Tuesday, November 29, 2011

HAVE FAITH.....







HAVE FAITH


Life has not been easy for you
The lines upon your face, they show
They clearly tell me of the pain
Through which you’ve had to go

Let go of all the pain
You need to release it all
For keeping your feelings inwards
Will not help you at all

Situations can be hard
You cannot do it all
Alone is too difficult
To try to face it all

Put your trust
In the ones you most love
And in return they will give
Their everlasting love

Stay calm and happy
For me, this is easy to say
I can watch and listen
Yet all I can do is pray

Forgive yourself
You have done your very best
Leave it all to God
He will help you with the rest

Have all the faith
Prayers are with you
Believe more in you
This is all you need to do

Whatever the outcome
Whatever the result
It will be meant to be
Just remember all you’ve got

Have faith in people
Although they can hurt a lot
The world is not all bad
Your happiness means a lot

Sometimes we need to learn
Hard lessons they can be
But nothing happens for no reason
 To you or to me…………………..

                                                                                                                                                                                                © Jayde Dow....                                                                                                                                                                                                                                                                                                                                                                                February 1995                                                                                                                                                                                                                  

LIVING WITH PAIN....








LIVING WITH PAIN....



My health is deteriorating....

I only wish I knew why....

This is happening to me....

It often makes me cry....

.. ..

The pain in my organs and muscles....

Is getting worse and worse....

It is really becoming....

A very big curse....

.. ..

I get so frustrated....

Over the things I can't do....

I really wish I could do....

What I used to be able to do....

.. ..

I guess I find it so hard....

To live in such pain....

It really gets me down....

To live it over and over again....

.. ..

I know I can't give up....

For to give in is a waste....

Of the precious time I have....

Of this I must make the most....

.. ..

Most days it is hard....

To live with the pain....

No-one can take it away....

I have tried over and over again....

.. ..

I get so tired so quickly....

Yet force myself to do on....

Otherwise I will give up....

And this would be wrong....

.. ..

I hate other people....

Seeing me like this....

And wish I could return....

To a sweet life of bliss....

.. ..

I don't know what else....

I can do except fight....

And not give in to it all....

And give up on my life....

.. ..

I know that I definitely....

Do not want to give up....

Yet sometimes it hurts....

Me so very very much....

.. ..

There is nothing anyone can do....

Yet I wish that they could....

And I know that if it were possible....

They most definitely would....

.. ..

I appreciate the true friends ....

That I have and I treasure....

Just as I always will....

Forever and ever....

.. ..

I may never know why....

I must go through all of this....

I guess there's a reason....

In this I must believe....

.. ..

Nothing happens for no reason....

For this I've been told....

I guess one day I will find out....

And the mystery will be solved....

.. ..

                                                                       

© Jayde.Dow written 1998





HURTING.......







HURTING






I know what it is like
To be hurt again and again
No matter how many times
It never lessens the pain

"  A Perfect World"
I wish there could be
But it doesn't seem possible
For you or for me

Everyone is fighting over
Insignifigant things
It is not necessary
Only sadness it brings

It is time we all changed
And learnt to get along
For that is the only way
Together, we can be strong

Emotional issues
Are close to the heart
People use these issues
To tear others apart

People should realise
The harm they can do
Not just physically
But mentally too

It is a pain you can't see
But it is so very real
To the person who feels it
Their sanity you can steal

A world without hate
Without fear or strife
That would have to be
The most perfect life

Let us all join together
And try to get along
For the sake of our future
Everyone needs to be strong

It takes more courage
To try to make things work
Instead of being so negative
Together, we CAN make it work

People should realize
They are destroying each other
With their violence and hate
Only enemies do they make

To love someone else
You first need to love you!
This is something not
Many people can do

© Jayde.Dow


Monday, November 28, 2011

MY LITTLE GOLDEN BOX...









There are some things in this life that we can only feel, we can not see nor touch them not kiss them and not hold them. These are the things we lock in our little golden box. They're the things we share only with the ones that we love most of all ones that we treasure the most because to show them our little golden box makes it so

They are our LOVE, FAITH and IDEAS even though we can not see them we can feel them deep inside our soul. The love a mum has for a child, the faith one has for another, and the ideas we have that may seem foolish these are the things we guard from the world that would have them smashed.

i invite you to see in my box in my heart because though i do not 'know' you i love you because you are you and choose not to be anyone else

to the things i know to be true
i know that my children love me so much i could never know just how much
i know that the lord loves me also in a way i could never understand
i know that i love everyone in this world as much as i can
i know that when i pray my prayers are heard and if i offer up a prayer from the depths of my heart i will be helped
i know that i am loved by people i don't know
i know i love my family and friends  too
i know that i try my best to be the best person i can be

I KNOW THERE IS A GOD AND HE LOVES ME BECAUSE I KNOW THESE THINGS


© 2010 Jayde Dow...


MY NAME IS FIBROMYALGIA.....





Hi, My Name is Fibromyalgia
by Jayde Dow
Hi, My Name is Fibro ... Fibromyalgia, and I live with her. Funny, living isn't exactly the correct word. I am her. She just won't admit it -- yet, but she will in time. She will.

Oh, the joy of watching her struggle through a very good day. True, she may call it a "bad" day, but she doesn't realize how hard I work to make those days special. I start when I cause her to feel tired, but not just a "worked hard and earned it" tired, rather a complete exhaustion that makes her cry for relief. Then I add the spice of muscles-that-cramp and knot. The most fun for me to watch is when the tops of her feet cramp and pull her toes in odd directions. She screams sometimes when that happens. Oh, the joy. Have you ever seen someone whose two fingers pop out of place and slide under the palm of the hand? I've watched her force her fingers back into place, watched in glee.

I jab her fibro spots with a burning pain, and a sheet that brushes against her skin brings more suffering. I've heard her say, "I wish I could just scrape my skin off. It hurts so bad," as she smooths lotion over her legs and arms, seeks relief, a way to sooth the needles of torment.


A trip to the doctor's office thrills me so much. Every time we're there, the nurse slaps on the blood pressure cuff and pumps away. I so enjoy watching my "friend" squirm and grit her teeth as the pressure increases. The agony radiates over the skin of her arm and to the bone. Often tears form in her eyes, and she tries so hard to be brave, not to whimper. However, I'm stronger than she is, and I win, as usual. The nurse says she's so sorry, but she has no clue as to the torture she causes.


The rheumatologist's office is different, though. They use wrist blood pressure cuffs so that they won't cause more pain for fibro sufferers. She doesn't dread visiting that doctor, especially since the lab tech doesn't have a problem finding a vein. He doesn't cause more than a slight prick, either, not as most people do that draw blood for tests. She no longer has several painful sticks, and her arms are not covered by bruises any more. All my fun spoiled.


But what's the most fun for me -- memory games. I do so enjoy the memory glitches I cause her when a sudden blank erupts in her brain. *sigh* Too bad things return when I forget to keep the stress level high.


I don't understand why she keeps fighting me. I'm going to win, especially with the army beside me: RA, Lupus, and my good friend polyarthryalgia, spondylosis, multiple organ damage Yes, she and I are inseparable, whether she admits it or not.

I WILL KEEP ON FIGHTING AND THANK YOU FOR FIGHTING WITH ME!!


© 2010 Jayde Dow...


Sunday, November 27, 2011

FRIENDSHIP.. A POEM I WROTE...





Friendship can be a happy thing
True friends are very rare
A lot of people pretend
But only you know who really cares

Friendship can be love
Friendship can be pain
Some friends we really want
And some friends tend to leave us in the rain

Especially when we need them
They turn their backs on us
These are the ones
We know we cannot trust

Those who are there
Totally with you forever
Are very rare people
And deserve to be loved

These people will not harm you
Or ever put you down
They are always there
Especially when you need them

There is no cost for true friendship
It is given free for you
Especially for you!!
For being the person that you are

True friends are
Precious like GOLD,
They are one treasure
Which cannot be bought or sold

Don’t forget that in return
One day they might need your help
And you will be there for them
Should that time come

Look after one another
This is what it’s all about
You will never know when you need each other
But it will happen,
Without a doubt

Remember how precious
True friendship can be
Noone can do without it
Neither you nor me!!!

© Jayde Dow....


LIVING WITH LUPUS.....






In this day and age, the diagnosis of an illness such as lupus is not a death sentence. In fact, it is far from it. Most people with lupus have to adjust their lifestyles in some way but can expect to enjoy an almost normal life.

The key to living a good life with lupus is knowing about the condition, understanding what your limitations are and making the absolute most of what you have. So read on, learn about the condition and if there is anything you are unsure about, ask your doctor or contact your closest lupus organisation.

Links to:
- What is Lupus?
- What causes Lupus?
- Who is most often affected?
- Are all cases of Lupus the same?
- The signs and symptoms of Lupus
- How does Lupus affect the body?
- Diagnosing Lupus
- Laboratory tests
- Treating Lupus
- Lupus in different groups
- Tips for living with lupus - Help yourself to a full life
- Commonly asked questions
- Where can I go for further information and support
- The history of Lupus


What is Lupus?

Lupus is an autoimmune disease. A normal healthy immune system recognises and destroys foreign objects like bacteria and viruses. With autoimmune diseases, however, the immune system starts to attack objects that are not foreign. Hence the term "auto" (self) "immune."

With lupus, the immune system produces an excess of proteins called antibodies that attach themselves to various structures in the body. The accumulation of these antibodies in the tissues can cause inflammation, damage and pain


What causes Lupus?
Despite many years of research, the cause of lupus is still not known. Scientists believe there are several things that may trigger the formation of the antibodies, including genetic, hormonal and environmental factors. Some of the possible triggers include:

- Hormones (females between the age of 15 and 45 are most commonly affected)
- Certain medications
- Dietary factors
- Viruses and bacteria
- Stress
- Genetics
- Pregnancy
- Exposure to UV light

Who is most often affected?

Although lupus can affect anybody, 90% of lupus patients are women. Of these, 90% develop the condition during their reproductive years.

Lupus affects people the world over, although there is a higher incidence in certain regions of the world and in certain ethnic groups. For example, in the United States, African Americans, Latinos and Asians are more commonly affected than Caucasians. Lupus is more common in the Philippines and China than in Japan.



Are all cases of Lupus the same?

There are two main types of lupus:

- Systemic lupus erythematosus (SLE) – almost any organ or system of the body can be affected in this form of lupus. In most patients, only the skin and joints are affected (this is called minor organ threatening lupus). In   others, SLE also affects the kidneys, lungs, heart, blood vessels and/or brain (this is major organ-threatening lupus).

- Discoid lupus (also known as chronic cutaneous lupus erythematosus) –   usually appears as a red scaly rash on sun-exposed areas such as the face, scalp, arms, legs or trunk. Discoid lupus is generally a milder disease than SLE. It is usually diagnosed by its appearance and by skin biopsy. A small number of people with discoid lupus will develop SLE. However, most patients with discoid lupus have their condition confined to the skin only.

Other milder forms of lupus sometimes occur. In subacute cutaneous lupus, skin rashes, sun sensitivity and joint aches are the main symptoms.

Drug-induced lupus is usually a transient form that develops as a reaction to certain medications. It clears up when the medications are ceased.

 

The signs and symptoms of Lupus

Lupus is a very variable condition. While it has many characteristic symptoms, most patients will never experience all of them. Similarly, no two patients experience identical symptoms.

The severity of the disease also varies. In some patients symptoms appear suddenly and are relatively severe, while in others the disease remains at a low level for several years before diagnosis. For most patients, however, the frightening descriptions of life-threatening disease in medical textbooks never occur, and the condition remains mild and readily manageable.

Lupus runs an unpredictable course. For some people, symptoms subside after treatment of the initial acute attack. For others, periods of "remission" are punctuated by brief "flare-ups" of disease.

Initial symptoms

Several symptoms are seen in the initial stages of lupus. These include:
           - Fatigue, weakness and lethargy
           - Joint pain or swelling (experienced by about half of patients)
           - Skin rashes (around one in five patients)
           - Fever



How does Lupus affect the body?
 
Lupus can affect many parts of the body. The most common symptoms are described below. In addition, most patients feel tired or weak.

Skin Almost any type of skin rash may occur with lupus, affecting around two-thirds of patients. The characteristic lupus "butterfly" rash of the cheeks and nose is seen in about one-third of patients, while one in five patients experience mouth sores. Hives and altered skin colour (a lightening or darkening of the skin in places) can also occur. One-third of patients experience Raynaud’s phenomenon, where their fingers turn white then bluish on exposure to stress, cold or vibration.
Joints Joint pain (also known as arthralgia) and inflammation (arthritis) are common features of lupus. Nine out of 10 patients experience some form of joint pain, most commonly occurring in the hands, wrists and feet. Joint pain - which is often accompanied by stiffness and/or swelling - is most severe in the morning and eases later in the day.
Hair During active disease, significant hair loss, or alopecia, can occur. Usually the loss is only temporary and can be treated with a variety of remedies. Certain lupus medications, such as anti-malarial drugs and corticosteroids, may encourage hair growth.
Tendons When tendons are inflamed, they can tighten, causing fingers to pull into abnormal positions such as "trigger fingers". This is, however, an unusual problem.
Muscles Muscle ache, known technically as myalgia, may occur in up to two-thirds of patients. The muscles between the elbow and neck, the knee and hip are most frequently involved. Muscle inflammation or swelling is less common, but requires treatment, as unlike myalgia, it can lead to permanent muscle weakness.
Lungs A thin lining called the pleura surrounds the lungs. Inflammation of this lining is called pleuritis, a condition that affects around one-half of lupus patients at some stage during their life. This causes chest pain when deep breaths are taken.
Heart Inflammation of the sac surrounding the heart, the pericardium, is called pericarditis and affects about a quarter of those with lupus. The main symptom of pericarditis is chest pain below the breastbone that is often relieved by bending forward.
Kidney A condition called lupus nephritis sometimes develops when the delicate filtering mechanisms of the kidney, the nephrons, become inflamed.
Blood Lupus can affect the cells of the blood system and the components of the system that are involved in blood clotting. The most common complaint is anaemia, or too few red blood cells in the bloodstream. As red blood cells carry oxygen to tissues, patients with anaemia will often feel tired. Drops in the levels of white blood cells (defenders against infection) and platelets (which help the blood to clot) are also seen in some patients.
Immune system A condition known as lymphadenopathy, or swollen lymph nodes (most people know lymph nodes as "glands") can sometimes occur.
Brain and nervous system Inflammation of the blood vessels of the brain can cause a variety of symptoms, including depression, seizures and visual disturbances.

 

Diagnosing Lupus

Lupus is not an easy condition to diagnose. Symptoms are often similar to other illnesses and tend to come and go. Diagnosis is usually made on the basis of clinical symptoms and on the presence of certain antibodies in the blood. There are 11 symptoms or signs that help distinguish SLE from other conditions. Four or more of the symptoms described in the table below, not necessarily occurring at the same time, indicate SLE.

Symptoms that indicate SLE

Symptom

Description

Malar rash Rash over the cheeks
Discoid rash Scaly red or raised rash
Photosensitivity Reaction to sunlight – skin rashes that develop or become worse on exposure to sunlight
Ulcers Nose or mouth ulcers
Arthritis Inflammation of two or more joints, but the inflammation does not damage the joint
Serositis Inflammation of the lining of the heart or lungs
Renal disorder Excess protein or cells in the urine
Neurological disorder Seizures and/or abnormal behaviour when there are no other likely causes
Haematological disorder Lower numbers of red or white blood cells or blood platelets (these disorders are known as anaemia, leukopenia and thrombocytopenia, respectively)
Immunological disorder Testing positive in laboratory tests for one or more antibodies that are distinctive of lupus (eg anti-DNA antibodies, anti-phospholipid antibodies, anti-Sm)
Anti-nuclear antibody Testing positive in laboratory tests for a protein known as the "anti-nuclear antibody", a protein indicative of lupus.


Laboratory tests

A doctor will carry out a number of laboratory tests to help diagnose lupus. These include blood and urine tests (looking for urinary protein and red blood cells).

In the anti-nuclear antibody (ANA) test a sample of blood is taken and tested to see if it has anti-nuclear antibodies – antibodies that react against the nucleus of human cells.

While a positive ANA test points to lupus (virtually all people with SLE test positive), it is not diagnostic of lupus. A positive ANA test is seen in several other conditions, such as rheumatoid arthritis and some viral diseases. Sometimes even perfectly healthy people will be positive for ANA. If the ANA test is positive, the doctor will take into account whether the patient has other symptoms of lupus before diagnosing the condition. ANA-negative lupus is rare but not unheard of – patients in this situation will usually undergo more tests before their lupus is confirmed.

The anti-deoxyribonucleic acid (DNA) antibody test is similar to the ANA test. In this test, the antibodies tested for are those that react against DNA, the genetic material contained in the nucleus of human cells. It is more specific for lupus than the ANA test, as only rarely do people with other conditions test positive for anti-DNA antibodies. The drawback of this test is that the antibodies are only found in two-thirds of lupus patients.

Further blood tests may be carried out to see whether the levels of complement proteins in the blood are lowered. The presence of anti-Sm (sometimes called the extractable nuclear antigen or ENA) is also diagnostic of lupus.

 

Treating Lupus

The aim of treating lupus is to reduce inflammation in tissues and bring under control the abnormalities in the immune system that cause the inflammation. Treatment also enables the patient to live a fuller life. As no two patients are alike, treatment is tailored to the individual, taking account of the severity of the disease and the organs involved. There are four main groups of drugs used to treat lupus.

- Non-steroidal anti-inflammatory drugs

Used for pain relief and inflammatory conditions such as rheumatoid arthritis, NSAIDs are very useful for many lupus patients, Aspirin, ibuprofen and naproxin are examples of commonly used non-steroidal anti-inflammatory drugs (NSAIDs).
These drugs vary in their effectiveness a drug that one patient finds very effective may be of little or no use to another. This means several NSAIDs may have to be tried before a suitable one is found.
NSAIDs are used to relieve the fevers, headaches, muscle aches, malaise and arthritis that can accompany lupus. However, they are not disease-modifying drugs – they will not put lupus into remission or alter the underlying immune process.

The main side effect of NSAIDs is stomach irritation that can lead to ulcers. A new class of medications related to traditional NSAIDs, called COX-2 inhibitors, reduces this particular side effect.

- Anti-malarial drugs

You may well ask what malaria has to do with lupus? Nothing as it happens, except that many years ago it was fortuitously discovered that anti-malarial drugs reduced lupus symptoms in soldiers at war. Since then anti-malarial drugs have been used widely to treat lupus.
These drugs are particularly effective when the skin and joints are involved.
Two anti-malarial drugs are used in Australia to treat lupus – hydroxychloroquine and chloroquine.
Anti-malarial drugs such as hydroxychloroquine help bring lupus under control in many body systems. Skin rashes, mouth ulcers and hair loss improve in the majority of patients. Joint swelling and aching decreases.
Anti-malarial drugs have few side effects, although it may take several weeks before they start working. The most common side effect is nausea.
It is recommended that patients have their eyes examined every six months, as anti-malarial drugs, and in particular chloroquine, sometimes damage the eye.

- Corticosteroids

Corticosteroids are hormones, now produced synthetically, that have very similar effects to the steroids produced by our bodies. At their naturally low levels, they control a number of processes in our body. When used medicinally at higher doses, corticosteroids dampen inflammation and are very effective at relieving the symptoms of active lupus.

The dose of corticosteroids must be regulated to maximise benefit and minimise side effects. For patients with severe disease, they are the drugs of choice and are given at high doses. Moderate doses are taken during severe flare-ups of non-major organ-threatening disease. Patients with chronic, mild lupus receive low doses and are usually switched to another disease-modifying therapy that has fewer side effects.

At moderate to high doses, taken for weeks to months, corticosteroids can cause a variety of unwanted side effects such as heart palpitations, agitation, weight gain, changes in facial appearance, rapid heart rate and sleeplessness. Side effects from long term therapy (over a period of months to years) are more serious and include raised blood pressure, diabetes, increased risk of infection, and osteoporosis. Over time, corticosteroid doses can be reduced, but patients need to be "weaned" off the drug so that their own body can learn to produce the substance again. Prednisolone is an example of a commonly used corticosteroid.
- Immunosuppressants

As their name suggests, immunosuppressants suppress or dampen the immune system. In a disease that is caused by an over-active immune system, they are a logical and very effective choice. Commonly used immunosuppressants are cyclophosphamide and methotrexate.

Immunosuppressants can have serious side effects and for this reason they are usually reserved for severe cases of lupus. They are generally used when serious major organ-threatening disease is present and steroids alone are not enough to control the disease. They are also used when patients cannot tolerate high doses of steroids. For this reason, they are often referred to as "steroid-sparing agents", as they spare the patient the potentially toxic effects of long term steroid treatment.

Patients receiving immunosuppressants are monitored closely for such side effects as anaemia, lowered white blood cell counts and hair loss. They are also at an increased risk of infection and possibly cancer.

- Prognosis

In this day and age, with early detection and effective treatment the prognosis for lupus patients is not one of doom and gloom. The prognosis depends on a lot of things, and varies from patient to patient.
Most patients with milder forms of lupus can expect to live a normal life span. This includes subacute cutaneous lupus and SLE that is not major organ-threatening. For major organ-threatening lupus, life expectancy depends on the patient’s race, where they live (and whether they have access to good medical care), their age, their genes, and most of all how severe the disease is. Lupus is fatal in only a small percentage of cases.
- Lupus flares

Many patients experience lupus "flares" – periods where the symptoms of lupus return. Unfortunately, there is no way of knowing how long such flares will last or how severe they will be.
What triggers these flares is not entirely clear, and probably differs from person to person. Almost universally, however, emotional and lifestyle-related stresses are found to have at least some role in lupus flares. Sunlight, an infection, certain medications or even pregnancy may cause disease flares in some people. During these times it is particularly important that patients take good care of themselves.
- Lupus and pregnancy

As most women affected by lupus are of child-bearing age, it is natural that they will question whether they can become pregnant and successfully give birth to a healthy baby. The good news is that in the majority of cases, there is no reason why a woman with lupus cannot have children.
Conception

Before considering pregnancy it is important that patients talk to their doctor and are informed of any potential risks for themselves and the baby. It is preferable for lupus to be in remission and to ensure that any medication being taken will not adversely affect the pregnancy.
Lupus does not usually lower fertility, but sometimes women with lupus may have an antibody in their blood that increases the risk of miscarriage. Any woman with a history of more than two unexplained miscarriages should be tested for this antibody (the "anticardiolipin antibody"), as treatments to enable a successful pregnancy are available.


Q & A

Will lupus flare up during pregnancy or after the birth? Whether or not lupus will flare up during pregnancy cannot be predicted. However, lupus flares during pregnancy are far less likely if the illness has been quiet for the six months leading up to conception. If it does flare, it is likely to be mild and in the first trimester. After this, the foetus begins to produce hormones of its own that can help to keep the mother’s disease under control.
In the first weeks after birth new mothers may experience lupus flares but this can be controlled with corticosteroids.
Will lupus medications harm the foetus? Many medications are harmful to a developing foetus. Corticosteroids, however, are safe medications to use during pregnancy.
Will the baby be affected by lupus? A very small number of babies are born with what is known as "neonatal lupus". This is a type of lupus that is only seen when they are first born and does not persist past infancy. Whether or not a baby will develop this condition depends on whether the mother has certain antibodies in her bloodstream – if she does not, there is no risk. If she does, the risk is low but she will need to be monitored more closely during the pregnancy. In most babies neonatal lupus will clear up independently but in some it will require medical intervention.
Can babies be breast-fed? Babies can be breast-fed, although it is advisable to switch to formula three months after the birth. A breast-feeding mother cannot take most lupus medications because of the possibility they may harm the baby. The longer she breast-feeds the longer she is at risk of experiencing a disease flare.
Are my children at increased risk of lupus? While genetic factors play a role in increasing the risk of developing lupus, this illness is only "passed on" to 5-10% of successive generations. This highlights the fact that while genes are important, they do not fully explain why lupus appears in a certain individual and whether or not your children will develop lupus.
   

Lupus in different groups

Children

Although lupus is most common in young women, it is not unheard of in children. Most children are diagnosed around puberty, although there are rare cases in children younger than 5 years.
Symptoms in childhood lupus are very similar to adult lupus although they are usually more serious. For this reason, children are generally given more aggressive treatment that aims to control the disease before it involves major organs.

Men

Lupus is much more rare in men than women (occurring at a rate of approximately one man for every nine women) but does occur. Unlike women, who tend to develop the disease between the ages of 15 and 45 years, there is no distinct "risk period" where men are more likely to present with lupus. Men tend to experience slightly different symptoms that are often more severe than in women.
Older age groups

Few people develop lupus in old age and it is generally a much milder disease. Those who have had lupus for some time will usually find that their lupus calms down, with only a few symptoms such as photosensitivity and joint pain persisting.
 

Tips for living with lupus - Help yourself to a full life

Just because you have lupus does not mean you should stop living your life. Do your best to remain on top of the disease – a bit of careful planning and thought will go a long way.

Some tips for staying on top of lupus:

Tips


Make sure you get plenty of rest.
Make an effort to do some exercise this will help prevent muscle weakness and fatigue – but don’t overdo it.
Listen to your body if you feel fatigued, take a rest. This may mean taking daytime naps or restructuring your schedule.
Try to avoid becoming anxious or stressed, if you can’t avoid stressful situations, learn how to de-stress. Try yoga, meditation, walking, a relaxing bath or talk to your family, friends or support group about your anxiety.
Remember the sun can trigger flare-ups avoid excessive exposure to the sun and always cover up. Use maximum strength sunblock that protects against UVA and UVB rays
Avoid contact with people who have an infection potential sources of infection such as large crowds (buses, trains and concerts), children and babies.
Find out as much about lupus as you can this will help take away the fear of the unknown
Eat well from each food group if you are on a special diet, make sure you stick to it. Your doctor is trying to help you – so follow his or her instructions and advice.
Keep a list of your symptoms and any questions you might have for your doctor.
Always keep a record of your medications. inform your doctor regularly
Always take your medications as you have been instructed.
Visit your doctor regularly particularly if you feel as though the disease may be flaring up.
Certain things can trigger lupus see if you can work out common triggers for your symptoms. That way you can avoid them next time.
Do not smoking smoking will lower your health so try to quit
Do not over-exert yourself physically or emotionally.
You are not alone there are many other people in your situation. A support group is only a phone call away.


Commonly asked questions

Q & A

Why me? It is a good question and one that many people will ask. The short answer is – we don’t know. Scientists are working hard to find out why some people develop lupus while others do not. The answer may be the key to warding off the disease before it takes hold.
Is lupus genetic? There is good evidence that genetics play a role in deciding who will develop lupus. But just how large a role that is differs from person to person. Some people are more susceptible, genetically, to developing the disease. Whether or not they actually develop lupus may depend on their lifestyle or which viruses or medications they come into contact with.
Can other people ‘catch’ my lupus? Lupus is NOT infectious. There is no need for you to quarantine yourself.
Can I take oral contraceptives (the pill)? You will need to discuss this with your doctor, but in many women with lupus, oral contraceptives can be used without problems.
Do certain things trigger lupus flares? While there are no universally accepted triggers, you may find that sun exposure, certain foods, medications or activities affect your condition. Emotional stress is commonly implicated in lupus flares. It may be useful to keep a note of the things you did or ate prior to a lupus flare – this may help you to identify any triggers.
Am I going to have lupus for life? At present there is no "cure" for lupus, but there is effective medication that will bring the disease under control – often permanently. As you grow older, it is likely that the disease will settle down.
Is there a special diet I should follow? No, but you should eat a healthy, nutritious and well-balanced diet and try to maintain ideal body weight. If you know that a particular food triggers your lupus, it is obviously wise to avoid it.

 

Where can I go for further information and support

If you have any questions about lupus or your medication, you should ask your doctor. In addition, there are a number of lupus associations and support groups across Australia that can provide invaluable help to lupus patients.

These organisations provide support and information to patients and their families, as well as promote understanding and awareness of the condition in the community. Further research and development in lupus and its treatment is funded by the efforts of these organisations.

Contact your nearest Australian Lupus Association or support group at the address listed below:


Lupus Association of NSW Inc PO Box 89
North Ryde NSW 1670

Tel 02 9878 6055
Fax 02 9878 6049

info@lupusnsw.org.au
www.lupusnsw.org.au

Freecall (NSW Country & Interstate )
1800 802 088
Lupus Australia, Qld Inc P.O. Box 974
Kenmore QLD 4069

Tel 07 3878 9553
Fax 07 3878 9557

mail@lupus.com.au
www.lupus.com.au
Lupus Group of WA PO Box X2213
Perth WA 6847

Tel 08 9224 3144
Fax 08 9224 3144

lupus@wanet.com.au
www.lupuswa.com.au
Lupus Association of Tasmania PO Box 639
Launceston TAS 7250

Tel 03 6331 9940

lupustas@bigpond.net.au
www.users.bigpond.net.au/lupustas
Scleroderma/Lupus Support Society Inc Scleroderma/Lupus Support Society Inc.
PO Box 373
Warners Bay NSW 2282
Ph. 0249 214095
Fax 0249 855347
Janine.Furner@hnehealth.nsw.gov.au
www.haps.nsw.gov.au
   
 

The history of Lupus

- Lupus through the ages
Lupus was first described way back in the time of Hippocrates in Ancient Greece.

- The history of lupus

"Lupus" means "wolf" in Latin. There are at least two explanations why the word "lupus" was chosen to describe the disease we now know as systemic lupus erythematosus.

One explanation is that lupus was so named because the common butterfly rash seen on the cheeks and nose of many lupus patients is similar to the facial markings of a wolf. An alternative explanation relates to the early use of the word "lupus" to describe skin ulcers. In the sixteenth century, certain skin ulcers were compared to a hungry wolf eating the sufferer’s flesh.

In the 1800s doctors named another disease involving skin lesions "lupus erythematosus". These lesions were not ulcers but rather were red regions where the skin was thinner than normal.

When doctors discovered that a bacterium was responsible for many of the skin ulcers that were called lupus and that these ulcers cleared up with antibiotic treatment, they realised that lupus erythematosus was a separate condition. It was not until 1872 that doctors realised lupus erythematosus affected parts of the body other than the skin. The condition was given the name lupus erythematosus disseminatus, and the first of the symptoms were documented.

Proudly sponsored by an educational grant from Sanofi-Synthelabo


HEALTH.... CHRONIC FATIGUE SYNDROME.... (CFS)





Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is an illness characterised by exhaustion and many other symptoms. It can strike at any age and can affect children as well as adults. Victoria alone could have at least 35,000 people who suffer from ME/CFS.

Myalgic Encephalomyelitis means pain in the muscles and inflammation in the brain and spinal cord. Onset of ME/CFS may be sudden or slow and may follow viral infections, toxic exposure, trauma or other events. There can be various levels of severity of this condition. Some people can go to work or can manage moderate levels of activity, while others are housebound or bedridden.

The course of illness is difficult to predict. Some people recover quite well over a long time. Some people remain about the same, while some suffer relapses and others get worse.

A variety of symptoms
The symptoms for which ME/CFS is best known are persistent weakness and exhaustion. The distinguishing feature of the condition is a type of exhaustion known as post-exertional malaise or ‘payback’. This includes abnormal exhaustion after any form of exertion and a worsening of other symptoms. The response may be delayed, perhaps beginning after 24 hours.

It can take an unusually long time to recover from this type of exhaustion. Activities that were once taken for granted now take an enormous toll on a person’s health. For example, your normal walk, which caused no fatigue before, is followed by unusual tiredness that takes longer than usual to go away.

Other symptoms include:
Cognitive (thinking and memory-related) difficulties and other neurological problems
Disrupted sleep
Pain
A drop in blood pressure upon standing (orthostatic hypotension)
Increased heart rate upon standing (orthostatic tachycardia)
Palpitations
Shortness of breath with exertion
Muscle twitching and tingling
Allergies and/or sensitivities to light, odours, touch, sound, foods, chemicals and medications
Nausea
Gastrointestinal and urinary problems
Sore throat, tender lymph nodes and a flu-like feeling
Marked weight change – extreme loss or gain
Inability to cope with temperature changes.
Symptoms may vary even over a short time.

The cause is unknown
A single cause for ME/CFS and its ongoing effects has not been found, but research indicates problems in several areas that may be related to this condition:
Immune, neurological and hormonal responses
Viral or other infections
Blood pressure, circulatory and cardiac abnormalities
Digestive tract disturbances
Genetic factors
Biochemical abnormalities.
Without a known cause or cure, prevention is impossible.

No diagnostic test is available
Currently there is no single test to accurately diagnose ME/CFS. A diagnosis is made by excluding all other illnesses after six months of continuing symptoms. However, while routine medical tests may be in the normal range, additional tests may show abnormalities in many people with ME/CFS. These tests are generally done by doctors who specialise in managing this condition.

Impact of ME/CFS
Disability means that some people with ME/CFS are too ill to work, study or socialise. A person’s finances may also be affected. A lack of community understanding of the difference between normal tiredness and the extreme exhaustion of ME/CFS, and the absence of a specific diagnostic test, add to the person’s difficulties and often prevent a proper diagnosis.

The effects of this condition on a person’s life and a lack of support and recognition for what they are experiencing can lead to depression in some people with ME/CFS.

Where to get help
Your doctor
ME/CFS Australia (Victoria) Tel. (03) 9791 3100 – for information, support groups, self-help courses and information on doctors and specialists who can support people with ME/CFS
Things to remember
The most common symptom of ME/CFS is an overwhelming, persistent lack of energy and difficulty in recovering from exertion.
The cause is unknown but research is discovering a large range of physical abnormalities in those affected.
There is no cure but some treatments may provide relief to some people with ME/CFS.
It is important to educate yourself, obtain support and manage the illness with the help of a doctor experienced in managing this condition.
Listen to your body and keep activity within your limits to avoid relapse.


A poem I wrote- Depression





I wrote this about living with Chronic Illness and the Depression that goes along with it at times in our 'flares' of our illnesses.. I wanted to share it with you.. Hugs and Blessings Jayde Dow


DEPRESSION






Let me tell you of depression
And the anxiety it brings
It is a pain we can't see
Created by so many things

People hurt people
Sweet revenge it is called
But it all just creates
A bitter end to it all

People get depressed
For all sorts of reasons
It is always happening
From season to season

Some people get depressed
Because they don't have enough
And others because
They find that times are too tough

Some people have it all
The yachts and the mansions
The cars and the money
Yet no love creates their depression

Society creates depression
Psychiatrists try to fix
But you never seem to fix it all
Always little bits you miss

A famous statement
You'll Bounce Back!
But every time it happens
The bounce tends to lack

A ball will bounce
Only so many times
And after a while
It loses its shine

I guess we will never know
Why we go through such pain
Is there an end to it all??
We just have to keep trying again!!


©Jayde Dow

Friday, November 25, 2011

Weeks Gone By.........










My Children went missing, their father took them away for a ten week period when they were young….. I have always expressed myself better with poetry than anything else so I tend to write a lot… This is a poem I wrote when they had been missing for seven long weeks.. It was the longest ten weeks of my life…..
Thankfully my children were found by Federal Police… I know so many are not that lucky… my heart goes out to you….



WEEKS GONE BY







Seven long weeks gone by
And still no word
No-one to tell me
Nothing I haven't already heard

I wish I did
But I still don't know why
All of this had to happen
I wish I knew where you were

Papa only needed to say
That he wanted to move
And where he was going
And then you I would not lose

I waited and waited
For any telephone call
To hope it was someone
With some news of you all

So far that has not happened
And I wish it would soon
Not seeing you all
Is breaking my heart in two

I know that I will see you
Of that I'm sure
How long it will take
Is not my decision to make

I have tried to find you
Both of us have driven the streets
In the hope of hearing
Your voices or the eight little feet

I miss you more and more
As each day goes by
And not a day has gone by
Where I haven't sat and cried

I wish I just knew
If you were alright
That is all I want
I don't want all of this fight

I have to fight this
In the hope of seeing you all
The rejoiceful day I do
Will take away all the pain

I don't know what Papa
Has said to you
But I am trying my hardest
To find you all

I will never give up
No matter how long it takes
To find my boys all
Alive, safe and well

I look at your photographs
I look at your toys
They are the things
Of my four beautiful boys

It is hard to fight
The tears that constantly come
Sometimes I can't anymore
Straight down my face they run

I honestly hope you are happy
Your happiness is what I want
But I also want to hold you
And be the mother to the boys I've got

I have to believe that
An end has to come soon
Police and Welfare all helping me
Trying to find all of you

Throughout my own life
I have been through alot
But I never dreamed someone
Would take away all  I've got

The hardest part of all of this to
Understand would have to be
That I don't know why Papa
Had to do all of this to me

Mum is still here
And still loving you
The four children
She gave birth to

No one can take those
Wonderful memories away
Not even the rain and clouds
On a winters' day

I pray and pray
That soon you'll be found
I also pray that I can
Always have you around

                                                           
© Jayde.Dow

written 19th of February 1995


Sunday, November 20, 2011

My Story

I am writing this to tell you a bit about me and my life, maybe it will help some to understand my world through my eyes… I am putting my heart on my sleeve here so please be gentle... I have emotions just like you do.... I am telling you this to help you realize that I do truly understand as I have been there and still am....... *UPDATED VERSION** November 2011

I think I would be safe in saying that all of us have been through some form of pain throughout our years…… Whether it be physical, psychological, disabilities of many different proportions, disappointment, grief, loneliness and the list could go on and on.. However, everything that has happened to me has made me a stronger person!

My life began on the 20th day of June 1967. Unknown to me, I was about to embark on a journey like no other. Born 11 weeks prematurely I was left in the hospital where I was born, here in Perth, Western Australia. My biological parents did not want me, yet neither were they willing to give me up for adoption. So I was quickly placed under the ‘care and protection’ of the Department of Family and Children’s Services. I was an orphan, placed in an orphanage and I was to be a ‘foster child’……
I think I would be safe in saying that all of us have been through some form of pain throughout our years…… Whether it be physical, psychological, disabilities of many different proportions, disappointment, grief, loneliness and the list could go on and on.. However, everything that has happened to me has made me a stronger person!


I was very lucky and blessed at 22 months old to be put into a foster- home with beautiful parents. They are my parents in my eyes! Some children I met weren’t so lucky. I will be eternally grateful that I was so well loved and taken as their own child. I was not an only child but as I got older it seemed like I was……


Part of my story begins with constant unexplained illnesses from birth. I spent a lot of time in and out of the hospital and nursed back to health by mum and dad. I have fought Lupus since birth, it is an autoimmune disease which has come very close to taking my life on numerous occasions. At the time it badly affected my respiratory system causing bronchial pneumonia. I did not find out until later that I had this disease and it would be expected to take my life by the age of 20, which was what I was told by the specialist who diagnosed the condition. I am thankful that that was not the case. So little was known about the illness, lots of questions but no answers…. All I knew was that I got sick very easily and a lot and had a lot of operations for problems over the years. I have had every part of my body, internally, which is not a vital organ removed for cancer and cysts….. I am grateful to have had such caring medical team to help me through…


For some reason, unknown to me, I have no memories of being younger than 10 years of age. I only know what I have been told by my family. I know that there has to be a reason for this but it has never really been important to me. Although there are times I wonder but I have so many beautiful years which I CAN remember! They are the ones I hold close to me always… My mum and I travelled all over Australia together and enjoyed every minute of it. I helped my mum through nervous breakdowns and we got through it!! Unfortunately my mum passed away when I was 17 years of age, she was just 35. I know that there were better things meant for her!! 



I have fought through sexual abuse from about 14 years of age. I felt I had no one to talk to, I had been threatened if I told I would be taken away from my family and I had no idea what to say anyway.. It was around this time which my mum was going through her nervous breakdowns and I couldn’t tell her about it because I though she might get sicker, so for right or for wrong I kept it to myself for many years.. That was my decision to make.
I went through more than my share of violent relationships, just as so many of us have. I have managed to come out the other side, maybe a little more ‘nervous’ than I would have otherwise have been but I got here!!!



I am 44 years of age and have had lupus since birth. I spent the best part of the first five years of my life in and out of hospital for respiratory problems including bronchial pneumonia. At the time lupus was not really known about and I was never tested for it.. I have suffered with mouth ulcers and coldsores all my life, they get so bad at times all I can do is drink through a straw and it still hurts my mouth.. With the lupus went my appetite so I have always had a battle with trying to gain weight. I have always been very underweight for my age and height when I was growing up. Even now I am underweight but that is due to the intolerance I have to foods, especially when I am in a flare. I drink subsitute drinks (hospital formula) to try not to lose too much weight. It is also due to multiple organ damage.


My parents could never work out what was wrong with me as I always got very sick very easily. If there was a cold or flu going around I would get it and it would put me straight back in the hospital. It was then discovered by a blood specialist, who tested me for everything known to man, that I have lupus. There was not really a lot known about it when I was diagnosed with it. So it was just told to my parents that I would probably get sick quite a lot. I have had a lot of surgeries in my life and had everything that is not a vital organ removed. I am thankfully still in remission of cancer which I got at 25 years of age.


I have had 3 miscarriages which my doctors put down to the lupus. I have since found out that they are a sign of lupus. I have three beautiful healthy boys whom I think the absolute world of and am thankful they are males, although lupus can affect males it is alot rarer. My daughter passed away at three months old from SIDS. I know there were better things meant for her.. RIP my Angel.. 




I went through a period in my life where my lupus seemed to lie dormant for approximately ten years. It was not until I got Cancer that my lupus came out of remission also. The radiotherapy and chemotherapy did not help me, sure they put the cancer into remission but made my lupus worse, unfotunately. I have always found it hard to talk about myself for the fear of people saying that I am feeling sorry for myself or want attention. Nothing could be further from the truth, as anyone who knows me knows all too well. I never want pity, just understanding, a a want to help other with these debilitating diseases..


Now my liver, pancreas, spleen, heart and brain are all affected to different degrees. My liver is constantly enlarged and I am on the urgent donor list, and have been for sometime now but dialysis and trasnfusions are helping me through most of the time.....and I have pancreatitis more often than not but I still try to stay as positive as I can. That and pray a lot!!


I have just recently been told that I need a liver and pancreas transplant as having had lupus for so long, like any auto-immune disease, it wears down the organs over a period of time. I also need to have my right kidney removed and my spleen, however, that will not be done as I have too many organs affected by the lupus. I have only recently been told that I have been removed from the transplant list. I would be lying if I said this wasn't hard on me, emotionally and physically as the pain in my organs and muscles is always there.......... I am eternally grateful to my mum ( may she rest in peace) who passed away when she was only 35 years of age from undetected breast cancer, that she got me into the church and helped me through some extremely difficult and painful experiences, also with a lot of prayers. 


I got fibro about 10 years or so ago, yes I ache all over at times and I hate the disease but for the most part I have learned to live with it, I am not making light of fibro because I know how very painful it is but to me the lupus is more painful. I don't know why I guess I am able to shut out the pain of the fibro better or something, I am not sure.. I also have rheumatoid arthritis and degenerative disc disease, spondylosis and polyarthryalgia, both affecting the spine. I have recently had a second spinal surgery and one a year ago. Both have now failed and I am having an MRI done again very soon to see what else can be done for me as the spinal pain is making it extremely difficult to walk, lying in bed is mostly the best I can get at the moment, but hopefully something can be done very soon.. My neurosurgeon is waiting for my health to improve a little before doing another. My spine is crumbling and the vertebrae are compressing the nerves, so I need further surgery to overcome this. A bone scan done approximately 12 months ago showed that I have the bones of an 80 year old woman. I am 44 yrs if age...


I have now also been diagnosed with COPD (chronic obstructive pulmonary disease).. My respiratory system is not coping with things too well


Of course there is more to my story but this is what I wish to share with you for now.


I am a very positive person and look for the good in everything, and if I can't find it then I just look deeper. However, I am no stranger to the depression we go through and have my moments.......Thank you for reading this. I find that the group I started  Chronic Illness Survivors, has helpedme in so many different ways, it has also helped me to bring out things that would have otherwise have stayed 'locked-up' inside of me...... I love people and love being here on Facebook as it is the only real friends I have due to my illnesses.... Many people find it too hard to cope with illness which is why I started this group, so that people would have a 'safe place' to be able to speak of their feelings etc without fear of retribution, or being told they are complaining......I truly appreciate your friendship,. I hope I am able to help you too


With love, hugs and blessings Jayde