MCTD Warrior Blog

Stories, insights, and support for the MCTD community. Join us in sharing experiences and knowledge.

My health

THE DAILY PRODUCTION OF APPEARING WELL AS A CHRONICALLY-ILL PERSON.

Living with a chronic condition makes the world seem like a stage, and I feel like an actor on it. I feel like I am acting every day when I venture out into the world, often for my own benefit. As a result, maintaining good appearances becomes a daily performance; pretending that nothing is wrong with […]

antiphosholipid syndrome Asthma autoimmune diseases Chronic fatigue chronic illness chronic inflammatory demylinating myelopathy chronic pain Demylinating Myelopathy Depression dynamic disability Fibromyalgia hemiplegic migraine invisible disabilities Invisible illness Mental health Mixed Connective Tissue Disease myalgic encephalomyelitis PERIPHERAL NEUROPATHY Polymyositis raynaud's phenomenon Rheumatoid Arthritis stiff person syndrome Systemic Lupus Erythematosus
My health

8 THINGS I HAVEN'T TOLD MY FAMILY & FRIENDS ABOUT BEING CHRONICALLY SICK.

I came across this article by Sara Naveed that resonated on every level, so I thought I might share it here: If someone were to ask me to describe what it’s like to live with a chronic illness, I honestly wouldn’t know what to say. Perhaps it’s the expectation of living a normal life and […]

antiphosholipid syndrome Asthma autoimmune diseases Chronic fatigue chronic illness chronic inflammatory demylinating myelopathy chronic pain Demylinating Myelopathy Depression dynamic disability Fibromyalgia hemiplegic migraine invisible disabilities Invisible illness Lupus Mental health Mixed Connective Tissue Disease myalgic encephalomyelitis PERIPHERAL NEUROPATHY Polymyositis raynaud's phenomenon Retinal vasculitis Rheumatoid Arthritis sciatica stiff person syndrome Systemic Lupus Erythematosus
My health

STIFF-PERSON SYNDROME.

March 15 is International Stiff Person Syndrome Awareness Day, so I thought I'd create awareness about this rare disease. 15 years ago, when I was in the throes of unexplainable symptoms cropping up and doctors having absolutely no idea what to do with me, I started experiencing full body paralysis. I’d be paralyzed from the […]

autoimmune diseases chronic illness stiff person syndrome
My health

30 LESSONS THAT ILLNESS HAS TAUGHT ME.

Today is 01st February 2023, and thirty years ago, a bouncing baby girl was born, so happy birthday to me!For the past 18 years, I have lived with several autoimmune conditions; conditions that are a major part of my day-to-day life, and that I’ve become quite good at co-existing with.Even though life with these chronic […]

Anti-phospholipid Antibody Syndrome antiphosholipid syndrome APS autoimmune diseases Chronic fatigue chronic illness chronic inflammatory demylinating myelopathy chronic pain Demylinating Myelopathy Depression disability dynamic disability Fibromyalgia hemiplegic migraine invisible disabilities Invisible illness Lupus Mental health Mixed Connective Tissue Disease myalgic encephalomyelitis PERIPHERAL NEUROPATHY Polymyositis raynaud's phenomenon Retinal vasculitis Rheumatoid Arthritis sciatica stiff person syndrome Systemic Lupus Erythematosus
My health

HOW ACCEPTANCE CAN TRANSFORM OUR RELATIONSHIP WITH CHRONIC ILLNESS.

When chronic illness shows up, it often robs us of our plans. It reroutes the itinerary we had for our life. It steals the future we imagined. It diminishes our capacities and transforms our circumstances. It kicks our ass and demonstrates with absolute clarity (in ways that many of us are not accustomed to being shown) that […]

Anti-phospholipid Antibody Syndrome autoimmune diseases Chronic fatigue chronic illness chronic inflammatory demylinating myelopathy chronic pain Demylinating Myelopathy dynamic disability Fibromyalgia Mixed Connective Tissue Disease Neuropathy Polymyositis Rheumatoid Arthritis stiff person syndrome Systemic Lupus Erythematosus
My health

WHAT IT MEANS TO BE "TIRED" WITH CHRONIC PAIN.

Everyone gets tired on occasion, right? You know, where you may be dragging a little more than normal. Maybe you didn’t sleep well the night before. This is to be expected. Well, for those of us who live with chronic, intractable pain, being a “little tired” on occasion would actually be welcomed, dare I say […]

Anti-phospholipid Antibody Syndrome autoimmune diseases Chronic fatigue chronic illness chronic pain Demylinating Myelopathy Fibromyalgia Lupus Mixed Connective Tissue Disease myalgic encephalomyelitis Neuropathy Rheumatoid Arthritis Systemic Lupus Erythematosus
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