Some of us, like myself, dont know we have this disease until it is too late and we are bombarded with a sudden invasion of specialists and doctors into our lives who are clueless on what has happened. Surgery up on surgery is done to repair each oncoming injury until the doctors, again like mine, begin to say they will not repair it again. There you are in pain, scared and clueless. In my case I had aneurysms thrown at me at one point. I had to make a statement in my doctors office that I knew leaving his office if I did not do EXACTLY what they had planned that I knew I WAS going to DIE! Yet here I was not even a month prior never having really had a major surgery except for c-section. Then I had my surgery for a Lumbar Hernia repair, mind you this is their first sign, which was actually only meant to be a lipoma removal. I couldnt stand up straight for 2 months later I will have lost my spleen on October 4, 2013 to 2 large aneurysms and an AVM. December 16 I go in for another surgery, more weary now since I had my first real asthma attack of my life coming out of surgery the last time. I also had to be kept awake to breath and nearly had to have them call a MERT on me because I could not stay conscious to breath on my own. You have to love Narcolepsy. Oh, but it gets better. You see this surgery, I was only going under twilight anesthesia but go figure I would make something go wrong. I stopped breathing and had to be resuscitated in the middle of surgery and awakened to them in my neck already, mid surgery with a white sheet over my face and the nurse decided to let me know I stopped breathing. YAY! Dont let it stop there though, right? I start getting injured constantly. My shoulder, both wrists, elbow.... all of them dislocated when I was sleeping one night. How can the happen to a completely healthy person? Then my shoulder subluxated while I was line dancing one night, you should have seen me explaining that one in the ER. I was not taken seriously at all. My ankles started spraining constantly, my fingers started coming out of socket. Then, even my nerves start to subluxate out of position. Seriously? This is not even the half of it believe me. I just want t you to see that in the last few months, my world has been flipped upside down. I only just got my official diagnosis almost 2 weeks ago and I take my daughter up on October 30, 2014 to have her assessed because God willing, I will do my best to help her not suffer like I do. However, collagen is a tricky thing and once it is damaged and stretched, it does not go back or repair its self. So how long will my body hold up? My right hip has already given out. Ever step I take it dislocates. So, when you see me line dancing, thank you to all of you who tell me how great I am at it, but believe me, you dont want to be able to dance like me. Its that dislocating hip that made it look better I promise. I now have a brace to hold it in place and when I wore it for the first time it was the strangest feeling to feel my hip bone touching the joint. I didnt know what that felt like.. Please spread the word about EDS and also, there is information below about a Lumbar Hernia, it is not a herniated disk. https://youtube/watch?v=zOJBzt4lu34
Posted on: Thu, 02 Oct 2014 20:52:13 +0000
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