Well… it’s officially the holiday season with the passing of Thanksgiving. I can’t believe that the holidays are here already. Before you know it, we will be ringing in the New Year and it will be 2014. But now that Thanksgiving has officially come and gone, the holiday season has officially begun. Not only has Chanukah started already, which is much earlier than usual and will not be this early again until 2070, but I truly believe that once the turkey is eaten and the holiday has passed, it is now truly the “holiday” season. That is why Christmas carols start to be played on the radio, Christmas lights start to get put up in addition to Christmas trees, and of course I change my ringers on my phone to fit the season as well. I usually always have the same ringtone this time of year as always because I have this on favorite song that has been my favorite ever since I was in diapers. I have been an avid fan of “Grandma Got Run Over by a Reindeer.” I don’t know what it is about this song, but I just love it!
Now that the holidays are here, I want to be one of the first to wish you “Happy Holidays!” I am not expecting much for the holidays because I know (and was also already told) that there are no gifts this season. We just don’t have any expenses that can be spent on gifts. Buts that’s ok. I really don’t want anything anyway. I rather my parents use the money where it is much needed.
What I really want, I can’t really pay for anyway because it is just too expensive and just not attainable without the help of others. I am not asking for anything major …but I am just asking for 3 small gifts. All I want for the holidays is a chance to “live,” which means having just 3 simple things. First, I need donations because the treatment I need to save my life is just so expensive that we cannot afford alone. Second, I need kind people to spread the word of my site so that the word gets out! Otherwise how else are people going to know about this? Finally, I need prayers. Life is like an ocean and sometimes a life preserver needs to be thrown out in order save someone overboard. Therefore, I am hoping that through the prayers and donations, I may get the very best holiday gift that can exist!
I am really doing horrible and I really hope that my holiday wish comes true because if it doesn’t, I fear that I won’t make it much longer. I am rapidly deteriorating and to be quite frank with you, I have just went to the doctor today and even the doctors are saying that even though they are taken back that I have managed to survive and linger this long, they think that my “luck” in this matter has ended. They said there is only so long that a person can last like this (i.e. without nutrition) and my time is up. My body is literally on its last breath of steam and unless it gets rejuvenated or something, they don’t think I am going to make it much longer.
I have been having a very hard couple of weeks, especially lately, and things just continue to worsen as time passes. I just went to the doctor and I didn’t even receive “good” news. Then again… when do I ever receive “good” news?
Firstly, let me tell you that I am one week out of surgery and I already have to go back into the operating room. Of course I needed more surgeries besides what I had last week such as the transplant, surgeries for my stomach, ketamine comas, etc. but it turns out not that my jaw and teeth further crumbled. As I stated in previous writings, I suffer from osteonecrosis, which is when the bones are literally dying. Anyway, when I had the operation last week, I ended up having the surgeon fix my jaw, the osteonecrosis, 11 cavities, perform a root canal, etc. It was over 6hours in length and it was not an easy surgery by any means. Anyway, the day after surgery I started feeling another hole starting to occur. I told the doctor, but no one saw anything. The thing with me is that I am so hypersensitive that I can literally feel anything and everything…even if it is microscopic. I can tell you things that exist when it is not even visible to the naked eye and I really stun all the doctors by this because the stuff I feel because I am soooo incredibly sensitive is beyond belief.
Well, as it happened to turn out, I was right. A few days ago… that little hole that I felt crumbled and now I have a huge gaping hole now that will be sending me back into the OR. I can’t believe it. Not only am I in excruciating pain because this has occurred, but it had to occur of course during a time when my doctor is on vacation. Why does things always have to happen when your doctor is on vacation? Thank goodness though that he gave me his cell number because even though he has been on vacation, he was still able to be contacted and therefore, when I told him what has happened, he told me that he want to see me first thing Monday morning (since he is returning then) and in the meantime he sent me to another doctor to perhaps see if something can be done in the interim to hold it up. My mouth is literally disintegrating before my very eyes.
So… I will know Monday the exact plan of action, but it is more than likely (basically guaranteed) it is back into thee operating room for me. To make it worse, I have just received my Chanukah present from the surgeon, as I received his bill alone from the surgery and it is astronomical. I don’t know how on earth I am going to afford it. To think… now I need more surgery too, which means I am going to have more money on top of that too. I don’t know how I am going to afford all of this.
To make matters worse, I am suffering worse than ever. Not only has this surgery really impacted my illness and made it worse because it has been considered very “traumatic” to my body and anything traumatic has the potential to worsen and exacerbate my illness. Therefore, my autonomic dysfunction has been totally out-of-control and I am suffering from severe fevers… not to mention the extreme pain to accompany it. I never get a break from any of this, as it is nonstop 24/7.
The doctors are also afraid because not only have I had an exacerbation of my illness, but the fevers are worrying them as well because fevers are not a good sign. They were always worried about the dead bone bacteria getting into my bloodstream and into my body because if I developed an infection or something, I wouldn’t be really able to fight it or anything. Plus… with any little infection is something really major in me because everything is magnified. So with me having this fever now, they are scared that the bacteria are spreading. I have also been having chest pains a lot and they are scared that it could be attributed to this bacteria as well. Instead of my throat feeling better each day afterwards after surgery because I was on a ventilator, I have only been feeling worse and worse.
So the doctors put me on an antibiotic to hopefully fight the infection, but they don’t even know if that is going to even work. I am on so many antibiotics already because of my overall condition that they are really worried that it won’t even work. After all, I take over 50 pills daily, and they include not only Methadone, Dilaudid, Ketamine, Morphine, etc. but antibiotics as well such as Azithromycin, Vancocin, Bethanechal… among others. When you are taking so many antibiotics, it doesn’t look too good that the medicine that you need to work will work to kill the infection. But, the doctors put me on Cipiro to try at least to combat the infection!
So… not only are we having that as a problem, but according to the doctors, I desperately need the multivisceral transplant as soon as possible. I am in really bad shape, and my body is shutting down. Unfortunately the only real cure for my gastric problems is the transplant, which entails having a very radical and risky operation that is actually the most dangerous operation that you can have. I need to have a transplant that entails getting a new stomach, small and large intestine, pancreas, and liver. It is extremely risky and dangerous. However, I need it in order to live.
The problem is that I am too weak and sick right now to even receive it because we waited too long. We didn’t have the funds available to receie it before and this transplant is extremely expensive. Not only is the transplant itself expensive, but only a few hospitals (like 6) in the United States actually perform the operation and as a result, I would have to relocate for a bit and that would also cost money. Since the funds were not available, I missed my window of opportunity and I got so bad that it is at the point that I need to get myself stronger before I can have this transplant because I would never be able to survive it.
So the doctor say that I really need to go to the hospital immediately because my body is failing me and I need to get strong enough to have that transplant done ASAP so that I can have a chance of living. However, everything has to be in place such as the funds so that when they get me strong enough to have the transplant, it will be able to happen because we don’t have time on our side anymore. I not only need surgeries to help me get stronger, but tubes as well. I need TPN, which is when they totally feed me on tubes because the doctors don’t want me eating or drinking anymore.
My body has literally failed me that the doctors said that I am in need of urgent care. My lungs are failing me and my respiration is in the single digits now. I have such an elevated carbon dioxide level because of this and it is really difficult to speak at times because I tire easily because of lack of oxygen. Even the doctors say that the volume of my voice has really decreased dramatically as a result of this. In addition, I am aspirating like crazy and my lungs are filling up with fluid, which is compounding the problem too. I am extremely thirsty and it doesn’t matter how much I drink because I just can’t quench my thirst. I am so malnourished and I just can’t absorb things like I should be absorbing. For example, when I went in for the operation, I literally gained 8 pounds over 6 hours because I can’t process the fluids. Any fluid that I consume literally just adds weight onto me and I can’t ‘process’ it. I have severe edema and the more I drink, the worse it gets. I constantly feel like I am drowning in my fluids and you can hear me gurgling. It is really scary.
The doctors said that they really don’t want me drinking and eating anymore. But of course you need to do that in order to survive. In order to accomplish what the doctors want, I need tubes placed in me. I need a central line, as well as TPN immediately. However, the problem rests that it isn’t such a simple procedure, especially with my illness. I need specialized care and I need ketamine along with it. I need the ketamine because it is like a magic drug in that it hopefully will stop the spread of my illness when I have this because anything that is considered ‘traumatic’ (which includes even a needlestick) could spread or exacerbate my illness, which is something I definitely can’t afford especially when it is already spreading like a wildflower. It will also calm everything down afterwards and make it more tolerable since I am so hypersensitive and in extreme pain. Even a basic IV line is excruciatingly painful to me and they can’t even run it with fluids (even saline) because I can feel the saline going through my veins and it actually burns it up. It is horrible. Plus, with all my other complications, there aren’t a lot of hospitals that are even able or even willing to be able to care for me.
Therefore, I really need to get to Mayo Clinic in Minnesota, Stanford Medical Center in California, or John Hopkins in Maryland as soon as possible to have this done. These centers are where my specialists are located and where they are able to perform this procedure. However, like I said before… it isn’t exactly located around the corner and it will of course cost a lot of money, which is something that we don’t have at the current moment.
I just went to the doctor today in fact, and we really got bad news. The doctor confirmed how bad things really have gotten and how badly that we really need to get to these hospitals as soon as possible. However, my dad knows how impossible it really is because of the lack of money and he tried everything to see if perhaps the doctors here can do it. It isn’t like we are in a hospital that isn’t ranked highly in the United States either. We were going to a top-ranked hospital. You would think that going to a hospital like Mount Sinai in New York would be able to accomplish doing this kind of procedure, but unfortunately they couldn’t. My doctor kept telling my dad that there really wasn’t anyone here in the New York area to perform the needed procedures that I needed and therefore I really needed to go to the other hospitals. However, my dad didn’t want to admit that he couldn’t help me and he kept pleading with the doctor to ‘ask’ around. It got to the point where I just told the doctor to please just ‘yes’ him to death that you will ask around even though we both knew that there was no way possible it could be done here. The doctor said he wouldn’t even try it here because if I had a flare-up or a reaction, we would be in big trouble because the needed supplies, doctors, equipment were not here. We would be at a great loss. That was why I needed to be in a hospital that had all this stuff and unfortunately it was in a place that cost a lot of money and not located locally. My dad said, “they have to try and learn at sometime… so let them do it now.” But the doctor said, “Yeah, they need to do it on someone to learn, but they don’t want to kill the person in the process.”
In addition, after speaking to the doctor today, we pretty much concluded that I have the bowel obstruction or a twist in the colon. I definitely need this taken care of as well. Thank goodness I have been able to last this long. They said that the reason I have been able to last this long was because my colon is so dilated that even though there is a blockage and it is possible twisted, it still is able to get oxygen through so it isn’t completely necrotic. Yet, it needs desperate help.
The doctors also stated that another part of the reason that I have the severe gastroparesis and I need the transplant, as well as why I have the blockage, is because I have a pseudo obstruction. It means that the small or large intestines lose their ability to contract and push food, stool, and air through the gastrointestinal tract. Usually surgery can correct this problem and remove the portion that is affected, but the problem with me is that my problem is so widespread that it affects the entire system. Therefore, that is why it is imperative that I receive the transplant and soon too!
Something has to be done and done quick to because it is so painful to have this condition. The pain associated with gastroparesis is unimaginable. I am so thirsty and hungry and yet… if I eat anything or drink anything, the pain is made even worse. I have nausea and vomiting all the time. In addition, I can’t go to the bathroom and when I do… it is only mucous and it is very foul smelling… like rotten eggs. It is like I am ‘fermenting.’ The doctors say that since nothing is moving, I am literally like rotting inside. It is extremely dangerous because not only are things remaining inside me longer than usual, but I can get really sick from it because there is so much bacteria due to the stuff “rotting” inside me. In addition, my medication isn’t being taken out of me either because of this condition, which can lead to toxicity. So… there are so many reasons why this transplant is a necessity!
So… Our hands are tied until we find the funds to come up with making the trip to these hospitals. That is why I am pleading to have you spread word of my website. I hate to sound like a ‘beggar’ or a ‘crier’, but I really don’t want to die and I am literally running out of time. There is only so much time I can linger like this and it appears that my time is up!
To make matters worse, I also need major heart surgery. With everything happening, my heart rate is also dropping to a rate that is way too low. My blood pressure is also very non-existent because it is so incredibly low. The doctor even saw today how bad my autonomic dysfunction has gotten. He said that I really need a pacemaker as soon as possible.
You would think that a pacemaker wouldn’t be such a major procedure, but in my case, you are talking about major heart surgery. I not only need the surgery, but they literally have to open up my entire chest. They cannot just place the pacemaker under the skin like they would do in a regular person. Instead, they have to literally open the chest cavity and place it inside… below the ribs and muscle because of how small I am and with all the complications that I have.
I desperately need this done because not only is my heart rate extremely low (like in the low 30s), but anything can happen especially with the autonomic dysfunction being so bad. Therefore, they are hoping that this might also serve as a ‘protective’ mechanism as well. However, we also run into the same problem as the other surgery that is needed… I need to have it done at one of those hospitals I listed above because I need ketamine during the operation (which is no big deal), but would need to be placed in a ketamine coma afterwards in order to get my body adjusted too everything and to get everything to settle down. That is where the problem lies because no hospital really has the means or capabilities to do this because they are not really known to do this.
My whole body is deteriorating. Not only am I being told that this is all happening, but also I can feel it. Like I said before… I am so hypersensitive and therefore, I feel everything and it is magnified too. So any little minor thing is something major to me. Not only is the autonomic dysfunction out of control, but I can’t breathe, I feel like I am drowning in my fluids, I feel like someone is sitting on my chest, and I feel like my heart is being stretched in all different directions. I am also in so much pain 24/7 that I can never catch a break. Is this ever going to end?
I really feel like I am against a clock. Everything is just continuing to worsen and I am barely hanging on. After speaking to the doctor today I desperately need help. If you can please do anything to help… I would really appreciate it. Like I said… there are 3 simple things that I want for the holidays… prayers, donations, and spreading of my website! It is really imperative that that I receive help because not only do I need it for this particular treatment, but I need it for my overall treatments as well because we are basically not able to afford anything. Despite all the cuts that we have made, we are having trouble affording any and all medical bills, my medications, doctors, traveling expenses, etc. Therefore, I would be extremely appreciative if there is anything that you can do. As for my family and me… our hands are tied.
I tried thinking of different ways of fundraising, but I am totally at a lost. I am way too weak and sick to basically do anything, so if there is anything that you can do, I would really appreciate it. I made a joke with my dad and said to him that we can dress him up as Santa and he can play Santa for the day. After all, I told him that all his eating for the year could be good for something. I told him that he doesn’t look the part for no reason whatsoever. But of course he didn’t take me seriously and he of course didn’t think I was funny. I thought it was a cute and funny idea because after all, he would make a cute Santa with his belly and gray hair. I thought that maybe after I showed him the picture I made of him dressed up as Santa that he would think twice and also think twice about his eating habits because I really want him watching what he eats since he really needs to lose weight. I am really worried about him because he needs to lose weight since he is so overweight. However, with all the stress and everything… well… you know how it goes. I kept making him promise me that he will lose weight, but as much as he does… it hasn’t happened. I really don’t want anything to happen to him because he means way too much to me. I don’t know what I would do or how I would even live without him! Just like he says that he “can’t live without me,” I can’t live without him!
I really have been trying to keep myself occupied and trying to keep my mind off of things because if I did nothing… I probably would drive myself up the wall with everything that is happening. I have been really weak lately and unable to move. I spend countless hours on the couch. Thank goodness I have my animals… Max and Missy take turns keeping me company and “babysitting” me. I have my Max to watch and stay with me during the day, whereas my Missy I with me during the night. If I didn’t have them… I don’t know what I would do. They are like my best friends… especially when you feel like you don’t have anyone because so many people have walked out on you when you need them most. You really learn who your true friends are when you really need them! In addition, they really cheer me up as they can do the funniest things. One day I even caught Max reading a magazine!
Max is the best dog. He was supposed to be MY dog, but he actually became my dad’s dog. He is really the only thing that relieves my dad’s stress. In fact, I think when he comes home from work, he is more excited to see Max than anyone else. No one is better than Max and Max can do absolutely no wrong. Max has my dad wrapped around his finger in the sense that he can get my dad to give him so many treats and take him out for so many walks!
So to keep myself as “normal” as possible and to keep myself as occupied as I can, I have recently been reading a terrific book called “The First Phone Call From Heaven,” which is written by Mitch Albom. It is simply a magnificent book and I really recommend it. He is the same author that wrote the well-known books known as “Tuesdays with Morris” and “The Five People You Meet In Heaven!”
I have also been playing some apps. I finally found an app that I really want to get, which is a rarity for me because I never find one that I am so inclined to getting. It is called “Mickey’s Castle of Illusion!” However, the problem is that it is $10 and I absolutely refuse to pay that much money for one! I mean… Even paying $1 is a lot for an app… let alone $10. I don’t know how on earth it could possibly cost that much money. I am really hoping that the price comes down, but who knows? Of course it isn’t a necessity and I can do without if it doesn’t. After all… even though others have said it is a “great” game and it has gotten good reviews… my luck is that it will probably stink. There is nothing worse than spending money on an app and then after you download it and play it once… you find out it really stinks. I can’t imagine how much money people waste because it “appears” to be a good app until you actually use it and unfortunately once you buy it… you are stuck with it!!!
Well… I guess that is enough for right now. I am not really feeling too well, but just wanted to write a little. Hope you had a really terrific Thanksgiving and I hope you are enjoying the holiday season. Until next time!