Happy Thanksgiving. Just want to write a bit because I haven’t written and want to wish you a very HAPPY thanksgiving. Hope you have a very wonderful thanksgiving and eat plenty of yummy turkey. Make sure you eat some for me because I can’t eat any. One day I will be able to… but that will only happen if I get the transplant or a miracle happens… all which won’t be possible without the help of others. I really can’t afford treatment anymore, but I am hoping that especially with the holidays being here, people will be willing to give more than usual. It would certainly be a wonderful “gift” to be able to continue to treatment through the donations that I receive. It would be a gift of “life,” which would be the BEST gift in the world.
Anyway… today is Thanksgiving and it is definitely not the same as it always has been. You can see how much my illness has taken a whole toll on my entire family. First off, my family used to remain at home and spend the day together. However, my father is forced to working this thanksgiving, which is something I really am upset about. Secondly, even the whole spirit of thanksgiving is gone. It used to be such a ‘fun’ holiday with my dad making his famous ‘gobbling’ all throughout the house. Now the house is filled with nothing because everyone is too tired and sick to do anything. It is like my illness has wiped everyone else and took the word FUN out of everything. Thirdly, it is also the first time that I am not cooking. I always cook thanksgiving meal, so for me not to cook… it shows that things aren’t good. Nothing usually stands in my way of cooking and for me not to cook… something has to be wrong. Even my dad says so! My dad says that for me not to cook… something isn’t right… I have to be really sick!!
My dad is certainly right. Things have gotten so horrible. I really don’t know how much longer I have. My bloods are dropping, my organs are shutting down, my weight is dwindling, etc. The pain is getting so intense that it goes from the surface all the way down to deep in the bone. The pain is relentless and doesn’t give up. I never get a break from it. No matter what medication I take, even when I max out on all the medications that I have… nothing cuts it. I am in so much pain and agony that sometimes I wonder if “passing on” isn’t the “better” option. However, I know how much it would pain my dad and how much my dad would never get over it, so I continue to push onward.
Everything is touch and go with me. We never know literally from each day if I am going to wake up in the morning. Even my brother has noticed a great change in me. My brother has noticed how I really don’t even move. He has even said to me how I don’t really do “anything” anymore except lay on the couch. I basically can’t get off the couch because of how I am feeling. I am just way too weak and in too much pain to move. I keep wondering when the pain is going to stop or if this is going to be the very last day on earth. But… each time I think and hope that it would all end and I would move on, I keep thinking of my dad and I continue to push onward.
I only wish that a “cure” or some help would arrive soon because I honestly don’t know how much more I can take. I am really suffering and I don’t know how much longer I can tolerate. I really don’t want to leave my dad because he wouldn’t be able to go on, but it is getting to the point where it is just getting to be “too much!” Time is of the essence, as I am deteriorating rapidly, but treatment is really dependent on others because we can’t really afford it anymore. Even though my family would do anything to get me well, the bills have gotten to great that we can no longer afford the necessary treatment to try to get me to “live.” Therefore, even though we have made major cuts, we have had to delay treatment and just hope and pray that enough money will come our way so that we can continue treatment. After all, no one does anything for free and since we don’t have enough money, I can’t get treatment when there is nothing to pay for it. So… I am just hoping and praying that perhaps we will get some donations with the holidays being here because it is the time of “giving” and such. I have tried one more time to muster up the strength to write to all the media to ask for help, but who knows what will happen. I have written to all the talk shows, news, etc. but I have done that in the past and nothing has happened. Maybe this time will be different, but I have to be prepared for it not to be because it hasn’t been so far. But, I am praying that it will be.
I really don’t want anything to happen because my father would never be able to handle it. My dad watches me act the way I am… unable to move… and he literally “bribes” me so that I don’t go on. He thinks that I am in control and he says that if something happens to me that “no one in my family would take care of him or herself or take their medications.” My dad says all these things that he thinks would ‘force’ me to stay, but he doesn’t realize that as much as I don’t want to go… I don’t have control over it. I really know deep down how much he loves me and how much he would NEVER survive if I passed on. He would definitely NEVER recover.
Dad says that I really need to hang on because we are supposed to be leaving for Nebraska on December 3rd. We were supposed to be going to Nebraska this week, but the doctors called it on me. I have gotten too sick that the doctors don’t want me traveling back and forth. The doctors want to do so much intensive testing in order to know me from head to toe, and it would take longer than the amount of time that we had originally planned to go to Nebraska. We were originally only planning for spending a few days there, as we were coming home Thanksgiving morning. However, the doctors insist that I am way “too sick” and the amount of testing and getting to know me would take much longer than that.
Therefore, we really need to maximize our days. We can only spend a certain amount of days in Nebraska because of the amount of money that it costs. Therefore, we can’t afford to spend days in Nebraska where they wouldn’t do anything such as on thanksgiving. If we were there for that day, we would be paying for spending the day there and nothing would be done because they don’t work that day. So, between everything happening and so we would maximize the amount done on the days that we were there, the doctors insisted that we come after Thanksgiving. This way they can fully devote EVERY day to helping me instead of paying for days where they are “off.”
So… even though we have to put off going, it will work out better because our money would be put to “better use” and we will get more things done. I really need exploratory surgery as well, but the doctors want to do all this testing beforehand so that they can get to know me from head to toe because they are so very scared for my life. They said that they never saw someone as “sick” as me, and they are truly scared for my life. They don’t know how I currently existing, and they are afraid to do anything because the slightest wrong move can really “kill” me. So whereas before they were going to jump right in and do surgery to explore what is going on… now that it is getting closer and such, they are having meetings and have realized how truly sick I am. Therefore, they don’t want to do anything without thoroughly investigating what on earth is going on with me. So… that means more testing and more days. That is why (like I said before) we needed to wait til after thanksgiving because we needed to use every day to our maximum because more tests were needed than originally planned.
The hospital in Nebraska are trying to help us out in every way possible and trying to keep my spirits “up” as well. They are hoping that they will be able to help us out. I am really nervous because who would think that I would ever end up going to Nebraska? I mean… out of all the states… who would think I would end up in Nebraska? The only bad thing about putting off going to Nebraska til after Thanksgiving (besides having to last longer and praying that I make it there because it is awhile off) is that we had to delay going back to California. We were supposed to go back to California for further treatment because the last time we left there, we had made them a promise that we would return for more treatment since we had to leave since we ran out of money. Now that we had to delay going to Nebraska, it looks like we will have to delay California as well because I can’t be in two places at the same time. But, I am hoping that perhaps Nebraska is just as good or hopefully better and therefore, I will be able to get everything done there instead of having to wait and go back to California. But… only time will only tell.
So… dad and I are planning on leaving for Nebraska on December 3rd. I am supposed to have exploratory surgery along with all this intensive testing when I go. But, when I find more information out, I will of course let you know. I do know that instead of doing everything ‘outpatient,’ which was originally planned, the doctors are now putting me inpatient because the stuff that they need to do is too intensive and I am in too ‘bad’ of shape. So… I will be in the hospital during this entire time.
At least my dad won’t be so far away. The doctors are supposed to be picking us up at the airport, which is something I never once heard of in my life. I mean… who ever thought that docs would do something like this? Anyway, we are planning on staying at the hospital because they have special suites connected to the hospital that act like a hotel. This way you don’t have to leave the hospital whatsoever and everything is there. I am so glad that we are staying there for multiple reasons. First, it is really cold there in Nebraska. So… the less we have to go out in the cold weather, the better I am because I hate the cold, as it goes right through me. Second, at least I know my dad will be right there in case I need him. I know that if something should happen that he would be at the hospital in a matter of minutes, but at least I know that he is literally right there in case something should happen, especially with what happened the last time I was in the hospital. The last time I was hospitalized, my heart ended up stopping and we had lots of other complications. Things were really touch and go and even my dad felt the pressure. At one point, my dad even went south to Los Angeles when he was supposed to go north to San Francisco because that was where the hotel was located. However, he left the hospital very late at night and with everything going on with me, he didn’t realize that he was going in the wrong direction until he was like 2 hours over and saw signs saying LOS ANGELES. No wonder he couldn’t find the airport when he was looking for it because he knew that the airport was on the way back to the hotel and he was seeing it. My dad thought for sure he was sleeping in the car that night. But, he did find his way eventually back to the hotel that night even though it took him so much longer to get back.
It is also a good idea that we stay at the hospital because it will be so much easier on us. We have to go for bloods one day at like 5 AM. Can you believe it? I can’t believe that they are making me go for bloods like that early. So, staying at the hospital will certainly be better in that aspect too because we are there already instead of first having to first travel there. You know?
I just hope that I can make it to Nebraska. As I said before, things have really been getting bad. My cat, Missy, knows it has been getting bad because she doesn’t leave my side. She is like my ‘babysitter’ because she doesn’t leave my side for a minute. I call her ‘twinkle toes’ because the minute she hears me stirring, she comes running if she isn’t already with me (which she is already 99.9% of the time). She will literally follow me everywhere. Whenever I finally muster up the strength to go to the bathroom, she will literally follow me to the bathroom so that she can only follow me back to bed afterwards. She also constantly keeps “meowing” and talking to me. It is like she is trying to tell me something. She always makes her presence known. I must say though that it is nice to have her around all the time because at least it is someone to be with even though she takes up the entire bed.
I am trying to hang in there, but it is getting harder and harder. I can barely move nowadays. I can’t even make it up the stairs anymore and as a result, I stay downstairs until the very last minute til its time to get up to bed. My dad keeps telling me that he will “carry” me up, but there is no point because I will only have to come back down to finish getting ready for bed or to do other things before I go to bed for the night. So, I wait til everything is all done to finally go up the stairs for good.
With everything happening, I am scheduled for an emergency ketamine coma on Saturday. Dad is taking me first thing in the morning for it. I really need it because I am suffering so much and I don’t know how much more I can take with the pain because I am literally running up the walls. Hopefully it will help. IF nothing else, it will give me at least one day of being pain free because when I am in the ‘coma,’ I feel absolutely nothing. It is like I am in a different world. People wonder why I would do something so intensive for just one day, especially when it all comes back after the coma ends. However, if they were suffering the way that I was… they would do anything to get any relief. Plus… the disease is spreading like crazy and hopefully the coma is ‘holding’ it at bay. Hopefully, it is stopping its progression or at the very least slowing it down because it is spreading like a wildflower.
I just feel so bad because Dad has to take another day off. I really feel bad because not only is dad taking off all those days when we go to Nebraska, but he now also has to take off another day to take me for the coma. Money is extremely tight and we can’t even afford the bills the way we are now. With missing more work, it is going to be even harder. Each day missed is detrimental because when he doesn’t work, there is no money being made. I am so afraid that something is going to happen to the business because there is no work going out or being done when my dad takes off. The company really suffers. I am soooo very scared because we are so dependent on the company as well because my dad and mom’s income depends on it. If the company makes no money, then my parents make no money and therefore, we have no money whatsoever to pay the mortgage or the bills… let alone the treatment that I need. So… I am really scared. If something should happen to the business or even my house because we can’t afford the bills or because the work isn’t going out enough since my dad is always with me (trying to save my life), I would NEVER forgive myself. My family has given up way too much for me and I don’t want them to suffer anymore than they already have. It isn’t fair to them!
As a result of my dad having to miss so many days, my dad has to work Thanksgiving. I am really upset about this because my dad is so overworked and needs a day off. Plus… Thanksgiving is “family” time and should be a day spent at home with the family relaxing. I was really relieved to be able to be able to spend Thanksgiving at home this year because I was told that unless a “miracle” happened, this was going to be my last thanksgiving. As a result, I really wanted to spend it with my family. But, I really wanted my dad to enjoy it as well. Yet, with going to Nebraska in the upcoming week and now going for the emergency coma on Saturday, he has no choice but to work on thanksgiving. He is so exhausted and such that I am so upset that he has to work on this special holiday.
I only wish that we could spend this holiday as a family. I wish my dad didn’t have to work. We used to all always spend the day together watching the parade, watching MARCH OF THE WOODEN SOLDIERS, cooking turkey, etc. It was a day for “family” and a day for relaxation, especially for my dad because he works everyday. However, this year it is not going to be so for my dad who desperately needs it. My dad is so overworked as he works 7 days a week from like 4 AM til not getting home until 7 PM. He is so tired from working that he can barely move. It isn’t like he is even sitting in an office during this time either. Instead, he is physically doing work, driving, etc. I feel so bad and I am so worried about him too because he is no youngster. I am so scared that something is going to happen to him, but he continues to do this because he tries his hardest to support us. There is nothing that he won’t do for his family. I just hope that nothing happens to him because if it does, I would never forgive myself!
Well… Turkey day is today. Unfortunately I wont be eating it though. One day I will be able to eat it. This is the first time we ordered the turkey because usually I always make it from scratch. But, I bet that since we had the turkey made, it is going to come out extra delicious. The place that made the turkey always has delicious food, so I have no doubt that the turkey won’t be extra yummy too. I am just so grateful for all that the place that made us the thanksgiving dinner did for us. Even though we did order a lot, he didn’t charge us as much as it should have been. Thank goodness because I don’t know how we would have been able to afford it. I of course chipped in with money so that we could have the thanksgiving dinner because it did come out to more money than if I cooked the dinner myself and after all… it is kinda my fault that we are spending money on the dinner because I could have cooked the dinner if I really “forced” myself. But… I really wasn’t in any shape or form to do so and therefore, I thought it was only fair to chip in with the money. I also thought that it would make it easier because I wouldn’t have to spend 30 minutes harping on my dad to help me clean the turkey and put it in the pan (it is too heavy for weak little me to pick up and such), spend all that time and money on electricity to cook the bird (we all know how long it takes to cook a turkey), spend all that time wrestling with the bird to carve it because it is a pain in the butt to carve, and spend all that time afterwards cleaning up (we all know how messy making turkey, carving it up, etc. can be). So… I thought it would also be better off.
Hopefully dinner will come out to be extra delicious, but time will only tell. We are planning on having of course turkey, sweet potato pie, candied yams, rigatoni a la vodka, stuffed mushrooms, braised potatoes, zucchini soufflé, grilled veggies, and pickled sweet peppers. We will see how good everything turns out. Even though I did “order” it in, there is still stuff to do to prepare thanksgiving dinner, as I have to finish preparing the bird, finish cooking the bird even though it basically is all done (but I gotta prepare it with gravy and such), making the side-dishes, finish carving the bird, etc. So… there is still plenty to do today and I will still have my hands full even though I tried to make it easier on me.
It really has been some year for me. Even though I am so thankful for so many things like my dad, the limited amount of people that has shown that they cared even though I am so far away from my goal and having an extremely hard time of coming up with money for treatment… I really lost a lot. It really has been a bad year for me as a whole. I lost my best friend, I lost my grandma, and I really have deteriorated a lot. I am here suffering still and no cure still remains to be in sight. Hopefully, next year things will be way different and I will be so thankful for everything that has happened.
Well… I guess I will be going. I have started a great book now that the holiday season is here. I like to read holiday books only during the holiday season and once Christmas day passes, I don’t like to read “holiday books” any more. Something about reading a holiday book during the year when it isn’t the “holidays,” it doesn’t seem right. So I am reading this new James Patterson book called MERRY CHRISTMAS ALEX CROSS. It is extremely good and I strongly recommend it.
With the holidays around the corner, one thing that I was wanting was this big teddy bear from the VERMONT TEDDYBEAR company. It was like 3 feet big and was wearing a nice comfortable footie! It was so cuddly! I thought I would put it in bed with me since I am always in bed as it is and it would be nice to “lay” against. It would be like a “body” pillow. I thought perhaps it would not only be nice to have, but it would be nice to cuddle and would also make me more comfortable in bed. I am such a stuffed animal freak even though I am 30 years old. However, it is expensive, and I don’t have money like that to waste. So… I guess that big teddy bear is just going to have to wait!!
As a result, my mom did buy me bear to bring with me to Nebraska. It wasn’t that 3 foot bear, but it was a smaller one. It was a BIG surprise to me because I wasn’t expecting it whatsoever. It is s VERMONT TEDDYBEAR and I will treasure it forever and ever. It is so special to me and I will always have it because supposedly if anything ever happens to it, it can go back to the “teddy bear hospital” and they will fix it. The teddy bear is simply adorable. Even though I won’t have her physically with me in Nebraska, at least I will have the bear. I am including a picture of the bear in this blog. It is wearing a “footie” and it is so adorable. My mom named the bear and even put the name on its “footie.” She named it “Falbear!” It is also wearing a hospital bracelet. Finally, it has a special note on the pad of one of the hands. She had embroidered into the pad of the hand the message “I love you!” So… it will be extra special. I can’t wait to receive it. It is supposed to be delivered on November 30th. I am counting down the days til I receive it.
As for me…. I continue to deteriorate. My bloods are continuing to drop and my organs are continuing to fail. I also think that I might have a rupture in my intestines or at least a tear because the mucous that I was expelling has “changed” a bit. Things just continue to worsen. But, I am hoping that things will get better, especially with Nebraska around the corner. I just have to make it there. I am also hoping that better things will be happening, especially since the holidays are here. I am hoping that I will get the best holiday gift, whether it is a Chanukah gift or from Santa, but I am hoping that I will at least get the gift of a chance of “life.” But… I know that won’t be possible without the help of others. If you can please help out in anyway possible… whether it is by donating, spreading the word of my website and that I need help, saying a prayer, etc. I would appreciate it beyond words. I can’t tell you how any little thing that you can do is so much appreciated. I really have a long road ahead of me and it won’t be possible to conquer without the help of you and the help of others.
Again, Happy TURKEY day and I will write again soon!
Here’s a comic I thought you might enjoy: