It is snowing right now outside, covering my
immediate world in a blanket of white that mutes the sounds of life. How I came to be living in the northeastern
portion of Arizona I am not sure. I grew
up near the ocean. The sound smell of surging tides is where my body and
soul find an unearthly connection to peace. Only by its
absence does the heart and soul really know what nourishes its existence.
I
outrun the wolf…
My journey began after the birth of my daughter and
the natural hormone changes brought about by pregnancy, childbirth, and nursing
a baby. I have been reflecting as 2012
draws to a close how the disease of Lupus has changed my physical being with
its internal assault on my brain and central nervous system. Those aberrations have
occurred in chorus with the changes to a person’s framework known as a
skeleton. Like many allopathic remedies,
the drugs that stop disease processes often cause irreversible harm. Prednisone
sucks the strength from bone but it has also given me life. Do I
feel as though I suffer from a lack of bone density? Not really, though that perception may change
once I fracture more than a toe or finger.
Treatment for Lupus Cerebritis ranges from massive
doses of Prednisone, its liquid cousin Solumedrol, Methotrexate, and various
forms of chemotherapy. A filled prescription
for Azathioprine takes up residence in my medicine cabinet intact. Toxic poisons to make me well – oh the
irony! Do not get me wrong, I am
grateful for being the “guinea pig” when it comes to how to stop an unseen
monster creeping through the recesses of my body and brain. I guess the evidence of Lupus Cerebritis can
be seen. The scarring in my brain is the
evidence according to the radiologists that read the results of any MRI.
I dance with the wolf…
From there to here is a story and this is the “Reader’s
Digest Condensed” version of this life.
I have not written in this blog for a few months, mainly because I came
to another turning point in Lisa’s life with Lupus. Suffice it to say that the first six months of
this year only showed me that I would need to find a greater understanding of
what wellness means. More importantly I
was shown that the willingness to live and embrace life requires
sacrifice. I guess that I somehow felt I
might have some input in the form that sacrifice might take. Silly me!
Learning to dance is a process, and first one must learn how to
walk. Learning to walk means an
individual must learn to stand, and the only way that I could balance was to
realize the wealth of family and friend there to lean on when I need them.
I
run with the wolf…
I was diagnosed with Systemic Lupus or SLE in
1983. I was told many people live a
fairly productive life after diagnosis. Some
spend their life on a couch. Since that discussion
with my firs rheumatologist I have buried my father, finished a degree and
gradate with honors, divorced after fifteen years, started my
own business, watch my baby grow
into a terrific young woman, swam with
sharks off the Great Barrier Reef, been published in the National Gallery of
Writing, and work with some amazingly talented people. I am pretty sure you get the picture.
Not bad for someone who was told by doctors in 1995
that I would likely be dead within ten years after my diagnosis of Lupus with
brain and central nervous system involvement?
I outran the wolf...
Happy to prove those medical professionals wrong this time.
What is Lupus?
General features of Lupus
It should be made clear
that although Lupus is a complicated illness, capable of affecting almost every
part of the body, the majority of patients suffer from only a small number of
the long list of features described.
Few have heard of lupus,
yet worldwide it is more common than leukaemia, muscular dystrophy and multiple
sclerosis. Some 30,000 people have the disease in the UK, of whom 90% are
women. However, men and young children can also have lupus.
Lupus is a condition
whereby the body's defence mechanism goes into overdrive and starts to attack
itself. The symptoms are many and varied and the illness seems to mimic other
diseases. This gives rise to difficulty in diagnosis and the condition can be
overlooked, sometimes for years, unless the GP or consultant is alert to lupus.
The name
"lupus" comes from the Latin meaning wolf and refers to the
erythematous red ulcerations on the face. Systemic Lupus Erythematosus (SLE)
did not acquire its name until the middle of the 19th century. Lupus is a
chronic autoimmune disease, characterised by exacerbations and remissions.
Although there is no cure, this does not mean it cannot be
controlled. Sometimes, patients find in their forties and fifties that their
symptoms settle and they can come off all therapy. Although people of any age
can suffer from lupus, women outnumber men by nine to one. It is a disease of
young women, the peak age being 15 to 40 years.
LUPUS IS NOT CONTAGIOUS
. . . but can be triggered:
- at puberty
- after childbirth
- through sunlight
- during the menopause
- after viral infection
- as a result of trauma
- after a prolonged course of medication
Features
The most common features
are:
- skin rashes
- joint pains
- profound fatigue
Other features include:
- heart and lungs
- involvement of the central nervous system
- anaemia
- hair loss
- kidney disease
- mouth and nasal ulcers
- eye problems
- gastrointestinal disorders
- vasculitis
It is important that
patients should only read literature about Lupus that is not more than five
years old. This is because, until
recently, Lupus was widely regarded by doctors as a dreaded disease,
progressing to kidney disease and usually fatal.
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