A year ago I received this diagnosis. When it come up on the radar in July I googled it and the first hit explained that a person with NMO had a life expectancy of 4 years. For me this was a sure sign to stop googling! (This is not true by the way) A month wait to get into to see a NMO specializing neurologist and then a few weeks of appointments and tests and finally the sit down meeting where I was gifted the NMO Patient handbook a few prescriptions and sent on my merry way. Fast forward a year… I am one of the lucky ones. So far the prevent medication is working and I have not had any new lesions. My body has been afforded time to heal and I have weaned off of a couple meds that have unfortunate side effects. I am back to work (Is this a good thing?) I’m back to not having enough time to sew and I have had a chance to connect with fellow NMO Warriors who deal with the uncertainty of life and the side effects of neurologic injury. I call what I have left nuisance symptoms. Cramps and muscle spasms that appear after a busy day or 3 nights of work in a row, buzzing and tingling throughout my body and stabbing nerve pains. Thankfully these do not occur too often or too severely and I have a pain plan in place which is not the case for all NMO patients.
So a last week I decided to take my NMO t-shirt which was just a man’s traditional T shirt and re-sew it into what I refer to as my Where’s Waldo NMO shirt! The fit is so much better and now I can wear it with pride!