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In writing these particular posts, I am revealing a great deal of personal information to the public, but part of my reason for doing so is to help educate others in understanding certain kinds of medical issues. I’ve touched on my birth defect in previous posts, but I’d like to share some of my recent experiences with you and how it has altered my perceptions of myself. Now, I’ve come to learn that I have what’s called a bilateral cleft palate, meaning the cleft does not just run up through one nasal cavity, but both. I originally thought this cleft ran vertically up through my nasal cavity up to the corner of my left eye, and that was it. It was significant, but that’s what I thought it all was. Ah, the wonders of modern technology!  Last month, I went for a CT scan of my skull, as part of preparation for my upcoming dental surgery to fix my  teeth. When I went to review them with the dental surgeon, I was in for a tremendous surprise. I have almost NO upper jaw left. The cleft also ran through the roof of my mouth, practically splitting it in half. I could not believe what I was looking at on the computer screen. I was looking at my own skull, and there’s this huge….HOLE in the middle of my face. Now, let me add that this cleft was only on the inside, that there was no break in the skin on the outside. Instead of bone, there was just a mass of gum tissue. My upper jaw is the size of a child’s, and I’ve lost almost all the teeth up there, not from poor hygeine, but from the lack of bone to hold them in place. A lot of things now make sense in retrospect, now.

The doctor’s intial plan had to be completely scrapped, because it won’t work anymore. I’m going to lose what teeth I have now on top for the revised plan to work. It’s upsetting to say the least. I can deal with whatever pain is involved, but what is killing me inside is the financial cost. Tops, I’m looking at roughly $15,000. No joke. I could sell every single thing I own and still never afford it. Of course, my insurance is going to screw me over every which way from Tuesday over this, and I plan to fight them every step of the way in return. I’d like to see the CEOs of my particular insurance company squirm and grovel instead of rolling in all that money they collect for doing nothing. I am hoping and praying that someone there will see reason and grant me the coverage I need for this, instead of trying to brush it off as a ‘cosmetic procedure’. I already cannot eat properly because of my lack of teeth. The retainer I wear is over 10 years old and falling apart, literally. It’s beginning to interfere with my ability to speak clearly; the slight lisp I have has grown more pronounced, because the retainer no longer fits as well as it should. I am in constant pain from my loose teeth, and that’s not from lack of care, it’s because the bone shrinks when there are no teeth. That’s what the dentist told me, and if I lose the others, I may have nothing left.

This has been one of the most frightening diagnoses I have ever been given in my life. Some people are ashamed to have dentures—I just want to have a normal life! A 37 year old woman shouldn’t have to deal with this sort of thing. But I have to. I’ve gotten through all those surgeries, all 12 of them. I’m here for the long run. I can’t quit now.

My parents and I are going to figure things out, one way or another. I’m glad I’m finally getting this mess dealt with, even though it’s so intimidating. The one good thing about all of this is that I’m not going into this fight alone. I’ve got family, and they’ve got my back.