Hey! Sorry I haven’t written in a bit. Just trying to stay alive!! Literally!! So many things are happening that it feels that the harder that I try to get better, the faster I am falling. It feels that the harder I am trying to get come up for air, someone keeps putting more and more weights on my legs to pull me under the water and to drown me. I feel like I can never catch a break!! In fact, I think that I might be switching to making updates through “VLOGS” instead of “BLOGS” because it is getting to the point where so much is happening and it is getting too difficult and tiresome to put it all down on paper. Plus, I realized that most people (including myself) rather watch something than read, and plus it will also go much quicker. It would also give you a clearer picture as to what is occurring with my illness and perhaps I can bring more awareness to this horrible condition.
It appears that things are starting to really go downhill. Even though the doctors always said I was “lucky” and “amazing” to have made it this far without those lifesaving surgeries that I desperately have needed (but haven’t been able to afford … it looks like my “luck” is running out. In reality, I should not be alive, as there is no real explanation as to why I am “alive” today. My organs are in failure, my weight is only in the high 60s/low 70s, my bloods are low, my electrolytes are off, I have no nutrition, etc. Doctors don’t even know how I am functioning, but they are saying that it is because of my dog SCOOBY and because of all the thoughts and prayers from all of you that I have made it this far.
Yet, it appears that even though I have been able to somewhat “function” and survive despite all these problems and my body failing, as I have been diagnosed with “Failure to Thrive,” my body is now not able to deal with all that has been occurring anymore. It appears that everything that is happening inside of my body is now really taking a toll on my health and causing me to really have a downfall. The days have been getting harder, as it is getting harder to breathe, eat, fight, and even to just stay alive. That is why I really need to have the operations as soon as possible now.
In the last two weeks, my bloods have fell extremely low (which were already in critical values already) and my body was tingling and numb. It felt like I slapped something incredibly hard and the tingling resonated nonstop throughout my entire body. It went throughout my face, hands, and entire body. In addition, I have been getting nonstop spasms throughout my body that are incapacitating and basically impossible to break. It was particularly worrisome because even though my bloods have always been “below normal” and at risk for heart failure and arrhythmia, it was more probable of occurring with the lower values. Yet, when they brought up my electrolytes a bit, I started to feel better. Yet, with my body, this is only a temporary fix and unless the “problem” is fixed… I will be back in the danger zone.
In addition, when I went into the hospital to have my GI track cleaned out, as I go into the OR every week to do that because my GI track is basically completely paralyzed/dead and if they don’t do it I will go into sepsis… I ended up giving the entire hospital a huge scare as my blood pressure dropped to about 60/22. I am always used to my blood pressure dropping to about 70/35, but when they said my bottom number went down to 22, it really scared me. When I got out of the procedure, they immediately got my dad and he stayed by my side along with the nurses because they were afraid something was going to happen to me.
In addition, about two weeks ago, they found another adenoma in my colon. They found one before and removed it, which was also cancerous a couple of months ago in the splenic flexure. But they couldn’t really see behind it because of my “dead” and distended colon. However, they did remove it and they said that this is just “one more reason I need my colon taken out asap.” Well, like I said before… two weeks ago they found another one in the colon and now having two in just a few months means that this colon is really just a ticking time bomb in more ways than we originally thought.
To make matters worse, I also have to get surgery on my hip and femur again. About 1 ½ years ago, I fell and ended up breaking my femur, pelvis, and hip. They ended up putting a screw, nails, and a rod in my femur. However, due to how thin I am and because my body ate away all my muscles, the screw is too big for my body and as a result, the tendons are literally getting caught on the screw and snapping on it and tearing on it. So, they have to go back in and put a “smaller” screw into the rod that is in my femur. However, this won’t be an easy surgery at all because I also grew bone in my hip and hip joint that shouldn’t be there. I have bone overgrowth and therefore, they literally have to chop off all that extra bone as well in order to get to the screw. Not only will this be extremely painful, but it will be very blood too because apparently, there is a huge blood supply in the bone that they have to chop off. Going back into a second surgery to “revise” any equipment is always more difficult, but with all these other problems (not to mention I am not in the greatest condition to begin with) … it makes it even more dangerous. I just hate to go through that recuperation again because I remember how hard and difficult it was when I broke my hip/femur/pelvis initially. It was the worse surgery and recuperation imaginable and I swore I would never have this surgery EVER again.
But that surgery is going to probably have to wait because right now the more important surgery is putting the port and tubes into my heart to “feed” me and then getting that colon out. I am receiving absolutely no nutrition and I am so thirsty because I can’t absorb anything. So, in the meantime, the surgeon for my hip gave me a cortisone shot to try to help me deal with the pain for the screw.
My dysautonomia has also started up and gotten worse, which has triggered off the Reflex Sympathetic Dystrophy in my body again. I have severe discoloration in my lower limbs and extreme burning. It literally feels like my whole entire body is on fire. I have been going weekly into the hospital to get blocks and ketamine infusions, which they have even raised my dose a lot with.
I have really started INTENSE physical therapy. The doctors want me to keep my muscles going and to build up whatever muscles I can because I am literally “wasting” away. The only bad part is that it is not covered by insurance, and it is extremely expensive. We honestly don’t know how much we are going to be able to keep up with it since it is so expensive and my medical expenses are already astronomical. Yet, it is so critical to my because this is what is keeping my body moving and functioning. It is like I can’t live without it, but we don’t have the money to do it. I don’t know what we are going to do. The doctors need to me keep up my strength as much as possible and gain muscle, as this disease has taken all that. Exercise delivers oxygen and nutrients to your tissues and helps your cardiovascular system work more efficiently. In this way, my heart and lung health will hopefully improve, and I will have more energy to tackle daily chores.
Things are just getting progressively worse and I desperately need this surgery as soon as possible. My brother’s wedding is May 21st, and I am hoping to make it to his wedding. We are hoping that perhaps soon after I will be able to get the surgeries because we don’t know how much longer I can make it without it. I am so self-conscious to even go to his wedding because all I wanted to do is look ‘beautiful’ and instead… all I do is look like an emaciated skeleton in the dress. I also only wish that I would be able to dance at the wedding, but I don’t think in my condition it will be possible. So, I guess I will be watching from the sidelines.
Scooby has been doing terrific. I don’t know honestly how I would manage without him. He has been right by my side throughout this entire ordeal. I am so grateful that I have him. I love this dog to death. He follows me everywhere… even to the bathroom. When I have to leave him (on the few occasions), he will never rest. Instead, he just stands and stares at the last place he was able to see me and waits for me to return. He is absolutely my BEST friend.
Dad has been working harder than ever. He is doing whatever he can to pay for my medical treatment since it is so expensive. He really scares me because he is 63 years old and he is working nonstop and 7 days a week at times. His work isn’t just sitting behind a desk either, but he goes out and does actual physical labor. I don’t honestly know how much he can take between working so hard and all the pressure he is under because of me.
But to be honest… we really need help. If anyone can please think of any way of raising money for my medical expenses I would really appreciate it. I especially need money for procedures, therapy, surgery, and after care. We especially need money because when I have the surgery dad won’t be able to work and therefore, we won’t be having any income. Even after surgery, we will have to literally have to change so many things and get so many supplies (which won’t be covered with insurance) and therefore, we really would appreciate all the financial help that we can get. Even if the insurance does cover anything, it will be minimal. In addition, I am also worried that since I will probably need a bag, I will also need new clothes that are especially designed to hold and conceal the bag as well and therefore, I need to have money set aside for that as well. Having a bag is something I don’t want as it is, I really don’t want to worry about not having clothes to help “deal” with it.
But in the meantime, I keep pushing on. I keep trying to smile despite how bad things are getting. I am watching tons of YouTube beauty videos on makeup tutorials. Learning new ways to apply makeup since I love it so very much. I love makeup because it makes me feel pretty and it makes me feel ‘normal’ and not sick. My grandma always taught me, “If you look good, you feel good!” You can’t believe how much makeup can hide things. I have even been practicing on my mom and when I do her makeup… what a difference it is. I did her makeup for the bridal shower and she looked absolutely amazing.
Well… I guess that sums of everything for right now. Like I said… if you can think of any way of raising funds, please let me know. I don’t just write these blogs to ask for help, but I am hoping to bring a little insight into my life as what is happening and hoping to bring awareness into this horrible illness. In this way, even if I don’t get the help that I need to save my life, perhaps someone else reading this can be helped and know that they aren’t alone in going through all this stuff. Please email me at firstname.lastname@example.org for any suggestions, questions or comments. Donations can be accepted at www.gofundme.com/help4Fallon. I can’t thank you enough for all your support and for being there for me all this time. I really wouldn’t have made it this far without your prayers and support.