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!”
I 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 when 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.
I 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.
Besides 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 email@example.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.
Dad’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.
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.