I have started a new journey recently. As many of you know for the last few years I have been pretty sick. I have been paralyzed on one side of my body. I had to learn to walk again. I was blind, more than once. My life has been a constant up and down and pretty honestly it has been scary as hell. My diagnosis has gone from one extreme to another with a million tests in-between. Well, as many of you know my initial diagnosis was of MS. Lucky for me it didn’t take my doctors long to realize that it was not MS but not before I was on the treatments for a while and found myself sicker and sicker. But then I found out that it wasn’t MS. What I have actually been suffering from for the past many years is Neuromyelitis Optica Spectrum Disorder. I know many of you have been following me on my journey, but some of you may be new to NMO so I would challenge each and every one of you to hop over to this webpage to learn more about NMO Guthy Jackson Charitable Foundation This foundation has done so much for NMO and research into NMO. I would love for you to go over and learn more form them! They even have a store where you can purchase NMO items like shirts, etc. and the funds all go to NMO research! I highly recommend checking them out!
Okay, so this blog is about me and my journey. I should start at the beginning I suppose. In 2005 I started having vision problems. Back then my teachers and school advisors thought I was making it up. It’s no lie that they thought I was a liar. Well, that turned out to not be the case (obviously as I sit here typing this I have a diagnosis). Anyway, so I started having vision issues back in high school but did not have my first case of transverse myelitis until college. I remember that day like it was yesterday. I was helping my family outdoors. It was hot and one moment I was fine and the next I couldn’t feel anything on my right side of my body. My parents rushed me to the emergency room thinking I was having a stroke. We really didn’t know what to think. Luckily, it wasn’t a stroke but rather a transverse myelitis episode which my doctors promptly treated with steroids. Even with the steroids though it was a LONG journey to get back on my feet. But I did and found myself in for the fight of my life. You see, they thought it was MS then. So I started a regimen of MS medications. Oh gosh did they make me sick. I had flu like symptoms which were common with the MS meds, but as it turned out I was relapsing over and over again with optic neuritis to a point where I was actually blind in both eyes for a spell. Talk about scary! It was about then that we found out that it was NOT MS but rather NMO.
So, Now here we are. New diagnosis. New treatment. New everything. This is where we have come to and where my journey with this blog will begin. Newly diagnosed with a new treatment plan my life is about to change and hopefully for the better. I hope to share with you my journey via this blog as a way to keep in touch with friends and family and to help people understand NMO and what it does to a person and how our lives are changing.
Where do we go from here? My life is about to change. Obviously I have been sick for a while but only now will my life truly change. I have a treatment plan. I have a team on board that will help me. I have friends and family surrounding me. My journey is only just beginning, but my life is far from over. This is going to be an amazing journey and I am glad that I get to share it with all of you. Here’s hoping and praying that our journey is fruitful and that my life will be better for all that we will manage.
Welcome to my journey …. buckle up, it’s going to be a wild ride!!!