I figured I would write a bit to you because wanted to inform you of the absolute latest and let you know that I am back home, as well as to try to keep my mind occupied because I am really not feeling well. I also wanted to let you know what is going on because it is very possible that I can end back in the hospital very soon or something worse can happen because to be honest… something isn’t right with me. I am really not feeling well and it isn’t just a matter of being in ‘pain’ or feeling ‘ill.’ I
I am really scared that something bad is going to happen to me because I am really not doing well tonight. Besides not feeling well because I am in my usual agony of pain and suffering, my body is going through intense spasms throughout it. It is so horrible. You know when you get those leg cramps that you literally have to get out of bed to walk on your feet in order to untwist the spasm or relieve the cramp? You know the cramps or spasms that you get when you feel your body being twisted and you see parts of your body being twisted in the weirdest position? Well… that is what is happening to me. All my muscles throughout my body are becoming hard, tight, and extremely painful and there is nothing that I can do to alleviate it. In fact, people usually get up and try to walk on their legs or move the affected limb to try to get rid of the spasms or cramps. However, the more that I do that, the worse it happens to get. It feels like I am being contracted in all different directions. The spasms are worse in my legs especially in my ankles. I can’t even walk (even on the one foot) because it keeps having spasms and having contractions.
All these spasms and contractions are involuntary and therefore, I have no control over them. I know that almost everyone experiences muscle cramps, which come without warning, but the amount of spasms and contractions that I have been having are so abnormal. Nothing I can do is stopping them. I am really nervous because I haven’t been feeling well and I know that this past trip really took a HUGE toll on my body. Traveling is definitely not easy on me. Muscle cramps and spasms can have many possible causes. But to know that I am suffering so much now, it can only mean one thing… whatever the cause is, I am doing worse in that area even though I was just ‘bad’ before. You know? I always had poor circulation, dehydration, bad bloods (potassium and magnesium deficiency), and malfunctioning nerves, which could cause this. However, now that I am having a severe problem with all these spasms and cramps, I am only worried that my bloods have taken a toll for the worse, I am dehydrated more, or my circulation has even worsened further, which is something I definitely couldn’t afford since all these factors were already in the ‘danger’ zone before.
No matter what I do, whether it is massaging, stretching, etc. nothing is alleviating the cramps and spasms. I am really getting nervous because they are coming so frequently and not going away. When I spoke to my dad about it, my dad said that maybe it is due to the ‘trip’ and the ‘traveling.’ I am hoping that this is the case because and I am thinking it probably has something to do with it because the last time I went away, the same thing basically happened. I had come home from California and the very next day I couldn’t walk. My whole entire body was suffering from the same exact thing with having spasms and contractions and I was unable to ‘walk’ because every time I bent my ankle to walk, it ended up in a contracture or cramp in the calf and ankle (just like now).
However, just because it happened last time, it doesn’t give me the ‘ok’ that everything is going to be fine. It doesn’t mean that nothing ‘bad’ is going to happen. It just means that I was fortunate that I was able to survive and overcome it last time and who knows what will happen this time. Each time is unique and it doesn’t matter what has happened before. As a result, we are hoping we won’t end up in the hospital tonight, but we are “on guard” because anything is possible. Dad has been trying to give me my heart meds, Gatorade slushies, and some ice pops with electrolytes in case my bloods have dropped, but nothing really has been working. Hopefully something will work soon because not only am I in so much agony with this cramps and spasms, but I am also scared something is going to happen.
I really know something is going on because these spasms and cramps are just a ‘symptom’ of something else that is going on within my body. Traveling takes a huge toll on me and it takes awhile for me to ‘bounce back.’ However, even when I do bounce back, I never go back to the way that I was beforehand. That is why we hate to travel because I am never ever the same as before. I always end up losing weight and when I do, it is basically impossible to gain it back. I can’t even afford to lose weight because I already weigh in the mid 60s. When I weighed myself when I came home today, I of course did lose weight and even losing 1 pound is very crucial because that is like losing 10 pounds to a normal person. In addition, I also vomited blood again tonight. So between everything going on, I know that my body is not its ‘usual’ self and even though it is usually ‘bad’ to begin with, it is even worse now. Hopefully, I will be ok.
But anyway, it feels great to be home. I am home finally and will be home for about 2-3 weeks because I have to go back to the Mayo Clinic to have surgery again. So I am going to enjoy this time home. I surely missed my mom, brother, and animals. Even though I was with my dad, who is my very best friend, I really missed them. It was so great to be able to see them. I am so lucky that we came home today when we did because of all that extreme weather that has been happening out in the Midwest. There have been many outbreaking tornadoes out there tonight and it probably would have affected us. This weather is just crazy.
I can’t believe the weather that we are having in this world. I am so happy to be home in the warm weather because the weather we had in Minnesota was crazy. Everyone even said that. It was cold, hot, rainy, sunny, stormy, raw, etc. all when we were there. You never knew what to expect. It was crazy. Thank goodness they had tunnels (subway system) and a skyway system to take you everywhere because this way you never had to be exposed to the outside. So, at least we were always kept warm and nice and dry.
So much was done at the Mayo Clinic and so much still needs to be done before surgery. I am so fortunate that they were able to give me an appointment when they did because I am so sick. People normally have to wait for months to get an appointment, but I was giving an appointment within a month or so. People are only given an appointment like that if its an emergency or gravely ill. Well I knew I was always sick, but like always, I didn’t know that I was even sicker than I already knew. The doctors literally said that I am the ‘worse’ they have ever seen. I really freaked them out because they never saw someone with a BMI of 10.2. After all, a male with a BMI less than 13 can’t live and the same usually goes for a female under 11. They said, ‘I really need help immediately.’
So much was done when we were at the Mayo and that place isn’t a ‘small’ place either. Even my dad couldn’t believe how much walking he had did and said that the walking affected him (and he is well). That place is just huge and we had appointments literally from morning to evening. Yet, we did find out important information and as a result, we will be heading back there most likely on June 23rd providing everything gets approved and set up and cleared because I need surgery. Of course that is also contingent on our finances as well, so it is important that I get some incoming donations because it is going to be very expensive since we will be there for at least 2 weeks.
During the next time I go back to have surgery, they will be doing various surgeries. I won’t be just having ‘one.’ First, I will need to have surgery to have my bowels unloaded. It seems that since my whole GI tract is not working and is ‘dead’ and paralyzed, there is nothing that passes through… not even stool. As a result, I am all loaded up and blocked up. They have to clear me out because there is large stool all throughout me and it just can’t move anywhere because I have no peristalsis throughout my system. The doctors said that when they do this, I would also lose weight because since I am so ‘loaded’ up, the stool weighs a great amount of weight. That is why people lose a lot of weight when they use laxatives. So, they are even more nervous because I am already weighing in the mid 60s. I really can’t afford to lose more weight.
The only comfort that we have is that the weight that I am is not ‘real’ weight right now anyway. I really actually weigh less than I do now anyway and I am only this much because of the stool in me anyway. So when I am ‘cleaned out’ I will only show the ‘real’ weight that I am. It isn’t like I am going to ‘lose’ weight but more like I am going to show the ‘real’ weight because stool is like ‘fake’ weight on me. You know? But still… to see a number in the 50s when this occurs, it really would freak me out and the doctors said they would freak out too even though we really know deep down what is happening.
Since this surgery will make me lose a lot of weight and cause a lot of disruptions in electrolytes and balance in my body, I am also going to have to go for surgery to put tubes in me. They want to put tubes in me to try to feed me, so they are going to try to put tubes into my intestines in hope that they can try to find one spot that is viable since we already know that all of my stomach and most of my intestines are gone. They are hoping if they possibly go low enough, they will be able to find some viable portion. The tube will run from the nose to the entrance of the intestines, and it is not a common tube to have done.
The doctors also discovered that I have matted small bowel loops. This means that there are obstructions in my small intestine. This needs to be taken care of as well. It looks as if my intestines could be twisting or there could be an obstruction. Either way, this is not a good sign and needs surgery to be taken care of immediately.
The doctors also want to do surgery to put tubes in me to ‘vent’ me. Since I can’t remove air from me because my GI tract doesn’t move, they are going to put tubes in me that I will supposedly be able to ‘vent’ myself. I suffer from severe bloating and my abdomen constantly becomes distended. I become so distended in fact that it looks like I am pregnant and ready to give birth. It is so uncomfortable and nothing that I can do really alleviates it. Even when I get a gas bubble, I can’t burp it out on my own. Instead, I have to use my hands and maneuver it around my abdomen with my hands and try to bring it up. So, hopefully these tubes will do the job to be able to remove whatever ‘gas’ I may have. It will hopefully make me more comfortable.
I also will have to have surgery to put a central line in. That is where they will be putting the IV access in. Since I am going to be undergoing so much surgery and since I am so unstable, they want to have the best access that they can have, which is though the central line. In addition, they are thinking of possibly giving me TPN through that line as well, even though they would really not want to because of the severe risk of infection. TPN is used as a last resort because it is not a great option for anyone let alone for me. This unnatural way of feeding the body is far from perfect and comes with several significant complications such as infection (which leads to septic shock) and is frequent, blood clots, liver failure, etc.
The doctors are also putting in a central line because they are worried about re-feeding syndrome. They think that they would be able to ‘control’ this better though this line. Like I said before, Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally). These shifts result from hormonal and metabolic changes and may cause serious clinical complications.
During my appointments at the Mayo, we found out that my eyesight has really deteriorated. Even with glasses, my eyesight is 20/60 and 20/40. I have also been getting severe headaches and a lot of my bloods relating to my pituitary brain tumor have become elevated. As a result, the doctors want to look more carefully into the tumor as well. Therefore, I will need a special MRI done that I need to be under general anesthesia for. Since I need to be under general anesthesia, they figured that I would do it during the hospitalization.
So a lot has to be done and has to happen. I was supposed to be going to Georgia beforehand to have that huge intensive ketamine coma, but we are thinking of postponing it. Not only do we not have the funds for both trips, but we were also thinking it might be better to put Georgia to after the Mayo Clinic because we are afraid that the surgeries are all going to aggravate and exacerbate my neurological disease and autonomic dysfunction. If that happens, we don’t want the treatment that I am going to receive in Georgia to be ‘wasted’ or ‘undone’ because any bit of trauma to my body can spread and worsen my illness. We would hate to go through all that in Georgia to only worsen it again. You know? So we figured that we would do all the surgeries at Mayo and then have the huge Ketamine coma in Georgia so we don’t undo the intensive coma that will hopefully work and be beneficial to me.
So we left today to go home. We had a good trip home. We were very fortunate that the same couple that picked us up in Minneapolis to drive us to Rochester, which is 80 miles away, was able to drive us back to the airport. We really liked them and were really happy when we heard that they were going to be able to. However, we missed his wife in the car, but we understood that she needed her sleep because he picked us up quite early, as we left like 4:30 in the morning. We can’t thank them enough because not only did they pick us up and drive us the 80 miles to Rochester, but he drove us back to the airport at that hour in the morning. In fact, he was so generous that he knew how much I wanted to go to Mall of America and since I didn’t get to go, he took me there this morning prior to going to the airport so that I could see it. We had some time prior to going to the airport because we were early and therefore, he drove us around it so that I could see what it was like. Of course we couldn’t go inside or anything because it was way too early and everything was closed, but I could tell that this mall was amazing and someplace I definitely want to check out the next time we come back. I definitely want to go to the Mirror Maze, the aquarium, etc. that they have inside. Besides having every store you can imagine, they have an amusement park with 3 roller coasters, an aquarium, nickelodeon studios, Lego World, Mirror Maze, etc. It looks like one amazing place and it is continuing to grow. They are adding an Olympic size ice-skating rink to it, which is supposed to open in the Fall. When I come back, I made my dad promise to take me there.
My dad was so funny when we were at the Mayo Clinic. When you are there, they give you a beeper every time you check in for an appointment and then when they are ready for you, the beeper goes off to notify you. However, my dad kept washing his hands because he thought they were ‘dirty’ because he kept saying, “you know how many sick people handle this?” Just when he thought he wouldn’t have to wash his hands anymore because he thought we were done with the beepers, we were given another appointment that needed a beeper. It wasn’t til after this last appointment that he told me what he kept doing, which was to keep washing his hands because he thought so many ‘sick’ people handled it. When he told me about it though, I told him that he didn’t have to worry because they sterilized and cleaned all the beepers after they were handled. I showed him that there was a box that they were put into after the patients were done with them so that they can be cleaned and as a result, they were clean when he was given them in the first place and had nothing to worry about. He felt so stupid after that. Only my dad!
The Mayo Clinic was simply amazing. Not only was it the biggest hospital I have ever been at, but I felt really comfortable there. Everyone there were so incredibly nice and so incredibly helpful. They would do anything to help you out. If you ever needed anything or even if you felt tired or anything, they would help you in any way possible… even if it was to bring you a wheelchair because you couldn’t walk anymore. They even had a piano there that anyone can go on to ‘play’ so there was constant music going throughout the place. I was quite surprised how many talented people were there. They really put on beautiful concerts.
In addition, they had little historical exhibits throughout the hospital. I saw many things such as the very first operating table, the first spoon to remove the gallbladder, how the nurses dressed etc. They even had a patient library where you could research anything and everything. If you needed anything… they had it. This place was mega impressive.
My dad is so funny because he keeps forgetting where we went. He keeps asking me if we went to “Minneapolis” or “Minnesota.” I keep telling him that “Minneapolis” is the city and “Minnesota” is the state. But I also keep telling him that really we went to “Rochester,” but he doesn’t want to tell people or remember that because he insists that no one ever heard or know about that city.
Want to hear something hilarious? My dad is very generous and believes in treating people good who are good to us. He likes to ‘thank’ people who help us out by tipping them because honestly they don’t have to be as generous as they are. So when we went to the airport in Minnesota, we thought that the transport guy that brought me to the gate was literally going to kiss my dad on the lips when my dad tipped him. My dad only gave him $5, but he got so excited and we literally thought that he was going to kiss him. He didn’t even want to leave my dad. When he got ‘paged,’ he told his supervisor that he was going to help me, but his supervisor was like “That is over an hour away… you can’t stay there.” The guy was too funny.
I also saw lately that one of my favorite authors included me in her newsletters. I have been fortunate to have Jodie Picoult write about me on her Facebook site and then include me in her newsletter. Perhaps she will be able to help me receive some aid or bring awareness to my cause because I could really use it. I need as much help as I can get.
So… that appears to be it. I guess I will go and rest because I have had a big trip and I am tired and not feeling well. Just wanted to give you the latest. I also have to go to the eye doctor tomorrow to get new glasses because I can’t see, as we found out from the eye exam. I hate getting new glasses because they are so incredibly expensive because I have to get such a specialized pair. I have so many things wrong with my eyes and since the muscles don’t work in my eyes well, I even have to wear high-level prisms. Just the lenses alone cost me nearly $1000. I don’t know how on earth we are going to afford this, but I can’t see. Gosh… when it rains it pours. People don’t realize that when you have your health, you have everything.
It is so important that we find a way of raising funds because of the expenses that we have especially now. I really need surgery in addition to the other treatments that I need. If you can think of any way to raise funds, I would really appreciate it because I am trying to hang in there, but I desperately need treatment if I am going to make it. Please help me. I hate being a ‘crier’ or sounding like a broken record, but I just need help so badly and I don’t want to die. I am just running out of funds and options, so I really need desperate help from others if I am going to make it and be able to continue treatment. Hope you can understand where I am coming from.
Well… talk to you soon.