Happy New Year everyone! Just wanted to say HI and let you know all that has been happening because like usual my life is like a Soap Opera because there is NEVER a dull moment. I really thought that 2016 was going to be my year, but apparently this year has been nothing but headaches, disappointments, and downfalls. I have been trying harder than ever to get better, but the more I try… the harder I am falling.
I am supposed to be in Nebraska as we speak right now. But unfortunately, this winter blizzard that crippled the East coast has also canceled all flights as well and therefore, we of course couldn’t get to Nebraska. In a way it was kind of good that Mother Nature was in a fury because it helped take away my ‘fury.’ The reason I say this is because if the blizzard didn’t come, we weren’t probably going to be able to go to Nebraska anyway because there just wasn’t enough money to go. As much as we tried to raise money and save as much money as possible, it just was not nearly enough to make this trip. I really appreciate the few donations that I did receive, and I can’t thank the people who did donate enough. These people will forever be in my heart because I know how much they wanted me to make this trip to Nebraska so that I could get the lifesaving treatment to save my life. However, between the medical expenses that I have day-to-day at home for medications, doctors, procedures, treatments, etc. there just wasn’t any money to use for the trip. We can’t even afford those day-to-day amenities to keep me alive. So those donations not only helped in getting me the day-to-day care that I needed to stay alive, but we are also going to be hopefully going back to Nebraska in February and will use the money on that trip as well.
So I am kinda glad in a way that the trip was canceled and it was not because “I” canceled the trip. At least the power was taken away from me so I didn’t have to feel too horrible in feeling that the reason that I wasn’t going was because we couldn’t afford it. It is such a horrible feeling to know that there is something out there that can literally save your life and yet, you are unable to get it because you can’t afford it. It is like someone is just pulling the carpet out from underneath you. It really is the worst feeling imaginable. I don’t want to die and yet, I can’t afford the treatment that I need to save my life. I am literally watching myself die. It isn’t fair. It isn’t fair to my parents or family. What did I do to deserve this? The harder I try to get better and stronger, it seems that I am falling harder and faster. I try to do the most I can because I know if I give in to this illness even a ‘inch,’ it will take that inch and even more than that. I can’t let it take hold of me.
But we are now scheduled to go back to Nebraska on February 21st, and I am hoping that NOTHING will stand in the way of that trip. I hope we will have no more blizzards or emergencies. I am also hoping we will definitely be able to afford this trip now because it will give us a few more weeks to raise the much-needed money. So if you have any ideas of how to raise money or can spread the word, I would really appreciate it because I really MUST get to Nebraska then. You can always email me at Femirsky@gmail.com with any comments or questions. Please spread my website at www.gofundme.com/help4Fallon so that others can donate because even one dollar is one less dollar that we have to come up with.
I just now really have to worry about keeping myself alive until February 21st, which is getting to be harder than ever. I am really not doing well at all and I honestly don’t know how much more my body can take. I am literally holding on by a string. We knew that my organs were failing me and shutting down, but now my heart is doing especially bad and I need heart surgery and possibly a heart transplant. Gosh… I basically need a whole new body already. I need a new GI system (stomach, small and large intestines, liver, pancreas) and that is why we are heading to Nebraska, and now my heart is really doing poorly. In fact, my heart is doing so badly that they are worried that I am going to go into heart failure anytime.
I have been having so many symptoms and things are just getting worse and worse. To make matters worse, the health insurance company is also being totally horrendous and not cooperative at all. I can literally drop dead at any moment and yet, they are giving us such a hard time with authorizing tests. Even when a report from one of the tests that I went for specifically states that another type of test is warranted, the health insurance company is still refusing to authorize it. In fact, even when the health insurance states pre-requisites that I must undergo prior to going for the test that I need (such as a different test prior even though we definitely don’t need it), the health insurance company will still not authorize the needed test after we do what they said. I can’t understand it because we did the test that they required first and then they go back on their word. They then tell the doctor to wait another 45 days before applying again for authorization… like I have that time?? I can’t stand it.
I am really battling against the clock. So many things are happening and to be honest… I am freaking myself out. I am usually a strong person and I don’t let things get to me because I am ‘used’ to it. Plus, with everything that I have gone through, it really can’t get much worse in ‘scariness.’ You know? But to say that I am ‘scared!’ It really means something. In fact, it has gotten so bad lately that I sometimes just go to bed just praying that I won’t open my eyes in the morning. My body is sooooo tired and tired of fighting. I honestly don’t know how much longer I can take and how much longer I can go on. I keep trying to push onward and such… but it is getting impossible to gather the strength to do that. Thankfully I have my supporters who give me the strength to do that though because without them, I definitely wouldn’t even be able to open up my eyes in the morning. I can’t even tell you how hard even that simple little task is to do. My body is just so worn out.
That is why I am so desperate for help and donations. I don’t know honestly how much time I have and how much longer my body can hold on. It is basically at the point that if I am not helped soon, it is definitely going to be too late. Time right now is way to valuable. It is basically at the point that every day and every minute counts. So please… please help me get the donations that I need so that I can get the lifesaving treatment that I desperately need. Not only do I need the day-to-day treatments (i.e. meds, appts, procedures, etc.), but I also need the procedures in Nebraska (removal of the colon and transplants) and ketamine coma in Mexico (which will ultimately reverse this entire disease).
I look at myself in the mirror and I don’t recognize myself. People say I ‘look better’, but little do they know it is because of my illness causing all the fluids to build up in me and become swollen. I have gotten edema everywhere. My shoes don’t even fit on my feet anymore. I have gained like 15 lbs. in fluid. It is horrible. I am so swollen that you can make fingerprints in my body everywhere and my legs look like tree trunks. I even have blisters and sores opening up on my skin along with the skin being so shiny because the skin is overstretched from the fluids. It is so weird. The doctors are even not just afraid of the edema, but of the sores too now because they can easily become infected now too, which will be yet another problem. Never a dull moment.
The doctors have been massaging my legs and wrapping them in bandages to try to keep the swelling away, but even though the wrapping does help to a point, the swelling comes back to an unbelievable amount wherever the bandage ends. The edema swelling is everywhere in my body… especially in both legs.
The edema is so bad that I hate drinking. Even when I wake up and before I drink, I am completely swollen. However, as the day goes on and on… the swelling just gets worse and worse until I look like I am 9 months pregnant and like the Good Year Blimp. The doctors are so worried that I am going to go into congestive heart failure or something because of all the fluid.
I was so desperate to have this fluid to come out of me because I am so uncomfortable and in pain that even though I knew that I couldn’t take a diuretic without being prescribed one by a doc, I went to get a tea that was supposed to do the trick. After doing research, I found that there was a tea called DANDELION ROOT that was used as a diuretic. So I did go out and bought it. However, I couldn’t even get one sip down. It was absolutely horrendous. So this plan was not going to work.
The doctors ruled out that I don’t have a clot in my body causing my legs to swell. In a way that would have been way too easy. At least we would have had an answer. But, I did have a DOPPLER and it was ruled out that I didn’t have a thrombus in both sides even though they couldn’t augment the left side.
The doctors have no idea why I am having all this fluid build-up. When I have my intestines cleaned out every week in the OR because they are totally dead and that is basically the only way they can be ‘emptied,’ the doctors see all the fluid in my colon and intestines. They see how loaded the organs are and in fact they are so overloaded that as much as they try to eliminate some of it, there is just way too much to do so. They have no idea why my fluids are just remaining in the GI system and not being absorbed where they are supposed to go. They are thinking it has to do with the GI system being ‘dead’ and that is even more reason why I have to get to Nebraska ASAP because I need to have my colon removed and have the transplant.
The doctors know that the fluid has to come out of me though because not only am I very uncomfortable, it is detrimental to my health to even have all this fluid in me. So all the doctors agreed that I needed to be put on a diuretic, but they were all so scared to do so because of my heart and blood pressure. I have a bad heart especially with the electrolytes, and I also have very low blood pressure (70/50). The doctors were all especially weary about giving me the diuretic because diuretics have the potential to drop your blood pressure and also depleting your electrolytes. With me that could mean death because my blood pressure is already so low and my electrolytes are all very low as it is. So as much as they all said I needed one, they were all handing me to each other because no one wanted to take the actual responsibility of prescribing it because of my complicated health.
Finally, they sent me to a kidney/renal surgeon to see what was going on and why I was filling up with fluid so much. This doctor did put me on a diuretic, but guess what? This diuretic didn’t work. Now they don’t know why it isn’t working especially after even raising the dose. For someone with my size, it should have worked right from the beginning. When we raised it and it still didn’t work… it put up red flags all over the place. After looking at my blood work too, I had an elevated BUN, which showed I was dehydrated, which didn’t make sense either because of all the fluids they see in my body. So they sent me for more tests of course.
I went for an emergency CT scan. Luckily for all these tests lately (whether it be the CT scan, Doppler, etc.) I have been put to sleep. They don’t want me awake because I can’t sit still, and I also usually can’t tolerate the test at all. I couldn’t tolerate the gel and the probe during the touching my skin and the pressure that was put on me during the Doppler, and I can’t tolerate the contrast that is given during the CT and MRI scans because all this stuff sets off the autonomic dysfunction. So at least when I am sleeping during these tests and they do what they need to do… we hopefully are not setting off the autonomic dysfunction. Nothing is worse than when the autonomic dysfunction is set off. I can’t stand it. I always tell the doctors “do whatever you want, but don’t do ANYTHING that will set off the autonomic dysfunction.
I am so nervous about why I can’t go to the bathroom because I was always told that the dysautonomia might get worse to the point that I might have to catheterize myself in order to go to the bathroom. If I ever had to do that to go the bathroom, I don’t think I could handle it.
Well from all these scans we did find out some things we didn’t know. I of course have to go for more tests because we found so many new things out like we found out there is now a mass on my liver and nodules in my lung. I have always been having problems breathing, and it felt like I had something in my lungs like water, but now with this scan it was officially confirmed that there was stuff seen in it. In fact, when I breathe or cough, you can even hear me gurgling at times. The mass on my liver is also significant because it is about ½ an inch big.
However, what was most startling and not expecting to find was that there is something wrong with my aorta. I have aortic vascular calcifications. This is a condition in which calcium deposits form on the aortic valve in the heart. These deposits can cause narrowing at the opening of the aortic valve. This narrowing can become severe enough to reduce blood flow through the aortic valve, a condition called aortic valve stenosis. Old people usually get this and can lead to heart failure. So now the doctors are talking about replacement of the aortic valve. The doctors also said that having these calcifications in the aorta probably means I have atherosclerosis in the arteries of my heart and brain, which increases my risk for heart attack and stroke. Never a dull moment. So now we have to look into this now too.
But when I went for the CT scan, it further confirmed that my GI system was gone because it showed that I had severely distended loops of small bowel that contained fluid. Like we didn’t already know that. This was bad news though because we knew that the large intestine was completely dead, but we didn’t think that the small intestine was as bad as it was. We thought perhaps it might be able to be saved, but at this point, it is highly unlikely.
In addition, I am scheduled for minor surgery in 2 weeks. Of course with me, there is nothing that is considered “minor” surgery. But believe me… this is no biggie. My earlobe split in half and they have to repair it because it is getting infected. It was supposed to be repaired over the summer, but unfortunately there was a change of plans because I ended up breaking my hip/pelvis/femur. So of course that was put on the back burner to repair my ear. I also thought that maybe it would heal on its own. I guess that was wishful thinking because about 2-3 weeks ago the ear literally completely ripped in half. So now I have no other choice but to repair it. I just hope that it doesn’t cause any other problems.
So that is everything in a nutshell. Guess I just now have to hang on and see what is going to happen. I have been having really high fevers, which is really not common for me. So we definitely know I have an infection somewhere, but we just don’t know where. I just hope and pray that I make it to Nebraska in February and we will have the money to go. I need this trip and trip to Mexico more than anything in the world.
This was some snowstorm. They said it was the second to the worst snowstorm ever, as we missed it by a tenth of an inch. But to be honest, it didn’t really seem as bad as it was. This was Scooby’s first snowstorm. He absolutely loved it. We couldn’t get him into the house. He kept running in and out and jumping through the snow. I never saw such a happy dog.
Speaking of Scooby… He turned 10 months this month. I can’t believe how fast time is flying. Gosh… If I didn’t have him, I would certainly be at a loss. He is like my best friend. Scooby and Missy are my life!!! He loves to go to doctors with me and sits on the doctor’s beds with me. Even when I come back and fall asleep at my dad’s office after a procedure, he babysits me. It is so funny. It is supposed to be me taking care of him, but he watches me until he falls asleep with me. LOL
I also had a very special visitor this past week. My 3rd grade teacher visited me and she not only gave a great visit because I loved seeing her, but she is a phenomenal cook. I always told her how I am in awe of her cooking because she is always making these delicious snacks, meals, desserts, etc. I told her that when I get better, she is definitely making me a great big cake or something. So you know what? She not only came, but she surprised me and brought over her cupcake maker. She brought over cupcakes and then we decorated them. I had such an amazing time. When she opened up her icing kit (which looked exactly like a huge sewing kit), I couldn’t believe my eyes how many nozzles there were and how each one did something different. I can’t believe how many ways there are to decorate a cake. It really was so much fun and I really hope that we can do that ok. Not only was it fun to do, but the cupcakes were delicious too. It was one of the best days of my life.
My birthday is coming up in 2 weeks. February 7th is not just going to be a special day because it is the 50th Superbowl Sunday, but it is also my birthday. Maybe I will get the best gift ever… which is a miracle of getting better. I doubt it because every time I wished for that for my birthday or asked for it for the holidays…. It never happened. So why should I think it will be any different now? I used to hate having my birthday on the weekend and if I was younger, I would have been going bizerk if it was on the same day as Superbowl Sunday. I was always a person who had to celebrate my birthday. But now I have nothing to really celebrate and no one to celebrate with (besides my parents, Scooby, Max, and Missy), so it just will be another ordinary day filled with pain and suffering. I can’t even go out to eat or do anything special to celebrate it with (especially when you are strapped for funds and you can’t do anything anyway because this horrendous disease has robbed you of everything that you can possibly have). So at least when I don’t have anyone to celebrate with, I can blind myself and say it is because of the football game. Gosh… I can’t believe how many people walked out of my life when I got sick. You really learn who your true friends and family are when you get sick.
Speaking of my parents though, we basically sold everything in order to get as money as possible to pay for the medical treatments that I desperately need. However, I always wanted an anklet and my parents gave me my mom’s anklet that my dad gave her on September 9, 1971. It had two hearts (each had his/her name on it) and the date on the back. I will wear it forever, and ever and treasure it forever and ever. I can’t believe they gave me something so precious.
Well… I hope everyone made out ok with the blizzard (for those that were affected). I just wanted to update on all that is happening. A lot has been taking place and also wanted to let you know about the trip to Nebraska. I also wanted to ask for your help in trying to raise funds because they are so desperately needed. I am really running out of time and if I don’t get the treatments soon, I don’t think I am going to make it much longer. If you have any thoughts in raising money or can spread my link (www.gofundme.com/help4Fallon), I would really appreciate it. Please feel free to email me with any questions or comments at Femirsky@gmail.com. I will appreciate any ideas. Thanks again for all your help and support. I definitely wouldn’t have made it this far and been able to hang on this long without you.