Hi! 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.
There 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.
I 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.
My 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.
But 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.
I 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!”
Now 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.
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.