Figured that I would write and maybe it would not only allow you to know what is going on, but I thought maybe it would clear some things up for me as well as give me a way to ‘vent’ my thoughts and feelings out since so much has happened in the past few days and I am having an extremely difficult time dealing with everything. In fact, things have gotten so badly that I really don’t even feel like talking to anyone. For that to be the case (since I am a very open person who LOVES to talk and be with people), things have to be really bad.
I really haven’t felt like talking or being with people because my life hasn’t been doing too well. I am suffering in agony more than ever and I didn’t get the greatest news in the past few days. Plus, I need treatment more than ever, and unfortunately there seems no way possible to get it because of the money that is needed to get it. Since I don’t have the funds to have the necessary treatment that I desperately need, it appears that my life is really in jeopardy… more than ever. I always knew that without treatment that dying was a REAL possibility. However, I always hoped deep down that something would happen or turnaround that would enable me to receive the necessary treatment that I needed. I always hoped that something would happen that would enable me to raise the funds needed for the necessary treatment despite how poor the responses to my website and all my other efforts have been. I have tried so many different ways to raise money and even though they all have basically failed, I have continued to try new methods and still held onto hope that something would turnaround and I would be able to raise enough money or at least a significant amount of money that would really be helpful to help me with my treatment and save my life. Even though I did raise close to $10,000, it really isn’t a lot at all. Plus, it took over a year to do this so the amount of bills that occurred at this time far outnumbered and exceeded that amount. It was one thing if I raised that money in a short amount of time because it would really help pay for treatment, but even though it was helpful, it isn’t as helpful as one might think it could have been since it took so long to raise the money and how much I have went through during that time.
I need treatment more than ever at this time and without it, I am surely not going to make it much longer. I never thought I would be at a stop in the road where I am at a standstill and I can either go either way. Without treatment, I am surely going to die soon for sure. With help… of course there is hope and help. But unfortunately, there is no way that I can get the treatment by relying on my family. My family has done as much as they could and unfortunately we can’t pay anymore. So, as much as we would like to pay for further treatment to save my life, we just can’t do it. It is the hardest thing for me to know that I am going to suffer and die because my parents can’t afford it. I don’t want to die, but I don’t blame them for not being able to pay for treatment because they have certainly done enough. You can only get so much from a person. It is also taking a toll on them because it isn’t easy to watch their daughter go through this. They are the ones who are supposed to die first. They wish they could take all the pain and suffering away from me, but they can’t. Parents are supposed to make the lives of their children better. However, in my case, they just can’t despite how much they desperately want to. All my dad can say is “I am so sorry.” I see the look in his eyes and I know how desperately he wants to do more and how much it hurts him that he can’t.
I only wish things would have worked out for the better with the fundraising. I only wish that more people would have taken notice to my pleas. I was never a ‘beggar’ and for me to actually constantly ‘beg’ and plea for money, it was not easy for me to do. However, I was just so desperate for the funds because I knew that without the help from others, there was just no way I was going to be able to continue the treatment that could very well save my life. I am only 31 years old and have not yet begun to live life. I have so many dreams and aspirations, and I really don’t want to die. I was robbed of life at such a young age by this disease, and it was my dream to be able to have my life back and to live a normal life. It was my dream to be able to eat again, be able to have a family, be able to walk again, become a doctor, be able to take a shower, be out of pain and suffering, etc. But, I guess all those wonderful wishes and dreams will never come to pass.
Things have gotten worse than ever lately. I am really deteriorating and unfortunately we are at the point now that if nothing is done right now and urgently, we don’t know how much longer I am going to be able to make it. I desperately need treatment, but like I said before, we don’t have the funds. We tried to look into upgrading our health insurance because it would ‘help’ pay for treatment because at least they would pay like 70% after we meet our $2000 deductible, but it just isn’t possible. We already pay about $3000 in health insurance a month and they want another $700 just to do that. We can barely afford the $3000 now, there is no way that we can come up with the extra $700 a month because that is like $8400 a year more (not including all the additional funds that we have to come up with like the copayments, medicines, etc. We have copayments for everything including copayments for doctors, medicines, radiology exams, etc. Just being an inpatient in the hospital costs me $150 a day for the first week. Just like every radiology test such as a CT scan or MRI is a $100 copayment and so is every procedure that I have). It just continues to add up and up and up.
I was never a ‘crier’ but that seems to be all that I can do right now because unfortunately all we are doing is hitting brick walls. I need help and help now, but unfortunately there is no way I can get it. First of all, I need help for my osteonecrosis. It appears that I have jawbone death. However, I can’t get the necessary help that I need because all the surgeons that deal with this illness don’t take my insurance and to have to deal with this illness, it will be quite expensive. Any kind of surgery is really expensive, but this surgery will be really expensive considering all that they will have to do. I will have to undergo numerous and various surgeries, scans, bone grafts, etc., which will all be a lot of money.
If you don’t know what osteonecrosis is and jawbone death is, it is when the bones are actually dying. Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The bone starts to die and may break down. They aren’t quite sure what the cause is, but they are pretty sure that is related to the bisphosphonates that I have been taking once a year for my illness. Gosh… this neurological/autoimmune disease really caused such a host of problems that it is unbelievable. It affects anything that is on the neurological system, which is essentially everything. It caused me to develop such a severe case of osteoporosis, severe gastroparesis, heart problems, a brain tumor, etc. Talk about a illness that doesn’t stop ‘giving.’
Anyway, every year since 2009, I have been undergoing a very potent infusion of bisphosphonates because my bones have become extremely fragile. In fact, my doctors are always scared that I am going to get a life-threatening fracture or something else. So, the doctors have be go for this very potent infusion that is only supposed to be done like once every 2 years, but in my case, I need it every year because I am so bad. People might wonder why I am taking these meds if they cause this problem. First of all it is a rare problem to occur. Second of all, given the risk of osteoporotic fracture, and the low risk of the jawbone death associated with potent antiresorptive therapy use, the benefit of preventing osteoporotic fracture clearly far exceeds the risk. That is why the doctors are continuing me on it,
Well, it appears that recently my bones in my mouth have been protruding through my skin. In fact, I just went to the doctor today, and in the past couple of weeks, it has gotten extremely worse. At first we thought it was just lesions. However, it was concluded that it was actually bone coming through and there were lesions around it. It was concluded that my bone was actually dying off and coming through. However whereas it was only on one side before, it is now coming through on both sides of my face now. You can actually see the mandibular or maxillary bone through the lesions in my mouth.
I must say that even though it is quite disgusting, it is quite fascinating to know that I have bones coming through my skin. However, it is quite painful to tell you the truth to have this happen. Due to my extreme gastroparesis and inability to swallow, it is really hard to eat and drink as it is, but with this bone coming through in my mouth causing me extreme pain, it is making it even more impossible to eat or drink. This is not good because I already weigh so little (in the 60s). I really can’t afford to lose any weight whatsoever. I am having the hardest time eating anything because of my mouth… even ices, which is not good especially because my heart meds are in them.
The pain of this occurring is excruciating. Eventually the bone will die so much that it will break off. I really need to see surgeons that can help, but not many really deal with this illness. However, the ones that deal with this illness don’t take my insurance. When I asked the doctors about the cost of the procedures, the cost is just astronomical. I found this one treatment where the surgeon uses a new method to get rid of the dead bone and allow new bone to grow back. After the CAT scan to diagnose the problem, patients first take tetracycline for two weeks. Once in the operating room, the doctor exposes the problem bone and shines an ultraviolet light on it. Tetracycline sticks to bone and lights up under the purple light. The doctor claims that “Bone that doesn’t take it too much in certain areas we remove, and bone that doesn’t take it up at all, we remove because it’s dead.” The healthy bone is left in place to re-grow.
Yet, like I said before, all the surgeons that can possibly help me do not take my insurance. When I speak to them, all they can say is “I am so sorry. I feel so bad. I wish I could do more.” I just don’t understand it. If they feel so bad and wish they could do more, why can’t they give me a ‘break’ and charge me less? So now besides suffering and being in pain 24/7 with my neurological disease/autonomic dysfunction, as well as with my severe stomach and intestinal problems, I now have to deal with the pain in my mouth as well. The pain is so bad that I can’t even always open my left eye.
So I have been hitting a brick wall with getting help in receiving treatment for my osteonecrosis and as a result, I am only going to suffer more and the bones are only going to continue to worsen and die more. But in the meantime, I have been fortunate that my dentist has been amazing and trying to help in any way that he can. He has tried numerous ways of trying to help and has even tried to get me gels that only dentists can use just to see if it will help with the pain and help heal with it. He has been going way beyond the call of duty and has been researching my illness and trying to do whatever he can. He even dropped off the medication at my house today after he ordered it especially for me. I am so thankful for him. More people should be like him. He is definitely the best dentist in the world. In fact, his whole entire office staff is just wonderful. I love going there because they are so very nice to me. It is the one place where I feel comfortable and I actually feel like I can forget about all my ‘problems.’ They always find ways of making me laugh and putting smiles on my face. In fact, one of the assistants even buys me cakes and napoleons to ‘fatten’ me up. My dad loves it when I go to the dentist because he knows it is good eating that night. They are just one-of-a-kind.
Well, it isn’t just my mouth that is worse. I got bad news about treatment for my overall neurological/autonomic condition. I found out that the ketamine coma study out of the country was suspended. I desperately needed to go out of the country to have it done because I needed an amount of ketamine that was not FDA approved. Even though the procedure was extremely radical and dangerous, I was really hopeful that it would help since ketamine is a NMDA receptor and has a the potential to ‘cure’ my illness.
For me, ketamine isn’t just a street drug for me. They just don’t call it “special K” for nothing. It really is SPECIAL for me because it has the potential to really help me. I experience such searing pain that I take over 50 pills daily to help with all the pain and suffering of my autonomic dysfunction, neurological disease, gastroparesis, etc. However, ketamine has the potential to stop all this and to potentially cure me if I am given a high enough dose out of the country. In that treatment out of the country, ketamine is infused intravenously and continuously while patients are supported by a ventilator – and are virtually dead – for days. During this time, the ketamine resets the link between the pain sensory neurons and the brain. The brain is like a computer because during the coma the doctors basically turn your computer off so you’re not having any pain. When the brain is turned back on, the pain system is “rebooted.”
Yet, due to unknown reasons, I was notified that the coma out of the country was suspended. I am really upset because I was really hoping that it would be able to do help me. It was kind of my only hope out there because no matter what else I tried, it all failed. Yet, now all I have left is to go south to Florida for the ketamine coma there.
Even though I do get ketamine comas in New York, it is not as potent and not the same as I will be given down in Florida. Whereas the one I have in New York is only for the day, the one in Florida will be for 4-5 days. Yet, at this time it is my only hope out there and therefore, I have no other choice. Although it won’t ‘cure’ me because it will not be as intensive as the one out of the country, it does have the potential to make a HUGE difference in my life.
Even though it will not completely ‘cure’ me, it will make a significant impact on my illness and will potentially ‘buy’ me a lot of time hopefully. It really has the potential of reversing A LOT of stuff that has happened and making the pain and suffering a lot better. I desperately need this procedure more now than ever because not only am I suffering in agony with the pain, but I also need them for the related stuff that is going on with my GI problems and the lesions in my mouth. We are hoping that ketamine will reverse or help with the paralysis in my GI system, and we are also hoping that the ketamine will heal the lesions and potentially cover up the bone that is coming out in my mouth. Unfortunately with my illness, I can’t heal and the lesions just continue to spread. However, ketamine has been known to dry up and heal lesions in a high enough dose (the dose in New York is way too low for this all to occur).
Yet, like always, we run into a huge problem because in order to get this coma to potentially save my life and buy time, we need to of course pay out-of-pocket for it and it isn’t cheap. They want close to $15,000 for the coma and then I have the boosters and the other return treatments. In fact, whenever I go to visit him to talk to him for an appointment, it costs me $1000. I don’t know how we are going to afford this.
As of now, we are scheduled to see the doctor in Florida on May 9th. I am really hoping that we will find some way of coming up with the funds because I can’t suffer like this anymore. The pain is getting worse, the lesions are getting worse, I am twitching more than ever, my memory is getting worse, etc. In fact, I can be literally standing up and then get a twitch that sends me flying. I also keep having out-of-body experiences and when I come back to consciousness, it like takes me awhile to figure out what happened and where I am. It is the weirdest and strangest thing and to be quite frank with you… it freaks me out. I really think there has to be a reason for it.
I can literally feel my body dying off. It is the worst thing you can imagine. I just feel so weak. You can’t imagine what ‘dying’ feels like until you experience it. It has gotten so bad lately that I lay at night in my bed wondering if I am going to see morning. I even sometimes hope at times that I don’t see the morning because I know that I will be in a better place. I just can’t take it anymore. It’s so sad and hurts me that everything deals with money and we don’t have it. My life depends on this and unfortunately I am watching myself suffer and die because I can’t afford the necessary treatment that I need.
I am also scheduled to go to the Mayo Clinic on May 27th. Like I have stated previously, they are a top hospital in the country that deal with the rarest diseases and the cases that can’t be helped elsewhere. I am hoping that they will be able to help me with my GI system. But, they want my off all my meds for 2 weeks prior to seeing them and I don’t know how on earth that is going to happen. Even my doctors have said that it is literally impossible for that to take place because it is way too dangerous. They said that I am on way too much and have been on them too long for that to happen. They said that I will go into seizures, coma, and even death if I do that. So I don’t know what is going to happen.
I really need help and help urgently. I am literally dying and don’t have much longer because my entire body is shutting down. I don’t know how else to raise money or how else I can ask people to donate. If you have any suggestions, I would really appreciate it. Time is really of the essence and like I said… if something isn’t done fast, I fear that I won’t be here much longer. I just can’t take the pain and agony anymore. It is just too much to bear. I already want to take a knife and cut out the bones in my mouth already that are protruding because they are so very painful. I just wish there was a way to get treatment so that I not only get better, but at least I am out of my pain and suffering. I just can’t take it anymore. I am literally climbing the walls.
Missy knows I am suffering more than ever and really getting bad because she won’t leave my side. She follows me all over the place and doesn’t leave me for a minute. Her birthday is coming up at the end of the month. I can’t believe she is going to be 9. I only hope that nothing ever happens to her because she is my LIFE!! She is literally my BEST friend.
The change in weather also isn’t helping. In fact it is really exacerbating my condition. I hate when it is the “in between” weather. I can feel the slightest change of weather because I am so hypersensitive. My parents joke around how I am like a thermometer because I can even tell you the exact temperature. It really is amazing because I can feel the slightest change… even a degree. I can’t stand to have the windows open because I can’t stand the feeling of the outside air. It makes it difficult to breathe and stirs up the autonomic dysfunction. It also hurts me to have the windows open because the breeze through the windows whip and hit my skin. I need either the heat on in the house or the a/c, but it is the weather that is like the “in between” weather because it is too warm for heat and too cold for a/c. I hate making my family suffer because I know they would love to have the windows open and get fresh air into the house, but I just can’t tolerate it.
I just set up my new humidifier. I need it for my breathing and autonomic dysfunction, especially when there is the change of weather and when the weather is in the “in between” state. It kind of makes it a little easier to adjust to the in between state because it is a “cool” mist humidifier. This way I can deal with the time before the a/c goes on to a point. Yet, when we set up the humidifier yesterday, we found out it was broken. So I had to order a new one and it is suppose to be coming tomorrow.
I am trying to keep my mind occupied so that I don’t think of the pain, but it is literally impossible. The pain is just too much to bare. I can’t wait til Monday because my favorite author is releasing her new book called “Wedding Night.” I love the author named Sophie Kinsella, but she only releases one book a year.
In the meantime, I have been busy playing a new game on my phone. I was told about a new game called PANDA JAM today and have started playing it. Apparently everyone new about it before and I am like one of the last to know about it. It is a pretty cool game.
I also have an appointment on Monday with a doctor for a new parking permit. My dad always says to me “It always pays to have you around” because he gets away with so many things with me such as cutting lines, parking in handicapped spots, etc. If he said it then, he is definitely going to be saying it now because I am getting a parking pass where I can literally park ANYWHERE I want. Can you believe it? I know it stinks to be sick, but at least this is one good perk. The permit allows the driver to park at most curbsides on City streets including in all No Parking zones (except those marked as taxi stands); in “No Parking” or “No Standing” spaces authorized for doctors, press, diplomats and government agencies; at metered parking without paying; in “No Standing, Trucks Loading and Unloading” zones except for specified restricted hours. So at least this will definitely come in handy when we go to doctors and such because a lot of times we can’t find parking and we have to walk blocks or wait forever for a spot since basically all my New York doctors are in Manhattan and there is no parking there.
Well… I am going to get going. I will write more when I know more. Like I said before though, if you have any ideas on how to raise money, please let me know. If you can please spread the word that I desperately need help… I would appreciate it immensely. Any help that you can do would be great and much appreciated. Thanks again for always being there for me and for supporting me in the meantime.