Just wanted to write a little update as to what is going on since I kinda have a lot going on at one time. Plus… I am literally climbing the walls in pain tonight, so I am trying to keep my mind busy and off the pain.
I know that I wrote yesterday and told you a lot of stuff that was going on. Well… like always, more stuff has happened today. Gosh… never a dull moment in my life. My life is like a “soap opera” because there is something always going on. I think that if I said that my life had absolutely nothing going on… then there would definitely be something to worry about.
I also can’t sleep, which is not out of the normal. Unlike “normal” people, people afflicted with my illness are prone to insomnia and do not reach REM sleep; this is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is often physically painful to actually get up and out of bed. So, why don’t we sleep? It is because our illness causes changes to the Limbic System of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.
I just want you to know that when I write these updates. It is not just to receive “pity.” I write these updates because I need help and because the alternative is to sit and do nothing, letting my body get worse and my mind waste away. Unfortunately, many people see me when I am “out” as “normal” because my pain is invisible. What they can’t see is the pain, mental and physical, I am pushing down just to be “out” as well as the price we will be paying later that day and night. Please understand that I am not playing a pity card. I am just trying to share what a day is like, as well as a way of hoping that someone might be able to reach out and help me.
Things are getting horrendous here. I really need a MIRACLE and a MIRACLE soon. I really don’t know how much I am going to be able to last anymore. You know things are bad when I am contemplating going to the hospital because you know that I never do that. I absolutely HATE hospitals. I am petrified of them. I know it sounds strange considering the fact that I have been in them so many times, but I just can’t stand them. I used to be able to tolerate them and they didn’t bother me at all. However, the more that I am in them, the more scared I am of them. I literally shake when I have to go to them. I really don’t want to be admitted because I know that I don’t have that much time left and I don’t want to spend my remaining time in the hospital.
I know that once a hospital gets their hands on me, it isn’t going to be so easy to leave. I have so many things wrong with me and therefore, I know that if I go to the hospital… they are going to admit me automatically. I mean…. Who wouldn’t? I am underweight because I weigh only in the 60s, I can’t really keep nutrition in me, I am in organ failure, I am bleeding internally, I have organ failure, I have aspirations in my lungs, etc. There is so much wrong with me that no good doctor would be able to release me. Plus… I know honestly that there really isn’t anything the doctors can really do for me, especially at the hospitals in the New York area. If anything, I would have to go to a hospital that is able to deal with my complex medical condition, which is in California or Indiana or something. There are only like 6 hospitals in the country really capable of dealing with my condition, as there are only 6 hospitals in the country able to do my transplant. Therefore, it isn’t really like I would benefit being admitted in the New York area anyway because they wouldn’t be able to “help” me so much anyway. But… just because they can’t…. it doesn’t mean that they won’t try and it doesn’t mean that they won’t keep me. They won’t release me so easily because they know that if they do, I probably will only die.
I probably will die no matter where I am… whether I am in the hospital or at home…. Especially if I am in the hospital in the New York area since they aren’t able to deal with me. Therefore, since I am rapidly deteriorating that time is of the essence, I really don’t want to spend whatever time I have left in a hospital. I really want to spend it at home with my family and enjoying whatever time I have left. You know?
So… for me to actually be contemplating going to the hospital, I really have to be in BAD shape. Nothing I have done tonight is making a difference in the pain. I am literally climbing the walls. I have maxed out on all my meds and nothing is helping. I am literally screaming in agony. It has been one bad night overall. It just continues to get worse and worse.
I take so many medications pills that you think it would make a difference in the pain and such. However, all I do is continue to suffer. I take over 50 pills a day, which include morphine, methadone, dilaudid, nucynta, etc. and yet… I am still in horrendous pain. If I am in this much pain with all these drugs, I don’t want to imagine what my life would be without them. I always make a joke calling my self a “druggie,” but contrary to some people’s opinions taking a pile of medications does not make me a “”druggie.” A druggie may be someone’s idea of a person who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who probably cannot fathom someone who takes narcotics for “fun and/or recreation!”
I can’t start my day without medications, which is the first of taking them many times throughout the day. To “look fine” I take over 50 pills. There are the side effects of those medications to deal with; upset stomach, drowsiness, constipation, headaches, and many others. Understand that these pills do not take all of the pain away. They just enable me to get up, move around, and have some semblance of a “normal” life; they simply allow me to function.
I also had a really bad attack tonight. The days and nights are getting worse and worse and the really bad attacks, which is when my stomach really acts up with debilitating pain and such that all I can do is basically curl up in a ball on the couch and cry and hope that it passes is getting more frequent and worse as time passes. I had a really bad attack tonight right at dinnertime, which forced me to miss dinner. I couldn’t even sit at the dinner table with my family. All I could do was lay on the couch and cry.
No one really had a good dinner tonight because they were so very worried about me. You know things are bad when my brother actually misses dinner and stays with me on the couch as well. He said I looked “so bad and like a cat curled up in a ball.” He was really nervous. All he wanted to do was rub my back and touch me, but I just didn’t want to be touched. It hurt way to bad and with my hypersensitivity to pain, I just can’t be touched. I hurt all over and everything is magnified for me. Even the lightest touch sends me screaming because of the pain being so intense for me. It must stink for my family to have to sit back and watch and know that their hands are tied because they can’t do anything… not even rub my back or anything because anything that they would do only worsens the pain. I know it stinks for me because I would do anything for them to be able to hold me and hug me and for them to be able to tell me “everything is going to be ok.” But… due to my illnesses, I cannot have that happen because I am so hypersensitive that the slightest touch is so incredibly painful to me. Plus… whenever I get an attack, my autonomic dysfunction really starts up and therefore, I have trouble breathing, I get really hot and I cannot sweat to cool down, I get prickly, etc. I get so uncomfortable and nothing really helps. So when they touch me, it only worsens things because it is as if they are “smothering” me. It is so unfair that the slightest touch, even the caress of a loved one, the kiss rom a family member, etc. will send me up the walls in pain.
I have severe allodynia. Allodynia is when even the lightest touches or sounds cause extreme pain. Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain. Yet, to someone like me, they can!! Even a light breeze causes excruciating pain.
My brother was so scared. Not only did he sit on the couch. But all he could do was just stare at me and try to make me feel better by talking to me. I know he only meant well by trying to “talk” to me, but I was in so much pain that I didn’t want to be bothered. The pain was so intense that I was in no mood to talk at all. My brother gets so scared that he is going to lose me and he hasn’t been handling the situation well that I am rapidly deteriorating and that he is literally “watching” me die. He just sat there on the couch telling me “how much he loved me” and he kept making sure that I knew it. My brother is really too kind.
I just wish that I could make it better for my family because they don’t deserve all of this. They have literally had to give up so much for me. Their whole entire lives had to change because of me. Due to my illness, we can’t do many things. For one thing, we can’t really do any “activities” as a family and have fun. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole days activities. It is just too much for me! Because of this disease, we had to change our whole way of thinking to include doing things in moderation. We can only do things in the morning when I am at my strongest and my pain is at its lowest. Plus, we always have to work around my appointments, which are so frequent. We used to be one happy family. Now even laughter in the house is a distant memory. This is not the life I ever expected.
Another strange symptom that has to be factored into my daily life is that vibrations and noise bother me; it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain. Due to the noise and vibrations causing me extra pain, for instance, there are a lot of things I cannot do and places I cannot go. These are places most people take for granted and may wonder why we are not there. They may think we are shutting ourselves off by not going, such as going out with friends, but if there are a lot of people making noise, even if it is simply singing or clapping, a baby crying, it can cause my pain to spike. Visits sometimes have to be cut short due to all the regular noise that is typically generated.
Well… I guess I should tell you the latest as to what is going on. I spoke to the doctors today and things are getting set. I am supposed to be leaving in 15 days for Indiana for the transplant. Even though we didn’t know what to do first, which was to either go for the transplant or the ketamine coma out of the country, we decided to go with this plan because even if I went with the ketamine coma out of the country, there is no guarantee that it would CURE me. Plus… things are getting so horrendous that unless I get a transplant and a transplant soon, I am going to die. Ideally I need both but it is like… what do we do first? It is like the same as “Which came first… the chicken or the egg?”
Since I really need a multivisceral transplant, which is getting a new small and large intestine, stomach, pancreas, and liver, we are headed to Indiana on January 20th. Hopefully I won’t have to wait long after to receive the organs because I don’t know how much longer I have with the organs that I have currently. When we look at me now and how I been having these painful attacks and such… we know how desperately we are running out of time!!
On February 3rd, we are then heading to California for the ketamine coma. My entire team is there in California even though my transplant team is in Indiana. So, I am going to be headed to California at that time for the workup for the ketamine coma since they can’t just put me into a heavily induced coma. Even though I have been getting ketamine comas in New York, they are not nearly as intense as the one I will be receiving in California. The one in California will be for about 10 days or so in duration and around the clock. The amount of ketamine I will be receiving will probably be enough to kill a horse. I will need close monitoring because it is very dangerous. Hopefully the ketamine will do something for the pain and help my nervous system to a point because this is our only shot at this point. We are hoping that this ketamine coma will keep me going til the transplant.
The doctors in California will not give me the ziconotide in the pump. Like I said before the ziconotide is developed from marine life. It is a synthesized peptide component of a neurotoxin secreted by the cone shell snail, Conus magus, which is thought to work by preventing the release of neurotransmitters involved in the transmission of pain at the spinal cord level. However, since it did need the pump to be administered, I cannot receive it. There is no way that the surgeons will be able to place a pump in me due to how small I am and how poor my health is. They are too worried about the complications that would arise from the pump because when you are as thin as me and undernourished, I have a dearth of soft tissue mass to cover a subcutaneously implanted pump. However, they did say that they would give me an injection of the ziconotide to see if it did indeed wok on me. They said that at least we will find out if it had the “potential” to work or not and if we knew at a later time if a pump was an option.
So… things are really going to be hectic in the next few weeks. I gotta keep up my strength because there is going to be so much traveling and stuff going on that it usually knocks me out when I travel as it is… let alone when I am as sick as I am now. I honestly don’t know how we are going to manage to do all this considering how much money this is all going to cost and how much time dad is going to have to take away from work. However, it is at the point that we have no other choice. If we don’t do this now… I am going to DIE.
So… even though we really don’t know how we are going to manage to do all this or how we are going to afford this all, I am really hoping that something will come about that will help me raise funds or something because I don’t want to die. I know it is going to be impossible to raise enough money to cover EVERYTHING, but I desperately need something. I will take as much as I can get because even a dollar makes a difference. I am really hoping that the media might do my story or that more people might get whim of my situation by seeing my posters, messages on Facebook, website, etc. and be able to donate. So… if you can do anything to facilitate this, I would really appreciate it. You can’t imagine how desperate I am and how thankful I would be for anything that you would be able to do. My life basically rests in the hands of others because I can’t live without these treatments and these treatments are so dependent on money… something that I really don’t have.
In addition, I need a private plane to take me to Indiana when the transplant becomes available. Usually, the surgeons make the patients move to within 4 hours of Indiana because when the organs become available, the patients have to get to the hospital in a timely matter. However, the surgeons were willing for me to remain at home and wait for the transplant because they knew how hard it was for my dad and I to live there as long as we had a private plane to take us to Indiana when the organs became available. We had to have everything planned out carefully when we meet with them on the 20th because they didn’t want us figuring it out last minute because these are organs that we are playing around with… something that is too special and too important.
So… in order for me to take a private plane to Indiana, it really would cost like $14,000. I really don’t have the funds for that. I am trying to talk to a company that might be able to help. I am still awaiting to hear back from them, but I am hoping that they will be able to help. I need to find a place that will be able to take me in an minutes notice, as well as a place that will hopefully do it for as little as possible because I can’t really afford to spend a lot on the plane because we don’t have the money to do so. But like I said… I contacted a flight company and waiting to hear back from them. I am going to try to call them again tomorrow because they were supposed to call me back today and I never heard from them.
Well… I guess that appears to be everything. I just wanted to bring you up to the latest info. I am all booked for both trips. It is going to be a long next couple of weeks for me. My brother is very nervous for me because he knows that MARCH is not far away and he is scared of that month. He is scared that I am going to have the transplant or ketamine coma that month because he knows that MARCH hasn’t been a good month for me at all. Every year something has happened in March to me that landed me in the hospital fighting for my life. In fact, when I was on the phone with the doctor tonight, my brother overheard the plans and actually went over to my mom because he was so concerned that this was going to happen in March and something horrible was going to happen. He doesn’t want me to have the transplant or coma or anything else in March because he thinks I am going to die from it definitely if I have it at that time. My parents and I told him not to worry, but he still is. It is quite funny (I have to admit) that something happens every March that leaves me in the hospital fighting for my life. But hopefully this year will be different.
Well… I guess I will be going. I am in too much pain to keep writing. I just wanted to let you know the latest. When I get more news… I will write again. Again… it is people like you that get keep me going. Just like medications, it is my “friends” and “family” who get me through each day. The value of none of these things can be minimized. Not just for the physiological changes that they bring to my body but for the psychological ones as well.