I got URGENT news. Looks like I need to head to Florida on Monday!! So… since so many things have been happening, I figured that I would write and fill you in on everything. I also figured that maybe it will sought some stuff out for me because I am right now in a tornado of information. I literally feel like I am in a whirlwind because things are not good at all to be honest with you, and yet, so many things are happening. I am scared in so many aspects that I don’t even know what it is like anymore not to be scared!
As I have written in the past, I really needed to get to John Hopkins Medical Center. I was going to HOPKINS mainly for the part of my illness that dealt with my Gastroparesis, as well as my RSD too. However, since I couldn’t manage to get there until January 6th because of the holidays and such, I am now going to see my leading specialist of my underlying neurological disease (RSD) in Florida in the meantime. I hate the holiday time because there is absolutely no one around and it isn’t just ONE holiday either. It is one holiday followed immediately the following week afterwards with the other holiday.
But, the best doctor for my neurological disease happens to be also the leading researcher in my disease as well, and he is found in Florida. He is also the doctor who was sending me hopefully out-of-the-country for the very intensive ketamine coma that I really need to put the disease in remission. Unfortunately though, he doesn’t take any insurance whatsoever and he is quite expensive. So I hate when I have to see him because he charges so much and he isn’t exactly around the corner, so I have to worry about traveling expenses too because I have to go all the way to Florida. Yet, I have to see him because he is the leading guy in the neurological disease. He says that “even though he is doing the work pro bono, he still has to pay his staff and for the building and such, and that is why he charges so much money.” But there is charging… and then there is charging and believe me… he charges a lot. Just seeing him in his office costs me nearly a grand… and that is not including treatments or anything. So you can imagine how much it would cost me if he did anything to me.
Anyway… things have gotten so bad lately that I have really no choice but to see this doctor as soon as possible. My health is really deteriorating and if something isn’t done fast, I am going to literally die. My lungs are filling up with fluid and I am literally drowning. My autonomic dysfunction is absolutely out of control and at its worse as the littlest thing will set it off and it will affect my heart, lungs, and everything else. My whole entire body is going haywire and I am in so much pain. I really honestly don’t know how much more I can honestly take. That being said… when I called the doctor in Florida, he even didn’t like what was going on. He said that I am in a “life crisis” and need to be hospitalized immediately because I am going to die. He said that if something isn’t done fast, I am going to die. He really wanted me to go to the hospital as soon as possible, but unfortunately, there is no place to go. He said that if I went to the hospital to have the hospital call him and he would tell them what to do, but the problem is that they don’t have the facilities and means to do what he says. So… going to the hospital is kind of a waste of time. I was also there about a week ago because things have gotten so bad and they discharged me because they couldn’t do anything to help me. They actually acknowledged how poorly I was doing and how I was going to ‘die’ and such, and yet… they still discharged me because they said that they couldn’t do anything further for me. They said that I needed to get to a place like HOPKINS or Florida that can care for me. So I am out-of-luck even if I go to a hospital around here and the doctor even states how I need EMERGENCY help now.
So… right now the doctor has made emergency plans to meet me on this coming Tuesday in Florida, which means that I have to leave on Monday. I really don’t know how I am going to afford this because not only do I not have any money for traveling and such, but also like I said before, the doctor takes no insurance and he alone will cost me close to $1000 to see him just for the day (and that is if he doesn’t do anything). He said that I have to see him urgently because something needs to be done and he can’t really advise me over the phone because it is too dangerous. So I have no real choice but to head down there to Florida.
I am really nervous because I am scared I am not going to make it. I am scared because my body is suffering so much. I don’t honestly know how much my body can take. I really don’t even know if my body will make the trip there because traveling (especially on a plane) takes so much out of me. It really takes me days to make ‘comeback’ when I go away because it takes such a toll on me. I am afraid that I am too weak to go. I keep thinking about the kid that died on the plane last week from an underlying condition. I really hope that doesn’t happen to me.
I am also nervous because I am scared of the money issue. I really don’t know what is going to happen because we don’t have the funds at all. My parents business isn’t doing well and there really aren’t any funds to be had. We haven’t really been able to have a salary check in awhile and even paying the bills have really been a hardship…even the mortgage. We even had trouble putting food on the table because of the lack of funds. In fact, I didn’t want to talk about it because I was hoping to not have to worry about it ever again or anything because I was hoping it was going to get better, but we even had to cut Thanksgiving because of lack of funds. Can you imagine?
Never would I think that a holiday like that would have to be cut because of no money. I feel so bad for what I am doing to my family. I really don’t know what to do. I really am scared because not only can we not afford this, but it also means more days that my dad won’t be working because he will be with me and therefore, how is the business going to make its money and how are we going to make the income necessary to pay our bills? Everything just continues to worsen.
Instead of things turning around this holiday season and looking ‘up’, things only continue to worsen and look down. It is like the GRINCH is here and is stealing all my happiness that could exist this holiday season because everything revolves around money and that is something that we definitely don’t have any of. We couldn’t even celebrate giving each other gifts this year. I mean… that really is nothing, but still… I would have loved to give my parents and people I love something during this holiday season. You know? Also… you know things are really bad when you can’t afford a holiday meal. I didn’t want to complain especially when everyone was complaining how “nice” their holiday was, but I only wish my holiday was able to be just as nice. I was hoping to be able to put it under the pillow and not think about it because I was hoping things would turn around, but unfortunately… things only continue to worsen.
I am so very sick and I am so scared. Scared of the money, scared of dying, scared of everything. I really am suffering. I usually ask my parents “what should I do?” because I don’t know what to do because I know deep down that we can’t afford things even though I know I desperately need them, but this time I said that “We need to definitely get to Florida immediately and get out-of-the-country ASAP or I am going to die.” I didn’t give them any options. I told them that if this isn’t done and done soon… I am going to die. I never gave them an ultimatum like that. For me to actually do that… It means I am really suffering. I can barely get off the couch. I constantly feel like I am going to collapse. My dad says I look the worse I ever have looked. My heart pounds out of my chest so hard and it literally feels like it is going to stop beating any minute. I am gurgling at every breath that I take and I am so entirely thirsty. Yet, every time I drink because I can’t quench my thirst, I fill more up with fluid and I keep drowning in my fluids. Dad has to keep breaking up the fluids in my lungs because I am literally choking on them. If he isn’t around to do it, I can only imagine what would happen. I literally start gagging and choking just by breathing because of how much fluid I have in my lungs. It is so unfair. Everything is just shutting own on me. Not only are my lungs filling up on me because of my heart, but also liquids are spilling over and I am aspirating because my GI system is totally dead.
In addition, the nausea is also so intense. It isn’t even where I am nauseous from my stomach either anymore. I am nauseous from my throat. I can’t manage to eat anything. Just the thought of food turns me off already. The doctors want me to stop eating and drinking permanently because it is messing me up more, but of course that depends on getting the tubes because you can’t just exist without not eating and drinking. OF course getting the tubes though remains on hold because it costs money (money we don’t have), needs to be done at HOPKINS, STANFORD, or MAYO, and they said that it won’t really work until the autonomic dysfunction is really under better control because my body keeps rejecting it. So… I just continue to wait and suffer. I am trying to get better so badly and need so much treatment, but unfortunately like I said before… it all comes down to the same thing… money! I so wonder what this world would be like if it never came into existence.
I also can’t even go to the bathroom. My abdomen looks like there are aliens coming out of it because the left side is so much more distended than the right. Did you ever see the movie SPACEBALLS? Well… my stomach reminds me of the movie when the alien comes out of the stomach after the man eats that meal in the restaurant. My stomach looks so weirdly distended and I feel so pregnant. Sometimes I actually wonder when I am actually going to give birth. I am just so incredibly uncomfortable. It never ends. I can’t go to the bathroom at all and I can’t even remember the last time I went. At the very most, I will have some mucous come out of me… and not to sound disgusting or anything, but it will smell like rotten eggs. The doctor says that the reason that it smells so bad like that is because I am literally ‘fermenting’ and ‘rotting’ inside. They said that it isn’t a good sign because I am literally building up all these toxins and such from food and especially from my medications because I cannot dispose them out of my body. So they are causing extra problems in my body not to imagine the extra pain and agony that they are causing me.
The doctors say that I really need the transplant badly. The only real cure to that problem is the transplant because my GI system is basically shot. The nerves are done and my whole entire GI system is basically ‘dead!’ Yet, I am too ill for the transplant that I need, as I need that radical and risky multi visceral transplant that only like 6 hospitals in the United States perform. I need a new stomach, small and large intestine, pancreas, and liver. It is such a dangerous transplant and in fact the worst one you can get. They said though that I have deteriorated too much though that I would never survive the transplant. Therefore, they want to make me stronger through the tubes, but when the window of opportunity arises and I am strong enough… they need to take it. Yet, it all comes down the same thing… I need money because until I get money… I can’t get the tubes or anything because I need to go out-of-state to get them because they don’t have the facilities here to care for my disease and such. Even though the tubes are considered a procedure that most hospitals can do, it is the problem that they can’t deal with my illness and such because the tubes will definitely exacerbate it. I will definitely need special attention and I will definitely need ketamine and such. Not many places are familiar or capable of dealing with my issues. You know? So… I really need to have the expenses so I can travel to places that can deal with my condition and able to help me overall.
I hate to sound like a crier and a broken record to be honest with you. It hurts me to keep crying about money because I never had to do that in the past. I hate ‘begging’ for money because I was never like that. I was always the first one to help others. In fact, every Christmas (among other times), I would definitely play SANTA to the homeless and give them stuff because I knew that they were less fortunate than I was. I think that is why some of this bothers me so much. I have done so much for others and now that I need something in return, I am having such a hard time getting it back. You know?
Sometimes I wonder why I can’t be as fortunate as the other people I see on TV because I see all these other people getting the media attention that they need and the help that they need as well, especially during Christmas time. But I guess it is as the saying goes… it isn’t WHAT you know, it’s WHO you know and in my state… I don’t KNOW anyone!!
In the meantime… I have now to worry about all this upcoming stuff. I have a ketamine coma/infusion planned for tomorrow. At least I will be out of my suffering for the day when I undergo that. I also have to get an injection of a certain medication because my surgeon wants to start me on a new painkiller for the osteonecrosis and such called TORREDOL, but the problem is that the medication cannot be started unless it is injected first. So, since I am going for the ketamine, they will inject this as well. Even though I am on so many other medications and they are probably a lot stronger like Ketamine, Dilaudid, Methadone, Morphine, etc., they are hoping that the Torredol will work because it works in a different area of the brain. So…hopefully I will have some relief because I really need it. I can’t take it anymore. I need some relief because I am literally climbing the walls. I am in so much pain that all I want to do is cry and punch things and rant and rave, yet… I am so weak and such that I don’t even have the energy to even cry and whimper. So… I just harbor inside all that pain.
It takes to much energy to cry or anything.
So… it looks like I am heading to Florida on Monday. Like I have said in the beginning, I have to go see the leading specialist in Florida. I am hoping that it will be nice and warm there because I can’t take the cold. That will be one nice thing… to get out of New York and escape the cold. I am only afraid that we are going to get stuck at the airport or something because of delays. After all, the country is going bizerk with all these weather problems. I never saw anything like this with the way the weather has been.
I am kind of glad though that we are going to see the doctor in Florida before we go to HOPKINS too because at least we will know exactly how to proceed when we go to HOPKINS. I mean… my disease is very complicated and he might want us to go about the situation a certain way in order not to spread the disease even more because after all, my disease keeps spreading like a wildflower. In addition, he is going to want to give me about 4 days worth of ketamine. I really desperately need this as well, so I am glad that I am going to Florida now to have it set up because it takes some time to arrange and therefore, I will now be able to receive it January 20th or so. The longer we wait to go to Florida… of course the longer it will be until I am able to receive that ketamine. The reason I have to wait until January 20th already is because it takes time for everything to be set up and with the holidays and everything (like I said before… those holidays interrupt everything).
But there is a HUGE problem with all this as well. As much as I need and want this 4 days worth of ketamine, I definitely will need help affording it because I will not be able to afford it only own. Ideally, I need to go out-of-the-country to receive the amount of ketamine that I need because it isn’t FDA approved. However, since I cannot get there right now, I have no other choice but to undergo this 4 days worth of ketamine, which is of a lesser dose. Of course this 4 days dose is not covered by insurance either and therefore, it will cost me an exuberant amount of money as well. I think the last time I checked, it would cost about $5,000. I am speaking further with the doctor in the morning, so I will go over everything further. After all, as the secretary said, “He has the magic to make things happen!”
So… these are the upcoming plans. I just wanted to update you on all that is occurring. So as of now… it looks like it is going to be a busy next couple of weeks. I am having the ketamine coma/infusion tomorrow and then will hopefully be leaving on Monday for Florida. I will hopefully be home for Christmas and New Years and then immediately right after New Years I will be headed to John Hopkins, which will then be followed by going back to Florida to have the 4 days worth of ketamine. Of course this plan is contingent also on finances, so hopefully everything will work out.
I am only hoping that things will work out and such especially since it is the holiday season. I am not asking for anything really ‘materialistic,’ but I am just asking to just to get ‘well!’ I not only want to get well for myself because I want my life back… a life I never really got to live out the hopes, dreams, and aspirations that I had for myself, but I also want my family to have their lives back. It isn’t fair for what I am doing to them. I am not the only one suffering from this illness. Even though I may have the physical illness, they are suffering right alongside me. I can only imagine the day when I am free from this illness and my family and I are able to have a ‘good’ time together again and able to go on a vacation together. We haven’t been on a vacation or did anything fun in the longest time (almost 10 years). All we really do is survive within the 4 walls. We don’t even get the pleasure of enjoying a family dinner in a restaurant because I cannot eat out! They have really suffered because of me and I only wish I could give them back their lives.
I am trying to keep staying positive even though it is getting harder and harder. I am really hoping that these trips to Florida and Hopkins will be worthwhile and be full of great results. I know that they will be filled with radical and scary treatments, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself. Since all reasonable treatments have failed to help me, I am hoping that you might have something to help regain my life. My goal is to one day become a doctor, and I will be a great doctor because when a patient presents in my office says, “Doctor, I am in pain and words cannot express how bad it is” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”
In the meantime, I am trying to keep myself as ‘normal’ as possible and keep my mind off my illness even though I am isolated to my house. If anyone has any good movies to watch or books to read… please let me know. Also… I will take any good options for any good games for the iPad as well.
Well… I really hope you have an awesome holiday season. Again, I want to wish you the happiest of holidays and a very happy New Year. Warmest wishes and hope you have a healthy and successful 2014. Please continue to keep me in your prayers.