Well less than 2 weeks and counting until we are hopefully off to the Cleveland Clinic in Ohio. When I say “we” … I am talking about Dad, me and of course the Scoopster!! Can’t forget about him! Am really suffering and it can’t come soon enough. I just really hope that we are going to be able to go because we are really strapped on funds.
I really need your help in order to make this trip happen. I have less than 2 weeks and we really need all the donations that we can receive because we really don’t have the funds to go. My illness is extremely costly and we can’t even afford the medical costs of the treatments, medications and doctor appointments just in New York. However, since I suffer from such a complicated and rare illness, I need to travel across the country and see specialists that cost additional funds, which we of course don’t have the money for because it really takes a huge toll on the finances because between the airfare, traveling expenses, living arrangements, doctor appts, treatment, etc. it is extremely expensive.
Not only were we having a very difficult time paying for my medical treatment before I broke my hip/femur/pelvis, but when I had this accident, it really took a huge toll on our finances. We had to pay for so many unexpected treatments and expenses that cost us way out of our budget. So many things had to be paid for out-of-pocket including a homecare nurse because it took until just recently to be approved for a nurse to be able to come to my home under the insurance. Gosh… isn’t it amazing that you pay so much for insurance and yet when you need it… it either takes forever to get the approval for things and it is like pulling teeth (so you end up paying so much out-of-pocket in the interim) or it doesn’t help at all.
So if there is anything that you can do to help us receive donations so that I can receive medical treatment, as well as help me get to the Cleveland Clinic in 2 weeks, I would really appreciate it. Please pray that everything will be ok and please pass the link for my donation page along. I will appreciate any donation whatsoever, as even $1 is one less dollar than I have to come up with. I know I sound like a broken record already, but it is just that I am really suffering and need so much urgent medical treatment, medications, and to see doctors, but I cannot receive or do any of it without help. I am really going downhill fast (not to mention all the physical and emotional suffering I am enduring on a daily basis) and I really don’t want to do this anymore nor do I want to die, which will be the end result if I don’t get the help that I desperately need. So please help me and pass this link along: www.gofundme.com/help4Fallon.
Well…a little less than 2 weeks and we should be on our way to the Cleveland Clinic. I really hope I get there because something has to be done and done quickly. I am suffering so much and my stomach and intestines are out of control. It is at the point that I can’t even go one day without having at least 2-3 attacks of abdominal pain, which each last about 2 hours each. They are like having contractions when giving birth. I can feel them coming and they continue to build and build until they peak, and then they slowly dissipate. However, during this time all I can do is keel over and lay in a fetal position and cry because of all the pain.
I am also filling up with fluids and yet I am extremely thirsty. The doctor claims that I am just not absorbing anything anymore and as a result, my colon GI system is overloaded with fluid. I went to have my intestines cleaned today and he saw how overloaded with water that I am. My organs are shutting down and all this water is not only giving me edema, but it is flooding my lungs and giving my heart problems as well. The doctor said he never saw it so bad. The doctor said that he couldn’t even drain the fluid out because of all the other matter that was sitting in my colon and such that doesn’t pass because my colon is ‘dead!’
The doctor said how urgently I need to have the operation to get my colon removed and how I need the transplant. He said that if something isn’t done fast, I will end up dying. He also said how it is getting so bad that I might need an ostomy and a J tube in order to save my life. In this way, I will be technically getting all the nourishment and fluids I need, but I will be in psychological hell the rest of my life because I will be constantly thirsty and hungry because I will never be able to eat or drink again. The doctor said that with my body not absorbing, there is no way that I can eat or drink anymore or we will end up having this problem. So he said that by bypassing all this and just putting everything in through the J tube (which is directly into the intestines and will be low enough to hopefully avoid all the dead areas), I will get fed and receive fluids that way.
But to be honest, that is no way to live. Can you imagine never being able to eat or drink again? I will be constantly thirsty and hungry even though I am technically being fed. I will never be able to go to a restaurant because all I will be able to do is watch everyone else eat and drink. This is definitely not the life that I want. That is why I need to have that surgery and have the transplant.
I can’t go to the bathroom because nothing moves through due to my entire GI system being paralyzed. However, there is so much mucous and fluid in me that it basically just comes out of me. I have to wear a diaper at night because of the fluid overload coming out of me. I feel like such a baby because I have to wear a diaper. However, it is getting to the point where a diaper isn’t even holding everything. I can’t tell you how many times I have had to even change my entire bedding because of the fluid leaking out of me and the diaper. This is not the life I want.
In fact, it is getting so bad that I am leaking fluid during the day now as well. I would hate to have to wear a diaper during the day, and I am freaking that it will come down to that. Today when we went to the hospital to have my GI system cleaned out like always, I almost turned around because of this. I ended up having fluid leak out of me and it went through everything. I was so embarrassed that I didn’t even want to get out of the car. I was in such desperate need of getting a change of clothes that at 7 AM, I called up Duane Reade to find out if they perhaps sold sweatpants. My dad kept telling me that they didn’t, but I was hoping that he was wrong. Yet, like always, he was right. I had no other choice but to either go in like the way I was or go home. Since I knew how desperately I needed this procedure, I ended up taking off my underwear and just wearing my sweats. Thankfully with the color that I was wearing that you could barely see it. But just knowing what happened was enough for me to be completely embarrassed. I just don’t know how much more of this I can take.
I also have to go for a CT scan as soon as possible. I went to the wound care specialist because I have a stage 4 bedsore due to the fact that I am only in the 60s in weight and when I broke my hip/pelvis/and femur the nurses in hospital literally left me in bed and my boney butt gave me a bed sore. Anyway… even though the bed sore is healing, the doctor is worried that I have osteomyelitis, which is a bone infection and extremely dangerous. It is something that needs to be treated right away because you can die from it. So we really have to move on this because if it is a bone infection like she suspects, I need to see an infectious disease doc immediately and be put on a course of antibiotics immediately. If it doesn’t clear up in 6 weeks, then I will need further surgery.
So now that I have this problem I have to wear a special pad and bandage so that it protects not only the wound, but it protects the bone as well because I am so bony that the doctor is worried it is going to break through the skin again. The doctor also doesn’t’ want me sitting directly on my butt and also ordered me a special cushion and mattress to use. Gosh… Never a dull moment.
But other than that… life continues to move on. I am getting Scooby ready for the big trip to Cleveland. This will be his first time traveling. He has really been my best friend. Without him… I doubt I would have made it this far. People say that the reason that I even gotten better was because of him. They are probably right.
Scooby is one terrific ‘service dog’ who according to his trainer is doing his job perfectly. He is definitely providing a great service to me. She said that he really has a strong bond with me because whenever he sees me, his face lights up and he comes running. She can be with him and then when he starts to either pull or run, she knows that I am nearby. Even when we go to the hospital, my dad tells me that he stares at the doors that they take me through until I come out and he won’t take his eyes off of it, which can even be hours. He goes everywhere with me including all doc appts and even does acupuncture with me. He is just amazing!
I can’t believe how smart he is for how young he is. He only turned 8 months old the other day. I tried a new game with him the other day by putting treats in a cupcake pan and putting balls on top of it and guess what? He found took the balls out and found all the treats on the first try. I didn’t even have to help him.
He is also such a character because he loves wearing his clothes. He is just like a little baby. I may not ever be able to have kids, but he is definitely like my ‘baby!’ He has his own stroller that he loves (not to mention that I use it as a ‘walker’ as well) and he wears clothes like a baby as well. In fact, he loves wearing clothes so much that he will not even go outside unless he is dressed.
Speaking about being dressed… Scooby was a clown for Halloween and he was selected to be put up on the company’s website. They even want him to model other clothing as well. If you want to check his picture out, please feel free at http://www.baxterboo.com/p.cfm/shiny-clown-costume?utm_source=photo%2Bapproval&utm_medium=email&utm_campaign=photo%2Bapproval.
Well… I guess that is it for right now. Gonna go and rest because I have ketamine in the morning. Thanks again for all your encouragement and support. I can’t thank you enough. If you can continue to pray and pass my site along (www.gofundme.com/help4Fallon) I would appreciate it.