As I shared last month, this year has certainly been a bit of a roller coaster ride for Annette & I due to my autoimmune disease diagnosis (Scleroderma & Raynaud’s) approximately two years ago, and the subsequent tests, medications and treatments to date.
On top of the Scleroderma and Raynaud’s I have also got some permanent lung damage. This is something that the specialists are wanting to ensure doesn’t get any worse by giving me a dose of Cyclophosphamide (Chemo) once every four weeks over a period of 6 months. This’ll also help with controlling the Scleroderma to some degree 🙂
At this stage I am still tapering off of the steroids that I am on, although at a much slower rate than was initially planned as I had some complications just prior to my last appointment at the Medical Day Stay at Hutt Hospital. The respiratory specialist doesn’t want me on them long term however as they can have significant side effects.
All in all I think I am coming right, and thankfully I haven’t had any adverse reactions to the medications to date. Although I will never be 100%, as the lung damage will limit some of my physical abilities.
Every now and again I have days when I feel as if I’ve been hit by a bus and can’t even make it out of bed.
The frustrating part of this is that there appears to be no sight nor reason why or when this happens. Sometimes I can be beavering away doing nothing of significance and still feel as if all I can muster is a trip to the loo and back to bed.
While other times I can be just as busy as the next person and the next day I’m ready to take on the world all over again. Or there will be days when I know that I’ve crammed way to much into the day and it’ll take at last a couple of days to get over it.
For years we’ve been told to “find balance in life“, I feel a Tui Ad coming on 🙂
Now, if you’re from New Zealand and of a certain age you’ll probably understand that aside, but I digress.
“Balance in Life” you know get things in order and you’ll be right – I think the reality is anything but and it would appear that some of the life coaches and wellness specialists are finally realizing that life is more about rhythms, stages or seasons.
Victor Hugo writer of the 1862 book Les Misérables which has been turned into a musical and numerous films once said; “To put everything in balance is good, to put everything in harmony is better.“
There are of course certain things where we can create a balance, but so many other things we just have to deal with the best we can. We have to experience the ups and downs of life so that we can be of benefit to others that are going through similar struggles and or challenges in life so that we can help them on life’s journey.
We have to learn to be content as the Apostle Paul teaches in Philippians 4:11-13 and we need to live harmonious lives – We were created by a loving Triune God “three harmonious characteristics of God living in One” who longs for us to live harmonious lives; firsty with Him and secondly with others.
This is at the heart of the Great Commandment; “Teacher, which is the greatest commandment in the Law?”
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself.’ All the Law and the Prophets hang on these two commandments.” Matthew 22:36-40 (New International Version)
Am I content that I have this disease? On the one hand absolutely not! I’d be lying if I said otherwise, maybe that’s why it is called a dis-ease. Is my life in balance? How can it be when I don’t know what tomorrow will bring.
However, on the other hand if I can use this experience for His glory and show others that you can remain relatively happy in the face of whatever we have to deal with and look on the bright side of life; living for the most part harmoniously with God and others, knowing that ultimately God is in control and that is all that matters – All we have to worry about is facing the various rhythms, stages and seasons with our faith in tact, relying on a God that has never let us down.
2020 may have been a roller coaster for many and I’m sure that 2021 will have its ups and downs – But we will get through this for God is on our side
You can read previous health updates by clicking on the relevant link; Health Update, Health Update #2, Health Update #3
To find out more about Scleroderma & Raynaud’s check out this page as it has a number of links to groups and organisations that are raising awareness of this rare disease.
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