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.


  1. As someone who also has a laundry list of conditions, I can so relate!! You have a beautiful and important blog. Makes me want to start one even more. I'm 57, and am currently dealing with rheumatoid arthritis, osteoarthritis, Sjogren's Syndrome, fibromyalgia, degenerative disk disease with two herniated disks, chronic migraines, chronic major depression (but doing well on meds I've taken for it for more than 25 years), and Common Variable Immunodeficiency (which means I make no immunoglobulins & can't fight infection without the weekly subcutaneous immunoglobulin G that I give myself). I'm past menopause now, but when I was younger, I also had to deal with Polycystic Ovarian Syndrome. Nothing as serious as you have to deal with (!), and I wish you the very, very best in your journey! Many hugs, young one. I wish you didn't have to deal with all this.

  2. I just realized that I left off the condition that will probably take me out eventually - kidney failure! They've been failing for the last 6 years or so, though I'm only in Stage 3. Stage 5 is when you need dialysis, and I desperately hope I never get there!

  3. Jennifer my best friend is in stage 3 of kidney failure and is type 1 diabetic. It's hard to sit and watch her in and out of the hospital. The month of December she had 5 hospital stays for average 3-4 days. She was in the hospital more then she was home. I try my hardest to help her cause she also has a two year old daughter she has to support. She knows she can come to us for anything. I sometimes think we are there for her more then her own family. I borrow her money but never ask for it back. I help with the baby. Currently helping her get a divorce from her abusive husband.

    I commend you two ladies. I suffer from an array of mental health issues and degenerative disc disease and already had two back surgery before I was 25. Currently waiting for my insurance to approve an mri for imagines from my neck to my hips. All three were denied so I have to jump thru their hoops (i.e. PT and crap) in order to make sure things have not progressed. I have had epideral injections and RFA treatments and now nothing is working. I take nerve meds, pain pills, muscle relaxers, anti-inflammatory meds, recently put on Prilosec to coat my stomach to protect it and my esophagus, anti depressants, anti anxiety, and probably many more I have missed. I'll take my illness over any thing you two are dealing with. Some days it's hard to get out of bed but I am an ambitious woman like the two of you. I go to school for social work, I'm a supervisor for a behavioral health group home, I waitress part time because I love interacting with ppl and having my regular customers, I have been with my "not husband" (lol, we aren't legally married but I call him my "not husband") for 12 years, and we have two beautiful girls together.

    When there is no other options then to continue to fight and push through everyday, that's all you can do. I commend you Chanel and all you do, getting up everyday and fighting your fight, and reaching out and sharing your story. Thank you and I look forward to following your story!!! Sending my love and best wishes to you and your family, as well as all your followers. Godspeed!

  4. I am 74 years old. Two years ago I noticed that I was finding it harder to walk in the hills, after 3 months my condition suddenly worsened, following an xray and a MRI scan I was diagnosed with Idiopatic Pulmonary Fibrosis (IPF). I start taking a corticosteroid and Pirfenidone, even with these medications i still remain very breathless when climbing the 15 steps to our front door, i wake up at night coughing persistently and hacking for hours. In July 2016, my neighbour Nicholas Quale referred me to NewLife Herbal Clinic, he had initially purchased Lymphoma herbs from them. I purchased their Pulmonary fibrosis herbal remedy and immediately commenced usage, i use the remedy for about 9 weeks and my condition greatly improved for good, all symptoms including breathlessness, tiredness, shortness of breath, coughing etc are gone, i did another scan, the result was unbelievable, my lungs are repaired, visit or email