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.
I 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.
Scooby 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.
But 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.
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.