What is going on? So much has been happening lately, so I figured that I would just give a little update as to what has been happening.
It is getting close to leaving for California, as I leave in only 1-½ weeks. I am really deteriorating and hoping that even though California is so very close… I am only hoping that I will still be able to make it there. My parents are very nervous about me because my parents are afraid that I am not going to make it. My dad is very nervous because he knows what “traveling” does to me and how “hard” it is for me too. It is very stressful on my body and stress is something that my body does not tolerate well. My body really acts up when it is “stressed” out and really makes my disease flare up a lot.
I really don’t want to go in a way because I am really nervous. I am meeting so many doctors there… the transplant team, brain surgeon, surgeon for the gastric pacemaker, etc. and I am really afraid of what they are going to say. I am not just afraid of that, but I am more afraid for my dad because I know how much all this means to him. In the past, doctors have been really hesitant to “work” on me and such because of my complicated and complex medical condition. I am really high-risk and they are really scared to do anything on me. Plus… not a lot of doctors know exactly how to treat me also and therefore, it is really difficult to get the necessary “help” that I need. However, the STANFORD MEDICAL CENTER in California is supposed to be one of the BEST hospitals in the country and known for these risky cases and such. I only hope that they stand by what they say and continue to work on me. I am not just afraid of bad news for myself, but I am afraid of bad news for my dad because I know if something happens to me… my dad would never recover.
My dad is also worried about me losing weight because I literally weigh nothing as it is. I can’t afford to even lose an ounce and when we travel away from home, I don’t really “eat” as I should. I am a self-conscious about eating away from the house since I can’t keep food down and end up vomiting everything and therefore… I don’t really eat as I should because of fear of embarrassment. In addition, I don’t tolerate food well and if I am not home, I cannot eat the food that I can normally eat. I have a “dead” GI tract and extreme difficulty swallowing and therefore, only certain things even go down. So… I am really limited in what I can eat and drink because of this.
When you go away, you are kinda at the mercy of what the chef at a restaurant prepares and makes and therefore, you can’t always get what you can and want to eat (as you would at home). So… I really end up freaking my dad out because any ounce I lose is extremely detrimental to my health, as I only weigh in the 60s and once the weight is lost, it is basically lost forever because I can’t regain it. Especially for the surgeries and the transplant, I need to be as strong as I can be and that means to have as much weight as I can on me. Without weight and appropriate nutrition, I won’t heal and be strong enough to recover.
California is around the corner and funds are really short too. I am really afraid that not just with California, but with all my treatment that it will end up having to be “cut” because we can no longer afford it. My disease is extremely costly and the bills are growing. We have made so many “cuts” in my treatment and yet… it doesn’t seem nearly enough. It is a shame that my life depends on money and that is something that I don’t have. As a result, my life essentially rests in the hands of the people of the world because without the help of others, I fear I won’t be able to continue to seek treatment. I desperately need to raise funds and need support.
I am so fortunate that some people have stepped up and helped me out. I can’t thank them enough because my life literally depends on it. However, there is so much more that needs to be done. I am running out of time and deteriorating quickly, as I was diagnosed with RARE and LIFE-THREATENING diseases. Treatments in California, Florida, and New York, which are VERY expensive, are my only hopes for survival. I need to get to California to have surgery and get a small bowel transplant (small intestine, large intestine, stomach, esophagus, etc.), as well as to Florida for an intensive ketamine coma that insurance won’t cover. I am too young to die and I have so much that I still want to do! My family and me are watching my life slip away.
I can’t believe that some people have stepped up and helped me though. When I see people helping me… even if it is just by spreading word on Facebook or something that I need help, you can’t imagine what it means to me. These people are what definitely keeps me going!! I can’t tell you how much that means to me. Without you… I definitely wouldn’t be where I am today.
I only wish the media or a magazine would pick up my story so that people nationwide could be able to see it. Maybe it would bring in a lot of funds that way. It really bothers me that I have tried to contact media such as talk shows, news, magazines, etc. and gotten nowhere. Yet, I see other people on TV and see their stories. I wonder what I am doing wrong and how they get their stories on. But I guess it is like the saying goes “It isn’t what you know… it is who you know.” Even if I don’t get the funds, at least if it is televised or in magazines, at least I can bring awareness or attention to my illness and leave a mark that way. I want to leave a lasting legacy and perhaps this can be it. People shouldn’t take anything for granted because who would think that this would happen to me. In a heartbeat, something can be taken away and therefore, people should be extremely grateful and appreciative for what they have.
O by the way… I had someone send my story to SKEERY JONES from the radio station known as Z100, which is a very popular station. I was really glad to see that he shared it on his wall on FACEBOOK. If you look on his wall… it is there. Just be careful because just as I learned… there are 2 pages of his.
Things have not been good lately. I have had a very bad day… but that is nothing new. I went today to have my bloods taken because my bloods have been really low lately and have been at risk for cardiac arrest and arrhythmias. I have also had to get my heart checked out because of the fact that the doctors in California wanted to put me on a medicine that would effect my heart because prolonged QTs. I already suffer from prolonged QTs and therefore, this medicine could cause them to worsen, especially since I take Methadone, which is known to cause that too. In fact, my heart doc has always told me in the past that I can raise any of my meds, but I can’t raise the methadone because of that very fact. So… I had to go for the heart test to see if I could tolerate the new med. It would be a shame if I couldn’t because we are basically at the bottom of barrel already.
Well… I just got back my bloods, and of course they fell. But, I am so glad I get to remain at home after all that happened today. Really thought that I would end up in the hospital, but luckily, they let me stay at home. My bloods really dropped… and it wasn’t good because they were low already. I am a cardiac arrest waiting to happen. I also spoke to the docs in Cali. They are counting down the days til I go there. 1 1/2 weeks more. I am so nervous. I really am scared to go.
I should really be in the hospital, but the doctors are trying to really hold off on that as much as possible. They don’t want to hospitalize me.. and will try to avoid it as much as possible… but if my bloods are too low… they will have to send me to the hospital. My bloods are already too low and I can easily have arrhythmia or cardiac arrest. They send my bloods out STAT so who knows where I will be tomorrow night. Hopefully I will still be able to stay home.
The hospital isn’t the best place for me and they know it. It is a place where I can easily get sick because I have no immune system and susceptible to everything. If I get sick… it can easily kill me too because I can’t fight it. Everything is worse for me too. a simple cold to a normal person is like getting the flu to me. So… u can just imagine how bad it is. Everything is so much magnified for me. Then… with all that is happening… I can’t really take meds that would help “cure” any sickness. First of all… I am on so much and therefore… there are so many interactions tat it really makes it impossible to take things that could help if I get sick. Second of all… I don’t absorb things either… so even if I could take something… there isn’t any guarantee that I would absorb the med. I can take meds in the morning and then at night (after dinner), I can vomit and bring down in a cup to my dad all the pills that I took in the morning… whole and not absorbed. It is really amazing how it is over 12 hrs. and they are still there… whole and such. In fact… one time I had a procedure where they make you swallow a camera. It is so they can see how your GI system is. We waited a lot of hours before I ate too, but when I did eat… guess what happened? I vomited up the camera. The doc never saw anything like that before. The shell of the camera was even on it… which should have broken off at the very least.
In addition, it is also dangerous too for me to take meds because since my GI system is paralyzed, they have to be careful what to give me. Pills don’t dissolve where they are supposed to. Instead, they dissolve in my esophagus and therefore, they can easily rupture my esophagus. I can’t tell u how many times I had to have an emergency endoscopy so that they could pull out a pill because it was stuck there. It is also really painful too because it dissolves in my esophagus where it isn’t supposed to be. Anyway… the docs don’t want me in the hospital because not only because of the infection risk but because I can’t be treated like a “typical” patient. Therefore… there is usually more harm than good that is done. U know?
Plus… the stuff that is given that could raise my bloods is really painful and burns up the veins in a NORMAL person. In me… it would be even worse. So… if a normal person really can’t tolerate that med… you can just imagine how horrible it would be for me. I can’t even tolerate saline IV in me… so u can imagine this. Also… they know it would only be temporarily too. Once I get out of the hospital… I would be back to square one too. So… unless I remain in the hospital forever… they know that it kinda is pointless because it will only go back to the way it is when I come out. But… if the bloods get so bad… they of course will have to put me in because they aren’t going to let me die at home. U know? But they are just actually hoping that I will make it to Cali first because that is probably the best place for me.
In terms of the heart test though, although it did appear that the med would possibly affect me because of the prolonged QTs, they are willing to TRY it. Long QT syndrome (LQTS) is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death. It is really dangerous to me too because of my poor bloods. I am going to be closely monitored and therefore, they are going to try it because things are getting so very bad. Something just has to be done because I am getting so very bad and suffering, so they are going to try this. I just have to be extra careful because I already have the prolonged QTs and I can’t afford to have anything exacerbate them further such as limiting physical activity or stress. I don’t have the problem limiting the physical activity because due to my illness, I can’t really do anything. But… the stress problem is going to be a BIG problem. Due to everything happening with me… I have a HUGE amount of stress in me. Who would expect something different… especially with everything that I am going through.
I also have started a new injection lately for my bones because they are really bad. Even though I have been receiving bone infusions, my bones are still deteriorating and the doctors are very worried that I am going to get a life-threatening fracture. As a result, the doctors have placed me on another daily injection to add to all the rest. I have been getting the worst side effects from it. It has felt like my throat has been closing up, I was dizzy, weak, in pain, etc. However, I have been continuing to take it. However, it has been a couple of days and it hasn’t gotten better. I was hoping that it would get better and since my throat wasn’t “completely” closed up… I still continued to take it. In addition, with this new injection being taken, it is getting really difficult to take my original injections because it is like something is stopping the needle from going into my belly. All the injections go into my belly and since I am so small to begin with… there is only so much room to play around with. U know? I just don’t know why I can’t get the original injections into my belly anymore. I don’t know if the new injection is forming scar tissue or anything, but this is definitely something I can’t afford because I don’t have anyplace else I can put the injections.
But… it is at the point where I can’t do it anymore. I didn’t take one of the injections tonight. It appears that I have been having worse than ever side effects from it. So we are holding off until we speak to the doctor, which we couldn’t get in touch with because something must have been wrong with the phones. So…. we are holding off because we didn’t realize that I shouldn’t be taking it… especially since I have kidney stones and hypercalcemia. So with everything going on… we stopped taking it until we speak to the doctor. However when we tried to contact the doctor today, we couldn’t reach him for some weird reason. There must have been problems with his phone because it is very weird that you can’t get through to him.
I really can’t take the pain of the new injection either or the side effects from it. I don’t know what I am going to do about it too because I can’t tolerate it. To think… I am supposed to even be taking yet another injection for my intestines and such, but have been holding off because that injection is WAY too painful. It is so bad that it has the nickname LIQUID FIRE. I am in way too much pain as it is… if I take that… I will literally go through the roof. It killed me by taking that injection without these other ones… I can’t imagine what it would be like with the injections now. I don’t know what is going to happen. There really isn’t any other options and I know how important all these injections are. But I am getting just so very sick from them. I don’t know what I am going to do. Something really bothers me about taking them too because honestly… if I don’t have that much time left… why do I have to spend all this time or whatever time I have left “suffering?” Enough is enough.
To be honest… I am not doing well. I never know what is going to happen with me. I have been doing worse than ever. I don’t know how much longer I can hang on. I am getting pains and visions that I never got before. I am getting really weird things. The docs say that it is because of the brain tumor. But who knows. All I know is that I was used to all these things that I Was experiencing, but these things are “new” and therefore, even though the old things that I was “used” to were scary… these are really scary because they are new and not used to and I don’t know what is going on. U know? I just hope that I make it because I honestly don’t know what is going to happen. I don’t even know to be honest if I am going to make it through the nites or days anymore. Things are getting really bad. I am so very scared. The neurologist said it’s because of the tumor, but who knows.
I don’t think I can honestly do this anymore. People say that I’m sooo strong, but I am really not. My parents especially say “I am sooo strong and brave!” The thing is that I am really not. This is me with all them and of course u behind me. I wouldn’t have the strength or attitude without them or u. U r my support team. I fight for you guys more than I fight for myself.
But games on to now find a donor and have brain surgery before its too late. Then the game will b just to survive it which will really b one difficult task… Something I am really scared that’s not going to happen.
Yesterday, I also spoke to the neurologist from California because I had some huge problems. I haven’t been doing well at all. I have been in such weird states. Today I blacked out and couldn’t figure out where I was. It took me a while to figure out where I was (I was in my room and in my bed). Then when I finally figured that I was in my room, I couldn’t remember and it took me a while to figure out that I was in my bed. Then I couldn’t even remember which way I was laying. It has really been getting weird. I have been getting the weirdest sensations and things that have not been happening before. I have been having a lot of blackouts, memory problems, confusion, etc. I also have been having really bad headaches, trouble seeing, and a lot of pressure in my head. Something just doesn’t feel “right.” I have experienced a lot in the past… but this is all new… so it kinda scares me because I am not used to this. I am literally feeling like I am coming out of my body and it freaks me. When I told the doc all this, he said that it is probably because of the brain tumor and that is why I am seeing the neurosurgeon when I go to Cali. He said that I am seeing the BEST neurosurgeon there is and that he will take GREAT care of me. I told him that I didn’t expect anything else because I knew that he would only send me to the BEST.
But… just to know that the blood levels are so high for the tumor and that these things are probably all associated with the tumor… it really scares me. The highest level it should be is 23 and mine is over 75. When I told my dad this… my dad said that he just hopes the neurosurgeon (even though he is the best) does something to help me because I have had so many doctors chicken out because of the risk that I am. I am extremely risky and so complicated. But… Stanford is supposed to be like one of the best hospitals in the country and they are known for operating on high-risk cases. The surgeon is known for this as well, so hopefully he will be able to help me. I also talked with the neurosurgeon and he gave me an appt because he too wants to see me when I come to Cali. Gosh… so many docs to see when I go. That first day is going to be soooo booked with appts. I literally go from 10 AM with the neurosurgeon to seeing the neurologist/autonomic dysfunction doc at noon to seeing the transplant team at 12:30. The doctors in California are not like the docs here that they only spend 2 seconds with you either. They spend so much time with you and let you ask all the questions you need and explain everything thoroughly. They never push you out. It is nothing to spend like 2 hrs. in an appt. so… u can just imagine how tired I am going to be after all the appts on Monday.
Dad and I were watching the brain surgeon that I am seeing in Cali speak. He did this whole entire speech and lecture about the exact type of tumor that I have as well as how they go about treating it with the different surgeries and such. My dad asked my mom if she wanted to c it but if course she didn’t because she hates watching all this medical and gory stuff. Anyway… This neurosurgeon I’m seeing is really top notch. They do procedures there that no other places do. Besides doing the regular craniotomy where they open the skull and operate that way, they can also go through the nose and open up the skull that way by removing part of the bone to enter the brain that way. It’s a lot easier to recover from and everything.
You know how there are regular surgeries that are huge in the abdomen and then laparoscopic surgeries that make it so much easier on the patient? Well this is kind in the same way of thinking if u get my drift. The only thing is that the surgeon has to be really experienced and know what he’s doing because he’s essentially blinded since he’s going through the nose and sinuses and entering the skull that way. The doc also said how the tumor in the pituitary is right over there so it basically “falls through”. It really was cool to know all these different approaches that he did and know how experienced he is to do this. They do a “team” approach and they even have cyber knife surgery too. But I guess it’ll b up to the surgeon when I see him to see what I’m better off getting. I just hope I’m not going to have to have radiation or chemo like they said is a possibility. I would never be able to handle it. Dad said he would shave his head with me but it wouldn’t matter. Enough is enough and if it honestly comes down to that… I don’t know if I’m honestly going to proceed with it.
I also have been so bad and deteriorating that I have to go for an emergency ketamine coma. The problem is that I am leaving for Cali in less than 2 weeks and therefore it has to be done really soon. I have to really have it done this week because of the fact that it could mess around with the tests that they are running and it also gives me severe pain and messes around with my autonomic dysfunction afterwards. My body kinda pays me back for “starting” with it. Some people say why do I bother going for it if it causes all these problems afterwards, is so risky to begin with, gives you severe nightmares and hallucinations, etc. But the reason I go for it is because at least it will take me out of pain for the day. it gets to the point where even being out of pain for the day is better than nothing. I never get a moments rest, as I am in pain 24/7.
So… I am willing to take anything. I just curse it out afterwards. LOL. I am in so much pain and agony that I am not only overdosing on meds at night anymore (which it used to be because as the day and night go on… the disease gets worse and worse). It is at the point that no matter what time of day it is… it is just unbearable. I used to have to sleep (well not really sleep but lay on the bed) with my feet out of the covers and off the bed because of the hypersensitivity. However, now I have to lay with my entire legs off the bed and out of the covers because I can’t tolerate it touching the bed or covers whatsoever. It is unbearable.
You can’t imagine the pain or the suffering because if someone told me what this is like… I wouldn’t understand. I don’t wish this on my worst enemy. My dad always says that he wishes that he could take my pain away and take it from me. I always tell him that he would never want to do that because he would never be able to handle it. I told him that he would give it back to me in a second. I just need the ketamine so badly but I can’t go next week for it because it is too close to leaving and will not make me able to sit on the plane since we leave that Sunday. It is hard enough to travel and such without the ketamine. But with it… it will be impossible. Plus… since I have the tests there… it really will interfere too. So… It is really necessary to have it as soon as possible (like this week) so that I have the most amount of time to recover and so that my body can go back to the “regular” way it always is.
Plus… I am literally climbing the walls too… so the sooner the better. But the problem is that with everything happening with California and the bills and such… my dad can’t take off this week to take me for the coma. It literally takes the entire day and it forces my dad to not work the entire day. So… my dad really has too much work to do that this week and therefore, the soonest he really can take me is next Wednesday, which is really no good. It is no good because first of all… it is like 3 days before we leave for California and my body would no way cooperate to go to Cali and sit on the plane and such. Second of all… it would definitely probably mess around with all the tests and such because there isn’t enough time to “bounce” back. Third of all… we are talking about another week away and I am not going to make it that long. The problem is that he can’t really do this week and although I really need it, he really can’t do this week. He said that if worse comes to worse he can do Saturday, but it really isn’t good for him. It would make him LOSE A LOT of work and would really be detrimental to him. It would force him to really overload on work and work from morning to night even on Sunday. It would really be a BIG inconvenience. So …. I really don’t know what to do because I know how much I need it and how much my dad also needs to work. I am so confused and don’t know what to do. I feel bad making him take me … but I know how much I can’t last and need this. I don’t know what to do. I am so screwed.
Right now I am scheduled for the ketamine on Saturday, but I don’t know if it is going to happen because my dad really can’t take off. Him working is so very important and therefore, I will probably end up canceling it. But… I will let you know.
I had the dentist the other day and he literally KILLED me. He said that he could tell that my disease is getting so much worse because he never saw my mouth so bad. He said it really was a “disaster” in side. He could like barely touch me because of the pain. Every time he spun the drill or put water in my mouth or had to blow air on my teeth I was screaming and literally going through the roof. To think… I deliberately took extra pain meds right beforehand too so to try to alleviate some of the pain. I don’t even want to fathom what it would be like if I didn’t. He said the teeth and the bones in my mouth are really disappearing BIG time. It really scares me because I don’t want to lose my teeth.
My gums are really receding too. He said with all the stress I am under and the disease getting worse… that is why my teeth are so bad. According to the doctor when she did the surgery 2 weeks ago, everything in my GI system was really dilated… much more dilated than it should be. There is so much bile everywhere… definitely where it shouldn’t be. Therefore, the bile is coming up and eroding my teeth. Plus… since I am always vomiting… that isn’t helping either. It just isn’t fair. I ended up leaving the dentist in excruciating pain. I had pain in my mouth and going up to my head because it was traveling everywhere. I thought I was going to explode. I was climbing the walls and nothing was cutting it. Luckily I took more pain meds and it kinda knocked me out for a bit when I came home. That is the beauty thing (if you want to call it that) about the meds… they really don’t help but “mask” the pain. All they do is knock you out for about an hr. once that hour is up… you are wide awake and the pain is back. I don’t want to imagine what it would be like though if these meds were not helping.
On a better note though, I have been trying to read. That is just one more thing that the disease has taken from me. I used to be such an avid reader, but since I got sick… it has been really difficult. By the time I get to the end of the chapter, I can never remember what I read in the beginning. I used to have the best memory. But… that is something that this disease has robbed from me as well. So… I am now reading the book DISCOVERY OF WITCHES by Deborah Harkness.
I am also trying to think of some good books an movies to bring with me to California. It is going to be one long trip and I definitely need something to do on the plane. My dad and I usually watch tons of movies on the iPad. So… if you have any suggestions, please feel free to let me know them. One good thing about this illness is that I can see a movie or read a book over and over again because it is like reading or seeing it for the very first time because I can’t remember it. I have been thinking about bringing with me LORAX and HUNGER GAMES. But I can’t think of any other.
In addition, I have also been busy making my BUCKET LIST. This disease has taken so much from me and I have had so much that I haven’t been able to do, so I am making a list of all the things that I really want to do once I get better. I really hope that I will be able to do it.
Well… just wanted to give you some up-to-date info. I think I filled you in on enough info that is going on with me. If you have any suggestions on how to raise some funds or anything, please don’t hesitate to contact me through this site or at Spunkyfal@aol.com. Any help you can give me would be greatly appreciated.
Well… just wanted to thank you again. Talk to you soon.