I figured I would write tonight and update you on all that is happening because so much lately has been taking place and there is so mu h new stuff to be known. I am not doing well lately, which is one of the major reasons why I don’t write as much as I would like.
I really have changed lately. I am in so much pain and so weak that I literally can’t get off the couch. I have been extremely weak that it is really hard even staying awake. But it isn’t like the ‘sleep’ gives me a break from anything. I pass out from all the pain and everything that is going on and even though I may be technically “asleep,” I still feel the pain radiating through my body. It is constant torture. The only thing it is doing though is really scaring my parents because they are having a hard time keeping me awake. Between the way that I look and how I am acting, I am really scaring everyone. My dad constantly checks on me because he says that he has never seen me so bad. Even when he is out working, his mind is constantly on me and therefore, there are numerous times that he will stop his work to just drop by the house to make sure that I am resting peacefully on the couch and nothing seriously is wrong. I keep reassuring him that I will be “OK” even though I don’t know anymore what is honestly going to happen.
I definitely know that things are different. I definitely know that I am deteriorating. I can feel my body weakening and everything, but I am still not giving up. I am still fighting. I may have lost some battles, but the war isn’t over as of yet. So… I just gotta build up my arsenal and win some battles so that I can win this war. I am not going to lose this war.
Lately I haven’t been doing too well, so I have been down but certainly not out. I am in severe pain as I have told you and my bloods are not doing well at all. The labs and hospitals are constantly calling my doctors telling them that I am listed in the “critical” values when I go for blood tests, but I am still hoping and pushing that I can overcome this. It has been recently noted too that I am in liver failure among all the other things that are going on.
Well, I mainly wanted to write to let you know what is going on. I just received word that I am going to be undergoing surgery in less than 2 weeks for the osteonecrosis and all the problems in my mouth and feet and such. It is going to be a mega surgery, and I am really nervous. I am really scared also because I really need this surgery and the insurance company does not cover it. Therefore, I don’t know how on earth we are going to afford it. I really need all the help that we can get because I honestly don’t know what is going to happen if we can’t receive any ‘help.’ My real fear is that even though everything is scheduled because it has to occur that it will have to be canceled because there just aren’t enough funds for the surgery. So if you can please donate or at least spread word that donations are very much needed, I would really appreciate it.
I am really nervous that I won’t be able to have this surgery because it really is dependent on the donations that I receive since it will be very expensive and we can’t afford it by ourselves. Unfortunately, the insurance won’t cover most of it. The surgeon isn’t covered nor is the surgery itself. The only thing that is covered is the actual hospital stay. However, just the surgery itself is going to be astronomical between the cost of the surgeon fees and everything else. Plus, just because the insurance is covering the hospital, I still have all these copayments to pay as well. I will have to pay $150 per day that I am hospitalized as well as $100 per each x-ray and procedure done as a copayment besides the amount that isn’t covered (the surgery, the surgeon, etc.). So clearly that will add up to be extremely costly as well. I just don’t know how on earth this is going to work out! I hate thinking that the stupid green paper is more important than a person’s life!
Like I said though, I am scheduled to have surgery in less than 2 weeks and therefore, the next week or so are going to be so insane. I am having surgery for the osteonecrosis that is occurring. Then I am also having surgery for all the nerve exposures because all my nerves are exposed especially in my mouth. My teeth are also disintegrating literally and need plenty of root canals, but unfortunately I cannot be put under regular novocaine because it won’t hold me. Therefore, while I am under GENERAL anesthesia, they are going to take care of that as well. In addition to all those problems, I am having problems with my legs as well. I am having callouses on them that have to be removed and seeds in them as well that have to be dug out. So while I am under anesthesia, they are going to be doing that as well. It is going to be one HUGE day of surgery from head to toe.
I am going to be having so much surgery during that day, but hopefully I will be better when the day is done. The surgery is supposed to last for about 5-6 hours. The surgeons are pretty scared about what is happening with me and with my overall situation and therefore, they have been trying to take every precaution and trying to get the ‘teams’ prepared in the hospital to take care of me. They don’t want anything to arise unexpectedly because they know that they are already going to have their hands full.
The doctors know that I am an extremely complicated case that is not seen on a regular basis. As a result, my surgeons want the entire hospital to know what is going on with me in case a crisis should arise because it is very possible that something will occur because of my complicated condition. We really have our hands full between all my health problems, which include the extremely low weight, low blood pressure, autonomic dysfunction, discoloration, gastroparesis, poor bloods, organ trouble, etc. According to the doctors, “I am one sick girl and they need to know exactly what is going on so no unnecessary surprises get sprung because they will have enough on their plates without that stuff.”
As such, my surgeons have been simply wonderful. They have been talking to everyone in the hospital and having meetings with everyone such as all specialists that will be on the ‘team’ including anesthesiology, nurses, doctors, etc. He is telling them my entire medical history and telling them exactly what is going on and what to expect since they really never had a case like me before. I am fortunate that I will be able to be able to have this surgery in the area, but on the other side of the spectrum, this hospital needs to know how to care for me because I am going to need some extra TLC. The surgeons have me going for all my clearances and have me going for extra tests such as extra cardiac tests and pulmonary tests so that they can thoroughly know exactly what is happening with me and minimize the amount of surprises that can happen. Even though they have had meetings with all the people to explain my case prior to these tests and such, they are going to have more meetings right before surgery to further go over all the tests so that everyone is on the same page.
I am really nervous because it is going to be one big day. I mean going through 5-6 hours of surgery is no small stuff. I just hope that everything will be ok in the end though. As of right now, I am scheduled to be undergoing the big surgery on Tuesday, November 19th. So… it is basically around the corner. The doctors are trying to get it in as soon as possible because of how poorly I am doing. I am really going downhill quickly. I am getting really weaker, my bloods are dropping, my liver is failing, I am having a harder time clotting, my bones and teeth are disintegrating, etc. It is really imperative that something be done now rather than later. So, they are shooting and hoping that this day will work out (unless something like I get too sick to undergo the surgery arises).
So… the next week or so is going to be insane. I have to undergo all these tests and clearances. Like I said before, the doctors are making me do extra tests and such because they want to know as much as possible about me because they are going to really have their hands full with me. They are also going to be having meetings about me and the hospital is going to be learning how to ‘care’ for me because I can’t be cared for as a typical patient.
I am definitely not the typical patient, as I am very hypersensitive and will be in lots of pain after the surgery (even more pain than the normal patient). I can’t tolerate IVs because the lines literally burn up my veins. As a result, they will be having me on ketamine not only during the surgery, but afterwards as well. They are going to be giving me very high doses of ketamine because not only will it try to help with the pain since the most innocuous touch is excruciatingly painful for me, but it is going to try to ‘contain’ the illness because my illness likes to spread whenever there is ‘stress’ or ‘trauma’ to my body. This illness is already spreading like a wildflower and we can’t afford for it to spread anymore. We are hoping that the ketamine will at least help to keep it where it is instead of it progressing, which is a real possibility. I don’t even want to think of it doing that and getting worse. I would never be able to tolerate it. I am only hoping that the ketamine does the ‘magic’ that it always does.
With all the intense surgery that I will be undergoing and then the ketamine that I will be given afterwards, my dad will hopefully be spending the night with me. They are preferring my dad to stay with me overnight because he is the only one really who knows what is going on with me and who can speak for me. They want him to stay in case something should happen. This way he can explain to the nurses and doctors what is “normal” and what is not. I am really hoping that he will be able to stay because I don’t want to be left there alone. I am petrified of hospitals. I know it sounds weird especially since I have been there the amount of times that I have… but the truth is that I am becoming more and more petrified of them. I really hate being hospitalized. But they are hoping that with my dad being there that things will go more smoothly and I will be able to get more of the care that I need because he will make sure that I get it. After all, they really never had a case like me before and aren’t used to someone like me. Just knowing that someone is there for me will be a great relief. I know my dad hates sleeping at hospitals because there is no place for him to comfortably rest, but I am hoping that he will be able to stay because I don’t want to be alone.
This surgery is really important because I am in soooo much pain. Not only that but the osteonecrosis is so bad and all the nerves are all exposed. Therefore, the slightest touch or anything will send even more pain than anything. I also am having trouble walking because of the ‘seeds’ in my feet, so that has to be taken care of as well. So… it really is a necessary surgery.
Besides this though, I am not doing well. I went for bloods today and my entire left arm is all swollen. As I am having an extremely hard time clotting, the blood never clotted and ended up bleeding all under the skin and such. I have such a large hematoma under the skin and there is all this swelling too. Never a dull moment.
I am also scheduled to see a new bone doctor on Monday. This doctor is supposed to be one of the best of the field. I really need a great doctor because I am really deteriorating in this area. My bones are so very bad and now with this osteonecrosis, we just don’t know what to do. My old doc refuses to give me the “reclaste,” which was the medicine that I took to strengthen my bones before and therefore, there isn’t anything left to take. My bones are really weakening and even with this powerful infusion of reclaste, they are still disappearing. Yet, they said that without the reclaste, it would have been a lot worse. My bones are so bad that the doctors are afraid that I am going to get a life-threatening fracture.
So I am headed to see this new doc because he is supposed to be one of the best in the field. We are hoping that he will have another option to help me since I can’t take the reclaste anymore because of the osteonecrosis. They came out with a new treatment called Prolia, so hopefully that will be able to help me as well especially since I have tried all the other treatments and failed them.
This upcoming week is going to be extremely busy because not only do I have all these appointments for the upcoming surgery and this bone appointment, but I also have another ketamine coma appointment on Friday. Gosh… that day can’t come fast enough because that is the only time I get a break from this illness.
Thanksgiving is basically around the corner and so are the holidays. I can’t believe how fast they are coming this year. I usually make Thanksgiving dinner, but with everything going on this year, I don’t know what is going to happen. I was already told by the doctors that I probably won’t be “up” to having Thanksgiving dinner. I just hope that I am home for it. I also found out that there will be no gifts during this holiday season because we really don’t have the money. I told my mom that it’s ok and understandable. Gifts aren’t important anyway… family is.
Well… I guess that is about it for right now. I think I summed it all up. Sorry if this is a little disorganized, but I am just not feeling well and I wanted to update you on all that is happening. Like I said earlier, I am expecting to undergo surgery on November 19th, but I really need as much help as I can from you and others because I cannot afford it on my own. If you can please spread the word that donations are very much needed, I would really appreciate it. Please pray for me because I am going downhill so fast and I need help so badly.
Oh, I forgot to add that I received word that one of my YouTube videos hit 2000 views. I am so excited. I just wish the donations would come along with it because I so desperately need treatments and I can’t afford them on my own. Even the littlest amount would be helpful. After all, a little here and a little there all add up.
Thank you again for all your help and support. I really appreciate it. I definitely wouldn’t have made it this far if it wasn’t for support of you. Well, until next time…