SLE (or simply "lupus") is  connective tissue disease.  Lupus is a treatable, chronic, autoimmune,  inflammatory disease that can affect any organ in the body and in a pattern that varies greatly from person to person.  Lupus is characterized by autoantibodies.  SLE is a chronic illness, which means that the disease is lifelong. Autoimmune means there is a disorder of the immune system which cannot tell the difference between the person's own tissues and foreign tissues.  This conflict leads to inflammation (the normal body response to injury or infection) in various organs which causes the symptoms of lupus to appear.  If severe or untreated, this inflammation may cause organ damage and loss of function.  Autoantibodies, meaning antibodies directed against one's self, are involved in this process and are typical of SLE.



 

Learning to Walk with the Wolf

I first starting having joint problems as a teenager, and after a multiplicity of knee operations, I was left with bilateral chronic knee insufficiency, tendonitis, and osteoarthritis.  I was seen in a pain clinic here in Montreal, and in 1989 was given the following recommendations:

1)  Psychotherapy:  This patient must adjust to her "failed knees".    She must accept the limitation in physical activity imposed by her condition and change her behaviour accordingly.  (Little did they know how much!)

2)  Relaxation therapy

3)  Further TENS particularly self administered TENS.

4)  Prescribed pain medications, leg braces.

5)  Also she should obtain a light wheelchair for use in everyday activities around the house and out on outings.

Adapting to a life of chronic pain was not easy for me, or my family that was living with me.  We were met with daily frustrations and challenges that life with a chronic illness brings.  But we tried our best to continue the *life as normal* attitude, although not much about being in a wheelchair was normal.

I did manage to keep house, be a wife, mother, daughter, sister, and friend to many.  I had been a volunteer with the Girl Guides of Canada for twenty years and was able to keep up with my Guiding responsibilities, camps, administrative duties, etc.  It was a huge part of my life.  I also volunteered in my daughter's school library, and at many other community events.  I had learned to live within my new boundaries, but instead of giving anything up, I just adapted to doing things differently. I was totally independent again, and the only handicap that I was left with was the ignorance of society. It was a major adjustment but we had made it!

Then in October 1993, I was complaining of vague symptoms.  I was losing my hair, I was terribly fatigued, I would become achy and get a rash if I was in the sun.  I had an isolated case of pericarditis, and I was having many fevers of unexplained origin.  When complaining to my family doctor I was originally told to 'slow' down, as I was always burning the candle at both ends.  I sensed that there was more than that, though.

In January 1994 I had had "enough"!  I suddenly had pain in my arms that was severe enough to prevent me from being able to push my own wheelchair, and I was getting exhausted from the mildest tasks.  I was suffering from a moderate memory loss, and pleurisy.  I was sent to a Rheumotologist, and through exhaustive testing, I was diagnosed in March '94 with SLE, with a possibility of MCTD. (Mixed Connective Tissue Disease)

Since then my life has been one battle after another.  I have since been diagnosed with Fibromyalgia, also.  All of this makes living in my body difficult on good days, and unbearably horrendous on difficult days.  I have not yet experienced a remission but remain hopeful, as I do have friends with lupus that have.  (UPDATE: MY REMISSION see *note* below!) I have experienced many manifestations of this disease which have been treated with Plaquenil (anti-malarial), Prednisone (steroid), Imuran (immunosuppressant), amid many others.  I have suffered the double edge sword of using some of these drugs - a huge weight gain, weight loss, loss of bone density, etc.  But these drugs save lives.  Each day I  have to wonder, what next?  What will be the symptom of the day? or week? I think the worst thing is that everybody always tells you how *good* you look.  Not that I want to look sick, but somehow we all need validation for our pain. I have been severely limited in my activities of daily living.  I used to be a very active, vital part of my community, active in my children's activities, and had many interests of my own, my first love being Guiding. I am terribly photosensitive so activities that were outdoors, and under uncovered fluorescent lights were now out of the question. I could not go out in the sun without becoming deathly ill.   My world just kept getting smaller and smaller.  As I was able to do less, I was shut out of my friends lives, not intentionally, but because of the limitations living with this illness put on me and my family.  Then came depression, that is common with chronic illness.  Living with the wolf has cost me dearly.  I have lost my  health,  my marriage, my friends, and my income.  I have gone from being the care giver, to the care taker.  On good days, it's all I can do to be "Mom", and on bad days, my children take care of me. I do not have the strength to work right now, but maybe someday. My quality of life isn't what it used to be, but I have a new respect for it.  It is now April 1998.
The internet opened my life in one way, as it was closing so quickly in others.  I have an appreciation and love  for those who have stuck by me, and tried to make my pain more bearable.   I have made new friends, at home and within our lupus family here on the net. I have created a safe place to retreat to, in my forestgreen world with my family and fur babies. I take such pleasure in watching my pets, my family, the sunrise, the sunset, and will always have a wondrous respect for nature and the wolf.  My greatest pleasure has always been and will always be camping, especially at Rollins Pond - my time spent visiting "heaven" on earth.  I am at home in the forest...I find peace there.
Even through the depression, I look forward to a new day, with all the hopes and dreams and possibilities it has to offer. I have been given the gift of tomorrow.   With the help of my family and friends, I will see my dreams come true. I will  battle the fears, the pain, the obstacles, knowing that I am not alone, where limits only exist in my mind, and knowing above all that

Index /Forestgreen Living With Lupus//Montreal Gazette Story 1998/Montreal Gazette Story 1999 /My Miracles/My Photo Journey - My Many Faces of Lupus/My Strength - My Family/ Comfort and Hope/Lupus Support and Other Health Links

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