FALLON MIRSKY

Please help SAVE MY LIFE!

June 28, 2013

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Hi-

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.

ImageWhether 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.

Love,

Fallon

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June 26, 2013

ImageHello-

 I just wanted to let you know the newest info because I always promised that I would update you whenever I knew something or something happened to me.  However, since both is happening… I felt like it was time to write again.

 First of all… I guess I should start with what is happening.  I am really not doing well at all and really deteriorating.  Ever since the accident in May, I have been deteriorating at even a faster rate.  It is like the accident lit a match on this disease and started a fire under it.  I so wish that accident occurred because it really changed a lot.  Even though I was sick before and was deteriorating, at least I was better than I am now.  The accident really set off my illnesses and caused it to severely worsen because any trauma sets off my accident and causes it to worsen and exacerbates it.

 I know it sounds weird, but my disease spreads trough ‘trauma.’  Unfortunately, my body cannot handle anything that ‘hurts’ it and of course the more traumatic the experience such as surgery or a major car accident like I was in will cause it to spread very easily.  However, it can just as easily spread from a hug, a needlestick, etc. but the more traumatic the event, the more likely my illness will spread.  My disease, RSD, involves “irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin.” That being said, it is no wonder that the more traumatic an event, it will cause more of this ‘irritation and abnormal’ excitation of nervous tissue. It’s not well understood why injuries or traumatic experiences can trigger complex regional pain syndrome, but it may be due to a dysfunctional interaction between your central and peripheral nervous systems and inappropriate inflammatory responses. 

 However, it is known too that emotional stress is a known factor to worsen the illness as well and spread the disease and since the accident, I have been more ‘stressed’ than ever before. I mean how can I not?  Look what has been happening.  I have been deteriorating at a faster rate, feeling horrible, needing even more treatment that I can’t afford, etc.  So it is like one thing than another.  I am like its never-ending cycle as one thing affects the other and its snowballing out of control.  But the end result is only that I am the one that gets hurt because even though one thing is causing the other, I am the one who is suffering in the end because my illness is worsening, which is causing me great harm.  Not only is my body shutting down at even a faster rate, but also the pain is totally out of this world.

 One of the upcoming treatments that I will be having is a huge intensive ketamine coma in North Carolina.  Even though I have been getting ketamine comas in New York about every other week, these comas are no way in close to the amount of ketamine that I require to help me.  Ideally, I really need to go out-of-the country to seek a very intensive ketamine coma.  However, at the present moment I cannot go because it is unaffordable along with other reasons.  Therefore, the only choice I have is to have a more intensive ketamine coma in the United States in North Carolina. Like I said before, even though I am getting ketamine in New York, it is only for one day and the amount I receive is very little in comparison to the amount I require. Very few places in the United States do the ketamine coma at a much higher amount and the places that do offer this are extremely costly.  But since it is at least cheaper than going out-of-the-country, at least it is better. But I still of course need to find a way of finding ways to pay for this coma because even though it is ‘cheaper’ it is still a tremendous financial hardship and I honestly don’t know how we are going to end up paying for it in the end.  I only fear in the end that I won’t be able to receive it because they want over $30,000 just for the coma, which is something that I definitely can’t afford.  That is only one of the many reasons why I am pleading more than ever for help from others.  Without this coma, I will continue to rapidly deteriorate and end up dying.  Even the doctors have said that I need this in order to have a chance of living.

 Ketamine is a dissociative anesthesia that is often used on children and in veterinary medicine.  The patent has long expired so the drug makers have no interest in research.  Even if they donated the medication, it is not the expensive part of the treatment.  When being given intravenous Ketamine, you must be on a cardiac monitor, have oxygen monitoring, blood pressure monitoring and direct nursing care.  It is this component that makes the infusions very expensive.

 However, I have been fortunate to find a place that will give me a more intensive ketamine coma, as I would be given a higher dose and in the coma for about 8 days even though the dose still will not be nearly as high as I would receive out of the country.  But it would be much better than the ketamine that I receive in New York.  However, the problem is that unlike the ketamine that I go for in New York, there is a different protocol in undergoing the coma.  Whereas I could remain on all my medications for the ketamine comas in New York, I cannot remain on certain medications for the coma in North Carolina because the ketamine will not work well with it.  As a result, it gives me no other choice but to come off the meds because I desperately need that more intensive coma in North Carolina because I am weakening and getting so bad.  I desperately need that higher dose of ketamine because has the ability to block NMDA receptors.  Ketamine is the only potent NMDA-blocking drug currently available for clinical use. It is believed that an appropriately prolonged infusion of Ketamine appears to maintain a level of Ketamine in the central nervous system long enough to reverse the effects of the sensitization process and associated pain as well as reverse this disease including the autonomic dysfunction and all neurological dysfunction.  Experimental evidence suggests that this disease is due to a release of glutamate from peripheral nociceptive afferents onto dorsal horn neurons within the spinal cord. The glutamate released, in turn, stimulates NMDA receptors on second-order neurons that produce the phenomena of windup and central sensitization. As a result, it is reasonable to consider that, by blocking NMDA receptors like with Ketamine, one might also be able to block cellular mechanisms supporting windup and central sensitization. Inpatient admission for the admission of IV Ketamine coma is considered the standard of care for my neurological disease.

 That being said, I have to come off many medications that would interfere with the more invasive coma and as a result, it means that I have to come off some of the painkillers that I am taking to ‘ease’ the pain.  I also suffer a lot of comorbidities such as Gastroparesis, Osteonecrosis, pituitary tumor, etc. and taking me off these medications are not just affecting the neurological illness and causing me to feel worse in that area, but it is causing me to feel worse in the other areas as well because the Gastroparesis, Osteonecrosis, etc. is just so very painful.  You know things are bad when you speak to other people suffering from these conditions and who underwent this procedure and they say that they had to take sleeping pills just to make it through this ordeal because it is too painful otherwise.  However, I am on so much medication and the coma isn’t right around the corner and I can’t sleep the next few months.   I cannot be Rip Van Winkle even though I really wish I were.  Unfortunately the coma isn’t scheduled until the latter part of the summer like in the beginning of the September or October because it takes time to come off of all the necessary medications, and I can’t sleep til then. I can’t come off them too fast because it can easily kill me if taken off too quickly.  So it looks like I will just have to endure what is to come on top of everything else.

 I have really been suffering worse than ever though.  The pain is just so excruciating and the autonomic dysfunction is totally out-of-control.  I keep breaking into blisters because I get so hot and I can’t sweat because of the autonomic dysfunction.  Nothing cools me down and I can’t even tolerate things blowing on me or a cold compress or an ice pack anyway because of my extreme hypersensitivity. I am in extreme pain 24/7 and having the a/c directly blow on my skin or putting water or ice on me literally sends me through the roof.  I can’t even tolerate anything on my skin like pants because I am so sensitive… especially when I get these ‘hot flashes.’ 

 In addition, I have been getting the worse pains in my abdomen.  I never had pains like I have been receiving.  Every time I eat or drink it is even worse.  It really is hard because I am so thirsty that I am dying of thirst.  Yet, every time I drink the pain worsens so much that all I can do is curl in a ball and cry.  I can’t even ‘walk’ with my crutches because every step feels like there is a knife going through my abdomen.  We don’t know what the cause is.  When I spoke to the doctor he said it could very well be pancreatitis, which is extremely painful, or it could be a result of the ‘obstruction’ or colon twist that I have in my abdomen.  I never had it so bad. 

 Knowing how bad I am suffering, something has to be done.  Like I said before, we are planning that intensive ketamine coma in North Carolina, but it isn’t for a while.  I just hope that I will be able to make it that long because every day is extremely CRUCIAL.  We aren’t even sure each day if I am going to make it through the day because everything is ‘touch’ and ‘go’. But we are just keeping our fingers crossed like we always do that I will make it.  No one thought I would make it this long, but I am still here.  I am defying all odds, but to be honest with you… I don’t know for how long.  I also don’t know how we are going to afford this treatment, so we are hoping that in the meantime we will be able to find a way to pay for this ‘coma’ as well since it is very expensive.  It would definitely stink to suffer all this and wait all that time to have the coma and then I won’t be able to go for it after all because we can’t afford it.  So if you have any suggestions or can spread the word that we need desperate help, we would really appreciate it.

 In the meantime though, something has to be done in order to ‘buy’ me time or I am definitely not going to make it.  This is another reason why I am writing.  As I told you before, we have an upcoming trip to California planned for July 21st.  During that time, I will be having multiple surgeries including surgeries to have a PICC line inserted, surgeries to have tubes placed so that they can try to ‘feed’ me, surgery to try to remove the stool that I am so loaded up on, etc.  It is really going to be a difficult time with all these surgeries.  Even though I have had some of these surgeries before like a PICC line and tubes to feed me that failed in the past, they are going to try to do them again in hopes that it will work.  After all, we are running out of time and running out of options.  In terms of the tubes to ‘feed’ me… they are going to try to position tubes into my intestines in a low enough portion in hopes that they can find even a very small viable portion that would still be able to ‘accept’ food.  But I am really nervous because not only am I going to be undergoing many surgeries, it will really be in a tight timeframe because I just found out that my head doctor will be leaving Stanford right afterwards.

 I will be my head doctor’s final patient at Stanford.  I was told that he will be leaving right after me and therefore, it is important that I be out of the hospital and everything accomplished by a certain date since he will no longer be there.  I am really upset because I really hope that I will continue to be a patient of his because he is the only doctor who is knowledgeable, capable, and willing to treat me.  Never before have I met a doctor that is so knowledgeable in my GI condition and know what to do.  In addition, he has such terrific bedside manners and doesn’t do anything that will ‘hurt’ me.  He takes my overall disease into consideration when he works on me and understands how doing anything can affect another condition that I suffer from.  Instead of him doing what he wants, he works WITH me so that I am not suffering even more even though by textbook and medical books it might be the right way to go and the best option.  For me, I can’t always go with what always is written in medical books as the ‘appropriate’ treatment. I am extremely complicated and what is normal for a regular person is definitely not normal for me.  Doctors really have to use their brains with me and what is obvious on the surface is definitely not what is going on with me on the inside.  That is why most doctors can’t treat me and refuse to treat me.  I am not an ‘easy’ case and since I am a challenge to them, they don’t like to treat me.  Doctors hate to ‘think,’ as they always say it is in a patient’s ‘head’ when they don’t know something or can’t figure something out.

 My doctor is the first to admit that I am a real challenge.  But no matter what, he always is able and willing to help.  He always takes his time with me and lets me ask as many questions as I want too, as he never shuns me away from asking something… no matter how stupid it may sound or even if he doesn’t know the answer.  Like I said before, he is the only doctor willing to even ‘touch’ me and do something without handing me off like a hot potato because most doctors are scared because I am not in the best condition.  Doctors usually don’t want to do anything that will threaten their reputation.  However, my doctor is always willing to help me in any way possible. 

 I have one of the best doctors there is in the business.  However, I am really terrified that he will be going back to Africa or something so I won’t be able to continue being a patient with him.  Of course if he moved to another hospital, we would love to follow him.  However, when we asked him where he is moving to, he just continues to tell me that he ‘isn’t sure’ and that he has a lot of ‘options’ at the moment and won’t know until mid July.  I know that he set up a whole intestinal program in Africa and I am so scared that he is going to go back there because I won’t have him here.  But I guess all I can do at this point is wait and hope because I have been to numerous physicians and no one is like him.  He is simply the best.

 In addition, I am writing to you to inform you that I have an emergency appointment at John Hopkins coming up.  I had to make an appointment for July 12th because of how horrendous things are getting.  I am really hoping that they will be able to help me, especially with the chances of my current GI doctor leaving.  My GI doctor in California always told me that if I ever had an emergency or had to go to a hospital, I should go there because it is the best hospital to go to besides California.  I should also let you know that the mentors of some of my doctors in California are supposed to be there, so that is a good thing too.

 I will be meeting with so many people when we go to John Hopkins.  I will be meeting with the whole entire GI team and the neurological team as well.  Hopefully between the two of them, they will be able to help me out.  John Hopkins Medical Center is a very well known hospital and I am only hoping that they will be able to help.  I know that they have a very good team for my GI problems and gastroparesis, but I don’t know in the end if they will be able to do the multiorgan visceral transplant.  Maybe I won’t have to end up having that in the end.  I can hope, right?

 I also know that John Hopkins has one of the best swallowing centers in the world and since I am unable to swallow due to the disease affecting it, I am hoping that they will be able to help me in that area too.  Many doctors don’t now how to treat my ‘swallowing’ and it is getting much worse.  I cannot swallow basically any food and even swallowing pills is getting literally impossible.  It has gotten to the point that even the carbonation that I have been using in order to get the pills down is not working anymore.  I basically live on medicine, as I take over 50 pills daily.  It literally takes me forever to take my medication and I can’t afford not to take it. I need the meds to function and stay alive, so it is important that I take them.  Yet, if something isn’t done soon… I don’t know how much longer I am going to be able to take them.  It is getting to be impossible to take them!

 I have been to John Hopkins before and they are an amazing hospital.  I went there last time with my mom and this time I will be going with my mom.  When I called to make the appointment, they really didn’t have any appointments for a couple of months.  However, they saw how very ill I was and how much this was an emergency.  Therefore, there ended giving me an appointment as soon as possible and with one of the best doctors too even though they are all good doctors who practice there.  This hospital is used to dealing with rare and difficult cases… so I am hoping that they will be able to help me.  They work on cases that no other doctor can figure out or willing to take on, so I am hoping and keeping my fingers crossed that they will be able to help me too.

 So… that appears to be the upcoming plans.  A lot is happening.  I will have this big trip to John Hopkins on July 11th for a few days and then I will have the huge trip to California on July 21st.  I just hope that I can make it.  I also hope that my body will hold up because I am so much in pain and weakening so much and deteriorating every day.  Each day is a battle to get through and getting harder and harder.  In addition, traveling is not the easiest on me and really worsens and weakens me as well.  I never come back the same when we go away and that is one reason why it is crucial that they will be able to help me because I really don’t have ‘room’ to weaken anymore without dying.

 I just hope I am going to make I through all this… physically, medically, emotionally, and financially. I am definitely going to need as much help as possible in order for this to happen!!  I am definitely going to need the help of others more than ever because I need them for support, encouragement, and prayers because like I said before… I am weakening every day and deteriorating and all this traveling takes a huge toll on my body.  In addition, I will be undergoing so many tests, procedures, and surgeries that I really need to be ‘strong’ in order to make it through them.  Having the support of others and knowing that they are behind me really makes a huge difference because it gives me the extra strength to keep going.  It definitely helps get me over the bumps in the road. In addition, I will need help financially as well because besides needing help paying for treatment, the traveling costs will be extremely costly as well.  We don’t know how we are going to afford all this traveling, surgeries, procedures, etc.  Everything is just so costly and we really don’t have the money.  Yet…if we don’t get this done, I will end up dying.  So what choice do we have?  I only hope and pray that others will find it in their heart to help donate and raise funds because I don’t want to die and need as much help as I can get.  If you can bring as much attention to my illness and donations as possible, I would really appreciate it because it stinks that the green paper is so important in this world and basically controls whether I live or die. 

 Well… I gotta go.  It is that time to take more meds.  I have been living on ice-pops that are medicated.  Thank goodness I have the best dad in the world because besides working so very hard and taking me to all these appointments, hospitals, surgeries, etc.…. he will wake up all throughout the night to take care of me.  He will constantly go downstairs throughout the night to the freezer so that I can have my medicated ice-pops even though he rather be sleeping.  Who could ask for a better dad?  Not only is he my dad, but also he is my best friend and my hero.  I love him so very much.

Well… hope to talk to you soon.

– Fallon

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June 24, 2013

ImageHi-

 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. 

 ImageEven 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.

 Love, 

Fallon

 

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June 22, 2013

ImageHi-

Just wanted to inform you of the absolute latest that has been happening like usual.  I don’t know how much I am going to be able to write tonight or how coherent it actually is going to be because I am not feeling well tonight.  It is actually a ‘bad’ night tonight… then again what night isn’t lately?  Things are just getting worse and worse.  Yet, I am trying to hold on and hoping that things will get better despite all that is occurring.

It is another night awake and being spent alone while all the normal people in this world are fast asleep and enjoying themselves in ‘dream world!’ What I would simply do to be able to enjoy that aspect of life again. Yet, I have had that luxury taken away from me thanks to this wonderful disease and it has gotten even worse ever since the exacerbation of my illness.  My illness has progressively been getting worse and especially since the accident that occurred this past May, my illness and disease has really taken off.  Ever since May, I have taken a severe downturn and it is at the point that we don’t even know if I am going to make it through the night at times.  It is just one thing after another and it is just suffering 24/7.  If I thought it was bad before and I was suffering prior to the accident, it is even more horrendous and unbearable now. Then again what did I expect?  This accident ended up spreading and exacerbating my illness and therefore, it is no wonder that I am so much worse.

My life has totally changed since the accident in May.  My life has totally transformed because even though I have had this illness longer than that, I have had so many more complications and so much deteriorations since then.  My body has really been shutting down since the accident and as a result, something really needs to be done and done quickly because if it isn’t… I am afraid that I am not going to make it much longer.  Even my doctors are fearful for my life. Since the accident I have gotten worse in so many ways and even have lost weight… weight that I definitely could not have afforded to lose.  I am basically now weighing in the 60s and even that isn’t really accurate.  I most likely weigh less than that and weigh in the 50s because the truth is that I am loaded up with pounds of stool.

As a result of my illness, I suffer from severe gastroparesis.  My whole entire GI system is basically ‘dead’ and there is absolutely no movement whatsoever throughout my GI track.  I have no peristalsis or movement through my stomach, intestines, etc. and as a result, I am basically completely full and loaded with pounds of stool that cannot come out and resulting in producing added weight. Not only is this adding to the additional pain and discomfort that I am already feeling because of my illness, but it is also causing me not to want to eat as well because it is making me feel ‘fuller’ than usual.  Not only can I not eat because of the severe gastroparesis and the trouble swallowing, but because of the fact that I feel so ‘full.’  They have tried numerous techniques to remove the stool like enemas, laxatives, enema bags, even NG tubes with the mixture that they give people to clean themselves out prior to getting a colonoscopy, but nothing has worked.   In fact, even when I had the NG tube, they were only able to give me less than a ¼ of the mixture called GO LITELY and then it ended up backing up through the tube and the tube had to be removed. The only thing that will work and will have to be done will have to be surgery to remove the stool.  But I am really nervous because not only is it surgery and surgery is dangerous in general, but surgery will also make my illness worse because any type of trauma to my body makes my illness worse and spreads it, which is definitely something that I can’t afford. In addition, I am scared because since I have all this added weight from this stool, I know that I will lose it when I have the surgery.  As a result, I probably will end up weighing only in the 50s.  That is definitely way too low and dangerous.

Things have really gotten horrendous since May and dangerous.  Even though I only lost about 5 or so pounds since May, it really is a lot and extremely dangerous because that is definitely a lot of weight to lose when you are only weighing in the low 70s.  When you weigh that little already, you cannot afford to lose absolutely anything.  The doctors are really fearful because not only am I now at even a more dangerous level in weight, but my BMI is only a 10.8 and that is super dangerous.  They are even quite surprised that I am even living at a BMI at that level.  A healthy BMI (body mass index) is between 20 and 25 while a reading of less than 15 signals severe danger because the person is severely underweight.  A BMI nearing 15 is usually used as an indicator for starvation and the health risks involved. The lowest BMI ever that was ever recorded and the person ended up dying was 9.  So, you can imagine how scared he doctors are and so am I because I am not that far from it.

As I just also mentioned, my swallowing has also gotten worse since May too, which has also resulted in the weight loss.  Even though I was so limited in what I could eat at that time, it has become even less now. I basically can nothing now because everything is giving me problems. The few things that I enjoyed can no longer happen and even drinking is giving me problems.  I am basically living on egg whites and ice cream, but even that is with tremendous difficulty.  I am having an awfully hard time taking anything… even the medicated ice pops that I need to take to raise my bloods.  Whenever I need to drink anything, it is a real battle because I literally choke on everything and when I do manage to get it down, I automatically get severe pains and become distended.  I get so distended that I look like I am 9 months pregnant and ready to give birth.  The only chance I have of getting fluids down is to make them ‘slushies’ because I can’t drink them if they are pure liquids.

I am also getting severe pains whenever I eat.  Like I said before I become distended as well when I eat or drink too. It really stinks because I am so thirsty and nothing quenches my thirst.  I am even in a ‘catch-22’ because if I don’t drink I am dying of thirst and then I suffer in tremendous pain and agony when I do drink.  I can never win.

To make matters worse, I am having so much difficulty even taking my medications.  It literally takes me 10 minutes to get down my medications and the only hopes in getting them down is with something carbonated.  I guess the ‘fizz’ or carbonation helps to push it down.  However, I can’t afford to not take my meds because I need them to somewhat function and to look somewhat normal.  I don’t even take a few medications either.  I take over 50 pills daily and take pills for breakfast, lunch, and dinner. My snacks even consist of pills. So for me to have this much trouble with my pills, it is not a good thing.

Since I am doing so much worse especially now, I can’t take it any longer.  As I told you in a previous blog, I have to wait until I come off certain medications in order to proceed with the intensive ketamine coma that I so desperately need.   This is a different type of ketamine coma because as you already know I have had previous ketamine comas and have been on these medications in the past.  This ketamine coma though is very different and much more intensive that I will be receiving in North Carolina.  So in the meantime we also have to do something to ‘buy’ me time.  Even though I did have the option of going to have another machine put in me even though I had one previously and it had failed me, I have decided to put that on hold and proceed to go to California because I desperately need surgeries on my GI tract because I can’t take it anymore.

However, we don’t even know if I will be able to come off the medications in the long run because I have a lot of comorbidities and these medications are being used to treat those issues as well.  As a result, if I come off of these medications, it might make these issues worse such as the pain and therefore, it will be something that can’t happen.  We have started to cut down on the medication already and I have been really suffering more already.  Even though we only cut the dose 30 mg, I have been feeling a huge difference.  So we don’t know if we will be able to continue to cut down the meds.

In addition, I will be going for another ketamine coma this week or the beginning of the following week.  Even though I have been going for the ketamine comas in New York, it is no way in comparison to the ketamine I will be getting in North Carolina.  I really need the ketamine that I receive every other week in New York especially now since the accident because we are hoping that the ketamine will help to alleviate some of the pain as well as hope to stop the progression of the disease that the accident has caused.

Since the accident did cause exacerbation of my illness, I am doing worse than ever and it has really made a great impact on my overall status.  I have developed an obstruction or a colon twist and as a result, it needs urgent attention.  We are unsure as of now if it is a colon twist or an actual obstruction, but once it is determined, I will need surgery immediately.  We have been trying to hold out as long as possible because surgery isn’t the ‘easiest’ thing on me because of my overall medicals status and condition, but we really don’t have a choice.

We are not sure if it is an actual obstruction or a colon twist.  We know that since I do have the severe gastroparesis and that my GI tract is ‘dead’ I have a lot of air and pressure being put onto my organs, which is shutting them down. As a result, the doctors have always told me that it is quite possible for my colon to ‘twist’ because of this air and pressure and if it did, it would be an immediate emergency because I could easily die from it. When I was at the Mayo Clinic, it was determined that there was this finding as well as matted small bowel loops and as a result, attention is needed.  However, with me having this neurological disease that can worsen with surgery, the health status that I am in, and the fact that I have so much air in me, it really makes having surgery complicated and extremely dangerous.  I am just hoping that it can be avoided to have a colostomy because I don’t think I can take it.  With everything that has happened to me in the past and how I was robbed of so many things that people take for granted such as eating, walking, and been suffering so much of pain 24/7, etc. I don’t think I can handle a colostomy bag on top of everything else.  Haven’t I done enough suffering?  Shouldn’t I at least get a break and be able to avoid this?  I am only hoping that it is an obstruction rather than a colon twist because I know that a colon twist is much more dangerous and will need much more immediate attention and surgery than the obstruction.  So who knows if I will make it until we have planned the surgery if it is an actual colon twist?  You Know?

I can’t do anything without doubling over in pain.  Not only am I in severe pain throughout my entire body and suffer from an extreme tummy ache, but I have this deep ache in the pit of my abdomen above my belly button.  It is basically right where the colon twist or obstruction is.  Also, I can’t take eating and throwing up anymore.  Every time I eat, I end up vomiting because I cannot keep down food.  Even going to the bathroom is giving me problems, as I am suffering more than ever from Pelvic Floor Dysfunction, which refers to a wide range of issues that occur when muscles of the pelvic floor are weak, tight, or there is an impairment of the sacroiliac joint, lower back, coccyx, or hip joints. Tissues surrounding the pelvic organs may have increased or decreased sensitivity or irritation resulting in pelvic pain and it causes me to have extreme difficulty evacuating stool.  Therefore, it adds to the reason why I am suffering from constipation and why I am always producing mucous.

The pains and discomfort from my stomach have gotten so bad that I can’t even sit at the dinner table anymore with my family.  Even though I couldn’t eat dinner really with my family beforehand, I still sat with them so that I could still spend ‘family time’ with them and talk to them during dinnertime.  However, I am so much in pain now from my disease that it makes it literally impossible.  All I do is lay on the couch because all I can do is curl up in a ball like a cat especially when I eat because of the extreme pain and cry.  While my family eats, all they hear is me crying in the other room because I am suffering from so much intense pain.  They hear me crying in agony and pleading with someone to ‘please help me’ because I can’t take it anymore.  It is absolutely excruciating.  Even the little drink or food will cause me tremendous pain.

Something has to be done and done quickly because I can’t take the pain anymore.  Plus, since I have to wait for the intensive ketamine infusion until I come off the medications, we have to do something to ‘buy’ time.  As a result, we have come to the conclusion that we are going to head to California to take care of the GI issues.  I will be receiving multiple surgeries and during this time I will also be getting ketamine because it will be used in hopes to keep the disease ‘at bay.’  Since surgery is known to spread and exacerbate the illness, ketamine will be used to hopefully contain it.  Even though it won’t be the intensive ketamine coma that I need, hopefully the ketamine that I will be given for the surgeries will still be able to do something for my illnesses to help me besides just ‘containing it’ and not allowing it to spread further.  Maybe it will help with the pain as well and do something that the intensive ketamine coma could have done.

ImageSo the plans are set and we are supposed to leave July 21st.  I know it is still a month away, but that is the soonest that we can go.  People think that it’s so easy to just go and have surgery when it’s needed.  However, the types of surgeries I need can’t just be scheduled in a blink of an eye.

Even though the surgeries are scheduled a month away, it will take that long to get everything situated.  First of all, I have to have the surgeries when the doctor is available.  The only time the doctor is even available besides this upcoming week is during that time.  Of course this upcoming week is too soon to get everything organized with everything else and therefore the only option is to have it on July 21st.  Second of all, it isn’t like I am having one surgery.  Since I will be having multiple surgeries, it will need plenty of scheduling and be time consuming.  As a result, it is not something that can be scheduled overnight.  So by the time each surgery is scheduled and approved, it will take some time. Even though I am sick and important, I am not the only sick person in the world.  There are plenty of sick people in the world and as a result they need surgery too.  Just like they had to wait their turn to have surgery, I have to wait my turn.  I can’t just ‘cut’ the line because my name is Fallon and need to have surgery.  You know?

Finally, I also have to find a way of raising funds because it will be extremely expensive.  Not only do I have to factor in the cost that I have to travel across country to California from New York, I will also have to factor that cost that it will be multiple surgeries and therefore I will be in California for some time.  As a result, hotel accommodations will have to be made, a car will have to be rented so my dad can get to and from the hospital, there will be the cost of living expenses, etc. We also have to factor in the cost that during this time my dad will be with me and not able to work.  Therefore, we will not be having an income during this time and it would mean that our pile of bills couldn’t be paid.  Even though my dad will be going with me for the surgeries, my mom will remain at home to try to hold down the house. Even though I would love for both my parents to be there with me especially since I am so very sick and could even die, we cannot afford for the entire family to be there.  Someone has to stay home and take care of the business somewhat and try to pay the bills.  However even though my mom will be home to answer the phones, there will be no work to go out and money will not be able to be made.  Most people don’t want to wait either so we will probably be hit hard too by this.

Therefore, it is more imperative than ever because we will need help in raising money for this trip and my treatment.  As you can see, this trip will be extremely expensive.  We will also have to worry about the copayments of these surgeries, which will clearly add up quickly because each day in the hospital will be about $150 and it will cost us another $100 each time I need a scan, procedure, or surgery.  Its just going to be one bill after another and therefore we are going to need all the help we can get because we already can’t afford my treatments.  If you can please help in any way possible and can think of any way of how to fundraise or raise funds, please let us know.  Every $1 makes a difference because it is one less $1 that we have to come up with.

I will be having multiple surgeries like I said.  I am extremely nervous and really didn’t want to have them done in the past because it required getting ‘tubes,’ but for me to actually be counting down the days until we go and I get it… you know things are bad.  I never wanted tubes because I always wanted to be somewhat ‘normal.’  I was always hoping that I would be able to be able to eat and such.  After all, this disease has taken so much from me already and I didn’t want it to take that from me as well.  Plus, I didn’t want to suffer from not eating either because I knew that I would then suffer from hunger pains then.  Since I will be fed through tubes, I will no longer be putting food in my mouth and swallowing it.  As a result, food will not register in my brain and I will no longer feel ‘satisfied’ even though technically I am being fed.  In addition, the tubes will be bypassing the stomach and that will also contribute to not feeling satisfied.  Between not eating it physically and not having the food in my stomach, I will not only feel not satisfied, but I will always feel hungry and I will get hunger pains. This was something that I didn’t want to face.

I also didn’t want to worry about never eating again because to me… meals are more than just making sure you eat enough calories for the day. I think that eating with others offers a sense community and togetherness with those eating with you. Even if I didn’t like anything on the menu, I still looked forward to the conversations and good times I knew I would have with my friends. It’s a time to catch up, tell stories, reminisce about past memories and form new ones.  However, I didn’t want to get the tubes because it would mean that I would never eat again and therefore, I felt that my friends would not want to have me around when they went out to eat.  I mean why would they want me to just ‘watch them’ eat since I couldn’t eat.  I mean I couldn’t blame them because I probably would feel awkward eating in front of someone that couldn’t eat too.

But it has gotten to the point that there just isn’t any other way.  Something has to be done.  So I will be going to California and having multiple surgeries. It isn’t set in stone, but the upcoming surgeries most likely will be as follows:  I will need to have surgery to have the stool removed, I will need to have surgery to put a ‘vent’ tube in me so that I can expel the gas buildup in me (every time I build up with gas and become distended, I will be able to open the tube and be able to release the gas instead of looking like I am 9 months pregnant and ready to give birth), I will need surgery to have a tube placed in my intestines to try to feed me (they are going to bypass my stomach and try to find a small viable portion of my intestines in the very end in hopes that they will be able to nourish me a bit and buy me time), I will be having surgery to   have the obstruction/colon twist removed, and I will be having a central line placed (because we need a way to access me better because my veins are failing me and with me being so complicated and deteriorating, they need a very easy and accessible way of getting access into my veins immediately).

So everything is all scheduled with that.  However, my osteonecrosis has also been worsening lately as well ever since the accident.  Like I have previously stated, I have a severe bone disease that entails having the jawbone being exposed and is starved from a lack of blood.  The bone actually is dead and the gums do not cover that area. It is caused because a decrease the bone’s ability to repair itself.  In addition, the doctors are thinking that the infusion that I receive because of my overall bone situation (bones too weak and could result in a life threatening fracture) is contributing to it as well.  It is like you do one thing to help one thing and it causes something else to happen. It is extremely painful and it is getting worse and spreading as each day passes.  Something has to be done because this is also only extremely painful, but it is causing it to be hard to eat too.

However, even though I am scheduled to see my usual surgeon for the osteonecrosis on Thursday, I also have an appointment with a top surgeon who deals with this condition especially at New York University Medical Center on Monday.   I am hoping that my doctor on Thursday will be able to do something and be able to help me more because at leas the takes my insurance plan.  With this disease, there are barely any doctors that treat this condition and take my insurance.  The doctor I am seeing on Monday is one of them that don’t take any insurance whatsoever.  So even though he might be the best doctor for this condition, I don’t know how I am going to be able to pay for it.  I have tried to contact my insurance company and tried to get them to cover me, but they refuse to do it.  But unfortunately it is a real necessity to be treated and as a result, I will especially really need to see this doctor if my current surgeon (that I’m seeing Thursday) can’t help me.  That is more reason why I am pleading and hoping that I will be able to raise money and why I need your help.  I am really deteriorating that really need your help.

In addition, I have been having a harder time functioning since the accident.  I am having a harder time with my memory, concentration, finding the right word when speaking, etc.  I am also more irritable lately and having more trouble sleeping.  The reason is because my disease causes changes in the Limbic System of the brain, which is the part that controls these things and since my disease has been worsening and making my body worse it is causing more problems in the Limbic System as well.

Since the accident, my sleep has gotten worse than ever and of course that is related to the illness as well.  I am so hypersensitive and in pain that I can’t get comfortable to sleep. I can’t sleep with a blanket and basically I cannot even move or turn because the slightest touch of the mattress or blanket on me sends the most excruciating pain through me.  Getting less sleep is definitely not beneficial because I do not reach REM sleep, which is the healing sleep our bodies need each day.

8645_10100809755091290_2076638316_nOh guess what?  I got back my bag that my dad left on the plane.  It finally arrived with everything in it. I was kind of shocked though that they delivered the bag without putting it in a box or anything.  They even left the bag on the porch unattended because no one was home when FEDEX dropped it off.  I was so surprised because there was all that medication inside and Southwest knew about it prior to shipping it.  They knew it wasn’t ‘everyday’ medication either but medication including Methadone, Morphine, injections, Narcotics, etc. Anyone could have went into the bag and took something out.

ImageMy other bear finally arrived. When my dad left the bag on the other plane, not only were my medical records and medications in the bag, but so was my bear that I took everywhere with me. I was really upset that I didn’t have him anymore because he was also the bear that I held onto when I wasn’t feeling well and made me feel better with my tummy when it hurt.  As a result, my mom ended up buying me a new bear in the meantime.  Whereas the original bear was named FALBEAR, my mom named the new bear FALBEAR2 and whereas the original was honey fur wearing a pink jumpsuit, this new bear is buttercream fur wearing a blue jumpsuit.  He is really cute and now I let him join the bear family.  Of course the original FALBEAR is still more special because not only is he the ‘original,’ but he has a special message engraved on his paw that my parents wrote to me that says ‘I love you.’

ImageI haven’t really been able to do much lately.  So I basically just spend my days isolated and with my animals.  Thank goodness for my dog and cat.  They are my life.  I would love to be able to go to the beach, but since I am so hypersensitive, I cannot really be outside because the heat from the temperature and the sun literally burn me alive.  Plus I suffer from severe autonomic dysfunction and as a result, when I end up getting hot, I can’t sweat to relieve the heat.  As a result, I end up overheating and feeling like I have blisters all over me.  It is the worst feeling.  This disease has forced me to become isolated in my own house because I can’t do anything.  My life totally revolves around this illness.  Thankfully I have  a shaded backyard and I always wait til it is kind of ‘cool’ out or that ‘perfect’ temperature so that I can go out.  Of course I have to make sure that it isn’t windy or humid either because that affects me too.  If all is a ‘go’ and I get to go out, I love to sit outside with my dog.  He even has his own seat.

Well… I guess I better get going.  I am going to go and try to read a bit.  I am reading James Patterson’s newest novel called “12th of Never” and can’t wait for his latest book to be released on Tuesday.  I can’t believe how many books he has written.  He must be the author who has written the most books ever.  I gotta keep myself busy because what else can I do when you can’t sleep like normal people?

Thank you for your continued support and encouragement.  Please continue to spread the word of my website and bring attention to it because I need all the help that I can receive.  Please continue to pray for me because prayers are very powerful and can do a lot of healing on their own.   Until next time…

Love,

Fallon

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June 19, 2013

ImageHi-

 I just wanted to write and let you know that I am home from our trip to North Carolina, but I wanted to also write and let you know all that has happened since I have written the other day.  Our trip home has certainly been an experience like always, and much has happened since.  I have also come to some conclusions and I also might be headed back to the hospital today or tomorrow, so I wanted to alert you to that as well.

 First, I guess I should tell you that I am not doing well.  I don’t know if it has to do with the trip, but I am not doing well at all.  It is very possible that I can end up in the hospital tonight or tomorrow, but I am hoping it won’t end up that way.  I have had this before when we went away and luckily it had passed, but this time is absolutely the worse.  I never had it this bad when we traveled and therefore I am scared that it won’t pass and it is finally time to go to the hospital.  I am scared that it is definitely something to worry about this time, as I am scared with what I am feeling that something drastic is going on and I am at the point where I am beyond the point that I can be ‘helped’ or bounce back on my own.

 I don’t know if it is because my bloods have fallen or that I have lost weight, but I am not feeling well.  Even though we were only away for a few days, traveling takes a HUGE toll on me.  I also had passed a lot of blood the other day, so I am worried that my bloods have fallen a lot.  I am suffering today with lots of spasms and cramps. I have gotten this before when we have traveled and I know that it was due to my bloods falling, so I am pretty sure that it is because of that.  I know my bloods probably did fall between losing weight on the trip and the blood. 

 I am having the worst spasms and cramps throughout my entire body and it is really scaring me because they are nonstop.  Dad wants to take me to the hospital and to be quite frank, I really might go.  Nothing I am doing is stopping them.  Dad has been up all night long with me trying to help me relieve the spasms and cramps, but nothing is helping.  At the very most, when I take the medicine, I get relief for about 10 minutes but the spasms and cramps just return.  I feel so bad that my dad can’t get any sleep tonight because he is so tired from our trip, but I am so glad that I have such a wonderful dad to be able to help me and get me what I need.

 I am just in the worst pain and agony.  Besides my usual pain and suffering, the pain from the cramps is so severe.  I am getting it throughout my body.  I am getting it in my arms and hands, in my head, and in my legs and toes.  Even though they are worse in my calves, ankles, and feet, I am still getting them throughout my body including my head and I am scared it is going to result even in a seizure because that is really what I feel might happen.  You know when you get those spasms and cramps when you are sleeping in your legs and they wake you up in the dead of night that you have to literally get out of bed to walk on them in order to relieve them?   You know the spasms and cramps that you get when you see your body actually twisting and contorting in all different directions?  Well that is what is happening to me nonstop.  It is agony.

 Since my bloods fell, I am trying everything and anything to raise them.  I am not only taking my ice pops that contain my heart meds in them, but I am also taking my heart pills, and drinking orange juice and Gatorade.  I am doing whatever I can to relieve the pain and spasms and to raise my bloods, but nothing is working.  I have tried to take 2 Tylenols in addition to all my other medications, but nothing seems to work.  I think that besides the bloods falling, I don’t think cutting back on my meds because the doctors want me off of them is helping the overall situation either.  After all, my body has been taking them for such a long time and they were afraid about me coming off of the meds too.  That is why they said I have to come off of them “really slow” because if I didn’t, it could easily be fatal. 

 So I am just hoping that this will pass.  It has gone away in the past, but it has never been this bad.  Like I said before… when I take the stuff… I feel a little better but it is only short-lived.  Then it comes right back.  Dad keeps saying that he wants to take me to the hospital… but I don’t know if I want to go.  I am scared… scared to go and scared to stay home.  So I figured that I would also write to you and let you know all that is happening in case something should happen because it is very possible something might.  This way you don’t wonder what happened to me in case I am “missing in action” for a while.  I also wanted to keep you abreast on everything that is happening.

 ImageLike I said though, traveling isn’t easy on me and could very well contribute to why I am feeling this way.  The trip home today was especially bad and tiresome, as nothing went right.  So besides losing weight and my bloods dropping, it is kinda no wonder that my body is reacting the way it is after all that has happened after the trip we undertook today to come home.  It was certainly an experience.  In fact, due to what happened on the trip home, it is one reason why I don’t want to go to the hospital.  I don’t have my medical records to take with me and if I go to the hospital, I like to bring them with me so that I can show the doctors, nurses, etc. all my records and pictures so that they know what they are dealing with.  I will explain what has happened so you are not out in the lurch. Don’t worry.  But another reason I don’t want to go to the hospital is that I just got home today and I don’t want to leave so soon.  Plus I just can’t just go to a ordinary or local hospital because they can’t treat me.  Instead, I would have to travel back to a distant hospital like John Hopkins or something and to make a trip like that so soon… I just don’t know if I can do it.

 Anyway… let me tell you all about the trip coming home because it definitely was an experience. In order to get to the main airport to come home, we had to take a private plane from Winston-Salem to Raleigh. The private plane that took us to the main airport to catch our Southwest flight ended up being delayed.  The plane itself was actually amazing.  It was a brand new plane and was simply gorgeous.  My dad sat up front with the pilot and was in heaven.  He thought it was awesome to be the co-pilot.  But between the weather and everything… we got delayed and I was literally sweating bullets because I thought we were going to miss our flight home. 

 ImageI kept watching my watch because I was freaking out since I thought we were going to miss our flight home since we were leaving so soon.  You should have seen me, as I was in the backseat of the plane sweating bullets while my dad was having the time of his life in the front because he thought it was so ‘cool’ to be the copilot in the front seat and the pilot was showing him everything.  I kept giving my dad looks and everything but my dad was like ‘we were circling and couldn’t do anything anyway… so why not learn… couldn’t do anything about it anyway.”  But I was really sweating bullets thinking we were going to miss our flight home. 

 When we landed, we literally just made the flight.  When we had to check in, the check-in guy took so long… for some strange reason he was taking forever.  I was watching people come and go and watching the time tick away. I thought I was going to die.  Then when we passed through security, we went through with this other couple that was really slow and giving them trouble.  They wouldn’t take off anything so that they could be checked out like their shoes and such, so we had to wait for them to remove each of their shoes, clothes, etc.  Then we had to wait for them to be ‘patted down’ and everything else.  They were just so slow and were taking their time, which was time that we didn’t have. I was like ‘our flight is going to leave’ but they didn’t care.  So my dad was like ‘forget about taking us’ because the southwest staff was pushing me to the gate and my dad literally grabbed the wheelchair and took me and started running to the gate with me in hand.  I never saw my dad run so fast with pushing me in the wheelchair.  He was like “excuse me … excuse me but we are late for our flight.” I thought he was honestly going to hit someone.  I never saw my dad like that.

 ImageWe just made our flight and the only reason we basically made it was because they held it because there was a mechanical problem.  Thank goodness for that.  But guess what?  Because this plane ended up being delayed, it forced us to land later than it was supposed to and as a result, it forced us to be late for our connection in Baltimore.  We were so concerned about making it that when we got to the next flight (which we just about made) we realized that my dad left our carry-on suitcase on the LAST flight.  I was going to die because that suitcase had everything in it including ALL my meds, medical records and my teddy.  My dad didn’t realize that the bag was missing until we were actually in the jet way and ready to actually step on the plane.  Talk about good timing, right?

 When my dad told me what he did, which was that he didn’t have the bag, I thought at first he was kidding with me because he has a knack of joking and pulling my leg.  But then when he kept saying it, I was like “you didn’t.”  My dad thought about running back to the gate of the last flight but it was so far that he thought he wouldn’t make it back and the flight would leave without him.  So the crew called over to the other plane in hopes that they would be able to retrieve the bag.   The pilot was even really nice to hold this plane up so that they could try to retrieve the other bag but unfortunately they couldn’t find it.  It was a black bag in the overhead bin with so many others… did I actually think they were going to find it?  You should have heard everyone on the plane though… they were pissed that the pilot was holding the plane because of ‘baggage problems.’ Little did they know it was because of us? I can’t blame them because if it was on the opposite foot, I probably would have been pissed too because who wants to be delayed… u know? 

 But even though they couldn’t retrieve the bag, they made calls all over to notify everyone about the ‘lost’ bag so that everyone in Baltimore, North Carolina, Buffalo, etc. knew about it before we even landed in New York.  When we landed and I went to the lost and found in New York and when I contacted each of the Lost and Found areas in Baltimore, North Carolina, and Buffalo, they all knew about it already and knew about what was in it.  I couldn’t really believe it.  I guess they all knew because they couldn’t take any chances with it considering it had medicines in it and everything.  It had everything though in it… my medicine, medical records, and my teddy.  There is a reason why I pack my medical records, medicine, and teddy in the carry-on suitcase, which is so that there is no chance whatsoever that they can get lost.  Well… now look what happened.  Even though I had more medicine in the house and I could always get a new Teddy even though I really loved this bear because my parents got it for me to go to all my treatments with me and had it engraved and was also the bear that I held to help my tummy pains, I was upset because my medical records were in there.  Even though my medical records were basically all on my computer and I could get another copy printed, it did have pictures of my body turning different colors, x-rays, etc. that were not copied and were irreplaceable and that was one reason why I was really upset that it was lost.  That is one of the major issues why I don’t want to go to the hospital today too because I don’t have my records to show and alert the doctors to all that happens with me because the pictures and such show everything. 

 ImageBy the time we got in the car to go home from the airport, the plane that we were originally on and that we left the baggage on had reached its next destination, which was Buffalo.  They had searched the plane again and my dad told them that he thinks that he left it in row 13 or so, which was extremely helpful.  We also told them exactly what was inside.  After all, who else has all that medicine in it and medical records?  We aren’t talking about little about of medicine either… so once you look inside… they could easily see it was my bag even though it didn’t have my name on the bag.  I kept saying to myself that if I could get my iPad back that I left on the plane after reporting it ‘lost,’ then someone would definitely turn in this bag.  But still… I wasn’t going to be 100% sure.  But luckily when we were on the way home, we got the phone call that the bag was found.  So it is on its way back to me even though I had to pay for it to be shipped. 

 In the meantime of the bag being lost though, I was really upset about also losing my bear because that bear was really important to me.  My parents bought me the bear and it went into every treatment with me.  It was engraved on the paw with a little message of ‘love’ from them and it was so very cute.  It was a VERMONT TEDDYEBAR and I loved it.  It even wore a snowsuit and was named FALBEAR.  This was the bear I held on to every night because it was the only thing that helped my stomach the most.  No other bear could do the trick.  So since I was so upset about losing it, my mom had ordered me a new one in the meantime to replace it. 

 ImageHowever, my mom ended up ordering me the same exact bear.  I couldn’t believe she did that.  I told her to order me one and at least name it FALBEAR2, but she said it didn’t fit, so she ended up naming it the same, which was FALBEAR.  I really hope that it is a little different like the fur or jumpsuit is a different color because I hope it isn’t identical because I would hate to have 2 exact bears, but it is the thought that counts anyway!  The bears can be identical twins.  They should both be here today since they are both being shipped ‘overnight,’ so we shall soon see what they look like and how much they match!

 I have finally come to some conclusions though.  Remember how I had to make decisions on my next plan of action because I didn’t know what to do in regards to whether I would go to Georgia to have the ketamine coma, go back to North Carolina to have the machine placed in me, or go to California to have the tubes put in me to try to ‘buy’ me time as well as have the surgeries to remove the stool that I am loaded up on and remove the obstruction and such?  I am still proceeding with the 8-day ketamine coma in North Carolina in November, but like I said in an earlier blog, I have to be off of all my meds… so it won’t be until then.  But I had to do something during the summer, and I had to decide what to do.  But I think I finally came to a decision. 

 I never thought I would be so certain on something.  I never thought I would be able to come to an answer and actually feel so sure about something.  But after the way I have been feeling lately and then after how I felt tonight, I have made a decision to go back to California for the surgeries.  I can’t take the pain in my stomach anymore.  I can’t take not being able to eat anymore.  Every time I eat I get into huge pains and it is torture. I can’t eat basically anything and the little that I do eat, I literally vomit up and I literally crawl into a ball on the couch in pain because it is so intense. I just honestly can’t take it anymore.  It is killing me.  I also can’t take not being able to go to the bathroom.  It is just getting too painful and exhausting trying to eat and go to the bathroom and doing all this.  I am already ‘blacking out’ too when I try to go to the bathroom.  In addition, I can’t even swallow.  I can’t swallow my food and I can’t swallow liquids or even pills.  It is only getting worse and if I can’t take it now… what am I going to do if I don’t do something because it is only going to get worse like I said. If my bloods are dropping and I am losing weight now, what is going to happen if I don’t have this surgery?  It is only going to worsen and I don’t think I can honestly afford for that to happen.  This is really warning signs and I am lucky that I am overcoming this now. We don’t know how long my luck will last.  You body can only suffer so much ‘trauma’ or be able to endure so much of low bloods and such. You know?  It is going to give out sooner or later.  So I really need to take care of this because it is getting so bad.  I got to do this I think before it is too late.

 Besides my body not being able to handle the overall situation with my weight and bloods being so very low, I don’t think I can handle the pain anymore either.  Like I just said… the eating is getting to be so excruciatingly painful and I can’t swallow anything.  So…. I think I reached my breaking point.  I think this needs to be taken care of.  It has to be really bad if I am thinking of the tubes and want the obstruction cleared up because I was really fighting it before because I didn’t want them.  I really was hoping to be as ‘normal’ as possible, and I was hoping that I wouldn’t have to end with tubes and such because I wouldn’t be able to eat.  If I got the tubes, eating would be done with and I was afraid that I would always be hungry since I couldn’t eat anything, as well as I was afraid that no one would want to go out with me because who would want to go out with me so that I could just ‘watch’ them eat. The tubes would bypass my stomach and go straight into my intestines and as a result, I would never feel full.  You feel full because food passes through your mouth and you swallow it, in addition to going into your stomach.  The reason you feel full and satisfied is because you brain registers this action and feels it in your stomach.  Since I won’t be able to put anything in my mouth, swallow, or have things in my stomach (it would go directly into my intestines), I would never feel full even though I would technically be full because I would be fed into my intestines.  So I would always have hungry stomach pains.  That was another reason I didn’t want the tubes… I wanted to be able to eat.  I didn’t want to stop ever eating food. I didn’t want to feel the ‘hunger’ pains and I didn’t want people to feel uncomfortable around me with just having me ‘watch’ them eat. 

 I also was hoping that I could get away with the tubes because I didn’t want to be the bionic woman.  I have had so many things robbed from me because of this illness, and I was hoping above all that I would at least be kinda normal in the fact I wouldn’t need tubes.  I already look weird because I discolor like a chameleon because of this illness.  I really didn’t want to have tubes protruding out of me on top of that too.  I would have tubes to put stuff in, as well as a vent (a tube to release gas because I become so distended because I am so paralyzed and can’t move the gas along).  I know it is probably for the better, but I was hoping deep down that possibly they would be able to fix this and I would be able to avoid these tubes. 

 I am also going to California to remove the obstruction.  I can’t take the pains from the obstruction anymore.  I was also scared about having this done because I was scared that I was going to have to end up getting a colostomy, but I just can’t take it anymore.  We don’t even know if it is an obstruction or a colon twist.  If it is a colon twist, then it is even a more emergency to have it done anyway.  The doctors are afraid that with all the gas and air that is in me that besides it putting all that pressure on my organs and shutting them down, it is going to twist my colon and it will end up in a real emergency.  So… at least now we will have that taken care of as well.  I have just reached my breaking point between everything and I can’t take it anymore.  Hopefully it won’t be a colon twist and it won’t be something major.  Hopefully I won’t even need a colostomy.  I am hoping that since I am having all this done at Stanford in California that it won’t have to end up in a colostomy and such because it is a top hospital in the nation and I am hoping that with a top surgeon working on me… they might be able to save me from having to get it.  After all… they don’t call the hospital Stanford and have the reputation of being one of the best hospitals in the nation for nothing.  U know?

 So I finally have made the decision to go to California.  I am going to probably call in the morning to finalize everything.  I finally reached my breaking point.  I just can’t go on like this.  I think it is more important to raise my weight and bloods because I can’t afford for them to drop anymore.  I see and feel exactly what is going on and it isn’t good.  I just can’t do it anymore and I feel what my body is going through and I honestly don’t think my body can go on much longer like this. So I kind of have no other choice.  I am also hoping that when I go for the surgeries that they will also give me high doses of ketamine because I will need it anyway when I undergo the surgery to help stop the disease from spreading.  So I am hoping that even though I have the surgery, I will get two for the price of one because the ketamine I will receive in result of the surgery will be an added bonus… something I definitely need and could use.  So hopefully I am making the right decision.

 So that appears like everything.  I think I told you everything.  I wanted to let you know the very latest as to what is happening with me, as well as what the upcoming plans are.  Like I said… it looks like I will be heading to California for the surgeries and then of course I will have the ketamine coma in November because I need to come off some of my medications, which I am hoping will be possible.

 I know I sound like a broken record already and a ‘crier’ but my family and I desperately need your help in trying to raise funds.  We really need help because treatment is very costly and we are having an extremely difficult time paying for it.  We can barely even pay our mortgage and even putting food on the table at times is hard.  Going to California is going to be extremely costly, and we really need your help if we definitely are going to make it possible.  Between the cost of the traveling, the time my dad will have to spend away from work (2 weeks) because there would be no income at that time, the cost of the hotel, the cost of the car so that my dad can get to and from the hospital each day, copayments, etc. it is going to amount to a lot of money because this trip is going to be over 2 weeks long.  I am already starting to calculate the cost of how much this trip is going to cost me and it is just going to be amazing.  Just being in the hospital is going to cost me $150 a day and $100 for each surgery/procedure/scan that I have because even though I have insurance coverage, I have to pay a copayment.

 It’s amazing that you pay so much for health insurance and it pays for diddley.  I guess I should be thankful though for what it does pay because it could always be a lot worse.  But you would think that the cost we pay for health insurance, which is not cheap, we would be totally covered and I would be able to afford the necessary treatment that I require.  But unfortunately health insurance is only good until you actually NEED it.  You know?  So we really need your help.  I know I am asking a lot, especially when the economy might not be so good.  However, if you can help me raise funds to help me raise money for my treatment in California in addition to my overall treatment that I need, I would really appreciate it.  Besides the treatment in California, I also have to worry about my other much needed treatment and still need to afford such as ketamine comas in New York (the ones I need every other week especially now since I am coming off my meds), appointments, medications, procedures, copayments, etc.  Like I said before, we are having problems even paying our mortgage… how are we going to afford all this… let alone this huge trip to California? Over 50% of our income is already handed over in copays and premiums.

I desperately need help raising funds and only hope that I will be able to raise the funds needed so that I will be able to continue the needed treatment I require. Ask yourself what it would feel like to be on fire. At the same time to have your hand slammed over and over with a brick. Normal light in the house feels like walking from a movie theater into a bright sunlight. You can’t eat-or you vomit and after a while… YOU BEGIN TO WASTE AWAY.  In addition, your teeth fall out and your “supportive friends” drift away… one by one. The only ones are at your fingertips-the few hours a day you can stand the light o the computer screen. You have one hand flush pink and warm to the touch, and in briefly touching the other, it feels like ice, is white as snow-but feels like fire.  You can’t even go to the ER because the nurse checking your pulse hurts and doctor exams throw you into a crescendo of pain that many (not all) cannot comprehend. These are only a few of the many reasons why I need treatment. 

 Any help that you can give me… even if it is just passing word of this website and bringing attention to it would be greatly appreciated. In many ways, my disease is the worst of both worlds: it’s a debilitating disease that’s both difficult and costly to treat.  But left untreated, it can cost me my life. So I really need as much help as I can get to raise funds before its too late. 

 Well… I guess I am going to rest.  I have had a busy and hectic day today.  Hopefully everything will simmer down soon.  I know it won’t go away, but hopefully at the very least that the spasms and crams will lessen once I get my bloods up a bit.  Please continue to pray for me.  Tomorrow I also have an appointment with the surgeon for my osteonecrosis.  So we will see what he has to say.  I will keep you posted.

Love,
Fallon

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November 18, 2013

ImageHi-

 As promised, I am writing to update you on what has happened during my trip to North Carolina.  What a trip this has been!  I must say that it definitely has been an experience.  But then again… what trip has not been an experience?  It’s so weird when we travel because everyone knows us in the airport.  It is so nice (but weird) how everyone knows us from people at the ticket counter to the people that push me in the wheelchair to the gate, to the security people, and to the people at the actual gate.  I guess when you travel so much and when you look as sickly as I do, it is hard to forget me. 

 Before we actually arrived at our final destination in North Carolina, I was thinking that this trip to North Carolina wasn’t too bad because the actual traveling time wasn’t so bad compared to all the other trips that dad and I have been taking. I mean dad and I have been used to going to places that would take close to the entire day to travel such as going to California and Minnesota.  We were used to going to places that even required a time change.  But this trip only required us to travel for 3-½ hrs. to get to North Carolina and at least we were in the same time zone.  It was big difference.

 I thought it was an easy trip until we actually arrived in North Carolina.  However, the airport that we had to land at was an airport that was quite a distance from our destination that we needed and as a result, we had to take a private plane to get to our final destination in North Carolina, which was an additional hour on top of the already 3 ½ hrs.  Little did I know what I was going to be in for in these private planes? 

 I was shocked to be honest with you about how I was going to get from Raleigh to our final destination in North Carolina in the private plane.  I looked at the plane and I was like “how am I ever going to get in there?” But I had no fear because my dad came to the rescue like always and was able to pick me up and put me into the plane.  I can’t believe that he managed to get me in there to be honest with you.

 What a trip it is to be in a private plane.  I must say that it is definitely an experience.  No wonder they ask you your weight and they have weight requirements. You can basically feel anything and everything.  We had to wear these headphones that provided not only a way of muffling out the noise, but also a way to talk to each other. However, it definitely wasn’t like traveling on a commercial airline and as a result, my illness really kicked up.

ImageTraveling is extremely difficult on me no matter how I travel.  However, traveling on that small plane really killed me because of the ‘crampness’ and because of how there was no air-conditioning really.  It was a really hot day and with someone with my disease, it was not a good combination.  I have severe autonomic dysfunction and as a result, I cannot sweat even if I get hot and I end up overheating.  Therefore, when I was on the plane, I literally almost passed out because of the heat.  My illness really acted up because of the intense heat and I kept ‘fading’ in and out.  My dad was really worried about me because I just couldn’t cool down.  If we didn’t land when we did and get me into someplace ‘cool’ … I honestly think I would have died… and I am not kidding.

 Being on that private plane and having my illness act up especially because of the heat really killed me and as a result, my disease really took off for the rest of the day.  For the remainder of the day, I was extremely weak and couldn’t move.  I was having trouble breathing.  I was in lots of pain.  I was also very cold and couldn’t warm up once they cooled me down.  My dad was really worried about me and kept asking me if I wanted to go to the hospital.  But I figured I would just hold out and hope that this would pass.  My dad always takes terrific care of me and makes sure that I am ok.  Even if I am sick and not wanting to eat, he makes sure though that I get up and eat. 

 ImageI am so fortunate that my dad took me this weekend, especially since it was Father’s Day.  Even though we couldn’t really have a ‘real’ Father’s Day with a BBQ like we always do, I tried to make it as special as I could.  At least I got to spend the day with my dad and that is all that count.  In fact, when we went out for dinner, I told him that he should order himself something ‘good’ on the menu because it was ‘Father’s Day.’ My dad always chooses the cheapest thing because of the issue with the money, but I figured that since it was his holiday, he deserved to ‘treat’ himself. But even though he did try to treat himself this time, he ended up not liking what he ordered and suffering in the end because it came with couscous and such and he didn’t realize it.  He is not a fan of that.  So the one time he actually spent money on himself… he wasn’t thrilled with his meal.  But not to worry… he had my meal to eat too because I barely ate.  I just wish I could have made his Father’s Day more special because he certainly deserved it. 

 I saw the doctor today.  So of course he has his game plan.  What a game plan it is!  As you know, we went to see this doctor because he was supposed to put me into the ketamine coma that I needed for about a week because I need a more intensive coma than the one I am getting in New York.  However, even though this doctor is willing to do it, I just hope that I make it that long because he has a whole protocol for me to do in order for me to have it.  When I do undergo it, I will have it in the ICU for 7 days and my dad will literally have to spend the entire time with me in there.  They said that my dad literally “moves” in with me because I need a family member with me 24/7 in order to have the coma. The reason is because it is really risky and because ketamine can give you severe hallucinations.  If there is a complication, I need him there.  Plus, if I float in and out of consciousness, it will be helpful to see a familiar face there, especially with the hallucinations. So I feel better knowing that my dad will be there all the time with me. 

 The doctor said in order for me to have the ketamine coma for 7 days, I will have to be off most of my medications because the ketamine that they will give me will ‘interact’ with the medications and I won’t get the full benefits.  However, the medications that I am taking are quite a lot and I am not on a little dose either. I take over 50 pills daily and with a high dose of the medications, you can imagine how long it is going to take to come off of those meds.  Plus… who even knows how my body will function without those meds because there is a reason why I am on those medications in the first place.

 Some of the medications that I have to be off of are painkillers and it scares me to even think that I won’t be on any.  I am in so much pain as it is and to think of the possibility of being in more pain, I just don’t know how I am going to handle it. I suffer 24/7 with pain and it is the most excruciating pain out there.  After all, it was shown that on the pain scale, it ranks as one of the most painful diseases.  It has a score of 42 out of 50 on the McGill Pain Index.  In comparison… Arthritis pain is ranked about an 18, Cancer pain is 24, and Chronic Back Pain a 26! The only thing close to RSD pain is the amputation of a finger and that is quick whereas my illness is 24 hours a day, 7 days a week.  So if all these medications are doing something, I would hate to feel what it is like if they weren’t.  The doctor seems to think that these medications aren’t making that much of a difference in me anymore and therefore, I will be able to come off of them. 

 Since I have to be free from all these medications, I have to be ‘weaned’ from them.  I cannot just stop them abruptly because it can cause me to go straight into cardiac arrest.  So in order for me to do this and be weaned in a ‘safe’ manner, I am looking into having the ketamine coma from this doctor in November.  I don’t honestly know if I can make it that long.  November is a long way off and I am rapidly deteriorating.  I cannot eat, drink, my organs are shutting down, I am in tremendous pain, I can’t go to the bathroom, I can’t swallow, etc. and therefore, I don’t even know if I have the time to wait until November.  Plus, I don’t even know if it is a good idea to wait until then because I can have it then in November and it not even work too.  Then I would have waited all this time for nothing and also wasted this precious time as well.  So we are thinking of other options.

 Also during this time, the doctor is thinking of putting in another machine into me.  I had a machine in me a few years ago, but it failed.  It didn’t work in me and as a result, it had to be removed.  However, the doctor claimed that it was a Medtronic system and that the machines have changed quite some in the time since I have had it and as a result, he said the new machine might work in me using Boston Scientific instead of Medtronic.  The new system would be able to control all four limbs because it will have leads to basically all over my body whereas the Medtronic system only controlled my legs.  But knowing that I failed the machines once, I honestly don’t know if I want to go down this path again.  After all, surgery isn’t the easiest thing on me and exacerbates my illness.  Plus having foreign equipment in me will definitely make my illness completely worse too.  So I just don’t know if I want to go down that route again since I had it already.

 If I did go down that route, the doctor said that I would need a psych evaluation and after getting clearance, I will return to North Carolina for them to insert the machine.  At this time it would be external because it would be considered a ‘trial.’  He would then allow me to go home for about a week and see if the machine made a difference.  After about a week at home, I will then have to return to North Carolina to either have the machine removed or implanted permanently.  If implanted, I will have to spend about a week in North Carolina because it is intensive surgery.  They said that the battery will go into my abdomen even though it probably would be very prominent because of how thin I am.  Not only will the surgery probably take a huge toll on my body, but all that traveling probably will wreak havoc on me as well.  We aren’t just talking about one trip.  We are talking about going back and forth multiple times to get this stimulator in.  But, we have no other choice because it has to be ‘trialed’ before it is implanted and the doctor wants me in my home environment and such to see how it does.

 So I have a lot to decide on. I don’t know if I should undergo the stimulator or not.  Plus, I don’t honestly know if I should wait to have this ketamine coma in November because I honestly don’t know if I am going to make it that long.  Like I said too, we don’t even know what the coma is going to ‘fix’ and it would stink to wait all that time and find out that it didn’t do as much as we hoped.  We would have wasted precious time because I am deteriorating and getting worse in the meantime.  Yet, the doctor I saw today said that it might take the mix of the machines and ketamine coma to make a difference. 

 I am supposed to be going to California in July to be ‘tubed’ and to try to buy time.  Since I am deteriorating and losing weight and such, I was heading to California so that they could try to buy time by ‘feeding’ me and trying to work something out for my GI tract.  They were going to try to put a tube into my intestines and try to find a small part that was still “alive” and be able to feed me.  They were also wanting to put in a ‘vent’ to let out the gas since I can’t expel the gas on my own, which leads to severe bloating and distension.  I literally look like I am 9 months pregnant at times and ready to give birth.  However, now with this news that we received in North Carolina, everything is now all messed up.

 If if I go and get the machines put in me, there is no way that I can go to California.  So I have to decide between going to California and getting ‘tubed’ or do I go and get the machines.  I have no idea which will benefit me more because I don’t know in the end if the coma is going to help my GI system.  It would stink to wait until November and find out that it didn’t help my GI system because I really don’t have that much time to waste especially since I already weigh in the 60s and have a BMI of 10.8.  I can’t really afford to go much lower.  I definitely won’t make it to wait until after November and then first work on the GI issues because as it is I can’t swallow, eat, go to the bathroom, keep weight on, etc.

 There is another possibility but I am not sure if we are going to go down this route.  There is another doctor willing to do the ketamine coma on me in Georgia.  I have spoken to him on the phone and he seems quite nice and such, but I don’t know who is the better doctor… him or the doctor we saw in North Carolina.  If I go to the doctor in Georgia, I won’t have to stop my medications and as a result, I would be able to have the coma now rather than have to wait to November.  But the reason that that I am having to wait that long is because the doctor in North Carolina is insisting that my medication will interact with the ketamine and I won’t get the full benefit of it and it won’t work as it should.  So who is right?  I would hate to go for the coma in Georgia now if it isn’t going to work.  You know?  But I would hate to also wait that long to November to have the coma because I don’t have that much time to wait.

 In addition, the doctor in Georgia is wiling to give me ketamine injections into the actual nerves as well.  They are like spinal blocks but instead of using steroids, he uses ketamine. So it is more beneficial and it will help me because it gets to the very core of the nerves.  In addition, he is willing to work on my GI tract as well, whereas the doctor in North Carolina isn’t.  The doctor in Georgia wants to do a celiac plexus block but instead of using steroids, he wants to use ketamine as well right into the bundle of nerves located behind the stomach and in front of the diaphragm.  The celiac plexus innervates a number of organs including stomach, gallbladder, kidneys, liver, pancreas, adrenal glands and blood vessels. A celiac plexus block can improve pain symptoms from any of these organs and it is hopeful that along with the ketamine that it will help me.  The doctor is also willing to put in a ketamine pump in me so that I can go home after the coma and still get ketamine 24/7, as well as a nasal spray ketamine to get instantaneous relief if needed.  I just don’t know what to do because each doctor has his or her own plan and I am so confused as to which doctor is the better doctor.  I have tried to do some research to see if the medications that I am on actually cause the ketamine to have less effects and not work compared to when there is no medication in the body and I can’t find anything about it.

 So I really don’t know what to do.  I really have to decide though which route I am going to take because like I said… there is only one way that I can go.  I can either go to North Carolina to have the machine put in me, go to California to have the tubes put in me and ‘buy’ time, or I can try that other ketamine doctor in Georgia.  I just don’t know the right way to go.  I was thinking though to try to come off my medications so that I can still have the ketamine coma in November if by any chance I go for any of these above procedures and they don’t work.  At least if I do hopefully make it to November, I will be able to have that coma as well and give it a try because I will be off the meds.  I know I am extremely fearful to come off the medications because I am in so much excruciating pain as it is, I guess it can’t hurt it try.  Worse comes to worse is that it just can’t be done and I go right back on them, right?  In addition, hopefully the ketamine comas that I receive in New York will be extremely helpful in helping me stay off the medications because even though I only get them for the day, hopefully it will help control my pain and suffering to some extent since I do get them every other week.

 So that seems to be the game plan.  I think I am going to call the doctor in Georgia tomorrow and see what he has to say.  I really don’t know which is the better option but I do know one thing for certain… I know I can’t wait to November and do nothing in the meantime.  All the doctors have even confirmed that I would never make it.

 So we are all packed and ready to go home tomorrow morning.  We have to take another private plane back to the main airport, but it shouldn’t be so bad. I am hoping it will be a bit easier because we are leaving at 6 AM and it shouldn’t be so hot then.  I just can’t wait to get home and see my mom and animals.  I miss them.  Even though it has been a wonderful time being with my dad who is not only my dad but also my best friend, I do miss my mom. 

 Well… going to get going.  I guess I have plenty to think of.  If you ever have any suggestions or comments, please feel free to contact me at Spunkyfal@aol.com. In the meantime, I still need to continue my current treatment protocol and ketamine comas in New York are going to be even more important especially if I am coming off the medications since they will hopefully be the only thing replacing the medications that I am coming off.  However, in order to have these needed treatments and ketamine comas, many donations and funds are needed.  If you can think of any ways of raising these funds, I would appreciate it.  Thanks again for all your continued support and encouragement.  It really hasn’t been easy and if I didn’t have your support, I probably wouldn’t have made it as far as I have. 

 Love, 

Fallon

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June 15, 2013

ImageHey-

 Guess if another blog is being posted it only means one thing… there is news to be said.  I also wanted to update you to let you know the latest because I am leaving tomorrow.  Yup… another trip.  We are headed to North Carolina and hoping to hear some good news.  I could really use it because things are getting horrendous.  I don’t honestly know how much I can hang on. 

 To tell you the absolute truth… something really needs to be done and done quickly.  I know I have been saying this for a while, but I can honestly say that I can actually feel the ‘pressure’ more than ever for something to be done quickly because my body just feels like it wants to ‘give out.’  I have been able to hold on for so long and I have been able to go on despite hearing how badly I am doing and despite all the deteriorating that has been happening, but I have to admit that I am getting to the point that I am just giving up.  I hurt so very badly and I am so very weak.  My little body just can’t take it anymore.  It has gotten to the point to be honest that sometimes instead of wondering if I am going to make it to morning, I actually plead to ‘please take me already’ because I am suffering so much already.

 The suffering is so intense.  I don’t get a moments rest and I guess after suffering for so long and never getting a break, it is no wonder that I am at my breaking point.  There is only so much a person can take.  However, my body isn’t as strong as it once was.  Whereas I was deteriorating before, I was still ‘strong’ enough to overcome all that I was going through and pull through it all.  However, I fear that this isn’t the case anymore.  I am just getting so weak and tired that it is even just a big deal to open my eyes and get out of bed. 

 I honestly don’t know how much my body can take.  The pain and suffering is getting worse and so is the weakness.  I am getting so very nauseous even more than ever that it is making it literally impossible to eat.  Even swallowing is becoming impossible.  The very few things I used to eat and drink have become a big ordeal to take in because the disease is really affecting my swallowing mechanism and digestive tract. The few things that I used to eat and drink like egg whites, ices, etc. are all too hard to swallow now and get down.  I can’t even get down regular fluids.  It is also getting impossible to take my medicine, which is not a good thing considering I take medicine for breakfast, lunch, and dinner, as well as snacks.  I basically take over 50 pills a day and need to take them in order to even somewhat make it through the day.  Yet it is getting harder and harder to swallow. 

 In addition, I have a severe obstruction that really needs to be taken care of.  We aren’t sure if the obstruction is just a plain obstruction or if it is a twist of the colon.  The doctors were always fearful that the colon was going to twist because of all the air buildup in my body, but something has definitely occurred.  We knew that there was so much air built up in my body that it was exerting a lot of pressure on all my organs and causing them to fail, so the doctors were always afraid it was going to cause the colon to twist, which would of course lead to a huge emergency.

 Yet, the doctors are hesitant to do anything.  So many things need to be done and if they start operating on one thing, it is going to set off a whole domino theory.  Therefore, I need to have everything in place and have everything done in a certain order.  So it isn’t like I can just have this obstruction taken care of just like that.  I can’t even have the doctors in the area taken care of it because I need specialists since I am so very complicated.  Not many doctors will even ‘touch’ me because of my medical history and how much I am medical risk and as a result, I will have to travel to California or Mayo or to Hopkins to have this surgery performed.  Of course everything costs money as well including traveling expenses, which unfortunately we don’t have.

 I am also at the point where I can barely even go to the bathroom.  Between my GI tract shutting down and me weakening and deteriorating, I just don’t have the ability to really go to the bathroom.  It just takes so much out of me to even go to the bathroom and it results a lot of times in me ‘blacking out.’  It is really uncomfortable and scary.

 In addition, the osteonecrosis has also gotten a lot worse as well.  My bones in my mouth are protruding worse than ever in my mouth because they are ‘dying’ off.  I am also getting more lesions occurring spontaneously, which is also exposing the bone.  Not only are these lesions and bone appearing though, but they are also extremely painful, which makes eating and drinking even more difficult.

 I was supposed to see the surgeon for the osteonecrosis in July, but since I have gotten severely worse, the surgeon has made the appointment for this Thursday instead.  Hopefully something will be done because it is really causing a lot of problems and if it isn’t treated, it will only worsen.  In addition, I am having the problem that all the surgeons that can treat this rare condition do not take my health insurance.  Like that is a surprise, right?  I spend so much on health insurance and yet when I need it, it is never any good.  Anyway, I really need to find a way of raising funds because I desperately need surgery and to see the surgeon to take care of this immediately. I have spoke to my other doctors and they said that this must be taken care of immediately because unfortunately, there is no clear proof showing the best way to treat osteonecrosis, but starting treatment early—before collapse of bone—is best. It also needs to be treated because having dead bone in your body of course is never any good.  Yet, like I said… it all depends on the funds I raise because no one is going to do it for ‘free’ and unfortunately our hands are tied for money.  We don’t even have money to pay for my other treatment, how are we going to now pay for this? It just keeps adding up.

 We also have to make up our mind what to do about the rest of my body.  The doctors are unsure what to do because I need a bone infusion that I get every year because my bones are so very weak.  I literally can have a life-threatening fracture at any time and as a result, I have been getting bone infusions on a yearly basis for the past 4 years.  However, the doctors are thinking that these bisphosphonate infusions could partially be responsible for causing the osteonecrosis and as a result, they are hesitant to give it to me again.  They have been giving me the bisphosphonates because Bisphosphonates have been widely used in the management of my osteoporosis and metabolic bone disease. They have proven to be effective in reducing the risk of fracture and have recently been shown to improve mortality.  However, I desperately need it as well because without it, my other bones in the body will further deteriorate and I will be so prone to getting fractures.  As it is already… my bones have been deteriorating and are so very weak with the infusions.  Without the infusions, they would literally collapse.   So we really need to make some decisions as to what to do.  I have an appointment to discuss the infusion in the middle of July.

 I have also been thinking and I realized how badly I want to get well.  I never wanted to get well so bad.  Not only do I want to get out of all my pain and suffering because I can’t take it much longer, but I hate watching this disease rob everything from me.  I hate watching everything that I had such as the ability to walk, eat, even how well my brain function, etc. be taken away.  So many things that people take for granted and that they never in their life think that they would lose has been taken from me.   

 I don’t even look normal anymore.  On the outside, my feet, legs, hands and arms turn a rainbow of colors. The longer my legs are hanging off the edge of a chair, or just standing up, the darker the color gets. My skin is very thin and it is very easy to drawn blood from it because of the thinness of it.  I also have extremely dry skin that used to be “as soft as a baby.”

 Sensitivity is the worst that nothing can touch me… even the lightest touch. I can’t even enjoy the hugs from people because of how sensitive I am.  Not only do I hurt if I someone even touches me, but even if someone is warm and comes near me, I am so hypersensitive that I can feel the warmth radiating from their body.  If you think that is bad… bumping against a table or wall wouldn’t hurt a “normal” person, but it can bring tears to my eyes, doubling me over in pain.   It just always feels like my bones have just snapped in half or been crushed.

 I can feel the weather changing. Muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out.  I don’t even get to go outside, as I have become a human weather station.  I can feel the slightest change in temperature, humidity, etc. and the most gentlest breeze, rain, snow, etc. greatly affects me and causes me great harm.  I am tired of sitting back and feeling isolated.  I am tired of sitting back and watching everyone live their life and I am going in the opposite direction.  It just isn’t fair anymore.

 ImageI keep wondering what I did to deserve this?  I would do anything to get well at this point.  It isn’t fair what I put my family through, as they have become prisoners of this illness as well.  They may not be feeling this illness physically like I do, but they are going through it emotionally.  They have given up so much for me such as money, going out to eat, going on vacations, etc.  I can’t even remember the last time we did such a thing.  What I would do to be able to live my life!!

 ImageI want to get well so badly.  Not only do I want to get well so badly so I can become a doctor and help others in need and live out my dreams, but I want to be able to have a husband, kids, and a family. I also want to give back to my family their lives because they certainly don’t deserve to be going through this.  Thank goodness I have my animals.  If I didn’t have my dog, cat, and turtle… I probably wouldn’t have anyone. You really learn who your true friends and family are when you become ill. 

 I have also been doing a lot of thinking because I have to make a decision where I am going to have surgery done.  Both the Mayo Clinic and the Stanford Hospital in California want to perform surgery on me.  Unfortunately, I cannot receive any treatment in the local area because of my complicated condition and it takes going to these top hospitals in the nation to get help, which costs even more money on our part because we have to not only factor in the medical costs but also the traveling expenses.  But it is a necessity that we go to these hospitals because they are the best in the country and the only hospitals with the knowledge of my illnesses.  They are also the only ones willing to touch me. You can’t imagine how many times I have been to a doctor and besides them not knowing what to do, they don’t even want to touch me because I am a ‘liability’ or I am too difficult of a case.

 Thankfully I have doctors at the Mayo Clinic and the Stanford hospital willing and able to take on my case. Even though we don’t know if it will necessarily ‘help,’ at least it is a possibility that there can be some hope that I can get better and get some kind of treatment to help me live.  But of course I needed to decide which hospital to have the surgery at because both hospitals had their pros and cons. 

 I have spent a serious amount of time thinking where to have the surgeries performed and I think I decided to have it done in California despite the fact that it is further away from home and probably would be a bit more expensive.  I really think that I would get the better care at that hospital.  I am not 100% sure that I am going to have the surgery there and not at the Mayo Clinic, but that is where I am leaning towards.  I will know for certain after this weekend when we find out what is happening in North Carolina.

 Although it will be a little more expensive in California than at the Mayo Clinic because of various expenses such as the hotel being a little bit more costly, having to rent out a car because there is no way to get to and from the hospital in California without one (at the Mayo everything is connected by tunnels or by a shuttle system), etc., I really think I will get better treatment there. I feel more comfortable there and I think I need to go where I am more comfortable.  After speaking to my dad, he also feels the same way. So I am glad I am not the only person having these feelings.  After meeting with both doctors and hearing what both have to offer me, I feel like the doctors in California are more capable and have better bedside manners than the doctors at the Mayo Clinic.

 It is important to go to a hospital where you feel like you get the best care from doctors, and I feel that would probably be in California.  In the past, whenever I called a doctor in California with a question, I had my actual doctor call me back.  However, when I call the Mayo Clinic, I never hear from the actual doctor even though I ask for him/her to call me back. Instead, I always get a nurse or someone else.  I also feel like California is trying to treat the overall condition and trying to help the overall picture to get me well.  On the other hand, Mayo is just kinda concerned with putting weight on me.  The doctors at the Mayo Clinic kinda flipped out over my weight and BMI being 10.8, as they never saw someone so sickly and weighing so little. No matter what other problems that I may have, they kinda were pushing them on the back burner and just focusing on raising the number.  They are just concerned with raising the number at whatever cost.  Yet, they don’t realize that it isn’t that simple.

 It is the doctors at California who I think better understand the overall picture.  They understand that it isn’t so easy to just ‘raise’ the number.  If left up to Mayo… I think they would just put tubes in me everywhere to just to raise the number. They would do whatever it takes to do it even if it sets off my other diseases such as my Reflex Sympathetic Dystrophy and/or autonomic dysfunction, which it probably would do so because anything traumatic or foreign in me will do.  After all, Mayo even said they will put one tube in after another and if all fails then they will do everything through a central line and such.  They don’t realize the price that I am going to have to pay for all these tubes and surgeries.

 On the other hand, California actually understands that you can’t just put tubes in me without starting off my other illnesses.  They understand that they have to weigh each thought before proceeding because nothing comes without risks.  Even though they too want to raise the number and get me to gain weight, they will not do it if it is going to make me worse.  I think that the doctors in Cali will ‘think’ more before they act, which is something that is a necessity with my illness.  After all, one bad move and it could really cost me my life easily.  In addition, they don’t realize that setting off the disease in one area of the body can easily set off the disease all throughout my body.  For example, spasms are worst in my left leg, but the right leg will jump in on the action if the other one gets going.

 I also love my GI team in California.  There is no other doctor who is better than Dr. Winter.  He is from South Africa and he is one amazing doctor.  I really think that if anyone can get me well, it is him. When I am with him, I really feel like we are all part of a ‘team’ in trying to beat this illness.  At the Mayo… I didn’t get that “all for one” feeling nor did I feel like I was part of it.  I felt more like a patient with no say at the Mayo than someone part of a ‘team’ like at Cali.  After all, with my illness, I need to be listened to because if they don’t and end up doing something to ‘hurt’ me, it can result in a horrific outcome. 

 I also decided to go with California because the Mayo Clinic said that even though they might be able to help me while I am there, they don’t know if they really had a ‘long-term’ solution.  They felt that I would really need the radical multivisceral organ transplant, which entails getting a new stomach, liver, small and large intestine, and pancreas, which of course they don’t.  At least if I went to California, I feel like they are working in getting a ‘overall’ solution and a ‘long-term’ solution even if it ends up being the transplant. This hospital in California is one of the 6 hospitals in the country that does this rare, radical, and risky surgery.  So at least I will be in good hands.   

But I don’t know the exact date of the surgery in California until we finish up in North Carolina.    Even though I know how desperately I need the surgery in California, I am not sure if it is going to occur before or after I go for the huge ketamine coma in North Carolina.  In California, they will be planning to basically ‘unload’ me since I am all loaded up on stool.  My GI tract is all shut down and as a result I am basically all loaded up with stool (I have pounds and pounds of stool and basically the little weight I am is a ‘false’ weight because it is made up of all this stool.  I am terrified to actually know my REAL weight because I already weigh in the 60s).  I will also be getting a tube into my intestines to try to feed and ‘buy’ me time. Even though my intestines are paralyzed, they are going to try to find a viable portion… even if it is the tiniest piece so that they could get some food into me.  They are also planning on possibly putting a vent in me because I build up with gas and become distended since it can’t move.  When I have the ‘vent’ I will be able to open it up and let the gas out instead of walking around looking like I am 9 months pregnant and ready give birth.  They are also thinking of putting in a central line because since I am getting so very sick, they want to have a way to access me better in case of an emergency.  It will also be better than sticking me because my veins are starting to fail.  Finally, the doctors in California will also deal with this ‘obstruction’ that is happening.  I am only praying it doesn’t result in a colostomy. I don’t know how I am going to manage if I had to get one.  It is like they are trying to make me the bionic woman. I am just going to have artificial means in me everywhere.  It is like I am not going to be human!  Hopefully it won’t come down to all this. But we won’t know all the details until we get there.  Perhaps some of this stuff won’t even have to be thought of or have to be an option because the ketamine coma will ‘reverse’ or ‘fix’ some of this stuff if I happen to undergo the coma beforehand.

 Speaking of the ketamine coma… I am off tomorrow for North Carolina.  Even though I won’t be getting the ketamine during this trip, we are going to be finalizing everything and going over all the details so that we can do it.  After all, receiving this treatment of going to have a ketamine coma isn’t a ‘everyday procedure’ nor does it come without risks.  Therefore, the doctor wants to make sure that all the t’s are crossed and the I’s are dotted before anything.  We have to all be on the same page before anything.  The doctor doesn’t want to be in for any surprises.

 Ketamine has a strong ability to block NMDA receptors. The hypothesis is that ketamine blocks NMDA receptors that might reboot aberrant brain activity. It is believed that prolonged infusion of Ketamine appears to maintain a level of Ketamine in the central nervous system long enough to reverse the effects of the sensitization process and associated pain.  Even though I have been undergoing ketamine in New York every other week, I have only been having it for the day and not nearly at a dose needed to do this.  In order for ketamine to reverse or help me, I would need to have a much larger dose and for an extended amount of time.  As a result, we are head to North Carolina to have it done.

 So dad and I are going to spend Father’s Day going to North Carolina.  It certainly is going to be an experience.  Not only are we taking a commercial flight, but in order to get to our final destination, we need to take a private plane.  I have never been on a private plane before and either has my dad.  It is much different than going on a commercial flight because on a private plane there is a weight requirement and such.  I told my dad that he better not gain any weight because the plane will never go up.  I must say though that I am really excited to go on this plane.  I will definitely be taking pictures.

 Since we won’t be home for Father’s Day, we are going to be celebrating Father’s Day today.  I bought him a special cake from Carvel.  One thing about my dad and me is that we love our ice cream.  Every night we have our dessert together and we can’t go to sleep without having our ice cream. We can miss dinner and not eat other things… but ice cream is a MUST.  As a result, I got him a nice ice-cream cake.  I didn’t get him the traditional Father’s Day cake though because it was too big and since we weren’t going to be around I figured that it wasn’t worth it.  After all, the traditional Father’s Day cake was shaped in a whale and I thought it was no big deal to get him a smaller cake that would have no leftovers.  Big whoop if it was a square cake instead of a whale, right?  I did make sure though that the cake was covered in hot fudge.  I don’t think we ever had a cake with the entire cover of the cake being covered in hot fudge.  We will see how much he likes it tonight.  He just better not eat a lot because we have to fly tomorrow and like I said… there is that weight requirement.  LOL. 

I didn’t really know what to get my dad for this special day.  So I figured that since we will be going away a lot to hospitals, the best thing that I can give him are new shirts.  He really didn’t have any and he normally doesn’t buy himself anything.  So I figured I would help him out and buy it for him.  I also bought him a Bluetooth adapter for his cellphone for his car.  I bought it for him so that he wouldn’t get a ticket since it is illegal to drive with your phone in your hands and unfortunately my dad has an old car that doesn’t have Bluetooth installed in the car already.  Since I am always on the phone with him anyway, I didn’t want him to risk getting a ticket.  So I bought him the Bluetooth so he could talk and not worry. 

I have the absolute best dad in the world.  Even though we really won’t get to celebrate Father’s Day how we always do with a day of R & R for dad and him barbequing, at least I will get to spend the day with him.  Even though I hate to travel and it really exhausts and takes a lot out of me, I do have to say that I love being with my dad and I treasure every moment I am with him.  My dad is not only my dad, but he is my hero, my knight and shining armor, and my best friend.  I definitely would not be here if it wasn’t for him.  He is the one who keeps me going.

Wanna hear something funny?  Things always happen when you can’t afford for them to happen because there is no time for it.  Well, my makeup ended up falling behind my furniture today because it fell out of my hands.  I live for my makeup because I hate looking so ‘sickly.’  At least with makeup, I have learned to look my best and to conceal how ill I really look.  The cosmetologists have showed me how to hide all the ‘bad’ and how to look my best because when you look good… you feel good.  Plus, I don’t want people to see how ‘sick’ I really am. So when I lost my makeup behind my furniture, I literally freaked because I knew that it was gone because there was no way of getting it.  I have the type of furniture that goes around my entire room and one piece is connected to the next piece and all pieces are not only screwed together, but they are screwed to the wall.  My dad knew how much I wanted the makeup, so he volunteered to take apart my furniture.  I was like “no way!  I will just buy new.”  Thank goodness my dad took me to buy new today so I would have it for my trip because if my dad ended up taking apart my furniture just for that makeup, I probably would have to end up getting new furniture too in the end.  To take apart all that furniture just for makeup… it was ludicrous. 

Well… I guess I better get going.  I just wanted to update you and let you also know that we are leaving tomorrow for North Carolina.  Of course I will update you again when I know more and especially after I get all my info when I meet with the doc on Monday. 

Thanks again for continuing to support me.  Like always, I really need your help because I need lots of upcoming treatment and it doesn’t come “free!”  Donations are much needed and so are prayers, so please spread the word and bring attention to my website so that I can hopefully overcome my illnesses and become the doctor that I have the ambition to be so that I can help others. Any help that you can do will be much appreciated!! I don’t wanna die!!

 Love,

Fallon

 

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June 9, 2013

ImageHey-

 I bet you weren’t expecting another update so soon. Well to tell you the honest truth, I wasn’t honestly expecting to write one either so soon but a big thing has happened and I figured I would let you know about it.  It is also a huge thing to ‘swallow’ so I figured that if I wrote about it, maybe it would make some more sense to me and maybe I can get a better grip on all that is going on.  I am just in total bewilderment with everything that is happening, especially with the news I was given tonight.

 I guess I will start with the biggest news that I was given tonight. It is amazing that every time I think I have everything figured out or that the doctors have officially finished diagnosing me with everything that could possibly be wrong with me, they always find something else.  It is amazing how I am sick with so many illnesses and yet, they always seem to find something else wrong.  I feel like I am from “Ripley’s Believe It or Not” because how much can a person have wrong with him or her?  I mean this is ludicrous!

 I am so young too and I am suffering so much.  I am diagnosed with such rare and life-threatening diseases that unfortunately have no known cures.  I have been diagnosed with a neurological disease called Reflex Sympathetic Dystrophy, Autonomic Dysfunction, severe gastroparesis (actually acute intestinal pseudo obstruction), a pituitary brain tumor, osteonecrosis, and severe bradycardia.  I also have a lot of other issues going on with my body, but they are all related to these other major conditions, as they are results of my body being affected with these illnesses and ‘shutting’ down.  However, never would I think that I could be diagnosed with something else in addition to all that.

 After speaking to the doctor tonight, he said he reviewed all my records and he honestly thinks that in addition to all that I have going on with me, he thinks that I also have a connective tissue disorder going on called Ehlers-Danlos Syndrome.  It is also a rare disease that currently has no known cure.  After reading more and more about this illness and being told about it from the doctor, I am thinking more and more that it describes me.  So could this be in the boiling cauldron of things that are wrong with me as well?  I just don’t know.  I guess the only way that we will know definitively is to go to a geneticist and to have me tested to see if I am. 

 Ehlers-Danlos syndrome is a group of inherited disorders that affects your connective tissues — primarily your skin, joints and blood vessel walls. When you have this syndrome, it results in overly flexible joints ad stretchy, fragile skin.  This syndrome is very dangerous because it can cause the fatal rupture of blood vessels including the walls of my blood vessels, intestines, or uterus to rupture.  This illness also causes severe dislocations because the joints pop in and out because of extreme flexibility and loose joints, as well as abnormal scar formation and wound healing.  It also results in soft and stretchy skin that bruises easily.  This is just one horrible disease to have especially when you have Reflex Sympathetic Dystrophy because they are nemesis of each other.  They work hand-in-hand to worsen each other and to make me in even worse condition. It is like a never ending cycle because the Ehler-Danlos syndrome causes all this bruising and trouble with wound healing and such, which spreads and exacerbates the Reflex Sympathetic Dystrophy.  However, it is not 100% confirmed that I have this illness on top of everything else, so I am not going to jump to any conclusions.  They are thinking about sending me to a geneticist to investigate as well because genetic tests on a sample of your blood can confirm the diagnosis in some cases and help rule out other problems.

 There are a variety of genetic causes that can cause this illness and some of these causes are inherited and passed on from parent to child.  The more we have been learning about this illness, the more we tend to think my mom possibly could have this illness to and could have passed it to me even though she definitely didn’t have it in this severe form.  We just found some symptoms that this disease has that my mom has had, so we are thinking that possibly she has had this disease all this time and could have passed it to me even though she wasn’t as sick with this disease as I am. After all, there’s a 50 percent chance that a parent will pass the gene on to each of their children.

 Of course this disease doesn’t come with pain too.  So in addition to all the other severe pain that I am already in because of the Reflex Sympathetic Dystrophy, Autonomic Dysfunction, Osteonecrosis, etc. I now have to deal with all this pain too.  So it is just so much more pain that I have to deal with and even though one form of pain control such as ketamine might work with one form of my illnesses such as the Reflex Sympathetic Dystrophy, it doesn’t mean it is going to help with the other illnesses. Therefore, just because I get helped with one mode of treatment to eliminate the pain from one illness, it doesn’t mean I will be out of pain because I will still have to worry about the pain that is occurring from my other illnesses.  After all, Ehler-Danlos syndrome is known to give severe joint and muscle pain on top of everything else it does. 

 So never a dull moment, right?  In the meantime, I have been getting things organized for North Carolina because I leave in exactly one week.  I am going to North Carolina to get a more intensive ketamine infusion than I am getting currently in New York even though I undergo ketamine every other week. In 2001, it was hoped that a Ketamine induced coma would cure CRPS because it blocks the MNDA receptors.  However, even though it did prove to bring many a reduction in their symptoms, the symptoms returned in most people.  That is why patients have to undergo ketamine ‘boosters’, which is also ketamine infusions but not as intensive as the original dose. 

I also figured that I would take this time and let you know a few things about what my day consists of already so that you can better become familiar with all that I am dealing with.

First of all, I am in pain all the time.  I never get a moment that I basically free from pain except when I am knocked out from the ketamine. Other symptoms I have are a change in color and temperature of the affected area (usually cooler than other parts), burning pain (like the worst sunburn ever or that someone poured lighter fluid on me and then lit it), and changes in the nails, bones and muscles. My muscles atrophy, my bones become more brittle, and I experience dystonia as well.  Dystonia is defined as a neurological movement disorder, in which sustained muscle contractions cause twisting, repetitive movements or abnormal postures. Pain causes lack of motion and lack of motion leads to atrophy.

 I am extremely hypersensitive that I suffer from pain form the most innocuous thing you can imagine.  Even the lightest touches or lowest sounds cause me pain.  What may seem harmless to an average person actually causes me intense pain such as someone touching me, my foot being kicked, being accidentally bumped into, being outside and having a breeze go by me, etc. 

There is just no pain like RSD.  It is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY! To put that in perspective the only thing close to this type of pain is amputation, but RSD is still even higher than that and also amputation is quick whereas my pain exists 24 hours a day 7 days a week.  Whereas RSD is ranked a whopping 42, Arthritis pain is ranked about an 18, Cancer pain a 24, and Chronic Back Pain a 26.

With all this pain and suffering, it is no wonder why I can’t sleep.  Since I don’t get normal sleep, I don’t get the type of sleep that is needed to heal a body.  I have severe insomnia because not only does the pain keep me awake, but the Reflex Sympathetic Dystrophy causes changes to the Limbic System of the brain, which is the part that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.  Yet, when I am awake, it is often too physically painful to actually get up and out of bed.

 I start my day with taking medications and that is how I spend most of my day as well.  In order to look somewhat ‘normal,’ I have to take over 50 pills a day. Of course they don’t come either without paying a price, as there are the unpleasant side effects to deal with; upset stomach, drowsiness, diarrhea, constipation, headaches, and many others. These pills do not take all of the pain away, but rather they just enable me to get up, move around, and have some semblance of a “normal” life; they simply allow me to function.

 Besides taking medications all throughout the day, I spend most of my day in the bathroom if not on the couch.  I have become too weak lately to do anything because this disease has been shutting down my body and I am rapidly deteriorating and as a result, I just lay on the couch hoping and praying that I will see another day.  Sometimes I do wonder though if the other side wouldn’t be a better option because I just can’t take the suffering anymore.  Yet, I then remember all the ‘hope’ I have in getting better and all the stuff I have to give to the world and all the stuff I have yet to do and still want to do… and I keep pushing onward… hoping for a day when I am cured and able to reach my dreams and don’t have to suffer anymore.

 In addition, I spend most of the day in the bathroom when I am not on the couch.  As I have severe gastroparesis, my entire GI system is ‘dead’ and is shut down.  I cannot pass nourishment through and through extensive testing, it has been determined that the disease has affected my swallowing as well in addition to not allowing my stomach and intestines to push things through them and empty.  As a result, I have  trouble eating or drinking anything and whenever I consume anything (even ice), I end up vomiting.  I only weigh in the 60s and have a BMI of 10.2.  At this level, it is a true wonder that I am still alive and able to function.  Even the doctors are amazed that I am still alive. 

 I do try to do as much as I can during the day because I don’t want to ‘give in’ to my illness.  I know that if I give it an inch, it will take a foot. I do this knowing I will pay a pain-toll later because the alternative is to sit and do nothing… letting my body worsen and mind waste away.  That is why people don’t quite understand how bad my illness actually is or how much I am really suffering. When I do see people, I try to always look my best or do as much as I can so the ‘front’ I put up hides what exactly is going on.  Yet beyond that false façade is a person being pushed to the limits.  What they can’t see is the pain, mental and physical, I am pushing down just to be there as well as the price we will be paying later that day and night.

 People don’t really realize the true suffering that I am undergoing to can completely understand my illness unless they spend an entire day with me.  When I am in front of people, I try to put up a ‘front’ and look my best.  Unfortunately some people who see me during these “good times” believe that is how I am all the time.  What they don‘t see is the pain I have that night and/or the next day because of what I did. Nor do they take into account all the medications that I took before or afterwards just to be able to do this stuff or that I will have to probably spend a great deal of time resting afterwards.

 I have had to change my whole life to revolve around this illness.  Because of this disease, I had to change my whole way of thinking to include doing things in moderation. Since I am my strongest in the morning and my pain is at its lowest, I usually have to schedule everything for that time. By early afternoon, I am usually done for the day. My life totally revolves around doctor appointments and instead of having an agenda book filled with fun social activities with friends, it is filled with medical appointments.  Having this illness is a full-time job… ne with no vacations, terrible benefits, and no way to quit.

 That is why it is important to have a support system of friends and family.  However, I have to say that when you are ‘sick’ you really learn who your true friends and family really are.  They are the ones who stick it out with you.  It is not just the medications or the therapies that gets me through the days, but it is the friends too. They are all so important… not just for the physiological changes that they bring to my body but for the psychological ones as well.

Thank goodness I have my cat, dog, and of course turtle. They are really what gets me through the day and night.  They have come to be my best of friends.  They notonly give me comfort during the day, but they stay with me awake during the night when the whole house is sleeping and I am all alone left by myself.  They have learned to be there to cuddle with and to be here when I am upset.  It is amazing how they know when I am upset or even know when I am sicker than usual.  My parents constantly call my cat “my babysitter” because she watches me and takes care of me so well… especially when I am sick.  She never leaves my side.  I must say that I have the smartest animals in the world.  I definitely wouldn’t be here today if it wasn’t for them.  In fact, that is one of the major downfalls of traveling to get treatment.  When I travel, I can’t bring them with me, as I go with my dad alone.  We can’t even afford for the whole family to go when I have to go out-of-state for treatment or for an appointment and as a result, my mom stays behind with my pets. I miss them all so much when I go. 

Perhaps though no one is more important than my family. They have given so much up for me and I could never thank them enough.  Not only has my life drastically changed, but so has theirs.  They can’t do many things that they would love to do such as go on vacations, go out to dinner, etc. because of me.  In fact, we haven’t been on a family vacation in like over 8 years and is definitely something we miss and wish we could do.  It is something we definitely could use as family, but unfortunately under the given circumstances, it just isn’t possible.  My parents should be at the point in their lives where they are enjoying themselves.  However, they are too busy taking care of me.   Even when I am down in the dumps, they always make me smile and laugh.  They make the sun come out even on the ‘gloomiest’ of days.    

ImageI have the best dad in the world, as he is not only my dad, but my hero and very best friend.  He has given up so much for me and he would do anything and everything to get me well.  He takes me to all my appointments and takes me across the country.  He is like my knight and shining armor because he always comes to the rescue.  When I am unable to walk, especially after a treatment, he is the one who is always there to carry me and to make sure that I am ‘ok.’  He spends countless nights awake just to check on me to make sure that I am ‘alive.’  He even wakes up during the night to give me medicine or my snack since I need to eat during the night too.  My dad is one of the best and amazing people I know.  He is like superman.  He will do whatever he can to try to help me out.  He knows how much I need help and he tries to do whatever he can to make sure I get it including not only taking me to the places, but he works like a horse so that we can try to afford it. He is up at 3 AM, out of the house at 4 AM and not home from work til 7 PM.  He does this 7 days a week… just so we can try to make ends meet.  My mom always says, “If something happens to me, my dad will never recover.”

 ImageMy mom is also amazing.  Even though she doesn’t go with me to appointments, she is always around to take care of the house and try to run the business as much as she can when we are gone.  She is the one that ‘holds down the fort’ when we are gone.  Even though she might not physically be with me all the time because she doesn’t travel with us, my mom is the first one to make sure that I eat when we are away so that I don’t lose any weight whatsoever. 

Sometimes I think that it stinks to be me because I have this illness that has robbed me of so much.  Not only has it taken all the stuff I have taken for granted such as the ability to walk and eat, to have fun in the world because I spend my days isolated in my house, but I also have lost many friends along the way.  My illness is a major part of my life, as it has to be factored into every decision I make! if it isn’t … I will pay for it later, as will our loved ones. I often worry that my friends will get tired of hearing about my illness and will walk out on me. Sometimes I wonder why people stick around more when people have MS or Cancer, but then I realize that people are probably more willing to hear about cancer or MS because they are used to hearing those words more.  Sometimes I think it really sucks to be me because no one understands because they can’t really relate and as a result, they just walk out on me when I could use a friend to lean on.

Even though this disease has really knocked me down… I am certainly not out!!  Even though this disease loves torturing me each and ever day till the bitter end, loves to give me excruciating pain by giving me shooting pains and taking its flames and burning me in the worse possible way, and loves to make me wish at times that I was dead… I am still pushing onward.  Sometimes I think that this is a real nightmare that I am going to wake up from soon, but then I realize that the only way this is going to end is if there is a ‘cure’ found and I get the lifesaving treatment that I desperately need.  However, since I have been sick for so many years and have undergone so many modes of treatment such as blocks, medications, sympathectomies, etc. I have only radical and expensive treatments left to do.  My family can no longer afford the necessary treatment to get me out of this nightmare and that is why I plead with you to help me because I want to get out of this ‘Hell!’  It was once stated that if ‘Hell’ were a clinical medical condition, it would be known as my disease.

I have tried various ways to raise funds because of how costly this disease has become and how much I desperately need treatments.  If I don’t get help soon, I will die because my body is shutting down.  The doctors even have stated that I don’t have much longer to go.  After all, I only weigh in the 60s and have a BMI of 10.2… how much longer can a person survive like this?  Yet, to get the necessary treatment that I require, I really need your help.  If you can please spread word of my site or bring attention to the fact that I desperately need donations in order to receive this very lifesaving treatment, I would really appreciate it. Even if you can think of any way of fundraising, I would appreciate it.  I have tried various attempts in the past to raise money, but they haven’t really been successful. After all, I have realized that it isn’t ‘what’ you know in this world, it is ‘who’ you know and unfortunately I don’t know anyone that has connections to the media, which would be the best place to reach out to get help with. I have tried websites, posters, writing to the media, etc. but nothing has worked.  Any help that you can do would be much appreciated. 

Even $1 raised is one less than I have to come up with.  After all, the cost of treatment is just so expensive, as even when the treatment and medication is covered by insurance, we still have to worry about paying a copayment, which has added up to over $30,000 a year.  We also have to worry about the traveling expenses since we have to constantly travel across the country, as well as the cost of the treatments, doctors, and medications too that aren’t covered by insurance.  Just the Ketamine alone will cost between $20,000-30,000 and it is not covered by insurance. Everything is just so costly and we just can’t do it anymore.  We have been doing it for so long and the well has basically ‘run dry!’  I hate to be a crier, but unless we get some help, I fear I won’t be able to get the much-needed lifesaving treatment.  After all, we are even having difficulty paying our mortgage and even putting food on our table.  You really don’t realize that when you have your ‘health’ you really have everything.  As the saying goes, ‘health is wealth!’ 

Well… thanks for listening. I will write again when more info is known.

Love,
Fallon

 

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June 8, 2013

ImageHey-

Just wanted to give you an update as to what is happening since we have been back from Minnesota since some stuff has come up.

Well… haven’t been home for very long and it appears we are off again!  Yes… the phone call just came in today that we are headed to North Carolina to see a doctor for a ketamine coma.  I have really been deteriorating and therefore, we are headed to North Carolina next week to see a doctor and to finalize everything.

Things have really been getting really bad lately.  I have really been deteriorating and the doctors do not like at all what is going on.  I am losing weight, I can’t keep food down, I am suffering from pain immensely, and my osteonecrosis is getting worse.  My organs are also continuing to shut down and the doctors have said that if something is not done quickly, they fear that I am not going to make it much longer.  They are quite afraid because even my BMI is very low, as it is only 10.2.  However, I am really suffering in agony too because the pain is getting even worse if there ever can be such a thing.

The doctors really believe that I need to go out-of-the country to have a ketamine coma performed because that is where I would receive the much needed ketamine dose that is required to help me.  The amount of ketamine that I need is way too much than is FDA approved and as a result, I can only be given that amount in other countries.  However, since we cannot a coma out-of-the country, our next best option is to have one in the United States, but in North Carolina because it would be more intensive than the amount that I am getting in New York.  Even though I am going for ketamine in New York every other week, the amount I am getting is nowhere compared to the amount I will receive in North Carolina.  Plus, when I go to North Carolina, I will be getting the ketamine for a whole week.  When I have the ketamine in New York, it is only for a day.  Therefore, having the ketamine in a larger dose and for longer will hopefully turn this disease around and hopefully help more than it is doing here in New York.

When the doctor heard about my case, he arranged to see me immediately.  We decided to also go on Father’s Day because this way my dad won’t have to take so much time away from work.  With all the traveling and expenses, it is important for my dad to work as much as possible.  We just came back from a week in Minnesota at the Mayo Clinic and now we are going to North Carolina.  We will then have to return back to North Carolina for a 1 ½ weeks for the coma and then return also to the Mayo Clinic for 2 weeks for the surgery, which will all be time taking my dad away from work.  When my dad doesn’t work… no money is made and that is something that we can’t afford.  We are having a hard time paying the bills as it is.  We are having a hard time paying the mortgage, putting food on the table, and getting treatment.  Now with all these additional treatment expenses and traveling expenses, we need even more money.  Therefore, it is more imperative than ever to find a way of raising money because we desperately need it in order to be able to get me this necessary treatment that I require in order to survive. So we made this trip to North Carolina during this time because it would only make my dad miss 2 days of work since the whole trip will be Sunday to Tuesday, and my dad doesn’t work on Sunday.

It just stinks that I have to pay all that amount of money to travel and to travel all that way for spending only 3 days in North Carolina. However, it is something that has to be done because we have to finalize everything and go over everything prior to having the procedure.  This is what happens when you don’t get treatment at home.

So, we are heading down to North Carolina so that we can go over everything because everything has to be dotted and the t’s crossed before it is performed.  This is also the first time I will be meeting with the doctor and the doctor also wants to meet me in person before he performs the coma so that he knows exactly what he is dealing with.  After all, I am very complicated and no easy case.  He also wants to go over and discuss everything in person so that we can be on the same page since it is a dangerous and radical procedure that isn’t given ‘everyday.’  Even though it is a ‘go’ for the ketamine, he also wants to make sure with his own eyes that I am a ‘go’ and don’t need anything additional such as testing or special meds prior to the procedure.  Even though this is going to take extra time, which is time I can’t afford, it is all protocol.

I feel really bad though that we are leaving on Father’s day and my dad won’t be able to spend a nice relaxing day at home.  At least though I will get to spend the day with my dad, and I plan also to celebrate the holiday the day before since we will be away the actual holiday.  I already gave him his gift anyway, which were some shirts because he needed them for when we went away, but I would have liked him to ‘relax’ and enjoy a nice BBQ on his special day because those are things that he loves to do.  But, we planned on going that day because we need to have this consultation as soon as possible so that we can have the coma done as soon as possible.  The quicker all this is done… the quicker it can be arranged.

I was already told some info about the coma, but I don’t know all the details 100%.  So far I was told that I would have a PICC line, which is a tube that goes into my upper arm and terminates in a large vein in the chest near the heart to obtain intravenous access.  A PICC line provides the best of both worlds concerning venous access, and it can remain for a much longer duration than other central or periphery access devices. In this way, I will be able to get prolonged IV treatment, I will have multiple accesses obtainable with one access line, etc.

I was also told that I would be having the coma and being placed in the ICU, where I would be under constant supervision.  In addition to supervision being performed by nurses and doctors, my dad will be remaining by my side 24/7.  Unlike other times when I am in the hospital and my dad stays with me in the hospital during the day and then goes back to the hotel at night, my dad will be with me all the time and even spend the nights with me.  They will give him a bed and everything so that he will be able to spend all the time with me while I am there.  The reason for this I because of how dangerous and radical this procedure is.  Also, since ketamine leads to hallucinations and such, my dad will be there in case a problem should arise.  The doctor insists that he would be the first one I would be able to relate to and ‘listen to’ because he would be the most familiar to me.  My dad is just so enthusiastic about being in the hospital and sleeping there.  It should be an experience.

Even getting to North Carolina will be an experience.  In order to go with the cheapest cost because we need to save as much money as possible, we are going to fly with a stopover to Rawley and then take a prop plane to Greensboro.  Even though it is going to be more difficult on my body and take much longer than going directly to Greensboro, it is a sacrifice we have to make in order to save money.  After all, any money saved is worthwhile because we need it to pay for treatment that we already can’t afford.  Since we need to take a prop plane from Rawley to Greensboro, it only seats 4 people and has a weight requirement.  I keep teasing my dad that the plane is never going to go up because he is too heavy.

Besides that though, I really am getting worse.  When we go to North Carolina, we are also going to discuss with the doctor whether we are better off having the coma first and then the surgery at Mayo Clinic or visa versa.  We are not sure what the right way to go about doing this is because the ketamine has the potential of ‘reversing’ and helping my overall condition if given in a high enough dose like if I was given the dose out of the country. Since I am not going to be having that high of a dose though, it is unknown how much I am really going to ‘benefit’ from the coma or get back.  At the very least, I hope that most of my pain and suffering will diminish.

Image However, we don’t know if we should have the coma prior to having the surgeries at the Mayo Clinic because even though the coma could prevent some of the surgeries that are needed, most likely it won’t because it is not going to be that high of a dose as the dose given out-of-the country and therefore if I end up having the surgeries, I will most likely end up exacerbating and worsening my disease.  Any bit of trauma worsens my disease and surgery is one way of spreading my disease.  Therefore, if that should happen when I go for the surgery, it would have only have made the coma a waste of time.  I would have undergone it for nothing because I would be back to square one.  So we are going to go over with the doctors what the best way of doing this is because we don’t want to waste the ketamine, but I really need help badly including getting me out of my pain and suffering, which is something only the ketamine can do. Whichever way we go, whether it is to go to North Carolina for the ketamine or to Mayo for the surgery, we will be doing it during the last week of June and then do the other shortly right after (probably the middle of July).

ImageIt just stinks that I am going to be dividing up my family. My dad will be going with me during this time and my mom of course will be staying behind taking care of the house and my animals. I am definitely going to miss my dog and cat.  They are like my best friends.  Since I don’t sleep at night, they spend all night awake with me. Both my dog and cat love being on the computer with me.

Image

In the meantime, I hope that I can last because it was determined that I have some kind of obstruction in my intestines.  I had an x-ray and the doctors are not sure if it is an obstruction or if my colon has twisted, which is something that they feared would happen because of all the ‘air’ that has built up in me.  I also am all filled up with stool and need surgery to remove all the stool in me since my GI tract is paralyzed, so there is a slim possibility that it could also be a ‘impaction’ instead of a obstruction or twist.  Therefore, the doctors are hoping that I can make it to the Mayo Clinic because they had seen this going on.  So with this occurring, it might force the surgery at the Mayo to come before the coma.

I am really nervous too because they are talking about giving me an ostomy bag.  I really don’t want one.  I feel like they are trying to do anything and everything just to keep me ‘alive’ and it isn’t really living. How many tubes are they thinking about putting in me?  My dad keeps telling  me that it ‘doesn’t matter as long as you are alive.’ But it does matter to me because having all these tubes is not living.  They are trying to make me the “bionic woman!”  They want to give me an ostomy bag, a central line for access in case of an emergency and TPN and for other necessary stuff, a tube into my intestines to hopefully find a place that is viable still so I can get nutrients in, as well as another tube to use as a ‘vent’ because my GI tract is so paralyzed and I get buildup of air/gas that I can’t expel.  With the vent, I would be able to ‘open’ it up and the air/gas would immediately come out instead of having me bloat up and feel like a balloon waiting to be popped or feel like I am 9 months pregnant and ready to give birth.  I know that these tubes are only ways of helping me and making me live, but it is not ‘living’ as far as I am concerned.  I won’t be able to eat or drink like a normal person, I won’t be able to go to the bathroom like a normal person, etc. I know I will never exactly be ‘normal’, but I want to be as close to it as possible.  I just don’t want to look at myself and see tubes coming out from everywhere.  So hopefully I won’t have to get that ostomy bag.  It is bad enough they are talking about giving me the other tubes… I don’t want an ostomy bag on top of everything else.  I will have tubes to put things in and take things out.  It is like I will be a machine.

In addition, we thought about stopping some of my medications because the doctors have read some studies that ketamine works better when there are no opioids in the body.  In addition, the opioids are further shutting down my organs, so they doctors wanted to try to prevent that as much as possible since the disease is doing enough damage already.  However, it was learned today that we cannot cut down on my medications because in order to do so, we would have to raise one of my other drugs, which is Methadone, and we cannot do that.  I have prolonged QTs and as a result, it is too dangerous to raise the dose of Methadone that I am already on because it easily put me into heart failure.  So there goes that idea.

I finally did get my glasses though.  Thank goodness because I have been having such a difficult time seeing.  It really did stink that I needed to get new glasses because they are so expensive, but I am really glad that they were done and I have them because I can see again.  It took going to the Mayo Clinic to find out that I needed new glasses.  Even though I was complaining about vision problems, no one could figure out why.  It took going to the Mayo Clinic and looking at the tumor on my pituitary to figure it out.

I need specialized glasses because I have progressive lenses since I am far-sighted and I need reading glasses, but I have these prisms in my glasses as well to help me see.  Due to my illnesses and the tumor, I have very weak eye muscles and I get vision abnormalities.  I get diplopia, which is when I see a single image, but it is very blurred.  Occasionally though I see double.  Prism lenses are necessary to aid in getting the eyes to work together because the use of prism in the lenses tricks the brain into thinking the eyes are working together by shifting the image only slightly up, down, left, or right.  My eyes are so bad that I need very thick prisms.  Thankfully though my eye doctor can make them thin though so that I don’t have to go around wearing these very thick prisms.  However, even though these prisms really help a lot, they are really expensive and they cost close to $1000 just to have the lenses done without the frames. So, you can just imagine the cost that I have to pay when I have to have glasses made because I can’t just have one pair made.  I need to have 2 regular pairs made so that I can have one as a spare, as well as sunglasses because I can’t go out in the sun without sunglasses due to my hypersensitivity and disease.

But thankfully I got my glasses done.  I haven’t really had glasses all week because of the change in prescription.  The prescription was so different that I couldn’t even see at all with the other. Since I wasn’t wearing any glasses or prisms, I was having a very hard time seeing, as everything was blurred. However, now that I got my new glasses, I have to retrain my brain a bit to get used to wearing them because it has to ‘relearn’ how to wear the prisms.  Never a dull moment. But it is still much better than not wearing them.

Well… I guess that appears to be all that is happening at the current moment.  I hate the weather that is going on.  It is really affecting me. I keep blistering and my autonomic dysfunction keeps going haywire because of the weather.  I just wish this would all just disappear.

I am in the process of reading a good book.  I am reading the new series by Charlaine Harris.  It seems pretty good, but of course I am only in the beginning of the first book, so it is too early to tell.

Well… I guess I am going to get going. When I know more info… I will write more. Please continue to pray for me and please help me continue to raise funds, as I need them more than ever.  With all this much-needed upcoming treatment, I desperately need funds so that I can get it.  If you can please spread the word and bring attention to my website, I would really appreciate it.  If you can think of any ways to fundraise or anything, please let me know.  Any help would be appreciative.  After all… any $1 raised is one less than I have to come up with.

Thanks again for all your support and encouragement.

Love,

Fallon

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June 1, 2013

ImageHi-

 I figured I would write a bit to you because wanted to inform you of the absolute latest and let you know that I am back home, as well as to try to keep my mind occupied because I am really not feeling well.  I also wanted to let you know what is going on because it is very possible that I can end back in the hospital very soon or something worse can happen because to be honest… something isn’t right with me.  I am really not feeling well and it isn’t just a matter of being in ‘pain’ or feeling ‘ill.’  I

 I am really scared that something bad is going to happen to me because I am really not doing well tonight.  Besides not feeling well because I am in my usual agony of pain and suffering, my body is going through intense spasms throughout it.  It is so horrible.  You know when you get those leg cramps that you literally have to get out of bed to walk on your feet in order to untwist the spasm or relieve the cramp?  You know the cramps or spasms that you get when you feel your body being twisted and you see parts of your body being twisted in the weirdest position?  Well… that is what is happening to me.  All my muscles throughout my body are becoming hard, tight, and extremely painful and there is nothing that I can do to alleviate it.  In fact, people usually get up and try to walk on their legs or move the affected limb to try to get rid of the spasms or cramps. However, the more that I do that, the worse it happens to get.  It feels like I am being contracted in all different directions.  The spasms are worse in my legs especially in my ankles. I can’t even walk (even on the one foot) because it keeps having spasms and having contractions.

 All these spasms and contractions are involuntary and therefore, I have no control over them.  I know that almost everyone experiences muscle cramps, which come without warning, but the amount of spasms and contractions that I have been having are so abnormal.  Nothing I can do is stopping them.  I am really nervous because I haven’t been feeling well and I know that this past trip really took a HUGE toll on my body.  Traveling is definitely not easy on me.  Muscle cramps and spasms can have many possible causes.  But to know that I am suffering so much now, it can only mean one thing… whatever the cause is, I am doing worse in that area even though I was just ‘bad’ before. You know?  I always had poor circulation, dehydration, bad bloods (potassium and magnesium deficiency), and malfunctioning nerves, which could cause this.  However, now that I am having a severe problem with all these spasms and cramps, I am only worried that my bloods have taken a toll for the worse, I am dehydrated more, or my circulation has even worsened further, which is something I definitely couldn’t afford since all these factors were already in the ‘danger’ zone before.

 No matter what I do, whether it is massaging, stretching, etc. nothing is alleviating the cramps and spasms.  I am really getting nervous because they are coming so frequently and not going away.  When I spoke to my dad about it, my dad said that maybe it is due to the ‘trip’ and the ‘traveling.’  I am hoping that this is the case because and I am thinking it probably has something to do with it because the last time I went away, the same thing basically happened.  I had come home from California and the very next day I couldn’t walk. My whole entire body was suffering from the same exact thing with having spasms and contractions and I was unable to ‘walk’ because every time I bent my ankle to walk, it ended up in a contracture or cramp in the calf and ankle (just like now). 

 However, just because it happened last time, it doesn’t give me the ‘ok’ that everything is going to be fine.  It doesn’t mean that nothing ‘bad’ is going to happen.  It just means that I was fortunate that I was able to survive and overcome it last time and who knows what will happen this time.  Each time is unique and it doesn’t matter what has happened before.  As a result, we are hoping we won’t end up in the hospital tonight, but we are “on guard” because anything is possible.  Dad has been trying to give me my heart meds, Gatorade slushies, and some ice pops with electrolytes in case my bloods have dropped, but nothing really has been working.  Hopefully something will work soon because not only am I in so much agony with this cramps and spasms, but I am also scared something is going to happen.

 I really know something is going on because these spasms and cramps are just a ‘symptom’ of something else that is going on within my body.  Traveling takes a huge toll on me and it takes awhile for me to ‘bounce back.’  However, even when I do bounce back, I never go back to the way that I was beforehand.  That is why we hate to travel because I am never ever the same as before.  I always end up losing weight and when I do, it is basically impossible to gain it back.  I can’t even afford to lose weight because I already weigh in the mid 60s.  When I weighed myself when I came home today, I of course did lose weight and even losing 1 pound is very crucial because that is like losing 10 pounds to a normal person. In addition, I also vomited blood again tonight.  So between everything going on, I know that my body is not its ‘usual’ self and even though it is usually ‘bad’ to begin with, it is even worse now.  Hopefully, I will be ok.

 But anyway, it feels great to be home.  I am home finally and will be home for about 2-3 weeks because I have to go back to the Mayo Clinic to have surgery again.  So I am going to enjoy this time home.  I surely missed my mom, brother, and animals.  Even though I was with my dad, who is my very best friend, I really missed them.  It was so great to be able to see them.  I am so lucky that we came home today when we did because of all that extreme weather that has been happening out in the Midwest.  There have been many outbreaking tornadoes out there tonight and it probably would have affected us. This weather is just crazy.

 I can’t believe the weather that we are having in this world.  I am so happy to be home in the warm weather because the weather we had in Minnesota was crazy.  Everyone even said that.  It was cold, hot, rainy, sunny, stormy, raw, etc. all when we were there.  You never knew what to expect.  It was crazy.  Thank goodness they had tunnels (subway system) and a skyway system to take you everywhere because this way you never had to be exposed to the outside.  So, at least we were always kept warm and nice and dry. 

 So much was done at the Mayo Clinic and so much still needs to be done before surgery.  I am so fortunate that they were able to give me an appointment when they did because I am so sick. People normally have to wait for months to get an appointment, but I was giving an appointment within a month or so.  People are only given an appointment like that if its an emergency or gravely ill.   Well I knew I was always sick, but like always, I didn’t know that I was even sicker than I already knew.  The doctors literally said that I am the ‘worse’ they have ever seen.  I really freaked them out because they never saw someone with a BMI of 10.2.  After all, a male with a BMI less than 13 can’t live and the same usually goes for a female under 11.  They said, ‘I really need help immediately.’

 ImageSo much was done when we were at the Mayo and that place isn’t a ‘small’ place either.  Even my dad couldn’t believe how much walking he had did and said that the walking affected him (and he is well).  That place is just huge and we had appointments literally from morning to evening.  Yet, we did find out important information and as a result, we will be heading back there most likely on June 23rd providing everything gets approved and set up and cleared because I need surgery.  Of course that is also contingent on our finances as well, so it is important that I get some incoming donations because it is going to be very expensive since we will be there for at least 2 weeks. 

 During the next time I go back to have surgery, they will be doing various surgeries.  I won’t be just having ‘one.’  First, I will need to have surgery to have my bowels unloaded.  It seems that since my whole GI tract is not working and is ‘dead’ and paralyzed, there is nothing that passes through… not even stool. As a result, I am all loaded up and blocked up.  They have to clear me out because there is large stool all throughout me and it just can’t move anywhere because I have no peristalsis throughout my system.  The doctors said that when they do this, I would also lose weight because since I am so ‘loaded’ up, the stool weighs a great amount of weight.  That is why people lose a lot of weight when they use laxatives.  So, they are even more nervous because I am already weighing in the mid 60s.  I really can’t afford to lose more weight.

 The only comfort that we have is that the weight that I am is not ‘real’ weight right now anyway.  I really actually weigh less than I do now anyway and I am only this much because of the stool in me anyway.  So when I am ‘cleaned out’ I will only show the ‘real’ weight that I am.  It isn’t like I am going to ‘lose’ weight but more like I am going to show the ‘real’ weight because stool is like ‘fake’ weight on me.  You know?  But still… to see a number in the 50s when this occurs, it really would freak me out and the doctors said they would freak out too even though we really know deep down what is happening. 

 Since this surgery will make me lose a lot of weight and cause a lot of disruptions in electrolytes and balance in my body, I am also going to have to go for surgery to put tubes in me.  They want to put tubes in me to try to feed me, so they are going to try to put tubes into my intestines in hope that they can try to find one spot that is viable since we already know that all of my stomach and most of my intestines are gone.  They are hoping if they possibly go low enough, they will be able to find some viable portion. The tube will run from the nose to the entrance of the intestines, and it is not a common tube to have done. 

 The doctors also discovered that I have matted small bowel loops.  This means that there are obstructions in my small intestine.  This needs to be taken care of as well.  It looks as if my intestines could be twisting or there could be an obstruction.  Either way, this is not a good sign and needs surgery to be taken care of immediately.

 The doctors also want to do surgery to put tubes in me to ‘vent’ me. Since I can’t remove air from me because my GI tract doesn’t move, they are going to put tubes in me that I will supposedly be able to ‘vent’ myself.  I suffer from severe bloating and my abdomen constantly becomes distended.  I become so distended in fact that it looks like I am pregnant and ready to give birth.  It is so uncomfortable and nothing that I can do really alleviates it.  Even when I get a gas bubble, I can’t burp it out on my own.  Instead, I have to use my hands and maneuver it around my abdomen with my hands and try to bring it up.  So, hopefully these tubes will do the job to be able to remove whatever ‘gas’ I may have.  It will hopefully make me more comfortable. 

 I also will have to have surgery to put a central line in.  That is where they will be putting the IV access in.  Since I am going to be undergoing so much surgery and since I am so unstable, they want to have the best access that they can have, which is though the central line.  In addition, they are thinking of possibly giving me TPN through that line as well, even though they would really not want to because of the severe risk of infection.  TPN is used as a last resort because it is not a great option for anyone let alone for me.  This unnatural way of feeding the body is far from perfect and comes with several significant complications such as infection (which leads to septic shock) and is frequent, blood clots, liver failure, etc.

 The doctors are also putting in a central line because they are worried about re-feeding syndrome. They think that they would be able to ‘control’ this better though this line.  Like I said before, Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally). These shifts result from hormonal and metabolic changes and may cause serious clinical complications.

 During my appointments at the Mayo, we found out that my eyesight has really deteriorated.  Even with glasses, my eyesight is 20/60 and 20/40.  I have also been getting severe headaches and a lot of my bloods relating to my pituitary brain tumor have become elevated.  As a result, the doctors want to look more carefully into the tumor as well.  Therefore, I will need a special MRI done that I need to be under general anesthesia for.  Since I need to be under general anesthesia, they figured that I would do it during the hospitalization.

 So a lot has to be done and has to happen.  I was supposed to be going to Georgia beforehand to have that huge intensive ketamine coma, but we are thinking of postponing it.  Not only do we not have the funds for both trips, but we were also thinking it might be better to put Georgia to after the Mayo Clinic because we are afraid that the surgeries are all going to aggravate and exacerbate my neurological disease and autonomic dysfunction.  If that happens, we don’t want the treatment that I am going to receive in Georgia to be ‘wasted’ or ‘undone’ because any bit of trauma to my body can spread and worsen my illness.  We would hate to go through all that in Georgia to only worsen it again.  You know?  So we figured that we would do all the surgeries at Mayo and then have the huge Ketamine coma in Georgia so we don’t undo the intensive coma that will hopefully work and be beneficial to me. 

 So we left today to go home.  We had a good trip home.  We were very fortunate that the same couple that picked us up in Minneapolis to drive us to Rochester, which is 80 miles away, was able to drive us back to the airport.  We really liked them and were really happy when we heard that they were going to be able to.  However, we missed his wife in the car, but we understood that she needed her sleep because he picked us up quite early, as we left like 4:30 in the morning.  We can’t thank them enough because not only did they pick us up and drive us the 80 miles to Rochester, but he drove us back to the airport at that hour in the morning.  In fact, he was so generous that he knew how much I wanted to go to Mall of America and since I didn’t get to go, he took me there this morning prior to going to the airport so that I could see it.  We had some time prior to going to the airport because we were early and therefore, he drove us around it so that I could see what it was like.  Of course we couldn’t go inside or anything because it was way too early and everything was closed, but I could tell that this mall was amazing and someplace I definitely want to check out the next time we come back.  I definitely want to go to the Mirror Maze, the aquarium, etc. that they have inside.  Besides having every store you can imagine, they have an amusement park with 3 roller coasters, an aquarium, nickelodeon studios, Lego World, Mirror Maze, etc.  It looks like one amazing place and it is continuing to grow.  They are adding an Olympic size ice-skating rink to it, which is supposed to open in the Fall.  When I come back, I made my dad promise to take me there.

 My dad was so funny when we were at the Mayo Clinic.  When you are there, they give you a beeper every time you check in for an appointment and then when they are ready for you, the beeper goes off to notify you.  However, my dad kept washing his hands because he thought they were ‘dirty’ because he kept saying, “you know how many sick people handle this?”  Just when he thought he wouldn’t have to wash his hands anymore because he thought we were done with the beepers, we were given another appointment that needed a beeper.  It wasn’t til after this last appointment that he told me what he kept doing, which was to keep washing his hands because he thought so many ‘sick’ people handled it.  When he told me about it though, I told him that he didn’t have to worry because they sterilized and cleaned all the beepers after they were handled.  I showed him that there was a box that they were put into after the patients were done with them so that they can be cleaned and as a result, they were clean when he was given them in the first place and had nothing to worry about.  He felt so stupid after that.  Only my dad!

 ImageThe Mayo Clinic was simply amazing.  Not only was it the biggest hospital I have ever been at, but I felt really comfortable there. Everyone there were so incredibly nice and so incredibly helpful.  They would do anything to help you out.  If you ever needed anything or even if you felt tired or anything, they would help you in any way possible… even if it was to bring you a wheelchair because you couldn’t walk anymore.  They even had a piano there that anyone can go on to ‘play’ so there was constant music going throughout the place.  I was quite surprised how many talented people were there.  They really put on beautiful concerts.

 ImageIn addition, they had little historical exhibits throughout the hospital.  I saw many things such as the very first operating table, the first spoon to remove the gallbladder, how the nurses dressed etc.  They even had a patient library where you could research anything and everything.  If you needed anything… they had it.  This place was mega impressive. 

 ImageMy dad is so funny because he keeps forgetting where we went.  He keeps asking me if we went to “Minneapolis” or “Minnesota.”  I keep telling him that “Minneapolis” is the city and “Minnesota” is the state.  But I also keep telling him that really we went to “Rochester,” but he doesn’t want to tell people or remember that because he insists that no one ever heard or know about that city. 

 Want to hear something hilarious?  My dad is very generous and believes in treating people good who are good to us.  He likes to ‘thank’ people who help us out by tipping them because honestly they don’t have to be as generous as they are.  So when we went to the airport in Minnesota, we thought that the transport guy that brought me to the gate was literally going to kiss my dad on the lips when my dad tipped him.  My dad only gave him $5, but he got so excited and we literally thought that he was going to kiss him.  He didn’t even want to leave my dad.  When he got ‘paged,’ he told his supervisor that he was going to help me, but his supervisor was like “That is over an hour away… you can’t stay there.”  The guy was too funny.

 I also saw lately that one of my favorite authors included me in her newsletters.  I have been fortunate to have Jodie Picoult write about me on her Facebook site and then include me in her newsletter.  Perhaps she will be able to help me receive some aid or bring awareness to my cause because I could really use it.  I need as much help as I can get.

 So… that appears to be it.  I guess I will go and rest because I have had a big trip and I am tired and not feeling well.  Just wanted to give you the latest. I also have to go to the eye doctor tomorrow to get new glasses because I can’t see, as we found out from the eye exam.  I hate getting new glasses because they are so incredibly expensive because I have to get such a specialized pair.  I have so many things wrong with my eyes and since the muscles don’t work in my eyes well, I even have to wear high-level prisms.  Just the lenses alone cost me nearly $1000.  I don’t know how on earth we are going to afford this, but I can’t see.  Gosh… when it rains it pours.  People don’t realize that when you have your health, you have everything.

 It is so important that we find a way of raising funds because of the expenses that we have especially now.  I really need surgery in addition to the other treatments that I need.  If you can think of any way to raise funds, I would really appreciate it because I am trying to hang in there, but I desperately need treatment if I am going to make it.  Please help me.  I hate being a ‘crier’ or sounding like a broken record, but I just need help so badly and I don’t want to die.  I am just running out of funds and options, so I really need desperate help from others if I am going to make it and be able to continue treatment.  Hope you can understand where I am coming from.

 Well… talk to you soon.

Love, Fallon

 

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