Well, my zebra friends, I suppose it is time for an update: I am SO VERY sorry about my absence on this page. Please forgive it, and know that I would REALLY love to be posting every day... However, my computer is completely fried and I lost over 20,000 pictures and about 10 years of my life (memories, music, documents, etc.) That being said, I no longer have the VAST amount of EDS pictures (I hadnt posted half of them, yet). I will try my best to work something out and post when I can. Next; The BIG NEWS (Lots of bad, One BIG good) The Bad: I will be getting total jaw replacement surgery on both sides of my face. My jaws have ground down over half an inch of bone because there is NO lubricant/tissue anymore, its all scars and destroyed tissue. Because of my increasing allergy list we had to go with a pure titanium implant. I went to Dallas, TX (about 10,000+ miles from where I live), spoke to my surgeon, and he described to me the surgery, and while I was there I was able to talk to a couple others that have had similar surgeries.... My jaw specialist (here at home) said this surgery was not a big deal, that I would feel Immediately better, that I would be able to eat as soon as I woke up from the surgery, he made it sound doable. BUT, after I spoke with the surgeon (who was very nice and explained everything in Total detail.. I almost wish he hadnt), he told me what he was going to do; cut into my ears, go in through 6 different areas of my face, I will have to get BRACES FOR AT LEAST A YEAR (I had them for two years when I was younger and they are torturous. The surgery is going to be 8 or more hours, and I will require blood transfusions. I will be in the hospital recovering for about 8 days, stay in Texas for two weeks so the doctor can make sure everything is going okay, and then we get to DRIVE the 15 + hour drive home... with my face swollen, bloody, and painful. I am scared. I am not afraid of death, but I am VERY afraid of MORE pain on top of all that I am already dealing with. The people I spoke with that had similar surgeries gave me even less hope; they didnt even have EDS, and they suffered a Great deal and told me just how horrible the healing process is. I will be on a liquid diet for 4-8 months, I will have braces and physical therapy for over a year, and it will be about 2 years for me to properly heal. The amount of metal and incisions that will be in my face is terrifying, as is the 15 hour drive home. This, among the loss of my insurance very soon, my health getting worse, and my disability case in a stasis have all been building up my anxieties (and Im sure you zebras know what stress and anxiety does to our bodies; makes it all WAY worse). TO ANY OF YOU WITH JAW PROBLEMS: THIS IS A CAUTIONARY TALE. Do NOT wait until you jaw is dislocated and you can barely chew to see a doctor. If you have jaw pain; get it taken care of As SOON AS POSSIBLE. you do not want to end up like me. GOOD NEWS: I will be going to my Favorite groups concert in just 6 days! My wheelchair came in a few days ago and I am already making it personalized and awesome. I have chrome skull and crossbones on the center of the wheels, I have lights and wheel covers to put on it for the concert and Im VERY excited! (this group is Quite eccentric and my wheelchair will match that energy). This is probably my last concert, so I am going to try my best to feel good and be awake. Once again; apologies for not posting. I dont like putting my negative energy out there when Im feeling so down and helpless, so I opt to stay quiet instead of venting on here, for all of you. I know everyone has their struggles, and I am sorry if I havent been here for you. I am trying my best to get my computer fixed/find a new one, but having no income makes that quite hard at the moment. You can still message me any time and I will get back to you as soon as I can. Gentle Hugs & Zebra Love
Posted on: Wed, 10 Sep 2014 20:43:43 +0000
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