I just wanted to write a bit because I am not doing so well and besides not feeling well, I am not doing well emotionally. I am tired of seeing my life slip away and nothing good happen. I just hate just sitting back and watching my life disappear without anything good happen.
It just isn’t fair. I don’t know what it takes to get somewhere in this world. Actually I do know… it takes KNOWING someone. I know how the saying goes… “It doesn’t take what you know, it takes who you know!” but I so wish that saying wasn’t true because the truth is that I don’t know anyone. No matter what I do… whether it is to try to raise money so that I can receive the lifesaving treatment that I need, bring attention to my illness, or even try to fulfill a dream… I never get anywhere. It pains me so much to know that I try so very hard to do all this and it just never happens. Yet, I put on the TV or pick up a magazine and I see so many people with illnesses being featured that they were ‘helped’ with funds to save their lives, they received the media attention that they needed, or that they even were granted one of the wishes that they wanted before they died.
I was very active before being afflicted with this disease. I was an extremely hard worker and always on the go. Yet, now I am facing death and this disease has taken everything away from me. I have become basically to just ‘existing’ in the world. I can no longer eat, go out and have fun, walk, take showers, be touched, etc.
I try to keep an amazing outlook on life even though I have been suffering with this horrendous illness, but it is so very hard. It is even harder when whatever you do is basically not even acknowledged or it is basically ‘shut down’ and nothing works out. People don’t realize that when they have their health… they have everything. Yet for me… I am not that fortunate. Unfortunately, I am cursed with this horrendous disease and I am dying. I am rapidly deteriorating and desperately need help. Yet… like I said before… no matter what I do… I feel I am constantly being knocked down.
Without treatment, I will never survive. In fact, I am deteriorating so much lately and quickly that if something isn’t done quickly, the doctors really don’t know honestly how much longer I am going to be able to hang on. There is so many nights already that we don’t even know if I am going to make it through them. But of course nothing in this world is ‘free’ and treatment for my disease is extremely expensive.
Being sick for so long, it has really exhausted my family. We really can no longer afford the cost of treatments. Believe me… if there was a way that my family could pull it off and afford them… they would definitely afford them. We hate being criers, and we were never criers in the past. In fact, we were always the first to give to others. However, now that the tides have turned and we are the ones who are in need of help, it is a shame that we can’t receive the help that we always gave to others that were in need. It is just a shame. I know it is ‘better to give than to receive’ but I wish that someone would just give to me too because I am really getting bad and I don’t want to die. I wish someone would help me before it is too late.
I hate begging and pleading, but we are really not able to afford the very lifesaving treatment I need. We have exhausted every possible option such as taking out loans, credit cards, etc. but there just isn’t any money to come by. We barely even have money for the mortgage, which we have trouble paying and we even have trouble putting food on the table at times as well. That is why it is so important that I receive help from others.
I need so much treatment that is expensive such as surgeries, medications, specialists, etc., and all my treatment isn’t located in the local New York area. Instead, we have to travel across country to seek the knowledge of top specialists such as in California and North Carolina and Mayo Clinic in Minnesota because my disease is so complicated that not many doctors are familiar with it. In fact, very few doctors even do the ketamine comas that I desperately need and there are only 6 hospitals in the United States that even do the multivisceral organ transplant that I require, which includes receiving a new stomach, small and large intestine, pancreas, and liver. Even though we do have a great and expensive health insurance plan, it really doesn’t help much because not all my treatments are covered and it also goes way beyond what the insurance covers. It is amazing how health insurance is ‘good’ until you really need it. The copayments of seeing doctors, medications, surgeries, procedures, hospital stays, etc. as well as the costs that aren’t covered such as the traveling costs, the actual cost of the insurance plan, the medications and specialists that are not on the plan just add up. After all, I am on so many medications that I take over 50 pills a day. Without meds, there is no way of functioning. When you have RSD light bothers you, sound bothers you, clothing, sheets, a breeze, loud noises or even vibrations can cause an extreme amount of increased pain.
In addition to the travel, lodging and medical treatment, I need to have someone with me for treatment. As a result, I am fortunate to have my dad be able to accompany me. However, when my dad goes with me, it means him taking time away from work and that means that we cannot make money. As my dad owns a business, there can be no work going out and no money being made when my dad isn’t’ there. So we really suffer with that as well because not only is my family suffering by not having my dad available to work and bring in an income when he is with me, but the business also suffers because the work can’t go out.
It is so unfair because no matter what I do… it just never works. Yet… I see on TV and read in magazines how other sick people are receiving the help that they require. I have tried numerous things such as making posters, making a website, writing to the media, writing to famous people, spreading the word through Facebook, etc. but nothing really has come about. Even though I have received some donations, which I am extremely thankful for, it has been done over a year’s time. As a result, it really wasn’t much because the amount of bills that added up in that year far outweighed that amount. It is one thing if this amount was made in a month or so, then it could possibly pay for a treatment. But for it to happen in a year, it really doesn’t cover much.
I just wish someone would pick up my story. I know the economy isn’t in the best shape and people don’t have money to spend, but even donating $1 would be helpful because every $1 is one less than I have to come up with. If I had the media attention then my story would really get out there. I would finally get the attention that I would need because my story really needs to be heard instead of it just being known in my neighborhood. If everyone who watched the program on TV donated that $1, it would clearly add up and be extremely helpful. But the trick of getting funds is for people to be aware of my situation and unless the media spreads it, I don’t foresee that happening. Obviously the way I have been trying to spread the word (through Facebook, posters, my website, etc.) isn’t’ enough. I need the media attention in order to do this.
I hate turning on the TV or reading magazines and seeing how other people receive the ‘help’ that they need or they make a wish because they are dying and they get it granted. In addition to trying to get ‘help’ for my treatments, I have also tried to write letters to famous people in order to try to fulfill some wishes that I have. I know that I don’t have that much time left and I really do have a bucket list that I would like to fulfill before I die. If I was under 18, I would be able to do MAKE A WISH. However, since I am considered an ‘adult,’ I am not granted with the same ability.
I only wish I could get one of my wishes fulfilled. This disease has robbed so much from me. I can no longer walk, eat, go out and have fun, etc. This disease has forced me to become isolated and has taken away all the joys of life. I only wish I could have some of my wishes fulfilled before I die because living the life I am currently living is not a life to live. As a result, I have made a BUCKET LIST and some of the stuff on my list includes meeting some people that I always wanted to meet. However, none of my wishes ever come true because it isn’t what you know, it is who you know and I don’t know anyone.
It really hurts me to see when other people who are dying get to have their wishes fulfilled and I can’t. I have written to celebrities who I would love to meet such as Kim and Kourtney Kardashian and Scott Disick, Ellen DeGeneres, Kelly Ripa, etc. and I never got a response. Yet, I see the exact celebrities responding to the requests of others and it pains me. I also wish for my family to go on a family vacation someplace because we have not gone on a ‘family’ vacation in 8 years. We have no money and we could all use some fun time and time spent together without having to deal with ‘sickness.’ We really have gone through a lot and I know I don’t have much time left. I would love to spend some time just having ‘fun’ with my family before that time comes. It would mean so much if I could go to Disneyworld, Hawaii, going to Hollywood to see all the actors and actresses, or go to Atlantis with them and just spend some ‘fun’ time with them before I die.
I just don’t know what it takes to get noticed!! I just wish there was a way for my dreams to be acknowledged. I wish there was a way for the media to find me and to pick up my story so that my story can receive the attention that I see others getting on TV and in magazines. Like I said before… I am really deteriorating and going to die soon. I really need treatment in order to get that chance of living and it is so unfair that without money to pay for it, it is not possible. I always wonder what this world would be like if money didn’t exist.
Tonight I watched the Nik Wallenda walk the tightrope over the Little Colorado River Gorge in Arizona. Wallenda performed the stunt on a 2-inch-thick steel cable, 1,500 feet (457 meters) above the river without wearing a harness. He showed me that anything is possible and NEVER GIVE UP. So even though I am still having all these problems with coming up with money for treatment and achieving my dreams, I am still trying to push on. I am not throwing in the towel yet.
I am sorry if this blog is a little of a ‘rant’ but I just had to vent and let out how I was feeling and how I don’t understand that no matter what I do… I just can’t get the help that I need. I hope you don’t mind me saying all this. It just hurts me when I see others in the world get help and get their wishes granted, but I cant. I try so hard to get attention so that I can receive the very lifesaving treatment I require, but nothing ever seems to work. It really hurts. I also would love to get my wishes granted before it is too late because I really could use some happy things in my life because so far my life is just so miserable. I just want something ‘good’ to happen before I die and to have some happy memories instead of just being filled with all these torturous ones of this horrendous illness. I hope you can understand.
Well it is just another night awake. It has been worse than ever lately. I don’t know why. I know that I had the accident in May, but ever since then this disease has just taken off. My autonomic dysfunction is totally out-of-control and I just can’t seem to sleep at all. The pain is just so unbearable and I keep getting hot flashes that I keep blistering from because I can’t sweat. The nights are the worst and I can’t even have anything touch my skin like the blanket or pajama pants. My entire body feels on fire that I literally have to roll up my pants and sleeves as high as they go so that nothing touches my body. It is like a double edge sword though because not only can I not take things touching my skin, but I also can’t stand the air touching my skin, as the air touching my skin hurts. I also hurt just laying down on sheets. I just wish someone would knock me out and put me out of my misery already.
I am continuing to get horrible spasms in my blood vessels and muscles of the extremities. When they occur it feels like your muscles are crushing your bones. But the worse part is that they cannot be rubbed out or touched at the time they occur.
Well… I guess I wrote enough. Today was a beautiful day outside but I of course wasn’t able to enjoy it. I can’t go outside because of the temperature and the sun. I am so hypersensitive that the sun literally burns me. If it isn’t like the perfect temperature for me, I can’t go out because I can’t regulate my body temperature since I have autonomic dysfunction. If I went out, I would not only ‘fry’ but I would start up my entire disease and autonomic dysfunction. I would end up blistering and such because I wouldn’t be able to cool down since I can’t sweat or anything.
Even though I couldn’t go out, my dad was doing some work outside and I watched from the sliding doors. My dad showed me a squirrel that crept under the door to see me. It was a little baby and really cute.
I also have found blood in my ears. We aren’t quite sure what the blood is due to. When I spoke to the doctor today the doctor said it could be due to all the traveling I have been doing lately. My disease makes me extremely sensitive to especially noise and changes in pressure. So it could have caused something in my ear to rupture or something. We have to keep an eye on it.
Well… hope all is well with you. Trying to keep positive. Keep your prayers going for me. I will keep you posted.