Monday, April 18, 2016
Illness Should Come With A Disclaimer
Illness comes in many forms and severities. No two patients, even those with with the same diagnosis, are exactly alike. Illness is different for everyone; what my doctor tells me may be the exact opposite of what your doctor tells you. The treatment your on may not have worked wonders for me, and the treatment I am on may not have worked wonders for you. Everyone's body is different, leading to different accompanying illnesses, different symptoms, and most importantly a different prognosis.
This blogs agenda is not to simply share awareness on an illness, but to share my journey with illness. Your story may not be my story -- or maybe it is. Just because I speak mostly of Scleroderma doesn't mean that is all my body currently battles. Scleroderma is often times all I mention in my articles and features solely because I don't want to roll out a "King's Proclamation" sized list of illnesses every time I write. I would lose readers interest after the first 10 diseases for sure! lol ...Systemic Sclerosis, Systemic Lupus Erythematosus, Leukocytoclastic Vasculitis, Interstitial Lung Disease (Pulmonary Fibrosis) Dysautonomia (Hyperadrenergic POTS & Autonomic Neuropathy) Polymyositis, Gastroparisis, Lichen Sclerosus, Occipital Neuralgia, Fibromyalgia... should I continue, or are you bored yet?
So please understand when I say words like: fatal, or terminal I am speaking of my particular prognosis -- though it is a few other patient's as well. Due to my overlapping conditions, and the organ damage accompanying them, I was given a short life expectancy. This is not spreading "bad vibes" or being "pessimistic," it is just stating a medical fact. Anytime a physician puts an expiration stamp on your life you are considered a terminally ill individual -- whether it be six weeks, six months, or six years. The definition of Terminal is: an advanced stage of a disease with an unfavorable prognosis and no none cure. Incurable. To result in death. Terminal disease does not always mean we will shortly die, it means we will fight through weeks, months, or even years of suffering from a disease that will take our life well before a typical human lifespan. Treatment can prolong our expectancy occasionally, but not cure or halt our illness.
Life expectancy is a tricky topic for patients, as any of us could die tomorrow in an unforeseen circumstance -- there are no guarantees. However, when you have a progressive illness, your body can only hold out so long before it collapses under the pressure.
No, I do not live in fear of my "timeline" as medical science is always advancing. I could live well beyond my ten year limit, or I could live much shorter. I was told to say good-bye to my family last year during a 30 day hospitalization that nearly took my life. Friends came from across state to hold my hand -- yet hear I am.
So please remember everyone's journey is different. If you are newly diagnosed and recently found my blog, worried about your future remember, my journey is not your journey. You may never need oxygen, a feeding tube, or intensive chemotherapy. If you have been diagnosed ten years and are doing well remember, your journey is not my journey. Your doctor may have told you, you will live a long happy life, and they are probably right -- though they could also be wrong. I write posts, share photos, and create videos not to frighten other patients, but to give a realistic perspective on the devastating toll autoimmune disease can take on the body -- which includes death.
This is my journey, my story, and my reality. I am happy to share it with readers, and to offer support, advice, and experience when I can. Illness doesn't come with a disclaimer that we are all individuals -- but it should.
Posted by Chanel White