Well… I had an appointment with the Osteonecrosis surgeon today. I had an appointment in a few weeks actually, but since I have been getting worse than ever with the Osteonecrosis and feeling worse than ever with it, they were rushing me in. However, when I was going today to the surgeon at the hospital, I never even thought that it would end up with me having emergency surgery. Boy was I in for a surprise!!
Not only have I been feeling worse in my overall condition in terms of my neurological condition, autonomic dysfunction, and gastroparesis, but my osteonecrosis has also been worsening as well. I have been in tremendous pain lately… even more pain than ever, if that is at all possible. I am literally climbing the walls and it is even more unbearable because the doctors are trying to take me off the meds because they said that it won’t work ‘well’ with that very intensive ketamine coma that I am supposed to be receiving as soon as I am off all those ‘necessary’ medications. However, coming off those medications have been literally ‘hell!’ I have been having the worse case of withdrawal and not only is it affecting my neurological disease, but it is affecting my other co-morbidities.
It has honestly gotten so bad that I can’t take it anymore. I honestly don’t know how I am going to manage to get off ALL the necessary medications because I don’t think I am going to be able to cut back anymore than I have done already, which is a lot already. There have been so many nights that my dad just wants to take me to the hospital because it has really aggravated my other co-morbidities big time especially my autonomic dysfunction, which is the last thing I want to aggravate. When you aggravate that… it is the absolute WORSE. In fact, I have even had to increase the dose again because the pain and other symptoms have gotten so incredibly bad that I just can’t take it anymore. I am not planning on going back on all the meds because I know that I need to come off of them for the ketamine, but I am going to talk to the doctor and tell him that something definitely has to be done because this pain is ludicrous. There has to be an answer to this. I am only hoping that after all this ‘coming off the meds’ that it is even worth it and that the doctor is right in his thinking that it does indeed interfere with the ketamine because no doctor knows for sure if or if it does not interfere with it. Each doctor has his own opinion and unfortunately the doctor who is doing the more intensive ketamine coma has the thinking that it does. When I go for the less intensive ketamine every other week in New York, the doctor allows me to remain on all my other medications and doesn’t believe that it interferes at all. So we don’t know who is right. It is all too new and uncharted waters to know.
In the meantime though… like I said… things are just continuing to deteriorate. I am in such severe pain, my stomach is out of control as well as the autonomic dysfunction, and the osteonecrosis has been killing me. My dad constantly wants to take me to the hospital, but I am trying to hold out because there really isn’t any hospitals around here that I can go to because they don’t have the ability to help me and therefore, I would have to travel in order to go to the nearest hospital. If I had to go to the hospital, I would have to travel to Maryland because John Hopkins would be the nearest hospital that could probably be able to handle me due to all my complications and such. I was already told numerous times by the local hospitals, which happen to be extremely good, that they wouldn’t be able to really handle me and treat me if I was to show up there. They said that they would try to ‘stabilize’ me, but then they would have to send me off. They said they don’t really have the capacities to handle me because I am so complicated and really don’t know what to do. Ideally, the best place for me is someplace like Stanford in California or Mayo Clinic in Minnesota because they can handle my overall condition along with the ketamine. John Hopkins Medical Center is really the closest hospital that I can go to, which is like 6 hours away, so its quite a distance.
In addition, I really don’t want to be hospitalized because something tells me that if I am hospitalized, I will only worsen. Even when I am extremely ill, the doctors like to keep me out of the hospital because since I am so very sick and weak and also have no immune system really, the hospital is really the last place they want me because I will catch something there and it will really worsen me even more. I can’t even afford to catch a thing because everything is magnified for me because of how hypersensitive I am. The simplest thing can literally kill me. I can’t even get an IV put in me without causing problems. Not only can the stick cause mega and excruciating pain, as well as give me the potential of spreading the illness, but it causes me even more pain because the fluid itself is excruciating painful. I am so hypersensitive that the slightest fluid running through the IV will send me through the roof. There are so many times that they have to knock me out or they can’t start the IV until I am in that ketamine coma or under anesthesia because of how painful and uncomfortable it is. In addition, I can’t really be treated like a ‘normal’ patient and nurses and doctors don’t always know how to treat me.
It is better to be at home because I can do whatever I need to do whenever I need to do it. When I am in the hospital, I have to wait for nurses to do it. In addition, when I am home, I am in control of my environment to make it as comfortable for me as possible. For example, the slightest deviation from that perfect temperature will cause even more pain. When you are in the hospital, you are not so much in control. You have to deal with whatever temperature there is and you have to wait for pain meds instead of being able to get your own whenever you need it. So, as you can see being in the hospital isn’t such a great and wonderful experience when you have my illness.
I have been hanging in there hoping that things will turnaround, but unfortunately they are only worsening. I am also hanging on because I don’t want to be hospitalized because I know that I have so many upcoming events planned and if I go to the hospital, I don’t know if they will be able to occur. I am supposed to be seeing top specialists for my GI tract at John Hopkins in the beginning of July followed by many surgeries in California to help ‘buy’ me time until I get the coma. I am also rapidly deteriorating and we definitely need something to hopefully ‘buy’ us time. The doctors have already said that if something isn’t done soon, I am not going to make it. So I can’t really have anything interfere with these appointments because they are so very important. The doctors didn’t even have openings, but they are pushing me in and making exceptions for me. So… I can’t have anything jeopardize them because I may not make it for a future appointment. You know?
I love going to this hospital though to see this surgeon because it is such a wonderful hospital to go to. The surgeon happens to be in the Cohen Children’s Hospital, which is one of the top hospitals in the country. Even though I am considered an ‘adult,’ I am so fortunate that he is still willing and able to see me. It is one of the nicest hospitals. It is amazing the different feel you get from a hospital when it is a ‘pediatric’ hospital. The entire atmosphere is different. Everyone from valet, security, nurses, doctors, staff, etc. are so incredibly friendly and it really makes a huge difference. I have been there so many times that everyone knows me there including the valet people, which gives me the extra comfort.
I have the best surgeon for the Osteonecrosis. Not only is he a surgeon, but he is also a pathologist that I very well respected in the medical world. Who could think of a better surgeon to have for osteonecrosis than him then because when you are dealing with osteonecrosis… you are dealing with dead bone and such. At least he can personally be familiar with it and know how to test it and such and know what is going on. You know?.
I am always fascinated by how much this doctor knows. When you meet with this surgeon, he will never sit down. I don’t know why, but he stands during the whole appointment than sit. Anyway… he examines me so thoroughly and uses all this terminology with his team that it is amazing how much he knows. Sometimes I wonder if his team even knows what he is talking about because he always uses lingo that isn’t ‘everyday’ lingo. I have been to plenty of docs and even when they examine me with their teams, they still use regular medical lingo and English language. Yet… this doctor always uses medical lingo that is specialized for this condition and always is quizzing his team on it. Man do I feel sorry for his team at times because he really grills them.
When the doctor was examining me, I knew something wasn’t right from the way he was talking. I am very ‘up’ on the medical language, but I can always tell when he talk and the way he was looking that something was definitely of concern. He was also killing me with the way he was examining me, but I knew that he had to examine me. The nurses and fellows tried to give me their hands to in order to hold me down and try to take away the pain, but it didn’t really work. For some strange reason… they think that if they give you their hands to squeeze, it will somehow take away the pain.
Well… it was determined that the osteonecrosis did indeed get significantly worse. He said that he wanted to remove it because of how much worse it has gotten and such. So you know what that meant? It meant surgery. So there I went… surgery time to remove that piece of bone. They asked me for anesthesia which flavor I wanted… cherry or pina colada. Like I cared!! I told them I don’t care. I just told them to give me the ‘better’ flavor.
Unfortunately though they couldn’t really knock me out to remove the bone. It was so incredibly painful. I thought it was never going to stop. Even despite them giving me their hands to squeeze, it was so painful. I was screaming and screaming, but I thought it was never going to stop. Since I was kinda awake during this procedure, I knew something happened when the doctor changed his tone and spoke differently to the team. Of course I was right because at that point it meant that he removed the portion of bone.
The doctor removed a significant portion of bone. He is now running tests on it, which I should be getting back in the late morning tomorrow (Friday). He also told me that it will take a very long time for this to heal, as it is one of the longest things to heal from. In general, it always takes a long time to heal from this procedure, but when you have my complicated history and suffer from my illnesses, it makes it even worse. As a result, it will take even longer, if at all.
The doctors are really worried because of my overall condition in the healing process. I don’t heal like a ‘normal’ person. I also don’t have the ‘reserves’ to heal either because I am so malnourished and I don’t have the capacity to really fight off infections. When I get sores, they really never heal because with my illness the sores just don’t have the capacity to close. However, ketamine has been proven to close up the sores and it has been seen that in high enough doses, it has been seen that lesions that are wide open literally have closed up right before your very eyes. So… they are hoping that even the less intensive ketamine that I go for every other week will help in the ‘healing’ process. They are also hoping in the meantime that I don’t get an infection because I can’t fight it off at all. If I get an infection, it can literally kill me because the littlest infection is like a huge deathly infection to me and can easily lead to sepsis. Since the bone that he removed was part of my jaw, it is a prime spot to get an infection. So the doctors are really worried that it will result in one. So we are keeping out fingers crossed that it won’t and everything will be ok.
But in the meantime, I am suffering with the pain of healing on top of everything else. I don’t know why but I have not been feeling well ever since the surgery. I have been having the worst headache and nausea, but my parents think it is due to the surgery. I have been getting the worse pains in my stomach, but they have been worst than usual.
I was supposed to have a ketamine coma tomorrow (Friday), but due to the unexpected surgery, I don’t know if it will happen. I might have to postpone it until Monday. I really would like to have it tomorrow, but I don’t know if it is the best thing. The ketamine is basically the only time I get relief and a vacation from all my suffering. Even though the ketamine comas that I go for every other week is definitely not the amount that I need in order to really make a significant difference or put the illness in remission, they are still definitely worth it. I suffer 24/7 from this illness and it is nonstop. It is the absolute worst pain you can imagine. On the McGill Pain scale, my neurological disease alone is ranked a whopping 42, which is like the most painful disease to exist.
My neurological disease has the unfortunate honor of being described as being one of, if not the most painful long-term condition, scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth. Then, when you take into account all my other painful co-morbidities like my gastroparesis, osteonecrosis, etc…. it only compounds it. I am in the worst pain you can imagine.
So, at least when I go for ketamine, I finally get some relief from all these pains. I only get a brief period of relief because the amount of ketamine that I need is way too great that they can give me here in New York and during that one day. So that is why I need that more expensive coma down south. But, I still want and need the comas that I get right here in New York for the day because not only do I get an escape from all my suffering for the day, but we hope that it is delaying or slowing the spread of the illness even though it isn’t as high as I may need.
So like I said, I am supposed to undergo the ketamine tomorrow, but I don’t know if I am going to have it or if I am going to end up having it postponed until Monday. The reason is that ketamine not only gives me relief and an escape from my suffering, but it also gives me significant nausea and stomach pains as a side effect when it’s done. I am already suffering from this severe nausea and stomach pains from the surgery and I don’t honestly know if I can handle anymore. Therefore, I don’t know if I should postpone it until Monday when I am hopefully feeling better. So I really have to decide in the next few hours what to do. I just feel really bad because my dad scheduled his work already around taking off tomorrow, but he said that he completely understands and is willing to take me on Monday when I am not suffering from the additional aftereffects of the surgery today. I have the best dad in the world, but I don’t want to make his life even more difficult because I know he has a lot of work on Monday already and it is a short workweek too because of the 4th of July. I can’t believe it is July already.
Like I said though, I really need to decide in the next few hours what I am going to do. I have to really decide as soon as possible though because I have to prepare for it. I can’t just go for the coma, but I have to psychologically prepare for it and physically prepare for it because I can’t eat or drink anything prior to it, which is extremely difficult because I am always thirsty all throughout the night and drinking. I also have a snack usually during the night that my dad always gets me because the doctors say how I have to eat every couple of hours since I can’t really eat like a normal person because it doesn’t stay down and because I only weigh in the 60s and such. So, if I end up going for the ketamine, I also have to eat earlier than usual. So, I really need to decide soon because otherwise I won’t be able to even have the ketamine because you have to wait awhile after you eat or drink to have ketamine because it is dangerous to go under ketamine with a ‘full’ belly and with me you have to be even more careful than ever because nothing moves in my GI tract and therefore things remain longer than usual.
In addition, I also have to psychologically prepare myself for the ketamine. Even though it is great in the sense that it gives me relief and I look forward to that part, I get really nervous about having it because it is very dangerous too. Not only is it not an ‘everyday’ drug, but I am not in the healthiest of conditions and you never know how my body is going to react. You can’t imagine how many complications we already had during ketamine comas. Also, ketamine is extremely scary too because it gives you hallucinations. So you have to really be psychologically and emotionally prepared to undergo it because those hallucinations are extremely scary. I have the weirdest dreams that can scare you half to death such as being killed and such, and those dreams and hallucinations don’t just occur while I am getting the ketamine. Unfortunately, I will get them all throughout the day and night. As a result, I will have to have my parents wake me up all throughout the day and night tomorrow if I go because when I go for ketamine, I end up going into these sleeps that I cannot wake myself up from and I suffer from those horrible dreams and hallucinations while I am in them.
Thankfully my parents take such great care of me when I do go for the ketamine though. I have a terrific dad who goes with me and spends the entire time with me. He holds my hand and is there from the moment I go under to the moment I awake. When I first started getting the ketamine comas, they wouldn’t allow my dad into the room. Once I was under, they would make him leave. However, they realized that having my dad in the room is one of the best things to do and therefore, they have been having my dad in the room ever since. It is so much better knowing that he is there because I know that nothing bad can happen when he is there. It is so funny when he is there too because he takes his nap while I sleep too. There are plenty of times he will go “Will you go to bed already so that I can take my nap too?” At least when I go for ketamine my dad gets to sleep too because this is the only rest he gets as well. He works so very hard all the time trying to make ends meet and trying to pay the bills, so it is nice to know that he is able to get some sleep. He works like 7 days a week and 6 of those days he is awake from 3 am and out of the house by 4 am and not home until pm. It isn’t even like he has a desk job either, but he is constantly doing physical work.
I really have the best dad because not only is he with me the entire time, but he is like superman because he comes to the rescue when I am done because I am so out of it still even though I am done with the coma that he has to end up carrying me home. Even though I am technically conscious after the ketamine, I am still in la la land and not really lucid and able to walk with my crutches. As a result, my dad becomes my knight and shining armor and ends up carrying me to wherever I may go. My dad also enjoys making fun of me along with the nurses and staff at the hospital because I can do some really weird things when I come out of ketamine without realizing it. They really like to get a laugh out on me.
When I come home, I not only have my dad to take care of me, but I have my mom. My parents then end up having to wake me up periodically throughout the night because like I said before… I get into these dreams and hallucinations that I can’t awake from. Even though they are so very tired themselves, they make sure that I am ok and not having too many of these dreams and hallucinations. In fact, they end up taking bets on who is going to wake me up because I can be a real difficult person to wake up. There have been times that I have been in such a deep dream or hallucination that in the process of them getting me out, I end up slapping them. My parents have learned to watch with all eyes when they are waking me up because they have learned to ‘duck’ so they aren’t slapped or anything. I don’t intentionally mean to hurt them, but it happens.
Another reason I really need to know if I am going for ketamine is so that I can prepare my music on the iPod. When I started going for the ketamine and my dad wasn’t allowed into the room, I would make music playlists so that I would be occupied with something and I would hopefully be able to keep all that bad hallucinations and dreams away. I was also hoping that it would keep me ‘calm.’ But when my dad was allowed into the room to stay, I stopped really bringing the music in and listening to it because I rather have had my ears open to hear my dad. The thing is that even though you are in a ‘coma,’ you can still hear at times what is around you. That is why doctors always say that it is important for people to visit patients when they are in a ‘coma.’ However, I was thinking about bringing music again as a way of relaxing. So of course I would have to set it up and pick out some good songs and set up a playlist. So if I was to go for the ketamine tomorrow, I really need to get started. I really don’t know what I should put on it though, but I know my old playlist is so out-of-date and I could use some new stuff.
Whether I go for the ketamine tomorrow or Monday, I play on bringing my new bear with me. Even though the original FALBEAR has been going everywhere with me, I am going to bring my new FALBEAR2 with me that my parents bought me because the original FALBEAR was left on the plane when we last went away to North Carolina and we didn’t know if we would see him again. I know I am an adult, but I still love my bears and they really keep me calm when I go for procedures and such. Whenever I go away or have something done, I just have to bring him with me.
Before I go, we are also having problems because we need to find a GI doctor in New York that will be able to handle my condition. Since I am extremely complicated, there really isn’t a lot of doctors familiar with my condition or capable of handling me because not only do I suffer from a rare and complicated GI condition, but I suffer from all those other co-morbidities that go hand and hand and most doctors don’t want to get involved with it because they don’t know how to handle them. They are also afraid to touch me because of how ‘sick’ I am. That is the thing that bothers me. Doctors too an oath to help others in need, but yet when people are too sick and complicated, they are afraid to touch them because they are afraid of ruining their reputation or something. Doctors who are supposed to be more interested in helping others care more about themselves and their reputations than anything else. It is so unfair.
We have tried numerous GI docs in New York and there really aren’t any that can help me. That is why we have been traveling across the country to Stanford and such for treatment. However, I have been deteriorating and getting so bad that my doctor in Stanford really wants me to have a doctor familiar with me in New York in case something should happen. He doesn’t have to be as knowledgeable or capable in treating me as the doctors in California, but I really need someone here in New York because it is getting too dangerous.
The problem is that we have been looking and looking and there really aren’t any that are capable of handling my illnesses. My illnesses are rare and the very few (and I mean few) that can maybe give me that limited help in an emergency do not take my insurance. So we really don’t know what to do. I do have that doctor in Philadelphia, but it is still a trip. But my dad says that it looks like we are going to have to go to Philadelphia because we can’t find anyone closer.
Since my GI system has been getting worse and I have been in more pain than usual, the doctors in Stanford want someone nearby in an emergency because they think it is too dangerous to advise across country without seeing me and given that it could possible be either an obstruction or a colon twist, it is something that clearly needs to be looked into a.s.a.p. The doctors in Stanford want me to get it looked into because of how dangerous an obstruction is and especially how dangerous a colon twist is and how it requires emergency surgery because he feels that if this is the case that it can’t wait. The doctor in California wants to know exactly what is happening and what he is dealing with but like I said, he doesn’t want to do this across country and wants someone here that can be capable of doing this and then delivering the information to him so that he knows how to proceed. Time is definitely of the essence… especially with an obstruction and even more so with a colon twist. So my dad said that it looks like we need to make an appointment with the doctor in Pennsylvania as soon as possible. Even though he is not exactly around here… he is the closest and probably the most familiar. If nothing else, this doctor does give a lot of lectures about my illness and is known in the GI community. Yet, he is definitely not as good as my doctors in Stanford.
Well… I guess that pretty much sums everything up. I just wanted to let you know all that has been happening. With all that I am going through, I definitely wouldn’t be able to overcome all this stuff it wasn’t for the incredible support that I receive from terrific people who care like you. I have lost a lot of friends and family throughout this illness because they don’t understand my illness and such. You really learn who your true friends are when you are sick. They are the ones who stick by your side through the good times and bad and don’t shun you away because you are not well and consider you a bother. True friends who will be in it for the long haul.
People don’t realize that it is ‘friends’ that gets me through this disease and through each day. Yet, some people think that I think nothing about anything else but my disease, my pain, that I are too focused on it and that is why I am so depressed, so sad, and I hurt so much. But how can I not think about it all the time? I constantly have to worry about medications, therapies, appointments, etc. The truth is my disease a major part of my life. It has to be factored into every decision I make, if it isn’t I will pay for it later.
Some people might say that they have left because I am not the same Fallon that I once was. But how can I be? This disease has changed me. Some might say that this disease has consumed me. They might be right that this disease might have consumed me, but it has definitely not defined me. How could this disease not consume me when it robbed so much of me and has forced me to become totally isolated from the world? It has robbed eating, walking, hanging out with friends, etc. It has given me pain 24/7 so that I can’t escape from it, made my appointment book be filled with doctor appointments instead of social events, etc. I am faced with this disease all the time and never get a break from it. As much as I would like to go out shopping, to lunch, etc., I just can’t. The medical problems and meds can cause stomach problems and therefore, being out can cause unforeseen problems. So how can people not same that it has ‘consumed’ me. However, it definitely has not ‘defined’ me. I am still the same person I once was in the sense that I still love to do things like talk to people, hang out with friends (even though I might have to adapt to having them come over instead of going out), helping others, have a passion to read, have a passion to help others, etc. I am still the same sympathetic and lovable person who is still trying to conquer the impossible and trying to live my life and beat this disease. But people don’t see this.
I only wish people who say that they are your friends and will be with you forever always mean what they say. My dad always tell me that people aren’t always like me because I am always supporting and helping people and being by their side. I never walk out on them especially when they are most vulnerable and in need. Family and friends have to understand that I don’t want to cancel plans, but sometimes my body just can’t deal with being up and out. Between the conditions, meds, and treatments, my body can only deal with so much. Don’t take it personally. Something I’ve said from day one.
People don’t appreciate all that they have and when they have their ‘health’ that they have everything in the world. Unfortunately, I didn’t realize that either until I got sick. However, when you are sick… you need all the support that you can because even waking up and making it through a day is impossible when you don’t have the support mechanisms behind you. People don’t realize how important friends are in someone’s life who is very ill. I think about the people I had expected to be the most supportive and the people who actually were as well as how hard it was to forecast who would be which. Supportive families and friends play an essential role in helping someone they care about cope with illness. Those who best manage their illnesses often have a strong social network to support them.
Well… that being said… I guess I better get going. I do wanna thank everyone who has been by my side throughout this entire illness and who has given me support, encouragement and prayers. I can’t tell you how much all of this has meant to me. Doctors have told me that they can’t believe that I am still alive and made it this far. They are amazed in the condition that I am in that I am still alive. But it is only because of all your support and prayers that has made that possible and I thank you. Whatever should happen, I want to thank you from the bottom of my heart and tell you how much I have appreciated all that you have done. I only hope that you will continue to pray for me, as well as support and encourage me so that I can continue to defy odds and perhaps win this war against these illnesses. I only hope one day to become that doctor I so want to be. I will let you know what the results are of the pathology of the bone that they are doing when I get them. Please say a prayer for me tomorrow in case I go for the ketamine.