family, and my trusted journal, that I realized I was grieving. That realization allowed me to slowly move through the anger and sadness and into acceptance.

Replacing heels with butterfly sandals and a sparkly cane

Acceptance doesn’t mean that I don’t experience all the other feelings, or that the process is easier. But it does mean letting go of the things I think my body should be or do and embracing it instead for what it is now, brokenness and all.

It means knowing that this version of my body is just as good as any other previous, more able-bodied version.

Acceptance means doing the things I need to do to take care of this new body and the new ways it moves through the world. It means setting aside shame and internalized ableism and buying myself a sparkly purple cane so I can go on short hikes with my child again.

Acceptance means getting rid of all the heels in my closet and instead buying myself a pair of adorable flats.

When I first got sick, I feared I’d lost who I was. But through grieving and acceptance, I’ve learned that these changes to our bodies don’t change who we are. They don’t change our identity.

Rather, they give us the opportunity to learn new ways to experience and express those parts of ourselves.

I’m still a teacher. My online classroom fills with other sick and disabled people like me to write about our bodies.

I’m still a dancer. My walker and I move with grace across stages.

I’m still a mother. A lover. A friend.

And my closet? It’s still full of shoes: maroon velvet boots, black ballet slippers, and butterfly sandals, all waiting for our next adventure.

I hope that you have found this beneficial for whatever challenges you are facing in life.

There are days when I get frustrated that I can’t do simple things in and around the home that I used to and I’ve been living in a state of denial around needing to utilise a range of disability aids to help me.

I also struggle with the whole idea of acceptance – but I am getting better – slowly! It all takes time.

Blessings ’til next time 🙂   

* Angie Ebba is a queer disabled artist who teaches writing workshops and performs nationwide. Angie believes in the power of art, writing, and performance to help us gain a better understanding of ourselves, build community, and make change. You can find Angie on her website, her blog, or Facebook.

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Five Ways to Wellbeing

Posted in Health & Wellbeing, tagged , , , , , on September 19, 2023| Leave a Comment »

Mental Health Awareness Week (MHAW) here in Aotearoa (New Zealand) kicked off yesterday with this years theme focussing on; Five Ways, Five Days.

In New Zealand the Mental Health Foundation of New Zealand charity works toward creating a society free from discrimination, where all people enjoy positive mental health & wellbeing, and promoting MHAW.

They’ve marked this week since 1993 and are committed to an Aotearoa where we can all feel good and do well.

Recognising that life has been a bit of a rollercoaster lately, what with a sense of overwhelmedness with everything that is going on in our world at present, and the multiple stressors that are hitting us from all angles. We’ve faced uncertainty, unfamiliarity, and hardships that have left us with mixed emotions.

MHAW have adopted five simple yet proven actions that you and I can use every day to help us each find balance, build resilience and boost our wellbeing. These five ways to wellbeing* practices can be easily incorporated into anyone’s life, regardless of their situation. 

GIVE / TUKUA 

Give your time, your words, your presence;
tukua te wā ki a koe, ō kupu, ko koe tonu.

BE ACTIVE / ME KORI TONU 

Be active, do what you can – whāia te mea ka taea e koe,
enjoy what you do – kia pārekareka tāu i whai ai,
move your mood – kia pai ake ō piropiro.

KEEP LEARNING / ME AKO TONU 

Keep learning and embrace new experiences, awhitia te wheako hou,
see opportunities – kimihia ngā ara hou,
surprise yourself – me ohorere koe i a koe anō.

CONNECT / ME WHAKAWHANAUNGA 

Connect, talk and listen – me kōrero, me whakarongo,
be there – me whakawātea i a koe,
feel connected – me rongo i te whanaungatanga.

TAKE NOTICE / ME ARO TONU 

Take notice of the things around you, remember the simple things that give you joy – me aro tonu ki ngā mea māmā noa i ngākau harikoa ai koe.

There are many practical ways in which you and I can help look after our mental health or that of someone else and the five ways to wellbeing, help encapsulate these.

As we put them into practice we’ll start to notice things get a little easier as we go about our everyday lives.

MHAW have also created a wide range of resources which are available for you to download for free, check out the following;

  • The MHAW Guide has activity ideas that can be used all year round and there’s also an action plan and a handy section about how to have a safe and supportive kōrero with someone who’s struggling.
  • The mindful colouring template can be used if you’re looking for a calming activity.
  • A popular Workplace Kōrero Card Set is available to download in printable and slideshow versions. Use it in your groups, activities or next meeting to help build stronger connections with the people around you.
  • MHAW PowerPoint Quiz – Looking for an engaging way to introduce the Five Ways to Wellbeing to your hoamahi (colleagues)? Download this interactive Five Ways PowerPoint quiz! It’s a fantastic tool to make MHAW come alive in your setting.

If you or someone you care about are in need of some help, below is a list of some of the services available in New Zealand. They offer support, information and help to get you through whatever you are facing.

All services are available 24 hours a day, seven days a week unless otherwise specified.

Are you feeling in crisis, facing immediate physical danger to yourself or others? Then call 111. For more information see mentalhealth.org.nz/ in-crisis.

Just need to talk?
Free call or text 1737 any time for support from a trained counsellor
Lifeline – 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP)
Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)
Youthline – 0800 376 633, free text 234 or email or online chat

Note: Although the above post is focussed predominantly towards Mental Health and MHAW here in NZ – The five simple actions can be used in our every day to help us each find balance, build resilience and boost our ‘general‘ wellbeing, regardless of what we are facing in our health journeys 🌻

Blessings ’til next time 🙂

* The Five Ways to Wellbeing were created as a result of the New Economics Foundation’s (NEF) Foresight Project on Mental Capital and Wellbeing research report.

NEF conducted a review of the most up-to-date evidence and found that building five actions into day to day lives is important for the wellbeing of individuals, families, communities and organisations.

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Health Update #14

Posted in Blogs, Books & Music, Health & Wellbeing, tagged , , , , , , , , , on September 16, 2023| 2 Comments »

Earlier this week, I was hooked up to a ‘new’ machine, getting the first round of my four-monthly Rituximab infusions, for Scleroderma with associated Interstitial Lung Disease. However, to get to this point, has been a bit of a rigmaroll 😦

Initially we had to explain to the Rheumatologist, via email, that my treatment protocol had been changed, about a year ago, to four-monthly.

Then, to top things off, it took an extra week and a half to get the prescription to the chemist as it had been sent, via snail mail, to our house 🤔

Just when we thought that the appointments with the Medical Day Centre at Hutt City Hospital could get confirmed, I needed to reschedule my proposed appointment for a week later, as the medications were taking longer than anticipated and compared to how long they had previously taken to get here, due to the fact that there weren’t any in the country for the supplier.

A week later (Monday morning), I was on the verge of having to reschedule my appointment, yet again! As the Rituximab hadn’t arrived in Wellington. The chemist assured me though it was now in the country and that they should be here in time. If needed, he offered to deliver them to me personally on his day off to the hospital, now that’s service.

This all meant that I’d have to go to the Phlebotomists again, for the second time in a week, to get my blood sucked out, by one of there vampires, so that it could be sent away for testing 😆

Nah only joking, in reality, this was a breeze as the testing centre was empty, the phlebotomists were friendly as, and I was in and out of there real quick – all but another bruise and plaster to show for it.

Over the past few months or so, I’ve noticed that the bruising appears very quickly where they insert the needle and it takes a lot longer to heal.

So, I alternate which arm they take my bloods from each time I visit them.

In the past, this was something that didn’t tend to happen at all – maybe my skin is getting tired of being prodded and stabbed so often 🙂

Later that afternoon, I got a phone call from the chemist to pick the meds up, as they’d arrived in the mid-afternoon delivery.

So here I was scampering down Cuba Street, with walking stick in tow at 4:45pm, picking up my meds before they closed, en route to pick up Annette from the airport.

She’d been away in Invercargill for the 140th celebration of the Corps for the weekend, and she’d used the opportunity to catch up with Christina & Jonny and our grandson Jack, along with Patrick and Delana. Emily had also been down for the week, so all the kids were together for some much needed family time (excluding me 😕)

Anyhow, you’d think that after being at the Medical Day Centre so often in the past few years, I’d get used to seeing familiar faces and facilities.

But it would appear that they’ve not only had a few upgrades in equipment, they’ve also got a lot of new faces, there were only one or two faces that I knew from my last visit.

However, for the most part they were a much younger team and they provided excellent friendly service to me and the others that came and went throughout the day who were getting infusions for a variety of different ailments. I must say though, that some of the nurses, and even the doctors, looked a lot younger than my own children 😳 Am I really getting that old?

The procedure itself went reasonably well, yet again, which I’m forever thankful. To date, I’ve not had any adverse effects from the meds, and although it knocks me for a day or two afterward, (generally tired – but what’s new) 🙂 I do bounce back reasonably quickly feeling a tad better, and can breathe a bit easier, with my O² levels improving as well.

Settling into a comfy recliner chair, I finished writing a post entitled ‘Season of Creation‘ while I was infused with Rituximab and I listened to a progressive rock project, ‘United Progressive Fraternity‘ (UPF).

I’ve recently been introduced to this group through Spotify and have come to really enjoy their music and the environmental message that they are trying to get across, which is timely as we are in the ‘Season of Creation‘.

I ended up listening to both Planetary Overload Part 1: Loss, and Planetary Overload Part 2: Hope. Both albums by the UPF project fulfil a lifelong ambition and passion of Mark Truey Trueack (Unitopia); to bring people together under a common love of music and concern for humanitarian issues and the environment. 

Why not check them out for yourself if you enjoy progressive rock music 🙂

Anyways, in another two weeks, I’ll go through the whole infusion process again to get the second course of Rituximab into my system. This time, it should be a lot smoother, as they’ll have the vials stored in the fridge ready to mix.

The things we go through to help prolong the deterioration of our lungs, or any other organs for that matter, beggars belief at times. Those with rare disorders, invisible disabilities, and autoimmune diseases know all too well the daily struggles and challenges that one has to go through – but go on, we must!

Sometimes it can feel a bit like deja vu going through the infusion process and also having to navigate a health system, which at times could make things a lot simpler for the ones having to access their services. Maybe that’ll happen in time – we’ve gotta hold out hope right! 

Ironically, the third Interstitial Lung Disease (ILD) Day was celebrated in the US this week, and I’ll be writing an additional post about it in due course, which should be out in the next week. So keep an eye out for that.

You can also keep up to date with my health journey here. It has a series of other posts related to Scleroderma that you may be interested in reading.

Blessings ’til next time 🙂

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