Scleroderma – More than Skin Deep

Over the past few years or so as I’ve been journeying with Scleroderma, I am often confronted with a comment or statement along the lines of; “But you look so healthy!” and I get it for the most part, I do!

Yes, I have a reasonably nice looking tan (especially on my arms), my skin appears to look reasonably young for a guy that has been around for half a century and who’s remained reasonably active up until a few years ago.

But outward appearances can be deceiving!

A while back even one of the general practitioners that I was seeing for other health related issues said that “just by looking at me, if he didn’t know any better he’d say that  there was nothing wrong with me.” On one level statements like those could cause offence, but I’ve grown somewhat used to it.

You see, Scleroderma is more than skin deep.

Recently, I came across a short poem on one of the Scleroderma facebook groups written by Jan Brooks entitled ‘They Could Never‘.

It resonated with me on a number of levels after receiving a course of medications intravenously which has knocked me about for the past few days or so. (You can read about my health updates here) 

They could never imagine, what you have to go through, the depth of your pain, and the disabilities too.

They could never understand, how you struggle everyday, just to live your life, in a manageable way.

They could never comprehend, why you feel so much pain, you hurt all over, so hard to survive the strain.

They could never quite believe, just how much you endure, what you really face, forever hoping for a cure.   

So, what is Scleroderma?

The term Scleroderma comes from the Greek ‘skleros’ meaning “hard”, and ‘derma’ meaning “skin”.

In essence it causes the hardening, thickening, and tightening of the skin which oftentimes causes devastating results to one’s facial appearance and one’s mobility. As it can also attack the Vascular System, cutting off blood flow to extremities affecting people’s hands and feet.

It can also affect the Gastrointestinal Tract, and other internal organs like the Heart, Kidneys, Lungs, and Esophagus.

It is a rare and debilitating autoimmune disease which currently has no cure. Unfortunately it’s often progressive and sometimes, fatal – affecting every age and gender and it’s neither preventable or contagious. It confuses the best of the medical field by making it difficult to diagnose.

Scleroderma steals lives, families, friends, jobs and so much more. 

Scleroderma Awareness Month.

In November 2018 I was initially diagnosed with this rare autoimmune disease hence why I’m doing what I can to help raise awareness of Scleroderma especially during the month of June.

For more information about Scleroderma, please check out my page on it and the links to other Scleroderma websites, or the Did You Know? page which provides interesting facts about the disease.

Please help other people like me “Raise Awareness” of Scleroderma, by sharing links to this blog and information about Scleroderma on your social media platforms with family, friends, and co-workers. As raising awareness of Scleroderma is one of the “Greatest Gifts” that you can give to those who have Scleroderma.

If you are able to, maybe you can help donate monies to one of the following, or create a fundraiser of your own:

The Scleroderma Support and Education New Zealand Trust Givealittle page which has been set up to support & educate people living with Scleroderma, empowering them to make informed decisions regarding their own health care.

The Scleroderma NZ Givealittle page has been set up to raise funds for the national support group which helps patients and their families to cope with this rare and difficult disease to manage.

Thank you for your time! 🙂

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A Mighty Fortress

Over the past month or so as part of my daily devotions in the YouVersion Bible App I’ve been journeying through the Book of Psalms, drawing inspiration and encouragement for my own life from the writings authors.

And although I am not quite ⅔rds of the way through them I’ve come to appreciate that the Psalms are in essence an intricately designed collection of poetry that recounts Israel’s history and God’s covenant promises, and poetically retells the entire biblical story.

The psalms comprise the ancient hymnal of God’s people and its poetry was often set to music, expressing the emotion of the individual poet to God, or about God.

There are psalms of lament, which express the author’s crying out to God in difficult circumstances. Psalms of praise, also called hymns, which portray the author’s offering of direct admiration to God. There are thanksgiving psalms which usually reflect the author’s gratitude for a personal deliverance or provision from God.

There are also pilgrim psalms which were used on pilgrimages “going up” to Jerusalem for their annual festivals, and other types of psalms such as wisdom psalms, royal psalms (referring to Israel’s king or Israel’s Messiah), victory psalms, Law psalms, and songs of Zion.

The book of Psalms expresses worship and throughout its many pages they encourage its readers to praise God for who He is and what He has done. Which I’m sure is something that well renowned preacher, theologian, and the leader of the protestant reformation, Martin Luther knew and was enamoured with.

Now Martin Luther as early as 1517 started translating the Psalms into German and as he was also a gifted musician he wrote and composed the famous hymn: “Ein Feste Burg Ist Unser Gott,” – “A Mighty Fortress Is Our God” in 1527, basing it on a paraphrase of Psalm 46.

A mighty Fortress is our God,
A Bulwark never failing;
Our Helper He amid the flood
Of mortal ills prevailing:
For still our ancient foe
Doth seek to work us woe;
His craft and power are great,
And, armed with cruel hate,
On earth is not his equal.

Did we in our own strength confide,
Our striving would be losing;
Were not the right Man on our side,
The Man of God’s own choosing:
Dost ask who that may be?
Christ Jesus, it is He;
Lord Sabaoth His Name,
From age to age the same,
And He must win the battle.

And though this world, with devils filled,
Should threaten to undo us,

We will not fear, for God hath willed
His truth to triumph through us:
The Prince of Darkness grim,
We tremble not for him;
His rage we can endure,
For lo! his doom is sure,
One little word shall fell him.

That word above all earthly powers,
No thanks to them, abideth;
The Spirit and the gifts are ours
Through Him who with us sideth:
Let goods and kindred go,
This mortal life also;
The body they may kill:
God’s truth abideth still,
His Kingdom is forever.

Helen Steiner Rice it would appear also became somewhat enamoured with the Psalms, after the death of her husband, the editor at her workplace, and her mother. As she began to write inspirational verses to friends and co-workers and enclose them in personal notes and letters. These reflected her growing and deepening faith and reliance in God.

One such example are the words to a poem entitled Faith is a Mighty Fortress which she penned in 1967.

We look ahead through each changing year
With mixed emotions of hope and fear —
Hope for the peace we long have sought,
Fear that our hopes will come to naught.

Unwilling to trust in the Father’s will,
We count on our logic and shallow skill,
And in our arrogance and pride,
We are no longer satisfied
To place our confidence and love
With childlike faith in God above.

And tiny hands and tousled heads
That kneel in prayer by little beds
Are closer to the dear Lord’s heart
And of his kingdom more a part
Than we who search and never find
The answers to our questioning minds  —
For faith in things we cannot see
Requires a child’s simplicity.

Oh, Heavenly Father, grant again
A simple, childlike faith to men,
Forgetting color, race, and creed
And seeing only the heart’s deep need.

For faith alone can save man’s soul
And lead him to a higher goal,
For there’s but one unfailing course  —
We win by faith and not by force.

May the words contained within the song lyrics and poem above be an inspiration and encouragement to you each today as you go about your business in the everyday 🙂

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A Sonnet for Ascension Day

According to the Book of Acts “After his death, Jesus presented himself alive to His disciples in many different settings over a period of forty days.

In face-to-face meetings, He talked to them about things concerning the kingdom of God.

As they met and ate meals together, He told them that they were on no account to leave Jerusalem but ‘must wait for what the Father promised: the promise you heard from me.

John baptized in water; you will be baptized in the Holy Spirit. And soon.'”

Acts 1:3-5 (The Message)

The Feast of the Ascension of Jesus Christ, also called Ascension Day was celebrated by some within the Christian Church last Thursday (26th May) and commemorates the day that Jesus ascended into Heaven after spending 40 days appearing to his disciples after his resurrection from the tomb.

The disciples had thought that Jesus was going to restore the earth to the Kingdom of Heaven. He instead promised to send the Holy Spirit to give them power from on high and then He ascended into Heaven and disappeared in a cloud. The above image painted by Dosso Dossi in the 16th century depicts this outstanding event.

“In the mystery of the Ascension (the glorious finale of the Easter Season) we reflect on the way in which, in one sense Christ ‘leaves’ us and is taken away into Heaven, but in another sense, He is given to us and to the world in a new and more universal way.

He is no longer located only in one physical space to the exclusion of all others. He is in the Heaven which is at the heart of all things now and is universally accessible to all who call upon Him” writes Malcolm Guite, a poet-priest and Chaplain of Girton College Cambridge. 

On Malcolm’s blog he shares a sonnet (poem) which I’ve included below. It is drawn from his collection Sounding the Seasons, published by Canterbury Press. The book is also available via Amazon UK, USA and Australia.

A Sonnet for Ascension Day

We saw his light break through the cloud of glory
Whilst we were rooted still in time and place
As earth became a part of Heaven’s story
And heaven opened to his human face.
We saw him go and yet we were not parted
He took us with him to the heart of things
The heart that broke for all the broken-hearted
Is whole and Heaven-centred now, and sings,
Sings in the strength that rises out of weakness,
Sings through the clouds that veil him from our sight,
Whilst we our selves become his clouds of witness
And sing the waning darkness into light,
His light in us, and ours in him concealed,
Which all creation waits to see revealed.

 

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