Living With Lupus
April 1, 1996 my life was changed drastically and permanently. I had been suffering for a few months with literally no energy and then my toes started to turn purple and get ulcers and lesions on them … I then started to lose my toe nails due to a lack of circulation … after numerous tests and doctor visits I was sent to a rheumatologist ...who diagnosed me with Systemic Lupus. When I asked the doctor what this meant her answer was “Stop burning the candle at both ends”, I felt this was a fairly vague answer so from that moment on I decided it was up to me to learn as much about this disease as I could. In a nutshell this is what I learned.
Lori Ries, Eston
Lupus is a chronic disease with a variety of symptoms caused by inflammation in the body. It belongs to a family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes and scleroderma. Systemic Lupus Erythematosus is the most common form, and it is considered to be a complex condition that can target any tissue or organ of the body. Approximately one in two thousand people are affected in Canada. Anyone can get lupus – men, women and children. In lupus, the immune system (our defence system) is unable to tell the difference between intruders and the body’s own tissue so in attempting to do its job it attacks parts of the body which in turn causes inflammation and creates the symptoms of lupus. It occurs most often in women of childbearing years. Because the immune system is not fully understood by science, the cause of lupus remains unknown. It is important to know that lupus, while a very serious condition, can usually be treated and managed. Along with my primary diagnosis of lupus I have been diagnosed with several secondary autoimmune illnesses which is common, namely, Sjogren’s syndrome, ulcerative colitis, vasculitis and thrombocytopenia.
Lupus can target any of the body’s tissues which makes it hard to diagnose. According to the Lpus Foundation of America, lupus is often called the disease of a thousand faces, it takes the average person nearly six years from the first time they notice lupus symptoms to be diagnosed. Some of the more common symptoms a person with lupus may experience are joint pain, butterfly red rash across the upper cheeks and bridge of the nose, extreme fatigue, scaly skin rash, small ulcers inside of the moth or nose, edema, hair loss, seizures, chest pain and shortness of breath. Being a chronic illness, lupus often appears in cycles consisting of flares (severe acute symptoms), chronic phase and remission.
Lupus is most treated with corticosteroids (prednisone) and anti malarial drugs (Plaquenil or hydroxychloroquine) as a first line of attack. Many people seeking treatment for lupus are also prescribed immunosuppressive drugs or cytotoxic therapy. Some of the medications used are the exact same drugs used in the treatment of cancer and can have severe side effects.
What have I learned from living day in and day out with this disease? I have learned how very important it is to listen to your body. Your body will always let you know when you need something you just have to learn to listen – now when I feel pain or exhaustion I slow down...I know what a flare up feels like and rather than waiting until I am really sick I try to deal with symptoms and the disease as it rears its head. Now when I am not feeling well you just won’t see me – I am not “hiding” as I once felt I was doing but rather I am looking after myself. I have also learned to make my health a priority...by not working full time – which I felt guilty about for a lot of years I am able to limit the amount of flare-ups and the severity of the disease and cut back on the amount of medication I take in a year. There is no possible way an employer would be able to grant me the necessary sick time to cover the sick days/appointments/tests/surgeries that have come along with dealing with the disease. I have a care team which helps to keep my disease “under control”, originally anchored by Dr. Stewart Holmes who also became a very dear friend and now managed by our NP Karen Serfas; they include a rheumatologist, a hematologist, a neurologist, urologist, gynecologist, vascular surgeon, ophthalmologist, endocrinologist, physiotherapist, chiropractor, social worker, athletic therapist, and masseuse to name a few. I also find that rest and less stress play a large role in managing the disease…
I have also learned what is profoundly important in life...material possessions and a higher standard of living or time well spent with family and friends? We all know the answer to that question.
I think it is important for all of us to be kind to ourselves...I spent so many years angry at myself and feeling guilty and weak and less than...We all need a sense of purpose –whether it is from work or volunteering or giving back to your community or being a parent – it doesn’t matter what you do but if you feel like you are living your life with purpose the world will be better. We are often harder on ourselves than anyone else will ever be...we all need to give ourselves a hug now and then. I still struggle with one area and that is asking for and acknowledging that I need help...but most of my friends don’t wait for me to ask...how blessed am I?
I have had a lot of people in my life comment on my strength but started, look at is as strength as much as I consider it survival...trust me there are days when I would love to put my head down and cry but I am afraid that if I started I wouldn’t be able to stop so I choose instead to keep my head up and look forward and “walk on”. I am a LUPUS WARRIOR.
My disease will always be a part of my life but rather than looking at it as my enemy I have learned to look at it as my lifelong companion … perhaps in the future a cure will be found but the fact remains that this disease has been a type of blessing in my life teaching me far more than it has taken away. I can honestly say, Lupus as much as I have hated it and fought it, has made me a better person.
I would like to close with a quote by Maya Angelou which I found in a book my mother gave me.
“You may not control all the events that happen to you, but you can decide not to be reduced by them. Try to be a rainbow in someone’s cloud. Do not complain. Make every effort to change things you do not like. If you cannot make a change, change the way you have been thinking. You might find a new solution.”
I am an area contact for the Lupus Saskatchewan. I encourage anyone who wants to know more about lupus or needs support after a diagnosis to reach out.
https://www.lupuscanada.org/
https://www.lupus.org
http://lupussk.com/