Hey. What’s up? Before anything… let me mention that I want to wish you “HAPPY PI DAY (3.14)!! Sorry I haven’t written in awhile, but haven’t been feeling really well. It has been getting harder and harder to write because I am rapidly deteriorating. Definitely a big difference in me in such a short amount of time. I barely get out of bed. It’s horrible. My life consists of trying to hold on as much as possible, going for procedures/surgeries to work on my colon every week, and also to have my ketamine coma infusion too every week, which has had other stuff added to it such as injections into the occipital lobes and blocks into my spinal cord because of how bad things have gotten. In a way I am thankful that I am getting put under anesthesia twice a week because it’s the only time I am not suffering.
Hey. What’s up? Sorry I haven’t written in awhile, but haven’t been feeling really well. It has been getting harder and harder to write because I am rapidly deteriorating. Definitely a big difference in me in such a short amount of time. I barely get out of bed. It’s horrible. My life consists of trying to hold on as much as possible, going for procedures/surgeries to work on my colon every week, and also to have my ketamine coma infusion too every week, which has had other stuff added to it such as injections into the occipital lobes and blocks into my spinal cord because of how bad things have gotten. In a way I am thankful that I am getting put under anesthesia twice a week because it’s the only time I am not suffering.
Things are really getting tougher than ever. But at least I get relief twice a week when I get put under for the ketamine coma infusion and then when I go for the procedure for my colon. I go every week for both, which takes not only a huge toll on me even though this is the only time I actually get out of pain, but on my dad as well because he has to find a way of working everything into his schedule since he takes me for these procedures. These procedures literally take up the entire day and therefore, it makes it harder for him to work.
However, I feel bad for my dad because it’s taking him so much away from work and we are really suffering because of that. The bills are just snow blowing out of proportion. We can’t pay our mortgage or utility bills and even have difficulty putting food on the table. We can’t even afford my day-to-day treatment anymore, which means getting medications is really a tough ordeal. I desperately need help especially since we are scheduled to leave for Cleveland shortly. My dad has been working harder than ever trying to fit everything in because he works 7 days a week before and after each procedure and basically around the clock. He is so tired and I feel so bad for what I put him through. But, he keeps doing this because he is trying his best to get the funds so that I can get the treatment that I desperately need, as it is extremely expensive.
I am so worried about my dad because of how much he works, as he works himself ragged and because he is no youngster. If it wasn’t for him taking me for these procedures, I would barely see him because he is always working. He barely sleeps anymore because there is no time and he is really running himself so ragged that when he does come home, he just basically crashes. He is so tired that even when I go for my procedures and I am “sleeping,” he crashes at the doctors’ office. This was never like him. I only hope that nothing happens to him because I would never forgive myself. My dad is like my best friend. He means the world to me. I feel so bad for what I put him through. But he feels so bad that he can’t take this illness away and that no matter how badly he tries… he just can’t seem to make enough money to pay the bills and get me the medical treatment that I desperately need to save my life. He constantly says, “he would take the disease away for a minute that he could,” but I always tell him, “You would give it back instantly because you wouldn’t be able to handle it.” I keep thinking that there are higher purposes for my suffering and for what I am being put through, as well as that people aren’t given things that they can’t handle. Yet, on the next breath as I continue to worsen, I keep asking myself “when is enough enough? How much more of this can I actually handle because I am basically at my breaking point.”
Now besides going for just ketamine comas, I also get blocks placed into my spine at the same time, as well as needles into my occipital lobes. I originally started with radiofrequency in the occipital lobes, but now I actually get injections of Marcaine into the lobes. The pain has worsened so much to the point where I have been getting killer headaches on top of the killer bodily pain that I usually get. So the only way to hopefully control it and to make a dent is to add the blocks into my spine for my legs because they have worsened so much and to add the injections into my occipitals for the headaches.
Even when I have been going for the procedures weekly on my colon, it has been getting worse and worse. The doctor says that I am needing decompression more and more and it is getting harder to do. He said that I desperately need to get to the Cleveland Clinic because of everything occurring. Everyone is worried that my intestines are going to rupture or I will go into sepsis or something because after all I have all these toxins leaking into my bloodstream currently because everything literally sits in my colon because of how ‘dead’ my GI system is. Nothing passes through and as a result, I have toxins leaking into my bloodstream and they are intoxicating my organs and brain and essentially poisoning me and killing me as well. The doctors at the Cleveland Clinic are also so afraid that we are really going to have a HUGE crisis on our hands before I even get down there because once I rupture my intestines or go into sepsis, we basically waited too long and we don’t know what will happen or how or if I will be able to get to Cleveland, which is where it is important to do the surgeries because they have the facility and materials and doctors capable of doing it whereas the hospitals here are not equipped to handle something like this. So everyone is getting edgy that I am not going to make it in time.
I’m scheduled to leave for Cleveland Clinic on April 18th because I am supposed to be admitted on the 19th and the first surgery (heart surgery to put in chest ports and everything) is the 20th, but it’s all contingent on funds. That is why I have been pleading so much for “help” because without it, it is not going to be a possibility of going and without going… I am definitely going to die.
The docs are even afraid that I won’t even make it there in time. They said that if things get at worse or that I feel like I can’t make it… I should not try to be a ‘hero’ and wait it out or attempt to go to Cleveland on our own because we may not make it there. They said that I should go immediately to the hospital and say that I need to be transferred by helicopter to Cleveland. But do you know how much that will cost? It’d probably so expensive… So it’s not really an option that I’m considering even though I desperately need to get to Cleveland ASAP because I am so bad.
I know that I sound like a broken record already, but we need help so badly because we definitely can’t afford it on our own. I am literally looking death in the face. It is something that only someone dying can literally feel and understand. I just don’t want to die and yet I know my life is literally resting in the hands of everyone else; every treatment and every move of being able to get the ability to try to “live” lays in the hands of the world. I know the key to living is money and it is a shame how much it is playing a role. It is such a fearful and annoying thing to know that there is something to save your life and to make everything better and yet…. You can’t get it because you can’t afford it. Meanwhile as I plead for help, I continue to worsen and therefore, more is then needed to save my life, which is more that I can’t afford. So it becomes a cycle that you just can’t escape because everything comes down to the $ sign. It is like the ruler of the universe.
I have definitely realized that the hard way because I never thought that we would be in this kind of situation. We were always the ones “helping” others. Now when the shoe is on the other foot and we are the ones that need the helping, it isn’t so easy. People never really truly appreciate their health or people helping them. Yet, it is a gift that so many wish that they could have. If you have your health, then you have everything. I would do anything for my health and I would do anything to get the much-needed help that I need in order to save my life. I am only 33 years old and never got to live my life. I have so much that I still want to do and never got a chance to do.
The team in Cleveland is really amazing. I love them. I originally tried to get in sooner with another surgeon because the main surgeon (Dr. Kareem Abu-Elmagd) is going to be talking and presenting his paper in the end of April and he is not going to be doing any operations really until that is done. So when I tried to get to another surgeon… They all turned me away and put me back into the hands of Dr. Kareem because of how complicated and how complex I am. Dr. Kareem is one of the best surgeons in the world and a topnotch transplant surgeon, which is something that I need. The other doctors said that I am too ‘tough of a case’ and belong with the best of the best. In fact… I ended up with Dr. Kareem in the beginning because when the surgeons reviewed my case, they saw how complicated I was and how much I needed the best surgeons possible. They also saw what I was probably going to be in store for… Which was a transplant because of how very sick I am.
So my team (transplant team) discussed it and they made exceptions and everything to get me in as soon as possible because I am hanging on by a thread and not going to make it much longer. When I go for the surgery for the removal of my colon, I will need at least 3 sets of transplant hands in there including Dr. Kareem Abu-Elmagd… So you can imagine how difficult this surgery is going to be. I have to have all those surgeons just for the colon removal plus so many other specialists in the room to take care of the rest of my body. This is really going to be one huge surgery. To make matters worse… I am not in tip-top shape and I am really a disaster. They are really hoping that I will survive the surgery because of how weak and fragile I am. I don’t have any ‘reserves’ to help me recover and if I get an infection or complication from the surgery… I am really up the creek. So it is really important to do this surgery as careful as possible to make sure that it goes as ‘smooth’ as possible. The transplant team said that I am like the 4th toughest case they ever had at the Cleveland Clinic. Can you believe it? I mean it is the Cleveland Clinic… Which is supposed to be the BEST HOSPITAL in the country. So to be one of the hardest cases in the country… That really says a lot.
But I honestly couldn’t be happier and more comfortable with a team of doctors than with my team from the Cleveland Clinic. They are simply amazing. My head doc from the team even gave me his cell number and told me if I ever need anything that I should call him. He has spent countless hours on the phone with me… Like 2-3 hours at a time. Sometimes we are even up until after midnight talking. He never hides anything from me and is extremely truthful on everything that is going to happen whether I wanna hear it or not. He is also going to make sure that I am as comfortable as possible when I am there because he understands that I can’t be treated like an ‘ordinary’ or typical patient. He said that by the time I get there… The WHOLE ENTIRE HOSPITAL is going to know my case and me so that if anything should happen or I need anything at all (no matter what time of day or night), they will be equipped and able to handle me. Who can ask for a better doc?
But the doc said that the trick is to getting me there to the hospital in time because I am not doing well at all. He said that he has a private plane that he will send for me if needed because all the doctors at Cleveland Clinic get this option. I guess it pays to be a doctor at the Cleveland Clinic because you can get a plane sent for you if you need to get to the Cleveland clinic and you are hurt or sick and somewhere else. But don’t get too excited because it costs so much money. The doc said that he one time had the plane sent to pick up his buddy in Mexico because something happened to his buddy when on vacation with his family and when his buddy got the bill, he said that he could have ‘bought a mansion for that price!’ So I guess nothing comes for ‘free!’
But seriously the Cleveland Clinic and my team are really the best doctors. My head doc said that the thing at the Cleveland Clinic is that they only hire the ‘best of the best’ and if you can’t contribute to a case… It’s adios to you. That’s why the Cleveland Clinic is partially so successful. They only keep docs that can contribute to a case on a case.
The Cleveland Clinic also takes on cases where other hospitals would just pass you off or something because they can’t be ‘bothered’ with you. They actually care for a patient and whereas other doctors and hospitals are more interested in how many patients they ‘treat’ to make up their reputation… The Cleveland Clinic will just focus and take their time on that one patient that needs that extra special attention because they are so complicated and need a doctor to go that extra mile to figure things out or to help them even if it means that the docs won’t be able to see so many patients. In short… Other hospitals and doctors elsewhere get their reputation based on ‘quantity’ of patients they treat, the doctors at the Cleveland Clinic get their reputation based on their ‘quality’ in how they treat a patient. I can definitely see why the Cleveland Clinic is like the best in the nation.
The Cleveland Clinic also has tricks up their sleeves that no one else has. Since they get all the complicated cases that no one really wants to touch… They have to be innovative and think of ways to help a patient because patients that come to them are much more complicated and sicker than the regular and typical patient that a doctor normally sees and treats. So my head doctor really made me feel extremely comfortable knowing that they had stuff that no one else has and that would really help me during my stay.
My neurological illness is actually a Central Nervous Disease. As you know the CNS consists of the brain and spinal cord, and the cells in the CNS are made up of neurons (10%) and Glia (90%). Well… in RSD glial cells get activated, since they are the immune cells that release certain inflammatory chemicals, and therefore, the end up releasing inflammatory chemicals into the body. The inflammatory chemicals released cause inflammation of the nerves in the central nervous system.
As the spinal cord and brain is flooded with a barrage of pain signals, the nerves in these structures become hyper-sensitized. Two things happen during central centralization: NMDA receptors are activated (that is why Ketamine works the best on me because it is a drug that blocks NMDA receptors and there are very few that do… dextromethorphan, amantadine, methadone…which I have all tried) and glial cells are activated (which make up 70% of all cells in our CNS and remain dormant usually. Yet, activated glial cells release chemicals (cytokines) that cause nerve inflammation and it has been proven that opioids/narcotics increase glial activation… which is another reason why Ketamine is the best option to use post operatively for pain).
Although there have been no long-term studies, it is shown that opioids are counterproductive for RSD and that is why Ketamine is the best for me. Opioid induced activation of glia induces them to release neuroexcitatory pro-inflammatory cytokines, suppressing opioid analgesia. Yet, when you also suffer from severe gastroparesis and autonomic dysfunction, you need these opioids to control that aspect of those illnesses. So… it is basically two things battling against each other because I need to have both and it is at the expense of possibly causing the other to worsen. It is especially a problem when you go for surgery because that is when you need painkillers badly. Yet it is these painkillers that don’t really help my neurological illness, which is the Reflex Sympathetic Dystrophy.
I am one sick person and the doctors know already that I am going to need a lot of those ‘tricks’ and a lot of attention. In fact, my head doc already said that he is already prepared for all her phone calls he is going to get all throughout the day and night… And he said he doesn’t mind because a lot of docs are going to be seeing things with me for the first time and won’t really know what to do.
Since I am extremely sick… I am going to need a lot of surgeries when I am at the Cleveland Clinic. Therefore, I will be in a lot of comas to help me heal and everything because of how ‘sick’ and fragile I am. Since I am extremely hypersensitive, I will be in a lot more pain than a regular patient, which is going to mean that the doctors are going to have to work extra hard to keep me comfortable. So that’s another reason why I will be in a coma a lot because this way I can ‘heal’ and I also won’t feel the pain.
Anesthesiologists often are faced with the need to provide anesthesia for a patient with CRPS. Thus, special care must be provided to avoid painful stimuli from the site of surgery from reaching the central nervous system. Clearly, general anesthesia does not accomplish this. Regional anesthesia potentially can prevent a recurrence or occurrence of the syndrome from being precipitated. It is also important to note that CRPS has been caused by such minor traumas as intravenous line placement, blood donation, or simple blood draw. With this understanding, the anesthesiologist should attend to these procedures with special care and attempt to minimize any painful stimuli associated with them
The doctors already know that I am going to need all the tricks and pain stuff that can be possible because my illness makes me so hypersensitive. A simple needle stick is like someone sticking a knife through me. It’s really severely painful and unbearable. So not only will they be keeping me in a regular coma, but they are going to be using a lot of drugs people never really heard of before to try to keep me as comfortable as possible and to keep my illness from ‘spreading!’.
So I will be having comas, epidurals, pain meds, and other stuff. One drug that they will be giving me is called PRECEDEX. It’s the coolest drug. It makes you be in a coma state and yet when people come into the room to talk to you… You snap out of the coma immediately and talk to them like you are ‘fine’ and not taking anything. Then once the person leaves… You go back into that ‘coma’ state. It’s the coolest thing. They use it for really sick patients because this way it allows them to be in a coma and get all the benefits of being in a medically inducted coma, but then when needed, they can test your neurological functions easily because patients that are extremely sick and fragile need to have their neurological functions tested frequently because it’s so important. So at least that should help with the pain and also pass the time.
After all we are going to be there for such a long time. We will be there for at least 7-8 weeks. It all depends on what happens. I will be having multiple surgeries because of how sick I am. My entire body is literally dying and shutting down. I need so many surgeries and need them in preparation for the big surgery of getting my colon removed and the multivisceral transplant. After all… I have no reserves and any surgery right now is extremely dangerous and risky…especially having your colon removed and the transplant. In fact… The transplant is the most dangerous transplant you can have and only 6 hospitals in the country do it. I only weigh in the 60s and therefore, it makes any surgery especially dangerous because I can’t heal like a typical patient I will not be able to recover.
So they are going to be doing various surgeries to try to save my organs and to help make me stronger for the next surgery that will be taking place. Therefore, I need heart surgery, colon surgery, etc.
The first surgery that will be taking place is heart surgery. I need to have calcium calcifications removed from the coronary arteries and I need to have ports placed into my heart and chest as well. The ports are going to be used for various reasons. They are going to serve as ‘emergency access’ in case something should happen. I also will need the ports so that I won’t have to be constantly stuck to be given drugs and IV and everything. After all… Like I said before… Not only is constantly being stuck by needles painful, but it can also spread my illness and we want to try to minimize that as much as possible. Finally, those ports are also going to be a way they are going to try to ‘feed’ me. I need these ports to feed me because not only do they want me to try to gain weight and get some strength so I can undergo and recover from these massive surgeries, but weighing in the 60s is extremely dangerous. I look like an emaciated skeleton.
So they are going to try to ‘feed’ me through these ports too. After my colon is removed I won’t really be eating until I get the transplant. So I am trying to eat as much as possible right now because I don’t want to say ever that I should have had this or should have had that. After all… Even though I do need the transplant, we won’t know exactly when that will be because I need not just one organ but a few (so I have to wait for a donor and who knows when that will be). I need a small and large intestines, pancreas, liver, and stomach. We won’t know even how ‘urgent’ it is even though we know it is pretty urgent right now until the surgeons actually get inside and see the small intestines when they remove the colon. So I need to be fed someway or another because u can’t not eat at all… So they are hoping that I can be fed successfully through the ports.
We are hoping that it will work and I will be able to have the TPN through the central lines in my heart because I have failed TPN so many times already. I have had various ways of doctors trying to feed me such as through NG (nasogastric tubes), PICC lines, G -tubes, J-tubes, etc., but none have been successful.
I have to also decide what type of ports I want into my heart. There are really 4 types that I can have and they all have their benefits and negatives. Yet all go through the heart (through the vena cavas), it just a matter where it comes out of you. It really matters to me because it isn’t something that will just be in for a few days. This will be in for weeks… Possibly months.
The first way I can have it is by having it come out of my jugular vein in my neck, which I am kind of against. This one has the least complications but it’s so obvious because it’s coming out of your neck. I really don’t wanna see it. Plus something about knowing that it’s coming out of the ‘jugular’ really freaks me out. Yet, on the plus side of the coin… When it comes to her massive surgeries like the removal of the colon and transplant, I might get away with not having to have another ‘central line’ placed in me. It will be big enough for the TPN and to have so many fluids and blood and everything else that is needed during the surgeries. So that’s good. But it isn’t good enough reason for me to go with it.
The second option is one that comes out of the femoral artery, which is in the thigh/groin region. The doc said that he is not a fan of that one because it has a chance of too many infections, which is something I can’t afford.
Then third option is out of the clavicle region. It’s got a chance of causing a pneumothorax, which is the popping of a lung. I am a pro at that because I already had one of those and it was the worst. But the doc said that being so thin is a definitely plus with this line and diminishes the risk. This port is called a HICKMAN line and it will also hopefully enable me to not to need another line drawn during the surgery. This line will be big enough to hopefully do everything like the one from the jugular.
Finally… I can get a PICC line, which is out of the arm. I like this one because it is the nicest looking and everything, but the thing is that it can’t stay in as long as the others. The complication rate is the highest from this one and it will need to be changed more frequently than the others. It also has the higher chance of getting infected. But it’s also the tiniest too, which will also maybe make it more comfortable when they run the TPN because remember that I can’t even tolerate an IV running because it feels like glass going through my veins. But as since this line is the smallest and will essentially slow the rate of the TPN (which may make it feel better than the other lines), it will also mean that for sure I will have to have another central line placed for the colon and other massive surgeries because it won’t be big enough to run TPN and all those fluids and blood and everything else that is needed. In a emergency, you need to get lots of fluids in as possible… Especially blood. There’s no way that a PICC can do it. So even though it might be more ‘comfortable’ for TPN to be run, I don’t want to have to have another central line placed or have to constantly have this one changed either because of infections and stuff.
So I have a lot to think of. I probably will go with either a Hickman or PICC. But out of those two… Probably a Hickman. But I am not 100% sure. I still have some time to decide but I have to make my decision soon. The Hickman is also more intensive of an operation than the PICC… So I have a lot to consider.
Another drug that they are going to give me is a drug called EXPAREL. It’s a long lasting lidocaine. The doctor said that when you get this drug, it kills the pain at the site for three days, whereas lidocaine is one temporary. He said that this drug works so well that they give it to people who have hernia surgery and they are walking around pain-free afterwards. He said, “it’s another amazing drug and trick up the sleeve!” The doctors will just keep injecting it at the sites when needed so that will help too.
He told me that they will not be afraid to give me pain meds either. Whereas when I am in the hospital here, the doctors and nurses are extremely afraid because of my low blood pressure and pulse. After all… These drugs drop pulses and blood pressure even more. Mine is already so low that sometimes I have to sleep with the paddles next to me just in case. But the doc said that here at the Cleveland Clinic… They won’t be like that. They are used to people in tough situations and such.
They also have at the Cleveland Clinic a team called a AMET team. You can activate it yourself if not doing well and in pain. When you activate it, the team (which is made up of a pulmonary doc, anesthesiologist, and two others) has to be at you within 10 min at the most. This made me feel better because if I am really not feeling well or having a autonomic dysfunction attack, I can activate them and they can put me immediately into a ketamine-induced coma to get me out of my suffering.
I will be in the hospital basically the entire time. A lot of the time I will be in the ICU because of the care I need and because they don’t do ketamine on the regular floors. But the docs said that if I do get strong enough, I can go back to the hotel for a few nights until the next surgery to stay with my dad. The hotel is part of the hospital, so it isn’t really like I am ‘leaving’ the hospital per se and if anything goes wrong… I am a phone call away. In fact, I can even activate the AMET team from the hotel and they will bring me right into the ICU and put me into a ketamine-induced coma. I won’t have to ever worry about going through the ER because it would be a disaster
So besides the chest port and having the heart surgery to remove the calcium calcifications from the coronary arteries, I will need other surgeries besides the colon removal too. I will also need most likely to have a pacemaker placed in me because of my extreme bradycardia and Autonomic Dysfunction. However it isn’t a definite because they are hoping that my heart might ‘wake up’ and become stronger on its own once I start getting TPN. But it’s highly unlikely that will happen. If I do get the pacemaker, it will be a more intensive surgery than for a typical patient because I can’t have it placed where it would be normally placed. I need to have it put under the muscle and bone because of how thin I am. If we didn’t, it can easily erode the skin and become infected, which is something we can’t afford especially when it comes to the heart. You know?
They want me to have as much time with the TPN as possible so that I can be as strong as possible with for the removal of my colon since it is one massive operation. So whereas the chest ports are scheduled for April 18th, the removal of the colon is scheduled for may 11th. I am really getting sick and they really want me to come as soon as possible. The soonest I get there… The sooner they will do the heart surgery to put the ports in and start the TPN. Not only will it hopefully save my life because I will be at the Cleveland Clinic sooner rather than later, but it will also give me more time with the TPN too for the colon surgery.
Even though that could be a big plus in going earlier, it would also mean staying there longer because they won’t up the removal of my colon. We can’t even pay for the surgeries and the stay the way it’s arranged now, which is for about 7-8 weeks (I will have to stay in the hospital and ICU for about a week after the colon is removed and then another week or two in the hotel to make certain that I am stable enough to come back to new York. After all… The Cleveland Clinic isn’t exactly around the corner so they have to make sure that I am string enough not to need them or that I won’t be having any emergencies. You know?
The one thing that stinks is that I’ll be missing mother’s day. I won’t even get to see my mom during all that time because she won’t be able to come with us. We can’t even afford the trio for my dad and me… There’s no way she can come too. Plus someone had to stay behind to try to keep things going and stuff. So thank goodness for Facetime because we will be doing that a lot.
One of the many good qualities of my doc also is that he knows where we are coming with due to the money issue. He was in a very similar boat as us because he didn’t grow up in a wealthy environment either. In fact he had to worry about money too when his father had back surgery at the Cleveland Clinic, so he knows where we r coming from. He told me that a room at the Cleveland Clinic back then was like $70,000. So we really are going to need help even though the insurance company will cover some.
We know this stay is definitely not going to be cheap. That’s why we desperately need help in raising money. The hotel that we are staying at I’d giving us a break because I am a ‘transplant’ patient. I would never ever think that this hotel would cost so much especially since they know that it’s patients that stay there and it’s part of the hospital because it’s connected to it. I also can’t believe that only ‘transplant’ patients really get a discount. How are patients ever supposed to pay for staying at the hospital because even being a transplant patient and getting that huge discount… The cost is still astronomical (like over $130 per night). Gosh… When I think of spending about 8 weeks there, I get sick. I don’t know how we are going to afford this.
One benefit of being a patient of the Cleveland Clinic is that you can get any type of food delivered even if the place doesn’t technically deliver. The doc said that you can order basically all over the area and they will bring it. That’s good to know because the food St the hotel is also very expensive. My doc said that he has only eaten there maybe less than 10 times and it has only been when he had a gift certificate for like $50. He said that this just bought him a appetizer and a beer.
So if you can think of any way of fundraising… Much appreciated. I am still selling bracelets in blue or pink that says HELP SAVE FALLON for $5 please inbox me if interested. I also am selling chocolate lollipops in the shapes of roses. They cost $1 each. If interested in buying or even selling… Please inbox me. I desperately need all the help I can get because I can’t let money stand in the way anymore. I’m at the point where I’m barely hanging on and will not make it much longer. Please don’t let me die. Please help me.
Besides trying to make sure that we have the funds available to go to Cleveland Clinic in April, I have to really make sure that I can “hold out!” I really don’t want to be forced to go down earlier because we definitely can’t afford it. We definitely can’t afford any emergencies such as to have to go to the hospital and be heliported because it would be just so expensive. So I just gotta hang in there as long as possible!
It really hasn’t been easy though. In fact, I have been doing really badly lately. I think you probably figured that out though because of the amount of blogs that I have been writing. I used to be such a big writer and wrote all the time. Now it takes me so long to even get to write one.
I have been spending my days really unable to get out of bed. I have never been like this. I have always been a person that no matter what… I used to push myself out of bed and get dressed, and look as good as could be. I was a big believer that if you “looked great” than you “felt great.” But unfortunately I have been having a hard time just getting out of bed. I literally spend basically the whole entire day in bed because I am too weak and in pain to get out. I can’t believe what my life has turned into. In fact,
But at least I have my buddies to keep me company. My cat and dog are really my best friends. I don’t know what I would do without them. I am really going to miss them when I go to Cleveland. After all, my cat Missy is like my babysitter. She literally talks to me in cat language… meowing… like I can understand her. I talk back to her, but I of course have no idea what she is saying. She is my babysitter though because whenever I am doing worse than usual, she remains by my side and there have been so many times when she actually has alerted my parents that I am in distress. It is really amazing.
When we go to Cleveland though, I won’t have them. I am certainly going to miss them. Missy, my cat, will be celebrating her 11th birthday while I am gone. I don’t know what my dad is going to do. I certainly wish I could bring my dog for him. After all, Max is the only thing that calms him down. He is like my dad’s best friend even though Max is technically my dog. My dad is under so much stress and everything, but the only thing that calms him down is Max. Sometimes I think he is happier to see the dog than he is to see any of us when he comes home. He takes such good care of Max and spoils him badly.
In addition, the doctors also have recently tried changing my medication lately to try to make me more comfortable. I really don’t want to be on all these medications, as I take more medications than a 300 lb. person can tolerate and here I am… only 60 lbs. and I am taking all these medications that can probably kill a horse. I take everything from Methadone to Ketamine to Dilaudid to Morphine to Klonopin to more. I take on a daily basis over 50 pills. Yet, the doctors have told me that if I ever want to come off the meds, I would literally have to be placed in a coma and be detoxed because I would die otherwise since my body is so dependent on it.
So I am also hoping when I go to the Cleveland Clinic that this perhaps can be done because I will be in so many comas because of the surgeries. I am hoping and praying that they will be able to detox me and I won’t have to take all these pills anymore.
But in the meantime, there is this one medication that I am on called AVINZA, which is really morphine that my body is very heavily addicted to. This is the one drug that I can’t even go down any little bit of mg or even miss a time of dose because I will suffer big time for it and go into severe autonomic dysfunction. However, there is another drug that is morphine called KADIAN and we thought that it would be a better drug for me and wouldn’t be such a big deal to switch since it was still “morphine.” However, the switch tended to be a really BAD idea and I suffered big time for it. I ended up having to be switched back to the AVINZA. I was in so much pain that thankfully I had the procedure to work on my colon the following day, so the drugs that they gave me during the procedure helped a bit. I told the doctor that if I wasn’t there for my colon, I probably would have ended up in the ER with how badly I was feeling.
So I guess that is about it for right now. I have been trying to do some reading to keep my brain at least somewhat functioning as much as possible. So I am trying to read FIFTY SHADES OF GRAY. I am probably the only person in the world who hasn’t read it as of yet.
I want to thank you again for all your continued prayers and support. I definitely wouldn’t be able to make it this far without them. You really have played an important role in helping me survive up until now. I am so fortunate for all the wonderful and thoughtful donations that have been given and have given me the ability to receive treatment and receive my medication that I wouldn’t have been able to get otherwise. Please continue to pray and follow my story, as I need as many prayers as possible during this time of need.