Just wanted to update you on all that is happening because I am hopefully again on my way out of here and onto California in 2 days. Yup… leaving again! Dad and I are jet setting!! I really hate going because I know the traveling will be really tough on me. I still haven’t recuperated from the last trip to Indiana. But my life is like a soap opera… never a dull moment.
I have really been deteriorating and getting worse and worse. The pain has been so intense lately that I can’t do anything but scream and cry all throughout the day. I am in pain from head to toe… from the very tips of my fingertips to the very tips of my toes. I am in pain from the very top surface of my skin down to the inner core of all my bones in my body. The pain is so excruciating and intense. I don’t even know how to describe it anymore. The pain is horrific. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. The “best” I can hope for is a dull ache that can last during periods of an attack of extreme suffering.
I have also lately been suffering from involuntarily jerks. You know when you have a dream and you feel like you are falling and you jerk because of that sensation of falling? Well… I keep doing that as I suffer in agony. I am getting worse and worse and nothing that I do helps the situation. There is no medication out there at alleviates the pain. I am maxing out on all the meds that I have, and it isn’t like I am only on one medication. I take so many meds that it could probably kill a horse if they took it. I take methadone, morphine, dilaudid, nucynta, etc. The doctors have even raised my meds and even put me on an additional meds including lidocaine patches and Opana (like oxycodone), but that isn’t even hoping. The most I can hope for is that the meds just knock me out. At least when I am out, I am not suffering as much… but that rarely happens!
The pain has been so intense that all I can do is scream and cry all day and night long. Fortunately, I have one amazing dad that always comes to my rescue. He has been with me throughout this entire journey and I don’t know what I would do without him. He has not really been getting any rest or sleeps lately either. Besides working like a horse because he is trying to bring in whatever money he can, especially when he knows he will be leaving to go to California, he has been spending countless nights awake with me trying to take care of me. I am definitely not an “Easy” person to take care of. My dad constantly says that he “wishes that he could do something to help me,” but unfortunately there is nothing that he can do.
I am in so much pain that I tell my dad to just KNOCK ME OUT!! I tell him to just take his best shot and KNOCK ME OUT. He should think of me as a “punching bag” and just give me one good swing. My dad said that he would “never hurt me” but I told him “not to worry.” I told him that to think of me as a punching bag because punching bags always bounce back. Therefore, even if he takes a good whack at me, I will always come back!! So he shouldn’t be afraid of hurting me because nothing keeps a punching bag down forever.
I have been deteriorating so much that I can’t even stand anymore. Even getting up and down off the couch is getting to be impossible. My dad literally has to carry me around places because I am too weak and in too much pain to walk by myself. Usually in the past I stay home alone for a while since my parents do work. It is only for a couple of hours, and I can usually fend for myself for a limited amount of time. However, with everything progressing and me getting so much worse, I haven’t really been able to be left alone. My dad has been by my side all the time because I can’t do anything. Plus, with the jerking around that is happening, my parents don’t like to leave me alone.
In addition, my body is just shutting down. My organs have just had enough. I also have extreme pressure being exerted on my organs and causing a lot of problems and shutting them down because of the gastroparesis. I am getting so weak and staying alive is getting to be such a chore. It really is starting to be impossible to even make it through the day or even night with all that is happening to me. That is yet another reason why my parents have not left my side. In case something should happen, at least they are close.
There have been so many close calls that we would have to go to HOPKINS. I really belong in a hospital. I have to admit that I am too sick to really remain at home. Not only am I suffering in pain, but my body is also shutting down. I can’t even take my medications anymore because I am having such a hard time swallowing. Even with the carbonation that I discovered helped to a point to get down my meds, it will not allow anything to go down anymore. Even the limited foods that I was eating before because they were the only things I could swallow even though I vomited them back up and they didn’t pass through my GI system and weren’t absorbed are not even going down anymore. Before I could only tolerate foods that were NOT carbs. I was living basically on egg whites and ice-cream (to a point), but now that is starting to be impossible to take in. To think… I used to love ice-cream too. There wasn’t a day that could go by that I could bypass having it. My dad and I would have to have our ice-cream every night for dessert together. It was something we looked forward to. However, now my dad has his ice-cream alone as I watch. One day hopefully that will change.
I have also medicated ice pops to eat. Who would think that out of all things that I wouldn’t be able to tolerate these ice pops? I guess you know things are definitely bad when you can’t tolerate eating the pops. It is important too that I get these pops in because they have the meds for my heart. I can’t really take my pills and such, so at least some of the meds are in the pops and gets immediately absorbed through my mouth. My heart is definitely doing horrible and I can’t afford for it to worsen anymore. My bloods already show that my heart can easily go into cardiac arrest and an arrhythmia. If they dropped any more… I don’t even want to imagine or say what can happen.
I have also been aspirating like crazy. This is definitely not a good thing because it is giving me additional problems with breathing. Plus, the aspirations can develop into pneumonia. With the FLU and other illness going around, even getting a simple cold can severely hurt me because a simple cold is like getting the flu to me. Everything is magnified. However, with the aspirations, it can also make me more susceptible to getting sick and if I do get sick… it can make it a lot worse. After all, I already don’t have an immune system… so all bets are off as to what can happen.
The bleeding internally and mucous coming out of me is also worsening. Unfortunately, we don’t know where that is coming from because even though the doctors have tried to find out, they are unable to because the one procedure that is needed to actually determine where it is from, they can’t do. They have narrowed it down to my intestines, but in order to further determine where the bleeding and mucous is occurring, I would need a colonoscopy. Yet, with my paralyzed GI tract, they can’t prep me for it. No matter what type of prep they have used, it won’t “clear” me out. They have even tried putting a nasogastric tube in me and pouring laxatives in me so I won’t have to swallow it and the tube would pass the laxatives right into my small intestines. However, we only got in less than a ¼ of a liter and the tube backed up since my GI tract is basically dead. They had to end up pulling the tube out and that was that.
I am so very thirsty and nothing quenches my thirst. However, I can’t drink because the more I drink, the more I suffer. I can’t sweat either because of my autonomic dysfunction and therefore, I am even driver than ever. I have been trying to put lotion on my hands so that I can have some type of moisture in me, but it really isn’t working.
I have been getting the worst stomach pains in the world. They are so debilitating that all I can do is lay on the couch all curled up. My stomach feels like there are thumbtacks in it and that it is inelastic. It doesn’t feel like it can expand at all. Therefore, the more I drink, the worse it feels. So I am between a rock and a hard plate.
To make matters worse, I have lost weight and my BMI has dropped. I don’t know if it is TRUE weight or if it is that I am just so dehydrated because I am bleeding and having so much mucous coming out of me, but losing ANY weight whatsoever is definitely not a good thing, especially when I don’t have weight to lose. It is really scaring me because I am getting closer and closer to the 50s. Who would think someone that is 30 years old would weigh that little? I didn’t even think it was possible. My BMI is also dropping and when we checked it, it was only 11.7 roughly. It really freaks me out and the doctors are freaking out because basically I am on “death row.” If I was a male, I would certainly be dead by now because males cannot live whatsoever below a BMI less than 13. Females can live a little bit lower til 12, but even so… mine is lower than that. I really am in borrowed time!!
So with everything that is happening and how weak I am feeling overall, my dad has been wanting to take me to HOPKINS. I really need to be in a hospital, but unfortunately with my disease it is easier said than done because I can’t just go to ANY hospital. I am so complex and complicated that I need top specialists because not a lot of doctors have even seen what I have. When I go to the hospital, I am like on “show” because so many doctors, nurses, residents, etc. come in to see because I am one case they will never see again. I suffer from illnesses that are rarely seen and symptoms that I have are unbelievable. I change colors like a chameleon and have other symptoms that the doctors themselves don’t even know why they are occurring. There are plenty of times the doctors are literally running out of my room and around the hospital with their feet not even touching the ground because they are scared. My dad always says to them “Do we look nervous.” But they say and admit that they “never saw this before.” I am one case that they never forget when they see and I am one doctor’s worse nightmare.
Not only am I difficult case to treat, but I am a difficult case to handle as well in terms of nurses too. I need TOP CARE and even though most hospitals give adequate care, I need hospitals that have more of a 1 to 1 nurse ratio because I need around the clock care and constant meds and such. Therefore, the only hospital that can possibly help me in all realms besides California is HOPKINS. I really should be going to Stanford in California, but of course that is a distance away. My doctors always told me that in an emergency to go to HOPKINS because that is the best hospital that is closest to me. Their mentors have gone there to work as well, so they feel comfortable sending me there. In addition, they have a heliport there, so I can get there in an emergency.
So there have been plenty of days and nights that we have debated leaving for HOPKINS because things have gotten so bad. However, we also know that if we went there, it would cost more money… money that we don’t have. I know there is no price for my health, but I don’t want my parents to suffer anymore than they already do. Plus, we need all the money we have for other things like my treatment and for California (not that we even have enough for that). It is a shame that my health and treatment depends so much on money and when it comes down to it… it will be the factor that really kills me in the end because I can’t receive the necessary care that I need because I don’t have the ability to AFFORD it. That is why I am so desperate for support and donations.
My family has been paying for my illness for so long that it was only a matter of time til the ‘well’ ran dry. This illness is so costly, as there is so much money being spent on surgeries, treatments, hospitals, doctors, medications, copayments, etc. Just in copayments alone, we spend like $25,000 and that is with the insurance paying. I still have all the medications and doctors that aren’t covered by insurance. I also have the cost of traveling expenses too since I can’t really get the necessary care that I need in New York. It is a shame that I can’t have a procedure done or go to a hospital because we can’t afford it. People say that I should just go to the hospital and have them “bill me.” Yeah that might work, but we are already in so much debt that we are never going to get out!! I don’t want my family to lose everything that they have because they have already given up so much for me. They have given up their lives basically for me. Not only have I been suffering throughout this illness, but they have too!! It is at the point that we don’t even have money anymore to pay for the mortgage or to put food on the table. It is getting impossible to pay for anything. So… if there is any way to receive support or donations, I would appreciate it.
Not only have we not gone to HOPKINS because of the money factor though, we were hoping to hold out because we are supposed to be leaving for California on Sunday and if I went to HOPKINS, I wouldn’t be able to go to California. When push comes to shove, the best place for me is California, so we are hoping that I will just make it until then.
I guess you have heard enough about the “suffering,” I guess I will tell you about the upcoming plans. Well… as I have said… dad and I are jet setting to Cali on Sunday. I am actually kinda excited because it is going to be Superbowl Sunday and the San Francisco 49ers are in the Superbowl. What better place to be at then in San Francisco since it is their home team? Even though the game isn’t being played in their city, I am sure that it is going to be really “chaotic” with parties and everything. I don’t know how dad and I are going to eat that day because we usually eat in the bar area and they are usually big on sports as it is. With it being the Superbowl and having the 49ers as the team in it, I am sure it is really going to be bouncing and packed. I told dad that we can “skip” having dinner, but dad said “NO WAY… not in your condition. If it was just me… then I would say OK, but definitely not you! You can’t afford to lose an ounce!” I am not a football fan and I honestly don’t know what is going on, but at least I will have my dad to explain the game to me. Every time we watch football (Which is basically only once a year and on Superbowl Sunday), my dad has to explain the game to me because I totally don’t remember from the year before what is going on.
I am headed to California only for a brief period this time to take care of the loose ends and make sure everything is taken care of for the next trip. At least I will be home by Thursday because my birthday is then. The best gift I can ever receive this year is a miracle that I am all better. But since I know that is most likely not possible, I am at least hoping that I receive some support and donations from people so that I can receive the necessary treatment to try to keep me alive. I am suffering from a rare neurological disease/autonomic dysfunction and severe Acute Intestinal Pseudo Obstruction, which are life-threatening and have robbed me of everything people take for granted (walking, eating, having a career/going to school, sleeping with blankets, being touched because it is too painful, etc.). It has been a long and difficult battle, and I need very expensive treatment including surgeries, medication, ketamine comas, even a transplant (small and large intestine, stomach, liver, pancreas), which we can no longer afford.
Like I said though, we are headed to California because we have to meet with my “team!” It is a shame that they aren’t closer because it takes a HUGE toll on me with all the traveling. Anyway, I am meeting with my head GI doc and with the ketamine team. I am also probably meeting with the transplant team as well. California is the only place that is able to do the transplant and willing to do the transplant, but their hands are tied because the insurance refuses to pay for it there. Instead, the insurance will only pay for it in Indiana UNLESS I am denied. However, Indiana is really messing around with me and even though they literally denied me and told me to “go home to die,” they won’t put that on paper because they don’t want another hospital doing the operation and getting credit for it. Lets face it… whoever does the operation and cures me… they will become famous! They don’t want to be the ones that lose out.
Indiana had me go all the way there for them to deny me. They didn’t even touch me, but they said that I am so complicated and the worst case they have ever seen. They literally freaked out when they saw me. They didn’t do absolutely anything. They didn’t even weigh me or take my blood pressure. All they did do was sit around a table and say to me that I was “too sick” and I should “go home to die.”
However, I needed a letter stating that they denied me so that the California could do the surgery instead. However, when I asked Indiana for the letter, they gave me a letter stating that I was not a candidate for transplant at this time and if I “resolved” the issue, they would operate. Therefore, they didn’t officially DENY me according to this letter. However, the issue that they want me to ‘resolve’ is an impossible issue and an issue that if I could resolve, I wouldn’t need the transplant. They want me to gain up to 95 lbs. before I have the surgery. My team of doctors literally think that is hysterical because if I could gain weight and if I could weigh 95 lbs., I wouldn’t’ need the transplant in the first place. So what Indiana is asking for is basically an impossible task because it definitely won’t happen without a transplant. However, because they won’t officially DENY me, I can’t receive the transplant somewhere else. My doctors in California are LIVID!!
Anyway… I am going to California and we are going to discuss our options. I definitely need to be put into an intensive ketamine coma to try to buy time. They are going to put tubes in me during this time because they are going to try to ‘feed me’ and strengthen me. Hopefully since I will be in a ‘coma’ and my body will be kinda ‘dead’ in a way… my body won’t be able to reject anything. It is extremely risky and it will take at least about 2 weeks to undergo. If nothing else, I will get some rest.
During this high intensive ketamine coma that they will put me under to try to buy time, they are going to try to give me enough ketamine to try to reverse some of the neurological disease and autonomic dysfunction. Ideally, I need to go out of the country because the amount of ketamine that I need is way too much than is FDA approved. However, it is very costly and it is extremely dangerous too. It is another procedure that will cost me $100,000 and will not be covered by the insurance. I can’t even afford the transplant; there is no way I can afford this. So, they are hoping that the more intensive ketamine coma will help at the very least because ketamine is an NMDA receptor and in a high enough dose it can literally “cure” me of the autonomic dysfunction and neurological disease. Like I said though, that won’t happen in California, but hopefully it will stop or slow the disease progression and possibly even reverse it a bit. If nothing else, at least I will get 2 weeks at least of rest and not feeling pain. I would do anything for that.
Finally, I am meeting with the transplant team. Like I said before though, they want to do the transplant… they just have their hands tied. They know how desperately I need it, but what can they do. They are hoping to figure something out so I can get the transplant.
They also want to get me as strong as possible because this operation for transplant is the most dangerous transplant you can have. It runs the most rejection rate out of all the transplants there are. Even in the best of cases, the outcome isn’t so good. The 5 year survival rate is only like 40% or so, but I say at least that is 5 years that I might have. Yet, even in people better than me, they have had plenty of complications. Not one has been done without a complication and they all have been in better shape than me. Out of the last 3 transplants, they lost the last 2. So, they really want to see if they can make me in the BEST shape possible because it is going to be a real battle and struggle through the transplant.
The trip shouldn’t be too long and hopefully I will be home for my birthday. Even though they want to do the ketamine coma and tubes and I need the transplant, everything takes time. They have to work on getting the clearance and organizing everything. So… instead of me staying there and wasting money… they are going to have me go home and bring me back 2 weeks later at the end of February. The doctors also are not on the inpatient unit at this time and when I go in… I need them to have their plate empty so that they can basically handle just me since I take up so much of their time. So, that takes some time to organize and such. So, we are looking at everything taking place at the end of February. The doctors just hope I can make it that long even though they know that I am desperately running out of time. Yet, they know that Rome wasn’t built in a day and everything takes time. So we have no other choice but to wait and get everything done like it is supposed to even though it does take time. Hopefully I will make it.
Well… I am going to get going. Not feeling well at all and I can’t stand to write anymore. I will write again when I know more, which will probably be from Cali. I can’t wait to get there because at least the weather will be nicer. I can’t stand the cold weather and I heard the weather is like in the high 60s there.
I am trying to get things organized for California because I know it is going to be a big trip. My parents are still blaming Indiana for me worsening so much because traveling takes so much out of me. I really hope I will be ok when I go to Cali because I always worsen because of traveling.
I have been looking for some good movies to put on my iPad so that dad and I can watch some stuff on the plane, but I can’t find anything out that is good. I have also been looking for some good books.
I also have been trying to apply for a SERVICE DOG. I really think that would help me in multiple ways. It would help me because I am physically disabled… so it would help me get things and open doors and such, as well as it would alert my parents and help me in case of an emergency. Finally, it would also be a companion as well because I don’t really have a lot of friends around. You really learn who your true friends and family are when you have an illness. However, there are such long waits for a Service Dog. That is one wish that I really do have… it is to get a service dog. But I doubt that will ever happen because the lists are so very long. I do think that it would solve a lot of problems though because not only will it be a dear friend, but it would help me since I can’t really move around and get things. It could help me with my balance since I can’t really stand very well and on crutches, it can turn on and off the light switch since I can’t get up and down easily, it can get me items that I need or drop, it can open doors instead of people not helping me with them and I am locked out or even getting slammed by them, etc. It would definitely give me a piece of mind and a sense of easiness because I am always worried about something happening and not getting HELP in enough time. At least with the dog, he would be able to get help to me or bring me the phone or something. If you know a way of getting a service dog, please let me know. I am extremely desperate for one and would really love one. That is one wish that I would love to have granted and it would be an awesome birthday gift too. It would be soooo helpful… physically, psychologically and emotionally.
Like I said, my birthday is Thursday, so I have that to look forward to. It will be a special birthday because it probably will be my last birthday we celebrate unless there is a turnaround. The doctors already said, “Unless there is a cure or a turnaround, I don’t have long to go.” I just want to be out of my suffering. I am not looking for any gift or anything (I already know I am not getting anything because we can’t afford anything), but I am just looking for getting better and seeing my next birthday. I just wish there was a way I could celebrate my birthday because my birthday will come and go just like every other day. I will spend the day at home… being in excruciating pain…crying and screaming. There will be nothing done to even make it a SPECIAL day or anything because anything that can possibly make it a HAPPY or ‘out of the ordinary’ day can’t be done because of this illness. Between not having money and not being able to eat and go out… it is just going to an average day. I can’t even have birthday cake, but I am still wanting a cake so I can make a wish and blow out the candles. So I will just watch my family enjoy a birthday cake for my birthday that I can’t eat. Maybe one day I will be able to, but in the meantime… I guess I will just have to watch from the sidelines.
Well… take care and I will write soon!