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Rheumatoid - Arthritis Or Auto Immune Disease
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Out of the blue, it comes uninvited - and you were'nt doin' anything wrong at the time..... nothing dangerous. Just 'living'.
 
Please read away, to see how a life can be turned into knots by the unexpected arrival of an Auto-Immune Disease. How are we to deal with this?
 
Do I have the answers to healing? I'm afraid not, but I can give advice so you won't become a frayed knot.
 
.........
 
 
 
Rheumatoid Arthritis Is Not Osteo Arthritis.
 
Arthritis literally means 'inflamed joints'.
 
This is the main point of the confusion between these two different afflictions. Rheumatoid Disease affects the whole body via a faulty immune system. 

 
The words 'Rheumatoid arthritis' cause a complete misunderstanding of the illness - The only major connection is inflamed joints.So this site is about Rheumatoid Disease, its effects and treatments.
Please read on.
 
 
 
This page is under constant construction. Imageas am I.

Hi there,

I'm Em, I'm a happy 52 year old mother of two beautiful daughters and two equally lovely English sons in law, a large growing son with an excellent husband of 30 years. We've got 5 'perfection personified' grandchildren and live in a region known for stunning Beaches, Forests, Lakes, and gorgeous Countryside.

That's all the important stuff - now to the point of the site.

I was diagnosed at 28 with RD (Yes, technically it is Rheumatoid Disease.). My life made a U turn and somehow along the line of time - so did my fingers and other necessary working parts....all kinds of bits and pieces began to move uncomfortably from their comfy original niches.

I want you to know....whether you're a carer or a 'sufferer' (I must think of a new title for us/the afflicted), that this is a bump in the road - a spanner in the works, a bee in the bonnet, a fly in the ointment, a g-glitch in the motherboard. (That sounds a bit Trekky but I think it's computer talk) --- you get my point.

Some mornings admittedly it's more like a truck has mysteriously driven over your slumbering unaware body and left you feeling like  ...well...like a truck hit you.

Waking in the morning to find that you can't move as you are seized in a kind of arms across the chest 'obituary pose'. Your fingers suspiciously look more like immovable sausages than digits. I know I don't sleepwalk, so who came and clobbered me with a cricket bat during the night? And maybe the extreme game of backgammon was a tad too much physical exertion. 

You cannot stand as your knees are the size of rockmelons; your feet are balloons with elephantine ankles with 26 bones that are screaming at you...'do not walk on me'. You wonder but can't recall the dancing, bowling, bungey jumping, the boogie or the nightlife that must have caused these injuries. Nope. You were not sleepdancing, (or 'sleep bungeying' as the case may be).

I realize this can be a tricky subject. There are many differing views on how to meet/fight/treat this disease and how to incorporate your life to comfortably (figuratively speaking) fit around it.

We all cope so very differently, the reason being - in my opinion, our personalities, upbringings, lifestyles and genetics are all varied, therefore so are our responses and reactions to life altering circumstances.

Before we get into business, please know that you can do this, you can take it on. The pain is enough to drive you 'round the bend, but there is so much more to life than having pain rule you.

You will learn as you go to adjust to changes. Sometimes with grace, sometimes - without grace. I'm sure there is an art involved but I can only explain my own failed and refined methods. 

You will find an escape,

a passable contentment,

an appreciation for those who support you,

a way,

a healthy respect for your own courage,

a gratitude for life

and admiration for those who use their full potential,

a lifeline

mostly;

a belief system .... you will, because you will need all the help you can get. 

 

The best advice from the get go.....

Take interest and joy in the small things.

Accept the changes that you have no control over.

Expect the best.

Do not become introverted you will be led into bitterness. Bitterness and resentment can cause pain. Just don't...it's a killer.

 

This intro doesn't really do any justice to my whole story, but I reckon the only way to know someone is to communicate......so that's my plan via this little website thingy.

Keep Hope.

Okay, try.

I will be adding anecdotes and hopefully constructive, positive ways to live with this hiccup in the game of life

 

I didn't want to start on a gloomy morose note. Mainly because I believe the advances in the medical community over recent years have changed and grown open to treatments that can give genuine results and real solutions. 

 

 


My credentials are not medical, although I have found that I am   as experienced as a few of the doctors I have been to; ( I would not make this statement lightly) after the day to day slug and the changing moods of this disorder over 24 years of  living an in depth, full body experience with R.D.

 

 

 

 

My Creepy looking Left hand drawn by
mylefthandpic.jpg
my equally creepy right hand

ImageHave you been Diagnosed?

 

A simple blood test to find your ESR (Eryth Sedimentary Rate) and Rheumatoid Factor can be requested by your Doctor.

 

Please see a doctor ASAP for a chance to nip this invasive disability in the bud. New methods of treatment and layering of medications seem to have had good results in slowing the progress of RA.

My Dog friend plaiting my hair
trinadogplaiting.jpg
after titanium joint replacement

I am a snake lover, they're easily held and cute
chickennme.jpg
pets, my funny hands are a handy resting place .

 
Rest REst RESt REST  REST  REST REST
 
The old adage 'Move it or lose it' does NOT apply to Rheumatoid Disease.

 

Osteo Arthritis is a drying of the joints. Though painful, it is not overly destructive. You may see evidence of slight deviation, particulary in the Distal Inter Phalangea (DIP joint) of the hand. Some wear and tear repair can be necessary.  In the case of Osteo, movement lubricates and assists in motion.

 

RD is an auto immune disease that has a genetically faulty immune system. Sometimes described as being blind to its hosts tissue.

It attacks cartilage, bone, ligaments and tendons as it travels through the synovium fluid that is swelling the affected joints. RD eats away like a Pacman. It causes atrophied muscle and can result in increasing weakness and malformations.

 

When RD is in what is considered a 'Flare up' you must completely rest your weight bearing joints (ie. hips, ankles, knees.) for at least 3 weeks. This means bed rest, no walking or exertion. As RD is an auto-immune system disease, this gives the body the opportunity to slow down the destructive process.  When the pain and inflamation settles you must excercise within range of given motion. ie. till it hurts, no further.

 

 

 

 

Current topics can be found in Navigate - Just follow the appropriate link.

 

 

 

•  Soon to come  •

 

 

ImageDisability Act and Human Rights

ImageUseful Tools for the highly disabled 
ImageSupport and Carers

Image    Dealing with loss

Image    Dealing with 'The Looks' and Questions

 X-rays usually show soft tissue swelling, erosion of cartilage and joint space narrowing. This, of course results eventually in changes. Changes you must deal with. They come so gradually sometimes you don't notice. Then one day you meet someone new and the look of momentary shock on their face reminds you.

It's suddenly apparent you should explain yourself, but embarassing for them. Just make it easy on them okay? They have no idea usually.

I used to say "A crocodile bit me." or "There was trouble at t' mill." :)

My favourite reply regarding my hands, at the moment is "I broke them".

 

Image          Finding your own pace

Image         Finding your Life again

 

Accolades, Sincere Thanks and Kudos

The two best Doctors in the galaxy, universe, time and space have been constant, understanding, considerate and thoughtful. They have led me through this time with excellent help and relentless care.

Dr. S. Hunter and Dr R. Newman.

An honourable mention for Dr. B.White, the best Orthopaedic surgeon on the east coast .... and the universe.

Thank you.

 

 

 

Please feel free to contact me if you have any corrections, questions or experiences to add.

LilBookofCalm@yahoo.com.au

 

    Image        Thank you for reading

Always remember you're unique, just like everyone else.