I just wanted to write because so much is happening and I wanted tell everything that has been occurring since we are looking at surgery on Tuesday, if all goes well. My life is just one chaotic mess and it is just snowballing out of control!
Well… I guess I should start with the biggest of all announcements. I am supposed to be undergoing surgery this upcoming Tuesday, November 19th. However, we are having a HUGE problem because unfortunately the surgery is not covered by insurance. Don’t get me wrong, the insurance is picking up some of it (thank goodness), but they are not paying for a lot of other aspects including the actual surgeon and all that he is doing. From going into the hospital for surgeries in the past, I know how expensive a surgeon’s fees can be. I really don’t know how we are going to be able to afford it to tell you the truth. Thank goodness the insurance company authorized a lot of the other parts of the surgery even though I have no out-of-network benefits because at least they are picking up something. If they didn’t do that, I would have been left paying for everything including the actual hospitalization too. But even so, it is still a huge chunk I need to come up with!
Therefore, I am hoping to still be able to raise enough funds to possibly help pay for this surgery. It is extremely expensive and without help, I don’t know if I am going to be able to undergo the surgery because of the cost. If you can please spread word that “help” is so desperately needed especially since we are running against the clock because Tuesday is basically around the corner… I would really appreciate it. Gosh… sometimes I wonder what this world would be like if money didn’t exist.
So like I said… surgery is supposedly scheduled for Tuesday. I am extremely nervous because there is so much that has to be done. I can’t even believe how long the surgery is going to last. When I asked the surgeon, he said that it would take 4-6 hours. Luckily, dad should be staying with me the entire time when I am in the hospital instead of just leaving me there. I mean…usually my dad will spend all day in the hospital with me and then go home at night to go sleep. However, when I go to this hospital, I am not supposed to be left alone because they are not exactly “familiar” with my illness and we need to have him around in case something should happen. He is like my “mouthpiece!”
Thank goodness that I will be able to stay home for this surgery. I can’t remember the last time I was able to have a surgery in New York… especially in Long Island. Due to the complexity of my situation and how rare my condition is, my doctors are usually only found at top hospitals throughout the country such as at the Mayo Clinic (Minnesota), Hopkins (DC), Stanford (California), etc. However, when it comes to the osteonecrosis and all that is occurring that I am having surgery on, I am lucky that I was able to find such a fine and wonderful surgeon in the area.
However, even though I am going to be able to have the surgery in the area, it has been really hectic around here. The surgeon is extremely nervous because he knows how complicated my situation is and how much attention I need. He knows how I can’t be treated like a ‘typical’ patient because the slightest innocuous touch such as a blanket or even an saline IV line can send me screaming in pain and into a huge crisis because of the severe autonomic dysfunction that I have. He knows that he and the hospital are definitely going to have their hands full and as a result, I have been fortunate to have such a wonderful surgeon that he has been having meetings with anyone and everyone in the hospital (from all the different specialists and anesthesiologists on my case) to talk about my case and to make sure that they are all familiar with what is occurring with me. The surgeon knows that we are going to have our hands full as it is, he wants the whole entire hospital familiar with everything so that no real big surprises really arise because he is expecting that to occur with the territory as it is (so he is trying to minimize it as much as possible).
My surgeon is so wonderful. He has been having meetings with everyone to make sure that they are all as knowledgeable about me as possible and so that I am in the best hands possible. He has also been making me undergo all this different kinds of testing because not only does he want to make sure that nothing goes unnoticed and that he is on top of everything, but the hospital wants to basically cover their butt because of how complicated and tough my condition is. They are basically afraid of being ‘sued’ and therefore, they are trying to dot every “I” and cross every “t” before anything. You know?
I went for pre-surgical testing the other day and I saw how crazy everyone was there. When I looked at my friend who took me to the hospital to have this done, he told me that the reason everyone was ‘freaking’ out over everything and pushing panic buttons on everything was because they weren’t used to seeing things like this. Even though we are used to my illness and what is happening with it everyday, they are not and therefore they were afraid that something was happening and was freaking out. We kept telling them that it was the ‘disease’ but they kept freaking out.
What a day pre-surgical testing was. It really made me nervous about the upcoming surgery and glad that I won’t be left alone at the hospital because if they were freaking out over all that was occurring now, I was scared what was going to happen after the surgery when my disease would be all stirred up and causing so many problems and havoc in my body. I can just see how crazy everyone is going to be. As it was, they were freaking out because they couldn’t get my blood pressure because it was too low, my lungs sounded like crap because there was so much fluid in them, the discoloration, the amount of meds that I am on, etc. In fact, they were so nervous that they even had me go for further testing such as more scans and such just to make sure that nothing else was occurring because of everything that they were encountering. They didn’t even make me wait… as they personally called and got me in right away. They even personally escorted me to all the further testing that I needed and waited for the results too so that they could have them ASAP.
But the surgery is scheduled for Tuesday. It looks like it is all set providing that I get all the necessary clearances. As I said before, I went for the presurgical clearance in the hospital, but I still have to go for the clearance with my medical doctor on Monday. The biggest problem I think that they are going to have is the severe aspirations because I am really filling up with fluid. I am having extremely hard time breathing and when they were listening to my lungs, they said that I sounded like “crap!” The pulmonary doc did give me clearance, but the doc said that I have to remain as upright as possible. However, when it comes to surgery, it is literally impossible to do this. So… I hope that everything will go OK with that part.
The surgery is for the osteonecrosis, as well as because all the nerves are exposed and I also need work on my teeth as well. I need so many root canals, so when they deal with the osteonecrosis and the nerves, they are going to deal with the root canals as well because I cannot have them done like a regular patient under novocaine because of my condition. The novocaine just doesn’t hold me. I can get over 5 shots and yet, it still won’t make a dent in making me ‘numb’ enough to perform the necessary work that needs to be done.
Like I said before though, I am going into surgery because of the osteonecrosis and because the nerves are all exposed. Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The bone starts to die and may break down. Therefore, I have my jawbone actually protruding through my mouth. It is extremely painful. I am also having the nerves worked on because I am in even more pain because all of them are exposed. It’s a bit more complicated than this, but I figured that I would put it as this so it can kinda be understood.
I will also be having work on my feet during the time I am in the operating room since it has to be done while I am under general anesthesia. So I will have one surgeon working in my upper half of the body and another in the lower half… not to mention all the other doctors and specialists that will be in the room because of my very complicated and complex medical condition. After all, I am not the typical case that is seen everyday and can even rarely be found in textbooks and medical school and therefore, I am always put on “show” when I go to a hospital. I should charge admission because if I did, I certainly could become rich.
In addition, I will have lots of specialists in the room to monitor me such as at least 2 anesthesiologists (as well as other specialists) because they really and they want to be ready to handle it if that should occur. After all, not only do I have this rare and complicated disease, but I have severe autonomic dysfunction and therefore, all bets are off as to what can and will happen. The simplest and littlest move or touch can literally throw my body into a frenzy and cause a huge crisis in the OR. After all… if there is one thing my body doesn’t like… it is that my body doesn’t like having anything mess with it. That is another reason why they are going to keep me on ketamine after the operation afterwards and as long as in a coma as possible because this way it can help with the after effects.
Besides helping with the after-effects of the surgery, the ketamine is also going to help with the pain of the surgery since it is going to be extremely painful. Surgery is painful for anyone in general… let alone someone who is already in excruciating pain, extremely hypersensitive, and everything that occurs to me is magnified. The smallest needlestick is like someone sticking a butcher knife in me. Therefore, with all the work that is being done during this surgery, we know this operation is going to be extremely painful for me. So… hopefully the ketamine will really help.
In addition, the ketamine is going to be used in hopes of not allowing the disease to spread further during the surgery. As the disease is really spreading lately like a wildflower, it is important to keep it at “bay” especially when it is known to spread when anything traumatic occurs to my body. Surgery is extremely traumatic and therefore, it would pretty much be guaranteed that it will spread. Therefore, it is hoped that the ketamine will permit that from happening since ketamine is an NMDA receptor that is supposed to help my illness and in a high enough dose be able to ‘reverse’ the disease (of course that amount is only attainable outside the country and is incredibly expensive). I consider ketamine my “miracle” drug because I have witnessed some amazing things with it. I have seen firsthand how the ketamine can really reverse my disease because one time I had come out of surgery and I couldn’t even stand up. They rushed me immediately into a ketamine coma and after being in the coma for a bit, I was back to the way I was prior to the surgery. That is why I so desperately want to receive the very high dose of ketamine out-of-the-country because I know that in a high enough dose, it could pretty much guarantee me that it can ‘cure’ me. However, it is too expensive for me to pay for it on my own and therefore, it remains on hold until I get the necessary funds. Hopefully my time won’t run out beforehand.
So… surgery is supposed to be Tuesday, which is basically around the corner. I guess Thanksgiving will be put on ‘hold’ for me because I won’t be able to really ‘eat’ with all that is happening. I can’t really eat normally because of the severe gastroparesis, as even the limited foods that I can eat such as the egg whites, ices, and ice cream are really a battle to get down. However, with surgery… it is going to be even more difficult. Plus, I am the one who usually prepares thanksgiving meal and makes the turkey and everything. It is one of my biggest accomplishments throughout the year and I am always so proud of myself and of my dinner. However, I probably won’t be up to cooking because of the surgery and therefore, we might be ordering thanksgiving dinner into the house instead of making it at home.
I can’t believe how close Thanksgiving and the holidays are already. It was already decided in my family that there is going to be absolutely no gifts this year for the holidays whatsoever because there’s just isn’t any money. I really don’t care at this point. All I want anyway can’t be bought because it isn’t materialistic. All I want for the holidays is to get better. I just want treatment for the holidays and that is too big to wrap up and put into a box anyway.
There are just a few days until surgery, but there is still plenty to be done. In the morning I have another ketamine coma. Thank goodness because I have been in so much pain lately. I have literally been climbing the walls because of the pain that I am in. Even though I get really weird dreams while I am under the ketamine such as me floating in air, at least I am on “vacation” because I get to escape the disease for the entire day. Unfortunately though, all good things come to an end and I have to go back to being in Hell by waking up at the end of the day.
In addition, I wonder what they are also going to do about giving me injections into my knees because they think I am developing a allergic reaction to the drug that they always used and although they did switch the drug last time, I had a really bad reaction to it the last time and they said “no more with that new drug.” They usually give me injections into my knees because they are so very bad and I also have bursas in them. Also, my disease causes them to have osteoarthritis as well in them too. So while I am under the ketamine, the doctor usually gives me injections into my knees because it will be too painful without being put “under” the ketamine and being alert for it; I would never sit still for it. However, so now that I can’t have the old stuff because they are afraid of the allergic reaction and now since I can’t have the new drug, I wonder what they are going to do because I desperately need something to be done. I literally can’t even bend my knees without it.
I only wish I could raise enough funds so that I can get the ketamine coma that is out of the country because the amount of ketamine that I really need to help me and to hopefully put this disease in remission is far too great than is FDA approved. However, it is incredibly expensive and only attainable outside the United States. Of course we can’t afford it on our own and therefore, it is really up to others to help me be able to get it before it is too late.
It is a radical, risky, and extremely dangerous treatment, but it is the only treatment out there that can potentially ‘cure’ me. I only hope I can get it before it is too late. I am suffering so much and in so much pain. This is definitely not the life anyone should be living. I am deteriorating so much that I spend entire days on the couch… too weak to get up and screaming in agony because of all the pain that this disease brings about. This disease is known as the most painful disease to exist. It is worse than childbirth, amputation, etc. I don’t wish this disease on my worst enemy. Doctors have even stated that if “Hell was a clinical medical condition, it would be known as my disease!”
Well… so much has been happening and to be quite frank with you… things are not good. I went to a doctor earlier in the week to discuss my bones because they are afraid of me getting a life-threatening fracture, as I have extreme osteoporosis and my bones are really deteriorating. I have tried numerous procedures and medications to try to increase my bone density, which includes the powerful bisphosphonate infusions, but due to the osteonecrosis now… they cannot be done anymore. So… we went to see this top doctor in the field in hopes that he would have an insight to help me because my bone density is so bad. I am supposed to hear from him tomorrow. So I will keep you posted. He did say that I am “one complicated person” and in “really bad shape!” Like I didn’t know that, right?
Dad and I have also been talking. I desperately need to go to the hospital to have the tubes put in me. I am really deteriorating and really weakening. My stomach is way out of control and I am getting sicker and sicker. I desperately need the multivisceral transplant and unfortunately I am too sick right now to even get it. Unless something is done soon and quick, I am not going to make it much longer. The doctors want me to stop eating and drinking because it is only compounding the problem, but I can only accomplish that if I have the tubes. However, I desperately need help in getting donations because the hospital is not local and we will need help in paying for it.
Dad keeps looking at me in dismay because it isn’t easy looking at your child and knowing that as much as you want to help… your hands are tied. He keeps telling me that he would take away this illness if he could, but I always assure him that if he did that he would always return it in a split second because he wouldn’t’ be able to handle it. It kills him that he is my father and he can’t even do anything to help me… not even provide the ability to get me the appropriate treatment that I need. But he has been helping me and paying for things for so long that the well has to run dry after a while. There is only so much a person can give. So after being sick for so many years, there just isn’t any way possible that my dad can do it anymore unfortunately, and it absolutely kills him! You can see it in his eyes and how he looks at me.
Dad works so hard and gets so little sleep in hopes to make up the money so that he can provide for his family and yet no matter how hard he tries… it is never enough. Not only are we having trouble paying for my treatments (even with all the cuts that we have made… cuts that I even need to have), but we are even having trouble paying the mortgage and putting food on the table. I just hope that nothing ever happens to him because he is my life. If something ever happens to him, I would never forgive myself. I am always so scared that something is going to happen too because he is no youngster, as he is already 60 years old and he can’t keep up this pace the way he has been doing. He is really my biggest supporter of all and I don’t know what I would do without him. He is simply the absolute best.
I have been so ill lately that I don’t really take any pleasure anymore in anything. Life is just basically about existing and suffering. As such… someone ended up doing my hair today to try to make me feel a bit better. They tried curling it and making it look like Kelly Ripa. It came out extremely nice. If only my hair could always look like that instead of looking so bad. For once… I was able to look kinda ‘pretty’ instead of looking hideous and like an emaciated skeleton that looks worse than someone from a concentration camp.
My best friend also made a recent trip to Disneyworld lately. I of course can only dream of doing such a thing because we don’t have money to do any fun things anymore. In fact, we haven’t been on a family vacation for like over 8 years. Anyway… I was so fortunate to have him bring me back a souvenir as he brought me a Pluto stuffed animal because he knows how much I love Pluto and stuffed animals. He is definitely coming with me to the hospital.
I am so grateful for all that everyone has done for me already. I know how hard it is to donate and it means so much to me. I also want to let you know that one of my friend happens to be selling walnuts especially for the holidays. I am really lucky and fortunate to have her as a friend because she has been doing everything in her power to try to help me get the much needed funds. She has made me YouTube videos, and has tried thinking of other ways to bring in money. Her recent project entails selling nuts, as she has a family-owned company of growing and selling walnuts grown in California. All her nuts and mixtures are absolutely fantastic, as they are always nothing but containing real fruit, and all but one of the recipes are vegan-friendly.
1% of her profits go towards my cause, so by enjoying her walnuts, you can also be helping me out as well. You can pre-order now to be shipped Dec. 1st, and the first ten of Fallon’s friends get 15% off! Use coupon code: savefallon. If you go to her website, you can check it out, as well as place an order www.crazygonutswalnuts.com. The nuts look absolutely yummy, as she has different flavors that include Wack-o Orange, Bananas, CocoNuts, Buffalo, Glazed, Sage and Rosemary, and Mapley Bacon.
In the meantime, I have been trying to keep myself somewhat busy. So I have been trying to read a new book called “Bridget Jones Mad About the Boy.” It is pretty good. I can’t wait to finish it because I want to read the new book that came out by Mitch Albom called “The First Call From Heaven.”
I really am a prisoner in my own home because I am in so much pain and so weak that I can’t get off the couch. Plus, with the winter season and cold upon us, I really can’t go out because I can’t tolerate the cold. Hopefully it won’t be a really cold winter because I can’t tolerate the cold whatsoever. Hopefully it won’t really be snowy either because then I will really be stranded too because since I am on crutches, I can’t really go out when it snows. They have yet to invent “snow crutches” or “snow boots” for crutches. So… I can’t really go slip sliding… so snow and ice really prevent me from going out.
I can’t remember the last time I actually got to play in the snow. I remember when I was younger how I used to love playing in the snow… not to mention how I was a competitive figure skater too, so I used to spend countless hours in the cold ice-rink. I used to skate before and after school and had the time of my life. I constantly competed and even did shows at Rockefeller Center. I had the same coaches as the gold-medalist Sarah Hughes. That was really the time of my life.
Physical activity has always been a defining point of who I am. I would do anything to turn back time and be able to go back to the good old days when I was younger. I would love to go back to ice-skating. When I skated before school, I would say that nothing compared to the smell of the ice in the morning to wake you up. Nothing compared to being able to soar on the ice and fly in the air. It was amazing. I loved it. I also loved being able to go out and play in the snow in general… Building snowmen, having snowball fights, going sledding… these are all things that I really miss. If I ever got better, I would love to go back to skiing because even though I rarely skied and couldn’t even barely get up if I fell, I would love to try it again.
But since I have come diagnosed with my illness, I really have become a slave to it and it really has robbed me of so many things. You really don’t really realize what you have or appreciate what you have either until it is gone. Never did I think that I would never be able to walk or even eat. I never thought that every waking minute was going to be consumed with intense burning pain, stiffness, swelling, and discoloration. My limbs have become cold and pale, as well as underwent skin and nail changes. They also have muscle spasms and tightening. My skin is very sensitive and burning hot, and even the slightest touch, bump, breeze or change in temperature can provoke a feeling of intense pain. I am so hypersensitive throughout my entire body and I constantly feel like I am having gasoline poured on me and being lit “on fire.” I can’t even wear certain clothing, use a blanket, or have people touch me because the most innocuous touch and the most gentlest caress sends so much pain throughout my body that you wouldn’t believe. This condition 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. With this condition the brain is going “hay wire” and sending pain signals out, when there is no real cause of pain.
I hate to sound like a ‘crier’ or a ‘beggar’ because that isn’t who I am, but I just hate sitting back and watching my life and health just deteriorate. I just hate watching my life that at one time held so much promise and I was looking forward to so much such as having a family, being a doctor and helping others, etc. be taken away from me. Even all the hard work I put into accomplishing all that I ever would want has been wasted such as all that hard work I put into school in accomplishing my great grades because I can’t even accomplish my dream of becoming a doctor and helping others. All that I ever worked for and hoped for is gone.
This is not the life that I want nor ever envisioned. I hate how I am 31 years old and still trapped in my parents’ house. Before I got sick, I enjoyed figure skating, playing the violin, going to the beach, rollerblading, spending time with friends, going to school and volunteering for community events. Yet, my life has drastically changed with my illness, as I can’t even bear any weight on my leg and is now dependent on a wheelchair and crutches to get around. I have lost so much weight that I look like an emaciated skeleton, as my weight has dwindled into the 60s. I have lost all muscle tone that I absolutely hate the way I look in pictures and therefore, I have to literally airbrush all my pictures before I put them up because I can’t stand the lines that form because of the lack of tone in my skin and lack of muscle. Even when I look for glasses, one of the priorities in picking them out is that they cover the lines!
I hate how my life depends on taking over 50 pills daily. I just don’t take medicine to get “high.” I actually need my medicine! I have pain everyday… Every minute… Every second… and at all times. My pain is usually a 10 out of 10. Yet, there is really no medication to help and there really is no cure. I I take these pills just so I can be able to somewhat function, and these medications come with their own side effects. I am not on just little medications like Tylenol or vitamins either. Instead, I am taking potent medications like Methadone, Morphine, Dilaudid, Ketamine, etc. I even have to keep a computerized record of my medical history, drugs I have taken and currently taken, treatments that I have had, etc. because it is just so long that if I had to rewrite it every single time a doctor or someone needed it, I would be there all day. Even on the computer, it comes out to 5 pages in length. In fact, when I hand them the computerized sheet, the doctors, nurses, PA, etc. are all happy because it saves them from re-writing everything because they would be not seeing any other patient if they would have to re-write everything. When I go to the doctor with my records, it is like bringing huge volumes.
I hate how I have to suffer in so much pain. My days have turned into a series of doctor appointments, treatments, therapies and a medication regime all under a blanket of pain. I hate how I was once a social butterfly and now my social calendar is only filled with doctor appointments or else I am home on the couch just hoping I can make it through the day. Thank goodness though that I have my animals because they are my best friends. They have kept me so comfortable and I don’t know what I would do without them. My cat spends all night with me and my dog spends all day on the couch with me. Between the both of them, I am never alone. My parents call them “my babysitters!” To think though, I would love to be able to do so much though with my dog including go out running with him and even walk him. However, not only can’t I go for long walks because of my illness and how weak I am and how much pain I am in, but there is no way I can walk him because I am on crutches and he will pull me down (even though he is fully trained and one of the nicest dogs you can ever meet).
I hate how I have to suffer in so much pain. My days have turned into a series of doctor appointments, treatments, therapies and a medication regime all under a blanket of pain. I hate how I was once a social butterfly and now my social calendar is only filled with doctor appointments or else I am home on the couch just hoping I can make it through the day. I hate how not only has my life become a slave to this illness, but my family had to literally give up their lives as well and have literally stopped ‘living’ their lives because they had to care for me. I am extremely thankful (don’t get me wrong) for all that they have done for me, but it is not fair that they can’t enjoy their lives. I can’t remember the last time we went on a family vacation or they even went out for a simple dinner. I am tired of them spending all their money on me and having no money for themselves. I am just simply tired of having the only thing the word FUN and me have in common is the “first” letter (the “F” … “F” for FUN and “F” for Fallon). I cant remember the last time I can say that I had “FUN!” This is not the life I or anyone should be living!
Sometimes I wonder what would honestly happen to me if and when something happens to my parents? I really wanted to be able to be independent and able to provide for myself. However, I constantly wonder what I would do when I depend on them for so much, need so much help, and can’t even work. Something has to change before it is too late. I can’t live like this.
I just can’t take this life anymore!! I just wish I can close my eyes and it’ll all disappear! What did I do to deserve this? Someone please help! Some may want physical presents for the holidays… All I want is to get well… Something that’s out of my hands and depends on the help of others! Please pray, donate, and spread the word!!
Thanks again for all your support. I can’t thank you enough because it has been a long and difficult path… one that I definitely wouldn’t have gotten as far as I have if it wasn’t for your help. Please continue to pray for me, as well as please continue to spread the word that HELP is desperately needed. Only by word of mouth does it look like I am going to be able to accomplish getting the much-needed donations for the treatments that I need. After all… when it comes to the media… it isn’t “what” you know, but “who” you knows and unfortunately, I don’t know anyone.
Well… until next time. If I don’t write beforehand, I will write again after surgery. But, I will try to update again before Tuesday.