Just figured that an update was needed because it has been awhile and so much has been happening. I have wanted to write earlier and let you know all that is going on, but the truth of the matter is that I am getting incredibly worse and to be honest it has been ‘touch and go’ these last couple of days.
It hasn’t really been good these last few days. I am not doing too well. So if this blog is a little mishmash… please bear with me because I really want to try explaining all that is happening, but I must alert you ahead of time that it is hard to write and my brain isn’t functioning at 100%.
To begin with… I am really doing horrible. I know how I am always saying how I am suffering, but to tell you the truth, the suffering has been worse than ever lately. When my dad and the doctors say that I “really belong in a hospital,” they really are saying the absolute truth! However, I am still trying to push on and hold out because I don’t want to spend my last days in the hospital and die in the hospital, and I also have family pictures that I want to take tomorrow, which are so important to me. I really want my parents to have something to remember me by in case something should happen, so these pictures are incredibly important. They are being taken tomorrow, so I really don’t want anything to interfere or make me miss this opportunity. I’ll explain more about them later.
But first off, let me tell you that I am not doing too well. I really belong in the hospital like I said before, but I am continuing to push forth and hoping I can make it without going. After all, it isn’t like I can go to any hospital and it isn’t like we have the funds that to do this either. I need massive treatment immediately and unfortunately, the treatment that I need is extremely costly and we cannot afford it by ourselves. That is why we are really hoping that people like you will help to either donate or to at least help spread the word that “help” is desperately needed because without it, I am definitely not going to make it much longer. I really need to get to a hospital like the Mayo Clinic or Stanford or even the out of the country coma so that I can receive the treatment I need to survive. I need either the intensive ketamine coma immediately out of the country, or I at least need the multivisceral transplant, which I am now too sick to get and I need to get tubes placed in me in order to help get me strong enough and in a hurry so that I can get that transplant to save my life. I need that transplant more than ever, but unfortunately, I am too sick now to get it and survive the transplant. That is why they need me to go to a hospital such as the Mayo Clinic or Stanford so that I can get tubes and other treatments so that I will be able to get stronger and be able to get that lifesaving transplant. But unfortunately, everything is extremely costly and we cannot afford it. We cannot even afford the current ketamine comas/infusions and the medications that are just trying to keep me going currently. We even had to stop the hyperbaric treatment because of lack of funds. It is a shame that it all comes down to the green paper dollar because my life is hanging in the balance and I am literally hanging on a wire that is ready to snap.
I really belong in a hospital and to tell you the truth, the doctors really wanted to put me into the hospital this weekend. My bloods are extremely low and I can go into cardiac arrest and have an arrhythmia at any moment. They are the lowest they have ever been. They are so low that the doctors said that I need “emergency treatment!” Yet, I am here at home hoping and praying that I am going to make it through this because I am a fighter because we cannot afford to go for the needed hospitalization and the needed treatments that need to be done because it isn’t so easy. Due to my extremely medically complicated illness, I can’t just go to any hospital. I have to go to a hospital that is able to handle me, which is Stanford Hospital in California or Mayo Clinic in Minnesota. Hopkins might be an option, but it isn’t the greatest.
Something is definitely going on and we don’t know what. I told the doctors that something was going on and when the bloods came back so low, I told them that they should have listened to me. I knew something was wrong because I could just feel it. We aren’t sure if the changing of one of my meds though contributed to this problem, but it was determined that I can’t really be changed from any of my meds until I get stronger because my body can’t handle these changes.
Besides everything that is happening, we decided to change one of my medications because I am really suffering in pain more than ever. Even though it was still a ‘morphine’ drug, it was a different drug and probably had a different mechanism of being released. Whatever the reason, the doctors think that the switch of the medicine caused my body to go into severe withdrawal and cause my body to shut down. When they switched me from one drug to the other, I gave everyone such a scare and it was determined that until I get stronger, nothing is going to change.
We thought it would have been ok because it was still morphine even though the current drug that I was taking was a once a day drug and the new drug that I was being placed on was twice a day. However, like I said before, each drug is still different in the way it is delivered and such and with my extreme paralysis of my GI tract and the way I absorb medication, I probably couldn’t absorb the new medication in the same way as the old one. Therefore, it contributed to severe withdrawal and really caused my entire body to shut down. I am lucky that it didn’t kill me. My parents said that they were never so scared for me. Even I was scared!
I don’t know what happened or how much the switching of the drugs had to do with it, but I started to urinate frequently, which was out of the norm for me. About 2 in the afternoon, I collapsed on the couch and my parents couldn’t wake me up basically until 8 AM the next morning. I was going through extreme autonomic dysfunction, as I couldn’t regulate my body temperature. I was going through nite sweats, freezing, etc. I was having such out-of-body experiences and experiencing dreams that you wouldn’t believe. Whenever they tried to wake me up, they were having an entirely difficult time doing so because they just couldn’t get me up. They really thought I wasn’t going to make it or that something was going to definitely happen that night. No one slept that night, as they kept checking on me. We think the switching of the drug might have had something to do with it because when they did manage to get medicine into me about midnight, I went back to taking my old morphine instead of the new one. Once the old medicine got back into my system, some things started to quiet down. I was definitely certainly not out of the woods, but at least some things did quiet down to a point.
It really gave everyone a scare and made me wonder how I would ever come off of these drugs because I don’t want to be on these drugs for the rest of my life. After all, I don’t want to be a ‘druggie’ all my life, you know? My internist said that until I get stronger and get some weight on, my body can’t handle any of these changes whatsoever, and therefore, it cannot happen. They think that because I am so sick, so low in weight, and my BMI is so very low, they think that I can’t tolerate the slightest change. But they are hoping that once I get stronger, I will of course be able to tolerate these changes.
I was also getting intensive spasms throughout my entire body so I knew something else was going on. When I was taken to the doctor, the doctor ran my bloods and it was determined that my bloods were tat their lowest point. I really needed to be in the hospital, but like I said before, I really didn’t want to go for various reasons. First, we really can’t afford it because I can’t just go to a local hospital and the treatment that I need is extremely expensive. Second, I wanted to take my family photos that are being taken tomorrow.
We are taking family photos tomorrow and they are so important to me. I really want these because if and when something happens to me, I want my family to have something to remember me by, I have really been looking forward to these pictures and I really didn’t want anything to ruin them. I was fortunate for a great photographer to be so willing and generous to donate his time and talent to take our pictures and create lasting memories. To think… these are even the first time we are even having a family picture really formally taken. I am definitely going to cherish these pictures forever and ever.
To get ready for these photos, they cut my hair and changed the appearance. They like gave me a whole new look so that I can look ‘pretty.’ I was so fortunate to the Sorell Salon because they really went beyond the call of duty to extend a helping hand to me. When I went there, they made my day there one amazing day, as I was treated to an amazing manicure along with getting my hair colored with an outstanding colorist and getting an outrageous haircut. I really honestly ended up feeling ‘pretty’ for a change. It was one great day!!
I can’t wait for the pictures to be taken tomorrow. However, even though all that was done to ‘make me over’ and transform me, we really still needed to be ‘done’ the day of the photos. So my mom and me are getting our makeup and hair done tomorrow so that we can get our pictures taken. We never ever had anything like this before. I can’t wait to see how the pictures come out. Unfortunately we didn’t really have anything to wear though because we really don’t go out anywhere, so we are just going to wear something casual like jeans or something. But it will still hopefully be nice. The photographer is coming to my house first so that we can take pictures with my dog and then I believe we are going to head to the park. Thank goodness that tomorrow is supposed to be a nice day. I am so excited and everyone is going to look so nice. Even my dog is going to look his best, as we gave him a bath today! I’ll def let you know how the pictures come out and of course post them once they are done.
To keep me going and hopefully keep me out of the hospital, my parents have been trying to pump me up as much as possible with my heart meds and constantly giving me Gatorade and my ice pops (which have my heart meds in them). A great friend even brought over a heart defibrillator/heart start machine to keep in the house in case my heart stops. This way if there is an emergency we have the ‘paddles’ right there and hopefully my parents can restart my heart. Gosh… you know things are really bad when you get all this type of equipment into the house!
On top of everything else, my osteonecrosis is also acting up. As if I wasn’t in enough pain already, I felt something really bad and painful in my mouth. When I looked inside I was shocked to see how bad my osteonecrosis had become. My entire left side of my palate basically caved in and the entire jawbone is basically protruding through. It really gave us a huge scare. Dad is making an appointment with the surgeon hopefully for this upcoming week, but in the meantime, I feel like a shark because I have my teeth and then I have these sharp pieces of bone protruding out from everywhere on the side of the palate. It is just horrible and I don’t know what is causing all this.
My stomach is getting a lot worse and it is getting extremely difficult to even eat anything. I am getting a lot of blockages and I am very uncomfortable. The doctors want me to stop eating and drinking permanently forever, but of course in order for that to happen I need that special procedure at the hospital to have the tubes put in me and the central line first. So everything is really on the fence because we are at a standstill since the funds have basically ran out and it will be extremely difficult for dad to spend an extended amount of time with me at those hospitals and away from work especially when the bills are so high nowadays. So I just continue to hope and pray for just a miracle.
Other than that… nothing else is really doing. But then again… isn’t all this enough? I am trying to still stay positive, but it is getting extremely difficult. I got the new book by Stephen King called “Doctor Sleep,” which is supposed to be the sequel to the “The Shining.” I loved that book and movie, so I am hoping that the sequel will be just as good.
Dad is hysterical because he just got the iPhone a little while ago. He finally left the flip phone and joined the technological age. It has been hilarious trying to get him used to learning and working the iPhone because he had no clue how to work the iPhone. He was making progress but then when I switched him and updated his software because they came out with iOS 7… All progress was lost. Before this now, he never even texted. So you can’t even imagine how many times he does something to his phone and he has no idea what he does. He is like “Fallon… Help! I hate this phone!!” As much as he loves this phone he hates it because it’s smarter than he is. Thank goodness it has Siri because all he has to do is talk to it and it does everything for him. So at least it makes it easier for him. Thank goodness because I don’t think he would’ve been able to even make a call if he couldn’t say ‘call’ and it then called that person. Lol. He one time even called me on FaceTime and he had no idea how to shut it off. It was hysterical. I had to literally walk him through it.
Well… I guess that is about it. I am going to rest because I got a big day tomorrow and I am in so much pain. I can’t believe that it is already just about October already. The year is just flying by and the holidays will be here in no time. I just hope we aren’t in for a cold winter. That would be horrendous.
Thanks again for supporting me and encouraging me. I wouldn’t have made it this far without your support. It is so nice to know that I have such kind people behind me. Please continue your prayers and please continue to spread the word that HELP is needed because I desperately need it in order to save my life! I can’t do it on my own!!
Well… talk to you soon!