What is going on? I guess it is catch up time for a bit since I haven’t written all week and I am leaving a week from today. Gosh… it is really getting close. One week from today I am off to Nebraska. Who would have thought that out of all the places that I would end up in Nebraska? My life is like the song ON THE ROAD AGAIN!! Never a dull moment. I just wish I didn’t have to travel and if I did, it was for better things.
One more week and I am out of here. I am hoping that I will make it there even though it is only 1 week away because I am not doing so well. I am rapidly deteriorating and it seems the closer we are getting to going, the faster I am deteriorating and the worse I am getting. I am trying to hold on as long as possible, but I must say… it is REALLY getting hard to do so. I never had such a challenge to do so. I have never suffered so much. I never thought that it could get soooo bad.
Things are getting to be extremely bad with me. They have gone from really bad to even worse than that. I didn’t even think that was possible. But… it is at the point where I am really wondering if just letting go isn’t the best thing for me. Of course I don’t want to because I have so much to live for and give to the world, but I must say…. I am really suffering and don’t know how much more that I can take. The pain is unbearable and I can’t take it emotionally or physically anymore.
I am literally climbing the walls. I have been maxing out on all my pain medications, but despite taking everything, the pain is just too intense to bear. It hurts to even move just about any part of my body… even a finger. I am so very weak as well. Between being so weak and the pain, I can barely even get off the couch. To get me up in the morning, it takes so much out of me. I can barely get off the couch or bed and it has even gotten to the point that I even try to limit the amount of times I go to the bathroom because I just don’t have the energy to get up and down to go. The pain and physical exertion is just too much to bear and it just takes too much out of me to go and therefore, the least that I have to move, the better that I am.
I have also been having so much mucous coming out of me. I don’t know what it is with me, but I can’t go to the bathroom without mucous coming out. It is basically all black too, so I must be bleeding from somewhere. In fact, the doctors have checked my stool in the past and they have confirmed that there is indeed blood in the stool. However, they are unable to find out where the blood is actually coming from. They are hoping that when I go to Nebraska that they will be able to find out where it is coming from because I am undergoing another surgery on Monday to “explore” what is going on.
Besides all the mucous coming out, I am suffering from the worst stomach pains and nausea. I have never been so bad. I can’t even swallow anything anymore. The minimal amount that I was able to swallow before, which was basically barely anything, has even been limited even more. Whereas before I couldn’t tolerate any carbs and was basically living on ices, pedialyte ices, and egg whites, it is even getting worse. Even tolerating ices is getting unbearable. I can’t even drink anymore. Whereas I was able to tolerate carbonated beverages to some point in order to get down my medications (the carbonation was the only thing that helped to get it down), I can’t tolerate anything anymore. Swallowing meds is basically impossible and just drinking alone is getting to be impossible as well too. My mom has been buying me all different flavored drinks, but nothing seems to be going down. Not only does everything not taste “right” or like it should, but my throat also just doesn’t want to swallow. It really is strange and scary.
As I said before, I can’t tolerate ices either. That part isn’t good at all because I was receiving some medication through the ices. As my bloods were very low, they were giving me medicated ice pops in hope that my bloods would rise. However, without me being able to tolerate the ice pops, my bloods will only fall further. I have been trying though constantly to get them down though because I know how important they are to get down since they have the medication in them.
I can’t even chew gum. You would never think that would be a problem, right? But it is. I can’t believe that something as simple as gum is giving me problems. I can’t swallow when I chew gum and plus… it gives me the worst stomach pains too. It used to be that gum was one of the few things that actually “helped.” Now I can’t even say that.
To make matters worse, with all this occurring, I am losing weight. I am barely weighing 70 pounds and therefore, I cannot afford to lose any weight whatsoever. I am really scared because I am basically walking on a tight rope with death as it is. My levels are so very low as they are, I can’t really afford to drop any lower. The doctors have already told me that if I was a male, I would already be dead because males can’t survive at the levels that I am. Fortunately, females can live at a lower level, and therefore, I am able to survive a bit longer. However, even at that lower level, I am already borderline with it. I really can’t afford to drop anymore.
I am so very weak with everything going on. Between the mucous, vomiting, weight loss, cold, etc.… it is all taking a HUGE toll on me. I really don’t know how much more I can handle. My cat knows something is definitely up with me as well because she won’t leave my side at all. She is such a smart cat in the sense that she knows when something is more wrong than usual. My parents call her my “babysitter” because whenever I am doing worse, she won’t leave my side and will follow me around everywhere. She will constantly lay with me and when I even have to just get up to go to the bathroom, she will follow me there to only return back to bed with me. It is like I can’t be trusted to go to the bathroom myself. She is such a wonderful cat. I don’t know what I would do without her.
Besides all these physical symptoms, my bloods aren’t doing too well either. My bloods are dropping significantly and it isn’t just my heart bloods anymore either. My kidneys and liver are starting to get into really big trouble as the levels in the blood are showing huge abnormalities with them. My entire body is just shutting down. I feel like I have blockages in my abdomen as well, but when I go to my internist, he only refers me to my top specialists because I am so complex and such. I way beyond the scope of most doctors and therefore, he refers me to my specialists because of everything that is happening with me. With everything that is happening with me, he wouldn’t even know basically where to start when dealing with those complicated problems.
So things aren’t doing so well. The doctors don’t expect me to live much longer and I am rapidly deteriorating. But… that isn’t stopping me. I am still “trying” to push forward and haven’t given up hope as of yet. I am still trying my best to survive, but I do have to say that it is getting very hard to do so. The doctors want me to get help ASAP. The doctors in California want me to come back to them ASAP so that they can put me into a huge coma and again put more tubes in me to try to “feed” me and buy me time til I get the transplant. However, I have to go to Nebraska and I can’t be in two places at the same time. Plus… with money being so tight, it is too hard to be able to go to both places. Something has to give.
Money is extremely tight and we have a hard enough time being able to afford to go to one of the places. I know that I have to return to California because the only reason that they allowed me to go home the last time was on the contingency that I would return in a few weeks. We had to leave because we ran out of money and plus I wanted to see my mom too since I was running out of time and such. However, I also need this transplant that I have been talking about, which is a multi-organ visceral transplant that entails getting a new stomach, small and large intestines, pancreas, and possibility of a new esophagus. Only 8 hospitals in the country do this transplant and it is extremely risky and dangerous. Out of all the transplants being done, this is the most dangerous and runs the highest risk of rejection. Although California does do this transplant, the insurance will not cover me to have it done there. My insurance will only cover me to have the transplant performed in Nebraska or Indiana. Supposedly, my insurance will only cover me in California if these places in Nebraska and Indiana “deny” me. But, they have to “deny” me first.
Even with the insurance company covering me, the cost of this transplant is astronomical and I will need so much help in order to be able to achieve this. I don’t know honestly how I am going to be able to afford it and it really scares me. It is such a shame how my life is so dependent on money, which is so scarce at the moment. Therefore, I am really hoping that other people will help me out in the world. I figured that if everyone just donated $1, it would really add up and really help me. I have tried so many ways to try to raise money, but nothing has really come out of it. If anything, it might be good and seem like a good plan of action in the beginning, but it quickly comes to a halt. I have tried writing to the media, hanging flyers, reaching out on Facebook, writing to famous people (even the president and queen Elizabeth because I am so desperate), but nothing has come about. It really bothers me that people get on television and get coverage and yet when I try… nothing happens. I guess it is as the saying goes “It isn’t what you know… it is who you know.” But… I am still hoping that something might come about and change.
Even with the insurance covering the transplant, the cost of my treatment is astronomical and as a result, we can no longer really afford it anymore. We have made so many drastic cuts, but it is at the point that we can’t even afford the transplant (even with the coverage). We can’t even afford the current treatment that I am receiving now without the transplant. It is just so expensive and this disease has become such a financial burden on us. The copayments (just in copayments we spend at least $25,000 a year), deductibles, medications (I take over 50 pills daily and not all are covered by insurance), doctor bills (I see many specialists and not all are covered), traveling expenses (all my doctors are not local and the closest ones are Manhattan, which are still quite a distance and take parking fees that charge a lot and gas… not to mention the distant ones like the ones in California, Nebraska, and Florida, which require plane fare, hotel accommodations, etc.). To make matters worse, all this time of seeing doctors requires my dad to miss working. When he doesn’t work, no income is coming into the business and therefore, his business is suffering as well. So, not only am I directly affecting the family because they are trying to pay my bills and can’t, but because my family is trying so hard to take care of me, the business is suffering because my dad can’t be there for it and as a result, it is affecting us too. It is like a no win situation.
But… we are headed to Nebraska in one week. They are supposed to be the largest center for my disease. They insist that they really understand my illness because they insist that they see more cases of me than any other doctors in the country. Even though they claim that I am one of the “worse” cases that they have heard about and will probably see, they said that they are used to dealing with my disease and know how each case is so unique and how not one specific treatment works for everyone. They said that whereas a doc or a hospital might see one of me in their lifetime, they see about 10 of me a year. So, at least that is a little hopeful.
However, I do have to go back to California and I also will have to go back to Nebraska since they are allowing me to come home for Thanksgiving. Nebraska is only allowing me to come home on Thanksgiving on the basis that I will return to have more procedures performed. However, like I said before, I can’t be in two places at the same time and therefore, I really need to decide on which place I am going to be better off going to. I am supposed to be going back to California December 9th for the coma treatment and to get the tubes, but if I end up going back to Nebraska, it will of course have to wait. Either way… it will entail more money and more expenses. Therefore, we really need to find a way of raising money because there is just so much money that is needed for this. Plus, since we are just coming back from Nebraska two weeks earlier, it really doesn’t give my dad a lot of time to work and catch up on the work that he missed out on. So, it really is going to be a hardship to go back to Nebraska or go to California two weeks later after Thanksgiving. However, we really don’t have a choice because my life literally depends on it. I can’t afford to put it off any longer because I am rapidly deteriorating and can’t afford to wait. I won’t make it.
The doctors will be picking us up at the airport and then bringing us back to the airport when we are ready to go home. I really want to be home for Thanksgiving. In fact, I was promised that I wouldn’t be “away” for thanksgiving. It was really important to me to spend Thanksgiving home this year with my family because I have a feeling that this is going to be my last thanksgiving and therefore, I wanted to make it memorable and spend it with my family. Both my parents did promise me that this would occur, but when I ended up getting sicker, they changed their minds.
As I got sicker and it became known that I had to go to Nebraska to see doctors during this time, their story changed about being able to remain at home for Thanksgiving. Even though it was so important to me, my parents changed their mind and started to downplay thanksgiving by saying how it was “no big deal” or how we could “celebrate it another day.” However, it was important to me and I didn’t want to miss it. But as much as I pleaded that I wanted to remain home during this time, I knew it was a lost cause.
Fortunately, the doctors are being really nice to me because despite me being so sick, they are allowing me to come home for Thanksgiving. They know how important it is for me to be home for this thanksgiving and therefore, they are allowing me to return home for the holiday. As a result, we will be coming home on Thursday for the holiday on the basis that we will return shortly afterwards. Even though I usually am the one who cooks thanksgiving dinner and would have liked to cook it again this year, at least I will get to still be home for turkey dinner providing that we aren’t delayed or something. Coming home and not cooking is better than not coming home at all.
Since I will not be able to cook Thanksgiving dinner, we are going to end up bringing in Thanksgiving dinner. We are having it delivered from a fish place/market that has amazing food. The person that owns the place has been extremely nice and has been taking great care of me. He has been simply amazing as being a great support and also in trying to help me out in any way possible. You really don’t find a lot of people like that.
This fish market happens to have the best food out there. The fish is out of this world and they have side dishes that are soooo yummy too. The owners are amazing people too as they try to help their clients out in anyway possible and they really get to know each and every person. In fact, they basically know what each person wants because they remember what they like. I don’t know how they do it because they do have a lot of clients too.
Anyway, the owner really is nice to me because not only does he prepare delicious foods for my family and me, but he also has really been trying to help me in any way that he can. He knows how difficult it is for me to eat and stuff and therefore, he has been trying his best to try to give me things that I can tolerate. It is so nice to know that someone is taking so much time and care to help me out and try to make me better. He will literally go out of his way to prepare something for me just to see if I can “tolerate” it. He really knows how to “take care of me.” In addition, he also constantly talks to me and treats me like a “person!” He will always have a smile and be there to talk to. Therefore, it is really nice to go in there because it is someone to actually talk to and feel like they understand and wanna listen. I can’t even begin to tell you how much they help me out. In fact, he won’t even let me give up at all. He is one of the few people that continue to “push” me and won’t let me feel sorry for myself. There aren’t many people like him.
So we will be getting thanksgiving dinner through him even though they are a fish market. I can’t wait to have it. I just hope that I can eat it. You should see the dishes that they have… they are simply amazing. You have choices of soups (matzoh ball soup is my favorite, to all different side dishes (baked apples, candied yams, candied carrots, chopped liver, egg barley, noodle pudding, stuffed cabbage, potato pudding, etc.), to brisket, to clams, to grilled mixed veggies, to different shrimps (oregenata, scampi, stuffed mushrooms with crab, stuffed artichokes, tomato & mozzarella, etc.) to sweet sides and desserts (rice pudding, tsimmis, braised potato, soufflés etc.), to baked salmon, belly lox, herring, sturgeon, sable, pickled lox, to all different salads (calamari, chicken, cole slaw, cucumber, egg/mushroom, halibut, macaroni, marinated asparagus, pickled beets, etc.). I can’t wait to see what we are going to get. He said to me that he will take “care of us” so I have no doubt that he will because he always does. Since they won’t be open on Thursday, he is going to deliver all the food on Wednesday and therefore, all we will have to do is heat it up for dinner on Thursday. He is already going to have the turkey all carved and ready to go so all the hard part is all done. So, not only will our thanksgiving dinner be really “yummy” but it won’t be a messy one either. After all, we all know how cooking a thanksgiving meal requires HUGE cleanup afterwards. At least we won’t have to be bothered with that.
I really don’t know how to pack for Nebraska. I really hope that it isn’t going to be cold in Nebraska. I heard that the other day it was close to 80 degrees and then the very next day it was a high of 35 degrees. I really hope that it isn’t that cold because I hate the cold. But, we shall see.
Like I said before, we are leaving for Nebraska on Sunday. We are leaving bright and early and we should be in Nebraska by 1 in the afternoon (Nebraska time). It is going to be another long flight, as we have another stopover in Chicago. I think total traveling time is 7 hours or so. But at least it is a bit close (Not much but a bit) than California.
I have surgery scheduled for Monday. I am supposed to have all this special preparation for it, but I really don’t know how it is going to happen if I am first arriving the day before. But apparently the doctors said it was “ok.” I know that part of the prep requires me to be “completely empty” and “cleaned out” so I honestly don’t know how they are going to do that if I am first arriving on Sunday. But I guess I will know what to do when I when I speak to them this week.
Well… I guess that is it for now. I really hope that I get better. I can’t live like this anymore. It is not fair to me anymore. Haven’t I suffered enough? I am so tired of being in pain. I am tired of suffering physically. I am tired of suffering emotionally. I see other people and they have lives… they have families (as they have husbands or wives and kids)… all something that I want and yearn for. I really would do anything to get back my life and be able to have all that other people take for granted. People don’t appreciate what they have until it is taken away from you, but I know far too well how fast all that can be taken away and how lucky you are to have that if you do have all that “great” and “wonderful” stuff in your life. I never imagined my life like this. I want to be able to have that career I desired all my life, family, etc. It is so unfair that I am suffering like this and no matter what I do, I can’t come up for air. It is like every time I try to get better and no matter what I try… it is never good enough. I just want to be “normal”… if that is ever possible again! I miss my life and it hurts… hurts more than you know!! I try not to let it bother me, but it really is hard. It is hard to keep a smile when beyond this external façade, I am really suffering… both physically and emotionally… not just from this disease directly, but what it has left me with.
As I am leaving on Sunday, I will try to write at least one more time to update you on all the final plans and such of what is going on. Things are still chaotic here from the storm. So many things are still underwater and such. We had a nor’easter here the other day and there were more power outages again. Luckily we only lost power for 2 minutes.
Wanna hear something that I think is ironic? I love the show REVOLUTION. However, I think that it is awfully funny how this show came out this year and now we are basically living it. When the show first premiered, it asked the question, “What would you do without it all?” Who would think that we would be able to answer it because we are actually living it!! We are living the actual television show. Who would think?
Even though things have gotten so bad, I have been trying to keep myself busy as much as I can. I have become addicted to the iPad game BINGO. I don’t know why but I just happen to love that game. My mom said that I am just like my grandma because she used to love to play BINGO as well. Whenever we went away when I was younger, I always had to play BINGO when they would have it as a “social activity.” I have also been busy reading a book my J.K. Rowling called “CASUAL VACANCY.” I just started it, but it appears to be good. She is such an amazing author and since I loved HARRY POTTER so much, I figured that I would try this book as well.
There are so many movies that I am wanting to see too. However, with Nebraska being so close, I don’t know if I want to see it now or wait because my dad and I always watch them on the plane. I definitely want to see the new SPIDERMAN movie and BRAVE. Of course I want to see MEN IN BLACK III and THE DARK NIGHT RISES, but they aren’t coming out til after we come back from Nebraska.
I did realize though that I am going to have problems watching the MACYS DAY THANKSGIVING PARADE. In my house, it is like a tradition to watch the parade. We watch the parade every single year as a family and it isn’t over until we see Santa coming at the very end. However, since we will be coming home that day, we won’t be able to watch it. However, I was thinking that perhaps we might still be able to watch it because if our plane has Wi-Fi, we might be able to get it on the iPad through the Internet. Not all the planes have Wi-Fi, but most do. So… hopefully we will be on one of them.
It is going to be a long and hectic week. I have so many doctor appointments this week in preparation of going to Nebraska. I also have to pack and get everything situated. So… I guess I will be going because not really feeling too well either. Talk to you again! As for now… I will just have to keep my batteries charged because I am the ENERGIZER BUNNY and I keep going and going.