Thursday, May 31, 2012

Another Journal Page

I did this a few days ago, and I think it turned out a bit on the dark side. I have been feeling pretty lousy, so maybe it shows! :)

Pane's Best
(click for details)

For some reason, this mixed media piece of a decayed wall scans unevenly even when doing it twice. The base is a baby wipe I used as a brush cleaner, and then I put heavy matte gel on the page. I made a texture circle, added some cording, acrylic paint and rubber stamping. 

Come see my latest postcards I've received on Postcards Buffet!

Wednesday, May 30, 2012

Overall, not good

Slow, exhausting, continual relapse, been going on for weeks now. If you get tired of reading about ME/CFS, then you know how tired I am of having it. I am trying to advocate for all of us who do have it, and the many who don't support them.

I am so thankful for my Lord.

Hope you will take the time to watch this video.

Thursday, May 24, 2012

Dance My Child

Another journal page, playing with gesso, scraps, acrylic paints, oil pastels, old image, ribbon and Stabilo pencils in a collage. This may or may not be finished, I'm not sure!

(click for details)

Weather is much more humid today, and I guess that it should be expected - after all we are in the South! I will be glad when the Grackles stop overpowering the bird feeders - I know they are feeding babies, but they are such bullies and take so much! The Bluebird eggs have hatched in the standing birdhouse and they look so helpless. The parents are very protective of them. We have a chipmunk living in the rock pile near the birdhouse and when the chipmunk scampered out, the Bluebird parents started dive bombing the poor thing, even though he is not the least interested in the babies! 

And life goes on!

Come see my latest postcards I've received on Postcards Buffet!

Tuesday, May 22, 2012

Wall Hanging Progress, and a Story: Deep Blue Sea

Here are the latest pictures for the wall hanging, work-in-progress. It tells a story, but it is not quite ready to end. I have some more work to do and will keep adding pictures.

(click for details)
As you might remember, the base is Tyvek, which is very flexible and allows for painting, stitching, whatever you want to do. The base was collaged with papers, fabric, lace, origami mesh, cheesecloth, acrylic paints and oil pastels.

Closeup 1
(click for details)
The houses were cut from book pages, altered with inks and images and wire windows were added. I have yet to add the window on the top house. Buttons were sewn on. 

 Closeup 2
(Click for details)

The image of the girl is a tag I had made a while ago, and underneath her are pages, stained cheesecloth and stained muslin. Click here to see the beginnings. I have had several rough nights where I either can't get to sleep, or wake up at 2:30 AM, and have mostly worked on it then. I'm pleased with how it's coming along and look forward to adding more to it as the story all comes together!


Deep Blue Sea
53rd in the Tuesday Story Series

When my father was in his seventies, and was still able to travel, he started a tradition which was repeated for several years. Every year, he would make a group reservation for a Gulf Stream fishing boat out of Charleston, and we would all chip in. Usually in May, before the weather would be too hot, a group consisting of my Dad, one of my sisters, brothers, my uncle, several cousins, in-laws and various friends would meet together at 5 AM at the dock, usually still in the dark. Dad and other family members would come down the day before and stay with me, and we would get up at 4 in the morning, meet several of the others at an all night restaurant in Mt. Pleasant and some would eat breakfast, the rest drinking coffee and talking. Some of us had found out that it was better to be very careful what we ate before a 3 hour trip on the open sea! 

The boat had an open top deck for seating, and an inside cabin. Most of us stayed on the top, braving the wind and sprays because it was easier to calm the stomach in fresh air. Often if there were no clouds on the horizon, we would see dawn break and watch the cargo ships passing on their way to the busy Charleston ports. What was really thrilling was to see the submarines come in (the Navy Base was still open then). You just don't realize how large and imposing they are until you pass within a short distance of it traveling above water. There were usually several sailors up top and we'd all wave to them and yell. And some of the container ships which moved determinedly towards the city were huge, with stacks of trailers on their decks which would dwarf a small town. 

Once we got to the Gulf Stream, the color change in the water was amazing. Light aqua greens and blues reminded you of a tropical island. It was not unusual to see a sea turtle go past, or watch a school of flying fish. The captain would use his radar to spot a likely group of fish, and did his best to place the boat right over it. Once done, the boat hands would call out for us to go to our poles, which we had placed in a chosen spot around the boat. We usually fished off the back of the boat, because there was less likelihood of the lines getting tangled.

Our boat looked similar to this one. The boat we used is now retired.

Bait was cut up squid, and we had 2-3 hooks on the line. I would bait my line, then press the release button and down it would go for 200 or more feet. The boat hands would be moving all about us, detangling lines, helping to pull in fish with a gaff, or taking the fish off the line. There was a large freezer on the back of the boat, and as you caught fish, they would mark it with your ID and throw in with the rest. We would catch grouper, spot tail bass, red and pink snapper and small sharks. Once in a while, I or someone else would pull in a trigger fish or a dogfish, and one of the boat hands would yell "Don't touch it!" and come cut it off and add new hooks to the line. Dogfish have poisonous spines and trigger fish have a small mouth with razor sharp teeth, so I was glad the guys were there to help!

The squid would be inky and slimy on our hands and clothing and sometimes we would catch our fingers on a hook. It was a balancing act with the boat rocking on the waves, and sometimes we would be in a rain shower. Your thumb got very tired pressing the button to reel in the line, and you had to occasionally reapply sunscreen out on the bright water. You smelled like fish and were bone tired when the boat headed back in at the end of the day. Lunch was chili dogs and water or soda, or crackers and snacks. (Some of the other passengers brought a cooler of beer, and sat up top just drinking. That was an expensive beer party!!) It usually took till the next morning before you would stop feeling the boat rocking, which made a kind of odd sensation when you were taking a shower later on. Once, upon arriving home, and barely able to stand up, my husband (who is not a fisherman) stood there for a minute taking in my smelly appearance, disheveled hair, filthy clothes and my plastic bag full of freshly cleaned fish and said "I don't understand why you do it!" I just looked at him and said "It's FUN!" 

And it was. And those were great trips!

Come see my latest postcards I've received on Postcards Buffet!

Sunday, May 20, 2012

Journal Page

Another journal page. Sometimes a page is worked on over several days time, until it seems "done". On other pages, I scribble and make notes of ideas I see in some of my art publications. This one has a scribble and then it exploded into art over several days, as I had the energy.

(click for details)

I used acrylic paint, stencils, oil pastels, rubber stamp, postage stamps and a bit of lace, on top of collage scraps and pages.

What beautiful days we have been having! It is the 20th of May, and nighttime temps are down in the high 50's, with daytime in the 70's. My darling husband bought me a rope hammock for Christmas and I have been able to put it to great use! I have had the window open in my studio and have enjoyed the bird calls and buzzing of bees. The peanut feeder outside my window has been refilled many times, as Downy and Hairy woodpeckers, finches and titmice fight over whose turn it is. The bluebirds in the standing birdhouse has started another family and the ones on the porch nest platform have launched their first brood. I saw a Chipping Sparrow with a beak full of dried grasses to line its nest. I had to change some of the configuration of the bird feeders because the greedy Grackles were wiping out everything before many of the other birds had a chance. I've watched cardinals, bluebirds, starlings, titmice, and several other birds feed their flying young which followed them to the feeders. The breeze is wonderful! I saw a chipmunk run to hide in the pile of rocks in the back yard. Flowers are growing and the red rose we planted in the corner of the fence is a beautiful spot of color with the sunshine on it. 

We are blessed!

Come see my latest postcards I've received on Postcards Buffet!

Tuesday, May 15, 2012

Project Moving On, and a Story -The Lt. Colonel

Two weeks ago, I began a project on Tyvek (see here) and showed the materials to be used on it. I have worked on it as I could and here are some update photos. I have actually done a lot more since I took these pictures but I haven't photographed them yet. But at least you can see how it's proceeding!

There are several paint layers on it now, and it's evolving, as these projects often do, into something completely different than I had in mind when I began. I will update soon!

The Lt. Colonel
52nd in the Tuesday Story Series

My father was born in South Carolina and my mother in Pennsylvania, so I have ancestors who fought on both sides during the Civil War. On my father's side, among many relatives who fought, one was his great grandfather who was a Lt. Colonel in the Confederacy. 

Born one of eleven children, Daniel Livingston married Narcissus Fanning and they had  ten children, one of whom died in infancy. The only photo I have of them shows him in his uniform, and her in a simple dress with a thin kerchief around her neck. She looks forlorn and tired, even more so than subjects of photos from that era usually do. During the years I was doing research on the family line, I was contacted by someone who claimed that he was descended from Daniel and his wife's sister. I had noticed that this sister was living with them when one of the census records were taken, so it could very possibly be true. With DNA testing available now for genealogy testing, it would be easy to find out. If it were true, that could explain why she appears the way she does.

Daniel joined the CSA as a Captain in Company B, Unit 1, Hagood's SC Infantry. He was wounded in Second Manassas and Sharpsburg. A story has been passed down that he was severely wounded during the Manassas battle and was found by a Virginian family and taken back to their home and nursed back to health. In gratitude, he named his seventh child after the family and the town they lived in - Quincy Fairfax Livingston. A family named Quincy living in Fairfax VA hasn't yet been located but it could still be possible.

If you have read anything about the armies during the Civil War, you will know that they do not reflect the US Army as it is now. On both sides, the men were free to leave after their three month subscription, or leave when it was time to plant or harvest. Officers were elected by their men, or named so by commanding officers who perhaps had favorites among the men they commanded. It was a loosely organized group on either side. I found letters my grandfather wrote requesting supplies and his handwriting was beautiful, which indicates that he had an education. At some point, the men he commanded complained about him after he was promoted to Lt. Colonel and he resigned his post. On the surface, that doesn't reflect well on him, but as I have read and studied that period, it was not an uncommon occurrence. After he left on 3 Mar 1864, he joined a local garrison in South Carolina, which was glad to have him.

I found his obituary in a small South Carolina newspaper, the Southern Christian Advocate, written by his pastor, George H. Pooser. It reflects the life of a man who earned respect, even though he had made mistakes. I think it's a reflection we would like to speak of ourselves when we are gone - that we suffered the frailties of our human form, but in the end we were "prepared for the change" as we go forward into eternity.

“Livingston SC- 
Col. Daniel Livingston was born in Orangeburg Co. SC Nov 27, 1827 and died Oct. 28, 1881. He was married to Miss Narcissa M.C. Fanning, April the 5th, 1849, joined the Methodist Church at the Boiling Springs Camp meeting and made a profession of religion six years ago. He rose to the rank of Lieutenant- Colonel in the Confederate army, was a man of strong attachment and warm friendship. Like other men, he had his faults, but he had the gift of drawing others to him. He was attacked with paralysis about five years ago, but recovered partially from it, so that he was able to go about until last March, when he was stricken down and confined to his bed almost constantly until he died. I visited him frequently during his last illness, and he assured me on several occasions that he was prepared for the change; as he did members of his own family before he breathed his last. He leaves a widow and blue (?) children, with a large circle of relatives to mourn his loss. Said one who knew him well, “Colonel Daniel Livingston will be missed.” He bore his sickness of seven months with much fortitude and patience, and his remains now repose at Hebron Church, Edisto Circuit.” G. H. P. 

Come see my latest postcards I've received on Postcards Buffet!

Tuesday, May 8, 2012

Read and Learn

Today I had my yearly physical, and because I have had very poor sleep in the past few days, it was very exhausting for me. I came home and after lunch I slept for 2 hours, something I am hardly ever able to do. I was still very fatigued after I woke up, but I am glad I was able to nap.

I did not write a story today because of that. I am substituting instead an article written in the British Daily Mail about ME/CFS. I know that some of my readers are very supportive and understanding of my having the illness, but I also know that many people just "don't get it" and that that ignorance is widespread in the public. Are you one of them? I've seen it first hand, I've talked with others who have ME/CFS and the abandonment they have struggled with, is heart breaking. I know of at least one divorce, because the husband just blamed the wife for "not trying hard enough". 

I know many doctors refuse to see it as an illness, just as they did fibromyalgia 20 years ago (my GP is not one of them, thankfully!) I know that many people see it as a mental problem, or a spiritual problem, and therefore dismiss it as something a person can personally decide to change. I know that people with ME/CFS are often told that the loneliness and grief that accompanies the isolation is their own problem-why would anyone want to come see someone who makes their visit uncomfortable? I know that in Christian circles, sufferers are often chided for not being "a good example to others" - you know, "smiling in their pain and being an inspiration" instead of struggling with the grief of a life lost and not expected to be regained. I know that a lot of people don't understand it, and then make no effort to do so, and they simply drift out of your life, people you have known close to 30 years. Nor do they ever ask how the family is doing with the life changing illness. I know that some family members often question your motives for claiming to have this illness. I know these things because they have happened to me.

A ME/CFS sufferer usually looks normal. They even have some days when they can act normal. Often, there's not a cane or a wheelchair to point to. So people doubt you and make judgement calls. It's compassion which is missing from the conversations, we are not asking for pity. Just belief.

So, I am mounting the soap box again today, sharing this article with anyone who reads this blog. Here's the link for the actual article. If this strikes a chord with you, then I am pleased. As my Doctor told me today, many people do not learn compassion until they undergo a severe struggle of their own. I pray that people who read this won't have to suffer to understand the sufferings of others.

(Please keep in mind this is a British publication, so the writer is speaking of her government)


All in the mind? Why critics are wrong to deny the existence of chronic fatigue

This week is Myalgic Encephalomyelitis Awareness Week or, as it's more accessibly referred to these days: M.E. That may not mean a great deal to you. Certainly, it didn't to me.

Oh wait, yes it did.

Based on no personal knowledge whatsoever - fortunately neither I or my loved ones have M.E. - my judgement was gleaned from how the world has portrayed the illness.
Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families
Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families

Like millions of others, I have seen M.E. through the eyes of the medical establishment, the Government and the Media. The picture has not been good.
Here is what I have previously understood about M.E. and those who have it.
M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.
Damn it. We're all tired. Especially those fools like me who work all hours God Sends (and even some he doesn't) to support the type of people who say they are too tired to work.
Oh, and mostly, importantly, M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude.
That, generally, is what I thought about M.E.

Until, that is, a reader sent me a DVD of a British-made film about the illness titled 'Voices From The Shadows'.
I receive dozens of clips and films each month, and I try and see as many as I humanly can, but there was something about 'Voices...' that stopped me in my tracks. 
One of the reasons the film had such an impact is because it challenged my deep-seated preconceptions about M.E.  
Through 'Voices...' - and the subsequent research I have conducted - I have come to realise that what I thought I knew about the illness was a fallacy but, more importantly than that, was actually detrimental to those affected.
So, as a naturally curious individual (I'm not a journalist by mistake) I began to question why I had been furnished with one version of events - and inaccurate ones at that.  
The more I began to delve into the subject the more curious it all became.
Like for example, why are records pertaining to ME locked away in our national archives in Kew for 75 years? The normal period would be 30 years.
75 years, the period generally used for documents of extreme public sensitivity and national security, is excessive.
The reason given, that of data protection, is a nonsense as it is perfectly acceptable, and easy, to omit names on official documents. The excuse, supplied in Parliamentary questions by the Department of Work and Pensions, didn't wash with me.
Why, I thought, were they making such an exception?
It got me thinking about what information the files actually do contain. And, seeing as the topic of M.E. is still beset with misunderstanding, we could all benefit from some enlightenment on the subject.
So, to this end - and seeing as it M.E. Awareness Week - here is my personal guide to shattering the myths and blatantly-pedalled untruths about M.E.

Myth No. 1: ME is a mental illness
Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in suporting it as a physical condition.
I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.
Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is.

Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:
'The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don't handle themselves correctly they can become worse.
'At the more severe end of the spectrum there's a minority of patients who are truly in a pitiable state...some of them in hospitals, some of them at home...and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.'
M.E. sufferers are subject to a battery of controversial fit-to-work assessments
M.E. sufferers are subject to a battery of controversial fit-to-work assessments.
Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.
In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.
Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.

Myth 2: ME is just extreme tiredness, right?
Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy.  
This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.
The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.
For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.

Myth No. 3: M.E. is just like a bad flu
Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.
As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.

Myth No. 4: M.E. sufferers should just 'pull themselves together'
Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.
Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.
M.E. is not a case of the mind being able to heal itself with determination.
M.E. breaks the body down and that also includes the brain.

Myth No. 5: Only adults have M.E.
Children have M.E. and their childhoods are destroyed as a consequence.
Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.
"Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear. 
"Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles.

Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.
Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.

Myth No. 6 - You can 'catch' M.E.
A  hotly contested issue. Data suggests it's possible but the true cause is still subject to much debate among the more knowing professionals. What appears clear, however, is that ME seems to follow on from various viral infections, including meningitis. More research is needed.

Myth No. 7: Real M.E. sufferers are few and far between
There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?

Myth No. 8: Only severe cases of M.E. are worth acknowledging
Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.
The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.
Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude.

In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.

Myth No. 9: Children with M.E. have neglectful parents 
There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.
This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.

Myth No. 10: Physical exercise will benefit M.E. sufferers
Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.
During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.
The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'
Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.
She told me:
"Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"
This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.

Myth No. 11 - M.E. is not life-threatening
It is, although the true mortality rate of M.E. is mired in great confusion.
Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.
As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.
According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.
For campaigners this is nothing less than a fudge of the true scale.
Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.

Myth No. 12: M.E. is an excuse not to work
Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.
Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.
When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.
So, for M.E. Awareness Week, let us be clear. M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely.
The fact that it is still so widely misunderstood is a modern day travesty that must be addressed without further delay. Or is it convenient that we still view M.E. as being 'all in the mind'?
I believe that we, as a nation, deserve to know the truth. Not only for those still battling the disease, but for those poor souls who have already been lost to it.

* For further details on Voices from the Shadows:

Read more: