Making a difference in the world… that is what I really wanted to do with my life. It was my goal in life to leave an everlasting mark on the world. You know the quote that states, “Some people come into our lives and quickly go. Some stay for a while, leave footprints on our hearts, and we are never ever the same”? Well… I still want to achieve that goal even if it wasn’t the way I originally intended it to be.
However, I really need your help if I am going to get better. I am really not doing well though to be honest. I am jovial and spunky who is trying my hardest to keep up a happy demeanor, but it is definitely not easy during this long journey. We are just hoping that I will be able to make it to Cali because things have gotten really bad. We are really short on funds and without the money… we don’t know if we are going to be able to go. Everything is booked and ready to go… it is just a matter of hopefully coming up with the money to pay for it. It really stinks to know that there is a treatment out there and you can’t get it because you just can’t afford it. It is like when you tease a dog with a bone by wagging it in front of its face and then you don’t give him the bone after all that. The hard part, and we are not the type of people to ever express personal family matters or ask for help from friends and/or strangers, is that financially we are not able to afford the cost of traveling to and from New York to California, nor are we able the current medications or treatments that I need here in New York. We don’t even know how we are going to afford all these medical bills, which is another expense entirely. We are out of our minds with worry and do not know how we are going to make this all happen financially.
Medical bills are piling up. I need so many medications and unfortunately we can’t even afford to get them. Very few are covered under insurance and the ones that are still have extremely high copayments. The others are not even covered by insurance… so it is completely out-of-pocket.
We are in desperate needs of help. We are asking for ANYTHING that anyone can do to help out. Please, we are begging for assistance. Please help us in raising funds. Share with your friends and family on Facebook! Send a link to this site in an email! Any little bit helps.
Of course prayers are also needed. As I am continuing to worsen, I am really asking to be added to your individual prayer lists and any other church or group prayer lists you may know of. Even if you can’t afford to donate, we welcome your prayers!
I am just continuing to worsen. I am getting severe edema in my legs and even when I spend the nights with my legs elevated, it doesn’t make it better. My heart just isn’t functioning as sufficiently as it should be. My heart rate and blood pressure are continuing to drop. I am getting weaker by the day. When I breathe I can feel and you can hear gurgling in my lungs. I am so thirsty and yet, each time I drink I end up drowning more and more in my own fluids. My poor little fragile body can’t take the vomiting anymore and I barely can eat anything anymore. Even the littlest things such as ice cream and egg whites and my ice pops are getting to be extremely difficult to get down.
My weight continues to dwindle, which is something I cannot afford. When you weigh in the 60s, even losing an ounce is a major deal. The doctors told me already that I am not allowed to have any fat or sugar in my diet. My body cannot handle it anymore and will only make the gastroparesis and neurological disease wore.
My legs are so swollen and they are red like fire. It even gets to the point that I can’t even wear pants on my legs because the burning is so intense. It is like I have gasoline poured all over my body and I am on fire. I am also constantly feeling like I am getting spasms and knots throughout my entire body. The cramps that I get in my feet are so intense that I just want to scream. They are the ones that you want to jump out of bed and walk on because you can actually see your limbs twist and contorting in all different directions.
The autonomic dysfunction is just completely horrendous and out of control. The slightest touch is so painful and the slightest change in temperature is wreaking havoc on me. So you can just imagine how horrible I am feeling with the weather being the way it is.
I am so very weak. I barely can get off the couch during the day. I spend the entire day on the couch resting for a good 1-2 hours to be up with my family. Then after those 1-2 hours, I suffer even more for it because I exacerbated my illness. I can’t go to the bathroom and I am so blocked up. Even walking to the actual bathroom when I do have to go is getting to be too much to bear. I really need help and help badly. I really need to get to Mexico.
I can’t remember the last time I slept at night. I spend the nights in pain and there is not enough medication that I can take to even dull the pain even a tiny bit. Thank goodness I have Missy, my cat! She is my little babysitter and buddy. We spend all night together. In fact, I actually taught her how to talk because whenever she comes into the room she announces that she has arrived by actually “talking.” It really is something. Even when she comes into the room and I say “Hi Missy”… she actually talks back!! Missy is really some great cat!!
In the meantime since we cannot afford my miracle trip to Mexico, I have to undergo the next best thing and have to buy time and therefore, we have to head to California. We are leaving for California hopefully on Father’s Day to have all the presurgical testing and all the exploratory surgery to figure out exactly what is the best way about going through with the surgery. Another huge trip that is going to take a great toll on a tired, frail, and exhausted body. However, we really need to buy time til then and therefore, the doctors have me going for surgery every Friday to get as much mucous and stool and other stuff out of my GI tract because I cannot get them out on my own. My colon is officially dead and needs to be removed and therefore, whatever goes into my body and is not vomited will end up “rotting” and “fermenting,” which can lead to further problems. So it really is essential to have this surgery done because we can’t afford for my intestines to perforate or rupture. As it is, the colon is extremely dilated and there is so much pressure on my organs already (especially in the pelvic region) that they are shutting down.
Originally, we were going to hold off the surgery and go for the ketamine coma/infusion instead, but since the doctor said I was so bad during the surgery last week, we decided to have the surgery again tomorrow and put off the ketamine for Tuesday or Wednesday. I desperately need some housekeeping on my GI tract, as I need to be vacuumed and suctioned out. It is so very bad inside because of the gastroparesis and the doctors are very worried that I am going to perforate something or go into sepsis.
When I had the surgery done last week, it was so bad inside that the doctor was thinking about admitting me into the hospital and leaving a tube inside 24/7. However, after careful consideration, the doctors decided against this because the hospitals here really aren’t equipped to handle my case and they are so afraid that the nurses and doctors are going to make my illness and condition worse because they are unfamiliar with me. After all, I am extremely hypersensitive and can’t be treated like a regular patient. In addition, I am extremely weak and fragile and therefore, the doctors don’t want to also risk me picking something up in the hospital because that is the prime location to pick up an infection.
Yet, the doctors are thinking that there is a further obstruction in the intestines that they aren’t seeing. The doctors are prevented from seeing it because I have too much “smutz” inside. They are also afraid to blow me up with air too much because I can’t expel it. In order to see higher up in the colon, they would have to blow it up even more, which is not good considering my circumstances. But after the week that I have had… they are going to try to do some more Friday.
So it looks like tomorrow will be another day of Surgery. One day I won’t have to worry about going for surgery. One day I will be able to say TGIF and it will really mean something to me because Fridays and the weekends are supposed to be filled with FUN!! At least when I do go for surgery here at Mount Sinai, they all know me there already since I have surgery every week. They know how to treat me and when to start the IVs and how to handle me because like I said before, I can’t be treated like a typical patient. It is good that they know all this because it can be really exhausting “standing guard” so that no one touches me or bumps into me because the slightest touch is extremely painful or having to keep explaining to them about my disease and condition and the nature of it. It is even exhausting having to reassure them that “everything is ok” when the monitors show differently because my blood pressure is so very low and the pulse ox is low too that that the machines are literally going off stating that I am in an “emergency” state.
I never thought that my life was going to turn out the way it is now. I was such a happy child and wanted to make such a difference in the world. I don’t know what I did to deserve this horrendous disease and I don’t know why I continue to suffer from it. But I do know something… I still want to make a difference in the world and leave an everlasting mark in the world. After all… Life is not about the steps you have taken but the footprints that you have left behind.
In addition, Even though tonight I happened to be in a lot of pain (which is no different from my usual self), I was very entertained by a YouTube video of a concert that the music department put on. As I laid in bed watching the Middle School Orchestra perform their spring concert, I kept remembering the days when I was able to play the violin and when I was actually able to perform in concerts too. It took me back to the times when I was in middle school and high school… when I was the one on stage performing in the orchestra. I remember how well I used to play the violin and how happy I was. I remember how I used to be Concert Mistress and how I even received a perfect score on the highest level at NYSSMA. As I watched the concert perform tonight, I couldn’t help but remember my past and wonder where all my ‘happy’ times went. What I would do to be able to turn back the hands of time and to go back. I long for those days when I was in school, playing the violin, being a competitive figure skater, having fun, having friends. Who would have ever thought that I would end up the way that I am now? Who would have thought that would have ended up having that all taken away from me, as I no longer can play the violin, skate, have fun, and even have lost all those wonderful and dear friends?
In fact, tonight when I told my dad how much I miss the younger years and when I played the violin, my dad said to me that I better get back to playing the violin because after all we still have it here waiting for me. Me playing the violin was the only thing that used to put my dad to sleep. He loved when I would play it.
One of the worst parts of this illness is that it really takes over my memory as well. I don’t remember all that has happened to me in the past. It really is horrible because I have a hard time remembering all the pleasurable things that I once did. Many times when my parents reminisce about past activities, it is like I am hearing about it for the first time because I can’t remember them. I guess that is a good thing that I have always been a photo crazy person because at least I have plenty of photos to look at. And to think… people used to make fun of me because I would take so many photos. It pays off now. I just wish I could remember all the good times that I had could be remembered. Sometimes I wonder if it is the disease or the drugs that I am on. Sometimes I wonder when I am “cured” if it will all come back. In fact, a great fear of mine is that none of this stuff that I have lost will ever come back. But just as I am hoping that I will be helped and cured… I am hoping and praying that all will come back as well.
Footprints… They tell you where you have been, but not where you are going to go. So as I continue to remember my past, I am even more determined to follow my dream, which is to make a difference in the world. I don’t know if I will be able to make a huge difference in my own life, but if I can help someone else… then I really accomplished a lot. Maybe my blogs will help someone understand my illness, maybe someone else going through my illness will read these blogs and feel that they are not alone, maybe my perseverance will show others that you can do anything that you put your mind to. But I really do truly want to make a mark in the world before I leave. All my life I wanted to be a doctor so that I could help others. However, being afflicted with this illness has really complicated that goal and it might even prevent me from achieving it. Yet, even though I may never become that doctor that I always dreamed that I would be and make a mark in society in that aspect, maybe I can still make that difference that I so want to make!!
Lao Tzu once said, “The journey of a thousand miles begins with one step.” As I lay here suffering from this horrendous and most painful condition that can exist, I am determined not only to help others understand this horrible illness, but I am also determined to help others who are afflicted with this illness to maybe get some relief or better be able to ‘cope’ with having it. If I can prevent someone from suffering the fate that I have been suffering… then I have really achieved more than I could ever have hoped for.
I have been really trying to figure this illness out. Being unable to do anything and isolated because I am so hypersensitive to everything… it gives you a lot of time to be by yourself and think. So I thought that I would try to see if I could come up with an “answer” to this illness and maybe try to understand it better so that doctors can cure it. So… I have been doing a little research here and there that I wasn’t going to share until I got enough evidence that what I had could be “something!” After all the research that I have done and from even experimenting on myself… I think my theory is kinda right and therefore, I think it is time to bring to light some of my thoughts. I don’t know if I am right in all my thoughts so I don’t want people to go running and thinking that I am making claims on things. Let me reiterate that these are just my thinking.
When I did my research, I saw that this disease really was genetically based. It was genetically based because the people that got it really for the most part were very quite similar in genetics. I am not a geneticist so I don’t know the real fundamentals, but I do know how easily “stressed” these people are and how the people that get this illness all tended to be perfectionists and high strung. All these people were great achievers who went beyond the call of duty to do something if asked. So already I saw how this illness affected certain people and not others and why certain people were prone to it.
This disease is a disease of the nervous system. It is a disease of the sympathetic nervous system, which is one of three major parts of the autonomic nervous system (the others being the enteric and parasympathetic systems). Its general action is to mobilize the body’s nervous system fight-or-flight response. It is, however, constantly active at a basic level to maintain homeostasis. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain. So essentially when you get this disease anything that relies on this nervous system is afflicted and that is why your entire body goes haywire.
When people are afflicted with this disease, the fight-or-fight response kicks into overdrive and never shuts off. As a result, everything in the body that relies on the nervous system and that gets affected and stimulated when the fight-or-fight response goes into gear gets affected and this, the homeostasis is then thrown off in the body causing all the other illnesses such as gastroparesis.
As you have seen with me, this disease is extremely painful and life-threatening because it causes havoc on the entire body. It shuts down organs, and wrecks the homeostasis in the body, which is so essential for a body to have in order for it to survive. However, there is no known cure at this time.
Yet, I think I might have found an answer. In order to cure this illness, you have to basically shut down the nervous system. All the nerves are being stimulated in the “fight-or-flight” response and unless you find a way of shutting them off, there is never going to be a cure from this illness or the other illnesses that are associated with it such as the gastroparesis. Essentially… if you cure the autonomic dysfunction… you cure the gastroparesis and everything else.
The first line of treatment is nerve blocks. Nerve blocks are given to patients when they are first diagnosed because the disease usually is confined to one particular area. After the nerve blocks are done, a patient usually feels better because it “puts the nerves to sleep.” Yet, these nerves blocks are only temporarily. People stop them because they start to feel better and such, which only leads to progression of the disease because like I said before the blocks are only temporarily. Yet, if people continued to get doses of nerve blocks and flooded the area with anesthesia to put the nerves to sleep and essentially to “rest”… then I really feel that after a sufficient amount of times… they will stay asleep forever.
Yet, for people like me who have it everywhere and have other issues as well such as the extreme gastroparesis, there needs to be a more intensive procedure. That is why ketamine needs to be used. This is the reason why I need to get to Mexico so badly. Ketamine is an NMDA receptor that can put the nerves to sleep and reboot the body. However, the amount of ketamine that the body needs in order for this to happen is astronomical and cannot be given in a single dose or even in a dose that is FDA approved. That is why the ketamine coma in Mexico is the right way to go.
Only by going to Mexico to get the full ketamine coma will patients that are suffering as bad as me can be helped. It is only Mexico that will be able to give enough ketamine that will shut down the nervous system and reboot it. It will receive enough anesthesia during this time to officially “quiet” the body down and stay that way for a longer period of time because in Mexico you are given the ketamine in such a high dose around the clock for about 2 weeks. It is at such a high rate that you need to be fully intubated and totally on machines because your whole entire body is essentially in a “coma.” Only by giving your body this significant amount of time of REST will the nerves quiet down and you will be cured of this illness. Of course boosters are going to be needed afterwards every so often so that the nerves don’t reawaken.
By quieting the nerves down, I truly believe that a person can be cured. Anything that stirs up the inflammatory process (i.e. caffeine, processed foods, stress, etc.) is no good because it only adds to the nerves already being on edge. So… I truly believe if you cure the autonomic dysfunction, you will cure this whole entire problem including the gastroparesis too, which would enable me to eat everything again.
I know that what I say is true as well because I do know that when I am stressed more than usual or aggravated or have anything that might “inflame” my body, my illness is worse. I will bloat more, the pain will be worse, the gastroparesis will be worse; I won’t be able to have any mucous pass, etc. However, if I am totally tranquil and there are no stresses that I have in my life, it is much better and there can be a huge difference seen.
Could I be onto something? I don’t know. There is more to this also, but I am still working out the kinks. I don’t know exactly if what I even wrote is readable or understandable. But maybe one day when I finally get everything organized and situated… I will be able to have it published. I just wanted to share a little of this info with you now.
Well… I guess that is about it. I am reading a new book called “The Cuckoo’s Calling” by J.K. Rowling. She wrote this under a different name. I loved the “Harry Potter” books and therefore, I decided to read this one too. She is coming out with the following book in June (I think) and therefore I want to definitely read that one too.
Well… now that the summer is here “America Got Talent” is back on TV. So of course I will be back to watching that show. One of my best friends happened to get me an autographed shirt from Howie Mandell, Heidi Klum, Howard Stern, and Mel B.
Thank you again for all your help. Any donation of any amount is much needed and so appreciated.