You are currently browsing the tag archive for the ‘CREST syndrome’ tag.


I just know you’re desperate to discover the latest when it comes to my health. (Ok, well, I can pretend.) Just remember that boring you with such goes a long way towards helping me come to terms with the nitty gritty.

The Good

The Cardiac consultant said there was no reason on earth why I couldn’t have the cataract operation on my right eye as soon as possible. Having been offered a cancellation a couple of weeks ago that I turned down on the advice of my GP, going to Pre-Assessment after Cardiology meant I was able to arrange the operation for 1st June (yes, this year). I am jubilant. As some of you know, I haven’t been able to see properly for a good five years. I am trusting that the surgeon will also be able to pluck out the second stitch that has forced its way to the surface on the left eye from the cataract operation in Crete over a year ago.

The Bad

The Cardiac consultant was charming, shook my hand, looked me in the eye and apologised profusely that I had been lost in the system.  I was originally referred for an Echocardiogram by the Rheumatology department which monitors my LcSSc/CREST. It turns out that the condition of my leaky heart valve, or Mitral Valve Regurgitation, is serious. (Don’t all sympathise at once — I’d much rather you made jokes.) I have to have another Echocardiogram in a week or so in order for the surgeon to see how much it has or hasn’t deteriorated since the December one. A decision will then be made as to how soon I should have open-heart surgery. If it is not considered urgent, it will be a three-month wait.

The Ugly

I bet you’ve been wondering what this could refer to ever since you saw the title! Admittedly, the word also applies to open-heart surgery but for the purposes of this blog, it’s the unsightly distended abdomen I developed overnight some while ago. This morning I’m at the hospital (again) to have an ultrasound to check what might be causing it. I’d have said it was just fat if the rest of my body had followed suit but it hasn’t. Naturally, I’ve been searching on Google and the possibilities are endless. I’ll keep you posted!

I nearly forgot — a course of iron tablets has done wonders for the breathlessness. It’s all tied up with anaemia, the heart and much else besides.

Footnote: Some of you may have noticed that I’m visiting blogs again. I can’t guarantee any consistency but I do feel better than of late.

Take care and keep laughing!

Sarah

Advertisements

FROM THE ARCHIVE 28th February 2013 – And I still haven’t done any more drawing!

The Lady in the Big Hat #1 Personalized Announcements by FirstNightDesign I am delighted to tell you that I have just sold one hundred invitations of  The Lady in the Big Hat. I often used to draw …

Source: The Lady in the Big Hat Invites You… | First Night Design

Take care and keep laughing!

Sarah


It’s World Scleroderma Day so another outing for this post to spread awareness of this little-known auto-immune condition that affects me.

It’s a very strange feeling when you discover that an artist you admire had the same disabling illness as you have, especially when it’s relatively rare, not to mention impossible to de…

Source: First Night Design | Me, Paul Klee, and Scleroderma


Originally posted on First Night Design.

It’s a very strange feeling when you discover that an artist you admire had the same disabling illness as you have, especially when it’s relatively rare, not to mention impossible to describe succinctly. Paul Klee — though it wasn’t diagnosed until ten years after his death in 1940 — had Scleroderma, an autoimmune condition that can be utterly debilitating. I have wanted to write about Scleroderma and its affect on my life and work for some time but I never thought I would be doing so with reference to Paul Klee!

In essence, Scleroderma in all its forms is a chronic circulatory and connective tissue disorder in which the body’s defences attack its own organs and tissues. The Raynaud’s & Scleroderma Association website describes it thus:

‘Scleroderma is an uncommon disease of the immune system, blood vessels and connective tissue. In this condition the skin, usually…

via First Night Design | Me, Paul Klee, and Scleroderma | First Night Design.


Hairdryer in Marc’s Garden by Paul Klee (1915) © First Night Vintage

Hairdryer in Marc’s Garden by Paul Klee (1915) © First Night VintageAvailable on Greeting Cards, Postcards, Prints, Stamps & Wrapped Canvas

It’s a very strange feeling when you discover that an artist you admire had the same disabling illness as you have, especially when it’s relatively rare, not to mention impossible to describe succinctly. Paul Klee — though it wasn’t diagnosed until ten years after his death in 1940 — had Scleroderma, an autoimmune condition that can be utterly debilitating. I have wanted to write about Scleroderma and its affect on my life and work for some time but I never thought I would be doing so with reference to Paul Klee!

Paul Klee in 1911, photographed by Alexander Eliasberg [Wikipedia]

Paul Klee in 1911, photographed by Alexander Eliasberg

In essence, Scleroderma in all its forms is a chronic circulatory and connective tissue disorder in which the body’s defences attack its own organs and tissues. The Raynaud’s & Scleroderma Association website describes it thus:

‘Scleroderma is an uncommon disease of the immune system, blood vessels and connective tissue. In this condition the skin, usually of the hands and feet, becomes stiff, tight and shiny. As a result of changes in these three areas, the body produces too much collagen. Collagen, which is the major protein of the connective tissue, binds the body together and is found in the skin, blood vessels, joints and internal organs, such as the kidneys, heart, lungs and bowel. There are several types of collagen and different forms are found in different parts of the body. They are produced by cells called fibroblasts. When fibroblasts produce too much collagen it results in fibrosis, i.e. thickening.

In addition to affecting the fingers, the fibrosis may spread to other areas and organs of the body. The arms, face, trunk and legs may be involved and movement of the limbs may become limited.’

Paul Klee as a soldier in 1916

Paul Klee as a soldier in 1916

Paul Klee was born into a musical family in Münchenbuchsee, Switzerland, in 1879. His talents were such that he could easily have pursued music instead of art but he found the musical milieu at that time ‘restrictive’ and was increasingly drawn to the world of art, even though his parents wanted him to follow a musical path. “I didn’t find the idea of going in for music creatively particularly attractive in view of the decline in the history of musical achievement.” (Wikipedia) He was a leading force in most of the prevailing movements such as Cubism, Expressionism and Surrealism, as is clear from even a cursory look at his work. He created a vast array of watercolours, etchings and paintings during his life.

Flower Myth 1918

Flower Myth 1918

I’d like to take up his story from 1931. Having taught at the Bauhaus for ten years he went on to teach at the Düsseldorf Academy. But everything came to an end in 1933 when a newspaper denounced him: ‘Then that great fellow Klee comes onto the scene, already famed as a Bauhaus teacher in Dessau. He tells everyone he’s a thoroughbred Arab, but he’s a typical Galician Jew.’ Wikipedia

His home was ransacked by the Gestapo and he was fired by the Düsseldorf Academy. He and his family fled to Germany the same year and returned to Bern in Switzerland.

Red Ballooon 1922

Red balloon 1922

While Paul Klee coped with the rarest and most severe form of Scleroderma, ‘diffuse systemic sclerosis (dss)’, I have ‘limited cutaneous systemic sclerosis’ (lcSSc). At the age of fourteen, I was diagnosed with the circulatory condition Raynaud’s Phenomenon, which in rare cases can be an indicator of a propensity to develop the far more complicated Scleroderma, as it was in my case. At twenty-one, soon after I had left drama school, the thrilling diagnosis was amended to C.R.E.S.T. Syndrome, as lcSSc was then known. Many of the symptoms are common to all forms.

Klee’s illness first became apparent — persistent bronchial catarrh — in 1935. He was constantly tired and that is one of the less painful things I have to contend with; a lack of energy has a serious affect on one’s life, especially if you’re in your twenties or thirties and expected to be as bright as a button. This is not so marked now that I’m in my late fifties!

Tale à la Hoffmann 1921

Tale à la Hoffmann 1921

Changes to the Klee’s skin and underlying tissue all over the body followed. Where he and I differ is that his hands were apparently unaffected. He had no problem painting and drawing. I, on the other hand (no pun intended!) have major problems with my fingers, which have become curled and distorted so that while I have always been able to touch-type, I can now only use two fingers on my left hand, three on my right, and my thumbs. This varies depending on swelling and infection, as well as the time of year.

Ad Parnassum 1932

Ad Parnassum 1932

Whatever else Klee might have endured previously, living in Germany in the late 1920s and early ’30s would have been terrifying and shows just how the body can be adversely affected. I have decades of experience to show the direct correlation between life events, my reactions to them, not to mention the cruel reactions of others, and the consequent changes to my entire body. In other words, both physical and emotional pressure exacerbates all types of Scleroderma.

Paul Klee and His Illness: Bowed But Not Broken by Suffering and Adversity
by Hans Suter

In the introduction to his book (above) about Paul Klee and Scleroderma, Hans Suter writes:

‘This star teaches bending’ is the telling title of a work on paper which Paul Klee completed in the year of his death. This brilliant artist lived the last few years of his life in Bern, but they were years which were overshadowed by a dark star. In 1935 Klee suffered a variety of setbacks and became seriously ill. Although he never recovered from this illness, he always maintained his love of life, facing his suffering with a trenchant ‘so what?’ But by 1940 he had to accept that there was no hope of a cure or any improvement in his health. The star had taught him to bend to the blows of fate.’

Klee’s grandson, Alexander Klee, who is now patron of The World Scleroderma Foundation, has this to say in the preface to Suter‘s book:

‘His later work, which was not only influenced by his illness, but which was done in defiance of that illness, is surely one of the most brilliant demonstrations of how suffering and sadness can be overcome through art and imagery, and in which, despite everything, irony can still shine through.’

Untitled 1940

Untitled 1940

The World Scleroderma Foundation writes:

‘Although human suffering is universal, not all of us are gifted with the creative talent to express such emotions; we are therefore grateful to Hans Suter for this splendid book in which we share this anguish through the eyes of a creative genius, Paul Klee. In one of his last pictures, ‘Tod und Feuer’ (Death and fire), one sees the tight, ashen face of the scleroderma sufferer facing his imminent demise.’

Death and Fire 1940

Death and Fire 1940


‘If only the enigma of death were not so ambiguous! No less so is the enigma of life, for one has to wonder what beauty and splendour can be found in the torments of recent times.’ Paul Klee, 1938


Related

Take care and keep laughing!

Sarah


The Lady in the Big Hat #1 Personalized Announcements
The Lady in the Big Hat #1 Personalized Announcements by FirstNightDesign

I am delighted to tell you that I have just sold one hundred invitations of  The Lady in the Big Hat.

I often used to draw but over the years, it had became increasingly difficult  because of the way  Limited Cutaneous Systemic Sclerosis (LcSSc) affects dexterity.  I’m certainly not suggesting I was an extraordinarily talented illustrator but I could get by and I enjoyed it enormously.

A couple of years ago I discovered LiveBrush software from Adobe and realised I could start drawing once more and without the associated pain.  I was over the moon.  The problem is that my first attempt was The Lady in the Big Hat and it felt like an utter fluke, that I would never be able to create anything comparable.

I have let this stupid lack of confidence stop me in my tracks when I should simply dismiss it with a snap of the fingers – a painful activity! — and just keep ‘doing’ it, keep drawing, no matter what.

Saying is one thing and doing it another.  But this weekend I’m going to give myself a good talking to, lift up my LiveBrush ‘pen’ or ‘pencil’ and go for it.  Life is too short.  Carpe Diem!

Here’s wishing you all a joyous and productive March.

Take care and keep laughing!

Sarah

 

*February is Raynaud’s Awareness Month

TRANSLATE

Award-Free Blog

About Me

about.me

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 15,283 other followers

Archives

Categories

Artists 4 Peace

Twitter

FND on Twitter

Facebook

FND on Facebook

YesterdayAfter

© Sarah Vernon and First Night Design 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Sarah Vernon and First Night Design with appropriate and specific direction to the original content.

The poor side of life

EXPOSING CRIMES AGAINST HUMANITY.EXPOSING THE GOVERNMENTS WAR AGAINST THE POOR.FIGHTING FOR BASIC HUMAN RIGHTS. SANCTIONS KILL.

For the Love of Art

Create, Explore, and Discover, Every Day.

Politics and Insights

Public interest issues, policy, equality, human rights, social science

IWtheatre

Supporting the rich amateur theatre scene on the Isle of Wight

Robin Hoskyns Nature Photography - Blog

Images and stories of nature, science and conservation.

Sarah Ditum

Writing, etc.

The Müscleheaded Blog

"Nothing Exceeds Like Superfluous Jejunity "

Jots from a Small Apt.

Largely @ Liberty

Rethinking Life

Art and the philosophy of life

%d bloggers like this: