November 17, 2015

eyes wide shut.....

..........back in January of 2013 my eyes started feeling weird. My eyelids felt heavy and I had difficulty keeping them wide open. People would think I was asleep or tired, it felt uncomfortable but I kept quiet not knowing what it was. Then on December of that same year, my eyes just shut closed. I tried opening them but couldn't, I used my fingers to keep them open but still couldn't. So I decided to tell Joe ( the hubs & personal doctor) my symptoms and he gave me a diagnosis, not a very good one. He then consulted with a neurologist and she performed a test on me and it confirmed the diagnosis Joe gave me. An autoimmune disease called Myasthenia Gravis. Quickly I was put on medication. Gradually it was increased to almost dangerous high doses and my eyes and symptoms didn't change or got better at all. We decided to go for a second opinion. This other neurologist had me have a million tests and blood work to discard any possible malignancy with my muscular and/or inmune system. Thank God everything was negative, I had a false positive diagnosis. So he discontinued my medication right then and there and referred me to a neuroophtalmologist that same day. He saw me quickly and gave me a diagnosis as soon as he saw me. Blepharospasm, which is a continous and never stopping spasms on my eyelid muscles. I can't keep my eyes open because these spasms won't let me have control over my eyes. Bad news is there is no cure, I'll have to live with it for the rest of my life. "Good" news is it's treatable. The treatment is therapeutic Botox, NOT cosmetic, every three months. The Botox relaxes, freezes, the muscles on my eyelids  and around the eyes so the spasms are not too severe and I can keep my eyes open. I've been on treatment for a year and a half now. I look forward for that day every three months like it is Christmas. But sometimes it just won't work as desired, just like the last two applications (6 months). They were not so good, my eyes were not responding to treatment. So yesterday was Botox day. The Dr. increased my already high dose and we are hoping for the best. Once he injects me I have to wait ten days for the medication to take effect, I'm hoping my eyes will be open for Thanksgiving Day. 
I hate to have to explain people that I'm NOT asleep, I just need to rest my eyes thru the day. It drains me physically and mentally. At the end of the day I'm very tired, it takes a lot of physical effort trying to keep my eyes open.
Why am I explaining this? Because if you're reading this blog and see me around you won't be asking me why I'm squinting my eyes or have them closed. 
I'm so grateful of my family because they help me so much, they make my life so much easier. They drive me everywhere I need to go, though I'd rather drive myself but can't, guide me when I'm "blind", and give me the strenght I need to go on and keep my sanity. 
So, there it is, my condition, my need for Botox, the reason why I don't get together with my bestie as much as I'd like and rather stay home secluded. 
I live day by day. One day at a time.

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