Sandra's Story

MY NAME IS SANDRA AND THIS IS MY STORY OF LIVING WITH LUPUS.
I was diagnosed with discoid Lupus in early 2000,
Since that day my health has drastically changed,
I truly believe I have suffered with it for years before any thing appeared on my face. I have always been extremely tired, where I will sleep when ever I could, also after a holiday, I thought I had sun burn on my ears but it took months for this to disappear.
And then in 1999 to have this legion appear on my nose, the same as on my ears, is Discoid Lupus.
My health, it seems is getting gradually worse as the years go by. I have been tested 4 times for SYSTEMIC LUPUS all negative,
I have Arthritis in my hands, neck, hips, knees and feet. I have had headaches for over 20 yrs, my muscles constantly ache, extreme fatigue and sleeplessness, red lace rash on my arms and legs, pain around my kidneys, memory problems, chest pain, easily bruising, sensitive to sun light, fingers and palms turning red, pins and needles in my arms and legs, IBS symptoms, lack of concentration, dizziness and oral, nasal and mouth ulcers.
And yet I don’t have SYSTEMIC LUPUS.
I’ve accused of being an alcoholic because of some of the symptoms I have, I’ve now been told it could be FIBROMYALGIA,
Which I believe is a condition that doe’s not exist, it is used by DR’S when they don’t know what’s wrong with you, I’ve been told by 3 different people connected to the health care system the same thing.
I feel that I am being branded a liar, and it’s all in my head.
I have people say you look so healthy, there’s nothing wrong with you. Just because you can’t see it doe’s not mean there’s nothing wrong.
Live a month in my shoes and you would know what it is like to live with this disease.
I work part time, but with all my heart I wish I could work full time, but with my Lupus even working part time is so difficult, and strength zapping that I cannot even muster the energy to cook or clean my house for my family.
This disease not only effects my life, but that of my husband and 2 kids.
The reason I am writing this is because,
I asked my DR if I could claim AISH or disability (in Alberta).
And he said NO, because I did not have a positive test result for SLE, and even if I did , it would not be worth applying because they would refuse me because I was not sick enough. And that my husband earned to much, if he earned to much I would not be working part time, now would I.
My point is that there are people with SLE, not able to work and they are being refused benefits, They are on a low income from there spouse. And would love to be able to have some sort of income coming in to their house hold, just to be able to afford little extras for their kids.
They are being refused time after time,
THE DISABILITY SYSTEM NEEDS TO BE SERIOUSLY LOOKED AT,
And that when we apply, our pain and suffering is taken seriously,
and that some of us, honestly and truly cannot work because we are so sick all the time, and is impossible to get out of bed with pain and fatigue.
I AM PLEADING WITH YOU FROM THE BOTTOM OF MY HEART,
PLEASE, PLEASE LOOK INTO AND UP GRADE THE DISABILITY SYSTEM,
THERE ARE TO MANY PEOPLE CLAIMING DISABILITY THAT COULD VERY EASILY WORK,
AND PEOPLE LIKE US WITH LUPUS THAT ARE FALLING THROUGH THE CRACKS, THAT NEED THIS EXTRA MONEY, BUT ARE BEING REFUSED.
THIS NEEDS TO BE SORTED FOR THE WHOLE OF CANADA, IT IS A COUNTRYWIDE PROBLEM.
WIFE, MOTHER AND LUPUS SUFFER.
SANDRA WAITE