Why a blog?
For a long time, I've been thinking about blogging my experience with a rare autoimmune disease versus vlogging as I was already doing with Youtube (links are above). Vlogging is fun and a great way to show how I live with NMO, but it’s a lot of work for 1 person, especially while taking care of a household and having a chronics disease. I want to shed light from a patient perspective on what goes down when living with a rare autoimmune disease like Neuromyelitis Optica. A demyelinating inflammatory disease that has taken me for a wild ride. I've gone from being independent to partially dependent on others for basic life necessities. This disease has taken so much away from me. I've had to toughen up and put up a fight so that my children see that their mother is no wimp. At the same time advocating and sharing with others that life with a demyelinating disease is not a death sentence but more like a constant reinvention of an adaptive lifestyle.
What is Neuromyelitis Optica? Let's look into the medical definition of the disease before getting into the real fun part. According to the Mayo Clinic:
"Neuromyelitis Optica (NMO) is a central nervous system disorder that primarily affects the eye nerves (optic neuritis) and the spinal cord (myelitis). NMO is also known as Neuromyelitis Optica spectrum disorder or Devic's disease. The cause of Neuromyelitis Optica is usually unknown, although it sometimes appears after an infection, or it can be associated with another autoimmune condition. Neuromyelitis Optica can cause blindness in one or both eyes, weakness or paralysis in the legs or arms, painful spasms, loss of sensation, uncontrollable vomiting, and hiccups, and bladder or bowel dysfunction from the spinal cord damage. Children can have confusion, seizures, or coma with NMO. Neuromyelitis Optica flare-ups might be reversible, but they can be severe enough to cause permanent visual loss and problems with walking. "
Now with the medical stuff out of the way let’s get to the real point of this blog. As a patient navigating and experiencing the fabulous life of NMO, I want to blog about topics that may be uncomfortable for most to address with their loved ones, friends, and surrounding acquaintances. For example friendships, marriage, sex, personal care, professional relationships and anything else comes to mind in the journey of this blog. I think one of the reasons I’m such a positive person throughout my journey is because of my communication skills and I would like to share my perspective on how to carry these conversations. The key to any relationship is communication and if you can achieve the skill then your needs will be met.
I invite you to check my Youtube channel to check out my story of how I was diagnosed with NMO.
Stay safe fabs!
