Only 1
Well as of today, I am only on 1 pill. I am off the tricore for my tryglyceride levels. To think that 4 years ago they were over 1600 and now they are normal. It took me awhile, but now I only take 1 pill. The pill I am taking is DDAVP for the diabetes insipedis or DI for short. I am so happy about this. I was actually crying over this. I am so excited about this. I am getting control over my life. I was taken off the DDAVP briefly, but needed to be on it. I still take some suppliments to help me out, but I do not count them. The DDAVP is a small pill and I don't mind that one. I don't show many signs of DI and I would love to be off all meds, but it is just not meant to be at this time. I am just thrilled to be off all meds for the tryglycerides. First I came off the fish oil tablets then the niaspan. That helped with my bruising and hot flashes I was getting. The bruising was from the fish oil since it is a blood thinner. The hot flashes were from the niaspan. It also helps that I continue to lose weight. I am so happy.
TSO
Long time no post. Last Saturday November 19th I went to the Trans Siberian Orchestra concert.. It was so much fun. It was me, Rich, his mom Barb, my sister Cassie, and my parents. The same usher that helped my parents, Rich, and I last year was the same guy. He remembered us, I am not surprised though. Honestly how many blind people does he deal with. The show was great. It was the same story as last year, but it was still enjoyable. It was down in Philly at the Wells-Fargo Center. The seats were awesome. Like last year, I really couldn't see much other than the lights changing colors. Also there were pyrotechnics towards the end. I did feel those again. All in all it was a great day. This is the third time me, Rich, and my folks have seen TSO. Although it was the same show as last year, it was still fun.
Swimming
I have been swimming a lot. Today is the second day of 80 laps.. I swam 80 yesterday. Since the beginning of September, I have been swimming tons. Rich is taking lessons so he can swim with me. The first time I did it, I only swam 24 laps. After that I went to 40 laps and I have done 60 laps. I have done 80 three times now. 72 is one mile, so swimming 80 is a little over a mile. I have tried other strokes, but feel most comfortable doing breaststroke. I am doing awesome with it though. I am under 160 pounds.
I guess I should explain that Rich and I now have a membership to the Pottstown YMCA. We got it because they have the indoor pool and Rich wanted to get me back in the water. He knew I can swim and thought it would be great exercise for me. There are two pools, a whirlpool, two gyms, a weight room, and an indoor track.
I guess I should explain that Rich and I now have a membership to the Pottstown YMCA. We got it because they have the indoor pool and Rich wanted to get me back in the water. He knew I can swim and thought it would be great exercise for me. There are two pools, a whirlpool, two gyms, a weight room, and an indoor track.
Miss Saigon
Well I saw Miss Saigon. Even though this is being posted on July 18th, I actually saw it on July 17th. It was so good. It was the second time I saw the show. I went with my parents. I got the tickets from a very nice guy that I went to school with. He wanted to do something for me, so I said I wanted to see this show.
The seats were so good. We were only feet from the stage. I still could not see much, but I still enjoyed it. It was not too loud, which was a fear of mine. We were also almost directly in the center. The show was at the Walnut Street Theater. I had never been to that theater before, so I was unsure how it was set up.
After the show mom and I went to the ladies room and while we were waiting dad called me. When I answered it he stated that he was in the lobby with one of the main guys from the show and he was waiting to meet me. Mom and I hurried up and by the time we got there there was another cast member there. While we were talking the main female role came in with a friend of hers. So I got to meet all of them and got my picture taken with them. Then when we left and started heading towards the parking garage, we met two of the other leads. The main male role and his best friend in the show. It was so awesome.
I will definitely go back there. It was so easy to navigate and was all level for me. Well there was a slight slope in the theater itself, but other than that it is level. The one parking garage is right next to the theater.
I also wore my shirt from when I saw the show originally. Everyone that saw the shirt, both cast members and staff, loved it. It did stink that I was unable to buy a new shirt though. They were sold out of them. I can't be too suprised. Today was supposed to be the last day of the show, but it has been extended till July 24th.
The seats were so good. We were only feet from the stage. I still could not see much, but I still enjoyed it. It was not too loud, which was a fear of mine. We were also almost directly in the center. The show was at the Walnut Street Theater. I had never been to that theater before, so I was unsure how it was set up.
After the show mom and I went to the ladies room and while we were waiting dad called me. When I answered it he stated that he was in the lobby with one of the main guys from the show and he was waiting to meet me. Mom and I hurried up and by the time we got there there was another cast member there. While we were talking the main female role came in with a friend of hers. So I got to meet all of them and got my picture taken with them. Then when we left and started heading towards the parking garage, we met two of the other leads. The main male role and his best friend in the show. It was so awesome.
I will definitely go back there. It was so easy to navigate and was all level for me. Well there was a slight slope in the theater itself, but other than that it is level. The one parking garage is right next to the theater.
I also wore my shirt from when I saw the show originally. Everyone that saw the shirt, both cast members and staff, loved it. It did stink that I was unable to buy a new shirt though. They were sold out of them. I can't be too suprised. Today was supposed to be the last day of the show, but it has been extended till July 24th.
I Finished!
Well I did it. I finally finished the final Harry Potter book. It only took me about 8 months, but I am done. I finished it last night. I will not ruin it for those who are reading it or are going to. I did succeed though, my mission was to get book 7 read before the second part of the movie comes out. So now that they are all done, my next step is to watch the other movies. I have seen up to movie 5, that was the last one I saw before I lost my sight. I have the sixth one and have to buy the first part of the seventh one. I hate being so emotional now. I cried after the sixth and seventh books.
TSO Concert
So on April 7th I went to a Trans Siberian Orchestra concert again.. I went with Rich and my parents. They performed Beethoven's Last Night. It was great and I loved it. It was TSO's first time in Reading, so after the show they signed things. The show was over at about ten thirty, so by the time we went to the souvineer stand and got in line for autographs it was about ten fourty. They did not come out till around eleven o'clock. I stood in line and waited though. I stood for about fourty-five minutes by the time it was all said and done. It was so cool though. I got my t-shirt signed and Rich got his ticket stub signed. It was neat to meet them and to know how grateful they are to have people come to their shows. It was an awesome concert. My parents even liked it. It was in a place I have only been to once though. It was at the Reading Eagle Theater in the Sovren Center. I am pretty sure I misspelled that. Oh well.
Weight Loss
Well I have lost about 50 pounds in the past 14 months. I really haven't changed the way I have been eating. I am just exercising. I have been doing a lot of walking with my fiance, Rich, and now I have started riding his stationary bike. I am also doing things with my Wii. I have been doing my Wii Fit and have been doing my Wii bowling.
I went to the doctor's today and my triglyceride levels have really dropped. When I started seeing the endocrinologist, my triglcyrides were 1600 and now they are at 141. I am finally off my fish oil tablets and cut my Niaspan from 1500mg to 1000mg. I am so happy about this.
I know that many may not think that this is that important, but when you have been trying to come off drugs it is a gigantic deal. I have to get bloodwork done in 3 months, but this is peanuts compared to what I have been going through. Rich is so proud of me. His goal is to get me down to 160 pounds by the summer. He knows that it will happen.
I am happy that he has faith in me, because I know that I don't necessarily believe in myself. I am getting better at this. I think that I can hopefully do this. I know I am going to have to work for it, but I can do it. It will require me to do more walking and I am really enjoying riding the bike. That is something I never thought I would say. I am home for a couple of days and I miss riding the bike.
On a completely different note, remember people can comment on my blog. I do and will get them and it will help me out. Thanks.
I went to the doctor's today and my triglyceride levels have really dropped. When I started seeing the endocrinologist, my triglcyrides were 1600 and now they are at 141. I am finally off my fish oil tablets and cut my Niaspan from 1500mg to 1000mg. I am so happy about this.
I know that many may not think that this is that important, but when you have been trying to come off drugs it is a gigantic deal. I have to get bloodwork done in 3 months, but this is peanuts compared to what I have been going through. Rich is so proud of me. His goal is to get me down to 160 pounds by the summer. He knows that it will happen.
I am happy that he has faith in me, because I know that I don't necessarily believe in myself. I am getting better at this. I think that I can hopefully do this. I know I am going to have to work for it, but I can do it. It will require me to do more walking and I am really enjoying riding the bike. That is something I never thought I would say. I am home for a couple of days and I miss riding the bike.
On a completely different note, remember people can comment on my blog. I do and will get them and it will help me out. Thanks.
Rich's iPhone
Well it is scaring me, but I am slowly learning to use Rich's iPhone. I have not done anything major yet though. Right now I am concentrating on learning how to work the iPod function. This phone is the only phone that is accessible for the blind and I want to get one. My biggest problem is getting the gestures down. Since there is no number pad, I have to learn the hand gestures. I think that this will be the hardest part for me. The phone can handle more than I think, I just don't want to break Rich's phone. He tells me that I won't do it though. I am getting much better than I was a few months ago. At least he is willing to let me try it. I need to learn somehow and luckily I have a fiance with one and he is ok with me trying it out.
In other news, I was listening to my book yesterday and I was halfway through chapter 26 and the battery died on me. It gives no warning just dies. Well actually it says low battery and then dies. It did that during the last Harry Potter book I was listening to. I was in the last chapter of the forth book and it died on me. I was so frustrated. Now I am on book five and it did it again. Oh well it is charged up now. There is about nine and a half hours to go. Then it will be on to book six. I really haven't been listening to it like I was. Getting engaged will do that to you. Also now that my nerve racking doctor's appoinment is over with, I am much better.
I am also not sure how it happened, but I still managed to lose a pound. When I went to the doctors I was 175 pounds and today when Rich weighed me I was 174 pounds. Since we met I have lost about 40 pounds. I am walking better and feel better with it gone. I really have not changed my eating habits, it is from walking. I am going in the right direction. I have not weighed this since before I got sick. Hopefully it will keep going.
In other news, I was listening to my book yesterday and I was halfway through chapter 26 and the battery died on me. It gives no warning just dies. Well actually it says low battery and then dies. It did that during the last Harry Potter book I was listening to. I was in the last chapter of the forth book and it died on me. I was so frustrated. Now I am on book five and it did it again. Oh well it is charged up now. There is about nine and a half hours to go. Then it will be on to book six. I really haven't been listening to it like I was. Getting engaged will do that to you. Also now that my nerve racking doctor's appoinment is over with, I am much better.
I am also not sure how it happened, but I still managed to lose a pound. When I went to the doctors I was 175 pounds and today when Rich weighed me I was 174 pounds. Since we met I have lost about 40 pounds. I am walking better and feel better with it gone. I really have not changed my eating habits, it is from walking. I am going in the right direction. I have not weighed this since before I got sick. Hopefully it will keep going.
Remission
So today is the one year and one month anniversary of my remission. I know that it may not seem like a lot, but it is. No one typically goes into remission from Erdheim-Chester Disease, but for some reason I have. ECD is so rare that hardly anyone has ever heard of it. A lot of doctors have never even heard of it. I hope to help to change that somewhat. If anyone wants to learn more about the disease go to http://www.erdheim-chester.org/. That is the best resource.
Sigh of Relief
Well today was the day. I am still in remission from Erdheim-Chester Disease. It stinks that I am actually really upset about this. My next doctor's appointment is in 6 months and I do not have to get another MRI for a year. This whole concept really makes me sad. I know that it shouldn't, but it does. It makes me sad that a lot of the people in my life are at the hospital. I know that this is a very good thing, but it still upsets me.
My appointment was really short today. It is getting to the point where the doctor is just going to start calling me with the results. I did get to see Holland and all my friends in Rhoads today. That was very nice. I know that they are all glad that I just come to visit them now. I also showed off my ring and fiance.
He is waiting for someone to not like the ring. It is not going to happen though. Everyone was glad to see how happy I am. Most of them remember when this was not the case. I am very glad that I am in this place. It took awhile but I am there and hope to stay there.
My appointment was really short today. It is getting to the point where the doctor is just going to start calling me with the results. I did get to see Holland and all my friends in Rhoads today. That was very nice. I know that they are all glad that I just come to visit them now. I also showed off my ring and fiance.
He is waiting for someone to not like the ring. It is not going to happen though. Everyone was glad to see how happy I am. Most of them remember when this was not the case. I am very glad that I am in this place. It took awhile but I am there and hope to stay there.
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