Friday, December 26, 2008

Recovery

When I should be sleeping I'm up blogging about the surgery site.

It has healed remarkably well but I still have little to no energy, can't eat anything but applesauce (although I managed some egg and mashed potatoes), can't drink from a regular glass (I use one of the left over bottles from the small Ginger Ale container), can barely sit up without feeling like my lip is losing the battle to gravity and among other things, I'm constantly tired but can't get sleep. Go figure. So I'm pretty much bummed for the rest of the week and on into next week. Hopefully then I'll be able to get up and do more things.

I'm kinda bummed that its so swollen and is apparently taking longer to get unswollen than I had hoped. I look like a chipmunk mixed with Frankenstein on my face. Its simply terrific! But I guess its all good because the end result is what I'm looking to achieve not to come out looking like I would when the swelling goes down. I'm excited to see the end result even though I'm nervous enough to not want to see it. I think thats what everyone does after surgery. They're anxious to see it but they're somehow afraid that it won't turn out like they hoped. I'm afraid of that as well but I'm sure that it looks great.

Being laid up hasn't given me any interesting insights or any philosophical fodder that I can mold into an interesting post other than making me feel incredibly antsy and wish I could get up and do things. Once I can I'll be extremely happy and then I can go back to work to earn some more money. Then I can start going out and doing things again! It sucks being stuck in the house but it'll be worth it once everything heals up. For now I have to look at my Christmas candy in longing, not to mention my gum. Ugh. I'll have to edit when I feel more coherant to talk more about Christmas. haha!

Wednesday, December 24, 2008

Day 1 after surgery

Now that I'm a bit more coherent than I was earlier I'll be able to write up a better blog post than I had originally typed the same day of my procedure. Right now I'm still in a good deal of pain but its been able to be successfully managed via pain meds. Although I only have four left over. =/ Sadly, I watched Liar Liar today, which is a bad choice for any cleft lip/palate survivor to watch after surgery. I was sitting there and I told my mom that this was a horrible movie choice. She agreed with me. xP But I'm much better than I was yesterday and I can go into a bit more detail of what I went through.

I'm called back into a room to get information taken, forms to look over and to get undressed into those spiffy back open gowns that if you don't wear panties they can see your shiny rear end. I wasn't too impressed with the nurse, she looked like if I decided to look at her the wrong way she would eat me or something. She kept asking me the questions that are normal but I had already answered them at the front desk. Apparently those at the front desk are missing some vital brain parts because this nurse asked me all over again everything that I had told them. She proceeded to badger me about why I was two months late on my period. Ever since I can remember, which is back when I first turned 13, my periods have been irregular. I've been placed on birth control pills but I started to gain some unnecessary weight. I came off of them and my periods got irregular again. Which is fine with me, I don't care. But she apparently didn't believe me when I told her no, I then came back to tell her it wouldn't be happening unless it was the immaculate conception all over again. She finally got the hint and apologized for being a bit of a snot about the question.

I waited for another good half hour to an hour until I could go back. By that time I had my IV started with antibiotics coursing through my system and after my doctor, Dr. Bowers, came into the room, I was given some mild sedation and felt immediately woozy. Then was wheeled back into the room where the operation would take place. I was transferred over to another bed in the room and was laying there when they tried to put a mask on my face. This was AFTER I told them I couldn't have that on my face. I'm deathly afraid of those things and I will refuse to wear one because it makes me feel claustrophobic. I'm mildly claustrophobic and I don't like going under water, under my bed, in super tight places or having that mask over my face. So they didn't put it on my face and I had to suck in the sleeping gas through a tube. I'll have to make sure I'm more firm about the whole IV thing.

I woke up sometime later in recovery where the nurse kept lifting my bed and every time she did I'd ask her why. She'd tell me why every time and I was like that's stupid, I want to sleep. She would just laugh at me and go about her business. I was finally able to get dressed to head on home. Once I was in the car, I can't remember anything until I got home and trudged up the stairs where I spent the first day and night there dozing off intermittently throughout the day and night. I woke up around six and couldn't really fall asleep after that one. I'm pleased to say that I'm actually able to form complex, complete sentences, finally. All in all it was a rewarding process, a bit painful, but rewarding all the same.

At the moment my face is swollen like a chipmunk with nuts in its mouth, my hair is still horribly messed up from the anesthetic and my lip hurts and is still oozing a bit. Not too badly, but just a bit. I've been keeping up with my regimen of Keflex to keep the infection away and using something called Polysporin to keep it moistened there. I have stiches all up into my nostrils and I get them taken out Monday, something I'm not looking forward to, at all. I'm okay with waiting another good week before he takes those out. Then again, I don't know how I'll feel come Monday. But I am almost out of pain meds so I'll have to get some more sometime. Well, sooner than later because I don't want to have to "tough it out" because that, to me, is stupid to do. Pretending you're so strong to be able to "tough" out something like this is just showing me an incredible mark of stupidity. Taking care of yourself comes first, even if you don't necessarily want to have to deal with pain meds.

So this is an obviously more coherent blog than yesterday because I can actually think straight. But I'm doing quite well, very pleased with the results thus far and I can't wait to get the stitches out to see what it looks like. And I might also have another surgery coming up next summer on my nose. I just have to do an online consultation to see if I would be a good candidate for it so I don't fly all the way down to Texas for a bust. Or drive. Whichever. ;P

Tuesday, December 23, 2008

Surgery report

The surgery went well, as I had thought it would be. I'm still groggy but not as much as I would be had I been under for more than an hour or so. I'm in a good bit of pain but I'm managing quite well, despite pain. Before I actually was going under, I had a feeling that I didn't want to go, I didn't want to be put under and I wanted to call off this whole thing because it would feel painful afterwards. Not to mention I was getting restless as I happen to get from sitting still for too long. I'm pleased to say that it went well, my scar revisions will look spectacular, as everything that Dr. Bowers does is spectacular. I can't do enough to sing his praises, all the work that he's done on me is excellent and I'm super proud to have him as my doctor.

This is a short post as my brain is hardly working. I've had to go through an fix typos in this particular post nine times over, but I just wanted to let everyone know that I came out fine, it hurts but I came out well. :)

Countdown to surgery; today

So, I'm nervous. I'm fidgety and I've been moving around a lot, not been able to sleep, the like. I think its because I'm just all wound up. This always happens, even if its something minor. I'm not allowed to eat after a certain time, not allowed to drink after a certain time, I'm surprised I'm allowed to live after a certain time. Quite frankly, I'm half ready to just turn this around and say nope, nevermind! But I know if I do, then I'll regret it because I want this surgery, even if I'm nervous as anything in the world. I'd probably do well with some sleep but I can't sleep. I want to do something productive but there's nothing productive to do. I wish I still had school, in some weird way, so that I would be busy. I swear, I'm going to drive myself bonkers tonight just because of not being able to sleep.

I've been playing Rock Raiders for the better part of the day, trying to calm down a bit but the nervousness gets worse as it gets closer. In about four hours or so, give or take, I'll be waking up and getting on the road to be there by 7 am. The surgery itself won't take place for another hour or so, which is always the case, and then I'll be under for about an hour, possibly an hour in recovery and then on my way home where I'll sleep the rest of the day and possibly the day after. Of course I'm having my surgery two days before Christmas so that'll be fun trying to stay awake during that time and I'll be awoken by my family early in the morning to go open gifts. I'll be happy there but still and all. Sleep is my best friend after a surgery.

So, right now its all about being nervous. And knowing that it'll be alright in the end so nothing is really needed to be worried about. Well, here's to surgeries. Yay? I'll be sure to post something when I'm coherant enough to actually make complete sentences.

Sunday, December 21, 2008

Countdown to surgery; 1 day left

So, my surgery is tomorrow and I'm not quite sure how I feel about it. Possibly anxious and overwhelmed by the possibility of something going wrong, as could happen, and I do have a bit of fear of never waking up from the anesthesia. That's always a concern of that happening, however slim, but I still worry a bit. I guess thats one of those things that'll never go away. I know what to expect because I've been in 34 surgeries prior to this small procedure that'll only take and hour at the most. Frightening nonetheless because I know what I'll feel when I come back out. The same as I always feel when I come out of a surgery; the pain.

I think thats my main fear; the pain. I hate the pain because it's one of those sharp pains that goes deeper than any other cut. But not only that, it'll creep up on you. After anesthesia you're groggy and sleep most of the time so you aren't really aware of any pain that is coming on until one time you're awake and it feels like that part of your body is imploding on itself, the pain is almost unbearable because its on your face. I think thats part of the reason it's so bad. Its your face and your face is one of the most sensitive, actually THE most sensitive, areas on your body. I remember taking a class called Biopsychology and there was a mapping of the human body and the nerves and your face has the overwhelming majority of your nerves. Your hands are second. But be that as it may, your face has bundles and bundles of nerves. So not only does it hurt but, for whatever reason, it decides that it's not just going to stay in your face. Oh no, you're going to have a headache, your shoulds are going to ache and the rest of your body generally feels like crap. Forget the incision, just run me over with a Mack truck!

But I guess its not all that bad since its a small incision, but it seems to make itself worse like the surgeon sneaks into my house at night and decides "lets cut on Melissa more! She loves it" Quite frankly, I could do without it. All of it. But I want to do this because it's for self-esteem and it'll be something that I can look back on and be okay with it. But it doesn't make me any less nervous than what I already happen to be. I mean, its not as bad as when I was younger but... still. Its no fun.

But here's to the countdown: One more day until the big day, Tuesday. Horray?

Wednesday, December 10, 2008

Lip switching

As promised, I'm sitting down to type about what a lip switch happens to be. Its really kinda incredible that they were able to do something like that. But its where they take some of your lower lip, flip it upside down and sew it in place as your upper lip. Its a complex and time-consuming surgery, not to mention it consumed all my time for the next... three weeks as I healed, but its hard to do. Equally so, its hard to see whether or not the tissue thats been misplaced will survive. Actually, its a shot in the dark. The doctor told me, basically, it was going to be a hit or miss surgery. I was terrified of it being a miss because what in the world was I going to do now? I would have been missing my upper lip because the tissue would have died and, not to mention, the fact that they took some of my lower lip away.


I remember when I had it, I went in knowing what was going to happen and everything but once I came out it was a complete shock. Its all well and good when you know something is going to happen but once it does, it leaves you stunned and shocked. I remember waking up and it hurt, of course, but I felt slightly better knowing that the surgery itself had gone well and that meant there was a good chance that the tissue would survive. But then there was that "what if" hanging in the back of my mind as I went through life with my lips sewn shut (literally). It was extremely hard to eat and I lost weight, again, and was down near 105 by the time I could get my lips separated. If you know anything about body weights and heights, I'm 5'8" and that means I should weigh between 125 - 130. I was about twenty pounds or so underweight. I ate through a syringe, again, like when I had had my upper jaw moved forward.


It was three weeks before the surgery to undo my lips and it was a great feeling being able to open my mouth, if only slightly, and be able to eat from something other than a syringe. Still hurt like hell whenever I was trying to eat but the tissue had survived and thus I was able to keep my "new" upper lip.


There is now a scar on my chin and I'm going in on December 23rd to have scar revision surgery on my upper lip. I'm not afraid of it but I don't enjoy the pain and discomfort afterward. I know its kinda silly, but it hurts. It really does hurt, but I guess thats just the price I pay for surgeries, eh? But all in all, I'm ready and willing to take it head on.

On other news, why I haven't posted in a while, I've been busy with school and exams, keeping up with that stuff, doing Karate. Which I've slacked off of because of my sprained ankle, which is getting better but not as well as I'd like it to be. I'm also attempting at starting a forum for cleft lip and palate survivors and the people who know them. Quite frankly, its easier said than done because I don't really have the time as much as I would love to. Unfortunately I've been too busy with other things than dealing with something like that. Yes, yes, its all about priorities, but right now my priorities are with school. But I'll keep everyone who reads this informed of what I'm doing.

If I don't post, it'll be because I'm not able to get on before surgery to write down my thoughts and whatnot. I'll be away for the weekend and then I'll be back on Sunday but Tuesday is surgery day and I can guarantee you that I'll be running around all day Monday to get stuff done. These doctors seem to think that some random person would walk in off the streets and pretend to be me just to get surgery. How unlikely is that? But I'll pacify them and go in. So, if I don't post, thats where I've ended up, I'm not dead. Not yet at least. ;P

Thursday, December 4, 2008

Keeping life interesting

I seem to do the best when I'm at school, as far as posting to my blog comes. Its kinda funny and weirdly ironic that the place where I sometimes have the most headaches I can come and type to my blog without much of a problem at all. Quite frankly, I can think better. I'm wondering if its the multitude of books from nearly every time era that give me some kind of up on my brain power. It could just be the aura that the library gives off; productivity. Which is better than doing nothing.

I've been reading a book called Obsession by John Douglas. If you don't know about him he was a profiler for the FBI and I've read one other book by him; Inside the Mind of BTK. He's a good writer, I enjoy reading his writings and especially about this. It highlights his obsession with solving a crime and getting the answers that he and so many other family members search for. It also goes into detail about the crimes that he has happened to solve and I'm enjoying listening to his obsession as I have my own obsession. Not so much with solving crime but with cleft lip and palate survivors. I adore listening to stories about them. I have a special story about a little boy who found a cleft palate dog. I'll have to find it once I get back home and edit this post with it, but I've got my own obsession.

Insurance companies are one of my obsessions. They push and fight against myself and my family as we schedule more surgeries. All throughout my life we've had to fight to get them to cover even a third. I know I wouldn't have been able to have some of the surgeries that I have had without the help of my grandparents who have been instrumental in this progress. The insurance company seems to believe that the surgeries that I have had are all superfluous. Sure, they could be called that, if you want to. I could have just gone without an upper lip and the bone in the roof of my mouth for the rest of my life. I could have just not been able to eat correctly and been forced the look in the mirror everyday with the painful realization that I could never eat the things that the other kids ate, I could never look like the other kids, I would forever be different. Yes, I am different but I feel I look great. I'm damn glad I don't have a missing upper lip or missing the bone in the roof of my mouth. Quite frankly, the insurance company seems to lose all humanity once they get to where they are and forget what it's like, if they even knew, to have a child with a disability, with a problem, with something that couldn't be fixed with just a hug from mom and a kiss. I feel that they sorely lack a conscience at times and, therefore, need to have some sort of sensitivity classes. Most probably taught by the parents, siblings and grandparents of those children with difficulties in their lives.

I believe my other obsession is to show other cleft lip and palate children out there that there can be a life to be lived. You don't have to be ashamed of what you look like because you look beautiful. Or handsome, if you're a male. You can hold your head up high and say "Yeah, I may look different, but I'm not any different from any of you, I can do everything that you do" and do it. I work a Cold Stone. For those of you who haven't the slightest idea what that is, I go to work serving ice cream and when I get a tip I sing. Yes, I sing. Well, its more of a strange chant, but its the thought that counts, right? But I do that. And yes, I hate doing that but its not because I don't want people to look at me, its far from that, I just don't enjoy having to sing for people (I'm an in the car singer, when no one else is around). I don't want people not to look at me, in fact its quite the opposite. I used to shy away from questions being asked about what was different about my face and now I openly look for questions to be asked. I want to tell people about what I've been through and I want them to know, if they have anyone they know who's a survivor of a cleft lip and palate, that you can do anything you put your mind to. If I wanted to, I could go into politics, run to be a Senator and get into the White House. If I wanted to, I could fly a plane. I go out with my head held high because I've been through this, because its like a badge of honor to show people that I do, indeed, have my scars. I've got scars on the outside and on the inside.

I love to see people who have cleft lips or palates, I feel a sort of kinship with them because I know what they've been through. I know that they're still going through little battles. Regardless of how confident and on top I can be, I still get in the ruts where I hate the way my face looks. Everyone does, I'm no different than the girl sitting across from me on the other computer. I have days where my self esteem goes down, I have days where I would rather stay home than go out but I always remind myself that those days will pass. They always do. Being a cleft lip and palate survivor can be trying at times because you know people will look, people will stare and people will oogle at what you look like, what you've done and how differently you look compared to the person next to you. I know that I look different and I still get stares. I recall once after my lip switch surgrey (which I will explain later in another blog entry) I told my mom that I would claim that I got the scar from a bad car accident. I now wouldn't claim that at all. I remember that was in the time where I was also having a battle against my self esteem and I hadn't managed to love myself in the way that I should. Now I would tell people what happened, how the scar on my lower lip is where my current upper lip used to be. It amazes people to know that you can go through that and be okay with yourself.

Another thing I've become obsessed with is learning everything and anything about cleft lips and palates. I've become a novice expert at what I have and what I've done throughout my life. I'm proud to look back and see how well I've done. I just have a hope that I can reach out. And that's another obsession; to reach out to cleft lip or palate survivors and their parents. To let them know that they're not alone, if they can't see any others with that same problem, that there are many people out there who have struggled just as they are now and that it'll be okay. Everything will be alright, you'll find that life isn't easy but that you can make it through anything if you set your mind to it. I believe that nothing is impossible (aside from the logical impossibles like walking through a wall or something like that (had to add that in because my brother always counters with something like this haha)) and that cleft lip and/or palate survivors actually have a leg up on things. They've already been through hell on earth and life afterwards will be nothing more than a walk in the park. Strangely enough, the more you look at it from all sides, the more likely it becomes that and cleft lip and/or palate survivor will accomplish the unbelievable.

My favorite quote comes from my grandfather on my dad's side. No matter how frustrated at him I can get for him suggesting jobs (but I appreciate it as its done out of nothing more than love) and talking to me about what I should or should not do (again, out of love) I feel amazed when I hear him, as always, say "Is this the prettiest girl in the whole wide world?" like he knows what I needed most when I was younger. Only now have I gotten to the point where I say "Yeah", I used to say "Maybe" or something like that. He knows better than anyone that I needed help for my self esteem, still do at times, and it makes me smile. Thats the best quote ever because it tells me how much in tuned with me he is. Maybe it just has to do with the fact that he can be the most like me or, somehow, he knew that I would need some help with my self esteem, but he knows me so well. I remembered when I finally figured out this little tidbit of information and it made me realize how lucky I am to have people who do give a damn for me. And someone who will constantly tell me how I'm pretty further letting me realize that I am pretty.

And these are my musings for today. I'll go into detail about a lip switch in another blog entry as I have to head on over to my next class. Enjoy reading!

Monday, December 1, 2008

Therapy and stuff like that

Here I am, once again, typing from my school's library on the blog. Its not a bad habit to form, actually, getting through the day with nothing more to do other than schoolwork can sometimes be a drag. I do have two presentations that I have to get finished and get through over the next week so I've been doing that as well, not to mention working on papers. School is nice and all but sometimes you want to have a reprieve from the ongoing stress of being a student and having to make good grades.


Anyhow, thats not what I wanted to talk about, in fact, I had wanted to touch on the topic of therapy. Sometimes its a hot topic to be brought up in many households and among many social circles about the benefits and the harms of therapy. I, personally, don't think there is any harm to come from sitting on a couch, so to speak, and chatting about problems to a third party who stands on the outside looking in and offers you good advice on how you should conduct your life, if you want to listen, and gives you advice on problems that you have. From personal experience, I've done well in therapy and I've come out with many things that I can use to help me benefit not only my life but the lives of others. I've already helped a number of people through their own problems and I've been able to help some people through virtue of improving their friends' lives. Through many people I've come to find out that therapy is a good field to go into, not myself because I couldn't see myself sitting in an office every day, day in and day out, listening to problems. Sometimes the people I talk to refuse to take my advice and I want to give them a good smack upside the head, but that's generally not the majority, thank god.


I'm talking about therapy as far as being a cleft palate survivor. I was teased horribly when I was a kid, those kids showed no mercy when they went after me. My, my, my. I have never seen a group of kids that were as nasty as these kids happened to be. Quite frankly, I've never managed to even think of kids who would have been this nasty, thankfully, since then. But I haven't been paying attention to much in the public school system since I was pulled out of it at the end of the fifth grade when I was failing every class I took. I was happily homeschooled until I became around eigth and then placed back into a school that I call a concentration camp now. Only because of the strict rules and guidelines that were made to be followed if you went to said school. But thats not what I want to get involved into, instead I want to say how it benefited me. Sure, it happened to be a mini hell as far as rules went, but the social interaction benefited me and I was able to see that I wasn't all those mean things that those kids had said. Unfortunately I didn't know what I did now and I still had those thoughts controlling everything I did, so I was stuck, in that aspect.


Right around the end of the eighth grade and on into the ninth was when my life really began to unravel. The only reason it had stopped itself from unraveling was because of my dog, who I still have today. Dogs are excellent therapy, I know I wouldn't be here except for that little ball of fluff I call my baby. But it doesn't last, as far as therapy goes. Sure it was great but the stress of social interactions took its toll on me. I remember sitting across from my friend who was taking a test and I wanted to rip the pencil out of her hand and stab her with it because she was taking it too slowly for my liking. Not to mention the feelings of drowning when I lay in my bed at night watching my lava lamp marveling at how it matched the inner turmoil inside me when the sparkly pieces of confetti swirled about. I finally told my mother because I just couldn't take it anymore, I told her I felt sad, that I would feel like I was drowning at night and I didn't know why. I actually wanted to stop drowning and just die already. Its a horrible feeling, the drowning, because you feel like you're suffocating on your own emotions but you don't know what to do about it. Not to mention you have no idea what is causing it and you're helpless to stop it. When I was that young I had no idea what depression was, much less what was causing my problems in the first place. If I had, I most probably could have solved them on my own but I needed some help because I was so young.


My mom decided that it was too much for her to handle, thankfully (because I don't think I would have done as well had she not sought outside help for me), and got me in to see a therapist. My first therapist was a bust. I remember standing outside her office after one of my sessions and my mom patted me on the rear (something I didn't like) and my therapist got onto my mom about it when I said I didn't like it (also something I didn't like) and because of that comment, I decided I wanted another therapist. I felt that her getting involved, directly, was unacceptable and I felt that it was time for me to find another one. I did and that was the best decision ever because I have managed to find so many helpful tips and tricks to aid me in my life that I feel I can just go about doing anything without her help anymore. But I still need to work on some things but the majority of the things that involve myself and my cleft lip and palate are out of the way. I feel fully confident of myself and I feel like I can take on the world now, not to mention my self esteem is great and I believe I am a very beautiful person. I use the analogy of coming from a caterpillar to a butterfly or the ugly duckling blossoming into a beautiful swan. All the people who have teased me only have aided in who I am today and I feel powerful in the knowledge that I am okay.


But beyond this, I remember the multitude of times that I would keep the therapy a secret because I felt that it was a taboo topic. In many cases it still is. I've noticed this when I bring up that topic people become uncomfortable and many change the subject because of it. I, quite frankly, feel that it's not a good idea to believe it to be a taboo topic and, instead, to talk openly about it and not feel ashamed. I know that it's going to take a bit because only now have people been able to come "out of the closet" so to speak about their therapy. I remember the many times that my dad would frown upon it and, not openly, try to dissuade me from ever bringing it up or even going. I would hear, second hand, that my dad didn't agree with the fact that I was going and felt that it was a bad idea. But by that time I had made so much progress that I felt it was a good idea. Sadly, however, I fell under the impression that therapy doesn't help and that you shouldn't need therapy to help you through your problems and ended up sliding backwards in my one year stint away from the psychologist instead of keeping up with the treatment like I should have. That all happened because I had a friend who I thought had bigger problems than I did and therefore believed that if she could do it without a therapist I could. While she had "bigger" problems than I did, so I thought, her own problems were bigger than mine because I wasn't in her shoes. Think about it; your dad is abusive or something, your mom doesn't seem to care and you can do whatever you want, your brother is a druggie and alcoholic, maybe its your sister and she's a prostitute and maybe, just maybe, you're in a abusive relationship. Those are some pretty big problems, are they not? But they aren't bigger than your own problems. Your problems are big to you, and thats really all that matters. If someone says that they aren't big enough to see a therapist about it, tell them that they can go jump in a proverbial lake because, quite frankly, they couldn't handle your problems. The problems that other people have, like the abusive father that I gave a hypothetical situation for, you might not be able to handle but someone else can. Your own problems, whatever they may be, are yours for a reason. Because you can handle them.


Take my brother and I for example. My brother has bad acne problems, he's tender-hearted and he believes that everyone has a heart of gold just like he does. He's extremely social and gets hurt easily by the things that people say. I think that he is a marvelous guy with the biggest heart around. Not many people think the way I do and get to see him the way I do either. But, anyway, this isn't the thing. Then look at me. I'm a cleft palate and lip survivor, I was teased until I cried every single day when I was younger, I'm diagnosed with clinical depression, major and minor depression (also double depression) and I go see a therapist every Tuesday. I was near suicidal before I got my dog and she managed to postpone it until I told my mother what was going on. My brother couldn't handle my situation and I couldn't have handled his. Why his problems look like they're nothing, right? But they're big to him, they're big to him because social problems are all his life, they're everything to him. Social problems don't consume me like they do him. If a friend of his has a problem with him he'll do anything to fix it. If I friend of mine has a problem with me, tough. They can pretty much either suck it up and deal or they can vamoose. While I'm working on that, he doesn't have to work on it at all. He has a multitude of friends while I'm just now getting a social life at the age of twenty. Like I said before, he couldn't deal with my problems and I couldn't deal with his. We are totally different people and we have our of set of challenges and neither of us could take up the other's challenges because of this.


That is another reason why I find it completely silly and juvenile that someone decides to say that another could just "get over it" and not even attempt to see it from their side. Quite possibly this person could have been sexually abused by their dad, you don't know that. This person could say just that they're going for therapy and not say why, then you pop out of the blue and say that therapy is a bad idea and they should just "get over it". Do you have any idea what that could do to a person? If the person is fragile enough or actually cares enough about what you think then it could possibly alter the course of their lives forever. Not necessarily for the good, either. I say this because so many people are insensitive about the issue of therapy. My grandparents on my father's side are, which is why I don't even bother bringing it up to them because I know that I'll have to fight for what I want to say and how I want to say it. They're not bad grandparents and they're not wrong, but they grew up in a different time and they have a different set of values and beliefs. They think that people shouldn't have to see a therapist and they think that if you can't pull yourself up by your boot-straps and get on with your life then you're weak. I don't believe that, I'll never believe that, because I believe that everyone should be able to have the right to therapy if they so see the need for it. I know I did because I felt that it was the best for me to do. You might be sitting here reading this and say it's not for you, good for you! I'm pleased that you have the foresight to see what you do and do not need in your life. If you can do this, then you've grown in more ways than many people do in their whole lives. And if you're sitting here thinking that therapy would be a good idea for you to get rid of all the harmful things in your life or you are actually in therapy, thats excellent for you because, like the person who says they don't need it, you have the foresight to see that you do need some therapy.

I've met many people who seem to think that those who go into therapy are somehow weaker. I've always thought they were stronger because they had the guts to seek out help when they realized that they couldn't help themselves or that what they were doing wasn't enough. I feel that people who see therapy as an "easy way out" or something along those lines are simply ignorant. Its certainly never an "easy way out" because you have to work for it if you want to be better.

I guess what I am trying to say is to never be ashamed if you need to go see a therapist, or that it is seen as being advantageous of seeing a therapist. Certainly it would be in your best interest to make sure that you have the best life that you could possibly have. If that means going against your family's views then it means doing that; do it for you. As a cleft lip and palate survivor I feel that it is right to share every bit of what I went through, even the most painful parts because I feel that it will more fully help someone if they stumble across this and are going through the same things that I am or have gone through the same things that I have gone through. I've learned a lot being in this situation and I've never once felt slighted, I've never wanted to change who I am. Sure, I wished the pain would go away after a surgery and that I might look more normal, but I don't look back on my experiences and wish that I hadn't gone through that, instead, I'm glad I went through that. I've helped many along the way and I've helped myself, I wouldn't be as strong as I am today, I'm sure of it, if I didn't go through this. I'm glad I survived and I hope that this blog, as well as this post, will encourage anyone, even if you're not a cleft lip and palate survivor, to seek help if you need to. Don't be ashamed. You're your own best advocate and you need to stand up for you.

Saturday, November 22, 2008

Well...

Its been an interesting weekend. I've gone out with my mom shopping and enjoyed hanging out with her. Then I came home to vegetate for a bit, but I figured I would update the blog as well, considering I've tried to keep my word on keeping it up and published to regularly. While I might not have expressly laid it out, I'm trying to keep up with it.

Anyhow, I went to hang with a friend of mine who has an autistic four year old and a lovely two year old and we worked on her horse. It was nice to see her, she's been doing well, and although her dogs have chewed up her house (namely one) she's managed.

I've been trying to get an internship going with a local police department but it's not working out as well as I had hoped. I was hoping to get an interview this Friday but that didn't pan out and I'm stuck with waiting to get a call from one of the guys I called on Thursday. But I did go hang out with another friend, even if it was just to watch the movie for our Abnormal Psych class, it was still fun getting to hang out with her. Although I was rather disturbing with all my coughing, haha.

In other news, we're trying to plan things around the small scar revision surgery that I'm going to be having December 23rd. It'll be interesting to see how I'll do after that one since I'm not going under at all. I am, however, terrified of those tools. Since I KNOW what they're going to do, I'm not going to be pleased with seeing them nor will I be able to sit still while they do whatever they're going to do to me. So I'm going to have to have a nerve pill, I wish I could just drink a ton of alcohol but that would be so bad for me. They'll be putting a block into my lip and cutting out some of the scar tissue to make it appear smoother and such. I also have to do an online consultation for my nose with a doctor down in Texas who is apparently the best as nasal reconstructive surgery.

Many people would probably wonder why I would put myself through another nose surgery if my nose is "fine". Well, I don't really like it and that's all that matters. Since I'm still under my parents insurance, we're going to take care of it. Now it's just a matter of self esteem. While I'm perfectly happy and can live with what my nose looks like, if I can change it, I will, if I can't, then I'm perfectly fine with it. I don't have a problem either way. Probably a reason why I'm sort of procrastinating on my online consultation with this doctor... Not to mention some drama with school cropped up over this semester, which is unfortunate, but what can you do?

I registered for this upcoming spring and apparently since I had gone to one class before (I wanted to take it again because it was SO fun) it didn't put the rest of the classes through. And you know how you get that feeling like there's something wrong but you just don't know what it is? Yeah, I got that feeling and it turned out that the classes hadn't gone through and I wasn't registered. I freaked and went to the guy who had emailed it to me and I find out that the computer system simply works that way. Oh, wonderful! Now I have to go register for crap classes that I don't care about and I can't get the ones I WANT because YOUR computer system screwed up. Thank you!

I'm gonna go work on my schedule in a bit, probably after I sleep, and get rid of something that I added in there only because my professor said I could. Adviser, I should say, but according to a friend of mine over half the people she knows barely passed it because you have to go to all sorts of crap on campus. Which wouldn't be a problem if I lived ON campus, but I don't, so that is a problem. The only reason I don't live on campus is because my dog is getting older and she sleeps on my bed so I don't want to leave her with no where else to go. Besides the fact that I love that dog so much I'd be more than willing to give up living on campus for her.

I really need to get to that online consultation with the doctor. This means taking pictures. Lovely. And if I qualify, then I'll go down to Texas to meet with him in person. This saves my family the whole buying-a-ticket-just-to-find-out-I'm-not-a-good-candidate problem.

Saturday, November 15, 2008

Just general

In all this blogging about what a cleft palate is and such, I've neglected to let people in on how my life as a cleft lip and palate survivor has been going. I fail, yes I do.

I'm twenty and go to HPU as a Criminal Justice major and I'm set to graduate... 2010 or something like that. I've got expectations to go on to become a Loss Prevention Analyst and I live with my parents, dog and two birds. Oh, and that snot nosed brat called a brother. Although I shouldn't call him that, I love my brother. He's a great guy and has been throughout my life. Sticking up for me as I've done for him and he's even said he would take my place, which is a sweet sentiment but I don't want anyone to have to take my place.

Anyhow, I'm writing this from my school's computer as I wait for my next class to start. These past couple of weekends have been busy as you know what. I've been barely at home and I'm glad of that. At least I'm getting out and having fun more. Which is something I've been working on as of late. I recently went to a Panthers game, Sunday, and I had a blast with my three friends who I went with. Eric, Brian and Philip B and I went down to Charlotte and we planned on buying tickets from scalpers down there. We got there around 10 or so and we went on a hike through downtown looking for scalpers. We found some great tickets for the Upper Deck on the 50 yard line for about 50 bucks. We got those and then went to get some food before we hiked back to where I had parked to get cameras and such. Unfortunately I forgot my camera, being the forgetful person I am, and sadly didn't get any pictures. :(

We got back to the stadium and let me tell you this; it was the most amazing experience I have ever had. I cannot believe that I waited this long to go to the stadium. I was amazed and so grateful that I was there. It was incredible. I could have stayed there forever. I loved the game and the fact that the Panthers won was always a plus. CARDIAC CATS! WHOO! But the best part was spending time with my friends, they were great fun. Then they fell asleep in the car while I drove home. haha. I drove both ways but I was okay with it, and they slept. I was tired like heck once I got home and about fell asleep on the drive home. Luckily the music was going, otherwise I would've been in a wreck.

But that Saturday I got to hang out with one of my friends who had been in Afghanistan for the past year, Josh, and Heather, Philip H, Eric, and Jeremy. We all played Rock Star, I beasted Halo and creamed Jeremy into the ground after Eric and Josh decided to call it quits. It was great fun. Unfortunately I had to work Wednesday. I don't mind working because it's just another job, but I don't really enjoy the fact that I don't get paid that much, it's purely a minimum wage job at Cold Stone but it's good for me. I meet a lot of interesting people (and people who can't order ice cream to save their lives) and I have to say that it makes me feel good that I can do a job that puts me out in the public eye as much as I am and not feel like I should go and hide. Self confidence is the best, and for someone who has been through the trauma of being a cleft palate victim, that's simple incredible.

I'm very pleased with the busyness of this week and I've got another thing planned for Friday, I'm heading to a friends house to watch a movie, after I work tomorrow, and then I am going to be watching the Panthers game once again on Sunday with my friends.

So, while I'm going to pepper this blog with interesting resources and tidbits, I want to make sure that I chronicle my own adventures to show you what you can accomplish as a cleft lip and/or palate survivor. It's awesome, once you get past your own demons with your treatment, to look back on your life and say "I did it" and then to be able to look forward and say "Bring it on!" Here's to life and living it to the fullest!

Friday, November 14, 2008

What is a cleft lip/palate?

According to Wikipedia: Cleft lip (cheiloschisis) and cleft palate (palatoschisis), which can also occur together as cleft lip and palate are variations of a type of clefting congenital deformity caused by abnormal facial development during gestation. This type of deformity is sometimes referred to as a cleft. A cleft is a sub-division in the body's natural structure, regularly formed before birth. A cleft lip or palate can be successfully treated with surgery soon after birth. Cleft lips or palates occur in somewhere between one in 600-800 births.

There are three types; an incomplete cleft (where there is a literal hole in the roof of the mouth but is easy to fix with surgery), a unilateral cleft (where one side of the palate (roof of the mouth) is missing) and then there is the bilateral cleft (where both sides of the roof of the mouth are missing). The bilateral cleft is the worst and hardest to fix. I ended up with the bilateral cleft. Here are some visuals:


This is the incomplete cleft.

This is the unilateral cleft.

This is the bilateral cleft.

Normally when a baby is born there is an assembly of what is called a Cleft Palate Team. Unfortunately 20 years ago, we didn't have that and my parents put together their own Cleft Palate Team which consisted of doctors named David Bowers, Scott Rehm, and an Orthodontist (who did my six years of braces) Gary Jacobs. Sadly, Dr. Jacobs passed away in a plane crash. But they were and are my doctors. They are all great doctors with wonderful experiences that I've had with them. Although I didn't always enjoy going to the Orthodontist (I could have sworn that the drill was attached to his hand...) he did what no other Orthodontist could have done; straighten my teeth.

It's common that those with a cleft lip and/or palate will need speech therapy. Personally, I've always had trouble saying my R's and still do. I can't say a string of words with W's and R's in it such as "were we right".

Surgery to correct a cleft lip and/or palate is now relatively easy and it's not as common for a child to go through a multitude of surgeries (say, 34 like me) and instead only have a few surgeries younger in life. Although that can also be modified as the child gets older and they want cosmetic surgery. I'm doing so at this moment, I'll be getting my nose done once again, if the doctor in Texas thinks that I would be a good candidate.

I still have a hole in the roof of my mouth that was opened up by another surgery (they brought forward my upper jaw and spread the palate to fix my underbite) and will always have that. Otherwise I'm pretty much all fixed, if you could call it that. I happen to be very pleased with the doctors who treated me and I will have their numbers at the end of this post.

Another prevalent issue with cleft lip and/or palate children are issues in school. A lot of the issues are of children teasing the child who looks "different". Unfortunately there is no cure for that, even homeschooling doesn't help unless you know what you need to do as far as socializing the child. It's common that children are treated differently because of the hardships that they go through and that is frowned upon by the owner of the blog site. I wouldn't have wanted to be treated with a feather just because I was different from my brother and my parents, they refused to treat me any differently than my brother. I'm grateful for that because I may have ended up coming out much worse. I believe that children who have a "disability" and are treated as such have a different outlook on life. As it is, I'm a very normal 20 year old with a very average life. I believe that you are doing your child a major disservice if you treat them any different than any other child.

Also, something else can develop and that is depression. Normally it stems from poor self esteem and can also come from a family history. But for the most part it comes from all the teasing and heckling at school. I don't believe in the phrase that "kids will be kids" because that's simply intolerable. I believe that kids are only the way that their parents raise them and obviously they learn what they do when they're at home. Anyhow, it's not uncommon for depression and poor self esteem to develop. A way to combat this (without needing a therapist) is to just be open with your child and make sure that your child knows that s/he can come to you for anything. Be close with your child. I can tell my mother anything and everything about my life, she knows all my up's and down's and I share with her everything. It all comes from her being there for me. Another thing is for you to make sure that any issues in school are resolved. If that means taking it to the board of education, then by all means you do it. If that means getting the court system involved, then you do it. Nothing can be spared when it comes to your child. And I mean nothing.

This is a bit of briefing on a cleft lip and/or palate. Here are the numbers for my doctors, as I mentioned earlier, for you to call/look up if you need to:

David M. Bowers: (336) 275-0919
Scott R. Rehm: (336) 621-1554

Both of these doctors are exemplary. Tell them that Melissa Whiteman sent you and they'll know exactly who I am. ;)

Thursday, November 13, 2008

Survivors

I've noticed over the years I've gotten a lot of comments about what I've been through, what I'm going to go through and the like. It's always interesting to hear what people have to say after I inform them what I've been through. Almost like I get feedback from what I've had happen to me. But I wanted to debunk some of the common comments that people seem to leave.

The first one is one that I hear an awful lot, it's not bad, but it's not the greatest comment to receive: "I'm so sorry for what you've been through!"

Don't be sorry for what I've been through, don't be sorry what I'm going to go through. Be happy that I survived it. I'm sure not sorry for what I've been through, in fact I'm very happy with what I've managed to accomplish and what I've been through. It's made me stronger, it's given me so much more power over my life knowing that what I've been through is always so much worse than what I'll ever go through again. And if I can survive that, I can survive anything.

"You're so brave, I couldn't have done that!"

You don't know that. Given the situation, what was I supposed to have done? Curled up and died? Gone away into hiding? Killed myself just being an infant? I had no choices with what I was supposed to do, how I was supposed to react. Thank you for saying that I'm strong, because I believe that I am, but why do you say you couldn't have done that? Anyone can do anything. Don't sell yourself short, that's the problem a lot of people have they sell themselves short by saying that they couldn't do this and couldn't do that. You can do that, you just didn't have to. You would have done it because there was no other recourse. Just like I had no other choice, I did what I had to do to survive.

"Good for you, I'm proud of you."

That's a great comment. Just great. And no, there is no sarcasm as I type this, but this is one of the better comments. Why? Because I feel pride when I look back on what I've been through and I wouldn't change a thing. I never would. I would do it all again and again, because I know it made me who I am today.

Those are really all the comments I can remember at this moment, but there are bound to be more. I just wanted to share with you some of the most common ones that I get and that I know other cleft lip and palate survivors receive.

There was also another reason why I called it a blog for cleft lip and palate survivors rather than patients. Because we are survivors, getting through one of the toughest things around for a kid and if we make it, we've managed the almost unthinkable, according to many people. I just feel it's much better to call us survivors because that's what we are; survivors. But this is what I wanted to address, because it's one of the most common misconceptions for those of us who've been through this.

Story of a girl

There was a little girl who was born about 20 years ago. This little girl was born with something called a cleft palate. Back when she was born they didn't really understand what to do with a girl that was born with a cleft palate. All they knew was what was in the textbooks and this was far from textbook. It was one of the worst cases that they had ever seen, possibly the worst. But they were willing to try, as long as the mother was willing. They asked the little girls mother and she said to do anything to make her baby had as normal a life as possible.

As with any mother who was confronted with this, the little girl's mother was scared to death of what this could mean and she didn't know what to do or who to turn to. Unfortunately all they had were pamphlets about the generic cleft palate that would only take a surgery to fix and she knew, somewhere in her heart, that her little girl was going to go through so much more than just that.

She was right. The first surgery was when the little girl was about two months old. The little girl went through five surgeries in her first year of life and was in pain much of the time. There was a reprieve when they moved from where they lived in south Georgia to North Carolina. But they had to find more doctors and now that the little girl was five, she had to go to school. School was hell on earth for the little girl. Every day she came home crying, someone had teased her once again. This made her feel like she was nothing. They told her as much when she was in school and she just didn't know what to do.

As she continued to go through the torture at school, it began anew when they started the surgeries again. This time she was spending prolonged periods away from school for doctors appointments and illnesses. Much of which were faked, she didn't like school.

In between the surgeries, she learned how to cope with the problems she faced at school by becoming the bully to get them to stop picking on her. She was a smart little girl and tried to face up to what they were doing to her by focusing the attention off of her and onto other kids in her class. But it didn't last long, she wasn't picked on again, but she was failing school because of her inability to socially interact well with teachers, students or other faculty members. Her mother pulled her out of school to teach her at home, despite all the negative feed back from her husband and other family members.

The little girl actually blossomed in that time period, she actually did quite well and began to gain some self esteem. She got out more and played soccer. For the first time in her life, she had a friend. It was a great time for the little girl and as she learned more and more about herself. As time continued on, she grew into a young woman with a successful college career and being able to hold down three jobs despite how she had come in life. Throughout life, she has faced tremendous adversity and only overcame it through the strength of herself and her parents. Namely, her mother.

That little girl is me. I was born with a cleft lip and palate. I had no upper lip, my nose was collapsed and I had no bone in the roof of my mouth. Throughout my life I have had thirty-four surgeries. At this moment, I'm preparing for another one, I'm going to be going through a surgery to do some scar revision on December 23rd. I'm only now doing what is called "touch up" as far as surgeries go. It's been a long and hard road and I've been through my fair share of up's and down's.

I got an idea to do something like this a couple years back. I didn't really know what to do with it and fiddled around with a board to open up to people, contacted a few people that I thought might would help but got nothing and therefore decided that I wasn't going to do it. I got the thought, once again, about a couple days ago and I decided that I was actually going to do something about it. No, I might not get anyone to actually look at it and benefit, but I want to try. I know what it's like to go through hell on earth and I want to help other cleft palate kids and their parents through their own difficulties.

Of course my mom would be moonlighting on this site as well, but it'll mostly be me, Melissa, posting to this blog with different things that I find out, little tidbits about myself and what I've been through, as well as any conversations that I've had with cleft palate patients or their parents. But since I finally, actually, sat down to do this, I figured I could also offer some good resources for those parents that are in the same position my mom was in twenty years ago. But, anyhow, this is just an introduction, stay tuned for more!