In addition, the sun, heat, and mugginess really did flare up my illness and caused it to really become worse than ever and as a result, we were forced to go back to the hotel. I am extremely in pain and highly hypersensitive. Therefore, the sun was burning me because it was way too strong and it was too hot outside too. Plus, with all the mugginess of the weather too, it just was not a good combination. It just really flared everything up and it felt like my pants were on fire. When I get hot, I cannot sweat because of the autonomic dysfunction and as a result, I end up getting prickly and blistering. It was nothing but a disaster, but dad was my usual hero and came to my rescue. He took me back to the hotel and tried to make me as comfortable as possible. I was really disappointed that I didnt get to do all the great things that I wanted to do. I really wanted to go to Ripleys but the heat got to me and I would have loved to go to the HARD ROCK CAF to get a sweatshirt, but it was too far of a walk. Maybe we will get to do these things when we come back the next time. I do have to say that I was impressed that on my outing that I saw these solar power trash compactors. I couldnt believe that there was such a thing to be honest with you. I wonder why there wasnt more of them around like in New York. The day finished up by going for dinner and having problems in that area too. I didnt even want to go for dinner, but like always, my dad made me because he said that I couldnt afford to lose weight. Due to my illness, I cant eat and swallow many foods and the ones that I can need to be prepared a certain way. I ended up having to send back my food so many times because it wasnt made how I needed to it be that we ended getting our dinners free. If my dad would have known our dinners would have been free, I am sure that he would have ordered something else. My dad usually orders meals when we go away based on the cost. When you are strapped for cash and watching every penny, the cost plays a huge factor in whether you get something or not even though you might want something else. My dad much rather have wanted something else I am sure at this restaurant that we ate at tonight, but he ended up getting a turkey club. He should have had some seafood or especially crab or something considering that we were in Maryland and it probably would never have been better than if he got it here, but he ended up going with the Turkey club because of the cost. However, if he knew that the dinner was going to be free, he probably would have went with a better dinner such as the seafood or something. When we were sitting at dinner, my dad said to me that the chef was looking at me. I saw the chef come out, but I didnt think my dad was really serious. Well no sooner did he say that but the actual chef came out of the kitchen with my food. We had sent my food back so many times that the actual chef came out to personal hand deliver the food and to make sure that it was made to my liking and to also apologize for everything that had occurred. I couldnt believe it. But to further add to our surprise besides the chef coming out, they ended up not charging us at all and the bill wasnt cheap either. But that was yesterday and today didnt go too great and was filled with so much bad news (well good news depending on how you want to look at it). I should have known something was going to happen from the moment that I woke up because first of all we overslept when we couldnt afford to because today was filled with all my doctor appointments at the hospital and the weather was also nasty outside. We didnt set a wake up call because we thought we would definitely have been up because my dad never sleeps late. We didnt have to be at the hospital until 9AM, so ideally we didnt have to be up until 7 AM because we would have to get dress and grab breakfast. There would be no way that we would need a wake up call because dad never sleeps that late. But I guess dad was just so exhausted from all the hard work that he has been doing at his job and such and with all the stress that he has been under because he actually overslept. If it werent for my mom, we would have definitely missed our appointments. I never sleep either, but right before 7AM, I ended up taking my meds, which always knock me out for a brief period of time. When I take my meds, it knocks me out for about 30 minutes, which is the only rest I get. Of course when I wake up, it is back to pain and I am up for the duration. But thankfully, my mom called us at a little over 7AM to say Good Morning, which woke us up so we werent late to the hospital. What a day we had at the hospital! I am really glad in a way that we came to John Hopkins because I am really happy with my new team of doctors here even though I am extremely exhausted and fearful about all that is about to happen. I never thought that I would have to undergo all that is going to happen, but I hope that I am in good hands because I am at John Hopkins. After all, they are ranked like the #1 hospital in the country. Never before did I feel so comfortable at a hospital. I really loved the team of doctors that I met with. They were incredibly not only incredibly knowledgeable and willing to help me, but they were also incredibly nice and had excellent bedside manners. They really made us feel extremely comfortable and took their time with us. They didnt just rush us in and out. They answered every question that we had no matter how stupid and repetitive it was. They really made us feel welcomed. Unfortunately though, the doctors did say that I am way too sick to be helped right now. They said that in the past, they have been known to hold people in their office for hours if it meant that they could help them and do something. However, in my case, they said that it would even be impossible to do anything at all if they held me all day because I am so medically sick and medically complicated. As a result, they said that I needed the help that went far beyond their hands. They said that I needed the work of the entire hospital, as I needed the help of specialists from various disciplines across the entire hospital spectrum. Therefore, they said the only thing that we could do was be hospitalized in order to be actually helped. They said that what needed to be done required not only to be hospitalized but because it was so life threatening as well, I would have to be placed into the ICU. It couldnt even be the step down ICU, but it has to be the very ICU itself, which is extremely difficult to get into because there are only so many beds.
Posted on: Sat, 13 Jul 2013 08:49:43 +0000
Trending Topics
Recently Viewed Topics
© 2015