Just figured that I would take the opportunity to update on what has been going on since there has been lots going on and haven’t done so in awhile. Plus… I gain an extra hour of torture tonight, so I thought it would help pass the time a little faster. I hate the nights because even though I suffer all the time with pain and such, the nights are always the worst. The pain always seems to escalate at night and there is nothing that I can really do. I max out on all my meds and even max out on the amount of Tylenol that I can take, but nothing seems to give me any bit of relief. I can’t sleep at all, as I can’t even get comfortable. It is so very cold too, and due to how hypersensitive I am, I can’t even tolerate a blanket on me. I am just suffering so very much and it isn’t just a regular “pain” that I have. This is like the worst imaginable pain that you can possibly imagine. The pain is so bad that it goes right down to the bone. My body hurts so bad that not only does my entire body and all my limbs hurt, but it hurts from the surface (that even a light touch will send me screaming) to deep bone pain. I just don’t know how much more I can take.
I also figured that I would write because I wanted to let you know all that has happened with the storm and how I am making out with it, despite all that is going to be happening in the near future. The storm has really made it even worse for me multiple ways, which I will soon tell you. To begin with though, the stupid storm that wreaked havoc in my life continues to plaque me as it left me with a very bad infection/virus/cold. I have absolutely no immune system and I cannot bear to get sick because a simple cold to a normal person is like getting the “flu” to me. Plus… whenever I get sick, I can’t take regular or typical medications or antibiotics because of all the medications that I am already on. I am on so many medications that everything seems to interact with everything else. I take over 50 pills a day, so there is no wonder that it will interact with everything else. So, when I get sick, the doctors literally have to pick their brain to find something that I can take because not only do they have to worry about it interacting with my other meds, but they have to worry about me tolerating it as well. I can’t tolerate many medications too because I can’t swallow pills, I have malabsorption, and I am also highly allergic to many meds including penicillin, sulfur, etc. So, my options are really limited.
A simple cold can literally kill me and therefore, I really have to be careful not to get sick. Due to my illness, everything is “magnified” for me. Like I said before… a simple cold is like the flu to me. So I am really suffering because not only am I suffering now from my life-threatening illnesses that could really kill me, but I am also suffering from what Sandy left me… a cold/virus on top of it all. Even though I really only lost power for one day, being in the cold and not being able to fight anything because I have no immune system really wreaked havoc on me because I caught a severe cold that has made it even more difficult to breathe, function, etc.
I am really suffering because besides suffering from my illnesses with the severe paralysis of my gastroparesis, the severe autonomic dysfunction, the severe pain of the RSD, the brain tumor, the heart problems and breathing problems… I am now suffering even more than ever with further breathing problems, chills, etc. I think I have a sinus infection on top of everything else as I keep having discharge in my nose and when I breathe, the doctor can hear mucous in my lungs. This is obviously not a good thing because not only does it make it even more difficult to breathe, which I am having enough trouble doing so already, but it can easily develop into life-threatening pneumonia and such. My lungs are literally filling up with fluid on top of everything else. So, besides my bloods drastically falling and suffering from my usual problems, I now have to deal with all of this.
I was supposed to be leaving for Nebraska this upcoming week, but due to Hurricane Sandy and such, we had to postpone the trip. We are now planning on leaving November 18th. I just hope that I can hang in there til then (even though it is only 2 weeks away) because every day seems like a “touch and go.” Like the doctors have told us, “we can’t count on that I will be here from day to day and we have to take each day as it comes.” I am constantly being reminded by them how very sick that I am and how I can easily “die” any day. But, I am trying to hold on as long as possible. Knowing that the trip is delayed 2 weeks, I am hoping to be able to raise some more money for the trip because we desperately are in need of it. My diseases have really been a real financial burden for my family and from being sick all these years, the bills have become too great that we can no longer really afford treatment for me. We have made drastic cuts, but they are not nearly enough to afford the treatment that I need. Therefore, I really need other people to help me, as my life depends on it. I am really hoping to receive donations and support from other people, but no matter how much I try to raise money (whether it is through this website, writing to the media, posting flyers, etc.), it is not being effective. I don’t know what I am going to do because it is getting literally impossible to receive treatment.
Even the little money that we can scrape together so that we can go to Nebraska and to California is getting harder and harder. It is getting to the point where even those trips are going to have to stop because the “well has officially run dry.” I am only hoping that something might turn around and someone out there might be able to help me… whether it is through a large donation or a fundraiser, or something else. I am extremely appreciative of all the donations that I have received already and to all the people who have helped, but it is not nearly enough. I desperately need help, as my life depends on it. If I don’t receive anymore help, I only fear that I won’t be able to receive the treatment that is necessary to try to save my life. I need treatments, have to see doctors, medications, have to go to Nebraska and California for treatments and to see doctors, deductibles, copayments, money for transplants, money for comas, etc. But… without money… those are going to be impossible.
So… I am crossing my fingers that something might turnaround. In the meantime, I just gotta hang in there until November 18th. My life is starting to sound like the song “On The Road Again” because it seems like we are always traveling. It seems like every time we get home from a place, it is only time to go back or somewhere else. It is not only very difficult in the financial way, but it is difficult on me because it takes a lot on my body to travel. It is also difficult on my dad because he owns a business and with me having to travel to these places to receive treatment, he cannot work and therefore, no money is made. I am really afraid that the business is going to suffer and go “under” because of all this. If my dad should lose the business because he is always with me, and it can’t really “function” without him being there, I would never forgive myself.
I never thought that I would be going to Nebraska. Out of all the places in the United States, I never thought I would be headed to Nebraska. But, I desperately need that GI transplant, and only 8 hospitals in the United States perform it. Nebraska is supposed to be the largest center for my GI disease and have state-of-the-art doctors. They claim that whereas other doctors might only see like one case of me a year at the most, they see like 10 of me. They claim that they understand where I am coming from and understand that not one treatment works for everyone. So, we will see how “understanding” they are and if they can help me.
I really need a multi-organ visceral transplant, which includes a transplant of the stomach, small intestine, large intestine, and pancreas. Even though I really would like to have the transplant done in California, I need to se these specialists in Nebraska. I am really quite surprised though of all that they are doing for me though. I can’t believe that they are having the doctors pick us up from the hospital and taking us back. Who ever thought they would do something like that? I guess that is what happens when you are that sick.
I really want to be home for Thanksgiving and thankfully the doctors are allowing me to be. It is really important to me to be home because it is probably my last thanksgiving and I really want to spend it with my parents and family. My parents have said it is “no big deal” because they would do anything for me to get well, but it is important to me. So, the doctors are allowing me to go home thanksgiving day and return soon after back to perform whatever treatment/surgery is needed. I am so relieved because I really wanted to have thanksgiving at home.
I am the one who usually cooks the Thanksgiving meal. However, since I will first be coming home that day, I won’t of course be able to make it. Cooking a turkey will of course be out of the question because it would take too many hours. I volunteered to make a brisket for thanksgiving, but my mom said that “having brisket for thanksgiving doesn’t really do anything for her.” I can’t blame her because you really need to have “turkey” on thanksgiving. So… we are doing the next best thing. We are ordering a pre-cooked turkey with all the trimmings and this way it will come all cooked and prepared, and at least we will still be able to have our traditional and real Thanksgiving meal. It also will save all the cleaning up afterwards. It really isn’t that expensive either when you think about it because by the time you factor in the cost of the turkey, the ingredients to make the turkey, all the trimmings, etc. it comes out to the same price. Plus, it makes it easier on you because you don’t have to worry about cooking and cleaning. But still… I enjoyed making Thanksgiving meals and cooking the turkey and side dishes, so it still won’t be 100% the same. I like seeing how good all my stuff tasted and seeing if everyone says if I “outdid” myself. But… at least I will be home, so I gotta just deal.
So I gotta really gain my strength up because I got a big trip ahead of me. But of course it is going to be harder than ever because I have so many obstacles ahead of me. It is a lot harder now too because we still are trying to recover from the storm. What a disaster that storm was! It really wreaked havoc on us. It looks like Armageddon here now. But, I must say that personally… we really lucked out. It could have been a lot worse.
I really must say that my family really did luck out with the storm because compared to other people, we really did do “good.” We only lost power for one day, but that one-day was enough to really impact me and make a huge difference. I have been really getting sick lately. I can’t eat anything that has carbohydrates or swallow anything. I am basically living on egg whites and pedialyte ices. So… for us not to have power, it really would be a hardship because it would really “kill” me because I would have nothing to eat. We don’t have a generator even though it would be one of the “smartest” things to have because we can’t afford one and the stuff that I could eat, which is only egg whites and pedialyte ices, all require electricity. You need electricity to cook the egg whites and electricity to keep the ices frozen. I am really sick as it is and for me not to eat, it could really easily “kill” me.
When you are as sick as I am, you can’t afford not to have power. No power means so much to me. Having no power means no electricity to have heat, which means that I will easily freeze. I can’t tolerate temperatures other than between 70-74 because of my extreme hypersensitivity. I have severe autonomic dysfunction and therefore, I can’t regulate my temperature in my body. I can’t make body heat and I can’t even “sweat” when I am too hot. So… it is so important to have electricity so that the heat and a/c can regulate the temperature for me. Any temperature deviating from the 70-74 degrees really impacts me because it causes me even more pain. I also don’t really have meat on my bones since I barely weigh 70 pounds and therefore, I don’t even have insulation to protect me.
It is important to have the heat on especially at this time of year because it is so cold outside. I am extremely hypersensitive and like I said before, I can’t tolerate temperatures lower than 70 degrees. When it is 68 degrees… that is my ultimate limit. It isn’t even where I can try to keep warm by bundling up in clothes or using blankets because I can’t tolerate the touch. I am in extreme pain and anything that touches my skin literally sends me through the roof. So, putting layers of clothes on or using blankets to warm myself up was basically out of the question. I really needed the heat desperately because not only was I freezing, but like I said before… I also have no immune system and I can’t afford to get sick. We all know that when it is cold, people get sick!!
It is also imperative for me to have electricity because that is the only way I can eat. I can’t afford not to eat because I barely weigh 70 pounds. At this weight, even losing one pound is extremely crucial. Once I lose a pound, it is basically a lost cause in trying to regain it. It is basically impossible to do so. So… not only will I lose weight by not having the power on because I can’t eat anything since I can’t make my egg whites or have my ices, but I also will deteriorate from being so “weak” since I have no intake. I also would have the problem of not being able to drink because due to my extreme gastroparesis and such, I can only drink things if they are “slushies.” If there is no power, how am I supposed to make them?
In addition, my bloods are really bad and I am having the worst mucous coming out of me. I was so scared that I was going to go into cardiac arrest or have an arrhythmia because my bloods would continue to fall especially with no intake of food. I have medicated ice pops to take that are supposed to try to bring up my bloods and with no electricity… there was no way I could have them. I really thought that this storm would be a “death sentence” if we lost power.
So, I was really scared that we were going to lose power because of the storm. I really felt that would be the biggest problem. The news people had just said that the worst of the storm would basically be over about 8 PM, but at about 5ish, I was starting to feel nervous and couldn’t’ sit still. I figured that I would make dinner earlier just incase the power went out. Do you know that I just finished cooking the family dinner and was just about opening the oven when the power happened to go out? What timing was that? Who said I didn’t have perfect timing? Unfortunately though, I didn’t have dinner though because I usually make my egg whites after I take their food out of the oven since it literally only takes 2 minutes to make mine. I literally had just put my egg whites into the microwave when the power went out. So, while the rest of my family ate by candlelight, I had nothing to eat and watched them. I had no other choice.
I was really hungry because I had nothing to eat. I was very cold too and wanted at least a cup of hot chocolate or something. We did have some battery packs that you could plug some stuff into and you could also use them as lights as well. So, my father did try to help me out because he felt bad that I had nothing to eat or drink. So my dad tried to plug the hot water dispenser into the battery pack, but it took too many volts. Since it didn’t work, my dad then tried my brother’s keurig machine, but that also took too many volts. I was surely out of luck. I was going to bed hungry and thirsty that night.
It was a long night because I was scared. Even though I was told by LIPA that due to my condition that I would have “priority” in being put back into service, I was still freaking out because sometimes when I called to find out the status, they would tell me to prepare for 7-10 days without power. I would never survive those amount of days without power. To think… not eating for those amount of days or no heat? I would surely die. I kept thinking about all the down trees and power lines that were occurring. I was clearly freaking out. I was also freaking out because all the transformers were sparking and I was afraid that it was going to cause a fire. All my brother kept saying was that he kept seeing sparks from all the different transformers located throughout my block.
I had nothing to do the entire night because I usually watch television and go on the computer at night since I don’t sleep because it’s too painful. However, since there was no electricity, that was obviously not going to happen. I ended up playing on my phone the entire night and trying to keep myself calm and occupied by talking to people. I went from having full access on my phone such as by using it to make voice calls, texting, and Internet service to only having the ability to text and have Internet service to finally just having texting service. I was clearly out of luck by morning, as the only thing I could do was text.
Wanna hear something? To prepare for the storm I did charge up all my stuff in the like my laptop, phone, iPad, etc. so I was all prepared in case the power did go out. I even charged up my extended battery that I bought for the plane when we go to California, so that it can recharge everything to a point when they go dead. Who would think that the battery I got for California would have been such a good idea? It really came in so much handy. I can’t believe I was procrastinating over it because I didn’t want to spend so much money. Yet, it has saved my butt so many times especially when I have been delayed when traveling and I need to use my phone or iPad or something and they are all through with their charge.
By morning the storm was over and we still didn’t have electricity of course. However, my dad’s office did have electricity, which was not so far away. He had to go there to recharge all the batteries and equipment so that we had them for that night because we clearly drained them that night from using them. Even though LIPA had said that we would have “priority” in being put back up, we couldn’t be certain when that would be. So, we had to take precaution and charge everything just in case we had no power for the following night. I was so afraid of not getting power back because even though we have priority status to resume power because of my health issues, they can only move so fast. When lots of people are suffering with no power and the weather was the way it is… who knew what would happen? Nothing goes fast enough when u really need it.
My dad wanted to take me with him because there was no power at home and at least there was power in the office. However, I was really not feeling well and not eating or drinking the night before was definitely not helping the situation. I was feeling extremely weak and the temperature in the house was already dropping. I was afraid that if I left the house and got even “warmer,” it would be certainly worse for me when I returned because I would be even “colder.” But, my parents wouldn’t stand for it and therefore, they scooped me up and brought me to the office. We spent the entire day there.
During that afternoon, my brother had gone home for a bit. When he returned back to the office, he told us how cold it had gotten already in the house, as it was already down to 60 degrees. There was no way possible that I would be able to tolerate that temperature and therefore, my dad said that we would sleep in the office that night even though my mom and brother would go home. I have the best dad because he was willing to do this for me. However, just as we were about to go home to get my meds and such so that we could come back to sleep, we called my house to see if the answering machine picked up. It did and therefore, it meant that power was back. We couldn’t get home fast enough because at least I could eat. I was starving at this point.
I can basically only eat in my house because I am so embarrassed to eat on the outside. Even though the only thing I can tolerate to eat as of now is egg whites and pedialyte ices, I still vomit it up afterwards. So, I really am self-conscious about it and therefore, I refuse to eat outside my house in fear of being embarrassed.
We really did luck out with the storm because we were the ONLY block to go back up. With the storm, like 90% of Long Island was out of power. I told my parents, “Do you realize how lucky we are because we have power and were like one of the first to be put back up?” It really was certainly amazing. In addition, whereas people had damage to their houses, we had not one bit of damage. Not even a tree fell. We have this one huge oak tree in our backyard that is easily over 200 years old. Everyone on my block was watching that tree because if that tree came down, not only would it easily crush and take out my entire house, but it would probably knock out a couple of houses on the block as well because it is that big. However, it is so old and such that the roots must go so far down into the water table that it wasn’t even budging during the storm. Thank goodness for that. In addition, as everything flooded, we had no floods by my house. The street did flood and the air smelled like sulfur from the sewerage, but the flooding stopped two houses down from my house. What luck was that? It was like someone was looking over us. You know? Someone was really looking out for us. Yet, I did ask my dad that with everything that just happened if we could get a generator because we saw what happened this time with no electricity. It just so happened that we got our power back right away and weren’t too inconvenienced in that aspect, but honestly… it could have been A LOT worse. But, of course my dad said that we can’t afford it and maybe next year. I understand where he is coming from, but I would hate to have to go through something like this again.
It honestly could have been a lot worse because in my area we were flooded, boats were in the backyards of people, there were tons of fires, people had no power, homes were ruined, etc. We even had the National Guard here and we had people being rescued in rafts. Even in the floods, we had fish in them. I heard we had over 10,000 fish on one of the major streets and we aren’t that near to the ocean. I even heard one of the fish was a 16-inch bass. Of course that is “what I heard!”
One of the great consequences of this storm though is that a lot of people lost their houses and businesses. Therefore, my dad lost some major accounts, which means that he lost income that was very much needed. So… it is now more important than ever to find ways to raise money because my medical bills are astronomical and it makes it even harder to pay the bills with all the business he lost.
I was really nervous to go out the next day even though I needed to pick up some drugs. I had no cell service still except for texting and I was so afraid that if something happened to me, I would have no chance of getting in touch with anyone… not even the police. The shopping center around the corner from my house had power at this time and I could have gotten it there, but I was really scared to go because of this.
The biggest problem that we really have is gas. The lines here for gas are out of control. You never know when the gas stations are going to have gas and then when they do have gas, the lines for gas are like majorly long. People literally have to wait on line for hours. However, I am in major trouble because we desperately need gas. We desperately need gas for multiple reasons. Not only does my dad need gas for to work, but we need gas in case have to go to the hospital (not doing well at all) and gas to go to Manhattan because I have a important appt on Monday that can’t be missed at all as my life literally depends on it.
It is impossible for me to go and get gas because I can’t sit in a car for hours to due to the nature of my illness. It is also a hardship for my dad to do this as well because not only does he not have time because he works like a dog 7 days a week and basically 24 hours a day (he barely has time to rest… and that is not a joke), but he has to take care of me as well. Yet, dad did try to get gas, which really was a hardship for us because it meant leaving me alone when I was really feeling ill. But to make matters worse, Dad sat in line for gas for hours and just when he got so close, they ran out. Can you imagine? So close and yet so far. We really needed the gas too.
Luckily though, my dad’s friend son is pumping gas for one of the stations and he gave my dad some gas. He snuck my dad in the “back” way while everyone was lining up for blocks. So, at least he did manage to get some gas. However, it will only go so far because he also needs gas to work. We desperately need another car to get gas or get more gas for his car so we can make it to the city on Monday to the doc. We really can’t jeopardize the gas because if we use the gas for the city, what will dad use for work? After all, the city isn’t exactly around the corner and with all the traffic going into the city as well, it is going to burn up even more gas. Dad needs his car for work because he basically uses his car for the entire day and depends on it. If we use all the gas for going to Manhattan… How’s he going to work because no gas to do his work… U know?? So I don’t know what to do.
People are really going crazy though and getting hostile when it comes to gas. Today when we had to get something from store, but we couldn’t park the car or go into it because the line for the gas station wrapped around that block and blocked the store’s entrance and the street parking. So… we pulled in front of the store and next to the gas line so that someone who works at the store could bring what we needed out to us since we couldn’t park the car. I never saw people move so quickly. They literally came running out of their cars to complain that we were cutting the gas line. When the guy brought us out the stuff that we needed, one of the people that was waiting for gas in the car next to us told the guy that he “better hurry up and get me out of there because people are getting hostile and going to lynch me!” People are really getting desperate and hostile. I guess I can’t blame them, but enough is enough! We need gas desperately too, but they don’t see me being so hostile!
Halloween also came and went since the last that I wrote. I cut open the pumpkins of course and made delicious pumpkin seeds. Nothing ever tastes the same as pumpkin seeds fresh from the pumpkin. You can never get the same taste as them in the ones you buy in the store even though they are still “pumpkin” seeds. I had two pumpkins to cut, but one pumpkin was impossible to cut. So, I ended up cutting one and gave one to my dad. Of course it so happened that the one that I wanted to carve was the harder one to carve, so my dad got it. I just liked the size of it and the way the stem was. It reminded me of a witch. My dad tried to finish it so quickly and made a jack o’lantern with only 2 eyes and half a mouth. I made him make a nose and finish the mouth. I mean come on… if you are going to carve a pumpkin… you gotta do it right!!
So… that appears all that is going on. I guess that kinda sums up everything that is happening. I just hope that things turnaround with Nebraska and that something comes around with the donations and such because I can’t afford it. I also hope that I start to get better from this illness/cold because I can’t fight anything and I literally can die from a simple “cold.” It really does take a lot out of me. I really need to get better soon also because I leave very shortly for Nebraska.
I know I am not doing too well because Missy of course won’t leave my side. She is like my babysitter. She stays with me everywhere. I am getting so weak. It is at the point that I can’t even go to the bathroom during the night because it takes too much out of me to get out of bed. The least I have to move, the better that I am. But when I do go out of bed, Missy follows me even though she knows I am coming right back to bed. It is like she has to go with me just to make sure that I am OK.
I am really not doing well and dad of course is bribing me too. He is so afraid of losing me and to be honest… I know if something should happen to me, he would never recover. He keeps telling me that if something would happen to me, he wouldn’t take his medication or take care of himself. He also tells me that I wouldn’t recognize him in heaven because he would be “fat as a house.” I know he doesn’t mean anything “bad” in what he is doing, but he acts as if I am in “complete control” of when I should die. I keep telling him that when I do go, it isn’t to hurt him or anything. I would do anything to stay with my dad, but I don’t wanna suffer anymore. I just can’t take it anymore. It is so unbearable. My dad says he doesn’t want me to suffer either, but he says that he is “selfish and he doesn’t want to lose me.” If it was up to him, he would have be “frozen” so that I can live forever. He has it planned that he would freeze me and since technology is always changing, he has it planned that he would unfreeze me when they come out with a cure. He would really be at a great loss if something would happen to me. Perhaps that is why I fight so much to live… it isn’t so much for myself… but it is for my dad!!
If you have any ideas on how to raise some more money, please let me know. I appreciate anything that you can do. In the meantime, I am the energizer battery and I just keep going and going and going!