I know it has been awhile since I have written, but I have been so busy that I haven’t really gotten a chance to write. I haven’t been feeling well and then on top of that nothing has been going right. But then again… what else is new with that? Seems like the story of my life. Seems like the harder I am trying to get better… the faster I am falling. It is like I am drowning and no matter how hard I try… I can’t come up for air because I just keep getting bombarded with bad things happening. But I still try to keep positive bad and still keep and pray that one day I will be “normal” and healthy. I still am hoping that one day I will still be able to be independent, have a family, be able to live out my dream career of being a ‘doctor’ so that I can help others, and most of all… be happy and pain free. I keep telling myself “if there was no bad luck, then there would be no good luck.”
I was supposed to be leaving tomorrow for Nebraska so that I could see the specialists for my Gastroparesis. I was going to Nebraska because not only are very few hospitals equipped to perform intestinal transplants and rehab, it is also one of the best in the USA. Plus, there are only about 6 hospitals within the USA that perform multivisceral transplants and since it is 99.9% sure that I will need to undergo one because my entire GI system is basically ‘dead,’ Nebraska Medical Center is one of the six that perform them. I know it sounds strange to be saying that I will be going to a place like Omaha, Nebraska for such a difficult operation, but the doctors that I am seeing there are supposed to be top-notch. In fact, they have been recruited from other areas of the world to work there, one being Canada. This hospital and doctors are known to see only the sickest patients and the ones that they say “there is no hope for!” So many people go there as a last resort because they have been told that “there is no hope” or “nothing else can be done.” Yet, this hospital has shown them that miracles do happen and with appropriate treatment and through their help, they can be helped. So many people that were given death sentences are alive because they went to this hospital. I am only hoping that I will be so fortunate.
When you go to a hospital like this, you really become a family with the other patients, staff, and doctors. It is only a select number of patients that go to a hospital like this because like I said before it is really for the ‘sickest of the sick.’ Therefore, it is place where a lot of the patients are experiencing many of the same symptoms. The diseases may not be identical, but what each patient and family is going through is basically the same. So it is not only a place where you receive medical treatment, but it is a place where you can feel comfortable because you don’t feel so “alone!” Other people know exactly what you are feeling and what you are going through. It really takes a load off your shoulders when others can relate. In fact, even the doctors and nurses will call you even at home to check up on you. The people become so close there that even when they do get better, they still remain in touch with each other (including with the staff) and they continue to know all about the achievements that are happening in each of their lives… whether it is a graduation, marriage, birth of a child, etc. After all, without this place they wouldn’t have been able to accomplish all of this… so they are extremely grateful.
I really feel comfortable going to this hospital because of the way the staff (both nurses and doctors) treat their patients… not just when you go there and become an actual patient in the computer, but before you even get there. When the hospital got wind of my story, they were the ones who called out to me and reach out to me so that I could come to them. Even though I didn’t go to them right away because of expenses and I figured possibly I would do better in bigger and better well-known hospitals like Cleveland Clinic or Cedars Sinai Hospital, they would continue to call me and follow-up with me to see how I am doing and everything. No other doctor has ever called me consistently (or even at all) just to check up on me and to ask if I am ‘ready’ to come to them yet. But after careful thinking and after speaking to them numerous times… dad and I decided that this would probably be the best place for me.
So I was originally scheduled to leave tomorrow for the big trip to Nebraska. We knew that the plan was to get the colon removed even though my entire GI track is basically ‘dead!’ But since the transplant is extremely dangerous and is known to be one of the most dangerous transplants a person can have (the only other transplant just as dangerous is a lung transplant), we were going to try to just remove the colon and see if maybe I can gain some weight and get stronger before undergoing the mutivisceral transplant (removal of small and large intestine, stomach, pancreas, and liver). However, it was all up to the small intestines and they wouldn’t really know the exact plan of action until they got inside.
They are hoping that it is just the large intestine that is causing the main problems and if they remove it, I might be able to buy some time with the other organs because they might not be as bad. The large intestine is leaking toxins and has obstructions, which are poisoning my other organs (including my heart) and shutting them down. However, if the small intestine is just as bad when they go inside, then I will need the transplant sooner rather than later. This is the reason why I go to the hospital every week to get my intestines cleaned out in the OR. Nothing passes through… especially in the colon.
So the only way things basically come out of me is mechanically in the hospital in the OR. My colon is so ‘dead’ that there is no peristalsis basically at all. They have me giving myself daily injections to try to stimulate the peristalsis, but it really doesn’t do much because it is too far gone. My colon is also way too dilated and distended that it literally takes other nurses and staff to help the doctor navigate the tubes and everything because they have to hold onto the intestines and everything because of how ‘floppy’ they are. It literally takes the doctor over an hour just to get to the cecum. In one week, I can get so filled up with fluids, debris, etc. that it is literally impossible to remove everything. But the doctor does as much as he can because otherwise I would continue to fill up on toxins and they would poison my organs and I will die. In addition, it also makes me extremely distended because nothing passes through and by the time the week ends and it is time to have the procedure, I basically look like I am pregnant. So I am extremely uncomfortable and in agony without him cleaning me out. Finally, they do this procedure because they are afraid my intestines will rupture since nothing passes through and I will then go into Sepsis. That is the last thing we need on our hands because then we will really have an emergency and a crisis on our hands.
But unfortunately we had to cancel the trip and postpone it to March 20th. Actually the doctor canceled us because he had an emergency. In a way though, we were very lucky that he did because if he didn’t… we had no idea how we would get there anyway because we didn’t have the funds to go. As much as we tried to pull everything together and try to raise as much as we could, we didn’t receive as many donations as we would have liked or was hoping for. We are extremely thankful for the ones that we did receive, but unfortunately what was did receive was not nearly enough to pay for what was needed. So we are only hoping that this extra month will help us get the additional funds that we need so that we can go and get to Nebraska.
To make matters worse though, by postponing the trip one extra month it cost us even more money. But we really had no other choice though because the doctor wasn’t going to be there for the original date anyway. Even though the airline was willing to ‘waive’ the cancellation fee because I spoke to supervisors and had letters stating how it was for a medical reasons and out-of-my-control that the change was needed, I still ended up paying a whopper. These plane tickets originally were already very expensive… like close to $1000 each way per person. But now with the change in days, they charged me another $700 because of the change in price. When I tried to complain, there answer was “But at least we saved you the cancellation fee, which was $200 per ticket.” Gosh… but still… when money is tight that $700 is A LOT!!
When it rains it pours. Things definitely don’t go my way because I am now having a problem with the insurance company getting my morphine approved. This illness is so painful and intense that many pain relievers are not really effective, leaving you with the feeling that your body is on fire and in so much painful agony. On the McGill Pain scale, which is the scale that doctors use to measure pain intensity, RSD is the most painful disease known to medicine. It ranks higher than even natural child birth and amputation. Therefore, it is important to remain on the Kadian because it is one of the very few drugs that has been helpful in treating this illness.
The health insurance refuses to approve it and I desperately need it because not only is it one of the very few medications that work on me, but I have severe autonomic dysfunction and any change in the amount of dosage wreaks havoc on my body. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. I am on lots of medications, as I take over 50 pills daily. However, this is one drug that I cannot have a change in dose because the slightest change is greatly affected and will send my body into extreme chaos. It can literally kill me because of the autonomic dysfunction. I have tried in the past to go down on the amount of morphine taking because who wants to be on medication and I wanted to really see how much it was helping, as well as if I could do without it and the just going down the littlest amount was sending my body into severe autonomic dysfunction. There was no way we could continue to go down lower.
Even in a normal person you cannot just ‘stop’ a medication like morphine because you will have severe withdrawal and side-effects that can even lead to death. But with someone like me who is so very ill with dysautonomia along with other problems, it is definitely sentencing me to immediate death if they stop it. It was already established awhile ago (even before this al came about) that when the time came to come off these drugs, I would have to be placed into a coma because otherwise my body wouldn’t be able to handle it and I would probably end up dying. So for the insurance company to just stop authorizing my medication… it is like they are murdering me.
The doctors have been trying to appeal it many times and been on the phones constantly with them trying to explain how important this medication is to me and how I am not just an “everyday typical” case. I have also written letters and we have even contact the New York State of appeals as well. But the insurance company is still reluctant to approve my medication. But the fact of the matter is that I can’t live without this medication because it is drug that is making me able to live and manage this disease to a point. and we have no idea what we are going to do because it is so expensive. It is like $1300 for this medication and of course we have no way of affording that. But without it… I am going to end up dying. So that is another reason why we are desperately needing all the donations that we can receive. I just don’t get these insurance companies. We pay so much in health insurance and yet they don’t cover squat!
I also recently got into a car accident because a guy ran a sop sign and as a result, I ended up tearing my rotator cuff and injuring my ribs and sternum extremely badly. They aren’t sure if I have a slight break in the ribs or sternum either, but it isn’t like they can do anything for it anyway so it really doesn’t matter per se because the rehab is the same for either. They took Scooby and me to the hospital by ambulance, which was a new adventure for both of us. Dad met us at the hospital because he stayed behind with the car to make sure the tow truck came and since he wasn’t injured. Never a dull moment. We are so afraid though that this now also spread the RSD badly because it spreads through trauma and this was a very traumatic experience.
Thank goodness though that Scooby was OK. If he wasn’t seat belted in his car seat, he wouldn’t be here today. I am such an advocate for seatbelts and car seats for dogs. I am so fortunate that he was in his car seat because he wouldn’t be here otherwise.
I also recently had surgery on my ear. I had to have it closed up because it split open. I knew that It was probably going to have to be done, but I was hoping it would possibly heal on its own. We don’t know exactly how it happened because I never wear big or heavy earrings, but we think that since I down turn or move when I sleep or anything because of the pain and my illness… eventually the pulling and rubbing on the pillow/bed just kept moving the earring enough to tear the ear into two. I was supposed to undergo this surgery over the summer, but just when we had it planned… I ended up in the hospital having surgery to repair my hip, femur, and pelvis. So there went that. But I was hoping that maybe during this time that it would posisby heal… but obviously I was wrong. I knew deep down it was only a matter of time and the time finally came. I couldn’t wait any longer and therefore I went about 2 weeks ago to have my ear sewn back together. I can’t wait to be able to wear earrings again, but of course I will have to get my ears pierced again and to be honest…I don’t know if I can do that again. I became a chicken.
But before I end this blog, I want to put some good stuff in it so it isn’t such a bad and depressing blog. My birthday was about 2 weeks ago (the 7th) and it was one of the best birthdays that I have ever had. I can’t remember the last birthday I had that I could say that to. I had friends come over the house to celebrate my special day with and it really was a dream come true. I really never thought that it was going to happen because I am so used to disappointments. Yet, everyone came and I had such an amazing time. I can’t thank everyone for making my birthday so wonderful. I can’t tell you how happy it made me and every time I think of it… it just brings a smile to my face. I only wish it will happen again. But just like I say every birthday… next year maybe I will be fortunate to be able to eat birthday cake. I did take a little piece though even though I suffered for it later on because it made me so very sick. I did make a promise though that when I do get better I am having one huge celebration. So don’t worry… all will be invited.
Scooby has also been doing wonderful. He has started agility training. Not only is he certified as a ‘service dog,’ which is something for me and he works extremely hard for it. I always get compliments on how well behaved he is and people are shocked that he is only 11-months old. He really has great manners and a great behavior, as I even taught him to wash his paws at the sink. But I figured that since he works so hard, he needs some fun too. He loves jumping and therefore, we started him with agility training. He absolutely adores it and he was so good at it… even the the first time he tried it. I love watching him do it because it gives me so much pleasure to see him having fun and being happy. It also gives him confidence like you wouldn’t believe. I have seen a change in him like night and day ever since he started this agility training. He is such a great runner and jumper. One day I will be able to do that too and we can go running together. I can’t wait for that day to happen.
Well… I guess if I want that to happen, I first have to get well. If you can please help in any way possible, we would really appreciate it. Whether it is through a donation (even a simple dollar is greatly appreciated because a dollar from you and a dollar from someone else adds up, and it is one less dollar than we have to come up with), by passing my website link along to others and asking them to donate and help, fundraising, or even giving me a fundraising idea… it would be greatly appreciated. My websites to pass along are www.FallonMirsky.wordpress.com or www.Gofundme.com/help4Fallon. Feel free to also email me at Femirsky@gmail.com.
I really want to apologize for still asking for donations after all these years. I know I must sound like a ‘broken record’ already and you are probably even tired of hearing my story already. People sometimes think that I am doing better because I ‘look’ better. But believe me… appearances are deceiving. Behind this façade is a very ill person who is hanging on her last thread. I just want to be as normal as possible and I don’t want to have people feel sorry for me. I don’t want to be sick and I feel that if you ‘look good’ than you ‘feel good.’ I also don’t want people seeing the true me and feel sorry for me. So I try to put on the most makeup and dress as best I can (even on the worst days… you will never see me without makeup or being dressed because I always try to hide this illness and all the unhappiness and pain that accompanies it at all cost). Plus… I get dressed every day to look my best because I can’t give in. I want to be as ‘normal’ as possible and I also know that if I give this disease an inch it will take a foot. So I have to fight in every way possible so it can’t takeover. Finally, all the pictures that I post are basically airbrushed. I will rarely, if ever, post a picture that is not airbrushed because like I said before… I want to look my best and be as ‘normal’ as possible. So I just wanted others to know all this because it has been mentioned to me ‘why am I still asking for money if I am well’ and I just want to be up front with everyone that I am far from that. I just don’t want others to see the real me. In fact, I compare myself to an ogre as well as a dinosaur (Stegosaurus). The only difference between them and me is that I don’t live in a forest and I am not extinct yet…just endangered. I am not only ugly, but I change colors (blue, red, purple, even black in a split second) and my spine protrudes like a stegosaurus.
But what is keeping me going and helping me keep my strength is my dog. I can’t tell you enough what Scooby has done for me. If I didn’t have him, I probably would not be here today. He has done so much for me that even the doctors have agreed that I probably would not have lasted the way I have if it wasn’t for him. In fact, the doctors accredit Scooby for surviving the surgery I had to repair the fracture when I broke my femur, pelvis, and hip and had to have the rod, screws, and plates placed in me. Everyone was telling my head surgeon not to operate because I would die on the table and then even if I did make it through the surgery, I would never recover. But look who is still here! Scooby and I have been through so much together from going through the operation when I had the surgery for my hip, femur, pelvis (he was in the OR and recovery room) and then spending 2 weeks in the hospital with me, going into the OR and recovery room every week when I get my intestines cleaned, going to appointments, going on planes, going in ambulances, traveling the country, etc. He is my best friend and partner-n-crime. He has his own car seat and sunglasses to go cruising. You will rarely see one of us without the other. In fact, I go to Physical Therapy… I am working my butt off at times while he is sleeping away on the table. He absolutely loves doctor tables and everyone loves watching him leap onto them. He picks whatever table he wants whenever we go to the Physical Therapy place.
Scooby is just a one-of-a-kind dog and I am so lucky to have him. He looks like a real life teddy bear and so many people think he is a teddy bear until he starts moving. I dress him up everyday and he is just like a little baby. He even has a stroller. I may never be able to have my own family and a kid… but he’s my precious baby and he is going to keep me going. I can’t believe he is going to be 1-year-old next month.
Thanks again for all your support and encouragement. I can’t thank you enough for everything that you have done. Your prayers, support, and encouragement is very much appreciated.