Since I went to the doctor today about my foot and have news about it, I really wanted to share what is happening. In addition, I have so much other stuff happening that I don’t know if I am coming or going. To make matters worse… it is my mom’s birthday today and I even feel bad about that too. It is like a real disaster zone in my life and it is like the titanic finally hit the glacier and is going down. I am sinking faster than ever and to be honest…. I don’t know if I am going to be able to survive this. The boat is filling up fast with water and before long I will be submerged with water and under the ocean. I keep getting hit with so many things and I just can’t take it anymore. There is only so much a body can take and I think I have reached my maximum. You know?
To begin with, I had an appointment this morning for my foot because I had the soup can fall on it and as a result, I thought it ended up breaking my toe. I had developed a huge blister on my foot as well, which looked like a ‘water’ blister, but when you carefully look at it even more, you can clearly see that it isn’t filled with water. When I spoke with the doctor, the doctor was fearful that it was a certain blister called a “fracture” blister and therefore, she wanted to see me as soon as possible. Fracture blisters are a relatively uncommon complication of fractures. It is caused because when the bone breaks, it ends up bleeding and therefore, tense vesicles or bullae that arise on markedly swollen skin directly overlying a fracture. Fracture blisters are in and of themselves painless much like a friction blister or blister of a second-degree burn. The doctor especially wanted to see me because due to me having my neurological condition, nothing presents itself like it really should and in addition, we are always fearful that amputation is always a possibility because of the severe reduction of circulation due to the disease.
The doctor was shocked with how bad I was with my disease. I was fortunate that she actually was somewhat familiar with my illness because not many doctors ever are familiar and have come into contact with my illness in the past. However, she said that when she was a student, she said that one of her first patients actually suffered from a similar case, but it was definitely not nearly as severe as me. Just as all the other doctors have said that have treated me and have seen me and heard about me, they have all stated that I am the worse case that they have ever seen or heard about in the world. They all say that I am the worse that has ever existed and that is why they don’t know what to do. They all acknowledge how horrendous this disease is and how unbearable it is. Some doctors have claimed that if “Hell was a medical condition, it would be known as my illness.” It is the worst thing that you can ever imagine and I am not just saying it because I am going through it or because I am feeling ‘sorry’ for myself.
With all that has happened with me in the past and is occurring with me now, as well as with the nature of the disease itself, all the doctors have stated, “It is a miracle that I am still alive.” They credit my family for being a great support mechanism and for the main reason why I am here today. I definitely how the best family and if it wasn’t for them… especially my dad… I wouldn’t be here. You know? But I have done so much to them and they have given up so much of their lives for me that I feel so bad for everything that has happened and the way it has all turned out. They definitely don’t deserve all this and I really wish that I could make it up to them and that it would be better for them. I definitely wish I could make their lives better because they are such amazing people and definitely deserve to have better lives. But unfortunately, not only has this disease robbed me of my entire life, but this disease has robbed my family of their lives too. We don’t do anything anymore except sit in the house and look at the 4 walls; we don’t go out and have fun, we don’t go on vacation, and we don’t even go out to eat. My family really has given up everything because not only can’t I do many things because of the physical incapacities and because I medically can’t do it, but the financial problems are really affecting us mega time.
Anyway… when I went to the doctor, I couldn’t find a nicer doctor. She was really amazing. She was really touched by my story and in fact, she actually met me first thing this morning to see me. She didn’t even have an appointment, but she was willing to meet me as an “Emergency” to see me before she even began her office hours because she knew how important this appointment was and how much I really couldn’t come in the afternoon either because as the day progresses, my illness gets worse and worse and I have difficulty walking. But she was willing to actually get there earlier and take me on just so she can ‘help’ me. It was really one of the nicest things people can do because she went out of her way for me. I really appreciated it because I know it wasn’t easy for her especially since she has a child and had to put him on the camp bus and everything. In addition, when she didn’t just meet with me and just see me and kick me out. Instead, she spends so much time with me, as we were there for about 1 1/2 hours. She really was a tremendous help!
It turns out that I did in fact break my toe and she does believe that the blister is indeed a fracture blister. However, due to the nature of my illness, there isn’t really much that she can do because she can’t immobilize anything or do anything really to the foot because of my illness. But at least we know exactly what we are dealing with. We took an x-ray to confirm everything, but I am still waiting to hear 100% that it is confirmed, but she basically said it was 99.9% already confirmed. I also asked her what are the chances of something happening and having to have it amputated and such, but she said that ‘All bets are off!’ No one knows what is going to happen with the foot, but we know that having this is not a good sign. We know that especially with my illness how difficult it will be for me to heal and now with this severe fracture and severe blister and such… it doesn’t look too good. I am so very scared because I know how bad my circulation is and I am so scared of losing my foot. The foot is black and when I looked at the foot tonight, the blister is blacker than ever. I am so scared that something is happening. The doctor told me that under no circumstances should I ‘pop’ the blister. I tried contacting the doctor tonight to alert her as to what is occurring, but unfortunately her mailbox is already all full and I can’t leave her a message. I am going to try her again first thing in the morning, but I am extremely nervous now and freaking out. In addition, it is killing me in pain and itching me. I am so scared.
Since I was there, I also had her look at my other foot since I was having difficulty walking on my right foot as well. Since I have the illness in my entire body, but it is worse in my left leg and foot, I cannot put any pressure on the left foot or wear a sock or shoe on it. Therefore, it is not such a major thing that the doctor couldn’t do anything to immobilize the foot or anything because of the break because it isn’t like I put pressure or walk on the foot anyway. However, I do put all pressure and use my right foot like crazy. I depend on it, as it is the leg that I walk on and if I didn’t have it, I would honestly have not one foot to walk on. So it is really important not to lose function of that foot. So even though I have been suffering in horrendous pain and it has really been unbearable to walk, I have been enduring the pain and trying as much as I could to walk on it as much as possible because it was my only choice. But let me tell you how difficult it has been.
The pain that I have in my right foot is so unbearable and it was preventing me from walking. So when I showed the doctor, it was discovered that my entire right foot is especially inflamed! The doctor also saw that I had some corns on my foot as well, and I even had 2 seed corns. Whereas a corn generally is usually hard and is a small patch of thickened, dead skin with a small plug of skin in the center, a seed corn are clusters of tiny corns that are very tender especially if they are on a weight-bearing part of the foot. It is like walking on pebbles. Seed corns are believed to occur because of blocked sweat ducts. With the autonomic dysfunction that I have, there is no wonder that I developed seed corns because I lost the ability to sweat. These seed corns were also part of the reason why my foot was so inflamed. So I was really in bad shape because now not only was I suffering from pain because of my illnesses, but I had severe pain because of these seed calluses, which really had to be removed. However, it isn’t so easy in me because any touching is so severe for me and even the most innocuous touch is like someone sticking a knife through me. In addition, even the slightest touch or trauma has the potential of spreading my disease and it is already spreading like a wildflower.
That being said, the doctor was really in a predicament because if I was a regular person, I would have already been given injections already to take out the fluid, injections to ease the pain, etc. However, due to my illness and how anything ‘traumatic’ or invasive can potentially spread my illness, the doctor didn’t want to take the chance and spread the illness or make it worse since I am already really suffering and it is spreading like crazy. The doctor did say that she wanted to remove the corns and seeds corns though because that was contributing to the pain. However, it wasn’t going to be a pleasant experience because it entailed digging it out and cutting it out, which would be very painful to me especially since I am so hypersensitive due to my neurological illness. However, I really didn’t have any choice because I was having these issues and was having a huge problem of being unable to walk, bear pressure, and have pain because of them. Something definitely needed to be done because without it, I would continue to suffer and we all know how desperately I can’t lose function of that foot. After all, I depend on that foot totally because I can’t wear a sock or shoe on the other foot or even walk at all on it either. So, I really had no other choice but to have her work on it. My dad was “Mr. Macho” because he was like “Just Do It!” It was easy for him to say because it wasn’t his foot. He is always so quick for a doctor to do something because it isn’t his body that it is happening to. I know that he only means well because he doesn’t want anything happening to me, but he is always fast to jump into action when he isn’t the one being touched and such.
Well… I did endure the procedure and she did remove as much of the seed corns as possible. She couldn’t remove all of it because it was just way too much there and too much for me to bear. She would really have to do ‘surgery’ in order to remove the rest, which is something she couldn’t do with the amount of pain that I was in or when I was conscious. However, she was such an excellent doctor and was so caring and considerate that she said that if I ever was hospitalized or if I ever was under anesthesia in a local hospital, she would come into the operating room and perform these procedures while I am under anesthesia so that it can be properly done and it can disappear like it should. I really appreciated her saying that because what doctor would be willing to go out of her way and go into an operating room when it isn’t even her procedure that she is operating on just to do something? You know? She really is something. She was quite aware that we were leaving for HOPKINS and she said that if it was local, she would be the first one there when I went for the surgeries to do it during that time. She really was amazing. She was by far one of the nicest doctors that I have ever met and the most helpful.
Since I had so many problems and I am in such bad shape, the doctor also prescribed me a ketamine cream. I am in so much pain and in such bad condition that the doctor gave me the ketamine as a way to help everything. However, the only horrible part is that I can’t get the ketamine cream in a traditional pharmacy. Just like the other ketamine that I take, I need to get it at a special ‘compound’ pharmacy and therefore, it would take about 6-8 hours to make. However, the pharmacy that is making the ketamine cream is supposed to be able to deliver it to my house right after it is made and within 24 hours, which is great because it will save me a trip to the pharmacy and will mean that I will definitely get it tomorrow too. However, I am in so much pain and suffering now that I wish I have it as of now. In addition, I can’t believe how much this ketamine cream actually is. I am only hoping that it works because even my dad can’t get over how much the ketamine cream actually costs. Just for this cream, it costs about $2,000. Can you imagine a little cream costing that much? It better work after all that!! I can’t believe how I am so loaded up on ketamine. I take ketamine infusions and go for ketamine comas, I take ketamine daily at home, and now I have ketamine creams. I feel like such a ‘druggie’ because of all the drugs that I take… ketamine, morphine, methadone, dilaudid, nucynta, etc. It just doesn’t stop. Gosh… if I ever had a drug test… I would fail it immediately!
In addition, the doctor also has hyperbaric chambers. She really thinks that I need this method of action to help me recover from all this, as well as she is hoping that it might help me with my overall illness too. She is hoping that it could at least help restore the oxygen and restore the circulation to my tissues because like I said before… my disease has really compromised that and as a result, my limbs and organs are being depleted of circulation and oxygen. My left leg especially turns all black and even remains black even when elevated (instead of resuming normal coloration because it is raised). The doctors are even fearful that so much damage has been already done because the tissues have been deprived of oxygen for so long that even if I did get better, I would still end up having to have amputations. But hopefully with the hyperbaric oxygen, it can all be avoided.
It is also believed that the hyperbaric oxygen therapy can help promote healing in the body by increasing its exposure to oxygen. Bringing more oxygen to the brain and tissues can help it to recover from damage and function more efficiently. It has been shown to be very promising for various conditions such as Autism, CP, Stroke, MS, Mitochondrial Disease, Chronic Fatigue, Lyme Disease and other neurological conditions. Therefore, it is hoped that it can help me too. After all… when we normally breathe oxygen, it is at a concentration of 21%. Yet, a patient in a hyperbaric oxygen chamber breathes 100% pure oxygen under pressure. This pressure allows for oxygen to diffuse into the cerebrospinal fluid and brain tissues at concentrations far beyond what can be achieved under normal atmospheric conditions. In other words, oxygen concentrations are increased to the point above what the blood could normally deliver to the brain, and the ‘recoverable brain’ cells are jump started back to life!
The problem is that it is incredibly expensive. I have thought about having this treatment in the past because even though I have tried everything else under the sun such as sympathetic blocks, machines implanted, sympathetomies, therapy, medications, ketamine comas, etc., I have not yet tried this simple therapy of Hyperbaric Oxygen. However, since there is no real ‘promise’ that it will work, I really didn’t want to invest in it because of how expensive it was and how it was more important to allocate our funds elsewhere since we really didn’t even have enough money to cover even the needed treatment that I was currently receiving. We explained all this to the doctor and this doctor is amazing because she is trying to find a way so that I will be able to get this opportunity as well as other ways of getting help so I can receive the life saving treatment that I need.
I really need treatment desperately because I am deteriorating so much and so fast. I really don’t have time on my side and unless something is done fast, I don’t know what is going to happen. However, my family doesn’t have the money anymore to give me the treatments that I need and unless I get the help from others, I will not be able to get them. They are just all so expensive and without the help of others, there is just to way I will be able to get the lifesaving treatment that I need. As I have said in the past, I have tried numerous ways to raise money, but we all know that the best way to raise awareness to my situation and raise money would be through the media. However, no matter how many times I have written to all the different kinds of the media such as all the different talk shows, the news programs, etc., I have never really been successful because in this world “It isn’t what you know… it is who you know” and unfortunately I don’t really know anyone with connections. So unfortunately I haven’t been able to receive the ‘help’ that I really need and I have had to sit back watch other people on TV get the awareness and attention that I so desperately need. However, I am so lucky that I went to this new doctor because she said that she is going to try to help me out in any way possible.
This doctor is really amazing. She can’t make any promises, but she definitely is going to try to help me out in any way that she can. She knows that the trick to raising awareness would be awareness through the media and therefore, she does know people and doctors in that area. In fact, one of her contacts just happened to be one of the doctors that was feature on the “TODAY SHOW” the other day. I am really hoping and praying that she will have some success in this because it would be amazing if this all would work out. She said that my story is really ‘a great story’ and ‘definitely a story you don’t hear everyday!’ She is also going to try to get me treatment with the hyperbaric treatment at gratis so that I don’t have to pay for anything since I really can’t afford it. I am only praying that all this happens because I really need treatment so badly and like I said before… I can’t receive the lifesaving treatment that I so desperately need without the help of others because we can no longer afford it. If only the media would feature me… then my story would get out big time and perhaps I can get the attention that I need to bring in some really big donations. In the meantime, I really hope that people are spreading the word of my website and alerting people of my condition because it is so very important and I am so running out of time. I am also hoping that she will have luck with getting the owner of the hyperbaric treatment to do the treatment gratis because even though it isn’t 100% proven to work, it is worth a shot. I am really going downhill fast and unless something works soon, I will really not make it much longer. Like I said before, I really have tried so many things in the past that has failed that we are at bottom of bucket. This is something that can potentially help and something I never tried. So I am really keeping my fingers crossed that all this will happen and happen soon. After all, I am so young and really don’t want to die. I have too much to live for.
In the meantime though, I have been doing terrible. My disease is really getting worse and I am suffering so much. Due to the paralysis of GI tract, I cannot move ‘air’ or ‘gas’ through and as a result, I am becoming so distended and bloating like crazy. I keep walking around unable to breathe because I am so bloated and distended. I feel like I am 9 months pregnant and ready to give birth. I keep saying how I need someone to ‘pop’ me, but of course that isn’t going to happen. Something really needs to be done because not only am I suffering so much in in pain because of all this and so uncomfortable, but it is shutting down my organs too because all this pressure of the air and gas is putting added pressure on my organs and shutting them down in addition to everything else. It is also setting off my whole autonomic dysfunction as well as exacerbating my illness too. It is like a never-ending cycle because one thing just causes another. It is just nonstop.
My dad keeps saying to ‘hang in there. Hopkins will be here in no time!” But in reality it is still 1 1/2 weeks away. We are planning and hopefully leaving on Sunday, August 18th. However, we still need lots of financial help in order for this to happen. In addition, with all the complications that always happen to me, who knows if something won’t happen that will end up delaying the surgeries? Even though we are planning on going and hoping to go… I don’t count on it until my body is on the plane and I am physically there.
Well… I guess that pretty much sums everything up about all the news that is occurring. I guess you can say that there is never a dull moment in my life. I just wanted to share the big news of what is happening so that it doesn’t all build up or anything.
Thanks again for taking the time to read my blog and for supporting me. I really have been having an extremely difficult time lately (more so than ever) and I can’t tell you how much knowing having your support means to me. Just knowing that I have your backing is really helping me get over the bumps in the road. I really can’t thank you enough. Please continue all your prayers because without them, I would not here today. Please also continue spreading awareness of my website and alerting people of my illness because not only do I need funds so that I can receive the very lifesaving treatment that I so desperately need, but I want to leave an everlasting mark in the world and therefore, I want people to become familiar and knowledgeable with my illness. I want people to learn about an illness that is so unknown as well as to realize that they should appreciate life and never take life or anything that it has to offer for granted because in an instant it can take anything (even the most simplest thing such as eating) away. I also want to show others that even when the cards are down and you are dealt with so many problems, it is possible to overcome and win! You should never give up because even though you might be ‘down,’ you are definitely not ‘out!’ I might have lost a couple of battles, but I definitely haven’t lost the war. I am determined to overcome this illness so that I can become the doctor that I so desperately want to become so that I can help others in this world.