Just wanted to say HI because I know you wrote back. I just have some news to share because some things have happened that I want you to be aware of because I haven’t been doing well and if something should happen… at least you know the latest. Its going to be brief though (Well planning it… but with me you never know. I always have that intention but it never works out that way).
Things haven’t been going well at all. In fact… they are worse than ever. I am really weak and honestly… I don’t know how much more I can take. I am in so much pain that I am literally willing to do anything to get out of the pain. All the pain meds in the world aren’t even helping. I am maxing out on all pain meds and even overdosing on Tylenol. I lay at wake at night feeling so weak and in pain, and I always wonder if I am going to see morning. Sometimes I even hope I don’t because I am suffering so very much. I don’t just have pain… I have pain that goes from the very surface down to the very core of my bones from the tips of my toes to the very tips of my fingers and to the top of my head. It is all throughout my body and nonstop.
Perhaps the pain lately is worse because of everything that has happened in the past few days. I will tell you in a minute about what has happened because you are not going to believe all that has happened. However, with everything that has been occurring with the pain, I have even said that overdosing on Tylenol better ‘knock’ me out because if it doesn’t… I don’t know what I would do. I really understand why they call this illness the “suicide” illness. This illness is so painful and enough to make anyone kill themselves. It is the most painful thing you can experience and it is nonstop. It has even been ranked on the pain index scale as being the most painful thing… more painful than amputation, childbirth, cancer, etc. When you never get a break from it (not even for a second), you can imagine how it can really wear you down. With all that I am suffering from, I would much rather ‘move on’ to a better place so I don’t have to suffer, but I don’t think I would intentionally do it because I am too fearful. I have too much to live for and I am still hoping that I will get better. Even though I am suffering so very much, there is still that tiny bit of hope that I am going to get better still and still going to be able to live out my dreams of becoming a doctor, having a family, living a long, successful, and healthy life without pain, etc. Plus… I am so fearful of doing it because knowing my luck, if I tried killing myself… I wouldn’t be successful and I would end up in a worse state than I already am in. After all, there are no guarantees in life and there is no guarantee that I would be successful if I tried to ‘end’ it. My luck I would end up in a worse shape and I would never want that. So, I am still hanging in there… hoping for that day when I don’t have to suffer anymore even though it is getting harder and harder.
However, I do have to tell you that it is getting really bad and I am getting really weak. I know I have said that numerous times already, but to be honest… I just can’t take it anymore and have come to a conclusion. In fact… it is this conclusion that is partially the reason why I am writing to you tonight because if something should happen and I have to do what I said I am going to do, I want you to be aware of all that is happening. Since things are so very bad and I cannot take the pain anymore, I have totally basically ‘gave in.’ I just can’t fight it anymore with staying out of the hospital and I can’t fight the pain. I am just so weak. It’s at the point that I can barely move and I have to basically have my dad carry me up to my room because I am just so weak. Not only am I suffering from the intense pain down to the bone, but I am also so weak and feel like I am just going to collapse. My legs just feel like they are going to break in half like twigs especially if I stand on them because they are so very weak. My heart bothers me, as I get painful sensations in it and weird feelings from the abnormal beatings. I even have difficulty breathing because of all the spasms around my lungs and the aspirations that are culminating in them. Every time I try to breathe I hear gurgling and feels like there is rice in my lungs. It is just not a way to live.
Therefore, I just can’t hold on much longer. It is at the point that I wonder at night if I am going to see morning because I am so very weak. I always make sure that I say to my parents that I ‘love’ them and I tell God to take care of them if He should take me because I want to make sure that they know how much I love them and make sure that they are taken care of in case something should happen. That is how much I feel like I am going to go.
I have come to the conclusion that I just can’t fight it much longer and even though I didn’t want to go to the hospital and such, I just can’t fight it anymore. I didn’t want to go to the hospital because of the money issue and I didn’t want to remain the rest of my life in the hospital, but I don’t know what other choice I have. People wonder why I don’t go to the hospital to at least get out of pain, but to be honest… even going to the hospital doesn’t help that aspect. There are so many times that I am in the hospital and all the pain meds that they give me don’t even help. Nothing is worse than being in the hospital and laying in the bed being in so much pain and with my autonomic dysfunction acting up. When that starts to act up, there is like no controlling it. At least when I am home, I can overdose on Tylenol, scream, and complain. When I am in the hospital, I am under their control and I can’t just take medicine on my own. I am at their disposal and if the medicine that they give me doesn’t work, then I am left there to suffer. I also can’t scream and cry as much as I might want to and need to because I don’t want to disturb other patients even though it would be quite understandable given the circumstances. But I wouldn’t want to have it done to me by someone else screaming their heads off, so I don’t want to do it to other people. I know how annoying it can be. So… that is just another reason why I would rather stay at home than go to the hospital because besides the financial reasons (it costs me like $150 per day in copayment + $100 for each scan/test/procedure), at least I can be in control of my own meds.
But like I said, I just can’t do it anymore. I am weak and besides my body suffering in pain, it is really weakening and deteriorating. My bloods are dropping and my heart and other organs aren’t doing too well. Therefore, I have concluded that if my bloods drop further, I am going to ‘give in’ and go to the hospital this weekend. I have the doctor in the morning and probably will get my results back later today. My bloods have been dropping lately and to be honest, I am in a state where I can easily have cardiac arrest because my bloods are so very low. Even having an arrhythmia is very possible. I really cannot afford them to go any lower and if they did drop, the docs would probably want me admitted anyway. So, I figured that if I get the results that they did drop, and then I would just go.
However, there aren’t many hospitals that I can go to. Since I suffer from a very rare disease, I have to go to a hospital that can be able to handle me. I will probably have to leave for “Hopkins” or to “Cali” or something. I most likely won’t be able to go to a local hospital even though I would love for that to happen. I need to go to where the specialists are and where I will be able to also be given the ketamine in case I need it. I would especially have to have the ketamine on hand because if I ended up having to go for any procedure whatsoever, I will need the ketamine afterwards. So, it’s a big deal to go to a hospital because I can’t just go to ANY hospital. So I told dad that depending on what happens with the results, we might be leaving tomorrow night for the hospital. My dad was like “just say the word.” My dad kinda can’t wait for me to go because he thinks that if I go to the hospital that nothing ‘bad’ will happen because he has it in his head that docs and hospitals don’t let anything happen to you. He doesn’t want anything to happen to me and he will do anything and everything to keep me alive. He already told me that he wants to have me ‘frozen’ so that I will be around they find a ‘cure.’ This way they will bring me back and I will be alive and ok when they finally find as cure. He doesn’t care if he will be around because the cure can be years down the line… he only cares that I will be here. So we will see where we end up later today.
Why are things getting so bad? Well besides the disease taking off and worsening, I have bad news. I got into a accident the other day. We were driving on Sunrise Highway, which is a major highway. Not only did we get into an accident, but we got into an accident with a huge 18-wheeler tractor-trailer. Of course the tractor-trailer won and of course we were the ones with all the damage and the tractor-trailer walked away without a scratch. These stupid tractor-trailers really need to learn how to drive.
I always have fears when driving next to these trucks because I am always afraid of them coming over into my lane. After all, they aren’t ‘small’ thing. Well, my fear of that came true! We were in the right lane driving and the tractor-trailer was in the middle. He decided to come into our lane and since we were in the right lane and had no place to go because we had the curb such on the right-hand side… we were kinda stuck with no place to go. Therefore, we were sandwiched. It wasn’t like we could have jumped the curb either. So when the truck moved over into our lane, the truck clamped down on our car and ‘chewed’ us out. Everyone (even the cops) said that the truck clamped down on our car like ‘Jaws’ and didn’t have Mercy. They said that we must have been in his blind spot or something and as a result, he didn’t see us.
But either way… we were hit and we have over $10,000 worth of damage. Thank goodness for car insurance though, right? I of course am injured and in pain. My disease is of course also exacerbated because any trauma always causes it to worsen and spread. So now I have to deal with this disease worsening my illness as well. Never a dull moment, right? When the accident occurred, the cops moved us into a parking lot so that we could get off Sunrise Highway since it is a very busy street and a huge truck like that was blocking traffic. Anyway the truck of course couldn’t fit in the parking lot and therefore had to park on a side street. But meanwhile while the truck was parking, the cop was talking to me in the lot and getting all my info. While we were talking we heard a huge bang. We looked up and turns out that the truck hit another car. The cop was funny because he was like “oh no… he hit another car.” With everything that occurred with the truck and since he injured me and such, we are of course suing him. I can’t believe that a huge 18-wheeler hit us.
The very next day I had a ketamine coma because I desperately needed it. I didn’t need it just because of my disease in general, but I needed it more than ever because of the accident that occurred the day prior. I needed it because I was in even more pain and the disease did spread and become exacerbated. The ketamine would hopefully calm things down and stop the progression. However, things didn’t go too well when we went for that either. In fact, things went really badly.
When we went for the coma, we had to abort the coma. This is the first time we actually had to do something like that because things went really horrendous. The doctor decided to raise the dose of ketamine because of everything that was happening and given the circumstances. However, with everything that is happening with my body and how it is weakening and deteriorating, my body just couldn’t take it. When he gave me the higher dose, my body just gave out.
The doctor started the coma and my dad told me the usual ‘sweet dreams’ and ‘see you when you wake up.’ Thank goodness that my dad is allowed into the room when I am in the coma because when I first started to get them, they wouldn’t let him. I used to listen to my iPod to keep me occupied and to block out all the bad ‘nightmares’ and bad stuff that the ketamine can give you since it is notorious for causing all these hallucinations and stuff. But since my dad has been allowed into the room lately, I stopped listening to music and such because I like to hear my dad. When you are in a coma, you might not be able to talk or move, but you can hear. That is why it is important to have visitors when patients are in the hospital in a coma because even though they are in a coma, they are still aware when people are present.
Well… I started to really feel different. I knew something didn’t feel right and I started to get nervous. I asked my dad to come over and give me his hand because I just didn’t quite feel right. Of course my dad gave me his hand and when he did, I squeezed it and never let go. Things continued to worsen and I knew something wasn’t right. I told him to go and get the doctor, but I didn’t want my dad to leave my side. I was so afraid of something happening and therefore, I didn’t want to have him leave. In fact, I didn’t want to even not squeeze his hand because I was so afraid if I stopped squeezing that something was going to happen to me. My dad said I was squeezing so hard that I was cutting off his circulation. Thank goodness the nurse was walking by because my dad grabbed her attention and she went to get the doc immediately. He wasn’t far away because when I undergo ketamine, the doctor can’t take on a full schedule and can’t be far away.
I really was having a bad reaction. I was trying to keep myself calm. I literally was feeling myself come out of my body and I was actually watching my life in ‘rewind.’ I felt in control initially, but after some time I was totally out of my body. I could hear and see them, but I was not in my body. It was really scary. My blood pressure was skyrocketing and my heartbeat was rising too. My pupils were also very constricted according my doc and dad, as they said I had the most pinpricked pupils. They of course stopped the infusion of the ketamine and started giving me other meds.
Thank goodness things started to turn around. As things started to normalize again, I came back to my body. I couldn’t see straight afterwards. There were like 3 of my dads. I also couldn’t stop crying. I was scared. I certainly got freaked. But no matter how bad things got and no matter how scary things were… my dad never left my side. He stayed and held my hand throughout it all.
In addition, the doc wanted to give me a trigger point injection into my back muscles because I am having trouble breathing. In addition to having trouble breathing because of the aspirations and the ‘rice’ feeling in the lungs, I am having trouble breathing because I am having spasms all throughout my body, which is including the muscles around my lungs. The doc figured he would give me the injection to relax the muscles by my lungs and this way I could perhaps breathe a bit better. However, I had the injection before by a different doc and I ended up blowing my lung out. The doctor, even though it was a different doctor, ended up puncturing my lung and as a result, I had to go to the hospital and have three surgeries with chest tubes and everything. They couldn’t get my lung to stand up at all. It was one of the worse experiences I could have ever had. I never want that to happen ever again.
So I was really scared to do it again and was hesitant to do it even though I knew it would probably help. The doc explained to me how he never punctured a lung and how the other doc was a ‘doophus’ and was not careful. He explained to me how he knows how close the lung is to the surface and how thin I am. But… I still was petrified. Even though I knew deep down that it would be ok if the doc did do the injection, I still said “no.” So the doc just gave me tons of muscle relaxants to take as well as more pain patches to see if they would help. He said that if it doesn’t help that I need to come back and he would then do the injection.
So, that is how my life has been. I am supposed to leave Wednesday for Florida. However, we were thinking about postponing the trip. We really don’t have the money for the trip and we are also thinking about going to the Mayo clinic first. This way we will have all the information from the Mayo to share with the doctor. After all, even if I went to Florida to see the doctor for the coma, I won’t be able to have the coma til after the trip to the Mayo Clinic anyway. All this trip was to Florida was for the purpose of going over everything and finalizing everything for the coma since the doctor likes to be on top of everything before doing anything. He likes to have his t’s crossed and i’s dotted before doing anything. He is so thorough that he even videotapes everything that he does and he does everything by the book so that there is no bias. He is the type of doc that is so thorough and careful that you couldn’t find a loophole or a possibility of suing him even if you tried.
Plus… I don’t know if it is worth going to Florida because we don’t have the money for the coma right now anyway. I would hate to go to the place to only find out that I can’t have it in the end because I won’t be able to afford it. Even though I am hoping to raise some money so that I will be able to afford it because I desperately need it and without it I will die, I don’t know if I will be able to get it because of how expensive it is. The doc in Florida wants about $20,000 for the coma alone and I can’t afford it on the funds I have now. That is why I am hoping that I receive some more donations and hoping that the media picks up on my story. I really feel like if the media picks up my story then perhaps I can get the attention that I need to bring in the necessary funds to save my life. I just don’t want to go to find out that there is something and I just can’t get it. It is like holding a piece of candy in front of you and tell you that you can’t have it. It is like a ‘tease’ and I don’t want it. I can’t afford to have any more disappointments. So maybe postponing the appointment will not only be better because I will have all the info from the Mayo to tell the doc, but I will hopefully have a better picture as to whether it will be possible because I will know more if I will have the funds since I don’t have it as of now. You know? So I really gotta make a decision because we leave in just a few days. After all, even this trip will cost money and its money that could be saved and used for a better purpose. It would certainly stink if I went there also this time and then he made us come back after the Mayo to further go over what happened there so that he would know everything that happened there before doing the coma. He is not the type of doc that does things by phone and therefore, he would certainly make us make another trip to Florida before doing the coma if he felt it was necessary, which would only mean more expenses too and it would mean also that this trip in a few days was unnecessary and a waste. So we really need to think what to do.
On a better note, I got my parking permit finally. I finally got a permit for all of New York now so that I can park anywhere and not feed the meters. It is certainly going to be helpful, especially when we go to Manhattan and stuff because we won’t have to go crazy looking for parking and my dad wont’ have to go broke paying the meters. Plus… he won’t have to leave my appointments ether so that he could put money in the meters. It really is going to help out a lot. This permit allows me to park anywhere including “No Parking” and “No Standing” zones. In Manhattan… that is a blessing because there is always no place to park.
Well… mother’s day is Sunday. I really wanted to make the day special for my mom after all she as done for me. However, with all that I am going through… we really can’t do much. We really don’t have the money to do anything and we really can’t go out to eat either because I can’t eat on the outside. I feel really bad because I want to make the day really special and show her how thankful I am that she is my mom. She has given up so much for me and I can’t tell her enough how much I love and appreciate everything that she has done for me. She is certainly the BEST mom in the world and I wouldn’t want a better mom. I only wish I could make the day better for her but everything that I want to do for her to make it the “best” day for her can’t be done. It is so unfair because she has given up so much for me and I can’t do anything to make it the BEST day in her life. I am going to cook her dinner and such, but it doesn’t compare to going out to dinner and such. She says that she doesn’t mind, but I know she really does deep down. I only wish that I could make the day better for her. She is deserves the BEST because she is the BEST.
Well… going to get going. I am not feeling well and just wanted to give you a heads up on what happened in case something should happen. Hope everything is well with you. As I said though, I have a lot coming up and need funds. I am supposed to be leaving for Florida on Wednesday. I am leaving for the Mayo Clinic in Minnesota on Memorial Day. I desperately need funds for this, as well as for the coma. I desperately need funds, especially if I end up in the hospital this weekend because the copayments alone will be so expensive.
Please continue to say a prayer for me. Please continue to spread the word that “help” is needed. If you can think of any way to bring in donations, please tell me because I am up to anything. Thanks again for all your continued support. I really appreciate it. I have really been having a difficult time but knowing that I have your support behind me, it really makes huge difference. By the way… have a good book to recommend that might help understand me better. Its called “How to be a Friend to a Friend Who’s Sick” by Letty Cottin Pogrebin.