Just wanted to post this because wanted to let you know that I am off as of tomorrow (Thursday) to Maryland. We are heading towards John Hopkins Medical Center and I am extremely nervous. I really don’t want to go, but I know this is something that has to be done. I have actually been hoping that Thursday never comes and that I can freeze time because I really don’t want to go… but like always… when you don’t want something to occur, it comes faster than ever.
Even though my appointments with the doctors are on Friday, we are leaving tomorrow (Thursday) because we need to travel to Maryland and get settled. Plus… since we are flying, we cannot first fly out on Friday since our first appointment is so early on Friday. However, even though there is more than one flight tomorrow, my father wants to go on the 6AM flight so that we can get there by like 7 something. Maryland isn’t that far away, so we should get there in no time. However, he wants to get there early because he feels it will be the best option for us since the airport will be less crowded at that time, it will be easier to go through security, parking at the airport will be easier since we are leaving our car, etc. I better also go early so that my dad doesn’t have to ‘rush’ because we all know what happens when my dad ‘rushes’ or gets nervous that he is going to miss the plane because it is too crowded or something… remember what happened the last time? Dad ended up leaving our carry-on baggage on the plane and we ended up having to board our connection and leaving the bag that had all my medical records, medications, etc behind in hopes that we would be able to have it found and returned to us.
I never sleep anyway because of this illness, so it really isn’t a big deal in terms of waking up to leave for the airport, but in terms of getting my body out of bed and moving… that is another story. With my illness, it usually takes me forever to get out of bed because the pain is horrendous. But, dad still wants to leave before the sun comes up and get to Maryland as early as possible. Hopefully since we are leaving so early, my disease won’t act up so much and be so much of a trouble because as the day goes on… my disease happens to get worse and worse. Traveling is extremely rough on me and that is another reason why dad wants to leave early because it will be easier on me because my illness isn’t so bad compared to as the day progresses.
Since all my appointments begin on Friday and we are arriving extremely early, I am hoping that the weather and my disease will permit us to at least enjoy some of Baltimore. I really don’t get to do a lot or enjoy anything or get to go out a lot, so I am hoping to be able to take advantage of this trip by being able to go to the harbor and watch the boats or something. I know that the traveling will be rough on me, but I am hoping that it won’t be so bad and I will be able to at least do something with my dad.
It would be a shame if we can’t take advantage of the day because we are staying in the Baltimore inner harbor. Our hotel is right on the water and we will be able to relax as we sit alongside the water and watch the boats. We are supposed to have a room that overlooks the harbor, at the very least, so even if I can’t get outside because of my illness, I will still be able to enjoy the view. But of course nothing will compare to actually sitting alongside the harbor in the outdoors. I am going to need to relax especially tomorrow because I am extremely worried about my appointments on Friday because I am most likely going to be having the emergency surgery on Friday.
Although I have been to John Hopkins previously with my mom, this will be the first time that my dad will be there. I had such an amazing time with my mom and I can’t wait to enjoy it again with my dad. Our hotel is the same hotel that I stayed with when I went with my mom and therefore, it is located right on the harbor and in a location that where I will have the opportunity to see the boats, walk outside, and do so many other things. After all, Baltimore’s inner harbor is one of the most photographed and visited areas of the city. It has been one of the major seaports in the United States since the 1700s and started blossoming into the cultural center of Baltimore in the 1970s.
My mom has been busy telling my dad all about John Hopkins. I haven’t been there for a while and I don’t remember all that we did. That is the thing with this illness… it kind of deletes my memory and fogs it. I hate when that happens because there are so many times that we are talking about things that we have done as a family and I just can’t remember it. Anyway… my mom told me that there is plenty to do there. She reminded me of all the things we did when I went with her such as the aquarium, the Hard Rock Café, going shopping, etc. but that was years ago and knowing that we don’t have the expenses anymore that we did at that time and I don’t even have the same energy… I would just be happy sitting alongside the harbor watching the boats with my dad. I just hope that the weather and my illness permits me to do so because it would be a shame not to be able to enjoy all of that after coming all that way.
I really hope that I get to have some fun on Thursday because it will be great to have something to take my mind off of things. I am really nervous about Friday because I really don’t want to have the surgery. We are definitely positive that I have something going on like an obstruction or a colon twist, but we just aren’t sure which one it is. The doctors are leaning more towards a twist in the colon, but they will need a final CT scan just to confirm it. This was always the worst fear of everyone because it is very life threatening when you have a twist in the colon. I mean having an obstruction or a twist in the colon both are extremely bad scenarios and both require surgery, but having a twist in the colon requires immediate surgery right away because it can easily kill you. Due to my severe gastroparesis, my entire GI system is basically dead and as a result, I have so much air building up. The air is exerting so much pressure on my organs that it is literally compressing them so much and even shutting them down. When doctors take x-rays, they can’t believe what they see because it is simply amazing. They can’t believe all the air that is built up in my abdominal cavity and they are even scared to go inside to do anything because it can easily kill me. Since my gastroparesis is so horrible and my GI tract is so paralyzed… nothing moves. As a result, I get so bloated up with air that I literally look at times like I am 9 months pregnant and ready to give birth. It isn’t me just saying that either, but others can vouch for that too. I always walk around wishing that someone would be able to ‘pop’ me.
We always knew that the air was compressing my organs and shutting them down. However, the doctors were always afraid that it would also cause a twist in the colon because like I said before, it would require immediate emergency surgery. I am extremely nervous to find out if it is indeed a twist because I really don’t want a colostomy bag. There is a very BIG chance that I will have to have one if there is one.
I just don’t know how I am going to be able to deal with it because it is like I am not ‘human’ anymore. As it is, they want to put tubes in me to ‘feed’ me, tubes to ‘vent’ me (a tube that will open up when needed so that air can be released), as well as a central line because I have been deteriorating so much that they want a line that is easily accessible and my veins are deteriorating and getting hard to access. I just don’t want a bag in addition to all this as well. You know? When is this all going to stop? It is like I am going to have artificial means all over the place. I will have tubes going into me, as well as bags to take stuff out of me. I am definitely going to look like a FREAK and it is definitely not the life I want to live.
I really am afraid of getting the colostomy bag and to be honest, I have told my dad that if it comes down to it, I really don’t want one. However, my dad doesn’t want anything to happen to me and as a result, he keeps telling me “whatever has to be has to be.” I told my dad that I am going to write all over my abdomen “NO COLOSTOMY” so that they won’t give it to me. I just hope that it won’t have to result in it. I know what my dad is saying because if it comes down to life and death… what other choice am I going to have, but I don’t know how I am going to be able to handle this to be honest with you.
The doctors have wanted me in Baltimore earlier this week because of what is happening. They wanted me to go for a CT scan also so that we can clearly see what is going on and know definitely if it is an obstruction or a colon twist, but I have been putting it off. I figured that I would wait until I went to Baltimore because why should I know beforehand. After all, “no news is good news” and I knew that if I found out before that it would mean that I would have to do something right away. This way I can pretend that nothing is wrong. You know?
So I am meeting with the GI team Friday morning and with more doctors later on in the day. We will see what will happen because I am rapidly deteriorating and need something to work besides just dealing with this obstruction/colon twist. Even if it wasn’t for this surgery, we were still planning on going to Hopkins because we needed something to be done. I am suffering so much and deteriorating so rapidly that if something is done quickly, I am going to end up dying. After all, I am only having a BMI 10.8 and my body is shutting down. Doctors can’t even believe that I am still alive, but I am defying medical odds. Who would think that someone as sick as I am, someone suffering from all that I am suffering with, someone weighing only in the 60s, etc. would still be alive? I am just proving that I am a fighter and not meant to die. I am going to win this battle!!
However, I must say things are progressively worsening. My bloods are continuing to drop and my brain tumor is continuing to worsen. Since the tumor is on my pituitary gland, which is the master gland of the body, it is playing havoc on it and causing even more problems. So besides the autonomic dysfunction wreaking havoc on my body in a neurological way, I have this tumor wreaking havoc on my body in an endocrine way. I can never catch a break. In addition, the osteonecrosis is also worsening. Even though the surgeon did remove part of the dead bone when I had the surgery, the osteonecrosis is continuing to spread and I am getting more dead bone than before. I am extremely uncomfortable because more of the bones are dying. I can never catch a break.
I really need to remain calm though because my heart just can’t take it. Between my bloods dropping and everything else going on… I can easily have cardiac arrest. I am surprised honestly that with all this stress of everything that it hasn’t happened already. But… it just proves one thing… I am not going down without a fight!!
I have been on ketamine at home the last few days and it really has changed things. I only wish I would have discovered this drug beforehand. I have always gone for the ketamine comas and infusions every other week, but now that I have it at home and take it everyday… it definitely makes a difference. However, it was an impossible drug to get and I thought I would never be able to find it. No one carried it!!
Even though the ketamine is an amazing drug, it doesn’t always work. I am starting to have anxiety over it because I am getting fearful when I take it that it will be a time that it won’t work. However, when I do take it and it works… what a difference it makes. The only bad thing is that it is so short-lived. The ketamine only makes a difference for about an hour or so, but during that hour, I feel like nothing can bother me. Even though I am feeling the pain, it makes me kind of ‘numb’ to it. I can’t explain the exact feeling to you but now I understand why it is an illegal drug and why people call it “special K.” I am really scared though because the doctor is thinking that I am building up a tolerance to the drug already and thinking of increasing it. I really don’t want to become addicted to it. In addition, this drug isn’t cheap and the insurance does not cover it. I pay completely out-of-pocket and therefore, it is another expense to add to the pot.
So we are off tomorrow to Maryland. I just hate not knowing how long we are going for and therefore, we don’t know how long to pack for. I have so much to do because since they are talking ‘surgery,’ most likely I will be down in Maryland for at least a week. Besides the surgery, they want to put tubes in me to try to ‘feed’ me as well and try to ‘buy’ time as well. I believe that they are going to try some of the surgeries that California was planning and putting the tubes in that they were going to do as well in order to ‘buy’ time as well since I am running so quickly out of time. I really need something to be done and something done quick if I am going to be able to survive this.
I really hope that Hopkins will be able to help me because first of all I need a hospital on the East coast. If I have a medical crisis, I can’t really go to any local hospital because they can’t really handle me. They have already told me that at the most they will get me ‘stabilized,’ but they really can’t handle my situation and as a result, they will have to transfer me. As a result, the closest hospital that can really help me and have the necessary specialists I need is Hopkins.
I am also hoping that Hopkins will be able to help me because my doctor from California is leaving the hospital. As a result, I don’t know how what is going to happen because I can’t just go to ‘any’ hospital because even if he goes to another hospital to continue practicing, if the other specialists in the hospital are not familiar with my other conditions, I will not be able to go there because they will not be able to handle me. So I really need to have another set of doctors since my doctor is leaving. My doctor has always said for me to go to Hopkins because that is where his mentors are stationed, so I am hoping that I am making the right decision.
I am going to miss my mom and animals so much. That is one thing that I hate when I have to go to the hospital. I only wish I could take them with me. But unfortunately, someone has to stay back to watch the business. Even though my dad won’t be around to do the actual ‘work,’ at least my mom will be here to answer the phones and pay the bills. But believe me… we will still take a severe beating because people aren’t going to want to wait around until my dad gets back to get the work done. When we leave to go away, we lose out on so much work because people don’t want to wait around. So you can imagine how much money we lose out on. There is so much more money going out than coming in and we are really suffering. If my parents ever lost the business because of me, I would really feel horrible and I don’t know how I would live with myself.
So that my dad can hold onto as much work as possible when we are gone and make as much money as possible, he literally works himself as dog. He usually wakes up at 3AM, out of the house at 4, and then works nonstop until 7PM. He is no youngster and with all this heat and then all this stress of the business and me not doing so well, I am extremely worried that something is going to happen to him. He is so overworked that he is so “jumpy!” He doesn’t mean to be ‘jumpy,’ but that is what happens when you work 7 days a week and you are so overworked. He can barely keep his eyes open and he can’t even walk straight anymore. He is barely functioning, but he continues to do this so that we can have as much money as possible to pay for our bills and treatment, as well as so the business survives. If something ever happened to my dad, I would never be able to live with myself. That is another reason why I am so glad that we are going away tomorrow. Even though I know we really can’t afford it and my dad can’t really afford to ‘miss out’ on the work, he really needs a ‘break.’ He is working himself ragged and if he doesn’t take a break, I fear something is really going to happen to him.
Yet, he does all this because he knows how important the green dollar is in the world. Besides the difficulty we are having in paying our bills, we are having an extremely difficult time paying for my medical treatments. In fact, we can’t even get me all the medical treatments and medications that I need because of how costly they are. I need to see so many specialists, have surgeries, take medications, etc. and they are all so expensive. That is why I always plead for help. I have been sick for so long that we can no longer afford the treatment that I need. Even though we have made so many cuts and even cuts in my treatments as well, it just isn’t enough. We are really at the bottom of the bucket when it comes to funds and that is why I am always begging for help. I only wish the media would take on my story and bring attention to it. I have tried so many ways to get my story known and to try to get help, but unfortunately it hasn’t really been successful. I know the true key is really to be in the media, but even though I have tried to contact them so that it can happen, we all know “it isn’t what you know it is who you know” an unfortunately we know no one.
Like I said before, we have made so many cuts to and have tried so many avenues to try to pay for treatments for me, but it is never nearly enough. The bills are just way to great and the treatments that I need are just way too expensive. I went the other day and sold basically all my jewelry, which was something that I never wanted to do. But what other choice did I have? I needed the money. It was only material things anyway and it went for such a better cause. You know? It just stinks that I had to part with such special items that ranged from jewelry that I wore when I was a baby to nowadays. Even though I definitely wouldn’t have wore the jewelry that I wore when I was a baby or a little girl, I still would have loved to have kept them as memories and would have loved to give them to my little girl if I ever had one. But, I figured if I didn’t sell this stuff, I would never get a chance to even have the opportunity to have a little girl in the first place, so I might as well do it. You know? I just held onto a few special pieces, but it still saddened me to know I had to sell my jewelry and wished it didn’t have to come down to that. But oh well… they were only materialistic items anyway!! Life is too precious and hopefully the money I got from them will make me well. But in reality, I really need much more help than that. I really need help from others. If only I could get the attention of the media, then I can reach more people. After all, every $1 makes a difference because it is 1 less that I have to come up with.
Well… I better get going. I have a lot to do and have a busy day ahead of me. I have to make cookies besides packing and getting things ready. I can’t leave my brother home without cookies because that is his favorite. Even when he was away at college, I would pack up boxes with homemade cookies and ship up pounds of cookies. He just loves them and says that nothing tastes the same as the ones that I make. I don’t mean to brag but whoever tastes my cookies seem to love them. Not only do they taste yummy, but also they are always perfectly circular and people always wonder how they get the perfect shape. My brother calls my cookies “Fallon’s Famous” just like the brand known as “Famous Amos!” You should see how the cookies get wiped out in my house. My brother even used to bribe people at college with my cookies. At least I am still good and useful at one thing!
I also have to make up my records for the doctors. Not only do I have the records that I have culminated from each specialist I have ever seen on my computer, but I also have a summary of my medical history. I have so much going on that it is easier to just print out my medical history that includes my history, treatments, medications that I have taken and currently take, allergies, and symptoms. My condition is so convoluted that it is easier to write it all on the computer and print it out so that I can just give it to the doctors. It really saves the doctors plenty of writing because if they would have to write all this stuff done when they examine me, it would take forever.
When I go to a doctor and bring my records, I always end up killing an entire tree basically because it is like bringing a huge book. Doctors cannot believe how many records I have and since I am so complicated and they aren’t used to hearing my story, they can’t just skim and flip through them. They really have to go through each page in order to understand me because I am so complex and my condition is so mysterious and unknown. My dad always kids around with them by saying that it is their “midnight reading.” You can just imagine how much all the records weigh too and therefore, they are all way too heavy to carry on board. I usually carry one set on board and put the rest underneath the plane just in case the baggage gets lost.
Well… talk to you soon!