I just wanted to write to let you know that I am on my way to Indiana because of the transplant. Things aren’t going well at all, as I am stuck at the airport. So I figured… what better time to waste since I have to kill like 3 hours than to write a little and inform you on all that is happening and let you know the latest. I am also suffering immensely, so I was hoping that perhaps writing would help me take my mind off the pain since there really isn’t anything else I can do.
Why does it seem that disaster always lurk wherever I go and especially when I fly? Dad and I seem never to have any luck when we fly EVER. We are always stuck at airports because of delays and such. But this time… being stuck in the airport really takes the “cake!” It has been nothing but pure aggravation here.
What a trip this is already and we haven’t even left New York. Thanks to my lovely brother, it started the trip off to a wonderful start. Thanks to him, we had no tickets to fly because the tickets that were supposed to be sent to us never came. I had to call them on Friday, but due to my brother being his “annoying” self, he caused problems, which resulted in the place that we were getting the tickets from going home. So, since they were not going to be in the office til Monday and there was no getting in touch with them again, we were out of luck with getting tickets. We were also waiting for tickets from SOUTHWEST for the trip to California, which we could have used in the meantime because they could have switched the tickets to go to Indiana instead, but those tickets never came either. It just so happened that the tickets that were designated for California were sent out Friday, and they were coming 2-day FEDEX. So, we were really hoping that they would hopefully arrive on Saturday since it was “2-days” and FEDEX does work on Saturdays, but Saturdays are not considered “business” days so we weren’t sure if they would come or not. Of course they didn’t come.
I was not going to buy another set of tickets because we could no way afford them. I already had 2 sets of tickets coming…. 1 set I missed out on because my brother was being his annoying self and the other set was in the mail and they were for California anyway (so they are still going to be used for that trip). However, after talking to Southwest Airlines and telling them the situation, they told me to come to the airport and they would acknowledge the tickets were supposed to be given and I would be able to get to Indiana. However, disaster only seemed to follow.
When we got to the airport, it was total disaster. We purposely took a morning flight out because we thought it would be easier on me and it would be less crowded. We thought it would have less chance of letting me catch an infection because I am so susceptible to any little cold or illness since I have no immune system. Plus, I am at my “best” in the morning and as the day continues on, I quickly deteriorate and by 3 O’clock… I am basically a “goner.” Anyway… all that careful planning was wasted because here I am stuck at the airport.
Originally, our flight was supposed to leave for Indiana at 6:50 in the morning, which would have made us arrive at 1:50 PM. It was the first flight into Indiana even though we had a stopover in Orlando. Why we had to go all the way south to Florida to then go all the way North again to Indiana is beyond me, but that is what the route was. Anyway… I am now stuck in the airport til 11:00 AM and our flight won’t arrive now til 5:00 tonight. I am definitely going to be suffering tonight because like I said before, as the day progresses, I quickly deteriorate and traveling takes a lot out of me as it is. Therefore, between the traveling, not eating (I can’t eat because we are on a plane and I have to be near a bathroom and such), and the time of day that we are arriving… I can just imagine the state that I am going to be in when we arrive in Indiana…. Especially when I am suffering so much now because I am so very sick and with the weather being the way it is in Indiana, because it is so very cold and I can’t tolerate it since it really makes my illness worse. In addition, what I went through already with security here really made everything worse already, as well as it was even the security’s fault that we ended up missing the plane in the first place.
I know that security is “tight” but come on… have a little decency on someone that is “sick!” Do I look like a “terrorist” or something? I even fly with documentation from doctors about how “sick” I am and with all my records to prove it. I fly with documentation written from doctors that specifically state that I can’t be “touched” because the slightest touch really sends me up the wall and in excruciating pain. This disease is believed to be the result of dysfunction in the central or peripheral nervous systems. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.
My neurological disease really makes me suffer all the time. The CONSTANT PAIN can be described as burning pain as if a red hot poker were inserted into the affected area; as well as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area (this is not always the site of the trauma). The effected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained. This is a hallmark of the disease. Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a light touch, clothing, sheets, even a breeze across the skin on the effected area can cause an extreme amount of pain to the patient. Sounds and vibrations can also increase pain, especially when they are sharp, sudden, and/or deep. Even the softest touch of a loved one can now cause pain instead of comfort.
Many times I get asked what my disease feels like. If they are asking what is RSD pain is like in comparison to other diseases you can give the McGill Pain Index answer; “RSD pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!” It is the most pain I have ever experienced, it hurts constantly.
However, many times people don’t understand how bad I really am suffering because I try to “hide” it. I try and shield them from the depth of my pain. Many times I just say, “I am fine. It is nothing I can’t handle” when I am asked how I am feeling or what the pain is like. Once in a great while I may let them know how truly horrible it is, after all, they see it in my eyes. I also sometimes say “I am fine” because the pain is the same today as it was yesterday, and the day before, and the day before that, and the day after tomorrow… so I try not to dwell on it too much.
But… I guess if you had to really say what my disease feels like, I would have to say that you could imagine your hand doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture.
I also suffer from Allodynia, which is an extreme sensitivity to touch, sound, and/or vibration. Because of the allodynia, any normal touch causes pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. Allodynia can be thought of as someone rubbing some salt on top of that hand that had all the skin burned off and completely raw, and then it had some sandpaper rubbed on top of that.
So… We really try to avoid anything touching me at all costs because it really heightens my disease. My disease not only is notorious for having pain, but for inflammation, spasms, etc. Therefore, security can be a HUGE problem when we travel because I can’t really be touched!!
Well… due to the heightened security at the airport, it made us miss the plane. Even though I get priority with going through the Security due to my illness and a wheelchair, they really made it difficult for me to go through this time and really cost us missing the flight. I bring documentation and records stating about my disease and how I can’t be “touched,” but this security didn’t want to hear of it. In all my life, I never had a problem like I did today. Did I look like a terrorist or something?
We got stuck at security for the longest time and all we kept doing was seeing the clock tick by. We knew that we were going to miss our flight and even though we clearly explained it to them and explained to them the situation, as well as told them about the documentation, they refused to let us pass. We even asked if they could contact the gate, but they refused to do that as well. They were just making it very difficult overall.
First of all… there are 2 machines…. the one that you walk through and is like 12 inches in length and then the HUGE machine that takes like 2 1/2 feet to go through in order to go through the entire machine. With that 2 1/2 walkthrough, they make you stand in the center of the machine for like 30 seconds while they body scan you. Well… I obviously can’t walk and walking huge distances are out of the question. But I do make it though… barely, but I make it through…. the other machine since it is only about 1 foot in length and I can literally bring the wheelchair to the entrance and grab the guys hand on the other side while I shimmy through the scanner since I can’t use the wheelchair or crutches to go through the scanner. Well… first off… the security refused to let me through the easier scanner that I always go through. I don’t know why, but they wouldn’t let me. I know… I look like a terrorist, right?
Anyway… they said that I needed to go through the big scanner and if I couldn’t, then I had to be “patted down” and such, which of course is a BIG NO NO because I am so hypersensitive and in pain. Like I said before…with my disease… nothing can touch me! Even the softest touch is so extremely painful to me. So, since I didn’t want to be patted down and they wouldn’t let me through the easier machine, I had no other choice but to go through the bigger and more intensive scanner. However, of course I couldn’t walk through there myself because I couldn’t bring the wheelchair or crutches with me. So, we told them that my dad would pick me up and put me in so I can stand in there for the 30 seconds while they do the “scan!”
Well… of course that wasn’t good enough for them either. It took so much time arguing with them and explaining to them that my dad would just put me in the scanner and I would then be able to stand alone and such. Finally after all that time… they listened. So my dad picked me up and put me in the scanner so that they scanned me. Well… guess what? Disaster only seemed to continue.
When I got out of the scanner, I was certain that things were going to be ok and the worst was over. After all, I made it through the scanner and how much more could they want from me, right? Well… I was wrong! It turns out that the clothes that I was wearing picked up all these abnormalities on the scanner. My mom and I decided to wear a shirt that happened to have rhinestones on it and everywhere there was a rhinestone, it showed up on the scanner that something “suspicious” was there. So of course they weren’t going to let me go past there.
Time was ticking til the plane was taking off and they said that unless I was “patted down” I was not going to be able to fly. I was like “Are you kidding? I can’t be touched. I have this disease.” I even showed them the documentation and records, but they didn’t care. So of course I had no other choice but for them to touch me. Luckily though it was all above the waist so even though I was sensitive and in tremendous pain, at least it wasn’t below the waist where the pain is escalated a hundred times worse.
Not only did they have to pat me down, but they also took swabs of my hands to make sure I didn’t have chemicals on me. They really put me through the ringer. So, you can just imagine how much they started my disease up because I cannot be touched the slightest thing ignites a raging fire in my body. Anything that even slightly touches me will “start” up my disease and autonomic dysfunction.
When my disease “starts” up, there is no shutting it off. So now I am in so much pain and agony. I can’t stand it. I don’t even know now how I am going to manage sitting on a plane for the next couple of hours. They took so much time downstairs though that by the time we got to the gate, the person at the gate said the “flight was full.” I tried to explain to them how I had to get to Indiana because of health related reasons and because I needed to go to the hospital, but of course they didn’t care. I asked if they could possibly ask if someone could “give up” their seat, but they refused to do that as well. So… now I am stuck here at the airport waiting for the next flight out, which is at 11.
So here we are. Dad and I are sitting in the airport and I am writing to you. I really am nervous about our trip to Indiana. I am nervous about the transplant because I know how very risky and radical this transplant is. After all, only 6 hospitals in the country do it and it has only been done like 35 times last year. The survival rate isn’t too good either. The one-year survival rate is only like 75% and the five-year survival rate from the people surviving one year is only like 50%. So if you think about it… only like 25% of people really make it. They haven’t really done any of the transplants yet without even a serious complication. But… I am hoping that as long as I make it through 1 year, 5 years is a long time off and with medicine always changing and advancing the way it is… hopefully something new and more beneficial will come around.
I have really been thinking lately about what is going on with me. I kinda figured out what is happening. Basically my body is deteriorating and so are all my organs. We know for a fact that my organs and entire body is shutting down. So… I came to the conclusion that my body is just plain worn out and it is time for a “new” one. I kinda came out to believe that you are just a “soul” and all you do is “rent” out a body for a certain amount of time. Well… my time with this current body is used up and now it is time for a new one because I wore it out. Either that… or I need to go in for an overhaul. I need to have a new engine and parts put in for my body to continue to be able to function. Basically my engine is almost caput and I need new parts and a new engine before I officially run out of gas. How do you like my theory?
I am really nervous though because my body is suffering so much and deteriorating so fast. My grandma went through the exact same thing and she died 2 months later. I literally watched her go through the exact same things I am going through and in the same exact order, which really scares me because I know where that led her. Also, this happened to her last year about this time. I am afraid that history is repeating itself… just one year later. I watched my grandma stop being able to hold her bowels, to not being able to swallow, to not being able to walk because her legs wouldn’t move and were collapsing, to not being able to talk, to having the most excruciating pain you can imagine, etc. I am having the exact symptoms. If I knew how bad my grandma really was suffering, especially with taking her medication because she was telling me how difficult it was to swallow, I would never have forced her the way I did. Even though I know that it was for the best for her to have the medication, I know firsthand how difficult and horrible it is to have these swallowing difficulties and how nothing… not even medication… goes down. Even though I was doing my best to keep her alive, I think I was being more selfish because I didn’t want to lose her.
What I did to my grandma about forcing her to do things because I didn’t want her to die, my parents (especially my dad) is doing to me. My dad even admits that he is “selfish” and doesn’t want to lose me even though it would put me out of my pain, misery, and suffering. He doesn’t want me to suffer, but he doesn’t want to lose me either. We all know that if something would happen to me, he would never get over it. He is the main reason that I keep going. I know that if something happened to me… he would never be able to handle it. He already said many times that he would never take care of himself if something happened to me. He said, “when I die, I am going to hear ‘open the gates…big fat man coming up!’ and I am going to know it is him!” My dad constantly bribes me and says whatever he can just so I keep going. I see the pain in his eyes because no matter what he does… he can’t help me.
I am holding on so much for my dad. Even though I don’t know how much longer I can hold on… I am holding on for my dad. Even when I really wanted to sign the DNR (Do Not Resuscitate Order) when I went to California and had the operation, I didn’t because I was just about to sign it and I couldn’t because I saw his eyes and I know he doesn’t want me to. My dad has it planned that if he could have his way, he would have be frozen so that when a cure is found, he could defrost me so that I can live. If nothing else… I want to live and become that doctor so that he can see me become it.
So… here we are on our way to Indiana. Even though we are waiting for the 11 O’clock plane, our luggage should be there already because it went on the flight that we missed.
Even though my records were sent prior, I always bring my records with me. However, I am meeting with the entire transplant team and I wanted to make sure that everyone had a copy. So, you can never be too prepared. So I ended up printing out a copy for everyone to have. I didn’t realize how many pages it would be. Thank goodness I bought another ream of paper because I basically went through an entire pack. It was so heavy that I ended up packing half below the plane and carrying half. I usually bring them aboard the plane because I am always afraid of them getting “lost,” but there was no way we could carry them all. They were just way too heavy. We figured that the worse that happens… we have half of them and they can make copies.
I also received some lovely gifts from people before I left. I was definitely not expecting it. It was seriously the nicest thing that was ever done for me. I got a lovely cake that looked simply delicious. I did try to have a piece, but due to my swallowing difficulties… it wasn’t very productive and didn’t go too well. So… I figured that when I get better and I have that transplant, I am going to have one HUGE party and have cakes and everything for everyone. I am going to invite everyone I know and we are all going to celebrate. I am going to eat all the cakes in the world and enjoy them. But it was a wonderful thought to just have the cake and see it. My dad especially loved the cake because of course he had it!!
I also received a beautiful book and bracelet from an old friend. I certainly wasn’t expecting it. Just what she wrote in the card was so very touching. It is getting harder and harder to function and to pull through… but knowing people care like this about me… it really helps. It is because of people like this that make me continue on!!
I am also really nervous because I know that after this, the next step is the actual transplant. I am meeting with the whole entire transplant team this week and finalizing everything so all the t’s are crossed and I’s dotted. After all, you can’t imagine what goes into getting a transplant. You have to have every test, evaluation, clearance there is from head to toe… even if it doesn’t pertain to the actual transplant. I have to have everything from psych clearance to cardiac clearance to dental clearance to gynecological clearance (pap smear and mammography), etc. It’s unbelievable.
However, when I was going through my records to bring last night, I realized I forgot to get one of my clearances signed. I forgot to get part of the dental clearance signed. But thank goodness for Facebook and the computer because I was able to send it to him and he was able to fax it over to the hospital. I am just hoping that it is good enough for them and they don’t want the originals right away.
Even though Indiana has a good turnaround rate for transplant, it can take long to get organs. That is why some people die waiting. I need a small and large intestine, stomach, pancreas, and liver. It all has to come from the same person. I kinda feel bad hoping that someone dies so that I can life, but what else can I do? I guess that is the way it goes, right?
I am listed as Status 1, which means that I get priority. But that doesn’t mean anything because it can still take long. It can also take a day or so. I guess you never know until that phone call comes in. I am just scared because I still don’t know how I am going to get there when I get the call because that alone is going to cost me $13,000. They usually want their patients to live within 4 hrs. of the hospital, but they are making an exception for me because it would be too much of a hardship for me to do that. My dad has the business and for him to not work pre-transplant and not have an income… not only would the business not survive, but we probably wouldn’t survive either. Even with him working now, we are barely surviving. We are having a difficult time paying all our bills, paying our mortgage, even putting food on our table. Our bills and my medical costs are just astronomical. That is why I am so desperate for support from others because we can’t afford it anymore on our own. The costs have just become too great and unfortunately without the money… I can’t receive the necessary treatment that I need to survive. I hate to be a “crier” or a “beggar” but I have no other choice.
What kills me is that I have tried so many different ways to raise money and such, and nothing really has worked. They worked to some extent, but nothing really major. I have posted flyers, made websites, tried contacting the media and famous people (even the President and Queen Elizabeth because I was so desperate), etc. and nothing has come about. However, I see other stories in the media and such that are featured and I can’t get the attention that I desperately need. I know its probably “not what you know, its who you know!’ I found a quote from Benjamin Franklin that that really is a great quote for the world. He said, “It is only when the rich are sick that they fully feel the impotence of wealth!” I really desperately need help and no matter how hard I try, I can’t receive it. Even last night… I saw people asking for help or attention on their diseases and disabilities on 20/20. I certainly wished that I was able to get on a show like that. But to be honest… I have tried so much in the past and it is at the point that I am so tired and worn out from being sick that I really need someone to “takeover” the reins from me. I can’t really do it anymore!!
Well… I better be going because we are getting ready to board. I rented a movie last night and put it on my iPad called TAKEN 2. However, during our delay here, I went to watch it and there was something wrong with the iPad and as a result, I had to reset my entire iPad. That meant I had to download the movie again too. I am using the Wi-Fi connection from my phone and it isn’t so fast. Therefore, I doubt it is going to make it onto the iPad for this trip to Indiana. I guess it will have to wait for the return trip home. Like I said before… disaster happens to strike wherever I go. They should change MURPHY’S LAW to MIRSKY’S LAW.
I will keep you posted on everything that is happening. If you can please spread the word though that help is needed in terms of both financial support and prayers, I would really appreciate it. Anything that you can do… is much appreciated. Thanks again for always being there to listen!! Talk to you in Indiana.
P.S. One bad thing about missing the first plane is that I missed out on going to Florida and being in the warm weather for a little bit even though I would be in the airport. Now I am just going to be stuck in ESKIMO weather!! I made dad bring his scarf and not dress like summertime like he always does because it is only like a high of 15 degrees. We are going to FREEZE.