Missing in Action on FaceBook …or are you just off getting a life? Not with Lupus unfortunately.

When you don’t hear from a friend normally, you expect or believe they are busy, and will be around again soon.

With Lupus friends it’s quite the opposite. They could be in Hospital, or just travelling not so well, as I discovered recently.

It is always a shock to find out a friend is in hospital, or so badly affected by their Lupus they are incapable of posting on line.

Often with Lupus it is hard to find the energy to post, and keep your spirits up if you are feeling like Hell. Also remember Lupus affects family dynamics too and can cause that “Black Dog” of depression to bite hard.

Keep an eye on your friends, try to notice someone who is “missing”.  They may have been admitted to Hospital, be having a Major Flare, having problems at home, or just be downright SAD.

So……………….what can you do?

Be there,  and care! It’s not a huge thing to do.

What not to do however, can be a bit harder.

We ALL know how it is, we’ve all been there. They don’t want your sympathy, rather, they will be “Back” when they are able.

When someone is struggling, often the LAST  thing they want is the world at large to know.

Don;’t bombard them with wall messages. Don’t put their personal stuff out there in Cyber World, it’s the equivalent of gossiping, and can be hurtful as well. If they wanted the World to know they would have taken out an advertisement.They will let you know or not, depending on how they feel, when they are ready. because, let’s face it, some of these Lupus People are Strangers to you, and you are a stranger to them.

Some however, are as close to your heart as Sisters, but you KNOW who they are, and can rally around them as much as you like.

Rest assured, unless you are a personal and close friend, your posts can be intrusive. Be a little sensitive too. There ARE people out there who DON’T want posts of the “God Bless you and heal you” type.  Likewise the Get well Soon type of post.I’ve deleted a lot of people who feel because I have Lupus I am the same as them, or have the same beliefs.

With Lupus you don’t get well, just a little better, or if you are extra lucky, a remission.

Don’t bombard them with cures, remedies and treatments.  If it worked our Doctors would DO IT. I’ve also deleted a lot of THOSE recentlly. Truly, does taking a bio balancing ionic salt cure Lupus. Get A  GRIP.

Tact and diplomacy are all. Try and remember how you would  feel about having your life at it’s worst out for all to see.

However, be ready to respond when they are “back”. It’s easy to tell. Their posts start to “sound” like them again, and it’s time to swing back in to action in that Wonderful World Wide Circle of Mystical Magical Lupus Friends.

THAT’S  when you can change your Gentle Lupie Hugs and thoughts  into great big Lupie Warrior Roarrrrr Fighter Bear Hugs………..

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Inspirations

I have been fortunate enough lately to meet some of the most inspiring people, and to have them become part of my Lupus Life.

So I think it is time to introduce you to them.

Firstly, my saviour at a time I was in need. While searching for support for my sister Cathy, who also has Lupus, and far more severely than I have, I met Gail C., who introduced to me to The Lupus Association Queensland, and helped me create that Magical Mystery Group of Lupus Friends.

My next Insiration was The Editor, the lovely guy who started The Lupus Magazine, henceforth known as TLM, which I would wait up for on the first of every month, in order to DEVOUR the articles.

And THIS  introduced me to my next Inspirational Lovees.

The TLM writers…WOW what a group of brave and dedicated people. And talented!! You won’t believe how talented these people are.

The Artist..who travelled half way around the world to meet LAQ and others. Her work is Stunning. And I had the pleasure of entertaining her for 3 days and nights. We toured and drove and took snaps and just oohed and aahed at scenery and aspects. Nights were easy. We collapsed in a Lupus Stupor..Stoopid Lupus. But in showing her my world, I saw it all again with fresh eyes.

The Pommie lass, a reet mint type of lady, with an amazing vocal talent and a skill in writing funny, poignant, and often downright crude articles, that unfortunately often provoked a back lash against her. Get over it people, she’s a dedicated Mum with the art of seeing life and people as it is, warts and all.

My Gymbastically challenged marshmallow sister, (an insider joke far too long to explain, although it is related to unfullfilled wishes and  typographic errors), who sees humour and challenge in everything, and manages to juggle a daughter, cats,a racing walking frame, and who has a family who have the BEST sense of humour EVAH!!

Little Princess Tiff, who never fails to look gorgeous, and who twitters away for Lupus each and EVERY day.

Ms Nothing is Kim-Possible, who writes a Blog full of humour, and who joined me in “Suessing” more than once. Perhaps one day I may post a few “Suesses” when i feel more inspired.

Lady Crystal Charlatan Killer, with her unerring ability to oust a Charlatan with one Click, and who wears her wolf with humour and dignity, yet fights him every day.

Ms Pirate Queen, who at a very young age has suffered some of the worst indignities and ailments Lupus can throw at her, but still manages a hearty  arr arr arr at Lupus, and who is slowly but surely getting HER life back, not allowing Lupus to conquer her.

My little red haired Circus Queen, who has in fact really run away to join the Circus, Lupus not withstanding, and is not allowing Lupus to interfere with her dream.

Far more numerous to mention is the World Wide Lupus Enclave, who come out to fight Lupus every day. They make me laugh, make me cry, and keep me sane.

Thanks Guys  for everything. YOU know who you  are.

When is Lupus NOT An Invisible Illness?

When you work and juggle Lupus and Coronary Disease with a Genetic Neuropathy , Lupus ceases to be an Invisible Illness. There are many times I cannot hide my Lupus away and just get on with the job.

I have been employed in my current job since late 2006, following a major heart attack, and the progression since then has been insidious and increasingly visible. From staggering on the stairs, to losing the plot, to looking like hell, to falling asleep at my desk, it’s all been on the agenda.

I’ve previously managed sales figures, written company publications, balanced stock and ledgers, designed macro spreadsheets, juggled team dynamics, controlled debtors ledgers, and processed payments for thousands of stock items on a monthly basis. However as my Lupus progresses, I can no longer do these things. My cognitive abilities have decreased and I think I’ve probably lost at least 20 IQ points in the last 2 years. However I have gained a great job with a great employer ready to give me the boost I need.

I‘ve been fortunate to have my Employer tailor my current job to my physical limitations.. As a Rehabilitation Return to Work Coordinator, and a Workplace Safety Officer, I can use my people skills, and my medical background  to the utmost, AND self pace my work load. And they’ve given me a three day week, which allows me to juggle those Clinic Appointments or just those “Lupie” can’t get out of bed days.

The joys of going to work knowing that if you are not up to par there are no deadlines to meet, is a tremendous help.  However, I think my Employers are Saints.  They’ve put up with so much and seen so much I think they know as much about the physical manifestations of Lupus as I do!

Going to work whilst having most unattractive rashes is not a great boost to your ego, and I appreciate that they hide me away in an office away from public view – well not really, but it’s nice to not be in public view when you are sitting at a desk (under fluorescent lighting) wearing a baseball cap and trying desperately not to cry your eyes out because you can’t remember the word/phrase/slogan  you want to put on your latest Safety Poster ,or the correct terminology on  a Plant Hazard Assessment.

Then there’s the fumbles…when you land your coffee/lunch/other  on your uniform and walk around with odd blotches and stains all day, looking for all the world like a walking bag lady. This dropsy also applies to pens, rulers, sheets of paper, paper clips, scissors and general stationery.

And don’t get me started on memory – try the Confidential File you can’t find because you’ve already filed it and forgotten you did, or worse, forgotten WHERE? Or knowing you had something planned for today…and forgot to write it in your diary. My best friend is the calendar in my email. And I have never found the scissors I took to the storeroom in August 2010. Or in fact the tape dispenser that went with it!

The Staggers also play a prime role in my job, my office is up one flight of stairs inside a rather large and draughty shed full of vehicles, equipment, tanks and asphalting kit. I can risk assess a Flocon Truck or an Excavator,  but can’t walk from here to there without wobbling, nearly tripping or otherwise endangering my poor body with bumps, scrapes and tumbles. And don’t let’s talk about stairs…when you can’t feel your feet, they can be more hazardous than walking a tight rope. I cling like death to both hand rails and shuffle off the landing until I am safely in my office, only to trip on a piece of nothing in front of my desk.

Lupus makes you TOUGH. I fell over forklift tines in January of last year. Two teeth knocked out, a broken wrist, split face,grazed knee, sprained ankle, and  shoulder Impingement , but I was back at work the next day. However whilst completing the paperwork at The Emergency Department I was asked my position. When I lisped through my split Lip “Workplace Safety Officer and Return to Work Rehabilitation Coordinator” the ED Clerk burst out laughing, as did the Intern behind her eying off the nasty (but subsequently well done) suture job coming up.

Lupus shows it’s face at my job everyday, but  you  know, I have a job, I love my job, and I’ll be damned if I don’t smack it down every time it dares show itself. I will work as long as I can, and I will enjoy every moment, because I take Lupus to work every day, but I’ll be damned if I’ll let it rule my job.

A Magical Mystical Lupus Tour, or Down the Lupus Rabbit Hole and Back Again.

When you are diagnosed with an illness as confusing and overwhelming as Lupus, your options seem limited. Indeed, just understanding Lupus itself can be somewhat confusing.

You know you have an Auto Immune Disease, so why do you see a Rheumatologist, rather than an Immunologist, a Haematologist or indeed, any other “ologist” depending on your symptoms? In fact do you even comprehend what an Auto Immune Disease is? Do you feel rather like Alice who lifted the bottle when told to “Drink Me”, to find herself shrinking into oblivion. Having been diagnosed with Lupus a number of years ago, I trusted my GP to do the best for me in terms of referrals and monitoring. In short, I followed the white rabbit down that hole into a nightmare non-wonderland of ignorance, confusion and depression.

WRONG! Educating yourself about your condition and seeking some form of support is a life line. Doctors can get complacent, Interns can be inexperienced, and even Specialists sometimes have difficulty maintaining a seamless treatment regime.  You need to understand what Lupus is, in order to know what Lupus may throw your way. This in itself can be a terrifying journey, as you delve into the symptoms and complications of Lupus, both Discoid and SLE. Understanding that Lupus is called “The great Imitator” may help you to know that many things can be a sign of Lupus, but how to know when to seek help, or where to look for this help can be a struggle for a new “Lupie”. The fear of developing some of the many complications, and suddenly finding yourself taking a cornucopia of unfamiliar drugs, some with rather unsavoury side effects is enough to confuse even the most grounded of persons. Don’t nibble at that mushroom without knowing what it will do to you!

Educating yourself about Lupus is probably the most sensible thing you can do, followed closely by allying yourself to a Support Network of some sort. This may be family or friends, but the chances are, they are just as confused, or more so than you are.  So – what do you do for help? Indeed where do you go for help? Sometime Google can be your enemy, the Tweedle Dum and Tweedle Dee of conflicting advice depending on what sites you land on. The fear factor on some sites can be terrifying.

Learn to ignore these. Also the Quackery encountered on the Internet is scary to say the least. “Eye of newt and wing of bat” has often come to mind when I have delved into sites promoted by those I refer to as “Quackery Dackery Docs”. The Mad hatter has nothing on those guys. In fact the Caterpillar’s hookah was probably less toxic than some of the stuff they peddle. Take every site with a grain of salt, research, educate yourself, and then research again. You are, after all, looking for support, and reliable information, not to spend your well earned dollars on “Smoke and Mirrors” treatments and cures. Ask your General Practitioner for any contacts he may have for Support Groups.  Chances are, unless he already has Lupus Patients, he will probably not have a clue. Unfortunately this is often where some of us should tell our GP’s where to go, in a kindly way of course.

I favour this type of GP fading into the oblivion of his own non committal, here we go again Cheshire Cat smile. You can try the Hospitals, but often end up going round in circles as the Inquiries Desk asks Loooo WHAT? And what Department would that be? Off with their Heads I say. Ask your treating Specialist if he knows of any Support Groups. A good Specialist not only understands your symptoms, but will also understand the impact Lupus has on your family, friends, job, study, and life in general. However sometimes Specialists are more concerned with your disease than your state of mind, or your “Need to Know”.

If this is the case, think laterally. Search the Internet Again! It is truly Wonderland. As long as you can learn to correctly interpret the types of sites you find you will glean a wealth of useful information. Use the Words Lupus, Lupus Support and Lupus information. Add the words Foundation, Association or Trust. Look for .org in websites. Look at sites that do NOT promise a Cure. Make sure the sites you access are not selling Supplements, Literature, Tapes or DVDS promising a CURE. Check the advertisements on sites. Search Social Networks. Put up Flyers on your community billboards, and in doctors surgeries if you can.

My lifeline ended up being, of all places, FaceBook, when I stumbled across Lupus Association Queensland.

This has given me the special gift of a worldwide Lupus Family, and the regular meetings have helped me in my transition from being a Lupus Sufferer, to that of a Person with Lupus. The difference is enormous.

A Lupus Sufferer is just that, a sufferer.A Person with Lupus is someone informed and comfortable about their disease, someone who knows the options available, and has the strength and knowledge to query treatments, educate themselves and others, and to insist on their right to be informed and respected as an individual. In short, A Person with Lupus is a person in control

The social aspect of a support group allows you to share your fears and feeling in a non-judgmental setting, which is a difficult thing to do with your family and friends.  Also the opportunity to make friends with someone who KNOWS what you are talking about, does not judge, and does not indulge in “pity parties” is probably one of the best self help treatments you can indulge yourself with. The ability to speak to empathetic persons in the same situation, albeit of varying severity, allows a little more objectivity.  It also allows you to see that people can and do function with Lupus.

Forget therapy groups, shopping, manicures, or massages. Get yourself a circle of Magical Mystical Lupus Friends, who can support, listen, advise, and empathise. They have been there and done that. And will not judge you for it. This is a truly heady experience, and to my mind should be listed as an approved Medicare Treatment.

Having a good support group will alter your mind set, help you accept Lupus and your treatments,  allow you to vent, set your perspective straight, and allow you to use your experiences with Lupus in a positive and empowering way, letting you out of the rabbit hole, and back to your (near) normal life.

A challenge..to write a ghost story in 5 minutes…the answer below

The Dying Room

In the tiny country town of (___________) the nearest hospital is 20kms up the road, which means for the elderly dying it can be difficult for spouses to visit.
There are no bus and train services as both towns are also dying. . Although old and picturesque, behind the quaint facades the buildings are slowly crumbling and the town services are being cut back. As in other old towns, the folks know each other and help out where and when they are able.
When someone is taken to the Local Hospital the flock of olds descend on the spouse and supply comfort, chat, and sustenance.
When said spouses partner is transferred to what they euphamistically call the dying room, then there is a flurry of slow motion support. Children and grandchildren are called to assist in transport to and from the hospital, and the visiting spouse has a constant escort of little greying men and women offering comfort or just company.
Bill (________) was slowly fading, not only in body, but in presence, and all His wife wished was be with him. She was blind and crippled and on the day he died she could not make her way to the Hospital.
On the day he was buried they said God cried tears in company with his Famliy.
Two years later Bill’s wife was in the dying room.

As the family came up the corridor she greeted every one of them by name, and commented on some aspect of their appearance. When the family looked askance at this she placed her hand on her chest and said
“Bill is here to take me home and he is telling me these things so I can remember you all as you are now, and not as you were before I lost my sight. This way I will be able to find you in your dying room wherever it may be. None of us need be alone in our passing as Bill was.”
With this she sighed deeply, clenched her hand tightly around nothing visible to the family, and passed.
On the day she was buried next to her husband in the church where she had played the organ, and sung in the choir for 60 years, the sun shone through onto her casket and threw rainbows in the church, illuminating the tears of her family and friends.The centuries old pine trees soughed their farewell with the same song that had sent her to sleep all her life in the cottage across the road.

.

A short piece about our beautiful climate…

Seasons

Seasons!

Summer comes
Cicadas sing, the Bellbirds call
Bushfires cast an awful pall
Brassy skies, clouds piled high,
Fat drops of rain through hot still air.

Autumn comes
Chainsaws sing and wood smoke curls
through glades of greys and greens and pearls.
Birds visit less and nights are cold,
Mists and fogs around us fold.

Winter comes
The frosts are here and cold winds hurl
cruel fingers into one and all.
No birds or blossoms to be seen,
Its winter cold and cruel and keen.

Spring comes
The mornings dawn with sun and light,
Birds singing loud in dawns first flight.
The smell of grass and blossom and gum,
A promise of summer stiil to come.

Any one who knows me well knows I love just driving and I love this country of ours!

Changing scenery as I drive Down the coast through mist wreathed ranges ..golden moss by the Old Putty Road, shoulders of rock, ferns and grass.

A wonderful canopy of damp dark forest overhanging all. A lovely little crystal stream hidden in a gully and covered with umbrellas of fern. later feathery blurs of silver grass fly by for miles, then tough red swords of grass next to dry and dying bush.

Dead and dying trees all still heart breakingly lovely, then further north stony acres for a hundred miles… Miles flying by and snow in drifts and shadow between Top OF The Mountain and Guyra…….Guyra’s main street an arcade of pines with remnant snow men and no remnant snow sculptors..all inside I hazard from the smoking chimneys .

A 4WD shiny new and parked, its occupants young men in Ski Suits throwing snowballs, as yet 1000 kms from from the snow fields and already playing.

A beautiful march of tall tree forest before Buladelah, and wide expanses of lake and shore, tiny houses miles from any where, all looking cold and dark in winter, but cool and inviiting in summer. Banksia scrub, with golden pillars of flower, after Forster, and vines tangled in all. Ti tree scrub, looking like brush fencing, and hovering Kites pausing then stooping to carry off some poor morsel for lunch.

Suicidal parrots on the road following the dandruff from the grain trucks, and getting drunk on the spills. King Parrots of Scarlet and Emerald, out of season and out of habitat but making a statement in the winter trees.
Drive north through trees and the corrugated road is striped with shadow, dizzying in its regularity.
Small towns with no one home..its saturday and all is closed. Grey and leaning, the houses look forlorn, the shops are vacant, the paint peels slowly down the drying walls, and fences webbed with spiders are shining in the sun.
Nearly home and up the range, wet and clean air rings with bellbird calls, and sun streams in long flashes between the mountain ranges, dizzying heights of rock threaten to fall, and the sun sets lemon and silver, with leaden clouds falling to the horizon, shot through with the silver.

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