I haven’t written in awhile and I wanted to update you on all that has been happening. I also want to thank everyone for the endless amount of love, support and prayers that have carried me through the most difficult battle of my life, once again.
I know so many of you continue to take this journey with me and I want to continue to share it, but right now talking, writing, or even thinking about the past months is still a bit too overwhelming and my body and brain need to recover. So if I haven’t posted in awhile and my posts aren’t like they usually are… just please bare with me.
2 months ago I found myself back in a place I’d hoped to never be again… back in the hospital and fighting to survive! I ended up falling and suffered from a massive hip fracture, pelvis fracture, and a broken femur. I guess when I do something… I do it good. Even the doctors all said that this type of break is rarely seen. To think… it was all because I fell. But that is what happens when you are as ill as me and when your only 33 years old but your bones are that of a 90-year-old woman.
I was so very sick that the surgeon was literally told by every single doctor not to operate because I would never make it through the operation. They even said that if I did make it through it by luck that I would never recover. Yet, after contemplating what to do and also trying to boost me up the best that they could, the surgeon decided to operate at the end of the 48 hour window because that was all the time that was allowed before they wouldn’t be able to operate. But due to my severe illness, they decided that the safest way to have this operation was to be awake for it.
What a horrible surgery to have. When doctors hear the surgery that I had and then that I was up for it… they can’t believe it. All I was given was an epidural. Oh my goodness. I thought that I would never make it through it. The surgeons literally had to drill out the bones in my leg and insert rods through them, as well as place screws and nails through my hip, knee, and femur. I thought that this surgery would never end. In fact, when I was able to finally speak and the surgeons could make out what I was saying, it was the time that they were stapling me and sewing me up. The first thing that I said was “Get the F*** out of me!” I never felt pain the way I did during this operation!”
I remained in the hospital for the next 2 weeks. Thankfully my dad and Scooby remained right by my side as well. I must say that I wouldn’t have made it through without them. Scooby was the first dog ever allowed in the operating and recovering room. What an amazing dog Scooby is. I seriously don’t know what I would do if I didn’t have him. He really is a huge help to me!
I can’t believe that this happened to me. Not only am I officially the “bionic woman” because I have rods, screws, nails, etc. in me, but it has really taken a toll on my whole entire body and illness. I am now medically in worse condition than ever before and I desperately need treatment to save my life more than ever too. But unfortunately I cannot receive the treatment that I desperately need because I don’t have the funds.
My world has literally been turned upside down with this new problem. I am sicker than ever and I now need more treatments that I cannot afford. Time is ticking down on the clock before I detonate and I am racing against it. I desperately need help because my organs are shutting down, my bloods are dropping, etc.
I will probably never know or understand why this happened to me. I keep thinking what I ever did to deserve this. I just want a normal life. I was robbed of so many things and everything that people take for granted… like walking, eating, going to school, working, having a social life, working, going out, etc.… has been taken away from me. I know I have a huge road ahead of me I need to just focus on today, but it is so hard when the cards are constantly being stacked against you.
But I am still trying to get well. Trying my best to conquer this disease and not let it conquer me. I may have lost some battles, but I am hopefully going to win the war in the end. I just need some help from others because I can’t do it alone anymore. I need the prayers, support, and even some help financially from others if I am going to get better. I hope I am not asking too much, but even a simple donation of $1 is one less dollar than I have to come up with and one less dollar that I have to pay for treatment to save my life. So if you can contribute anything, help me with a fundraiser idea, or even spread word of this and my website (www.gofundme.com/help4fallon) I would greatly appreciate it. Gosh… its not like I don’t have enough to worry about. With all that I have to worry about with my body shutting down and everything… worrying about money issues and where I am going to find the money for treatments should not be one of the things that I should have to even consider or think about. You know? How am I supposed to totally focus on my health and putting all my energy and power and focus into getting well when I have to worry about finances and how I am going to pay for the treatment that is going to save my life? It shouldn’t be like this. After all… I am weak enough. I am not strong enough to be able to worry about all this extra burdens. How much can I handle before I officially break?
I have been really trying to get well though. Gosh… I never thought it would be this hard. I can no longer be by myself at all, which means that I have to have a ‘nurse’ with me at all times. Yet, to have someone in the house is so expensive and the insurance isn’t covering it. Just another expense on top of the other expenses. It just continues to snowball. The bad part though is we don’t know how long we are going to be able to keep having a nurse, which is something I desperately need because of the cost of how much one costs. Money doesn’t grow on trees and there are limits to limits. With not receiving help from others, it really severely limits what I can and cannot do and it really jeopardizes my health. So I have to really prioritize what I need and don’t need
I have been going to Physical Therapy 3 times a week and trying to get movement in my leg again. And to think… Scooby is with me every single time. He really helps me get through it! It’s so difficult especially when I know there is a rod in my leg. Every time I fall or I turn in the wrong direction or feel something new… I always freak and think that a screw or nail is coming out. Even though the surgeon and Physical Therapist said that there is ‘nothing to worry about,’ I still do because when I had the surgery the surgeon said ‘it was like putting screws and nails into butter.’ Knowing that he compared my bones to butter… it really freaks me out. Plus with the way my entire body is and how fragile I am… anything is possible.
The hardest thing though has been getting over the feeling that I am walking on sticks. It took my forever to feel like I had a ‘leg’ again. I kept feeling that I had a bone from the leg and then a rod next to it. But then one day it just registered that my ‘leg’ was back and the rod and leg was one. I can’t tell you enough how good it feels to actually feel like I have a leg back!
So I have been trying to make improvements with physical therapy. I am in a real battle though because I am basically in a no win situation. In order for me to get better from the broken hip, femur, and pelvis… it really aggravates and makes my neurological illness worse. That is why it is really important to seek treatment and be able to treat my illnesses as well because not only is it causing me added pain but it is also spreading my disease and making me deteriorate worse (just in a different way).
Unfortunately in order to recover from the breaks, I need to do certain things like really put pressure on both legs, wear a shoe on the left foot, put tape on the legs, etc. which all cause havoc to my illness. I am extremely hypersensitive and doing all this causes real pain to me. Yet, if I don’t do this, I won’t recover because I need to put pressure on both legs in order for the breaks to set properly and for blood flow to resume in those areas, which will also further heal the breaks.
I am really trying to do as much physical therapy as possible. I try to bite my tongue and push through the pain as much as possible because I know how important it is to get through it. I know that I am also going against a clock because if you don’t do it in a certain amount of time not only will my disease spread and take over so that I will never be able to walk or be touched or anything in the leg and more because my disease especially spreads not only through ‘trauma’ but through something be immobilized, but the scar tissue will build up too much and I will then be permanently paralyzed in this position as well. So if I don’t want to lose function of my left side, I really need to do this.
So I try to do the exercises as much as possible. Even when I sleep or sit in a chair or anything else… I always sit with my knee bent because my knee is so stiff from the rods, nails and screws and I can’t bend my leg. So we have really been working on bending my leg.
Besides PT, I have surgery on my intestines to clean them out every week. I still have to go to Cleveland to have my colon removed, as my entire GI track is dead because of my gastroparesis. In fact, I should have been there in September if it wasn’t for this little accident that occurred. But in the meantime, I am going every week to the hospital to have my colon emptied because nothing moves through and as a result, I am filling up with toxins from everything that is sitting in the colon and not moving. They are also worried that I will end up going into sepsis because of this.
This is just one more thing to worry about. With all the new expenses that we have to pay for and it isn’t like we even had the funds before… we don’t really even know how we are going to get to Cleveland to have this operation. Dad and I were talking tonight and we were saying how desperately we needed to get to Cleveland as soon as possible, but we don’t know how on earth we are going to afford it because the little money that we had before (which wasn’t even a lot before and probably wouldn’t have even covered the expense before) is no more. So we are really in trouble. We really don’t know what we are going to do. So we are really hoping that perhaps something might come along… that a fundraiser will work, I will perhaps receive a lot of donations, etc. We are just praying something will happen. That is all that we can do right now.
In addition, we go for ketamine as well once a week. Not only am I given the ketamine through a whole day infusion, but also I am given ketamine in form of a block into my spine. I ideally need to get to Mexico because the amount of ketamine that I need (especially now because I am so much worse) is not FDA approved, but since I don’t have the funds for that either, this is the only option that we have. Although this amount isn’t enough to ‘cure’ me we are hoping that it will at least help with stopping the progression or slow it down, as well as help with the pain.
Gosh I really gotta get better. This has been horrible. I have a hospital bed in my living room and all I want is my life back. I am just praying that it happens!
On the bright side, I finished reading my first book in a long time. I can’t tell you the last time I actually finished a book. It was from my favorite author, Sophie Kinsella. I finished it just in time too because her new book is coming out the last week in October. I am now reading another book from my other favorite author, James Patterson. It is called “THE MURDER HOUSE!” His books are usually fast reading so I am hoping to be finished with it by the end of the month so that I can read Kinsella’s new one called “SHOPAHOLIC TO THE RESCUE!”
My parents’ anniversary is quickly approaching. They are going to be married for 40 years. I really want to make it extra special for them, but my hands are tied. They are really special parents who have done so much for me and deserve the very best. I can’t thank them for all that they have done for me and can’t tell them enough how much I appreciate it too. I feel so bad for all that I have done to them because they definitely don’t deserve this. They should be at the point in their lives where they should be enjoying themselves… not having to suffer because of me. They shouldn’t have to be burdened with problems because of me. So I really want to do something nice for their anniversary even though I can’t really do much and I am short on funds. I do have some ideas for something though, but I am not going to say right now because don’t want to ruin the surprise just in case mom and dad see this. But it is the ‘ruby’ anniversary and I want to make it special!
Halloween is also coming up. It used to be my favorite holiday of all times. I used to be the first one to go out and decorate the house and get the pumpkins and everything. I used to deck the entire house out with so many decorations from spider webs to corn stalks to hay to statues to tombstones to pumpkins to so many other things. I even went to get the hugest pumpkin that I could find to carve. Yet, you can see how things have changed because I don’t even have the energy or desire to do that anymore. Even to cut open a pumpkin and to make a jack o’lantern doesn’t intrigue me anymore. Of course I will still do it because it is a tradition and this is the only time when you can get pumpkin seeds and they taste the best. When you get pumpkin seeds in the store… they never taste the same. So… don’t want to miss out on that.
But I do have to say though it doesn’t even feel like it is Halloween approaching. I look at other houses and don’t see decorations like I used to when I did growing up. I remember always seeing other houses being decorated… even if they just had pumpkins outside. Where did everything go? Each year it seems like there is less and less trick-or-treaters and less and less people decorating. I don’t know but it seems like holidays are just getting less and less in celebrating. People aren’t into the holiday season anymore!
But I must say that Scooby is all set for Halloween. Scooby of course has a Halloween costume. I am not going to spoil it though and tell you what it is or post a picture yet. You will just have to wait to see it. I must say though that he does look adorable in his costume though. I can’t wait for him to wear it.
Scooby is really an awesome dog. He has been going everywhere with me. He does so much that he literally zonks out in the car all the time!! He is so funny because he acts like he has such a hard life!!
Well… I guess I wrote enough. I just wanted to give an update as to what is happening. Today while the road to get back to where I want to be seems long and I feel weak, I am still here with another chance to regain my life. I am certain that with the help of my incredible family, friends, dedicated doctors and supporters that anything is possible. I just hope that I get the opportunity! I can’t do this alone and therefore, I am hoping through the support of my family, friends, and supporters that I never will have to. But I really need as much help as possible in getting funds so that I can get the lifesaving treatment that I desperately need. No donation is ever too small. Please spread the word of my website (www.gofundme.com/help4Fallon) because my life depends on it. Thank you again for all your love, prayers, and support.