What is going on? Just wanted to write a really quick update and let you know what has been happening. Things aren’t going too weall and before it snowballs out of control with pages and pages of so much that you get so bored and don’t want to read everything, I figured that I would write what I know as of now. This way it would not only be easier to write because I don’t have the patience to write long updates anymore, but I am sure you don’t have the patience to sit there and read long updates either. Plus… with all that has been happening lately… who knows what is going to happen. So since all bets are off as to what can and will happen, I want to let you know the latest just in case.
I am not doing well at all. It seems even though I have been sick for a while, I am like on a BIG downfall lately. Usually I bounce back and I feel better after I have a ‘down’ period, but lately all I keep doing is ‘falling.’ I keep deteriorating and it is getting faster and faster. I keep looking for a bounce back, but it just doesn’t seem to be in the cards. Things just keep getting worse and worse.
Even though I have been suffering for many years, at least I was kind of used to that suffering. I was used to all the symptoms that I was having and even though I was worried about all that I was exhibiting and such, at least I knew what it was like, what to expect, and kind of what was happening and what it was due to. However, nowadays I am having all these new symptoms that I have never had before and it is really making me scared…. More fearful than anything. Even the symptoms that I always typically had are so much worse. I really have no idea what is going on with my body, but I do know one thing. I know that I am rapidly deteriorating and unless something is done quick, something bad is really going to happen. I really need help more than ever now and if I don’t get it, I really fear for the worst because I know something terrible is happening and it continues to get worse and worse. I really don’t know how much more I can take.
Want to hear something though? You would think that I would be able to get the care that I need in New York because it is such a huge and bustling state. It has all the top hospitals in the state such as New York Presbyterian, Mount Sinai, New York Medical Center etc. However, I have come to the conclusion that if I am going to get better, I really need to get out of New York. There really is nothing left in this state that can help me. I have been to every hospital and I have seen so many doctors that I am basically ‘out of docs.’ You know things are bad when you go to a top hospital like New York Presbyterian Hospital and the doctor even gives you back your money after he sees you because he is unable to help you. I mean… who would have thought that would ever happen especially in a top hospital like that.
But the thing is that in order to get out of New York and get the help that I need, I really need the finances to back me up, which is something I really am lacking. I am desperately needing help from others in receiving treatment because we can no longer afford the lifesaving treatment that I need in order to LIVE. I really hope that something would come about like the media picking up my story or something, but it just isn’t happening. I know… it isn’t what you know, it is who you know… but I really am running out of options and without treatment, I am only getting worse, severely deteriorating, and I am going to die and die soon. Things are getting so bad that I can’t even afford to get a simple blood test. I have tried so many ways to raise money, but they just have been unsuccessful. If anything, they work in the beginning, but they quickly stop working and the amount of support I need is a lot because the treatment I require is extremely costly. I need a very intensive ketamine coma to help treat the neurological disease/autonomic disease that will cost me over $100,000. This coma is given out of the country and as a result, it will not be covered under insurance whatsoever. In the meantime though, I still need to go for other coma treatments that need to be covered. They are not nearly as expensive and not nearly as intensive, but I still need help in receiving that treatment. I also need help in achieving the necessary surgeries I require, medication, etc. I also need to get to see my specialists in California and Florida, as there is no one here in New York to see that can help me.
It is amazing how quickly things add up. Even the medications that I take are impossible for us to afford. Although the insurance does pay for some, I take over 50 pills daily and not all medication is covered. Plus even with the insurance covering whatever they do cover (appointments, medication, etc.) I still have to worry about the copayments, which also surely quickly add up. Just in copayments alone, we spend over $30,000 per year.
I haven’t given up hope in receiving the help from others. Even though I have tried various techniques to raise funds so I can receive the necessary treatment that I need such as writing to the media, posting flyers, posting on Facebook, making a website, writing to famous people, etc. I am still trying other things to try to bring in additional funds. After all, my life is on the line and hanging in the balance. I am only 31 years old and not ready to give my life up yet. I have too much to live for and I just haven’t seen or done enough on earth before I go. So to try to raise further funds, I have made new posters to hang up and I even made business cards to give to people so that they can always have my site and donation info on hand so that they can’t forget where to give the necessary donations. This way they just don’t see or hear about the website and forget about it. You know?
I am reaching out for support because I desperately need it. Thank goodness I have a great friend who is now helping me find a way of raising funds so I am not in this ‘alone’ anymore. After all…. You know what they say…. Power in numbers!! So I am hoping that it will certainly make a difference because the more people that support me and help, perhaps not only will I be able to get the necessary treatment that I need, but perhaps I will be able to receive attention to all that I am going through so that I can alert the world to this horrific condition. After all, not many people know about this condition and to be honest… if I didn’t go through this illness, I would never know it existed. To be honest… I wouldn’t even think this disease was possible if I heard about it because it is such a horrific disease that it has so many terrible things. This disease contains so many things that it seems impossible that it all can happen to a person.
I really need help though because time is of the essence. As it is… I was supposed to be going to California this upcoming week to see the neurologist and gastroenterologist. I really needed to go on this trip, but due to financial reasons, I had to cancel the trip. It was a real shame that I had to cancel it because I am suffering so much and exhibiting all these new symptoms. These doctors are the only doctors that could tell me what is going on. I have been to many doctors and these doctors are by far the most knowledgeable. If there is anyone who could tell me what is happening and give me an explanation or give me help… it is the doctors there. However, due to financial reasons… I had to cancel. I am now scheduled to got o California the end of April/beginning of May (as long as I am alive) because I need to have surgery and be ‘tubed.’ They are trying to buy time because I am not going to make it much longer without it. They will place me into a coma and ‘tube’ me tat that time to try to ‘feed’ me and such.
In the meantime though, I am severely worsening. First, I am having lesions appear in my mouth. The doctor was unsure of what they were and wants me to see a special surgeon at Long Island Jewish who is also a pathologist. One of my specialists believes that it is because of my failed immune system. Since my body is deteriorating and failing, my immune system is doing the same. As a result, I am breaking out with all these lesions. They started in my mouth and are so incredibly painful. However, lately they have spread to go down my throat. I can barely swallow anything, as it is extremely painful now since they are down there. The doctor has tried to get me in sooner with the surgeon/pathologist at LIJ, but the doctor does not have the time. We are hoping that he will fit me in on Wednesday, March 27th, but we are not counting on it. I am not going to count on it and then be disappointed. I have an appointment for April 11th, but I can’t wait that long. I can’t swallow anything in the meantime because of the lesions and they are so incredibly painful. I am on medication to try to kill the pain and steroids to try to help it, but nothing is working in the meantime. It just continues to worsen.
I have also been having bleeding not only from my rectum anymore. Instead, I am now suffering from nosebleeds as well. I never suffered from nosebleeds in my life, so for me now to have them as well, something has to be happening.
I am also having a extremely hard time going to the bathroom. I cannot go, if at all. If I do go, it is all mucous, and it also has blood in it. I am severely bloated and it looks like I am ‘pregnant.’ I joke around saying that I am ‘full term,’ but in reality, I am extremely uncomfortable. I really need someone to pop me or something because of how distended my stomach is. I am not the only one who can see my stomach and abdomen really distended, as it is really apparent to everyone. Having this bloating not only makes me uncomfortable, but it also further triggers off the autonomic dysfunction.
I also feel like I have a blockage in my abdomen. Perhaps that is why I am bloating as well and can’t go to the bathroom. Whenever I go to the bathroom and ‘push,’ the force doesn’t just go downward. Instead, whenever I push and the force goes down, it only ends up backfiring and I get air coming back up through my mouth like in the form of a belch. I know… it doesn’t quite make sense what I am saying, but I am trying to explain it the best I can. In short it feels like the force is backfiring and coming back up my mouth instead of flowing downward and coming out from below.
I have also been suffering from blackouts. Every time I go to the bathroom, I get blackouts. The doctors think it is my autonomic dysfunction and such causing it because of the pressure changes. But it is really freaky. There are even times hen I just can’t see because things go ‘black.’ Thank goodness though that it is only temporary and short-lived.
I also have been in a lot more pain than usual. My toes are killing me and it feels like there are hammers hitting each of my toes. You know when you are hammering nails and you accidentally miss and end up hitting a finger? Well that is how I am feeling nonstop with my toes. It is incredibly painful.
In addition to the pain of feeling like I am getting hammered, the toes in my left foot also feel like they are going numb and someone is putting a tourniquet around them. I never had this feeling before and it scares me. It scares me not just because this feeling is ‘new’ but because I am discoloring so much and I am so fearful that I am going to lose a body part or something. After all, even though my body has been discoloring for awhile because of my illness, it is worse than ever. It has never been this dark and usually in the past when I elevated the affected limb, the discoloration kind of went back to normal. However, now the affected limb remains horribly discolored even when it is raised. What makes matters worse is that even though my entire body is discolored, my left leg is the worse and it really shouldn’t be because I had a sympathectomy in it. It really makes me wonder why it is happening because I did have that surgical procedure.
I never know when I am going to discolor, as it can strike any minute. It is really scary. Not only am I discoloring in my legs and arms and my usual places, but my face is now discoloring, which is new. At least I was able to conceal the discoloration so that no one could really see it. People rarely noticed it because I knew how to ‘hide’ it even though occasionally people saw it because it happened in my hands and such. However, now that it is happening in my face, I have no idea how to ‘hide’ it. My dad is also getting very scared because we never had this before. I mean to have your face discolor… it is quite something to worry about. Not only is it something that I am really worried about, but I am really embarrassed about the discoloration too. It isn’t normal to discolor and people stare. Even when I was in the hospital and you would think that people would be more understanding there because that is where ‘sick’ people go… people were always staring. I know people are not used to seeing someone discolor, but they really don’t have to stare. You know? I am like a chameleon!
In the meantime, I have an appointment scheduled to see a vascular surgeon on Thursday. I really hope that this surgeon will have the answers, but I am fearful he won’t be able to help me further because he doesn’t do sympathectomies and I am fearful that another sympathectomy might be needed. After all, I had a sympathectomy the first time because if I didn’t have it, I definitely would have lost a body part. But this doctor was the first one that could see me, so we went with him because this is urgent. So fingers crossed that he will be able to help.
I have been suffering from severe spasms and cramps throughout my body, especially in my legs and feet. You know when you are in bed sleeping and you get those spasms that you can feel the muscle literally twisting and then you see like your limb or toe or finger twisting involuntarily? Well that is what my whole body feels like. I don’t know what is causing that but it is worse than ever. Perhaps it is because my bloods are so bad because they are falling so much.
Speaking of my bloods falling, not only are my heart doing so bad that I can easily go into cardiac arrest and have an arrhythmia, but I found out also that I am not able to clot lately. My clotting factors are off. In addition, my blood work has come back and it has shown that my pancreas is getting worse because my amylase is getting higher and higher, as well as my brain tumor is also worsening and growing. As a result, my pituitary gland is secreting more hormones than ever because the tumor is right on the pituitary gland. It just continues to worsen.
I am also having trouble seeing. My left eye is giving me so many problems seeing. Not only is it blurry, but it feels like there is extreme pressure in that eye. I really don’t know what is up with that eye either. I have been putting steroids in that eye, but nothing has been helping. I wonder if it is the autonomic dysfunction worsening it because it causes my eyes to be extremely dry since I can’t produce tears. As a result, my cornea is all scarred up and like sand paper. I hope that I didn’t rip the cornea like I have done in the past because the doctor said that with all that I am going through and the scarring, it is very possible. I guess I will have to wait and see and if it doesn’t clear up I will have to go back to the doctor.
I am getting worse and worse. I am really getting weak. I am having the worst case of jerks ever. You know how you have those dreams that you are falling and then you wake up because you jerk? Well, I have those jerks every so often without the dream. The jerks are getting more frequent and they are getting so huge that I can literally fall flat on my face or if I am on the couch, I can easily fly off and land on the floor.
So that appears to be all that is happening with me. To make matters worse, my mom isn’t doing too well. The stress of what is happening with me isn’t easy on the rest of the family. Therefore, my mom is now suffering and she really can’t afford to have this stress. She is so worried about me and I can’t have her stressed out since she isn’t ‘well’ to begin with. She suffers from MS (Multiple Sclerosis) and I don’t need her to get herself sick on top of all this that is happening. She is always putting me first and making sure that I am taken care of before herself that I think it is finally taking its toll on her. With everything that is happening now with me and such… medically and financially… she is now living on Rolaids because she is getting the worst stomach pains that she is literally doubled over. She is also bleeding from her rectum and such. She is going to a GI doc next week, but I really hope that nothing is seriously wrong with her.
Well… that appears all that is going on. I am still trying to keep a positive attitude despite all that is happening. I have a best friend that is trying to keep me going as long as possible. I am certainly lucky to have her. She is not only determined to help me find someone to help me and find a way of getting the treatment that I need, but she is determined to make me enjoy whatever time I have left. She makes me actually feel normal and not sick.
This friend is such a lifesaver. Not only is she trying to find all different ways to try to find help (whether it is financial or medical), but she is always there to have a shoulder to lean on. She is one amazing person because even though she has her own life, a son and a husband, as well as a career, she always finds time for me. She always finds time in the morning to make sure I am ok and made it through the night, as well as find time to check in on me throughout the day. She even takes the time out of her busy day at night to talk to me and discuss whatever needs to be discussed… whether it is a shoulder to lean on or just to have a typical conversation like a ‘normal’ person would have who doesn’t have an illness. In addition, she even has volunteered to take me places like to doctors when my dad can’t. In fact, there have been times when she was willing to even leave work to take me to a doctor or even to the hospital because I needed to go. Who could ask for someone better?
This friend really makes me feel normal!! I really feel like CINDERELLA when I am with her because when I am with her, I am like in a dream world. My whole life transforms and I go from disease to a ‘normal’ person enjoying life with not a worry in the world. We really have so much fun together and for the time we are together, I don’t have to worry about or think that I have an illness. I get to finally have fun and get to be “normal.” I get to “escape” being a disease. However, all good things have to come to an end and therefore, I always have to be back in time for meds and injections. Therefore, just as Cinderella transformed back to her usual life at midnight, the same goes for me at 2 o’clock because that is when I have to be back to take my meds. But at least when I am with her, I get to forget my worries.
This disease has robbed me of life in so many aspects and I literally became a slave to it. I lost so many things that people take for granted such as eating, walking, having friends, going out, having fun, taking showers, going to the beach, getting married, etc. There is so much that I want to do, but I cannot do it because of my illness. I can’t believe all that this friend does for me. She has taken me out and did things with me that I never imagined would ever happen. I have been dying to go to the beach for the longest time. I used to love the beach. So, she made it happen. She took me to the beach and even when we couldn’t see the water because of the dunes that were set up, she did whatever it took to make sure that I got to see the water… even if it took going on her back and having her carry me. In addition, she knew how much being a princess and getting married mattered to me. After all, doesn’t every girl have a dream since they are little of being a bride and wearing a wedding dress and such? So, she made it happen. She took me to this gorgeous boutique and had me try on all these gorgeous dresses. Even though I am not the prettiest because I am so very thin and emaciated looking, she really made me feel “gorgeous.” She really touched me when she even gave me her engagement ring to wear prior to trying the dresses on. I couldn’t believe she did something like that. This way it ‘completed’ the package. I only wish I could repay her for all that I she did.
My parents are so grateful for her as well. My parents can only do so much and they know how much a ‘friend’ is needed. They see how happy I am with her and how much happiness she has brought me. My parents have said they never have seen me smile so much as when I am with her. I smile because I don’t feel like a disease when I am with her. We do NORMAL things and talk about NORMAL things like books, movies, etc. After all, I am more than a disease and she sees it. She isn’t someone that just bypasses me because I am ill.
In fact, she has done the complete opposite. When most people have walked out in my life, this person has walked in on my life. She has researched my illness and continues to research it and has learned so much about it. Even she couldn’t believe how horrible of a life I was living with this illness until she saw it firsthand and read up on it. But to have someone in my corner and to take the time to actually learn about my illness instead of just making insinuations and such, it really means a lot. I really appreciate all that she has done and continues to do for me, and I really hope that she knows it. I treasure every moment that I am with her and have been capturing many of it on pictures so I can look back on it. In terms of the wedding dresses, I made a special album for my parents and me so that we will always have a momentum of me looking like a beautiful princess bride since I probably won’t ever see that day in reality.
Well… I guess that appears to be everything. I guess I will be going. I think I wrote enough. When I find out any new info or anything, I will definitely let you know. As of right now, I just hope that I bounce back and make a turnaround because things are just deteriorating so rapidly. I really hope that we find a way of receiving donations and support because I desperately need treatment, which is something that we can’t afford. I am keeping my fingers crossed!!
Thanks again for all your help. If you can help me out in any way… whether it is by spreading word that I need help and attention to my website, or even saying a prayer, I would really appreciate it!!!