I just wanted to briefly write and update you on what is happening because I am going in for an emergency procedure tomorrow (well actually later today). I know I told you that I would keep you all abreast on all that is happening and that is why I am writing now. I am extremely nervous and of course in pain, so I don’t know how coherent this will be… but I will try to explain all that is happening.
I have to go for an emergency procedure today because of so many reasons. First off… the osteonecrosis is worsening so much that the jawbone is protruding through my mouth more than ever. In addition, I am having teeth and the nerves of teeth being exposed and the teeth are also dying. As a result, I am in a lot of pain. There really isn’t anything that they can do because not only is the jawbone dying, which is the osteonecrosis, but the teeth are dying as well. Something really needs to be done because not only can I get a really bad infection, but I am also in severe pain.
I have been in the worst pain imaginable because of all that is happening. Not only are the teeth dying, but the roots of the teeth are all exposed as well. Therefore, I constantly feel this gnawing and electrocuting pain that shoots from my mouth all the way up to my brain. It isn’t like I can’t bite or chew. It isn’t per se something thing wrong with the tooth itself, but rather it has to do with the tooth internally and the nerves. You know? Therefore, whenever anything touches the tooth or I drink or eat something, the teeth are extremely sensitive because the nerves are all exposed instead of being ‘covered’ like in a normal person. Whenever I eat something or drink something, I will get the worst imaginable pain ever. It will feel like I am getting a ‘tooth freeze/brain freeze’ and it will stay there for about an hour or so. You know when you eat something that is extremely cold and you get that severe pain in your brain and tooth that you call ‘tooth freeze/brain freeze?’ Well… that is what is happening to me every time I eat or drink anything because the slightest change in temperature that hits the tooth or bone sends me running for the hills since the nerves are all exposed.
I have been suffering for a while, but it is at the point that it can’t be controlled anymore. Ideally, the surgeons would like to have me admitted into the hospital and have the teeth removed. That would be the best option. However, I do suffer from osteonecrosis and they feel that if they were to do this, it would only worsen things and cause further problems. They are so worried that I would never heal and they are worried that the bones would die even faster since I already have the osteonecrosis affecting me in those areas. I have the most intelligent doctors in the world working on my case. They are like world renown. In fact, my doctor actually had a meeting in the hospital to discuss this matter to try to figure out what the best thing to do about this situation is with my other doctors that are supposed to be world renown in the osteonecrosis area. So…. We are really hoping that we are going about this the right way. So we are proceeding with doing a procedure that will be ‘keeping’ the teeth, but it doesn’t meant that in the end the end result might always be that the teeth will have to come out. We are hoping it won’t come down to that because like I said it will make the osteonecrosis worse and such, but we don’t know in the end if that is going to be the end result after all.
Since they cannot remove the teeth like they really wanted to do in the operating room, they are doing another procedure where they are going to be doing really intensive root canal. Hopefully it will try to ‘save’ the teeth from being surgically removed, but they just don’t know if that will be the case. I have already started part of it because they wanted to try to ease some of the pressure and pain until the actual procedure (which is happening later today), but it has only worsened things.
I am one really complicated and mysterious person. The doctors thought that they would start the procedure the other day to try to relieve some of the pain and to try to give me some relief that will hold me until I had the actual procedure. However, it really was filled with complications. We found out that the gas really didn’t help that much and all the novocaine that was injected into me didn’t do really much either. With my illness the way it is and how I am so tolerant to all these drugs and such, the gas basically did nothing and after getting so many shots of novocaine, it only gave them a window of like less than 30 minutes to work. They thought that I would be kept comfortable by this procedure to a point that was more tolerable until I would have this procedure later today especially since I would be ‘numb’ because of the novocaine, but the novocaine just didn’t work. In addition, even with the entire root that the doctor did remove and with him putting in the medicine to kill as much root as he could, no pain could be alleviated. I was in really bad shape. I was given so many injections that I really couldn’t be given anymore because he was so afraid that my mouth would literally explode. After all, I am so small and he did give me so many already. There is only so much fluid that a mouth can hold without ‘exploding,’ you know? You can only fill a balloon up so much before it pops. LOL.
The teeth were so rotted and so dead that they gave off such an odor when the doctor went in and removed part of the root to try to alleviate some of the pain and to hold me off until I had the major procedure today. My mom was in the room and she said that she never smelled something so horrendous. It turns out that when you have a dying tooth or something, it gives off this distinct and horrendous odor.
In addition, the doctor also packed up the tooth as well because the tooth was all drilled out. However, me being the way that I am and being as complicated as I am ended up pulling out all the packing later that night as well. So… I was even in more pain than ever. I tried taking all the medications that I could… Tylenol, Dilaudid, Methadone, Morphine, Ketamine, etc. but nothing was making a difference. The doctor told me that I would be feeling better that night and have some relief because of the procedure that he did earlier and how he injected some of the medication to ‘kill’ the root and how he took out lots of it as well, but to tell you the truth… it didn’t do anything. Not only that, but the tooth was draining and all the infection and medication was draining into my mouth and was making me nauseous. I have severe GI problems as it is and suffer from severe nausea too as it is already… this only made it worse.
So I am off today to the surgeon to have this procedure done. He is going to be removing all the roots of the teeth. He is going to be going into every single canal with microscopes and such to remove whatever nerves he can find and such. I am so very nervous because it is going to be so painful. Everyone says that I will be in very good hands, so I am hoping they are right. I am really freaking out though to tell you the truth.
I am really nervous though because to be honest with you, we really cannot afford this. As I have told you in the past, my medical treatment is extremely expensive and we are having a really hard time affording it. We have tried so many different ways to raise funds (i.e. Facebook, writing to the media, websites, hanging posters, YouTube, etc.) but nothing really has worked unfortunately. We need help more than anything in the world because we definitely can’t afford my medical treatment on our own. It is at the point where I really had to make drastic cuts in my treatment and have basically put a stop to certain aspects of my treatment because we cant afford it. It is really jeopardizing my life a lot because I don’t have time to spare. I am literally hanging on by a thread and the doctors said that if something isn’t done quickly, I am not going to make it. Yet, it is impossible to afford all the treatment that I need by ourselves and unfortunately we are not receiving the necessary help that we really need. I really wonder that it would be like if money didn’t exist in today’s world.
I am really nervous because this procedure in itself is so very expensive. At the very least, this will be costing me nearly $3000. The doctors are giving us discounts, so I don’t even want to know how much it would cost without the discounts. But even with the discounts, I don’t know how on earth we are going to find a way to do all this. But this is something that has to be done. I only wish that I could get the media’s attention so that I can get my illness and the much-needed attention that I need to raise funds. I desperately need it. The slightest amount of money will go such a long way because even one dollar is one less than I have to come up with.
To make matters worse, I really need to have tubes put into me ASAP in order to have TPN. Like I said previously, I need a multivisceral transplant as soon as possible, which includes getting a new stomach, small and large intestine, pancreas and liver. I need it more than ever because I am so sick. However, it is at the point now that I am too sick to get it and if I was to get it… I would be dead within a week. Therefore the doctors want to put tubes in me to get me stronger so that I can get the transplant as soon as possible because my life is literally hanging in the balance. I desperately need something done because they never saw anyone so sick as me… someone as low in weight or in BMI as me.
With everything happening and my disease being so complicated, I really can’t just go anywhere to get things done. I need to go to special places across the country because of how complicated I am. Not many doctors are familiar with my illness or are able to handle my illness. However, one place that I need to go is to the MAYO CLINIC. However, they don’t quite take my insurance and to go there it is quite expensive. I went there previously and just spending a few days there ended up costing me at least $6000 in medical bills (and that is with the insurance paying a lot of it too). There is definitely no way I can go back to have this procedure without help because it will be far more costly than that. I really hope that it will work out though because my life is literally hanging out on a clothesline out to dry and it is ready to snap. I need to get help there immediately because I am running out of time and that is the best place for me. So I am hoping that things will work out, but I am being realistic that things might not.
Something has to happen though and happen fast because I am really weakening. I basically can’t get off the couch. I basically am up in the morning and that is about it. I collapse definitely by the afternoon and I am going to sleep earlier than ever. My parents are having to just get me up nowadays to take my medication. I am just getting so weak.
In the meantime though… I guess all I can do is pray and hope that something happens. I just have to hope and pray that I will be ok. I really want to thank all of you though for helping me get through all that I am dealing with and for helping to spread the word of my website as much as possible. I would have never made it this far without you.
This past weekend, we also had a photographer take pictures of my family. It really meant a lot to me because I wanted to have my family have pictures of me with them if something happens to me because I want them to remember me. I know how bad things are getting and it was really important for me to have them have these pictures. I was really fortunate that a photographer known as David from “David Cerezo Photography” was willing to take pictures for us out of his goodness of his heart. We had such an amazing morning with him and the pictures came out absolutely amazing. I am definitely going to treasure these pictures forever and ever.
My mom and I got our makeup and hair done for the pictures and in combination of that with the excellent skills of the photographer… the pictures came out absolutely superb. I can’t even believe how beautiful I look in the pictures. If I didn’t know anything, I would never know that I was ‘sick!’ It is amazing what a little makeup and a great photographer can do! I am really self-conscious about my face and the lines that I have because I really don’t have any muscle or ‘tone’ in my face. However, I am so thankful that the photographer was able to touch up and able to hide all those lines because my face literally has lines because there is no tone or muscle underneath.
Max was such a good boy too. He loved having his picture taken. I gave him a bath the night before so that he looked his best too. I couldn’t believe though how well behaved he was and how he love to have his picture taken. However, I knew that he was ‘fat’ but I didn’t realize how fat he really looked until I saw the pictures. Gosh… that dog has to lose some weight! After all, we basically weigh the same weight and he is a dog that is smaller than me.
Not only did we get excellent pictures of the family that I love, but my parents got the pictures that they wanted too. My mom wanted a picture of a duck that we saw when we went to take the pictures at the park and David was nice enough to take the picture for her and send it to us. My dad also wanted his own picture preference of his touching my mom’s boob (which I am not going to show). Why he wanted that, I have no idea! But you know my dad… he is such a kidder! When I got back the pictures, both of them were looking for those pictures that they requested.
Since I have all these amazing pictures to cherish forever and ever, I decided to put them together and make a ‘collage’ for my parents. It is also my parents’ anniversary coming up on the 19th and therefore, I was planning on giving them this wall frame of all the pictures for it. I also got 2 frames to specifically put 2 of the pictures especially on their desks… one of me and my mom, and one of my me and my dad. They are special “mom” and “dad” frames. I hope they like it and appreciate it as much as I do.
For me, I got this awesome spinning frame. I have this picture of my dog and me that is in back and white and then another in color. Since the spinning frame is double sided, I thought that I would put the color on one side and the black and white on the other side. This way when it spins, it will look really cool. You know?
I got all the frames now at home, all I am now waiting for is the pictures to come. Hopefully they will be here soon! I will show you the pictures below.
Well… other than that… nothing else is going on. I am going to go and rest because I am not feeling well. I also have a big day coming up. I am planning on watching a movie after I come back from the big procedure. My friend came over and we started to watch FROZEN GROUND. So we are going to finish watching that and perhaps watch THE INTERN. I really wanna see that movie.
I am really excited though because I finally got notice that my phone is being shipped. I needed an upgrade on my iPhone and I have been waiting so long for the new iPhone to come out. I really wanted the gold iPhone and I waited up all night to pre-order it. I was literally the first one online to order it and would have been the first to get it when it was released. However, when I was ordering it online, I realized that I didn’t have the gift certificate by me that I had so that I could pay for the phone (I had the upgrade and then an added gift certificate to pay for the difference… so essentially the phone came out to costing me nothing!! What could be better than that?) . So of course I had to go and get it. I was literally gone for like 5 minutes. Within that time, the line to get the gold phone went to a week’s wait. I was so upset because I was really supposed to be the FIRST one to get it when it was released and now I was going to have to wait. But… I just received notice today that it has been shipped, so it should be arriving soon. I really hope it arrives Saturday, but I have a feeling it won’t be here until Monday or Tuesday. I can’t wait to receive it. I really hope that it was worth waiting for because I could have gotten a different phone color, but I wanted the GOLD one. People thought I was crazy because I could have gotten another phone at an earlier date, but I wanted the GOLD one. They were like “you are going to put a case on it anyway, so why does it matter?” I know that they are probably right because you won’t really see the gold since the case will be on it, but at least I will know it is the gold one. At least also you will see the center circle bottom outlined in gold though. There has to be something with this color because it is the hottest color phone out there right now and they are basically lines and lines waiting for them. People can’t get their hands on them and the line to get them (even on the internet) is so long; you can get the other colors so much more easily. So I will let you know if it was worth the wait. I can’t wait to use the camera and the fingerprint scanner. I also can’t wait to hopefully have a better battery because since I updated my old phone to IOS 7, which is the newest software from APPLE, it is really draining my battery. I had to get an extended battery pack just so that I can have my phone last me the entire day.
In the meantime, I am still trying to get my dad to learn the iPhone. He is coming along… slowly but surely. He is like addicted to this phone though. He spends all his free time playing around with it and checking it out. It wouldn’t be such a big deal if it wasn’t for every two minutes hearing “Fallon… we got a problem!” For someone who never wanted anything but a ‘flip phone’… he surely is loving his iPhone. I think I might have to enroll him in “iPhone anonymous” soon because he won’t put the thing down. He has to touch and go into everything even if he went into the app 2 minutes before. He is always afraid he is missing out on an email or mail or message or contact or something else. He is such a riot.
Well… I will let you know all that happens with everything. Hope everything is well and good in your area! I just realized that Halloween and the rest of the holidays are basically around the corner. Gosh… this year is flying by so fast!