FALLON MIRSKY

Please help SAVE MY LIFE!

November 11, 2015

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Just wanted to give the latest update since it is another sleepless night. Feeling so ill and figured that instead of just sitting here suffering in pain, I would be somewhat productive and give the latest update on what is happening. Also thought that maybe by doing this that it would help take some of the suffering and pain away because it will keep me busy and my mind occupied. If nothing else, it will help me pass the time until morning. Thank goodness that I have ketamine in the morning because I have been suffering so much lately.

I have been having the worst pains in my stomach lately. I never thought that it could get this bad. Even though I constantly used to suffer with stomach pains, I used to get a pain that was debilitating and wiped me out maybe once a day or every other day. However, it is now occurring that I get this pain about 4-5 times a day now and it is absolutely unbearable and intolerable. It literally wipes me out.

Something definitely needs to be done and done fast because my entire digestive system is acting up. I get these debilitating pains 4-5 times a day, which occur over the course of 2 hours each. It is almost like having contractions when you are pregnant and ready to give birth because I can literally feel them coming because they start out subtle and then they build and build until you can’t take it anymore and all you can do is literally lay there in the fetal position and scream and cry because of how bad the pain is… while my entire body breaks out in chills because of the triggering of the autonomic dysfunction. This pain lasts for about 2 hours and just as it builds like a contraction, it also peaks and then it dissipates.

The doctors think that the reason that I am breaking into the chills so much lately is because of the autonomic dysfunction and the fact that my body can’t handle processing more than one sensation or an extreme sensation at a time. Therefore, when I become in pain, I break into the chills. As soon as the pain disappears, the chills stop too.

The pain is just so excruciating at all times and besides that… I have been extremely nauseous and vomiting like crazy. I can’t even go to the bathroom without vomiting. It is so weird because anything that basically puts pressure in the abdomen (i.e. going to the bathroom)… it makes me vomit. I just can’t take it anymore.

I can’t even eat or drink anything anymore without having mega problems with my stomach and the vomiting. Even the very few things that I was able to get down before…even my favorite things to eat like ice cream or a simple thing like egg whites have become impossible to get down. I can’t even stomach getting my pills in me anymore, which is a nightmare because it isn’t like I take only a few pills. I take like 20 pills at a time. I have no choice but to take these pills too because I can’t live without them. After all, it is these pills that are supposed to be keeping me ‘alive’ and keeping me going!!

I am supposed to be leaving November 30th for Cleveland Clinic. That day can’t come soon enough. We are supposed to be going to Ohio to see the surgeon because I am still in need of the multivisceral transplant which entails getting a new small and large intestine, stomach, liver, and pancreas. It is a major surgery that is extremely dangerous and in fact it is the most dangerous of all transplants. Not many hospitals perform it, as Cleveland Clinic is only one of the six that do it.

However, since it is so dangerous, I need to be as strong as possible in order to be able to survive it. Therefore, since I am so very weak, they are hoping to take out the colon first and hopefully the small intestines won’t be as bad as they are thinking and therefore it will allow us to buy some time to allow me to get stronger for the transplant. We won’t really know for a fact how badly the small intestines are until they remove the large intestines, but the goal is to just basically live on the small intestines for awhile and get me stronger for the transplant.

This was the surgery that was supposed to occur months ago. However, it had to be canceled because of the accident that occurred when I broke my hip, femur, and pelvis and became the bionic woman. I had to have mega surgery and I am still recovering from it. I had to basically relearn how to walk all over again because they had to put a rod though my femur and put plates and screws and nails into my bones as well. This was the worst surgery I have ever had and a surgery I dread ever having again. It was unbearable the recovery from it has been incredibly hard. Thank goodness I have Scooby because he has made the biggest difference and he is the reason I have made it as far as I have.

My mom and others say that I wouldn’t have recovered and made it this long and far if it wasn’t for Scooby. They are probably right when they say that. He has been an amazing dog and best friend to me. When he stayed the entire 2 weeks in the hospital with me, it really made a huge difference in my recovery. I can’t tell you how much the pain changed when I came out of the operating room and they put him on my bed in the recovery room. Scooby was actually the first dog ever in the OR and the recovery room. He is my little buddy and he has been taking such great care of me. You know the song “Mary Had a Little Lamb?” Well… that is the story of Scooby and me! Wherever I am… Scooby is sure to follow!

IMG_1758Scooby has been going through this entire recovery process with me. He goes with me everywhere… whether it is to a doctor, to the hospital to get my colon emptied, or even to Physical Therapy. The PTs even say that he is the mascot there. He is really adorable there because he sits right with me and helps me work out. He is such a smart and well-behaved dog… especially for a dog that is only 7 months old.

In fact, Scooby will be making his first plane ride when we go to Ohio… if we go. He is coming with us to Cleveland so I am really excited that I am going to be able to take him with me. I love him so much and I am so glad that I have him. There is nothing that I wouldn’t do for him. However, even though I love Scooby with all my heart and such… I have been looking for someone to take him. Sometimes I wonder if I am being ‘fair’ to him because of how sick I am. In addition, I also know that I may not make it much longer and I want to know that he has someone that would take him and he would have a good home to go to.

I really need to get to Cleveland because my disease is spreading and I desperately need my colon removed. However, even though it is booked and scheduled, it is all contingent on whether we have the funds or not.

When I fell and broke my hip/pelvis/femur in August… our finances really got hit hard. We were really struggling back then, but we are struggling even more now. When you have your health, you have everything. Due to the accident, we had to pay for so many things in order to help get me well. Between the equipment, doctor bills, and even the nursing aide bills… we literally went through everything. After all, I couldn’t remain alone at home and we needed to have a private nurse, which was very expensive among other things. So… all the money that was hopefully put aside for this operation had to be spent on the operation for my hip/femur/pelvis and for the recovery process.

So…. I am really desperate for help from others. I need donations more than ever because it has gotten literally impossible to pay for medical treatment. We are struggling so much and I can’t tell you how appreciative even a dollar is at this point because it is one less dollar that we have to come up with. My disease is really getting worse and I am like a time bomb that has been detonated and getting ready to explode.

Not only do I need to get this surgery done in Cleveland though, but I also need to get to Mexico so that I can have that ketamine coma that will potentially ‘cure’ me. IT is the only treatment out there that will cure my entire illness. However, it costs over $100,000 and of course we can’t afford it. Even though I have been getting ketamine here in the USA, Ketamine is considered a schedule 3 drug in the U.S., and as a result, only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. I have already met with the doctors down there and they said that I am the worst case that they have seen and had said how desperate I need this treatment.

This ketamine coma is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness. This coma is risky, but I am willing to do all this and everything at a chance for a normal life.

IMG_1797That is why I am begging for donations. I really want to live. There is so much that I want to do and have not done. I have been robbed of life and I want it back.  Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire!! Imagine having your body totally out of control and on autopilot all the time. Imagine having continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis. Imagine having no social life and your whole world being turned upside down with everyone walking out on you!! I try to smile and make it seem like it isn’t so bad, but living my life is like living in Hell.

I want my life back and I am really running out of time. The holidays are coming up and it would be a real miracle and great holiday present if I were able to get the necessary treatment that I need to save my life. I can’t remember the last time we celebrated a holiday because of how strapped we are financially. But if I got better, I would not be a burden to my family anymore and I would be able to become the doctor that I always dreamed of becoming so that I could make a difference in the world. We desperately need help paying for my medical treatment because not only can’t we afford the big trips to Ohio (which is quickly approaching and is scheduled for November 30th) and Mexico, but we also can’t even afford my daily meds or the treatments that I receive at home. Even when the insurance does pay, we still have copayments to also pay which quickly add up as well.

Therefore, if you can please spread this link for donations I would really appreciate it. There is no donation that is too small, and all donations are appreciative. Donations can be sent to www.gofundme.com/help4Fallon. If you have any fundraising ideas, please email and let me know at Femirsky@gmail.com.

Well… I guess I will be going because I have ketamine in the morning. Thanks again for all your continuing support.

Love,

Fallon

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October 31, 2015

IMG_0950Hi-

Well… I figured that I haven’t written in awhile and it was time for me to update everyone on what has been happening since so much has been occurring. I am also in desperate need of help and I thought that by sharing my story and all that I am going through currently… perhaps I might be able to bring in some much needed donations or prayers or even ideas to raise money because more people will know about me and my situation and perhaps be willing to help. I can’t tell you enough how much I appreciate all the help that everyone has already provided me so far. I definitely wouldn’t have made it this long if it wasn’t for your kind and generous hearts.

However, I am really hanging on by a thread and desperately need life-saving treatment soon. Between my illness (autonomic dysfunction, reflex sympathetic dysfunction, dysautonomia, and severe gastroparesis) and then the accident that I had (broke my femur, pelvis, and hip and had to have rods, pins, and screws placed all throughout me)… I am really not doing well and things are really snowballing out of proportion. I have really been trying to make improvements and trying my hardest, but I have been making an upward climb up a hill that I just keep sliding back down. Even though I have been working my hardest to get better, I need treatment that I can’t afford and desperately need. So I am really hoping that through you and others that I will be able to find a way to get it. If you want to make a donation, please feel free to do so at www.Gofundme.com/help4Fallon. Remember that no amount is too small and ALL amounts all appreciated.

IMG_1358I can’t believe that tomorrow will mark 3 months since I had that huge fall that drastically changed my life. Gosh… to think that I could have died or been bedridden for the rest of my life… it gives me the chills. I still remember that day as clear as ever. All the doctors were telling my head surgeon not to operate on me because they said that I would ‘die on the table.’ They even told him that if by chance I made it through the operation, I would never recover. But after waiting until the last possible moment because we only had a 48-hour time frame that we could do the surgery, my surgeon decided not to listen and give me a chance of life. I am so glad that he did because I would never have wanted to be bedridden for the rest of my life and that would have been the end result. So… now I became the ‘bionic woman’ because I had to have rods, pins, and screws put throughout me.

Everyone (including the doctor) is so impressed with how I made it through the surgery and how I am recovering. Never count me out is what I tell doctors. I should have been dead a long time ago… yet I am like the energizer battery because I keep going and going and going. Even the doctors are amazed of how I am still alive. Who would think that someone as sick as I am, as weak as I am, as emaciated as I am because I only weigh in the 60s, who’s body is basically on autopilot 24 hours a day, etc. would be able to live so long? But I still have so much in life that I want to do and still have to do before my time is up. I was robbed of so much because of this illness and I still haven’t done all that I have wanted to or need to do. I still have to become the doctor that I dreamed to be since I was a little girl and make a huge difference in the world.

So in the past 3 months, I have been trying harder than ever to recover from this surgery even though my illness is complicating it so much and making the recovery process so much harder. However, with having this fall, it has not just made my life physically harder, but it has made my family’s financial life harder as well. We couldn’t afford my treatment before when I just had my illness to worry about. Yet, now that I have this fall to recover from as well, it has made our financial problems so much worse because not only do I need treatments that will directly help the accident, but it has made my illness so much worse too. It has really made it urgent to get treatment because each day the illness is getting worse and worse.

Gosh… when you have your health, you really have everything. Since the accident, I have had no choice but to have an aide by my side every day because I constantly need help. I never thought that I was going to need so much help and have to need an aide to help me. But what stinks is that even though we pay an astronomical amount for insurance, we were not covered for the aide to be here. So we have been having to pay for her all out-of-pocket, which was extremely expensive and cost nearly a grand a week.

We weren’t covered until now. I can’t believe it took this long to get all the paperwork approved so that we can get somewhat covered and even with that… we still have to pay. But at least now we won’t have to pay the entire amount like before. But this week a new aide is starting too which should be about my age. I haven’t met her as of yet, but the social worker told me that she is about my age and she is going to push me and help me out in any way that I need. She told me also that she is very nice and everything. So we will find out soon.

In addition, I have been busy going to Physical Therapy, Acupuncture, and of course getting my colon cleaned out every week along with my ketamine treatments every week. Between all this stuff, I am basically busy every single day of the week. I have lost all my friends ever since I got sick because you really find out who your true friends are when you get ill and as a result, I basically have no social life. Therefore, my phone is just a way for doctors to get in touch with me. Instead of my calendar being filled with social events that are fun and such… they are filled with doctor appts and treatments. One of these days, things will be different and I will be able to regain the life that I was once robbed of.

I love going to Physical Therapy though. It is really fun for me because I feel kinda ‘normal’ by going. I pretend it is like going to the ‘gym!’ So when other people say that they are going to the gym to workout, this is my gym workout. I am trying my best to get strong and I have really been improving.

Physical therapy is hard work. Yet it is something that I am working very hard at. I go on the bike and try to work on that even though I can’t always pedal around 360 degrees because I am having a very difficult time bending my knee still. In fact today I even bench-pressed 30 pounds for the very first time. Of course my legs were trembling because they were so weak and I had an extremely hard time pushing off the ‘bench’ and the therapist was kinda holding me and pulling and pushing the chair with me so that I wasn’t doing it all myself, but it still felt good knowing that I was doing it (in a way).

This surgery was the worst surgery that I ever had and this recovery process has been so hard. However, once my brain finally registered that I had one leg instead of a rod and a leg… it really made a huge difference and was much easier. It was so weird because it always felt like I had two things going on in my leg. It always felt like I had a rod and then a bone in my leg. However, one day it was the weirdest thing because I just woke up and that feeling was gone. It was like my leg was back and I didn’t have two things in my leg anymore. It honestly felt like there was just my leg bone there.

I have been really petrified though of my leg and haven’t really looked at it. I am so afraid of something happening or having the rod come through or something. I am literally freaking over everything because I get a lot of pitted edema and swelling especially around the knee. I am so worried at times that the screws and nails are coming out when I turn the wrong way because I know that I am very fragile and the doctor even told us that when he did the surgery and were putting the screws into my bones that “it was like putting screws in butter.” It is so weird to know that they drilled right through my bone and put a steel rod through it straight down to my ankle.

However, I finally looked the other day in the mirror for the first time at my leg and it made me so nauseous. I am extremely emaciated and thin, so you can basically see everything especially since I have no muscle in the left leg. When I looked at it, it looked just like a steel rod. So it really made me sick. I also noticed that my left hip was significantly lower than my right. My left ilium and iliac crest is significantly lower, which is the side that I had the surgery on. Even though I broke my femur, pelvis, and hip… I don’t feel like one leg is shorter than the other when I walk. Yet when I look in the mirror, you can see that one side is significantly lower than the other. My back has been hurting me on the left side as well and after speaking to the doctors, they said that the this side being lower and the left side of the back hurting is all due to the left side being extremely weak and having no muscle tone. He said that when I get stronger it should go back up.

Wanna hear something? There is this tape that the physical therapists put on me called Kinesiology Tape or KT Tape. I call this my miracle tape because it helps so much with walking and pain. The therapist literally puts so much tape on me because I have so much pain and weakness everywhere that he always says how I use up all his tape and how I am ‘all taped up!’

I might need to go for surgery though to break up the scar tissue.   I am getting adhesions because of scar tissue buildup. Even though I have been working so hard to get better, I am having a lot of adhesions. In addition, the scar tissue that I am breaking up is also attaching itself to the tendons and ripping them as well, so it is also causing problems with that as well. So it might end up having to have surgery on them as well. As it is… I keep getting spasms from the tendons being ripped and the scar tissue breaking up. Every time something touches my leg or the therapist works on it… I get the worst shrill of pain that goes right through me. It is the worst pain you can imagine. I really hope though that I don’t have to go for another surgery.

IMG_1566Scooby comes with me all the time to PT. In fact, everyone there knows him, which includes both patients and the staff. They call him the ‘mascot!’ It is so funny because he loves going. He sits on the bed with me while I do my exercise and then follows me all around the room as I do my exercises on each machine. The staff has so much fun trying to feed him treats and play with him.

However, Scooby has been having some fear issues ever since we came out of the hospital. He spent the entire time in the hospital with me, which was about 2 weeks. During this time there was this guy that used to come right outside my room at about 1 AM to change the towels/sheets because the cart was right outside my room and whenever he came… he would constantly try to make noise to get Scooby to bark. Scooby is only now 7 months old so he was only 4 months at that time and he was frightened constantly by this man in a mask constantly trying to wake him up by banging on the cart at 1AM and waking him up from his sleep. So now Scooby is so fearful of people especially of men. We are trying to get him over his fear issues, but it isn’t so easy.

IMG_1622But Scooby surely loves me. He will literally follow me all over the place there. When I am on the table, he will do whatever he can to try to get up on the table with me. Even when I go for acupuncture… he will cuddle up right next to me and sleep with me while I have it done. The therapist even took a picture of us sleeping together. He really is some dog.

Scooby has been one huge help for me. Not only has he helped me emotionally, but also he has helped me physically as well. He has been pushing me so much to get better because I have to take care of him and he has to do things as well like go to school and everything. After all, Scooby is being trained as a ‘service dog’ and therefore, he has to pass his test. So even when I am in bed and unable to move because of the pain… we still work on all the stuff that he has to practice in order to pass the test. He has also gotten me to walk too because since he loves going in his stroller, I use his stroller as a walker. It is so much easier using the stroller to walk with rather than the traditional walker. They did end up giving me a different walker called a rollator, which has wheels and brakes, but it is so huge and heavy that I much rather use the stroller because it is easier.

My dad loves the new walker though especially when I go to the hospital for my stomach and when I go or the ketamine treatment. The reason he likes it so much is because there is a seat on this walker and therefore he just plops me on it and pushes me out. This way he doesn’t have to worry about me falling, walking slowly, or even carrying me and carrying the equipment too.

Speaking about hospitals and surgeries… it looks like we are leaving for Ohio right after Thanksgiving. In fact, we are scheduled to see the doctor December 1st. Scooby is coming with us and it will be his first plane trip. This is the trip that was supposed to happen in August, but we had to cancel it because I ended up falling and breaking my hip, femur, and pelvis. I am seeing the surgeon because they ideally want to do the multivisceral transplant because that is really what I need (getting a new small and large intestine, stomach, pancreas, and liver), but since this transplant is the most dangerous of all transplants and I am not in the strongest condition, they are going to probably just remove my colon and then try to hold off a bit in order to try to get me stronger for the transplant. We know the colon has to come out ASAP because it is completely dead and nothing moves through at all. In fact, that is why I go every week to the hospital. I have to get my colon cleaned out in the operating room because nothing really passes through and all the toxins literally are going into my bloodstream from everything just sitting there and rotting and going to my organs and shutting them down. Plus they are worried that the colon is going to rupture and I am going to go into sepsis. Then we will really have a huge problem on our hands.

So this will be some trip. Of course even though we have all intentions of going and are planning on going and have everything scheduled, it all depends on our finances as to whether we are going to be able to go or not. That is why I am hoping that I will receive donations and help because not only do I need it so I can directly receive medical treatment in New York and do physical therapy/acupuncture (I go 4 times per week and costs over $200) as well as get medications, I also need the funds so that we will be able to get to Cleveland. This is to save my life because I am really running out of time. I desperately need to get there and I also need all this other medical treatment as well.

I have been getting extremely sick lately with debilitating stomach pains. It is almost like giving birth in the sense that it feels like contractions because they start out weak and get stronger and stronger until they are unbearable… and then they will weaken again. It can last like for 2 hours and they are so debilitating. We have no idea what is causing them. I originally thought it was related to something I ate, but it wasn’t that. Then I thought it was because I was hungry, but it wasn’t that either. We just couldn’t figure out what it was. When I asked my GI doc, all he could say was, “That is why you need to get to Cleveland already and have that surgery!!”

We will bring Scooby’s stroller and he will have his own suitcase because he has clothes to wear as well too and such. We thought about putting him also in a carrier so that he could go under the seat and not be bothered, but we can’t find a carrier that will fit him comfortably because he is so long. Plus, he probably wouldn’t want to sit in the carrier under the seat anyway. So he will probably end up sitting in the seat with me. I spoke to the airline and because of the fact that he is a ‘service dog’ and everything … he can sit in the seat with me and not have to worry about having a carrier or anything.   So not only does my dad now have to worry about my stuff and me, but he also has to worry about Scooby too.

Wanna hear something hilarious? Scooby loves playing with his water bowl. One time I left him home and he decided to get back at me because he doesn’t like to be stuck at home. He likes to go everywhere with me. Anyway… he went to his water own and literally took his paws and splashed out all his water from his bowl. I came into the kitchen and thought it was my mom who spilled the water when she was giving the dogs the water and then when I refilled th water dish… Scooby ended up doing it again. He thought it was a game! He is such a little troublemaker especially when he doesn’t get his way.

Gosh… I can’t believe how things are literally taking a downfall. I really need help badly because things just keep magnifying and getting worse. Today is Halloween and it used to be my favorite holiday. You know thighs are bad when I don’t even cut open a pumpkin. I went from decking the house out in decorations in past years to just making sure that the pumpkin is carved (especially so that at the very least we can at least have the pumpkin seeds to eat because nothing tastes the same as fresh pumpkin seeds directly from the pumpkin even if it says that it is from the pumpkin directly in the supermarket). But I just haven’t really been in the holiday spirit this year. I guess with everything happening… I just haven’t felt like doing anything. I guess I probably will cut the pumpkin open some time this week before I throw it out just to get the seeds but that is about it. So much for my Jack O’lantern that I always make and proud to show people.

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But I did get Scooby a Halloween costume. I took pictures of him in it when I first got it and I refused to let anyone see it. However, since it is officially Halloween today, I guess it is finally time to reveal the pictures and show him in his costume. Scooby is going to be a clown and he is the cutest.

Well… I guess that takes care of everything for right now. I hope you have a really good Halloween. Gosh… to think the holidays are just around the corner. I just hope we don’t have a really cold and snowy winter. Well… thanks again for all your generosity, prayers, and encouragement. I can’t tell you how much I appreciate everything that you have done and continue to do. If you can please pass this letter along or ask others for donations or even think of other ways to raise money… I would really appreciate it. Remember… no amount is ever too small and all amounts are extremely appreciative. Until next time.

– Fallon

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October 10, 2015

12052459_10101700138885030_813121250079471442_oHey-

I haven’t written in awhile and I wanted to update you on all that has been happening. I also want to thank everyone for the endless amount of love, support and prayers that have carried me through the most difficult battle of my life, once again.

I know so many of you continue to take this journey with me and I want to continue to share it, but right now talking, writing, or even thinking about the past months is still a bit too overwhelming and my body and brain need to recover. So if I haven’t posted in awhile and my posts aren’t like they usually are… just please bare with me.

2 months ago I found myself back in a place I’d hoped to never be again… back in the hospital and fighting to survive! I ended up falling and suffered from a massive hip fracture, pelvis fracture, and a broken femur. I guess when I do something… I do it good. Even the doctors all said that this type of break is rarely seen. To think… it was all because I fell. But that is what happens when you are as ill as me and when your only 33 years old but your bones are that of a 90-year-old woman.

I was so very sick that the surgeon was literally told by every single doctor not to operate because I would never make it through the operation. They even said that if I did make it through it by luck that I would never recover. Yet, after contemplating what to do and also trying to boost me up the best that they could, the surgeon decided to operate at the end of the 48 hour window because that was all the time that was allowed before they wouldn’t be able to operate. But due to my severe illness, they decided that the safest way to have this operation was to be awake for it.

What a horrible surgery to have. When doctors hear the surgery that I had and then that I was up for it… they can’t believe it. All I was given was an epidural. Oh my goodness. I thought that I would never make it through it. The surgeons literally had to drill out the bones in my leg and insert rods through them, as well as place screws and nails through my hip, knee, and femur. I thought that this surgery would never end. In fact, when I was able to finally speak and the surgeons could make out what I was saying, it was the time that they were stapling me and sewing me up. The first thing that I said was “Get the F*** out of me!” I never felt pain the way I did during this operation!”

I remained in the hospital for the next 2 weeks. Thankfully my dad and Scooby remained right by my side as well. I must say that I wouldn’t have made it through without them. Scooby was the first dog ever allowed in the operating and recovering room. What an amazing dog Scooby is. I seriously don’t know what I would do if I didn’t have him. He really is a huge help to me!

I can’t believe that this happened to me. Not only am I officially the “bionic woman” because I have rods, screws, nails, etc. in me, but it has really taken a toll on my whole entire body and illness. I am now medically in worse condition than ever before and I desperately need treatment to save my life more than ever too. But unfortunately I cannot receive the treatment that I desperately need because I don’t have the funds.

My world has literally been turned upside down with this new problem. I am sicker than ever and I now need more treatments that I cannot afford. Time is ticking down on the clock before I detonate and I am racing against it. I desperately need help because my organs are shutting down, my bloods are dropping, etc.

I will probably never know or understand why this happened to me. I keep thinking what I ever did to deserve this. I just want a normal life. I was robbed of so many things and everything that people take for granted… like walking, eating, going to school, working, having a social life, working, going out, etc.… has been taken away from me. I know I have a huge road ahead of me I need to just focus on today, but it is so hard when the cards are constantly being stacked against you.

But I am still trying to get well. Trying my best to conquer this disease and not let it conquer me. I may have lost some battles, but I am hopefully going to win the war in the end. I just need some help from others because I can’t do it alone anymore. I need the prayers, support, and even some help financially from others if I am going to get better. I hope I am not asking too much, but even a simple donation of $1 is one less dollar than I have to come up with and one less dollar that I have to pay for treatment to save my life. So if you can contribute anything, help me with a fundraiser idea, or even spread word of this and my website (www.gofundme.com/help4fallon) I would greatly appreciate it. Gosh… its not like I don’t have enough to worry about. With all that I have to worry about with my body shutting down and everything… worrying about money issues and where I am going to find the money for treatments should not be one of the things that I should have to even consider or think about. You know? How am I supposed to totally focus on my health and putting all my energy and power and focus into getting well when I have to worry about finances and how I am going to pay for the treatment that is going to save my life? It shouldn’t be like this. After all… I am weak enough. I am not strong enough to be able to worry about all this extra burdens. How much can I handle before I officially break?

I have been really trying to get well though. Gosh… I never thought it would be this hard. I can no longer be by myself at all, which means that I have to have a ‘nurse’ with me at all times. Yet, to have someone in the house is so expensive and the insurance isn’t covering it. Just another expense on top of the other expenses. It just continues to snowball. The bad part though is we don’t know how long we are going to be able to keep having a nurse, which is something I desperately need because of the cost of how much one costs. Money doesn’t grow on trees and there are limits to limits. With not receiving help from others, it really severely limits what I can and cannot do and it really jeopardizes my health. So I have to really prioritize what I need and don’t need

11229360_10101696893064680_8021471742043903980_nI have been going to Physical Therapy 3 times a week and trying to get movement in my leg again. And to think… Scooby is with me every single time. He really helps me get through it! It’s so difficult especially when I know there is a rod in my leg. Every time I fall or I turn in the wrong direction or feel something new… I always freak and think that a screw or nail is coming out. Even though the surgeon and Physical Therapist said that there is ‘nothing to worry about,’ I still do because when I had the surgery the surgeon said ‘it was like putting screws and nails into butter.’ Knowing that he compared my bones to butter… it really freaks me out. Plus with the way my entire body is and how fragile I am… anything is possible.

The hardest thing though has been getting over the feeling that I am walking on sticks. It took my forever to feel like I had a ‘leg’ again. I kept feeling that I had a bone from the leg and then a rod next to it. But then one day it just registered that my ‘leg’ was back and the rod and leg was one. I can’t tell you enough how good it feels to actually feel like I have a leg back!

So I have been trying to make improvements with physical therapy. I am in a real battle though because I am basically in a no win situation. In order for me to get better from the broken hip, femur, and pelvis… it really aggravates and makes my neurological illness worse. That is why it is really important to seek treatment and be able to treat my illnesses as well because not only is it causing me added pain but it is also spreading my disease and making me deteriorate worse (just in a different way).

Unfortunately in order to recover from the breaks, I need to do certain things like really put pressure on both legs, wear a shoe on the left foot, put tape on the legs, etc. which all cause havoc to my illness. I am extremely hypersensitive and doing all this causes real pain to me. Yet, if I don’t do this, I won’t recover because I need to put pressure on both legs in order for the breaks to set properly and for blood flow to resume in those areas, which will also further heal the breaks.

I am really trying to do as much physical therapy as possible. I try to bite my tongue and push through the pain as much as possible because I know how important it is to get through it. I know that I am also going against a clock because if you don’t do it in a certain amount of time not only will my disease spread and take over so that I will never be able to walk or be touched or anything in the leg and more because my disease especially spreads not only through ‘trauma’ but through something be immobilized, but the scar tissue will build up too much and I will then be permanently paralyzed in this position as well. So if I don’t want to lose function of my left side, I really need to do this.

So I try to do the exercises as much as possible. Even when I sleep or sit in a chair or anything else… I always sit with my knee bent because my knee is so stiff from the rods, nails and screws and I can’t bend my leg. So we have really been working on bending my leg.

Besides PT, I have surgery on my intestines to clean them out every week. I still have to go to Cleveland to have my colon removed, as my entire GI track is dead because of my gastroparesis. In fact, I should have been there in September if it wasn’t for this little accident that occurred. But in the meantime, I am going every week to the hospital to have my colon emptied because nothing moves through and as a result, I am filling up with toxins from everything that is sitting in the colon and not moving. They are also worried that I will end up going into sepsis because of this.

This is just one more thing to worry about. With all the new expenses that we have to pay for and it isn’t like we even had the funds before… we don’t really even know how we are going to get to Cleveland to have this operation. Dad and I were talking tonight and we were saying how desperately we needed to get to Cleveland as soon as possible, but we don’t know how on earth we are going to afford it because the little money that we had before (which wasn’t even a lot before and probably wouldn’t have even covered the expense before) is no more. So we are really in trouble. We really don’t know what we are going to do. So we are really hoping that perhaps something might come along… that a fundraiser will work, I will perhaps receive a lot of donations, etc. We are just praying something will happen. That is all that we can do right now.

In addition, we go for ketamine as well once a week. Not only am I given the ketamine through a whole day infusion, but also I am given ketamine in form of a block into my spine. I ideally need to get to Mexico because the amount of ketamine that I need (especially now because I am so much worse) is not FDA approved, but since I don’t have the funds for that either, this is the only option that we have. Although this amount isn’t enough to ‘cure’ me we are hoping that it will at least help with stopping the progression or slow it down, as well as help with the pain.

Gosh I really gotta get better. This has been horrible. I have a hospital bed in my living room and all I want is my life back. I am just praying that it happens!

On the bright side, I finished reading my first book in a long time. I can’t tell you the last time I actually finished a book. It was from my favorite author, Sophie Kinsella. I finished it just in time too because her new book is coming out the last week in October. I am now reading another book from my other favorite author, James Patterson. It is called “THE MURDER HOUSE!” His books are usually fast reading so I am hoping to be finished with it by the end of the month so that I can read Kinsella’s new one called “SHOPAHOLIC TO THE RESCUE!”

My parents’ anniversary is quickly approaching. They are going to be married for 40 years. I really want to make it extra special for them, but my hands are tied. They are really special parents who have done so much for me and deserve the very best. I can’t thank them for all that they have done for me and can’t tell them enough how much I appreciate it too. I feel so bad for all that I have done to them because they definitely don’t deserve this. They should be at the point in their lives where they should be enjoying themselves… not having to suffer because of me. They shouldn’t have to be burdened with problems because of me. So I really want to do something nice for their anniversary even though I can’t really do much and I am short on funds. I do have some ideas for something though, but I am not going to say right now because don’t want to ruin the surprise just in case mom and dad see this. But it is the ‘ruby’ anniversary and I want to make it special!

Halloween is also coming up. It used to be my favorite holiday of all times. I used to be the first one to go out and decorate the house and get the pumpkins and everything. I used to deck the entire house out with so many decorations from spider webs to corn stalks to hay to statues to tombstones to pumpkins to so many other things. I even went to get the hugest pumpkin that I could find to carve. Yet, you can see how things have changed because I don’t even have the energy or desire to do that anymore. Even to cut open a pumpkin and to make a jack o’lantern doesn’t intrigue me anymore. Of course I will still do it because it is a tradition and this is the only time when you can get pumpkin seeds and they taste the best. When you get pumpkin seeds in the store… they never taste the same. So… don’t want to miss out on that.

But I do have to say though it doesn’t even feel like it is Halloween approaching. I look at other houses and don’t see decorations like I used to when I did growing up. I remember always seeing other houses being decorated… even if they just had pumpkins outside. Where did everything go? Each year it seems like there is less and less trick-or-treaters and less and less people decorating. I don’t know but it seems like holidays are just getting less and less in celebrating. People aren’t into the holiday season anymore!

But I must say that Scooby is all set for Halloween. Scooby of course has a Halloween costume. I am not going to spoil it though and tell you what it is or post a picture yet. You will just have to wait to see it. I must say though that he does look adorable in his costume though. I can’t wait for him to wear it.

12017537_10101691928169370_7924967996628648251_oScooby is really an awesome dog. He has been going everywhere with me. He does so much that he literally zonks out in the car all the time!! He is so funny because he acts like he has such a hard life!!

Well… I guess I wrote enough. I just wanted to give an update as to what is happening. Today while the road to get back to where I want to be seems long and I feel weak, I am still here with another chance to regain my life. I am certain that with the help of my incredible family, friends, dedicated doctors and supporters that anything is possible. I just hope that I get the opportunity! I can’t do this alone and therefore, I am hoping through the support of my family, friends, and supporters that I never will have to. But I really need as much help as possible in getting funds so that I can get the lifesaving treatment that I desperately need. No donation is ever too small. Please spread the word of my website (www.gofundme.com/help4Fallon) because my life depends on it. Thank you again for all your love, prayers, and support.

Love,

Fallon

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September 20, 2015

12002080_10101683496446610_2737980673093927629_nHi-

It has been some time since the last post and therefore, I figured that I would write a little and update you all on the latest that has been happening, as well as ask you for help/ideas because I desperately need so many things in order to get well and continue to stay alive and unfortunately we can’t afford it by ourselves.

Things have really been snowballing. One of the reasons I was suffering and dying before was because I couldn’t receive the lifesaving treatment that I desperately needed because I didn’t have the funds. However, now that I have had this accident, it has only made things worse because I need more treatments than before, and my illness has also been exacerbated because of it.

I really don’t want to be sick any longer, and I especially don’t want to die. Yet, I know that unless I get help from others it is not going to be anywhere in the cards that I will be able to get better. So I am only hoping that you will be able to help me whether it is by donating (there is no such thing is ‘too little an amount’ because even a dollar <$1> will make the hugest difference.’ I know that money is hard to come by and people l really don’t want to part with it because they need it too, but I can’t stop thinking that if people would just even give me $1, the world is so populated that it would add up quickly and I would be able to continue to receive the current treatments that I have been going for as well as be able to and also receive the life saving treatments that I desperately need. But like I said… I can’t do it without your help.

I have been trying so hard to get well but every time I try to get well… I keep hitting a brick wall. I just want to get well so badly because not only am I suffering so much with all that is happening, but I really want to regain my life back and live ‘normally’ like everyone else. There is so much that I was robbed of and I have so much that missed out on that I can’t wait to do it all.

I don’t want to sound like a ‘’beggar’’ for money, but I really don’t want to die. I have so much that I want to do and have so much that I haven’t done yet. I also have so much that I can give to others and to the world that my time here is not ready to be over. So if you have any ideas on how I can raise money or how I can get my story across, I would really appreciate it. I really don’t want to die and between being so ill before and with the accident exacerbating everything… I need help more than ever and NOW because I am seriously out of time!!! My insurance company also doesn’t pay for the aide (nurse) that has been staying with me and as a result, it has been costing us an arm and a leg. Yet, I am too ill to stay by myself and therefore, I also need this service as well. So as you can see the bills just keep adding up and up and we desperately need your help so we can continue with the current treatments and of course so I can get the treatments to save my life.

11233419_10101684851111850_5580505221127502952_oWell… I guess I should tell you how I have been doing lately. Scooby has been the greatest companion ever. He has been staying with me and keeping me company. He also has been great in helping to take the pain away. I can’t tell you enough how helpful he has been. I don’t think that I would have made it this far without him…let alone the operation and hospital. I still can’t believe that the surgeons let him into the operating room and recovery room with me.

Scooby is the absolute greatest dog. He was the first dog ever to go into the operating and recovery room. The doctors were like “this is a first!” I never thought in my wildest dreams that they would have allowed him into the room. But I guess with everything that I am going through, they wanted me to be as ‘comfortable’ as possible. I must say though… to be honest… it really made a significant difference.

I think the doctors let him into the operating room and recovery room because they knew how sick I really was and they wanted to make me as ‘comfortable’ as possible especially since all the doctors in the hospital and even my current doctors were telling the surgeon ‘not to operate on me because I would die during the surgery or even if I made it through the surgery… I would never recover!’ I really was and am so very sick, fragile and unstable and therefore nobody thought that I would survive this major surgery. After all, my organs are failing including my major organs such as my heart, my bloods are horrible, my weight is only in the 60s, etc. But I can’t thank my surgeon enough for not listening to them and going with his heart and helping me. I am so glad that he took the chance and operated because if he didn’t, I would have been bedridden the rest of my life and that was the last thing that I wanted.

After all that had happened with me with these illnesses, there was no way I was going to be bedridden for whatever time I had left. I rather have taken the chance of dying than to end up confined to a bed. But this operation was going to be a major operation for anyone (even the normal person), so you can only imagine how much worse it was on me. After all, I broke my hip, pelvis, and femur.

With my condition being the way it is, the doctors tried to make me as strong as they could prior to operating. They only had a 48 hour timeframe before they couldn’t operate so we really on the clock. So during this time they tried to pump me with has much nutrients and bloods as possible to try to make me as strong as possible to survive the surgery. In addition, when I had the surgery, I was not able to go under general anesthesia like a normal person because it was too dangerous with all my complications. So this surgery was real hell because I was up for it and only given an epidural. Then you wonder why they allowed Scooby into the operating room and recovery room.

11958251_10101674833058110_1348539060937095946_oWhen I tell doctors that I was up for the surgery and only given an epidural, they really feel for me. They say it is the ‘worst’ surgery to have and to be up for it… it’s a killer. I still can’t believe I made it through that operation. As soon as I was able to talk, the first thing that I said was “Get the F*** out of my leg!” I never felt pain so badly. Even though I was up during the operation, they really couldn’t make out what I was saying until they were stapling/sewing me up. But boy… when they could understand me… I was screaming for them to get out. It was sooo painful!!

All I wanted was to see Scooby when I was in the operating room and recovery room especially after I was able to hold him. But as soon as they were done, they brought him right to me (just like a mom got her baby after giving birth) and I was able to hold him. They brought him into my arms and let him lay on the bed with me. I was so relieved. I never thought they would have allowed him into the recovery room like that especially when there were so many patients around also recovering. But Scooby really behaved himself and I really have to say that he made such a huge difference. He really helped with the pain even though I was still in tons of pain. I know that if I didn’t have him… it would have been so much worse!!

Scooby stayed the entire time (the full 2 weeks) in the hospital with me. Everyone got to know him and he became like a celebrity there. In fact, Scooby knows all hand commands and one time a doctor came in and was talking by also waving his hands and as a result, Scooby was going kinda nuts. The doctor asked, “What is wrong with him?” I had to explain to the doc that he is using his hands to talk and Scooby is just following his hands because he knows hand commands.” It really was funny. Not only did he become the most widely known person/dog in the hospital because everyone knew him and asked for him, but even the doctors would come into the room and first say hello to Scooby before checking me out. Scooby was so popular in the hospital that everywhere he went you heard “There’s Scooby!!”

12002564_10101684849594890_1176039086314648181_oScooby really is a special dog. He helped me in the hospital, and he continues to help me now. When I go to Physical Therapy, he goes with me. Everyone loves him there and he even actually helps me doing my therapy believe it or not. Scooby also turned 6 months old and he is so smart for just being a little pup!  However, little does he realize that this week he is losing his manhood!  Someone is going to be neutered.

I have really been pushing myself to try to get well. I don’t want to be sick and want this behind me already. So I have been trying so very hard to walk and bend my knee and be back to my old self. But unfortunately, not only do I have to recover from this operation, but also it has really exacerbated my neurological illness and therefore I have to deal with that as well. Therefore, the pain is worse than it should be, my leg has such pitted edema and they look like elephant legs because they are so fat (they are so filled up with water that they weigh so much that I can’t lift them), and the discoloration is horrible (they are turning black and feel like I am being strangled to death. The doctors already were nervous that I had a clot in my legs and ruled that out). Although the pitted edema is getting better, I still have a long way to go.

I just want to get better so badly that the doctors say I am ‘pushing to fast.’ I have already fell a couple of times and thank goodness I haven’t broken anything. I am so scared that something happened when I fell, but thankfully nothing has. I just want this all behind me already!!

I am having a problem with knowing that I have rods, screws, nails, and plates in me. I get so fearful of them and the doctors think that I am thinking too much of them. I am so afraid that something is going to happen with them, but the doctors said that I need to not think of those pieces in me. They say I just have to think that they are part of me. It’s hard to do that especially when they said to me and my dad that when they were operating that drilling screws into my bones was like drilling into butter.”

The PT people call me WOLVERINE now. I have had many nicknames such as “Energizer Bunny” because I keep going and going and nothing gets me down. But now they call me WOLVERINE because I am sooo strong with all the hardware that they put in me that I can’t break. The doctors literally drilled out my entire femur in the center and inserted a metal rod through the core. So I have a really strong left leg because the bone is around the rod and then I have plates and screws too. They call me that because its to get me over me thinking that I am so weak and going to break if I move because I am so scared that something is going to happen to the hardware.

12003253_10101680110147780_1794890129460331441_nWanna hear something? I know this sounds bizerkus but it is soooo true. The PT end up putting this tape on me that really helps with the pain and helping me with the edema and making my walk more stable. I know it sounds weird how a piece of tape can do something like this, but it does. It has something to do with how they place this ‘magic’ tape and it really works. It’s amazing.

Besides that… nothing is really doing besides that. I am just trying to basically recover. My bloods have fallen further and even my blood count has fallen as well. I found out that this is partially due to the surgery because I lost a lot of blood during it.

I have so many appointments and treatments to undergo each week. Between Physical therapy 3 times a week because they are trying to break the scar tissue up and keeping me as limber as possible, going for ketamine every week, and going for surgery every week to clean out my intestines they don’t rupture and I don’t go into sepsis… there is never a dull moment. I need to have physical therapy because if scar tissue builds up and they don’t bend my knee (which I can’t bend right now), then I will also end up looking like a chicken leg. I also have to have my intestines cleaned nothing moves and if I don’t have them cleaned… toxins will continue to build up and I also risk rupturing my intestines and going into sepsis. I still need to go and have my colon removed, which would have been done if I didn’t have this accident happen.

My doctors can’t believe that I made it through the surgery and I am recovering. They never thought that I would. But… nothing gets me down. I am like the Energizer Battery… I keep going and going and going. Now I just have to get better so I can walk and get over my illnesses.

So I am really hoping that you will help me achieve that. Please help me get my message across because I desperately need help in receiving treatment that will not only get me better, but it will save my life. I also need help just in my current living situation such as having an aide because I can’t stay myself since I need so much help especially now, but unfortunately we can’t really afford it anymore and my insurance company isn’t helping. Insurance is great when you don’t have to use it.

So if you can please spread this message and tell others of my donation site (www.gofundme.com/help4Fallon), email me (femirsky@gmail.com) and let me know of any ideas that you can think of in getting to raise money for treatments, or even if you can personally make a donation, I would really appreciate it. Remember, no donation is too small and any amount (even $1) is much appreciated!!

Well… until next time. Thanks again for all your support and encouragement and prayers. I can’t tell you enough how much I appreciate it. It really has and does make a huge difference.

– Fallon

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September 6, 2015

11924820_10101653067022420_8679260647875515605_oHi-

I haven’t written in a while and I thought that it was time for an update on all that has been happening especially since so much has been occurring and life has been so much harder than usual. I am in the biggest fight for my life right now because not only am I battling this war with this life-threatening illness that desperately needs a turnaround as soon as possible because I am like a ticking grenade ready to explode, but I now have this added problem of having a broken hip, pelvis and femur that not only debilitates me but makes my illness so much worse and also jeopardizes my health. Never a dull moment when it comes to me.

Gosh. I can’t believe how I can never catch a break. There is always something going on and it just continues to get worse and worse. It is bad enough that I need so much help from others to save my life from the life-threatening illness that I was suffering from before all this happened with my hip, but now I need even more help from others because of this stupid disastrous accident.

I can’t believe insurance companies. You pay so much for health insurance and yet, it pays for absolutely nothing when you really need then. It is like they don’t care that you are going to ‘die’ as long as they can save a dollar. It just isn’t fair. Unfortunately now with everything going on now with my hip, femur, and pelvis, I desperately need your help because I need treatments for this now as well, which I cannot afford nor is it covered by my insurance. I also need a home nurse that we can no longer afford, and I fear that I will really die without the home nurse because of all the complications that are arising. I never thought it could get this bad.

As I told you in a previous blog, I ended up falling and breaking my hip, femur and pelvis. The way I fractured these bones is like an impossible fracture to be done all at once especially from the fall I had, but due to my illness and how poor my bones are… anything is possible. As a result, I ended up having to go for emergency surgery and had to have plates, screws, nails, and even a rod placed in me. It was a huge surgery and due to my illness and how poor my health is already, the surgeons had to keep me awake during the surgery. Oh my gosh was it such a terrible surgery. When I tell my other doctors about how I was awake during the surgery and how I all had was an epidural, they can’t believe it and say how I am such a ‘trooper’ because I have heard from multiple doctors that this is one of the worst surgeries to have and it was made even worse because I was up.

Never again do I ever want to go through this again. Thank goodness when I broke my hip the first time a couple of years ago that I was able to recover without surgery. I was on complete bed rest for like 2-3 months and thankfully I healed. The doctors were so relieved because they didn’t want to operate due to my illness and current condition because they knew how dangerous it was for me to have the surgery even back then (about 5 years ago). They didn’t know if my body would take the surgery because of how frail and skinny I was and everything. But luckily being on bed rest for all that time saved me from having to go through surgery. Thank goodness I was so ‘light’ too because I was able to have my dad carry me around because I couldn’t walk. It was the one time weighing so little was in my favor.

But unfortunately this time I wasn’t so fortunate. I had no other choice but to have the surgery because I would be completely bedridden for the rest of my life if I didn’t have it. So even though I knew this surgery was such a big risk and even though all the doctors were telling the surgeon that I would probably not make it off the table and I would never recover if I did make it through the operation, I knew that I had to chance it because I didn’t want to be bedridden for the rest of my life. After all that has happened to me… this was the last thing that I would want. So I had to chance it and whatever happened will happen.

Well surprise surprise. Look who made it through the surgery and is still here. I am such a fighter and the doctors can’t believe it. However, now that I made it through the surgery, I am in the biggest fight for my life now because I have to recover, which I cannot do without your help. Not only is this recovery hard in general, but it is made so many times harder when you suffer from the illnesses that I already suffer from because the neurological illness and autonomic dysfunction make my nerves stay on autopilot and give me so much pain. It really causes me severe pain, pitted edema, and stirs up the autonomic dysfunction badly. One thing just triggers the other thing off. I also have really bad circulation and I am risk of losing my leg because it is depriving my leg and the tissues in it of blood and oxygen. I am just a mess. Then because of the extreme gastroparesis I can’t absorb the nutrients that I need to heal, which is a major problem as well.

To make matters worse, I have a huge bedsore on my butt because of sitting/laying on it. It is so bad and the doctors are extremely worried about it. They are so scared that the bone is going to come through. I have no fat on me whatsoever and therefore, my tailbone protrudes which caused the bedsore. Then when I have to move such as to get in and out of bed or even to adjust myself, I end up spinning on it like a top because it sticks out like a horn or a tip to the top. You know?

I have been having Physical Therapy at home too during this time because I need to break up all the scar tissue, learn how to walk again, and stretch out the leg and hip and everything. Oh my goodness I didn’t realize how hard it was going to be. All I want to do is bend my knee already and it is so hard and impossible to do. So it also makes sleeping impossible because I always sleep in the fetal position and since I can’t bend my knee, I can’t sleep like that. In addition it makes sitting in a chair and getting up in a chair even harder too because I can’t bend my knee. It is like I feel like I am all taped up and I have sticks that are unbendable in my leg.

So the PT has been trying to bend it and break this ‘stick’ feeling. It is so hard because I literally see stars.   The first time she did it, I gave her such a scare because I looked like I was going to pass out. I have a high tolerance of pain and I keep pushing myself to the max because I know that if I don’t push than I am going to end up looking like a chicken leg (all stuck in that position) because the scar tissue will build up. So I have to push through it. I have a motto that I go by, “Pain today means more limber and better tomorrow!”

But this first time really gave her a huge scare that she wanted to call an ambulance. I was like, “Under no circumstances no 911.” I said it because I knew that if I had an ambulance called that I would end up going to the closest hospitals, which are such horrible hospitals. However, I found out that I am now part of a program that if anything should happen to me and I need to get an ambulance to a hospital, I can call for a certain ambulance (which is not private and called North Shore Ambulance) and they will take me to any hospital I want whether it be LIJ or Manhasset. Those are much better hospitals than the ones by house. We even have a joke with the hospitals by my house, as we say, “you check in but you don’t check out!”

IMG_0735I also recently went for blood workup and my bloods are worse than ever. My organs are failing worse than before. I am anemic, my hemoglobin and RBC are very low, my pancreas is inflamed, and my liver is giving me problems. I found out also that from this surgery that I lost a good amount of blood too. To complicate matters more, I have severe pitted edema still. My legs will literally swell up and they are so painful.
I also found out that whIMG_0747en I get into a lot of pain my entire body goes like it is going to die. I get the chills like crazy and I feel so weak. I don’t know why this is the case or why once I get the pain medicine in me and the pain alleviates that I warm back up and regain my strength and composure.
11953177_10101658267690240_1464633348457082424_nI have been busy going for my ketamine treatments.  After all, I desperately those treatments because ketamine is hopefully holding my neurological disease under control. My disease would be spreading like a wildflower (even faster than now) if I wasn’t having the ketamine.  That is why I need to get to Mexico.  Since my case is so severe, the amount of ketamine that I require is way too great than FDA approved in the US.  Therefore, in Mexico, I would be able to be placed in a coma and given that amount of ketamine that I need– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.  It is my goal to get there, as it will potentially ‘cure’ me, but as of right now we cannot afford it because it costs close to $100,000.  So we are stuck going for the ketamine here in the US and hopefully the littler amount even though it won’t ‘cure’ me, it will at least stop or slow down the progression of the illness.

I have also been having a nurse stay with me everyday. I would never be alive today if it wasn’t for her. There is no way that I can stay by myself and with all that is happening to me, I desperately need her help. My parents obviously have to work and therefore, I need someone to stay with me since I am basically helpless.

11224848_10101666676399120_619847044199447606_oBesides her helping me with the dressings for my wounds and such from the actual surgery, I also have this huge bed sore that needs attention to. They are so scared that the bedsore is going to get infected or the bone is going to pop through. We have been putting various types of treatments on it, but it is a stage 3 bed sore. A stage 3 bed sore occurs when a full layer of skin is destroyed. A stage 3-bed sore pressure sore or decubitus ulcer extends into the underlying subcutaneous tissue layer, but not all the way to the bone. This subcutaneous tissue layer has a relatively poor blood supply and can be difficult to heal. A stage 3 bedsore reaches, but does not go through, the muscle.

But I desperately need your help. Unfortunately my insurance company will not pay for my nurse and I cannot be without her. I will literally die without her because I cannot be left home alone especially when I am so helpless, I can’t get in and out of bed, I can’t really do for myself, and I need my dressings changed. Just from the surgery I had over 50 staples and even though it is about a month after I had the surgery, my wounds are still not healed. I can’t heal like a normal person so it complicates things and takes me longer. Even the stereo strips that are supposed to fall off when you are ‘healed’ are still on me.

I also need the nurse because I need help with this bedsore before it gets worse. I was already told how it can easily get infected or how it can literally takeover my entire butt. I really can’t have that happen. If you have any suggestions or secret remedies to get rid of bedsores, please let me know. It is really urgent and important. You can email me at femirsky@gmail.com.

But as I stated before, my insurance company will not pay for the nurse to stay with me and even though we have managed to pay for her up until now, there is no way we can continue to pay for her because it comes out to close to $1000 a week. I desperately need help with the funds because my parents can’t take off work to care for me and I cannot be left alone.

In addition, my insurance company only pays for so much. All the bandages that I needed I ended up having to pay for completely as well, which were not cheap either. The insurance did cover some of the bandages, but by the time they give the authorization and approve it, it is already too late because I need the stuff already. They take such a long time to approve the very few stuff that they do pay for that I am stuck paying for it ahead of time because I need it and can’t live without it.

Besides that, I also have to pay for my treatments as well. However, even with the few treatments that they do cover, I still have to pay the copayments as well and since I am going through so many types of treatments because they are greatly needed, the money is just going out the window like crazy because even the copayments are not cheap and add up very quick on top of everything else.

I hate to be a crier or a beggar, but I desperately need your help. I am trying to recover the best that I can, but everytime I try… I keep hitting a brick wall. I keep trying to pick myself up and continue on, but its literally getting impossible. Without getting the help from others so I can continue my current treatments and be able to have my nurse… I can say one thing for sure is going to happen… I am going to be down for count for good. So please help.
Any help that you can give would be much appreciated. If you can please donate or pass the word on… I would really appreciate it. Please help me because it is bad enough I am in battle with my life-threatening neurological illness, which is being made worse and worse each day because any time there is trauma to my body it spreads my illness and exacerbates it immensely, which is something I definitely can’t afford because I am walking a tight rope already that is ready to snap. The doctors are already upset that I am not getting to the Cleveland Clinic to have my colon removed and removed because it is desperately needed, as my intestines are paralyzed and I can literally rupture my intestines or go into sepsis because everything is that I intake (meds and food) are just sitting in my intestines. But unfortunately I have to recover from this hip/femur/pelvis surgery first before I can do anything else. Hopefully I will make it.

So we are trying to do whatever we can to save my life. But like I said before… I desperately need your help. Please help me. If you want to donate or spread the word, the link is www.gofundme.com/help4Fallon.

In the meantime, I have been trying to keep myself busy and keep my head above water. The pain has been so intense that I am also trying to keep myself busy so I don’t have to feel it. So I have been trying to do some reading and coloring and playing some iPad. I am reading a book from my favorite author right now, which is called FINDING AUDREY by Sophie Kinsella. It is a really good book. I can’t wait to read her new book that is coming out in October called SHOPAHOLIC TO THE RESCUE because I read the whole series and love it. I also want to read and have gotten the new STAR WARS: THE FORCE AWAKENS book. I am such a STAR WARS fan and can’t wait to seethe movie. I saw the new toy that is out, which is the robot (BB-8 Droid) that works by the phone, voice, etc. and it is something that I definitely want. It looks so cool, but of course it is too expensive. When I was younger I ended up buying this robot because I thought it would do so much for me and thought it would be really cool and awesome to have… only to find out it was a complete dud. My mom will never let me live it down that I thought that the robot was going to do so much for me.

My mom is trying to keep my spirits up. She just bought me this gummy worm that is supposedly 3 feet in length. Can you imagine? I can’t. So she said that she was going to get it for me. It is also supposed to be 4000 calories so maybe as an added bonus of besides it being so cool and everything… I will be able to gain some weight.

11900102_10101666903014980_1871221040620096638_oDad’s birthday is this week and I really want to make it special for him especially after all that he has done for me. He is really my best friend, hero, and my world. I definitely wouldn’t be here today if it wasn’t for him. He is my rock and I really want to get better the most for him.

11885661_10101656119999230_4675645880702199674_oScooby has been so tired taking care of me. I don’t know what I would do if I didn’t have him. He really makes me feel so much better. I love that dog so much!!

Well… I guess that is about it. I am trying to do my best to get better, but this is extremely difficult… especially when you are so weak and fragile to begin with and you have horrible life-threatening illnesses to begin with too. I really just can’t catch a break. But like I said before, any help that you can give me would be much appreciated. Please help me because I can’t do this without your help. I desperately need treatments and I desperately need to have my nurse. Please donate and please spread my donation link at www.gofundme.com/help4Fallon.

Love,

Fallon

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August 20, 2015

11807547_10101636289659390_6510440443741964442_oHi-

Sorry I have been so out of touch, but I have had so much going on in my life. I am writing today only because I want to give you a brief update as to what has been happening lately since so much has happened since the last time I wrote. I know that this is going to be very brief, but please understand where I am coming from because after I tell you all that happened, you will understand why it is so short.

Unfortunately there has been a HUGE accident lately. I never thought that this could happen to me and I am now in the biggest battle of my life. I desperately need your help in any way that you can provide…. Such as support, friendship, donation, etc. because right now I am I the biggest battle of my life. Just when I thought it couldn’t get any worse… it can.

I guess I should stop stalling and spill the beans already. I have had an accident in the kitchen that has left me with a broken hip, femur, and pelvis. The doctors said that to get the fractures that I did… it is literally impossible. But because I am so sick already… anything is possible with me.

Who would have thought that Saturday would have ended up so badly? I was having such a good day too. I actually got ‘made up’ earlier that day with my hair and nails…, which is a rare occasion and even Scooby, had taken a bath and was groomed nicely. To top it off, I also met a great friend who suffers with one of the rare illnesses that I do! I felt on top of the world. However, that was going to change in a matter of hours.

11223566_10101630995289350_8310922524986246995_oWhen my parents came home from work, we were going to have lunch and what do you think happened? I was really happy for a change because of the wonderful day that I was having for a change and when I was coming for lunch, one of the dogs came running out of the kitchen and knocked me down like a bowling ball. It wasn’t Scooby, who is tiny and a little cockapoo. It was Max, my puggle that weighs almost as much as I do, as he weighs like close to 50 lbs.

Gosh if I can turn back the hands of time I definitely would. I would do anything not to have this. I am now in the biggest battle of my life because not only now do I have to overcome these fractures, but it has completely worsened and exacerbated my neurological disease/autonomic dysfunction). So I desperately need your help in getting donations because I desperately need treatments to save my life and we definitely cannot afford it. It is even at the point where I cannot even be left alone and we need money for aides and everything else. Everything is just horrible and I never thought it could get so bad,

After the fall, we went directly to the hospital. For me to say to ‘take me to the hospital,’ you know it had to be bad because I never ever go to the hospital because they cannot ever help me. But this time I had no other choice. I knew something was wrong. My dad wanted to call 911 and get an ambulance because I couldn’t get into the car, but I knew that would only leave me in a hospital that I would really be in bad shape at. So I knew that I would at the very least have to force myself into the car so that I could at least get to a somewhat decent hospital that could somewhat take care of me. There was no other choice.

11845233_10101650824261930_1404286455280476864_oOf course I brought Scooby with us. Scooby comes everywhere with me. He is my security dog and when I had him in the hospital, he made a world of difference. You can’t imagine how much he helped with the pain and how he helped me to do the stuff that was unbearable because I knew that I had to be strong for him and he was there to take care of me too . He is one amazing dog.

He is so smart, so well behaved, and so loving and caring. Everyone was shocked with how well behaved he was and how great of a dog he was. Everyone was calling him a ‘little teddy bear’ and coming to see him. He was really keeping me calm and he also knew where it hurt and protected me too. He was something else.

When the doctor came in, he said that I had broken my pelvis, hip, and femur and that the only thing that I could do is have surgery. He said that without surgery, I would be ‘bedbound’ forever. I knew that I couldn’t let that happen. So I knew that I had no other choice but to go through with the surgery. Yet, I am not in the best condition to undergo surgery, as my organs are shutting down and my bloods are a mess and so is everything else.

Before the doctor took me into surgery, my head surgeon conducted many consultations with other doctors in the hospital and with my other doctors as well because they didn’t know what to do because they knew how desperately I needed the surgery but they also knew how frail and fragile I was too. All the doctors told my head surgeon that if he takes me into surgery, I would never make it out. They all said I would die on the table. But, I didn’t have a choice… after all I went through in my life…I was not going to now be ‘bedbound!’ Whatever was going to happen was going to happen.

The docs tried for 2 days to pump me up with enough fluids and nutrients to try to give me the best chance to survive the operation. But they stated that they only had a 48-hour window for something like this so we had a deadline. On Monday, I was operated.

11834741_10101636841333830_7655364481965637313_oDad and Scooby stayed in the hospital around the clock 24/7. I can’t thank them enough for all that they did. I couldn’t believe that they actually never left the hospital all the time that I was there. You can’t imagine the difference that made in me. Dad was there to constantly help me and Scooby did a wonderful job making me feel better. In fact, Scooby became the first dog to go into the OR and when I came out of the operating room, they even brought him into the recovery room for me. He never left my side. Everyone in the hospital got to know Scooby and came running all over the place to see him. He would be going outside and you would hear in the hallway… “There’s Scooby!” He became so popular that I was going to make him an Instagram page.

Scooby and dad also bonded a lot during this time. I never saw dad fall in love with a dog so much. Well after all, he did have to take care of him because I couldn’t. He had to feed him and take him out because I was not able to do so. Dad ended up teaching Scooby so many things when we were at the hospital because Scooby is such a fast learner. He would take Scooby on walks and come back to the room with news of something ‘new’ that Scooby has done like go up and down stairs.

11705813_10101637310478660_2372319220941174179_oDad also learned a lot. He learned how to use hand signals and how to get Scooby to listen to him. He always was in awe of how his trainer would get him to listen and me too, but he couldn’t. So during the time we were in the hospital, dad also learned how to communicate with Scooby using hand signals and everything. So that was one of dad’s favorite things to do. He loved getting Scooby to listen to him and get him to do stuff like tricks and everything.

Omg… wanna hear something hilarious? When one of the doctors came into the room, the doctor was talking using his hands and he was actually making the dog go crazy. Scooby knows hand signals and with the ways that the doc was waving his hands, he was giving different hand signals to Scooby and making him go crazy. It was so funny.

This was the worst surgery you can ever imagine. Due to my complexity of situation, the docs didn’t really want to do it under general anesthesia because they thought it was too risky. So they did it under epidural and therefore, I was kinda up for it. OMG… I wanted to die. When I told my doctors about how it was under ‘epidural,’ my doctors said that this is the worst kind of surgery to have.

I wanted to die. This surgery hurt so bad. By the end of the surgery, I couldn’t take it anymore. When they were closing me up and stapling me closed, I was begging them to get out of there. It was so entirely painful. They placed over 50 staples in me and I am cut from the waist to the knee.

11794522_10101634532380990_5359135636382356603_oI am now officially the bionic woman. I have a rod in my thigh, screws, plates, etc. It never ends. Do you remember the toys known as KNEX? That is what I look like now. The doctor said that when they were putting the screws into me that it was like drilling into butter. I am so sick and weak that he compared my bones to butter. So even though the doc said it can’t happen most likely, I am scared that the screws are going to pop out.

I feel so helpless now. As much as I try… I feel defeated. I desperately need help and unfortunately a lot of it is going to depend on funds and treatments that we can’t afford. So if there is anything that you can do to help me, I would really appreciate it. Now besides having my neurological illness to take care of because my autonomic dysfunction has severely worsened, I have to deal with learning to walk all over again and move. I feel like a little baby trying to walk all over again.

Luckily I have my dad to help me because he has been carrying me to my bedroom and helping me a ton because we desperately need help, yet it all costs money… money that we don’t have. So he has been doing as much as he can in the meantime.

11703584_10101636840909680_6292808522680495108_oI have already fallen two times and thankfully those 2 times I haven’t down any significant damage. I get so scared when I fall because I am so afraid that all the hard work that I accomplished already is going to disappear and that I am going to have to do this all again. I would never and could never do this again.

In addition to learning how to walk and heal, I am also getting severe pitted edema. My legs are so heavy and full of water that I can barely lift them. In fact, that is why one of the times I ended up falling. The fall really exacerbated my neurological illness in such a way that I need ketamine and help in the worst way possible so that it could hopefully slow down and reverse whatever damage occurred. Time is of the essence with that too because the longer you wait… the less chance of that happening.

In fact, the disease has worsened so much and caused so much edema and lack of circulation that my legs look like ‘elephant’ legs. The docs freaked out right away about it because not only was it sooooo swollen but of course it was soooo discolored and blue and cold. It really showed lack of circulation. Even though I knew deep down that it was nothing but the autonomic dysfunction and neurolofica disease acting up, I still was nervous too. They all thought maybe I was having a clot and therefore, the doctors sent me the other day for a Doppler study to rule out a clot in my veins because that is something that could kill me instantly. Luckily, it was not that.

But never a dull moment. I am always hitting brick walls. My surgeon wants me to take a regular aspirin, which is 325 mg twice a day because they are scared that I am going to develop a clot since I am not moving as much, but on the other extreme, my other doctors don’t want me to take that because they said that I am going to perforate my stomach and that is going to be the last thing that we need. They rather me just go on a baby aspirin, which is 81 mg. twice a day. It is a big difference and I don’t know which is the right thing to do. Never a dull moment.

So I guess that is it. If you can please help me in any shape or form… whether it is through encouragement or donations, I would really appreciate it. I am really fighting for my life harder than ever and I need all the help and support that I need. I also need donations more than ever because I desperately need treatments more than ever. Not only do I have to get to the Cleveland Clinic to get my colon removed like before, but I now have to overcome this too.

11888632_10101643210599770_2256033827091659344_oI have to have many different types of treatments to overcome this disaster now too. So I am in even more hot water than before. Not only do I need physical treatments such as ketamine and everything else, but I also now need someone with me to stay at the house because I am not able to do by myself. At least before when I was sick I could still stay somewhat by myself. But now… it is literally impossible because I can’t even get in and out of a chair or bed without help. I have a wheelchair, a walker, and even a hospital bed in our living room. Who would even think I would be using a commode? I am just falling apart and I need help to get my life back together. I also need PT now and it just never ends.11807550_10101635539782150_3312524574922990252_o

Well.. I guess that will be it. I hope you can understand where I am coming from and I hope you will find it in your heart to help me. If you can please donate or pass word on that donations are desperately needed, I would really appreciate it. Please spread my link and help me at www.gofundme.com/help4Fallon. Any questions, please feel free to email me at Femirsky@gmail.com.

Love,

Fallon

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July 25, 2015

11665503_10101604914156150_3042578884743741828_nIt just shows that you can “run but you can’t hide” from an illness. I know that I haven’t written in a very long time, but it wasn’t because things were all “peachy” or getting better. However, I was just running from my illness because I was tired of being sick. For once… I wanted to feel what it felt to be “normal” again!

Yet, I have realized especially with how I am feeling and especially after what happened the other day with my dad saving my life, I needed to write a blog to get everyone up-to-date on what is happening because things have obviously gone really downhill despite the fact that I have tried to “run” from this illness and conceal the fact that I am ill. I have been extremely ill and I honestly don’t know how much I am going to be able to write but I will do my best.

First off, I will let you know what prompted me to get off my butt and write this. Although I have had so many good things happen to me and I just wanted to be normal, I was reminded this week megaly that it is only physically that I “look” better and in reality… I need to get medical treatment and get to Ohio ASAP because time is definitely not on my side. I desperately need as much help as possible so that I can get the necessary funds so that I can get the life threatening treatment to save my life. My body is shutting down big time and I am at the point that my bloods are not even registering. I am living in DANGER big time!!

11401503_10101583249507280_8362096699535169975_nMy bloods have been dropping for a while, but they basically always ‘registered.’ Yet, I am at the point now that now aren’t more organs failing and more blood values dropping and being out of whack, but they aren’t even registering on the lab values. I desperately belong in the hospital, but unfortunately the only hospitals that can help me really are ones we cannot afford. So if you can please help in any way possible, I would really appreciate it.

Doctors have really never seen a patient like me… someone walking around with blood values off the chart. I am really scared because one of the values that are really low is my heart level. I am so scared my heart is going to give out. My whole entire body feels so weak… especially my heart. After all… you are only given one heart and once that goes…. You are done!! I am literally walking the slimmest line ever and this line is going to break. I am like a grenade that was detonated and we are almost at the point of detonation. Yet, I can’t have that happen. I haven’t lived my life yet. There is so much that I have to still do and so much that I want to live for. But the truth is that without help… that is all going to not even be a possibility.

My bloods are so bad that not only are my organs shutting down, but my heart is so prone to going into cardiac arrest and dying as well. So we really have to be careful in everything that we do. I can no longer eat or drink anything. Just the sight or smell of food or drinks makes me nauseous and I want to gag and vomit. I know I was barely able to eat before, but even those littlest things that I had before like the ice cream and ice-pops are impossible to have. It’s a shame too because those ice pops were one of the ways that I took my heart mediations that were so essential for me. I have been having trouble swallowing all my pills for a while, but now it is literally impossible to even get down one. I don’t know what is happening to me. To tell you the truth, the only thing that I actually enjoy eating is pickles and saucy cheese that you have on pizza. I don’t like the bread, but I like the sauce and cheese. I am just a complete mess. But I am so thirsty, and yet… I can’t find anything to appease my thirst without making me nauseous… not even ice pops. I am just one huge hot mess.

I was reminded of that this week because my dad literally had to save my life this week. I have been getting infusions of medications and potassium and other good stuff that I desperately need now when I get the ketamine weekly. Well… this week my dad was watching the machines that were on my monitoring my blood pressure and pulse and guess what? My pulse started going way up.   Even though the machines were beeping because of the emergency alarm, no one was coming and it took the quick thinking of my dad to get the doctors because of what was occurring. When the doctors came in my pulse was way over 120…. And this is coming from someone whose pulse is normally in the 40s remember? So this was extremely dangerous. So I was having some kind of reaction. The doctors had to take action immediately and even give me extra stuff in the IV to bring my numbers down. I never had a reaction like this and it is weird because nothing was really different except for the fact that I am ‘sicker.’ So I can’t thank my dad for what he did because I really could have stroked out or something else could have happened. Like I always said… my dad is my knight and shining armor and my “superman!” He is my dad, best friend, and hero.

I also had to go to see another doctor today because when I went to get my colon cleaned this week, the doctor did an endoscopy as well because I was complaining about a pill being stuck in it. Due to my severe gastroparesis, my esophagus is getting extremely bad and it is getting impossible to swallow things. Well, not only did they find the pill that I had stuck in my esophagus, but they found another marking on my vocal cords. So I had to get that checked out. Turns out that when I went to the throat doctor today, it was a “blood blister” which I have been getting a lot of. However, usually I get them just in my mouth. To have them now on my vocal cords and possibly down my esophagus…. It is not a good sign.

I desperately need help. I am deteriorating like crazy. My weight is plummeting and my teeth are even falling out. I am getting even embarrassed to smile because of what my teeth look like. My teeth have looked awful for awhile, but now that I am starting to actually “lose” my front teeth…. That is something I can’t tolerate. I have other teeth missing and spaces, but to have it now happening in the front (where it is extremely obvious)… I have to get something done. I can’t let this happen. It is bad enough to be sick.   But to look sick and look like an ‘ogre’… that is something else.

I have learned that sometimes you feel as you look. For example, the better you look… the better you feel. That is why I am so self-conscious on how I look. I make sure that everyday I wear makeup and fix myself up to the best way possible because I know that if you look good, you feel good. Plus, I don’t want people to know how sick I really am, so I try to conceal it with all this ‘fixing’ myself up. So now that I am having my weight even plummet more after I already look like an emaciated skeleton and then my teeth worsening the way that they are… it is also taking a huge toll on my psychological health as well. I just want to be ‘pretty’ and be normal. But with what is happening to me now… it is getting harder and impossible to be that way.

So I am begging… please help me get the treatments that I desperately need. I am supposed to leave for Ohio to meet with the surgeons to have that huge surgery to remove my GI system (especially my colon) on September 1st. I am also scheduled to go to Nebraska in September as well, as they want me there too. Those hospitals are the only two hospitals basically left and willing and able to care for me. So it is imperative that we get the funds for these trips so that we can go. Then when I have the surgery, which would be right after, I will be there for at least a month and we definitely need help in paying for that. So please help. Please help me find a way of paying for these trips, these treatments, and the current treatments to keep me alive until then. I know I sound like a broken record, but I am pleading for my life. I am desperate. Remember… any donations can be sent to www.gofundme.com/help4Fallon and any suggestions can be sent to Femirsky@gmail.com.

Since we didn’t have the funds for treatments and I really was starting to believe that there was no “hope” for getting better because despite my pleading the amount of donations we were receiving were not coming nearly enough or even remotely close to what we needed. I really appreciate all that has contributed and have helped because I definitely wouldn’t have lasted this long without you. But since I didn’t have enough, I did the most that I could with the treatments that I could do with the money that was donated and then I tried my own technique of pretending “not to be sick” in hopes to enjoy life and perhaps make that maybe a true reality. But it just showed me one thing in life… you can run but you can’t hide.

11700801_10101613894823820_7636675229780936552_oI really tried to be happy and normal for the past month or so. I was very fortunate for someone donating a wonderful dog to me. It was the best thing that has ever happened to me, as he became my BEST friend. He became the kid that I never will have. It was a great surprise to me and it was decided that this dog will be trained as a “service dog” for me to help me out. In this way, he not only can help me in the ways that I need, but he will be able to go with me everywhere including the hospitals. He really is one amazing pup.

This was one of the smartest moves I ever made. I have posted pictures of him on Facebook and I will post some at the end of this. If you have been on Facebook, I am sure that you have seen him because I have taken like a gazillion pictures of him. He is so photogenic and cute. Of course the pictures that I am in are of course photo shopped because I won’t put anything on Facebook without it being airbrushed and photo shopped because I don’t want to look ugly or sick or anything; I just want to look normal and I hate the way I look.

11402729_10101591612348080_2271950151865153770_nHis name is Scooby Doo and he is registered as a Service Dog even though he is still in training. He is a cockatoo and he is one amazing pup. He is currently 4 months old and I can’t tell you how much I love this little guy and how much joy he has brought into my life. He has been the kid I never have had and probably will never get to have. At least now it gave me something to smile about, post pictures of, and be happy about. My mom laughs because I treat him so good. She says that I treat him like a baby more than a dog. But I don’t care. He is mine and I am going to “baby” him all the way.

Scooby really is some dog. I have had some wonderful times and a great amount of happiness in the past month. He has perfect temperament and people who have met him even have said that they would “take him if I didn’t want him.” I was even offered money for him, but there is no amount of money that can take him away from me.  He is mine!! I have clothes for him, bows, a stroller, and even one of those things that you wear around your back and you can put him in so that you can have your hands free while you carry him on you. I even have a car seat for him. Thanks to everyone for the donating.

10986453_10101620925399490_8619025685723639319_nScooby really got attached to me. In fact, he even has ‘separation anxiety’ with me because he was taken from his mom too early. I one time looked up where he came from because the person who gave him to me originally got him from breeders obviously and they were in Missouri. When I looked them up…. I was appalled by the conditions that were there. It was like a puppy mill. They had so many citations against them that I am so glad that he is now here and living I a much better environment.

I can’t really write that much now but be on the lookout for some “Scooby” stories. All I know is that he really loves me and I can’t get away fro him. Leave him, he will literally scream at the top of the lungs until he sees me. He just can’t stay away.

Scooby loves the computer. In fact when he sees it, he even tries to type on it. He really is so funny and smart.

11234933_10101619583309050_7286576532265281275_oIn fact I didn’t realize how much Scooby really knew and understood until these past few days. When I became sicker than ever… I have been giving him commands and he has really been listening and obeying them. I am really shocked.

Well…gonna get going because not doing well. Thanks again for all your support. Just wanted to give a little update and let you know why I have bee so out of touch. Also was hoping and praying that you might be able to help me find a way to get the necessary funds so that I can get the life-saving treatments that I desperately need because time is extremely crucial. I am at the point where I can’t eat anything; my weight is plummeting faster than ever (I would hate to start going into the 50 range), etc.

Remember… any donations can be sent to www.gofundme.com/help4Fallon and any suggestions can be sent to Femirsky@gmail.com.

Thanks again for everything.

– Fallon

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June 1, 2015

11222210_10101553360734620_2345703925925083448_oHi! Before I begin my latest update, please let me apologize for not writing sooner. I have been not doing well, and unfortunately, I am so weak that I haven’t even had the energy to write an update! That being said… please understand if this ‘update’ is a little brief, vague, and possibly unfinished. I am just starting the blog and even though so much has happened and II would like to tell you everything with all the details and everything… I just don’t know if that will be possible. I am just hoping to be able to finish this update.

Since the last update that I posted, I never thought that it could possibly get worse from there. I have gotten so extremely weak and the illness robbing and taking everything from me as we speak because it is just spreading and taking over.

As of the current moment, we are just taking one moment at a time and one second at time. We never know where I will be from one day to the next, as I desperately need to be hospitalized because I am severely deteriorating. Among other things that are developing, my bloods are dropping, I cannot eat or drink, and have been feeling and smelling thing that I never have ever before.

11165098_10101536620272640_3879898923458870974_oThere has been such a BIG change in me that has led me down the path of disaster if something is not done fast. I desperately need to be in a hospital because I need my colon taken out, my blood raised, a transplant, etc. but unfortunately, there is no hospital willing to take me (especially in the are) that will be able to help me.

It is said, “hospitals can’t refuse a person.” Yet, let me say that statement is only somewhat true. When I go to a hospital, they tell me don’t come back or discharge me because they say, “there is nothing more that they can do and I need to go a place that can better suit my needs.” I am so complicated and fragile that not only do doctors and many hospitals not know how to deal with me, but also I guess I should be thanking my lucky stars for hospitals not “accepting” me because going to the wrong place can greatly hurt me. Going to a hospital or a doctor that is not knowledgeable and capable to caring for my fragile and complicated condition can actually make me worse and therefore, I definitely can’t afford for that to happen because once something happens, it isn’t always reversible. Plus… the wrong thing being done or even the wrong decision made can even kill me. So that is why it is so important to be at a place that can help me and be able to deal with my complicated health. That is why it is so important that I need your help because there are no hospitals in the local area that can do this and my only help is going across country to hospitals that can do this. The clock is ticking and I am like a time bomb waiting to go off.

Unfortunately I have deteriorated to the point that I need top specialists in various fields to care for me because I am so fragile. Very few doctors are even wiling to work on me because of how fragile I am, but yet, I definitely need help. You can’t imagine how many times I have called doctors and have been turned away because I am too “bad” for them and they said that I need a “better” doctor.

10941830_10101469922550410_1172399970812515807_nI have been fortunate to find 2 hospitals that have specialists that are willing to help me. It is basically my last shot. It has even gotten to the point that some doctors have even suggested “hospice” if I can’t afford the treatment that I need to get better because it is getting to the point that no one in the entire country is willing to work on me because of my fragile state. So that is something that I definitely DON’T want and I want to do everything to prevent that. Once hospice is called, I know it is all done from there. All my dreams of getting better and becoming a doctor and having a family and “living” are all going to be officially done. There is no way that I am going to let that happen.

So I am going to do whatever it takes to get the treatment that I desperately need before it is too late and I am hoping that you will help. If you can please help donate or help me to raise money by having any fundraisers, I would extremely appreciate it. I desperately need to get this treatment and I need to get it NOW! Time is extremely crucial. Even though I have been battling this illness for quite some time now, which is something that the doctors never thought I would do, I am not ready to throw the towel in now. I am a figurer and I am NOT going to give up. So please…. If there is something that you can do to help me get the treatments that I need so desperately and deserve… I would really appreciate it.

I need to get the funds so that I can get to NEBRASKA MEDICAL CENTER or UNIVERSITY OF MINNESOTA MEDICAL CENTER. These two hospitals are my last options and have the experience, knowledge, and capability of my illness to be able to take care of me. Yet, I need to be able to get there and unfortunately we won’t be able to do this without the help of others. I just came back from California and unfortunately the care that I would need because of the complicated state that I am in cannot be attained at that hospital. That is why I am being sent to these two other hospitals. After investigation, my doctor said that these places would be my best bets. So this is now what I am up against. I need to find the money for these hospitals because these are where the best doctors are and my only chances.

11206868_10101539604357510_6909620548668059541_oMy colon has been paralyzed for a while. It has been leaking toxins and everything into my blood stream and they have been going to my organs… essentially shutting them down. My colon is extremely ‘dead’ that nothing passes through and therefore everything just “sits and rots” in the colon. That is why I need to go every week for surgery to have my intestines cleaned out because not only can I not pass things through, but we also have to try to alleviate these toxins because they can easily perforate my intestines and I will go into sepsis. If that occurs, I will be up the creek and in further problems. So I go every week in the OR to have my colon cleaned. This is definitely not a life to live.

In addition, my colon is so diseased and has intussusceptions or twists. I don’t know if I should say that I am lucky or unlucky about this, but my colon is so huge and dilated (which of course it shouldn’t be) that I have been able to live with these twists and intussusceptions. Usually a twist in the colon or an intussusception would be a cause for emergency surgery, but since my intestines are so huge and dilated, I have been able to live like this to a point. My colon is so big and floppy that it takes over 5 doctors to navigate my colon because it has to be help and everything. In addition, just to get to the cecum, it will take over 2 hours, which is really a LONG time.

11078236_10101537818745890_8520432932121771099_oBut it has now gotten to the point where we think that my colon has become obstructed in such a way that I need surgery immediately. No longer can I live with these twists and intussusceptions. I can’t go to the bathroom and I am extremely nauseous. I am not hungry for anything and can’t even get the simplest thing down. Even my pills that I need to take in order to live are impossible to take and I can’t even take my medicated ice-pops, which should be so easily to take because they are basically “ices!” I couldn’t eat before and now even the little things that I could manage to get down… I can’t even get them down. You know it is bad when you can’t even get down ice-pops.

In addition, they also discovered that my esophagus has aperistaltic. We always knew I had swallowing problems and that my esophagus was affected with the Gastroparesis, but it has been officially confirmed that it is “aperistalstic.” They have also discovered that I have a hiatal hernia and to have this on top of the colon, I am basically a disaster. Now not only do I require an emergency colectomy but I need now surgery on my esophagus as well.

As stated before, I need to be in a hospital where I can get the emergency colectomy that I need and now surgery on my esophagus. I also need to have an intestinal transplant. There are very few hospitals in the United States that have intestinal transplants, as there are only about 6. Not only do I need to be at those hospitals because they have the transplants and surgeries that I require, but those are also the hospitals where you find the top-doctors who deal with problems that I have ad where they are used to dealing with patients like me because that is their job. Their job is to transplant patients when they get as sick as me…. So they are used the task and complicated nature that I pose to them. You know?
That is why I need to get to NEBRASKA MEDICAL CENTER in Omaha or to the UNIVERSITY MEDICAL CENTER. They are my last two options basically and have the surgeons capable of handling me because no longer am I strong enough for any transplant doctor or team to care for me. I need to be in a place where there are TOP-NOTCH specialists in various fields because my health is deteriorating to the point that I need al hands on deck. This disease has taken over my ENTIRE body that I need all different specialists in order to get well (heart, lung, neurology, GI, etc.).

So we are praying that we get to the hospital as soon as possible. If you can please help us by donating or spreading the word or even saying a simple prayer, we would greatly appreciate it. Donations can be sent to www.gofundme.com/help4Fallon and if you need to contact us with any questions or have any fundraising ideas, please feel free to do so at Femirsky@gmail.com.

Please help because I am literally watching myself die. I am experiencing things and smelling things that I never had before. I can barely get out of bed because I am so weak. To be honest, we have to do so much laundry too because I can’t control the mucous that continues to leak out, which forces me to have to wear “diapers/pull ups!” In a way thank goodness I am so small because I am able to fit into the kid diapers/pull-ups so that I am not stuck wearing those ugly depends that adults have to wear and would make me feel even more self conscious and embarrassed than I already do. I am so embarrassed by having say that I have to wear these because what person my age should have to worry about wearing diapers? It just isn’t fair. This disease is just taking everything.

11187373_10101537815746900_9177675661057062622_oI am also collapsing everywhere. Thank goodness that my dad is around because I can’t tell you enough how many times he has had to pick me up off the ground. I am losing weight and getting so weak that I just pass out. Even just trying to go to the bathroom is using too much energy and therefore I end up “passing out” when I try to go to the bathroom. I can’t tell you how many times I have fallen and banged my head already on the tiled floor. Things have definitely not been good.

Breathing has also been difficult. I am aspirating like crazy and it is at the point that the more I drink, the worse I aspirate. Yet, I am so thirsty and nothing quenches my thirst. I also am so nauseous as well and it even makes it harder in drinking anything.

My bloods are falling and the labs keep calling my doctors and telling them how I am in a “medical emergency!” I desperately need to be in the hospital because my heart can easily give out, but unfortunately, as I stated before I just can’t go to any hospital. So that is another reason why we need to get the funds ASAP so we can get me hospitalized because once the heart goes… that is it… and the disease is already affecting that too now.

I also get these really intense headaches that I can’t lift up my head. My eyes get extremely a lot of fullness in them and I have trouble seeing. We know the disease has affected my eyes already and that is why I have “prisms” in my glasses, but it is so annoying having this “fullness” feeling in my eyes and not being able to see. The doctors say that I should wear my glasses as much as possible because it would take some of the pressure off, but I only have like one pair and the cost of glasses is extremely expensive, as the lenses alone will cost me over $1000 because of the special prisms which is something that we can’t afford. Usually a person can live with one pair of glasses, but in my case… it is so hard because they keep bending out of proportion because I fall asleep on them. Then once they bend, I can’t really use them until the eye doctor fixes them, which leaves me nothing to use in the interim.

I’ve noticed that whenever the autonomic dysfunction acts up… I feel worse than every. That is when I especially can’t lift up my head, I can’t see out of my eyes, and I get so nauseous. I have gotten nauseous in the past, but nothing like this. I can’t even put into words how nauseous I am and what I feel.

It is at the point that all I want to do is “sleep!” But I know that is not the answer. I know that I have to push myself because even though it is much easier to “give in” and just sleep the day away, I can’t do that because it won’t be good. It will only weaken me further and I can’t allow that to happen. After all, if you give an inch to this illness… this illness takes a foot. I can’t afford for this disease to take anything else from me, as it stole so much already.

I would do anything to be normal again. I constantly dream of the day that I will regain my life and be “normal!” I look at other people and I get so ‘jealous’ because they can have friends, walk, eat, workout, go to school, go to a career, have a social life, etc. I am not going to lie… it really does hurt. I worked so hard in high school with aspirations to become a doctor. I thought I had my life figured out planned out. I really wanted to make a difference in the world and wanted to become a doctor with a family and everything. Yet, never did I think that I would be struck with something like this that would rob me of everything that I had.   It really is true when they say, “health is wealth!”

ImageNow I don’t even have anything to smile about because this disease has taken everything from me. I hate to even smile too because of the way I look. I look like an emaciated skeleton and my smile is something that scares me. This disease has caused damage to my jaw and teeth that I am so self-conscious to even smile. I need so much work on my mouth both because it is needed and cosmetic, but it is something that as can’t afford as well. But if someone can help me to “smile” again, I would really appreciate it because I even hate to look in the mirror because my smile looks absolutely hideous. To think… I was once a very happy and joyful person who smiled all the time. Now I hate to even to do that because I am afraid I am going to scare people away. I look like an ogre or some type of creature between how skinny I am (as I look emaciated) and how I change colors (due to my Autonomic Dysfunction) and then because of my smile.

I would do anything to be able to smile again. But in order to do that, I need a lot of work that we can’t afford. In addition, I first have to worry about the disease in my mouth too, which is something we can’t afford and is further ruining my smile. That is another reason why I need your help. My mouth and teeth are just falling out and deteriorating because of my illness that if something isn’t done soon, I won’t even have teeth or a jaw to eat with. This is something that I shouldn’t have to worry about at my age.

It is just getting worse and worse. To top everything off… it is basically at the point that when we do travel to the hospitals in Nebraska and Minnesota, I am basically getting too sick to fly commercial especially now with that huge possibility of the obstruction in the colon. Therefore, I need to take an Emergency plane to get there which will cost us a lot of money ($30,000) and we don’t know how on earth we are going to afford that. We tried to get the insurance company to pay for it, but unfortunately they are only helpful when you don’t need them.

This whole world is about money and I honestly can’t take it. I always wonder what it would be like if “money” didn’t exist. I know I probably wouldn’t be up the creek like I am now. I probably would have been long better by now. But unfortunately this whole entire world relies on it and if you aren’t fortunate to have it… you basically are out of luck in so many ways including getting the necessary help you need when you are sick and dying.

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An old picture before I got sick of me happy, healthy, smiling, and dancing with my dad!

It is so sad because I look at my dad for help and he wants to get me well so badly. He keeps telling me that I am going to get well, and he is “not going to let me die,” but we know that it is out of his hands. He is doing whatever he can to try to raise the money that we need and working so hard to pay the bills, but it just isn’t possible to do so. The treatments are too costly, the bills are too great and my dad working so hard is really scaring me because even though I know how badly he wants to get me well… he is no youngster and I don’t want to see him having a heart attack or dying in the process. He works himself around the clock and only gets 4 hours a sleep between working and taking care of me and even though my dad thinks he is “superman”… I would never forgive myself if anything ever happened to him. There is only so much a person can take and he is beyond that. He really needs to rest. Yet he keeps promising me how he is “not going to let me die!” Nothing hurts me more than looking into his eyes and seeing how hard he wants to help me, but his hands are tied.

So it is everyone who cares about me to make a difference and help me to get well because we can’t afford it by ourselves. Please help. I need you more than ever. Please help me by donating, spreading this link, or even praying for me. Remember that no donation is ever too small and all donations are extremely appreciated.

To keep myself as normal as possible, I have been trying to read and color. A book from my favorite author, Sophie Kinsella, is being released tomorrow (Tuesday). I can’t wait to get it because I love all her books. Maybe that will help bring some happiness into my life and pass the time.

Well… I am basically out of all my strength. I am ending the update here, but if I find anything further out, I will let you know. If you can please help me, I would really appreciate it too. Thanks for all your support and thanks for helping me and standing behind me. I wouldn’t have made it this far without out.

Thanks again.

Love,

Fallon

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May 7, 2015

11140257_10101534968198410_4391557016786629507_nHey-

Sorry that it has been awhile and I haven’t written, but things haven’t been going too well. Plus… a lot and I mean A LOT has been happening and I haven’t known where this roller coaster was going to stop. I didn’t want to write about things to only give you false information or to have to correct anything. So I thought I would let the smoke clear out and get all the facts straight before I went and said anything.

The smoke is still clearing and the dust is still settling, but I do have news to share and unfortunately, the news isn’t so ‘good!’ As you might have heard, I will hopefully be leaving Sunday for California. I know… you are probably wondering, “Whatever happened to Cleveland Clinic?” So I figured I would get this out into the open and answer this question right off the back.

The fact is that the surgeons at the Cleveland Clinic backed out and I have gotten way to sick and “fragile” to go there. Unlike other hospitals, the actual surgeon that is actually going to be doing the surgery on you doesn’t admit you. You need other doctors such as a “regular” med-team to be the admitting physicians. Therefore, after I waited so long to be admitted due to the facts that I had no money to have all these complicated surgeries and live down there for that amount of time, I deteriorated immensely. That being said… the admitting team refuses to admit me despite the fact that my head surgeon is still willing to do the surgeries on me. Yet, since the hospital doesn’t give the surgeons in the hospital technically “admitting” privileges… I am kind of out of luck because no one wants to take my case on.

Doctors think that I am way too fragile, complex, and complicated for them. Even though my transplant team and head anesthesiologist has assured them that they would be doing everything and just needed them to “admit” me and to do the regular daily stuff like the blood work and everything that a “normal” patient would receive on a day-to-day basis, they still refuse to do it because they feel I will need more care than that and they don’t want to be bothered. So despite all the pleading and begging, and even though my surgeon wants to pull the trigger because if I don’t do it now it will be hopeless, the I still need the admitting doctors and they don’t want to do it. So my surgeon’s hands are technically tied and I have no other choice but to not to have the surgery there. I would never have thought even in the first place that I wouldn’t be admitted under my surgeon. I thought that since I would have him as my head doc, I would be admitted under him… just like I have always done in New York, California, etc. I guess this is how they keep their hospital working on a sufficient basis and keep each working and focusing in their field. They don’t have to worry about doing anything else but what they are trained and ‘hired’ to do. You know? I can see where they are going with this thinking, but I am not quite sure if I agree with them.

So that still leaves me though with no doctor and it leaves me not receiving the life saving treatment that I desperately need. I don’t understand why this whole world has to depend on money. If it wasn’t for money, we would have been able to afford the surgeries that I needed at the Cleveland Clinic and I wouldn’t be up in this predicament. I wouldn’t have deteriorated in this way in the time we needed to try to get the money and as a result, the “admitting” team wouldn’t have chickened out. But… apparently this isn’t the world we live in and as a result, I am now forced to move on.

I can’t stop walking, but have to keep going. I don’t know where I am “walking,” but I know that I am still walking. The doctors in the meantime only gave me 6-8 weeks left because of the way my body and organs are functioning. I did notice a lot of different things that are occurring that I never experienced before, so to be honest… it is scaring me a lot. I am a very complicated individual and I do need a very complicated and radical procedure. It is very difficult to find a hospital and surgeon that is competent and able to do these surgeries and able to handle me as well.

But my team has pointed me in two directions to go into. They pointed me to a top surgeon in California called Zuri Murell and to the Mayo Clinic. They are both the only hospitals really capable of handling me. These doctors are very fine physicians and were possibilities we were thinking about going to see besides the Cleveland Clinic in the beginning, but what made us go to the Cleveland Clinic was that it was the ‘cheaper’ route. So I am scared now that if I couldn’t afford Cleveland, how am I on earth going to afford these other doctors. I know I am desperately running out of time by the way I am looking, feeling, and the way doctors have told me. I don’t know how I am going to do this especially when I have to find ways of coming up with even more funds since they will be costing more than the Cleveland Clinic. Whereas the insurance company did pay a part of what was happening at the Cleveland Clinic, we will be responsible for the total cost at the Mayo Clinic and if we go with Dr. Zuri Murell in California.

10425446_10101534121560080_3286790390520583223_n I don’t know how on earth this is going to happen. We will have to pay for everything from traveling arrangements, to doctor fees, to hospital fees, etc. I don’t even have “out-of-network” benefits, and therefore, I have nothing to take the burden off of us. But this is like the only and last place we can turn to. We are kind of out of luck after this and the clock is ticking down. I am like a grenade and I have been detonated. I only hope that I will receive the necessary donations/funds that I will need to be able to have these lifesaving surgeries and all hope is not lost. There is so much people in the world and if everyone would just donate even a $1…. I would be ok. I just need help and I need to find the kindness in everyone to help make that happen. I really appreciate and thank all the people that have helped me previously but this operation is going to be astronomical especially when everything is going to be out-of-pocket and I am going to have to live there for a while. It is especially going to be tough because dad will have to be with me therefore awhile and he won’t be able to work either. I have already seen what has happened if I have to “wait” because I don’t have the money and to be honest with you… I don’t have the time for that anymore.

I don’t have the time to postpone surgery anymore. My body and organs can’t take it anymore. I am in so much pain and my organs are shutting down. I can barely function and even have to wear diapers because my GI system isn’t working. I am losing weight, which is not a good sign especially when I am already in the 60s, and the doctors are so worried that I am going to rupture my intestines or go into sepsis, which would be a disaster and basically automatically kill me.

So I am just hoping and praying that I get enough funds and donations. If you can please be of any assistance, I would really appreciate it. I need the money to have the operations, as well as to stay down at the hospital and live there for many weeks without my dad working. I can’t afford to “wait” anymore. So please. I am begging. If there is anything you can do, suggest to me in order to raise money, spread the word, pray…. I would really appreciate it. Please help me. I have been robbed of life so much and I want to live so badly. I have so many dreams and so much I have not been able to do and want to do. I even want to become a doctor so that I can make a difference in the world. At least if something does happen to me, I hope that through these blogs I may be able to help others in learning about this illness since a lot is not known and I can show others not to give up no matter what. I want to show that no matter what happens, you need to keep walking… even if you don’t know where you are going.

Even though things are going downhill quicker than ever, I still try to look my best. I am seeing and experiencing stuff that I never experienced or thought I would ever in my life. I never thought I would wear diapers all the time and I would be bleeding the way I am. I go through more bedding and clothing than you can believe. Even if it is for like 20 minutes, I can be covered in blood if I am not careful. You never know what to expect. It is horrible. I am so hungry and so thirsty, and nothing quenches it… not even IV. I can’t even go to the bathroom. Yet, I am trying to look my best even though I have notice some physical signs that have told me otherwise. But I have discovered that life is hard enough and if you can make yourself look good and feel good about the person looking back at you… then that is half the battle.

As it stands right now, we are hopefully heading to California on Sunday to see Dr. Zuri Murell. He is from Los Angeles and also supposed to be one of the world’s leading surgeons. It is amazing how the top surgeons barely ever take insurances. I don’t understand how they can do it. I guess they get enough patients that you need them more than then need you. Dr. Murell has conducted numerous, high-profile research studies and remains at the forefront of innovative developments in colon and rectal surgical techniques. His extensive qualifications place him within an elite circle of the top colorectal surgeons in the United States. He is also supposed to have excellent bedside manner, which is definitely a huge asset especially with me because everything with me isn’t straightforward and I need someone with a lot of patients and can remain calm and keep my dad calm and me as well. Dr. Murrell, a Beverly Hills proctologist, recently became Director of the Colorectal Cancer Center at Cedars-Sinai, the team that consistently pioneers colorectal cancer treatments. He is a member of the American Board of Colon and Rectal Surgery, the American Board of Surgery and the American Medical Association.

As of right now we don’t know exactly what to expect. At the very least, we know a complete colectomy (removal of the colon is definitely necessary). The colon is completed diseased and it is so diseased that it takes literally like over 5 people to navigate it. Just to get to the cecum, it takes over an hour. I have so many twists in the colon called “intussusceptions,” which would usually be an emergency, but because my colon is so distended, I have been able to live with it. The doctors can’t wait for me to take it out so that they can physically see it and measure it and everything else they need to do with it.

Even though my entire GI is completely basically dead, they are hoping that they might be able to get me through a colectomy and hold off the transplant for a while even though a multivisceral transplant is definitely a possible (small and large intestine, stomach, pancreas, liver). They know that the stomach and colon is gone and they are hoping that they can use the small intestine as the sole organ from the esophagus to the rectum to bypass the stomach. Hopefully this might alleviate the need for the transplant or be even able to delay having the transplant. But we won’t know until we see physically what the small intestines look like when they get inside. I just hope I don’t wake up with a bag. I guess I will know more of my chances of having a bag when I meet with Dr. Murell this weekend.

So I am leaving Sunday and I am kind of bittersweet about it. I am glad that they are fitting me in so quickly, but kind of sad because it is also Mother’s day and I can’t be here with my mom. Even though we really don’t have anything planned, it is still a “special” day that I wish I could have spent with her. After all, I only have one moms and she certainly is the absolute best. I love her to pieces even though it kills me that she can’t travel with me across the country to see doctors or go for treatments, but someone has to stay back and watch the business, house, business, etc. Someone has to try to make sure we come home to “something!” I just love her to pieces. But… hopefully it will all pay off by going to LA on Sunday. I will definitely keep you updated.

In the meantime, I am continuing the same regimen that I have been doing before and hoping to keep going as long as possible. I have ketamine treatments on Wednesdays and then surgeries on Fridays to clean out my intestines because nothing moves through and this is the only way of “cleaning out” my intestines. We are trying to buy enough time as needed, but I am definitely getting weaker by the day. We don’t even have a hospital around here to attend if something happens and if we need to go to the hospital because so many doctors and hospitals have told us “not to show up because they can’t help us.” So it is more important than ever to get to California or wherever to get this surgery because I am going to die without it.

10995409_10101534123850490_5027407227827653739_nSo that is the big and upcoming plans and what is doing. I will write again soon, but as of now… I just going to go and rest because I am so not feeling well. I just hope that I get the necessary funds to have this surgery soon because I can’t afford to wait any longer. Not only can’t my body physically afford to do it, but also I can’t do it emotionally either. Plus… the longer we wait, the weaker and more fragile I am getting and the more scared doctors are getting. So please… please help me. If you can, please donate to my website at www.gofundme.com/help4fallon or email me at Femirsky@gmail.com. I will take anything… a prayer, a donation (no matter how small), a suggestive fundraiser, words of encouragement, even someone to even just talk to because you really find out how ‘small’ your life is when you get really sick because you can’t really do anything anymore. Despite the fact that I keep “walking”… I am definitely not the same person I once was no matter how hard I try. I again want to thank everyone who has tried to help me in the past. I def wouldn’t have been here today and made it this far without you.

So hopefully I will be writing to you next either right before I leave for Cali or when I get there. I have been trying to read, but it hasn’t been so successful. I have been trying to read some books of Joan Rivers because she really is one of my favorite people. She also has such a sense of humor that I am trying to use to get through this.

So… until next time!

– Fallon

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April 17, 2015

10941830_10101469922550410_1172399970812515807_nHi! I just wanted to write a brief blog to thank all my supporters and all the people who have contributed to helping me make it this far. I definitely couldn’t have made it this far without you. Whether it was through prayers, spreading word of my website, donations, messages of kind worlds, etc., I really want to thank you.  I can’t tell you enough how much I appreciate it.  I am really going downhill fast, but whenever I saw a message that someone donated or someone sent me a message or someone shared my site/link/message, it really put a huge smile on my face!!

I am so sorry that I haven’t written sooner and thanked you for all your thoughtfulness and generosity, but I have been really sick lately… Sicker than usual. Yet, as I am getting to leave for the Cleveland Clinic and embark on one of the biggest adventures ever that I have no idea what is going to happen, I really wanted to thank you all and tell you all how much I appreciate everything that you have done and continue for me. After all, I need all the support and encouragement that I can receive.

You are such a wonderful and generous person, and I only wish that more people can be like you.  If only there were more of you… I perhaps could definitely get the treatment that I need to save my life and I wouldn’t have to worry about this.   You are really an angel to me and I really am so thankful and appreciative to all that you have done and continue to do for me.

I can’t wait for the day to be able to announce on this site that “I AM WELL!”  When that day should happen… please let it be known that it was because of you and your thoughtful donations and support that it was able to happen.  You made it happen and it would definitely not would have been possible without you.  I really don’t know how I can ever repay you.  There is nothing more precious than your health, and people don’t realize it until it is too late that this is the truth.  People are not appreciative of what they have until they don’t have it at all.  It is the people that are like you that shine through in life because you CARE about others.  You don’t take things for granted and you help others when in need.  Health is wealth and when you have it… you definitely have everything.

I will be leaving shortly for Cleveland and I am so scared.  I have never been more scared for something in my life.  I am in more pain than ever, I am swelling up with pitted edema, my bloods are failing, I can’t clot, and they think I am in heart failure, and more.  I am not going to lie and say I am not afraid for this huge adventure that I am about to embark on.  But I also know that this is the only thing to do because I am rapidly deteriorating and I am at the point where it is “do or die,” as I am a grenade that has been detonated.  I just hope I get to the hospital in enough time and be able to get the help that I need to save my life.  But knowing that I have the support of people especially like you makes such a huge difference.  I would never have made it this far and will continue to make it without you.

I will need so many surgeries in the next upcoming weeks, and who knows what is in store for me.  I just hope that they all can come about because we are so short on funds and of course everything costs money.  Even though we might be able to go to the Cleveland Clinic to get SOME treatment, I really need ALL the treatment if I am going to save my life.  But unfortunately, we cannot afford it on our own.  So if you have any way of spreading the word of my website (www.gofundme.com/help4Fallon), I would extremely appreciate it because I really don’t have time on my side. I was an active, healthy teenager, until, without any warning, my life as I knew it was ripped away from me by a rare, painful neurological disorder that has no cure. The doctors say that I have only a few weeks left to live… As the doctors have already told me… “If we don’t turn the corner now and do these operations NOW… I am NOT going to make it at all!”  But I have a different plan, as I am going to make it through this with the help of others and reach my dreams and live the life that I was robbed of. I am going to become that “doctor” that I always dreamed that I wanted to be.

I am going into the hospital as a person and hopefully going to come out of the hospital well, but missing a few things.  I need heart surgeries, calcifications taken out of my coronary arteries, pacemaker placed (which can’t be done like a normal patient because mine has to under the muscle and bone because of how thin and sick I am.  It can easily get infected if it is placed like a normal one), bone grafting, jaw surgery, colon removed, multi visceral transplant, etc.  We won’t know how urgently the multi visceral transplant (small and large intestines, pancreas, liver, and spleen) will take place until they take the colon out because I am so sick and my GI track is diseased and basically “gone” as well that they really don’t know what the next step is going to be until they remove the colon.  Only then will they know because it all depends what the small intestines appear to look like because they know the colon is too far-gone to be saved, but there is a possibility of maybe saving the small intestines.  If the small intestines can be salvageable, they will use it as basically the only organ in my abdomen for the GI track.  The transplant wouldn’t be as urgently needed if this were the case. However, it would mean that they would bypass the stomach and use the small intestine basically to connect my esophagus to my rectum.  I guess I can be thankful that even though the small intestine is considered “small,” it is still large (long) enough to do all this.  After all, it is the small intestine that is the most important in the digestion process because it absorbs the nutrients.  Even though the other organs play essential roles in the digestion process and they are needed, you can live without them.  But the small intestines are too essential to live without.  If they get inside to remove the colon and the small intestine doesn’t look good, it will signify that I will need the transplant urgently.  So we will see what happens.  The colon removal surgery is scheduled for May 11th, but there will be other surgeries to deal with prior, so I really will have my hands full from DAY 1.  We are also hoping to have more funds donated by then because as I stated before…I will need many more surgeries prior to that date that we already can’t afford.

No one knows what the outcome will be or anything until they go in for the huge colon removal. I have so many other health problems so these surgeries are really going to be even more dangerous and risky for me than for the traditional person.  That is why I am also thankful that  I have your support behind me.  They are going to have to be extremely careful with me because they have to first worry about setting off one of my other diseases and making those illnesses worse as well in the process, as well as keeping me comfortable because these other diseases really complicate things by making me extremely hypersensitive and everything intensified and 100 times magnified and worse.  I suffer not only from a failed GI tract, but also from RSD (which is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System that is known as the most painful and debilitating illness in the world to exist.  I am extremely hypersensitive, feel like I have gasoline and spasms all the time, constant burning pain.  RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis).  I also have severe autonomic dysfunction and severe Gastroparesis, my entire GI tract is affected and is basically ‘dead.’  My colon is especially diseased and needs to come out.  Nothing passes through and as a result, I am getting toxicities leaking into my bloodstream and they are intoxicating and shutting down my organs as well.  So I really need to have this colon taken out as fast as possible. This is 24/7 and I never get a break.

Since my GI tract is totally tract dead among my other health problems, it is really going to be a huge problem taking out that colon.   I am just scared that I am going to end up with a “bag” especially since after you are put out…. that really is it!  You don’ really have a ‘say’ in the matter after you are out and the cutting begins.  It is weird to think that I will be losing some organs… organs that I have had since time of conception.  It also freaks me out that once the cutting begins, there is no going back.  So I can’t keep thinking that maybe this is a mistake even though I know deep down that this is not and how immediate and essential I need this to be done ASAP.

The only comfort that I get is at least one of my head doctors tell me that my head transplant doctor is “not a bag guy!” So hopefully this doctor is right, everything will go as planned, and I won’t have to worry about the “bag!” I do know that when I do wake up from that particular surgery, the first thing that I am going to do is look for that bag and feel for it. If I do find one… they better get psych immediately because I think I am going to freak out. No wonder they are going to keep me in a coma for a couple of days afterwards. It is not just to let me “heal and recover” but it is also to help me deal ‘soughta’ with this just in case it goes wrong. The doctors did say, “If it did come down to it and I needed a ‘bag,’ it would be only temporary and I shouldn’t freak out.” However, I don’t count on anything being temporary because it isn’t like we can go back anyway. Once those intestines are out, there is no putting them back. In addition, one I get that bag, there is no guarantee that it will be only a ‘temporary bag’ and that I will be able to be reconnected in about 6-8 weeks especially with my history. With my history… it is like MARSHALL’S LAW. Whatever can happen will happen!!

I am so tired of being sick and I really can’t do this anymore. I don’t want any of this ‘wait and see’ attitude anymore. I told the doctors don’t hesitate to remove anything. I told them only think carefully and really think about things when you have to ‘add’ stuff to me such as a bag. There are two things that I am deathly afraid of and I don’t want… a bag and a tracheotomy. I know that if stuff gets hairy and they ask my dad what to do because I will be ‘under surgery’, my dad will do anything and everything to get me well. You know Walt Disney and how he is supposedly ‘frozen’ and waiting for a cure to come around? Well… my dad wants me to be the “2nd Walt Disney.” He really wants to freeze me as well because until a cure comes around because he doesn’t want me to die. I just can’t hang on anymore and I am at the point that I want them to do everything and anything and I can’t wait around for any of this stuff anymore. It is just getting to be too much! Ether fix me or just let me go already. I can’t take the physical pain or the emotional pain. It is too hard already. It isn’t fair to me already. Don’t get me wrong, I am not giving up… I just want to get well so badly that I don’t want to ‘wait’ anymore for anything because the longer that we wait because we hope that I get stronger for the next step, I only end up getting worse and therefore, the doctors end up doing nothing because I am weaker than where they feel comfortable doing anything.

I am just getting scared… scared more and more as the time ticks down until the time comes when they do the surgery.  Unfortunately even though I will be leaving for the Cleveland Clinic in a day, I still have time to be ‘scared’ because the surgery for the colon isn’t until May 11th.  In the meantime, I will be undergoing other risky, intensive, and dangerous surgeries and therefore, I will have my hands full for the next couple of weeks.  I know that all the surgeries and procedures will be long and dangerous, but the surgery for the removal of the colon will be at least 10-12 hours especially depending if they bypass the stomach and have make use of the small intestine.

I am not going to continue to bore you, but I just want to say how thankful I am that you supporting me and wishing me well.  I only hope that this all works out because we can’t even afford the “little” things anymore like even my  day-to-day current treatment.  For example, we can’t even afford my meds anymore without help… especially when you take more medication than a horse.  I take everything from ketamine to methadone to dilaudid to morphine to klonopin to more.  If I was better, I wouldn’t have to worry about all these expensive and costly treatments, all these expensive meds, or where and when I will get this money from to pay for it.  I was never one to cry and plead for money before I got sick and I can’t wait for the day that I can be independent again and not have to rely on others in order to receive the lifesaving treatment that I desperately need.

Well I guess this is it. The next blog will be from hopefully Cleveland Clinic. I will try to keep you as up-to-date as much as possible, but please be understanding because I will be undergoing multiple surgeries and in intensive care a lot. I will be placed in many comas and on very high doses of medication and therefore, there will be times I will be unconscious and unable to write.

My dad is already freaking out in how he is going to be spending so much time in the hospital. One of my head doctors promised me that he will keep him busy as much as possible… like even take him driving in his Porsche to get incredible burgers because that is the only time he is permitted to have burgers. So… since he is going to be in the hospital and ‘bored’ so much… I am going to try to teach him as well to write some blogs so that he can keep you up-to-date as well when I can’t write for myself. I am also going to try to do some “video blogs”, but I don’t know how that will go because I don’t know how much I will be up to ‘typing!’

Well I guess this is it. There is so much still to do before we leave. We have so much packing to do. We are leaving Sunday morning and checking into the hospital probably Sunday evening. One of my head doctors is on vacation and will even be going away and first coming back to the area earlier that day. He did say though that he will come into the hospital that night when I call him to say that I am “checked in” so that we can further talk and so that he can start an IV line and I can receive some hardcore meds. I am especially going to need these meds because not only am I going to be in my regular pain that I can’t usually take, but I will be even worse because it will also be my big traveling day, which makes everything even worse in general. Traveling really takes a huge toll on me over all, so I will be in even worse condition than usual too. Then to put the icing on the cake, I have surgery for the my heart and to put the ports in first thing Monday morning, so I will be freaking out over that as well. So you can imagine how much pain and worries I will be having during this time. I am just so thankful that I have such a great team of doctors because no other team of doctors will go beyond what they are doing already. Not only are they doing everything to make me as comfortable as possible, but they are even coming in on their ‘vacation days’ to make sure things are done as comfortably as possible for me. He said, “once I am nice and comfy, he will leave and I will l see him first thing in the morning for surgery.” Who could ask for a better doctor?

I know I have the top team in the hospital and even the world working on me because even the best surgeons in their fields have turned me away and placed me in the hands of Dr. Kareem and the transplant team of the Cleveland Clinic. For them to do this and say this is a “Kareem” case… it shows how difficult I am already because they only get the really difficult or “hot potato” cases that no one else wants to take on. This small knit of surgeons (like 10 of them) are the best of the best because Cleveland doesn’t just take anyone! My anesthesiologist even said to me that there is no one better than these guys and how these surgeons are STELLAR!! So I am only hoping and wishing for the best.

There is so much packing to be done and I have to still sought all the medications. That is something that is going to be so time consuming because of how much meds I take and my dad takes as well. Even though my dad doesn’t take nearly as much meds as I do, it still will take time because I have to set each dose of medication up and label it with who’s medication it is and the time of day because my dad has no clue how to even set up medication. I am like the ‘nurse’ in my family because I set up everyone’s meds at home. So I bought little pill bags to put the pills inside because even though we usually use vials, we are going to need to many vials this time because of the length of time we will be away and therefore, I thought it would be easier if we just used little pill bags. So I will be busy for a couple of hours setting that all up.

I am also preparing just in case something should happen. I am making my mom a book of how to do everything. It is really funny because I usually do everything that I can at home. So I want to make sure that everything is covered.

I also want to add some stuff to my iPad in terms of movies, books, apps, etc. so to make sure that I will have some stuff to do in the hospital. If you have any suggestions, please let me know. Also…I would love to hear from you while I am in the hospital, so if you ever want to contact me, please email me at Femirsky@gmail.com and I will email you back.

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Love always,

Fallon

Well… thank you again for all you generosity and support.  I will never forget you.  Please continue to follow my story and please continue to pray for me because I am going to need all the prayers and support that I can get in order to overcome this.  I can’t tell you enough how much of an “angel” you are to me and how thankful I am.  Please always remember how special of a person you are.

Love always,

Fallon

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