I just wanted to write a little because I am not having a good nite and this time next week I will hopefully be in my new residence for awhile. I will hopefully be in Maryland getting ready to check into John Hopkins Hospital in the morning for the scariest of all my days. I have some really big scary surgeries coming up and those days are going to be really fearful. I really honestly don’t know if I can do it. But… I know I don’t have any other option. So…. This time next week I will be at the hotel in Maryland probably scared beyond belief (because I am close to that now) and getting ready for the big check in the very next day at the hospital, which I will be staying at for a period of at least 2 weeks or so in the ICU.
I have been following the IRONMAN competition at Lake Placid that has taken place today and I have seen how people have tested their bodies and competed in ways that really put the body to the ultimate! IRONMAN Lake Placid is the longest-running American event aside from the IRONMAN World Championship Kailua-Kona, Hawaii. I got to see how more than 2,500 athletes from 19 different countries undertook about 140 miles in order to conquer a course that basically tested the human body to the ultimate. Competitors will begin with a grueling 2.4-mile swim through Mirror Lake. After covering more than two miles in the water, athletes will take to the bike for the second stage, a 112-mile bike ride that will feature a demanding climb through the Adirondack Mountains. The final stage will see the competitors run two loops around Lake Placid, covering 26.2 miles in the process. It is a race that I never saw before and something that really tests the strength of the human body. When the starting shot went off at 6:20 in the morning, I never thought that the race was going to impact me the way it was going to.
I can’t believe how this race made such an impact on me because it didn’t matter if a person was an athlete or not or what time he finished… all that it mattered was that they finished. I saw people do whatever they can to make sure that they completed this most strenuous test of the human body and even though they knew they wouldn’t “win” or even come close to it, they still did whatever they could to complete it. Even though the starting shot went off at 6:20 AM and the first runner crossed the finish line about 13 hours later, you should have seen the crowd outside at the finish line cheering the competitors on at midnight still, as it was still as bigger as ever and the cheering was as loud as ever. It didn’t matter that it took over 15 hours to complete the course; they celebrated as if they were the first ones to cross the finish line. I saw all sought of people cross the finish line… athletes in tip top shape, older people, younger people, etc. People in all different looks and conditions did whatever they could to complete the race. I was recently brought to the attention of a famous quote by Dean Karnazes- “Run when you can, walk if you have to, crawl if you must, Just never give up!” NO matter what the toll it took on their body… they did whatever they could to finish the race. This showed me that no matter what should happen to me or no matter how difficult the race might be for me to get ‘well’, I should never stop fighting. I am so thankful that just like the athletes had so many supporters rooting them on that gave them the strength to continue on to finish the race, I am lucky to have the support from others to help me overcome my own race to hopefully get better. I may not be racing in a triathlon right now, but I am in a huge race right now… the biggest race of my them all… the race for my life!!
I would definitely love to do something like this. A friend once told me that “God gives his toughest battles to his strongest warriors.” I am running my own IRONMAN race with my illness. But, I haven’t crossed the finish line yet. I have added to my bucket list though that if I get better I saw that this is something that I really want to accomplish. I would do anything to be able to race in something like this. I would love to show that I am capable and able to complete endure yet another challenge and I am strong, but I want to run to bring awareness to my story so as to show all that I overcame and to show others what they can do if they “Don’t give up!” That is why when the seas look all murky and full of sharks, I just keep swimming.
I really want to leave my mark on the world before I leave. I want to leave my stamp that says I was there. But I do know how much this illness has robbed and taken from me. But one thing it hasn’t taken from me is my dignity and strength. It may have weakened me severely, but it hasn’t knocked me down completely. I may never get to find a “cure” for this disease, but at least I can bring hope and awareness to others about this illness and maybe others won’t have to necessarily go through what I am going through. I can give others, like me “hope” that they can overcome anything that they put their mind to! I just hope that I get my chance because not only do I want to get this time to prove myself to my not only myself, but to inspire others, but it will also be a great achievement because being able to ‘run’ would be amazing. It would make me feel as ‘free’ as a bird and it would be the biggest gift and reward I could ever have. I want to be the next ironman!
But I know that just like training for an ironman competition takes time and plenty of practice and training because you can’t just go into it, I have to constantly train and prepare for WAR against this disease. All these little things that I have undergone have been ‘battles’ that may have gotten me down and I may have lost. However, the war is not over and I am going in for the ‘kill!’ Hopefully with this trip to Maryland, I will be able to report that a war was won, or if not… at least a battle!
I am extremely nervous about going to Maryland and John Hopkins Hospital. I have never been so scared in my life. If this blog is a little rambled and out of sort, please bare with me because I am not doing so well and under ketamine. I just really wanted to get this blog out because I wanted to let you know my feelings of what has been happening and also of the upcoming plans.
We are supposed to be leaving in 1 week and there is so much to do. I am extremely nervous because this is going to be so hard on me. I am so afraid of not just the surgeries, but I am afraid of the outcomes as well.
I will not just be undergoing one hard surgery when I go to Maryland. Instead, I have ahead of me a set of multiple hard surgeries. They want to put tubes in me to feed me that will go through my entire GI system (pass through my entire GI tract and go low enough into the intestines to hopefully find a portion that might still be viable), they want to put tubes in me to ‘vent’ me (I cannot pass gas and therefore I get severe gas buildup and distension. I walk around like I am 9 months pregnant and ready to give birth. The pressure from the air is causing many problems such as causing my organs including my heart to shut down), they want to give me a procedure where they are going to stop my heart and then have to restart it using the paddles (it is an attempt to help ‘reboot’ my GI system using special medications. Even though it won’t ‘cure’ me, they are hoping that things might improve), they are planning on removing a twist in the colon or obstruction and it might end up in having to get an ileostomy, do surgery to ‘unload’ me because I am completely stuffed up with stool and despite any attempt with laxative and enemas… nothing works because my GI tract is too paralyzed, and finally they are going to be giving me ketamine around the clock. I am extremely scared because I don’t know if I can survive this because there is only so much the human body can endure, but I really don’t want to come back with being the ‘artificial’ person.
I am so afraid that I am going to come back with bags and tubes. I know it will mean that I am still alive, but I don’t know if I would call it a ‘way’ of life. I don’t honestly know how I would be able to handle this if it should occur. I really don’t want a bag under any circumstances. I don’t want to come back feeling not ‘normal’. The only thing I have left is my dignity and I don’t want to lose that. If I were to get the tubes, I will never be able to eat again. To spend the rest of my life never eating, it is definitely not a life to live.
I don’t know what kind of life I would be able to have when I wouldn’t be able to eat ever again. Yes I know ‘eating’ isn’t everything, but how would you feel if you could never eat or drink again? Not only would I always be hungry and suffer from hunger pains because the only reason a person really feels ‘full’ is because they put food in their mouths and chew it, swallow it, and it registers in their brain through this and by having it in their stomach, but I am so afraid that people would not want to go out with me or spend time with me socializing because they are not going to want me just ‘watching’ them eat. I know many people that would have issues having me just watch them eat because they would feel so uncomfortable. I mean I guess it is just normal.
So in the meantime, I am preparing myself just in case I won’t be able to eat ever again. I have been trying to eat anything and everything in the last few days before I leave. Even though I can’t really swallow and eat anything, I am still trying because I don’t want to say I should have tried or had. At least I can say I did ‘try’ it. You know? So… even though I have even getting down the very few things and can basically get down ices, egg whites, and ice cream, if anything, I still have been trying other foods because I don’t want to feel like I ‘missed’ out on anything. So I have been trying to get down McDonalds, pizza, some yummy desserts, etc. It really has been a ‘lost’ cause… but at least I can say, “I tried!”
I really don’t want to have the bags and tubes. I really don’t want to feel like I am ‘not human.’ I really don’t want to not ever eat again. I don’t want to have artificial means to feed me and for ways to get things out of me. It just isn’t a way to live. I already told everyone that if I was to get the bags and the tubes, they better have the transplant ready for me the very next day. I need a very rare, radical, and risky multivisceral organ transplant and incorporates getting a new stomach, small and large intestine, liver and pancreas. It is extremely dangerous and rare, as only 6 hospitals in the country do it. It is the hardest transplant to endure and recover even for a normal patient. The doctors said that if I would undergo it now, I would never survive it. They said that I have deteriorated way too much at this point to undergo it. Therefore, they want to try to ‘buy’ me time and ‘build’ me up through these surgeries and procedures that I am having done at Hopkins during this time.
I am also really nervous about having these surgeries because they are really dangerous and I am in no way in the best condition to have surgery. I have really deteriorated a lot and only weigh in the 60s. I really don’t even have the ‘reserves’ to recover. I am not even undergoing something ‘simple’ or just ‘one’ procedure either. Just being in the hospital itself is extremely a huge risk for me. I have no immune system and I am extremely hypersensitive. Anything that I catch is magnified for me. Therefore, a simple cold or infection is like catching the Flu or Pneumonia and can be extremely life threatening for me. In addition, since I suffer from a neurological disease that spreads through ‘trauma’ any traumatic experience whether it is a needlestick or surgery can potentially spread my illness. So I have HUGE tasks ahead of me.
I am so scared that I will not make it through because of all that is going to happen. I am scared too because I won’t have my mom with me. Even though I will have my dad with me, I would still love to have my mom with me too. I only wish my mom could be with me too because not only would it be a great comfort to know I have BOTH parents, but I would love to be able to be with her when she celebrates her big 60th birthday. However, even though I won’t have my mom in person there, I will definitely be speaking to her constantly through the phone and speaking to her through Facetime. Thank goodness for technology. I am also going to bring FALBEAR2, which is the bear that she bought me, so I will have it to cuddle with and to remind me of her. But of course none of that stuff takes the place of her actually being there with me!
I feel so bad because I will be missing her birthday. I have tried so much to arrange it away from her birthday, but unfortunately, it cannot happen. It is bad enough to miss any birthday, but to miss a major birthday like that… it really bothers me. I am really scared too because in my family we have a record of people dying on birthdays. For example, my grandpa died on my uncle’s birthday, and my grandma died in my arms on my brother’s birthday. I am so afraid that something is going to happen to me on my mom’s birthday, especially since the cards are already against me and when I am undergoing so many dangerous surgeries already.
I really want to make my mom’s birthday special for her. Even though I won’t be here for it, I really want her day to be special. I don’t know exactly what to get her, but if you have any ideas… I would appreciate any ideas. I want to get her something really special especially since it is the big 60. She really deserves something BIG especially with all that she has put up with and since she is the most amazing mom you can imagine. She has literally given up her life for me.
These past 8 years have not just taken a toll on me, but on my entire family. My mom has literally given up everything for me! Due to the financial strain of my illness, we haven’t been on a family vacation since and we really don’t do anything ‘fun’ such as spending the day out. We are so in over our heads with the expenses that we really can’t afford anything. My mom would love to go to a Broadway show or even just spend the day doing something, but unfortunately due to the expenses that we have, we cannot afford it. Therefore, we haven’t had the pleasure of doing anything like that in the longest time and we basically have sat home for the last 8 years. Due to the financial strain, my mom also has not been able to decorate or redo her house like she would want. She literally has had to give up on everything that she wanted to do in life. Even going out to eat has been put on hold. Between me being so sick and unable to go out to do these things compiled by the finances, my mom’s life has dwindled down to just working 6 days a week and spending the rest of the time within the 4 walls of the house. She is at the point in her life where she should be enjoying herself. Instead… she continues to suffer in order to help provide for me and help get me as much treatment even that isn’t a lot because the amount of treatment I need can’t be obtained without the help of others. So I just want her day to be special and to treat her special because she deserves it. She never treats herself… this should be one day that she is treated well!
I am only hoping that what happens at HOPKINS works because I can’t take it much longer. I am suffering so much and I don’t honestly know how much longer I can take it. I had a ketamine coma/infusion on Friday and I even begged the doctor to please do something more to relieve my suffering even though we have been doing so much already and basically there is nothing left to do. I already take over 50 meds daily, have had multiple surgeries, had sympathetcomies, machines put in, etc.
No matter al that I have had in the past and all that I am having now… it just doesn’t seem like it is cutting it anymore. The only true miracle drug I have is the ketamine and thankfully they have started it at home besides getting the ketamine coma/infusions. However, the part that stinks is that it is so short-lived, as it only lasts 45 minutes, but that 45 minutes is the BEST 45 minutes of my life. I just can’t withstand the pain anymore.
I have been begging my dad to take me to Oregon or to Jersey because they have Physician Assisted Suicide and I really really really can’t take it anymore. I am seriously on my wits end with this illness. I have been through a lot with this illness and have always hung in there… but I honestly can’t take it anymore. The pain is astronomical already and unbearable. It is constant and I just can’t withstand it anymore. It is definitely not a life to live. I am so scared about having to live more days like this because I will NEVER make it. I can’t even do anything anymore. I basically stay in the house 24 hours a day because I am so weak and in pain. I can’t sleep with a blanket and not only that… but I am basically naked all throughout the day and night because even the slightest touch is driving me up the wall.
I constantly hurt from the surface of my skin to deep down into the cores of my bone. It is the most painful thing that you can imagine. I constantly feel like I am on fire. I feel like I am being doused all the time with gasoline, and then lit on fire. Then I am sandpapered and have salt poured all over my wounds. It is so painful and no matter what I do… nothing cuts it. The ketamine helps to a point… but it is so short. Like I said before… It only helps like 45 minutes a day and that is like nothing in the whole realm of things (even though that is the best 45 minutes of my life).
Anyway… since I can’t take it anymore… I have found out that they have this Physician Assisted Suicide in like 4 states in the United States. If people can put their animals to “sleep” so that they don’t have to bare the suffering and pain and such, why can’t they do it to humans, you know? I think I deserve the same thing… you know? I don’t want to suffer. So… the only 4 states to do it is Jersey, Oregon, Washington, and Montana and therefore, I have been begging dad to take me there. It is so peaceful because all you have to do is drink this cocktail and you fall asleep. But guess what? My dad is so selfish and of course won’t hear of it. He rather me suffer and be here than me be at peace. I can’t blame him because I know how important I am to him, but at times I wish he would see it from my point of view. I really don’t want to leave him either, but I am just suffering way too much. People say that if something would happen to me, my dad would never recover! I totally agree with them and that is what I am scared of. That is another reason why I am also scared of something happening to me in Maryland because he is going to be there all by himself without any support whatsoever.
Anyway… I am suffering so much and had to go to the doctor today. So guess what? I even told my doctor all this and how much I am suffering. I told him how I so wanted this done because I can’t take it any longer. So you know what he said? He said… “It isn’t your time… we aren’t ready to let you go. It isn’t for you.” Can you believe that? My dad started to love my doctor even more because this doctor was ‘selfish’ too. He rather keep me here suffering than to let me go peacefully and put me out of my misery. I know they love having me around… but enough is honestly enough. You know?
Well… Like I said before this week is going to be filled with lots of appointments. I have an appointment with numerous doctors including the surgeon for the osteonecrosis. I have a feeling that it has worsened, as I can feel more bone protruding and it is getting more painful.
With so much going on, there just isn’t enough time in the day. My endocrinologist wanted me to come into the hospital to start a new set of injections on top of all the other injections and medications that I take. My bones are really bad and since I can’t get that powerful infusion anymore that is supposed to ‘build’ bone because of the infusion, they want to start me on these injections that are not as potent as the infusion, but will still be better than nothing. But unfortunately the doctor doesn’t want me to start them on my own at home and I need to start them in the hospital. I just don’t know what is going to happen because there just isn’t enough time to do everything before we go and I definitely need to start these shots. But I have a feeling that these shots are going to have to wait because there is only so much that we can do and dad also has to work because he is going to be missing so much work when we go to HOPKINS. So I can’t blame him for saying that he can’t take me.
I don’t know what is going to happen when dad goes with me and takes me to Hopkins. I don’t know how we are going to afford everything. The bills are just piled up way so high and we can barely afford the mortgage and everything else. It is a shame that my life and treatment depends on the green paper. You know?
Even though my parents would love to give me all the treatments in the world, they just can’t. Unfortunately, we can’t afford it and without the help of others… there is no way we are going to be able to obtain it. I am so scared about how we are going to afford even the treatments that I am undergoing now especially when dad won’t be working all that time when we go to HOPKINS. With dad not working, there is no income coming into the family and the business is also suffering. I am so fearful that something is going to happen to the business because my dad isn’t there to do the work and people aren’t going to want to wait around for him to return. I know he is going to lose so much work when we leave. I would never forgive myself if something would happen to the business.
That is why I beg for help from others. I hate to sound like a ‘beggar’ or a ‘crier’ but the fact of the matter is that without your help… there is no way that I will be able to obtain the necessary treatment that I need in order to try to save my life. I really don’t want to die and unfortunately we can’t afford it by ourselves. Like I have said in the past, I have done numerous things to try to raise money, but they haven’t really been productive. If anyone can please help me out and please spread the awareness of my website and illness, I would really appreciate it. I know the secret probably would be getting the attention of the media, but unfortunately it isn’t ‘what’ you know it matters ‘who’ you know and I don’t know anyone. I don’t have any ‘connections’ with anyone in the media industry so I am all out of luck in that aspect. So… I really hope that you can help me out because my life depends on it.
At the very least, I really hope that you will continue to pray for me. The road has been really hard especially lately. But knowing that I have your support really helps me overcome all those bumps. In addition, prayers are very powerful in helping the sick and perhaps maybe through the course of prayers… I can be helped. It is worth a shot, right? We have nothing to lose!!
Well… Going to get going because have bloods in the morning. I hope that they don’t drop even more because I can’t afford it. They are low enough already and my heart is really suffering. Just wanted to write a little and let you know all that is happening. I am getting some things prepared for my trip. Planning on taking some good books with me to keep me busy, as well as some good movies. However, there really haven’t been any good movies that have been released on DVD lately. Any ideas of some good ones? I also want to redo my music playlist because at least I will have some good music to listen to. If you have any suggestions of any good books, music, videos, etc. to bring… feel free to let me know.
Well… talk to you soon!
P.S. One more HUGE reason I don’t want to go to HOPKINS is my animals. I don’t want to leave them, as they are my BEST Friends ever!