Just wanted to write and say HI and catch you up on all that is happening. Chanukah is almost over and Christmas is about 1 ½ weeks away. That means that there is only 2 ½ weeks left of 2015. I only wish that means there is only that much longer left of being left in this “hell” because I am hoping that I will get a “miracle” this holiday season and I will then be able to start 2016 happy and healthy. I just can’t live like this anymore. The pain is just too intense and unbearable. My entire body is literally shutting down and the strength in me fighting is also weakening. I am still my hardest to fight, but I am no longer the “Energizer bunny” that can keep going on and on. My batteries are running out and running out quickly.
I really need help from others before my batteries run out completely and I lose this battle. I desperately need treatments and medications, but unfortunately without the help of others… it is literally getting impossible to get anything. This disease stinks because it is so expensive. I take so many medications that either have very expensive copayments or are not even covered at all, the doctors are not all covered on my insurance plan (and the ones that are covered still have copayments that quickly add up to astronomical amounts because I have to see them so frequently and the amount is not little either each time we see them), have traveling expenses because I have to travel across the country to seek the help of specialists because I am so sick and my illness is so rare that I need such specialized care, and even the procedures are expensive and costly.
I really need help and help as soon as possible. Besides having trouble affording treatment in New York and my medications and everything, we even are going to have to cancel my trip to Nebraska Medical Center in January and postpone it to the end of January. We were supposed to leave for Nebraska the end of December/beginning of January because I needed to seek the help of the GI specialists there because my colon needs to desperately come out, but due to insufficient funds, we had to reschedule it to the end of January. I am only hoping and praying that we will have the funds by then because I won’t be able to make it longer than that. Even the doctors are worried that I won’t even make it that long. Plus… my birthday is February 7th, and I would really love to be here to see it.
Since it is the holiday season and it is the season for “giving”, I am only hoping that perhaps others might help me be able to receive the best holiday gift of all… which is help to get the lifesaving medical treatment/medications/appts that I need to survive and to continue my daily battle. As this is the season for “giving,” please consider my treatment goal as an option for giving back and making a difference a person’s life during the holiday season. I can’t tell you what it would mean to me if you would be able to help me out… whether it is by making a simple donation (as there is no donation that is ever too small), by saying a prayer, or even by spreading my “gofundme” link (www.gofundme.com/help4Fallon).
So many things have been happening that I am literally freaking out. My white count has been very elevated and I have had severe pains in my stomach and bones. We know I have an infection stemming somewhere, but we just don’t know where as of yet. The doctors are thinking that it can be possibly a bone infection, osteomyelitis, but I need to go for a CT scan to find definitively if it is and unfortunately the insurance company has been giving us difficulty in authorizing it. We of course can’t afford it without them paying for it and as a result I can’t go for it until then. So I am basically in limbo until then. It just really stinks though because if it is a bone infection, which they suspect, it needs to be taken care of asap because bone infections are extremely life threatening and can disastrous if not treated immediately.
We also think that something is happening with my intestines. We already know how my GI system and intestines are failing me. We know that nothing moves through my intestines and that is why every week I have to go to the hospital and have my intestines “cleaned out” in the OR. I keep having toxins spilling out of my intestines because of all the stuff just sitting in my intestines and it is literally shutting down my other organs. The toxins are poisoning me and can easily cause me to go into sepsis. In addition, the doctors are also afraid that my intestines are going to rupture because nothing passes through and that is just another reason why I need to get to Nebraska asap. I need to get this GI system fixed and the colon removed before something major happens like I go into sepsis or a huge rupture happens.
With the white count being so high and there being blood in the mucous and stool, we are already thinking that there is a perforation in the intestines. However, we are thinking that it I getting worse now and my bloods are really falling.
I have a doctor appointment later today to find out about my bloods, but we really think that my bloods are falling. One of the reasons we are thinking this is because my whole body keeps going into cramps and spasms. In fact, it goes into such bad cramps and spasms at times (especially last night) that I can’t even walk. I woke up this morning with them so bad that I almost ended up in the hospital. These spasms and cramps are like the ones you get in your legs when you are sleeping and you see your body part twisting in one direction when it feels like it is going in another and you can’t untwist it. You know? I have been having problems with my hands and fingers having spasms for the past week or so, but now it is in my legs and feet. Something just isn’t right.
In addition, my body is retaining all fluids. I am filling up with fluids like a water balloon. I really desperately need to be pop. Both ankles and feet are so swollen and no matter what I do… the swelling won’t go down. Even if I raise them… the swelling won’t disappear. I’m scared because I am basically going for through everything that my grandma did before she died. It’s like I am reliving it.
My hip is bothering me too. I can’t walk. I went to the orthopedist and he said awhile ago that the screws were loose and coming out but he won’t go back in and tighten them. He won’t replace the rod and the only way he will take it out Is by giving me a new hip (which most people get) … But I’m not a candidate and he won’t do it. So I’m thinking of seeing another orthopedist and seeing what he thinks.
In addition, I have also been having vision problems. I went to the eye doctor and sure enough my vision is being affected by this illness. I had to get all new glasses now too, which of course is a disaster too because my lenses aren’t cheap. Unfortunately, due to my illness, I have to wear prisms and have a very complicated prescription that makes my glasses extremely expensive. Just the lenses alone cost nearly $1000. What makes it worse too is that you can’t just have one pair either because you have to have a spare in case something happens to one. After all, you can’t be left without glasses because that is the only way you can see. You know? So… I just don’t know what to do because I desperately need glasses so I can see, but as I said they are just incredibly expensive and I need 3 pairs (2 glasses and sunglasses). I can’t go into the sun without sunglasses because I am so hypersensitive and the sun will literally kill me. I just can’t catch a break.
So that takes care of everything. Scooby has been keeping me busy. It is his first holiday season so I am trying to make it as special as I can for him. I can’t remember the last time we celebrated a holiday in my house because of everything that is happening, but I want to make this holiday season special for Scooby. After all, Scooby is like my little baby. There is nothing that I wouldn’t do for him!! He is the coolest dog. He loves wearing clothes and he even has his own sunglasses. Like the doctors all say… if I didn’t have him, I probably wouldn’t be here today. They all think that the reason I am holding on and keeping going is because of him. They think that the only reason I made it through the operation for my hip was because of him. Perhaps they are right!
Scooby is just one amazing dog. I just actually found out that he has one of the longest lifespans, so I am really excited because that means he will be around for a very long time. He is being trained to be a “Service Dog” and he is doing amazing. When we go out to appointments and other places, he acts so good that everyone can’t believe how well he behaves. He really is terrific.
Well… I guess that is about it. I just wanted to update on all that is happening. I want to wish you a very happy holiday season again and hope that you get all that you want for the holidays. I am only keeping my hopes that I will receive my miracle this year. Keep those fingers crossed and please pray for me. If you can help me out in any way possible… whether by donating, praying, or spreading my link (www.gofundme.com/Help4Fallon), I would really appreciate it. Thanks again for all your support and encouragement.