How do I feel today?

I have a story to tell about why you need to constantly educate yourself about your disease, research it and document EVERYTHING! I started out trusting doctors and have since been totally let down by the Medical System.

I have spent the last 10 years knowing I had a positive lupus Antibody test in 2001 whilst  experiencing possibly the worst flare on my life. I was swollen, sore, covered in rashes of all sorts, including in the scalp, and my face puffed up like a balloon, until I could no longer SEE through the slits that had become my eyes.

However, I changed GPs in 2006, and this was my Great Lupus Undoing.

Following my Heart Attack in 2006 the Cardiologist referred me to A Rheumatology Clinic at a Major Hospital in Brisbane. After Numerous visits, and only returning high  ANAs, extreme Rheumatoid Factors, high C Reactive Protein readings and high Alkaline phosphatase readings, but no anti DS DNA, the Rheumatologist’s quote was “You have something Autoimmune happening but we don’t know what. Come back if you get sick”

Hello! I WAS sick.’

I was also  losing feeling and control in my legs and arms. My GP referred me for testing and the Private Neurologist confirmed a Neuropathy. However the Rheumatologist had previously answered my inability to turn the car key, hold things, or  open things with “You should see an Occupational Therapist”. This was for me the last straw. I KNEW  how to use aids to make life easier. I wanted ANSWERS to both my neurological and All body disorder.

Following a series of episodes of blindness I was referred to a Neurologist at the same hospital. He was useless!! Ultimately given my fathers history I demanded a genetic test. This came back positive for hereditary Neuropathy with Pressure Palsies, meaning I have only the maternal copy of the pMp22 gene on Chromosome 17, so my body  manufactures incomplete myelin, the protection on the the nerves. This causes progressive numbness and pressure damage in the nerves. SO, still no explanation for my other Neuro symptoms, blindness, balance problems,cognitive issues, white matter lesions on MRI etc.

I asked for a referral to an Immunologist as my problems were not being resolved, and it was obvious something was going on. I asked him for the results of the Gene testing. He of course had not read them. Once I asked the question it was a different story.

Finally from being considered a depressed menopausal hypochondriac I was taken seriously on the other matters.

I got copies of every blood test I had ever had, and gave them to the hospital. However no one even READ them.So I fed those to the Immunologist too.

Suddenly I now have a Re-diagnosis. Mixed Connective Tissue Disease. This is a Lupus like Disease with many shared feature of lupus, however without the proof of the Specific Lupus antibodies. He believes I have Lupus, but have not yet been lucky (??) enough to have the antibodies at time of blood tests.

SO how do I feel today?

Vindicated!! After years of steering people in the right direction, making sure they HAD the information to hand to assist in diagnosis, and Spoon Feeding them the information  I am on TREATMENT!
I am not too pleased to be told I have Vasculitis, Sjorgrens Syndrome, and Reynauds Disease as secondary illnesses, and I shudder to think of the damage that has been done by lack of treatment previously, but now I can at least see a little light at the end of the tunnel.

I think the most frustrating things are:

Once a doctor, (Any doctor) says you do not have a certain disease it is the only thing they see.in your file and they fail to listen or investigate.

If you get a label as a hypochondriac, or research your own symptoms because they won’t you are again labelled.
I don’t know if my Immunologist was having a good day when I saw him last week, but if I had not once again asked him to LOOK at my bloods for the last 10 years, WITH all the Lupus/MCTD markers highlighted I would still be untreated.

Perseverance has finally paid off but it should NEVER have got to this Stage. The Medical Profession has a long, long way to go.

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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.

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.

The exceptional journey of “Lupie Bear”.

Friday, 10 June 2011When 11 year old Brooke  gave her inspiring talk to Lupus family and friends at The recent LAQ High Tea there wasn’t a dry eye in the house. Her courage and her commitment to living a “normal” life was a lesson to all of us.Then at the end of this talk Brooke was presented with a very special gift, a hand crafted Cobbearie Orange Lupus Bear made by our own Ellie Skuse. By this stage the sniffles were very audible, and a number of people were visibly effected. The joy on Brookes face gives me some idea of why Ellie does all she does with her Cobbearie Bears. However it barely touches the surface of Ellies reason for  her Lovingly Handcrafted Gift Bears.I was curious about Ellies Bearmaking so I asked her to tell me her story. Here it is, and I hope you find it as inspirational as I did. By the end of Ellies story, and having seen a photo of one of her beautiful Cobbearie Bears, Angel, getting a well deserved hug by her new “mummie” I was in fact truly amazed at the love and sharing this special lady contributes every day.

Ellie said that when she was very ill in 2002 she was unable to work. Housebound and bored, she decided to make hand crafted unique Teddy Bears. With her first few Bears, according to Ellie,  there was many a disaster to start with. Starting from scratch, with no  Bear Makers willing to pass on or share their skills,and out in the “Bush” with no classes in Bear Crafting it was very much a steep learning curve.

When Her husband Pat could get her to Town Ellie would go to the Library and search all she could find on Bear Crafting.

Ellie said she  finally achieved some reasonable little bears. She also discovered in the process that she had been crafting her Bears in one of the most difficult materials to start with – acrylic furs. Had she started with Mohair she said her Bear Crafting would have been so much easier.

Ellie learnt of a Bear Show being held in Brisbane, and her husband Pat drove her down to it. At this stage Ellie was still unable to drive herself.

At this “Bear Fair” Ellie met Gerry from Gerry Bears, and was told to continue just as she was, as her bear making was truly unique! Gerry advised Ellie to attend a couple of different classes to make herself comfortable with her skills .

Ellie and Pat decided to call her venture Cobbearie.  Cob after their property Cobbers Homestead (Cobber meaning mate and open to all) with bearie added to the end. Two or more Bears are called a Hug, appropriate given how, why and where Ellies Bears end up.

Cobbearie Collectables were born! Ellie cannot count the  bears that have been made since then.

Her Cobbearie Babies are made for adopting by very special and precious people, as each one is purpose made to suit its new Owner and Hugging “Cobber”.

Cobbearies has made and donated bears to be raffled for numerous charities over the years including United Church, Artist Cottage, Artist Village, Lions Club, and Wild Life Carers.

Ellies Bears are also donated for raffles to raise money for Angel Flight, our own special Air Rescue Service in Australia. Ellie and Cobbearie Bears organised one of the biggest Bear Conventions ever to be held in the South Burnett Region, raising several thousands of Dollars for the Wondia Lions Club.

These Cobbearie Bears are now also made for Children that suffer from Crouzon (Ellie has a beautiful daughter with Crouzons) and Ellie is now making Cobbearies for Lupus. Brookes orange “Lupie Bear” is one of these.

When required, Ellie donates her time to Special Needs People, and has tutored Special Needs People iin sewing, painting and bear making.

Delving deeper, I found she had owned a craft shop for a number of years, but due to ill health had to give it up. She now has a studio at home and when well enough, holds Bear Crafting Classes. Ellie does not charge for this, but does it for the love of the bear making and to keep a traditional craft alive. She also teaches sewing, knitting and crochet, in addition to teaching  how to design and draft Bears.

Cobbearie Bears are often requested by people overseas, and Ellies Koala Cobbearies are uniquely different to those purchased in shops. Ellie currently has two Koala Cobbearies on the go for special people in England and America.

It takes Ellie several days, and  sometimes weeks to create a bear as the use of her hands is compromised by Lupus and Rheumatoid Arthritis, making using a needle painfully difficult.

Her  greatest delight is seeing the face of the people who receive her Bears. The joy it brings them is a reward in itself.

As she is a sentimentalist who believes the good things in life are the delights and joy you make in creating and giving  something special, Ellie is a truly joyous person, because she gives all of herself every day.

A Person with Lupus who contributes to such an extent deserves our thanks. There are many many more just like Ellie out there, giving of themselves, without strings attached, day after day, when others may want to curl up and hide. These Lupies are an inspiration. Elllie Skuse, I salute you.