Category: maxillary hypoplasia



Me again. I haven’t written in some time because I’ve been recovering from major oral surgery about 2 weeks ago. I’m still in pain, but it’s much better than what it was earlier. I’m excited and yet depressed. It feels as if that every step taken by the doctors to make me look more ‘normal’ also make me uglier in the process.

So what happened? I had all of the remaining teeth in my upper jaw (all five and a half of them) extracted. I then had four dental implants placed, two to a side,  in the places vacated by the teeth. I’m toothless on top, basically. I wanted to cry when I looked at myself in the mirror once I was feeling better. I thought I looked like a monster. I was in tremendous pain, my face was swollen all over, and I could barely eat anything. All I could think of at the time was ‘how could I let them do this to me?’

When you come down to it, this was for the best. It was the best option available for me. I am praying that the implants take  and prove to be viable. I am presently wearing a denture as an intermediary step before the final procedure, and that has been a sobering experience. I’m learning to chew properly for the first time. I’m learning how to speak with it in my mouth. It’s awkward for me and uncomfortable, but it’s what I have to deal with right now. I feel embarrassed. I am so scared that somehow it will come loose when I’m talking or eating, and I would just die of shame if it did. I’m not even forty, and I’m in dentures.

Oh, I should be grateful, yes. I should be damned glad I could get this covered, that the insurance decided not to screw me over and cover this. I have spent my whole life aching to be normal and fit in. I don’t have to wear that ancient, broken retainer anymore, a retainer that was easily over 10 years old and not supposed to last that long. I had no choice, though. I’m glad this is done, though. I’m closer to my goal. In a few months I’ll go back to the oral surgeon and he’ll screw in the implants, and I’ll have a solid, removable bridge that won’t fall apart like that sorry retainer.

There are upsides to all of this. I can smile without feeling like a moron anymore.

Hole in my head


Teeth

Image via Wikipedia

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.


An ocular prosthesis

Image via Wikipedia

If you know what I’m referring to by the phrase ‘surplus population’, good for you. If you understand why, even better.

I’ve been thinking about the state of healthcare in this country, which is a huge joke, in my view. The healthcare companies will do EVERYTHING and ANYTHING to deny you coverage of procedures that are desperately needed, but are always happy to help out those with the most money to get whatever THEY need covered. I’m beginning to see that it’s really about how much money you have.

I don’t have a lot of money. What I make can’t even get me a studio apartment, and it’s sad. I also have some significant medical issues that are also sadly, rather expensive. Might I add, this is not because of poor health choices, but birth defects. An ocular prosthetic costs $2000 without insurance, and the one provider I had at the time I needed a replacement refused to cover it, claiming it was purely ‘cosmetic’. So I was expected to go around with an empty eye socket instead. I gave Aetna hell for months over it, me and the secretary from my doctor’s office. They gave me all kinds of excuses for why they didn’t want to pay for it; it was cosmetic, it was unnecessary in their view, I had to see a specialist that was in California (!!) of all places—I live in New York, by the way. I already HAD the specialist who’d been making my pieces since I was 4 years old, and he was located in my own state, but they didn’t want to cover it, but they would cover a small portion if I saw the person out on the West Coast. Bull. Dinkies.

Do I sound like a scam artist to you? Do I come across as one of those ‘welfare parasites’ the rich whine and moan about endlessly? Do I seem like someone bent on cheating Medicaid out of money for my own nefarious purposes? You really want to go there? You think just because I have a job, a car, shelter, health insurance, life is perfect for me? I get told by some insensitive, heartless boor that I ought to pick up a few more part-time jobs to make more money in order to survive. So I either work myself to death to make more money or I try to survive on what little I have? Not everyone is built to be a human automaton, working themselves in to a frenzy for money. I can’t do that, with my medical issues. Of course the next thing I get called is that I’m just lazy. Bite me. You trade places with me and what I’ve lived through and you call me lazy to my face, rich conservative pigs. I challenge you.

So healthcare is really only for those who can afford it, which comes out meaning only the wealthiest of Americans should have it, and everyone else can just die. I shouldn’t get healthcare because I’m low income? Not everyone who is low income is a criminal. Or an illegal immigrant. Or whatever racist stereotype the far right chooses to insert into the slot. I am just trying to get by in this life. I’d be happy to do it without all these stupid health issues. Did I also mention that my wonderful birth defect screwed up my upper jaw and I need a crapload of dental surgery to repair  it? I am praying that the dental coverage I have gives me some kind of support, because otherwise it WILL eat up EVERY penny I have. I am praying to every deity I know that I will be able to have this work done without bankrupting me in the process. I either get my teeth fixed or I find an apartment. I need both, but I can’t afford both. There are people in this kind of situation EVERY LIVING MINUTE through no fault of their own. Oh, it’s just teeth. I can’t eat properly without this work, or speak clearly. It goes beyond aesthetics, people. It’s quality of life care, damn it. Everyone should be entitled to it, not just the rich and useless. I’m in pain from this. I have several teeth on the verge of falling out, NOT because I have poor hygeine, but because of this damn cleft palate. I worry if I’m going to lose them during my next meal, or if they’ll just come out for the heck of it. Family is going to help me pay for this, because they know how important this is for me, and how much it would improve my well-being. I don’t like it, but I should be grateful that I have people who care that much about me.

Aetna finally caved in after at least 6 months of me and the secretary badgering them, and when I threatened to take Aetna to court over their refusal. They still left me with $800 dollars to pay myself, but they swallowed the rest. I hope it hurt them going down. I don’t have that insurance anymore. Not after screwing around with me like that. I’d say ALL of the healthcare companies act just like that, though they’d deny it. They’re welcome to prove me wrong. Maybe they’d like to cover my expenses this time around, just to show that they perhaps DO care about their customers instead of how much money they’re bleeding off us.

In closing, I don’t want anyone’s damn money. I just shared some of my issues because I am only one of far too many who are in the ‘surplus population’ that don’t get the things they depserately need to have a decent existence. We’re human beings too, and it’s about time we were treated as such.


Some schools have Gay-Straight Alliances or si...

Image via Wikipedia

I don’t own a webcam, so I can’t make a video to share. I thought maybe if I wrote it out and posted it, it would find its way to the ‘It Gets Better‘ project. Things really hit the roof last year with the rash of suicides and media attention. I think you know what I’m talking about. My personal feelings are that there really ARE that many suicides due to anti-gay bullying that they do take their lives, but people don’t want to talk about it. And they don’t want to admit they might’ve been complicit for creating the atmosphere for someone to take their life.

I grew up bullied in school over my birth defects. Kids taunted me mercilessly because of my face, calling me horrible names, even hurting me. It took a toll on me emotionally and psychologically. By the time I was in middle school, I had convinced myself I was a monster and less than human. I believed that what the bullies said was true–I was a freak, my parents hated me, that I deserved to die, and no one would ever love me. I was antisocial, I preferred to be alone, and I occasionally had outbursts against other students. The name calling was the worst, I think. I’m not sure how graphic I should get, because I would like to see young people be able to read this and understand. A lot of the names were extremely vulgar, filled with obscenities and just downright cruel. No-nose is probably one of the tamer ones used on me. Or flat-face, retard, ugly, and stupid.

It was in middle school that my father enrolled me in karate classes taught by the high school math teacher. My father, who was also a teacher, found out that I was getting regularly hurt by the bullies in school, and he feared for my safety. He thought the martial arts would help me defend myself and give me the discipline he felt I needed. It was a good gesture, but I was already far down the path of depression. I was angry by the fact I had gone through so many reconstructive surgeries, having braces, not fitting in. Now I was being told I was depressed, and I refused to admit to it for a long time. It made counseling very difficult. I know my behavior drove my parents crazy, because all they wanted to do was help me. I was punched in the hallways, where I couldn’t see who it was because of all the other kids, had my locker door shut on my head as I got my books out of it several times. I used to be regularly targeted in gym class with balls, even though the teacher enforced no head shots. They did it anyhow. One incident I was struck in the head with a kickball at a distance of no less than three feet, thrown with full force. It hit the side of my face so hard it knocked the prosthetic lens I wore over my non-functioning left eye right out. This was in front of everyone. I’d never done anything to the kid who hit me. I avoided everyone, for that matter. I would’ve done everything to be invisible if I could, just to avoid attention. The kid got punished for that incident, but it didn’t deter others. No one should be made to live in fear like that, to worry every day what might happen to them.

When you’re bullied so much that you want to end it all, it means that you’re at the point where you don’t trust anyone for help, not even your own family. You don’t think there’s anything anyone can do to help you, because you’ve become accustomed to seeing everything in a negative light. It wasn’t until after high school I began self-injuring, to try and cope with my pain. I felt I deserved to be hurt, because I was a mistake, I was worthless, I didn’t deserve to be born. When I was in school growing up, bullying was just a part of surviving. You didn’t complain to the teacher about it, or you’d face even more abuse from bullies. You kept your mouth shut and your head down, praying they’d miss you. It wasn’t the epidemic it’s become nowadays, because people didn’t think bullying was that serious a matter.

I wasn’t bullied for being gay, I was bullied because I was different. I didn’t choose to be like this, I didn’t ask for a dozen surgeries or to be blind in one eye. It was how I was born, and if you think that’s a cruel twist, how about this? I’m an identical twin. My sister was born with no problems whatsoever. Because of me, she suffered the abuse of bullies too. She was taunted because she had a ‘retarded’ sister. My sister was the only one who ever defended me from the jerks.

It does get better, believe it or not. It may take a long time. It’s also a choice. You can choose to stay miserable, wallow in your pain, even take your life, if that’s what you think is the right solution. I don’t think those will be particularly beneficial methods. You can make the conscious effort to get better, though. It’s a brutal road, full of potholes and obstacles, but if you are determined to show the bullies up, you will succeed. I am still fighting this battle, even now. It doesn’t matter what one’s ‘difference’ is. You don’t even have to be GLBT to be bullied; you could be in my situation and get hassled. You could be of an ethnic group that’s not common to a small town and get bullied because you don’t fit into the community. You could have a major disability and be ridiculed for it. You could be non-Christian and be threatened because you don’t attend the churches everyone in town adheres to. In regards to that one, go look up Tempest Smith. It’s a heartbreaking case that is no different than the bullying sweeping the nation over the past year, and that took place a number of years ago.

What you need to remember is that for things to get better, you need to fight for it. You have to fight back tooth and nail, because you deserve to be here on this earth as much as any other. You are someone’s loved one, a daughter, son, brother or sister. No one has the right to say you don’t deserve to be here, because they don’t know what they’re saying. There is a certain satisfaction that comes from proving the haters wrong, and it’s better than any kind of food or drink. They tried to break you, tear you down and you’re still here. You’re thriving, succeeding, knowing you have every right to exist. No one can take that from you ever. In closing, I’d like to say to all of you who are hurting, you’re not alone. You have friends, you have people who care so much about you. Don’t ever give up.


orchid

Image via Wikipedia

To be truthful, I have never felt normal. I haven’t led exactly the most normal life either. Most kids don’t spend half their childhood in and out of the hospital for reconstructive surgeries, or dealing with years of braces, headgear that look like a catcher’s mask, or getting half you head shaved for a procedure. That was not fun, and I would get so mad when someone mistook me for a boy. (It was in the summer, I was six years old,and spent most of that time in shorts and t-shirts. I also wore a baseball hat to cover my bare scalp).

I dreamed all the time of living a life without complications, without going to doctors, not being teased and bullied in school for my looks. I wished I had the ability to turn invisible, because I just wanted everyone to stop staring at me, so I could just go on and not be bothered by anyone. I hated the popular kids, and yet, I wanted so desperately to be like them. I wanted to be normal. I wanted to fit in, but no matter how hard I tried, I still was the butt of insults and humiliation.

There was a very bitter realization when I came to see I wasn’t going to be transformed into something devastatingly beautiful. This was me, I wasn’t going to be able to make my nose look perfect, I wasn’t going to make the scars on my face go away (unless I got creative with foundation), and I wasn’t going to have a perfect set of pearly whites to flash when smiling. It sucks big time, but it’s something I need to accept. At this point in my life, I’m pretty much there. But for all this time, a bit of wisdom from my college years came back to remind me. Where he’s gone now, I’ll never know, but he gave me the most profound advice I have ever heard in my 36 years being alive. Why be like everyone else when you can be unique? That’s what this acquaintance told me. Louis, of the scraggly goatee, glasses, and the Russian Army greatcoat. Louis, with the six-inch mohawk and steel-capped monster boots. I might add, one of the most eloquent and intelligent individuals I’ve ever met. Why would I want to be a carbon copy of every other girl out there when I can be completely myself? There was not another person on this earth like me who looked the way I did, thought the way I did, had my own particularly shrewd sense of humour. I should be embracing those attributes instead of burying them. At the time, I laughed at it, trying to deny to myself that they actually did make a lot of sense. At that time, I saw myself, or tried to make myself a sort of non-entity. I wanted to just fade into the background. Thing is, no matter how hard I tried, I was still visible and after a while, I got tired of it. What was so terrible about being different? Why is standing out in a crowd so awful to us, especially in America? Why did I want to be a part of those snotty, nasty girls in school? Because they always had the latest fashions? Because they were popular and had lots of friends? When I think about it, their lives were very shallow compared to mine. Theirs was all surface and attention, while mine was a matter of survival. I never asked for what happened to me, but it did. I get frustrated at times because of what I’ve been through, but I think it’s also taught me some valuable lessons. Some people may have just given up, after going through what I did, ended their life because they just couldn’t deal with the pain. I’ve been close to that point several times, but never broke. Maybe it makes me stronger, or that it shows I’m a survivor. Kids thought I was mentally handicapped because of my birth defects (shows how much they know!), but here I am, blogging! I’d like to think I’m fairly eloquent in my posts, and clearly that means something to those who read what I put out here.

So I’ve decided to embrace my uniqueness, because honestly, normal is really boring. Normal is not challenging the imagination, or the rules. Normal is living in a rut, because getting out of it means entering unexplored territory. I am different, and I’ve come to like it. I would rather befriend the shunned girl with the dyed blue hair than all the Abercrombie & Fitch outfitted brats, because there’s got to be a great story behind that blue hair. I’m blind in one eye, and for a time, it was a mark of shame for me. Now I accept it as just a part of who I am, and have developed a wicked sense of humour about it. I’ve played pranks on people with it, much to my immense delight. That’s empowering. I don’t have typical interests. I love being a sci-fi nerd, reading graphic novels, getting technical over computer special effects. I like wearing unusual makeup, or dressing a little outside the norm. I like bending the rules when it comes to my appearance. I have two tattoos and stretched lobes, because I like it. I have musical tastes that span the spectrum, from chamber music to metal and electronica. I don’t think it makes me a frivolous person, but much more dimensional. I’m always changing, because I am trying to figure out who I am inside. I never let myself embrace that growing up. The most amazing thing that I have discovered is that people think I’m beautiful. They have told me to my face I am an attractive woman, and I have never been able to express how amazed that sounds to me. They say I’m beautiful also because of who I am inside. I care about what people say, and I care about what I say to others. If all these different little facets are what make me shine, then I’m happy to say I am unique. I’m not better or worse than anyone else. I’m human, which is something I have overlooked for a long time. Every single orchid is unique in its shape, and rare, and beautiful. That’s how I see myself. Unique.

I have to offer thanks to someone who inspired me to not be afraid of being different. La Carmina, I truly enjoy looking into your world and seeing how I can apply it to my own. Thank you for helping me see my own strengths and potential. Plus Basil, who is my furry life preserver.

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