Difficult Years

It maybe difficult to write but I believe that I owe it to others who are suffering or loved ones of sufferers to share the details of my condition in order for them to understand more about the disease. We can't all suffer quietly. We need to tell the world we are here and let them know what we're going through. I'm tired of suffering this invisible disease where only I/or maybe God knows what's going on with me. Hardly anyone can sympathize with you because you look normal as can be. You're screaming in pain at the hospital and others look at you like you're exaggerating. Even your care provider thinks you're making things up or look at you like you're crazy. 

I started this entry almost a year ago but never finished it. Using my eyes and my fingers is almost impossible but there's so much I want to share.

Syringomyelia does attack you at will, like one sufferer said, it leaves nothing. It penetrates every part of your body. It had gone to my tongue, jaw, nose, ears, skin in my head and forehead, my eyes and lips.

I don't remember if I had mentioned that in 2014 my body almost doubled in size. My legs became bigger and almost every part of my body. (I had to change my whole wardrobe from a size 4 to size 10!) It has been depressing for me. My right nostril has been swollen since making my nose look even bigger. My forehead down to the lids of my eyes are wrinkly and so dry. The lids drooped and are covering most of my eyes that my Ophthalmologist recommended that I have surgery but I refused. It worked out because now my eyeballs are sunken like having Enophthalmia. It's always horrifying knowing that my eyes 
will just stop functioning anytime. My eye doctor said to call her even at midnight when it happens. Her and I are just doing 
everything we can to prolong their life. 


The pain in my eyes is very intense. It's searing, like slashing with blade. It's agonizing pain. I always say, it feels like my eyeballs are being pulled out of their socket. I can't open them without eye ointment. Applying eye ointment makes everything blurry. Try and 
picture that. With grease all around it. So sexy! In addition to wearing a neck brace. Hmmm so hot!lol.

But what are you going to do? Just live with it. It's alright. It's not too bad at all. Keep praying and make yourself believe that everything will be better. It always helps.